| Global Patient Survey |
| GPS: Pulmonary Hypertension |
| <div>\n<div>Pulmonary hypertension (PH) is high blood pressure in the blood vessels which supply the lungs. PH is caused by a heterogenous group of conditions which can affect patients of all ages in diverse ways, with varying treatment options and lived experiences.</div>\n<div> </div>\n<div>The purpose of the questionnaire is to improve global understandings of how PH affects the lives of patients and what ways PH care needs to be improved. It is designed for patients who live with PH but can be completed by a family member or caregiver on the behalf of the patient. If the patient is below 16 years of age, the survey must be completed by a parent or guardian.</div>\n<div> </div>\n<div>As this is the first global survey to assess the impacts of PH on patients and their lived experiences, your contributions in completing this questionnaire will be instrumental in directing future research to improve care and outcomes for patients globally. All data from this survey will be anonymised when used in academic publication and presentation.</div>\n<div> </div>\n<div>This survey has been written by a multidisciplinary panel of PH specialists and patient group advocates from the Pulmonary Hypertension Associations of Europe, United States, United Kingdom and South Africa. It was coordinated by the Pulmonary Vascular Research Institute’s (PVRI) Patient Engagement & Empowerment taskforce and endorsed by ERN-Lung.</div>\n<div> </div>\n<div>This survey consists of three sections with each section taking approximately 10 minutes to complete.</div>\n<div> </div>\n<div>Thank you once again for contributing to our vision to improve worldwide patient experience.</div>\n<div> </div>\n<div><em>In submitting this form I agree to my details being used for the purposes of the PVRI’s Patient Engagement & Empowerment Workstream. The information will only be accessed by necessary university staff. I understand my data will be held securely and will not be distributed to third parties. I have a right to change or access my information. I understand that when this information is no longer required for this purpose, due diligence will be followed to dispose of my data. We use the personal data you have given us in order to communicate with you in the event you share your contact information at the end of the Global Patient Survey. This processing is conducted lawfully on the basis of legitimate interests, it is in our interests to analyse medical data. Where we rely on legitimate interests, we will always make sure that we balance these interests against your rights.</em></div>\n</div> |
| Section 1: General Information |
| <div>The aim of this first section is to understand more about you and your experience of pulmonary hypertension.</div> |
| Are you answering this questionnaire as a… |
| Patient |
| Parent or guardian of a child with pulmonary hypertension (PH) (mandatory if the patient is under 16 years of age) |
| Parent or guardian of an adult with pulmonary hypertension (PH) |
| Spouse/partner of a patient with pulmonary hypertension (PH) |
| Caregiver of a patient with pulmonary hypertension (PH) |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| What country do you currently live in? |
| Afghanistan |
| Albania |
| Algeria |
| American Samoa |
| Andorra |
| Angola |
| Antigua and Barbuda |
| Argentina |
| Armenia |
| Aruba |
| Australia |
| Austria |
| Azerbaijan |
| Bahamas, The |
| Bahrain |
| Bangladesh |
| Barbados |
| Belarus |
| Belgium |
| Belize |
| Benin |
| Bermuda |
| Bhutan |
| Bolivia |
| Bosnia and Herzegovina |
| Botswana |
| Brazil |
| British Virgin Islands |
| Brunei Darussalam |
| Bulgaria |
| Burkina Faso |
| Burundi |
| Cabo Verde |
| Cambodia |
| Cameroon |
| Canada |
| Cayman Islands |
| Central African Republic |
| Chad |
| Channel Islands |
| Chile |
| China |
| Colombia |
| Comoros |
| Congo, Dem. Rep. |
| Congo, Rep. |
| Costa Rica |
| Cote d’Ivoire |
| Croatia |
| Cuba |
| Curacao |
| Cyprus |
| Czechia |
| Denmark |
| Djibouti |
| Dominica |
| Dominican Republic |
| Ecuador |
| Egypt, Arab Rep. |
| El Salvador |
| Equatorial Guinea |
| Eritrea |
| Estonia |
| Eswatini |
| Ethiopia |
| Faroe Islands |
| Fiji |
| Finland |
| France |
| French Polynesia |
| Gabon |
| Gambia, The |
| Georgia |
| Germany |
| Ghana |
| Gibraltar |
| Greece |
| Greenland |
| Grenada |
| Guam |
| Guatemala |
| Guinea |
| Guinea-Bissau |
| Guyana |
| Haiti |
| Honduras |
| Hong Kong SAR, China |
| Hungary |
| Iceland |
| India |
| Indonesia |
| Iran, Islamic Rep. |
| Iraq |
| Ireland |
| Isle of Man |
| Israel |
| Italy |
| Jamaica |
| Japan |
| Jordan |
| Kazakhstan |
| Kenya |
| Kiribati |
| Korea, Dem. People’s Rep. |
| Korea, Rep. |
| Kosovo |
| Kuwait |
| Kyrgyz Republic |
| Lao PDR |
| Latvia |
| Lebanon |
| Lesotho |
| Liberia |
| Libya |
| Liechtenstein |
| Lithuania |
| Luxembourg |
| Macao SAR, China |
| Madagascar |
| Malawi |
| Malaysia |
| Maldives |
| Mali |
| Malta |
| Marshall Islands |
| Mauritania |
| Mauritius |
| Mexico |
| Micronesia, Fed. Sts. |
| Moldova |
| Monaco |
| Mongolia |
| Montenegro |
| Morocco |
| Mozambique |
| Myanmar |
| Namibia |
| Nauru |
| Nepal |
| Netherlands |
| New Caledonia |
| New Zealand |
| Nicaragua |
| Niger |
| Nigeria |
| North Macedonia |
| Northern Mariana Islands |
| Norway |
| Oman |
| Pakistan |
| Palau |
| Panama |
| Papua New Guinea |
| Paraguay |
| Peru |
| Philippines |
| Poland |
| Portugal |
| Puerto Rico |
| Qatar |
| Romania |
| Russian Federation |
| Rwanda |
| Samoa |
| San Marino |
| Sao Tome and Principe |
| Saudi Arabia |
| Senegal |
| Serbia |
| Seychelles |
| Sierra Leone |
| Singapore |
| Sint Maarten (Dutch part) |
| Slovak Republic |
| Slovenia |
| Solomon Islands |
| Somalia |
| South Africa |
| South Sudan |
| Spain |
| Sri Lanka |
| St. Kitts and Nevis |
| St. Lucia |
| St. Martin (French part) |
| St. Vincent and the Grenadines |
| Sudan |
| Suriname |
| Sweden |
| Switzerland |
| Syrian Arab Republic |
| Tajikistan |
| Tanzania |
| Thailand |
| Timor-Leste |
| Togo |
| Tonga |
| Trinidad and Tobago |
| Tunisia |
| Turkiye |
| Turkmenistan |
| Turks and Caicos Islands |
| Tuvalu |
| Uganda |
| Ukraine |
| United Arab Emirates |
| United Kingdom |
| United States |
| Uruguay |
| Uzbekistan |
| Vanuatu |
| Venezuela, RB |
| Vietnam |
| Virgin Islands (U.S.) |
| West Bank and Gaza |
| Yemen, Rep. |
| Zambia |
| Zimbabwe |
| This question requires an answer. |
| What is your year of birth? |
| 1920 |
| 1921 |
| 1922 |
| 1923 |
| 1924 |
| 1925 |
| 1926 |
| 1927 |
| 1928 |
| 1929 |
| 1930 |
| 1931 |
| 1932 |
| 1933 |
| 1934 |
| 1935 |
| 1936 |
| 1937 |
| 1938 |
| 1939 |
| 1940 |
| 1941 |
| 1942 |
| 1943 |
| 1944 |
| 1945 |
| 1946 |
| 1947 |
| 1948 |
| 1949 |
| 1950 |
| 1951 |
| 1952 |
| 1953 |
| 1954 |
| 1955 |
| 1956 |
| 1957 |
| 1958 |
| 1959 |
| 1960 |
| 1961 |
| 1962 |
| 1963 |
| 1964 |
| 1965 |
| 1966 |
| 1967 |
| 1968 |
| 1969 |
| 1970 |
| 1971 |
| 1972 |
| 1973 |
| 1974 |
| 1975 |
| 1976 |
| 1977 |
| 1978 |
| 1979 |
| 1980 |
| 1981 |
| 1982 |
| 1983 |
| 1984 |
| 1985 |
| 1986 |
| 1987 |
| 1988 |
| 1989 |
| 1990 |
| 1991 |
| 1992 |
| 1993 |
| 1994 |
| 1995 |
| 1996 |
| 1997 |
| 1998 |
| 1999 |
| 2000 |
| 2001 |
| 2002 |
| 2003 |
| 2004 |
| 2005 |
| 2006 |
| 2007 |
| 2008 |
| 2009 |
| 2010 |
| 2011 |
| 2012 |
| 2013 |
| 2014 |
| 2015 |
| 2016 |
| 2017 |
| 2018 |
| 2019 |
| 2020 |
| 2021 |
| 2022 |
| 2023 |
| This question requires an answer. |
| What sex were you assigned at birth? |
| Female |
| Male |
| Prefer not to say |
| This question requires an answer. |
| There are many different types of pulmonary hypertension (PH). In this part of the questionnaire, we would like to better understand your condition by asking you the type of PH that you have been diagnosed with. You may not know this straight away so it might be useful to look at your clinical letter to see what your doctor has written about the type of PH you have. |
| Had you heard about pulmonary hypertension prior to your diagnosis? |
| Yes |
| No |
| This question requires an answer. |
| Which one of the following diagnoses describes your PH best? It may be useful to look at your clinical letter now to help answer this question |
| Group 1 – pulmonary arterial hypertension (PAH) |
| Group 2 – PH associated with left heart disease |
| Group 3 – PH associated with lung disease (Including COPD, Interstitial/fibrotic lung disease, other lung diseases) |
| Group 4 – Chronic thromboembolic pulmonary hypertension (CTEPH) |
| Group 5 – PH with unclear and/or multifactorial mechanisms (e.g. haematologic disorders, sarcoidosis, or systemic disorders). |
| I do not know/I am not sure |
| Other (please specify) |
| This question requires an answer. |
| Within ‘Group 1 – pulmonary arterial hypertension (PAH)’, which of the following diagnoses describes your PH more specifically? Again, it may be useful to look at your clinical letter now to help you |
| Idiopathic pulmonary arterial hypertension (iPAH) |
| Heritable/genetic pulmonary arterial hypertension (hPAH) |
| Pulmonary arterial hypertension associated with drugs and toxins |
| Pulmonary arterial hypertension associated with connective tissue disease |
| Pulmonary arterial hypertension associated with HIV infection |
| Pulmonary arterial hypertension associated with liver disease |
| Pulmonary arterial hypertension associated with congenital heart disease |
| Pulmonary arterial hypertension associated with schistosomiasis |
| Pulmonary Arterial Hypertension with features of venous/capillary involvement (PVOD/PCH) |
| I do not know/I am not sure |
| This question requires an answer. |
| Have you had genetic testing to help determine your PH diagnosis? |
| Yes and my relatives have also had genetic testing |
| Yes but my relatives have not had genetic testing |
| Yes and I do not know if my relatives have had genetic testing |
| No, I have not had genetic testing |
| This question requires an answer. |
| Why have you not had genetic testing? |
| It has not been offered to me |
| I cannot/do not want to pay as it is not reimbursed |
| I would prefer not to know about my genetics |
| Other (please specify) |
| This question requires an answer. |
| Do you know the result of this genetic testing? |
| Yes, I have been informed of the results |
| No, I am still waiting on the results |
| This question requires an answer. |
| Please specify how long you have been waiting for the results of the genetic testing. |
| Less than one month |
| 1-6 months |
| 6-12 months |
| Longer than 12 months |
| This question requires an answer. |
| Pulmonary endarterectomy surgery (PEA) is an operation to remove old blood clots from the pulmonary arteries in the lungs. |
| Have you been offered pulmonary endarterectomy surgery (PEA)? |
| Yes, I have been offered PEA surgery |
| Yes, but I do not want PEA surgery |
| No, I have not been offered PEA surgery |
| This question requires an answer. |
| Have you had PEA surgery? |
| Yes |
| No |
| This question requires an answer. |
| How long did you have to wait between diagnosis of CTEPH and having the surgery done? |
| Less than 1 month |
| 1-6 months |
| 6-12 months |
| Longer than 12 months |
| This question requires an answer. |
| On a scale from 1-5 (with 1 being significantly worse and 5 being fully recovered) how do you feel since the PEA surgery? |
| Please enter a whole number between {0} and {1}. |
| 1 |
| 5 |
| This question requires an answer. |
| Balloon pulmonary angioplasty (BPA) is a procedure that involves a fine wire being inserted into blood vessels in the lungs, guiding a tiny balloon into position. The balloon is inflated, to around the size of a pea, for a few seconds to push the blockage aside and restore blood flow to the lung tissue. The balloon is then deflated and removed. This is usually done over multiple sessions. |
| Have you been offered balloon pulmonary angioplasty (BPA)? |
| Yes, I have been offered BPA |
| Yes, but I do not want to have BPA |
| No, I have not been offered BPA |
| This question requires an answer. |
| How many sessions of balloon pulmonary angioplasty (BPA) have you had in total? |
| 1-5 |
| 6-10 |
| More than 10 |
| This question requires an answer. |
| How long did you have to wait between diagnosis of CTEPH and having the first session of balloon pulmonary angioplasty (BPA)? |
| Less than 1 month |
| 1 – 6 months |
| 6 -12 months |
| 1 – 2 years |
| Over 2 years |
| This question requires an answer. |
| On a scale of 1-5 (with 1 being significantly worse and 5 being fully recovered), how do you feel <em>longer term</em> since finishing your BPA sessions (if applicable)? |
| Please enter a whole number between {0} and {1}. |
| 1 |
| 5 |
| This question requires an answer. |
| Approximately, how long did it take to get your diagnosis from when your symptoms first started? |
| Less than 1 month |
| 1 – 6 months |
| 6 – 12 months |
| 1 – 2 years |
| 2 – 5 years |
| Over 5 years |
| This question requires an answer. |
| There are many types of medications used to treat pulmonary hypertension. Here we would like to understand more about your medication and your experience of taking it. You may take multiple medications, in this case choose all that are applicable. |
| What are the name(s) of the PH medication(s) you are currently taking? It may be useful to look at your prescription now to help answer this question. Sometimes there are multiple brand names for the same drug, some of which are stated below. Please select all that apply. |
| Ambrisentan (Letairis) |
| Amlodipine (Istin) |
| Bosentan (Tracleer) |
| Diltiazem (Adizem, Angitil, Dilcardia, Retalzem, Slozem, Tildiem, Uard, Viazem, Zemtard) |
