Abstract
Purpose
Ulcerative colitis (UC) may cause many patients to miss out on important personal and professional opportunities. We therefore conducted a survey (UC-LIFE) to assess patients’ perceptions of the impact of UC on social and professional lives.
Patients and methods
Consecutive unselected UC patients aged ≥18 years were recruited from 38 outpatient clinics in Spain. Patients completed the survey at home, returning it by post. The survey comprised 44 multiple-choice questions, including questions about the impact of UC on social, personal, professional, and academic activities.
Results
Of 585 patients invited, 436 (75%) returned the survey (mean age 46 years; 47% women). High proportions of patients considered their disease “sometimes”, “frequently” or “mostly/always” influenced leisure activities (65.1%), recreational or professional activities (57.6%), or relationships with relatives or friends (9.9%). Patients also reported that UC influenced their decision to have children (17.2%), or their ability to take care of children (40.7%); these percentages were higher in women and in younger patients. Overall, 47.0% of patients declared that UC influenced the kind of job they performed, 20.3% had rejected a job due to UC, 14.7% had lost a job due to UC, and 19.4% had had academic problems due to UC.
Conclusion
Beyond symptoms alone, UC imposes an enormous additional burden on patients’ social, professional, and family lives. This extra burden clearly needs to be addressed so that the ultimate goal of IBD treatment – normalization of patient quality of life – can be attained by as many patients as possible.
Acknowledgments
The authors wish to thank Alejandro Pedromingo (Bioestadística, Madrid, Spain). Medical writing assistance was provided by David Murdoch and David P Figgitt PhD, ISMPP CMPP™, Content Ed Net, and funded by Merck Sharp & Dohme Spain.
The authors wish to thank the patients for their contribution in filling out printed surveys, and the following gastroenterologists (in alphabetical order) for contributing to the work by distributing surveys to patients: Dr María M Alcalde, Hospital Universitario Infanta Cristina, Badajoz; Dr Xavier Aldeguer, Hospital Universitario Doctor Josep Trueta, Gerona; Dr Federico Argüelles-Arias, Hospital Universitario Virgen Macarena, Sevilla; Dr Maite Arroyo, Hospital Universitario Lozano Blesa, Zaragoza; Dr Nelly Balza, Hospital Son Llàtzer, Mallorca; Dr Jesús Barrio, Hospital Universitario Río Hortega, Valladolid; Mrs Olga Benítez, Hospital Universitario Mútua de Terrassa, Barcelona; Dr Fernando Bermejo, Hospital Universitario de Fuenlabrada, Madrid; Dr José L Cabriada, Hospital de Galdakao,Vizcaya; Dr Xavier Calvet, Corporación Sanitaria Universitaria Parc Taulí, Barcelona; Dr Raquel Camargo, Hospital Universitario Virgen de la Victoria, Málaga; Dr Daniel Carpio, Complejo Hospitalario Universitario de Pontevedra, Pontevedra; Dr María L Castro, Hospital Universitario Virgen Macarena, Sevilla; Dr Daniel Ceballos, Hospital Universitario Doctor Negrín, Gran Canaria; Dr Cristobal de la Coba, Hospital de Cabueñes, Asturias; Dr Xavier Cortés, Hospital de Sagunto, Valencia; Dr Eugeni Domènech, Hospital Universitario Germans Trias i Pujol, Barcelona; Dr Carmen Dueñas, Hospital San Pedro de Alcántara, Cáceres; Dr María Fe García, Hospital Universitario de Elche, Alicante; Dr Santiago García, Hospital Universitario Miguel Servet, Zaragoza; Dr Valle García, Hospital Universitario Reina Sofia, Córdoba; Dr Rosario Gómez, Hospital Universitario Virgen de las Nieves, Granada; Dr Pedro González, Complejo Hospitalario La Mancha Centro, Ciudad Real; Dr Jordi Guardiola, Hospital Universitario de Bellvitge, Barcelona; Dr Álvaro Hernández, Hospital de Torrecárdenas, Almería; Dr Esteban Hernández, Hospital Universitario del Henares, Madrid; Dr José M Huguet, Consorcio Hospital General Universitario de Valencia, Valencia; Dr Antonio López-Sanromán, Hospital Universitario Ramón y Cajal, Madrid; Dr Pilar Martínez, Hospital Universitario 12 de Octubre, Madrid; Dr Teresa Martínez, Hospital Rafael Méndez, Murcia; Dr Ana Muñagorri, Hospital Universitario de Donostia, San Sebastián; Dr Concepción Muñoz, Hospital Virgen de la Salud, Toledo; Dr José F Muñoz, Hospital Clínico Universitario de Salamanca, Salamanca; Dr Héctor Pallarés, Hospital Juan Ramón Jiménez, Huelva; Dr Laura Ramos, Hospital Universitario La Laguna, Tenerife; Dr Montserrat Rivero, Hospital Universitario Marqués de Valdecilla; Cantabria; Dr Antonio Rodríguez, Hospital Clínico Universitario de Salamanca, Salamanca; Dr Cristina Rodríguez, Complejo Hospitalario de Navarra, Navarra; Dr Patricia Romero, Hospital General Universitario Santa Lucia, Murcia.
This project was financed by Merck Sharp & Dohme Spain, a subsidiary of Merck & Co, Whitehouse Station, New Jersey, USA, and is endorsed by the Spanish Association of Patients with Crohn’s Disease and Ulcerative Colitis.
Disclosure
X Calvet has served as speaker, consultant and advisor, or has received funding for research, from Merck Sharp & Dohme, AbbVie, Hospira, Pfizer, Faes Farma, Shire Pharmaceuticals, Gebro Pharma, Otsuka Pharmaceutical, and Vifor Pharma. F Argüelles-Arias has served as speaker, consultant and advisor, or has received funding for research, from Merck Sharp & Dohme, AbbVie, Takeda, Tillotts, Kern-Pharma, Faes Farma, Shire Pharmaceuticals, Gebro Pharma, and Vifor Pharma. A López-Sanromán has served as speaker, consultant or advisor for Merck Sharp & Dohme, AbbVie, Hospira, Gebro Pharma, Faes Farma, Shire Pharmaceuticals, Takeda, and Tillotts. L Cea-Calvo, B Juliá, and C Romero de Santos are full-time employees in the Medical Affairs Department, Merck Sharp & Dohme Spain. D Carpio has served as consultant to Merck Sharp & Dohme, AbbVie, Pfizer, and UCB Pharma, has received payment as speaker from Merck Sharp & Dohme, AbbVie, Pfizer, Takeda, Shire, Gebro Pharma, Tillotts, Dr Falk Pharma, and Almirall, and has been involved in clinical research with Merck Sharp & Dohme, AbbVie, and Tygenix. The authors report no other conflicts of interest in this work.