Self-managing symptoms of Long COVID: an education and strategies research protocol.

Post-acute sequelae of SARS-COV-2 (PASC) is growing in prevalence, and involves symptoms originating from the central neurological, cardiovascular, respiratory, gastrointestinal, autonomic nervous, or immune systems. There are non-specific symptoms such as fatigue, headaches, and brain fog, which cannot be ascribed to a single system. PASC places a notable strain on our healthcare system, which is already laden with a large number of acute-COVID-19 patients. Furthermore, it impedes social, academic and vocational functioning, and impacts family life, relationships, and work/financial life. The treatment for PASC needs to target this non-specific etiology and wide-ranging sequelae. In conditions similar to PASC, such as "chemo brain," and prolonged symptoms of concussion, the non-specific symptoms have shown to be effectively managed through education and strategies for self-management and Mindfulness interventions. However, such interventions have yet to be empirically evaluated in PASC to our knowledge. In response to this gap, we have developed a virtual education intervention synthesized by psychiatrists and clinical psychologists for the current study. We will undertake a two-phase randomized controlled trial to determine the feasibility (Phase 1; N = 90) and efficacy (Phase 2; sample sized based on phase 1 results) of the novel 8 week Education and Self-Management Strategies group compared to a mindfulness skills program, both delivered virtually. Main outcomes include confidence/ability to self-manage symptoms, quality of life, and healthcare utilization. This study stands to mitigate the deleterious intrusiveness of symptoms on everyday life in patients with PASC, and may also help to reduce the impact of PASC on the healthcare system. Clinical trial registration:https://classic.clinicaltrials.gov/ct2/show/NCT05268523; identifier NCT05268523.

Outcomes of re-referrals of patients with alcohol-associated liver disease, who were previously declined for liver transplantation.

Since 2018, our program has utilized specific psychosocial criteria and a multidisciplinary approach to assess patients for liver transplant due to alcohol-associated liver disease (ALD), rather than the 6-month abstinence rule alone. If declined based on these criteria, specific recommendations are provided to patients and their providers regarding goals for re-referral to increase the potential for future transplant candidacy. Recommendations include engagement in treatment for alcohol use disorder, serial negative biomarker testing, and maintenance of abstinence from alcohol. In our current study, we evaluate the outcomes of patients with ALD, who were initially declined upon assessment and re-referred to our program. This is a retrospective cohort study that includes 98 patients with ALD, who were previously declined for liver transplantation and were subsequently re-referred for liver transplant assessment between May 1, 2018, and December 31, 2021. We assess the outcomes of patients who were re-referred including acceptance for transplantation following a second assessment. Of the 98 patients who were re-referred, 46 (46.9%) fulfilled the recommendations made and proceeded to further medical evaluation. Nine were eventually transplanted; others are listed and are waiting for transplant. The presence of a partner was independently associated with a higher rate of acceptance (OR 0.16, 95% CI: 0.03-0.97, p = 0.05). Most of the patients who did not proceed further (n = 52) were declined again due to ALD contraindications (n = 33, 63.4%), including ongoing drinking and lack of engagement in recommended addiction treatment. Others had medical contraindications (11.2%), clinically improved (6.1%), had adherence issues (5.1%), or lack of adequate support (2%). Patients with ALD previously declined for a liver transplant can be re-referred and successfully accepted for transplantation by fulfilling the recommendations made by the multidisciplinary team. Important factors including ongoing abstinence, engagement in addiction treatment, and social support are key for successful acceptance.

Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis.

