1. Rohatinsky, Noelle PhD, RN, CMSN(c)
  2. Russell, Brooke BSN, RN
  3. Read, Kevin B. MLIS, MAS


The prevalence of inflammatory bowel disease is rising in persons older than 65 years. Although there is extensive literature on inflammatory bowel disease in older adults from a disease-related outcome, epidemiological, and treatment perspective, the older adult perspective on inflammatory bowel disease-related care needs and experiences is not well represented. This scoping review examines the existing literature regarding the care experiences of older adults living with inflammatory bowel disease. A systematic search was conducted using 3 concepts: older adults, inflammatory bowel disease, and patient experience. Seven publications met the inclusion criteria. Reported data include study design and methods, sample characteristics, and findings relevant to the research question. Two themes were identified: preferences for interactions with healthcare personnel and peer support networks, and barriers to accessing care for inflammatory bowel disease needs. An overarching concept across all studies was the need and request for individualized, patient-centered care where patient preferences are considered. This review highlights the need for more research on the older adult age group to guide evidence-informed practice that meets their individual inflammatory bowel disease care needs.


Article Content

Inflammatory bowel disease" (IBD) is a collective term to describe chronic immune-mediated inflammatory conditions (i.e., Crohn disease, ulcerative colitis), with no known cure. Globally, the prevalence of IBD is increasing (GBD 2017 Inflammatory Bowel Disease Collaborators, 2020; Kaplan et al., 2019). In adult populations, the United States (U.S.) has seen the prevalence of IBD increase by 123% from 214.0 per 100,000 in 2007 to 478.4 per 100,000 in 2016 (Ye, Manne, Treem, & Bennett, 2020). Recent data from Canada also suggest a high prevalence in IBD patients, equaling 725 per 100,000 in 2018 (Kaplan et al., 2019).



Management of IBD is complex and requires patients to have interactions with the healthcare system throughout their life span. Given the rising prevalence of IBD in North America, nurses will see an increasing number of individuals diagnosed with IBD and will likely interact with a greater number of individuals living with IBD who are 65 years and older. The older adult age group is one of the fastest growing groups of individuals with IBD (approximately one in 160 individuals) (Nguyen et al., 2019).


The goals of care for older adults living with IBD are similar to other age groups, including achieving disease remission, avoiding disease-related complications, improving quality of life (QOL), and preserving physical health and functional independence while weighing the risks and benefits of the various IBD management options (Ananthakrishnam, Donaldson, Lasch, & Yajnik, 2017; Arnott, Rogler, & Halfvarson, 2017; Taleban, Colombel, Mohler, & Fain, 2015).


Although there is extensive literature on IBD in older adults from a disease-related outcome perspective, an epidemiological perspective, and a treatment perspective, the older adult perspective on IBD-related care needs and experiences is not well represented in the literature. Patient experiences, preferences, goals for care, and suggestions for recommendation for improved service delivery are limited. Individualized treatment plans and targeted older adult IBD care, based on patient experiences and preferences, can improve patient outcomes and QOL (Kuenzig et al., 2019).


The limited research related to the experiences of older adults living with IBD provided the impetus for this scoping review. Patient experience is a complex concept to define. In a review of the literature, Wolf, Niederhauser, Marshburn, and LaVela (2014) proposed that patient experience consisted of the following elements: (1) the concept of patient experience is beyond assessing patient satisfaction; (2) patient experience is connected to patient expectations and whether those expectations were met; (3) patient experience is focused on individualization of care; and (4) patient- and family-centered care is integral to patient experience.


Purpose and Rationale for the Scoping Review

Scoping reviews are conducted to provide an overview on the existing literature related to a topic and systematically summarize the information and key gaps in the literature (Tricco et al., 2016). The purpose of this scoping review was to examine the literature for data about the care experiences of older adults living with IBD. When the experiences of older adults living with IBD are known, this information can be used to guide individualized care for this age group and provide input into targeted health service delivery (Vutcovici et al., 2021). Knowing this information can guide evidence-informed practice, applying up-to-date evidence in combination with nursing clinical expertise and patient preferences to guide care decisions (Titler & Cameron, 2018). As a result, nurses who interact with older adults living with IBD and their family caregivers can assess unmet needs, organize plans of care, and initiate interventions accordingly. Also, areas of future research can be identified once the extent of the literature in this area is known and gaps are identified.



