Patient-important upper gastrointestinal bleeding in the ICU: A mixed-methods study of patient and family perspectives.

INTRODUCTION: The objective of this study was to create a definition of patient-important upper gastrointestinal bleeding during critical illness as an outcome for a randomized trial. DESIGN: This was a sequential mixed-methods qualitative-dominant multi-center study with an instrument-building aim. In semi-structured individual interviews or focus groups we elicited views from survivors of critical illness and family members of patients in the intensive care unit (ICU) regarding which features indicate important gastrointestinal bleeding. Quantitative demographic characteristics were collected. We analyzed qualitative data using inductive content analysis to develop a definition for patient-important upper gastrointestinal bleeding. SETTING: Canada and the United States. PARTICIPANTS: 51 ICU survivors and family members of ICU patients. RESULTS: Participants considered gastrointestinal bleeding to be important if it resulted in death, disability, or prolonged hospitalization. The following also signaled patient-important upper gastrointestinal bleeding: blood transfusion, vasopressors, endoscopy, CT-angiography, or surgery. Whether an intervention evinced concern depended on its effectiveness, side-effects, invasiveness and accessibility; contextual influences included participant familiarity and knowledge of interventions and trust in the clinical team. CONCLUSIONS: Survivors of critical illness and family members described patient-important upper gastrointestinal bleeding differently than current definitions of clinically-important upper gastrointestinal bleeding.

Predictors of disease recurrence in high-risk non-metastatic renal cell carcinoma patients post-surgical resection A single-center, retrospective study.

INTRODUCTION: Approximately 20-40% of kidney cancer patients treated for localized disease experience post-surgical recurrence. Several prognostic models exist to help clinicians determine the risk of distant recurrence, but these models vary in criteria and endpoints. We aimed to examine the recurrence rate and clinicopathologic factors as predictors of recurrence in high-risk renal cell carcinoma (RCC) patients. METHODS: We conducted a single-center, retrospective chart review of pT3 RCC patients who underwent a nephrectomy between January 2000 and December 2015. Patients registered in clinical trials for adjuvant therapy and those with fewer than three years of followup were excluded. Kaplan-Meier survival analysis and univariate and multivariate Cox regression were performed to identify the rate and predictors of disease recurrence. RESULTS: Eighty-eight pT3 RCC patients were included, and 39 patients had recurrence with a median of 23.5 months (range 1.6-127.5). Nine patients had disease recurrence beyond 58 months. Kaplan-Meier log-rank tests identified patients with negative surgical margins and low Fuhrman nuclear grades had greater recurrence-free survival. Univariate Cox regression revealed positive surgical margins, high Fuhrman nuclear grade, and large tumor sizes were significant predictors. In the multivariate Cox regression model, high Fuhrman nuclear grade and positive surgical margins were significant predictors of recurrence. CONCLUSIONS: Disease recurrence occurred in 44% of pT3-staged patients. High Fuhrman nuclear grade and positive surgical margins were associated with time to recurrence. Physicians should use prognostic models to facilitate conversations about disease recurrence and continue to monitor high-risk patients beyond the recommended five-year followup period. We recommend monitoring pT3 resected patients for up to 10 years post-surgery.

"There's So Much More Support We Could Have Provided": Child Life Specialists' Stories of the Challenges Working in Adult Oncology.

A cancer diagnosis in patients who are parents of minor children is uniquely stressful for both parents and children. Children need developmentally appropriate information and support to help reduce their fears and worries. Child life specialists (CLSs) are health professionals who work in pediatric environments to support children and families with the stress and uncertainty of illnesses. Increasingly, CLSs have been called upon to support children of patients in adult clinical environments. Our objective was to elucidate CLS caregiving narratives related to working with children of adult cancer patients. We used narrative inquiry to interview four CLSs working in adult oncology. Canadian CLSs who have experience providing care for children and families affected by parental cancer were recruited via convenience sampling. We used narrative analysis methods that included multiple close reads of the data, generating narrative themes, and noting conflicts or tensions in the data. CLSs' caregiving stories often highlighted the complexities of working in an adult oncology environment. Their narratives included challenges in providing optimal care to the children, including family-level barriers (such as parental wishes to withhold information from their children) and systemic barriers (such as late referrals and limited options for bereavement support). CLS participants identified several challenges of working with families in adult oncology. The CLSs highlighted a desire for additional institutional support for children of adult oncology patients and for themselves working in these environments in order to achieve what they believed to be optimal care.

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.

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.

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

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.

Making informed choices about cannabis use during pregnancy and lactation: A qualitative study of information use.

