Validating a new PROM for adults with learning disability

  • Research type

    Research Study

  • Full title

    Validating a new patient-reported outcome measure for adults with learning disabilities

  • IRAS ID

    128973

  • Contact name

    Roman Raczka

  • Contact email

    roman.raczka@lbhf.gov.uk

  • Research summary

    There is currently no ’gold standard’ quality of life measure for adults with learning difficulties to use as a patient-reported outcome measure. Following a small scale pilot looking at the routinely implemented patient reported outcome measures in LD services in CLCH, a specific measure has been developed, the Mini MANS-LD. Based on an existing measure, the Maslow Assessment of Needs Scale (MANS-LD), it is proposed to use the new measure in conjunction with the EQ-5D-Y, a health based quality of life measure widely used in the NHS, to measure outcomes for adults with learning disabilities.

    The aim of this research project is to validate the Mini MANS-LD as a new measure. This will involve administering the new measure at two time points to assess the sensitivity of the measure: at the start of an intervention, and three months later. It will also be necessary to administer a comparison measure, the Personal Wellbeing Index (PWI-ID), to allow construct and congruent validity to be tested.

  • REC name

    North of Scotland Research Ethics Committee 1

  • REC reference

    13/NS/0067

  • Date of REC Opinion

    10 Jun 2013

  • REC opinion

    Further Information Favourable Opinion