Search

BackgroundDespite the availability of effective medications and clinical guidelines for pain management, pain control is suboptimal in a sizeable proportion of patients with cancer pain. The National Comprehensive Cancer Network guidelines recommend a comprehensive and multimodal approach for management of cancer pain. We developed a mobile phone application, ePAL, based on clinical guidelines to empower patients for cancer pain management by prompting regular pain assessments and coaching for self-management. ObjectiveThe objective of this study is to evaluate the effect of a multidimensional mobile phone-based pain management application, ePAL, on controlling cancer pain and improving quality of life in patients with cancer pain being treated at an academic palliative care clinic. MethodsThe study will be implemented as a 2-arm randomized controlled trial with 110 adult patients with CP who own a mobile phone over a follow-up period of two months. Participants will be randomized to either the intervention group receiving ePAL and usual care or to a control group receiving only usual care. The brief pain inventory will be used to assess our primary outcome which is pain intensity. We will also evaluate the effect of the intervention on secondary outcomes which include the effect of the intervention on hospital utilization for pain crisis, quality of life, adherence to analgesic medications, barriers to pain control, anxiety and patient engagement. Instruments that will be used in evaluating secondary outcomes include the Brief Pain Inventory, Morisky Medication Adherence Scale, Barriers Questionnaire-II, Functional Assessment of Cancer Therapy–General, Edmonton Symptom Assessment System, Generalized Anxiety Disorder 7-item scale, and the Functional Assessment of Chronic Illness Therapy-Fatigue. The intention-to-treat approach will be used to evaluate outcomes. Our primary outcome, pain intensity, measured longitudinally over eight weeks, will be assessed by mixed model repeated analysis. Effect sizes will be calculated as mean group differences with standard deviations. ResultsThe study is still in progress. We hope to have results by the end of 2015. ConclusionsThe multidimensional approach to pain management implemented on a mobile phone application could lead to significant improvements in patient outcomes. Trial RegistrationClinicalTrials.gov NCT02069743; https://clinicaltrials.gov/ct2/show/NCT02069743 (Archived by WebCite at http://www.webcitation.org/6Qb65XGGA).

ObjectiveTo describe the perceived qualities of successful palliative care (PC) providers in the emergency department (ED), barriers and facilitators to ED-PC, and clinicians' perspectives on the future of ED-PC.MethodThis qualitative study using semi-structured interviews was conducted in June-August 2020. Interviews were analyzed via a two-phase Rapid Analysis. The study's primary outcomes (innovations in ED-PC during COVID) are published elsewhere. In this secondary analysis, we examine interviewee responses to broader questions about ED-PC currently and in the future.ResultsPC providers perceived as successful in their work in the ED were described as autonomous, competent, flexible, fast, and fluent in ED language and culture. Barriers to ED-PC integration included the ED environment, lack of access to PC providers at all times, the ED perception of PC, and the lack of a supporting financial model. Facilitators to ED-PC integration included proactive identification of patients who would benefit from PC, ED-focused PC education and tools, PC presence in the ED, and data supporting ED-PC. Increased primary PC education for ED staff, increased automation, and innovative ED-PC models were seen as areas for future growth.Significance of resultsOur findings provide useful information for PC programs considering expanding their ED presence, particularly as this is the first study to our knowledge that examines traits of successful PC providers in the ED environment. Our findings also suggest that, despite growth in the arena of ED-PC, barriers and facilitators remain similar to those identified previously. Future research is needed to evaluate the impact that ED-PC initiatives may have on patient and system outcomes, to identify a financial model to maintain ED-PC integration, and to examine whether perceptions of successful providers align with objective measures of the same.

Teenage siblings of children with autism spectrum disorder (ASD) are at risk of worse mental health outcomes than their peers, yet there have been few interventions focused on improving their psychosocial wellbeing. This study explored the acceptability of an 8-session virtual group mind-body resiliency intervention for teen siblings of children with ASD. We used mixed methods to assess quantitative and qualitative survey results. Participants reported that the intervention had the right amount of sessions (88%), structure (74%), and duration (89%). Most participants felt comfortable during sessions (74%), found it helpful to learn mind-body exercises (74%), and that the intervention helped in coping with stress (71%). Though participants were satisfied with the opportunity to meet peers, they desired more social connection.

