Inflammatory bowel disease (IBD) is defined as a group of chronic inflammatory disorders of unknown cause affecting the gastrointestinal tract and encompassing two diseases: Crohn disease and ulcerative colitis (Thoreson & Cullen, 2007). IBD affects more than 5 million people worldwide and is considered a global disease with progressively increasing incidence and prevalence (Burisch et al., 2019).

Although the causes of IBD are not known and, as a result, a cure has not yet been found, it is recognized as an immune mechanism disorder possibly triggered by a combination of genetic and environmental factors. These factors include very scrupulous childhood hygiene, smoking, or drugs (such as anti-inflammatory drugs, oral contraceptives, or antibiotics) (Kuhnen, 2019; Van Der Sloot, Amini, Peters, Dijkstra, & Alizadeh, 2017). IBD is commonly manifested in adolescents or young adults, and often follows a course of unpredictable remissions and relapses (Kemp et al., 2018). The significant personal and social impact of this chronic condition is evident in the use of health resources, economic cost, and labor impact.

Patient management with IBD requires a multidisciplinary team and patient-centered approach (Panes et al., 2014; Siegel, 2018). This paradigm should be based on needs, objectives, and preferences of each patient. For patients to be able to actively participate in the decision-making of their therapeutic management, it is necessary that they have an adequate level of knowledge about their disease (Baars et al., 2010).

Both quality of care standards in IBD-from the European Crohn's and Colitis Organisation and the latest consensus standards of healthcare for IBD patients in the United Kingdom (UK) published by Kapasi et al. (2020)-agree that optimizing the quality of care in IBD involves information and education after diagnosis (Fiorino et al., 2020; Kapasi et al., 2020).

Disease-related knowledge of IBD is also related to positive aspects such as the following: positive coping with the disease, positive impact on adherence, a better perception of general health, as well as decreased anxiety and patient worry (Moradkhani, Kerwin, Dudley-Brown, & Tabibian, 2011; Sephton, Kemp, & Ridgway, 2016; Waters, Jensen, & Fedorak, 2005). A recent study found that higher disease-related knowledge could reduce the requirement of step-up therapy in IBD (Park et al., 2020). In addition to the individual benefits of knowledge of the disease, education has been described as an important tool for patient evolution, and a direct relationship between level of knowledge and healthcare cost can be made (Colombara, Martinato, Girardin, & Gregori, 2015).

Concurrently, with the reported benefits of greater knowledge of IBD, a high percentage of patients identify lack of information as one of the main concerns regarding their condition (Daher et al., 2019; Pittet et al., 2016). A recent review showed that patients expressed a greater need for knowledge at the time of diagnosis (Al Khoury et al., 2022).

Education provided by a specialist doctor or nurse was the most popular medium (Arguelles-Arias et al., 2017; Burisch et al., 2014; McDermott et al., 2018; Pittet et al., 2016). And in those recently diagnosed, patients primarily garner information from the doctor and/or the internet, though two-thirds of patients prefer information from a nurse specialist (Kemp et al., 2018).

The Nurses European Crohn's and Colitis Organisation defines the advanced IBD nurse as one who works as part of the IBD multidisciplinary team enhancing patient care and experience, and providing efficient, holistic, and accessible care. The advanced IBD nurse's role, growing substantially across Europe, additionally includes education, research, service development, and leadership (Burisch et al., 2014; Kemp et al., 2018).

Patient education is one of the most important pillars of a nurse's role, and has been developed based on the clinical and educational profiles of nursing professionals (Kemp et al., 2018; Zernike & Henderson, 1998). However, it should be noted that Arguelles-Arias et al. found that only 19% of patients in their study mentioned nurses as a source of information (Arguelles-Arias et al., 2017).

As far as we know, there is no standardized patient education program in the clinical practice of IBD. There are several studies that evaluate the effectiveness of educational programs of eight to nine sessions between 1 and 3 hours outside the usual scope of care (Quan, Present, & Sutherland, 2003; Sephton et al., 2016; Waters et al., 2005). However, there exists a knowledge gap about educational programs for newly diagnosed individuals living with IBD.

In a preliminary search of PubMed, the Cochrane Database of Systematic Reviews, PROSPERO, and the Joanna Briggs Institute (JBI), evidence synthesis was conducted. One critical review and one systematic review protocol on education interventions were identified. However, both only focus on educational interventions for long-term diagnosed patients, not for those newly diagnosed (Barlow, Cooke, Mulligan, Beck, & Newmann, 2010; Heidari, Shahsavari, Jafarnejad, & Yeganeh, 2018). Therefore, it is unclear what kind of education intervention is most effective in newly diagnosed patients with IBD.

