bluuebunny/crossref_metadata_2025 huggingface dataset:
Usability of an adapted electronic health record (EHR)-based cardiovascular health application in the oncology setting: Perceptions of oncologists and cancer survivors.
Authors: Weaver Kathryn E. , Klepin Heidi D. , Avery Tiffany P. , Lamar Zanetta S. , Pajewski Nicholas , Hundley William G , Wells Brian J , Johnson Aimee , Foraker Randi E
Published: May 2018

129

Background: Cardiovascular health (CVH) is of increasing concern to cancer survivors and their healthcare providers, since survivors of many early-stage cancers are more likely to die of cardiovascular disease than cancer. Our team adapted an existing EHR-based CVH data visualization application designed for the primary care setting to be used in the community oncology setting. We evaluated the acceptability of the Automated Heart-Health Application (AH-HA) among oncology providers and cancer survivors. Methods: We queried oncologists, physician assistants, and nurse practitioners (n=20) who provide care to survivors regarding their perceived usability of AH-HA. Oncologists’ responses were assessed on a 7-point Likert scale from strongly disagree (1) to strongly agree (7); we categorized responses of 5-7 as “agreeing”. We additionally asked cancer survivors (N=48) for their opinions of AH-HA. Patients’ responses were assessed on a 5-point Likert scale from strongly disagree (1) to strongly agree (5); responses of 4 or 5 were categorized as “agreeing”. Results: The majority (60%) of oncology providers (60% female, 65% medical oncologists) had been practicing for more than 5 years. Breast cancer survivors comprised the majority of the survivor sample (98%). Usability data are presented below. 85% of providers reported they would use the tool most or all of the time when providing survivorship care. 94% of patients thought oncologists should discuss heart health during survivorship care; 69% would like to use AH-HA with their oncologist. Conclusions: These usability data demonstrate acceptability and feasibility of implementing the AH-HA application in oncology practices and suggest that oncology providers and survivors would value the integration of such applications in survivorship care. [Table: see text]
Feasibility of a sexual health program for women receiving pelvic radiation therapy for gynecologic and lower GI cancers.
Authors: Drapek Lorraine C.
Published: May 2018

135

Background: Long term effects of pelvic radiation for women include vaginal stenosis, leading to distress regarding sexual function. The NCCN guidelines recommend asking patients about sexual function at frequent intervals. NCCN recommends the use of vaginal dilators for women who have had pelvic radiation. Vaginal dilators have been widely recommended to minimize these long term effects. However, current evidence demonstrates poor adherence (less than 50%) of vaginal dilator use. Methods: A sexual health clinic was implemented at the radiation oncology department of a large academic medical center. This initiative consisted of three visits with a nurse practitioner over a twelve week period. The first visit was completed prior to the start of radiation, consisted of sexual history, completion of the PROMIS sexual health survey, and education regarding vaginal stenosis. The importance of the use of vaginal dilators following the completion of radiation was emphasized.. The second visit occurred at the completion of radiation and consisted of the PROMIS sexual health survey, and reinforcement of the use of vaginal dilators. Patients were instructed to begin use of vaginal dilators two weeks later. Each patient was given a set of four vaginal dilators, and a vaginal dilator diary. The third visit was completed six to eight weeks post treatment and consisted of completion of the PROMIS sexual health survey, review of the vaginal dilator diary, discussion of patient progress, and reinforcement of education. Results: From August 2016 to September 2017, 38 patients were approached and all completed the first visit (100%). Twenty-three patients completed the second visit (61%). Thirteen patients have completed all three visits (35%). At the end of three visits 11 (85%) of 13 patients were using vaginal dilators, and three had become sexually active. Conclusions: This program demonstrates a high enrollment and completion rate, as well as an important survivorship issue for women undergoing pelvic radiation. The reinforcement of long term effects of radiation enabled patients to understand the importance of using vaginal dilators in to maintain vaginal health and maintain sexual function.
Developing a survivorship specific curriculum for an advanced practice provider fellowship.
Authors: Hatfield Rachée , Ghosh-Berkebile Rupa , Schimming Denise , Browning Kristine , Mathey Kristina , Klemanski Dori
Published: May 2018

14

Background: Holistic oncology care combines cancer treatment with supportive care to meet the physical and psychosocial needs of the cancer survivor. Advanced Practice Providers (APPs) are prepared to deliver high-quality, comprehensive oncology care and are vital to survivorship care as the number of cancer survivors continues to rise. At a Midwest Comprehensive Cancer Center (CCC), an APP oncology-specific fellowship is an innovative year-long postgraduate clinical training program. For the first time, a 2 week rotation through this CCC’s survivorship department will be piloted to provide the fellow with a basic immersion into survivorship care. Methods: APP oncology fellowship graduates completed an open ended survey. They were asked to reflect on their experiences during the fellowship and provide feedback on how to improve course content, and resources that are essential to the delivery of survivorship care. APPs within the survivorship department and the APP fellowship lead educator were asked what objectives they thought were important to be met. Results: APPs fellowship graduates desired to learn more about the philosophy of survivorship care, latent and long term side effect management, creation and delivery of a treatment summary and survivorship care plan (TS/SCP), and specific strategies for executing a meaningful survivorship care visit. Networking with oncology providers was also important. Survivorship department APPs and the fellowship lead thought it was important to know how to do a holistic and supportive care assessment, create a TS/SCP, interpret and manage a distress screening tool and make appropriate supportive care referrals. Conclusions: Cancer survivorship is an integral part of holistic oncology care. As the number of cancer survivors continues to increase, so does the need for supportive care services throughout the cancer continuum. Feedback from those surveyed was used to help develop a survivorship specific curriculum for APP oncology fellows. Educating future APPs in the principles of survivorship care and available supportive care services will result in expert clinicians in survivorship care, and improve overall well-being and quality of life of cancer survivors.
Behavioral treatment of insomnia in cancer survivors: Early results of a stepped-care trial.
Authors: Recklitis Christopher J. , Partridge Ann H. , Michaud Alexis L. , Zhou Eric
Published: May 2018

