Core outcome measurement set for shared decision making in rheumatic and musculoskeletal conditions: A scoping review to identify candidate instruments

Journal article

Naye, Florian, Toupin-April, Karine, de Wit, Maarten, LeBlanc, Annie, Dubois, Olivia, Boonen, Annelies, Barton, Jennifer L., Fraenkel, Liana, Li, Linda C., Stacey, Dawn, March, Lyn, Barber, Claire E.H., Hazlewood, Glen Stewart, Guillemin, Francis, Bartlett, Susan J., Berthelsen, Dorthe B., Mather, Kate, Arnaud, Laurent, Akpabio, Akpabio, Adebajo, Adewale, Schultz, Grayson, Sloan, Victor S., Gill, Tiffany K., Sharma, Saurab, Scholte-Voshaar, Marieke, Caso, Francesco, Nikiphorou, Elena, Nasef, Samah Ismail, Campbell, Willemina, Meara, Alexa, Christensen, Robin, Suarez-Almazor, Maria E., Jull, Janet Elizabeth, Alten, Rieke, Morgan, Esi M., El-Miedany, Yasser, Singh, Jasvinder A., Burt, Jennifer, Jayatilleke, Arundathi, Hmamouchi, Ihsane, Blanco, Francisco J., Fernandez, Anthony P., Mackie, Sarah, Jones, Allyson, Strand, Vibeke, Monti, Sara, Stones, Simon R., Lee, Rebecca R., Nielsen, Sabrina Mai, Evans, Vicki, Srinivasalu, Hemalatha, Gérard, Thomas, Demers, Juliette LeBlanc, Bouchard, Roxanne, Stefan, Théo, Dugas, Michèle, Bergeron, Frédéric, Beaton, Dorcas, Maxwell, Lara J., Tugwell, Peter and Décary, Simon 2023. Core outcome measurement set for shared decision making in rheumatic and musculoskeletal conditions: A scoping review to identify candidate instruments. Seminars in Arthritis and Rheumatism. 65, p. 152344. https://doi.org/10.1016/j.semarthrit.2023.152344
AuthorsNaye, Florian, Toupin-April, Karine, de Wit, Maarten, LeBlanc, Annie, Dubois, Olivia, Boonen, Annelies, Barton, Jennifer L., Fraenkel, Liana, Li, Linda C., Stacey, Dawn, March, Lyn, Barber, Claire E.H., Hazlewood, Glen Stewart, Guillemin, Francis, Bartlett, Susan J., Berthelsen, Dorthe B., Mather, Kate, Arnaud, Laurent, Akpabio, Akpabio, Adebajo, Adewale, Schultz, Grayson, Sloan, Victor S., Gill, Tiffany K., Sharma, Saurab, Scholte-Voshaar, Marieke, Caso, Francesco, Nikiphorou, Elena, Nasef, Samah Ismail, Campbell, Willemina, Meara, Alexa, Christensen, Robin, Suarez-Almazor, Maria E., Jull, Janet Elizabeth, Alten, Rieke, Morgan, Esi M., El-Miedany, Yasser, Singh, Jasvinder A., Burt, Jennifer, Jayatilleke, Arundathi, Hmamouchi, Ihsane, Blanco, Francisco J., Fernandez, Anthony P., Mackie, Sarah, Jones, Allyson, Strand, Vibeke, Monti, Sara, Stones, Simon R., Lee, Rebecca R., Nielsen, Sabrina Mai, Evans, Vicki, Srinivasalu, Hemalatha, Gérard, Thomas, Demers, Juliette LeBlanc, Bouchard, Roxanne, Stefan, Théo, Dugas, Michèle, Bergeron, Frédéric, Beaton, Dorcas, Maxwell, Lara J., Tugwell, Peter and Décary, Simon
Abstract

OBJECTIVES
Shared decision making (SDM) is a central tenet in rheumatic and musculoskeletal care. The lack of standardization regarding SDM instruments and outcomes in clinical trials threatens the comparative effectiveness of interventions. The Outcome Measures in Rheumatology (OMERACT) SDM Working Group is developing a Core Outcome Set for trials of SDM interventions in rheumatology and musculoskeletal health. The working group reached consensus on a Core Outcome Domain Set in 2020. The next step is to develop a Core Outcome Measurement Set through the OMERACT Filter 2.2.

