Recommendations to Improve Healthcare Service Provision for Cognitive Impairment in People With Parkinson's Disease: A Mixed Methods Study of the Lived Experience Expert Perspective.

backgroundCognitive impairment, including dementia, is one of the most important nonmotor symptoms of Parkinson's disease (PD). It lowers quality of life and impacts health and economic outcomes for individuals living with PD, their families, and society. Poor recognition and management of cognitive impairment and dementia in PD highlights the need for improved diagnostic and postdiagnostic care pathways. We aimed to inquire about current health services for cognitive evaluation in Australia from people with lived experience of PD. The objective was to derive recommendations for best practice guidelines.

methodsThis two-stage exploratory sequential mixed-method study utilised qualitative and quantitative methods. Stage 1 conducted seven online focus groups exploring the experiences of neuropsychological assessment, diagnosis, and post-diagnostic support for cognitive impairment and dementia in PD. Transcripts were analysed using deductive and inductive thematic analysis and recommendations were derived from this data. Stage 2 involved a national survey of these recommendations to ascertain agreement using a 5-point Likert scale. Recommendations meeting ≥ 70% agreement, median rating ≥ 4, and inter quartile rating (IQR) ≤ 1 were deemed acceptable for inclusion in the guidelines.

resultsFocus groups included people with PD (PwPD) with subjective cognitive decline (PD-SCD, n = 6), mild cognitive impairment (PD-MCI, n = 3), dementia (PDD, n = 3), and carers (n = 3). Findings resulted in the formulation of 25 recommendations from four overarching categories and with several inter-related themes: (1) Pre-assessment (clinicians' reluctance to assess; referrals; informed choice), (2) assessment (delivery of assessment; telehealth), (3) diagnosis (need for transparency; focused discussion; time to discuss), and (4) postdiagnostic care (follow-up assessment; information in plain language; advocating for PwPD). The national survey (n = 69 PwPD, n = 12 carers) found that all recommendations except one demonstrated high agreement (≥ 88%, median rating ≥ 4, IQR ≤ 1). Delivery of a cognitive diagnosis on the same day as cognitive testing was the only area that did not achieve consensus.

conclusionWe identified critical gaps in the diagnosis and management of cognitive symptoms within clinical services, and the subsequent implications for PwPD and their carers. These results provide a lived experience perspective to the development of best practice guidelines for cognitive evaluation in PD. PUBLIC CONTRIBUTION: The project was endorsed by our Consumer and Community Involvement Group (CCIG), a research advisory board consisting of people with lived experience of Parkinson's Disease and dementia, including those caring for PwPD. The CCIG identified initial need for the research project, were involved in refining the focus group topic guide and refining the recommendations for the national survey.