International Consortium for Health Outcome Measurement Set of Outcomes That Matter to People Living With Inflammatory Arthritis: Consensus From an International Working Group

被引:50
|
作者
Oude Voshaar, Martijn A. H. [1 ]
Das Gupta, Zofia [2 ]
Bijlsma, Johannes W. J. [3 ]
Boonen, Annelies [4 ]
Chau, Jeffrey [5 ]
Courvoisier, Delphine S. [6 ,7 ]
Curtis, Jeffrey R. [8 ]
Ellis, Benjamin [9 ]
Ernestam, Sofia [10 ]
Gossec, Laure [11 ,12 ]
Hale, Christine [13 ]
Hornjeff, Jennifer [14 ]
Leung, Katy Y. Y. [15 ]
Lidar, Merav [16 ]
Mease, Phillip [17 ]
Michaud, Kaleb [18 ,19 ]
Mody, Girish M. [20 ]
Ndosi, Mwidimi [21 ]
Opava, Christina H. [10 ]
Pinheiro, Geraldo R. C. [22 ]
Salt, Matthew [2 ]
Soriano, Enrique R. [23 ]
Taylor, William J. [24 ]
Voshaar, Maria J. H. [1 ]
Weel, Angelique E. A. M. [25 ]
de Wit, Maarten [26 ]
Wulffraat, Nico [27 ]
van de Laar, Mart A. F. J. [1 ,2 ]
Vonkeman, Harald E. [1 ,2 ]
机构
[1] Univ Twente, Enschede, Netherlands
[2] Int Consortium Hlth Outcomes Measurement, London, England
[3] Univ Med Ctr Utrecht, Utrecht, Netherlands
[4] Maastricht Univ, Med Ctr, Maastricht, Netherlands
[5] Hong Kong Psoriat Arthrit Assoc, Hong Kong, Peoples R China
[6] Univ Hosp Geneva, Geneva, Switzerland
[7] Univ Geneva, Geneva, Switzerland
[8] Univ Alabama Birmingham, Birmingham, AL USA
[9] Imperial Coll Healthcare NHS Trust, London, England
[10] Karolinska Inst, Stockholm, Sweden
[11] Sorbonne Univ, Paris, France
[12] Hop La Pitie Salpetriere, AP HP, Paris, France
[13] Lockton Dunning Benefits, Dallas, TX USA
[14] Columbia Univ, Med Ctr, New York, NY USA
[15] Duke NUS Med Sch, Singapore Gen Hosp, Singapore, Singapore
[16] Sheba Med Ctr, Tel Hashomer, Israel
[17] Univ Washington, Providence St Joseph Hlth Syst, Seattle, WA 98195 USA
[18] Univ Nebraska Med Ctr, Omaha, NE USA
[19] Natl Databank Rheumat Dis, Wichita, KS USA
[20] Univ KwaZulu Natal, Durban, South Africa
[21] Univ West England, Bristol, Avon, England
[22] Univ Estado Rio de Janeiro, Rio De Janeiro, Brazil
[23] Inst Univ Hosp Italiano Buenos Aires, Buenos Aires, DF, Argentina
[24] Univ Otago, Wellington, New Zealand
[25] Maasstad Hosp, Rotterdam, Netherlands
[26] Vrije Univ Amsterdam Med Ctr, Amsterdam Publ Hlth, Amsterdam, Netherlands
[27] Wilhelmina Childrens Hosp, Utrecht, Netherlands
关键词
PATIENT-CENTERED OUTCOMES; TREATING RHEUMATOID-ARTHRITIS; SYSTEMATIC LITERATURE SEARCH; STANDARD SET; CORE SET; DISEASE; RECOMMENDATIONS; MANAGEMENT; QUALITY; CANCER;
D O I
10.1002/acr.23799
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Objective The implementation of value-based health care in inflammatory arthritis requires a standardized set of modifiable outcomes and risk-adjustment variables that is feasible to implement worldwide. Methods The International Consortium for Health Outcomes Measurement (ICHOM) assembled a multidisciplinary working group that consisted of 24 experts from 6 continents, including 6 patient representatives, to develop a standard set of outcomes for inflammatory arthritis. The process followed a structured approach, using a modified Delphi process to reach consensus on the following decision areas: conditions covered by the set, outcome domains, outcome measures, and risk-adjustment variables. Consensus in areas 2 to 4 were supported by systematic literature reviews