BACKGROUND: Cannabis use during pregnancy and lactation continues to increase as some perceive cannabis to be helpful for symptom management and coping. As such, pregnant and lactating people are faced with challenging decisions, weighing benefits against the potential risks of cannabis use. To help clinicians facilitate informed choices, we explored the self-identified information needs of pregnant and lactating people who are deciding whether or not to use cannabis. We aimed to describe the modes and sources of their information-seeking and their satisfaction with the information they found. METHODS: We interviewed 52 people in Canada who made the decision to start, stop, or continue using cannabis during pregnancy and lactation. Participants were recruited from advertisements in prenatal clinics and on social media. We utilized an inductive approach to analysis focused on information used in decision-making about cannabis use, including the process of seeking and evaluating that information. RESULTS: Participants were deliberate in their search for information, most commonly seeking information on risks of use. Information sources were mainly online material or people in their social networks. Clinicians were not commonly described as a knowledgeable or supportive source of information. Overwhelmingly, participants described the information they found as insufficient and emphasized the need for more comprehensive and trustworthy sources of information. CONCLUSIONS: Participants identified distinct and unmet information needs associated with their decision to use cannabis. They described a desire for clear evidence about the impact of cannabis use, including information about how to balance the benefits they perceived from cannabis use with the risks of harm.

Pregnant People's Perspectives On Cannabis Use During Pregnancy: A Systematic Review and Integrative Mixed-Methods Research Synthesis.

INTRODUCTION: Rates of perinatal cannabis use are rising, despite clinical evidence about the potential for harm. Accordingly, pregnant and lactating people who perceive a benefit from cannabis use may have a difficult time making informed decisions about cannabis use. METHODS: We conducted a systematic review of mixed-methods research to synthesize existing knowledge on the perspectives of pregnant people and their partners about cannabis use in pregnancy. Six health and social science databases were searched up until May 30, 2021. There were no methodological, time, or geographic limits applied. We employed a convergent integrative approach to the inductive analysis of findings from all studies. RESULTS: We identified 26 studies describing views of 17,781 pregnant and postpartum people about cannabis use in pregnancy. No studies describing the views of partners were identified, and only one study specifically addressed the perspectives of lactating people. Comparative analysis revealed that whether cannabis was studied alone or grouped with other substances resulted in significant diversity in descriptions of participant decision-making priorities and perceptions of risks and benefits. Studies of cannabis alone demonstrated a complex decision-making process whereby perceived benefits are balanced against the available information about risk, which is often unclear and uncertain. Clear and helpful information was difficult to identify, and health care providers were not described as a helpful and trusted resource for decision-making. DISCUSSION: Decision-making about cannabis use is difficult for pregnant and lactating people who perceive a benefit from this use, although this decisional difficulty is seldom reflected in studies that examine cannabis as one of multiple substances that pregnant or lactating people may use. Our review suggests several approaches clinicians may take to encourage open and supportive conversations to facilitate informed decisions about cannabis use during the perinatal period.

Clinician responses to cannabis use during pregnancy and lactation: a systematic review and integrative mixed-methods research synthesis.

BACKGROUND: Perinatal cannabis use is increasing, and clinician counselling is an important aspect of reducing the potential harm of cannabis use during pregnancy and lactation. To understand current counselling practices, we conducted a systematic review and integrative mixed-methods synthesis to determine "how do perinatal clinicians respond to pregnant and lactating patients who use cannabis?" METHODS: We searched 6 databases up until 2021-05-31. Eligible studies described the attitudes, perceptions, or beliefs of perinatal clinician about cannabis use during pregnancy or lactation. Eligible clinicians were those whose practice particularly focusses on pregnant and postpartum patients. The search was not limited by study design, geography, or year. We used a convergent integrative analysis method to extract relevant findings for inductive analysis. RESULTS: Thirteen studies were included; describing perspectives of 1,366 clinicians in 4 countries. We found no unified approach to screening and counselling. Clinicians often cited insufficient evidence around the effects of perinatal cannabis use and lacked confidence in counselling about use. At times, this meant clinicians did not address cannabis use with patients. Most counselled for cessation and there was little recognition of the varied reasons that patients might use cannabis, and an over-reliance on counselling focussed on the legal implications of use. CONCLUSION: Current approaches to responding to cannabis use might result in inadequate counselling. Counselling may be improved through increased education and training, which would facilitate conversations to mitigate the potential harm of perinatal cannabis use while recognizing the benefits patients perceive.

Cannabis use during pregnancy and breastfeeding is common and understanding current physician counselling approaches is important to identify gaps and to make suggestions for practice. We conducted a systematic review of the literature to understand how physicians respond to pregnant or breastfeeding patients who use cannabis. We found 13 eligible articles in our review and our analysis showed that there was no common approach to screening and counselling patients. Physicians often described needing more training and education to support their confidence. Additionally, physicians often did not address the various medical reasons for which patients might use cannabis during pregnancy and breastfeeding. We suggest that counselling approaches may be improved through increased education and training. This could facilitate conversations to help mitigate the potential harm of cannabis use while recognizing the benefits patients perceive and thus establish strong patient­physician relationships.