METHODS
We conducted a scoping review (PRISMA-ScR) to identify candidate instruments for Powered by Editorial Manager® and ProduXion Manager® from Aries Systems Corporation the OMERACT Filter 2.2 We systematically reviewed five databases (Ovid MEDLINE®, Embase, Cochrane Library, CINAHL and Web of Science). An information specialist designed search strategies to identify all measurement instruments used in SDM studies in adults or children living with rheumatic or musculoskeletal diseases or their important others. Paired reviewers independently screened titles, abstracts, and full text articles. We extracted characteristics of all candidate instruments (e.g., measured construct, measurement properties). We classified candidate instruments and summarized evidence gaps with an adapted version of the Summary of Measurement Properties (SOMP) table.

RESULTS
We found 14,464 citations, read 239 full text articles, and included 99 eligible studies. We identified 220 potential candidate instruments. The five most used measurement instruments were the Decisional Conflict Scale (traditional and low literacy versions) (n=38), the Hip/Knee-Decision Quality Instrument (n=20), the Decision Regret Scale (n=9), the Preparation for Decision Making Scale (n=8), and the CollaboRATE (n=8). Only 44 candidate instruments (20%) had any measurement properties reported by the included studies. Of these instruments, only 57% matched with at least one of the 7-criteria adapted SOMP table.

CONCLUSION
We identified 220 candidate instruments used in the SDM literature among people with rheumatic and musculoskeletal diseases. Our classification of instruments showed evidence gaps and inconsistent reporting of measurement properties. The next steps for the OMERACT SDM Working Group are to match candidate instruments with Core Domains, assess feasibility and review validation studies of measurement instruments in rheumatic diseases or other conditions. Development and validation of new instruments may be required for some Core Domains.

KeywordsShared decision making; Rheumatic diseases; Musculoskeletal diseases; Measurement instruments; Core Outcome Measurement Set
Year2023
JournalSeminars in Arthritis and Rheumatism
Journal citation65, p. 152344
PublisherElsevier
ISSN0049-0172
Digital Object Identifier (DOI)https://doi.org/10.1016/j.semarthrit.2023.152344
Official URLhttps://www.sciencedirect.com/science/article/pii/S0049017223001865?via%3Dihub
FunderCanadian Institutes of Health Research
Publication dates
Online16 Dec 2023
PrintApr 2024
Publication process dates
Deposited20 Dec 2023
Output statusPublished
Page range152344
Permalink -

https://repository.canterbury.ac.uk/item/96q33/core-outcome-measurement-set-for-shared-decision-making-in-rheumatic-and-musculoskeletal-conditions-a-scoping-review-to-identify-candidate-instruments

  • 54
    total views
  • 0
    total downloads
  • 1
    views this month
  • 0
    downloads this month

