10 tips to improve adherence to immunosuppressive medication after kidney transplantation

ABSTRACT

Non-adherence is an issue in all chronic health conditions and the World Health Organization estimates that up to 50% of patients do not take all of their medications. The situation in kidney transplant patients is probably better, as these patients are preselected for good adherence and proactive behaviour. Nonetheless, non-adherence remains a common, significant and likely underdiagnosed problem in transplant nephrology. Not taking immunosuppressive medication as directed is strongly correlated with late acute rejection, which is often severe, leading to progressive loss of transplant function and poor outcomes overall. It is important to acknowledge that non-adherence is multifactorial and that interventions work best if clinicians understand risk factors and the causes of non-adherence in their patients. Reflex labelling of patients as non-adherent in documentation and clinic letters is unlikely to be helpful but good documentation is also important. It is also important to be aware of the phases of adherence and to have some knowledge of how to measure non-adherence. Dose simplification may help in some patients and technology can be employed to improve adherence, particularly in younger and information technology–literate patients. Peer support and patient information are also important. Individual assessment is important in patients who have lost a previous transplant due to non-adherence. We also emphasize the importance of a multidisciplinary approach and the relative paucity of robust data in this area. Based on the limited evidence and our individual and departmental experience, our 10 tips aim to provide clinicians with a toolbox of evidence-based interventions to address this important issue in daily clinical practice. We also provide a list of suggestions for institutions to address this important issue at departmental and institutional levels and suggest future research.

INTRODUCTION

Successful kidney transplantation requires adherence to medication and non-adherence remains a challenge for nephrologists and their teams [1]. Non-adherence is linked to rejection, allograft dysfunction and graft loss [2]. Despite this, medication non-adherence remains common, with a prevalence of up to 30% [3]. More subtle forms of non-adherence may be very prevalent and increased variability of tacrolimus levels have been linked to rejection and polyomavirus infection [4]. The field is also hampered by the lack of consensus as to what constitutes adherence [5]. It is also the case that asking for total adherence is perhaps unrealistic. As an example, many transplant patients will occasionally take doses late and most transplant physicians do not view this as non-adherence [6]. Non-adherence in transplantation can be unintentional or intentional, but it is usually amenable to intervention [7]. It is also important to understand that non-adherence is often part of coping strategies that have developed to overcome medication taking [8]. A multidisciplinary approach is required for most patients, with education, counselling, simplification of dosing and the use of technology [1]. Care providers are typically very aware of non-adherence as an issue in transplantation but often struggle when it comes to a practical approach. In addition, there is a lack of robust evidence whereby there are data on the prevalence of non-adherence and on the underlying factors and effects on transplant outcomes. However, data on interventions are often less robust. Here, we provide 10 practical tips to address non-adherence after kidney transplantation. Our suggestions are based on the available data and recommendations, but also very much reflect our own personal and departmental experience with this topic. Our target audience includes early-career transplant nephrologists and their wider teams in transplant centres.

Tip 1: Consider the causes of and risk factors for non-adherence and identify factors that are amenable to intervention

It is important to acknowledge the root causes of non-adherence as defined by the World Health Organization. These include social and economic factors, the healthcare team or system, the characteristics of the disease, disease therapies and patient-related factors with psychological and behavioural elements.

Psychological factors [9] can include a lack of understanding of the medication, distress due to symptom burden and comorbid conditions, the presence of cognitive impairment and psychiatric disorders. Adolescence is often a time when patients are vulnerable [10], particularly during the transition from paediatric clinics [11, 12].

Behavioural attitudes towards medication non-adherence are complex and include variables such as dose timing or sporadic usage, a drug holiday and dosage alteration. Non-adherence early after transplantation is associated with a poor outcome [13]. Mild issues with timing are more common and patients often wonder how much deviation from the 12-h interval is acceptable or what to do if they have forgotten a dose. In some cases, consistency may be more important than the exact 12-h rule and an individual approach is recommended.

