A medical fieldwork guide to PAH
Around 5,000 people in the UK have PAH and because of the nature of the condition, it becomes more common in people over the age of 40.
Pulmonary arterial hypertension (PAH) is a progressive disorder characterised by abnormally high blood pressure in the pulmonary artery. Around 5,000 people in the UK have PAH and because of the nature of the condition it becomes more common in people over the age of 40.
Due to early symptoms such as dizziness, fatigue and breathlessness that are common to many other conditions, PAH, is hard to diagnose - in fact, statistics show that around 3,000 people remain undiagnosed. As a result, time from symptom onset to diagnosis is usually more than two years, and the disease is often not recognised until it is relatively advanced.
Who’s who in PAH?
There are nine specialist centres across the UK where multi disciplinary teams (MDTs) diagnose and treat PAH:
- Freeman Hospital in Newcastle
- Golden Jubilee National Hospital in Glasgow
- Great Ormond Street Hospital in London
- Hammersmith Hospital in London
- Papworth Hospital NHS Trust in Cambridge
- Royal Brompton Hospital in London
- Royal Free Hospital in London
- Royal Hallamshire Hospital in Sheffield
However, due to the complex nature of the disorder, HCPs that specialise in PAH can be hard to recruit for medical fieldwork studies. The specialist team often comprises but is not limited to:
Pulmonologists specialise in the diagnosis and treatment of lung conditions and diseases, including pulmonary hypertension. These specialists will examine PAH patients regularly, develop an individual treatment and care plan to optimise the patient’s health and wellbeing as well as overseeing the care provided by other team members.
You can recruit Pulmonologists who specialise in PAH for medical fieldwork studies but not without caution. We would recommend qualitative samples only, due to the small universe, and we would recommend a sample no larger than ten.
From past experience we have learnt that if recruiting to a central location interview it would be advisable to offer a higher incentive than what you might normally offer to a Pulmonologist because of the specialist nature of these respondent types. We would also recommend large cities only for central location days including London and Manchester. The sample could then be topped up using telephone interviews.
Heart failure is a possible consequence of pulmonary arterial hypertension, and therefore cardiologists will be an essential part of the care team because they can interpret test results and monitor heart function. Some cardiologists specialise in treating pulmonary hypertension, but considering they are not the main treaters for PAH the number is very small.
Therefore, if recruiting for medical fieldwork studies we would recommend very small sample sizes – approximately 1-2 respondents. Again, we would recommend recruiting for qualitative methodologies only.
Specialist nurses will provide follow-up and day-to-day care as well as being patients’ main point of contact if they have questions about symptoms, medications and side effects. One of their most important responsibilities is to help patients manage complex drug regimens and side effects such as nausea, vomiting and aches and pains.
Specialist Nurses are becoming harder to recruit because of their busy job roles and lack of time to allocate to healthcare market research. This is the case even with very common therapy areas such as Diabetes and Dermatology, let alone rarer conditions such as PAH.
Therefore, we would recommend qualitative sample sizes for Nurses (maximum of ten respondents) and offering a higher incentive than normal – perhaps the same level as a standard specialist. Nurses can offer valuable insights for market research as they see patients on a regular basis and often have different relationships with them so it can be beneficial to include them in the sample.
The main role of pharmacists is to ensure that the drugs that patients need to take for pulmonary hypertension are available in the hospital, clinic or pharmacy. They also keep the doctors and nurses apprised of the patients’ drug regimen and any potential dangerous interactions with other drugs that patients might also be taking.
Pharmacists can offer a totally different perspective on the patient journey so it would be a consideration to include them in the sample. Pharmacists can be fairly flexible and recruited for a range of methodologies including face to face and online.
If patients with PAH continue to get worse despite maximum treatment, then single/double lung or cardiopulmonary transplantation may be considered in severe cases. Not everyone is suitable for this treatment, and factors such as age and other medical problems must be considered – however with pulmonary protection and immunosuppression, the long-term prognosis after transplant is good.
Transplant surgeons are also notoriously difficult to recruit, not only as they form a very small universe but they are also extremely busy and are often reluctant to take time out to allocate to market research. Especially taking into account this type of treatment for PAH is very rare, so we would recommend a telephone interview with just one or two respondents.
If you have a medical fieldwork study coming up in the area of PAH and would like understand more about the numbers of Pulmonologists and Specialist Nurses you can access, download the latest NHS Workforce Statistics.