Development of the quality of life in epilepsy inventory

We developed an instrument to measure health-related quality of life (HRQOL) in epilepsy. A 99-item inventory was constructed from the RAND 36-Item Health Survey (generic core), with 9 additional generic items, 48 epilepsy-targeted items, and 6 other items concerning attitudes toward epilepsy and self-esteem. We administered the 99-item inventory to 304 adults with epilepsy at 25 epilepsy centers. Patients and patient-designated proxies completed the inventory and were retested 1-91 days later. A multitrait scaling analysis of these data led to retention of 86 items distributed in 17 multiitem scales (Cronbach's alpha ranged from 0.78 to 0.92). Factor analysis of the 17 multiitem scales yielded four underlying dimensions of health: an epilepsy-targeted dimension, a cognitive factor, mental health, and physical health. Construct validity was supported by significant patient-proxy correlations for all scales and correlations between neuropsychologic tests and self-reported emotional and cognitive function (all p values < 0.05). There were significant negative correlations between the four factor scores derived from the HRQOL scales and neurotoxicity, systemic toxicity, and health care utilization (except for the correlation between mental health factor and health care utilization; all p values < 0.05). Patients who were seizure-free in the preceding year reported better HRQOL for the overall score, three of the four factor scores, and 8 of the 17 scale scores than did patients with a high frequency of seizures. Relative validity analysis showed that the epilepsy-targeted factor and three of its four component scales were more sensitive to categorization of patients by severity of seizure frequency and type than scales tapping physical health, mental health, or cognitive function. These cross-sectional data support the reliability and validity of this measure of HRQOL in epilepsy. The addition of an epilepsy-targeted supplement to the generic core improved the sensitivity to severity of epilepsy. The 86 items included in the field testing were supplemented by three additional items to form the Quality of Life in Epilepsy (QOLIE-89) inventory.     

Quality of Life Scale: A preliminary analysis.

Compared the Quality of Life Scale (QOL) with 2 problem-oriented scales in 55 community mental health center clients (9–58 yrs old). Statistical analysis suggested that 3 factors account for a respectable degree of variance: People, Health, and Providing. These preliminary results suggest that the QOL scale represents a simple but potentially useful approach to assessing process and product in mental health delivery systems. (5 ref) (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The value of studies of quality of life in chronic respiratory tract diseases in the framework of holistic medicine

Quality of Life (QOL) is a new area of research evaluating the psychical, functional and psychological components of human life. According to current understanding of health issues the measurement of morbidity or mortality does not estimate the health status and describe the influence of illness on human life. The theoretical framework of Health Related Quality of Life is largely based on a multidimensional perspective of human as physical, psychological and social functioning and well-being, along the WHO definition of health. QOL assessment could be carried out using different psychological methods. There are several questionnaires developed to assess the quality of life in patients. The measurement instruments are generic (used in wide range of health related issues), domain specific (concerning some important outcome such as social support, coping), and disease specific which are used to assess patients with particular health problems. QOL assessment could be used as the measurements in pharmacoeconomics and clinical trials. Polish QOL Initiative Group produce Polish version of existing questionnaires--for example The Asthma Quality of Life Questionnaire was registered in Polish language version. Quality of Life researches facilitate doctors to understand patient's perceiving of the health state and help them to live a fulfilling life.     

Assessment of quality of life in a multicultural cancer patient population.

Quality of life (QOL) is increasingly assessed in cancer patients. In this article, the authors examined the psychometric performance of a commonly used QOL questionnaire, the Quality of Life Questionnaire--Cancer 30 (QLQ-C30; N. K. Aaronson et al., 1993), in multiethnic cancer patients. Content validation studies in patients and clinicians identified possible new items. Multiple-group confirmatory factor analysis supported equivalent structure across ethnic groups (Caucasians and Asian/Pacific Islanders [APIs]). A higher order QOL factor appeared to directly affect functioning scales and symptom count. Exploratory factor analysis examined effects of new items. Ten factors were extracted, 6 consistent with the original instrument and 4 reflecting potentially new aspects of QOL: Positive Social Support, Coping, Existential Well-Being, and Sexuality/Intimacy. The QLQ-C30 appears appropriate for use in API cancer patients. Further work needs to ensure that it includes all important domains. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Overview of health-related quality-of-life measures for pediatric patients: application in the assessment of pharmacotherapeutic and pharmacoeconomic outcomes

Health-related quality of life (HRQOL) is an important dimension in assessing health care. Several methodologic considerations are related to the manner in which these data are obtained in children. Few multidimensional generic measures of quality of life (QOL) have been developed for children and adolescents. Most published research concerns the development of tools to be used in a disease-specific manner for clinical trials. Although several authors point out numerous advantages in assessing HRQOL in clinical practice, several barriers must be overcome for this to occur. In the current era of economic restraint, HRQOL measures must be integrated into pharmaco-economic analyses to assess fully the impact of a drug on health care resources and outcomes.     

