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.

Psychosocial care in advanced cancer.

In palliative care, the focus is management of major symptoms and complications, and psychosocial support of the patient and family. Approaching the end of life, the patient's needs move beyond physical care to include the psychological, social, and spiritual dimensions. The main psychosocial interventions are counseling, education, and practical services directed at the needs identified by the multidimensional/multidisciplinary assessments. We will present the roles of the various team members and methods of psychosocial assessment.

Acute care palliative medicine: psychosocial assessment of patients and primary caregivers.

This paper describes the application of an empirically-derived psychosocial assessment for use in advanced cancer. The patient population selected for this study was those patients no longer pursuing aggressive antitumour treatment, and the focus of care was on management of major symptoms and complications, and psychosocial support of the patient and family. The physical, cognitive, social and emotional dimensions were the framework for the assessment of both patient and caregiver functioning. Through this assessment of all patients admitted to our inpatient palliative medicine unit, care needs were identified and psychosocial interventions planned. The results of 150 assessments are reported, as well as observations of the process, implications for psychosocial care and modifications of the assessment based on this experience.