Number Of Childhood Cancer Survivors Research Articles

Ethical, legal, social, and policy issues of ovarian tissue cryopreservation in prepubertal girls: a critical interpretive review.

Despite the increasing number of childhood cancer survivors, significant advances in ovarian tissue cryopreservation (OTC) technique and medical societies' recommendations, fertility preservation (FP) and FP discussions are not always offered as a standard of care in the pediatric context. The aim of this literature review is to understand what ethical, legal, social, and policy issues may influence the provision of FP by OTC in prepubertal girls with cancer. A critical interpretive review of peer-reviewed papers published between 2000 and January 2023 was conducted, guided by the McDougall's version of the critical interpretive synthesis (Dixon-Woods), to capture recurring concepts, principles, and arguments regarding FP by OTC for prepubertal girls. Of 931 potentially relevant papers, 162 were included in our analysis. Data were grouped into seven thematic categories: (1) risks of the procedure, (2) unique decision-making issues in pediatric oncofertility, (3) counseling, (4) cultural and cost issues, and (5) disposition of cryopreserved reproductive tissue. This first literature review focusing on ethical, legal, social, and policy issues surrounding OTC in prepubertal girls highlights concerns in the oncofertility debate. Although OTC is no longer experimental as of December 2019, these issues could limit its availability and the child's future reproductive autonomy. This review concludes that specific actions must be provided to enable the offer of FP, such as supporting families' decision-making in this unique and complex context, and providing pediatric patients universal and full access to free or highly subsidized OTC.

Late Complications in Long-Term Childhood Cancer Survivors: What the Oral Health Professional Needs to Know.

With diagnostic and therapeutic advances, over 80% of children diagnosed with cancer become long-term survivors. As the number of childhood cancer survivors (CCS) continues to increase, dental practitioners become more likely to have CCS among their patients. CCS may develop late complications from damage caused by their cancer treatment to endocrine, cardiovascular, musculoskeletal, and other organ systems. These complications may surface decades after the completion of treatment. Adverse outcomes of childhood cancer treatment frequently involve oral and craniofacial structures including the dentition. Tooth development, salivary gland function, craniofacial growth, and temporomandibular joint function may be disturbed, increasing oral health risks in these individuals. Moreover, CCS are at risk of developing subsequent malignancies, which may manifest in or near the oral cavity. It is important that dental practitioners are aware of the childhood cancer history of their patients and have knowledge of potential late complications. Therefore, this narrative review aims to inform dental practitioners of late oral complications of cancer treatment modalities commonly used in pediatric oncology. Furthermore, selected common non-oral late sequelae of cancer therapy that could have an impact on oral health and on delivering dental care will be discussed.

A new method of estimating prevalence of childhood cancer survivors (POCCS): example of the 20-year prevalence in The Netherlands.

Estimating the number of childhood cancer survivors is crucial for cancer control, including clinical guidelines. To compare estimates across countries despite data sharing restrictions, we propose a new method of computing limited-duration prevalence of childhood cancer survivors (POCCS) using aggregated data. We developed a Markov model that simulates, for each calendar year and birth cohort in a population, the proportion of individuals in the following health states: healthy, newly diagnosed with cancer, surviving with cancer, and deceased. Transitions between health states were informed using annual sex- and age-specific incidence rates, conditional 1-year net survival probabilities from the Netherlands Cancer Registry (1989-2011), and annual mortality probability by sex and age group for The Netherlands from the Human Mortality Database. Applying a Markov model, we computed 20-year prevalence of childhood cancer survivors. The resulting POCCS estimates, stratified by sex, were compared with SEER*Stat estimates derived from individual cancer records from the same registry. In 2011, POCCS predicted 654 males [95% confidence interval (95% CI): 637-672] and 539 females (95% CI: 523-555) per million persons living in The Netherlands after childhood cancer diagnosed within the previous 20 years. Using SEER*Stat, the 20-year prevalence was 665 males (95% CI: 647-683) and 544 females (95% CI: 529-560) per million persons on 1 July 2011. Using the POCCS model and aggregated cancer data, our estimates of childhood cancer survivors limited-duration prevalence were consistent with those computed by a standard method requiring individual cancer records. The POCCS method provides relevant information for planning follow-up and care for childhood cancer survivors.

