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INTRODUCTION: With the purpose of supporting scientific professionals and helping them to better integrate the expertise of users in their work, a users' and relatives' panel (URP) was set up at the National Institute for Excellence in Health and Social Services in Quebec (INESSS), Canada for the social services and mental health directorate. URPs are advisory structures that mobilise the experiential knowledge of people affected by various issues. OBJECTIVES: The objective of this study is to assess from a diverse stakeholders' perceptions: (1) the experience of developing and implementing the URP within the context of an Agencies for Health Technology Assessment and Assessment of Social Services (AHTAASS), (2) the contribution of such a URP, (3) the challenges encountered and (4) the perspectives of improvement for the following years. METHODOLOGY: We conducted a qualitative descriptive evaluation study. Nineteen interviews were conducted: six with URP members and 13 with staff representatives. The documents related to the creation of the panel, the URP minutes summarising the discussions and the reports published during that period were collected and analysed. Following a preliminary round of data analysis, a debriefing meeting was conducted with a few participants to validate the results. RESULTS: The panel was set up as part of the INESSS' desire to better integrate experiential knowledge into its recommendations. Twelve projects were presented to the panel on various themes. The URP enabled health professionals to consider dimensions they had not identified, to better integrate the experiential data collected from users into their work and to develop recommendations that made more sense to users. Panel members and INESSS professionals learned to work together, moving the working methods from consultation to collaboration and even coconstruction. Based on the panel's significant contribution, the INESSS decided to maintain it and to strengthen its place in its system to better integrate the experiential knowledge of users into its work. CONCLUSION: This research illustrates how AHTAASS can set up a URP composed exclusively of users, and how it can contribute and be evaluated. It shows that URPs are structures that value the sharing of experiential knowledge of its members, humanise decision-making and give meaning to the work done by scientific professionals. PATIENT OR PUBLIC CONTRIBUTION: One patient-researcher has contributed to the preparation and writing of this manuscript.
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Qualitative Research , Technology Assessment, Biomedical , Quebec , Humans , Social Work , Interviews as Topic , FamilyABSTRACT
Background: Multiple sclerosis (MS) is an inflammatory and degenerative disease of the central nervous system. More than 90,000 Canadians are affected; a cure is yet to be found. Available treatments to manage the disease course are only partially effective. For many years, persons with MS (PwMS) have used cannabis to relax, to reduce pain and spasticity, or to improve sleep and daily functioning, despite the lack of scientific evidence on the efficacy of specific cannabinoids [i.e., tetrahydrocannabinol (THC) and cannabidiol (CBD)] on these MS symptoms. The purpose of this clinical trial is to assess the effectiveness of different doses of these cannabinoids, alone or combined, on spasticity relief, compared to placebo. Moreover, we aim to determine which treatment is best effective to address other key MS conditions. Methods: A double-blinded, randomized, factorial, placebo-controlled trial will be performed. We intend to include up to 250 PwMS aged over 21 recruited from the Centre hospitalier de l'Université de Montréal MS Clinic. PwMS will be randomly assigned on a 1:1:1:1 ratio to one of the trial arms: THC alone, CBD alone, THC/CBD combination, or placebo, using stratified blocked randomization, with random blocks within each stratum. The primary outcome is a self-assessment of spasticity using the mean Numeric Rating Scale score over 7 days. The main outcome will be the difference in this score at 4 weeks compared to baseline. Secondary outcomes include assessments of spasticity as measured by a clinician, pain, fatigue, sleep, bowel, bladder, and sexual dysfunction, restless legs syndrome, mental health, quality of life, mobility, cognitive functioning, and adverse events. Treatment responders are eligible for a 12-week extension phase, using the same treatment allocation and assessments. Discussion: Previous clinical studies examined the efficacy of cannabis-based medicines in PwMS, mostly using products with 1:1 THC/CBD ratio. The major barrier to effectively use cannabis in real-world clinical settings is the lack of evidence on benefits of specific cannabinoids and information on possible related risks. The CANSEP study will contribute to overcome these limitations and identify the risks and benefits of cannabis-based treatments in PwMS. Clinical trial registration: ClinicalTrials.Gov, NCT05092191.
