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1.  Predictors of health-related quality of life in patients with irritable bowel syndrome. A cross-sectional study in Norway 
Background
Reduced quality of life (QoL) is often the main problem for patients with irritable bowel syndrome (IBS). This study aimed at finding predictors of reduced physical and mental quality of life (QoL) accessible for intervention.
Methods
Consecutive patients with IBS (according to the Rome II criteria) visiting a general practitioner were included in a prospective cohort study and followed up for 6−9 months. At the last visit, information about sociodemographic characteristics, abdominal complaints, QoL and a range of physical and mental comorbidities were collected. Physical and mental QoL were measured with the generic QoL instrument Short Form-12 Physical Component Score (SF-12 PCS) and Short Form-12 Mental Component Score (SF-12 MCS) respectively. The normal scores are 50. This cross-sectional study used data from the last visit.
Results
Out of 208 patients included in the cohort study, 149 (female/male: 105/44) with a mean age of 52 years (SD 15.3) were available for the analyses. Physical and mental QoL were reduced, the mean SF-12 PCS and SF-12 MCS scores were 38.4 (SD 11.9) and 45.0 (SD 11.3) respectively. The main independent predictors of low SF-12 PCS and SF-12 MCS were subjective health complaints and organic diseases, and affective disorders respectively. The severity of IBS symptoms was of minor clinical importance.
Conclusions
To help patients with IBS and reduced QoL, treatment should focus on QoL and not on relief of IBS symptoms. The different causes of reduced physical and mental QoL make an individually directed treatment necessary.
doi:10.1186/s12955-015-0311-8
PMCID: PMC4518561
Comorbidity; Irritable bowel syndrome; Quality of life; Therapy
2.  Development of ATAQ-LAM: a tool to assess quality of life in Lymphangioleiomyomatosis 
Background
Lymphangioleiomyomatosis (LAM) is a progressive lung disease that impairs health-related quality of life (HRQL).
Objective
To develop and conduct initial testing of ATAQ-LAM (A Tool to Assess Quality of Life in LAM).
Methods
A pilot version of the questionnaire was administered to respondents with LAM. We used a deletion algorithm to retain items and then applied multi-trait scaling to place retained items into appropriate domains, thus generating the ATAQ-LAM. Rasch analysis was used to assess item fit to a unidimensional model of HRQL. We determined internal consistency (IC) and floor and ceiling effects of ATAQ-LAM scores and conducted analyses aimed at supporting the validity of ATAQ-LAM.
Results
Sixty-nine LAM patients provided response data. Thirty-two items survived the deletion algorithm. Scaling suggested ATAQ-LAM should have a four-domain structure (Exertional dyspnea, IC = 0.94; Cough, IC = 0.91; Fatigue, IC = 0.91; Emotional Well-Being, IC = 0.89). All items fit the Rasch model. Among 17 respondents with spirometry within three months of questionnaire completion, three of five ATAQ-LAM scores correlated with FEV1% (Exertional Dyspnea: r = −0.72, p = 0.001; Fatigue: r = −0.62, p = 0.007 and total: r = −0.53, p = 0.02). Compared with those in the highest tertile of FEV1%, subjects in the lowest tertile had greater ATAQ-LAM total (121.8 ± 14.3 vs. 79.8 ± 13.1, p = 0.04), Exertional Dyspnea (54.4 ± 6.3 vs. 25.5 ± 5.8, p = 0.005) and Fatigue (2.8 ± 2.4 vs. 14.8 ± 2.3, p = 0.03) scores, indicating greater impairment in HRQL.
Conclusions
ATAQ-LAM is a disease-specific instrument designed to assess HRQL in LAM patients. Additional studies are needed to generate data in support of its validity as an instrument capable of assessing HRQL over time in LAM patients.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-015-0294-5) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-015-0294-5
PMCID: PMC4518581  PMID: 26220448
3.  Validation of the French translation-adaptation of the impact of cancer questionnaire version 2 (IOCv2) in a breast cancer survivor population 
Background
The Impact of Cancer version 2 (IOCv2) was designed to assess the physical and psychosocial health experience of cancer survivors through its positive and negative impacts. Although the IOCv2 is available in English and Dutch, it has not yet been validated for use in French-speaking populations. The current study was undertaken to provide a comprehensive assessment of the reliability and validity of the French language version of the IOCv2 in a sample of breast cancer survivors.
Methods
An adapted French version of the IOCv2 as well as demographic and medical information were completed by 243 women to validate the factor structure divergent/divergent validities and reliability. Concurrent validity was assessed by correlating the IOCv2 scales with measures from the SF-12, PostTraumatic Growth Inventory and Fear of Cancer Recurrence Inventory.
Results
The French version of the IOCv2 supports the structure of the original version, with four positive impact dimensions and four negative impact dimensions. This result was suggested by the good fit of the confirmatory factor analysis and the adequate reliability revealed by Cronbach's alpha coefficients and other psychometric indices. The concurrent validity analysis revealed patterns of association between IOCv2 scale scores and other measures.
Unlike the original version, a structure with a Positive Impact domain consisting in the IOCv2 positive dimensions and a Negative Impact domain consisting in the negative ones has not been clearly evidenced in this study. The limited practical use of the conditional dimensions Employment Concerns and Relationship Concerns, whether the patient is partnered or not, did not make possible to provide evidence of validity and reliability of these dimensions as the subsets of sample to work with were not large enough. The scores of these conditional dimensions have to be used with full knowledge of the facts of this limitation of the study.
