Childhood cancer models of survivorship care: a scoping review of elements of care and reported outcomes.

PURPOSE: This study aimed to systematically map elements of care and respective outcomes described in the literature for different models of post-treatment care for survivors of childhood cancer. METHODS: MEDLINE, CINAHL, and Embase were searched with combinations of free text terms, synonyms, and MeSH terms using Boolean operators and are current to January 2024. We included studies that described post-treatment cancer survivorship models of care and reported patient or service level elements of care or outcomes, which we mapped to the Quality of Cancer Survivorship Care Framework domains. RESULTS: Thirty-eight studies with diverse designs were included representing 6101 childhood cancer survivors (or their parent/caregiver) and 14 healthcare professionals. A diverse range of models of care were reported, including paediatric oncologist-led long-term follow-up, multi-disciplinary survivorship clinics, shared-care, and primary care-led follow-up. Elements of care at the individual level most commonly included surveillance for cancer recurrence as well as assessment of physical and psychological effects. At the service level, satisfaction with care was frequently reported but few studies reported how treatment-related-late effects were managed. The evidence does not support one model of care over another. CONCLUSIONS: Gaps in evidence exist regarding distal outcomes such as costs, health care utilization, and mortality, as well as understanding outcomes of managing chronic disease and physical or psychological effects. The findings synthesized in this review provide a valuable reference point for future service planning and evaluation. IMPLICATIONS FOR CANCER SURVIVORS: Decades of research highlight the importance of survivorship care for childhood cancer survivors who are at risk of serious treatment-related late effects. This review emphasizes there is no single, 'one-size fits all' approach for delivering such care to this vulnerable population.

Conversion of a Validated Melanoma Risk Stratification Tool Into a Tablet-Based Patient Questionnaire for Targeted Melanoma Screening in Primary Care Settings: A Pilot Study.

BACKGROUND: Risk stratification can identify individuals in primary care settings who are at increased risk of developing melanoma. OBJECTIVE: Converting and implementing a validated risk stratification tool as a patient self-administered tablet-based survey. METHODS: Mackie risk stratification tool was transformed into a patient questionnaire. The questionnaire was completed in academic dermatologist practices by patients and dermatologists and revised to optimize sensitivity and specificity using physician assessment as gold standard. The optimized survey was administered before routine primary care visits during 2019 to 2021. High-risk patients were referred to dermatology. The number needed to screen (NNS), sensitivity, specificity, positive predictive value, and negative predictive value to identify a melanoma were calculated. RESULTS: Of the 7,893 respondents, 5,842 (74%) and 2,051 (26%) patients were categorized as low-risk and high-risk population, respectively. The NNS to identify 1 melanoma was 64 in the high-risk population. CONCLUSION: Incorporating self-administered patient-risk stratification tools in primary care settings can identify high-risk individuals for targeted melanoma screening. Further studies are needed to optimize specificity and sensitivity in more targeted populations.

International Survey of Psychosocial Care for Cancer Survivors in Low-/Middle- and High-Income Countries: Current Practices, Barriers, and Facilitators to Care.

PURPOSE: The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS: The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS: Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION: The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.

Gaps in Access to Medically Necessary Dental Care for Patients Living With and Beyond Cancer: We Must Do Better.

Delivery of high-quality, evidence-based oral care for those living with and beyond cancer needed!

Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations.

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.

Survivorship Care for People Affected by Advanced or Metastatic Cancer: MASCC-ASCO Standards and Practice Recommendations.

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared with those with early-stage disease or those nearing the end of life. These Multinational Association for Supportive Care in Cancer (MASCC)-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: A MASCC-ASCO expert panel was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including eight people with lived experience) across 33 countries (33% were low- to middle-resource countries) participated in the Delphi study and achieved ≥94.8% agreement for seven standards, (1) Person-Centered Care; (2) Coordinated and Integrated Care; (3) Evidence-Based and Comprehensive Care; (4) Evaluated and Communicated Care; (5) Accessible and Equitable Care; (6) Sustainable and Resourced Care; and (7) Research and Data-Driven Care, and ≥84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards support optimization of health outcomes and care experiences by providing guidance to stakeholders (health care professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers). Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.Additional information is available at www.mascc.org, www.asco.org/standards and www.asco.org/survivorship-guidelines.

Vulvar Cancer, Version 3.2024, NCCN Clinical Practice Guidelines in Oncology.

