Exploring holistic care needs in paediatric and teenage molecular radiotherapy: a parent and carer perspective

Molecular radiotherapy (MRT) for children and young people presents unique challenges distinct from other cancer treatments. It requires specialised inpatient care in paediatric settings, strict radiation safety protocols, and is typically available only at selected centres, making access uneven across regions. Despite the complexity of this treatment, there is a notable lack of research into the holistic needs of parents and caregivers of paediatric patients undergoing MRT. Understanding and addressing these needs could help enhance future care, facilitate earlier interventions, and improve care planning for both patients and their families.

A prospective, systematic assessment of holistic needs was conducted for paediatric and adolescent patients undergoing their first cycle of MRT at a single tertiary referral centre between 2018 and 2022. The evaluation focused on physical, emotional, social, and practical concerns impacting the caregivers.

Fifty patients were included in the study, treated with [¹³¹I]sodium iodide, [¹³¹I]meta-iodobenzylguanidine (mIBG), or [¹⁷⁷Lu]lutetium DOTATATE. The median patient age was 13 years. Thematic analysis identified several key areas of concern: limited access to psychosocial support services, financial burdens due to travel and time off work, and MRT-specific challenges including enforced isolation and separation from family members during treatment.

Holistic needs assessments are vital in identifying and addressing unmet needs in MRT. A coordinated, family-centred, multidisciplinary approach is essential. Future improvements should include enhanced training for healthcare professionals, use of virtual peer support, support for education continuity, and better integration of local resources to support families throughout the treatment journey.