Background Cancer survivors represent a growing population, heterogeneous in their need for medical care, psychosocial support, and practical assistance. To inform survivorship research and practice, this manuscript will describe the prevalent population of cancer survivors in terms of overall numbers and prevalence by cancer site and time since diagnosis. Methods Incidence and survival data from 1975–2007 were obtained from the Surveillance, Epidemiology, and End Results Program and population projections from the United States (US) Census Bureau. Cancer prevalence for 2012 and beyond was estimated using the Prevalence Incidence Approach Model, assuming constant future incidence and survival trends but dynamic projections of the US population. Results As of January 1, 2012, approximately 13.7 million cancer survivors were living in the US with prevalence projected to approach 18 million by 2022. Sixty-four percent of this population have survived ≥ 5 years; 40% have survived ≥ 10 years; and 15% have survived ≥ 20 years after diagnosis. Over the next decade, the number of people who have lived ≥ 5 years after their cancer diagnosis is projected to increase approximately 37% to 11.9 million. Conclusions A coordinated agenda for research and practice is needed to address cancer survivors’ long-term medical, psychosocial, and practical needs across the survivorship trajectory. Impact Prevalence estimates for cancer survivors across the survivorship trajectory will inform the national research agenda as well as future projections about the health service needs of this population.
Background No studies have estimated the population-level burden of morbidity in individuals diagnosed with cancer as children (ages 0-19 years). We updated prevalence estimates of childhood cancer survivors as of 2011 and burden of morbidity in this population reflected by chronic conditions, neurocognitive dysfunction, compromised health-related quality of life and health status (general health, mental health, functional impairment, functional limitations, pain and fear/anxiety). Methods Surveillance Epidemiology and End Results Program data from 1975 to 2011 were used to update the prevalence of survivors of childhood cancers in the US. Childhood Cancer Survivor Study data were used to obtain estimates of morbidity burden indicators which were then extrapolated to SEER data to obtain population-level estimates. Results There were an estimated 388,501 survivors of childhood cancer in the US as of January 1, 2011, of whom 83.5% are ≥5 years post-diagnosis. The prevalence of any chronic condition among ≥5-year survivors ranged from 66% (ages 5-19) to 88% (ages 40-49). Estimates for specific morbidities ranged from 12% (pain) to 35% (neurocognitive dysfunction). Generally, morbidities increased by age. However, mental health and anxiety remained fairly stable and neurocognitive dysfunction exhibited initial decline and then remained stable by time since diagnosis. Conclusions The estimated prevalence of survivors of childhood cancer is increasing, as is the estimated prevalence of morbidity in those ≥5 years post-diagnosis. Impact Efforts to understand how to effectively decrease morbidity burden and incorporate effective care coordination and rehabilitation models to optimize longevity and well-being in this population should be a priority.
The health care delivery system in the United States is challenged to meet the needs of a growing population of cancer survivors. A pressing need is to optimize overall function and reduce disability in these individuals. Functional impairments and disability affect most patients during and after disease treatment. Rehabilitation health care providers can diagnose and treat patients' physical, psychological, and cognitive impairments in an effort to maintain or restore function, reduce symptom burden, maximize independence and improve quality of life in this medically complex population. However, few care delivery models integrate comprehensive cancer rehabilitation services into the oncology care continuum. The Rehabilitation Medicine Department of the Clinical Center at the National Institutes of Health with support from the National Cancer Institute and the National Center for Medical Rehabilitation Research convened a subject matter expert group to review current literature and practice patterns, identify opportunities and gaps regarding cancer rehabilitation and its support of oncology care, and make recommendations for future efforts that promote quality cancer rehabilitation care. The recommendations suggest stronger efforts toward integrating cancer rehabilitation care models into oncology care from the point of diagnosis, incorporating evidence-based rehabilitation clinical assessment tools, and including rehabilitation professionals in shared decision-making in order to provide comprehensive cancer care and maximize the functional capabilities of cancer
This study examined the extent to which cancer programs demonstrated adherence to their own prescribed screening protocol, and whether adherence to that protocol was associated with medical service utilization. The hypothesis is that higher rates of service utilization are associated with lower rates of adherence to screening protocols. Oncology social workers at Commission on Cancer-accredited cancer programs reviewed electronic health records (EHRs) in their respective cancer programs during a 2-month period in 2014. Rates of overall adherence to a prescribed distress screening protocol were calculated based on documentation in the EHR that screening adherence and an appropriate clinical response had occurred. We examined documentation of emergency department (ED) use and hospitalization within 2 months after the screening visit. Review of 8,409 EHRs across 55 cancer centers indicated that the overall adherence rate to screening protocols was 62.7%. The highest rates of adherence were observed in Community Cancer Programs (76.3%) and the lowest rates were in NCI-designated Cancer Centers (43.3%). Rates of medical service utilization were significantly higher than expected when overall protocol adherence was lacking. After controlling for patient and institutional characteristics, risk ratios for ED use (0.82) and hospitalization (0.81) suggest that when overall protocol adherence was documented, 18% to 19% fewer patients used these medical services. The observed associations between a mandated psychosocial care protocol and medical service utilization suggest opportunities for operational efficiencies and costs savings. Further investigations of protocol integrity, as well as the clinical care models by which psychosocial care is delivered, are warranted.