Pharmacotherapy for Cancer Treatment-Related Cardiac Dysfunction and Heart Failure in Childhood Cancer Survivors.

The number of childhood cancer survivors is increasing rapidly. According to American Association for Cancer Research, there aremore than 750,000 childhood cancer survivors in the United States and Europe. As the number of childhood cancer survivors increases, so does cancer treatment-related cardiac dysfunction (CTRCD), leading to heart failure (HF). It has been reported that childhood cancer survivors who received anthracyclines are 15 times more likely to have late cancer treatment-related HF and have a 5-fold higher risk of death from cardiovascular (CV) disease than the general population. CV disease is the leading cause of death in childhood cancer survivors. The increasing need to manage cancer survivor patients has led to the rapid creation and adaptation of cardio-oncology. Cardio-oncology is a multidisciplinary science that monitors, treats, and prevents CTRCD. Many guidelines and position statements have been published to help diagnose and manage CTRCD, including those from the American Society of Clinical Oncology, the European Society of Cardiology, the Canadian Cardiovascular Society, the European Society of Medical Oncology, the International Late Effects of Childhood Cancer Guideline Harmonization Group, and many others. However, there remains a gap in identifying high-risk patients likely to develop cardiomyopathy and HF in later life, thus reducing primary and secondary measures being instituted, and when to start treatment when there is echocardiographic evidence of left ventricular (LV) dysfunctionswithout symptoms of HF. There are no randomized controlled clinical trials for treatment for CTRCD leading to HF in childhood cancer survivors. The treatment of HF due to cancer treatment is similar to the guidelines for general HF. This review describes the latest pharmacologic therapy for preventing and treating LV dysfunction and HF in childhood cancer survivors based on expert consensus guidelines and extrapolating data from adult HF trials.

Improving quality and quantity of life for childhood cancer survivors globally in the twenty-first century.

The contributions of cooperative groups to performing large-cohort clinical trials and long-term survivorship studies have facilitated advances in treatment, supportive care and, ultimately, survival for patients with paediatric cancers. As a result, the number of childhood cancer survivors in the USA alone is expected to reach almost 580,000 by 2040. Despite these substantial improvements, childhood cancer survivors continue to have an elevated burden of chronic disease and an excess risk of early death compared with the general population and therefore constitute a large, medically vulnerable population for which delivery of high-quality, personalized care is much needed. Data from large survivorship cohorts have enabled the identification of compelling associations between paediatric cancers, cancer therapy and long-term health conditions. Effectively translating these findings into clinical care that improves the quality and quantity of life for survivors remains an important focus of ongoing research. Continued development of well-designed clinical studies incorporating dissemination and implementation strategies with input from patient advocates and other key stakeholders is crucial to overcoming these gaps. This Review highlights the global progress made and future efforts that will be needed to further increase the quality and quantity of life-years gained for childhood cancer survivors.

Demographic predictors of successful transition to adult survivorship care for survivors of pediatric cancer.

