[Emotional and physical aftereffects of cancer Utility and impact of a rehabilitation program]. / Séquelles émotionnelles et physiques du cancer. Utilité et impact d'un programme de réadaptation.

An increasing number of people are surviving cancer in Switzerland : 163,450 people were still alive in 2006 after a cancer diagnosis less than ten years prior, compared to 210,350 in 2016. However, most have to cope with debilitating emotional and physical aftereffects. A new 12-week rehabilitation program aims to restore patients' abilities. It consists of group-led therapies: adapted physical activity, psycho-oncology, dietetics, management of cognitive disorders, and integrative medicine. The first 116 patients who benefited from the program reported a general reduction in symptoms at the end of the program, an improvement that lasts even after 9 months, although fatigue and mood become concerning again. Some express a desire for post-rehabilitation follow-up.

De plus en plus de personnes survivent au cancer en Suisse : 163 450 personnes étaient encore en vie après un diagnostic de cancer remontant à moins de dix ans en 2006, contre 210 350 en 2016. La plupart doivent toutefois faire face à des séquelles émotionnelles et physiques invalidantes. Un nouveau programme de réadaptation de 12 semaines vise à restaurer les capacités des patients. Il est composé de thérapies menées en groupe : activité physique adaptée, psycho-oncologie, diététique, gestion des troubles cognitifs et médecine intégrative. Les 116 premiers patients bénéficiaires expriment une diminution générale des symptômes à l'issue du programme, une amélioration qui perdure après 9 mois, même si la fatigue et le moral redeviennent préoccupants. Certains expriment le souhait d'un suivi post-réadaptation.

Implementation of a Mindful Walking Intervention in Breast Cancer Patients After Their Primary Oncologic Treatment: Results of a Qualitative Study Within a Randomized Controlled Trial.

BACKGROUND: Breast cancer survivors often suffer from diagnosis- and therapy-related long-term side effects, such as cancer related fatigue, restricted stress resilience and quality of life. Walking as a physical activity and mindfulness practice have been shown to be helpful in studies. The aim of this study was to compare the individual experiences and subjectively perceived effects of walking in combination with mindfulness practice with moderate walking alone in breast cancer patients. This paper focuses on the qualitative results of a mixed-methods pilot study. METHODS: Breast cancer patients who had finished their primary oncologic treatment at least 6 months ago were randomized to an 8-week group intervention program of either mindful walking or moderate walking. Within the qualitative study part, semi-structured focus group interviews (2 interviews per study arm) were conducted and analyzed using a qualitative content analysis approach. Audio recorded interviews were transcribed verbatim and pseudonymized. The subsequent data analysis was performed by using MAXQDA®. RESULTS: A total of 51 women (mean age 55.8 [SD 10.9] years) were included in the RCT, among these 20 (mean age 56.7 [SD 12.0] years) participated in the focus group interviews (n = 11 patients of the mindful walking group; n = 9 patients of the walking group). Breast cancer patients in both groups described different effects in the complex areas of self-efficacy, coping, body awareness and self-reflection. While mindful walking primarily promoted body awareness and inner strength by mindfulness in breast cancer patients, moderate walking promoted self-efficacy by a confidence of their body and an easily integrated and accepted way of physical activity. CONCLUSIONS: Study interventions and the study setting triggered processes and reflections on one's own health and situation. However, mindful walking and moderate walking seem to address different resources. This important knowledge may help oncologists and other therapists to assess what type of interventions can best meet the needs and requirements of individual patients. TRIAL REGISTRATION: DKRS00011521; prospectively registered 21.12.2016; https://drks.de/search/de/trial/DRKS00011521.

Impact of Short-Term Creatine Supplementation on Muscular Performance among Breast Cancer Survivors.

