Childhood Cancer Survivors’ Adherence to Healthcare Recommendations Made Through a Distance-Delivered Survivorship Program

Abstract

Purpose Ongoing survivorship care allows childhood cancer survivors the opportunity to address treatment-related health problems and improve their quality of life. However, many survivors do not adhere to their healthcare professionals’ recommendations and the factors supporting their adherence remain unclear. Patients and Methods Long-term childhood cancer survivors completed the “Re-engage” program, which assessed survivors’ heath needs and provided individualised recommendations for health interventions and surveillance developed by an expert multi-disciplinary team (MDT). We measured survivors’ recall of, and adherence to, their individualised healthcare recommendations at one and six months post-intervention. We conducted a series of univariate negative binomial regressions to investigate factors associated with the total number of recommendations that were correctly recalled and adhered to. Results We analysed the data of 25 childhood cancer survivors who participated in Re-engage (mean age = 31.9 years). On average, survivors were provided with 6.6 recommendations (range = 1–11). Survivors accurately recalled receiving 3.0 recommendations at one month post-intervention and 1.9 at six months. Survivors had adhered to an average of 1.3 recommendations by six-month follow-up. In total, 56% of participants reported that they did not adhere to any recommendations. By six-month follow-up, greater adherence to MDT recommendations was associated with having a history of a second cancer ( B = 1.391; 95% confidence interval [CI], 0.686 to 2.097; p < 0.001) and reporting a greater level of worry about late effects ( B = 1.381; 95% CI, 0.494 to 2.269; p = 0.002). Conclusion Survivors reported sub-optimal levels of adherence and demonstrated limited recall of their healthcare recommendations. Effective communication of recommendations and clear discussion of barriers limiting adherence, coupled with late effects education, may be critical to ensure that survivors engage with their recommendations, to improve their quality of life and health outcomes. Trial Registration Number ACTRN12618000194268.

Nutritional assessment and dietary intervention among survivors of childhood cancer: current landscape and a look to the future

“…Additionally, these reinforce the utility of structured web-based curriculums, like the HEAL initiative, in providing widereaching, dedicated, and cost-effective lifestyle guidance and education to parents of CCS (69). The availability and scope of long-term survivorship care after childhood cancer is highly variable and depends on factors such as geographic location, treating institution, and local/regional resources (62,70). Infrequent clinic visits, limited time, and insufficient resources are several systemic factors that limit healthcare providers' ability to provide ongoing, comprehensive education/counseling and meaningful lifestyle interventions (63).…”

“…Nevertheless, Touyz et al found that both adolescents and their parents preferred face-to-face intervention to a web-based one ( 68 ). The lack of consensus regarding an optimal intervention approach is compounded by studies like that of Alchin et al, who found that AYA survivors exhibit limited recall and poor adherence to healthcare recommendations despite the use of a variety of communication modalities for education delivery ( 70 ). In an effort to overcome some of these unique hurdles contemporary investigations are incorporating novel approaches alongside more conventional strategies, such as creating a CCS-directed cookbook and providing guided lifestyle coaching sessions ( 71 , 76 ).…”

“…The availability and scope of long-term survivorship care after childhood cancer is highly variable and depends on factors such as geographic location, treating institution, and local/regional resources ( 62 , 70 ). Infrequent clinic visits, limited time, and insufficient resources are several systemic factors that limit healthcare providers’ ability to provide ongoing, comprehensive education/counseling and meaningful lifestyle interventions ( 63 ).…”

“…It has been suggested that CCS, and AYAs in particular, could significantly benefit from such technology-based programs (62). In fact, in recent years CCS studies have increasingly opted for remote (telephone, mobile application, telehealth) intervention strategies as these are typically more cost-effective, accessible to those living in rural and/or remote areas, and preferred among younger groups (60,(68)(69)(70)(71). Nevertheless, Touyz et al found that both adolescents and their parents preferred face-to-face intervention to a web-based one (68).…”

Childhood Cancer Survivors’ Reported Late Effects, Motivations for Seeking Survivorship Care, and Patterns of Attendance

“… 38 The relationship between worry about cancer-related health problems and its influence on survivorship care engagement appears to be complex. 39 , 40 Adequately educating survivors about their risk of late effects, and the appropriate level of risk-based surveillance needed (eg, GP-led survivorship care vs specialist-led care), without raising their anxiety remains a significant challenge. 40 However, this is important to overcome as risk-stratified models of care become increasingly important to alleviate the pressures of the growing number of survivors on limited services and resources that are available.…”