The effects of response bias on self-reported quality of life among childhood cancer survivors

O’Leary, Tara E.; Diller, Lisa; Recklitis, Christopher J.

doi:10.1007/s11136-007-9231-3

Cited by 75 publications

(71 citation statements)

References 81 publications

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“…On the other hand, there are some data indicating that most people show life satisfaction even with very poor health states, such as amputation (38,39), and several studies indicating that survivors of cancers in general and childhood cancers in particular may be biased reporters and tend to deny difficulties and overestimate their positive health and satisfaction (40)(41)(42)(43)(44). O'Leary et al (45) reported from a sample of Dana-Farber patients participating in CCSS that survivors had a strong tendency toward an enhanced self-appraisal and such bias had a differential effect on self-reported physical and emotional quality of life.…”

Section: Discussionmentioning

confidence: 99%

Psychosocial Outcomes and Health-Related Quality of Life in Adult Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study

Zeltzer

Lü²,

Leisenring³

et al. 2008

Cancer Epidemiology, Biomarkers &Amp; Prevention

390

421

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Purpose: Psychological outcomes, health-related quality of life (HRQOL), and life satisfaction are compared between 7,147 adult childhood cancer survivors and 388 siblings from the Childhood Cancer Survivor Study, examining demographic and diagnosis/treatment outcome predictors. Methods: Psychological distress, HRQOL, and life satisfaction were measured by the Brief Symptom Inventory-18, the Medical Outcomes Survey Short Form-36, and Cantril Ladder of Life, respectively. A self-report questionnaire provided demographic/health information and medical record abstraction provided cancer/treatment data. Siblings' and survivors' scores were compared using generalized linear mixed models, and predictor effects of demographic and cancer/treatment variables were analyzed by multivariate logistic regression. Results: Although survivors report greater symptoms of global distress (mean, 49.17; SE, 0.12) than do siblings (mean, 46.64; SE, 0.51), scores remain below population norms, indicating that survivors and siblings remain psychologically healthy. Survivors scored worse than siblings on overall physical (51.30 F 0.10 versus 54.98 F 0.44; P < 0.001) but not emotional aspects of HRQOL, but effect sizes were small, other than in vitality. Most survivors reported present (mean, 7.3; SD, 0.02) and predicted future (mean, 8.6; SD, 0.02) life satisfaction. Risk factors for psychological distress and poor HRQOL were female gender, lower educational attainment, unmarried status, annual household income <$20,000, unemployment, lack of medical insurance, having a major medical condition, and treatment with cranial radiation. IntroductionAdulthood is now attainable for most children treated for cancer with 5-year survival rates at 80% (1). Increased survival may be accompanied by long-term burden for some individuals related to the unique characteristics of their cancer diagnoses and treatment and the effect of treatment on their educational, psychological, and social development. Identification of subgroups of childhood cancer survivors at risk for poor health-related quality of life (HRQOL) is important for development of intervention strategies. As treatments evolve, determination of treatments promoting long-term survival and reduced risk for poor HRQOL outcomes will be a goal.Findings in survivors are often derived from singleinstitution oncology programs or long-term follow-up clinics and suggest that psychosocial status and HRQOL are relatively good for most survivors, yet less favorable outcomes have been reported (2-6). Childhood Cancer Survivor Study (CCSS) reports have examined psychosocial outcomes and HRQOL within specific diagnostic groups (7-11). However, it is necessary to examine the entire cohort of childhood cancer survivors, compare them with siblings, and identify demographic and treatment risk factors so that risk-based treatments to enhance HRQOL of life can be developed.This report describes psychosocial status, HRQOL, and life satisfaction in the CCSS cohort, compares findings to sibling controls ...

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Section: Discussionmentioning

confidence: 99%

Psychosocial Outcomes and Health-Related Quality of Life in Adult Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study

Zeltzer

Lü²,

Leisenring³

et al. 2008

Cancer Epidemiology, Biomarkers &Amp; Prevention

390

421

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“…19 It is important to note that previous studies of HRQOL in YASCC largely relied on quantitative data collected by existing instruments. 21,22 Theoretically, quantitative methods are useful for comparing HRQOL across subgroups of cancer survivors given the established framework or instruments with pre-specified domains of HRQOL (e.g., physical, psychological, and social functioning). 21,22 In contrast, qualitative methods allow for a more thorough exploration of the unique HRQOL issues for YASCC that have traditionally been neglected in quantitative instruments.…”

