Participation rates of childhood cancer survivors to self-administered questionnaires: a systematic review

Kilsdonk, Ellen; Wendel, Eva-Maria; Broeder, Eline van Dulmen‐den; Leeuwen, Flora E. van; Berg, Marleen H van den; Jaspers, Monique W. M.

doi:10.1111/ecc.12462

Cited by 22 publications

(28 citation statements)

References 59 publications

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“…The response rate in studies of this population in the literature is as low as 49 and 43.6% as reported by Rosoff et al ( 34 ), 47% by McClellan et al ( 35 ), and 47.5% by Casagranda et al ( 36 ) and Gianinazzi et al ( 37 ). Response rates as low as 45% or even 39% were obtained in some studies dealing with topics of quality of life or health, respectively [( 38 ), p. 4], which resemble the themes in the present study.…”

Section: Methodssupporting

confidence: 84%

Psychosocial Outcomes of Sharing a Diagnosis of Cancer with a Pediatric Patient

2016

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PurposeThis innovative pilot study was designed to provide research-based evidence on the variables to consider informing a child of his/her cancer diagnosis, so as to minimize the negative psychosocial effects of the cancer experience on survivors. The hypotheses of the study were that “good information” about cancer, will allow the child a better understanding way to cope with treatment and improve sociopsychological outcomes at adulthood.MethodsNinety-one adult childhood cancer (CC) survivors got the questionnaires while waiting to their routine checkup at a grate CC medical center in center Israel.ResultsTo our surprise and not according to the hypothesis, there was a difference between children diagnosed up to 12 years of age and those diagnosed during adolescence. (Participants were divided into two groups according to their age at diagnosis: from birth to 12 years old and from age 12–18). In the group diagnosed at a younger age, those who had received “good information” were found to have better quality of life, lower mental pain, and higher mental pain tolerance than did those in the same group (diagnosed at a younger age) who received “not good information.” By contrast, in the group diagnosed during adolescence, those who had received “not good information” scored higher on these measures than did their counterparts who had received “good information.”ConclusionGiven that information conveyed to children diagnosed with cancer can have a significant impact on survivors’ quality of life, further research is needed to determine the precise information to be divulged to children at the time of diagnosis. In the meantime, extreme caution, sensitivity, and careful judgment are required.Clinical relevanceFindings of the current study and of future studies can be used to formulate clear guidelines for assessing a child’s readiness and the information to be divulged, so as to improve the quality of life of CC survivors.

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Section: Methodssupporting

confidence: 84%

Psychosocial Outcomes of Sharing a Diagnosis of Cancer with a Pediatric Patient

2016

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“…may perceive a lower commitment or motivation to participate in research. Other potential reasons for nonparticipation may include the time burden to complete the relative comprehensive questionnaire, avoidance of unpleasant memories, lack of perceived relevance due to the long time since diagnosis, or the general decline in participation rates over the last decades 30. However, our nonresponder analysis revealed no significant differences according to cancer-related characteristics such as diagnosis or treatment.…”

mentioning

confidence: 68%

“…reported in a recent systematic review on studies including childhood cancer survivors. 30 Our study directly approached the parents who This enabled a detailed evaluation of the parental relationship from both, the mothers' and fathers' perspective. should be identified early in the cancer trajectory and offered additional guidance in order to optimize parent, child, and family outcomes in the long term.…”

Section: Study Limitationsmentioning

confidence: 99%

Relationship status and quality of the partner relationship in parents of long‐term childhood cancer survivors: The Swiss Childhood Cancer Survivor Study‐Parents

et al. 2018

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Objective: The intensive and long-lasting experience of childhood cancer is a tremendous stressor for the parental relationship. We aimed to (1) compare civil status and partner relationship of parents of long-term childhood cancer survivors with population-based comparisons, (2) identify cancer-related characteristics associated with not being married, and (3) evaluate the quality of the partner relationship. Methods:We sent questionnaires to parents of survivors aged ≤16 years at diagnosis and ≥20 years at study. Population-based comparisons were derived from a random sample of the general population (≥1 child aged ≥20 years) and standardized by sociodemographic characteristics of survivor parents. We used logistic regression to identify cancer-related characteristics associated with not being married. The quality of the partner relationship was evaluated using the relationship-specific attachment scale for adults assessing the dimensions security (secure-fearful) and dependency (dependent-independent).Results: A total of 784 parents (58.9% mothers) of 512 survivors (response rate: 44.0%) and 471 comparison parents completed the questionnaire. Parents of survivors were less often divorced/separated (9.0% vs 17.5%, P < 0.001) and more often in a partner relationship (89.9% vs 85.0%, P = 0.010) than comparisons. Not being married was not associated with cancer-related characteristics. Parents of survivors reported similar security (P = 0.444) but higher dependency (P = 0.032) within the partner relationship than comparisons. In both populations, fathers indicated higher security and dependency than mothers.Conclusions: Long after the diagnosis of cancer in their child, parents' relationship appears similar as in parents of the general population. The increased dependency reported by parents of survivors suggests that they managed their child's disease as a team.

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“…[59] and 47.5% by Casagranda et al [60], and Gianinazzi et al [61]. A recent review [62] presents further similar examples. Notably, response rates as low as 45% or even 39% were obtained in some studies dealing with topics of quality of life or health, respectively [62] which resemble the themes in the present study.…”

Section: Discussionmentioning

confidence: 72%

“…A recent review [62] presents further similar examples. Notably, response rates as low as 45% or even 39% were obtained in some studies dealing with topics of quality of life or health, respectively [62] which resemble the themes in the present study. The issue of low response rates needs to be studied in order to be better understood and for getting improved response rates.…”

Section: Discussionmentioning

confidence: 82%