Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map

the JIA Option Map Group

doi:10.1007/s40271-020-00458-z

Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map

the JIA Option Map Group

Medicine

Producción científica: Contribución a una revista › Artículo › revisión exhaustiva

8 Citas (Scopus)

Resumen

Background: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. Objective: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. Methods: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8–18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. Results: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. Conclusion: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.

Idioma original	English
Páginas (desde-hasta)	719-728
Número de páginas	10
Publicación	Patient
Volumen	13
N.º	6
DOI	https://doi.org/10.1007/s40271-020-00458-z
Estado	Published - dic. 2020

Nota bibliográfica

Funding Information:
The authors thank Lucie Brosseau, Janique Gagnon, Marg Bisch, Cathy Walker, Timothy Kwok, Lindsay Junkin, Tracy Ting, William Bernal, Ken Schikler, Laura Schanberg, Bridget Edghill, and Chitra Lalloo for their feedback throughout this research project. We would also like to thank the study participants and the CHEO Rheumatology clinic, CARRA and PR-COIN. JIA Option Map Group: Deema Couchman, Children’s Hospital of Eastern Ontario Research Institute; University of Ottawa, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-9918-2582). Fjolla Berbatovci, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-7711-5365). Andrea Boyd, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-4118-2766). Hannah Sachs, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-9030-2632). Alexandra Sirois, Canadian Arthritis Patient Alliance, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-9513-0232). Aditi Sivakumar, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-2098-6191). Marco Ragusa, Children’s Hospital of Eastern Ontario Research Institute; University of Ottawa, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-7938-5879). Tania El Hindi, Statistics Canada, Ottawa, Ontario, Canada (ORCID iD: 0000-0002-8670-7941). Elizabeth Stringer, Division of Rheumatology, IWK Health Centre; Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada. Sabrina Cavallo, School of Rehabilitation, Université de Montréal, Montréal, Québec, Canada. (ORCID iD: 0000-0003-0484-1205). Erin Ueffing, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. Michele Gibbon, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0003-4630-8425). Paul R. Fortin, Axe Maladies infectieuses et immunitaires, CHU de Québec; Université Laval, Québec City, Québec, Canada. (0000-0002-7278-2596). William Brinkman, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center; University of Cincinnati College of Medicine, Cincinnati, Ohio, USA. (ORCID iD: 0000-0003-3336-7637). Mark Connelly, Division of Developmental and Behavioral Health, Children’s Mercy Kansas City, Kansas City, Missouri, USA (ORCID iD: 0000-0001-8157-8901). Jennifer E. Weiss, Pediatric Rheumatology, Hackensack Meridian Health, Hackensack University Medical Center, Hackensack, New Jersey, USA (ORCID iD: 0000-0002-8954-1326). Sabrina Gmuca, Division of Rheumatology, Center for Pediatric Clinical Effectiveness, PolicyLab, Children’s Hospital of Philadelphia; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA (ORCID iD: 0000-0003-3533-5698). Simon Décary, Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation, Centre de recherche sur les soins et les services de première ligne de l’Université Laval (CERSSPL-UL); Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City, Québec, Canada (ORCID iD: 0000-0002-8672-5672).

Funding Information:
This work was supported by a Young Investigator Operating Grant from The Arthritis Society (Dr. Karine Toupin April, principal investigator), operating funds from the Chronic Pain Network (a Network funded by the CIHR SPOR), the CHEO Research Institute, and an Early Researcher Award from the Ontario Ministry of Economic Development, Job Creation and Trade (Dr. Karine Toupin April).

Publisher Copyright:
© 2020, Springer Nature Switzerland AG.

ASJC Scopus Subject Areas

Nursing (miscellaneous)

