title: Adherence to online monitoring of patient-reported outcomes by patients with chronic inflammatory diseases: a feasibility study.
abstract: OBJECTIVE
  The objective of this report is to investigate the feasibility of collecting patient-reported outcomes (PROs) via e-questionnaires delivered to patients with chronic inflammatory diseases (CIDs).
  
  
  METHODS
  Consecutive outpatients with a confirmed diagnosis of systemic lupus erythematosus, primary Sjögren's syndrome or inflammatory bowel disease were followed at two medical departments. Patients received monthly e-mails containing the SF36, Hospital Anxiety and Depression scale and an analogue symptom scale over a six-month period. Participation rate, socio-demographic characteristics and patients' satisfaction were analysed.
  
  
  RESULTS
  A total of 128 patients were included (79% female; mean age: 42 ± 12 years). Eighty-two per cent of questionnaires were returned. The monthly participation rate ranged from 89% to 77%, with a six-month attrition rate of 13%. The mean completion rate of questionnaires was 98%. Factors significantly associated with increased answer rate were: married/couple status, greater number of children at home and previous participation in online surveys. The main reasons for non-response were: 'too busy to participate' (35%) and 'away from home Internet access' (31%). Overall, 68% of the participants found the study convenient and 96% agreed to continue at a monthly or bimonthly frequency.
  
  
  CONCLUSIONS
  Online home self-assessment of PROs was feasible in the setting of CIDs. Patients were satisfied and willing to continue the survey. The Internet allows immediate and sophisticated presentation of PROs to clinicians. Future studies are warranted to determine how PRO monitoring may contribute to routine care in CIDs and other diseases.
authors.affiliation: Department of Internal Medicine, Hôpital de la Croix-Rousse, University Claude Bernard, Lyon, France Department of Internal Medicine, University Hospital Dupuytren, University of Limoges, Limoges, France yvanjamilloux@hotmail.com.
authors.forename: Y
authors.initials: Y
authors.lastname: Jamilloux
authors.affiliation: Department of Hepatogastroenterology, University Hospital Dupuytren, University of Limoges, Limoges, France Department of Medical Oncology, Centre Léon Bérard, Lyon, France.
authors.forename: M
authors.initials: M
authors.lastname: Sarabi
authors.affiliation: ECSTRA Team, Epidemiology and Biostatistics, Sorbonne Paris Cité Research Centre UMR 1153, INSERM, Paris, France.
authors.forename: S
authors.initials: S
authors.lastname: Kérever
authors.affiliation: Department of Internal Medicine, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: N
authors.initials: N
authors.lastname: Boussely
authors.affiliation: Department of Hepatogastroenterology, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: A
authors.initials: A
authors.lastname: le Sidaner
authors.affiliation: Department of Hepatogastroenterology, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: V
authors.initials: V
authors.lastname: Valgueblasse
authors.affiliation: Department of Hepatogastroenterology, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: P
authors.initials: P
authors.lastname: Carrier
authors.affiliation: Department of Hepatogastroenterology, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: V
authors.initials: V
authors.lastname: Loustaud-Ratti
authors.affiliation: Department of Hepatogastroenterology, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: D
authors.initials: D
authors.lastname: Sautereau
authors.affiliation: Department of Internal Medicine, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: A L
authors.initials: AL
authors.lastname: Fauchais
authors.affiliation: Intensive Care Unit and CIC P801, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: B
authors.initials: B
authors.lastname: François
authors.affiliation: Department of Internal Medicine, University Hospital Dupuytren, University of Limoges, Limoges, France.
authors.forename: E
authors.initials: E
authors.lastname: Vidal
mesh_terms: D000328:Adult; D002908:Chronic Disease; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D007249:Inflammation / Q000175:diagnosis* / Q000473:pathology; D015212:Inflammatory Bowel Diseases / Q000175:diagnosis; D020407:Internet; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance; D010358:Patient Participation; D017060:Patient Satisfaction; D011788:Quality of Life; D012859:Sjogren's Syndrome / Q000175:diagnosis; D011795:Surveys and Questionnaires
keywords: Patient-reported outcomes; chronic inflammatory diseases; feasibility study; quality of life