Scoping Review Framework

The scoping review framework selected for this review was developed by Peters et al. (2020), which was expanded from the seminal works of Arksey and O'Malley (2005) and Levac, Colquhoun, and O'Brien (2010). Peters et al. (2020) outlined nine steps in their scoping review framework: (1) defining and aligning the objective(s) and question(s); (2) developing and aligning the inclusion criteria with the objective(s) and question(s); (3) describing the planned approach to evidence searching, selection, data extraction, and presentation of the evidence; (4) searching for the evidence; (5) selecting the evidence; (6) extracting the evidence; (7) analysis of the evidence; (8) presentation of the results; and (9) summarizing the evidence in relation to the purpose of the review, making conclusions, and noting any implications of the findings. This review follows the aforementioned steps. Steps 1-7 are described in the "Methods" section and the remaining steps are located in the "Results" (Step 8) and "Discussion" (Step 9) sections of this article.


The Scoping Review Objective and Research Question

The objective of this scoping review was to investigate the extent of the literature regarding the care experiences of older adults living with IBD. Thus, the research question was as follows: "What is known from the existing literature about the care experiences of older adults living with IBD?"


Inclusion and Exclusion Criteria

The inclusion and exclusion criteria for this review are outlined in Table 1.

Table 1 - Click to enlarge in new windowTABLE 1. Inclusion and Exclusion Criteria

Searching for the Evidence

The search strategy procedures and documentation adhere to the PRISMA-S extension for reporting literature searches in systematic reviews (Rethlefsen et al., 2021). The strategy focused on three major concepts: older adults, IBD, and the patient experience. A concept table was developed to identify all relevant key words and synonyms that would be representative of each concept (Table 2). In addition to key words, a preliminary Ovid MEDLINE search was completed to identify suitable Medical Subject Headings (MeSH) that should be included for each concept. The concept table served as the basis for the comprehensive search strategy. A preliminary search strategy was developed for Ovid MEDLINE and was peer reviewed by a health sciences librarian not affiliated with this study using the PRESS review method for electronic search strategies (McGowan et al., 2016). Using the feedback received in the PRESS review, the search was revised and applied across all databases identified for this scoping review.

Table 2 - Click to enlarge in new windowTABLE 2. Search Strategy Concepts

The final revised search strategy was run in the databases Ovid MEDLINE and In-Process & Other Non-Indexed Citations (1946 to January 24, 2022), Ovid EMBASE and EMBASE Classic (1947 to January 24, 2022), Ovid APA PsycINFO (1806 to Week 3 of January 2022), EBSCO CINAHL (1937 to January 25, 2022), and the Web of Science Core Collection (Current Contents Connect, CAB Abstracts, Data Citation Index, Derwent Innovation Index, FSTA-the food science resource, KCI Korean Journal Database, MEDLINE, Russian Science Citation Index, SciELO Citation Index, Zoological Record) (1900 to January 24, 2022). A gray literature search was conducted by adapting the comprehensive search strategy to the following online resources using Google's "site": search function ('s Colitis Canada, Crohn's and Colitis Australia, Crohn's and Colitis United Kingdom, Crohn's and Colitis Foundation USA, and the Canadian Digestive Health Foundation. Completed search strategies for each database and the gray literature are present as Supplemental Digital Content (available at:


Selecting the Evidence

Articles were either exported from each database or manually added to Endnote Version X9. Articles were deduplicated in Endnote using a validated predefined method designed for systematic reviews (Bramer, Giustini, de Jonge, Holland, & Bekhuis, 2016). After deduplication, the articles were imported into Covidence ( for title and abstract and full-text screening by two authors (N.R., B.R.). Screening conflicts were resolved through discussion between the two authors. For articles that remained after the full-text screening process, their reference lists were hand-searched to identify relevant studies. The same articles also underwent cited reference searching using the functionality available in the Web of Science Core Collection (


Extracting the Evidence

Two tables were created to organize key information retrieved from the publications. Table 3 includes information on author, country, year of publication, sample, setting, methods, outcomes, and a general review of the key findings for older adults. Because all of the publications did not solely focus on the older adult age group, Table 4 was developed to provide a more in-depth understanding of the key findings pertaining to older adults with IBD to address the scoping review research question.

Table 3 - Click to enlarge in new windowTABLE 3. Studies Examining Care Experiences of Adults 65 Years or Older With IBD
Table 4 - Click to enlarge in new windowTABLE 4. Summary of Articles Meeting Inclusion Criteria

Data Analysis of the Evidence

Inductive content analysis (Elo & Kyngas, 2008) was used to analyze data from the publications in order to answer the research question. The goal of content analysis is to provide a broad description of the topic of interest. Through the content analysis process, large amounts of data are grouped into categories (Elo & Kyngas, 2008).



