BACKGROUND

"Expert patient" programmes have been introduced in the UK as a new approach to chronic disease management for the 21st century. The average survival age of those with cystic fibrosis (CF) has steadily increased such that the majority of those with the condition now live into adulthood. Currently, specialist CF centres deliver the core of medical care, with primary care providing access to prescribed medicines, referral to other services, and care of non-CF needs, however, it is necessary to provide a more comprehensive service for adult CF patients, involving both specialist centres and primary care. To date, little is known about these expert patients' experiences of primary care.

AIM

To investigate how young adults with CF perceive and experience primary healthcare services.

DESIGN OF STUDY

Qualitative study.

SETTING

One specialist CF centre in southeast England.

METHOD

Interview study of 31 patients with CF, aged 18 years or over.

RESULTS

Adults with CF consult in primary care on two distinct levels: as lay and expert patients. When consulting as experts, patients tend to operate as consumers of health care and perceive a satisfactory doctor-patient relationship to be influenced by three factors: GPs' understanding of how people live with CF, GPs' ability to prescribe certain specialist medications, and sensitive management of the cost of health care for adults with CF. A doctor-patient relationship based on trust and understanding is seen as desirable, but requires that these factors are addressed both by the GP and the patient.

CONCLUSION

Expert patient policy has focused on the role of patients with common chronic conditions in secondary and tertiary care, with little consideration of how adults with rare chronic illness and their GPs manage health problems that can be addressed in primary care. Enabling easy access to holistic care, as well as establishing successful trusting relationships with people with long-term rare conditions, is a necessary foundation for expert patients to take an active role in their care.