scholarly journals Assessing the Content Validity of a New Patient-Reported Measure of Barriers to Antiretroviral Therapy Adherence for Electronic Administration in Routine HIV Care: Proposal for a Web-Based Delphi Study

10.2196/12836 ◽  
2019 ◽  
Vol 8 (8) ◽  
pp. e12836 ◽  
Author(s):  
Kim Engler ◽  
Sara Ahmed ◽  
David Lessard ◽  
Serge Vicente ◽  
Bertrand Lebouché

Background Adherence to lifesaving antiretroviral therapy (ART) for HIV infection remains a challenge for many patients. Routine screening for barriers to ART adherence could help make HIV care more patient-centered and prevent virologic rebound or failure. Our team is currently developing a new HIV-specific patient-reported outcome measure (PROM) of these barriers for use in Canada and France along with a digital app for its electronic administration. In our previous work, we developed the PROM’s multidimensional conceptual framework and generated 100 English items, which have been translated to French. Objective This study aims to use a Web-based Delphi to help validate and select the content of this new HIV-specific PROM, based on the perspective of anglophone and francophone patients and providers in Canada and France. Here, we present the proposal for this Delphi. Methods This modified Delphi will involve a diverse panel of patients (n=32) and providers (n=52) recruited especially from the 9 sites of the PROM development study (site locations in Canada: Montreal, Toronto, Vancouver; in France: Paris, Nantes, Clermont-Ferrand, Saint-Martin, Cayenne). Overall, 2 rounds of Web-based questionnaires will be conducted. The threshold for consensus is set at 60% and will determine which items are carried forward to the second round. Per item, 3 aspects will be rated: importance as a barrier to ART adherence, relevance for HIV care, and clarity. In both rounds, space will be available for free text comments. Overall comprehensiveness will be assessed in the second round. Results This study has undergone a methodological review by experts in patient-oriented research. It has received approval from a research ethics board of the McGill University Health Centre. It is financially supported, in part, by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research-Quebec Support Unit (M006). As of May 21, 2019, 15 people living with HIV and 25 providers completed the first round of the Delphi (24 from Canada and 16 from France). Conclusions To our knowledge, this is the first Delphi to seek consensus on the most relevant and clinically actionable barriers to ART adherence, collecting opinions on an extensive list of barriers. Drawing on a relatively large and diverse panel of HIV patients and providers, it essentially engages key stakeholders in decision making about the PROM’s final content, helping to ensure its utility and adoption. International Registered Report Identifier (IRRID) PRR1-10.2196/12836

2018 ◽  
Author(s):  
Kim Engler ◽  
Sara Ahmed ◽  
David Lessard ◽  
Serge Vicente ◽  
Bertrand Lebouché

BACKGROUND Adherence to lifesaving antiretroviral therapy (ART) for HIV infection remains a challenge for many patients. Routine screening for barriers to ART adherence could help make HIV care more patient-centered and prevent virologic rebound or failure. Our team is currently developing a new HIV-specific patient-reported outcome measure (PROM) of these barriers for use in Canada and France along with a digital app for its electronic administration. In our previous work, we developed the PROM’s multidimensional conceptual framework and generated 100 English items, which have been translated to French. OBJECTIVE This study aims to use a Web-based Delphi to help validate and select the content of this new HIV-specific PROM, based on the perspective of anglophone and francophone patients and providers in Canada and France. Here, we present the proposal for this Delphi. METHODS This modified Delphi will involve a diverse panel of patients (n=32) and providers (n=52) recruited especially from the 9 sites of the PROM development study (site locations in Canada: Montreal, Toronto, Vancouver; in France: Paris, Nantes, Clermont-Ferrand, Saint-Martin, Cayenne). Overall, 2 rounds of Web-based questionnaires will be conducted. The threshold for consensus is set at 60% and will determine which items are carried forward to the second round. Per item, 3 aspects will be rated: importance as a barrier to ART adherence, relevance for HIV care, and clarity. In both rounds, space will be available for free text comments. Overall comprehensiveness will be assessed in the second round. RESULTS This study has undergone a methodological review by experts in patient-oriented research. It has received approval from a research ethics board of the McGill University Health Centre. It is financially supported, in part, by the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research-Quebec Support Unit (M006). As of May 21, 2019, 15 people living with HIV and 25 providers completed the first round of the Delphi (24 from Canada and 16 from France). CONCLUSIONS To our knowledge, this is the first Delphi to seek consensus on the most relevant and clinically actionable barriers to ART adherence, collecting opinions on an extensive list of barriers. Drawing on a relatively large and diverse panel of HIV patients and providers, it essentially engages key stakeholders in decision making about the PROM’s final content, helping to ensure its utility and adoption. INTERNATIONAL REGISTERED REPOR PRR1-10.2196/12836


