Measuring quality of life in cancer survivors: a methodological review of existing scales
Corresponding Author
Nancy J. M. Pearce
Centre for Behavioural Research and Program Evaluation, University of Waterloo, Waterloo, Ont., Canada
Centre for Behavioural Research and Program Evaluation, University of Waterloo, 200 University Avenue, West., Waterloo, Ont., Canada N2L 3G1Search for more papers by this authorRob Sanson-Fisher
University of Newcastle, Callaghan, Newcastle, NSW, Australia
Search for more papers by this authorH. Sharon Campbell
Centre for Behavioural Research and Program Evaluation, University of Waterloo, Waterloo, Ont., Canada
Search for more papers by this authorCorresponding Author
Nancy J. M. Pearce
Centre for Behavioural Research and Program Evaluation, University of Waterloo, Waterloo, Ont., Canada
Centre for Behavioural Research and Program Evaluation, University of Waterloo, 200 University Avenue, West., Waterloo, Ont., Canada N2L 3G1Search for more papers by this authorRob Sanson-Fisher
University of Newcastle, Callaghan, Newcastle, NSW, Australia
Search for more papers by this authorH. Sharon Campbell
Centre for Behavioural Research and Program Evaluation, University of Waterloo, Waterloo, Ont., Canada
Search for more papers by this authorAbstract
Background: Studies examining quality of life (QoL) in cancer survivors have relied on instruments specific to the cancer patient population.
Method: MEDLINE and PsycINFO were systematically searched to identify instruments and papers reporting the psychometric qualities of relevant instruments. Two reviewers undertook data extraction with respect to reliability, validity, predictive validity, responsiveness, acceptability, readability, cross cultural acceptability and feasibility.
Results: Forty-two instruments were identified. Most were either measures of general health-related QoL or developed for individuals in active treatment. Nine were developed specifically for cancer survivors. None met the rigorous psychometric standards set by the review. All established acceptable levels of validity, however, only one instrument (Quality of Life-Cancer Survivors) demonstrated adequate test–retest reliability. Acceptability, feasibility and predictive validity remain unexamined. Readability was examined in only two (Cancer Survivors' Unmet needs and Quality of Life in Adult Cancer Survivors (QLACS)). Only two instruments (QLACS and Impact of Cancer) have been developed with a wide range of cancer survivors. Generally, shorter-term cancer survivors (1–5 years) are underrepresented.
Conclusion: There is a need for a psychometrically credible QoL instrument for cancer survivors who are 1–5 years post diagnosis. Copyright © 2007 John Wiley & Sons, Ltd.
References
- 1 Welch HG, Schwartz LM, Woloshin S. Are increasing 5-year survival rates evidence of success against cancer? J Am Med Assoc 2000; 283(22): 2975–2978.
- 2 LAG Reis, MP Eisner, CL Kosary, BF Hankey, BA Miller, L Clegg (eds) SEER Cancer Statistics Review, 1975–2001. National Cancer Institute: Bethesda, MD, 2005. Retrieved 25 September 2006 (Available from http://seer.cancer.gov/csr/1975_2001).
- 3 Yancik R. Cancer burden in the aged: an epidemiologic and demographic overview. Cancer 1997; 80(7): 1273–1283.
10.1002/(SICI)1097-0142(19971001)80:7<1273::AID-CNCR13>3.0.CO;2-4 CAS PubMed Web of Science® Google Scholar
- 4 Hartvig P, Aulin J, Hugerth M, Wallenberg S, Wagenius G. Fatigue in cancer patients treated with cytotoxic drugs. J Oncol Pharm Pract 2006; 12(3): 155–164.
- 5 Stark D, Kiely M, Smith A, Velikova G, House A, Selby P. Anxiety disorders in cancer patients: their nature, associations, and relation to quality of life. J Clin Oncol 2002; 20(14): 3137–3148.
- 6 Kim SS. Fertility preservation in female cancer patients: current developments and future directions. Fertil Steril 2006; 85(1): 1–11.
- 7 Tannock IF, Ahles TA, Ganz PA, Van Dam FS. Cognitive impairment associated with chemotherapy for cancer: report of a workshop. J Clin Oncol 2004; 22(11): 2233–2239.
- 8 Loge JH, Abrahamsen AF, Ekeberg, Kaasa S. Fatigue and psychiatric morbidity among Hodgkin's disease survivors. J Pain Symptom Manage 2000; 19(2): 91–99.
- 9 Ganz PA. Breast cancer, menopause, and long-term survivorship: critical issues for the 21st century. Am J Med 2005; 118(Suppl. 12B): 136–141.
- 10 Dubbelman YD, Dohle GR, Schröder FH. Sexual function before and after radical retropubic prostatectomy: a systematic review of prognostic indicators for a successful outcome. Eur Urol 2006; 50(4): 711–718.
- 11 Thornton A. Perceiving benefits in the cancer experience. J Clin Psychol Med Settings 2002; 9(2): 153–165.
- 12 Gotay CC, Muraoka MY. Quality of life in long-term survivors of adult-onset cancers. J Natl Cancer Inst 1998; 90(9): 656–667.
- 13 National Cancer Institute. Estimated U.S. cancer prevalence. Retrieved 12 September 2006 (Available from http://cancercontrol.cancer.gov/ocs/prevalence/prevalence.html).
- 14 National Cancer Institute. Office of Cancer Survivorship: Researcher Factsheet. Retrieved 21 September 2006 (Available from http://cancercontrol.cancer.gov/ocs/ResearcherFactSheet-NCILook-82006.doc).
- 15 Hewitt M, Greenfield S, Stovall E. From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, DC, 2006.
