Exploring quality of life in Italian patients with rare disease: A computer-aided content analysis of illness stories

Psychology, Health and Medicine

Volumn 19, Issue 2, 2014, Pages 211-221

  Caputo, Andrea ^a  

^a SAPIENZA UNIVERSITY OF ROME   (Italy)

Author keywords

content analysis; illness stories; narrative medicine; quality of life; rare disease

Indexed keywords

ADULT; AMYOTROPHIC LATERAL SCLEROSIS; ANUS ATRESIA; ARTICLE; CLUSTER ANALYSIS; COMPUTER; HUMAN; ITALY; POLAND SYNDROME; PSYCHOLOGICAL ASPECT; PULMONARY HYPERTENSION; QUALITATIVE RESEARCH; QUALITY OF LIFE; RARE DISEASE; UTILIZATION REVIEW; VERBAL COMMUNICATION;

ADULT; AMYOTROPHIC LATERAL SCLEROSIS; ANUS, IMPERFORATE; CLUSTER ANALYSIS; COMPUTERS; HUMANS; HYPERTENSION, PULMONARY; ITALY; NARRATION; POLAND SYNDROME; QUALITATIVE RESEARCH; QUALITY OF LIFE; RARE DISEASES;

EID: 84891891028     PISSN: 13548506     EISSN: None     Source Type: Journal    
DOI: 10.1080/13548506.2013.793372     Document Type: Article

References (56)

