Barriers to GH therapy adherence across age groups – the role of digital support tools
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- Welcome to the podcast entitled "Bridging GHD gaps: From complexity to continuity" from Medthority for Healthcare Providers. My name is Brad Miller and I'm a pediatric endocrinologist at the University of Minnesota Medical School and M Health Fairview Masonic Children's Hospital. Joining me today is Paul Dimitri and would love to get the discussions started.
- Thanks very much, Brad. So my name is Paul Dmitri. I'm professor of Child Health Technology at the University of Sheffield in the UK and I work as a pediatric endocrinologist at Sheffield Children's Hospital.
- Well, I'd like to start the conversation today to talk about the primary barriers to growth hormone therapy adherence across different age groups, and get your perspectives on the challenges at different ages.
- Yeah, thanks very much for the question. It's an interesting one, and it's fair to say that children and adolescents miss growth hormone doses for reasons that are far more developmental and behavioral than being deliberate. What you tend to find in the older group is routine shift with school transitions, social activities, increasing autonomy, adherence naturally becomes harder. Younger children depend entirely on adults to structure their health behaviors, whilst adolescents often test boundaries. They prioritize peer identity, spontaneity and privacy over medical routines. They've got emotional factors, things like needle anxiety, treatment fatigue, or a desire to feel normal also play a fundamental role, and these developmental dynamics mean that missed doses are really a sign of refusal. They're a predictable outcome of growing up and they highlight the need for age-responsive support and technology that adapts to developmental change. So, for the younger children, adherence is shaped almost entirely by the ecosystem around them. So their caregivers, they juggle work, childcare for other siblings, household pressures and unpredictable daily routines, all of which have the potential to influence whether injections happen consistently or happen randomly, and, you know, for those of us that are parents, that evening chaos, shared caregiving responsibilities or a parent who might work late, can easily disrupt dosing. And then there are other factors that play a role as well. So there are families that experience internal or external stress, they have low health literacy or potentially if they're using digital tools, low digital literacy, or they have limited support. They face even greater challenges, and so in this context, adherence becomes a family behavior, not an individual one. So tools that provide predictable routines, something that gives the caregiver a prompt, a digital tracking tool, that can transform continuity of care by essentially reducing the cognitive load and helping families maintain stability even when life is busy or unpredictable.
- Just as a follow up to that, do you think there are specific barriers because it's growth hormone versus other things that might be changing the dynamic?
- Yeah, it's an interesting question. I think it's possibly not necessarily unique to growth hormone, but I would suspect growth hormone falls into the challenge of taking a medication long term, so you have a medication that for some children, it's prescribed at a very early age and this is something that is potentially through the course of their, right their way through to their adolescence and even beyond that into adulthood. So both those internal factors and those external or extraneous factors then will challenge them at different points in their life as they grow up, as they develop autonomy. Then there's different factors challenge both those individuals and their families in different ways.
- So how can digital tools be used to address these age-specific adherence challenges?
- Yeah, I think going back to those age-specific adherence challenges, they can smooth out, the digital tools can smooth out some of those adherence challenges by meeting children, adolescents, and young adults exactly where they are developmentally. So for younger children, and they're of course dependent on their families, the most effective features of those that will reduce that cognitive load and meet routines for those families and their children more predictable. So it's things within the digital tools, so well-timed reminders, visual countdowns, and then for the children themselves, character-based prompts that help them anticipate injections and reduce anxiety, but also eases the burden on busy caregivers. Then you've got gamification within digital tools, and I think this is fundamental, particularly for the young children. So, you know, things that have been used in the mainstream gaming world, like streaks, badges, progressive journeys, that can turn adherence into a shared family activity and more fun for the child rather than a nightly negotiation, which can occur with growth hormone therapy given that it's injectable. And then there's interactive content, so short animations, story-based explanations that will help children and young people understand and normalize treatment, especially when you pair that with reward-based routines that reinforce that consistency. And then when children move into adolescence and early adult tools, adulthood, sorry, digital tools shift from supporting routines really then to supporting autonomy. So adolescents will benefit from the platforms that will offer personalized dashboard, self-management modules and private spaces to track symptoms, mood, or progress, so these are features or tools that reinforce ownership rather than dependence. And so, then as they move into adulthood, these digital platforms will then be used to scaffold the transition to adult care, by providing structured transition pathways and may give them tools such as appointment management, secure messaging that encourages them to take the lead but still while feeling supported. The young adults navigating independence, tools that integrate medication reminders with their academic work, if they're at university, their work or their social challenges alongside a decision-support prompt will help them to maintain continuity as their life becomes more complex, and it almost certainly will become more complex as they move into adulthood. So I think collectively, at those different age groups, children, adolescents moving into becoming young people and young adults, these digital systems will involve with the child. It supports families early on, it empowers the adolescents and then enables that confident independence as they move into adulthood.
- Great, so what types of digital technologies are currently being used to support adherence in growth hormone therapy?
