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Validation of a Quality-of-Life Questionnaire for Patients with Pituitary Adenoma

Published online by Cambridge University Press:  02 December 2014

Peter Kan  and
Michael Cusimano
Peter Kan
Affiliation:
Division of Neurosurgery, St. Michael's Hospital, and the University of Toronto, Toronto, ON, Canada
Michael Cusimano*
Affiliation:
Division of Neurosurgery, St. Michael's Hospital, and the University of Toronto, Toronto, ON, Canada
*
Division of Neurosurgery, St. Michael’s Hospital, University of Toronto, 2004 - 38 Shuter Street, Toronto, Ontario, M5B 1A6, Canada
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Abstract:

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Background:

The purpose of this study was to develop and validate a self-administered questionnaire to measure the health-related quality of life of patients with pituitary adenoma.

Methods:

A patient-centred iterative process, involving a literature review and focus group interviews with 84 patients, was used to develop a preliminary 106-item questionnaire and to validate it. The final questionnaire comprised the 30 most important items chosen by 20 patients and 17 items considered important by health care professionals. For assessment of its validity and reliability, 55 patients were asked to complete the final questionnaire, RAND-36, FACT-G/FACT-Br, and Karnofsky Performance Scale (KPS). Concurrent validity of the results of our questionnaire with those of the other instruments was assessed with Pearson correlation coefficients. Known-group validity for the scores of extreme groups was assessed with a Student's t test. Test-retest reliability was determined with Pearson correlation coefficients and a Student's t test for two sets of scores obtained one month apart.

Results:

Forty-seven (85.5%) of the 55 questionnaires were completed. Our questionnaire was well correlated with the RAND-36, the FACT-Br, the FACT-G, and the KPS in the general health domain, but not with the KPS overall. Extreme groups (n=20) were significantly different. Test-retest reliability (n=24) was 0.88, and scores one month apart were not significantly different.

Conclusion:

Our patient-centred health-related quality of life questionnaire developed for patients with pituitary adenoma had good validity and reliability. This questionnaire could be used as a patient-centred outcome measure in clinical trials and for assessment of disease progression.

Résumé

RÉSUMÉContexte:

Le but de cette étude était de développer et de valider un questionnaire autoadministré pour mesurer la qualité de vie reliée à la santé chez les patients porteurs d'un adénome pituitaire.

Méthodes:

Un processus itératif centré sur le patient, comportant une revue de littérature et des entrevues de groupe échantillon de 84 patients a été utilisé pour développer un questionnaire préliminaire de 106 items et pour le valider. Le questionnaire final inclut les 30 items les plus importants choisis par 20 patients et 17 items considérés importants par des professionnels de la santé. Pour évaluer sa validité et sa fiabilité, on a demandé à 55 patients de compléter le questionnaire final, le RAND 36, le FACT-G/FACT-Br et l'échelle de Karnofsky (ÉK). La validité des résultats de notre questionnaire par rapport à celle des autres instruments a été évaluée au moyen du coefficient de corrélation de Pearson. La validité du groupe connu pour les scores de groupes extrêmes a été évaluée par un test t de Student. La fiabilité test-retest a été déterminée au moyen de coefficients de corrélation de Pearson et du test t de Student pour deux séries de scores obtenus à un mois d'intervalle.

Résultats:

Quarante-sept (85,5%) des 55 questionnaires ont été complétés. Il existait une bonne corrélation entre notre questionnaire et le RAND 36, le FACT-Br, le FACT-G et l'ÉK dans le domaine de la santé générale, mais pas pour l'ensemble de l'ÉK. Les groupes extrêmes (n = 20) étaient significativement différents. La fiabilité test-retest (n = 24) était de 0,88 et les scores à un mois d'intervalle n'étaient pas significativement différents.

Conclusion:

Le questionnaire sur la qualité de vie reliée à la santé, centré sur le patient, que nous avons élaboré pour les patients atteints d'adénome pituitaire, avait une bonne validité et une bonne fiabilité. Ce questionnaire pourrait être utilisé comme mesure des résultats centrée sur le patient dans les essais cliniques et pour l'évaluation de la progression de la maladie.

