A randomized comparison of online mindfulness-based group sex therapy vs supportive group sex education to address sexual dysfunction in breast cancer survivors.

BACKGROUND: Sexual difficulties and vaginal pain are common following treatment for breast cancer. AIM: The goal of this study was to evaluate an online mindfulness-based group sex therapy vs an online supportive sex education group therapy to address these sexual difficulties. METHODS: Breast cancer survivors (n = 118) were randomized to 1 of the 2 arms; 116 provided informed consent and completed the time 1 assessment. Treatment included 8 weekly 2-hour online group sessions. Those randomized to the mindfulness group completed daily mindfulness exercises, and those in the comparison arm read and completed exercises pertaining to sex education. OUTCOMES: Assessments were repeated at posttreatment and 6 months after the completion of the group. RESULTS: There was a main effect of treatment on primary endpoints of sexual desire, sexual distress, and vaginal pain, with all outcomes showing significant improvements, with no differential impact by treatment arm. Secondary endpoints of interoceptive awareness, mindfulness, and rumination about sex also significantly improved with both treatments, with no group-by-time interaction. CONCLUSION: Both mindfulness-based sex therapy and supportive sex education delivered in group format online are effective for improving many facets of sexual function, vaginal pain, rumination, mindfulness, and interoceptive awareness in breast cancer survivors. STRENGTHS AND LIMITATIONS: We used a randomized methodology. Future studies should seek to diversify participants. CLINICAL IMPLICATIONS: These findings highlight the need to offer similar treatments to more breast cancer survivors immediately after and in the years following cancer treatment as a means of improving survivorship quality of life.

Reviewing the Landscape of Cancer Survivorship: Insights from Dr. Lidia Schapira's Programs and Beyond.

The constantly escalating population of cancer survivors worldwide has prompted a focused exploration of their unique needs and experiences within the context of healthcare medicine. This review initiates its analysis inspired by Dr. Lidia Schapira's insightful keynote conference on the Survivorship 1.0 and Survivorship 2.0 Programs, shedding light on their implementation challenges and setting the stage for a comprehensive analysis of cancer survivorship initiatives. Within the transformed landscape of cancer care, patient-centric strategies embedded in cancer survivorship programs comprising vital elements such as connection, support, and education are presented. While placing cancer recurrence surveillance at the forefront, the review underlines concern regarding the potential oversight of the enduring impact on mental and physical health. Dr. Schapira's insights further extend into the exploration of mental health challenges faced by survivors, promoting an examination of diverse strategies to address these concerns. Furthermore, the discussion continues toward promising areas of research, notably Precision Medicine's role in de-escalating cancer therapies, and advocates for measures such as early cancer awareness and timely referrals to supportive services. Highlighting the significance of education, the role of online resources in enhancing the knowledge of healthcare practitioners and future generations in cancer care is then explored. The paper concludes by presenting some of the most prominent global current survivorship programs, identifying critical knowledge gaps in cancer care and projecting future developments aimed at delivering accurate and holistic care, improving the quality of life for survivors, and enhancing both mental and physical well-being. Drawing upon the insights from Dr. Schapira, this review lays the groundwork for a nuanced exploration of cancer survivorship and its multifaceted implications.

Unexpected early loosening of rectangular straight femoral Zweymüller stems with an alumina-reduced surface after total hip arthroplasty-a prospective, double-blind, randomized controlled trial.

BACKGROUND: Alumina particles from the grit blasting of Ti-alloy stems are suspected to contribute to aseptic loosening. An alumina-reduced stem surface was hypothesized to improve osseointegration and show comparable short-term outcomes to those of a standard stem. METHODS: In this prospective, double-blind, randomized trial, 26 standard (STD) and 27 experimental new technology (NT) stems were implanted. The latter were additionally treated by acid etching and ice blasting to remove alumina particles from the grit-blasting process. Follow-up occurred at 12 and 24 months. Bone mineral density (BMD) around the stem was measured by a dual-energy x-ray absorptiometry device (DEXA). Radiographs were reviewed for alterations. Clinical scoring comprised the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) and the Harris Hip Score (HHS). Survival rates were calculated up to 50 months. RESULTS: Lower mean BMD and more severe cortical hypertrophies were found in the NT group. At 12 months, radiolucent lines were observed mostly in the metaphyseal zone for both groups, with a progression tendency in the NT group at 24 months. At 12 months, pain scores and the WOMAC total and physical activity scores were significantly lower in the NT group, without any differences thereafter. The number of NT stem revisions amounted to 6 (24%) and 11 (41%) at 24 and 50 months, respectively. CONCLUSION: In the NT group, unexpected catastrophic failure rates of 41% caused by early aseptic loosening were noted within 50 months. Compared with the STD stems, NT stems lead to poor clinical and radiographic results. LEVEL OF EVIDENCE: II. TRIAL REGISTRATION: NCT05053048.

