Modernizing quality of life assessment: development of a multidimensional computerized adaptive questionnaire for patients with schizophrenia

Objective

Quality of life (QoL) is still assessed using paper-based and fixed-length questionnaires, which is one reason why QoL measurements have not been routinely implemented in clinical practice. Providing new QoL measures that combine computer technology with modern measurement theory may enhance their clinical use. The aim of this study was to develop a QoL multidimensional computerized adaptive test (MCAT), the SQoL-MCAT, from the fixed-length SQoL questionnaire for patients with schizophrenia.

Methods

In this multicentre cross-sectional study, we collected sociodemographic information, clinical characteristics (i.e., duration of illness, the PANSS, and the Calgary Depression Scale), and quality of life (i.e., SQoL). The development of the SQoL-CAT was divided into three stages: (1) multidimensional item response theory (MIRT) analysis, (2) multidimensional computerized adaptive test (MCAT) simulations with analyses of accuracy and precision, and (3) external validity.

Results

Five hundred and seventeen patients participated in this study. The MIRT analysis found that all items displayed good fit with the multidimensional graded response model, with satisfactory reliability for each dimension. The SQoL-MCAT was 39% shorter than the fixed-length SQoL questionnaire and had satisfactory accuracy (levels of correlation >0.9) and precision (standard error of measurement <0.55 and root mean square error <0.3). External validity was confirmed via correlations between the SQoL-MCAT dimension scores and symptomatology scores.

Conclusion

The SQoL-MCAT is the first computerized adaptive QoL questionnaire for patients with schizophrenia. Tailored for patient characteristics and significantly shorter than the paper-based version, the SQoL-MCAT may improve the feasibility of assessing QoL in clinical practice.

     

Validation of a computer-adaptive test to evaluate generic health-related quality of life

Background  

Health Related Quality of Life (HRQoL) is a relevant variable in the evaluation of health outcomes. Questionnaires based on Classical Test Theory typically require a large number of items to evaluate HRQoL. Computer Adaptive Testing (CAT) can be used to reduce tests length while maintaining and, in some cases, improving accuracy. This study aimed at validating a CAT based on Item Response Theory (IRT) for evaluation of generic HRQoL: the CAT-Health instrument.     

Items and dimensions for the construction of a multidimensional computerized adaptive test to measure fatigue in patients with rheumatoid arthritis

ObjectivesDevelopment of an item pool to construct a future computerized adaptive test (CAT) for fatigue in rheumatoid arthritis (RA). The item pool was based on the patients' perspective and examined for face and content validity previously. This study assessed the fit of the items with seven predefined dimensions and examined the item pool's dimensionality structure in statistical terms.Study Design and SettingA total of 551 patients with RA participated in this study. Several steps were conducted to come from an explorative item pool to a psychometrically sound item bank. The item response theory (IRT) analysis using the generalized partial credit model was conducted for each of the seven predefined dimensions. Poorly fitting items were removed. Finally, the best possible multidimensional IRT (MIRT) model for the data was identified.ResultsIn IRT analysis, 49 items showed insufficient item characteristics. Items with a discriminative ability below 0.60 and/or model misfit effect sizes greater than 0.10 were removed. Factor analysis on the 196 remaining items revealed three dimensions, namely severity, impact, and variability of fatigue. The dimensions were further confirmed in MIRT model analysis.ConclusionThis study provided an initially calibrated item bank and showed which dimensions and items can be used for the development of a multidimensional CAT for fatigue in RA.     

