Browsing by Subject "Quality of life"
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- ItemOpen AccessThe association between aids related stigma and major depressive disorder among HIV-positive individuals in Uganda(Public Library of Science, 2012) Akena, Dickens; Musisi, Seggane; Joska, John; Stein, Dan JBACKGROUND: Major depressive disorder in people living with HIV/AIDS (PLWHA) is common and may be associated with a number of factors, including AIDS-related stigma, decreased CD4 levels, increased opportunistic infections and sociodemographic variables. The extent to which AIDS-related stigma is associated with major depressive disorder among PLWHA has not been well studied in sub-Saharan Africa. The objective of this study was to examine the associations between major depressive disorder, AIDS-related stigma, immune status, and sociodemographic variables with the aim of making recommendations that can guide clinicians. METHODS: We assessed 368 PLWHA for major depressive disorder, as well as for potentially associated factors, including AIDS-related stigma, CD4 levels, presence of opportunistic infections, and sociodemographic variables. RESULTS: The prevalence of major depressive disorder was 17.4%, while 7.9% of the participants had AIDS related stigma. At multivariable analysis, major depressive disorder was significantly associated with AIDS-related stigma [OR = 1.65, CI (1.20-2.26)], a CD4 count of ≥200 [OR 0.52 CI (0.27-0.99)], and being of younger age [0.95, CI (0.92-0.98). CONCLUSIONS: Due to the high burden of major depressive disorder, and its association with AIDS related stigma, routine screening of PLWHA for both conditions is recommended. However, more research is required to understand this association.
- ItemOpen AccessDifference in quality of life of referred hospital patients after hospital palliative care team intervention(2006) Kirk, Judy; Collins, KathleenIn 2001 Selma Browde created an expanded definition of palliative medicine in South Africa that reads as follows: ‘Palliative Care supplies active comprehensive care for the physical, emotional, psychosocial and spiritual suffering of the patient and the family. It starts at the moment of first contact with the patient with any illness at any stage and continues for the duration of the illness. If and when the illness becomes incurable, Palliative Care then plays the major or total role.’1 In the same year, Browde established a hospital palliative care team (HPCT) at the Johannesburg General Hospital. There are now six such teams in South Africa, yet no systematic evaluation had been carried out before this research.
- ItemOpen AccessDifference in quality of life of referred hospital patients after hospital palliative care team intervention(2006) Kirk, Judy; Collins, KathleenIn 2001 Selma Browde created an expanded definition of palliative medicine in South Africa that reads as follows: ‘Palliative Care supplies active comprehensive care for the physical, emotional, psychosocial and spiritual suffering of the patient and the family. It starts at the moment of first contact with the patient with any illness at any stage and continues for the duration of the illness. If and when the illness becomes incurable, Palliative Care then plays the major or total role.’1 In the same year, Browde established a hospital palliative care team (HPCT) at the Johannesburg General Hospital. There are now six such teams in South Africa, yet no systematic evaluation had been carried out before this research.
- ItemOpen AccessEffectiveness of mobile text reminder in improving adherence to medication, physical exercise, and quality of life in patients living with HIV: a systematic review(2021-08-23) Ibeneme, Sam C.; Ndukwu, Sandra C.; Myezwa, Hellen; Irem, Franklin O.; Ezenwankwo, Fortune E.; Ajidahun, Adedayo T.; Ezuma, Amarachi D.; Nnamani, Amaka; Onodugo, Obinna; Fortwengel, Gerhard; Uwakwe, Victor C.Background Mobile text reminder (SMS) system is considered a viable strategy for targeting/facilitating healthy behavioural change including adherence to prescribed physical exercises (PE) and medication (antiretroviral therapy-ART) which should improve the quality of life (Qol) in people living with HIV/AIDS(PLWHA). Thus, the literature was appraised for evidence of SMS effectiveness in improving ART and PE adherence behaviours and QoL in PLWHA. Methods Eight databases–AMED, CINAHL, Cochrane Library, EMBASE, EMCARE, Ovid MEDLINE, PsycINFO, and PubMed-were searched up to December 2020, using the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) protocol.This review included only randomised control trials (RCTs) investigating the effectiveness of SMS in improving QoL or PE or ART adherence behaviour or a combination of these variables in PLWHA >18 years. Two independent reviewers determined the eligibility of the studies. Data were extracted and the quality of the study was assessed with the Physiotherapy Evidence Database (PEDro) tool. The primary outcomes were ART and PE adherence behaviours while the secondary outcome was QoL. Result A pooled estimate of effect was not calculated due to the heterogeneity of methods and outcome measures. Therefore, a narrative synthesis of ten studies that met the inclusion criteria (n = 1621 participants at study completion) comprising males/females, aged ≥ 18 years, was done. There was a significant improvement in ART adherence behaviour except in three underpowered studies. Only the SMS interventions that were developed using the Starks 3-steps Adherence model was associated with positive outcome. The only study that evaluated QoL was underpowered and reported no significant change while there were no RCTs on PE. Conclusion Effects of SMS intervention trends towards a significant improvement in ART adherence behaviour in PLWHA. It is plausible that SMS reminders developed using the broader framework of the interpersonal health behaviour theory(ies) may have positive outcome. Nevertheless, the observed heterogeneity in the methods/outcome measures warrants a cautious interpretation of the findings. There is a lack/paucity of RCTs and therefore no evidence in support of the effectiveness of SMS intervention in improving PE adherence and QoL. Registration number NPLASY202060016.
