Evaluating and providing quality health information for adolescents and young adults with cancer

Abstract

Adolescents and young adults (AYAs, 15–39 years old) are an ideal population to benefit from the ever-expanding number and variety of cancer information and health resources available via the Internet and other digital platforms. However, the ability of individual AYAs to fully utilize such resources depends on their degree of health literacy. Across the trajectory of cancer care, an important role for the oncology clinician is assisting AYAs and caregivers in accessing quality health information consistent with their level of health literacy. Working from the premise that all AYAs with cancer and their caregivers deserve to be empowered with maximal knowledge about their condition, this review provides information to assist oncology clinicians in (1) understanding the variety of contemporary online resources that are currently available, including their strengths and limitations; (2) evaluating the quality of health information; and (3) recommending specific health information resources to their AYA patients.

1 |. INTRODUCTION

Information Age, Computer Age, Digital Age, and New Media Age—whichever moniker one prefers, they all point to the same reality: we live in a historical era that began in about the 1970s with the digital revolution, has been supported by the proliferation of powerful computers, and is defined by unprecedented levels of information proliferation, storage, utilization, and exchange. Health care has been both aided and challenged by these events. On the provider side, electronic health record systems have revolutionized the way patient-level health data are gathered, organized, accessed, and analyzed. In all domains of medical research, the pace of discovery has accelerated with informatics systems that support team science and rapid dissemination of findings. On the patient side, the Internet has democratized health information through direct access to research findings and a plethora of websites and other online resources that are intended to improve knowledge and expand care options.

At the nexus of these two worlds is health communication, defined by the United States Centers for Disease Control and Prevention as the study and use of communication strategies to inform and influence individual decisions that enhance health.¹ Health communication is concerned with how specialized knowledge is translated and transferred from professionals to patients in order to improve health outcomes. Encompassing activities that range from collecting background information on a particular topic to developing and delivering content to patients, health communication can be verbal or written, which in today’s world must include digital strategies. When considering patient populations amenable to health communication that leverages all the advantages of living in the Information Age, it is difficult to imagine one more suitable than adolescents and young adults (AYAs, 15–39 years old), who grew up during this era and are considered “digital natives.”² Yet, recent research documents that timely receipt of relevant and usable health information is an unmet need for AYAs.³ Other research indicates that health information provided to patients is commonly too complex or ineffectively communicated by providers other than health educators.⁴ Therefore, the purpose of this article is to assist the oncology clinician in optimizing health communication for AYAs diagnosed and treated for cancer in the Information Age. The approach is to review the expanding types of different but complementary sources for health information, criteria for assessing the quality of health information, the concept of health literacy as mediating receipt of health information, and finally examples of health information sources relevant for AYAs. Although the principles of evaluating and providing quality health information are not specific to AYAs, they are no less essential and need to be adapted accordingly.

2 |. TYPES OF HEALTH INFORMATION

When diagnosed with cancer in today’s digital world, it is very likely that an AYA patient or caregiver will turn to the Internet to seek medical information. “Dr. Google” is commonly used to search symptoms, treatments, side effects, outcomes/statistics, reviews of health providers and institutions, and resources to facilitate coping and to manage the financial burden of treatment.²⁹

With new websites continually being added to the Internet, it can be overwhelming for newly diagnosed patients to find reliable information easily. A clinician’s understanding of the different types of digital health information is vital in guiding patients to appropriate resources, especially as information needs evolve across the care continuum. For example, at diagnosis a trusted provider can suggest sources that augment basic information about cancer types, treatment, and prognosis. After completion of therapy, sources can be offered that address survivorship-focused issues, including need for late effects monitoring, workplace accommodations, coping, and financial toxicity. Patients should be invited to return with new or unanswered questions needing clarification. Additionally, patients should be taught how to vet and utilize health information materials, as discussed in Table 2. Indeed, AYAs can benefit from fundamental education about what information they should have, and not only where to find it. For older adolescents and emerging adults, recognition of the need for useful health information is itself an important developmental goal. At the same time, providers should emphasize that online information is not a substitute for individualized care from a qualified provider.

TABLE 2.

