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Published in: Supportive Care in Cancer 9/2012

01-09-2012 | Original Article

Head-to-head comparisons of quality of life instruments for young adult survivors of childhood cancer

Authors: I-Chan Huang, Gwendolyn P. Quinn, Kevin Krull, Katie Z. Eddleton, Devin C. Murphy, Elizabeth A. Shenkman, Patricia D. Shearer

Published in: Supportive Care in Cancer | Issue 9/2012

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Abstract

Purpose

Few studies examine the relevance of health-related quality of life (HRQOL) instruments for young adult survivors of childhood cancer (YASCC). This study compared the psychometric properties of two survivor-specific instruments, the Quality of Life–Cancer Survivor (QOL-CS) and Quality of Life in Adult Cancer Survivor (QLACS).

Methods

Data from 151 YASCC who enrolled in cancer/tumor registries of two medical centers were used. We examined construct validity by conducting confirmatory factor analysis using indices of chi-square statistic, comparative fit index, and root mean square error of approximation. We examined convergent/discriminant validity by comparing Pearson’s correlation coefficients of homogeneous (e.g., physical functioning and pain) of both instruments versus heterogeneous domains (e.g., physical and psychological functioning). We assessed known-groups validity by examining the extent to which HRQOL differed by late effects and comorbid conditions and calculated relative validity (RV) defined as contrasting F-statistics of individual domains to the domain with the lowest F-statistic. Superior known-groups validity is observed if a domain of one instrument demonstrates a higher RV than other domains of the instruments.

Results

YASCC data cannot replicate the constructs both instruments intend to measure, suggesting poor construct validity. Correlations of between-homogeneous and between-heterogeneous domains of both instruments were not discernible, suggesting poor convergent/discriminant validity. Both instruments were equally able to differentiate HRQOL between YASCC with and without late effects and comorbid conditions, suggesting similar known-groups validity.

