bluuebunny/crossref_metadata_2025 huggingface dataset:
Patient-generated online survivorship care plans for adult survivors of childhood cancer: Feasibility and patient preferences.
Authors: Szalda Dava , Schapira Marilyn M. , Schwartz Lisa , Kim Esther , Vachani Carolyn , Metz James M. , Hill-Kayser Christine E.
Published: February 2017

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Background: With improvements in pediatric cancer treatment, the number of childhood cancer survivors is growing rapidly. Survivorship care plans (SCPs) can provide survivors with necessary information and resources to engage in risk-based follow-up care. Online patient motivated SCPs are promising for adult survivors of childhood cancer with multiple care transitions and the need for self-management outside clinical encounters. Methods: An existing online SCP generator (OncoLife) was adapted to create Smart Adult Living After Childhood Cancer plans for survivors of pediatric Acute Lymphoblastic Lymphoma (ALL) and Hodgkin’s Lymphoma (HL) by incorporating Children’s Oncology Group Long Term Follow-Up Guidelines into existing information technology logic. Results: Adult survivors (n = 20) of pediatric ALL or HL, registered to be seen in radiation oncology or survivorship clinic at the University of Pennsylvania, created an online SCP and completed an online survey. Approximately 80% of patients contacted consented and completed SCP indicating high acceptability; two-thirds (66%) completed the survey. Participants were a median of 35.5 years of age and of 26.5 years since diagnosis. They were 50% female, majority Caucasian (90%), 70% ALL and 30% HL survivors. SCPs took an average of 9 minutes 46 seconds to complete. The majority (95%) of respondents found the SCP generator easy to use, would recommend it to others (85%), and were satisfied with the amount of information received (80%). Ninety percent stated they intended to discuss their SCP with a healthcare provider. Only a third (35%) of survivors stated they had previously received a formal SCP. Seventy percent (70%) stated a written or online plan was the best way to convey health information between visits. Preferences for use of online SCP included: 70% wanting a treatment summary to complete their SCP and 50% wanting personal information to be saved for later use. Conclusions: Online patient-motivated SCPs are a feasible and acceptable way to deliver information to adult survivors of pediatric cancer about long term health risks. Further research into optimal methods for creation, use and health benefits of SCPs is warranted.
Use of online survivorship care plans by young adult cancer survivors: Patient characteristics and patient reported outcomes.
Authors: Szalda Dava , Schapira Marilyn M. , Jacobs Linda A. , Vachani Carolyn , Metz James M. , Hill-Kayser Christine E.
Published: February 2017

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Background: Young adult survivors (YAS) are at risk for side effects of cancer therapy and poor post treatment self-management relative to older adult survivors (AS). Survivorship care plans (SCPs) have proved feasible to provide education on symptom management, but the characteristics of YAS who utilize SCPs and patient-reported outcomes (PROs) of YAS via SCPs remains unstudied. Methods: Patient-reported characteristics and outcomes of YAS, age 18 to 39 years, who used a free online SCP generator (OncoLife), between May 2010 and May 2012 are reported. PROs of YAS were compared to AS, age 40-70 years, via frequencies and chi-squared analyses. PROs were queried upon generation of SCP based on diagnosis and treatments received. Results: YAS (n = 1,445, Mage= 31.5 years) and AS (n = 6301, Mage= 56.3 years) were primarily female (69% vs. 78%), Caucasian (76% vs. 86%) and an average of 2.6 years (range 0-20years) vs. 3.2 years (range 0-46 years) since diagnosis and treatment. Most common diagnoses were breast cancer, testicular cancer, lymphoma, thyroid cancer, and sarcomas in YAS vs. breast, colon, lymphoma, prostate, and lung cancer in AS. Three-quarters (75%) of YAS and 70% of AS generated the SCP themselves with the remaining SCPs generated by health care providers. Less than a quarter (22%) of YAS or AS (18%) reported previously receiving a treatment summary. The most commonly endorsed PROs in YAS and AS were neurocognitive changes and fatigue. Fewer YAS than AS endorsed pulmonary concerns and male sexual side effects. The majority of PROs were reported at similar proportions by YAS and AS (see table). Conclusions: In patients who generated an OncoLife SCP, YAS reported similar rates of treatment-related side effects to those reported by AS demonstrating SCPs as a mechanism to capture and address off-therapy issues for all survivors. [Table: see text]
Establishing survivorship care planning in a comprehensive cancer center to meet clinic needs and accreditation standards.
Authors: Kircher Sheetal Mehta , Garcia Sofia M , Oden Megan Rae , Veneruso Aubri , Mckoy June M. , Penedo Frank J.
Published: February 2017

