Health-related quality of life in small-cell lung cancer: a systematic review on reporting of methods and clinical issues in randomised controlled trials.

Small-cell lung cancer represents about 15% of all lung cancers; increasingly, randomised controlled trials of this disease measure the health-related quality of life of patients. In this Systematic Review we assess the adequacy of reporting of health-related quality-of-life methods in randomised controlled trials of small-cell lung cancer, and the potential effect of this reporting on clinical decision making. Although overall reporting of health-related quality of life was acceptable, improvements are needed to optimise the use of health-related quality of life in randomised controlled trials.

Psychosocial, educational, and somatic factors in chronic nonspecific low back pain.

Analysis of the effect of psychosocial factors and co-morbidities on the health status of patients with chronic nonspecific low back pain and patients with surgical intervention because of disk herniation was performed. One hundred and two nonselected consecutive inpatients with chronic nonspecific low back pain were included in the study. Their average age was 56.7 (SD = 10.9) years. The control group consisted of 199 subjects matched according to age and sex, chosen from the database of the national representative health survey Hungarostudy 2006, which involved 4,527 subjects. We measured quality of life including mental health with the SF-36 questionnaire validated for use in Hungary, the short 9-item version of the Beck Depression Inventory, the WHO-Five Well-Being Index, and the Hospital Anxiety-Depression Scale. We characterized the socio-demographic status with variables on age, sex, marital status, and education. Data on symptoms and signs of low back pain, other musculoskeletal diseases, and their treatments including spinal surgery were recorded. Co-morbidity and body mass index were considered as independent indicators of health. Depression as measured by Beck Depression Inventory and severity of depression did not vary significantly according to marital status, education, hypertension, diabetes, and gastrointestinal disease. Only half of the patients (52 %) were in the normal range of the scale; 22 % suffered from mild, 16 % from moderate, and 12 % from severe depression. Average values for anxiety and depression as measured by Hospital Anxiety-Depression Scale and Beck Depression Inventory were both significantly higher in the patient than in the control group (Hospital Anxiety Scale: p = 0.0001; Beck Depression Inventory: p = 0.0001). According to the WHO Well-Being Index-5 scale, the difference between patients and the control group was significant (p = 0.0001). Furthermore, correlation was found between the incidence of depression and surgery. Depression was demonstrated in 47.4 % of those patients who had no surgery, in 50 % of patients who had one round of surgery, and in 62.5 % of those who had undergone surgery more than once; the contingence coefficient was 0.211. According to different measurements, the psychological state of patients with chronic nonspecific low back pain was significantly altered as compared to the matched Hungarian population. Higher anxiety and depression markers occurred in 48 % of the patients. There was no correlation between the depression of patients with low back pain and variables such as marital status, education, and co-morbidities. Our study is the first to demonstrate that depression runs parallel with the number of surgical procedures. Therefore, if there is a relative indication for surgery, depression and severity of depression should be assessed and considered when deciding on the intervention.

Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents' well-being and health-related quality of life.