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling long-term condition of unknown cause. The National Institute for Health and Care Excellence (NICE) published a guideline in 2021 that highlighted the seriousness of the condition, but also recommended that graded exercise therapy (GET) should not be used and cognitive-behavioural therapy should only be used to manage symptoms and reduce distress, not to aid recovery. This U-turn in recommendations from the previous 2007 guideline is controversial.We suggest that the controversy stems from anomalies in both processing and interpretation of the evidence by the NICE committee. The committee: (1) created a new definition of CFS/ME, which 'downgraded' the certainty of trial evidence; (2) omitted data from standard trial end points used to assess efficacy; (3) discounted trial data when assessing treatment harm in favour of lower quality surveys and qualitative studies; (4) minimised the importance of fatigue as an outcome; (5) did not use accepted practices to synthesise trial evidence adequately using GRADE (Grading of Recommendations, Assessment, Development and Evaluations trial evidence); (6) interpreted GET as mandating fixed increments of change when trials defined it as collaborative, negotiated and symptom dependent; (7) deviated from NICE recommendations of rehabilitation for related conditions, such as chronic primary pain and (8) recommended an energy management approach in the absence of supportive research evidence.We conclude that the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.

Gift Discourse in Transplant and Its Implications in Anonymous Living Liver Donation.

The Gift of Life metaphor is prevalent in pro-donation dialogue, aiming to promote transplant programs and conceptualize the act of organ donation. To obtain a better understanding of living donor perceptions on the term Gift of Life, we analyzed thematic views presented by anonymous living donors (ALLDs). Twenty-six ALLDs completed a semi-structured qualitative interview consisting of questions regarding their motivations, experiences, and perceptions on donation. The following 5 major themes relating to the Gift of Life terminology were elucidated: (1) Complete agreement with the term and its relevance to donation. (2) Their donation did not represent a Gift of Life. (3) The term was too grandiose. (4)A belief that the term has more meaning for the recipient rather than donor. (5 )That the "gift" goes both ways, with the donor also benefiting from the experience.

"Don't Just Study our Distress, Do Something": Implementing and Evaluating a Modified Stepped-Care Model for Health Care Worker Mental Health During the COVID-19 Pandemic.

OBJECTIVE: Throughout the COVID-19 pandemic, there have been concerns about the mental health of health care workers (HCW). Although numerous studies have investigated the level of distress among HCW, few studies have explored programs to improve their mental well-being. In this paper, we describe the implementation and evaluation of a program to support the mental health of HCW at University Health Network (UHN), Canada's largest healthcare network. METHODS: Using a quality improvement approach, we conducted a needs assessment and then created and evaluated a modified stepped-care model to address HCW mental health during the pandemic. This included: online resources focused on psychoeducation and self-management, access to online support and psychotherapeutic groups, and self-referral for individual care from a psychologist or psychiatrist. We used ongoing mixed-methods evaluation, combining quantitative and qualitative analysis, to improve program quality. RESULTS: The program is ongoing, running continuously throughout the pandemic. We present data up to November 30, 2021. There were over 12,000 hits to the UHN's COVID mental health intranet web page, which included self-management resources and information on group support. One hundred and sixty-six people self-referred for individual psychological or psychiatric care. The mean wait time from referral to initial appointment was 5.4 days, with an average of seven appointments for each service user. The majority had moderate to severe symptoms of depression and anxiety at referral, with over 20% expressing thoughts of self-harm or suicide. Post-care user feedback, collected through self-report surveys and semistructured interviews, indicated that the program is effective and valued. CONCLUSIONS: Development of a high-quality internal mental health support for HCW program is feasible, effective, and highly valued. By using early and frequent feedback from multiple perspectives and stakeholders to address demand and implement changes responsively, the program was adjusted to meet HCW mental health needs as the pandemic evolved.

Future public health emergencies and disasters: sustainability and insights into support programs for healthcare providers.

