Aljuburi G, Okoye O, Majeed A, Knight Y, Green Sa, Banarsee R, Nkohkwo A, Ojeer P, Ndive C, Oni L, Phekoo Kj
Department of Primary Care and Public Health, Imperial College London , London , UK.
JRSM Short Rep. 2012 Nov;3(11):78. doi: 10.1258/shorts.2012.011173. Epub 2012 Nov 30.
To determine how patients with sickle cell disease (SCD) perceive the quality of care that they receive from their primary healthcare providers.
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.
Sickle Cell Society and Sickle Cell and Thalassaemia Centre, in the London Borough of Brent.
One hundred questionnaires were distributed to potential participants with SCD between November 2010 and July 2011 of which 40 participants responded.
Analysis of 40 patient questionnaires collected over a nine-month period.
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.
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.
确定镰状细胞病（SCD）患者如何看待他们从初级医疗保健提供者那里获得的护理质量。
采用基于问卷的试点研究，以了解患者对他们从初级医疗保健提供者那里获得的护理质量的看法，以及他们认为初级保健在SCD管理中的作用。
伦敦布伦特自治市的镰状细胞病协会以及镰状细胞与地中海贫血中心。
2010年11月至2011年7月期间，向100名潜在的SCD患者发放了问卷，其中40名患者做出了回应。
对在九个月期间收集的40份患者问卷进行分析。
大多数患者总体上对他们从初级医疗保健提供者那里获得的SCD护理质量不满意。大多数患者在管理其SCD时未利用全科医生（GP）服务。取药是最常被提及的看全科医生的原因。
全科医生可以帮助改善SCD患者的日常管理。疾病高发地区的地方质量改进计划可以促进这一点。调查结果已被用于帮助开展一项全科医生教育干预措施和一项地方强化服务，以支持初级医疗保健临床医生对SCD进行持续管理。
