Views of patients about sickle cell disease management in primary care: a questionnaire-based pilot study

OBJECTIVES: To determine how patients with sickle cell disease (SCD) perceive the quality of care that they receive from their primary healthcare providers. DESIGN: A questionnaire-based pilot study was used to elicit the views of patients about the quality of care they have been receiving from their primary healthcare providers and what they thought was the role of primary care in SCD management. SETTING: Sickle Cell Society and Sickle Cell and Thalassaemia Centre, in the London Borough of Brent. PARTICIPANTS: One hundred questionnaires were distributed to potential participants with SCD between November 2010 and July 2011 of which 40 participants responded. MAIN OUTCOME MEASURES: Analysis of 40 patient questionnaires collected over a nine-month period. RESULTS: Most patients are generally not satisfied with the quality of care that they are receiving from their primary healthcare providers for SCD. Most do not make use of general practitioner (GP) services for management of their SCD. Collecting prescriptions was the reason most cited for visiting the GP. CONCLUSION: GPs could help improve the day-to-day management of patients with SCD. This could be facilitated by local quality improvement schemes in areas with high disease prevalence. The results of the survey have been used to help develop a GP education intervention and a local enhanced service to support primary healthcare clinicians with SCD's ongoing management.