Disease-related Health-related Quality Of Life Research Articles

Health-Related Quality of Life (HRQoL) in Haemodialysis Patients in Khartoum, Sudan

Much research has been conducted in many countries on the Health-Related Quality of Life (HRQoL) of haemodialysis patients, but few have been conducted in Khartoum, Sudan. All studies have shown that patients’ Quality of Life regarding the dimensions of physical, psychological, social, and environmental was affected by the disease. Previous research ignored the impact of religious beliefs on haemodialysis patients. We used the WHOQOL-BREF questionnaire (the English standard version) to collect data from 181 participating patients. Religious beliefs had a significant impact on the overall outcome of the study, and strong social relationships among the Sudanese population (which distinguishes the Sudanese population from other nations) increased the patients’ satisfaction rate with their social relationships. The lack of transport facilities from the patients’ homes to the dialysis center (and vice versa) forced the patients to reduce the number of prescribed sessions. Background: In recent decades, Health-Related Quality of Life (HRQoL) endpoints have proven to be valuable research tools for evaluating the outcomes of therapeutic interventions in chronic diseases. End-stage renal disease (ESRD) is one such chronic disease that leads to a high degree of disability in various aspects of the patient’s life and impairs their quality of life. Objectives: The main objectives of this study were to assess the QoL in haemodialysis patients concerning their physical, psychological, social, and environmental health dimensions, and to assess the effects of age, sex, income, and level of education, in addition, to identify modifiable factors in Khartoum Sudan, associated with Health-Related Quality of Life (HRQoL) among chronic haemodialysis patients. Instrument and Material: A sample of 181 patients was recruited for this study. To collect the data we used the WHOQOL-BREF (the English standard version), a generic health-related questionnaire developed by the WHOQOL group and available in 19 different languagesThe English standard version was recommended by Mrs Sibel Volcan (WHOQOL representative) because it is best suited to Sudan. Scoring and Validation of WHOQOL-BREF Questionnaire: A detailed step-by-step guide to using the WHOQOL-BREF questionnaire was clearly explained to me in a separate document by the WHOQOL representative. Results: Religious beliefs have a significant impact on the overall outcome of the study. No correlation was found between patients’ age, gender, and quality of life. Physical pain prevented 63.5% of the participating patients from doing what they needed to do, 49.2% of the haemodialysis patients had the energy to carry out their daily activities, 71.8 were satisfied with their sleep, 34.3% often had a negative feeling, 83% were satisfied with their sex life, 2.8% do not have a physically healthy environment, 43.3% were dissatisfied with the condition of their living spaces, the transportation was a nightmare for the majority of patients, 84.5% were satisfied with their social relationships and the support they receive from people around them, and .6% of patients have no way at all to meet their daily needs. Discussion: Physical pain prevented 63.5% of patients from doing what they needed to do to some extent, 40.9% were dependent on medical treatments to perform their daily activities, more than half of haemodialysis patients can get around, the lack of important information harms patients and transportation is a nightmare for the majority of participating haemodialysis patients. Conclusion: Inadequate distribution of dialysis centers in Sudan, lack of stable transportation from patients’ homes to dialysis centers (and vice versa), and insufficient information on how to deal with the disease were significantly associated with lower scores for all general and several kidney disease-related HRQoL scores. Key words: HRQOL, Haemodialysis, Sudan

The association between disease activity and patient-reported outcomes in patients with moderate-to-severe ulcerative colitis in the United States and Europe