| Epoprostenol (Flolan) |
| Epoprostenol (Veletri) |
| Iloprost (Ventavis) |
| Macitentan (Opsumit) |
| Nifedipine (Adalat, Adanif, Adipine, Coracten, Dexipress, Fortipine, Neozipine, Nidef, Nifedipress, Tensipine, Valni) |
| Nircadipine (Cardene) |
| Riociguat (Adempas) |
| Sildenafil (Revatio) |
| Tadalafil (Cialis) |
| Treprostinil (Remodulin) |
| Treprostinil (Tyvaso) |
| I am not sure/I would prefer not to answer |
| Other including drugs as part of a clinical trial (please specify) |
| This question requires an answer. |
| Are you on blood thinning medication (anti-coagulants)? |
| Yes |
| No |
| This question requires an answer. |
| What kind of blood thinning medication (anti-coagulant) are you taking? It may be useful to look at your prescription to help answer this question. Choose all that apply. |
| Warfarin or Acenocoumarol tablets – these require regular blood tests to check the dose |
| Dabigatran, rivaroxaban, apixaban, edoxaban or betrixaban tablets |
| Injections under the skin (e.g. heparin drugs) – there are lots of types |
| Other (please specify) |
| This question requires an answer. |
| Have you experienced any side effects <em>that you think are</em> due to your PH medication in the last 6 months? |
| Yes |
| No |
| This question requires an answer. |
| What side effects of your medication have you experienced in the last 6 months? Choose all that are applicable. |
| Stomach upset or nausea |
| Heartburn |
| Headache |
| Nosebleeds |
| Skin flushing |
| Muscle aches |
| Trouble sleeping |
| Shortness of breath |
| Nasal congestion |
| I do not know/I am not sure |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| In the last 6 months, have you had a discussion with your healthcare provider about possibly changing your medication due to side effects? |
| Yes |
| No |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Do you ever use oxygen? |
| Yes |
| No |
| This question requires an answer. |
| Do you use a portable (ie. ready for travelling) oxygen concentrator? |
| Yes |
| No |
| This question requires an answer. |
| Have you had a heart and/or lung transplant? |
| Yes – heart transplant |
| Yes – lung transplant |
| Yes – heart and lung transplant |
| No |
| This question requires an answer. |
| Are you currently awaiting a heart and/or lung transplant? |
| Yes – heart transplant |
| Yes – lung transplant |
| Yes – heart and lung transplant |
| No, I am not awaiting a transplant |
| This question requires an answer. |
| Do you have an official disabled status due to your PH in your country? Examples might include you having a disabled badge for car parking or receiving disability benefits. |
| Yes |
| No |
| This question requires an answer. |
| What are the benefits of having disabled status in your country? Please select all that apply |
| Special care |
| Parking |
| Financial benefits (eg. state subsidy, tax allowance) |
| Reduced working hours |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| The next set of questions relate to research to find new drugs for PH which is vital to improve the outcomes for patients over time. |
| Have you ever taken part in a clinical research trial (which involved research into a drug or device for PH)? |
| Yes |
| No |
| This question requires an answer. |
| What was your overall experience of the trial like? |
| Very bad |
| Bad |
| No opinion |
| Good |
| Very good |
| This question requires an answer. |
| Would you participate again in a clinical trial that involved taking a drug for pulmonary hypertension? |
| Definitely not |
| Probably not |
| Unsure |
| Probably yes |
| Definitely yes |
| This question requires an answer. |
| Would you ever consider taking part in a clinical trial? |
| Yes |
| Please enter a comment. |
| No, please specify your reasons for this decision |
| This question requires an answer. |
| Would you be willing to allow researchers to access and use your anonymous<br>healthcare information that has already been collected as part of your routine care (e.g. GP records)? |
| Yes |
| No |
| This question requires an answer. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 1 of 3 sections</strong></span> |
| Section 2: Monitoring Your Pulmonary Hypertension |
| Pulmonary hypertension is a chronic (long term) condition which needs monitoring over time. Patients are now increasingly monitoring their own progress. Different people do this in different ways. In this section we would like to understand how you monitor your PH. |
| Do you monitor your PH yourself (i.e self-monitor) and/or record your health status? |
| Yes |
| No |
| Used to but not anymore |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How do you monitor your pulmonary hypertension? |
| Keep a record on paper/calendar |
| Use a sport/health application on a smartphone/tablet/smartwatch |
| Use a specialised PH application on a smartphone/tablet/smartwatch |
| Please enter a comment. |
| Other (please specify) |
| Do you share the information collected with the clinical team looking after your PH? |
| Yes regularly |
| Yes sometimes |
| No but I would be happy to |
| No and I would prefer not to |
| This question requires an answer. |
| Do you own a smartphone (i.e. a phone with internet access)? |
| Yes, I have an iPhone (Apple) |
| Yes, I have an Android phone (including Samsung, Sony, Huawei, LG, OnePlus, Google) |
| I have a mobile phone but it isn’t a smartphone |
| I do not own a mobile phone |
| This question requires an answer. |
| Do you own a wearable activity tracker (e.g. a smartwatch)? |
| Yes, I have a smartwatch |
| No, I use my phone/another method to track my activity |
| No, I do not track my activity |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| In general, how confident do you feel using apps on a mobile phone or tablet device to monitor your condition? (An ‘app’ is a software application on a device that accesses the internet) |
| Not confident |
| Somewhat confident |
| Quite confident |
| Very confident |
| This question requires an answer. |
| A 6-Minute Walk Test is where you are asked to walk as far as you can in 6 minutes. If you were trained to measure your distance with an app on a smartphone or digital device, would you feel able to complete a 6-Minute Walk Test outside of the hospital (e.g. walking outside your house)? |
| Yes |
| No |
| I’m not sure |
| This question requires an answer. |
| How active do you consider yourself to be? |
| Very inactive |
| Quite inactive |
| Neither active or inactive |
| Quite active |
| Very active |
| This question requires an answer. |
| Patient Reported Outcome (PRO) questionnaires are forms filled out by patients to assess how they feel about living with PH and their quality of life. Doctors often ask PH patients to fill out a PRO questionnaire to keep track of their patient’s health status. Alternatively, people living with PH might fill out a PRO questionnaire by themselves to self-monitor their health status. Here you will find questions about PRO questionnaires and how you use them. |
| Have you ever filled out a Patient Reported Outcome (PRO) questionnaire to assess your condition? |
| Yes |
| No |
| This question requires an answer. |
| Which of the following PRO questionnaires have you filled out? Please select all that apply. There are pictures of the different types for your reference |
| Other/I am not sure (see below) |
| CAMPHOR |
| EMPHASIS-10 |
| PAH-SYMPACT |
| LPHQ |
| This question requires an answer. |
| If you chose ‘other’ in the previous question, please tell us which other PRO questionnaire(s) you have filled out. If you are not sure, please leave blank. |
| How often do you fill out patient reported outcome (PRO) questionnaire(s)? Please choose all that apply. |
| Only once when I was diagnosed |
| Every time I have an appointment |
| At regular intervals (e.g. once a year) |
| When I participated in a clinical trial |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Who gave you the PRO questionnaire(s) to fill out? Please choose all that apply. |
| My doctor gave it to me |
| My nurse gave it to me |
| A researcher gave it to me |
| A patient organisation sent it to me |
| I found it myself on the Internet |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How did you complete the PRO questionnaire(s)? Please choose all that apply. |
| Via a website online |
| On paper |
| Via an app |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| On average, how long does it take to complete a PRO questionnaire? |
| Less than 5 minutes |
| 5 to 10 minutes |
| 10 to 20 minutes |
| More than 20 minutes |
| This question requires an answer. |
| Have you received any feedback from your medical team or did you talk about the patient reported outcome PRO questionnaire(s) you filled in? |
| The questionnaire was collected by my medical team but I have not received any further information |
| I got feedback from my medical team about it |
| I collected the data solely to self-monitor my condition |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Has your treatment ever been altered based on your answers in a PRO questionnaire |
| Yes |
| No |
| I’m not sure |
| This question requires an answer. |
| Do you think the questions cover the ways in which PH affects your life? |
| Yes (they cover all ways in which PH affects my life) |
| Mostly (they cover some of the ways in which PH affects my life) |
| No (they do not cover many of the ways PH affects my life) |
| Not at all (they cover none of the ways PH affects my life) |
| N/A (PH does not affect my life) |
| This question requires an answer. |
| Are there any ways that PH affects your life that are not included in the PRO questionnaire(s) that you have completed? (please give details) |
| <strong>As well as self-monitoring pulmonary hypertension, many people attend appointments at specialised PH clinics. This section has questions about the specialised centre/hospital appointments you may attend regarding your pulmonary hypertension.</strong> |
| Are you currently under the care of a specialist centre/hospital? |
| Yes |
| No |
| This question requires an answer. |
| How long have you been under the care of a specialist centre/hospital? |
| Less than 1 month |
| 1 – 6 months |
| 6 -12 months |
| 1 – 2 years |
| 2 – 5 years |
| More than 5 years |
| This question requires an answer. |
| Is the cost of the healthcare provided by this specialist centre reimbursed or paid for by your healthcare provider and/or the national insurance fund (e.g. NHS in the UK)? |
| Yes, it is reimbursed/paid for in full |
| Yes, it is partially reimbursed/paid for |
| No, it is not reimbursed/paid for |
| I am not sure |
| This question requires an answer. |
| Does your centre provide rehabilitation services or cooperate with centres providing such services? |
| Yes |
| No |
| I am not sure |
| This question requires an answer. |
| Is this rehabilitation reimbursed/paid for by your healthcare provider and/or the national insurance fund? |
| Yes, it is reimbursed/paid for in full |
| Yes, it is partially reimbursed/paid for |
| No, it is not reimbursed/paid for |
| I am not sure |
| This question requires an answer. |
| Approximately how frequently do you see your doctor at the specialist centre? |
| More than once a month |
| Once a month |
| Once every 2-3 months |
| Once every 3-6 months |
| Once every 6-12 months |
| Less than once every 12 months |
| This question requires an answer. |
| How long does your average visit take in the specialist PH hospital (not involving travel to and from the centre)? |
| Less than 30 minutes |
| 30-60 minutes |
| 1-2 hours |
| 2-4 hours |
| 4-6 hours |
| More than 6 hours |
| This question requires an answer. |
| Do you normally travel to a PH centre with a family member/friend/caregiver? |
| Yes, to help me with travelling arrangements |
| Yes, for emotional support/helping with information given to me during the visit in PH centre |
| Yes, for help travelling and for emotional support/helping with the information given to me |
| Yes, but for other reasons |
| No, I travel alone |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How do you normally travel to your appointments at your specialist PH hospital? |
| By car |
| By public transportation (eg. train, bus or metro/underground) |
| By taxi /shared ride service (Uber, Lyft, etc.) |
| By hospital transport |
| By air |
| Please enter a comment. |
| Other (eg. walk, please specify) |
| This question requires an answer. |
| Approximately how far away do you live from your specialist PH centre/hospital? Please specify the distance and whether you are using Kilometres or Miles. |
| Distance |
| KM/Miles |
| This question requires an answer. |
| How long does it take you to travel to your specialist PH centre/hospital (each way)? |
| Less than 30 minutes |
| 30 – 60 minutes |
| 1 – 2 hours |
| 2 – 3 hours |
| More than 3 hours |
| This question requires an answer. |
| Approximately, how much does the return journey to the centre/hospital usually cost? Please include petrol/gas, parking, public transport costs, and any other costs incurred for both yourself and the person who may accompany you. Please specify the cost and the currency you are using. If you do not know the cost, please skip this question. |
| Cost |
| Currency |
| How difficult or stressful do you find visiting your PH centre/hospital for appointments? |
| Not at all |
| A little |
| Somewhat |
| Very |
| This question requires an answer. |
| Do you attend most of your appointments in person or remotely (online/by telephone)? |
| All of my appointments are in person |
| Most of my appointments are in person |
| My appointments are about half in person and half online or by telephone |