10050 Background: There is a growing number of childhood cancer survivors in the U.S. (Chow et al., 2020) who are at risk for experiencing negative long-term health outcomes (Oeffinger et al., 2006). Current guidelines state the importance of receiving risk-based follow-up at adult survivorship clinics, yet available estimates suggest that less than 50% of survivors receive yearly survivorship care (Landier et al., 2004; Daly et al., 2018). The transition from pediatric to adult care is a difficult process, with various factors acting as barriers (Devine et al., 2017). The present study sought to evaluate demographic predictors of successful transition to adult survivorship care in a Midwestern clinic serving a large urban and rural catchment area. Methods: The study includes adult survivors of childhood cancer (n = 203) who received pediatric or adult survivorship care in a Midwestern metropolitan area from 2015 to 2022. For this study, successful transition to adult care was defined as attending at least one appointment in the adult survivorship clinic. Dates of clinic attendance, cancer diagnosis, insurance data, and zip code were abstracted from the medical record. 86.2% of survivors had commercial insurance, 13.8% had government -sponsored insurance, self-pay or other insurance. Participant zip codes were 66.7% urban, 19.5% metropolitan (low and high commuting), 9.2% micropolitan, and 4.6% rural. Survivor ages ranged from 20 to 68 years (M = 29.48, SD = 7.74) and 53.2% were female. Participant-reported race/ethnicity was 90.1% White, 5.4% Hispanic, 3.4% Black and 1% Other. Results: 66% of the sample attended at least 1 appointment in the adult survivorship clinic. Chi-square analyses revealed a significant relationship between insurance type and attendance at the clinic, [Χ2(1) = 16.60, p < .001], such that a greater proportion of survivors with commercial insurance transitioned to adult survivorship care (71%), compared to government-assisted (Medicare), self-pay or other insurance (32%). Analyses revealed a significant relationship between rurality and transition, [Χ2(3) = 14.11, p < .01], such that a greater proportion of survivors from urban areas transitioned (74%) compared to rural areas (22%). Race/ethnicity, gender and cancer type were not significantly associated with transition. Conclusions: Results suggest that a lack of commercial insurance and rurality served as risk factors for not successfully transitioning to an adult survivorship clinic, highlighting opportunities for improvement in clinic reach.

Loss to follow-up of minorities, adolescents, and young adults on clinical trials: A report from the Children's Oncology Group.

The increasing number of childhood cancer survivors necessitates continued follow-up to monitor for long-term complications. Inequities in loss to follow-up for patients enrolled on pediatric clinical trials have not been well studied. This was a retrospective study of 21,084 patients residing in the United States enrolled on phase 2/3 and phase 3 Children's Oncology Group (COG) trials between January 1, 2000 and March 31, 2021. Rates of loss to follow-up to COG were evaluated using log-rank tests and multivariable Cox proportional hazards regression models with adjusted hazard ratios (HRs). Demographic characteristics included age at enrollment, race, ethnicity, and zip code level socioeconomic data. Adolescent and young adult (AYA) patients 15-39years old at diagnosis had an increased hazard of loss to follow-up compared to patients 0-14years old (HR, 1.89; 95% confidence interval (CI), 1.76-2.02). In the overall cohort, non-Hispanic Blacks were found to have an increased hazard of loss to follow-up compared to non-Hispanic Whites (HR, 1.56; 95% CI, 1.43-1.70). Among AYAs, the highest loss to follow-up rates were among non-Hispanic Blacks (69.8%±3.1%), patients on germ cell tumor trials (78.2%±9.2%), and patients living in zip codes with a median household income ≤150% of the federal poverty line at diagnosis (66.7%±2.4%). AYAs, racial and ethnic minority patients, and those living in lower socioeconomic status areas had the highest rates of loss to follow-up among clinical trial participants. Targeted interventions are warranted to ensure equitable follow-up and improved assessment of long-term outcomes. Little is known about disparities in loss to follow-up for pediatric cancer clinical trial participants. In this study, we found that participants who were adolescents and young adults when treated, those who identified as a racial and/or ethnic minority, or those residing in areas with lower socioeconomic status at diagnosis were associated with higher rates of loss to follow-up. As a result, the ability to assess their long-term survival, treatment-related health conditions, and quality of life is hindered. These findings suggest the need for targeted interventions to improve long-term follow-up among disadvantaged pediatric clinical trial participants.

Diagnosis and Management of Cancer Treatment-Related Cardiac Dysfunction and Heart Failure in Children.