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Background: Standard 3.3 of the American College of Surgeons Commission on Cancer (CoC) patient-centered care guidelines requires that accredited institutions deliver SCPs to all patients completing cancer treatment with curative intent (10% of eligible patients in 2015 and increasing incrementally to 100% in 2019). Implementation of SCP delivery has been challenging and limited to date. We describe our implementation process at the Robert H. Lurie Comprehensive Cancer Center. Methods: We established a multidisciplinary working group that developed and administered a survey of providers’ attitudes towards SCPs and preferences for delivery, assessed clinical workflows, then developed and vetted customized SCP templates within the electronic health record (EHR) and two complimentary SCP delivery models. Results: Twelve providers completed the survey (6 physicians, 5 advanced practice providers [APPs], 1 nurse). 67% viewed SCPs as feasible within workflows, 75% felt designated survivorship clinicians were best equipped to deliver SCPs; All reported SCPs were beneficial to patients; and 92% felt SCPs were beneficial to inter-provider communication. Cited barriers were: time and staff required and non-optimal billing. To harmonize with existing workflows, we established two delivery models: (1) clinical groups with a low volume of survivors relative to available nursing staff complete and deliver SCPs themselves; (2) clinical groups with high volumes of survivors relative to available nursing staff refer patients to a centralized survivorship clinic where SCPs are delivered by designated survivorship APPs. All elements of the ASCO templates were incorporated into our EHR templates. We reduced free-text data entry by designing templates where 20% of the fields are auto-populated from existing EHR data and another 65% use drop-down menus. Mean completion time is 12 minutes (range 10-30 minutes; n= 30). Conclusions: CoC-accredited institutions across the nation are working to meet Standard 3.3. We present our experiences developing and implementing SCP delivery models, including lessons learned to inform models of survivorship care under development at other institutions.
A Dutch nationwide survivorship care program for Hodgkin lymphoma survivors.
Authors: Van Leeuwen Flora , Veer Mars van 't , Aleman Berthe M.P. , Dekker Nicky , Raemaekers John M. M. ,   BETER Consortium
Published: February 2017

6

Background: Survivors of Hodgkin lymphoma (HL) are at increased risk of various late adverse effects of treatment, leading to substantial excess morbidity and mortality. Long-term follow-up care programs have been established for childhood cancer survivors, but not yet for HL survivors. The Dutch BETER consortium (Better care after Hodgkin lymphoma: Evaluation of long-term Treatment Effects and screening Recommendations) has developed a nationwide infrastructure for Survivorship Care Clinics for HL survivors. The consortium aims to: 1) establish follow-up guidelines for survivors; 2) identify survivors eligible for follow-up care; 3) educate survivors about late adverse treatment effects; and 4) provide risk-based care. Methods: Evidence-based follow-up guidelines were developed according to international standards. The guideline development group consisted of clinicians, methodological experts and patient representatives. To be eligible for follow-up care patients must have survived ≥ 5 yrs and have been treated at ages 15-70 years after 1969. Survivors were identified through the Netherlands Cancer Registry and hospital-based registries. Tracing of current addresses was done through the nationwide database of Municipal Offices. Results: We developed guidelines forsecond malignancies, cardiovascular disease, thyroid disease, osteoporosis and functional asplenia infection prophylaxis. Recommendations are given for fertility care and therapy for neck muscle weakness. We have identified and traced a cohort of 12,000 HL survivors in 23 centers, covering about 80% of HL patients in the Netherlands, of whom 8,500 appear to be eligible for follow-up care. For all survivors, treatment data were collected from the medical records to provide risk-based screening recommendations. A website and a survivorship care plan were developed to educate survivors about late effects. A nationwide database, including screening and adverse events data, is in development to evaluate the follow-up guidelines for diagnostic value and efficacy. Conclusions: We expect that the BETER project will improve healthy life expectancy of HL survivors. Evaluation of follow-up care will lead to a more evidence-based follow-up program.
Patient and provider preferences: Treatment summary and survivorship care plans after hematopoietic cell transplant.
Authors: Murphy Elizabeth A , Majhail Navneet S. , Baker Kevin Scott , Abetti Beatrice , Jahagirdar Balkrishna N. , Kamani Naynesh , Rizzo J. Douglas , Saber Wael , Salazar Lizette , Schatz Barry , Syrjala Karen Leslie , Wingard John R. , Denzen Ellen M
Published: February 2017

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Background: There is a critical need to increase awareness of late complications and recommended preventive care among patients and providers and improve communication about long-term care. During transition back to community, care often becomes fragmented and insufficient to address survivors’ complex medical needs. A survivorship care plan (SCP) was developed using disease and hematopoietic cell transplant (HCT) data submitted to an outcomes registry. A treatment summary incorporates these data and identifies important treatment-related risk factors. The care plan uses these risk factors and long-term follow-up guidelines (Majhail et al, BBMT/BMT 2012) to provide personalized recommendations for preventive care. Study aims were to characterize patient-centered elements that will increase acceptability of the SCP. Methods: Phone focus groups (N = 12) were conducted for: 1) adult allogeneic patients > 1 year post-HCT and their caregivers (3 groups, N = 22); 2) hematology/oncology and primary care physicians/mid-level providers (3 groups, N = 24); 3) HCT providers (2 groups, N = 14); and 4) HCT nurses/social workers (4 groups, N = 17). Transcripts were coded and analyzed for saturation of key themes. Coding reliability and validity were assessed (kappa > .90). Results: Patients/caregivers reported challenges in accessing specialty care due to providers’ unfamiliarity with HCT and felt SCP should be more personalized with robust sections on psychosocial, sexual/mental health, and diet. Providers found the SCP markedly better than what they currently receive. Both patients and providers identified that SCP will facilitate appropriate post-HCT care. Similar themes were identified among the health professional groups, with the exception of screening and care for psychosocial issues more frequently mentioned by the nurses/social workers. Conclusions: Our study highlights the need for a personalized SCP tool to facilitate HCT survivorship care. Patient and provider feedback has been used to refine the SCP for which effectiveness is being assessed in a randomized, controlled trial. Engaging all stakeholder groups in this research helped to ensure patient-centeredness of the SCP.
Physician needs and preferences for information about long-term follow-up and care of survivors of childhood cancer.
Authors: Keats Melanie , Shea Kelsey , Parker Louise , Stewart Samuel A. , Flanders Annette , Bernstein Mark L.
Published: February 2017

