How Do Treatment Priorities Differ Between Patients in HIV Care and Their Providers? A Mixed-Methods Study

Fredericksen, Rob J.; Fitzsimmons, Emma; Gibbons, Laura E.; Loo, Stephanie; Dougherty, Sarah; Avendano-Soto, Sonia; Anderson, Will; Gutiérrez, Cristina; Shurbaji, Sally; Burleson, Savannah; Christopoulos, Katerina; Poceta, Joanna; Mayer, Kenneth H.; Mugavero, Michael J.; Mathews, William C; Crane, Paul K.; Crane, Heidi M.

doi:10.1007/s10461-019-02746-8

Cited by 12 publications

(11 citation statements)

References 22 publications

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“…These research priorities were developed from the perspectives of a multidisciplinary group of stakeholders with longstanding clinical, research and lived experiential expertise in HIV, aging and rehabilitation. Our community-engaged approaches involving people living with HIV in the consultation and development of the Framework was a strength given evidence suggests priorities can differ between health providers and patients living with HIV [109]. While we did not collect information on the age of stakeholders, older adults living with HIV were part of this consultation.…”

Section: Discussionmentioning

confidence: 99%

Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC)

et al. 2020

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Background: People living with HIV are living longer, and can experience physical, mental and social health challenges associated with aging and multimorbidity. Rehabilitation is well positioned to address disability and maximize healthy aging. An international collaborative network, called the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), works to guide this emerging field. In this article, we report findings from CIHRRC's aim to identify emerging research priorities in HIV, aging and rehabilitation from the perspectives of people living with HIV, clinicians, researchers, representatives from community organizations and policy stakeholders. Methods: We conducted a multi-stakeholder multi-method international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations to identify research priorities in HIV, aging and rehabilitation. Stakeholders identified research priorities during a one-day International Forum comprised of presentations and facilitated discussion. We collated and analyzed data using content analytical techniques, resulting in a framework of research priorities. Results: Sixty-nine stakeholders from countries including Canada (n = 62; 90%), the United Kingdom (n = 5; 7%), United States (n = 1; 1%) and Australia (n = 1; 1%) attended the International Forum on HIV, Aging and Rehabilitation Research. Stakeholders represented community-based organizations (n = 20; 29%), academic institutions (n = 18; 26%), community or institutional healthcare organizations (n = 11; 16%), research or knowledge production organizations (n = 10; 14%), and organizations representing government or industry (n = 10; 14%). The Framework of Research Priorities in HIV, Aging and Rehabilitation includes seven research priorities: (1) nature, extent and impact of disability, concurrent health conditions and chronic inflammation with HIV; (2) prevalence, severity and impact of frailty; (3) community and social participation aging with HIV; (4) strategies for chronic disease management and healthy aging with HIV; (5) facilitators and barriers to access and engagement in, rehabilitation; (6) effectiveness of rehabilitation

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Section: Discussionmentioning

confidence: 99%

Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC)

et al. 2020

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“…As the software is configurable, validated PRO instruments can be selected based on clinical requirements (eg, a questionnaire for monitoring side effects or adherence to a new medication). The use of ePRO measures is becoming commonplace and acceptable with some caveats [ 27 ]. Our methods enabled us to integrate users’ opinions on the application design and increase the validity of the product [ 28 ] and its visual appeal.…”

Section: Discussionmentioning

confidence: 99%

“…In addition, some might express concern that variation in the mode of delivery might affect responses; however, research has found that when sampling protocols are followed, data equivalence can be achieved, although this research came with caveats [ 33 ]. The doctors also showed interest in using the software; however, further work will be necessary, as well as education and training on the utility of PRO data per se for patient care, as has been flagged by others [ 27 , 34 ]. A systematic review of mHealth adoption by Gagnon et al [ 35 ] found that utility and ease of use were two of the most important factors influencing uptake by health care professionals, and more recent reviews [ 30 ] reported organizational factors that must be considered.…”

Section: Discussionmentioning

confidence: 99%

Supporting Patient-Clinician Interaction in Chronic HIV Care: Design and Development of a Patient-Reported Outcomes Software Application