The perceptions and beliefs of cannabis use among Canadian genitourinary cancer patients.

INTRODUCTION: The legalization of recreational cannabis in Canada in 2018 has led to many patients being curious about the benefits of taking cannabis in conjunction with their cancer treatment. We investigated the perceptions among genitourinary (GU) cancer patients regarding cannabis use as part of their care plans. METHODS: A survey was created to explore current cannabis use behaviors, reasons for cannabis use, and the beliefs of cannabis usefulness towards cancer-related care, including cancer treatment, among GU cancer patients. The survey was distributed across Canada online via RedCAP through social media platforms, email, and patient advocacy groups. The survey was active from August to December 2020. RESULTS: Of eighty-five responses, 52 met inclusion for analysis. Participants included 11 bladder, 26 kidney, and 15 prostate cancer patients. Many (48.1%) participants used cannabis daily and 75% had been using it for more than one year. Cannabis was consumed through oil-based products, edibles, and smoking. The most common reasons for using cannabis were cancer-related anxiety, to prevent cancer progression, cancer-related pain, recreational use, and other, non-cancer-related illness or symptoms. Participants believed cannabis improved their sleep (70.2%), anxiety (65.9%), and overall mood (72.3%). Most participants were either unsure (38.3%) or neutral (31.9%) in the belief that cannabis might decrease their cancer progression. CONCLUSIONS: GU cancer patients use cannabis for a variety of cancer- and non-cancer-related symptoms. Many patients believe cannabis has benefited their cancer-related symptoms. These findings highlight the importance of healthcare providers remaining familiar with current evidence on cannabis to support patient conversations about cannabis use.

Reasons for cannabis use during pregnancy and lactation: a qualitative study.

BACKGROUND: Cannabis use among pregnant and lactating people is increasing, despite clinical evidence showing that cannabis use may be associated with low birth weight and childhood developmental deficits. Our objective was to understand why pregnant and lactating people use cannabis and how these motivations change across perinatal stages. METHODS: Using qualitative, constructivist grounded theory methodology, we conducted telephone and virtual interviews with 52 individuals from across Canada. We selected participants using maximum variation and theoretical sampling. They were eligible if they had been pregnant or lactating within the past year and had decided to continue, cease or decrease their cannabis use during the perinatal period. RESULTS: We identified 3 categories of reasons that people use cannabis during pregnancy and lactation: sensation-seeking for fun and enjoyment; symptom management of chronic conditions and conditions related to pregnancy; and coping with the unpleasant, but nonpathologized, experiences of life. Before pregnancy, participants endorsed reasons for using cannabis in these 3 categories in similar proportions, with many offering multiple reasons for use. During pregnancy, reasons for use shifted primarily to symptom management. During lactation, reasons returned to resemble those expressed before pregnancy. INTERPRETATION: In this study, we showed that pregnant and lactating people use cannabis for many reasons, particularly for symptom management. Reasons for cannabis use changed across reproductive stages. The dynamic nature of the reasons for use across stages speaks to participant perception of benefits and risks, and perhaps a desire to cast cannabis use during pregnancy as therapeutic because of perceived stigma.

Use of cannabis in urological cancer patients: A review to evaluate risk for cancer development, therapeutic use, and symptom management.

INTRODUCTION: Recent recreational legalization of cannabis has resulted in an increased interest in the therapeutic effects of cannabis use in cancer patients, with reports of its use in symptom management and as a risk factor for cancer development. The objective of this review was to evaluate the literature on the association of cannabis use with the risk of cancer development, symptom management, and therapeutic management in the urological cancer (UC) patient population. METHODS: A systematic search of databases and trial registries for papers published from January 1947 to March 2020 on cannabis, symptom and therapeutic management, and cancer development in UC patients was conducted. After screening of full-text articles, data were extracted for evaluation. Studies were eligible if they were in the clinical setting, included ≥5 UC patients, reported use of any cannabis variant, and were written in English. RESULTS: The search retrieved 2456 abstracts, of which 48 full-text articles were reviewed and 21 included in the review. Low-level evidence suggested a correlation between cannabis use and risk for development of testicular cancer. Some support existed for using cannabis for cancer pain and chemotherapy-induced nausea. There was inadequate evidence to substantiate cannabis use as a therapeutic agent for management of UCs. A lack of high-level evidence and robust methodology of the studies limited evaluation of the findings. CONCLUSIONS: Given the paucity of data on cannabis use for therapeutic purposes in UC, large, prospective trials with adequate followup times to observe the effect of cannabis use on UCs are warranted to improve the evidence base.