PMCC PMCC

Search tips
Search criteria

Advanced
Results 1-25 (1464)
 

Clipboard (0)
None

Select a Filter Below

Journals
Year of Publication
more »
1.  Symptoms and markers of symptom severity in asthma—content validity of the asthma symptom diary 
Background and objectives
The American Thoracic Society/European Respiratory Society (ATS/ERS) Task Force acknowledged the multi-faceted nature of asthma in its recent definition of asthma control as a summary term capturing symptoms, reliever use, frequency/severity of exacerbations, lung function, and future risk and the Global Initiative for Asthma (GINA) defines the clinical manifestations (well established markers of asthma severity) of asthma to include symptoms, sleep disturbances, limitations of daily activity, impairment of lung function, and use of rescue medications. The objectives of this qualitative work were to identify symptoms and markers of symptom severity relevant to patients with moderate to severe asthma and to evaluate the content validity of the asthma symptom diary (ASD).
Methods
A qualitative interview study was conducted using a purposive sample of symptomatic adult and adolescent (≥12 years) subjects with asthma. Concept elicitation (CE) interviews (n = 50) were conducted to identify core asthma symptoms and symptom-related clinical markers, followed by cognitive interviews (n = 24) to ensure patient comprehension of the items, instructions and response options. CE interviews were coded using ATLAS.ti for content analysis.
Results
The study sample had a diverse range of symptom severity, level of symptom control, sociodemographic and socioeconomic status. The most frequently reported symptoms in adults were chest tightness (n = 33/34; 97.1%), wheezing (n = 31; 91.2%), coughing (n = 30; 88.2%), and shortness of breath (n = 25; 73.5%); in adolescents they were wheezing (n = 14/16; 87.5%), coughing (n = 13; 81.3%), and chest tightness (n = 11; 68.8%). Adults identified chest tightness followed by shortness of breath as their most severe symptoms; while adolescents reported coughing and chest tightness as their most severe symptoms. Sleep awakenings and limitations in day-to-day activities were frequent symptom-related clinical markers. Day-to-day variability and differences between daytime and nighttime symptom experiences reported by subjects resulted in the need for the ASD to be administered twice daily. Cognitive interviews indicated that subjects found the revised ASD items clear and easy to understand.
Conclusions
This study supports the content validity of the revised ASD, showing it to be consistent with patient experiences and ready for further psychometric testing.
doi:10.1186/s12955-015-0217-5
PMCID: PMC4336744
Asthma; Symptoms; Patient-reported outcome; Instrument development; Qualitative
2.  Self-perception and quality of life among overweight and obese rural housewives in Kelantan, Malaysia 
Introduction
Obesity, in the past was perceived to be the problem of the rich, but recent studies have reported that the problem of obesity is a worldwide problem and rural population is no less affected. Self-perceived health and weight appropriateness is an important component of weight-loss and eating behaviors and may be mediated by local, social and cultural patterning. In addition to the quality of life assessment, it should therefore be an important focal point for the design and implementation of clinical and public health policies.
Methods
The present study was carried out to assess the self-perception of weight appropriateness as well as the quality of life of overweight and obese individual among the rural population particularly among housewives. A total of 421 respondents participated in the study which consisted of 36.6% in the overweight and 63.4% in the obese categories.
Results
the analysis of the survey revealed that self-perception regarding obesity among respondents show common similarities, particularly in self reporting on health, dietary habit and also the concept of beauty and a beautiful body. Character and behavior are highly regarded in evaluating a person’s self-worth in society. The results on the quality of life using the ORWELL 97 instrument show that the quality of life of respondents was moderate. Most of the respondents were aware of their body weight and indicated an intention to lose weight but also reported themselves as healthy or very healthy.
Conclusion
The results of the survey indicated that perception on obesity did not differed very much between respondents, in fact there existed a lot of similarities in their perception about health, quality of life, personal health and self-satisfaction with own body. However, their quality of life was within the normal or moderate level based on the ORWELL 97 assessment. Even though most of the respondents were aware of their body weight and indicated an intention to lose weight they also reported themselves as healthy or very healthy, suggesting that public health messages intended for rural housewives need to be more tailored to health-related consequences of fatness.
doi:10.1186/s12955-015-0210-z
PMCID: PMC4328071
Overweight; Obesity; Quality of life; Self-perception; Rural housewives
3.  Multidimensional fatigue inventory and post-polio syndrome – a Rasch analysis 
Background
Fatigue is a common symptom in post-polio syndrome (PPS) and can have a substantial impact on patients. There is a need for validated questionnaires to assess fatigue in PPS for use in clinical practice and research. The aim with this study was to assess the validity and reliability of the Swedish version of Multidimensional Fatigue Inventory (MFI-20) in patients with PPS using the Rasch model.
Methods
A total of 231 patients diagnosed with PPS completed the Swedish MFI-20 questionnaire at post-polio out-patient clinics in Sweden. The mean age of participants was 62 years and 61% were females. Data were tested against assumptions of the Rasch measurement model (i.e. unidimensionality of the scale, good item fit, independency of items and absence of differential item functioning). Reliability was tested with the person separation index (PSI). A transformation of the ordinal total scale scores into an interval scale for use in parametric analysis was performed. Dummy cases with minimum and maximum scoring were used for the transformation table to achieve interval scores between 20 and 100, which are comprehensive limits for the MFI-20 scale.
Results
An initial Rasch analysis of the full scale with 20 items showed misfit to the Rasch model (p < 0.001). Seven items showed slightly disordered thresholds and person estimates were not significantly improved by rescoring items. Analysis of MFI-20 scale with the 5 MFI-20 subscales as testlets showed good fit with a non-significant x2 value (p = 0.089). PSI for the testlet solution was 0.86. Local dependency was present in all subscales and fit to the Rasch model was solved with testlets within each subscale. PSI ranged from 0.52 to 0.82 in the subscales.