140

Background: Insomnia is a burdensome late-effect for up to 30% of long-term survivors. Behavioral insomnia treatments are highly effective, but are not available to most affected survivors. Treatment barriers include lack of trained clinicians and resource demands for standard treatment of 6-8 individual sessions. To address these barriers we investigated the efficacy of delivering insomnia treatment in a stepped-care trial (NCT02756390); low intensity treatment was delivered to all participants, and more intense treatment reserved for non-responders. Methods: 43 survivors (91% female; mean ge = 55 yrs; mean time since diagnosis = 11 yrs) participated. They were primarily breast (63%) and blood cancer (26%) survivors, all with clinically elevated ( > 12) Insomnia Severity Index (ISI) scores at baseline. Participants first received a single education session addressing basic sleep hygiene and were reassessed 4 weeks later. Those with an elevated ISI ( > 12) at 4-week follow-up were offered more intense treatment: a 3-session CBT group program developed for cancer survivors. Participants completed the ISI again prior to CBT and 4-weeks post-treatment. Results: Survivors reported significant reductions in insomnia after a single education session; mean ISI scores fell 5.8 points (p < .001), and 23 of 43 survivors (54%) no longer had clinically elevated ISI scores. Of the 20 survivors with persistent insomnia, 9 have received CBT to date and shown similar improvement; their mean ISI scores fell 6.4 points (p = .006), and 6 (67%) no longer had clinically elevated ISI scores. Both treatments had large effect sizes (d = 1.2). Conclusions: Results support a stepped-care approach to treating survivors’ insomnia. A brief sleep hygiene intervention has important dissemination implications, as it may be delivered by non-specialists or as a mobile intervention. For survivors needing more intensive treatment, a short-duration group CBT intervention is effective while requiring fewer resources than standard CBT insomnia treatment. This ongoing trial will investigate how treatment gains in both groups are maintained over three-month follow-up, and explore what factors may predict response to low-intensity treatment. Clinical trial information: NCT02756390.
Implementation of an electronic patient reported outcome system in a prostate cancer urology clinic.
Authors: Spillane Maria , Pollock Phil , Hedden Lindsay , Wu Eugenia , Goldenberg Larry , Jones Jennifer M. , Matthew Andrew , Truong Tran , Gavrylyuk Yuliya , Higano Celestia S.
Published: May 2018

143

Background: The Prostate Clinic at Vancouver General Hospital recently implemented electronic Patient Reported Outcomes (ePRO) collection from prostate cancer patients (pts). The ePRO system was adopted from the University Health Network, Toronto. Our objective was to review the successes and challenges related to the implementation of the system during its first 6 months of use. Methods: All newly diagnosed pts, those going for a prostate biopsy, and pts booking surgery are asked to complete ePRO on iPads at their clinic appointment. The ePRO includes the EPIC-26, EQ-5D-5L, WHODAS 2.0 questionnaires and the Distress Thermometer. It takes about 4-5 minutes to complete the questions, and consent to be contacted about future prostate cancer research is also requested. Afterwards, pts complete ePROs at each clinic appointment. They receive a report summarizing that day’s responses in the context of previous responses. Results: Between 4-1-17 and 10-16-17, 360 pts were eligible to complete the ePRO. 311/360 pts (86.4%) filled out the ePRO at least once. Of the 49 who didn’t, 24 were missed by the coordinator and 21 were not referred by clinic staff. Only 4 pts (8.2%) refused to answer the ePRO. 18 of the 311 pts only partially answered the ePRO, most often due to the length of the questionnaires. 396 instances of ePRO were completed by 311 pts. WiFi connectivity issues were encountered 30/396 times, which prolonged ePRO completion time, and on 3 occasions resulted in patients refusing to complete ePRO. Conclusions: Implementation of the ePRO system into our urology clinic is a success based on a high completion and low refusal rate, and was organized mainly by a single individual. Challenges include training clinic staff to refer pts to complete ePROs at appropriate times, technical difficulties with WiFi connectivity, and the need to interact with each pt individually, which can be time consuming and result in lost data. Eventually, all pts will be trained to pick up an iPad and complete ePROs prior to each appointment. We found the system straightforward to use, and have updated our iPads with additional questionnaires. It is clear that systems collecting ePROs will become standard practice as technology improves and costs go down.
"Getting to know you and your child" screening questionnaire: Results from a Chicago-based collaborative.
Authors: Weldon Christine B. , Roggenkamp Betty , Owen Erika D , Reichek Jennifer , Stewart Zayda , Trosman Julia Rachel , Dighe Dipti , Iqbal Asneha , Suh Eugene , Berardi Rosa , Ganesan Rani , Choi Daniel K. , Henderson Tara O.
Published: May 2018

