PROMs Research Unit

Our Aim

Patient reported outcome measures (PROMs) measure patients’ health or quality of life from their perspective using self-completed questionnaires. PROMs can be collected before and after a procedure or at regular intervals in chronic long-term conditions.

PROM measurement and application is vital to provide high-quality healthcare by evaluating the performance of health care providers and guiding NHS reforms. PROMs also provide a platform to involve patients and their carers in the provision of healthcare and shaping the NHS.

Our aim is to undertake collaborative research to develop and validate PROMs and apply them in routine clinical care to improve patient care.

Our PROMs Experience

We have extensive experience in developing and validating PROMs and have been undertaking this work for over 15 years. Our developed PROMs have been used extensively in clinical trials, routine clinical care in outpatient and inpatient settings and recently in mobile phone devices to allow patients to report on their own health outcomes. To date, our PROMs development work has covered a wide range of clinical areas including Inflammatory Bowel Disease, endoscopy, paediatrics, facial skin cancer and reconstruction, lymphoedema, listening effort and liver disease.

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Researchers with patient completing form

More Information about Swansea PROMs

Affiliated Staff

Prof Hayley Hutchings
Prof John Gordon Williams
Dr Laith Al-Rubaiy
Dr Tom Dobbs
Mrs Sarah Hughes
Dr Angela Williams
Dr Phedra Dodds

Available PROMs

Manchester-Minneapolis quality of life –UK Child form (MMQL-UK, CF)
Manchester-Minneapolis quality of life –UK Parent form (MMQL-UK, PF)
The Inflammatory Bowel Disease Index (IBDEX)
Gastrointestinal Symptom Rating Questionnaire (GSRQ)
Gastrointestinal Endoscopy Satisfaction Questionnaire (GESQ)
Crohn’s and Ulcerative Colitis Questionnaire, Long Form (CUCQ32)
Crohn’s and Ulcerative Colitis Questionnaire, Short Form (CUCQ8)
Upper Limb Lymphedema Quality of Life questionnaire (ULLQoL)
Primary Biliary Cholangitis, short form (PBC-10)
Listening Effort Questionnaire- Cochlear Implant (LEQ-CI)

If a specific PROM you were looking for is not available, more PROMs are to come so keep in touch and check back regularly.

You can request a PROM using our PROM request form.

PROMs Research Outputs

Books

Hutchings HA and Alrubaiy L. Crohn’s Disease Activity Index. In: Michalos AC (Ed.). Encyclopedia of Quality of Life and Well-Being Research. Springer, Dordrecht, Netherlands: Springer, pp1354-1357.

Papers

Alrubaiy L, Mells G, Flack S, Bosomworth H, Hutchings H Williams J, Jones D on behalf of the UK-PBC Research Consortium. PBC-10: A short quality of life measure for clinical screening in primary biliary cholangitis. Alimentary Pharmacology and Therapeutics 2019;50:1223–1231. DOI: 10.1111/apt.15554

Alrubaiy L, Mells G, Flack S, Bosomworth H, Hutchings H, Williams J, Jones D on behalf of the UK-PBC Research Consortium. Editorial: rapid assessment of health-related quality of life in PBC - no excuse not to ask. Authors' reply. Alimentary Pharmacology and Therapeutics 2019;in press

Hutchings HA, Cheung WY, Williams JG, Cohen D, Longo MF, Russell IT. Can electronic routine data act as a surrogate for patient-assessed outcome measures? International Journal of Technology Assessment in Health Care 2005, 21(1): 138-143.

Upton P, Eiser C, Cheung WY, Hutchings HA, Jenney M, Maddocks A, Russell IR, Williams JG, Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory^TM 4.0 (PedsQL^TM) generic core scales. Health and Quality of Life Outcomes 2005, 3: 22.

Hutchings HA, Upton P, Cheung W-Y, Maddocks A, Eiser C, Williams JG, Russell IT, Jackson S, Jenney MEM. Adaptation of the Manchester-Minneapolis quality of life instrument for use in the UK population. Archives of Disease in Childhood 2007; 92: 855-860

Hutchings HA, Upton P, Cheung W-Y, Maddocks A, Eiser C, Williams JG, Russell IT, Jackson S, Jenney MEM. Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF). Health and Quality of Life Outcomes 2008, 6:19.

