Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needs
Abstract Background Up to 30% of patients with ulcerative colitis will undergo surgery resulting in an ileal pouch-anal anastomosis (IPAA) or permanent end ileostomy (EI). We aimed to understand how patients decide between these two options. Methods We performed semi-structured interviews with ulcer...
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| Format: | Article |
| Language: | English |
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BMC
2021-09-01
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| Series: | BMC Gastroenterology |
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| Online Access: | https://doi.org/10.1186/s12876-021-01916-0 |
| _version_ | 1818624456042479616 |
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| author | Jessica N. Cohan Elissa M. Ozanne Rebecca K. Hofer Yvonne M. Kelly Anna Kata Craig Larsen Emily Finlayson |
| author_facet | Jessica N. Cohan Elissa M. Ozanne Rebecca K. Hofer Yvonne M. Kelly Anna Kata Craig Larsen Emily Finlayson |
| author_sort | Jessica N. Cohan |
| collection | DOAJ |
| description | Abstract Background Up to 30% of patients with ulcerative colitis will undergo surgery resulting in an ileal pouch-anal anastomosis (IPAA) or permanent end ileostomy (EI). We aimed to understand how patients decide between these two options. Methods We performed semi-structured interviews with ulcerative colitis patients who underwent surgery. Areas of questioning included the degree to which patients participated in decision-making, challenges experienced, and suggestions for improving the decision-making process. We analyzed the data using a directed content and thematic approach. Results We interviewed 16 patients ranging in age from 28 to 68 years. Nine were male, 10 underwent IPAA, and 6 underwent EI. When it came to participation in decision-making, 11 patients felt independently responsible for decision-making, 3 shared decision-making with the surgeon, and 2 experienced surgeon-led decision-making. Themes regarding challenges during decision-making included lack of support from family, lack of time to discuss options with the surgeon, and the overwhelming complexity of the decision. Themes for ways to improve decision-making included the need for additional information, the desire for peer education, and earlier consultation with a surgeon. Only 3 patients were content with the information used to decide about surgery. Conclusions Patients with ulcerative colitis who need surgery largely experience independence when deciding between IPAA and EI, but struggle with inadequate educational information and social support. Patients may benefit from early access to surgeons and peer guidance to enhance independence in decision-making. Preoperative educational materials describing surgical complications and postoperative lifestyle could improve decision-making and facilitate discussions with loved ones. |
| first_indexed | 2024-12-16T18:57:14Z |
| format | Article |
| id | doaj.art-f2c660246fa7402d8c341455b3e10970 |
| institution | Directory Open Access Journal |
| issn | 1471-230X |
| language | English |
| last_indexed | 2024-12-16T18:57:14Z |
| publishDate | 2021-09-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Gastroenterology |
| spelling | doaj.art-f2c660246fa7402d8c341455b3e109702022-12-21T22:20:30ZengBMCBMC Gastroenterology1471-230X2021-09-012111810.1186/s12876-021-01916-0Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needsJessica N. Cohan0Elissa M. Ozanne1Rebecca K. Hofer2Yvonne M. Kelly3Anna Kata4Craig Larsen5Emily Finlayson6Department of Surgery, University of UtahDepartment of Population Health Sciences, University of UtahDepartment of Family and Community Medicine, University of CaliforniaDepartment of Surgery, University of CaliforniaDepartment of Surgery, Medstar Georgetown University HospitalDepartment of Surgery, New York Presbyterian-QueensDepartment of Surgery, University of CaliforniaAbstract Background Up to 30% of patients with ulcerative colitis will undergo surgery resulting in an ileal pouch-anal anastomosis (IPAA) or permanent end ileostomy (EI). We aimed to understand how patients decide between these two options. Methods We performed semi-structured interviews with ulcerative colitis patients who underwent surgery. Areas of questioning included the degree to which patients participated in decision-making, challenges experienced, and suggestions for improving the decision-making process. We analyzed the data using a directed content and thematic approach. Results We interviewed 16 patients ranging in age from 28 to 68 years. Nine were male, 10 underwent IPAA, and 6 underwent EI. When it came to participation in decision-making, 11 patients felt independently responsible for decision-making, 3 shared decision-making with the surgeon, and 2 experienced surgeon-led decision-making. Themes regarding challenges during decision-making included lack of support from family, lack of time to discuss options with the surgeon, and the overwhelming complexity of the decision. Themes for ways to improve decision-making included the need for additional information, the desire for peer education, and earlier consultation with a surgeon. Only 3 patients were content with the information used to decide about surgery. Conclusions Patients with ulcerative colitis who need surgery largely experience independence when deciding between IPAA and EI, but struggle with inadequate educational information and social support. Patients may benefit from early access to surgeons and peer guidance to enhance independence in decision-making. Preoperative educational materials describing surgical complications and postoperative lifestyle could improve decision-making and facilitate discussions with loved ones.https://doi.org/10.1186/s12876-021-01916-0Ulcerative colitisShared decision makingIleal pouch-anal anastomosisIleostomyQualitative research |
| spellingShingle | Jessica N. Cohan Elissa M. Ozanne Rebecca K. Hofer Yvonne M. Kelly Anna Kata Craig Larsen Emily Finlayson Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needs BMC Gastroenterology Ulcerative colitis Shared decision making Ileal pouch-anal anastomosis Ileostomy Qualitative research |
| title | Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needs |
| title_full | Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needs |
| title_fullStr | Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needs |
| title_full_unstemmed | Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needs |
| title_short | Ileostomy or ileal pouch-anal anastomosis for ulcerative colitis: patient participation and decisional needs |
| title_sort | ileostomy or ileal pouch anal anastomosis for ulcerative colitis patient participation and decisional needs |
| topic | Ulcerative colitis Shared decision making Ileal pouch-anal anastomosis Ileostomy Qualitative research |
| url | https://doi.org/10.1186/s12876-021-01916-0 |
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