Related Articles
This study evaluated the psychometric properties of the Engagement in Meaningful Activities Survey (EMAS) (Goldberg, Brintnell, & Goldberg, 2002) in a sample of older adults living in the greater Los Angeles area. The EMAS evidenced moderate test-retest reliability (r = .56) and good internal consistency (α = .89). Exploratory factor analysis (principal components) discerned a two-component structure within the EMAS, indicative of Personal-Competence and Social-Experiential meaning. The EMAS demonstrated theoretically predicted zero-order correlations with measures of meaning and purpose in life, depressive symptomology, life satisfaction, and health-related quality of life. Regression analyses discerned that purpose and meaning in life consistently predicted the EMAS and its components. Furthermore, persons reporting greater levels of Social-Experiential relative to Personal-Competence meaning had the lowest levels of physical health-related quality of life. This study offers initial evidence in support of the EMAS as a valid measure of meaningful activity in older adults.
doi:10.3928/15394492-20090518-01
PMCID: PMC3172818
PMID: 21927592
Measurement; Meaning and Purpose in Life; Health-Related Qualify of Life; Life Satisfaction
Background
Compounds that can act as agonists for toll-like receptors (TLRs) may be promising candidates for the development of drugs against infectious diseases and cancer. The present study aimed to characterize the immunomodulatory effects of P-MAPA on TLRs in vitro and in vivo, as well as to investigate its potential as adjuvant therapy in infectious diseases and cancer.
Methods
For these purposes, the activity of P-MAPA on TLRs was assayed in vitro through NF-κB activation in HEK293 cells expressing a given TLR, and using an in vivo animal model for bladder cancer (BC). The antimicrobial activity of P-MAPA was tested against Mycobacterium tuberculosis (TB) in vitro in an MIC assay, and in vivo using an aerosol infection model of murine tuberculosis. Antitumor effects of P-MAPA were tested in an animal model with experimentally induced BC. Moxifloxacin (MXF) and Bacillus Calmette-Guerin (BCG) were used as positive controls in the animal models.
Results
The results showed that P-MAPA, administered alone or in combination with MXF, induced significant responses in vivo against TB. In contrast, the compound did not show antimicrobial activity in vitro. P-MAPA showed a significant stimulatory effect on human TLR2 and TLR4 in vitro. In BC, TLR2, TLR4 and p53 protein levels were significantly higher in the P-MAPA group than in the BCG group. The most common histopathological changes in each group were papillary carcinoma in BC group, low-grade intraepithelial neoplasia in BCG group and simple hyperplasia in P-MAPA group. Concerning the toxicological analysis performed during BC treatment, P-MAPA did not show evidence for hepatotoxicity and nephrotoxicity.
Conclusions
In conclusion, P-MAPA acted as TLR ligand in vitro and improved the immunological status in BC, increasing TLR2 and TLR4 protein levels. P-MAPA immunotherapy was more effective in restoring p53 and TLRs reactivities and showed significantly greater antitumor activity than BCG. The activation of TLRs and p53 may provide a hypothetical mechanism for the therapeutic effects in both cancer and infectious diseases. Taken together data obtained will encourage the further investigation of P-MAPA as a potential candidate for the treatment of cancer and infectious diseases.
doi:10.1186/1750-9378-7-14
PMCID: PMC3408364
PMID: 22709446
Bacillus Calmette-Guerin; Immunotherapy; Toll-like receptor; p53; Infectious diseases; Mycobacterium tuberculosis; Bladder cancer.
Study objective: To investigate the relation between housing, socioeconomic status, and self reported general and mental health. This study is an empirical investigation of social and economic dimensions of housing, specifically, demand, control, and material (affordability, dwelling type) and meaningful (pride in dwelling, home as a refuge) dimensions of everyday life as they occur in the domestic environment.
Design: A cross sectional telephone survey was administered to a random sample of households. Survey items included measures of demand, control, and meaningfulness of the domestic environment, as well as standard measures of socioeconomic status and social support. Main outcome measures were self reported health (excellent, very good, good, fair, poor) and self reported frequency of feeling "downhearted and blue" in the two weeks before interview (from the Rand Mental Health Index).
Setting: Households (n=650) from 12 neighbourhood areas in the city of Vancouver, Canada.
Participants: One randomly selected adult from each of 650 households completed the interview and constitute the sample for this study.
