Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives

Bethan Jones; Sarah Bennett; Ingrid Larsson; Heidi Zangi; Carina Boström; Kristien Van der Elst; Françoise Fayet; Mie Fusama; María Del Carmen Herrero Manso; Juliana Rachel Hoeper; Marja Leena Kukkurainen; Suet Kei Kwok; Elsa Frãzao-Mateus; Patricia Minnock; Tiziana Nava; Milena Pavic Nikolic; Jette Primdahl; Roopa Rawat; Mareen Schoenfelder; Matylda Sierakowska; Marieke Voshaar; Edgar Wammervold; Astrid van Tubergen; Mwidimi Ndosi

doi:10.1136/rmdopen-2022-002256

Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives

Bethan Jones
, Sarah Bennett
, Ingrid Larsson
, Heidi Zangi
, Carina Boström
, Kristien Van der Elst
, Françoise Fayet
, Mie Fusama
, María Del Carmen Herrero Manso
, Juliana Rachel Hoeper
, Marja Leena Kukkurainen
, Suet Kei Kwok
, Elsa Frãzao-Mateus
, Patricia Minnock
, Tiziana Nava
, Milena Pavic Nikolic
, Jette Primdahl
, Roopa Rawat
, Mareen Schoenfelder
, Matylda Sierakowska

Marieke Voshaar, Edgar Wammervold, Astrid van Tubergen, Mwidimi Ndosi

Bristol Medical School (THS)

Research output: Contribution to journal › Article (Academic Journal) › peer-review

12 Citations (Scopus)

64 Downloads (Pure)

Abstract

OBJECTIVES: To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA).

METHODS: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories.

RESULTS: The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE.

CONCLUSION: The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

Original language	English
Article number	e002256
Journal	RMD Open
Volume	8
Issue number	1
DOIs	https://doi.org/10.1136/rmdopen-2022-002256
Publication status	Published - 22 Apr 2022

Bibliographical note

© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Funding Information:
Competing interests All authors have completed the ICMJE form for Competing Interests Disclosure and report a research grant from European Alliance of Associations for Rheumatology (EULAR) during the conduct of the study; SB and MN have received speaking fees from CCIS – The Conference Company for speaking at the Irish Rheumatology Nurses Forum meeting. MF reports consulting fees from Janssens Pharmaceuticals, and speaking fees from Janssen pharmaceuticals, Pfizer Inc, Ono Pharmaceuticals, Bristol Myers Squibb, Chugai Pharmaceuticals and Abbvie, all outside the submitted work. BJ reports personal honoraria from Lily UK for speaking at an Expert Webinar, outside the submitted work. EM reports Consulting fees from Boehringer Ingelheim Portugal and LPCDR received grants from Abbvie, Novartis, Pfizer, Lilly Portugal, Amgen Biofarmacêutica, Grünenthal SA, MSD, Medac and from A. Menarini Portugal - Farmacêutica, SA; and support for attending meetings from Pfizer, Lilly Portugal and Grünenthal GmbH. MV reports an educational grant from Pfizer for PhD study, outside the submitted work. IL, HZ, CB, KVdE, FF, MdCHM, JH, MLK, SKK, PM, TN, MPN, JP, RR, MS, MS, EW and AvT report no conflicts of interest. No financial relationships with any organisations that might have an interest in the submitted work in the previous 36 months; no other relationships or activities that could appear to have influenced the submitted work.

Publisher Copyright:
© Author(s) (or their employer(s)) 2022.

Keywords

Arthritis
health services research
patient care team
qualitative research
rehabilitation

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Jones, B., Bennett, S., Larsson, I., Zangi, H., Boström, C., Van der Elst, K., Fayet, F., Fusama, M., Herrero Manso, M. D. C., Hoeper, J. R., Kukkurainen, M. L., Kwok, S. K., Frãzao-Mateus, E., Minnock, P., Nava, T., Pavic Nikolic, M., Primdahl, J., Rawat, R., Schoenfelder, M., ... Ndosi, M. (2022). Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives. RMD Open, 8(1), Article e002256. https://doi.org/10.1136/rmdopen-2022-002256

@article{5e0a922e274349569657a46310897227,

title = "Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives",

abstract = "OBJECTIVES: To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA).METHODS: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories.RESULTS: The sample comprised 2779 participants (79\% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE.CONCLUSION: The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.",

keywords = "Arthritis, health services research, patient care team, qualitative research, rehabilitation",

author = "Bethan Jones and Sarah Bennett and Ingrid Larsson and Heidi Zangi and Carina Bostr{\"o}m and \{Van der Elst\}, Kristien and Fran{\c c}oise Fayet and Mie Fusama and \{Herrero Manso\}, \{Mar{\'i}a Del Carmen\} and Hoeper, \{Juliana Rachel\} and Kukkurainen, \{Marja Leena\} and Kwok, \{Suet Kei\} and Elsa Fr{\~a}zao-Mateus and Patricia Minnock and Tiziana Nava and \{Pavic Nikolic\}, Milena and Jette Primdahl and Roopa Rawat and Mareen Schoenfelder and Matylda Sierakowska and Marieke Voshaar and Edgar Wammervold and \{van Tubergen\}, Astrid and Mwidimi Ndosi",