150

Background: In 2013 the Institute of Medicine recommended that supportive oncology services be initiated at time of cancer diagnosis. Providers of pediatric cancer care in the Chicago metro area, supported by The Coleman Foundation, created and pilot tested a standard psycho-social stressors screening instrument for children with cancer and their families. Methods: The collaborative conducted structured review of tools: Psychosocial Assessment Tool (PAT), Social Work Assessment Tool (SWAT), National Comprehensive Cancer Network (NCCN) Problem List, and √IN; and collected input from social workers and oncology providers on stressors throughout the care continuum. The resulting tool was piloted in English and Spanish at 7 pediatric cancer hospitals. Providers qualitatively reported assessment of its usefulness. Results: Patients/family (n = 57) completed the “getting to know you and your child” instrument which inquired about caregivers, siblings, child’s likes/hobbies, school situation, SSI/SNAP, challenges, and cultural/religious preferences. Providers reported that almost all families found the tool useful “to think about support needs”; one said it was invasive. The tool assessed 12 psychosocial stressors; the mean per patient/family was 2.49 (range 0-11). The most frequent stressors were support from friends, family, community (30%), paying for food (26%), job flexibility (26%), school concerns (25%), emotional support for family (25%), and medical costs (23%). All who reported temporary housing also reported difficulty paying for a place to live (p < 0.0001). Providers reported that the standard tool generated new insight into family structures, challenges and needs informing resolution efforts. Provider recommended adjustments: simplify terms for siblings, hobbies and spiritual, adding question about pets in the home. Conclusions: Pilot testing of a psycho-social screening tool for pediatric and adolescent oncology informed providers of patient/family needs in a standard manner. Four of the seven sites involved in the pilot are now implementing this tool as a standard practice; the remaining sites are performing analyses on how to incorporate the tool into their care processes.
Correlates of anxiety and depression in chronic lymphocytic leukemia (CLL) survivors.
Authors: Williams AnnaLynn , Yarosh Rina , Clark Jackson , Casulo Carla , Barr Paul M. , Kamen Charles Stewart , van Wijngaarden Edwin , Zent Clive , Janelsins Michelle Christine
Published: May 2018

153

Background: CLL is an indolent lymphoma effecting aging populations. Early stage patients are assigned to active surveillance and only 10% of patients require treatment at diagnosis. Active surveillance for CLL may increase susceptibility to anxiety and depression, resulting in enhanced comorbidities and reduced quality of life. However, little is known about the prevalence and risk factors of anxiety and depression in CLL. Methods: 125 CLL patients that were treatment naïve (n = 86) or previously chemotherapy-treated (n = 39) completed anxiety and depression questionnaires (State Trait Anxiety Index (STAI) and Center for Epidemiologic Studies Depression (CES-D)). Multivariable linear regression was used to examine associations with STAI/CES-D score. Logistic regression was used to examine clinically meaningful anxiety and depression, using validated cut points of 40 for the STAI and 16 (or on antidepressants) for the CES-D. All models included treatment status (treatment naïve vs. treated), age, gender, ECOG grade, time since diagnosis, education, & disease stage. Results: Patients had a median age of 65, were mostly male (60.8%), Caucasian (96%), well educated (55% ≥ college), and had low stage CLL (66% stage 0) and good performance status (67% ECOG 0). 20 and 24% of patients had clinically meaningful anxiety or depression (11% had both). Treatment and time since diagnosis were not associated with anxiety or depression. Older age was associated with better STAI and CES-D scores (STAI β = -0.34 (95%CI -0.52, -0.17) CES-D β = -0.27 (95%CI -0.42, -0.12)), and each 1 year increase in age was associated with a 9% decrease in odds of anxiety and a 7% decrease in odds of depression (OR 0.91(95%CI 0.86, 0.96) OR 0.93 (95%CI 0.88, 0.98) respectively). An ECOG grade of 3 or 4 was a significant predictor of increased depression risk (OR 2.84 (95%CI 1.03, 7.82)) and worse CES-D scores (β = 4.69 (95%CI 8.09, 1.29)) but not of anxiety. Conclusions: Anxiety and depression are common among CLL patients. Poor performance status was associated with more depression while older age was associated with less anxiety and depression. Future studies should investigate potential interventions for anxiety and depression in younger CLL patients.
Development of a digital patient navigation application: Preliminary results from patient interviews.
Authors: LeBlanc Thomas William , Herring Kris , Chilcott Jack , Bletcher Katherine , Osaka Miya , Manassei Hugo , Pendergraft Trudy , Corbett Cheyenne , Zafar Yousuf , Higgins Adam , Patierno Steven R.
Published: May 2018