Main results: In bivariate analyses, measures of housing demand, control and meaningfulness exhibited strong and significantly graded relations with self reported health and somewhat less strong relations with mental health. In logistic regression analyses housing demand and control variables made significant contributions to health both general and mental health. Respondents were more likely to report fair/poor health if they: reported that they couldn't stand to be at home sometimes (OR=2.29, p<0.05); rated their domestic housework as somewhat or quite a strain (OR=5.71, p<0.001); were somewhat or very dissatisfied with their social activities (OR=3.41, p<0.001); and reported that they were constantly under stress a good bit of the time or more (OR=3.56, p<0.05). In terms of mental health, respondents were more likely to report poorer mental health if they: lived longer in their neighbourhood (OR=1.05, p<0.05); reported their housework duties to be somewhat or quite a strain (OR=5.55, p<0.001); reported that they did not have somebody that could help them if they needed it (OR=9.28, p<0.001); and reported that they were constantly under stress a good bit of the time or more in the two weeks before the interview (OR=5.26, p<0.001). One of the main hypotheses investigated—that meaningful dimensions of housing are associated with health status—found support in bivariate analyses without controls, but did not contribute to multivariable models.
Conclusions: The influence of housing demand and control variables superseded a well known correlate of health status, educational attainment, attesting to their importance. The findings of this paper lend support to the hypothesis that features of the domestic environment, especially as they pertain to the exercise of control and the experience of demand, are significant predictors of self reported general and mental health status. Housing is a concrete manifestation of socioeconomic status, which has an important part to play in the development of explanations of the social production of health inequalities.
doi:10.1136/jech.56.9.671
PMCID: PMC1732232
PMID: 12177083
OBJECTIVE—To assess the feasibility, reliability, and validity of the time trade off (TTO) in patients with rheumatoid arthritis (RA).
METHODS—The TTO was applied in 194 patients with RA with increasing difficulty in performing activities of daily living. The test-retest reliability was determined in 35 of these patients and was calculated by the intraclass correlation coefficient (ICC). Construct validity was evaluated with the following sets of variables: measures of utility (rating scale), quality of life (RAND 36 item Health Status Survey (RAND-36) and RAQoL), functional status (Health Assessment Questionnaire, grip strength, and walk test), and disease activity (doctor's global assessment, disease activity score, pain, and morning stiffness).
RESULTS—Ten patients (5%) did not complete the TTO. The median value of the TTO was 0.77 (range 0.03-1.0). The test-retest ICC of the TTO was 0.85 (p<0.001). Construct validity testing of the TTO showed poor to moderate correlations (Spearman's rs between 0.19 and 0.36, p<0.01) with all outcome measures except for the subscale role limitation (physical problem) of the RAND-36, the walk test, the doctor's global assessment of disease activity, and morning stiffness. Multiple regression analysis showed that only 17% of the variance of the TTO scores could be explained.
CONCLUSIONS—The TTO method appeared to be feasible and reliable in patients with RA. The poor to moderate correlations of the TTO with measures of quality of life, functional ability, and disease activity suggest that the TTO considers additional attributes of health status. This may have implications for the application of the TTO in clinical trials in patients with RA.
doi:10.1136/ard.59.11.892
PMCID: PMC1753018
PMID: 11053068
The intestinal flora of mammals contains lactic acid bacteria (LAB) that may provide positive health effects for the host. Such bacteria are referred to as probiotic bacteria. From a pig, we have isolated a Lactobacillus reuteri strain that produces an antimicrobial peptide (AMP). The peptide was purified and characterized, and it was unequivocally shown that the AMP was a well-defined degradation product obtained from the mucus adhesion-promoting protein (MapA); it was therefore termed AP48-MapA. This finding demonstrates how large proteins might inherit unexpected pleiotropic functions by conferring antimicrobial capacities on the producer. The MapA/AP48-MapA system is the first example where a large protein of an intestinal LAB is shown to give rise to such an AMP. It is also of particular interest that the protein that provides this AMP is associated with the binding of the bacterium producing it to the surface/lining of the gut. This finding gives us new perspective on how some probiotic bacteria may successfully compete in this environment and thereby contribute to a healthy microbiota.
doi:10.1128/AEM.01423-10
PMCID: PMC2976255
PMID: 20833791
This paper presents a situation specific theory—the Midlife Women's Attitudes toward Physical Activity (MAPA) theory—that explains how women's attitudes toward physical activity influence their participation in physical activity. Using the integrative approach of Im, the theory was developed based on the Attitude, Social Influence, and Self Efficacy Model, a review of the related literature, and a study of women's attitudes toward physical activity. As a situation-specific theory, the MAPA theory can be easily linked to nursing practice and research projects related to physical activity in midlife women, especially interventions aimed at increasing midlife women's participation in physical activity.