Vulvar cancer is annually diagnosed in an estimated 6,470 individuals and the vast majority are histologically squamous cell carcinomas. Vulvar cancer accounts for 5% to 8% of gynecologic malignancies. Known risk factors for vulvar cancer include increasing age, infection with human papillomavirus, cigarette smoking, inflammatory conditions affecting the vulva, and immunodeficiency. Most vulvar neoplasias are diagnosed at early stages. Rarer histologies exist and include melanoma, extramammary Paget's disease, Bartholin gland adenocarcinoma, verrucous carcinoma, basal cell carcinoma, and sarcoma. This manuscript discusses recommendations outlined in the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for treatments, surveillance, systemic therapy options, and gynecologic 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.

Online description of services provided in adult survivorship programs across U.S. accredited cancer centers.

PURPOSE: The American College of Surgeons Standard 4.8 requires an institution to implement a survivorship program to become a Commission on Cancer (CoC)-accredited cancer center. The online information offered by these cancer centers can help educate patients and their caregivers about available services. We assessed the content of survivorship program websites of CoC-accredited cancer centers in the United States. METHODS: Of the 1245 CoC-accredited centers for adults, we sampled 325 institutions (26%) based proportionately on the 2019 new cancer cases by state. Website pages of the institutions' survivorship programs were assessed for information and services offered using the COC Standard 4.8. We included programs for adult survivors of adult- and childhood-onset cancers. RESULTS: 54.5% of the cancer centers did not have a survivorship program website. Of the 189 included programs, most were aimed at adult survivors in general, rather than those with specific cancer types. On average, five essential CoC-recommended services were described, most commonly nutrition, care plans, and psychology services. The least mentioned services were genetic counseling, fertility, and smoking cessation. Most programs described services offered to patients who had completed treatment, while 7.4% of described services for those with metastatic disease. CONCLUSION: More than half of CoC-accredited programs did have information about cancer survivorship programs on their websites and when included, had variable and limited description of services. IMPLICATIONS FOR CANCER SURVIVORS: Our study provides an overview of online cancer survivorship services and offers a methodology that may be used by cancer centers to review, expand, and improve the information described on their websites.

NCCN Guidelines® Insights: Cervical Cancer, Version 1.2024.

The NCCN Guidelines for Cervical Cancer provide recommendations for all aspects of management for cervical cancer, including the diagnostic workup, staging, pathology, and treatment. The guidelines also include details on histopathologic classification of cervical cancer regarding diagnostic features, molecular profiles, and clinical outcomes. The treatment landscape of advanced cervical cancer is evolving constantly. These NCCN Guidelines Insights provide a summary of recent updates regarding the systemic therapy recommendations for recurrent or metastatic disease.

Patient perceptions of altering chemotherapy treatment due to peripheral neuropathy.

PURPOSE: Clinical practice guidelines recommend altering neurotoxic chemotherapy treatment in patients experiencing intolerable chemotherapy-induced peripheral neuropathy (CIPN). The primary objective of this survey was to understand patient's perspectives on altering neurotoxic chemotherapy treatment, including their perceptions of the benefits of preventing irreversible CIPN and the risks of reducing treatment efficacy. METHODS: A cross-sectional online survey was distributed via social networks to patients who were currently receiving or had previously received neurotoxic chemotherapy for cancer. Survey results were analyzed using descriptive statistics and qualitative analysis. RESULTS: Following data cleaning, 447 participants were included in the analysis. The median age was 57 years, 93% were white, and most were from the UK (53%) or USA (38%). Most participants who were currently or recently treated expected some CIPN symptom resolution (86%), but 45% of those who had completed treatment more than a year ago reported experiencing no symptom resolution. Participants reported that they would discontinue chemotherapy treatment for less severe CIPN if they knew their symptoms would be permanent than if symptoms would disappear after treatment. Most patients stated that the decision to alter chemotherapy or not was usually made collaboratively between the patient and their treating clinician (61%). The most common reason participants were reluctant to talk with their clinician about CIPN was fear that treatment would be altered. Participants noted a need for improved understanding of CIPN symptoms and their permanence, better patient education relating to CIPN prior to and after treatment, and greater clinician understanding and empathy around CIPN. CONCLUSIONS: This survey highlights the importance of shared decision-making, including a consideration of both the long-term benefits and risks of altering neurotoxic chemotherapy treatment due to CIPN. Additional work is needed to develop decision aids and other communication tools that can be used to improve shared decision making and help patients with cancer achieve their treatment goals.

Psychosocial care for cancer survivors: A global review of national cancer control plans.

