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Natalie Yu, Kyle Wu, Tamie Samyue, Stephanie Fry, Annalise Stanley, Alyson Ross, Ruth Malcolm, William Connell, Emily Wright, Nik S Ding, Ola Niewiadomski, Mark Lust, Julien Schulberg, Emma Flanagan, Michael A Kamm, Chamara Basnayake, Outcomes of a Comprehensive Specialist Inflammatory Bowel Disease Nursing Service, Inflammatory Bowel Diseases, Volume 30, Issue 6, June 2024, Pages 960–969, https://doi.org/10.1093/ibd/izad145
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Abstract
Inflammatory bowel disease (IBD) is best managed by a multidisciplinary team within a dedicated IBD service. IBD nurses play an important role within this team. We aimed to evaluate the contribution of our comprehensive outpatient IBD nursing service on patient outcomes, quality of care, and healthcare costs.
We performed a retrospective review of all IBD nurse encounters with patients over a 12-month period from October 2020 to September 2021 at a tertiary IBD referral center. Each nurse encounter was classified with respect to its clinical context, activities, and outcomes. Descriptive statistics were used to characterize these encounters and an economic analysis was performed to estimate the cost savings to the hospital.
A total of 2537 nurse encounters occurred with 682 patients; 41% of encounters were nurse-initiated contacts with patients and 34% were patient-initiated contacts with the nurse helpline (26% via email, 8% via telephone). Most encounters involved clinical assessments (66%), providing education, counseling or updates (47%), and reviewing investigation results (38%). A gastroenterologist was consulted for advice in 35% of contacts. An estimated 29 emergency department visits, 1925 outpatient clinic visits, and 137 general practitioner visits were avoided. After deducting costs incurred, a net estimated annual saving of up to AUD $570 838 was achieved. Nurses commonly facilitated faster access to investigations (29%), education provision (28%), delivery of biologic services (25%), and medication changes (19%).
A comprehensive IBD nursing service is associated with improved patient outcomes and quality of care, and reduced healthcare costs. This study supports the expanding role of IBD nurses in a modern multidisciplinary IBD service and the need for greater funding and integration of IBD nurses into IBD services.

Although specialist inflammatory bowel disease (IBD) nurses are valuable members of multidisciplinary IBD teams, there is limited evidence on outcomes of comprehensive IBD nursing models of care in the modern biologic era, and previous studies have focused on the economic benefits of nursing roles.
This study demonstrates a broader range of outcomes of our larger integrated IBD nursing service in facilitating timely access to high-quality care and reducing healthcare utilization and costs.
This study supports the expanding role of IBD nurses in modern outpatient IBD models of care and the need for greater funding and integration of IBD nurses into IBD services.
Introduction
Inflammatory bowel diseases (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), are complex chronic inflammatory disorders of the gastrointestinal tract that require long-term monitoring and treatment. IBD can be associated with significant morbidity and reduction in quality of life for patients. The economic burden on the healthcare system is considerable.
It is well-established that IBD patients are best managed by dedicated IBD services, supported by a multidisciplinary team including gastroenterologists, nurses, colorectal surgeons, dieticians, psychologists, pharmacists, radiologists, and pathologists.1,2 Hospitals with a formal IBD service, generally considered as having a multidisciplinary team, specialist nurses, a named clinical lead and advice line for patients,3-5 are associated with improved patient outcomes and quality of care, and decreased inpatient healthcare utilization and costs.6-8
Within the multidisciplinary IBD team, IBD nurses have an important role in supporting the delivery of high-quality patient care. They perform a wide range of tasks outlined in the European Crohn’s and Colitis nursing guidelines.9,10 The value of IBD nurses is accepted by gastroenterologists and patients, and access to IBD nurses is regarded as optimal standard of care for IBD patients.9,10 There are currently no published guidelines on the recommended number of IBD nurses required for a specific number of patients managed by an IBD service. However, the Crohn’s and Colitis Australian IBD Standards recommend a minimum of 1.5 full-time equivalent IBD nurses per defined population of 250 000.3
Despite the recognition that IBD nurses are key members of multidisciplinary IBD services, it remains a significant challenge for many IBD services to acquire sufficient funding to support IBD nursing roles.11 Evidence to support the benefits of IBD nurses is required to bolster the case for funding; however, there are limited data on the outcomes of comprehensive IBD nursing models of care in the modern biologic era. While previous studies12-14 have evaluated the effect of an IBD nurse role on patient care, they focused on the economic benefits of nurse interventions in reducing hospital admissions, emergency department (ED) visits, and outpatient clinic reviews. This study aimed to evaluate a broader range of benefits of our modern comprehensive IBD nursing service on patient outcomes, quality of care, and healthcare costs in the context of outpatient IBD care.
Methods
Setting
St Vincent’s Hospital Melbourne is a tertiary referral center in metropolitan Melbourne, Australia, which has a comprehensive specialist IBD clinical service that manages 1308 patients with IBD annually. The IBD service runs twice weekly IBD outpatient clinics, weekly IBD pregnancy clinics, multidisciplinary IBD meetings, and IBD therapeutic drug monitoring (TDM) meetings, along with an inpatient service. The IBD service is staffed by a multidisciplinary team that includes 11 IBD subspecialist gastroenterologists, 6 IBD nurses, 6 colorectal surgeons, a dietician, and a psychologist. In our outpatient model of care, gastroenterologists are employed on a sessional basis, providing weekly consultative clinic services (equal to 0.9 full-time equivalent [FTE] gastroenterologists), while nurses are employed full time to provide ongoing care during the working week.