1. Albrecht, G.L., & Devlieger, P.J. (1999). The disability paradox: High quality of life against all odds. Social Science & Medicine, 48, 977-988. doi: 10.1016/S0277-9536(98)00411-0 (Pubitemid 29147322)
2. Brewer, G.J. (2009). Drug development for orphan diseases in the context of personalized medicine. Translational Research, 154, 314-322.
3. Caratozzolo, M.C., Marchigiani, E., Parlangeli, O., & Zaccariello, M. (2009). Caring and curing by mixing information and emotions in orphan diseases websites: A twofold analysis. First International Conference HCD, 10, 661-670. doi: 10.1007/978-3-642-02806-9-77
4. Carli, R., & Paniccia, R.M. (2002). L'Analisi Emozionale del Testo [Emotional text analysis]. Milano: Franco Angeli.
5. Charon, R. (2000). Literature and medicine: Origins and destinies. Academic Medicine: Journal of the Association of American Medical Colleges, 75, 23-27. (Pubitemid 30067037)
6. Charon, R. (2006). Narrative medicine. Honoring the stories of illness. New York, NY: Oxford University Press.
7. Charon, R., & Montello, M. (2002). Stories matter. The role of narrative in medical ethics. New York, NY: Routledge.
8. Cohen, J., & Biesecker, B. (2010). Quality of life in rare genetic conditions: A systematic review of the literature. American Journal of Medical Genetics Part A, 152A, 1136-1156.
9. Coulson, N.S. (2005). Receiving social support online: An analysis of a computer-mediated support group for individuals living with irritable bowel syndrome. CyberPsychology & Behavior, 8, 580-584. (Pubitemid 43011136)
10. Daker-White, G., Sanders, C., Greenfield, J., Ealing, J., & Payne, K. (2011). Getting a diagnosis v learning to live with it? The case of the progressive ataxias Chronic Illness, 7, 120-133. doi: 10.1177/1742395310390532
11. European Union Committee of Experts on Rare Diseases. (2012). The 2012 report on the state of the art of rare disease activities in Europe of the European union committee of experts on rare diseases. Retrieved from http://www.eucerd.eu/
12. Fegg, M.J., Kögler, M., Brandstätter, M., Jox, R., Anneser, J., Haarmann-Doetkotte, S., ... Borasio, G.D. (2010). Meaning in life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 11, 469-474. doi: 10.3109/17482961003692604
13. Finkelstein, J., Cha, E., Wood, J. (2012). Use of social media for health education: An example of online support group for individuals with atrial fibrillation. Resource document. eLmL 2012, The Fourth International Conference on Mobile, Hybrid, and On-line Learning. Retrieved from http://www.thinkmind. org/index.php?view=article&articleid=elml-2012-2-10-50036
14. Frank, A. (1995). The wounded story teller. Body, illness, and ethics. Chicago, IL: The University of Chicago Press.
15. Gooden, R.J., & Winefield, H.R. (2007). Breast and prostrate cancer online discussion boards. A thematic analysis of gender differences and similarities. Journal of Health Psychology, 12, 103-114. doi: 10.1177/1359105307071744 (Pubitemid 44871974)
16. Graham, C.D., Rose, M.R., & Simmons, Z. (2012). Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle & Nerve, 46, 9-25. doi: 10.1002/mus.23245
17. Greenacre, M.J. (2007). Correspondence analysis in practices (2nd ed.). Boca Raton, FL: Chapman & Hall/CRC.
18. Greenhalgh, T., & Hurwitz, B. (Eds.). (1998). Narrative based medicine. Dialogue and discourse in clinical practice. London: BMJ Books.
19. Greenhalgh, T., & Hurwitz, B. (1999). Why study narrative? BMJ: British Medical Journal, 318, 48-50. doi: 10.1136/bmj.318.7175.48
20. Griggs, R.C., Batshaw, M., Dunkle, M., Gopal-Srivastava, R., Kaye, E., Krischer, J., ... Merkel, P.A. (2009). Clinical research for rare disease: Opportunities, challenges, and solutions. Molecular Genetics and Metabolism, 96, 20-26.
21. Grootenhuis, M.A., de Boone, J., & van der Kooi, A.J. (2007). Living with muscular dystrophy: Health related quality of life consequences for children and adults. Health and Quality of Life Outcomes, 5, 31. Retrieved from http://www.hqlo.com/content/5/1/31
22. Grut, L., & Kvam, M.H. (2012). Facing ignorance: People with rare disorders and their experiences with public health and welfare services. Scandinavian Journal of Disability Research, 15(1), 20-32. doi: 10.1080/15017419.2011.645870
23. Hampton, T. (2006). Rare disease research gets boost. Journal of the American Medical Association, 295, 2836-2838. doi: 10.1001/jama.295.24.2836 (Pubitemid 43974169)
24. Hurwitz, B. (Ed.). (2004). Narrative research in health and illness. London: BMJ Books, Blackwell.
25. Holtzclaw Williams, P. (2011). Policy framework for rare disease health disparities. Policy, Politics, & Nursing Practice, 12, 114-118. doi: 10.1177/1527154411404243
26. Huyard, C. (2009). What, if anything, is specific about having a rare disorder? Patients' judgements on being ill and being rare Health Expectations, 12, 361-370.
27. Krippendorff, K. (2004). Content analysis: An introduction to its methodology. Thousand Oaks, CA: Sage.
28. Kruer, M.C., & Steiner, R.D. (2008). The role of evidence-based medicine and clinical trials in rare genetic disorders. Clinical Genetics, 74, 197-207. doi: 10.1111/j.1399-0004.2008.01041.x
29. Lancia, F. (2004). Strumenti per l'analisi dei testi. Introduzione all'uso di T-LAB [Tools for text analysis. Introduction to the use of T-LAB]. Milano: Franco Angeli.
30. Lasch, K., Marquis, P., Vigneux, M., Abetz, L., Arnould, B., Bayliss, M., ... Rosa, K. (2010). PRO development: Rigorous qualitative research as the crucial foundation. Quality of Life Research, 19, 1087-1096. doi: 10.1007/s11136-010-9677-6
