Browsing by Author "Santana, Maria"
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Item Open Access An Economic Evaluation of a Novel Electronic Discharge Communication Tool(2017) Sevick, Laura; Clement, Fiona; Ghali, William; Santana, MariaThe transition from acute-care hospitalization to community-based care is a vulnerable period in healthcare delivery due to potential for post-discharge adverse events. This vulnerability has been attributed to the miscommunication between acute and community-based physicians, as current systems do not control for legibility, completeness or timeliness of the discharge summary. One potential approach to bridging this communication gap is the use of electronic discharge communication tools, which can be designed to ensure the consistent and timely transfer of information. Given the limited healthcare budget, the costs and benefits of these tools should be considered prior to large scale implementation. Thus, the goal of this thesis is to establish the cost-effectiveness of electronic discharge communication tools. To achieve this, a systematic review of published literature was conducted (Chapter 2), a prospective economic evaluation of a novel electronic discharge communication tool was completed (Chapter 3), and policy options/considerations were presented (Chapter 4).Item Embargo An Examination of Patients’ Experiences with Navigation Services in Alberta’s Healthcare System(2024-06-20) Rabi, Sarah; Tang, Karen; Santana, Maria; McBrien, Kerry; Dimitropoulos, GinaBackground: The concept of patient navigation (PN) was first envisioned to assist marginalized cancer patients access appropriate and timely healthcare resources. While this understanding of PN may still hold for a subgroup of programs today, the expansion of PN over the past 30 years has resulted in a diverse set of interventions with distinct care settings, patient eligibility criteria, navigator training, and program objectives. Noting this, our study sought to better understand how PN has evolved by gathering information on patients’ perspectives and interactions with PN programs across Alberta. Our objectives were to (i) explore patients’ current experiences with PN programs, and (ii) identify the features of PN felt to be of particular value to patients. Methods: To address these objectives, we conducted an interpretive descriptive study to collate the experiences of adult patients with longitudinal exposure to Albertan PN programs (involvement for greater than or equal to one month). Participant recruitment occurred via key informant sampling with navigators across Alberta. One-on-one semi-structured interviews were conducted to explore patient experiences with PN and their understanding of it as a broader concept. Inductive thematic analysis and interpretive exercises were subsequently performed to construct a coherent message from the data. Continued collaboration with two patient partners was maintained throughout the study to ensure responsiveness to patient priorities. Results: This study involved 23 participants with experience using nurse navigators, transition navigators, and lay community health navigators. Irrespective of navigation type, the participants’ stories were tethered by their navigators’ promotion of seamless and personalized care, as well as their ability to seemingly humanize the healthcare system. This was accomplished through a set of participant-identified navigator characteristics, including approachability, accessibility, and comprehensive systems knowledge. While the identified functions and characteristics of navigators were consistent across participants, how these components were operationalized varied based on the program’s setting and the particular needs of each patient. Conclusion: As a patient-centred intervention, understanding patients’ experiences and valuations of PN is critical to distilling the essence of the intervention. This research directly addresses ongoing knowledge gaps surrounding contemporary understandings of PN, particularly from patients’ perspectives.Item Open Access An exploration of COVID-19 vaccination models for newcomer refugees and immigrants in Calgary, Canada(2024-03-12) Aghajafari, Fariba; Wall, Laurent; Weightman, Amanda M.; Ness, Alyssa; Lake, Deidre; Anupindi, Krishna; Moorthi, Gayatri; Kuk, Bryan; Santana, Maria; Coakley, AnnaleeAbstract Background The World Health Organization stresses the need for tailored COVID-19 models of vaccination to meet the needs of diverse populations and ultimately reach high rates of vaccination. However, little evidence exists on how COVID-19 models of vaccination operated in the novel context of the pandemic, how vulnerable populations, such as refugees, experience COVID-19 vaccination systems in high-income countries, and what lessons may be learned from vaccination efforts with vulnerable populations. To address this gap, this study explored COVID-19 vaccine delivery models available to newcomer refugees and immigrants, and refugee experiences across different COVID-19 vaccine delivery models in Calgary, Canada, and surrounding area