2017 ◽  
Vol 4 (4) ◽  
pp. e53 ◽  
Author(s):  
Abigail L Muldoon ◽  
Lisa M Kuhns ◽  
Julie Supple ◽  
Kristen C Jacobson ◽  
Robert Garofalo

Background People living with human immunodeficiency virus (PLHIV) are approximately twice as likely to be depressed compared with HIV-negative individuals. Depression is consistently associated with low antiretroviral therapy (ART) adherence, an important step within the HIV care continuum related to HIV disease progression and overall health. One factor that may have positive psychosocial benefits and promote ART adherence is dog ownership. Research indicates that dog ownership is associated with lower depression, and initial evidence suggests its positive impact on psychosocial outcomes for PLHIV. Objective The aim of our study was to expand the existing research by examining the relationship between current dog ownership and depression for a sample of PLHIV while controlling for demographic characteristics and other potential confounders. Methods Participants aged 18 years or older and who self-reported an HIV diagnosis were recruited via social media into When Dogs Heal, a cross-sectional Web-based survey to collect data among adult PLHIV. The research visit was conducted via a Web-based survey, and there was no in-person interaction with the participant. Primary outcome measures included demographic questions (age, race, ethnicity, gender, and sexual orientation), pet ownership (type of pet owned and current dog ownership), depression (Center for Epidemiologic Studies Depression Scale, 10 items), and resilience (Resilience Research Centre Adult Resilience Measure, 28 items). Results A total of 252 participants were enrolled into the study in January 2016, with a final analytic sample of 199 participants. Mean age was 49 years, 86.4% (172/199) of participants were male, and 80.4% (160/199) were white. Current dog ownership was prevalent among the sample (68.3%, 136/199). Bivariate analysis indicated that there was no significant relationship between depression and demographic characteristics (age, race, ethnicity, gender, and sexual orientation), with P>.05. The multivariate logistic regression, including age, race, ethnicity, gender, resilience, and current dog ownership, was significant, with P<.001. Of the 6 predictor variables, only 2 were statistically significant: dog ownership and resilience. Noncurrent dog owners had 3 times higher odds of depression in comparison with current dog owners: odds ratio 3.01; 95% CI 1.54-6.21. Conclusions Growing evidence suggests that dog ownership reduces the likelihood of depression and, therefore, may confer long-term health benefits on PLHIV. Future studies should explore whether dog-specific interventions are a feasible and efficacious intervention to improve outcomes among PLHIV.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Prudence Mbah ◽  
Michael Iroezindu ◽  
Allahna L. Esber ◽  
Nicole Dear ◽  
Domonique Reed ◽  
...  

Abstract Background Support groups for people living with HIV (PLWH) may improve HIV care adherence and outcomes. We assessed the impact of support group attendance on antiretroviral therapy (ART) adherence and viral suppression in four African countries. Methods The ongoing African Cohort Study (AFRICOS) enrolls participants at 12 clinics in Kenya, Uganda, Tanzania, and Nigeria. Self-reported attendance of any support group meetings, self-reported ART adherence, and HIV RNA are assessed every 6 months. Logistic regression models with generalized estimating equations were used to estimate adjusted odds ratios (aORs) and 95% confidence intervals (95% CIs) for support group attendance and other factors potentially associated with ART adherence and viral suppression. Results From January 2013 to December 1, 2019, 1959 ART-experienced PLWH were enrolled and 320 (16.3%) reported any support group attendance prior to enrollment. Complete ART adherence, with no missed doses in the last 30 days, was reported by 87.8% while 92.4% had viral suppression <1000copies/mL across all available visits. There was no association between support group attendance and ART adherence in unadjusted (OR 1.01, 95% CI 0.99–1.03) or adjusted analyses (aOR 1.00, 95% CI 0.98–1.02). Compared to PLWH who did not report support group attendance, those who did had similar odds of viral suppression in unadjusted (OR 0.99, 95% CI 0.978–1.01) and adjusted analyses (aOR 0.99, 95% CI 0.97–1.01). Conclusion Support group attendance was not associated with significantly improved ART adherence or viral suppression, although low support group uptake may have limited our ability to detect a statistically significant impact.


2017 ◽  
Author(s):  
Diana Barger ◽  
Olivier Leleux ◽  
Valérie Conte ◽  
Vincent Sapparrart ◽  
Marie Gapillout ◽  
...  