BACKGROUND: The mental health of healthcare workers (HCWs) has been at the forefront throughout the COVID-19 pandemic. While workplace-based support programs have been developed in hospitals globally, few systematically collected data. While critical to their success, information on these programs and the experience of mental healthcare providers (MHP) who support colleagues is limited. The objective of this study was to explore the experiences of MHP caring for HCW colleagues within a novel workplace-based mental health support program during the COVID-19 pandemic, to provide insights on facilitators, areas for improvement and barriers to program sustainability. METHODS: This qualitative study used semi-structured interviews conducted by videoconference between September 2020 to October 2021. UHN CARES (University Health Network Coping and Resilience for Employees and Staff) Program was developed during the first wave of the COVID-19 pandemic in March 2020. It supports over 21,000 staff members within the UHN, Canada's largest academic health research institution, in Toronto, Canada. Purposive sampling was used to select 10 of the 22 MHP in the UHN CARES Program (n = 10). Using a critical realism framework, key components required to sustain a successful workplace-based mental health support program for HCWs and balance the needs of MHP were determined. RESULTS: Six psychiatrists and four psychologists (n = 10) with varying roles at UHN participated in 17 interviews, including seven repeat interviews exploring changes over time within the pandemic and program. Components which facilitated the success of the program included flexibility in scheduling, confidential health record storage, comprehensive administrative support, availability of resources and adaptive quality improvement approach. Recommendations for improvement included opportunities for peer supervision, triaging of cases, and managing HCW expectations. MHP found caring for HCWs to be meaningful and they utilized existing clinical skills during sessions. Challenges included working in a virtual setting, navigating boundaries when caring for colleagues, and managing the range of service users and their needs. CONCLUSIONS: These findings suggest how support programs can be structured for HCWs, how to provide support, and how to sustain this support, allowing health systems to balance the needs of HCWs and MHPs in preparation for future public health emergencies.

Shared sources and mechanisms of healthcare worker distress in COVID-19: a comparative qualitative study in Canada and the UK.

Background: COVID-19 has had a significant impact on the wellbeing of healthcare workers, with quantitative studies identifying increased stress, anxiety, depression, insomnia, and PTSD in a wide range of settings. Limited qualitative data so far has offered in-depth details concerning what underlies these challenges, but none provide comprehensive comparison across different healthcare systems. Objective: To explore qualitative findings relating to healthcare worker distress from two different countries to understand the nuanced similarities and differences with respect to the sources and impact of distress relating to COVID-19. Method: A comparative interpretive thematic analysis was carried out between two qualitative data sets examining healthcare workers' experiences of distress during the COVID-19 pandemic. Data from Canada and the UK were collected in parallel and analyzed in an iterative, collaborative process. Results: A number of sources of distress cut across both study settings including concerns about safety and patient care, challenges at home or in one's personal life, communication issues, work environment, media and public perception, and government responses to the pandemic. These sit on a spectrum from individual to institutional sources and were mutually reinforcing. Our analysis also suggested that common mechanisms such as exacerbations in uncertainty, hypervigilance, and moral injury underpinned these sources, which contributed to how they were experienced as distressing. Conclusion: This is the first international collaboration utilising qualitative data to examine this pressing issue. Despite differences in the political, social, health service, and pandemic-related context, the sources and mechanisms of distress experienced by healthcare workers in Canada and the UK were remarkably similar. HIGHLIGHTS This international comparative qualitative study explores how mechanisms that lead to distress are shared across different geographies and cultures, even as the local context shapes the sources of distress themselves.

Antecedentes: La COVID-19 ha tenido un impacto significativo en el bienestar de los trabajadores de la salud, con estudios cuantitativos que identifican un aumento del estrés, la ansiedad, la depresión, el insomnio, y el TEPT en una amplia variedad de entornos. Hasta ahora, los datos cualitativos son limitados y han ofrecido un profundo detalle sobre lo que subyace a estos desafíos, pero ninguno proporciona una comparación exhaustiva entre los diferentes sistemas de atención de salud.Objetivo: Explorar los hallazgos cualitativos relacionados con la angustia de los trabajadores de la salud de dos países diferentes para comprender las sutiles similitudes y diferencias con respecto a las fuentes y el impacto de la angustia relacionada con la COVID-19.Método: Se llevó a cabo un análisis temático interpretativo comparativo entre dos conjuntos de datos cualitativos que examinaron las experiencias de angustia de los trabajadores de la salud durante la pandemia de la COVID-19. Los datos de Canadá y el Reino Unido se recopilaron en paralelo y se analizaron en un proceso colaborativo iterativo.Resultados: Una serie de fuentes de angustia atraviesan ambos entornos de estudio, incluidas las preocupaciones sobre la seguridad y el cuidado del paciente, los desafíos en el hogar o en la vida personal, los problemas de comunicación, el entorno laboral, la percepción pública y de los medios de comunicación, y las respuestas gubernamentales a la pandemia. Estos se ubican en un espectro desde fuentes individuales hasta institucionales y se reforzaron mutuamente. Nuestro análisis también sugirió que mecanismos comunes como las exacerbaciones de la incertidumbre, la hipervigilancia, y el daño moral sustentaban estas fuentes, lo que contribuyó a que se experimentaran como angustiosas.Conclusión: Esta es la primera colaboración internacional que utiliza datos cualitativos para examinar este apremiante problema. A pesar de las diferencias en el contexto político, social, de servicios de salud y relacionado con la pandemia, las fuentes y los mecanismos de angustia experimentados por los trabajadores de la salud en Canadá y el Reino Unido fueron notablemente similares.

