Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.

BACKGROUND: Returning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. OBJECTIVE: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s). METHODS: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes. RESULTS: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. CONCLUSION: Insights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.

Accelerated transcranial magnetic stimulation for psychological distress in advanced cancer: A phase 2a feasibility and preliminary efficacy clinical trial.

BACKGROUND: Psychological and existential suffering affects many people with advanced illness, and current therapeutic options have limited effectiveness. Repetitive transcranial magnetic stimulation (rTMS) is a safe and effective therapy for refractory depression, but no previous study has used rTMS to treat psychological or existential distress in the palliative setting. AIM: To determine whether a 5-day course of "accelerated" rTMS is feasible and can improve psychological and/or existential distress in a palliative care setting. DESIGN: Open-label, single arm, feasibility, and preliminary efficacy study of intermittent theta-burst stimulation to the left dorsolateral prefrontal cortex, 600 pulses/session, 8 sessions/day (once per hour) for 5 days. The outcomes were the rates of recruitment, completion of intervention, and follow-up (Feasibility); and the proportion of participants achieving 50% improvement on the Hamilton Depression Rating Scale (HDRS) or Hospital Anxiety and Depression Scale (HADS) 2 weeks post-treatment (Preliminary Efficacy). SETTING/PARTICIPANTS: Adults admitted to our academic Palliative Care Unit with advanced illness, life expectancy >1 month and psychological distress. RESULTS: Due to COVID-19 pandemic-related interruptions, a total of nine participants were enrolled between August 2021 and April 2023. Two withdrew before starting rTMS, one stopped due to clinical deterioration unrelated to rTMS, and six completed the rTMS treatment. Five of six participants had a >50% improvement in HDRS, HADS-Anxiety, or both between baseline and the 2 week follow up; the sixth died prior to the 2-week follow-up. In this small sample, mean depression scores decreased from baseline to 2 weeks post-treatment (HDRS 18 vs 7, p = 0.03). Side effects of rTMS included transient mild scalp discomfort. CONCLUSIONS: Accelerated rTMS improved symptoms of depression, anxiety, or both in this small feasibility and preliminary efficacy study. A larger, sham-controlled study is warranted to determine whether rTMS could be an effective, acceptable, and scalable treatment in the palliative setting. TRIAL REGISTRATION: NCT04257227.

Building a Medical Undergraduate Palliative Care Curriculum: Lessons Learned.

Previous literature demonstrates that current palliative care training is in need of improvement for medical students in global, European and Canadian contexts. The training of medical undergraduates is key to ensure that the ongoing and increasing need for enhanced access to palliative care across all settings and communities is met. We describe building a comprehensive palliative and end-of-life care curriculum for medical undergraduates at our university. As with recent European and US studies, we found that the process of university curriculum renewal provided a critical opportunity to integrate palliative care content, but needed a local palliative care champion already in place as an energetic and tireless advocate. The development and integration of a substantive bilingual (English and French) palliative and end-of-life care curriculum over the 4-year medical undergraduate program at our university has occurred over the course of 14 years, and required multiple steps and initiatives. Subsequent to the development of the curriculum, there has been a 13-fold increase in students selecting our palliative care clinical rotations. Critical lessons learned speak to the importance of having a team vision, interprofessional collaboration with a focus on vision, plans and implementation, and flexibility to actively respond and further integrate new educational opportunities within the curriculum. Future directions for our palliative care curriculum include shifting to a competency-based training and evaluation paradigm. Our findings and lessons learned may help others who are working to develop a comprehensive undergraduate medical education curriculum.

A mixed-methods pilot study of 'LIFEView' audiovisual technology: Virtual travel to support well-being and quality of life in palliative and end-of-life care patients.

