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Perceived Emotional and Psychological Impact of Ulcerative Colitis on Outpatients in Spain: UC-LIFE Survey

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Abstract

Background

Ulcerative colitis (UC) negatively impacts patients’ health-related quality of life (HRQoL).

Aim

The UC-LIFE survey aimed to evaluate the perceived everyday and emotional impact of UC on patients attending outpatient clinics in Spain and explored patient–physician communication.

Methods

Gastroenterologists handed the survey to consecutive unselected UC patients aged ≥18 years. Patients described their perception on the burden of symptoms and disease severity, social and emotional impact of UC on everyday life, disease knowledge and sources of information about the disease, and patient–physician communication.

Results

A total of 585 patients received the survey, and 436 returned it (74.5% response rate; mean age 46 years, 53% men). Most patients perceived that UC prevented them from leading a normal life (79.3%) and impaired sleep quality (76.1%). Most patients described an emotional impact due to UC, mainly feelings of depression and anxiety, and some 38% perceived that UC decreased their self-confidence. Despite most patients believing that their physician listened/asked about UC symptoms, many perceived that emotional/psychological support was lacking.

Conclusions

Findings support the need for a more patient-centered approach to the care of UC patients, to include psychological, emotional, and social aspects. Improved patient–physician communication would be beneficial and may contribute to better HRQoL in UC patients.

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Acknowledgements

The UC-LIFE survey was promoted and financed by Merck Sharp & Dohme, Spain, a subsidiary of Merck & Co, Whitehouse Station, New Jersey, USA, and endorsed by the Spanish Confederation of Associations of Crohn’s Disease and Ulcerative Colitis (ACCU). The statistical analysis was performed by Alejandro Pedromingo (Bio-estadistica.com). Medical writing assistance was provided by David P. Figgitt PhD, Content Ed Net, with funding from Merck Sharp & Dohme, Spain. The authors would like to thank the patients for their contribution to the study by completing the printed UC-LIFE surveys. The following healthcare professionals contributed to the work by handing the survey to their patients (in alphabetical order): 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. 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. Ainhoa Rodríguez-Pescador, Hospital de Galdakao, Vizcaya and Dr. Patricia Romero, Hospital General Universitario Santa Lucia, Murcia.

Funding

This project was funded by Merck Sharp & Dohme, Spain, a subsidiary of Merck & Co, Whitehouse Station, New Jersey, USA, and supported by the Spanish Confederation of Associations of Crohn’s Disease and Ulcerative Colitis (ACCU; www.accuesp.com.es).

Author information

Authors and Affiliations

  1. Head Gastroenterology Division, Gastroenterology and Hepatology Department, Hospital Ramón y Cajal, Madrid, Spain

    Antonio López-Sanromán

  2. Gastroenterology Department, Complexo Hospitalario Universitario de Pontevedra, Instituto de Investigación Biomedica (IBI), SERGAS, Pontevedra, Spain

    Daniel Carpio

  3. Departament de Medicina, Universitat Autònoma de Barcelona, Barcelona, Spain

    Xavier Calvet

  4. Unitat de Malalties Digestives, Corporació Sanitaria Universitària Parc Taulí, Sabadell, Spain

    Xavier Calvet

  5. Centro de Investigación Biomédica en Red de enfermedades hepáticas y digestivas (CIBERehd), Madrid, Spain

    Xavier Calvet

  6. Medical Affairs Department, Merck Sharp & Dohme Spain, Josefa Valcárcel 38, 28027, Madrid, Spain

    Cristina Romero, Luis Cea-Calvo & Berta Juliá

  7. UGC Digestivo Intercentros, Hospitales Virgen Macarena-Rocío, Seville, Spain

    Federico Argüelles-Arias

Authors
  1. Antonio López-Sanromán
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  2. Daniel Carpio
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  5. Luis Cea-Calvo
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  7. Federico Argüelles-Arias
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Corresponding author

Correspondence to Cristina Romero.

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Conflict of interest

A. López-Sanromán has served as a speaker, a consultant, or an advisor for Merck Sharp & Dohme, AbbVie, Hospira, Gebro Pharma, Faes Farma, Shire Pharmaceuticals, Takeda and Tillotts. D. Carpio has served as a consultant to Merck Sharp & Dohme, AbbVie, Pfizer and UCB Pharma; has received lecture fees 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. X. Calvet has served as a speaker, a consultant, and advisory member for, or has received research funding from, Merck Sharp & Dohme, AbbVie, Hospira, Pfizer, Faes Farma, Shire Pharmaceuticals, Gebro Pharma, Otsuka Pharmaceutical and Vifor Pharma. F. Argüelles-Arias has served as a speaker, a consultant, and advisory member for, or has received research funding from, Merck Sharp & Dohme, AbbVie, Takeda, Tillotts, Kern-Pharma, Faes Farma, Shire Pharmaceuticals, Gebro Pharma and Vifor Pharma. C. Romero, B. Julia, and L. Cea-Calvo are full-time employees in the Medical Affairs Department, Merck Sharp & Dohme, Spain.

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López-Sanromán, A., Carpio, D., Calvet, X. et al. Perceived Emotional and Psychological Impact of Ulcerative Colitis on Outpatients in Spain: UC-LIFE Survey. Dig Dis Sci 62, 207–216 (2017). https://doi.org/10.1007/s10620-016-4363-3

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  • DOI: https://doi.org/10.1007/s10620-016-4363-3

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