“You Can Lead a Horse to Water, but You Can’t Make It Drink”. Gastroenterology Healthcare Professionals’ Perceptions of Reasons for Patient Non-Adherence to Inflammatory Bowel Disease Prescribed Medication: A Qualitative Study

Introduction

Crohn’s disease (CD) and ulcerative colitis (UC), collectively known as inflammatory bowel disease (IBD), are chronic, incurable inflammatory conditions of the gastrointestinal tract. Symptoms vary from mild to severe and may include abdominal pain, bloody diarrhea, bowel urgency, weight loss, fatigue, and psychological comorbidities such as anxiety and depression.^1–3

Pharmacological management of IBD typically follows a stepwise approach, progressing from aminosalicylates to corticosteroids, immunomodulators, and biologics until effective inflammation control and remission maintenance are achieved. Treatment success is highly dependent on adherence. Non-adherence in IBD is common, affecting up to 72% of patients, and is associated with more frequent and severe relapses, poorer disease control, and reduced quality of life (QoL). However, non-adherence is not unique to IBD, being a challenge across many chronic conditions.⁴ At a societal level, it contributes to increased healthcare utilization and costs.⁵

Despite this, evidence suggests that healthcare professionals (HCPs) often underestimate the prevalence and impact of non-adherence. More than half of gastroenterologists, trainees, and IBD nurse specialists report believing it to be infrequent.⁶

Physicians are poor at identifying patients with low adherence, correctly recognizing only one-third of such cases.⁵ Accuracy is much higher for identifying adherent patients.⁵ This under-recognition limits opportunities for intervention.^7,8 Although most HCPs acknowledge that improving adherence would lead to better outcomes,^6,9 adherence is not routinely assessed.¹⁰ When medication is reviewed, review is often prompted by treatment failure or recurrent relapse and typically undertaken by less experienced clinicians. Moreover, methods used, such as unstructured patient interviews are unvalidated and are frequently unreliable subjective adherence assessments.⁵

Evidence demonstrates that 99% of HCPs acknowledge that improving adherence would positively impact health outcomes in IBD.⁶ Identifying low or non-adherence and the reasons for it, are considered key to improving adherence, and improving patient health.^5,6,9

Barriers to adherence are complex and multifactorial, encompassing patient, treatment, HCP, and health system factors.^4,11 They may be intentional or unintentional, and modifiable or not.¹¹ Common patient-reported barriers include poor disease or treatment understanding, medication side-effects or side-effect concerns, difficulties with regimen complexity, limited medication access, and forgetfulness. Psychological factors such as depression, anxiety, and negative illness and treatment beliefs also play an important role.¹¹ Few studies have explored HCPs’ perspectives on adherence, despite evidence of gaps between patient and clinician views on symptoms, treatment priorities, and disease impact.¹² Understanding HCPs’ beliefs about medication non-adherence in IBD is therefore critical to improving support strategies, aligning perspectives, and ultimately enhancing adherence and outcomes.

This study aimed to explore HCPs’ perceptions of the reasons for intentional and unintentional non-adherence to prescribed medications in people living with IBD. Objectives were to: i) obtain detailed insights into HCPs’ experiences of prescribing and monitoring IBD medications; ii) identify perceived factors influencing patient adherence and HCP engagement in adherence support; iii) elicit recommendations for strategies to promote adherence, targeting both patients and HCPs, and to inform the development of future adherence interventions.

Materials and Methods

Study Design

This qualitative study employed in-depth, one-to-one semi-structured interviews.

Participants

We aimed to recruit approximately 20 HCPs working in the United Kingdom's (UK) National Health Service (NHS) gastroenterology or IBD services. Recruitment was conducted online though Crohn’s and Colitis UK (CCUK), Bowel Research UK, the Royal College of Nursing IBD Network (via Facebook), and snowball sampling. Eligibility criteria included being a qualified HCP (gastroenterologist, IBD nurse, pharmacist, dietitian, psychologist, psychiatrist), employed in an NHS gastrointestinal service for at least six months. Purposive sampling ensured diversity in professional background, length of service, hospital and clinical role, and demographics,¹³ with efforts made to capture a wide range of perspectives on medication adherence in IBD.⁴

Data Collection

Interviews were conducted via Microsoft Teams between June and November 2023 using a piloted topic guide (Supplementary Figure 1), informed by prior systematic and scoping reviews.^4,11 The guide covered healthcare roles, prescribing and monitoring responsibilities, perceptions of adherence and non-adherence, observed adherence behaviors, and support strategies and barriers. All interviews were audio recorded, transcribed verbatim by a professional transcriber, and anonymized prior to analysis. All interviews were conducted by KK, who had no prior relationship with participants. Field notes and a reflexive journal were kept. Recruitment continued until apparent data saturation was reached.¹⁴

Data Analysis

Data familiarization involved repeated reading of transcripts and review of recordings.¹⁵ Reflective thematic analysis (RTA) followed Braun and Clarke’s framework,^16,17 using primarily inductive coding,¹⁸ supplemented by deductive coding informed by researcher experience and existing literature. Coding was undertaken in Excel and with paper-based methods. Initial open coding generated emerging themes (eg, “non-adherence normalization”, “adherence honesty”), which were refined iteratively into broader themes and sub-themes.^18,19

Second level analysis aggregated codes into major themes (Figure 1). Following theme creation, these were mapped to established models of behaviour,^16,17,20 including the:

• Theoretical Domains Framework (TDF)²¹ to review HCPs’ perspectives,
• COM-B,²² to analyze HCPs’ behaviors and
• The Theory of Planned Behavior (TPB)²³ to explain patient behaviors (Figures 2 and 3).

Figure 1 Themes and Sub-themes. Figure 1 outlines the four main themes and accompanying sub-themes identified. Abbreviation: HCPs, Healthcare Professionals.