doi:10.1016/j.outlook.2009.07.001
PMCID: PMC2830712
PMID: 20113755
Situation-specific theory; midlife women; attitudes toward physical activity
Quality of life is an important outcome measurement in objectifying the current health status or therapy effects in patients with oropharyngeal dysphagia. In this study, the validity and reliability of the Dutch version of the Deglutition Handicap Index (DHI) and the MD Anderson Dysphagia Inventory (MDADI) have been determined for oncological patients with oropharyngeal dysphagia. At Maastricht University Medical Center, 76 consecutive patients were selected and asked to fill in three questionnaires on quality of life related to oropharyngeal dysphagia (the SWAL-QOL, the MDADI, and the DHI) as well as a simple one-item visual analog Dysphagia Severity Scale. None of the quality-of-life questionnaires showed any floor or ceiling effect. The test-retest reliability of the MDADI and the Dysphagia Severity Scale proved to be good. The test-retest reliability of the DHI could not be determined because of insufficient data, but the intraclass correlation coefficients were rather high. The internal consistency proved to be good. However, confirmatory factor analysis could not distinguish the underlying constructs as defined by the subscales per questionnaire. When assessing criterion validity, both the MDADI and the DHI showed satisfactory associations with the SWAL-QOL (reference or gold standard) after having removed the less relevant subscales of the SWAL-QOL. In conclusion, when assessing the validity and reliability of the Dutch version of the DHI or the MDADI, not all psychometric properties have been adequately met. In general, because of difficulties in the interpretation of study results when using questionnaires lacking sufficient psychometric quality, it is recommended that researchers strive to use questionnaires with the most optimal psychometric properties.
doi:10.1007/s00455-011-9327-3
PMCID: PMC3224721
PMID: 21279522
Dysphagia; Deglutition disorders; Quality of life; Validity; Reliability; Head and neck cancer; Deglutition
Limb amputation is a life-changing event that signifies long-term physical, social, psychological, and environmental change. Spiritual well-being in patients plays a significant role in coping and may affect outcomes of patients with limb loss. The objective of this study was to describe the role of spirituality in individuals with limb amputation and to determine whether spirituality is related to the quality of life (QOL) in this sample. Study participants were recruited through prosthetists, physicians, amputee support groups, the Amputee Coalition of America, and amputee listserv discussion groups in the United States and Canada. Participants completed questionnaires containing measures of satisfaction with life, general health, mobility, and social integration. A quantitative descriptive research design was used to examine the relationships between existential spirituality (belief that one's life is meaningful or has purpose) and religious spirituality and QOL among individuals with limb amputation. A prospective study of 108 patients with a history of limb amputation was performed. The study population consisted of 66.3% males and 33.7% females. Most patients were Caucasian (96.2%). Of the 108 participants, 86 (79.6%) were 41 years of age or older with a mean of 18 years since amputation. The most frequent cause of amputation was trauma (55.6%) and the most common location of amputation was below-the-knee (49.1%). Existential spirituality, female gender, and age above 50 years related to higher QOL in patients with a history of limb amputation. The findings of this research confirmed that amputees use spirituality to cope with limb amputation. Existential spirituality was a significant predictor of satisfaction with life, general health, and social integration.
doi:10.1055/s-0032-1304275
PMCID: PMC3444036
PMID: 23449135
quality of life; spirituality; well-being; coping; spirituality; limb amputation
M Conner, senior lecturer
P Norman, senior lecturer
D Willits, general practitioner
I Porter, research and development head
Background—In order that patient satisfaction may be assessed in a meaningful way, measures that are valid and reliable are required. This study was undertaken to assess the construct validity and internal reliability of the previously developed Patient Satisfaction Questionnaire (PSQ).
Method—A total of 1390 patients from five practices in the North of England, the Midlands, and Scotland completed the questionnaire. Responses were checked for construct validity (including confirmatory factor analysis to check the factor structure of the scale) and internal reliability.
Results—Confirmatory factor analysis showed that items loaded on the appropriate factors in a five factor model (doctors, nurses, access, appointments, and facilities). Scores on the specific subscales showed highly significant positive correlations with general satisfaction subscale scores suggesting construct validity. Also, the prediction (derived from past research) that older people would be more satisfied with the service was borne out by the results (F (4, 1312) = 57.10; p<0.0001), providing further construct validation. The five specific subscales (doctors, nurses, access, appointments, and facilities), the general satisfaction subscale, and the questionnaire as a whole were found to have high internal reliability (Cronbach's α = 0.74–0.95).
Conclusion—The results suggest that the PSQ is a valid and internally reliable tool for assessing patient satisfaction with general practitioner services.
(Quality in Health Care 2000;9:210–215)
Key Words: patient satisfaction; general practitioner services; questionnaire construction; construct validity; reliability
doi:10.1136/qhc.9.4.210
PMCID: PMC1743536
PMID: 11101705
Background
Patients with irritable bowel syndrome with diarrhoea (IBS-D) experience restriction in daily activities and decreased health-related quality of life (QOL).