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Background: The treatments that childhood cancer survivors (CCS) undergo can lead to an increased risk of other health problems later in life, and risk-based follow-up care is necessary throughout their lifetime. Regrettably, family physicians caring for CCS often report having no record of their patients’ past disease, treatment history, or need for follow-up. As the large majority of CCS will transition from specialized pediatric oncology care to generalized adult care in the community, detailed treatment summaries and Survivorship Care Plans (SCP) are needed to ensure that both the survivor and their care providers are adequately informed of the survivors diagnosis, treatment(s), potential risk for late effects, and long-term surveillance and healthcare needs. This qualitative study sought to explore the needs, preferences, and the perceived utility of SCP for family physicians (FP) caring for CCS. Methods: Using publically available Children’s Oncology Group guidelines, a de-identified sample SCP indicating the diagnosis, treatment(s) received, and follow-up recommendations for a common childhood cancer diagnosis was automatically generated using a newly developed algorithm and patient data from the Cancer in Young People – Canada registry. Semi-structured telephone interviews with six FP that have a known CCS in their practice were then used to gain insight into the FP perceived role in the long-term management and care of CCS, their cancer information needs, concerns with communication, their perceived utility of the SCP, and preferred format(s) for receiving the SCP. The constant comparative method was used for thematic analysis. Results: The key themes emerging from the six completed interviews include a lack of confidence among FP in their ability to care for CCS and a need for additional knowledge and resources. FP also identified psychological barriers to cancer care discussions with CCS and identified a patient need for greater psychological support. Overall, SCP were viewed as helpful. Conclusions: SCP are perceived to be of benefit to FP of CCS as they serve to increase their knowledge of patient diagnosis, treatments received, and suggested risk-based follow-up.
Recall and uptake of survivorship care plan recommendations.
Authors: Salner Andrew L. , Walker Deborah , Seltzer Amanda , Panzer SarahLena , Stricker Carrie , Dornelas Ellen A
Published: February 2017

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Background: Despite the growing delivery of survivorship care plans (SCPs), little research has examined survivors’ recall and adoption of SCP recommendations, including those based on patient-reported symptoms and concerns. Methods: 65 stage 0-III breast cancer survivors participated in this pilot project. Patients completed an electronic patient-reported outcomes (ePRO) survey prior to a visit with a nurse practitioner, who delivered a tailored SCP generated by the Carevive Care Planning System (CPS) using evidence-based algorithms driven by ePRO and diagnosis/treatment data. Approximately 6 weeks later, patients completed a survey to evaluate their recall and any corresponding action taken. Actual SCP recommendations were extracted from the Carevive CPS database and matched to follow-up surveys to determine recall accuracy. Results: Data were analyzed for 35 patients completing follow-up surveys to date. SCPs contained an average of 22.2 recommendations per patient, almost half (n = 10.7) for active symptoms/supportive care issues. Recommendations were broken down into 3 groups 1) Surveillance, 2) Prevention, and 3) Intervention; see table below for select results. Of note, lymphedema-related recommendations were recalled accurately more often (p = 0.005) by those with symptoms vs. those advised on prevention. Conclusions: Incorporating an ePRO survey into SCP delivery enables tailoring to patient needs and concerns, which may in turn enhance recall and follow through given saliency. Patients tended to recall more accurately SCP recommendations for active or more severe symptoms. Additional research is needed to maximize retention and follow through on SCP recommendations. [Table: see text]
Implementing survivorship care planning in a large integrated cancer program.
Authors: Cairo Jamie , Huibregtse Carol , Ferry Adam , Weese James L.
Published: February 2017