The IBD nurse service was established in 2009 and currently employs 3.2 FTE specialist IBD nurses, equivalent to 1 full-time nurse for every 409 patients managed by the IBD service. The nursing team is staffed by 1 nurse practitioner (0.6 FTE) and 5 registered nurses who are appointed as clinical nurse consultants (2.6 FTE), reflecting their specialty experience and clinical competence. The nurses were educated primarily through on-the-job training in IBD with supervision and guidance from senior IBD nurses and gastroenterologists. In addition, they attend local and international educational meetings and formal IBD courses organized by the Gastroenterological Nurses College of Australia. The nurse practitioner also undertook a master’s degree in advanced nursing practice.
The nurses not only support patient care predominantly in the outpatient setting, but also provide inpatient consultations. Their key roles in the outpatient setting include managing a nurse-led telephone and email IBD helpline, a nurse-led biologics service, biologics and thiopurine TDM, and a nurse practitioner outpatient clinic. The patient helpline allows direct access to the IBD nurses for advice during office hours, as the first point of contact for queries from patients, their families, and healthcare providers. Nurses managed helpline issues autonomously and sought advice from the patient’s gastroenterologist if required. All interactions between the IBD nurses and patients are routinely documented by the nurses prospectively in the electronic medical records.
At our center, patients are reviewed in IBD clinic by a gastroenterologist on a regular schedule depending on their clinical state. These clinic visits involve a clinical assessment, review of investigations, and initiation of a management plan. Contacts between IBD nurses and patients generally occur as a supplement to these clinic reviews, with the exception of the IBD nurse practitioner clinic. This occurs as a substitute to clinic reviews with gastroenterologists, with the nurse practitioner generally independently reviewing stable patients in remission.
Study Design
We performed a retrospective review of the medical records for all IBD nurse encounters with patients that occurred over a 12-month period from October 1, 2020, to September 30, 2021. All patients with a confirmed diagnosis of IBD, who had an interaction with an IBD nurse during the study period, were included. If an interaction occurred as a direct continuation of a related recent encounter, the interactions were combined together into a single encounter. Research clinical trial encounters and inpatient encounters were excluded. Ethical approval was obtained from the St Vincent’s Hospital Melbourne Human Research and Ethics Committee (QA#21048).
Patient Characteristics
Characteristics recorded for each encounter included the patient’s age, sex, residential location (metropolitan or regional/rural), diagnosis (CD or UC), disease phenotype (according to the Montreal classification), disease duration, current medical therapy, and total number of IBD nurse contacts over the 12-month period.
Classification of IBD Nurse Encounters
Each IBD nurse encounter was classified in terms of (1) the context in which it occurred, (2) the activity that was performed, and (3) the outcome it led to. All encounters were assigned to only one context, but some encounters were assigned to multiple activities and outcomes. The avoidance of ED, outpatient clinic, or general practitioner (GP) visits were hypothetical outcomes, and where relevant, only one such outcome could be assigned to each encounter. Encounters were coded by N.Y. and K.W., with adjudication from C.B. for final interpretation of data when this was unclear.
Contexts
Contexts included
1. Patient-initiated contact with the IBD nurse via the email helpline
2. Patient-initiated contact with the IBD nurse via the telephone helpline
3. IBD nurse-initiated contact with the patient
4. Gastroenterologist or other doctor-initiated contact with the IBD nurse, who then initiated contact with the patient
5. TDM meeting (IBD nurse–initiated contact with the patient to follow up with a management plan after discussion of biologic drug levels or thiopurine metabolite levels at a multidisciplinary meeting with a gastroenterologist, IBD nurse, and pharmacist)
