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Patient Reported Outcome (PROs)

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Facet Feasibility Study: Facet-joint injections for people with persistent non-specific low back pain

Funder: NIHR HTA Programme  Total grant £405,281.60.

Start date: October 2013 End date: January 2016.

PI: Martin Underwood (Warwick Medical School)

Collaborators: Kirstie Haywood (Warwick): Total 11 co-applicants.

Description: Feasibility Study: 1) Systematic reviews of evidence-based addressing five key questions relevant to the proposed RCT (including PRO related questions; 2) Consensus conference; 3) Feasibility RCT. Kirstie Haywood will be responsible for all PRO-related aspects of the feasibility study including a review of evidence (between-group difference), methodological work exploring how best to interpret between group difference in scores and evaluation of PRO application in the RCT (including evaluation of individualised measurement (Patient Generated Index)). KH will also advise on the consensus conference and contribute as an expert in measurement science.

Progress: Monthly team meetings since October 2013. Significant work undertaken to complete systematic review and conduct secondary analysis of available data to support score interpretation (between group differences). Contribute to development of the Consensus Conference – held 26th June 2014. Contribute towards data analysis from this event. Working towards one group publication following the consensus conference and an additional methodological paper re BGD. Focus towards main feasibility RCT from July 2014 onwards.

Publications: Paper from consensus meeting in print. Protocol paper and ‘Between group differences’ paper under review.

Tue 10 Nov 2015, 14:18

COSCA: developing a Core Outcome Set for Cardiac Arrest

Funder: Laerdal Research Grant (£5,000.00) to fund international consensus meeting.

Start date: Consensus meeting 28-29th October, 2015.

PI: Kirstie Haywood (Warwick).

Collaborators: Gavin Perkins (Warwick); Laura Whitehead (Warwick – PhD student) plus co-applicants.

Description: The international consensus is the culmination of a programme of activities working towards the final core outcome set recommendations. The two-day meeting will involve plenary presentations, small group and large group discussion and final voting on the core outcome set. Planned publications include a paper detailing the consensus meeting and COS recommendation. Additional papers will document the stags completed to reach this stage (review of outcomes in cardiac arrest (published Whitehead at al (2015)); qualitative interviews with survivors of cardiac arrest).

Tue 10 Nov 2015, 14:26

Flares in Ankylosing Spondylitis

Funder: NHS Grampian Endowment Grant £12,000.00

Start date: 01/08/2014. End date: 01/02/16

PI: Gareth Jones (Aberdeen).

Collaborators: Kirstie Haywood (Warwick) plus co-applicants.

Description: The programme has two core workstreams:

1) further development and refinement (from a patient perspective) of the Aberdeen Flares Questionnaire: this will involve focus groups with patients with AS, item generation and refinement and construction of a new patient-derived measure (KH will lead on this aspect of the study);

2) A survey of patients with AS (as part of the SIRUS and BSR-BR-AS disease registries – to determine the prevalence of flares, and to examine differences in flare characteristics.

Progress: Stage 1 has been completed; the revised measure is currently being piloted ahead of the large UK survey.

Tue 10 Nov 2015, 14:25

Fatigue and Ankylosing Spondylitis: improving patient outcomes

Funder: National Ankylosing Spondylitis Society (NASS) £29, 864; and Staffordshire and Stoke-on-Trent Partnership NHS Trust £55,657

Start date: 01/10/2016. End date: 30/09/2019

PI: Kirstie Haywood.

Collaborators: Jon Packham (Staffordshire Rheumatology Centre); Sarah Hewlett (Bristol), Paul Creamer (Bristol), Jane Martindale (Wrightington), Ade Adebajo (Sheffield), George Strickland (PPI; Wrightington) and Jean Thompson (PPI; Wrightington).

Description: The programme will have four core workstreams:

1) A systematic review of PROM-based fatigue assessment;

2) A 2-phase qualitative study involving patient interviews and focus groups with patients and health professionals;

3) informed by international best practice, a 3-phase, patient-driven development of a multi-item, AS-fatigue specific PROM; and

4) a comparative psychometric evaluation of the new AS-fatigue PROM in a UK-cohort.

Progress: the researcher (full-time PhD student) has been appointed and jointed the team 01/10/15.

Tue 10 Nov 2015, 14:24

Designing Optimal Management for patients with axial Spondyloarthropathy and fibromyalgia

Funder: ARUK – positive response to Expression of Interest. Full submission reviewed Summer 2015. Following response to reviewers comments, a revised application will be re-submitted to ARUK in January 2016.

Start date: 01/07/2016. End date: 01/07/2019

Funder: ARUK

PI: Gary Macfarlane (Aberdeen)

Collaborators: Kirstie Haywood (Warwick) plus co-applicants.

Description: The programme will have three core workstreams:

1) A cross-sectional survey of patients recruited to the BSRBR-AS to describe the prevalence of fibromyalgia (FMS) in patients with axial spondyloarthropathy (AxSpA) and the extent of disease activity (amongst patients who meet ASAS criteria for axial SpA, to determine the proportion who meet with 2011 ACR Research Criteria for FMS);

2) A qualitative study to explore patient experiences and AxSpA-related priorities and views on a short telephone-administered CBT programme (tCBT). Workstream 2 will involve a systematic review of the quality of available PROs; qualitative interviews to explore the lived experiences of patients with AxSPA and AxSPA-FMS; a workshop to explore the acceptability of tCBT for these groups. Finally, a consensus meeting with key stakeholders will work towards consensus on key issues of relevance to the proposed trial. KH will lead workstream 2.

