Skip to main content
Mijn bibliotheek
Shop
Nieuws Boeken Tijdschriften Toetsvragen Web-tv Video Audio
Tips voor Mijn BSL
Inloggen
Top
Quality of Life Research
Gepubliceerd in:

01-08-2008

Beyond standard quality of life measures: the subjective experiences of living with inflammatory bowel disease

Auteurs: Barat J. Wolfe, Fuschia M. Sirois

Gepubliceerd in: Quality of Life Research | Uitgave 6/2008

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

Abstract

Introduction

In order to facilitate our understanding of health-related quality of life (HRQoL) for inflammatory bowel disease (IBD) patients, it is critical to explore their subjective experiences with the disease. Research has suggested that current modes of assessing HRQoL (i.e., generic and disease-specific measures) may not fully represent all dimensions of patients’ HRQoL. The purpose of this study was to examine IBD patients’ subjective experiences of the daily impact of IBD, and categorize dimensions of their HRQoL affected by IBD, as identified by the patients themselves.

Methods

Two hundred and eighty-two patients with IBD provided answers to the qualitative question “How has IBD affected your daily activities?” A content analysis using NVivo 2.0 was conducted on the participants’ responses to this question to reveal dimensions of their HRQoL.

Results

The analysis yielded six dimensions and several subdimensions of HRQoL, including physical (systemic functioning, daily functioning, energy/vitality, pain), emotional, social, cognitive (functioning, attending to disease), self-regulation (taking control, loss of control, and neutral), and practical functioning.

