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.

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.

Age-Specific Patient Navigation Preferences Among Adolescents and Young Adults with Cancer.

BACKGROUND: Patient navigation is increasingly being directed at adolescent and young adult (AYA) patients. This study provides a novel description of differences in AYA cancer patients' preferences for navigation services by developmental age at diagnosis. METHODS: Eligible patients were diagnosed with cancer between ages 15 and 39 and had completed at least 1 month of treatment. Between October 2015 and January 2016, patients completed semi-structured interviews about navigation preferences. Summary statistics of demographic and cancer characteristics were generated. Differences in patient navigation preferences were examined through qualitative analyses by developmental age at diagnosis. RESULTS: AYAs were interviewed (adolescents 15-18 years N = 8; emerging adults 19-25 years N = 8; young adults 26-39 years N = 23). On average, participants were 4.5 years from diagnosis. All age groups were interested in face-to-face connection with a navigator and using multiple communication platforms (phone, text, email) to follow-up. Three of the most frequently cited needs were insurance, finances, and information. AYAs differed in support, healthcare, and resource preferences by developmental age; only adolescents preferred educational support. While all groups preferred financial and family support, the specific type of assistance (medical versus living expenses, partner/spouse, child, or parental assistance) varied by age group. CONCLUSIONS: AYAs with cancer have different preferences for patient navigation by developmental age at diagnosis. AYAs are not a one-size-fits-all population, and navigation programs can better assist AYAs when services are targeted to appropriate developmental ages. Future research should examine fertility and navigation preferences by time since diagnosis. While some navigation needs to span the AYA age range, other needs are specific to developmental age.

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.

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.

Clinicopathologic and Racial/Ethnic Differences of Colorectal Cancer Among Adolescents and Young Adults.

OBJECTIVES: Despite overall reductions in colorectal cancer burden, incidence rates continue to rise among younger patients, and causes remain unknown. We examined differences in clinicopathologic and racial/ethnic characteristics within the adolescent and young adult (AYA) population diagnosed with colorectal cancer in the United States. METHODS: Using the National Cancer Institute's Surveillance, Epidemiology, and End Results program data, we identified individuals diagnosed with first primary colorectal cancer between ages 15 and 39 years from 2010 to 2015. Adjusted multivariable logistic regression models were used to quantify clinicopathologic and racial/ethnic differences across age at onset subgroups (15-19, 20-24, 25-29, 30-34, and 35-39 years). RESULTS: We identified 5,350 AYA patients diagnosed with colorectal cancer. Of note, 28.6% of AYA cases were diagnosed with right-sided tumors (cecum to transverse colon). The proportion of right-sided colorectal cancers differed significantly by age group at diagnosis (38.3% vs 27.3% of AYAs aged 15-19 vs 35-39 years, respectively; P trend = 0.01). Proportions of cases with mucinous adenocarcinoma and signet ring cell carcinoma histopathologic subtypes significantly increased with younger age at onset (P trends = 0.01 and 0.03, respectively). Differences in clinical stage were observed across AYA age groups, with stage II disease increasing with younger age (P trend = 0.01). The proportion of Hispanic AYAs was higher within younger patients, accounting for 21.0% of the AYA population aged 35-39 years up to 28.3% of 15-19-year-old individuals (P trend = 0.003). DISCUSSION: Within the AYA population, colorectal cancers differ by clinicopathologic and racial/ethnic characteristics. Further investigation of the clinical and biologic diversity of colorectal cancers that partially underlie age- and race-related differences in cancer susceptibility and outcomes is warranted.

Patient Navigation Preferences for Adolescent and Young Adult Cancer Services by Distance to Treatment Location.

PURPOSE: To describe how distance to treatment location influences patient navigation preferences for adolescent and young adult (AYA) cancer patients and survivors. METHODS: This study is part of a statewide needs assessment to inform the development of an AYA cancer patient and survivor navigation program. Participants were recruited from outpatient oncology clinics in Utah. Eligible participants had been diagnosed with cancer between ages 15-39 and had completed at least 1 month of treatment. Participants completed a semi-structured interview on preferences for patient navigation. Summary statistics of demographic and cancer characteristics were generated. Thematic content analysis was used to describe navigation preferences among participants classified as distance (≥20 miles) and local (<20 miles), to explain differences in their needs based on distance from their treatment center. RESULTS: The top three patient navigation needs were general information, financial, and emotional support. More local patients were interested in patient navigation services (95.2%) compared to distance participants (77.8%). Fewer local (38.1%) than distance participants (61.1%) reported challenges getting to appointments, and distance patients needed specific financial support to support their travel (e.g., fuel, lodging). Both local and distance patients desired to connect with a navigator in person before using another form of communication and wanted to connect with a patient navigator at the time of initial diagnosis. CONCLUSION: Distance from treatment center is an important patient navigation consideration for AYA cancer patients and survivors. After initially connecting with AYAs in person, patient navigators can provide resources remotely to help reduce travel burden.

Supporting Adolescents and Young Adults with Cancer: Oncology Provider Perceptions of Adolescent and Young Adult Unmet Needs.

Few studies have assessed oncology providers' perceptions of adolescent and young adult (AYA) cancer patients' unmet needs. In this statewide survey (N = 91), we found that most providers recognize the financial, insurance, and late effects needs of their AYA cancer patients. However, employment, education, behavioral health, sexuality, and social and family issues were endorsed by less than half of providers as areas where AYAs needed assistance. Few providers felt that their AYA cancer patients had unmet needs for these same concerns. Educational efforts are needed to improve providers' awareness of the impact of cancer for AYA cancer patients.