Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team

Weaver, Meaghann S.; Wichman, Christopher; Darnall, Cheryl; Bace, Sue; Vail, Catherine; Macfadyen, Andrew

doi:10.1089/jpm.2017.0092

Cited by 32 publications

(19 citation statements)

References 8 publications

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“…The mean PedsQL FIM score (instrument score range 1‐100, with higher score meaning better family well‐being) at time of hospice enrollment was 46.4 (SD 18.7), with noted increase in family impact scores (improved family function) over the first three timepoints to 49.8 (SD 11.9) at Timepoint 2 and 50.7 (SD 6.9) at Timepoint 3. While this is not a statistically significant change, it is notably a clinically relevant change 32 …”

Section: Resultsmentioning

confidence: 84%

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care

Weaver

Shostrom

Neumann

et al. 2021

Pediatric Blood & Cancer

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Background Children with terminal cancer and their families describe a preference for home‐based end‐of‐life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric‐trained hospice providers. Methods The purpose of this longitudinal palliative telehealth support pilot study was to explore physical and emotional symptom burden and family impact assessments for children with terminal cancer receiving home based‐hospice care. Each child received standard of care home‐based hospice care from an adult‐trained rural hospice team with the inclusion of telehealth pediatric palliative care visits at a scheduled minimum of every 14 days. Results Eleven children (mean age 11.9 years) received pediatric palliative telehealth visits a minimum of every 14 days, with an average of 4.8 additional telehealth visits initiated by the family. Average time from enrollment to death was 21.6 days (range 4‐95). Children self‐reported higher physical symptom prevalence than parents or hospice nurses perceived the child was experiencing at time of hospice enrollment with underrecognition of the child's emotional burden. At the time of hospice enrollment, family impact was reported by family caregivers as 46.4/100 (SD 18.7), with noted trend of improved family function while receiving home hospice care with telehealth support. All children remained at home for end‐of‐life care. Conclusion Pediatric palliative care telehealth combined with adult‐trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home‐based hospice care.

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Section: Resultsmentioning

confidence: 84%

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care

Weaver

Shostrom

Neumann

et al. 2021

Pediatric Blood & Cancer

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“…In the PedsQL scale, a change of 5 in the Standard Error of the Mean (SEM) has been pre-determined to represent a minimally clinically important difference [ 17 , 18 ]. Thus, while noted change did not reach statistical significant difference when the at-large group was analyzed, MCID was reached for communication and family resources according to child self-report.…”

Section: Discussionmentioning

confidence: 99%

Quality of Life Outcomes According to Differential Nusinersen Exposure in Pediatric Spinal Muscular Atrophy

et al. 2021

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The purpose of this study was to explore early changes in patient and family caregiver report of quality of life and family impact during the transitional period of nusinersen use. Communication; family relationships; physical, emotional, social, and cognitive functioning; and daily activities were measured using Pediatric Quality of Life modules (Family Impact Modules and both Patient and Proxy Neuromuscular-Specific Reports) pre- and post-nusinersen exposure. A total of 35 patients with SMA (15 Type 1, 14 Type 2, and 6 Type 3) were grouped according to nusinersen exposure. When analyzed as a whole cross-sectional clinical population, no significant differences were found between the initial and final surveys. Nusinersen therapy was associated with improved communication and emotional functioning in subsets of the population, particularly for patients on maintenance therapy for longer duration. Several unexpected potentially negative findings including increases in family resources and trends towards increases in worry warrant further consideration. Further research is warranted to explore the impact of novel pharmaceuticals on quality of life for children with SMA longitudinally to optimize clinical and psychosocial outcomes.

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“…This study is the first to use PedsQL FIM 2.0 to study families with children with DMD. PedsQL FIM has been used to study the impact of family on children for whom palliative care teams (Weaver et al, 2018) are monitoring for progress and of other common neurological problems such as global developmental delay or traumatic brain injury (de Kloet et al, 2015; Hsieh et al, 2013). However, it has never been used to study families affected by DMD.…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families

Liang

Chan

et al. 2019

J Child Health Care

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This study aims to assess the family functioning and health-related quality of life (HRQOL) in Chinese boys with Duchenne muscular dystrophy (DMD) and their parents using Pediatric Quality-of-Life Family Impact Module ( PedsQL FIM) and Pediatric Quality-of-Life Inventory (PedsQL) 4.0. Findings from 15 families with DMD were compared with 15 unaffected families. The HRQOL, as measured by the mean PedsQL 4.0 Generic Core Scale scores for the boys with DMD were significantly lower than those of age-matched healthy boys, for overall ( p < 0.05, parent-report; p <0.001, self-report), physical ( p < 0.001, parent-report and self-report), and social ( p < 0.05, parent-report) functioning, but the emotional functioning is not affected. The parent–child concordance of our affected DMD families was generally in the moderate-to-good agreement range (intraclass correlation coefficients from 0.51 to 0.73), except for emotional (0.28) and social (0.31) functioning. The PedsQL FIM total score showed an inverse relationship with the affected child’s age (correlation coefficient: −0.55; p < 0.01) and the disease stage (correlation coefficient: −0.63; p < 0.01) confirming that parental HRQOL and overall family functioning worsened as the child increased in age with advancing disease stage.

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Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team

Abstract: In considering quality-of-life analyses for pediatric palliative care programmatic improvements, providers may consider analyzing not only for statistical significance in collective data sets but also for clinically important difference over time.

Cited by 32 publications

References 8 publications

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care

Quality of Life Outcomes According to Differential Nusinersen Exposure in Pediatric Spinal Muscular Atrophy

Health-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families

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