ASPO Abstracts
Family experiences with survivorship care plans after completion of therapy for pediatric ALL
Category: Behavioral Science & Health Communication, Survivorship & Health Outcomes/Comparative Effectiveness Research
Conference Year: 2018
Abstract Body:
Purpose: Late-effects, second cancers, and recurrence are a concern for pediatric cancer survivors, survivorship care plans (SCPs) have the potential to help as they transition from oncology to primary care. This study was conducted to evaluate the impact and use of individualized survivorship care plans for childhood cancer survivors. Methods: N=21 patients and N=24 parents/caregivers were enrolled between September of 2015 and October 2016. Patients were eligible if they had achieved remission of acute lymphoblastic leukemia (ALL) between four months and one year prior to the study. Patients over the age of 11 (N=13) and at least one caregiver were surveyed at three month intervals; enrollment (T1), SCP delivery (T2), and follow-up (T3) (retention 90.9%). Descriptive statistics were generated for demographic and cancer characteristics and p values calculated using McNamar tests to track change from T1 through T3. Results: A majority of patients and parents/caregivers were white (87.5%), college graduates (54.2%), and insured privately (76.2%). While 91.3% of parents/caregivers intended to share their child’s SCP with the child’s school, other healthcare providers, or family members at T2 only 60.9% had done so by T3 (p=0.01). At T1 the majority of caregivers (N=17, 73.9%) thought the plan should be delivered after treatment but by T3 less than half agreed (N=11, 47.8%) and preferred the plan to be delivered before the end of treatment (N=12, 52.2%). A small proportion of patients surveyed said they felt concerned about what they had learned from their SCP at T1 (N=2, 15.4%) and T3 (N=2, 16.7%). The majority of patients felt that their “doctor made sure I understood everything on the SCP” (N=11, 91.7%) and "learned something new from the SCP" (N=10, 83.3%). Understanding of survivorship care and cancer diagnosis increased among both parents and patients after delivery of the SCP. Conclusions: Although parents/caregivers and patients reported high levels of knowledge about diagnosis and survivorship care prior to delivery of the SCP, they still showed an increase in these areas at T3. Pediatric oncology practices interested in providing SCPs should disseminate SCPs to primary care at the completion of therapy as families may not share plans independently.
Keywords: pediatric, survivorship care plans