A health-related quality of life measure for multiple sclerosis

The need for measures of health-related quality of life (HRQOL) for clinical effectiveness research and for quality of care research, particularly for chronic diseases, is increasingly recognized. We assessed a measure of HRQOL for people with multiple sclerosis, a chronic neurological condition. We used the RAND 36-Item Health Survey 1.0 (aka SF-36) as a generic core measure, to enable comparisons of HRQOL of patients with multiple sclerosis to those of other patient populations and to the general population. To enhance comparisons within groups of multiple sclerosis patients, these items were supplemented with 18 additional items in the areas of health distress (four items), sexual function (four items), satisfaction with sexual function (one item), overall quality of life (two items), cognitive function (four items), energy (one item), pain (one item), and social function (one item). The final measure, the Multiple Sclerosis Quality of Life (MSQOL)-54 instrument, contains 52 items distributed into 12 scales, and two single items. Internal consistency reliability estimates for the 12 multi-item scales ranged from 0.75 to 0.96 in a sample of 179 patients with multiple sclerosis. Test-retest intraclass correlation coefficients ranged from 0.66 to 0.96. Exploratory factor analysis confirmed two underlying dimensions of physical health and mental health. Construct validity was supported by significant associates between MSQOL-54 scales and degree of multiple sclerosis symptom severity in the prior year, level of ambulation, employment limitations due to health, admission to hospital in the previous year, and depressive symptoms.This research was supported by a grant from the Health Services Research Grant Program of the National Multiple Sclerosis Society. The National Institutes of Neurological Disorders and Stroke provided support for Dr Vickrey through a Clinical Investigator Development Award (K08 NS01669-02). Opinions are those of the authors and do not necessarily reflect the views of the sponsoring institutions, RAND, or the University of California, Los Angeles.     

Psychometric properties of quality of life and health-related quality of life assessments in people with multiple sclerosis

Purpose

There is substantial interest in testing interventions for improving quality of life (QOL) and health-related quality of life (HRQOL) in people with multiple sclerosis (MS). Yet, there is limited research on the psychometric properties of QOL [e.g., Satisfaction with Life Scale (SWLS), Leeds MS Quality of Life Scale (LMSQOL)] and HRQOL [e.g., Short Form 12 Health Survey (SF-12) and Multiple Sclerosis Impact Scale-29 (MSIS-29)] measures in this population. Such research is important for designing and interpreting interventions. We examined the test–retest reliability, measurement error, and interpretability of QOL (i.e., SWLS and LMSQOL) and HRQOL (i.e., SF-12 and MSIS-29) measures over 6 months in people with MS.

Methods

Individuals with MS (n = 274) completed the SWLS, LMSQOL, SF-12 and MSIS-29 on two occasions, 6 months apart. We estimated test–retest reliability [intraclass correlation coefficient (ICC)], measurement error [standard error of measurement (SEM) and coefficient of variation] and interpretability [smallest detectable change (SDC)].

Results

Intraclass correlation coefficient values ranged between moderate and good (ICC range = 0.669–0.883); the MSIS-29 physical component had the best reliability, and the SF-12 mental component had the worst reliability. Measurement error, based on percent SEM, varied among measures; the physical and mental components of the SF-12 (%SEM = 4.6 and 5.3, respectively) had the best measurement error, and the MSIS-29 mental component (%SEM = 13.2) and the SWLS (%SEM = 12.7) had the worst measurement error. Interpretability, based on percent SDC, varied among measures; interpretability was best for the physical and mental components of the SF-12 (%SDC = 12.7 and 14.7, respectively) and worst for the MSIS-29 mental component (%SDC = 36.7) and the SWLS (%SDC = 35).

Conclusion

We provide novel data for helping researchers and clinicians select and interpret QOL and HRQOL measures and scores for interventions among people with MS. Such information will better inform our understanding of intervention effectiveness.     

