Assessing Breast Cancer Screening and Outcomes Among First Nations Women in Alberta.

BACKGROUND: Breast cancer (BC) incidence rates for First Nations (FN) women in Canada have been steadily increasing and are often diagnosed at a later stage. Despite efforts to expand the reach of BC screening programs for FN populations in Alberta (AB), gaps in screening and outcomes exist. METHODS: Existing population-based administrative databases including the AB BC Screening Program, the AB Cancer Registry, and an AB-specific FN registry data were linked to evaluate BC screening participation, detection, and timeliness of outcomes in this retrospective study. Tests of proportions and trends compared the findings between FN and non-FN women, aged 50-74 years, beginning in 2008. Incorporation of FN principles of ownership, control, access, and possession (OCAP®) managed respectful sharing and utilization of FN data and findings. RESULTS: The average age-standardized participation (2013-8) and retention rates (2015-6) for FN women compared to non-FN women in AB were 23.8% (P < .0001) and 10.3% (P = .059) lower per year, respectively. FN women were diagnosed with an invasive cancer more often in Stage II (P-value = .02). Following 90% completion of diagnostic assessments, it took 2-4 weeks longer for FN women to receive their first diagnosis as well as definitive diagnoses than non-FN women. CONCLUSION: Collectively, these findings suggest that access to and provision of screening services for FN women may not be equitable and may contribute to higher BC incidence and mortality rates. Collaborations between FN groups and screening programs are needed to eliminate these inequities to prevent more cancers in FN women.

Creation of a Métis-Specific Instrument for Cancer Screening: A Scoping Review of Cancer-Screening Programs and Instruments.

Understanding the barriers to and facilitators of cancer screening programs among Indigenous populations remains limited. In the spirit of mutual respect, this co-led, collaborative project was carried out between the Métis Nation of Alberta and Screening Programs from Alberta Health Services (AHS). This scoping review assessed the cancer screening literature for available questionnaires and then identified themes and suitable questions for a Métis-specific cancer screening questionnaire. Literature searches on cervical, breast, and colorectal cancer screening programs and related concepts were conducted in electronic databases, including the Native Health Database, MEDLINE (Ovid), PsycINFO, PubMed, PubMed Central, CINAHL, MEDLINE (Ebsco), Psychology & Behavioral Sciences Collection, and Web of Science. Grey literature was collected from AHS Insite, Open Archives Initiative repository, American Society of Clinical Oncology, European Society of Medical Oncology, Google, and Google Scholar. 135 articles were screened based on the eligibility criteria with 114 articles selected, including 14 Indigenous-specific ones. Knowledge, attitude, belief, behaviour, barrier, and facilitator themes emerged from the review, but no Métis-specific cancer screening instruments were found. Thus, one was developed using existing cancer screening instruments, with additional questions created by the project team. A survey of the Métis population in Alberta will use this questionnaire and provide data to address the burden of cancer among Métis people.

Health-Related and Psychosocial Factors Associated with Prostate Cancer Stage at Diagnosis among Males Participating in Alberta's Tomorrow Project.

Prostate cancer (PCa) stage at diagnosis is an important predictor of cancer prognosis. In Canada, over one-quarter of males are diagnosed with advanced-stage PCa. Studies have identified several factors associated with PCa stage at diagnosis; however, evidence from Canada is limited. This study aimed to examine associations between sociodemographic characteristics, health history, health practices, and psychosocial factors and PCa stage at diagnosis among males participating in Alberta's Tomorrow Project (ATP), a prospective cohort in Alberta, Canada. The study included males aged 35-69 years who developed PCa until January 2018. Factors associated with PCa stage at diagnosis were examined using partial proportional odds (PPO) ordinal regression models. A total of 410 males were diagnosed with PCa over the study period. A higher number of lifetime prostate-specific antigen tests were associated with earlier-stage PCa (OR 0.91, p = 0.02, 95% CI 0.83-0.99), while higher abdominal circumference (OR 1.02, p = 0.05, 95% CI 1.00-1.03), lower social support (OR 2.34, p < 0.01, 95% CI 1.31-4.17), and having children (OR 2.67, p < 0.01, 95% CI 1.38-5.16) were associated with later-stage disease. This study identified factors previously found in the literature as well as novel factors associated with PCa stage at diagnosis, which can help inform targets for cancer prevention programs to improve PCa prognosis.

Design Principles in mHealth Interventions for Sustainable Health Behavior Changes: Protocol for a Systematic Review.

