bluuebunny/crossref_metadata_2025 huggingface dataset:
Community and health system partnership.
Authors: Harris Madeline G. , Di Piazza Rebecca M. , Tunagur Alia , Sellers Susan E. , Noles Kristen G. , Carpenter John T.
Published: March 2017

190

Background: Breast cancer survivors face physical, psychological, medical, social, cultural and spiritual challenges. Services to address these needs are frequently not available or if available unknown. We sought to determine whether formation of a community-based comprehensive breast cancer survivorship program was feasible. Methods: After months of relationship building, the Women’s Breast Health Fund of the Community Foundation of Greater Birmingham (CFGB), awarded funding to support a systematic assessment of available services in the region. Survivors, their loved ones, providers and other national models of care were surveyed and interviewed. Focus groups including a Lesbian, Bisexual, Gay, Transgender, Queer (LGBTQ) group were held. Aggregated results were presented in monthly meetings to executive level hospital administrators from all health systems in the area, the UAB School of Nursing and CFGB. Results: Survivors seek advice from other survivors more than any other source. Gaps in services exist. Breast cancer survivors were often unaware of existing services. Services were not available to some cultural/ethnic groups or loved ones; staff of some services were not culturally sensitive to the needs of survivors. Some services were available to all, while others require payment. There was no source of authoritative, evidence-based information on breast cancer survivorship except for a few providers. After 12 months the group of executives from all health systems committed to support the formation of a community-based comprehensive breast cancer survivorship program designed to assist breast cancer survivors, their loved ones and institutions by providing reliable information about services. Conclusions: Breast cancer survivors, providers, and local health systems all support the development of a comprehensive breast cancer survivorship program. We feel that it will address unmet needs of breast cancer survivors, allowing each institution to address needs for individual patients. By using the breast cancer survivorship program to assess individual needs and to provide information about services for identified needs, we expect repetitive services will be reduced and quality of life for breast cancer survivors will improve.
Psychosocial distress in lymphoma survivors at 3 years’ follow-up.
Authors: Rosenthal Allison Claire , Maurer Matthew John , Allmer Cristine , Ansell Stephen Maxted , Farooq Umar , Habermann Thomas Matthew , Link Brian K. , Witzig Thomas E. , Yost Kathleen J. , Cerhan James Robert , Thompson Carrie A.
Published: March 2017

193

Background: National standards recommend distress screening as part of cancer care. While many patients report improved quality of life after cancer treatment concludes there remains a population who experience ongoing anxiety and depressive symptoms. We sought to describe psychosocial distress in lymphoma survivors and frequency of visits to mental health providers (MHP). Methods: Lymphoma patients were prospectively enrolled within 9 months of diagnosis in the University of Iowa/Mayo Clinic SPORE Molecular Epidemiology Resource and systematically followed. Brief Profile of Mood States (POMS) and State Trait Anxiety Inventory (STAI) were administered 3 yrs after diagnosis. Lower scores on POMS indicated more distress. A higher score on STAI indicated more anxiety, and a score ≥ 40 was considered clinically significant. Pts were asked if they ever saw a MHP due to their lymphoma. Results: Between 2002-2012, 2465 lymphoma pts age 18-91 (10% 18-40, 54% 41-65, and 36% > 65) were enrolled, met survivor definition, and completed 3-yr POMS and STAI questionnaires. 57% were male. 40% had aggressive and 60% had indolent lymphoma. The median score on STAI 1 (state) was 32 (range 20-76) and on STAI 2 (trait) was 31 (range 20-77). Median POMS total mood disturbance (TMD) score was 88 (range 1-100). 8% of pts reported seeing a MHP. 609 pts (25%) had clinically significant anxiety by STAI 1, 73 (12%) of whom saw a MHP. Those who reported clinically significant anxiety on STAI were more likely to be younger, unemployed, unmarried, and less likely to have seen a MHP. Anxiety levels were similar between those with aggressive lymphoma and indolent lymphoma regardless of treatment. Higher distress levels, measured by TMD, were more often reported by those who were unemployed or over age 65 while there was no association with lymphoma subtype, marital status, or choice of therapy. Conclusions: Clinically significant anxiety was reported in 25% of 3-yr survivors of lymphoma and was associated with younger age, unmarried status, and unemployment. Higher distress levels were associated with older age, and unemployment. However, only 8% of our cohort was seen by a MHP. Identifying distress and appropriately referring to a MHP is important for the optimal care of lymphoma survivors.
Evaluating an educational intervention to alleviate distress among men with newly-diagnosed prostate cancer and their partners.
Authors: Hedden Lindsay , Wassersug Richard J , Mahovlich Sarah , Pollock Phil , Sundar Monita , Bell Robert H , Goldenberg Larry , Higano Celestia S.
Published: March 2017

