The Impact of Pediatric Chronic Pain on Parents' Health-Related Quality of Life and Family Functioning: Reliability and Validity of the PedsQL 4.0 Family Impact Module

Objectives Existing treatments for pediatric EoE effectively reduce inflammation. However, impact of treatment on health-related quality of life (HRQoL) over time for pediatric patients with EoE and their families has not been systematically assessed. We hypothesized that individualized multidisciplinary treatment would improve both child and family HRQoL over time, with improvements associated with decreased symptom severity. Methods Children with EoE treated in 4 tertiary care centers were enrolled. Baseline assessments occurred at the time of patients’ first evaluation; follow-up assessments occurred at 2 and 6 months after baseline. Presence and severity of 8 EoE symptoms were measured. HRQoL was measured with the PedsQL parent proxy-report (PR), child self-report (CR), and Family Impact Module (FIM). Statistical analyses used mixed-effects modeling to test changes over time for child and family HRQoL. Results Ninety-seven children were enrolled (ages 2–18 years; mean age, 7.7 yrs +/− 4.8 y; 78% male; 80% Caucasian). Baseline mean symptom number was 3.5 (SD, 2.3) and symptom severity was 5.5 (SD, 4.5). HRQoL scores were significantly related to symptom scores (P < 0.001). EoE symptom severity decreased during the study (P=0.03). PR PedsQL Total and FIM Total scores improved from baseline to 6 months (respectively, adjusted means 78.4 vs 81.0, P=0.0006; 68.9 vs 70.1, P=0.03). Interactions with baseline symptom severity revealed that subjects with lowest symptom severity showed the most improved HRQoL scores (P=0.0013). Conclusions HRQoL improved during the course of evaluation and treatment, with positive changes being strongest for patients with less symptom severity at baseline.

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“…This is consistent with other studies of pediatric chronic illness that report a strong association between symptoms and diminished QoL. 13, 30 …”

Section: Discussionsupporting

confidence: 92%

Health‐Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Klinnert

Silveira

Harris

et al. 2014

J. pediatr. gastroenterol. nutr.

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“…Physical HRQL scores were calculated by averaging the 6 items of physical functioning and psychosocial HRQL scores were calculated by averaging the 14 items across emotional, social, and cognitive domains. The PedsQL FIM is well-validated and has been used in studies of parental HRQL in pediatric chronic pain (Jastrowski Mano, Khan, Ladwig, & Weisman, 2011), ADHD (Limbers, Ripperger-Suhler, Boutton, Ransom, & Varni, 2011), sickle cell (Panepinto, Hoffmann, & Pajewski, 2009), and disabled populations (Isa et al, 2013). The Cronbach alpha was .92 for the physical HRQL score and .94 for the psychological HRQL score.…”

Section: Methodsmentioning

confidence: 99%

Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy

Quast

Turner

McCurdy

et al. 2016

Journal of Psychosocial Oncology

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“…However, parents’ scores on this tool were similar to those previously reported, so it is unlikely that this will substantially impact our findings. 41,74,75,83 …”

Section: Discussionmentioning

confidence: 99%

Design and baseline data from a PCORI-funded randomized controlled trial of family-centered tailoring of diabetes self-management resources

Fiallo‐Scharer

Palta

Chewning

et al. 2017

Contemporary Clinical Trials

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This article describes the methodology, recruitment, participant characteristics, and sustained, intensive stakeholder engagement for Project ACE (Achieving control, Connecting resources, Empowering families). Project ACE is a randomized controlled trial of children and youth ages 8–16 with type 1 diabetes evaluating the impact of tailored self-management resources on hemoglobin A1c (A1c) and quality of life (QOL). Despite strong evidence that controlling A1c reduces long-term complications, <25% of US youth with type 1 diabetes meet A1c targets. Many interventions are efficacious in improving A1c and QOL for these youth, whose families often struggle with the substantial demands of the treatment regimen. However, most such interventions are ineffective in the real world due to lack of uptake by families and limited healthcare system resources. Project ACE is a multi-site trial designed to improve diabetes outcomes by tailoring existing, evidence-based interventions to meet families’ needs and preferences. We hypothesize that this family-centered approach will result in better A1c and QOL than usual care. Project ACE has recruited and randomized 214 eligible 8–16 year old youth and their parents. The 9-month intervention consisted of 4 group sessions tailored to families’ self-management barriers as identified by a validated instrument. Outcomes including A1c and QOL for parents and youth will be assessed for 1 year after the intervention. Stakeholder engagement was used to enhance this trial’s recruitment, retention and integration into routine clinical care. Findings will inform implementation and dissemination of family-centered approaches to address self-management barriers.

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The Impact of Pediatric Chronic Pain on Parents' Health-Related Quality of Life and Family Functioning: Reliability and Validity of the PedsQL 4.0 Family Impact Module

Abstract: The FIM appears to be a suitable measure of parent self-reported HRQOL and family functioning in pediatric chronic pain.

Cited by 81 publications

References 39 publications

Health‐Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Health‐Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy

Design and baseline data from a PCORI-funded randomized controlled trial of family-centered tailoring of diabetes self-management resources

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