Exploring endoscopy sedation experiences in young adults with pediatric-onset inflammatory bowel disease after transfer to adult gastroenterology care

Abstract

Background

Sedation practices differ between pediatric and adult endoscopy units and may shape how patients with inflammatory bowel disease (IBD) experience procedures after transfer to adult care.

Objectives

To evaluate endoscopy-related experiences in pediatric and adult settings among young adults with pediatric-onset IBD following transfer to adult gastroenterology care.

Methods

We conducted a single-centre, cross-sectional survey at an academic institution (June 2024 to February 2025) among young adults (18-25 years) with pediatric-onset IBD who underwent endoscopy in both pediatric and adult settings. Participants reported on procedure-related satisfaction, pain, discomfort, anxiety, and preparedness. Regression analyses identified predictors of these outcomes, and free-text responses were analyzed using qualitative content analysis.

Results

Among 97 participants (72% female; median diagnosis age 14 years), deep sedation was more common in pediatric (95%) than adult endoscopy (57%). Paired Wilcoxon signed-rank tests showed adult endoscopy was associated with lower satisfaction with sedation (P = .0001), greater pain (P = .0007), and discomfort (P = .0002). There were no significant differences in anxiety (P = .47) or satisfaction with preparedness for adult care (P = .47). Older age at diagnosis was associated with lower odds of reporting pain (aOR 0.19, 95% CI 0.05-0.70) and anxiety (aOR 0.20, 95% CI 0.05-0.72) during adult endoscopy. Qualitative themes highlighted limited communication and perceived lack of empathy as barriers, while education and provider compassion facilitated positive experiences.

Conclusions

Endoscopy experiences differ between pediatric and adult care. Improving communication, patient education, and shared decision-making around sedation may improve endoscopy experiences in adult settings.

Introduction

The global prevalence of inflammatory bowel disease (IBD) continues to rise, with Canada reporting amongst the highest incidence rates worldwide. This increase is particularly pronounced in pediatric-onset IBD, with a projected incidence of 18.5 per 100 000 by 2035.¹ More than 25% of patients are diagnosed before the age of 18, creating a substantial population requiring lifelong surveillance and therapy.² Endoscopic procedures play a central role in diagnosis, disease monitoring, and therapeutic decision-making.

As adolescents and young adults (AYAs) transition from pediatric to adult health care models, they face unique challenges during a formative period in chronic disease management marked by increasing independence, evolving health literacy, and psychosocial challenges. Differences between pediatric and adult healthcare delivery, including the degree of parental involvement, clinic structures, and expectations of self-management, can complicate this process.³ Studies have shown that this transition is often associated with increased healthcare utilization rates, reduced adherence, gaps in care, and consequently worse outcomes.^4,5 A recent qualitative study exploring perceptions of transition among patients, parents, and providers found that patients identified navigating the adult care system as a barrier.⁶ Despite recognition of the importance of transition readiness, many AYAs remain underprepared, highlighting the need for multidisciplinary support, identification of areas of need, and implementation of targeted interventions.⁷

Endoscopy is one domain where differences between pediatric and adult care are especially pronounced. In pediatrics, procedures are commonly performed under propofol-based deep sedation or general anesthesia, which minimizes patient awareness but requires anesthesiology support, specialized monitoring, and recovery resources—all factors that increase both procedural time and cost. In contrast, adult centers have variable sedation practices and some centers use conscious sedation with fentanyl and midazolam as their standard practice.⁷ While conscious sedation is safe, widely available, cost-effective, and allows for rapid recovery, patients remain more aware during procedures. For AYAs encountering adult endoscopy for the first time, negative experiences may erode trust, reduce willingness to undergo recommended surveillance, and compromise long-term disease management. Despite this, there is limited literature exploring how differences in sedation practices influence patient-reported experiences after the transfer from pediatric to adult IBD care.

Understanding these experiences is important for developing strategies that support patient well-being and optimize adherence to care plans. This study aimed to compare endoscopy-related experiences between pediatric and adult settings among young adults transferred to adult gastroenterology care. We sought to describe sedation practices and patient-reported experiences. By identifying predictors of positive and negative experiences, our goal is to inform procedural care practices for this population.

