The Feasibility and Acceptability of a Data Capture Methodology in Pediatric Cancer Patients Treated with Targeted Agents and Immunotherapies.

As childhood cancer treatments have improved to include new and innovative agents, the need for more advanced monitoring of their long-term effects and related research has increased. This has resulted in a need for evidence-based research methodologies for the longitudinal care of childhood cancer patients treated with targeted agents and immunotherapies. The rationale for this pilot study was to determine the feasibility and acceptability of a data capture methodology for pediatric, adolescent, and young adult cancer patients treated with targeted agents and immunotherapy as there is little research to inform this delivery of care. Data were collected from thirty-two patients and two providers for descriptive statistics and thematic analyses. Feasibility was characterized by expected participant attrition. Key drivers of acceptability were (1) providers' language and clarity of communication and (2) convenient participation requirements. Long-term follow-up research practices developed with input from key stakeholders, including patients, caregivers, and providers, can lead to acceptable and feasible research protocols that optimize successful participant recruitment. These evidence-based research practices can result in high participant satisfaction and can be implemented as program development initiatives across centers caring for childhood cancer survivors.

Perspectives on Virtual Care for Childhood Cancer Survivors in Non-Metropolitan Areas during the COVID-19 Pandemic.

The COVID-19 pandemic paved the way for the widespread use of virtual care for childhood cancer survivors (CCSs). CCSs were virtual recipients of diverse care, including long-term follow-up (LTFU), primary care, mental health care, and several others. Virtual care comes with well-documented benefits and challenges. These are further magnified for CCSs living in rural or non-metropolitan areas. Here, we describe the virtual care of CCSs from two Upper Midwest cities with well-established childhood cancer survivor programs within large comprehensive cancer centers in the United States. CCSs from non-metropolitan areas, especially CCSs with two or more late effects, used virtual care more often during the COVID-19 pandemic compared to CCSs from metropolitan areas. A review of the related literature is also included and the identified challenges in providing virtual care, such as privacy concerns, technology-connectivity constraints, and medical license restrictions. Despite these limitations, the care of CCSs has evolved to leverage virtual care and its ability to increase access for patients and promote continuity of care for CCSs living in rural areas.

Usability and Satisfaction Testing of Game-Based Learning Avatar-Navigated Mobile (GLAm), an App for Cervical Cancer Screening: Mixed Methods Study.

BACKGROUND: Barriers to cervical cancer screening in young adults include a lack of knowledge and negative perceptions of testing. Evidence shows that mobile technology reduces these barriers; thus, we developed a web app, Game-based Learning Avatar-navigated mobile (GLAm), to educate and motivate cervical cancer screening using the Fogg Behavioral Model as a theoretic guide. Users create avatars to navigate the app, answer short quizzes with education about cervical cancer and screening, watch videos of the screening process, and earn digital trophies. OBJECTIVE: We tested ease of use, usefulness, and satisfaction with the GLAm app among young adults. METHODS: This mixed methods study comprised a qualitative think-aloud play interview session and a quantitative survey study. Participants were cervical cancer screening-eligible US residents aged 21 to 29 years recruited through social media. Qualitative study participants explored the app in a think-aloud play session conducted through videoconference. Data were analyzed using directed content analysis to identify themes of ease of use, usefulness, and content satisfaction. Qualitative study participants and additional participants then used the app independently for 1 week and completed a web-based survey (the quantitative study). Ease of use, usefulness, and satisfaction were assessed using the validated Technology Acceptance Model and Computer System Usability Questionnaire adapted to use of an app. Mean (SD) scores (range 1-7) are presented. RESULTS: A total of 23 individuals participated in one or both study components. The mean age was 25.6 years. A majority were cisgender women (21/23, 91%) and White (18/23, 78%), and 83% (19/23) had at least some secondary education. Nine participants completed the think-aloud play session. Direct content analysis showed desire for content that is concise, eases anxiety around screenings, and uses game features (avatars and rewards). Twenty-three individuals completed the quantitative survey study. Mean scores showed the app was perceived to be easy to use (mean score 6.17, SD 0.27) and moderately useful to increase cervical cancer screening knowledge and uptake (mean score 4.94, SD 0.27). Participants were highly satisfied with the app (mean score 6.21, SD 1.20). CONCLUSIONS: Survey results showed participants were satisfied with the app format and found it easy to use. The app was perceived to be moderately useful to inform and motivate cervical cancer screening; notably, the screening reminder function was not tested in this study. Qualitative study results demonstrated the app's ability to ease anxiety about screening through demonstration of the screening process, and brevity of app components was favored. Interpretation of results is limited by the predominantly cisgender, White, and educated study population; additional testing in populations which historically have lower cervical cancer screening uptake is needed. A modified version of the app is undergoing efficacy testing in a randomized clinical trial.