Guidelines for evaluating the quality of digital health information^44–46

Source	Key issues	Desired attributes and cautions
Websites	Purpose	• Clearly stated • Content current and consistent with other sources
	Reliability and validity	• Shows author names, credentials, contact information, dates of latest update or revision, copyright information • Shows institutional-organizational affiliations or sponsorships • Author perspective objective and impartial
	Source(s) of information	• Clearly listed • Cited sufficiently for verification • Information created by site developers distinct from external sources
	Links to external sites	• Current • Appropriate • Related to topic • Free of advertising
Social media	Source of account/profile	• Trusted organizations (government, educational institutions) • Account/profile links back to primary website and vice versa
	Designation of verification	• Visible “verified blue badge” indicates account is authentic
Blogs and support forums	Accountability	• Who runs forum clearly stated (may be third party) • Funding source stated • Forum is moderated and reviewed by experts • Links leading to other sites clearly indicated
	Privacy	• Personal information collected clearly stated • Site is secure
Mobile apps	Accuracy of content	• Often not written or reviewed by experts
	Identity of creator-publisher	• Clearly described (if not, download app with caution) • Trusted organizations (government, educational institutions) • Account/profile links back to primary website and vice versa
	Use of mobile app as health care tool	• Benefits, risks, and value not well studied • Security of personal data sharing confirmed

2.1 |. Digital sources of information

Digital sources of information include any electronic resource published on or delivered by the World Wide Web, and ultimately powered by the Internet. The following are some common digital information source types including examples and descriptions.

2.1.1 |. Websites

Websites are a collection of web pages, which are displayed in a web browser such as Microsoft Internet Explorer, Mozilla Firefox, Google Chrome, or Safari. Using search engines such as Google, patients and caregivers will likely be directed to websites that display prominently in search results. These may include websites for governmental organizations such as the US National Institutes of Health and the National Cancer Institute (NCI). Sites such as the American Cancer Society or other nonprofit organizations involved in research, fundraising, and the provision of support also appear frequently. AYAs should be cautioned that commercial advertisements within Google may be triggered by their searches, designed to attract customers for products and services of unknown value.

2.1.2 |. Social media

With the ever-increasing popularity and utility of social media companies, such as Facebook, Twitter, and Instagram, many governmental, private, and nonprofit cancer organizations reach their target audiences through these platforms. This technology is used to promote research, fundraising efforts, and information about upcoming support activities, educational conferences, and advocacy events. This technology also allows users to interact with these organizations and other users via comments and the sharing of personal photos and experiences.

2.1.3 |. Blogs and support forums

These are generally online platforms where patients and caregivers can interact virtually to exchange emotional support and share resource information. Intentionally or not, many users request and receive health information based on personal experiences and anecdotes from other patients and caregivers. Professionally moderated online support groups exist, where participants are typically prescreened for group suitability and to review informed consent, limits to confidentiality, and ground rules for communication and conduct.

2.1.4 |. Mobile apps

Even for patients/families without computer-based Internet access, smart phone technology has enabled many to stay continuously connected and obtain and share health information via mobile software applications, also known as “apps.” Apps are software programs specifically developed to run on a mobile device usually with one themed purpose, such as playing music (e.g., Pandora or Spotify) or facilitating shopping (e.g., Amazon Mobile). There are mobile applications for health, fitness, nutrition, weight loss, and mental health. Many apps geared toward educating the cancer population assist users with activities such as tracking symptoms, side effects and exercise, managing medical information, and building a list of questions for medical providers. Many are free of charge, while others require purchase.

2.1.5 |. Patient portals

A patient portal is a secure online website that gives patients 24-h access to personal health information from any location having an Internet connection.⁵ Using a secure username and password, patients can view personalized health information such as discharge summaries, medications, and test results. Some patient portals allow patients to message providers securely, request prescription refills, schedule and re-schedule appointments, and view educational material.

2.1.6 |. News aggregators

Sites that collect or “aggregate” news items and information across the Internet are termed news aggregators. Examples are Reddit, Huff-Post, and Yahoo News-Health. Users can “subscribe” to news feeds and receive content based on preference for subject matter and original sources, including health information. Many cancer-related organizations feed information to these sites.