Conclusions
This study shows that the Swedish MFI-20 total scale and subscale scores yield valid and reliable measures of fatigue in persons with post-polio syndrome. The Rasch transformed total scores can be used for parametric statistical analyses in future clinical studies.
doi:10.1186/s12955-015-0213-9
PMCID: PMC4331415
Fatigue; MFI-20; Post-polio; Rasch analysis
4.  Confirmatory factor analysis of the Korean version of the short-form McGill pain questionnaire with chronic pain patients: a comparison of alternative models 
Background
The Short Form of the McGill Pain Questionnaire (SF-MPQ) is the most widely used assessment of the quality and intensity of pain. In previous validation studies, the factor structure of the SF-MPQ varied widely from various two-factor structures to a five-factor structure, although research on the SF-MPQ quite consistently supports its two-factor structure (i.e., sensory and affective) across different countries and languages. In Korea, the results of exploratory factor analysis of a Korea version of SF-MPQ (KSF-MPQ) showed 2-factor structure consisting of ‘sensory’ and ‘affective’ excluding two items such as splitting and heavy. As an attempt to further validate the KSF-MPQ, the purpose of this study was to confirm whether the KSF-MPQ model is an appropriate model for chronic pain patients in Korea by comparing several alternative models of the SF-MPQ.
Findings
A total of 150 chronic pain patients seeking treatment in Seoul, Korea, participated and completed the KSF-MPQ. Confirmatory factor analysis was conducted to evaluate the adequacy of the KSF-MPQ model and several alternative models. The results indicated that the adjusted KSF-MPQ model showed the best fit to the data among the models in chronic pain patients in Korea.
Conclusions
The results showed the KSF-MPQ is cross-culturally equivalent to the original questionnaire. Thus, the KSF-MPQ is valid measurement for assessing the quality and intensity of pain to chronic pain patients and may be helpful in clinical and research settings in Korea.
doi:10.1186/s12955-014-0195-z
PMCID: PMC4326205
Short-form McGill pain questionnaire; Chronic pain; Korean; Confirmatory factor analysis
5.  Posttraumatic growth, depression and posttraumatic stress in relation to quality of life in tsunami survivors: a longitudinal study 
Background
Quality of life (QoL) may often be reduced in survivors of a natural disaster. This paper investigated how posttraumatic growth (PTG), depression and posttraumatic stress interact and independently predict QoL in a longitudinal study of disaster survivors.
Methods
A total of 58 Norwegian adults who were present in Khao Lak, Thailand at the time of the 2004 Southeast Asia Tsunami completed self-report questionnaires 2 and 6 years after the disaster. The participants reported symptoms of depression and posttraumatic stress as well as PTG and QoL. Multiple mixed effects regression analyses were used to determine the independent effects of PTG, depression and posttraumatic stress on QoL measured 2 and 6 years after the disaster.
Results
Posttraumatic stress and depression were negatively related to QoL. PTG was not significantly related to QoL in a bivariate analysis. However, considerable interaction effects were found. Six years after the tsunami, high levels of posttraumatic stress were related to lower QoL in those participants with low levels of PTG, whereas lower levels of depression were related to higher QoL in those participants with high levels of PTG.
Conclusions
Posttraumatic stress and depression are negatively associated with QoL after a natural disaster. PTG may serve as a moderating factor in this relationship.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-014-0202-4) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-014-0202-4
PMCID: PMC4326430
Natural disaster; Posttraumatic stress; Depression; Posttraumatic growth; Quality of life
6.  Measurement properties of the EQ-5D-5L compared to EQ-5D-3L in the Thai diabetes patients 
Background
The EQ-5D is a health-related quality of life instrument which provides a simple descriptive health profile and a single index value for health status. The latest version, the EQ-5D-5L, has been translated into more than one hundred languages worldwide - including Thai. This study aims to assess the measurement properties of the Thai version of the EQ-5D-5L (the 5L) compared to the EQ-5D-3L (the 3L).
Methods
A total of 117 diabetes patients treated with insulin completed a questionnaire including the 3L and the 5L. The 3L and 5L were compared in terms of distribution, ceiling, convergent validity, discriminative power, test-retest reliability, feasibility, and patient preference. Convergent validity was tested by assessing the relationship between each dimension of the EQ-5D and SF-36v2 using Spearman’s rank-order correlation. Discriminative power was determined by the Shannon index (H ′) and Shannon’s Evenness index (J ′). The test-retest reliability was assessed by examining the intraclass correlation coefficient (ICC) and Cohen’s weighted kappa coefficient.
Results
No inconsistent response was found. The 5L trended towards a slightly lower ceiling compared with the 3L (33% versus 29%). Regarding redistribution, 69% to 100% of the patients answering level 2 with the 3L version redistributed their responses to level 2 with the 5L version while about 9% to 22% redistributed their responses to level 3 with the 5L version. The Shannon index (H ′) improved with the 5L while the Shannon's Evenness index (J ′) reduced slightly. Convergent validity and test-retest reliability was confirmed for both 3L and 5L.
Conclusions
Evidence supported the convergent validity and test-retest reliability of both the 3L and 5L in diabetes patients. However, the 5L is more promising compared to the 3L in terms of a lower ceiling, more discriminatory power, and higher preference by the respondents. Thus, the 5L should be recommended as a preferred health-related quality of life measure in Thailand.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-014-0203-3) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-014-0203-3
PMCID: PMC4328309
Diabetic; EQ-5D-3L; EQ-5D-5L; Health-related quality of life; Measurement properties; Psychometrics
7.  Loss and psychosocial factors as determinants of quality of life in a cohort of earthquake survivors 
Background
Despite the existing evidence of a long lasting effect of disaster related experiences on physical and psychological health, few studies have evaluated long-term quality of life (QOL) outcomes of disaster survivors and the factors associated with such outcomes.