Initial findings on RESTORE for healthcare workers: an internet-delivered intervention for COVID-19-related mental health symptoms.

Many healthcare workers on the frontlines of the COVID-19 pandemic are experiencing clinical levels of mental health symptoms. Evidence-based interventions to address these symptoms are urgently needed. RESTORE (Recovering from Extreme Stressors Through Online Resources and E-health) is an online guided transdiagnostic intervention including cognitive-behavioral interventions. It was specifically designed to improve symptoms of anxiety, depression, and posttraumatic stress disorder (PTSD) associated with COVID-19-related traumatic and extreme stressors. The aims of the present study were to assess the feasibility, acceptability, and initial efficacy of RESTORE in healthcare workers on the frontline of the COVID-19 pandemic. We conducted an initial uncontrolled trial of RESTORE in 21 healthcare workers who were exposed to COVID-19-related traumatic or extremely stressful experiences in the context of their work and who screened positive for clinical levels of anxiety, depression, and/or PTSD symptoms. RESTORE was found to be feasible and safe, and led to statistically significant and large effect size improvements in anxiety, depression, and PTSD symptoms over the course of the intervention through follow-up. RESTORE has the potential to become a widely disseminable evidence-based intervention to address mental health symptoms associated with mass traumas.Clinical Trials Registration: This trial was registered with ClinicalTrials.gov ID: NCT04873622.

Anonymity: What does it mean and why is it important to anonymous living liver donors?

Anonymous living organ donation has recently become more common in select transplantation programs, with donors voluntarily offering a kidney or a lobe of their liver to those in need. These anonymous donations may be directed to a specific recipient or nondirected, and anonymity may be one way or reciprocal. Given their unique situation, we interviewed a cohort of anonymous living liver donors and explored their opinions surrounding anonymity and its implications in living liver donation. A total of 26 anonymous donors completed a semistructured qualitative interview consisting of questions regarding their experiences as a living liver donor. The interviews were audio-recorded, transcribed, and analyzed for common themes, specifically those pertaining to the donor's perceptions and experiences with anonymity. Five main themes related to anonymity were identified: (1) the moral importance of an unencumbered gift, (2) wanting internal satisfaction rather than seeking external accolades, (3) anonymity as a protection against potential negative outcomes in the recipient, (4) feelings of ambivalence toward meeting the recipient, and (5) concerns about negative perceptions among their own friends and family. These insights into the range of donors' attitudes toward anonymity will help improve awareness and provide the best possible mental and physical care for the anonymous donor.

Anonymous living liver donor perspectives on the role of family in their donation experience.

Anonymous living organ donation is an understudied but rapidly expanding sector in organ transplantation, in which donors choose to donate anonymously to a recipient in need. The family members and close support network of living donors often play a crucial role in the donation process, and their influence likely has a large impact on the decision to donate as well as the donor's physical and psychosocial state. However, there is limited data examining the impact donor families have on the anonymous donor, and in turn, the impact donation has on donors' families. To assess this, we analyzed a semi-structured qualitative interview on living donor experiences with 26 anonymous living liver donors for common themes concerning donor families. Responses surrounding donor families were grouped into three major categories: (1) family reactions to donation, ranging from (a) pride/support, (b) fear/worry, and (c) jealousy/anger; (2) the impact of donation on donor-family relationships, including (a) positive impacts, (b) negative impacts, (c) a positive ripple effect; (3) gaps in institutional support for donor families. This study provides unique information on anonymous living liver donor perceptions related to their families and will help improve existing programs to accommodate donor family needs and cater to donor relationships.