Conclusions
Integrating IOCv2 into studies will contribute to evaluate the psychosocial health experience of the growing population of cancer survivors, enabling better understanding of the multi-dimensional impact of cancer.
doi:10.1186/s12955-015-0301-x
PMCID: PMC4517314  PMID: 26220672
Cancer survivor; Survivorship; Breast cancer; Questionnaire; Psychometric properties; Psychosocial
4.  Health and wellbeing in informal caregivers and non-caregivers: a comparative cross-sectional study of the Swedish a general population 
Background
Informal caregiving by relatives is a great resource for individuals as well as for society, but the caregiving role is associated with health problems for the caregiver. This study aimed to compare caregivers’ self-rated health, number of recent days with poor health and psychological wellbeing with that of non-caregivers in a general Swedish population.
Methods
From 2004 to 2013, 90,845 Swedish people completed a postal questionnaire about their health, number of recent days with poor health during last month, psychological wellbeing and if they were performing caregiving or not. Descriptive statistics, chi-square analysis, ANOVA, logistic regressions and negative binomial regression models were used to investigate associations between being a caregiver or not and health and wellbeing. Negative binomial regression was used to assess the relation between caregiver status and recent days with poor health or functioning.
Results
Eleven percent reported having a caregiving role. Caregivers reported poorer self-rated health compered to non-caregivers, also in adjusted models; odds ratio (OR): 1.07 with a 95 % confidence interval (CI): 1.01-1.13. Caregivers also reported lower psychological wellbeing compared to non-caregivers; OR: 1.22, CI: 1.15-1.30. Caregiving status was associated with more recent days with poor physical health and more recent days with poor mental health.
Conclusions
This study suggests that caregivers have worse perceptions in self-rated health and psychological wellbeing compared with non-caregivers, indicating that the role of caregiver is adversely associated with health. This association also appears in terms of reporting days of poor health in the last month. The underlying mechanism of these associations, including the potential detrimental health effects of being a caregiver, needs to be investigated in longitudinal studies.
doi:10.1186/s12955-015-0309-2
PMCID: PMC4517403  PMID: 26216099
Self-rated health; Wellbeing; Informal caregiving; Population health
5.  Patterns of health-related quality of life and associated factors in Chinese patients undergoing haemodialysis 
Background
Haemodialysis (HD) is a life-saving but burdensome therapy for patients with end-stage renal disease (ESRD) which can have a detrimental impact on patients’ quality of life and outcomes. There is currently little data on the health related quality of life (HRQOL) of Chinese ESRD patients undergoing HD and this study sought to examine the patterns of HRQOL and its associated factors within this population, as well as in comparison with the general local population.
Methods
A cross-sectional study of 244 ESRD patients receiving HD in the hospital and in the community in Hong Kong was conducted using the Short Form-12 Health Survey version 2 (SF-12v2). All study subjects were one-to-one matched with subjects in a Hong Kong general population database by sex and exact age. Independent t-tests were performed to compare the mean SF-12v2 scores between HD patients and the general population, followed by one-way analysis of variance with post hoc Tukey’s HSD tests to compare community-based haemodialysis, hospital-based haemodialysis and the general population. Multiple linear regressions were used to identify the factors (socio-demographic, clinical characteristics and comorbidities) associated with the HRQOL scores of ESRD patients receiving HD.
Results
The SF-12v2 Physical Functioning, Role Physical, Bodily Pain, General Health and Physical Component Summary scores of HD patients were significantly lower than the age-sex adjusted general population. However, the SF-12v2 Mental Health and Mental Component Summary scores of HD patients were significantly higher than the corresponding general population. Poorer HRQOL was associated with being female, smoking, unemployment and hospital-based haemodialysis.
Conclusions
HD patients had substantially poorer physical HRQOL but better mental HRQOL than the age-sex adjusted general population. Patients receiving HD in the community setting had better HRQOL. Reasons for these observations will need to be further investigated. Those patients who are female, smokers and unemployed may warrant more attention as their poorer HRQOL may be associated with poorer outcomes.
doi:10.1186/s12955-015-0308-3
PMCID: PMC4517648  PMID: 26215978
Haemodialysis; Health related quality of life; SF-12v2; End stage renal disease; Chinese; Hong Kong
6.  Health related quality of life in patients with actinic keratosis – an observational study of patients treated in dermatology specialist care in Denmark 
Background
Actinic keratosis (AK) is a common skin condition that may progress to non-melanoma skin cancer (NMSC). The disease may influence Health Related Quality of Life (HRQoL), but studies of HRQoL in patients with AK are limited.
The purpose of the study was to analyze HRQoL in patients with different severity levels of AK treated in dermatology specialist care using generic and disease-specific HRQoL instruments and to analyze their relationship.
Methods
AK patients who visited dermatological clinics in Denmark were included in an observational, cross-sectional, study in a multi-center setting. Dermatologists assessed AK severity and patients completed: Actinic Keratosis Quality of Life Questionnaire (AKQoL), Dermatology Life Quality Index (DLQI), and EQ-5D-5 L including EQ-VAS. Differences between categorical subgroups were tested with Wilcoxon rank-sum test. The relationship between instruments was analyzed with the Spearman correlation test.
Results
A total of 312 patients were included in the analyses. Patients reported impairment in the disease specific HRQoL instrument AKQoL (mean AKQoL 6.7, DLQI 2, EQ-5D-5 L 0.88, and EQ-VAS 79). HRQoL was least affected in patients with mild actinic disease, whereas patients with severe actinic damage suffered from further impaired HRQoL (mean AKQoL 10.1 and DLQI 4.6). Correlations between DLQI and AKQoL were moderate, whereas the correlations between DLQI and EQ-5D-5 L and between AKQoL and EQ-5D-5 L were weak.
Conclusions
Patients with severe actinic damage showed more impairment in HRQoL than those with mild disease. Correlations between instruments suggest that they are complementary as they measure different aspects of HRQoL and are used for different purposes.
doi:10.1186/s12955-015-0295-4
PMCID: PMC4518856  PMID: 26220553
Actinic keratosis; Health related quality of life; EQ-5D; DLQI; AKQoL
7.  Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer 
Background
Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end–points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13–24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention.
