Adaptation and Validation of a Questionnaire to Measure Satisfaction With Telephone Care Among Individuals Living With Inflammatory Bowel Disease.

Background: Individuals with inflammatory bowel disease (IBD) require routine medical follow-up. The usage of telephone care (TC) appointments increased because of the coronavirus disease 2019 (COVID-19) pandemic. We aimed to adapt a questionnaire to evaluate satisfaction with TC use and validate it among IBD individuals. Methods: A committee of experts adapted the Telehealth Usability Questionnaire to the TC context and validated its use in individuals with IBD. This committee included three IBD gastroenterology care providers (GCPs), two IBD-patient partners, and two healthcare researchers. The committee evaluated the content validity of the adapted items to measure TC satisfaction. A pilot study assessed the readability and usability of the questionnaire. Individuals with IBD in Saskatchewan completed an online survey with the adapted questionnaire between December 2021 and April 2022. Data were analyzed using descriptive and correlational techniques. Psychometric analyses were conducted to examine the reliability and validity of the questionnaire. Results: The committee of experts developed the Telephone Care Satisfaction Questionnaire (TCSQ patient), with 16 items and one overall item for TC satisfaction. After the pilot, 87 IBD individuals participated in the online survey. A strong correlation was observed between the 16-item standardized level of TC satisfaction and the overall item, r = 0.85 (95%CI 0.78-0.90, p < 0.001). The TCSQ patient had optimal internal reliability (α = 0.96). Two dimensions were identified in the exploratory factor analysis (i.e., TC usefulness and convenience). Conclusion: The TCSQ patient is a valid and reliable measure of TC satisfaction among individuals with IBD. This questionnaire demonstrated excellent psychometric properties and we recommend its use.

Mapping the Caregiver Experience in a Canadian Province: Research Methodology for the Saskatchewan Caregiver Experience Study.

BACKGROUND: Policies and services for older adults are increasingly focused on living in the community, rather than relying on institutions. A total of 70-80% of community care for older adults is provided by family and friend caregivers. With Canada's aging population, the number of caregivers to older adults is growing. PURPOSE: The purpose of this paper is to describe the research methodology that was employed in the Saskatchewan Caregiver Experience Study. The methodology was used to map the experiences and gather perspectives of caregivers in Saskatchewan and to identify their priority support needs. METHODS: Qualitative description was the approach in this study. An online qualitative survey was administered via SurveyMonkey and distributed via Facebook and community newsletters. The survey collected caregiver demographics and asked three open-ended questions regarding: (1) the challenges that caregivers experience; (2) the positive aspects of caregiving; and (3) the support needs and priorities of Saskatchewan caregivers. A fourth question where caregivers could freely express any other experiences or perspectives was included. Content analysis was the method used for data analysis. RESULTS: 355 individuals met the inclusion criteria for this study. Participants were evenly distributed amongst urban-large, urban-small/medium, and rural settings in Saskatchewan. The average age of caregivers and care recipients were 61 and 83 respectively. CONCLUSION: This study has implications for research, practice, and policy. By gathering the full spectrum of the caregiver experience in Saskatchewan, this study can help to inform how communities, governments, and our healthcare system can best support caregivers in their role.

Exploring the Experiences of Virtual Inflammatory Bowel Disease Care in Saskatchewan.

BACKGROUND: Individuals with inflammatory bowel disease (IBD) require life-long interactions with the healthcare system. Virtual care (VC) technologies are becoming increasingly utilized for accessing healthcare services. Research related to the use of VC technology for the management of IBD in Canada is limited. This study aimed to examine the VC experiences from the perspectives of individuals with IBD and gastroenterology care providers (GCPs). METHODS: A patient-oriented, qualitative descriptive approach was used. Semi-structured interviews were completed with individuals with IBD and GCPs. Data were analyzed using an inductive content analysis approach. RESULTS: A total of 25 individuals with IBD and five GCPs were interviewed. Three categories were identified: benefits of virtual IBD care delivery, challenges of virtual IBD care delivery, and optimizing IBD care delivery. Individuals with IBD and GCPs were satisfied with the use of VC technology for appointments. Participants believed VC was convenient and allowed enhanced access to care. However, VC was not considered ideal in some instances, such as during disease flares or first appointments. Thus, a blended use of virtual and in-person appointments was suggested for individualized care. CONCLUSIONS: The virtual method of connecting patients and providers is deemed useful for routine appointments and for persons living in rural areas. VC is becoming more common in the IBD care environment. Nurses are in a key position to facilitate and enhance virtual IBD care delivery for the benefit of both individuals living with IBD and providers.

