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Background Primarily Spanish-speaking cancer patients and caregivers often experience non-congruence with healthcare providers about beliefs, values, and knowledge of cancer. Our goal was to describe how communication related to the diagnosis of cancer was influenced by culture and language among primarily Spanish-speaking caregivers of pediatric cancer patients. Methods Caregivers participated in three focus groups about their experiences with their child's diagnosis, communication issues, and understanding of their child's diagnosis and treatment plan. Focus groups were audio recorded, transcribed, and qualitatively analyzed using interpretive description. Results Three themes emerged: 1) Negative experiences and barriers during the cancer diagnosis and treatment, 2) Miscommunication and system complexity, and 3) Language barriers throughout the diagnostic process. Due to barriers and negative experiences, some caregivers reported that their child's diagnosis was delayed, that providers sometimes used dehumanizing language, and that they were confused about diagnostic testing and treatment. Conclusion Cultural and linguistic disparities in pediatric oncology must be systematically addressed at the provider, clinic, and system level. Practice implications High-quality cancer care delivered by oncologists and cancer care teams should include cultural humility when discussing the cancer diagnosis and prognosis.

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.

Purpose The cancer experience may cultivate positive psychological changes that can help reduce distress during adult survivors of childhood and adolescent cancer life course. The aim of this study is to examine the positive impact of cancer in adult survivors utilizing posttraumatic growth as a guiding framework. Method Participants were identified and recruited through the Utah Cancer Registry. Eligible cases were diagnosed with cancer age ≤20 years from 1973 to 2009, born in Utah, and were age ≥18 at study. Semi-structured phone interviews (N = 53) were analyzed using deductive analysis. Results The primary five themes that emerged were similar to Tedeschi and Calhoun's (1996) themes for measuring positive effects, and were used to frame our results. The primary themes along with uniquely identified sub-themes are the following: personal strength (psychological confidence, emotional maturity), improved relationship with others (family intimacy, empathy for others), new possibilities (having passion work with cancer), appreciation for life (reprioritization), and spiritual development (strengthened spiritual beliefs, participating in religious rituals and activities). Conclusions For survivors, cancer was life altering and for many the experience continues. Understanding survivors' complex cancer experience can help improve psychosocial oncology care.

Purpose: Examine whether survivors of adolescent and young adult (AYA) cancer value recommended post-treatment care using focus groups and a willingness to pay (WTP) survey. WTP, a measure of value, indicates the dollar amount individuals are willing to pay to use a service. Methods: Participants were recruited through the Utah Cancer Registry. N = 28 survivors diagnosed with cancer at ages 15–39 and currently aged ≥18 participated in focus groups, and N = 4 in phone interviews (participation rate = 50%). All participants responded to a demographic survey and WTP questions based on one-time and monthly payments for annual visits. Focus group participants responded to an open-ended question on the value of follow-up care. Interval regressions identified factors associated with WTP. Qualitative analysis summarized themes for the open-ended question. Results: Focus group participants reported valuing follow-up care as it brings peace of mind and helps them manage their health. Yet, 38% reported not having a cancer-related visit in the previous year. Only 27% and 43% of survivors agreed to pay any one-time and monthly payments, respectively. The monthly payment mean WTP was $41 (95% confidence interval [CI]: 31–84), equating to $494 annually, which is greater than the mean WTP for one-time payment ($362, 95% CI: 293–432, p

Though the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) cancer has been documented, survivors often report forgoing recommended care due to cost. We sought to understand whether additional barriers to follow-up care exist for AYA survivors.We recruited survivors who were diagnosed with cancer between the ages of 15 and 39 using the Utah Cancer Registry (UCR). Overall, 28 survivors participated in 6 focus groups held between March and May 2015 in Salt Lake City and St. George, UT. Focus group discussions focused on the reasons survivors may or may not attend recommended medical visits after completing therapy.Survivors reported myriad barriers to follow-up medical visits, including lack of clear provider recommendation, fear of recurrent cancer diagnosis, wishing to move on with life, competing life responsibilities due to work and children, and not perceiving the need for a visit due to lack of symptoms.Though cost likely plays a major part in follow-up care adherence for survivors of AYA cancer, in our focus groups, participants indicated there were many other psychosocial and logistic barriers to care. Such factors play an important role in the day-to-day lives of survivors and are critical in medical decision-making.Several factors impede follow-up care adherence for survivors of AYA cancer that are amenable to interventions, including clearer provider recommendations, flexible appointment times, and childcare availability in clinics.

Background An increasing proportion of pediatric cancer patients in the United States are Latino and many have Spanish-speaking immigrant parents with limited English proficiency (LEP). Little is known about how language or undocumented immigration status impacts their care experience. Procedure A cross-sectional survey was administered to English (N = 310) and Spanish-speaking LEP (N = 56) caregivers of pediatric cancer patients. To assess differences in healthcare experiences between the language groups, t-tests and chi-square statistics were used. Multivariable logistic regression evaluated associations between primary language and knowledge of clinical trial status. Results Spanish-speaking caregivers were more likely to report higher rates of quitting or changing jobs as a direct result of their child's cancer, and their children were more likely to experience a delay in education. Although Spanish-speaking caregivers reported higher satisfaction with care, 32% reported feeling that their child would have received better care if English was their primary language. Spanish-speaking caregivers were more likely to incorrectly identify whether their child was on a clinical trial compared with English-speaking caregivers. The majority of Spanish-speaking caregivers reported at least one undocumented caregiver in the household and 11% of them avoided or delayed medical care for their child due to concerns over their undocumented immigration status. Conclusions Language barriers and undocumented immigration status may negatively impact the quality of informed decision-making and the care experience for Spanish-speaking LEP caregivers of pediatric cancer patients. These families may benefit from culturally appropriate Spanish language resources to improve communication and open a dialogue regarding undocumented immigration status.

8 Background: Survivors of adolescent and young adult (AYA) cancer, diagnosed between the ages of 15-39, require life-long medical care. Cost is a known barrier. However, survivors’ valuation of follow-up care has not been investigated. We used willingness to pay (WTP), an economic tool for evaluating monetary values associated with medical services, to examine how survivors value follow-up care. Methods: AYA cancer survivors ≥18 years of age who had completed their primary therapy were identified by the Utah Cancer Registry. Of 137 randomly-selected survivors, 64 agreed to be contacted; 32 participated. We conducted 6 focus groups and 4 interviews from April-August 2015. Participants filled out a mini-survey, discussed cancer-related follow-up care, and responded to WTP questions. Focus group transcripts were coded in NVivo by 2 researchers (percent agreement = 97.8%). An interval regression identified factors associated with higher WTP. Results: 56% of participants were females and average age was 31 years. Over 45% reported ≥1 day of poor physical health in the previous month, with 15% reporting ≥10 days. Yet, 28% and 10% had no routine follow-up visit with a doctor in the previous 1-2 and 2-5 years, respectively. Focus group coding suggested that survivors valued follow-up care for early detection and management of health conditions, although this decreased over time because of other responsibilities (e.g., college/work/family), they felt the medical visits were costly/ineffective, and because they lacked easy access to specialists. WTP analysis showed that married survivors were willing to pay $456 more for an annual follow-up visit than never-married/single/separated (p = .05). Those with recent checkups were willing to pay more than others (p = .07). Insurance did not affect WTP. Conclusions: Targeted survivorship care strategies are needed to address the needs of AYA cancer survivors who are at risk for skipping follow-up care. Survivors with no recent medical visits or who are not married need additional support.