Validating implementing an outcome measure; Paediatric Hip Conditions
Research type
Research Study
Full title
Utility, Validity and Implementation of a Patient-Based Quality of Life (QoL) Outcome Measure for Paediatric Hip Conditions
IRAS ID
160101
Contact name
Tina Gambling
Contact email
Sponsor organisation
Cardiff University
Research summary
Three main paediatric hip conditions (Hip Dysplasia, Perthes disease, Slipped Upper Femoral Epiphyses) frequently result in a life-time of significant ill-health and multiple operations, involving long periods of uncertainty, rehabilitation and distress for patients, parents and carers. Early diagnosis, specialist surgical or non-surgical treatment can delay or prevent the development of osteoarthritis, postpone radical surgical options and preserve the natural joint. Little is known about the experience of persons with these conditions or their impact on quality of life (QoL). This research aims to explore the clinical utility, validity, reliability and use in clinical practice of a patient-centred outcome measure, the ‘QoL Concerns and Impact’ of paediatric hip conditions.’
A four-phased, multi-method approach will be used. Participants will be recruited from the Birmingham Royal Orthopaedic Hospital specialist hip clinic. If funding becomes available we would use further sites. Phase One assesses the usefulness of the measure in clinical practice (observation of clinician patient consultations and interviews). Phase Two explores (i) the measure’s validity and internal consistency (postal administration of the measure to 350 patients with one of the conditions, asking about current and 3 months before perceptions); plus 4 measures relating to body image self-esteem and quality of life. (ii) test-retest reliability (a sub-sample of 50% of those completing the questionnaire re-complete the questionnaire, sent out two-weeks post-receipt of their initial completed questionnaire). Following psychometric analysis, the measure will be refined. Phase Three focuses on integrating the measure into clinical practice, working with all members of the hip clinic staff (via a collaborative action research design based on two cycles, comprising implementation, feedback and reflection workshops with the clinical team). Phase Four evaluates the measure’s use, potential for sustained use and facilitating/inhibiting factors for the measure’s use (clinic consultation observations and interviews with key members of the hip clinic staff)
REC name
Wales REC 6
REC reference
14/WA/1137
Date of REC Opinion
23 Oct 2014
REC opinion
Further Information Favourable Opinion