Evaluating the Feasibility and Acceptability of a Psychosexual Intervention for Couples Post-allogeneic Hematopoietic Stem Cell Transplantation.

PURPOSE: Allogeneic hematopoietic stem cell transplantation (HSCT) can have a long-term impact on patients' sexual functioning and consequently, their relationship satisfaction. This study aimed to examine the feasibility and acceptability of a 5-session psychosexual intervention for HSCT survivors and their partners. METHODS: To be eligible patients were required to be more than 3 months post-allogeneic HSCT. The intervention comprised 2 components: (1) A psychosexual education session exploring medical/behavioral treatment options for sexual dysfunction, delivered by a specialist nurse; (2) A 4-session Emotionally-Focused Therapy-based relationship education program for couples delivered by a clinical psychologist. Measures assessing relationship quality, sexual functioning, anxiety, and depression were administered pre- and post-intervention. Feasibility was measured via participation rate, adherence and compliance with completing main measures. Acceptability of the intervention was assessed via patient/partner satisfaction surveys. RESULTS: Eight of 85 (9.4%) eligible patients and their partners participated in the study. Reasons for declining participation included: feeling uncomfortable due to sensitive nature of intervention; did not have any relationship/sexual function issues; and experiencing ongoing medical issues. Six of 8 couples (75%) attended at least 4 intervention sessions and 5 of 8 (62.5%) completed the main study measures post-intervention. Four couples reported that sexual satisfaction and relationship satisfaction was somewhat or much better post-intervention; 1 reported no change. CONCLUSION: Feasibility criteria were not met, with low enrolment rate, however the intervention was deemed acceptable. Couples who participated adhered to the intervention and considered it beneficial. Further strategies to identify and manage sexual concerns are required.

Health-related quality of life, psychological issues and concerns among sarcoma survivors: a mixed method study.

Purpose: We aimed to explore the health-related quality of life (HRQoL), psychological issues and concerns among sarcoma survivors in India and assess their satisfaction with nursing care. Methods: This study employed a sequential mixed-methods design, enrolling 100 sarcoma survivors from July to December 2021, with data collected using standardised questionnaires for HRQoL, depression, anxiety, stress, cognitive impairment and self-structured satisfaction with nursing care. Qualitative data were gathered through focused group discussions. Results: The mean global health score among sarcoma survivors was 79.48 ± 16.26. A significant number of survivors had symptoms of mild-to-moderate depression (30%), severe anxiety (12%), stress (16%) and mild cognitive impairment (5%). Significant mean rank differences were observed between anxiety and financial difficulty (p < 0.05), emotional functioning (p < 0.001), cognitive functioning (p < 0.001), pain (<0.05), insomnia (p < 0.001), fatigue (p < 0.001), anorexia (p < 0.05) and nausea/vomiting (p < 0.001). Educational qualification had a significant association with depression and anxiety while family history of cancer emerged as a significant factor associated with anxiety and stress among survivors. Qualitative analysis revealed themes related to body image, societal discrimination, socio-economic impact, marriage concerns and fertility issues. Survivor satisfaction with nursing care was good. Conclusion: A substantial number of sarcoma survivors had an average HRQoL and experienced depression, anxiety and stress. Our study emphasizes the importance of holistic survivorship care, involving nurses in post-treatment support, and addressing societal discrimination and psychosocial concerns to enhance their quality of life. Implications for cancer survivors: Our study calls for a holistic approach to sarcoma survivor care and emphasizes the importance of personalised survivorship care plans led by nurses to address the diverse needs of sarcoma survivors in India. Such plans should encompass strategies for managing depression, anxiety and stress, along with addressing body image concerns and social support.

Developing "The Health After Cancer Podcast" to amplify cancer survivors' voices through digital storytelling.

