Enhancing the delivery of comprehensive care for people living with HIV in Canada: insights from citizen panels and a national stakeholder dialogue.

BACKGROUND: People living with human immunodeficiency virus (HIV) are living longer with health-related disability associated with ageing, including complex conditions. However, health systems in Canada have not adapted to meet these comprehensive care needs. METHODS: We convened three citizen panels and a national stakeholder dialogue. The panels were informed by a plain-language citizen brief that outlined data and evidence about the challenge/problem, elements of an approach for addressing it and implementation considerations. The national dialogue was informed by a more detailed version of the same brief that included a thematic analysis of the findings from the panels. RESULTS: The 31 citizen panel participants emphasized the need for more prevention, testing and social supports, increased public education to address stigma and access to more timely data to inform system changes. The 21 system leaders emphasized the need to enhance person-centred care and for implementing learning and improvement across provinces, territories and Indigenous communities. Citizens and system leaders highlighted that policy actions need to acknowledge that HIV remains unique among conditions faced by Canadians. CONCLUSIONS: Action will require a national learning collaborative to support spread and scale of successful prevention, care and support initiatives. Such a collaborative should be grounded in a rapid-learning and improvement approach that is anchored on the needs, perspectives and aspirations of people living with HIV; driven by timely data and evidence; supported by appropriate decision supports and aligned governance, financial and delivery arrangements; and enabled with a culture of and competencies for rapid learning and improvement.

Patterns of cesarean birth among women living with HIV in Ontario: A cross-sectional, population-level study.

BACKGROUND: In Canada, as is found globally, women of reproductive age are a growing demographic of persons living with HIV. Combination antiretroviral therapy (cART) treatment enables women living with HIV (WLWH) to become pregnant without perinatal transmission, and they are increasingly planning to become pregnant. Since 2014, Canadian guidelines no longer recommend routine elective cesarean birth (CB) for women who are virally suppressed and receiving cART. It is unknown whether their obstetric care has changed since this update. Our objective was to describe trends in cesarean births among WLWH in Ontario, Canada, over a 12-year period. METHODS: Our research is co-led and codesigned with WLWH. We conducted a retrospective population-level cohort study using linked health administrative databases at ICES (formally, the Institute for Clinical and Evaluative Sciences). Participants were all women who gave birth in Ontario, between 2006/07 and 2017/18. We assessed their intrapartum characteristics and used multivariable regression to determine an association between HIV status and CB, controlling for sociodemographic and clinical variables. RESULTS: Since 2014, the overall proportion of CB among WLWH remained stable and was higher than among women without HIV (39.9% vs 29.0%, P < 0.001). In addition, the proportion of primary CB decreased between 2006 and 2010 and between 2014 and 2018 (28.5%-19.3%), whereas the proportion of repeat CB increased (13.1%-20.5%, P = 0.013). CONCLUSIONS: Because of decreasing HIV-related indications for CB, more practitioners may be following the guidelines for first-time mothers. Currently, no guidelines exist for care of WLWH with a previous CB, and opportunities for vaginal birth may be missed in this population.

Cohort profile: the LHIV-Manitoba clinical cohort of people living with HIV in Manitoba, Canada.

PURPOSE: The LHIV-Manitoba cohort was developed as a way to provide a comprehensive source of HIV-related health information in the central Canadian Prairie province of Manitoba. The cohort will provide important information as we aim to better understand local HIV epidemiology and address key knowledge and practice gaps in HIV prevention, treatment and care programming in the province. PARTICIPANTS: In total, 890 individuals, aged 18 or older and living or receiving HIV care in Manitoba are enrolled in the cohort. A complete clinical dataset exists for 725 participants, which includes variables on sociodemographic characteristics, comorbidities and co-infections, self-reported HIV exposure categories and HIV clinical indicators. A limited clinical dataset exists for an additional 165 individuals who were enrolled posthumously. 97.5% of cohort participants' clinical records are linked to provincial administrative health datasets. FINDINGS TO DATE: The average age of cohort participants is 49.7 years. Approximately three-quarters of participants are male, 42% self-identified as white and 42% as Indigenous. The majority of participants (64%) reported condomless vaginal sex as a risk exposure for HIV. Nearly one-fifth (18%) of participants have an active hepatitis C virus infection and the cohort's median CD4 count increased from 316 cells/mm3 to 518 cells/mm3 between time of entry into care and end of the first quarter in 2019. FUTURE PLANS: The LHIV-Manitoba cohort is an open cohort, and as such, participant enrolment, data collection and analyses will be continually ongoing. Future analyses will focus on the impact of provincial drug plans on clinical outcomes, determinants of mortality among cohort participants and deriving estimates for a local HIV care cascade.

Creating Clinical Cohorts: Challenges Encountered in Two Canadian Provinces.

