Development of a Primary Care-Based Clinic to Support Adults With a History of Childhood Cancer: The Tactic Clinic.

PURPOSE: Describe the development and evolution of a primary-care-based, multidisciplinary clinic to support the ongoing care of adult survivors of childhood cancer. METHODS: A consultative clinic for adult survivors of childhood cancer has been developed that is located in an adult, academic internal medicine setting and is based on a long-term follow-up clinic model available at Children's Hospital Colorado. RESULTS: The clinic opened in July 2008. One hundred thirty-five patients have been seen as of April 2014. Referrals and clinic capacity have gradually increased over time, and a template has been developed in the electronic medical record to help facilitate completion of individualized care plan letters. CONCLUSIONS: A primary care-based, multidisciplinary consultative clinic for adults with a history of childhood cancer survivor is feasible and actively engages adult primary care resources to provide risk-based care for long-term pediatric cancer survivors. This model of care planning can help support adult survivors of pediatric cancer and their primary care providers in non-academic, community settings as well.

Metrics to evaluate treatment summaries and survivorship care plans: a scorecard.

PURPOSE: The Institute of Medicine (IOM) and Commission on Cancer have called for provision of treatment summaries (TSs) and survivorship care plans (SCPs) at the end of primary cancer therapy and endorsed guidelines for content. Institutions are providing TS/SCPs but with little guidance concerning concordance with IOM recommended content. This manuscript presents a recently developed tool to allow rating of breast cancer-specific TS/SCPs as a model for assessing concordance with IOM recommendations and facilitating research and clinical fidelity. METHOD: An interdisciplinary team developed items mapped to the IOM recommendations for TS/SCP content as well as scoring rules. Dual raters used this tool to independently assess 65 completed TS/SCPs from 13 different cancer treatment facilities affiliated with the LIVESTRONG Survivorship Centers of Excellence to assess reliability. RESULTS: The final set of measures contained 92 items covering TSs and SCPs. The TS scale consisted of 13 informational domains across 60 items, while the SCP scale had 10 domains across 32 items. Inter-rater reliability within TSs indicated substantial agreement (M kappa = 0.76, CI = 0.73-0.79), and interclass correlation (ICC) was high (ICC = 0.85, CI = 0.76-0.91). For the SCP scale, inter-rater reliability was also substantial (M kappa = 0.66, CI = 0.62-0.70), as was interclass correlation (ICC = 0.75, CI = 0.62-0.84). CONCLUSION: Concordance with IOM recommendations for TS/SCP information can be reliably assessed using this instrument, which should facilitate implementation efforts, allow comparison of different TS/SCPs, and facilitate research into the utility of TS/SCPs including which elements are essential.

Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network.

BACKGROUND: The objectives of this study were to characterize survivorship models of care across eight LIVESTRONG Survivorship Center of Excellence (COE) Network sites and to identify barriers and facilitators influencing survivorship care. METHODS: Using the framework of the Chronic Care Model (CCM), quantitative and qualitative methods of inquiry were conducted with the COEs. Methods included document reviews, key informant telephone interviews with 39 participants, online Assessment of Chronic Illness Care (ACIC) surveys with 40 participants, and three site visits. RESULTS: Several overarching themes emerged in qualitative interviews and were substantiated by quantitative methods. Health system factors supporting survivorship care include organization and leadership commitment and program champions at various levels of the health care team. System barriers include reimbursement issues, lack of space, and the need for leadership commitment to support changes in clinical practices as well as having program "champions" among clinical staff. Multiple models of care include separate survivorship clinics and integrated models as well as consultative models. COEs' scores on the ACIC survey showed overall "reasonable support" for survivorship care; however, the clinical information system domain was least developed. Although the ACIC findings indicated "reasonable support" for self-management, the qualitative analysis revealed that self-management support was largely limited to health promotion provided in clinic-based education and counseling sessions, with few COEs providing patients with self-management tools and interventions. CONCLUSIONS: The CCM framework captured experiences and challenges of these COEs and provided insight into the current state of survivorship care in the context of National Cancer Institute-designated comprehensive cancer centers. Findings showed that cancer patients and providers could benefit from clinical information systems that would better identify candidates for survivorship care and provide timely information. In addition, a crucial area for development is self-management support outside of clinical care. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors may benefit from learning about the experience and challenges faced by the eight LIVESTRONG Centers of Excellence in developing programs and models for cancer survivorship care, and these findings may inform patient and caregiver efforts to seek, evaluate, and advocate for quality survivorship programs designed to meet their needs.