194

Background: Diagnoses of cancer distress both patients and their partners. Providing accurate information about diagnosis and treatment options promotes active and informed decision-making and can decrease distress and anxiety. We sought to determine whether an education session alleviated distress for both prostate cancer (PC) patients and their partners, and whether their partner’s attendance at the session, as well as specific disease, treatment, and socio-demographic characteristics affect changes in distress levels. Methods: The session consists of a 90-minute didactic presentation, followed by an 8- to 10-minute private session with a urologist and radiation oncologist. We assessed distress using the Distress Thermometer (DT) and compared pre- and post-session distress, and change in distress between patients and partners using matched and unmatched t-tests. We also assessed before-the-session anxiety using the Generalized Anxiety Disorder measure (GAD), and decisional certainty using the Decisional Conflict Scale. Results: 71 patients and 48 partners participated in the study. Attending the session led to a significant reduction in median DT score for both patients (4.0 to 3.0, p = 0.0009) and partners (5.0 vs. 4.0, p = 0.0176). Partners reported higher distress both before and after the session compared to patients (4.9 vs. 3.8, p = 0.025 pre-session and 4.2 vs. 3.1, p = 0.032 post-session). The presence of a partner at the session did not appear to affect patients’ pre- or post-session distress nor the success of the session at alleviating distress. Sociodemographic and clinical characteristics had little effect on distress levels. Conclusions: Our study demonstrates that an interdisciplinary education session is equally effective at alleviating distress for both PC patients and their partners. These results can be used to guide the development of supportive care programs more broadly in terms of their ability to address the physiological and psychological needs of PC patients and their families.
PTSD and lymphoma: Two very different psychological trajectories following a common diagnosis.
Authors: Jacob Regina , Robbins Laura , Leonard John , Peterson Janey C
Published: March 2017

195

Background: Long-term chronic lymphoma survivors report lower quality of life compared to those who are cured of lymphoma, despite an equal prevalence of PTSD symptoms in both groups. Posttraumatic Growth (PTG), or positive psychological change following a traumatic event, has been associated with greater acceptance of the disease and greater quality of life, particularly because PTG has been shown to diminish the negative effects of PTSD symptoms. Methods: Semi-structured, in-person qualitative interviews were conducted among a convenience sample of lymphoma survivors. Participants answered questions about their emotional reactions after diagnosis, during treatment, and symptoms of PTSD and positive changes—if any—that developed during the cancer experience. Interviews were audiotaped, transcribed, and analyzed using Grounded Theory methodology. Results: 77 lymphoma survivors - 75% chronic lymphoma, 25% curable lymphoma completed interviews. Themes included 1) disease: perception of health; 2) support system: physician support, social support, and healthcare system support; 3) internal processing: acquiring knowledge, and coping mechanisms; 4) fear: stigma of cancer; 5) growth: relationship with others, and appreciation of life; and 5) acceptance: preparation, and death & dying. Most participants, regardless of chronic or curable diagnoses, reported distress during diagnosis and treatment within the categories: perception of health, healthcare system support, social support, and acquiring knowledge. Chronic lymphoma participants reported less fear and subsequently less growth than their curable counterparts. Participants further viewed their cancer as carrying a different stigma, which then resulted in these blunted reactions. Conclusions: Chronic lymphoma patients do not follow the same psychological trajectory as their curable counterparts with regards to long-term adjustment. They, instead, emulate patients with other chronic disease. The blunted psychological experience of both PTSD symptoms and PTG could potentially explain the lower reports of quality of life in the long term cancer survivor with indolent disease.
Will Chinese oncologists refer cancer survivors to psychological support for survivorship care? A cross-sectional survey.
Authors: Sun Lingyun , Yang Yufei , Wang Xia , Chen Dongmei , Mao Jun J.
Published: March 2017

196

Background: Cancer survivors often experience substantial psychological distress, such as anxiety and depression, due to cancer diagnosis and treatment. As psychological support is still not a standard part of survivorship care in China, little is known about Chinese oncologists’ attitudes towards referring cancer survivors to this service. Methods: We conducted a cross-sectional survey among oncologists who were attending the 18th annual meeting of Chinese Society of Clinical Oncology (CSCO, September 16th - 20th 2015) in Xiamen, China. Participants voluntarily completed a questionnaire measuring their demographics and occupational information. The outcome variable was willingness to refer cancer survivors to psychological support. We used a multivariate logistic regression model to evaluate the factors associated with such willingness. Results: Among 351 responders, 53% were male, with a mean age of 38±9 years. Half of the oncologists were senior attendings, 34% were junior attendings, and 17% were residents. More than half of the physicians (58%) had an additional Masters or PhD degree. The majority of oncologists (263, 79%) were willing to refer their patients to psychological support as part of survivorship care. Physicians over 40 years old were more likely to recommend psychological support than their younger colleagues (85% versus 76%, p = 0.048). In multi-variable logistic regression model, controlled by gender and education level, physicians > 40 years were associated with more willingness to refer their patients to psychological support than physicians ≤ 40 years (odds ratio [OR] 2.9, 95% confidential interval [C.I.]1.4-6.1, p= 0.01); compared to residents, junior attendings were more likely to recommend psychological support (OR 2.8, 95% C.I. 1.1-7.1, p= 0.03). Conclusions: The majority of Chinese oncologists were willing to refer cancer survivors for psychological support; age and position appeared to impact such willingness. By further educating young Chinese oncologists about the importance of psychological care during survivorship, we can help develop a health care delivery system that better meets Chinese cancer survivors’ psychosocial needs.
Institutional racism, segregation, and breast cancer outcomes.
Authors: Beyer Kirsten M. M. , Bemanian Amin , McGinley Emily L , Nattinger Ann B
Published: March 2017