BackgroundPatients with ulcerative colitis (UC) experience periods of recurring and episodic clinical signs and symptoms. This study sought to establish the association between disease activity and health-related quality of life (HRQoL) and other patient-reported outcomes.MethodsUnited States (US) and European Union 5 ([EU5]; i.e., France, Germany, Italy, Spain, and the United Kingdom) data from the 2015 and 2017 Adelphi Inflammatory Bowel Disease-Specific Programme (IBD-DSP) were used. The IBD-DSP is a database of retrospective patient chart information integrated with patient survey data (EuroQoL-5 Dimensions [EQ-5D], Short Quality of Life in Inflammatory Bowel Disease Questionnaire [SIBDQ], and Work Productivity and Activity Impairment-Ulcerative Colitis [WPAI-UC] questionnaire).Using available chart information, physicians classified their moderate-to-severe patients into one of the following categories: remission with a Mayo endoscopic score = 0 (“deep remission”), remission without a Mayo endoscopic score = 0 (“remission”), or active disease. Differences among disease activity categories with respect to patient-reported outcomes were analyzed using generalized linear models, controlling for confounding variables.ResultsN = 289 and N = 1037 patient charts with linked surveys were included from the US and EU5, respectively. The disease activity distribution was as follows: active disease = 40.1% (US) and 33.6% (EU5); remission = 48.0 and 53.0%; deep remission = 11.9 and 13.3%. Patients with active disease reported significantly lower levels of EQ-5D health state utilities (adjusted mean [AdjM] = 0.87 [US] and 0.78 [EU5]) compared with remission (AdjM = 0.92 and 0.91) and deep remission (AdjM = 0.93 and 0.91) (all P < 0.05 compared with active disease within each region). Similar findings were observed with the scores from the SIBDQ and the WPAI-UC. No significant differences were observed between remission categories.ConclusionsAmong patients with moderate-to-severe UC in the US and EU5, active disease was associated with significant impairments in HRQoL, work and leisure activities. These results reinforce the importance, to both the patient and society, of achieving some level of remission to restore generic and disease-related HRQoL and one’s ability to work productively.

An observational study of self-reported sedentary behaviour in people with chronic obstructive pulmonary disease and bronchiectasis

BackgroundFew studies have examined sedentary behaviour in chronic respiratory disease. The limited evidence suggests that increased levels of sedentary behaviour are associated with increased mortality. ObjectivesThis study aimed to compare the level of self-reported sedentary behaviour in people with chronic obstructive pulmonary disease (COPD) and bronchiectasis as well as to identify associations between sedentary time with functional performance measures and health-related quality of life in the chronic respiratory disease group. MethodsAn observational study design was used. Participants completed the Sedentary Behaviour Questionnaire from which average sedentary time (hours/day) was determined. Functional performance was measured using the six-minute walk test, the four-metre gait speed test and the five sit-to-stand test. Health-related quality of life was measured using the St George's Respiratory Questionnaire. Sedentary time was compared between groups using an unpaired t-test. Univariate analysis explored relationships amongst variables. ResultsThe convenience sample consisted of 103 people with COPD [52% male; mean±SD age: 73±9 years, FEV1% predicted: 56±23] and 33 people with bronchiectasis [52% male; 74±8 years, FEV1% predicted: 69±25]. Average self-reported sedentary time in COPD was 7.6±2.7 hours/day and in bronchiectasis was 8.0±4.1 hours/day, with no between-group difference (−0.4, 95% CI −1.7, 0.8). No associations were found between sedentary time and any functional performance outcome or with health-related quality of life. ConclusionThere was no difference in the high sedentary time between people with COPD and bronchiectasis. Sedentary behaviour was not associated with functional performance or disease-related health-related quality of life in people with chronic respiratory disease.

Health-Related Quality of Life and Psychological Adjustment of Children and Adolescents with Pacemakers and Implantable Cardioverter Defibrillators: A Systematic Review.