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BACKGROUND: The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. METHODS: A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients' perceptions of APs' contributions and suggested improvements for accessing AP support. RESULTS: Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients' experiences and highlighted areas for enhancing this service. CONCLUSION: This study highlights, during the care trajectory of people affected by breast cancer, APs' contribution to patients' emotional well-being because they improve, in particular, the management of emotions and communication with health professionals.
In 2019, we initiated the PAROLE-Onco program in Quebec, Canada, to support cancer patients by integrating Accompanying Patients (APs) into the medical team. These individuals, who have personally experienced cancer, join as full team members, sharing their insights with both patients and medical staff. Our study delved into the perceptions of breast cancer patients at two university hospitals regarding APs' involvement in their care trajectory. Through interviews with 14 women of diverse backgrounds and cancer experiences, we found that APs were instrumental in enhancing communication with doctors, facilitating the expression of challenging emotions, and aiding in treatment decisions. Patients valued the inclusion of APs in their care team and expressed gratitude for their support. Nonetheless, some encountered difficulties in reaching out to APs due to a lack of awareness or challenges involved in connecting. Overall, our research underscores the positive impact of involving APs in the care of breast cancer patients, and of enhancing emotional well-being and communication throughout the treatment journey.
Subject(s)
Breast Neoplasms , Qualitative Research , Humans , Female , Breast Neoplasms/psychology , Breast Neoplasms/therapy , Middle Aged , Adult , Aged , Communication , Quebec , Quality of LifeABSTRACT
Background: In a public health crisis such as COVID-19, cancer teams face significant challenges including acute work disruptions, rapid shifts in clinical practice, and burnout. Within this context, it is crucial to explore team functioning from the perspectives of multiple stakeholders. Objective: This quantitative pilot study aimed to 1) measure perceptions of multi-stakeholders on key indicators of team functioning (Team Effectiveness, TE, and Team Relational Coordination, TRC) during COVID-19 and its transition, and 2) document whether patient perceptions of TE/TRC are significantly associated with their cancer care experiences. Methods: A descriptive design with repeated measures was used. Through convenience sampling, participants were recruited from two outpatient cancer clinics at a large university-affiliated hospital, in Montréal, Qc, Canada. Sixty-six participants (ie, 13 healthcare professionals, 40 patients, 6 informal caregivers, and 7 volunteers) completed e-measures at T1 (years 2021-2022) and n = 44 at T2 (year 2023). Results: At T1, participants reported high perceptions of Team Effectiveness (scale 1 to 6) M = 4.47; SD = 0.7 (Mdn = 4.54; IQR: 4.06-5) and Relational Coordination (scale 1 to 5) M = 3.77; SD = 0.77 (Mdn = 3.81; IQR: 3.12-4.38) with no significant differences in perceptions across the four groups. At T2, no significant changes in TE/TRC perceptions were found. At both time points, patient perceptions of TE/TRC were significantly correlated with positive cancer care experiences (Spearman rank correlation rs ranging from 0.69 and 0.83; p < 0.01). Conclusion: To our knowledge, this is the first study documenting perceptions of cancer team functioning amidst the pandemic as reported by multiple stakeholders. Significant relationships between patient perceptions of TE/TRC and their cancer care experiences underscore the importance of including patients' views in team functioning processes. Future work should rely on larger sample sizes to further explore key elements of optimal team functioning.
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Background: Involving family caregivers in direct care in the intensive care unit is increasingly recognized as part of best care practices. However, little is known about the factors that foster this involvement. Objective: The aim of this study was to identify the factors in the literature that promote or limit the involvement of family caregivers in direct care in adult intensive care units. Method: A rapid literature review was conducted in MEDLINE and CINAHL for English-and French-language articles published between 2010 and 2021. Results: 25 articles were selected (n=20 primary studies, n=5 literature syntheses). The results show a diversity of factors that influence the involvement of relatives in direct intensive care units. These factors can be grouped into four categories : relational, informal, clinical, and political. Conclusion: This review identifies the organizational, clinical and human issues relating to the involvement of family caregivers in direct care in order to propose recommendations to facilitate the implementation of this approach in the intensive care units.
