Determinants of Health-Related Quality of Life in School-Aged Children: A General Population Study in the Netherlands

BackgroundHealth related quality of life is the functional effect of a medical condition and/or its therapy upon a patient, and as such is particularly suitable for describing the general health of children. The objective of this study was to identify and confirm potential determinants of health-related quality of life in children aged 4-11 years in the general population in the Netherlands. Understanding such determinants may provide insights into more targeted public health policy.MethodsAs part of a population based cross sectional study, the Child Health Questionnaire (CHQ) Parental Form 28 was used to measure health-related quality of life in school-aged children in a general population sample. Parents of 10,651 children aged 4-11 years were interviewed from January 2001 to December 2009.ResultsMultivariate and regression analyses demonstrated a declined CHQ Physical Summary score for children who had >1 conditions, disorders or acute health complaints and who were greater consumers of healthcare; children with a non-western immigrant background; and children whose parents did not work. Lower CHQ Psychosocial Summary score was reported for children who had >1 conditions, disorders or acute health complaints, boys, children of single parents and obese children.ConclusionThe best predictors of health-related quality of life are variables that describe use of health care and the number of disorders and health complaints. Nonetheless, a number of demographic, socio-economic and family/environmental determinants contribute to a child’s health-related quality of life as well.     

Gastrointestinal Symptoms are Still Prevalent and Negatively Impact Health-Related Quality of Life: A Large Cross-Sectional Population Based Study in The Netherlands

Background

Over the last decades important risk factors for gastrointestinal symptoms have shifted, which may have changed its population prevalence. The aim of this study was to assess the current prevalence of gastrointestinal symptoms, appraise associated factors and assess health-related quality of life in the general population.

Methods

A total of 51,869 questionnaires were sent to a representative sample of the Dutch adult general population in December 2008. Demographic characteristics, gastrointestinal symptoms, health-related quality of life, medication use and co-morbidity were reported. We used multivariable logistic regression analysis to determine factors associated with gastrointestinal symptoms.

Results

A total of 18,317 questionnaires were returned, and 16,758 were eligible for analysis. Prevalence of gastrointestinal symptoms was 26%. Most frequent symptoms were bloating (63%), borborygmi (60%) and flatulence (71%). Female gender (adjusted OR (aOR) 1.59, 95% CI 1.43–1.77), asthma/COPD (aOR 1.47, 95% CI 1.21–1.79), use of paracetamol (aOR 1.33, 95% CI 1.20–1.47), antidepressants (aOR 1.56, 95% CI 1.22–2.00) and acid-suppressive medication were independently associated with presence of gastrointestinal symptoms. Age over 65 years (aOR 0.75, 95% CI 0.65–0.87), and use of statins (aOR 0.75, 95% CI 0.61–0.93) were associated with a lower prevalence of gastrointestinal symptoms. Respondents with gastrointestinal symptoms had a lower mean health-related quality of life of 0.81 (SD = 0.21) compared to 0.92 (SD = 0.14) for persons without gastrointestinal symptoms (P<0.01).

Conclusions

Prevalence of gastrointestinal symptoms in the Dutch community is high and associated with decreased health-related quality of life.     

Chocolate and Health-Related Quality of Life: A Prospective Study

Background

Chocolate consumption has been associated with a short-term reduction in blood pressure and cholesterol, and improvement of insulin sensitivity; however, participants could not be aware of presenting hypertension or hypercholesterolemia. Moreover, the effect of chocolate on mental health is uncertain. This study assessed the association of regular chocolate consumption with the physical (PCS) and mental (MCS) components of health-related quality of life (HRQL).

Materials and methods

We analyzed data from a cohort of 4599 individuals recruited in 2008–2010 and followed-up once prospectively to January 2013 (follow-up mean: 3.5 years). Regular chocolate consumption was assessed at baseline with a validated diet history. HRQL was assessed with the SF-12 v.2 at baseline and at follow-up. Analyses were performed with linear regression and adjusted for the main confounders, including HRQL at baseline.

