Deborah Marshall

The University of Calgary · Department of Community Health Sciences

Objectives The roles and potential value of patient preference (PP) data in health technology assessment (HTA) remain to be fully realized despite an expanding literature and various efforts to establish their utility. This article reports lessons learned through a series of collaborative workshops with HTA representatives, organized by the Health...

Introduction Fecal microbial transplantation (FMT) has shown promise at inducing remission in ulcerative colitis. This study is the first of its kind to evaluate the efficacy and safety of FMT at inducing remission in Crohn’s disease (CD). Methods This double-blind, placebo-controlled trial was conducted in three Canadian academic centers; randomi...

Introduction Digital health tools can be beneficial in the care of patients with chronic conditions and have the potential for widespread impact as readily scalable and cost-effective health interventions. However, benefits are often contingent on users sustaining their engagement with these tools over time. Sustained engagement with digital health...

Background Osteoarthritis is more prevalent and severe among women than among men, but women are less likely to access early diagnosis and first-line management, particularly racialized immigrant women. Previous research advocated for greater access to culturally safe osteoarthritis information for both diverse women and health care professionals....

Background Digital health interventions (DHIs) could be a valuable self-management tool for patients with irritable bowel syndrome (IBS), but little research exists on IBS-focused DHIs and their effectiveness. This review aimed to identify DHIs for IBS and evaluate their characteristics, effectiveness, and feasibility. Methods Our study team, incl...

As we adopt value models to inform drug reimbursement, coverage, clinical trials, and treatment choices, aligning these models to reflect patient values and preferences becomes increasingly relevant. In this study, we focus on colorectal cancer (CRC), which is highly prevalent and a leading cause of death in Canada, and new drug treatment options a...

Objectives Juvenile idiopathic arthritis (JIA) is the most common type of arthritis among children. It can cause joint pain and permanent physical damage, which affects mobility and daily activities. The EQ-5D-Y-3L self-report version has been validated in JIA, but the validity of EQ-5D-Y-5L remains unknown. We examined the psychometric properties...

Background There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative researc...

Despite the emerging evidence in recent years, successful implementation of clinical genomic sequencing (CGS) remains limited and is challenged by a range of barriers. These include a lack of standardized practices, limited economic assessments for specific indications, limited meaningful patient engagement in health policy decision-making, and the...

Background We aimed to establish a cohort of persons with Crohn’s disease (CD) enrolled from 14 Canadian centers to describe the contemporary presentation of CD in Canada. Methods All enrollees were at least 18 years old and underwent chart review for phenotype documentation by Montreal Classification at time of enrollment, comorbidities, inflamma...

Background Fecal microbiota transplantation (FMT) is a promising treatment for active ulcerative colitis (UC). Understanding patient preferences can identify treatment features that may impact treatment decisions, improve shared decision-making, and contribute to patient-centered care, which is especially important in the context of novel treatment...

There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. We used a convergent mixed method des...

Background Decision aids can help patients set realistic expectations. In this study, we explored alternative presentations to visualise patient-reported outcomes (EQ-5D-5L) data within an online, individualized patient decision aid for total knee arthroplasty (TKA) that, in part, generates individualized comparisons based on age, sex and body mass...

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BACKGROUND Osteoarthritis is more prevalent and severe among women than among men, but women are less likely to access early diagnosis and first-line management, particularly racialized immigrant women. Previous research advocated for greater access to culturally safe osteoarthritis information for both diverse women and health care professionals....

Objective To quantify differences in hospital-associated costs, and accompanying travel costs and productivity losses, before and after withdrawing TNF-α inhibitors (TNFi) in JIA patients. Methods This was a retrospective analysis of prospectively collected data from electronic medical records of paediatric JIA patients treated with TNFi, which we...

Introduction There are more than 7,000 rare diseases (RDs), which are individually rare but have a large collective impact on patients and families, the health system, and society. There are few treatments for RD; where treatments do exist, they are often exceptionally expensive. Understanding the socioeconomic burden (SEB) of RD is crucial to prop...