BACKGROUND: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care. AIM: To determine (1) the feasibility of integrating 'LIFEView', a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using 'LIFEView' videos. DESIGN: A mixed-methods pre-post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life. SETTING/PARTICIPANTS: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants. RESULTS: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System-revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using 'LIFEView', perceptions of the technology, reminiscence, 'LIFEView' as an adaptable technology and ongoing or future use. CONCLUSION: A future adequately powered study to investigate the impacts of 'LIFEView' on patient well-being and quality of life appears to be feasible.

Provision of comprehensive, culturally competent palliative care in the Qikiqtaaluk region of Nunavut: Health care providers' perspectives.

OBJECTIVE: To explore health care providers' perceptions of the provision of palliative care in the Qikiqtaaluk (formerly known as Baffin) region of Nunavut. DESIGN: An exploratory, qualitative, cross-sectional design using in-depth, semistructured interviews. SETTING: Qikiqtaaluk region of Nunavut. PARTICIPANTS: Seven physicians and 6 registered nurses who worked in Iqaluit or other northern Inuit communities in the Qikiqtaaluk region of Nunavut. METHODS: Thirteen health care providers participated in in-person or telephone semistructured interviews, which were audiorecorded and transcribed verbatim. MAIN FINDINGS: Interviews with the participating health care providers in the Qikiqtaaluk region of Nunavut revealed 5 complex and interwoven themes that influence the provision of comprehensive, culturally competent palliative care services to Indigenous patients: respecting Inuit culture, end-of-life care planning, and the role of family; recognizing the importance of the northern community (sense of home); being aware of the limited health care resources; recognizing the critical role of medical interpreters; and improving the quality of palliative care programs and resources, as well as health care provider training in palliative care and Inuit end-of-life care. CONCLUSION: Health care providers in the Qikiqtaaluk region of Nunavut have identified several important themes that influence the provision of culturally sensitive and comprehensive palliative care, most notably the need to develop palliative care resources and programs. It is hoped that the results of this study can be used to help guide palliative care strategies including program development and educational initiatives for health care providers. These initiatives can help build community capacity within a currently underserviced population and improve end-of-life care services available to Nunavut patients and their families. Further studies are required to determine the perspectives of medical interpreters, as well as palliative care patients and their families.

A Scoping Review to Map Empirical Evidence Regarding Key Domains and Questions in the Clinical Pathway of Delirium in Palliative Care.

CONTEXT: Based on the clinical care pathway of delirium in palliative care (PC), a published analytic framework (AF) formulated research questions in key domains and recommended a scoping review to identify evidence gaps. OBJECTIVES: To produce a literature map for key domains of the published AF: screening, prognosis and diagnosis, management, and the health-related outcomes. METHODS: A standard scoping review framework was used by an interdisciplinary study team of nurse- and physician-delirium researchers, an information specialist, and review methodologists to conduct the review. Knowledge user engagement provided context in refining 19 AF questions. A peer-reviewed search strategy identified citations in Medline, PsycINFO, Embase, and CINAHL databases between 1980 and 2018. Two reviewers independently screened records for inclusion using explicit study eligibility criteria for the population, design, delirium diagnosis, and investigational intent. RESULTS: Of 104 studies reporting empirical data and meeting eligibility criteria, most were conducted in patients with cancer (73.1%) and in inpatient PC units (52%). The most frequent study design was a one or more group, nonrandomized trial or cohort (67.3%). Evidence gaps were identified: delirium risk prediction; comparative effectiveness and harms of prevention, variability in delirium management across PC settings, advanced directive and substitute decision-maker input, and transition of care location; and estimating delirium reversibility. Future rigorous primary studies are required to address these gaps and preliminary concerns regarding the quality of extant literature. CONCLUSION: Substantial evidence gaps exist, providing opportunities for future research regarding the assessment, prognosis, and management of delirium in PC settings.

How are physicians delivering palliative care? A population-based retrospective cohort study describing the mix of generalist and specialist palliative care models in the last year of life.