| Most of my appointments are online or by telephone |
| All of my appointments are online or by telephone |
| This question requires an answer. |
| If some things that normally take place during a visit could be done from home, such as answering questions about symptoms, would you be happy for this to happen via telephone / video call / other online format instead? |
| Yes I would be happy to have telephone/video calls |
| Yes but I would still like face-to-face visits for other things |
| No I would not be happy to have telephone/video calls |
| This question requires an answer. |
| How good is the communication between the experts at the specialist centre and your GP/local consultant/local doctor? For example, can you have blood taken at your GP/local consultant/local doctor for the specialist centre to analyse |
| There is good communication between local services and the specialist centre |
| There is not good communication between local services and the specialist centre |
| I am not sure |
| This question requires an answer. |
| Do you feel you fully understand the information your healthcare provider gives you? |
| Yes, I usually understand the information from my healthcare provider |
| I usually understand some of the information from my healthcare provider |
| No, I often do not understand the information from my healthcare provider |
| This question requires an answer. |
| Do you think the results from your medical checkups generally reflect how you feel your PH affects you? (For example, do you feel better or worse than your test results show?) |
| They never reflect how I feel |
| They often do not reflect how I feel |
| They sometimes reflect how I feel |
| They often reflect how I feel |
| They always reflect how I feel |
| I am not sure |
| This question requires an answer. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 2 of 3 sections</strong></span> |
| Section 3: Impact of Pulmonary Hypertension (PH) on Quality of Life |
| <strong>Pulmonary hypertension (PH) often impacts a patient’s quality of life. This impact differs from person to person. In this section, we would like to find out how your PH influences everyday activities, emotions and your relationships. Some of the questions are optional so please leave these questions blank if they do not apply to you.</strong> |
| On a scale of 1-5 (with 1 being significantly worse and 5 being fully recovered), how much do you think your PH has changed since your diagnosis? |
| Please enter a whole number between {0} and {1}. |
| 1 |
| 5 |
| This question requires an answer. |
| How often does pulmonary hypertension (PH) affect the following activities/aspects of your life? |
| Getting dressed/taking a shower |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Walking a short distance/climbing a flight of stairs |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| Not applicable (I am not mobile) |
| This question requires an answer. |
| Dealing with domestic work/household chores/cooking/shopping |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very often |
| How you spend your free time (eg. socialising, hobby, travelling, playing with your children) |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very often |
| This question requires an answer. |
| (If relevant) My sexual relationships |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very often |
| N/A |
| If you feel that your pulmonary hypertension (PH) has had a negative impact on your quality of life, who would you consider discussing this with? Choose all that are applicable |
| Pulmonary Hypertension (PH) Specialist |
| Other Specialists |
| Family doctor/GP |
| Counsellor/psychologist |
| Nurse |
| Patient Organisation |
| Significant Other/Life Partner |
| Family/friends |
| Please enter a comment. |
| Other (please specify) |
| (If relevant) I worry about my health if I become pregnant and how my PH would affect my pregnancy. |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very often |
| Use this space for additional comments |
| <strong>In some cases, pulmonary hypertension can affect someone’s ability to work. This can have effects on their quality of life.</strong> |
| Does your employer/school know about your PH? Are they supportive? |
| Yes, my employer/school knows about my PH and they are supportive |
| Yes, my employer/school knows about my PH but they are not supportive |
| No, my employer/school does not know about my PH |
| N/A |
| This question requires an answer. |
| Has your ability to work/go to school been negatively impacted since diagnosis? |
| Yes, totally |
| Yes, partially |
| No, but my working conditions/occupation have changed |
| No |
| Not relevant (e.g. I was not working prior to being diagnosed with pulmonary hypertension (PH)) |
| This question requires an answer. |
| With whom would you consider discussing the impact pulmonary hypertension (PH) has on your ability to work / learn with? Choose all that are applicable. |
| Pulmonary Hypertension (PH) Specialist |
| Other Specialists |
| Family doctor/GP |
| Counsellor/psychologist |
| Nurse |
| Patient Organisation |
| Significant Other/Life Partner |
| Family/friends |
| Please enter a comment. |
| Other (please specify) |
| <strong>Living with pulmonary hypertension can be hard at times. This can affect your feelings and emotions as well as your relationships with those around you. In this part, we would like to understand how your PH has affected your emotions and relationships recently.</strong> |
| In the last month, have you experienced any of the following, particularly as a result of your pulmonary hypertension? |
| Low self-esteem/confidence |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling isolated/no desire to socialise |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Fearful/frightened |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling angry/frustrated |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling misunderstood |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feelings of guilt/embarrassment/hopelessness |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Challenges in maintaining a healthy diet |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Sleep disorders/difficulties |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Lack of concentration/difficulty with remembering things or talking/thinking more slowly |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Fidgety/restless/stressed |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| With whom would you consider discussing any of the emotions listed above? Choose all that are applicable |
| Pulmonary Hypertension (PH) Specialist |
| Other Specialists |
| Family doctor/GP |
| Counsellor/psychologist |
| Nurse |
| Patient Organisation |
| Significant Other/Life Partner |
| Family/friends |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Use this space for additional comments |
| <strong>Patient associations are a very useful way to get more information and help regarding your pulmonary hypertension. If you are not a member of one or haven’t heard of one before please feel free to ask your Doctor/GP/Nurse at your next appointment.</strong> |
| Are you currently part of a national patient <em>pulmonary hypertension</em> association (e.g. PHA Canada, PHA South Africa, PHA UK)? |
| Yes |
| No |
| This question requires an answer. |
| What do you find most useful about being a part of a patient association? Choose all that are applicable |
| Information/education for patients and their friends/family |
| Patient meetings/support groups (peer-to-peer support) |
| 24/7 phone helpline |
| Help with social support applications |
| Help with travel arrangements |
| Help with access to treatment |
| Access to helpful devices, e.g. oxygen concentrator, medical watch, special scooter |
| Help with communication between you and your healthcare provider |
| Access to an informative website |
| Access to a regular magazine |
| Awareness activities |
| Financial support in emergencies |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Use this space for additional comments. Please include anything you would like from a patient organisation that might not be currently offered. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 3 of 3 sections</strong></span> |
| Final Comments |
| <strong>Thank you very much for completing this questionnaire. The results gathered are extremely important to help improve the quality of life of patients living with PH. The results of this questionnaire will be published in a scientific journal (in print and online) and presented at international conferences. A lay summary will be made available via Pulmonary Hypertension Associations to patients.<br><br>Understanding your experience is key to developing international guidelines and influencing the direction of future research, to improve care and outcomes for patients globally.</strong> |
| If you would like to be further involved in research (e.g. doing more questionnaires like this one) please leave your details below. If not, please leave blank and click next. |
| Name |
| Company |
| Address |
| Address 2 |
| City/Town |
| State/Province |
| ZIP/Postal Code |
| Country |
| Email Address |
| Phone Number |
| Another purpose of this questionnaire is to raise awareness of pulmonary hypertension. For this reason, we would like to ask if you would be willing to be contacted to share your story publicly. If so, please leave your details below. If not, please leave blank and click next. |
| Name |
| Company |
| Address |
| Address 2 |
| City/Town |
| State/Province |
| ZIP/Postal Code |
| Country |
| Email Address |
| Phone Number |
| <strong>Please remember that your pulmonary hypertension (PH) Patient Association is always there to help and support you. Pulmonary Hypertension (PH) is not a well-known disease. Patients, and the people close to them, encounter many challenges that the general population are not aware of. Therefore, be assertive in getting answers to questions and issues that concern you. Be active in seeking help and solutions.</strong> |
| <strong>For the remainder of the survey, the person you care for with pulmonary hypertension will be referred to as ‘the patient’.</strong> |
| What country does the patient you care for currently live in? |
| Afghanistan |
| Albania |
| Algeria |
| American Samoa |
| Andorra |
| Angola |
| Antigua and Barbuda |
| Argentina |
| Armenia |
| Aruba |
| Australia |
| Austria |
| Azerbaijan |
| Bahamas, The |
| Bahrain |
| Bangladesh |
| Barbados |
| Belarus |
| Belgium |
| Belize |
| Benin |
| Bermuda |
| Bhutan |
| Bolivia |
| Bosnia and Herzegovina |
| Botswana |
| Brazil |
| British Virgin Islands |
| Brunei Darussalam |
| Bulgaria |
| Burkina Faso |
| Burundi |
| Cabo Verde |
| Cambodia |
| Cameroon |
| Canada |
| Cayman Islands |
| Central African Republic |
| Chad |
| Channel Islands |
| Chile |
| China |
| Colombia |
| Comoros |
| Congo, Dem. Rep. |
| Congo, Rep. |
| Costa Rica |
| Cote d’Ivoire |
| Croatia |
| Cuba |
| Curacao |
| Cyprus |
| Czechia |
| Denmark |
| Djibouti |
| Dominica |
| Dominican Republic |
| Ecuador |
| Egypt, Arab Rep. |
| El Salvador |
| Equatorial Guinea |
| Eritrea |
| Estonia |
| Eswatini |
| Ethiopia |
| Faroe Islands |
| Fiji |
| Finland |
| France |
| French Polynesia |
| Gabon |
| Gambia, The |
| Georgia |
| Germany |
| Ghana |
| Gibraltar |
| Greece |
| Greenland |
| Grenada |
| Guam |
| Guatemala |
| Guinea |
| Guinea-Bissau |
| Guyana |
| Haiti |
| Honduras |
| Hong Kong SAR, China |
| Hungary |
| Iceland |
| India |
| Indonesia |
| Iran, Islamic Rep. |
| Iraq |
| Ireland |
| Isle of Man |
| Israel |
| Italy |
| Jamaica |
| Japan |
| Jordan |
| Kazakhstan |
| Kenya |
| Kiribati |
| Korea, Dem. People’s Rep. |
| Korea, Rep. |
| Kosovo |
| Kuwait |
| Kyrgyz Republic |
| Lao PDR |
| Latvia |
| Lebanon |
| Lesotho |
| Liberia |
| Libya |
| Liechtenstein |
| Lithuania |
| Luxembourg |
| Macao SAR, China |
| Madagascar |
| Malawi |
| Malaysia |
| Maldives |
| Mali |
| Malta |
| Marshall Islands |
| Mauritania |
| Mauritius |
| Mexico |
| Micronesia, Fed. Sts. |
| Moldova |
| Monaco |
| Mongolia |
| Montenegro |
| Morocco |
| Mozambique |
| Myanmar |
| Namibia |
| Nauru |
| Nepal |
| Netherlands |
| New Caledonia |
| New Zealand |
| Nicaragua |
| Niger |
| Nigeria |
| North Macedonia |
| Northern Mariana Islands |
| Norway |
| Oman |
| Pakistan |
| Palau |
| Panama |
| Papua New Guinea |
| Paraguay |
| Peru |
| Philippines |
| Poland |
| Portugal |
| Puerto Rico |
| Qatar |
| Romania |
| Russian Federation |
| Rwanda |
| Samoa |
| San Marino |
| Sao Tome and Principe |
| Saudi Arabia |
| Senegal |
| Serbia |
| Seychelles |
| Sierra Leone |
| Singapore |
| Sint Maarten (Dutch part) |
| Slovak Republic |
| Slovenia |
| Solomon Islands |
| Somalia |
| South Africa |
| South Sudan |
| Spain |
| Sri Lanka |
| St. Kitts and Nevis |
| St. Lucia |
| St. Martin (French part) |
| St. Vincent and the Grenadines |
| Sudan |
| Suriname |
| Sweden |
| Switzerland |
| Syrian Arab Republic |
| Tajikistan |
| Tanzania |
| Thailand |
| Timor-Leste |
| Togo |
| Tonga |
| Trinidad and Tobago |
| Tunisia |
| Turkiye |
| Turkmenistan |
| Turks and Caicos Islands |
| Tuvalu |
| Uganda |
| Ukraine |
| United Arab Emirates |
| United Kingdom |
| United States |
| Uruguay |
| Uzbekistan |
| Vanuatu |
| Venezuela, RB |
| Vietnam |
| Virgin Islands (U.S.) |
| West Bank and Gaza |
| Yemen, Rep. |
| Zambia |
| Zimbabwe |
| This question requires an answer. |
| What is the patient’s year of birth? |
| 1920 |
| 1921 |
| 1922 |
| 1923 |
| 1924 |
| 1925 |
| 1926 |
| 1927 |
| 1928 |
| 1929 |
| 1930 |