Introduction Patients suspected of having a rare genetic disease often experience lengthy and costly diagnostic odysseys. The timing of whole exome sequencing (WES) in the testing sequence, its diagnostic yield and test costs in the sequence all factor into estimates of cost-effectiveness analysis for health technology assessment. Methods We model...

Introduction The methodology for explicitly incorporating patient preferences by expert committees engaged in deliberative health technology assessment (HTA) processes for drug reimbursement recommendations is a relatively unexplored area despite the growing emphasis on patient-reported outcomes and patient engagement. The Patient Values Project (P...

Background Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods We established two small research groups, a Patient Researcher-Led Group and an Acad...

Objective The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research. Design We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. On...

Rationale: Timely assessment of a chronic condition is critical to prevent long-term irreversible consequences. Patients with inflammatory arthritis (IA) symptoms require diagnosis by a rheumatologist and intervention initiation to minimize potential joint damage. With limited rheumatologist capacity, meeting urgency wait time benchmarks can be ch...

Background As Canada and other high-income countries continue to welcome newcomers, we aimed to 1) understand newcomer parents’ attitudes towards routine-childhood vaccinations (RCVs), and 2) identify barriers newcomer parents face when accessing RCVs in Alberta, Canada. Methods Between July 6th—August 31st, 2022, we recruited participants from Al...

Objective Approximately one third of children with JIA receive biologic therapy, but evidence on biologic therapy withdrawal is lacking. This study aims to increase our understanding of whether and when pediatric rheumatologists postpone a decision to withdraw biologic therapy in children with clinically inactive non-systemic JIA. Methods A survey...

Health policies and associated research initiatives are constantly evolving and changing. In recent years, there has been a dizzying increase in research on emerging topics such as the implications of changing public and private health payment models, the global impact of pandemics, novel initiatives to tackle the persistence of health inequities,...

Objective: To explore the application of online analytic processing (OLAP) to improve the efficiency of analytics using large administrative health data sets. Methods: 18 years of administrative health data (1994/95 to 2012/13) were obtained from the Alberta Ministry of Health in Canada. The data sets included hospitalization, ambulatory care and p...

Objectives: Care for JIA patients has been transformed in the biologics era; however, biologics carry important (although rare) risks and are costly. Flares after biological withdrawal are seen frequently, yet there is little clinical guidance to identify which patients in clinical remission can safely have their biologic discontinued (by stopping...

Objective To determine whether and how often the information to measure a set of key performance indicators (KPIs) in juvenile idiopathic arthritis (JIA) is found in data collected routinely in a Pediatric Rheumatology Clinic. Methods A retrospective electronic chart review and administrative data analysis was conducted for a cohort of 140 patient...

Objectives One-fifth of total knee arthroplasty (TKA) recipients experience a suboptimal outcome. Incorporation of patients’ preferences in TKA assessment may improve outcomes. We determined the discriminant ability of preoperative measures of TKA need, readiness/willingness and expectations for a good TKA outcome. Methods In patients with knee os...

Background and Objective Rare diseases place a significant burden on patients, families, the healthcare system, and society. Evidence on the socioeconomic burden of rare disease is limited and mostly reflects diseases where treatments are available. We developed a framework encompassing recommended cost elements for studies of the socioeconomic bur...

Objective To examine the association between rheumatologist access, early treatment and ongoing care of older onset rheumatoid arthritis (RA) and healthcare utilization and costs following diagnosis. Methods We analyzed data from a population-based inception cohort of individuals age >65 years with RA in Ontario, Canada diagnosed between 2002-2014...

Delays beyond recommended wait times, especially for specialist services, are associated with adverse health outcomes. The Alberta Surgical Initiative aims to improve the referral wait time—the time between a referral is received at the central intake to the time a specialist sees the patient. Using the discrete event simulation modelling approach,...

Objective To determine whether there were improvements in rheumatology care for rheumatoid arthritis (RA) between 2002 and 2019 in Ontario, Canada, and to evaluate the impact of rheumatologist regional supply on access. Methods We conducted a population-based retrospective study of all individuals diagnosed with RA between January 1, 2002 and Dece...

Rationale: Total knee arthroplasty is a common surgical procedure but not appropriate for all patients with knee osteoarthritis. Patient decision aids (PtDAs) can promote shared decision making and enhance understanding and expectations of procedures among patients, resulting in better discussions between patients and healthcare providers about wh...