Contexte: L'implication des proches aidants dans les soins directs à l'unité des soins intensifs est de plus en plus reconnue comme faisant partie des meilleures pratiques de soins. Toutefois, les facteurs permettant de favoriser cet engagement sont peu connus. Objectifs: Cette étude vise à identifier dans la littérature les facteurs favorables ou limitant l'implication des proches aidants dans les soins directs dans les unités des soins intensifs adultes, et à proposer des recommandations pour favoriser cette implication. Méthode: Une revue rapide des écrits a été réalisée dans MEDLINE et CINAHL afin d'étudier les articles publiés entre 2010 et 2021 en français ou en anglais. Résultats: Au total, 25 articles ont été retenus (n = 20 études primaires, n = 5 synthèses des connaissances). Conclusion: Cette revue permet d'identifier les enjeux organisationnels, cliniques et humains relatifs à l'implication des PA dans les soins directs afin de proposer des recommandations pour faciliter l'implantation de cette approche dans les unités des soins intensifs.
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Caregivers , Critical Care , Family , Humans , Caregivers/psychology , Critical Care/psychology , Critical Care/methods , Critical Care/standards , Family/psychology , Intensive Care Units/organization & administration , Professional-Family RelationsABSTRACT
CONTEXT: Studies generally focus on one type of chronic condition and the effect of medical cannabis (MC) on symptoms; little is known about the perceptions and engagement of patients living with chronic conditions regarding the use of MC. OBJECTIVES: This scoping review aims to explore: (1) what are the dimensions addressed in studies on MC that deal with patients' perceptions of MC? and (2) how have patients been engaged in developing these studies and their methodologies? Through these objectives, we have identified areas for improving future research. METHODS: We searched five databases and applied exclusion criteria to select relevant articles. A thematic analysis approach was used to identify the main themes: (1) reasons to use, to stop using or not to use MC, (2) effects of MC on patients themselves and empowerment, (3) perspective and knowledge about MC, and (4) discussion with relatives and healthcare professionals. RESULTS: Of 53 articles, the main interest when assessing the perceptions of MC is to identify the reasons to use MC (n = 39), while few articles focused on the reasons leading to stop using MC (n = 13). The majority (85%) appraise the effects of MC as perceived by patients. Less than one third assessed patients' sense of empowerment. Articles determining the beliefs surrounding and knowledge of MC (n = 41) generally addressed the concerns about or the comfort level with respect to using MC. Only six articles assessed patients' stereotypes regarding cannabis. Concerns about stigma constituted the main topic while assessing relationships with relatives. Some articles included patients in the research, but none of them had co-created the data collection tool with patients. CONCLUSIONS: Our review outlined that few studies considered chronic diseases as a whole and that few patients are involved in the co-construction of data collection tools as well. There is an evidence gap concerning the results in terms of methodological quality when engaging patients in their design. Future research should evaluate why cannabis' effectiveness varies between patients, and how access affects the decision to use or not to use MC, particularly regarding the relationship between patients and healthcare providers. Future research should consider age and gender while assessing perceptions and should take into consideration the legislation status of cannabis as these factors could in fact shape perception. To reduce stigma and stereotypes about MC users, better quality and accessible information on MC should be disseminated.
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Medical Marijuana , Humans , Medical Marijuana/therapeutic use , Chronic DiseaseABSTRACT
BACKGROUND: Patient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients' perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings. METHODS: An umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary. DISCUSSION: This umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42023421845.