欧洲五维健康量表(EQ-5D)中文版应用介绍

  目的  了解上海市老年人健康相关生命质量及其影响因素,为提高老年人生存质量提供参考依据。  方法  收集上海市2013年第五次国家卫生服务调查数据,对上海市17个区县11 103名老年人的健康相关生命质量及其影响因素进行分析。  结果  上海市11 103名老年人中,欧洲五维健康量表（EQ-5D）健康描述系统行动能力、自我照顾能力、日常活动能力、疼痛或不舒服、焦虑或抑郁5个维度均没有任何困难者8 136人（73.28 %）,有极度困难者16人（0.14 %）。上海市老年人EQ-5D量表视觉模拟标尺（EQ-VAS）得分为0～100分,25 %分位数为70分,中位数为80分,75%分位数为85分。多因素分位数回归分析结果显示,婚姻状况已婚和丧偶、每天吸烟、饮酒 ≥ 1次/周、体育锻炼 ≥ 1次/周和1年内进行健康体检的EQ-VAS得分Q₅老年人得分较高,年龄 ≥ 70岁和患慢性病的EQ-VAS得分Q₅老年人得分较低;婚姻状况已婚和丧偶、饮酒 ≥ 1次/周、体育锻炼 ≥ 1次/周和1年内进行健康体检的EQ-VAS得分Q₂₅老年人得分较高,农业户口、年龄 ≥ 70岁、患慢性病和体育锻炼 < 1次/周的EQ-VAS得分Q₂₅老年人得分较低;女性、饮酒 ≥ 1次/周和体育锻炼 ≥ 3次/周的EQ-VAS得分Q₅₀老年人得分较高,年龄 ≥ 70岁和患慢性病的EQ-VAS得分Q₅₀老年人得分较低;婚姻状况已婚、离异和丧偶的EQ-VAS得分Q₇₅老年人得分较高,年龄 ≥ 70岁和患慢性病的EQ-VAS得分Q₇₅老年人得分较低;农业户口和患慢性病的EQ-VAS得分Q₉₅老年人得分较低。  结论  上海市老年人健康相关生命质量较好,户籍类型、年龄、婚姻状况、是否患慢性病、吸烟情况、饮酒情况、体育锻炼和1年内是否进行健康体检是该地区老年人健康相关生命质量的主要影响因素。     

A systematic review of studies measuring health-related quality of life of general injury populations

Background  

It is important to obtain greater insight into health-related quality of life (HRQL) of injury patients in order to document people's pathways to recovery and to quantify the impact of injury on population health over time. We performed a systematic review of studies measuring HRQL in general injury populations with a generic health state measure to summarize existing knowledge.     

Psychometric evaluation of the EORTC computerized adaptive test (CAT) fatigue item pool

Purpose

Fatigue is one of the most common symptoms associated with cancer and its treatment. To obtain a more precise and flexible measure of fatigue, the EORTC Quality of Life Group has developed a computerized adaptive test (CAT) measure of fatigue. This is part of an ongoing project developing a CAT version of the widely used EORTC QLQ-C30 questionnaire.

Methods

Based on the literature search and evaluations by experts and patients, 41 new fatigue items were developed (in addition to the three QLQ-C30 fatigue items). Psychometric properties of the items, including evaluations of dimensionality, fit to item response theory (IRT) model, and differential item functioning (DIF), were assessed in an international sample of cancer patients.

Results

Responses were obtained from 1,321 cancer patients coming from eight countries. Factor analysis showed that 37 of the items could be included in a unidimensional model (RMSEA = 0.098, TLI = 0.995, CFI = 0.920). Of the 37 items, two were deleted because of poor fit to the IRT model forming the basis for the CAT, and one because of DIF between cancer sites.

Conclusions

We have established a 34-item fatigue bank allowing for more precise and flexible measurement of fatigue, while still being backward compatible with the QLQ-C30 fatigue scale.     

Replenishing a computerized adaptive test of patient-reported daily activity functioning

Purpose  Computerized adaptive testing (CAT) item banks may need to be updated, but before new items can be added, they must be linked to the previous CAT. The purpose of this study was to evaluate 41 pretest items prior to including them into an operational CAT. Methods  We recruited 6,882 patients with spine, lower extremity, upper extremity, and nonorthopedic impairments who received outpatient rehabilitation in one of 147 clinics across 13 states of the USA. Forty-one new Daily Activity (DA) items were administered along with the Activity Measure for Post-Acute Care Daily Activity CAT (DA-CAT-1) in five separate waves. We compared the scoring consistency with the full item bank, test information function (TIF), person standard errors (SEs), and content range of the DA-CAT-1 to the new CAT (DA-CAT-2) with the pretest items by real data simulations. Results  We retained 29 of the 41 pretest items. Scores from the DA-CAT-2 were more consistent (ICC = 0.90 versus 0.96) than DA-CAT-1 when compared with the full item bank. TIF and person SEs were improved for persons with higher levels of DA functioning, and ceiling effects were reduced from 16.1% to 6.1%. Conclusions  Item response theory and online calibration methods were valuable in improving the DA-CAT.     

