Late Effects Of Cancer Treatment Research Articles

Involving community pharmacies in management of late effects of cancer treatment: Opinions from cancer survivors.

BackgroundMore than 50 % of cancer survivors experience late effects of cancer (LEC). Current models of follow-up care often prove inadequate, resulting in unresolved LEC. Given the pivotal role of community pharmacists as the most accessible healthcare professionals and the demonstrated benefits of evidence-based pharmacy services on patient centered care, exploring the potential contribution of community pharmacies in managing LEC is relevant. ObjectiveThis study aimed to investigate cancer survivors' needs, preferences, and attitudes regarding pharmacy involvement in managing LEC. MethodThe developed questionnaire based on validated instruments underwent a pilot test among cancer survivors at four Danish community pharmacies. In August 2021, the questionnaire was distributed to all 611 cancer survivors of the Danish Cancer Society's cancer patient panel. The resulting quantitative data were subjected to descriptive statistical analysis, while qualitative data underwent a thematic content analysis. ResultsAmong the 611 panel members, 354 responded to the questionnaire (response rate 58 %). Fatigue was the most frequent LEC experienced by 88 % of respondents. Three out of four (75 %) of respondents expressed dissatisfaction with the level of counseling they had received regarding LEC, and 23 % disclosed not having discussed LEC with a healthcare professional despite feeling the need to do so. Nearly all respondents visited pharmacies annually and used available products to alleviate LEC. Approximately half of respondents expressed a need for counseling on the appropriate use of these products. While nearly half of respondents were receptive to pharmacy-based counseling, concerns regarding discretion and staff knowledge were prevalent. ConclusionCancer survivors experience an insufficiency in counseling on LEC and demonstrate an openness towards involving community pharmacies in addressing this gap. However, further investigation is warranted to delineate survivors' specific needs and expectations regarding community pharmacy involvement in LEC management. Additionally, suggestions from survivors underscore the importance of enhancing pharmacy staff knowledge and establishing discreet counseling areas.

Prevalence of survivors of childhood cancer based on a population-based cancer registry in Osaka, Japan.

Although the survival rate of patients with childhood cancer has greatly improved, long-term survivors face specific problems such as the late effects of cancer treatment. In this study, we estimated the number of people who had experienced childhood cancer to predict their needs for medical care and social resources. Using data from the population-based Osaka Cancer Registry, we identified children aged 0-14 years who were diagnosed with cancer between 1975 and 2019. We estimated the prevalence on December 31, 2019, and the 5- and 10-year prevalence (i.e., the number of survivors living up to 5 or 10 years after the diagnosis of cancer) over time. The prevalence proportion was age-standardized using a direct standardization method. The prevalence estimates for Osaka were applied to the national population to determine the national prevalence in Japan. Among 8186 patients diagnosed with childhood cancer in Osaka, 5252 (987 per million) survived until December 31, 2019. The 5-year prevalence per million increased from 194 in 1979 to 417 in 2019 (+116%), while the 10-year prevalence increased from 391 in 1984 to 715 in 2019 (+83%). Based on the long-term registry data, an estimated 73,182 childhood cancer survivors were living in Japan by the end of 2019. The increasing 5-year and 10-year prevalence proportions indicate the continued need for cancer survivorship support for children, adolescents, and young adults. These estimates of the prevalence of childhood cancer survivors, including long-term survivors, may be useful for policymakers and clinicians to plan and evaluate survivorship care.

Longitudinal adherence to surveillance for late effects of cancer treatment: a population-based study of adult survivors of childhood cancer.

Adult survivors of childhood cancer are at elevated risk of morbidity and mortality compared to the general population, but their adherence to lifelong periodic surveillance is suboptimal. We aimed to examine adherence to surveillance guidelines for high-yield tests and identify risk factors for nonadherence in adult survivors of childhood cancer. In this retrospective, population-based cohort study, we used health care administrative data from Ontario, Canada, to identify adult survivors of childhood cancer diagnosed between 1986 and 2014 who were at elevated risk of therapy-related colorectal cancer, breast cancer, or cardiomyopathy. Using a Poisson regression framework, we assessed longitudinal adherence and predictors of adherence to the Children's Oncology Group surveillance guideline. Among 3241 survivors, 327 (10%), 234 (7%), and 3205 (99%) were at elevated risk for colorectal cancer, breast cancer, and cardiomyopathy, respectively. Within these cohorts, only 13%, 6%, and 53% were adherent to recommended surveillance as of February 2020. During a median follow-up of 7.8 years, the proportion of time spent adherent was 14% among survivors at elevated risk for colorectal cancer, 10% for breast cancer, and 43% for cardiomyopathy. Significant predictors of adherence varied across the risk groups, but higher comorbidity was associated with adherence to recommended surveillance. Survivors of childhood cancer in Ontario are rarely up to date for recommended surveillance tests. Tailored interventions beyond specialized clinics are needed to improve surveillance adherence.

