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Health-related Quality-of-life (health-related + quality-of-life)
Selected AbstractsExperiences with a group intervention for adolescents with type 1 diabetes and their parentsEUROPEAN DIABETES NURSING, Issue 1 2008RN Løding RN Registered Nurse Abstract Background: Increased adolescent-parent engagement in diabetes-related tasks appears to decrease diabetes-related family conflict. Group intervention may be a good approach when caring for adolescents with chronic conditions, including diabetes. Aim: This article aims to describe how group intervention may be useful in the treatment of adolescents with type 1 diabetes. When these children enter puberty and become adolescents, it can become difficult. In many cases, family-related conflict has a negative impact on an adolescent's blood sugar levels and self-care behaviour. Method: 19 adolescents (age 13,17 years) and their parents participated in group intervention. Families were recruited from outpatient clinics in two centres in Middle-Norway. Separate groups met once a month for 1 year. All adolescents and parents completed a battery of self-report measures. In addition, HbA1c values were obtained five times from the adolescents' medical records. Results: In terms of metabolic control there was a significant decrease in HbA1c values in the girls studied. In adolescents of both sexes, the process of deterioration was stopped. Conclusion: The development of efficient interventions for this group of patients is highly needed. Our intervention was peer-oriented and psycho-educative. Although the sample size in this study was small, one may still consider that group intervention may improve parent-adolescent relationships. Results from the study also demonstrate that group intervention may improve metabolic control in girls, without deterioration in health-related quality-of-life. Copyright © 2008 FEND [source] Lessons learned from the Oklahoma Thrombotic Thrombocytopenic Purpura-Hemolytic Uremic Syndrome RegistryJOURNAL OF CLINICAL APHERESIS, Issue 4 2008James N. George Abstract The Oklahoma TTP-HUS Registry provides a complete community perspective of thrombotic thrombocytopenic purpura (TTP). This is possible because plasma exchange is the essential treatment for TTP and the Oklahoma Blood Institute provides all plasma exchange procedures for a region encompassing most of the State, including 58 of Oklahoma's 77 counties. The Registry is an inception cohort of consecutive patients for whom plasma exchange treatment was requested for a diagnosis of either TTP or hemolytic uremic syndrome (HUS). All 382 patients identified from January 1, 1989 to December 31, 2007 have consented to be enrolled. Complete follow-up is available for 380 of 382 patients. Patients are described both by clinical categories, related to their associated conditions and clinically apparent etiologies, and by the presence of severe ADAMTS13 deficiency. ADAMTS13 activity has been measured on 235 (93%) of 254 patients since 1995. Registry data have provided new perspectives on the definition and diagnoses of these syndromes as well as their outcomes. Long-term follow-up has documented that relapse is common among patients with ADAMTS13 deficiency but rarely occurs in patients without ADAMTS13 deficiency. Long-term follow-up has also documented persistent abnormalities of health-related quality-of-life and cognitive function. In addition to providing new perspectives on the natural history of these syndromes, The Oklahoma TTP-HUS Registry provides a support group for our patients, information about evaluation and management for community physicians, and a resource for research and educational programs. J. Clin. Apheresis, 2008. © 2008 Wiley-Liss, Inc. [source] A psychometric evaluation of the Chinese version of the Cardiovascular Limitations and Symptoms Profile in patients with coronary heart diseaseJOURNAL OF CLINICAL NURSING, Issue 17 2008Violeta Lopez Aims and objectives., The aim of this study was to translate from English and evaluate the validity, reliability and cultural relevance of the Cardiovascular Limitations and Symptoms Profile (CLASP) as a health-related quality-of-life (HRQL) measure in Chinese patients with coronary heart disease. Background., Improvement in HRQL is increasingly used as a primary outcome in determining the treatment benefit using a generic instrument. However, disease-specific instruments are being cited as more responsive and sensitive in detecting even the smallest changes in health status. Therefore, valid and reliable