in 2021 and 2022, to understand the barriers, strengths, and strategies of models to support access to COVID-19 vaccination for newcomer refugees and immigrants. Methods Researchers conducted structured interviews with Government Assisted Refugees (n = 39), and semi-structured interviews with Privately Sponsored Refugees (n = 6), private refugee sponsors (n = 3), and stakeholders involved in vaccination systems (n = 13) in 2022. Thematic analysis was conducted to draw out themes related to barriers, strengths, and strategies of vaccine delivery models and the intersections with patient experiences. Results Newcomer refugee and immigrant focused vaccination models and strategies were explored. They demonstrated how partnerships between organizations, multi-pronged approaches, and culturally responsive services were crucial to navigate ongoing and emergent factors, such as vaccine hesitancy, mandates, and other determinants of under-vaccination. Many vaccination models presented through interviews were not specific to refugees and included immigrants, temporary residents, ethnocultural community members, and other vulnerable populations in their design. Conclusions Increasing COVID-19 vaccine uptake for newcomer refugees and immigrants, is complex and requires trust, ongoing information provision, and local partnerships to address ongoing and emerging factors. Three key policy implications were drawn. First, findings demonstrated the need for flexible funding to offer outreach, translation, cultural interpretation, and to meet the basic needs of patients prior to engaging in vaccinations. Second, the research showed that embedding culturally responsive strategies within services ensures community needs are met. Finally, collaborating with partners that reflect the diverse needs of communities is crucial for the success of any health efforts serving newcomers.Item Open Access Co-designing the Assessment of Multimedia Resources to Assist Guardian Understanding of Surgical Consent Prior to Spinal Surgery in Pediatric Patients - a Quasi-Experimental Study(2024-01-24) Rosa Filezio, Marina; Santana, Maria; Sharma, Nishan; Thull-Freedman, JenniferInformed consent is mandatory prior to any surgical procedure in medical practice. Consent requires voluntary agreement, the capacity to consent, and proper prior information. Literature shows that traditional methods of informing patients and guardians may not provide enough understanding of all risk, benefits and expectations associated with scoliosis surgery in pediatric patients. Scoliosis is the most common spinal disorder in pediatric patients. Treatment depends on curvature size and skeletal maturity, and surgery is reserved for curvatures greater than 45 degrees. This study aims to assess the impact of introducing a co-developed multimedia tool to improve guardians’ understanding of the surgical discussion and informed consent prior to PSIF. The primary objective is to measure the effect of this intervention using the results from test and post-test. Secondary objective includes observing if this tool improves guardians’ perceived understanding. It is hypothesized that the multimedia tool will improve comprehension and perceived understanding when compared to traditional methods. Specific aims involved describing, quantifying, and comparing questionnaire results in three distinct educational times during the pre-operative process, as well as results from the patient engagement evaluation tool. A quasi-experimental, repeated measures, multi methods approach was applied to analyze the results of a multiple-choice questionnaire between two groups (Pathway A and Pathway B), about the pre-operative surgical discussion process and content. Quantitative and qualitative data were obtained from the public and patient engagement evaluation tool to assess the patient engagement strategy implemented for the co-development of the educational video tool. Seventeen participants were included in this study, eight assigned to Pathway A and nine to Pathway B. No significant difference was seen between results from Pathway A and Pathway B. However, the effect of knowledge acquisition over time was significant, indicating a substantial temporal progression on the outcome. The results demonstrate promising outcomes regarding knowledge acquisition over time when introducing a secondary information delivery method to the current consent process. Patient engagement evaluation tool findings display positive results reinforcing the efforts to ensure the CIHR guiding principles during the creation of the educational video.Item Open Access Developing a Canadian evaluation framework for patient and public engagement in research: study protocol(2021-02-25) L’Espérance, Audrey; O’Brien, Nadia; Grégoire, Alexandre; Abelson, Julia; Canfield, Carolyn; Del Grande, Claudio; Dogba, Maman J.; Fancott, Carol; Levasseur, Mary A.; Loignon, Christine; Majnemer, Annette; Pomey, Marie-Pascale; Rasiah, Jananee; Salsberg, Jon; Santana, Maria; Tremblay, Marie-Claude; Urquhart, Robin; Boivin, AntoineAbstract Background Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. Objective