Care Models and Barriers to Long-Term Follow-Up Care Among Childhood Cancer Survivors and Health Care Providers in Asia: A Literature Review.

Most available data evaluating childhood cancer survivorship care focus on the experiences of high-income Western countries, whereas data from Asian countries are limited. To address this knowledge deficit, we aimed to characterize survivorship care models and barriers to participation in long-term follow-up (LTFU) care among childhood cancer survivors (CCSs) and health care providers in Asian countries. Twenty-four studies were identified. Most institutions in China and Turkey adopt the oncology specialist care model, whereas in Japan, India, Singapore, and South Korea, after completion of therapy LTFU programs are available in some institutions. In terms of survivor barriers, findings highlight the need for comprehensive age-appropriate education and support and personalized approaches in addressing individual preferences and challenges during survivorship. Health care professionals need education about potential late effects of cancer treatment, recommended guidance for health surveillance and follow-up care, and their role in facilitating the transition from pediatric to adult-focused care. To optimize the delivery of cancer survivorship care, efforts are needed to increase patient and family awareness about the purpose and potential benefits of LTFU care, improve provider education and training, and promote policy change to ensure that CCSs have access to essential services and resources to optimize quality of survival.

75 Inflammation and post-tx sickness syndrome as an explanation for late effects

The changing epidemiology of head and neck cancer, with an increase in HPV-positive oropharyngeal cancers and the refinement of a multidisciplinary approach, has led to an increase in the prevalence of long-term survivors after treatment. Consequently, a higher proportion of patients are suffering from late effects of the treatments, temporally defined as effects occurring or persisting more than 3 months after the end of the treatments. These late toxicities consist both of locoregional problems and systemic syndromes, with an impact on patients’ quality of life.There is still limited knowledge about the precise causes of these late toxicities, and at the same level, we lack predictive factors able to identify patients at higher risk of late effects. Treatment combinations with surgery followed by (chemo)radiation or with chemotherapy added to radiation with a radiosensitizing effect increase the probability of suffering from the late consequences of the same therapies. Pain, swallowing difficulties, trismus, osteonecrosis, dental disorders, mucositis, xerostomia or sticky saliva, hoarseness, lymphedema, and fibrosis are the most reported symptoms and signs, while fatigue, anxiety, depression, and cognitive impairment are the counterparts at the systemic level.There is growing evidence for the role of inflammation in the progression of cancer and treatment-related side effects. However, for head and neck cancer patients, there are still a lot of unanswered questions related to the role of inflammation as being both related to cancer disease and to the consequences of the intensive treatments carried out for this disease. In particular, it is well known that pro-inflammatory cytokines have been shown to be activated by malignant tumors and cancer treatment, and that their level during treatment is linked to higher acute toxicities. Also, the level of pro-inflammatory cytokines such as interleukin (IL)-1 beta (IL-1β), IL-6, IL-8, and tumor necrosis factor (TNF) has been correlated to higher mucositis, dysphagia, and pain due to the acute toxic effect of chemoradiation. However, researchers have not yet proven the association between the level of proinflammatory cytokines in the acute phase of the treatment and the development of late toxicities. Even the role of the same pro-inflammatory mediators in the follow-up period has a conflicting correlation with the late toxicities reported by the patients. Chronic inflammation may cause fibrosis, one of the key pathological features of radiation-induced late effects such as dysphagia and transforming growth factor beta (TGF-β) and TNF are involved in the formation of fibrosis in irradiated tissue. There is even more debate about the cause of systemic symptoms after cancer treatment. Head and neck cancer patients may develop the post-treatment sickness syndrome, consisting of chronic fatigue, mood alteration, cognitive impairment, and sleep problems, among the most frequently reported symptoms. The neuro-behavioral sickness model recapitulates all these symptoms as being related to the stress induced by the treatment, causing alterations in mood, cognition, nutritional intake, and the neurovegetative system. One of the hypotheses is that activation of peripheral pro-inflammatory cytokine networks transmits signals to the brain, which promote sickness behavior. The tissue damage induced by the oncological treatments would result in a self-perpetuating activation of biological processes, leading to a persistent inflammation condition that results in worsening systemic late effects over time. However, this theory needs to be carefully validated with prospective studies exploring patient-reported outcomes and their correlation with inflammatory mediators. According to this model, if inflammation recapitulates the locoregional and systemic late toxicities induced by the treatments, research should lead efforts to find ways to counteract it. From one side, it is possible to define de-escalating treatments that could offer the same level of cancer control with a reduced burden of acute and late toxicities. This is particularly awaited in HPV-positive cancer patients, who are usually younger patients, obtaining higher survival rates and thus a higher impact of toxicities on quality of life. On the other hand, it is important to define specific protocols to reduce the impact of inflammation in the long-term. In this regard, the role of physical exercise has been clearly underestimated, and recent research has shown benefits for the survival and quality of life of head and neck cancer patients. Also, even with less scientific evidence, nutrition could offer a less inflamed systemic status that could help minimize the late effects of cancer treatment. It is clear that research in this field is in its infancy, and we need to put more efforts into defining the translational correlates of late toxicities and exploring new ways to counteract the post-treatment sickness syndrome.