Results

At baseline, 72% of the study participants did not consume chocolate, 11% consumed ≤10 g/day and 17% >10 g/day. Chocolate consumption at baseline did not show an association with PCS and MCS of the SF-12 measured three years later. Compared to those who did not consume chocolate, the PCS scores were similar in those who consumed ≤10g/day (beta: -0.07; 95% confidence interval (95% CI): -0.94 to 0.80) and in those who consumed >10g/day (beta: 0.02; 95% CI:-0.71 to 0.75); corresponding figures for the MCS were 0.29; 95% CI: -0.67 to 1.26, and -0.57; 95%CI: -1.37 to 0.23. Similar results were found for sex, regardless of obesity, hypertension, hypercholesterolemia, diabetes or depression.

Conclusions

No evidence was found of an association between chocolate intake and the physical or mental components of HRQL.     

Long-Term Health-Related Quality of Life in German Patients with Juvenile Idiopathic Arthritis in Comparison to German General Population

ObjectiveAims of the study were to investigate health-related quality of life (HRQOL) in adult patients with former diagnosis of Juvenile Idiopathic Arthritis (JIA), to compare their HRQOL with the general population and to identify factors related to a poor outcome.MethodsIn 2012, a cross-sectional survey was performed by mailing a questionnaire to a large cohort of former and current patients of the German Centre for Rheumatology in Children and Adolescents. Only adult patients (≥18 years) with a diagnosis compatible with JIA were included (n = 2592; response 66%). The questionnaire included information about HRQOL (EQ5D), disease-related questions and socio-demographics. Prevalence and 95% confidence intervals (CI) of problems with mobility, self-care, usual activities, pain and anxiety/depression were standardized to the German general population. Factors associated with low HRQOL in JIA patients were identified using logistic regression models.ResultsSixty-two percent of the study population was female; age range was 18–73 years. In all dimensions, JIA patients reported statistically significantly more problems than the general population with largest differences in the pain dimension (JIA patients 56%; 95%CI 55–58%; general population 28%; 26–29%) and the anxiety/depression dimension (28%; 27–29% vs. 4%; 4–5%). Lower HRQOL in JIA patients was associated with female sex, older age, lower level of education, still being under rheumatic treatment and disability.ConclusionsHRQOL in adult JIA patients is considerably lower than in the general population. As this cohort includes historic patients the new therapeutic schemes available today are expected to improve HRQOL in future.     

Health-Related Quality of Life in Children and Adolescents with Nonclassic Congenital Adrenal Hyperplasia

Objective: Nonclassic congenital adrenal hyperplasia (NCCAH) is a late-onset milder form of congenital adrenal hyperplasia that differs dramatically from the classic form. Health-related quality of life (HRQOL) in pediatric patients with the sole diagnosis of NCCAH has not been determined; therefore, in this study, we aimed to determine whether HRQOL is compromised in comparison to the general population.Methods: Single-center, cross-sectional, case-control study. Twenty-three hydrocortisone-treated children and adolescents (7 males) diagnosed with NCCAH by cosyntropin stimulation test and CYP21A2 gene mutation analysis were recruited to this study; 6 healthy siblings were also recruited. HRQOL was assessed by the child and parent-proxy PedsQL Inventory and compared between NCCAH subjects and healthy siblings. HRQOL scores of NCCAH subjects were compared with known standards from the U.S. and Israeli general healthy populations. Anthropometric measurements of children and parents were performed and compared between NCCAH subjects and healthy siblings. Pearson correlation coefficients were calculated.Results: HRQOL scores of the participants and parents did not differ between NCCAH subjects and healthy siblings. The HRQOL emotional domain scores of the NCCAH patients and parent were significantly lower than the healthy U.S. pediatric population (P = .046) but not different from established standards of the healthy Israeli population (P = .583). Anthropometric measurements were within the normal range and did not differ between NCCAH subjects and their siblings. Total, school functioning, and psychosocial HRQOL domain scores were positively correlated with body mass index–standard deviation score in NCCAH subjects.Conclusion: HRQOL was not adversely affected by NCCAH among adequately treated children and adolescents.Abbreviations: BMI = body mass index; CAH = congenital adrenal hyperplasia; HRQOL = health-related quality of life; NCCAH = nonclassic congenital adrenal hyperplasia; PedsQL = Pediatric Quality of Life Inventory; SDS = standard deviation score     