and consultation of experts. Results The ICHOM Inflammatory Arthritis Standard Set covers patients with rheumatoid arthritis (RA), axial spondyloarthritis, psoriatic arthritis, and juvenile idiopathic arthritis (JIA). We recommend that outcomes regarding pain, fatigue, activity limitations, overall physical and mental health impact, work/school/housework ability and productivity, disease activity, and serious adverse events be collected at least annually. Validated measures for patient-reported outcomes were endorsed and linked to common reporting metrics. Age, sex at birth, education level, smoking status, comorbidities, time since diagnosis, and rheumatoid factor and anti-citrullinated protein antibody lab testing for RA and JIA should be collected as risk-adjustment variables. Conclusion We present the ICHOM inflammatory arthritis Standard Set of outcomes, which enables health care providers to implement the value-based health care framework and compare outcomes that are important to patients with inflammatory arthritis.
引用
收藏
页码:1556 / 1565
页数:10
相关论文
共 50 条
  • [31] International patient and physician consensus on a psoriatic arthritis core outcome set for clinical trials
    Orbai, Ana-Maria
    de Wit, Maarten
    Mease, Philip
    Shea, Judy A.
    Gossec, Laure
    Leung, Ying Ying
    Tillett, William
    Elmamoun, Musaab
    Duffin, Kristina Callis
    Campbell, Willemina
    Christensen, Robin
    Coates, Laura
    Dures, Emma
    Eder, Lihi
    FitzGerald, Oliver
    Gladman, Dafna
    Goel, Niti
    Grieb, Suzanne Dolwick
    Hewlett, Sarah
    Hoejgaard, Pil
    Kalyoncu, Umut
    Lindsay, Chris
    McHugh, Neil
    Shea, Bev
    Steinkoenig, Ingrid
    Strand, Vibeke
    Ogdie, Alexis
    ANNALS OF THE RHEUMATIC DISEASES, 2017, 76 (04) : 673 - 680
  • [32] Rasch Analysis of Patient- and Parent-Reported Outcome Measures in the International Consortium for Health Outcomes Measurement Standard Set for Cleft Lip and Palate
    Apon, Inge
    van Leeuwen, Nikki
    Allori, Alexander C.
    Rogers-Vizena, Carolyn R.
    Koudstaal, Maarten J.
    Wolvius, Eppo B.
    Cano, Stefan J.
    Klassen, Anne F.
    Versnel, Sarah L.
    VALUE IN HEALTH, 2021, 24 (03) : 404 - 412
  • [33] Health-related quality of life 90 days after stroke assessed by the International Consortium for Health Outcome Measurement standard set
    Rimmele, D. L.
    Lebherz, L.
    Frese, M.
    Appelbohm, H.
    Bartz, H. -J.
    Kriston, L.
    Gerloff, C.
    Haerter, M.
    Thomalla, G.
    EUROPEAN JOURNAL OF NEUROLOGY, 2020, 27 (12) : 2508 - 2516
  • [34] Outcome reporting in brief intervention trials: Alcohol' (ORBITAL) core outcome set: from international consensus to international use?
    Shorter, Gillian
    Bray, Jeremy
    Heather, Nick
    Berman, Anne H.
    Giles, Emma L.
    Clarke, Mike
    Barbosa, Carolina
    O'Donnell, Amy
    Holloway, Aisha
    Riper, Heleen
    Daeppen, Jean-Bernard
    Monteiro, Maristela G.
    Saitz, Richard
    McNeely, Jennifer
    McKnight-Eily, Lela
    Cowell, Alex
    Toner, Paul
    Newbury-Birch, Dorothy
    ADDICTION SCIENCE & CLINICAL PRACTICE, 2022, 17 (SUPPL 1):
  • [35] Rosacea - global diversity and optimized outcome: proposed international consensus from the Rosacea International Expert Group
    Elewski, B. E.