2.1.7 |. eBooks

An eBook is an electronic version of a printed book that has been specifically designed for reading on a computer or handheld device, or a book expressly written and designed in digital format without a print equivalent.

Table 1 summarizes several categories of digital information sources, their features, and illustrative examples drawn from the authors’ clinical experience.

TABLE 1.

Sources of digital health information

Type of source	Descriptiona	Examplesb
Websites	• A group of World Wide Web pages usually containing hyperlinks to each other and made available online by an individual, company, educational institution, government, or organization • Typically, the first place for “searches” in order to gather information on a variety of health-related topics • Ability to print and “share” content via e-mail and social media	• American Cancer Society (www.cancer.org) • Ulman Cancer Fund for Young Adults (https://ulmanfund.org)
Social media	• Forms of electronic communication through which users create online communities to share information, ideas, personal messages, and other content (such as photos and videos) • Accessible on computers as well as smartphones and tablets	• Facebook (https://www.facebook.com/) • Twitter (https://twitter.com/) • Instagram (https://www.instagram.com)
Blogs and support forums	• Online platforms where patients, family members, and caregivers can interact virtually to give and receive emotional support and share resource information • Professionally moderated online support groups	• Lacuna Loft (https://lacunaloft.org/young-adult-cancer-hangout/) • CANCERcare (https://www.cancercare.org/)
Mobile apps	• A type of application software designed to run on a mobile device, such as a smartphone or tablet computer • Available for health, fitness, nutrition, weight loss, and mental health	• NCCS Pocket Cancer Care Guide (https://www.canceradvocacy.org/resources/pocket-care-guide/) • CURESEARCH/CANCERCARE (https://curesearch.org/CureSearch-CancerCare-App)
Patient portals	• A secure website that gives patients online access to their electronic health record • Patients can view health information such as discharge summaries, medications, and lab results • Some allow messaging providers to request prescription refills, schedule appointments, and view educational material	• My USC Chart (https://myuscchart.keckmedicine.org/) • My KIDS Patient Portal (https://www.chla.org/mykids-patient-portal)
News aggregators	• Sites that collect or “aggregate” news items and information • Users can “subscribe” to feeds to receive content based on preference	• Yahoo News (https://news.yahoo.com/tagged/health/) • Kaiser Health News (https://khn.org/)
Electronic books (eBooks)	• An electronic version of a printed book that has been specifically designed to be read on a computer or handheld device • Provide information on cancer treatment, symptom management, and support resources	• A guidebook for Young Adults Facing Cancer (https://ulmanfoundation.org/wp-content/uploads/2018/11/noway_fullbooklet.pdf) • 10 To Thrive (http://www.thrivesurvive.org/10tothrive)

^aDrawn from the US National Institutes of Health (https://www.nia.nih.gov/health/online-health-information-it-reliable) and Ref. 46.

^bExamples are illustrative and drawn from clinical practice experience of the authors.

2.2 |. Printed sources of information

The heart of health communication is the clinical encounter between the health care provider and the patient, family, and caregivers. Clinical experience and research suggest that a substantial proportion of AYA cancer patients do not routinely use digital technology and prefer health information delivered in print form such as books, magazines, newspapers, and medical brochures, or verbally from a trusted health professional.⁶ One French study of noncancer AYAs conducted in 2010 showed that 78.7% reported being adequately informed by other means, including written information.⁷ The key point is that health information needs to be personalized to the form and level of sophistication likely to be most useful to the patient and caregivers, including printed material in a patient’s primary language for those who prefer it.

