Adolescent and Young Adult Cancer Awareness Campaign

About Adolescent and Young Adult Cancer

Adolescents and young adults (AYA) typically refers to patients 15 to 39 years old.¹ The Centers for Disease Control and Prevention (CDC) reports that cancer is a leading cause of disease-related death for this age group.² This health awareness campaign can help your organization implement evidence-based practices when communicating about AYA cancer.

Data and Statistics

Over 89,000 AYA individuals are diagnosed with cancer every year in the United States.³ Based on available data, AYA cancer cases account for an estimated 4.5% of new cancer cases.⁴ Approximately 85.5% of AYA patients with cancer will survive five or more years after diagnosis—the highest survival percentage among all age brackets. AYA cancer survivors may also experience unique health risks later in life, such as elevated risk of cardiomyopathy, stroke, premature ovarian failure, and higher risk of hearing loss for patients whose treatments included radiation therapy to the head.⁵

Best Practices for Communicating About AYA Cancer

Acknowledge and address AYA survivors’ unique needs

• Promote resources that address unique psychosocial concerns. Educate staff and providers on available support and services that address frequently cited depression, fear, self-esteem, identity development, social withdrawal, fertility and fatigue.⁶ Survivors who receive psychosocial care report greater satisfaction.⁷
• Refer patients to psychosocial support services throughout the continuum of care. AYA patients experience high levels of distress at diagnosis and when they transition to survivorship. AYAs also experience poorer health-related quality of life compared to AYAs who have not received a cancer diagnosis.¹ 
• Emphasize peer support groups. AYA survivors seek support from individuals with similar lived experiences.⁶ Encourage the development and use of support groups—virtual or in-person—to exchange support, build community and cope with emotions.⁸
• Highlight resources that support AYA survivors returning to work. Many AYA survivors are unaware of legal and employment protections available to them.⁹ Provide education for AYA survivors who choose to return to work, as well as education on how to discuss necessary accommodations with employers. For those returning to a previous workplace, share messaging on how to discuss treatment and experience with coworkers, as well as dealing with various reactions from colleagues.
• Encourage patients to ask their health care team about survivorship care plans to help address specific AYA cancer survivors’ needs.^10,11
• Encourage AYA survivors to reduce cancer risk with modifiable health behaviors such as tobacco cessation, maintaining physical activity and healthy diets. Encourage survivors to seek support from health providers to implement behavior changes.¹

Encourage health system improvements to survivorship care and resources

• Make sure patients are provided with their treatment information and practical follow-up care needs. AYA cancer survivors need information to address concerns around late-effects of treatment, recurrence, fertility, physical and psychosocial effects of treatment, follow-up care, and financial toxicity.^10,11,12 
• Tailor resources for your audience. AYA survivors want resources and support for their age group.¹³
• Provide patients with resources on financial assistance. Survivorship care can include more than just treatment effects and screening recommendations. It can also include information about managing long-term financial toxicity.¹³
• Ensure that providers are aware of and are up-to-date on appropriate clinical trials that may benefit their AYA patients.
• Encourage providers to follow comprehensive and standardized treatment approaches that are appropriate for AYA patients with cancer.¹⁴
• The age at which a patient receives a cancer diagnosis and treatment is associated with unique social and developmental concerns.¹⁵ For example, patients 18 years and younger express concerns over high school graduation and development of social skills. Patients between 18–25 years express concerns over barriers to employment and financial independence. Patients between 26–39 express concerns about fertility issues and health insurance. Acknowledge these concerns and suggest resources to address them in patient messaging.
• Ask patients who should be involved in decision-making and make every effort to honor those requests. Parents, family members, or caregivers involved in care decisions may be important for some AYA patients.¹⁶ 
• Educate primary care providers about the unique needs of AYA survivors, as well as specific needs based on their cancer type and treatment.