BACKGROUND: To enable coordinated palliative care delivery, all clinicians should have basic palliative care skill sets ('generalist palliative care'). Specialists should have skills for managing complex and difficult cases ('specialist palliative care') and co-exist to support generalists through consultation care and transfer of care. Little information exists about the actual mixes of generalist and specialist palliative care. AIM: To describe the models of physician-based palliative care services delivered to patients in the last 12 months of life. DESIGN: This is a population-based retrospective cohort study using linked health care administrative data. SETTING/PARTICIPANTS: Physicians providing palliative care services to a decedent cohort in Ontario, Canada. The decedent cohort consisted of all adults (18+ years) who died in Ontario, Canada between April 2011 and March 2015 ( n = 361,951). RESULTS: We describe four major models of palliative care services: (1) 53.0% of decedents received no physician-based palliative care, (2) 21.2% received only generalist palliative care, (3) 14.7% received consultation palliative care (i.e. care from both specialists and generalists), and (4) 11.1% received only specialist palliative care. Among physicians providing palliative care ( n = 11,006), 95.3% had a generalist palliative care focus and 4.7% a specialist focus; 74.2% were trained as family physicians. CONCLUSION: We examined how often a coordinated palliative care model is delivered to a large decedent cohort and identified that few actually received consultation care. The majority of care, in both the palliative care generalist and specialist models, was delivered by family physicians. Further research should evaluate how different models of care impact patient outcomes and costs.

Using the "Surprise Question" in Nursing Homes: A Prospective Mixed-Methods Study.

BACKGROUND: The "Surprise Question" (SQ) is often used to identify patients who may benefit from a palliative care approach. The time frame of the typical question (a 12-month prognosis) may be unsuitable for identifying residents in nursing homes since it may not be able to differentiate between those who have a more imminent risk of death within a cohort of patients with high care needs. OBJECTIVE: To examine the accuracy and acceptability of 3 versions of the SQ with shortened prognostication time frames (3 months, 6 months, and "the next season") in the nursing home setting. DESIGN: A prospective mixed-methods study. SETTING/PARTICIPANTS: Forty-seven health-care professionals completed the SQ for 313 residents from a nursing home in Ontario, Canada. A chart audit was performed to evaluate the accuracy of their responses. Focus groups and interviews were conducted to examine the participants' perspectives on the utility of the SQ. RESULTS: Of the 301 residents who were included in the analysis, 74 (24.6%) deaths were observed during our follow-up period. The probability of making an accurate prediction was highest when the seasonal SQ was used (66.7%), followed by the 6-month (58.9%) and 3-month (57.1%) versions. Despite its high accuracy, qualitative results suggest the staff felt the seasonal SQ was ambiguous and expressed discomfort with its use. CONCLUSION: The SQ with shortened prognostication periods may be useful in nursing homes and provides a mechanism to facilitate discussions on palliative care. However, a better understanding of palliative care and increasing staff's comfort with prognostication is essential to a palliative care approach.

Aberrant expression, processing and degradation of dystroglycan in squamous cell carcinomas.

The alpha- and beta- dystroglycan (DG) proteins are involved in epithelial cell development, formation of the basement membrane and maintenance of tissue integrity. Recently, specific changes in the expression patterns of DGs have been described in some cancers. We studied the expression and localisation of alpha- and beta-DG using Western blotting, immunohistochemistry and reverse transcriptase-polymerase chain reaction analyses in samples of normal oral mucosa, oral squamous cell carcinoma (SCC) and cancer cell lines. The alpha- and beta-DG were localised in the basal layers of normal oral mucosa.However, beta-DG expression in cancer tissues showed evidence of aberrant expression, processing and degradation. alpha-DG was altered in all oral cancer samples and cell lines, despite the persistent presence of DG mRNA in cancer cells. Using matrix metalloproteinase (MMP) inhibitors, we determined that beta-DG degradation in carcinoma cell lines can be mediated by MMPs but this process is highly variable, even in cells from the same cancer type. Considering the multifaceted role of DG in epithelial development, it appears that the role of DG degradation in cancer growth and spread, although currently poorly understood, may be important.