Figure 2 The Theoretical Domains Framework and COM-B model. Figure 2 relates the COM-B model and the Theoretical Domains Framework to example reasons for medication non-adherence in IBD patients, from the perspective of a Healthcare Professional. Abbreviation: IBD, Inflammatory Bowel Disease; Tx, Treatment.

Figure 3 The Theory of Planned Behavior model. Figure 3 relates the Theory of Planned Behavior model to explain reasons for medication non-adherence in IBD patients, from their perspective.

Trustworthiness

Rigor was addressed through confirmability, credibility, dependability and transferability.¹⁵ Reflexivity was embedded throughout data collection and analysis to mitigate potential bias.

The RTA group comprised researchers with expertise in qualitative methods, nursing, psychology and neuroscience, alongside one individual living with IBD, to strengthen authenticity and ensure representation. All coders received training and support from the lead researcher (KK).

Each transcript was independently coded by at least two researchers. KK and AJ coded all transcripts, supported by three supervisors (WCD, TC, CN). Discrepancies were resolved collaboratively in team meetings. In total, 624 initial codes were identified and refined into themes and sub-themes.

Ethics

Ethical approval was granted by King’s College London Research Ethics Committee (HR/DP-22/23-34676). Written informed consent was obtained from all participants prior to interview, which included publication of anonymized responses/direct quotes. Anonymity and confidentiality were maintained through allocation of participant numbers. Participants could withdraw at any time and request withdrawal of their data within two weeks post-interview, although no one chose to do so. The study was conducted in accordance with the Declaration of Helsinki.²⁴

Results

Recruitment

Forty-one individuals expressed interest in the study and received a participant information sheet. Three were ineligible. Thirteen did not complete the eligibility questionnaire or consent form. Of the remaining 25 eligible participants, one was not invited due to purposive sampling saturation. Twenty-four were invited. One did not attend and two cancelled, leaving twenty-one participants completing interviews. All interviewed participants consented to optional video recording. Interviews lasted between 48–84.5 minutes (mean duration: 64 minutes). Total interview time was 22.5 hours.

Socio-Demographic and Clinical Data

Table 1 summarizes participant characteristics. The majority were consultant gastroenterologists or IBD nurse specialists, with additional representation from pharmacists. Two-thirds of participants were female. Most held either a master’s degree or research doctorate. Clinical experience ranged from 6–36 years (mean 18.6 years), with IBD-specific experience ranging from 2–30 years (mean 13.2 years). The majority were employed in teaching hospitals, with a minority based within general hospitals.

Table 1 Participants’ Professional and Demographic Characteristics

Regarding clinical workload, participants typically managed 1–3 new IBD patients per week and 6–15 follow-up patients. Over half reported spending ≥71% of their working week in clinical practice, while less than 10% of their time was dedicated to IBD research or other clinical research.

Themes

Four main themes and associated sub-themes were identified (Figure 1). These are described below, supported by verbatim quotes (Table 2), referenced by participant details eg, P (participant number), M/F (male/female), and profession.

Table 2 Themes, Sub-Themes and Example Quotations Reflecting Healthcare Professionals’ (HCPs’) Perspectives on Adherence to IBD Medication

Theme 1: What HCPs Think About Their Patients’ Adherence?

It’s not as bad as it sounds [be]cause most people will be taking it most of the time. It’s just that odd one, missing the odd dose. (P18, M, Consultant Gastroenterologist)

This theme explored HCPs' perceptions of why people with IBD do or do not adhere to prescribed medication, and the extent to which patients are open about their behavior.

To Adhere or Not?

I think in general most patients will come to the decision to take them. (P6, F, IBD Nurse Specialist)

HCPs described adherence as a complex and dynamic, and individualized process, shaped by patient, treatment, and contextual factors (Table 2).

Most patients were perceived to accept treatment and be adherent, when the rationale was clearly explained, aligning with personal values, such as disease control and avoiding surgery (Table 2, Title-theme 1 quote). Securing patient “buy-in” at treatment initiation was considered essential for long-term adherence, involving clear explanations of necessity, risks, and benefits. Confidence and trust in the healthcare team, and motivation to improve health each promoted adherence (Table 2, quote 1.1). By contrast, non-adherence could be intentional or unintentional (eg, forgetfulness) and influenced by beliefs, mental health, poor understanding of disease or medication, and external influences (family, peers, online forums, lifestyle) (Table 2, quote 1.1a). Some patients preferred complementary and alternative medicine, highlighting the importance of accurate information to counter misconceptions.

Side-effects, both actual and anticipated, were considered highly influential (Table 2, quote 1.1b). Adherence was more likely when side-effects were minimal but decreased when patients were asymptomatic (Table 2, quote 1.1c). Route of administration also played a role: oral therapy was generally considered the most acceptable, although large Pentasa tablets and granules were noted as difficult to swallow and unpleasant in taste (Table 2, quote 1.1d).

Subcutaneous and rectal therapies were considered as higher risk for non-adherence due to unfamiliarity or administration difficulties. Complex regimens, high pill burdens or polypharmacy, especially without imminent clinic appointments, were further barriers. Conversely, clear medication benefits, such as symptom relief and improved QoL, with previous positive experiences of treatment, strongly encouraged adherence (Table 2, quote 1.1e).

Lifestyle and social circumstances (eg, busy schedules, travel, disorganization, or homelessness) could disrupt medication routines (Table 2, quote 1.1f). Limited treatment access, treatment storage difficulties, or high treatment costs added further obstacles.

Overall, while most HCPs believed their patients were generally adherent, they emphasized that adherence was fluid, situational, and influenced by the interplay of personal, clinical, and social factors (Table 2, quotes 1.1a–f).

Adherence Honesty

People tell me they take their medications, but I know that in reality a lot of people don’t take their medication. So, I don’t know if people are always being 100% honest with me about taking it. (P6, F, IBD Nurse Specialist)

HCPs reflected on the challenges of ensuring patient honesty around adherence.