Depressive symptoms and physical activity among young adult survivors of childhood cancer.

Young adult survivors of childhood cancers are less likely to be physically active compared to non-cancer affected controls, putting them at an increased risk for morbidity and mortality. Preliminary research has examined how mental health may contribute to physical activity (PA) in this population; however, those more recently diagnosed and Hispanic survivors have been understudied. The objectives were to examine associations of dimensions of depressive symptoms, demographic characteristics, and cancer-related predictors with PA among a diverse sample of young adult childhood cancer survivors. Participants (N=895) diagnosed with childhood cancer between 1996 and 2010 (53% Hispanic; Mage =26.2±4.9years; Mage =14.8±4.4years at diagnosis) were recruited from the Los Angeles County cancer registry. Self-report surveys assessed current PA, depressive symptoms (i.e., positive affect, negative affect, somatic symptoms, interpersonal problems), late effects of cancer treatment, and demographic factors. Multivariable ordinal regressions examined the study objectives. About 70% of participants engaged in low or moderate frequency PA (fewer than 3days a week). Participants who were older, female, Asian, or reported more late effects of cancer treatment were less likely to engage in PA. Greater positive affect was significantly associated with higher frequency PA, whereas negative affect, somatic symptoms, and interpersonal problems were not associated with PA. The findings suggests that positive-but not negative-mental health characteristics are more likely to facilitate or result from PA among young adult survivors of childhood cancers. Interventions seeking to increase PA may benefit from considering positive aspects of mental health/well-being.

Late effects of cancer treatment: what nurses need to know

Late effects of cancer treatment: what nurses need to know

Genetic study of type 2 diabetes risk in diverse populations of survivors of childhood cancer: A report from the St. Jude Lifetime Cohort (SJLIFE) and the Childhood Cancer Survivor Study (CCSS).

10029 Background: Type 2 diabetes (T2D) is an established late effect of cancer treatment among long-term survivors of childhood cancer. Genetic factors underpinning T2D in diverse populations of survivors have not been well studied. Methods: We conducted a multi-ancestry genome-wide association study (GWAS) for clinically ascertained T2D among survivors of European (EUR; N = 3,102 with 261 cases) and African (AFR; N = 574 with 43 cases) ancestry from SJLIFE. Replication analyses were performed between ancestries in SJLIFE and in EUR survivors in CCSS (N = 5,965; 270 self-reported cases). Two published T2D polygenic risk scores (PRSs) were assessed in survivors: a 338-variant multi-ancestry PRS (N~1.4 million; 49% non-EUR descent) and a ~6.9 million-variant EUR-only PRS (N~160K; DIAGRAM Consortium and UK Biobank Study). Treatment-related T2D risk effect modification was evaluated for abdominal irradiation and alkylating agents. Results: In SJLIFE AFR survivors, one novel locus with suggestive significance was identified (5p15.2: OR = 10.19, P = 5.1x10-7), replicating in both SJLIFE EUR (P = 0.011) and CCSS EUR survivors (P = 0.021). A EUR-specific genome-wide significant association at 8q11.21 ( SNTG1 intronic variant; OR = 1.99; P = 4.4x10-8) was replicated in CCSS (P = 8.1x10-3). Two other loci with suggestive associations (P < 5x10-6) in SJLIFE EUR survivors replicated in SJLIFE AFR survivors (P < 0.05), achieving genome-wide significance in multi-ancestry meta-analysis (2p25.3: OR = 2.05, P = 4.5x10-8; 19p12: OR = 2.43 P = 5.7x10-9). Each of the three novel trans-ancestral loci overlapped putative Polycomb-repressed regions, i.e., chromatin-based gene regulation elements, in pancreatic cells and displayed treatment-related effect heterogeneity across ancestry groups. Notably, AFR survivors with risk alleles experienced disproportionately greater T2D risk if treated with alkylating agents (2p25.3: OR = 3.95; 19p12: OR = 5.74; 5p15.2: OR = 17.81). Increases in the T2D odds per multi-ancestry PRS standard deviation were consistent in survivors across ancestries (SJLIFE EUR: OR = 1.84, P = 1.1x10-16; SJLIFE AFR: OR = 1.80, P = 2.8x10-3, CCSS EUR: OR = 1.60, P = 8.4x10-13). However, T2D risk association with the EUR-only PRS was absent in AFR survivors (OR = 0.97, P = 0.95). Conclusions: Multi-ancestry genetic analyses revealed three novel T2D risk alleles associated with disproportionately greater alkylating agent-related risk among African-ancestry survivors. Furthermore, an external multi-ancestry T2D PRS was associated with increased risk in diverse ancestry survivors, whereas a EUR-only PRS was not useful for African-ancestry survivors. This study supports precision diabetes surveillance and survivorship care for all childhood cancer survivors, including those in minority ancestry groups.