- ItemOpen AccessHealthcare system inputs and patient-reported outcomes: a study in adults with congenital heart defect from 15 countries(2020-06-03) Van Bulck, Liesbet; Goossens, Eva; Luyckx, Koen; Apers, Silke; Oechslin, Erwin; Thomet, Corina; Budts, Werner; Enomoto, Junko; Sluman, Maayke A; Lu, Chun-Wei; Jackson, Jamie L; Khairy, Paul; Cook, Stephen C; Chidambarathanu, Shanthi; Alday, Luis; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Johansson, Bengt; Mackie, Andrew S; Menahem, Samuel; Caruana, Maryanne; Veldtman, Gruschen; Soufi, Alexandra; Fernandes, Susan M; White, Kamila; Callus, Edward; Kutty, Shelby; Moons, PhilipBackground The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries’ healthcare system on patient-reported outcomes in adults with congenital heart disease. Methods This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. Results Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed. Conclusions This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn. Trial registration ClinicalTrials.gov: NCT02150603. Registered 30 May 2014,
- ItemOpen AccessMajor depressive disorder and its association with adherence to antiretroviral therapy and quality of life: cross-sectional survey of people living with HIV/AIDS in Northwest Ethiopia(2020-09-24) Asrat, Biksegn; Lund, Crick; Ambaw, Fentie; Garman, Emily C; Schneider, MargueriteAbstract Background Major depression is believed to affect treatment adherence and overall quality of life (QoL) of people living with HIV/AIDS (PLWHA). Comorbid major depression contributes to a two-fold higher risk of mortality among PLWHA. Understanding the relationships of major depression, adherence to antiretroviral therapy (ART) and QoL is important to identify areas for intervention. The aim of this study is to examine relationship of major depressive disorder (MDD) and adherence to ART with QoL, and to investigate socio-demographic and clinical factors associated with MDD, adherence and QoL among PLWHA in Northwest Ethiopia. Method A cross-sectional study was conducted in the ART clinic of Felege-Hiwot referral hospital in Northwest Ethiopia from July to October 2019. Adult PLWHA were selected using a systematic random sampling technique. Data were collected using interview administered questionnaires and chart reviews. Mini International Neuropsychiatric Interview and WHOQOL-HIV-BREF-Eth instruments were used to measure MDD and QoL respectively. Adherence to ART was assessed using pill count data from patients’ adherence monitoring chart. Univariate and multivariate Poisson regressions were used to assess associations of socio-demographic and clinical factors with MDD and adherence to ART. A multivariate linear regression was used to examine the associations of both MDD and adherence with overall QoL. Result Of the total of 393 invited participants, 391 (99.5%) completed the interviews. MDD was negatively associated with overall QoL: participants with MDD had a lower QoL score of 0.17 points compared to those with no MDD. MDD was associated with reduced adherence to ART when functional disability was controlled (RR = 1.43; 95%CI = 1.05, 1.96; p = 0.025). However, there was no statistical association between adherence to ART and overall QoL. Functional disability was associated with both MDD (RR = 5.07; 95%CI = 3.27,7.86; p < 0.001) and overall QoL (β = 0.29; 95%CI = 0.21,0.36; p < 0.001). Conclusion The relationship between MDD and QoL indicates the need for feasible, acceptable and evidence-based mental health interventions to reduce depression and improve overall QoL of PLWHA. We recommend future studies investigate causal relationships of MDD, adherence to ART and QoL of PLWHA to better understand priority areas for intervention.