Refer AYA patients with cancer to clinical trials

• Refer AYA patients with cancer to centers that offer clinical trials. AYAs have seen some gains in clinical trial enrollment compared to younger or older patients with cancer, but disparities still exist.^10,15
• Improve AYA enrollment in clinical trials. Research shows that decreased enrollment in clinical trials is an important factor in AYA patients with cancer having lower cancer cure rates than patients in other age groups.¹⁷ 
• Refer adolescents with cancer to Children’s Oncology Group institutions. As the world’s largest organization focusing on childhood and adolescent cancer research, COG referrals can increase adolescent representation in clinical trials.
• Address barriers to clinical trials by: 1) establishing trusted patient-provider relationships, 2) having a provider recommend clinical trials, 3) balancing autonomy and dependency in decision making and 4) tailoring consent forms for AYA patients.^16,18

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Communicating with Diverse Audiences

Disparities in cancer risk factors and outcomes among the general population are also persistent among AYA cancer survivors. AYA survivors, and the diverse audiences they represent, also benefit from strategies to address the specific needs of their communities, such as improving access to healthier built environments and access to health care.

Communication-related issues may also play a role in cancer disparities.¹⁹ Consider the information most useful to each diverse group (see below for specific messaging and read more on health disparities here). Tailor communication to these populations of focus with messages that also address conditions where these communities live, learn, work and play, as these social determinants of health can impact a wide range of health risks and outcomes.²⁰ To ensure messages resonate with the coalition’s intended audience, we also recommend referring to the National Networks’ existing resources and adapting messages to reflect individuals with lived experiences.

Black/African American

• Enrollment in cancer clinical trials is the lowest among Black AYAs ages 20–29 and Black male AYAs when compared to enrollment among Black children and adults.^21,22 Use tailored messaging to increase awareness of the benefits of cancer clinical trials and promote health system interventions that reduce barriers to clinical trial enrollment within these priority groups. Establish relationships with Black AYA advocates to support patient engagement and trust in research.²³
• Black AYA cancer survivors experience a greater risk of death from noncancer health conditions compared to other races and ethnicities.²⁴ Messaging geared towards providers can promote the availability and sharing of follow-up care instructions and post-cancer education with steps for maintaining health. Encourage health care teams to provide such information to Black AYA survivors.
• Among the general population, physical activity disparities by race and ethnicity begin at childhood.²⁵ Given lower rates of physical activity among Black individuals, provide tailored communication encouraging healthy behaviors early in the AYA cancer journey.

Hispanic/Latinx/o/a

• Use photonovelas as part of a communication strategy to support Hispanic/Latinx AYA survivors and caregivers and increase their awareness of survivorship care and screening for late effects.²⁶
• Hispanic/Latinx parents of AYA survivors experience greater stress than non-Hispanic parents. Messaging tailored for providers can encourage mental health screening and  referral for families of AYA survivors in long-term survivorship follow-up care.²⁷
• Latino AYA survivors with higher levels of acculturation, particularly males, have displayed more depressive symptoms. Tailor messaging to provide mental health resources to this demographic.²⁸

AANHPI (Asian American, Native Hawaiian/Pacific Islander)

• Cancer is the leading cause of death for AANHPIs.²⁹ However, this demographic is underrepresented in national cancer research initiatives and budgets.³⁰ Curate messages that engage AANHPI AYAs (and adults) in clinical trials, communicating the importance of this research in addressing health disparities.

AI/AN (American Indian/Alaska Native)

• AI/AN AYA females experience higher rates of most cancers than males.³¹ Therefore, some AI/AN messaging may include female-specific imagery and messages to ensure communications reach the most at-risk groups. 
• The most common cancer for AI/AN AYA males is testicular cancer. They are also more likely to develop lymphoma than their female counterparts. Encourage AYA body awareness to recognize symptoms and conversations about fertility preservation among AYA testicular cancer survivors.
• Between 1999 and 2019, rates of cancers for both AI/AN AYA males and females trended upward. Rates of female cancer increased 1.8% annually and rates of male cancer increased by 1.4% annually. Feature AI/AN AYA cancer survivors and advocates in messaging to raise awareness of increasing rates of cancer and encourage individuals to get the appropriate testing, diagnosis, and treatment.
• For some AI/AN patients (not just limited to AYA patients), spiritual care may be just as important as physical and mental components of care.³² Obstacles include separation from family and tribal communities, which can leave patients feeling spiritually vulnerable. Craft messages informed by the lived experiences of AI/AN cancer survivors, spiritual leaders, and community and ceremonial elders to demonstrate cultural competency in your care practices. 
• Some services may not be covered by the Indian Health Service program; however, AI/AN patients may qualify for additional coverage and protections through the Health Insurance Marketplace. Share information about these special coverage benefits to ensure AI/AN AYAs have access to robust and comprehensive care.

