Preparedness for caring of cancer survivors: A multi-institutional study of medical students and oncology fellows

Background. Despite recent advances in cancer survivorship knowledge and care, most medical schools lack a comprehensive survivorship curriculum, potentially leaving students ill-prepared for caring of survivors. Methods. A total of 211 students and 22 oncology fellows in 3 institutions completed a questionnaire assessing knowledge and experience in survivorship care. Results. Medical students and oncology fellows lack knowledge in key survivorship issues. Students were exposed to cancer survivors frequently in medical school but only half received instruction or practiced critical components of survivorship care. Conclusions. Improvement of both undergraduate and postgraduate training in survivorship care is urgently warranted.     

Transitioning childhood cancer survivors to adult‐centered healthcare: insights from parents,adolescent, and young adult survivors

Objective: To determine Latino adolescent and young adults (AYA) cancer survivors' perceived barriers or facilitators to transition from pediatric to adult‐centered survivorship care and to also assess the parents' perspective of care. Methods: Partnering with a community‐based organization that serves Latino survivors, we conducted a qualitative, constant comparative analytic approach exploring in‐depth themes that have salience for Latino pediatric cancer survivors seeking care in the adult healthcare setting. Twenty‐seven Latino AYA survivors (?15 years of age) completed key informant interviews and 21 Latino parents participated in focus groups. Results: Both AYA survivors and parents identified two major facilitative factors for survivorship care: Involvement of the nuclear family in the AYA's survivorship care in the adult healthcare setting and including symptom communication in late effects discussions. Barriers to care included: perceived stigma of a cancer history and continued emotional trauma related to discussions about the childhood cancer experience. Conclusions: Barriers to survivorship care include cancer stigma for both patient and nuclear family, which can impact on seeking survivorship care due to constraints placed on discussions because it remains difficult to discuss ‘cancer’ years later. Future research can evaluate if these findings are unique to Latino childhood cancer survivors or are found in other populations of AYA cancer survivors transitioning to adult‐centered healthcare. This community‐based participatory research collaboration also highlights the opportunity to learn about the needs of childhood cancer survivors from the lens of community leaders serving culturally diverse populations. Copyright © 2010 John Wiley & Sons, Ltd.     

In their own words: A qualitative study of the psychosocial concerns of posttreatment and long-term lung cancer survivors

ABSTRACT

Although lung cancer is the deadliest type of cancer, survival rates are improving. To address the dearth of literature about the concerns of lung cancer survivors, the authors conducted 21 in-depth interviews with lung cancer survivors that focused on experiences during diagnosis, treatment, and long-term survivorship. Emergent themes included feeling blamed for having caused their cancer, being stigmatized as throwaways, and long-term survivors' experiencing surprise that they are still alive, given poor overall survival rates. Survivors also desired increased public support. It is imperative for healthcare and public health professionals to learn more about needs of this population.     

Barriers to seeking cancer information among Spanish-speaking cancer survivors

Background. Hispanics face barriers in seeking cancer information from sources such as the National Cancer Institute’s Cancer Information Service. Their cancer screening rates are lower than those for whites. Methods. Three focus groups were conducted with 40 Spanish-speaking cancer survivors. Results. Few patients had used a toll-free telephone number to get cancer information. Only five had used the Internet. Fear of feeling worse was a common concern in seeking cancer information, as was trying to discuss their cancer in English. Spanish language media promotions were recommended. Conclusions. Beliefs and attitudes about cancer must be taken into account when developing culturally competent education programs for Spanish speakers.     

Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care

Background  This study describes the information needs of adult cancer survivors, identifies sociodemographic, health, and healthcare-related factors associated with information needs, and examines the relationship between information needs and survivors’ perceived mental and physical health. Methods  One thousand forty survivors 2–5 years post-diagnosis who were identified via two cancer registries were included in the present analysis. Self-report questionnaires assessed six categories of information needs, sociodemographic, health, and healthcare-related variables, and perceived mental and physical health. Results  Information needs were prevalent and varied; most survivors need more information about tests and treatments, health promotion, side effects and symptoms, and interpersonal and emotional issues. Multivariate analyses suggested that survivors who were younger, who reported non-White race/ethnicity, who reported less than excellent quality of follow-up cancer care, and who had more comorbid health conditions had more information needs. After adjustment for sociodemographic and health-related variables, more information needs were associated with worse perceived mental and physical health. Conclusions  Most cancer survivors needed more information about maintaining good health outcomes during survivorship. Health communication interventions, such as Survivorship Care Plans, have excellent potential to address survivors’ information needs while improving quality of follow-up cancer care and health-related quality of life.     

