Distress Thermometer for adult patients with diverse sex development

  • Research type

    Research Study

  • Full title

    The Distress Thermometer as a screening tool in multidisciplinary clinics for people affected by diverse sex development (DSD)

  • IRAS ID

    146186

  • Contact name

    Lih-Mei Liao

  • Contact email

    Lih-Mei.Liao@uclh.nhs.uk

  • Sponsor organisation

    University College London (UCL)

  • Duration of Study in the UK

    0 years, 11 months, 30 days

  • Research summary

    Diverse or disorders of sex development (DSD) is a set of rare genetic conditions affecting the development of the reproductive and sex organs. The physical and psychological effects complex. Throughout their lifespan, affected people are faced with a range of challenging psychosocial issues surrounding their condition.

    It is not always obvious to care providers how distressed patients feel when they present in clinic. The use of a simple self-rating scale could help clinicians to pick up patient distress more consistently. Where appropriate, they can have a useful conversation with the patient about his/her worries, and help them decide whether a referral for psychological support or other services was warranted.

    The Distress Thermometer (DT) is such a self-report distress screening method, whereby the patient puts a mark along a 'thermometer' with 0 at the bottom and 10 at the top, to indicate current distress. First developed for cancer services, the DT has been used extensively in outpatient clinics, both in the UK and elsewhere, across diverse social, economic, educational, ethnic, age and clinical groups. Its value as a tracker of emotional distress - to enable doctors and nurses to know from appointment to appointment how the patient is doing - is generally well received. In our DSD clinics, we have adapted the DT for routine clinical use with the same aim - to facilitate conversation between doctor and patient so to identify more consistently patient concerns.

    However, is a single rating sensitive and accurate enough to assess DSD distress? Ideally, we should first compare it with more detailed assessments. If the DT is just as good as the more detailed measures, such as the GAD7 and PHQ9 routinely used in primary care, then we can achieve the same aim whilst saving time and effort for doctors and patients.

  • REC name

    London - City & East Research Ethics Committee

  • REC reference

    14/LO/2149

  • Date of REC Opinion

    20 Dec 2014

  • REC opinion

    Favourable Opinion