LGBTQI+

• LGBTQI+ AYA patients with cancer and survivors experience great financial burdens that result in compounded psychological stress.³³ Messaging should connect LGBTQI+ AYAs (at all stages of cancer care) with resources for financial relief. Emphasize mental health resources in these messages.
• LGBTQI+ patients and survivors report fears of social stigmas as well as experiencing stigma within health care settings.³⁴ Create messages that help health providers to recognize and overcome implicit bias when communicating with these patients. This may help to reduce stigma and to foster trust and honesty. 
• Many LGBTQI+ AYA patients with cancer and survivors indicate that changes in social habits, financial ability, and employment status during and after treatments resulted in feelings of isolation. Craft messaging that connects these patients with peer-to-peer and support groups. 

Female AYAs

• Both chemotherapy and radiation treatments can affect fertility in female AYAs, but some providers are hesitant to discuss fertility when available preservation options are costly, invasive, and delay cancer treatments.³⁵ Encourage patients to discuss fertility risks with doctors, and encourage provider familiarity with fertility-preservation resources. Some of this messaging should be specific to women.
• Direct female AYAs to patient-navigation resources and reproductive specialists to ease the psychosocial burden of fertility-related decision making.

SES (socioeconomic status)

• Insurance coverage can influence the survival rates of AYA patients with cancer. Patients who are uninsured may experience delays in cancer diagnosis, treatment, and access to information and support services.³⁶ Share national insurance and financial relief resources with AYA patients with cancer. (see Resources section below).
• Uninsured AYA survivors demonstrate a greater need for cancer-related information.³⁷ When tailoring messages, remind patients to request educational resources from healthcare providers both during and after treatment. Communicate with healthcare teams to proactively provide patients this information. 
• Uninsured AYAs are less likely to receive continued cancer survivorship care.³⁸ Messages should educate AYA patients with cancer on long-term risks and cancer-related complications and encourage routine follow ups that address specific risks. Messaging can also provide avenues for patients to connect with survivor support groups. Communications geared towards health care providers should remind them to share these resources with AYA survivors.
• A household income of less than $50k annually is significantly associated with lower levels of moderate to vigorous physical activity.²⁵ Encourage modifiable health behaviors related to smoking, diet, and exercise.

Rural

• AYA cancer survivors living in rural areas are more likely to die from noncancer causes compared to non-rural AYA survivors.²⁴ Tailor messages for rural AYA cancer survivors that encourage adhering to practical follow-up care. Communicate with rural health care teams to provide such information.
• For AYAs living in rural areas with limited or no access to transportation, promote telehealth resources and transportation programs to ensure they pursue and continue care.

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AYA Cancer Messages and Graphics

