According to the latest Cystic Fibrosis Trust figures, there are currently over 10,000 people diagnosed with Cystic Fibrosis in the UK, five babies are born with CF each week, and two people die.
While Cystic Fibrosis is a life-shortening disease – in 1964, 90% of those diagnosed died before the age of 10 – more than half of those diagnosed with CF in the UK will now live past the age of 41. As treatments continue to improve, babies born today with CF are expected to live even longer than that.
There are many ways to manage the condition to ensure the best possible quality and length of life, including physiotherapy, medication, exercise and good nutrition. While children’s care can be delegated to a network of approved providers, the condition becomes increasingly complex over time, so adults require a different approach.
For that reason, the best practice guidelines for the management and treatment of Cystic Fibrosis – recommends that everyone with CF should be registered with a specialist centre, where they can be supported by a specialist team.
There are multiple centres across the UK dedicated to the treatment of Cystic Fibrosis:
- 27 Paediatric centres – can be found here
- 23 Adult centres – can be found here
- There is a degree crossover between centres where they will host specialised transition clinics to help patients move from paediatric treatment to adult care
- This is an extended ‘handover’ period, in which young people are helped to become increasingly more responsible for their own care and treatment and learn how to manage adult life and activities.
- The Cystic Fibrosis Unit at Great Ormond Street Hospital and the Manchester Adult Cystic Fibrosis Centre are flagship centres and are pioneers in CF
The specialist treatment for patients with Cystic Fibrosis includes a multidisciplinary team of doctors, nurses, physiotherapists, nutritionists, pharmacists and other health and social workers to manage the emotional, psychological and practical aspects of living with CF.
All of which we can recruit for medical market research and have recruited for multiple methodologies in the past including central locations, online qual studies and detail follow ups.
To give you a snapshot of our panel numbers for these respondent types, this includes:
- 250 Respiratory Specialists
- 250 Respiratory Nurses
- 200 Dieticians
- 170 Paediatricians
- 40 Physiotherapists
- 500 Retail Pharmacists
- 250 Hospital Pharmacists
- Plus a number of Psychologists and Social Workers
Download our panel book for more stats on the respondent types we can recruit.
A more detailed breakdown of the MDT includes:
A specialist CF doctor will be in charge of a patient’s treatment programme. Typically, they specialise in respiratory medicine, but have extensive knowledge of the longer-term conditions that arise with CF. They work with the patient, their family, their GP and other care team members to develop an individualised medical and care plan that optimises the patient’s health and overall wellbeing. They are often willing to participate in medical market research and can be recruited for both qualitative and quantitative medical market research studies. More recently we recruited a central location day in London which included Respiratory Specialists, Nurses and Pharmacists so have a good source of pre-existing contacts.
CF nurses help to coordinate and carry out the patient’s medical care plan. They guide the patient through their daily treatment plan and any changes that may be needed, providing health information or directing them or their families to resources to help them manage the condition. They also act as the patient’s point of contact regarding any concerns or queries, and facilitate communication with other care team members, alerting them to any psychological, emotional or practical issues that may arise. Specialist nurses are more difficult to recruit for market research based on how little time they have available. However, we have recruited this respondent type for central location and online surveys in the past and are familiar with the best ways to recruit them and methodologies that would appeal to this time-conscious respondent type.
CF respiratory therapists carry out pulmonary function tests (PFTs) to measure the air flow and volume in the patient’s lungs. They teach airway clearance techniques to clear mucus from the lungs, and the correct use of inhaled or nebulised medications designed to control bacteria and reduce inflammation of the airways. They also demonstrate the correct cleaning and maintenance of the medical equipment used to deliver these medications, including nebulizers, air compressors and oxygen systems.
CF physical therapists assess a patient’s fitness and design an appropriate, individually-tailored fitness and exercise programme to improve lung, heart and muscle function, increase mobility, maintain posture and build stamina and strength. They can also help address issues such as urinary incontinence.
Physiotherapists are less often required to participate in market research studies however we do have a number on our panel and will utilise our CATi unit to custom recruit where required.
Nutrition plays a major role in the successful management of CF, and directly influences lung function. Dieticians assess patients’ food intake, growth and overall nutritional status, and then create a treatment plan to help them achieve or maintain a healthy weight.
Advice may include adjustments to eating habits, together with the use of vitamins and dietary supplements, including pancreatic enzymes to aid digestion. If adequate nutrition cannot be achieved by other means, tube feeding may be suggested.
Advice may also be offered to manage CF-related complications such as diabetes and osteoporosis.
Dieticians are often not considered as a useful respondent type for Cystic Fibrosis related medical market research however they can offer valuable information into the nutritional requirement in order to ensure a patients’ lung functions as it should.
CF pharmacists maintain medication histories, dispense medicines and explain how and when to take them for maximum benefit. They advise on the benefits and potential side effects of CF medications, and check that any prescribed medicines will not react harmfully with each other.
We have a large number of both Hospital and Retail pharmacists on our panel and as a result our recruiters have built strong relationships meaning the we have a solid network across the UK to access.
Social workers offer advice and support on the non-medical aspects of living with CF, including benefits, housing, employment, education, prescription charges, access to grants, liaising with disability support services or even arranging holiday insurance. They also support patients during transitions, such as moving onto an adult CF program, going to university or starting a job, referring patients to specialist help and advice when needed.
A CF psychologist has particular expertise in helping people experiencing difficulties in adjusting to the specific challenges of living with CF. They identify and treat emotional issues such as stress, depression or anxiety, advise on coping strategies to balance the requirement for regular ongoing treatment with everyday living, and offer support in dealing with any relationship problems that may arise.
Social workers and Psychologists have important roles within the treatment circuit for CF and help patients with the emotional side affects of CF. Using our custom recruitment approach we can target these respondents types for medical market research offering a different perspective to the norm.
Thanks to improved management and treatment of the condition, people with CF are living longer than ever before. Looking to the future, initial trials are taking place in the development of gene therapy which, while not a cure, could prevent the lung damage responsible for 90% of deaths from CF. Scientists are also investigating the possible use of stem cells to correct genetic faults responsible for some diseases, including CF.
In the meantime, research is continuing to improve the understanding, treatment and management of CF, including the emotional, psychological and social aspects of living with CF for all those affected, including family and friends.
To find even more out about Cystic Fibrosis and who we can access for your market research studies, download our Cystic Fibrosis therapy area guide now.
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