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10.1007/s40271-020-00458-z

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@article{ba000327f0fd4690afab551b253f06da,

title = "Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map",

abstract = "Background: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. Objective: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. Methods: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8–18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. Results: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. Conclusion: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.",

author = "{the JIA Option Map Group} and Karine Toupin-April and Huber, {Adam M.} and Duffy, {Ciar{\'a}n M.} and Laurie Proulx and Morgan, {Esi M.} and Cohen, {Janice S.} and Isabelle Gaboury and Li, {Linda C.} and Peter Tugwell and Jennifer Stinson and Deema Couchman and Fjolla Berbatovci and Andrea Boyd and Hannah Sachs and Alexandra Sirois and Aditi Sivakumar and Marco Ragusa and Tania El Hindi and Elizabeth Stringer and Sabrina Cavallo and Erin Ueffing and Michele Gibbon and Fortin, {Paul R.} and William Brinkman and Mark Connelly and Weiss, {Jennifer E.} and Sabrina Gmuca and Simon D{\'e}cary",

note = "Funding Information: The authors thank Lucie Brosseau, Janique Gagnon, Marg Bisch, Cathy Walker, Timothy Kwok, Lindsay Junkin, Tracy Ting, William Bernal, Ken Schikler, Laura Schanberg, Bridget Edghill, and Chitra Lalloo for their feedback throughout this research project. We would also like to thank the study participants and the CHEO Rheumatology clinic, CARRA and PR-COIN. JIA Option Map Group: Deema Couchman, Children{\textquoteright}s Hospital of Eastern Ontario Research Institute; University of Ottawa, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-9918-2582). Fjolla Berbatovci, Children{\textquoteright}s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-7711-5365). Andrea Boyd, Children{\textquoteright}s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-4118-2766). Hannah Sachs, Children{\textquoteright}s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-9030-2632). Alexandra Sirois, Canadian Arthritis Patient Alliance, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-9513-0232). Aditi Sivakumar, Children{\textquoteright}s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-2098-6191). Marco Ragusa, Children{\textquoteright}s Hospital of Eastern Ontario Research Institute; University of Ottawa, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-7938-5879). Tania El Hindi, Statistics Canada, Ottawa, Ontario, Canada (ORCID iD: 0000-0002-8670-7941). Elizabeth Stringer, Division of Rheumatology, IWK Health Centre; Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada. Sabrina Cavallo, School of Rehabilitation, Universit{\'e} de Montr{\'e}al, Montr{\'e}al, Qu{\'e}bec, Canada. (ORCID iD: 0000-0003-0484-1205). Erin Ueffing, Children{\textquoteright}s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. Michele Gibbon, Children{\textquoteright}s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0003-4630-8425). Paul R. Fortin, Axe Maladies infectieuses et immunitaires, CHU de Qu{\'e}bec; Universit{\'e} Laval, Qu{\'e}bec City, Qu{\'e}bec, Canada. (0000-0002-7278-2596). William Brinkman, Department of Pediatrics, Cincinnati Children{\textquoteright}s Hospital Medical Center; University of Cincinnati College of Medicine, Cincinnati, Ohio, USA. (ORCID iD: 0000-0003-3336-7637). Mark Connelly, Division of Developmental and Behavioral Health, Children{\textquoteright}s Mercy Kansas City, Kansas City, Missouri, USA (ORCID iD: 0000-0001-8157-8901). Jennifer E. Weiss, Pediatric Rheumatology, Hackensack Meridian Health, Hackensack University Medical Center, Hackensack, New Jersey, USA (ORCID iD: 0000-0002-8954-1326). Sabrina Gmuca, Division of Rheumatology, Center for Pediatric Clinical Effectiveness, PolicyLab, Children{\textquoteright}s Hospital of Philadelphia; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA (ORCID iD: 0000-0003-3533-5698). Simon D{\'e}cary, Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation, Centre de recherche sur les soins et les services de premi{\`e}re ligne de l{\textquoteright}Universit{\'e} Laval (CERSSPL-UL); Department of Family Medicine and Emergency Medicine, Universit{\'e} Laval, Quebec City, Qu{\'e}bec, Canada (ORCID iD: 0000-0002-8672-5672). Funding Information: This work was supported by a Young Investigator Operating Grant from The Arthritis Society (Dr. Karine Toupin April, principal investigator), operating funds from the Chronic Pain Network (a Network funded by the CIHR SPOR), the CHEO Research Institute, and an Early Researcher Award from the Ontario Ministry of Economic Development, Job Creation and Trade (Dr. Karine Toupin April). Publisher Copyright: {\textcopyright} 2020, Springer Nature Switzerland AG.",

year = "2020",

month = dec,

doi = "10.1007/s40271-020-00458-z",

language = "English",

volume = "13",

pages = "719--728",

journal = "Patient",

issn = "1178-1653",

publisher = "Springer Science + Business Media",

number = "6",

}

TY - JOUR

T1 - Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis

T2 - The JIA Option Map

AU - the JIA Option Map Group

AU - Toupin-April, Karine

AU - Huber, Adam M.