It is disheartening for parents to discover that their children have long-term cardiac dysfunction after being cured of life-threatening childhood cancers. As the number of childhood cancer survivors increases, early and late oncology-therapy-related cardiovascular complications continues to rise. It is essential to understand that cardiotoxicity in childhood cancer survivors is persistent and progressive. A child's cancer experience extends throughout his lifetime, and ongoing care for long-term survivors is recognized as an essential part of the cancer care continuum. Initially, there was a lack of recognition of late cardiotoxicities related to cancer therapy. About 38 years ago, in 1984, pioneers like Dr. Lipshultz and others published anecdotal case reports of late cardiotoxicities in children and adolescents exposed to chemotherapy, including some who ended up with heart transplantation. At that time, cardiac tests for cancer survivors were denied by insurance companies because they did not meet appropriate use criteria. Since then, cardio-oncology has been an emerging field of cardiology that focuses on the early detection of cancer therapy-related cardiac dysfunction occurring during and after oncological treatment. The passionate pursuit of many healthcare professionals to make life better for childhood cancer survivors led to more than 10,000 peer-reviewed publications in the last 40 years. We synthesized the existing evidence-based practice and described our experiences in this review to share our current method of surveillance and management of cardiac dysfunction related to cancer therapy. This review aims to discuss the pathological basis of cancer therapy-related cardiac dysfunction and heart failure, how to stratify patients prone to cardiotoxicity by identifying modifiable risk factors, early detection of cardiac dysfunction, and prevention and management of heart failure during and after cancer therapy in children. We emphasize serial longitudinal follow-ups of childhood cancer survivors and targeted intervention for high-risk patients. We describe our experience with the new paradigm of cardio-oncology care, and collaboration between cardiologist and oncologist is needed to maximize cancer survival while minimizing late cardiotoxicity.

Abstract IA033: The impact of race, ethnicity, culture, and well-being among childhood cancer survivors and their parent caregivers

Abstract The number of childhood cancer survivors (CCS) has increased over the past 30 years due to improvements in the treatment of cancers affecting this population; however, most CCS experience late adverse effects from their cancer treatment. In many cases, when a child is diagnosed with cancer, parents serve as primary caregivers throughout their child's cancer journey by providing them with medical, informational, and emotional support. Even when CCS become young adults, parents often remain involved with medical care and help CCS transition from pediatric to adult-focused survivorship care. Unfortunately, the proportion of young adult CCS engaged in survivorship follow-up care rapidly declines with increasing age and time since treatment. Disengagement in follow-up care results in inadequate medical surveillance for late effects and a missed opportunity for survivorship-focused care, including psychosocial screening and supportive care referral. The decline in long-term follow-up care is multifactorial and includes patient, provider, and system-related barriers to care. This session will present a brief overview of CCS and parents from racial and ethnic minority backgrounds who experience significant health disparities, including inequities in cancer treatment and access to care compared to non-Hispanic whites. This session will also highlight the work from the Center for Young Adult Cancer Survivorship Research; a dual institutional center focused on survivorship care and quality of life among multi-ethnic survivors (predominantly Hispanic). Recent research examining racial/ethnic disparities included other related factors such as socioeconomic status, language preference, nativity, and acculturation, which provided insight into how to best address these multifactorial aspects of racial/ethnic disparities in this population. Lastly, this session will review a recent report by Mobley et al., 2021 that described systematic barriers to CCS survivorship care and discussed new opportunities to address these health care barriers. Citation Format: Carol Y. Ochoa. The impact of race, ethnicity, culture, and well-being among childhood cancer survivors and their parent caregivers [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr IA033.

Efficacy of interdisciplinary rehabilitation in child cancer survivors: Impact on physical fitness, fatigue and body composition after 1-year follow-up.

