Patients’ and parents’ views regarding supportive care in childhood cancer

Patients’ and parents’ views regarding supportive care in childhood cancer

Purpose Intensive therapies in pediatric malignancies increased survival rates but also occurrence of treatment-related morbidities. Therefore, supportive care fulfills an increasingly important role. In planning development of guidelines with incorporation of shared decision making, we noticed that...

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Bibliographic Details
Published in:Supportive care in cancer Vol. 25; no. 10; pp. 3151 - 3160
Main Authors: Tenniglo, L. J. A., Loeffen, E. A. H., Kremer, L. C. M., Font-Gonzalez, A., Mulder, R. L., Postma, A., Naafs-Wilstra, M. C., Grootenhuis, M. A., van de Wetering, M. D., Tissing, W. J. E.
Format: Journal Article
Language:English
Published: Berlin/Heidelberg Springer Berlin Heidelberg 01-10-2017
Springer
Springer Nature B.V
Subjects:
Analysis
Antibiotics
Cancer
Children & youth
Clinical decision making
Decision making
Gastrointestinal agents
Medical personnel
Medicine
Medicine & Public Health
Nursing
Nursing Research
Oncology
Original
Original Article
Pain Medicine
Parents & parenting
Pediatrics
Rehabilitation Medicine
Teenagers
Pediatric oncology
Supportive care
Shared decision making
Evidence-based guidelines
Patient involvement
Focus group
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Summary:Purpose Intensive therapies in pediatric malignancies increased survival rates but also occurrence of treatment-related morbidities. Therefore, supportive care fulfills an increasingly important role. In planning development of guidelines with incorporation of shared decision making, we noticed that little is known about the needs and preferences of patients and their parents. Our goals were therefore to investigate (1) which supportive care topics patients and parents regard as most important and (2) the preferred role they wish to fulfill in decision making. Methods This qualitative study consisted of three focus groups (two traditional, one online) with patients and parents of two Dutch pediatric oncology centers. Data were transcribed as simple verbatim and analyzed using thematic analysis. Results Eleven adolescent patients and 18 parents shared detailed views on various aspects of supportive care. Themes of major importance were communication between patient and physician (commitment, accessibility, proactive attitude of physicians), well-timed provision of information, and the suitability and accessibility of psychosocial care. In contrast to prioritized supportive care topics by medical professionals, somatic issues (e.g., febrile neutropenia) were infrequently addressed. Patients and parents preferred to be actively involved in decision making in selected topics, such as choice of analgesics and anti-emetics, but not in, e.g., choice of antibiotics. Conclusions Children with cancer and parents were provided a valuable insight into their views regarding supportive care and shared decision making. These results have important implications towards improving supportive care, both in selecting topics for guideline development and incorporating preferences of patients and parents herein.
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ISSN:0941-4355
1433-7339
DOI:10.1007/s00520-017-3723-7