Skip to main content
Mijn bibliotheek
Shop
Nieuws Boeken Tijdschriften E-learning Web-tv Video Audio
Tips voor Mijn BSL
UITGEBREID ZOEKEN
Inloggen
Top
Quality of Life Research
Gepubliceerd in: Quality of Life Research 8/2012

01-10-2012

Using three legacy measures to develop a health-related quality of life tool for young adult survivors of childhood cancer

Auteurs: I-Chan Huang, Gwendolyn P. Quinn, Pey-Shan Wen, Elizabeth A. Shenkman, Dennis A. Revicki, Kevin Krull, Zhushan Li, Patricia D. Shearer

Gepubliceerd in: Quality of Life Research | Uitgave 8/2012

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

Abstract

Background

Little attention has been paid to selecting and developing health-related quality of life (HRQOL) measurement tools for young adult survivors of childhood cancer (YASCC). The primary purpose of this study was to develop a HRQOL tool for YASCC based on three legacy instruments.

Methods

Data collected from 151 YASCC were analyzed. HRQOL was measured using the Medical Outcomes Study SF-36, Quality of Life in Adult Cancer Survivors, and Quality of Life-Cancer Survivor. We used the following stages to develop our HRQOL tool: mapping items from three instruments into a common HRQOL construct, checking dimensionality using confirmatory factor analyses (CFA), and equating items using Rasch modeling.

Results

We assigned 123 items to a HRQOL construct comprised of six generic and eight survivor-specific domains. CFA retained 107 items that meet the assumptions of unidimensionality and local independence. Rasch analysis retained 68 items that satisfied the indices of information-weighted/outlier-sensitive fit statistic mean square. However, items in most domains possess relatively easy measurement properties, whereas YASCC’s underlying HRQOL was on the middle to higher levels.