Conclusions

Neither instrument is superior. Item response theory is suggested to select high-quality items from different instruments to improve HRQOL measure for YASCC.
Literature
1.
go back to reference Jemal A, Siegel R, Ward E, Hao Y, Xu J, Thun MJ (2009) Cancer statistics, 2009. CA Cancer J Clin 59:225–249PubMedCrossRef Jemal A, Siegel R, Ward E, Hao Y, Xu J, Thun MJ (2009) Cancer statistics, 2009. CA Cancer J Clin 59:225–249PubMedCrossRef
2.
go back to reference Schwartz CL (1999) Long-term survivors of childhood cancer: the late effects of therapy. Oncologist 4:45–54PubMed Schwartz CL (1999) Long-term survivors of childhood cancer: the late effects of therapy. Oncologist 4:45–54PubMed
3.
go back to reference Weiner SL, Simone JV, National Cancer Policy Board (U.S.) (2003) Childhood cancer survivorship: improving care and quality of life. National Academies Press, Washington, D.C Weiner SL, Simone JV, National Cancer Policy Board (U.S.) (2003) Childhood cancer survivorship: improving care and quality of life. National Academies Press, Washington, D.C
4.
go back to reference Blaauwbroek R, Stant AD, Groenier KH, Kamps WA, Meyboom B, Postma A (2007) Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors. Eur J Cancer 43:122–130PubMedCrossRef Blaauwbroek R, Stant AD, Groenier KH, Kamps WA, Meyboom B, Postma A (2007) Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors. Eur J Cancer 43:122–130PubMedCrossRef
5.
go back to reference Boman KK (2007) Assessing psychological and health-related quality of life (HRQL) late effects after childhood cancer. Acta Paediatr 96:1265–1268PubMedCrossRef Boman KK (2007) Assessing psychological and health-related quality of life (HRQL) late effects after childhood cancer. Acta Paediatr 96:1265–1268PubMedCrossRef
6.
go back to reference Ishida Y, Sakamoto N, Kamibeppu K, Kakee N, Iwai T, Ozono S, Maeda N, Okamura J, Asami K, Inada H, Honda M, Horibe K (2010) Late effects and quality of life of childhood cancer survivors: part 2. Impact of radiotherapy. Int J Hematol 92:95–104PubMedCrossRef Ishida Y, Sakamoto N, Kamibeppu K, Kakee N, Iwai T, Ozono S, Maeda N, Okamura J, Asami K, Inada H, Honda M, Horibe K (2010) Late effects and quality of life of childhood cancer survivors: part 2. Impact of radiotherapy. Int J Hematol 92:95–104PubMedCrossRef
7.
go back to reference Pemberger S, Jagsch R, Frey E, Felder-Puig R, Gadner H, Kryspin-Exner I, Topf R (2005) Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being. Support Care Cancer 13:49–56PubMedCrossRef Pemberger S, Jagsch R, Frey E, Felder-Puig R, Gadner H, Kryspin-Exner I, Topf R (2005) Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being. Support Care Cancer 13:49–56PubMedCrossRef
8.
go back to reference Apajasalo M, Sintonen H, Siimes MA, Hovi L, Holmberg C, Boyd H, Makela A, Rautonen J (1996) Health-related quality of life of adults surviving malignancies in childhood. Eur J Cancer 32A:1354–1358PubMedCrossRef Apajasalo M, Sintonen H, Siimes MA, Hovi L, Holmberg C, Boyd H, Makela A, Rautonen J (1996) Health-related quality of life of adults surviving malignancies in childhood. Eur J Cancer 32A:1354–1358PubMedCrossRef
9.
go back to reference Elkin TD, Phipps S, Mulhern RK, Fairclough D (1997) Psychological functioning of adolescent and young adult survivors of pediatric malignancy. Med Pediatr Oncol 29:582–588PubMedCrossRef Elkin TD, Phipps S, Mulhern RK, Fairclough D (1997) Psychological functioning of adolescent and young adult survivors of pediatric malignancy. Med Pediatr Oncol 29:582–588PubMedCrossRef
10.
go back to reference Novakovic B, Fears TR, Horowitz ME, Tucker MA, Wexler LH (1997) Late effects of therapy in survivors of Ewing's sarcoma family tumors. J Pediatr Hematol Oncol 19:220–225PubMedCrossRef Novakovic B, Fears TR, Horowitz ME, Tucker MA, Wexler LH (1997) Late effects of therapy in survivors of Ewing's sarcoma family tumors. J Pediatr Hematol Oncol 19:220–225PubMedCrossRef
11.
go back to reference Stam H, Grootenhuis MA, Caron HN, Last BF (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 15:31–43PubMedCrossRef Stam H, Grootenhuis MA, Caron HN, Last BF (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 15:31–43PubMedCrossRef
