Hostname: page-component-76fb5796d-22dnz Total loading time: 0 Render date: 2024-04-26T23:49:51.745Z Has data issue: false hasContentIssue false
  • English
  • Français

Development of a Concise QOL Questionnaire for Brain Tumor Patients

Published online by Cambridge University Press:  02 December 2014

Philippe Goffaux ,
Marie Boudrias ,
David Mathieu ,
Catherine Charpentier ,
Nadia Veilleux  and
David Fortin
Philippe Goffaux
Affiliation:
Department of Neurosurgery and Neuro-oncology, Université de Sherbrooke, Faculty of Medicine, Sherbrooke, Québec, Canada
Marie Boudrias
Affiliation:
Department of Neurosurgery and Neuro-oncology, Université de Sherbrooke, Faculty of Medicine, Sherbrooke, Québec, Canada
David Mathieu
Affiliation:
Department of Neurosurgery and Neuro-oncology, Université de Sherbrooke, Faculty of Medicine, Sherbrooke, Québec, Canada
Catherine Charpentier
Affiliation:
Department of Neurosurgery and Neuro-oncology, Université de Sherbrooke, Faculty of Medicine, Sherbrooke, Québec, Canada
Nadia Veilleux
Affiliation:
Department of Neurosurgery and Neuro-oncology, Université de Sherbrooke, Faculty of Medicine, Sherbrooke, Québec, Canada
David Fortin*
Affiliation:
Department of Neurosurgery and Neuro-oncology, Université de Sherbrooke, Faculty of Medicine, Sherbrooke, Québec, Canada
*
Université de Sherbrooke, Department of Neurosurgery and Neuro-oncology, Faculty of Medicine, 3001, 12th avenue north, Sherbrooke, Quebec, J1H 5N4, Canada
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.
Background:

The purpose of this study was to develop and validate a self-administered questionnaire to measure the health-related quality of life (QOL) of patients with brain cancer. We wanted to assess both core and disease-specific concerns in a single, easy-to-use instrument, thus promoting concision and clinical utility. The questionnaire departs from its predecessors in that it was designed for- and validated among French speaking Canadians.

Methods:

A focus group of health professionals was used to develop items for the questionnaire, which was later validated with 105 patients suffering from brain cancer. The underlying structure of the questionnaire was investigated using principal component analysis and confirmed using a principal factor analysis.

Results:

The final version of the questionnaire contains 30 items. Seven multi-item scales, tapping into distinct dimensions of QOL, were uncovered (i.e., functional well-being, symptom severity/fear of death, social support/acceptance of disease, autonomy in personal care, digestive symptomatology, neurocognitive function, and pain). Assessment of reliability revealed elevated internal consistency for each of the seven scales (Cronbach coefficient alpha ≥≥.65), whereas known-groups validity (anchor-based approach) revealed that the different dimensions uniquely discriminated between patients with different functional levels (Karnofsky Performance Scores) and clinical status (exposure to neurosurgery, radiotherapy, and use of chemotherapy and anticonvulsants).

Conclusion:

Our QOL questionnaire, the Sherbrooke Neuro-Oncology Assessment Scale, or SNAS, taps into both core and disease-specific issues relevant to neuro-oncology patients. It has good validity and reliability, and clearly reflects the multidimensional nature of QOL. Depending on the research focus, it may be used in clinical trials to track the impact of disease and/or treatment on satisfaction, functional status, and general well-being.

Type
Original Article
Information
Canadian Journal of Neurological Sciences , Volume 36 , Issue 3 , May 2009 , pp. 340 - 348
Copyright
Copyright © The Canadian Journal of Neurological 2009