Adolescent and young adult (AYA) siblings of individuals with autism experience unique challenges that can promote both growth and emotional maladjustment. This study explored sibling and parent reports of siblings' lived experiences and identified learning, stressors, and concerns from those experiences. 20 neurotypical (NT) AYA siblings (ages 13-24), and 21 parents were interviewed. Themes that emerged from the data analysis included: (1) learning, empathy, and compassion (2) relationship between the degree of functional impairment and the nature of the sibling relationship; (3) reluctance to share information about siblings with peers; (4) hypervigilance associated with unpredictable behavior; (5) worries and concerns about the future. These findings contribute to the existing literature on the impact and nature of neurotypical siblings' lived experience.

ContextHealth systems have aspired to integrate palliative care (PC) into the emergency department (ED) to improve care quality for over a decade, yet there are very few examples of implemented models in the literature. The coronavirus disease 2019 (COVID-19) pandemic led to an increase in the volume of seriously ill patients in EDs and a consequent rapid increase in PC integration in many EDs.ObjectivesTo describe the new PC-ED delivery innovations that emerged during the COVID-19 pandemic.MethodsFor this qualitative study of PC programs in EDs, semistructured interviews were conducted with ED and PC clinicians between June 30, 2020 and August 18, 2020. Participants were asked about PC-ED integration before, during, and after COVID. We conducted a two-phased rapid analysis using a rapid analysis template and consolidated matrix to identify innovations.ResultsUsing purposive and snowball sampling, we interviewed 31 participants, representing 52 hospitals. Several new innovations in care delivery were identified. These included elements of fully embedded PC, the use of PC extenders, technology both within the electronic medical record and outside it, and innovations in training emergency clinicians in primary PC skills to support care delivery. Most PC efforts focused on increasing goals-of-care conversations. Institutions that implemented these programs reported that they increased PC utilization in the ED, were well received by clinicians, and changed patient's care trajectories.ConclusionSeveral new innovations in PC-ED care delivery emerged during COVID. Many innovations leveraged different types of clinicians to deliver care, an increased physical presence of PC in the ED, and used technology to enhance care delivery. These innovations may serve as a framework for institutions as they plan for evolving needs in the ED during and after COVID. Additional research is needed to evaluate the impact of these programs and understand their applicability beyond the pandemic.

Teenage siblings of children with autism spectrum disorder (ASD) are at risk of worse mental health outcomes than their peers, yet there have been few interventions focused on improving their psychosocial wellbeing. This study explored the acceptability of an 8-session virtual group mind-body resiliency intervention for teen siblings of children with ASD. We used mixed methods to assess quantitative and qualitative survey results. Participants reported that the intervention had the right amount of sessions (88%), structure (74%), and duration (89%). Most participants felt comfortable during sessions (74%), found it helpful to learn mind-body exercises (74%), and that the intervention helped in coping with stress (71%). Though participants were satisfied with the opportunity to meet peers, they desired more social connection., Author(s): Lucy Fell [sup.1] , Brett Goshe [sup.2] [sup.3] [sup.4] , Lara Traeger [sup.3] [sup.4] , Giselle Perez [sup.2] [sup.3] [sup.4] , Dorothea Iannuzzi [sup.5] , Elyse Park [sup.2] [sup.3] [...]

ContextAlthough the importance of palliative care (PC) integration in the emergency department (ED) has long been recognized, few formalized programs have been reported, and none have evaluated the experience of ED clinicians with embedded PC.ObjectivesWe evaluate the experience of ED clinicians with embedded PC in the ED during the coronavirus disease pandemic.MethodsED clinicians completed a survey about their perceptions of embedded PC in the ED. We summarized responses to closed-ended items using descriptive statistics and analyzed open-ended items using thematic analysis.ResultsThere were 134 ED clinicians surveyed. About 101 replied (75% response rate). Of those who had interacted with PC, 100% indicated a benefit of having PC involved. These included freeing up ED clinicians for other tasks (89%), helping them feel more supported (84%), changing the patients care trajectory (67%), and contributing to clinician education (57%) and skills (49%). Among barriers related to engaging PC were difficulty locating them (8%) and lack of time to consult because of ED volume (5%). About 98% of respondents felt that having PC in the ED was either valuable or very valuable. Open-ended responses reflected a positive impact on clinician wellness and improvement in access to high-quality goal-concordant care. Clinicians expressed gratitude for having PC in the ED and noted the importance of having readily available and easily accessible PC in the ED.ConclusionED clinicians' perception of embedded PC was overall positive, with an emphasis on the impact related to task management, enrichment of PC skills, providing support for the team, and improved care for ED patients.