Association between Body Mass Index and Health-Related Quality of Life: The "Obesity Paradox" in 21,218 Adults of the Chinese General Population

Background

There was no consistent recognition of the association between high or low body mass index (BMI) and health related quality of life (HRQL). The aim of this research was to study the association between BMI and HRQL in Chinese adults, and to further explore the stability of that association in the subgroup analysis stratified by status of chronic conditions.

Methods

A total of 21,218 adults aged 18 and older were classified as underweight, normal weight, overweight, class I obese, and class II obese based on their BMI. HRQL was measured by the SF-36 Health Survey. The independent impact of each BMI category on HRQL was examined through standard least squares regression by comparing the difference of SF-36 scores and the minimum clinically important differences (MCID), which was defined as 3 points.

Results

Compared to the normal weight, the class I obese was significantly associated with better HRQL scores in the mental component summary (MCS) (75.1 vs. 73.4, P<0.001). The underweight had the lowest score in both the physical components summary (PCS) (75.4 vs. 77.5, P<0.001) and mental components summary (MCS) (71.8 vs. 73.4, P<0.001). For the MCID, the HRQL score was reduced by more than 3 points in the physical functioning for the class II obese (D=-3.43) and the general health for the underweight (D=-3.71). Stratified analyses showed a similar result in the health subjects and chronic conditions, and it was significant in the chronic conditions.

Conclusions

The class I obese showed the best HRQL, especially in the mental domain. The worst HRQL was found in the underweight. The class II obese reduced HRQL in the physical functioning only. “Obesity paradox” was more obvious in the participants with chronic conditions.     

Associations between Disease Awareness and Health-Related Quality of Life in a Multi-Ethnic Asian Population

Background

Health related quality of life (HRQoL) is an important dimension of individuals'' well-being, and especially in chronic diseases like diabetes and hypertension. The objective of this study was to evaluate the contributions of disease process, comorbidities, medication or awareness of the disease to HRQoL in diabetes mellitus, hypertension and dyslipidemia.

Methods

This was a cross-sectional study of 3514 respondents from the general community in Singapore, assessed for HRQoL, disease and comorbid conditions through self-report, clinical and laboratory investigations. HRQoL was assessed using SF-36 health survey version 2. For each condition, participants were categorized as having 1) no disease, 2) undiagnosed, 3) diagnosed, not taking medication, and 4) diagnosed, taking medication. Analysis used one-way ANOVA and multiple linear regression.

Results

Diagnosed disease was associated with lower physical health component summary (PCS) scores across all three conditions. After adjustment for comorbidities, this association remained significant only for those not on medication in diabetes (−2.7±1.2 points, p = 0.03) and dyslipidemia (−1.3±0.4 points, p = 0.003). Diagnosed hypertension (no medication −2.6±0.9 points, p = 0.002; medication −1.4±0.5 points, p = 0.004) and dyslipidemia (no medication −0.9±0.4 points, p = 0.03; medication −1.9±0.5 points, p<0.001) were associated with lower mental health component summary (MCS) scores. Undiagnosed disease was associated with higher MCS in diabetes (2.4±1.0 points, p = 0.01) and dyslipidemia (0.8±0.4 points, p = 0.045), and PCS in hypertension (1.2±0.4 points, p = 0.004).

Conclusions

Disease awareness was associated with lower HRQoL across the diseases studied, with PCS associations partially mediated by comorbidities. Equally importantly, undiagnosed disease was not associated with HRQoL deficits, which may partly explain why these individuals do not seek medical care.     