Most patients were perceived as generally honest, though one consultant estimated that approximately 15% were “honest non-adherers”. Others noted a mismatch between patient behavior and reported adherence, observing that those who readily agreed to everything were not always fully truthful. Several HCPs felt that patients were not deliberately lying but wished to please their clinician, whilst avoiding their disappointment. By contrast, patients who actively questioned or took ownership of their treatment were viewed as more likely to be candid. A psychiatrist suggested it was good practice to assume all patients might, at times, be non-adherent, as this expectation could create an open environment in which honesty was more likely.

Dishonesty was considered most likely when patients felt guilty about non-adherence (Table 2, quote 1.2) or feared being judged or reprimanded by their HCP (Table 2, quote 1.2a).

Consultants in particular emphasized the importance of honesty, describing it as essential to avoid wasted time, reduce misaligned expectations, and inform safe and appropriate prescribing decisions (Table 2, quote 1.2b).

Several HCPs reported that they sought to reassure patients that they had the right to choose not to adhere but stressed the importance of being open about such decisions. Transparency was seen to facilitate frank discussions about the risks of non-adherence and to support collaborative decision-making (Table 2, quote 1.2c).

Adherence honesty was regarded as fundamental to foster long-term, high-quality relationships between patients and HCPs while also ensuring safe clinical practice (Table 2, quote 1.2d).

Patient Sub-Groups

You can lead a horse to water, but you can’t make them drink and we’ve done everything for them and they’ve just not turned up or they’ve not engaged. (P16, F, Consultant Gastroenterologist)

HCPs identified several patient sub-groups perceived to be at greater risk of non-adherence.

Younger patients were most frequently described as non-adherent, often seeking greater autonomy in treatment decisions (Table 2, quote 1.3a). Transitioning from pediatric to adult services was viewed as a particularly high-risk period, with developmental and social changes disrupting routines (Table 2, quote 1.3b). By contrast, older patients were generally seen as more compliant and engaged, though non-adherence could arise from polypharmacy, comorbidities, or forgetfulness, particularly in those living alone (Table 2, quotes 1.3c-d).

Low health literacy, limited education, and financial constraints were considered key barriers. Some patients reportedly missed infusions to avoid loss of earnings, while certain occupational groups, such as farmers, were seen as less likely to adhere (Table 2, quote 1.3e).

Younger men were described as the least adherent, influenced by embarrassment, denial of illness, and a desire to appear “normal”. One HCP referred to this group as the “naughty boys’ club” (Table 2, quote 1.3f). Middle-aged men, particularly if single, were perceived as more forgetful and disorganized. Women, by contrast, were more likely to express concerns about fertility, pregnancy, and appearance but were considered more open to rectal therapies and psychological support, factors which could promote adherence.

Ethnic and religious beliefs were frequently cited as influencing adherence, for example reluctance among some Muslim women to use rectal treatments. Language barriers were described as contributing to misunderstanding and miscommunication.

Across professions, HCPs voiced frustration with a small subgroup who remained disengaged despite support (Table 2, quote 1.3g), often illustrated with the repeated phrase “you can lead a horse to water…” (Table 2, quote 1.3). Some questioned whether these patients were fully informed, suggesting that more comprehensive discussions might help address gaps in understanding.

Language with Patients

I don’t think I’d use any of those words to patients themselves. They are my words. They’re our words, not their words. (P9, F, Nurse Consultant)

HCPs were very conscious of the language they used when discussing medication and treatment programmes with patients, aiming to avoid judgement or blame, particularly in conversations about non-adherence. Most preferred simple, clear, and transparent “patient-level” language that they felt patients would easily understand. Terms such as adherence, compliance and concordance were rarely used directly with patients, as they were not considered meaningful or relatable (Table 2, quotes 1.4, 1.4a-b). They had a range of what they felt were “patient-facing” alternatives, including medication taking.

While these terms were recognized within professional discourse, HCPs held differing views on their value. Compliance was widely regarded as outdated and paternalistic. Adherence was seen as the most acceptable of the three, though often avoided in patient interactions. Concordance was rarely used, perceived as poorly understood by both patients and some HCPs; however, for those who did use it, the term reflected partnership and shared decision-making rather than authoritarian practice (Table 2, quote 1.4c).

Several consultants and pharmacists disagreed that all three terms carried negative connotations, implying patients were “behaving badly”. As such, they deliberately avoided their use in clinical encounters (Table 2, quotes 1.4d-e).

Theme 2: What is Done by HCPs to Promote Adherence?

Methotrexate Monday, Folic acid Friday. (P16, F, Consultant Gastroenterologist)

This theme explored how HCPs sought to promote adherence to IBD medication in clinical practice. Four interrelated sub-themes were identified.

Empathic Care and Reassurance

They’re much more compliant if we work with them rather than against them. (P5, F, IBD Nurse Specialist)

A key sub-theme was the importance of empathy, reassurance, and personalized emotional support in promoting adherence. HCPs consistently emphasized recognizing each patient as an individual, with one noting, “patients don’t fit into boxes” (Table 2, quote 2.1a). Respecting patient choice and autonomy by offering treatment options that aligned with individual preferences were viewed as critical. HCPs saw their role as one of compassionately guiding patients and supporting informed decisions (Table 2, quote 2.1b).

Sharing responsibility for care and collaborating flexibly in line with patient goals were regarded as key to sustaining adherence. Developing long-term relationships was seen as particularly valuable in the context of chronic disease, enabling trust and rapport to build over time. Such trust was thought to increase the likelihood that patients would feel comfortable disclosing concerns or non-adherence, with nurses most often highlighting this dimension of care (Table 2, quote 2.1c).