Methods

Study design

We conducted a single-centre, cross-sectional survey at an academic institution between June 2024 and February 2025 of young adults with pediatric-onset IBD who had transferred from pediatric to adult gastroenterology care. A mixed-methods design was used, combining quantitative survey data with qualitative free-text responses. Eligible participants were 18-25 years of age, had a confirmed diagnosis of pediatric-onset IBD (ie, age of diagnosis less than 18), and had undergone at least one endoscopic procedure in both pediatric and adult healthcare settings. Individuals unable to consent or without endoscopies in both settings were excluded. Ethics approval was obtained from the Mount Sinai Research Ethics Board (REB #24-0016-E).

Study recruitment

Participants were recruited at the Mount Sinai Hospital Centre for Inflammatory Bowel Disease (Toronto, Ontario), which serves over 4700 patients with IBD with approximately 10 000 annual visits.⁸ Eligible patients were identified through clinic rosters and research cohorts. Based on patient volumes, we anticipated recruiting approximately 100 participants, or until thematic saturation was achieved for qualitative analysis. Recruitment occurred in-person after clinic visits, during which a study team member introduced the study and provided an information sheet containing a QR code to the anonymous survey hosted on Simple Survey. Patients who had previously consented to be contacted for research were approached by email and received a secure survey link. Participation was voluntary and did not impact clinical care. An electronic consent statement preceded survey questions, and survey completion was considered implied consent. All data were de-identified and stored on secure, password-protected institutional servers. Of 384 patients approached, 104 completed the survey, with a response rate of 27%.

Survey instrument

The anonymous survey was developed by the research team to assess endoscopy experiences in pediatric and adult care settings. The survey included 33 items covering participant demographics, IBD characteristics, number of endoscopic procedures, sedation type used in pediatric and adult care, and patient-reported experiences including pain, discomfort, anxiety, and satisfaction with preparedness. Responses included categorical choices and Likert scales, with optional free-text responses to explore self-reported barriers and facilitators to positive endoscopy experiences. The survey was not based on a previously validated instrument but was reviewed by two gastroenterologists with experience in IBD care. Sedation was defined for participants based on the American Society of Anesthesiologists definitions, with a reference provided in the survey instrument.⁹ Specifically, deep sedation was defined as a “drug-induced depression of consciousness during which patients cannot be easily aroused but respond purposefully following repeated or painful stimulation”.⁹ Moderate or conscious sedation was defined as a “drug-induced depression of consciousness during which patients respond purposefully to verbal commands”.⁹ Pain, discomfort, and anxiety were assessed as patient-reported experiences during endoscopy and were not further defined within the survey, allowing participants to report these experiences based on their own interpretation. Satisfaction with preparation by pediatric and adult providers referred specifically to preparation for the endoscopy experience and sedation expectations, rather than to the broader transition process.

Statistical analysis

Analysis was performed with the support of a biostatistician. Continuous variables were summarized as median (interquartile range [IQR]) and categorical variables as frequencies (%). Paired comparisons of patient-reported experiences of pain, discomfort, anxiety, and satisfaction with preparedness in adult care between pediatric and adult settings were performed using the Wilcoxon signed-rank test. P-value < .05 was considered statistically significant. Univariate logistic regression was used to examine factors associated with self-reported adult endoscopy experience outcomes, including pain, discomfort, anxiety, and satisfaction. Univariable models estimated unadjusted odds ratios (ORs), and multivariable models adjusted for potential confounders, including sex, age at diagnosis, IBD subtype, and number of endoscopies. Adjusted odds ratios (aORs) with 95% confidence intervals (CI) were reported. Only participants with complete data were included in analyses. Free-text responses were analyzed using qualitative content analysis.¹⁰ Responses were reviewed by two research team members (ZM, NB) with iterative development of codes that were grouped into broader themes. Recruitment and analysis continued until thematic saturation was reached, defined at the point at which no new major themes were identified in successive responses.^10,11 Codes were organized into broader themes, which were reviewed collaboratively among the larger team.

