Ravelli A, Martini A. Juvenile idiopathic arthritis. Lancet. 2007;369:767–78.
CAS
Article
Google Scholar
Giancane G, Consolaro A, Lanni S, Davì S, Schiappapietra B, Ravelli A. Juvenile idiopathic arthritis: diagnosis and treatment. Rheumatol Ther. 2016;3:187–207.
Article
Google Scholar
Thierry S, Fautrel B, Lemelle I, Guillemin F. Prevalence and incidence of juvenile idiopathic arthritis: a systematic review. Jt bone spine. 2014;81:112–7.
Article
Google Scholar
Schanberg LE, Anthony KK, Gil KM, Maurin EC. Daily pain and symptoms in children with polyarticular arthritis. Arthritis Rheum. 2003;48:1390–7.
Article
Google Scholar
Bromberg MH, Connelly M, Anthony KK, Gil KM, Schanberg LE. Self-reported pain and disease symptoms persist in juvenile idiopathic arthritis despite treatment advances: An electronic diary study. Arthritis Rheumatol. 2014;66:462–9.
Article
Google Scholar
Armbrust W, Siers NE, Lelieveld OTHM, Mouton LJ, Tuinstra J, Sauer P. Fatigue in patients with juvenile idiopathic arthritis: A systematic review of the literature. In: Seminars in arthritis and rheumatism. Elsevier; 2016;45:587–595.
Rashid A, Cordingley L, Carrasco R, Foster HE, Baildam EM, Chieng A, et al. Patterns of pain over time among children with juvenile idiopathic arthritis. Arch Dis Child. 2018;103:437–43.
Article
Google Scholar
Shiff NJ, Tupper S, Oen K, Guzman J, Lim H, Lee CH, et al. Trajectories of pain severity in juvenile idiopathic arthritis: results from the Research in Arthritis in Canadian Children Emphasizing Outcomes cohort. Pain. 2018;159:57–66.
Article
Google Scholar
Stinson JN, Luca, NJ, Jibb L. Assessment and management of pain in juvenile idiopathic arthritis. Pain Res Manag. 2012;17:391–6.
Stinson JN, Toomey PC, Stevens BJ, Kagan S, Duffy CM, Huber A, et al. Asking the experts: exploring the self-management needs of adolescents with arthritis. Arthritis Care Res. 2008;59:65–72.
Article
Google Scholar
Moore L, Kirk S. A literature review of children’s and young people’s participation in decisions relating to health care. J Clin Nurs. 2010;19:2215–25.
Article
Google Scholar
Miller VA. Involving youth with a chronic illness in decision-making: highlighting the role of providers. Pediatrics. 2018;142(Supplement 3):S142–8.
Article
Google Scholar
McCabe MA. Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol. 1996;21:505–16.
CAS
Article
Google Scholar
Ringold S, Angeles-Han ST, Beukelman T, Lovell D, Cuello CA, Becker ML, et al. 2019 American College of Rheumatology/Arthritis Foundation guideline for the treatment of juvenile idiopathic arthritis: therapeutic approaches for non-systemic polyarthritis, sacroiliitis, and enthesitis. Arthritis Care Res (Hoboken). 2019;71:717–34.
Article
Google Scholar
Ravelli A, Consolaro A, Horneff G, Laxer RM, Lovell DJ, Wulffraat NM, et al. Treating juvenile idiopathic arthritis to target: recommendations of an international task force. Ann Rheum Dis. 2018;77:819–28.
PubMed
Google Scholar
Toupin-April K, Stinson J, Huber AM, Duffy CM, Gaboury I, Morgan EM, et al. Exploring decision making needs about pain management among adolescents with juvenile idiopathic arthritis and their families: preliminary results from interviews. In: 2018 ACR/ARHP Annual Meeting. ACR; 2018.
Toupin-April K, Stinson J, Huber AM, Couchman D, Ragusa M, Sachs H, et al. Health care providers’ views of decision-making for pain management among youth with juvenile idiopathic arthritis: preliminary results from interviews. In: Childhood Arthritis and Rheumatology Research Alliance Conference; 2019.
Toupin-April K, Laporte-Lafreniere M, Galibois G, Cadieux-Boileau G, Gaboury I, Grandpierre V, et al. A decision making needs assessment of youth with juvenile idiopathic arthritis and their caregivers: preliminary results from a narrative review. J Rheumatol. 2016;46:1149–250.
Google Scholar
Lee RR, Rashid A, Thomson W, Cordingley L. “Reluctant to assess pain”: a qualitative study of health care professionals’ beliefs about the role of pain in juvenile idiopathic arthritis. Arthritis Care Res (Hoboken). 2020;72:69–77.