Aim
To investigate effects of alosetron on patient-reported health-related QOL, satisfaction and productivity in women with severe IBS-D.
Methods
A total of 705 women (severe IBS-D, Rome II criteria) randomised to alosetron 0.5 mg QD, 1 mg QD, 1 mg BID, or placebo for 12 weeks were studied. IBSQOL, treatment satisfaction, daily activities, and lost workplace productivity (LWP) were evaluated at randomisation and Week 12.
Results
One or more doses of alosetron significantly improved all IBSQOL domains except for sexual function from baseline vs. placebo. The magnitude of IBSQOL changes was consistent with a clinically meaningful effect. Alosetron 0.5 mg QD and 1 mg BID significantly reduced IBS interference with social/leisure activities and LWP from baseline vs. placebo [social/leisure (mean ±S.E.) days lost: −6.7 ± 0.8, −7.0 ± 0.9, P < 0.01; LWP (mean ± S.E.) h lost: −11.0 ± 3.3, −21.1 ± 4.1, P < 0.05 respectively]. Significantly more patients treated with alosetron reported satisfaction vs. placebo. Improvements in IBSQOL, LWP, and treatment satisfaction significantly correlated with global improvement of IBS symptoms. The incidence of adverse events with alosetron was low with constipation being the most commonly reported event. A single case of ischaemic colitis occurred, in a patient receiving alosetron 0.5 mg QD.
Conclusions
In women with severe IBS-D, alosetron treatment, including 0.5 mg QD, resulted in statistically significant and clinically relevant improvements in health-related QOL, restriction of daily activities and treatment satisfaction over placebo. IBS symptom improvement corresponded with positive changes in IBSQOL, LWP and treatment satisfaction.
doi:10.1111/j.1365-2036.2012.05208.x
PMCID: PMC3464357
PMID: 22779693
Rourke, Sean B. | Bekele, Tsegaye | Tucker, Ruthann | Greene, Saara | Sobota, Michael | Koornstra, Jay | Monette, LaVerne | Bacon, Jean | Bhuiyan, Shafi | Rueda, Sergio | Watson, James | Hwang, Stephen W. | Dunn, James | Hambly, Keith
Although lack of housing is linked with adverse health outcomes, little is known about the impacts of the qualitative aspects of housing on health. This study examined the association between structural elements of housing, housing affordability, housing satisfaction and health-related quality of life over a 1-year period. Participants were 509 individuals living with HIV in Ontario, Canada. Regression analyses were conducted to examine relationships between housing variables and physical and mental health-related quality of life. We found significant cross-sectional associations between housing and neighborhood variables—including place of residence, housing affordability, housing stability, and satisfaction with material, meaningful and spatial dimensions of housing—and both physical and mental health-related quality of life. Our analyses also revealed longitudinal associations between housing and neighborhood variables and health-related quality of life. Interventions that enhance housing affordability and housing satisfaction may help improve health-related quality of life of people living with HIV.
doi:10.1007/s10461-012-0284-0
PMCID: PMC3481053
PMID: 22903401
Housing; Housing affordability; Housing satisfaction; Health-related quality of life; HIV
Objective
This study examines the sex-specific association between alcohol intake and health-related quality of life in middle class community-dwelling older adults.
Methods
Information on alcohol intake and measures of quality of life were obtained from 1594 participants (n=633 men, n=961 women) aged 50–97 years during a research clinic visit in 1992–96, and from their responses to a phone interview and mailed questionnaires. Quality of life measures included the Medical Outcome Study Short Form 36 (SF-36), Quality of Well-Being Scale (QWB), Life Satisfaction Index-Z (LSI-Z), and Satisfaction with Life Survey (SWLS). Depressed mood was assessed using the Beck Depression Inventory (BDI). Men and women were stratified into 4 groups of reported alcohol intake: nondrinker, occasional drinker (alcohol <3 times/week), light regular drinker (alcohol intake ≥3 times/week, but <170g/wk), and moderate regular drinker (alcohol intake ≥3 times/week and ≥ 170g/week).
Results
Average age of both sexes was 72±10 years. Only 11% of the men and 17% of the women were nondrinkers; 54% of men and 40% of women reported drinking alcohol ≥3 times per week; 18% of men and 7.5% of women were heavier regular drinkers. In multivariable regression analyses, increasing frequency of alcohol use was positively associated with better quality of life in men and in women. Associations were not explained by age, physical activity, smoking, depressed mood, or common chronic diseases including diabetes, hypertension and cardiovascular disease.
