First name
Hasan
Last name
Al-Sayegh

Title

Parent Perceptions of Team-Delivered Care for Children with Advanced Cancer: A report from the PediQUEST study.

Year of Publication

2020

Date Published

2020 May 22

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>Childhood cancer care is delivered by interprofessional healthcare teams however little is known about how parents perceive overall team-delivered care (TDC).</p>

<p><strong>OBJECTIVES: </strong>We sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics.</p>

<p><strong>METHODS: </strong>Cross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multi-site symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding 3 months. Likert scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork and other factors. Factors associated with parent perceptions of "excellent" TDC were identified using Fisher's Exact test.</p>

<p><strong>RESULTS: </strong>Eighty-six parents (83%) responded. Over the preceding 3 months, 63% (n=54) of parents reported excellent TDC. However, only 47% (n=40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%, n=60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, primary nurse) was associated with excellent TDC (all p≤0.001, no correction for multiple comparisons).</p>

<p><strong>CONCLUSION: </strong>Among parents of children with advanced cancer, more than one-third report less-than-excellent TDC. Additionally, less than half report excellent teamwork, and ratings of care rendered by individual clinicians are highly variable. Findings suggest interventions are needed to enhance interprofessional teamwork in the care of children with advanced cancer.</p>

DOI

10.1016/j.jpainsymman.2020.05.019

Alternate Title

J Pain Symptom Manage

PMID

32450115

Title

The Relationship Between Household Income and Patient-Reported Symptom Distress and Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study.

Year of Publication

2018

Date Published

2018 Sep 14

ISSN Number

1097-0142

Abstract

<p><strong>BACKGROUND: </strong>Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described.</p>

<p><strong>METHODS: </strong>The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [&lt;$50,000/year] or high income [≥$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL.</p>

<p><strong>RESULTS: </strong>A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (β =3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (β=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (β=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (β=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (β=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (β=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (β=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (β=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL.</p>

<p><strong>CONCLUSIONS: </strong>In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.</p>

DOI

10.1002/cncr.31668

Alternate Title

Cancer

PMID

30216416

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