First name
Tammy
Middle name
I
Last name
Kang

Title

Pediatric palliative care parents' distress, financial difficulty, and child symptoms.

Year of Publication

2021

Date Published

2021 Aug 20

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty.</p>

<p><strong>OBJECTIVES: </strong>This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress.</p>

<p><strong>METHODS: </strong>Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score.</p>

<p><strong>RESULTS: </strong>The majority of parents were moderately distressed (52%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone.</p>

<p><strong>CONCLUSIONS: </strong>Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes.</p>

DOI

10.1016/j.jpainsymman.2021.08.004

Alternate Title

J Pain Symptom Manage

PMID

34425212

Title

Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data.

Year of Publication

2021

Number of Pages

e2119730

Date Published

2021 Aug 02

ISSN Number

2574-3805

Abstract

<p><strong>Importance: </strong>Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report.</p>

<p><strong>Objective: </strong>To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure.</p>

<p><strong>Design, Setting, and Participants: </strong>Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children's hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites.</p>

<p><strong>Exposures: </strong>Analyses were stratified by patients' demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non-mutually exclusive complex chronic condition categories.</p>

<p><strong>Main Outcomes and Measures: </strong>Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score.</p>

<p><strong>Results: </strong>Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13).</p>

<p><strong>Conclusions and Relevance: </strong>In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care.</p>

DOI

10.1001/jamanetworkopen.2021.19730

Alternate Title

JAMA Netw Open

PMID

34351400

Title

Self-reported fatigue in children with advanced cancer: Results of the PediQUEST study.

Year of Publication

2018

Date Published

2018 Oct 06

ISSN Number

1097-0142

Abstract

<p><strong>BACKGROUND: </strong>Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. The objectives of this study were to describe fatigue as prospectively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress.</p>

<p><strong>METHODS: </strong>Children (age ≥2 years) with advanced cancer (N = 104) or their parents at 3 academic hospitals reported symptoms at most weekly over 9 months using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system. PediQUEST administered a modified version of the Memorial Symptom Assessment Scale (PQ-MSAS) as part of a randomized controlled trial. Clinical information was abstracted from medical records. Primary outcomes were: 1) fatigue prevalence (yes/no response to PQ-MSAS fatigue item) and 2) fatigue distress (composite score of severity, frequency, and bother). Multivariable models were constructed to identify factors independently associated with fatigue prevalence and scores reflecting fatigue distress (ie, burden).</p>

<p><strong>RESULTS: </strong>Of 920 reports, 46% (n = 425) noted fatigue. When reported, fatigue was of high frequency in 41% of respondents (n = 174), severity in 25%of respondents (n = 107), and bother in 34%of respondents (n = 143). Most reports (84%; n = 358) were associated with scores indicating fatigue distress. In multivariable analyses, fatigue was associated with older age, lower hemoglobin, and distress from particular symptoms (anorexia, nausea, sleep disturbance, sadness, and irritability). In contrast, fatigue distress was associated with distress from nausea, cough, and pain.</p>

<p><strong>CONCLUSIONS: </strong>Fatigue is common among children with advanced cancer and is often highly distressing. Interventions focused on uncontrolled symptoms may ease fatigue distress in children with advanced cancer.</p>

DOI

10.1002/cncr.31639

Alternate Title

Cancer

PMID

30291811

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

Title

Tumor Talk and Child-Well Being: Perceptions of "good" and "bad" news among parents of children with advanced cancer.

Year of Publication

2017

Date Published

2017 Jan 03

ISSN Number

1873-6513

Abstract

CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition.

OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives.

METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding 3 months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items.

RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life.

CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.

DOI

10.1016/j.jpainsymman.2016.11.013

Alternate Title

J Pain Symptom Manage

PMID

28062345

Title

Concurrent care for the medically complex child: lessons of implementation.

Year of Publication

2012

Number of Pages

1281-3

Date Published

2012 Nov

ISSN Number

1557-7740

Abstract

<p>After years of the palliative care community calling for more open access to hospice services, pediatric patients are now eligible to receive simultaneous hospice services and disease-directed therapy. We report on five types of challenges that our team has experienced when implementing concurrent care, illustrated through case studies of three medically complex pediatric patients.</p>

DOI

10.1089/jpm.2011.0346

Alternate Title

J Palliat Med

PMID

22372764

Title

Predictors of antiemetic alteration in pediatric acute myeloid leukemia.