Methods
A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14–25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14–24 years.
Result
Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people’s cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments.
Conclusion
Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive.
doi:10.1186/s12955-015-0312-7
PMCID: PMC4517652  PMID: 26216214
Teenager; Young adult; Cancer; Experience; BRIGHTLIGHT
8.  Self- and proxy reports of quality of life among adolescents living in residential youth care compared to adolescents in the general population and mental health services 
Background
Child welfare services are aimed at providing care and protection, fostering well-being and prosocial behaviour. Thus, Quality of Life (QoL) should be an important outcome measure in Residential Youth Care (RYC) institutions. However, the dearth of research in this area gives rise to serious concern. The present study is the first large scale, nationwide study assessing QoL among adolescents living in RYC. To provide a reference frame, adolescent self- and primary contact proxy reports were compared to the general population and to adolescent outpatients in Child and Adolescent Mental Health Service (CAMHS). Also, we investigated the association between self-report of QoL in adolescents living in RYC and proxy reports of their primary contacts at the institution.
Methods
All residents between the ages of 12–23 years living in RYC in Norway were the inclusion criteria. Eighty-six RYC institutions (with 601 eligible youths) were included, 201 youths/ parents did not give their consent. Finally, 400 youths aged 12–20 years participated, yielding a response rate of 67 %. As a reference frame for comparison, a general population (N = 1444) and an outpatient sample of adolescents in CAMHS (N = 68) were available. We used the Questionnaire for Measuring Health-related Quality of Life in Children and Adolescents (KINDL-R). General Linear Model analyses (ANCOVA) were conducted with five KINDL life domains as dependent variables and group as independent variable.
Results
Self- and proxy reports of QoL in adolescents living in RYC revealed a significantly (p < 0.001) poorer QoL compared to the general population on the life domains Physical- and Emotional well-being, Self-esteem, and relationship with Friends. Adolescents evaluated their physical well-being as worse compared to adolescents in CAHMS. Self- and proxy reports in RYC differed significantly on two of five life domains, but correlated low to moderate with each other.
Conclusions
The results in this study raise major concerns about the poor QoL of the adolescents living in RYC, thereby challenging the child welfare system and decision makers to take action to improve the QoL of this group. The use of QoL as outcome measures is highly recommended.
doi:10.1186/s12955-015-0280-y
PMCID: PMC4509467  PMID: 26197764
Child welfare service; Residential youth care; Adolescents; KINDL-R; Quality of life
9.  Assessing children’s interpretations of the Aboriginal Children’s Health and Well-Being Measure (ACHWM) 
Background
There are emerging opportunities to improve the health of Aboriginal children and youth. The Aboriginal Children’s Health and Well-being Measure (ACHWM) was developed to enable Aboriginal communities to obtain group-level data from the perspectives of their children 8 to 18 years of age. The survey was developed in collaboration with children, based on the Medicine Wheel framework. The purpose of this study was to ensure that children and youth interpreted the ACHWM questions consistently and accurately and to establish the face validity of the survey.
Methods
Children and parents/caregivers from the Wikwemikong Unceded Indian Reserve (Canada) participated in a detailed interview process as they completed the ACHWM, in 2012. Each participant worked through their thought process verbally, to enable the interviewer to identify questions that were misinterpreted or inconsistently interpreted. Questions were revised based on feedback from the participants, and reviewed with new participants until a stable version was established. The resulting version was reviewed by health care providers and community members to further ensure cultural relevance and face validity within the community.
Results
A total of 18 interviews, with 9 children and 9 caregivers, were required to achieve a stable version of the survey. The children ranged in age from 8 to 18 years. Revisions were required for 19 questions. Most of these revisions were minor linguistic changes. In addition, 6 questions were deleted due to consistent problems and 4 questions were created to address gaps identified during the process. Community members confirmed the appropriateness of the measure for their community and communicated their pride in their youth’s role in the development of this survey.
Conclusions
The result was a 58-question version of the ACHWM that was consistently interpreted and culturally appropriate, and had face validity confirmed by experts from the community, children and their parents/caregivers. The ACHWM is ready to be assessed for relevance to other Aboriginal communities.
doi:10.1186/s12955-015-0296-3
PMCID: PMC4511023  PMID: 26197841
Aboriginal; Children; Well-being; Interviews; Questionnaire; Child Self-Report
10.  Cross-cultural measurement equivalence of the 5-level EQ-5D (EQ-5D-5L) in patients with type 2 diabetes mellitus in Singapore 
Background
This study aimed to assess the measurement equivalence of the 5-level EQ-5D (EQ-5D-5L) among the English, Chinese, and Malay versions.
Methods
A convenience sample of patients with type 2 diabetes mellitus were enrolled from a public primary health care institution in Singapore. The survey questionnaire comprised the EQ-5D-5L and questions assessing participants’ socio-demographic and clinical characteristics. Multiple linear regression models were used to assess the difference in EQ-5D-5L index (calculated using an interim algorithm) and EQ-visual analog scale (EQ-VAS) scores across survey language (Chinese vs. English, Malay vs. English, and Malay vs. Chinese). Measurement equivalence was examined by comparing the 90 % confidence interval of difference in the EQ-5D-5L index and EQ-VAS scores with a pre-determined equivalence margin. Multiple logistic regression models were used to assess the response patterns of the 5 Likert-type items of the EQ-5D-5L across survey language.
Results
Equivalence was demonstrated between the Chinese and English versions and between the Malay and English versions of the EQ-5D-5L index scores. Equivalence was also demonstrated between the Chinese and English versions and between the Malay and Chinese versions of the EQ-VAS scores. Equivalence could not be determined between the Malay and Chinese versions of the EQ-5D-5L index score and between the Malay and English versions of the EQ-VAS score. No significant difference was found in responses to EQ-5D-5L items between any languages, except that patients who chose to complete the Chinese version were more likely to report “no problems” in mobility compared to those who completed the Malay version of the questionnaire.
