Provision of dietary advice for people with an ileostomy: a survey in the UK and Ireland

The aim was to explore whether people with an ileostomy in the UK and Ireland receive the dietary advice they require.


Introduction
In the UK, > 21 000 people have surgery to create a stoma annually [1]. Ileostomies are a type of stoma creating a diversion of the gastrointestinal tract from the ileum through an opening in the abdomen. Common complications include high stoma output and blockage, and unpleasant symptoms such as wind and odour [2,3]. Dietary advice may be provided to help manage these issues [4]. Common recommendations are to avoid specific fruit, nuts and vegetables high in insoluble fibre, to prevent obstruction [5]. A diet high in white, starchy carbohydrates and low in fibre is recommended to thicken loose output [4,6]. Lists of foods and drinks that may cause wind and odour are often provided [7]. People with an ileostomy frequently modify their diet and report that dietary implications of their ileostomy affect daily life [8][9][10]. Unfortunately, although dietary advice is important to ileostomists [11], evidence to inform practice is limited [12] and what may be problematic for some may pose no or little issue for others [2].
A qualitative study of six people with an ileostomy and Crohn's disease in the UK suggested dietary advice was insufficient, could be confusing or conflicting, and advice varied between health professions [10]. In a Swedish survey of ostomy patients' perceptions of quality of care, 95% of ileostomists believed information on diet was important; however, 36% (14/39) said information received was not satisfactory [11]. More recently, a survey of 425 ostomates (ileostomy, colostomy or urostomy) in the UK reported that 67% received information, advice or support about diet after stoma surgery, while 30% did not but would have liked to [13]. Of those who received dietary advice, 82% found this useful. The results were not reported separately by stoma type. Studies to date suggest improvement is needed in the provision of dietary advice to people with an ileostomy, but details of where dietary advice comes from, how it is provided and the extent to which patient need is unmet have not yet been described.
The aims of this study were to explore (i) the proportion of ileostomists who received dietary advice for ileostomy management; (ii) source(s) of advice; (iii) attitudes towards advice; and (iv) perceived need for dietary advice.

Method
An online multiple-choice survey was developed in collaboration with healthcare professionals (HCPs) and people with an ileostomy (Appendix S1). A draft questionnaire was created by the authors, including two dietitians, and sent to a colorectal surgeon, stoma nurse and dietitian for feedback on content and wording. The revised questionnaire was put into an online format and three members of a patient and public involvement (PPI) group, who all had an ileostomy, took part in cognitive interviews with AM to assess and increase the face validity of the questions [14]. PPI members spoke out loud their thoughts while completing the survey, and AM asked probing questions to gain further insight. As well as cognitive interviews, PPI members were asked for their views on the relevance of questions and important aspects they felt were not captured. Based on the first two interviews, the wording and layout of several questions were changed to increase clarity, additional response options were provided for some questions, and questions were added to ensure all important experiences in relation to dietary advice were captured. The updated survey was used in the third interview and only a few minor changes were made after this.
The cross-sectional survey was administered using Online Surveys (https://www.onlinesurveys.ac.uk). The survey link was available on the websites of the Ileostomy and Internal Pouch Association (November 2018-December 2019) and Crohn's and Colitis UK (September 2019-December 2019). The open survey was promoted on social media inviting eligible people to participate. Eligibility criteria were age ≥ 16 years and current ileostomy. Responses from outside the UK and Ireland were excluded. The first page provided participant information and stated that continuing to the following pages would be taken as agreement to participate. Where appropriate, survey items were mandatory. Questions relating to dietary advice received were only displayed if the participant responded 'yes' when asked if they had received dietary advice. Respondents were able to review and change responses prior to submission.
A convenience sample anonymously responded to the survey. Responses were downloaded to IBM SPSS v24.0 (IBM Corp., Armonk, New York, USA) for analysis. Data from respondents meeting all inclusion criteria were analysed using descriptive statistics to provide frequencies of responses to each question. If there was a discrepancy between the total number of people reporting a source of dietary advice and the total number of people reporting details associated with advice from that source in a related sub-question, the highest total number of responses was used as the overall frequency for that source. For example, where 150 people selected that they received advice from a stoma nurse but 159 responded to a sub-question about the format of dietary advice received from a stoma nurse, then the total number of people receiving advice from a stoma nurse was assumed to be 159.
A comparison is presented between how dietary advice was received and how respondents would have preferred to receive advice. Responses may differ according to the length of time since having a stoma placed. Therefore, we conducted a post hoc comparison between those who had been living with an ileostomy for < 6 months vs > 10 years.
Ethical approval was obtained from the Faculty of Health Sciences Research Ethics Committee at the University of Bristol (reference number 73467). The survey has been reported in accordance with the Checklist for Reporting Results of Internet E-Surveys (CHERRIES; Appendix S1) [15].