| 1931 |
| 1932 |
| 1933 |
| 1934 |
| 1935 |
| 1936 |
| 1937 |
| 1938 |
| 1939 |
| 1940 |
| 1941 |
| 1942 |
| 1943 |
| 1944 |
| 1945 |
| 1946 |
| 1947 |
| 1948 |
| 1949 |
| 1950 |
| 1951 |
| 1952 |
| 1953 |
| 1954 |
| 1955 |
| 1956 |
| 1957 |
| 1958 |
| 1959 |
| 1960 |
| 1961 |
| 1962 |
| 1963 |
| 1964 |
| 1965 |
| 1966 |
| 1967 |
| 1968 |
| 1969 |
| 1970 |
| 1971 |
| 1972 |
| 1973 |
| 1974 |
| 1975 |
| 1976 |
| 1977 |
| 1978 |
| 1979 |
| 1980 |
| 1981 |
| 1982 |
| 1983 |
| 1984 |
| 1985 |
| 1986 |
| 1987 |
| 1988 |
| 1989 |
| 1990 |
| 1991 |
| 1992 |
| 1993 |
| 1994 |
| 1995 |
| 1996 |
| 1997 |
| 1998 |
| 1999 |
| 2000 |
| 2001 |
| 2002 |
| 2003 |
| 2004 |
| 2005 |
| 2006 |
| 2007 |
| 2008 |
| 2009 |
| 2010 |
| 2011 |
| 2012 |
| 2013 |
| 2014 |
| 2015 |
| 2016 |
| 2017 |
| 2018 |
| 2019 |
| 2020 |
| 2021 |
| 2022 |
| 2023 |
| This question requires an answer. |
| What sex was the patient assigned at birth? |
| Female |
| Male |
| Prefer not to say |
| This question requires an answer. |
| <strong>There are many different types of pulmonary hypertension (PH). In this part of the questionnaire, we would like to better understand the patient’s condition by asking the type of PH the patient has been diagnosed with. You may not know this straight away so it might be useful to look at their clinical letter to see what their doctor has written about the type of PH they have.</strong> |
| Had the patient heard about pulmonary hypertension prior to their diagnosis? |
| Yes |
| No |
| This question requires an answer. |
| Which one of the following diagnoses describes the patient’s PH best? It may be useful to look at their clinical letter now to help answer this question. |
| Group 1 – Pulmonary arterial hypertension (PAH) |
| Group 2 – PH associated with left heart disease |
| Group 3 – PH associated with lung disease (Including COPD, Interstitial/fibrotic lung disease, other lung diseases) |
| Group 4 – Chronic thromboembolic pulmonary hypertension (CTEPH) |
| Group 5 – PH with unclear and/or multifactorial mechanisms (e.g. haematologic disorders, sarcoidosis, or systemic disorders) |
| I do not know/I am not sure |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Within ‘Group 1 – pulmonary arterial hypertension (PAH)’, which of the following diagnoses describes the patient’s PH more specifically? Again, it may be useful to look at their clinical letter now to help you. |
| Idiopathic pulmonary arterial hypertension (iPAH) |
| Heritable/genetic pulmonary arterial hypertension (hPAH) |
| Pulmonary arterial hypertension associated with drugs and toxins |
| Pulmonary arterial hypertension associated with connective tissue disease |
| Pulmonary arterial hypertension associated with HIV infection |
| Pulmonary arterial hypertension associated with liver disease |
| Pulmonary arterial hypertension associated with congenital heart disease |
| Pulmonary arterial hypertension associated with schistosomiasis |
| Pulmonary Arterial Hypertension with features of venous/capillary involvement (PVOD/PCH) |
| I do not know/I am not sure |
| This question requires an answer. |
| Has the patient had genetic testing to help determine their PH diagnosis? |
| Yes and the patient’s relatives have also had genetic testing |
| Yes but the patient’s relatives have not had genetic testing |
| Yes but the patient does not know if their relatives have had genetic testing |
| No, the patient has not had genetic testing |
| This question requires an answer. |
| Why has the patient not had genetic testing? |
| It has not been offered to them |
| They cannot/do not want to pay as it is not reimbursed |
| They would prefer not to know about their genetics |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Does the patient know the result of this genetic testing? |
| Yes, they have been informed of the results |
| No, they are still waiting on the results. |
| This question requires an answer. |
| Please specify how long the patient has been waiting for the results of the genetic testing. |
| Less than one month |
| 1-6 months |
| 6-12 months |
| Longer than 12 months |
| This question requires an answer. |
| <strong>Pulmonary endarterectomy surgery (PEA) is an operation to remove old blood clots from the pulmonary arteries in the lungs.</strong> |
| Has the patient been offered pulmonary endarterectomy surgery (PEA)? |
| Yes, they have been offered PEA surgery |
| Yes, but they do not want PEA surgery |
| No, they have not been offered PEA surgery |
| This question requires an answer. |
| Has the patient had PEA surgery? |
| Yes |
| No |
| This question requires an answer. |
| How long did the patient have to wait between diagnosis of CTEPH and having the surgery done? |
| Less than 1 month |
| 1-6 months |
| 6-12 months |
| Longer than 12 months |
| This question requires an answer. |
| On a scale from 1-5 (with 1 being significantly worse and 5 being fully recovered) how does the patient feel <em>longer term</em> since the PEA surgery? |
| Please enter a whole number between {0} and {1}. |
| 1 |
| 5 |
| <strong>Balloon pulmonary angioplasty (BPA) is a procedure that involves a fine wire being inserted into blood vessels in the lungs, guiding a tiny balloon into position. The balloon is inflated, to around the size of a pea, for a few seconds to push the blockage aside and restore blood flow to the lung tissue. The balloon is then deflated and removed. This is usually done over multiple sessions.</strong> |
| Has the patient been offered balloon pulmonary angioplasty (BPA)? |
| Yes, they have been offered BPA |
| Yes, but they do not want to have BPA |
| No, they have not been offered BPA |
| This question requires an answer. |
| How many sessions of balloon pulmonary angioplasty (BPA) has the patient had in total? |
| 1-5 |
| 6-10 |
| More than 10 |
| This question requires an answer. |
| How long did the patient have to wait between diagnosis of CTEPH and having the first session of balloon pulmonary angioplasty (BPA)? |
| Less than 1 month |
| 1 – 6 months |
| 6 -12 months |
| 1 – 2 years |
| Over 2 years |
| This question requires an answer. |
| On a scale of 1-5 (with 1 being significantly worse and 5 being fully recovered), how does the patient feel since finishing their BPA sessions (if applicable)? |
| Please enter a whole number between {0} and {1}. |
| 1 |
| 5 |
| Approximately, how long did it take to get the patient’s diagnosis from when their symptoms first started? |
| Less than 1 month |
| 1 – 6 months |
| 6 – 12 months |
| 1 – 2 years |
| 2 – 5 years |
| Over 5 years |
| This question requires an answer. |
| <strong>There are many types of medications used to treat pulmonary hypertension. Here we would like to understand more about the medication that the patient is taking and their experience of taking it. They may take multiple medications, in this case choose all that are applicable.</strong> |
| What are the name(s) of the PH medication(s) that the patient is currently taking? It may be useful to look at the patient’s prescription now to help answer this question. Sometimes there are multiple brand names for the same drug, some of which are stated below. Please select all that apply. |
| Ambrisentan (Letairis) |
| Amlodipine (Istin) |
| Bosentan (Tracleer) |
| Diltiazem (Adizem, Angitil, Dilcardia, Retalzem, Slozem, Tildiem, Uard, Viazem, Zemtard) |
| Epoprostenol (Flolan) |
| Epoprostenol (Veletri) |
| Iloprost (Ventavis) |
| Macitentan (Opsumit) |
| Nifedipine (Adalat, Adanif, Adipine, Coracten, Dexipress, Fortipine, Neozipine, Nidef, Nifedipress, Tensipine, Valni) |
| Nircadipine (Cardene) |
| Riociguat (Adempas) |
| Sildenafil (Revatio) |
| Tadalafil (Cialis) |
| Treprostinil (Remodulin) |
| Treprostinil (Tyvaso) |
| I am not sure/the patient would prefer not to answer |
| Please enter a comment. |
| Other including drugs as part of a clinical trial (please specify) |
| This question requires an answer. |
| Is the patient on blood thinning medication (anti-coagulants)?<span id=”mce_1_start” style=”line-height: 0px;”></span> |
| Yes |
| No |
| This question requires an answer. |
| What kind of blood thinning medication (anti-coagulant) is the patient taking? It may be useful to look at the patient’s prescription to help answer this question. Choose all that apply. |
| Warfarin or Acenocoumarol tablets – these require regular blood tests to check the dose |
| Dabigatran, rivaroxaban, apixaban, edoxaban or betrixaban tablets |
| Injections under the skin (e.g. heparin drugs) – there are lots of types |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Has the patient experienced any side effects<em> that they think are</em> due to their PH medication in the last 6 months? |
| Yes |
| No |
| This question requires an answer. |
| What side effects of their medication have they experienced in the last 6 months? Choose all that are applicable. |
| Stomach upset or nausea |
| Heartburn |
| Headache |
| Nosebleeds |
| Skin flushing |
| Muscle aches |
| Trouble sleeping |
| Shortness of breath |
| Nasal congestion |
| I do not know/I am not sure |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| In the last 6 months, has the patient had a discussion with their healthcare provider about possibly changing their medication due to side effects? |
| Yes |
| No |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Does the patient ever use oxygen? |
| Yes |
| No |
| This question requires an answer. |
| Does the patient use a portable (ie. ready for travelling) oxygen concentrator? |
| Yes |
| No |
| This question requires an answer. |
| Has the patient had a heart and/or lung transplant? |
| Yes – heart transplant |
| Yes – lung transplant |
| Yes – heart and lung transplant |
| No |
| This question requires an answer. |
| Is the patient currently awaiting a heart and/or lung transplant? |
| Yes – heart transplant |
| Yes – lung transplant |
| Yes – heart and lung transplant |
| No, the patient is not awaiting a transplant |
| This question requires an answer. |
| Does the patient have an official disabled status due to their PH? Examples might include having a disabled badge for car parking or receiving disability benefits. |
| Yes |
| No |
| This question requires an answer. |
| What are the benefits of having disabled status in the patient’s country? Please select all that apply |
| Special care |
| Parking |
| Financial benefits (eg.state subsidy, tax allowance) |
| Reduced working hours |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| <strong>The next set of questions relate to research to find new drugs for PH which is vital to improve the outcomes for patients over time.</strong> |
| Has the patient ever taken part in a clinical research trial (which involved research into a drug or device for PH)? |
| Yes |
| No |
| This question requires an answer. |
| What was the patient’s overall experience of the trial like? |
| Very bad |
| Bad |
| No opinion |
| Good |
| Very good |
| This question requires an answer. |
| Would the patient participate again in a clinical trial that involved taking a drug for pulmonary hypertension? |
| Definitely not |
| Probably not |
| Unsure |
| Probably yes |
| Definitely yes |
| This question requires an answer. |
| Would the patient ever consider taking part in a clinical trial? |
| Yes |
| Please enter a comment. |
| No – please specify their reasons for this decision |
| This question requires an answer. |
| Would the patient be willing to allow researchers to access and use their anonymous healthcare information that has already been collected as part of their routine care (e.g. GP records)? |
| Yes |
| No |
| This question requires an answer. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 1 of 3 sections</strong></span> |
| <strong>Section 2: Monitoring Your Pulmonary Hypertension</strong> |
| <strong>Pulmonary hypertension is a chronic (long term) condition which needs monitoring over time. Patients are now increasingly monitoring their own progress. Different people do this in different ways. In this section we would like to understand how the patient monitors their PH.</strong> |
| Does the patient monitor their PH themself (i.e self-monitor) and/or record their health status? |
| Yes |
| No |
| Used to but not anymore |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How does the patient monitor their pulmonary hypertension? |
| Keep a record on paper/calendar |
| Use a sport/health application on a smartphone/tablet/smartwatch |
| Use a specialised PH application on a smartphone/tablet/smartwatch |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Does the patient share the information collected with the clinical team looking after their PH? |
| Yes regularly |
| Yes sometimes |
| No but they would be happy to |
| No and they would prefer not to |
| This question requires an answer. |
| Does the patient own a smartphone (i.e. a phone with internet access)? |
| Yes, they have an iPhone (Apple) |
| Yes, they have an Android phone (including Samsung, Sony, Huawei, LG, OnePlus, Google) |
| They have a mobile phone but it isn’t a smartphone |
| They do not own a mobile phone |
| This question requires an answer. |
| Does the patient own a wearable activity tracker (e.g. a smartwatch)? |
| Yes, they have a smartwatch |
| No, they use a phone/another method to track their activity |
| No, they do not track their activity |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| In general, how confident does the patient feel using apps on a mobile phone or tablet device to monitor their condition? (An ‘app’ is a software application on a device that accesses the internet). |
| Not confident |
| Somewhat confident |
| Quite confident |
| Very confident |
