References
- Porter ME, Lee TH. The strategy that will fix health care. Harvard Bus Rev. 2013;91:50.
- World Health Organization. People-centred health care. A policy framework. [Internet]. Available from: http://www.wpro.who.int/health_services/people_at_the_centre_of_care/documents/ENG-PCIPolicyFramework.pdf2007
- Kagan A, Simmons-Mackie N, Rowland A, et al. Counting what counts: a framework for capturing real-life outcomes of aphasia intervention. Aphasiology. 2008;22:258–280.
- Brady MC, Kelly H, Godwin J, et al. Speech and language therapy for aphasia following stroke. [Internte]. Cochrane Database of Systematic Reviews 2012. Available from: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD000425.pub3/abstract
- Elsner B, Kugler J, Pohl M, et al. Transcranial direct current stimulation (tDCS) for improving aphasia in patients with aphasia after stroke. Cochrane Database Syst Rev. 2015;5:CD009760.
- Xiong T, Bunning K, Horton S, et al. Assessing and comparing the outcome measures for the rehabilitation of adults with communication disorders in randomised controlled trials: an international classification of functioning, disability and health approach. Disabil Rehabil. 2011;33:2272–2290.
- Williamson P, Clarke M. The COMET (Core Outcome Measures in Effectiveness Trials) initiative: its role in improving cochrane reviews. Cochrane Database Syst Rev. 2012;5:ED000041.
- Clarke M. Standardising outcomes for clinical trials and systematic reviews. Trials. 2007;8:39.
- Williamson PR, Altman DG, Blazeby JM, et al. Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13:132.
- Brady MC, Ali M, Fyndanis C, et al. Time for a step change? Improving the efficiency, relevance, reliability, validity and transparency of aphasia rehabilitation research through core outcome measures, a common data set and improved reporting criteria. Aphasiology. 2014;28:1385–1392.
- European Commission. Horizon 2020 Research and Innovation Action: Comparing the effectiveness of existing healthcare interventions in the adult population (SC1-PM-10-2017). Available from: http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/h2020/topics/2435-sc1-pm-10-2017.html.
- Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy. 2002;61:213–236.
- UN General Assembly. Convention on the rights of persons with disabilities. 2006. [Internet]. Available from: http://www.un.org/.
- World Health Organization. Geneva: World Health Organization. 2011 [Internet]. Available from: www.who.int.
- National Health and Medical Research Council. The Consumers Health Forum of Australia Inc. Statement on Consumer and Community Participation in Health and Medical Research. Canberra: Commonwealth of Australia; 2002.
- National Health and Medical Research Council. The Consumers Health Forum of Australia Inc. A model framework for consumer and community participation in health and medical research. Canberra: Commonwealth of Australia; 2005.
- Department of Health. Equity and excellence. Liberating the NHS. London: DH; 2010.
- O'Donnell M, Entwistle V. Consumer involvement in decisions about what health-related research is funded. Health Policy. 2004;70:281–290.
- National Institute for Health Research. Programme grants for applied research: Multimorbidities themed calls. 2015.
- Chan A-W, Tetzlaff JM, Gøtzsche PC, et al. SPIRIT 2013 explanation and elaboration: guidance for protocols of clinical trials. BMJ. 2013;346:e7586.
- Higgins J, Green S. Cochrane Handbook for Systematic Reviews of Interventions. Version 5.1.0 [updated March 2011]. The Cochrane Collaboration; 2011.[Internet]. Available from: http://handbook.cochrane.org/.
- de Wit M, Abma T, Koelewijn-van Loon M, et al. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open. 2013;3:e002241.
- Serrano-Aguilar P, Trujillo-Martin MM, Ramos-Goni JM, et al. Patient involvement in health research: a contribution to a systematic review on the effectiveness of treatments for degenerative ataxias. Soc Sci Med. 2009;69:920–925.
- Carr A, Hewlett S, Hughes R, et al. Rheumatology outcomes: the patient's perspective. J Rheumatol. 2003;30:880–883.
- Sanderson T, Hewlett S, Calnan M, et al. Exploring the cultural validity of rheumatology outcomes. Br J Nurs. 2012;21:1015–1020.
- Sanderson T, Morris M, Calnan M, et al. What outcomes from pharmacologic treatments are important to people with rheumatoid arthritis? Creating the basis of a patient core set. Arthritis Care Res (Hoboken). 2010;62:640–646.
- Arnold LM, Crofford LJ, Mease PJ, et al. Patient perspectives on the impact of fibromyalgia. Patient Educ Couns. 2008;73:114–120.
