Preparing professional staff to care for cancer survivors

Introduction Oncology health care professionals frequently lack the background to implement needed survivorship activities and follow-up care. The purpose of this project is to assist providers in the clarification and initiation of potentially durable changes in survivorship care by developing a health professional curriculum, recruiting participants, implementing the course, conducting course evaluation and following participants’ defined goals over time. Materials and methods The curriculum was developed based on recommendations from the Institute of Medicine Report-From Cancer Patient to Cancer Survivor—Lost in Transition. Three concepts were used to structure the course: cancer survivorship quality of life, changing practice via performance improvement, and principles of adult education. Expert faculty designed and implemented the curriculum and teaching methods using adult learning principles and an interactive approach. Competitively-selected, two-person interdisciplinary teams for the first course (July 12–15, 2006, Pasadena, California) were selected based on stated interests, three projected goals, and letters of commitment from administrators. Results Participants represented 52 cancer care settings from 28 states. Teams included Nurses (48.1%), Social Workers (20.7%), Physicians (18.8%), Directors/Administrators (6.6%), Psychologists (2.8%), and others (3%). The institutional barriers identified by teams were lack of survivorship knowledge (94 %), financial constraints (61%), lack of administrative support (6%), and staff philosophy that excluded survivorship (15%). Evaluation of content from the first course was consistently positive. Conclusions Dissemination of survivorship education for health care professionals stimulates participants to define and begin to implement goals for improving survivors’ care. Implications for cancer survivors A training program such as the one described provides professional knowledge regarding survivorship that has the potential to facilitate change in the health care that cancer survivors receive thus ideally improving long term health and well being.     

The contextual model of HRQoL: A paradigm for expanding the HRQoL framework

Cancer is the second leading cause of death in most US populations. Unfortunately, ethnic minority status is associated with increased later stage at diagnosis, greater incidence for many cancer sites, differential treatments, greater mortality and morbidity. The government and public health focus on health disparities, evident in several documents including Healthy People 2010, Unequal Treatment and the Nations Investment in Cancer Research, are spurring interest in research with ethnic minority populations. Research investigating the health-related quality of life (HRQoL) among ethnic minority cancer survivors is new and growing. However, there is a dearth of research that addresses theoretical frameworks in cross cultural research. In conducting research with diverse populations, appropriate theoretical grounding that is responsive to cultural and socioecological contexts must be considered. This paper will discuss the contextual model of HRQoL, a comprehensive framework developed to expand the traditional HRQoL framework to facilitate culturally and socioecologically responsive research. This model may provide a more comprehensive theoretical framework to investigate certain areas of health disparities and risk factors for poor outcomes in HRQoL research with cancer survivors.     

Low risk of hip fracture among elderly breast cancer survivors

PURPOSE: Prior research has shown that women with either osteoporotic fracture or low bone density are at a decreased risk of breast cancer. Little prior work has evaluated whether women with breast cancer are at a decreased risk of osteoporotic fracture. METHODS: We used data from the National Cancer Institute's Surveillance Epidemiology and End Results (SEER)-Medicare program to study the risk of hip fracture among elderly female Medicare beneficiaries with and without histories of breast cancer. Using the SEER file, we identified elderly women survivors of stage 0, I, or II breast cancer (N=5980) diagnosed between the ages of 55 and 64 years; using the Medicare 5% file, we identified elderly women without histories of cancer (N=23,165) from SEER regions. Using Medicare claims from 1993 through 1998, we followed women for hospitalization for hip fracture or death until December 31, 1998. RESULTS: We found the rate ratio of hospitalization for hip fracture for breast cancer survivors relative to comparison patients was 0.63 (95% CI: 0.43-0.94) after adjusting for age, race, socioeconomic status, geographic location, cohort entry year, and medical comorbidity. CONCLUSIONS: We conclude that survivors of early stage post-menopausal breast cancer are at significantly lower risk of hip fracture than women who do not have histories of breast cancer.     

Barriers to pain assessment and management in cancer survivorship

Introduction Healthcare providers frequently lack the knowledge and skills to provide optimal pain management for cancer survivors. Scientific evidence and clinical guidelines are lacking in the management of chronic, persistent pain in survivors. The purpose of this article is to describe pain-related issues of cancer survivors using case presentations of selected patients enrolled in a randomized trial to eliminate barriers to pain management. Materials and methods Case presentations were selected from a National Cancer Institute-funded study that utilizes patient and professional educational content derived from the clinical guidelines of the National Comprehensive Cancer Network. Case presentation criteria included a pain rating of ≥6 and diagnosis of Stage I, II, or III of the following cancers: breast, colon, lung, or prostate cancer. Cases are presented based on the study’s framework of patient, professional, and system-related barriers to optimal pain relief. Results Across all three case presentations, barriers such as fear of side effects from pain medications, fear of addiction, lack of professional knowledge of the basic principles of pain management, and lack of timely access to pain medications due to reimbursement issues are prevalent in cancer survivorship. Conclusions Chronic pain syndromes related to cancer treatments are common in cancer survivors. Patient, professional, and system-related barriers that are seen during active treatment continue to hinder optimal pain relief during survivorship. Implications for cancer survivors Healthcare providers must acknowledge the impact of chronic, persistent pain on the quality of cancer survivorship. Clinical as well as scientific efforts to increase knowledge in chronic pain management will improve the symptom management of cancer survivors. Supported by a grant from the National Cancer Institute R-01 CA115323.     

