ABSTRACT
Background/Purpose: Adolescents and Young Adults (AYA) with cancer represent a small but increasing number of the overall cancer population in the US, representing about 5% of those diagnosed. Given the impact of treatment on quality of life, especially fertility, programmatic efforts to educate patients on ways to mitigate these effects are paramount. However, reaching this population in a large academic medical center can be elusive given the diversity of cancers diagnosed within this population and the many competing personal and developmental demands patients face. The recent COVID-19 pandemic also challenges efforts to build a cohesive AYA program. Method(s): We present efforts to host an annual in-person patientcentric summit for 60 AYA patients and 60 caregivers in the year 2022. The summit included a community partner fair. Agenda design was based upon patient feedback from an online summit in 2021 requesting more direct engagement and topics specifically focused on coping with side effects from treatment. Recruitment efforts included targeted social media marketing, phone campaigning and direct contact at patient medical appointments. Agenda topics focused on exercise, nutrition, onco-fertility, caregiver burnout, and rebuilding social connections. An incentivized exit survey was provided for feedback on the current summit and topic ideas for future programming. Result(s): Over 250 patients were contacted directly via phone or in person. Patients and caregivers registered for all 120 slots prior to the summit. A total of 75 (49 patients and 26 caregivers) participated in the summit. There were 10 local and national community partners at the fair. Fifty-seven exit surveys were completed with 86%-95% of respondents indicating they learned a good amount or a great deal from the presentations. Conclusions and Implications: Recruitment of AYAs for educational events requires significant front-end effort. However, patients appreciate the information provided and program leadership gain invaluable information about the current needs of AYA patients.
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Background: The aim of the present study was to examine cognitive-behavioral changes that may be related to the lockdown and the quarantine during the COVID-19 pandemic in Serbian patients with mild cognitive impairment (MCI), and Alzheimer dementia (AD). The caregivers' distress was also evaluated. Method(s): The 2089 registered patients with cognitive deficits, between December 2018 until January 2020 in Belgrade Memory clinic registry, University Clinical Center was contacted by telephone within the survey, 2 months after the lockdown declaration. Either the patients or their caregivers were asked to answer on: Caregiver Questionnaire, the Kingston Caregiver Stress Scale, Patient Questionnaire, Neuropsychiatric Questionnaire, and Clinical Dementia rating scale for caregiver and patients. Result(s): The study included 1002 (females 56.%) patients either with AD (n = 389) or MCI (n = 604) who have got completed data set for analyses. Unfortunately, 74 patients died in the pandemic time, and 225 subjects rejected to participate, and the rest were not reached due to wrong phone number, or missed contact record. Caregivers reported a worsening in cognitive functions in 55.1% of AD patients, and increased neuropsychiatric symptoms were reported in 59.8% as worsening of preexisting symptoms (41.9%) or as new onset (21%). The most common were depression, apathy, sleep disorders and anxiety. The prevalence of these symptoms was the same as before the pandemic, but there was a change in their frequency and intensity. Approximately 15.9% of patients with MCI showed the onset of new behavioral symptoms, sleep disorder and anxiety were the predominant new symptoms. The transition from MCI to dementia was recorded in 24%. Due to increased patients' neuropsychiatric burden stress-related symptoms were experienced by two-thirds of caregivers. Conclusion(s): Pandemic quarantine induces a significant increase of neuropsychiatric symptoms in approximately half of patients and stress-related symptoms in two-thirds of caregivers. Health services need to plan a post-pandemic strategy in order to address these emerging needs. Copyright © 2022 the Alzheimer's Association.