Methods
23 years after the 1988 Spitak earthquake in Armenia, the associations of demographic characteristics, trauma exposure and psychosocial variables on QOL were explored among a cohort of 725 exposed individuals. The EQ-5D-5 L instrument was applied to measure QOL of participants. Multivariate linear and ordinal logistic regressions were applied to evaluate the determinants of QOL and its underlying five domains (mobility, self-care, usual activity, pain/discomfort, and anxiety/depression).
Results
Older age, current depression, post-traumatic stress disorder and anxiety symptoms were negatively associated with QOL. Additionally, those with severe losses (who did not receive any financial/material aid) had significantly poorer QOL outcomes, with higher odds of mobility difficulties (OR = 1.86, p < 0.05), self-care difficulties (OR = 2.85, p < 0.05), and mood problems (OR = 2.69, p < 0.05). However, those with severe earthquake related losses who received financial/material aid reported less self-care difficulties (OR = 0.21, p < 0.05) usual activity difficulties (OR = 0.40, p < 0.05), and mood problems (OR = 0.44, p < 0.05). Finally, each unit increase in current social support score was found to be significantly associated with a better QOL outcome and better self-reported outcomes across all underlying domains of QOL.
Conclusions
These findings suggest that earthquake related loss and concurrent psychopathology symptoms can have adverse impact on the QOL of survivors. They also indicate that well-targeted post-disaster financial/material aid and social support should be considered as means for improving the long-term QOL outcomes of disaster survivors.
doi:10.1186/s12955-015-0209-5
PMCID: PMC4336679
Earthquake; Quality of life; Psychopathology; Material loss; Social support
8.  Preoperative and early postoperative quality of life after major surgery - a prospective observational study 
Background
Changes in health-related quality of life (HRQoL) several days after surgery have rarely been investigated. We aimed to estimate the perioperative change of HRQoL, to identify patients with clinically relevant decrease in postoperative HRQoL and to establish factors associated with this decrease in HRQoL at day 30 after major surgery.
Methods
Patients scheduled for major surgery at a university hospital were enrolled. Based on the HRQoL SF-12 questionnaire, the preoperative physical component summary (PCS) score, preoperative mental component summary (MCS) score, and postoperative PCS and MCS scores at day 30 were recorded. Minimal clinically important difference (MCID) was defined as those with a decrease of at least one half of the standard deviation (SD) of preoperative PCS or MCS scores. Differences between the groups with or without decreased HRQoL were investigated using univariate comparisons. A multiple logistic regression model was performed to evaluate the predictive value of potential perioperative variables.
Results
The mean ± SD preoperative PCS score was 38.5 ± 10.6, postoperative score was 35.1 ± 7.8 (p = .004) in 85 patients. Thirty-five patients (41.2%) had a clinically relevant decrease of the postoperative PCS score. A normal to high preoperative exercise metabolic capacity measured with metabolic equivalent of task (MET) (p = .01) was a predictor of the decrease in postoperative PCS. The mean preoperative MCS scores (p = .395) were 42.2 (SD 12.8) preoperative, and 43.45 (SD 12.4) postoperative, respectively.
Conclusions
Major surgery decreases postoperative PCS scores of HRQoL at 30 days. A normal to high exercise capacity was a predictor of a clinically relevant decrease of postoperative PCS scores.
Trial registration
07–107 (Ethical Committee NAC of Geneva University Hospitals).
doi:10.1186/s12955-014-0194-0
PMCID: PMC4333246  PMID: 25649467
SF-12; Perioperative medicine; Complications; Co-morbidity; Comfort
9.  A web-based psychological support program for caregivers of children with cystic fibrosis: a pilot study 
Background
Parents caring for a child with Cystic Fibrosis (CF) are at high risk for psychological distress and have limited access to psychological care. Therefore, a web-based psychological support program for severely distressed parents of children with CF (WEP-CARE) was developed and evaluated for its feasibility and efficacy.
Methods
A clinical expert panel developed WEP-CARE based on principles of cognitive-behavioral therapy. This web-based writing therapy comprises nine sessions, tailored for the specific needs of caregivers. The pilot study was conducted as a single-group intervention with pre-post-follow-up design. Out of 31 participants, 23 parents completed the intervention (21 female; mean age 37 years; SD = 6.2 years, range 25 – 48 years). Psychological symptoms and quality of life were assessed online by self-report measures at pre- and post-treatment and were followed up three months later.
Results
On average, the caregivers’ symptoms of anxiety decreased statistically significant and clinical relevant about five points from an elevated (M = 11.4; SD =2.6) to a normal level (M = 6.7; SD = 2.6; p < .001) between pre and post treatment. Fear of disease progression (p < .001) and symptoms of depression (p = .02) significantly decreased as well. Quality of life significantly improved (p = .01). The effects were maintained at the 3-months follow-up assessment.
Conclusions
WEP-CARE is feasible and promising regarding its efficacy to improve parental mental health and quality of life.
doi:10.1186/s12955-015-0211-y
PMCID: PMC4336741  PMID: 25652684
Cognitive-behavioral therapy; Cystic fibrosis; Parents; Web-based intervention
10.  Family functioning, marital quality and social support in Chinese patients with epilepsy 
Background
The purpose of this study was to examine family functioning, marital quality, social support, and anxiety and depression in Chinese patients with Epilepsy (PWE) in comparison with healthy people.
Methods
This case–control study included 42 PWE and 42 healthy controls. Participants completed the Zung’s self-rating depression scale, the Zung’s self-rating anxiety scale, the Chinese version of family cohesion and flexibility evaluation scales, the Chinese version of the marital inventory ENRICH, and the Chinese versions of the social support rating scale and perceived social support scale.
