Pain at home during childhood cancer treatment: Severity, prevalence, analgesic use, and interference with daily life

Julia D H P Simon, Femke R A A Van Loon, Juul Van Amstel, Gina S Elmont, C Michel Zwaan, Marta Fiocco, Sasja A Schepers, Wim J E Tissing, Erna M C Michiels, Sasja Schepers

Research output: Contribution to journalArticlepeer-review

7 Citations (Scopus)


BACKGROUND: Pain is a common symptom in childhood cancer. Since children spend more time at home, families are increasingly responsible for pain management. This study aimed at assessing pain at home.

PROCEDURE: In this longitudinal observational study (April 2016-January 2017), pain severity and prevalence, analgesic use, and pain interference with daily life (Brief Pain Inventory Short Form) were assessed for 4 consecutive days around the time of multiple chemotherapy appointments. Descriptive statistics (frequencies and percentages) were used to report pain severity (with clinically significant pain defined as: score ≥ 4 on "worst pain" or "average pain in the last 24 h"), pain prevalence, and analgesic use. Mixed models were estimated to assess whether patient characteristics were associated with pain severity, and whether pain severity was associated with interference with daily life.

RESULTS: Seventy-three children (50.7% male) participated (1-18 years). A majority (N = 57, 78%) experienced clinically significant pain at least once, and 30% reported clinically significant pain at least half the time. In 33.6% of scores ≥ 4, no medication was used. We found an association between pain severity and interference with daily life: the higher the pain, the bigger the interference (estimated regression coefficient = 1.01 [95% CI 0.98-1.13]).

CONCLUSIONS: The majority of children experienced clinically significant pain at home, and families frequently indicated no medication use. A stronger focus on education and coaching of families seems essential, as well as routine screening for pain in the home setting.

Original languageEnglish
Article numbere28699
Pages (from-to)e28699
JournalPediatric blood & cancer
Issue number12
Publication statusPublished - Dec 2020


  • Activities of Daily Living
  • Adolescent
  • Analgesics/therapeutic use
  • Antineoplastic Combined Chemotherapy Protocols/adverse effects
  • Cancer Pain/chemically induced
  • Child
  • Child, Preschool
  • Female
  • Follow-Up Studies
  • Home Care Services/statistics & numerical data
  • Humans
  • Infant
  • Infant, Newborn
  • Longitudinal Studies
  • Male
  • Neoplasms/drug therapy
  • Netherlands/epidemiology
  • Pain Management
  • Prevalence
  • Prognosis
  • Severity of Illness Index


Dive into the research topics of 'Pain at home during childhood cancer treatment: Severity, prevalence, analgesic use, and interference with daily life'. Together they form a unique fingerprint.

Cite this