The Late Effects of Cancer Treatment on Female Fertility and the Current Status of Fertility Preservation-A Narrative Review.

Fertility counseling should be offered to all individuals of young reproductive age early in the patient's trajectory following a cancer diagnosis. Systemic cancer treatment and radiotherapy often have an inherent gonadotoxic effect with the potential to induce permanent infertility and premature ovarian failure. For the best chances to preserve a patient's fertility potential and to improve future quality of life, fertility preservation methods should be applied before cancer treatment initiation, thus multidisciplinary team-work and timely referral to reproductive medicine centers specialized in fertility preservation is recommended. We aim to review the current clinical possibilities for fertility preservation and summarize how infertility, as a late effect of gonadotoxic treatment, affects the growing population of young female cancer survivors.

Deep learning of image-derived measures of body composition in pediatric, adolescent, and young adult lymphoma: association with late treatment effects.

The objective of this study was to translate a deep learning (DL) approach for semiautomated analysis of body composition (BC) measures from standard of care CT images to investigate the prognostic value of BC in pediatric, adolescent, and young adult (AYA) patients with lymphoma. This 10-year retrospective, single-site study of 110 pediatric and AYA patients with lymphoma involved manual segmentation of fat and muscle tissue from 260 CT imaging datasets obtained as part of routine imaging at initial staging and first therapeutic follow-up. A DL model was trained to perform semiautomated image segmentation of adipose and muscle tissue. The association between BC measures and the occurrence of 3-year late effects was evaluated using Cox proportional hazards regression analyses. DL-guided measures of BC were in close agreement with those obtained by a human rater, as demonstrated by high Dice scores (≥ 0.95) and correlations (r > 0.99) for each tissue of interest. Cox proportional hazards regression analyses revealed that patients with elevated subcutaneous adipose tissue at baseline and first follow-up, along with patients who possessed lower volumes of skeletal muscle at first follow-up, have increased risk of late effects compared to their peers. DL provides rapid and accurate quantification of image-derived measures of BC that are associated with risk for treatment-related late effects in pediatric and AYA patients with lymphoma. Image-based monitoring of BC measures may enhance future opportunities for personalized medicine for children with lymphoma by identifying patients at the highest risk for late effects of treatment. • Deep learning-guided CT image analysis of body composition measures achieved high agreement level with manual image analysis. • Pediatric patients with more fat and less muscle during the course of cancer treatment were more likely to experience a serious adverse event compared to their clinical counterparts. • Deep learning of body composition may add value to routine CT imaging by offering real-time monitoring of pediatric, adolescent, and young adults at high risk for late effects of cancer treatment.

Abstract B069: Patient perspectives on reimagining survivorship care: A “Chipotle” model to enhance personalized cancer recovery

