Bridging the Gap: A Pilot Program to Understand and Meet the Needs of Pediatric Patients and Families as They Transition Off Cancer-Directed Therapy

Abstract

As a result of advances in curative therapies, more than 80% of children and adolescents diagnosed with cancer are expected to survive into adulthood (Jemal, Siegel, Xu, & Ward, 2010; Noone et al., 2017). This unique population may experience long-term physical and psychosocial sequela including chronic health conditions (CHCs), high levels of distress, poor health-related quality of life, and unmet psychosocial needs (Ness et al., 2008). Late effects of treatment may affect multiple organ systems including reproductive, endocrine, gastrointestinal, urinary tract, musculoskeletal, neurologic, auditory, ocular, oral/dental, dermatologic, cardiovascular, pulmonary, metabolic, immune systems as well as other aspects of life including psychosocial, behavioral, and neurocognitive functioning. This population is also at increased risk for subsequent malignancies (Bhakta, Liu, Ness, Baassiri, & Eissa, 2017; Oeffinger et al., 2006). The Childhood Cancer Survivor Study includes individuals who have survived 5 or more years after a diagnosis of cancer (leukemia, tumor, or similar illness) diagnosed during childhood or adolescence, and reported the cumulative incidence of CHCs in this population was 73.4% (30 years after diagnosis), with 42.4% of those conditions considered severe, disabling, or life threatening (Oeffinger et al., 2006). More recently, the St. Jude Lifetime Cohort Study (SJLIFE) reported the cumulative incidence of CHCs for 819452J POXXX10.

Family factors and health‐related quality of life within 6 months of completion of childhood cancer treatment

“…Further, findings support further study of psychosocial screening and intervention for childhood cancer patients during transition off treatment within a family context. Consistent with previous literature, 30 , 32 findings indicate that family functioning plays a role in patient HRQL and highlight the importance of assessing family factors as part of psychosocial screening 31 . Future studies would benefit from incorporating measures of illness uncertainty, which has been shown to impact both parent and child HRQL, 33 to further understand associations between family functioning and youth adaptation at this time.…”

“…Even though family distress and burden generally decrease over time following a cancer diagnosis, 30 results are consistent with other studies confirming the relationship between family factors and patient HRQL across the cancer treatment continuum 6 ,. 16 The transition off cancer treatment is a critical time period to examine these associations, because it is marked by fewer guidelines and more ambiguity than the roadmaps families follow on treatment and during survivorship 31 …”

“…It is particularly important to offer screening and treatment services before initiating survivorship care, as youth and their families note difficulty accessing psychosocial services after treatment completion 40 . Lack of systematic screening during this challenging phase represents a missed opportunity to provide, tailor, or test evidence‐based interventions that can ultimately bolster resilience in the face of late effects in long‐term survivorship 31 ,. 38 Finally, children and their families may benefit from receiving early preparation regarding post‐treatment challenges to improve engagement in survivorship care 40 …”

“…The period after completing pediatric cancer treatment is a vulnerable time when families navigate the stressors of decreased contact with the medical team, monitor cancer and treatment‐related effects, and attempt to resume normal daily activities while living with uncertainty 31 . Results lay the groundwork for future studies to further evaluate the effects of neurocognitive sequelae and family factors on youth HRQL after cancer treatment completion.…”

Evaluation of a Transition to Survivorship Program for Pediatric, Adolescent and Young Adult Cancer Patients and Caregivers

“…Results of the study indicated that the majority of the participants found the transition visit and materials to be helpful, and they recommended that all survivors and caregivers should receive the transition visit materials immediately after treatment ends (58%), during treatment (17%), or several months after treatment ends (17%). Many participants demonstrated limited knowledge about their potential late effects based upon the treatment that they received and how long they needed follow-up care [10].…”