ABSTRACT
Aims: To develop a structured goal-set for use in programs for the assessment and management of prolonged disorders of consciousness (PDOC).
Methods: A retrospective analysis of goals from a consecutive cohort of patients (n = 162) admitted to a specialist in-patient PDOC program in the UK from 2007 to 2018. Overall goal attainment was examined with Goal Attainment Scaling (GAS) using the GAS-Light method. Rates of individual goal-setting and achievement were examined for both standardized objectives (n = 2959) and personalized goals (n = 661). Goal statements from the personalized goals were independently reviewed and mapped to the domains of the existing structured objective set to identify any missing goal areas.
Results: Mean outcome GAS T-scores were 47.2 (95% CI: 46.7, 47.6) and 47.7 (95% CI: 46.7, 48.8), respectively, for the standardized and personally set goals. These were closely correlated (r = 0.482, p < .001) with no significant difference between them. Analysis of goal achievement within each domain identified goals that were/were not likely to be achieved. An initial structured set of 20 standardized objectives in 12 domains was expanded and re-organized to produce a final-structured goal-set of 36 objectives in 18 domains.
Conclusions: Developed through real-life clinical practice, this first published structured goal-set for PDOC programs now requires testing in other services/settings.
Acknowledgments
The authors gratefully acknowledge the patients and family members who have contributed to goal setting in the course of their treatment on the RHRU and who have allowed us to use their data. We also thank RHRU clinical team members for their hard work in building and maintaining the dataset.
Declarations of interest
Outcome measurement in rehabilitation is a specific research interest of the authors.
Lynne Turner-Stokes is the lead for development of the UK national clinical guidelines for PDOC. She, Stephen Ashford and Richard Siegert have also led the development of goal setting and goal attainment scaling in the context of rehabilitation and have published extensively in this area. However, neither they nor their employing institution have any financial interest in the tools which are disseminated free of charge.
All authors are employed by the NHS, King’s College London (KCL) or Auckland University of Technology (AUT), who may cite this article as part of their research evaluation processes, including the UK Research Excellence Framework. We do not consider that any of these relationships or activities have influenced the submitted work.
None of the authors have any personal financial interests in the work undertaken or the findings reported.