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Item Acceptance and commitment therapy for breast cancer survivors with fear of cancer recurrence: A 3-arm pilot randomized controlled trial(Wiley, 2020) Johns, Shelley A.; Stutz, Patrick V.; Talib, Tasneem; Cohee, Andrea A.; Beck-Coon, Kathleen A.; Brown, Linda F.; Wilhelm, Laura R.; Monaham, Patrick O.; LaPradd, Michelle L.; Champion, Victoria L.; Miller, Kathy D.; Giesler, R. BrianBackground Fear of cancer recurrence (FCR) has a profound negative impact on quality of life (QOL) for many cancer survivors. Breast cancer survivors (BCS) are particularly vulnerable, with up to 70% reporting clinically significant FCR. To the authors' knowledge, evidence-based interventions for managing FCR are limited. Acceptance and commitment therapy (ACT) promotes psychological flexibility in managing life's stressors. The current study examined the feasibility and preliminary efficacy of group-based ACT for FCR in BCS. Methods Post-treatment BCS (91 patients with stage I-III disease) with clinical FCR randomly were assigned to ACT (6 weekly 2-hour group sessions), survivorship education (SE; 6 weekly 2-hour group sessions), or enhanced usual care (EUC; one 30-minute group coaching session with survivorship readings). FCR severity (primary outcome) and avoidant coping, anxiety, post-traumatic stress, depression, QOL, and other FCR-related variables (secondary outcomes) were assessed at baseline (T1), after the intervention (T2), 1 month after the intervention (T3), and 6 months after the intervention (T4) using intent-to-treat analysis. Results Satisfactory recruitment (43.8%) and retention (94.5%) rates demonstrated feasibility. Although each arm demonstrated within-group reductions in FCR severity over time, only ACT produced significant reductions at each time point compared with baseline, with between-group differences at T4 substantially favoring ACT over SE (Cohen d for effect sizes, 0.80; P < .001) and EUC (Cohen d, 0.61; P < .01). For 10 of 12 secondary outcomes, only ACT produced significant within-group reductions across all time points. By T4, significant moderate to large between-group comparisons favored ACT over SE and EUC with regard to avoidant coping, anxiety, depression, QOL, and FCR-related psychological distress. Conclusions Group-based ACT is a feasible and promising treatment for FCR and associated outcomes in BCS that warrants testing in larger, fully powered trials.Item Acceptance and commitment therapy for patient fatigue interference and caregiver burden in advanced gastrointestinal cancer: Results of a pilot randomized trial(Sage, 2022) Mosher, Catherine E.; Secinti, Ekin; Wu, Wei; Kashy, Deborah A.; Kroenke, Kurt; Bricker, Jonathan B.; Helft, Paul R.; Turk, Anita A.; Loehrer, Patrick J., Sr.; Sehdev, Amikar; Al-Hader, Ahmad A.; Champion, Victoria L.; Johns, Shelley A.; Psychology, School of ScienceBackground: Fatigue often interferes with functioning in patients with advanced cancer, resulting in increased family caregiver burden. Acceptance and commitment therapy, a promising intervention for cancer-related suffering, has rarely been applied to dyads coping with advanced cancer. Aim: To examine the feasibility, acceptability, and preliminary efficacy of acceptance and commitment therapy for patient-caregiver dyads coping with advanced gastrointestinal cancer. Primary outcomes were patient fatigue interference and caregiver burden. Design: In this pilot trial, dyads were randomized to six weekly sessions of telephone-delivered acceptance and commitment therapy or education/support, an attention control. Outcomes were assessed at baseline and at 2 weeks and 3 months post-intervention. Setting/participants: Forty patients with stage III-IV gastrointestinal cancer and fatigue interference and family caregivers with burden or distress were recruited from two oncology clinics and randomized. Results: The eligibility screening rate (54%) and retention rate (81% at 2 weeks post-intervention) demonstrated feasibility. At 2 weeks post-intervention, acceptance and commitment therapy participants reported high intervention helpfulness (mean=4.25/5.00). Group differences in outcomes were not statistically significant. However, when examining within-group change, acceptance and commitment therapy patients showed moderate decline in fatigue interference at both follow-ups, whereas education/support patients did not show improvement at either follow-up. Acceptance and commitment therapy caregivers showed medium decline in burden at 2 weeks that was not sustained at 3 months, whereas education/support caregivers showed little change in burden. Conclusions: Acceptance and commitment therapy showed strong feasibility, acceptability, and promise and warrants further testing.Item Accepting a Terminal Cancer Prognosis: Associations with Patient and Caregiver