The period shortly after diagnosis is a time when patients are just beginning to deal with the challenge of coping with a serious and chronic illness. This is also the time when education may be easily overlooked. For that reason, a scoping review was conducted to systematically map the research conducted in this area, as well as to identify any existing gaps in knowledge. The aim of this scoping review is to identify and describe educational interventions in newly diagnosed IBD patients and identify their efficacy.

Methods

The framework provided by Arksey and O'Malley, subsequently refined by Colquhoun et al., was used as a basis for the scoping review design (Arksey & O'Malley, 2005; Colquhoun et al., 2014). The Preferred Reporting Items for Systematic Reviews and Meta-analysis for Scoping Reviews (PRISMA-ScR) reporting recommendations and their checklist (Tricco et al., 2018) were used. The final protocol was registered prospectively with the Open Science Framework on December 23, 2020 (https://osf.io/9b8xk) (Navarro, Ibarz, Basagana, Selva, & Espart, 2020).

Formulating the Research Question

As recommended by JBI, the focus of the review addresses the specific elements of the Population, Concept, and Context (PCC) framework (Peters et al., 2020). The following research questions were formulated: Primarily, what research exists about educational interventions for patients newly diagnosed with IBD? Secondary questions included: Which educational strategies are most effective? How are they measured? When should they be performed? Who should conduct them? Where should they take place?

Identifying Relevant Studies

Relevant studies were identified by searching published articles from 1985 to July 2020. Criteria for inclusion were that articles had to be written in English, French, or Spanish; involved patients recently diagnosed with IBD (<2 years from diagnosis) and described all types of educational interventions including educational groups, readings, videos, etc. Experimental and quasi-experimental study designs including randomized controlled trials, nonrandomized controlled trials, before and after studies, and qualitative studies were included. Articles were excluded if they did not fit into the conceptual framework of the study or if the participants were younger than 18 years of age.

The following databases were searched: PubMed, CINAHL, Web of Science, Cochrane Library and JBI EBP Database. Sources of gray literature were also included, such as Teseo, Tesis Doctorales en Red, OPENGREY.EU, and PROSPERO. The authors of the studies were contacted if more information was needed. An initial limited search of PubMed was undertaken to identify articles on the topic. The search strategy comprised two components (IBD and educational intervention). Text words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles were used to develop a full search strategy for other databases and sources. The main search strategy was conducted by a librarian (M.B.). The search strategy for PubMed can be found in Supplemental Digital Content 1, http://links.lww.com/GNJ/A81. Additionally, a secondary search was carried out by reviewing the bibliographical references cited in the studies that were included. The final search results were exported into Mendeley Version 1.19.4 and the full dataset was checked for duplication.

Selecting Studies

Following a pilot test, titles and abstracts were then screened by two independent reviewers for assessment against the inclusion criteria for the review. Potentially relevant sources were retrieved in full and their citation details collected and managed using REDCap electronic data capture tools hosted at Vall d'Hebron Institut de Recerca (Levac, Colquhoun, & O'Brien, 2010). Two authors (E.N. and A.I.) independently screened titles, abstracts, and full texts for inclusion. In case of uncertainties, the other author (L.S.) was contacted to make a final determination.

Data Extraction

Data charting was done by two reviewers using a data extraction tool developed for this study. Results were reviewed and discussed with the data charting form updated in an iterative process. Data were captured using REDCap. Data extracted included specific details about study characteristics (country, aim, participants, intervention, context, study methods, and key findings relevant to the review questions), which can be viewed in Supplemental Digital Content 2, http://links.lww.com/GNJ/A82. Because scoping reviews attempt to map available studies and guide further research, we deliberately set aside an appraisal of the included studies' methodological quality which is consistent with scoping review methods.

Results

Identification and Selection Process

Database and hand searching in July 2020 as well as backward and forward citation tracking yielded 650 references. After eliminating duplications (n = 477) and excluding 461 articles by quickly reviewing their titles and abstracts, the number of potentially relevant articles was reduced to 16. Figure 1 shows the detailed search, study selection process, and the reasons for exclusion of 12 articles, resulting in 4 articles used for analysis.