Late-onset toxicities of monoclonal antibodies in cancer patients.

Cancer therapy duration is variable and may take years, adding a new challenge of maintaining the best life quality for cancer survivors. In cancer patients, late-onset toxicities have been reported with monoclonal antibodies and may involve several body organs or systems. They are defined as an autoimmune illnesses that can happen months to years after treatment discontinuation. Late-onset toxicities have become a focus of clinical care and related research. After cancer therapy is completed, the patient should receive longitudinal follow-up to detect these late effects as early as possible. The current review summarizes the recently reported late-onset toxicities of four classes of monoclonal antibodies (anti-CD52, anti-CTLA-4, anti-PD-1 and anti-CD20) with guidance for the diagnostic tools, appropriate management and treatment.

Late-onset toxicities have been reported in cancer patients with monoclonal antibodies therapy and may involve several body organs or systems. They are defined as autoimmune illnesses that can happen months to years after treatment discontinuation. The reported late-onset toxicities include; bruises due to decreased platelet count associated with alemtuzumab, ipilimumab-induced pneumonitis, hepatitis, gastrointestinal disorders, cardiovascular complications and neurosarcoidosis. Moreover, endocrinal side effects of nivolumab, pembrolizumab-induced colitis, dermatological toxicities and acute encephalopathy, and rituximab-induced late-onset decrease in neutrophils count. Several treatment options are available for managing late-onset toxicities, including corticosteroids. After monoclonal antibodies therapy is completed in cancer patients, they should receive a longitudinal follow-up to detect these late effects as early as possible.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents.

BACKGROUND: Survivor-focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric- to adult-centered care from the parent perspective. METHODS: We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long-term follow-up (LTFU) clinic at a single institution. We used a semi-structured interview protocol with the parents and conducted a thematic content analysis. RESULTS: Using a constant comparison approach, data revealed three primary themes regarding parents' perspectives toward ensuring a seamless transition from pediatric- to adult-centered follow-up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self-efficacy in order to achieve a successful transition, and (3) the survivor-focused care should include support for survivors' overall well-being, including financial and health insurance literacy. CONCLUSIONS: For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor-focused providers while also supporting self-efficacy and financial literacy as it relates to health insurance.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors.

BACKGROUND: Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care. METHODS: A qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis. RESULTS: Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being. CONCLUSIONS: From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS' report as important in transitioning care from pediatric- to adult-centered care.

A Narrative Literature Review and Environmental Scan of Self-management Education Programs for Adolescent and Young Adult Survivors of Childhood Cancer.

Self-management education programs (SMEPs) have demonstrated a measurable benefit in enhancing self-efficacy, increasing health knowledge, and improving both health behaviors and physical symptoms associated with underlying conditions in multiple chronic disease populations. Adolescent and young adult (AYA) survivors of childhood cancer, defined as individuals ages 15 to 39 years, are at a high risk for adverse health outcomes due to late complications from previous cancer treatments, knowledge deficits of their risks, and complex socioeconomic challenges associated with transitional periods in their lives. We performed a literature review and environmental scan to systematically survey and interpret relevant SMEPs to identify opportunities for their development specific to the AYA population. Despite evidence existing for the importance of self-management and general educational messages for survivors of childhood cancer, very few evidence-based interventions have been developed for the AYA population. Most SMEPs for cancer survivors are geared towards individuals with cancer in adulthood. Among the limited interventions directed at survivors of childhood cancer, they are focused on individual health behaviors, such as physical exercise, mental health, nutrition, or self-efficacy. Given the ever-growing technological footprint in our daily lives, mobile health (mHealth) applications may be the most efficacious means of delivering self-management education to this specific population. As content is developed through mHealth applications as well as other platforms, they will need to be rigorously evaluated, given their potential to compliment survivor-focused care.

