Prevalence of cancer survivors in the United States.

BACKGROUND: With aging of the population and improvements in diagnosis, treatment, and supportive care, the number of cancer survivors in the United States (US) has increased; updated prevalence estimates are needed. METHODS: Cancer prevalence on January 1, 2022 was estimated using the Prevalence Incidence Approach Model, utilizing incidence, survival, and mortality. Prevalence by age decade, sex, and time from diagnosis were calculated. The percentage of cancer survivors in the projected US population by age and sex was calculated as the ratio of the sex-specific projected prevalence to the sex-specific projected US population. RESULTS: There were an estimated 18.1 million US cancer survivors as of January 1, 2022. From 2022 to 2030, the number of US cancer survivors is projected to increase to 21.6 million; by 2040, the number is projected to be 26 million. Long-term survivors are highly prevalent; in 2022, 70% of cancer survivors survived 5 years or more after diagnosis, and 11% of cancer survivors survived 25 years or more after diagnosis. Among all US females aged 40-54, 3.6% were cancer survivors; among females aged 65-74, 14.5% were cancer survivors; among females aged 85 and older, 36.4% were cancer survivors. Among all US males aged 40-54, 2.1% were cancer survivors; among males aged 65-74, 16% were cancer survivors; among those aged 85 and older, 48.3% were cancer survivors. CONCLUSIONS: Cancer survivors are growing in number. In the US, most cancer survivors are long-term and very long-term survivors, representing a significant proportion of the US population.

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.

Survivorship concerns among individuals diagnosed with metastatic cancer: Findings from the Cancer Experience Registry.

INTRODUCTION: Individuals with metastatic cancer experience many medical, physical, and emotional challenges due to changing medical regimens, oscillating disease states, and side effects. The purpose of this study was to describe the type and prevalence of survivorship concerns reported by individuals with metastatic cancer, and their associations with cancer diagnosis, treatment, and socio-demographic variables. METHODS: This study utilized data from the Cancer Support Community's Cancer Experience Registry. Individuals were included if they self-reported a solid tumor metastatic cancer and completed CancerSupportSource, which evaluates five domains of concerns (emotional well-being, symptom burden, body image/healthy lifestyle, healthcare team communication, and relationships/intimacy). Multivariable linear regression examined associations between independent predictors of each survivorship concern domain. RESULTS: Of the 403 included participants, individuals reported a metastatic diagnosis of breast (43%), colorectal (20%), prostate (7%), lung (7%), gynecologic cancer (6%) and other. Nearly all (96%) reported at least one survivorship concern, with the most prevalent concern about cancer progression or recurrence. Survivorship concerns were higher across multiple domains for individuals unemployed due to disability. Individuals who were less than five years since diagnosis reported higher concerns related to emotional well-being, symptom burden, and healthcare communication compared to those more than five years since diagnosis. CONCLUSION: Individuals with metastatic cancer experience a variety of moderate-to-severe survivorship concerns that warrant additional investigation. IMPLICATIONS FOR CANCER SURVIVORS: As the population of individuals with metastatic cancer lives longer, future research must investigate solutions to address modifiable factors associated with survivorship concerns, such as unemployment due to disability.

Advancing health equity in cancer survivorship research: National Institutes of Health 2017-2022 portfolio review.

BACKGROUND: Communities and researchers have called for a paradigm shift from describing health disparities to a health equity research agenda that addresses structural drivers. Therefore, we examined whether the cancer survivorship research portfolio has made this shift. METHODS: We identified grants focused on populations experiencing health disparities from the National Institutes of Health (NIH) Cancer Survivorship Research Portfolio (N = 724), Fiscal Years 2017-2022. Grant characteristics were abstracted, drivers of health disparities were mapped onto the levels and domains of influence, and opportunities for future research were identified. RESULTS: A total of 147 survivorship grants focused on health disparities were identified, of which 73.5% of grants focused on survivors from racial and ethnic minoritized groups, 25.9% living in rural areas, 24.5% socioeconomically disadvantaged, and 2.7% sexual and gender minority groups. Study designs were 51.0% observational; 82.3% of grants measured or intervened on at least 1 individual-level of influence compared to higher levels of influence (32.7% interpersonal, 41.5% institutional and community, and 12.2% societal). Behavioral and health care system domains of influence were commonly represented, especially at the individual level (47.6% and 36.1%, respectively). Less frequently represented was the physical and built environment (12.2%). CONCLUSIONS: NIH-funded cancer survivorship research on health disparities is still focused on individual level of influence. However, the proportion of grants examining structural and social drivers as well as the mechanisms that drive disparities in health care and health outcomes among cancer survivors have increased over time. Gaps in funded research on specific populations, cancer types, and focus areas of survivorship science were identified and warrant priority.

