Background Patient experience is acknowledged as a principal aspect of quality healthcare delivery, and it has implications with regard to outcomes. Objectives Our objective was to evaluate the healthcare experience of patients with chronic diseases to identify patient-perceived healthcare gaps and to assess the influence of demographic and healthcare-related variables on patient experiences. Methods A cross-sectional survey was delivered to adult patients with chronic diseases: diabetes mellitus (DM), human immunodeficiency virus (HIV) infection, inflammatory bowel disease (IBD) or rheumatic diseases. Patient experiences were assessed with the Instrument for Evaluation of the Experience of Chronic Patients (IEXPAC) questionnaire, with possible scores ranging from 0 (worst) to 10 (best experience). Results Of the 2474 patients handed the survey, 1618 returned it (response rate 65.4%). Patients identified gaps in healthcare related mainly to access to reliable information and services, interaction with other patients and continuity of healthcare after hospital discharge. The mean ± standard deviation (SD) IEXPAC score was 6.0 ± 1.9 and was higher for patients with HIV (6.6 ± 1.7) than for those with rheumatic disease (5.5 ± 2.0), IBD (5.9 ± 2.0) or DM (5.9 ± 1.9) ( p < 0.001). In multivariate models, better overall IEXPAC experience was associated with follow-up by the same physician, follow-up by a nurse, receiving healthcare support from others and treatment with subcutaneous or intravenous drugs. The multivariate model that confirmed patients with HIV or DM had better experience than did those with rheumatic diseases. Conclusions Through IEXPAC, patients identified aspects for healthcare quality improvements and circumstances associated with better experience, which may permit greater redirection of healthcare toward patient-centered goals while facilitating improvements in social care and long-term healthcare quality. Electronic supplementary material The online version of this article (10.1007/s40271-018-0345-1) contains supplementary material, which is available to authorized users.
Background The assessment of health-related quality of life (HRQoL) in people living with HIV (PLHIV) has become crucial to evidence-based practice. The goals of this study are to analyze the psychometric properties and evidence of the validity of the Spanish version of WHOQOL-HIV-BREF in a sample of PLHIV in Spain and to examine the more impaired HRQoL facets and dimensions and identify the PLHIV who show the most vulnerable profile. Methods A total of 1462 PLHIV participated in an observational cross-sectional ex-post-facto study. Data were collected at 33 Spanish sites through an online survey. In addition to measuring HRQoL, the study used other tools to measure treatment adherence (CEAT-VIH 2.0 version), psychological well-being (GHQ-12) and HIV-related stigma (HSSS). Cronbach’s alpha, first- and second-order confirmatory factor analysis (CFA), the Pearson coefficient and one-way ANOVA were used to evaluate reliability, construct validity and concurrent and known-group validity, respectively. Differences according to the socio-demographic and epidemiological profiles of participants were analyzed. Results First- and second-order CFAs confirmed a six-domain first-order structure of the Spanish version of WHOQOL-HIV-BREF and one second-order factor related to overall HRQoL with an acceptable fit to the data, although some minor changes would improve it. The six-domain structure showed an acceptable internal consistency (Cronbach’s alpha ranged from .61 to .81). Significant moderate to large correlations between domains and overall HRQoL, adherence, psychological well-being and negative self-image were found. Significant differences were found according to participants’ self-reported CD4+ cell count in several HRQoL facets and domains. Being female, heterosexual, having low socio-economic and educational statuses, having acquired HIV through an unsafe injection and living more years with HIV were related to poorer HRQoL. PLHIV older than 50 presented lower scores in 19 HRQoL facets. Conclusions This study demonstrates that the Spanish version of the WHOQOL-HIV-BREF is a valid instrument. It also presents the most recent data about HRQoL in PLHIV in Spain with the largest sample to date. Electronic supplementary material The online version of this article (10.1186/s12955-019-1208-8) contains supplementary material, which is available to authorized users.
Group identification not only did not protect people with HIV from the negative effects of stigmatization, but it may even be detrimental in the case of internalized stigma. This suggests that in highly stigmatized groups, the salience of identity is negative and worsens the members' opinion of their own group. This argues for different kinds of intervention to improve the quality of life of people with HIV.