BACKGROUND: Cancer survivors experience complex medical and psychosocial challenges after a cancer diagnosis, leading to unmet informational and emotional needs. There is a paucity of cancer survivorship educational resources co-created by survivors and medical professionals. OBJECTIVE: Our aim was to create an educational resource for cancer survivors, caregivers, and medical professionals that would leverage digital storytelling to address survivorship topics. PATIENT INVOLVEMENT: Our content and production team included cancer survivors, clinicians, educators, and design experts. All content was co-created by cancer survivors and medical experts. METHODS: We conducted an environmental scan of existing cancer survivorship educational resources in academic and public domains. Applying human-centered design principles, we incorporated patient perspectives through advisory board meetings and focus groups and identified a podcast as the preferred medium. We selected content and speakers, produced the podcast, and developed a corresponding website. RESULTS: Based on patient recommendations, podcast episodes address mental health, fear of cancer recurrence, relationships, parenting, relating to a new body, care transitions for adult survivors of childhood cancer, disclosing health information, and financial burden of cancer. Podcast guests were invited based on lived or learned experience in these domains. Thirteen guests (survivors, experts) and four hosts (two cancer survivors, two oncologists) co-created 15 podcast episodes. Podcast guests found the storytelling experience to be powerful and therapeutic. DISCUSSION: Digital storytelling is a scalable and accessible educational tool for communicating complex survivorship concepts that can amplify survivors' voices and increase awareness among survivors and clinicians. Co-creation of educational resources for cancer survivorship by survivors and professionals is a feasible and innovative educational strategy. PRACTICAL VALUE: A podcast created by and for cancer survivors in partnership with medical experts highlights opportunities for peer-to-peer digital storytelling to foster community among survivors and caregivers. FUNDING: Podcast production was supported by the Stanford Comprehensive Cancer Center.

Fear of Cancer Recurrence in Differentiated Thyroid Cancer Survivors: A Systematic Review.

Background: Despite excellent survival rates, health-related quality of life detriments are common in differentiated thyroid cancer survivors and can be driven by fear of cancer recurrence (FCR). This review aims to report the incidence of FCR in thyroid cancer survivors and synthesize evidence regarding contributing factors. An overview and appraisal of the range of tools used to measure FCR is presented. Methods: A systematic review of the English literature was performed. The search across six electronic databases generated 3414 studies. Two reviewers independently screened the citations and full-text articles, of which 31 were included. The data were extracted independently by two reviewers. Results: The incidence of FCR was reported in 27/31 studies and ranged from 15% to 91%. Direct comparisons regarding incidence and severity of FCR were not possible due to heterogeneity in cut-points used to define FCR. A total of eight validated tools were used to measure FCR across all studies, with five studies using self-developed nonvalidated items. There was minimal repetition of validated tools and no clear consensus as to a preferred survey tool. Factors influencing FCR were reported in 11 studies. There was minimal overlap of factors influencing FCR. Risk factors contributing to increased FCR reported in more than one study included young age and an upcoming clinical appointment. Male gender and higher education levels were reported in more than one article as protective. No literature evaluating interventions to address FCR in thyroid cancer survivors was found. Conclusion: FCR is common in thyroid cancer survivors, but significant heterogeneity in the current evidence base limits assessment of incidence, severity, or risk factors. There is a need to use validated tools to assess FCR in both research and clinical contexts. Reliable assessment of FCR may permit routine assessment of FCR in clinical practice and allow interventions to be prospectively evaluated to optimize the holistic well-being of thyroid cancer survivors.

Mobile Mindfulness Meditation for Cancer-Related Anxiety and Neuropathy: Protocol for a Randomized Controlled Trial.