Active listening was frequently described as a strategy to understand patient’s perspectives on treatment, daily life and challenges. Accessible support, particularly at diagnosis, was considered essential. Examples included open-door policies, helplines, proactive outreach, and regular monitoring (Table 2, quote 2.1d). Providing multiple avenues of contact was seen as important to ensure equitable access to care. Conversely, miscommunication or mismatched perceptions between patients and HCPs were viewed as barriers that could undermine treatment engagement and adherence.

Bidirectional Information

No old-style leaflets no. If I want someone to look at a leaflet about Adalimumab or Azathioprine or Vedolizumab or Ustekinumab I’ll say look at the CCUK web, just Google Ustekinumab CCUK. (P1, M, Consultant Gastroenterologist)

Information provision, both at diagnosis and when discussing medication options, was considered as a core aspect of care, enabling patient understanding and informed decision-making. HCPs typically began by outlining key facts about treatment purpose, mechanism, and duration, supported by written resources or online materials. Many directed patients to the CCUK website as a trusted, accessible source that patients could revisit in their own time (Table 2, quote 2.2).

Risks, side-effects and benefits of treatment were discussed openly and transparently, often including the consequences of non-adherence. Several HCPs found analogies, anecdotes and quantified statistics helpful in clarifying risks and providing reassurance (Table 2, quotes 2.2a-b). Framing relative risk in this way was seen to strengthen patients’ confidence in both treatment rationale and the professional capacity of their HCP, promoting informed engagement. Patients were actively encouraged to ask questions and share concerns, with HCPs describing this as an opportunity to troubleshoot collaboratively (Table 2, quote 2.2c).

However, views diverged on the extent of information appropriate at diagnosis. Some HCPs, particularly female gastroenterologists, were reluctant to inform patients that medication would necessarily be life-long, as this was not always the case (Table 2, quote 2.2d). Nurses, in particular described presenting treatment as a “trial” to reduce the perceived pressure of starting therapy, while gradually building patient trust (Table 2, quote 2.2e). Overall, bidirectional information sharing was strongly favored, both to foster confidence in treatment choices and to support more accurate assessment of adherence (Table 2, quotes 2.2f-g).

Practical Tips and Advice

Alarms or the [medication] apps… Physically putting it somewhere, stick it in your knicker drawer or where your keys are - so that you literally have to trip over it. (P24, F, Gastroenterology Dietician)

HCPs discussed a range of practical strategies, both implemented in clinical practice and recommended to patients, to support medication adherence. Flexible and feasible treatment regimens, such as once-daily, weekly, or monthly schedules, were considered particularly effective, as their simplicity made them easier to integrate into daily life (Table 2, quote 2.3a). Personalizing medication plans to fit individual lifestyles was emphasized, with nurses often providing supervised training and demonstrations to build confidence in treatment administration (Table 2, quote 2.3b).

Memory aids, including alarms, phone apps and visual prompts, were frequently suggested for patients who regularly forgot their medication. Linking medication-taking to daily routine was also encouraged, helping to establish it as a habit (Table 2, quote 2.3). Family members or friends were sometimes enlisted as external reminders, as well as providing practical assistance with self-injection and emotional support for continued adherence (Table 2, quote 2.3c).

Organizational tools were also widely recommended, including diaries, calendars, post-it notes, and dosette boxes, with the latter also serving a storage function (Table 2, quote 2.3d). However, dosette boxes were acknowledged as unsuitable for certain medications or patients, with some gastroenterologists noting that younger people in particular might find them unacceptable. In such cases, more modern or creative alternatives were suggested, such as wearable reminders or memorable acronyms, for example, “Methotrexate Monday, Folic acid Friday”, (P16, F, Consultant Gastroenterologist) (Table 2, Title-theme 2 quote).

Clinical Duties and Responsibilities

There’s a duty of care you need to let them know what you think the likely outcome and possible worst outcome that might be. (P13, F, Gastroenterology Specialist Registrar)

HCPs highlighted their shared responsibilities within the multidisciplinary team (MDT) to provide holistic and collaborative care in support of adherence. Presenting a united front, maintaining clear roles, and drawing on complementary expertise were regarded as fundamental to effective practice.

Ongoing monitoring and follow-up, including updates, risk assessments, and therapeutic drug monitoring (TDM), were considered essential for guiding treatment adjustments and supporting adherence. However, patients were sometimes perceived to undervalue monitoring, particularly when asymptomatic, underscoring the need for reinforcement of its importance (Table 2, quote 2.4a).

Balancing evidence-based prescribing protocols with personalized care was described as a constant challenge. Standardized formularies and treatment algorithms provided structure, but HCPs stressed the importance of tailoring regimens with compassion while also considering medication costs. Sharedcare arrangements with General Practitioners (GPs), home-care delivery services, and community pharmacies were viewed as potentially supportive but often unreliable, creating additional barriers to adherence (Table 2, quote 2.4b).

Many HCPs described a duty of care to optimize adherence but also to manage patient expectations transparently. Clear communication regarding disease severity and the short- and long-term benefits of treatment was seen as vital to ensuring safety and informed decision-making (Table 2, quote 2.4).

Honesty, openness to questions, and accountability when treatment failed were all framed as professional responsibilities. Several HCPs also reflected on the importance of recognizing the limits of their scope of practice and engaging in refresher training to ensure that skills were applied consistently and effectively in clinical care.

Theme 3: Challenges for HCPs in Adherence Support?

Medicine would be really easy if you have one patient and we would all be absolutely brilliant, not just doctors, but healthcare workers, if you had more time and less patients to look after. (P18, M, Consultant Gastroenterologist)

Theme 3 focused on the challenges HCPs encountered in supporting adherence in IBD, encompassing everyday service pressures, adherence specific barriers, and difficulties arising from their own practice.

