Recent Innovations in Primary Care Cancer Survivorship Roles.

BACKGROUND: Despite 2 decades of cancer survivorship research, policy, and advocacy, primary care in the United States has not fully integrated survivorship care into its generalist role. This manuscript describes innovative roles primary care physicians have adopted in survivorship care and how these roles emerged. METHODS: We conducted qualitative in-depth interviews with a snowball sample of 10 US primary care physician innovators in survivorship care. Interviews were recorded and professionally transcribed. Our team met weekly as interviews were completed to review transcripts and write summaries. We analyzed data using an immersion-crystallization process. RESULTS: Innovators did not receive formal survivorship training but gained knowledge experientially and through self-guided education. All worked in academic primary care and/or cancer centers; context strongly influenced role operationalization. We delineated 4 major role-types along a spectrum, with primary care generalist orientations at one end and cancer generalist orientations at the other. Primary care generalists applied survivorship guidelines during regular visits ("GENERALISTS+") or focused on cancer treatment effects amid other comorbidities during blocked clinic time ("oncoGENERALISTS"). Cancer generalists focused on cancer-related sequalae during and after treatment; some provided continuity care to survivors ("ONCOGENERALISTS"), while others incorporated unmet primary care needs into survivorship consults ("ONCOgeneralists"). CONCLUSIONS: Primary care survivorship innovations are occurring in academic primary care and cancer centers settings in the US. To move beyond the work of individual innovators, systematic investments are needed to support adoption of such innovations. For wider diffusion of survivorship care into community primary care, additional strategies that include primary care survivorship education and workforce development are needed to facilitate risk-stratified and shared-care models.

Cancer Survivorship Care in the United States at Facilities Accredited by the Commission on Cancer.

Importance: Since 2021, American College of Surgeons Commission on Cancer (CoC) accreditation standards require providing a survivorship program for patients with adult-onset cancer treated with curative intent. Since more than 70% of all patients with cancer in the US are treated at CoC-accredited facilities, this presents an opportunity for a landscape analysis of survivorship care availability. Objective: To determine the prevalence, types, and outcomes of cancer survivorship services at CoC-accredited facilities. Design, Setting, and Participants: This survey study used an anonymous, online, cross-sectional survey conducted from May 4 to 25, 2023. Participants were CoC-accredited facilities in the US representing diverse CoC program categories, institutional characteristics, geographic regions, and practice types. Department of Veterans Affairs cancer programs were excluded due to data usage restrictions. Data were analyzed from July to October 2023. Exposure: CoC Survivorship Standard 4.8 was released in October 2019 and programs were expected to adhere to the Standard beginning January 1, 2021. Main Outcomes and Measures: Questions included self-reported survivorship program characteristics, availability of services aligned to CoC Survivorship Standard 4.8, and perceived program impacts. Response frequencies and proportions were determined in aggregate and by CoC program category. Results: There were 1400 eligible programs, and 384 programs participated (27.4% response rate). All regions and eligible program categories were represented, and most had analytic caseloads of 500 to 4999 patients in 2021. Most survivorship program personnel included nurses (334 programs [87.0%]) and social workers (278 programs [72.4%]), while physical (180 programs [46.9%]) and occupational (87 programs [22.7%]) therapists were less common. Services most endorsed as available for all survivors were screening for new cancers (330 programs [87.5%]), nutritional counseling (325 programs [85.3%]), and referrals to specialists (320 programs [84.7%]), while treatment summaries (242 programs [64.7%]), and survivorship care plans (173 programs [43.0%]), sexual health (217 programs [57.3%]), and fertility (214 programs [56.9%]) were less common. Survivorship services were usually delivered by cancer treatment teams (243 programs [63.3%]) rather than specialized survivorship clinics (120 programs [31.3%]). For resources needed, additional advanced practice clinicians with dedicated survivorship effort (205 programs [53.4%]) and electronic health record enhancements (185 programs [48.2%]) were most endorsed. Lack of referrals and low patient awareness were endorsed as the primary barriers. A total of 335 programs (87.2%) agreed that Survivorship Standard 4.8 helped advance their programs. Conclusions and Relevance: These findings of this survey study of CoC-accredited programs establish a benchmark for survivorship care delivery in the US, identify gaps in specific services and opportunities for intervention, contribute to longitudinal reevaluation for tracking progress nationally, and suggest the value of survivorship care standards.

Primary Care of Adult Cancer Survivors.

