Patient's perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesis.

Abstract

Background: In the UK, epilepsy care involves both specialists (eg, neurologists) and generalists (eg, general practitioners). Policymakers typically consider that epilepsy care should be integrated and involve both specialists and generalists. However, few understand exactly how patients view and compare specialist and generalist care.

Aim: This systematic review aimed to explore patient perspectives of specialist care and generalist care for epilepsy in a qualitative evidence synthesis.

Design & setting: Systematic Review, qualitative evidence synthesis using an identified framework.

Method: Systematic searches in 5 databases retrieved 17 eligible studies. Data was extracted and synthesised using framework analysis informed by the 'United Model of Generalism'.

Results: Three themes were developed: 'Epilepsy care can be burdensome' (eg, through care fragmentation); 'Patient's experience is that care is not always accessible' (eg, lack of a continuum between standardised and interpretive care); 'How care could change for people with epilepsy' (eg, clinicians currently have insufficient time to deviate from protocol-driven care to address psychosocial needs). People with epilepsy frequently observe that generalists lack expertise in epilepsy management.

Conclusions: This synthesis of patient experiences indicates recommendations should focus on improving communication and integration between specialists and generalists for epilepsy care. Patient experiences indicate specialist care risks being burdensome and generalist knowledge insufficient, requiring enhanced primary care clinician skills and improved awareness of patient psychosocial needs. The findings argue in favour of healthcare policies, materials and tools to continually support patient perspectives in developing epilepsy services.