Top

Quality of Life Research

Gepubliceerd in:

18-06-2019

Towards patients’ understanding of health-related quality of life—a mixed-method study in psoriasis and multiple sclerosis

Auteurs: Valerie Andrees, Joachim Westenhöfer, Christine Blome, Christoph Heesen, Matthias Augustin, Janine Topp

Gepubliceerd in: Quality of Life Research | Uitgave 10/2019

Abstract

Purpose

Patients’ individual understanding of health-related quality of life (HRQoL) varies widely, making the measurement of this complex and subjective construct challenging. Anchoring vignettes, i.e., descriptions of fictive patients may provide insights into patients’ individual questionnaire reference frames, assessment processes, and understanding of HRQoL. This study analyzes how patients assess HRQoL of vignettes.

Methods

This exploratory mixed-method study included 100 patients with a chronic disease (50 multiple sclerosis (MS); 50 psoriasis). Sixteen vignettes, two for each domain of the SF-12v2, were developed based on literature recommendations and pretested in a convenience sample of seven healthy individuals. Patients assessed their own HRQoL and HRQoL of the vignettes on the SF-12v2. In semi-structured interviews, they justified their assessments. We quantitatively analyzed associations of vignette assessments with individual characteristics using linear regression models and qualitatively analyzed assessment justifications.

Results

Patients’ age and disease were significant (p < 0.05) predictors for ten and seven vignette assessments, respectively. Older patients assessed vignettes being less extreme; patients diagnosed with MS rated them more positively. Overall, adjusted R² values ranged from 0.033 to 0.172. Qualitatively, most of the ratings were based on the evaluation of symptoms or impairments in daily life. Fewer participants ranked different dimensions of HRQoL in a personal hierarchy or assumed impairments beyond the vignette description.

Conclusions

The understanding of HRQoL may vary substantially and is associated with individual characteristics, individual assessment strategies, and probably other intrinsic factors as explained variance was quite low. Therefore, usage of generic instruments only allows for limited comparison across groups.

vorige artikel The role of dispositional mindfulness in a stress-health pathway among Parkinson’s disease patients and caregiving partners

volgende artikel Routine incorporation of longer-term patient-reported outcomes into a Dutch trauma registry

Alleen toegankelijk voor geautoriseerde gebruikers

Greenfield, J., Hudson, M., Vinet, E., Fortin, P. R., Bykerk, V., Pineau, C. A., et al. (2017). A comparison of health-related quality of life (HRQoL) across four systemic autoimmune rheumatic diseases (SARDs). PLoS ONE, 12(12), e0189840. https://doi.org/10.1371/journal.pone.0189840.CrossRefPubMedPubMedCentral

Lin, X.-J., Lin, I.-M., & Fan, S.-Y. (2013). Methodological issues in measuring health-related quality of life. Tzu Chi Medical Journal, 25(1), 8–12. https://doi.org/10.1016/j.tcmj.2012.09.002.CrossRef

Badia, X., & Herdman, M. (2001). The importance of health-related quality-of-life data in determining the value of drug therapy. Clinical Therapeutics, 01(23), 168–175. https://doi.org/10.1016/S0149-2918(01)80039-4.CrossRef

Ahmed, S., Berzon, R. A., Revicki, D. A., Lenderking, W. R., Moinpour, C. M., Basch, E., et al. (2012). The use of patient-reported outcomes (PRO) within comparative effectiveness research: Implications for clinical practice and health care policy. Medical Care, 12(50), 1060–1070. https://doi.org/10.1097/MLR.0b013e318268aaff.CrossRef

Sosnowski, R., Kulpa, M., Zietalewicz, U., Wolski, J. K., Nowakowski, R., Bakula, R., et al. (2017). Basic issues concerning health-related quality of life. Central European Journal of Urology, 70(2), 206–211. https://doi.org/10.5173/ceju.2017.923.CrossRefPubMedPubMedCentral

Crane, M., Rissel, C., Greaves, S., & Gebel, K. (2016). Correcting bias in self-rated quality of life: an application of anchoring vignettes and ordinal regression models to better understand QoL differences across commuting modes. Quality of Life Research, 25(2), 257–266. https://doi.org/10.1007/s11136-015-1090-8.CrossRefPubMed

