Lung Transplant Patient Knowledge of Gastroesophageal Reflux Disease and Foregut Risk Factors Associated With Graft Rejection

ABSTRACT

Introduction

Dysphagia, gastroesophageal reflux disease (GERD), and delayed gastric emptying (DGE) are foregut risk factors associated with worse lung transplant outcomes. Transplant education varies across centers, and patient awareness of these risk factors could impact treatment adherence and outcomes.

Methods

Pre‐ and post‐lung transplant patients attending pulmonary rehabilitation between 01/2025–06/2025 were invited to complete a questionnaire developed by a multidisciplinary team to assess knowledge, perceived importance, and self‐confidence in understanding the evaluation and management of foregut risks. Knowledge and confidence of disease factors were evaluated and assessed. Patient demographics, transplant history, and education preferences were collected. Comparisons were made between pre‐ and post‐transplant groups using Chi‐square tests for categorical measures.

Results

Among 67 eligible patients, 48 (71.6%) completed the survey. There were no significant differences in age, sex, race, education level, or household income between pre‐ and post‐transplant groups. Recognition of GERD as a risk factor for graft rejection was similar between pre‐ and post‐transplant groups (24, 85.7% vs. 19, 95.0%; p = 0.30), as was overall confidence in understanding DGE as a risk factor (19, 67.9% vs. 13, 65.0%; p = 0.84). Respondents preferred to receive information on risks from the lung transplant team, but most (n = 28, 58.3%) patients indicated gastroenterologists should be most responsible for educating about and managing foregut risks.

Conclusion

Knowledge of foregut risks and corresponding confidence is high before and after transplant, which may reflect standardized education. Most patients preferred gastroenterology engagement in education on foregut disease, which is currently underutilized and could be an opportunity for multidisciplinary care.

1. Introduction

Gastroesophageal reflux disease (GERD) has been associated with the development of bronchiolitis obliterans syndrome (BOS) [1], the most common cause of chronic lung allograft dysfunction (CLAD) and a major contributor to mortality beyond the initial post‐transplant period [2]. This relationship is likely multifactorial and related to GERD‐associated micro‐aspiration with resultant allograft injury, which may be exacerbated by additional risk factors such as impairments to the swallowing mechanism as well as esophageal and gastric motility [3, 4]. As a result, testing for foregut risk factors may be performed during lung transplant evaluation to identify patients at higher risk for post‐transplant complications or potentially to inform transplant candidacy [3]. Findings of severe GERD or dysphagia may prompt interventions such as anti‐reflux surgery or feeding tube placement to reduce risk of allograft injury [5].

Despite the high prevalence of GERD among lung transplant recipients, these patients infrequently receive gastroenterology consultation [6, 7], and little is known about whether patients understand the rationale for foregut testing or its relevance to graft outcomes. In a multi‐center study of lung transplant recipients with cystic fibrosis, fewer than half of patients were able to identify GERD as a risk factor for graft injury during provider interviews [8]. A greater awareness of the risks of GERD and esophageal dysfunction in the lung transplant population may facilitate early diagnosis and management, particularly given that symptoms alone are insensitive or may be absent [9]. Educational interventions, including e‐learning tools, have been shown to improve lung transplant‐related knowledge and may increase adherence to medications [10]. Similar findings were observed in other transplant recipients, in which educational and behavioral interventions were associated with improved adherence to immunosuppressive medications [11].

Studies examining educational preferences of lung transplant recipients are limited but suggest that patients desire more information about life after transplant and how to sustain long‐term graft function [12, 13]. Federal regulations on organ transplantation require transplant candidates be informed about the evaluation process, surgery, program‐specific outcomes, and psychosocial risks [14]. However, the timing, format, specific content, and amount of education varies substantially by transplant center. Multicomponent interventions integrating patient education and behavioral support appear to be most effective [15, 16].

At our high‐volume lung transplant center, standardized pre‐transplant education includes required video conferencing classes and didactic lectures covering topics like graft rejection and medications. Although patients may recognize graft rejection as a significant concern and many are referred for esophageal testing, connecting this to swallowing disorders and GERD is not always explicitly emphasized. As a result, patient expectations regarding the evaluation and management of GERD and its risk factors in the setting of graft rejection remain unclear [17]. We aimed to characterize understanding and perceptions of foregut risks such as GERD and dysphagia among pre‐ and post‐lung transplant patients. Secondary aims included identifying educational preferences to inform future strategies for transplant education and care delivery.

