Faculty Collaboration Database

Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families. Pediatr Blood Cancer 2018 Aug;65(8):e27109

Date

04/27/2018

Pubmed ID

29697192

DOI

10.1002/pbc.27109

Scopus ID

2-s2.0-85046037124 (requires institutional sign-in at Scopus site)   20 Citations

Abstract

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.

Author List

Karst JS, Hoag JA, Chan SF, Schmidt DJ, Anderson LJ, Englebert NE, Igler EC, Bingen KM

Authors

Lynnette J. Anderson NP APP Mgr Hybrid in the Pediatrics department at Medical College of Wisconsin
Kristin M. Bingen PhD Professor in the Pediatrics department at Medical College of Wisconsin
Jennifer A. Hoag PhD Associate Professor in the Pediatrics department at Medical College of Wisconsin
Jeffrey S. Karst PhD Associate Professor in the Pediatrics department at Medical College of Wisconsin
Debra Schmidt NP APP Hybrid in the Pediatrics department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Adolescent
Caregivers
Child
Female
Hematopoietic Stem Cell Transplantation
Humans
Longitudinal Studies
Male
Neoplasms
Patient Education as Topic
Prospective Studies