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Patient Reported Outcome Measures , Humans , Systematic Reviews as Topic/methods , Research Design , Surveys and Questionnaires , Delivery of Health CareABSTRACT
BACKGROUND: Liver transplantation (LT) is indicated in patients with severe acute or chronic liver failure for which no other therapy is available. With the increasing number of LTs in recent years, liver centers worldwide must manage their patients according to their clinical situation and the expected waiting time for transplantation. The LT clinic at the Centre hospitalier de l'Université de Montréal (CHUM) is developing a new health care model across the entire continuum of pre-, peri-, and posttransplant care that features patient monitoring by an interdisciplinary team, including an accompanying patient; a digital platform to host a clinical plan; a learning program; and data collection from connected objects. OBJECTIVE: This study aims to (1) evaluate the outcomes following the implementation of a patient platform with connected devices and an accompanying patient, (2) identify implementation barriers and facilitators, (3) describe service outcomes in terms of health outcomes and the rates and nature of contact with the accompanying patient, (4) describe patient outcomes, and (5) assess the intervention's cost-effectiveness. METHODS: Six types of participants will be included in the study: (1) patients who received transplants and reached 1 year after transplantation before September 2023 (historical cohort or control group), (2) patients who will receive an LT between December 2023 and November 2024 (prospective cohort/intervention group), (3) relatives of those patients, (4) accompanying patients who have received an LT and are interested in supporting patients who will receive an LT, (5) health care professionals, and (6) decision makers. To describe the study sample and collect data to achieve all the objectives, a series of validated questionnaires, accompanying patient logbooks, transcripts of interviews and focus groups, and clinical indicators will be collected throughout the study. RESULTS: In total, 5 (steering, education, clinical-technological, nurse prescription, and accompanying patient) working committees have been established for the study. Recruitment of patients is expected to start in November 2023. All questionnaires and technological platforms have been prepared, and the clinicians, stakeholders, and accompanying patient personnel have been recruited. CONCLUSIONS: The implementation of this model in the trajectory of LT recipients at the CHUM may allow for better monitoring and health of patients undergoing transplantation, ultimately reducing the average length of hospital stay and promoting better use of medical resources. In the event of positive results, this model could be transposed to all transplant units at the CHUM and across Quebec (potentially affecting 888 patients per year) but could also be applied more widely to the monitoring of patients with other chronic diseases. The lessons learned from this project will be shared with decision makers and will serve as a model for other initiatives involving accompanying patients, connected objects, or digital platforms. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/54440.
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BACKGROUND: Dermatology consultations in Québec, Canada, face accessibility challenges, with most dermatologists concentrated in urban areas. Teledermatology, offering remote diagnosis and treatment, holds promise in overcoming these limitations. However, concerns regarding patient-doctor relationships and logistical issues exist. OBJECTIVES: This article aims to introduce a dermatology patient learning pathway (PLP) developed by the Centre of Excellence on Partnership with Patients and the Public (CEPPP), focusing on knowledge, abilities, and skills mobilized by patients and their loved ones at key moments of the life course with an illness, as well as emerging educational needs. METHODS: The PLP development was co-developed with dermatology patient and caregiver partners, stakeholders, and the CEPPP team. The process encompassed stakeholder engagement, exploration, recruitment of patient and caregiver partners, co-development of the PLP draft, and validation through consensus building. RESULTS: The PLP methodology led to the creation of 44 learning objectives, comprising a total of 107 subobjectives. These objectives were organized into 8 phases of the patient life course with a dermatological condition: (1) prevention and predisposition; (2) discovery, self-examination, or observation of a change; (3) first consultation; (4) wandering; (5) consultation with a dermatologist; (6) diagnosis; (7) treatments; and (8) living with it. CONCLUSIONS: The dermatology PLP serves as a resource outlining patient competency across different stages of managing a dermatological condition throughout their life course. In the context of teledermatology, the PLP might facilitate patient and caregiver engagement by helping select appropriate information and tools to support active participation in care.