BACKGROUND Effective antiretroviral therapy has greatly reduced HIV-related morbidity and mortality, dramatically changing the demographics of the population of people living with HIV. The majority of people living with HIV in France are well cared for insofar as their HIV infection is concerned but remain at risk for age-associated comorbidities. Their long-term, potentially complex, and growing care needs make the routine, longitudinal assessment of health-related quality of life and other patient-reported outcomes of relevance in the current treatment era. OBJECTIVE We aim to describe the development of a Web-based electronic patient-reported outcomes system for people living with HIV linked to the ANRS CO3 Aquitaine cohort’s data capture and visualization system (ARPEGE) and designed to facilitate the electronic collection of patient-reported data and ultimately promote better patient-physician communication and quality of care (both patient satisfaction and health outcomes). METHODS Participants who meet the eligibility criteria will be invited to engage with the Web-based electronic patient-reported outcomes system and provided with the information necessary to create a personal patient account. They will then be able to access the electronic patient-reported outcomes system and complete a set of standardized validated questionnaires covering health-related quality of life (World Health Organization's Quality of Life Instrument in HIV infection, named WHOQOL-HIV BREF) and other patient-reported outcomes. The information provided via questionnaires will ultimately be presented in a summary format for clinicians, together with the patient’s HIV care history. RESULTS The prototype of the Web-based electronic patient-reported outcome system will be finalized and the first 2 formative research phases of the study (prototyping and usability testing) will be conducted from December 2017 to May 2018. We describe the sequential processes planned to ensure that the proposed electronic patient-reported outcome system is ready for formal pilot testing, referred to herein as phases 1a and 1b. We also describe the planned pilot-testing designed to evaluate the acceptability and use of the system from the patient’s perspective (phase 2). CONCLUSIONS As the underlying information technology solution, ARPEGE, has being developed in-house, should the feasibility study presented here yield promising results, the panel of services provided via the proposed portal could ultimately be expanded and used to experiment with health-promoting interventions in aging people living with HIV in hospital-based care or adapted for use in other patient populations. CLINICALTRIAL ClinicalTrials.gov NCT03296202; https://clinicaltrials.gov/ct2/show/NCT03296202 (Archived by WebCite at http://www.webcitation.org/6zgOBArps) REGISTERED REPORT IDENTIFIER RR1-10.2196/9439


2019 ◽  
Author(s):  
Diana Barger ◽  
Olivier Leleux ◽  
Valérie Conte ◽  
Vincent Sapparrart ◽  
Marie Gapillout ◽  
...  

BACKGROUND Collecting patient-reported outcomes can be of great value for both research and chronic diseases management. We endeavoured to develop a new facet of the ANRS CO3 Aquitaine cohort study’s web-based data capture and visualization system (APPEGE ® 2.0) for the collection of electronic patient-reported outcomes in people living with HIV care for in Aquitaine, France. OBJECTIVE Given the novelty of the proposed data collection method for our setting and specific characteristics of the target population, we sought to evaluate the initial usability of a prototype of an electronic patient-reported outcomes (ePRO) information system (ARPEGE® 2.0). METHODS Two successive rounds of empirical, task-based, usability testing were conducted, involving eight “experts” and then six people living with HIV. Evaluators provided written feedback during round 1 and oral feedback during round 2. Evaluators who completed the full set of tasks responded to the Systems Usability Scale. We assessed changes in SUS scores between rounds and concluded usability testing when SUS scores reached a ceiling effect, defining “good” usability a priori as a usability score of 70. RESULTS Insights were generated regarding the visibility of system status and the match between the system and the real world that improved the solution’s usability markedly. Experts reported mean SUS scores of 65 +- 18.87 and patients reported mean SUS scores of 85 +- 5.4 (p=0.032). CONCLUSIONS Software modifications, informed by successive rounds of usability testing, resulted in sufficient gains in usability to undertake piloting. Usability testing also prompted us to find the appropriate balance between optimal security and ease of use. CLINICALTRIAL https://clinicaltrials.gov/ct2/show/NCT03296202 (Archived by WebCite at http://www.webcitation.org/6zgOBArps)


2017 ◽  
Author(s):  
Abigail L Muldoon ◽  
Lisa M Kuhns ◽  
Julie Supple ◽  
Kristen C Jacobson ◽  
Robert Garofalo