Breast cancer (BC) is one of the most common cancers in the United States. Advances in detection and treatment have resulted in an increased survival rate, meaning an increasing population experiencing declines in muscle mass and strength. Creatine supplementation has consistently demonstrated improvements in strength and muscle performance in older adults, though these findings have not been extended to cancer populations. PURPOSE: The purpose of this study was to investigate the effects of short-term creatine supplementation on muscular performance in BC survivors. METHODS: Using a double-blind, placebo-controlled, randomized design, 19 female BC survivors (mean ± SD age = 57.63 ± 10.77 years) were assigned to creatine (SUPP) (n = 9) or dextrose placebo (PLA) (n = 10) groups. The participants completed two familiarization sessions, then two test sessions, each separated by 7 days, where the participants supplemented with 5 g of SUPP or PLA 4 times/day between sessions. The testing sessions included sit-to-stand power, isometric/isokinetic peak torque, and upper/lower body strength via 10 repetition maximum (10RM) tests. The interaction between supplement (SUPP vs. PLA) and time (Pre vs. Post) was examined using a group × time ANOVA and effect sizes. RESULTS: No significant effects were observed for sit-to-stand power (p = 0.471; ηp2 = 0.031), peak torque at 60°/second (p = 0.533; ηp2 = 0.023), peak torque at 120°/second (p = 0.944; ηp2 < 0.001), isometric peak torque (p = 0.905; ηp2 < 0.001), 10RM chest press (p = 0.407; ηp2 = 0.041), and 10RM leg extension (p = 0.932; ηp2 < 0.001). However, a large effect size for time occurred for the 10RM chest press (ηp2 = 0.531) and leg extension (ηp2 = 0.422). CONCLUSION: Seven days of creatine supplementation does not influence muscular performance among BC survivors.

The prognosis and treatment of newly diagnosed bone metastasis of head and neck squamous cell cancer: an analysis of racial disparity / El pronóstico y el tratamiento de las metástasis óseas recién diagnosticadas de cáncer de células escamosas de cabeza y cuello: un análisis de la disparidad racial

Objective: There is a lack of research investigating racial disparity in newly diagnosed head and neck squamous cell carcinoma with isolated bone metastases (HNSCC-BM). This study aims to investigate the clinical characteristics and prognostic factors in HNSCC-BM patients from different racial backgrounds to aid clinical decision making and management. Methods: We retrieved data from the Surveillance, Epidemiology, and End Results (SEER) database for 345 cases of HNSCC-BM that were diagnosed between 2010 and 2017. Survival was compared using univariate and multivariate Cox proportional hazards models, Kaplan–Meier analysis, and log-rank tests. We also used propensity score matching to adjust for confounders. Results: In white patients, those who were over 40 years of age had a significantly shorter survival (HR, 4.49; 95% CI 1.03–19.56; P < 0.05). Female black patients were found to survive longer compared to male patients (HR, 0.34; 95% CI 0.15–0.76; P < 0.01). Single (never married) Asians had shorter survival than married Asians (HR, 4.68; 95% CI 1.34–16.41; P < 0.05). In all three racial groups, patients who received radiotherapy in addition to chemotherapy did not survive longer than those receiving chemotherapy (P > 0.05). In Asian patients, those who underwent surgery at the primary site combined with chemoradiotherapy had significantly better survival outcomes than those who received chemoradiotherapy (HR: 0.10, 95% CI 0.01–0.88; P = 0.01). Conclusion: Prognostic factors differ between HNSCC-BM patients from different racial backgrounds.(AU)

Risk of Subsequent Primary Cancers in Thyroid Cancer Survivors according to the Dose of Levothyroxine: A Nationwide Cohort Study.

BACKGRUOUND: Current research has not investigated the effect of thyroid-stimulating hormone suppression therapy with levothyroxine on the risk for developing subsequent primary cancers (SPCs). This study aimed to investigate the association between levothyroxine dosage and the risk for SPCs in thyroid cancer patients. METHODS: We conducted a nationwide population-based retrospective cohort study form Korean National Health Insurance database. This cohort included 342,920 thyroid cancer patients between 2004 and 2018. Patients were divided into the non-levothyroxine and the levothyroxine groups, the latter consisting of four dosage subgroups according to quartiles. Cox proportional hazard models were performed to evaluate the risk for SPCs by adjusting for variables including cumulative doses of radioactive iodine (RAI) therapy. RESULTS: A total of 17,410 SPC cases were observed over a median 7.3 years of follow-up. The high-dose levothyroxine subgroups (Q3 and Q4) had a higher risk for SPC (adjusted hazard ratio [HR], 1.14 and 1.27; 95% confidence interval [CI], 1.05-1.24 and 1.17- 1.37; respectively) compared to the non-levothyroxine group. In particular, the adjusted HR of stomach (1.31), colorectal (1.60), liver and biliary tract (1.95), and pancreatic (2.48) cancers were increased in the Q4 subgroup. We consistently observed a positive association between high levothyroxine dosage per body weight and risk of SPCs, even after adjusting for various confounding variables. Moreover, similar results were identified in the stratified analyses according to thyroidectomy type and RAI therapy, as well as in a subgroup analysis of patients with good adherence. CONCLUSION: High-dose levothyroxine use was associated with increased risk of SPCs among thyroid cancer patients regardless of RAI therapy.