Challenges associated with longitudinal survivorship research: attrition and a novel approach of reenrollment in a 6-year follow-up study of older breast cancer survivors

Introduction  Breast cancer is the most common type of cancer among older women. The vast majority of women with breast cancer become long-term survivors. Methods  We selected a convenience sample of women with: (1) stage I–IIIa disease, (2) age 65-years or older, and (3) permission from physician to contact. Data were collected over 6-years of follow-up from consenting patients’ medical records, telephone interviews, and the National Death Index. Before year 4 of follow-up we attempted to relocate women lost to follow-up using a single protocol and when successful, invited them to reenroll in the study. In this secondary data-analysis, baseline characteristics were compared among subjects with continuous follow-up, those who reenrolled, died, or were lost to follow-up. Results  Among 660 subjects, 177 had complete follow-up, 182 reenrolled after a period of non-participation, 171 died, and 130 were lost to follow-up. No important differences were found between reenrolled women and those with continuous follow-up or those lost to follow-up. There were nominal differences in age and comorbidity among women lost to follow-up compared to those with complete follow-up. Discussion/Conclusions  This study highlights challenges in longitudinal research of cancer survivorship, specifically the potential benefit of reenrollment. Implications for cancer survivors  Our findings provide a novel and promising approach to surmount some of the challenges in longitudinal research aimed at enhancing knowledge and the overall cancer survivorship experience of older adults.     

EUROCOURSE lessons learned from and for population-based cancer registries in Europe and their programme owners: Improving performance by research programming for public health and clinical evaluation

Population-based cancer registries (CRs) in Europe have played a supportive, sometimes guiding, role in describing geographic variation of cancer epidemics and comparisons of oncological practice and preventive interventions since the 1950s for all types of cancer, separate and simultaneously. This paper deals with historical and longitudinal developments of the roughly 160 CRs and their programme owners (POs) that emerged since 1927 and accelerating since the late 70s especially in southern and continental Europe. About 40 million newly diagnosed patients were recorded since the 1950s out of a total of 100 million of whom almost 20 million are still alive and about 10% annually dying from cancer. The perception of unity in diversity and suboptimal comparability in performance and governance of CRs was confirmed in the EUROCOURSE (EUROpe against cancer: Optimisation of the Use of Registries for Scientific Excellence in research) European Research Area (ERA)-net coordination FP7 project of the European Commission (EU) which explored best practices, bottlenecks and future challenges of CRs. Regional oncologic and public health changes but also academic embedding of CRs varied considerably, although Anno 2012 optimal cancer surveillance indeed demanded intensive collaboration with professional and institutional stakeholders in two major areas (public health and clinical research) and five minor overlapping cancer research domains: aetiologic research, mass screening evaluation, quality of care, translational prognostics and survivorship. Each of these domains address specific study questions, mixes of disciplines, methodologies, additional data-sources and funding mechanisms. POs tended to become more and more public health institutes, Health ministries, but also comprehensive cancer centres and cancer societies through more and more funding at project or programme basis. POs were not easy to pin down because of their multiple, sometimes competitive (funding) obligations and increasing complexity of cancer surveillance. But they also rather seemed to need guiding principles for Governance of ‘their’ CR(s) as well as to appreciate value of collaborative research in Europe and shield CRs against unreasonable data protection in case of linkages. Despite access to specialised care related shortcomings, especially of survival cohort studies, European databases for studies of incidence and survival (such as ACCIS and EUREG on the one hand and EUROCARE and RARECARE on the other hand) have proved to be powerful means for comparative national or regional cancer surveillance. Pooling of comparable data will exhibit much instructive variation in time and place. If POs of CRs would consider multinational European studies of risk and prognosis of cancer more to serve their own regional or national interest, then progress in this field will accelerate and lead to more consistent funding from the EU. The current 20 million cancer survivors and their care providers are likely to appreciate more feedback.ConclusionMost CRs remain uniquely able to report on progress against cancer by studies of variation in incidence (in time and place), detection and survival, referral and treatment patterns and their (side) effects in unselected patients, the latter especially in the (very) elderly. Programming and profiling its multiple and diverse clinical and prevention research is likely to promote involvement of public health and clinical stakeholders with a population-based research interest, increasingly patient groups and licensed ‘buyers’ of oncologic services.     

