L. Cohen

Exploring differences between subgroups of multiple sclerosis patients in health-related quality of life

Abstract Health-related quality of life (HRQoL) questionnaires finding increasing use in medicine, but still only few publications have reported on HRQoL in patients with multiple sclerosis (MS). Because of its progressive and disabling nature, the disease has a considerable effect on HRQoL. To facilitate the interpretation of scores for the heterogeneous MS population, we explored differences between subgroups of MS outpatients (n = 90) on two HRQoL instruments: the Medical Outcome Study Short Form-36 and the Disability and Impact Profile. Three disease-related characteristics were studied: severity of MS, time since diagnosis, and MS progression in the past 6 months. The results show that each of these have an effect on one or more aspects of HRQoL. Thus, the longer the disease duration and the more severe and progressive the MS, the lower is the patient’s experienced HRQoL.

A health-related quality of life questionnaire for multiple sclerosis patients

Objective ‐ The construction of a brief, valid and reliable HRQoL questionnaire for use in multiple sclerosis patients based on generic and disease‐specific HRQoL measures. Material and methods ‐ The Medical Outcomes Study 36‐item Short Form Health Survey (SF‐36), COOP/WONCA Charts, and Disability & Impact Profile (DIP) were used in a longitudinal study in 162 patients with multiple sclerosis. Results ‐ Factor analyses identified 2 underlying dimensions of HRQoL, relating to “physical functioning” and “psychological functioning”. Selection of the 3 highest loading reliable scales on each factor resulted in a final questionnaire consisting of 3 scales of the SF‐36 and 3 scales of the DIP. In total 40 items were selected; completion time is about 10 min. Conclusion ‐ The final questionnaire adequately measured 2 dimensions of HRQoL. The length of the questionnaire is acceptable for patients with MS in view of respondent burden.

Psychological Functioning of Adolescent Transsexuals: Personality and Psychopathology

Adolescent transsexuals were compared with adolescent psychiatric outpatients and first-year university students to determine the extent to which other psychopathology is a necessary condition for the development of transsexualism. Three areas of psychological functioning associated with fundamental psychological disturbances--perceptual inaccuracy, disorders of thought and negative self-image--were assessed by means of the Rorschach Comprehensive System. The group of adolescent transsexuals was found to be intermediate between adolescent psychiatric patients and nonpatients for extent of perceptual inaccuracy. They did not differ significantly from nonpatients with regard to thinking disturbances and negative self-image. The psychiatric patients included significantly more individuals characterized by negative self-image than the other groups. The results support the idea that major psychopathology is not required for the development of transsexualism.

Preconditions for Sensitivity in Measuring Change: Visual Analogue Scales Compared to Rating Scales in a Likert Format:

In a study of preconditions of responsiveness, we examined the variances obtained by two different ways of responding to questionnaire items. Subjects were 168 first-year medical students. They all completed a questionnaire of nine items. The original Liken-like scoring was (partially) replaced by visual analogue scoring in three quarters of the questionnaires. For three items the analogue form had a significantly greater variance than the discrete form, but no discrete item had a significantly greater variance than its analogue counterpart. Assuming that a greater variance was indicative for a greater responsiveness, our findings provide some support for the preferred use of analogue scales over discrete response categories in the measurement of changes over time.

Postoperative Psychological Functioning of Adolescent Transsexuals: A Rorschach Study

The Rorschach Comprehensive System was used to assess postoperative psychological functioning in transsexuals who applied for sex reassignment in adolescence. We investigated a group of 22 consecutive adolescent transsexuals, who were otherwise psychologically well adapted. Nineteen subjects provided valid Rorschach protocols before and after sex reassignment. The most notable change found was an increase in X+%, reflecting a decrease in both distorted perception and idiosyncratic perception. Little support was found for the idea of major psychological deterioration for the patients as a group. Rather, the results suggest stability in psychological functioning over time. The Rorschach findings are consistent with questionnaire data from earlier studies, with the exception that the Rorschach data may point to some improvement in reality testing.