This study assessed the prevalence and patterns of drug use among people living with HIV (PLHIV) in Spain. We conducted an observational cross-sectional study including 1401 PLHIV. Data were collected through 33 sites across Spain using an online computer-assisted self-administered interview. The survey measured use of illicit drugs and other substances, treatment adherence and health-related variables. To analyse patterns of drug use we performed cluster analysis in two stages. The most frequently consumed substances were: alcohol (86.7%), tobacco (55.0%), illicit drugs (49.5%), other substances (27.1%). The most prevalent illicit drugs used were cannabis (73.8%), cocaine powder (53.9%), and poppers (45.4%). Results found four clusters of PLHIV who used drugs. Two of them were composed mainly of heterosexuals (HTX): Cluster 1 (n = 172) presented the lowest polydrug use and they were mainly users of cannabis, and Cluster 2 (n = 84) grouped mostly men who used mainly heroin and cocaine; which had the highest percentage of people who inject drugs and presented the lowest level of treatment adherence (79.8±14.2; p < .0001). The other two clusters were composed mainly of men who have sex with men (MSM), who were mostly users of recreational drugs. Cluster 3 (n = 285) reported moderate consumption, both regarding frequency and diversity of drugs used, while Cluster 4 (n = 153) was characterized by the highest drug polyconsumption (7.4±2.2; p < .0001), and 4 grouped MSM who injected recreational drugs, and who reported the highest frequency of use of drugs in a sexual context (2.6±0.8; p < .0001) and rates of sexually transmitted infections (1.8±1.1; p < .01). This is the largest multi-centre cross-sectional study assessing the current prevalence and patterns of drug use among PLHIV in Spain. The highest prevalence of drug use was found among MSM, although HTX who used heroin and cocaine (Cluster 2) had the most problems with adherence to HIV treatment and the worst health status.
The primary goal of this study was to adapt Berger, Ferrans, & Lahley (2001) HIV Stigma Scale in Spain, using Bunn, Solomon, Miller, & Forehand (2007) version. A second goal assessed whether the four-factor structure of the adapted scale could be explained by two higher-order dimensions, perceived external stigma and internalized stigma. A first qualitative study (N = 40 people with HIV, aged 28-59) was used to adapt the items and test content validity. A second quantitative study analyzed construct and criterion validity. In this study participants were 557 people with HIV, aged 18-76. The adapted HIV Stigma Scale for use in Spain (HSSS) showed a good internal consistency (α = .88) and good construct validity. Confirmatory Factor Analyses yielded a first-order, four-factor structure and a higher-order, bidimensional structure with the two expected factors (RMSEA = .051, 90% CI [.046, .056]; RMR = .073; GFI = .96; AGFI = .96; CFI = .98). Negative relations were found between stigma and quality of life (r = -.39; p < .01), self-efficacy to cope with stigma (r = -.50; p < .01) and the degree of HIV status disclosure (r = -.35; p < .01). Moreover, the people who had suffered AIDS-related opportunistic infections had a higher score in the Perceived External Stigma dimension than those who had not suffered them, t (493) = 3.02, p = .003, d = 0.26.
Objective: The objective of the current work was to assess the frequency of non-adherence behaviors and potential association with patients' experience with healthcare and beliefs in medicines selfreported by patients with four different chronic conditions. Methods: Patients responded anonymously to a survey comprising five non-adherence behaviors (based on physician and patient input), an assessment of patients' experience with healthcare using the validated Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC), and a validated Spanish version of the Beliefs about Medicines Questionnaire (BMQ). Associations of nonadherence behavior were analyzed using logistic regression models. Results: Of 1530 respondents, 53.1% reported !1 non-adherence behavior. Non-adherence rates were 59.8% in diabetes mellitus (DM), 56.0% in rheumatic disease, 55.6% in inflammatory bowel disease, and 42.8% in human immunodeficiency virus (HIV) infection patients (p < .001). IEXPAC and BMQ scores were higher in adherent vs. non-adherent patients. In multivariate analysis, non-adherence behavior was strongly associated with lower overall BMQ, lower BMQ Necessity scores and higher BMQ Concerns scores (p < .001 for all), and with a lower IEXPAC self-management score (p ¼ .007), but not with the overall IEXPAC score. Non-adherence was more frequent in DM patients compared with HIV infection patients (p < .001). Conclusions: Patients' beliefs in medicines-a lower perception for the necessity of medication, and higher concerns in taking medication-and low patient self-management experience score were associated with non-adherence behavior. These are modifiable aspects that need to be addressed to increase medication adherence in chronic disease.
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