Quality-of-Life Outcomes and Treatment Preferences(2024-05) Krueger, Ellen; Mosher, Catherine E.; Rand, Kevin L.; Wu, Wei; Hickman, SusanPatients who are aware of their terminal cancer prognosis are more likely to receive end-of-life care consistent with their values. However, prognostic awareness has shown mixed associations with quality of life (QoL) outcomes. Based on theories of acceptance (i.e., Erikson’s stages of life development, Kubler-Ross’s stage model of grief, coping theories) and the Ottawa Decision Support Framework, acceptance of cancer may moderate relationships between prognostic awareness and QoL outcomes and end-of-life treatment preferences. Dyadic coping theories, such as the Systemic Transactional Model and the Dyadic Cancer Outcomes Framework, suggest that patients’ degree of prognostic awareness and acceptance of their illness may also impact their family caregivers’ QoL and end-of-life treatment preferences for the patient. The aim of the present study was to examine the potential moderating role of patient acceptance of cancer in the relationships between patient prognostic awareness and both patient and caregiver QoL and end-of-life treatment preferences. This study was a secondary analysis of cross-sectional data from advanced cancer patients (n = 243) and their caregivers (n = 87) enrolled in the multi-institutional Coping with Cancer-II study. Patient outcomes of physical, psychological, and existential QoL were examined in a moderation path analysis. Caregiver physical and psychological QoL were examined in separate moderation regressions. Patient and caregiver end-of-life treatment preferences were examined in multiple logistic regression moderation models. Results did not support my hypothesis, as patient illness acceptance did not moderate the relationships between patient prognostic awareness and patient and caregiver QoL outcomes and end-of-life treatment preferences. However, there were significant main effects of patient illness acceptance on their own physical, psychological, and existential QoL as well as caregiver psychological QoL. There were also significant main effects of patient prognostic awareness on their own physical QoL and both their own and their caregivers’ end-of-life treatment preferences. Findings suggest that increasing patient’s prognostic awareness and illness acceptance may help improve values-consistent end-of-life care and QoL outcomes in advanced cancer patient-caregiver dyads. Findings support timely conversations to promote advanced cancer patients’ prognostic awareness as well as further research examining the impact of acceptance-based interventions in advanced cancer.Item Adolescent/Young Adult Perspectives of a Therapeutic Music Video Intervention to Improve Resilience During Hematopoietic Stem Cell Transplant for Cancer(Oxford Academic, 2020-02) Haase, Joan E.; Robb, Sheri L.; Burns, Debra S.; Stegenga, Kristin; Cherven, Brooke; Hendricks-Ferguson, Verna; Roll, Lona; Docherty, Sharron L.; Phillips, Celeste; School of NursingThis empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV. Analysis of the narrative data resulted in four theme categories: (a) An Interwoven Experience of the Transplant and TMV Intervention; (b) TMV as a Guided Opportunity for Reflection, Self-Expression, and Meaning-Making; (c) Telling My Story: The Work of Deriving Meaning; and (d) A Way to Overcome the Bad Side of Cancer. AYA suggestions for improving the TMV are also summarized. Findings provide insight into ways the TMV supports AYA efforts to overcome distress and challenges by providing opportunities to reflect on what is meaningful, connect with others, and explore/identify personal strengths. Findings also inform our understanding about how the TMV may have functioned (i.e., mechanisms of action) to bring about significant change in AYA self-reported outcomes (i.e., positive coping, social support, and family function) for this trial.Item American College of Sports Medicine (ACSM) International Multidisciplinary Roundtable report on physical activity and nonalcoholic fatty liver disease(Wolters Kluwer, 2023-03-30) Stine, Jonathan G.; Long, Michelle T.; Corey, Kathleen E.; Sallis, Robert E.; Allen, Alina M.; Armstrong, Matthew J.; Conroy, David E.; Cuthbertson, Daniel J.; Duarte-Rojo, Andres; Hallsworth, Kate; Hickman, Ingrid J.; Kappus, Matthew R.; Keating, Shelley E.; Pugh, Christopher J. A.; Rotman, Yaron; Simon, Tracey G.; Vilar-Gomez, Eduardo; Wong, Vincent Wai-Sun; Schmitz, Kathryn H.; Medicine, School of MedicineBackground and aims: We present findings from the inaugural American College of Sports Medicine (ACSM) International Multidisciplinary Roundtable, which was convened to evaluate the evidence for physical activity as a means of preventing or modifying the course of NAFLD. Approach and results: A scoping review was conducted to