Conclusions
Regular alcohol consumption is associated with increased quality of life in older men and women.
doi:10.1016/j.maturitas.2009.01.005
PMCID: PMC2681249
PMID: 19232847
Moraxella catarrhalis O35E was shown to synthesize a 105-kDa protein that has similarity to both acid phosphatases and autotransporters. The N-terminal portion of the M. catarrhalis acid phosphatase A (MapA) was most similar (the BLAST probability score was 10−10) to bacterial class A nonspecific acid phosphatases. The central region of the MapA protein had similarity to passenger domains of other autotransporter proteins, whereas the C-terminal portion of MapA resembled the translocation domain of conventional autotransporters. Cloning and expression of the M. catarrhalis mapA gene in Escherichia coli confirmed the presence of acid phosphatase activity in the MapA protein. The MapA protein was shown to be localized to the outer membrane of M. catarrhalis and was not detected either in the soluble cytoplasmic fraction from disrupted M. catarrhalis cells or in the spent culture supernatant fluid from M. catarrhalis. Use of the predicted MapA translocation domain in a fusion construct with the passenger domain from another predicted M. catarrhalis autotransporter confirmed the translocation ability of this MapA domain. Inactivation of the mapA gene in M. catarrhalis strain O35E reduced the acid phosphatase activity expressed by this organism, and this mutation could be complemented in trans with the wild-type mapA gene. Nucleotide sequence analysis of the mapA gene from six M. catarrhalis strains showed that this protein was highly conserved among strains of this pathogen. Site-directed mutagenesis of a critical histidine residue (H233A) in the predicted active site of the acid phosphatase domain in MapA eliminated acid phosphatase activity in the recombinant MapA protein. This is the first description of an autotransporter protein that expresses acid phosphatase activity.
doi:10.1128/JB.01688-07
PMCID: PMC2238212
PMID: 18065547
The question of whether genetic carrier testing should be performed on children has been the subject of much debate. However, one important element has been lacking from this debate. There has been practically no knowledge of how those tested in childhood have experienced carrier testing. Twenty three subjects in families affected by Duchenne muscular dystrophy and 23 in families affected by haemophilia A, all of whom had been tested during childhood for carriership in the Department of Medical Genetics, University of Helsinki, from 1984 to 1988, participated in our study. We investigated long term psychosocial consequences of carrier testing in childhood. A questionnaire relating to sociodemographic background and life situation was used, together with assessment of health related quality of life (HRQOL) using the RAND 36 item Health Survey 1.0 (RAND). RAND results showed that the emotional, social, and physical well being of the young female subjects was not statistically different from those of control female subjects at a similar age. We also found no statistically significant differences in means in any RAND dimension (p<0.146) between carriers, non-carriers, and a group in which carrier status was uncertain. However, two out of seven carriers reported that they were worried and three that they were slightly worried about the test result. Four out of 22 young female subjects in the uncertain group reported being worried and 11 reported being slightly worried.
Keywords: carrier testing in childhood; health related quality of life; psychosocial consequences; RAND
PMCID: PMC1762976
PMID: 10465112
OBJECTIVE
To evaluate, by means of the Inflammatory Bowel Disease Questionnaire (IBDQ), the quality of life of ulcerative colitis patients submitted to proctocolectomy with sphincter preservation using J-pouch reconstruction over ten years ago.
METHODS
The study consisted of 36 patients interviewed using the Inflammatory Bowel Disease Questionnaire. The score scale, resulting from the addition of each answer, ranged from 32 to 224, where the highest score indicates the best quality of life. The chi square test was used to verify the existence of meaningful differences between the results of the questionnaire and age, and gender proportion. For each section, as well as for all of them combined, the Kruskal-Wallis test was used to verify if there were differences in the Inflammatory Bowel Disease Questionnaire scores among the groups in relation to the proportions.
RESULTS
After applying the Inflammatory Bowel Disease Questionnaire, it was determined that quality of life was considered excellent for 9 (25%), good for 11 (30.6%), regular for 13 (36.1%), and bad for 3 (8.3%) patients. In our study, we determined that 85% of the patients were pleased with and thankful for the surgery that they underwent.
CONCLUSION
We can conclude that the possibility of sphincter preservation should always be taken into account, since patients remain clinically stable and have a high quality of life even after long periods.
doi:10.1590/S1807-59322009000900008
PMCID: PMC2745133
PMID: 19759881
Quality of life; Patient satisfaction; Follow-up studies; Ulcerative Colitis/surgery; Restorative proctocolectomy/methods
Purpose
To identify the domains of quality of life important to people with mental health problems.
Method
A systematic review of qualitative research undertaken with people with mental health problems using a framework synthesis.