In 2013, the Living with HIV (LHIV) Innovation team established clinical cohorts of people living with HIV in Manitoba and Newfoundland and Labrador, and they linked the data to provincial health administrative databases. Access to these data enabled researchers to conduct studies across provincial borders; contribute to a national dialogue on HIV health system performance; and give recommendations for evidence-based healthcare, health policy and public health. However, research funding is episodic; maintaining cohorts requires stable funding. We support the establishment of a cross-jurisdictional approach to facilitate streamlined data collection and linkage without interruption and to allow for meaningful analysis in order to inform national policies.

Evolving Toward Shared HIV Care Using the Champlain BASE eConsult Service.

Background. Electronic consultation (eConsultation) is a potential strategy to improve access to specialist expertise and facilitate collaborative care models. The Champlain BASE eConsult service allows for asynchronous communication between primary care providers (PCP) and specialists on a secure, web-based system. HIV experts accessible include HIV physician specialists, HIV pharmacists, and social workers with expertise in HIV. Objective. This study aims to describe the use, value, and utility of this eConsultation service in the care of people living with HIV and to characterize the common question types and clinical topics asked by PCPs. Methods. We analyzed the data from eConsults sent to the HIV specialty group in Ontario's Champlain Local Health Integration Network between February 2015 and December 2017. Usage data and close-out survey responses were analyzed using descriptive statistics, eConsults were classified using a predefined list of validated taxonomy, and a thematic analysis was performed on the consultation logs to identify common clinical themes. Results. Among the 46 eConsults, the most common question type related to drug treatment (58.7%, n = 27) and management (19.6%, n = 9). The main clinical themes involved the care of significant complexities in people living with HIV, such as comorbidities and drug interactions, and suggestions of coordinated patient care. As well, eConsult was used for advice regarding pre-exposure prophylaxis for HIV-negative patients at risk of HIV infection. PCPs highly valued the eConsult service (average rating 4.8/5). Conclusion. Overall, this study demonstrates that eConsult provides an efficient and valuable service to PCPs caring for patients living with or at risk for HIV by improving access to HIV specialists and facilitating the delivery of team-based comprehensive care.

How the delivery of HIV care in Canada aligns with the Chronic Care Model: A qualitative study.

With the advent of continuous antiretroviral therapy, HIV has become a complex chronic, rather than acute, condition. The Chronic Care Model (CCM) provides an integrated approach to the delivery of care for people with chronic conditions that could therefore be applied to the delivery of care for people living with HIV. Our objective was to assess the alignment of HIV care settings with the CCM. We conducted a mixed methods study to explore structures, organization and care processes of Canadian HIV care settings. The quantitative results of phase one are published elsewhere. For phase two, we conducted semi-structured interviews with key informants from 12 HIV care settings across Canada. Irrespective of composition of the care setting or its location, HIV care in Canada is well aligned with several components of the CCM, most prominently in the areas of linkage to community resources and delivery system design with inter-professional team-based care. We propose the need for improvements in the availability of electronic clinical information systems and self-management support services to support better care delivery and health outcomes among people living with HIV in Canada.

Canadian HIV Care Settings as Patient-Centered Medical Homes (PCMHs).

PURPOSE: For people living with HIV (PLWH) using continuous antiretroviral therapy, HIV is now a complex chronic condition often managed in primary care settings. The patient-centered medical home (PCMH) is a model to deliver comprehensive, coordinated, and integrated primary care that promotes collaboration between primary and specialist care and allied services. The study assessed how both Canadian primary and specialist HIV care settings align with the PCMH. METHODS: Mixed-methods surveys and interviews with providers in Canadian HIV care settings. RESULTS: Twenty-two settings completed the survey, 12 of which participated in follow-up interviews. Settings had a mean PCMH score of 8.06/12 (SD = 1.53), indicating the basic elements of each PCMH domain have been implemented. We found no significant differences between HIV primary care and specialist care settings. Continuous team-based healing relationships had the highest score (mean = 9.2; SD = 2.15), and quality improvement strategy had the lowest score (mean = 7.19; SD = 2.26). The themes that arose from the interviews were 1) endorsement of the domains of the PCMH by all settings, 2) organizational structures of settings located in hospitals facilitating the implementation of the PCMH through existing technology, patient advisory boards, and accessible services, and 3) dissonance between complex care needs and existing organizational structures in some settings, including limited clinic hours, lack of electronic medical records, and limited mental health services. CONCLUSIONS: HIV care in Canada is reasonably well aligned with the PCMH, irrespective of structure of settings. We propose the need for improvements in the use of electronic medical records, quality improvement strategies, and integration of mental health services to achieve better care delivery and health outcomes among PLWH in Canada.

The organizational attributes of HIV care delivery models in Canada: A cross-sectional study.

