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–S3 Whereas the lack of survivor
knowledge/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,S5 provider–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–S12 Regarding 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–S15 Opportunity 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 nonmedical influences on health-care behaviours using appropriate communication tools.
Barrier: Lack of transportation to care sites.S16,S17 Transportation availability to obtain needed services is often related directly to
many of the health disparity issues referred above—people lacking resources simply cannot afford to travel to obtain needed
health-care services.S18,S19 This barrier to effective cancer follow-up care might pose a greater problem in regions where
public 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.S20 Concerns about the knowledge levels and abilities of providers—especially nononcologist 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 oncology primary-careprovider community-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 providers or 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–S27 Many care providers have limited knowledge about late
and long-term effects of childhood cancer treatment and might see no, or only one or a few childhood cancer survivors in
their practices.S28 The 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,S30 Opportunity 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,S17 Apart 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.S31
Opportunity 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.S32 Limited 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,S33 In 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,S36 This 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.S37 Expectations 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 mandatory primary-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,S36 Currently systems of care are provided by care
organizations and independent care providers operating in different locales using different medical and health record
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.S39
The passage of the 2009 US HITECH ActS40 offers 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,S36 The 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
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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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