Objectives: Having previously shown similar clinical outcomes, this study compared the healthcare resource utilization and direct costs in stable patients with RA followed in the nurse-led care (NLC) and rheumatologist-led care (RLC) models. Methods: Previously collected clinical data were linked to data on practitioner claims, ambulatory care,...

Introduction: Delivered in person, yoga is effective in managing irritable bowel syndrome (IBS) symptoms. The evidence for efficacy, feasibility, and safety of virtually delivered yoga for patients with IBS is unknown. Methods: Adults diagnosed with IBS were randomized to either Hatha yoga intervention of 8 weekly online classes delivered virtua...

Purpose To define patient acceptable symptom state (PASS) cut-off values for the EQ-5D-5L and Oxford hip (OHS) and knee (OKS) scores 6 and 12 months after total hip (THR) or knee (TKR) replacement. To compare PASS cut-off values for the EQ-5D-5L scored using: (1) the Canadian value set, (2) the crosswalk value set, and (3) the equal weighted Level...

Background Clinical trial design requires value judgements and understanding patient preferences may help inform these judgements, for example when prioritizing treatment candidates, designing complex interventions, selecting appropriate outcomes, determining clinically important thresholds, or weighting composite outcomes. Preference elicitation m...

Objectives Delays in access to specialty care and elective hip and knee total joint replacement (TJR) surgery remain a major concern among patients with osteoarthritis (OA) in Canada. Centralized intake systems as a wait time management strategy in the face of resource constraints can increase access and patient flow through the system but are not...

Introduction: Despite the superior diagnostic performance of exome and genome sequencing compared with conventional genetic tests, evidence gaps related to clinical utility and cost effectiveness have limited their availability in routine clinical practice in many jurisdictions. To inform adoption and reimbursement policy, this protocol provides a...

Objectives To identify irritable bowel syndrome (IBS) patients’ attitudes, subjective norms, perceived control and intention to practice yoga and gastroenterologists’ attitudes and current yoga recommendations for their patients with IBS. Methods Gastroenterologists and IBS patients completed online surveys including Theory of Planned Behaviour (T...

Objective This study investigates the relationship of child, caregiver, and caring context measurements with the care-related quality of life (CRQoL) and health-related quality of life (HRQoL) of caregivers of children with juvenile idiopathic arthritis (JIA). Methods We performed a cross-sectional analysis of baseline data on caregivers of childr...

Background: Adherence to non-pharmaceutical interventions (NPIs) for COVID-19, including physical distancing, masking, staying home while sick, and avoiding crowded indoor spaces remain critical for limiting the spread of COVID-19. Objective: This study tests the effectiveness of using various persuasive appeals (deontological moral frame, empat...

Background Bluetooth-enabled smartphone apps have been developed and implemented in different sites globally to help overcome capacity limitations of traditional interview-based COVID-19 contact tracing. Two apps are currently available in Canada: ABTraceTogether exclusively in Alberta and COVID Alert in nine other provinces and territories. This s...

Objective The aim of this study was to quantify costs of hospital‐associated care for juvenile idiopathic arthritis (JIA), provide insights in patient‐level variation in costs, and investigate costs over time from the moment of JIA diagnosis. Results were reported for all JIA patients in general and by subtype. Methods This study was a single‐cen...

Rural Canadians have high health care needs due to high prevalence of osteoarthritis (OA) but lack access to care. Examining realized access to three types of providers (general practitioners (GPs), orthopedic surgeons (Ortho), and physiotherapists (PTs)) simultaneously helps identify gaps in access to needed OA care, inform accessibility assessmen...

Objective The objective of this study was to evaluate the effectiveness of an online patient decision aid with individualised potential outcomes of surgery, on the quality of decisions for knee replacement surgery in routine clinical care. Design A pragmatic Randomized Controlled Trial (RCT) in patients considering total knee replacement at a high...

Introduction: When delivered in person, yoga has been shown to be effective in managing irritable bowel syndrome (IBS) symptoms. Research is needed to test the feasibility and effectiveness of yoga as a therapeutic option when delivered virtually. The primary aim of the mind and yoga for IBS randomised controlled trial is to determine the effects...