3) will seek to design and implement a short course of tCBT to test its acceptability. A qualitative exploration of patients experiences of the tCBT programme and the views of those who did not complete the programme will be included (led by KH).

Progress: Grant submitted Summer 2015. For re-submission January 2016.

Tue 10 Nov 2015, 14:23

Chronic Headache Education and Self-management Study (CHESS)

Funder: NIHR Programme Grants for Applied Research. Total grant £1,999,936.00

Start date: 05/01/2015. End date: 04/01/2020.

Funder: NIHR Programme Grants for Applied Research.

Collaborators: Kirstie Haywood (Warwick): Total 12 co-applicants.

Description: To develop and test a self-management support programme for people living with chronic headache comprising individually tailored and generic components (CHESS intervention). The programme will have six work-streams:

1) piloting the recruitment process;

2) developing a brief diagnostic interview to support accurate diagnosis;

3) developing an education and self-management support intervention;

4) choosing the most appropriate PROMs: including a review of PROMs; a review of outcomes used in headache clinical trials; development of a core outcome set for headache trials (KH to lead);

5) running a RCT and parallel economic intervention;

6) evaluate the processes needed to develop and deliver the trial.

Progress: Grant awarded. Project commenced January 2015. Making progress with both reviews; developing protocol for core outcome set and consensus meeting (for Summer 2016).

Tue 10 Nov 2015, 14:20

Recommendations for exercise adherence measures: Findings from a systematic review and consensus workshop.

Funder: Chartered Society of Physiotherapy Research Foundation Total grant £75,000

Start date: April 2013. End date: June 2014.

PI: Sionnadh Maclean (Sheffield Hallam University)

Collaborators: Kirstie Haywood (Warwick): Total 4 co-applicants.

Description: Two workstreams: 1) Systematic reviews of use and quality of measures of exercise adherence in the musculoskeletal population (published research). 2) Consensus conference – to explore the relevance and acceptability of measures of exercise adherence. KH to provide guidance and act as third assessor for the systematic review; and direction for the development / running of the consensus conference (acting as facilitator during the event).

Progress: Regular teleconferences and several face-to-face meetings. All stages of the proposed programme completed on time. Consensus meeting held during May 2014 and final report submitted to the Physio Research Society early June 2014. Long report and two manuscripts under development: full review paper under review with Rheumatology (Oxford) (Autumn 2015). Several abstracts submitted to relevant conferences.

Tue 10 Nov 2015, 14:19

Improving outcomes for children with Chronic Fatigue Syndrome / ME (CFS/ME)

Funder: Royal National Hospital for Rheumatic Diseases (RNHRD)

Dates: April 2012 - September 2013.

PI: Kirstie Haywood (Warwick) and Esther Crawley (RNHRD, Bath; Bristol)

Project Team: Simon Collins (Bristol), Kate White (Bristol), Aarti (MSc Student, Bristol).

Description: There are two distinct, but complementary stages to this study.

  • Stage 1: a structured review and critical evaluation of the quality and acceptability of patient-reported outcome measures (PROMs) identified from published research to assess health status and quality of life of children with CFS/ME.
  • Stage 2: a qualitative study exploring children’s’ experiences of CFS/ME and the identification of important outcomes. This stage will involve interviews with children and their parents / carers.

Outcomes of importance will be detailed, and discrepancies with those currently assessed in published research will be highlighted.

Progress: The literature review of patient-reported outcomes measures (PROMs) has been completed and the associated manuscript was submitted for peer review at the end of October 2012.

The interviews were completed over the summer and data is currently being analysed. An associated manuscript is under development. Overall good progress has been being made on this project.

Wed 12 Mar 2014, 10:23

Improving outcomes for patients with fractures of the proximal femur

Funder: NIHR Programme Development Grant

Start date: November 2011. End date: January 2013.

PI: Matt Costa (Warwick Medical School)

Collaborators: Kirstie Haywood (Warwick), Xavier Griffin (Warwick), Felicity Boardman (Warwick), Frances Griffiths (Warwick).

Description: Two workstreams: 1) Systematic reviews of the quality and acceptability of PROMs – a) evaluated following completion by older people; b) an update of the review of PROMs evaluated following completion by people who have sustained hip fracture. 2) Qualitative interviews and focus groups with patients, carers and health professionals. Kirstie Haywood will be responsible for conducting both reviews. KH will also advise on the interviews and focus groups, and contribute to the expert panel.

Progress: Initial team meeting November 2011. Aim to complete systematic reviews by end of January 2012. A team meeting has been arranged for January 2012 to discuss review findings and to inform subsequent interviews and focus groups. Ethical approval now awarded for patient interviews and focus groups; currently negotiating R&D permission for data collection from participating hospital.

Fri 04 Nov 2011, 08:09 | Tags: NIHR