199

Background: Racial breast cancer mortality disparities are significant vary in magnitude across the US, indicating that place-specific factors may influence mortality. Racism and segregation are widely considered to contribute to health disparities, and may influence breast cancer outcomes. Several pathways linking racism, segregation and health care outcomes have been proposed, including (1) stressors in the local environment, (2) social resources and opportunities, and (3) knowledge and information. Given these hypothesized pathways, it is possible that racism and segregation may also influence elements of the breast cancer diagnosis, such as stage at diagnosis and tumor characteristics. Methods: We examined the influence of measures of institutional racism (racial bias in mortgage lending) and segregation (the Location Quotient) on 4-year mortality after breast cancer diagnosis, stage at diagnosis, and hormone receptor status among a cohort of women diagnosed with breast cancer between 2007 and 2009, included in the SEER-Medicare linked database. Analyses focused on three metropolitan areas: Detroit (MI), Atlanta (GA), and Seattle (WA). Logistic regression analyses were used to predict the odds of each outcome, while controlling for a number of covariates: age, race and ethnicity, ER-/PR- status, diagnosis stage, enrollment in Medicaid, metropolitan area, marital status, diagnosis year, tumor size, histological type, and tumor grade. Results: Results indicate that institutional racism is associated with an increased odds of being diagnosed with an ER-/PR- tumor. No associations were detected for 4-year mortality or diagnosis stage, nor for the Location Quotient and any outcome. Conclusions: Researchers are currently exploring whether social conditions may influence tumor characteristics through pathways such as inflammation and comorbidities. Our results contribute to this growing body of work. Our results can also be interpreted in light of recent studies that identified an association between a different measure of segregation and ER-/PR- tumor type, and no association between census tract level SES and tumor type. Additional study of institutional racism, segregation and breast cancer outcomes is warranted.
Five-year overall survival among patients with metastatic renal cell carcinoma: Results of Russian population-based study RENSUR5.
Authors: Tsimafeyeu Ilya , Zolotareva Tatiana , Varlamov Sergey , Zukov Ruslan , Vladimirova Liubov Yu , Petkau Vladislav , Mazhbich Mikhail , Statsenko Galina , Safina Sufia , Zaitsev Igor , Sakaeva Dina , Popov Alexander , Borisov Pavel
Published: March 2017

20

Background: The results of the 5-year overall survival (OS) in patients with metastatic renal cell carcinoma (mRCC) has been reported rarely. The aim of the RENSUR5 registry study was to obtain real-world data on the use of therapies in mRCC and assess 5-year OS in Russian population. Methods: Patients were retrospectively identified at 11 cancer centers in different regions of Russia (Astrakhan, Barnaul, Ekaterinburg, Kazan, Krasnoyarsk, Obninsk, Omsk, Rostov-on-Don, Samara, St.Petersburg, Ufa). Patients were included if mRCC was diagnosed from January 2010 to January 2011. Anonymised data were collected through an online registry covering demographics, treatments and outcomes. Results: 439 adult mRCC patients were included in the study for analysis. Mean age at diagnosis of mRCC was 60.9 (33-90) years (with 9% of patients aged 375 years). Patients were predominantly male (70.2%), 67.7% had nephrectomy; clear-cell and non-clear cell tumors were detected in 61.1% and 7.7% of patients, respectively. 271 (62%) patients received systemic therapy. Median duration of therapy was 11 months (95% CI 9.5-12.5). The majority of treatment was with interferon only (n=145). 105 (23.9%) patients were treated with targeted therapy. 69 (15.7%) patients received 3 2 treatment lines. Survival outcomes are listed in Table. Conclusions: RENSUR5 is a large 'real-world' database assessing mRCC treatment patterns and 5-year OS in Russia. Based on results of this study, we assume that 5-year OS is poor and should be improved on novel therapies. [Table: see text]
Social network, social support and unplanned hospital admission in older patients with cancer.
Authors: Edwards Beatrice Jara-Almonte , Sun Ming , Fu Shuangshuang , Zhang Xiaotao , Markham Christine
Published: March 2017

