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Research Papers

Perceptions of persons with Parkinson's disease, family and professionals on quality of life: an international focus group study

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Pages 2490-2508 | Accepted 01 Mar 2011, Published online: 06 May 2011

References

  • De Lau LM, Breteler MM. Epidemiology of Parkinson's disease. Lancet Neurol 2006;5:525–535.
  • Nussbaum RL, Ellis CE. Alzheimer's disease and Parkinson's disease. N Engl J Med 2003;348:1356–1364.
  • Rajput AH. Frequency and cause of Parkinson's disease. Can J Neurol Sci 1992;19:103–107.
  • De Rijk MC, Breteler MMB, Graveland GA, Ott A, van der Meché FGA, Hofman A. De prevalentie van parkinsonisme en de ziekte van Parkinson bij ouderen: Het ERGO-onderzoek. Nederlands Tijdschrift voor Geneeskunde 1996;140:196–200.
  • Von Campenhausen S, Bornschein B, Wick R, Botzel K, Sampaio C, Poewe W, Oertel W, Siebert U, Berger K, Dodel R. Prevalence and incidence of Parkinson's disease in Europe. Eur Neuropsychopharmacol 2005;15:473–490.
  • Samii A, Nutt JG, Ransom BR. Parkinson's disease. Lancet 2004;363:1783–1793.
  • Litvan I, Bhatia KP, Burn DJ, Goetz CG, Lang AE, McKeith I, Quinn N, Sethi KD, Shults C, Wenning GK. Movement disorders society scientific issues committee report: SIC Task Force appraisal of clinical diagnostic criteria for Parkinsonian disorders. Mov Disord 2003;18:467–486.
  • Chaudhuri KR, Healy DG, Schapira AH. Non-motor symptoms of Parkinson's disease. Diagnosis and management. Lancet Neurol 2006;5:235–245.
  • Carr AJ, Higginson IJ. Are quality of life measures patient centred? BMJ 2001;322:1357–1360.
  • Hunt SM. The problem of quality of life. Qual Life Res 1997;6:205–212.
  • Smith KW, Avis NE, Assmann SF. Distinguishing between quality of life and health status in quality of life research: a meta-analysis. Qual Life Res 1999;8:447–459.
  • Den Oudsten BL, Van Heck GL, De Vries J. Quality of life and related concepts in Parkinson's disease: a systematic review. Mov Disord 2007;22:1528–1537.
  • Den Oudsten BL, Van Heck GL, De Vries J. The suitability of patient-based measures in the field of Parkinson's disease: a systematic review. Mov Disord 2007;22:1390–1401.
  • Testa MA, Simonson DC. Assesment of quality-of-life outcomes. N Engl J Med 1996;334:835–840.
  • Calman KC. Quality of life in cancer patients – a hypothesis. J Med Ethics 1984;10:124–127.
  • Cella D, Tulsky DS. Measuring quality of life today: methodological aspects. Oncology 1990;5:29–38.
  • Lehman AF. Measures of quality of life among persons with severe and persistent mental disorders. Soc Psychiatry Psychiatr Epidemiol 1996;31:78–88.
  • WHOQOL group. The development of the World Health Organization Quality of Life Assessment instrument (the WHOQOL). Quality of life assessment: International perspectivesIn: Orley J, Kuyken W, editors. Berlin: Springer-Verlag1994. pp 19–32.
  • Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA 1994;272:619–626.
  • Moons P, Budts W, De Geest S. Critique on the conceptualisation of quality of life: a review and evaluation of different conceptual approaches. Int J Nurs Stud 2006;43:891–901.
  • Orley J, Saxena S, Herrman H. Quality of life and mental illness. Reflections from the perspective of the WHOQOL (editorial). Br J Psychiatry 1998;172:291–293.
  • WHOQOL group. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995;41:1403–1409.
  • WHOQOL group. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998;46:1569–1585.
  • WHOQOL group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL group. Psychol Med 1998;28:551–558.
  • Power MJ, Green AM. Development of the WHOQOL disabilities module. Qual Life Res 2010;19:571–584.
  • Nicolson P, Anderson P. The psychosocial impact of spasticity-related problems for people with multiple sclerosis: a focus group study. J Health Psychol 2001;6:551–567.