Pediatric Health-Related Quality of Life: A Structural Equation Modeling Approach

Objectives

One of the most referenced theoretical frameworks to measure Health Related Quality of Life (HRQoL) is the Wilson and Cleary framework. With some adaptions this framework has been validated in the adult population, but has not been tested in pediatric populations. Our goal was to empirically investigate it in children.

Methods

The contributory factors to Health Related Quality of Life that we included were symptom status (presence of chronic disease or hospitalizations), functional status (developmental status), developmental aspects of the individual (social-emotional) behavior, and characteristics of the social environment (socioeconomic status and area of education). Structural equation modeling was used to assess the measurement structure of the model in 214 German children (3–5 years old) participating in a follow-up study that investigates pediatric health outcomes.

Results

Model fit was χ2 = 5.5; df = 6; p = 0.48; SRMR  = 0.01. The variance explained of Health Related Quality of Life was 15%. Health Related Quality of Life was affected by the area education (i.e. where kindergartens were located) and development status. Developmental status was affected by the area of education, socioeconomic status and individual behavior. Symptoms did not affect the model.

Conclusions

The goodness of fit and the overall variance explained were good. However, the results between children'' and adults'' tests differed and denote a conceptual gap between adult and children measures. Indeed, there is a lot of variety in pediatric Health Related Quality of Life measures, which represents a lack of a common definition of pediatric Health Related Quality of Life. We recommend that researchers invest time in the development of pediatric Health Related Quality of Life theory and theory based evaluations.     

The Effect of Measles on Health-Related Quality of Life: A Patient-Based Survey

Background

Measles is a highly contagious and potentially fatal illness preventable through vaccination. Outbreaks in the UK and many other European countries have been increasing over recent years, with over 3,207 laboratory-confirmed cases reported by Public Health England from January 2012 to the end of June 2013. To aid rational decision making regarding measles control versus other use of healthcare resources, it is important to measure the severity of measles in units that are comparable to other diseases. The standard metric for this in the UK is the quality-adjust life year (QALY). To our knowledge, the impact of measles on health-related quality of life (HRQoL) in terms of QALYs has not been quantified.

Methods and Findings

Individuals with confirmed measles were sent questionnaires requesting information on the short-term impact of the illness on their HRQoL using the EuroQol EQ-5D-3L questionnaire. HRQoL was reported for the day the questionnaire was received, the worst day of infection and at follow-up three weeks later. 507 questionnaires were sent to individuals with confirmed measles with 203 returned (40%). The majority of respondents were not vaccinated. The mean time off work or school was 9.6 days. The mean duration of perceived illness was 13.8 days. The mean number of QALYs lost was 0.019 (equivalent to 6.9 days). The overall burden of disease in terms of QALYs lost in England based on the total number of confirmed cases in the twelve month period from 1^st June 2012 was estimated to be 44.2 QALYs.

Conclusion

The short-term impact of measles infection on HRQoL is substantial, both at the level of the individual patient and in terms of the overall disease burden. This is the first attempt to quantify QALY-loss due to measles at a population level, and provides important parameters to guide future intervention and control measures.     

Health-Related Quality of Life in Patients with Nonfunctioning Pituitary Adenomas Undergoing Postoperative Radiation Therapy: A Case-Control Study

Objective: Nonfunctioning pituitary adenomas (NFPAs) can be associated with significant morbidity including a compromised quality of life (QoL). Radiotherapy (RT) is listed as one of the contributing factors to QoL impairment in these patients, however the evidence supporting this association is scarce and conflicting. Here we evaluate health-related QoL (HRQoL) impairment in patients with NFPA and to what extent this is due to RT.Methods: HRQoL was evaluated with the short form-36 questionnaire (SF-36), which explores 8 domains pertaining physical, emotional, and mental well being. We assessed 50 patients with NFPA subjected to RT after pituitary surgery, and their results were compared to those from 127 subjects who had undergone surgery but not RT. Both groups were matched for age, sex, and metabolic and cardiovascular comorbidities. The SF-36 was applied a median of 72 months after RT in the group of cases and 78 months after the last surgical procedure in the control group.Results: Both groups scored equally low in the 8 areas explored by the survey. In a multiple linear regression model, age was significantly associated with worse physical health scores, whereas female sex was associated with worse general health perception and lower emotional role and physical role scores. The presence of a visual field defect was significantly associated with a worse social role functioning score.Conclusion: QoL in patients with NFPAs is significantly compromised in most scales evaluated by the SF-36 survey. However, RT itself does not affect QoL.Abbreviations:CI = confidence intervalGH = growth hormoneHRQoL = health-related quality of lifeIQR = interquartile rangeNFPA = nonfunctioning pituitary adenomaQoL = quality of lifeRT = radiotherapySF-36 = short form 36-item health surveyTSS = transsphenoidal surgeryXRT = external beam radiotherapy     

