BACKGROUND: The World Health Organization’s definition of health focuses on health-related quality of life in all domains, not just the “absence of disease or infirmity”. We investigated various treatment challenges among People living with HIV (PLHIV) in Portugal.METHODS: We analyzed data for n=60 adult PLHIV with a confirmed diagnosis and on anti-retroviral therapy (ART) who participated in the 2019 Positive Perspectives Survey. Descriptive analyses were performed using R Version 3.6.1.RESULTS: Most participants were virally suppressed (97%), male (67%); <50 years (51%); and had ≥1 non-HIV comorbidity (70%). Overall, 15% reported trouble swallowing pills, 35% experienced ART side effects, 22% felt daily oral ART limited their life, 25% were stressed by their dosing schedule, 33% said daily oral dosing cued bad memories, while 63% said daily dosing reminded them of their HIV. These challenges were associated with treatment-avoidance behaviors; PLHIV reported missing ≥1 ART dose within the past month because of food requirements 27%, side effects 12%, concerns about long-term ART impacts 10%, and problems swallowing 5%. Overall, 73% were open to taking long-acting, nondaily ART if they remained virologically controlled. Only 35% overall perceived no communication barriers with their HCPs; these individuals had higher prevalence of optimal physical (86% vs. 49%, p=0.011) and mental health (86% vs. 36%, p<0.001) than those with a perceived barrier.CONCLUSION: For some PLHIV, taking pills daily was linked with diverse emotional challenges, including pill fatigue and anxiety. Clinicians should consider patient preferences when prescribing ART and engage PLHIV in treatment decisions.
There are three main types of accessible language documents that medical writers and medical publications professionals may work on. These are regulatory lay summaries, publication-associated plain language summaries (PLS), and standalone plain language summaries of publications (PLSPs). Although these document types have different purposes and audiences, they are often confused because of the similar names. Here, we outline the main differences between the three document types and present the different names used to refer to lay summaries across 58 pharmaceutical companies, totalling 22 names. We also show examples of the different literacy levels used in lay summaries and publication-associated PLS. Medical publications professionals need to be aware of the differences between these accessible language document types and the importance of being precise when discussing these. Standardisation of terminology could potentially help to avoid confusion.
INTRODUCTION Daily antiretroviral treatment (ART) can be challenging for some people living with HIV (PLHIV). Longacting injectable regimens (LAR) allow for non-daily dosing. We explored unmet needs associated with daily ART dosing and examined PLHIV's preference for LAR in the Netherlands, a country that has made enormous strides in improving HIV care; and 11 other European countries. METHODS Data were from the second wave of the Positive Perspectives survey of PLHIV on ART conducted in 2019 (Europe-wide, n=969 including Netherlands, n=51). Within four domains of ART-related challenges (emotional, psychosocial/stigma, physical, adherence), we used multivariable logistic regression to examine the relationship between the extent of unmet needs (tertiles) and LAR preference (p<0.05). RESULTS In pooled Europe-wide analysis, within each domain of unmet need, LAR preference increased with an increasing number of challenges. By the extent of ART-related emotional challenges, LAR preference odds were 1.76 (95% CI: 1.45-2.13) among those with a 'moderate' burden, and 4.05 (95% CI: 3.26-5.03) among those with a 'high' burden, compared to those with a 'low' burden. For anticipated stigma, LAR preference odds were 1.50 (95% CI: 1.11-2.04) for moderate and 2.33 (95% CI: 1.68-3.21) for high versus low. For adherence barriers, LAR preference odds were 1.53 (95% CI: 1.14-2.04) and 2.06 (95% CI: 1.45-2.91) among those with moderate and high levels of adherence barriers, respectively, compared to low. LAR preference odds were 1.71 (95% CI: 1.25-2.34) higher among PLHIV with 2+ non-HIV comorbidities versus HIV only, and 1.57 (95% CI: 1.12-2.34) higher among those on 2+ co-medications versus on ART exclusively. Of Dutch participants, 58.8% (30/51) indicated LAR preference, and 32.2% ranked LAR as the single most important ART improvement. Regarding daily oral ART dosing, 11.8% (6/51) of Dutch participants felt that it limited their daily life; 3.9% (2/51) were stressed by it, and 35.3% (18/51) said that it reminded them of HIV. Furthermore, 23.5% (12/51) hid/disguised their HIV medication to prevent unwanted disclosure of their HIV status. Also, 13.7% (7/51) reported adherence anxiety, 37.2% (19/51) missed ART 1+ times during the past month, and 13.7% (7/51) had difficulty swallowing pills. CONCLUSIONS PLHIV's preference for LAR can be for a variety of reasons other than clinical indications. LAR preference was associated with different domains of unmet needs, including emotional, psychosocial, physical, and adherencerelated challenges.
INTRODUCTIONWe examined comorbidities, comedications and polypharmacy among people living with HIV (PLHIV) and associated challenges with HIV antiretroviral therapy (ART). METHODS A cross-sectional design was used in web-based surveys conducted during 2019 in France, Germany, Italy, and the UK. Pooled sample comprised 120 internists/ infectious disease specialists managing ≥50 HIV patients, and 1171 adult PLHIV combined who participated in two separate surveys, the Positive Perspective Survey (n=483), and the Unmet Needs Survey (n=688). The outcomes were perceptions and behaviors towards ART based on PLHIV and healthcare provider (HCP) perspectives. RESULTS According to HIV physicians, challenges associated with comedications were a major reason for their patients not starting ART, or stopping, switching, or skipping their HIV treatment after they started. In total, 16.8% of providers indicated that their patients had not started ART because of medical reasons/comorbidities that interfered with dosing (France 21.7%, Germany 15.4%, Italy 6.9%, and UK 24.1%). Other reasons cited by providers for patients not starting HIV treatment were: concerns about drug tolerability/side effects (overall 34.6%, France 39.1%, Germany 34.6%, Italy 27.6%, and UK 37.9%); concerns about long-term toxicities (overall 26.2%, France 39.1%, Germany 26.9%, Italy 24.1%, and UK 17.2%), as well as concerns about drug-drug interactions (overall 16.8%, France 13.0%, Germany 26.9%, Italy 17.2%, and UK 10.3%). Averaged across all ART regimen types, the percentage of PLHIV in the Unmet Needs Study who indicated that they needed monitoring when taking other medications with their ART was 5.8%, 15.9%, and 24.1% among those with none, 1, or ≥2 non-HIV comorbidities, respectively. Within the Positive Perspectives Survey, overall prevalence of polypharmacy was 38.8% (France 41.9%, Germany 24.2%, Italy 40.8%, and UK 48.0%). Compared to those without polypharmacy, those reporting polypharmacy had lower odds of reporting viral suppression (adjusted odds ratio, AOR=0.40) and optimal overall health (AOR=0.65); they were however more likely to be worried about taking more medicines as they grew older (AOR=2.15), and to be more concerned how their ART might affect other medicines they took (AOR=2.35) (all p<0.05). CONCLUSIONS A significant unmet need remains for PLHIV relating to co-management of comorbidities and associated challenges such as polypharmacy. Polypharmacy was associated with suboptimal self-rated health and concerns about the risk of long-term negative impacts from ART intake. Holistic care that provides simplified regimens to medically complex patients can help improve treatment outcomes.
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