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Clinical Rheumatology

, Volume 38, Issue 11, pp 3217–3225 | Cite as

Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking

  • Yasser El MiedanyEmail author
  • M. El Gaafary
  • H. Lotfy
  • N. El Aroussy
  • D. Mekkawy
  • S. I. Nasef
  • Y. Farag
  • S. Almedany
  • Ghada Wassif
  • on behalf of PRINTO Egypt
Original Article

Abstract

Objectives

To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes.

Methods

The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category, the child is asked to make a decision in view of the information given. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols.

Results

A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients’ adherence to therapy was significantly (p < 0.01) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly higher in the control group at 12 months of treatment. There was a significant improvement in the patient-reported outcomes in the SDM group, and absence from school was significantly higher in the control group (p < 0.01).

Conclusions

The developed SDM aid offered the children evidence-based information about the pros and cons of treatment options and improved their understanding of the disease and their ability to make an informed decision that is reflected on their adherence to therapy and better treatment outcomes.

Key Points

• This work represents the second generation of shared decision-making tools.

• The developed tool adopts an interactive style and enhances critical thinking, giving the patients the facility of making their own decision regarding their management.

• The work gives an example of core domain set of outcomes which can be used for shared decision-making interventions.

Keywords

Adherence Arthritis Interactive thinking JIA Shared decision making 

Notes

Acknowledgements

We express thanks to all participants, our colleagues, research assistants and nurses for their cooperation and help to bring this research to its final conclusions. Special thanks to Mr. Ali El Miedany (DGS-Dartford, England) for his contribution to the illustration choices and data entry.

Author’s contribution

All authors contributed in the study methodology, analysis and interpretation of the data and outcomes as well as the manuscript writing, reading and approval of the final version. Prof. Wassif shared in the illustrations selection process and visual aids development. Prof. El Gaafary carried out statistical analysis and reviewed the methodology and results sections. Y. El Miedany developed the figures.

Compliance with ethical standards

Disclosures

None.

