title: Monitoring clinical quality in rare disease services--experience in England.
abstract: After some well-publicised problems with paediatric cardiac surgery, there has been great interest in England in monitoring clinical quality in specialised medical services. The National Commissioning Group plans, funds and monitors a set of highly specialised services for the National Health Service in England. We have developed systems for monitoring clinical quality that perform two interrelated but distinct functions: performance measurement and performance improvement. The aim is to collect information on all patients seen during each year--a 100% consecutive case series. Generally, there is no conceptual difficulty identifying an appropriate outcome for surgical interventions: the indication for surgery usually defines the outcome to monitor. This is not so for the medical and psychiatric services, where the relevant outcome to monitor is sometimes not obvious. There are a number of problems in interpreting, and acting on, outcome data for rare conditions and treatments. These problems include statistical problems due to small numbers, the need to risk adjust data and coding problems.
authors.affiliation: National Commissioning Group, Southside, 105 Victoria Street, London, UK. tom.kenny@nhs.net
authors.forename: Thomas D
authors.initials: TD
authors.lastname: Kenny
authors.forename: Edmund G
authors.initials: EG
authors.lastname: Jessop
authors.forename: William H
authors.initials: WH
authors.lastname: Gutteridge
mesh_terms: D003695:Delivery of Health Care / Q000458:organization & administration / Q000592:standards*; D004739:England; D005843:Geography; D006801:Humans; D009313:National Health Programs / Q000458:organization & administration / Q000592:standards; D017063:Outcome Assessment, Health Care; D011785:Quality Assurance, Health Care / Q000458:organization & administration / Q000592:standards*; D035583:Rare Diseases / Q000175:diagnosis / Q000628:therapy*; D016019:Survival Analysis
references.citation: Qual Saf Health Care. 2003 Dec;12(6):458-64
references.pmid: 14645763
references.citation: Health Care Manag Sci. 2005 Feb;8(1):61-5
references.pmid: 15782513
references.citation: Br J Neurosurg. 2002 Jun;16(3):211-6
references.pmid: 12201391
references.citation: Health Care Manag Sci. 2001 Dec;4(4):305-18
references.pmid: 11718462
references.citation: Arch Gen Psychiatry. 1989 Nov;46(11):1012-6
references.pmid: 2510699
references.citation: BMJ. 2004 Feb 14;328(7436):375
references.pmid: 14751918
references.citation: Arch Gen Psychiatry. 1989 Nov;46(11):1006-11
references.pmid: 2684084
references.citation: Clin Endocrinol (Oxf). 2007 Feb;66(2):269-75
references.pmid: 17223998
references.citation: Br J Ophthalmol. 2008 Sep;92(9):1211-7
references.pmid: 18511541
references.citation: Eur J Hum Genet. 2007 Dec;15(12):1193-202
references.pmid: 17940554
references.citation: J Pediatr Adolesc Gynecol. 2005 Feb;18(1):39-42
references.pmid: 15749583
references.citation: ANS Adv Nurs Sci. 1993 Sep;16(1):42-51
references.pmid: 8311424
references.citation: Chest. 2000 Jun;117(6):1656-60
references.pmid: 10858398
references.citation: Lancet. 1997 Oct 18;350(9085):1128-30
references.pmid: 9343500
references.citation: J Am Acad Child Adolesc Psychiatry. 1997 Jun;36(6):844-52
references.pmid: 9183141
references.citation: Int J Health Geogr. 2004 Sep 29;3(1):21
references.pmid: 15456514
references.citation: BMJ. 2006 Jul 1;333(7557):19
references.pmid: 16793783
references.citation: Soc Sci Med. 1999 Aug;49(3):425-33
references.pmid: 10414825