PARADISE 24: A measure to assess the impact of brain disorders on people's lives

Alarcos Cieza, Carla Sabariego, Marta Anczewska, Carolina Ballert, Jerome Bickenbach, Maria Cabello, Ambra Giovannetti, Teemu Kaskela, Blanca Mellor, Tuuli Pitkänen, Rui Quintas, Alberto Raggi, Piotr ͆witaj, Somnath Chatterji, Michaela Coenen, Heinrich Gall, Barbara Kollerits, Jose Luis Ayuso-Mateos, Jordi Vigil, Matilde LeonardiMilda Cerniauskaite, Venusia Covelli, Silvia Schiavolin, Mirjam Brach, Miriam Lückenkemper, Mary Baker, Alastair Benbow, Tadeusz Hawrot, Sally Hartley, Katarzyna Charzyńska, Anna Chrostek, Joanna Roszczyńska-Michta, Justyna Waszkiewicz, Carla Finocchiaro, Serena Cogoni, Antti Holopainen, Kirsi Jokela, Jonna Levola, Jouni Tourunen

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish
Article numbere0132410
JournalPLoS One
Volume10
Issue number7
DOIs
Publication statusPublished - Jul 6 2015

ASJC Scopus subject areas

  • Agricultural and Biological Sciences(all)
  • Biochemistry, Genetics and Molecular Biology(all)
  • Medicine(all)

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    Cieza, A., Sabariego, C., Anczewska, M., Ballert, C., Bickenbach, J., Cabello, M., Giovannetti, A., Kaskela, T., Mellor, B., Pitkänen, T., Quintas, R., Raggi, A., ͆witaj, P., Chatterji, S., Coenen, M., Gall, H., Kollerits, B., Ayuso-Mateos, J. L., Vigil, J., ... Tourunen, J. (2015). PARADISE 24: A measure to assess the impact of brain disorders on people's lives. PLoS One, 10(7), [e0132410]. https://doi.org/10.1371/journal.pone.0132410