Results

Demographic characteristics

A total of 104 participants completed the survey, of whom 7 were excluded due to incomplete survey responses, leaving 97 for analysis. The majority were female (72%), with a median age at diagnosis of 14 years (IQR 4, range 5-18). Age of diagnosis was evenly distributed between 10-14 years (44%) and 15-18 years (44%), with a smaller proportion diagnosed before age 10 (11%). Disease subtype included Crohn’s disease in 55%, ulcerative colitis in 42%, and IBD-unspecified in 3%. Participants most commonly identified as White (68%), followed by South Asian (11%), East/Southeast Asian (11%), Middle Eastern (7%), and smaller proportions identified as Black (6%) or Latin (3%). Most participants were receiving active medical therapy (89%), while only 11% reported no active therapy. Participant characteristics are summarized in Table 1.

Table 1.

Baseline demographics and clinical characteristics (n = 97).

Characteristic	Values
Sex, n (%)
Female	70 (72)
Male	27 (28)
Age of respondents in years, median (IQR)	22 (3)
Age at diagnosis in years
Median (IQR)	14 (4)
<10 years, n	11
10-14, n	43
15-18, n	43
IBD subtype, n (%)
Crohn’s disease	53 (55)
Ulcerative colitis	41 (42)
IBD-undifferentiated	3 (3)
Current therapy, n (%)
Anti-tumor necrosis factor	49 (51)
5-aminosalicylates	15 (15)
Immunomodulators	13 (13)
Interleukin-12/23 inhibitors	11 (11)
Corticosteroids	8 (8)
Interleukin-23 inhibitors	4 (4)
Integrin receptor antagonist	4 (4)
JAK inhibitor	3 (3)
No active therapy	11 (11)
Prior IBD-related hospitalizations, n (%)
Yes	78 (80)
No	19 (20)
Prior IBD-related surgery, %
Yes	25 (26)
No	72 (74)
Racial/Ethnic identity, n (%)
White	66 (68)
South Asian	11 (11)
East/Southeast Asian	11 (11)
Middle Eastern	7 (7)
Black	6 (6)
Latin	3 (3)
Prefer not to say	2 (2)
Indigenous	0 (0)
Other	0 (0)

IBD, inflammatory bowel disease; IQR, interquartile range.

Endoscopy experiences in pediatric care

In pediatric care, 28% of participants underwent one endoscopic procedure, 38% underwent 2-4 procedures, and 34% had more than 4 procedures. Deep sedation was used in 95% of pediatric procedures, while 5% reported moderate sedation (Table 2).

Table 2.

Endoscopic procedures in pediatric and adult care (n = 97).

Characteristic	Pediatric	Adult
Number of endoscopies, %
1	28	32
2-4	38	49
>4	34	19
Sedation type, %
Deep sedation	95	57
Moderate “conscious” sedation	5	42
No sedation	0	1

As shown in Table 3, 90% of participants reported being satisfied or very satisfied with pediatric sedation, 2% were neutral, and 7% were very unsatisfied. Pain during pediatric endoscopy was reported as none (65%), mild (23%), moderate (9%), or severe (3%). Discomfort was reported as none (42%), mild (41%), moderate (12%), or severe (4%). Anxiety was reported as none (39%), mild (33%), moderate (19%), or severe (9%). Common contributors to anxiety included fear of the procedure (44%), fear of findings (38%), fear of insufficient sedation (30%), and fear of pain (26%). Most participants (72%) were satisfied or very satisfied with the preparation for adult care provided by their pediatric gastroenterologist, while 20% were neutral and 6% were unsatisfied.

Table 3.

Participant-reported experiences during endoscopy (n = 97).

Characteristics	Pediatric	Adult	P-value
Satisfaction with sedation, %
Very unsatisfied	7	13	.0001
Unsatisfied	0	10
Neither satisfied nor unsatisfied	2	7
Satisfied	44	36
Very satisfied	46	33
Pain, %
No pain	65	51	.0007
Mild pain	23	28
Moderate pain	9	15
Severe pain	3	6
Discomfort, %
No discomfort	42	29	.0002
Mild discomfort	41	40
Moderate discomfort	12	20
Severe discomfort	4	11
Anxiety, %
No anxiety	39	35	.47
Mild anxiety	33	32
Moderate anxiety	19	28
Severe anxiety	9	5
Contributors to anxiety, n
Fear of endoscopic procedure	45	32	-
Fear of pain during endoscopy	26	31
Fear of insufficient sedation	30	39
Fear of the endoscopy findings	38	35
None of the above	38	34
Other
Fear of complications	1	1
Parental fear	1	0
Environmental differences	0	2
Satisfaction with preparedness in adult care (by provider), %	Pediatric GI	Adult GI
Very unsatisfied	2	4	.47
Unsatisfied	6	8
Neither satisfied nor unsatisfied	20	15
Satisfied	36	35
Very satisfied	36	37
Difficulties with transition to adult sedation practices, %
Yes		48	-
No		45
N/A		7
Factors that helped transition to adult sedation practices, %
Yes		35	-
No		56
N/A		9