BACKGROUND People living with human immunodeficiency virus (PLHIV) are approximately twice as likely to be depressed compared with HIV-negative individuals. Depression is consistently associated with low antiretroviral therapy (ART) adherence, an important step within the HIV care continuum related to HIV disease progression and overall health. One factor that may have positive psychosocial benefits and promote ART adherence is dog ownership. Research indicates that dog ownership is associated with lower depression, and initial evidence suggests its positive impact on psychosocial outcomes for PLHIV. OBJECTIVE The aim of our study was to expand the existing research by examining the relationship between current dog ownership and depression for a sample of PLHIV while controlling for demographic characteristics and other potential confounders. METHODS Participants aged 18 years or older and who self-reported an HIV diagnosis were recruited via social media into When Dogs Heal, a cross-sectional Web-based survey to collect data among adult PLHIV. The research visit was conducted via a Web-based survey, and there was no in-person interaction with the participant. Primary outcome measures included demographic questions (age, race, ethnicity, gender, and sexual orientation), pet ownership (type of pet owned and current dog ownership), depression (Center for Epidemiologic Studies Depression Scale, 10 items), and resilience (Resilience Research Centre Adult Resilience Measure, 28 items). RESULTS A total of 252 participants were enrolled into the study in January 2016, with a final analytic sample of 199 participants. Mean age was 49 years, 86.4% (172/199) of participants were male, and 80.4% (160/199) were white. Current dog ownership was prevalent among the sample (68.3%, 136/199). Bivariate analysis indicated that there was no significant relationship between depression and demographic characteristics (age, race, ethnicity, gender, and sexual orientation), with P>.05. The multivariate logistic regression, including age, race, ethnicity, gender, resilience, and current dog ownership, was significant, with P<.001. Of the 6 predictor variables, only 2 were statistically significant: dog ownership and resilience. Noncurrent dog owners had 3 times higher odds of depression in comparison with current dog owners: odds ratio 3.01; 95% CI 1.54-6.21. CONCLUSIONS Growing evidence suggests that dog ownership reduces the likelihood of depression and, therefore, may confer long-term health benefits on PLHIV. Future studies should explore whether dog-specific interventions are a feasible and efficacious intervention to improve outcomes among PLHIV.


Author(s):  
Behnam Farhoudi ◽  
Seyed Ahmad Seyedalinaghi ◽  
Masoud Jafarinasab ◽  
Seyed Mohammad Ghavam ◽  
Omid Dadras ◽  
...  

Background: Antiretroviral medications have improved the survival and life quality of people living with HIV and turned HIV into a chronic controllable disease. However, the success of HIV treatment depends on many factors; the patient adherence is one the most important indicators which. In this study, we explored the potential barriers to an effective adherence antiretroviral therapy (ART) among the HIV-positive prisoners of Ghezelhesar prison, Iran. Methods: To explore and identify the barriers toward ART adherence, a focus group discussion was held with six prisoners eligible for ART but rejected to be treated or did not retain on ART. The prisoners were recruited through purposive sampling method. All the words, behaviors and even body languages were precisely recorded and analyzed to reach the final results. Results: The most reported obstacles toward ART adherence were the lack of trust in effectiveness of medications and drug complications. Other reasons were inadequate nutrition, lack of amenities, social stigma, lack of economic and psychological support, misbehavior of prison staff and inadequate methadone prescription for those with opium addiction. Conclusion: Due to the results and the fact that adequate Methadone prescription for opium addiction, improving life quality and receiving emotional and medical support from staff could improve adherence to HIV medication in prisoners, comprehensive education of prisoners about their health condition along with staff education may improve the life condition of HIV infected prisoners and may cause dramatic improvement in ART adherence and prisoners health.


BMJ Open ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. e049824
Author(s):  
Andreas D Haas ◽  
Cordelia Kunzekwenyika ◽  
Stefanie Hossmann ◽  
Josphat Manzero ◽  
Janneke van Dijk ◽  
...  

ObjectivesTo examine the proportion of people living with HIV who screen positive for common mental disorders (CMD) and the associations between CMD and self-reported adherence to antiretroviral therapy (ART).SettingSixteen government-funded health facilities in the rural Bikita district of Zimbabwe.DesignCross-sectional study.ParticipantsHIV-positive non-pregnant adults, aged 18 years or older, who lived in Bikita district and had received ART for at least 6 months.Outcome measuresThe primary outcome was the proportion of participants screening positive for CMD defined as a Shona Symptoms Questionnaire score of 9 or greater. Secondary outcomes were the proportion of participants reporting suicidal ideation, perceptual symptoms and suboptimal ART adherence and adjusted prevalence ratios (aPR) for factors associated with CMD, suicidal ideation, perceptual symptoms and suboptimal ART adherence.ResultsOut of 3480 adults, 18.8% (95% CI 14.8% to 23.7%) screened positive for CMD, 2.7% (95% CI 1.5% to 4.7%) reported suicidal ideations, and 1.5% (95% CI 0.9% to 2.6%) reported perceptual symptoms. Positive CMD screens were more common in women (aPR 1.67, 95% CI 1.19 to 2.35) than in men and were more common in adults aged 40–49 years (aPR 1.47, 95% CI 1.16 to 1.85) or aged 50–59 years (aPR 1.51, 95% CI 1.05 to 2.17) than in those 60 years or older. Positive CMD screen was associated with suboptimal adherence (aPR 1.53; 95% CI 1.37 to 1.70).ConclusionsA substantial proportion of people living with HIV in rural Zimbabwe are affected by CMD. There is a need to integrate mental health services and HIV programmes in rural Zimbabwe.Trial registration numberNCT03704805.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Ilaria Corazza ◽  
Kendall Jamieson Gilmore ◽  
Francesca Menegazzo ◽  
Valts Abols