et al. 2021

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Background The consideration of health-related quality of life (HRQL) is a hallmark of best practice in HIV care. Information technology offers an opportunity to more closely engage patients with chronic HIV infection in their long-term management and support a focus on HRQL. However, the implementation of patient-reported outcome (PRO) measures, such as HRQL in routine care, is challenged by the need to synthesize data generated by questionnaires, the complexity of collecting data between patient visits, and the integration of results into clinical decision-making processes. Objective Our aim is to design and pilot-test a multimedia software platform to overcome these challenges and provide a vehicle to increase focus on HRQL issues in HIV management. Methods A multidisciplinary team in France and Australia conducted the study with 120 patients and 16 doctors contributing to the design and development of the software. We used agile development principles, user-centered design, and qualitative research methods to develop and pilot the software platform. We developed a prototype application to determine the acceptability of the software and piloted the final version with 41 Australian and 19 French residents using 2 validated electronic questionnaires, the Depression, Anxiety and Stress Scale-21 Items, and the Patient Reported Outcomes Quality of Life-HIV. Results Testing of the prototype demonstrated that patients wanted an application that was intuitive and without excessive instruction, so it felt effortless to use, as well as secure and discreet. Clinicians wanted the PRO data synthesized, presented clearly and succinctly, and clinically actionable. Safety concerns for patients and clinicians included confidentiality, and the potential for breakdown in communication if insufficient user training was not provided. The final product, piloted with patients from both countries, showed that most respondents found the application easy to use and comprehend. The usability testing survey administered found that older Australians had reduced scores for understanding the visual interface (P=.004) and finding the buttons organized (P=.02). Three-fourths of the respondents were concerned with confidentiality (P=.007), and this result was more prevalent in participants with higher anxiety and stress scores (P=.01), as measured by the Depression, Anxiety and Stress Scale-21 Items. These statistical associations were not observed in 15 French patients who completed the same questionnaire. Conclusions Digital applications in health care should be safe and fit for purpose. Our software was acceptable to patients and shows potential to overcome some barriers to the implementation of PROs in routine care. The design of the clinicians’ interface presents a solution to the problem of voluminous data, both synthesizing and providing a snapshot of longitudinal data. The next stage is to conduct a randomized controlled trial to determine whether patients experience increased satisfaction with care and whether doctors perceive that they deliver better clinical care without compromising efficiency.

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“…The use of PROMs has been associated with improvements in clinical care and in health outcomes in fields such as mental health and oncology, and there are unrealised opportunities for the HIV field to integrate PROMs into clinical care in ways that will benefit patients ( Fredericksen et al, 2020b ; Kall et al, 2020 ). This new instrument is particularly timely in light of growing interest in the objective of improving HRQoL in PLHIV ( Lazarus et al, 2016 ; Guaraldi et al, 2019 ).…”

Section: Discussionmentioning

confidence: 99%

“…In recent years, the World Health Organization (WHO) and many health systems increasingly have promoted person-centred care, which WHO describes as being “organised around the comprehensive needs of people rather than individual diseases” ( McCormack et al, 2015 ; World Health Organization (WHO), 2016 ). One means of promoting good communication about people’s healthcare needs is to ask patients to complete surveys known as patient-reported outcome measures (PROMs) ( Wheat et al, 2018 ; Fredericksen et al, 2020b ). There are validated PROMs focusing on numerous aspects of health and well-being, including generic PROMs designed for all patient populations as well as PROMS that reflect the concerns of patients with specific diseases and conditions including HIV.…”

Section: Introductionmentioning

confidence: 99%

Development of a Clinic Screening Tool to Identify Burdensome Health-Related Issues Affecting People Living With HIV in Spain

et al. 2021

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BackgroundNumerous health-related issues continue to undermine the health and health-related quality of life (HRQoL) of people living with HIV (PLHIV). We developed a clinic screening tool (CST-HIV) for the purpose of identifying these issues in routine specialist clinical care in Spain.MethodsWe used the following established instrument development procedures: (1) a literature review; (2) four focus group discussions (FGDs), two that convened 16 expert HIV care providers, and two that convened 15 PLHIV; (3) prioritisation, selection and definition of constructs (health-related issues) to include in the CST-HIV and drafting of initial item pool; and (4) a pilot study to analyse psychometric properties and validity of items and to determine which to retain in the final CST-HIV. The FGD interview scripts incorporated an exercise to prioritise the health-related issues perceived to have the greatest negative effect on HRQoL. The online questionnaire used for the pilot study included the pool of CST-HIV items and validated measures of each construct.ResultsWe identified 68 articles that reported on factors associated with the HRQoL of PLHIV. The most burdensome health-related issues identified in the FGDs related to stigma, socioeconomic vulnerability, sleep/fatigue, pain, body changes, emotional distress, and sexuality. Based on the literature review and FGD findings, we selected and defined the following constructs to include in the initial CST-HIV: anticipated stigma, emotional distress, sexuality, social support, material deprivation, sleep/fatigue, cognitive problems, and physical symptoms. Two researchers wrote six to eight items for each construct. Next, 18 experts rated 47 items based on their clarity, relevance, and representativeness. Pilot testing was carried out with 226 PLHIV in Spain. We retained 24 items based on empirical criteria that showed adequate psychometric properties. Confirmatory factor analysis confirmed the eight-factor structure with a good fit to the data (RMSEA = 0.035, AGFI = 0.97, CFI = 0.99). We found strong positive correlations between the instrument’s eight dimensions and validated measures of the same constructs. Likewise, we found negative associations between the dimensions of the CST-HIV and HRQoL.ConclusionThe CST-HIV is a promising tool for use in routine clinical care to efficiently identify and address health-related issues undermining the HRQoL of PLHIV.

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How Do Treatment Priorities Differ Between Patients in HIV Care and Their Providers? A Mixed-Methods Study

Cited by 12 publications

References 22 publications

Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC)

Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC)

Supporting Patient-Clinician Interaction in Chronic HIV Care: Design and Development of a Patient-Reported Outcomes Software Application

Development of a Clinic Screening Tool to Identify Burdensome Health-Related Issues Affecting People Living With HIV in Spain

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