- ItemOpen AccessPathways to care for critically ill or injured children: A cohort study from first presentation to healthcare services through to admission to intensive care or death(Public Library of Science, 2016) Hodkinson, Peter; Argent, Andrew; Wallis, Lee; Reid, Steve; Perera, Rafael; Harrison, Sian; Thompson, Matthew; English, Mike; Maconochie, Ian; Ward, AlisonPurpose Critically ill or injured children require prompt identification, rapid referral and quality emergency management. We undertook a study to evaluate the care pathway of critically ill or injured children to identify preventable failures in the care provided. METHODS: A year-long cohort study of critically ill and injured children was performed in Cape Town, South Africa, from first presentation to healthcare services until paediatric intensive care unit (PICU) admission or emergency department death, using expert panel review of medical records and caregiver interview. Main outcomes were expert assessment of overall quality of care; avoidability of severity of illness and PICU admission or death and the identification of modifiable factors. RESULTS: The study enrolled 282 children, 252 emergency PICU admissions, and 30 deaths. Global quality of care was graded good in 10% of cases, with half having at least one major impact modifiable factor. Key modifiable factors related to access to care and identification of the critically ill, assessment of severity, inadequate resuscitation, and delays in decision making and referral. Children were transferred with median time from first presentation to PICU admission of 12.3 hours. There was potentially avoidable severity of illness in 185 (74%) of children, and death prior to PICU admission was avoidable in 17/30 (56.7%) of children. CONCLUSIONS: The study presents a novel methodology, examining quality of care across an entire system, and highlighting the complexity of the pathway and the modifiable events amenable to interventions, that could reduce mortality and morbidity, and optimize utilization of scarce critical care resources; as well as demonstrating the importance of continuity and quality of care.
- ItemOpen AccessPhenotypes of adults with congenital heart disease around the globe: a cluster analysis(2021-02-10) Callus, Edward; Pagliuca, Silvana; Boveri, Sara; Ambrogi, Federico; Luyckx, Koen; Kovacs, Adrienne H; Apers, Silke; Budts, Werner; Enomoto, Junko; Sluman, Maayke A; Wang, Jou-Kou; Jackson, Jamie L; Khairy, Paul; Cook, Stephen C; Chidambarathanu, Shanthi; Alday, Luis; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Johansson, Bengt; Mackie, Andrew S; Menahem, Samuel; Caruana, Maryanne; Veldtman, Gruschen; Soufi, Alexandra; Fernandes, Susan M; White, Kamila; Kutty, Shelby; Moons, PhilipObjective To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL). Methods This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013–2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0–100) measuring QoL. Results 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities. Conclusions This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.
- ItemOpen AccessProfiling the mental health of diabetic patients: a cross-sectional survey of Zimbabwean patients(BioMed Central, 2018-10-29) Nyoni, Alima M; Chiwaridzo, Matthew; Tadyanemhandu, Catherine; January, James; Dambi, Jermaine MObjective The burden of diabetes mellitus has exponentially increased in low resource settings. Patients with diabetes are more likely to exhibit poor mental health which negatively affects treatment outcomes. However, patients with high levels of social support (SS) are likely to report optimal mental health. We sought to determine how SS affects the report of psychiatric morbidity and health-related quality of life (HRQoL) in 108 diabetic patients in Harare, Zimbabwe. Results The average age of participants was 54.1 (SD 18.6) years. Most of the participants were; females (69.4%), married (51.9%), and were of low level of income (43.5%). 37.1% of the participants exhibited signs of psychiatric morbidity [mean Shona Symptoms Questionnaire score—6.7 (SD 3.2)]. Further, patients also reported lower HRQoL [mean EQ-5D-VAS score—64.1 (SD 15.3)] and high levels of SS [mean Multidimensional Scale of Perceived Social Support score—43.7 (SD 11.5)]. Patients who received greater amount of SS had optimal mental health. Being female, unmarried, lower education attainment, having more comorbid conditions, being diagnosed with type 2 diabetes and having been diagnosed of diabetes for a longer duration were associated with poorer mental health. It is important to develop context-specific interventions to improve diabetic patients’ mental health.