6. IBD nurse practitioner outpatient clinic.
Activities
Activities included
1. Education, counseling, answering patient questions, or providing patient updates (with regard to the patient’s disease, investigations, or therapy)
2. Assessment of clinical condition (new symptoms, follow-up on symptoms or side effects, or follow-up after medication changes)
3. Organizing investigations (pathology, imaging, or endoscopy)
4. Organizing medication prescriptions
5. Biologic drug-related activities (organizing biologic applications, prescriptions, dispensing schedules, or referrals for infusions and injection training)
6. Organizing clinic appointments
7. Organizing hospital admissions
8. Reviewing investigation results
9. Referral to other members of the multidisciplinary team (IBD dietician, psychologist, colorectal surgeon, or stoma nurse)
10. Psychosocial support
11. Preventive care assessment (preventive health questionnaire screening for flu vaccination, pneumococcal vaccination, osteoporosis screening, skin cancer screening, cervical cancer screening in female patients, smoking status, mental health, and nutrition)
12. Administrative support (writing letters, certificates, requesting correspondence, or updating records)
13. Consultation with a gastroenterologist for advice
Outcomes
Outcomes included
1. ED visit avoided (assessment and management of a patient with symptoms that require urgent attention and are severe enough to otherwise warrant presentation to ED)
2. ED visit advised (patient assessed as requiring urgent ED review, rather than requiring outpatient clinic or GP review)
3. Direct ward admission (patient assessed as requiring hospital admission, without prior ED review)
4. IBD outpatient clinic review avoided (intervention performed that is specific to IBD and would otherwise require gastroenterologist review in clinic, including education and counseling; following up on disease activity, investigation results, or therapy; organizing investigations; adjusting IBD medications; or providing prescriptions for new IBD medications)
5. IBD outpatient clinic review expedited (appointment booked within 1 week of contact for a patient assessed as requiring early gastroenterologist review)
6. GP review avoided (assessment and management of a medical issue not specific to IBD, that could otherwise be managed by a GP, without gastroenterologist review)
7. GP review advised (patient assessed as requiring GP review for an issue that is not specific to IBD and would not require initial gastroenterologist review)
8. Faster access to investigations
9. Flare or symptom management
10. Medication initiation or adjustment
11. Delivery of biologics services
12. Preventive care recommendation
13. Faster access to other members of the multidisciplinary team (IBD dietician, psychologist, colorectal surgeon, or stoma nurse)
14. Provision of education
15. No new outcome or change in care
For encounters in which preventive care assessments (activity 11) were performed, specific outcomes (either no intervention or preventive care recommendation given) were also recorded for each preventive health measure assessed. If data were unavailable for a particular preventive health measure, no outcome was recorded and the patient was omitted from the analysis for that specific preventive health measure.
Data Analysis
Descriptive statistics including counts, frequencies, medians, and interquartile ranges (IQRs) were used to characterize the study cohort and describe the contexts, activities, and outcomes of nurse encounters. Between-group comparisons for special patient groups, helpline users and high users, were performed using the Fisher’s exact test or chi-square test for categorical variables and the Mann-Whitney test for continuous variables. A P value of <.05 was significant. Statistical analyses were performed using Stata release 17 (StataCorp).
Economic Outcomes
An economic analysis was performed to compare the estimated total savings achieved through the avoidance of ED, clinic, and GP visits, with the estimated total cost of the nursing service. The estimated costs of ED visits and clinic appointments were obtained from the 2020 to 2021 national pricing reports from the Independent Hospital Pricing Authority in Australia, which provides cost information for Australian public hospital services. The estimated cost of GP visits was obtained from the current Medicare Benefits Schedule in Australia, which lists healthcare services subsidized by the Australian government. The estimated cost of IBD nursing salaries was obtained from the 2020 to 2024 Victorian Public Sector Nurses and Midwives Enterprise Agreement.
Subgroup Analyses
Subgroup analyses were performed to evaluate the utilization of the IBD nurse service among special patient groups, defined as elderly patients (>60 years of age), pediatric-to-adult transition patients (<20 years of age), and newly diagnosed patients (disease duration of <1 year). Demographic and clinical characteristics of helpline users and high users of the IBD nurse service were also examined. A post hoc analysis was performed to determine the prevalence of psychological comorbidity in high-user patients, as documented in the medical records.
Results
Patient Characteristics
During the study period, there were 2537 different IBD nurse encounters with 682 different patients (Table 1). Of the 2537 encounters, 53% (n = 1347 of 2537) occurred with female patients. The median age was 37.7 (IQR, 30.1-49.2) years. A total of 62% (n = 1561 of 2537) of contacts were with patients living in metropolitan regions, as opposed to regional or rural areas. A total of 70% of contacts (n = 1766 of 2537) occurred with CD patients, while 30% (n = 753 of 2537) occurred with UC patients. Median disease duration was 11.2 (IQR, 5.2-18.9) years and 3% (n = 86 of 2537) of encounters were with patients with recently diagnosed IBD (<1 year).
Baseline characteristics of patients who had inflammatory bowel disease nurse encounters—by encounter and by patient.
