Education as advocacy: bringing pathology into the care of children with leukemia

Abstract

A diagnosis of childhood leukemia is frequently accompanied by fear, confusion, and a loss of agency for children and families navigating an unfamiliar health care system. While advances in paediatric oncology have dramatically improved survival, little attention has been paid to how young patients understand their illness or how diagnostic medicine is communicated with them. Patient-centred pathology offers a novel, advocacy-oriented approach by bringing diagnostic expertise out of the laboratory and into direct conversation with patients and families. This Critical Lens describes The Cellfie Project, a Canadian, first-of-its-kind patient-centred pathology education initiative for children with leukemia. By enabling young patients to visualize and understand their own disease through guided interactions with hematopathologists, the program reframes education as an essential component of care. We argue that patient-centred pathology represents an underutilized opportunity to improve health literacy, reduce anxiety, and promote equity in paediatric care. We call on clinicians, educators, and policymakers to recognize diagnostic transparency as a core element of child- and family-centred health care.

Graphical Abstract

Graphical Abstract.

Education as advocacy: bringing pathology into the care of children with leukemia

A diagnosis of leukemia profoundly reshapes the lives of children and their families (1–3). Beyond the physical burden of disease and treatment, families are suddenly confronted with unfamiliar terminology, abstract explanations, and diagnostic processes that occur largely out of sight. In these early and vulnerable moments, fear and emotional upheaval often eclipse understanding, leaving families feeling powerless at a time when knowledge could itself be therapeutic.

Paediatric health care has long emphasized family-centred communication, shared decision-making, and trauma-informed practice (4). Yet one of the most consequential elements of a child's diagnosis, the pathology that defines it, remains largely invisible to patients and caregivers. Diagnostic medicine is typically delivered as a conclusion rather than an experience, which may limit opportunities for children and families to directly engage with the biological basis of illness. Patient-centred pathology offers one additional way to enhance understanding and participation within already robust family-centred models of paediatric care. Patient-centred pathology extends this paradigm by reimagining the pathologist's role not only as a diagnostician but also as an educator and advocate—one who can help patients and families see, understand, and contextualize disease.

Patient-centred engagement by pathologists is not without precedent. Pathology Education Clinics, in which pathologists meet directly with patients to explain diagnostic findings, have been described in adult care settings, particularly in oncology and surgical pathology (5–9). These initiatives have demonstrated improvements in patient understanding, satisfaction, and trust in the diagnostic process. However, to our knowledge, no such models have been described or implemented in paediatric care.

This absence is striking; children experience illness differently from adults, rely on developmentally appropriate explanations, and are uniquely vulnerable to fear and loss of agency during medical care. Despite paediatrics’ longstanding commitment to family-centred care, pathology, which is foundational to diagnosis and treatment, has remained conspicuously absent from patient-facing education. Paediatric oncology programs have long recognized the importance of patient and family education through multidisciplinary communication strategies, psychosocial supports, educational videos, digital applications, and anticipatory guidance surrounding diagnosis and treatment. The Cellfie Project is not intended to replace these important initiatives; rather, it extends them by bringing diagnostic pathology directly into the educational experience and making disease biology more visible and tangible for children and families. These approaches align with broader psychosocial standards in paediatric oncology care that emphasize developmentally appropriate communication, education, and family engagement (10). At IWK Health, we sought to address this gap.

The Cellfie Project: making the invisible visible

The Cellfie Project is a patient-centred pathology education initiative designed for children and youth diagnosed with leukemia. Patients aged 7 to 18 years and their caregivers are invited to meet directly with a hematopathologist following completion of induction chemotherapy for newly diagnosed acute lymphoblastic or myeloid leukemia.

During these visits, children don their own laboratory coats as honorary hematopathologists. They review images of their blood and bone marrow obtained at diagnosis and again following induction therapy when, ideally, no residual leukemia is detectable (Figure 1). These personalized “Cellfies” transform abstract discussions of disease and treatment into tangible, visual narratives of illness and recovery.

Figure 1.

A paediatric patient at IWK Health learning about his own blood cells during a patient-centred pathology education encounter. Photograph by JIVE Photographic Productions.

Through guided, age-appropriate conversation, children learn how normal hematopoietic cells function, how leukemia disrupts these processes, and how chemotherapy restores balance. Symptoms and side effects that once felt arbitrary are reframed as understandable biological consequences. Each visit concludes with a guided tour of the diagnostic laboratory, reinforcing transparency and demystifying the systems that underpin paediatric care (Figure 2).

Figure 2.

Two paediatric siblings at IWK Health participating in a patient-centred pathology education encounter during a guided laboratory tour with a senior medical laboratory technologist. Photograph by Kathleen Patterson.

Educational encounters are adapted to the child's developmental stage and emphasize age-appropriate language, visual learning, and guided discussion with caregivers present. The initiative was developed collaboratively within a paediatric environment grounded in trauma-informed and family-centred communication principles, with close integration between hematopathology and paediatric oncology teams. Importantly, this is not simply a didactic exercise, but a relational and developmental one.

Why this matters: education as a form of care

Since its launch in May 2022, more than 20 patients with leukemia and their families have participated in The Cellfie Project. Although outcomes have been primarily qualitative, the impact has been consistent and compelling. Families report improved understanding, reduced anxiety, and a deeper appreciation of the diagnostic process. Children have shared their Cellfie images with peers to explain their hospitalizations, reclaiming narrative control over a profoundly disruptive experience.

These observations may be particularly relevant in younger children, for whom concrete and visual learning experiences can be more psychologically accessible than abstract explanations of disease (11). By transforming invisible diagnostic processes into tangible and personalized experiences, patient-centred pathology may help children contextualize illness in ways that feel less frightening and more understandable.

Some have expressed interest in future careers in medicine; one famously wore their lab coat for Halloween.

These outcomes point to something deeper than satisfaction or novelty. They underscore a fundamental truth: when children understand their illness, they regain agency. For paediatric patients, whose autonomy is already constrained, this restoration of understanding is a powerful form of advocacy.

Health literacy is a recognized determinant of health outcomes (12,13), yet diagnostic education represents an underdeveloped area of paediatric patient engagement that may benefit from additional prioritization and dedicated resources. Barriers to understanding complex diagnostic information may be amplified among families facing language differences, cultural barriers, or limited familiarity with health care systems. Educational initiatives, such as patient-centred pathology, therefore require thoughtful implementation, accessibility considerations, and appropriate support resources to ensure equitable delivery.

A call to action

The Cellfie Project is not intended to replace existing psychosocial supports; rather, it complements current models of care while challenging traditional assumptions about diagnostic communication. It asks paediatric systems to reconsider who holds diagnostic knowledge, how that knowledge is shared, and whose understanding is valued.

As Canadian paediatric health care continues to move toward equity-focused, trauma-informed practice, patient-centred pathology deserves recognition as a legitimate and impactful advocacy tool. Pathologists should be supported and trained to engage directly with patients and families. Institutions should view diagnostic transparency not as an optional innovation, but as a standard component of child- and family-centred care.

Future study of patient-centred pathology initiatives should include formal qualitative and psychometric evaluation to better understand their effects on health literacy, anxiety, coping, and patient agency over time. Such work may further clarify the psychological and developmental dimensions of diagnostic transparency in paediatric care.

Encouraged by early success, the Cellfie model is now expanding to include paediatric solid tumours, benign hematologic disorders, and youth-focused care programs. Its broader message, however, extends beyond any single diagnosis: education is not ancillary to care; it is care.

For children navigating life-altering illness, understanding is not merely informational. It is empowering. It is humanizing. And it is, fundamentally, an act of advocacy.