Results
PWE reported higher levels of anxiety and depression, and lower levels of family cohesion, marriage quality and social support compared with controls. Support within and outside the family was negatively associated with depression, however social support did not significantly predict depression in PWE. In patients, support within the family and emotional support predicted family cohesion and marriage quality. Instrumental support was negatively associated with anxiety in patients but positively associated with depression in healthy controls. Support within the family predicted family cohesion and marriage quality in both the control group and patient group, depression predicted family adaptation in both the control group and patient group, while support outside the family predicted marriage quality only in the patient group. Both emotional and instrumental support predicted family adaptation in the control group, and emotional support predicted family cohesion in patients.
Conclusions
PWE in China had higher levels of anxiety and depression, dissatisfaction with family functioning and marital life, and less social support compared with healthy controls. Emotional support within and outside families promoted family cohesion and marriage quality, depression decreased family adaptation, and instrumental support decreased anxiety of PWE. These findings suggest that enhancing family and emotional supports and decreasing depression could promote the family functioning and marital quality of PWE, and instrumental support may play a role in decreasing anxiety.
doi:10.1186/s12955-015-0208-6
PMCID: PMC4320606  PMID: 25627321
Family function; Marital quality; Epilepsy; Social support; Depression; Anxiety
11.  A study of suicidal ideation in acute ischemic stroke patients 
Background
Increasing evidences indicate that stroke confers a substantial risk for suicidal ideation. The aim of this study was to identify risk factors of suicidal ideation in acute ischemic stroke patients.
Method
A total of 271 consecutive patients with acute ischemic stroke were recruited in Huai-He hospital or the First People’s Hospital, Kaifeng City, China. Demographic and clinical variables were collected and evaluated. Suicidal ideation was assessed using the Beck Scale for Suicide Ideation (BSI). Multivariate logistic regression was applied to determine the risk factors of suicidal ideation.
Results
Suicidal ideation was identified in 29 patients (10.7%). It was more frequent in patients who lived in rural region, with pre-/post-stroke depression or diabetes, had a higher NIHSS score, had no confidence in disease treatment, or had a poor coping style. Living in rural region (OR 2.59, 95% CI 1.02-6.58), the presence of pre-stroke depression (OR 11.74, 95% CI 4.45-31.01), stroke severity (OR 1.20, 95% CI 1.08-1.33), having no confidence in disease treatment (OR 14.70, 95% CI 2.60-83.15), and post-stroke depression (OR 16.22, 95% CI 6.40-41.10) were independent risk factors of suicidal ideation.
Conclusion
Several factors may be associated with an increased risk of suicidal ideation in acute ischemic stroke patients, including pre-/post-stroke depression, more severe stroke, having no confidence in treatment, as well as living in rural region. Our findings may have implication in risk assessment and intervention for acute ischemic stroke patients in reducing the burdens of suicidal ideation.
doi:10.1186/s12955-014-0198-9
PMCID: PMC4308882  PMID: 25613218
Ischemic stroke; Suicidal ideation; Depression; Risk factor
12.  Do chronic disease patients value generic health states differently from individuals with no chronic disease? A case of a multicultural Asian population 
Background
There is conflicting evidence as to whether patients with chronic disease value hypothetical health states differently from individuals who have not experienced any long-lasting diseases. Furthermore, most studies regarding this issue have been conducted in western countries, with only one conducted in Asia. We aimed to evaluate possible systematic differences in the valuation of EuroQol Group five dimensions 3-level (EQ-5D-3L) health states by chronic disease patients and a population with no chronic disease in Singapore.
Methods
A face-to-face survey for the valuation of the 42 health states of the EQ-5D-3L using the visual analogue scale (VAS) method was conducted in Singapore. The survey also asked participants to report any chronic diseases they had. Ordinary least-square regression models were employed to assess possible differences in the valuation scores of all health states, severe health states and non-severe health states by individual chronic disease patient groups (diabetes, rheumatism, hypertension, heart diseases and lung diseases) and by a group of participants with no chronic disease. A difference of 4 to 8 points on the 100-point VAS was considered to be of practical significance.
Results
The analysis included 332 participants with at least one chronic disease and 651 participants with no chronic disease. After taking health state descriptors and covariates into account, mean valuation scores of the 42 health states by the heart disease group were higher by 4.6 points (p-value = 0.032) compared to the no chronic disease group. Specifically, the heart disease group valued severe health states 5.4 points higher (p-value = 0.025) than the no chronic disease group. There was no practically significant difference in the mean valuation score of non-severe health states between the heart disease group and the no chronic disease group. No practically significant differences were found in the mean valuation score of all health states, severe health states and non-severe health states between any other chronic disease group and the no chronic disease group.
Conclusions
In Singapore, heart disease patients valued EQ-5D-3L severe health states differently from individuals with no chronic disease. Other chronic disease groups did not value EQ-5D-3L health states differently from the no chronic disease group.
doi:10.1186/s12955-014-0200-6
PMCID: PMC4311410  PMID: 25617062
Chronic disease; EQ-5D; Utility; Valuation
13.  Oral and general health-related quality of life in patients treated for oral cancer compared to control group 
Background
Health-related quality of life (HRQoL) is gaining importance as a valuable outcome measure in oral cancer area. The aim of this study was to assess the general and oral HRQoL of oral and oropharyngeal cancer patients 6 or more months after treatment and compare them with a population free from this disease.
Methods
A cross-sectional study was carried out with patients treated for oral cancer at least 6 months post-treatment and a gender and age group matched control group. HRQoL was measured with the 12-Item Short Form Health Survey (SF-12); oral HRQoL (OHRQoL) was evaluated using the Oral Health Impact Profile (OHIP-14) and the Oral Impacts on Daily Performances (OIDP). Multivariable regression models assessed the association between the outcomes (SF-12, OHIP-14 and OIDP) and the exposure (patients versus controls), adjusting for sex, age, social class, functional tooth units and presence of illness.
