Explorative study on the aftercare of pediatric brain tumor survivors: a parents’ perspective

• Published in: Supportive care in cancer Vol. 19; no. 10; pp. 1637 - 1646
• Main Authors: Aukema, Eline J., Last, Bob F., Schouten-van Meeteren, A. Y. Netteke, Grootenhuis, Martha A.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer-Verlag 01.10.2011; Springer; Springer Nature B.V
• Subjects: Adolescent; Aftercare - organization & administration; Brain; Brain Neoplasms - complications; Brain Neoplasms - therapy; Brain tumors; Child; Child, Preschool; Data Collection; Effects; Female; Follow-Up Studies; Health care; Health Knowledge, Attitudes, Practice; Health Services Needs and Demand - statistics & numerical data; Humans; Long term; Male; Medicine; Medicine & Public Health; Nursing; Nursing Research; Oncology; Original; Original Article; Pain Medicine; Parenting; Parents; Pediatrics; Referral and Consultation; Rehabilitation Medicine; Surveys; Survivor; Survivors - psychology; Time Factors; Tumors; Young Adult; Late effects; Children; Aftercare; Brain tumors; Follow-up
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-010-0995-6

Purpose Whilst the need for aftercare for long-term sequelae of brain tumor survivors is well known and evident, information from a parent’s perspective is lacking on whether the need for aftercare is detected in time, and whether the aftercare is timely initiated and meets the needs for aftercare. Methods A survey regarding aftercare in five domains of long-term sequelae (neurocognitive, physical, emotional, social and parenting problems) was sent to 57 parents of survivors treated for a brain tumor in our center. Results Forty-two (74%) parents participated in this study. With a mean period of 8.1 years (SD = 3.9) since start of treatment, the majority of the survivors (mean age = 14.7 years, SD = 3.8) needed aftercare in several domains of functioning. This need was highest and most met for physical sequelae ( N  = 34), and lowest but still substantial and least met for parental difficulties ( N  = 11). Parents of survivors with surgery only as treatment reported a similar need for aftercare as those of survivors with adjuvant therapy. Most of the survivors received aftercare; however, substantial delay of aftercare and self-referral for aftercare were frequently reported. Furthermore, parents showed a lack of knowledge about and use of aftercare services. Conclusions Increased awareness for the need for psychosocial aftercare is required. Coaching, psycho-educative programs about coping with the long-term sequelae and information about available specialized aftercare services are required to meet the needs of brain tumor survivors and their parents more adequately.