Results
The survey was completed by 329 respondents. Thirtyeight did not meet inclusion criteria (30 outside the UK and Ireland; eight without current ileostomy) leaving a final sample of 291. Demographics and clinical characteristics of included respondents are shown in Table 1. Most were women (72.5%), age 45-74 years (64.9%), had an ileostomy due to ulcerative colitis (37.8%) and had an ileostomy for > 10 years (23.7%) or < 6 months (21.3%). Ileostomy-related problems Table 2 shows the prevalence of ileostomy-related problems. The most common issue was very loose/watery output, followed by wind or gas, and high output. When asked whether they thought improved dietary advice could have prevented any of these issues, 66 (22.7%) answered that it 'definitely' could have and 136 (46.7%) thought it 'possibly' could.

Provision of dietary advice
Two hundred and one of the 291 respondents (69.1%) received dietary advice for their ileostomy either from an HCP or the internet. Of the 90 who did not receive dietary advice, 82 (91.1%) would have liked to. Figure 1 shows the number of respondents who received dietary advice, from a range of sources, compared to preferred sources for dietary advice. The most common source was the stoma nurse (54.6% of all respondents), and this was also the most preferred source (69.8%). However, 59.5% of respondents wanted dietary advice from a dietitian while only 28.9% received this. Table 3 shows how respondents received and would have preferred to receive dietary advice. When advice was received from HCPs, it was most commonly verbal (median 86%, range 79%-100%), while printed information from HCPs was less common (median 29%, range 0%-69%). Preferences showed that more respondents would like to receive dietary advice from HCPs in printed format (median 63%, range 41%-86%). Few wanted advice from HCPs to be online (≤ 24%). Conversely, when advice was received from a registered support association or stoma product supplier it was usually printed material (64.3% or 67.7%) or online (66.7% or 48.4%). There were slight preferences for information to be provided as printed material (59.7% and 65.1%), but online was also popular ( 58%).   Table 4 shows responses regarding actual timing of dietary advice and preferred timing. When dietary advice was received from HCPs, it was mostly provided during hospital admission (e.g. of those who received advice from the stoma nurse, dietitian or surgeon, 79.0%, 63.0% and 72.7% respectively received advice at this time). Some received advice from the stoma nurse or dietitian after discharge (36.2% and 49.3%) and some before surgery (29.7% and 11.0%). Respondents indicated that more would have liked to receive dietary advice from HCPs before surgery and after discharge. Although the greatest preference was to receive dietary advice from the stoma nurse or dietitian while in hospital (72.3% and 74.2%), approximately half would have liked dietary advice from the stoma nurse or dietitian before surgery and after discharge (range 45%-58%). Most dietary advice from support associations and stoma product suppliers was received after discharge (89.2% and 82.8%), in line with respondent preference (83.3% and 90.0%).
Of the 201 respondents who received dietary advice, 124 (61.7%) felt that some or all of this advice was conflicting. Ninety-three (75.0%) of these reported they received advice from more than one source. When asked about the type of dietary advice received, 178 (88.6%) reported receiving advice to change the types of food they ate, i.e. adding/removing specific foods. One hundred and five (52.2%) were advised how to prepare certain foods, e.g. boil carrots instead of eating raw, and 155 (77.1%) were advised how to eat certain foods, e.g. chew well. Most did not receive advice on weight management (146 of 201, 72.6%). Of those who did receive advice about their weight, 36 (65.5%) were advised to gain weight vs six (10.9%) advised to lose weight. One hundred and seventy-nine of the 201 respondents (89.1%) who received dietary advice made changes based on this advice. Of these, 108 (60.3%) believed this helped manage their ileostomy.
Respondents were asked to select up to three feelings, from a list provided, that best described their experience of managing diet with a new ileostomy (Fig. 2). Over half felt anxious (55.0%), and around a third felt confused or frustrated (39.2% and 31.3%). In contrast, < 20% felt confident or well supported (18.9% and 13.4%).
Around three-quarters of participants responded 'fairly' or 'slightly' when asked about their confidence in/usefulness of/satisfaction with dietary advice