BACKGROUND: Anxiety- and cancer-related neuropathy are two persistent effects related to treatment for cancer. Mindfulness meditation has been used with substantial impact as a nonpharmacologic intervention to mitigate side and late effects of treatment. Mobile apps are ubiquitous for most of the general population, yet have a particular relevance for cancer survivors, given that physical and geographic limitations can be present. OBJECTIVE: This study aims to describe an ongoing trial of the Mindfulness Coach mobile app for cancer survivors. METHODS: In this randomized waitlist controlled trial, cancer survivors experiencing anxiety- or cancer-related neuropathy (200 for neuropathy and 200 for anxiety) and who had finished primary cancer treatment were invited to participate. Data were collected at 3 time points regardless of randomization condition: baseline, 8 weeks, and 16 weeks. Both face-to-face and web-based recruitment strategies were used. The trial was opened for 2 separate primary outcomes (anxiety- or cancer-related neuropathy). The goal was not to compare these groups but to compare treatment and waitlist groups for each condition. In addition to evaluating the impact of mobile mindfulness on reported anxiety- or cancer-related neuropathy, other pain, fatigue, trauma, sleep, and satisfaction with the Mindfulness Coach app will also be assessed. RESULTS: Outcomes of the study are expected in early 2024. CONCLUSIONS: Mindfulness meditation has become widely practiced, and the use of mobile technology has become ubiquitous. Finding ways to deliver mindfulness meditation to people who have been treated for cancer allows for the intervention to be accessible to a larger number of survivors. The results of this intervention could have implications for further understanding the impact of mindfulness meditation on 2 persistent side and late effects of treatment of cancer, namely anxiety- and cancer-related neuropathy. TRIAL REGISTRATION: ClinicalTrials.gov NCT03581357; https://ClinicalTrials.gov/study/NCT03581357. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47745.

Long-term prescribed drug use in stage I-III rectal cancer patients in Sweden, with a focus on bowel-regulating drugs after surgical and oncological treatment.

PURPOSE: To describe long-term prescribed drug use after rectal cancer treatment. METHODS: We identified 12,871 rectal cancer patients without distant metastasis between 2005 and 2016 and 64,341 matched population comparators using CRCBaSe (a Swedish nationwide register linkage of colorectal cancer patients). Mean defined daily doses (DDDs) of drug dispensing during relapse-free follow-up were calculated by Anatomical Therapeutic Chemical drug categories. Incidence rate ratios (IRRs) and 95% confidence intervals (CIs) from negative binomial regression were used to compare drug dispensing between patients and comparators. RESULTS: The overall pattern of drug dispensing was similar among cancer survivors and comparators, although patients had higher mean DDDs of drugs regulating the digestive system. Excess dispensing of drugs for constipation (IRR, 3.35; 95% CI, 3.12-3.61), diarrhea (IRR, 6.43; 95% CI, 5.72-7.22), functional gastrointestinal disorders (IRR, 3.78; 95% CI, 3.15-4.54), and vitamin and mineral supplements (IRR, 1.37; 95% CI, 1.24-1.50) was observed up to 10 years after surgery. Treatment with Hartmann's procedure was associated with higher dispensing rates of digestive drugs compared to surgery with anterior resection and abdominoperineal resection but the association was attributed to higher use of diabetic drugs. Additionally, excess digestive drug dispensing was associated with more advanced cancer stage but not with (chemo)radiotherapy treatment. CONCLUSIONS: Excess drug use after rectal cancer is primarily driven by bowel-regulating drugs and is not modified by surgical or oncological treatment. IMPLICATIONS FOR CANCER SURVIVORS: The excess use of bowel-regulating drugs after rectal cancer indicated long-standing postsurgical gastrointestinal morbidity and need of prophylaxis. Reassuringly, no excess use of other drug classes was noted long term.

Supporting Life Adjustment in Patients With Lung Cancer Through a Comprehensive Care Program: Protocol for a Controlled Before-and-After Trial.

BACKGROUND: Lung cancer diagnosis affects an individual's quality of life as well as physical and emotional functioning. Information on survivorship care tends to be introduced at the end of treatment, but early intervention may affect posttreatment adjustment. However, to the best of our knowledge, no study has explored the effect of early information intervention on the return to work, family, and societal roles of lung cancer survivors. OBJECTIVE: We report the study protocol of a comprehensive care prehabilitation intervention designed to facilitate lung cancer survivors' psychological adjustment after treatment. METHODS: A comprehensive care program was developed based on a literature review and a qualitative study of patients with lung cancer and health professionals. The Lung Cancer Comprehensive Care Program consists of educational videos and follow-up visits by a family medicine physician. To prevent contamination, the control group received routine education, whereas the intervention group received routine care and intervention. Both groups completed questionnaires before surgery (T0) and at 1-month (T1), 6-month (T2), and 1-year (T3) follow-up visits after surgery. The primary outcome was survivors' psychological adjustment to cancer 6 months after pulmonary resection. RESULTS: The historical control group (n=441) was recruited from September 8, 2021, to April 20, 2022, and the intervention group (n=350) was recruited from April 22, 2022, to October 17, 2022. All statistical analyses will be performed upon completion of the study. CONCLUSIONS: This study examined the effectiveness of an intervention that provided general and tailored informational support to lung cancer survivors, ranging from before to the end of treatment. TRIAL REGISTRATION: ClinicalTrials.gov NCT05078918; https://clinicaltrials.gov/ct2/show/NCT05078918. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54707.

