Pain in long‐term survivors of childhood cancer: A systematic review of the current state of knowledge and a call to action from the Children's Oncology Group

Abstract

Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-oflife/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature. Cancer 2021;127:35-44.

Psychosocial Risk, Symptom Burden, and Concerns in Families Affected by Childhood Cancer

“…Our ndings that the majority of families were identi ed as belonging to the universal risk category, followed by targeted and clinical risk categories are consistent with the broader literature [18,19,35]. Though comprehensive research on child and teen symptoms in pediatric oncology is scant, the most commonly evaluated and reported symptoms in the literature include fatigue, sleep, pain, and psychosocial distress [7,24,36]. While our results re ect some of these symptoms (e.g., fatigue, pain, and anxiety) as the most intensely experienced, it is unclear which symptoms patients nd most distressing, which may differ.…”

“…Left unaddressed, these challenges may negatively affect satisfaction with care, a family's ability to cope, long-term mental health, and potentially mortality of the child [3][4][5][6]. Even after treatment has ended, symptoms such as pain and fatigue may persist for many years into adulthood [7][8][9][10]. In response, standards for the psychosocial care of children with cancer and their families were published in 2015.…”

Sociodemographic and Medical Determinants of Quality of Life in Long-Term Childhood Acute Lymphoblastic Leukemia Survivors Enrolled in EORTC CLG Studies

“…Given that physical functioning of the patients can be affected by both the disease as well as each of these treatment modalities (through osteonecrosis, loss of muscle strength, peripheral neuropathy, toxic processes to the central nervous system, pain, and fatigue [ 37 ]), both factors could explain the higher risk of physical problems in relapsed and irradiated subgroups.…”

Risk of suicide among individuals with a history of childhood cancer

“…1,2 Survivors of childhood cancer have an increased risk of experiencing chronic pain, disfigurement, activity limitations, emotional distress, increased financial burden, impaired quality of life, and suicidal ideation, which may not present until decades after the diagnosis. [3][4][5][6][7][8][9][10] Despite these well-studied psychosocial outcomes, there are limited data with inconsistent findings on deaths by suicide among individuals with a childhood cancer history. Perhaps the most robust data to date regarding the risk of suicide following a childhood cancer diagnosis include analyses of the Childhood Cancer Survivor Study (CCSS) and the St. Jude Lifetime Cohort Study (SJLIFE).…”