Transitioning to Survivorship: A Pilot Study

Abstract

There are no clear transition guidelines for adolescent and young adult cancer patients, their parents, and their primary care providers (PCPs) when completing active therapy and within the first few years after therapy. The purpose of this pilot study was to identify needs and concerns of recently treated adolescent cancer patients and their parents, young adult cancer survivors, and the community PCPs of adolescent patients. Four focus group interviews were conducted with survivors and parents, and 3 in-depth interviews were conducted with PCPs. All interviews were audiotaped and transcribed for content analysis. A range of needs were identified, including lack of adequate written and verbal information about their prior treatment, its potential side effects, and appropriate follow-up care. The best sources for education were identified as the primary oncologist, nurse practitioner, or nurse. At completion of treatment, parents and adult survivors felt a lack of psychosocial support. Suggestions from participants included use of informational videos for survivors, weekend education and support programs, ongoing support groups, use of the Internet, and educational newsletters. The PCPs reported a lack of general pediatric oncology knowledge and specific patient information, time constraints in their patient schedules, and having few survivors in their practices as barriers to optimal survivorship care. Further research is needed to look at the unmet educational and psychological needs of childhood cancer survivors and their parents during the critical time when they transition off treatment.

Primary Care Physicians’ Perspectives of Their Role in Cancer Care: A Systematic Review

“…30 Also unknown is whether the PCP workforce may be limited and under similar strain to hospital-based alternatives in the future. 31 Survivors of childhood cancers present an additional challenge, as PCPs encounter fewer cases and have limited paediatric oncology knowledge, 32 and there remains a dearth of evidence exploring the optimal model follow-up care for this population. 33 A clearer understanding of PCPs' preferences for involvement in cancer care is needed to explore the feasibility of a primary care based follow-up system.…”

Adolescent Survivors of Childhood Cancer and Their Perspectives of the Transition to Early Survivorship: An Exploratory Qualitative Investigation

“…A total of eight themes were identified ( Table 3). The following terms are used to communicate how many adolescents endorsed a particular theme: ''few'' (1-2), ''some'' (3)(4), ''many'' (5)(6), and ''majority'' (7)(8).…”

“…1,2 The transition to early survivorship has been defined as the time since treatment completion to the first few years off therapy. 3 To date, few studies have investigated this transition period among adolescent cancer survivors. A qualitative pilot study using focus groups investigated the experiences during the transition to early survivorship of adolescent cancer survivors aged 14-18 years old who were 1-5 years posttreatment completion, as well as their parents and communitybased primary care physicians.…”

“…A qualitative pilot study using focus groups investigated the experiences during the transition to early survivorship of adolescent cancer survivors aged 14-18 years old who were 1-5 years posttreatment completion, as well as their parents and communitybased primary care physicians. 3 Findings indicated adolescent survivors were in limbo as they attempted to regain a sense of normalcy and reintegrate into the school setting with peers. Adolescents and parents also perceived a lack of information about the transition process and expressed interest in receiving information about late effects and options to access psychosocial support.…”

“…Adolescents generally had little knowledge of late effects and believed primary care physicians had limited knowledge of such information. 3 Another exploratory study investigated the identity development of 12 adolescent and young adult cancer survivors 12-20 years old and their perceptions of their physical and mental health during the early survivorship period. 4 Findings revealed survivors recognized that their identity development was significantly impacted by the cancer experience.…”