This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations. Methods Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. Discussion The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.Item Open Access East African Immigrant Women with Gestational Diabetes Mellitus: A Mixed-methods Evaluation of the Care Experience in a Vulnerable Population(2016) Siad, Fartoon; Rabi, Doreen; Santana, Maria; Butalia, SoniaBackground: Low rates of post-partum diabetes screening continues to impact the health of immigrant women diagnosed with gestational diabetes and high-risk for the development of future diabetes. The objectives of this study were to explore the diabetes resources available in Calgary and the care experiences of immigrant women. Methods: An online survey was distributed to six health clinics and community organizations involved in the provision of diabetes services to immigrant women. Ten East African women with gestational diabetes were identified and interviewed. Interviews were transcribed verbatim and thematically analyzed. Conclusion: The findings of this thesis suggest that current approaches to diabetes education and care in East African women with GDM lack cultural relevance to this high-risk community and do not emphasize the need for ongoing post-partum screening. Diabetes prevention using innovative community-level interventions such as patient navigators and care that engages and empowers women as partners in health are needed. Key words: Gestational diabetes, immigrant women, East Africa, health education, care experience, diabetes, post-partum screening.Item Open Access Educating patients about patient-reported outcomes—are we there yet?(2024-09-30) Unni, Elizabeth; van Muilekom, Maud M.; Absolom, Kate; Bajgain, Bishnu; Haverman, Lotte; Santana, MariaAbstract Background Using Patient Reported Outcome Measures (PROMs) in clinical settings can improve patient outcomes by enhancing communication between patient and provider. There has been significant improvements in the development of PROMs, their implementation in routine patient clinical care, training physicians and other healthcare providers to interpret the PROMs results to identify any issues reported by the patient, and to use the PROMs results to provide or modify the treatment. Main body Despite the increased use of PROMs, the lack of PROM completion by patients is a major concern in the optimal use of PROMs. Studies have shown several reasons why patients do not complete PROMs and one of the reasons is their lack of understanding of the significance of PROMs and their utility in their clinical care. While examining the various strategies that can be used to improve the uptake of PROM completion by patients, educating patients about the use of PROMs has been recommended. There is less evidence on how patients are trained or educated about PROMs. It may also be possible that the patient education strategies are not reported in the publications. This brings up the question of evaluation of the educational strategies used. Conclusion Our symposium at the 2023 ISOQOL conference brought together a range of experiences and learning around patient-centered PROMs educational activities used in the Netherlands, Canada, and the UK. This commentary is aimed to describe the lay of the land about educational activities around the use of PROMs in clinical care for patients, recognizing the gaps, and posing questions to be considered by the research and clinical community.Item Open Access Patient-Reported Outcome Measures to Inform Measurement-based Care for Youth Living with Mental Health Concerns: A mixed method study(2024-03-19) Thapa Bajgain, Kalpana; Santana, Maria; Zwicker, Jennifer; Aghajafari, Fariba; Tang, KarenMeasurement-based care (MBC) describes the process of routinely using outcome measurement to guide treatment decisions supporting Patient-centered Care (PCC). Patient-reported Outcome Measures (PROMs) play a vital role in MBC supporting the delivery of PCC. Despite the evidence on the benefits of using PROMs in clinical care, some barriers hinder the selection of the PROMs, such as the different age groups for youth and poor consensus on which measurements are best practices and most appropriate for this population. This mixed-methods, multi-phased study addresses some of these gaps by focusing on identifying, selecting, and prioritizing the PROMs to be implemented in the clinical care of youth with depression and/or anxiety to inform the MBC program at the Summit Center. The first phase of this thesis work includes three stages: 1) a systematic review to identify, evaluate, and synthesize the global evidence on the use of PROMs in youth mental health clinical care 2) In the second stage, we create and combine a database of PROMs from different sources. In the third step, we selected the top 10 PROMs to prioritize in Phase 2. The selected top 10 PROMs were: Beck Depression Inventory (BDI), Child Behavioral Checklist (CBC), Child Health Questionnaire (CHQ), KIDSCREEN 10, Pediatric Quality of Life Inventory (PedsQL), Revised Children's