3 |. HEALTH LITERACY: DEFINITION AND SIGNIFICANCE

Provision of health information to AYA patients and their caregivers is an essential part of patient-centered care. It can serve as a means by which patients become more active participants in their health, which can have a positive effect on health outcomes.⁸ Health information also serves as the cornerstone of informed consent. It is therefore crucial for the health care provider to provide health information that is calibrated to the user’s level of health literacy. Health literacy can be defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and the services needed to make appropriate health decisions.⁹ Health literacy encompasses numeracy skills, such as measuring medications and reading nutrition labels, as well as oral communication, culture, and general health knowledge. Some definitions have begun to include the ability to navigate the health care system and the Internet.^10,11 It also involves the medical provider’s ability to communicate health information effectively, their awareness of patient preferences, and their willingness to engage in open dialogue with patients to ensure their understanding.¹²

The concept of health literacy has been steadily gaining traction since being introduced in the 1990s.¹³ In 2010, the US Department of Health and Human Services created the “National Action Plan to Improve Health Literacy,” which aims to engage key stakeholders, including health care professionals and individuals/families, in a multisector effort to improve health literacy.¹⁴ In the same year, the signing of the Affordable Care Act, which directly refers to health literacy four times, highlighted the need for greater attention.¹⁵ Similarly, the Plain Writing Act, which requires the federal government to write all new publications and forms in a “clear, concise, well-organized” manner, was also signed into law in 2010.¹⁶ Finally, in 2018 the Joint Commission relaunched its SpeakUp campaign, containing materials formatted for easy reading to address low health literacy.

Health literacy for AYAs and older adults has been formally surveyed/assessed in the United States twice during the past 26 years; the 2003 National Assessment of Adult Literacy (NAAL) was the first large-scale, national assessment to measure health literacy. NAAL, which assessed the English literacy of over 19,000 Americans including AYAs age 16 and older, examined how well Americans performed tasks with printed health information. Results of AYAs (15–39 years old) were not delineated from the study group as a whole. Task proficiency was assessed for tasks including using a table, interpreting a prescription label, reading a pamphlet, and reading preprocedure instructions. Only 12% of those surveyed were classified as “proficient” in such tasks. Although 53% had intermediate health literacy skills, over one-third of adults were in the basic and below-basic groups.¹⁷ Numerous research studies have pointed to low/limited health literacy as a potentially modifiable factor significantly associated with high mortality rates and low treatment/medication adherence.^18,19 For cancer patients, health literacy is particularly important given the relationship between making life-changing decisions about treatment while also navigating health care systems.²⁰ Though some studies involving AYAs with a chronic illness have yielded mixed findings between level of health literacy and medication adherence, low/limited health literacy has been associated with engaging in risky behaviors, such as smoking, which is a sentinel for other risk behaviors in AYA cancer patients.^21,22

Health literacy comprises three levels: functional health literacy (obtaining relevant health information and applying that knowledge when performing tasks), interactive health literacy (the ability to process health information and derive meaning from different forms of communication), and critical health literacy (critical analysis of health information in making health decisions).²³ In a study of older adults in England, one-third demonstrated poor functional health literacy.²⁴ Similarly, Australian population data indicate that only one-third of AYAs (15–29 year olds) have adequate or better health literacy.²¹ Improving health literacy and active engagement in care may be especially relevant for AYAs, as increasing autonomy is normative for their life stage.²⁵ In regard to acquiring health literacy, AYAs are distinctive inasmuch as their increasing capacity to comprehend complex information is coupled with at least three other components of emerging autonomy: insight into the need for health information and how it supports self-determination, and the willingness and acquired skills to engage in effective medical decision-making.²⁶ In order for the health care system to respond appropriately to the health literacy needs of AYAs compared with older adults, more research is needed.

While individual health literacy levels are not predictive of digital technology use, it influences the time spent using technology for health-related matters.^27,28 When searching for health information, individuals with lower health literacy preferentially use social media networking sites and health-related apps rather than search engines with higher quality resources.²⁷ The large volume of online information can overwhelm patients with lower health literacy who report difficulty in locating, evaluating, and understanding health information.²⁸ Patients with lower health literacy tend to assign higher quality ratings to low-quality material.²⁸ This results in increased difficulties for this patient group as they are exposed to incorrect or complex information with limited skills for interpretation, which may lead to negative health decisions.²⁹

Understanding different types of digital health information, as well as becoming aware of the varying degrees of health literacy, may help clinicians guide AYAs to appropriate resources that meet their information and learning needs. For AYAs with lower health literacy, information should be delivered using formats such as pictures, videos/DVD, radio/audio recording, text message, or information prescriptions.^30–37 When used, these formats improve health knowledge, information recall, health behavior, and patient satisfaction.³⁸ Drawing from the general population, other approaches include routinely assessing health literacy, preparing information that is easily accessible and understandable, avoiding technical language and clinical jargon, and devoting more time connecting patients with available online information and support networks.³⁹

