Volume 45 Number 4

Background

The World Council of Enterostomal Therapists^® (WCET^®)’s vision and goals are to support the care of individuals living with stomas, wounds or continence needs. To facilitate health professionals in delivering quality care to individuals living with, or preparing for a stoma, the WCET^® publishes the International Ostomy Guideline (IOG). The IOG presents a review of the best available evidence addressing specific clinical questions focused on understanding and supporting individuals with or preparing for a stoma. Based on the evidence, the IOG makes recommendations on assessment strategies, clinical interventions, and associated issues (such as health professional education) that best support delivery of quality stoma care around the world.

The WCET^® has commenced work on preparing a third edition of the IOG, which is being undertaken using a scientific approach, and the full guideline methodology has been previously published in a protocol.¹ The guideline update is based on recognised guideline development processes, particularly those presented by the Joanna Briggs Institute (JBI).^2-4 In brief, the guideline development methods for the IOG include :

• identification of a-priori clinical questions
• systematic literature searches
• critical evaluation of the evidence addressing the clinical questions, using recognised risk-of-bias appraisal tools^5-12
• summarisation of the available evidence in an evidence to decision framework^13,14
• consideration of benefits, risks, resources, feasibility and acceptability of interventions^13-15
• development of recommendations and best practice statements that balance the above considerations

Thus, the content of the guideline is focused on a-priori clinical questions (see Table 1) around which clinical recommendations will be made based on a wide range of evidence.

Table 1. Proposed clinical questions

The core values of the WCET^® are respect, integrity, communication, holistic care and a scientfic approach in advancing ostomy care.¹⁶ While these core values refer to the care of individuals living with or preparing for a stoma, these principles are relevant to, and also underpin the development of the third edition of the IOG. Holism and co-participatory care are essential guiding principles underpinning the care of individuals with a stoma, and form the foundation for high quality assessment, care planning and care delivery. Similarly, the concept of co-participation is particularly important to development of a guideline for ostomy care to ensure that resulting clinical guidance is relevant, feasible, acceptable and appropriate to the intended stakeholders, including individuals living with or preparing for a stoma. The IOG Guideline Development Panel includes interdisciplinary participation of ET/stoma/ostomy nurses and colorectal surgeons, as well as patient representatives who provide deep and meaningful input from individuals with stomas.  In addition, input from a wider audience of stomal therapy experts, colorectal surgeons and patient consumers is important to producing an IOG that represents not only the scientific evidence, but the needs and preferences of health professionals and individuals living with a stoma in different clinical and geographic settings. To this end, the IOG Guideline Development Panel sought formal input from stakeholders from over 60 countries on the content for the upcoming IOG (third edition) through a formal stakeholder survey.

Aim

The aim of this project was to identify the perceptions of stomal therapy experts, colorectal surgeons and patients living with an ostomy regarding the content of the third edition of the IOG, to ensure the guideline content addresses the needs and priorities of its target audience. Objectives were to determine level of interest in specific clinical topics, identify any significant gaps in the proposed guideline focus and to explore stakeholder preferences for resources to accompany the guideline.

Methods

In the first step, clinical questions were developed by the WCET^® IOG Development Panel based on:

• the expert clinical knowledge of the Panel
• the lived experience of individuals with a stoma
• topics identified through an audit of the previous edition of the IOG¹⁶
• peer reviewer feedback on the second edition of the IOG.

These clinical questions were published in the guideline development protocol¹ as a draft list of clinical questions.

Next, a survey was undertaken to collect the perceptions of IOG stakeholders on the proposed guideline content. Ethics approval was not required because this survey was a component of stakeholder input to the clinical guideline and the quality assurance process.

The stakeholder survey commenced with collection of demographic information about the stakeholder organisation and alignments with which the respondent identified. Next, a selection of 31 proposed clinical questions were presented each with a 5-point Likert scale to measure the respondents’ levels of interest/priority ascribed to each of the clinical questions. The Likert response prompts included: strong interest in this topic; somewhat interested in this topic; my opinion is neutral; not interested in this clinical question because it is not relevant to my practice; and not interested in this clinical question for another reason. Additional open-ended questions prompted respondents to nominate additional clinical questions for consideration by the IOG Guideline Development Panel, and resources that might accompany the IOG (third edition).

The stakeholder survey was presented on an online platform that was accessible to anyone with the survey link. The survey invitation and one reminder were distributed via email to the following stakeholders:

• WCET^® Executive Board
• WCET^® Education Committee
• Norma N Gill Foundation^®
• WCET^® International Delegates
• International Society of University Colon and Rectal Surgeons (ISUCRS) Education Committee
• International Ostomy Association (IOA)

The survey was available to complete for four weeks in June–July 2025. Completion of the survey was anonymous, and the questions were all optional to complete.