Conclusions
This study provided evidence for the measurement equivalence of the different language versions of EQ-5D-5L in Singapore.
doi:10.1186/s12955-015-0297-2
PMCID: PMC4502594  PMID: 26179285
Cross-cultural measurement equivalence; Diabetes mellitus; EQ-5D-5L; Singapore
11.  The impact of oral health on the quality of life of nursing home residents 
Background
Good oral health in older residents of nursing homes is important for general health and quality of life. Very few studies have assessed how oral symptoms affect residents’ quality of life.
Objective
To assess the clinical and subjective oral health, including oral health related quality of life (OHRQoL), and the association of oral symptoms with OHRQoL in older people residing in nursing homes in Islington, London.
Method
Overall, 325 residents from nine nursing homes were clinically examined and 180 residents were interviewed to assess their oral symptoms and their OHRQoL using the OIDP measure. Managers and carers working in the homes were also interviewed.
Results
Almost two thirds of the sample were dentate (64.5 %). 61.3 % of dentate and 50.9 % of edentate residents reported problems such as dry mouth, sore cracked lips, broken teeth and toothache and ill-fitting dentures. Oral health impacted considerably upon resident’s OHRQoL; 20.2 % of dentate and 30.9 % of edentate reported at least one oral impact in the past 6 months. Sensitive teeth, toothache, bleeding gums, dry mouth and loose natural teeth among the dentate and loose or ill-fitting dentures among the edentate were strongly associated with higher prevalence of oral impacts even after adjusting for demographic and socio-economic factors, and for the number of teeth (dentate only).
Conclusion
The burden of oral conditions was considerable. Oral symptoms were very common and were strongly associated with residents’ worse OHRQoL. Health promotion programmes are important to help residents maintain an acceptable level of oral health and function.
doi:10.1186/s12955-015-0300-y
PMCID: PMC4501060  PMID: 26169066
Older people; Oral health; Nursing home; Oral health related quality of life
12.  Mobility predicts change in older adults’ health-related quality of life: evidence from a Vancouver falls prevention prospective cohort study 
Background
Older adults with mobility impairments are prone to reduced health related quality of life (HRQoL) is highly associated with mobility impairments. The consequences of falls have detrimental impact on mobility. Hence, ascertaining factors explaining variation among individuals’ quality of life is critical for promoting healthy ageing, particularly among older fallers. Hence, the primary objective of our study was to identify key factors that explain variation in HRQoL among community dwelling older adults at risk of falls.
Methods
We conducted a longitudinal analysis of a 12-month prospective cohort study at the Vancouver Falls Prevention Clinic (n = 148 to 286 depending on the analysis). We constructed linear mixed models where assessment month (0, 6, 12) was entered as a within-subjects repeated measure, the intercept was specified as a random effect, and predictors and covariates were entered as between-subjects fixed effects. We also included the predictors by sex and predictor by sex by time interaction terms in order to investigate sex differences in the relations between the predictor variable and the outcome variable, the EQ-5D.
Results
Our primary analysis demonstrated a significant mobility (assessed using the Short Performance Physical Battery and the Timed Up and Go) by time interaction (p < 0.05) and mobility by time by sex interaction (p < 0.05). The sensitivity analyses demonstrated some heterogeneity of these findings using an imputed and a complete case analysis.
Conclusions
Mobility may be an important predictor of changes in HRQoL over time. As such, mobility is a critical factor to target for future intervention strategies aimed at maintaining or improving HRQoL in late life.
doi:10.1186/s12955-015-0299-0
PMCID: PMC4501103  PMID: 26168922
Mobility; Quality of life; Falls; Older adults
13.  Assessing resilience in adolescence: The Spanish adaptation of the Adolescent Resilience Questionnaire 
Background
The concept and assessment of resilience have attracted considerable attention in recent years, but none of the instruments developed to measure resilience in adolescents have been adapted to the Spanish context. The Adolescent Resilience Questionnaire (ARQ) provides a comprehensive and multidimensional assessment of the resources associated with resilience in adolescents.
Methods
This study analyzes the psychometric properties of the ARQ. Participants included a community sample of 1101 Spanish adolescents (53.5 % boys) aged 12–17 years (M = 14.51; SD = 1.755).
Results
Results confirm the factor structure based on 12 scales. Internal consistency was generally adequate (between .60 and .84), although the unacceptable coefficient for the Empathy/Tolerance scale (α = .38) means that this scale needs to be revised for the Spanish context. Relationships between ARQ scales and psychopathology were in the expected direction and magnitude. Some gender differences were observed, with higher scores for boys on Confidence and Negative cognition.
Conclusions
The Spanish version of the ARQ can help to identify personal characteristics associated with resilience and signs of positive engagement with family, peers, school, and the community. It can identify those adolescents most likely to show resilience in response to adversity, as well as those who may be vulnerable under situations of stress.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-015-0259-8) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-015-0259-8
PMCID: PMC4498517  PMID: 26159814
Resilience; Adolescence; Assessment; Adaptation; Spain
14.  Oral health-related quality of life after prosthetic rehabilitation: a longitudinal study with the OHIP questionnaire 
Background
Aspects of oral health related quality of life (OHRQoL) attracted an increased attention recently.
Objective
The aim of the study was to assess self-reported oral health related quality of life (OHRQoL) among patients requiring prosthetic rehabilitation and to determine the rate of improvement 1 month and 6–12 months after therapy. In addition, effect of age, gender, oral health indicators and denture types before treatment were assessed on OHRQoL as evaluated and reported by the patients.