Characteristic . | Total encounters (n = 2537) . | Total patients (n = 682) . |
---|---|---|
Age, y | 37.7 (30.1-49.2) | 38.0 (30.3-50.1) |
Sex | ||
Female | 1347 (53.1) | 354 (51.9) |
Male | 1190 (46.9) | 328 (48.1) |
Location | ||
Metropolitan | 1561 (61.5) | 437 (64.1) |
Regional/rural | 976 (38.5) | 245 (35.9) |
Disease duration, y | 11.2 (5.2-18.9) | 11.2 (5.2-18.9) |
Diagnosis | ||
Crohn’s disease | 1766 (69.6) | 461 (67.6) |
Ulcerative colitis | 753 (29.7) | 214 (31.4) |
Indeterminate colitis | 18 (0.7) | 7 (1.0) |
Crohn’s disease phenotypea | ||
Ileal | 411 (23.3) | 121 (26.2) |
Colonic | 558 (31.6) | 141 (30.6) |
Ileocolonic | 792 (44.8) | 196 (42.5) |
Upper gastrointestinal | 99 (5.6) | 26 (5.6) |
Nonstricturing, nonpenetrating | 871 (49.3) | 235 (51.0) |
Stricturing | 579 (32.8) | 147 (31.9) |
Penetrating | 315 (17.8) | 78 (16.9) |
Perianal disease | 716 (40.5) | 165 (35.8) |
Ulcerative colitis phenotypeb | ||
Proctitis | 67 (8.9) | 19 (8.9) |
Distal colitis | 360 (47.8) | 96 (44.9) |
Pancolitis | 325 (43.2) | 98 (45.8) |
Medical therapy | ||
Nil | 113 (4.5) | 48 (7.0) |
5-aminosalicylates | 641 (25.3) | 185 (27.1) |
Thiopurines | 1351 (53.3) | 323 (47.4) |
Methotrexate | 103 (4.1) | 30 (4.4) |
Tacrolimus | 12 (0.5) | 3 (0.4) |
Corticosteroids | 176 (6.9) | 37 (5.4) |
Infliximab | 838 (33.0) | 198 (29.0) |
Adalimumab | 703 (27.7) | 173 (25.4) |
Vedolizumab | 155 (6.1) | 43 (6.3) |
Ustekinumab | 197 (7.8) | 42 (6.2) |
Golimumab | 1 (0.0) | 1 (0.2) |
Tofacitinib | 52 (2.1) | 10 (1.5) |
Number of encounters | — | 3 (1-5) |
Characteristic . | Total encounters (n = 2537) . | Total patients (n = 682) . |
---|---|---|
Age, y | 37.7 (30.1-49.2) | 38.0 (30.3-50.1) |
Sex | ||
Female | 1347 (53.1) | 354 (51.9) |
Male | 1190 (46.9) | 328 (48.1) |
Location | ||
Metropolitan | 1561 (61.5) | 437 (64.1) |
Regional/rural | 976 (38.5) | 245 (35.9) |
Disease duration, y | 11.2 (5.2-18.9) | 11.2 (5.2-18.9) |
Diagnosis | ||
Crohn’s disease | 1766 (69.6) | 461 (67.6) |
Ulcerative colitis | 753 (29.7) | 214 (31.4) |
Indeterminate colitis | 18 (0.7) | 7 (1.0) |
Crohn’s disease phenotypea | ||
Ileal | 411 (23.3) | 121 (26.2) |
Colonic | 558 (31.6) | 141 (30.6) |
Ileocolonic | 792 (44.8) | 196 (42.5) |
Upper gastrointestinal | 99 (5.6) | 26 (5.6) |
Nonstricturing, nonpenetrating | 871 (49.3) | 235 (51.0) |
Stricturing | 579 (32.8) | 147 (31.9) |
Penetrating | 315 (17.8) | 78 (16.9) |
Perianal disease | 716 (40.5) | 165 (35.8) |
Ulcerative colitis phenotypeb | ||
Proctitis | 67 (8.9) | 19 (8.9) |
Distal colitis | 360 (47.8) | 96 (44.9) |
Pancolitis | 325 (43.2) | 98 (45.8) |
Medical therapy | ||
Nil | 113 (4.5) | 48 (7.0) |
5-aminosalicylates | 641 (25.3) | 185 (27.1) |
Thiopurines | 1351 (53.3) | 323 (47.4) |
Methotrexate | 103 (4.1) | 30 (4.4) |
Tacrolimus | 12 (0.5) | 3 (0.4) |
Corticosteroids | 176 (6.9) | 37 (5.4) |
Infliximab | 838 (33.0) | 198 (29.0) |
Adalimumab | 703 (27.7) | 173 (25.4) |
Vedolizumab | 155 (6.1) | 43 (6.3) |
Ustekinumab | 197 (7.8) | 42 (6.2) |
Golimumab | 1 (0.0) | 1 (0.2) |
Tofacitinib | 52 (2.1) | 10 (1.5) |
Number of encounters | — | 3 (1-5) |
Values are median (interquartile range) or n (%).
aPercentage of patients with Crohn’s disease.
bPercentage of patients with ulcerative colitis.
Baseline characteristics of patients who had inflammatory bowel disease nurse encounters—by encounter and by patient.
