EXTREQOL

  • Research type

    Research Study

  • Full title

    Experiences of treatment and quality of life of men with metastatic castrate resistant prostate cancer

  • IRAS ID

    192049

  • Contact name

    Valerie Jenkins

  • Contact email

    val@sussex.ac.uk

  • Sponsor organisation

    Brighton and Sussex Medical School

  • Duration of Study in the UK

    2 years, 0 months, 1 days

  • Research summary

    Men with metastatic Castrate Resistant Prostate Cancer (mCRPC) report significantly poorer quality of life (QoL) than other groups of men with prostate cancer. They experience fatigue, pain, and decreased physical activity. We are interested in how men and their families decide on treatments, how they source information to make treatment decisions and how much health care professionals (HCPs) engage with them in the decision making process. We want to find out if the treatment information provided by HCPs matches that received by the patients. We also want to measure the impact of systemic treatments on the quality of life for men with mCRPC and their families.
    We will explore this by examining the quality of life and information needs of 130 men with mCRPC at the start of treatment, and then 3 and 6 months into treatment using validated measures. Also, we will conduct interviews with 30/130 men and if possible interview their partners for their perspectives including factors that drive treatment decision making. The interviews would take place twice (prior to starting treatment and whilst on treatment).
    In parallel we will conduct an online survey with UK clinicians, nurses and other health care professionals to explore their views about treatments, side effects and decision making.
    This study will provide important information to share with patients, prostate charity groups and health care professionals. It will highlight the experiences of treatment decisions, what sorts of information helped with decision making and how the perceived benefits and harms of treatment affect patients’ and families’ lives. Also the results will be useful for preparation of written materials and/or to contribute to communication skills training programmes for prostate cancer health professionals and potentially to policy makers when determining the harms and benefits, not just economic “costs” of different treatment options.

  • REC name

    London - Surrey Borders Research Ethics Committee

  • REC reference

    16/LO/0403

  • Date of REC Opinion

    17 Mar 2016

  • REC opinion

    Favourable Opinion