201

Background: Cancer incidence is rising as the number of older adults increases. Lack of social support has been found to predict mortality among cancer patients. Emotional support has been reported to be the most desirable type of social support. Methods: The data was collected prospectively, and analysis conducted in a retrospective manner, in a cohort of older adults seen at the Program for Healthy Aging at the MD Anderson Cancer Center between Jan 2013 and December 2015. Demographics, cancer diagnosis, and other geriatric conditions were diagnosed and collected during comprehensive geriatric assessments. Social supports were measured through self-report RAND’s Medical Outcomes study (MOS) questionnaires. Overall social support and sub domains (emotional, informational, tangible, affectionate, and positive interaction) were scored. Outcomes including unplanned hospital admission were collected through reviewing of medical records. Pearson chi-square or the Fisher exact tests were used to compare groups on admission. Logistic regressions were used to investigate the relative contribution of social network and social supports for unplanned hospital admission. Results: Among 132 patients who were included in the analysis, 49(37%) patients had unplanned hospital admissions, and the overall social support score was 86%. Cancer type -hematologic versus solid tumors- demonstrated a stronger association with hospitalizations than social support. The subdomains of tangible support, positive interaction, and affection support were different between two groups. Tangible support had an odd ratio of 10.6 (p = 0.026) in unplanned hospital admission, after adjusting for cancer type, cancer stage, and cognitive status. In our study population, patients who receive more social support were more likely to be hospitalized. Conclusions: Among older cancer patients, those who receive more social support are more likely to be hospitalized. Further studies that correlate with health outcomes may be meaningful to develop strategies or interventions to improve clinical practices, to enhance quality of life and meaningful survival in elderly cancer patients.
Patient perspectives and treatment regret after de-escalated chemoradiotherapy for HPV-positive head and neck cancer: Findings from a phase II trial.
Authors: Shaverdian Narek , Hegde John , Felix Carol , Hsu Sophia , Garst Jordan , Basehart Vincent , Steinberg Michael L. , Chen Allen M.
Published: March 2017

212

Background: We present the first data evaluating overall treatment priorities, priorities specific to de-escalated therapy, treatment regret, and original expectations versus actual experiences among patients treated with de-escalated chemoradiation for human papillomavirus (HPV)-positive head and neck cancer (HNSCC). Methods: Participants were treated on a prospective phase II trial of induction chemotherapy followed by attenuated chemoradiotherapy for HPV-positive HNSCC. Eligible patients presented with stage III or IV squamous cell carcinoma of the oropharynx, p16-positivity, age ≥ 18 years, and Zubrod score 0-1. A total tumor dose of 60 Gy or 54 Gy was delivered depending on the response to induction chemotherapy. Participants were surveyed with validated measures evaluating their treatment experience. Results: Twenty-four out of 26 (92%) study patients participated with a median post-treatment follow-up of 20 months. 96% (n = 23) of participants selected ‘being cured’ or ‘living as long as possible’ to be their top priority. The highest-ranked priority with respect to treatment de-escalation was ‘to be able to swallow all foods and drinks’. No patient professed to any regret about the decision to enroll and be treated on a de-escalation protocol. 67% (n = 16) of participants reported long-term swallowing function to be either better than or as originally expected. 71% (n = 17) found long-term salivary function to be worse than expected. Overall, 63% (n = 15) of respondents found the severity of short-term side effects to be greater than expected, however, 63% (n = 15) of respondents found overall long-term toxicities to be less than originally expected. Conclusions: Among HPV-positive patients with HNSCC who had completed de-escalated therapy on a phase II protocol, cancer cure was the top overall priority, and preserving swallowing function was the highest priority for de-escalated therapy. No patient endorsed treatment regret, and the majority of patients found long-term swallowing outcomes to be better than or as originally expected. These data support ongoing studies aiming to establish the role of de-escalated therapies for HPV-positive HNSCC.
Association of spiritual well-being pre- and post-radiotherapy for prostate cancer with health-related quality of life and psychological state.
Authors: Walker Sara J , Chen Yiyi , Leatherwood Amy Eiko , Paik Kyungjeen , Mirly Brandy , Thomas Charles R. , Hung Arthur
Published: March 2017

214

Background: Cancer survivors often experience psychological stress, with impact on quality of life (QOL) and mortality. Religious/spiritual identity and well-being (WB) can also significantly relate to QOL among individuals with cancer. The specific aim of the current study investigates correlates of spiritual (WB), QOL, and psychological state before and after radiotherapy for prostate cancer (PC). We hypothesized that 1) positive correlations between pre-treatment spiritual WB and health-related QOL will be seen both time points and that 2) negative correlations between spiritual WB and depression and anxiety will be seen at both points. Methods: The PHQ-9 and GAD-7 assessed depression and anxiety, respectively. The FACT-P assessed physical, social, emotional, and functional WB. The FACIT-Sp-Ex assessed spiritual WB. Our sample ( N= 65) had mean age of 68 (range 52-81) and education of 16 years (range 10-20). Most participants (82%) identified as European-American. Associations were assessed by Pearson’s correlation coefficients. Results: Pre-treatment spiritual WB positively correlated with social, emotional, and functional well-being (all p < .001). Spiritual and physical WB were not significantly related. Spiritual WB negatively correlated with depression and anxiety (both p < .001). Among a smaller subsample ( N = 39) with pre-, mid-, and post-treatment assessment, spiritual WB significantly increased over time, p < .001. Post-treatment spiritual WB again correlated with social, emotional, and functional WB (all p < .001) and did not correlate with physical WB. Spiritual WB was again negatively correlated with anxiety ( p < 0.05), but it was no longer associated with depression. Conclusions: Assessing and addressing spiritual WB can be helpful in itself, as well as in better understanding QOL and psychological state. Future directions include more fine-grained assessment of pre- and post-treatment spiritual WB in order to better understand which aspects of religious/spiritual identity relate more or less closely to post-treatment QOL for different stages of PC.
Uncertainty about the future for patients with advanced cancer and their informal caregivers: A qualitative view.
Authors: Shilling Valerie M , Starkings Rachel , Jenkins Valerie A. , Fallowfield Lesley
Published: March 2017