Endoscopy experiences in adult care

In adult care, 32% of participants underwent one endoscopic procedure, 49% underwent 2-4 procedures, and 19% had more than 4. Sedation practices were more variable: 57% received deep sedation, while 42% received moderate sedation (Table 2).

Satisfaction with adult endoscopy was reported as satisfied or very satisfied by 69% of participants, neutral by 7%, and unsatisfied or very unsatisfied by 23%. Pain during adult procedures was reported as none (51%), mild (28%), moderate (15%), or severe (6%). Discomfort was reported as none (29%), mild (40%), moderate (20%), or severe (11%). Anxiety was reported as none (35%), mild (32%), moderate (28%), or severe (5%). Contributors to anxiety included fear of insufficient sedation (39%), fear of findings (35%), fear of the procedure (32%), and fear of pain (31%). Satisfaction with preparedness provided by adult gastroenterologists was reported as satisfied or very satisfied by 72% of participants, neutral by 15%, and unsatisfied by 12%. Overall, 48% reported difficulties with transition to adult sedation practices, while 35% identified factors that facilitated adaptation (Table 3).

Paired comparisons between pediatric and adult care

Paired comparisons using the Wilcoxon signed-rank test showed that compared with pediatric care, adult endoscopy was associated with significantly lower satisfaction with sedation (P = .0001) and higher reported pain (P = .0007) and discomfort (P = .0002). There were no significant differences in anxiety (P = .47) or satisfaction with preparedness for adult care (P-0.47) between settings (Table 3).

Predictors of outcomes

Regression analyses were performed to examine predictors of satisfaction, pain, discomfort, anxiety, and preparedness in the adult endoscopy setting. Deep sedation during pediatric care was associated with lower satisfaction in adulthood (aOR 0.06, 95% CI 0.01-0.48). In contrast, deep sedation in adult care was associated with higher odds of satisfaction (aOR 10.8, 95% CI 4.0-29.4) compared with moderate sedation (Table 4).

Table 4.

Predictors of satisfaction with adult endoscopy.

	Unadjusted OR (95% CI)	Adjusted OR (95% CI)
Gender: female vs male	2.281 (1.011-5.148)	1.140 (0.419-3.104)
Age of IBD diagnosis:
10-14 vs <10	1.704 (0.517-5.608)	1.911 (0.534-6.839)
15-18 vs <10	2.655 (0.797-8.847)	1.143 (0.289-4.520)
Race: non-White vs White	1.307 (0.600-2.844)	1.329 (0.539-3.277)
IBD diagnosis: CD vs UC	0.769 (0.367-1.613)	0.813 (0.346-1.911)
Number of pediatric endoscopies
2-3 vs 1	0.558 (0.223-1.395)	0.882 (0.300-2.594)
4 vs 1	0.424 (0.165-1.086)	0.364 (0.106-1.249)
Sedation method in pediatric care
Deep vs moderate	0.381 (0.067-2.165)	0.062 (0.008-0.478)
Number of adult endoscopies
2-3 vs 1	0.855 (0.374-1.956)	1.021 (0.388-2.684)
4 vs 1	0.360 (0.124-1.043)	0.355 (0.099-1.266)
Sedation method in adult care
Deep vs moderate	6.827 (2.991-15.581)	10.849 (4.009-29.360)

CD, Crohn’s disease; IBD, inflammatory bowel disease; OR, odds ratio; UC, Ulcerative colitis.