Results
We identified six domains: well-being and ill-being; control, autonomy and choice; self-perception; belonging; activity; and hope and hopelessness. Firstly, symptoms or ‘ill-being’ were an intrinsic aspect of quality of life for people with severe mental health problems. Additionally, a good quality of life was characterised by the feeling of being in control (particularly of distressing symptoms), autonomy and choice; a positive self-image; a sense of belonging; engagement in meaningful and enjoyable activities; and feelings of hope and optimism. Conversely, a poor quality life, often experienced by those with severe mental health difficulties, was characterized by feelings of distress; lack of control, choice and autonomy; low self-esteem and confidence; a sense of not being part of society; diminished activity; and a sense of hopelessness and demoralization.
Conclusions
Generic measures fail to address the complexity of quality of life measurement and the broad range of domains important to people with mental health problems.
doi:10.1186/1477-7525-10-138
PMCID: PMC3563466
PMID: 23173689
Quality of life; Mental health; Well-being; Ill-being; Functioning; Outcomes
It is likely that with aging and changing life circumstances, individuals' values shift in systematic ways, and that these shifts may be accompanied by shifts in the determinants of their subjective judgments of well being. To examine this possibility, the relations among the Satisfaction With Life Scale (SWLS) and a number of personality, affect, demographic, and cognitive variables were examined in a sample of 818 participants between the ages of 18 and 94. The results indicated that although many variables had significant zero-order correlations with the SWLS, only a few variables had unique utility in predicting life satisfaction. Invariance analyses indicated that while the qualitative nature of life satisfaction remains constant across adult age, the influence of fluid intelligence on judgments of life satisfaction declines with age. In contrast, negative affect is negatively associated with life satisfaction consistently across the adult age span.
doi:10.1080/17439760701834602
PMCID: PMC2768364
PMID: 19865605
Satisfaction With Life Scale; subjective well-being; aging; invariance; structural equation modeling
Objective
To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD).
Design, Setting, and Participants
The PedsQL™ 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (aged 8-18 years, child self-report) with SCD (100 sickle cell anemia [SS], 24 sickle beta zero thalassemia [Sβ0thal]) and their parents (parent-proxy report). Summary scores for children’s and parents’ ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared to published data for healthy children. Both summary and subscale scores for children with SCD were also compared to those of their parents.
Results
Children with SCD and their parents rated overall HRQOL and all sub-domains of HRQOL lower than ratings of healthy children and their parents (p < .001). Children with SCD rated their own HRQOL significantly better than their parents for overall HRQOL and all sub-domains (p <.001) except emotional functioning (p = .06).
Conclusions
Children with SCD and their parents perceived overall HRQOL and all HRQOL sub-domains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD.
doi:10.1016/j.pedhc.2009.12.006
PMCID: PMC3124665
PMID: 21700135
Quality of Life; Health Related Quality of Life; Sickle Cell Disease; Chronic Illness; Children and Adolescents
BACKGROUND
Existing health-related quality-of-life (HRQOL) tools do not appear to capture patients' specific skin cancer concerns.
OBJECTIVE
To describe the conceptual foundation, item generation, reduction process, and reliability testing for the Facial Skin Cancer Index (FSCI), a HRQOL outcomes tool for skin cancer researchers and clinicians.
METHODS
Participants in Phases I to III consisted of adult patients (N = 134) diagnosed with biopsy-proven nonmelanoma cervicofacial skin cancer. Data were collected via self-report surveys and clinical records.
RESULTS
Seventy-one distinct items were generated in Phase I and rated for their importance by an independent sample during Phase II; 36 items representing six theoretical HRQOL domains were retained. Test–retest I results indicated that four subscales showed adequate reliability coefficients (α = 0.60 to 0.91). Twenty-six items remained for test–retest II. Results indicated excellent internal consistency for emotional, social, appearance, and modified financial/work subscales (range 0.79 to 0.95); test–retest correlation coefficients were consistent across time (range 0.81 to 0.97; lifestyle omitted).
CONCLUSION
Pretesting afforded the opportunity to select items that optimally met our a priori conceptual and psychometric criteria for high data quality. Phase IV testing (validity and sensitivity before surgery and 4 months after Mohs micrographic surgery) for the 20-item FSCI is under way.
doi:10.1111/j.1524-4725.2006.32197.x
PMCID: PMC1810190
PMID: 16875475
The patients' perspective of antipsychotic treatment was largely neglected for a long period. It has only been during the last 10 years, with the development of atypical antipsychotics, that scientific interest in this issue has markedly increased. Numerous studies have shown that the majority of schizophrenic patients are able to fill out a self-rating scale in a meaningful way, and several self-report scales with sufficient internal consistency and good construct validity have been developed. The effects of antipsychotic treatment on psychopathology and on subjective well-being (SW) are not strongly related; the perspectives of the patient and his/her psychiatrist markedly differ. Recent research indicates that SW/quality of life, much more improved by atypical than by typical antipsychotics, has a strong impact on compliance, as well as on the chance of achieving remission. The data strongly suggest that a systematic evaluation of the patient's perspective of antipsychotic treatment is meaningful and necessary to increase compliance, functional outcome, and long-term prognosis.