Abstract Background: As the population in the United States grows, diversifies, and lives longer, the number of cancer survivors is expected to increase from 15.5 million (2016) to an estimated 20.3 million by 2026. Cancer survivors require surveillance for recurrent and subsequent malignancies, management of long-term and late effects of cancer treatment, consistent care to address comorbid conditions, health promotion and care coordination. Current survivorship care relies on distribution of a highly formulaic survivorship care plans. It likewise lacks mechanisms for communication between the oncology care team and patients’ primary care providers who see them for follow up care. Such service limitations hinder patient-responsive care for ethnically/racially, geographically, culturally and socioeconomically diverse cancer patients. Methods: Between 2020 and 2021, we convened a socio-demographically diverse Patient Advisory Board (PAB) to explore ways to improve survivorship care. All PAB members had breast or gynecological cancer diagnoses within the past five years. The research team developed discussion guides prior to each meeting to facilitate a wide ranging conversation. We conducted five PAB meetings via Zoom, maintained communication via email, and distributed four surveys on the web-based Snap Survey platform to discuss topics brought up during previous meetings or to introduce ideas for in-depth discussion at next meetings. We recorded conversations, transcribed them, and used thematic coding to identify key points for care transformation. Results: PAB members highlighted three key ideas to improve survivorship care. 1) It should not begin after treatment concludes, instead, it is a continuum with three distinct stages: diagnosis, treatment, and post-treatment. 2) Tailored documents should be generated for each patient at each stage containing stage specific medical information as well as guidance and resources on topics aligned with the patient’s unique goals for recovery. 3) Communication between a patient’s PCP and the oncology care team should begin at diagnosis and continue post-treatment, and include the patient. The PAB and research team envisioned a “Chipotle” model whereby patients have the opportunity to customize their care needs by choosing from a menu of options. The foundation (or “tortilla”) of this model allows for standard medical information to be included and serve as the foundational layer. At each survivorship stage, patients could add selected “toppings” as needed (i.e., mental health services, financial counseling, nutrition, sexual health and education, and exercise and well-being) to encourage cancer recovery. PAB members suggested that this model would allow them to play an active role in their survivorship care journeys. Conclusion: The PAB outlined a clear potential design to improve cancer survivorship care. Future work should pilot this new design to determine the acceptability and usefulness of such a model. Citation Format: Shoshana Adler Jaffe, Stephanie Rieder, Amy C. Gundelach, Tawny Boyce, Teresa Rutledge, Zoneddy Dayao, Andrew L. Sussman, Miria Kano. Patient perspectives on reimagining survivorship care: A “Chipotle” model to enhance personalized cancer recovery [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 B069.

Epigenetic Age Acceleration and Risk for Chronic Health Conditions in a Diverse Cohort of Survivors of Childhood Acute Lymphoblastic Leukemia

Background: Survivors of childhood cancer are at risk for multiple treatment related morbidities, including the early onset of chronic health conditions (CHC) that are late effects of cancer treatment. Epigenetic age acceleration (EAA), i.e., DNA methylation (DNAm)-predicted age in excess of chronologic age, characterizes survivors of childhood cancer vs. controls that have no cancer history and is suggestive of premature, accelerated aging in this population. Further, among these survivors, greater EAA is associated with cardiometabolic, pulmonary, and neurologic late effects of cancer treatment. We examined the relationship between EAA and CHC in a diverse cohort of survivors of childhood leukemia, to better understand the impact of DNAm on outcome disparities. Approach: The study population included survivors of acute lymphoblastic leukemia (ALL) diagnosed at Texas Children's Hospital between 1992 and 2013 and seen at least once in the Texas Children's Cancer Center Long-Term Survivor Clinic. Demographics, diagnosis, treatment data, and date of onset and type of CHC were abstracted from the electronic health record. CHCs were defined as diagnoses attributed to the patient in the medical record and present for ≥ 1 year. CHCs were categorized by system. Germline DNA was obtained from survivors at least one year off therapy, and analyzed on an iScan System by Illumina MethylationEPIC BeadChip array in the Baylor College of Medicine Lab for Translational Genomics. Methylation data were processed using minfi, normalized with noob, and EAA estimated using the Horvath calculator. Clinical determinants of EAA were identified overall and at specified time periods after the completion of therapy using multivariable linear regression. The relationship between EAA and CHCs were assessed by multivariable Cox regression in a subset of Hispanics and non-Hispanic White (NHW) survivors. All analyses were adjusted for age at diagnosis, age at follow-up, Hispanic ethnicity yes/no, alkylator yes/no, anthracycline yes/no, and cranial radiation therapy (CRT) yes/no. Results: Cases included 268 survivors of ALL: 174 Hispanic, 156 NHW, 29 Black, 6 Asian, and 3 multi-racial. Younger age at diagnosis was associated with endocrine CHC (OR 0.84, 95% CI 0.70, 1.00) and neuropsychiatric CHC, specifically communication disorder (OR 0.82, 95% CI 0.67, 1.00). Older age at diagnosis was associated with obesity (OR 1.14, 95% CI 1.02, 1.28) and depression (OR 1.16, 95% CI 1.02, 1.33). Hispanics were more likely than NHW to have communication disorder (OR 2.92, 95% CI 1.03, 8.27) and learning disability (OR 2.48, 95% CI 1.03, 5.98). EAA was estimated in 171 samples obtained from 96 Hispanics and 75 NHW that were an average of 9.0 years from diagnosis (range: 1.3-21.9y) and stratified into time periods in survivorship: 3-7 years from diagnosis (n=53), 7-13 years from diagnosis (n=73), and >13 years from diagnosis (n=32). CRT was the only factor associated with EAA, including at both the early (beta 3.30, SE 1.31) and late (beta 5.13, SE 1.71) time points. Although EAA did not differ significantly between Hispanics and NHW, Hispanics exposed to CRT demonstrated a more than 4 year increase in EAA (beta=4.47 EAA years, p-value=0.0002), with a null effect on EAA in NHW (Table 1). The relationship between EAA and CHC differed in early vs. late survivorship. In adjusted analyses, EAA determined from samples obtained 3-7 years from diagnosis was associated with any neuropsychiatric CHC, and specifically with learning disability (HR: 1.44, 95% CI: 1.10, 1.87). In contrast, EAA determined from samples obtained >7 years from diagnosis was associated with a greater risk for obesity (HR: 1.21, 95% CI: 1.04, 1.42) and a lower risk for osteopenia (HR: 0.83, 95% CI: 0.70, 0.98). Conclusions: Results from this study confirm prior work indicating an association between EAA and risk for CHC in survivors of childhood cancer. In addition, our findings indicate that the relationship between EAA and specific CHC changes in early vs. late survivorship. Moreover, EAA results in Hispanics vs. NHW suggest a differential response to treatment exposures by survivor ethnicity, specifically with respect to CRT. Future directions of this work include validation of these findings in a diverse, multi-institutional survivor cohort. Table 1: Linear regression model of EAA in Hispanic and Non-Hispanic White survivors of ALL Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