BACKGROUND: In recent years, mHealth has increasingly been used to deliver behavioral interventions for disease prevention and self-management. Computing power in mHealth tools can provide unique functions beyond conventional interventions in provisioning personalized behavior change recommendations and delivering them in real time, supported by dialogue systems. However, design principles to incorporate these features in mHealth interventions have not been systematically evaluated. OBJECTIVE: The goal of this review is to identify best practices for the design of mHealth interventions targeting diet, physical activity, and sedentary behavior. We aim to identify and summarize the design characteristics of current mHealth tools with a focus on the following features: (1) personalization, (2) real-time functions, and (3) deliverable resources. METHODS: We will conduct a systematic search of electronic databases, including MEDLINE, CINAHL, Embase, PsycINFO, and Web of Science for studies published since 2010. First, we will use keywords that combine mHealth, interventions, chronic disease prevention, and self-management. Second, we will use keywords that cover diet, physical activity, and sedentary behavior. Literature found in the first and second steps will be combined. Finally, we will use keywords for personalization and real-time functions to limit the results to interventions that have reported these design features. We expect to perform narrative syntheses for each of the 3 target design features. Study quality will be evaluated using the Risk of Bias 2 assessment tool. RESULTS: We have conducted a preliminary search of existing systematic reviews and review protocols on mHealth-supported behavior change interventions. We have identified several reviews that aimed to evaluate the efficacy of mHealth behavior change interventions in a range of populations, evaluate methodologies for assessing mHealth behavior change randomized trials, and assess the diversity of behavior change techniques and theories in mHealth interventions. However, syntheses on the unique features of mHealth intervention design are absent in the literature. CONCLUSIONS: Our findings will provide a basis for developing best practices for designing mHealth tools for sustainable behavior change. TRIAL REGISTRATION: PROSPERO CRD42021261078; https://tinyurl.com/m454r65t. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/39093.

Patients' Use of Mobile Health for Self-management of Knee Osteoarthritis: Results of a 6-Week Pilot Study.

BACKGROUND: In a previous study, a prototype mobile health (mHealth) app was co-designed with patients, family physicians, and researchers to enhance self-management and optimize conservative management for patients with mild to moderate knee osteoarthritis (OA). OBJECTIVE: This study aims to evaluate the overall usability, quality, and effectiveness of the mHealth app prototype for aiding knee OA self-management from the perspectives of patients with OA and health care providers (HCPs). METHODS: Using methods triangulation of qualitative and quantitative data, we conducted a pilot evaluation of an mHealth app prototype that was codeveloped with patients and HCPs. We recruited adult patients aged ≥20 years with early knee OA (n=18) who experienced knee pain on most days of the month at any time in the past and HCPs (n=7) to participate. In the qualitative assessment, patient and HCP perspectives were elicited on the likeability and usefulness of app features and functionalities and the perceived impact of the app on patient-HCP communication. The quantitative assessment involved evaluating the app using usability, quality, and effectiveness metrics. Patient baseline assessments included a semistructured interview and survey to gather demographics and assess the quality of life (European Quality-of-Life 5-Dimension 5-Level Questionnaire [EQ-5D-5L]) and patient activation (patient activation measure [PAM]). Following the 6-week usability trial period, a follow-up survey assessed patients' perceptions of app usability and quality and longitudinal changes in quality of life and patient activation. Semistructured interviews and surveys were also conducted with HCPs (n=7) at baseline to evaluate the usability and quality of the app prototype. RESULTS: Interviews with patients and HCPs revealed overall positive impressions of the app prototype features and functionalities related to likeability and usefulness. Between the baseline and follow-up patient assessments, the mean EQ-5D-5L scores improved from 0.77 to 0.67 (P=.04), and PAM scores increased from 80.4 to 87.9 (P=.01). Following the 6-week evaluation, patients reported a mean System Usability Scale (SUS) score of 57.8, indicating marginal acceptability according to SUS cutoffs. The mean number of goals set during the usability period was 2.47 (SD 3.08), and the mean number of activities completed for knee OA self-management during the study period was 22.2 (SD 17.8). Spearman rank correlation (rs) calculations revealed that the follow-up PAM scores were weakly correlated (rs=-0.32) with the number of goals achieved and the number (rs=0.19) of activities performed during the 6-week usability period. HCPs reported a mean SUS score of 39.1, indicating unacceptable usability. CONCLUSIONS: This evidence-based and patient-centered app prototype represents a potential use of mHealth for improving outcomes and enhancing conservative care by promoting patient activation and patient-HCP communication regarding OA management. However, future iterations of the app prototype are required to address the limitations related to usability and quality.

(Un)standardized testing: the diagnostic odyssey of children with rare genetic disorders in Alberta, Canada.

PURPOSE: We provide a description of the diagnostic odyssey for a cohort of children seeking diagnosis of a rare genetic disorder in terms of the time from initial consultation to most recent visit or receipt of diagnosis, the number of tests per patient, and the types of tests received. METHODS: Retrospective chart review of 299 children seen at the Alberta Children's Hospital (ACH) Genetics Clinic (GC) for whom the result of at least one single-gene test, gene panel, or chromosome microarray analysis (CMA) was recorded. RESULTS: Of 299 patients, 90 (30%) received a diagnosis in the period of the review. Patients had an average of 5.4 tests each; 236 (79%) patients received CMA; 172 (58%) patients received single-gene tests and 34 (11%) received gene panels; 167 (56%) underwent imaging/electrical activity studies. The mean observation period was 898 days (95% confidence interval [CI] 791, 1004). Among patients with visits recorded prior to visiting ACH GC, 43% of the total observation time occurred prior to the GC. CONCLUSION: As genomic technologies expand, the nature of the diagnostic odyssey will change. This study has outlined the current standard of care in the ACH GC, providing a baseline against which future changes can be assessed.