Coverage of cancer in local television news

Background. The news media provide significant health information to the American public. Although the public turns to and trusts local television news, news about cancer has not been systematically examined. Methods. In this content analysis, we examined 40,112 news stories aired in the 3rd, 25th, 87th, and 150th sized market in the country, all located in the Midwest. Results. In total, 386 stories focused on cancer. News stories about cancer were short and occurred less than once for every 30 minutes of news. The amount of news coverage of specific cancer sites was not consistent with cancer incidence rates. Similarly, the demography of cancer patients featured in the news differed from that in real life. Few stories provided follow-up information. The average story required a 10th-grade education to be understood. Differences across markets were not systematically related to market size. Conclusions. Cancer coverage was scattered and abbreviated. For both cancer practitioners as well as the general public, local television news cannot be counted on as a primary vehicle for cancer information.     

Health care use during cancer survivorship: Review of 5 years of evidence

Improvements in treatment strategies have resulted in increasing survival rates among patients diagnosed with cancer but also result in a growing population of individuals who have greater health care needs. These needs will persist from diagnosis throughout the continuing phase of care, or the survivorship phase. To better define models of survivorship care, there must be a strong evidence base in survivor health care use patterns. The objective of this review, which covers studies from 2012 to January 2018, was to evaluate the available evidence on patterns of health care visits among survivors of adult cancers and to understand what is known about the rate of health care visits, the physician specialties associated with these visits, and/or the types health care settings (eg, outpatient, emergency room). The findings underscore the importance of primary care, with the majority of studies reporting that >90% of survivors visited a primary care provider in the prior year. Visits to oncologists and/or other physician specialties were positively associated with receiving cancer screenings and obtaining quality care for noncancer-related conditions. High care density/low care fragmentation between physician specialties had lower costs and a lower likelihood of redundant health care utilization. The follow-up in almost all studies was 3 years, providing short-term evidence; however, as the survivorship period lengthens with improved treatments, longer follow-up will be required. The long-term patterns with which survivors of cancer engage the health care system are critical to designing long-term follow-up care plans that are effective in addressing the complex morbidity that survivors experience.     

Follow-up Care Education and Information: Identifying Cancer Survivors in Need of More Guidance

Cancer survivors engage in cancer screenings and protective health behaviors at suboptimal rates despite their increased risk for future illness. Survivorship care plans and other educational strategies to prepare cancer survivors to adopt engaged roles in managing long-term follow-up care and health risks are needed. In a sample of cancer survivors, we identified patient characteristics and psychosocial predictors associated with increased follow-up care informational needs. Cross-sectional surveys were administered to early-stage breast and prostate survivors (N?=?278; 68 % breast) at least 2 years post treatment from four community hospital programs in New Jersey between May 2012 and July 2013. Patient demographics, medical history, psychosocial characteristics (i.e., worries about the future, fear of disease recurrence, and patient activation), and perceptions of oncology and primary care were assessed. African-American survivors (AOR?=?2.69, 95 % confidence interval [CI] 1.27–5.68) and survivors with higher comorbidity (AOR?=?1.16, CI 1.01-1.33) were more likely to want additional information to guide follow-up care. Adjusting for race and comorbidities, survivors who wanted more information to guide their follow-up care reported greater worries about the future (p?<?0.05) and fears about disease recurrence (p?<?0.05) compared to those who did not want additional information. Results emphasize the need to develop cancer survivorship educational strategies that are both responsive to the needs of specific populations (e.g., African-American survivors and patients with multiple comorbidities) and the psychosocial profiles that motivate requests for more extensive follow-up guidance.     

Utilization of Internet-Based Survivorship Care Plans by Lung Cancer Survivors

BackgroundPersons living after lung cancer remain an important subset of the cancer survivor population who may be at risk for serious health consequences of lung cancer and its treatments. The Institute of Medicine recommends survivorship care plans for all cancer survivors.Materials and MethodsA program for the creation of survivorship care plans, OncoLife, was made publicly accessible. Users responded to queries regarding demographics, diagnosis, and treatment and received comprehensive, individualized guidelines for future care addressing issues such as late toxicity, second malignancy, fertility, and tumor recurrence. Data were maintained anonymously with approval from the Institutional Review Board.ResultsFrom May 2007 to November 2008, 3343 individuals completed OncoLife surveys. Lung cancer survivors comprised 4% (n = 142), with a median age at diagnosis of 57 years and median current age of 59 years. Lung cancer survivors were 50% male and 83% Caucasian. Chemotherapy was used in the treatment of 78% of patients with lung cancer, radiation was used in 58%, and surgery was used in 38%. Most lung cancer survivors (62%) reported receiving follow-up care from only an oncologist, while 27% reported being monitored by a primary care provider (PCP) and an oncologist, and 6% saw only a PCP. Only 11% reported receiving survivorship information at the conclusion of therapy.ConclusionOncoLife represents the first Web-based program for the creation of survivorship care plans, and lung cancer survivors appear willing to use this type of tool. Most have received multimodality care, placing them at risk for treatment-related late effects. Most survivors do not report receiving routine care from a PCP, so attention to survivor healthcare needs by the oncology community is particularly important.     