PMCID: PMC3181761
PMID: 16640124
subjective well-being; schizophrenia; antipsychotic; atypical antipsychotic; remission
Background
Health status is one of the basic factors of a high quality of life and the problem of the acceptance of illness is important for adaptation to the limitations imposed by it. The purpose of the study was the evaluation of the quality of life, satisfaction with life and the acceptance of illness by malaria patients, as well as the discovery of a relationship between studied parameters.
Methods
The study was undertaken in August 2010, on 120 Nigerian patients with confirmed malaria. A method of diagnostic survey, based on standardized scales - Acceptance of Illness Scale, The Satisfaction With Life Scale and a standardized survey questionnaire World Health Organization Quality of Life/BREF - was used in this study. Descriptive statistics, variability range, 95% confidence interval, correlation analysis, Spearman’s non-parametric correlation coefficient, Mann–Whitney test and Kruskal-Wallis test were applied and the, so called, test statistics was calculated, followed by the calculation of the test probability p. Results of analyses were presented in a box graph, and a graph of dispersion.
Results
A dominating share in the adjective scale of the AIS scale was the category of “no acceptance”, given by 71.7% of respondents. The average level of a “somatic domain” was 41.7, and of a “social domain” was 62.8. The mean satisfaction of life evaluation in the SWLS scale was 18 points. The correlation between acceptance of the disease and quality of life for the psychological domain was 0.39***, and between acceptance of the disease and satisfaction with life was 0.40***. The correlation between satisfaction with life and quality of life for the psychological domain was 0.65***, and between satisfaction with life and quality of life for the environment domain was 0.60***. The mean level of AIS for the studied population of men was 16.5, and test probability: p = 0.0014**, and for the environment domain the level was 50, and the test probability: p = 0.0073**. For quality of life in the social sphere the test probability: p = 0.0013** in relatively older individuals.
Conclusion
The majority of people do not accept their condition. Evaluation of the quality of life was the highest in the social domain, and the lowest in the somatic domain. There is a statistically significant correlation between the level of acceptance of illness and the quality of life and satisfaction with life. The strongest correlation is found between satisfaction with life and the evaluation of the quality of life in psychological and environmental domains. Men evaluate their quality of life in the environmental domain higher and demonstrate a higher acceptance of their disease. There is a correlation regarding a significantly higher quality of life in the social sphere in relatively older people.
doi:10.1186/1475-2875-11-171
PMCID: PMC3386889
PMID: 22616635
Malaria; Quality of life; Satisfaction with life; Acceptance of the disease
Background
The aim of the study was to validate the Norwegian version of a self-administered 43-item questionnaire designed to assess quality of life in kidney transplant recipients, the End-Stage Renal Disease Symptom Checklist – Transplantation Module (ESRD-SCL).
Methods
In total, 53 kidney transplant recipients from one university-affiliated hospital responded to a questionnaire including the ESRD-SCL and the Short Form 36 (SF-36). We assessed internal consistency reliability and test-retest reliability with 2 weeks between assessments. Construct validity was assessed by correlations of the ESRD-SCL subscales with related and unrelated SF-36 scales, demographic, and clinical characteristics.
Results
Subscales of the ESRD-SCL showed good internal consistency reliability (Cronbach's = 0.72–0.81) and for the aggregate total scale α was 0.94. Test-retest reliability median 14 days apart was excellent with intraclass coefficients ranging from 0.87 to 0.95. The pattern of correlations of the ESRD-SCL scales with related and unrelated scales SF-36 scales and demographic and clinical characteristics gave support to the construct validity of the ESRD-SCL.
Conclusion
The Norwegian translation of the ESRD-SCL showed satisfactory internal consistency reliability, test-retest reliability and construct validity, at the level of the original German version.
doi:10.1186/1471-2369-7-17
PMCID: PMC1660533
PMID: 17109746
Objective
To identify the relationship between spasticity and life satisfaction as measured by 3 multi-item factor scales and a rating of overall quality of life among participants with spinal cord injury (SCI).
Study Design
Cross-sectional survey; secondary analysis of existing data by linear regression analysis between spasticity and quality of life.
Setting
Large specialty hospital in the Southeastern United States.
Methods
Participants included 1,549 adults with traumatic spinal cord injuries, at least 18 years of age and a minimum of 1 year post-injury at survey. Outcome measures included: (1) Home Life Satisfaction, (2) Global Satisfaction, (3) Vocational Satisfaction, (4) Overall Quality of Life and (5) three subscales from the Patient Reported Impact of Spasticity Measure.