Export as

Related outputs

Development of a core domain set for nailfold capillaroscopy reporting.
El Miedany, Yasser, Ismail, Sherif, Wadie, Mary, Müller-Ladneru, Ulf, Giacomelli, Roberto, Liakouli, Vasiliki, Hermann, Walter, Fathy, Nihal, El Gaafary, Maha, Fouad, Nermin A, Saber, Sally and Abu-Zaid, Mohamed Hassan 2024. Development of a core domain set for nailfold capillaroscopy reporting. Reumatologia clinica. 20 (7), pp. 345-352. https://doi.org/10.1016/j.reumae.2024.07.003
Defining criteria for disease activity states in systemic juvenile idiopathic arthritis based on the systemic Juvenile Arthritis Disease Activity Score
Rosina, Silvia, Rebollo‐Gimenez, Ana I., Tarantola, Letizia, Pistorio, Angela, Vyzhga, Y., El Miedany, Yasser, Lotfy, Hala M., Abu‐Shady, Hend, Eissa, M., Osman, Naglaa S., Hassan, Waleed, Mahgoub, Marwa Y., Fouad, Nermeen A., Mosa, D., Adel, Yasmin, Mohamed, Sheren E. M., Radwan, Ahmed R., Abu-Zaid, M., Tabra, Samar A. A., Shalaby, Radwa H., Nasef, S., Khubchandani, Raju, Khan, A., Maldar, Naziya P., Ozen, S., Bayindir, Yagmur, Alsuweiti, Motasem, Alzyoud, Raed, Almaaitah, Hiba, Vilaiyuk, Soamarat, Lerkvaleekul, Butsabong, Alexeeva, Ekaterina, Dvoryakovskaya, Tatyana, Kriulin, Ivan, Bracaglia, C., Pardeo, M., De Benedetti, F., Licciardi, F., Montin, Davide, Robasto, Francesca, Minoia, F., Filocamo, Giovanni, Rossano, Martina, Simonini, Gabriele, Marrani, Edoardo, Abu‐Rumeleih, S., Kostik, M., Belozerov, Konstantin E., Pal, P., Bathia, Jigna N., Katsicas, María M., Villarreal, Giselle, Marino, Achille, Costi, Stefania, Sztajnbok, Flavio, Silva, Rodrigo M., Maggio, Maria C., El‐Ghoneimy, Dalia H., El Owaidy, R., Civino, Adele, Diomeda, Federico, Al‐Mayouf, Sulaiman M., Al‐Sofyani, Fuad, Dāvidsone, Zane, Patrone, Elisa, Saad‐Magalhães, Claudia, Consolaro, A. and Ravelli, A. 2024. Defining criteria for disease activity states in systemic juvenile idiopathic arthritis based on the systemic Juvenile Arthritis Disease Activity Score. Arthritis & Rheumatology. https://doi.org/10.1002/art.42865
Consensus on the definitions and descriptions of the domains of the OMERACT Core Outcome Set for shared decision making interventions in rheumatology trials
Décary, Simon, de Wit, Maarten, Naye, Florian, Barton, Jennifer L., Fraenkel, Liana, Li, Linda C., Brooks, Peter, Stacey, Dawn, Maxwell, Lara J., Campbell, Willemina, Hofstetter, Cathie, Voshaar, Marieke, Meara, Alexa, Christensen, Robin, Boonen, Annelies, Suarez-Almazor, Maria E., Meade, Tanya, March, Lyn, Jull, Janet Elizabeth, Alten, Rieke, Morgan, Esi M., Hazlewood, Glen, Barber, Claire, Guillemin, Francis, El-Miedany, Yasser, Mittoo, Shikha, Robertson, Tiffany Westrich, Bartlett, Susan J., Singh, Jasvinder A., Mannion, Melissa, Nasef, Samah Ismail, Boel, Anne, Adebajo, Adewale, Arnaud, Laurent, Gill, Tiffany K., Moholt, Ellen, Burt, Jennifer, Jayatilleke, Arundathi, Hmamouchi, Ihsane, Berthelsen, Dorthe B, Blanco, Francisco J., Mather, Kate, Maharaj, Ajesh, Sharma, Saurab, Caso, Francesco, Beaton, Dorcas, Shea, Beverly, Fong, Christopher, Fernandez, Anthony P., Mackie, Sarah, Nikiphorou, Elena, Jones, Allyson, Greer-Smith, Regina, Sloan, Victor S., Akpabio, Akpabio, Strand, Vibeke, Lee, Rebecca R., Umaefulam, Valerie, Monti, Sara, Abaza, Nouran, Schultz, Grayson, Stones, Simon, Gossec, Laure, Nielsen, Sabrina Mai, Cavallo, Sabrina, Srinivasalu, Hemalatha, Constien, Deb, Evans, Vicki, Tugwell, Peter and Toupin-April, K. 2024. Consensus on the definitions and descriptions of the domains of the OMERACT Core Outcome Set for shared decision making interventions in rheumatology trials. Seminars in Arthritis and Rheumatism. 65, p. 152381. https://doi.org/10.1016/j.semarthrit.2024.152381
Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure
El Miedany, Y., El Gaafary, M, Toth, M, Palmer, D., Ali, Ayman, Bahlas, S., Mahran, S., Hassan, W., Abu-Zaid, M H, Saber, S. and Elwakil, W. 2023. Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure. Seminars in Arthritis and Rheumatism. 63, p. 152285. https://doi.org/10.1016/j.semarthrit.2023.152285