Hutchings HA, Wareham K, Baxter JN, Atherton P, Kingham JGC, Duane P, Thomas L, Thomas M, Ch’ng CL, Williams JG. A randomised, cross-over, placebo-controlled study of Aloe vera in patients with Irritable Bowel Syndrome: Effects on patient quality of life. ISRN Gastroenterogy Volume 2011, Article ID 206103, doi: 10.5402/2011/206103

Alrubaiy L, Hutchings HA, Williams JG. Protocol for a prospective multicentre cohort study to develop and validate two new outcome measures for patients with inflammatory bowel disease. BMJ Open: 2013;3:e003192.doi:10.1136/bmjopen-2013-003192

Alrubaiy L, Hutchings HA, Dodds P, Watkins A, Russell IT, Williams JG. Development of a short questionnaire to assess the quality of life in Crohn’s disease and ulcerative colitis. Journal of Crohn’s and Colitis, 2014. doi: 10.1093/ecco-jcc/jju005.

Alrubaiy L, Hutchings H, Williams J. Assessing patient reported outcome measures (PROMS): A practical guide for gastroenterologists. United European Gastroenterology Journal, 2014. Doi:10.1177/2050640614558345

Alrubaiy L, Hutchings HA, Dodds P, Watkins A, Russell IT, Williams JG. Development and validation of a new disease severity index: The inflammatory bowel disease index (IBDEX). Frontline Gastroenterology Published 12 November 2014, doi:10.1136/flgastro-2014-100530
http://fg.bmj.com/content/early/2014/11/12/flgastro-2014-100530.abstract?papetoc

Alrubiay L, Rikaby I, Dodds P, Hutchings HA, Williams JG. Systematic review of the health related quality of life (HRQoL) measures for inflammatory bowel disease. Journal of Crohn’s and Colitis, 2015. Doi: 10.1093/ecco-jcc/jjv002

Hutchings HA, Cheung W-Y, Russell IT, Durai D, Alrubaiy L, Williams JG. Psychometric development of the Gastrointestinal Symptom Rating Questionnaire (GSRQ) demonstrated good validity. Journal of Clinical Epidemiology, 2015. doi:10.1016/j.jclinepi.2015.03.019

Alrubiay L, Rikaby I, Mohamed S, Hutchings HA, Williams JG. Systematic review of the clinical disease severity indices for inflammatory bowel disease. Inflammatory Bowel Diseases 2015, 21(10):2460-2466.

Alrubiay L, Rikaby I, Hutchings HA, Williams JG. Can the inflammatory bowel disease registry lead to improved quality of care? Journal of Taibah University Medical Sciences, 2015. Doi: 10.1016/j.jtumed.2015.02.008

Hutchings HA, Cheung W-Y, Alrubaiy L, Durai D, Russell IT, Williams JG. Development and validation of the Gastrointestinal Endoscopy Satisfaction Questionnaire (GESQ). Endoscopy, 2015. Doi: 10.1055/s-0034-1392547

Hutchings HA, Alrubiay L, Watkins A, Cheung W-Y, Seagrove AC, Williams JG. Validation of the Crohn’s and Ulcerative Colitis questionnaire in patients with acute severe ulcerative colitis. United European Gastroenterology Journal, 2016. Doi: 10.1177/2050640616671627

Hughes SE, Rapport F, Boisvert I, McMahon C, Hutchings HA. Patient-reported outcome measures (PROMs) for assessing perceived listening effort in hearing loss: protocol for a systematic review. BMJ Open 2017; 0:e014995. doi:10.1136/bmjopen-2016-014995

Hutchings HA, Alrubaiy L. Patient Reported Outcome Measures in Routine Clinical Care: The PROMise of a Better Future? Invited Editorial. Digestive Diseases and Sciences, 2017, 62(8), 1841-1843. Doi: 10.1007/s10620-017-4658-z

Dobbs T, Hutchings HA, Whitaker I. United Kingdom based prospective cohort study to Anglicise and validate the FACE-Q Skin Cancer module in facial skin cancer patients undergoing surgical reconstruction – The PROMISCR (Patient Reported Outcome Measure In Skin Cancer Reconstruction) study. BMJ Open 2017: 7: e016182. DOI: 10.1136/bmjopen-2017-016182

