BACKGROUND: Haematological malignancies (blood cancers) often follow chronic trajectories that can span many months or years. Management of these diseases typically involves periods of 'Watch & Wait', whereby patients are monitored by the hospital and only treated at progression, if or when this occurs, which might be never or on multiple occasions. Such remitting-relapsing pathways are unpredictable and can cause anxiety and distress. This study aimed to generate evidence about information preferences, with a view to underpinning future patient-facing resources; potentially mitigating psycho-social difficulties and promoting effective shared decision-making. METHODS: A qualitative study was conducted, set within a UK population-based cohort of patients with haematological malignancies. Sampling was purposive, based on age (initially around the median age of diagnosis) and disease subtype (chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma and myeloma); and in-depth interviews took place with 35 patients (10 with relatives). Analysis drew on qualitative description and thematic content analysis and included critical reading and annotation of transcripts, identification of common and rare phenomena, generation of codes and coding of material, and theme development. RESULTS: Patients discussed their preferences and experiences at length and rich data were generated from diagnosis onwards, across diagnostic subtypes. The overarching theme identified was 'Variations in preferences' with needs seen to differ from person to person; as well as changing over time for individuals. Five sub-themes were identified: 1) To know or not to know? 2) Needs are dynamic; 3) The polarising issue of prognosis; 4) Preferred sources; and 5) Differences in content, depth and presentation. CONCLUSIONS: Varied, dynamic information preferences indicate that resources should be developed in a way that provides maximum choice, enabling patients to select relevant material at different time-points on their trajectory. The development of blood cancer subtype-specific "real-world clinical scenarios" could improve patient experiences and inform shared decision-making.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)