A Digital Intervention to Improve Skin Self-Examination Among Survivors of Melanoma: Protocol for a Type-1 Hybrid Effectiveness-Implementation Randomized Trial.

BACKGROUND: Although melanoma survival rates have improved in recent years, survivors remain at risk of recurrence, second primary cancers, and keratinocyte carcinomas. The National Comprehensive Cancer Network recommends skin examinations by a physician every 3 to 12 months. Regular thorough skin self-examinations (SSEs) are recommended for survivors of melanoma to promote the detection of earlier-stage, thinner melanomas, which are associated with improved survival and lower treatment costs. Despite their importance, less than a quarter of survivors of melanoma engage in SSEs. OBJECTIVE: Previously, our team developed and evaluated a web-based, fully automated intervention called mySmartSkin (MSS) that successfully improved SSE among survivors of melanoma. Enhancements were proposed to improve engagement with and outcomes of MSS. The purpose of this paper is to describe the rationale and methodology for a type-1 hybrid effectiveness-implementation randomized trial evaluating the enhanced MSS versus control and exploring implementation outcomes and contextual factors. METHODS: This study will recruit from state cancer registries and social media 300 individuals diagnosed with cutaneous malignant melanoma between 3 months and 5 years after surgery who are currently cancer free. Participants will be randomly assigned to either enhanced MSS or a noninteractive educational web page. Surveys will be collected from both arms at baseline and at 3, 6, 12, and 18 months to assess measures of intervention engagement, barriers, self-efficacy, habit, and SSE. The primary outcome is thorough SSE. The secondary outcomes are the diagnosis of new or recurrent melanomas and sun protection practices. RESULTS: Multilevel modeling will be used to examine whether there are significant differences in survivor outcomes between MSS and the noninteractive web page over time. Mixed methods will evaluate reach, adoption, implementation (including costs), and potential for maintenance of MSS, as well as contextual factors relevant to those outcomes and future scale-up. CONCLUSIONS: This trial has the potential to improve outcomes in survivors of melanoma. If MSS is effective, the results could guide its implementation in oncology care and nonprofit organizations focused on skin cancers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/52689.

Support for Chronic Pain Management for Breast Cancer Survivors Through Novel Digital Health Ecosystems: Pilot Usability Study of the PainRELife Mobile App.

BACKGROUND: Chronic pain is one of the most common and critical long-term effects of breast cancer. Digital health technologies enhance the management of chronic pain by monitoring physical and psychological health status and supporting pain self-management and patient treatment decisions throughout the clinical pathway. OBJECTIVE: This pilot study aims to evaluate patients' experiences, including usability, with a novel digital integrated health ecosystem for chronic pain named PainRELife. The sample included patients with breast cancer during survivorship. The PainRELife ecosystem comprises a cloud technology platform interconnected with electronic health records and patients' devices to gather integrated health care data. METHODS: We enrolled 25 patients with breast cancer (mean age 47.12 years) experiencing pain. They were instructed to use the PainRELife mobile app for 3 months consecutively. The Mobile Application Rating Scale (MARS) was used to evaluate usability. Furthermore, pain self-efficacy and participation in treatment decisions were evaluated. The study received ethical approval (R1597/21-IEO 1701) from the Ethical Committee of the European Institute of Oncology. RESULTS: The MARS subscale scores were medium to high (range: 3.31-4.18), and the total app quality score was 3.90. Patients with breast cancer reported reduced pain intensity at 3 months, from a mean of 5 at T0 to a mean of 3.72 at T2 (P=.04). The total number of times the app was accessed was positively correlated with pain intensity at 3 months (P=.03). The engagement (P=.03), information (P=.04), and subjective quality (P=.007) subscales were positively correlated with shared decision-making. Furthermore, participants with a lower pain self-efficacy at T2 (mean 40.83) used the mobile app more than participants with a higher pain self-efficacy (mean 48.46; P=.057). CONCLUSIONS: The data collected in this study highlight that digital health technologies, when developed using a patient-driven approach, might be valuable tools for increasing participation in clinical care by patients with breast cancer, permitting them to achieve a series of key clinical outcomes and improving quality of life. Digital integrated health ecosystems might be important tools for improving ongoing monitoring of physical status, psychological burden, and socioeconomic issues during the cancer survivorship trajectory. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/41216.