Hughes SE, Hutchings HA, Rapport FL, McMahon CM, Boivert I. Social Connectedness and Perceived Listening Effort in Adult Cochlear Implant Users: A Grounded Theory to Establish Content Validity for a New Patient-Reported Outcome Measure. Ear and Hearing. February 8, 2018 - Volume Publish Ahead of Print - Issue - p doi: 10.1097/AUD.0000000000000553

Williams A, Rapport F, Russell IT, Hutchings HA. Upper limb lymphedema: development and validation of patient-reported outcome measure to assess health-related quality of life. Journal of Clinical Epidemiology, 2018. Doi: 10.1016/j.jclinepi.2018.04.014

Dobbs T, Hughes S, Mowbray N, Hutchings HA, Whitaker IS. How to decide which patient-reported outcome measure to use? A practical guide for plastic surgeons. Journal of Plastic, Reconstructive & Aesthetic Surgery, 71: 957-966, 2018. https://doi.org/10.1016/j.bjps.2018.03.007

Dobbs TD, Gibson JAG, Hughes S, Thind A, Patel B, Hutchings HA, Whitaker I. Patient reported outcome measures for soft tissue facial reconstruction: a systematic review and evaluation of the quality of their measurement properties. Plast. Reconstr. Surg. 143: 255, 2019

Dobbs TD, Jovic TH, Jessop Z, Kyle A, Hutchings HA, Whitaker IS. Objective and patient-reported assessments of skin grafts and keystone flaps- A pilot retrospective cohort study. Plast Reconstr Surg Glob Open 2018;6:e2024; doi: 10.1097/GOX.0000000000002024; Published online 16 November 2018.

Dobbs TD, Samarendra H, Hughes S, Hutchings HA, Whitaker I. Patient reported outcome measures for facial skin cancer: a systematic review and evaluation of their methodological and psychometric qualities. British Journal of Dermatology 2018: DOI 10.1111/bjd.17342.

Dobbs TD, Samarendra H, Hughes S, Hutchings HA, Whitaker IS. The FACE‐Q Skin Cancer Module addresses post‐resection aesthetic and quality of life outcomes: reply from authors, British Journal of Dermatology, 180, 4, (954-954), (2019).

Hughes S, Rapport F, Watkins A, Boivert I, McMahon C, Hutchings H. Study protocol for the validation of a new patient-reported outcome measure (PROM) of listening effort in cochlear implantation: The Listening Effort Questionnaire-Cochlear Implant (LEQ-CI). BMJ Open 2019; 9: e028881. doi: 10.1136/bmjopen-2018-028881

Hughes SE, Hutchings HA, Peters S, Dobbs T, Boivert I, McMahon CM, Rapport F. Assessing the Quality of Patient Reported Outcome Measures (PROMs) Used in the Measurement of Listening Effort in Hearing Loss: A Systematic Review. International Journal of Audiology: under review

Dobbs TD, Ottenhof M, Gibson JAG, Whitaker IS, Hutchings HA. The Patient Reported Outcome Measures In Skin Cancer Reconstruction (PROMISCR) study - anglicisation and initial validation of the FACE-Q Skin Cancer module in a UK cohort. Journal of Plastic, Reconstructive & Aesthetic Surgery: under review

PROMs Current Projects

Evaluating QUAlity of Life of AF patients following a bleed (EQUAL-AF)
The development and validation of a patient-reported outcome measure assessing listening effort in adult cochlear implant patients
Patient reported outcome measures for facial skin cancer and its post-treatment reconstruction
Validation of the short form of GESQ (Gastrointestinal endoscopy satisfaction questionnaire)
Using PBC-10 questionnaire to support the care of patients with primary Biliary Cholangitis (PBC) using a nationwide registry
Development of Ascites Quality of life questionnaire for patients with chronic liver disease
Development of Steroid related quality of life questionnaire in patients with IBD and Autoimmune hepatitis
Development of Autoimmune hepatitis quality of life questionnaire
Collaborative work with St Mark's fistula research unit to develop novel questionnaires to assess the QoL in patient with perianal fistula
Designing and delivering a system for routine PROMs collection for skin cancer patients and integration with other routinely collected health data through SAIL

PROMS Collaborations

TBC