title: Developing a national quality register in end-of-life care: the Swedish experience.
abstract: BACKGROUND
  The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care.
  
  
  OBJECTIVE
  To establish, test and manage a national quality register for end-of-life care.
  
  
  METHODS
  Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online.
  
  
  METHODS
  Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities.
  
  
  RESULTS
  The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths.
  
  
  CONCLUSIONS
  We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.
authors: Stockholms Sjukhem Foundation and Karolinska Institute, Stockholm, Sweden. staffan.lundstrom@stockholmssjukhem.se
authors: Staffan
authors: S
authors: Lundström
authors: Bertil
authors: B
authors: Axelsson
authors: Per-Anders
authors: PA
authors: Heedman
authors: Greger
authors: G
authors: Fransson
authors: Carl Johan
authors: CJ
authors: Fürst
mesh_terms: D005240:Feasibility Studies; D006801:Humans; D017063:Outcome Assessment, Health Care / Q000379:methods*; D011787:Quality of Health Care; D012042:Registries; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013548:Sweden; D013727:Terminal Care / Q000592:standards*