Deep sedation in adult care was associated with lower odds of reporting pain (aOR 0.15, 95% CI 0.06-0.40, Table 5) and discomfort (aOR 0.13, 95% CI 0.05-0.34, Table 6). Older age at diagnosis was associated with lower odds of reporting pain (aOR 0.19, 95% CI 0.05-0.70, Table 5), discomfort (aOR range 0.17-0.18, Table 6), and anxiety (aOR 0.20, 95% CI 0.05-0.72, Table 7). Female sex trended toward higher anxiety but was not statistically significant (Table 7). As shown in Table 8, deep sedation in adult care was associated with greater odds of being satisfied with transition preparation (aOR 7.18, 95% CI 2.78-18.54), while other predictors were not significantly associated with preparedness outcomes. IBD therapies, prior hospitalization, and prior surgery were not included in regression models.

Table 5.

Predictors of pain during adult endoscopy.

	Unadjusted odds ratio (95% CI)	Adjusted odds ratio (95% CI)
Gender: female vs male	1.191 (0.512-2.769)	2.299 (0.771-6.859)
Age of IBD diagnosis
10-14 vs <10	0.284 (0.083-0.965)	0.186 (0.050-0.695)
15-18 vs <10	0.284 (0.083-0.965)	0.250 (0.061-1.017)
Race: non-White vs White	0.740 (0.328-1.673)	0.907 (0.347-2.374)
IBD diagnosis: CD vs UC	1.210 (0.559-2.620)	0.919 (0.373-2.263)
Number of pediatric endoscopies
2-3 vs 1	1.074 (0.421-2.739)	1.101 (0.356-3.405)
4 vs 1	1.061 (0.406-2.771)	1.131 (0.315-4.063)
Sedation method in pediatric care
Deep vs moderate	0.457 (0.089-2.340)	1.157 (0.179-7.468)
Number of adult endoscopies
2-3 vs 1	0.521 (0.222-1.224)	0.428 (0.156-1.179)
4 vs 1	0.869 (0.298-2.538)	0.867 (0.235-3.204)
Sedation method in adult care
Deep vs moderate	0.259 (0.117-0.572)	0.149 (0.056-0.400)

CD, Crohn’s disease; IBD, inflammatory bowel disease; OR, odds ratio; UC, Ulcerative colitis.

Table 6.

Predictors of discomfort during adult endoscopy.

	Unadjusted odds ratio (95% CI)	Adjusted odds ratio (95% CI)
Gender: female vs male	0.729 (0.324-1.639)	2.157 (0.781-5.955)
Age of IBD diagnosis
10-14 vs <10	0.260 (0.076-0.888)	0.175 (0.047-0.646)
15-18 vs <10	0.204 (0.059-0.705)	0.185 (0.045-0.752)
Race: non-White vs White	0.621 (0.283-1.365)	0.755 (0.308-1.853)
IBD diagnosis: CD vs UC	0.901 (0.429-1.896)	0.656 (0.279-1.542)
Number of pediatric endoscopies
2-3 vs 1	1.950 (0.779-4.882)	1.515 (0.521-4.405)
4 vs 1	1.528 (0.599-3.901)	1.179 (0.349-3.986)
Sedation method in pediatric care
Deep vs moderate	0.603 (0.118-3.081)	1.776 (0.277-11.378)
Number of adult endoscopies
2-3 vs 1	0.810 (0.355-1.851)	0.772 (0.296-2.012)
4 vs 1	1.387 (0.482-3.989)	1.607 (0.455-5.679)
Sedation method in adult care
Deep vs moderate	0.197 (0.088-0.441)	0.128 (0.049-0.336)

CD, Crohn’s disease; IBD, inflammatory bowel disease; OR, odds ratio; UC, Ulcerative colitis.

Table 7.

Predictors of anxiety during endoscopy.

	Unadjusted odds ratio (95% CI)	Adjusted odds ratio (95% CI)
Gender: female vs male	1.562 (0.688-3.543)	2.418 (0.861-6.787)
Age of IBD diagnosis
10-14 vs <10	0.304 (0.089-1.043)	0.198 (0.054-0.723)
15-18 vs <10	0.463 (0.137-1.568)	0.392 (0.100-1.544)
Race: non-White vs White	0.464 (0.209-1.032)	0.414 (0.165-1.038)
IBD diagnosis: CD vs UC	0.679 (0.322-1.432)	0.681 (0.290-1.600)
Number of pediatric endoscopies
2-3 vs 1	0.701 (0.283-1.736)	0.704 (0.243-2.044)
4 vs 1	0.985 (0.390-2.484)	1.002 (0.299-3.358)
Sedation method in pediatric care
Deep vs moderate	0.782 (0.152-4.016)	1.640 (0.256-10.492)
Number of adult endoscopies
2-3 vs 1	1.168 (0.513-2.661)	1.462 (0.561-3.808)
4 vs 1	0.759 (0.261-2.208)	1.070 (0.299-3.821)
Sedation method in adult care
Deep vs moderate	0.475 (0.226-1.000)	0.309 (0.124-0.768)