Results
Three aspects of spasticity (Daily Activities, Positive Impact, and spasticity at its worst) all were negatively correlated with Home Life Satisfaction, Global Satisfaction, and Overall Quality of Life. Only the Daily Activities scale and the spasticity at its worst rating had a significant negative correlation with Vocational Satisfaction.
Conclusion
Spasticity is negatively associated with quality of life after SCI. These negative outcomes need to be considered in an individual’s rehabilitation and treatment methods.
doi:10.1038/sc.2011.49
PMCID: PMC3166438
PMID: 21606929
spinal cord injury; spasticity; life satisfaction; quality of life
Porter, Anna | Fischer, Michael J. | Brooks, Deborah | Bruce, Marino | Charleston, Jeanne | Cleveland, William H. | Dowie, Donna | Faulkner, Marquetta | Gassman, Jennifer | Greene, Tom | Hiremath, Leena | Kendrick, Cindy | Kusek, John W. | Thornley-Brown, Denyse | Wang, Xuelei | Norris, Keith | Unruh, Mark | Lash, James
Health-related quality of life (HRQOL) is poorly understood in patients with chronic kidney disease (CKD) prior to end-stage renal disease. The association between psychosocial measures and HRQOL has not been fully explored in CKD, especially in African Americans. We performed a cross-sectional analysis of HRQOL and its association with sociodemographic and psychosocial factors in African Americans with hypertensive CKD.
There were 639 participants in the African American Study of Kidney Disease and Hypertension Cohort Study. The Short Form-36 was used to measure HRQOL. The Diener Satisfaction with Life Scale measured life satisfaction, the Beck Depression Inventory-II assessed depression, the Coping Skills Inventory-Short Form measured coping, and the Interpersonal Support Evaluation List-16 was used to measure social support.
Mean participant age was 60 years at enrollment, and 61% were male. Forty-two percent reported a household income below $15,000/year. Higher levels of social support, coping skills, and life satisfaction were associated with higher HRQOL, while unemployment and depression were associated with lower HRQOL (p<0.05). There was a significant positive association between higher estimated glomerular filtration rate (eGFR) with the Physical Health Composite (PHC) score (p=0.004) but not the Mental Health Composite (MHC) score (p=0.24).
Unemployment was associated with lower HRQOL, and lower eGFR was associated with lower PHC. African Americans with hypertensive CKD with better social support and coping skills had higher HRQOL. This study demonstrates an association between CKD and low HRQOL and highlights the need for longitudinal studies to further examine this association.
doi:10.1016/j.trsl.2011.09.004
PMCID: PMC3240805
PMID: 22153804
Background
The Osteoporosis Patient Satisfaction Questionnaire (OPSAT-Q) is a new measure of patient satisfaction with bisphosphonate treatment for osteoporosis. The objective of this study was to evaluate the psychometric characteristics of the OPSAT-Q.
Methods
The OPSAT-Q contains 16 items in four subscales: Convenience, Confidence with Daily Activities, Side Effects, and Overall Satisfaction. All four subscale scores and an overall composite satisfaction score (CSS) can be computed. The OPSAT-Q, Osteoporosis Targeted Quality of Life (OPTQoL), and sociodemographic/clinical questionnaires, including 3 global items on convenience, functioning and side effects, were self-administered to women with osteoporosis or osteopenia recruited from four US clinics. Analyses included item and scale performance, internal consistency reliability, reproducibility, and construct validity. Reproducibility was measured using the intraclass correlation coefficient (ICC) via a follow-up questionnaire completed by participants 2 weeks post baseline.
Results
104 women with a mean age of 65.1 years participated. The majority were Caucasian (64.4%), living with someone (74%), and not currently employed (58.7%). 73% had osteoporosis and 27% had osteopenia. 80% were taking weekly bisphosphonates and 18% were taking daily medication (2% missing data). On a scale of 0–100, individual patient subscale scores ranged from 17 to 100 and CSS scores ranged from 44 to 100. All scores showed acceptable internal consistency reliability (Cronbach's alpha > 0.70) (range 0.72 to 0.89). Reproducibility ranged from 0.62 (Daily Activities) to 0.79 (Side Effects) for the subscales; reproducibility for the CSS was 0.81. Significant correlations were found between the OPSAT-Q subscales and conceptually similar global measures (p < 0.001).
Conclusion
The findings from this study confirm the validity and reliability of the OPSAT-Q and support the proposed composition of four subscales and a composite score. They also support the use of the OPSAT-Q to examine the impact of bisphosphonate dosing frequency on patient satisfaction.
doi:10.1186/1477-7525-4-42
PMCID: PMC1550233
PMID: 16834773