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.

Potential clients' beliefs about the relative competency and caring of psychologists: implications for the profession.

To assess the extent to which the results reported by Warner and Bradley (1991) can be generalized beyond the population of undergraduate psychology students, 132 adults in the metropolitan Harrisburg area were asked to evaluate the competency and traits of clinical psychologists, licensed professional counselors, and psychiatrists. Results indicated that the general public believed counselors to be more caring than psychologists and psychiatrists. All three professional groups were perceived to be comparable in their ability to treat the least severe disorders. Licensed counselors were perceived to be most competent to treat disorders rated by the subjects as moderately severe, comparable in competence to clinical psychologists for adjustment disorders, and comparable to psychiatrists for marital problems. Psychiatrists and psychologists were considered the most competent to treat the most severe disorder, major depression. The results indicate that while clinical psychologists often were viewed as competent, they were not viewed as the single practitioner of choice for any diagnostic classification, nor were they noted to have positive character traits.

Quality of life in ALS is maintained as physical function declines.

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]= 9.87, p < 0.003 and F[3, 177]= 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 ALS depends on factors other than strength and physical function.

OBJECTIVES: To study patients with ALS to determine the following: 1) the relationship between physical function and quality of life (QOL); 2) the instruments that best reflect patients' own ratings of QOL; and 3) whether spiritual/religious factors play a role in determining QOL. METHODS: The authors prospectively studied 96 patients with ALS using several instruments, including the McGill Quality of Life (MQOL) instrument, the Idler Index of Religiosity, the Sickness Impact Profile (SIP)/ALS-19, and several measures of strength and physical function. RESULTS: QOL as assessed by patients (MQOL single item score) did not correlate with measures of physical function and strength, but correlated with the total MQOL score (p < 0.0005), the psychological and existential subscores of MQOL (p < 0. 0005), the support subscore of MQOL (p = 0.001), and the total Idler score (p = 0.001). In contrast, correlations between SIP/ALS-19 and these measures were not significant, although SIP/ALS-19 correlated with measures of physical function and strength. CONCLUSIONS: QOL, as assessed by the patient with ALS, does not correlate with measures of strength and physical function, but appears to depend on psychological and existential factors, and thus may be measured well by the MQOL scale. Spiritual factors and support systems appear to play roles as well. SIP/ALS-19 is a good measure of physical function, but not of overall QOL.

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.

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 scored 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.

Patients' perceived control over their health care: an outcome assessment of their psychological adjustment to renal failure.

Previous research has sometimes produced conflicting results regarding patients' psychological adjustment to end-stage renal disease (ESRD). It is generally accepted that treatment outcomes vary across treatment modality, with successful transplant patients reporting a higher subjective quality of life than patients on center hemodialysis. Hemodialysis and transplantation therapies vary in many ways, including the intrusiveness of treatment on all aspects of the patient's life. In the present study, 65 individuals being treated for ESRD with center hemodialysis or a renal transplant were assessed for health locus of control, for generalized control over 11 life dimensions, and for beliefs about control over specific aspects of treatment for ESRD. The study also included indicators of psychological adjustment. The results indicated that control over life dimensions, which includes control over illness, is a significant factor in psychological adjustment. Beliefs that one can comply specifically with diet and fluid restrictions were related to treatment outcome. These data suggest that interventions designed to increase patients' perception of control are likely to have a positive impact on the qualitative aspect of treatment.

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 patient's 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 cognitive aspects of subjective quality of life, that they are measuring something more 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.

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.

Quality-of-life measures: hospital interview versus home questionnaire.

Measures adapted from social survey research were used to assess the quality of life of 33 end-stage renal disease (ESRD) patients in a 2-week test-retest design that varied both location and format of administration (hospital interview vs. home self-administered questionnaire). The measures were found to have substantial consistency over time, location, and format. These results indicate that quality of life is a stable construct and support the usefulness of questionnaire quality-of-life measures for evaluating medical interventions.