BACKGROUND: To assess the criterion and construct validity of the KIDSCREEN-10 well-being and health-related quality of life (HRQoL) score, a short version of the KIDSCREEN-52 and KIDSCREEN-27 instruments. METHODS: The child self-report and parent report versions of the KIDSCREEN-10 were tested in a sample of 22,830 European children and adolescents aged 8-18 and their parents (n = 16,237). Correlation with the KIDSCREEN-52 and associations with other generic HRQoL measures, physical and mental health, and socioeconomic status were examined. Score differences by age, gender, and country were investigated. RESULTS: Correlations between the 10-item KIDSCREEN score and KIDSCREEN-52 scales ranged from r = 0.24 to 0.72 (r = 0.27-0.72) for the self-report version (proxy-report version). Coefficients below r = 0.5 were observed for the KIDSCREEN-52 dimensions Financial Resources and Being Bullied only. Cronbach alpha was 0.82 (0.78), test-retest reliability was ICC = 0.70 (0.67) for the self- (proxy-)report version. Correlations between other children self-completed HRQoL questionnaires and KIDSCREEN-10 ranged from r = 0.43 to r = 0.63 for the KIDSCREEN children self-report and r = 0.22-0.40 for the KIDSCREEN parent proxy report. Known group differences in HRQoL between physically/mentally healthy and ill children were observed in the KIDSCREEN-10 self and proxy scores. Associations with self-reported psychosomatic complaints were r = -0.52 (-0.36) for the KIDSCREEN-10 self-report (proxy-report). Statistically significant differences in KIDSCREEN-10 self and proxy scores were found by socioeconomic status, age, and gender. CONCLUSIONS: Our results indicate that the KIDSCREEN-10 provides a valid measure of a general HRQoL factor in children and adolescents, but the instrument does not represent well most of the single dimensions of the original KIDSCREEN-52. Test-retest reliability was slightly below a priori defined thresholds.

The KIDSCREEN-52 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries.

OBJECTIVE: This study assesses the reliability and validity of the European KIDSCREEN-52 generic health-related quality of life (HRQoL) questionnaire for children and adolescents. RESEARCH DESIGN: The KIDSCREEN-52, which measures HRQoL in 10 dimensions, was administered to a representative sample of 22,827 children and adolescents (8 to 18 years) in 13 European countries. Psychometric properties were assessed using the Classical Test Theory approach, Rasch analysis, and structural equation modeling (SEM). A priori expected associations between KIDSCREEN scales and sociodemographic and health-related factors were examined. Test-retest reliability was assessed in 10 countries. RESULTS: For the overall sample, Cronbach's alpha values ranged from 0.77 to 0.89. Scaling success (Multitrait Analysis Program) was >97.8% for all dimensions and Rasch analysis item fit (INFITmsq) ranged from 0.80 to 1.27. The intraclass correlation coefficients ranged from 0.56 to 0.77. No sizeable differential item functioning (DIF) was found by age, sex or health status. Four items showed DIF across countries. The specified SEM fitted the data well (root mean square error of approximation: 0.06, comparative fit index: 0.98). Correlation coefficients between Pediatric Quality of Life Inventory, Child Health and Illness Profile-Adolescent Edition, and Youth Quality of Life Instrument scales and KIDSCREEN dimensions assessing similar constructs were moderate for those (r = 0.44 to 0.61). Statistically significant differences between children with and without physical and mental health problems (Children with Special Health Care Needs screener: d = 0.17 to 0.42, Strengths and Difficulties Questionnaire: d = 0.32 to 0.72) were found in all dimensions. All dimensions showed a gradient according to socioeconomic status. CONCLUSIONS: The KIDSCREEN-52 questionnaire has acceptable levels of reliability and validity. Further work is needed to assess longitudinal validity and sensitivity to change.

When a parent has cancer: challenges to patients, their families and health providers.

At least 14% of cancer patients live with minor children. Being a parent with cancer has far-reaching consequences for individual treatment decision-making and quality of life in patients and their families. Even though the majority of children and adolescents do not show clinically relevant symptoms of psychopathology, worries about the survival of the parent and the future development of the family are present, and experienced as distressing, in most children. Open communication by parents and clinicians has been found to be of major importance for children and adolescents in adjusting to parental cancer. Support for parents with cancer on relevant parenting issues, starting in the diagnostic phase, should be acknowledged as an important facet of cancer care to reduce the psychosocial burden for cancer patients and their families.

Testing the structural and cross-cultural validity of the KIDSCREEN-27 quality of life questionnaire.