    Draelos, Z.
    Dreno, B.
    Jansen, T.
    Layton, A.
    Picardo, M.
    JOURNAL OF THE EUROPEAN ACADEMY OF DERMATOLOGY AND VENEREOLOGY, 2011, 25 (02) : 188 - 200
  • [36] A Standard Set of Value-Based Patient-Centered Outcomes for Breast Cancer The International Consortium for Health Outcomes Measurement (ICHOM) Initiative
    Ong, Wee Loon
    Schouwenburg, Maartje G.
    van Bommel, Annelotte C. M.
    Stowell, Caleb
    Allison, Kim H.
    Benn, Karen E.
    Browne, John P.
    Cooter, Rodney D.
    Delaney, Geoff P.
    Duhoux, Francois P.
    Ganz, Patricia A.
    Hancock, Patricia
    Jagsi, Reshma
    Knaul, Felicia M.
    Knip, Anne M.
    Koppert, Linetta B.
    Kuerer, HenryM.
    McLaughin, Sarah
    Mureau, Marc A. M.
    Partridge, Ann H.
    Reid, Dereesa Purtell
    Sheeran, Lisa
    Smith, Thomas J.
    Stoutjesdijk, Mark J.
    Peeters, Marie Jeanne T. F. D. Vrancken
    Wengstrom, Yvonne
    Yip, Cheng-Har
    Saunders, Christobel
    JAMA ONCOLOGY, 2017, 3 (05) : 677 - 685
  • [37] Fracture healing: a consensus report from the International Osteoporosis Foundation Fracture Working Group
    S. L. Silverman
    E. S. Kupperman
    S. V. Bukata
    Osteoporosis International, 2016, 27 : 2197 - 2206
  • [38] Fracture healing: a consensus report from the International Osteoporosis Foundation Fracture Working Group
    Silverman, S. L.
    Kupperman, E. S.
    Bukata, S. V.
    OSTEOPOROSIS INTERNATIONAL, 2016, 27 (07) : 2197 - 2206
  • [39] Beyond public health genomics: proposals from an international working group
    Boccia, Stefania
    Mc Kee, Martin
    Adany, Roza
    Boffetta, Paolo
    Burton, Hilary
    Cambon-Thomsen, Anne
    Cornel, Martina C.
    Gray, Muir
    Jani, Anant
    Knoppers, Bartha Maria
    Khoury, Muin J.
    Meslin, Eric M.
    Van Duijn, Cornelia M.
    Villari, Paolo
    Zimmern, Ron
    Cesario, Alfredo
    Puggina, Anna
    Colotto, Marco
    Ricciardi, Walter
    EUROPEAN JOURNAL OF PUBLIC HEALTH, 2014, 24 (06): : 877 - 879
  • [40] Which outcomes are most important to measure in patients with COVID-19 and how and when should these be measured? Development of an international standard set of outcomes measures for clinical use in patients with COVID-19: a report of the International Consortium for Health Outcomes Measurement (ICHOM) COVID-19 Working Group
    Seligman, William H.
    Fialho, Luz
    Sillett, Nick
    Nielsen, Christina
    Baloch, Farhala M.
    Collis, Philip
    Demedts, Ingel K. M.
    Fleck, Marcelo P.
    Floriani, Maiara A.
    Gabriel, Lucinda E. K.
    Gagnier, Joel J.
    Keetharuth, Anju
    Londral, Ana
    Ludwig, Ingvar I. L.
    Lumbreras, Carlos
    Moscoso Daza, Alejandro
    Muhammad, Nasreen
    Nader Bastos, Gisele A.
    Owen, Christine W.
    Powers, John H.
    Russell, Anne-Marie
    Smith, Michaela K.
    Wang, Tracy Y-P
    Wong, Evan K.
    Woodhouse, Douglas C.
    Zimlichman, Eyal
    Brinkman, Kees
    BMJ OPEN, 2021, 11 (11):