Published norms underestimate the health-related quality of life among persons with type 2 diabetes

Objective

To assess health-related quality of life (HRQL) among adults with type 2 diabetes using the Short Form (SF)-36 and to obtain pooled estimates of HRQL for subpopulations defined by demographic characteristics, diabetes-related complications, and comorbidities.

Study Design and Methods

We conducted computerized searches of multiple electronic bibliographic databases, and studies in any language were selected in which HRQL was reported among adults with type 2 diabetes using the SF-36. Estimates were combined using a random-effects model.

Results

One hundred eighteen studies fulfilled the inclusion criteria. HRQL was lower in persons with type 2 diabetes, as measured by all the eight component scores of the SF-36 when compared with the existing U.S. population norms and with previously published type 2 diabetes norms. SF-36 component and summary scores were extremely heterogeneous, and subpopulation data were sparse; this precluded obtaining meaningful pooled scores for most populations of interest and made comparisons among subpopulations difficult.

Conclusion

Our data suggest that previously published norms may underestimate the effect of diabetes on HRQL, and diabetes populations are extremely heterogeneous, making broad population “norms” for HRQL in type 2 diabetes of limited use. Additional research with important subpopulations and individual-level data are needed to further explore the effect of diabetes on HRQL.     

Measuring health-related quality of life in persons with genital herpes

A disease-specific measure was needed for use in an international clinical trial to evaluate an investigational drug for genital herpes. A new measure was developed initially in the UK and translated and adapted for use in France, Italy, Germany, Denmark, Spain and the USA. This paper describes the translation and adaptation of the USA measure. It also describes the assessment of internal consistency, reproducibility, content validity, and construct validity (convergent and discriminant) of the measure. Two outcome measures of the final genital herpes-specific measure were developed: (1) a 21-item symptoms subscale; and (2) a 20-item HRQOL subscale. Each measure was scored and analyzed separately; the psychometric testing discussed in this paper refers to the HRQOL subscale only. The internal consistency of the HRQOL subscale is high (r=0.93), as is the reproducibility measured with a two week interval (r=0.85). Convergent validity is moderate to high. (Fleming Self-Regard subscale,r=0.48; SF-36 Social Functioning dimensionr=0.59; SF-36 Mental Health dimensionr=0.50). The number of herpes outbreaks in the past year was a significant predictor of scores on the HRQOL subscale (0–1 outbreaks, mean=82.1; 2+ outbreaks, mean=72.1,p=0.058) suggesting discriminant validity. The measure is currently in a phase III clinical trial including anti-viral therapy where the question of responsiveness can be addressed.This work was carried out at the University of Washington, School of Public Health and Community Medicine and was funded by Burroughs Wellcome and Wellcome UK     

Role of health-related quality of life measures in the routine care of people with multiple sclerosis

Health-related quality of life instruments are expected to be of particular value in routine care of people with multiple sclerosis (MS), where they may facilitate the detection of disease aspects that would otherwise go unrecognised, help clinicians appreciate patient priorities particularly in terms of treatment goals, facilitate physician-patient communication, and promote shared decision-making. However, it appears that these instruments are little used routine clinical approaches to people with MS. To address this issue, I performed a bibliographic search of studies that evaluated the efficacy of generic or disease-specific health-related quality of life (HRQOL) instruments in MS clinical practice from clinicians' or patients' perspectives. I found only one cross-sectional study, which compared preferences for three instruments, and assessed acceptability in people with MS.     

Comparison of health-related quality of life questionnaires in ambulatory oncology