Type
Original Article
Information
Canadian Journal of Neurological Sciences , Volume 33 , Issue 1 , February 2006 , pp. 80 - 85
Copyright
Copyright © The Canadian Journal of Neurological 2006

References

1. Greenberg, MS. Pituitary adenoma. Handbook of Neurosurgery. 4thed. Lakeland: Greenberg Graphics; 1997. p.272.Google Scholar
2. Ahmed, S, Elsheikh, M, Stratton, IM, et al. Outcome oftransphenoidal surgery for acromegaly and its relationship to surgical experience. Clin Endocrinol (Oxf). 1999; 50: 561–7.Google Scholar
3. Ezzat, S. Living with acromegaly. Endocrinol Metab Clin North Am. 1992; 21: 753–60.Google Scholar
4. Jonsson, B, Nilsson, B. The impact of pituitary adenoma onmorbidity. Increased sick leave and disability retirement in a cross-sectional analysis of Swedish national data. Pharmacoeconomics. 2000; 18: 73–81.CrossRefGoogle Scholar
5. Cella, DF, Cherin, EA. Quality of life during and after cancertreatment. Compr Ther. 1988; 14: 69–75.Google Scholar
6. Shumaker, SA, Anderson, RT, Czajkowski, SM. Psychological testsand scales. Quality of assessments in clinical trials. New York: Raven Press; 1990. p.95–113.Google Scholar
7. Schipper, H. Guidelines and caveats for quality of life measurementin clinical practice and research. Oncology (Huntingt). 1990; 4: 51–7; discussion 70.Google Scholar
8. Burman, P, Deijen, JB. Quality of life and cognitive function inpatients with pituitary insufficiency. Psychother Psychosom. 1998; 67: 154–67.Google Scholar
9. Page, RC, Hammersley, MS, Burke, CW, Wass, JA. An account of thequality of life of patients after treatment for non-functioning pituitary tumours. Clin Endocrinol (Oxf). 1997; 46: 401–6.Google Scholar
10. Hutchinson, TA, Boyd, NF, Feinstein, AR, et al. Scientific problemsin clinical scales, as demonstrated in the Karnofsky index of performance status. J Chronic Dis. 1979; 32: 661–6.Google Scholar
11. Cronin, L, Guyatt, G, Griffith, L, et al. Development of a health-related quality-of-life questionnaire (PCOSQ) for women with polycystic ovary syndrome (PCOS). J Clin Endocrinol Metab. 1998; 83: 1976–87.Google Scholar
12. Osoba, D. Measuring the effect of cancer on quality of life. Effect of Cancer on Quality of Life. Boca Raton: CRC Press, 1991: 36.Google Scholar
13. Hays, RD, Sherbourne, CD, Mazel, RM. The RAND 36-Item Health Survey 1.0. Health Econ. 1993; 2: 217–27.Google Scholar
14. Weitzner, MA, Meyers, CA, Gelke, CK, et al. The Functional Assessment of Cancer Therapy (FACT) scale. Development of a brain subscale and revalidation of the general version (FACT-G) in patients with primary brain tumors. Cancer. 1995; 75: 1151–61.Google Scholar
15. Schag, CC, Heinrich, RL, Ganz, PA. Karnofsky performance statusrevisited: reliability, validity, and guidelines. J Clin Oncol. 1984; 2: 187–93.Google Scholar
16. Spector, PE. Validation. Summated Rating Scale Construction: An Introduction. Newbury Park: Sage, 1992: 49.Google Scholar
17. Kovacs, K, Horvath, E. Pathology of pituitary adenomas. In: Collu, R, Brown, GM, Van Loon, GR, editors. Clinical Neuroendocrinology. Boston: Blackwell Scientific Publications; 1988. p.333.Google Scholar
18. Gilden, JL, Hendryx, MS, Clar, S, Casia, C, Singh, SP. Diabetessupport groups improve health care of older diabetic patients. J Am Geriatr Soc. 1992; 40: 147–50.Google Scholar