- Kirwan J, Heiberg T, Hewlett S, et al. Outcomes from the patient perspective workshop at OMERACT 6. J Rheumatol. 2003;30:868–872.
- Mease PJ, Arnold LM, Crofford LJ, et al. Identifying the clinical domains of fibromyalgia: contributions from clinician and patient Delphi exercises. Arthritis Rheum. 2008;59:952–960.
- Sinha IP, Gallagher R, Williamson PR, et al. Development of a core outcome set for clinical trials in childhood asthma: a survey of clinicians, parents, and young people. Trials. 2012;13:103.
- Morris C, Janssens A, Allard A, et al. Informing the NHS outcomes framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting. Health Serv Deliv Res. 2014;2:
- Bartlett SJ, Hewlett S, Bingham CO, 3rd, et al. Identifying core domains to assess flare in rheumatoid arthritis: an OMERACT international patient and provider combined Delphi consensus. Ann Rheum Dis. 2012;71:1855–1860.
- Kirwan JR, Fries JF, Hewlett SE, et al. Patient perspective workshop: moving towards OMERACT guidelines for choosing or developing instruments to measure patient-reported outcomes. J Rheumatol. 2011;38:1711–1715.
- de Wit MP, Abma TA, Koelewijn-van Loon MS, et al. What has been the effect on trial outcome assessments of a decade of patient participation in OMERACT? J Rheumatol. 2014;41:177–184.
- Worrall L, Sherratt S, Rogers P, et al. What people with aphasia want: their goals according to the ICF. Aphasiology. 2011;25:309–322.
- Brown K, Worrall LE, Davidson B, et al. Living successfully with aphasia: a qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists. Int J Speech-Lang Pathol. 2011;14:141–155.
- Grawburg M, Howe T, Worrall L, et al. Third-party disability in family members of people with aphasia: a systematic review. Disabil Rehabil. 2013;35:1324–1341.
- Howe T, Davidson B, Worrall L, et al. You needed to rehab families as well': family members' own goals for aphasia rehabilitation. Int J Lang Commun Disord. 2012;47:511–521.
- Heiligenhaus A, Foeldvari I, Edelsten C, et al. Proposed outcome measures for prospective clinical trials in juvenile idiopathic arthritis-associated uveitis: a consensus effort from the multinational interdisciplinary working group for uveitis in childhood. Arthritis Care Res (Hoboken). 2012;64:1365–1372.
- Schmitt J, Langan S, Stamm T, et al. Harmonizing outcome measurements in Eczema Delphi p. Core outcome domains for controlled trials and clinical recordkeeping in eczema: international multiperspective Delphi consensus process. J Invest Dermatol. 2011;131:623–630.
- Ginsburg F, Rapp R. Disability worlds. Annu Rev Anthropol. 2013;42:53–68.
- World Health Organization. World Health Organization: International classification of functioning, disability and health (ICF). Geneva, Switzerland: World Health Organization; 2001.
- Cruice M. The contribution and impact of the international classification of functioning, disability and health on quality of life in communication disorders. Int J Speech-Lang Pathol. 2008;10:38–49.
- Howe TJ, Worrall LE, Hickson LMH. Interviews with people with aphasia: environmental factors that influence their community participation. Aphasiology. 2008;22:1092–1120.
- Grawburg M, Howe T, Worrall L, et al. Describing the impact of aphasia on close family members using the ICF framework. Disabil Rehabil. 2013;36:1184–1195.
- Salter K, Jutai JW, Teasell R, et al. Issues for selection of outcome measures in stroke rehabilitation: ICF activity. Disabil Rehabil. 2005;27:315–340.
- Salter K, Jutai J, Teasell R, et al. Issues for selection of outcome measures in stroke rehabilitation: ICF participation. Disabil Rehabil. 2005;27:507–528.
- Salter K, Jutai J, Teasell R, et al. Issues for selection of outcome measures in stroke rehabilitation: ICF body functions. Disabil Rehabil. 2005;27:191–207.
- Brandenburg C, Worrall L, Rodriguez A, et al. Crosswalk of participation self-report measures for aphasia to the ICF: what content is being measured? Disabil Rehabil. 2015;37:1113–1124.
- Cieza A, Geyh S, Chatterji S, et al. ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005;37:212–218.
- Cieza A, Brockow T, Ewert T, et al. Linking health-status measurements to the international classification of functioning, disability and health. J Rehabil Med. 2002;34:205–210.