Anxiety and Depression Scale (RCAD 25), Spence Children’s Anxiety Scale (SCAC), Screen for Child Anxiety Related Disorder (SCARED), Strength and Difficulties Questionnaires (SDQ), and The Young Person’s Core (YP-CORE). Then, in Phase 2, we conducted the Nominal Group Technique (NGT) with youth living with depression and anxiety and their family caregivers to prioritize these top 10 PROMs. The top PROMs ranked by youth were RCAD 25, BDI, YP-CORE, SCAS, SCARED, CBCL, PedsQl, SDQ, KIDSCREEN 10, and CHQ, while families/caregivers top-ranked RCAD 25, SCARED, YP-CORE, KIDSCREEN 10, SCAS, CBCL, PedsQl, SDQ, BDI, and CHQ. In summary, the findings of this study informed the MBC program at the Summit Center and presented an excellent opportunity to leverage the findings of this study to support the scale-up implementation of PROMs in the clinical care for youth living with mental health in Alberta.Item Open Access Patient-reported outcome measures used to improve youth mental health services: a systematic review(2023-02-14) Thapa Bajgain, Kalpana; Amarbayan, Mungunzul; Wittevrongel, Krystle; McCabe, Erin; Naqvi, Syeda F.; Tang, Karen; Aghajafari, Fariba; Zwicker, Jennifer D.; Santana, MariaAbstract Background Patient-reported outcome measures (PROMs) are standardized and validated self-administered questionnaires that assess whether healthcare interventions and practices improve patients’ health and quality of life. PROMs are commonly implemented in children and youth mental health services, as they increasingly emphasize patient-centered care. The objective of this study was to identify and describe the PROMs that are currently in use with children and youth living with mental health conditions (MHCs). Methods Three databases (MEDLINE, EMBASE, and PsycINFO) were systematically searched that used PROMs with children and youth < 18 years of age living with at least one diagnosed MHC. All methods were noted according to Preferred Reporting Items for Systematic reviews and Meta-Analysis. Four independent reviewers extracted data, which included study characteristics (country, year), setting, the type of MHC under investigation, how the PROMs were used, type of respondent, number of items, domain descriptors, and the psychometric properties. Results Of the 5004 articles returned by the electronic search, 34 full-texts were included in this review. This review identified both generic and disease-specific PROMs, and of the 28 measures identified, 13 were generic, two were generic preference-based, and 13 were disease-specific. Conclusion This review shows there is a diverse array of PROMs used in children and youth living with MHCs. Integrating PROMs into the routine clinical care of youth living with MHCs could improve the mental health of youth. Further research on how relevant these PROMs are children and youth with mental health conditions will help establish more uniformity in the use of PROMs for this population.Item Open Access A qualitative analysis of a consensus process to develop quality indicators of injury care(BioMed Central, 2013-04-18) Bobrovitz, Niklas; Parrilla, Julia S; Santana, Maria; Straus, Sharon E; Stelfox, Henry TItem Open Access Re-Purposing the Ordering of Routine Laboratory Tests in Hospitalized Medical Patients (RePORT): protocol for a multicenter stepped-wedge cluster randomised trial to evaluate the impact of a multicomponent intervention bundle to reduce laboratory test over-utilization(2024-07-02) Ambasta, Anshula; Holroyd-Leduc, Jayna M.; Pokharel, Surakshya; Mathura, Pamela; Shih, Andrew W.; Stelfox, Henry T.; Ma, Irene; Harrison, Mark; Manns, Braden; Faris, Peter; Williamson, Tyler; Shukalek, Caley; Santana, Maria; Omodon, Onyebuchi; McCaughey, Deirdre; Kassam, Narmin; Naugler, ChrisAbstract Background Laboratory test overuse in hospitals is a form of healthcare waste that also harms patients. Developing and evaluating interventions to reduce this form of healthcare waste is critical. We detail the protocol for our study which aims to implement and evaluate the impact of an evidence-based, multicomponent intervention bundle on repetitive use of routine laboratory testing in hospitalized medical patients across adult hospitals in the province of British Columbia, Canada. Methods We have designed a stepped-wedge cluster randomized trial to assess the impact of a multicomponent intervention bundle across 16 hospitals in the province of British Columbia in Canada. We will use the Knowledge to Action cycle to guide implementation and the RE-AIM framework to guide evaluation of the intervention bundle. The primary outcome will be the number of routine laboratory tests ordered per patient-day in the intervention versus control periods. Secondary outcome measures will assess implementation fidelity, number of all common laboratory tests used, impact on healthcare costs, and safety outcomes. The study will include patients admitted to adult medical wards (internal medicine or family medicine) and healthcare providers working in these wards within the participating hospitals. After a baseline period of 24 weeks, we will conduct a 