Abstract Background Patient Reported Experience Measures (PREMs) are recognized as an important indicator of high quality care and person-centeredness. PREMs are increasingly adopted for paediatric care, but there is little published evidence on how to administer, collect, and report paediatric PREMs at scale. Methods This paper describes the development of a PREMs questionnaire and administration system for the Meyer Children’s University Hospital in Florence (Meyer) and the Children’s Clinical University Hospital in Riga (CCUH). The system continuously recruits participants into the electronic administration model, with surveys completed by caregivers or adolescents at their convenience, post-discharge. We analyse 1661 responses from Meyer and 6585 from CCUH, collected from 1st December 2018 to 21st January 2020. Quantitative and qualitative experience analyses are included, using Pearson chi-square tests, Fisher’s exact tests and narrative evidence from free text responses. Results The large populations reached in both countries suggest the continuous, digital collection of paediatric PREMs described is feasible for collecting paediatric PREMs at scale. Overall response rates were 59% in Meyer and 45% in CCUH. There was very low variation in mean scores between the hospitals, with greater clustering of Likert scores around the mean in CCUH and a wider spread in Meyer for a number of items. The significant majority of responses represent the carers’ point of view or the perspective of children and adolescents expressed through proxy reporting by carers. Conclusions Very similar reported scores may reflect broadly shared preferences among children, adolescents and carers in the two countries, and the ability of both hospitals in this study to meet their expectations. The model has several interesting features: inclusion of a narrative element; electronic administration and completion after discharge from hospital, with high completion rates and easy data management; access for staff and researchers through an online platform, with real time analysis and visualization; dual implementation in two sites in different settings, with comparison and shared learning. These bring new opportunities for the utilization of PREMs for more person-centered and better quality care, although further research is needed in order to access direct reporting by children and adolescents.


2021 ◽  
Vol 7 (7) ◽  
pp. 428-439
Author(s):  
Ernest Boateng ◽  
◽  
Dr. Emmanuel Kumah ◽  

At the end of 2018, HIV remains a significant worldwide medical problem and has claimed over 32 million lives. Around 37.9 million individuals were living with the condition at the end of 2018. The pervasiveness of HIV among African adults (15–49 years) was 3–multiple times higher in 2018. When properly followed, ART has been shown to slow the progression of HIV and enable HIV-positive people to live longer, more productive lives. A treatment regimen of at least three antiretroviral (ARV) medications is typically used. Adherence to antiretroviral therapy (ART) is insufficient. Therefore, the study aimed to assess the ART adherence among PLHIV in the Atwima Nwabiagya Municipality to suggest efficient and effective strategies to maximize adherence. A cross-sectional study was employed using quantitative methods to assess the associations between ART adherence and socio-demographic and socioeconomic factors. The site for this study was the ART Clinic at Nkawie Government Hospital, with a study population of all AIDS patients at the ART Clinic. The 450 PLHIV sample included females (n = 323, or 71.8%), while the males were 127 (28.2). Of the 450 participants, 215 (47.8%) reported adherence of 95%. The mean adherence index was 91.3%. Again, the study showed that those who took a single (137; 30.4%) ART dose was more comfortable than those who took multiple doses (313; 69.6%). Discomfort with the ART regimen, financial restrictions, forgetting to take medicine, lack of family support, social stigma, and antiretroviral therapy side effects were all major barriers to adherence in this study. Adherence, as stated by the participants, appeared to be below. Non-adherence is linked to both medical and behavioural factors, such as pausing ART or feeling ART discomfort. Atwima Nwabiagya Municipality, adherence to antiretroviral therapy is low. Before starting antiretroviral treatment, all patients can receive intensive adherence counselling.


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