Methods
Hungarian version of OHIP-49 (OHIP-49-H) questionnaire was completed before oral rehabilitation (T0-phase) by 389 patients undergoing prosthetic replacement. After 1 month (T1-phase) and 6–12 months (T2-phase) recall periods 235 and 92 patients completed the questionnaire. The median interquartile range (IQR) values of the total OHIP-49-H score were calculated for T0-, T1- and T2-phases. Reliability of the questionnaire was checked by Cronbach’s statistics. Age, gender, oral health indicators and denture types of patients before and after treatment were recorded and treatment-associated changes in OHRQoL were evaluated.
Results
The study demonstrated the excellent reliability and internal consistency of OHIP-49-H by a high and narrow range of Cronbach’s alpha value (0.81-0.93). A median OHIP-49-H score of 52; IQR = 25-83 demonstrated a poor OHRQoL on first admission. Decreasing median total OHIP-49-H scores 1 month (24; IQR = 9-51; p < 0.001) and 6–12 months (20; IQR = 7-37; p = 0,055) after therapy indicated an improvement of OHRQoL. Patients’ age and CPI value assessed before treatment proved to be significant factors of OHRQoL.
Conclusions
Here we presented representative data about self-assessed OHRQoL of patients requiring prosthetic treatment from Hungary using OHIP-49-H questionnaire. The results demonstrated that the restoration of oral health was associated with an improvement in patients’ OHRQoL. According to the demographical and T0 phase clinical status, the treatment was more effective in the respect of OHIP-49-H score improvement among females (than among males), among younger (than among more aged), and among patients with more serious CPI assessed at T0. The type of prosthetic interventions did not exert a significant effect on total OHIP-49-H score, suggesting that the improvement in OHRQoL is independent from the type of denture applied.
doi:10.1186/s12955-015-0289-2
PMCID: PMC4496854  PMID: 26156102
Quality of life; Prosthodontics; Oral health; Oral Health Impact Profile (OHIP) questionnaire
15.  Impact of dental health on children’s oral health-related quality of life: a cross-sectional study 
Background
To assess the impact of children’s dental health status (DHS) on their oral health-related quality of life (OHRQoL).
Methods
Participants were 11- and 12-year-old children attending public schools in the Kuwait Capital Region. Children’s DHS was evaluated by clinical examinations and presented using decayed, missed, filled teeth/surface (DMFT/dmft, DMFS/dmfs); restorative (RI), plaque (PI); and pulp, ulcers, fistula, abscess (PUFA) indices. Children’s OHRQoL was assessed using Child’s Perception Questionnaire 11–14 (CPQ11–14). Means (SD) and frequencies were used for data description. Different factors were analyzed as predictors of OHRQoL by logistic regression analysis.
Results
A total of 440 children aged 11–12 years (50.7 % females) participated in this cross-sectional study. Mean (SD) DMFT/dmft, RI, PI, and PUFA scores were 2.91(2.75), 0.21 (0.34), 3.59 (1.63), 0.31 (0.85), respectively. The mean total CPQ11–14 was 20.72 (16.81). Mean scores of oral-symptoms, functional-limitations, emotional and social well-being were 4.26 (3.32), 5.40 (4.92), 5.48 (6.15), and 5.33 (6.05), respectively. Children with more than four fillings were 95 % less likely to have had oral symptoms than those with no fillings. Children with a DMFT/dmft of 2–3 were 2.8 times more likely to have functional limitation than those with a DMFT/dmft of 0, while children with a DMFT/dmft of more than 4 were 4.4 times more likely to experience limitations. Having two or three non-cavitated lesions reduced the odds of having functional-limitation by 58 %. Children with more than four missing teeth were 45 % more likely to experience emotional stress. Having more than four fissure sealants reduced the odds of having emotional stress by 46 %.
Conclusions
The increase in the number of carious teeth was associated with a limitation in oral functions. Preventive treatment had a positive impact on children’s emotional well-being and restorative treatments improved their oral function.
doi:10.1186/s12955-015-0283-8
PMCID: PMC4491877  PMID: 26149439
Quality of life; Caries; Oral Health; Restorative index; Children; Oral Symptoms
16.  Quantifying the importance of disease burden on perceived general health and depressive symptoms in patients within the Mayo Clinic Biobank 
Background
Deficits in health-related quality of life (HRQOL) may be associated with worse patient experiences, outcomes and even survival. While there exists evidence to identify risk factors associated with deficits in HRQOL among patients with individual medical conditions such as cancer, it is less well established in more general populations without attention to specific illnesses. This study used patients with a wide range of medical conditions to identify contributors with the greatest influence on HRQOL deficits.
Methods
Self-perceived general health and depressive symptoms were assessed using data from 21,736 Mayo Clinic Biobank (MCB) participants. Each domain was dichotomized into categories related to poor health: deficit (poor/fair for general health and ≥3 for PHQ-2 depressive symptoms) or non-deficit. Logistic regression models were used to test the association of commonly collected demographic characteristics and disease burden with each HRQOL domain, adjusting for age and gender. Gradient boosting machine (GBM) models were applied to quantify the relative influence of contributors on each HRQOL domain.
Results
The prevalence of participants with a deficit was 9.5 % for perception of general health and 4.6 % for depressive symptoms. For both groups, disease burden had the strongest influence for deficit in HRQOL (63 % for general health and 42 % for depressive symptoms). For depressive symptoms, age was equally influential. The prevalence of a deficit in general health increased slightly with age for males, but remained stable across age for females. Deficit in depressive symptoms was inversely associated with age. For both HRQOL domains, risk of a deficit was associated with higher disease burden, lower levels of education, no alcohol consumption, smoking, and obesity. Subjects with deficits were less likely to report that they were currently working for pay than those without a deficit; this association was stronger among males than females.
