Primary care for patients with rare chronic illnesses

Abstract

Objectives: To investigate the experiences, needs and expectations of primary care reported by patients with rare chronic illness.Methods: Eighteen randomly selected parents of children with one rare chronic condition were interviewed.Results: Information was the most frequently expressed need, but patients were realistic about what the GP could provide, and paradoxically, honesty about a lack of knowledge was admired. Willingness to help with seeking information was positively perceived. Patient reporting of the morbidity due to rare illnesses was often discounted. Parents expressed satisfaction with GPs who supported them in using alternative treatments. The parents correctly understood that the common illnesses were a priority issue, but felt themselves to be marginalised.Conclusions: The needs of patients with rare chronic illnesses in general practice should be further explored.