Schneider, U., Pfarr, C., Schneider, B. S., & Ulrich, V. (2012). I feel good! Gender differences and reporting heterogeneity in self-assessed health. The European Journal of Health Economics, 13(3), 251–265. https://doi.org/10.1007/s10198-011-0301-7.CrossRefPubMed

Etilé, F., & Milcent, C. (2006). Income-related reporting heterogeneity in self-assessed health: Evidence from France. Health Economics, 15(9), 965–981. https://doi.org/10.1002/hec.1164.CrossRefPubMed

Bago d’Uva, T., van Doorslaer, E., Lindeboom, M., & O’Donnell, O. (2008). Does reporting heterogeneity bias the measurement of health disparities? Health Economics, 17(3), 351–375. https://doi.org/10.1002/hec.1269.CrossRefPubMed

10.

King, G., Murray, C. J., Salomon, J. A., & Tandon, A. (2004). Enhancing the validity and cross-cultural comparability of measurement in survey research. American Political Science Review, 98(01), 191–207. https://doi.org/10.1017/S000305540400108X.CrossRef

11.

Knott, R. J., Lorgelly, P. K., Black, N., & Hollingsworth, B. (2017). Differential item functioning in quality of life measurement: An analysis using anchoring vignettes. Social Science and Medicine, 190, 247–255. https://doi.org/10.1016/j.socscimed.2017.08.033.CrossRefPubMed

12.

Abdin, E., Subramaniam, M., Picco, L., Pang, S., Vaingankar, J. A., Shahwan, S., et al. (2017). The importance of considering differential item functioning in investigating the impact of chronic conditions on health-related quality of life in a multi-ethnic Asian population. Quality of Life Research, 26(4), 823–834. https://doi.org/10.1007/s11136-016-1418-z.CrossRefPubMed

13.

Buchcik J, Westenhöfer J, Fleming M, Martin CR (2017) Health-related quality of life (HRQoL) among elderly Turkish and polish migrants and German Natives: The role of age, gender, income, discrimination and social support. Discrimination and social support, people’s movements in the 21st century—risks, challenges and benefits, Dr. Ingrid Muenstermann (Ed.). InTech. https://doi.org/10.5772/66931.

14.

O’Doherty, M. G., French, D., Steptoe, A., & Kee, F. (2017). Social capital, deprivation and self-rated health: Does reporting heterogeneity play a role? Results from the English Longitudinal Study of Ageing. Social Science and Medicine, 179, 191–200. https://doi.org/10.1016/j.socscimed.2017.03.006.CrossRefPubMed

15.

Hanandita, W., & Tampubolon, G. (2016). Does reporting behaviour bias the measurement of social inequalities in self-rated health in Indonesia? An anchoring vignette analysis. Quality of Life Research, 25(5), 1137–1149. https://doi.org/10.1007/s11136-015-1152-y.CrossRefPubMed

16.

Au, N., & Lorgelly, P. K. (2014). Anchoring vignettes for health comparisons: an analysis of response consistency. Quality of Life Research, 23(6), 1721–1731. https://doi.org/10.1007/s11136-013-0615-2.CrossRefPubMed

17.

Angelini, V., Cavapozzi, D., Corazzini, L., & Paccagnella, O. (2014). Do Danes and Italians rate life satisfaction in the same way? Using vignettes to correct for individual-specific scale biases. Oxford Bulletin of Economics and Statistics, 76(5), 643–666. https://doi.org/10.1111/obes.12039.CrossRef

18.

Grol-Prokopczyk, H., Freese, J., & Hauser, R. M. (2011). Using anchoring vignettes to assess group differences in general self-rated health. Journal of Health and Social Behavior, 52(2), 246–261. https://doi.org/10.1177/0022146510396713.CrossRefPubMedPubMedCentral

19.

Charters, E. (2003). The use of think-aloud methods in qualitative research an introduction to think-aloud methods. Brock Education Journal. https://doi.org/10.26522/brocked.v12i2.38.CrossRef

20.

Jenkinson, C., Layte, R., Jenkinson, D., Lawrence, K., Petersen, S., Paice, C., et al. (1997). A shorter form health survey: can the SF-12 replicate results from the SF-36 in longitudinal studies? Journal of Public Health Medicine, 19(2), 179–186.CrossRef

21.