Financial toxicity among people with metastatic cancer: findings from the Cancer Experience Registry.

PURPOSE: This study describes financial toxicity (FT) reported by people with metastatic cancer, characteristics associated with FT, and associations between FT and compensatory strategies to offset costs. METHODS: Cancer Support Community's Cancer Experience Registry data was used to identify respondents with a solid tumor metastatic cancer who completed the Functional Assessment of Chronic Illness Therapy COmprehensive Score for Financial Toxicity (FACIT-COST) measure. Multivariable logistic regression analyses examined associations between respondent characteristics and FT, and FT and postponing medical visits, nonadherence to medications, and postponing supportive and/or psychosocial care. RESULTS: 484 individuals were included in the analysis; the most common cancers included metastatic breast (31%), lung (13%), gynecologic (10%), and colorectal (9%). Approximately half of participants (50.2%) reported some degree of FT. Those who were non-Hispanic White, Hispanic, or multiple races (compared to non-Hispanic Black), and who reported lower income, less education, and being less than one year since their cancer diagnosis had greater odds of reporting FT. Individuals with any level of FT were also more likely to report postponing medical visits (Adjusted Odds Ratio [OR] 2.58; 95% Confidence Interval [CI] 1.45-4.58), suboptimal medication adherence (Adjusted OR 5.05; 95% CI 2.77-9.20) and postponing supportive care and/or psychosocial support services (Adjusted OR 4.16; 95% CI 2.53-6.85) compared to those without FT. CONCLUSIONS: With increases in the number of people living longer with metastatic cancer and the rising costs of therapy, there will continue to be a need to systematically screen and intervene to prevent and mitigate FT for these survivors.

Palliative Intent Treatment and Palliative Care Delivery for Individuals With Advanced Nonsmall Cell Lung Cancer and Melanoma: A Patterns of Care Study.

Introduction: This study aimed to describe the patterns of palliative intent treatment and/or palliative care (PC) delivery among a population-based sample of individuals diagnosed with advanced nonsmall cell lung cancer (NSCLC) or advanced melanoma. Methods: Data from 655 advanced-stage melanoma patients and 2688 advanced-stage NSCLC patients included in the National Cancer Institute's 2017/2018 Patterns of Care study were analyzed. Bivariate and multivariate logistic regression analyses examined factors associated with (1) receipt of PC (including palliative surgery, radiation, and/or systemic therapy after cancer diagnosis, and PC consultations); and (2) timing from diagnosis to receipt of PC. Proportional hazards models also examined factors associated with timing of receipt of PC after diagnosis. Results: A total of 23.5% of those with melanoma and 52.6% of those with NSCLC received some type of PC. For melanoma, stage 4 (vs. stage 3) was associated with higher receipt of PC and receipt within three months of diagnosis. For NSCLC, stage 4 (vs. stage 3) and a diagnosis of depression or psychosocial distress within three months of diagnosis were significantly associated with receipt of PC and receipt within three months of diagnosis. Conclusion: Study findings indicate that those with advanced-stage cancer or who report distress are more likely to receive palliative intent treatment and/or PC. Given that individuals with advanced cancers are living longer and often experience long-lasting symptoms, it is critical to identify and overcome barriers for broadly delivering comprehensive palliative and supportive care.

Survivorship science at the National Institutes of Health 2017-2021.