Descriptive statistics were used to analyse the Likert-style questions, and the open-response questions were analysed by grouping responses to the two open-ended questions on topics and resources together, according to their general theme.

Results

A total of 103 individuals responded to at least one question on the survey. The response rate cannot be calculated because the survey was available to anyone with a link (meaning the number of potential participants was not known). Of the 103 respondents, 37 indicated that they were members of/ primarily aligned with ISUCRS, 29 identified as committee members/primarily aligned with the WCET^®, 10 identified as consumers (person living with a stoma and/or an informal caregiver) and 27 respondents did not indicate their affiliation/identification.

There was a high level of interest in all the proposed clinical questions. Seven clinical questions addressing quality of life (QOL) topics were presented. Table 2 presents the responses by clinical question for all the different stakeholder categories. Across all stakeholders, overall positive level of interest (strong interest and somewhat interested) ranged from 87.38% to 97.96% for the seven QOL-related questions. The highest level of interest (97.96% across all stakeholders) was for the impact on QOL of having an ostomy (CQ1). This question had unanimous agreement across WCET^® members (100%), ISUCRS member (97.3%) and patient consumers/representatives (90%). The lowest level of interest (87.38% across all stakeholders) was for the impact of an ostomy on the individual’s sexuality (CQ2). This question (CQ2) had agreement across WCET^® members (96.55%), ISUCRS member (86.49%) and patient consumers/representatives (60%), but also received the highest levels of disinterest from the patient consumer/representative cohort, with 30% of respondents being neutral and 10% indicating the topic was not relevant to their situation.

Table 2. Level of interest (%) in QoL-related clinical questions by stakeholder groups

Four clinical questions addressing the broad clinical area of the individual’s knowledge, skills and self-care were presented. Table 3 presents the responses by different stakeholder categories. Across all stakeholders, there was a consistent, overall positive level of interest in the four questions ranging from 88.35% to 93.20%. Analysis by stakeholder group also showed very high levels of interest in aspects related to the individual’s knowledge, skills and self-care (see Table 3). For analysis of the cohort of all respondents, the neutral response for the four questions ranged from 4.85% (CQ8 and CQ10) to 5.83% (CQ9 and CQ11). Only a small amount of disinterest in this broad topic was evident, with 2.7% of surgeons rating factors that influence self-care ability (CQ9) as not being relevant to their practice and 1.03% of all stakeholders indicating that self-care assessment tools (CQ10) were not relevant to their context.

Table 3. Level of interest (%) in questions related to knowledge, skills and self care by stakeholder groups

Three clinical questions addressing the broad category of health professionals were presented. Table 4 presents the responses for all the different stakeholder categories. Across all stakeholders, there was overall positive level of interest for all three questions. 86.41% of respondents had positive interest in the attitudes and beliefs of health professionals regarding care of individuals with an abdominal ostomy (CQ12), 87.35% had positive interest in interventions for improving health professionals’ attitudes and beliefs (CQ13), and 97.73% had positive interest in the effectiveness of interprofessional practice models (CQ14). The questions about health professionals (CQ12–14) had neutral responses ranging from 2.7% to 13.51% (in the cohort of all respondents), and the highest negative response was the rating by surgeons of interventions for improving attitudes/beliefs (CQ13) at 5.41% having a no interest due to lack of relevance to their practice.

Table 4. Level of interest (%) in questions related to health professionals by stakeholder groups

Four clinical questions addressing preoperative care were presented. Table 5 presents the responses for all the different stakeholder categories. Analysis of all responses showed overall positive interest in all four questions, ranging from 88.35% (CQ18) to 94.18 % (CQ20). Neutral responses for the questions on preoperative care (CQ17–20) ranged from 0% to 10% across the different stakeholder groups, with the highest neutral responses observed for patient consumers/representatives (10% neutral for CQ17 and CQ18). No question received a higher than 3.45% for any cohort (WCET^® members for all questions on postoperative care) expressing no interest in the topic.

Table 5. Level of interest (%) in questions related to preoperative care by stakeholder groups

Six clinical questions addressing postoperative care were presented. Table 6 presents the responses by stakeholder categories. The analysis of all respondents showed an overall positive level of interest in all six questions on postoperative care, ranging from 88.35% (CQ26) to 94.99% (CQ21). In the analysis of all responses, none of the questions received a neutral response higher than 4.85% (CQ22) and no question received a response higher than 1.94% (CQ26) for ‘no interest in the topic’.