Conclusions
Comorbid health burden has the strongest influence on deficits in self-perceived general health, while demographic factors show relatively minimal impact. For depressive symptoms, both age and comorbid health burden were equally important, with decreasing deficits in depressive symptoms with increasing age. For interpreting patient-reported metrics and comparison, one must account for comorbid health burden.
doi:10.1186/s12955-015-0285-6
PMCID: PMC4490595  PMID: 26138599
Health-related quality of life; Biobank; Disease burden; Relative influence
17.  Recovery from musculoskeletal injury: the role of social support following a transport accident 
Background
Social support can be an important coping resource for persons recovering from injury. In this study, we examined the effects of family structure and sources of social support on physical health, persistent pain and return to work (RTW) outcomes following musculoskeletal injury (MSI) sustained in a transport accident.
Methods
Secondary analysis of Transport Accident Commission (TAC) cross-sectional surveys held in 2010 and 2011 was conducted. In total 1649 persons with MSI were identified and included. Family structure was determined by marital status and number of children. Sources of social support were measured as perceived help from family, friends, neighbours and employers. Physical health was measured with the Physical Component Summary (PCS) score of the Short-Form-12 Health Survey Version 2. Persistent pain was defined as self-reported persistent pain experienced in the last 3 months, and RTW was defined as being back at work for ≥3 months at time of interview. Multiple linear and logistic regressions were used for the analyses.
Results
Family and friends’ support was associated with better physical health among persons with >1 day hospital stay. Being married or in a de facto relationship was associated with greater PCS score among non-hospitalised persons. Being widowed/separated/divorced was associated with more self-reported persistent pain (odds ratio 1.62 [95 % confidence intervals 1.11–2.37]). Support from family (0.40 [0.24–0.68]), friends (0.29 [0.17–0.47]) and neighbours (0.59 [0.41–0.84]) was associated with less persistent pain. Among women, support from family (0.09 [0.01–0.78]) was negatively associated with RTW, whereas support from friends (3.03 [1.15–8.02]) was positively associated with RTW. These associations were not observed among men. For both men (5.62 [2.77–11.38]) and women (7.22 [2.58–20.20]), support from employers was positively associated with RTW.
Conclusion
Family structure and sources of social support had a positive impact on physical health, persistent pain and RTW following MSI. This study highlights the importance of identifying people who have limited access to a social support network. Those with limited access to social support after a transport accident could potentially benefit from the provision of formal sources of practical and psychological support.
doi:10.1186/s12955-015-0291-8
PMCID: PMC4490643  PMID: 26138816
Social support; Musculoskeletal injury; Injury outcomes
18.  Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study 
Aim
To study health related quality of life (HRQOL) and depressive symptoms in adolescents with chronic fatigue syndrome (CFS) and to investigate in which domains their HRQOL and depressive symptoms differ from those of healthy adolescents.
Background and objective
Several symptoms such as disabling fatigue, pain and depressive symptoms affect different life domains of adolescents with CFS. Compared to adolescents with other chronic diseases, young people with CFS are reported to be severely impaired, both physiologically and mentally. Despite this, few have investigated the HRQOL in this group.
Method
This is a cross-sectional study on HRQOL including 120 adolescents with CFS and 39 healthy controls (HC), between 12 and 18 years. The Pediatric Quality of Life Inventory™, 4.0 (PedsQL) was used to assess HRQOL. The Mood and Feelings Questionnaire assessed depressive symptoms. Data were collected between March 2010 and October 2012 as part of the NorCAPITAL project (Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial). Linear and logistic regression models were used in analysis, and all tests were two-sided.
Results
Adolescents with CFS reported significantly lower overall HRQOL compared to HCs. When controlling for gender differences, CFS patients scored 44 points lower overall HRQOL on a scale from 0–100 compared to HCs. The domains with the largest differences were interference with physical health (B = −59, 95 % CI −54 to −65) and school functioning (B = −52, 95 % CI −45 to −58). Both depressive symptoms and being a patient were independently associated with lower levels of HRQOL
Conclusion
The difference in HRQOL between CFS patients and healthy adolescents was even larger than we expected. The large sample of adolescents with CFS in our study confirms previous findings from smaller studies, and emphasizes that CFS is a seriously disabling condition that has a strong impact on their HRQOL. Even though depressive symptoms were found in the group of patients, they could not statistically explain the poor HRQOL.
doi:10.1186/s12955-015-0288-3
PMCID: PMC4490669  PMID: 26138694
adolescents; chronic fatigue syndrome; CFS/ME; health related quality of life; public health nurse; and pediatrics
19.  “Married with children” the influence of significant others in TTO exercises 
Background
Which responder characteristics influence TTO scores remains underexplored. More research is needed in order to understand (differences in) TTO scores, but also in the context of generating representative health state valuations for some population. Previous studies have found age, gender, marital status and subjective life expectancy to influence the number of years traded off.
Objective
This study aimed to investigate which other responder characteristics influence TTO responses, with an emphasis on consideration of significant others, such as partners and children.
Methods and Design
We performed a web-based survey in a representative sample of the Dutch general public (aged 18–65). Data on demographics, health status and expectations about future length and quality of life were gathered. Respondents valued three distinct health states using TTO.
Results
A total of 1067 respondents completed the questionnaire. Sixty percent of respondents had children and 49 % were married. The mean number of years traded off increased with severity of health states. Higher age and living together were positively associated with number of years traded off. Increases in subjective life expectancy, having children and being male (were negatively associated with the number of years traded-off.