- ItemOpen AccessThe international WAO/EAACI guideline for the management of hereditary angioedema – the 2017 revision and update(BioMed Central, 2018-02-27) Maurer, Marcus; Magerl, Markus; Ansotegui, Ignacio; Aygören-Pürsün, Emel; Betschel, Stephen; Bork, Konrad; Bowen, Tom; Boysen, Henrik B; Farkas, Henriette; Grumach, Anete S; Hide, Michihiro; Katelaris, Constance; Lockey, Richard; Longhurst, Hilary; Lumry, William R.; Martinez-Saguer, Inmaculada; Moldovan, Dumitru; Nast, Alexander; Pawankar, Ruby; Potter, Paul; Riedl, Marc; Ritchie, Bruce; Rosenwasser, Lanny; Sánchez-Borges, Mario; Zhi, Yuxiang; Zuraw, Bruce; Craig, TimothyHereditary Angioedema (HAE) is a rare and disabling disease. Early diagnosis and appropriate therapy are essential. This update and revision of the global guideline for HAE provides up-to-date consensus recommendations for the management of HAE. In the development of this update and revision of the guideline, an international expert panel reviewed the existing evidence and developed 20 recommendations that were discussed, finalized and consented during the guideline consensus conference in June 2016 in Vienna. The final version of this update and revision of the guideline incorporates the contributions of a board of expert reviewers and the endorsing societies. The goal of this guideline update and revision is to provide clinicians and their patients with guidance that will assist them in making rational decisions in the management of HAE with deficient C1-inhibitor (type 1) and HAE with dysfunctional C1-inhibitor (type 2). The key clinical questions covered by these recommendations are: 1) How should HAE-1/2 be defined and classified?, 2) How should HAE-1/2 be diagnosed?, 3) Should HAE-1/2 patients receive prophylactic and/or on-demand treatment and what treatment options should be used?, 4) Should HAE-1/2 management be different for special HAE-1/2 patient groups such as pregnant/lactating women or children?, and 5) Should HAE-1/2 management incorporate self-administration of therapies and patient support measures? This article is co-published with permission in Allergy and the World Allergy Organization Journal.
- ItemOpen AccessUnderstanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM(BioMed Central, 2023-08-08) Müller, Annelieke R.; Luijten, Michiel A. J.; Haverman, Lotte; de Ranitz-Greven, Wendela L.; Janssens, Peter; Rietman, André B.; ten Hoopen, Leontine W.; de Graaff, Laura C. G.; de Wit, Marie-Claire; Jansen, Anna C.; Gipson, Tanjala; Capal, Jamie K.; de Vries, Petrus J.; van Eeghen, Agnies M.Background Tuberous sclerosis complex (TSC) is a rare and complex genetic disorder, associated with tumor growth in various organ systems, epilepsy, and a range of neuropsychiatric manifestations including intellectual disability. With improving patient-centered care and targeted therapies, patient-reported outcome measures (PROMs) are needed to measure the impact of TSC manifestations on daily functioning. The aim of this study was to develop a TSC-specific PROM for adults that captures the impact of TSC on physical functions, mental functions, activity and participation, and the social support individuals with TSC receive, called the TSC-PROM. Methods COSMIN methodology was used to develop a self-reported and proxy-reported version. Development and validation consisted of the following studies: PROM development, content validity, structural validity, internal consistency, and construct validity. The International Classification of Functioning and Disability was used as a framework. Content validity was examined by a multidisciplinary expert group and cognitive interview study. Structural and construct validity, and internal consistency were examined in a large cohort, using confirmatory factor analysis, hypotheses testing, and Cronbach’s alpha. Results The study resulted in an 82-item self version and 75-item proxy version of the TSC-PROM with four subscales (physical functions 18 and 19 items, mental functions 37 and 28 items, activities and participation 13 and 14 items, social support 13 items, for self version and proxy version respectively). Sufficient results were found for structural validity with sufficient unidimensionality for each subscale. With regard to construct validity, 82% of the hypotheses were met for the self version and 59% for the proxy version. The PROM showed good internal consistency (Cronbach’s alpha 0.78–0.97). Conclusions We developed a PROM for adults with TSC, named TSC-PROM, showing sufficient evidence for reliability and validity that can be used in clinical and research settings to systematically gain insight into their experiences. It is the first PROM in TSC that addresses the impact of specific TSC manifestations on functioning, providing a valuable, patient-centered addition to the current clinical outcomes.