161

Background: People living with cancer face challenges too numerous to attend to during brief clinic visits, and thus may benefit from additional help with supportive care needs. While patient navigators offer promise, they are a limited resource. Digital navigation offers a scalable solution, to extend navigators’ reach and connect patients with existing resources, thereby enhancing our ability to address unmet needs. Methods: Utilizing a “design thinking” approach, we developed and tested a digital navigation platform to enhance utilization of support resources in the Duke Cancer Institute (DCI). The alpha version of the application (app) was based upon insights gleaned from interactions with patients, caregivers, advisory board members, and staff. It was then tested among adult patients with advanced cancer at the DCI. Subjects participated in qualitative interviews with design/content experts, to elicit supportive care needs and gauge interest in utilizing the app to improve their care experiences. Detailed notes were taken, and emerging themes compiled. Results: We enrolled 10 patients and caregivers. Subjects reported feeling overwhelmed by information, feeling that “they don’t know where to start when looking for support.” They also expressed uncertainty about what questions to ask, and said they are not always comfortable asking for help. All struggled to define “supportive care;” only one knew it refers to a set of services. Subjects felt a digital navigation app would enable them to explore and access services as needed, to help them “feel less alone,” and to know “someone or something was there for them.” They expressed dislike for being asked lots of questions, wanting to explore options on their own instead of being led somewhere. Digital navigation has the promise to increase their sense of control, with one subject noting: “I like to know what my options are and decide for myself…people try to assume they know what you need all the time.” Conclusions: Digital supportive care navigation may be an effective, scalable, and cost-efficient intervention to support patients and caregivers, and ultimately improve outcomes. Further refinement and testing of this approach is needed.
Psychosocial outcome and health-related quality of life (HRQoL) in advanced melanoma survivors.
Authors: Rogiers Anne , De Cremer Jennifer , Ben Salama Laila , De Ridder Mark , Bernheim Jan Louis , Neyns Bart , Theuns Peter
Published: May 2018

162

Background: An increasing proportion of advanced melanoma patients (pts), treated with immune checkpoint inhibitors and/or BRAF/MEK-inhibitors, achieve long-term survival. The traumatic experience of melanoma progression, which often involves the brain, puts them at high risk for emotional and neurocognitive function (NCF) disturbances that may negatively impact their HRQoL. Methods: Pts with advanced melanoma (AJCC stages IIIC or IV) who were in remission for at least 1 year after treatment initiation were included in this ongoing single-center therapeutically non-interventional clinical trial. Data on psychosocial outcome and HRQoL were collected using 6 validated questionnaires, a semi-structured psychiatric examination (SSPE) and a computer based neuro-cognitive function (NCF) test. Results: Test results from the first 24 pts (9M/15F; median age 58y (29-87) were analysed. Mean EORTC Global Health Score was significant lower than the European Mean (t[23]=2.713, p= 0.006). The SSPE revealed that all pts reported fear of recurrence; 19 pts (79%) suffered from feelings of insecurity with daily worrying about the disease, associated with a fear of dying. Irritability was a prominent complaint in 18 pts [75%]). Twelve pts (50%) received a message of no hope at diagnosis of metastatic disease which had a persistent major psychological impact. Suicidal ideation occurred in 3 pts (13%), 1 pt (4%) made a suicide attempt (in the absence of depression). Nine pts (38%) reported worrying about their family, 4 pts (17%) had relational problems and 7 pts (29%) had financial problems related to the disease. Despite frequent fatigue complaints, only 4 pts (17%) had mild excessive sleepiness on the Epworth Sleepiness Scale and 9 pts (38%) on the Fatigue Severity Scale. The HADS results indicated a greater occurrence of anxiety compared to depression (NA=10, ND=6). Twenty pts (83%) reported memory complaints, but only 7 pts (29%) had elevated scores on the Cognitive Failure Questionnaire (CFQ). Conclusions: Advanced melanoma survivors are at risk of emotional and neurocognitive disturbances impacting on their HRQoL. Timely detection of psychosocial and neurocognitive problems and adapted care are indicated.
Distress screening, intervention, and follow-up outcomes among Hispanic and Caucasian women with newly diagnosed breast cancer.
Authors: Shay Rebecca C. , Britt Gregory Joseph
Published: May 2018

163

Background: We describe acceptance and impact of mental health (MH) interventions provided to an English speaking Caucasian and Spanish speaking Hispanic female breast cancer (BC) population reporting symptoms of depression and anxiety. Methods: Records of 170 women with newly diagnosed BC at Cancer Centers of Colorado at SCL Health/Saint Joseph Hospital in 2015 were retrospectively assessed for record of a distress screening questionnaire (DSQ), administered in each patients’ native language. Among patients who reported psychosocial distress (PD), records were reviewed for an outreach phone call and visit with social work (SW) or MH, new antidepressant or anxiolytic prescription, and completion of a second DSQ. SCL Health IRB approval obtained. Results: Of 170 subjects, 94 (68% (n = 64) Caucasian, 19% (n = 18) Hispanic, 13% (n = 12) other) completed an initial DSQ. Scores reflecting PD were seen in 57 DSQs; 15 were high-grade PD (HPD). Nearly half (49%; n = 28) of those with PD had been called by MH or SW; 93% (n = 14) with HPD were called. Anxiety scores (AS) improved in 78% (n = 18) and depression scores (DS) in 74% (n = 17) of subjects called. AS and DS improved in 67% (n = 8) and 75% (n = 9), respectively, of Caucasian patients and in 89% (n = 8) and 67% (n = 6) of Hispanic patients called. Of 35 patients who completed follow-up DSQ, 17 visited with MH or SW. AS and DS improved in 65% (n = 11) of these. Improved AS and DS were seen in 38% (n = 3) and 63% (n = 5) of Caucasian patients, respectively, and 88% (n = 7) and 63% (n = 5) of Hispanic patients who had a visit. An antidepressant or anxiolytic was prescribed for 7 patients; AS and DS improved for 33% (n = 1) of Caucasian patients and 67% (n = 2) of Hispanic patients given prescriptions. Conclusions: Outreach to patients with PD and HPD correlated with improved AS and DS. Hispanics were more likely than Caucasians to accept a visit from MH or SW and were more likely to improve AS and DS following a visit with these services or antidepressant or anxiolytic prescription, demonstrating the importance of intervention in this group. This study does not account for patients’ initial staging, progression or regression, therapy pursued, nor presence of other psychosocial concern.
Pathway to support and growth: Feasibility of formalized peer mentoring in gynecologic cancer survivorship.
Authors: Lee Nita Karnik , Anderson Diane , Hlubocky Fay J.
Published: May 2018

