APPs key to helping children, families transition to ‘new normal’ after treatment
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The completion of cancer-directed therapy is a time for celebration.
Bells are rung and confetti is thrown to commemorate the milestone. However, for many families of children with cancer, this transition off therapy is also marked by fear of the unknown.
Treatment completion often signals many simultaneous changes: Children head back to the classroom, parents return to work and oncology checkups — which felt like a reassuring “safety net” — are now spread months apart. It is also a time to resume visits with the child’s primary care provider or to establish relationships with new clinicians.
APPs can play a critical role in supporting patients and their families through these transitions and helping them navigate their “new normal.”
Identifying needs
In a busy oncology clinic, children returning for off-therapy visits may be assumed to have fewer needs and be lower in priority than the new patient in the room next door, the patient vomiting across the hall and the patient in the waiting room whose cancer has recurred.
Unlike long-term childhood cancer survivors, little research has been conducted to understand the physical, emotional and cognitive needs and concerns that surface during the transition off therapy.
In interviews conducted with families of children with cancer who completed therapy in the prior 2 months to 11 months, conflicting emotions emerged.
Although families reported relief to be done with treatment, they also expressed worry and fear of recurrence. A return to a sense of normalcy also resulted in changes to relationships with friends, family members and health care providers.
McKenzie and Curle developed a grounded theory model titled “the end of treatment is not the end.” They depicted the adjustment to the initial cancer diagnosis as bringing an increase in support, whereas post-treatment was met with a decrease in support and the perception that other people just didn’t understand.
Karst and colleagues explored the types of information and support patients and families sought — and when they wanted it delivered and who they wanted to deliver it. Families preferred transition preparation to begin at the end of therapy or 1 to 2 months prior, and desired that the oncologist, nurse practitioner (NP) or nurse deliver the information.
Patients and families ranked the following topics as most desirable: communication with school staff and the PCP; a summary of the child’s treatment; a schedule of follow-up tests and appointments; anticipatory guidance about emotional or adjustment issues; and a review of late effects and any health or physical restrictions.
Empowering patients, families
At St. Jude Children’s Research Hospital, we developed an innovative, APP-led model of care to provide anticipatory guidance and navigational support for patients and families as they prepare for the transition off therapy and for the next few years of early survivorship.
The Transition Oncology Program (TOP) provides systematic and prospective transition-related services. Prior to the end of therapy, TOP team members — including NPs, rehabilitation services coordinators, psychologists, social workers and school advocacy coordinators — begin meeting with patients and families to assess specific post-therapy needs and provide education related to the off-therapy transition.
Additionally, the team prepares patients for the eventual transition to our long-term survivorship clinic and works with adolescents and emerging adults to bolster their health literacy skills in anticipation of transition to adult health care providers. The goal is to empower the patient and family to manage all these transitions by providing anticipatory guidance, education and resources, and navigational support.
NPs develop and periodically update the patient’s oncology treatment summary and serve as a liaison between the primary oncology team and the patient’s PCP and any community subspecialists. They screen for physical, cognitive and psychosocial concerns between off-therapy appointments and provide ongoing care coordination and transition-related education (eg, late effects of cancer therapy, promotion of healthy behaviors).
As most of our patients live in other cities and states, our rehabilitation services coordinator helps families navigate local physical therapy, occupational therapy, speech/language pathology or audiology services, and provides care coordination with state early intervention programs, Head Start services and schools.
Our psychologists conduct a TOP consult to evaluate for potential behavioral, social, emotional or family functioning factors that may impede successful transition, and offer a formal cognitive screen to assess for potential cognitive and academic risk factors. They provide anticipatory guidance and psychoeducation on potential concerns and strategies for seeking support and may recommend continuing therapy with local mental health services.
TOP school advocacy coordinators provide education about potential cognitive late effects that can influence learning and school performance, and assist school personnel in understanding the impact of treatment and the importance of monitoring for changes in learning or behavior. They provide recommendations for Individualized Education Programs (IEP) or 504 plans and support families in navigating the evaluation process. Additionally, they follow-up with families regarding the results of the patient’s psychological testing or cognitive screen.
Social workers conduct psychosocial transition assessments — screening for vocational, educational and mental and behavioral health concerns, insurance issues and access to local medical care — and provide information about medical decision-making (eg, conservatorship, age of majority). They also provide ongoing psychoeducation and anticipatory guidance and supportive counseling, as well as assist families in navigating hospital and community-based resources.
Measuring the impact
It is essential to evaluate the impact of any new program. Early measures we are tracking include successful reengagement with the PCP, resumption of routine vaccinations and, when needed, the establishment of new providers in the local community such as rehabilitation services, mental health or medical subspecialists.
We are monitoring the health literacy progress of our adolescents and emerging adults using the Transition Readiness Assessment Questionnaire. Feedback from the patient and family can inform overall program satisfaction, perceptions of social and emotional support provided, and the success of transition milestones such as school reentry. Surveys of the primary oncology team can assess their satisfaction with the program and explore balancing measures such as the potential for role confusion and the impact of additional appointments with TOP team members.
APPs play a critical role on this interdisciplinary team dedicated to assessing and addressing patient and family needs and concerns during the transition off therapy and for the next few years of early survivorship. Additional research is needed to further understand what information and supports families need during this time, which approaches are most effective, and to assess how this early attention and intervention affects patients as they reach long-term survivorship.
- References:
- Björk M., et al. Eur J Cancer Care (Engl). 2011;doi:10.1111/j.1365-2354.2009.01159.x.
- Karst J. et al. Pediatr Blood Cancer. 2018;doi:10.1002/pbc.27109.
- McKenzie SE and Curle C. Psychooncology. 2012;doi:10.1002/pon.1953.
- Muskat B., et al. J Pediatr Oncol Nurs. 2017;doi:10.1177/1043454217703594.
- Sawicki GS, et al. J Pediatr Psychol. 2011;doi:10.1093/jpepsy/jsp128.
- For more information:
- Emily K. Browne, DNP, RN, CPNP, is director of the transition oncology program at St. Jude Children’s Research Hospital. She can be reached at emily.browne@stjude.org.
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