title: Development and preliminary validation of the pancreatic cancer disease impact score.
abstract: OBJECTIVE
  Patient-reported outcomes are important for clinical practice and research, and should reflect what patients perceive as important. The objective of this study was to develop and preliminarily validate a brief, patient-derived, disease-specific tool, the pancreatic cancer disease impact (PACADI) score.
  
  
  METHODS
  The development was performed in two phases. Forty-one patients with confirmed pancreatic cancer (PC) selected dimensions of health related to the impact of the disease. A weighting of the eight most frequently reported dimensions was performed in a second sample of 80 PC patients who also rated the impact on eight numeric rating scales (NRS, range 0 to 10). The relative weights and the scores from the NRS were used to compute the PACADI score (range 0 to 10). The patients also completed Edmonton Symptom Assessment System (ESAS) and EQ-5D.
  
  
  RESULTS
  Dimensions reported by more than 20% of the patients were included in the PACADI score (relative weights in parenthesis): pain/discomfort (0.16), fatigue (0.16), anxiety (0.15), bowel/digestive problems (0.14), loss of appetite (0.13), dry mouth (0.11), itchiness (0.08), and nausea (0.07). The PACADI score in the 80 PC patients had a mean (SD) value of 3.26 (2.06) (95% CI 2.80, 3.71), was moderately to strongly correlated to ESAS sense of well-being (r = 0.69) and EQ-5D (r = -0.52), and discriminated significantly between patients with and without PC.
  
  
  CONCLUSIONS
  The PACADI score is a new eight-item, patient-derived, disease-specific measure. Preliminary validation regarding construct validity and discrimination encourages further validation in independent patient samples.
authors: Division of Cancer, Surgery and Transplantation, Oslo University Hospital, P.O. Box 4956, Oslo, 0424, Norway. Turid.Heiberg@ldh.no
authors: Turid
authors: T
authors: Heiberg
authors: Tom
authors: T
authors: Nordby
authors: Tore K
authors: TK
authors: Kvien
authors: Trond
authors: T
authors: Buanes
mesh_terms: D000368:Aged; D001007:Anxiety / Q000209:etiology / Q000523:psychology; D001172:Arthritis, Rheumatoid / Q000150:complications / Q000503:physiopathology / Q000523:psychology; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005221:Fatigue / Q000209:etiology* / Q000503:physiopathology / Q000523:psychology; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009325:Nausea / Q000209:etiology* / Q000503:physiopathology / Q000523:psychology; D010146:Pain / Q000209:etiology* / Q000503:physiopathology / Q000523:psychology; D010147:Pain Measurement; D010190:Pancreatic Neoplasms / Q000150:complications* / Q000503:physiopathology / Q000523:psychology; D011594:Psychometrics / Q000592:standards; D011788:Quality of Life; D057566:Self Report / Q000592:standards*; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires / Q000592:standards