Older Adults With Inflammatory Bowel Disease in Canada: A Mixed-Methods Exploratory Study of Care Experiences and Health-Related Quality of Life.

Literature exploring the health-related quality of life and care experiences of older adults with inflammatory bowel disease is limited despite the increasing prevalence in this population. The purpose of this study was to explore the perceived health-related quality of life and care experiences in older adults with inflammatory bowel disease in Canada. This study used a mixed-methods convergent design consisting of a descriptive, cross-sectional survey and qualitative descriptive interviews. Fifty-eight participants completed the survey and 24 participants completed interviews. Older adults reported satisfaction with inflammatory bowel disease-related care, high levels of disease control, moderate health-related quality of life, and low levels of patient-healthcare team interactions. Themes identified were (1) Experiences of inflammatory bowel disease in daily life; (2) Accessibility of inflammatory bowel disease-related health services; and (3) Communication and relationships to facilitate inflammatory bowel disease care. Ultimately, quality inflammatory bowel disease care for older adults is contingent upon communication between patients and providers, access to multidisciplinary clinics, and support networks. By ensuring these factors are present, providers and patients can work together collectively toward positive patient outcomes, enhanced satisfaction with care, and greater perceived quality of care.

Organizational Supports for Nurse Managers in a North American Context: A Scoping Review.

Organizational support for nurse managers (NMs) is not a new phenomenon. However, generally speaking, NMs are not well supported in their roles. This lack of support is burdensome to NMs' role functioning and has impacts on NM recruitment and retention; NM job satisfaction; and outcomes for front-line nurses and patients. There is a gap in the nursing literature as to what supports are currently in place to effectively support NMs. A scoping review (n = 24) focusing on North American healthcare organizations was conducted to examine what organizational supports are currently in place to support NMs and highlight gaps. Arksey and O'Malley's (2005) scoping review framework was used for this review. NM supports are currently lacking; however, they do include orientation to the NM role; competency and professional development; ancillary and clinical support; and support from upper management. The implications for nursing leadership related to organizational supports and gaps in supports for NMs are presented. Healthcare organizations have work to do in order to better support NMs and ensure quality work environments that facilitate the successful functioning of NMs at all stages of their career.

Time for a Gut Check: A Qualitative Study of Proposed Interventions to Address Gender Inequality in Gastroenterology.

Background: Gender inequalities persist in medicine, particularly in some speciality fields where fewer women are employed. Although previous research has suggested potential interventions to broadly address gender inequality in medicine, no research has focused on interventions in the field of gastroenterology. The purpose of this research was to engage women in the field of gastroenterology in Canada, to identify interventions with potential to be effective in addressing gender inequality. Methods: A World Café was hosted in 2019 to discuss gender inequality and interventions in gastroenterology. Twelve women employed in the field of gastroenterology (i.e. physicians, nurses, research staff, and trainees) were purposively recruited and participated in the event. The discussion rounds were audio-recorded, transcribed, and thematic analyses was conducted using Braun and Clarke's principles. Results: Three key themes identifying potential interventions to address gender inequality in gastroenterology were generated: (1) Education; (2) Addressing institutional structures and polices; and 3) Role modelling and mentorship. Participants indicated that interventions should target various stakeholders, including both women and men in gastroenterology, young girls, patients, and administrators. Conclusion: Many of the interventions identified by participants correspond with existing research on interventions in general medicine, suggesting that institutional changes can be made for maximum effectiveness. Some novel interventions were also identified, including publicizing instances of gender parity and supporting interventions across the educational and professional lifecourse. Moving forward, institutions must assess their readiness for change and evaluate existing policies, programs, and practices for areas of improvement.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Epidemiology of IBD.

