Living with chronic lymphocytic leukaemia: A qualitative evidence synthesis of patient, caregiver and practitioner perspectives.

PURPOSE: Chronic Lymphocytic Leukaemia (CLL) is an incurable, slow-growing blood cancer requiring lifelong surveillance and episodic treatment. While clinical management is well characterised, the experiences of patients, caregivers, and practitioners remain underexplored. This review aimed to integrate these perspectives.

METHODS

A qualitative evidence synthesis was conducted following ENTREQ guidelines. Systematic searches of seven databases and grey literature identified qualitative studies reporting the experiences of patients with CLL, their informal caregivers, and healthcare professionals of managing CLL. Data were analysed using thematic synthesis.

RESULTS

Twenty papers reporting on fourteen studies were included. Three overarching themes emerged. Making Sense of CLL over Time captured diagnosis shock, difficulty accepting an incurable chronic illness, challenges of active surveillance, evolving information needs, and practitioners' efforts to balance clarity and reassurance. Living under the Weight of Illness and Caregiving described persistent emotional strain, illness and treatment effects, social disruption, and isolation from the patient perspective. Caregivers experienced invisible burden while clinicians reported constraints in providing sustained psychosocial support. Resilience and Adaptation in Chronicity reflected coping strategies and support systems. Clinicians highlighted relational continuity and emotional support as central to sustaining resilience.

CONCLUSION

Living with CLL is a dynamic process shaped by chronic uncertainty and ongoing adaptation. Patients and caregivers seek a variety of approaches and psychosocial support to manage CLL. Unmet needs in these areas highlight opportunities to strengthen CLL care by adopting chronic-care models that integrate psychosocial care and involve caregivers.