| This question requires an answer. |
| A 6-Minute Walk Test is where a patient is asked to walk as far as they can in 6 minutes. If you/the patient were trained to measure their distance with an app on a smartphone or digital device, would you/the patient feel able to complete a 6-Minute Walk Test outside of the hospital (e.g. walking outside your house)? |
| Yes |
| No |
| I’m not sure |
| This question requires an answer. |
| How active does the patient consider themself to be? |
| Very inactive |
| Quite inactive |
| Neither active or inactive |
| Quite active |
| Very active |
| This question requires an answer. |
| <strong>Patient Reported Outcome (PRO) questionnaires are forms filled out by patients to assess how they feel about living with PH and their quality of life. Doctors often ask PH patients to fill out a PRO questionnaire to keep track of their patient’s health </strong><strong>status. Alternatively, people living with PH might fill out a PRO questionnaire by themselves to self-monitor their health status. Here you will find questions about PRO questionnaires and how the patient uses them.</strong> |
| Has the patient ever filled out a Patient Reported Outcome (PRO) questionnaire to assess their condition? |
| Yes |
| No |
| This question requires an answer. |
| Which of the following PRO questionnaire(s) has the patient filled out? Please select all that apply. There are pictures of the different types for your reference. |
| Other/I am not sure (see below) |
| CAMPHOR |
| EMPHASIS-10 |
| PAH-SYMPACT |
| LPHQ |
| If you chose ‘other’ in the previous question, please tell us which other PRO questionnaire(s) the patient has filled out. If you are not sure, please leave blank. |
| How often does the patient fill out patient reported outcome (PRO) questionnaires? Please choose all that apply. |
| Only once when they were diagnosed |
| Every time they have an appointment |
| At regular intervals (e.g. once a year) |
| When they participated in a clinical trial |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Who gave the patient the PRO questionnaire(s) to fill out? Please choose all that apply. |
| My doctor gave it to them |
| My nurse gave it to them |
| A researcher gave it to them |
| A patient organisation sent it to them |
| They found it themselves on the Internet |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How did the patient complete the PRO questionnaire(s)? Please choose all that apply. |
| Via a website online |
| On paper |
| Via an app |
| Please enter a comment. |
| Other (please specify) |
| On average, how long does it take to complete a PRO questionnaire? |
| Less than 5 minutes |
| 5 to 10 minutes |
| 10 to 20 minutes |
| More than 20 minutes |
| This question requires an answer. |
| Has the patient received any feedback from their medical team or did they talk about the patient reported outcome PRO questionnaire(s) they filled in? |
| The questionnaire was collected by the patient’s medical team but they have not |
| received any further information |
| The patient got feedback from their medical team about it |
| The patient collected the data solely to self-monitor their condition |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Has the patient’s treatment ever been altered based on their answers in a PRO<br>questionnaire? |
| Yes |
| No |
| I’m not sure |
| This question requires an answer. |
| Does the patient think the questions cover the ways in which PH affects their life? |
| Yes (they cover all ways in which PH affects their life) |
| Mostly (they cover some of the ways in which PH affects their life) |
| No (they do not cover many of the ways PH affects their life) |
| Not at all (they cover none of the ways PH affects their life) |
| N/A (PH does not affect their life) |
| This question requires an answer. |
| Are there any ways that PH affects the patient’s life that are not included in the PRO questionnaire(s) that they have completed? (please give details) |
| <strong>As well as self-monitoring pulmonary hypertension, many people attend appointments at specialised PH clinics. This section has questions about the specialised centre/hospital appointments the patient may attend regarding their pulmonary hypertension.</strong> |
| Is the patient currently under the care of a specialist centre/hospital? |
| Yes |
| No |
| This question requires an answer. |
| How long has the patient been under the care of a specialist centre/hospital? |
| Less than 1 month |
| 1 – 6 months |
| 6 -12 months |
| 1 – 2 years |
| 2 – 5 years |
| More than 5 years |
| This question requires an answer. |
| Is the cost of the healthcare provided by this specialist centre reimbursed or paid for by the patient’s healthcare provider and/or the national insurance fund (e.g. NHS in the UK)? |
| Yes, it is reimbursed/paid for in full |
| Yes, it is partially reimbursed/paid for |
| No, it is not reimbursed/paid for |
| I am not sure |
| This question requires an answer. |
| Does the patient’s centre provide rehabilitation services or cooperate with centres providing such services? |
| Yes |
| No |
| I am not sure |
| This question requires an answer. |
| Is this rehabilitation reimbursed/paid for by the patient’s healthcare provider and/or the national insurance fund? |
| Yes, it is reimbursed/paid for in full |
| Yes, it is partially reimbursed/paid for |
| No, it is not reimbursed/paid for |
| I am not sure |
| This question requires an answer. |
| Approximately how frequently does the patient see their doctor at the specialist centre? |
| More than once a month |
| Once a month |
| Once every 2-3 months |
| Once every 3-6 months |
| Once every 6-12 months |
| Less than once every 12 months |
| This question requires an answer. |
| How long does the patient’s average visit take in the specialist PH hospital (not involving travel to and from the centre)? |
| Less than 30 minutes |
| 30-60 minutes |
| 1-2 hours |
| 2-4 hours |
| 4-6 hours |
| More than 6 hours |
| This question requires an answer. |
| Does the patient normally travel to a PH centre with a family member/friend/caregiver such as yourself? |
| Yes, to help the patient with travelling arrangements |
| Yes, for emotional support/helping with information given to the patient during the visit in PH centre |
| Yes, for help travelling and for emotional support/helping with the information |
| Yes, but for other reasons |
| No, the patient travels alone |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How does the patient normally travel to their appointments at their specialist PH hospital? |
| By car |
| By public transportation (eg. train, bus or metro/underground) |
| By taxi / shared ride service (Uber, Lyft, etc.) |
| By hospital transport |
| By air |
| Please enter a comment. |
| Other (e.g. walk, please specify) |
| This question requires an answer. |
| Approximately how far away does the patient live from their specialist PH centre/hospital? Please specify the distance and whether you are using Kilometres or Miles. |
| Distance |
| KM/Miles |
| This question requires an answer. |
| How long does it take the patient to travel to their specialist PH centre/hospital (each way)? |
| Less than 30 minutes |
| 30 – 60 minutes |
| 1 – 2 hours |
| 2 – 3 hours |
| More than 3 hours |
| This question requires an answer. |
| Approximately, how much does the return journey to the centre/hospital usually cost? Please include petrol/gas, parking, public transport costs, and any other costs incurred for both the patient and the person who may accompany them. Please specify the cost and the currency you are using. If they do not know the cost, please skip this question. |
| Cost |
| Currency |
| How difficult or stressful does the patient find visiting your PH centre/hospital for appointments? |
| Not at all |
| A little |
| Somewhat |
| Very |
| This question requires an answer. |
| Does the patient attend most of their appointments in person or remotely (online/by telephone)? |
| All of the patient’s appointments are in person |
| Most of the patient’s appointments are in person |
| The patient’s appointments are about half in person and half online or by telephone |
| Most of the patient’s appointments are online or by telephone |
| All of the patient’s appointments are online or by telephone |
| This question requires an answer. |
| If some things that normally take place during a visit could be done from home, such as answering questions about symptoms, would the patient be happy for this to happen via telephone / video call / other online format instead? |
| Yes they would be happy to have telephone/video calls |
| Yes but they would still like face-to-face visits for other things |
| No they would not be happy to have telephone/video calls |
| This question requires an answer. |
| How good is the communication between the experts at the specialist centre and your GP/local consultant/local doctor? For example, can the patient have blood taken at your GP/local consultant/local doctor for the specialist centre to analyse. |
| There is good communication between local services and the specialist centre |
| There is not good communication between local services and the specialist centre |
| I am not sure |
| This question requires an answer. |
| Does the patient feel they fully understand the information your healthcare provider gives them? |
| Yes, they usually understand the information from my healthcare provider |
| They usually understand some of the information from my healthcare provider |
| No, they often do not understand the information from my healthcare provider |
| This question requires an answer. |
| Does the patient think the results from their medical checkups generally reflect how they feel their PH affects them? (For example, do they feel better or worse than their test results show?) |
| They never reflect how the patient feels |
| They often do not reflect how the patient feels |
| They sometimes reflect how the patient feels |
| They often reflect how the patient feels |
| They always reflect how the patient feels |
| This question requires an answer. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 2 of 3 sections</strong></span> |
| <strong>Section 3: Impact of Pulmonary Hypertension (PH) on Quality of Life</strong> |
| <strong>Pulmonary hypertension (PH) often impacts a patient’s quality of life. This impact differs from person to person. In this section, we would like to find out how the patient’s PH influences everyday activities, emotions and your relationships. Some of the questions are optional so please leave these questions blank if they do not apply to the patient.</strong> |
| On a scale of 1-5 (with 1 being significantly worse and 5 being fully recovered), how much does the patient think their PH has changed since their diagnosis? |
| Please enter a whole number between {0} and {1}. |
| 1 |
| 5 |
| This question requires an answer. |
| How often does pulmonary hypertension (PH) affect the following activities/aspects of the patient’s life? |
| Getting dressed/taking a shower |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Walking a short distance/climbing a flight of stairs |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| N/A (the patient is not mobile) |
| This question requires an answer. |
| Dealing with domestic work/household chores/cooking/shopping |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| How the patient spends their free time (eg. socialising, hobby, travelling, playing with their children) |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| (If relevant) The patient’s sexual relationships |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| N/A |
| If the patient feels that their pulmonary hypertension (PH) has had a negative impact on their quality of life, who would the patient consider discussing this with? Choose all that are applicable. |
| Pulmonary Hypertension (PH) Specialist |
| Other Specialists |
| Family doctor/GP |
| Counsellor/psychologist |
| Nurse |
| Patient Organisation |
| Significant Other/Life Partner |
| Family/friends |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| (If relevant) the patient worries about their health if they become pregnant and how their PH would affect their pregnancy. |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| <strong>In some cases, pulmonary hypertension can affect someone’s ability to work. This can have effects on their quality of life.</strong> |
| Does the patient’s employer/school know about their PH? Are they supportive? |
| Yes, the patient’s employer/school knows about their PH and they are supportive |
| Yes, the patient’s employer/school knows about their PH but they are not supportive |
| No, the patient’s employer/school does not know about their PH |
| N/A |
| This question requires an answer. |
| Has the patient’s ability to work/go to school been negatively impacted since diagnosis? |
| Yes, totally |
| Yes, partially |
| No, but the patient’s working conditions/occupation have changed |
| No |
| Not relevant (e.g. the patient was not working prior to being diagnosed with |
| pulmonary hypertension (PH)) |
| This question requires an answer. |
| With whom would the patient consider discussing the impact pulmonary hypertension (PH) has on their ability to work / learn with? Choose all that are applicable. |
| Pulmonary Hypertension (PH) Specialist |
| Other Specialists |
| Family doctor/GP |
| Counsellor/psychologist |
| Nurse |
| Patient Organisation |
| Significant Other/Life Partner |
| Family/friends |
| Please enter a comment. |
| Other (please specify) |