Patients' experiences using a computerized program with a touch-sensitive video monitor for the assessment of health-related quality of life.

This study assessed patients' experiences using a computerized program with a touch-sensitive video monitor (TSVM) for the assessment of health-related quality of life (HRQoL). A software program was developed for a computerized form of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, the QLQ-C30. One hundred and seventy-eight patients completed the QLQ-C30, followed by a structured interview designed to assess perceived difficulties with the use of the TSVM. Patients were asked to evaluate the ease of use of different aspects of the TSVM system (using the touch-sensitive screen, entering the patient identification number, reading the screen and following the on-screen instructions). The majority of patients found all aspects of the TSVM system very easy to use. A few patients (1–2%) admitted finding any aspect of the TSVM use somewhat difficult and none ranked any aspect as very difficult. There were no unanswered items in the QLQ-C30. All patients found the amount of time spent on answering the questionnaire acceptable, (the mean time to complete was 6.8 min with a median of 5 min) and 96% stated they were willing to complete a similar questionnaire on a future occasion. From the patients' perspective the TSVM system appears to be a highly acceptable approach for the collection of HRQoL data in clinical practice.     

Toward a general model of health-related quality of life

A health-related quality of life (HRQOL) model that fitted data collected in previous studies from two separate samples—patients with chronic physical illness and patients with chronic mental illness—was adapted and tested on a representative sample drawn from the normal population. This model, which implied that both physical and mental health influenced number of friendships, personal growth, and job satisfaction, fitted the data very well. However, an alternative model reversing the directions of the pathways so that friendships, personal growth, and job satisfaction affected physical health and mental health, with the latter two having a mutual effect on each other, fitted the data even better. This suggests that, although a medical model of HRQOL may be more important when it comes to alleviating illness, a psychosocial model of HRQOL may be more important when it comes to maintaining health and preventing illness. Moreover, the fact that essentially the same five-factor structural model fits three distinct populations, healthy and unhealthy, suggests that there may be a general model of quality of life applicable to all populations. The implications of these findings for clinical theory, policy, and practice are discussed.     

Dizziness impairs health-related quality of life

Purpose

Relatively little is known about the level of impairment in patients with dizziness.

Research question

How much does dizziness impair the quality of life of patients referred to a multidisciplinary dizziness unit?

Patients and methods

All 2,252 patients completed the Dutch version of the Dizziness Handicap Inventory (DHI-D; score 0?C100 with higher scores representing more impairment). The results were classified into three categories: mild, moderate, and severe impairment. The three domains in the DHI representing physical, functional, and emotional aspects of dizziness were compared, as well as DHI scores of men versus women, between diagnoses, and the relationship between DHI and age.

Results

A total of 2,242 patients (64% women, mean age 54?years) completed the DHI with a mean score of 40.6. Almost 70% of patients had moderate or severe complaints. The handicap perceived by patients was primarily caused by physical and functional factors and less by emotional factors. Female patients and patients with hyperventilation syndrome and/or anxiety disorder had significantly higher DHI scores on all subscales. There was an S-shaped relationship between DHI score and age, and older patients reported more impairment.

Conclusion

Dizziness has considerable impact on health-related quality of life of dizzy patients.     

The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review

Background  

The goal of much care in chronic childhood illness is to improve quality of life (QOL). However, surveys suggest QOL measures are not routinely included. In addition, there is little consensus about the quality of many QOL measures.     

Recent viral infection in US blood donors and health-related quality of life (HRQOL)

Purpose

Blood donors are considered to be one of the healthiest populations, but relatively little is known about their perceived quality of life. The objective was to examine HRQOL in donors infected with HIV, HBV, HCV or HTLV and a comparison group.

