Childhood cancer survivor care: development of the Passport for Care

Abstract

Survivors of childhood cancer are at risk of long-term adverse effects and late effects of the disease and/or its treatment. In response to national recommendations to improve evidence-based follow-up care, a web-based support system for clinical decision making, the Passport for Care (PFC), was developed for use at the point of care to produce screening recommendations individualized to the survivor. To date, the PFC has been implemented in over half of the nearly 200 clinics affiliated with the Children's Oncology Group across the USA. Most clinician users report that the PFC has been integrated into clinic workflows, and that it fosters improved conversations with survivors about the potential late effects a survivor might experience and about the screening and/or behavioural interventions recommended to improve health status. Furthermore, clinicians using the PFC have indicated that they adhered more closely to follow-up care guidelines. Perspectives on the challenges encountered and lessons learned during the development and deployment of the PFC are reviewed and contrasted with other nationwide approaches to the provision of guidance on survivor follow-up care; furthermore, the implications for the care of childhood cancer survivors are discussed.

Figure 1

Illustrative examples of PFC pages. The screen shots show examples of a treatment summary (1); a care plan that a user can access online (2) or via an output suitable for printing (3); specific guidelines (4), with evidence rating (5) and references for each guideline linked to MEDLINE abstracts (6); and downloadable survivor education resources (Health Links; 7). This online tool thus provides valuable resources aimed at ensuring survivors and their clinicians are adequately informed of the potential late effects, and individualized recommendations for screening and monitoring. To expand the view of the screenshots, please see the article online. Abbreviation: PFC, Passport for Care.

Figure 2

Growth in PFC enrolment. The graph illustrates the annual and cumulative number of survivors enrolled in the PFC (left axis and lines). The annual number of survivors enrolled is increasing considerably each year, and in 2013 the cumulative number of survivors registered was in excess of 12,000. The number of clinics using the PFC is also presented (right axis and bars), and reveals uptake of the PFC by clinics is also increasing each year, with approximately 100 centres across the USA using the tool. Abbreviation: PFC, Passport for Care.

Figure 3

Clinic respondent estimates of the percentage of cancer survivors for whom the PFC is used, based on a survey by the PFC developers (D. G. Poplack, unpublished data). The graph shows that a large proportion of clinics (73.9%) enrolled in the PFC programme use the tool in 75% or more of visits by cancer survivors. Almost all of the clinics (around 97%) enrolled in the PFC programme use the tool in 25% or more visits by survivors, with only 2.9% not using the tool during any consultations with survivors. Abbreviation: PFC, Passport for Care.

Figure 4

Breakdown of uses of the PFC. The graph depicts the main uses of PFC outputs in cancer-survivor care in clinics that described the PFC as ‘well integrated’ or ‘partially integrated’ into clinic workflow in a survey by the PFC developers (D. G. Poplack, unpublished data), representing 93% of clinic respondents. The data demonstrate that the main applications of the PFC resources are determination of the potential late effects of cancer and recommended screening protocols, and generation of information for primary-care providers, as well as the generation of health outputs to inform and educate the survivors (follow-up recommendations, treatment summaries, and health information resources). Abbreviation: PFC, Passport for Care.