Conclusion
Age, gender and subjective life expectancy, living together and having children were significantly associated with TTO responses. Consideration of significant others in TTO exercises thus may be important in understanding (differences in) TTO responses and when drawing representative samples from the general public.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-015-0276-7) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-015-0276-7
PMCID: PMC4487600  PMID: 26135391
20.  Development and content validity testing of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies 
Background
Hereditary Angioedema (HAE), a rare genetic disease, manifests as intermittent, painful attacks of angioedema. Attacks vary in frequency and severity and include skin, abdominal and life-threatening laryngeal swellings. This study aimed to develop a patient reported outcome (PRO) tool for the assessment of HAE attacks, including their management and impact on patients’ lives, for use in clinical studies, or by physicians in general practice.
Methods
The results of open-ended face to face concept elicitation interviews with HAE patients in Argentina (n = 10) and the US (n = 33) were used to develop the first draft questionnaire of the HAE patient reported outcomes questionnaire (HAE PRO). Subsequently, in-depth cognitive debriefing interviews were performed with HAE patients in the UK (n = 10), Brazil (n = 10), Germany (n = 11) and France (n = 12). Following input from eight multinational clinical experts further cognitive interviews were conducted in the US (n = 12) and Germany (n = 12). Patients who experienced abdominal, cutaneous or laryngeal attacks of varying severity levels were included in all rounds of interviews. Across the rounds of interviews patients discussed their HAE attack symptoms, impacts and treatments. Cognitive debriefing interviews explored patient understanding and relevance of questionnaire items. All interviews were conducted face to face following a pre-defined semi-structured interview guide in the patient’s native language.
Results
Patients reported a variety of HAE symptoms, attack triggers, warning signs, attack impacts and treatment options which were used to develop the HAE PRO. The HAE PRO was revised and refined following input from patients and clinical experts. The final 18-item HAE PRO provides an assessment of the HAE attack experience including symptoms, impacts, treatment requirements, healthcare resource use and loss of productivity caused by HAE attacks.
Conclusions
Patient and expert input has contributed to the development of a content valid questionnaire that assesses concepts important to HAE patients globally. HAE patients across cultures consider the HAE PRO a relevant and appropriate assessment of HAE attacks and treatment.
doi:10.1186/s12955-015-0292-7
PMCID: PMC4487558  PMID: 26129930
Hereditary angioedema; Patient reported outcome; Questionnaire; Qualitative; Patient; Concept elicitation; Cognitive debriefing; Content validity
21.  Reliability and validity of a vertical numerical rating scale supplemented with a faces rating scale in measuring fatigue after stroke 
Background
Poststroke fatigue is a persistent and distressing symptom among stroke survivors. In this study, we investigated the reliability and validity of a vertical numerical rating scale supplemented with a faces rating scale (NRS-FRS) in measuring poststroke fatigue.
Methods
The fatigue intensity of 106 individuals with stroke was measured twice, 1 week apart, using a vertical NRS-FRS to measure test-retest reliability. The intraclass correlation coefficient, a relative reliability index, was calculated to examine the degree of consistency and agreement between the two test occasions. Absolute reliability indices, including the standard error of measurement, minimal detectable change, and Bland-Altman limits of agreement, were used to quantify measurement errors and determine systematic biases of the two test occasions. We also administered the vertical NRS concurrently as a comparator measure for assessing fatigue in 50 consecutive patients with stroke who were recruited later in the study period. The Spearman rank correlation coefficient (ρ) was used to examine the concurrent validity of the NRS-FRS. Discriminant validity was assessed by means of receiver operating characteristic curves, sensitivity, and specificity.
Results
The intraclass correlation coefficient was 0.95 for the NRS-FRS. The standard error of measurement and the minimal detectable change at the 95 % confidence interval of the NRS-FRS were 0.50 and 1.39, respectively. The Bland-Altman analyses showed no significant systematic bias between the repeated measurements. A narrow range of the limits of agreement was shown on the Bland-Altman plot, indicating the NRS-FRS had high stability and low variation between the two test occasions. The correlations between the NRS-FRS and NRS were good at test (ρ = 0.85) and retest (ρ = 0.84). Compared with the NRS cutoff value of ≥1, sensitivity with the NRS-FRS at test and retest was 94 and 92 % and specificity was 79 and 90 %, respectively.
Conclusions
This study provides further evidence of the reliability and validity of the NRS-FRS in measuring fatigue intensity in patients with stroke. The NRS-FRS had high sensitivity and specificity. The NRS-FRS may be a reliable and valid measure for clinicians and researchers to assess fatigue and determine whether a real change has occurred in groups and at the individual level of patients with stroke.
doi:10.1186/s12955-015-0290-9
PMCID: PMC4486436  PMID: 26122080
Fatigue; Reliability; Numerical rating scale; Faces rating scale; Stroke
22.  Health state utilities associated with major clinical events in the context of secondary hyperparathyroidism and chronic kidney disease requiring dialysis 
Background
Patients with chronic kidney disease (CKD) and secondary hyperparathyroidism (SHPT) who require dialysis are at increased risk for cardiovascular events and bone fractures. To assist in economic evaluations, this study aimed to estimate the disutility of these events beyond the impact of CKD and SHPT.
Methods
A basic one-year health state was developed describing CKD and SHPT requiring dialysis. Further health states added acute events (cardiovascular events, fractures, and surgical procedures) or chronic post-event effects. Acute health states described a year including an event, and chronic health states described a year subsequent to an event. General population participants in Canada completed time trade-off interviews from which utilities were derived. Pairwise comparisons were made between the basic state and event, and between comparable health states.
Results
A total of 199 participants (54.8% female; mean age = 46.3 years) completed interviews. Each health state had ≥130 valuations. The mean (SD) utility of the basic health state was 0.60 (0.34). For acute events, mean utility differences versus the basic state were: myocardial infarction, −0.06; unstable angina, −0.05; peripheral vascular disease (PVD) with amputation, −0.33; PVD without amputation, −0.11; heart failure, −0.14; stroke, −0.30; hip fracture, −0.14; arm fracture, −0.04; parathyroidectomy, +0.02; kidney transplant, +0.06. Disutilities for chronic health states were: stable angina, −0.09; stroke, −0.27; PVD with amputation, −0.30; PVD without amputation, −0.12; heart failure, −0.14.