Inflammatory bowel disease (IBD), consisting of Crohn's disease and ulcerative colitis, is recognized across the world, though Canada has among the highest burdens of IBD in the world. The Canadian Gastro-Intestinal Epidemiology Consortium (CanGIEC) led a six-province study that demonstrated the compounding prevalence of IBD in Canada from 400 per 100,000 in 2002 to 636 per 100,000 in 2014. The prevalence in 2023 is estimated at 825 per 100,000, meaning that over 320,000 people in Canada are living with IBD. Prevalence is forecasted to rise by 2.44% per year such that 1.1% of the population, 470,000 Canadians, will live with IBD by 2035. The overall incidence of IBD in 2023 is 30 per 100,000 person-years, indicating that over 11,000 Canadians will be newly diagnosed with IBD in 2023. Incidence is forecasted to rise by 0.58% per year up to 32.1 per 100,000 by 2035. The rising incidence of IBD is propelled by pediatric-onset IBD, which is rising by 1.23% per year from 15.6 per 100,000 in 2023 to 18.0 per 100,000 in 2035. In contrast, incidence rates among adults and seniors are relatively stable. Understanding the determinates of IBD has expanded through prospective cohort studies such as the Crohn's and Colitis Canada Genetic, Environmental, Microbial (CCC-GEM) project. Consensus recommendations towards diet, lifestyle, behavioural and environmental modifications have been proposed by international organizations with the goal of optimizing disease control and ultimately preventing the development of IBD. Despite these efforts, Canadian healthcare systems will need to prepare for the rising number of people living with IBD.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Direct Health System and Medication Costs.

Healthcare utilization among people living with inflammatory bowel disease (IBD) in Canada has shifted from inpatient management to outpatient management; fewer people with IBD are admitted to hospitals or undergo surgery, but outpatient visits have become more frequent. Although the frequency of emergency department (ED) visits among adults and seniors with IBD decreased, the frequency of ED visits among children with IBD increased. Additionally, there is variation in the utilization of IBD health services within and between provinces and across ethnocultural and sociodemographic groups. For example, First Nations individuals with IBD are more likely to be hospitalized than the general IBD population. South Asian children with Crohn's disease are hospitalized more often than their Caucasian peers at diagnosis, but not during follow-up. Immigrants to Canada who develop IBD have higher health services utilization, but a lower risk of surgery compared to individuals born in Canada. The total direct healthcare costs of IBD, including the cost of hospitalizations, ED visits, outpatient visits, endoscopy, cross-sectional imaging, and medications are rising rapidly. The direct health system and medication costs of IBD in Canada are estimated to be $3.33 billion in 2023, potentially ranging from $2.19 billion to $4.47 billion. This is an increase from an estimated $1.28 billion in 2018, likely due to sharp increases in the use of biologic therapy over the past two decades. In 2017, 50% of total direct healthcare costs can be attributed to biologic therapies; the proportion of total direct healthcare costs attributed to biologic therapies today is likely even greater.

The 2023 Impact of Inflammatory Bowel Disease in Canada: COVID-19 and IBD.

The COVID-19 pandemic had a monumental impact on the inflammatory bowel disease (IBD) community. At the beginning of the pandemic, knowledge on the effect of SARS-CoV-2 on IBD was lacking, especially in those with medication-suppressed immune systems. Throughout the pandemic, scientific literature exponentially expanded, resulting in clinical guidance and vaccine recommendations for individuals with IBD. Crohn's and Colitis Canada established the COVID-19 and IBD Taskforce to process and communicate rapidly transforming knowledge into guidance for individuals with IBD and their caregivers, healthcare providers, and policy makers. Recommendations at the onset of the pandemic were based on conjecture from experience of prior viruses, with a precautionary principle in mind. We now know that the risk of acquiring COVID-19 in those with IBD is the same as the general population. As with healthy populations, advanced age and comorbidities increase the risk for severe COVID-19. Individuals with IBD who are actively flaring and/or who require high doses of prednisone are susceptible to severe COVID-19 outcomes. Consequently, sustaining maintenance therapies (e.g., biologics) is recommended. A three-dose mRNA COVID-19 vaccine regimen in those with IBD produces a robust antibody response with a similar adverse event profile as the general population. Breakthrough infections following vaccine have been observed, particularly as the virus continues to evolve, which supports receiving a bivalent vaccine booster. Limited data exist on the impact of IBD and its therapies on long-term outcomes following COVID-19. Ongoing research is necessary to address new concerns manifesting in those with IBD throughout the evolving pandemic.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Indirect (Individual and Societal) and Direct Out-of-Pocket Costs.