Characteristic . | Total encounters (n = 2537) . | Total patients (n = 682) . |
---|---|---|
Age, y | 37.7 (30.1-49.2) | 38.0 (30.3-50.1) |
Sex | ||
Female | 1347 (53.1) | 354 (51.9) |
Male | 1190 (46.9) | 328 (48.1) |
Location | ||
Metropolitan | 1561 (61.5) | 437 (64.1) |
Regional/rural | 976 (38.5) | 245 (35.9) |
Disease duration, y | 11.2 (5.2-18.9) | 11.2 (5.2-18.9) |
Diagnosis | ||
Crohn’s disease | 1766 (69.6) | 461 (67.6) |
Ulcerative colitis | 753 (29.7) | 214 (31.4) |
Indeterminate colitis | 18 (0.7) | 7 (1.0) |
Crohn’s disease phenotypea | ||
Ileal | 411 (23.3) | 121 (26.2) |
Colonic | 558 (31.6) | 141 (30.6) |
Ileocolonic | 792 (44.8) | 196 (42.5) |
Upper gastrointestinal | 99 (5.6) | 26 (5.6) |
Nonstricturing, nonpenetrating | 871 (49.3) | 235 (51.0) |
Stricturing | 579 (32.8) | 147 (31.9) |
Penetrating | 315 (17.8) | 78 (16.9) |
Perianal disease | 716 (40.5) | 165 (35.8) |
Ulcerative colitis phenotypeb | ||
Proctitis | 67 (8.9) | 19 (8.9) |
Distal colitis | 360 (47.8) | 96 (44.9) |
Pancolitis | 325 (43.2) | 98 (45.8) |
Medical therapy | ||
Nil | 113 (4.5) | 48 (7.0) |
5-aminosalicylates | 641 (25.3) | 185 (27.1) |
Thiopurines | 1351 (53.3) | 323 (47.4) |
Methotrexate | 103 (4.1) | 30 (4.4) |
Tacrolimus | 12 (0.5) | 3 (0.4) |
Corticosteroids | 176 (6.9) | 37 (5.4) |
Infliximab | 838 (33.0) | 198 (29.0) |
Adalimumab | 703 (27.7) | 173 (25.4) |
Vedolizumab | 155 (6.1) | 43 (6.3) |
Ustekinumab | 197 (7.8) | 42 (6.2) |
Golimumab | 1 (0.0) | 1 (0.2) |
Tofacitinib | 52 (2.1) | 10 (1.5) |
Number of encounters | — | 3 (1-5) |
Characteristic . | Total encounters (n = 2537) . | Total patients (n = 682) . |
---|---|---|
Age, y | 37.7 (30.1-49.2) | 38.0 (30.3-50.1) |
Sex | ||
Female | 1347 (53.1) | 354 (51.9) |
Male | 1190 (46.9) | 328 (48.1) |
Location | ||
Metropolitan | 1561 (61.5) | 437 (64.1) |
Regional/rural | 976 (38.5) | 245 (35.9) |
Disease duration, y | 11.2 (5.2-18.9) | 11.2 (5.2-18.9) |
Diagnosis | ||
Crohn’s disease | 1766 (69.6) | 461 (67.6) |
Ulcerative colitis | 753 (29.7) | 214 (31.4) |
Indeterminate colitis | 18 (0.7) | 7 (1.0) |
Crohn’s disease phenotypea | ||
Ileal | 411 (23.3) | 121 (26.2) |
Colonic | 558 (31.6) | 141 (30.6) |
Ileocolonic | 792 (44.8) | 196 (42.5) |
Upper gastrointestinal | 99 (5.6) | 26 (5.6) |
Nonstricturing, nonpenetrating | 871 (49.3) | 235 (51.0) |
Stricturing | 579 (32.8) | 147 (31.9) |
Penetrating | 315 (17.8) | 78 (16.9) |
Perianal disease | 716 (40.5) | 165 (35.8) |
Ulcerative colitis phenotypeb | ||
Proctitis | 67 (8.9) | 19 (8.9) |
Distal colitis | 360 (47.8) | 96 (44.9) |
Pancolitis | 325 (43.2) | 98 (45.8) |
Medical therapy | ||
Nil | 113 (4.5) | 48 (7.0) |
5-aminosalicylates | 641 (25.3) | 185 (27.1) |
Thiopurines | 1351 (53.3) | 323 (47.4) |
Methotrexate | 103 (4.1) | 30 (4.4) |
Tacrolimus | 12 (0.5) | 3 (0.4) |
Corticosteroids | 176 (6.9) | 37 (5.4) |
Infliximab | 838 (33.0) | 198 (29.0) |
Adalimumab | 703 (27.7) | 173 (25.4) |
Vedolizumab | 155 (6.1) | 43 (6.3) |
Ustekinumab | 197 (7.8) | 42 (6.2) |
Golimumab | 1 (0.0) | 1 (0.2) |
Tofacitinib | 52 (2.1) | 10 (1.5) |
Number of encounters | — | 3 (1-5) |
Values are median (interquartile range) or n (%).
aPercentage of patients with Crohn’s disease.
bPercentage of patients with ulcerative colitis.
A total of 52% (n = 353 of 682) of patients were on thiopurines or methotrexate, accounting for 57% (n = 1454 of 2537) of contacts. A total of 68% (n = 467 of 682) of patients were on biologic therapy, accounting for 77% (n = 1941 of 2537) of contacts.
Among the 682 patients, the median number of encounters with IBD nurses was 3 (IQR, 1-5) over the study period (Table 1). A total of 73% (n = 499 of 682) of patients had more than 1 encounter, and 22% (n = 149 of 682) of patients had more than 5 encounters. High users of the IBD nurse service were defined as patients who had 9 or more encounters (top fifth percentile). There were 47 high-user patients, who accounted for 21% (n = 523 of 2537) of the total number of nurse encounters.
Contexts
Figure 1 shows the contexts in which IBD nurses interacted with patients. Most encounters (41% [n = 1047 of 2537]) were IBD nurse–initiated contacts with patients. A total of 35% (n = 878 of 2537) of encounters were patient-initiated contacts with the IBD nurse helpline, with 3 times as many helpline contacts occurring via email (26% [n = 670 of 2537]) than via telephone (8% [n = 208 of 2537]). The remaining encounters occurred in the context of TDM meeting follow-up with patients, gastroenterologist or other doctor-initiated contacts with IBD nurses and IBD nurse practitioner clinics.