Menopausal Symptoms and Utian Quality of Life Scale Following a Breast Cancer Diagnosis and Its Impact on Endocrine Adherence.

Introduction Standard treatment for oestrogen-positive breast cancers involves a minimum of five years of adjuvant endocrine treatment with a significant improvement in survival. However, the side effects of endocrine treatments are often underestimated. We aimed to identify the frequency of side effects, adherence to treatment, and impact on the quality of life of breast cancer survivors. Methods All patients attending holistic needs assessment and health and wellbeing events with a clinical nurse specialist between March and October 2023 were given a menopause symptom proforma and Utian menopausal quality of life scale questionnaire. Results A total of 99/150 (66%) patients attending a health needs assessment with a clinical nurse specialist following a diagnosis of breast cancer returned forms. The mean age of respondents was 56.7 years, with a mean 2.5-year duration since diagnosis. Thirty-seven percent of respondents were premenopausal at diagnosis, and 63% were postmenopausal. Five percent stopped treatment early due to menopausal symptoms, and 2.2% changed endocrine treatment. Overall, the mean menopausal quality of life score was -0.454 (p=0.0052). Within the premenopausal cohort, 84% reported hot flushes, 81% a low-sex drive, 73% night sweats, 89% memory problems, 89% fatigue, and 76% joint aches. This group scored -0.20 SD on the quality of life scale. The postmenopausal group reported a 71% incidence of hot flushes, 79% both poor sleep and joint pain, 60% breast pain, and 86% fatigue. They demonstrated a mean of -0.58 SD on the quality of life scale. The failure to adhere to endocrine treatment was reported by 6% of respondents, who cited side effects as the reason for non-compliance. Conclusion In conclusion, there is a significant increase in menopausal symptoms following treatment for breast cancer, which is negatively impacting well-being, quality of life, and endocrine adherence.

Advancing survivorship at a comprehensive cancer center: integrating clinical care, education and research initiatives at Northwestern Medicine and the Robert H. Lurie Comprehensive Cancer Center.

The unprecedented and growing number of cancer survivors requires comprehensive quality care that includes cancer surveillance, symptom management, and health promotion to reduce morbidity and mortality and improve quality of life. However, coordinated and sustainable survivorship care has been challenged by barriers at multiple levels. We outline the survivorship programs at Northwestern Medicine and the Robert H. Lurie Comprehensive Cancer Center that have evolved over two decades. Our current survivorship clinics comprise STAR (Survivors Taking Action and Responsibility) for adult survivors of childhood cancers; Adult Specialty Survivorship for survivors of breast, colorectal and testicular cancers, lymphomas, and leukemias; and Gynecologic Oncology Survivorship. Care provision models align with general, disease/treatment-specific, and integrated survivorship models, respectively. Reimbursement for survivorship services has been bolstered by institutional budget allocations. We have standardized survivor education, counseling, and referrals through electronic health record (EHR)-integrated survivorship care plan (SCP) templates that incorporate partial auto-population. We developed EHR-integrated data collection tools (e.g., dashboards; SmartForm, and registry) to facilitate data analytics, personalized patient referrals, and reports to the Commission on Cancer (CoC). We report to the CoC on SCP delivery, dietitian encounters, and DEXA scans. For the last decade, our Cancer Survivorship Institute has aligned the efforts of clinicians, researchers, and educators. The institute promotes evidence-based care, high-impact research, and state-of-the-science educational programs for professionals, survivors, and the community. Future plans include expansion of clinical services and funding for applied research centered on the unique needs of post-treatment cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: The survivorship programs at Northwestern Medicine and the Robert H. Lurie Comprehensive Cancer Center underscore the imperative for comprehensive, coordinated, and sustainable survivorship care to address the needs of increasing numbers of cancer survivors, with a focus on evidence-based clinical practices, associated research, and educational initiatives.

History and current status of the survivorship care program at the University of California, Los Angeles Jonsson Comprehensive Cancer Center (UCLA JCCC).