Influence of Self-Reported Chronic Rhinosinusitis on Health-Related Quality of Life: A Population-Based Survey

Chronic rhinosinusitis (CRS) is a frequently occurring chronic respiratory disease. There is evidence that effective treatment of CRS can improve patients’ quality of life, but the data regarding the extent to which CRS impairs patients’ quality of life (QoL) is sparse. This study aimed to evaluate the effect of self-reported CRS on health-related QoL and to determine whether the influence was associated with gender, age and socio-economic status. A four-stage random sampling method was used to select the participants from the general population in Guangzhou, China. All participants were interviewed face-to-face at their homes using a standardized questionnaire. The health-related QoL of each participant was assessed using the SF-36 Health Survey. The scores of the SF-36 after adjusting for gender, age, socioeconomic conditions, smoking and some important comorbid conditions were compared between the CRS group and the non-CRS group using analysis of covariance. A multiple linear regression model with interaction terms was established to determine whether CRS affected QoL to the same degree across the different subpopulations. Among a total of 1,411 participants aged at least 15 years, 118 persons (8.4%) had self-reported CRS. Subjects with CRS had an increased prevalence of allergic rhinitis, chronic obstructive pulmonary disease and gout than subjects without CRS. The CRS group had lower scores in all eight domains and the physical and mental component summary than those without CRS (P<0.05), and the greatest differences were in role emotional function (RE), general health (GH) and role physical function (RP). The impairments of the CRS participants in RE and RP were greater among the females than the males. Moreover, physical domains were affected to greater degrees among the elderly and those with high-level education. In conclusion, CRS is a common chronic disorder. Persons with self-reported CRS perceived themselves as having impaired QoL in both the physical and mental domains. These findings shed new light on the health burden of CRS and should be taken into account by clinicians involved in the care of CRS patients.     

Associations of Lifestyle Factors,Disease History and Awareness with Health-Related Quality of Life in a Thai Population

Background

The impact of the presence and awareness of individual health states on quality of life (HRQoL) is often documented. However, the impacts of different health states have rarely been compared amongst each other, whilst quality of life data from Asia are relatively sparse. We examined and compared the effects of different health states on quality of life in a Thai population.

Methods

In 2008–2009, 5,915 corporate employees were invited to participate in a survey where HRQoL was measured by the Short Form 36 (SF-36) questionnaire. The adjusted mean SF-36 scores were calculated for each self-reported illness, number of chronic conditions, lifestyle factors and awareness of diabetes and hypertension. The effect sizes (ES) were compared using Cohen''s d.

Results

The response rate was 82% and 4,683 (79.1%) had complete data available for analysis. Physical and Mental Component Summary (PCS and MCS) scores decreased as the number of chronic conditions increased monotonically (p<0.0001). Diabetes and hypertension negatively influenced PCS (mean score differences −0.6 and −1.5, p<0.001 respectively) but not MCS, whereas awareness of diabetes and hypertension negatively influenced MCS (−2.9 and −1.6, p<0.005 respectively) but not PCS. Arthritis had the largest ES on PCS (−0.37), while awareness of diabetes had the largest ES on MCS (−0.36). CVD moderately affected PCS and MCS (ES −0.34 and −0.27 respectively). Obesity had a negative effect on PCS (ES −0.27). Exercise positively affected PCS and MCS (ES +0.08 and +0.21 (p<0.01) respectively).