164

Background: Peer support among cancer patients is understudied. Formal peer mentoring programs matching patients with survivor peers provides emotional and social support. Gynecological cancer patients are: underserved in the survivorship community, stigmatized due to disease, suffer elevated distress. Little is known on how to design and implement a formal peer support program for gynecologic cancer. Methods: To study the effect of peer support, a novel outpatient pilot peer support program for gynecologic cancer patients was implemented. Peer mentors had prior gynecologic cancers, completed treatment 1 year prior, and had formal 6 hour training. Newly diagnosed patients were matched with a peer at: 1) initial diagnosis 2) post-surgery 3) chemotherapy/radiation initiation 4) post treatment. Patients and Peers were matched based upon demographics. Qualitative individual and group interviews were used for program evaluation. Results: To date, 38 participants are enrolled: 17 peer mentors underwent training and 21 new patients were matched with mentors. Mentor demographics include: Mean age 61.8 (range 48-80), median 62. Ethnicity 65% CA, 30% AA, 5% Latina. Diagnoses were 47% endometrial, 12% cervical and 41% ovarian cancers. 65% of mentors have been matched with patients. Majority of pairs communicated via phone followed by face-to-face encounters. Qualitative program evaluation by mentors revealed barriers including: new patient resistance, readiness, distress. Matched mentors reported themes associated with advocacy, positive patient interactions, personal growth and satisfaction, greater sense of purpose due to their mentor role. Mentors expressed desire for future programs in inpatient/ infusion settings and group education. Programmatic challenges identified included inconsistent provider referrals, matching to disease site/stage, patient readiness to participate as mentees, and management of disease recurrence in mentors. Conclusions: Formalized peer mentoring program is feasible, offers a novel approach to providing psychosocial support for newly diagnosed patients and provides mentors a pathway for positive growth as survivors.
Bringing a creative writing intervention for young adult cancer survivors online.
Authors: Casperson Mallory C , Peckham Jennifer
Published: May 2018

166

Background: Studies show the importance of age-specific, young adult cancer (YAC) psychosocial interventions. They demonstrate psychological interventions “reduce emotional stress and increase coping skills needed to adjust to life after a cancer diagnosis."(Peckham JL, et al. JAYAO. 2017;6:50-52.) With YAC survivors spread around the country, many lack access to such interventions. This feasibility study considered online delivery of a structured, long term writing intervention in YAC survivors and the perceived participant benefit. Methods: Lacuna Loft held three structured, creative writing workshops over 10 weeks, 10 weeks, and 8 weeks. An online video chat platform delivered the workshops, allowing participant connection via video and voice. The workshop followed the methods used in Unspoken Ink.(Peckham JL, et al. JAYAO. 2017;6:50-52.) Each week used a different cancer topic and several prompts were given. Participants completed questionnaires at the start and end of each workshop. Results: Over three writing workshops, twenty-one people completed a workshop, five participated in multiple, and ninety expressed interest in future workshops. People from nine states and three countries participated. The online platform allowed writers to join from any location including the hospital. Participants expressed a decrease in feelings of isolation at the completion of a workshop as well as an increase in feelings of connection to other YAC survivors. All participants stated they would refer another YAC survivor to the workshop. The online nature of the program proved inconsequential. Conclusions: Research shows that structured writing workshops for YAC survivors “to explore their cancer experiences may be an effective psychosocial intervention.”(Peckham JL, et al. JAYAO. 2017;6:50-52.) This study used online video chat platform to deliver the workshop and connect participants. All participants expressed decreased feelings of isolation and increased feelings of connection to their YAC survivor peers at the conclusion. Most had never participated in an online group previous to this online workshop. Online delivery of structured writing interventions thus allows for more wide-spread accessibility of psychosocial interventions for YAC survivors.
The unmet needs of GI cancer patients: A call to action.
Authors: Raymond Martha ,   GI Cancers Alliance
Published: May 2018