The effect of changing pregnancy intentions on preconception health behaviors: a prospective cohort study

PurposePregnancy intentions are associated with preconception health behaviors but are understudied among female adolescent and young adult (AYA) cancer survivors. Preconception health is critical for survivors because they face unique risks to fertility and pregnancy from late effects of cancer treatments. This study prospectively assessed the effect of pregnancy intention on physical activity (PA) and smoking behaviors among female AYA survivors.MethodsA cohort of 1049 female AYA survivors were recruited between 2013 and 2017. Participants were 18–39 years and had completed primary cancer treatment. Longitudinal mixed effects analysis was conducted on participants who completed at least 2 of 4 questionnaires over 1.5 years. Two measures were used to capture multiple dimensions of pregnancy intention. The pregnancy intention score (PIS) captured wanting and planning dimensions and represented a scaled response of low to high intention. The trying dimension captured urgent intention and ranged from not trying, ambivalent (neither attempting nor avoiding pregnancy), and trying now. Intention change was assessed between each consecutive time points. Final analysis was conducted with multiple imputations.ResultsSurvivors with increased intention measured by trying was associated with increased PA over time (adjusted B [95%CI]: 0.3 [0.01, 0.5]) compared to survivors with no changes or decreased trying intention. PIS was not significantly associated with preconception behaviors. No measure of intention was associated with smoking behavior.ConclusionsIncreasingly urgent pregnancy intention (trying dimension) was associated with higher preconception PA.Implications for cancer survivorsScreening for immediate intentions can identify AYA survivors in need of early preconception health promotion.