Conclusion

Health promotion to reduce the prevalence of chronic diseases is important to improve the quality of life in Asian populations. Physical activity is an important part of such programs. Awareness of diseases may have greater impacts on mental health than having the disease itself. This has implications for the evaluation of the cost-benefit of screening and labeling of individuals with pre-disease states.     

Two Measures of Health-Related Quality of Life in Morbid Obesity

Objective: To compare health-related quality of life (HRQOL) measures in obese presurgery patients with and without binge-eating disorder (BED) and to investigate the relationship between a generic [short form-36 (SF-36)] and a disease-specific HRQOL measure [Impact of Weight on Quality of Life Questionnaire (IWQOL)] and measures of eating-related and general psychopathology. Research Methods and Procedures: One hundred ten patients ages 19 to 62 years with a mean body mass index of 48.4 ± 8.3 kg/m² who were evaluated for gastric bypass surgery were asked to fill out questionnaires assessing eating-related and general psychopathology (depression, self-esteem), as well as the two HRQOL questionnaires. BED was assessed by self-report. Results: Nineteen (17.3%) patients met criteria for BED. Significant differences between patients with and without BED were found for four of the eight subscales of the SF-36—with effect sizes ranging from 0.44 to 0.75—and for the total score and three of the five subscales of the IWQOL-Lite—with effect sizes from 0.57 to 0.74. The mental composite score of the SF-36 as well as the IWQOL total score correlated significantly with the measures of psychopathology. Discussion: This is the first study comparing the results of HRQOL measures in morbidly obese presurgery patients with and without BED. The results indicate that BED has a profound negative impact on HRQOL that exceeds the influence of obesity. Both HRQOL measures were able to reliably discriminate between patients with and without BED. Depression and self-esteem influenced HRQOL in a similar way as binge eating.     

Health-Related Quality of Life in Patients with Primary Cutaneous Amyloidosis

Background

Primary cutaneous amyloidosis (PCA) is a relatively rare and itchy skin disorder characterized by amyloid deposits in the superficial dermis. The cosmetic disfigurement and severe pruritus dramatically affects the patient’s quality of life. In spite of the prevalence of the disease in China, the quality of life (QoL) impact of the PCA has not been well defined and is the focus of this study.

Objective

To examine the HRQoL of patients with PCA and to evaluate the association between HRQoL scores, disease, and socio-demographic determinants.

Methods

A total of 104 PCA patients and 101 healthy participants completed the questionnaires. HRQoL was measured using dermatology life quality index (DLQI) and SF-36. The socio demographic and clinical data such as age, sex, duration of disease and distribution of lesion pattern were analyzed mainly by hierarchical multiple regression analyses.

Results

Patients with PCA experienced significantly impaired health-related quality of life. The mean DLQI score was 9.05. Younger age, female gender, more pruritus and distribution pattern were independent predictor correlates of the high DLQI scores. The PCA group showed significantly decreasing average scores in several aspects of psychological symptoms, including SF, RE and MH.

Conclusions

PCA disease has a negative impact on the HRQoL of patients, and the HRQoL is associated with various disease characteristics. In conjunction with medical interventions, psychological and sociocultural assessment and intervention should be an essential part of the management of these cases.     