Growth through adversity: posttraumatic growth in anonymous living liver donors.

PURPOSE: Post-traumatic growth (PTG) is positive change that occurs after struggling with challenging life crises. Research on PTG has typically been limited to oncology populations, first-responders, and individuals in warzones. We report the experience of PTG amongst a sample of 26 anonymous live liver donors. METHODS: Anonymous donors were those with no biological connection or prior relationship with recipients. Twenty-six participants participated in a semi-structured qualitative interview examining their experience with, and outcomes of donation. Interview transcripts were analyzed for themes about PTG using the constant comparison method. RESULTS: While some donors indicated that donation had little lasting impact on their life, most cited significant personal and interpersonal changes resulting from the experience. The most common positive changes included deepened bonds with others, appreciation for personal strength, clearer life direction, legacy-building, and a connection to the transplant community. CONCLUSION: Despite the short-term physical trauma of living donor surgery, the act of anonymous donation appeared to be a catalyst for positive long-term psychological growth. These findings help to bolster the ethical argument in favour of anonymous donation.IMPLICATIONS FOR REHABILITATIONThere is a shortage of organ donors for recipients in need, and anonymous living liver donors can successfully reduce wait times and mortality rates for those on wait lists.There are some questions about the ethics of anonymous donation due to possible negative physical and psychological effects of donation surgery on donors.In a qualitative study, this study shows that donors ascribe significant meaning to, and derive many psychological benefits from, their donation experience.These findings provide insights about how to best support anonymous donors through and after their donation experience.

Development of RESTORE: an online intervention to improve mental health symptoms associated with COVID-19-related traumatic and extreme stressors.

Background: Frontline healthcare workers, recovered COVID+ patients who had severe illness, and close others of COVID+ patients who have recovered or died are at risk for clinical levels of mental health symptoms in the context of the COVID-19 pandemic. RESTORE (Recovering from Extreme Stressors Through Online Resources and E-health) was specifically designed for this context. RESTORE is a transdiagnostic guided online intervention adapted from evidence-based cognitive-behavioural therapies. Objectives: RESTORE was designed to address depression, anxiety, and posttraumatic stress disorder symptoms associated with exposure to COVID-19-related traumatic and extreme stressors, and to overcome multiple barriers to accessing psychotherapies. Method: This paper describes the intervention components and platform, as well as the principles used to develop RESTORE. Current research and future directions in developing and testing RESTORE are outlined. Results: Preliminary data from an initial uncontrolled trial evaluating RESTORE in frontline healthcare workers is highly promising. Conclusion: We believe RESTORE has great potential to provide accessible, evidence-based psychological intervention to those in great need.

Antecedentes: Los trabajadores de salud de primera línea, los pacientes de COVID positivo recuperados que tenían una enfermedad grave y las personas cercanas a los pacientes de COVID positivo que se han recuperado o fallecido están en riesgo de presentar niveles clínicos de síntomas de salud mental en el contexto de la pandemia de COVID-19. RESTORE (por sus siglas en inglés: Recovering from Extreme Stressors Through Online Resources and E-health: Recuperación de estresores extremos a través de recursos en línea y salud electrónica) fue diseñada específicamente para este contexto. RESTORE es una intervención en línea guiada transdiagnóstica adaptada de terapias cognitivo-conductuales basadas en la evidencia.Objetivos: RESTORE fue diseñado para abordar la depresión, la ansiedad y los síntomas del trastorno de estrés postraumático asociados con la exposición a factores estresantes traumáticos y extremos relacionados con COVID-19, y para superar múltiples barreras para acceder a psicoterapias.Método: Este artículo describe los componentes y la plataforma de la intervención, así como los principios utilizados para desarrollar RESTORE. Se describen las investigaciones actuales y las direcciones futuras para desarrollar y testear RESTORE.Resultados: Los datos preliminares de un ensayo inicial no controlado que evalúa RESTORE en trabajadores de salud de primera línea son muy prometedores.Conclusión: Creemos que RESTORE tiene un gran potencial para brindar una intervención psicológica accesible y basada en la evidencia a quienes más lo necesitan.

