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2 results

  • Correlations in health status between estimates of families of people with amyotrophic lateral sclerosis and estimates of staff

  • Anneli G. Ozanne, Lennart I. Persson
  • Journal:
    Palliative & Supportive Care / Volume 11 / Issue 3 / June 2013
    Published online by Cambridge University Press:
    27 September 2012, pp. 183-189
  • Objective:

    The aim of this study was to compare self-estimates of the physical, psychological, and general well-being of patients with amyotrophic lateral sclerosis (ALS) and their next of kin with the assessment of the nurses and physician of these participants.

    Method:

    The well-being of 35 pairs of patients and their next of kin was rated by themselves, and by a physician and nurses. The well-being was examined over time, using a visual analogue scale (VAS). Patients' physical function was estimated at the same time with the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale.

    Results:

    The correlations between the staff's estimates of the well-being of patients and next of kin were similar to their own estimates, even though staff to a higher degree estimated a decrease in well-being over time among the patients. The estimates by the nurses correlated better to that of the patients and next of kin in psychological and general well-being than the physicians' estimates did.

    Significance of results:

    Even though the staff's estimates of participants were roughly equivalent to their self-estimates, there were some differences. This result calls attention to the importance of working in teams in which different professional roles are combined and integrated, making it possible to form a holistic view of the situation of each family. A concern overlooked by one member of staff might be covered by another, and different focuses on the family may give a better composite picture of their life situation, which could lead to better support to the family.

  • Chapter 23 - Neuromyelitis optica in children

  • from Section 7 - Neuromyelitis in Children
  • Edited by Dorothée Chabas, University of California, San Francisco, Emmanuelle L. Waubant, University of California, San Francisco
  • Book:
    Demyelinating Disorders of the Central Nervous System in Childhood
    Published online:
    11 April 2011
    Print publication:
    17 March 2011, pp 255-271

  • Summary

    This chapter focuses on the influence of multiple sclerosis (MS) on school and psychosocial aspects of life in children and adolescents, offering practical information about how to address potential problems. The MS has substantial impacts on the lives of those diagnosed with the disorder. Both attacks and progressive symptoms associated with MS can contribute to the net burden of disease. The Expanded Disability Status Scale (EDSS) is a tool that provides a nonlinear score based predominantly on the neurologic examination to quantify this burden. MS can affect a child's cognitive functioning, including reasoning, processing, attention span, information processing and retrieval, and other thinking abilities. Cognitive dysfunction can, in turn, impact the learning and memory and, consequently, the academic performance of children with MS. Signs of psychosocial distress in children and teens include unexplained medical complaints, poor compliance with treatment plans, school refusal, and risk-taking behaviors.