Conclusions

Psychometric properties of the established tool for measuring HRQOL of YASCC were not satisfied. Future studies need to refine this tool, especially adding more challenging items.
vorige artikel ‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients
volgende artikel Translation and validation of Korean Functional Assessment of Cancer Therapy-Esophageal (FACT-E) scale with squamous cell carcinoma and chemoradiation-only patients
Literatuur
1.
Jemal, A., Siegel, R., Ward, E., Hao, Y., Xu, J., & Thun, M. J. (2009). Cancer statistics, 2009. CA Cancer Journal of Clinical, 59, 225–249.CrossRef
2.
National Cancer Policy Board (U.S.), Weiner, S. L., & Simone, J. V. (2003) Childhood cancer survivorship: Improving care and quality of life (p. 206). Washington, DC: National Academies Press.
3.
Oeffinger, K. C., Mertens, A. C., Sklar, C. A., Kawashima, T., Hudson, M. M., Meadows, A. T., et al. (2006). Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine, 355, 1572–1582.PubMedCrossRef
4.
Geenen, M. M., Cardous-Ubbink, M. C., Kremer, L. C., van den Bos, C., van der Pal, H. J., Heinen, R. C., et al. (2007). Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. Journal of the American Medical Association, 297, 2705–2715.PubMedCrossRef
5.
Blaauwbroek, R., Stant, A. D., Groenier, K. H., Kamps, W. A., Meyboom, B., & Postma, A. (2007). Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors. European Journal of Cancer, 43, 122–130.PubMedCrossRef
6.
Boman, K. K. (2007). Assessing psychological and health-related quality of life (HRQL) late effects after childhood cancer. Acta Paediatrica, 96, 1265–1268.PubMedCrossRef
7.
Ishida, Y., Honda, M., Ozono, S., Okamura, J., Asami, K., Maeda, N., et al. (2010). Late effects and quality of life of childhood cancer survivors: Part 1. Impact of stem cell transplantation. International Journal of Hematology, 91, 865–876.PubMedCrossRef
8.
Ishida, Y., Sakamoto, N., Kamibeppu, K., Kakee, N., Iwai, T., Ozono, S., et al. (2010). Late effects and quality of life of childhood cancer survivors: Part 2. Impact of radiotherapy. International Journal of Hematology, 92, 95–104.PubMedCrossRef
9.
Pemberger, S., Jagsch, R., Frey, E., Felder-Puig, R., Gadner, H., Kryspin-Exner, I., et al. (2005). Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being. Supportive Care in Cancer, 13, 49–56.PubMedCrossRef
10.
Apajasalo, M., Sintonen, H., Siimes, M. A., Hovi, L., Holmberg, C., Boyd, H., et al. (1996). Health-related quality of life of adults surviving malignancies in childhood. European Journal of Cancer, 32A, 1354–1358.PubMedCrossRef
11.
Elkin, T. D., Phipps, S., Mulhern, R. K., & Fairclough, D. (1997). Psychological functioning of adolescent and young adult survivors of pediatric malignancy. Medical and Pediatric Oncology, 29, 582–588.PubMedCrossRef
12.
Novakovic, B., Fears, T. R., Horowitz, M. E., Tucker, M. A., & Wexler, L. H. (1997). Late effects of therapy in survivors of Ewing’s sarcoma family tumors. Journal of Pediatric Hematology/oncology, 19, 220–225.PubMedCrossRef
13.
Stam, H., Grootenhuis, M. A., Caron, H. N., & Last, B. F. (2006). Quality of life and current coping in young adult survivors of childhood cancer: Positive expectations about the further course of the disease were correlated with better quality of life. Psychooncology, 15, 31–43.PubMedCrossRef
14.
Zeltzer, L. K., Chen, E., Weiss, R., Guo, M. D., Robison, L. L., Meadows, A. T., et al. (1997). Comparison of psychologic outcome in adult survivors of childhood acute lymphoblastic leukemia versus sibling controls: A cooperative children’s cancer group and national institutes of health study. Journal of Clinical Oncology, 15, 547–556.PubMed
15.
Felder-Puig, R., Formann, A. K., Mildner, A., Bretschneider, W., Bucher, B., Windhager, R., et al. (1998). Quality of life and psychosocial adjustment of young patients after treatment of bone cancer. Cancer, 83, 69–75.PubMedCrossRef
16.
Maunsell, E., Pogany, L., Barrera, M., Shaw, A. K., & Speechley, K. N. (2006). Quality of life among long-term adolescent and adult survivors of childhood cancer. Journal of Clinical Oncology, 24, 2527–2535.PubMedCrossRef
17.
Moe, P. J., Holen, A., Glomstein, A., Madsen, B., Hellebostad, M., Stokland, T., et al. (1997). Long-term survival and quality of life in patients treated with a national all protocol 15–20 years earlier: IDM/HDM and late effects? Pediatric Hematology and Oncology, 14, 513–524.PubMedCrossRef