Parents of children with Autism experience high levels of stress. Resiliency is the ability to cope and adapt when faced with stressful events. This randomized, waitlist controlled pilot trial examines the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind--body group intervention for parents of children with ASD. The intervention was feasible and acceptable. The immediate treatment group showed no difference in distress and greater improvement in resiliency and stress reactivity/coping relative to the delayed treatment group, (M difference 5.78; p = 0.038 and M difference 7.78; p = 0.001 respectively). Findings showed promising feasibility, acceptability, and preliminary efficacy for parents of children with ASD.

Parents of children with Autism experience high levels of stress. Resiliency is the ability to cope and adapt when faced with stressful events. This randomized, waitlist controlled pilot trial examines the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind-body group intervention for parents of children with ASD. The intervention was feasible and acceptable. The immediate treatment group showed no difference in distress and greater improvement in resiliency and stress reactivity/coping relative to the delayed treatment group, (M difference 5.78; p = .038 and M difference 7.78; p = .001 respectively). Findings showed promising feasibility, acceptability, and preliminary efficacy for parents of children with ASD., Author(s): Karen A. Kuhlthau [sup.2] [sup.3] , Christina M. Luberto [sup.4] , Lara Traeger [sup.4] , Rachel A. Millstein [sup.1] [sup.4] , Giselle K. Perez [sup.1] [sup.4] , Olivia J. [...]

Objectives One in five children have a learning and attentional disability (LAD). Parents of children with LAD are vulnerable to distress, but an evidence-based treatment has not been developed. Methods From June 2016 to November 2017, we conducted a mixed methods study to adapt and assess the virtual delivery of a mind-body group resiliency program, the Stress Management and Resiliency Training-Relaxation Response Resiliency Program (SMART-3RP), to meet the needs of parents of children with LAD; this is an 8-session weekly group intervention. In the first phase, we conducted 4 parent focus group interviews, 2 professional focus group interviews, and 5 professional individual interviews, and 1 pilot group to adapt the SMART-3RP to target the needs of parents of children with LAD. In the second phase, we conducted a pilot wait-list controlled study to assess the feasibility, acceptability, and preliminary efficacy of a videoconferencing delivery of the adapted program. Parents were randomized to an immediate intervention group (IG) or wait-list control group (WC). Surveys were administered at baseline (time 1), end of intervention for the IG or 3 months post-baseline for the WC (time 2), and 3 months post treatment for the IG or end of intervention for the WC (time 3). Results Qualitative findings illustrated high levels of parental stress, with primary stressors including navigating the educational system, interactions with other parents, familial concerns, and financial and professional sacrifices. We adapted the manual to target these stressors and modified session logistics and delivery. Fifty-three parents (mean age = 46.8; 90.6% female) participated nationally in the pilot trial. 62.5% of participants completed [greater than or equal to] 6/8 sessions; 81.8% reported continued daily/weekly relaxation response exercise practice. T1-T2 comparisons found that IG versus WC participants showed significant improvements in distress [VAS], âM = - 1.95; d = .83 and resilience [CES], âM = 6.38; d = .83, as well as stress coping [MOCS-A] âM = 8.69; d = 1.39; depression and anxiety [PHQ-4], âM = - 1.79; d = .71; social support [MOS-SSS], âM = 5.47; d = .71; and empathy [IRI], âM = 3.17; d = .77; improvements were sustained at the 3 month post intervention follow-up. Conclusion Pilot wait-list randomized trial findings showed promising feasibility, acceptability, and preliminary efficacy for the SMART-3RP intervention adapted for parents of children with LAD. This virtually-delivered resiliency intervention improved parents' distress, resiliency, and stress coping, which were sustained. Clinical Trials ID NCT02772432., Author(s): Elyse R. Park [sup.1] [sup.2] [sup.4] , Giselle K. Perez [sup.1] [sup.4] , Rachel A. Millstein [sup.1] [sup.4] , Christina M. Luberto [sup.1] [sup.2] [sup.4] , Lara Traeger [sup.1] [...]