The Juvenile Arthritis Quality of Life Questionnaire--development of a new responsive index for juvenile rheumatoid arthritis and juvenile spondyloarthritides

OBJECTIVE: To develop a disease specific measure of quality of life for application in children with juvenile rheumatoid arthritis and juvenile spondyloarthritides-the Juvenile Arthritis Quality of Life Questionnaire (JAQQ). METHODS: Patients and their parents were interviewed by a trained interviewer using a questionnaire focusing on physical function, psychosocial function, and general symptoms to determine the most appropriate items to include in the JAQQ. Respondents volunteered items and scored them for frequency of occurrence and importance. Items so generated were scored by a panel of experts for potential responsiveness and categorized into dimensions. Item number was reduced using this scoring system. The product was then pretested to confirm its construct validity and responsiveness. Thereafter, it was distributed to clinical experts to establish face and content validity. RESULTS: 91 patients, mean age 10.35 years (range 1.25-18.0), mean disease duration 3.99 years, and their parents were included in the interview process. 220 items generated were ultimately reduced to 85. Pretesting this version of the instrument in a further 30 patients showed it to have construct validity and responsiveness and led to a further reduction in items to 74, distributed in 4 dimensions: gross motor function (17 items), fine motor function (16 items), psychosocial function (22 items), and general symptoms (19 items). Face and content validity were established in 20 clinicians. Scaling was by 7 point Likert scale to enhance responsiveness. English and French versions were developed. CONCLUSION: The JAQQ measures physical and psychosocial function and an array of general symptoms. Preliminary data suggest it is valid and responsive and thus might have potential in clinical trials.     

The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity

BACKGROUND: Multidimensional measurement of pediatric cancer patients' health-related quality of life (HRQOL) in Phase III randomized controlled clinical trials is being recognized increasingly as an essential component in evaluating the comprehensive health outcomes of modern antineoplastic treatment protocols. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32) is a standardized patient self-report and parent proxy-report assessment instrument designed to assess systematically pediatric cancer patients' HRQOL outcomes. METHODS: To validate a patient-report form and a parent-report form, the PCQL-32 was administered to 291 pediatric cancer patients and to their parents. Both forms yield a total score and five a priori multidimensional scales. Clinical validity was determined by the known-groups approach by comparing patients classified as either on or off treatment. To determine construct validity, a battery of standardized psychosocial measures was administered and a multitrait-multimethod matrix was constructed. RESULTS: For both patient and parent forms, internal consistency reliability of the PCQL-32 total scale was high (0.91 and 0.92, respectively). The internal consistency reliabilities of the five component scales for both patient and parent forms were in the acceptable range for group comparisons. With regard to clinical validity, the PCQL-32 total scale and the disease/treatment and physical functioning scales of the PCQL-32 distinguished between patients on and off treatment for both patient- and parent-report. The results of the multitrait-multimethod matrix approach were consistent with hypotheses and lent evidence for the construct validity of the patient and parent forms of the PCQL-32 total scale and the psychological functioning, social functioning, cognitive functioning, physical functioning, and disease/treatment scales. CONCLUSIONS: The PCQL-32 has demonstrated acceptable internal consistency reliability, clinical validity, and construct validity for both patient-report and parent-report forms. Further field testing of the PCQL-32 will determine its practicality and utility in multisite pediatric cancer randomized controlled clinical trials.     

Suppression of crossing-over by DNA methylation in Ascobolus

Interpretation of health related quality of life (HRQOL) results in cancer patients is facilitated by knowledge of the levels of HRQOL in the general population. However, direct comparisons can be misleading unless age and gender are considered. We demonstrate the derivation of age- and gender-specific 'expected' values from population reference values by means of simple calculations. This survey included 3000 randomly selected Norwegians above 18 years of age who received the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30 (+3) by mail. 1965 responses from 2,892 eligible persons (68%) were received. The population was divided into six disease groups based on self-reported health problems. The observed mean scale scores of the different groups deviated greatly from those obtained in the general population. The score for physical function, for example, was 72 for cancer patients and ranged from 73.3 to 82.5 in other disease groups, as opposed to 89.9 in the general population and 98.9 in those with no health problems. The range for one of the quality of life (QOL) scales was 57.7 to 84.7 compared with 73.7 in the general population. Expected mean scores for the patient groups were computed from the reference values, based on the concept of equivalence of age and gender. The differences between the observed mean scores and the reference values were strongly mediated by this method. The expected scores for physical function then ranged from 83.3 to 93.1 and from 70.3 to 75 for the QOL scale. The impact of age and gender on the reference data from the EORTC QLQ-C30 (+3) obtained in a general population shows that these variables must be considered when interpreting data on HRQOL for cancer patients. The demonstration of how to generate mean values which are adjusted according to the age and gender distribution of a population should increase the usefulness of this questionnaire among clinicians.     