| <strong>Living with pulmonary hypertension can be hard at times. This can affect a patient’s feelings and emotions as well as their relationships with those around them. In this part, we would like to understand how the patient’s PH has affected their emotions and relationships recently.</strong> |
| In the last month, has the patient experienced any of the following, particularly as a result of their pulmonary hypertension? |
| Low self-esteem/confidence |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling isolated/no desire to socialise |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Little pleasure in doing activities |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Fearful/frightened |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling angry/frustrated |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling misunderstood |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feelings of guilt/embarrassment/hopelessness |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Challenges in maintaining a healthy diet |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Sleep disorders/difficulties |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Lack of concentration/difficulty with remembering things or talking/thinking more slowly |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Fidgety/restless/stressed |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| With whom would the patient consider discussing any of the emotions listed above? Choose all that are applicable |
| Pulmonary Hypertension (PH) Specialist |
| Other Specialists |
| Family doctor/GP |
| Counsellor/psychologist |
| Nurse |
| Patient Organisation |
| Significant Other/Life Partner |
| Family/friends |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Use this space for additional comments: |
| <strong>Patient associations are a very useful way to get more information and help regarding pulmonary hypertension. If the patient is not a member of one or haven’t heard of one before please feel free to ask their Doctor/GP/Nurse at their next appointment.</strong> |
| Is the patient currently part of a national patient <em>pulmonary hypertension</em> association (e.g. PHA Canada, PHA South Africa, PHA UK)? |
| Yes |
| No |
| This question requires an answer. |
| What do you/the patient find most useful about being a part of a patient association? Choose all that are applicable. |
| Information/education for patients and their friends/family |
| Patient meetings/support groups (peer-to-peer support) |
| 24/7 phone helpline |
| Help with social support applications |
| Help with travel arrangements |
| Help with access to treatment |
| Access to helpful devices, e.g. oxygen concentrator, medical watch, special scooter |
| Help with communication between you and your healthcare provider |
| Access to an informative website |
| Access to a regular magazine |
| Awareness activities |
| Financial support in emergencies |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Use this space for additional comments. Please include anything you/the patient would like from a patient organisation that might not be currently offered. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 3 of 3 sections</strong></span> |
| Final Comments |
| <strong>Thank you very much for completing this questionnaire. The results gathered are extremely important to help improve the quality of life of patients living with PH. The results of this questionnaire will be published in a scientific journal (in print and online) and presented at international conferences. A lay summary will be made available via Pulmonary Hypertension Associations to patients.<br><br>Understanding your experience is key to developing international guidelines and influencing the direction of future research, to improve care and outcomes for patients globally.</strong> |
| If you/the patient would like to be further involved in research (e.g. doing more questionnaires like this one) please leave your details below. If not, please leave blank and click next. |
| Name |
| Company |
| Address |
| Address 2 |
| City/Town |
| State/Province |
| ZIP/Postal Code |
| Country |
| Email Address |
| Phone Number |
| Another purpose of this questionnaire is to raise awareness of pulmonary hypertension. For this reason, we would like to ask if you/the patient would be willing to be contacted to share your story publicly. If so, please leave your details below. If not, please leave blank and click next. |
| Name |
| Company |
| Address |
| Address 2 |
| City/Town |
| State/Province |
| ZIP/Postal Code |
| Country |
| Email Address |
| Phone Number |
| <strong>Please remember that your pulmonary hypertension (PH) Patient Association is always there to help and support you. Pulmonary Hypertension (PH) is not a well-known disease. Patients, and the people close to them, encounter many challenges that the general population are not aware of. Therefore, be assertive in getting answers to questions and issues that concern you. Be active in seeking help and solutions.</strong> |
| What country does your child live in? |
| Afghanistan |
| Albania |
| Algeria |
| American Samoa |
| Andorra |
| Angola |
| Antigua and Barbuda |
| Argentina |
| Armenia |
| Aruba |
| Australia |
| Austria |
| Azerbaijan |
| Bahamas, The |
| Bahrain |
| Bangladesh |
| Barbados |
| Belarus |
| Belgium |
| Belize |
| Benin |
| Bermuda |
| Bhutan |
| Bolivia |
| Bosnia and Herzegovina |
| Botswana |
| Brazil |
| British Virgin Islands |
| Brunei Darussalam |
| Bulgaria |
| Burkina Faso |
| Burundi |
| Cabo Verde |
| Cambodia |
| Cameroon |
| Canada |
| Cayman Islands |
| Central African Republic |
| Chad |
| Channel Islands |
| Chile |
| China |
| Colombia |
| Comoros |
| Congo, Dem. Rep. |
| Congo, Rep. |
| Costa Rica |
| Cote d’Ivoire |
| Croatia |
| Cuba |
| Curacao |
| Cyprus |
| Czechia |
| Denmark |
| Djibouti |
| Dominica |
| Dominican Republic |
| Ecuador |
| Egypt, Arab Rep. |
| El Salvador |
| Equatorial Guinea |
| Eritrea |
| Estonia |
| Eswatini |
| Ethiopia |
| Faroe Islands |
| Fiji |
| Finland |
| France |
| French Polynesia |
| Gabon |
| Gambia, The |
| Georgia |
| Germany |
| Ghana |
| Gibraltar |
| Greece |
| Greenland |
| Grenada |
| Guam |
| Guatemala |
| Guinea |
| Guinea-Bissau |
| Guyana |
| Haiti |
| Honduras |
| Hong Kong SAR, China |
| Hungary |
| Iceland |
| India |
| Indonesia |
| Iran, Islamic Rep. |
| Iraq |
| Ireland |
| Isle of Man |
| Israel |
| Italy |
| Jamaica |
| Japan |
| Jordan |
| Kazakhstan |
| Kenya |
| Kiribati |
| Korea, Dem. People’s Rep. |
| Korea, Rep. |
| Kosovo |
| Kuwait |
| Kyrgyz Republic |
| Lao PDR |
| Latvia |
| Lebanon |
| Lesotho |
| Liberia |
| Libya |
| Liechtenstein |
| Lithuania |
| Luxembourg |
| Macao SAR, China |
| Madagascar |
| Malawi |
| Malaysia |
| Maldives |
| Mali |
| Malta |
| Marshall Islands |
| Mauritania |
| Mauritius |
| Mexico |
| Micronesia, Fed. Sts. |
| Moldova |
| Monaco |
| Mongolia |
| Montenegro |
| Morocco |
| Mozambique |
| Myanmar |
| Namibia |
| Nauru |
| Nepal |
| Netherlands |
| New Caledonia |
| New Zealand |
| Nicaragua |
| Niger |
| Nigeria |
| North Macedonia |
| Northern Mariana Islands |
| Norway |
| Oman |
| Pakistan |
| Palau |
| Panama |
| Papua New Guinea |
| Paraguay |
| Peru |
| Philippines |
| Poland |
| Portugal |
| Puerto Rico |
| Qatar |
| Romania |
| Russian Federation |
| Rwanda |
| Samoa |
| San Marino |
| Sao Tome and Principe |
| Saudi Arabia |
| Senegal |
| Serbia |
| Seychelles |
| Sierra Leone |
| Singapore |
| Sint Maarten (Dutch part) |
| Slovak Republic |
| Slovenia |
| Solomon Islands |
| Somalia |
| South Africa |
| South Sudan |
| Spain |
| Sri Lanka |
| St. Kitts and Nevis |
| St. Lucia |
| St. Martin (French part) |
| St. Vincent and the Grenadines |
| Sudan |
| Suriname |
| Sweden |
| Switzerland |
| Syrian Arab Republic |
| Tajikistan |
| Tanzania |
| Thailand |
| Timor-Leste |
| Togo |
| Tonga |
| Trinidad and Tobago |
| Tunisia |
| Turkiye |
| Turkmenistan |
| Turks and Caicos Islands |
| Tuvalu |
| Uganda |
| Ukraine |
| United Arab Emirates |
| United Kingdom |
| United States |
| Uruguay |
| Uzbekistan |
| Vanuatu |
| Venezuela, RB |
| Vietnam |
| Virgin Islands (U.S.) |
| West Bank and Gaza |
| Yemen, Rep. |
| Zambia |
| Zimbabwe |
| This question requires an answer. |
| What is your child’s year of birth? |
| 1920 |
| 1921 |
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| 1923 |
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| 2021 |
| 2022 |
| 2023 |
| This question requires an answer. |
| What sex was your child assigned at birth? |
| Female |
| Male |
| Prefer not to say |
| This question requires an answer. |
| <strong>There are many different types of pulmonary hypertension (PH). In this part of the questionnaire, we would like to better understand your child’s condition by asking you the type of PH that your child has been diagnosed with. You may not know this straight away so it might be useful to look at their clinical letter to see what their doctor has written about the type of PH they have.</strong> |
| Had you heard about pulmonary hypertension prior to your child’s diagnosis? |
| Yes |
| No |
| This question requires an answer. |
| Which one of the following diagnoses describes your child’s PH best? It may be useful to look at their clinical letter now to help answer this question. |
| Group 1 – pulmonary arterial hypertension (PAH) |
| Group 2 – PH associated with left heart disease |
| Group 3 – PH associated with lung disease (Including COPD, Interstitial/fibrotic lung disease, other lung diseases) |
| Group 4 – Chronic thromboembolic pulmonary hypertension (CTEPH) |
| Group 5 – PH with unclear and/or multifactorial mechanisms (e.g. haematologic disorders, sarcoidosis, or systemic disorders). |
| I do not know/I am not sure |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Within ‘Group 1 – pulmonary arterial hypertension (PAH)’, which of the following diagnoses describes your child’s PH more specifically? Again, it may be useful to look at their clinical letter now to help you. |
| Idiopathic pulmonary arterial hypertension (iPAH) |
| Heritable/genetic pulmonary arterial hypertension (hPAH) |
| Pulmonary arterial hypertension associated with drugs and toxins |
| Pulmonary arterial hypertension associated with connective tissue disease |
| Pulmonary arterial hypertension associated with HIV infection |
| Pulmonary arterial hypertension associated with liver disease |
| Pulmonary arterial hypertension associated with congenital heart disease |
| Pulmonary arterial hypertension associated with schistosomiasis |
| Pulmonary Arterial Hypertension with features of venous/capillary involvement (PVOD/PCH) |
| Persistent pulmonary hypertension of newborn |
| I do not know/I am not sure |
| This question requires an answer. |
| Has your child had genetic testing to help determine their PH diagnosis? |
| Yes and their relatives have also had genetic testing |
| Yes but their relatives have not had genetic testing |
| No, they have not had genetic testing |
| This question requires an answer. |
| Why has your child not had genetic testing? |
| It has not been offered to them |
| I cannot/do not want to pay as it is not reimbursed |
| I/my child would prefer not to know about their genetics |
| Please enter a comment. |
| Other (please expand) |
| This question requires an answer. |
| Do you know the result of this genetic testing? |
| Yes, we have been informed of the results |
| No, we are still waiting on the results. |
| This question requires an answer. |
| Please specify how long you and your child have been waiting for the results of the genetic testing. |
| Less than one month |
| 1-6 months |
| 6-12 months |
| Longer than 12 months |
| This question requires an answer. |
| <strong>Pulmonary endarterectomy surgery (PEA) is an operation to remove old blood clots from the pulmonary arteries in the lungs.</strong> |
| Has your child been offered pulmonary endarterectomy surgery (PEA)? |
| Yes, they have been offered PEA surgery |
| Yes, but they do not want PEA surgery |
| No, they have not been offered PEA surgery |
| This question requires an answer. |
| Has your child had PEA surgery? |
| Yes |
| No |
| This question requires an answer. |
| How long did your child have to wait between diagnosis of CTEPH and having the surgery done? |
| Less than 1 month |
| 1-6 months |
| 6-12 months |
| Longer than 12 months |
| This question requires an answer. |
| On a scale from 1-5 (with 1 being significantly worse and 5 being fully recovered) how does your child feel <em>longer term</em> since the PEA surgery? |
| Please enter a whole number between {0} and {1}. |
| Significantly worse |
| Fully recovered |
| <strong>Balloon pulmonary angioplasty (BPA) is a procedure that involves a fine wire being inserted into blood vessels in the lungs, guiding a tiny balloon into position. The balloon is inflated, to around the size of a pea, for a few seconds to push the blockage aside and </strong><strong>restore blood flow to the lung tissue. The balloon is then deflated and removed. This is usually done over multiple sessions.</strong> |
| Has your child been offered balloon pulmonary angioplasty (BPA)? |
| Yes, they have been offered BPA |
| Yes, but they do not want to have BPA |
| No, they have not been offered BPA |
| This question requires an answer. |
| How many sessions of balloon pulmonary angioplasty (BPA) has your child had in total? |
| 1-5 |
| 6-10 |
| More than 10 |
| This question requires an answer. |
| How long did your child have to wait between diagnosis of CTEPH and having the first session of balloon pulmonary angioplasty (BPA)? |
| Less than 1 month |
| 1 – 6 months |
| 6 -12 months |
| 1 – 2 years |
| Over 2 years |
| This question requires an answer. |