Childhood cancer survivors experience reduced physical activity level, participation as well as health-related quality of life. This prospective, pre-/post-intervention and follow-up cohort study aims to determine the efficacy of an interdisciplinary rehabilitation on improving physical fitness, fatigue and body composition. A total of 24 childhood cancer survivors (mean age: 12.15 years ± 3.2; 14 females; 10 males) were recruited 6 months after medical treatment and received a 4-month interdisciplinary intervention. Cardiorespiratory fitness (PredVO2peak and PredLoadmax ), body composition (dry lean weight) and quality of life (general fatigue) were assessed at baseline, post-intervention and 1-year follow-up. Linear mixed models were used to analyse data. Linear mixed modelling revealed a significant main effect of time on predicted maximal load (F = 13.189, df = 36.179, p < 0.001), dry lean weight (F = 64.813, df = 37.019, p < 0.001) but also significant improvement of general fatigue score (-9.039 ± 4.300, 95% CI -17.741 to -0.336, p = 0.042), indicating a decline in general fatigue. With emerging evidence that physical activity is safe and feasible, together with increasing numbers of childhood cancer survivors at risk for long-term chronic co-morbidities, this study advocates for better access to interdisciplinary rehabilitation programmes in order to improve their physical condition and their body composition and reduce fatigue.

A Mobile Application for Childhood Cancer Survivorship Care: A Cross Sectional Survey Study

The population of childhood cancer survivors (CCS) is growing, along with the number of CCS who will experience physiological and psychosocial late effects from their prior cancer treatments. Educational interventions need.

Late pulmonary complications related to cancer treatment in children.

As the number of childhood cancer survivors increases, a heightened awareness and recognition of therapy-related late effects is becoming more important. Pulmonary complications are the third leading cause of late mortality in cancer survivors. Diagnosis of these complications on chest imaging helps facilitate prompt treatment to mitigate adverse outcomes. In this review, we summarize the imaging of late pulmonary complications of cancer therapy in children and highlight characteristic findings that should be recognized by radiologists.

INSP-07. Improving cognitive outcomes for children treated for cancer: moving beyond the cure

With improved survival rates, increasing numbers of childhood cancer survivors are living with long-term cognitive deficits that negatively impact their ability to attain important life milestones. Our collaborative research program has focused on characterizing cognitive outcomes associated with specific treatment modalities to inform modifications in front-line therapy. This line of investigation has demonstrated the negative cognitive impact of high radiation dose/large treatment volume, posterior fossa syndrome, treatment-related ototoxicity, and lower socioeconomic status (SES). Research-informed, treatment approaches under investigation include proton radiotherapy and hippocampal sparing irradiation, molecularly based risk-adapted therapy, surgical approaches with reduced risk of injury, and on-therapy otoprotectants, as well as identification of modifiable factors that are driving the protective effects of higher SES. Our research also strives to improve specification of cognitive deficits following treatment, at the behavioral and neural systems level, to identify targets for intervention. Study findings have revealed disease- and treatment- related alterations in neural systems supporting attention, working memory, and executive functions, as well as genetic factors that increase risk for cognitive late effects. We are now using sophisticated connectivity brain mapping with enhanced sensitivity to behaviorally-relevant changes in brain organization and sensitivity to intervention-based neuroplasticity to guide cognitive intervention development. A primary research focus moving forward is development of empirically validated interventions that prevent or mitigate cognitive late effects among childhood cancer survivors. Our studies have demonstrated the efficacy of stimulant medications, computerized cognitive training, and aerobic exercise for children treated for cancer, as well as the limitations to these approaches. Current investigations include use of neuroprotectant agents during radiotherapy, combining multiple interventions, interventions tailored to children undergoing treatment in infancy, and the use of virtual reality to increase intervention engagement. Our ultimate benchmark of success is ensuring children are not only cured of cancer but also experience a high quality of life.