Distribution of contexts in which inflammatory bowel disease (IBD) nurses had contact with patients. Each encounter could be assigned to only 1 context.
Activities
Activities performed during the IBD nurse encounters are shown in Figure 2. Most encounters were to perform a clinical assessment (66% [n = 1671 of 2537]) or provide education, counseling or updates about the patient’s disease, investigations, or treatment (47% [n = 1192 of 2537]). Many encounters involved reviewing investigation results (38%), organizing investigations (30%), biologic drug–related activities (30%), and preventive care assessments (20%). Fewer encounters involved organizing medication prescriptions, administrative support, organizing clinic appointments, referrals to allied clinicians, psychosocial support, and organizing hospital admissions. IBD nurses consulted a gastroenterologist for advice in 35% of encounters.

Distribution of activities performed by inflammatory bowel disease (IBD) nurses. Each encounter could be assigned to 1 or more activities.
Outcomes
Figure 3 shows outcomes of the IBD nurse encounters. We estimated that IBD nurse interventions likely led to the avoidance of 29 (1%) ED visits, 1925 (76%) outpatient clinic reviews, and 137 (5%) GP reviews. Four (0.2%) direct ward admissions were organized, 30 (1%) ED visits were advised, 86 (3%) outpatient clinic reviews were expedited, and 374 (15%) GP visits were advised. IBD nurses most commonly facilitated faster access to investigations (29%), provision of education (28%), delivery of biologics services (25%), and medication changes (19%). They also frequently provided preventive care recommendations, flare or symptom management, and faster access to allied clinicians. A total of 8% of encounters did not lead to a new outcome or change in care.

Distribution of outcomes of inflammatory bowel disease (IBD) nurse encounters. Each encounter could be assigned to 1 or more outcomes. ED, emergency department; GP, general practitioner.
A total of 500 preventive care assessments were performed in 318 patients. Figure 4 shows outcomes for each preventive health measure assessed, with only 1 assessment included per patient. For patients who underwent more than 1 preventive care assessment, only the assessment with the most complete data was included. A total of 667 different preventive care recommendations were made. IBD nurses provided preventive care recommendations for pneumococcal vaccinations (72% [n = 161 of 223]), skin cancer screening (66% [n = 182 of 275]), bone mineral density testing (53% [n = 136 of 259]), and flu vaccinations (47% [n = 137 of 155]). Cervical screening recommendations in female patients, psychologist and dietician referrals, and smoking cessation advice were less commonly indicated.

Outcomes of preventive care assessments performed by inflammatory bowel disease nurses. n = 318 patients. Patients were omitted from the analysis for a particular preventive health measure if no data was available for that measure.
Economic Outcomes
The avoidance of ED reviews led to an estimated saving of AUD $20 010.00 (29 visits × $690.00 each), while the avoidance of outpatient clinic reviews resulted in an estimated saving of AUD $922 710.25 (1925 visits × $479.33 each). The total annual cost of IBD nurse salaries was AUD $377 239.19 and there were no additional significant costs of running the IBD nurse service. Overall, a net estimated saving of up to AUD $565 481.06 to the hospital was achieved. A further estimated saving of AUD $5356.70 to the healthcare system was achieved through the avoidance of GP reviews in the community (137 visits × $39.10 each). In total, the work achieved by the IBD nurse service equates to an estimated annual saving of up to AUD $570 837.95.
Use of the IBD Nurse Service by Special Patient Groups
Elderly patients (>60 years of age), pediatric-to-adult transition patients (<20 years of age), and newly diagnosed patients (disease duration of <1 year) were defined as special patient groups. Elderly patients were associated with significantly fewer IBD nurse contacts than nonelderly patients (median 2 vs 3; P = .0003). The number of nurse contacts did not differ between pediatric-to-adult transition and nontransition patients; however, the number of transition patients was low (n = 12) in this cohort. The number of nurse contacts was also not significantly different between patients with newly diagnosed disease vs those with a long-standing diagnosis.
Users of the IBD Nurse Helpline
A total of 878 encounters occurred in the context of the IBD nurse helpline (patient-initiated email or phone contact). Compared with patients who had nonhelpline encounters, patients who contacted the helpline were significantly more likely to be female (59% vs 50%; P < .001) and have UC (34% vs 28%; P = .003) and were less likely to be on biologic therapy (68% vs 81%; P < .001). Age, residential location, and disease duration did not differ significantly between helpline and nonhelpline users.
High Users of the IBD Nurse Service
Patients who had 9 or more encounters (top fifth percentile) were considered high users of the IBD nurse service (n = 47). Compared with non–high users (n = 635), high users (n = 47) were significantly more likely to be female (66% vs 51%; P = .05) and on biologic therapy (94% vs 66%; P < .001). Age, residential location, IBD diagnosis, and disease duration did not differ significantly between high users and non–high users.
A post hoc analysis of high user patients demonstrated that 30% (n = 14 of 47) had a documented psychiatric diagnosis or were on a psychiatric medication such as an antidepressant. High-user patients accounted for 36% (n = 17 of 47) of the total number of nurse encounters in which psychosocial support was provided.