- 16 Ayanian J, Jacobsen P. Enhancing research on cancer survivors. J Clin Oncol 2006; 24(32): 5149–5153.
- 17 Ringdal GI, Ringdal K. Testing the EROTC quality of life questionnaire on cancer patients with heterogeneous diagnoses. Qual Life Res 1993; 2(2): 129–140.
- 18 Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, Silberman M, Yellen SB, Winicour P, Brannon J. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol 1993; 11(3): 570–579.
- 19 Rowland J, Hewitt M, Ganz P. Cancer survivorship: a new challenge in delivering quality cancer care. J Clin Oncol 2006; 24(32): 5101–5104.
- 20 Fitzpatrick R, Davey C, Buxton MJ, Jones DR. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess (Winchester, England) 1998; 2(14): i–iv, 1–74.
- 21 DeVellis RF. Scale Development: Theory and Application ( 2nd edn). Sage: Thousand Oakes, CA, 2003.
- 22 McDowell I. Measuring Health: A Guide to Rating Scales and Questionnaires ( 3rd edn). Oxford University Press: New York, NY, 2006.
10.1093/acprof:oso/9780195165678.001.0001 Google Scholar
- 23 Streiner DL, Norman GR. Health Measurement Scales: A Practical Guide to their Development and Use ( 3rd edn). Oxford University Press: New York, NY, 2003.
- 24 Portney L, Watkins M. Statistical measures in reliability. Foundations of Clinical Research. Appleton and Lange: East Norwalk, CT, 1993; 505–528.
- 25 Anastasi A, Urbina S. Psychological Testing ( 7th edn). Prentice-Hall: Upper Saddle River, NJ, 1997.
- 26 Kirsch I, Jungeblat A, Jenkins L, Kolstadt A. Adult Literacy in America: A First look at the Findings of the Adult Literacy Survey ( 3rd edn). US Department of Education: Washington, DC, 2002.
- 27 Avis NE, Smith K, McGraw S, Smith RG, Petronis VM, Carver CS. Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res 2005; 14(4): 1007–1023.
- 28 Baker F, Denniston M, Zabora JR, Marcellus D. Cancer problems in living and quality of life after bone marrow transplantation. J Clin Psychol Med Settings 2003; 10(1): 27–34.
- 29 Baker F, Curbow B, Wingard JR. Development of the satisfaction with Life Domain Scale for cancer. J Psychosoc Oncol 1992; 10(3): 75–90.
10.1300/J077V10N03_05 Google Scholar
- 30 Ferrell BR, Dow KH, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res 1995; 4(6): 523–531.
- 31 Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Lo SK, Wain G. Psycho-Oncology 2006; published on-line 19 Dec ahead of print.
- 32 Litwin MS, Hays RD, Fink A, Ganz P, Leake B, Brooke R. The UCLA Prostate Cancer Index: development, reliability and validity of a health related quality of life measure. Med Care 1998; 36(7): 1002–1012.
- 33 Thewes B, Butow P, Girgis A, Pendlebury S. Assessment of unmet needs among survivors of breast cancer. J Psychosoc Oncol 2004; 22(1): 51–71.
- 34 Wyatt G, Kurtz ME, Freidman LL, Given B, Given C. Preliminary testing of the Long-Term Quality of Life (LTQL) Instrument for female cancer survivors. J Nurs Meas 1996; 4(2): 153–170.
- 35 Zebrack BJ, Ganz P, Bernaards CA, Petersen L, Abraham L. Assessing the impact of cancer: development of a new instrument for long-term survivors. Psycho-Oncology 2006; 15(5): 407–421.
- 36 Baker F, Denniston M, Smith T, West M. Adult cancer survivors: How are they faring? Cancer 2005; 11(104): 2565–2576.
- 37 Wingard J, Curbow B, Baker F, Piantadosi S. Health, functional status, and employment of adult survivors of bone marrow transplantation. Ann Med 1991; 2(14): 113–118.
10.7326/0003-4819-114-2-113 Google Scholar
- 38 Brandeis J, Litwin M, Burnison C, Reiter R. Quality of life outcomes after brachytherapy for early stage prostate cancer. J Urol 2000; 163(3): 851–857.
- 39 Eaton D, Lepore S, Helgeson V. Early quality of life in patients with localized prostate carcinoma. Cancer 2001; 92(6): 1451–1459.
- 40 Lubeck D, Litwin M, Henning J, Stoddard M, Flanders S, Carroll P. Changes in health-related quality of life in the first year after treatment for prostate cancer: Results from CaPSURE. Urology 1999; 53(1): 180–186.
- 41 Baker F, Jodrey D, Zabora J, Douglas C, Fernandez-Kelly P. Empirically selected instruments for measuring quality-of-life dimensions in culturally diverse populations. J Natl Cancer Inst Monogr 1996; 20: 39–47.
- 42 Williams JI, Naylor CD. How should health status measures be assessed? Cautionary notes on procrustean frameworks. J Clin Epidemiol 1992; 45: 1347–1351.
- 43 Donovan K, Sanson-Fisher RW, Redman S. Measuring quality of life in cancer patients. J Clin Oncol 1989; 7(7): 959–968.
- 44 Ferrell BR, Dow KH, Leigh S, Ly J, Gulasekaram P. Quality of life in long term cancer survivors. Oncol Nurs Forum 1995; 22(6): 915–922.
- 45 Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. supportive care review group. Cancer 2000; 88(1): 226–237.
10.1002/(SICI)1097-0142(20000101)88:1<226::AID-CNCR30>3.0.CO;2-P CAS PubMed Web of Science® Google Scholar