Social factors are important, particularly for younger patients. These include socio-economic status, education level, barriers to accessing care and attending clinics [14]. Poor social support is also common in patients with non-adherence [3] and, when present, remains difficult to address. Younger patients may also miss or delay medications when, for example, going out with friends, since taking pills in front of others may be embarrassing, leading to impaired self-image [15]. Table 1 provides a list of causes of and risk factors for non-adherence. Physicians should see this as a tool for differential diagnoses, identifying patients at risk and for finding factors that are amenable to intervention.

Table 1:

Causes of and risk factors for non-adherence to medication and suggested interventions.

Cause/risk factor	Suggested intervention
Psychosocial	Input from psychology services, signposting to local peer support and addressing anxieties. Referral to a social worker for issues regarding financial difficulties. Signposting to relevant support organizations through the National Kidney Foundation, Transplant Recipients International Organization or Kidney Care UK.
Behavioural	Offer counselling and allied healthcare professional involvement (psychology, social worker and a transplant clinical nurse specialist). Ascertain difficulties in medication access. Determine social settings where medication taking may be challenging and how this can be practically managed.
Treatment related	Once-daily medication regimens, review by the renal transplant pharmacist and patient involvement in the analysis of therapeutic drug level monitoring to allow a less paternalistic, more patient-centred approach. Address concerns regarding missed doses and the 12-h interval.
Healthcare related	Reduce the clinic burden using technology, e.g. phone or video clinics. Reduce the pill burden by simplified regimens, e.g. once-daily medications. Consider the use of home-based technologies such as the tacrolimus spot test. Ensure clinic letters use clear and unambiguous language, such as take one morning and night, and refrain from terms such as patient non-adherence.

Tip 2: Document non-adherence but avoid the reflex of labelling of patients as non-adherent

The term compliance was historically used to describe a patient's unwillingness to take their prescribed medication. This term evolved into non-adherence to offer a less paternalistic approach. It is important to be factually correct and truthful in documenting previous non-adherence, but blanket labelling of patients as non-adherent, for example, in a clinic letter, should be considered carefully.

Labelling patients can be seen as projecting blame onto an individual without an understanding of the cause [16]. Indiscriminate terminology fails to capture the social and behavioural determinants of health, such as receiving insufficient medical information, an overwhelming number of medications, a lack of social support and financial resource constraints, among others [16]. The language used in the patient's medical record can also introduce bias for subsequent healthcare providers.

In addition, using these ‘labels’ can suggest that the patient's behaviour is intentional, and it has been suggested to abandon the terms non-compliance and non-adherence entirely [17]. Using the term non-adherence as a diagnosis may also give the impression that it is permanent and that the patient is expected to remain non-adherent. This can lead to a vicious circle of stigma, non-engagement by patients and poor outcomes. Stigma can also be internalized by patients and lead to self-stigma and low self-esteem, which is well described in other contexts [18, 19]. One should also use caution when diagnosing non-adherence simply based on previous low levels of immunosuppressive medication, as this can be multifactorial and provider error is also possible. It is also the case that there is significant heterogeneity in patients at risk of non-adherence [20] and using one label for all is unlikely to do justice to this heterogeneity.

Instead of using labels, physicians and their teams should remain aware of patients with a history of previous non-adherence to signpost and highlight the need for additional support. Nurse specialists and pharmacy colleagues are also well positioned to spend time with patients at risk and offer individualized help.

Tip 3: Recognize the phases of medication adherence and identify opportunities for education and intervention

Medication adherence involves three key phases: initiation, implementation and long-term persistence [21]. For healthcare providers working with transplant patients, understanding and supporting adherence across these phases is key to success.

Initiation phase

This phase begins when treatment is first prescribed, often initiated in-hospital during the perioperative phase. During this time, patients are easily available in a ward environment and tend to be more receptive and amenable to a discussion around the long-term requirements of their transplant, making it ideal for healthcare providers to discuss the importance of a medication routine. However, patients are also introduced to complex immunosuppressive regimens and must absorb a large volume of new information. Practical strategies here might include structured medication education sessions before discharge, using visual aids, simplified medication schedules and involving family members or caregivers early in the process. Care providers should help patients establish a medication-taking habit by linking it to a daily activity, such as mealtimes or other regular habits [22]. It may be helpful to identify potential barriers such as polypharmacy or limited access to medication and ensure that patients understand the benefits of consistent immunosuppressive therapy to reinforce their motivation.

