Many critically ill patients with COVID-19 need specialty level palliative care to manage symptoms, conduct goals of care conversations, and facilitate medical decision making in ethically and emotionally charged situations. During the apex of the COVID-19 crisis in New York, the Adult Palliative Care Service at Columbia University Irving Medical Center (CUIMC)/NewYork-Presbyterian (NYP) received a 7-fold increase in consultation requests. This unprecedented increase in demand outpaced the palliative care team's ability to respond. We describe the rapid development and implementation of a scalable virtual consultation model staffed by out-of-state palliative care specialist volunteers.
This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scotland, and we describe their experience offering pediatric telehospice. CHAS had strategically planned to implement telehospice, but COVID-19 accelerated the process. The organization evaluated its pediatric clinical and wrap-around hospice services and rapidly migrated them to a virtual environment. They creatively added new services to meet the unique needs of the entire family, who were caring for a child at end of life during COVID-19. CHAS's experience highlights the planning and implementing processes of telehospice with key lessons learned, while acknowledging the challenges inherent in using technology to deliver hospice care.
BACKGROUND: Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.
OBJECTIVE: The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.
METHODS: A scoping review was conducted using the methodological framework of Arksey and O'Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.
RESULTS: The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.
CONCLUSIONS: The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.
Outpatient palliative care (PC) improved quality of life and symptoms among patients with Parkinson disease and related disorders in a trial in JAMA Neurology.
The study’s 210 patients and 175 caregivers were randomly assigned to outpatient integrative PC or to standard care. Every 3 months for a year, participants received PC visits either in person or via telemedicine from a neurologist, social worker, chaplain, and nurse with guidance from a palliative medicine specialist. Standard care was provided by a neurologist and a primary care clinician.
Background: Telemedicine has been proposed as a means to improve access to palliative care. There is limited information about how health care workers feel about providing this kind of care and how families feel about receiving it.
Objective: this study assesses provider and caregiver perceptions of the safety and efficacy of the Distance Support Program (DSP) of a home-based palliative care provider in Beirut, Lebanon.
Design: interviews were conducted with 8 physicians and nurses who provided that care through the DSP as well as 49 caregivers of patients who received care between January 2015 and December 2017. Interviews were analyzed thematically.
Results: Although they would have preferred having access to home visits, caregivers reported that they valued the information, guidance, and emotional support they received through the DSP and they appreciated having telephone access to providers. Health providers reported the DSP was more efficient than home visits. They felt it was safest when delivered by an experienced provider, they had access to a reliable caregiver, and the patient was assessed at least once. They felt it was important to communicate clear expectations to patients and caregivers when delivering care by telephone.
Conclusions: Telemedicine can be a useful tool to provide palliative care services in settings where they would otherwise not be available.
Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians.
Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age =65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2.
Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients.
Conclusions: The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.
Within weeks, COVID-19 has transformed our practice of palliative care and clinical medicine as we know it. Telemedicine has emerged as a critical technology to bring medical care to patients while attempting to reduce the transmission of COVID-19 among patients, families, and clinicians. It is also increasingly necessary to preserve scarce resources like personal protective equipment. In this article, we share just-in-time tips to support palliative care clinicians and program leaders in providing the best care possible by telemedicine. These quick, practical tips cover telemedicine setup, patient considerations, and clinician considerations. Next steps include ensuring equitable access to affordable telemedicine technology for vulnerable populations through creative solutions and financing, and dedicated attention to telemedicine evaluation and quality improvement.
Palliative and hospice care services produce immense benefits for patients living with serious illness and for their families. Due to the national shift toward value-based payment models, health systems and payers share a heightened awareness of the need to incorporate palliative and hospice services into their service mix for seriously ill patient populations. During the last decade, a tremendous amount of capital has been invested to better integrate information technology into healthcare. This includes development of technologies to promote utilization of palliative and hospice services. However, no coordinated strategy exists to link such efforts together to create a cohesive strategy that transitions from identification of patients through receipt of services. A Serious Illness Digital Ecosystem (SIDE) is the intentional aggregation of disparate digital and mobile health technologies into a single system that connects all of the actors involved in serious illness patient care. A SIDE leverages deployed health technologies across disease continuums and geographic locations of care to facilitate the flow of information among patients, providers, health systems, and payers. Five pillars constitute a SIDE, and each one is critical to the success of the system. The 5 pillars of a SIDE are: Identification, Education, Engagement, Service Delivery, and Remote Monitoring. As information technology continues to evolve and becomes a part of the care delivery landscape, it is necessary to develop cohesive ecosystems that inform all parts of the serious illness patient experience and identifies patients for the right services, at the right time.
Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life.
Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks.
Design, Setting, and Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018.
Intervention: Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention.
Main Outcomes and Measures: The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving.
Results: A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient’s spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d = -0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0).
Conclusions and Relevance: This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes.
As coronavirus disease 2019 cases increase throughout the country and health care systems grapple with the need to decrease provider exposure and minimize personal protective equipment use while maintaining high-quality patient care, our specialty is called on to consider new methods of delivering inpatient palliative care (PC). Telepalliative medicine has been used to great effect in outpatient and home-based PC but has had fewer applications in the inpatient setting. As we plan for decreased provider availability because of quarantine and redeployment and seek to reach increasingly isolated hospitalized patients in the face of coronavirus disease 2019, the need for telepalliative medicine in the inpatient setting is now clear. We describe our rapid and ongoing implementation of telepalliative medicine consultation for our inpatient PC teams and discuss lessons learned and recommendations for programs considering similar care models.
BACKGROUND: Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions.
OBJECTIVE: This study aimed to identify and review the use of eHealth to communicate and support home-based pediatric palliative care and appraise the methodological quality of the published research.
METHODS: We conducted a convergent, systematic mixed methods review and searched Medical Literature Analysis and Retrieval System Online (Medline), EMBASE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus for eligible papers. Studies evaluating 2-way communication technology for palliative care for children aged = 18 years and applying quantitative, qualitative, or mixed methods from 2012 to 2018 were eligible for inclusion. Quantitative and qualitative studies were equally valued during the search, screening, extraction, and analysis. Quantitative data were transformed into qualitative data and analyzed using a thematic analysis. Overall, 2 independent researchers methodologically appraised all included studies.
RESULTS: We identified 1277 citations. Only 7 papers were eligible for review. Evaluating eHealth interventions in pediatric palliative care poses specific methodological and ethical challenges. eHealth to facilitate remote pediatric palliative care was acknowledged both as an intrusion and as a support at home. Reluctance toward eHealth was mainly identified among professionals.
CONCLUSIONS: The strengths of the conclusions are limited by the studies' methodological challenges. Despite the limitless possibilities held by new technologies, research on eHealth in home-based pediatric palliative care is scarce. The affected children and families appeared to hold positive attitudes toward eHealth, although their views were less apparent compared with those of the professionals.
TRIAL REGISTRATION: PROSPERO CRD42018119051; https://tinyurl.com/rtsw5ky.
OBJECTIVE: To evaluate 'Gold Line', a 24/7, nurse-led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven.
METHOD: Data on the time and nature of all calls between 1 April 2014 and 30 March 2015 were obtained from the patient Electronic Records. Interviews with 13 participants captured patients and carers perspectives.
RESULTS: To date, 3291 patients have been referred to the Gold Line. During the study period, 42% of registered patients had a non-cancer diagnosis and 45.2% of service users were not known to Specialist Palliative Care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were made involving 1813 individuals. 39% of the 5106 contacts were resolved by the Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance from the Gold Line and the importance of practical advice was emphasised. Current data (year to October 2015) show that 98.5% of calls (4500/4568) resulted in patients remaining in their place of residence.
CONCLUSIONS: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and for their carers. The line enabled them to feel supported and remain in their place of residence, hence reducing the pressure for avoidable hospital admissions and use of other services. Providing this service may encourage healthcare professionals to identify more patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services.
OBJECTIVE: Palliative care plays an essential role in enhancing the quality of life and quality of death for residents in long-term care homes (LTCHs). Access to palliative care specialists is one barrier to providing palliative care to LTCHs. This project focused on palliative telemedicine, specifically evaluating whether integration of early palliative care specialist consultation into an LTCH would be feasible through the implementation of videoconferencing during routine interdisciplinary care conferences.