References

  1. 1.
    El Miedany Y (2014) Adopting patient-centered care in standard practice: PROMs moving toward disease-specific era. Cin Exp Rheumatol 32(Suppl 85):S40–S46Google Scholar
  2. 2.
  3. 3.
    El Miedany Y, El Gaafary M, Sayed S, Palmer D, Ahmed I (2016) Implementing shared decision making in clinical practice: outcomes of a new shared decision making aid for chronic inflammatory arthritis patients. J Pat Care 2:2Google Scholar
  4. 4.
    Lipstein EA, Brinkman WB, Britto MT (2012) What is known about parents’ treatment decisions? A narrative review of pediatric decision making. Med Decis Mak 32:246–258CrossRefGoogle Scholar
  5. 5.
    Lipstein EA, Brinkman WB, Fiks AG, Hendrix KS, Kryworuchko J, Miller VA, Prosser LA, Ungar WJ, Fox D (2015) An emerging field of research: challenges in pediatric decision making. Med Decis Mak 35:403–408CrossRefGoogle Scholar
  6. 6.
    Lipstein E, Brinkman W, Sage J, Lannon CM, DeWitt EM (2013) Understanding treatment decision making in juvenile idiopathic arthritis: a qualitative assessment. Pediatr Rheumatol 11:34–40CrossRefGoogle Scholar
  7. 7.
    Lipstein EA, Lovell DJ, Denson LA, Moser DW, Saeed SA, Dodds CM, Britto MT (2012) Parents’ information needs in tumor necrosis factor-alpha inhibitor treatment decisions. J Pediatr Gastroenterol Nutr 65:244–250Google Scholar
  8. 8.
    Lipstein EA, Muething KA, Dodds CM, Britto MT (2013) “I’m the one taking it”: adolescent participation in chronic disease treatment decisions. J Adolesc Health 53:253–259CrossRefPubMedGoogle Scholar
  9. 9.
    Unguru Y, Sill AM, Kamani N (2010) The experiences of children enrolled in pediatric oncology research: implications for assent. Pediatrics 125:e876–e883CrossRefPubMedGoogle Scholar
  10. 10.
    Beresford BA, Sloper P (2003) Chronically ill adolescents’ experiences of communicating with doctors: a qualitative study. J Adolesc Health 33:172–179CrossRefPubMedGoogle Scholar
  11. 11.
    Knopf JM, Hornung RW, Slap GB, DeVellis RF, Britto MT (2008) Views of treatment decision making from adolescents with chronic illnesses and their parents: a pilot study. Health Expect 11:343–354CrossRefPubMedPubMedCentralGoogle Scholar
  12. 12.
  13. 13.
    West Michigan Rheumatology PLLC. Patient Decision Aids. http://www.mi-arthritis.com/patient-decision-aids/. Accessed 20 June 2018
  14. 14.
    DeWitt EM, Lipstein EA, Staun K, Scherer L, Taylor J, Lannon CM, Brinkman W (2014) A178: development of tools to facilitate shared decision making about medications for juvenile idiopathic arthritis—a project of the pediatric rheumatology care and outcomes improvement network. Arthritis Rheumatol 66(S3):S232–S233CrossRefGoogle Scholar
  15. 15.
    Legare F, Labrecque M, LeBlanc A (2011) Training family physicians in shared decision making for the use of antibiotics for acute respiratory infections: a pilot clustered randomized controlled trial. Health Expect 14(suppl 1):96–110CrossRefPubMedGoogle Scholar
  16. 16.
    Wyatt K, List B, Brinkman W, Lopez G (2015) Shared decision making in pediatrics: a systematic review and meta-analysis. Acad Pediatr 15:573–583CrossRefPubMedGoogle Scholar
  17. 17.
    O’Connor AM, Tugwell P, Wells GA, Elmslie T, Jolly E, Hollingworth G, McPherson R, Bunn H, Graham I, Drake E (1998) A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Couns 33:267–279CrossRefPubMedGoogle Scholar
  18. 18.
    International Patient Decision Aid Standards Collaboration 2006: Checklist for Judging the Quality of Patient Decision Aids. http://ipdas.ohri.ca/IPDAS_checklist.pdf website. Accessed 20 June 2018
  19. 19.
    Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A et al (2006) International patient decision aids standards (IPDAS) collaboration: developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ 333:417–423CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes-Rovner M (2011) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 10:Art. No.:CD001431Google Scholar
  21. 21.
    Ottawa Personal Decision Guide, 2-page interactive PDF. http://decisionaid.ohri.ca/decguide.html website. Accessed 20 June 2018
  22. 22.
    Aletaha D, Neogi T, Silman A, Funovits J, Felson D (2010) 2010 Rheumatoid arthritis classification criteria: an American College of Rheumatology/European League Against Rheumatism collaborative initiative. Ann Rheum Dis 69:1580–1588CrossRefGoogle Scholar
  23. 23.
    Zeidler H, Amor B (2011) The assessment in Spondyloarthritis International Society (ASAS) classification criteria for peripheral arthritis and for spondyloarthritis in general: the spondyloarthritis concept in progress. Ann Rheum Dis 70:1–3CrossRefPubMedGoogle Scholar
  24. 24.
    Garcia-Retamero R, Cokely ET (2013) Communicating health risks with visual aids. Curr Dir Psychol Sci 22:392–399CrossRefGoogle Scholar
  25. 25.
    Petty RE, Southwood TR, Manners P et al (2004) International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision Edmonton. J Rheumatol 31:390–392PubMedGoogle Scholar
  26. 26.
    Hertzog M (2008) Considerations in determining sample size for pilot studies. Res Nurs Heatlh 31:180–191Google Scholar
  27. 27.
    El Miedany Y, Lotfy H, El Aroussy N, Mekkawy D, Nasef SI, Hassan W, El Deriny G, Farag Y, Eissa M, Almedany S, El Gaafary M, on behalf of PRINTO Egypt (2018) Facilitating patient centred care: the development of illustrated multidimensional patient reported outcome measure for children with juvenile idiopathic arthritis. Ann Rheum Dis 77:502Google Scholar
  28. 28.