Methods

Donors with confirmed viral infection (cases) and donors who tested false-positive (controls) participated in a multicenter study of US blood donors (2010–2013), funded by the National Heart, Lung and Blood Institute (NHLBI). HRQOL was measured by the EuroQol Five Dimension (EQ-5D) instrument and EQ-5D visual analogue scale (VAS). The lower 25th ‰ of EQ-5D index or VAS score of controls was defined as a “lower HRQOL.”

Results

A total of 1574 controls completed the HRQOL assessment with a mean EQ-5D index of 0.94 (SD = 0.10) and EQ-VAS of 87.6 (SD = 10.6). Mean EQ-5D index for 192 HIV-, 315 HCV- and 195 HTLV-positive donors were significantly lower than the controls (0.86, 0.83 and 0.87; SD = 0.18, 0.20 and 0.16, respectively, p < 0.001). HBV-positive donors (n = 290) had a similar mean EQ-5D index (0.93, SD = 0.14, p = 0.05) to controls. Anxiety/depression was reported by 34 % of cases, compared with 13 % of controls. In multivariable modeling, the odds of lower HRQOL in HIV, HBV, HCV and HTLV cases were 2.1, 1.6, 2.6 and 2.3 times that of controls, respectively (p < 0.05).

Conclusions

HRQOL reported by blood donors with recent viral infections was relatively high but lower than controls. On average, HRQOL among HCV-positive donors was the lowest and HBV-positive donors reported scores similar to donors without infection.

     

健康相关生命质量的研究进展

健康相关生命质量是对生理和心理健康的综合评价,在临床治疗、药物研究、预防保健、卫生决策和卫生经济评价等方面都发挥着不可取代的作用。本文从健康相关生命质量的内涵、研究概况、测量工具和影响因素等方面进行综述,为今后更好的开展健康生命质量研究提供参考和借鉴。     

Long-term health-related quality of life in eating disorders

Objective

There is limited evidence on the long-term development of health-related quality of life (HRQoL) in eating disorders and its relation to eating disorder symptoms. Our objective was to measure long-term change in the HRQoL of eating disorder patients and compare it to normal population.

Methods

Fifty-four bulimia nervosa (BN) and forty-seven anorexia nervosa (AN) patients (ICD-10 diagnosis) entering treatment completed the 15D HRQoL questionnaire and the Eating Disorder Inventory (EDI) before and approximately 8 years after the start of treatment.

Results

Baseline HRQoL was severely impaired in the patients. During follow-up, mean HRQoL, body mass index (BMI) and EDI improved statistically significantly in both groups. BMI of AN patients reached normal values, but HRQoL was still severely impaired in both AN and BN compared to general population.

Conclusions

The long-term HRQoL after treatment continues to improve, but is still after 8 years poor. Eating disorders are very serious conditions with long-lasting impact on quality of life even after symptom remission.

     

The health-related quality of life in eating disorders

Objective: This study investigated the perception of health-related quality of life (HRQoL) in ambulatory patients with eating disorders in relation to the severity of eating symptomatology and psychological comorbidity. Methods: One hundred ninety-seven study patients were consecutively recruited at the Eating Disorders Outpatient Clinic. Short Form-36 items (SF-36), a generic HRQoL questionnaire, the Eating Attitudes Test (EAT-40), and the Hospital Anxiety and Depression Scale (HAD) were used to measure different aspects of HRQoL. The results of the SF-36 were compared with the norms of the Spanish general population for women 18–34 years of age. Results: Patients with eating disorders were more dysfunctional in all areas of the SF-36 compared with women in the general population. There were no differences among the eating disorder diagnostic groups. Higher scores on the EAT-40 and the HAD were associated with a perception of greater impairment on all SF-36 subscales. Conclusion: The evaluation of HRQoL in these patients confirms the impact of these disorders on daily life in areas not directly related to eating disorders. The SF-36 is useful for discriminating among different levels of severity of eating disorders and other psychological comorbidities of these patients. This revised version was published online in June 2006 with corrections to the Cover Date.