12.
go back to reference Zeltzer LK, Chen E, Weiss R, Guo MD, Robison LL, Meadows AT, Mills JL, Nicholson HS, Byrne J (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. J Clin Oncol 15:547–556PubMed Zeltzer LK, Chen E, Weiss R, Guo MD, Robison LL, Meadows AT, Mills JL, Nicholson HS, Byrne J (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. J Clin Oncol 15:547–556PubMed
13.
go back to reference Felder-Puig R, Formann AK, Mildner A, Bretschneider W, Bucher B, Windhager R, Zoubek A, Puig S, Topf R (1998) Quality of life and psychosocial adjustment of young patients after treatment of bone cancer. Cancer 83:69–75PubMedCrossRef Felder-Puig R, Formann AK, Mildner A, Bretschneider W, Bucher B, Windhager R, Zoubek A, Puig S, Topf R (1998) Quality of life and psychosocial adjustment of young patients after treatment of bone cancer. Cancer 83:69–75PubMedCrossRef
14.
go back to reference Maunsell E, Pogany L, Barrera M, Shaw AK, Speechley KN (2006) Quality of life among long-term adolescent and adult survivors of childhood cancer. J Clin Oncol 24:2527–2535PubMedCrossRef Maunsell E, Pogany L, Barrera M, Shaw AK, Speechley KN (2006) Quality of life among long-term adolescent and adult survivors of childhood cancer. J Clin Oncol 24:2527–2535PubMedCrossRef
15.
go back to reference Moe PJ, Holen A, Glomstein A, Madsen B, Hellebostad M, Stokland T, Wefring KW, Steen-Johnsen J, Nielsen B, Howlid H, Borsting S, Hapnes C (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? Pediatr Hematol Oncol 14:513–524PubMedCrossRef Moe PJ, Holen A, Glomstein A, Madsen B, Hellebostad M, Stokland T, Wefring KW, Steen-Johnsen J, Nielsen B, Howlid H, Borsting S, Hapnes C (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? Pediatr Hematol Oncol 14:513–524PubMedCrossRef
16.
go back to reference Ferrell BR, Dow KH, Grant M (1995) Measurement of the quality of life in cancer survivors. Qual Life Res 4:523–531PubMedCrossRef Ferrell BR, Dow KH, Grant M (1995) Measurement of the quality of life in cancer survivors. Qual Life Res 4:523–531PubMedCrossRef
17.
go back to reference Avis NE, Smith KW, McGraw S, Smith RG, Petronis VM, Carver CS (2005) Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res 14:1007–1023PubMedCrossRef Avis NE, Smith KW, McGraw S, Smith RG, Petronis VM, Carver CS (2005) Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res 14:1007–1023PubMedCrossRef
18.
go back to reference Zebrack BJ, Donohue JE, Gurney JG, Chesler MA, Bhatia S, Landier W (2010) Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res 19:207–218PubMedCrossRef Zebrack BJ, Donohue JE, Gurney JG, Chesler MA, Bhatia S, Landier W (2010) Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res 19:207–218PubMedCrossRef
19.
go back to reference Crespi CM, Ganz PA, Petersen L, Castillo A, Caan B (2008) Refinement and psychometric evaluation of the impact of cancer scale. J Natl Cancer Inst 100:1530–1541PubMedCrossRef Crespi CM, Ganz PA, Petersen L, Castillo A, Caan B (2008) Refinement and psychometric evaluation of the impact of cancer scale. J Natl Cancer Inst 100:1530–1541PubMedCrossRef
20.
go back to reference Holmbeck GN (2002) A developmental perspective on adolescent health and illness: an introduction to the special issues. J Pediatr Psychol 27:409–416PubMedCrossRef Holmbeck GN (2002) A developmental perspective on adolescent health and illness: an introduction to the special issues. J Pediatr Psychol 27:409–416PubMedCrossRef
21.
go back to reference Maurice-Stam H, Grootenhuis MA, Caron HN, Last BF (2007) Course of life of survivors of childhood cancer is related to quality of life in young adulthood. J Psychosoc Oncol 25:43–58PubMedCrossRef Maurice-Stam H, Grootenhuis MA, Caron HN, Last BF (2007) Course of life of survivors of childhood cancer is related to quality of life in young adulthood. J Psychosoc Oncol 25:43–58PubMedCrossRef
22.