218

Background: In the PROACT study, we developed two scales measuring wide-ranging life impacts of cancer and treatment for patients (pts) and caregivers (cgs). Qualitative work in the development phase produced rich data on the concerns of both groups. Here we explore one specific topic, uncertainty, and contrast pts' and cgs' experience. Methods: In-depth qualitative interviews with pts with advanced cancer and their informal cgs about the impact of extended cancer survival on broader aspects of life and well-being. Interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: We interviewed 24 pt-cg dyads with advanced ovarian (9) melanoma (9) or lung cancer (6). Pts were aged 39-84 (median 62 years), cgs 19-85 (median 54 years). Cgs were pts’ partners/spouses (15), children (5), siblings (2), and friends (2). 20 major themes and 33 sub-themes were identified. One concerned the uncertainty when planning for the future and encompassed issues such as providing for one’s family, employment and finances. For both groups uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans, resulting in a life lived day-by-day. Some felt it would be easier to have a definite timeframe (about death) and struggled with accepting that no one could predict what was going to happen and when. There were marked age effects. Differences existed between the groups: pts were concerned with their family’s emotional and financial wellbeing while cgs expressed a lack of control over their own futures and a sense of life "being on hold." These thoughts were often accompanied by guilt. Accounts from within the same dyad often differed and pts and cgs rarely discussed concerns with each other. Conclusions: Both pts and their informal cgs are challenged about coping with death but equally about coping with life and the lack of a defined trajectory. This impacted many areas including employment and general planning for the future. Dyads seldom discussed these concerns so might benefit from professional help aimed at facilitating open discussion together.
A preliminary evaluation of the TrueNTH androgen deprivation therapy educational program.
Authors: Wibowo Erik , Wassersug Richard J , Robinson John W , Matthew Andrew , McLeod Deborah L , Wilyman Shawn , Walker Lauren M
Published: March 2017

219

Background: Androgen deprivation therapy (ADT) is the most common systemic treatment for prostate cancer (PCa), but has many adverse effects that reduce patients’ quality of life and that of their partners. In 5 Canadian cities, we offer an educational program designed to help PCa patients and their partners manage ADT side effects as well as maintain a strong dyadic relationship despite changes that accompany ADT. Methods: Patients on or about to start ADT and their partners participate in a 1.5 hour educational session. Patients receive a copy of the 2014 book, Androgen Deprivation Therapy: An essential guide for men with prostate cancer and their partners (DEMOS Health, NY) which discusses how to manage ADT side effects and how to make effective lifestyle changes to maintain a good quality of life. To date, 358 patients and 220 partners have attended the ADT class. A subset (32%) of participants elected to complete questionnaires at baseline and again 2 to 3 months later to assess the program efficacy. Results: At the time of the ADT class, patients who have been on ADT for ≥ 2 months had more frequent side effects (e.g., hot flashes and breast tenderness), and were more bothered by hot flashes. They also reported worse self-efficacy for managing weight gain and diabetes than those who have been on ADT for < 2 months. However, at 2 to 3 months after the class, patients’ self-efficacy for managing ADT side effects improved, despite experiencing more side effects and more bother associated with those side effects. Notably, patients who were on ADT for a shorter duration (< 2 months), who have attended the class, had less bother associated with hot flashes and better self-efficacy for managing weight gain than those who had been on ADT longer before attending the class. Conclusions: The TrueNTH ADT Educational Program potentially dampens side effect bother and improves self-efficacy for two of the most troublesome adverse effects of ADT, hot flashes and weight gain respectively. The program is most beneficial when offered to patients just starting on ADT. Future analyses will focus on exercise behaviour and dyadic relationship to assess the program’s effectiveness in encouraging a healthy lifestyle and maintain strong dyadic bonds in the face of ADT.
Clinical trial enrollment and follow-up visit rates among survivors of childhood cancer.
Authors: Hutchins Kelley Kennedy , Savasan Sureyya , Thomas Ronald , Strathdee Laura , Taub Jeffrey Warren
Published: March 2017