16-week pilot at one hospital site. A new cluster (containing approximately 2–3 hospitals) will receive the intervention every 12 weeks. We will evaluate the sustainability of implementation at 24 weeks post implementation of the final cluster. Using intention to treat, we will use generalized linear mixed models for analysis to evaluate the impact of the intervention on outcomes. Discussion The study builds upon a multicomponent intervention bundle that has previously demonstrated effectiveness. The elements of the intervention bundle are easily adaptable to other settings, facilitating future adoption in wider contexts. The study outputs are expected to have a positive impact as they will reduce usage of repetitive laboratory tests and provide empirically supported measures and tools for accomplishing this work. Trial Registration This study was prospectively registered on April 8, 2024, via ClinicalTrials.gov Protocols Registration and Results System (NCT06359587). https://classic.clinicaltrials.gov/ct2/show/NCT06359587?term=NCT06359587&recrs=ab&draw=2&rank=1Item Open Access Study protocol for Attachment & Child Health (ATTACHTM) program: promoting vulnerable Children’s health at scale(2022-08-19) Anis, Lubna; Letourneau, Nicole; Ross, Kharah M.; Hart, Martha; Graham, Ian; Lalonde, Simone; Varro, Suzanna; Baldwin, Alanna; Soulsby, Angela; Majnemer, Annette; Donnelly, Carlene; Piotrowski, Caroline; Collier, Carrie; Lindeman, Cliff; Goldowitz, Dan; Isaac, Dawn; Thomson, Denise; Serré, Diane; Citro, Elisabeth; Zimmermann, Gabrielle; Pliszka, Harold; Mann, Jackie; Baumann, Janine; Piekarski, Joanna; Dalton, Jo-Anne; Johnson-Green, Joy; Wood, Karen; Bruce, Marcia; Santana, Maria; Mayer, Matt; Gould, Meghan; Kobor, Michael; Flowers, Michelle; Haywood, Michelle; Koerner, Michelle; Parker, Nancy; Muhajarine, Nazeem; Fairie, Paul; Chrishti, Rabea; Perry, Robert; Merrill, Sarah; Pociuk, Shellie; StephanieTaylor; Cole, Steve; Murphy, Tim; Marchment, Tmira; Xavier, Virginia; Shajani, Zahra; West, ZoeAbstract Background Children’s exposure to toxic stress (e.g., parental depression, violence, poverty) predicts developmental and physical health problems resulting in health care system burden. Supporting parents to develop parenting skills can buffer the effects of toxic stress, leading to healthier outcomes for those children. Parenting interventions that focus on promoting parental reflective function (RF), i.e., parents’ capacity for insight into their child’s and their own thoughts, feelings, and mental states, may understand help reduce societal health inequities stemming from childhood stress exposures. The Attachment and Child Health (ATTACHTM) program has been implemented and tested in seven rapid-cycling pilot studies (n = 64) and found to significantly improve parents’ RF in the domains of attachment, parenting quality, immune function, and children’s cognitive and motor development. The purpose of the study is to conduct an effectiveness-implementation hybrid (EIH) Type II study of ATTACHTM to assess its impacts in naturalistic, real-world settings delivered by community agencies rather than researchers under more controlled conditions. Methods The study is comprised of a quantitative pre/post-test quasi-experimental evaluation of the ATTACHTM program, and a qualitative examination of implementation feasibility using thematic analysis via Normalization Process Theory (NPT). We will work with 100 families and their children (birth to 36-months-old). Study outcomes include: the Parent Child Interaction Teaching Scale to assess parent-child interaction; the Parental Reflective Function and Reflective Function Questionnaires to assess RF; and the Ages and Stages Questionnaire – 3rd edition to examine child development, all administered pre-, post-, and 3-month-delayed post-assessment. Blood samples will be collected pre- and post- assessment to assess immune biomarkers. Further, we will conduct one-on-one interviews with study participants, health and social service providers, and administrators (total n = 60) from each collaborating agency, using NPT to explore perceptions and experiences of intervention uptake, the fidelity assessment tool and e-learning training as well as the benefits, barriers, and challenges to ATTACHTM implementation. Discussion The proposed study will assess effectiveness and implementation to help understand the delivery of ATTACHTM in community agencies. Trial registration Name of registry: https://clinicaltrials.gov/. Registration number: NCT04853888 . Date of registration: April 22, 2021.Item Open Access Subjective social status and its associations with social vulnerabilities and health(2017) Tang, Karen; Ghali, William; Manns, Braden; Rabi, Doreen; Santana, MariaBACKGROUND: Subjective social status (SSS) is the perception of where one stands in a social hierarchy, distinct from one’s actual, objective position in this hierarchy. SSS may influence health through behavioral and psychosocial mechanisms. METHODS: We conducted three sub-studies to examine whether SSS affects risk of and outcomes in chronic disease, and to