title: Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin.
abstract: OBJECTIVE
  The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time.
  
  
  METHODS
  35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times.
  
  
  RESULTS
  Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction.
  
  
  CONCLUSIONS
  There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation.
authors.affiliation: Department of Neurology, Institute of Clinical Neuroscience and Institute of Neuroscience and Physiology, Sahlgrenska University Hospital, Göteborg, Sweden. anneli.g.olsson@vgregion.se
authors.forename: Anneli G
authors.initials: AG
authors.lastname: Olsson
authors.forename: Inga
authors.initials: I
authors.lastname: Markhede
authors.forename: Susann
authors.initials: S
authors.lastname: Strang
authors.forename: Lennart I
authors.initials: LI
authors.lastname: Persson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology / Q000523:psychology*; D001008:Anxiety Disorders / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology; D003865:Major Depressive Disorder / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology; D039721:Diagnostic and Statistical Manual of Mental Disorders; D005190:Family / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D012720:Severity of Illness Index; D012944:Social Support