Hostname: page-component-8448b6f56d-wq2xx Total loading time: 0 Render date: 2024-04-19T15:14:52.072Z Has data issue: false hasContentIssue false
  • English
  • Français

Perceptions of Health Status in Multiple Sclerosis Patients and Their Doctors

Published online by Cambridge University Press:  23 September 2014

Marcelo Kremenchutzky  and
Len Walt
Marcelo Kremenchutzky*
Affiliation:
Schulich School of Medicine, University of Western Ontario, London
Len Walt
Affiliation:
Biogen Idec Canada Inc., Mississauga, Ontario, Canada
*
Marcelo Kremenchutzky, Neurology, Schulich School of Medicine, University of Western Ontario, 339 Windermere Road, London, Ontario, N6A 5A5, Canada. Email: marcelo.kremenchutzky@lhsc.on.ca.
Rights & Permissions [Opens in a new window]

Abstract

Core share and HTML view are not available for this content. However, as you have access to this content, a full PDF is available via the ‘Save PDF’ action button.
Objective:

To compare neurologist and patient perceptions of multiple sclerosis (MS)-related health status.

Methods:

MS patients (n=99) were recruited from six sites in Canada. Following a consultation with their neurologist, patients estimated their relapse frequency, rated their general health and quality of life (QoL), reviewed descriptions of eight health domains and selected the three most important, and completed a utility assessment using the standard gamble (SG). Concurrently, neurologists independently used the same instruments to rate their patients' health status. Assessments were compared on the basis of paired mean values of both groups and the degree of exact agreement quantified by intraclass coefficient (ICC) and kappa analyses, which yield values of 1.0 with 100% agreement.

Results:

There were significant differences (p<0.001) between patient and neurologist ratings for relapses in the last year (0.86 vs. 0.4, respectively), QoL (61.2 vs. 69.7 (maximum score = 100) and utility (0.864 vs. 0.971); ICC analysis revealed moderate to poor levels of agreement (0.56 for QoL to 0.03 for SG). There was little concordance in identification of important health domain and the only significant associations were in bodily pain and social functioning (kappa statistic = 0.24, p = 0.026 for both). Neurologists identified physical functioning domains as important, while patients placed more emphasis on mental health domains.

Conclusions:

Discrepancies between neurologist and patient perceptions of MS were observed. The study identifies a need to educate neurologists on the recognition of MS health domains that are important in the definition of patient QoL.

Résumé:

Résumé:Objectif:

Le but de l'étude était de comparer la perception de l'état de santé en relation à la sclérose en plaques (SP) qu'ont les neurologues et les patients.

Méthode:

Des patients atteints de SP (n = 99) ont été recrutés dans six centres au Canada. À la suite d'une consultation avec leur neurologue, les patients estimaient la fréquence de leurs rechutes, évaluaient leur santé générale et leur qualité de vie (QV), révisaient des descriptions de 8 domaines de santé et choisissaient les trois plus importants pour eux et complétaient une évaluation de l'utilité par la méthode du pari standard (PS). Les neurologues utilisaient parallèlement les mêmes instruments pour évaluer l'état de santé de leurs patients. Les évaluations ont été comparées quant aux valeurs moyennes pairées des deux groupes et le degré de concordance exacte a été quantifié au moyen du coefficient intraclasse (CIC) et de l'analyse kappa, dont la valeur est de 1,0 lorsque la concordance est de 100%.

Résultats:

Il existait des différences significatives (p < 0,001) entre l'évaluation faite par le patient et celle faite par le neurologue pour le nombre de rechutes au cours de la dernière année (0,86 contre 0,4 respectivement), la QV (61,2 contre 69,7; score maximum = 100) et l'utilité (0,864 par rapport à 0.971). L'analyse CIC a montré un niveau de modéré à faible pour la concordance (0,56 pour la QV; 0,03 pour le PS). Il y avait peu de concordance dans l'identification des domaines de santé importants et les seules associations significatives étaient pour la douleur physique et le fonctionnement social (statistique kappa = 0,24, p = 0,026 pour les deux). Les neurologues ont identifié les domaines de fonctionnement physique comme étant importants alors que les patients mettaient plus d'emphase sur les domaines de santé mentale.

Conclusions:

Nous avons observé des discordances entre la perception de la SP qu'ont les neurologues par rapport à celle de leurs patients. Cette étude indique un besoin d'éducation chez les neurologues sur la reconnaissance des domaines de santé dans la SP qui sont importants dans la définition de la QV chez les patients.