Discussion

These results reflect previous findings, but also reveal several dimensions of HRQoL not included in current measures of HRQoL for IBD patients (i.e., cognitive, self-regulation, and practical). The implications of these findings for future measurement of HRQoL and research with IBD patients are discussed.
vorige artikel Persistence of unmet need for care among people with systemic lupus erythematosus: a longitudinal study
volgende artikel Impact of comorbid diabetes on quality of life and perception of angina pain in people with angina registered with general practitioners in the UK
Literatuur
1.
Hall, N. J., Rubin, G. P., Dougall, A., Hungin, A. P. S., & Neeley, J. (2005). The fight for ‘health-related normality’: A qualitative study of the experiences of individuals living with established inflammatory bowel disease (IBD). Journal of Health Psychology, 10, 443–455. doi:10.​1177/​1359105305051433​.PubMedCrossRef
2.
3.
Casati, J., Toner, B. B., De Rooy, E. C., Drossman, D. A., & Maunder, R. G. (2000). Concerns of patients with inflammatory bowel disease: A review of emerging themes. Digestive Diseases and Sciences, 45, 26–31. doi:10.​1023/​A:​1005492806777.PubMedCrossRef
4.
Nightingale, A. (2006). Treatment and management of inflammatory bowel disease: Allison Nightingale discusses diagnosis, treatment management of inflammatory bowel disease and highlights the role of the specialist nurse (disease/disorder review). Primary Health Care, 16, 27–32.
5.
6.
7.
Drossman, D. A., Patrick, D. L., Mitchell, C. M., Zagami, E. A., & Appelbaum, M. I. (1989). Health-related quality of life in inflammatory bowel disease. Digestive Diseases and Sciences, 34, 1379–1386. doi:10.​1007/​BF01538073.PubMedCrossRef
8.
Farmer, R. G., Easley, K. A., & Farmer, J. M. (1992). Quality of life assessment by patients with inflammatory bowel disease. Cleveland Clinic Journal of Medicine, 59, 35–42.PubMed
9.
Guyatt, G., Mitchell, A., Irvine, E. J., Singer, J., Williams, N., Goodacre, R., et al. (1989). A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology, 96, 804–810.PubMed
10.
11.
12.
Casellas, F., Lopez-Vivancos, J., Badia, X., Vilaseca, J., & Malagelada, J.-R. (2001). Influence of inflammatory bowel disease on different dimensions of quality of life. European Journal of Gastroenterology and Hepatology, 13, 567–572. doi:10.​1097/​00042737-200105000-00017.PubMedCrossRef
13.
Palm, O., Bernklev, T., Moum, B., & Gran, J. T. (2005). Non-inflammatory joint pain in patients with inflammatory bowel disease is prevalent and has a significant impact on health related quality of life. Journal of Rheumatology, 32, 1755–1759.PubMed
14.
15.
Drummond, M. F. (1987). Resource allocation decisions in health care: A role for quality of life assessments? Journal of Chronic Diseases, 40, 605–616.PubMedCrossRef
16.
17.
18.
Drossman, D. A. (1999). Psychosocial factors in ulcerative colitis and Crohn’s disease. In: J. B. Kirsner (Ed.), Inflammatory bowel disease (5th ed., pp. 342–357). Philadelphia: W. B. Saunders Company.
19.
Lopez Blanco, B., Moreno-Jimenez, B., Devesa Mugica, J. M., & Rodriguez Munoz, A. (2005). Relationship between socio-demographic and clinical variables, and health-related quality of life in patients with inflammatory bowel disease. Revista Española DE Enfermedades Digestivas, 97, 887–898.PubMedCrossRef
20.
21.
22.
Osoba, D., Hsu, M. A., Copley-Merriman, C., Coombs, J., Johnson, F. R., Hauber, B., et al. (2006). Stated preferences of patients with cancer for health-related quality-of-life (HRQOL) domains during treatment. Quality of Life Research, 15, 273–283. doi:10.​1007/​s11136-005-0580-5.PubMedCrossRef
23.
24.
25.
Salaffi, F., & Stancati, A. (2004). Disability and quality of life of patients with rheumatoid arthritis: assessment and perspectives. Reumatismo, 56, 87–106.PubMed
26.
Loonen, H. J., Grootenhuis, M. A., Last, B. F., Koopman, H. M., & Derkx, H. H. F. (2002). Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire. Acta Paediatrica, 91, 348–354.PubMedCrossRef
27.
Drossman, D. A., Leserman, J., Li, Z. M., Mitchell, C. M., Zagami, E. A., & Patrick, D. L. (1991). The rating form of IBD patient concerns: A new measure of health status. Psychosomatic Medicine, 53, 6701–6712.
28.
29.
Thompson, S. C., Sobolew-Shubin, A., Galbraith, M. E., Schwankovsky, L., & Cruzen, D., M. (1993). Maintaining perceptions of control: Finding perceived control in low-control circumstances. Journal of Personality and Social Psychology, 64, 293–304. doi:10.​1037/​0022-3514.​64.​2.​293.PubMedCrossRef
30.
Sirois, F. M., & Wolfe, B. (2007). A continuum of control: Implications for quality of life in patients with inflammatory bowel disease (IBD). International Society for Quality of Life Research Meeting Abstracts. Quality of Life Research supplement, vol. A-81. http://​www.​isoqol.​org/​2007mtgabstracts​.​pdf.
31.
Pennebaker, J. (2007). Editorial: Current issues and new directions in psychology and health: Listening to what people say—the value of narrative and computational linguistics in health psychology. Psychology and Health, 22, 631–635. doi:10.​1080/​0887044070141492​0.CrossRef
32.
33.
34.
Walker, E. A., Roy-Byrne, P. P., Katon, W. J., Li, L., Amos, D., & Jiranek, G. (1990). Psychiatric illness and irritable bowel syndrome: a comparison with inflammatory bowel disease. American Journal of Psychiatry, 147, 1656–1661.PubMed
35.
Bernard, H. R. (2000). Social research methods: Qualitative and quantitative approaches. Thousand Oaks: Sage.
36.
Schaefer, D. R., & Dillman, D. A. (1998). Development of a standard e-mail methodology: Results of an experiment. Public Opinion Quarterly, 62, 378–397. doi:10.​1086/​297851.CrossRef
37.
Locke, S. D., & Gilbert, B. O. (1995). Method of psychological assessment, self disclosure, and experiential differences: A study of computer, questionnaire and interview assessment formats. Journal of Social Behavior and Personality, 10, 255–263.
38.
Kiernan, N. E., Kiernan, M., Oyler, M. A., & Gilles, C. (2005). Is a web survey as effective as a mail survey? A field experiment among computer users. American Journal of Evaluation, 26, 245–252. doi:10.​1177/​1098214005275826​.CrossRef
39.
Joinson, A. N. (2001). Self-disclosure in computer-mediated communication: The role of self-awareness and visual anonymity. European Journal of Social Psychology, 31, 177–192. doi:10.​1002/​ejsp.​36.CrossRef
40.
Soetikno, R. M., Mrad, R., Pao, V., & Lenert, L. A. (1997). Quality-of-life research on the Internet: feasibility and potential biases in patients with ulcerative colitis. Journal of the American Medical Informatics Association, 4, 426–435.PubMed
41.
42.
43.
Metagegevens
Titel
Beyond standard quality of life measures: the subjective experiences of living with inflammatory bowel disease
Auteurs
Barat J. Wolfe
Fuschia M. Sirois
Publicatiedatum
01-08-2008
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 6/2008
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-008-9362-1

Andere artikelen Uitgave 6/2008

Quality of life as a prognostic factor of overall survival in patients with advanced hepatocellular carcinoma: results from two French clinical trials

Development and validation of the convalescence and recovery evaluation (CARE) for measuring quality of life after surgery

Letter to the Editor

  • Open Access

Life satisfaction in a sample of empty-nest elderly: a survey in the rural area of a mountainous county in China

Separating gains and losses in health when calculating the minimum important difference for mapped utility measures

Comparison of perceived oral health in patients with temporomandibular disorders and dental anxiety using oral health-related quality of life profiles