map the scientific literature and identify key concepts, research gaps, and evidence available to inform clinical practice, policymaking, and research. The scientific evidence demonstrated regular physical activity is associated with decreased risk of NAFLD development. Low physical activity is associated with a greater risk for disease progression and extrahepatic cancer. During routine health care visits, all patients with NAFLD should be screened for and counseled about physical activity benefits, including reduction in liver fat and improvement in body composition, fitness, and quality of life. While most physical activity benefits occur without clinically significant weight loss, evidence remains limited regarding the association between physical activity and liver fibrosis. At least 150 min/wk of moderate or 75 min/wk of vigorous-intensity physical activity are recommended for all patients with NAFLD. If a formal exercise training program is prescribed, aerobic exercise with the addition of resistance training is preferred. Conclusions: The panel found consistent and compelling evidence that regular physical activity plays an important role in preventing NAFLD and improving intermediate clinical outcomes. Health care, fitness, and public health professionals are strongly encouraged to disseminate the information in this report. Future research should prioritize determining optimal strategies for promoting physical activity among individuals at risk and in those already diagnosed with NAFLD.Item Are Burns a Chronic Condition? Examining Patient Reported Outcomes up to 20 Years after Burn Injury – A Burn Model System National Database Investigation(Wolters Kluwer, 2022) Abouzeid, Cailin A.; Wolfe, Audrey E.; Ni, Pengsheng; Carrougher, Gretchen J.; Gibran, Nicole S.; Hammond, Flora M.; Holavanahalli, Radha; McMullen, Kara A.; Roaten, Kimberly; Suman, Oscar; Stewart, Barclay T.; Wolf, Steven; Zafonte, Ross; Kazis, Lewis E.; Ryan, Colleen M.; Schneider, Jeffrey C.; Physical Medicine and Rehabilitation, School of MedicineBackground: People living with burn injury often face long-term physical and psychological sequelae associated with their injuries. Few studies have examined the impacts of burn injuries on long-term health and function, life satisfaction, and community integration beyond 5 years postinjury. The purpose of this study was to examine these outcomes up to 20 years after burn injury. Methods: Data from the Burn Model System National Longitudinal Database (1993-2020) were analyzed. Patient-reported outcome measures were collected at discharge (preinjury status recall) and 5 years, 10 years, 15 years, and 20 years after injury. Outcomes examined were the SF-12/VR-12 Physical Component Summary and Mental Component Summary, Satisfaction with Life Scale, and Community Integration Questionnaire. Trajectories were developed using linear mixed models with repeated measures of outcome scores over time, controlling for demographic and clinical variables. Results: The study population included 421 adult burn survivors with a mean age of 42.4 years. Lower Physical Component Summary scores (worse health) were associated with longer length of hospital stay, older age at injury and greater time since injury. Similarly, lower Mental Component Summary scores were associated with longer length of hospital stay, female sex, and greater time since injury. Satisfaction with Life Scale scores decrease negatively over time. Lower Community Integration Questionnaire scores were associated with burn size and Hispanic/Latino ethnicity. Conclusion: Burn survivors' physical and mental health and satisfaction with life worsened over time up to 20 years after injury. Results strongly suggest that future studies should focus on long-term follow-up where clinical interventions may be necessary.Item Assessing quality of life after pulmonary embolism: Comparing results from the PEmb-QoL with semistructured interviews(Elsevier, 2022-06-19) Hernandez-Nino, Jackeline; Ott, Mary A.; Thomas, Mary; Alexander, Andreia B.; Kline, Jeffrey A.; Emergency Medicine, School of MedicineBackground: The Pulmonary Embolism Quality of Life questionnaire (PEmb-QoL) assesses quality of life (QoL) in patients with previous pulmonary embolism (PE). Objective: Our aim was to assess the agreement between the PEmb-QoL and interviews and to explore other QoL concerns in patients diagnosed with PE. Methods: This mixed-method study included interviews with 21 patients about QoL after PE, followed by the PEmb-QoL questionnaire. In interviews, patients were asked about their lived experiences and impact of PE. Our analysis identified the frequency and severity of decreased QoL in qualitative interviews and compared with the PEmb-QoL score. Excerpts that described the effect of PE on QoL in interview transcripts were transcoded to match the answers