167

Background: Gastrointestinal (GI) cancers are the most common and deadliest type of cancer in the United States. Understanding the need for increased GI cancer patient education, the GI Cancers Alliance created an online unmet needs survey with goals that included: determining gaps in support services, better understanding needs in patient education, and gaining insight into psychosocial concerns. Methods: 507 GI cancer survivors completed the anonymous survey. The qualitative/quantitative survey was open for a 6 week period during October & November 2016. Survey respondents reported being diagnosed with one of the following GI cancer primary tumor types: Esophagus (6%), Liver (8%), Bile Duct (7%), Pancreas (6%), Gallbladder (2%), Stomach (16%), Ileum (3%), Appendix (3%), GI Carcinoid Tumor (2%), Colon (25%), Rectum (13%), Anus (6%), Did not know primary location (3%). Results: Of the 507 respondents, 84% of patients/survivors reported difficulty adjusting to a new normal as a GI cancer survivor. 59% reported they did not have adequate support (family, friends, professional, spiritual or thru advocacy organizations) to help cope with their diagnosis. Anxiety (67%), Fear (66%) and Depression (59%) were common emotions reported during the cancer continuum. Less than half (40%) of respondents described themselves as empowered patients, comfortable advocating for themselves regarding their healthcare and treatment decisions. 92% of patients surveyed did not have a Survivorship Care Plan (SCP). More than half (52%) of all respondents had not heard of or didn’t know the purpose of having a SCP. Conclusions: Our data underscores the unmet needs of GI cancer survivors, including gaps in support services and patient education. As an initial step to help meet these needs, we created a customizable SCP specific to GI cancers and will launch an online GI Cancer Resource Library. Future directions include systematic distribution of the SCP and continued expansion of GI cancer education and empowerment initiatives.
A brief intervention for chemobrain: Results from a pilot study.
Authors: Bennett Jennifer
Published: May 2018

171

Background: Up to 75 percent of breast cancer survivors (BCS) who were treated with chemotherapy report difficulty with cognition, including word finding problems and an inability to attend or multitask. The phenomenon of chemotherapy-related cognitive impairment is often referred to as “Chemobrain.” Chemobrain negatively affects one’s family and social and professional lives. In addition, anxiety and depression – commonly found in breast cancer survivors –negatively affect one’s cognition. An intervention for chemobrain needs to also address these psychological disorders in order to increase the quality of life of BCS. Methods: BCS who completed chemotherapy in the past 5 years and complained of subsequent cognitive decline were recruited for an intervention that included mindfulness and cognitive rehabilitation. Mindfulness has been shown to help with attention and to decrease depression and anxiety. The intervention was given in a class setting and met once/week for 1.5 hours for 6 weeks. Participants completed a brief neuropsychological battery pre- and post-intervention. Results: Immediately post-intervention, all participants (n = 11, mean age = 53.7 years, 100% female) reported increased cognitive functioning as measured by FACT-Cognitive Function, with a mean increase of 27.7 points (p < 0.01, d= 1.82). Ninety-one percent of participants reported decreased depression as measured by PHQ-9, with a mean decrease of 4.7 points (p = 0.02, d= 0.82). These improvements were sustained 3 months post-intervention in cognitive functioning (p < 0.01, d= 2.04) and depression (p < 0.01, d = 1.39). Improved performance was also found in verbal fluency (p = 0.02, d= 0.87) and executive functioning as measured by Trail Making Test B (p = 0.02, d= 0.82). No improvement was detected in verbal learning or processing speed. Conclusions: Breast cancer survivors with chemobrain can recover cognitive functioning and decrease levels of depression relatively quickly with an intervention that combines mindfulness and cognitive rehabilitation. This recovery can be sustained for at least 3 months post-intervention. Additional research is needed to investigate how long recovery can be maintained and if the same intervention can help other cancer survivors.
The influence of an androgen deprivation therapy educational program on dyadic quality and intimacy for prostate cancer patients and their partners.
Authors: Wibowo Erik , Wassersug Richard J , Robinson John W , Matthew Andrew , McLeod Deborah L , Walker Lauren M
Published: May 2018

178

Background: Androgen deprivation therapy (ADT) is a common treatment for advanced prostate cancer (PCa), but ADT typically impairs men’s sexual function and couples’ relationships. We offer an educational program to help PCa patients and their partners manage ADT related side effects and to maintain a strong dyadic relationship while the patient is on ADT. Methods: Patients and partners attended a one time 1.5 hour ADT Class. Patients received a copy of the book Androgen Deprivation Therapy: An essential guide for men with prostate cancer and their partners (DEMOS Health, NY), which covers how to manage ADT side effects and make healthy lifestyle changes. We emphasize the importance of physical exercise in preventing or reducing many of the side effects of ADT. 79 couples (patients = 68.8±7.5 years old, partners = 64.9±8.8 years old; relationship duration = 34.6±16.4 years) completed the Dyadic Adjustment Scale, the Personal Assessment of Intimacy in Relationships, and the Godin Leisure-Time Exercise questionnaires at baseline and again 2-3 months later to assess their relational intimacy and dyadic quality. At baseline 73% of patients either had not started or been on ADT for < 3 weeks. Results: Attending the ADT Educational Program was associated with improved dyadic adjustment and relational intimacy but age, relationship duration, baseline strain in the relationship and physical exercise all influence these effects. Specifically, dyadic cohesion improved in patients ≥68 years old. Recreational intimacy increased in patients ≤60 years old and for those in a relationship ≥50 years. Recreational intimacy also improved in partners who had been in a 20-49 years relationship or those reporting at baseline little strain in their relationship. Dyadic cohesion was maintained in participants who increased their frequency of physical exercise. For the above results, all P < 0.05. Conclusions: The ADT Educational Program improves dyadic cohesion and relational intimacy for some patients and partners but age, relationship duration, baseline quality of the relationship, and physical exercise frequency appear to influence the effectiveness of the program.
Breast cancer survivors' self-reported outcomes following an end of treatment group intervention.
Authors: Chaput Genevieve , Barrette Maria , DiLalla Vanessa , Williams Tristan , Yu Olivia , Robitaille AndreAnne
Published: May 2018