Day-to-Day Challenges

We probably don’t have the time or resources to tackle it [adherence] as well as we could do really. I probably admit that I don’t routinely ask about adherence as well as I should do. (P21, M, Lead Pharmacist Gastroenterology)

HCPs described how adherence was often not routinely discussed with patients, largely due to heavy workloads, staff shortages, and limited MDT expertise (Table 2, Title-theme 3 quote). These systemic pressures, particularly acute for IBD nurses, meant adherence monitoring was frequently deprioritized (Table 2, quote 3.1). Lengthy waiting lists, including delays of up to a year for psychological referrals, compounded the problem, with many services lacking access to psychological support altogether (Table 2, quote 3.1a). Financial pressures and the rising cost of biologics also influenced prescribing decisions, occasionally affecting adherence when patients expressed brand preferences.

Service delivery models further shaped adherence support. Expanding waiting lists and time constraints led some services to adopt Patient Initiated Follow-up (PIFU) (Table 2, quote 3.1b). While this reduced demand, HCPs acknowledged that it risked leaving patients feeling unsupported, potentially undermining adherence.

Several HCPs emphasized that investing time with patients early in their “IBD journeys” could foster long-term engagement, with adherence discussions seen as particularly valuable at this stage (Table 2, quote 3.1c).

Rigid care pathways were also perceived as barriers, particularly when complex cases required more flexibility than resources allowed. Increasing daily queries meant many services could not respond within their specified timeframe (Table 2, quote 3.1d).

Patient-level challenges included unrealistic expectations and increased demand for care, exacerbated in some instances by post-COVID telephone rather than face to face appointments, which were seen to reduce satisfaction, hinder communication, and contribute to non-adherence (Table 2, quote 3.1e).

Adherence Specific Challenges

Sometimes you do think I wish we could go back 30 years where they would just be like, well, the doctor said I should do it. So, I’m just gonna do it because you’re like I know your life would be so much better. (P14, F, Consultant Gastroenterologist)

HCPs identified several challenges that related specifically to adherence. Some stemmed directly from patient-level barriers, such as needle phobia, which often went unaddressed due to limited service capacity. While the availability of multiple treatments was seen by some as an opportunity to enhance patient choice and support adherence, others felt it could encourage unnecessary switching without tackling underlying concerns (Table 2, quotes 3.2a-b).

Patients who blamed themselves for previous non-adherence were described as particularly difficult to support, especially in the absence of coordinated healthcare approaches (Table 2, quote 3.2c). Further challenges involved patients who mistrusted medication or preferred dietary supplements, and those who were asymptomatic but needed ongoing treatment (Table 2, quote 3.2d).

Managing patients perceived as “defiant”, “disengaged”, or “dishonest” was described as frustrating, particularly when non-adherence remained undetected and TDM was unsuitable for certain treatments (Table 2, quote 3.2). However, several HCPs acknowledged the tension between respecting patient choice and reinforcing the clinical importance of adherence, noting this balance was not always achievable.

HCPs also recognized that many influences on adherence lay outside the clinic. Limited treatment access, unreliable home-care provider services, and external influences from peers, family, online forums, or anecdotal reports were all seen as shaping patient behavior and beliefs (Table 2, quotes 3.2e-f).

Am I Part of the Problem?

I’m hoping I’m not normalizing it so much that they think it’s OK to not do it. So you sort of reinforce it, you know if you’re just missing it, you know now and again that’s OK. But obviously if you miss it regularly, it is more problematic. I don’t think I normalize it that much. (P14, F, Consultant Gastroenterologist)

Some HCPs, particularly females, reflected on how their practice might inadvertently contribute to non-adherence, with one nurse describing it as significant concern (Table 2, quote 3.3a). For many, the interview prompted reflection on their role, as they had tended to focus on avoiding judgmental or punitive approaches that framed patients as “bad” if they did not adhere (Table 2, quote 3.3b). Doctors particularly, described using normalization strategies to reduce blame and reassure patients that occasionally missing medication was “common” (Table 2, quote 3.3c). However, one consultant acknowledged the potential risk of such reassurance in undermining adherence (Table 2, quote 3.3).

A lack of empathy, particularly when patient concerns were dismissed, was seen as unhelpful. Communication gaps were also identified, including insufficient explanations about IBD and its treatments without checking patient understanding and encouraging questions. Yet the risk of overwhelming patients with excessive information during initial consultations was also recognized.

Several participants admitted that adherence was not consistently monitored or “owned” by clinicians. Addressing non-adherence was perceived as potentially difficult or confrontational, and some acknowledged making assumptions about non-adherence without objective evidence (Table 2, quote 3.3d). Others reported the opposite tendency: assuming adherence unless patients raised concerns themselves, bypassing routine monitoring (Table 2, quote 3.3e).

Many HCPs felt underprepared to support adherence. Most reported no formal training, aside from a few pharmacists who had encountered it during their professional education. Few were familiar with behavior change theories, and there was uncertainty over who should take responsibility, with psychologists often assumed to be best placed. Overall, there was consensus that much about non-adherence remains poorly understood (Table 2, quote 3.3f).

Theme 4: What Next to Support HCPs and Patients to Achieve Adherence?

A drug is only as good as if the patient takes it or turns up for the treatment. (P10, F, IBD Nurse Specialist)

The final theme explored strategies to enhance adherence support, with sub-themes addressing the needs of specific patient cohorts and service improvements, as identified by HCPs.

What’s Needed for Patients?