Implementation phase

This occurs once the patient returns home and is expected to follow the prescribed regimen independently. This phase is particularly vulnerable to errors due to polypharmacy and complex dosing schedules. Clinicians can support implementation by conducting early and frequent follow-up visits (in-person or virtual), using tools like dosette boxes or digital tools and collaborating with pharmacists to simplify regimens where possible. Routine medication reviews can help identify early signs of non-adherence or regimen confusion. Discrepancies between medication regimes is a common cause of confusion, and it is important to synchronize records of the transplant team, patient and primary care. Continuity of care is particularly important and constant or unnecessary changes can confuse patients further and increase the risk of rejection or toxicity. Nephrologists and their teams should assess adherence on a regular basis, discuss side effects and adjust care plans to minimize variability in drug exposure.

Persistence phase

This phase involves the patient's long-term continuation of treatment, often for life. Over time, patients may experience ‘treatment fatigue’, lose motivation or face life events that disrupt routines. Separation from a life partner, redundancy and bereavement are often times of increased vulnerability. During such times, care providers should monitor adherence patterns, maintain an open dialogue about the patient's evolving challenges and beliefs and offer support. Support groups, peer mentoring programs and periodic re-education sessions can help reinforce the importance of sustained adherence. Clinicians should monitor patients over time and address barriers to sustained adherence through a multidisciplinary approach, routine check-ins and encouragement to continue their immunosuppressive therapy.

Tip 4: Measure adherence to immunosuppressive medication and treat adherence as an additional vital sign in all clinical encounters

Monitoring adherence to immunosuppressive drugs is key and several approaches are possible [1]:

Self-report medication prescription or refill data

Self-reporting should be a routine part of every clinical encounter, fostering open, non-judgmental discussions about adherence. While self-reports provide valuable qualitative insights, they are limited for precise, quantitative assessment and are not directly linked to tacrolimus level interpretation. Where available, refill records are helpful for identifying adherence gaps over time. However, their utility may be limited by factors such as hospital admissions, frequent dose adjustments and availability of records.

Tacrolimus levels and variability

This approach [23, 24] requires at least 3 months of data for meaningful interpretation due to its sporadic nature. It is a limited measure of exposure that can be challenging to interpret, as it is associated with non-adherence, pharmacokinetic variability and drug interactions. Combining it with electronic monitoring can enhance accuracy. Emerging options for home blood sampling [25, 26] may increase sampling frequency, but remain limited as stand-alone measures and are also costly.

Electronic monitoring

Direct observation of medication probably represents the gold standard for monitoring but is impractical in this context. Electronic monitoring [10] provides precise data on medication intake patterns and can identify adherence issues early, although it can be manipulated if a patient is determined to do so. It is especially effective when combined with tacrolimus levels, although its implementation outside research settings remains challenging. Using a combination of these methods, when feasible, gives a more comprehensive view of adherence, allowing for timely interventions and personalized care adjustments.

Neuberger et al. [7] first suggested treating adherence as an additional vital sign in all transplant patients. In practical terms, this involves talking to transplant patients about adherence in all clinical encounters and asking them about any problems with remembering their medication. It could also be considered to include a section on adherence in transplant clinic letter templates and similar proformas to prompt all healthcare providers to take this ‘vital sign’ during clinical encounters.

Tip 5: Consider dose simplification and avoid unnecessary polypharmacy

Complicated drug regimens can contribute to non-adherence [27, 28] and the number of doses per day is inversely related to adherence in some studies [29]. Many clinicians also feel that evening doses of immunosuppression are more vulnerable than those taken in the morning, although robust evidence is lacking.