Results
For patients (n = 142) and controls (n = 142), 64.1% were males. The mean age was 65.2 (standard deviation (sd): 12.9) years in patients and 67.5 (sd: 13.7) years in controls. Patients had worse SF-12 Physical Component Summary scores than controls even in fully the adjusted model [β-coefficient = −0.11 (95% CI: −5.12-(−0.16)]. The differences in SF-12 Mental Component Summary were not statistically significant. Regarding OHRQoL patients had 11.63 (95% CI: 6.77-20.01) higher odds for the OHIP-14 and 21.26 (95% CI: 11.54-39.13) higher odds for OIDP of being in a worse category of OHRQoL compared to controls in the fully adjusted model.
Conclusion
At least 6 months after treatment, oral cancer patients had worse OHRQoL, worse physical HRQoL and similar psychological HRQoL than the general population.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-014-0201-5) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-014-0201-5
PMCID: PMC4311475  PMID: 25613348
Oral cancer; Quality of life; SF-12; OHIP; OIDP
14.  Evaluating the psychometric properties of an e-based version of the 39-item Parkinson’s Disease Questionnaire 
Background
The 39-item Parkinson’s Disease Questionnaire (PDQ-39) is the most thoroughly validated and extensively used self-report measure for the assessment of health-related quality of life in people with Parkinson’s (PwP). Given the extent of its use and increasing emphasis on electronic data capture, an e-based version of the PDQ-39, the ePDQ, has recently been developed. The aim of this short report is to present some key reliability and validity data that confirm the psychometric quality of the ePDQ.
Findings
Participants were emailed a unique link to an online survey incorporating the ePDQ and demographic questions. A total of 118 PwP fully completed the survey. Floor and ceiling effects were calculated to ensure responses were not biased to extreme values. Consequently, score reliability was assessed by item-total correlations with a range from 0.34 to 0.90. Cronbach’s alpha was calculated at between 0.64 and 0.95 for the eight domains of the ePDQ. Construct validity was assessed by comparing domain scores in relation to disease duration and gender, with hypothesised differences being largely confirmed. Construct validity was further assessed following a higher order factor analysis which confirmed the appropriateness of calculating a summary index score. Subsequently, significant, but moderate correlations were calculated between the ePDQ summary index score and disease duration and age at diagnosis.
Conclusions
Results indicate that the ePDQ largely mirrors the properties of its parent instrument, the PDQ-39, in terms of reliability and validity. Potential users can therefore incorporate the ePDQ into computer-based data capture systems with confidence.
doi:10.1186/s12955-014-0193-1
PMCID: PMC4311489  PMID: 25613007
PDQ-39; Parkinson’s disease questionnaire; e-based; ePDQ; Electronic patient reported outcomes; ePROs; Reliability; Validity
15.  Testing mapping algorithms of the cancer-specific EORTC QLQ-C30 onto EQ-5D in malignant mesothelioma 
Background
In order to estimate utilities for cancer studies where the EQ-5D was not used, the EORTC QLQ-C30 can be used to estimate EQ-5D using existing mapping algorithms. Several mapping algorithms exist for this transformation, however, algorithms tend to lose accuracy in patients in poor health states. The aim of this study was to test all existing mapping algorithms of QLQ-C30 onto EQ-5D, in a dataset of patients with malignant pleural mesothelioma, an invariably fatal malignancy where no previous mapping estimation has been published.
Methods
Health related quality of life (HRQoL) data where both the EQ-5D and QLQ-C30 were used simultaneously was obtained from the UK-based prospective observational SWAMP (South West Area Mesothelioma and Pemetrexed) trial. In the original trial 73 patients with pleural mesothelioma were offered palliative chemotherapy and their HRQoL was assessed across five time points. This data was used to test the nine available mapping algorithms found in the literature, comparing predicted against observed EQ-5D values. The ability of algorithms to predict the mean, minimise error and detect clinically significant differences was assessed.
Results
The dataset had a total of 250 observations across 5 timepoints. The linear regression mapping algorithms tested generally performed poorly, over-estimating the predicted compared to observed EQ-5D values, especially when observed EQ-5D was below 0.5. The best performing algorithm used a response mapping method and predicted the mean EQ-5D with accuracy with an average root mean squared error of 0.17 (Standard Deviation; 0.22). This algorithm reliably discriminated between clinically distinct subgroups seen in the primary dataset.
Conclusions
This study tested mapping algorithms in a population with poor health states, where they have been previously shown to perform poorly. Further research into EQ-5D estimation should be directed at response mapping methods given its superior performance in this study.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-014-0196-y) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-014-0196-y
PMCID: PMC4316600  PMID: 25613110
EQ-5D; QLQ-C30; Mapping; Mesothelioma; Health technology assessment; QALY
16.  Type D personality, mental distress, social support and health-related quality of life in coronary artery disease patients with heart failure: a longitudinal observational study 
Background
The relationship between Type D personality and health related quality of life (HRQoL) in coronary artery disease patients is becoming more established, however, the factors that may explain this association remain unclear. The objective of the study was to examine the mediating effects of mental distress and social support on the relationship between the Type D personality and HRQoL in CAD patients with heart failure.
Methods
A total of 855 CAD patients with heart failure were assessed on Type D personality, mental distress, perceived social support and HRQoL with the following self-administered questionnaires: the Type D personality scale - 14, the Hospital Anxiety and Depression scale, the Multidimensional Scale of Perceived Social Support and the Minnesota Living with Heart Failure Questionnaire.
Results
The prevalence of Type D personality within the study population was 33.5%. Type D personality, anxiety symptoms, depressive symptoms and social support were all found to be determinants of decreased HRQoL (p’s < 0.001), once age, gender, NYHA functional class and acute myocardial infarction were adjusted for. Anxiety, depressive symptoms and social support were found to mediate the relationship between Type D personality and HRQoL. Type D personality exerted a stable effect on HRQoL over 24 months follow-up period.