The results suggest that this method of intervention warrants further study as an educational delivery system for children with FAS.
To meet the complex needs of a growing number of cancer survivors, it is essential to accelerate the translation of survivorship research into evidence-based interventions and, as appropriate, recommendations for care that may be implemented in a wide variety of settings. Current progress in translating research into care is stymied, with results of many studies un- or underutilized. To better understand this problem and identify strategies to encourage the translation of survivorship research findings into practice, four agencies (American Cancer Society, Centers for Disease Control and Prevention, LIVE STRONG: Foundation, National Cancer Institute) hosted a meeting in June, 2012, titled: "Biennial Cancer Survivorship Research Conference: Translating Science to Care." Meeting participants concluded that accelerating science into care will require a coordinated, collaborative effort by individuals from diverse settings, including researchers and clinicians, survivors and families, public health professionals, and policy makers. This commentary describes an approach stemming from that meeting to facilitate translating research into care by changing the process of conducting research-improving communication, collaboration, evaluation, and feedback through true and ongoing partnerships. We apply the T0-T4 translational process model to survivorship research and provide illustrations of its use. The resultant framework is intended to orient stakeholders to the role of their work in the translational process and facilitate the transdisciplinary collaboration needed to translate basic discoveries into best practices regarding clinical care, self-care/management, and community programs for cancer survivors. Finally, we discuss barriers to implementing translational survivorship science identified at the meeting, along with future directions to accelerate this process.
BACKGROUND This study reports cancer‐treating institutions' capacity to deliver comprehensive psychosocial support services. METHODS Oncology care providers at 60 cancer‐treating institutions completed surveys assessing the capacity of their institutions to provide psychosocial care. Capacity was assessed with the Cancer Psychosocial Care Matrix (CPCM) from the National Cancer Institute (NCI). Scores represented individuals' perceptions of their cancer program's performance with respect to 10 fundamental elements of psychosocial care. RESULTS Among 2134 respondents, 62% reported a mid‐level capacity for ≥5 of 10 CPCM items. In comparison with other types of cancer programs (eg, NCI‐designated, academic, or comprehensive centers), providers at community cancer programs reported a significantly greater capacity with respect to patient‐provider communication, psychosocial needs assessment, and continuity in the delivery of psychosocial care over time. Nurses and primary medical providers reported a significantly lower capacity for linking patients and families with needed psychosocial services within their respective cancer programs. They also reported a significantly higher capacity for conducting follow‐up, re‐evaluations, and adjustments of psychosocial treatment plans. CONCLUSIONS Cancer programs are performing moderately well in terms of communicating to patients the importance of psychosocial care, identifying patient psychosocial needs, and referring patients and families to psychosocial services. They are doing less well with respect to the provision of that care over time. Findings suggest that gaps in psychosocial service capacity are a function of patient, provider, and system characteristics. These results may be useful in formulating strategies to enhance psychosocial care delivery. Cancer 2016;122:1937–45. © 2016 American Cancer Society.
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