There is good evidence from other fields, such as human immunodeficiency virus medicine and diabetes care, that interventions to simplify medicine regimens have positive impacts on medication adherence [30, 31]. It is worth noting however that clinical outcomes are not consistently enhanced by medicine regimen simplification [31], yet patients desire therapies with reduced frequencies [32]. Overall, there are three different strategies to reduce the complexity of medication regimens: fixed-dose combinations, once-daily dosing and a combined approach. Unfortunately, fixed-dose combinations are not currently available to transplant recipients.

A study by Oh et al. [33] demonstrated that swapping kidney transplant recipients to once-daily immunosuppressive regimens significantly improved adherence, with no additional risks of efficacy failure or adverse outcomes. For patients struggling with adherence, a once-daily regimen can be considered, although missing a once-daily dose will be more impactful than missing one of two daily doses, and it is important to acknowledge the concept of drug ‘forgiveness’: a ‘forgiving’ drug maintains its levels and effect despite lapses in drug adherence [34]. Dai et al. [35] suggested a complex interplay of adherence and forgiveness when comparing immediate and extended-release tacrolimus. Conversion of a twice-daily tacrolimus-based regimen to once daily also requires good patient education to avoid errors [36]. A variety of once-daily tacrolimus preparations are available, such as Advagraf, Envarsus and Dailiport. The total daily dose should be swapped to a once-daily regimen, although some patients require dose adjustment. Unfortunately, many patients will also be taking some form of mycophenolate, which is not currently available as a once-daily formulation, although conversion to azathioprine can be considered.

Case vignette

A 54-year-old male patient with immunoglobulin A nephropathy underwent a first (pre-emptive) deceased donor transplantation in September 2023. He was on tacrolimus and mycophenolate mofetil. In mid-2024, transplant function was good, but his tacrolimus levels were variable despite attempts to explain the importance of taking the immunosuppressive medication as prescribed. It was then discovered that the patient sometimes forgot the evening dose of tacrolimus because he was often away from home at the time when the evening dose was due (e.g. due to a late commute home from work). Conversion to once-daily tacrolimus was done in December 2024 and his tacrolimus levels have been on target since then (Fig. 1), with stable transplant function.

Figure 1:

Case vignette: tacrolimus levels before and after conversion to once-daily tacrolimus in a kidney transplant patient.

Polypharmacy is common in transplants, especially early on after transplantation, and complex medication regimes can be challenging for patients. Clinicians should review all medications at each encounter, particularly in the early months after transplantation, and consider reducing or stopping unnecessary medications, such as bicarbonate supplements, vitamin D analogues and others, where appropriate.

Tip 6: Consider the use of technology and artificial intelligence (AI)

A pill organizer box (dosette) can be viewed as a simple technology and patients can prepare medications for a week ahead themselves or with help from others if required. Patients can be advised to keep the box in a place linked to daily habits (e.g. morning medicines next to the toothbrush or in a designated spot in the kitchen to be visible when preparing breakfast). More sophisticated digital dosette boxes, such as Pivotell, Lifemax and TabTime feature reminders and dispense the dose at the required time. They can be complicated to use and may not be suitable for all patients. Community pharmacies could be involved in issuing blister packs to patients, and some pharmacies will send electronic reminders when scripts are due for refill to prevent running out. In that scenario, dialogue with the pharmacy may help assess non-attendance based on how frequently the pharmacy has to send reminders or prompt patients. However, this setup can be problematic in some countries, such as the UK and Australia, where regulation stipulates that immunosuppressive medication is only dispensed by hospital pharmacies.

Reminders can help patients to remember their medicines, and these can be facilitated through a smartphone or watch and have the advantage of working regardless of where the patient is or what he/she is doing [37]. However, some people get used to the reminders and subsequently end up ignoring them. Moreover, the dose may have already been taken or the patient may not be close enough to hear or see the notification. The same limitations apply to reminders via text message [38].