OBJECTIVES: The aim of this study is to assess the structural and cross-cultural validity of the KIDSCREEN-27 questionnaire. METHODS: The 27-item version of the KIDSCREEN instrument was derived from a longer 52-item version and was administered to young people aged 8-18 years in 13 European countries in a cross-sectional survey. Structural and cross-cultural validity were tested using multitrait multi-item analysis, exploratory and confirmatory factor analysis, and Rasch analyses. Zumbo's logistic regression method was applied to assess differential item functioning (DIF) across countries. Reliability was assessed using Cronbach's alpha. RESULTS: Responses were obtained from n = 22,827 respondents (response rate 68.9%). For the combined sample from all countries, exploratory factor analysis with procrustean rotations revealed a five-factor structure which explained 56.9% of the variance. Confirmatory factor analysis indicated an acceptable model fit (RMSEA = 0.068, CFI = 0.960). The unidimensionality of all dimensions was confirmed (INFIT: 0.81-1.15). Differential item functioning (DIF) results across the 13 countries showed that 5 items presented uniform DIF whereas 10 displayed non-uniform DIF. Reliability was acceptable (Cronbach's alpha = 0.78-0.84 for individual dimensions). CONCLUSIONS: There was substantial evidence for the cross-cultural equivalence of the KIDSCREEN-27 across the countries studied and the factor structure was highly replicable in individual countries. Further research is needed to correct scores based on DIF results. The KIDSCREEN-27 is a new short and promising tool for use in clinical and epidemiological studies.

The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries.

OBJECTIVE: To assess the construct and criterion validity of the KIDSCREEN-27 health-related quality of life (HRQoL) questionnaire, a shorter version of the KIDSCREEN-52. METHODS: The five-dimensional KIDSCREEN-27 was tested in a sample of 22,827. For criterion validity the correlation with and the percentage explained variance of the scores of the KIDSCREEN-52 instrument were examined. Construct validity was assessed by testing a priori expected associations with other generic HRQoL measures (YQOL-S, PedsQL, CHIP), indicators of physical and mental health, and socioeconomic status. Age and gender differences were investigated. RESULTS: Correlation with corresponding scales of the KIDSCREEN-52 ranged from r = 0.63 to r = 0.96, and r2 ranged from 0.39 to 0.92. Correlations between other HRQoL questionnaires and KIDSCREEN-27 dimensions were moderate to high for those assessing similar constructs (r = 0.36 to 0.63). Statistically significant and sizeable differences between physically and mentally healthy and ill children were found in all KIDSCREEN-27 dimensions together with strong associations with psychosomatic complaints (r = -0.52). Most of the KIDSCREEN-27 dimensions showed a gradient according to socio-economic status, age and gender. CONCLUSIONS: The KIDSCREEN-27 seems to be a valid measure of HRQoL in children and adolescents. Further research is needed to assess longitudinal validity and sensitivity to change.

KIDSCREEN-52 quality-of-life measure for children and adolescents.

This study describes the development and reports the first psychometric results of the European KIDSCREEN-52 generic health-related quality-of-life questionnaire for children and adolescents. The KIDSCREEN-52, including ten dimensions, was applied in a European survey involving 12 countries (i.e., Austria, Switzerland, Czech Republic, Germany, Greece, Spain, France, Hungary, The Netherlands, Poland, Sweden and the UK) and 22,110 children and adolescents aged between 8 and 18 years of age. Questionnaire development included a literature search, expert consultation, and focus group discussions with children and adolescents. After definition of dimensions and collection of items, a translation process following international translation guidelines, cognitive interviews and a pilot test were performed. Analysis regarding psychometric properties showed Cronbach-alpha ranged from 0.77 to 0.89. Correlation coefficients between KINDL(R) and KIDSCREEN-52 dimensions were high for those assessing similar constructs (r = 0.51-0.68). All KIDSCREEN-52 dimensions showed a gradient according to socioeconomic status and most dimensions showed a gradient according to psychosomatic health complaints. The first results demonstrate that the KIDSCREEN-52 questionnaire is a promising cross-cultural measure of health-related quality-of-life assessment for children and adolescents in Europe.