2. Materials & Methods

We performed a single‐center survey study of adult, English‐speaking patients attending pulmonary rehabilitation between January 2025 and June 2025. A questionnaire was iteratively developed by a multidisciplinary team and piloted among 6 pre‐transplant and 5 post‐transplant patients to ensure survey comprehensibility and content validity. Patient feedback was incorporated into the final version. The study was approved by the Duke Institutional Review Board, and all participants provided written informed consent.

Patients were recruited both before and after lung transplantation, which provided a clinically meaningful comparison exposure for interpreting the study results and exploring patient knowledge, confidence, and educational preferences across transplant timepoints to identify areas for future educational interventions. In the first section of the questionnaire, definitions were provided for key medical terms, such as GERD, delayed gastric emptying (DGE), and rejection. Knowledge of foregut risks was evaluated using true/false questions, and corresponding confidence levels and perceived importance of risks were measured on a 5‐point Likert scale. Patient education preferences were evaluated through multiple choice and rank‐order questions. Biodemographic data including age, sex, highest education level, marital status, and household income was collected. Clinical data, including transplant indication, history of GERD diagnosis or anti‐reflux surgery, prior reflux testing, and current acid suppression medication use were extracted from the health record.

At our institution, patients undergo standardized teaching before transplant covering topics such as medications and graft rejection [16]. Respondents completed surveys at variable points in their education, and class completion rates were recorded. Patients undergoing lung re‐transplantation were excluded to reduce potential bias from prior transplant educational experiences. Participants were recruited using consecutive sampling during scheduled pulmonary rehabilitation visits to minimize selection bias and to facilitate timely recruitment. Surveys were administered in paper format and self‐completed by participants. Each participant completed the survey once, either before or after lung transplantation. Responses were included if at least 75% of questionnaire items were completed with missing data noted where applicable. Comparisons between pre‐ and post‐transplant groups were performed using Chi‐square tests for categorical measures and Mann‐Whitney U tests for continuous measures. Analyses were performed using Stata 19 (StataCorp, College Station, TX).

3. Results

Among 73 lung transplant patients participating in pulmonary rehabilitation during the study period, 67 patients met inclusion criteria and 53 (79.1%) enrolled in the study. There was no significant difference in survey completion rates between pre‐ and post‐transplant groups (90.3% vs. 90.9%; p = 0.94). All participants completed at least 96% of survey items and yearly household income was the most frequently omitted question. The study cohort was predominantly male (29, 60.4%) and White (38, 79.2%), with a median age of 64 years (interquartile range, 55–68). Post‐transplant patients were more likely to have undergone prior gastric emptying studies and upper endoscopy, as well as to be prescribed acid suppressive medication. There were no significant differences in history of GERD, prior anti‐reflux surgery, or other baseline characteristics between groups (Table 1).

TABLE 1.

Participant characteristics.

	Pre‐transplant (N = 28)	Post‐transplant (N = 20)	p‐value
Age, median (years)	65	60	0.08
Sex, male	18 (64.3)	11 (55.0)	0.52
Race			0.83
Asian	1 (3.6)	1 (5.0)
Black	4 (14.3)	4 (20.0)
White	23 (82.1)	15 (75.0)
Ethnicity
Non‐Hispanic	26 (92.9)	19 (95.0)	0.76
English as first language	26 (96.3)	18 (90.0)	0.72
Highest level of education †			0.87
High school or equivalent	6 (22.2)	6 (30.0)
Some college	5 (18.5)	3 (15.0)
College	13 (48.1)	8 (40.0)
Postgraduate	3 (11.1)	3 (15.0)
Marital status †			0.79
Married/co‐habitating	20 (74.1)	13 (65.0)
Separated/divorced or widowed	3 (10.7)	3 (15.0)
Single or never married	4 (14.8)	4 (20.0)
Yearly household income			0.81
Less than $40 000	3 (10.7)	3 (15.0)
$40 000–$79 999	7 (25.0)	3 (15.0)
More than $80 000	13 (46.4)	11 (55.0)
Not reported/declined	5 (17.9)	3 (15.0)
Personally known someone who has received a lung transplant	13 (46.4)	12 (60.0)	0.35
Previously or currently listed at another center	0	2 (10.0)
Transplant indication			0.11
Group A (obstructive)	9 (32.1)	2 (10.0)
Group B (pulmonary vascular/HTN)	0	1 (5.0)
Group C (cystic fibrosis)	0	0
Group D (restrictive)	19 (67.9)	17 (85.0)
Type of transplant
SOLT		2 (10.0)
BOLT		18 (90.0)
Time since pre‐transplant class initiation, median (days)	9.5	105.5
Number of pre‐transplant classes attended, median	2	6
Time from transplant, median (days)		68.0
History of GERD ‡	18 (64.3)	12 (60.0)	0.76
History of anti‐reflux surgery ‡	1 (3.6)	0	0.39
Current use of acid suppression medication	18 (64.3)	20 (100)	0.003
Prior testing §
Gastric emptying scan	1 (3.6)	9 (45.0)	0.0005
Upper endoscopy	7 (25.0)	11 (55.0)	0.034