A qualitative analysis of algorithm-based decision support usability testing for symptom management across the trajectory of cancer care: one size does not fit all.

BACKGROUND: Adults with cancer experience symptoms that change across the disease trajectory. Due to the distress and cost associated with uncontrolled symptoms, improving symptom management is an important component of quality cancer care. Clinical decision support (CDS) is a promising strategy to integrate clinical practice guideline (CPG)-based symptom management recommendations at the point of care. METHODS: The objectives of this project were to develop and evaluate the usability of two symptom management algorithms (constipation and fatigue) across the trajectory of cancer care in patients with active disease treated in comprehensive or community cancer care settings to surveillance of cancer survivors in primary care practices. A modified ADAPTE process was used to develop algorithms based on national CPGs. Usability testing involved semi-structured interviews with clinicians from varied care settings, including comprehensive and community cancer centers, and primary care. The transcripts were analyzed with MAXQDA using Braun and Clarke's thematic analysis method. A cross tabs analysis was also performed to assess the prevalence of themes and subthemes by cancer care setting. RESULTS: A total of 17 clinicians (physicians, nurse practitioners, and physician assistants) were interviewed for usability testing. Three main themes emerged: (1) Algorithms as useful, (2) Symptom management differences, and (3) Different target end-users. The cross-tabs analysis demonstrated differences among care trajectories and settings that originated in the Symptom management differences theme. The sub-themes of "Differences between diseases" and "Differences between care trajectories" originated from participants working in a comprehensive cancer center, which tends to be disease-specific locations for patients on active treatment. Meanwhile, participants from primary care identified the sub-theme of "Differences in settings," indicating that symptom management strategies are care setting specific. CONCLUSIONS: While CDS can help promote evidence-based symptom management, systems providing care recommendations need to be specifically developed to fit patient characteristics and clinical context. Findings suggest that one set of algorithms will not be applicable throughout the entire cancer trajectory. Unique CDS for symptom management will be needed for patients who are cancer survivors being followed in primary care settings.

What factors contribute to cancer survivors' self-management skills? A cross-sectional observational study.

PURPOSE: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors' self-management skills. METHODS: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. RESULTS: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants' recognition and management, and therapy adherence (PIH-MSA). CONCLUSIONS: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.

Health-related quality of life, needs, and concerns among cancer survivors referred to rehabilitation in primary healthcare setting.

BACKGROUND AND PURPOSE: There is a growing need for rehabilitation services beyond hospitals. This study aims to describe challenges faced by cancer survivors (CSs) referred for rehabilitation in primary healthcare, employing standardized scales measuring health-related quality of life (HRQOL) and open-ended questions. Furthermore, the study explores the applicability of patient-reported outcomes (PROs) in comprehensively understanding challenges encountered by CSs. MATERIAL AND METHODS: This cross-sectional study involves CSs referred for cancer rehabilitation in a primary healthcare setting, including those participating in PROs as a part of routine practice. HRQOL was assessed using the Functional Assessment of Cancer Therapy-General (FACT-G). The International Classification of Functioning, Disability and Health (ICF) framed the analysis of responses to open-ended questions 'what concerns you the most?' and 'what matters to you?'  Results: FACT-G showed the lowest scores for functional well-being (14.4) and emotional well-being (16.6), with higher scores for physical well-being (18.9) and social/family well-being (21.1). Responses to open-ended questions unveiled worries about everyday life and how cancer will impact family well-being presently and in the future. Furthermore, CSs reported a need to maintain normality and proactively address the challenges posed by the disease. INTERPRETATION: CSs referred for rehabilitation in primary healthcare experience comprehensive challenges necessitating a holistic rehabilitation approach. This includes interventions supporting CSs in dealing with uncertainty, regaining a sense of control, and addressing family well-being concerns. When using PROs for need assessment, the combination of validated HRQOL scales and open-ended questions is crucial for an in-depth understanding of CSs' challenges.

Effect of exercise based interventions on sleep and circadian rhythm in cancer survivors-a systematic review and meta-analysis.