\u201cI don\u2019t take for granted that I am doing well today\u201d: a mixed methods study on well-being, impact of cancer, and supportive needs in long-term childhood cancer survivors

PurposeWith increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS’ needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors’ wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors’ unmet needs.MethodIn this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer.ResultsOverall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and psychological distress (42%). Health was considered to encompass both: physical and emotional aspects of wellbeing. Cancer positively impacted CCS’ ability to care and attitude towards life, whereas relationships and insurance were negatively impacted. Risks for unmet needs increased in CCS with self-reported low health status, late effects, psychological distress, with older age at study or longer time since end of treatment.ConclusionIn our study, many CCS experienced various psychosocial, psychological and informational unmet needs, indicating that survivors’ needs are currently not duly addressed. Current efforts to provide supportive psychosocial care in Switzerland should be further operationalized to provide adequate support.

Health outcomes in offspring born to survivors of childhood cancers following assisted reproductive technologies.

An increasing number of childhood cancer survivors are using assisted reproductive technologies (ART) to overcome treatment-related fertility impairment. We report perinatal and health outcomes of offspring born to survivors following ART. The FeCt Multicenter Offspring Study surveyed the health of offspring of childhood cancer survivors. Health outcomes in offspring born to survivors following ART (n = 57, 4.6%) or after spontaneous conception (n = 1182) were assessed in the German cohort (n = 1239) using bivariate analysis. Findings were put into the context of the general German population by health outcome assessment in 1:1 matched-pair analysis (n = 2478). Nearly twice the survivors used ART compared with numbers reported for the German general population (4.6% vs. 2.6%). Successful pregnancies were achieved after a median of two cycles, mainly using non-cryopreserved oocytes/sperm. Multiple sibling births (p < 0.001, 28.1% vs. 3.0%) and low birth weight (p = 0.008; OR = 2.659, 95% CI = 1.258–5.621) occurred significantly more often in offspring born to survivors who utilized ART than spontaneously conceived children, whereas similar percentages were born preterm or too small for their gestational age. ART did not increase the prevalence of childhood cancer or congenital malformations in offspring born to survivors. ART use by childhood cancer survivors was successful with both fresh and cryopreserved oocytes/sperm, and did not influence perinatal health or health outcomes when known confounders were taken into account. Oncofertility is an important component of patient care. Our study implicates that the utilization of ART by adult survivors of childhood cancer does not put offspring at additional risk for adverse perinatal or health outcomes.

Factors Influencing Resilience among Korean adolescents and young adult survivors of childhood cancer.

The number of childhood cancer survivors has been steadily increasing because of improved cancer treatment outcomes. We aimed to examine the level of cancer stigma, coping, spirituality, hope, family communication, social support and resilience in adolescent and adult childhood cancer survivors and identify factors associated with resilience. This study is a descriptive survey conducted on 139 childhood cancer survivors aged 15-29 years who had been diagnosed with cancer prior to the age of 19 years at a general hospital in Seoul. The questionnaire consisted of the Cancer Stigma Scale, Jalowiec Coping Scale, Functional Assessment of Chronic-Illness Therapy-Spirituality (FACIT-Sp), Hearth Hope Index (HHI), Parent-Adolescent Communication Inventory (PACI), Multidimensional Scale of Perceived Social Support (MSPSS), and Haase Resilience in Illness Scale (HARS). Collected data were analyzed using multiple linear regression analysis with SPSS 23.0. Resilience positively correlated with courageous coping, spirituality, hope, family communication and social support, and negatively correlated with cancer stigma and defensive coping. Regression analyses revealed that courageous coping (β=0.303, p<.001), hope (β=0.317, p=.001), and solid tumor diagnosis (β=-0.144, p=.012) were significantly predictive of resilience among childhood cancer survivors, and these factors explained 65.2% of the variance. Resilience among childhood cancer survivors was higher with increasing courageous coping and hope and lower with solid tumors. These results suggest that coping and hope management should be included in the strategies to enhance the resilience of AYA cancer survivors.

Home-Based Telehealth Exercise Intervention in Early-On Survivors of Childhood Acute Lymphoblastic Leukemia: Feasibility Study.