CD, Crohn’s disease; IBD, inflammatory bowel disease; OR, odds ratio; UC, Ulcerative colitis.

Table 8.

Predictors of satisfaction with preparedness.

	Unadjusted odds ratio (95% CI)	Adjusted odds ratio (95% CI)
Gender: female vs male	1.029 (0.458-2.311)	0.464 (0.167-1.289)
Age of IBD diagnosis
10-14 vs <10	1.513 (0.458-5.000)	1.982 (0.567-6.931)
15-18 vs <10	2.252 (0.675-7.516)	1.435 (0.370-5.567)
Race: non-White vs White	1.443 (0.658-3.168)	1.205 (0.493-2.943)
IBD diagnosis: Crohn’s vs UC	0.877 (0.417-1.845)	1.023 (0.438-2.387)
Number of pediatric endoscopies
2-3 vs 1	0.502 (0.198-1.271)	0.543 (0.184-1.603)
4 vs 1	0.386 (0.149-1.003)	0.369 (0.108-1.265)
Sedation method in pediatric care
Deep vs moderate	0.918 (0.177-4.767)	0.227 (0.034-1.500)
Number of adult endoscopies
2-3 vs 1	1.165 (0.509-2.666)	1.266 (0.486-3.298)
4 vs 1	0.606 (0.211-1.740)	0.580 (0.167-2.018)
Sedation method in adult care
Deep vs moderate	4.378 (1.998-9.595)	7.177 (2.778-18.539)

CD, Crohn’s disease; IBD, inflammatory bowel disease; OR, odds ratio; UC, Ulcerative colitis.

Qualitative findings

Qualitative responses described both challenges and facilitators in transitioning from pediatric to adult endoscopy practices. Reported challenges included differences in sedation type, inadequate pain control, lack of transparency regarding sedation type, anxiety related to being awake during procedures, perceived lack of empathy from adult providers, systemic differences in the care environment, increased need for self-advocacy, bowel preparation difficulties, and barriers related to the COVID-19 pandemic (Table 9). Reported facilitators included support from medical teams, clear communication and education, continuity of care between pediatric and adult providers, being offered a choice in sedation, and emotional or social support from family and peers (Table 10).

Table 9.

Challenges in transitioning from pediatric to adult endoscopy.

Themes and subthemes (n)	Participant quotes
Sedation differences (29)
Depth of sedation	“Switching from deep sedation in pediatric care to conscious sedation was unsettling.” “The change from deep sedation to moderate sedation was difficult.” “Despite sedation I was fully conscious to the experience which was uncomfortable throughout…I was unable to communicate that discomfort.” “Switching from deep sedation in pediatric care to conscious sedation was a little unsettling”
Inadequate pain control	“I experienced significant pain and needed extra sedative agents.” “Not as much sedation used, expected to tolerate the pain more.”
Lack of transparency	“I was not informed prior to the endoscopy what form of sedation I would be receiving.” “The first scope while conscious was surprising.” “I was not aware until I got into the waiting room with my IV in that I wasn’t going to be fully sedated but moderately sedated and I was frightened my first time in the adult system.” “There was less communication about the new sedation method…felt like I was doing it “cold turkey” and it was very uncomfortable” “I have done this procedure 10 times in total. The most recent time was done under “conscious” sedation. I was not communicated this until I was in the procedure room… this completely blindsided me and caused me to panic because I had only ever experienced this procedure under deep sedation.” “I was told that I would have had to “call ahead” to request for the deep sedation method—which was never made clear prior to the appointment… anesthesia had always been the exclusive default method of sedation in my years of experience as a patient in pediatric and adult care.”
Psychosocial impact (10)
Anxiety and fear	“The idea of being awake caused me anxiety.”“The anxiety of being awake during the procedure.”
Perceived lack of empathy	“There is a significant decrease in compassion and empathy towards patients in adult care… I have been dismissed and ridiculed for requesting full deep sedation for colonoscopy, because they considered it a needless request that only makes it more difficult for hospital staff.” “I have often been treated with apathy and even cruelty.”
Systemic differences (13)
Changes in care environment	“In pediatrics…you had a room and bathroom to yourself. In adult care.. I was in a crammed room with one bathroom.” “It’s still scary and it’s not just a once in a life time thing like most people” “Miss the relationships and the individuality they provided (re: Pediatric setting)” “Paediatric doctors will explain procedures in a very simple way, making the procedure more comforting compared to adult practices”
Need for self-advocacy	“I had to call ahead to request deep sedation, which was never made clear.” “I was never asked about …sedation in peds but needed to advocate for full sedation in adult care which I was not expecting.”
Preparation difficulties (4)
Bowel prep	“The prep is a lot more difficult compared to peds.” “The drinks and laxatives were the hardest part.” “Having to do all the preparation myself without being in a hospital”
Transition barriers (1)
Impact of COVID-19	“Virtual introduction made my transition less informed.”