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Background Nottinghamshire Hospice's day therapy unit closed its doors to patients during the COVID-19 pandemic. Government advice was supporting discharge from hospital wherever possible (NHS England and NHS Improvement, 2020). When asked, more than four in five people say they would prefer to die at home (Hoare, Morris, Kelly, et al., 2015). Patients receiving care from specialist palliative care teams tend to do better than those without (Higginson & Evans, 2010). Aims To expedite the discharge of patients at end-of-life from hospital and prevent unnecessary hospital admission for those in the community so that more people achieve their preferred place of death (PPD) with the provision of a dedicated palliative care service. Methods March-May 2020: consultations with fast track continuing care (FTCC), model planning, internal consultation, workforce transformation. May-July 2020: recruitment, service launch. July-March 2021: continuous service provision. We worked closely alongside FTCC to support patients either in hospital that wished to come home but needed a package of care or, patients that were deteriorating at home and required end-of-life care. An initial assessment by a registered nurse from the Hospice Outreach Discharge Support (HODS) team meant more timely referral into extended palliative community services including provision of specialist equipment and access to other hospice services e.g. bereavement support. It also focuses on the completion of EPaCCS and ReSPECT forms identifying PPD. Results Number of patients treated by HODS May 20 - March 21 = 195. 64% (124) died at home. 23% (44) remained well enough to be discharged to domiciliary care agency. 10% (20) admitted to hospital. 3% (6) admitted to nursing home. Average length of stay on HODS = 10 days PPD achieved = 95.87% [4] Conclusion The creation of HODS allows more people at end-of-life to remain in their PPD and with greater access to support services preventing carer burnout and unnecessary admission to hospital.
ABSTRACT
Background/aims: At the Odette Cancer Centre in Toronto, Canada, almost 1 in 5 ambulatory palliative oncology patients presents to our local Emergency Department (ED) every month. Of these visits, approximately 50% are potentially avoidable as they result in a direct discharge home, or in an acute care admission of < 48 hours. For a palliative cancer patient, ED visits are frustrating, costly and are considered an indicator of poor-quality end-of-life care. To improve end-of-life care for this vulnerable population, reducing ED visits is imperative. Methods: We conducted an interrupted time series following the Model for Improvement with an aim to reduce the monthly ED visit rate for the patients of our oncology palliative care clinic by 20% over 1 year. A patient-informed root cause analysis was performed to guide the implementation of a bundle of three change concepts: (1) improving patients' after-hours access to hospital and home care (2) increasing video virtual visits;and (3) enabling early identification of caregiver burnout. Results: Monthly ED visit rates declined by 24% (p < 0.001) with evidence of sustained improvement. The percentage of ED visits that resulted in a hospital admission of < 48 hours remained unchanged. Fidelity was attained by the interventions associated with the first change concept. Conclusions: Improving patients' after-hours access to hospital and home care was associated with a clinically and statistically significant reduction in ED visits. This is the first study in the palliative oncology population to implement patient-informed interventions to reduce ED use. The study occurred during the COVID-19 pandemic which constitutes a significant confounding factor. Continued evaluation post-pandemic will serve to better understand ongoing trends in ED use.
ABSTRACT
In March of 2020 the president of the United States declared a national emergency as COVID-19 transmitted across the globe. Over 18 months later , the pandemic continues to pose challenges as residents of the world adapt to the ever-changing shuffle of precautions, regulations, and restrictions. During this unprecedented time we have globally learned to expect the unexpected;which has become the norm. Caregivers of Children with Complex and Chronic Conditions wear multiple hats when taking care of their children. They may serve as a nurse, therapist, educational advocate, chauffeur, or personal assistant. Due to the ever changing routines and mandates as a result of the pandemic, parents have become worn down leading to mental health concerns and caregiver burnout. During the pandemic caused by COVID-19, caregivers of children with unique needs are faced with a new set of challenges
ABSTRACT
BACKGROUND: The COVID-19 pandemic is impacting the physical and emotional health of older adults living with dementia and their care partners. OBJECTIVE: Using a patient-centered approach, we explored the experiences and needs of people living with dementia and their care partners during the COVID-19 pandemic as part of an ongoing evaluation of dementia support services in British Columbia, Canada. METHODS: A survey instrument was developed around the priorities identified in the context of the COVID-19 and Dementia Task Force convened by the Alzheimer Society of Canada. RESULTS: A total of 417 surveys were analyzed. Overall, respondents were able to access information that was helpful for maintaining their own health and managing a period of social distancing. Care partners reported a number of serious concerns, including the inability to visit the person that they care for in long-term or palliative care. Participants also reported that the pandemic increased their levels of stress overall and that they felt lonelier and more isolated than they did before the pandemic. The use of technology was reported as a way to connect socially with their loved ones, with the majority of participants connecting with others at least twice per week. CONCLUSION: Looking at the complex effects of a global pandemic through the experiences of people living with dementia and their care partners is vital to inform healthcare priorities to restore their quality of life and health and better prepare for the future.