SurvivorLink

Background: Children diagnosed with cancer are living longer and the survivor population is growing. However, most survivors develop late effects of radiation and chemotherapy shortly to years after completion of therapy, and the receipt of follow-up visits that are recommended by the Children's Oncology Group (COG) is suboptimal nationally. Aims: The aims of this study are to: 1) evaluate the impact of a patient-controlled electronic personal health record (ePHR) and system (SurvivorLink) on care visit attendance, risk-based surveillance, and other secondary outcomes (i.e., patient activation, quality of life (QOL)); 2) measure the use, acceptability, and perceived usefulness of, and satisfaction with SurvivorLink; and 3) assess facilitators and barriers to implementation. Methods: This hybrid effectiveness–implementation, clustered randomized control trial (RCT) evaluates the effect of SurvivorLink among pediatric cancer survivors and their parents on receipt of follow-up cancer care. We will recruit 20 pediatric survivor clinics with half receiving the intervention and half acting as a waitlist control. Parents of survivors and survivors will complete baseline, 3 and 12 month surveys that assess SurvivorLink use, patient self-efficacy, and intentions to return for follow-up. We will use mixed methods and multi-informant assessment to assess implementation outcomes (i.e., acceptability, feasibility, appropriateness). Discussion: New approaches are needed to facilitate the receipt of long-term follow-up care among pediatric cancer survivors. This study will assess whether SurvivorLink is effective in increasing receipt of follow-up cancer care. Moreover, it will explore the influences of context and other moderators of clinical practice change in pediatric cancer survivorship.

Background: With the number of cancer survivors growing, focus on early recognition and treatment of late effects is even more imperative for life-long survivorship care. Electronic personal health records (PHR) potentially offer self-management and e-learning support which can empower the survivor, as well be used as a communication tool with healthcare providers (HCP). Methods: We developed a PHR, SurvivorLink (www.cancersurvivorlink.org), as a patient-centered tool to support pediatric cancer survivors, increase knowledge of late effects and survivor care, and promote communication between patients/parents and providers. Measures of success for a sustainable PHR implementation include adoption/use, acceptance, satisfaction and usability. The objectives of this feasibility study are to determine characteristics that predict the success of this PHR tool. An online pre-/post survey was administered to young adult survivors and parents of child survivors who registered on SurvivorLink. Results: Overall, 155 parents and 93 survivors completed the pre-test survey; 75% and 86% respectively have subsequently logged into SurvivorLink after initial registration. Individuals who used this PHR were more likely to be survivors (vs. parents; Odds Ratio (OR): 2.2, 95% CI: 1.1, 4.2). Other demographic variables were analyzed but no significant differences were found between users and non-users. Among users not aware of their need for specialized survivor care at the pre-survey, 52% reported awareness of the need for survivor care in the post-survey (vs 0% of non-users). Parents/survivors also reported high acceptance: 90% would use in the future, 82% stated it would help with advocating for survivor's health; and usability: 96% would recommend to other survivors/parents, 95% would recommend to their healthcare provider. Conclusions: SurvivorLink can improve knowledge around the importance of survivor care, and is both adopted and accepted by survivors/ parents independent of demographic differences. Research is underway to establish SurvivorLink's effectiveness as an advocacy/communication tool for survivor/parent with HCP in the self-management of their healthcare.