I think mostly when it’s an unintended choice with enough reassurance and support, you can get over that hump. (P14, F, Gastroenterology Consultant)

HCPs emphasized that patients require structured, ongoing support to maintain adherence, beginning at the start of their IBD journey (Table 2, quote 4.1a). This includes comprehensive education covering treatment benefits and risks, alongside managing realistic expectations. A range of reliable digital and non-digital resources, such as CCUK, should be offered to patients, families, and carers to facilitate self-learning and understanding (Table 2, quote 4.1b). Practical tools and interactive resources were seen as beneficial in promoting adherence. Examples included personalized blister packs, text message reminders, and “flare cards” to support self-management and empower patients (Table 2, quote 4.1c). Patient contact was recommended to be person-centered, regular, and accessible, with HCPs encouraged to build rapport through attention to personal details. The use of personal “hooks” (additional details about that patient) in correspondence was suggested by some nurses to help remember patients. “Patient meets” connecting individuals with peers who have experience with treatment were viewed as effective in alleviating concerns and fostering reassurance (Table 2, quote 4.1d). Peer support through local groups and patient experts was highlighted as a means to normalize living with IBD, reduce isolation, and share practical strategies. HCPs also stressed the importance of consistently monitoring and encouraging patient motivation, recognizing that low motivation increases non-adherence risk (Table 2, Title-Theme 4 quote). Overall, participants agreed that with sufficient support and guidance, patients are capable of achieving and sustaining adherence to their IBD medication (Table 2, quote 4.1).

What’s Needed for HCPs?

I think it’s probably we could just do better with asking about adherence on a routine basis. (P21, M, Lead Pharmacist Gastroenterology)

HCPs recognized that they could directly influence adherence support through more consistent approaches. Regular monitoring, including follow-up appointments, TDM, risk assessments, and adherence protocols, were considered essential. Staying informed on IBD adherence research could help reinforce the importance of prioritizing adherence support (Table 2, quote 4.2a), and a way to promote best practice and flexible, patient-centered care. Such methods were seen to enhance treatment efficacy, patient safety, and timely adjustments to therapy. HCPs emphasized the importance of integrating psychological, social, and medical care through effective multidisciplinary teamwork and communication, ensuring patients’ broader needs beyond IBD were met (Table 2, quote 4.2b). Improved shared care agreements with GPs were identified as a strategy to facilitate referrals, enhance collaborative care, and enable treatment accessibility. Many suggested that adherence support should be embedded across professional roles, for example pharmacists overseeing drug monitoring, nurses providing first-line support, and specialist teams managing complex cases. Expert HCPs could liaise with charities and pharmaceutical companies to deliver coordinated adherence education and peer-support programmes (Table 2, quote 4.2c).

Training for HCPs was widely recommended, with a preference for flexible, practical, scenario-based modules that incorporated real-world cases, behavior change techniques, and communication skills (Table 2, quote 4.2d). Barriers identified included time constraints, competing priorities, and the need to ensure training remained relevant and applicable (Table 2, quote 4.2e). Online delivery was favored for convenience, though hybrid models combining in-person sessions were suggested to reinforce learning. Short, interactive modules, potentially with incentives and multiple sessions to enable application in practice, were seen as optimal. HCPs anticipated that improved adherence resulting from such training could have a substantial impact on patient outcomes (Table 2, quote 4.2f).

What’s Needed for Healthcare Services?

I’m quite protective about wanting to see our patients in a specialist service so that we can give them the best service regardless of how extensive or complex their disease is. (P4, F, Advanced Clinical Nurse Practitioner)

HCPs emphasized the need for a culture shift in clinical practice to address systemic and policy barriers that impede adherence support. Maintaining IBD as a specialist service with clear referral pathways and designated adherence leads was considered essential (Table 2, quote 4.3).

Many advocated moving from a purely medical model to a holistic, partnership-driven approach, with personalized care planning in which HCPs and patients collaborate to support adherence (Table 2, quote 4.3a). However, delivering holistic care was recognized as challenging due to time constraints (Table 2, quote 4.3b). Peer review and service audits were suggested as mechanisms to strengthen adherence support and service delivery (Table 2, quote 4.3c).

HCPs proposed practical improvements, including modifications to medication form and size by pharmaceutical companies. This could enhance usability, alongside expanded tools to support treatment planning and organization (Table 2, quote 4.3d). Adjustments to prescription charges were viewed as another potential strategy to improve adherence.

Concerns were raised about home-care drug delivery systems, which can compromise continuity of care and limit adherence monitoring, increasing non-adherence risks (Table 2, quote 4.3e). HCPs expressed hope that a recent UK parliamentary review of home-care services could improve patient care and reduce pressure on the NHS.

Adherence Interventions?

And the bottom line is, people really like talking to people. (P18, M, Consultant Gastroenterologist)

HCPs suggested a range of interventions to support IBD medication adherence, with technology-based tools being prominent. Reminders and alarms were widely endorsed to assist with both medication-taking and attendance at blood tests or appointments (Table 2, quote 4.4a). Ideal digital tools were described as interactive, visually engaging, providing real-time personalized feedback, and accessible to both patients and clinicians. Integration within healthcare systems was considered important to prioritize patient experience over clinic throughput. However, HCPs cautioned that over-reliance on digital approaches could weaken rapport, limit long-term engagement, and exacerbate health inequalities.

Human-based interventions remained highly valued. These included in-person or telephone consultations for education and monitoring, as well as carefully facilitated peer support, particularly recommended by female HCPs, to avoid dominance by individual participants or the provision of unhelpful advice (Table 2, quotes 4.4b-c). Practical organizational strategies, comparable to dosette boxes, were also suggested to support routine medication-taking (Table 2, quote 4.4d). Some HCPs advocated for blended approaches combining digital and human interactions, allowing interventions to be tailored to individual patient preferences (Table 2, quote 4.4).

One consultant recommended multi-component, stepped-care approaches to structure adherence support in phases, analogous to the “Ready, Steady, Go” programme used in care transitions. Patients could progress from not ready, to preparing, to being ready for medication, with support adjusted accordingly (Table 2, quote 4.4e).

Overall, HCPs emphasized that flexibility is essential, as no single approach fits all patients. Success relies on matching the right intervention to the right individual, accommodating personal needs, preferences, and circumstances.