There were seven publications between 2003 and 2018 that met the criteria of inclusion for this scoping review (see Figure 1 for PRISMA diagram). Studies originated in the United Kingdom (n = 5), Sweden (n = 1), and U.S. (n = 1). Articles were retrieved from a variety of journals: Inflammatory Bowel Diseases (n = 2), BMJ Quality & Safety, Health Technology Assessment (n = 1), Journal of Clinical Nursing (n = 1), Journal of Crohn's and Colitis (n = 1), Nursing Times (n = 1), and Quality and Safety in Health Care (n = 1). Study designs included qualitative (n = 3), quantitative (n = 2), and mixed methods (n = 2).

Figure 1 - Click to enlarge in new windowFIGURE 1. Inflammatory bowel disease scoping review PRISMA flow diagram. From "Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement," by D. Moher, A. Liberati, A. Tetzlaff, D. G. Altman, and The PRISMA Group, 2009, PLoS Medicine,

Patients with IBD were the focus of the studies, with one article including the perspectives of patients and their family members (Hashash et al., 2016). No studies exclusively featured a sample population of adults 65 years or older. Therefore, information for this review focused on the subpopulation of older adults participating, and needed to be extracted for the review. Content analysis of the seven publications generated two categories that described the care experiences of older adults with IBD: (1) preferences for interactions with healthcare providers (HCPs) and peer support services; and (2) perceived barriers to accessing care and disease-related support.


Preferences for Interactions With Healthcare Providers and Peer Support Networks

Five articles in this scoping review examined older adult preferences for interactions with HCPs (Baker, Lee, Jones, Brown, & Lobo, 2018; Kennedy et al., 2003; Pihl Lesnovska, Hollman Frisman, Hjortswang, & Borjeson, 2017; Rogers, Kennedy, Nelson, & Robinson, 2004; Younge, Lindsay, Langmead, & Czuber-Dochan, 2015). Notably, older adults preferred to interact with HCPs who demonstrated strong interpersonal communication skills (Kennedy et al., 2003; Pihl Lesnovska et al., 2017; Younge et al., 2015). Pihl Lesnovska et al. (2017) indicated that older adults found a sense of security was created when HCPs took the time to ask open-ended questions and presented themselves in a calm and unhurried manner. Kennedy et al. (2003) examined the experiences of patients utilizing a new open access system for IBD management. One of the older adults found satisfaction interacting with HCPs when they could ask questions, felt listened to, and were met with reassurance and sympathy (Kennedy et al., 2003).


Interacting with the same HCPs over time was deemed important for older adults (Pihl Lesnovska et al., 2017). When examining pros and cons of care, older adults with multiple comorbidities preferred the more "holistic" approach that included understanding of the effects of all the comorbidities on the IBD process; the specialization of care meant no one HCP took responsibility for diseases unrelated to IBD (Pihl Lesnovska et al., 2017).


There was a preference for meeting face-to-face with HCPs over virtual methods such as telephone or e-mail (Kennedy et al., 2003; Rogers et al., 2004; Younge et al., 2015). In-person appointments with HCPs provided a sense of certainty and security (Kennedy et al., 2003; Rogers et al., 2004). Younge et al. (2015) explored the levels of engagement and satisfaction with changes in follow-up approaches in adults older than 60 years and found that half of respondents disagreed with telephone appointments replacing traditional face-to-face visits.


Shared decision-making with HCPs was mentioned in two studies (Baker et al., 2018; Pihl Lesnovska et al., 2017). Pihl Lesnovska et al. (2017) found that while most participants in the overall study wanted to play an active role in decision-making about certain aspects of their care such as medication dosage, some older adults did not want or expressed concern about being more actively involved in the decision-making process with their HCPs. Baker et al. (2018) noted that when presurgical counseling was provided for informing a decision for medical or surgical management of ulcerative colitis, the older adults in the study perceived the clinicians to be promoting a specific treatment preference and not allowing for shared decision-making.


Two studies mentioned older adult preferences for interacting with peer support services for IBD management (Baker et al., 2018; Hashash et al., 2016). Baker et al. (2018) noted that the respondents who were 65 years or older were the only individuals in the study who did not desire peer support for optimizing IBD management. However, another study that looked at the feasibility of a volunteer-based in-hospital peer support program mentioned that an older adult who had experienced many hospitalizations and previous surgeries was highly satisfied and very grateful for the peer support program (Hashash et al., 2016).