More advanced apps are also available, although few have been tested in trials. Popular apps include Medisafe, Transplant Hero and the medication application on the Apple Watch. Most alert the patient when medicine dosages are due, some allow friends or family to be notified if doses are missed and others link with care providers. One study [39] found that the use of these apps declined over time, with one study reporting only 1% engagement at 12 months. Another study [40] found low adherence in patients using a smartwatch app.

It is likely that AI will play a major role in this area and it will be crucially important that patients and healthcare professionals are involved in this development. For example, AI could use tacrolimus level variability, presence or absence of previous rejection and other factors. Yismaw et al. [41] reviewed the use of AI to identify patients with type 2 diabetes at risk of non-adherence. The authors emphasize the promise of AI in this field but also acknowledge issues such as population diversity. So far, only a handful of studies have used AI to predict non-adherence in transplantation and a number of barriers in the use of AI have been described [42, 43]. Zhu et al. [44] used data from 1191 kidney transplant patients in China to build such a model based on 10 items that included factors such as family support, marital status and use of a dosette box after transplantation.

Tip 7: Offer peer support

Peer support groups are a valuable resource for helping kidney transplant patients improve medication adherence. Transplant nephrologists can encourage patients to engage with these groups, as they provide a supportive community where individuals can share experiences, challenges and strategies related to managing complex medication regimens [45]. Peer support groups, whether in-person, via the telephone or online, offer a unique platform for patients to learn from others who truly understand the journey, as they have navigated similar challenges firsthand.

A key benefit of peer support is the emotional reassurance it provides. Many transplant patients struggle with the daily demands of adherence and may feel isolated or overwhelmed. Hearing success stories, as well as practical tips from peers who have developed effective medication routines, can be immensely reassuring [46]. Additionally, discussing common side effects and their impact on daily life can help patients feel more confident in managing their regimen and less alone in their experiences.

Another advantage of peer support groups is the motivational boost they provide. Knowing that others have faced, and overcome, the same obstacles can encourage patients to stay committed to their treatment plan. Peer group discussions often highlight the importance of strict adherence to avoid rejection, which can help reinforce the message from healthcare providers in a way that feels more relatable and achievable [47]. One good example is the fact that younger patients often feel embarrassed when taking immunosuppressive medication in public, be it in school, at work, at university or in social gatherings. Peer support can help normalize this, give younger patients confidence and provide practical tips such as using a small and less obvious dosette box. Peer support can also help patients have the confidence to be honest with care providers about lapses in adherence.

Transplant nephrologists can connect patients with local support groups, online communities or national organizations with peer programs, such as the National Kidney Foundation (NKF) in the USA or Transplant Recipients International Organization. Regularly attending these groups can provide patients with consistent support, practical advice and accountability, ultimately leading to improved adherence. However, some of these support mechanisms are only accessible nationally, such as NKF support, which is only available to residents of the USA and Puerto Rico.

Incorporating peer support into a patient's care plan is a powerful way to supplement medical guidance, helping transplant patients feel empowered, informed and motivated to manage their medications effectively and improve their long-term health outcomes.

Tip 8: Develop a portfolio of patient information

Understanding the importance of immunosuppressive medications can feel daunting but is key to improving medication adherence. Educational materials tailored to kidney transplant patients are essential, as they break down complex information into easy-to-follow formats (Fig. 2) [48]. These need to be accessible to all levels of literacy as well as available in multiple languages so patients can use and share with family, friends and caregivers to help them build long-term health habits. These materials include videos, leaflets, websites and mobile apps and patients can choose resources that suit them. Trusted websites from transplant organizations can give patients access to a wide range of resources in one place and often offer downloadable guides, educational videos and medication tracking tools.

Figure 2:

Slide from a patient information video regarding immunosuppressive medication and adherence at Lancashire Teaching Hospitals NHS Foundation Trust in the UK. In the public domain [65]. A version in Urdu is also available, in line with the most spoken language other than English in the catchment area.