The purpose of this study is to compare three commonly used health-related quality of life (HR-QOL) questionnaires for their ease of use, accuracy, and patient preference; identify factors related to patient preference; identify differences in patient completion rates; and to identify factors associated with patient completion of these questionnaires. Three psychometrically sound measures, the Symptom Distress Scale (SDS), Medical Outcome Study Short Form-36 (SF-36), and Functional Assessment of Cancer Therapy (FACT), were tested. Seventy-nine patients completed questionnaires in the ambulatory oncology setting. No significant differences in patient ratings were found in ease of use and accuracy among the questionnaires. All of the questionnaires were rated as easy to use and accurate. Patient ratings on preference were marginally significant (p=0.07). Forty-six percent of participants indicated that they preferred the SDS, whereas 27 and 39 preferred the SF-36 and the FACT. No significant differences in patient completion rates were found among the questionnaires. One hundred percent completion rates ranged from 88.6 for the SDS to 78.5 for the SF-36, and 80 completion rates ranged from 98.7 for the SDS to 94.9 for the SF-36. Administration of standardized HR-QOL questionnaires is feasible in the clinical setting.This research was supported by an American Cancer Society Institutional Research Grant (IRG 58-012-42) through Yale Comprehensive Cancer Center and a grant from Bayer Pharmaceutical Company.     

Weight loss and health-related quality of life: results at 1-year follow-up

To evaluate the 1-year results of treatment-induced weight loss on health-related quality of life (HRQL), 32 mildly to moderately overweight persons who participated in a 13-week weight loss program completed the Medical Outcomes Study Short Form-36 Health Survey (SF-36) at baseline, immediately after the program, and at 1-year follow-up. At 1 year, 65.6% of participants maintained at least some weight loss. The improvements on HRQL observed immediately after treatment on the physical functioning, role-physical, general health, vitality, and mental health scales of the SF-36 were maintained only on the general health and vitality scales at 1 year. There were no significant differences between weight maintainers and weight regainers on change from baseline to 1-year follow-up on HRQL. Our findings suggest that treatment-induced weight loss among mildly to moderately overweight persons improves HRQL and that at least some of these benefits are maintained at 1-year follow-up regardless of whether the weight loss is maintained.     

Physical activity, self-efficacy, and health-related quality of life in persons with multiple sclerosis: analysis of associations between individual-level changes over one year

Background

Physical activity and self-efficacy represent behavioral and psychological factors, respectively, that are compromised in persons with multiple sclerosis (MS), but might be modifiable through intervention and result in better health-related quality of life (HRQOL).

Purpose

The present study adopted a panel research design and examined the associations between individual-level changes in physical activity, self-efficacy, and HRQOL over a one-year period in persons with MS.

Method

The sample consisted of 269 persons with relapsing–remitting MS who completed the Godin Leisure-Time Questionnaire (GLTEQ), Multiple Sclerosis Self-Efficacy (MSSE) Scale, and Multiple Sclerosis Quality of Life—29 (MSIS-29) Scale on two occasions that were separated by 1 year. The data were analyzed using panel analysis in Mplus 3.0.

Results

The initial panel analysis indicated that individual-level change in physical activity was associated with individual-level change in both physical and psychological HRQOL. The subsequent panel analysis indicated that (a) individual-level change in self-efficacy for functioning with MS was associated with individual-level change in physical HRQOL, whereas individual-level change in self-efficacy for control was associated with individual-level change in psychological HRQOL; (b) individual-level change in self-efficacy for functioning with MS, but not self-efficacy for control, mediated the association between individual-level change in physical activity and physical HRQOL; and (c) individual-level change in self-efficacy for controlling MS was the strongest predictor of individual-level change in HRQOL.

Conclusion

Physical activity and self-efficacy both might be important targets of subsequent behavioral and self-management interventions for improving the HRQOL of persons with MS, although self-efficacy is seemingly more important than physical activity.     

Long-term care planning and preparation among persons with multiple sclerosis

Individuals with multiple sclerosis (MS) primarily rely on informal supports such as family members and assistive technology to meet their daily needs. As they age, formal supports may become important to compliment these supports and sustain community-based living. No previous research exists exploring plans and preparations of persons with MS for future independent living and long-term care needs. We analyzed data from a random sample survey (N = 580) to assess knowledge and perceptions of future service needs using ANOVA, chi-square, correlations, and MANOVA procedures. Results indicate that overall, most respondents are not well informed and have not planned or prepared for future care needs. Persons reporting severe MS were more likely to plan and prepare. Key "entry points" for making preparations include receiving specific education and planning information, discussions with family and professional service providers, and increased age, education, and income. We recommend greater infusion of long-term care planning into these existing entry points and creation of new entry points including healthcare provides and insurers.     