Discussion
This study supports the value of a modern comprehensive IBD nursing service in facilitating timely access to high-quality care in the outpatient setting. While previous studies12-14 have examined the effect of IBD nurses on delivery of care, they evaluated smaller nursing services and focused on the economic benefits of nurses in reducing hospital admissions, ED visits, and clinic visits. We aimed to build on the current evidence by providing a comprehensive review of a larger IBD nursing service, with more recent data that capture the full spectrum of activities performed, including those that lead to outcomes that cannot be economically quantified.
This study highlights the value of IBD nurses in providing clinical care that likely led to the avoidance of a significant number of clinic reviews and improved the efficiency of delivery of IBD care. We estimated that 76% (n = 1925) of nurse encounters avoided a clinic review, equivalent to 37 clinic reviews avoided per week. If the activities performed in these encounters were instead undertaken by gastroenterologists during scheduled clinic time, this would equate to 17.5 weeks, or a third of a year’s worth of clinic sessions. In contrast to the substantial number of encounters that were estimated to avoid a clinic review, <5% of encounters led to an expedited clinic review, ED visit, or hospital admission. Nurses did not require gastroenterologist input in 65% of encounters. This demonstrates that they could provide timely and effective care to most patients independently, without the need for escalation to the ED or inpatient setting. Compared with similar studies,12-14 a higher number and proportion of encounters were estimated to have led to the avoidance of outpatient clinic visits in this study. This may be explained by the autonomy provided to our nurses to manage patient issues independently, with access to gastroenterologists for advice when needed. In other centers, IBD nurses may have a narrower scope of practice, with an expectation that all medical issues are managed in collaboration with a gastroenterologist.
Consistent with previous studies supporting the cost-effectiveness of IBD nurse roles,12-16 this IBD nurse service achieved an estimated net annual saving of up to AUD $570 837.95 (~USD $403 790). However, beyond these economic benefits, we aimed to highlight the noneconomic benefits of the nurse service in facilitating timely access to high-quality, best practice care. IBD is a complex and variable condition often associated with unexpected critical events resulting from the condition or its treatment. Given the unpredictable nature of the disease, specialist care is often required beyond routine clinic appointments. This is provided through the nurse-led helpline, which enables rapid, flexible, and direct access to tailored specialist advice, enabling early assessment and intervention to prevent disease deterioration. These helplines are strongly valued by IBD patients when seeking care for active symptoms17 and are associated with high patient satisfaction.18 In addition, IBD medications are potentially toxic and require systematic safety monitoring in accordance with established guidelines. This is facilitated by the nurses who follow up on pathology results for patients on biologics and thiopurines, enabling early detection of adverse events and poor adherence, as well as timely assessment of treatment efficacy.
Furthermore, IBD nurses provided education and counseling, answered patient questions, or updated patients about their disease, investigations, or treatment in 47% of encounters. This can have positive effects such as improved patient knowledge, increased medication adherence, earlier recognition of side effects, and greater disease self-management skills, which may lead to improved disease control and quality of life. Moreover, IBD nurses have a key role in providing psychosocial support. IBD patients experience high rates of psychiatric comorbidity,19 with up to a third experiencing anxiety symptoms and a quarter experiencing depressive symptoms.20 As psychosocial needs are often inadequately addressed by gastroenterologists and access to IBD psychologists is limited,21 IBD nurses often provide psychosocial care. Although psychosocial support was noted in only 2% of contacts in this study, we believe that this is underestimated due to underreporting in the medical records.
Compared with previous studies evaluating IBD nursing outcomes, this study is the first to report the outcomes of a comprehensive IBD nurse service that provides preventive care. Despite being a key quality of care measure in IBD, preventive care is commonly neglected by gastroenterologists, often due to time constraints and a greater focus on disease control.22 IBD patients have been found to receive preventive care at lower rates than general medical patients.23 IBD nurses are well placed to fulfill this gap in care. At this center, IBD nurses systematically screen all biologic patients every 6 months through a health maintenance questionnaire. A total of 667 different preventive health recommendations were made over a year. This indicates that an IBD nurse–led preventive care model can capture a significant number of patients who are not up to date with health screening or have unmet health maintenance needs, and can ensure these patients receive the appropriate counseling, investigations, or referrals. This has longer-term benefits in preventing disease- and treatment-related complications, which likely also results in downstream healthcare cost savings.
IBD nurses provide a key role in coordinating, supervising, and providing administrative support for patients on biologic therapy. In the Australian context, the use of biologics is strictly regulated, resulting in significant administrative requirements associated with prescribing biologics and ensuring that treatment is maintained on schedule. The governance of biologics therefore consumes a considerable portion of the workload of IBD nurses in Australia,24 particularly in high-volume centers. At this center, IBD nurses coordinated the delivery of biologics to 467 patients. A significant proportion of encounters involved biologic-related activities such as organizing applications and prescriptions, coordinating dispensing schedules and referrals for infusions, and TDM follow-up. While the processes associated with prescribing biologics may differ in other countries, the value and cost-effectiveness of an IBD nurse–led biologic service has also been substantiated in the United Kingdom.25 Given the increasingly complex biologic landscape and growing numbers of patients on biologics, there is likely to be an increasing demand for IBD nurses to facilitate biologic access.
