Gwella gwasanaethau gofal iechyd â chymorth cleifion: Casglu PROMs a PREMs ledled Cymru


Gwella gwasanaethau gofal iechyd â chymorth cleifion: Casglu PROMs a PREMs ledled Cymru

(Robert Ieuan Palmer, Kathleen Withers, Amanda Willacott a Grace Carolan-Rees)

Golyga pwysau ar Wasanaeth Iechyd Genedlaethol (GIG) Cymru fod angen ffyrdd newydd o ddarparu safonau uchel o ofal gan ddefnyddio’r adnoddau sydd ar gael. Un dull yw gweithio’n agosach â chleifion, gan gasglu Mesurau Canlyniad a Adroddir gan Gleifion (Patient Reported Outcome Measures) (PROMs) a Mesurau Profiad a Adroddir gan Gleifion (Patient Reported Experience Measures) (PREMs). Gobeithir y bydd casglu data o’r fath yn helpu wrth geisio darparu gofal iechyd darbodus. Rhy’r erthygl hon arolwg o ddatblygu’r system gasglu genedlaethol gyntaf yng Nghymru. Casglodd y system 66,000 PROMs a PREMs gan 25,000 claf dros dair blynedd, a dengys defnydd cynnar o’r data hyn y potensial i wella gwasanaethau. Y bwriad hir-dymor yw gwneud casglu data o’r fath yn rhan reolaidd o ofal iechyd eilaidd yng Nghymru.


Cyfeiriad:

 
  	Robert Ieuan Palmer, Kathleen Withers, Amanda Willacott a Grace Carolan-Rees, ‘Gwella gwasanaethau gofal iechyd â chymorth cleifion: Casglu PROMs a PREMs ledled Cymru’, Gwerddon, 30, Mawrth 2020, 40–67.
   

Allweddeiriau

 
    Mesurau Canlyniad a Adroddir gan Gleifion, PROMs, Mesurau Profiad a Adroddir gan Gleifion, PREMs, GIG Cymru.
    

Llyfryddiaeth:

 
  	