Conclusions
Type D personality has an independent significant effect on the HRQoL in CAD patients with heart failure, and this relation is mediated by anxiety and depressive symptoms, social support.
doi:10.1186/s12955-014-0204-2
PMCID: PMC4311474  PMID: 25608461
Type D personality; Anxiety depression; Social support; Health-related quality of life; Coronary artery disease
17.  Strategies to use tablet computers for collection of electronic patient-reported outcomes 
Background
Mobile devices are increasingly being used for data collection in research. However, many researchers do not have experience in collecting data electronically. Hence, the purpose of this short report was to identify issues that emerged in a study that incorporated electronic capture of patient-reported outcomes in clinical settings, and strategies used to address the issues.
Findings
The issues pertaining to electronic patient-reported outcome data collection were captured qualitatively during a study on use of electronic patient-reported outcomes in two home dialysis units. Fifty-six patients completed three surveys on tablet computers, including the Kidney Disease Quality of Life-36, the Edmonton Symptom Assessment Scale, and a satisfaction measure. Issues that arose throughout the research process were recorded during ethics reviews, implementation process, and data collection. Four core issues emerged including logistics of technology, security, institutional and financial support, and electronic design.
Conclusions
Although use of mobile devices for data collection has many benefits, it also poses new challenges for researchers. Advance consideration of possible issues that emerge in the process, and strategies that can help address these issues, may prevent disruption and enhance validity of findings.
doi:10.1186/s12955-014-0205-1
PMCID: PMC4311482  PMID: 25608560
Electronic patient-reported outcomes; ePRO; Tablet computers; iPad; Nursing
18.  Analysis of vestibular-balance symptoms according to symptom duration: dimensionality of the Vertigo Symptom Scale-short form 
Background
Dizziness or vertigo is associated with both vestibular-balance and psychological factors. A common assessment tool is the Vertigo Symptom Scale (VSS) -short form, which has two subscales: vestibular-balance and autonomic-anxiety. Despite frequent use, the factor structure of the VSS-short form has yet to be confirmed. Here, we clarified the factor structure of the VSS-short form, and assessed the validity and reliability of the Japanese version of this tool.
Methods
We conducted a cross-sectional, multicenter, psychometric evaluation of patients with non-central dizziness or vertigo persisting for longer than 1 month. Participants completed the VSS-short form, the Dizziness Handicap Inventory, and the Hospital Anxiety and Depression Scale. They also completed the VSS-short form a second time 1–3 days later. The questionnaire was translated into Japanese and cross-culturally adapted. We conducted a confirmatory factor analysis followed by an exploratory factor analysis. Convergent and discriminant validity, internal consistency, and test-retest reliability were evaluated.
Results
The total sample and retest sample consisted of 159 and 79 participants, respectively. Model-fitting for a two-subscale structure in a confirmatory factor analysis was poor. An exploratory factor analysis produced a three-factor structure: long-duration vestibular-balance symptoms, short-duration vestibular-balance symptoms, and autonomic-anxiety symptoms. Regarding convergent and discriminant validity, all hypotheses were clearly supported. We obtained high Cronbach’s α coefficients for the total score and subscales, ranging from 0.758 to 0.866. Total score and subscale interclass correlation coefficients for test-retest reliability were acceptable, ranging from 0.867 to 0.897.
Conclusions
The VSS-short form has a three-factor structure that was cross-culturally well-matched with previous data from the VSS-long version. Thus, it was suggested that vestibular-balance symptoms can be analyzed separately according to symptom duration, which may reflect pathophysiological factors. The VSS-short form can be used to evaluate vestibular-balance symptoms and autonomic-anxiety symptoms, as well as the duration of vestibular-balance symptoms. Further research using the VSS-short form should be required in other languages and populations.
doi:10.1186/s12955-015-0207-7
PMCID: PMC4311503  PMID: 25608680
Vestibular disease; Psychosomatic medicine; Vertigo; Dizziness; Anxiety; Factor analysis; Validity; Reliability; Japanese
19.  Sexual dysfunction and sexual quality of life among the physically challenged in the Kumasi metropolis, Ghana 
Background
Despite the fact that the physically disabled have difficulties in many aspects of their lives, including sexuality, society often ignores these needs or assume that they have no such needs. This cross-sectional study therefore seeks to determine the prevalence of sexual dysfunction (SD) and its impact on the quality of life among persons with physical disability residing in the Kumasi metropolis, Ghana.
Method
This study was conducted among 235 persons with physical disability dwelling in communities within the Kumasi metropolis, Ghana between September 2011 and April 2012. All participants were evaluated by using a semi-structured questionnaire, the Golombok Rust Inventory of Sexual Satisfaction (GRISS) questionnaire and the Sexual Quality of Life questionnaire (SQoL). Self-designed semi-structured questionnaire was also administered to each consented study participant for socio-demographic information.
Results
The response rates were 72% and 63.6% for male and female respectively. The age range of the male was 19–74 years with 61.1% being married whilst the age range of the female was 20–66 years with 54.3% being married. 30% and 7.1% of the male and female respectively consumed alcohol beverage. The mean Sexual quality of life (SQoL) score was slightly higher in the females (57.7 ± 15.8), ranging from 25.6 to 97.8. Univariate analysis of the male data showed that the only significant factor that tends to increase the male SD was alcohol (OR: 24.6; CI: 1.4 - 14.9; p = 0.0071). The prevalence of SD was higher among the female populace (65.7%) compared to the 64.4% for the male populace though very closely comparable. Except for non-communication (NC) and anorgasmia (impotence in males), all other areas of difficulty had higher percentages in males than females.