Transitional care practices, services, and delivery in childhood cancer survivor programs: A survey study of U.S. survivorship providers.

PURPOSE: There are limited reports describing transition of young adult childhood cancer survivors (CCS) from pediatric to adult-focused survivorship care. The purpose of this study was to characterize current transitional care practices in the United States. PROJECT DESCRIPTION: An online survey was sent to one preselected respondent at 163 Children's Oncology Group member institutions in the United States. Data were collected about (i) the availability and type of long-term follow-up services for adult CCS and (ii) policies and procedures for transitioning. Logistic regression was used to evaluate factors related to care for CCS. RESULTS: The response rate was 60% (97/163). Eighty-one respondents (84%) represented centers with specialized pediatric-focused CCS programs. Thirty-nine percent (38/97) of programs delivered specialized transitional care for adult CCS. Adult-centered care was delivered in both pediatric (39%, 15/38) and adult oncology clinics (39%, 15/38). The most common perceived transition barriers were lack of available partnering adult providers and adult providers' lack of knowledge regarding CCS. The larger the program in terms of new diagnoses, the more likely they were to offer formal transitional care (<50 vs >200: odds ratios [OR] 20.0; 95% CI 3.2, 100.0, P = 0.004). CONCLUSIONS: A variety of models are utilized for delivering care to adult CCS. Our results suggest that interventions to establish effective partnerships with adult providers on appropriate care of CCS may facilitate expanded availability of these services.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative study of survivorship providers.

BACKGROUND: Long-term survival in childhood cancer is excellent. Most survivors will have a therapy-related chronic condition, yet very few receive survivor-focused care as they transition from adolescence to young adulthood. The purpose of this study is to identify indicators of success in current transitional care practices for young adult survivors of childhood cancer as defined by all members of survivorship care teams. PROCEDURE: An exploratory, phenomenologic qualitative study was conducted with key informants from medical teams involved in transitional care of childhood cancer survivors. Data were collected through phone interviews with providers from both pediatric and adult care settings. RESULTS: A multidisciplinary study sample of 29 participants from three institutions identified two major themes with multiple subthemes. The first major theme was that providers must be good communicators, and it emphasized the importance of having good relationships throughout the transition of care to optimize effective communication. The second major theme was that models of care must include well-established partners throughout the healthcare system that promote accessible subspecialty care with streamlined referrals and patient navigation services. CONCLUSIONS: From the perspective of experienced pediatric- and adult-centered providers at three different institutions delivering life-long transitional care for childhood cancer survivors, the optimal model of care must be built around facilitating communication among all key stakeholders and emphasizing patient-friendly services that minimize patient stressors.

Parent-perceived Facilitators in the Transition of Care for Young Adult Survivors of Childhood Cancer.

Most childhood cancer survivors need life-long care with specialized late-effects surveillance and screening. As these children age into adulthood, it is imperative to continue their survivor-focused care. To do so, health care systems must be prepared to care for this growing and aging population. This includes creating models of care that take into account the needs and desires of all key stakeholders: survivors, parents, pediatric providers, and adult providers. This clinical observation describes that parents desire comprehensive and highly accessible survivorship care that promotes survivor independence; yet, they also want to have a central role in their child's survivorship care.

The Clinical and Research Infrastructure of a Childhood Cancer Survivor Program.