FIGURE 1. Flowchart of search results according to the PRISMA standard.

Study Characteristics

The results section refers to the identified studies meeting our inclusion criteria (Haapamaki, Heikkinen, Sipponen, Roine, & Arkkila, 2018; Jaghult, Larson, Wredling, & Kapraali, 2007; Kamat, Rajan Mallayasamy, Sharma, Kamath, & Pai, 2018; Oxelmark, Magnusson, Lofberg, & Hilleras, 2007). The four studies selected were carried out in three different countries: three in Nordic countries and one in India. The articles included in the final review were intervention studies: three randomized controlled trials and a quasi-experimental pre-/post-test. Study characteristics and methodological details of the studies are summarized in Table 1.

TABLE 1. Overview of the Four Selected Studies

The sample populations consisted of IBD patients, but only in one (Jaghult et al., 2007) study was the sample from newly diagnosed patients; the other studies were also selected because there were newly diagnosed patients in their samples. The sample size varied between 44 and 195 patients. The proportion of female participants was similar except in the Kamat et al. (2018) group, where the female proportion was less than 30%.

Interventions: Which, Who, Whom, When, and Where

Group intervention was the choice for three of the four studies. The Haapamaki et al. study consisted of outpatient and inpatient adaptation courses for IBD patients to help them adjust to living with their disease. The course emphasizes various group activities and lectures as well as an adapted course (shorter than the regular adaptation courses) that focused on peer support. All courses included a multidisciplinary assessment by a physician, physiotherapist, and nutritionist; if necessary, a psychologist and social worker were also included. The duration of the regular courses was 10-12 days, and the shorter, 5 days (Haapamaki et al., 2018).

A multiprofessional group-based, education program was studied by Jaghult et al. (2007). The program consisted of three structured 3-hour sessions prepared by a specialist nurse, gastroenterologist, dietician, and medical social worker. The specialist nurse was the coordinator and attended every meeting. In every session there was time to ask questions and discuss personal experiences. At the last session, the patients received a written summary of the contents of the education program (Jaghult et al., 2007).

Oxelmark et al. (2007) proposed an integrated medical and psychological/psychosocial group-based intervention program. It comprised nine different sessions (once a week, each session lasted for 90 minutes) for 3 months, with lectures alternating with group therapy at an outpatient clinic. The lectures comprised information and education about the diseases presented by the gastroenterologist and specialist nurse and included time for questions and discussions. The group therapy sessions were led by the medical social worker/psychotherapist (Oxelmark et al., 2007).

An 8-minute educational video session was the intervention used by Kamat et al. (2018). Patients were visited at an outpatient department by the treating gastroenterologist. The educational video session had information related to the nature of the illness, its symptoms, treatment, need for long-term follow-up, and the benefits of such follow-up through to the completion of therapy. Apart from the video, patients received standard care (Kamat et al., 2018).

The contents of the different interventions and role of each professional who participated are described in Tables 1 and 2. Only Oxelmark et al. (2007) defined the role of each professional in the educational intervention, including when and what they did.

TABLE 2. Overview of the Four Selected Studies

The contents of the interventions were the same for all samples, regardless of the time of evolution of the disease. And none described how the contents were decided or selected.

Impact of Educational Intervention

The impact on IBD patients was measured by collecting data on health-related quality of life (HRQoL) in all studies, emotional-related outcomes like level of depression and anxiety (Haapamaki et al., 2018; Kamat et al., 2018), subjective psychological well-being (Haapamaki et al., 2018), coping capacity (Jaghult et al. 2007; Oxelmark et al., 2007), and worries and concerns (Jaghult et al., 2007). In two studies, satisfaction with the intervention was evaluated (Haapamaki et al., 2018; Jaghult et al., 2007; Kamat et al., 2018; Oxelmark et al., 2007). No studies measured patient knowledge either before or after the interventions.

Preinterventional baseline data were collected. Postinterventional evaluation times were 6 and 12 months after the intervention. In the study by Haapamaki et al. (2018), data were also collected after the intervention.

Adaptation training (Haapamaki et al., 2018) appears to have a positive impact on the psychological well-being of IBD patients. No significant change in healthcare utilization or number of sick leave days was observed. In Jaghult et al. (2007) and Oxelmark et al. (2007), studies showed similar results, with no significant differences on the psychological well-being being found when comparing control and intervention groups. However, these studies evaluated interventions that were highly appreciated by the patients. Kamat et al. (2018) detected changes only in improving compliance regarding follow-up visits and depression scores (Haapamaki et al., 2018; Jaghult et al., 2007; Kamat et al., 2018).