Conclusion
The prevalence of sexual dysfunction among the physically challenged is comparable to prevalence rates in the able male and female population. This could impact significantly on their self-esteem and quality of life via avoidance, impotence and vaginismus thereby causing emotional distress leading to relationship problems. Alcohol increases the risk of developing SD by five-fold in physically challenged men.
doi:10.1186/s12955-015-0206-8
PMCID: PMC4311510  PMID: 25608611
20.  Comparison of three longitudinal analysis models for the health-related quality of life in oncology: a simulation study 
Background
Health-Related Quality of Life (HRQoL) is an important endpoint in oncology clinical trials aiming to investigate the clinical benefit of new therapeutic strategies for the patient. However, the longitudinal analysis of HRQoL remains complex and unstandardized. There is clearly a need to propose accessible statistical methods and meaningful results for clinicians. The objective of this study was to compare three strategies for longitudinal analyses of HRQoL data in oncology clinical trials through a simulation study.
Methods
The methods proposed were: the score and mixed model (SM); a survival analysis approach based on the time to HRQoL score deterioration (TTD); and the longitudinal partial credit model (LPCM). Simulations compared the methods in terms of type I error and statistical power of the test of an interaction effect between treatment arm and time. Several simulation scenarios were explored based on the EORTC HRQoL questionnaires and varying the number of patients (100, 200 or 300), items (1, 2 or 4) and response categories per item (4 or 7). Five or 10 measurement times were considered, with correlations ranging from low to high between each measure. The impact of informative missing data on these methods was also studied to reflect the reality of most clinical trials.
Results
With complete data, the type I error rate was close to the expected value (5%) for all methods, while the SM method was the most powerful method, followed by LPCM. The power of TTD is low for single-item dimensions, because only four possible values exist for the score. When the number of items increases, the power of the SM approach remained stable, those of the TTD method increases while the power of LPCM remained stable. With 10 measurement times, the LPCM was less efficient. With informative missing data, the statistical power of SM and TTD tended to decrease, while that of LPCM tended to increase.
Conclusions
To conclude, the SM model was the most powerful model, irrespective of the scenario considered, and the presence or not of missing data. The TTD method should be avoided for single-item dimensions of the EORTC questionnaire. While the LPCM model was more adapted to this kind of data, it was less efficient than the SM model. These results warrant validation through comparisons on real data.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-014-0192-2) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-014-0192-2
PMCID: PMC4326524  PMID: 25551580
Longitudinal analysis; Statistical methods; Health-related quality of life; Oncology clinical trials
21.  Psychometric properties and factor structure of the 13-item satisfaction with daily occupations scale when used with people with mental health problems 
Background
In mental health care practice and research it is increasingly recognized that clients’ subjective perceptions of everyday occupations, such as satisfaction, are important in recovery from mental illness. Instruments thus need to be developed to assess satisfaction with everyday occupations. The aim of the present study was to assess psychometric properties of the 13-item Satisfaction with Daily Occupation (SDO-13) when used with people with mental health problems, including its internal consistency, factor structure, construct validity and whether the scale produced ceiling or floor effects. An additional question concerned if the factor structure varied whether the participants were, or were not, presently engaged in the activity they rated.
Methods
The interview-based SDO-13 includes items pertaining to work/studies, leisure, home maintenance, and self-care occupations. Whether the person currently performs an occupation or not, he/she is asked to indicate his/her satisfaction with that occupation. The SDO-13 was completed with 184 persons with mental illness. Residual variables were created to remove the variation linked with currently performing the targeted occupation or not and to assess the factor structure of the SDO-13. The indicators of general satisfaction with daily occupations, self-esteem and global functioning were used to assess construct validity. The statistical methods included tests of homogeneity, confirmatory factor analysis and Pearson correlations.
Results
The internal consistency was satisfactory at 0.79. A three-factor solution indicated that the construct behind the SDO-13 was composed of three facets; Taking care of oneself and the home, Work and studies, and Leisure and relaxation. The same factor structure was valid for both original scores and the residuals. An expected pattern of correlations with the indicators was mainly found, suggesting basic construct validity. No ceiling or floor effects were found.
Conclusions
Taken together, the findings suggest the SDO-13 is a reliable and robust instrument that may be used to get an overview of the satisfaction people living with mental illness derive from their daily occupations.
doi:10.1186/s12955-014-0191-3
PMCID: PMC4302612  PMID: 25539859
Factor analysis; CFA; Homogeneity; Psychiatry; Occupational therapy
22.  Development and psychometric validation of the Chinese version of Skindex-29 and Skindex-16 
Background
Dermatological disease significantly affects patient’s health-related quality of life (HrQoL). Skindex is one of the most frequently used dermatology-specific HrQoL measures. Currently no Chinese version of Skindex is available. The aim of this study was to translate and culturally adapt Skindex-29 and Skindex-16 into Chinese, and to evaluate their reliability and validity.
Methods
Translation and cultural adaption were performed following guidelines for cross-cultural adaption of health-related quality of life measures. Subsequently, a cross-sectional study was conducted in which patients with dermatological disease (n = 225) were enrolled. The Chinese version of Skindex-29 and Skindex-16 and Dermatology Life Quality Index (DLQI) were completed. Reliability was evaluated with internal consistency using Cronbach’s alpha. Validity was evaluated using known-groups validity, convergent validity and factor structure validity.
Results
There were both seven items of Skindex-29 and Skindex-16 requiring a second forward- and backward- translation to achieve the final satisfactory Chinese version. The internal consistency reliability was high (range of Cronbach’s alpha for the scales of Skindex-29 0.85-0.97, Skindex-16 0.86-0.96). Known-group validity was demonstrated by higher scores from patients with inflammatory dermatosis than from patients with isolated skin lesions (P < 0.05). Evidence of factor structure validity of the Skindex-29 and Skindex-16 was demonstrated by both exploratory factor analysis that accounted for 68.66% and 77.78% of the total variance, respectively, and confirmatory factor analysis with acceptable fitness into the expected three-factor structure.
