Development, analysis, refinement, and utility of an interdisciplinary amyotrophic lateral sclerosis database.

The current status of evaluation and management provided by individual healthcare professionals (HCP) at amyotrophic lateral sclerosis (ALS) centers and clinics needs to be analyzed. This paper describes one ALS center's experiences with the development, analysis, refinement, and utility of an interdisciplinary, HCP-driven ALS database. The purpose and conceptual framework of the database, the general data that needed to be collected, and the types of reports that needed to be generated were determined, and, in collaboration with a computer programmer, data entry and database management systems were developed. Data were collected on 234 patients between September 1996 and August 1998, and were analyzed by a biostatistician. Based on review of the biostatistician's report and discussion of problems encountered with the systems, the database was then refined. Benefits of the database system included: systematization of data collection and reporting, reduction of redundant data collection by individuals, decreased variability of evaluation methods and management decisions from patient to patient, and increased availability of a variety of uniform patient information to assist team members in making care decisions. Ongoing refinement will ensure that this HCP-driven ALS database continues to be informative, practical and effective for decision-making and enhancing delivery of care.

Spiritual well-being of the individual with amyotrophic lateral sclerosis.

BACKGROUND: A study was conducted to: (1) establish the feasibility and reliability of the Spiritual Well-Being Scale (SWBS) and its religious (RWB) and existential well-being (EWB) subscales in a sample of individuals with ALS; (2) describe the spiritual and religious practices, and spiritual well-being in these individuals; and (3) examine the relationship between spiritual well-being and quality of life. METHOD: A random sample of 60 individuals completed the SWBS at the beginning and end of an ALS clinic visit. Subjects were classified into early, middle or late stage of ALS, using vital capacity and total ALS Functional Rating Scale scores. A subsample completed the Sickness Impact Profile (SIP). RESULTS: The SWBS and its RWB and EWB subscales were found to have high internal consistency and test-retest reliability. There were no statistically significant differences in SWB, RWB or EWB scores among the three stages of ALS. RWB scores were significantly higher than EWB scores overall and within the middle and late stages. Strong negative correlations were found between physical and psychosocial dimension SIP subscores and RWB scores, suggesting that religious well-being may impact quality of life, or vice versa.