Facilitating informed decision making in haemato-oncology

  • Research type

    Research Study

  • Full title

    Facilitating informed decision making in haemato-oncology

  • IRAS ID

    200556

  • Contact name

    Eve Roman

  • Contact email

    eve.roman@york.ac.uk

  • Sponsor organisation

    University of York

  • Clinicaltrials.gov Identifier

    04/Q1205/69, Leeds West REC approval ; PIAG 1-05(h)/2007 , Section 251 support; 04/Q1205/69, York Hospital R&D Sponsor confirmation

  • Duration of Study in the UK

    3 years, 0 months, 0 days

  • Research summary

    There are many different types of blood cancers, and the range of treatments available to manage these diseases is continually expanding. This often complicates decisions about when to start treatment, which is the most appropriate treatment to give and how different approaches will effect patients. With funding from a National Institute for Health Research Programme Grant for Applied Research (NIHR PGfAR), this study will develop evidence-based information to resources for use in multi-disciplinary team meetings and in consultations with patients. These will incorporate information about individual patients and use these to predict variations in hospital event-based activities, quality of life, survival patterns and the costs of different treatments at different time-points on the patient pathway. These resources will facilitate patient engagement in decision making, enabling patients (supported by their doctors and nurses), to make treatment choices that are right for them.

    The programme is set within the Yorkshire and Humberside Haematology Network (YHHN), an established population-based study, and permissions are already in place (REC, R&D and Section 251), to collect most of the required data. However, two further sources of information are required (one qualitative, the other a questionnaire), and these studies are the focus of this application.

    During the qualitative project, data will be collected at interviews and focus groups with patients, their relatives/caregivers and haematology staff. These will explore decision making processes, and beliefs about the factors influencing these. We will examine how people negotiate different relationships and socio-cultural circumstances to find the best outcome. We will also explore how preferences for the content, format and delivery of information differ between individuals, at different points in the disease trajectory, and in different settings. This information will be used to ensure that the information resources developed are suitable for use in clinical practice.

    Questionnaire data will be collected from patients each time they attend the haematology clinic during the 3 year programme, and will explore physical and psychological wellbeing, as well as experiences of, and engagement in, decision making. These data will provide a benchmark from which to compare changes to practice after introduction of the information resources developed as a result of the research.

  • REC name

    London - City & East Research Ethics Committee

  • REC reference

    16/LO/0740

  • Date of REC Opinion

    11 Apr 2016

  • REC opinion

    Favourable Opinion