Perceived Barriers to Accessing Care and Disease-Related Support

Five studies mentioned potential barriers older adults may face when attempting to access healthcare services for managing their IBD (Kennedy et al., 2003; Ludlow, Hurley, & Sunil, 2009; Pihl Lesnovska et al., 2017; Rogers et al., 2004; Younge et al., 2015). One study (Kennedy et al., 2003) and its corresponding substudy (Rogers et al., 2004) reported a general preference for a newly implemented open access system of self-referral to IBD outpatient services. This new system provided an opportunity for patients to self-refer to medical services instead of relying on a more traditional system of regular appointments set by hospital services. However, two older adults were challenged by the new system and expressed a preference for the traditional fixed appointment format (Kennedy et al., 2003; Rogers et al., 2004). One older adult required extra encouragement to navigate the new system and disliked the assertiveness needed to negotiate an appointment or initiate telephone assistance, even when an emergent medical need was identified (Kennedy et al., 2003; Rogers et al., 2004).


Timely access to IBD care services was also deemed important (Pihl Lesnovska et al., 2017). In this study, an older adult spoke about the experience of attempting to access medical assistance for an IBD care need as follows: "I mean it would have been very positive if I could have phoned when I wanted. But in 9 cases out of 10 I didn't get through. It's important that the patient make contact by phone" (Pihl Lesnovska et al., 2017, p. 3681). Older adults expressed concerns that their phone messages were not always reaching HCPs and often individuals were relying on administrative staff to relay messages that did not always seem to get through to the appropriate HCP (Kennedy et al., 2003; Pihl Lesnovska et al., 2017; Rogers et al., 2004; Younge et al., 2015).


Two studies suggested that lack of access, familiarity, or trust in certain technologies, such as cell phones and computers, may also impede access to certain care services for older adults with IBD (Baker et al., 2018; Ludlow et al., 2009). One study, examining whether switching to text and e-mail reminders for laboratory test monitoring would help improve health service delivery, showed that those who chose to remain with phone and e-mail reminders did so because they did not have access to a computer or cell phone (Ludlow et al., 2009). However, the authors stated that some older adults did choose text and e-mail messaging reminders (Ludlow et al., 2009). Another study that explored the informational preferences and needs of patients deciding between surgery and medical management for ulcerative colitis reported that the two participants older than 65 years were the only ones in the study who were skeptical of the Internet for disease-related information and did not use it as a source of information (Baker et al., 2018).


Gaps in the Literature

Very few articles met the inclusion criteria in this review. Of the seven articles included, no studies focused exclusively on the target cohort of 65 years or older individuals with IBD. Some of the included studies reported findings that described older adult preferences and experiences that were different from those of the other age cohorts in the study (Baker et al., 2018; Kennedy et al., 2003; Ludlow et al., 2009; Pihl Lesnovska et al., 2017; Rogers et al., 2004).


The frequency of interaction with the healthcare system and older adults' assessment of satisfaction with their care was underreported. Most of the included studies explored patient reactions to changes in health service delivery, and little detail was provided on the actual care experience of older adults with IBD. Only one study was conducted with a North American population. Finally, there were no developmental or life stage considerations mentioned in the studies. For example, there were no considerations for challenges with driving limitations, loss of senses, retirement, or loss of spouse or other support networks as they related to IBD care experiences.


Discussion and Implications for Nursing Practice

Findings from the scoping review preliminarily indicate that the experiences of older adults with IBD are relatively similar to the preferences reported for other age groups. However, because of the limited amount of information available on the older adult age group experiences and preferences for care, and the lack of available articles focused solely on the older adult age group, the authors hesitate to draw this conclusion with certainty. An overarching concept throughout all the studies is the need and request for individualized, patient-centered care where patient preferences are considered. Interestingly, none of the studies were patient-oriented in nature where older adult patients were considered active and equal members of the research team.


Older adults in these studies reported wanting to feel like they had time to express their concerns, raise questions during appointments, and believe that they were listened to. This interest by patients to be actively involved in their care and have bidirectional communication is not uncommon with IBD care in general (Jelsness-Jorgensen et al., 2016) and influences perceived quality of care (Irving et al., 2018). However, when comparing provider and patient satisfaction with the levels of communication, providers rate greater satisfaction levels with communication than do patients (Yan et al., 2020), suggesting that more work in the area of communication between patients and providers is necessary. Permitting more time during appointments with older adults could allow for greater communication to occur. However, providers juggle large caseloads and may experience limits with remuneration, so this suggestion may not be feasible for the care context.