OBJECTIVE: National Cancer Control Plans (NCCPs) are high-level policy documents that prioritise actions to be taken to improve cancer control activities. As the number of cancer survivors grows globally, there is an urgent need to assess whether and how psychosocial care across the cancer care continuum is included in NCCPs. This review aimed to ascertain the extent to which NCCPs referenced psycho-oncology care for cancer survivors in the post-treatment phase. METHODS: NCCPs were obtained from the International Cancer Control Partnership (ICCP) portal (in November 2021) and reviewed in two phases. In Phase 1, all available NCCPs were screened to determine whether they mentioned psycho-oncology or survivorship. In Phase 2, reviewers extracted data from the NCCPs identified in Phase 1 on the degree that each plan articulated objectives/goals to improve psychosocial care in the post-treatment survivorship phase. RESULTS: We screened 237 NCCPs. Of these, initial potential reference to psycho-oncology and survivorship content were identified in 97 plans (41%). In Phase 1, 57/97 (59%) had reference to psycho-oncology or survivorship content within defined criteria. In Phase 2, 27/97 (28%) had little mention of psycho-oncology specifically in survivorship, 47/97 (48%) had some (general or brief) mention, and the remaining 23/97 (24%) had substantial content/specific sections and clearly articulated goals and/or objectives. Common goals for improving psychosocial care in the post-treatment period included building capacity of healthcare professionals, implementing rehabilitation models, and increasing the utilisation of community services. CONCLUSIONS: Most NCCPs did not reference psycho-oncology and only one-quarter contained clear objectives specifically in the post-treatment survivorship phase.

Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature.

Patient navigation is a strategy for overcoming barriers to reduce disparities and to improve access and outcomes. The aim of this umbrella review was to identify, critically appraise, synthesize, and present the best available evidence to inform policy and planning regarding patient navigation across the cancer continuum. Systematic reviews examining navigation in cancer care were identified in the Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, Embase, Cumulative Index of Nursing and Allied Health (CINAHL), Epistemonikos, and Prospective Register of Systematic Reviews (PROSPERO) databases and in the gray literature from January 1, 2012, to April 19, 2022. Data were screened, extracted, and appraised independently by two authors. The JBI Critical Appraisal Checklist for Systematic Review and Research Syntheses was used for quality appraisal. Emerging literature up to May 25, 2022, was also explored to capture primary research published beyond the coverage of included systematic reviews. Of the 2062 unique records identified, 61 systematic reviews were included. Fifty-four reviews were quantitative or mixed-methods reviews, reporting on the effectiveness of cancer patient navigation, including 12 reviews reporting costs or cost-effectiveness outcomes. Seven qualitative reviews explored navigation needs, barriers, and experiences. In addition, 53 primary studies published since 2021 were included. Patient navigation is effective in improving participation in cancer screening and reducing the time from screening to diagnosis and from diagnosis to treatment initiation. Emerging evidence suggests that patient navigation improves quality of life and patient satisfaction with care in the survivorship phase and reduces hospital readmission in the active treatment and survivorship care phases. Palliative care data were extremely limited. Economic evaluations from the United States suggest the potential cost-effectiveness of navigation in screening programs.

Primary care physicians' knowledge and confidence in providing cancer survivorship care: a systematic review.

PURPOSE: To systematically review existing literature on knowledge and confidence of primary care physicians (PCPs) in cancer survivorship care. METHODS: PubMed, Ovid MEDLINE, CINAHL, Embase, and PsycINFO were searched from inception to July 2022 for quantitative and qualitative studies. Two reviewers independently assessed studies for eligibility and quality. Outcomes were characterized by domains of quality cancer survivorship care. RESULTS: Thirty-three papers were included, representing 28 unique studies; 22 cross-sectional surveys, 8 qualitative, and 3 mixed-methods studies. Most studies were conducted in North America (n = 23) and Europe (n = 8). For surveys, sample sizes ranged between 29 and 1124 PCPs. Knowledge and confidence in management of physical (n = 19) and psychosocial effects (n = 12), and surveillance for recurrences (n = 14) were described most often. Generally, a greater proportion of PCPs reported confidence in managing psychosocial effects (24-47% of PCPs, n= 5 studies) than physical effects (10-37%, n = 8). PCPs generally thought they had the necessary knowledge to detect recurrences (62-78%, n = 5), but reported limited confidence to do so (6-40%, n = 5). There was a commonly perceived need for education on long-term and late physical effects (n = 6), and cancer surveillance guidelines (n = 9). CONCLUSIONS: PCPs' knowledge and confidence in cancer survivorship care varies across care domains. Suboptimal outcomes were identified in managing physical effects and recurrences after cancer. IMPLICATIONS FOR CANCER SURVIVORS: These results provide insights into the potential role of PCPs in cancer survivorship care, medical education, and development of targeted interventions.

