Development and validation of a patient self-assessed questionnaire on satisfaction with communication of the multiple sclerosis diagnosis.

BACKGROUND: We describe the development and clinical validation of a patient self-administered tool assessing the quality of multiple sclerosis diagnosis disclosure. METHOD: A multiple sclerosis expert panel generated questionnaire items from the Doctor's Interpersonal Skills Questionnaire, literature review, and interviews with neurology inpatients. The resulting 19-item Comunicazione medico-paziente nella Sclerosi Multipla (COSM) was pilot tested/debriefed on seven patients with multiple sclerosis and administered to 80 patients newly diagnosed with multiple sclerosis. The resulting revised 20-item version (COSM-R) was debriefed on five patients with multiple sclerosis, field tested/debriefed on multiple sclerosis patients, and field tested on 105 patients newly diagnosed with multiple sclerosis participating in a clinical trial on an information aid. The hypothesized monofactorial structure of COSM-R section 2 was tested on the latter two groups. RESULTS: The questionnaire was well accepted. Scaling assumptions were satisfactory in terms of score distributions, item-total correlations and internal consistency. Factor analysis confirmed section 2's monofactorial structure, which was also test-retest reliable (intraclass correlation coefficient [ICC] 0.73; 95% CI 0.54-0.85). Section 1 had only fair test-retest reliability (ICC 0.45; 95% CI 0.12-0.69), and three items had 8-21% missed responses. CONCLUSIONS: COSM-R is a brief, easy-to-interpret MS-specific questionnaire for use as a health care indicator.

The Multiple Sclerosis Knowledge Questionnaire: a self-administered instrument for recently diagnosed patients.

There are few studies on patient knowledge in multiple sclerosis (MS), and only two published questionnaires. The objective of this article was to develop and validate the MS Knowledge Questionnaire (MSKQ), a self-assessed instrument for newly diagnosed MS patients. Thirty multiple-choice statements, conceived to test MS knowledge, were produced by a multidisciplinary panel and pre-tested on three MS patients, resulting in an intermediate 26-item version. This was tested on 54 MS patients for internal consistency, content and construct validity (validation sample I). The final (25-item) MSKQ was a primary outcome measure in the SIMS-Trial on an information aid to newly diagnosed MS patients. Postal responses of SIMS-Trial participants to the MSKQ a month after intervention (validation sample II) were analysed. Median MSKQ scores in validation samples I and II were, respectively, 18 (range 9-23) and 17 (range 3-24). Acceptability, internal consistency (Kuder-Richardson-20 formula 0.76) and content validity were good. Educational attainment and receiving the information aid were the main independent predictors of MS knowledge. Other predictors were female sex (positive association) and disease duration (negative association). In conclusion, the MSKQ has good clinimetric properties and is sensitive to an educational intervention. We propose the MSKQ as a brief instrument for clinical practice and research.

An interdisciplinary approach to evaluating the need for assistive technology reduces equipment abandonment.

Assistive technology makes up a substantial portion of the direct cost of multiple sclerosis (MS). Equipment abandonment results in the needs of the disabled individual being unmet and places stress on the resources available for the funding of such equipment. The aim of the study was to demonstrate whether an interdisciplinary approach to evaluating and prescribing assistive technology reduces equipment abandonment in persons with MS. Data concerning assistive devices acquired by patients being followed at a rehabilitation centre in northern Italy from January 1997 to December 2002, were included in the study. Through December 1999, a physician in physical medicine and rehabilitation prescribed equipment based on a recommendation from the physical therapist. From 2000 to 2002, patients were evaluated following a standardized protocol implemented by an interdisciplinary team comprised of a physical therapist, occupational therapist, physician in physical medicine and rehabilitation and psychologist. Assistive technology obtained during the study period was divided into two datasets based on the year that the aid was obtained: pre-intervention (January 1997 to December 1999) and intervention (January 2000 to December 2002). The analysis included a comparison of the two datasets on number and types of equipment abandoned, timing of abandonment and reasons why devices were abandoned. Fifty-four subjects obtained 151 assistive devices during the study period, 67 devices during pre-intervention and 84 with the intervention. The majority of devices were abandoned immediately or within the first year following obtainment in both groups. A comparison of the number of devices obtained during pre-intervention with those obtained during the intervention showed that the rate of equipment abandonment decreased significantly from 37.3 to 9.5%. An interdisciplinary approach to evaluating assistive technology needs does decrease the risk of equipment abandonment, although it does not completely solve the problem.

Certification of multiple sclerosis nurses: an international perspective.

The Multiple Sclerosis Nursing International Certification Board was formed as a special initiative of the International Organization of Multiple Sclerosis Nurses (IOMSN). The aim was to develop a certification examination for MS nursing practice. This certification should achieve the vision of the IOMSN and unite MS nurses worldwide through standard practices. Such practices are based on common knowledge and skills, and tasks that encourage the best outcome for the nurse-patient collaborative relationship. Certification allows recognition of an individual nurse's skill level, establishes a standard for all nurses treating patients with MS, improves patient care, and also benefits the neurological community. The Multiple Sclerosis Certified Nurse is revolutionary, as certification is an international effort to enhance and standardize MS care and develop MS nurse professionalism across borders.