  1. 1000 Lives Improvement (2013), Co-producing services – Co-creating health, <http://www.1000livesplus.wales.nhs.uk/sitesplus/documents/1011/T4I%20%288%29%20Co-production.pdf> [Cyrchwyd: 11 Gorffennaf 2019].
  2. Aaronson, N. K., et al. (1993), ‘The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology’, Journal of the National Cancer Institute, 85 (5), 365–76.
  3. Ackroyd, R., et al. (2006), ‘Cost-effectiveness and budget impact of obesity surgery in patients with type-2 diabetes in three European countries’, Obesity Surgery, 16 (11), 1488–1503.
  4. Amplitude Clinical Outcomes (2019), Amplitude Clinical Outcomes, <https://amplitude-clinical.com/> [Cyrchwyd: 23 Rhagfyr 2019].
  5. Angst, F., et al. (2005), ‘Comprehensive assessment of clinical outcome and quality of life after resection interposition arthroplasty of the thumb saddle joint’, Arthritis Care & Research, 53 (2), 205–13.
  6. Arora, J., Lewis, S., a Cahill A. (2017), Implementing ICHOM’s Standard Sets of Outcomes: Parkinson’s Disease at Aneurin Bevan University Health Board in South Wales, UK, <https://ichom.org/files/case-studies/ABUHB_Case_Study_v11.pdf> [Cyrchwyd: 23 Gorffennaf 2019].
  7. Aylward, M., Phillips, C., a Howson, H. (2013), Simply Prudent Healthcare–achieving better care and value for money in Wales–discussion paper, <http://www.ctrtraining.co.uk/documents/BevanCommissionSimplyPrudentHealthcarev104122013.pdf> [Cyrchwyd: 15 Gorffennaf 2019].
  8. Baker, P., et al. (2012), ‘The effect of surgical factors on early patient-reported outcome measures (PROMS) following total knee replacement’, The Journal of Bone and Joint Surgery. British Volume, 94 (8), 1058–66.
  9. Baker, P. N., et al. (2014), ‘Early PROMs following total knee arthroplasty—functional outcome dependent on patella resurfacing’, The Journal of Arthroplasty, 29 (2), 314–19.
  10. Basser, M. R. (2015), ‘PROMs benefits case study: Patient Reported Outcome Measures (PROMs) outputs’, <https://webarchive.nationalarchives.gov.uk/20180328131500/http://content.digital.nhs.uk/benefitscasestudies/proms> [Cyrchwyd: 20 Ionawr 2020].
  11. Batalden, M., et al. (2016), ‘Coproduction of healthcare service’, BMJ Quality & Safety, 25 (7), 509–17.
  12. Beaton, D. E., et al. (2005), ‘Development of the QuickDASH: comparison of three item-reduction approaches’, Journal of Bone and Joint Surgery, 87 (5), 1038–46.
  13. Beaudreuil, J., et al. (2011), ‘Unité Rhumatologique des Affections de la Main (URAM) scale: Development and validation of a tool to assess Dupuytren's disease–specific disability’, Arthritis Care & Research, 63 (10), 1448–55.
  14. Bergman, B., et al. (1994), ‘The EORTC QLQ-LC13: a modular supplement to the EORTC core quality of life questionnaire (QLQ-C30) for use in lung cancer clinical trials’, European Journal of Cancer, 30 (5), 635–42.
  15. Bevan Commision (2015a), Prudent Health Principles, <http://www.bevancommission.org/en/publications?start=5&count=5&year=2015&d=1> [Cyrchwyd: 11 Gorffennaf 2019].
  16. Bevan Commision (2015b), Prudent Healthcare one year on, <http://www.bevancommission.org/en/publications?year=2015> [Cyrchwyd: 11 Gorffennaf 2019].
  17. Burke, F., a Macey A. (1995), ‘Outcomes of hand surgery. British Society for Surgery of the Hand’, Journal of Hand Surgery, 20 (6), 841–55.
  18. Cahill, A., et al. (2019), Value Based Health Care in Aneurin Bevan University Health Board, <https://issuu.com/danbdavies/docs/the_evolution_of_vbhc_final> [Cyrchwyd: 23 Gorffennaf 2019].
  19. Calvert, M., et al. (2015), ‘Putting patient-reported outcomes on the “Big Data Road Map”’, Journal of the Royal Society of Medicine, 108 (8), 299–303.
  20. Coons, S. J., et al. (2009), ‘Recommendations on evidence needed to support measurement equivalence between electronic and paper‐based patient‐reported outcome (PRO) measures: ISPOR ePRO Good Research Practices Task Force report’, Value in Health, 12 (4), 419–29.
  21. Currie, C. J., et al. (2005), ‘The routine collation of health outcomes data from hospital treated subjects in the Health Outcomes Data Repository (HODaR): descriptive analysis from the first 20,000 subjects’, Value in Health, 8 (5), 581–90.