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Background: Aurora Health Care is comprised of 15 hospitals and 22 oncology clinics. Aurora Cancer Care (ACC), a Commission on Cancer (CoC) accredited program, diagnoses and treats 7,000 adult cancer patients annually, more than any other healthcare system in Wisconsin. The CoC’s Survivorship Standard 3.3 requires accredited cancer programs to provide cancer patients with survivorship counseling and a written care plan. ACC was challenged to develop a consistent model of survivorship care that can work at multiple sites across the system. Methods: Workflow planning and education began at all oncology clinics in fourth quarter of 2014. Thirteen disease specific survivorship care plan templates were built into the EMR with some-auto population functionality. A system wide delivery plan was launched in first quarter of 2015 with the goal of targeting 10% of eligible patients. Initial focus was on breast cancer patients with some sites also including other cancers. The model of survivorship care is an “embedded consultation” in medical or surgical oncology with an advanced practice provider (APP) completing the care plan and meeting with the patient at the end of first line treatment. Results: Initial required volumes were estimated based on 2013 registry data with a goal of completing approximately 700 care plans in 2015 to meet the 10% CoC standard. During Q1 & Q2 of 2015, 444 care plans were generated and given to patients, mostly for breast cancer survivors. The most significant barrier surrounded retrieving data from the EMR. Conclusions: Data from the first half of 2015 demonstrates success with the approach. Aurora Cancer Care will exceed the benchmark of 700 care plans. There has been a high level of engagement with the APPs who have taken ownership of survivorship care planning, contributing to the success of the program thus far. Because of difficulty retrieving data from the EMR, manual tracking was still required. Future modifications will address this and other barriers.
Advanced practice providers and survivorship care plans.
Authors: Mikan Sabrina Q. , Carter Patricia , Patt Debra A.
Published: February 2017

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Background: The American College of Surgeons mandate in 2012 challenged organizations to create and develop quality survivorship care programs. The NCCN and Commission on Cancer set the standard for quality psychosocial care recognizing distress as part of the cancer continuum. In order to meet this challenge, community cancer care organizations are incorporating delivery of survivorship and psychosocial care into the Advanced Practice Provider (APP) role. APPs include Physician Assistants (PAs) and Advanced Practice Nurses (APNs). We describe the development and feasibility testing of an APP-led survivorship program in a large network of community oncology practices. Methods: A descriptive study design was used with ten practices participating in the implementation of a structured APP-led survivorship program. The goals of each survivorship visit were to: review recommendations for care and healthy lifestyle behaviors, review surveillance recommendations, and to reconnect patients with their primary care providers. Nineteen APPs in the study site practices offered survivorship management between October 2012 and May 2015 to female breast and colon cancers at all stages. Results: Study sites used structured process maps to identify and refer patients to survivorship visits. Evaluations of additional referral strategies are ongoing. Participating APPs reported high self-efficacy in delivering survivorship care plans and high patient satisfaction following visits. All female breast or colon cancer patients, regardless of stage at diagnosis, attended the appointment and received a complete care plan based upon the ASCO Survivorship Care Plan. Surveillance education was provided specific to diagnosis utilizing the NCCN guidelines delivering person-centered care. Visits lasted an average of 60 minutes and were billable as counseling and coordination. Conclusions: Patients diagnosed with breast or colon cancer make up the largest majority of cancer survivors. This project reveals that an APP-led survivorship program is feasible and can help to meet the ASCO and NCCN challenge of providing survivorship care to this large population.
Do nurse-navigated TSSCPs improve treatment and follow up compliance in underserved populations?
Authors: Manoukian Camille , Altamirano Maria , Ashing Kimlin Tan , Callahan Ann Falor , Sun Virginia , Sudan Nimit , Lai Lily L.
Published: February 2017

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Background: Multiple cancer organizations advocate for the use of treatment summaries and survivorship care plans (TSSCPs) in cancer patients. To better quantify the benefits of a nurse-navigated, culturally and linguistically responsive TSSCP in underserved breast cancer patients, we compared rates of compliance with treatment and follow up in 26 patients who were treated with TSSCPs to 38 similar controls who were treated without TSSCPs. Methods: We prospectively enrolled 26 consecutive, newly-diagnosed breast cancer patients who were given nurse-navigated TSSCPs under an IRB-approved protocol. At their first clinic visit, a trained nurse educated and assisted the patient in the use and completion of the TSSCP. Nurse-navigated TSSCPs were completed at each subsequent visit through 12 months of surveillance. Rates of compliance with treatment and follow up guidelines were compared to 38 similar control patients using a two group Fisher’s exact chi-square test. Statistical significance was set at p-value < 0.05. Results: All patients were treated under Medicaid insurance and 47% were racial and/or ethnic minorities. Time from diagnosis to treatment and time from initial clinic visit to treatment were similar across groups. The rate of compliance with first treatment recommendations was 96% (25/26) in the TSSCP group compared to 79% (30/38) in the non-TSSCP group (p = 0.07). The number of patients compliant with all follow up visits was similar: 22/25 (88%) of TSSCP patients and 22/30 (73%) in non-TSSCP patients (p = 0.31). Of the recommended total follow up appointments, 6/67 in the TSSCP group and 25/120 in the no TSSCP group were “no shows” (p = 0.04). Conclusions: Although the use of nurse-navigated TSSCPs may not improve time to treatment in medically underserved patients, adherence to first treatment recommendations and follow up appointment attendance shows some improvement in patients who participate in nurse-navigated TSSCPs. Further study is needed to fully assess the role of nurse-navigated TSSCPs in improving treatment and surveillance compliance rates and how these rates impact clinical outcomes. Acknowledgement: Funded by a Community Grant from the Los Angeles County Affiliate of Susan G. Komen.
Impact of an inpatient palliative consultation in terminally ill cancer patients.
Authors: Vegunta Radha Krishna Rao , Blue Brandon Jamal , Fernandes Hermina Deepika , Upadhyayula Satya , Burhanna Patricia , Rodin Miriam B. , Poddar Nishant
Published: February 2017

