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Assessment of end‐of‐treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families
Author(s) -
Karst Jeffrey S.,
Hoag Jennifer A.,
Chan Sherilynn F.,
Schmidt Debra J.,
Anderson Lynnette J.,
Englebert Nicole E.,
Igler Eva C.,
Bingen Kristin M.
Publication year - 2018
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.27109
Subject(s) - psychosocial , medicine , pediatric cancer , family medicine , multidisciplinary approach , pediatric oncology , cancer , survivorship curve , disease , medline , psychiatry , social science , sociology , political science , law
Background/Objectives The transition off active treatment is a time of significant stress for pediatric cancer patients and families. Providing information and support at this time is among the new psychosocial standards of care in pediatric oncology. This study sought to explore patient and family needs and concerns at the end of their active cancer treatment. Design/Methods Forty‐nine caregiver–child dyads completed semi‐structured interviews and surveys 1–2 months before ending treatment, and again 3–7 months after treatment concluded. Results Patients and caregivers reported a moderate level of understanding of follow‐up care needs, late effects, and perceived preparation. Altogether, child, adolescent, and young adult cancer patients and parents identified similar priorities for information needed during the transition off active treatment. The most essential pieces of information desired by patients and families across time points included reviews of late effects, schedules for follow‐up care, health and physical restrictions, communication with the patient's primary care provider, and provision of a treatment summary. At Time 2, patients and families reported a greater retrospective desire for emotional health resources. Most patients and caregivers wanted information from a variety of sources, but the desired timing to receive this information varied and was dependent on disease group. Conclusions There are many essential components to end‐of‐treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.