  • Schulze B, Angermeyer MC. Subjective experiences of stigma. A focus group study of schizophrenic patients, their relatives and mental health professionals. Soc Sci Med 2003;56:299–312.
  • Howard E, Hubelbank J, Moore P. Employer evaluation of graduates: use of the focus group. Nurse Educ 1989;14:38–41.
  • Morgan DL. Focus groups as qualitative research. Beverly Hills, CA: Sage1988.
  • Stewart DW, Shamdasani PM. Focus groups: theory and practice applied social research methods. Series ed., vol. 20. Newbury Park, CA: Sage1990.
  • Kitzinger J. Qualitative research. Introducing focus groups. BMJ 1995;311:299–302.
  • Morgan DL, Spanish MT. Focus groups: a new tool for qualitative research. Qual Soc 1984;7:253–270.
  • Morgan DL. Focus groups. Annu Rev Sociol 1996;22:129–152.
  • Ferrell BR, Grant MM, Funk B, Otis-Green S, Garcia N. Quality of life in breast cancer survivors as identified by focus groups. Psychooncology 1997;6:13–23.
  • De Vries J, Seebregts A, Drent M. Assessing health status and quality of life in idiopathic pulmonary fibrosis: which measure should be used? Respir Med 2000;94:273–278.
  • Thomas VJ, Taylor LM. The psychosocial experience of people with sickle cell disease and its impact on quality of life: qualitative findings from focus groups. Br J Health Psychol 2002;7:345–363.
  • Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999;48:977–988.
  • Davis J, Ehrhart A, Trzcinski B, Kille S, Mount J. Variability of experiences for individuals living with Parkinson's disease. Neurol Rep 2003;27:38–45.
  • Hawthorne G, Davidson N, Quinn K, McCrate F, Winkler I, Lucas R, Kilian R, Molzahn A. Issues in conducting cross-cultural research: implementation of an agreed international procotol designed by the WHOQOL Group for the conduct of focus groups eliciting the quality of life of older adults. Qual Life Res 2006;15:1257–1270.
  • WHOQOL group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med 1998;28:551–558.
  • Bullinger M, Power MJ, Aronson NK, Cella DF, Anderson RT. Creating and evaluating cross-cultural instruments. 2nd edHagerstown, MD: Lippincott-Raven1996.
  • Glaser B, Strauss A. The discovery of grounded theory. New York Ladine de Gruyter1967.
  • Strauss A, Corbin J. Basics of qualitative research: grounded theory procedures and techniques. London, UK: Sage1990.
  • Abudi S, Bar-Tal Y, Ziv L, Fish M. Parkinson's disease symptoms–patients' perceptions. J Adv Nurs 1997;25:54–59.
  • Heffernan C, Jenkinson C. Measuring outcomes for neurological disorders: a review of disease-specific health status instruments for three degenerative neurological conditions. Chronic Illn 2005;1:131–142.
  • Brown RG, Dittner A, Findley L, Wessely SC. The Parkinson fatigue scale. Parkinsonism Relat Disord 2005;11:49–55.
  • Caap-Ahlgren M, Dehlin O. Insomnia and depressive symptoms in patients with Parkinson's disease – Relationship to health-related quality of life. An interview study of patients living at home. Arch Gerontol Geriat 2001;32:23–33.
  • Dressen C, Brandel JP, Schneider A, Magar Y, Renon D, Ziegler M. Effects of Parkinson's disease on quality-of-life patients' spouses: a qualitative survey. Rev Neurol (Paris) 2007;163:801–807.
  • WHOQOL HIV Group. Initial steps to developing the World Health Organization's Quality of Life Instrument (WHOQOL) module for international assessment in HIV/AIDS. AIDS Care 2003;15:347–357.
  • Nicolson P, Anderson P. Quality of life, distress and self-esteem: a focus group study of people with chronic bronchitis. Br J Health Psychol 2003;8:251–270.
  • Denollet J, De Vries J. Positive and negative affect within the realm of depression, stress and fatigue: the two-factor distress model of the Global Mood Scale (GMS). J Affect Disord 2006;91:171–180.

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