4 |. EVALUATING AND SHARING DIGITAL HEALTH INFORMATION

Studies continue to show that the health care provider is the preferred source of information for cancer patients and caregivers.^40,41 Research also suggests that AYAs, especially those treated in adult care settings, report unmet information needs such as age-appropriate Internet sites.⁸ Therefore, it is important for providers to employ appropriate methods of sharing health information, with special attention to the different needs of AYAs treated at pediatric versus adult care facilities, differentiated information needs between AYA patients and caregivers, differing levels of literacy, and preferred type of information. ^21,42,43 AYAs can benefit from being educated about the fact that they need to be well informed to provide optimal self-care and management. This in itself is an important developmental goal of older adolescence and emerging adulthood.

Table 2 synthesizes published recommendations from NCI, the National Center for Complementary and Integrative Health, and Georgetown University Library for evaluating and utilizing online health information.^44–46 These recommendations can assist providers and health educators in vetting online resources for sharing routinely with AYAs and caregivers, as well as information brought by patients for discussion with providers. AYAs and families with better developed critical communicative health literacy can be given these recommendations to assist them in their own online searches. Given that emerging autonomy is a developmental hallmark of younger AYAs, they can be supported in this process by providing not only health information itself, but also knowledge and encouragement for accessing, evaluating, and using health information commensurate with their increasing cognitive capacity.⁴⁷ The extent to which health literacy of AYA patients is routinely assessed by providers is unclear. However, the US Office of Disease Prevention and Health Promotion recommends inclusion of health literacy assessment as part of routine clinical practice among all age, social, and cultural groups and provides a summary of best practices in health communication that can improve delivery of health information (https://health.gov/communication/initiatives/health-literacy-actionplan.asp).

5 |. SELECTED CURRENT HEALTH INFORMATION SOURCES

A vetted compilation of resources, both digital and print, can help guide patients and caregivers toward informed decision making. Table 3 offers a sound starting point for patients and caregivers seeking health information; this is not an exhaustive list, but it includes well-established, oft used sources of information for AYAs with cancer and caregivers. Examples provided in Table 3 meet the criteria for quality health information summarized in Table 2 and were drawn from the authors’ clinical practice experience.

TABLE 3.