Videos are particularly effective because they combine visual and auditory information, making it easier for patients to grasp complex information about immunosuppressants, dosing schedules and potential side effects. Short, focused videos can be highly engaging and are useful to revisit if patients have questions. Leaflets are another essential tool. They allow patients to review key points at their own pace and share information with caregivers. Leaflets should be visually engaging, with easy-to-understand language and infographics that illustrate daily routines and the implications of missing doses. Including reminders and contact information for additional support reinforces the message that help is available.

It is also a good idea to consider patients with special needs, such as those who are blind or have a visual impairment, not least because such patients face additional challenges in terms of adherence. We have had a very good experience with charities translating our information into Braille and audio for this purpose.

To maximize impact, materials should be reviewed periodically to ensure clarity and relevance. Clinic encounters and letters can be used for patient education as well. It may be helpful to use plain language, such as ‘take in the morning and evening’ instead of ‘twice daily’ [49]. By using a mix of educational formats, transplant nephrologists can better equip patients to manage their medications, improve adherence and ultimately enhance long-term transplant outcomes.

Tip 9: Consider your approach to patients who lost a previous transplant due to non-adherence

Non-adherence is a main cause of graft loss, particularly in adolescents [11], and it is surprising to see the lack of formal guidance for this scenario. It is also the case that graft loss due to non-adherence regularly evokes strong feelings among the wider team and also among fellow transplant patients who are adherent and among live donors. Some guidelines simply view non-adherence as a contraindication to transplantation, but in our view a blanket exclusion of these patients from a subsequent transplant is not justifiable. Instead, we suggest trying to identify causes of non-adherence with a focus on those who are amenable to intervention. Most recommendations suggest an open-minded approach aiming for insight coupled with formal psychosocial assessment and a 6-month period of assessing adherence on dialysis. During this time, attendance to dialysis, phosphate levels and blood pressure can be used as surrogate markers [50]. In practice though, this is often difficult because non-adherence is difficult to quantify. We also need to acknowledge that we lack reliable tools to predict recurrence after a subsequent transplant [50]. Being open and transparent with patients and offering support and information is key. Clinicians should set clear, transparent and achievable criteria before relisting is considered. All decisions for or against relisting should be made by a multiprofessional panel, documented in writing and shared with the patient (Fig. 3).

Figure 3:

Suggested approach to relisting for another transplant where a previous graft was lost due to non-adherence.

Tip 10: Promote a multidisciplinary approach to non-adherence and consider novel models of post-transplant care

In tackling non-adherence, it is important to involve the wider multiprofessional team [51] that, depending on availability and infrastructure, includes transplant pharmacists, nurses, psychologists and social workers. This is of particular importance in adolescent transplant patients transitioning from paediatric to adult renal care [52]. All members of the team bring different perspectives and approaches, and regular multidisciplinary meetings should be the standard where input from all team members is available. In addition, a more formal second opinion can be useful, particularly where non-adherence has been severe and long-standing. In our experience, patients may sometimes be upset or feel embarrassed to talk about this issue openly with a clinician they know well. Conversely, clinicians can have subconscious biases against patients where, for example, non-adherence has caused an additional workload. A formal second opinion from either another clinician or a member of the wider team can be used to allow a ‘fresh start’ and reassures the team and others that help has been offered and from multiple sources.

However, more research is required to understand which multidisciplinary interventions improve adherence and which do not. A recent multicentre study on adolescents after kidney transplant is a good example. In this study, a dedicated transition model with a dedicated case manager and other support was not superior to usual care [53] and the authors speculate that some non-adherent patients are less likely to engage with additional support.

A multidisciplinary approach is of particular importance in adolescent transplant patients transitioning from paediatric to adult renal care [52]. In our experience and that of others, a lack of engagement is often an issue and non-traditional and innovative models of post-transplant care should be considered. As an example, Harden et al. [54] reported good experience with moving a clinic for young transplant patients out of the hospital environment and into a student sports centre, coordinated by a youth worker. Engagement with blood tests is also often a problem and point-of care tests for use at home may offer an interesting new approach for this patient group [55]. Technology to measure serum creatinine and tacrolimus levels in capillary blood samples obtained by the patient at home is already available and can be combined with mHealth technology [56]. Urinalysis with a smartphone kit is also possible [57].

