Quality Life Research Papers - Academia.edu (original) (raw)

The effect of enzyme replacement therapy on health-related quality of life in 25 adults with type 1 Gaucher disease was investigated over a 2-year period. Quality of life was assessed using the SF-36 Health Survey (SF-36). Psychological... more

The effect of enzyme replacement therapy on health-related quality of life in 25 adults with type 1 Gaucher disease was investigated over a 2-year period. Quality of life was assessed using the SF-36 Health Survey (SF-36). Psychological functioning was assessed using the Symptom Checklist--90R. The results indicated significant improvement in 7 of 8 SF scale scores beginning at 18 months of therapy (P < 0.05 to 0.001). The SF scale showing improvement first was Vitality (energy level and fatigue) at 6 months of therapy (P < 0.01). The SF-36 scales showing the largest improvements were Role-Physical and Social Functioning (P < 0.001). Compared to the general US adult population, the study population's health profile was significantly lower prior to starting therapy but by 24 months of therapy there were no differences between the two. No differences were found in psychological functioning compared to a US adult normative group at the start of therapy. However, within the...

Patient-reported outcome (PRO) measures originally developed for paper administration are increasingly being administered electronically in clinical trials and other health research studies. Three published meta-analyses of measurement... more

Patient-reported outcome (PRO) measures originally developed for paper administration are increasingly being administered electronically in clinical trials and other health research studies. Three published meta-analyses of measurement equivalence among paper and electronic modes aggregated findings across hundreds of PROs, but there has not been a similar meta-analysis that addresses a single PRO, partly because there are not enough published measurement equivalence studies using the same PRO. Because the SF-36 Health Survey (SF-36) is a widely used PRO, the aim of this study was to conduct a meta-analysis of measurement equivalence studies of this survey. A literature search of several medical databases used search terms for variations of "SF-36" or "SF-12" and "equivalence" in the title or abstract of English language publications. The eight scale scores and two summary measures of the SF-36 and SF-12 were transformed to norm-based scores (NBS) using...

Purpose The World Health Organization Quality of Life Scale Brief Version (WHOQOL-BREF) is used for patients with schizophrenia although no validation is available. This work addresses this issue by dealing with its psychometric... more

Purpose The World Health Organization Quality of Life Scale Brief Version (WHOQOL-BREF) is used for patients with schizophrenia although no validation is available. This work addresses this issue by dealing with its psychometric properties in a clinical sample of patients with schizophrenia. Methods Two hundred forty-one patients from 10 Adult Mental Health Care Centers (AMHCC) meeting the following inclusion criteria were included:

Given the increasing interest in quality of life research in cancer survivorship, psychometric properties of the Quality of Life-Cancer Survivors (QOL-CS) were explored in a group of childhood cancer survivors. The QOL-CS is a 41-item... more

Given the increasing interest in quality of life research in cancer survivorship, psychometric properties of the Quality of Life-Cancer Survivors (QOL-CS) were explored in a group of childhood cancer survivors. The QOL-CS is a 41-item visual analog scale composed of four multi-item sub-scales (physical well-being, psychological well-being, social well-being, spiritual well-being) and two sub-components (fears, distress). This instrument was incorporated in a mailed survey completed by 177 respondents. The underlying factor structure and internal reliability of the instrument were explored. A preliminary assessment of the external validity of the factor structure was undertaken. Results of a factor analysis were theoretically consistent with elements assessed in the QOL-CS, although misclassification of several items was noted and discussed. Internal-consistency reliability was very good (Cronbach's alpha = 0.80-0.89) for five of the six factors. Moderate (0.30 < r < 0.45) ...

