Managing risk during care transitions when approaching end of life: a qualitative study of patients' and health care professionals' decision making

BACKGROUND: Increasing importance is being placed on the coordination of services at the end of life. AIM: To describe decision-making processes that influence transitions in care when approaching the end of life. DESIGN: Qualitative study using field observations and longitudinal semi-structured interviews. SETTING/PARTICIPANTS: Field observations were undertaken in three sites: a residential care home, a medical assessment unit and a general medical unit in New Zealand. The Supportive and Palliative Care Indicators Tool was used to identify participants with advanced and progressive illness. Patients and family members were interviewed on recruitment and 3-4 months later. Four weeks of fieldwork were conducted in each site. A total of 40 interviews were conducted: 29 initial interviews and 11 follow-up interviews. Thematic analysis was undertaken. FINDINGS: Managing risk was an important factor that influenced transitions in care. Patients and health care staff held different perspectives on how such risks were managed. At home, patients tolerated increasing risk and used specific support measures to manage often escalating health and social problems. In contrast, decisions about discharge in hospital were driven by hospital staff who were risk-adverse. Availability of community and carer services supported risk management while a perceived need for early discharge decision making in hospital and making 'safe' discharge options informed hospital discharge decisions. CONCLUSION: While managing risk is an important factor during care transitions, patients should be able to make choices on how to live with risk at the end of life. This requires reconsideration of transitional care and current discharge planning processes at the end of life

Covid-19 research evidence: An international survey exploring views on useful sources, preferred formats, and accessibility

INTRODUCTION: In a pandemic, stakeholders such as policy makers, clinicians, patients, and the public need access to high-quality, timely, relevant research evidence in a format that is understandable and applicable. OBJECTIVES: An online survey was used to determine where a global audience finds research evidence about COVID-19 and how they prefer to keep up to date. METHODS AND MATERIALS: We conducted an online survey of people interested in research in English and Spanish. We used a convenience sample of people visiting websites and social media accounts of Cochrane, an international organisation that collates systematic reviews of research.  RESULTS: 831 people with various roles and locations responded over a short period with little active promotion. Healthcare professionals, members of the public, and policy influencers wanted research evidence to inform decisions about COVID-19. More than half found research evidence from government websites (52%), international organisations (57%), journals (56%), and evidence collation organisations (60%) useful. People wanted research evidence about COVID-19 formats such as lay summaries (60%), online systematic reviews (60%), short summaries with commentaries (51%), and visual summaries (48%). People preferred to be kept up to date about COVID-19 research via email updates and newsletters, tailored to people’s interests (34%), traditional media (13%) and social media (12%). CONCLUSIONS: It was feasible to collect feedback rapidly using a simple online survey. Websites from official organisations were key sources of COVID-19 research evidence. More research is needed on how best to provide evidence that is easy to access and understand

Factors to Consider During Identification and Invitation of Individuals in a Multi-stakeholder Research Partnership

BACKGROUND: Health research teams increasingly partner with stakeholders to produce research that is relevant, accessible, and widely used. Previous work has covered stakeholder group identification. OBJECTIVE: We aimed to develop factors for health research teams to consider during identification and invitation of individual representatives in a multi-stakeholder research partnership, with the aim of forming equitable and informed teams. DESIGN: Consensus development. PARTICIPANTS: We involved 16 stakeholders from the international Multi-Stakeholder Engagement (MuSE) Consortium, including patients and the public, providers, payers of health services/purchasers, policy makers, programme managers, peer review editors, and principal investigators. APPROACH: We engaged stakeholders in factor development and as co-authors of this manuscript. Using a modified Delphi approach, we gathered stakeholder views concerning a preliminary list of 18 factors. Over two feedback rounds, using qualitative and quantitative analysis, we concentrated these into ten factors. KEY RESULTS: We present seven highly desirable factors: ‘expertise or experience’, ‘ability and willingness to represent the stakeholder group’, ‘inclusivity (equity, diversity and intersectionality)’, ‘communication skills’, ‘commitment and time capacity’, ‘financial and non-financial relationships and activities, and conflict of interest’, ‘training support and funding needs’. Additionally, three factors are desirable: ‘influence’, ‘research relevant values’, ‘previous stakeholder engagement’. CONCLUSIONS: We present factors for research teams to consider during identification and invitation of individual representatives in a multi-stakeholder research partnership. Policy makers and guideline developers may benefit from considering the factors in stakeholder identification and invitation. Research funders may consider stipulating consideration of the factors in funding applications. We outline how these factors can be implemented and exemplify how their use has the potential to improve the quality and relevancy of health research. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11606-022-07411-w

