Barbara A. Bremer

Quality of life in ALS is maintained as physical function declines

Article abstract—Objectives: To study patients with ALS to determine how physical function, quality of life (QOL), and spirituality or religiousness change over time, and what relationship these changes have to one another. Methods: Sixty patients with ALS were studied prospectively. They were assessed at baseline, 3 months, and 6 months, using questionnaires designed to measure general quality of life (McGill Quality of Life questionnaire), religiosity (Idler Index of Religiosity), ALS-specific health-related quality of life (SIP/ALS-19), and ALS-specific function (ALS functional rating scale). Results: A two-way repeated measures multivariate analysis of variance revealed that both the passage of time and the specific QOL scales used were factors in predicting patient quality of life (F[1, 59]5 9.87, p , 0.003 and F[3, 177]5 16.90, p , 0.001) Despite a progressive decline in physical function as measured by the ALS-specific function score, the general QOL and religiosity scores changed little. In contrast, the ALS-specific health-related QOL score declined in parallel with the ALS-specific function score. Conclusions: QOL in patients with ALS appears to be independent of physical function, which agrees with a previous cross-sectional study. The ALS-specific health-related QOL score is primarily a measure of physical function. QOL instruments that assess spiritual, religious, and psychological factors produce different results than those obtained using measures of physical function alone.

Quality of Life in End-Stage Renal Disease: A Reexamination

A self-administered questionnaire assessing both objective and subjective quality of life was completed by 489 end-stage renal disease (ESRD) patients in a representative sample of an entire network. Patients differed in both objective and subjective quality of life when examined as a function of treatment modality. The quality of life is similar for successful transplant and home hemodialysis patients; these patients appear to fare better than other treatment groups on both objective and subjective measures. Patients receiving staff-assisted center hemodialysis and continuous ambulatory peritoneal dialysis (CAPD) report markedly diminished quality of life; these decrements remained after statistically controlling for nontreatment variables. Diminished quality of life was most pronounced in dialysis patients who had experienced failed transplants. All treatment groups showed some objective losses, especially loss of employment, but patients in the best rehabilitated treatment groups showed near-normal subjective quality of life. The results confirm previous reports that the subjective quality of life of ESRD patients can be nearly normal despite objective losses, but demonstrate that inadequate definition of treatment groups has led to misperceptions about the impact of transplant failure.

The ALSSQOL: balancing physical and nonphysical factors in assessing quality of life in ALS.

Background: There is no generally accepted instrument for measuring quality of life (QOL) in patients with ALS. Current instruments are either too heavily weighted toward strength and physical function or useful for the evaluation of individuals but of less utility in assessing large samples. Objective: To develop and evaluate the psychometric properties of an ALS-specific QOL instrument (the ALSSQOL) that would reflect overall QOL as assessed by the patient and would be valid and reliable across large samples. Methods: The ALSSQOL is based on the McGill Quality of Life Questionnaire (MQOL), modified by changes in format and by adding questions on religiousness and spirituality, items derived from interviews with ALS patients, and items identified from open-ended questions administered during the MQOL. The psychometric properties of the ALSSQOL were assessed by a prospective multicenter study in which participants completed the ALSSQOL, other instruments measuring overall QOL, and instruments assessing religiousness, spirituality, and psychological distress. Results: A 59-item ALSSQOL was developed; 342 patients evaluated its psychometric properties. Completion time averaged 15 minutes. Forty-six items loaded on six factors. The ALSSQOL demonstrated concurrent, convergent, and discriminant validity for the overall instrument and convergent validity for its subscales. Analysis of individual items permitted insight into variables of clinical importance. Conclusions: This new ALS-specific quality of life instrument is a practical tool for the assessment of overall quality of life in individuals with ALS and appears to be valid and useful across large samples. Validation studies of a shortened version are now under way.

Religiousness is related to quality of life in patients with ALS

The authors studied quality of life (QOL) and religiousness in 49 patients with ALS over five consecutive visits spanning approximately 1 year. QOL was not significantly correlated with religiousness at entry. Over time, a significant relationship developed between QOL and total, public, and private religiousness.

The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations.

The Schedule for the Evaluation of the Individual Quality of Life-Direct Weighting (SEIQoL-DW) has been used to measure quality of life (QoL) in small cohorts of individuals with ALS, but its suitability for assessing aggregate QoL for between-group comparisons is uncertain. We undertook a prospective study in which 120 patients with ALS completed two measures of QoL, the SEIQoL-DW and the McGill Quality of Life Single-Item Scale (MQoL-SIS). There was a weak correlation between the SEIQoL-DW index score and the MQoL-SIS. Only three of five cues accounted for a significant amount of variance in the MQoL-SIS, and even those accounted for only 12.8%–13.9% of the variance. Cues relating to family or significant other were chosen by over 90% of patients, and were the most heavily weighted. This study demonstrates that the SEIQoL-DW is of great value in identifying those factors which contribute to the psychosocial well-being of an individual with ALS. However, SEIQoL index scores may not reflect aggregate QoL of groups of patients with ALS, and may be measuring a construct other than QoL. Caution should be exercised in using the SEIQoL index score to measure QoL of groups, such as would be needed in interventional trials.

