PARADISE 24: A Measure to Assess the Impact of Brain Disorders on People's Lives

被引:27
作者
Cieza, Alarcos [1 ,2 ,3 ]
Sabariego, Carla [2 ]
Anczewska, Marta [4 ]
Ballert, Carolina [3 ]
Bickenbach, Jerome [3 ]
Cabello, Maria [5 ,6 ]
Giovannetti, Ambra [7 ]
Kaskela, Teemu [8 ]
Mellor, Blanca [5 ,6 ]
Pitkanen, Tuuli [8 ]
Quintas, Rui [7 ]
Raggi, Alberto [7 ]
Switaj, Piotr [4 ]
Chatterji, Somnath [9 ]
机构
[1] Univ Southampton, Sch Psychol, Fac Social & Human Sci, Southampton, Hants, England
[2] Univ Munich, Dept Med Informat Biometry & Epidemiol IBE, Chair Publ Hlth & Hlth Serv Res, Res Unit Biopsychosocial Hlth, Munich, Germany
[3] Swiss Parapleg Res, Nottwil, Switzerland
[4] Inst Psychiat & Neurol, Dept Psychiat, Warsaw, Poland
[5] Univ Autonoma Madrid, Inst Invest Hosp Univ La Princesa IIS IP, Ctr Invest Biomed Red Salud Mental CIBERSAM, Inst Salud Carlos III,Dept Psychiat,Psychiat Serv, E-28049 Madrid, Spain
[6] Univ Autonoma Madrid, Dept Psychiat, E-28049 Madrid, Spain
[7] IRCCS Fdn, Neurol Publ Hlth & Disabil, Sci Directorate, Neurol Inst Carlo Besta, Milan, Italy
[8] A Clin Fdn, Helsinki, Finland
[9] World Hlth Org, Multicountry Studies, Dept Measurement & Hlth Informat Syst, Geneva, Switzerland
关键词
QUALITY-OF-LIFE; GLOBAL BURDEN; RASCH MODEL; DISEASE; EQ-5D; SIZE; FIT;
D O I
10.1371/journal.pone.0132410
中图分类号
O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];
学科分类号
07 ; 0710 ; 09 ;
摘要
Objective To construct a metric of the impact of brain disorders on people's lives, based on the psychosocial difficulties (PSDs) that are experienced in common across brain disorders. Study Design Psychometric study using data from a cross-sectional study with a convenience sample of 722 persons with 9 different brain disorders interviewed in four European countries: Italy, Poland, Spain and Finland. Questions addressing 64 PSDs were first reduced based on statistical considerations, patient's perspective and clinical expertise. Rasch analyses for polytomous data were also applied. Setting In and outpatient settings. Results A valid and reliable metric with 24 items was created. The infit of all questions ranged between 0.7 and 1.3. There were no disordered thresholds. The targeting between item thresholds and persons' abilities was good and the person-separation index was 0.92. Persons' abilities were linearly transformed into a more intuitive scale ranging from zero (no PSDs) to 100 (extreme PSDs). Conclusion The metric, called PARADISE 24, is based on the hypothesis of horizontal epidemiology, which affirms that people with brain disorders commonly experience PSDs. This metric is a useful tool to carry out cardinal comparisons over time of the magnitude of the psychosocial impact of brain disorders and between persons and groups in clinical practice and research.
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页数:15
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