Drivers of COVID-19 Vaccine Intent Among Survivors of Adolescent and Young Adult Cancer: a Mixed Method Study.

BACKGROUND: Survivors of adolescent and young adult (AYA) cancer are susceptible to severe COVID-19 outcomes due to their cancer history. Drivers of COVID-19 vaccine hesitancy and willingness are largely unexplored among AYA cancer survivors. METHODS: We surveyed survivors of AYA cancer from October 2020-February 2021 who received services through an AYA cancer care program. Survey measures included vaccine hesitancy on a five-point Likert scale and an open-ended question on vaccine intent. Open-ended responses were content analyzed through two cycles of structured coding. Quantitative vaccine intent and qualitative drivers of intent were integrated during data analysis. RESULTS: Of participants who responded to the open-ended vaccine intent question (N = 300), 39.0% reported COVID-19 vaccine hesitancy. Qualitative content analysis resulted in N = 517 codes and seven content categories. The most common content category associated with hesitancy included COVID-19 vaccine development, approval, and efficacy (34.5%; p value ≤ 0.001), as well as content areas including presence of misinformation about COVID-19 in the response (4.8%; p value = 0.04), the desire for more information about COVID-19/COVID-19 vaccine (6.0%; p value ≤ 0.001), and reference to political influence on participants' intent to get the vaccine (2.5%; p value = 0.005). The most common category associated with vaccine willingness was personal perceptions of COVID-19 vaccination including protecting oneself and others (36.6% of codes; p value ≤ 0.001), followed by pro-vaccine beliefs (8.3%; p value ≤ 0.001) and trust in science (3.9%; p value ≤ 0.001). CONCLUSIONS: Common drivers of COVID-19 vaccine hesitancy among survivors of AYA cancer include concern about vaccine side effects and approval process, and misinformation. Cancer survivors COVID-19 vaccine uptake could be improved by focusing communication on drivers of willingness, motivational interviewing, and physician recommendations.

Financial burdens during the COVID-19 pandemic are related to disrupted healthcare utilization among survivors of adolescent and young adult cancers.

PURPOSE: We examined whether financial burdens occurring during the COVID-19 pandemic impacted healthcare utilization among survivors of adolescent and young adult cancers. METHODS: We surveyed survivors enrolled in a patient navigation program to obtain self-reports of delayed/skipped cancer care or other care, changes to medication obtainment, and changes to medication use since the COVID-19 pandemic began. Reported financial burdens were defined as financial toxicity in the past 4 weeks (COmprehensive Score for financial Toxicity [COST] ≤ median 21) and material hardships (range = 4-11) since March 2020. Adjusted logistic regression models calculated associations and effect modification by gender. RESULTS: Survivors (n = 341) were mostly female (61.3%) and non-Hispanic White (83.3%). Nearly 20% delayed/skipped cancer care, 35.2% delayed/skipped other care, 19.1% changed medication obtainment, and 12.6% changed medication use. Greater material hardships were associated with delayed/skipped cancer care (odds ratio (OR) = 3.13, 95% CI = 1.44-6.81) and other care (OR = 2.17, 95% CI = 1.18-3.98), and changed medication obtainment (OR = 2.72, 95% CI = 1.43-5.18) or use (OR = 4.49, 95% CI = 2.05-9.80). Financial toxicity was associated with delayed/skipped other care (OR = 2.53, 95% CI = 1.31-4.89) and changed medication obtainment (OR = 1.96, 95% CI = 1.01-3.83) and medication use (OR = 3.73, 95% CI = 1.59-8.73). The association of material hardships and any changes in healthcare utilization was greater among female compared to male survivors. CONCLUSION: Financial burdens experienced during the pandemic impeded survivors' ability to utilize necessary healthcare, with worse impacts among female survivors. IMPLICATIONS FOR CANCER SURVIVORS: Delayed or skipped healthcare may lead to an increased cancer mortality or severity of therapy-related conditions. Providing resources that enable survivors experiencing financial burdens to continue critical cancer and preventive care during the COVID-19 pandemic is a priority.

HIAYA CHAT study protocol: a randomized controlled trial of a health insurance education intervention for newly diagnosed adolescent and young adult cancer patients.