explore the role of health care access and experience of social vulnerabilities in the SSS-health pathway. RESULTS: We found that low SSS is associated with increased risk of 1) cardiovascular disease; 2) hospital readmissions and barriers to health care access; and 3) social vulnerabilities that affect health care access. Having high perceived status in the community appears to mitigate the experience of social vulnerabilities through the ability to mobilize social supports. CONCLUSION: Subjective social status has important associations with health and clinical outcomes. These findings have implications to the development of interventions that aim to reduce disparities.Item Open Access Understanding the Knowledge, Perception, and Experiences of Patients about Precision Medicine and Biobanking; A Qualitative Study(2022-02) Haque, Mohammad; Page, Stacey; Santana, Maria; Roach, Pamela; Dubyk, Alexander-Sandy; Syme, RachelChronic Kidney Disease (CKD) patients’ knowledge, perception, and experiences surrounding Precision Medicine (PM) and biobanking were explored in this study. This study used a qualitative methodology. Data was collected by individual virtual interviews utilizing a semi-structured open-ended interview guide. Framework analysis was used on the resulting transcripts. Methodological rigor was achieved through credibility, reliability, and reflexivity. Four themes were identified concerning CKD patients’ knowledge, perception, and experiences of PM: benefits, concern, perceived barriers to implementing PM, and preferences on the informed consent model. Another four themes were identified regarding CKD patients’ knowledge, perception, and experiences of biobanking: benefits, concern about biobank research or donation of samples, factors that influence participation in biobank research, and ownership of donated samples. This unique study investigated the knowledge, perception, and experiences of CKD patients about PM and biobanking. The study results may help support programs and provisions that aim to overcome challenges that hinder a patient’s participation in PM and biobank research and consequently amplify patient engagement and awareness in PM and biobank research studies. In the end, the information gained from this study will add value to future PM and biobank research and clinical initiatives.Item Open Access “You need a team”: perspectives on interdisciplinary symptom management using patient-reported outcome measures in hemodialysis care—a qualitative study(2023-01-20) Baragar, Brigitte; Schick-Makaroff, Kara; Manns, Braden; Love, Shannan; Donald, Maoliosa; Santana, Maria; Corradetti, Bonnie; Finlay, Juli; Johnson, Jeffrey A.; Walsh, Michael; Elliott, Meghan J.Abstract Background Patient-reported outcome measures (PROMs) are standardized instruments used for assessing patients’ perspectives on their health status at a point in time, including their health-related quality of life, symptoms, functionality, and physical, mental, and social wellbeing. For people with kidney failure receiving hemodialysis, addressing high symptom burden and complexity relies on care team members integrating their expertise to achieve common management goals. In the context of a program-wide initiative integrating PROMs into routine hemodialysis care, we aimed to explore patients’ and clinicians’ perspectives on the role of PROMs in supporting interdisciplinary symptom management. Methods We employed a qualitative descriptive approach using semi-structured interviews and observations. Eligible participants included adult patients receiving intermittent, outpatient hemodialysis for > 3 months, their informal caregivers, and hemodialysis clinicians (i.e., nurses, nephrologists, and allied health professionals) in Southern Alberta, Canada. Guided by thematic analysis, team members coded transcripts in duplicate and developed themes iteratively through review, refinement, and discussion. Results Thirty-three clinicians (22 nurses, 6 nephrologists, 5 allied health professionals), 20 patients, and one caregiver participated in this study. Clinicians described using PROMs to coordinate care across provider types using the resources available in their units, whereas patients tended to focus on the perceived impact of this concerted care on symptom trajectory and care experience. We identified 3 overarching themes with subthemes related to the role of PROMs in interdisciplinary symptom management in this setting: (1) Integrating care for interrelated symptoms (“You need a team”, conducive setting, role clarity and collaboration); (2) Streamlining information sharing and access (symptom data repository, common language for coordinated care); (3) Reshaping expectations (expectations for follow-up, managing symptom persistence). Conclusions We found that use of PROMs in routine hemodialysis care highlighted symptom interrelatedness and complexity and helped to streamline involvement of the interdisciplinary care team. Issues such as role flexibility and resource constraints may influence sustainability of routine PROM use in the outpatient hemodialysis setting.