PURPOSE: To describe the characteristics of National Institutes of Health (NIH) cancer survivorship grants funded over the past 5 years and identify gap areas for future efforts and initiatives. METHODS: Research project grants (RPG) funded during Fiscal Year (FY) 2017 to 2021 focused on cancer survivorship were identified using a text mining algorithm of words from the NIH Research, Condition, and Disease Categorization (RCDC) thesaurus with survivorship-relevant terms. The title, abstract, specific aims, and public health relevance section of each grant were reviewed for eligibility. Grants meeting the eligibility criteria were double coded to extract study characteristics (e.g., grant mechanism, study design, study population). RESULTS: A total of 586 grants were funded by 14 NIH Institutes from FY2017 to FY2021, and the number of newly funded grants increased each FY, from 68 in 2017 to 105 in 2021. Approximately 60% of all grants included an intervention study, and interventions most often focused on psychosocial or supportive care (32.0%). The most common primary focus of the grants was late- and long-term effects of cancer treatment (46.6%), and least often financial hardship. CONCLUSIONS: The results of this portfolio analysis indicate overall growth in the number and breadth of grants over the last five years, although notable gaps persist. IMPLICATIONS FOR CANCER SURVIVORS: This review of current NIH grants suggests a need for expanded research to understand and address survivor needs to ensure that the over 18 million cancer survivors in the United States have optimal quality of life and health outcomes.

Association of Patient Experience of Care and Radiation Therapy Initiation Among Women With Early-Stage Breast Cancer.

PURPOSE: For women diagnosed with early-stage breast cancer, lumpectomy followed by radiation therapy (RT) has been a guideline-recommended treatment. However, lumpectomy followed by hormonal therapy is also an approved treatment for certain women. It is unclear what patient-driven factors are related to decisions to receive RT. This study examined relationships between patient-reported experience of care, an important dimension of health care quality, and receipt of RT after lumpectomy. METHODS AND MATERIALS: We used National Cancer Institute Surveillance, Epidemiology, and End Results data linked to the CMS Medicare Consumer Assessment of Healthcare Providers and Systems patient surveys (SEER-CAHPS) to examine experiences of care among women diagnosed with local/regional stage breast cancer 2000 to 2017 who received lumpectomy, were enrolled in fee-for-service Medicare, completed a CAHPS survey ≤18 months after diagnosis, and survived for this study period. Experience of care was assessed by patient-provided scores for physicians, doctor communication, care coordination, and other aspects of care. Multivariable logistic regression models assessed associations of receipt of external beam RT with care experience and patient sociodemographic and clinical characteristics. RESULTS: The study population included 824 women; 655 (79%) received RT. Women with higher experience of care scores for their personal doctor were significantly more likely to have received any RT (odds ratio [OR], 1.18; P = .033). Nonsignificant trends were observed for associations of increased RT with higher CAHPS measures of doctor communications (OR, 1.15; P = .055) and care coordination (OR, 1.24; P = .051). In contrast, women reporting higher scores for Part D prescription drug plans were significantly less likely to have received RT (OR, 0.78; P = .030). CONCLUSIONS: Patient experience of care was significantly associated with receipt of RT after lumpectomy among women with breast cancer. Health care organization leaders may want to consider incorporating experience of care into quality improvement initiatives and other activities that aim to improve patient decision-making, care, and outcomes.

An analysis of survivorship care strategies in national cancer control plans in Africa.

PURPOSE: In 2017, the World Health Organization urged member states to develop and implement national cancer control plans (NCCPs) and to anticipate and promote cancer survivor follow-up care, which is a critical yet often overlooked component of NCCPs. This study aims to examine the inclusion of cancer survivorship-related strategies and objectives in NCCPs of African countries. METHODS: Independent reviewers extracted strategies, objectives, and associated indicators related to survivorship care from 21 current or recently expired NCCPs in African countries. Building on a similar analysis of the US state cancer control plans, reviewers categorized these strategies according to an adapted version of the ten recommendations for comprehensive survivorship care detailed in the 2006 National Academy of Medicine report. RESULTS: A total of 202 survivorship-related strategies were identified, with all NCCPs including between 1 and 23 references to survivorship. Eighty-three (41%) strategies were linked to measurable indicators, and 128 (63%) of the survivorship-related strategies were explicitly focused on palliative care. The most frequent domains referenced were models of coordinated care (65 strategies), healthcare professional capacity (45), and developing and utilizing evidence-based guidelines (23). The least-referenced domains were survivorship care plans (4) and adequate and affordable health insurance (0). CONCLUSIONS: The results of this study indicate that survivorship objectives and strategies should extend beyond palliative care to encompass all aspects of survivorship and should include indicators to measure progress. IMPLICATIONS FOR CANCER SURVIVORS: Stakeholders can use this baseline analysis to identify and address gaps in survivorship care at the national policy level.