disease-specific measures for patients with coronary heart disease are now being developed and evaluated. Design., Questionnaire design. Methods., The translation equivalence and content validity of the Chinese version of CLASP were evaluated by an expert panel. Measurement performance was tested on a convenience sample of 369 Chinese coronary heart disease patients. Results., The instrument demonstrated good content validity (content validity index 0·94), acceptable internal consistency (>0·70), except for two subscales of angina and tiredness and significant positive correlations among the subscales of CLASP, Hospital Anxiety Depression Scale and the Short Form 36 Health Survey. Principal components analysis revealed nine factors that together explained 69% of the variance. Conclusions., The results of this study support that CLASP is a valid and reliable disease-specific health status measure for Chinese patients with coronary heart disease. However, further item modifications and testings are needed when considering the cross-cultural context. Relevance to clinical practice., The use of disease-specific HRQL measures could effectively evaluate nursing interventions in clinical practice. Further validations of CLASP among different diagnostic groups, such as patients with heart failure and those who have survived an acute myocardial infarction, would provide further empirical support for its use with all patients with heart disorders. [source] Urological symptom clusters and health-related quality-of-life: results from the Boston Area Community Health SurveyBJU INTERNATIONAL, Issue 11 2009Susan A. Hall OBJECTIVE To determine whether urological symptom clusters, as identified in previous studies, were associated with health-related quality-of-life (HRQoL) and use of healthcare. SUBJECTS AND METHODS The Boston Area Community Health Survey is a population-based epidemiological study of 2301 male and 3201 female residents of Boston, MA, USA, aged 30,79 years. Baseline data collected from 2002 to 2005 were used in this analysis. Data on 14 urological symptoms were used for the cluster analysis, and five derived symptom clusters among men and four among women were used in multivariate linear regression models (adjusted for age group, race/ethnicity, and comorbidity) to determine their association with physical (PCS-12) and mental health component scores (MCS-12) calculated from the Medical Outcomes Study 12-item Short Form Survey. RESULTS For both men and women, being in the most symptomatic cluster was associated with decrements in the PCS-12 score (men, cluster 5, ,10.42; women, cluster 4, ,9.80; both P < 0.001) and the MCS-12 score (men, cluster 5, ,9.35; women, cluster 4, ,6.24; both P < 0.001) compared with the asymptomatic groups. Both men and women in these most symptomatic clusters appeared to have adequate access to healthcare. CONCLUSION For men and women, those with the most urological symptoms reported poorer HRQoL in two domains after adjusting for age and comorbidity, and despite adequate access to care. [source] Assessment of childhood diabetes-related quality-of-life in West SwedenACTA PAEDIATRICA, Issue 2 2009J E Chaplin Abstract Aim: To investigate health-related quality-of-life (HrQoL) in childhood diabetes and the level of agreement between West Sweden and European reference data for the new multi-cultural European questionnaire , DISABKIDS. Method: Twenty percent of the Swedish paediatric diabetes population was included in the survey. Child-parent pairs completed the DISABKIDS chronic generic (37 questions) and diabetes modules (10 questions) during their routine clinic visit. A one-page results summary, based on positive domains, was used to provide feedback to clinicians. Results: Three hundred and sixty-one child-parent pairs were included in the analysis. In Sweden, diabetes was perceived by the children as having less impact than the European average. Swedish parents rated the HrQoL of their children lower than did the European parents. Swedish girls had a lower HrQoL than boys and greater difficulty accepting their diabetes; adolescents had greater difficulty accepting the diagnosis than younger children. Parents reported greater impact of diabetes on their children than the children themselves but reported no difference between boys and girls. Parents reported better acceptance of treatment in boys. The child's reported quality-of-life (QoL) is related to age and gender. Conclusion: Our results confirm the applicability of DISABKIDS to the Swedish paediatric diabetes population. [source] | ||||||||||