Facilitating informed decision-making in haemato-oncology

Aims and Objectives The underlying hypothesis is that delivery of personalized evidence-based information at key decision points along the care-pathway will facilitate engagement of patients and clinicians in shared decision-making that will, in turn, support and improve clinical practice. Such models will also provide information on the cost-effectiveness of alternative interventions to managers and commissioners. Background and Rationale Characterized by their remitting/relapsing nature, the pathways of patients with chronic haematological malignancies are diverse; some patients having long periods without treatment, others receiving multiple courses of chemotherapy and a few, particularly those with myeloma, having high dose chemotherapy and bone marrow transplants. While such cancers are presently incurable and their management is often based on subjective assessment of symptom burden, their prevalence is increasing as the population ages, new diagnostic techniques are developed, and the numbers and combinations of life-prolonging treatments continue to expand. Furthermore, the availability of increasing numbers of patient and tumour associated prognostic markers, and the incorporation of these data into existing prognostic scores, means that personalized/stratified approaches to the treatment of these cancers are becoming progressively more possible. All of this means that patients, clinicians and commissioners face increasingly complex choices about therapeutic options that differ in efficacy, toxicity, and cost (personal and financial). However, whilst information on the likely need for and effectiveness of treatment, its consequences for the patient s lifestyle, and costs to the healthcare system lie at the heart of effective shared decision-making, there is an acknowledged dearth of appropriate information for haematological cancers – and it is this challenge that provides the underpinning rationale for this programme. Research Plan Representative of the spectrum of chronic haematological malignancies, this programme focuses on the information needs of patients with three exemplar chronic haematological malignancies: chronic lymphocytic leukaemia, follicular lymphoma and myeloma – which combined account for around 45% of newly diagnosed lymphoid malignancies. The programme of work is predicated on the established expertise and infrastructure of the Haematological Malignancy Research Network (www.hmrn.org), which was successfully initiated in 2004 with the aim of providing robust generalizable data to inform research and clinical practice – both locally and nationally. HMRN s catchment population (>3.8 million) has a similar socio-demographic profile to the country as a whole, and patient care is provided by a unified clinical network organized into five multi-disciplinary teams (MDTs) that work to common guidelines. Importantly, all diagnoses (>2,200 new patients annually), including disease progressions and transformations, are coded to the latest WHO classifications by clinical staff at a single integrated haematopathology laboratory that contains all of the technology and expertise required for diagnosis and on-going monitoring. Within HMRN all patients have full treatment, response and outcome data collected to clinical trial standards; and the study operates with Section 251 support under the NHS Act 2006, enabling linkage to nationwide information on deaths, cancer registrations, and Hospital Episode Statistics. The programme will be carried out in five distinct, but overlapping, work packages: Exploration and analysis of information needs, decision-making processes and preferences Population-based pathway analyses and prognostic model development Cost effectiveness/economic analysis, and economic evaluation Development of information resources to support decision-making Feasibility testing of patient experience survey methods and use of information resourc