Development and validation of the Pediatric Oncology Quality of Life Scale.

This study describes the development of a 21-item, parent report measure for assessing the quality of life (QOL) of children with cancer. The Pediatric Oncology Quality of Life Scale (POQOLS) provides a total score and three factor scores that assess physical function and role restriction, emotional distress, and reaction to current medical treatment. Internal consistency reliabilities of the total scale and the three factors were high, as was interparent agreement. In addition, POQOLS scores demonstrated good concurrent and discriminant relationships with scores on measures of adjustment hypothesized to covary with the dimensions of QOL assessed. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Mg2+ and ATP dependence of K(ATP) channel modulator binding to the recombinant sulphonylurea receptor, SUR2B

PURPOSE/OBJECTIVES: To explore gender differences and similarities in the dimensions of quality of life (QOL). DESIGN: Secondary analysis of the Multidimensional Quality of Life Scale--Cancer Version (MQOLS--CA) data from two different research studies. SETTINGS: Multiple outpatient oncology sites. SAMPLE: The typical female participant (n = 254) was 58 years old (SD +/- 11.3) with 14 years of education, married/partnered (64%), Caucasian (88%), and diagnosed with breast (47%) or colorectal (16%) cancer. The typical male participant (n = 222) was 60 years old (SD +/- 14) with 14.3 years of education, married/partnered (69%), Caucasian (85%), and diagnosed with colorectal (31%) or prostate (13%) cancer. METHODS: Factor analytic procedures and reliability testing. MAIN RESEARCH VARIABLES: QOL as measured by the MQOLS-CA, gender. FINDINGS: For women, two factors emerged from the analysis procedures-psychosocial well-being (7 items) and physical competence (6 items). For the men, two different factors emerged--vitality (8 items) and personal resources (4 items). None of the cancer-specific items from the MQOLS-CA loaded on any of the factors for either gender. CONCLUSIONS: Measurement of QOL requires gender-specific questions to accurately address the dimensions of the concept of QOL in females and males. IMPLICATIONS FOR NURSING PRACTICE: Additional research is warranted to replicate these findings. Gender-specific interventions could then be developed and tested to maximize the QOL of all patients.     

Lung cancer and quality of life

Quality of life (QOL) is frequently used as an endpoint of measurement in cancer treatment. Compared to other cancers, there are only a few reports of QOL in the treatment of lung cancer. Several QOL instruments have been developed and this paper reports experience with the functional Living-Index-Cancer and Quality of Life Index tools in Lung Cancer treatment, in a randomised controlled trial of chemotherapy.     

Development and application of new scales to measure the French and Raven (1959) bases of social power.

Presented are results from a multistep, three-sample study that designed measures of reward, coercive, legitimate, expert, and referent power that are conceptually consistent with respect to the source of power. Construct definitions were developed and items were generated and evaluated for content validity. Exploratory and confirmatory factor analyses and item analyses were conducted to develop perceptually distinct scales with acceptable internal consistency and stable factor structures. The independence of the scales was next examined, and discriminant validity was assessed. Finally, zero-order and partial correlation concurrent validity analyses were conducted, and conclusions were drawn concerning both new scales and the extant literature. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Measurement properties of a self-administered outcome measure in lumbar spinal stenosis