Background: Disrupted circadian rhythm commonly reported in cancer survivors is closely associated with cancer related fatigue, sleep disturbances and compromised quality of life. As more cancer survivors request non-pharmacological treatment strategies for the management of their chronic sleep-related symptoms, there is a need for meta-analyses of various interventions such as exercise on sleep and circadian rhythm disturbances. Methods: A search for RCT's was conducted in April 2020 and updated in July 2023 using relevant keywords for cancer, sleep, circadian rhythm and exercise interventions on PubMed, Scopus, Web of Science, PEDro and CINAHL. Results: Thirty-six studies were included for qualitative analysis and 26, for meta-analysis. Thirty-five studies analyzed sleep outcomes, while five analyzed circadian rhythm. RCT's studying the effect of aerobic exercise, resistance exercise, combined aerobic and resistance exercise, physical activity, yoga, or tai chi were included. Meta-analysis results showed significant exercise-related improvements on sleep quality assessed by Pittsburgh Sleep Quality index (PSQI) (SMD = -0.50 [-0.87, -0.13], p = 0.008), wake after sleep onset (WASO) (SMD = -0.29 [-0.53, -0.05], p = 0.02) and circadian rhythm, assessed by salivary cortisol levels (MD = -0.09 (95% CI [-0.13 to -0.06]) mg/dL, p < 0.001). Results of the meta-analysis indicated that exercise had no significant effect on sleep efficiency, sleep onset latency, total sleep time and circadian rhythm assessed by accelerometry values. Conclusion: While some sleep and circadian rhythm outcomes (PSQI, WASO and salivary cortisol) exhibited significant improvements, it is still somewhat unclear what exercise prescriptions would optimize different sleep and circadian rhythm outcomes across a variety of groups of cancer survivors. Implication: As exercise does not exacerbate cancer-related circadian rhythm and sleep disturbances, and may actually produce some significant benefits, this meta-analysis provides further evidence for cancer survivors to perform regular exercise.

Associations Between Health Behaviors, Gastrointestinal Symptoms, and Gut Microbiota in a Cross-Sectional Sample of Cancer Survivors: Secondary Analysis from the Chemo-Gut Study.

BACKGROUND: Health behaviors, such as diet and exercise, are actions individuals take that can potentially impact gastrointestinal (GI) symptoms and the gut microbiota. Little is known about how health behaviors impact GI symptoms and the gut microbiota after anti-cancer therapies. METHODS: This is a secondary analysis of a cross-sectional study that investigated relationships between GI symptoms, gut microbiota, and patient-reported outcomes in adult cancer survivors. Gut microbiota was assessed from stool samples using 16 S rRNA gene sequencing. GI symptoms and health behaviors were measured via self-report. Descriptive statistics, multiple regression, and correlation analyses are reported. RESULTS: A total of 334 cancer survivors participated, and a subsample of 17 provided stool samples. Most survivors rated their diet as moderately healthy (55.7%) and reported engaging in low intensity exercise (53.9%) for ≤5 h/week (69.1%). Antibiotic use was associated with more belly pain, constipation, and diarrhea (P < .05). Survivors consuming a healthier diet had fewer symptoms of belly pain (P = .03), gas/bloating (P = .01), while higher protein consumption was associated with less belly pain (P = .03). Better diet health was positively correlated with Lachnospiraceae abundance, and negatively with Bacteroides abundance (P < .05). Greater exercise frequency positively correlated with abundance of Lachnospiraceae, Faecalibacterium, Bacteroides, Anaerostipes, Alistipes, and Subdoligranulum (P < .05). CONCLUSION: Results provide evidence for associations between antibiotic use, probiotic use, dietary health behaviors, and GI symptoms. Diet and exercise behaviors are related to certain types of bacteria, but the direction of causality is unknown. Dietary-based interventions may be optimally suited to address survivors' GI symptoms by influencing the gut microbiota. Larger trials are needed.

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.

The Effect of Multidimensional Spiritual Psychotherapy on the Quality of Life of Bone Cancer Survivors with a History of Lower Extremity Amputation.