BACKGROUND: For adolescent and young adult (AYA) cancer patients aged 18 to 39 years, health insurance literacy is crucial for an effective use of the health care system. AYAs often face high out-of-pocket costs or have unmet health care needs due to costs. Improving health insurance literacy could help AYAs obtain appropriate and affordable health care. This protocol illustrates a randomized controlled trial testing a virtual health insurance education intervention among AYA patients. METHODS: This is a two-arm multisite randomized controlled trial. A total of 80 AYAs diagnosed with cancer in the Mountain West region will be allocated to either usual navigation care or tailored health insurance education intervention with a patient navigator that includes usual care. All participants will complete a baseline and follow-up survey 5 months apart. The primary outcomes are feasibility (number enrolled and number of sessions completed) and acceptability (5-point scale on survey measuring satisfaction of the intervention). The secondary outcomes are preliminary efficacy measured by the Health Insurance Literacy Measure and the COmprehensive Score for financial Toxicity. DISCUSSION: This trial makes a timely contribution to test the feasibility and acceptability of a virtual AYA-centered health insurance education program. TRIAL REGISTRATION: ClinicalTrials.gov NCT04448678. Registered on June 26, 2020.

"I thought there would be more I understood": health insurance literacy among adolescent and young adult cancer survivors.

BACKGROUND: Health insurance literacy is crucial for navigating the US healthcare system. Low health insurance literacy may be especially concerning for adolescent and young adult (AYA) cancer survivors. To describe AYAs' health insurance literacy, we conducted semi-structured interviews with AYA survivors, on and off of treatment. METHODS: We interviewed 24 AYA cancer survivors (aged 18-39 years) between November 2019 and March 2020. Interviews were recorded, transcribed, and quality-checked. Using two cycles of structured coding, we explored AYAs' health insurance literacy and examined thematic differences by policy holder status and age. RESULTS: AYAs were 58.3% female, 79.2% non-Hispanic White, 91.7% heterosexual, and 62.5% receiving cancer treatment. Most participants had employer-sponsored health insurance (87.5%), and 41.7% were their own policy holder. Four themes emerged; in the first theme, most AYAs described beginning their cancer treatment with little to no understanding of their health insurance. This led to the three subsequent themes in which AYAs reported: unclear expectations of what their insurance would cover and their out-of-pocket costs; learning about insurance and costs by trial and error; and how their health insurance literacy negatively impacted their ability to navigate the healthcare system. CONCLUSIONS: Our findings, while requiring confirmation in larger samples and in other health systems, suggest that the health insurance literacy needed to navigate insurance and cancer care is low among US AYA survivors and may have health and financial implications. As the burden of navigating insurance is often put on patients, health insurance education is an important supportive service for AYA survivors on and off of treatment.

HPV Vaccine Experiences and Preferences Among Young Adult Cancer Survivors and Caregivers of Childhood Cancer Survivors.

Cancer survivors are at higher risk of developing HPV-associated cancers later in life, yet their HPV vaccination rates remain lower than the general population. Improving HPV vaccination uptake among survivors is essential to preventing second malignancies. We interviewed HPV vaccine eligible adolescent and young adult (AYA) cancer survivors (18-26 years) and caregivers of HPV vaccine eligible childhood cancer survivors approaching the AYA age range (9-17 years) about their HPV vaccine experiences and preferences as informed by the HPV Vaccination Roundtable Best Practices. Interviews (N = 20) were recorded, transcribed, and analyzed using interpretive description. Of AYA survivors (n = 10), 50% had received at least one HPV vaccine dose. Of caregivers (n = 10), 30% reported their child had received at least one HPV vaccine dose. Three distinct categories emerged including (1) HPV vaccine knowledge, (2) HPV vaccination recommendation preferences, and (3) HPV vaccination reminder preferences. The first two categories were oncology focused. Participants lacked knowledge regarding HPV vaccine safety and applicability due to their complex cancer history. Most participants strongly preferred that their oncologist provide an HPV vaccine recommendation. The third category was mixed, with some participants preferring oncology-based HPV vaccine reminders while others preferred primary care-based reminders. Almost all participants preferred digital reminders (e.g., text messages). Our results suggest that oncologists play an essential role in recommending the HPV vaccine and providing information to assist survivors and caregivers with vaccine decision-making. Additionally, HPV vaccination uptake among pediatric and childhood and AYA survivors could be improved through the use of tailored, electronically delivered vaccine reminders.

COVID-19 Vaccine Hesitancy Among Adolescent and Young Adult Cancer Survivors.