Subject(s)
Dermatology , Skin Diseases , Telemedicine , Humans , Skin Diseases/diagnosis , Skin Diseases/therapy , Dermatology/education , Quebec , Physician-Patient Relations , Patient Education as Topic , Caregivers/educationABSTRACT
CONTEXT: Working with women to best meet their needs has always been central to midwifery in Quebec, Canada. The creation of birthing centres at the end of the 1990s consolidated this desire to prioritize women's involvement in perinatal care and was intended to encourage the establishment of a care and services partnership between care providers and users. The aim of this pilot study is to evaluate the perceptions of clients, midwives and birth assistants of the way in which women are involved in partnership working in Quebec birthing centres. METHODS: A single qualitative case and pilot study was conducted with midwives (n = 5), birth assistants (n = 4), a manager (n = 1), clients (n = 5) and members of the users' committee (n = 2) at a birthing centre in Quebec, Canada in July and August 2023. The partnership was evaluated using the dimensions of a validated CADICEE questionnaire. RESULTS: The women and professionals stressed that the relationship was established in a climate of trust. The caregivers also attached importance to autonomy, information sharing and decision-making, adaptation to context, empathy and recognition of the couple's expertise. The women confirmed that they establish a relationship of trust with the professionals when the latter show empathy and that they adapt the follow-up to their knowledge and life context. Key factors in establishing this kind of care relationship are the time given, a de-medicalized environment, the comprehensive care received, and professionals who are well-informed about the partnership. In addition, the birthing centre has a users' committee that can put forward ideas but has no decision-making powers. CONCLUSIONS: Both the women and the professionals at the birthing centre appear to be working in partnership. However, at the organizational level, the women are not involved in decision-making. A study of all birthing centres in Quebec would provide a more comprehensive picture of the situation.
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Birthing Centers , Midwifery , Pregnancy , Infant, Newborn , Humans , Female , Quebec , Pilot Projects , Midwifery/methods , CanadaABSTRACT
This article is an overview and reflection of the findings of an evaluative study conducted on a program called "Techno-Covid Partnership" (TCP) implemented in April 2020 at the Centre Hospitalier de l'Université de Montréal (CHUM) in Montreal, Canada. In the context of the COVID-19 pandemic, the CHUM decided in April 2020 to implement telehealth, virtual care, and telemonitoring platforms and technologies to maintain access to care and reduce the risks of contamination and spread of COVID-19 as well as to protect users of health services and health professionals. Three technological platforms for telehealth and remote care and monitoring have been developed, implemented, and evaluated in real-time within the framework of the TCP program. A cross-sectional study was carried out in which a questionnaire was used and administered to users of telehealth platforms including patients and healthcare professionals. The methods and results of the study have been published previously published. In the completion of the two articles published in this context, in this paper, we briefly recall the context of the study and the method performed. The main focus of the paper is on presenting a critical overview and reflection on the major findings of our evaluation of the use of telehealth platforms from the point of view of patients and health professionals and discuss certain paradoxes i.e., the advantages, challenges, recommendations, and other perspectives that emerged in this study.
