title: Self-Rated and Caregiver-Rated Quality of Life in Alzheimer Disease with a Focus on Evolving Patient Ability to Respond to Questionnaires: 5-Year Prospective ALSOVA Cohort Study.
abstract: OBJECTIVE
  To examine and compare self-rated and caregiver-rated measures of quality of life (QoL) in relation to disease progression in patients with very mild or mild Alzheimer disease (AD) and at what disease stage patient's ability to respond to QoL questionnaires with or without assistance begins to diminish.
  
  
  METHODS
  236 patients with very mild or mild AD and their family caregivers from three Finnish hospital districts participated in this prospective, longitudinal study with 5 years of follow-up. Three patient-reported instruments were used to assess QoL (the generic 15D, the Quality of Life in Alzheimer Disease [QoL-AD] questionnaire, and a visual analogue scale) as well as one caregiver-rated assessment of patient QoL (QoL-AD). AD severity was evaluated with the Clinical Dementia Rating Scale - Sum of Boxes (CDR-SOB).
  
  
  RESULTS
  All self- and caregiver-rated QoL estimates correlated with AD severity. The self- and caregiver-rated QoL scores began to diverge even with very mild cognitive impairment after CDR-SOB reached 4, the value that corresponds with a Mini-Mental State Examination (MMSE) score of 25-30. Patients also began to need assistance in responding to questionnaires at very early stages of AD (CDR-SOB score: 4-6). Furthermore, their ability to respond to QoL questionnaires with or without assistance declined after CDR-SOB reached 11 points, a value that correlates with an early moderate stage of AD and MMSE score of 11-20.
  
  
  CONCLUSIONS
  AD patients' self-rated QoL ratings are much more insensitive to disease progression than caregiver ratings.
authors.affiliation: Institute of Clinical Medicine, Department of Neurology, School of Medicine, University of Eastern Finland, Kuopio, Finland; Department of Geriatrics, University of Eastern Finland, Kuopio, Finland. Electronic address: kristiina.hongisto@uef.fi.
authors.forename: Kristiina
authors.initials: K
authors.lastname: Hongisto
authors.affiliation: Institute of Clinical Medicine, Department of Neurology, School of Medicine, University of Eastern Finland, Kuopio, Finland; Pharmacoeconomics & Outcomes Research Unit, University of Eastern Finland, Kuopio, Finland.
authors.forename: Saku
authors.initials: S
authors.lastname: Väätäinen
authors.affiliation: Pharmacoeconomics & Outcomes Research Unit, University of Eastern Finland, Kuopio, Finland.
authors.forename: Janne
authors.initials: J
authors.lastname: Martikainen
authors.affiliation: Institute of Clinical Medicine, Department of Neurology, School of Medicine, University of Eastern Finland, Kuopio, Finland; School of Educational Sciences and Psychology, University of Eastern Finland, Kuopio, Finland.
authors.forename: Ilona
authors.initials: I
authors.lastname: Hallikainen
authors.affiliation: Department of Nursing Science, University of Eastern Finland, Kuopio, Finland; Development, Clinical Education and Research Unit of Nursing, Kuopio University Hospital, Kuopio, Finland.
authors.forename: Tarja
authors.initials: T
authors.lastname: Välimäki
authors.affiliation: Kuopio Research Centre of Geriatric Care, School of Pharmacy, the Institute of Public Health and Clinical Nutrition, University of Eastern Finland, Kuopio, Finland.
authors.forename: Sirpa
authors.initials: S
authors.lastname: Hartikainen
authors.affiliation: Department of Neurology, Al-Ahli Hospital, Doha, Qatar.
authors.forename: Jaana
authors.initials: J
authors.lastname: Suhonen
authors.affiliation: Institute of Clinical Medicine, Department of Neurology, School of Medicine, University of Eastern Finland, Kuopio, Finland; NeuroCentre, Department of Neurology, Kuopio University Hospital, Kuopio, Finland.
authors.forename: Anne M
authors.initials: AM
authors.lastname: Koivisto
mesh_terms: D000368:Aged; D000544:Alzheimer Disease / Q000523:psychology*; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D015331:Cohort Studies; D006801:Humans; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D057566:Self Report; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
keywords: Alzheimer disease; cohort study; quality of life