CONCLUSION

The importance of adherence has been appreciated by transplant nephrologists since the early days of clinical transplantation [58] but addressing this issue in clinical practice remains difficult. It is likely that many cases of minor or temporary non-adherence go unnoticed by healthcare providers [59] and non-adherence often first comes to light when patients present with acute rejection. When this happens, underlying causes and risk factors are not always obvious, and it is not unusual to see care providers upset when patients sustain rejection or graft loss because of non-adherence. Our 10 tips emphasize the importance of identifying causes and risk factors and of understanding the complexity of non-adherence. Institutions and transplant centres also have a role to play and we encourage them to address this issue at a departmental level (Table 2). Recurrence in subsequent transplants is difficult to predict and it is by no means universal, although some patients will require support with adherence more than once in their lifetime. It is important to acknowledge the paucity of data in this field and our 10 tips very much reflect our own experience as clinicians. Priorities for future research have been described elsewhere [20] and including interventions for medical adherence in clinical trials may be warranted [60]. Much progress has been made in the last 2 decades, but there is still a lot more to do in terms of development and future research [61] (Table 3). Implementation research is also very much needed [62]. Some have suggested that there is no permanent cure for non-adherence [63], but being aware of patient attitudes towards taking medicines [64] can help mitigate risk. In our experience, even in a busy clinic there is usually some scope and opportunity for identifying patients at risk of non-adherence and there are almost always factors that can be improved [7] to manage the situation. We hope that our 10 tips provide a toolbox of interventions (Fig. 4), especially for transplant professionals at the start of their career.

Table 2:

Suggestions for a departmental and system-wide approach to improve non-adherence.

Include screening for non-adherence in the transplant listing process.

Screen for risk factors when reviewing patients while wait-listed.

Include patient information on immunosuppression in the wait-listing process.

Offer more detailed information to patients at risk of non-adherence.

Develop patient information in different formats (leaflet, video, animation, game).

Translate patient information into different languages depending on your patient groups.

Set up multidisciplinary meetings post-transplant and include adherence issues.

Develop the multidisciplinary team and provide input from pharmacists and social workers.

Write a guideline for relisting of patients who lost a transplant due to non-adherence.

Liaise with other institutions and develop educational material together.

Teach medical students, trainees and new colleagues about non-adherence.

Table 3:

Suggestions for development and further research on non-adherence after transplantation.

Better understanding of heterogeneity among non-adherent patients and definition of subgroups, patterns, phenotypes of non-adherence after transplantation [20].

Development of core domains for interventional studies [60].

Improved understanding of patient perspectives [64].

Examination of the financial implications of non-adherence (e.g. to help fund technology or other improvements) [61].

Integration of non-adherence metrics into electronic health records (such as routine display of tacrolimus level variability and medication refill data).

Electronic health record provides a decision aid for patients flagged as being at risk (to offer additional support, earlier appointment, interaction with transplant pharmacist).

Promotion of adherence as a ‘vital sign’ [7].

Advancement of technology to detect and prevent non-adherence [61].

Development and validation of AI to predict non-adherence [44].

Universal availability of patient information on non-adherence in different formats and preferably in different languages (sharing between institutions can be beneficial).

Solutions to improve adherence for patients who are less information technology literate [40].

Figure 4:

Algorithm for a practical approach to prevent and treat medication non-adherence after transplantation. Icon templates purchased commercially from Vectorstock in March 2025.

FUNDING

None declared.

DATA AVAILABILITY STATEMENT

No new data were generated or analysed in support of this research.

CONFLICT OF INTEREST STATEMENT

B.V. is the chief executive officer and shareholder of the AARDEX group (Seraing, Belgium), a company that develops solutions to improve medication adherence. A.W. is on the editorial board of Clinical Kidney Journal and serves as Social Media Editor. B.M.H. is on the editorial board of Clinical Kidney Journal as a patient representative. The other authors declare no conflicts of interest.