Type
Original Article
Information
Canadian Journal of Neurological Sciences , Volume 40 , Issue 2 , March 2013 , pp. 210 - 218
Copyright
Copyright © The Canadian Journal of Neurological 2013

References

1. Fowler, FJ, Levin, CA, Sepucha, KR. Informing and involving patients to improve the quality of medical decisions. Health Aff. 2011;30(4):699–706.CrossRefGoogle ScholarPubMed
2. Suarez-Almazor, ME, Conner-Spady, B, Kendall, CJ, Russell, AS, Skeith, K. Lack of congruence in the ratings of patients’ health status by patients and their physicians. Med Decis Making. 2001;21(2):113–21.Google Scholar
3. Rothwell, PM, McDowell, Z, Wong, CK, Dorman, PJ. Doctors and patients don’t agree: cross sectional study of patients’ and doctors’ perceptions and assessments of disability in multiple sclerosis. BMJ. 1997;314(7094):1580–3.CrossRefGoogle ScholarPubMed
4. Heesen, C, Solari, A, Giordano, A, Kasper, J, Kopke, S. Decisions on multiple sclerosis immunotherapy: new treatment complexities urge patient engagement. J Neurol Sci. 2011;306(1–2):192–7.Google Scholar
5. Janse, AJ, Gemke, RJBJ, Uiterwaal, CSPM, van der Tweel, I, Kimpen, JLL, Sinnema, G. Quality of life: patients and doctors don’t always agree: a meta-analysis. J Clin Epidemiol. 2004;57(7):653–61.CrossRefGoogle ScholarPubMed
6. Oliva, EN, Nobile, F, Alimena, G, et al. Quality of life in elderly patients with acute myeloid leukemia: patients may be more accurate than physicians. Haematologica. 2011;96(5):696–702.Google Scholar
7. Sonn, GA, Sadetsky, N, Presti, JC, Litwin, MS. Differing perceptions of quality of life in patients with prostate cancer and their doctors. J Urol. 2009;182(5):2296–302.Google Scholar
8. Johnson, FR, Ozdemir, S, Mansfield, C, et al. Crohn’s disease patients’ risk-benefit preferences: serious adverse event risks versus treatment efficacy. Gastroenterology. 2007;133(3):769–79.CrossRefGoogle ScholarPubMed
9. Mantyselka, P, Kumpusalo, E, Ahonen, R, Takala, J. Patients’ versus general practitioners’ assessments of pain intensity in primary care patients with non-cancer pain. Br J Gen Pract. 2001;51 (473):995–7.Google Scholar
10. Wilson, KA, Dowling, AJ, Abdolell, M, Tannock, IF. Perception of quality of life by patients, partners and treating physicians. Qual Life Res. 2000;9(9):1041–52.CrossRefGoogle ScholarPubMed
11. Sherbourne, CD, Sturm, R, Wells, KB. What outcomes matter to patients? J Gen Intern Med. 1999;14(6):357–63.Google Scholar
12. Heesen, C, Kleiter, I, Nguyen, F, et al. Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists. Mult Scler 2010;16(12):1507–12.Google Scholar
13. Spain, LA, Tubridy, N, Kilpatrick, TJ, Adams, SJ, Holmes, ACN. Illness perception and health-related quality of life in multiple sclerosis. Acta Neurol Scand. 2007;116(5):293–9.CrossRefGoogle ScholarPubMed
14. Forbes, A, While, A, Taylor, M. What people with multiple sclerosis perceive to be important to meeting their needs. J Adv Nursing. 2007;58(1):11–22.Google Scholar
15. Miller, DM, Allen, R. Quality of life in multiple sclerosis: Determinants, measurements, and use in clinical practice. Curr Neurol Rep. 2010;10(5):397–406.Google Scholar
16. Yeh, EA, Weinstock-Guttman, B. Fingolimod: an oral disease-modifying therapy for relapsing multiple sclerosis. Adv Ther. 2011;28(4):270–8.CrossRefGoogle ScholarPubMed
17. Kieseier, BC, Stuve, O. A critical appraisal of treatment decisions in multiple sclerosis - old versus new. Nature Rev Neurol. 2011;7 (5):255–62.Google Scholar
18. Johnson, FR, Van Houtven, G, Ozdemir, S, et al. Multiple sclerosis patients’ benefit-risk preferences: serious adverse event risks versus treatment efficacy. J Neurol. 2009;256(4):554–62.Google Scholar