A striking rise in the incidence and prevalence of congestive heart failure (CHF) in the Chinese population has been reported. While promoting the quality of life (QOL) of these patients is widely recognized as an important clinical... more

A striking rise in the incidence and prevalence of congestive heart failure (CHF) in the Chinese population has been reported. While promoting the quality of life (QOL) of these patients is widely recognized as an important clinical priority, there is not a validated Chinese disease-specific QOL measure for CHF patients. The aim of this study was to validate the Chinese version of Chronic Heart Failure Questionnaire (CHQ-C) which measures the disease-specific QOL of patients with CHF. A sample of 110 CHF elderly patients and a comparison group of 64 healthy elderly people was recruited. Structured questionnaires were administered by a research nurse. Criterion and construct validity of CHQ-C was demonstrated by its significant correlation with the New York Heart Association classification (Spearman r = −0.52, p Hospital Anxiety and Depression scale (Pearson r = −0.74, p

Purpose Hypoparathyroidism (HP) is a rare endocrine disorder characterized by absent or inappropriately low levels of circulating parathyroid hormone (PTH). Research indicates that HP patients on conventional therapy may have a reduced... more

Purpose Hypoparathyroidism (HP) is a rare endocrine disorder characterized by absent or inappropriately low levels of circulating parathyroid hormone (PTH). Research indicates that HP patients on conventional therapy may have a reduced quality of life. The study’s purpose was to develop a new disease-specific measure of the impacts of hypoparathyroidism on functioning and well-being and provide evidence for its content validity based on rigorous qualitative research methodologies for patient-reported outcomes development. Methods Semi-structured, individual concept elicitation (CE) interviews were conducted with 5 clinical experts and 42 adults in the USA with HP to identify impacts of relevance and importance to the target population. Transcripts were coded and analyzed using an adapted grounded theory approach common to qualitative research. Following item generation, the draft measure was cognitive debriefed in an independent sample of 16 adults with HP. Results Analyses identifi...

Purpose The aims of this cross-sectional study were to explore reliability and validity of the Norwegian version of the Patient-Reported Outcome Measurement System®—Profile 57 (PROMIS-57) questionnaire in a general population sample,... more

Purpose The aims of this cross-sectional study were to explore reliability and validity of the Norwegian version of the Patient-Reported Outcome Measurement System®—Profile 57 (PROMIS-57) questionnaire in a general population sample, n = 408, and to examine Item Response properties and factor structure. Methods Reliability measures were obtained from factor analysis and item response theory (IRT) methods. Correlations between PROMIS-57 and RAND-36-item health survey (RAND36) were examined for concurrent and discriminant validity. Factor structure and IRT assumptions were examined with factor analysis methods. IRT Item and model fit and graphic plots were inspected, and differential item functioning (DIF) for language, age, gender, and education level were examined. Results PROMIS-57 demonstrated excellent reliability and satisfactory concurrent and discriminant validity. Factor structure of seven domains was supported. IRT assumptions were met for unidimensionality, local independen...

Purpose This study investigates the relationship among perceived satisfaction from social support, hope, and QOL of PLWHA. Method A cross-sectional in design was applied, among a sample of 160 HIV-infected persons receiving treatment,... more

Purpose This study investigates the relationship among perceived satisfaction from social support, hope, and QOL of PLWHA. Method A cross-sectional in design was applied, among a sample of 160 HIV-infected persons receiving treatment, care, and support from eight community-based NGOs. QOL was assessed using the WHO (QOL)-26 tool, and social support was assessed by use of a modified Sarason’s Social Support Questionnaire. A Hope Assessment Scale was also developed. Results The non-family support network was greater than family support network. Overall satisfaction from social support and hope was significantly correlated with QOL; the greatest effect of social support was on environmental functioning, and the lowest was on social relationships, emotional support was less a predictor of social relationship than other types of supports. Conclusion The effect of perceived satisfaction from social support was through the mediation variable hope. As it has widely been recognized that community-based support is vital for issues of quality of life, strategies to improve social support and hope intervention programs are strongly encouraged. The results of the study have implications for providing care, treatment, and psycho-social support to maintain or enhance quality of life of PLWHA.