People living with inflammatory bowel disease (IBD) and their caregivers are faced with indirect and out-of-pocket costs that they would not otherwise experience. These costs impact one's ability to contribute to the economy to their fullest potential. The indirect costs of IBD in Canada are estimated to be at least $1.51 billion in 2023 and include costs associated with lost productivity resulting from a combination of missed work (absenteeism), decreased workplace productivity (presenteeism), unemployment, premature mortality, and caregiving costs. Unemployment is the largest contributor to indirect costs ($1.14 billion), followed by costs of absenteeism and presenteeism ($285 million). Caregiving costs for children with IBD are estimated to be nearly $58 million. Canadians with IBD also pay $536 million every year for care that is not covered by universal or supplemental private health insurance; this includes allied healthcare (e.g., care provided by psychologists), medication, and other supportive therapy. Combined, the indirect and out-of-pocket costs of IBD in Canada are estimated at more than $2 billion CAD in 2023. This is substantially higher than the estimate of $1.29 billion in Crohn's and Colitis Canada's 2018 Impact of IBD report with differences attributable to a combination of rising prevalence, inflation, and the addition of presenteeism and caregiving costs to the total indirect costs.

The 2023 Impact of Inflammatory Bowel Disease in Canada: The Influence of Sex and Gender on Canadians Living With Inflammatory Bowel Disease.

Sex (the physical and physiologic effects resulting from having specific combinations of sex chromosomes) and gender (sex-associated behaviours, expectations, identities, and roles) significantly affect the course of inflammatory bowel disease (IBD) and the experience of living with IBD. Sex-influenced physiologic states, like puberty, the menstrual cycle, pregnancy, and andropause/menopause may also impact and be impacted by IBD. While neither Crohn's disease nor ulcerative colitis is commonly considered sex-determined illnesses, the relative incidence of Crohn's disease and ulcerative colitis between males and females varies over the life cycle. In terms of gender, women tend to use healthcare resources at slightly higher rates than men and are more likely to have fragmented care. Women are more commonly prescribed opioid medications and are less likely than men to undergo colectomy. Women tend to report lower quality of life and have higher indirect costs due to higher rates of disability. Women are also more likely to take on caregiver roles for children with IBD. Women with IBD are more commonly burdened with adverse mental health concerns and having poor mental health has a more profound impact on women than men. Pregnant people with active IBD have higher rates of adverse outcomes in pregnancy, made worse in regions with poor access to IBD specialist care. The majority of individuals with IBD in Canada do not have access to a pregnancy-in-IBD specialist; access to this type of care has been shown to allay fears and increase knowledge among pregnant people with IBD.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Executive Summary.

The burden of inflammatory bowel disease (IBD) (i.e., associated direct and indirect costs, prevalence of disease, personal impact to the individual and to caregivers) continues to increase in Canada. The prevalence of IBD has increased since Crohn's and Colitis Canada's 2018 Impact of IBD report from an estimated 270,000 Canadians living with IBD in 2018 to an estimated 322,600 Canadians living with IBD today in 2023. Consequently, associated costs of IBD have also dramatically increased from an estimated $2.57 billion in 2018 to an estimated $5.38 billion in 2023; this increase is due to multiple factors including increased prevalence of disease, inflation, and additional identified factors (e.g., presenteeism, costs of childcare). Beyond the economic impact of IBD, these diseases have a significant impact on people living with the disease and their caregivers, including different presentations of disease, different commonly associated extra-intestinal manifestations or comorbid conditions, and different barriers to accessing care. In this supplementary issue, we review: Evolving trends in the epidemiology of IBD; updated estimates of indirect and direct costs (including out-of-pocket costs) associated with IBD; information specific to IBD in children, adolescents, and seniors; issues related to IBD pertaining to sex and gender; information specific to risks associated with COVID-19 and cancer related to IBD; an overview of current treatments for IBD; and evolving care models, including access to care.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Access to and Models of Care.