By 2040, there will be an estimated 26 million cancer survivors in the United States. The essential components of survivorship care are (1) surveillance for cancer recurrence, (2) surveillance for new primary cancers, (3) management of physical and psychological long-term effects of treatment, (4) prevention or mitigation of late treatment effects, and (5) coordination of care between the oncology team and primary care clinicians. Recommendations for surveillance to detect recurrence vary with cancer type and stage at diagnosis. Screening for new primary cancers is the same as for the general population. Although many cancer survivors do not undergo recommended surveillance or screening, family physicians can encourage and facilitate adherence. Family physicians should also monitor and manage the physical and psychological effects of cancer diagnosis and treatment, such as depression, lymphedema, pain, and sexual dysfunction. Cardiovascular disease is a leading cause of death for cancer survivors, often as a long-term effect of cancer treatments. Clinicians should counsel patients on cessation of tobacco and alcohol use, participation in recommended levels of physical activity, and adherence to optimal nutrition recommendations. Finally, family physicians should work with the cancer care team to coordinate the care plan and assure that all recommended components are achieved. Written survivorship care plans should be provided to cancer survivors to help them transition from active treatment to posttreatment monitoring. .

A qualitative study of stakeholders' experiences with and acceptability of a technology-supported health coaching intervention (SHARE-S) delivered in coordination with cancer survivorship care.

PURPOSE: Healthy cancer survivorship involves patients' active engagement with preventative health behaviors and follow-up care. While clinicians and patients have typically held dual responsibility for activating these behaviors, transitioning some clinician effort to technology and health coaches may enhance guideline implementation. This paper reports on the acceptability of the Shared Healthcare Actions & Reflections Electronic systems in survivorship (SHARE-S) program, an entirely virtual multicomponent intervention incorporating e-referrals, remotely-delivered health coaching, and automated text messages to enhance patient self-management and promote healthy survivorship. METHODS: SHARE-S was evaluated in single group hybrid implementation-effectiveness pilot study. Patients were e-referred from the clinical team to health coaches for three health self-management coaching calls and received text messages to enhance coaching. Semi-structured qualitative interviews were conducted with 21 patient participants, 2 referring clinicians, and 2 health coaches to determine intervention acceptability (attitudes, appropriateness, suitability, convenience, and perceived effectiveness) and to identify important elements of the program and potential mechanisms of action to guide future implementation. RESULTS: SHARE-S was described as impactful and convenient. The nondirective, patient-centered health coaching and mindfulness exercises were deemed most acceptable; text messages were less acceptable. Stakeholders suggested increased flexibility in format, frequency, timing, and length of participation, and additional tailored educational materials. Patients reported tangible health behavior changes, improved mood, and increased accountability and self-efficacy. CONCLUSIONS: SHARE-S is overall an acceptable and potentially effective intervention that may enhance survivors' self-management and well-being. Alterations to tailored content, timing, and dose should be tested to determine impact on acceptability and outcomes.

Current evidence supporting associations of DNA methylation measurements with survivorship burdens in cancer survivors: A scoping review.

INTRODUCTION: Identifying reliable biomarkers that reflect cancer survivorship symptoms remains a challenge for researchers. DNA methylation (DNAm) measurements reflecting epigenetic changes caused by anti-cancer therapy may provide needed insights. Given lack of consensus describing utilization of DNAm data to predict survivorship issues, a review evaluating the current landscape is warranted. OBJECTIVE: Provide an overview of current studies examining associations of DNAm with survivorship burdens in cancer survivors. METHODS: A literature review was conducted including studies if they focused on cohorts of cancer survivors, utilized peripheral blood cell DNAm data, and evaluated the associations of DNAm and survivorship issues. RESULTS: A total of 22 studies were identified, with majority focused on breast (n = 7) or childhood cancer (n = 9) survivors, and half studies included less than 100 patients (n = 11). Survivorship issues evaluated included those related to neurocognition (n = 5), psychiatric health (n = 3), general wellness (n = 9), chronic conditions (n = 5), and treatment specific toxicities (n = 4). Studies evaluated epigenetic age metrics (n = 10) and DNAm levels at individual CpG sites or regions (n = 12) for their associations with survivorship issues in cancer survivors along with relevant confounding factors. Significant associations of measured DNAm in the peripheral blood samples of cancer survivors and survivorship issues were identified. DISCUSSION/CONCLUSION: Studies utilizing epigenetic age metrics and differential methylation analysis demonstrated significant associations of DNAm measurements with survivorship burdens. Associations were observed encompassing diverse survivorship outcomes and timeframes relative to anti-cancer therapy initiation. These findings underscore the potential of these measurements as useful biomarkers in survivorship care and research.

Survivorship after Hodgkin lymphoma and the right to be forgotten.