note = "{\textcopyright} Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. Funding Information: Competing interests All authors have completed the ICMJE form for Competing Interests Disclosure and report a research grant from European Alliance of Associations for Rheumatology (EULAR) during the conduct of the study; SB and MN have received speaking fees from CCIS {\textendash} The Conference Company for speaking at the Irish Rheumatology Nurses Forum meeting. MF reports consulting fees from Janssens Pharmaceuticals, and speaking fees from Janssen pharmaceuticals, Pfizer Inc, Ono Pharmaceuticals, Bristol Myers Squibb, Chugai Pharmaceuticals and Abbvie, all outside the submitted work. BJ reports personal honoraria from Lily UK for speaking at an Expert Webinar, outside the submitted work. EM reports Consulting fees from Boehringer Ingelheim Portugal and LPCDR received grants from Abbvie, Novartis, Pfizer, Lilly Portugal, Amgen Biofarmac{\^e}utica, Gr{\"u}nenthal SA, MSD, Medac and from A. Menarini Portugal - Farmac{\^e}utica, SA; and support for attending meetings from Pfizer, Lilly Portugal and Gr{\"u}nenthal GmbH. MV reports an educational grant from Pfizer for PhD study, outside the submitted work. IL, HZ, CB, KVdE, FF, MdCHM, JH, MLK, SKK, PM, TN, MPN, JP, RR, MS, MS, EW and AvT report no conflicts of interest. No financial relationships with any organisations that might have an interest in the submitted work in the previous 36 months; no other relationships or activities that could appear to have influenced the submitted work. Publisher Copyright: {\textcopyright} Author(s) (or their employer(s)) 2022.",

year = "2022",

month = apr,

day = "22",

doi = "10.1136/rmdopen-2022-002256",

language = "English",

volume = "8",

journal = "RMD Open",

issn = "2056-5933",

publisher = "BMJ Publishing Group",

number = "1",

}

Jones, B, Bennett, S, Larsson, I, Zangi, H, Boström, C, Van der Elst, K, Fayet, F, Fusama, M, Herrero Manso, MDC, Hoeper, JR, Kukkurainen, ML, Kwok, SK, Frãzao-Mateus, E, Minnock, P, Nava, T, Pavic Nikolic, M, Primdahl, J, Rawat, R, Schoenfelder, M, Sierakowska, M, Voshaar, M, Wammervold, E, van Tubergen, A & Ndosi, M 2022, 'Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives', RMD Open, vol. 8, no. 1, e002256. https://doi.org/10.1136/rmdopen-2022-002256

TY - JOUR

T1 - Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis

T2 - a mixed-methods study with patients' perspectives

AU - Jones, Bethan

AU - Bennett, Sarah

AU - Larsson, Ingrid

AU - Zangi, Heidi

AU - Boström, Carina

AU - Van der Elst, Kristien

AU - Fayet, Françoise

AU - Fusama, Mie

AU - Herrero Manso, María Del Carmen

AU - Hoeper, Juliana Rachel

AU - Kukkurainen, Marja Leena

AU - Kwok, Suet Kei

AU - Frãzao-Mateus, Elsa

AU - Minnock, Patricia

AU - Nava, Tiziana

AU - Pavic Nikolic, Milena

AU - Primdahl, Jette

AU - Rawat, Roopa

AU - Schoenfelder, Mareen

AU - Sierakowska, Matylda

AU - Voshaar, Marieke

AU - Wammervold, Edgar

AU - van Tubergen, Astrid

AU - Ndosi, Mwidimi

N1 - © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. Funding Information: Competing interests All authors have completed the ICMJE form for Competing Interests Disclosure and report a research grant from European Alliance of Associations for Rheumatology (EULAR) during the conduct of the study; SB and MN have received speaking fees from CCIS – The Conference Company for speaking at the Irish Rheumatology Nurses Forum meeting. MF reports consulting fees from Janssens Pharmaceuticals, and speaking fees from Janssen pharmaceuticals, Pfizer Inc, Ono Pharmaceuticals, Bristol Myers Squibb, Chugai Pharmaceuticals and Abbvie, all outside the submitted work. BJ reports personal honoraria from Lily UK for speaking at an Expert Webinar, outside the submitted work. EM reports Consulting fees from Boehringer Ingelheim Portugal and LPCDR received grants from Abbvie, Novartis, Pfizer, Lilly Portugal, Amgen Biofarmacêutica, Grünenthal SA, MSD, Medac and from A. Menarini Portugal - Farmacêutica, SA; and support for attending meetings from Pfizer, Lilly Portugal and Grünenthal GmbH. MV reports an educational grant from Pfizer for PhD study, outside the submitted work. IL, HZ, CB, KVdE, FF, MdCHM, JH, MLK, SKK, PM, TN, MPN, JP, RR, MS, MS, EW and AvT report no conflicts of interest. No financial relationships with any organisations that might have an interest in the submitted work in the previous 36 months; no other relationships or activities that could appear to have influenced the submitted work. Publisher Copyright: © Author(s) (or their employer(s)) 2022.

PY - 2022/4/22

Y1 - 2022/4/22

N2 - OBJECTIVES: To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA).METHODS: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories.RESULTS: The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE.CONCLUSION: The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

AB - OBJECTIVES: To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA).METHODS: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories.RESULTS: The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE.CONCLUSION: The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

KW - Arthritis

KW - health services research

KW - patient care team

KW - qualitative research

KW - rehabilitation

U2 - 10.1136/rmdopen-2022-002256

DO - 10.1136/rmdopen-2022-002256

M3 - Article (Academic Journal)

C2 - 35459751

SN - 2056-5933

VL - 8

JO - RMD Open

JF - RMD Open

IS - 1

M1 - e002256

ER -

Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives

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