BackgroundAcute lymphoblastic leukemia is the most common type of pediatric cancer. Acute lymphoblastic leukemia causes an altered bone mineral homeostasis state, which can contribute to osteopenia, and bone fractures, most commonly vertebral fractures. With the increasing number of childhood cancer survivors, late adverse effects such as musculoskeletal comorbidities are often reported and are further influenced by inactive lifestyle habits. Physical activity has been shown to increase the mechanical workload of the bone, mitigating bone impairment in other cancer-specific populations.ObjectiveThis interventional pilot study aims to investigate the use of telehealth to deliver a home-based exercise intervention for early-on survivors of bone marrow–related hematological malignancies and to assess its impact on survivors’ musculoskeletal and functional health.MethodsWe aimed to recruit a group of 12 early-on survivors of acute lymphoblastic leukemia, within 6 months to 5 years of treatment, to participate in and complete the proposed telehealth intervention with a parent. The 16-week intervention included 40 potential home-based physical activity interventions supervised by a kinesiologist through a telehealth internet platform, with monthly progression. Patients were recruited to the cohort if they were able to participate in the intervention during the first month (minimum 12 weeks of intervention). Evaluation before and after the intervention protocol highlighted differences in functional capacities and musculoskeletal health of patients using mechanography, peripheral quantitative computed tomography, 6-minute walk test, and grip force test.ResultsThe recruitment rate for the intervention was low (12/57, 21% of contacted patients). Of 12 patients, 3 were excluded (1=relapse, 1=failure to meet technical requirements, and 1=abandoned). The 9 patients who completed the intervention (6 girls; mean age 10.93, SD 2.83 years; mean BMI 21.58, SD 6.55 kg/m2; mean time since treatment completion 36.67, SD 16.37 months) had a mean adherence of 89% and a completion rate of 75%. In addition, these patients showed functional improvements in lower limb muscle force and power as well as in the 6-minute walk test distance. Participants also showed improved bone health after the intervention on the following parameters: bone mineral content, stress-strain index, total and cortical cross-sectional area at the 14% site (P=.03, P=.01, P=.01, and P=.001, respectively) and 38% site of the tibia (P=.003, P=.04, P=.001, and P=.003, respectively).ConclusionsHigh adherence and participation rates suggest that telehealth is a feasible method to deliver exercise interventions to young early-on survivors of acute lymphoblastic leukemia. The proposed intervention seems promising in providing benefits to patients’ functional performance and bone health, but a large-scale study is needed to confirm this assumption.

Attitudes and Perceptions of Parenthood Among Young Adult Survivors of Childhood Cancer.

Purpose: Increasing numbers of childhood cancer survivors enter adulthood and encounter decisions surrounding parenthood. However, limited research has systematically examined how childhood cancer may influence parenthood attitudes among survivors. Methods: Adult survivors of childhood cancer, who had or wanted to have children (N = 77; Mage = 30.2 years, range: 22-43; 91% White), rated their perceived impact of cancer at enrollment and parenthood attitudes using the "Attitudes to Parenthood After Cancer Scale" 2 years later. First, internal consistencies for the parenthood measure were examined, and modified subscales were proposed. Second, hierarchical stepwise regressions analyzed the contribution of background factors and cancer's impact on parenthood attitudes. Results: Reevaluation of parenthood items yielded four subscales with improved internal consistency (α's > .78): improved parenting due to cancer, no children due to cancer, concerns about a (potential) child's health, and parenthood desire irrespective of own health concerns. Already having children (n = 38) was related to more favorable ratings on most subscales. Older age was associated with perceiving improved parenting due to cancer (r = .24) and shorter time since diagnosis was related to considering having no children due to cancer (r = -.23). Hierarchical stepwise regressions reconfirmed parenthood status as related to more favorable parenting attitudes. Cancer preoccupation and perceiving cancer as a most difficult life experience predicted more concerns toward parenthood (R2 = .044-.216). Conclusions: Parenthood attitudes were more favorable among survivors with children, who were older, and/or further into survivorship. Survivors burdened by their cancer experience reported more concerns about parenthood. Childhood cancer may shape parenthood perceptions positively and negatively, warranting further research to inform interventions.