PURPOSE OF REVIEW: The significantly improved survivorship in Hodgkin lymphoma is fraught with challenges, including persistent symptoms, secondary health complications, and socio-professional obstacles. This review highlights the need for comprehensive survivorship care plans that include detection of relapse, assessment of long-term side effects, screening for secondary cancers, psychological support, and assistance with socio-professional integration. RECENT FINDINGS: Cardiovascular diseases, secondary malignancies and other associated risks remains an important problem related to the effective treatment of patients with Hodgkin lymphoma. Furthermore, fertility concerns and endocrine disorders remain prevalent issues posttreatment. An optimal evaluation of the risks before and after treatment is essential to reduce the impact of these side effects on quality of life. Addressing the socio-professional reintegration of survivors, the concept of the 'Right to be forgotten' emerges as a critical consideration. This principle seeks to eliminate discrimination against cancer survivors in accessing financial services and aims for legislative changes to ensure that past cancer diagnosis does not unfairly affect survivors' futures. Implementation of this 'Right to be forgotten' in the legislature, is currently underway in European countries. SUMMARY: The focus of survivorship care has shifted towards the holistic management of these long-term outcomes. Quality of life for Hodgkin lymphoma survivors is affected by various treatment-related factors, with evidence suggesting that physical, psychological and socio-professional domains remain impacted years after treatment.

Endocrine consequences of breast cancer therapy and survivorship.

Breast cancer survivorship is increasing, due to earlier diagnosis of the disease and more effective therapies. Long-term endocrine sequelae, including early menopause, bone health, fertility implications and menopausal symptoms, are important survivorship issues. Ovarian failure is common with chemotherapy and options for preserving fertility in young women include ovarian suppression during chemotherapy and oocyte or embryo cryopreservation before chemotherapy. Tamoxifen as adjunct therapy in premenopausal women leads to ovarian stimulation, sometimes ovulation and occasionally pregnancy with important teratogenic implications. Aromatase inhibitor therapy with or without gonadotrophin releasing hormone (GnRH) agonist leads to profound bone loss and anti-resorptive therapy is advised to prevent fracture. Tamoxifen acts to preserve bone in postmenopausal women but not premenopausal women. Pregnancy is not discouraged in young women with early breast cancer, even to the point of pausing adjunct therapy in order to conceive. However, menopausal hormone therapy is discouraged even years later. Non-hormonal therapy for menopausal symptoms in breast cancer survivors is available but, in some cases, estrogen-containing therapy may be worthy of consideration for quality of life in the informed patient.

Shifting Gears: Transitioning Healthy Lifestyle Education Into Early Post-Treatment Survivorship.

During cancer treatment, oncology nurses emphasize patient and family education about coping strategies to manage adverse events such as gastrointestinal effects and fatigue. However, information about how to return to health.

Applying Implementation Science to Identify Primary Care Providers' Enablers and Barriers to Using Survivorship Care Plans.

Primary care providers (PCPs) have been given the responsibility of managing the follow-up care of low-risk cancer survivors after they are discharged from the oncology center. Survivorship Care Plans (SCPs) were developed to facilitate this transition, but research indicates inconsistencies in how they are implemented. A detailed examination of enablers and barriers that influence their use by PCPs is needed to understand how to improve SCPs and ultimately facilitate cancer survivors' transition to primary care. An interview guide was developed based on the second version of the Theoretical Domains Framework (TDF-2). PCPs participated in semi-structured interviews. Qualitative content analysis was used to develop a codebook to code text into each of the 14 TDF-2 domains. Thematic analysis was also used to generate themes and subthemes. Thirteen PCPs completed the interview and identified the following barriers to SCP use: unfamiliarity with the side effects of cancer treatment (Knowledge), lack of clarity on the roles of different healthcare professionals (Social Professional Role and Identity), follow-up tasks being outside of scope of practice (Social Professional Role and Identity), increased workload, lack of options for psychosocial support for survivors, managing different electronic medical records systems, logistical issues with liaising with oncology (Environmental Context and Resources), and patient factors (Social Influences). PCPs value the information provided in SCPs and found the follow-up guidance provided to be most helpful. However, SCP use could be improved through streamlining methods of communication and collaboration between oncology centres and community-based primary care settings.

Current evidence of integrative oncology modalities for managing adverse effects and survivorship issues among adolescents and young adult (AYA) cancer patients and survivors.

PURPOSE OF REVIEW: Symptom burden of cancer diagnosis and treatment has led adolescents and young adult cancer patients (AYAC) and survivors to seek different self-management strategies including integrative oncology (IO) modalities. IO holds great promise to improve survivorship issues in adolescents and young adult (AYA) cancer survivors. This review aims to encompass the current evidence of IO modalities and to analyze the efficacy of IO for managing survivorship issues among AYA cancer patients and survivors. RECENT FINDINGS: Nineteen randomized controlled trials included in this review evaluated mind and body modalities including both physical and psychological (74%) and psychological only (26%) modalities. Most assessed IO modalities were physical activity (PA) (37%) and structured exercise (10%). Most effective IO modalities found were PA, massage, mindfulness-based stress reduction (MBSR) and light therapy for treating AYA symptom burden. The Cochrane risk of bias (RoB-2) concluded 21% studies had high risk, 58% possessed some concerns and 21% had low risk. SUMMARY: Although evidence has shown that a number of IO modalities may improve survivorship among AYA cancer survivors, more rigorous study designs are needed in order for these modalities to be routinely recommended for use in clinical practice.

