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Disability Measured in PLWH in London: 39.5%
Severe Disability; 70.5% Moderate Disability
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Download the PDF - Prevalence, severity, and risk factors of disability among adults living with HIV accessing routine outpatient HIV care in London, United Kingdom (UK): A cross- sectional self-report study
Prevalence, severity, and risk factors of disability among adults living with HIV accessing routine outpatient HIV care in London, United Kingdom (UK): A cross- sectional self-report study -
Plos One May 2022 - Darren A. Brown,, Kelly K. O'Brien, Richard Harding, Philip M. Sedgwick7, Mark Nelson8,9, Marta Boffito, Agnieszka Lewko
Collectively the physical, mental and social health challenges experienced can be conceptualised as disability. Disability can however be broadly defined as any physical, cognitive, mental or emotional impairments, difficulty with day-to-day activities, challenges to social inclusion, or uncertainty, that can be episodic in nature, whereby disability reflects the interaction between a person's body and the society in which they live [2, 34].
We conducted a quantitative cross-sectional study, using self-report questionnaires, to measure prevalence and severity of disability and examine potential risk factors of disability, among adults living with HIV accessing routine in-person outpatient HIV care in London, UK
Risk factors as predictors of severe or moderate disability include age >50, communities of color, diagnosis of HIV with CD4 <350, unemployed, less than degree education, see Table 3 below.
Of 201 participants, 176 (87.6%) identified as men, median age 47 years, and 194 (96.5%) virologically suppressed. Severe disability prevalence was 39.5% (n = 79/201), 95% CI [32.5%, 46.4%]. Moderate disability prevalence was 70.5% (n = 141/200), 95% CI [64.2%, 76.8%]. Uncertainty was the most severe HDQ disability domain. Late HIV diagnosis was a risk factor for severe disability [Odds Ratio (OR) 2.71; CI 1.25, 5.87].
Social determinants of health, economic inactivity [OR 2.79; CI 1.08, 7.21] and receiving benefits [OR 2.87; CI 1.05, 7.83], were risk factors for "severe" disability.
Economic inactivity [OR 3.14; CI 1.00, 9.98] was a risk factor for "moderate" disability.
Economic inactivity, receiving benefits, and having no fixed abode were risk factors (P≤0.05) for higher HDQ severity scores in physical, mental and emotional, difficulty with day-to-day activities, and challenges to social participation domains.
Personal factors, identifying as a woman and being aged <50 years, were risk factors (P≤0.05) for higher HDQ severity scores in mental and emotional, uncertainty, and challenges with social participation domains.
Conclusions
People living with well-controlled HIV in London UK experienced multi-dimensional and episodic disability. Results help to better understand the prevalence, severity, and risk factors of disability experienced by adults living with HIV, identify areas to target interventions, and optimise health and functioning.
People living with well-controlled HIV of any age, attending outpatient HIV care in London UK, experience and self-report multi-dimensional and episodic disability. Initial prevalence estimates of severe (39.5%) and moderate disability (70.5%), suggested disability is commonly experienced among adults accessing routine HIV care, with uncertainty the most severe domain of disability experienced. Risk factors of disability included gender, age, employment, housing, benefits, and late HIV diagnosis among people living with HIV in the UK. Results help to better understand the prevalence, severity, and risk factors of disability experienced among adults living with HIV, and identify areas in which to target interventions to reduce disability and improve optimal health and function beyond viral suppression for adults living with HIV.
Prevalence of moderate disability among people living with HIV was 70.5%
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0267271
Physical symptoms and impairments mean severity HDQ domain scores were higher among participants who identified as women (95% CI: 1.22, 18.41; P = 0.025), were economically inactive (4.51, 15.54; P<0.001), of no fixed abode (3.13, 24.86; P = 0.012), received benefits (1.88, 13.52; P = 0.010), and received rehabilitation in past 12-months (30.20, 42.89; P<0.001).
Cognitive symptoms and impairments mean severity HDQ domain scores were higher among participants who were economically inactive (4.88, 21.91; P = 0.002), received benefits (3.73, 21.72; P = 0.006), and received rehabilitation (29.45, 49.05; P = 0.007) in past 12-months.