Fear of cancer recurrence in lymphoma survivors: A descriptive study

Abstract

Objectives: Fear of cancer recurrence (FCR) is a common experience among cancer survivors and often persists after the termination of cancer treatments. The purpose of this paper was to evaluate FCR in survivors of Hodgkin’s and diffuse large B-cell lymphomas, given a high rate of survivorship in this patient population.

Research Approach: The parent study was a multi-site, cluster-randomized trial to assess a communication skills intervention: survivorship planning consultation (versus a time-attention control - wellness rehabilitation intervention) to promote transition to survivorship.

Participants & Methodological Approach: 199 patients enrolled in the study and completed a survivorship (or control) consultation one-month after receiving the news of their survivorship status; 141 of those patients (n?=?92 experimental arm, n?=?49 control arm) completed an interview at their 6-month follow-up consultation. In the interview, participants described frequency of FCR, causes of FCR, coping mechanisms, and specific things oncologists said to reduce FCR. Both qualitative and quantitative methods were utilized for analyzing participant responses.

Findings: The majority (88%) of participants reported experiencing FCR, with a higher number of participants in the experimental arm significantly more likely to endorse FCR compared to the control group participants. The main causes of FCR were having medical appointments and concerns about potential relapse and secondary cancers. Participants endorsed utilizing self-sufficient coping mechanisms. As well, participants reported that oncologists most frequently cited specific cure rates of lymphoma to reduce patients’ FCR.

Interpretation & Implications for Psychosocial Providers: Communication skills training programs should emphasize FCR in survivorship consultations.     

Understanding fragmentation of prostate cancer survivorship care: implications for cost and quality

BACKGROUND:

Cancer survivors are particularly prone to the effects of a fragmented health care delivery system. The implications of fragmented cancer care across providers likely include greater spending and worse quality of care. For this reason, the authors measured relations between increasing fragmentation of cancer care, expenditures, and quality of care among prostate cancer survivors.

METHODS:

A total of 67,736 patients diagnosed with prostate cancer between 1992 and 2005 were identified using Surveillance, Epidemiology, and End Results (SEER)‐Medicare data. Using the Herfindahl‐Hirschman Index and a measure of the average number of prostate cancer providers over time, patients were sorted into 3 fragmentation groups (low, intermediate, and high). The authors then examined annual per capita survivorship expenditures and a measure of quality (ie, repetitive prostate‐specific antigen [PSA] testing within 30 days) according to their fragmentation exposure using multinomial logistic regression.

RESULTS:

Patients with highly fragmented cancer care tended to be younger, white, and of higher socioeconomic status (all P < .001). Prostate cancer survivorship interventions were most common among patients with the highest fragmentation of care across providers (P < .001). After adjustment for clinical characteristics and prostate cancer survivorship interventions, higher degrees of fragmentation continued to be associated with repetitive PSA testing (13.6% for high vs 7.0% for low fragmentation; P < .001) and greater spending, particularly among patients not treated with androgen deprivation therapy.

CONCLUSIONS:

Fragmented prostate cancer survivorship care is expensive and associated with potentially unnecessary services. Efforts to improve care coordination via current policy initiatives, electronic medical records, and the implementation of cancer survivorship tools may help to decrease fragmentation of care and mitigate downstream consequences for prostate cancer survivors. Cancer 2011;. © 2011 American Cancer Society.     

Development of community plans to enhance survivorship from colorectal cancer: Community-based participatory research in rural communities

In 2002, 10.4% of the 10 million persons alive who have ever been diagnosed with cancer had colorectal cancer (CRC). Barriers, such as distance, terrain, access to care and cultural differences, to CRC survivorship may be especially relevant in rural communities. We tested the hypothesis that teams from rural cancer coalitions and hospitals would develop a Community Plan (CP) to enhance CRC survivorship. We used community-based participatory research and the PRECEDE–PROCEED model to train teams from rural cancer coalitions and hospitals in Pennsylvania and New York. We measured knowledge at three points in time and tested the change with McNemar’s test, corrected for multiple comparisons (p < 0.0167). We also conducted a qualitative review of the CP contents. Fourteen (93.3%) of the 15 coalitions or hospitals initially recruited to the study completed a CP. Knowledge in public health, sponsorship of A National Action Plan for Cancer Survivorship, and CRC survivorship and treatment increased. Teams identified perceived barriers and community assets. All teams planned to increase awareness of community assets and almost all planned to enhance treatment-related care and psychosocial care for the CRC survivor; 50% planned to enhance primary care and CRC screening. The study demonstrated the interest and ability of rural organizations to plan to enhance CRC survivorship, including linkage of CRC survivorship to primary care. Rural cancer coalitions and hospitals may be a vehicle to develop local action for A National Action Plan. Access to more comprehensive care for CRC cancer survivors in rural communities appears to be facilitated by the community-based initiative described and investigated in this study. Efforts such as these could be replicated in other rural communities and may impact the care and quality of life of survivors with many types of cancers. While access to health services may be increased through community-based initiatives, we still need to measure the impact of such initiatives on the long term health and well being of cancer survivors in rural locations.     