Rising compounding prevalence of inflammatory bowel disease (IBD) (Kaplan GG, Windsor JW. The four epidemiological stages in the global evolution of inflammatory bowel disease. Nat Rev Gastroenterol Hepatol. 2021;18:56-66.) and pandemic-exacerbated health system resource limitations have resulted in significant variability in access to high-quality, evidence-based, person-centered specialty care for Canadians living with IBD. Individuals with IBD have identified long wait times, gaps in biopsychosocial care, treatment and travel expenses, and geographic and provider variation in IBD specialty care and knowledge as some of the key barriers to access. Care delivered within integrated models of care (IMC) has shown promise related to impact on disease-related outcomes and quality of life. However, access to these models is limited within the Canadian healthcare systems and much remains to be learned about the most appropriate IMC team composition and roles. Although eHealth technologies have been leveraged to overcome some access challenges since COVID-19, more research is needed to understand how best to integrate eHealth modalities (i.e., video or telephone visits) into routine IBD care. Many individuals with IBD are satisfied with these eHealth modalities. However, not all disease assessment and monitoring can be achieved through virtual modalities. The need for access to person-centered, objective disease monitoring strategies, inclusive of point of care intestinal ultrasound, is more pressing than ever given pandemic-exacerbated restrictions in access to endoscopy and cross-sectional imaging. Supporting learning healthcare systems for IBD and research relating to the strategic use of innovative and integrative implementation strategies for evidence-based IBD care interventions are greatly needed. Data derived from this research will be essential to appropriately allocating scarce resources aimed at improving person-centred access to cost-effective IBD care.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Special Populations-Children and Adolescents with IBD.

Rates of inflammatory bowel disease (IBD) in Canadian children and adolescents are among the highest in the world, and the incidence is rising most rapidly in children under five years of age. These young children may have either a typical form of IBD with multi-factorial aetiology, or they may have a monogenic form. Despite the growing number of children in Canada living with this important chronic disease, there are few available medical therapies approved by Health Canada due to the omission of children from most clinical trials of newly developed biologics. As a result, off-label use of medications is common, and physicians have learned to use existing therapies more effectively. In addition, most Canadian children are treated in multidisciplinary, specialty clinics by physicians with extra training or experience in IBD, as well as specialist nurses, dietitians, mental health care providers and other allied health professionals. This specialized clinic approach has facilitated cutting edge research, led by Canadian clinicians and scientists, to understand the causes of IBD, the optimal use of therapies, and the best ways to treat children from a biopsychosocial perspective. Canadians are engaged in work to understand the monogenic causes of IBD; the interaction between genes, the environment, and the microbiome; and how to address the mental health concerns and medical needs of adolescents and young adults transitioning from paediatric to adult care.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Mental Health and Inflammatory Bowel Disease.

Psychiatric disorders are 1.5 to 2 times more prevalent in persons with inflammatory bowel disease (IBD) than in the general population, with pooled prevalence estimates of 21% for clinical anxiety and 15% for depression. Rates are even higher when considering mental health symptoms, as nearly one-third of persons with IBD experience elevated anxiety symptoms and one-quarter experience depression symptoms. Rates of these symptoms were much higher during periods of disease activity, more common in women than men, and more common in Crohn's disease than ulcerative colitis. There is robust evidence of the detrimental effects of comorbid depression and anxiety on the subsequent course of IBD based on longitudinal studies tracking outcomes over time. However, psychiatric disorders and IBD have bidirectional effects, with each affecting risk of the other. Elevated mental health concerns have been consistently associated with greater healthcare utilization and costs related to IBD. There is some signal that low resilience in adolescence could be a risk factor for developing IBD and that enhancing resilience may improve mental health and intestinal disease outcomes in IBD. Psychological therapies used to treat anxiety and depression occurring in the context of IBD have been shown to significantly improve the quality of life for persons with IBD and reduce anxiety and depression. There is less evidence in regard to the impact of psychotropic medications on mental health or disease outcomes in persons with IBD. There is consensus, however, that mental health must be addressed as part of comprehensive IBD care for children and adults.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Cancer and IBD.

