A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance?

Abstract

As long-term childhood cancer survivors (CCS) are at risk for late effects, ongoing medical care is crucial to detect and treat physical illnesses as early as possible. However, previous research from around the world has shown that many adult survivors did not participate in long-term medical follow-up. This study aimed to provide insight into German survivors’ care situation, with a particular focus on barriers to follow-up care. We investigated a sample of adult CCS (N = 633) (age M = 34.92; SD = 5.70 years) drawn from the German Childhood Cancer Registry’s oldest cohort (> 25 years after diagnosis). Our analyses included data from a standardized medical examination, a self-report questionnaire, and in-depth interviews with a subsample (n = 43). Half of the participants (n = 314, 49.6%) reported participating in some kind of medical follow-up. In a logistic regression analysis, attendance of medical follow-up care was associated with higher age. Reasons for non-attendance were assigned to four categories: lack of information about medical follow-up and/or its purpose (n = 178), termination by the health care provider (n = 53), structural barriers (n = 21), and emotional-motivational aspects (n = 17). The interviews contributed to a better understanding of how these reported barriers played out in the care of individual survivors. Further, they revealed that some survivors currently in medical follow-up had had periods without follow-up care in the past—which were also in many cases related to a lack of information, both on the part of health care providers and CCS themselves. The results indicated that a large proportion of long-term CCS do not receive the recommended follow-up care. Further, there is a great need for more information regarding the aims of long-term medical follow-up and available offers. This is an important prerequisite for CCS to make informed decisions.

Barriers to Receiving Follow-up Care Among Childhood Cancer Survivors

“…CCS felt uninformed about how the healthcare system works and how to make it work best for them. This confirms what has been found in qualitative research; young adult CCS often report difficulty navigating the healthcare system, report struggling to coordinate their care due to a lack of knowledge and skills to access care, and lacked information about the purpose of medical follow-up 23,24 . Identifying specific knowledge gaps and increasing interdisciplinary collaboration to reduce the burden on CCS to coordinate their care could improve adherence to follow-up guidelines.…”

“…The M age of our sample, 25 years, highlights that these logistical barriers are likely particularly difficult for young adult CCS who are members of the workforce and may have families that depend on them 26,27 . This aligns with prior research in CCS identifying that macro-level barriers, like difficulty booking appointments, is a common barrier to follow-up care, 24,28–30 and with research among young adults with childhood chronic illnesses that experienced transportation concerns and scheduling changes as barriers to transitioning to adult care 31,32 . This study extends these general findings by examining the item-level barriers; we found that CCS reported the lack of after hours and weekend clinic availability and difficulty taking time off work as specific barriers to scheduling appointments for follow-up care.…”

“…This confirms what has been found in qualitative research; young adult CCS often report difficulty navigating the healthcare system, report struggling to coordinate their care due to a lack of knowledge and skills to access care, and lacked information about the purpose of medical follow-up. 23,24 Identifying specific knowledge gaps and increasing interdisciplinary collaboration to reduce the burden on CCS to coordinate their care could improve adherence to follow-up guidelines. Patient navigation and home telehealth with automated messaging are 2 potential system-level interventions to improve CCS care coordination.…”

Health Care Transitions Among Adolescents and Young Adults With Cancer

“…This may reflect a unique barrier among survivors of AYA and other cancers as cure of the underlying cancer likely contributes to lack of personal knowledge and subsequent misperceptions about risk of adverse late effects of cancer treatment justifying the need for lifelong survivorship care. 68,69 Of equal importance are structural barriers to care, 69 including disparities to access on the basis of income, race/ethnicity, or sex; the direct and indirect costs of care (copayments and health insurance); limited transportation options to the treating institution; and others. 70 Provider-level barriers may also impede successful and seamless transition.…”

Supportive care needs of adolescents and young adults 5 years after cancer: a qualitative study

“…This lack of compliance may be multifactorial (e.g., unmet needs of psychological support about fear of recurrence, distance of care facilities from home, lack of information about the importance of follow-up or existing services, motivational aspects, etc. ; Ernst et al, 2022 ), yet numerous issues about the real needs of AYA survivors of childhood and adolescent cancer in the long term have received little attention. The investigation of unmet supportive care needs may serve to demonstrate inadequacies in the support provided by health professionals ( Baudry et al, 2019 ); this exploration therefore seems paramount to fill gaps and adapt existing follow-up care and programs.…”