Survivorship care needs among LGBT cancer survivors

Objective: To better understand survivorship care needs among LGBT cancer survivors. Design: We administered an anonymous online survey. Sample: LGBT cancer survivors living in the United States. Methods: Participants were recruited via the National LGBT Cancer Project. The survey measured sociodemographic characteristics, social support, posttraumatic stress, and survivorship care needs. Results: Approximately 72% of our 114 participants were cisgender male and 87% were white. Almost all participants reported at least some unmet survivorship care needs (73%), with over half of participants reporting unmet psychological and sexuality care needs. Participants who reported their oncologist was not LGBT-competent had greater unmet needs (t(82) = 2.5, p = 0.01) and greater posttraumatic stress (t(91) = 2.1, p = 0.035). Conclusions: LGBT cancer survivors have significant unmet survivorship care needs, and lack of oncologist LGBT-competence is associated with unmet needs. Implications for Psychosocial Providers: Our results suggest the need for LGBT competency training for providers.     

Cancer Survivors’ Reported Discussions with Health Care Providers About Follow-Up Care and Receipt of Written Care Plans

Prior studies reveal gaps in cancer survivors’ discussions with health care providers about follow-up care and receipt of care plans; however, whether survivorship care planning may vary by cancer type is not known. We surveyed 615 survivors of breast, colorectal, prostate, lung cancer, and melanoma enrolled in three health plans to examine cancer survivors’ self-reported discussions of follow-up care, including the need for surveillance, late and long-term effects, emotional needs, and health behaviors. We assessed whether cancer survivors received a written treatment summary and post-treatment care instructions. Most (92%) survivors reported having a discussion about the need for surveillance; 75%, late and long-term effects; 69%, lifestyle and health behaviors; and 53%, emotional and social needs. Most (88%) reported receiving post-treatment care instructions and 47%, a treatment summary. While there was little difference among survivors’ receipt of surveillance or health behavior recommendations by cancer type (p = 0.85 and p = 0.66, respectively), discussions of late and long-term effects occurred among 82% of prostate, 78% of breast, 73% of melanoma, 72% of colorectal, and 67% of lung survivors (p = 0.06). Approximately half of survivors reported discussions of emotional needs, with modest differences by cancer type (p = 0.08). Our findings indicate that most patient-provider discussions cover information on surveillance, with less emphasis on late and long-term effects, lifestyle and health behaviors, and substantially less focusing on emotional and social needs. No or modest differences in discussions occurred by cancer type. Whether tailoring information to individual cancer survivor needs is beneficial should be examined.     

Are cancer survivors following the national comprehensive cancer network health behavior guidelines? An assessment of patients attending a cancer survivorship clinic

Purpose: Engaging in positive health behaviors post-treatment is important for cancer survivors' health. However, little is known about whether survivors are practicing health promoting behaviors. We aimed to explore whether survivors are meeting the recent health behavior guidelines set forth by the National Comprehensive Cancer Network (NCCN) and to examine associations between health behaviors and distress. Methods: Sixty-six survivors completed a cross-sectional questionnaire assessing health behaviors prior to an initial appointment at a survivorship care clinic. Information about sociodemographic, clinical, and psychosocial variables and six health behavior recommendations, including physical activity, sunscreen use, tobacco use, alcohol consumption, weight management, and annual primary care provider visits, was collected. Findings: Only 7.6% of survivors met all six NCCN health behavior guidelines. One in ten (10.6%) survivors had smoked a cigarette in the previous 30 days, and half did not use sunscreen regularly (50%), had an unhealthy body mass index (53%), and did not engage in >10 MET-h/week of physical activity (50%). Approximately 1 in 6 (15.1%) survivors reported drinking beyond the recommended limit, and a similar proportion had not seen a PCP in the previous year (27.3%). Clinically significant levels of distress (>5; range 0–10) on the NCCN distress scale were reported by 64.6% of survivors. Participants with clinical levels of distress were less likely to adhere to health behavior guidelines than those who were not distressed (p = .002). Conclusions: Overall, survivors engaged at a survivorship clinic did not meet the NCCN recommended health behavior guidelines. Implications for Psychosocial Providers or Policy: Survivors' health behaviors and distress should be assessed and intervened upon during survivorship care. Survivorship clinics may provide a unique forum in which to provide ongoing behavioral health counseling and psychosocial support for these patients.