Relationship between Obesity and Health-Related Quality of Life in Men

Objective: Few studies examining the relationship between obesity and health-related quality of life (HRQOL) have used a medical outpatient population or demonstrated a relationship in men. Furthermore, most studies have not adequately considered comorbid illness. The goal of this study was to examine the relationship between body mass index (BMI) and HRQOL in male outpatients while considering comorbid illness. Research Methods and Procedures: This cross-sectional study examined 1168 male outpatients from Durham Veterans’ Affairs Medical Center. Multiple linear regression was used to examine the relationship of BMI with each subscale from the Medical Outcomes Study Short Form 36 while adjusting for age, race, comorbid illness, depression, and physical activity. Results: Participants had a mean age of 54.7 ± 5.6 years; 69% were white and 29% were African American. The distribution for BMI was as follows: 18.5 to <25 kg/m² (21%), 25 to <30 kg/m² (43%), 30 to <35 kg/m² (25%), 35 to <40 kg/m² (8%), and ≥40 kg/m² (3%). Mean Short Form 36 subscale scores were lower than U.S. norms by an average of 27%. Individuals with BMI ≥40 kg/m² had significantly lower scores compared with normal weight individuals on the Role-Physical and Vitality subscales. On the Physical Functioning and Physical Component subscales, lower scores were observed at BMI ≥35 kg/m². On the Bodily Pain subscale, lower scores were observed at BMI ≥25 kg/m². Discussion: An inverse relationship between BMI and physical aspects of HRQOL exists in a population of male outpatients. Increased BMI was most prominently associated with bodily pain; this relationship should receive more attention in clinical care and research.     

Long Term Health-Related Quality of Life in Survivors of Sepsis in South West Wales: An Epidemiological Study

Introduction

Survivors of sepsis report persistent problems that can last years after hospital discharge. The main aim of this study was to investigate long-term health-related quality of life in survivors of SIRS and sepsis compared with Welsh normative data, controlling for age, length of stay and pre-existing conditions. The second aim was to investigate any differences in long-term health-related quality of life specifically with the patients categorised into three groups; SIRS, uncomplicated sepsis and severe sepsis/septic shock.

Methods

A prospective study design was used in order to investigate all sepsis patients either presenting to the Emergency Department or admitted to the Intensive Care Unit of a regional trauma centre. Baseline demographics, clinical characteristics and outcomes were collected and surviving patients were sent a SF-12v2 survey at between six months to two years post-hospital discharge.

Results

Quality of life was significantly reduced in all patients when compared to local normative data (all p<0.0001). Reductions in the physical components of health-related quality of life were more pronounced in severe sepsis/septic shock patients when compared to uncomplicated sepsis and SIRS patients, when controlling for age, pre-existing conditions, hospital and ICU length of stay.

Conclusions

This is the first observational study to specifically focus on the different groups of SIRS and sepsis patients to assess long-term quality of life. Local population norms were used for comparison, rather than UK-wide norms that fail to reflect the intricacies of a country’s population.     

Establishing the Thematic Framework for a Diabetes-Specific Health-Related Quality of Life Item Bank for Use in an English-Speaking Asian Population

Aims

To establish a thematic framework for a Diabetes Mellitus (DM)-specific health-related quality of life (HRQoL) item bank by identifying important HRQoL themes and content gaps in existing DM-specific HRQoL measures and determining whether Patient-Reported Outcomes Measurement Information System (PROMIS) item banks are useful as a starting point.

Methodology

English-speaking Type 2 DM patients were recruited from an outpatient specialist clinic in Singapore. Thematic analysis was performed through open coding and axial coding. Items from four existing DM-specific measures and PROMIS Version 1.0 and 2.0 item banks were compared with identified themes and sub-themes.

Results

42 patients participated (25 men and 17 women; 28 Chinese, 4 Malay, 8 Indians, 2 other ethnicities). Median age was 53.70 years (IQR45.82–56.97) and the median disease duration was 11.13 (SD9.77) years. 10 subthemes (neutral emotions, coping emotions, empowered to help others, support from family, spend more time with family, relationships, financial burden on family, improved relationship, social support and religion/spirituality) were not covered by existing DM-specific measures. PROMIS covered 5 of 6 themes, 15 of 30 subthemes and 19 of 35 codes identified. Emotional distress (frustration, fear and anxiety) was most frequently mentioned (200 times).

Conclusions

We had developed a thematic framework for assessing DM-specific HRQoL in a multi-ethnic Asian population, identified new items that needed to be written and confirmed that PROMIS was a useful starting point. We hope that better understanding and measurement of HRQoL of Asian DM patients will translate to better quality of care for them.