go back to reference Stam H, Hartman EE, Deurloo JA, Groothoff J, Grootenhuis MA (2006) Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health 39:4–13PubMedCrossRef Stam H, Hartman EE, Deurloo JA, Groothoff J, Grootenhuis MA (2006) Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health 39:4–13PubMedCrossRef
23.
go back to reference Maurice-Stam H, Oort FJ, Last BF, Grootenhuis MA (2009) A predictive model of health-related quality of life in young adult survivors of childhood cancer. Eur J Cancer Care 18:339–349CrossRef Maurice-Stam H, Oort FJ, Last BF, Grootenhuis MA (2009) A predictive model of health-related quality of life in young adult survivors of childhood cancer. Eur J Cancer Care 18:339–349CrossRef
24.
go back to reference Ware JE Jr, Sherbourne CD (1992) The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30:473–483PubMedCrossRef Ware JE Jr, Sherbourne CD (1992) The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30:473–483PubMedCrossRef
25.
go back to reference Grant MD, Piotrowski ZH, Chappell R (1995) Self-reported health and survival in the longitudinal study of aging, 1984–1986. J Clin Epidemiol 48:375–387PubMedCrossRef Grant MD, Piotrowski ZH, Chappell R (1995) Self-reported health and survival in the longitudinal study of aging, 1984–1986. J Clin Epidemiol 48:375–387PubMedCrossRef
26.
go back to reference Fayers PM, Machin D (2007) Quality of life: the assessment, analysis, and interpretation of patient-reported outcomes. Wiley, Chichester Fayers PM, Machin D (2007) Quality of life: the assessment, analysis, and interpretation of patient-reported outcomes. Wiley, Chichester
27.
go back to reference Hu L, Bentler BM (1999) Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Modeling 6:1–55CrossRef Hu L, Bentler BM (1999) Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Modeling 6:1–55CrossRef
28.
go back to reference Cohen J (1988) Statistical power analysis for the behavioral sciences. L. Erlbaum Associates, Hillsdale Cohen J (1988) Statistical power analysis for the behavioral sciences. L. Erlbaum Associates, Hillsdale
29.
go back to reference McHorney CA, Ware JE Jr, Rogers W, Raczek AE, Lu JF (1992) The validity and relative precision of MOS short- and long-form health status scales and Dartmouth COOP charts. Results from the medical outcomes study. Med Care 30:MS253–MS265PubMedCrossRef McHorney CA, Ware JE Jr, Rogers W, Raczek AE, Lu JF (1992) The validity and relative precision of MOS short- and long-form health status scales and Dartmouth COOP charts. Results from the medical outcomes study. Med Care 30:MS253–MS265PubMedCrossRef
30.
go back to reference Drew S (2007) ‘Having cancer changed my life, and changed my life forever’: survival, illness legacy and service provision following cancer in childhood. Chronic Illn 3:278–295PubMedCrossRef Drew S (2007) ‘Having cancer changed my life, and changed my life forever’: survival, illness legacy and service provision following cancer in childhood. Chronic Illn 3:278–295PubMedCrossRef
31.
go back to reference Zebrack BJ, Casillas J, Nohr L, Adams H, Zeltzer LK (2004) Fertility issues for young adult survivors of childhood cancer. Psychooncology 13:689–699PubMedCrossRef Zebrack BJ, Casillas J, Nohr L, Adams H, Zeltzer LK (2004) Fertility issues for young adult survivors of childhood cancer. Psychooncology 13:689–699PubMedCrossRef
32.
go back to reference Miedema B, Hamilton R, Easley J (2007) From “invincibility” to “normalcy”: coping strategies of young adults during the cancer journey. Palliat Support Care 5:41–49PubMedCrossRef Miedema B, Hamilton R, Easley J (2007) From “invincibility” to “normalcy”: coping strategies of young adults during the cancer journey. Palliat Support Care 5:41–49PubMedCrossRef
33.
go back to reference Parry C, Chesler MA (2005) Thematic evidence of psychosocial thriving in childhood cancer survivors. Qual Health Res 15:1055–1073PubMedCrossRef Parry C, Chesler MA (2005) Thematic evidence of psychosocial thriving in childhood cancer survivors. Qual Health Res 15:1055–1073PubMedCrossRef
34.