Objective To test the reliability and validity of the Portuguese version of the Stroke Impact Scale 2.0 (SIS 2.0). Methods Two samples (N = 448 and N = 50) of stroke patients attending physical therapy were evaluated. The Portuguese... more

Objective To test the reliability and validity of the Portuguese version of the Stroke Impact Scale 2.0 (SIS 2.0). Methods Two samples (N = 448 and N = 50) of stroke patients attending physical therapy were evaluated. The Portuguese versions of the SIS 2.0 and Chedoke-McMaster Stroke Assessment (CMSA), and a set of individual patient characteristics were the measures used. Results Reliability was good with Cronbach’s alpha coefficients ranging from 0.83 to 0.96, and intraclass correlation coefficients (ICC) between 0.70 and 0.95 for the SIS 2.0 domains. Construct validity was supported by 6 predefined hypotheses involving expected correlations between SIS 2.0 domains, CMSA dimensions and age. An additional predefined hypothesis was also confirmed, with subjects without complications during hospitalization obtaining significantly higher scores in 7 of the 8 SIS 2.0 domains (P Conclusion The Portuguese SIS 2.0 evidenced suitable psychometric characteristics in terms of reliability and validity.

Several studies have shown that growth hormone deficiency in adults leads to poor well-being and other clinical consequences, and that these improve when the hormone is replaced. However, the studies employed generic measures of health... more

Several studies have shown that growth hormone deficiency in adults leads to poor well-being and other clinical consequences, and that these improve when the hormone is replaced. However, the studies employed generic measures of health status that miss important aspects of the patients' experience and that have inadequate reliability and responsiveness. This paper describes the European development and testing of the Quality of Life-Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA), a condition-specific quality of life measure for use in clinical trials and for the routine monitoring of patients. The instrument was produced in five languages; English, Swedish, Italian, German and Spanish. Each language version is shown to have good reliability, internal consistency and construct validity. The QoL-AGHDA is currently included in an international database monitoring the long-term efficacy and safety of growth hormone replacement therapy and in clinical trials in a numbe...

Background The SF36 Version 2 (SF36V2) is a revision of the SF36 Version 1, and is a widely used health status measure. It is important that guidelines for interpreting scores are available. Method A population sample of Australians (n =... more

Background The SF36 Version 2 (SF36V2) is a revision of the SF36 Version 1, and is a widely used health status measure. It is important that guidelines for interpreting scores are available. Method A population sample of Australians (n = 3015) weighted to achieve representativeness was administered the SF36V2. Comparisons between published US weights and sample derived weights were made, and Australian population norms computed and presented. Major findings Significant differences were observed on 7/8 scales and on the mental health summary scale. Possible causes of these findings may include different sampling and data collection procedures, demographic characteristics, differences in data collection time (1998 vs. 2004), differences in health status or differences in cultural perception of the meaning of health. Australian population norms by age cohort, gender and health status are reported by T-score as recommended by the instrument developers. Additionally, the proportions of cases within T-score deciles are presented and show there are important data distribution issues. Principal conclusions The procedures reported here may be used by other researchers where local effects are suspected. The population norms presented may be of interest. There are statistical artefacts associated with T-scores that have implications for how SF36V2 data are analysed and interpreted.

Health-related quality of life (HRQOL) is a valid marker of outcome for chronic dialysis therapy. A wide range of questionnaires are now available which assess different aspects of an individual's health. Appreciation of those factors... more

Health-related quality of life (HRQOL) is a valid marker of outcome for chronic dialysis therapy. A wide range of questionnaires are now available which assess different aspects of an individual's health. Appreciation of those factors that contribute to explaining HRQOL items remains poorly defined. The development of disease-specific questionnaires such as KDQOL-SF, should allow for such questions to be better answered. A cross-sectional analysis of our chronic dialysis population was made using the KDQOL-SF questionnaire. By multiple linear regression analysis demographic, clinical and dialysis-related factors were assessed for their contribution to the HRQOL in this population. The HRQOL of these patients was also compared against a general population sample. From a total of 190 chronic dialysis patients, 146 completed the KDQOL-SF questionnaire. The haemodialysis (HD) and peritoneal dialysis (PD) patients were similar with respect to most demographic, clinical and dialysis v...