Increased knowledge and awareness of the long-term complications from childhood cancer has illuminated a clear need for healthcare delivery systems that address the specific needs of survivors. We report a descriptive framework of such a healthcare infrastructure within a single institution to provide education for other healthcare professionals developing a cancer survivorship program at their institution. This cross-sectional study described the structure and patient population of the Cancer Survivor Program (CSP) in the Department of Pediatrics at the University of Minnesota (UM). It relied on the UM Cancer Survivorship Database maintained by the Division of Pediatric Hematology/Oncology. Demographic and relevant survivorship information is summarized for survivors seen from August 1, 2003 to May 1, 2013. The study population included 504 survivors of childhood cancer with a mean age of 21.4 years (range 3-59 years). Most were non-Hispanic white (455/504, 90 %) and the mean interval between prior cancer diagnosis and entry into the CSP was 13.7 years (range 1-56 years). The breakdown of cancer diagnoses among survivors is reflective of the incidence of childhood malignancies in the general population with the exception of an under-representation of survivors with brain tumors. Nearly 25 % of survivors received their oncology treatment at an outside institution. With the appropriate healthcare infrastructure, a pediatric cancer survivorship program can meet the needs of a large survivor population, many of whom are adults and are seeking care from outside institutions.

International patterns of childhood chronic myeloid leukemia: comparisons between the United States and resource-restricted nations.

BACKGROUND: Chronic myeloid leukemia (CML) is a rare disease in children and represents approximately 2% of all childhood leukemia. This results in difficulty creating large cohorts of patients for pediatric CML research. The Glivec International Patient Assistance Program (GIPAP) is a patient-access program sponsored by Novartis Oncology and administered by The Max Foundation (MAX) that provides imatinib free of charge to patients in resource-restricted countries who are not able to afford this treatment. PROCEDURES: GIPAP highlights a cohort of children (n = 3,188) with CML that provides novel insight into international trends in diagnosis, treatment, and survival. These trends can be compared to outcomes in developed nations to crudely assess the impact of an extended access program for CML treatment such as GIPAP. RESULTS: Overall survival values for children treated for CML within the GIPAP (89%) suggest that imatinib is very effective in middle and low-income countries. CONCLUSIONS: This may allow for increased international awareness within the scientific community to consider possible reasons for the differences in overall survival in pediatric CML within the United States versus other nations with fewer resources.

Innovative educational approaches to engage and empower the adolescent and young adult childhood cancer survivor.

There is a long history of challenges when delivering care to adolescents and young adults (AYA) with chronic healthcare needs. For the AYA survivor of childhood cancer, these challenges may include complex medical care, a multitude of psychosocial issues and systemic barriers to care. Educating this population is critical as they assume age-appropriate responsibility for their health and become active partners in their survivorship care. We present our regional experience with educational programming directed to AYA survivors of childhood cancer featuring an innovative approach to engaging and empowering this population.

Patient-perceived facilitators in the transition of care for young adult survivors of childhood cancer.

BACKGROUND: A new challenge has emerged in optimizing the transition of pediatric survivorship care to similarly focused programs that are age-appropriate for young adults. The purpose of this study is to identify components of a clinical survivorship program that facilitate the transition of care for young adult survivors of childhood cancer from a pediatric to adult care-setting. PROCEDURE: Prior to transition, a descriptive study of childhood cancer survivors was conducted using a cross-sectional study design. A questionnaire was used to identify which clinical components of a survivorship program would most influence their decision to transition care to an adult medical center. RESULTS: Of 129 invited survivors, 103 participated (80%). Most survivors were age 16-19 years (40/103, 39%) or 20-24 years (37/103, 36%). When asked if the participant was willing to transition their survivorship care to an adult facility, 97 (95%) responded affirmatively. The clinical components most frequently rated "Very Important" in the decision to transition were the acceptance of insurance (80/103, 78%) followed by the presence of a provider knowledgeable in childhood cancer (68/103, 66%). The clinical components most frequently rated "Very Important" or "Important" were the availability of flexible scheduling (102/103, 99%) followed by the comprehensive nature of the care provided (101/103, 98%). CONCLUSIONS: The decision to transition survivorship care to age-appropriate care-settings is complex and not well understood. Issues related to insurance, clinical team composition and scheduling appear to be most important for young adult survivors making this decision. Pediatr Blood Cancer 2013;601365-1368. © 2013 Wiley Periodicals, Inc.