Support available for and perceived priorities of people with polymyalgia rheumatica and giant cell arteritis: results of the PMRGCAuk members’ survey 2017
Tóm tắt
Polymyalgia rheumatica and giant cell arteritis are relatively common, but under research inflammatory rheumatological conditions. This survey aimed to ascertain the matters in which patients feel they need support with these conditions and appraise how the Charity PMRGCAuk currently supports these needs and could do so in the future. PMRGCAuk members (n = 910) were invited to complete an on-line survey. The survey requested the respondent’s history of PMR and or GCA, their perceived priorities for support for people with PMR and or GCA and views on the services already provided by the Charity. A total of 209 people completed the survey. Less than 24% had heard of either PMR or GCA before their diagnosis. Priorities in supporting people with PMR and or GCA included: being on and tapering off glucocorticoids (76.6%), specifically, length of treatment and the risks versus benefits and managing side effects. Respondents generally reported satisfaction with the services currently provided by PMRGCAuk. The support provided by PMRGCAuk is very helpful to members and fills an important gap in provision for people with PMR and or GCA. The areas in which the greatest proportions of participants requested support do not have an evidence base to underpin them. It is incumbent on the research community to address patients’ concerns and provide an evidence base where it is required by those affected.
Tài liệu tham khảo
Gonzalez-Gay MA, Matteson EL, Castaneda S (2017) Polymyalgia rheumatica. Lancet 390(10103):1700–1712. https://doi.org/10.1016/S0140-6736(17)31825-1
Dejaco C, Duftner C, Cimmino MA, Dasgupta B, Salvarani C, Crowson CS, Maradit-Kremers H, Hutchings A, Matteson EL, Schirmer M, International Work Group for PMR, Gca (2011) Definition of remission and relapse in polymyalgia rheumatica: data from a literature search compared with a Delphi-based expert consensus. Ann Rheum Dis 70(3):447–453. https://doi.org/10.1136/ard.2010.133850
Crowson CS, Matteson EL, Myasoedova E, Michet CJ, Ernste FC, Warrington KJ, Davis JM 3rd, Hunder GG, Therneau TM, Gabriel SE (2011) The lifetime risk of adult-onset rheumatoid arthritis and other inflammatory autoimmune rheumatic diseases. Arthritis Rheum 63(3):633–639. https://doi.org/10.1002/art.30155
Barraclough K, Liddell WG, du Toit J, Foy C, Dasgupta B, Thomas M, Hamilton W (2008) Polymyalgia rheumatica in primary care: a cohort study of the diagnostic criteria and outcome. Fam Pract 25(5):328–333. https://doi.org/10.1093/fampra/cmn044
Gilbert K (2014) 7. Polly Wotsit and the giant dragon: the patient's perspective on PMR and GCA. Rheumatology (Oxford, England) 53:i4–i5
Lally L, Forbess L, Hatzis C, Spiera R (2016) Brief report: a prospective open-label phase IIa trial of tocilizumab in the treatment of polymyalgia Rheumatica. Arthritis Rheumatol 68(10):2550–2554. https://doi.org/10.1002/art.39740
Dejaco C, Singh YP, Perel P, Hutchings A, Camellino D, Mackie S, Abril A, Bachta A, Balint P, Barraclough K, Bianconi L, Buttgereit F, Carsons S, Ching D, Cid M, Cimmino M, Diamantopoulos A, Docken W, Duftner C, Fashanu B, Gilbert K, Hildreth P, Hollywood J, Jayne D, Lima M, Maharaj A, Mallen C, Martinez-Taboada V, Maz M, Merry S, Miller J, Mori S, Neill L, Nordborg E, Nott J, Padbury H, Pease C, Salvarani C, Schirmer M, Schmidt W, Spiera R, Tronnier D, Wagner A, Whitlock M, Matteson EL, Dasgupta B, European League Against R, American College of R (2015) 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative. Ann Rheum Dis 74(10):1799–1807. https://doi.org/10.1136/annrheumdis-2015-207492
Stone JH, Tuckwell K, Dimonaco S, Klearman M, Aringer M, Blockmans D, Brouwer E, Cid MC, Dasgupta B, Rech J (2017) Trial of tocilizumab in giant-cell arteritis. N Engl J Med 377(4):317–328
National Institute for Health and Care Excellence (2018) Tocilizumab for treating giant cell arteritis. National Institute for Health and Care Excellence. https://www.nice.org.uk/guidance/ta518/chapter/1-Recommendations. Accessed 2018
HealthUnlocked HealthUnlocked PMRGCAuk. HealthUnlocked. https://healthunlocked.com/pmrgcauk. Accessed 2017
National Institute for Health Research INVOLVE Briefing note six. National Institute for Health Research. http://www.invo.org.uk/posttyperesource/how-to-find-people-to-involve/. Accessed 2017
The King's Fund (2015) Ten priorities for commissioners: Transforming our health care system summary. The King's Fund. https://www.kingsfund.org.uk/publications/articles/transforming-our-health-care-system-ten-priorities-commissioners/summary. Accessed 2018
NHS England Realising the Value programme. NHS England. https://www.england.nhs.uk/ourwork/patient-participation/self-care/value-prog/. Accessed 2018
Office of National Statistics (2017) Statistical bulletin: Internet users in the UK: 2017. Office for National Statistics. https://www.ons.gov.uk/businessindustryandtrade/itandinternetindustry/bulletins/internetusers/2017#recent-internet-use-for-those-aged-65-and-over-is-catching-up-with-younger-age-groups. Accessed 2017
Vaus DD (2014) Administering questionnaires. In: Vaus DD (ed) Surveys in social research. 6th edn. Routledge, London
Office of National Statistics (2017) Statistical bulletin: UK Health Accounts: 2015. Office for National Statistics. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/ukhealthaccounts/2015. Accessed 2017
Buttgereit F, Dejaco C, Matteson EL, Dasgupta B (2016) Polymyalgia Rheumatica and Giant cell arteritis: a systematic review. JAMA 315(22):2442–2458. https://doi.org/10.1001/jama.2016.5444
Dejaco C, Brouwer E, Mason JC, Buttgereit F, Matteson EL, Dasgupta B (2017) Giant cell arteritis and polymyalgia rheumatica: current challenges and opportunities. Nat Rev Rheumatol 13(10):578–592. https://doi.org/10.1038/nrrheum.2017.142
Helliwell T (2016) Polymyalgia rheumatica in primary care: an exploration of the challenges of diagnosis and management using survey and qualitative methods
McClain G, Buchman M (2012) After the diagnosis: how patients react and how to help them cope. Cengage Learning