Purpose It has been suggested that subjective measures of oral health are influenced by both individual and contextual characteristics. This study assessed the relationship between neighborhood and individual social networks and child... more

Purpose It has been suggested that subjective measures of oral health are influenced by both individual and contextual characteristics. This study assessed the relationship between neighborhood and individual social networks and child oral health-related quality of life (COHRQoL). Methods This study followed a cross-sectional design using a multistage sample of 478 children aged 1–5 years old. Caregivers completed the Brazilian version of the Early Childhood Oral Health Impact Scale (ECOHIS) and answered questions related to socioeconomic status and social network. The dental examination provided information on the prevalence of dental caries, dental trauma, and occlusion. Contextual social determinants included the presence of cultural community centers and of workers’ association in the neighborhood. Data analysis considered the total ECOHIS scores as the outcome and neighborhood/individual social networks as the independent variables. A multilevel Poisson regression model was used to investigate the association among individual and contextual characteristics and COHRQoL. Results Total ECOHIS scores ranged from 0 to 41 (possible range 0–52). The mean ECOHIS score was low (mean = 1.8, SD = 3.9), and the functional domain presented the highest mean impact on COHRQoL (mean = 0.5, SD = 1.4). Following adjusted analysis, low household income, visiting a neighbor less than once a month, the presence of anterior open bite, dental trauma, and dental caries were identified as individual determinants of negative impact on a child’s quality of life. These variables remained associated with the outcome even after adding the contextual-level variables in the model. At the contextual level, the presence of community cultural centers was associated with overall mean ECOHIS score; higher impacts on COHRQoL were observed in those living in neighborhoods without cultural community centers. Conclusion There is a significant association between individual and contextual social determinants and COHRQoL; unfavorable social conditions and poor socioeconomic status have a negative impact on caregiver reports of children’s oral health-related quality of life.

Heart transplantation is not simply a question of replacing an organ that no longer functions. The heart is often seen as source of love, emotions, and focus of personality traits. To gain insight into the problem of whether transplant... more

Heart transplantation is not simply a question of replacing an organ that no longer functions. The heart is often seen as source of love, emotions, and focus of personality traits. To gain insight into the problem of whether transplant patients themselves feel a change in personality after having received a donor heart, 47 patients who were transplanted over a period of 2 years in Vienna, Austria, were asked for an interview. Three groups of patients could be identified: 79% stated that their personality had not changed at all postoperatively. In this group, patients showed masslve defense and denial reactions, mainly by rapidly changing the subject or making the question ridiculous. Fifteen per cent stated that their personality had indeed changed, but not because of the donor organ, but due to the life-threatening event. Six per cent (three patients) reported a distinct change of personality due to their new hearts. These incorporation fantasies forced them to change feelings and reactions and accept those of the donor. Verbatim statements of these heart transplant recipients show that there seem to be severe problems regarding graft incorporation, which are based on the age-old idea of the heart as a centre that houses feelings and forms the personality.

The International Quality of Life Assesment (IQOLA) Project is a 4-year project to translate and adapt the widely used MOS SF-36 Health Survey Questionnaire in up to 15 countries and validate, norm, and document the new translations as... more

The International Quality of Life Assesment (IQOLA) Project is a 4-year project to translate and adapt the widely used MOS SF-36 Health Survey Questionnaire in up to 15 countries and validate, norm, and document the new translations as required for their use in international studies of health outcomes. In addition to the eight-scale SF-36 health profile, the project will also validate psychometrically based physical and mental health summary scores, as well as health utility indexes incorporating SF-36 scales for use in cost-utility studies.