The study objective was to identify sociodemographic and coronavirus disease 2019 (COVID-19) factors that are associated with COVID-19 vaccine hesitancy among adolescent and young adult (AYA) cancer survivors. Eligible participants were 18 years or older and were diagnosed with cancer as an AYA (ages 15-39 years) and received services through an AYA cancer program. A total of 342 participants completed a cross-sectional survey. Our primary outcome-COVID-19 vaccine hesitancy-was surveyed as a 5-point Likert scale and operationalized as a binary outcome (agree vs hesitant). A large proportion of participants reported COVID-19 vaccine hesitancy (37.1%). In the multivariable regression, female survivors (odds ratio = 1.81, 95% confidence interval = 1.10 to 2.98) and survivors with a high school education or less (odds ratio = 3.15, 95% confidence interval = 1.41 to 7.04) reported higher odds of vaccine hesitancy compared with their male or college graduate or higher counterparts. COVID-19 vaccine hesitancy persists among AYA survivors despite their recommended priority vaccination status and higher chances of severe COVID-19 outcomes.

Healthcare provider perspectives on pediatric cancer survivorship care plans: a single institution pilot study.

PURPOSE: Survivorship care plans (SCPs) are used to facilitate communication between oncology and primary care providers (PCPs) after cancer treatment and to assist cancer survivors with healthcare decisions. We evaluated pediatric oncology providers' experiences creating and delivering SCPs. We also evaluated PCPs' opinions of SCPs. METHODS: Together, oncology nurses and oncologists created individualized SCPs for leukemia patients treated at a children's hospital in Utah, with nurses in charge of inputting the majority of SCP content. We surveyed providers after each SCP was completed. We also mailed SCPs to PCPs with a survey on SCP content and their knowledge and comfort level caring for cancer survivors. Descriptive statistics were used to summarize survey content. RESULTS: A total of 6 nurses and 8 oncologists created 21 SCPs. On average, nurses assisted with 3.5 SCPs and spent 209 min (range 100-600 min) on completing their sections of each SCP, whereas oncologists assisted with 2.6 SCPs and spent 47.4 min (range 15-120). For most SCPs, there was agreement that they should be shared with PCPs (nurse surveys 71.4%, oncologist surveys 100%). Of the 15 participating PCPs, only 28% felt prepared to manage long-term effects in pediatric cancer survivors. They agreed that the SCP would improve communication with their patient's oncologist (80%) and their knowledge for future care (100%). CONCLUSIONS: SCPs require substantial clinician time to create, but are seen as useful by PCPs. PCPs require specific guidelines and resources concerning ongoing care for pediatric cancer survivors.

Influence of provider recommendations to restart vaccines after childhood cancer on caregiver intention to vaccinate.

PURPOSE: We studied the influence of oncology and primary care provider (PCP) recommendations on caregiver intentions to restart vaccines (e.g., catch-up or boosters) after cancer treatment. METHODS: We surveyed primary caregivers ages 18 or older with a child who had completed cancer treatment 3-36 months prior (N = 145) about demographics, child's vaccination status, and healthcare factors (e.g., provider recommendations, barriers, preferences for vaccination). We compared these factors by caregiver's intention to restart vaccines ("vaccine intention" vs. "no intent to vaccinate") using bivariate and multivariable analyses. RESULTS: Caregivers were primarily ages 30-39 years (54.9%), mothers (80.6%), college graduates (44.4%), non-Hispanic (89.2%), and married (88.2%). Overall, 34.5% of caregivers did not know which vaccines their child needed. However, 65.5% of caregivers reported vaccine intention. Fewer caregivers with no intention to vaccinate believed that vaccinating their child helps protect others (85.4 vs. 99.0%, p < 0.01), that vaccines are needed when diseases are rare (83.7 vs. 100.0%, p < 0.01), and that vaccines are safe (80.4 vs. 92.6%, p = 0.03) and effective (91.5 vs. 98.9%, p = 0.04) compared with vaccine intention caregivers, respectively. Provider recommendations increased caregivers' likelihood of vaccine intention (oncologist RR = 1.65, 95% CI 1.27-2.12, p < 0.01; PCP RR = 1.51, 95% CI 1.19-1.94, p < 0.01). CONCLUSIONS: Provider recommendations positively influence caregivers' intention to restart vaccines after childhood cancer. Guidelines are needed to support providers in making tailored vaccine recommendations. IMPLICATIONS FOR CANCER SURVIVORS: Timely vaccination after childhood cancer protects patients against vaccine-preventable diseases during survivorship. Caregivers may benefit from discussing restarting vaccinations after cancer with healthcare providers.

Age-Related Differences in Financial Toxicity and Unmet Resource Needs Among Adolescent and Young Adult Cancer Patients.

Financial toxicity may differ by age at diagnosis between adolescents and young adults (AYAs) with cancer. We surveyed 52 AYA cancer patients about unmet needs and financial toxicity using the COmprehensive Score for financial Toxicity (COST). We compared outcomes by age at diagnosis (15-25-year olds [n = 25, 48%] vs. 26-39-year olds [n = 27, 52%]). AYAs diagnosed ages 26-39 reported that cancer negatively affected their finances more than 15-25-year olds (77.8% vs. 37.5%, p = 0.0005). Lower mean COST scores among those diagnosed ages 26-39 indicated greater financial toxicity compared to those 15-25 years (18.22 vs. 24.84, p = 0.02). Financial burden appears to be greater for older AYAs with cancer.