As one of the first comprehensive cancer centers to receive a designation from the National Cancer Institute, the Jonsson Comprehensive Cancer Center at UCLA Health has served as a leader in survivorship research for three decades. A clinical survivorship program for childhood cancer survivors was established in the early 2000s as this became a standard of care in pediatric oncology. However, it was not until receipt of external funding and the establishment of a Survivorship Center of Excellence in 2006 that clinical services were expanded to include adult cancer survivors, as well as survivorship care delivery research in the community and at affiliated clinical sites. When this funding ended, there was limited institutional support for expansion of the program, and so the clinical programs did not develop further. Recently, there has been renewed interest in obtaining Commission on Cancer accreditation, and this has prompted an institutional assessment of survivorship care to inform future activities for system-wide program development. As oncology care expands throughout a large regional health system network, the future survivorship program will need to serve as a common resource for the entire health system by providing a repository of specialized services and resources as well as standard processes and pathways for a cohesive approach to care. IMPLICATIONS FOR CANCER SURVIVORS: There are many challenges to development and sustainment of cancer survivorship programs, even in NCI-designated comprehensive cancers. As the delivery of cancer care services expands and becomes more integrated in large health care systems, innovative strategies are needed to ensure delivery of tailored care to cancer survivors through acute treatment and beyond.

The Cancer Screening and Survivorship Program at Roswell Park Comprehensive Cancer Center.

Roswell Park Comprehensive Cancer Center (Roswell) is the only NCI-designated cancer center in New York State outside of the New York City metropolitan area. The Cancer Screening and Survivorship Program combines cancer screening services with survivorship care in a freestanding centralized clinic with providers also dispersed to see survivors in other clinical areas. The aims of the program are to provide comprehensive, patient-centered care to cancer survivors and their families and caregivers by addressing symptoms, supporting wellness, prevention and quality of life, and engaging community primary care providers in a shared-care model. The clinic is led by an onco-generalist, defined as an internal medicine trained physician serving cancer survivor's medical issues from all cancer disease sites. Roswell's Cancer Screening and Survivorship Program growth and development is guided by ongoing research related to patient needs and barriers to care, overall quality of life, health promotion and prevention, as well as education and training to build a more robust cancer survivorship workforce. The cancer center leadership has identified the expansion of cancer survivorship paired with community outreach and engagement, PCP outreach and education, and comprehensive cancer screening services as one of the key strategic areas of growth over the next decade. With the investment in our long-term strategic plan, we expect to continue to grow and serve a broader community of cancer survivors and further our research related to the structure and outcomes of our programmatic activities. IMPLICATIONS FOR CANCER SURVIVORS: This program provides robust whole-person care for cancer survivors and provides an example of successful infrastructure for cancer survivorship.

Cancer survivorship programs at the Dana-Farber Cancer Institute.

PURPOSE: We sought to present the current status of survivorship programs at Dana-Farber Cancer Institute which include the David B. Perini, Jr. Quality of Life Clinic for survivors of childhood cancer, Stop and Shop Neuro-Oncology Outcomes Clinic for pediatric brain tumor survivors, and Adult Survivorship Program for adult cancer survivors including those diagnosed as adults (age 18 years and older) and adult survivors of childhood cancer, in an effort to share best practices as well as challenges. METHODS: Description of programs and discussion. RESULTS: Our institutional programs are detailed regarding their history and the multidisciplinary approach and both consultative and long-term care delivery models for pediatric and adult cancer survivors, with the goal of meeting the spectrum of survivorship care needs, from diagnosis and management of long-term effects of cancer-directed therapy and surveillance for subsequent cancer, to healthy lifestyle promotion and psychosocial support. Program investigators conduct research to understand the risks and unmet needs of cancer survivors, and to develop and test interventions to improve care delivery and medical and psychosocial outcomes. There are also educational initiatives detailed. CONCLUSIONS: Survivorship programs at Dana-Farber are designed to optimize care and outcomes for cancer survivors including conducting quality improvement initiatives and research to further understand and meet the clinical needs of the large, heterogenous, and growing population cancer survivors into the future. IMPLICATIONS FOR CANCER SURVIVORS: Programs like ours as well as those ongoing and planned aim to improve the comprehensive care of diverse cancer survivors.

Initiating and Maintaining Complete Decongestive Therapy Self-Management of Lymphedema Among Breast Cancer Survivors: Descriptive Qualitative Study.

