Participation in psychosocial oncology and quality-of-life research: a systematic review

Wakefield, Claire E.; Fardell, Joanna E.; Doolan, Emma L.; Aaronson, Neil K.; Jacobsen, Paul B.; Cohn, Richard J.; King, Madeleine

doi:10.1016/s1470-2045(17)30100-6

Cited by 71 publications

(76 citation statements)

References 73 publications

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“…First, the response rate of the larger study (36%) was lower than that of other psycho‐oncological studies . This low response rate might be due to the dyadic and intensive longitudinal design of our study.…”

Section: Discussionmentioning

confidence: 70%

The reciprocal relationship between daily fatigue and catastrophizing following cancer treatment: Affect and physical activity as potential mediators

et al. 2017

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This study provides evidence for a mutually reinforcing relationship between catastrophizing and fatigue in daily life, which might explain the perpetuation of fatigue after completion of cancer treatment. Fatigue-specific cognitive behavior therapy could be improved by educating patients about this daily reciprocal relationship, train them to quickly replace catastrophizing thoughts in daily life, and help them to cope with affective changes induced by fatigue.

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Section: Discussionmentioning

confidence: 70%

The reciprocal relationship between daily fatigue and catastrophizing following cancer treatment: Affect and physical activity as potential mediators

et al. 2017

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“…Although generalizability is not typically the aim of qualitative research, there is a need to better understand the experiences of families from diverse backgrounds and within other healthcare systems. Males were also underrepresented in our sample, which is common to psychosocial oncology research …”

Section: Discussionmentioning

confidence: 99%

“I remember how I felt, but I don't remember the gene”: Families’ experiences of cancer‐related genetic testing in childhood

McGill

Wakefield

Vetsch

et al. 2019

Pediatric Blood & Cancer

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Background Genetic testing in children for hereditary cancer predisposition syndromes (CPSs) involves unique psychosocial and family‐systems considerations. This retrospective study explored the perspectives and emotional reactions of parents and young adults about cancer‐related genetic counseling and testing offered to children in the family. Methods Families were eligible if they had considered genetic testing for a child (≤18 years) within the family. Parents and young adults ≥16 years participated in semistructured interviews that we coded and identified key themes. We also quantitively assessed emotional distress, quality of life, impact of receiving genetic cancer risk information, and service‐related satisfaction. Results From 35 interviews (26 parents, nine young adults), we identified themes spanning families’ experiences from referral to genetic services to the longer term impact of receiving information about family cancer risk from testing of children. Supported by quantitative data, families generally described positive experiences of genetic services and reported benefits to genetic testing. Nevertheless, families faced unique emotional and relational challenges that changed over the family lifecycle. Those challenges differed according to whether the child was asymptomatic or had a cancer diagnosis at testing. Parents of children with cancer described genetic consultations as a secondary concern to the immediate stressors of their child's treatment. Conclusions We conclude that the successful integration of cancer genetics into pediatric cancer care requires specialist pediatric genetic counseling and psychosocial support services that are able to respond to families’ changing needs.

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“…The only variable in which respondents and nonrespondents differed was time since diagnosis (3 months) and this variable was barely of influence on HRQoL. Future studies should consider face to face recruitment and the use of short questionnaires, since these strategies seem to improve response rates in pediatric oncology . Fourth, we did not take into account the potential mediating effects of variables, and we could not include all variables that are known to influence parental HRQoL, such as child behavior, coping strategies, and family function.…”

Section: Discussionmentioning

confidence: 99%

Gender‐specific differences in parental health‐related quality of life in childhood cancer

Rensen

Steur

Schepers

et al. 2019

Pediatric Blood & Cancer

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Background Parents of children with cancer are at risk for impaired health‐related quality of life (HRQoL). Most prior research has focused on the HRQoL of mothers. The aim of this study is to describe HRQoL in mothers and fathers, and determine the influence of sociodemographic, medical, and psychosocial factors. Procedure In a cross‐sectional study, both parents completed questionnaires on sociodemographics, distress, and HRQoL. Parental HRQoL was compared to healthy population values. Differences between mothers and fathers were evaluated with multilevel analysis. Gender‐specific HRQoL determinants were assessed via multiple linear regression analysis. Results Parents (202 mothers, 150 fathers; comprising 121 couples) of 231 children with different cancer diagnoses (mean time since diagnosis 3.3 ± 1.4 years, 90% posttreatment) participated. Compared to healthy women and men, mothers and fathers reported significantly impaired HRQoL on the following domains: cognitive functioning, sleep, daily activities, and vitality (Cohen's d = 0.3‐0.9). Additionally, maternal HRQoL was reduced on the domains gross motor functioning, pain, social functioning, sexuality, and depressive emotions. Mothers scored worse than fathers on six of 12 domains. Risk factors for adverse outcomes in both parents were higher distress, emotional and parenting problems, little social support, medication use, and active treatment of the child. Other determinants in mothers were non‐Dutch background and unemployment, while lower HRQoL in fathers was predicted by their child's diagnosis type, shorter time since diagnosis, and treatment intensity. Conclusion These outcomes illustrate the need for family‐centered care. Future interventions aimed at improving parental functioning should take into account gender‐specific differences in HRQoL to reach optimal efficacy.

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Participation in psychosocial oncology and quality-of-life research: a systematic review

Cited by 71 publications

References 73 publications

The reciprocal relationship between daily fatigue and catastrophizing following cancer treatment: Affect and physical activity as potential mediators

The reciprocal relationship between daily fatigue and catastrophizing following cancer treatment: Affect and physical activity as potential mediators

“I remember how I felt, but I don't remember the gene”: Families’ experiences of cancer‐related genetic testing in childhood

Gender‐specific differences in parental health‐related quality of life in childhood cancer

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