Jennifer K. Bernat

Symptom burden and information needs in prostate cancer survivors: a case for tailored long-term survivorship care

To determine the relationship between long‐term prostate cancer survivors’ symptom burden and information needs.

Piloting an abbreviated dignity therapy intervention using a legacy-building web portal for adults with terminal cancer: a feasibility and acceptability study

Jennifer Kim Bernat*, Paul R. Helft, Laura R. Wilhelm, Nancy E. Hook, Linda F. Brown, Sandra K. Althouse and Shelley A. Johns School of Nursing, Indiana University, Indianapolis, IN, USA School of Medicine, Indiana University, Indianapolis, IN, USA Department of Behavioral Medicine and Psychiatry, West Virginia University, Charleston, WV, USA Eskenazi Health, Indianapolis, IN, USA Department of Biostatistics, Indiana University, Indianapolis, IN, USA

Negative information-seeking experiences of long-term prostate cancer survivors

PurposeMany prostate cancer survivors have lasting symptoms and disease-related concerns for which they seek information. To understand survivors’ information-seeking experiences, we examined the topics of their information searches, their overall perceptions of the search, and perceptions of their health information seeking self-efficacy (i.e., confidence in their ability to obtain information). We hypothesized that negative search experiences and lower health information seeking self-efficacy would be associated with certain survivor characteristics such as non-white race, low income, and less education.MethodsThis was a retrospective study using data from the Michigan Prostate Cancer Survivor Study (state-based survey of long-term prostate cancer survivor outcomes, Nu2009=u20092499, response rateu2009=u200938xa0%). Participants recalled their last search for information and reported the topics and overall experience. We conducted multivariable regression to examine the association between survivor characteristics and the information-seeking experience.ResultsNearly a third (31.7xa0%) of prostate cancer survivors (median age of 76xa0years and 9xa0years since diagnosis) reported having negative information-seeking experiences when looking for information. However, only 13.4xa0% reported having low health information-seeking self-efficacy. Lower income and less education were both significantly associated with negative information-seeking experiences.ConclusionsOur findings suggest that many long-term prostate cancer survivors have negative experiences when searching for information, and lower income and less education were survivor factors related to negative information-seeking experiences.Implications for cancer survivorsWe advocate for ongoing, information needs assessment at the point-of-care as the survivorship experience progresses to assess and potentially improve survivors’ quality of life.

Impact of mindfulness training on avoidant coping and advance care planning.

86 Background: Timely end-of-life (EOL) discussions and advance care planning (ACP) are crucial to quality cancer care; however, patients, family caregivers (CGs), and oncologists often avoid these tender conversations. When EOL discussions are avoided, patients are more likely to receive non-beneficial treatment near death and CGs are more likely to experience psychiatric disturbance. Mindfulness meditation facilitates emotional regulation and may enhance adaptive coping necessary for EOL discussions and ACP.nnnMETHODSnMindfully Optimizing Delivery of End-of-Life (MODEL) Care is a within-group pilot study developed to train patients with advanced-stage solid malignancies and their CGs (n=13 dyads) in present-moment awareness and non-reactive coping through a variety of mindfulness practices. Eligible patients met a threshold for avoidant coping and had not completed a Physician Orders for Scope of Treatment (POST) form documenting care preferences. Cognitive avoidance and quality of life (QoL) for patients and CGs were assessed from baseline (T1) to post-intervention (T2) and 1-month follow-up (T3) with standardized response mean (SRM) effect sizes. ACP from T1 to T3 was assessed descriptively.nnnRESULTSnModerate decreases in cancer-related avoidance were found for patients (SRM=-0.47) and CGs (SRM=-0.59) T1 to T2, while T1 to T3 effects were small for patients (SRM=-0.31) and large for CGs (SRM=-1.12). At T1, no patient had completed a POST form; by T3, 50% reported completing one and 40% were preparing to do so soon. At T1, 23% of patients reported having had a goals of care discussion with their oncologist, with 82% doing so by T3. At T1, 46% of patients reported having discussed goals of care with their CGs, with 100% doing so by T3. Large improvements in QoL were found at both time points for patients and CGs (SRMs ranging from 0.85 to 1.21).nnnCONCLUSIONSnMindfulness was associated with mostly moderate reductions in avoidant coping and large improvements in QoL for patients and caregivers, with notable ACP progress for patients.