Table 6. Level of interest (%) in questions related to postoperative care by stakeholder groups

Three clinical questions addressing stomal products were presented. Table 7 presents the responses by stakeholder categories. The analysis of all responses showed overall positive interest in all of the questions on stomal products. Overall, 93.2% showed positive interest in guidance on tools available to assist in fitting ostomy barriers and abdominal containment devices (CQ27), 90.29% showed positive interest in guidance on factors to consider when fitting ostomy barriers and abdominal containment devices (CQ28) and 90.29% showed positive interest in guidance on devices/products to manage a retracted stoma (CQ29). Low percentages of respondents selected neutral responses regarding stomal products, and less than 1% of respondents (all from the cohort of participants aligned with ISUCRS) expressed a disinterest in these three questions.

Table 7. Level of interest (%) in questions related to stomal products by stakeholder groups

Four clinical questions addressing ongoing, long-term care were presented. Table 8 presents the responses by stakeholder categories. The analysis of all responses showed overall positive interest in all of the questions on ongoing care, ranging from 85.44% (CQ30) to 93.2% (CQ31) of respondents. The clinical question on effective strategies for nutrition and hydration for an individual with an abdominal ostomy (CQ31) had no respondents expressing disinterest, and only a small number of neutral responses (3.88%). Excepting the clinical question on effective strategies for high output ileostomy (CQ32) that received some disinterest from consumers (10%), the questions were generally of high interest for all the stakeholder cohorts.

Table 8. Level of interest (%) in questions related to ongoing care by stakeholder groups

Finally, eight clinical questions addressing needs of specific populations were presented. Table 9 presents the responses by stakeholder categories. The level of postive interest in religious/cultural considerations for individuals with a stoma was 82.53% across all respondents, with the remainder of respondents primarily neutral  (11.65%). The analysis of all responses showed overall positive interest in all of the presented populations with specific needs, ranging from 76.7% for individuals at the end of life (CQ41g) to 91.26% for individuals who are overweight, underweight or with obesity (CQ41c). The highest level of disinterest was only 5.83% (individuals with spinal cord injury, CQ41d).

Table 9. Level of interest (%) in questions related to special population needs by stakeholder groups

Suggestions provided on additional clinical topics and resources of interest were grouped according to the broad topic area they related to (see Table 10). The 31 comments received were generally unique (only submitted by one respondent) excepting interest in child populations (n=3 comments) and telehealth education (n=2 comments).

Table 10. Additional topics and resources proposed for inclusion in the IOG (third edition)

Discussion

This survey reports the outcomes from a stakeholder consultation process that sought to identify the level of interest in different clinical topics identified as being signifianct to include in the IOG (third edition) guideline. By canvassing the opinion of international experts in ostomy care and stomal surgery, the Guideline Development Panel aimed to identify any gaps in the intended clinical guidance and to ensure that the needs of a diverse target audience would be met.

To be effective, clinical guidelines must meet the needs of their users. Substantial evidence suggests that implementation of guidelines is improved when the clincial guidance is applicable, communicable and addresses the values and needs of the target community and intended guideline users.^17,18 In developing the protocol for the IOG (third edition), the Guideline Development Panel placed a strong focus on the guiding principle of engagement with stakeholders. The guideline development methods embody principles of collaboration, participation, and consultation. The Guideline Development Panel includes international ET/stoma/ostomy nurses/clinicians and surgeons as well as individuals living with stoma at different stages in their journey. This collaboration ensures that representation of intended guideline users are actively participating in the oversight group, increasing the applicability and relevance of the guideline for stakeholders.^19,20

By undertaking early, targeted consultation with ET/stoma/ostomy nurses/clinicians and surgeons for whom the guideline is designed, a broader range of perspectives on the intended guideline content was canvassed and incorporated into the guideline development. Approximately 10% of responses to the stakeholder survey were received from members of a patient consumer organisation, increasing the input from individuals living with a stoma who are the end-users of the IOG. By consulting a wider body of patient consumers, the Guideline Development Panel can ensure that the resulting recommendations uphold and support their needs, for example by promoting collaboration, shared decision making, and strategies to promote self-care and emopowerment for individuals living with a stoma.²⁰ Additionally, the consultation undertaken through this stakeholder survey raises awareness of the guideline development project amongst WCET^® Board, WCET^® Education Committee, WCET^® International Delegates and ISUCRS members, many of whom are key opinion leaders, educators and champions whose engagement will facilitate uptake and implementation of the recommendations.²¹ The strong engagement, with over 100 respondents, is considered to have successfully gained diverse input and opinion to the IOG (third edition) and to promote the project to target users.