Co-Design in the Development of a Mobile Health App for the Management of Knee Osteoarthritis by Patients and Physicians: Qualitative Study.

BACKGROUND: Despite a doubling of osteoarthritis-targeted mobile health (mHealth) apps and high user interest and demand for health apps, their impact on patients, patient outcomes, and providers has not met expectations. Most health and medical apps fail to retain users longer than 90 days, and their potential for facilitating disease management, data sharing, and patient-provider communication is untapped. An important, recurrent criticism of app technology development is low user integration design. User integration ensures user needs, desires, functional requirements, and app aesthetics are responsive and reflect target user preferences. OBJECTIVE: This study aims to describe the co-design process for developing a knee osteoarthritis minimum viable product (MVP) mHealth app with patients, family physicians, and researchers that facilitates guided, evidence-based self-management and patient-physician communication. METHODS: Our qualitative co-design approach involved focus groups, prioritization activities, and a pre-post quality and satisfaction Kano survey. Study participants included family physicians, patient researchers and patients with knee osteoarthritis (including previous participants of related collaborative research), researchers, key stakeholders, and industry partners. The study setting was an academic health center in Southern Alberta. RESULTS: Distinct differences exist between what patients, physicians, and researchers perceive are the most important, convenient, desirable, and actionable app functional requirements. Despite differences, study participants agreed that the MVP should be electronic, should track patient symptoms and activities, and include features customized for patient- and physician-identified factors and international guideline-based self-management strategies. Through the research process, participants negotiated consensus on their respective priority functional requirements. The highest priorities were a visual symptom graph, setting goals, exercise planning and daily tracking, and self-management strategies. The structured co-design with patients, physicians, and researchers established multiple collaborative processes, grounded in shared concepts, language, power, rationale, mutual learning, and respect for diversity and differing opinions. These shared team principles fostered an open and inclusive environment that allowed for effective conceptualization, negotiation, and group reflection, aided by the provision of tangible and ongoing support throughout the research process, which encouraged team members to question conventional thinking. Group-, subgroup-, and individual-level data helped the team reveal how and for whom perspectives about individual functional requirements changed or remained stable over the course of the study. This provided valuable insight into how and why consensus emerged, despite the presence of multiple and differing underlying rationales for functional requirement prioritization. CONCLUSIONS: It is feasible to preserve the diversity of perspectives while negotiating a consensus on the core functional requirements of an mHealth prototype app for knee osteoarthritis management. Our study sample was purposely constructed to facilitate high co-design interactivity. This study revealed important differences between the patient, physician, and researcher preferences for functional requirements of an mHealth app that did not preclude the development of consensus.

Qualitative study to elicit patients' and primary care physicians' perspectives on the use of a self-management mobile health application for knee osteoarthritis.

OBJECTIVE: To elicit perspectives of family physicians and patients with knee osteoarthritis (KOA) on KOA, its treatment/management and the use of a mobile health application (app) to help patients self-manage their KOA. DESIGN: A qualitative study using Cognitive Task Analysis for physician interviews and peer-to-peer semistructured interviews for patients according to the Patient and Community Engagement Research (PaCER) method. SETTING: Primary care practices and patient researchers at an academic centre in Southern Alberta. PARTICIPANTS: Intentional sampling of family physicians (n=4; 75% women) and patients with KOA who had taken part in previous PaCER studies and had experienced knee pain on most days of the month at any time in the past (n=5; 60% women). RESULTS: Physician and patient views about KOA were starkly contrasting. Patient participants expressed that KOA seriously impacted their lives and lifestyles, and they wanted their knee pain to be considered as important as other health problems. In contrast, physicians uniformly conceptualised KOA as a relatively minor health problem, although they still recognised it as a painful condition that often limits patients' activities. Consequently, physicians did not regard KOA as a condition to be proactively and aggressively managed. The gap between physicians' and patients' conceptualisation of KOA and its treatment extended to the use of an app for self-management. While patients were supportive of the app, physicians were sceptical of its use and focused more on accountability and patient resources. CONCLUSIONS: The clear discord between physicians' mental models and patients' lived experience and perceived needs around KOA emphasised a gap in understanding and communication about treatment and management of KOA. As such, this preliminary and formative research will inform a codesign approach to develop an app that will act as a communications tool between patients and physicians, enabling patient-physician discussions regarding modifiable self-management options based on a patient's perspectives and needs.