Conclusions
Cardiovascular events and fractures were associated with lower utility scores, suggesting a perceived decrease in quality of life beyond the impact of CKD and SHPT.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-015-0266-9) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-015-0266-9
PMCID: PMC4487205  PMID: 26122041
Utility; Chronic kidney disease; Secondary hyperparathyroidism; End-stage renal disease; Standard gamble
23.  Impact of overactive bladder on quality of life and resource use: results from Korean Burden of Incontinence Study (KOBIS) 
Background
To evaluate the impact of overactive bladder (OAB) on quality of life (QOL), resource use and productivity loss in patients recruited from six hospitals in Korea.
Methods
This cross-sectional survey recruited 625 OAB patients between July to December 2013. Patients were categorised into four groups based on the average number of urinary incontinence (UI) episodes over the past three days (0, 1, 2–3 and ≥4 UI/day). QOL was measured using the Incontinence-Specific Quality of Life Instrument (I-QOL), the Overactive Bladder Questionnaire (OAB-q), and a generic health-related utility instrument (EQ-5D). Information on hospital and clinic visit frequency, and continence pads use were also collected. Work productivity was assessed using the Work Productivity and Activity Impairment (WPAI) questionnaire. Between group differences were assessed using ANOVA. Multivariable regression analyses were performed to examine the independent effects of OAB symptoms on QOL.
Results
Severity of UI showed a significant linear relationship with QOL, with clinically meaningful differences between each UI severity category. Compared to the dry category, patients in the most severe category (≥4 UI/day) had significantly lower I-QOL scores (69.8 vs 42.6; p < 0.0001), greater symptom bother on the OAB-q (30.4 vs 64.6; p < 0.0001), and poorer EQ-5D utility (0.848 vs 0.742; p < 0.001). Multivariable analyses showed that UI severity, frequency, urgency, and nocturia are independently associated with poorer QOL. Incontinence severity is also significantly associated with cost of incontinence pads (p < 0.0001), and a greater interference with work and regular activities (p = 0.001), however, no significant difference in hospital and clinic visits were observed.
Conclusion
Severity of UI is a key contributor to the disease burden of OAB in Korean patients, even after taking into account the impact of other symptoms associated with OAB.
Electronic supplementary material
The online version of this article (doi:10.1186/s12955-015-0274-9) contains supplementary material, which is available to authorized users.
doi:10.1186/s12955-015-0274-9
PMCID: PMC4480453  PMID: 26113125
Overactive urinary bladder; Urinary incontinence; Quality of life; Cost of illness
24.  Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures 
Background
Health services are increasingly focused on measuring and monitoring outcomes, particularly those that reflect patients’ priorities. To be meaningful, outcomes measured should be valued by patients and carers, be consistent with what health professionals seek to achieve, and be robust in terms of measurement properties.
The aim of this study was (i) to seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children with neurodisability, and (ii) to appraise which multidimensional patient reported outcome measures (PROMs) could be used to assess salient health domains.
Methods
Relevant outcomes were identified from (i) qualitative research with children and young people with neurodisability and parent carers, (ii) Delphi survey with health professionals, and (iii) systematic review of PROMs. The International Classification of Functioning Disability and Health provided a common language to code aspects of health. A subset of stakeholders participated in a prioritisation meeting incorporating a Q-sorting task to discuss and rank aspects of health.
Results
A total of 33 pertinent aspects of health were identified. Fifteen stakeholders from the qualitative and Delphi studies participated in the prioritisation meeting: 3 young people, 5 parent carers, and 7 health professionals. Aspects of health that emerged as more important for families and targets for health professionals were: communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health, community and social life, behaviour, toileting and safety. Whilst available PROMs measure many aspects of health in the ICF, no single PROM captures all the key domains prioritised as for children and young people with neurodisability. The paucity of scales for assessing communication was notable.
Conclusions
We propose a core suite of key outcome domains for children with neurodisability that could be used in evaluative research, audit and as health service performance indicators. Future work could appraise domain-specific PROMs for these aspects of health; a single measure assessing the key aspects of health that could be applied across paediatric neurodisability remains to be developed.
doi:10.1186/s12955-015-0284-7
PMCID: PMC4478638  PMID: 26108625
Children; Neurodisability; Patient reported outcome; Prioritisation; Core outcome set
25.  Health-related quality of life for medical rescuers one month after Ludian earthquake 
Background
An earthquake struck Ludian in Yunnan province of China on August 3, 2014, resulting in 3143 injuries, 617 deaths, and 112 missing persons. Our study aimed at estimating the quality of life and associated determinants among medical rescuers after Ludian earthquake.
Methods
A cross-sectional survey was performed among personnel from three hospitals that assumed rescue tasks in Ludian earthquake. Descriptive statistics, t-tests, ANOVA and stepwise linear regression analysis were used for data analysis.
Results
The mean scores on the physical component summary (PCS) and mental component summary (MCS) were 49.86 (SD = 6.01) and 35.85(SD = 6.90), respectively. Lower PCS in the aftermath of an earthquake was associated with non-military medical rescuers, elderly age, and being trapped/in danger while lower MSC in the aftermath of an earthquake was associated with non-military medical rescuers, young age, being female, being trapped/in danger and low education degree.
Conclusions
In conclusion, our study demonstrates that medical rescuers are at risk for a lower HRQoL after exposure to Ludian earthquake. The results of this study help expand our knowledge of health-related quality of life among medical rescuers after the Ludian earthquake.
doi:10.1186/s12955-015-0286-5
PMCID: PMC4479311  PMID: 26108679
Quality of life; Earthquake; Medical rescuers; Risk factor

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