19. Heesen, C, Kasper, J, Kopke, S, Richter, T, Segal, J, Muhlhauser, I. Informed shared decision making in multiple sclerosis — inevitable or impossible? J Neurol Sci. 2007;259(1–2):109–17.Google Scholar
20. Heesen, C, Kopke, S, Richter, T, Kasper, J. Shared decision making and self-management in multiple sclerosis - a consequence of evidence. J Neurol. 2007;254 (Suppl 2):II116–21.CrossRefGoogle ScholarPubMed
21. Mendel, R, Traut-Mattausch, E, Frey, D, et al. Do physicians’ recommendations pull patients away from their preferred treatment options? Health Expect. 2012;15(1):23–31.CrossRefGoogle ScholarPubMed
22. Drummond, MF, Sculpher, MJ, Torrance, GW, O’Brien BJ, Stoddart GL. Methods for the economic evaluation of health care programmes. 3rd ed. New York: Oxford University Press; 2005.CrossRefGoogle Scholar
23. Ware, JE, Snow, KK, Kosinski, M, Gandek, B. SF-36 Health Survey: Manual and interpretation guide. Boston: The Health Institute, New England Medical Center, 1993.Google Scholar
24. Vickrey, BG, Hays, RD, Harooni, R, Myers, LW, Ellison, GW. A health-related quality of life measure for multiple sclerosis. Qual Life Res. 1995;4(3):187–206.Google Scholar
25. Benito-Leon, J, Manuel Morales, J, Rivera-Navarro, J, Mitchell, AJ. A review about the impact of multiple sclerosis on health-related quality of life. Disab Rehab. 2003;25(23):1291–303.Google Scholar
26. Eisen, GM, Locke, R, Provenzale, D. Health-related quality of life: A primer for gastroenterologists. Am J Gastroenterol. 1999;94(8):2017–21.CrossRefGoogle ScholarPubMed
27. Krokavcova, M, Van Dijk, JP, Nagyova, I, et al. Perceived health status as measured by the SF-36 in patients with multiple sclerosis: a review. Scand J Caring Sci. 2009;23(3):529–38.Google Scholar
28. Laugsand, EA, Sprangers, MAG, Bjordal, K, Skorpen, F, Kaasa, S, Klepstad, P. Health care providers underestimate symptom intensities of cancer patients: A multicenter European study. Health Qual Life Outcomes. 2010;8:104.Google Scholar
29. Lee, J, Koh, D, Ong, CN. Statistical evaluation of agreement between two methods for measuring a quantitative variable. Comput Biol Med. 1989;19(1):61–70.CrossRefGoogle ScholarPubMed
30. Landis, JR, Koch, GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33(1):159–74.Google Scholar
31. Viera, AJ, Garrett, JM. Understanding interobserver agreement: the kappa statistic. Fam Med. 2005;37(5):360–3.Google Scholar
32. Murri, R, Ammassari, A, Trotta, MP, et al. Patient-reported and physician-estimated adherence to HAART. J Gen Intern Med. 2004;19(11):1104–10.Google Scholar
33. Byrt, T, Bishop, J, Carlin, JB. Bias, prevalence and kappa. J Clin Epidemiol. 1993;46(5):423–9.Google Scholar
34. van Asch, P. Impact of mobility impairment in multiple sclerosis 2 — patients’ perspectives. Europ Neurolog Rev. 2011;6(2):115–20.CrossRefGoogle Scholar
35. Nortvedt, MW, Riise, T. The use of quality of life measures in multiple sclerosis research. Mult Scler. 2003;9(1):63–72.Google Scholar
36. Fernandez, O, Baumstarck-Barrau, K, Simeoni, M-C, Auquier, P and the MusiQoL study group. Patient characteristics and determinants of quality of life in an international population with multiple sclerosis: Assessment using the MusiQoL and SF-36 questionnaires. Mult Scler. 2011;17(10):1238–49.Google Scholar
37. Muhlbacher, AC, Nubling, M. Analysis of physicians’ perspectives versus patients’ preferences: direct assessment and discrete choice experiments in the therapy of multiple myeloma. Eur J Health Econ. 2011;12(3):193–203.CrossRefGoogle ScholarPubMed
38. Melville, JL, Miller, EA, Fialkow, MF, Lentz, GM, Miller, JL, Fenner, DE. Relationship between patient report and physician assessment of urinary incontinence severity. Am J Obstet Gynecol. 2003;189(1):76–80.Google Scholar