Table 10.

Facilitators in transitioning from pediatric to adult endoscopy.

Themes & subthemes (n)	Participant quotes
Medical team support (20)
Supportive and professional staff	“Everyone involved was very friendly or professional, which was comforting.” “The anesthesiologists were very kind and explained everything.” “Comforting words regarding the ease of the procedure from my doctor” “My doctor assured me I wouldn’t receive a drug I was allergic to.”
Patient education	“My adult GI explained the process again.” “My doctor and his staff walking me through the process and being available.” “Talking to my adult gastroenterologist when coming out of pediatric care” “My doctor/the team explain the process to me and answer my questions” “Asking questions to my GI” “Nurses/doctors all explained procedures and what was going to happen very thoroughly” “Very clear instructions provided (by) caring medical staff”
Continuity of care (15)
Pre-transition communication	“Conversations with my pediatrics (team) made it comfortable to transition” “[Pediatric hospital] medical team support” “Smooth transfer of information between pediatric and adult doctors.”
Choice in sedation practices	“Letting me choose the sedation method and …telling me what each entails.” “I always asked for sedation as it was optional.” “having my GI listen and respect my request for full sedation” “The fact that I still received deep sedation helped.” “Same sedation used.” “The fact that the sedation process was very similar helped.”
Social support (4)
Support from  family and friends	“Family support.” “Talking to friends and family who also made the transition.”
Personal coping strategies	“Reminding myself that it is for my own health has been a good way to motivate myself to power through”

Discussion

This study offers new insights into the lived experiences of young adults with pediatric-onset IBD who transitioned from pediatric to adult gastroenterology care. Canadian and international transition consensus statements emphasize that effective transition requires attention to medical readiness, self-management, and continuity.⁷ Despite the central role of endoscopy in diagnosis and disease monitoring, comparatively little attention has been given to how differences in procedural practices across care settings influence patient experience and preparedness during this transition.

In our cohort, endoscopy practices differed between pediatric and adult care, consistent with established patterns in the literature.^7,12 Pediatric endoscopy was almost universally performed under deep sedation, whereas adult sedation practices were more variable. These differences were reflected in patient-reported experiences, with adult endoscopy associated with lower satisfaction and greater pain and discomfort compared with pediatric care. This aligns with prior evidence demonstrating that propofol-based sedation is associated with modest but statistically significant improvements in patient satisfaction compared to traditional midazolam-opioid regimens (standardized mean difference [SMD] 0.54, CI 0.30-0.79).¹³

Several factors emerged as important predictors of adult endoscopy experience. Prior exposure to deep sedation in pediatric care was associated with lower satisfaction in adulthood. Patients who routinely undergo endoscopy under deep sedation may perceive subsequent adult procedures less favourably when sedation practices differ, especially if these differences are not explicitly addressed beforehand. Importantly, patient experience is influenced by expectations and understanding of the procedure.¹⁴ When prior experiences establish expectations for deep sedation, transition to different approaches in adult care may result in a mismatch that negatively impacts the perceived experience. Pre-procedural education in colonoscopy literature has been shown to mitigate this by aligning expectations, improving bowel preparation quality, and enhancing overall satisfaction.¹⁵