  22. Darzi, L., a Johnson A. (2008), High quality care for all: NHS next stage review final report, <https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/228836/7432.pdf> [Cyrchwyd: 12 Gorffennaf 2019].
  23. Davies, A., et al. (2006), ‘Development of a disease-specific quality of life questionnaire module for patients with gastrointestinal neuroendocrine tumours’, European Journal of Cancer, 42 (4), 477–84.
  24. Dawson, J., et al. (2014), ‘Development of a patient-reported outcome measure of activity and participation (the OKS-APQ) to supplement the Oxford knee score’, The Bone & Joint Journal, 96 (3), 332–8.
  25. Dawson, J., et al. (2008), ‘The development and validation of a patient-reported questionnaire to assess outcomes of elbow surgery’, The Journal of Bone and Joint Surgery. British Volume, 90 (4), 466–73.
  26. Dawson, J., Fitzpatrick R., a Carr., A. (1996a), ‘Questionnaire on the perceptions of patients about shoulder surgery’, The Journal of Bone and Joint Surgery. British Volume, 78 (4), 593–600.
  27. Dawson, J., Fitzpatrick R., a Carr, A. (1999), ‘The assessment of shoulder instability: the development and validation of a questionnaire’, The Journal of Bone and Joint Surgery. British Volume, 81(3), 420–6.
  28. Dawson, J., et al. (1996b), ‘Questionnaire on the perceptions of patients about total hip replacement’, The Journal of Bone and Joint Surgery. British Volume, 78 (2), 185–190.
  29. Dawson, J., et al. (1998), ‘Questionnaire on the perceptions of patients about total knee replacement’, The Journal of Bone and Joint Surgery. British Volume, 80 (1), 63–9.
  30. Department of Health (2008), Guidance on the routine collection of patient reported outcome measures (PROMs), <https://www.racp.edu.au/docs/default-source/default-document-library/guidance-on-the-routine-collection-of-patient-reported-outcome-measures-(proms)-(pdf-1184-kb)-nhs-(2008).pdf?sfvrsn=4> [Cyrchwyd: 23 Ionawr 2020].
  31. Department of Health (2011), Patient Reported Outcome Measures (PROMs) in England: A Methodology for Identifying Outliers, <https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/216250/dh_133579.pdf> [Cyrchwyd: 23 Rhagfyr 2019].
  32. Devlin, N., ac Appleby J. (2010), Getting the most out of PROMs: Putting health outcomes at the heart of NHS decision making <https://www.kingsfund.org.uk/sites/default/files/Getting-the-most-out-of-PROMs-Nancy-Devlin-John-Appleby-Kings-Fund-March-2010.pdf> [Cyrchwyd: 11 Gorffennaf 2019].
  33. DeWalt, D. A., et al. (2007), ‘Evaluation of item candidates: the PROMIS qualitative item review’, Medical Care, 45 (5), 12–21.
  34. DrDoctor (2019), DrDoctor,<https://www.drdoctor.co.uk/> [Cyrchwyd: 23 Rhagfyr 2019].
  35. EuroQol (2020), EQ-5D, <https://euroqol.org/> [Cyrchwyd: 20 Ionawr 2020].
  36. Garrow, A. P., et al. (2000), ‘Development and validation of a questionnaire to assess disabling foot pain’, Pain, 85 (1–2), 107–13.
  37. GIG Cymru (2016), Mesurau Canlyniadau a Adroddir gan Gleifion <https://proms-cy.nhs.wales/> [Cyrchwyd: 12 Gorffennaf 2019].
  38. Green, C. P., et al. (2000), ‘Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure’, Journal of the American College of Cardiology, 35 (5), 1245–55.
  39. Griffin, D. R., et al. (2012), ‘A short version of the International Hip Outcome Tool (iHOT-12) for use in routine clinical practice’, Arthroscopy: The Journal of Arthroscopic & Related Surgery, 28 (5), 611–18.
  40. Gwasanaeth Gwybodeg GIG Cymru (2019a), Annual PEDW Data Tables <http://www.infoandstats.wales.nhs.uk/page.cfm?pid=41010&orgid=869> [Cyrchwyd: 2 Gorffennaf 2020].
  41. Gwasanaeth Gwybodeg GIG Cymru (2019b), Gofal Eilaidd <https://gggc.gig.cymru/systemau-a-gwasanaethau/gofal-eilaidd/> [Cyrchwyd: 30 Gorffennaf 2019].
  42. Gwasanaeth Gwybodeg GIG Cymru (2019c), Porth Clinigol Cymru <https://gggc.gig.cymru/carousel/porth-clinigol-cymru1/> [Cyrchwyd: 12 Gorffennaf 2019].
  43. Herdman, M., et al. (2011), ‘Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)’, Quality of Life Research, 20 (10), 1727–36.