Year of Publication

2014

Number of Pages

1798-805

Date Published

2014 Oct

ISSN Number

1545-5017

Abstract

<p><strong>BACKGROUND: </strong>Better knowledge of patient and cancer treatment factors associated with nausea/vomiting (NV) in pediatric oncology patients could enhance prophylaxis. We aimed to describe such factors in children receiving treatment for acute myeloid leukemia (AML).</p>

<p><strong>METHODS: </strong>Retrospective longitudinal cohort study of 1,668 hospitalized children undergoing treatment for AML from the Pediatric Health Information System database (39 hospitals, 1999-2010). Antiemetic alteration, which included switch (a change in prescribed 5-HT₃ receptor antagonists) and rescue (receipt of an adjunct antiemetic), were first validated and then used as surrogates of problematic NV. Logistic and negative binomial regression modeling were used to test whether patient characteristics were associated with problematic NV.</p>

<p><strong>RESULTS: </strong>Increasing age is associated with greater odds of experiencing antiemetic switch and higher relative rate of antiemetic rescue. Within a treatment cycle, each consecutive inpatient chemotherapy day decreased the likelihood of requiring antiemetic alteration. Each consecutive inpatient-day post-chemotherapy was associated with decreased need for switch, but increased need for rescue. Subsequent cycles of AML therapy were associated with lower odds of antiemetic switch on both chemotherapy and non-chemotherapy days, a lower rate of antiemetic rescue on chemotherapy days, and an increased rate of rescue on non-chemotherapy days.</p>

<p><strong>CONCLUSION: </strong>In pediatric patients with AML, increasing age is strongly associated with greater antiemetic alteration. Antiemetic alteration occurs early in treatment overall, and early within each admission. While additional cycles of therapy are associated with less alteration overall, there is persistent rescue in the days after chemotherapy, suggesting additional etiologies of NV in pediatric cancer patients.</p>

DOI

10.1002/pbc.25108

Alternate Title

Pediatr Blood Cancer

PMID

24939039

Title

Integration of palliative care into the care of children with serious illness.

Year of Publication

2014

Number of Pages

318-25; quiz 326

Date Published

2014 Aug

ISSN Number

1526-3347

DOI

10.1542/pir.35-8-318

Alternate Title

Pediatr Rev

PMID

25086163

Title

The use of palliative chemotherapy in pediatric oncology patients: a national survey of pediatric oncologists.

Year of Publication

2013

Number of Pages

88-94

Date Published

2013 Jan

ISSN Number

1545-5017

Abstract

<p><strong>BACKGROUND: </strong>Many children continue receiving chemotherapy after there is no realistic hope for cure. One factor that influences parental decisions to pursue medical therapies is physician preference. To date, no studies have described pediatric oncologists' perspectives and practices regarding palliative chemotherapy (PC).</p>

<p><strong>PROCEDURE: </strong>We surveyed via email pediatric oncologists practicing in the U.S who are members of the Children's Oncology Group to achieve the following objectives: (1) Describe pediatric oncologists treatment considerations regarding the use of PC. (2) Assess treatment considerations that influenced pediatric oncologists' therapy recommendations for their most recent patient receiving PC. There were 422 participants (40.8%) who completed the survey.</p>

<p><strong>RESULTS: </strong>The most important factors considered by pediatric oncologists when prescribing PC were the toxicity of the chemotherapy (4.90 mean SD = 0.36 utilizing 5 point scale with 1 = not important to 5 = very important), the preferences of the family (4.57; SD = 0.60), and the potential to decrease symptoms arising from tumor burden (4.42; SD = 0.65). These treatment considerations were not as important when PC was prescribed for their most recent patient. Similarly, the chief aims in prescribing PC were not achieved for recent patients receiving PC. For their most recent patient who received PC, 40.8% believe this treatment was primarily for parental wishes.</p>

<p><strong>CONCLUSION: </strong>According to 80.2% of pediatric oncologists completing the survey, some patients receive chemotherapy beyond medical benefit and 40.8% of these oncologists have prescribed PC for the purpose of parental wishes to a recent patient. The chief aims in prescribing palliative chemotherapy were not achieved for recent patients.</p>

DOI

10.1002/pbc.24329

Alternate Title

Pediatr Blood Cancer

PMID

23024072

Title

Psychological Well-Being and Family Environment of Siblings of Children with Life Threatening Illness.

Year of Publication

2015

Number of Pages

981-4

Date Published

2015 Nov

ISSN Number

1557-7740

Abstract

<p><strong>BACKGROUND: </strong>The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings.</p>

<p><strong>OBJECTIVE: </strong>We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology would be comparable to the general population of children their age; and (2) higher family functioning scores would be associated with lower clinical scores and higher adaptive scores for these siblings.</p>

<p><strong>METHODS: </strong>We conducted an observational study with families in which a patient receiving palliative care had one or more siblings between the ages of 6 and 11. Parents completed the Behavioral Assessment System for Children, Second Edition (BASC-2) to assess the siblings' psychological well-being and the Family Assessment Device (FAD) to assess the family environment.</p>

<p><strong>RESULTS: </strong>Twenty-four parents reported data for 30 siblings. Only three siblings scored in the clinical range on a BASC-2 composite clinical scale, and 11 siblings scored in the at-risk range on one or more composite scales. Higher FAD scores predicted significantly higher externalization composite clinical scores (7.54, 95% CI: 1.12, 13.97, p &lt; 0.05) and significantly higher behavioral composite scores (7.88, 95% CI: 1.55, 14.21, p &lt; 0.05).</p>

<p><strong>DISCUSSION: </strong>Siblings of pediatric palliative care patients are not experiencing lower psychological well-being than the general population. The prediction that a positive family environment would be associated with higher levels of psychological health was supported.</p>

DOI

10.1089/jpm.2015.0150

Alternate Title

J Palliat Med

PMID

26393493

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