Rehabilitation seeks to optimize functioning of people with impairments and includes a range of specific health services—diagnosis, treatment, surgery, assistive devices, and therapy. Evidence on access to rehabilitation services for people with disabilities in low- and middle-income countries (LMICs) is limited. A systematic review was conducted to examine this in depth. In February 2017, six databases were searched for studies measuring access to rehabilitation among people with disabilities in LMICs. Eligible measures of access to rehabilitation included: use of assistive devices, use of specialist health services, and adherence to treatment. Two reviewers independently screened titles, abstracts, and full texts. Data was extracted by one reviewer and checked by a second. Of 13,048 screened studies, 77 were eligible for inclusion. These covered a broad geographic area. 17% of studies measured access to hearing-specific services; 22% vision-specific; 31% physical impairment-specific; and 44% measured access to mental impairment-specific services. A further 35% measured access to services for any disability. A diverse range of measures of disability and access were used across studies making comparability difficult. However, there was some evidence that access to rehabilitation is low among people with disabilities. No clear patterns were seen in access by equity measures such as age, locality, socioeconomic status, or country income group due to the limited number of studies measuring these indicators, and the range of measures used. Access to rehabilitation services was highly variable and poorly measured within the studies in the review, but generally shown to be low. Far better metrics are needed, including through clinical assessment, before we have a true appreciation of the population level need for and coverage of these services.
Background: A core outcome set (COS; an agreed, minimum set of outcomes) was needed to address the heterogeneous measurement of outcomes in aphasia treatment research and to facilitate the production of transparent, meaningful and efficient outcome data. Objective: The Research Outcome Measurement in Aphasia (ROMA) consensus statement provides evidence-based recommendations for the measurement of outcomes for adults with post-stroke aphasia within phase I-IV aphasia treatment studies. Methods: This statement was informed by a four-year program of research which comprised investigation of stakeholder-important outcomes using consensus processes, a scoping review of aphasia outcome measurement instruments, and an international consensus meeting. This paper provides an overview of this process and presents the results and recommendations arising from the international consensus meeting. Results: Five essential outcome constructs were identified: Language, communication, patient-reported satisfaction with treatment and impact of treatment, emotional wellbeing, and quality of life. Consensus was reached for the following measurement instruments: Language: The Western Aphasia Battery Revised (WAB-R) (74% consensus); emotional well-being: General Health Questionnaire (GHQ)-12 (83% consensus); quality of life: Stroke and Aphasia Quality of Life Scale (SAQOL-39) (96% consensus). Consensus was unable to be reached for measures of communication (where multiple measures exist) or patientreported satisfaction with treatment or impact of treatment (where no measures exist). Discussion: Harmonisation of the ROMA COS with other core outcome initiatives in stroke rehabilitation is discussed. Ongoing research and consensus processes are outlined. Conclusion: The WAB-R, GHQ-12, and SAQOL-39 are recommended to be routinely included within phase I-IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the ROMA consensus panel
This is the accepted version of the paper.This version of the publication may differ from the final published version. Permanent repository link:http://openaccess.city.ac.uk/15003/ Link to published version: http://dx.doi.org/10. 1080/09638288.2016.1194899 Copyright and reuse: City Research Online aims to make research outputs of City, University of London available to a wider audience. Copyright and Moral Rights remain with the author(s) and/or copyright holders. URLs from City Research Online may be freely distributed and linked to. City Research Online: http://openaccess.city.ac.uk/ publications@city.ac.uk City Research OnlineAbstract Purpose: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. Methods:The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking.Results: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services.Prioritised outcomes for both participant groups linked to all ICF components; primarily Activity/Participation (39%) and Body Functions (36%) for people with aphasia, and Activity/Participation (49%) and Environmental Factors (28%) for family members.Outcomes prioritised by family members relating to the person with aphasia, primarily linked to Body Functions (60%). Conclusions:People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of Body Function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a familycentred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Achieving outcomes that are important to consumers is a key factor in maximising the value of healthcare (Porter & Lee, 2013). This conceptualisation of value reflects a broader shift in health care towards person-centred services which seek to meet individual needs in holistic ways (World Health Organization., 2007). In aphasia rehabilitation, the value of measuring consumer-important outcomes has steadily gained momentum in ...
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