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Background: Terminally ill cancer patients have complex medical and psychosocial needs at the end of life. Given these complexities, limited data is available to suggest the appropriate timing of palliative care involvement in the treatment of cancer. Our study aims to describe the referral patterns of inpatient palliative care consultations in advanced cancer patients in a tertiary care center. Methods: A retrospective review was performed. Inpatient palliative consultation was obtained in cancer patients from January 1, 2014 to December 31, 2014. Descriptive statistics are used in data analysis. Results: Inpatient palliative care consults (IPCC) were obtained for 245 cancer patients admitted to Saint Louis University Hospital. Of the 245, 130 were male (53.06%), 115 were female (46.93%), 128 were White (52.24%), and 114 were Black (46.53%). Newly diagnosed patients with cancer during the current admission were 79(32.24%). 57 (23.26%) patients were admitted to the Intensive care unit during hospitalization. A total of 39(15.91%) patients died in the hospital; among those who died in the hospital 34 had ICU stay during the hospitalization or died in the ICU (87%). Malignancies most common were lung 71(28.97%) followed by pancreatic-biliary 33(13.4%), lymphoma and leukemia 22(8.9%), hepatocellular carcinoma 18(7.34%), head and neck 16 (6.5%), and upper GI 16 (6.5%). Disposition at discharge included home hospice 67 (28.3%), hospice in facility 27(11%), home without hospice 71(28.9%), facility without hospice 39(15.9%). Conclusions: According to the National Hospice and Palliative Care Organization as of 2013, 7.0% hospice patients die in acute care hospitals. Our data shows 15.9% who received IPCC died in the hospital with 87% dying in ICU. This is likely due to delays in the initiation of palliative care consultation as outpatient leading to increase strain on tertiary referral centers. In another study 22% of eligible Black patients received IPCC. Our rate of IPCC in Blacks was 46.5%. This highlights the disparity in access to outpatient palliative care in this population. Future efforts should be made to promote early outpatient palliative services to reduce ICU admissions, hospital re-admissions and healthcare costs.
Telephonic assesment of consumer satisfaction of telephonic case management of cancer patients.
Authors: Rossof Arthur H. , Rosen Michael W. , Lindholm Melissa , Schumacker Pam , Richards Diane
Published: February 2017

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Background: Feedback provided by customers/consumers has become an established means of assessing the quality of goods and services. The Optum division of UnitedHealth Group maintains two telephonic case management programs for cancer patients to support quality and cost effective care: Cancer Resource Services (CRS) and the Cancer Support Program (CSP). In each case, the purpose of the telephonic intervention is to provide support, education, and, when appropriate, steerage to one of our contracted Centers of Excellence (COEs). Methods: In this report, we provide satisfaction data collected during 2014 from surviving patients whose cases were closed or reached their 1-year anniversary in these case management programs. These telephonic surveys were conducted by a contracted third party. Results: For CRS, 363 members were contacted and surveys were completed; for CSP, 400 were contacted and completed. Average age was 61 (CRS) and 57 years (CSP). 61% were women. Sixty-two % of the CRS patients were treated at a COE as were 59% of the CSP patients. For CRS members, 90% experienced a positive health care experience (satisfied or very satisfied); for CSP, 94%. Quality of life was improved in 51% for CRS and 65% for CSP. For all four of these measures, there was a statistically significant (p < 0.05) improvement compared with the survey data from 2013. There was 96% overall satisfaction with the program for both CRS and CSP, while overall satisfaction with the nurse/case manager was 96% (CRS) and 98% (CSP). 96% (CRS) and 94% (CSP) are likely to recommend these services to others while 97% and 91% are likely to use these services again if needed. Positive comments outweighed suggestions for improvement. The most common suggestion for improvement was to expand the availability of these services. Conclusions: We conclude that our members with cancer are benefiting from the experience of telephonic case management by our experienced oncology nurse/case managers who are, in turn, assisted by our associated staff of social workers and medical directors.
Approach to offering remote support to mesothelioma patients: The Mesothelioma Survivor Project.
Authors: Bates Gleneara Elizabeth , Bressler Toby , Hashmi Anisah Khurshid , Hesdorffer Mary , Taub Robert N.
Published: February 2017

