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Search: WFRF:(Alday Luis) > (2015-2019) > Assessment of Patte...

  • Apers, Silke (author)

Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) : Rationale, design, and methods

  • Article/chapterEnglish2015

Publisher, publication year, extent ...

  • Elsevier BV,2015
  • printrdacarrier

Numbers

  • LIBRIS-ID:oai:DiVA.org:umu-99212
  • https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-99212URI
  • https://doi.org/10.1016/j.ijcard.2014.11.084DOI
  • https://gup.ub.gu.se/publication/208088URI

Supplementary language notes

  • Language:English
  • Summary in:English

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  • Subject category:ref swepub-contenttype
  • Subject category:art swepub-publicationtype

Notes

  • Background: Data on patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) are inconsistent and vary across the world. Better understanding of PROs and their differences across cultural and geographic barriers can best be accomplished via international studies using uniform research methods. The APPROACH-IS consortium (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study) was created for this purpose and investigates PROs in adults with CHD worldwide. This paper outlines the project rationale, design, and methods. Methods/design: APPROACH-IS is a cross-sectional study. The goal is to recruit 3500-4000 adults with CHD from 15 countries in five major regions of the world (Asia, Australia, Europe, North and South America). Self-report questionnaires are administered to capture information on PRO domains: (i) perceived health status (12-item Short-form Health Survey & EuroQOL-5D); (ii) psychological functioning (Hospital Anxiety and Depression Scale); (iii) health behaviors (Health-Behavior Scale-Congenital Heart Disease); and (iv) quality of life (Linear Analog Scale & Satisfaction With Life Scale). Additionally, potential explanatory variables are assessed: (i) socio-demographic variables; (ii) medical history (chart review); (iii) sense of coherence (Orientation to Life Questionnaire); and (iv) illness perceptions (Brief Illness Perception Questionnaire). Descriptive analyses and multilevel models will examine differences in PROs and investigate potential explanatory variables. Discussion: APPROACH-IS represents a global effort to increase research understanding and capacity in the field of CHD, and will have major implications for patient care. Results will generate valuable information for developing interventions to optimize patients' health and well-being. 

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  • Kovacs, Adrienne H. (author)
  • Luyckx, Koen (author)
  • Alday, Luis (author)
  • Berghammer, Malin,1970Gothenburg University,Göteborgs universitet,Institutionen för medicin,Institute of Medicine(Swepub:gu)xbmalq (author)
  • Budts, Werner (author)
  • Callus, Edward (author)
  • Caruana, Maryanne (author)
  • Chidambarathanu, Shanthi (author)
  • Cook, Stephen C. (author)
  • Dellborg, Mikael,1954Gothenburg University,Göteborgs universitet,Institutionen för medicin, avdelningen för molekylär och klinisk medicin,Institute of Medicine, Department of Molecular and Clinical Medicine(Swepub:gu)xdelmi (author)
  • Enomoto, Junko (author)
  • Eriksen, Katrine (author)
  • Fernandes, Susan M. (author)
  • Jackson, Jamie L. (author)
  • Johansson, BengtUmeå universitet,Medicin(Swepub:umu)bejo0003 (author)
  • Khairy, Paul (author)
  • Kutty, Shelby (author)
  • Menahem, Samuel (author)
  • Rempel, Gwen (author)
  • Sluman, Maayke A. (author)
  • Soufi, Alexandra (author)
  • Thomet, Corina (author)
  • Veldtman, Gruschen (author)
  • Wang, Jou-Kou (author)
  • White, Kamila (author)
  • Moons, Philip,1968Gothenburg University,Göteborgs universitet,Institutionen för medicin,Institute of Medicine(Swepub:gu)xmooph (author)
  • Göteborgs universitetInstitutionen för medicin (creator_code:org_t)

Related titles

  • In:International Journal of Cardiology: Elsevier BV179, s. 334-3420167-52731874-1754

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