HPV vaccination knowledge, intentions, and practices among caregivers of childhood cancer survivors.

The HPV vaccine is an important vaccine for childhood cancer survivors because of their risks of second cancers, yet few survivors receive it. We examined HPV vaccine knowledge among caregivers of childhood cancer survivors, whether their child had received the vaccine, and their intentions to vaccinate. Eligible participants were caregivers (mostly parents) whose child finished cancer treatment at Primary Children's Hospital in Salt Lake City, Utah 3 to 36 months prior to the start of the study (N = 145). Additional analyses were done among caregivers whose child was age-eligible for the HPV vaccine (ages 11 and up; N = 61). We ran descriptive statistics and fit multivariable generalized linear models to identify factors associated with intention to vaccinate and HPV vaccination uptake. Among caregivers whose child had not yet gotten the HPV vaccine, approximately 30% stated they were not likely to get the vaccine for their child and the most commonly cited reason was not enough information (25.2%). Provider discussion about vaccines and side effects (relative risk (RR) = 1.85, 95% CI 1.16-2.94), along with recommendations regarding vaccines after cancer treatment (RR = 1.35, 95% CI 1.06-1.72), led to greater caregiver intention to get the HPV vaccine for their child with cancer. Approximately 40% of age-eligible survivors had gotten at least one dose of the HPV vaccine. Our findings demonstrate a need for oncology-focused interventions to educate families of childhood cancer survivors about the importance of the HPV vaccine after cancer therapy.

Survivorship care plan experiences among childhood acute lymphoblastic leukemia patients and their families.

BACKGROUND: As survivorship care plan (SCP) use among childhood cancer survivors and their families has not been extensively researched, we report on their experiences with receiving an SCP after the completion of therapy. METHODS: Eligible patients had acute lymphoblastic leukemia, completed therapy, and had no evidence of disease at enrollment. Patients aged 7 or older (N = 13) and at least one parent (N = 23 for 20 total patients) were surveyed and completed assessments at enrollment (Time 1, T1), SCP delivery (Time 2, T2), and follow-up (Time 3, T3) (retention 90.9%). Surveys assessed the delivery process and SCP format. McNemar tests were used to assess change from T2-T3. RESULTS: Satisfaction with the SCP was generally high among parents. At T1 the majority of parents (69.6%) thought the SCP should be delivered after treatment but by T3 most preferred the plan to be delivered before the end of treatment (60.9%). While 95.7% of parents intended to share their child's SCP with another provider, family, or school at T2, only 60.9% had done so by T3 (P < 0.01). At both T2 and T3, 100% of parents agreed that the SCP would help make decisions about their child's future health care. Most patients at T3 (83.3%) felt they had learned something new from their SCP. CONCLUSIONS: Pediatric oncology patients and families feel SCPs are useful and will help them make decisions about health care in the future.

Follow-Up Care Provider Preferences of Adolescent and Young Adult Cancer Survivors.

PURPOSE: To explore the experiences and perspectives of adolescent and young adult (AYA) cancer survivors regarding patient-provider relationships and their preferences surrounding type of healthcare provider for follow-up care. METHODS: We recruited AYA cancer survivors who were diagnosed between the ages of 15 and 39 using the Utah Cancer Registry. Twenty-eight survivors participated in six focus groups held between March and May of 2015 in Salt Lake City and St. George, Utah. This analysis focuses on how survivors' preferences about type of healthcare provider may influence their transition into, and utilization of, follow-up care. RESULTS: On average, survivors were 6.3 (standard deviation = 1.7) years from their cancer diagnosis. A majority of survivors expressed a desire not to transition to a new provider and preferred continuing to see their oncologist for follow-up care. For these survivors, this was due to already having a close relationship with their oncologist and because they trusted their provider's knowledge about cancer and how to handle late effects. However, survivors placed emphasis on being comfortable with their healthcare provider, regardless of provider type. CONCLUSIONS: Our findings demonstrate the importance of formalizing provider transitions and roles after cancer therapy to improve patient comfort with new providers. By understanding the complexities of the transition from active cancer treatment to follow-up care for AYA survivors, these findings can inform programs undertaking post-care educational activities to ensure a seamless transition into survivorship care. Survivorship care plans can facilitate these transitions and improve patient confidence in follow-up care.