| On a scale of 1-5 (with 1 being significantly worse and 5 being fully recovered), how does your child feel since finishing their BPA sessions (if applicable)? |
| Please enter a whole number between {0} and {1}. |
| 1 |
| 5 |
| Approximately, how long did it take to get your child’s diagnosis from when their symptoms first started? |
| Less than 1 month |
| 1 – 6 months |
| 6 – 12 months |
| 1 – 2 years |
| 2 – 5 years |
| Over 5 years |
| This question requires an answer. |
| <strong>There are many types of medications used to treat pulmonary hypertension. Here we would like to understand more about your child’s medication and their experience of taking it. They may take multiple medications, in this case choose all that are applicable.</strong> |
| What are the name(s) of the PH medication(s) your child is currently taking? It may be useful to look at their prescription now to help answer this question. Sometimes there are multiple brand names for the same drug, some of which are stated below. Please select all that apply. |
| Ambrisentan (Letairis) |
| Amlodipine (Istin) |
| Bosentan (Tracleer) |
| Diltiazem (Adizem, Angitil, Dilcardia, Retalzem, Slozem, Tildiem, Uard, Viazem, Zemtard) |
| Epoprostenol (Flolan) |
| Epoprostenol (Veletri) |
| Iloprost (Ventavis) |
| Macitentan (Opsumit) |
| Nifedipine (Adalat, Adanif, Adipine, Coracten, Dexipress, Fortipine, Neozipine, Nidef, Nifedipress, Tensipine, Valni) |
| Nircadipine (Cardene) |
| Riociguat (Adempas) |
| Sildenafil (Revatio) |
| Tadalafil (Cialis) |
| Treprostinil (Remodulin) |
| Treprostinil (Tyvaso) |
| I am not sure/I/my child would prefer not to answer |
| Please enter a comment. |
| Other including drugs as part of a clinical trial (please specify) |
| This question requires an answer. |
| Is your child on blood thinning medication (anti-coagulants)? |
| Yes |
| No |
| This question requires an answer. |
| What kind of blood thinning medication (anti-coagulant) is your child taking? It may be useful to look at their prescription to help answer this question. Choose all that apply. |
| Warfarin or Acenocoumarol tablets – these require regular blood tests to check the dose |
| Dabigatran, rivaroxaban, apixaban, edoxaban or betrixaban tablets |
| Injections under the skin (e.g. heparin drugs) – there are lots of types |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Has your child experienced any side effects <em>that you think are</em> due to their PH medication in the last 6 months? |
| Yes |
| No |
| This question requires an answer. |
| What side effects of their medication have they experienced in the last 6 months? Choose all that are applicable. |
| Stomach upset or nausea |
| Heartburn |
| Headache |
| Nosebleeds |
| Skin flushing |
| Muscle aches |
| Trouble sleeping |
| Shortness of breath |
| Nasal congestion |
| I do not know/I am not sure |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| In the last 6 months, have you/your child had a discussion with their healthcare provider about possibly changing their medication due to side effects? |
| Yes |
| No |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Does your child ever use oxygen? |
| Yes |
| No |
| This question requires an answer. |
| Does your child use a portable (ie. ready for travelling) oxygen concentrator? |
| Yes |
| No |
| This question requires an answer. |
| Has your child had a heart and/or lung transplant? |
| Yes – heart transplant |
| Yes – lung transplant |
| Yes – heart and lung transplant |
| No |
| This question requires an answer. |
| Is your child currently awaiting a heart and/or lung transplant? |
| Yes – heart transplant |
| Yes – lung transplant |
| Yes – heart and lung transplant |
| No, they are not awaiting a transplant |
| This question requires an answer. |
| Does your child have an official disabled status due to their PH? Examples might include you having a disabled badge for car parking or receiving disability benefits. |
| Yes |
| No |
| This question requires an answer. |
| What are the benefits of having disabled status in your country? Please select all that apply. |
| Special care |
| Parking |
| Financial benefits (eg. state subsidy, tax allowance) |
| Reduced working hours |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| <strong>The next set of questions relate to research to find new drugs for PH which is vital to improve the outcomes for patients over time.</strong> |
| Has your child ever taken part in a clinical research trial (which involved research into a drug or device for PH)? |
| Yes |
| No |
| This question requires an answer. |
| What was your child’s overall experience of the trial like? |
| Very bad |
| Bad |
| No opinion |
| Good |
| Very good |
| This question requires an answer. |
| Would your child participate again in a clinical trial that involved taking a drug for pulmonary hypertension? |
| Definitely not |
| Probably not |
| Unsure |
| Probably yes |
| Definitely yes |
| This question requires an answer. |
| Would your child ever consider taking part in a clinical trial? |
| Yes |
| Please enter a comment. |
| No, please specify your reasons for this decision |
| Would you/your child be willing to allow researchers to access and use your child’s anonymous healthcare information that has already been collected as part of their routine care (e.g. GP records)? |
| Yes |
| No |
| This question requires an answer. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 1 of 3 sections</strong></span> |
| Section 2: Monitoring Your Pulmonary Hypertension |
| <strong>Pulmonary hypertension is a chronic (long term) condition which needs monitoring over time. Patients are now increasingly monitoring their own progress. Different people do this in different ways. In this section we would like to understand how your child monitors their PH.</strong> |
| Do you/your child monitor their PH (i.e self-monitor) and/or record their health status? |
| Yes |
| No |
| Used to but not anymore |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How do you/your child monitor their pulmonary hypertension? |
| Keep a record on paper/calendar |
| Use a sport/health application on a smartphone/tablet/smartwatch |
| Use a specialised PH application on a smartphone/tablet/smartwatch |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Do you/your child share the information collected with the clinical team looking after their PH? |
| Yes regularly |
| Yes sometimes |
| No but we would be happy to |
| No and we would prefer not to |
| This question requires an answer. |
| Does your child own a smartphone (i.e. a phone with internet access)? |
| Yes, they have an iPhone (Apple) |
| Yes, they have an Android phone (including Samsung, Sony, Huawei, LG, OnePlus, Google) |
| They have a mobile phone but it isn’t a smartphone |
| They do not own a mobile phone |
| This question requires an answer. |
| Does your child own a wearable activity tracker (e.g. a smartwatch)? |
| Yes, they have a smartwatch |
| No, they use my phone/another method to track my activity |
| No, they do not track my activity |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| In general, how confident does your child feel using apps on a mobile phone or tablet device to monitor their condition? (An ‘app’ is a software application on a device that accesses the internet). |
| Not confident |
| Somewhat confident |
| Quite confident |
| Very confident |
| N/A |
| This question requires an answer. |
| 6-Minute Walk Test is where a patient is asked to walk as far as they can in 6 minutes. If you/your child was trained to measure their distance with an app on a smartphone or digital device, would your child feel able to complete a 6-Minute Walk Test outside of the hospital (e.g. walking outside your house)? |
| Yes |
| No |
| I’m not sure |
| This question requires an answer. |
| How active do you consider your child to be? |
| Very inactive |
| Quite inactive |
| Neither active or inactive |
| Quite active |
| Very active |
| This question requires an answer. |
| <strong>Patient Reported Outcome (PRO) questionnaires are forms filled out by patients to assess how they feel about living with PH and their quality of life. Doctors often ask PH patients to fill out a PRO questionnaire to keep track of their patient’s health status. Alternatively, people living with PH might fill out a PRO questionnaire by themselves to self-monitor their health status. Here you will find questions about PRO questionnaires and how your child uses them.</strong> |
| Have you/your child ever filled out a Patient Reported Outcome (PRO) questionnaire to assess your child’s condition? |
| Yes |
| No |
| This question requires an answer. |
| Which of the following PRO questionnaire(s) have you/your child filled out? Please select all that apply. There are pictures of the different types for your reference. |
| Other/I am not sure (see below) |
| CAMPHOR |
| EMPHASIS-10 |
| PAH-SYMPACT |
| LPHQ |
| This question requires an answer. |
| If you chose ‘other’ in the previous question, please tell us which other PRO questionnaire(s) you/your child have filled out. If you are not sure, please leave blank. |
| How often do you/your child fill out patient reported outcome (PRO) questionnaires? Please choose all that apply. |
| Only once when they was diagnosed |
| Every time they have an appointment |
| At regular intervals (e.g. once a year) |
| When they participated in a clinical trial |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Who gave you/your child the PRO questionnaire(s) to fill out? Please choose all that apply. |
| My child’s doctor gave it to me/my child |
| My child’s nurse gave it to me/my child |
| A researcher gave it to me/my child |
| A patient organisation sent it to me/my child |
| I/my child found it on the Internet |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How did you/your child complete the PRO questionnaire(s)? Please choose all that apply. |
| Via a website online |
| On paper |
| Via an app |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| On average, how long does it take to complete a PRO questionnaire? |
| Less than 5 minutes |
| 5 to 10 minutes |
| 10 to 20 minutes |
| More than 20 minutes |
| This question requires an answer. |
| Have you/your child received any feedback from your child’s medical team or did you/your child talk about the patient reported outcome PRO questionnaire(s) you filled in? |
| The questionnaire was collected by my child’s medical team but we have not received any further information |
| We got feedback from my child’s medical team about it |
| We collected the data solely to self-monitor my condition |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Has your child’s treatment ever been altered based on their answers in a PRO<br>questionnaire? |
| Yes |
| No |
| I’m not sure |
| This question requires an answer. |
| Do you think the questions cover the ways in which PH affects your child’s life? |
| Yes (they cover all ways in which PH affects my child’s life) |
| Mostly (they cover some of the ways in which PH affects my child’s life) |
| No (they do not cover many of the ways PH affects my child’s life) |
| Not at all (they cover none of the ways PH affects my child’s life) |
| N/A (PH does not affect my child’s life) |
| This question requires an answer. |
| Are there any ways that PH affects your child’s life that are not included in the PRO questionnaire(s) that you/your child have completed? (please give details) |
| <strong>As well as self-monitoring pulmonary hypertension, many people attend appointments at specialised PH clinics. This section has questions about the specialised centre/hospital appointments your child may attend regarding their pulmonary hypertension.</strong> |
| Is your child currently under the care of a specialist centre/hospital? |
| Yes |
| No |
| This question requires an answer. |
| How long has your child been under the care of a specialist centre/hospital? |
| Less than 1 month |
| 1 – 6 months |
| 6 -12 months |
| 1 – 2 years |
| 2 – 5 years |
| More than 5 years |
| This question requires an answer. |
| Is the cost of the healthcare provided by this specialist centre reimbursed or paid for by your healthcare provider and/or the national insurance fund (e.g. NHS in the UK)? |
| Yes, it is reimbursed/paid for in full |
| Yes, it is partially reimbursed/paid for |
| No, it is not reimbursed/paid for |
| I am not sure |
| This question requires an answer. |
| Does your child’s centre provide rehabilitation services or cooperate with centres providing such services? |
| Yes |
| No |
| I am not sure |
| This question requires an answer. |
| Is this rehabilitation reimbursed/paid for by your healthcare provider and/or the national insurance fund? |
| Yes, it is reimbursed/paid for in full |
| Yes, it is partially reimbursed/paid for |
| No, it is not reimbursed/paid for |
| I am not sure |
| This question requires an answer. |
| Approximately how frequently does your child see their doctor at the specialist centre? |
| More than once a month |
| Once a month |
| Once every 2-3 months |
| Once every 3-6 months |
| Once every 6-12 months |
| Less than once every 12 months |
| This question requires an answer. |
| How long does your child’s average visit take in the specialist PH hospital (not involving travel to and from the centre)? |
| Less than 30 minutes |
| 30-60 minutes |
| 1-2 hours |
| 2-4 hours |
| 4-6 hours |
| More than 6 hours |
| This question requires an answer. |
| Does your child normally travel to a PH centre with a family member/friend/caregiver such as yourself? |
| Yes, to help them with travelling arrangements |