STUDY DESIGN: The measurement properties and validity of a newly developed patient questionnaire for the assessment of patients with lumbar spinal stenosis was tested in an ongoing prospective multicenter observational study of patients undergoing decompressive surgery in three teaching hospitals. OBJECTIVE: The goal of the study was to develop a short, self-administered questionnaire on symptom severity, physical functional status, and patient satisfaction. SUMMARY OF BACKGROUND DATA: The measure is intended to complement existing generic measures of spinal-related disability and health status. The questionnaire includes three scales with seven questions on symptom severity, five on physical function, and six on satisfaction. METHODS: The internal consistency of the scales was assessed with Cronbach's coefficient alpha on cross-sectional data from 193 patients before surgery. The test-retest reliability was assessed on data from a random sample of 23 patients using Spearman's rank correlation coefficient. The responsiveness was assessed on 130 patients with 6-month follow-up data using the standardized response mean. RESULTS: The test-retest reliability of the scales ranged from 0.82 to 0.96, the internal consistency from 0.64 to 0.92, and the responsiveness from 0.96 to 1.07. The direction, statistical significance, and strength of hypothesized relationships with external criteria were as expected. CONCLUSIONS: This short self-administered spinal stenosis measure is reproducible, internally consistent, valid, and highly responsive. It can be used to complement generic instruments in outcome assessment of patients with lumbar spinal stenosis.     

Measuring disability, the agreement between self evaluation and observation of performance

PURPOSE: In 1981, eight countries and the World Health Organization (WHO) reached consensus about applying a similar disability questionnaire in their health surveys that was related to the ICIDH. In 1992 a revised version, the WHO-disability questionnaire, was recommended. In this paper the concurrent validity of 10 items of the questionnaire is evaluated by measuring the agreement with observed performance of corresponding tasks. METHOD: The disability questionnaire was sent to 750 subjects. From the respondents (468) 93 were selected, based on their reported disability, and 10 performance tasks were observed. The agreement was measured for individual items and for all items together in distinguishing between persons with no, or at least one disability. RESULTS: A low to moderate agreement was found between self reported and observed disability. In general, observation resulted in lower disability ratings. Among 24% of those who reported at least one disability, no disability was observed. Persons among whom at least one disability was observed, only 2% (n = 1) reported no disability in the questionnaire. CONCLUSIONS: Although the concurrent validity is low to moderate between the results of the WHO-disability questionnaire and observation, the questionnaire is highly sensitive for detecting persons with at least one disability. The specificity of the questionnaire must be increased by additional questions.     

The POSNA pediatric musculoskeletal functional health questionnaire: report on reliability, validity, and sensitivity to change. Pediatric Outcomes Instrument Development Group. Pediatric Orthopaedic Society of North America

The goal of orthopaedic interventions is to improve the functional health of patients, particularly physical function. The American Academy of Orthopaedic Surgeons and the Pediatric Orthopaedic Society of North America (POSNA) commissioned a work group to construct functional health outcomes scales for children and adolescents, focusing on musculoskeletal health. The work group developed scales assessing upper extremity function, transfers and mobility, physical function and sports, comfort (pain free), happiness and satisfaction, and expectations for treatment. Parent and adolescent self-report forms were developed and tested on 470 subjects aged 2-18 years. The POSNA scales demonstrated good reliability, construct validity, sensitivity to change over a 9-month period, and ability to outperform a standard instrument, the Child Health Questionnaire physical functioning scale. They were useful for a wide variety of ages and diagnoses. They appear to be ideally suited for orthopaedic surgeons to assess the functional health and efficacy of treatment of their patients at baseline and follow-up.     

The EORTC core quality of life questionnaire (QLQ-C30): validity and reliability when analysed with patients treated with palliative radiotherapy

The EORTC Core Quality of Life questionnaire (EORTC QLQ-C30) is designed to measure cancer patients' physical, psychological and social functions. The questionnaire is composed of multi-item scales and single items. 247 patients completed the EORTC QLQ-C30 before palliative radiotherapy and 181 after palliative radiotherapy. The questionnaire was well accepted with a high completion rate in the present patient population consisting of advanced cancer patients with short life expectancy. In addition, the questionnaire was found to be useful to detect the effect of palliative radiotherapy over time. The scale reliability was excellent for all scales except the role functioning scale. Excellent criterion validity was found for the emotional functioning scale where it was correlated with GHQ-20. Performance of the questionnaire was improved after the second evaluation as compared with the first. The present study shows that the EORTC QLQ-C30 is found to be practical and valid in measuring quality of life in patients with advanced disease.     