Conclusion
This study has developed semantically equivalent translations of Skindex-29 and Skindex-16 into Chinese. The evaluation of the instruments’ psychometric properties shows they have substantial evidence of reliability and validity for use as HrQoL instruments in Chinese patients with dermatological disease.
doi:10.1186/s12955-014-0190-4
PMCID: PMC4305222  PMID: 25539748
Health-related quality of life; Skindex; Chinese; Validation
23.  Evaluation of a skin self examination attitude scale using an item response theory model approach 
Introduction
The Skin Self-Examination Attitude Scale (SSEAS) is a brief measure that allows for the assessment of attitudes in relation to skin self-examination. This study evaluated the psychometric properties of the SSEAS using Item Response Theory (IRT) methods in a large sample of men ≥ 50 years in Queensland, Australia.
Methods
A sample of 831 men (420 intervention and 411 control) completed a telephone assessment at the 13-month follow-up of a randomized-controlled trial of a video-based intervention to improve skin self-examination (SSE) behaviour. Descriptive statistics (mean, standard deviation, item–total correlations, and Cronbach’s alpha) were compiled and difficulty parameters were computed with Winsteps using the polytomous Rasch Rating Scale Model (RRSM). An item person (Wright) map of the SSEAS was examined for content coverage and item targeting.
Results
The SSEAS have good psychometric properties including good internal consistency (Cronbach’s alpha = 0.80), fit with the model and no evidence for differential item functioning (DIF) due to experimental trial grouping was detected.
Conclusions
The present study confirms the SSEA scale as a brief, useful and reliable tool for assessing attitudes towards skin self-examination in a population of men 50 years or older in Queensland, Australia. The 8-item scale shows unidimensionality, allowing levels of SSE attitude, and the item difficulties, to be ranked on a single continuous scale. In terms of clinical practice, it is very important to assess skin cancer self-examination attitude to identify people who may need a more extensive intervention to allow early detection of skin cancer.
doi:10.1186/s12955-014-0189-x
PMCID: PMC4305258  PMID: 25539671
Skin cancer; Skin self-examination; Attitude scale; Item response theory; Rating scale; Rasch model
24.  Longitudinal observation, evaluation and interpretation of coping with mental (emotional) health in low vision rehabilitation using the Dutch ICF Activity Inventory 
Background
Since there is evidence that mental health aspects (such as depression) may inhibit an optimal rehabilitation outcome, there is growing interest in the psychosocial aspects of vision loss as part of rehabilitation. The purpose of this study is to provide more insight into the construct validity and (longitudinal) interpretation of goals related to ‘Coping with mental (emotional) health aspects’ which are part of the recently developed ‘Dutch ICF Activity Inventory (D-AI). Moreover, the data allowed to provide some insight in the outcome in this domain in relation to rehabilitation programs followed in Dutch Multidisciplinary Rehabilitation Centers at baseline and follow-up.
Methods
In a cohort of 241 visually impaired persons, the D-AI was assessed at baseline (enrollment), 4 and 12 months, The importance and difficulty of the D-AI goals ‘Handle feelings’, ‘Acceptance’, and ‘Feeling fit’ and difficulty scores of underlying tasks were further analyzed, together with similar or related standardized questionnaires. At baseline, Spearman correlations were determined between D-AI goals and task and additional questionnaires to investigate the construct validity. Corrected and uncorrected linear mixed models were used to determine longitudinal rehabilitation outcomes in relation to rehabilitation programs followed.
Results
Baseline correlations indicated that the difficulty of tasks and the umbrella goal ‘Acceptance’ were not similar. Longitudinal analyses provided insight in some subtle differences in concepts measured at the goal and task level of the D-AI, as well as similar validated questionnaires. After correcting for confounding variables, none of the underlying task difficulty scales changed over time. For goal difficulty scores only ‘Acceptance’ was reported to be significantly less difficult at 4 and 12 months follow-up. Importance scores of goals were stable from baseline to follow-up.
Conclusion
With respect to the constructs measured, results support the formulation of the new goal question ‘Emotional life’ which replaces the goals ‘Handle feelings’ and ‘Acceptance’. Results indicate that MRCs should pay more attention to problems related to mental health. They have started to use the D-AI as it seems a promising tool to investigate and evaluate rehabilitation needs (including those related to mental health) over time and to clearly define rehabilitation goals from the very start.
doi:10.1186/s12955-014-0182-4
PMCID: PMC4308065  PMID: 25539603
Low vision; Rehabilitation; D-AI; ICF; Activities and participation; Patient-centered; Mental health; Acceptance; Fatigue; Handle feelings
25.  Social support: an important factor for quality of life in women with hirsutism 
Background
Women with hirsutism have reported imparied health and health-related quality of life (HRQoL). Social support is a factor that might increase HRQoL in chronic diseases, but little is known about this association among women with hirsutism.
Aim
The aim of the study was to describe social support and explore its association with HRQoL among women with hirsutism. A further aim was to compare HRQoL in women with hirsutism with a Swedish normal population.
Methods
A questionnaire including socio-demographic questions, Short-Form Health Survey (SF-36), the Multidimensional Scale of Perceived Social Support (MSPSS), and a self-estimation of hairiness using the Ferriman-Gallway scale (F-G scale) was answered by 127 women with hirsutism.
Results
Multiple regression analyses showed significant associations between social support and all health dimensions in the SF-36, also after the model was adjusted for age, hairiness and body mass index. Compared to the normal Swedish population, women with hirsutism reported significantly lower HRQoL in all dimensions of the SF-36 (p < 0.01).
Conclusions
There is a significant positive association between social support and HRQoL, demonstrating its importance for the ability to adapt to problems associated with hirsutism. As women with hirsutism reported poorer HRQoL compared to the normal population, social support may be a factor to consider in clinical practice.
doi:10.1186/s12955-014-0183-3
PMCID: PMC4297415  PMID: 25526751
Association; Health; Hirsutism; Quality of life; Social support

Results 1-25 (1464)