| Yes, for emotional support/helping with information given to them during the visit in PH centre |
| Yes, for help travelling and for emotional support/helping with the information given |
| Yes, but for other reasons |
| No, they travel alone |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| How does your child normally travel to their appointments at their specialist PH hospital?<span style=”line-height: 0px;”></span> |
| By car |
| By public transportation (eg. train, bus or metro/underground) |
| By taxi /shared ride service (Uber, Lyft, etc.) |
| By hospital transport |
| By air |
| Please enter a comment. |
| Other (e.g. walk, please specify) |
| This question requires an answer. |
| Approximately how far away does your child live from their specialist PH<br>centre/hospital? Please specify the distance and whether you are using Kilometres or Miles. |
| Distance |
| KM/Miles |
| This question requires an answer. |
| How long does it take you to travel with your child to their specialist PH centre/hospital (each way)? |
| Less than 30 minutes |
| 30 – 60 minutes |
| 1 – 2 hours |
| 2 – 3 hours |
| More than 3 hours |
| This question requires an answer. |
| Approximately, how much does the return journey to the centre/hospital usually cost? Please include petrol/gas, parking, public transport costs, and any other costs incurred for both yourself and anyone who may accompany you and your child. Please specify the cost and the currency you are using. If you do not know the cost, please skip this question. |
| Cost |
| Currency |
| How difficult or stressful does your child find visiting your PH centre/hospital for appointments? |
| Not at all |
| A little |
| Somewhat |
| Very |
| This question requires an answer. |
| Does your child attend most of their appointments in person or remotely (online/by telephone)? |
| All of my child’s appointments are in person |
| Most of my child’s appointments are in person |
| My child’s appointments are about half in person and half online or by telephone |
| Most of my child’s appointments are online or by telephone |
| All of my child’s appointments are online or by telephone |
| This question requires an answer. |
| If some things that normally take place during a visit could be done from home, such as answering questions about symptoms, would you/your child be happy for this to happen via telephone / video call / other online format instead? |
| Yes we would be happy to have telephone/video calls |
| Yes but we would still like face-to-face visits for other things |
| No we would not be happy to have telephone/video calls |
| This question requires an answer. |
| How good is the communication between the experts at the specialist centre and your GP/local consultant/local doctor? For example, can your child have blood taken at your GP/local consultant/local doctor for the specialist centre to analyse. |
| There is good communication between local services and the specialist centre |
| There is not good communication between local services and the specialist centre |
| I am not sure |
| This question requires an answer. |
| Does your child feel they fully understand the information their healthcare provider gives them? |
| Yes, they usually understand the information from their healthcare provider |
| They usually understand some of the information from their healthcare provider |
| No, they often do not understand the information from their healthcare provider |
| This question requires an answer. |
| Do you think the results from your child’s medical checkups generally reflect how they feel their PH affects them? (For example, does your child feel better or worse than your test results show?) |
| They never reflect how my child feels |
| They often do not reflect how my child feels |
| They sometimes reflect how my child feels |
| They often reflect how my child feels |
| They always reflect how my child feels |
| I am not sure |
| This question requires an answer. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 2 of 3 sections</strong></span> |
| Section 3: Impact of Pulmonary Hypertension (PH) on Quality of Life |
| <strong>Pulmonary hypertension (PH) often impacts a patient’s quality of life. This impact differs from person to person. In this section, we would like to find out how your child’s PH influences everyday activities, emotions and their relationships. Some of the questions are optional so please leave these questions blank if they do not apply to you/your child.</strong> |
| On a scale of 1-5 (with 1 being significantly worse and 5 being fully recovered), how much do you think your child’s PH has changed since their diagnosis? |
| Please enter a whole number between {0} and {1}. |
| 1 |
| 5 |
| This question requires an answer. |
| How often does pulmonary hypertension (PH) affect the following activities/aspects of your child’s life? |
| Getting dressed/taking a shower |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Walking a short distance/climbing a flight of stairs |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| Not applicable (my child is not mobile) |
| This question requires an answer. |
| How they spend their free time (eg. socialising, hobbies etc.) |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| Not applicable (my child is not mobile) |
| This question requires an answer. |
| Does PH limit your child’s ability to play with other children (eg. friends, siblings)? |
| No, not at all |
| Yes, only those activities are possible which require physical effort |
| Yes, my child’s condition does limits their ability |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Does your child attend kindergarten/nursery or school? |
| Yes |
| Yes, but a kindergarten/nursery/school which offers special care |
| No |
| This question requires an answer. |
| Does your child’s kindergarten/nursery/school know about your child’s PH? Are they supportive? |
| Yes, my child’s kindergarten/nursery/school knows about my child’s PH and they are supportive |
| Yes, my child’s kindergarten/nursery/school knows about my child’s PH but they are not supportive |
| No, my child’s kindergarten/nursery/school does not know about my child’s PH |
| This question requires an answer. |
| Is your child in need of/using any of the following. Please select all that apply.<span id=”mce_1_start” style=”line-height: 0px;”></span> |
| Wearable device (eg.smartwatch with built-in emergency phone) |
| Medical device (eg. for continuous monitoring) |
| E-scooter or other mobility aid (eg. socialise/keep up with their friends?) |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| If you/your child feels that their pulmonary hypertension (PH) has had a negative impact on their quality of life, who would you/your child consider discussing this with? Choose all that are applicable. |
| Pulmonary Hypertension (PH) Specialist |
| Other Specialists |
| Family doctor/GP |
| Counsellor/psychologist |
| Nurse |
| Patient Organisation |
| Significant Other/Life Partner |
| Family/friends |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| <strong>Living with pulmonary hypertension can be hard at times. This can affect feelings and emotions as well as relationships with those around you. In this part, we would like to understand how your child’s PH has affected their emotions and relationships recently.</strong> |
| In the last month, have you experienced in your child any of the following, particularly as a result of her/his pulmonary hypertension? |
| Low self-esteem/confidence |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling isolated/no desire to socialise |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling misunderstood |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Challenges in maintaining a healthy diet |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Fidgety/restless/stressed |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Use this space for additional comments: |
| <strong>Looking after a child with PH may take extra time as they have many needs and we are interested to understand more about this.</strong> |
| How many extra hours per day do you devote to parenting obligations due your child’s PH? |
| Less than 1 hour |
| 1-2 hours |
| 3-4 hours |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Did you have to change your job as a result of your child being diagnosed with PH? |
| Yes, I needed to stop working |
| Yes, I became a part time worker |
| No, I can continue my job |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Does your employer know about your child’s PH? Are they supportive? |
| Yes, my employer knows about my child’s PH and they are supportive |
| Yes, my employer knows about my child’s PH but they are not supportive |
| No, my employer does not know about my child’s PH |
| This question requires an answer. |
| How often does your child’s pulmonary hypertension (PH) affect the following activities/aspects of your life? |
| Dealing with domestic work/household chores/cooking/shopping |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| How you spend your leisure time (eg. socialising, hobby, travelling, playing with your children). |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| In the last month, have you as a parent experienced any of the following, as a result of your child’s diagnosis with pulmonary hypertension? |
| Low self-esteem/confidence |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feeling angry/frustrated |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Feelings of guilt/embarrassment/hopelessness |
| Never |
| Rarely |
| Sometimes |
| Often |
| Very Often |
| This question requires an answer. |
| Use this space for additional comments: |
| <strong>Patient associations are a very useful way to get more information and help regarding your pulmonary hypertension. If you are not a member of one or haven’t heard of one before please feel free to ask your child’s Doctor/GP/Nurse at their next appointment.</strong> |
| Are you/your child currently part of a national patient<em> pulmonary hypertension</em> association (e.g. PHA Canada, PHA South Africa, PHA UK)? |
| Yes |
| No |
| This question requires an answer. |
| What do you find most useful about being a part of a patient association? Choose all that are applicable. |
| Information/education for patients and their friends/family |
| Patient meetings/support groups (peer-to-peer support) |
| 24/7 phone helpline |
| Help with social support applications |
| Help with travel arrangements |
| Help with access to treatment |
| Access to helpful devices, e.g. oxygen concentrator, medical watch, special scooter |
| Help with communication between you and your healthcare provider |
| Access to an informative website |
| Access to a regular magazine |
| Awareness activities |
| Financial support in emergencies |
| Please enter a comment. |
| Other (please specify) |
| This question requires an answer. |
| Use this space for additional comments. Please include anything you would like from a patient organisation that might not be currently offered. |
| <span style=”font-size: 36pt;”><strong>Congratulations, you have now completed 3 of 3 sections</strong></span> |
| Final Comments |
| <div>\n<div><strong>Thank you very much for completing this questionnaire. The results gathered are extremely important to help improve the quality of life of patients living with PH. The results of this questionnaire will be published in a scientific journal (in print and online) and presented at international conferences. A lay summary will be made available via Pulmonary Hypertension Associations to patients.</strong></div>\n<div><strong>Understanding your experience is key to developing international guidelines and influencing the direction of future research, to improve care and outcomes for patients globally.</strong></div>\n</div> |
| If you/your child would like to be further involved in research (e.g. doing more questionnaires like this one) please leave your details below. If not, please leave blank and click next. |
| Name |
| Company |
| Address |
| Address 2 |
| City/Town |
| State/Province |
| ZIP/Postal Code |
| Country |
| Email Address |
| Phone Number |
| Another purpose of this questionnaire is to raise awareness of pulmonary hypertension. For this reason, we would like to ask if you would be willing to be contacted to share your child’s story publicly. If so, please leave your details below. If not, please leave blank and click next. |
| Name |
| Company |
| Address |
| Address 2 |
| City/Town |
| State/Province |
| ZIP/Postal Code |
| Country |
| Email Address |
| Phone Number |
| <strong>Please remember that your pulmonary hypertension (PH) Patient Association is always there to help and support you. Pulmonary Hypertension (PH) is not a well-known disease. Patients, and the people close to them, encounter many challenges that the general population are not aware of. Therefore, be assertive in getting answers to questions and issues that concern you. Be active in seeking help and solutions.</strong> |
| <span style=”font-size: 36pt;”><strong>You have now completed this questionnaire.</strong></span> |
| <strong>If you would like to change any of your answers, you may do so by pressing the “Previous” button prior to finalising the questionnaire. Please finalise the questionnaire by pressing the “Next” then “Done” button. Once you press “Done”, you will not be able to go back to review or change your answers.</strong> |
| <span style=”font-size: 36pt;”><strong>Thank you for completing this questionnaire.</strong></span> |
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| Thank you for completing our survey! |
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