Our study period also included the COVID-19 pandemic, which had a significant impact on the delivery of IBD care at our center. While many aspects of IBD nursing care such as the helpline were already delivered remotely pre-pandemic, face-to-face outpatient clinics shifted to a telehealth modality. We observed a higher number of nursing contacts with patients overall and a greater demand for the helpline compared with pre-pandemic. Nursing encounters relating to COVID-19 advice were not assessed separately in this study. However, nurses commonly provided counseling regarding COVID-19 vaccine safety and eligibility, immune response and infection risk with IBD medications, and medication management during COVID-19 infection. Further, nurses often provided closer remote follow-up of unwell patients over a longer period, given that patients could not be reviewed in-person. IBD nurses therefore had an important role in supporting ongoing access to high-quality care amid the challenges posed by the pandemic.
A large proportion of nurse encounters (21%) were dedicated to supporting a small group of patients defined as high users of the IBD nurse service. While this study was not designed to identify the characteristics of high users, we hypothesize that these patients are more likely to be female and have poorly controlled disease and greater psychiatric comorbidity. Females tend to seek and utilize healthcare more than males,26 and those with severe symptoms are more likely to access the helpline. Although only 30% of high users had a documented psychiatric comorbidity or were taking a psychiatric medication, we suspect that this is underreported. A previous study evaluating high users of an IBD telephone service found that they tended to be female, have Crohn’s disease, have elevated inflammatory markers, have chronic pain, and have psychiatric comorbidities.27 These patients were more likely to present to the ED or be hospitalized.27 By supporting this complex patient cohort effectively in the community, IBD nurses have the potential to improve their psychological well-being and prevent excessive ED visits and hospitalizations.
In this study, elderly patients were found to have fewer IBD nursing contacts than nonelderly patients. We hypothesize that this is partly attributable to elderly patients being more likely to seek medical care through traditional routes, such as visiting a GP, rather than accessing the helpline as the first point of contact. They may be unaware that the helpline exists or less comfortable with using technology to access healthcare. In addition, a previous retrospective study comparing elderly IBD patients with nonelderly IBD patients at our center found that elderly patients were less likely to be prescribed biologics.28 This may also explain the reduced nursing contact among the elderly, as a significant portion of nursing encounters involved biologic-related activities.
This study has several limitations. First, it is a retrospective study whose data rely on the quality and accuracy of nursing documentation and are subjective. However, to minimize bias, we used 2 reviewers with agreed-upon criteria and occasionally utilized a third to adjudicate interpretation of data. Second, this retrospective study lacks a control group. A matched cohort analysis, pre-post analysis, or prospective controlled trial comparing no intervention with our nursing interventions would provide stronger evidence for the effect of the nursing service. However, these were not considered ethical or practical in our real-world setting, given that our nursing service has well-established roles and most patients already have nursing contact. Moreover, the avoidance of ED, clinic, and GP reviews were hypothetical outcomes, which are subjective and difficult to predict in some cases. However, this methodology is consistent with previous studies which used similar outcomes,12-14 and we defined these outcomes with strict criteria. From an economic perspective, even if the number of ED, clinic, and GP visits avoided was overestimated by 50%, the nurse service would still be cost-effective. In addition, our calculated cost savings may be overestimated due to the high cost of outpatient clinic reviews used in our model. Although the impact of nurses on hospital admissions was not evaluated in this study, a prospective Australian study showed that formal IBD services that include an IBD nurse lead to reduced admissions.8 Therefore, our nursing service likely also achieves additional cost savings through preventing hospitalizations, which incur much greater costs than clinic visits. Furthermore, a third of encounters involved consulting a gastroenterologist who provided advice often outside of their clinic hours. This cost was not accounted for in our model, as it was difficult to estimate; however, we acknowledge that the availability of gastroenterologist support is critical to the success of a comprehensive nursing service. Finally, our results are based on a single tertiary center in Australia and may not be generalizable to IBD services in all jurisdictions. Some IBD services may not have the capacity to recruit as large a nursing team, and their nursing services may provide different roles and incur different costs.
Conclusions
A modern comprehensive IBD nursing service provides significant value to IBD services through contributing to improved patient outcomes and quality of care and reduced healthcare costs. IBD nurses have an important role within multidisciplinary models of IBD care, working independently to facilitate timely and high-quality patient-centered care. This study supports the expanding role of IBD nurses in the modern biologic era and justifies the need for greater funding and integration of IBD nurses in IBD clinical services.
Acknowledgments
The authors acknowledge the IBD nursing team at St Vincent’s Hospital Melbourne.
Author Contribution
C.B., N.Y., T.S., and S.F. conceived the study concept and design. N.Y. and K.W. acquired the data under the supervision of C.B. N.Y. and C.B. analyzed the data and drafted the manuscript. All authors were involved in interpretation of the data and critical revision of the manuscript for important intellectual content. All authors read and approved the final version of the manuscript.
Funding
None to declare.
Conflicts of Interest
None to declare.
Data Availability
The data underlying this article will be shared on reasonable request to the corresponding author.