Given the complexity of IBD and older adults with multiple comorbidities, older adults preferred holistic care from their providers. They expressed the desire to have consistency in providers where holistic care was integrated by an interdisciplinary team. IBD nurses are integral members of this team working alongside practitioners such as gastroenterologists, colorectal surgeons, dieticians, psychologists, and pharmacists (Lamb et al., 2019; Pena-Sanchez et al., 2017). Interdisciplinary teams can offer comprehensive, quality care to persons with IBD. By having IBD nurses as the coordinators of care for individuals with IBD, consistency can be provided (Kemp et al., 2018).


Within the scoping review, older adults preferred face-to-face appointments over telephone and virtual appointments for their IBD care. The studies under review were conducted before the COVID-19 pandemic and before technology was readily implemented into routine IBD care. Virtual care (i.e., telephone and video appointments) had been underutilized in most countries before the pandemic and many appointments were changed from face-to-face to virtual during the pandemic, so patient opinions may have changed with regard to virtual care preferences (Lees, Regueiro, & Mahadevan, 2020). There is a high satisfaction rate with using virtual care for IBD-related appointments from the perspective of patients and providers generally (Jones et al., 2021; Taxonera et al., 2021). However, more research is needed to determine whether older adults continue to prefer face-to-face appointments specifically now that virtual care management is more commonly practiced in society.


The decision to be more actively involved in care varied in the scoping review studies, highlighting the need for individualized care and taking patient preferences into consideration. Equally variable was the request for peer support among older adults with IBD. Although peer support is considered helpful for individuals with chronic illness (Hossain et al., 2021), there is limited research on the effectiveness of peer support among individuals with IBD, particularly from an older adult perspective.


Older adult participants within the scoping review described challenges with contacting care providers, accessing appointments, and navigating new appointment systems. Nurse-led advice lines may be a way to mitigate these challenges. IBD nurses can provide advice via telephone or e-mail to persons with IBD who require access to specialist support but not necessarily requiring an appointment with a gastroenterologist (Lamb et al., 2019). Nurse-led advice lines are part of the standard of care within the United Kingdom and Australia but less often utilized in North America (Chauhan et al., 2021; Lamb et al., 2019). Both patients and IBD nurses are satisfied with nurse-led advice lines and their use has been shown to improve patient outcomes and reduce hospitalizations (Kemp et al., 2018; Leach et al., 2014). Advice lines could offer older adults avenues to access care and possibly appointment arrangements if their condition warranted.


Within the scoping review articles, there was a need for education related to understanding and interacting with technology for IBD-related care such as accessing blood work results or appointment reminders and determining the credibility of Internet sources. IBD nurses are experts in assessing patient learning needs, providing related education, and directing patients to credible sources of information and so would be uniquely positioned to provide this support (Kemp et al., 2018).


Suggestions for Future Research

There are several suggestions for future research. Studies focusing specifically on the experiences and perceptions of older adults living with IBD are needed. Greater research is required on older adults' perceptions of and expectations for IBD care delivery, the impact of the interdisciplinary care team on older adult care, the barriers to IBD-related care for older adults, and improving health-related QOL for this age group. There is a critical need for patient-oriented research that investigates what older adults perceive as important regarding their care experiences and health system interactions.


In the scoping review, there were limited articles focusing on older adults' care experiences within the North American context; this type of research may help uncover geographic-specific experiences, differences, or strategies for care enhancement. Finally, because of the increasing use of virtual technology for IBD care delivery, greater research is required to gauge the perceptions and experiences of older adults living with IBD for this type of care provision.



A study limitation was that searching was limited to English-only articles and thus additional non-English articles may have been missed. The articles available were also limited by the databases available through the authors' institution. Another limitation was the coding of MeSH headings and search terms within the chosen databases. This limitation was mitigated somewhat by the comprehensive use of key words within the search strategy and the hand-searching of reference lists of articles during the full-text review process. Also, the sample size of older adults within each of the included studies was limited. Thus, it is hard to generalize about the experiences of older adults living with IBD.



This scoping review explored the care experiences of older adults living with IBD. The articles focused on the following: (1) preferences for interactions with HCPs and peer support services; and (2) perceived barriers to accessing care and disease-related support. However, it is evident that there is limited research on the experiences of older adults living with IBD, and further research is required to address this knowledge gap. With the increase in the numbers of individuals living with IBD entering older adulthood, it is important that more research focuses on this age group to guide evidence-informed practice in order to meet their specific needs. IBD nurses are at the forefront of care, having frequent interactions with older adults with IBD; they have the potential to create quality care experiences and positive patient outcomes.



This study was funded by the College of Nursing, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.




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