18.
Veenstra, K. M., Sprangers, M. A., van der Eyken, J. W., & Taminiau, A. H. (2000). Quality of life in survivors with a van ness-borggreve rotationplasty after bone tumour resection. Journal of Surgical Oncology, 73, 192–197.PubMedCrossRef
19.
Mulrooney, D. A., Ness, K. K., Neglia, J. P., Whitton, J. A., Green, D. M., Zeltzer, L. K., et al. (2008). Fatigue and sleep disturbance in adult survivors of childhood cancer: A report from the childhood cancer survivor study (CCSS). Sleep, 31, 271–281.PubMed
20.
O’Leary, T. E., Diller, L., & Recklitis, C. J. (2007). The effects of response bias on self-reported quality of life among childhood cancer survivors. Quality of Life Research, 16, 1211–1220.PubMedCrossRef
21.
Ferrell, B. R., Dow, K. H., & Grant, M. (1995). Measurement of the quality of life in cancer survivors. Quality of Life Research, 4, 523–531.PubMedCrossRef
22.
Avis, N. E., Smith, K. W., McGraw, S., Smith, R. G., Petronis, V. M., & Carver, C. S. (2005). Assessing quality of life in adult cancer survivors (QLACS). Quality of Life Research, 14, 1007–1023.PubMedCrossRef
23.
Zebrack, B. J., Donohue, J. E., Gurney, J. G., Chesler, M. A., Bhatia, S., & Landier, W. (2010). Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Quality of Life Research, 19, 207–218.PubMedCrossRef
24.
Crespi, C. M., Ganz, P. A., Petersen, L., Castillo, A., & Caan, B. (2008). Refinement and psychometric evaluation of the impact of cancer scale. Journal of the National Cancer Institute, 100, 1530–1541.PubMedCrossRef
25.
Bhatia, S., Robison, L. L., Francisco, L., Carter, A., Liu, Y., Grant, M., et al. (2005). Late mortality in survivors of autologous hematopoietic-cell transplantation: Report from the bone marrow transplant survivor study. Blood, 105, 4215–4222.PubMedCrossRef
26.
Hays, R. D., Morales, L. S., & Reise, S. P. (2000). Item response theory and health outcomes measurement in the 21st century. Medical Care, 38 II28–II42.
27.
Embretson, S. E., & Reise, S. P. (2000). Item response theory for psychologists (p. 371). Mahwah, NJ: Lawrence Erlbaum Associates.
28.
Bjorner, J. B., Chang, C. H., Thissen, D., & Reeve, B. B. (2007). Developing tailored instruments: Item banking and computerized adaptive assessment. Quality of Life Research, 16(Suppl 1), 95–108.PubMedCrossRef
29.
Edelen, M. O., & Reeve, B. B. (2007). Applying item response theory (IRT) modeling to questionnaire development, evaluation, and refinement. Quality of Life Research, 16(Suppl 1), 5–18.PubMedCrossRef
30.
Ware, J. E., Jr, & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473–483.PubMedCrossRef
31.
Badia, X., Prieto, L., Roset, M., Diez-Perez, A., & Herdman, M. (2002). Development of a short osteoporosis quality of life questionnaire by equating items from two existing instruments. Journal of Clinical Epidemiology, 55, 32–40.PubMedCrossRef
32.
Clinton-McHarg, T., Carey, M., Sanson-Fisher, R., Shakeshaft, A., & Rainbird, K. (2010). Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: A critical review. Health Qual Life Outcomes, 8, 25.PubMedCrossRef
33.
Langeveld, N. E., Stam, H., Grootenhuis, M. A., & Last, B. F. (2002). Quality of life in young adult survivors of childhood cancer. Supportive Care in Cancer, 10, 579–600.PubMedCrossRef
34.
Zebrack, B., Hamilton, R., & Smith, A. W. (2009). Psychosocial outcomes and service use among young adults with cancer. Seminars in Oncology, 36, 468–477.PubMedCrossRef
35.
Hu, L., & Bentler, B. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling, 6, 1–55.CrossRef
36.
Smith, E. V., & Smith, R. M. (2004). Introduction to Rasch measurement: theory, models and applications (p. 689). Maple Grove: JAM Press.
37.
Fayers, P. M., & Machin, D. (2007). Quality of life: The assessment, analysis, and interpretation of patient-reported outcomes. Chichester, NJ: Wiley.
38.
Norman, G. R., Sloan, J. A., & Wyrwich, K. W. (2003). Interpretation of changes in health-related quality of life: The remarkable universality of half a standard deviation. Medical Care, 41, 582–592.PubMed
39.
Linacre, J. M. (2003) A user’s guide to WINSTEPS. Chicago, IL: WINSTEPS.
40.
STATCorp. (2005). Stata statistical software: Release 9.0. College Station, TX: Stata Corporation.
41.
Zebrack, B. J., & Chesler, M. A. (2001). A psychometric analysis of the quality of life-cancer survivors (QOL-CS) in survivors of childhood cancer. Quality of Life Research, 10, 319–329.PubMedCrossRef
