Childhood brain cancer and its psychosocial impact on survivors and their parents: A qualitative thematic synthesis

Woodgate, Roberta L.; Tailor, Ketan; Yanofsky, Rochelle; Vanan, Magimairajan Issai

doi:10.1016/j.ejon.2015.07.004

Cited by 51 publications

(56 citation statements)

References 37 publications

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“…Reviews, commentaries, case studies, or qualitative studies were excluded. Although qualitative studies can provide valuable insights into children's self‐perceptions, these require a different approach to synthesis and quality appraisal. Further, studies were excluded if SWB was assessed using a single item or non‐validated measure (as determined during full‐text review).…”

Section: Methodsmentioning

confidence: 99%

“…Studies have shown that parents of children with cancer often report more severe illness burden than perceived by their children . Qualitative research suggests that children with brain tumor are able to express the everyday effects of their illness . To understand the subjective impact of the illness, it is important to obtain children's own accounts of SWB through validated self‐report measures of mental health and QOL.…”

Section: Introductionmentioning

confidence: 99%

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A systematic review of factors related to children's quality of life and mental health after brain tumor

et al. 2018

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

A systematic review of factors related to children's quality of life and mental health after brain tumor

et al. 2018

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“…The group that was adversely affected were those with brain tumours regardless of age of onset and particularly females, who were less likely to be in EET. This has been previously shown and is likely to be due in part to the neurocognitive sequelae as a direct consequence of having a brain tumour and intensity of cancer treatment including radiotherapy …”

Section: Discussionmentioning

confidence: 74%

“…This has been previously shown and is likely to be due in part to the neurocognitive sequelae as a direct consequence of having a brain tumour and intensity of cancer treatment including radiotherapy. [20][21][22] The later year (rather than age) of diagnosis, that is, being diagnosed more recently had a positive impact on all outcomes but particularly EET which may reflect improved medical care and/or support provided in education. This was also identified in the meta-analysis, and later publications had less reduction in income compared with healthy peers.…”

Section: Discussionmentioning

confidence: 99%

Social, educational and vocational outcomes in patients with childhood‐onset and young‐adult‐onset growth hormone deficiency

Mitra

Jönsson

Åkerblad

et al. 2017

Clinical Endocrinology

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Disclosure statement: M.K.-H. and A.-C.A. were and P.J. is full-time employees of Pfizer Health AB.MKH is a consultant to Versartis Inc. M.K. has received research support from Pfizer, Novartis and Ipsen and speaker honoraria from Pfizer and is a member of the KIMS Steering Committee. AbstractObjective: Hypopituitarism diagnosed in childhood, adolescence and young adulthood has the potential to affect growth and somatic development. Less is known about the impact of such a diagnosis on other aspects of development.Design: An analysis of the KIMS Database (Pfizer International Metabolic Database) was performed to explore social, educational and vocational outcomes of adult patients diagnosed in childhood, adolescence and young adulthood compared with adult-onset controls.Patients: 2952 adult patients diagnosed with hypothalamic pituitary conditions before the age of 25 were divided into 2 group: childhood-onset [<16 years (CO)] (n= 1782) and young-adult-onset [16-<25years (YAO)] (n=1170). 1617 adult patients diagnosed with a non functioning pituitary adenoma at the age of 25 or older formed the adult-onset control group (AO). Measurements: KIMS Patient Life Situation Form which provided information on: social, educational and vocational outcomes.Results: Compared with the AO control group CO and YAO patients were between 4.5 and 8.0 times more likely to live with their parents in adulthood, CO and YAO patients were also less likely to live in partnership and to have children. The impact on educational and vocational outcomes was less marked than on social outcomes with no significant differences compared with the AO control group. Educational and vocational outcomes showed the lowest level in male and female CO and YAO patients who had been previously diagnosed with a brain tumour.Conclusions: Social outcomes were more affected than educational and vocational outcomes. Although CO patients are more adversely affected, YAO patients were also failing to achieve social milestones. This has consequences for the delivery of endocrine care in both paediatric and adult services.

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“…In general, parents of childhood cancer survivors report an absence of adverse changes in the family environment [26]. Some parents of brain tumor survivors report deterioration of the family environment including marital relations and marginalization of family members including healthy siblings [27]. The burden of chronic health conditions and neurocognitive deficits in the survivor may also lead to greater family impact as the parents struggle to deal with time and financial constraints placed upon them due to a need for ongoing survivor care [28].…”

Section: Discussionmentioning

confidence: 99%

Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors

Buchbinder

Fortier

Osann³

et al. 2017

Journal of Pediatric Hematology/Oncology

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We aimed to describe the quality of life (QOL) among parents of adolescent and young adult (AYA) brain tumor survivors as well as parent, survivor, and diagnosis/treatment-related factors associated with adverse QOL. A cross-sectional study of 28 parents of AYA brain tumor survivors (who were on average 10 years post-diagnosis) was used to assess QOL. Parent QOL was measured using the Patient-Reported Outcomes Measurement Information System Global Health measure. Factors associated with adverse parent QOL were explored using logistic regression including: parent, survivor, and diagnosis/treatment-related factors. Parent QOL was within the normal range; however, 40% scored below the clinical threshold of 0.5 SD below the mean for physical and mental health. Parent perceptions of greater family impact, survivor emotional/behavioral health problems, improved cognitive function, and recurrence were associated with adverse parent physical health. Parent anger/sorrow, uncertainty, survivor emotional/behavioral health problems, speech/language problems, and recurrence were associated with adverse parent mental health. Parental emotional resources and perceptions of improved survivor peer relationships were associated with greater parent physical and mental health. The impact of a brain tumor diagnosis and treatment on the QOL of parents may be significant. Interventions are needed to ensure that the needs of parents are met.

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Childhood brain cancer and its psychosocial impact on survivors and their parents: A qualitative thematic synthesis

Cited by 51 publications

References 37 publications

A systematic review of factors related to children's quality of life and mental health after brain tumor

A systematic review of factors related to children's quality of life and mental health after brain tumor

Social, educational and vocational outcomes in patients with childhood‐onset and young‐adult‐onset growth hormone deficiency

Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors

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