Mental and emotional health symptoms and impairments mean severity HDQ domain scores were higher among participants aged <50 years (-14.09, -1.23; P = 0.020), who identified as women (1.85, 25.72; P = 0.024), were economically inactive (7.76, 23.07; P<0.001), of no fixed abode (7.37, 37.54; P = 0.004), and received benefits (0.19, 16.36; P = 0.045).
Uncertainty mean severity HDQ domain scores were higher among participants aged <50 years (-13.41, -0.79; P = 0.027), who identified as women (8.52, 31.96; P = 0.001), were economically inactive (0.25, 15.29; P = 0.043), of no fixed abode (2.26, 31.89; P = 0.024), and received rehabilitation the past 12-months (45.82, 63.12; P = 0.004).
Difficulties with day-to-day activities mean severity HDQ domain scores were higher among participants who were economically inactive (9.92, 22.01; P<0.001), of no fixed abode (0.02, 23.86; P = 0.050), received benefits (4.19,16.97; P = 0.001), and received rehabilitation the past 12-months (28.65, 42.57; P<0.001).
Challenges to taking part in social and community life mean severity HDQ domain scores were higher among participants who were aged < 50 years (-11.08, -0.13; P = 0.045), identified as women (4.28, 24.62; P = 0.005), were economically inactive (6.25, 19.30; P<0.001), of no fixed abode (3.23, 28.95; P = 0.014), received benefits (1.63, 15.41; P = 0.015), and received rehabilitation in the past 12-months (35.47, 50.49; P = 0.001). Multivariate associations between potential risk factors and mean HDQ domain severity scores are shown in Table 4.
Measuring disability is a critical component of care as people live longer with HIV [35] to determine the prevalence and impact of disability [36], prevent discrimination, monitor inequalities, identify service needs and address barriers to equal participation in society [37].
As people live longer with chronic HIV, they are susceptible to health conditions arising from the underlying infection, potential side effects of treatments, and ageing [10], resulting in increasingly more prevalent multi-morbidity [1, 11]. Common concurrent health conditions include cardiovascular disease [12], diabetes [13], bone and joint disorders [14, 15], neurocognitive disorders [16, 17], chronic pain [18], mental health conditions [19], cancer [20], and frailty [21]. People living with HIV can also experience additional challenges of stigma, ageism, income insecurity, and lack of social support, which may impact or intersect with issues of living and ageing with HIV [22-25]. Collectively the physical, mental and social health challenges experienced can be conceptualised as disability [2].
Background: The study objectives were to measure disability prevalence and severity, and examine disability risk factors, among adults living with HIV in London, United Kingdom (UK). Patients and the public were involved throughout the research study design and management. Sources of Patient and Public Involvement (PPI) included host organisation "patient champion", host organisation directorate peer review, and Positively UK; a UK based charity for people living with HIV.
Methods: Self-reported questionnaires were administered: World Health Organization Disability Assessment Schedule 2.0 (WHODAS), HIV Disability Questionnaire (HDQ), Equality Act disability definition (EADD), and demographic questionnaire. We calculated proportion (95% Confidence Interval; CI) of "severe" and "moderate" disability measured using EADD and WHODAS scores ≥2 respectively. We measured disability severity with HDQ domain severity scores. We used demographic questionnaire responses to assess risk factors of "severe" and "moderate" disability using logistic regression analysis, and HDQ severity domain scores using linear regression analysis.
Participant characteristics are shown in Table 1. The majority identified as men (87.6%), of gay/lesbian sexual orientation (78.6%), and white ethnicity (72.7%). The median age was 47 years, with 41.0% aged ≥50 years. The sample were mostly living with well controlled HIV with all participants taking antiretroviral therapy with 96.5% achieving HIV viral suppression. Median number of years since HIV diagnosis was 11 years (25-75th percentile: 5-21). Half were diagnosed with HIV late (51.7%). Participants reported living with a median of two concurrent health conditions in addition to HIV, with most self-reporting general health status "very good" or "good". Participants were mostly economically active, living in owned or private/social rented accommodation, living alone, and half achieving degree level qualifications. The majority did not receive or provide care, receive benefits/tax credits, or receive rehabilitation in past 12-months.
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