NURSE-LED, PERSON-CENTRED CARE IN CHRONIC DISEASE MANAGEMENT: EVIDENCE, IMPLEMENTATION, AND IMPACT IN MYELOPROLIFERATIVE NEOPLASMS

Chronic diseases are the leading global cause of morbidity and mortality and require long-term, complex, and multidimensional management. Chronic haematological malignancies, including Myeloproliferative Neoplasms (MPNs), follow prolonged disease trajectories and are characterised by a substantial symptom burden with significant impairment in quality of life (QoL). Despite therapeutic advances, patients with MPNs require support for symptom monitoring and disease self-management. Increasing evidence demonstrates that nurse-led interventions in chronic conditions enhance medication adherence, symptom control, self-efficacy, care coordination, and overall patient experience, particularly when integrated with systematic patient-reported outcome measures (PROMs). Methods This doctoral research employed a multi-phase design. Phase 1 was a systematic review assessing the effectiveness of nurse-led interventions in improving medication adherence among adults with chronic diseases. Phase 2, conducted within the LIMIT study, comprised: (a) an Interpretative Phenomenological Analysis of focus groups with patients with MPNs to explore their lived experience; (b) a quality improvement project, informed by Santana’s Person-Centred Care framework and iterative PDSA cycles, to implement a structured nurse-led visit based on PROMs assessment, education, and self-management support; (c) a one-year longitudinal study with nurse-led PROMs assessments at baseline, 6, and 12 months; the present thesis reports baseline cross-sectional findings. Results The systematic review included 22 trials and showed that nurse-led interventions generally improved medication adherence, particularly when delivered face-to-face, as well as self-management, psychosocial well-being, and healthcare 3 utilisation. The qualitative study on MPN patients identified three themes describing the MPN experience: (a) an unexpected diagnosis with lasting symptom impact, (b) emotional adjustment, and (c) the need for multilayered, accessible, person-centred care. The nurse-led visit demonstrated high feasibility, acceptability, and sustainability. Among 102 patients assessed at baseline, symptom burden was considerable, fatigue was highly prevalent, and psychological symptoms common and clinically relevant. Nearly half of the patients showed low activation levels, indicating a need for greater support in managing their condition. Multiple moderate-to-severe symptoms were strongly associated with poorer QoL and higher anxiety and depression. Conclusions MPN care requires more than pharmacological treatment; it demands an integrated, person-centred approach in which nurses can play a central role in symptom monitoring, education, and psychosocial support. In all studies of this PhD dissertation, findings consistently support the implementation of structured nurse-led interventions within MPN care pathways to improve patient outcomes, engagement, satisfaction, and continuity of care