Subgroup analysis
Sixty-two respondents (21.3%) had been living with an ileostomy for < 6 months (group 1) and 69 (23.7%) for > 10 years (group 2). More people in group 1 than group 2 reported receiving any dietary advice (79.0% vs 52.2%), and they were more likely to report receiving dietary advice from a stoma nurse (71.0% vs 31.9%) and via social media (21.0% vs 8.7%). Over half in both groups who received dietary advice reported some of it to be conflicting (group 1, 65.3%; group 2, 55.6%). More people in group 1 than group 2 reported they

Discussion
Our survey identifies a need for improved provision of dietary advice for people with an ileostomy. Almost one-third of respondents had never received dietary advice for their ileostomy, but most would have liked it. A recent UK-based study of people with an output stoma of any type reported similar findings [13], suggesting that provision of dietary advice is not universal.
Feelings of anxiety, and to a lesser extent confusion and frustration, regarding diet among people with a new ileostomy were common and very few felt confident or well supported. Thus, there is an unmet need for highquality dietary advice for people with ileostomies. HCPs working with people with an ileostomy should work to ensure that dietary advice is fully embedded within care pathways and that the advice and support is clear, relevant and consistent.
We found a widespread problem with conflicting advice, which is similar to reports from qualitative studies of conflicting or confusing dietary advice among people with Crohn's disease and an ileostomy [10], and dissatisfaction with preoperative advice regarding appropriate dietary choices for people with a stoma [16]. It is  perhaps unsurprising that people with an ileostomy often experience conflicting advice since evidence to inform practice is limited and advice is primarily informed by experience and expert opinion [12,17]. Provision of appropriate advice is complicated by individual variation due to differences in length and health of functioning intestine, sometimes in addition to independent comorbidities such as diabetes [18,19]. Highquality research evaluating dietary interventions for people with an ileostomy is a priority to establish evidence to inform best practice for dietary management and provision of dietary advice. Quality, and appropriate personalization, of dietary advice could be further improved if all HCPs who support people with an ileostomy were to undertake appropriate training, assessment and continuing professional development.
This would ensure a comprehensive understanding of the anatomical and physiological impact of ileostomy surgery for different conditions, and awareness of the evidence-base to underpin the dietary advice they provide. Common problems experienced by respondents included loose output, gas and high output, and dietary changes were reported as beneficial to ileostomy management by around half of respondents who received advice. Others may have felt their issues were not related to diet or that the dietary advice they received was not helpful. Previous studies investigating whether having an ileostomy affects dietary choices have shown that the extent and type of dietary modification is variable. Furthermore, many people with an ileostomy continue a normal diet without apparent adverse  consequence [2,[20][21][22]. Appropriate dietary advice is particularly important for people with an ileostomy due to the nutritional risks associated with the loss of colon and changes in small intestine length and/or physiology, in conjunction with potential nutritional risks of dietary restriction for the purpose of managing consequences of their intestinal surgery [23,24]. In the weeks following ileostomy surgery, the remaining small intestine heals and adapts to the loss of the colon by increasing absorption of water and electrolytes [25]. Appropriate patient follow-up and support is needed, and dietary advice should be reviewed and adapted over time.
Stoma nurses were the main source of dietary advice, and the most preferred source of advice. However, many respondents wanted dietary advice from a dietitian while relatively few received this. In practice, all individuals having ileostomy surgery will see a surgeon and usually a stoma nurse, while only some will be referred to a dietitian [26], e.g. if there is a specific problem such as high output [27]. This is unlikely to change dramatically, at least in the near future, as National Health Service (NHS) dietetics services do not have sufficient resources to provide advice to all people with an ileostomy. Multidisciplinary working is essential to establish local consensus on what and how dietary advice should be provided to people with an ileostomy, to improve clarity and confidence in dietary management. One solution might be for stoma nurses and dietitians to collaboratively produce printed dietary advice for people with an ileostomy, ideally