Prevalence of glucocorticoid-induced osteoporosis among rheumatology patients in Africa: a systematic review and meta-analysis.
Hmamouchi, I., Paruk, Farhanah, Tabra, Samar, Maatallah, Kaouther, Bouziane, Amal, Abouqal, Redouane, El Maidany, Yasser, El Maghraoui, Abdellah and Kalla, Asgar Ali 2023. Prevalence of glucocorticoid-induced osteoporosis among rheumatology patients in Africa: a systematic review and meta-analysis. Archives of Osteoporosis. 18 (1), p. 59. https://doi.org/10.1007/s11657-023-01246-6
Consensus evidence-based clinical practice recommendations for the diagnosis and treat-to-target management of osteoporosis in chronic kidney disease stages G4-G5D and post-transplantation: An initiative of Egyptian Academy of Bone Health
El Miedany, Yasser, Gadallah, Naglaa Ali, Sarhan, Eman, Toth, Mathias, Hasab El Naby, Mona Mansour, Elwy, Mohamed, Ganeb, Sahar, El Gaafary, Maha, Mortada, Mohamed, Nasef, Samah Ismail, Mohannad, Nevine, Mahran, Safaa Ali, Abu-Zaid, Mohammed Hassan, Eissa, Mervat, Hassan, Waleed, Medhat, Basma M, Ghaleb, Rasha, Tabra, Samar Abdelhamed, Saber, Heba Gamal, Ibrahim, Rehab Ali, Saber, Sally and Galal, Salwa 2022. Consensus evidence-based clinical practice recommendations for the diagnosis and treat-to-target management of osteoporosis in chronic kidney disease stages G4-G5D and post-transplantation: An initiative of Egyptian Academy of Bone Health. Kidney Diseases. 8 (5), pp. 392-407. https://doi.org/10.1159/000526492
001 Egyptian consensus-based recommendations for the diagnosis and targeted management of Kawasaki disease. An initiative by the Egyptian College of Pediatric Rheumatology
El Miedany, Y, Lotfy, H, Salah, S, Abu-Zaid, M. H, Mohamed, S. S, Esam Maher, S, El Gaafary, M, Abdulhady, H, Hassan, W. A, Mortada, M, Amer, Y, Osman, N. S, Medhat, B. M, Farag, Y, Eissa, M, Radwan, A, Nasef, S. I, Elkaraly, N. E, El-Shanawany, Amira T, El Mikkawy, D, Mosa, D. M, El Deriny, G, Fouad, N. A and Tabra, S. A 2022. 001 Egyptian consensus-based recommendations for the diagnosis and targeted management of Kawasaki disease. An initiative by the Egyptian College of Pediatric Rheumatology. Rheumatology. 61 (Supplement_2). https://doi.org/10.1093/rheumatology/keac495.001
43 Egyptian evidence-based consensus recommendations for diagnosis and targeted management of childhood-onset systemic lupus erythematosus. An initiative by the Egyptian College of Pediatric Rheumatology
Lotfy, H, El Miedany, Y, Salah, S, Tabra, S. A, Salaby, R. A, Amer, Y, Adel, Y, Osman, N. S, Medhat, B. M, El Gaafary, M, Abdulhady, H, Hassan, W. A, Farag, Y, Eissa, M, Maher, S. Esam, Radwan, A, El-Shanawany, Amira T, El Mikkawy, D, Mosa, D. M, El Deriny, G, Mortada, M, Fouad, N. A, Nasef, S. I, Elkaraly, N. E, Mohamed, S. S and Abu-Zaid, M. H 2022. 43 Egyptian evidence-based consensus recommendations for diagnosis and targeted management of childhood-onset systemic lupus erythematosus. An initiative by the Egyptian College of Pediatric Rheumatology. Rheumatology. 61 (Supplement_2). https://doi.org/10.1093/rheumatology/keac496.039
Regenerative medicine : Challenges and opportunities
Plummer, S. and El Miedany, Y. 2022. Regenerative medicine : Challenges and opportunities. in: El Miedany, Y. (ed.) Musculoskeletal Ultrasound-Guided Regenerative Medicine Springer. pp. 539 -548
Rheumatology-led pregnancy clinic: patient-centred approach
El Miedany, Y. and Palmer, D. 2021. Rheumatology-led pregnancy clinic: patient-centred approach. Clinical Rheumatology. 40 (10), pp. 3875-3882. https://doi.org/10.1007/s10067-021-05690-y
Consensus evidence-based recommendations for treat-to-target management of immunoglobulin A vasculitis
Abu-Zaid, M., Salah S., Lotfy H., El Gaafary, M., Abdulhady, H., Tabra, S., Salah, H., Farag, Y., Eissa, M., Maher, S., Radwan, A., El-Shanawany, A., Medhat, B., El Mikkawy, D., Mosa D., El Deriny, G., Mortada M., Osman, N., Fouad, N., Elkaraly, N., Mohamed, S., Hassan, W., Amer, Y., Nasef, S. and El Miedany, Y. 2021. Consensus evidence-based recommendations for treat-to-target management of immunoglobulin A vasculitis. Therapeutic Advances in Musculoskeletal Disease. https://doi.org/10.1177/1759720X211059610