  44. Hopkins, C., et al. (2010), ‘The 14-item Paediatric Throat Disorders Outcome Test: a valid, sensitive, reliable, parent-reported outcome measure for paediatric throat disorders’, The Journal of Laryngology & Otology, 124 (3), 306–14.
  45. Hopkins, C., et al. (2009), ‘Psychometric validity of the 22‐item Sinonasal Outcome Test’, Clinical Otolaryngology, 34 (5), 447–54.
  46. Hussey, R., et al. (2018), Yr Adolygiad Seneddol o Iechyd a Gofal Cymdeithasol yng Nghymru - Chwyldro o’r Tu Mewn: Trawsnewid Iechyd a Gofal yng Nghymru <https://llyw.cymru/sites/default/files/publications/2018-01/Adolygiad-o-Iechyd%20a-Gofal-Cymdeithasol-adroddiad-terfynol.pdf> [Cyrchwyd: 19 Gorffennaf 2019].
  47. Irrgang, J. J., et al. (2001), ‘Development and validation of the international knee documentation committee subjective knee form’, The American Journal of Sports Medicine, 29 (5), 600–13.
  48. Jenkins, G., Haxton, A., a Kalra, N. (2019), A Value-Based Healthcare approach to diagnosis, treatment of heart failure, cyflwynwyd fel poster yng nghynhadledd ‘Improvement Cymru Conference 2019’.
  49. Kroenke, K., Spitzer, R. L., a Williams, J. B. (2003), ‘The Patient Health Questionnaire-2: validity of a two-item depression screener’, Medical Care, 1284–92.
  50. Kujala, U. M., et al. (1993), ‘Scoring of patellofemoral disorders’, Arthroscopy: The Journal of Arthroscopic & Related Surgery, 9 (2), 159–63.
  51. Lee, A., et al. (2005), ‘Evaluation of the association between the EQ‐5Dindex (health‐related utility) and body mass index (obesity) in hospital‐treated people with Type 1 diabetes, Type 2 diabetes and with no diagnosed diabetes’, Diabetic Medicine, 22 (11), 1482–6.
  52. Leng, G., et al. (2017), ‘National commitment to shared decision making. The only way to achieve truly person centred care’, British Medical Journal, 2017 (359), 4746.  
  53. Levine, D. W., et al. (1993), ‘A self-administered questionnaire for the assessment of severity of symptoms and functional status in carpal tunnel syndrome’, The Journal of Bone and Joint Surgery. American Volume, 75 (11), 1585–92.
  54. Llywodraeth Cymru (2018), Cymru Iachach: ein Cynllun Iechyd a Gofal Cymdeithasol, <https://llyw.cymru/sites/default/files/publications/2019-04/cymru-iachach-ein-cynllun-iechyd-a-gofal-cymdeithasol.pdf> [Cyrchwyd: 18 Gorffennaf 2019].
  55. Llywodraeth Cymru (2019), Datganiad Ysgrifenedig: Newid y ffin rhwng byrddau iechyd: Pen-y-bont ar Ogwr,<https://llyw.cymru/datganiad-ysgrifenedig-newid-y-ffin-rhwng-byrddau-iechyd-pen-y-bont-ar-ogwr?_ga=2.76078294.2115555057.1562843706-841335728.1541670164> [Cyrchwyd: 11 Gorffennaf 2019].
  56. MI-Cym (2019), Croeso i MI-CYM!,<http://www.micym.org/llais/static/indexCym.html> [Cyrchwyd: 12 Gorffennaf 2019].
  57. Morgan, C. L., et al. (2006), 'Characterization and comparison of health‐related utility in people with diabetes with various single and multiple vascular complications', Diabetic Medicine, 23 (10), 1100–05.
  58. National Institute for Health and Care Excellence (2012), Patient experience in adult NHS services, <https://www.nice.org.uk/guidance/qs15/resources/patient-experience-in-adult-nhs-services-pdf-2098486990789> [Cyrchwyd: 11 Gorffennaf 2019].
  59. National Institute for Health and Care Excellence (2013), Guide to the methods of technology appraisal 2013, <https://www.nice.org.uk/process/pmg9/chapter/the-reference-case> [Cyrchwyd: 11 Gorffennaf 2019].
  60. National Joint Registry (2008), National Joint Registry <http://www.njrcentre.org.uk/njrcentre/default.aspx> [Cyrchwyd: 11 Gorffennaf 2019].
  61. NHS Digital (2019a), Patient Reported Outcome Measures (PROMs) <https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/patient-reported-outcome-measures-proms> [Cyrchwyd: 11 Gorffennaf 2019].
  62. NHS Digital (2019b), PROMs Methodologies <https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/patient-reported-outcome-measures-proms/proms-methodologies#case-mix> [Cyrchwyd: 03 Ionawr 2020].
  63. O'Donnell, L., Virjee J., a Heaton, K. W. (1990), ‘Detection of pseudodiarrhoea by simple clinical assessment of intestinal transit rate’, British Medical Journal, 300 (6722), 439.