Childhood Cancer Information-Seeking: Findings from the National Cancer Institute's Cancer Information Service.

The benefits of cancer information-seeking may be particularly salient to individuals impacted by childhood cancer, including patients, caregivers, health professionals, and advocates. The purpose of this study was to explore information-seeking patterns for childhood cancer through the National Cancer Institute's Cancer Information Service (CIS), a multi-channel, bilingual resource for cancer information. The study team conducted descriptive analyses on secondary data characterizing 1820 caregivers, health professionals, organizations, and members of the general public who contacted the CIS about childhood cancer between September 2018 and June 2022. Almost 80% of inquiries about childhood cancer were initiated by caregivers, followed by the public, health professionals, and organizations. Although English was the primary language used by individuals to reach the CIS when discussing childhood cancer, there were variations in points of access (i.e., telephone, instant messaging, email, social media) across the four user groups. Most childhood cancer inquiries were about staging and treatment, and the primary cancer sites discussed by CIS users were neurologic or brain, hematologic, and musculoskeletal cancers. Discussion topics included managing and coping with cancer, clinical trials, and treatment side effects. Just over half (54%) of CIS contacts about childhood cancer resulted in a health professional referral. Findings provide direction for the CIS and other public health organizations to deliver, prioritize, and tailor their services to support the information needs of childhood cancer survivors and their families-as well as those who care and advocate for them-who may have a significant need for credible cancer information.

A mixed methods evaluation of the unmet needs of early-onset colorectal cancer survivors.

PURPOSE: The incidence of colorectal cancer (CRC) is rising in people under age 50 (early-onset). Early-onset survivors face CRC during a critical point in their lives; many are establishing their families and careers. We sought to identify the unmet needs in a sample of early-onset CRC survivors and the resources they desired to address those needs. METHODS: We conducted a mixed methods study where participants completed the Cancer Survivors Unmet Needs (CaSUN) survey and a subsequent qualitative interview to expand on their unmet needs and desired resources. RESULTS: A total of 12 CRC survivors participated and 83% identified at least one unmet need, with an average of 13 unmet needs reported. Unmet needs were identified across every domain of the CaSUN measure, most commonly in the existential survivorship domain. Qualitative results demonstrated that survivors need more resources tailored for people their age and additional support for their families, including young children. CONCLUSION: Early-onset CRC survivors' needs are framed by the stage of their lives in which they are diagnosed, and the demand for interventions to support these survivors will continue to rise. The results of this study can inform future, tailored interventions for early-onset CRC survivors with substantial needs.

Estimation of the Number of Individuals Living With Metastatic Cancer in the United States.

BACKGROUND: The purpose of this study was to estimate the number of individuals living with metastatic breast, prostate, lung, colorectal, or bladder cancer or metastatic melanoma in the United States using population-based data. METHODS: A back-calculation method was used to estimate the number of individuals living with metastatic cancer for each cancer type from US cancer mortality and survival statistics from the Surveillance, Epidemiology, and End Results registries. The percentages of those living with metastatic cancer who advanced to metastatic disease from early stage cancer vs who were diagnosed with metastatic cancer de novo were calculated. One- and 5-year relative survival rates for de novo metastatic cancer were compared by year of diagnosis to assess time trends in survival. RESULTS: It is estimated that, in 2018, 623 405 individuals were living with metastatic breast, prostate, lung, colorectal, or bladder cancer, or metastatic melanoma in the United States. This number is expected to increase to 693 452 in 2025. In 2018, the percentage of metastatic cancer survivors who were initially diagnosed with early stage cancer and advanced to metastatic cancer ranged from 30% for lung cancer to 72% for bladder cancer. CONCLUSIONS: This study demonstrates increasing numbers of individuals living with metastatic cancer of the 6 most common cancer types in the United States. This information is critical for informing the allocation of research efforts and healthcare infrastructure needed to address the needs of these individuals.

Associations between mental health and care experiences among older adults with cancer.