An analysis of the relationship of character strengths and quality of life in persons with multiple sclerosis

Quality of Life Research - To examine the relationship of character strengths and quality of life (QOL) in persons with multiple sclerosis (MS). Specifically, this study examined the relationship...     

Low health-related quality of life among abused women

In a cross-sectional study, we sent a self-administered questionnaire to all the women’s shelters in Norway to describe health-related quality of life among women who had experienced violence from an intimate partner. Every woman who could understand Norwegian and was staying at a women’s shelter in Norway for more than 1 week from October 2002 to May 2003 was asked to participate. We described violence by intimate partners by using the Severity of Violence against Women Scale and the Psychological Maltreatment of Women Index. We used the SF-36 Health Survey to measure health-related quality of life. These women experienced a multitude of threats and actual physical and psychological violence during their partnership. Their health-related quality of life was low and significantly (p<0.001) below the norm for the female population of Norway in all dimensions. The SF-36 mental health dimension was 2.5 standard deviations below the norm. Women at women’s shelters in Norway who had experienced domestic violence had very low and clinically significantly reduced health-related quality of life scores. Health care workers must give priority to developing intervention plans for victims of violence from intimate partners.     

Factors associated with health-related quality of life among Belgrade University students

Purpose  

The aims of the study were to evaluate health-related quality of life (HRQoL) among students of University of Belgrade (Serbia) and to identify factors that might have associated with their HRQoL including relationship with depression.     

Health-related quality of life among persons with epilepsy--Texas, 1998

Epilepsy is a central nervous system disorder characterized by unprovoked, recurrent seizures that may affect physical, mental, or behavioral functioning. In 1995, approximately 2.3 million persons residing in the United States had epilepsy. Approximately 181,000 new cases of epilepsy are diagnosed each year, with annual estimated costs of $12.5 billion in medical care and lost productivity. Because epilepsy has a substantial impact on health (e.g., physical and psychosocial difficulties, side effects of anticonvulsant therapy, lifestyle restrictions, and perceived stigmatization), self-reported physical and mental health-related quality of life (HRQOL) measures are useful in gauging the impact of epilepsy on persons with the disorder. Persons with chronic health disorders are at risk for impaired HRQOL. Few studies have examined the HRQOL of persons with epilepsy, and none has used a representative sample of adults residing in the United States. This report examines data from the 1998 Texas Behavioral Risk Factor Surveillance System (BRFSS) that included a question about epilepsy; findings indicate that persons with epilepsy reported substantially worse HRQOL than persons without epilepsy. Community-based interventions such as the Sepulveda Epilepsy Education Program that address medication self-management, psychosocial self-management, and other education interventions can improve the quality of life for persons with epilepsy.     

Changes in quality of life among persons with HIV infection

Health-related quality of life (QOL) is an important component of the evaluation of patient outcome in HIV infection where disease is progressive and debilitating. This paper compares patient-reported QOL obtained from questionnaires which cover functional ability, social functioning, cognition, mental health, disability days, disease symptoms, and overall health in the previous 3 months. These scales have been validated on HIV populations. We compared changes in health status over 12 months for 669 patients with varying HIV disease severity: 134 asymptomatic, 416 symptomatic (previously termed ARC), and 119 AIDS. Groups were evaluated at baseline for demographic and health status differences (i.e., age, CD4+). Declines in health status and psychosocial status were found over the year for all persons. Individuals with symptomatic disease or AIDS had significant declines of 10–20% (p<0.001) in all aspects of role functioning (social, daily activities, energy, and global health) and increased disease symptoms, but no significant declines in cognition or mental health. Persons with AIDS had greater declines than those with symptomatic disease. AIDS and symptomatic patients also reported significantly fewer hours at work and more disability days than asymptomatic patients. The impact that HIV disease has on the health status of non-AIDS symptomatic patients is especially striking.This research was supported by a grant from the Agency for Health Care Policy and Research (HS06211) to James F. Fries, Principal Investigator. This paper was presented at the VIII International Conference on AIDS, Amsterdam, July 1992.     

