title: Patients' experiences and perceptions of living with coeliac disease - implications for optimizing care.
abstract: OBJECTIVE
  Little is known regarding the impact of coeliac disease on daily living from patients' own viewpoints. The aim of the study was to investigate patients' perceptions of their disease, dietary treatment and self-rated healthcare needs.
  
  
  METHODS
  This prospective study involved 698 newly detected adult coeliac disease patients diagnosed due to classical abdominal symptoms, extraintestinal symptoms or active screening in at-risk groups. Participants were asked about their experiences of living with coeliac disease and of adopting a gluten-free diet, as well as their disease-related needs at diagnosis and after one year on treatment.
  
  
  RESULTS
  All patients were equally satisfied that they had been diagnosed with coeliac disease irrespective of initial clinical presentation. However, young patients and those with extraintestinal symptoms or asymptomatic and detected by screening in at-risk groups rated the impact on daily living of the disease and adherence to a gluten-free diet with significantly more disapproval than those with classical symptoms. The former groups clarify also reported dietary lapses and a negative attitude to the disease more frequently. Negative perceptions were associated with dissatisfaction with the quality of doctor-patient communication and younger age at diagnosis.
  
  
  CONCLUSIONS
  Established doctor-patient communication is essential in minimizing the disease burden. Particularly young and screen-detected asymptomatic patients and those with extraintestinal manifestations require extensive support.
authors.affiliation: School of Medicine, University of Tampere and Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Finland.
authors.forename: Anniina
authors.initials: A
authors.lastname: Ukkola
authors.forename: Markku
authors.initials: M
authors.lastname: Mäki
authors.forename: Kalle
authors.initials: K
authors.lastname: Kurppa
authors.forename: Pekka
authors.initials: P
authors.lastname: Collin
authors.forename: Heini
authors.initials: H
authors.lastname: Huhtala
authors.forename: Leila
authors.initials: L
authors.lastname: Kekkonen
authors.forename: Katri
authors.initials: K
authors.lastname: Kaukinen
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D002446:Celiac Disease / Q000175:diagnosis / Q000178:diet therapy / Q000523:psychology*; D055050:Diet, Gluten-Free; D005260:Female; D005387:Finland; D005500:Follow-Up Studies; D006301:Health Services Needs and Demand; D006306:Health Surveys; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D011446:Prospective Studies; D057566:Self Report; D055815:Young Adult