Living with Parkinson's disease: Priorities for research suggested by patients

Parkinsonism and Related Disorders

Volumn 20, Issue 8, 2014, Pages 862-866

  Schipper, K ^a   Dauwerse, L ^a   Hendrikx, A ^a   Leedekerken, J W ^b   Abma, T A ^a  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b Dutch Patients' Association for Parkinson's Disease   (Netherlands)

Author keywords

Mixed methods; Parkinson's disease; Patient perspectives; Research agenda

Indexed keywords

ADULT; APPLIED RESEARCH; ARTICLE; COPING BEHAVIOR; DRUG RESEARCH; FAMILY RELATION; FEMALE; HEALTH PERSONNEL ATTITUDE; HUMAN; INTERDISCIPLINARY RESEARCH; INTERVIEW; MAJOR CLINICAL STUDY; MALE; PARKINSON DISEASE; PATIENT ATTITUDE; PRIORITY JOURNAL; QUESTIONNAIRE; RESEARCH PRIORITY; SCIENTIST; AGED; INFORMATION PROCESSING; METHODOLOGY; MIDDLE AGED; PATIENT PARTICIPATION; QUALITATIVE RESEARCH;

AGED; FEMALE; FOCUS GROUPS; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PARKINSON DISEASE; PATIENT PARTICIPATION; QUALITATIVE RESEARCH; QUESTIONNAIRES; RESEARCH DESIGN;

EID: 84905283110     PISSN: 13538020     EISSN: 18735126     Source Type: Journal    
DOI: 10.1016/j.parkreldis.2014.04.025     Document Type: Article

References (29)

1. Schipper K. Patient participation & knowledge 2011, [dissertation], VU University Press, Amsterdam.
2. Elwyn G., Crowe S., Fenton M., Firkins L., Versnel J., Walker S., et al. Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions. JEval Clin Pract 2010, 16:627-631.
3. van der Eijk M., Nijhuis F.A.P., Faber M.J., Bloem B.R. Moving from physician-centered care towards patient-centered care for Pakinson's disease patients. Parkinsonism Relat Disord 2013, 19(11):923-927.
4. Evers A.W., Rovers M.M., Kremer J.A., Veltman J.A., Schalken J.A., Bloem B.R., et al. An integrated framework of personalized medicine: from individual genomes to participatory healthcare. Croat Med J 2012, 53(4):301-303.
5. Grosset K.A., Grosset D.G. Patient-perceived involvement and satisfaction in Parkinson's disease: effect on therapy decisions and quality of life. Mov Disord 2005, 20:616-619.
6. Hirsch M.A., Sanjak M., Englert D., Iyer S.S., Quinlan M.M. Parkinson patients as partners in care. Parkinsonism Relat Disord 2014 Jan, 20(Suppl.1):S174-S179.
7. Abma T.A., Nierse C.J., Widdershoven G.A.M. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qual Health Res 2009, 19:401-415.
8. van Peeperstraten A.M., Nelen W., Grol R., Zielhuis G., Adang E., Stalmeier P., et al. The effect of multifaceted empowerment strategy on decions making about the number of embryos transferred in invitro fertilization: randomized controlled trial. Br Med J 2010, 340:c2501. 10.1136/bmj.c2501.
9. Abma T.A. Patient participation in health research: research with and for people with spinal cord injuries. Qual Health Res 2005, 15:1310-1328.
10. Caron-Flinterman J.F., Broerse J.E., Teerling J., Bunders J.F. Patients' priorities concerning health research: the case of asthma and COPD research in the Netherlands. Health Expect 2005, 8:253-263.
11. Broerse J.E.W., Zweekhorst M.B.M., van Rensen A.J.M.L., de Haan M.J. Involving burn survivors in agenda setting on burn research: an added value?. Burns 2010, 36:217-231.
12. Schipper K., Abma T. Coping, family and mastery: top priorities for social science research by patients with chronic kidney disease. Nephrol Dial Transplant 2011, 26(10):3071-3074.
13. Welfare M.R., Colligan J., Molyneux S., Pearson P., Barton J.R. The identification of topics for research that are important to people with ulcerative colitis. Eur J Gastroenterol Hepatol 2006, 18:939-944.
14. 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.
15. Nierse C.J., Abma T.A., Horemans A.M., van Engelen B.G. Research priorities of patients with neuromuscular disease. Disabil Rehabil 2013, 35(5):405-412.
16. de Wit M.P.T., Berlo S.E., Aanerud G.J., Aletaha D., Bijlsma J.W., Croucher L., et al. European league against rheumatism recommendations for the inclusion of patient representatives in scientific projects. ARD 2011, 10.1136/ard.2010.135129.
17. Kuper A., Reeves S., Levinson W. Qualitative research. An introduction to reading and appraising qualitative research. Br Med J 2008, 337:404-407.
18. Mertens D.M. Research and evaluation in education and psychology. integrating diversity with quantitative, qualitative and mixed methods 2010, Sage publications, Thousand Oaks, California.
19. Abma T.A., Broerse J.E.W. Patient participation as dialogue: setting research agendas. Health Expect 2010, 13:160-173.
20. Schipper K., Abma T.A., van Zadelhoff E., van de Griendt J., Christi Nierse, Widdershoven G.A.M. What does it mean to be a patient research partner? an ethnodrama. Qual Inq 2010, 16:501-510.
21. Nierse C.J., Schipper K., van Zadelhoff E., van de Griendt J., Abma T.A. Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professionals in a research team. Health Expect 2012, 15(3):242-254.
22. Hewlett S., de Wit M., Richards P., Quest E., Hughes R., Heiberg T., et al. Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis Rheum 2006, 55:676-680.
23. Barbour R.S. Checklist for improving rigour in qualitative research: a case of the tail. Br Med J 2001, 322(7294):1115-1117.
24. Mays N. Qualitative research in health care. Assessing quality in qualitative research. Br Med J 2000, 320(7226):50-52.
25. Weber R.P. Basic content analysis 1990, Sage Publications, Newbury Park, CA.
26. Kuper A., Lingard L., Levinson W. Critically appraising qualitative research. Br Med J 2008, 337:687-689.
27. Krueger R.A., Casey M.A. Apractical guide for applied research 2000, Focus Groups, Sage Publications, Thousand Oaks, CA. 3rd ed.
28. Denzin N.K., Lincoln Y.S. Handbook of qualitative research 2000, Sage, Thousand Oaks, CA.
29. Teunissen T., Visse M., de Boer P., Abma T.A. Patient issues in health research and quality of care: an inventory and data synthesis. Health Expect 2011, 10.1111/j.1369-7625.2011.00718.x.