Gandek, B., Ware, J. E., Aaronson, N. K., Apolone, G., Bjorner, J. B., Brazier, J. E., et al. (1998). Cross-validation of Item selection and scoring for the SF-12 health survey in nine countries: Results from the IQOLA project. Journal Clinical Epidemiology, 51(11), 1171–1178.CrossRef

22.

Mariush, M. E. (2012). User’s manual for the SF-12v2 health survey (3rd ed.). Lincoln: QualityMetric Incorporated.

23.

Kuckartz, U. (2017). Datenanalyse in der mixed-methods-Forschung. Kölner Zeitschrift für Soziologie und Sozialpsychologie, 69(S2), 157–183. https://doi.org/10.1007/s11577-017-0456-z.CrossRef

24.

Malterud, K. (2001). Qualitative research: Standards, challenges, and guidelines. The Lancet, 358(9280), 483–488. https://doi.org/10.1016/S0140-6736(01)05627-6.CrossRef

25.

Teddlie, C., & Yu, F. (2007). Mixed methods sampling: A typology with examples. Journal of Mixed Methods Research, 1(1), 77–100. https://doi.org/10.1177/1558689806292430.CrossRef

26.

Bradley, E. H., Curry, L. A., & Devers, K. J. (2007). Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Services Research, 42(4), 1758–1772. https://doi.org/10.1111/j.1475-6773.2006.00684.x.CrossRefPubMedPubMedCentral

27.

Curry, L. A., Nembhard, I. M., & Bradley, E. H. (2009). Qualitative and mixed methods provide unique contributions to outcomes research. Circulation, 119(10), 1442–1452. https://doi.org/10.1161/CIRCULATIONAHA.107.742775.CrossRefPubMed

28.

Chan, A., Malhotra, C., Do, Y. K., Malhotra, R., & Østbye, T. (2011). Self reported pain severity among multiethnic older Singaporeans: Does adjusting for reporting heterogeneity matter? European Journal of Pain, 15(10), 1094–1099. https://doi.org/10.1016/j.ejpain.2011.05.006.CrossRefPubMed

29.

Hirve, S., Verdes, E., Lele, P., Juvekar, S., Blomstedt, Y., Tollman, S., et al. (2014). Evaluating reporting heterogeneity in self-rated health Among adults aged 50 years and above in India. Journal of Aging and Health, 26(6), 1015–1031. https://doi.org/10.1177/0898264314535634.CrossRefPubMed

30.

Röcke, C., Li, S.-C., & Smith, J. (2009). Intraindividual variability in positive and negative affect over 45 days: Do older adults fluctuate less than young adults? Psychology and Aging, 24(4), 863–878. https://doi.org/10.1037/a0016276.CrossRefPubMed

31.

Carstensen, L. L., Turan, B., Scheibe, S., Ram, N., Ersner-Hershfield, H., Samanez-Larkin, G. R., et al. (2011). Emotional experience improves with age: Evidence based on over 10 years of experience sampling. Psychology and Aging, 26(1), 21–33. https://doi.org/10.1037/a0021285.CrossRefPubMedPubMedCentral

32.

Global Burden of Disease Collaborative Network (2017). Global Burden of Disease Study 2016 (GBD 2016) Disability Weights.

33.

Pereira-Morales, A. J., Adan, A., Lopez-Leon, S., & Forero, D. A. (2018). Personality traits and health-related quality of life: The mediator role of coping strategies and psychological distress. Annals of General Psychiatry, 17, 25. https://doi.org/10.1186/s12991-018-0196-0.CrossRefPubMedPubMedCentral

Titel: Towards patients’ understanding of health-related quality of life—a mixed-method study in psoriasis and multiple sclerosis
Auteurs: Valerie Andrees
Joachim Westenhöfer
Christine Blome
Christoph Heesen
Matthias Augustin
Janine Topp
Publicatiedatum: 18-06-2019
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 10/2019
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-019-02227-4

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusions

Log in om toegang te krijgen

Andere artikelen Uitgave 10/2019

Measurement properties of PROMIS short forms for pain and function in orthopedic foot and ankle surgery patients

Introduction to “Advancing quality‑of‑life research by deepening our understanding of response shift”

Evaluation of the responsiveness of Short Form-12 Health Survey version 2 (SF-12v2) in Chinese patients with hypertension in primary care

A systematic scoping review of oral health models

Conceptual and methodological considerations regarding appraisal and response shift

Health-related quality of life among adult HIV positive patients: assessing comprehensive themes and interrelated associations