Purpose: Surveillance for long-term complications related to previous cancer therapy can help diagnose/ manage chronic health conditions in childhood cancer survivors and improve survivor quality of life. However, a challenge to delivering long-term care to childhood cancer survivors is loss to follow-up; many patients discontinue care at specialized survivor care centers. The purpose of this study was to examine patterns of loss to follow-up among a cohort of childhood cancer survivors. Methods: This retrospective study examined follow-up patterns among a nonrandom representative sample of 370 childhood cancer survivors among 1116 patients from a single institution. The median age of patients at diagnosis was 10.2 years (range <1-21). Factors potentially related to follow-up were utilized to evaluate patterns of follow-up across 5-year intervals following completion of active therapy. The association between patient characteristics and follow-up was evaluated using univariate and multivariate binomial regression models. Results: The probability of follow-up 1-5 years post-treatment was 91.2% (89.7%-92.5%) but dropped to 68.5% (66.2%-70.8%) during years 6-10, 47.7% (45.0%-50.3%) during years 11-15, and continued to steadily decrease over time. Overall, white race, diagnoses at younger ages, patients with lymphomas/leukemias, and decade of diagnosis were each associated with somewhat better rates of follow-up. Conclusions: These findings highlight the lack of follow-up by adult survivors of childhood cancer with only approximately one-half of patients returning for follow-up 10 years after completion of therapy. Interventions focused on educating both patients and primary care physicians may help to increase long-term follow-up care among this at-risk population.
Background: This article describes the development of an integrative survivorship program at an urban National Cancer Institute-designated comprehensive cancer center with three closely linked components: a Survivorship Clinic with dedicated staff, a network of Support Services including Wellness, and an Integrative Medicine Program. Development: We first defined the parameters of survivorship care and developed a patient-centric model that determined the optimal timeframes for transitioning these patients from the oncology clinic to a centralized survivorship clinic. Survivorship care includes the development of a survivorship care plan (SCP) for each patient at their initial visit to the program. Quality-of-life assessments are used in real time to guide clinical decision making to referrals to supportive care services, including educational events, expert consultations, and treatment using integrative and complementary therapies, access to legal services, community resource information, and support group activities for cancer survivors and caregivers. Integrative therapies were added to support the needs of this new program, including recruiting a nutritionist and acupuncturist, and developing a yoga, mindfulness, and Reiki program. Population served: As of June 2018, 908 people have accessed our survivorship clinic, receiving a complete clinical assessment and SCP. Patients are routinely referred to support services based on the individual needs and ongoing symptoms from treatment. The majority of referrals are made to acupuncture, Healing Touch or Reiki, nutrition, psychosocial oncology, and yoga. Conclusions: Developing a successful integrative survivorship program requires some essential features, including institutional support, strong leadership, a clear vision of how the clinical program will function, a dedicated team that is willing to do what it takes to get the program off the ground, and clinical oncology champions to refer patients into the program. With the development of this program, this multimodal approach to patient-centric care is maintained throughout the spectrum of care, from diagnosis to survivorship.
Background This study examined current physical activity levels and preferences for exercise settings and activities among adult survivors of childhood cancers as a strategy to inform the feasibility and design of such programs. Methods A mixed-methods design was used to investigate current activity levels as well as barriers to and preferences for physical activity among 20 adult survivors of pediatric cancer. Results One-half of participants reported engaging in regular physical activity, although the frequency, intensity, and duration varied. Overall, 17 of the 20 participants (85%) stated they would be interested in participating in a structured exercise intervention, and they expressed a strong interest in walking (76%), bicycling (53%), and weight training (53%). Common barriers to participation in a potential structured exercise program were insufficient time, current health issues, and program location/distance. Nearly all participants agreed that information on nutrition and diet should be included as part of an exercise intervention. Conclusions These findings will help inform the design and implementation of future exercise programs to enhance physical activity among this high-risk group of cancer survivors.
While pediatric, adolescent, and young adult (PAYA) cancer survivors are at increased risks for secondary cancers, their HPV vaccine uptake rates are poor. Therefore, we conducted a mixed-methods study to identify the barriers and opportunities for HPV vaccine delivery among PAYA cancer care providers. We distributed a semi-structured questionnaire to a professional organization comprised of PAYA oncology and hematology healthcare providers between April-July 2022. Questionnaire measures included demographic and practice characteristics, HPV vaccine knowledge, willingness, barriers, opportunities, and roles for HPV vaccine delivery. Descriptive characteristics were generated for quantitative data, and content analysis was used to identify themes. A total of 49 providers responded to our survey. A majority were female (68%) and non-Hispanic white (74%). Approximately 76% were oncology or hematology physicians, and most worked in a cancer center or children’s hospital (86%). Over half (63%) had been practicing for >15 years, and a majority saw patients ages 11-17. Although less than half reported discussing HPV vaccination with their patients, 69% were willing to become involved in HPV vaccine delivery. The most frequently reported barriers identified in our content analysis were related to system-level factors. Furthermore, providers identified opportunities within cancer prevention education, transitions in care, and at the system-level. Although barriers to HPV vaccination persist in cancer care, most providers perceived there to be opportunities to become involved in HPV vaccine delivery. Identifying strategies for PAYA oncology and hematology healthcare providers to adopt a stronger role in HPV vaccination remains a significant opportunity for future implementation research.
The NCCN Guidelines for Wilms Tumor focus on the screening, diagnosis, staging, treatment, and management of Wilms tumor (WT, also known as nephroblastoma). WT is the most common primary renal tumor in children. Five-year survival is more than 90% for children with all stages of favorable histology WT who receive appropriate treatment. All patients with WT should be managed by a multidisciplinary team with experience in managing renal tumors; consulting a pediatric oncologist is strongly encouraged. Treatment of WT includes surgery, neoadjuvant or adjuvant chemotherapy, and radiation therapy (RT) if needed. Careful use of available therapies is necessary to maximize cure and minimize long-term toxicities. This article discusses the NCCN Guidelines recommendations for favorable histology WT.
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