HIV treatment in Canada has rapidly progressed with the advent of new drug therapies and approaches to care. With this evolution, there is increasing interest in Canada in understanding the current delivery of HIV care, specifically where care is delivered, how, and by whom, to inform the design of care models required to meet the evolving needs of the population. We conducted a cross-sectional survey of Canadian care settings identified as delivering HIV care between June 2015 and January 2016. Given known potential differences in delivery approaches, we stratified settings as primary care or specialist settings, and described their structure, geographic location, populations served, health human resources, technological resources, and available clinical services. We received responses from 22 of 43 contacted care settings located in seven Canadian provinces (51.2% response rate). The total number of patients and HIV patients served by the participating settings was 38,060 and 17,678, respectively (mean number of HIV patients in primary care settings = 1,005, mean number of HIV patients in specialist care settings = 562). Settings were urban for 20 of the 22 (90.9%) clinics and 14 (63.6%) were entirely HIV focused. Primary care settings were more likely to offer preventative services (e.g., cervical smear, needle exchange, IUD insertion, chronic disease self-management program) than specialist settings. The study illustrates diversity in Canadian HIV care settings. All settings were team based, but primary care settings offered a broader range of preventative services and comprehensive access to mental health services, including addictions and peer support.

Patient activation among people living with HIV: a cross-sectional comparative analysis with people living with diabetes mellitus.

Standardized self-management supports are an integral part of care delivery for many chronic conditions. We used the validated Patient Activation Measure (PAM®) to assess level of engagement for self-management from a sample of 165 people living with HIV (PLWH) and 163 people with diabetes. We conducted multivariable logistic regression to assess associations between demographics and PAM® scores. PLWH had high levels of activation that were no different from those of people with diabetes (mean score = 67.2, SD = 14.2 versus 65.0, SD = 14.9, p = 0.183). After adjusting for patient characteristics, only being on disability compared to being employed or a student was associated with being less activated (AOR = 0.276, 95%CI = 0.103-0.742). Our findings highlight the potential for the implementation of existing standardized chronic disease self-management programs to enhance the care delivery for PLWH, with people on disability as potential target populations.

Challenges with access to healthcare from the perspective of patients living with HIV: a scoping review & framework synthesis.

Accessing healthcare can be difficult but the barriers multiply for people living with HIV (PLHIV). To improve access and the health of PLHIV, we must consider their perspectives and use them to inform standard practice. A better understanding of the current literature related to healthcare access from the perspective of PLHIV, can help to identify evidence gaps and highlight research priorities and opportunities. To identify relevant peer-reviewed publications, search strategies were employed. Electronic and grey literature databases were explored. Articles were screened based on their title and abstract and those that met the screening criteria, were reviewed in full. Data analysis was conducted using a collaborative approach that included knowledge user consultation. Initial concepts were extracted, summarized and through framework synthesis, developed into emerging and final themes. From 20,678 articles, 326 articles met the initial screening criteria and 64 were reviewed in full. The final themes identified, in order of most to least frequent were: Acceptability, Availability, Accessibility, Affordability, Other Barriers, Communication, Satisfaction, Accommodation, Preferences and Equity in Access. The most frequently discussed concepts related to negative interactions with staff, followed by long wait times, limited household resources or inability to pay fees, and fear of one's serostatus being disclosed. Knowledge users were in agreement with the categorization of initial concepts and final themes; however, some gaps in the literature were identified. Specific changes are critical to improving access to healthcare for PLHIV. These include improving availability by ensuring staff and healthcare professionals have proper training, cultivating acceptability and reducing stigma through improving HIV awareness, increasing accessibility through increased HIV information for PLHIV and improved dissemination of this information to increase patient knowledge and health awareness. Finally, ensuring proper protocols are implemented and followed to guarantee patient confidentiality and overall satisfaction with healthcare services are recommended.

Supported Standing in Boys With Duchenne Muscular Dystrophy.

PURPOSE: To evaluate the safety, tolerability, and efficacy of supported standing in a small sample of boys with Duchenne muscular dystrophy (DMD). METHODS: Four 12- to 15-year-old boys with DMD engaged in a home-based supported standing program for 6 to 12 months. A single-subject design was employed to examine muscle length. Bone mineral density was assessed at 4-month intervals using dual-energy x-ray absorptiometry. RESULTS: Upright, sustained supported standing was tolerated in 3 of the 4 boys. Mean weekly stand times ranged from 1.3 to 3.3 hours. Improved hip or knee flexor muscle length was seen in 3 of the 4 boys. No boys showed improved plantar flexor muscle length or increased lumbar bone mineral density. CONCLUSIONS: Findings offer preliminary empirical evidence addressing the safety, tolerability, and efficacy of standing in boys with DMD. Additional research with an emphasis on better program adherence is indicated.