18

Background: The merit of supporting and educating breast cancer survivors (BCS) about survivorship issues such as cognitive dysfunction, body image concerns and fear of recurrence following treatment completion is well recognized. Though the majority of BCS appear to adjust fairly well in the long term, the transition from active treatments to survivorship is often described as distressing. While individualized interventions are typically not sustainable, group interventions provide an opportunity to inform BCS about potential late and long-term effects from cancer treatments in a supportive environment. BCS were offered an end of treatment educational group intervention (EOT). The EOT consists of a survivorship education session delivered by an MD and RN, a kit containing patient resources, as well as a survivorship care plan (SCP). BCS caregivers are welcomed to attend the EOT. This study aimed to assess BCS’ satisfaction, confidence level in managing their health, and intent to use the information received at the EOT. Methods: 18 EOTs have been provided to 83 BCS (group size range: 4 to 8 BCS, caregiver attendees not included). Participants completed a brief Likert-scale survey on a voluntary basis after the EOT. Variables of interest for included reported satisfaction, confidence and intent to use information received during the EOT. Descriptive statistics were utilized to analyze collected data. Results: Completed surveys were received from 69 participants (response rate 83.1%). To the survey question: “The survivorship information I received was helpful”, 72% (50) and 26% (18) responded strongly agreed and agreed, respectively. The majority of participants reported “Feeling better prepared for the next steps regarding their care” following the EOT (60% (42) strongly agreed; 33% (23) agreed). Lastly, the majority (78%) stated they were “very likely” to use the EOT information. Conclusions: Current evidence has demonstrated the feasibility and patient-related benefits of educational interventions within the field of survivorship. Our results suggest group-based interventions are efficient and effective for addressing the supportive and informational needs of BCS after treatment completion.
Single center experience of dermatologic and oncologic surveillance patterns for late stage melanomas that progressed from early stage melanoma.
Authors: Song Jung Min , Marcus Joel Daniel , Stanek Carolyn , McNamara Michael J. , Gastman Brian , Tarhini Ahmad A. , Funchain Pauline
Published: May 2018

182

Background: Recent data suggests a greater proportion and greater absolute number of thin (T1) melanomas contribute to melanoma death than thicker melanomas (Whiteman et al., J Invest Dermatol 2015). NCCN guidelines for early stage melanoma, defined as stages IA-IIA, suggest at least yearly skin check and H&P, but do not specify if dermatologic and/or oncologic surveillance should be pursued. Methods: We reviewed internal and external records of 16 consecutive patients with new, non-de novo diagnoses of unresectable stage III or IV melanoma undergoing active cancer treatment, i.e. late stage melanoma, from 2016-2017 that had progressed from a preceding primary early stage (IA-IIA) melanoma. Results: Primary early stage melanomas were diagnosed a median of 10.5 years (range, 4 to 29) prior to advanced disease progression. Two of 16 patients (13%) had oncologic follow up. Seven (44%) had continuous dermatology follow-up, of which 6 (38%) were followed only by dermatology. Only one patient had both dermatology and oncology follow-up at the time of progression. Follow up could not be determined for 8 patients due to lack of sufficient records, it is notable however that these 8 (50%) were not following dermatology or oncology at the time of progression. Conclusions: Only a small minority of patients who progressed from early stage melanoma to advanced stage melanoma requiring treatment were followed regularly by medical oncology, despite half having at least regular dermatology follow-up. We conclude that survivorship plans are important for early stage melanomas, and there is a need to effectively educate a larger early stage melanoma population about the infrequent but real oncologic issue of progressing to late stage melanoma.
Increased access for and enhancement of cancer (ca) patients (pts) participation (par) in clinical trials (cts) by alleviation of financial toxicity.
Authors: Mitchell Edith P. , Dornsife Dana
Published: May 2018