- So, I think it's fair to say that digital adherence support in growth hormone therapy has really evolved over time and it's involving into what's become a powerful ecosystem of connected injection devices that are aligned with mobile apps and clinical dashboards, and each of them is essentially designed to reduce missed doses and make treatment more predictable. What the connected devices do is automatically record injections, then transmit data securely and will flag gaps in dosing patterns, giving families and clinicians a real-time view of adherence. And the mobile apps extend this offering, extend it by offering reminders and routine-building tools, dose logging, animations for younger children and progress visualizations that will help those young people understand the impact of consistency. And then clinician dashboards will bring all these data streams together. It will enable early identification of risk, it will support targeted conversations, which I think these platforms are set out to do. It really facilitates the conversations that I and others have with young people and families, and it gives that approach to proactive support rather than waiting for growth filtering to appear months later, and more challenging questions at that later date. So what these technologies are offering is clear strengths that allow us to acquire objective data, it reduces the caregiver burden and opportunities for earlier intervention and improve communication between families and clinical teams, but it is fair to say they do have some limitations as well. It's important to remember that not all families have equal digital access, so some will find apps overwhelming, they may disengage with digital systems over time, and of course, it's important to remember that connected devices will only work if data transmission is reliable and the ecosystem is easy for those families and young people to use. And then when you look at the clinical side, clinicians may face dashboard fatigue if systems are poorly integrated and that there's disengagement from adolescents and families where there's little information for those clinicians to use. So I think, when we think about the next generation of solutions, that's gonna have to address these gaps. It's gonna have to move towards personalized age-responsive digital support, but also to make sure there's seamless interoperability and the tools will adapt to the realities of family life and developmental changes so there's sustained engagement on both sides, from children, young people and their families, but also from healthcare professionals as well.
- You talked a little bit about this already, but how you integrate that into your own clinical practice and the routine clinical care is a key component, and so it's both directions, how the families use it and how we use it, and so how do you do that in your practice or how do you foresee doing that as things evolve?
- Yeah, it's a really important question that, because when you integrate digital adherence tools, the effective way to do it is to introduce them as part of a collaborative family-centered conversation, not as an add-on or an obligation to use them. And it's important to frame these tools as something that reduces workload for the families, rather than something that monitors them. And what that does is it helps to build trust from the outset. So it's important to demonstrate that the Apple device during the consultation, it's important to demonstrate it so that you're setting up together and agree how reminders and notifications will be used to support smoother adoption. So essentially, for younger children where caregivers need confidence in how a tool fits into daily routines and for adults who will respond better when digital tools are positioned to supporting independence, it's really important to engender that ownership rather than a mode of surveillance. So, in practical terms, you need clear, simple onboarding, ideally supported by healthcare professionals, not just one individual, but a team. So for example, nursing colleagues as well to ensure that families leave the clinic knowing exactly what the tool does, how it benefits them, and who they can contact if they have some problems as they start to utilize that tool, and then once that tool is in use, the digital data can enrich follow-up discussions, and what it does is shift the focus from guesswork of adherence to objective in real-time insight. And what clinicians can do is use that, those adherence trends to guide counseling, to explore barriers to adherence and tailor intervention. And what that might mean is adjusting routines, addressing emotional factors or planning additional support. And again, that's done by both the negotiation and also by collaboration with the family and the young people. Not a process by which we push them because we say we're watching them. And then there's using it in practical terms from a pharmacist perspective. So pharmacists could link that adherence data to prescription management and also if the teams have psychologists, they can interpret behavioral trends that signal stress or treatment fatigue, and intervene when appropriate. So when that whole multidisciplinary team engages with the same digital ecosystem, what it creates is a consistent message that the tool is part of routine care. It's not an optional extra, but it will strengthen continuity across appointments and all the life stages that I spoke about earlier.
- A key question about integration for clinicians is how do different systems work with your healthcare system and information platform, and what barriers do you see there?
- Yeah, so integration is really important, and this is one of the most challenging, but in terms of those digital tools, that has to be system-wide interoperability. These digital tools can't be set up to operate with one system, because there are multiple different digital platforms that exist within trust, through, you know, different electronic patient records as an example, and even in the UK we have multiple different electronic patient records, so that integration of digital tools with systems where you require the transfer of information is fundamental. What exists at the moment is actually a digital tool that is independent of that, and so it doesn't require that intraoperability with clinical systems, so that it can be used system-wide without creating that fragmentation. But what's important is also the operability with uploading information through either a mobile network or through the internet, and so there needs to be both a credible and sustainable means of uploading information so that we don't essentially push people away from using the digital tools 'cause they can't transfer the information and transmit it in a way that's usable.
- Are there any emerging digital innovations that you think are going to change how people adhere or improve the adherence better?
- Yeah, I think it's fair to say, this is a rapidly-evolving field, so I think these digital adherence tools for growth hormone therapy are moving beyond, or will move beyond simple dose line towards predictive personalized and fully-integrated ecosystems. There's gonna be AI-driven analytics and they'll begin to identify early behavioral patterns that precede non-adherence, enabling proactive intervention rather than retrospective correction. Then there's digital phenotyping using passive data that we can gather environmentally, sleep, activity or mood that may help clinicians understand when life-stage pressures or emotional factors are affecting their routines. And then there's the opportunity for virtual coaching, adaptive reminders, conversational agents which are being explored to provide age-specific support while augmented-reality explainers and interactive-learning tools may help younger children understand treatment in more engaging ways. And as these innovations mature, evidence and validation is going to be fundamental. This includes accuracy, safety, usability and equity. That has to be demonstrated before integrating these tools into clinical pathways, and there are also regulatory expectations for artificial intelligence in relation to transparency, data governance and how these tools can be adopted. So, in terms of the next frontier, there's going to be, I think, a seamless integration in tools across an entire care ecosystem, and what that gives us is the opportunity to link patient-facing digital tools with electronic health records, pharmacy systems, and multidisciplinary teams, whatever digital platforms they're using, so that adherence insights flow automatically to the right professionals at the right time.
- Excellent, well, I think this has been a great conversation, and I'm looking forward to hearing more as the field evolves, and excited to see some of these digital tools in action to help us partner with our patients and our care teams to help our kids, so thank you very much.
- Yeah, thanks very much.