Article
Google Scholar
Lee RR, Rashid A, Ghio D, Thomson W, Cordingley L. “Seeing pain differently”: a qualitative investigation Into the differences and similarities of pain and rheumatology specialists’ interpretation of multidimensional mobile health pain data from children and young people with juvenile idiopathic arthritis. JMIR mHealth uHealth. 2019;7:e12952.
Article
Google Scholar
Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns. 2006;60:301–12.
Article
Google Scholar
Wilson SR, Strub P, Buist AS, Knowles SB, Lavori PW, Lapidus J, et al. Shared treatment decision making improves adherence and outcomes in poorly controlled asthma. Am J Respir Crit Care Med. 2010;181:566–77.
Article
Google Scholar
Miller VA, Jawad AF. Relationship of youth involvement in diabetes-related decisions to treatment adherence. J Clin Psychol Med Settings. 2014;21:183–9.
Article
Google Scholar
Schmidt S, Petersen C, Bullinger M. Coping with chronic disease from the perspective of children and adolescents–a conceptual framework and its implications for participation. Child Care Health Dev. 2003;29:63–75.
CAS
Article
Google Scholar
Walker NE, Doyon T. ‘Fairness and reasonableness of the child’s decision:’a proposed legal standard for children’s participation in medical decision making. Behav Sci Law. 2001;19:611–36.
CAS
Article
Google Scholar
Stacey D, Légaré F, Lewis K, Mj B, Cl B, Kb E, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;4:1–242.
Google Scholar
Wyatt KD, List B, Brinkman WB, Prutsky Lopez G, Asi N, Erwin P, et al. Shared decision making in pediatrics: a systematic review and meta-analysis. Acad Pediatr. 2015;15:573–83.
Article
Google Scholar
Brinkman WB, Lipstein EA, Taylor J, Schoettker PJ, Naylor K, Jones K, et al. Design and implementation of a decision aid for juvenile idiopathic arthritis medication choices. Pediatr Rheumatol. 2017;15:1–8.
Article
Google Scholar
El Miedany Y, El Gaafary M, Lotfy H, El Aroussy N, Mekkawy D, Nasef SI, et al. Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking. Clin Rheumatol. 2019;38:3217–25.
Article
Google Scholar
Toupin April K, Rader T, Hawker GA, Stacey D, O’Connor AM, Welch V, et al. Development and alpha-Testing of a stepped decision aid for patients considering nonsurgical options for knee and hip osteoarthritis management. J Rheumatol. 2016;43:1891–6.
Article
Google Scholar
Maguire M. Methods to support human-centred design. Int J Hum Comput Stud. 2001;55:587–634.
Article
Google Scholar
Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. Br Med J. 2006;333:417.
Article
Google Scholar
Coulter A, Kryworuchko J, Mullen P, Ng CJ, Stilwell D, Van der Weijden T. 2012 update of the international patient decision aids standards (IPDAS) collaboration’s background document. In: Chapter A. Using a systematic development process. 2012.
O’Connor AM. Ottawa decision support framework to address decisional conflict. 2006. https://decisionaid.ohri.ca/docs/develop/ODSF.pdf. Accessed 16 Mar 2020.
Ruperto N, Meiorin S, Iusan SM, Ravelli A, Pistorio A, Martini A. Consensus procedures and their role in pediatric rheumatology. Curr Rheumatol Rep. 2008;10:142–6.
Article
Google Scholar
Kwok TSH, Bisaillon J, Smith C, Brosseau L, Stinson J, Huber AM, et al. A systemic review of pain relief modalities in juvenile idiopathic arthritis: first step in developing a novel decision support intervention. Pediatr Rheumatol. 2016;14(Supplement 1):P18.
Google Scholar
QSR International Pty Ltd. 2018. NVivo qualitative data analysis software. Version 12. Accessed 16 Jan 2020.
O’Connor AM, Stacey D, Jacobsen MJ. Ottawa personal decision guide. 2015. https://decisionaid.ohri.ca/docs/das/OPDG.pdf. Accessed 16 Mar 2020.
Légaré F, Kearing S, Clay K, Gagnon S, D’Amours D, Rousseau M, et al. Are you SURE? Assessing patient decisional conflict with a 4-item screening test. Can Fam Physician. 2010;56:e308–14.
PubMed
PubMed Central
Google Scholar
Lipstein EA, Lovell DJ, Denson LA, Moser DW, Saeed SA, Dodds CM, et al. Parents’ information needs in tumor necrosis factor-α inhibitor treatment decisions. J Pediatr Gastroenterol Nutr. 2013;56:244–50.
Article
Google Scholar
Strategy for Patient-Oriented Research (SPOR). Patient engagement framework. 2014. https://cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf. Accessed 16 Mar 2020.