A study to explore the experiences of FL patients on Watch&Wait

  • Research type

    Research Study

  • Full title

    A Phenomenological Study of Follicular Lymphoma Patients Experience on watch and wait after first line of treatment.

  • IRAS ID

    159165

  • Contact name

    Alexandra M West-Oram

  • Contact email

    alex.west-oram@rmh.nhs.uk

  • Sponsor organisation

    St George's University of London

  • Duration of Study in the UK

    0 years, 3 months, 11 days

  • Research summary

    The study will be looking at the experiences of follicular lymphoma patients on a watch and wait programme. Individuals diagnosed with follicular lymphoma who have completed their first line of treatment will be invited to participate in the study. Each individual will be interviewed and qualitative information gathered by way of a semi structured interview. This study is a research project as part of an MSc. It is an area of interest that has not been widely researched in UK, however there is research being done with other tumor groups such as prostate, ovarian and breast cancer patients who are on watch and wait programmes. Until recently the median survival of follicular lymphoma patients was 9-10 years, but with the advent of new treatment modalities and better supportive care median survival has increased to 14 years (Keegan et al., 2009, and Fisher et al., 2005). As survival rates are increasing the question of providing appropriate support is an increasing area of concern.
    Due to the time element and limited resources, the study will be conducted on a relatively small scale. Eligible participants will be identified from the existing lymphoma patients’ database, which the researcher has access to. It is estimated that approximately 30 people will be eligible, and of those 8-10 will register interest. This has been discussed with the academic supervisor and agreed that this is the number that can realistically be expected to respond.

    Invited participants will receive an invitation by post. An information sheet will be included and will explain the purpose of the study and what will be involved. The information sheet will state that participation is voluntary and will not affect care in any way. Prior to taking consent capacity will be assessed using verbal assessment and direct questioning. The researcher has experience with assessing for capacity for standard assessments for procedures. The participant will be given time to ask questions before signing the consent form.

    Caldicott principles will be adhered to. Identifiable data will not be used, and names will be replaced with a number. All information will be stored in a locked drawer in a locked room and electronic data will be stored on a password protected computer, and encrypted memory sticks.

    If a participant was to disclose information that revealed a participant or another person was at risk of harm, then only at this point would confidentiality be breached. Once the study has been completed collected data will be discarded in a safe and confidential manner.

  • REC name

    London - Fulham Research Ethics Committee

  • REC reference

    14/LO/2168

  • Date of REC Opinion

    22 Dec 2014

  • REC opinion

    Favourable Opinion