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BACKGROUND: Artificial intelligence (AI)-based chatbots could help address some of the challenges patients face in acquiring information essential to their self-health management, including unreliable sources and overburdened health care professionals. Research to ensure the proper design, implementation, and uptake of chatbots is imperative. Inclusive digital health research and responsible AI integration into health care require active and sustained patient and stakeholder engagement, yet corresponding activities and guidance are limited for this purpose. OBJECTIVE: In response, this manuscript presents a master protocol for the development, testing, and implementation of a chatbot family in partnership with stakeholders. This protocol aims to help efficiently translate an initial chatbot intervention (MARVIN) to multiple health domains and populations. METHODS: The MARVIN chatbots study has an adaptive platform trial design consisting of multiple parallel individual chatbot substudies with four common objectives: (1) co-construct a tailored AI chatbot for a specific health care setting, (2) assess its usability with a small sample of participants, (3) measure implementation outcomes (usability, acceptability, appropriateness, adoption, and fidelity) within a large sample, and (4) evaluate the impact of patient and stakeholder partnerships on chatbot development. For objective 1, a needs assessment will be conducted within the setting, involving four 2-hour focus groups with 5 participants each. Then, a co-construction design committee will be formed with patient partners, health care professionals, and researchers who will participate in 6 workshops for chatbot development, testing, and improvement. For objective 2, a total of 30 participants will interact with the prototype for 3 weeks and assess its usability through a survey and 3 focus groups. Positive usability outcomes will lead to the initiation of objective 3, whereby the public will be able to access the chatbot for a 12-month real-world implementation study using web-based questionnaires to measure usability, acceptability, and appropriateness for 150 participants and meta-use data to inform adoption and fidelity. After each objective, for objective 4, focus groups will be conducted with the design committee to better understand their perspectives on the engagement process. RESULTS: From July 2022 to October 2023, this master protocol led to four substudies conducted at the McGill University Health Centre or the Centre hospitalier de l'Université de Montréal (both in Montreal, Quebec, Canada): (1) MARVIN for HIV (large-scale implementation expected in mid-2024), (2) MARVIN-Pharma for community pharmacists providing HIV care (usability study planned for mid-2024), (3) MARVINA for breast cancer, and (4) MARVIN-CHAMP for pediatric infectious conditions (both in preparation, with development to begin in early 2024). CONCLUSIONS: This master protocol offers an approach to chatbot development in partnership with patients and health care professionals that includes a comprehensive assessment of implementation outcomes. It also contributes to best practice recommendations for patient and stakeholder engagement in digital health research. TRIAL REGISTRATION: ClinicalTrials.gov NCT05789901; https://classic.clinicaltrials.gov/ct2/show/NCT05789901. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/54668.
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PURPOSE: To document the process by which healthcare professionals (HCPs) support people living with and beyond hematological cancer and detail how they learned from their personal and clinical experience. METHOD: Using a narrative approach, we conducted nine semi-structured interviews with HCPs, including nurses, from a specialized care centre who support patients with hematological cancer. Interviews aimed to capture experiential learning gained from their practice. We performed a hybrid inductive/deductive content analysis on data using a framework based on sociological and educational models of experiential learning. RESULTS: Among healthcare professionals, analysis revealed the need to provide care and support that is 'humane' and adapted to each patient. Learning to provide this type of care proved to be challenging. Over the course of their clinical experience, healthcare professionals learned to adapt the support they provided by straddling a boundary between sympathy and empathy. Learning outcomes were associated with personal-professional development among participants. CONCLUSION: Our findings bring to light an overlooked facet of patient support in the context of cancer care, which is the acquisition of the soft skills required to deliver humanistic care and support. This learning process requires time and involves navigating between the realms of sympathy and empathy. Experiential learning is intertwined with the complexity of the often long-term patient-professional relationship that characterizes hemato-oncology. This unique relationship offers rewards for healthcare professionals on both personal and professional fronts.
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Health Personnel , Hematologic Neoplasms , Humans , Medical Oncology , Hematologic Neoplasms/therapy , Delivery of Health Care , Chronic DiseaseABSTRACT
OBJECTIVES: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients' experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs' perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. METHODS: A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs' integration into clinical teams were analyzed in terms of governance, culture, resources and tools. RESULTS: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs' activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs' added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. CONCLUSION: Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.
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Health Personnel , Neoplasms , Humans , Focus Groups , Qualitative Research , Medical Oncology , Neoplasms/therapyABSTRACT
PURPOSE: COVID Alert is an exposure notification app deployed in Canada to help limit the spread of COVID-19. METHODS: This was a cross-sectional survey conducted in Québec, Canada. The questionnaire was codesigned with patients and members of the public. It assessed the perspectives of teenagers aged 15-17 years old. RESULTS: Among 237 respondents, 27% had downloaded the COVID Alert app. Friends and relatives constituted the largest influence for app download. The most frequently reported concerns included threats to privacy, confidentiality, cybersecurity, and geolocalization. Among nonusers, having more social contacts and evidence demonstrating effectiveness would have motivated app download. Individual factors associated with download included high concern about the pandemic and high self-perceived app knowledge. DISCUSSION: Future digital health interventions should engage teenagers in developing tools that promote social acceptance and responsible use in this group.
