Aims: Continuous, lifelong survivorship care is vital for childhood cancer survivors (CCS) to address health issues that arise from their treatment, and to improve their quality of life and well-being. Yet, many survivors display sub-optimal levels of adherence to their healthcare provider follow-up care recommendations and advice. The underlying reasons for this are not well understood. This study aimed to adherence to personalized healthcare recommendations among long-term CCS participating in the "Re-engage" program, and investigated factors associated with recall and adherence to recommendations at one- and six-months post-intervention.
Method: As part of the "Re-engage" program, long-term CCS completed a thorough assessment of their cancer-related medical history and review of current health needs by a multidisciplinary team (MDT). Personalized recommendations for health interventions, surveillance, and healthy lifestyle improvements were provided. Survivors’ recall and adherence to these recommendations were evaluated at one and six months post-intervention. Factors associated with recall and adherence were analyzed using univariate negative binomial regressions.
Results: Twenty-five CCS (average age = 31.9 years) participated in the Re-engage program. Each survivor received an average of 6.6 recommendations (range=1-11). The survivor could correctly recall 3recommendations at 1-month and 2 recommendations at 6-months post-intervention. At 6-months post-intervention, 56% percent of CCS reported complete non-adherence, and the overall average was adherence to 1.3 recommendations. At 6-months follow-up, better adherence to the MDT’s recommendations was associated with a history of second cancer (p<0.001) and higher levels of worry about late effects (p=0.002).
Conclusions: The study reveals that recall and adherence to healthcare recommendations among CCS are generally low and sub-optimal. Improving adherence necessitates clear communication of healthcare recommendations, coupled with effective discussion of methods to overcome potential barriers to adherence, and late effects education. These strategies may enhance the health outcomes and quality of life for survivors.