  64. O’Connell, S., et al. (2018), ‘Requirements for the collection of electronic PROMS either “in clinic” or “at home” as part of the PROMs, PREMs and effectiveness Programme (PPEP) in Wales: A feasibility study using a generic PROM tool’, Pilot and Feasibility Studies, 4 (1), 90.
  65. Patients Know Best (2019), Patients Know Best: Manage Your Health <https://patientsknowbest.com/> [Cyrchwyd: 23 Rhagfyr 2019].
  66. Prif Swyddog Meddygol Cymru (2019), Gwerthfawrogi ein hiechyd: Adroddiad Blynyddol 2018/19 <https://llyw.cymru/sites/default/files/publications/2019-05/gwerthfawrogi-ein-hiechyd.pdf> [Cyrchwyd: 18 Gorffennaf 2019].
  67. Prifysgol Bangor (2019), LLAIS: Cefnogi Isadeiledd Ymwybyddiaeth Iaith <http://nworth-ctu.bangor.ac.uk/llais/mesurau-iechyd.php.cy> [Cyrchwyd: 12 Gorffennaf 2019].
  68. Quality and Safety Commitee (2010), Health Improvement Patient Outcome (HIPO) Annual Report <http://www.cardiffandvaleuhb.wales.nhs.uk/sitesplus/documents/1143/2%204%20HIPO%20Annual%20Report.pdf> [Cyrchwyd: 11 Gorffennaf 2019].
  69. Reilly, M. C., Zbrozek A. S., a Dukes, E. M. (1993), ‘The validity and reproducibility of a work productivity and activity impairment instrument’, Pharmacoeconomics, 4 (5), 353–65.
  70. Roos, E. M., a Lohmander L. S. (2003), ‘The Knee injury and Osteoarthritis Outcome Score (KOOS): from joint injury to osteoarthritis’, Health and Quality of Life Outcomes, 1 (1), 64.
  71. Rothrock, N. E., Kaiser, K., a Cella D. (2011), ‘Developing a valid patient‐reported outcome measure’, Clinical Pharmacology & Therapeutics, 90 (5), 737–42.
  72. Royal College of Physicians (2019), National Lung Cancer Audit <https://www.rcplondon.ac.uk/projects/national-lung-cancer-audit> [Cyrchwyd: 02 Awst 2019].
  73. Sparrow, J., et al. (2018), 'Cat-PROM5: a brief psychometrically robust self-report questionnaire instrument for cataract surgery', Eye, 32 (4), 796.
  74. Szymanski, K. M., et al. (2010), ‘Development and validation of an abbreviated version of the expanded prostate cancer index composite instrument for measuring health-related quality of life among prostate cancer survivors’, Urology, 76 (5), 1245–50.
  75. Tegner, Y., a Lysholm, J. (1985), 'Rating systems in the evaluation of knee ligament injuries', Clinical Orthopaedics and Related Research,198, 43–9.
  76. The Economist Intelligence Unit (2019), Aneurin Bevan University Health Board, Wales: Putting value-based care into practice <http://vbhcglobalassessment.eiu.com/aneurin-bevan-university-health-board-wales-putting-value-based-care-into-practice/> [Cyrchwyd: 23 Gorffennaf 2019].
  77. UK Government (2014), Mesur y Gymraeg (Cymru) 2011 <http://www.legislation.gov.uk/mwa/2011/1/pdfs/mwa_20110001_we.pdf> [Cyrchwyd: 23 Rhagfyr 2019].
  78. Van Der Wees, P. J., et al. (2014), 'Integrating the use of patient-reported outcomes for both clinical practice and performance measurement: Views of experts from 3 countries', The Milbank Quarterly, 92 (4), 754–75.
  79. Waljee, J. F., et al. (2011), 'Development of a brief, 12-item version of the Michigan Hand Questionnaire', Plastic and Reconstructive Surgery, 128 (1), 208.
  80. Ware Jr, J. E., a Sherbourne, C. D. (1992), ‘The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection’, Medical Care, 473–83.
  81. Weinstein, M., Torrance, G., a McGuire, A. (2009), 'QALYs: the basics', Value in Health, 12, 5–9.
  82. Weldring, T., a Smith, S. (2013), ‘Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMS)’, Health Services Insights, 6, 61–8.
  83. Williams, A., et al. (2013), The Listening Organisation: Ensuring care is person-centred in NHS Wales <http://www.1000livesplus.wales.nhs.uk/sitesplus/documents/1011/1000%20Lives%20Plus%20-%20%27The%20Listening%20Organisation%27%20white%20paper%20WEB.pdf> [Cyrchwyd: 11 Gorffennaf 2019].
  84. Withers, K. L., et al. (2018), ‘Standardising the collection of patient-reported experience measures to facilitate benchmarking and drive service improvement’, Patient Experience Journal, 5 (3), 16–24.