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Inflammatory Bowel Disease: A Patient’s and Caregiver’s Perspective

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Abstract

The purpose of this study was to conduct a survey examining the impact of inflammatory bowel disease (IBD) on patients’ and their caregivers’ daily activities. Questionnaires were distributed to patients registered in the APDI (Portuguese Association for IBD) database and their respective caregivers in 2007. Of 422 patient respondents, 251 had Crohn’s disease (CD) and 171 had ulcerative colitis (UC), with the majority of patients being women (58.1%) and aged over 40 years (37.4%). The number of disease flares experienced by IBD patients was slightly higher for patients with CD than for patients with UC (2.64 vs. 2.34), and surgery was more often required in CD patients as compared to UC patients (42.4 vs. 7%). Sixty percent (60%) of patients reported having no problems with mobility, daily activities, or personal hygiene; however, over half of all patients experienced some pain and anxiety. Adult patients and children and adolescents respectively experienced time off work or school due to their disease but caregivers were not affected in this regard. The caregivers life (N = 324) was affected by anxiety, with the major concern reported as the risk of the patient developing cancer. Both IBD patients and caregivers thought that the provision of information on new drugs and contact time with a doctor would have the biggest impact on improving care. The symptoms and complications of IBD have a considerable impact on the lives of patients and their caregivers, and several actions could be taken to improve their care.

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Acknowledgments

This study was supported by a UCB grant and would not have been possible without the expertise and assistance of Dr Raquel Dezerto (UCB) and Joana Granado (UCB). The GEDII study group: Amadeu Corte Real Nunes; Ana Isabel Valente; Ana Isabel Vieira; Antónia Duarte; António Marques; Antonio Queiroz; Bernardino Ribeiro; Carolina Duesca; Celeste Fátima Viveiros; Cidalina Caetano; Claudia Sequeira; Cristina Chagas; David Horta; Edgar Gencsi; Estela Monteiro; Fernando Magro; Filipe Gomes Silva; Francisco Portela; Glória Marinho; Helder Cardoso; Helena Vasconcelos; Helena Sousa; Henrique Morna; Horácio Lopes; Isabel Bastos; Isabel Medeiros; Isabel Seves; Isadora Rosa; João Baranda; João Ramos de Deus; Jorge Amil Dias; J Godinho Lopes; João Freitas; J. Pinto de Matos; Jorge Reis; Jorge Vieira; Jose Cotter; José Estevens; JM Ribeiro; Laura Carvalho; Leopoldo Matos; Luís Correia; Luís Jasmins; Luis Lebre; Luísa Barros; Luísa Gloria; Lurdes Tavares; Marília Cravo; Margarida Marques; Marie Isabelle Cremers; Maria do Rosário Maldonado; Manuel Correia; Maria de Lurdes Gonçalves; Mário César; Miguel Areia; Manuela Ferreira; Mário Dinis Ribeiro; Mário Júlio Campos; Marta Salgado; Nuno Almeida; Paulo Andrade; Paula Lago; Paula Ministro; Paula Moura Santos; Paula Peixe; Paulo Caldeira; Paulo Freire; Pedro Martins; Raquel Gonçalves; Ricardo Ferreira; Ricardo Freire; Rui Loureiro; Rui Sousa; Rute Cerqueira; L. Salazar Sousa; Salomé Costa Lima; Sara Folgado Alberto; Silvia Leite; Sofia Mendes; Sónia Barroso; Sandra Lopes; Sónia Nobre; Tiago Bana e Costa; Vítor Fernandes.

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Authors and Affiliations

  1. GEDII – Portuguese Group of Studies of IBD, Porto, Portugal

    F. Magro, F. Portela, P. Lago, J. Deus, J. Cotter, I. Cremers, A. Vieira, P. Peixe, P. Caldeira, H. Lopes, R. Gonçalves, J. Reis, M. Cravo, L. Barros, P. Ministro, M. Lurdes Tavares, A. Duarte, M. Campos & L. Carvalho

  2. Institute of Pharmacology and Therapeutics, Faculty of Medicine, Oporto University, 4200, Porto, Portugal

    F. Magro

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  1. F. Magro
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  2. F. Portela
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  16. M. Lurdes Tavares
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  17. A. Duarte
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  18. M. Campos
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  19. L. Carvalho
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Portuguese Study Group of IBD (GEDII)

Association of Portuguese Patients with IBD (APDI)

Corresponding author

Correspondence to F. Magro.

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Magro, F., Portela, F., Lago, P. et al. Inflammatory Bowel Disease: A Patient’s and Caregiver’s Perspective. Dig Dis Sci 54, 2671–2679 (2009). https://doi.org/10.1007/s10620-008-0658-3

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  • DOI: https://doi.org/10.1007/s10620-008-0658-3

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