Concordance, comfort and care: how advances in subcutaneous infusion needle design are transforming thalassaemia treatment in the UK
Year: 2025
Type: article
Study design: Observational Study
Abstract: Background Thalassaemia is a severe inherited haemoglobin disorder that requires lifelong blood transfusions. In transfusion-dependent thalassaemia, continuous iron chelation therapy is essential to prevent organ damage from iron overload. Subcutaneous desferrioxamine has historically been the cornerstone of chelation but imposes a heavy treatment burden, with adherence often compromised by pain, fatigue and psychosocial strain. More recently, the evolution of infusion devices, from traditional butterfly needles to smaller-gauge needles such as Neria ™ (previously marketed as Thalaset) and the cannula-based Neria ™ Guard, has aimed to improve patient comfort and treatment concordance. However, little is known about how these device changes have shaped patient and caregiver experiences in the UK. Methods This evaluation work employed a mixed-methods design, combining a structured survey with open-ended qualitative questions in addition to interview feedback. Participants included patients and carers with direct experience of subcutaneous desferrioxamine therapy across different age groups. Quantitative data were analysed descriptively, while qualitative responses were examined thematically to capture lived experiences, psychosocial impacts and perspectives on device usability. Results Device choice emerged as a key determinant of treatment concordance. Traditional butterfly needles were strongly associated with pain, skin reactions, sleep disruption and reduced willingness to initiate infusions. In contrast, Neria and Neria Guard were consistently described as more comfortable, less traumatic and easier to integrate into daily routines. Participants reported that reduced discomfort improved their confidence, independence and overall quality of life. Carers, particularly parents administering therapy to children, described less emotional strain when using newer devices. Nonetheless, adherence challenges persisted, especially among adolescents and young adults, reflecting ongoing psychosocial barriers, such as treatment fatigue and stigma. Conclusion The evolution of subcutaneous infusion devices has had a tangible impact on patient and carer experiences in thalassaemia. While newer devices reduce physical discomfort and support greater concordance, the broader psychosocial burden of lifelong chelation remains considerable. Findings highlight the importance of patient-centred device design and the need for holistic support strategies that address both the technical and emotional dimensions of chronic therapy. Disclaimer This study was sponsored by Convatec; however, Convatec did not influence the study design, and the discussions, conclusions and interpretation of results in this manuscript are solely the opinion of the author.
Source: British Journal of Nursing
Author: Roanna Maharaj
Institution: Trinity Health
Language: English
Subfield: Genetics
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W7119614801