Healthcare provider's perceptions of bleeding in patients with acute leukaemia undergoing induction chemotherapy: A qualitative study

Background: Bleeding is a primary outcome for many transfusion‐related trials in acute leukaemia (AL) patients, typically graded using the World Health Organisation (WHO) bleeding scale (clinically significant bleed (CSB) is ≥grade 2). This composite outcome fails to differentiate minor bleeds that may not be significant, poorly represents the total burden of bleeding and lacks input from healthcare providers (HCPs) and patients. As part of a multi‐step project to create a better bleeding tool for trials, our objective was to identify HCPs' perspectives on the components of CSB in AL patients. Study Design and Methods: Using qualitative description, we interviewed 19 physicians and nurses who care for AL patients undergoing induction chemotherapy. Participants were recruited from professional organisations, networks and social media. An inductive approach to conventional content analysis was used. Results: HCPs identified features of CSB as the anatomical site of bleeding, amount of bleeding, need for intervention and changes in vital signs. Using these characteristics, bleeding events were categorised into three groups: clinically significant, could evolve into a CSB and not clinically significant. HCPs considered the patient's condition, bleeding history and clinical intuitions when deciding whether a bleed could escalate into serious bleeding. Discussion: Using data from HCPs, we categorised bleeds as clinically significant, could evolve into a CSB, and not significant. A study of patients' perspectives on the importance of different kinds of bleeding is the next step to creating a bleeding definition that is informed by evidence, clinicians and patients

Pregnant and lactating people’s strategies to mitigate the risk of cannabis consumption

Background: Multiple studies have demonstrated that pregnant and lactating people who use cannabis perceive a variety of benefits from that use, offering some explanation of why rates of use continue to increase. Objectives: The aim of this study was to explore pregnant and lactating people’s perceptions of the risks of cannabis use and understand what steps, if any, they take to mitigate these risks. Design: Qualitative description. Methods: We analyzed semi-structured interviews with 52 Canadians who made the decision to start, stop, or continue using cannabis during pregnancy or lactation between 2019 and 2021. Data collection iterated with analysis. We used a conventional (inductive) approach to content analysis. Results: Perception of risk was found to be an essential component of decision-making about cannabis use. We identified a cycle of “risk identification,” “management,” and “observation” of effects. First, the pregnant or lactating person assesses the risks and weighs them against the perceived benefits of cannabis use. Second, they take action to minimize risks, with some choosing abstinence. Others, often those who were using cannabis to manage symptoms, continued cannabis use but devised a variety of other risk mitigation strategies such as, decreasing the amount or frequency of their use, changing the form of cannabis, and strategically timing their use with caregiving responsibilities. The final stage of the cycle involves seeking information about whether or not the initial perceived risk has manifested after implementing mitigation strategies, through observations and clinical information about the pregnancy or child. Conclusion: Participants consistently engaged in deliberation about the risks and benefits associated with their perinatal cannabis use. Nearly all implemented strategies intended to minimize risk. Our results highlight the need for more research to inform clear public health messaging about risk mitigation to minimize the potential harms of perinatal cannabis use. This work informs clinicians about patient-perceived risks and mitigation strategies which could in turn help inform shared decision-making conversations

Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis

Abstract Background With the sharp increase in the involvement of patients (including family and informal caregivers) as active participants, collaborators, advisors and decision-makers in health systems, a new role has emerged: the patient partner. The role of patient partner differs from other forms of patient engagement in its longitudinal and bidirectional nature. This systematic review describes extant work on how patient partners are conceptualized and engaged in health systems. In doing so, it furthers the understanding of the role and activities of patient partners, and best practices for future patient partnership activities. Methods A systematic review was conducted of peer-reviewed literature published in English or French that describes patient partner roles between 2000 and 2021 in any country or sector of the health system. We used a broad search strategy to capture descriptions of longitudinal patient engagement that may not have used words such as “partner” or “advisor”. Results A total of 506 eligible papers were identified, representing patient partnership activities in mostly high-income countries. These studies overwhelmingly described patient partnership in health research. We identified clusters of literature about patient partnership in cancer and mental health. The literature is saturated with single-site descriptive studies of patient partnership on individual projects or initiatives. There is a lack of work synthesizing impacts, facilitating factors and outcomes of patient partnership in healthcare. Conclusions There is not yet a consolidated understanding of the role, activities or impacts of patient partners. Advancement of the literature has been stymied by a lack of consistently used terminology. The literature is ready to move beyond single-site descriptions, and synthesis of existing pockets of high-quality theoretical work will be essential to this evolution

What counts as patient-important upper gastrointestinal bleeding in the ICU? A mixed-methods study protocol of patient and family perspectives

Introduction Clinically important upper gastrointestinal bleeding is conventionally defined as bleeding accompanied by haemodynamic changes, requiring red blood cell transfusions or other invasive interventions. However, it is unclear if this clinical definition reflects patient values and preferences. This protocol describes a study to elicit views from patients and families regarding features, tests, and treatments for upper gastrointestinal bleeding that are important to them.Methods and analysis This is a sequential mixed-methods qualitative-dominant multi-centre study with an instrument-building aim. We developed orientation tools and educational materials in partnership with patients and family members, including a slide deck and executive summary. We will invite intensive care unit (ICU) survivors and family members of former ICU patients to participate. Following a virtual interactive presentation, participants will share their perspectives in an interview or focus group. Qualitative data will be analysed using inductive qualitative content analysis, wherein codes will be derived directly from the data rather than using preconceived categories. Concurrent data collection and analysis will occur. Quantitative data will include self-reported demographic characteristics. This study will synthesise the values and perspectives of patients and family members to create a new trial outcome for a randomised trial of stress ulcer prophylaxis. This study is planned for May 2022 to August 2023. The pilot work was completed in Spring 2021.Ethics and dissemination This study has ethics approval from McMaster University and the University of Calgary. Findings will be disseminated via manuscript and through incorporation as a secondary trial outcome on stress ulcer prophylaxis.Trial registration number NCT05506150