Preference-based health-related quality of life among victims of bullying

Purpose

No previous study has estimated the association between bullying and preference-based health-related quality of life (HRQoL) (“utility”), knowledge of which may be used for cost-effectiveness studies of interventions designed to prevent bullying. Therefore, the aim of the study was to estimate preference-based HRQoL among victims of bullying compared to non-victims.

Methods

A cross-sectional survey data collection among Swedish adolescents aged 15–17 years in the first year of upper secondary school was conducted in the city of Gothenburg in Sweden (N = 758). Preference-based HRQoL was estimated with the SF-6D. Regression analyses were conducted to adjust for some individual-level background variable.

Results

Mean preference-based health-related quality of life scores were 0.77 and 0.71 for non-victims and victims of bullying, respectively. The difference of 0.06 points was statistically significant (p < 0.05) and robust to inclusion of gender, age, and parental immigrant status.

Conclusions

The preference-based HRQoL estimates in this study may be used as an upper bound in economic evaluations of bullying prevention interventions, facilitating a comparison between costs and quality-adjusted life-years.

     

Costs and quality of life in multiple sclerosis

We performed a cross-sectional, “bottom-up” observational study of resource use, costs, and quality of life in patients with multiple sclerosis (MS) in Germany. Six centers participated in the study. Patients were asked to complete a questionnaire, and a total of 737 patients returned it (response rate 66%). The questionnaire provided information on all resource consumption, medical, and nonmedical, work absence, informal care related to their MS, and quality of life (EuroQol). Simultaneously, medical charts were also abstracted for a subsample of 202 patients for comparison between answers in the questionnaires and registered data. Levels of disability were assessed using the Expanded Disability Status Scale. The mean age of the cohort was 41.9±14.1 years (disease onset 33.4), mean EDSS score 4.4 (range 1.0–9.5), and mean utility measured by EQ-5D 0.552±0.331). Mean total cost per patient and year was 65,400 DM, adjusted for use of interferons, which was higher in this sample than the current average use in Germany. When this cost is extrapolated to an estimated patient population of 120,000, total costs to society are estimated at 7.85 billion DM. Direct costs represented 57.5%, informal care accounted for 12.1% and indirect costs amounted to 42.5%. Public payers pay for an estimated 24,800 DM per patient or 38% of total costs. All types of costs (direct, informal care, indirect) increased with increasing disability, while utilities decreased.     

The impact of regular physical activity on fatigue, depression and quality of life in persons with multiple sclerosis

Background  

The purpose of this study was to compare fatigue, depression and quality of life scores in persons with multiple sclerosis who do (Exercisers) and do not (Non-exercisers) regularly participate in physical activity.     

Typology of quality of life experiences among persons living with HIV

This article develops a typology of 2,038 participants in 13 innovative HIV/AIDS treatment model service demonstration projects targeted to traditionally underserved populations. The typology is based on self-reported health-related quality of life levels. Eight clusters were identified that classify HIV/AIDS patients based on their reported health-related quality of life. Participants were clustered based on their overall levels of quality of life, as well as by deficits in specific areas of functioning such as energy level, physical impairment, and role impairment. However, factor analysis suggests that health-related quality of life as perceived by the HIV-positive participants is best represented as a single underlying dimension and an ordering of the types shows that they are consistently related, in the same order, to several criterion measures of impairment. The results suggest that a general categorization of patients with HIV in terms of quality of life is more meaningful than an assessment of the relative areas of impairment. Since the impairment ratings were also self-reported, analyses relating quality of life clusters to actual symptom levels and healthcare utilization are needed. Implications for the assessment of health-related quality of life and the evaluation of service delivery programs for persons living with HIV are discussed.