Selected current health information resources^a,b

Website name/sponsor	Description
American Cancer Society, www.cancer.org	Comprehensive information about cancer diagnosis, treatment, and survivorship. Includes educational booklets, transportation and lodging programs, and fundraising/advocacy efforts.
BMT InfoNet, www.bmtinfonet.org	Offers patients, families, and caregivers information about bone marrow, stem cell, or cord blood transplants. Educational resources and a transplant center directory are included.
Canadian Cancer Society, www.cancer.ca	Information on cancer diagnoses and treatments, support services, and advocacy for prevention and screening. Links to services in each province or territory.
Cancer Care, https://www.cancercare.org/support_groups	Offers online support groups led by professional oncology social workers. Groups are held for 15 weeks at a time, during which members can participate by posting in the groups 24 h per day, 7 days per week.
Cancer Council Australia, https://www.cancer.org.au/	Online platform to provide information about all aspects of cancer care, research, and advocacy for patients, caregivers, and clinicians. Linkages for local “state and territory” councils and information about support groups and telephone and Internet support groups.
Cancer Support Community – Teens with Cancer*, https://online.cancersupportcommunity.org/community/forumdisplay.php?f=82	A global network offering cancer support to people touched by cancer, available through online forums and community-based centers and hospitals.
Cancer.Net American Society of Clinical Oncology, www.cancer.net	Comprehensive website includes sections for cancer types, navigating cancer care, coping with cancer, survivorship, caregiving, and research and advocacy. Includes a blog, podcasts and videos. Some information available in Spanish.
CanTeen*, https://canteen.org.au	Based in Australia, CanTeen provides broad practical and emotional support for cancer patients 12–25 years of age through online services available 24/7 and staff who offer individual counseling and peer support activities.
CureSearch for Cancer Care, www.curesearch.org	Provides patient and family education and information about childhood cancer, including research efforts, diagnoses and treatments, and psychosocial resources.
FightConquerCure*, http://fightconquercure.org/	The Steven G. AYA Cancer Research Fund is a nonprofit organization whose purpose is to raise awareness about AYA cancer and the need for research to find better ways to treat and cure young people.
HOPE for Young Adults With Cancer*, http://www.hope4yawc.org/	A nonprofit organization dedicated to connecting AYAs by providing direct financial support, a social network, and an outlet for those battling, surviving and living with cancer. Hope4YAWC focuses on providing direct financial support to young adults of age 18–40 years with cancer.
HOPE Portal Coalition Against Childhood Cancer (CAC2), https://www.anddit.com/hope-portal	Organizes and links to vetted resources related to childhood or adolescent/young adult cancer and blood diseases. Offers a robust list of organizations around the United States that provide health information, psychosocial support resources, financial assistance programs, etc.
LIVESTRONG*, www.livestrong.org	Information, support, and resources for patients and caregivers at the time of diagnosis during treatment and posttreatment. Navigation and Fertility Support services are available to patients across the United States.
National Coalition for Cancer Survivorship, www.canceradvocacy.org	Advocates for changes in how the nation research, regulates, finances, and delivers quality cancer care. Empowers cancer survivors through its publications and programs, which provide tools for self-advocacy. Convenes other cancer organizations to address nationwide public policy issues affecting cancer survivors.
PubMed, https://www.ncbi.nlm.nih.gov/pubmed/	US National Library of Medicine/National Institutes of Health PubMed comprises more than 28 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher websites.
StupidCancer*, http://i2y.org	Founded by a young adult cancer survivor. Stupid Cancer addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health, and social media.
Teen Cancer America*, http://teencanceramerica.org	Supports establishment of hospital-based AYA units to provide age-appropriate environment for patients and families.
Teenage Cancer Trust*, http://www.teenagecancertrust.org	UK-based organization that supports a network of AYA cancer care and support services, educational programs for patients and health professionals, research, and advocacy efforts.
Thrive/Survive*, http://www.thrivesurvive.org	10 to Thrive is an easy-to-navigate eBook of top 10 lists dealing with 10 different areas of a young adult survivor’s life, such as career, finance, and dating. The content in the eBook is supplied by experts, leaders, and organizations in the cancer community.
Ulman Cancer Fund for Young Adults*, https://ulmanfund.org	A variety of educational and support resources for young adult cancer patients and survivors. A downloadable eBook is a guide that helps patients navigate the treatment journey (No Way, It Can’t Be: A Guidebook for Young Adults Facing Cancer).
US National Cancer Institute, www.cancer.gov	The central website for the National Cancer Institute (NCI), the US government’s principal agency for cancer research. Free, credible, and comprehensive information about cancer prevention and screening, diagnosis and treatment, research across the cancer spectrum, clinical trials, and news and links to other NCI websites.

^aExamples provided meet the guidelines for quality health information given in Table 2.

^bList is representative, not exhaustive. Not included are many disease-specific resources offering useful information for AYAs. Most resources listed also have a social media presence, including Facebook, Twitter, and Instagram.

^*Resource focused on AYA cancer.

6 |. ACCESSING DIGITAL HEALTH INFORMATION IN DISPARITY SETTINGS

An understanding of the sociodemographic, geographic, sociocultural, and socioeconomic status (SES) of the treatment population is crucial for calibrating delivery of health information in the appropriate format, amount, and sophistication. Overall, nearly half of the world’s population has reliable Internet access, with Europeans having the highest level (79.1%) followed by Americans (66.6%), while Internet access in Asia (41.9%) and Africa (25.1%) is significantly lower. Online use has significantly increased in the last 10 years with 60–72% of 18–30 year olds reporting access in high-income countries.^7,48,49 Higher SES has the strongest influence on digital technology usage. Use of digital health information is more common among those who are employed; specifically, those in executive and manager roles use digital technology more often than manual workers.^7,50 Access to digital technology needs to be assessed and considered when providing health information. In low-access settings, printed information—in the patient’s first language at an understandable level—may offer distinct advantages.