A symptom-based measure of the severity of chronic lung disease: results from the Veterans Health Study

STUDY OBJECTIVES: We developed a symptom-based measure of severity for chronic lung disease (CLD) that can be readily administered in ambulatory care settings and be used to supplement general health-related quality of life (HRQoL) assessments and pathophysiologic indicators in research and clinical care. DESIGN: Cross-sectional data from the Veterans Health Study, an observational study of health outcomes in patients receiving Veterans Affairs (VA) ambulatory care. SETTING: Four VA outpatient clinics. STUDY SUBJECTS: Two hundred ninety-two participants with CLD were identified on the basis of patient report of having a physician's diagnosis of chronic bronchitis, emphysema, or asthma and either using inhaled medications or having a productive cough on most days for 3 months. MEASUREMENTS AND RESULTS: Participants were scheduled for an in-person interview in which they completed a CLD questionnaire and measurements of peak expiratory flow rate (PEFR). They were also mailed an HRQoL questionnaire, the Short Form Health Survey (SF-36). The CLD questionnaire included six symptom items chosen by an expert panel (two items each for dyspnea, wheezing, and productive cough). The combination of these items yielded a CLD severity index that correlated significantly with all eight scales of the SF-36 (range of r, -0.19 to -0.37; p<0.01). In contrast, PEFR had statistically significant correlations only with two SF-36 scales: physical functioning and bodily pain. CONCLUSIONS: The CLD severity index is a reliable and valid patient-administered instrument that may be used to evaluate the effects of CLD on general HRQoL and predict future health services utilization.     

Development of quality of life questionnaire for patients with colorectal cancer in surgical area--a study of reliability and validity of Tokyo Yamabuki Forum Version

We developed a new questionnaire in the surgical area based on a core quality of life (QOL) questionnaire for patients with gastrointestinal cancer. In this study, we investigated the validity and reliability of a QOL questionnaire (Tokyo Yamabuki Forum Version) for patients with colorectal cancer. The questionnaire was composed of 17 items including 5 scales (basic sensory scale, psychological scale, physiological scale, defection-related scale and active scale) and a face scale as an global scale. The time needed to answer questionnaires was expected to be around 7 minutes and the questionnaires should basically be answered by the patients themselves everyday in the hospital. The study was performed in 10 hospitals in the Tokyo area, and 394 samples collected from 21 patients with rectal and colonic cancers were analyzed. A number of respondents failed to answer the question "Do you feel your foods tasty?", so we judged this item inappropriate and deleted it from the analysis. Fifteen items, including 5 scales showed satisfactory internal consistency and construct validity in correlation and factor analyses. Performance status showed a low correlation between each item, each scale and the global scale, while SDS and STAI showed an inordinately negative correlation with the fundamental and physical scales. Especially, SDS revealed an extremely close correlation with the active scale, and STAI showed an excessive correlation with the psychological scale. In the time course of QOL under chemotherapy, reductions (aggravations) were observed in both the total score of 15 items and global scale within one week postoperatively, but after that recovered to preoperative levels at 2 weeks postoperatively. A tendency to QOL improvement was observed 2 weeks after starting chemotherapy or chemoimmunotherapy. QOL of 13 patients was measured over 3 months, and the longest term was 8 months. The results suggested that this QOL questionnaire has sufficient reliability and validity to be usable for patients with colorectal cancer in the surgical area and that this model is applicable for long-term QOL surveys and frequent measurement.     

Health-related quality of life after epilepsy surgery: a Swedish multicenter study

PURPOSE: To investigate health-related quality of life (HRQOL) in relation to seizure outcome as part of a multicenter follow-up of epilepsy surgery in Sweden. METHODS: A battery including the SF-36 Health Survey and the Hospital Anxiety and Depression scale (HAD) was distributed to all patients older than 16 years. Mean follow-up time was 4 years (range, 2-13 years) and response rate, 91% (103 of 113 patients). HRQOL data were related to seizure frequency and severity (Chalfont Seizure Severity Scale). RESULTS: Seventy-six percent considered their global health to be better than it was before surgery. Degree of improvement in seizure control correlated with improved satisfaction with health (Spearman's r = 0.44). Higher SF-36 scores (higher HRQOL ratings) correlated with percentage reduction of seizure frequency for all scales and was strongest for perception of general health (Spearman's r = 0.46). When the patients were divided into four categories [A, completely seizure free (n = 29); B, seizure free with aura (n = 18); C, > or =75% reduction in seizure frequency (n = 24); and D, <75% reduction in seizure frequency (n = 32)], a strong positive association was found between higher SF-36 scores (with the exception of physical functioning) and better seizure control. Health-related limitations in role performance differentiated best between the outcome categories. For patients with > or =75% reduction in seizure frequency, low seizure severity correlated with higher HRQOL ratings for scales measuring social function, vitality, and mental health. Depression levels (HAD scale scores) were on average low. Anxiety (HAD) increased significantly from A to D. CONCLUSIONS: HRQOL seems to be scored as a continuum in relation to seizure frequency. Seizure severity measures give complementary information.