Discussion

This study explored HCPs’ perceptions of the factors influencing adherence to IBD medications and strategies to support patients, highlighting the complex, multi-level nature of adherence. This is the first qualitative study of its kind. Aims were achieved through conducting interviews with a range of gastroenterology HCPs, offering insights into clinical practice and informed recommendations to enhance adherence in future care.

Theoretical Background

Themes generated from the study were compared against three established theoretical approaches to better understand IBD medication adherence, whilst offering clarity and validation of findings:

1. Theoretical Domains Framework (TDF)²¹– to explain HCPs’ views on why patients are adherent or non-adherent (Figure 2).
2. COM-B model²²– to analyze HCPs’ own behavior in supporting adherence, focusing on capability, opportunity, and motivation (Figure 2).
3. Theory of Planned Behavior (TPB)²³– to explain patients’ adherence and non-adherence behaviors (Figure 3).

HCPs’ Estimations of IBD Medication Adherence

This study found that HCPs’ perspectives on IBD adherence varied, with many believing that most patients were adherent. However, clinicians are known to overestimate adherence, often overlooking low or non-adherence,⁵ which can worsen disease control, increase flares, and escalate healthcare costs.⁸ Such assumptions, that patients will follow advice, may themselves act as barriers to effective adherence support.

Identifying non-adherent patients remains challenging in the absence of standardized measures.²⁵ Validated tools, such as the Visual Analogue Scale (VAS) and the Morisky Medication Adherence Scale-8 (MMAS), offer practical ways of quantifying adherence and exploring underlying reasons for non-adherence.^26–28 Since self-reports frequently overestimate adherence,^12,29 additional measures, including TDM, provide valuable complementary insights. HCPs’ inaccurate prediction of non-adherence in IBD may stem from not routinely asking about medication use, often assuming adherence by default. Some clinicians described “leaving patients to it”, particularly within PIFU systems, where patients are expected to proactively seek care. While PIFU can empower patients,³⁰ reducing both service pressure and carbon footprint of care,³¹ it can also leave patients feeling abandoned, increasing risk of disengagement. Patients may assume they no longer require treatment, with non-adherence going unrecognized. Previous research shows that patients rarely volunteer information about non-adherence, often describing themselves as “naughty” for not taking treatment.¹⁹ Indeed, more than one-third of non-adherent patients under-report or conceal the extent of missed medication.¹² To mitigate these risks, patients on PIFU should be carefully assessed for their likelihood of non-adherence, and HCPs must be reminded that adherence typically declines over time.³² Routine, systematic screening for adherence at every clinical contact, rather than reliance on subjective judgment, is therefore critical.

HCPs’ Perspectives as to Why Patients Adhere to Their IBD Medication

HCPs generally perceived adherent patients as those who were motivated, believed in the value of treatment, and were offered choice. This sense of autonomy was seen to increase acceptance of medication, which has been shown to improve adherence in IBD.³³ The concept of “getting patients to buy-in” to take medication resonates with the TPB,²³ which predicts that adherence is influenced by intention (motivation) and perceived behavioral control. Whether medication choice is offered is a pivotal moment, as it facilitates patients’ sense of control and enhances adherence likelihood (Figure 3).

Sustained adherence was thought to be most likely when treatment was initiated at diagnosis, was compatible with daily routines, with manageable side-effects or administration discomfort. Also, when medication was perceived as effective, accessible, and affordable. Patients have also highlighted the importance of flexible, practical regimens and understanding the necessity of treatment.¹⁹ Both HCPs and patients have identified personalized, empathic, and non-judgmental care as central to adherence. While most HCPs believed they provided such care, patients have frequently reported a lack of personalization and expressed low satisfaction.¹⁹ This reflects evidence that patient-centered approaches are inconsistently applied in practice.³⁴ Effective adherence support requires open, tailored dialogue that addresses individual barriers,²⁶ rather than a “one size fits all” approach, and must take account of the whole patient.

Notably, HCPs and patients diverge in their views on the influence of diagnostic experiences. HCPs often felt that more challenging diagnostic journeys promoted adherence, whereas many patients disagree. Instead, patients have described avoiding medication when unwell, when experiencing side-effects, or when struggling with large tablets, particularly during flares.¹⁹ These barriers were often unrecognized by HCPs, who assumed oral medication became “second nature”. This gap reflects a broader trend of HCPs underestimating the impact of symptoms and patient priorities.¹² As the patient–clinician relationship is considered the most important determinant of adherence,⁹ strengthening this through direct, non-judgmental communication may help close perception gaps and reduce non-adherence.³⁵

HCPs’ Perspective on Why Patients Do Not Adhere to Their IBD Medication

HCPs identified certain sub-groups as being at greater risk of non-adherence, including younger individuals, men, those who were single or lacked social support and, in some cases, older adults. These perceptions are supported by recent reviews reporting young age, male sex, and single status as common risk factors for non-adherence.²⁶ A recurring concern among HCPs was the influence of others on patients’ adherence behaviors. Younger patients particularly, were thought to be strongly shaped by family, friends, or online peers. Within the TPB²³ and TDF²¹ frameworks, these reflect subjective norms²³ or social influences,²¹ which can discourage adherence in chronic conditions when external advice conflicts with medical recommendations³⁶ (Figures 2 and 3). In response, HCPs and prior research,^19,37 have highlighted the value of peer support and patient groups (“patient meets”) in fostering adherence. Shared experiences were often perceived as more persuasive than HCP advice, helping to normalize IBD and reduce feelings of isolation.¹⁹ Evidence indicates that peer support can improve adherence cost-effectively across chronic conditions,³⁸ with emerging but limited data in IBD, primarily among younger patients.³⁹ Further research is needed to establish its effectiveness in adults with IBD.