Egyptian consensus on treat-to-target approach for osteoporosis: a clinical practice guideline from the Egyptian Academy of bone health and metabolic bone diseases
El Miedany, Y., Abu-Zaid, M., El Gaafary, M., El Naby, M., Fathi N., Saber H., Hassan, W., Eissa M., Mohannad N., Khaled H., Mortada M., Nasef S., Galal, S., Ghaleb R., Tabra S., Mohamed S., Medhat B., Aly H., Elolemy G., Fouad N., Ganeb S., Adel Y., Ibrahim M., Farouk O. and Gadallah N. 2021. Egyptian consensus on treat-to-target approach for osteoporosis: a clinical practice guideline from the Egyptian Academy of bone health and metabolic bone diseases. Egyptian Rheumatology and Rehabilitation. 48 (5). https://doi.org/10.1186/s43166-020-00056-9
Consensus evidence-based clinical practice guidelines for the diagnosis and treat-to-target management of osteoporosis in Africa: an initiative by the African Society of Bone Health and Metabolic Bone Diseases.
El Miedany, Y., Paruk, F., Kalla, A., Adebajo, A., El Gaafary, M., El Maghraoui, A., Ngandeu, M., Dey, D., Gadallah, Naglaa, Elwy, Mohamed, Moosajee, F., Abu-Zaid, M., Galal, S., Miladi, S., Hassan, W., Fadlelmola, Abubaker and Saber, S. 2021. Consensus evidence-based clinical practice guidelines for the diagnosis and treat-to-target management of osteoporosis in Africa: an initiative by the African Society of Bone Health and Metabolic Bone Diseases. Archives of Osteoporosis. 16 (1), p. 176. https://doi.org/10.1007/s11657-021-01035-z
Is there a potential dual effect of denosumab for treatment of osteoporosis and sarcopenia?
Miedany, Yasser El, Gaafary, Maha El, Toth, Mathias, Hegazi, Mohamed Osama, Aroussy, Nadia El, Hassan, Waleed, Almedany, Samah, Nasr, Annie, Bahlas, Sami, Galal, S. and Egyptian Academy of Bone Health, Metabolic Bone Diseases 2021. Is there a potential dual effect of denosumab for treatment of osteoporosis and sarcopenia? Clinical Rheumatology. https://doi.org/10.1007/s10067-021-05757-w
Endorsement of the OMERACT core domain set for shared decision making interventions in rheumatology trials: Results from a multi-stepped consensus-building approach.
Toupin-April, K., Décary, S., de Wit, M., Meara, A., Barton, J. L., Fraenkel, L., Li, L. C., Brooks, P., Shea, B., Stacey, D., Légaré, F., Lydiatt, A., Hofstetter, C., Proulx, L., Christensen, R., Voshaar, M., Suarez-Almazor, M. E, Boonen, A., Meade, T., March, L., Jull, J. E., Campbell, W., Alten, R., Morgan, E.M., Kelly, A., Kaufman, J., Hill, S., Maxwell, L. J., Guillemin, F., Beaton, D., El-Miedany, Y., Mittoo, S., Westrich Robertson, T., Bartlett, S. J., Singh, J. A., Mannion, M., Nasef, S. I., de Souza, S., Boel, A., Adebajo, A., Arnaud, L., Gill, T. K., Moholt, E., Burt, J., Jayatilleke, A., Hmamouchi, I., Carrott, D., Blanco, F. J., Mather, K., Maharaj, A., Sharma, S., Caso, F., Fong, C., Fernandez, A. P., Mackie, S., Nikiphorou, E., Jones, A., Greer-Smith, R., Sloan, V. S., Akpabio, A., Strand, V., Umaefulam, V., Monti, S., Melburn, C., Abaza, N., Schultz, K., Stones, S., Kiwalkar, S., Srinivasalu, H., Constien, D., King, L. K. and Tugwell, P. 2021. Endorsement of the OMERACT core domain set for shared decision making interventions in rheumatology trials: Results from a multi-stepped consensus-building approach. Seminars in Arthritis and Rheumatism. 51 (3). https://doi.org/10.1016/j.semarthrit.2021.03.017
Rheumatology-led pregnancy clinic: enhancing the care of women with rheumatic diseases during pregnancy
El Miedany, Y. and Palmer, D. 2020. Rheumatology-led pregnancy clinic: enhancing the care of women with rheumatic diseases during pregnancy. Clinical Rheumatology. 39 (12), pp. 3593-3601. https://doi.org/10.1007/s10067-020-05173-6
Widespread lytic lesions—A metastatic or vasculitic process?
Fahd Khan, Srinivasan Srirangan, Yasser El Miedany and Sanjeev Madaan 2016. Widespread lytic lesions—A metastatic or vasculitic process? International Journal of Surgery Case Reports. 18, pp. 18-20. https://doi.org/10.1016/j.ijscr.2015.11.023