The results indicated there is strong agreement with the a-priori clinical questions identified in the guideline protocol.¹ Excepting one question, each of the 31 clinical questions presented to survey participants received a positive rating of (weak or strong) interest from over 85% of respondents. The questions with lowest positive interest level were targeted to a specific population groups (such as individuals at the end of life or with spinal cord injury) which the stakeholders may have less clinical exposure to, reducing the relevance of the topic to their specific practice or experience. However, these questions generated more neutral than negative responses. The proposed clinical questions were based on the opinions of experts in the field, as well as feedback received on the previous edition of the guideline. It appears this strategy has ensured a high level of relevance for the planned content.

Our survey results also showed a high agreement between different cohort of stakeholders (WCET^® members, ISUCRS members and patient consumers) in the interest level of the clinical questions. The high levels of agreement may reflect a general high level of collaboration between nurses, surgeons and individuals with a stoma, as well as the strong patient influence and leadership in the advancement of the field of enterostomal therapy.^22,23 This finding reinforces the literature highlighting the significance of collaborative care models and strategies to promote its implementation, and also reflects the core values and interests of WCET^® and its members regarding quality of life and ongoing, lifelong care of individuals living with a stoma.

The open-ended responses identified several themes for guideline content. The Guideline Development Panel considered these suggestions were extensions of the current proposed clinical questions, and provided guidance on important areas to include in implementation considerations. For example, the suggestions relating to preoperative care seek clarifications on how to deliver care (such as stomal siting, preoperative counselling) rather than posing new clinical questions. The suggestions will be used as a resource by the Guideline Development Panel when developing clinical guidance for the proposed clinical questions.

The survey has some limitations. It was distributed to members of key WCET^® committees and ISUCRS committees, which may have introduced sampling bias by limiting participant selection to clinical experts. The selection of experts to provide feedback on the relevance of the intended content to the needs of clinicians and patients working and living with stomas may not reflect the perceptions of novice health professionals. However, given the high agreement between expert stomal therapy clinicians and individuals living with a stoma, the Guideline Development Panel has confidence that the intended content will address appropriate clinical topics for providing comprehensive ostomy care. The anonymous nature of the survey means we are unable to identify whether the responses represent the global audience for the IOG (third edition). We invited the WCET^® International Delegates in order to receive international perspectives; however, it is a limitation that in order to preserve anonymity we did not record the geographic regions of survey respondents. Finally, the survey only included 75% of the proposed clinical questions. Those questions not included in the survey were topics identified as being universally important, specifically managing peristomal, parastomal and stomal complications.

Conclusion

Undertaking a survey of international ET/stoma/ostomy nurses/clinicians, surgeons and individuals living with stoma was considered an important step in the guideline development process for the IOG (third edition). By consulting with stakeholders, the Guideline Development Panel has identified that the proposed clinical questions are of interest to a high percent of the intended users for the guideline. Several suggestions for content were received from survey participants that will be addressed in implementation considerations describing how to implement the clinical recommendations in the guideline. This survey also confirmed that nurses, surgeons, and individuals living with a stoma have very similar expectations about guideline content and priorities in stomal care, which reinforces the principles of collaboration, participation and consultation that are embodied in the design of the guideline development project.

Conflict of interest

The authors declare no conflicts of interest.

Grant acknowledgement

The World Council of Enterostomal Therapists^® gratefully acknowledges the unrestricted educational grant from Hollister which will be used to support the development of the IOG 3rd Edition.

The IOG 3rd Edition is the sole independent work of the WCET^® and partner organisation IUSCRS and in no way will be influenced by the company who provided the unrestricted education grant.

Author(s)

Emily Haesler*
PhD P Grad Dip Adv Nurs (Gerontics) BN FWA
Adjunct Professor, Curtin University
Adjunct Associate Professor, Australian Centre for Evidence Based Aged Care, La Trobe University

Elizabeth A Ayello
PhD RN CWON ETN MAWPCA FAAN
WCET^® Immediate Past President

Laurent O Chabal
BSc (CBP) RN OncPall (Cert) Dip (WH) ET EAWT
WCET^® President 2022–2026

Denise Hibbert
MSc-WHTR RGN BSc DipHE ONC STN FSSCRS
WCET^® President-Elect 2022–2026

Jennifer L Prentice
PhD BN RN STN FAWMA
WCET^® Journal Editor

Joaquim Costa Pereira
MD PhD
Chair Education Committee ISUCRS

Joseph W Nunoo-Mensah
MBBS MB FRCS ChB LLM
Immediate Past President ISUCRS

Julie Atkinson
Patient Representative

Richard McNair
Chairman International Ostomy Association, Patient Representative

* Corresponding author

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