Measuring value and outcomes in rehabilitation: development of a minimum dataset

Dr Adrienne Young1, Dr Sarah Wallace2, Mr Joshua Lowe2, Ms Hannah Chung2, Ms Sonia Sam1, Ms Alicia Chaplain1, Ms Amandine Barnett3, Assoc Prof Katrina  Campbell3,4

1Royal Brisbane And Women’s Hospital, Herston, Australia, 2University of Queensland, St Lucia, Australia, 3Griffith University, Nathan, Australia, 4Metro North Hospital and Health Service, Herston, Australia

Background and aims: The shift towards value-based healthcare necessitates collection of data that measure patient-centred outcomes, rather than typical cost, activity and efficiency metrics. This research aimed to develop a minimum dataset (MDS) for rehabilitation services informed by end-users (rehabilitation clinicians, managers, researchers, patients, carers) for implementation into practice to enable service improvement and research.

Methods: Development of the MDS was informed by a scoping review of published and grey literature (existing core outcome sets, MDS and clinical registries), focus groups with end-users (asking ‘what does successful rehabilitation look like?’) and a three-round eDelphi (asking ‘what data should be routinely collected on all patients in rehabilitation?’).

Results: The scoping review identified common data items and outcomes across existing datasets relevant to rehabilitation datasets (7 core outcome sets, 5 MDS, 15 registries). Focus groups (n=32) identified that dataset development should consider these key aspects of rehabilitation: person and family centred, inter-professional, goal oriented, accessible, connected to the continuum of care, engaging and meaningful. The eDelphi (n=38) generated 216 data items, of which 111 reached consensus. The final MDS includes the following domains: demographics (7 items), premorbid health (4 items), premorbid functional and community participation (9 items), admission information (7 items), caregiver information (7 items), interventions (11 items), and patient and caregiver outcomes and experience (10 items).

Conclusion: This MDS provides a single, consolidated dataset to measure the value of rehabilitation using data items co-designed with end-users including patients and carers. Data items are currently being defined ready for implementation.

Acknowledgements: Funded by a Metro North Hospital and Health Service and University of Queensland Collaborative Research Grant; Menzies Health Institute Queensland Collaborative Research Grant.


Dr Adrienne Young is a Research Coordinator in Allied Health at RBWH. Her research to date has focused on improving care of older people in hospital, with increasing attention to co-designing these improvements with patients and their families. Her interest in value-based healthcare similarly has an emphasis on outcomes and value as defined by our patients and their families.

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