Results of Early Transplantation for Alcohol-Related Cirrhosis: Integrated Addiction Treatment With Low Rate of Relapse.

BACKGROUND & AIMS: In 2018, our team initiated a prospective pilot program to challenge the paradigm of the "6-month rule" of abstinence for patients with alcohol-related liver disease (ALD) requiring transplant. Our pilot involved an in-depth examination of patients' alcohol use, social support, and psychiatric comorbidity, as well as the provision of pre- and post-transplantation addiction treatment. METHODS: Patients with ALD were assessed for inclusion in the pilot by a multidisciplinary team. Relapse prevention therapy was provided directly to all patients deemed to meet the program's inclusion criteria. Random biomarker testing for alcohol was used pre and post transplantation. RESULTS: We received 703 referrals from May 1, 2018 to October 31, 2020. After fulfilling the program's criteria, 101 patients (14%) were listed for transplantation and 44 (6.2%) received transplants. There were no significant differences in survival rates between those receiving transplants through the pilot program compared with a control group with more than 6 months of abstinence (P = .07). Three patients returned to alcohol use during an average post-transplantation follow-up period of 339 days. In a multivariate analysis, younger age and lower Model for End-Stage Liver Disease scores at listing were associated with an increased likelihood of a return to alcohol use (P < .05); length of abstinence was not a predictor. CONCLUSIONS: Our prospective program provided direct monitoring and relapse prevention treatment for patients with ALD and with less than 6 months of abstinence and resulted in a reduction of post-transplantation return to drinking. This pilot study provides a framework for the future of more equitable transplant care.

Individual- and Institutional-level Concerns of Health Care Workers in Canada During the COVID-19 Pandemic: A Qualitative Analysis.

Importance: Mental health and coping difficulties among health care workers (HCWs) have been reported during pandemics and particularly during the COVID-19 pandemic. Objective: To examine sources of distress and concern for HCWs in Canada during the COVID-19 pandemic. Design, Setting, and Participants: In this qualitative study, a critical discourse analysis was performed of questions posed by HCWs to hospital senior leadership between March 16, 2020, and December 1, 2020, through an online employee forum as part of a larger mixed-methods evaluation of a stepped-care mental health support program for HCWs at 1 of Canada's largest health care institutions. Questions could be submitted online anonymously in advance of the virtual forums on COVID-19 by any of the University Health Network's 21 555 employees, and staff members were able to anonymously endorse questions by upvoting, indicating that an already posed question was of interest. Main Outcomes and Measures: Themes, text structure, and rhetorical devices used within the questions were analyzed, taking into consideration their larger institutional and societal context. Results: Unique individual views of the forums ranged from 2062 to 7213 during the study period. Major individual-level concerns related to risks of contamination and challenges coping with increased workloads as a result of the pandemic intersected with institutional-level challenges, such as feeling or being valued within the health care setting and long-standing stratifications between types of HCWs. Concerns were frequently reported in terms of calls for clarity or demands for transparency from the institutional leadership. Conclusions and Relevance: The findings of this qualitative study suggest that larger institutional-level and structural concerns need to be addressed if HCWs are to be engaged in support and coping programs. Potential service users may be dissuaded from seeing their needs as being met by workplace mental health interventions that solely relate to individual-level concerns.

Lung transplant recipient attitudes and beliefs on accepting an organ that is positive for hepatitis C virus.