The utilization of non-local primary care physicians (PCP) is a key primary care indicator identified by Alberta Health to support evidence-based healthcare planning. This study aims to identify area-level factors that are significantly associated with non-local PCP utilization and to examine if these associations vary between rural and urban areas...

Objective To investigate medication prescription patterns among children with juvenile idiopathic arthritis (JIA), including duration, sequence and reasons for medication discontinuation. Methods This study is a single-center, retrospective analysis of prospective data from electronic medical records of JIA patients receiving systemic therapy aged...

Objective To determine the relationship between patients' preoperative readiness for total knee arthroplasty (TKA) and surgical outcome at 1 year post‐TKA. Methods This prospective cohort study recruited patients with knee osteoarthritis (OA) who were ≥30 years and were referred for TKA at 2 hip/knee surgery centers in Alberta, Canada. Those who u...

Objective: The study objective was to assess adherence to system-level performance measures measuring retention in rheumatology care and disease modifying anti-rheumatic drug (DMARD) treatment in rheumatoid arthritis (RA). Methods: We used a validated health administrative data case definition to identify individuals with RA in Ontario, Canada,...

Background Inflammatory bowel disease (IBD) can lead to substantial impairments of quality-of-life. Clinical guidelines and quality indicators aid physicians in practice but may not reflect the perspectives and experiences of patients with IBD. To address this, the objectives of this study were to understand patient experiences with IBD care and to...

Objective Pharmacological treatment is a cornerstone of care for children with juvenile idiopathic arthritis (JIA). The objective of this study is to evaluate prescription patterns of conventional and biologic disease modifying anti-rheumatic drugs (c-DMARDs and b-DMARDs) for patients with JIA. Methods We conducted a retrospective cohort study of...

Background Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under‐supported in clinical settings and research. Objectives This study explo...

Objectives To understand Canadian’s attitudes and current behaviours towards COVID-19 public health measures (PHM), vaccination and current public health messaging, to provide recommendations for a public health intervention. Design Ten focus groups were conducted with 2–7 participants/group in December 2020. Focus groups were transcribed verbatim...

Background: Approximately half of patients with hip and knee osteoarthritis have tried non-surgical management before surgical consultation. Understanding the many factors affecting the uptake of recommended strategies is important to inform future development of such management strategies. Objectives: The aim of this study was to explore and id...

Background: Few studies have examined pediatric rheumatologists' approaches to treatment decision making for biologic therapy for patients with juvenile idiopathic arthritis (JIA). This study presents the qualitative research undertaken to support the development of a Best-Worst Scaling (BWS) survey for tapering in JIA. The study objectives were t...

Objectives The Rheumatoid Arthritis (RA) Quality of Care Survey (RAQCS) was developed to measure care quality according to a previously developed national RA quality improvement framework. Methods The development of the RAQCS occurred over 3 phases. First, the survey was developed by a team of healthcare providers, researchers, and two patient par...

Background: Rising total knee arthroplasty (TKA) rates in younger patients raises concern about appropriateness. We asked: are younger individuals who seek consultation for TKA less likely to be appropriate for and, controlling for appropriateness, more likely to be recommended for surgery? Methods: This cross-sectional study was nested within a...

Background: Osteoarthritis management aims to reduce pain and improve function. Many factors affect whether patients follow recommended strategies. Locus of control refers to individual beliefs around who and what influences health. Locus of control is related to the treatment strategies patients prefer. Currently, no studies explore locus of cont...

Background The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and use of this information to inform treatment decisions by pediatric patients and their parents. However, the methods to educate pediatric patie...

Background and ObjectivePatients can express preferences for different treatment options in a healthcare context, and these can be measured with quantitative preference elicitation methods.Objective Our objective was to conduct a scoping review to determine how preference elicitation methods have been used in the design of clinical trials.Methods W...

Purpose To facilitate robust economic analyses of clinical exome and genome sequencing, this study was taken up with the objective of establishing a framework for organizing diagnostic testing trajectories for patients with rare disease. Methods We collected diagnostic investigations–related data before exome sequencing from the medical records of...