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Background: From the moment of diagnosis, malignant mesothelioma (MM), decreases health-related quality-of-life (QOL) in patients and their caregivers. In addition to symptoms of disease, aggressive treatments such as surgery, radiation, and chemotherapy can cause extreme side effects – specifically, chemotherapy is associated with chronic fatigue, unremitting nausea, vomiting, and systemic pain. These side effects of treatments can be burdensome enough to lead to noncompliance or outright refusal of continuation of care.[1] Data from 13 frequently cited QOL studies focus on chest pain and shortness of breath as the two chief symptoms of pleural mesothelioma. The largest QOL study to date enrolled 495 patients, evaluated MM using the LCSS (lung cancer symptom scale). Investigators reported MM’s most common symptoms as: fatigue (94%), dyspnea (89%), loss of appetite (86%), chest pain (85%), cough (75%), and hemoptysis (24%). In addition, mesothelioma has a number of emotional consequences. A study by the British Lung Foundation (BLF) reported significant impairment of emotional function and/or emotional state in patients with mesothelioma and their family members.[2] Methods: The platform for the support group was remote, consisting of both online and telephone domains. Participants would utilize both online and phone systems during sessions, held once a week for a total of 6 weeks. Sessions were guided and kept closed, available only to those affected by mesothelioma. Participants completed surveys after each support group. Session summaries and follow-up information were provided online after support meetings. Results: Using a 0-5 Likert Scale, consistent attendees reported support groups as very helpful (4). Irregular attendees had mixed feelings ranging from extremely helpful (5) to neutral (3). 80% of attendees participated in support groups prior to ours. Conclusions: Active participation in a guided and closed support group allowed participants to share their experiences and concerns about their diagnoses, comfortably – supporting transition beyond active-treatment. The online portion of the platform was helpful in assuaging common negative concerns.
Exploring patient-provider communication about cancer survivorship care in community-dwelling survivors.
Authors: Palos Guadalupe R. , Gilmore Katherine Ramsey , Lewis-Patterson Paula A. , Chapman Patricia , Rodriguez Maria Alma
Published: February 2017

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Background: Patient-provider communication about survivorship care and care plans is a core tenet of quality cancer care. Our objective was to examine gaps in communication about maintaining health, importance of follow-up care, and unmet information needs in community-based survivors. Methods: A convenience sample of adult survivors attending a community-based cancer survivorship conference were eligible to take this survey. Consenting adult survivors completed a self-administered survey with selected questions from the NCI Follow-Up Care Use among Survivors Survey. Participants were informed that survey completion was voluntary and confidential. Descriptive statistics were used to summarize and analyze data. Results: 284 surveys were distributed and 169 surveys returned, resulting in a response rate of 59.5%. After excluding Spanish-language surveys and respondents not diagnosed with cancer, 109 surveys were included in this sub-analysis. Most survivors were female (77.7%), college-educated (86.1%), married (58.4%) and diagnosed with breast cancer (47.5%). Over half (55.5%) reported experiencing pain that interfered with their daily routine yet, 83.2% reported being in good to excellent health. The primary reason for receiving follow-up care was to check for recurrence (66.2%). Most survivors (78.5%) reported having no to some patient-provider discussions about the late effects associated their treatment. 47.6% reported not receiving information about a written care summary from their provider, 94.8% would have liked to have received a written summary, and 73.1% preferred more information about the benefits of a personalized care plan. Survivors also reported in the past 2 years, their providers did not discuss topics related to emotional concerns (35.3%), alcohol consumption (35.1%) and types of foods to eat (33.8%). Survivors wanted more information on self-management techniques such as how to improve energy (83.2%), manage fatigue (72.9%), or improve sleep (69.3%) Conclusions: Our findings highlight the need for further examination on the impact of inadequate patient-provider communication on survivors’ outcomes and providers’ practice.
Sexual health inquiry preferences among gynecologic cancer patients after radiation therapy.
Authors: Heath Gerard Edward , Fairchild Pamela , Berger Mitchell , Tolpadi Anagha , Chapman Christina , Jolly Shruti
Published: February 2017

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Background: Following radiation therapy (RT), gynecologic oncology patients report high rates of sexual dysfunction. However, little is known regarding communication of sexual health among these patients and their healthcare providers. The aim of this study was to assess the beliefs/attitudes of patients regarding sexual history taking. Methods: Survey results were obtained from 75 women who presented for follow up care for gynecologic cancers in the radiation oncology department. The surveys assessed patient beliefs about sexual health and its impact on overall quality of life, the role practitioners should play in obtaining an accurate sexual history, and preferences and level of embarrassment regarding sexual history collection. Overall level of sexual functioning was assessed using the Female Sexual Function Index (FSFI). Chi-squared tests were used to analyze categorical variables and logistic regression modeling was used to predict agreement with survey statements. Results: Most subjects were white and married with a mean FSFI score of 9.9 [(SD = 10.3) sexual dysfunction is defined as < 26.5]. 78.7% agreed that sexual function is an important component of overall health, and only 12.0% reported embarrassment about discussing their sexual health with healthcare providers. 62.79% agreed that medical providers should take a sexual history on a regular basis. However, 58.7% and 22.7% of women report never or almost never being asked about their sexual health by their primary care physician or Ob/Gyn, respectively. Approximately two-thirds of women expressed a preference to have a female provider obtain their sexual health history. Conclusions: Gynecologic cancer patients s/p RT report low sexual function scores. A majority agree that sexual function is essential to overall health. They report little embarrassment regarding discussions of sexual health, yet, note limited discussion about the topic with their healthcare providers. This work highlights the need for improvements in communication about sexual health. We suggest that healthcare providers caring for women with gynecologic cancers should more regularly inquire about their patients’ sexual health and function.
Education practices in prostate cancer: A comparison of patient and caregiver experiences.
Authors: Allen John Clayton , Du Liping , Ahmed Ivy A , Morgans Alicia Katherine
Published: February 2017