INTRODUCTION: Little is known about patient perceptions regarding HCV+ organ use in non-HCV-infected recipients. This study examined factors influencing the decision to accept HCV+ organs and the resulting impacts. METHODS: Adult lung transplant (LT) patients or candidates who had consented to receive an HCV+ organ completed a survey including multiple choice, a five-point Likert scale, and free-text answers. A total of 67 LT recipients or candidates who had consented to receive HCV+ organs were enrolled, of which 21/67 (31%) received HCV+ lungs, 39 (58%) HCV- lungs, and seven (10%) were still waiting. RESULTS: Pre-transplant, 50/67 (75%) patients felt it was either "completely safe" or "very safe" to accept an HCV+ organ. Although 22/67 (33%) said they never or rarely took risks, they still made the decision to accept an HCV+ organ. Common reported reasons were desperation, perception of having "no choice," and increasing symptom severity. In the subset of patients that were transplanted with an HCV+ organ (n = 21), only 12.5% reported second thoughts about accepting. Post-transplant, the majority (87.5%) never felt any anxiety about HCV and most (83%) reported no impact from HCV. Perception of treatment tolerability and ease was highly favorable. CONCLUSION: Use of HCV+ organs demonstrated minimal detrimental perceived impacts on lung transplant patients. Patients generally found the experience to be very positive.

The psychological burden of waiting for procedures and patient-centred strategies that could support the mental health of wait-listed patients and caregivers during the COVID-19 pandemic: A scoping review.

BACKGROUND: Waiting for procedures delayed by COVID-19 may cause anxiety and related adverse consequences. OBJECTIVE: To synthesize research on the mental health impact of waiting and patient-centred mitigation strategies that could be applied in the COVID-19 context. METHODS: Using a scoping review approach, we searched 9 databases for studies on waiting lists and mental health and reported study characteristics, impacts and intervention attributes and outcomes. RESULTS: We included 51 studies that focussed on organ transplant (60.8%), surgery (21.6%) or cancer management (13.7%). Most patients and caregivers reported anxiety, depression and poor quality of life, which deteriorated with increasing wait time. The impact of waiting on mental health was greater among women and new immigrants, and those of younger age, lower socio-economic status, or with less-positive coping ability. Six studies evaluated educational strategies to develop coping skills: 2 reduced depression (2 did not), 1 reduced anxiety (2 did not) and 2 improved quality of life (2 did not). In contrast, patients desired acknowledgement of concerns, peer support, and periodic communication about wait-list position, prioritization criteria and anticipated procedure date. CONCLUSIONS: Findings revealed patient-centred strategies to alleviate the mental health impact of waiting for procedures. Ongoing research should explore how to optimize the impact of those strategies for diverse patients and caregivers, particularly in the COVID-19 context. PATIENT OR PUBLIC CONTRIBUTION: Six patients and four caregivers waiting for COVID-19-delayed procedures helped to establish eligibility criteria, plan data extraction and review a draft and final report.

The Meaning Behind the Scar: Anonymous Live Liver Donors' Perceptions of Their Surgical Scars.

BACKGROUND: Scarring can greatly impact quality of life for individuals (ie, causing depression posttraumatic stress disorder and body image issues). Those who wish to be anonymous live liver donors are warned of the potential negative psychological impacts associated with the large scar left from liver donation surgery. Given the unique degree of autonomy that these patients have over their surgery, we explore whether a sample of 26 anonymous live liver donors experience a unique relationship with their scar. METHODS: Anonymous donors participated in a semistructured qualitative interview examining their experience with donation. Interviews were audio-recorded, transcribed, and analyzed using the constant comparison method for themes pertaining, to participants' perception of their scar. RESULTS: Five main themes were identified-a marker of satisfaction about the donation experience, a physical reminder of donation, a trigger for recipient-related thoughts, an awareness tool, and a potential threat to anonymity. Donors did not voice any body image or cosmetic concerns due to their scars. Instead, discussions about the negative aspects of scarring centered around the identifying nature of their scar. CONCLUSIONS: These findings help underscore the distinctiveness of anonymous living liver donors as a patient population. Preparing anonymous living liver donors for different types of cosmetic issues relating to their scar (ie, as a possible threat to their desired anonymity) may be more appropriate than preparing them in the same way as other donor populations.