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Background: Prognosis for pts is increasing as a result of advances in cts. However, the degree to which cancer caused financial problems may influence ca pts par in cts and negatively impact quality of life. Excess financial burden of cts par, may include finding an appropriate trial, traveling to the trial site, travel costs, lodging and medical expenses. The Lazarex Cancer Foundation (LCF) was founded in 2006 with mission to improve care, giving hope, dignity, and life to advanced ca pts by providing assistance with options and costs to cts par, community outreach, and education. LCF developed processes to removing the barriers to cts par by improving equitable access to cancer care, increasing cts enrollment, retention and minority par, and increasing cts referrals. Methods: To determine the extent of benefit of LCF, we conducted a retrospective analysis of LCF beneficiaries participating in cts by reviewing and summarizing the number of pts, states and countries of residence, age, type of cancer, location and distance to cts site, type of assistance, and number of advocacy/outreach. Results: From 1/01/2010 – 12/31/2016 2179 pts were assisted financially; age range 1-102 yrs, median 50-60; (43%) male, (53%) female, (3.4%) undeclared. (6.4%) were African American, 10.3% Hispanic, 3.6 Asian Pacific Islander, other minority 2.1, and Caucasian 72.7%;total minority 22.5%. Pts resided in 50 states with largest CA , TX , MA , and FL. Cts were at 199 sites – 43 NCI CCC, 7 NCI DCC and 149 other cancer centers. Most common diagnoses were breast, leukemia, colorectal cancers. type tumors. Median household income was $75,000. Financial assistance to travel to and living expenses at the cts site was the most frequently identified need. Conclusions: Relieving pts of financial burden allows greater access to and participation in cancer clinical trials. Further research and greater resources are needed to define patient needs and determine methods to eliminate barriers to enrollment and retention investigate coverage thresholds that minimize adverse financial outcomes and identify ca pts at greatest risk for financial toxicity to increase par in cts.
Impact of immigration status on health behaviors and perceptions in cancer survivors.
Authors: Liu Sophia Yijia , Lu Lin , Balaratnam Karmugi , Pringle Dan , Mahler Mary , Niu Chongya , Naik Hiten , Tiessen Kyoko , Hon Henrique , Brown M Catherine , Selby Peter , Howell Doris , Xu Wei , Alibhai Shabbir M.H. , Jones Jennifer M. , Liu Geoffrey , Eng Lawson
Published: May 2018

27

Background: Health behaviors including smoking cessation, physical activity (PA) and alcohol moderation are key aspects of cancer survivorship. Disparities in health literacy and cancer screening behaviors have been reported between immigrant and native-born cancer patients. However, disparities in health behaviors in cancer survivorship has not been explored. We compared health behaviors and perceptions about these behaviors between immigrant and native-born cancer survivors. Methods: Adult cancer patients from Princess Margaret Cancer Centre (Toronto, Canada) were surveyed on their smoking, PA, and alcohol habits and perceptions of the effects of these behaviors on quality of life (QoL), 5-year survival, and fatigue. Multivariable models evaluated the effect of immigration status on behaviors and perceptions. The effect of originating from a Western vs. non-Western country was also evaluated. Results: Of 1275 patients, 27% self-identified as foreign-born. At 1 year before diagnosis (baseline), 17% smoked, 69% were physically inactive, and 58% consumed alcohol. Although immigration status was not associated with smoking at baseline (P > 0.05), immigrants were less likely to perceive that smoking was harmful on QoL (adjusted odds ratio [aOR] 0.58, P = 0.008), survival (aOR 0.56, P = 0.002), and less so for fatigue (aOR 0.75, P = 0.11). Immigrants were less likely to meet PA guidelines at baseline (aOR = 0.70, P = 0.08), and perceive that PA improved fatigue (aOR 0.62, P = 0.04) and survival (aOR 0.64, P = 0.08). Immigrants were also less likely to drink alcohol at baseline (aOR = 0.47, P = 0.001), but alcohol perceptions did not differ between immigrants and native-born. Those from non-Western countries were less likely to smoke (aOR 0.63, P = 0.03), drink alcohol (aOR 0.48, P = 0.006), or meet PA guidelines at baseline (aOR 0.44, P = 0.006). Conclusions: Immigrants were less likely to perceive continued smoking as harmful and less likely to be aware of the benefits of PA. Patients from non-Western countries were less likely to meet PA guidelines, but were also less likely to smoke or drink at baseline. Culturally tailored counselling should be considered for immigrants who smoke or are physically inactive at baseline.
Evaluating effectiveness in an urban comprehensive cancer survivorship program.
Authors: Berry Emily , Pruitt Sandi , Borton Eric , Rodriguez Aurelio , Argenbright Keith Edward
Published: May 2018

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Background: Advances in early detection and treatment has led to a growing cancer survivor population, many of whom have encountered devastating effects as a result of diagnosis and treatment. While this phase of care represents a distinct opportunity, evidence-based cancer survivorship programs are often only associated with large cancer centers or academic medical centers and are limited in scope because they are costly and poorly reimbursed. Moncrief Cancer Institute established its program using a community-based model to provide a patient-centered solution, offering evidence-based multidisciplinary services to survivors regardless of diagnosis, treatment provider, socioeconomic status, or insurance coverage. To improve sustainability, we intend to advance data available to insurers and policy makers to encourage service reimbursement. We are developing a comprehensive, linked data repository designed to facilitate effectiveness research for our cancer survivorship program. Methods: Focusing on patients affiliated with the safety-net health system, we use their tumor registry as the sampling frame. These data are then matched with the clinical services database for the survivorship program to create an intervention group, participants, and a matched comparison group of nonparticipants. The established cohort is then matched to electronic medical record data from JPS. Results: Data has been extracted and linked at the patient level, and scrubbed and de-identified for analysis. A total of 8,325 cancer patients were identified from the registry, of these 467 were survivorship program participants. Preliminary analysis is comparing participants to nonparticipants and characterizing program participation. Once completed, analysis will extend to surrogate measures for effectiveness, evaluating impact on healthcare utilization and screening/surveillance uptake. Conclusions: Our approach has created a tool to facilitate a better understanding of survivorship care. With this, we can provide novel evidence regarding participation in a comprehensive cancer survivorship program among urban safety-net healthcare system patients and evaluate impact at the patient and healthcare system levels.