References

1. Mauer, ME, Taphoorn, MJ, Bottomley, A, Coens, C, Efficace, F, Sanson, M, et al. Prognostic value of health-related quality-of-life data in predicting survival in patients with anaplastic oligodendrogliomas, from a phase III EORTC brain cancer group study. J Clin Oncol. 2007; 25:5731–7.Google Scholar
2. Bampoe, J, Laperriere, N, Pintilie, M, Glen, J, Micallef, J, Bernstein, M. Quality of life in patients with glioblastoma multiforme participating in a randomized study of brachytherapy as a boost treatment. J Neurosurg. 2000; 93:917–26.Google Scholar
3. Aaronson, NK, Ahmedzai, S, Bergman, B, Bullinger, M, Cull, A, Duez, NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993; 85:365–76.Google Scholar
4. Cella, DF, Tulsky, DS, Gray, G, Sarafian, B, Linn, E, Bonomi, A, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol. 1993; 11:570–9.Google Scholar
5. Conroy, T, Mercier, M, Bonneterre, J, Luporsi, E, Lefebvre, JL, Lapeyre, M, et al. French version of FACT-G: validation and comparison with other cancer-specific instruments. Eur J Cancer. 2004; 40:2243–52.Google Scholar
6. Taphoorn, MJ, Stupp, R, Coens, C, Osoba, D, Kortmann, R, van den Bent, MJ, et al. Health-related quality of life in patients with glioblastoma: a randomised controlled trial. Lancet Oncol. 2005; 6:937–44.CrossRefGoogle ScholarPubMed
7. Li, J, Bentzen, SM, Li, J, Renschler, M, Mehta, MP. Relationship between neurocognitive function and quality of life after wholebrain radiotherapy in patients with brain metastasis. Int J Radiat Oncol Biol Phys. 2008; 71:64–70.Google Scholar
8. Coyne, JC, Pajak, TF, Harris, J, Konski, A, Movsas, B, Ang, K, et al. Emotional well-being does not predict survival in head and neck cancer patients: a Radiation Therapy Oncology Group study. Cancer. 2007; 110:2568–75.Google Scholar
9. Rosenberg, J. How well are we doing in caring for the patient with primary malignant brain tumor? Are we measuring the outcomes that truly matter? A commentary. Neurosurg Focus. 1998; 4:e5.Google Scholar
10. Mackworth, N, Fobair, P, Prados, MD. Quality of life self-reports from 200 brain tumor patients: comparisons with Karnofsky performance scores. J Neurooncol. 1992; 14:243–53.Google Scholar
11. Gerrard, GE, Prestwich, RJ, Edwards, A, Russon, LJ, Richards, F, Johnston, CF, et al. Investigating the palliative efficacy of wholebrain radiotherapy for patients with multiple-brain metastases and poor prognostic features. Clin Oncol (R Coll Radiol). 2003; 15:422–8.Google Scholar
12. Roa, W, Brasher, PM, Bauman, G, Anthes, M, Bruera, E, Chan, A, et al. Abbreviated course of radiation therapy in older patients with glioblastoma multiforme: a prospective randomized clinical trial. J Clin Oncol. 2004; 22:1583–8.CrossRefGoogle ScholarPubMed
13. Schag, CC, Heinrich, RL, Ganz, PA. Karnofsky performance status revisited: reliability, validity, and guidelines. J Clin Oncol. 1984; 2:187–93.Google Scholar
14. Mor, V, Laliberte, L, Morris, JN, Wiemann, M. The Karnofsky Performance Status Scale. An examination of its reliability and validity in a research setting. Cancer. 1984; 53:2002–7.Google Scholar
15. Rat, AC, Pouchot, J, Guillemin, F, Baumann, M, Retel-Rude, N, Spitz, E, et al. Content of quality-of-life instruments is affected by item-generation methods. Int J Qual Health Care. 2007; 19: 390–8.Google Scholar
16. Kan, P, Cusimano, M. Validation of a quality-of-life questionnaire for patients with pituitary adenoma. Can J Neurol Sci. 2006; 33: 80–5.Google Scholar
17. Schipper, H, Clinch, J, McMurray, A, Levitt, M. Measuring the quality of life of cancer patients: the Functional Living Index-Cancer: development and validation. J Clin Oncol. 1984; 2: 472–83.CrossRefGoogle Scholar
18. Stewart, AL, Ware, JE Jr., Brook, RH. Advances in the measurement of functional status: construction of aggregate indexes. Med Care. 1981; 19:473–88.Google Scholar
19. Groenvold, M, Petersen, MA, Aaronson, NK, Arraras, JI, Blazeby, JM, Bottomley, A, et al. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer. 2006; 42:55–64.Google Scholar
20. Schiff, D, O’Neill, BP. Principles of Neuro-Oncology. 1st ed. New York: McGraw-Hill; 2005.Google Scholar
21. Ray, A, Block, SD, Friedlander, RJ, Zhang, B, Maciejewski, PK, Prigerson, HG. Peaceful awareness in patients with advanced cancer. J Palliat Med. 2006; 9:1359–68.Google Scholar
22. Mack, JW, Nilsson, M, Balboni, T, Friedlander, RJ, Block, SD, Trice, E, et al. Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE): validation of a scale to assess acceptance and struggle with terminal illness. Cancer. 2008; 112:2509–17.CrossRefGoogle ScholarPubMed
23. Erikson, EH. The life cycle completed. New York: Norton; 1982.Google Scholar
24. Osoba, D, Aaronson, NK, Muller, M, Sneeuw, K, Hsu, MA, Yung, WK, et al. The development and psychometric validation of a brain cancer quality-of-life questionnaire for use in combination with general cancer-specific questionnaires. Qual Life Res. 1996; 5: 139–50.Google Scholar
25. Weitzner, MA, Meyers, CA, Gelke, CK, Byrne, KS, Cella, DF, Levin, VA. 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
26. Osoba, D, Brada, M, Prados, MD, Yung, WK. Effect of disease burden on health-related quality of life in patients with malignant gliomas. Neuro Oncol. 2000; 2:221–8.Google Scholar