Patient reported experiences of community rehabilitation and/or support services for people with long term neurological conditions: a narrative review of quantitative studies.

Abstract

1. To identify validated quantitative Patient Reported Experience Measures (PREM's) being used in Community Rehabilitation and/or Support services for people with long term neurological conditions (PwLTNC). 2. To explore how data from quantitative PREM's adds to research on patient experiences of Community Rehabilitation and Support for PwLTNC. Eight data bases were searched for peer reviewed studies (2005-2021) which met inclusion criteria. Data extraction and quality assessment for sixteen studies was performed by two reviewers. Narrative synthesis was conducted. Eleven validated PREM's were identified which captured data for 15,831 PwLTNC. PREM scores indicated positive and negative experiences for people with Multiple Sclerosis (<i>n</i> = 13,123), Parkinson's Disease (<i>n</i> = 2215) and Acquired Brain Injury (<i>n</i> = 493). Negative experiences related to Picker Institute Principles: 1 (accessibility); 3 (coordination/continuity); 4 (involvement/support for family and carers); 5 (information provision), 6 (Involvement in decision making) and 7 (empathy and emotional support). Quantitative PREM's provide evidence of process quality and person-centred care within community rehabilitation and support services across large data sets of heterogeneous neurological conditions and geographical locations. Quality improvement initiatives for people with MS, PD and ABI should target processes relating to Picker Institute Principles 1,3,4,5,6, and 7.