OBJECTIVE: We sought to understand whether people with cancer who received mental health services reported different care experiences than those who did not. METHODS: We used Surveillance, Epidemiology, and End Results (SEER)-Consumer Assessment of Health Providers and Systems (CAHPS) linked data to identify Medicare beneficiaries aged 66 and over diagnosed with solid tumor malignancies between 8/2006 and 12/2013. We identified mental health services using claims spanning 12 months before cancer diagnosis through up to 5 years afterward. Outcomes were care experience ratings (e.g., Overall Care) and composite measures (e.g., Doctor Communication). We estimated frequentist and Bayesian regression models adjusted for standard confounders, including sociodemographics, general and mental health status (MHS), and other characteristics. Models included interaction terms to understand whether mental healthcare changes self-reported experiences for individuals with adverse MHS. RESULTS: Approximately 22% (n = 4998 individuals with cancer) had a mental health disorder claim; 17% of these reported fair/poor MHS versus only 7% of those in the cancer-only cohort (without a mental health disorder claim). Before adjusting for mental healthcare utilization and case-mix, worse MHS was associated with worse care experiences (p < 0.001 for all six measures). After accounting for mental health disorder-related healthcare utilization and case mix, multivariable regression models showed no associations between MHS and worse care experiences. CONCLUSIONS: Care for mental health disorders mediates the association between MHS and perceived care experiences. The results suggest that mental health treatment may improve the self-reported experiences of care for older adults with cancer and adverse mental health issues.

Associations between illness burden and care experiences among Medicare beneficiaries before or after a cancer diagnosis.

INTRODUCTION: To understand associations between a new measure of illness burden and care experiences in a large, national sample of Medicare beneficiaries surveyed before or after a cancer diagnosis. MATERIALS AND METHODS: The SEER-CAHPS Illness Burden Index (SCIBI) was previously developed using Surveillance, Epidemiology, and End Results (SEER)-Consumer Assessment of Healthcare Providers and Systems (CAHPS) linked data. The SCIBI provides a standardized morbidity score based on self- and other-reported information from 8 domains and proxies relative risk of 12-month, all-cause mortality among people surveyed before or after a cancer diagnosis. We analyzed a population of Medicare beneficiaries (n = 116,735; 49% fee-for-service and 51% Medicare Advantage [MA]; 73% post-cancer diagnosis) surveyed 2007-2013 to understand how their SCIBI scores were associated with 12 different care experience measures. Frequentist and Bayesian multivariable regression models adjusted for standard case-mix adjustors, enrollment type, timing of cancer diagnoses relative to survey, and survey year. RESULTS AND DISCUSSION: SCIBl scores were associated (P < .001) in frequentist models with better ratings of Health Plan (coefficient ± standard error: 0.33 ± 0.08) and better Getting Care Quickly scores (0.51 ± 0.09). In Bayesian models, individuals with higher illness burden had similar results on the same two measures and also reported reliably worse Overall Care experiences (coefficient ± posterior SD: -0.17 ± 0.06). Illness burden may influence how people experience care or report those experiences. Individuals with greater illness burdens may need intensive care coordination and multilevel interventions before and after a cancer diagnosis.

Examination of prostate-specific antigen (PSA) screening in military and civilian men: analysis of the 2018 behavioral risk factor surveillance system.

PURPOSE: To determine whether military men report different prostate-specific antigen (PSA) screening rates than civilian men and if shared decision-making (SDM) is associated with PSA screening. METHODS: We used data from the 2018 Behavioral Risk Factor Surveillance System and included 101,901 men (26,363 military and 75,538 civilian men) in the analysis conducted in 2021. We conducted binomial logistic regression analyses to determine covariate-adjusted associations between military status and receiving a PSA test in the last 2 years. We then added patient reports of SDM to the model. Finally, we looked at the joint effects of military status and SDM on the receipt of a PSA test in the last 2 years. RESULTS: Military men had 1.1 times the odds of PSA testing compared to civilian men (95% CI 1.1, 1.2) after adjusting for SDM and sociodemographic and health covariates. When examining the joint effect of military status and SDM, military and civilian men had over three times the odds of receiving a PSA test in the last 2 years if they had reported SDM (OR 3.5 and OR 3.4, respectively) compared to civilian men who did not experience SDM. CONCLUSION: Military men are slightly more likely to report receiving a PSA test in the last 2 years compared to civilian men. Additionally, results show SDM plays a role in the receipt of a PSA test in both populations. These findings can serve as a foundation for tailored interventions to promote appropriate SDM for PSA screening in civilian, active duty, and veteran healthcare systems.