INTRODUCTION: This study aimed to investigate the effect of multidimensional spiritual psychotherapy on anxiety, depression, and attitude towards self and god in bone cancer patients after amputation. METHOD: Forty one cancer patients with a history of Below-The-Knee amputation were recruited in this quasi-experimental study. The design included pre-and post-tests in experimental and control  groups. The experimental group received 15 sessions of multidimensional spiritual psychotherapy. Cattell Anxiety Inventory (CAI), Beck Anxiety Inventory (BAI), Beck's Depression Inventory (BDI), Religious Adherence Questionnaire (RAQ), and Self-concept-God concept questionnaire were administered for data collection. RESULTS: There was a significant difference between the control and experimental groups in terms of anxiety (P=0.0001), Depression (P=0.0001), God-image (P=0.035, F(1,38)=4.79), God-concept (P=0.006, F(1,38)=8.58), self-image (P=0.0001, F(1,38)=98.62), and self-concept (P=0.0001, F(1,38)=120.56), psychological evolution (P=0.0001, F(1,38)=19.36), and religious adherence (P=0.0001, F(1,38)=84.21). CONCLUSION: The results of the study indicated that the emphasis on spirituality and the implementation of spiritual care could improve the cancer amputated patients' well-being.

"Somebody That can Meet you on Your Level:" Cancer Survivors' Perspectives on the Role of Indigenous Patient Navigators in Cancer Care.

BACKGROUND: Cancer incidence has increased for First Nations and Métis Peoples in Canada over recent years. Despite a growing cancer burden, there remain challenges to accessing culturally appropriate and quality care in Saskatchewan. OBJECTIVE: The study aimed to explore, from cancer survivors' perspectives, the potential of Indigenous patient navigators to enhance the healthcare experiences of First Nations and Métis cancer survivors in Saskatchewan. METHODS: We conducted semi-structured interviews with 19 First Nations and Métis cancer survivors. Participants were interviewed by phone between May 2022 to March 2023. Thematic analysis was conducted to generate themes, categories, and codes reflecting participants' experiences with patient navigators. RESULTS: Participants reported several supports to help patients with cancer through their cancer journey, including family, community, traditional ways, and First Nations and Métis health support services. Challenges to accessing care included language and communication barriers, logistical challenges, cultural differences, financial challenges, and gaps in care. Indigenous patient navigators may play a critical role in overcoming barriers by providing communication, translation, coordination, education, advocacy, and guidance to Indigenous cancer survivors. In participants' view, the tasks of Indigenous patient navigators could vary, ranging from helping schedule appointments to advocating for the patient's treatment preferences. In addition, Indigenous patient navigators could be helpful bridging Western medicine with traditional medicine when supporting patients seeking cancer care. CONCLUSION: According to study participants, Indigenous patient navigators could be beneficial to Indigenous cancer survivors in Saskatchewan.

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.

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.

Feasibility and Usability of EnergyPoints: A Mobile Health App to Guide Acupressure Use for Cancer Symptom Management.

OBJECTIVE: To examine the feasibility and usability of EnergyPoints™, an innovative mobile health app that teaches and guides people with cancer to implement daily acupressure to self-manage their fatigue and sleep disturbances. METHODS AND INTERVENTION: The study used an integrated agile, human-centered approach. Adults (age 18 years and over) with cancer experiencing at least moderate fatigue, and living in the Greater New York City community, were recruited from social media, patient advocacy groups, and referrals. Twenty participants (in 3 sprints of 3, 5, and 12) were video-recorded thinking aloud while using the app for the first time. They then used the app at home to self-administer acupressure (twice daily for 1 week) while continuously wearing a fitness tracker. Each participant completed an exit interview and modified Computer System Usability Questionnaire post-participation. RESULTS: Participants were ages 40 to 76 years and 65% female; 65% were non-Hispanic white. Mean pass rates per ritual exceeded 80%. Users completed (totally or partially) greater than 90% of stimulating acupressure and 70% of relaxing acupressure rituals. Sprint 3 SPs totally completed at least 1 ritual 87% of the time. The majority agreed or strongly agreed the app was easy to use (90%), easy to learn (85%), easy to understand (75%), and effective in helping perform self-acupressure (85%). In an analysis of ease of completing 5 key tasks, all successfully completed the tasks; 3 users required some assistance. Of 654 usability statements, those coded as personal experience/context (197), content related to acupressure learning (105), and content related to the onboarding/profile (71) were most frequent. The design team integrated recommendations into the app before the next sprint. CONCLUSIONS: Findings supported feasibility and usability, as well as acceptability, and led to significant alterations and improvements. EnergyPoints™ offers an opportunity to mainstream acupressure and help cancer survivors self-manage their symptoms.

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.