22

Background: Childhood cancer treatment outcomes have improved substantially with five-year overall survival rates reaching greater than 80%. However, survivors are at increased risk of long-term complications, and long-term follow-up (LTFU) is critical. Distance from a cancer treatment center and increased time from completion of therapy have been associated with decreased LTFU rates. We studied whether lack of enrollment in a therapeutic clinical trial may be an additional barrier to receiving LTFU care. Methods: We conducted a retrospective review of 353 patient records at the Children’s Hospital of Michigan enrolled in our Children’s Oncology Group (COG) registry between 1/1/05-12/31/10. All patients were ≤ 25 years of age at diagnosis.Sixty-seven patients were excluded (died prior to follow-up, n = 61; still on therapy, n = 5; insufficient information, n = 1). A total of 286 patient charts were available for analysis after exclusion. One hundred sixty-two (57%) patients were enrolled in a therapeutic clinical trial, and 124 (43%) were enrolled in a biology study alone due to lack of an open therapeutic clinical trial at the time of diagnosis. One hundred eighty-six (65%) patients were < 10 years of age at diagnosis. Results: Follow-up rates at one-, two- and five-years following completion of therapy for patients enrolled in a therapeutic clinical trial were 94.5%, 91.9% and 74%, respectively, compared to 82.9% (p = 0.002), 74% (p < 0.001) and 66% (p = 0.029) for patients not enrolled. The follow-up rate at five-years for patients who were < 10 years of age was 77.5% compared to 70.7% (p = 0.007) for patients > 10 years. There was no significant difference at one- or two-years based on age at diagnosis. Conclusions: Our findings demonstrate that patients enrolled in a therapeutic clinical trial have significantly superior LTFU rates compared to patients enrolled in biology studies alone. Younger age at diagnosis demonstrated a superior rate at five-years of follow-up. Our findings suggest that additional resources/strategies must be utilized to ensure better LTFU for patients not enrolled in therapeutic clinical trials.
The humanistic burden of advanced non-small cell lung cancer on patients and their caregivers.
Authors: Taylor-Stokes Gavin , Wood Robert , Lees Michael , Malcolm Bill , Chirita Oana
Published: March 2017

220

Background: A diagnosis of advanced non-small cell lung cancer (aNSCLC) presents significant physical, emotional and financial challenges for patients and their caregivers. This study provides insight into the humanistic burden on patients and their caregivers, as the disease progresses. Methods: Data were taken from a chart review and a cross-sectional study of a NSCLC patients and caregivers in France, Germany and Italy. Physicians provided data on patients’ age, sex, stage, line of therapy and ECOG (Eastern Cooperative Oncology Group) performance status (PS). The patient survey assessed the patients’ health state (EQ-5D), impact on work/activities (WPAI) and on quality of life (EORTC QLQ-C30). The caregiver survey included the WPAI and Zarit Burden Interview (ZBI). Patient and caregiver outcomes were stratified by the patients’ ECOG PS from 0 to 4 (best to worst status). Statistical significance was assessed using Kruskal-Wallis tests. Results: 1,030 patients completed the survey (mean (SD) age: 64.5 years (10.1), 65.9% male); the majority were stage IV (88.4%) and most (70.5%) were receiving 1st line therapy. Caregiver forms were completed by 41.5% of patients’ caregivers; mean (SD) age: 53.5 years (12.5), 72.6% female; most were the patients’ partner (54.9%) or child (31.9%). In total, 19.4%, 43.5%, 27.4% and 9.7% of patients had a current ECOG PS of 0, 1, 2 or 3/4, respectively. All outcomes stratified by ECOG PS are reported below (all P < 0.0001). Conclusions: As patients’ functionality deteriorates, so do their outcomes relating to health utility, impairment and quality of life. This deterioration also increases the burden on the caregiver. This study was sponsored by Bristol-Myers Squibb. [Table: see text]
Cancer survivorship care in rural community: Provider perspective.
Authors: Noyes Katia , Holub David , Rizvi Irfan , Swanger Alex , Reisdorf Coty , Tomaszewski Kenneth , Constine Louis S.
Published: March 2017

50

Background: Advances in oncologic sciences have resulted in successful treatments for many cancers with improved survival for millions of patients. Efficient delivery of cancer care now requires not only skills and professionalism of each provider but also well-orchestrated performances of multiple oncology, primary care and social services providers acting as one multidisciplinary team. It is unknown, however, whether providers are prepared for and accept their new roles in patient cancer care teams across region. This study assessed perspectives of providers involved in care for patients with cancer about their changing roles. Methods: We conducted a focus group with a diverse group of stakeholders involved in cancer care (2 primary care physicians, 1 rural surgeon, 2 rural oncologists, 2 oncology nurses, 2 cancer patients and a caregiver). The focus group was conducted using ThinkTank software, a collaborative tool that allows participants to communicate virtually in real time, screen share, express preferences and confidentially rank each other responses. We also conducted two traditional focus groups with rural care managers, nurses, social workers and public health providers. Results: The focus groups identified significant differences in attitudes and beliefs toward regional team-based cancer care between various providers. PCPs ranked oncology issues as less important to their practices compared to other chronic conditions associated with performance metrics and financial incentives. APPs ranked care coordination issues as more important compared to PCP rankings from the same practices. Rural providers identified limited staffing, outdated health IT systems, and lack of expertise as major barriers to multidisciplinary team care. Both patients and providers highlighted importance of trust and face-to-face communication in treatment adherence and choice of care setting. Conclusions: Current health information systems, performance metrics and payment models represent significant barriers to integrated care delivery in oncology and survivorship. Successful implementation of efficient and sustainable regional oncology program will require a multi-dimensional intervention to address each of these barriers.
Identifying critical data elements for a provincial transition plan from a primary care perspective.
Authors: Hunter Stacey , De Rossi Stefanie , Gollnow Angelika , Kim Grace , Kucharski Ed , Martin Taylor , Soobrian Jasmin , Sussman Jonathan , Zwicker Victoria , Strasberg Suzanne
Published: March 2017