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Background: Evidence suggests that greater knowledge of an illness is associated with better health outcomes, and interventions that enhance disease-specific knowledge can improve these outcomes. Information needs among prostate cancer survivors and their caregivers are incompletely described. We assessed information needs and practices among men with prostate cancer and prostate cancer caregivers at the time of diagnosis. Methods: Using the online “Prostate Cancer Education Survey” performed by prostate cancer non-profit ZERO completed 2013-2014, we evaluated 824 patients with prostate cancer and 168 prostate cancer caregivers to determine information needs regarding prostate cancer. We used Pearson chi-squared tests and multivariable logistic regression models to determine educational needs and experiences among patients and caregivers, and their association with clinical and sociodemographic factors. Results: Among 824 patients and 168 caregivers describing information received at diagnosis, statistically significantly fewer caregivers reported receiving information as compared with patients (79% of patients vs 71% of caregivers; p = 0.002). Among 543 patients and 98 caregivers who reported receiving information, patients were more likely to report that the information was more useful, and caregivers were more likely to report that the information was less useful on a five-point usefulness scale (p = 0.05). Only time since diagnosis was significantly associated with report of receipt of educational material at diagnosis for both patients and caregivers (p < .001) in multivariable regressions. Conclusions: Although most patients and caregivers report receiving prostate cancer information when diagnosed, caregivers report this less frequently, and more frequently report that it was not useful. Efforts to address this disparity should further investigate the information needs of prostate cancer caregivers to provide them with more consistent and useful information.
Recovery challenges faced by bladder cancer survivors after recent cystectomy and urinary diversion.
Authors: McMullen Carmit K. , Danforth Kim N. , Kwan Marilyn L , Bulkley Joanna E , O'Keeffe-Rosetti Maureen Cecelia , Weinmann Sheila , Krouse Robert S. , Hornbrook Mark C. , Grant Marcia , Leo Michael C , Gilbert Scott Michael
Published: February 2017

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Background: Bladder cancer patients who are treated with cystectomy (bladder removal) and urinary diversion (bladder replacement) experience high rates of complications and hospital readmissions, and have substantial supportive care needs. Patient-reported priorities for improving early-phase survivorship care are lacking. Methods: On the basis of focus groups and in-depth interviews with 32 bladder cancer survivors about post-operative challenges, we developed a structured question listing 16 early survivorship challenges. We asked respondents to indicate which challenges had been difficult to manage at home. The item was part of a survey mailed to members of three Kaiser Permanente regions who had undergone cystectomy and urinary diversion for bladder cancer approximately 6 months previously (N = 197). Eligible patients were identified through health plan databases and chart review. Results: The response rate to the survey was 65%. Respondents reported an average of 3 challenges. The most commonly reported challenges pertained to coordination of medical care (69%), such as confusion about follow-up care, problems obtaining medical and ostomy supplies, knowing what complications to look for and who to notify if they occur, receiving home health care, or obtaining prompt medical advice. Other problems were caring for the urinary diversion (53%); dealing with urine leaks and incontinence (49%); problems with balance, vision, and dexterity (32%); difficulty managing emotions (23%); and management of lymphedema (11%) or incisional or parastomal hernias (7%). Conclusions: More than two thirds of bladder cancer survivors who had recently undergone cystectomy and urinary diversion struggled with medical care coordination. Managing self-care, complications, and emotional well-being after this major surgery can be difficult for patients, who must also navigate a variety of supportive services, such as medical follow-up with multiple departments and providers, home health services, and wound or ostomy care. A more formal approach to discharge and better communication among patients and providers will help improve early survivorship care for this group.
Understanding the impact of primary care providers on treatment decisions for men with localized prostate cancer.
Authors: Radhakrishnan Archana , Grande David , Crossette Linda , Bekelman Justin E. , Pollack Craig Evan
Published: February 2017