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COVID-19 , Mobile Applications , Humans , Adolescent , Cross-Sectional Studies , Disease Notification , CanadaABSTRACT
Background: Amidst the acceleration of digital health deployment in the province of Québec, the need to clarify the role of patients and caregivers was deemed essential to guide the deployment of telehealth strategies. A patient learning pathway (PLP) approach to patient and caregiver engagement was developed, containing knowledge, abilities, and skills mobilized by patients and caregivers at key moments of the life course with an illness, as well as emerging educational needs. Objective: The objective of the current paper is to present the innovative PLP approach to patient and caregiver engagement in telehealth by applying it to three medical specialties within the context of the Québec healthcare system: dermatology, oncology, and mental health/psychiatry. Methods: The PLP methodology is constituted of five chronological phases: 1) identification and engagement of main stakeholders; 2) exploration; 3) recruitment of patient and caregiver partners; 4) co-development of PLP first draft; and 5) validation and consensus building regarding competencies. Results: Three PLPs (dermatology, oncology, and mental health/psychiatry) have already been mapped using this participatory approach, showing that the proposed PLP approach to patient and caregiver engagement in telehealth is feasible. Conclusions: Mapping patient and caregiver competencies organized throughout patients' life course with an illness can lead to a highly operationalizable tool, which relevant stakeholders can use in a way that promotes patient self-management, shared decision-making, and empowerment. Innovation: The five-step PLP methodology developed proposes an innovative and structured approach to partnership with patients and caregivers in telehealth by outlining their roles throughout their life course with an illness.
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OBJECTIVES: This study aims to describe the use of patient partnership, as defined by the Montreal Model, in emergency departments (EDs) in France and report the perception of patient partnership from both the practitioner and patient perspectives. METHODS: This cross-sectional study was conducted between July 2020 and October 2020. First, a survey was sent to 146 heads of EDs in both teaching hospitals and non-teaching hospitals in France to assess the current practices in terms of patient partnership in service organization, research, and teaching. The perceived barriers and facilitators of the implementation of such an approach were also recorded. Then, semi-structured telephone interviews were carried out with patients involved in a service re-organization project. RESULTS: A total of 48 answers (response rate 32.9%) to the survey were received; 33.3% of respondents involved patients in projects relating to service re-organization, 20.8% involved patients in teaching projects, and 4.2% in research projects. Overall, 60.4% of the respondents were willing to involve patients in re-organization or teaching projects. The main barriers mentioned for establishing patient partnership were difficulties regarding patient recruitment and lack of time. The main advantages mentioned were the improvement in patient/caregiver relationship and new ideas to improve healthcare. When interviewed, patients mentioned the desire to improve healthcare and the necessity to involve people with different profiles and backgrounds. A too important personal commitment was the most frequently raised barrier to their engagement. All the patients recognized their positive role, and more generally, the positive role of patient engagement in service re-organization. CONCLUSION: Although this preliminary study indicates a rather positive perception of patient partnership among heads of EDs in France and partner patients, this approach is still not widely applied in practice.
Subject(s)
Emergency Service, Hospital , Health Facilities , Humans , Cross-Sectional Studies , France , Hospitals, TeachingABSTRACT
BACKGROUND: Centre hospitalier de l'Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. METHODS: An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. RESULTS: Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients' ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). CONCLUSIONS: This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment.
