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Web-Based Data Collection for Older Adults Living With HIV in a Clinical Research Setting: Pilot Observational Study.

ABSTRACT: BACKGROUND:Longitudinal follow-up of older persons living with HIV is essential for the ascertainment of aging-related clinical and behavioral outcomes, and self-administered questionnaires are necessary for collecting behavioral information in research involving persons living with HIV. Web-based self-reported data collection results in higher data quality than paper-and-pencil questionnaires in a wide range of populations. The option of remote web-based surveys may also increase retention in long-term research studies. However, the acceptability and feasibility of web-based data collection in clinical research involving older persons living with HIV have never been studied. OBJECTIVE:This study aims to assess the acceptability and feasibility of a web-based survey to collect information on sexual, substance use, and physical activity behaviors; compare the data quality of the web-based survey with that of a paper-and-pencil questionnaire; and summarize web-based survey metrics. METHODS:This pilot study took place within the AIDS Clinical Trials Group A5322 study, a longitudinal cohort of men and women living with HIV (aged ?40 years), followed at 32 clinical sites in the United States and Puerto Rico. A total of 4 sites participated in this study. A web-based survey was created using self-administered questionnaires typically completed in A5322 via paper and pencil. Pilot study participants completed these questionnaires via web-based survey at one research visit in lieu of paper-and-pencil administration. Two questions were added to assess feasibility, defined as participants' perception of the ease of web-based survey completion (very hard, hard, easy, very easy), and their preferred format (computer or tablet, paper and pencil, no preference) for completing the questions in the future (acceptability). Feasibility and acceptability were summarized overall and by demographic and clinical characteristics; the proportion of evaluable data by web-based survey versus previously administered paper-and-pencil questionnaires (data quality) was compared for each question. RESULTS:Acceptability and feasibility were high overall: 50.0% (79/158) preferred computer or tablet, 38.0% (60/158) reported no preference, and 12.0% (19/158) preferred paper and pencil; 93.0% (147/158) reported survey completion easy or very easy. Older age was associated with lower odds of preferring computer or tablet to paper and pencil (odds ratio per 1-year increase in age: 0.91, 95% CI 0.85-0.98). Individuals who found the survey hard or very hard had a lower median neurocognitive test score than those who found it easy or very easy. Data quality with web-based survey administration was similar to or higher than that with paper-and-pencil administration for most questions. CONCLUSIONS:Web-based survey administration was acceptable and feasible in this cohort of older adults living with HIV, and data quality was high. Web-based surveys can be a useful tool for valid data collection and can potentially improve retention in long-term follow-up studies.

SUBMITTER: Tassiopoulos K

PROVIDER: S-EPMC7688395 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Web-Based Data Collection for Older Adults Living With HIV in a Clinical Research Setting: Pilot Observational Study.

Tassiopoulos Katherine K Roberts-Toler Carla C Fichtenbaum Carl J CJ Koletar Susan L SL

Journal of medical Internet research 20201111 11

<h4>Background</h4>Longitudinal follow-up of older persons living with HIV is essential for the ascertainment of aging-related clinical and behavioral outcomes, and self-administered questionnaires are necessary for collecting behavioral information in research involving persons living with HIV. Web-based self-reported data collection results in higher data quality than paper-and-pencil questionnaires in a wide range of populations. The option of remote web-based surveys may also increase retent ...[more]

PMID: 33174854

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Project description:BackgroundRetention, defined as continuous engagement in care, is an important indicator for quality of healthcare services. To achieve UNAIDS 90-90-90 targets, emphasis on retention as a predictor of viral suppression in patients initiated on ART is vital. Using routinely collected clinical data, the authors sought to determine the effect of age on retention post ART initiation.MethodsDe-identified electronic data for 32965 HIV-infected persons aged ≥15 years at enrolment into the Academic Model Providing Access to Healthcare program between January 2008 and December 2014 were analyzed. Follow-up time was defined from the date of ART initiation until either loss to follow-up or death or close of the database (September 2016) was observed. Proportions were compared using Pearson's Chi-square test and medians using Mann-Whitney U test. Logistic regression model was used to assess differences in ART initiation between groups, adjusting for baseline characteristics. Cox proportional hazards model adjusting for baseline characteristics and antiretroviral therapy (ART) status was used to compute hazard ratios. Kaplan-Meier survival function was used to compare retention on ART at 12, 24, and 36 months post ART initiation.ResultsOf the total sample, 3924 (12.0%) were aged ≥50 years at enrolment. The median (IQR) age of young adults and older adults were 32.5 (26.6, 36.9) and 54.9 (51.7, 59.9) respectively. ART initiation rates were 70.5% among older adults and 68.2% among younger adults. Retention rates in care at 12, 24 and 36 months post ART initiation were 73.9% (95% CL: 72.2, 75.5), 62.9% (95% CL: 61.0, 64.7) and 55.4% (95% CL: 53.5, 57.3) among older adults compared to 69.8% (95% CL: 69.1, 70.4), 58.1% (95% CL: 57.4, 58.8) and 49.3% (95% CL: 48.6, 50.0) among younger adults (p <0.001). A higher proportion of older adults were retained in HIV care post ART initiation compared to younger adults, Adjusted Hazard Ratio (AHR): 0.83 (95% CI: 0.78, 0.87) though they were more likely to die, AHR: 1.35 (95% CI: 1.19, 1.52).ConclusionA higher proportion of older adults are initiated on ART and have better retention in care at 12, 24 and 36 months post ART initiation than younger adults. However, older adults have a higher all-cause mortality rate, perhaps partially driven by late presentation to care. Enhanced outreach and care to this group is imperative to improve their outcomes.