Dermatofibrosarcoma protuberans treated by micrographic surgery

Dermatofibrosarcoma protuberans is an uncommon cutaneous tumour which rarely metastasises. However, local recurrence following apparently adequate surgical excision is well recognised, presumably as a result of sub-clinical contiguous growth, for which micrographically controlled excision would be a logical treatment. A retrospective study of all patients treated by micrographic surgery, from April 1995–March 2000, at a tertiary skin oncology centre. Twenty-one patients (11 males), age 14 to 71 years with dermatofibrosarcoma protuberans on the trunk (10 patients), groin (four), head and neck (four), and limbs (three) were treated. In 15 patients one micrographic layer cleared the tumour, and four were cleared with two layers. For one patient the second stage was completed by conventional excision guided by positive margins. Another patient with a multiply recurrent perineal dermatofibrosarcoma protuberans, not cleared in one area after two layers, died from a pulmonary embolus before total clearance could be achieved. There was no correlation between tumour size and lateral excision margin. No recurrence was observed during the follow-up, from 21 to 80 months, median 47 months. The study provides further support for micrographic surgery as the treatment of choice for dermatofibrosarcoma protuberans

Manifestation and parental assessment of children’s cancer pain at home: an exploratory mixed methods study

Aims and objectives To describe pain manifestation in children with cancer at home and understand how parents assess this pain. Background Pain is experienced by children with cancer throughout their cancer journey. Short‐term, and into survivorship, pain has negative physical and psychological consequences. Changes in treatment location mean children with cancer spend more time at home. Little is known about pain experienced by children at home or how parents assess this pain. Design A mixed methods convergent parallel study was reported using STROBE. Method Parents of children with cancer on active treatment were recruited from one tertiary cancer centre. Parental attitudes towards pain expression were assessed using surveys. Parents recorded their child’s pain manifestation in pain diaries kept for one month. Interviews captured a deeper understanding of pain manifestation and how parents assess this pain at home. Integration occurred after each data collection method was analysed separately. Results Predominantly children were not in pain at home. However, most children experienced at least one episode of problematic pain over the pain diary period. Surveys showed parents held misconceptions regarding children’s pain expression. Interviews diverge from surveys and suggest parents used a range of information sources to assess pain. Conclusion Children with cancer may differ from one another in the manifestation of pain at home resulting in multiple pain trajectories. Parents of children with cancer are able to adequately assess their child’s pain using information from multiple source

Identifying priority review questions for Cochrane Eyes and Vision: protocol for a priority setting exercise

INTRODUCTION: Cochrane Eyes and Vision (CEV) is an international network of individuals working to prepare, maintain and promote access to systematic reviews of interventions to treat, prevent or diagnose eye diseases or vision impairment. CEV plans to undertake a priority setting exercise to identify systematically research questions relevant to our scope, and to formally incorporate input from a wide range of stakeholders to set priorities for new and updated reviews. METHODS AND ANALYSIS: The scope of CEV is broad and our reviews include conditions that are common and have a high global disease burden, for example, cataract and dry eye disease, and conditions that are rare but have a high impact on quality of life and high individual cost such as eye cancer. We plan to focus on conditions prioritised by WHO during the development of the Package of Eye Care Interventions. These conditions were selected based on a combination of data on disease magnitude, healthcare use and expert opinion. We will identify priority review questions systematically by summarising relevant data on research in Eyes and Vision from a range of sources, and compiling a list of 10-15 potential review questions (new and/or updates) for each condition group. We will seek the views of external and internal stakeholders on this list by conducting an online survey. Equity will be a specific consideration. ETHICS AND DISSEMINATION: The study has been approved by the ethics committee of the London School of Hygiene & Tropical Medicine. We will disseminate the findings through Cochrane channels and prepare a summary of the work for publication in a peer-reviewed journal

Understanding the toolbox: A mixed methods study of attitudes, barriers and facilitators in parental intervention of children’s cancer pain at home

Children with cancer experience pain throughout their cancer trajectory. Pain has short- and long-term negative consequences for children physically and psychologically. Children with cancer spend more time at home with their families and less time in hospital. While this has benefits for quality of life, it shifts responsibility for pain management from healthcare professionals to parents. Little is known about parents’ pain management abilities in this setting. This study aimed to understand how parents of children with cancer manage their child’s pain at home. A convergent, parallel, mixed methods design including pain diaries, surveys and interviews was used. Participants were parents of children with cancer on active treatment recruited from one tertiary cancer centre. Each data collection method was analysed separately and then integrated. Parents frequently under-medicate their child’s pain at home. Practical barriers including the analgesic context and children finding medications unpalatable led parents to prefer non-pharmacological interventions. Attitudinal and practical barriers result in parents having an “empty toolbox” of pharmacological interventions. Consequently non-pharmacological interventions are essential to parents managing their child’s cancer pain at home