Discussion

The aim of this scoping review is to map the research about educational interventions in newly diagnosed IBD patients. Up to the present, only four studies are published with patients who have less than 2 years of evolution with the illness. This review shows that a great deal of research work has been conducted on IBD patient education, more than 400 articles. However, of the four studies evaluated where there were patients with at least less than 2 years since initial diagnosis, only one was focused specifically on newly diagnosed IBD patients (Jaghult et al., 2007).

The four identified studies are characterized by enormous heterogeneity. Consequently, interventions and results are hardly comparable, making it impossible to identify "best practice" evidence. However, some ideas can be drawn from the data collected.

First, these few results about the topic contrast with the published consensus, which highlights that newly diagnosed patients need to acquire knowledge, skills, and information that will allow them to choose what is best for them. Skills-based health education should enable people to apply knowledge and develop attitudes and skills to make positive decisions and take actions to promote and protect one's health and the health of others (Kapasi et al., 2020; Kemp et al., 2018; World Health Organization, 2003).

Also, from a patient perspective, there was a greater need for knowledge in connection with diagnosis (Lesnovska, Borjeson, Hjortswang, & Frisman, 2014). For patients, it was highly significant for them to receive information on topics such as how to live with the disease with regard to self-management, as well as specific information on the disease. It should be noted that a majority indicated they received little or no information in many areas they judged to be very important (Bernstein et al., 2011; Larsson, Loof, & Nordin, 2017; Lesnovska et al., 2014).

Second, there is much evidence regarding a wide variation in the need for knowledge (Daher et al., 2019; Wong et al., 2012). It seems that the reviewed studies do not consider the learning needs of patients, nor the design of educational interventions for varying patient profiles (from the newly diagnosed to those longstanding). The same topics were studied in a rather generalized way without considering individual characteristics (Table 2).

It should be highlighted that it is difficult to find studies where individual characteristics such as age, social context, or gender have been considered to design educational interventions. Regarding age, Daher et al. (2019) explored whether different patient profiles correlate with different informational needs; for instance, patients newly diagnosed at age 50 or above showed less interest in work disability or stress coping, and patients younger than 21 years showed less interest in managing symptoms or therapy complications (Daher et al., 2019). However, gender was at times mentioned as a determinant of health, but was never identified and integrated as a factor critical to successful health promotion (Gelb, Pederson, & Greaves, 2012). Nurses need to be aware of the gendered nature of chronic illness management (Van Mens-Verhulst, Radtke, & Spence, 2004).

Third, there are different strategies to educate patients with chronic diseases: focus on individual, group-based or peer-to-peer interventions-face-to-face, via telephone, or online (Barlow et al., 2010; Yin, Hachuel, Pollak, Scherl, & Estrin, 2019). Nevertheless, in this review, the multiprofessional group-based intervention program stands out. Educational interventions were conducted by an multidisciplinary team formed by professionals in different roles depending on the study. However, only the Oxelmark et al. (2007) authors described who, where, or when patient education must be conducted.

Only half of the studies had nurses on the multidisciplinary team (Haapamaki et al., 2018; Jaghult et al., 2007; Kamat et al., 2018; Oxelmark et al., 2007). To advocate for the crucial role that the advanced practice nurse can play in patient education for those newly diagnosed with chronic disease, we would proffer to share the Manning definition of advanced practice nurse as an educator: The Advanced Practice Nurse possesses a broad knowledge base and the learned ability to apply knowledge of pathophysiology, pharmacology, change theory, learning theory, process of aging, motivational techniques, and cultural diversity to diagnose client learning needs, impart information, and ensure learning (Manning, 2004). In countries where an IBD nurse network exists alongside the IBD specialist, patients are increasingly educated about their disease and the medications utilized to treat it (O'Connor, Gaarenstroom, Kemp, Bager, & van der Woude, 2014).

These programs have been appreciated by patients who think that multiprofessional teams could provide information on various disease-related areas (Larsson et al., 2017). And perhaps there is a sense of connection between the interprofessional team that positively impacts patients as seen in peer support interventions (Embuldeniya et al., 2013). However, to date there is not enough evidence to know what types of educational strategies produce maximum benefits for chronic patients (Cooper, Booth, Fear, & Gill, 2001). No published article has been found on education in newly diagnosed chronic disease patients within the last 10 years (2012-2022).