METHOD: This was a mixed-methods evaluation of a pilot program implementation over 6 months, to integrate early palliative care into an LTCH. There were two pilot communities with a total of 61 residents. Resident demographics were collected by a chart review, and palliative telemedicine feasibility was evaluated using staff and family member surveys.
RESULTS: For the 61 residents, the average age of the residents was 87 years, with 61% being female and 69% having dementia as the primary diagnosis. The mean CHESS (Change in Health, End-Stage Disease, Signs, and Symptoms) and ADL (Activities of Daily Living) scores were 0.8 and 4.0, respectively, with 54% having a Palliative Performance Scale score of 40. Seventeen clinical staff surveys on palliative teleconferences were completed with the majority rating their experience as high. Ten out of the 20 family members completed the palliative teleconference surveys, and the majority were generally satisfied with the experience and were willing to use it again. Clinical staff confidence in delivering palliative care through telemedicine significantly increased (P = 0.0021).
SIGNIFICANCE OF RESULTS: The results support the feasibility of videoconferencing as a means of palliative care provision. Despite technical issues, most clinical staff and families were satisfied with the videoconference and were willing to use it again. Early integration of palliative care specialist services into an LTCH through videoconferencing also led to improved self-rated confidence in the palliative approach to care by clinical staff.
Objectives: To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications.
Data Sources: Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer.
Conclusion: The evidence base is growing; however, more studies are needed to test the effectiveness of technology.
Implications for Nursing Practice: Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.
BACKGROUND: Mobile health (mHealth) provides a unique modality for improving access to and awareness of palliative care among patients, families, and caregivers from diverse backgrounds. Some mHealth palliative care apps exist, both commercially available and established by academic researchers. However, the elements of family support and family caregiving tools offered by these early apps is unknown.
OBJECTIVE: The objective of this scoping review was to use social convoy theory to describe the inclusion and functionality of family, social relationships, and caregivers in palliative care mobile apps.
METHODS: Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines, a systematic search of palliative care mHealth included (1) research-based mobile apps identified from academic searches published between January 1, 2010, and March 31, 2019 and (2) commercially available apps for app stores in April 2019. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria. Abstracted data covered app name, research team or developer, palliative care element, target audience, and features for family support and caregiving functionality as defined by social convoy theory.
RESULTS: Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified. Commercially available apps were most commonly designed for both patients and social convoys, whereas the majority of research apps were designed for patient use only.
CONCLUSIONS: Results suggest there is an emerging presence of apps for patients and social convoys receiving palliative care; however, there are many needs for developers and researchers to address in the future. Although palliative care mHealth is a growing field, additional research is needed for apps that embrace a team approach to information sharing, target family- and caregiver-specific issues, promote access to palliative care, and are comprehensive of palliative needs.
The purpose of this review is to describe the role that telehealth has in the delivery of palliative care to people with Parkinson's disease and related disorders (PDRDs), particularly as their disease advances, and they become homebound. A review of the Cochrane database, PubMed, and the American Academy of Neurology (AAN) guidelines was conducted to identify peer-reviewed publications on this topic. Telehealth has been found to increase access to neurological specialty care for people with PDRDs who live in more under-resourced areas or are homebound due to their advancing neurodegenerative disease. Given the benefits of palliative care for people with PDRDs and their caregivers, increasing access via telehealth to palliative care through research, education and policy efforts has the potential to significantly improve the landscape of care for those with PDRDs.
Background: Unplanned readmissions or emergency visits (EVs) after discharge from hospital are frequent in patients in palliative care. Strategies to anticipate and prevent rapid deterioration of health are needed.
Objective: Assessing feasibility and predictive ability of remote monitoring using wearables.
Design: Prospective observational feasibility study in a single center.
Setting/Subjects: Thirty cancer patients with an estimated life expectancy of >8 weeks to <12 months, aged >18 years and being discharged from inpatient to outpatient care were included.
Measurements: Patients were provided with a smartphone, including the preinstalled "Activity Monitoring" application and a sensor-equipped bracelet. Follow-up was 12 weeks. Both devices recorded several features (e.g., vital signs). Visual analog scale (VAS) for pain and distress was reported once daily and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) once weekly. Statistical methods were applied to explore relationship between sensor data, self-reports, and EVs or readmissions or death.