Neuropsychological, physical, and psychosocial functioning of individuals with end-stage renal disease.

Individuals (N=24) being treated for end-stage renal disease (ESRD) were compared to healthy control participants (N=20) on measures of neuropsychological, physical, and psychosocial functioning. ESRD patients crored significantly lower than controls (p<.03) on Trail Making Test—Part B; 37.5% of ESRD patients were classified as impaired versus 15% of controls. ESRD patients scored lower than controls on SF-36 measures of Physical Functioning (p<.001). Psychosocial deficits were on the Affect Balance Scale (p<.04) and in employment (p<.04). The hypotheses that neuropsychological status would be associated with psychosocial differences in terms of decrements in both affect and employment rates were also supported. Mediational analysis suggested that neuropsychological status plays a role in the lower employment rates seen among ESRD patients. Clinical and research implications are discussed.

Perceptions of control, physical exercise, and psychological adjustment to breast cancer in South African women

Psychological adjustment and locus of control were measured in 257 South African women both with and without breast cancer. Adjustment was defined as positive affect, negative affect, the balance between the two, satisfaction with various domains of life, and an overall sense of well-being. Health locus of control was measured separately for internal, external, and chance loci. The instrument’s reliability was comparable to that reported for U.S. norms. The women with breast cancer reported significantly lower affect and had lower internal and higher external and chance perceptions of control. The more invasive the surgical treatment, the greater the negative impact on adjustment. Data suggested that using written instructions to stress the importance of exercise to rebuild arm strength immediately following the surgery had a long-lasting positive impact on affect. Side of intervention was also related to psychological adjustment. Significant differences across racial groups were found for both adjustment and health locus of control.

Psychological Morbidity in ALS: The Importance of Psychological Assessment Beyond Depression Alone

Abstract The assessment of psychological morbidity in patients with ALS has centered around depression, hopelessness, and anxiety. The Brief Symptom Inventory (BSI) offers an opportunity to explore psychological morbidity more broadly. We administered this instrument to 111 patients with ALS as part of a larger study of quality of life. Scores of ALS patients on the Global Severity Index and Positive Symptom Distress Index were comparable to the majority of distressed psychiatric outpatients and significantly higher than those of non-patient adults. Among BSI subscales, scores on the Anxiety, Depression, Phobic Anxiety, and Somatization subscales also were not significantly different from distressed adult psychiatric outpatients, and were greater than normal mean scores for a non-patient population sample. Based on these data, ALS patients appear to be significantly more distressed than non-patients in the identified areas, and as distressed as approximately 68% of a distressed psychiatric outpatient sample. In conclusion, a substantial number of individuals with ALS experience psychological distress of various types. Because psychological health impacts lifespan and quality of life in these individuals, broadly-based mental health assessment and treatment should remain an important part of care for patients with ALS. The effects of physical symptoms on responses to questions used to assess psychological distress must be considered.

Absence of control over health and the psychological adjustment to end-stage renal disease.

To examine the relationship between perceived locus of control over treatmen and psychological adjustment to end-stage renal disease (ESRD), 138 individuals were assessed for beliefs about control over health outcomes with the Multidimensional Health Locus of Control Scales, and for psychological adjustment using the Affect Balance Scale and the Index of Weil-Being. Results indicated that locus of control for health was not related to treatment modality, but was significantly related to indicators of emotional adjustment. Data suggest that perceived locus of control over treatment outcome acts as a moderator variable in predicting psychological adjustment to ESRD. One year later, 47 of the original subjects participated in a follow-up study. The relationship between perceived locus of control and psychological adjustment was replicated. Implications for the relationship between locus of control over health and psychological and physiological well-being following renal failure are discussed.

Subjective quality of life measures for evaluating medical intervention.

Medical interventions are usually evaluated in terms of mortality and morbidity data, but there is recent interest in going beyond medical data to assess the impact of the therapy on the objective and subjective quality of the patients life. Objective quality of life measures such as employment and functional status are relatively straightforward, but measuring subjective quality of life is a more complex task. This article reviews psychometric issues relevant to using subjective quality of life scales developed by Bradburn and by Campbell, Converse, and Rodgers for research with patient populations. The evidence indicates that these relatively brief scales assess both affective and cogitaiive aspects of subjective quality of life. that they are measuring somethingmore stable than mood but less enduring than personality and that they can be as sensitive as physiological measures in distinguishing among treatment groups. It is concluded that these scales offer a useful complement to more objective measures of patient status for research evaluating medical interventions.