Download All Messages and Graphics How to Post on Social Media

Topics	Suggested Images
Topic: PSE Interventions to Increase HPV Vaccinations Keeping up with PSE interventions can help your state coalition members reach vulnerable demographics. In this example by Sanford Health, we learn how phone-calls can help increase HPV vaccination rates among AYAs. https://bit.ly/3DwouKX #cctaya #ayacancer #hpv
Topic: Supplying resources for financial assistance for AI/AN AYAs #DidYouKnow that American Indians and Alaska Natives from federally recognized tribes can access special coverage options, including the Children’s Health Insurance Program for AYAs 19 and younger? https://bit.ly/3l1Ehei #cctaya #ayacancer #aian
Topic: Using a community engagement model to develop education for Latinx AYA cancer survivors In this first-of-its-kind study, researchers used a CBPR model to develop culturally-specific education for Latinx AYAs in cancer survivorship. Learn more about this approach at https://bit.ly/3YnsZQq #cctaya #ayacancer #latinxcancer
Topic: Encouraging providers to share return-to-work resources with cancer survivors Finding employment and rejoining the workforce is one of the most common concerns for cancer survivors between 18-25. Fortunately, the Cancer Legal Resource Center can ease a return to work by helping AYA patients understand their legal rights. https://bit.ly/3Ynsd5B  #cctaya #ayacancer
Topic: Intervention-based programs to support AYA patients and their caregivers Facilitated family discussions can help young patients with cancer and their caregivers make more informed care decisions. The National Cancer Institute’s FACE-TC program provides objectives and steps for conducting three such interventions with AYAs. https://bit.ly/3HxwXhV  #cctaya #ayacancer
Topic: Awareness of Black AYA underrepresentation in clinical data Despite experiencing higher incidences of cancer than Black children and Black adults, Black AYAs are least likely to enroll in clinical trials. State coalition members can help address racial disparities by engaging Black patients aged 20-29 in ongoing studies. #cctaya #ayacancer
Topic: Interventions to reduce barriers for AYAs of lower SES When AYAs and their caretakers encounter structural barriers to care, they are less likely to seek and receive help. The CDC-recommended interventions like transportation assistance and flexible hours to assist patients with financial needs: https://bit.ly/3E7BTt5 #cctaya #ayacancer
Topic: Reaching rural AYAs via telehealth Shifts in telehealth trends during COVID-19 showed that virtual visits increase access and quality of care for adolescent patients. Using telehealth models can help state coalition members reach rurally located AYAs. https://bit.ly/3Il42PR #cctaya #ayacancer
Topic: Effective intervention tactics for Latinx AYAs in survivorship Wondering how to reach Latinx AYAs? This study found that photonovelas—visual guides similar to comic books—increased engagement in survivorship care among this population and their families. https://bit.ly/40QrprT #cctaya #ayacancer
Topic: Caring for AI/AN AYAs in mind, body, and spirit In addition to physical and mental care, American Indians and Alaska Natives with cancer may need spiritual care, too. These videos and discussion guides from Indian Health Services can help you understand and consider unique needs and stressors for AI/AN patients of all ages. https://bit.ly/3Hn7zLW  #cctaya #ayacancer
Topic: Sharing resources with young cancer survivors and their families From uncertainty about school and employment to anxiety over future health issues, survivorship can bring up a lot of questions for adolescent patients and their families. The National Children’s Cancer Society offers programs and tools that can help survivors live happy, worry-free lives. https://bit.ly/3Hxtvnt #cctaya #ayacancer
Topic: Helping providers talk with AYA parents about HPV vaccines Talking about the HPV vaccine with parents of young patients is vital to reducing the risks of certain cancers. However, these conversations aren’t always easy for physicians to navigate. These resources from the CDC can guide you through these discussions and includes materials you can give parents. https://bit.ly/3Rt5jY4 #cctaya #ayacancer
Topic: Communicate fertility risks to female AYAs with cancer For AYA women facing cancer treatments that could affect fertility, timing is key. Delays in communicating fertility preservation information to patients could result in rushed decision making and/or delayed cancer treatments. Be sure to communicate risks and refer patients to fertility experts as soon as possible. https://bit.ly/40qgRQ0 #cctaya #ayacancer
Topic: Making providers aware of unique needs/hardships for LGBTQ AYAs #DidYouKnow that LGBTQ AYAs with cancer experience greater financial strain than other AYAs? Resources like the National LGBT Cancer Network can link these patients with resources for both financial and community support. https://bit.ly/3XnM3wk #cctaya #ayacancer #lgbtcancer
Topic: Making AANHPI people aware of common health issues AANHPI adolescents are underrepresented in cancer research, but we know that lung cancer is common among this racial demographic—even if they’ve never smoked. Talk to your doctor about routine screenings and resources to help you quit smoking. #AANHPI #cctaya #ayacancer
Topic: Connecting LGBTQ+ survivors with peer support groups Are you an #LGBTQ adolescent or young adult (AYA) cancer survivor in need of queer-specific support and guidance? Escape offers free virtual meetups where you can share your experience and hear from other queer AYAs. https://bit.ly/3Xm0xgq #cctaya #ayacancer #lgbtcancer

Download All Messages and Graphics How to Post on Social Media

How to Post to Social Media

Start by downloading the ZIP file above. Then double click the downloaded file to unzip and open the folder. Inside, you’ll find three CSV files.