42.
Berkowitz, C. D. (2008). Pediatrics: a primary care approach (p. 837). Elk Grove Village, IL: American Academy of Pediatrics.
43.
Parry, C. (2003). Embracing uncertainty: An exploration of the experiences of childhood cancer survivors. Qualitative Health Research, 13, 227–246.PubMedCrossRef
44.
Trotti, A., Colevas, A. D., Setser, A., Rusch, V., Jaques, D., Budach, V., et al. (2003). CTCAE v3.0: Development of a comprehensive grading system for the adverse effects of cancer treatment. Seminars in Radiation Oncology, 13, 176–181.PubMedCrossRef
45.
Fredheim, O. M., Borchgrevink, P. C., Saltnes, T., & Kaasa, S. (2007). Validation and comparison of the health-related quality-of-life instruments EORTC QLQ-C30 and SF-36 in assessment of patients with chronic nonmalignant pain. Journal of Pain and Symptom Management, 34, 657–665.PubMedCrossRef
46.
Kuenstner, S., Langelotz, C., Budach, V., Possinger, K., Krause, B., & Sezer, O. (2002). The comparability of quality of life scores. A multitrait multimethod analysis of the EORTC QLQ-C30, SF-36 and FLIC questionnaires. European Journal of Cancer, 38, 339–348.PubMedCrossRef
47.
Martin, M., Kosinski, M., Bjorner, J. B., Ware, J. E., Jr., Maclean, R., & Li, T. (2007). Item response theory methods can improve the measurement of physical function by combining the modified health assessment questionnaire and the SF-36 physical function scale. Quality of Life Research, 16, 647–660.PubMedCrossRef
48.
Enskar, K., & Bertero, C. (2010). Young adult survivors of childhood cancer; experiences affecting self-image, relationships, and present life. Cancer Nursing, 33, E18–E24.PubMedCrossRef
49.
Chou, L. N., & Hunter, A. (2009). Factors affecting quality of life in Taiwanese survivors of childhood cancer. Journal of Advanced Nursing, 65, 2131–2141.PubMedCrossRef
50.
Casillas, J. N., Zebrack, B. J., & Zeltzer, L. K. (2006). Health-related quality of life for Latino survivors of childhood cancer. Journal of Psychosocial Oncology, 24, 125–145.PubMedCrossRef
51.
Cantrell, M. A., & Conte, T. M. (2009). Between being cured and being healed: The paradox of childhood cancer survivorship. Qualitative Health Research, 19, 312–322.PubMedCrossRef
52.
Parry, C., & Chesler, M. A. (2005). Thematic evidence of psychosocial thriving in childhood cancer survivors. Qualitative Health Research, 15, 1055–1073.PubMedCrossRef
53.
Green, D., Galvin, H., & Horne, B. (2003). The psycho-social impact of infertility on young male cancer survivors: A qualitative investigation. Psychooncology, 12, 141–152.PubMedCrossRef
54.
Zebrack, B. J., Casillas, J., Nohr, L., Adams, H., & Zeltzer, L. K. (2004). Fertility issues for young adult survivors of childhood cancer. Psychooncology, 13, 689–699.PubMedCrossRef
55.
Boydell, K. M., Stasiulis, E., Greenberg, M., Greenberg, C., & Spiegler, B. (2008). I’ll show them: The social construction of (in)competence in survivors of childhood brain tumors. Journal of Pediatric Oncology Nursing, 25, 164–174.PubMedCrossRef
56.
Drew, S. (2007). ‘Having cancer changed my life, and changed my life forever’: Survival, illness legacy and service provision following cancer in childhood. Chronic Illness, 3, 278–295.PubMedCrossRef
Metagegevens
Titel
Using three legacy measures to develop a health-related quality of life tool for young adult survivors of childhood cancer
Auteurs
I-Chan Huang
Gwendolyn P. Quinn
Pey-Shan Wen
Elizabeth A. Shenkman
Dennis A. Revicki
Kevin Krull
Zhushan Li
Patricia D. Shearer
Publicatiedatum
01-10-2012
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 8/2012
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-0055-9

Andere artikelen Uitgave 8/2012

Quality of Life Research 8/2012 Naar de uitgave

OriginalPaper

Evaluation of patients’ and physicians’ expectations and attributes of osteoarthritis treatment using Kano methodology

OriginalPaper

The quality of work life of people with severe mental disorders working in social enterprises: a qualitative study

OriginalPaper

Characteristics and quality of pediatric cost-utility analyses

OriginalPaper

‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients

OriginalPaper

The Audit of Diabetes-Dependent Quality of Life 19 (ADDQoL): feasibility, reliability and validity in a population-based sample of Australian adults

OriginalPaper

Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures