OBJECTIVE: To understand how the lives of people with Crohn's disease (CD) are affected. Most research in CD has focused on symptoms and functioning rather than on how these outcomes influence quality of life (QoL). DESIGN: As part of a study to develop a CD-specific patient-reported outcome measure, qualitative interviews were conducted with patients from Manchester Royal Infirmary to determine how CD affects QoL. The needs-based model was adopted for the study. The interviews, which took the form of focused conversations covering all aspects of the impact of CD and its treatment, were audio-recorded. Theoretical thematic analysis of the transcripts identified needs affected by CD. RESULTS: Thirty patients (60% female) aged 25-68 years were interviewed. Participants had experienced CD for between 2 and 40 years. Nearly 1300 statements relating to the impact of CD were identified. Thirteen main need themes were identified: nutrition, hygiene, continence, freedom from infection, security, self-esteem, role, attractiveness, relationships, intimacy, clear-mindedness, pleasure and autonomy. CONCLUSIONS: The findings from the interviews indicate that CD has a major impact on need-fulfilment. Such issues should be addressed in CD audit, clinical trials and when evaluating clinical practice.
OBJECTIVE: To understand how the lives of people with Crohn's disease (CD) are affected. Most research in CD has focused on symptoms and functioning rather than on how these outcomes influence quality of life (QoL). DESIGN: As part of a study to develop a CD-specific patient-reported outcome measure, qualitative interviews were conducted with patients from Manchester Royal Infirmary to determine how CD affects QoL. The needs-based model was adopted for the study. The interviews, which took the form of focused conversations covering all aspects of the impact of CD and its treatment, were audio-recorded. Theoretical thematic analysis of the transcripts identified needs affected by CD. RESULTS: Thirty patients (60% female) aged 25-68 years were interviewed. Participants had experienced CD for between 2 and 40 years. Nearly 1300 statements relating to the impact of CD were identified. Thirteen main need themes were identified: nutrition, hygiene, continence, freedom from infection, security, self-esteem, role, attractiveness, relationships, intimacy, clear-mindedness, pleasure and autonomy. CONCLUSIONS: The findings from the interviews indicate that CD has a major impact on need-fulfilment. Such issues should be addressed in CD audit, clinical trials and when evaluating clinical practice.
Authors: F Casellas; J I Arenas; J S Baudet; S Fábregas; N García; J Gelabert; C Medina; I Ochotorena; M Papo; L Rodrigo; J-R Malagelada Journal: Inflamm Bowel Dis Date: 2005-05 Impact factor: 5.325
Authors: L C Doward; A Spoorenberg; S A Cook; D Whalley; P S Helliwell; L J Kay; S P McKenna; A Tennant; D van der Heijde; M A Chamberlain Journal: Ann Rheum Dis Date: 2003-01 Impact factor: 19.103
Authors: Lesley A Graff; John R Walker; Lisa Lix; Ian Clara; Patricia Rawsthorne; Linda Rogala; Norine Miller; Laura Jakul; Cory McPhail; Jason Ediger; Charles N Bernstein Journal: Clin Gastroenterol Hepatol Date: 2006-12 Impact factor: 11.382
Authors: Jennifer L Jones; Geoffrey C Nguyen; Eric I Benchimol; Charles N Bernstein; Alain Bitton; Gilaad G Kaplan; Sanjay K Murthy; Kate Lee; Jane Cooke-Lauder; Anthony R Otley Journal: J Can Assoc Gastroenterol Date: 2018-11-02
Authors: Amir Nazarian; Kirles Bishay; Reza Gholami; Michael A Scaffidi; Rishad Khan; Daniel Cohen-Lyons; Nadia Griller; Joshua B Satchwell; Jeffrey P Baker; Samir C Grover; Elizabeth Jan Irvine Journal: J Can Assoc Gastroenterol Date: 2020-05-16
Authors: Alice Heaney; Jeanette Wilburn; Shannon Langmead; Jaishri Blakeley; Susan Huson; Carly Jim; Stephen P McKenna Journal: SAGE Open Med Date: 2019-02-11