Subject(s)
Breast Neoplasms , Psychological Distress , Humans , Female , Cross-Sectional Studies , Stress, Psychological/psychology , Self Efficacy , Adaptation, Psychological , Breast Neoplasms/therapy , Breast Neoplasms/psychology , Surveys and QuestionnairesABSTRACT
BACKGROUND: The number of elective outpatient surgeries in Canada has increased markedly in the last 10 years. However, unanticipated cancellations on the day of surgery and adverse postoperative events are frequent. Modern technologies have been shown to be of great help in the medical field in improving patient care. Thus, it is likely that dedicated technologies could also significantly improve surgical outpatients' pathways. Therefore, the department of anesthesiology at the University of Montreal Medical Center, in collaboration with LeoMed, a telemedicine platform, has developed a telehealth solution to offer more efficient perioperative support and follow-up for patients undergoing ambulatory surgery. OBJECTIVE: The objective is to evaluate the medicoeconomic benefit of a dedicated perioperative telehealth platform for patients undergoing day surgery. Our hypothesis is that this dedicated telecare solution will allow more efficient patient care, which will reduce all types of medical costs related to day surgery pathways. METHODS: This study is a single-center, single-blinded, 2-group randomized controlled trial. One thousand patients aged over 18 years with internet access who are scheduled to undergo ambulatory surgery will be enrolled and randomized either to follow a perioperative path that includes a patient-tailored perioperative digital app via the LeoMed telecare platform for 1 month or to follow the standard of care, which does not offer personalized digital support. The primary outcome will be to evaluate the cost-effectiveness of the telecare platform, assessing direct costs from factors such as unanticipated cancellations on the day of surgery due to preoperative instructions not being followed, calls to the local health information line, calls to the provincial health information line, emergency department consultations, unplanned readmissions, or medical visits for problems related to the surgical procedure within the first 30 days after the intervention. The secondary outcome will be to evaluate cost utility using a questionnaire assessing quality-adjusted life years. A blinded independent research team will analyze outcomes. All data will be analyzed according to the intention-to-treat principle. A sample size of 500 subjects in each group was calculated to detect a 21% reduction in postoperative complications with a power of 90%. This study has been approved by the ethics board of Centre hospitalier de l'Université de Montréal (University of Montreal Health Centre). No employee of LeoMed was involved in the study conception, and none will be involved in either data collection or analysis. RESULTS: Results of this trial will be useful to determine the economic benefit of a telecare platform specifically developed for surgical outpatient pathways. CONCLUSIONS: We believe that the deployment of a dedicated perioperative telehealth app will lead to better patient care and fewer postoperative complications, which will lower all types of costs related to surgical outpatient care. TRIAL REGISTRATION: ClinicalTrials.gov NCT04948632; https://ClinicalTrials.gov/ct2/show/NCT04948632. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/44006.
ABSTRACT
INTRODUCTION: Attachment to a primary care provider is an important component of primary care as it facilitates access. In Québec, Canada, attachment to a family physician is a concern. To address unattached patients' barriers to accessing primary care, the Ministry of Health and Social Services mandated Québec's 18 administrative regions to implement single points of access for unattached patients (Guichets d'accès première ligne (GAPs)) that aim to better orient patients towards the most appropriate services to meet their needs. The objectives of this study are to (1) analyse the implementation of GAPs, (2) measure the effects of GAPs on performance indicators and (3) assess unattached patients' experiences of navigation, access and service utilisation. METHODS AND ANALYSIS: A longitudinal mixed-methods case study design will be conducted. Objective 1. Implementation will be analysed through semistructured interviews with key stakeholders, observations of key meetings and document analysis. Objective 2. GAP effects on indicators will be measured using performance dashboards produced using clinical and administrative data. Objective 3. Unattached patients' experiences will be assessed using a self-administered electronic questionnaire. Findings for each case will be interpreted and presented using a joint display, a visual tool for integrating qualitative and quantitative data. Intercase analyses will be conducted highlighting the similarities and differences across cases. ETHICS AND DISSEMINATION: This study is funded by the Canadian Institutes of Health Research (# 475314) and the Fonds de Soutien à l'innovation en santé et en services sociaux (# 5-2-01) and was approved by the CISSS de la Montérégie-Centre Ethics Committee (MP-04-2023-716).