PURPOSE: This study aimed to identify determinants that promote the initiation and maintenance of complete decongestive therapy (CDT) as well as effective strategies for mitigating barriers to self-management of lymphedema among breast cancer survivors. METHODS: A descriptive and qualitative design was used. In-depth interviews were conducted with 13 breast cancer survivors who were managing breast cancer-related lymphedema. Interviews were transcribed verbatim. An iterative descriptive data analysis method was employed to examine the data, compare codes, challenge interpretations, and inductively identify themes. RESULTS: A realization that lymphedema requires daily self-management was the primary determinant leading breast cancer survivors to initiate CDT self-management. The determinants for maintaining daily CDT self-management included the perceived effectiveness of CDT, being willing to assume accountability, and perceived efficacy to undertake CDT. Developing strategies to integrate CDT regimens into daily life is key to maintaining CDT self-management of lymphedema. Three core concepts mediate initiation and maintenance of CDT self-management: understanding lymphedema as a chronic condition that can be managed with CDT self-management, being worried about lymphedema exacerbation, and having support from patient peers and family. CONCLUSIONS: Interventions should be tailored to promote the initiation and maintenance of CDT self-management. While clinicians provided knowledge-based and clinical skills-based information, patient peers provided daily life examples, and real-life implementation strategies for CDT self-management. Ongoing patient-provider and patient-peer communication functioned as effective support for maintaining CDT self-management. Reliable and realistic methods of symptom self-assessment are important for maintaining CDT at home.

Fostering resilience in adolescence and young adulthood: Considerations for evidence-based, patient-centered oncology care.

Adolescence and young adulthood are times of growth and change. For adolescents and young adults (AYAs) who are diagnosed with cancer, the demands of illness may compound normal developmental challenges and adversely affect physical, emotional, and social health. Nevertheless, AYAs have a tremendous capacity for psychosocial adaptation and resilience. Informed by the Transactional Model of Stress and Coping, observational studies in AYA oncology suggest consistent individual, social, and existential resources that may promote resilience. To date, few interventions have been designed to examine whether resilience can be taught and whether doing so affects patient-centered outcomes. Findings point to the potential value of multicomponent programs that include various skills-building strategies, such as stress management, mindfulness, gratitude, and positive reappraisal coping, among others. New research directions include the need to evaluate delivery strategies to enhance participant adherence and retention (e.g., eHealth modalities, optimization studies) and to examine program effectiveness in community-based oncology practices (e.g., less resource-rich settings in which most AYAs receive care). Ultimately, this scholarship may inform, refine, and strengthen intervention science in resilience more broadly.

Experiences of young adults affected by cancer within an 8-week yoga intervention delivered by videoconference: a qualitative interview study.

BACKGROUND: Yoga may reduce negative cancer- and treatment-related effects and help improve a range of outcomes, including flexibility, mindfulness, and quality of life among adults affected by cancer. Yet there is little evidence for the role of yoga among young adults (18-39 years) affected by cancer. PURPOSE: The purpose of this study was to explore the experiences of young adults affected by cancer in an 8-week yoga intervention delivered by videoconference. METHODS: Young adults who were diagnosed with cancer between the ages of 18 and 39 years, at any stage of the cancer trajectory, who were living in Canada, and who completed an 8-week yoga intervention were approached to complete a semi-structured interview. A social constructivist paradigm was adopted. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis. RESULTS: Twenty-eight young adults (Mean age = 34.67 ± 5.11 years; n = 25 female) with varied cancer diagnoses participated. Participants' perspectives were represented across 6 themes: (1) I was juggling a number of challenges and changes throughout the yoga intervention; (2) I noticed some improvements in my mental and physical health; (3) I made time to discover new strategies to take care of myself; (4) I was able to see what my body is capable of; (5) I was held accountable and I appreciated that, and; (6) I was able to be around similar others in a safe (virtual) space. CONCLUSIONS: Findings suggest that an 8-week yoga intervention may offer some benefits for young adults affected by cancer. Self-care, self-compassion, mindfulness, feelings of physical competence, establishing a routine, and being around similar others were viewed as important components of the intervention and may have contributed to the benefits experienced. Findings underscore the potential utility of yoga as a supportive care intervention for young adults affected by cancer.

Young adults affected by cancer described changed physical and mental health after an 8-week yoga intervention delivered by videoconference.Taking time for oneself, practicing self-compassion and mindfulness, enhanced feelings of physical competence, and establishing a routine were important elements of the intervention.Young adults appreciated being around similar others (i.e., other young adults affected by cancer) and felt connected in this videoconference-based intervention.