also in liaison with colorectal surgeons. This would improve consistency in dietary advice and give people with an ileostomy confidence that dietitians have been involved in developing this advice. Alternatively, this could be achieved on a national level if professional (e.g. Association of Coloproctology of Great Britain and Ireland) and patient organizations (e.g. the Ileostomy and Internal Pouch Association) work together with the British Dietetic Association to develop such guidance. It could then be made accessible not only to stoma nurses, surgeons and people with an ileostomy, but also to general practitioners and other HCPs involved in supporting people with an ileostomy. The provision of high-quality, and ideally evidence-based, dietary advice may ultimately improve levels of satisfaction with advice. Almost two-thirds of the respondents who received dietary advice were at least fairly satisfied with the advice, but there is still much room for improvement.
Comparison of responses from people living with an ileostomy for < 6 months vs > 10 years suggested that provision of dietary advice may be more common now than in the past. It is possible that some of the differences seen are due to difficulty recalling experiences from > 10 years ago compared to the last 6 months. However, an increase was seen in the proportion of people receiving dietary advice from a stoma nurse which may be due to improved access to stoma nurses in the NHS over recent decades [28]. As expected, social media were a more common source of dietary advice for those with recent ileostomy formation.
Respondents expressed a desire for dietary advice to be more frequently provided prior to surgery. However, it was previously suggested that patients feel overwhelmed with the amount of information received prior to colorectal surgery [16], and taking in additional information at this stressful time may be difficult. Special menus and verbal advice on making meal choices in hospital after ileostomy surgery were areas where patient needs were not met, and very few felt they received sufficient support in making meal choices. This may be due to organizational factors such as lack of training and time for ward staff. Staff training and development of ward protocols, including communication on individual patient dietary requirements and provision of special menus, by stoma nurses and dietitians for, and in collaboration with, surgical ward staff are probably key to improving support with meal choices in hospital following ileostomy surgery.
This survey has several strengths. To our knowledge, it is the first to investigate sources and format of dietary advice for people with an ileostomy. It also shows preferences regarding where and how they would like to receive dietary advice. A major strength was the use of cognitive interviews and collaboration with a wide range of stakeholders when designing the questionnaire [14]. This increased face validity, reducing the risk of respondents misinterpreting questions and responses, and ensured questions were relevant and comprehensive.
This study also has some limitations. Although we engaged with a wide range of stakeholders in the development of the questionnaire, it is possible that some relevant questions were not asked, that some response options were not broad enough, or some terms may not have been interpreted the same way by all respondents. Most respondents (72.5%) were women, whereas Hospital Episodes Statistics suggest that 47% of ileostomies are in women [29]. Over-representation of women is common in studies where surveys are the primary data collection method [30]. In addition, it is possible that self-selection bias may have resulted in responders with more ileostomy-related problems than non-responders, and perhaps more interested in diet.
All regions of Great Britain were well represented; however, small numbers of respondents from Northern Ireland and the Republic of Ireland may limit generalizability to these countries. A wide range of ages was represented, although there were fewer responses in the 16-24 year age group, reflecting the smaller proportion of ileostomy surgeries performed in this age range [29]. Older adults ≥ 75 years were under-represented, perhaps because social media were the primary mode of survey distribution [29].

Conclusions
Our findings suggest that there is an unmet need for high-quality dietary advice among people who undergo ileostomy surgery. Anxiety about managing diet with a new ileostomy is common. Stoma nurses are the main source of dietary advice, but it may be received from a wide range of sources and is often perceived as conflicting. Dietary advice and support need to be clear and consistent between HCPs to alleviate concerns. This could be achieved through collaboration between relevant professional and patient organizations to produce agreed guidelines for the dietary management and support of people with an ileostomy.