Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review

Pinheiro, Laura C.; McFatrich, Molly; Lucas, Nicole; Walker, Jennifer; Withycombe, Janice S.; Hinds, Pamela S.; Sung, Lillian; Tomlinson, Deborah; Freyer, David R.; Mack, Jennifer W.; Baker, Justin N.; Reeve, Bryce B.

doi:10.1007/s11136-017-1692-4

Cited by 75 publications

(67 citation statements)

References 78 publications

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“…In general, younger children (ages 7-8 years) who needed assistance with reading had WRAT-WR scores that were at or below a secondgrade reading level. This finding is consistent with the age ranges presented in a systematic review of instruments validated for use in pediatric oncology showing that a large percentage of instruments begin written data collection around 8 years of age [24]. It has also been noted that the reliability and validity of self-report PROs in children improves around this age [25].…”

Section: Discussionsupporting

confidence: 87%

The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology

et al. 2019

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Purpose-Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study's purpose was to determine relationships between literacy, age, and race and their influence on a child's ability to understand and complete a PRO instrument. Methods-The Wide Range Achievement Test was used to evaluate literacy in children and young adults with cancer, participating in a cognitive interview for the Pediatric PRO-CTCAE instrument. 140 participants (7-20 years) were recruited from 8 sites. Logistic regression and multivariable liner regression were used to examine relationships among key variables. Results-Higher literacy scores were significantly associated with fewer PRO-CTCAE items being identified as "hard to understand" (p=0.017). Literacy scores increased with age, but older participants were more likely to fall behind expected reading levels compared with US norms. A one year increase in age was associated with a 19% increase in the likelihood for being below the expected WRAT word reading score (OR 1.19; 95% CI 1.06-1.33, p=0.003). No associations were found between race and literacy. Conclusions-Wide variations in literacy were noted across age groups. All participants were able to complete the Pediatric PRO-CTCAE, although most 7 year olds (63%) required reading assistance. Those with lower literacy skills were able to understand items suggesting that multiple factors may be involved in comprehension (developmental stage, concentration, vocabulary, or prior health experiences). Risk for falling below expected literacy levels increased with age implying a need for literacy consideration for cancer patients.

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Section: Discussionsupporting

confidence: 87%

The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology

et al. 2019

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“…System challenges include lack of sufficient integrative medicine, chronic pain, psychiatry, psychology, and palliative care resources to meet patients’ needs [ 12 , 13 , 14 ]. Multiple interventions have been attempted to improve the reporting of symptoms by patients and families, such as improved outpatient screening [ 15 ], frequent monitoring [ 8 , 16 , 17 ], increased use of patient-reported outcomes (PROs) [ 5 , 18 ], technological advances [ 8 , 16 , 17 ], and embedding palliative care experts within oncology centers [ 19 ]. In this article, we describe the current state of symptom assessment and management within pediatric palliative care, with a focus on pediatric oncology.…”

Section: Introductionmentioning

confidence: 99%

From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care

2018

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Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom reporting and expert treatment is critical to preserving a patient’s physical, psychological, emotional, social, and existential heath. We describe emerging methods of symptom and health-related quality-of-life (HRQOL) assessment through patient-reported outcomes (PROs) tools now used in clinical practice and novel research studies. Computer-based and mobile apps can facilitate assessment of symptoms and HRQOL. These technologies can be used alone or combined with therapeutic strategies to improve symptoms and coping skills. We review technological advancements, including mobile apps and toys, that allow improved symptom reporting and management. Lastly, we explore the value of a pediatric palliative care interdisciplinary team and their role in assessing and managing distressing symptoms and minimizing suffering in both the child and family. These methods and tools highlight the way that novel, new, and innovative approaches to symptom assessment and management are changing the way that pediatrics and pediatric palliative care will be practiced in the future.

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“…Combined with previous literature, this study offers strong evidence for the construct validity and responsiveness of PROMIS Pediatric measures in children and adolescents with cancer . We believe there is sufficient evidence for use of the PROMIS Pediatric measures in clinical trials, where there are few existing PRO measures that have been as extensively evaluated as PROMIS Pediatric measures . Use of PRO measures of symptoms and functioning in oncology trials has been regarded by the Food and Drug Administration as the gold standard for assessing the benefits and risks of cancer therapies, but historically child reports have been underutilized due to a lack of available robust PRO measures .…”

Section: Discussionmentioning

confidence: 58%

“…The study was limited to children who spoke English and resided in the United States or Canada, and would benefit from more evalua- Combined with previous literature, 14,[43][44][45] this study offers strong evidence for the construct validity and responsiveness of PROMIS Pediatric measures in children and adolescents with cancer. 14 46 Use of PRO measures of symptoms and functioning in oncology trials has been regarded by the Food and Drug Administration as the gold standard for assessing the benefits and risks of cancer therapies, but historically child reports have been underutilized due to a lack of available robust PRO measures. 47 The PROMIS Pediatric measures offer an opportunity to elicit child voices directly so that symptom reports reflect their individual experiences, without the filter of a parent or clinician proxy.…”

Section: Discussionmentioning

confidence: 99%

Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment

Reeve

McFatrich

Mack

et al. 2020

Pediatric Blood & Cancer

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Background The Patient‐Reported Outcomes Measurement Information System (PROMIS) Pediatric measures were designed to assess symptoms and functioning in children and adolescents. The study goal was to evaluate the validity and responsiveness of the PROMIS Pediatric measures in a diverse cohort of children with cancer. Methods Children (7‐18 years) from nine pediatric oncology hospitals completed surveys at 72 hours preceding treatment initiation (T1) and at follow‐up (T2) approximately 7 to 17 days later for chemotherapy, and 4+ weeks later for radiation. Children completed PROMIS Pediatric measures (Mobility, Pain Interference, Fatigue, Depressive Symptoms, Anxiety, Psychological Stress), Memorial Symptom Assessment Scale (MSAS), and global impressions of change (GIC) questions on their symptoms and functioning at T2 reflecting on T1. Parents completed the Lansky Play‐Performance Status (PPS) scale and medication list for their child. Results The children (n = 482) were average age 12.9 years, 46% female, 60% Caucasian, and had diverse cancers and treatments. There were moderate to strong correlations between PROMIS Pediatric and MSAS, supporting convergent validity. In support for known‐groups validity, the PROMIS Pediatric average scores were statistically different (P < 0.05) for most domains by PPS and if the child was on a medication (or not) for controlling a symptom. The PROMIS Pediatric measures were responsive over time in association with the GIC. Conclusions In a large, diverse sample of children and adolescents with cancer, there was strong evidence for the construct validity and responsiveness of the PROMIS Pediatric measures. This evidence supports PROMIS Pediatric measure use in pediatric oncology trials.

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Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review

Cited by 75 publications

References 78 publications

The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology

The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology

From the Child’s Word to Clinical Intervention: Novel, New, and Innovative Approaches to Symptoms in Pediatric Palliative Care

Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment

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