A Little Goes a Long Way: Treating Sexual Health in Young Adult Cancer Survivors

ABSTRACT Introduction Cancer treatment can significantly disrupt sexual development and result in sexual dysfunction in young adult cancer survivors (YACS). These symptoms and their potential solutions can be understood through a biopsychosocial framework. Specifically, YACS often experience biological sexual health concerns tied to medical late effects of cancer treatment (e.g., erectile dysfunction after surgery). However, timing of treatment can also lead to disruptions in psychosexual development and result in significant psychosocial sexual health concerns (e.g., social isolation during treatment delays first sexual experience). Despite the impairing and distressing nature of these concerns, the majority of YACS do not receive the services they need as part of survivorship care. When treatment does occur, it generally focuses only on physical symptoms rather than the psychosocial concerns common in YACS. However, even brief treatment with YACS that addresses all aspects of the biopsychosocial framework can be transformative. Objective To demonstrate how sexual health treatment can be tailored to the needs of YACS by presenting two case studies using a biopsychosocial framework. Methods During this presentation I will: 1) Articulate the comprehensive sexual health needs of YACS. 2) Apply the biopsychosocial framework to YACS’ sexual health concerns. 3) Present two clinical cases to illustrate important considerations for addressing sexual health in YACS. Results Case 1: “Sally” is a 30-year-old survivor treated for brain cancer with surgery as an adolescent. She presented to a cancer sexual health clinic with biological (i.e., vaginal atrophy, pelvic pain), psychological (i.e., anxiety about sexual activity), and social (i.e., embarrassment about lack of sexual experience) concerns. Treatment consisted of an intake and nine sessions. It involved psychoeducation (e.g., female sexual pleasure), a referral to both menopause specialist and pelvic floor physical therapy, and role-plays (e.g., how to communicate with parents about desire for increased independence). Sally made significant progress and described the treatment as meaningful: “I'm not the person I was when I started therapy; I felt like a girl, now I finally feel like a woman.” Case 2: “Andrew” is a 24-year-old survivor treated with surgery for testicular cancer as a young adult. He presented to a cancer sexual health clinic with social concerns (i.e., embarrassment about lack of sexual experience). Treatment consisted of an intake and one session; it involved psychoeducation (e.g., normalizing delays in sexual experience in YACS) and role-plays (e.g., how to communicate with potential partners about lack of sexual experience). By the end of treatment, Andrew had his first successful sexual experience with a potential long-term partner. Conclusions YACS rarely receive the necessary attention for sexual health and when they do, treatment often focuses exclusively on biological dysfunction. However, when a biopsychosocial model is employed and comprehensive care is delivered, significant progress can be made, often in short period of time. As illustrated in these case studies, the addition of psychoeducation normalizing delays in sexual experience in YACS and providing concrete steps to initiate romantic relationships can change lives. In the words of one patient, “I had two brain surgeries but [sexual therapy] saved my life.” Disclosure No

Health care expenditures among long-term survivors of pediatric solid tumors: Results from the French Childhood Cancer Survivor Study (FCCSS) and the French network of cancer registries (FRANCIM)

Childhood cancer survivors (CCS) may require lifelong medical care due to late effects of cancer treatments. Little is known about of their healthcare utilization and expenditures at long-term especially in publicly funded health care system. We aim to estimate and describe the health care expenditures among long-term CCS in France. A total of 5319 five-year solid CCS diagnosed before the age of 21 between 1945 and 2000 in France were identified in the French Childhood Cancer Survivors Study cohort (FCCSS) and the French cancer registry. Information about health care expenditure was taken from the French national health data system between 2011 and 2016, and was described according to survivors' characteristics. Generalized linear models were used to determine associations between health care expenditures and survivors' characteristics. Mean annual amount of healthcare expenditures was € 4,255. Expenditures on hospitalizations and pharmacy represents 60% of total expenditures. Mean annual of healthcare expenditures were higher at increasing age, among women survivors (€ 4,795 vs € 3,814 in men) and in central nervous system (CNS) tumor survivors (€ 7,116 vs € 3,366 in lymphoma and € 3,363 in other solid tumor survivors). Childhood cancer survivorship is associated with a substantial economic burden in France. We found that female gender and CNS primary cancer were associated with increased healthcare expenditures.

Integrating primary care and childhood cancer survivorship care: a scoping review protocol

IntroductionImproved treatment regimens have led to increased survival rates among childhood cancer survivors (CCS), and more than 84% of all children diagnosed with cancer will experience long-term survival or cure....

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

To take cancer survivorship research to the next level, it’s important to gain insight in trajectories of changing patient-reported outcomes and impaired recovery after cancer. This is needed as the number of survivors is increasing and a large proportion is confronted with changing health after treatment. Mechanistic research can facilitate the development of personalized risk-stratified follow-up care and tailored interventions to promote healthy cancer survivorship. We describe how these trajectories can be studied by taking the recently extended Dutch population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry as an example. PROFILES combines longitudinal assessment of patient-reported outcomes with novel, ambulatory and objective measures (eg, activity trackers, blood draws, hair samples, online food diaries, online cognitive tests, weighing scales, online symptoms assessment), and cancer registry and pharmacy databases. Furthermore, we discuss methods to optimize the use of a multidomain data collection–like return of individual results to participants, which may improve not only patient empowerment but also long-term cohort retention. Also, advanced statistical methods are needed to handle high-dimensional longitudinal data (with missing values) and provide insight into trajectories of changing patient-reported outcomes after cancer. Our coded data can be used by academic researchers around the world. Registries like PROFILES, which go beyond boundaries of disciplines and institutions, will contribute to better predictions of who will experience changes and why. This is needed to prevent and mitigate long-term and late effects of cancer treatment and to identify new interventions to promote health.