Note: Data presented as n (%) unless otherwise specified.

^†Pre‐transplant (n = 27).

^‡Prior to transplant, as noted in transplant clinician documentation.

^§Prior to survey completion.

Knowledge of GERD (24, 85.7% vs. 19, 95.0%; p = 0.30) and DGE (23, 82.1% vs. 15, 75.0%; p = 0.55) as risk factors for graft rejection was similar between pre‐ and post‐transplant groups, as was corresponding confidence in responses. Nearly all participants correctly identified clinical scenarios warranting further evaluation for GERD, DGE, or dysphagia (Figure 1). Approximately two‐thirds of participants reported confidence in their understanding of the association between GERD and DGE with graft rejection (Table S1). We also evaluated whether age (< 65 vs. ≥ 65 years) or educational background (less than a college education vs. college education or higher) influenced survey responses. There were no significant differences in objective knowledge as assessed by true/false responses or in self‐reported confidence between groups.

FIGURE 1.

Knowledge of foregut risks and related clinical scenarios as evaluated by (a) true/false questions and (b) corresponding confidence levels on a 5‐point Likert scale.

Most patients were concerned about having or developing foregut dysfunction after lung transplant. Nearly all patients before and after transplant felt it was important to test for these risk factors, understand them (27, 96.4% vs. 19, 95%), and receive education on these topics (26, 92.9% vs. 18, 90%). All post‐transplant patients (100%) felt confident discussing GERD risk factors with their transplant providers, and overall most participants (87.5%) perceived their transplant physicians to be well‐informed regarding the evaluation and management of foregut risks (Table S1).

Most patients reported that the discussion of the risks of GERD (29, 60.4%) and dysphagia (43, 89.6%) were appropriate, though over half (27, 56.4%) perceived suboptimal education on DGE. Pre‐transplant patients most commonly received information on foregut risks from formal education classes (55.0%) and completed a higher median number of classes compared to post‐transplant patients at time of survey (Figure S1, Table 1). Most patients cited a preference for receiving information from lung transplant specialists and pre‐transplant education classes (Figure S2). However, gastroenterology specialists were ranked highest as the team who patients felt should be most responsible for providing information and managing foregut risks (Figure S3).

4. Discussion

Structured education on foregut‐related risks for lung transplant recipients varies. The presence of pathologic GERD is common among this population, and co‐existing conditions such as DGE and swallowing dysfunction can worsen outcomes. Yet, limited data exist on patients’ understanding of these risks in the transplant setting [3]. In this study, we found that among lung transplant patients, knowledge of foregut risks and corresponding confidence was overall high before and after lung transplant. Areas identified for improvement include increased education on DGE and incorporating gastroenterology specialists in the management of their foregut diseases.

Transplant centers play a critical role in providing education to patients, which may shape expectations and perceptions of transplant‐related risks like GERD, dysmotility, and dysphagia, resulting in implications on psychological wellbeing and perceived capability to manage health issues that develop post‐transplant. A quality improvement study of a pre‐transplant education program found that a multimedia education method resulted in lower patient‐reported anxiety and greater satisfaction with the education experience compared to those receiving the standard method [16]. Given that most lung transplant recipients will experience at least one episode of acute rejection during the first year after transplant, education on actionable risk factors is key and could influence adherence to treatment [18].

