The Informational Needs and Preferences of Patients Considering Surgery for Ulcerative Colitis: Results of a Qualitative Study

Baker, D.; Lee, MJ; Jones, Georgina; Brown, S. R.; Lobo, AJ

doi:10.1093/ibd/izx026

Cited by 24 publications

(42 citation statements)

References 34 publications

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“…This could be complemented by the addition of written information, which is also favoured by many respondents. Findings from this study are similar to the lower preference for online material expressed in other related conditions [23].…”

Section: Discussionsupporting

confidence: 88%

Survey to define informational needs of patients undergoing surgery for Crohn’s anal fistula

et al. 2020

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Aim There are many surgical treatments used in Crohn's anal fistula, although none is perfect. Decisions about surgery in this condition may be preference sensitive. The aim of this study was to identify what information patients would like in order to make treatment decisions and to explore experiences of making decisions in this setting. Method A survey was designed based upon qualitative interviews and input from patients and clinicians. It included a long list of informational items to be ranked on a scale of importance, a control preference scale, the decision regret scale, and items exploring preferred information formats. This was distributed through 10 English hospitals to patients with recent surgical treatment for Crohn's anal fistula. Results were analysed using principal component analysis, to identify key informational needs, and other appropriate descriptive statistics. Results In total 92 questionnaires were returned (response rate 41.8%); 48 (52.5%) respondents were women and 54 (58.7%) had undergone seton insertion. Principal component analysis identified three information needs: wound and aftercare, effect on perianal symptoms, severity of surgery. Decision‐making preferences showed a desire to participate in decision‐making. Median decision regret score was 25/100 (i.e., low). The preferred format for sharing information to support decision‐making was from the surgeon, 80/92 (87.0%), and from a booklet, 58/92 (63.0%). Conclusion Key informational needs in this condition are wound and after care, effect on perianal symptoms, and severity of surgery. Patients would like this information to help engage in shared decision‐making.

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Section: Discussionsupporting

confidence: 88%

Survey to define informational needs of patients undergoing surgery for Crohn’s anal fistula

et al. 2020

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“…This could have been the reason why 28 patients declined to participate, although we accept that it may also reflect discomfort with the topic, dissatisfaction with clinical care or practical issues such as time off work, as well as a lack of desire to participate . Despite this, the sample size is comparable to that in similar studies .…”

Section: Discussionmentioning

confidence: 86%

The informational and decisional preferences of patients undergoing surgery for Crohn’s anal fistula: a qualitative study

et al. 2020

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Aim One in three patients with Crohn’s disease will develop a perianal fistula, but only a few achieve long‐term healing. Treatment is both medical and surgical. Since there is no ‘best’ surgical procedure, patient preference is important in selecting the appropriate treatment for this condition. The aim of this study was to investigate the informational and decisional preferences of patients when surgical treatment is being considered. Method Patients who had undergone surgery for Crohn's anal fistula underwent face‐to‐face semi‐structured interviews. These explored the experience of treatments for fistula, of receiving information and of participation in decision‐making. Transcripts were analysed by two investigators through inductive thematic analysis. Saturation was assessed for at 12 interviews and then after each subsequent interview. Results Seventeen patients completed interviews, and saturation was achieved. Five themes were identified, of which two (desired information and decision‐making) were relevant to this study. Other themes included experience of Crohn’s disease, experience of receiving information and procedure‐specific comments. Participants wanted to have information on any risks, high‐level outcomes (e.g. success), impact on day‐to‐day life and aftercare. Participants felt they did not always receive the information they needed to select the best treatment option. Participants felt uninvolved in treatment decisions and would have liked to trade off operations to reach their treatment goal. Conclusion Information provided to patients about surgical treatment of Crohn’s perianal fistula does not meet their needs. Clinicians should address aftercare, impact on quality of life and the risks and benefits of the any proposed procedure.

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“…The primary outcome was QoL, as previous work by this group illustrated this as the preferred patient informational preference preoperatively [19]. Secondary outcomes were early and late surgical complications as defined by the individual study (a method used previously in systematic reviews for UC [11]) as well as functional outcomes after surgery.…”

Section: Methodsmentioning

confidence: 99%

A systematic review and meta‐analysis of outcomes after elective surgery for ulcerative colitis

et al. 2020

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Aim Approximately 20%–30% of patients with ulcerative colitis (UC) will undergo surgery during their disease course, the vast majority being elective due to chronic refractory disease. The risks of elective surgery are reported variably. The aim of this systematic review and meta‐analysis is to summarize the outcomes after elective surgery for UC. Methods A systematic review was conducted that analysed studies reporting outcomes for elective surgery in the modern era (>2002). It was prospectively registered on the PROSPERO database (ref: CRD42018115513). Searches were performed of Embase and MEDLINE on 15 January 2019. Outcomes were split by operation performed. Primary outcome was quality of life; secondary outcomes were early, late and functional outcomes after surgery. Outcomes reported in five or more studies underwent a meta‐analysis of incidence using random effects. Heterogeneity is reported with I2, and publication bias was assessed using Doi plots and the Luis Furuya‐Kanamori index. Results A total of 34 studies were included (11 774 patients). Quality of life was reported in 12 studies, with variable and contrasting results. Thirteen outcomes (eight early surgical complications, five functional outcomes) were included in the formal meta‐analysis, all of which were outcomes for ileal pouch–anal anastomosis (IPAA). A further 71 outcomes were reported (50 IPAA, 21 end ileostomy). Only 14 of 84 outcomes received formal definitions, with high inter‐study variation of definitions. Conclusion Outcomes after elective surgery for UC are variably defined. This systematic review and meta‐analysis highlights the range of reported incidences and provides practical information that facilitates shared decision making in clinical practice.

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The Informational Needs and Preferences of Patients Considering Surgery for Ulcerative Colitis: Results of a Qualitative Study

Abstract: Current preoperative information does not address patient informational needs. Surgical consultations should be adapted to suit patient preferences. Clinical practice may need to be altered to ensure that patients are better supported following surgery.

Cited by 24 publications

References 34 publications

Survey to define informational needs of patients undergoing surgery for Crohn’s anal fistula

Survey to define informational needs of patients undergoing surgery for Crohn’s anal fistula

The informational and decisional preferences of patients undergoing surgery for Crohn’s anal fistula: a qualitative study

A systematic review and meta‐analysis of outcomes after elective surgery for ulcerative colitis

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