Patient and Parent Experiences with Group Telerehabilitation for Child Survivors of Acute Lymphoblastic Leukemia.

Background: Acute Lymphoblastic Leukemia (ALL) is the most common pediatric cancer. ALL and its treatment cause altered bone-mineral homeostasis, which can contribute to musculoskeletal late adverse effects (LAEs). With the increasing number of childhood cancer survivors, LAEs are reported often, and are aggravated by inactive lifestyles. A telerehabilitation program is proposed to strengthen the muscle–bone complex and prevent future impairment. Objective: This study aimed to explore and better understand patient and parent experience of a telerehabilitation program after completion of ALL treatment. Methods: ALL survivors (n = 12), 75% girls, 7.9 to 14.7 years old, within six months to five years of treatment, were recruited to participate in the proposed study, along with a parent. The 16-week group program included 40 potential home-based physical activities, with monthly progression, supervised by a kinesiologist, through an online telerehabilitation platform. Patients could be included in the study if they joined during the first month of intervention of their group (minimum 12 weeks of intervention). A semi-structured post-intervention interview was conducted with the patients and their parent during the final assessment, along with a review of the kinesiologist’s clinical notes, to obtain a portrait of the participants’ experience with the telerehabilitation program. Overarching themes were identified by one author and confirmed by two senior authors before extracting the various aspects of each theme. Results: Of the 12 patients recruited, three were excluded from the analysis because they did not complete the minimum 12 weeks of intervention (one = relapse, one = failure to meet technical requirements, and one = abandoned due to parent’s disinterest). The nine patients who completed the program (six girls; 10.93 ± 2.83 years) had a mean adherence of 89%. The overarching themes identified were the program modalities (group approach with patient–parent paired training, supervised by a kinesiologist), the telerehabilitation system, the participants’ perception of the benefits, and recommendations and suggestions from the families. Both patients and parents expressed very high satisfaction with the program and perceived benefits. Conclusion: Participants appreciated the program and reported they would all recommend it to other families in similar situations. The telerehabilitation method of service delivery was perceived by some as decisive in choosing to participate, while the supervision and intra- and inter-family interactions were the motivating factors that were key to program adherence.

Personalized Massive Open Online Course for Childhood Cancer Survivors: Behind the Scenes.

Today, in France, it is estimated that 1 in 850 people aged between 20 and 45 years has been treated for childhood cancer, which equals 40,000 to 50,000 people. As late effects of the cancer and its treatment affect a large number of childhood cancer survivors (CCS) and only 30% of them benefit from an efficient long-term follow-up care for prevention, early detection, and treatment of late effects, health education of CCS represents a challenge of public health. Massive open online courses (MOOCs) are a recent innovative addition to the online learning landscape. This entertaining and practical tool could easily allow a deployment at a national level and make reliable information available for all the CCS in the country, wherever they live. The MOOC team brings together a large range of specialists involved in the long-term follow-up care, but also associations of CCS, video producers, a communication consultant, a pedagogical designer, a cartoonist and a musician. We have designed three modules addressing transversal issues (lifestyle, importance of psychological support, risks of fertility problems) and eight modules covering organ-specific problems. Detailed data on childhood cancer treatments received were used to allocate the specific modules to each participant. This paper presents the design of the MOOC entitled "Childhood Cancer, Living Well, After," and how its feasibility and its impact on CCS knowledge will be measured. The MOOC about long-term follow-up after childhood cancer, divided into 11 modules, involved 130 participants in its process, and resulted in a 170-minute film. The feasibility study included 98 CCS (31 males vs. 67 females; p < 0.0001). Such personalized, free, and online courses with an online forum and a possible psychologist consultation based on unique characteristics and needs of each survivor population could improve adherence to long-term follow-up without alarming them unnecessarily.