Abstract
Self-report questionnaires can enable health and social care organisations to understand better a person’s views about their health and well-being, allowing them to provide effective, safe, individualised integrated care.
Outcomes are the results from care and/or treatments people have received whilst in clinical or other care settings. Some outcomes, such as symptoms, quality of life and aspects of physical, mental, and social functioning can only be captured directly from the person themselves. These are called patient-reported outcomes (PROs) in healthcare settings, and this information is usually collected using electronic questionnaires that allow us to assess and measure these issues of individual importance.
PROs can deliver person-centred care through individualised clinical assessments to support disease/treatment monitoring leading to improved patient–clinician communication which aids shared decision-making. At an organisational level, PROs are used to monitor provider performance, inform policy, and guide quality improvement. PROs in social care could be used similarly, to promote choice and autonomy, to ensure care meets a person’s goals for their health and wellbeing. At a service level, these self-report questionnaires could help identify unmet need and guarantee that measures of quality emphasise person-centred outcomes. PROs offer an opportunity to support effective integrated care in settings where individuals, particularly those with multiple long-term conditions, might receive both health and social care services.
The National Institute for Health and Care Research Applied Research Collaborative West Midlands (NIHR ARC WM) leads a programme of research exploring the use and implementation of PROs in integrated care. A Priority Setting Group was established comprising people with lived experience of health and social care(n=3), experts in health, social care and PROs methodology (n=4) and representatives from a charity to support independent living (n=2), who identified the need to undertake a scoping review to explore the evidence on the use of PROs in adult social care.
The scoping review, which included searches of 6 databases (years 2010-2023), identified 159 articles reporting on the international use of 216 PRO measures in social or integrated care. PROs were primarily used as research tools, but 5% studies reported PROs as part of an intervention; 23.9% papers focused on PROs use with participants in long-term residential care, with less published evidence of PROs use for those receiving supported living services (5.7%) and social day care services (3.1%). Only 3 articles (1.9%) referred to PROs in the context of the provision of integrated health and social services. The review highlighted a lack of coherence in purpose of use and poor reporting of implementation factors that could optimise PROs use to achieve potential identified benefits in these populations.
Findings informed a mixed methods study (qualitative interviews and structured survey), designed in consultation with the NIHR ARC WM Public Advisory Group (n=18), to explore current and potential use of PROs in integrated care settings, involving persons with lived experience, carers and professionals across health, social care, voluntary and charitable organisations. Results will inform guidance on key considerations to optimise PROs use in integrated care.