Addressing personal barriers to advance care planning: Qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers

OBJECTIVEnAdvance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients and families emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement.nnnMETHODnThe Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.ResultFour salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease.Significance of resultsThe MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

MP27-12 DETERMINANTS OF INFORMATION NEEDS IN LONG-TERM PROSTATE CANCER SURVIVORS

Source of Funding: This study was supported by the Agency for Healthcare Research and Quality (1R01HS019356, 1R01HS022640) and the Patient-Centered Outcomes Research Institute (CE-12-11-4667). The data management was facilitated by the use of Vanderbilt University’s Research Electronic Data Capture (REDCap) system, which is supported by the Vanderbilt Institute for Clinical and Translational Research grant (UL1TR000011 from NCATS/NIH).

Creating communicative opportunity: The supportive benefits of legacy building for families of advanced cancer patients.

230 Background: Being diagnosed with advanced cancer is a painful reality that impacts entire families. Families face the challenge of great loss and can regret conversations left unspoken. Dignity therapy (DT) is an empirically supported intervention that gives families communicative opportunity. During DT, terminally ill patients engage in legacy building and create a written project containing their meaningful memories and values. This project is given to the family, succeeding the person in death and providing continuity to those who are left behind. We developed a narrative intervention based on DT that used a novel web portal for project dissemination. This study qualitatively explores the familys reactions to legacy building to learn about its potential for future bereavement support.nnnMETHODSnSemi-structured phone interviews (20-30 minutes) with family members (n=7) of terminally ill cancer patients were completed approximately one week after receiving the legacy project. Recipients were spouses (n=4), siblings (n=2), or an adult child (n=1). Interviews were coded using conventional content analysis and an open-coding strategy. Themes were recorded as they emerged.nnnRESULTSnThree communication themes emerged from the data. Legacy building: (1) facilitates conversation; (2) creates new knowledge and understanding; and (3) leaves lasting communication for future generations. The family members felt overall communication improved before the patient died, and they were able to discuss the terminal nature of their loved ones illness. New knowledge was communicated in the project, which sometimes led to further understanding of personal life events. Also, the project was viewed as a family heirloom to be bequeathed to future generations. All family members stated they would recommend legacy building to others.nnnCONCLUSIONSnThis study adds the unique impact of communication to the literature on the supportive benefit of DT for families of advanced cancer patients. Future research should investigate and quantitatively assess bereavement outcomes for families over time, as well as the direct impact these outcomes have on family members quality of life.

Feasibility and acceptability of a novel web portal to enhance legacy building for adults with advanced cancer.

140 Background: Being diagnosed with advanced cancer is a painful reality encompassing physical, psychosocial, and spiritual challenges as death draws near. Some patients cope resiliently, while others struggle. Dignity therapy (DT) is an empirically supported intervention where patients reflect on meaningful memories and values during interviews. These interviews are transcribed into a legacy project (LP) that can be edited and shared with loved ones. DT has been shown to benefit patients and LP recipients; however, it requires resources to implement and is not widely available in community settings. We developed a narrative intervention based on DT using a novel web portal (ZarpZ) to disseminate the LPs. This pilot assesses the feasibility, acceptability, and efficacy of our intervention to determine if it could be an affordable, user-friendly, and accessible alternative to traditional DT.nnnMETHODSnAdults (n=16) with advanced-stage solid malignancies participated in a therapist-led intervention including (1) a modified DT session; (2) orientation to ZarpZ; and (3) brief weekly phone calls to aid self-led online LP building. We collected baseline and post-intervention data on primary (acceptability) and secondary (existential well-being, dignity, demoralization, peaceful acceptance of illness, and family communication) outcomes.nnnRESULTSn69% of participants completed a LP. Participants reported high satisfaction with the LP created (100%) and with the intervention, particularly the home visit with the interventionist (81%). Participants were less satisfied with ZarpZ-only 45% used it. Among ZarpZ users, 40% reported it as somewhat difficult to use. Our sample was not distressed at baseline; thus, post-intervention secondary outcomes did not significantly differ from baseline.nnnCONCLUSIONSnParticipants found value in the intervention and in the LPs created, but were generally dissatisfied with ZarpZ. Future research should aim to improve usability. Since our sample size was small and participants were not distressed at baseline, we were not able to show significant improvement in secondary outcomes. Future research should examine these outcomes in a larger and more distressed sample.