Project description:People living with HIV (PLWH) have increasingly longer life spans. This age group faces different challenges than younger PLWH, which may include increased stress and social isolation. The purpose of this study was to determine whether the age and sex of PLWH are associated with measures of physiologic stress, perceived stress, and social isolation. In this cross-sectional study, we enrolled 102 PLWH equally into four groups divided by age (younger or older than 50 years) and gender. Participants completed well-validated survey measurements of stress and isolation, and their heart rate variability over 60 minutes was measured by Holter monitor. The mean (SD) Perceived Stress Scale score was 17.4 (6.94), mean Visual Analog Stress Scale score was 3.51 (2.79), and mean Hawthorne Friendship Scale score, a measure of social isolation, was 17.03 (4.84). Mean heart rate variability expressed as the SD of successive N-N intervals was 65.47 (31.16) msec. In multivariable regression models that controlled for selected demographic variables, there was no relationship between the Perceived Stress Scale and age (coefficient = -0.09, p =-0.23) or female gender (coefficient = -0.12, p = 0.93); however, there was a modest relationship between female gender and stress using the Visual Analog Stress Scale (coefficient = 1.24, p = 0.05). Perceived Stress was negatively associated with the Hawthorne Friendship score (coefficient = -0.34, p = 0.05). Hawthorne Friendship score was positively associated with younger age (coefficient = 0.11, p = 0.02). Age was the only independent predictor of physiologic stress as measured by heart rate variability (coefficient = -1.3, p < 0.01). Our findings suggest that younger PLWH may experience more social isolation; however, age-related changes in heart rate variability do not appear to be related to perceived stress or social isolation. Future longitudinal research is required to more thoroughly understand this relationship and its impact on the health of PLWH.

Project description:Our aim was to develop evidence-informed recommendations for rehabilitation with older adults living with HIV.We conducted a knowledge synthesis, combining research evidence specific to HIV, rehabilitation and ageing, with evidence on rehabilitation interventions for common comorbidities experienced by older adults with HIV.We included highly relevant HIV-specific research addressing rehabilitation and ageing (stream A) and high-quality evidence on the effectiveness of rehabilitation interventions for common comorbidities experienced by older adults ageing with HIV (stream B). We extracted and synthesised relevant data from the evidence to draft evidence-informed recommendations for rehabilitation. Draft recommendations were refined based on people living with HIV (PLHIV) and clinician experience, values and preferences, reviewed by an interprofessional team for Grading of Recommendations Assessment, Development, and Evaluation (GRADE) (quality) rating and revision and then circulated to PLHIV and clinicians for external endorsement and final refinement. We then devised overarching recommendations to broadly guide rehabilitation with older adults living with HIV.This synthesis yielded 8 overarching and 52 specific recommendations. Thirty-six specific recommendations were derived from 108 moderate-level or high-level research articles (meta-analyses and systematic reviews) that described the effectiveness of rehabilitation interventions for comorbidities that may be experienced by older adults with HIV. Recommendations addressed rehabilitation interventions across eight health conditions: bone and joint disorders, cancer, stroke, cardiovascular disease, mental health challenges, cognitive impairments, chronic obstructive pulmonary disease and diabetes. Sixteen specific recommendations were derived from 42 research articles specific to rehabilitation with older adults with HIV. The quality of evidence from which these recommendations were derived was either low or very low, consisting primarily of narrative reviews or descriptive studies with small sample sizes. Recommendations addressed approaches to rehabilitation assessment and interventions, and contextual factors to consider for rehabilitation with older adults living with HIV.These evidence-informed recommendations provide a guide for rehabilitation with older adults living with HIV.

Project description:BackgroundFinding HIV infected persons and engaging them in care is crucial in achieving UNAIDS 90-90-90 targets; diagnosing 90% of those infected with HIV, initiating 90% of the diagnosed on ART and achieving viral suppression in 90% of those on ART. To achieve the first target, no person should be left behind in their access to HIV testing services. In Kenya, HIV prevention and testing services give less emphasis on older adults. This article describes HIV testing experiences of older adults living with HIV and how their age shaped their interaction and treatment received during HIV testing and diagnosis.MethodsWe conducted a qualitative study in two HIV clinics (rural and urban) in western Kenya, and recruited 57 HIV infected persons aged ≥50 years. We conducted in depth interviews (IDIs) with 25 participants and 4 focus group discussions (FGDs) with a total of 32 participants and audio recorded all the sessions. Participants recruited were aged between 54 and 79 years with 43% being females. We transcribed audio records and analyzed the data using thematic content analysis method.ResultsOlder persons' experiences with HIV testing depended on where they tested (hospital or community setting); whether they actively sought the testing or not; and the age and gender of the healthcare provider who conducted the test. Participants expressed concerns with ageist discrimination when actively seeking HIV care testing services in hospital settings, characterized by providers' reluctance or refusal to test. The testing and counseling sessions were described as short and hurried within the hospital settings, whereas the interactions with service providers in home-based testing were experienced as appropriate and supportive. Participants in this study expressed preference for healthcare providers who were older and of similar gender.ConclusionHIV testing services are still not tailored to target older adults' needs in our setting resulting in late diagnosis among older persons. We argue that a scale-up of community level testing services that provide adequate testing and counselling time and actively reach out to older adults is key to attaining the UNAIDS targets of having 90% of PLWH know their status.

Dataset Information

Web-Based Data Collection for Older Adults Living With HIV in a Clinical Research Setting: Pilot Observational Study.

Publications

Web-Based Data Collection for Older Adults Living With HIV in a Clinical Research Setting: Pilot Observational Study.

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