corresponding to the 1 to 6 numeric values for each question from the PEmb-QoL using a predetermined matrix (eg, "constant" and "daily" = all of the time = value 1) and directly compared with responses on the PEmb-QoL in the areas of emotional complaints and activities of daily living/social limitations. Results: Interviews showed more functional impairment than predicted by PEmb-QoL. For fear of recurrence, 86% of participants had disagreements between PEmb-QoL scores and transcoded interview scores. We found 42% disagreement between reported descriptions of the inability to do or enjoy hobbies in interviews and the PEmb-QoL score. Conclusion: Patient interviews showed discordances compared with a validated psychometric tool. To capture a more detailed and accurate picture of the effect of PE on QoL, providers and researchers should consider the addition of qualitative methods to assess outcomes.Item Assessing quality of life in Alzheimer's disease: Implications for clinical trials(Elsevier, 2016-12-13) Kahle-Wrobleski, Kristin; Ye, Wenyu; Hake, Ann Marie; Siemers, Eric; Chen, Yun-Fei; Liu-Seifert, Hong; Department of Psychiatry, IU School of MedicineIntroduction Characterization of the quality of life (QOL) in Alzheimer's disease (AD) scale within the context of a clinical trial may inform its applicability in future trials. Methods Using data from 1322 patients enrolled in two phase-III studies (EXPEDITION 1 [NCT00905372] and 2 [NCT00904683]) of intravenous solanezumab in outpatients with mild AD dementia, correlations between patient- and caregiver-assessed QOL and between QOL and clinical outcome measures were examined. Longitudinal effects of solanezumab over 80 weeks were explored, controlling for patient and caregiver baseline characteristics. Results Caregivers rated patients' QOL worse than did patients themselves. Patients' QOL was correlated, albeit modestly, with clinical/health measures. Patients' QOL changed minimally over 80 weeks, although a treatment effect of solanezumab on QOL was detected. Discussion Further investigations are needed to determine the optimal measures with which to quantify and qualify QOL of patients with mild AD.Item Assessing the Importance and Value of Events for Indianapolis Using Willingness to Pay(2023-08) Burke, Michael; Pierce, David; Liu-Lastres, Becky; Sherman, GeoffreHaving the support of the local community is vital to having events go well. This study is needed to better understand the value of the current events and event types to be able to bring better events to Indy. This study used the contingent valuation to measure the willingness to pay for a variety of events held in Indianapolis and then assessed the difference between them while including identity and quality of life factors as additional variables. An online questionnaire was used to gather responses for all the variables. Event type and sports identity were significant variables impacting the willingness to pay to attend.Item The association between cancer care coordination and quality of life is stronger for breast cancer patients with lower health literacy: A Greater Plains Collaborative study(Springer, 2020) McDowell, Bradley D.; Klepm, Jennifer; Blaes, Anne; Cohee, Andrea A.; Trentham-Dietz, Amy; Kamaraju, Sailaja; Otte, Julie L.; Mott, Sarah L.; Chrischilles, Elizabeth A.Purpose Health literacy (HL) and cancer care coordination (CCC) were examined for their relationship to quality of life (QOL) among breast cancer survivors. CCC was hypothesized to have a stronger relationship to QOL for women with lower HL. Methods Women (N = 1138) who had completed treatment for Stage 0–III, ductal carcinoma breast cancer between January 2013 and May 2014 at one of eight large medical centers responded to a mailed questionnaire. Responses to questions about survivorship care planning and presence of professional care coordinator were combined to form an index of CCC. An index of HL was also derived. QOL was measured using the Functional Assessment of Cancer Therapy-Breast (FACT-B) scales. Results 74.3% (N = 845) of patients reported having a health professional coordinate their care during treatment and 78.8% (N = 897) reported receiving survivorship care planning. CCC was classified as none, partial, or high for 7.1%, 32.7%, and 60.2% of the patients, respectively. Except for emotional well-being, the interaction between HL and CCC was significant for all QOL domains (p < .05); the effect of CCC on FACT-B scores was largest for people with lower HL. For the 39.8% of patients with less than high CCC, 111 (27.3%) had a level of HL associated with clinically meaningful lower QOL. Conclusions The association between CCC and later QOL is strongest for people who have lower HL. Prioritizing care coordination for patients with lower health literacy may be an effective strategy in a setting of limited resources.