Cancer is a major cause of morbidity and mortality among people with inflammatory bowel disease (IBD). Intestinal cancers may arise as a complication of IBD itself, while extra-intestinal cancers may arise due to some of the immunosuppressive therapies used to treat IBD. Colorectal cancer (CRC) and small bowel cancer risks remain elevated among persons with IBD as compared to age-and sex-matched members of the general population, and the lifetime risk of these cancers is strongly correlated to cumulative intestinal inflammatory burden. However, the cumulative risk of cancer, even among those with IBD is still low. Some studies suggest that IBD-CRC incidence has declined over the years, possibly owing to improved treatment standards and improved detection and management of early neoplastic lesions. Across studies of extra-intestinal cancers, there are generally higher incidences of melanoma, hepatobiliary cancer, and lung cancer and no higher incidences of breast cancer or prostate cancer, with equivocal risk of cervical cancer, among persons with IBD. While the relative risks of some extra-intestinal cancers are increased with treatment, the absolute risks of these cancers remain low and the decision to forego treatment in light of these risks should be carefully weighed against the increased risks of intestinal cancers and other disease-related complications with undertreated inflammatory disease. Quality improvement efforts should focus on optimized surveillance of cancers for which surveillance strategies exist (colorectal cancer, hepatobiliary cancer, cervical cancers, and skin cancers) and the development of cost-effective surveillance strategies for less common cancers associated with IBD.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Treatment Landscape.

The therapeutic landscape for inflammatory bowel disease (IBD) has changed considerably over the past two decades, owing to the development and widespread penetration of targeted therapies, including biologics and small molecules. While some conventional treatments continue to have an important role in the management of IBD, treatment of IBD is increasingly moving towards targeted therapies given their greater efficacy and safety in comparison to conventional agents. Early introduction of these therapies-particularly in persons with Crohn's disease-combining targeted therapies with traditional anti-metabolite immunomodulators and targeting objective markers of disease activity (in addition to symptoms), have been shown to improve health outcomes and will be increasingly adopted over time. The substantially increased costs associated with targeted therapies has led to a ballooning of healthcare expenditure to treat IBD over the past 15 years. The introduction of less expensive biosimilar anti-tumour necrosis factor therapies may bend this cost curve downwards, potentially allowing for more widespread access to these medications. Newer therapies targeting different inflammatory pathways and complementary and alternative therapies (including novel diets) will continue to shape the IBD treatment landscape. More precise use of a growing number of targeted therapies in the right individuals at the right time will help minimize the development of expensive and disabling complications, which has the potential to further reduce costs and improve outcomes.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Special Populations-IBD in Seniors.

Approximately one out of every 88 seniors has inflammatory bowel disease (IBD), and this is expected to increase in the future. They are more likely to have left-sided disease in ulcerative colitis, and isolated colonic disease in Crohn's disease; perianal disease is less common. Other common diagnoses in the elderly must also be considered when they initially present to a healthcare provider. Treatment of the elderly is similar to younger persons with IBD, though considerations of the increased risk of infections and malignancy must be considered when using immune modulating drugs. Whether anti-TNF therapies increase the risk of infections is not definitive, though newer biologics, including vedolizumab and ustekinumab, are thought to be safer with lower risk of adverse events. Polypharmacy and frailty are other considerations in the elderly when choosing a treatment, as frailty is associated with worse outcomes. Costs for IBD-related hospitalizations are higher in the elderly compared with younger persons. When elderly persons with IBD are cared for by a gastroenterologist, their outcomes tend to be better. However, as elderly persons with IBD continue to age, they may not have access to the same care as younger people with IBD due to deficiencies in their ability to use or access technology.

An Exploratory Study of Health-related Quality of Life and Care Experiences in Older Adults with Inflammatory Bowel Disease.

Canada has one of the highest rates of inflammatory bowel disease (IBD), with older adults as the fastest-growing group of individuals affected. This exploratory mixed methods study aimed to understand perceived health-related quality of life and care experiences in older adults with IBD. Participants greater than 60 years of age, who were diagnosed with IBD, and who lived in Saskatchewan, Canada were invited to participate in both an online survey and telephone interview. Seventy-three respondents completed the survey, and 18 participants were interviewed. Most individuals were diagnosed before age 60, believed their IBD was well controlled, believed their current treatment was useful, and were satisfied with their care. Individuals also reported a moderate health-related quality of life. However, collaborative management of IBD care between providers and older adults with IBD was identified as an area with room for improvement. Strategies to enhance disease self-management and engaged chronic illness care are critical.

The Experiences of Older Adults Living With Inflammatory Bowel Disease: A Scoping Review.

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.