Late Effects of Cancer Treatment, Job Resources, and Burnout Complaints Among Employees With a Breast Cancer Diagnosis 2-10 Years Ago: A Longitudinal Study.

PurposeThe aim of this study was to investigate the effect of possible late effects of cancer treatment (physical complaints, fatigue, and cognitive complaints) and of two job resources (autonomy and supportive leadership style) on future burnout complaints, among employees living 2–10 years beyond breast cancer diagnosis.MethodsData at T1 (baseline questionnaire) and at T2 (9 months later) were collected in 2018 and 2019 (N = 287). These data were part of a longitudinal study among Dutch speaking workers with a cancer diagnosis 2–10 years ago. All complaints and job resources were self-reported. Longitudinal multivariate regression analyses were executed, controlling for years since diagnosis, living with cancer (recurrence or metastasis), and other chronic or severe diseases. Mediation by baseline burnout complaints was considered.ResultsA higher level of fatigue and cognitive complaints at baseline (T1) resulted in higher future burnout complaints (at T2), with partial mediation by baseline burnout complaints. No effect of physical complaints at T1 was observed. Higher levels of autonomy or a supportive leadership style resulted in lower burnout complaints, with full mediation by baseline burnout complaints. Buffering was observed by autonomy in the relationship of cognitive complaints with future burnout complaints. No moderation was observed by supportive leadership.ConclusionThe level of burnout complaints among employees 2–10 years beyond breast cancer diagnosis may be an effect of fatigue or cognitive complaints, and awareness of this effect is necessary. Interventions to stimulate supportive leadership and autonomy are advisable, the latter especially in the case of cognitive complaints.

Endocrine late effects of cancer treatment.

Endocrine disorders are one of the common late complications of cancer treatment in childhood and adulthood. The incidence is more common in individuals who underwent oncology treatment in childhood in whom the estimated prevalence of these disorders is 20-50%. With improving treatment, there is an increasing number of people with a history of cancer treatment and thus persons who are potentially at risk of developing endocrine disorders. In adults, the prevalence of disorders is lower compared to those who had treatment in their childhood; however, endocrinological complications are relatively common even here, although the dia-gnosis is given less attention in adults compared to children. Endocrine disorders are possible complications of practically all treatment modalities used in oncology (radiotherapy, chemotherapy and immunotherapy). In terms of the type of disorders, these mainly include hypofunction or - more rarely - hyperfunction of the endocrine glands and secondary endocrine neoplasms, especially radiotherapy-induced thyroid tumors. The disadvantages of endocrine disorders are often non-specific and slowly developing symptoms. In addition to a clinical examination with an assessment of the presence of possible clinical manifestations, regular laboratory tests should also be performed to allow for early detection. The level of risk of developing endocrine disorders varies and depends on a number of factors, including the age at which the individual underwent treatment as well as the type of treatment: radiation dose, type of chemotherapy, etc. Based on these data, individualized monitoring plan for the individual needs should be made, allowing an early detection of these disorders. The advantage of endocrinological consequences is the fact that if properly and timely dia-gnosed, they are relatively easy to treat and the treatment often allows for full restitution of the condition. The purpose of this article is to present a brief overview about broad spectrum of various possible endocrine complications of cancer treatment, how to dia-gnose and treat them, aiming to increase awareness about this topic among the health care professionals who treat these patients.

Thinking ahead: Parents' worries about late effects of childhood cancer treatment.

Many childhood cancersurvivors experience at least one late effect of treatment, and both late effects and persistent cancer-related worry can negatively impact quality of life in survivorship. Little is known about the prevalence or impact of parental worry about late effects early in treatment. This study evaluated parental perceived likelihood, impact, and worry about late effects of childhood cancer. We surveyed 96 parents of pediatric cancer patients at Dana-Farber/Boston Children's Cancer and Blood Disorders Center within a year of diagnosis. Parents were asked about their experiences with late effects communication, general worry about late effects, and specific late effect worries. Most (96%) parents valued information about late effects, and 93% considered late effects in their treatment decision-making. Yet, 24% could not recall receiving any information about late effects, and only 51% felt well prepared for potential late effects. Though only 20% of parents considered their child at high risk of experiencing late effects, 61% were extremely/very worried about late effects. Those who felt their child was at high risk of experiencing late effects were more likely to worry (OR=4.7, P=0.02). Many parents feel inadequately informed about late effects of cancer treatment, and only one-fifth of parents consider late effects to be likely for their child. However, a majority of parents worry about late effects, including ones they think their child is unlikely to experience. Although some worry is anticipated, disproportionate worry may be mitigated by addressing both educational shortfalls and emotional concerns.