- Wallace SJ, Worrall L, Rose T, et al. Measuring outcomes in aphasia research: a review of current practice and an agenda for standardisation. Aphasiology. 2014;28:1364–1384.
- Wallace SJ, Worrall L, Rose TL, Le Dorze G. Core outcomes in aphasia treatment research: an e-Delphi consensus study of international aphasia researchers. Am J Speech-Lang Pathol, in press.
- Wallace SJ, Worrall L, Rose TL, Le Dorze G. Which treatment outcomes are most important to aphasia clinicians and managers? An international e-Delphi consensus study. Aphasiology. 2016. [Epub02687038.2016.1/02687038.2016.1186265.
- World Health Organization. Definition of Region Groupings. [Internet]. Available from: http://www.who.int/healthinfo/global_burden_disease/definition_regions/en/.2014.
- Kagan A, Kimelman MDZ. Informed consent in aphasia research: Myth or reality? Clin Aphasiol. 1995;23:65–75.
- Rose T, Worrall L, Hickson L, et al. Do people with aphasia want written stroke and aphasia information? a verbal survey exploring preferences for when and how to provide stroke and aphasia information. Top Stroke Rehabil. 2010;17:79–98.
- Delbecq AL, Van de Ven AH, Gustafson DH. Group techniques for program planning: a guide to nominal group and Delphi processes. Glenview, Ill: Scott, Foresman; 1975. p. 174.
- Douglas RS, Tsirbas A, Gordon M, et al. Development of criteria for evaluating clinical response in thyroid eye disease using a modified Delphi technique. Arch Ophthalmol. 2009;127:1155–1160.
- Khanna D, Lovell DJ, Giannini E, et al. Development of a provisional core set of response measures for clinical trials of systemic sclerosis. Ann Rheum Dis. 2008;67:703–709.
- Lamb SE, Jorstad-Stein EC, Hauer K, et al. Prevention of Falls Network E, Outcomes Consensus G. Development of a common outcome data set for fall injury prevention trials: the prevention of falls network Europe consensus. J Am Geriatr Soc. 2005;53:1618–1622.
- Kagan A, Black SE, Duchan JF, et al. Training volunteers as conversation partners using “supported conversation for adults with aphasia” (SCA): a controlled trial. J Speech Lang Hear Res. 2001;44:624–638.
- Garcia LJ, Laroche C, Barrette J. Work integration issues go beyond the nature of the communication disorder. J Commun Disord. 2002;35:187–211.
- Lomas J, Pickard L, Mohide A. Patient versus clinician item generation for quality-of-life measures: the case of language-disabled adults. Med Care. 1987;25:764–769.
- Aspinal F, Hughes R, Dunckley M, et al. What is important to measure in the last months and weeks of life?: a modified nominal group study. Int J Nurs Stud. 2006;43:393–403.
- Vella K, Goldfrad C, Rowan K, et al. Use of consensus development to establish national research priorities in critical care. BMJ. 2000;320:976–980.
- Kagan A. Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology. 1998;12:816–830.
- Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Edu Today. 2004;24:105–112.
- Koch T. Establishing rigour in qualitative research: the decision trail 1993. J Adv Nurs. 2006;53:91–100.
- Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Measure. 1960;20:37–46.
- Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33:159–174.
- Williams SE. The impact of aphasia on marital satisfaction. Arch Phys Med Rehabil. 1993;74:361–367.
- Parr S. Living with severe aphasia: tracking social exclusion. Aphasiology. 2007;21:98–123.
- Cruice M, Worrall L, Hickson L. Quantifying aphasic people's social lives in the context of non‐aphasic peers. Aphasiology. 2006;20:1210–1225.
- Davidson B, Howe T, Worrall L, et al. Social participation for older people with aphasia: the impact of communication disability on friendships. Topics Stroke Rehabil. 2008;15:325–340.
- Northcott S, Hilari K. Why do people lose their friends after a stroke? Int J Lang Commun Disord. 2011;46:524–534.
- Michallet B, Tétreault S, Le Dorze G. The consequences of severe aphasia on the spouses of aphasic people: a description of the adaptation process. Aphasiology. 2003;17:835–859.
- Pellerin C, Rochette A, Racine E. Social participation of relatives post-stroke: the role of rehabilitation and related ethical issues. Disabil Rehabil. 2011;33:1055–1064.
- Le Dorze G, Signori FH. Needs, barriers and facilitators experienced by spouses of people with aphasia. Disabil Rehabil. 2010;32:1073–1087.