Premature thymic functional senescence is a hallmark of childhood acute lymphoblastic leukemia survivorship.

Childhood acute lymphoblastic leukemia (cALL) survivors suffer early-onset chronic diseases classically associated with aging. Normal aging is accompanied by organ dysfunctions, including immunological ones. We hypothesize that thymic immunosenescence occurs in cALL survivors and that its severity may correlate with early-onset chronic diseases. The PETALE study is a cALL survivor cohort with an extensive cardiovascular and metabolic evaluation. The thymic immunosenescence biomarker, signal joint T-cell receptor excision circles (TREC), was evaluated and was highly correlated with age in healthy participants (n = 281) and cALL survivors (n = 248). We observed a systematic thymic immunoage accentuation in each cALL survivor compared to controls ranging from 5.9 to 88.3 years. The immunoage gain was independent of age at diagnosis and treatment modalities and was more severe for females. Thymic aging was associated with several pathophysiological parameters, was greater in survivors suffering from metabolic syndrome, but there was no significant association with global physical condition. The decrease in TREC was independent from blood cell counts, which were normal, suggesting a segmental aging of the thymic compartment. Indeed, increased plasmatic T cell regulatory cytokines IL-6, IL-7 and GM-CSF accompanied high immunoage gain. Our data reveal that cALL or its treatment trigger a rapid immunoage gain followed by further gradual thymic immunosenescence, similar to normal aging. This leads to an enduring shift in accentuated immunoage compared to chronological age. Thus, accentuated thymic immunosenescence is a hallmark of cALL survivorship and TREC levels could be useful immunosenescence biomarkers to help monitoring the health of cancer survivors.

Exploring Holistic Cancer Care and Survivorship in India Through the Kerala Model of Palliative Care: Role of Community Nurse and Outpatient Meetings.

Support groups and meetings are self-help gatherings that provide a unique sense of community, unconditional acceptance, and information on cancer and its treatment. This cross-sectional study examined 12 outpatient meetings within the Kerala model of palliative care, a community-based service provided to patients irrespective of disease, stage, or prognosis starting from the time of diagnosis. The study focused on the pivotal role of community nurses in facilitating these meetings, with participants including cancer patients and survivors. Using in-depth interviews (n = 52) and participant observations, this research used a qualitative approach and explored the dynamics and outcomes of outpatient meetings. Findings highlight the indispensable contributions of these community nurses serving as linchpins in providing support, guiding discussions, and offering crucial education. Outpatient meetings effectively addressed psychosocial concerns, combatted stigmas associated with cancer, and promoted informed decision making in cancer care. The study emphasizes the need for recognizing the role played by community nurses in improving psychosocial support and diminishing stigma, and ultimately the quality of life of patients and survivors through the palliative cancer care within the Kerala model. We also underscore the need for policy initiatives, resource allocation, and training programs tailored to support these frontline health care providers effectively.

Developing national cancer survivorship standards to inform quality of care in the United States using a consensus approach.

PURPOSE: To develop United States (US) standards for survivorship care that informs (1) essential health system policy and process components and (2) evaluation of the quality of survivorship care. METHODS: The National Cancer Institute and the Department of Veterans Affairs led a review to identify indicators of quality cancer survivorship care in the domains of health system policy, process, and evaluation/assessment. A series of three virtual consensus meetings with survivorship care and research experts and advocates was conducted to rate the importance of the indicators and refine the top indicators. The final set of standards was developed, including ten indicators in each domain. RESULTS: Prioritized items were survivor-focused, including processes to both assess and manage physical, psychological, and social issues, and evaluation of patient outcomes and experiences. Specific indicators focused on developing a business model for sustaining survivorship care and collecting relevant business metrics (e.g., healthcare utilization, downstream revenue) to show value of survivorship care to health systems. CONCLUSIONS: The National Standards for Cancer Survivorship Care can be used by health systems to guide development of new survivorship care programs or services or to assess alignment and enhance services in existing survivorship programs. Given the variety of settings providing care to survivors, it is necessary for health systems to adapt these standards based on factors including age-specific needs, cancer types, treatments received, and health system resources. IMPLICATIONS FOR CANCER SURVIVORS: With over 18 million cancer survivors in the United States, many of whom experience varied symptoms and unmet needs, it is essential for health systems to have a comprehensive strategy to provide ongoing care. The US National Standards for Survivorship Care should serve as a blueprint for what survivors and their families can anticipate after a cancer diagnosis to address their needs.