Furthermore, older age at diagnosis was associated with lower odds of pain, discomfort, and anxiety during adult endoscopy. This identifies younger age at diagnosis as a potential risk factor for less favourable adult procedural experiences. Younger age at diagnosis is associated with a more aggressive disease course and increased vulnerability to psychological morbidity.¹⁶ This association may reflect the cumulative burden of earlier disease onset, including greater complications and repeated exposure to procedures over time, which may contribute to heightened procedural stress.¹⁶ A cohort study demonstrated that patients with more severe or surgically managed IBD had higher rates of anxiety and depression compared with those without surgical disease.¹⁷

Although satisfaction with preparedness provided by pediatric and adult care providers did not differ significantly, nearly half of the participants reported challenges adapting to adult sedation practices and described gaps in preparation. The qualitative findings provide further contextualization. Participants described adult endoscopy as challenging not only due to the physical challenges, but also due to the emotional impact of feeling dismissed, rushed, or inadequately informed: “I have been dismissed and ridiculed for requesting full deep sedation for colonoscopy, because they considered it a needless request that only makes it more difficult for hospital staff”. Participants also highlighted environmental differences between pediatric and adult settings, including reduced privacy and emotional support. One participant noted: “In adult care, I was in a crammed room with one bathroom”. These experiences reflect patterns in broader literature on endoscopy, identifying inadequate communication and limited emotional support as contributors to patient distress.¹⁸ In contrast, positive experiences were characterized by clear explanations, shared decision-making, and provider empathy. As one participant described, “Comforting words regarding the ease of the procedure from my doctor” helped alleviate distress. This is consistent with evidence that transparent communication and patient involvement in care decisions foster greater trust and engagement.^18,19

Collectively, this highlights that transition of care extends beyond medications, follow-up schedules, and self-management skills to include how care is delivered. Endoscopy experiences are an important and potentially modifiable component of the transition to adult care, which may meaningfully shape how young adults perceive their care and providers. Non-adherence to disease surveillance increases following transfer to adult care, particularly among younger patients.²⁰ In this context, negative procedural experiences can erode trust and reduce willingness to engage in future disease monitoring in an already at-risk population.⁴ Transition to adult care can be strengthened by clearly outlining differences in sedation practices and using shared decision-making, where feasible. Preparation should begin in pediatric care and continue into adult practice, with reinforcement at key transition points such as intake and prior to procedures. A coordinated approach between pediatric and adult gastroenterologists may be most effective, particularly as endoscopy-related practices differ between settings and centres.

Several limitations warrant consideration. This study reflects the experiences of participants from a single academic centre and a predominantly White, female sample, which may limit generalizability and does not capture the diversity of approaches across institutions. The cross-sectional design identifies associations but cannot establish causality, and reliance on self-reported data is vulnerable to recall and sampling biases. We also did not address system-level factors such as cost, staffing, or access constraints that influence sedation decisions. Despite these limitations, our findings identify modifiable factors that may improve endoscopy experiences after transfer of care. Future work should evaluate whether structured procedural counselling and patient-centered discussions of sedation expectations improve adult endoscopy experience, engagement, and continuity of care.

Conclusions

Endoscopy-related experiences differ between pediatric and adult care for young adults with pediatric-onset IBD after transfer to gastroenterology care. Clear communication, acknowledgement of prior procedural experiences, and empathetic patient-centered care may enhance patient experience and support ongoing engagement with disease surveillance.

Author contributions

N.B. and Z.M. contributed to conception or design of the work. N.B., Z.M., V.H., and K.O.C. contributed to the acquisition of data. N.B., Z.M., and W.W. contributed to data interpretation and analysis. N.B., Z.M., V.H., K.O.C., and W.W. contributed to drafting and review of the manuscript. All authors approved the final manuscript.

Supplementary material

Supplementary material is available at Journal of the Canadian Association of Gastroenterology online.

Funding

None declared.

Conflicts of interest

Conflict of interest disclosure forms (ICMJE) have been collected for all co-authors and can be accessed as supplementary material.

Data availability

The data underlying this article are available on reasonable request to the corresponding author.