A comparison of responsiveness indices in multiple sclerosis patients

Responsiveness was measured in a number of health-related quality of life (HRQoL) instruments among which two generic (SF-36 and COOP/WONCA Charts) and one disease-specific instrument, the Disability & Impact Profile (DIP). Subjects were 162 multiple sclerosis patients. The following responsiveness indices were used: effect size, standardised response mean and smallest real difference (SRD). The latter measure gives an indication of the magnitude of real change, i.e. change not attributable to ‘noise’ or ‘error’ and can thus be used for the interpretation of change scores in clinical practice whereby change scores larger than the SRD value indicate real change. It is assumed that low SRD values indicate high responsiveness. The results confirmed our expectation that the effect size and standardised response mean are probably less suitable for use in slowly progressive diseases, since they use the average change as the numerator. Therefore, the article focused on the SRD. Compared to scales, items measured on a visual analogue scale show high SRD values. The DIP scales generally show lower SRD values compared to scales of other questionnaires. The SRD seems to be a promising new measure to study responsiveness. More research into the interpretation of this measure is necessary.

USING THE SHORT FORM-36 WITH MULTIPLE SCLEROSIS PATIENTS IN FIVE COUNTRIES: A CROSS-CULTURAL COMPARISON

Questionnaires measuring health-related quality of life are increasingly used in international studies of medical effectiveness. It is important to know if data from these instruments are comparable across countries. We initiated a collaboration among five research groups—from the USA, The Netherlands, Belgium, France, and the UK—in the field of health-related quality of life in multiple sclerosis. All groups used the 36-item Short Form Health Survey. The goal of our study was to make a cross-cultural comparison. In the five countries under study the sample size varied from 50 to 134 patients with multiple sclerosis. The survey was completed by a total of 457 patients, who were heterogeneous in relation to age, duration of illness, severity and type of multiple sclerosis. There appeared to be major differences among the samples in scores on each of the eight scales. These findings may be influenced by differences in method of recruitment, demographic and disease-related characteristics, administration, and cultural factors. After having performed a number of analyses, it appeared that the differences were mainly attributable to sampling effects; however, cultural influences could not be excluded.

Factor structure of the disability and impact profile in patients with multiple sclerosis

The Disability and Impact Profile (DIP) is used for the measurement of quality of life in multiple sclerosis (MS) patients. Data from 211 persons with definite MS from Belgium, Denmark and the Netherlands were used to address three questions. To what extent do the impairment ratings and their complementary weighted scores share common variance? What is the factor structure of the weighted scores? To what extent do disease-related information and information from psychological questionnaires offer concurrent validity for the factors? Correlations between impairment ratings and the weighted item scores were high; for most items the complementary ratings of impact do not supplement information provided by impairment ratings. The DIP weighted scores can be represented to some extent by three independent dimensions: a motor (skeletal movement) or displacement ability factor, a factor relating to sensory–cognitive intactness and a psychological well-being factor. A two-factor solution provides a first factor identical to that of the three-factor solution and a second factor representing psychological well-being. The two factors correlate well with instruments measuring disability and with satisfaction versus emotional distress. Provisional scales based on the factors were constructed.

Effects of the pure antiandrogen RU 23.903 (anandron) on sexuality, aggression, and mood in male-to-female transsexuals

Sexuality, aggression, and mood were investigated in 14 presurgical male-to-female transsexuals, undergoing antiandrogenic treatment with anandron, a pure antiandrogen. Subjects were given a test battery the morning prior to treatment onset and after 8 weeks of treatment. In addition they were requested to complete daily forms concerned with sexual behavior and mood. Morning erections and the frequency of thoughts and fantasies about sex decreased after anandron intake. Aggressive feelings were uncorrelated with testosterone level. Moods such as level of energy, feelings of relaxation, fatigue, and feelings of tension and anxiety appeared to fluctuate more as a consequence of anandron intake than did moods such as cheerful, sociable and friendly, gloomy and unhappy, irritated and changeable. The latter remained at a constant level.

Type A behavior pattern in mothers of infants: an exploration of associations with attachment, sensitive caregiving and life-events

Abstract In the present study. 83 lower- to upper-middle class mothers of first-born, 12-month-old infants were interviewed with the Adult Attachment Interview (George, Kaplan, and Main, 1985), and completed the Groninger Intelligence Test (Luteijn and Van der Ploeg, 1982). Eighteen months after the beginning of the study, 67 mothers (81% of the original sample) were interviewed with the Structured Interview (Rosenman, 1978), and were observed during a brief, semi-structured play session at home with their child - at that time a 2.5-years-old toddler. They also completed a checklist about major life-events that had occurred during the past 18 months. A large majority of these mothers of young children (81%) showed Type A behavior patterns. The job of parenting, indeed, appears to be stressful. Attachment and Type A behaviors, however, did not seem to be related, probably because the influence of attachment is restricted to the regulation of emotions in intimate relationships. Yet, Type A behavior predicte...