The healthcare needs and general practice utilization of people with acquired neurological disability and complex needs: A scoping review

Abstract

Background For people with acquired neurological disabilities and complex needs, general practitioners (GPs) play an important role in health management and early intervention for the prevention of comorbidities and health complications. People with disability are a vulnerable group who need and have the right to, quality general practice services. It is therefore important to understand the health needs and service use of this group. The aim of this review was to identify the healthcare needs and general practice utilization of people with acquired neurological disabilities and complex needs. Methods A scoping review methodological framework was utilized. Six databases (MEDLINE, PsycInfo, CINAHL, Scopus, Embase and the Cochrane Library) were searched. Articles were included if they reported on general practice service utilization of people with acquired neurological disabilities and complex needs aged between 18 and 65. Articles were required to be peer‐reviewed, written in English and published between 2010 and 2021. Results Thirty‐one articles were included in the review. Studies originated from Canada (9), the United States (8), Australia (4), Switzerland (4), the United Kingdom (2), England (1), Norway (1), France (1) and Denmark (1). For many people, GPs were the main healthcare provider. People with disability consult multiple healthcare providers and navigate complex healthcare systems. Commonly presented healthcare needs were bladder, bowel and skin problems, pain and chronic pain, medication needs and mental health concerns. Conclusions People with acquired neurological disabilities and complex needs were vulnerable to receiving suboptimal healthcare. The literature highlighted issues regarding the accessibility of services, the fragmentation of health services and inadequate preventative care. GPs were challenged to offer adequate disability‐related expertise and to meet the mental health needs of people with disability within time constraints. Patient and Public Involvement This manuscript was prepared in collaboration with a GP, who is one of the authors. A person with lived experience of acquired neurological disability was engaged to check the alignment of the findings with their personal experience and provide feedback.

Primary healthcare needs and service utilisation of people with disability: a data linkage protocol

“… 10 Currently, there is a lack of evidence about how people with disability use general practice and the health needs people with disability present with at general practice. 11 Understanding the service use and health needs of this cohort can inform policy, planning and funding and inform interventions to improve the quality of primary healthcare.…”

“…15 A greater understanding of the healthcare needs and primary care service use is required to improve the primary care experience and outcomes for people with disability. 11 …”

“… 18 19 The breadth and severity of these impairments coincide with primary healthcare needs distinct from the rest of the population and increased health challenges that often fall to GPs for initial treatment and management. 11 Previous research has found that although people with acquired neurological disability are high users of GP services, 20–22 they are less likely to receive comprehensive care 22 23 including low frequency of preventive care practices. 24–27 For example, women with traumatic brain injury have reported not receiving care when needed at general practice, particularly for emotional or mental health problems.…”

“… 27–29 People with acquired neurological disability have also expressed frustration and concerns that their GPs do not understand the impact their disability has on their overall health or its health complications. 11 Indeed, lack of disability-related expertise is a known barrier to providing high-quality primary care. 30 The available evidence regarding the healthcare needs presented at general practice by people with acquired neurological disability lacks sufficient granularity to inform effective treatment strategies that can improve quality of care.…”

“…Considering the known vulnerability to incomplete primary care and lack of evidence pertaining to healthcare needs presented at general practice, initial cohorts will be people with acquired neurological disorders as a result of ABI, cerebrovascular accidents (stroke), CP, MS or SCI. 11 This research will provide an important first step to inform targeted areas of intervention that can improve the quality of healthcare provided in general practice for people with disability.…”