Results: Between February 2017 and May 2018, 30 patients were included. Twenty-five of 30 participants (83%) completed 12 weeks of follow-up. On average, bracelet was worn on 53% and smartphone on 85% of study days. Completion rate of daily digital questionnaires for subjective ratings was 73%. Eight unplanned hospital readmissions occurred. Ratings of pain, distress, and QLQ-C30 scores were not associated with readmission, whereas resting heart rate, resting heart rate variability, as well as speed of steps differed significantly in patients with and without readmission.
Conclusions: Monitoring of palliative cancer patients using wearables is feasible. First results indicate that mobile health features might be promising biomarkers to predict unplanned readmissions.
BACKGROUND: Telehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidence-based research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access.
METHODS: Systematic review of the literature with thematic synthesis. Records were screened and data extracted by two reviewers. EMBASE, MEDLINE, CINAHL, Psychinfo and Cochrane central register for controlled trials were searched using pre-defined terms. Hand searching of conference literature, thesis databases and citation tracking was also conducted. The protocol for this systematic review was registered with PROSPERO and can be found at http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42017080038.
RESULTS: The search identified 3807 titles and 30 studies were included in the review. Telehealth was used to support patients and carers, electronic record keeping and professional education. Notably, the number of home telemonitoring initiatives for patients had increased from the 2010 review. Despite this variety, many studies were small scale, descriptive and provided little evidence of evaluation of the service. Ten papers were sufficiently detailed to allow appraisal against the digital service standard and only one of these met all of the criteria to some extent. Seven studies made reference to emergency care access.
CONCLUSIONS: Although there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards.
Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers.
Objective: Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings.
Design: Case series.
Setting: Home hospice in rural Midwest.
articipants: Patients <18 years of age enrolling in home hospice for end-of-life care.
Measurements: The acceptability of telehealth inclusion of a hospital-based pediatric palliative care provider in home hospice visits to the family caregiver and home hospice nurse was measured using the Technology Acceptance Model Questionnaires with the inclusion of the child perspective when possible.
Results: Fifteen patients mean age of seven years enrolled. Family caregiver included 11 mothers (73%), 2 grandmothers (13%), and 2 fathers (13%). Fifteen nurses from nine hospice agencies participated. Twelve families (80%) included additional relatives by telehealth modality. Home distance averaged 172 miles with mean eight hours saved by accessing telehealth encounter. Visit content was primarily caregiver support, quality of life, goals of care, symptom management, and medication review. Telehealth acceptability improved between time points and was higher in family caregivers (4.3–4.9 on 5-point scale; p = 0.001) than hospice nurses (3.2–3.8 on 5-point scale; p = 0.05). All children able to self-report stated a “like” for telehealth, citing six reasons such as “being remembered” and “medical knowledge and care planning.”
Conclusions: Pediatric palliative telehealth visits partnered with in-person hospice nurse offer acceptable access to services, while extending support.
CONTEXT: Unrelieved cancer pain at the end of life interferes with achieving patient-centered goals.
OBJECTIVE: To compare effects of usual hospice care and PAINRelieveIt® on pain outcomes in patients and their lay caregivers.
METHODS: In a 5-step, stepped wedge randomized, controlled study, 234 patients (49% male, 18% Hispanic, 51% racial minorities) and 231 lay caregivers (26% male, 20% Hispanic, 54% racial minorities) completed pre/post pain measures. They received usual hospice care with intervention components that included a summary of the patient's pain data, decision support for hospice nurses, and multimedia education tailored to the patient's and lay caregiver's misconceptions about pain.
RESULTS: The intervention effect on analgesic adherence (primary outcome) was not significant. Posttest worst pain intensity was significantly higher for the experimental group, but the difference (0.70; CI=[0.12, 1.27]) was not clinically meaningful. There was nearly universal availability of prescriptions for strong opioids and adjuvant analgesics for neuropathic pain in both groups. Lay caregivers' pain misconceptions (0-5 scale) were significantly lower in the experimental group compared to the usual care group (mean difference controlling for baseline is 0.38; CI=[0.08, 0.67]; p=.01).
CONCLUSION: This RCT was a negative trial for the primary study outcomes, but positive for a secondary outcome. The trial is important for clearly demonstrating the feasibility of implementing the innovative set of interventions.