go back to reference Enskar K, Bertero C (2010) Young adult survivors of childhood cancer; experiences affecting self-image, relationships, and present life. Cancer Nurs 33:E18–E24PubMedCrossRef Enskar K, Bertero C (2010) Young adult survivors of childhood cancer; experiences affecting self-image, relationships, and present life. Cancer Nurs 33:E18–E24PubMedCrossRef
35.
go back to reference Chou LN, Hunter A (2009) Factors affecting quality of life in Taiwanese survivors of childhood cancer. J Adv Nurs 65:2131–2141PubMedCrossRef Chou LN, Hunter A (2009) Factors affecting quality of life in Taiwanese survivors of childhood cancer. J Adv Nurs 65:2131–2141PubMedCrossRef
36.
go back to reference Casillas JN, Zebrack BJ, Zeltzer LK (2006) Health-related quality of life for Latino survivors of childhood cancer. J Psychosoc Oncol 24:125–145PubMedCrossRef Casillas JN, Zebrack BJ, Zeltzer LK (2006) Health-related quality of life for Latino survivors of childhood cancer. J Psychosoc Oncol 24:125–145PubMedCrossRef
37.
go back to reference Cantrell MA, Conte TM (2009) Between being cured and being healed: the paradox of childhood cancer survivorship. Qual Health Res 19:312–322PubMedCrossRef Cantrell MA, Conte TM (2009) Between being cured and being healed: the paradox of childhood cancer survivorship. Qual Health Res 19:312–322PubMedCrossRef
38.
go back to reference Huang IC, Wu AW, Frangakis C (2006) Do the SF-36 and WHOQOL-BREF measure the same constructs? Evidence from the Taiwan population. Qual Life Res 15:15–24PubMedCrossRef Huang IC, Wu AW, Frangakis C (2006) Do the SF-36 and WHOQOL-BREF measure the same constructs? Evidence from the Taiwan population. Qual Life Res 15:15–24PubMedCrossRef
39.
go back to reference Hays RD, Morales LS, Reise SP (2000) Item response theory and health outcomes measurement in the 21st century. Med Care 38:II28–II42PubMedCrossRef Hays RD, Morales LS, Reise SP (2000) Item response theory and health outcomes measurement in the 21st century. Med Care 38:II28–II42PubMedCrossRef
40.
go back to reference McHorney CA (2003) Ten recommendations for advancing patient-centered outcomes measurement for older persons. Ann Intern Med 139:403–409PubMed McHorney CA (2003) Ten recommendations for advancing patient-centered outcomes measurement for older persons. Ann Intern Med 139:403–409PubMed
41.
go back to reference Bjorner JB, Chang CH, Thissen D, Reeve BB (2007) Developing tailored instruments: item banking and computerized adaptive assessment. Qual Life Res 16(Suppl 1):95–108PubMedCrossRef Bjorner JB, Chang CH, Thissen D, Reeve BB (2007) Developing tailored instruments: item banking and computerized adaptive assessment. Qual Life Res 16(Suppl 1):95–108PubMedCrossRef
42.
go back to reference Martin M, Kosinski M, Bjorner JB, Ware JE 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. Qual Life Res 16:647–660PubMedCrossRef Martin M, Kosinski M, Bjorner JB, Ware JE 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. Qual Life Res 16:647–660PubMedCrossRef
43.
go back to reference DeSalvo KB, Fisher WP, Tran K, Bloser N, Merrill W, Peabody J (2006) Assessing measurement properties of two single-item general health measures. Qual Life Res 15:191–201PubMedCrossRef DeSalvo KB, Fisher WP, Tran K, Bloser N, Merrill W, Peabody J (2006) Assessing measurement properties of two single-item general health measures. Qual Life Res 15:191–201PubMedCrossRef
44.
go back to reference Kazak AE, Derosa BW, Schwartz LA, Hobbie W, Carlson C, Ittenbach RF, Mao JJ, Ginsberg JP (2010) Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. J Clin Oncol 28:2002–2007PubMedCrossRef Kazak AE, Derosa BW, Schwartz LA, Hobbie W, Carlson C, Ittenbach RF, Mao JJ, Ginsberg JP (2010) Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. J Clin Oncol 28:2002–2007PubMedCrossRef
Metadata
Title
Head-to-head comparisons of quality of life instruments for young adult survivors of childhood cancer
Authors
I-Chan Huang
Gwendolyn P. Quinn
Kevin Krull
Katie Z. Eddleton
Devin C. Murphy
Elizabeth A. Shenkman
Patricia D. Shearer
Publication date
01-09-2012
Publisher
Springer-Verlag
Published in
Supportive Care in Cancer / Issue 9/2012
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-011-1315-5

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