Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer. Cancer 2020;126:701-716.

Background Parents of children with cancer desire information about late effects of treatment. We assessed parents’ preparedness for late effects at least 5 years after their child's diagnosis. Methods We conducted a cross-sectional survey of all eligible parents of children with cancer between April 2004 and September 2005 at Dana-Farber/Boston Children's Cancer and Blood Disorders Center within a year of diagnosis, and administered a follow-up questionnaire at least 5 years later. Results 66% of parents of children who were still living, and whom we were able to contact, completed the follow-up questionnaire (n=91/138). 77% (70/91) of respondents were parents of disease-free survivors; 23% (21/91) were parents of children with relapsed disease. Most parents felt well prepared for their child's oncology treatment (87%), but fewer felt prepared for future limitations experienced by their children (70%, p=0.003, McNemar's test) or for life after cancer (62%, p<0.001). In bivariable analysis among parents of disease-free survivors, parents were more likely to feel prepared for future limitations when they also reported that communication with the oncologist helped address worries about the future (OR 4.50, p=0.01). At diagnosis, both parents and physicians underestimated a child's risk of future limitations; 45% of parents and 39% of clinicians predicted future limitations in physical abilities, intelligence or quality of life, but more than 5 years later 72% of children experienced limitations in at least one domain. Conclusions Parents feel less prepared for survivorship than for treatment. High-quality communication may help parents feel more prepared for life after cancer therapy.

BACKGROUND: Parents of children with cancer have unmet information needs about future limitations resulting from cancer or its treatment. Prior research shows that clinicians focus on acute effects of therapy rather than long-term limitations in early care discussions, partly due to worries of causing distress. The validity of concerns about distress is unknown. We evaluated parental distress associated with information about future limitations, and the extent to which distress is associated with information preferences. METHODS: We surveyed 355 parents of children with cancer within 3 months of diagnosis, and the children’s physicians, at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and Children’s Hospital of Philadelphia. Our primary outcome was parental distress associated with information about long-term limitations. RESULTS: 46% of parents found information about future limitations to be extremely or very upsetting. In multivariate analysis, parents were more likely to consider information about future limitations distressing if they also found prognostic information upsetting (OR 5.36, p<0.001), struggled to accept their child’s illness (OR 2.57, p<0.001), or had depression (OR 1.79, p=0.01). However, 92% of parents considered information about potential future limitations to be extremely/very important. Those who found information about future limitations distressing were more likely to consider it important (96% vs 89%, p=0.03), and to desire a precise understanding of their child’s risks (92% vs 80%, p=0.001). CONCLUSION: Though information about future limitations caused by cancer treatment is upsetting to many parents, most parents desire this information, and those who are distressed are more likely to value this information.