The content and processes of patient-derived quality of care indicators for people living with multiple long-term conditions (MLTC): A scoping review

Background The growing prevalence of multiple long-term conditions (MLTC) poses a public health challenge. Existing quality of care (QoC) indicators are poorly suited to the needs of MLTC populations with limited clarity on how quality should be measured. This scoping review aimed to map QoC indicators for MLTC in primary care developed with patient and caregiver input, and to characterise the methods and extent of that involvement. Methods Scoping review following the six-stage framework by Arksey and O’Malley refined by Levac et al. Searches were conducted on six databases. Studies were included if adults with two or more chronic conditions were involved. Data were charted on indicator content (name, quality domain, data sources, measurement characteristics) and development processes (methodological approaches and stakeholders involved). Where indicators were not specified, qualitative findings were synthesised to identify QoC domains and mapped to the Donabedian model and Institute of Medicine quality domains. Community partners with lived experience of MLTC were involved. Results Twenty-five studies were included, 78 QoC indicators were identified and a further 33 quality domains were synthesised through thematic analysis. Quality was predominately measured through patient-experience surveys rather than indicators. Studies articulated quality through care processes such as care coordination, shared decision-making and holistic assessments. Outcomes focused on functional capacity, social participation and quality of life. Conclusion Despite robust evidence on what matters to people living with MLTC, few patient-derived QoC indicators have been developed into measurable indicators. Further work is needed to co-produce indicators suitable to existing primary care settings.