'Why us?' Causal attributions of childhood cancer survivors, survivors' parents and community comparisons - a mixed methods analysis.

INTRODUCTION: Understanding the cause of their cancer is important for many cancer patients. Childhood cancer survivors'/survivors' parents' beliefs about cancer etiology are understudied. We aimed to assess survivors'/parents' beliefs about what causes childhood cancer, compared with beliefs in the community. We also investigated the influence of clinical and socio-demographic characteristics on the participants' beliefs about cancer etiology. METHODS: This two-stage study investigated the participants' beliefs, by using questionnaires assessing causal attributions related to childhood cancer (stage 1) and then undertaking telephone interviews (stage 2; survivors/survivors' parents only) to get an in-depth understanding of survivors'/survivors' parents beliefs. We computed multivariable regressions to identify factors associated with the most commonly endorsed attributions: bad luck/chance, environmental factors and genetics. We analyzed interviews using thematic analysis. RESULTS: Six hundred one individuals (64.6% survivors and 35.4% survivors' parents) and 510 community comparisons (53.1% community adults, 46.9% community parents) completed the question on causal attributions. We conducted 87 in-depth interviews. Survivors/survivors' parents (73.9%) were more likely to believe that chance/bad luck caused childhood cancer than community participants (42.4%). Community participants more frequently endorsed that genetics (75.3%) and environmental factors (65.3%) played a major role in childhood cancer etiology (versus survivors' and survivors' parents: genetics 20.6%, environmental factors: 19.3%). Community participants, participants with a first language other than English, and reporting a lower quality of life were less likely to attribute bad luck as a cause of childhood cancer. Community participants, all participants with a higher income and higher education were more likely to attribute childhood cancer etiology to environmental factors. CONCLUSION: Causal attributions differed between survivors/survivors' parents and community participants. Most of the parents and survivors seem to understand that there is nothing they have done to cause the cancer. Understanding survivors' and survivors' parents' causal attributions may be crucial to address misconceptions, offer access to services and to adapt current and future health behaviors.

Grandparents of children with cancer: a controlled comparison of perceived family functioning.

PURPOSE: Grandparents can be profoundly emotionally affected when a grandchild is diagnosed with cancer. They also often provide invaluable support for the family (e.g., caring for the sick child and/or siblings). Multigenerational family functioning may therefore change. Limited research has assessed grandparents' perspectives after their grandchild is diagnosed with cancer. In this study, we aimed to (1) assess differences in perceived family functioning among grandparents of a child with cancer and grandparents of healthy children and (2) assess the cancer-specific and demographic factors related to perceived family functioning in grandparents of a grandchild with cancer. PROCEDURE: Grandparents of a child with cancer (n = 89) and grandparents of healthy children (n = 133) completed the general functioning, communication, and problem-solving scales of the Family Assessment Device. We used multilevel models with a random intercept to detect (1) between-group differences and (2) identify factors related to perceived family functioning among grandparents with a grandchild with cancer. RESULTS: Grandparents with a grandchild with cancer reported poorer family functioning than grandparents with healthy grandchildren. Among the grandparents with a grandchild with cancer, impairments in family functioning were correlated with fewer years since diagnosis, providing care to their sick grandchild and/or siblings and living far away from the sick grandchild. CONCLUSIONS: The detrimental impact of childhood cancer likely extends beyond the immediate family members. Including grandparents in interventions-beginning at diagnosis-to reduce distress and increase cohesion for families of a child with cancer is warranted, particularly for grandparents who provide care to their sick grandchild or siblings.

Grandparents of children with cancer: Quality of life, medication and hospitalizations.

BACKGROUND: Grandparents can play a crucial role of providing emotional and practical support for families facing childhood cancer. Yet, many have their own healthcare needs. This controlled study systematically assesses the impact of childhood cancer on grandparents' quality of life (QOL). Our objective was to compare QOL in grandparents of children with and without cancer and to identify factors associated with grandparents' QOL. PROCEDURE: Grandparents (N = 222) completed two patient-reported outcome (PRO) measures assessing QOL: EQ-5D-5L and WHOQOL-BREF. Secondary endpoints included sleep, medications and hospitalizations. We used independent samples t-tests and multivariate linear regression to assess between-group differences and identify predictors. RESULTS: Grandparents of children with cancer (n = 89) reported significantly worse QOL than controls (n = 133) [mean WHOQOL-BREF score: 75.6 (SD = 17.6) vs. 81.5 (15.6), P = 0.007; mean EQ-5D-5L index value: 0.777 (0.20) vs. 0.874 (0.14), P < 0.001)]. They also reported more problems with anxiety and depression (47.2 vs. 21.8%, P < 0.001) and pain (64.8 vs. 49.6%, P = 0.031). Grandparents of children with cancer reported taking longer to fall asleep [mean: 30.4 min (55.6) vs. 18.2 (20.2), P = 0.011] and taking more medications in the last 4 weeks [mean: 2.9 (SD = 3.8) vs. 1.8 (SD = 2.3), P = 0.012]. Hospitalizations were comparable across groups. Grandmothers, those living in urban locations, and retired/unemployed grandparents experienced reduced QOL. CONCLUSIONS: Grandparents are significantly affected by childhood cancer. The impact appears across many domains of life and results in meaningful QOL differences. Given that four or more individuals may be affected per child, and that grandparent well-being can influence the whole family, interventions targeting at-risk grandparents are needed.

The Avatar Acceptability Study: Survivor, Parent and Community Willingness to Use Patient-Derived Xenografts to Personalize Cancer Care.

BACKGROUND: Using patient-derived xenografts (PDXs) to assess chemosensitivity to anti-cancer agents in real-time may improve cancer care by enabling individualized clinical decision-making. However, it is unknown whether this new approach will be met with acceptance by patients, family and community. METHODS: We used a cross-sectional structured survey to investigate PDX acceptability with 1550 individuals across Australia and New Zealand (648 survivors of adult and childhood cancer, versus 650 community comparisons; and 48 parents of childhood cancer survivors versus 204 community parents). We identified factors influencing willingness-to-use PDXs, willingness-to-pay, maximum acceptable wait-time, and maximum acceptable number of mice used per patient. FINDINGS: PDXs were highly acceptable: >80% of those affected by cancer felt the potential advantages of PDXs outweighed the disadvantages (community participants: 68%). Survivors' and survivors' parents' most highly endorsed advantage was 'increased chance of survival'. 'Harm to animals' was the least endorsed disadvantage for all groups. Cancer survivors were more willing to use PDXs than community comparisons [p < ·001]. Survivors and survivors' parents were willing to pay more [p < ·001; p = ∙004 respectively], wait longer for results [p = ·03; p = ∙01], and use more mice [p = ·01; p < ∙001] than community comparisons. Male survivors found PDXs more acceptable [p = ·01] and were willing to pay more [p < ·001] than female survivors. Survivors with higher incomes found PDXs more acceptable [p = ·002] and were willing to pay more [p < ·001] than survivors with lower incomes. Mothers found PDXs more acceptable [p = ·04] but were less willing to wait [p = ·02] than fathers. INTERPRETATION: We found significant attitudinal support for PDX-guided cancer care. Willingness-to-pay and maximum acceptable number of mice align well with likely future usage. Maximum acceptable wait-times were lower than is currently achievable, highlighting an important area for future patient education until technology has caught up.