602
Views
32
CrossRef citations to date
0
Altmetric
Research Papers

Research priorities of patients with neuromuscular disease

, , &
Pages 405-412 | Received 10 Nov 2011, Accepted 01 May 2012, Published online: 02 Jul 2012

References

  • Hartley SE, Goodwin PC, Goldbart J. Experiences of attendance at a neuromuscular centre: perceptions of adults with neuromuscular disorders. Disabil Rehabil 2011;33:1022–1032.
  • Scherer MJ, Lane JP. Assessing consumer profiles of ‘ideal’ assistive technologies in ten categories: an integration of quantitative and qualitative methods. Disabil Rehabil 1997;19:528–535.
  • Wicks P, Frost J. ALS patients request more information about cognitive symptoms. Eur J Neurol 2008;15:497–500.
  • Wain HR, Kneebone II, Billings J. Patient experience of neurologic rehabilitation: a qualitative investigation. Arch Phys Med Rehabil 2008;89:1366–1371.
  • Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: advantages for health research. BMJ 1998;316:463–466.
  • Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. Lancet 2000;355:2037–2040.
  • Liberty KA, Laver A, Sabatino D. Collaborative partnerships in evaluation and experimental rehabilitation research. Int J Rehabil Res 1999;22:283–290.
  • Schipper K, Abma TA. Coping, family and mastery: top priorities for social science research by patients with chronic kidney disease. Nephrol Dial Transplant 2011;26:3189–3195.
  • Tong A, Sainsbury P, Carter SM, Hall B, Harris DC, Walker RG, Hawley CM, et al. Patients’ priorities for health research: focus group study of patients with chronic kidney disease. Nephrol Dial Transplant 2008;23:3206–3214.
  • Abma TA. Patient participation in health research: research with and for people with spinal cord injuries. Qual Health Res 2005;15:1310–1328.
  • Caron-Flinterman JF, Broerse JE, Teerling J, Bunders JF. Patients’ priorities concerning health research: the case of asthma and COPD research in the Netherlands. Health Expect 2005;8:253–263.
  • Abma TA, Broerse JE. Patient participation as dialogue: setting research agendas. Health Expect 2010;13:160–173.
  • Wright D, Corner J, Hopkinson J, Foster C. Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda. Health Expect 2006;9:3–12.
  • Welfare MR, Colligan J, Molyneux S, Pearson P, Barton JR. The identification of topics for research that are important to people with ulcerative colitis. Eur J Gastroenterol Hepatol 2006;18:939–944.
  • Nierse CJ, Abma TA. Developing voice and empowerment: the first step towards a broad consultation in research agenda setting. J Intellect Disabil Res 2011;55:411–421.
  • Rabeharisoa V. The struggle against neuromuscular diseases in France and the emergence of the “partnership model” of patient organisation. Soc Sci Med 2003;57:2127–2136.
  • Rabeharisoa V. From representation to mediation: the shaping of collective mobilization on muscular dystrophy in France. Soc Sci Med 2006;62:564–576.
  • Boon W, Broekgaarden R. The role of patient advocacy organisations in neuromuscular disease R&D–The case of the Dutch neuromuscular disease association VSN. Neuromuscul Disord 2010;20:148–151.
  • Streng P. From diagnosis to treatment [“Van diagnose tot therapie”]. ZonMw Conference “Involvement in science” [Zeggenschap in wetenschap] World Trade Center Rotterdam the Netherlands, 7 November 2003.
  • Britten N. Qualitative interviews in medical research. BMJ 1995;311:251–253.
  • Balch G, Mertens DM. Focus group design and group dynamics: Lessons from deaf and hard of hearing participants. Am J Eval 1999;20:265–277.
  • Kitzinger J. Qualitative research. Introducing focus groups. BMJ 1995;311:299–302.
  • Greene JC. Mixed methods in social inquiry. San Francisco: Jossey-Bass; 2007.
  • Curry LA, Nembhard IM, Bradley EH. Qualitative and mixed methods provide unique contributions to outcomes research. Circulation 2009;119:1442–1452.
  • Kuper A, Lingard L, Levinson W. Critically appraising qualitative research. BMJ 2008;337:a1035.
  • Abma TA. Patients as partners in a health research agenda setting: the feasibility of a participatory methodology. Eval Health Prof 2006;29:424–439.
  • Abma TA, Nierse CJ, Widdershoven GA. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qual Health Res 2009;19:401–415.
  • Nierse CJ, Schipper K, van Zadelhoff E, van de Griendt J, Abma TA. Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expect 2011; doi: 10.1111/j.1369-7625.2011.00661.x.
  • Epstein S. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Sci Technol Human Values 1995;20:408–437.
  • Caron-Flinterman JF, Broerse JE, Bunders JF. The experiential knowledge of patients: a new resource for biomedical research? Soc Sci Med 2005;60:2575–2584.
  • Kalkman JS, Zwarts MJ, Schillings ML, van Engelen BG, Bleijenberg G. Different types of fatigue in patients with facioscapulohumeral dystrophy, myotonic dystrophy and HMSN-I. Experienced fatigue and physiological fatigue. Neurol Sci 2008;29 Suppl 2:S238–S240.
  • Minis MA, Kalkman JS, Akkermans RP, Engels JA, Huijbregts PA, Bleijenberg G, Oostendorp RA, van Engelen BG. Employment status of patients with neuromuscular diseases in relation to personal factors, fatigue and health status: a secondary analysis. J Rehabil Med 2010;42:60–65.
  • Erdmann PG, Lindeman E, Cats EA, van den Berg LH. Functioning of patients with multifocal motor neuropathy. J Peripher Nerv Syst 2010;15:113–119.
  • Cup EHC. Occupational therapy, physical therapy and speech therapy for persons with neuromuscular diseases. An evidence based orientation. Nijmegen: Radboud University Nijmegen Medical Centre, 2011.
  • De Groot IJ, Post MW, van Heuveln T, Van den Berg LH, Lindeman E. Cross-sectional and longitudinal correlations between disease progression and different health-related quality of life domains in persons with amyotrophic lateral sclerosis. Amyotroph Lateral Scler 2007;8:356–361.
  • Voet NB, Bleijenberg G, Padberg GW, van Engelen BG, Geurts AC. Effect of aerobic exercise training and cognitive behavioural therapy on reduction of chronic fatigue in patients with facioscapulohumeral dystrophy: protocol of the FACTS-2-FSHD trial. BMC Neurol 2010;10:56.
  • Schipper K, Visser-Meily JM, Hendrikx A, Abma TA. Participation of people with acquired brain injury: Insiders perspectives. Brain Inj 2011;25:832–843.
  • Cardol M, de Jong BA, van den Bos GA, Beelem A, de Groot IJ, de Haan RJ. Beyond disability: perceived participation in people with a chronic disabling condition. Clin Rehabil 2002;16:27–35.
  • Hammel J, Magasi S, Heinemann A, Whiteneck G, Bogner J, Rodriguez E. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil 2008;30:1445–1460.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.