ABSTRACT
Domestic abuse is a worldwide public health and social issue which impacts the health and wellbeing of those experiencing abuse and their families. People living with a life-limiting illness are at increased risk of domestic abuse because they are often frail, isolated, and dependent on others. Little is known about domestic abuse and the coexistence of life-limiting illness and existing support for those experiencing or at risk of abuse. A scoping review was conducted to identify factors that shape and characterise experiences of adults with a life-limiting illness affected by domestic abuse and the health and social care practitioners and other organisations that support them. The Joanna Briggs Institute (JBI) methodology and checklist for Preferred Reporting Items for Systematic Reviews and Meta Analyses-Extension for Scoping Reviews (PRISMA-ScR) were applied. Five databases were systematically searched from 2000 to 2021: MEDLINE;CINAHL;PsycINFO;Social Sciences Citation Index (Web of Science);and ProQuest Dissertations and Global. Twenty-one papers met the inclusion criteria. Most studies were conducted in North America, with female participants living with cancer, and conducted in health and community settings. There were no studies involving third sector organisations. A range of abusive behaviours was reported resulting in missed medical appointments, delays in screening leading to late diagnosis, and palliative rather than curable treatment. Abuse also impacted on the physical, emotional, and psychological wellbeing of the person experiencing the abuse, which increased stress levels and could have a detrimental effect on their health. Identifying domestic abuse within the context of life-limiting illness was reported to be challenging for health and social care professionals, as was responding to and managing a disclosure. Further research is needed to address existing knowledge in order to inform policy and practice to identify and manage domestic abuse where it coexists with life-limiting illness.
ABSTRACT
BackgroundWe aimed to create a questionnaire to assess the health-related quality of life including functioning, symptoms, and general health status of adult patients with current or previous COVID-19. Here, we report on Phase I and II of the development.MethodsInternationally recognized methodology for questionnaire development was followed. In Phase I, a comprehensive literature review was performed to identify relevant COVID-19 issues. Decisions for inclusion, exclusion, and data extraction were completed independently in teams of two and then compared. The resulting issues were discussed with health care professionals (HCPs) and current and former COVID-19 patients. The input of HCPs and patients was carefully considered, and the list of issues updated. In Phase II, this updated list was operationalized into items/questions.ResultsThe literature review yielded 3342 publications, 339 of which were selected for full-text review, and 75 issues were identified. Discussions with 44 HCPs from seven countries and 52 patients from six countries showed that psychological symptoms, worries, and reduced functioning lasted the longest for patients, and there were considerable discrepancies between HCPs and patients concerning the importance of some of the symptoms. The final list included 73 issues, which were operationalized into an 80-item questionnaire.ConclusionThe resulting COVID-19 questionnaire covers health–related quality of life issues relevant to COVID-19 patients and is available in several languages. The next steps include testing of the applicability and patients’ acceptability of the questionnaire (Phase IIIA) and preliminary psychometric testing (Phase IIIB).
ABSTRACT
PURPOSE: This systematic review was performed to identify all relevant health-related quality of life (HRQoL) issues associated with COVID-19. METHODS: A systematic literature search was undertaken in April 2020. In four teams of three reviewers each, all abstracts were independently reviewed for inclusion by two reviewers. Using a pre-defined checklist of 93 criteria for each publication, data extraction was performed independently by two reviewers and subsequently compared and discussed. If necessary, a third reviewer resolved any discrepancies. The search was updated in February 2021 to retrieve new publications on HRQoL issues including issues related to the long-term consequences of COVID-19. RESULTS: The search in April 2020 identified 3342 potentially relevant publications, and 339 publications were selected for full-text review and data extraction. We identified 75 distinct symptoms and other HRQoL issues categorized into 12 thematic areas; from general symptoms such as fever, myalgia, and fatigue, to neurological and psychological issues. The updated search revealed three extra issues experienced during active disease and long-term problems with fatigue, psychological issues and impaired cognitive function. CONCLUSION: This first comprehensive systematic review provides a detailed overview of the wide range of HRQoL issues experienced by patients with COVID-19 throughout the course of the disease. It demonstrates the devastating impact of the disease and provides critically important information for clinicians, to enable them to better recognize the disease and to provide knowledge important for treatment and follow-up. The results provided the foundation for the international development of a COVID-19 specific patient-reported HRQoL questionnaire.