Minimum data and core outcomes for subacute rehabilitation: A scoping review

Abstract

Objective In clinical practice and research, standardised sets of data and outcomes are routinely collected to facilitate data comparison, benchmarking and quality improvement. Most existing data sets are condition-specific and cannot be applied to all patients in a given clinical setting. This review aimed to determine whether the development of a minimum data set for subacute rehabilitation is feasible by collating and comparing existing rehabilitation minimum data sets and core outcome sets. Data sources Published literature was identified through database searches (Scopus, PubMed, EMBASE, CINAHL and the COMET Initiative) in September 2021. Additional data sets were identified through a grey literature search. Review methods This review was conducted in alignment with the PRISMA-ScR recommendations. Datasets were included if they were published in English, designed for adults, and intended for use in subacute rehabilitation. Data were extracted and taxonomically organised to identify commonalities. Items present in ≥50% of data sets were considered common. Results Twenty minimum data sets and seven core outcome sets were included. There were 29 common minimum data set domains, with 19 relating to Patient Information, seven relating to Outcomes, two relating to Service Delivery and one relating to Provider Demographics. Four common domains were identified within the Core Outcome Set analysis, which all related to Life Impact, specifically Physical Functioning (86%) , Emotional Functioning/Wellbeing (57%) , Social Functioning (86%) and Global Quality of Life (100%). Conclusion Common item domains in conditions requiring subacute rehabilitation have been identified, suggesting that development of a dataset for subacute rehabilitation may be feasible.

Development of a minimum dataset for subacute rehabilitation: a three-round e-Delphi consensus study

“…Analysis of participant responses produced 1072 codes in total, which were condensed into 39 categories and 209 subcategories ( online supplemental file 1 ). These items were cross-checked with a scoping review 26 and focus groups (Wallace et al , in preparation) that form part of this project. An additional seven items were added and presented for rating across rounds 2 and 3.…”

“…A recent scoping review aimed to identify the common data items included in rehabilitation MDS and core outcome sets. 26 The dataset developed in this study shares 18 data items with the list generated in this review, with data commonly collected in other datasets on patient demographics (patient identifier, age, sex, ethnicity/race), premorbid health status (medical/health history, psychosocial history, community supports), admission (length of stay, reason for rehabilitation), service delivery and interventions (intervention provided) and patient outcomes (impairment, change in functional status, activity and participation, health-related quality of life and readmissions). However, the dataset developed in the current study includes 24 items not commonly included in other rehabilitation datasets.…”

“…Previous rehabilitation datasets have primarily focused on specific conditions (eg, stroke, spinal cord injury), with only 13 of 27 datasets involving consumers in their development. 26 Inclusion of consumers and carers in the foundation work which informed the dataset development (Wallace et al , in preparation) and in the project steering committee may explain the inclusion of data items and outcomes specific to caregivers as well as additional outcomes at the life impact level. Additionally, participation by health service managers and clinicians may explain the increased focus on describing service delivery and interventions to allow refinement and improvement of the service provided to patients based on the outcomes achieved.…”

“…Items from round 1 were combined with additional data from a scoping review of rehabilitation datasets 26 and multistakeholder focus groups defining successful rehabilitation (Wallace et al , What is ‘successful rehabilitation’? A multistakeholder nominal group technique study to inform rehabilitation outcome measurement; in preparation), and randomly presented to participants in round 2 to prevent an order effect.…”

What is ‘successful rehabilitation’? A multi-stakeholder nominal group technique study to inform rehabilitation outcome measurement

“…Measuring this construct may also necessitate a move beyond the discipline specific measures of process and outcome evident in existing datasets. 9 Rehabilitation is recognised as a life-long journey, on the basis that improvement can continue in various forms beyond what was formerly believed to be a timelimited 'window' for recovery. 25 Continuity of care is logistically challenging to measure across different providers, and much rehabilitation data collection focusses on the immediate outcomes of episodes of care rather than longer-term outcomes.…”