mentioning

confidence: 99%

“…21,22 Theoretically, quantitative methods are useful for comparing HRQOL across subgroups of cancer survivors given the established framework or instruments with pre-specified domains of HRQOL (e.g., physical, psychological, and social functioning). 21,22 In contrast, qualitative methods allow for a more thorough exploration of the unique HRQOL issues for YASCC that have traditionally been neglected in quantitative instruments. In other words, qualitative methods may facilitate a greater understanding of HRQOL for this population by allowing the researcher to identify and explore the domains of HRQOL that are relevant to this population.…”

mentioning

confidence: 99%

Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies

Nightingale

Quinn²,

Shenkman³

et al. 2011

Journal of Adolescent and Young Adult Oncology

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Purpose: The occurrence of late effects, combined with traditional growth and developmental issues, can significantly affect the health-related quality of life (HRQOL) of young adult survivors of childhood cancer (YASCC). Limited HRQOL measurement tools have been developed or validated for YASCC. The purpose of this study was to identify the domains of HRQOL that are unique to YASCC by conducting a systematic review of qualitative studies. Specifically, we compared the findings to the classical framework of HRQOL that was developed for survivors of adult-onset cancer and identified specific domains not being assessed in existing HRQOL instruments for YASCC. Methods: We searched qualitative studies published in peer-reviewed journals from 2000 to 2010 in the PsychINFO, PubMed, and EBSCOhost databases. A set of keywords and inclusion/ exclusion criteria were utilized to identify eligible studies with a focus on survivorship and HRQOL issues of YASCC. Results: Sixteen studies met the inclusion/exclusion criteria and were investigated in this study. Six important domains of HRQOL were identified (physical, social, psychological, spiritual, fertility/sexual, resilience, and body appearance) with several sub-domains. Conclusion: Use of the classical HRQOL framework and existing instruments is not comprehensive enough for YASCC. Adding unique domains to the classical framework and existing instruments will make them valuable tools for measuring the HRQOL of YASCC and increase health professionals' ability to identify if and when psychosocial services are needed for this unique population.

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“…Third, self-reported events and response bias can lead to underestimation of problems by denial of difficulties in the survivor population. 45 Additionally, we do not have the ability to assess the validity of the various outcomes included in the analysis, irrespective of whether the respondent was the survivor or a proxy. While CCSS investigators have had excellent success in validating selected outcomes, such as second malignancies, our success in achieving medical record validation for other major outcomes has been limited.…”

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confidence: 99%

Late-Occurring Neurologic Sequelae in Adult Survivors of Childhood Acute Lymphoblastic Leukemia: A Report From the Childhood Cancer Survivor Study

Goldsby

Liu

Nathan

et al. 2010

JCO

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A B S T R A C T PurposeChildren with acute lymphoblastic leukemia (ALL) are often cured, but the therapies they receive may be neurotoxic. Little is known about the incidence and severity of late-occurring neurologic sequelae in ALL survivors. Data were analyzed to determine the incidence of adverse long-term neurologic outcomes and treatment-related risk factors. Patients and MethodsWe analyzed adverse neurologic outcomes that occurred after diagnosis in 4,151 adult survivors of childhood ALL who participated in the Childhood Cancer Survivor Study (CCSS), a retrospective cohort of 5-year survivors of childhood cancer diagnosed between 1970 and 1986. A randomly selected cohort of the survivors' siblings served as a comparison group. Self-reported auditoryvestibular-visual sensory deficits, focal neurologic dysfunction, seizures, and serious headaches were assessed. ResultsThe median age at outcome assessment was 20.2 years for survivors. The median follow-up time to death or last survey since ALL diagnosis was 14.1 years. Of the survivors, 64.5% received cranial radiation and 94% received intrathecal chemotherapy. Compared with the sibling cohort, survivors were at elevated risk for late-onset auditory-vestibular-visual sensory deficits (rate ratio [RR], 1.8; 95% CI, 1.5 to 2.2), coordination problems (RR, 4.1; 95% CI, 3.1 to 5.3), motor problems (RR, 5.0; 95% CI, 3.8 to 6.7), seizures (RR, 4.6; 95% CI, 3.4 to 6.2), and headaches (RR, 1.6; 95% CI, 1.4 to 1.7). In multivariable analysis, relapse was the most influential factor that increased risk of late neurologic complications. ConclusionChildren treated with regimens that include cranial radiation for ALL and those who suffer a relapse are at increased risk for late-onset neurologic sequelae.

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The effects of response bias on self-reported quality of life among childhood cancer survivors

Cited by 75 publications

References 81 publications

Psychosocial Outcomes and Health-Related Quality of Life in Adult Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study

Psychosocial Outcomes and Health-Related Quality of Life in Adult Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study

Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies

Late-Occurring Neurologic Sequelae in Adult Survivors of Childhood Acute Lymphoblastic Leukemia: A Report From the Childhood Cancer Survivor Study

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