First name
Russ
Last name
Geyer

Title

Economic impact of advanced pediatric cancer on families.

Year of Publication

2014

Number of Pages

594-603

Date Published

2014 Mar

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer.</p>

<p><strong>OBJECTIVES: </strong>To describe perceived financial hardship, work disruptions, income losses, and associated economic impact in families of children with advanced cancer stratified by federal poverty level (FPL).</p>

<p><strong>METHODS: </strong>Cross-sectional survey of 86 parents of children with progressive, recurrent, or nonresponsive cancer at three children's hospitals. Seventy-one families with complete income data (82%) are included in this analysis.</p>

<p><strong>RESULTS: </strong>Parental work disruptions were prevalent across all income levels, with 67 (94%) families reporting some disruption. At least one parent quit a job because of the child's illness in 29 (42%) families. Nineteen (27%) families described their child's illness as a great economic hardship. Income losses because of work disruptions were substantial for all families; families at or below 200% FPL, however, were disproportionately affected. Six (50%) of the poorest families lost more than 40% of their annual income as compared with two (5%) of the wealthiest families (P&nbsp;=&nbsp;0.006). As a result of income losses, nine (15%) previously nonpoor families fell from above to below 200% FPL.</p>

<p><strong>CONCLUSION: </strong>The economic impact of pediatric advanced cancer on families is significant at all income levels, although poorer families suffer disproportionate losses. Development of ameliorative intervention strategies is warranted.</p>

DOI

10.1016/j.jpainsymman.2013.04.003

Alternate Title

J Pain Symptom Manage

PMID

23870843

Title

Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study.

Year of Publication

2015

Number of Pages

1928-35

Date Published

06/2015

ISSN Number

1527-7755

Abstract

<p><strong>PURPOSE: </strong>Thousands of children are living with advanced cancer; yet patient-reported outcomes (PROs) have rarely been used to describe their experiences. We aimed to describe symptom distress in 104 children age 2 years or older with advanced cancer enrolled onto the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Study (multisite clinical trial evaluating an electronic PRO system).</p>

<p><strong>METHODS: </strong>Symptom data were collected using age- and respondent-adapted versions of the PediQUEST Memorial Symptom Assessment Scale (PQ-MSAS) at most once per week. Clinical and treatment data were obtained from medical records. Individual symptom scores were dichotomized into high/low distress. Determinants of PQ-MSAS scores were explored using linear mixed-effects models.</p>

<p><strong>RESULTS: </strong>During 9 months of follow-up, PQ-MSAS was administered 920 times: 459 times in teens (99% self-report), 249 times in children ages 7 to 12 years (96% child/parent report), and 212 times in those ages 2 to 6 years (parent reports). Common symptoms included pain (48%), fatigue (46%), drowsiness (39%), and irritability (37%); most scores indicated high distress. Among the 73 PQ-MSAS surveys administered in the last 12 weeks of life, pain was highly prevalent (62%; 58% with high distress). Being female, having a brain tumor, experiencing recent disease progression, and receiving moderate- or high-intensity cancer-directed therapy in the prior 10 days were associated with worse PQ-MSAS scores. In the final 12 weeks of life, receiving mild cancer-directed therapy was associated with improved psychological PQ-MSAS scores.</p>

<p><strong>CONCLUSION: </strong>Children with advanced cancer experience high symptom distress. Strategies to promote intensive symptom management are indicated, especially with disease progression or administration of intensive treatments.</p>

DOI

10.1200/JCO.2014.59.1222

Alternate Title

J. Clin. Oncol.

PMID

25918277

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