Overall, use of digital health information by migrant populations is limited, but this issue is complex as language skills, intercultural communication, health literacy, and SES factors all play a role.^7,50,51 Access to digital health information in multiple languages is typically limited in most clinical facilities. Clinical interpreter services are typically limited and often do not have time to translate individual relevant health resources. Consequently, patients have to depend on family members or friends to accompany them to consultations and translate health information. This may lead to both inaccuracies and undesired disclosures of confidential health information. An awareness of differences in cultural context, ideology, and verbal and nonverbal communication patterns is crucial for providing health information in culturally diverse groups.⁵¹ Online language interpretation services are becoming more ubiquitous as a cost-effective alternative to in-person interpreters.

Finally, rural and regional patients face considerable barriers in accessing optimal health care services. In the AYA HOPE study conducted in 2008, approximately one quarter of AYAs reported being treated in the community setting; for some diagnoses, such as germ cell tumor, this proportion was more than one-third.⁵² Research shows that individuals with longer travel times to clinic are more likely to use the Internet for health communication than those who are closer.⁵⁰ It is uncertain whether lower SES and/or lower health literacy exacerbate this effect of rural residence. One solution for improving health care access in rural communities may be using video or audio telecommunication to deliver medical and psychosocial care.⁵³ Telehealth interventions have been shown feasible in delivering AYA care; patient satisfaction is high and telehealth does not affect the relationship and trust between AYAs and their clinicians.^54–58

7 |. FUTURE DIRECTIONS

AYAs diagnosed and treated for cancer have unmet needs for health-related information. Overall, AYAs constitute an ideal population for leveraging tools of the digital age in order to translate and transfer health information they can use to improve health outcomes. At the same time, clinical judgment is needed to guide AYA patients to sites that are credible and relevant. Additionally, certain hallmarks of the AYA population, especially those who are younger, merit special consideration when providing health information, including their emerging levels of cognitive capacity, general knowledge, and psychosocial development. Therefore, health communication for AYAs needs to be individualized using the modality preferred by the patient (see Table 4). Areas of AYA cancer care that could benefit from expanded research using digital resources include the informed consent process for participation in clinical trials, and care of patients in geographically remote locations.

TABLE 4.

Recommendations for addressing adolescent and young adult (AYA) health information challenges

AYA challenge	Recommendations
Variable level of understanding • Emerging cognitive capacity • Emerging personal autonomy • Variable extent of personal experience with information gathering, synthesis, and application in health care or other life domains	• Assess health literacy as part of patient education process • Provide plain language material • Communicate directions clearly and specify medical advice that needs to be followed (give directions orally and visually) • Refer to concrete life experiences to reinforce meaning (e.g., skill building with information activities) • Use teach-back methods to confirm understanding
Variable type and degree of social support • Younger AYAs more reliant on parents and family of origin • Older AYAs more reliant on peers and partners	• Assess social support network for caregivers able to facilitate health communication with AYA • In all age groups, include caregivers in providing health information • Use Reciprocal Teaching Technique (encourage information exchange and discussion between AYA and caregivers)
Variable preferences for health information	• Assess patient for preferred mode of health information delivery • Printed materials  ○ Utilize easy-to-read material  ○ Avoid handouts loaded with text  ○ Aim for materials balanced with whitespace • Digital/electronic resources  ○ Web content should look easy to read—both on desktop and on mobile devices  ○ Within patient portals for accessing medical records, include glossary of medical terms and basic health information.

Health Literacy Online (https://health.gov/healthliteracyonline/display/); Washington University – The Adolescent Brain: Learning Strategies and Teaching Tips (http://spots.wustl.edu/SPOTS%20manual%20Final/SPOTS%20Manual%204%20Learning%20Strategies.pdf)

Abbreviations

AYA

adolescent and young adult

NAAL

National Assessment of Adult Literacy

NCI

National Cancer Institute

SES

socioeconomic status