• Messaging.csv contains captions for all messages in the toolkit, organized by topic.
• Bulk - Instagram.csv contains captions for all Instagram messages, along with graphics URLs that can be used to bulk schedule both text and images.
• Bulk - LinkedIn-Facebook-Twitter.csv contains captions for all LinkedIn, Facebook, and Twitter messages, along with graphics URLs that can be used to bulk schedule both text and images.

Inside the main folder, you’ll also see two sub-folders containing the messaging graphics for all major platforms. The first folder contains rectangular images suited for use on Facebook, Twitter, and LinkedIn. The second folder contains square images suited for Instagram.

Select your platform below for additional instructions.

Facebook

1. Download the suggested graphic.
2. Highlight the corresponding message with your cursor. Right click and select “Copy.”
3. Open Facebook. If you aren’t already logged in, enter your email address (or phone number) and password, then tap “Log in.”
4. Tap the post box. This box is at the top of the News Feed. If you're posting to a group, you’ll find the box just below the cover photo. There will generally be a phrase like “Write something”or “What’s on your mind?” in the box.
5. Tap “Photo/Video” near the middle of the post screen, then select the downloaded graphic to upload and tap “Done.” Doing so adds the photo to your post.
6. Tap “Post.” It’s in the top-right corner of the screen from the app, or the bottom-right from your computer. Doing so will create your post and add it to the page you’re on.

Twitter

1. Download the suggested graphic.
2. Highlight the corresponding message with your cursor. Right click and select “Copy.”
3. Open Twitter. If you aren’t already logged in, enter your email address and password, then tap “Log in.”
4. Tap the post button. This button is at the bottom right of the News Feed. There will generally be a phrase like “What’s happening?” in the box.
5. Tap the camera icon near the middle of the post screen, or the picture icon in the bottom left of the post screen then select the downloaded graphic to upload, and add the post caption.
6. Tap “Tweet.” It’s in the top-right corner of the screen from the app, or the bottom-right from your computer. Doing so will create your post and add it to the page you’re on.

Instagram

1. Download the suggested graphic.
2. Highlight the corresponding message with your cursor. Right click and select “Copy.”
3. Open Instagram. If you aren’t already logged in, enter your username (or phone number) and password, then tap “Log in.”
4. Tap the plus sign box. This box is at the top right. Select the downloaded graphic or drag it into the box to upload it.
5. Select “Square (1:1)” for the aspect ratio, then click “Next.”
6. Ignore the filters screen, then click “Next” again.
7. Paste the caption where it says, “Write a caption…” at the top.
8. Under “Accessibility,” consider adding alt text to describe the photo for people with visual impairments.
9. Tap “Share.” It's in the bottom-right corner of the screen.

LinkedIn

1. Download the suggested graphic.
2. Highlight the corresponding message with your cursor. Right click and select “Copy.”
3. Open LinkedIn. If you aren’t already logged in, enter your email address and password, then tap “Log in.”
4. Tap “Start a post” from the main share box. This box is at the top of your profile.
5. Tap “Photo” from the top of the post screen, then select the downloaded graphic to upload and tap “Done.” Doing so adds the photo to your post.
6. Tap “Post.” It's in the the bottom-right. Doing so will create your post and add it to the page you’re on.

Bulk Scheduling

Social media management tools like Hootsuite and Sprout Social offer bulk scheduling options for uploading multiple messages at once. The spreadsheets included in the download can be adapted to fit multiple scheduling platforms or services. They are currently formatted to work with Sprout Social’s bulk scheduling option. Please review the bulk scheduling format requirements for your specific platform before posting. Messages are sorted by network.

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AYA Cancer Resources

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References

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