Views of Patients about Sickle Cell Disease Management in Primary Care: A Questionnaire-Based Pilot Study

Abstract

ObjectivesTo determine how patients with sickle cell disease (SCD) perceive the quality of care that they receive from their primary healthcare providers.DesignA 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.SettingSickle Cell Society and Sickle Cell and Thalassaemia Centre, in the London Borough of Brent.ParticipantsOne hundred questionnaires were distributed to potential participants with SCD between November 2010 and July 2011 of which 40 participants responded.Main outcome measuresAnalysis of 40 patient questionnaires collected over a nine-month period.ResultsMost 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.ConclusionGPs 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.

Perception of primary care doctors and nurses about care provided to sickle cell disease patients

“…Furthermore, these patients may not be aware that PHC activities are aimed at prevention, promotion of health, and continuous care, and may even have sought the service previously and not obtained an effective solution to their problem at that time. 1–3,6 …”

Socio-economic deprivation and risk of emergency readmission and inpatient mortality in people with sickle cell disease in England: observational study

“…Also, the age and comorbidity breakdowns were similar between the least and most deprived groups (data not shown). Targeted intervention programs 29,30 that concentrate on a small number of 'high-risk' patients, such as improving access to appropriate care or adherence to medication protocols 31,32 provide genuine opportunities to prevent a large number of recurrent hospitalizations. Some readmissions may also be prevented through policy initiatives such as the development and implementation of local enhanced services for people with SCD.…”

A retrospective analysis of the cost of hospitalizations for sickle cell disease with crisis in England, 2010/11

“…11 One study assessing the views of patients with SCD showed that patients and carers often bypass their general practitioner for acute problems and attend directly at accident and emergency (A&E) suggesting better primary care interventions could reduce emergency admissions. 20,21 One study looked at 145 general practices in the East Midlands and showed that as the proportion of patients able to consult their primary care physician increased, emergency admission rates decreased. 22 The rate is given by the number of admissions in emergency and elective over the number of population in the PCT for 2011.…”