Wellness Beyond Cancer Program: building an effective survivorship program

BackgroundThe Wellness Beyond Cancer Program (wbcp) was launched in 2012, first accepting patients with colorectal cancer (crc) and, subsequently, those with breast cancer (bca), with the aim of standardizing and streamlining the discharge process from our cancer centre. Patients are discharged either to the wbcp nurse practitioner or to their primary care provider (pcp). The program incorporates survivorship care plans (scps) and education classes; it also has a rapid re-entry system in case of recurrence. The objective of this paper is to describe the process by which a cancer survivorship program was developed at our institution and to present preliminary evaluation results.MethodsQualitative surveys were mailed to patients and pcps 1 year after patients had been referred to the wbcp. The surveys addressed knowledge of the program content, satisfaction on the part of patients and providers, and whether scp recommendations were followed. Questions were scored on the level of agreement with each of a list of statements (1 = strongly disagree to 5 = strongly agree).ResultsFrom March 2012 to November 2014, 2630 patients were referred to the wbcp (809 with crc, 1821 with bca). Surveys were received from 289 patients and 412 pcps. Patients and pcps gave similar scores (average: 4) to statements about satisfaction; pcps gave scores below 4 to statements about communication with the wbcp.ConclusionsAt 1 year after discharge, patients and pcps were satisfied with program content, but there is an opportunity to improve on communication and provision of cancer-specific information to the pcps. Using the wbcp to ensure a safe transition to the most appropriate health care provider, we have standardized the discharge process for crc and bca patients.     

Social support and breast cancer: A comparatory study of breast cancer survivors,women with mental depression,women with hypertension and healthy female controls

ObjectivesAmong breast cancer (BC) survivors, inadequate social support (SS) is associated with a significant increase in cancer-related mortality and reduction in quality of life (QoL). The aim of the study was to explore perceived SS during BC trajectory by comparing BC survivors, women with depression, women with arterial hypertension, and healthy female controls to each other, and to compare perceived balance of receiving and providing SS.Material and methodsThe data of ongoing prospective postal survey was linked with national health registries. Respondents with BC (n = 64), depression (n = 471), arterial hypertension (n = 841) and healthy controls (n = 6274) formed the study population. SS was measured by a Sarason's 6-item shortened version of the Social Support Questionnaire (SSQ). The modified Antonucci's (1986) social support convoy model of the network of individuals was used to measure the dominating direction of SS.ResultsThe main provider of SS for all participants combined was the spouse or partner (94.3%), close relative (12.0%) and friends (5.4%). In all groups, particularly in the BC and arterial hypertension group, spouse or partner was seen as the most important supporter. The group suffering from depression reported significantly less SS in each domain of appraisal (p < 0.001). In total, 24.6% of all respondents reported receipt dominance of SS.ConclusionSS is a well-known determinant of wellbeing. Our study lends support to the spouse's or the partner's central role during the recovery phase of BC. Identification of factors improving the overall QoL of BC survivors is an important public health challenge.     

Feasibility,Acceptability, and Behavioral Outcomes from a Technology-enhanced Behavioral Change Intervention (Prostate 8): A Pilot Randomized Controlled Trial in Men with Prostate Cancer

BackgroundIncreasing evidence suggests that lifestyle factors may decrease the risk of prostate cancer progression. Lifestyle guidelines and tools may support lifestyle modification after diagnosis.ObjectiveTo determine the feasibility and acceptability of a digital lifestyle intervention among men with prostate cancer.Design, setting, and participantsA 12-wk pilot randomized controlled trial among 76 men with clinical stage T1–T3a prostate cancer. Eligibility included Internet access, no contraindications to aerobic exercise, and engaging in four or fewer of eight targeted behaviors at baseline.InterventionWebsite, Fitbit One, and text messaging to facilitate adoption of eight behaviors: vigorous activity, smoking cessation, and six diet improvements.Outcome measurements and statistical analysisOur primary outcomes were feasibility and acceptability based on recruitment and user data, and surveys, respectively. Secondarily, we evaluated the change in eight lifestyle behaviors, and also objective physical activity. Each factor was assigned one point, for an overall “P8 score” (range 0–8). Analysis of covariance (ANCOVA) was conducted. Exploratory outcomes included quality of life, anthropometrics, and circulating biomarkers after 12 wk, and behaviors after 1 yr.Results and limitationsAt baseline, men in both arms met a median of three targeted behaviors. Sixty-four men (n = 32 per arm) completed the study; 88% completed 12-wk assessments (intervention, 94%; control, 82%). Intervention participants wore their Fitbits a median of 82 d (interquartile range [IQR]: 72–83), replied to a median of 71% of text messages (IQR: 57–89%), and visited the website a median of 3 d (IQR: 2–5) over 12 wk. Median (IQR) absolute changes in the P8 score from baseline to 12 wk were 2 (1, 3) for the intervention and 0 (?1, 1) for the control arm. The estimated mean score of the intervention arm was 1.5 (95% confidence interval: 0.7, 2.3) higher than that of the control arm at 12 wk (ANCOVA p < 0.001). Changes were driven by diet rather than exercise. Limitations include self-reported diet and exercise data.ConclusionsOverall, in this novel pilot trial, the intervention was feasible and acceptable to men with prostate cancer. Next steps include improving the intervention to better meet individuals’ needs and focusing on increasing physical activity in men not meeting nationally recommended physical activity levels.Patient summaryTailored print materials combined with technology integration, including the use of a website, text messaging, and physical activity trackers, helped men with prostate cancer adopt healthy lifestyle habits, in particular recommended dietary changes, in the Prostate 8 pilot trial.