54

Background: Cancer Care Ontario is the provincial government advisor on the cancer and renal systems, as well as access to care for key health services. Enhancing flow of patient information and care plans are priorities to improve continuity and quality of survivorship care. Cancer Care Ontario’s Primary and Community Care and Survivorship Programs have initiated work to identify required information that primary care providers (PCPs) should receive about a patient’s cancer care at the point of transition back to primary care. Methods: Fifteen focus groups were conducted with PCPs in Ontario using a guide to facilitate group discussions on the utility and content of transition plans. Based on the collective feedback, thematic analysis was conducted on data elements that were expressed as critical with 12 common themes identified. Transition plan materials across Ontario’s Local Health Integration Networks and relevant jurisdictions in Canada and the United States were also reviewed to abstract a list of all documented data elements. A comprehensive matrix of data elements was then created by incorporating the list of all documented data elements with the 12 common themes. Using this matrix, prevalence of data elements amongst reviewed materials was ranked by frequency. A Modified-Delphi approach was used to validate and prioritize data elements with Cancer Care Ontario provincial and regional primary care clinical leadership. Results: In total, 21 documents were reviewed and 30 standard data elements were identified and ranked by frequency. The 10 most frequent data elements were classified as required for a standard transition plan. The remaining data elements were presented to 29 Cancer Care Ontario Cancer Leads to reach consensus on a core set of data elements to be required for inclusion in a transition plan. Conclusions: Essential data elements for inclusion in a transition plan have been identified from the perspective of PCPs. Next steps include engaging patient and family advisors, oncologists, and health system administrators through a phased regional consultation process. The role of synoptic reporting for a future standard survivorship transition plan will also be explored.
Relationship of age and cancer treatment to receiving treatment summaries and survivorship care plans in female young adult cancer survivors.
Authors: Shliakhtsitsava Ksenya , Romero Sally A. D. , Roberts Samantha , Su Irene
Published: March 2017

55

Background: For cancer survivors who were diagnosed with cancer during childhood, adolescence and young adulthood years, transitioning into survivorship and post-cancer treatment care remains challenging and may be aided by treatment summaries (TS) and/or survivorship care plans (SCP). Little research has been conducted on receipt of SCP and/or TS from the patient perspective. The objective of this study was to determine patient- and cancer-specific characteristics that are associated with receipt of SCP and/or TS (SCP/TS). Methods: 240 female young adult cancer survivors (YCS) between ages 18-44 were recruited to a national cohort study on reproductive health and completed a web-based survey that included report of receiving SCP and TS. We used logistic regression models to estimate odds ratios (OR) for characteristics associated with receipt of SCP/TS. Results: Mean age (standard deviation) was 32.8 (5.8) years; mean age at cancer diagnosis was 27.2 (7.1) years. Forty-eight (20%) participants were diagnosed with cancer at < 21 years of age. Only 47% of participants reported receipt of SCP/TS. In unadjusted analyses, current age, younger age at diagnosis, education level, receiving chemotherapy and receiving bone marrow transplant were significantly associated with report of SCP/TS receipt. In multivariable analyses, survivors diagnosed at younger age ( < 21 years) had 2-fold higher odds of SCP/TS receipt (OR 2.0, 95% CI 1.0-3.9). Chemotherapy treatment (OR 2.3, 95% CI 1.2-4.6) and bone marrow transplantation (OR 7.2, 95% CI 1.5-33.3) were also significantly associated with SCP/TS receipt. Conclusions: A significant proportion of YCS do not recall receiving a TS or SCP to aid in the transition to post-cancer treatment survivorship care. Receipt of these documents is not uniform across the young cancer survivor population. Improved integration of TS and SCP into cancer survivorship care is needed.
An evaluation of survivorship care plan program.
Authors: Spoljaric Debra , Depp Brittany , King Allison A.
Published: March 2017