Fourth, the educational interventions were poorly described, with only the Oxelmark et al. (2007) authors accurately describing which professionals taught which subject. Contents and forms of education are crucial and can influence the efficacy of interventions (Tu, Xu, & Du, 2015). It is necessary to consider carefully the timing, content, and appropriateness of information provision (Barlow et al., 2010). With the information described in the articles, it is difficult to be able to reproduce these interventions.

Also, in a patient-centered care approach, it is essential to integrate patients in all spheres of care. But it seems that these programs were based on clinical experience and literature; none of the identified interventions specified the inclusion of patients in their design.

Fifth, reviewing the outcomes measured, it is important to highlight that although all studies talked about educational intervention, none of them measured the improvement of knowledge. Seemingly, all of the studies wanted to demonstrate the impact of educational intervention on HRQoL, yet not one of them was able to demonstrate improvement as occurs in most studies related to educational programs in IBD (Barlow et al., 2010). Outcomes related to skills and attitude improvements were also not found.

Recommendations

This review suggests that the education of newly diagnosed patients is still unfortunately not a priority for research today. This contrasts with the increasing incidence of IBD worldwide associated with substantial morbidity, mortality, and costs to healthcare systems; and in addition to the fact that education tops the list of priority research topics for IBD nurses (Dibley et al., 2017; Kaplan, 2015).

After these considerations, it is imperative to rethink strategies for educating newly diagnosed patients to increase their health and well-being. The advanced IBD nurse, as part of multidisciplinary team, must step in to play a key role in being perceptive to the patient's educational needs and therefore provide essential information and more individualized education (Kemp et al., 2018).

Adapted and personalized educational resources may improve patient compliance and outcomes. Peer support can also be facilitated, which, in turn, is highly appreciated by patients. Finally, healthcare professionals must become aware that knowledge needs are often highly individual and can change over time. Best practices need to be found in order to communicate personalized information to specific patients in a practical and effective way. Significant benefits have been observed in education using digital health apps; this must be studied specifically with newly diagnosed patients (Yin et al., 2019).

Limitations

One of the methodological strengths of this scoping review is the comprehensive literature search. Some methodological limitations can be described: not one study reported a power calculation to determine the number of participants required, or all had a control group with "normal" care but none provided a description of what "normal" care entailed.

One of the key factors to highlight in the process of article selection was the concept of "newly diagnosed patients" defined as being less than 2 years from diagnosis. Because many studies failed to provide basic demographic information, and only one study was focused on our target population, we only chose as the eligible sample those patients whom were 0-12 months from the time of diagnosis. This increases the risk of overlooking potentially relevant studies for inclusion. Another limitation was the inclusion of different aims for educational intervention, as the measurements were quite different, in turn making it difficult to make comparisons among them.

Practice Implications

In today's rapidly changing healthcare system, which is increasingly people-centered, working to find the best practices to perform health education to newly diagnosed patients from chronic diseases can make an important contribution to improving quality health services as well as in reducing costs.

In daily IBD nursing practice, there are many educational programs, but it is necessary to publish these experiences with scientific methodology that can generate evidence about educational interventions carried out by nurses. Thus, health policy reform should promote the role of nurses in multidisciplinary teams as a priority axis in the care of patients with chronic diseases and increase funds to facilitate research by nurses. Health professionals must be aware that knowledge needs are often very individual, and we need to work from a gender and social context perspective if we want to work toward more efficient and equitable healthcare.

Conclusions

The literature reviewed has shown a knowledge gap in how to approach education in patients recently diagnosed with IBD. Based on this review, it is difficult to draw firm conclusions about the type of interventions that are most effective in newly diagnosed IBD patients. Interventions did not consider patient needs and findings suggest that they centered more on the professional than on the patient. This work can be viewed as the first step in developing robust guidance for developing a strategy for conducting an efficient educational program.

The challenge now is to find the best way to provide appropriate, timely, and patient-centered perspective education, and at the same time, facilitate peer support. The advanced practice nurse's role in education could be critical for addressing IBD patient needs; therefore, more research is needed.

ACKNOWLEDGMENTS

This article is part of a doctoral degree program. The authors are grateful to Matthew Cavazos for providing language help.

REFERENCES