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Background: Primary care providers (PCPs) play important roles for cancer patients across the care continuum and may help patients make treatment decisions in line with patients’ preferences. However, the extent of PCP involvement is poorly understood. We evaluated how frequently men with localized prostate cancer discuss treatment with their PCP and whether PCP involvement decreased use of definitive treatment, including among those eligible for surveillance according to clinical guidelines. Methods: We mailed surveys to men diagnosed with localized prostate cancer between 2012 and 2013 in the greater Philadelphia area. Patients reporting having a PCP at the time of diagnosis were asked whether their PCP helped decide how to treat their cancer. Definitive treatment was defined as having radical prostatectomy or radiation therapy. Unadjusted and multivariate logistic regression analyses were used to compare sociodemographic and clinical characteristics of patients who did and did not discuss treatment with their PCP. Similar analyses were used to determine effect of PCP involvement on definitive treatment, both overall and in subgroups of men eligible for surveillance (men > 70 years, with limited life expectancy and with low-risk prostate cancer). Results: 3743 men were mailed a survey, 1757 responded, and 1139 were eligible for analyses. Overall, 438 (38.5%) discussed treatment with their PCP. In adjusted analyses, black men were more likely than white men (Odds Ratio 1.89; 95% Confidence Interval 1.22-2.91) and men with Medicare were more likely than men with private insurance (OR 1.61; 95% CI 1.03-2.51) to discuss treatment with their PCP. However, men who had treatment discussions with their PCP were not less likely to receive definitive treatment (p = 0.11), both overall and among those eligible for surveillance. Conclusions: Though a large proportion of men engaged in treatment discussions with their PCP, these discussions were not associated with differences in the receipt of definitive treatment among men with localized prostate cancer. Understanding the content of these discussions can inform interventions that can help patients make preference concordant treatment decisions.
What is the role of comorbidity, frailty, and functional status in the decision-making process for older adults with cancer and their family members, oncologists, and family physician?
Authors: Puts Martine , Sattar Schroder , McWatters Kara , Lee Katharine , Kulik Michael , Macdonald Mary Ellen , Jang Raymond Woo-Jun , Amir Eitan , Krzyzanowska Monika K. , Leighl Natasha B. , Fitch Margaret , Joshua Anthony M. , Warde Padraig Richard , Tourangeau Ann , Alibhai Shabbir M.H.
Published: February 2017

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Background: Little is known about the treatment decision making process (TDMP) in older adults (OA) with cancer. The objective of this study is to develop a theoretical framework with the aim to improve the TDMP for this population. Methods: This is a mixed methods multi-perspective longitudinal study. OAs aged > 70 years with advanced prostate, breast, colorectal, or lung cancer, their family members, oncologists and family physicians are invited to participate in individual, semi-structured interviews. Each OA also completes a short survey to characterize their health, functional status, frailty level, decision-making preferences, and satisfaction with the TDMP. The sample is stratified on age (70-79 and 80+) to obtain data saturation for the oldest old. All interviews will be analyzed using the grounded-theory approach. Results: To date, 32 first interviews and 15 second interviews have been completed with 32 older adults, 21 family members and 12 family physicians and 7 cancer specialists. Interviews lasted between 10-60 minutes. Most older adults felt that they should have the final say in the treatment decision, but strongly valued their physician’s opinion. Most participants felt they received enough information, time and support from the oncologist to make their decision. About half the participants went to see their family physician to talk about the diagnosis and plan. Comorbidity and potential side-effects did not play a major role in the decision-making processes for patients and families but it did for oncologists. Family physicians reported they were not involved in treatment decisions, and they preferred more timely information about the patient. Conclusions: This study-in-progress is examining the TDMP from four different perspectives and examining changes over time in the TDMP. Patients and family members were generally satisfied with the treatment decision making process. Final results will be presented at the conference.
The female self-advocacy in cancer survivorship scale: Validating a new measure to support patient voice and engagement.
Authors: Hagan Teresa , Cohen Susan M. , Rosenzweig Margaret Quinn , Zorn Kristin Kelley , Stone Clement , Donovan Heidi AS
Published: February 2017

96

Background: The Female Self-Advocacy in Cancer Survivorship (FSACS) Scale is a new measurement tool designed to address the increasing need for cancer survivors to lead their care in face of barriers. Based on previous input from female cancer survivors and other stakeholders, the purpose of this study is to evaluate the construct validity of the FSACS Scale. Construct validity is supported by evidence from: (I) Internal structure consistent with the underlying model of self-advocacy; (II) Sensitivity to differences between known groups; (III) Relationships between self-advocacy and key predictors (openness and conscientiousness; information engagement; social support) and outcomes (symptom distress and healthcare utilization); (IV) Relationships between self-advocacy and related concepts (patient activation; self-advocacy within the HIV/AIDS population); and (V) Relationships between self-advocacy and criterion measures. Methods: A mixed-mode cross-sectional survey design was used. Women with a history of an adult diagnosis of invasive cancer were recruited from two patient registries and seven advocacy organizations. Analyses included an exploratory factor analysis, t-tests, and bivariate correlations. Results: 315 adult female cancer survivors completed the survey. Evidence from all five construct validity hypotheses supports the construct validity of the FSACS Scale. The factor analysis confirmed the three underlying dimensions of self-advocacy resulting in a 20-item measure explaining 45.87% of the variance in responses with subscales’ Cronbach’s alphas between 0.791 and 0.850. Conclusions: Results support that the FSACS Scale is a theoretically-grounded measure of self-advocacy that can be used by clinicians and researchers to identify women at-risk for poor outcomes associated with low self-advocacy.