AU - Duffy, Ciarán M.

AU - Proulx, Laurie

AU - Morgan, Esi M.

AU - Cohen, Janice S.

AU - Gaboury, Isabelle

AU - Li, Linda C.

AU - Tugwell, Peter

AU - Stinson, Jennifer

AU - Couchman, Deema

AU - Berbatovci, Fjolla

AU - Boyd, Andrea

AU - Sachs, Hannah

AU - Sirois, Alexandra

AU - Sivakumar, Aditi

AU - Ragusa, Marco

AU - El Hindi, Tania

AU - Stringer, Elizabeth

AU - Cavallo, Sabrina

AU - Ueffing, Erin

AU - Gibbon, Michele

AU - Fortin, Paul R.

AU - Brinkman, William

AU - Connelly, Mark

AU - Weiss, Jennifer E.

AU - Gmuca, Sabrina

AU - Décary, Simon

N1 - Funding Information: The authors thank Lucie Brosseau, Janique Gagnon, Marg Bisch, Cathy Walker, Timothy Kwok, Lindsay Junkin, Tracy Ting, William Bernal, Ken Schikler, Laura Schanberg, Bridget Edghill, and Chitra Lalloo for their feedback throughout this research project. We would also like to thank the study participants and the CHEO Rheumatology clinic, CARRA and PR-COIN. JIA Option Map Group: Deema Couchman, Children’s Hospital of Eastern Ontario Research Institute; University of Ottawa, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-9918-2582). Fjolla Berbatovci, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-7711-5365). Andrea Boyd, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-4118-2766). Hannah Sachs, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-9030-2632). Alexandra Sirois, Canadian Arthritis Patient Alliance, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-9513-0232). Aditi Sivakumar, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-2098-6191). Marco Ragusa, Children’s Hospital of Eastern Ontario Research Institute; University of Ottawa, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-7938-5879). Tania El Hindi, Statistics Canada, Ottawa, Ontario, Canada (ORCID iD: 0000-0002-8670-7941). Elizabeth Stringer, Division of Rheumatology, IWK Health Centre; Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada. Sabrina Cavallo, School of Rehabilitation, Université de Montréal, Montréal, Québec, Canada. (ORCID iD: 0000-0003-0484-1205). Erin Ueffing, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. Michele Gibbon, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0003-4630-8425). Paul R. Fortin, Axe Maladies infectieuses et immunitaires, CHU de Québec; Université Laval, Québec City, Québec, Canada. (0000-0002-7278-2596). William Brinkman, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center; University of Cincinnati College of Medicine, Cincinnati, Ohio, USA. (ORCID iD: 0000-0003-3336-7637). Mark Connelly, Division of Developmental and Behavioral Health, Children’s Mercy Kansas City, Kansas City, Missouri, USA (ORCID iD: 0000-0001-8157-8901). Jennifer E. Weiss, Pediatric Rheumatology, Hackensack Meridian Health, Hackensack University Medical Center, Hackensack, New Jersey, USA (ORCID iD: 0000-0002-8954-1326). Sabrina Gmuca, Division of Rheumatology, Center for Pediatric Clinical Effectiveness, PolicyLab, Children’s Hospital of Philadelphia; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA (ORCID iD: 0000-0003-3533-5698). Simon Décary, Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation, Centre de recherche sur les soins et les services de première ligne de l’Université Laval (CERSSPL-UL); Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City, Québec, Canada (ORCID iD: 0000-0002-8672-5672). Funding Information: This work was supported by a Young Investigator Operating Grant from The Arthritis Society (Dr. Karine Toupin April, principal investigator), operating funds from the Chronic Pain Network (a Network funded by the CIHR SPOR), the CHEO Research Institute, and an Early Researcher Award from the Ontario Ministry of Economic Development, Job Creation and Trade (Dr. Karine Toupin April). Publisher Copyright: © 2020, Springer Nature Switzerland AG.

PY - 2020/12

Y1 - 2020/12

N2 - Background: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. Objective: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. Methods: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8–18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. Results: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. Conclusion: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.

AB - Background: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. Objective: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. Methods: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8–18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. Results: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. Conclusion: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.

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JF - Patient

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Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map

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