In our study, knowledge of risks was high, which could reflect the intentional and comprehensive efforts for patient education, and supports the development of standardized educational programs on foregut risk factors across transplant centers. The fact that patients felt comparatively less informed about DGE could be related to a programmatic and historical emphasis on the contribution of GERD specifically to outcomes [5, 19]. We acknowledge the potential risk of recall bias for this finding, which could be particularly relevant among post‐transplant patients as DGE affects approximately a third of such patients [20]. Nonetheless, prior work has associated DGE with higher rates of acute cellular rejection in lung transplant recipients independent of GERD and therefore a greater educational emphasis on DGE among future educational efforts may be warranted [4].

It is not unexpected that post‐transplant participants had greater exposure to standardized education and foregut testing, but this was not associated with significant differences in comprehension of foregut risks compared to pre‐transplant patients. Multiple factors have been identified to contribute to patient health literacy and understanding of transplant information, including age, educational background, and household income [21, 22, 23]. A study of kidney transplant candidates found that having less than a college education and older age were risk factors for limited health literacy [22]. In our cohort, we observed no statistically significant difference in objective knowledge or reported confidence by age or educational background. Both pre‐ and post‐transplant patients similarly reported it was important for them to understand and receive education on foregut risks. Prior work supports the use of longitudinal educational interventions and suggests that optimal transplant education may require reinforcement of specific content over time [24, 25].

Although most patients reported receiving information on foregut risks from transplant specialists and formal education classes, they preferred gastroenterology engagement in education and management of foregut disease. This could identify a desire for formal consultation with gastroenterology, beyond foregut testing alone. While the results from the current study are limited to a single center, it is clear from national data that routine esophageal testing and assessment by gastroenterology are not standardized [7]. Heterogeneity in preferences for the remaining educational formats, including online materials, written resources, and transplant support groups further supports the use of multimodal educational strategies [10, 12, 16].

Whether increased knowledge of foregut risks is associated with improved adherence or clinical outcomes remains unclear. Prior studies of kidney and lung transplant patients suggest that knowledge or health literacy alone do not reliably predict adherence or posttransplant outcomes [26, 27]. However, other work in a separate transplant population found that lower health literacy may be associated with decreased adherence to immunosuppression and higher knowledge of symptoms was associated with lower rates of graft rejection [22, 28, 29]. Future studies to evaluate changes in knowledge over time and associations with measurable outcomes, including adherence to acid suppression therapy and completion of recommended esophageal testing are worthwhile.

This study had several limitations. As a large transplant center, facets of the education program at this institution may differ from other centers. While our study cohort was demographically similar to the U.S. adult lung transplant population with respect to age, sex, race and educational attainment [30], the study remains limited in generalizability. The survey instrument was iteratively developed by a multidisciplinary team but was not formally validated and the cross‐sectional study design limits the ability to assess causal relationships. We acknowledge that the overall respondent number may provide insufficient power to draw definitive statistical conclusions between groups. Furthermore, the high level of knowledge observed before and after transplant likely in part reflects our structured pre‐transplant education and suggests that standardized education may be warranted. Larger multi‐center longitudinal studies are needed to further evaluate optimal education strategies.

In conclusion, lung transplant patients demonstrated overall high knowledge and confidence regarding the evaluation and management of foregut risks before and after transplant, likely reflecting standardized education practices. However, patient preference for gastroenterology involvement suggests an opportunity to strengthen multidisciplinary education and delivery of care. These findings could stimulate the development of national standardized educational strategies and performance metrics that might be evaluated in future, multi‐center studies.

Author Contributions

Annie L. Wang: conceptualization, data collection/interpretation, drafting article, approved final draft. Jacob A. Klapper: conceptualization, critical review, editing and approved final draft. John M. Reynolds: conceptualization, critical review, editing and approved final draft. Lauren Rich: conceptualization, critical review, editing and approved final draft. Sandra L. Gerity: conceptualization, critical review, editing and approved final draft. David A. Leiman: conceptualization, supervision, data interpretation, drafting article, critical review, editing and approved final draft

Conflicts of Interest

All authors declare no relevant conflicts of interest.

Supporting information

Supporting Information: ctr70650‐sup‐0001‐SuppMat.docx

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.