31. Lasker, J.N., Sogolow, E.D., & Sharim, R.R. (2005). The role of an online community for people with a rare disease: Content analysis of messages posted on a primary biliary cirrhosis mailing list. Journal of Medical Internet Research, 7, e10. Retrieved from http://www.jmir.org/2005/1/e10/
32. Lebart, L., Morineau, A., & Piron, M. (1995). Statistique exploratoire multidimensionnelle [Multidimensional exploratory statistics]. Paris: Dunod.
33. Lulé, D., Pauli, S., Altintas, E., Singer, U., Merk, T., Uttner, I., ... Ludolph, A.C. (2012). Emotional adjustment in amyotrophic lateral sclerosis (ALS). Journal of Neurology, 259, 334-341. doi: 10.1007/s00415-011- 6191-x
34. Montali, L., Frigerio, A., Riva, P., & Invernizzi, P. (2011). "It's as if PBC didn't exist": The illness experience of women affected by Primary Biliary Cirrhosis (PBC). Psychology & Health, 26, 1429-1445. doi: 10.1080/08870446.2011.565876
35. Nettleton, S., Watt, I., O'Malley, L., & Duffey, P. (2005). Understanding the narratives of people who live with medically unexplained illness. Patient Education and Counseling, 56, 205-210. doi: 10.1016/j.pec.2004.02.010 (Pubitemid 40093819)
36. Penziner, E., Williams, J., Erwin, C., Bombard, Y., Wallis, A., Beglinger, L., ... Paulsen, J.S. (2008). Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease. American Journal of Medical Genetics Part B (Neuropsychiatric Genetics), 147B, 320-325. doi: 10.1002/ajmg.b.30600 (Pubitemid 351536795)
37. Price, V.E., Klaassen, R.J., Bolton-Maggs, P.H., Grainger, J.D., Curtis, C., Wakefield, C., ... Young, N.L. (2009). Measuring disease-specific quality of life in rare populations: A practical approach to cross-cultural translation. Health and Quality of Life Outcomes, 7, 92. Retrieved from http://www.hqlo.com/ content/7/1/92
38. Pulciani, S., Marsico, G., Agazio, E., Salvo, F., Salerno, P., Kodra, Y., ... Taruscio, D. (2008). Sharing experiences and expertises. Effective communication in rare diseases. Rapporti ISTISAN, 08, 152-153.
39. Rajmil, L., Perestelo-Pérez, L., & Herdman, M. (2010). Quality of life and rare diseases. Advances in Experimental Medicine and Biology, 686, 251-272. doi: 10.1007/978-90-481-9485-8-15
40. Ravert, R.D., Hancock, M.D., & Ingersoll, G.M. (2004). Online forum messages posted by adolescents with type I diabetes. Diabetes Educator, 30, 827-834. (Pubitemid 39421903)
41. Reasoner, T.L. (2010). Using participation in an online community to support living and coping with chronic disease: A narrative inquiry. Dissertation Abstracts International Section A: Humanities and, Social Sciences, 71(5-A), 1501.
42. Remuzzi, G., & Garrattini, S. (2008). Rare diseases: What's next? Lancet, 371, 1978-1979. doi: 10.1016/S0140-6736(08)60847-8 (Pubitemid 351799846)
43. Scheindlin, S. (2006). Rare diseases, orphan drugs, and orphaned patients. Molecular Interventions, 6, 186-191.
44. Schieppati, A., Henter, J.I., Daina, E., & Aperia, A. (2008). Why rare diseases are an important medical and social issue. Lancet, 371, 2039-2041. doi: 10.1016/S0140-6736(08)60872-7 (Pubitemid 351799861)
45. Schlander, M., & Beck, M. (2009). Expensive drugs for rare disorders: To treat or not to treat? The case of enzyme replacement therapy for mucopolysaccharidosis VI. Current Medical Research and Opinion, 25, 1285-1293. doi: 10.1185/03007990902892633
46. Solovieva, S., Santavirta, N., Santavirta, S., & Konttinen, Y.T. (2004). Assessing quality of life in individuals with hereditary blood coagulation disorders. Quality of Life Research, 13, 987-1000. doi: 10.1023/B:QURE.0000025587.97216.8a (Pubitemid 39005108)
47. Stevenson, D.A., & Carey, J.C. (2009). Health-related quality of life measures in genetic disorders: An outcome variable for consideration in clinical trials. American Journal of Medical Genetics Part C Seminars in Medical Genetics, 151C, 255-260.
48. Stone, S.D. (2007). Patient concerns posthaemorrhagic stroke: A study of the internet narratives of patients with ruptured arteriovenous malformation. Journal of Clinical Nursing, 16, 289-297. doi: 10.1111/j.1365-2702.2005.01490.x
49. Swift, T.L., & Dieppe, P.A. (2005). Using expert patients' narratives as an educational resource. Patient Education and Counseling, 57, 115-121. (Pubitemid 40431919)
50. Taruscio, D. (2009). Malattie rare e medicina narrative [Rare diseases and narrative medicine]. Rapporti ISTISAN, 09, 11-14.
51. Terpstra, S.J., de Witte, L.P., van der Horst, F.G.E.M., & Tilli, D.J.P. (1990). The role of a patient organisation in health care for the chronically ill and their famiglie. Second report: Living with a neuromuscular disease (I): An investigation under members of the Dutch Neuromuscular Diseases Association. Hoensbroek: Instituut voor Revalidatie-Vraagstukken.
52. Van Nispen, R.M.A., & Breuning, E. (2003). Rare diseases. A bibliography on health care and daily life. Utrecth: NIVEL.
53. Ville, I., & Khlat, M. (2007). Meaning and coherence of self and health. An approach based on narratives of life events. Social Science & Medicine, 64, 1001-1014. (Pubitemid 46098983)
54. Williams, L., Labonte, R., & O'Brien, M. (2003). Empowering social action through narratives of identity and culture. Health Promotion International, 18, 33-40. doi: 10.1093/heapro/18.1.33 (Pubitemid 36323468)
55. World Health Organization. (2000). Introducing the WHOQOL instruments. Retrieved from http://www.who.int/
56. Wykurz, G., & Kelly, D. (2002). Developing the role of patients as teachers. Literature review. BMJ: British Medical Journal, 325, 818-821. doi: 10.1136/bmj.325.7368.818 (Pubitemid 35177977)