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Trajectories of child and caregiver psychological adjustment in families of children with cancer.

ABSTRACT: OBJECTIVE:To describe the trajectory of patient and caregiver mental health from diagnosis through the first year of treatment for pediatric cancer and assess whether rates of clinically relevant symptoms were elevated compared with norms. We examined mean levels of internalizing and externalizing symptoms and posttraumatic stress symptoms (PTSS) in children with cancer, and depression, anxiety, and PTSS in caregivers during the first year of treatment; the proportion of patients and caregivers that scored in the clinical range at each time point; and the typical trajectory of symptoms in patients and caregivers and whether trajectories differed between individuals. METHOD:Families (N = 159) of children newly diagnosed with cancer (Mage = 5.6 years; range = 2-18 years) participated in a short-term prospective study. Primary caregivers provided monthly reports of their own and their children's psychological adjustment. RESULTS:On average, children were well-adjusted. However, compared with norms, there was a higher than expected proportion of children with clinically relevant internalizing symptoms around the time of diagnosis. On average children's symptoms declined over time, though variability was observed. Caregivers were less well-adjusted on average, with a high proportion reporting clinically relevant symptoms over time for depression and anxiety. Caregiver symptoms also declined over time, though considerable variability was observed. CONCLUSION:Although most children remain well-adjusted during the first year of treatment, many caregivers experience clinically relevant symptoms of psychological distress. Implications for development of interventions targeting at-risk patients and caregivers are discussed. Identifying processes that predict between-family variability in trajectories of psychopathology is an important next step. (PsycINFO Database Record

SUBMITTER: Katz LF

PROVIDER: S-EPMC6091867 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Trajectories of child and caregiver psychological adjustment in families of children with cancer.

Katz Lynn Fainsilber LF Fladeboe Kaitlyn K King Kevin K Gurtovenko Kyrill K Kawamura Joy J Friedman Debra D Compas Bruce B Gruhn Meredith M Breiger David D Lengua Liliana L Lavi Iris I Stettler Nicole N

Health psychology : official journal of the Division of Health Psychology, American Psychological Association 20180801 8

<h4>Objective</h4>To describe the trajectory of patient and caregiver mental health from diagnosis through the first year of treatment for pediatric cancer and assess whether rates of clinically relevant symptoms were elevated compared with norms. We examined mean levels of internalizing and externalizing symptoms and posttraumatic stress symptoms (PTSS) in children with cancer, and depression, anxiety, and PTSS in caregivers during the first year of treatment; the proportion of patients and car ...[more]

PMID: 30024229

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Project description:ImportanceAdult patients are considered the best reporters of their own health-related quality of life (HRQOL). Self-report in pediatrics has been challenged by a limited array of valid measures. Caregiver report is therefore often used as a proxy for child report.ObjectivesTo examine the degree of alignment between child and caregiver proxy report for Patient-Reported Outcomes Measurement Information System (PROMIS) HRQOL domains among children with cancer and to identify factors associated with better child and caregiver-proxy congruence.Design, setting, and participantsIn this multicenter cohort study, children with a first cancer diagnosis and their caregivers completed surveys at 2 time points: within 72 hours preceding treatment initiation (T1) and during follow-up (T2), when symptom burden was expected to be higher (eg, 7-17 days later for chemotherapy). Data were collected from October 26, 2016, to October 5, 2018, at 9 pediatric oncology hospitals. Five hundred eighty children (aged 7-18 years) and their caregivers were approached; 482 child-caregiver dyads completed surveys at T1 (response rate 83%), and 403 completed surveys at T2 (84% of T1 participants). Data were analyzed from July 1, 2019, to April 22, 2020.ExposuresParticipants received up-front cancer treatment, including chemotherapy and radiotherapy.Main outcomes and measuresCongruence between child self-report and caregiver-proxy report of PROMIS pediatric domains of mobility (physical functioning), pain interference, fatigue, depressive symptoms, anxiety, and psychological stress.ResultsOf the 482 dyads included in the analysis, 262 children (54%) were male (mean [SD] age, 12.9 [3.4] years), 80 (17%) were Black, and 71 (15%) were Hispanic. Intraclass correlations between child self-report and caregiver proxy report showed moderate agreement for mobility (0.57 [95% CI, 0.50-0.63]) and poor agreement for symptoms (range, 0.32 [95% CI, 0.24-0.41] for fatigue to 0.42 [95% CI, 0.34-0.50] for psychological stress). Children reported lower symptom burden and higher mobility than caregivers reported. In a multivariable model adjusted for child and parent sociodemographic factors and the caregiver's own self-reported HRQOL, caregivers reported the child's mobility score 6.00 points worse than the child's self-report at T2 (95% CI, -7.45 to -4.51), exceeding the PROMIS minimally important difference of 3 points. Caregivers overestimated the child's self-reported symptom levels, ranging from 5.79 (95% CI, 3.99-7.60) points for psychological stress to 13.69 (95% CI, 11.60-15.78) points for fatigue. The caregiver's own self-reported HRQOL was associated with the magnitude of difference between child and caregiver scores for all domains except mobility; for example, for fatigue, the magnitude of difference between child and caregiver-proxy scores increased by 0.21 (95% CI, 0.13-0.30) points for each 1-point increase in the caregiver's own fatigue score.Conclusions and relevanceThis study found that caregivers consistently overestimated symptoms and underestimated mobility relative to the children themselves. These results suggest that elicitation of the child's own report should be pursued whenever possible.

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Trajectories of child and caregiver psychological adjustment in families of children with cancer.

Publications

Trajectories of child and caregiver psychological adjustment in families of children with cancer.

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