Despite recognizing strategies to enhance adherence, many HCPs expressed skepticism that some patients could ever be supported effectively, likening it to the adage: “You can lead a horse to water, but you can’t make them drink”. This contrasts with earlier findings where 96% of interviewed clinicians believed non-adherence could be addressed.⁶ Supporting autonomy, incorporating patient preferences, and adopting collaborative approaches were nonetheless regarded as critical to improving adherence, aligning with previous research and patient perspectives.^6,12,19,35

HCPs reported efforts to communicate using lay language, yet patients have often felt under-informed and described needing to seek information independently.¹⁹ According to World Health Organization prescribing guidelines,⁴⁰ HCPs should ensure patients initiating treatment receive clear, accessible information and opportunities to ask questions, raise concerns, and access recommended resources.

In practice, HCPs frequently suggested interactive electronic interventions, such as reminders, calendars, and mobile apps with tailored features. Tools offering bi-directional communication between patients and clinicians and integrating with healthcare systems were considered especially valuable. Evidence supports the use of patient-centered digital technologies to improve adherence in IBD,²⁶ though HCPs cautioned that interventions must consider patients’ differing needs, preferences, and digital literacy.

Challenges to Supporting Medication Adherence

The TDF²¹ and COM-B²² models provide useful frameworks for understanding the barriers HCPs face in supporting adherence, whether arising from the realities of everyday practice or adherence-specific challenges.

Time pressures, workload, and competing priorities were the most frequently cited barriers, also recognized by people with IBD.¹⁹ Structured consultations supported by validated questionnaires could help overcome these limitations. This could enhance patients’ capability whilst offering HCPs opportunities to systematically address adherence,²⁹ aligning with COM-B.²² For example, the DIALOG tool in mental health has shown how structured patient responses can effectively guide consultations.⁴¹

Financial barriers were also acknowledged. Some HCPs felt that prescription charges may deter adherence, a view echoed by patients.¹⁹ This aligns with the TDF²¹ and the domain of requiring resources to take medications as prescribed (Figure 2). Evidence suggests that people living in socially deprived areas are more likely to be non-adherent due to cost, facing a five-fold higher risk of disease relapse.⁴²

Service-level barriers were prominent, with both HCPs and patients reporting concerns about home-care services. Delays, errors, and avoidable harm have been highlighted in a recent UK parliamentary review, which called for greater transparency, accountability, and reform.⁴³ Fragmentation of care due to shared-care arrangements and limited psychological support further hindered adherence monitoring and consistency. While many HCPs acknowledged responsibility for supporting adherence, some research suggests that non-adherence is perceived as “everybody’s problem, but nobody’s responsibility”.²⁹ This can be linked to the TDF²¹ domain of professional role and identity as an impact on HCPs’ behavior. In practice, adherence support is often deprioritised.¹⁰ Interviewed HCPs emphasized that adherence support should be a shared responsibility across the MDT, ensuring holistic and collaborative care. Pharmacy-led interventions offer promise, balancing structured workflows, patient engagement, and effective adherence strategies.³⁴

Another key challenge was the difficulty addressing non-adherence directly. HCPs reported avoiding conversations that could become awkward or confrontational, and all noted a lack of training in this area. Similar findings in previous research show that clinicians’ knowledge of IBD self-management is suboptimal⁴⁴ and that HCP training on adherence support is limited.³⁴ Within the TDF²¹ and COM-B²² frameworks, these barriers reflect gaps in knowledge, skills, and perceived capability. Improving training for doctors, pharmacists and other MDT members in patient-centered, concordant approaches could strengthen their capability and opportunity to provide effective support.³⁴ HCPs also highlighted the importance of staying updated with evidence-based research, consistent with earlier findings,¹⁰ aligning with knowledge and skills development in the TDF domains.^21,22

Adherence support was seen as particularly crucial at diagnosis. HCPs recommended open-door policies, helplines, monitoring, and proactive outreach at this stage, recognizing that newly diagnosed patients often have limited understanding of IBD or the importance of long-term medication use. Early intervention is essential, as patients may struggle with denial or resistance to treatment in response to the psychological impact of a chronic disease.^26,45,46 Evidence confirms that addressing barriers during this critical period improves both initial and sustained adherence.¹¹

Strengths and Limitations

This study systematically explored barriers and facilitators to IBD medication adherence from HCPs’ perspectives. Online, charity-led recruitment enabled participation across a range of professions and clinical experience. Virtual interviews enhanced accessibility and ensured consistency through a single interviewer. Application of established frameworks, including the TDF²¹ and COM-B,²² strengthened analysis by linking HCP beliefs and behaviors to capability, opportunity, and motivation. This approach supported interpretation and development of practical recommendations for targeted adherence interventions.

Limitations include potential self-selection bias, as those interested in adherence may have been more likely to participate, and reliance on single timepoint interviews, could be affected by recall bias. Longitudinal qualitative research may better capture how adherence support evolves in practice.

While the TDF²¹ is widely used, it lacks formal guidance⁴⁷ and is more commonly applied prospectively than retrospectively.⁴⁸ Developing clearer, adaptable guidelines for different settings and populations would broaden the framework’s utility.⁴⁹

The TPB²³ also has limitations; its linear structure does not fully capture the dynamic nature of adherence, where intention does not always translate into behavior, highlighting an intention–behavior gap.⁵⁰

Conclusions

HCPs recognized multiple factors influencing IBD medication adherence and are well-positioned to support patients through compassionate, tailored, and holistic healthcare. Clear, accessible information and guidance can encourage patients’ involvement in their care.

Barriers to adherence support span patient, treatments, healthcare systems, and HCP practices. Acknowledging the influence of their own behaviors and practice limitations is an important step for HCPs in optimizing adherence.

At service-level regular training, auditing, peer review, policy development and multidisciplinary collaboration, together with integration of adherence monitoring in routine care are essential to prioritize adherence and support better outcomes in IBD.