62

Background: The Commission on Cancer mandated the development and implementation of survivorship care plans (SCP) in 2015. Minimal evidence exists to suggest SCP are meaningful to survivors and primary care physicians (PCP). We sought to evaluate the usefulness of the SCP as perceived by both survivors and PCP. Methods: Phase I was 8-month pilot using a 7-page SCP detailing medical information and follow up sections addressed to the survivor and to the PCP. To evaluate patient and PCP views on the SCP, a telephone survey was created for patients and a two-page Likert scale survey for PCP was faxed. Phase I evaluations revealed 90% of survivors did not look past page 2 of the document and 16% of PCP felt it was too long and busy to read. The SCP was edited for a 3-page version and implemented in Phase II over 11-months. Results: In Phase I, 78 SCP were delivered to survivors, 58% were surveyed. Of PCP, 24% responded. In Phase II, 895 SCP were delivered, and 274 (31%) survivors surveyed. In Phase I and II, when asked to identify themselves as a cancer survivor, 282 (88%) confirmed and 21 (7%) were unsure. After reviewing the SCP, 93.1% understood their plan of care; 79.6% understood potential late effects; 33% were aware of support or resources available; 96% would recommend to another cancer survivor to get one. In Phase II, 16% (43) of PCP responded. Overall replies were positive: 61% found resource list helpful; 66% wanted more specific information about patient potential late effects; 87% agreed knowing symptoms of late effects is helpful. 70% wanted clarity on follow up tests needed and who should order. PCP overwhelmingly agreed (88%) the SCP is helpful. 90% agreed that knowing ongoing side effects of treatment was important. Conclusions: Survivors liked having their cancer treatment in one concise document and PCP physicians feel that the SCP is meeting their basic needs. PCP are interested in more specific long term side effects to monitor in their patients and direction on what follow-up tests are needed and who is ordering them. Further research is needed to study the impact of SCP on survivors’ health.
A study to identify subjective gaps in survivorship knowledge of health care professionals in London.
Authors: Stanway Susannah Jane , Taylor Claire , Noble Jillian Louise , Doyle Natalie , Young Teresa , Cunningham Nicola , Capelan Marta , Van Hemelrijck Mieke , Chen Michelle , Kinsella Netty , Evans Simon , Wiseman Theresa
Published: March 2017

63

Background: The London Cancer Alliance (LCA), created in 2011, is an integrated cancer system consisting of 14 NHS organisations serving a population of 5.7 million. The multi-professional Survivorship Pathway Group aims to improve the outcomes of adults living with and beyond cancer. Methods: A 14-15 point questionnaire was developed to identify gaps in survivorship knowledge of oncology health care professionals (HCP) working in London. We were interested in HCP’s knowledge of the existence of the Recovery Package (Holistic Needs Assessment and care plan, Treatment Summary, access to a Health and Wellbeing Event and Cancer Care Review). The survey was uploaded onto Smart Survey and sent to 434 HCPs. Results: 167 surveys were anonymously completed. The distribution of respondents included Clinical Nurse Specialists(CNS), physiotherapists, dieticians, oncologists. The majority of respondents worked in specialist centers (44%), with 35% working in acute secondary care, 27% in acute tertiary care and 6% in the community. HCPs from all tumour groups were represented, though breast cancer and head and neck cancer were best represented. The majority of respondents were familiar with some or all of the components of the Recovery Package (80%). HCPs were most confident when asking about anxiety/depression (83%) but least confident or confident to some extent asking about changes in cognitive function (49%) and bone health (49%). When addressing needs, HCPs were confident addressing fatigue (47%) but less confident addressing cardiac complications (65%) and sexual concerns (64%). CNSs in particular were confident asking and addressing most concerns but many were not confident or were only somewhat confident addressing menopausal symptoms (34%) or lymphedema (37%). Further training was identified in psychological support, sexual consequences and management of long-term side effects. The predominant research priority identified was long-term side effects. Conclusions: Data from this survey will inform local educational fora, service mapping studies and the LCA Survivorship Research Group’s future strategy.
The Commission on Cancer’s survivorship care plan standard: Implementation is underway.
Authors: Miller Nina S.
Published: March 2017

72

Background: The American College of Surgeons Commission on Cancer established a patient-centered standard regarding the delivery of a survivorship care plan to cancer patients. In response to recommendations from the 2006 National Academy of Sciences, Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, a working group developed a set of Continuum of Care standards to address the psychosocial needs of cancer patients. In 2009 Commission on Cancer members had met to discuss a strategic plan for addressing a major shift in accreditation standards from process to patient-centered care with a focus on patient outcomes. According to Cancer Program Standards: Ensuring Patient-Centered Care, the cancer program must implement a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. Programs are in full implementation mode and surveys monitoring this Survivorship Care Plan Standard have begun this year. The care plan provides guidance and recommendations for survivors and their healthcare providers to address the medical and psychosocial problems that may arise post-treatment. By delivering a plan, the patient is empowered with information about the treatment they have received, the recommendations for their care going forward, and recommended resources. Methods: Programs submit documentation to describe their process for delivery of care through an electronic activity report. Documentation of this standard includes method of delivery, identification of eligible patients, implementation process and tracking. This presentation will summarize program submissions for 2015-2016 and include an analysis of the details of the standard compliance as reported by accredited programs. Results: This analysis will include responses from all Commission on Cancer accredited programs reporting on this standard. The analysis will provide information about the trends in program implementation and compliance with the standard. Conclusions: This analysis will inform future decisions about the content of plans, the value of plan delivery to the provider and to the patient and summarize current practice.