The absence of cardiac symptoms, the improved exercise tolerance and the increased life expectancy are the advantages of a successful cardiac device therapy. Nevertheless, the fact of a lifelong device dependency, the inherent possibility of device malfunction and the progression of the underlying heart disease may impact the health-related quality of life (HRQoL) and the psychological adjustment of these individuals. To date, an overview of findings on these topics is lacking. The objective of this study was to evaluate and summarize the current evidence on generic and disease-specific HRQoL and psychological adjustment in paediatric patients with a pacemaker (PM) or an implantable cardioverter defibrillator (ICD). A systematic literature search was conducted using relevant databases and predefined keywords. Study selection was conducted based on predefined inclusion criteria. Fourteen studies were selected which were of varying methodological quality. Overall, the studies indicated that PM/ICD patients themselves and their parents scored lower than healthy controls on generic HRQoL scales and reported similar disease-related HRQoL as patients with severe forms of congenital heart disease. Regarding psychological adjustment outcome, PM recipients and norms were not significantly different with respect to anxiety and depression symptoms, while ICD patients showed more signs of anxiety than depression. HRQoL and psychological health should be considered when setting therapy goals and evaluating medical treatment success. This approach allows an early intervention in patients at risk of maladaptation, which is especially important in the young patient undergoing crucial developmental stages.

Health-Related Quality of Life Subdomains in Patients with Parkinson's Disease: The Role of Gender.

The most frequently used instrument to assess health-related quality of life (HrQoL) in Parkinson's disease (PD) is the Parkinson's Disease Questionnaire 39 (PDQ-39). However, both the dimensionality of the eight PDQ-39 subscales and their summary score recently faced criticism. Furthermore, data on disease-related and neuropsychological determinants and the role of gender on HrQoL in PD are inconclusive yet. Therefore, our aim was to reevaluate the PDQ-39 structure and to further explore determinants of HrQoL in PD. 245 PD patients (age: M = 69.64, SD = 8.43; 62.9% male; H&Y: Md = 3.00; cognitive assessment with PANDA: M = 24.82, SD = 3.57) from the baseline database of the Cologne Parkinson Network were used to reevaluate the dimensionality of the PDQ-39 with a principal component analysis (PCA). Multiple regression analyses were conducted to clarify general and domain-specific relationships between clinical, (neuro)psychological, and sociodemographic variables, gender in particular, and HrQoL. The PCA identified three HrQoL domains: physical-functioning, cognition, and socioemotional HrQoL. Depressive symptoms were identified as the most important determinant of HrQoL across all models. Disease-related HrQoL determinants (UPDRS-III, H&Y stage, and LEDD) were less strong and consistent HrQoL determinants than nonmotor symptoms. Analyses did not reveal a global gender effect; however, female gender was a negative predictor for physical-functioning and socioemotional HrQoL, whereas male gender was a negative predictor for cognition HrQoL. Our analyses suggest the consideration of a reevaluation of the PDQ-39. Only the full understanding of HrQoL, its determinants, and their interrelationships will allow the development of PD intervention strategies focusing on what matters the most for patients' HrQoL. Gender is one relevant variable that should be considered in this context.

Meaning behind measurement: self-comparisons affect responses to health-related quality of life questionnaires

The subjective nature of quality of life is particularly pertinent to the domain of health-related quality of life (HRQOL) research. The extent to which participants' responses are affected by subjective information and personal reference frames is unknown. This study investigated how an elderly population living with a chronic metabolic bone disorder evaluated self-reported quality of life. Participants (n = 1,331) in a multi-centre randomised controlled trial for the treatment of Paget's disease completed annual HRQOL questionnaires, including the SF-36, EQ-5D and HAQ. Supplementary questions were added to reveal implicit reference frames used when making HRQOL evaluations. Twenty-one participants (11 male, 10 female, aged 59-91 years) were interviewed retrospectively about their responses to the supplementary questions, using cognitive interviewing techniques and semi-structured topic guides. The interviews revealed that participants used complex and interconnected reference frames to promote response shift when making quality of life evaluations. The choice of reference frame often reflected external factors unrelated to individual health. Many participants also stated that they were unclear whether to report general or disease-related HRQOL. It is important, especially in clinical trials, to provide instructions clarifying whether 'quality of life' refers to disease-related HRQOL. Information on self-comparison reference frames is necessary for the interpretation of responses to questions about HRQOL.