Supplementary Box 1 Examples of Barriers to Effective Care for the Late Effects of Childhood

Supplementary Box 1 | Examples of barriers to effective care for the late effects of childhood cancer

Barriers to the effective provision of care for the late effects of childhood cancer can relate to survivor, care-provider, and health-care domains. These barriers, as well as the opportunities they raise with regard to the PFC, are outlined below.

Survivor issues

Barrier: Lack of knowledge and/or understanding of treatment history.S1–S3Whereas the lack ofsurvivorknowledge/understanding of the treatment history can be attributed in part the inadequate communication of cancer and treatment information to survivors by clinicians and/or parents, the communication problems might be complicated further by varying levels of survivor health literacy and overall literacy,S4,S5provider–patient cultural and language discordance,S6,S7 and general issues related to health-care disparities associated with race/ethnicity and socioeconomic factors that have been explored across a wide range of cancers.S8–S12Regarding knowledge-seeking behaviours, increasingly individuals from minority and underserved groups rely on mobile platforms (for example, Smartphones and Tablets) to access the Internet for information about health issues.S13–S15Opportunity for PFC: To provide point-of-care education and information regarding treatment history, care plans, and survivor education in alignment with survivor health literacy,and cultural and other non-medical influences on health-care behavioursusing appropriate communication tools.

Barrier: Lack of transportation to care sites.S16,S17Transportationavailability to obtain needed services is often related directly to many of the health disparity issues referred above—people lacking resources simply cannot afford to travelto obtain needed health-care services.S18,S19This barrier to effective cancer follow-up care might pose a greater problem in regions wherepublic transportation services are less available, particularly rural areas.Opportunity for the PFC: to decrease the necessity for survivors to travel outside of their locale to obtain appropriate follow-up care.

Barrier: Lack of trust in their provider.S20Concerns about the knowledge levels and abilities of providers—especially non-oncologist providers—to provide appropriate care related to late/long-term effects of cancer treatment have been documented.S21–S24 One solution to this problem might rely on developing and supporting appropriate oncologyprimary-care-providercommunity-support teams and building trust among survivors that they are receiving high-quality care from a provider who knows his/her role, has adequate information to act on issues that are within his/her purview, and understands when to refer the survivor to another provider. Opportunity for the PFC: To educate primary-care providersor other clinicians caring for childhood cancer survivors, improve communication about treatment history and care plan implementation between and among clinicians and survivors, and enhance the coordination of survivor follow-up care.

Care-provider issues

Barrier: Lack of knowledge about late effects of childhood cancers.S25–S27Many care providers have limited knowledge about late and long-term effects of childhoodcancer treatment and might see no, or only one or a few childhood cancer survivors in their practices.S28The value of approaches that continue to involve oncologists in the care of cancer survivors, together with primary-care providers, has been described; as has the recognition that computerized decision support and other electronic communications might have important parts to play.S29,S30Opportunity for the PFC: to provide just-in-time knowledge about late effects and their screening to care providers for purposes of care coordination and enhancing access to care.

Barrier: Inability to manage all facets of survivor care.S16,S17Apart from clinical issues, there are a variety of additional elements of survivor care (for example, psychosocial, emotional, educational, vocational, insurance) that need to be addressed.S31Opportunity for the PFC: to develop, in upcoming PFC versions, transition and support resources to meet these non-medical challenges that confront survivors.

Barrier: Inability to devote sufficient time to the assessment of late effects during care visits.S32Limited time available to providers to obtain the cancer treatment history and assess and discuss the risks related to late effects has been identified as a barrier to achievement of quality cancer follow-up care, although primary-care physicians have expressed the desire to provide (with appropriate support) follow-up care to survivors.S32,S33In addition, the potential efficiences that might be gained from better use of treatment summaries and care plans in addressing cancer survivors needs have been noted.S34 Opportunity for the PFC: to bring further efficiencies to the delivery of care to cancer survivors by sharpening the focus on likely health risks and prompting attention to other issues that impact survivors’ health and well being.

Health-care system issues

Barrier:Lack of coverage under patients’ health insurance and, therefore, inability to fund the care required.S35,S36This is an issue that is not amenable to a solution solely through any clinical or educational intervention, but that will require health policy actions in the USA, and perhaps in other countries where national health services are not available.In the USA, there are indications that this problem might be lessening somewhat through implementation of the Affordable Care Act (ACA) that went into effect in March 2010.S37Expectations have been voiced that “Childhood cancer survivors will likely benefit from assistance in how to access and use the new health care reform provisions (for example, Medicaid expansion, expansion of parents’ insurance, and mandatoryprimary-care coverage).”S38 Opportunity for the PFC: to enhance service availability through more-appropriate distribution of care responsibilities across service systems and providers, and to provide in future versions increased information about how to explore health insurance coverage options.

Barrier: Problems or communication breakdowns in referral networks.S20,S36Currently systems of care are providedby care organizations and independent care providers operating in different locales using different medical and healthrecord systems—including paper-based systems—that often cannot talk to each other or facilitate sharing of information that might be critical to provision of timely and appropriate health care to cancer survivors and to other individuals with health issues.S39The passage of the 2009 USHITECH ActS40offers incentives for providers to implement medical/health record systems (EMR/EHR systems) that have potential to facilitate referrals and share information to improve care. Opportunity for the PFC: to function as a suppprt tool that is not platform dependent but that can be easily shared across provider settings, with future versions to feature increased integration with EMR/EHR systems as standards for interoperability evolve.

Barrier: Lack of professional training opportunities for care givers.S20,S27,S36The need for training care professionals to deliver high quality care to survivors of cancer has been articulated by many leading cancer-care organizations and thought leaders in the clinical care community.S20,S41–S43 Opportunity for the PFC: to extend its reach as a “just-in-time” learning resource to primary care and specialty care providers, as well as non-professional caregivers, faced with the challenges posed in providing follow-up care to childhood cancer survivors.

Abbreviations: EMR/EHR, electronic medical record/electronic health record; HITECH, Health Information Technology for Economic and Clinical Health; PFC, Passport for Care.

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