Future trends in incidence and long-term survival of metastatic cancer in the United States.

BACKGROUND: Previous studies have demonstrated epidemiological trends in individual metastatic cancer subtypes; however, research forecasting long-term incidence trends and projected survivorship of metastatic cancers is lacking. We assess the burden of metastatic cancer to 2040 by (1) characterizing past, current, and forecasted incidence trends, and (2) estimating odds of long-term (5-year) survivorship. METHODS: This retrospective, serial cross-sectional, population-based study used registry data from the Surveillance, Epidemiology, and End Results (SEER 9) database. Average annual percentage change (AAPC) was calculated to describe cancer incidence trends from 1988 to 2018. Autoregressive integrating moving average (ARIMA) models were used to forecast the distribution of primary metastatic cancer and metastatic cancer to specific sites from 2019 to 2040 and JoinPoint models were fitted to estimate mean projected annual percentage change (APC). RESULTS: The average annual percent change (AAPC) in incidence of metastatic cancer decreased by 0.80 per 100,000 individuals (1988-2018) and we forecast an APC decrease by 0.70 per 100,000 individuals (2018-2040). Analyses predict a decrease in metastases to liver (APC = -3.40, 95% CI [-3.50, -3.30]), lung (APC (2019-2030) = -1.90, 95% CI [-2.90, -1.00]); (2030-2040) = -3.70, 95% CI [-4.60, -2.80]), bone (APC = -4.00, 95% CI [-4.30, -3.70]), and brain (APC = -2.30, 95% CI [-2.60, -2.00]). By 2040, patients with metastatic cancer are predicted to have 46.7% greater odds of long-term survivorship, driven by increasing plurality of patients with more indolent forms of metastatic disease. CONCLUSIONS: By 2040, the distribution of metastatic cancer patients is predicted to shift in predominance from invariably fatal to indolent cancers subtypes. Continued research on metastatic cancers is important to guide health policy and clinical intervention efforts, and direct allocations of healthcare resources.

Cancer that has spread beyond the area where it originated and into different organs is called metastatic cancer. This study analyzed trends in metastatic cancer incidence, the proportion of those with metastatic cancer surviving 5 years after diagnosis and the locations in the body each cancer had spread to. The incidence of metastatic cancer decreased between 1988 and 2018 and is expected to continue to decrease until 2040. Some of the most common locations cancer spreads to is the lung, liver, brain, and bone. Metastatic cancer incidence to these areas is predicted to decrease. Also, the likelihood of surviving for more than 5 years after diagnosis with metastatic cancer is predicted to increase by 2040. This research should facilitate optimal planning of future healthcare resources and policy.

Management of Anxiety and Depression in Adult Survivors of Cancer: ASCO Guideline Update.

PURPOSE: To update the American Society of Clinical Oncology guideline on the management of anxiety and depression in adult cancer survivors. METHODS: A multidisciplinary expert panel convened to update the guideline. A systematic review of evidence published from 2013-2021 was conducted. RESULTS: The evidence base consisted of 17 systematic reviews ± meta analyses (nine for psychosocial interventions, four for physical exercise, three for mindfulness-based stress reduction [MBSR], and one for pharmacologic interventions), and an additional 44 randomized controlled trials. Psychological, educational, and psychosocial interventions led to improvements in depression and anxiety. Evidence for pharmacologic management of depression and anxiety in cancer survivors was inconsistent. The lack of inclusion of survivors from minoritized groups was noted and identified as an important consideration to provide high-quality care for ethnic minority populations. RECOMMENDATIONS: It is recommended to use a stepped-care model, that is, provide the most effective and least resource-intensive intervention based on symptom severity. All oncology patients should be offered education regarding depression and anxiety. For patients with moderate symptoms of depression, clinicians should offer cognitive behavior therapy (CBT), behavioral activation (BA), MBSR, structured physical activity, or empirically supported psychosocial interventions. For patients with moderate symptoms of anxiety, clinicians should offer CBT, BA, structured physical activity, acceptance and commitment therapy, or psychosocial interventions. For patients with severe symptoms of depression or anxiety, clinicians should offer cognitive therapy, BA, CBT, MBSR, or interpersonal therapy. Treating clinicians may offer a pharmacologic regimen for depression or anxiety for patients who do not have access to first-line treatment, prefer pharmacotherapy, have previously responded well to pharmacotherapy, or have not improved following first-line psychological or behavioral management.Additional information is available at www.asco.org/survivorship-guidelines.