    Consolaro A, Ruperto N, Bazso A, Pistorio A, Magni-Manzoni S, Filocamo G, Malattia C, Viola S, Martini A, Ravelli A, Paediatric Rheumatology International Trials Organisation (2009) Development and validation of a composite disease activity score for juvenile idiopathic arthritis. Arthritis Care Res 61:658–666CrossRefGoogle Scholar
  29. 29.
    Consolaro A, Negro G, Lanni S, Solari N, Martini A, Ravelli A (2012) Toward a treat-to-target approach in the management of juvenile idiopathic arthritis. Clin Exp Rheumatol 30(Suppl 73):S157–S162PubMedGoogle Scholar
  30. 30.
    Wallace CA, Ruperto N, Giannini E (2004) Preliminary criteria for clinical remission for select categories of juvenile idiopathic arthritis. J Rheumatol 3:22904Google Scholar
  31. 31.
    Magni-Manzoni S, Ruperto N, Pistorio A et al (2008) Development and validation of a preliminary definition of minimal disease activity in patients with juvenile idiopathic arthritis. Arthritis Rheum 59:11207CrossRefGoogle Scholar
  32. 32.
    Consolaro A, Ruperto N, Bracciolini G et al (2014) Defining criteria for high disease activity in juvenile idiopathic arthritis based on the juvenile arthritis disease activity score. Ann Rheum Dis 73:13803CrossRefGoogle Scholar
  33. 33.
    Consolaro A, Bracciolini G, Ruperto N et al (2012) Remission, minimal disease activity, and acceptable symptom state in juvenile idiopathic arthritis. Arthritis Rheum 64:236674CrossRefGoogle Scholar
  34. 34.
    Kriston L, Scholl I, Hölzel L, Simon D, Loh A, Härter M (2010) The 9-item shared decision making questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. Patient Educ Couns 80:94–99CrossRefPubMedGoogle Scholar
  35. 35.
    Simon D, Schorr G, Wirtz M (2006) Development and first validation of the shared decision-making questionnaire (SDM-Q). Patient Educ Couns 63:319–327CrossRefPubMedGoogle Scholar
  36. 36.
    Chin Maha H, Muthupalaniappenb L, Chonga W (2016) Perceived involvement and preferences in shared decision-making among patients with hypertension. Fam Pract 33:296–301CrossRefGoogle Scholar
  37. 37.
    Cramer JA, Roy A, Burrell A, Fairchild CJ, Fuldeore MJ, Ollendorf DA, Wong PK (2008) Medication compliance and persistence: terminology and definitions. Value Health 11:44–47CrossRefPubMedGoogle Scholar
  38. 38.
    SPSS Inc Released 2007. SPSS for windows, version 16.0. Chicago, SPSS IncGoogle Scholar
  39. 39.
    Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB et al (2017) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 1:CD001431Google Scholar
  40. 40.
    Barry M, Edgman-Levitan S (2012) Shared decision making - pinnacle of patient-centered care. N Engl J Med 366:780–781CrossRefPubMedGoogle Scholar
  41. 41.
    O'Connor A, Llewwllyn-Thomas H, Flood A (2004) Modifying unwarranted variations in health care: shared decision making using patient decision aids. Health Aff (Millwood). Suppl Variation:VAR63-VAR72. https://www.ncbi.nlm.nih.gov/pubmed/15471770?dopt=Citation. Accessed 20 June 2018
  42. 42.
    Brinkman W, Lipstein E, Taylor J, Schoettker P, Naylor K, Jones K et al (2017) Design and implementation of a decision aid for juvenile idiopathic arthritis medication choices. Pediatr Rheumatol 15:48–56CrossRefGoogle Scholar
  43. 43.
    Smolen JS, Aletaha D, Bijlsma JW, Breedveld FC, Boumpas D, Burmester G et al (2010) T2T Expert Committee. Treating rheumatoid arthritis to target: recommendations of an international task force. Ann Rheum Dis 69:631–637CrossRefPubMedPubMedCentralGoogle Scholar
  44. 44.
    Hochberg M, Altman R, Toupin April K, Benkhalti K, Guyatt G, Maxwell L et al (2012) American College of Rheumatology 2012 recommendations for the use of nonpharmacologic and pharmacologic therapies in osteoarthritis of the hand, hip and knee. Arthritis Care Res 64:465–474CrossRefGoogle Scholar
  45. 45.
    Smolen JS, Landewé R, Breedveld FC, Buch M, Burmester G, Dougados M, Emery P, Gaujoux-Viala C, Gossec L, Nam J, Ramiro S, Winthrop K, de Wit M, Aletaha D, Betteridge N, Bijlsma JWJ, Boers M, Buttgereit F, Combe B, Cutolo M, Damjanov N, Hazes JMW, Kouloumas M, Kvien TK, Mariette X, Pavelka K, van Riel PLCM, Rubbert-Roth A, Scholte-Voshaar M, Scott DL, Sokka-Isler T, Wong JB, van der Heijde D (2014) EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2013 update. Ann Rheum Dis 73:492–509CrossRefGoogle Scholar
  46. 46.
    Ravelli A, Consolaro A, Horneff G, Laxer RM, Lovell DJ, Wulffraat NM, Akikusa JD, Al-Mayouf SM, Antón J, Avcin T, Berard RA et al (2018 Jun) Treating juvenile idiopathic arthritis to target: recommendations of an international task force. Ann Rheum Dis 77(6):819–828PubMedGoogle Scholar
  47. 47.
    Gossec L, Smolen JS, Ramiro S, de Wit M, Cutolo M, Dougados M, Emery P, Landewé R, Oliver S, Aletaha D, Betteridge N, Braun J, Burmester G, Cañete JD, Damjanov N, FitzGerald O, Haglund E, Helliwell P, Kvien TK, Lories R, Luger T, Maccarone M, Marzo-Ortega H, McGonagle D, McInnes IB, Olivieri I, Pavelka K, Schett G, Sieper J, van den Bosch F, Veale DJ, Wollenhaupt J, Zink A, van der Heijde D (2016) European League Against Rheumatism (EULAR) recommendations for the management of psoriatic arthritis with pharmacological therapies: 2015 update. Ann Rheum Dis 75:499–510CrossRefPubMedGoogle Scholar
  48. 48.
    National assessment of adult learning (NAAL) demographics. https://nces.ed.gov/NAAL/kf_demographics.asp. Accessed 20 June 2018
  49. 49.
    Klamen D, Bindel L (1996) Visual aids for communicating information to patients: an excellent second step. Acad Emerg Med 3:200–201CrossRefPubMedGoogle Scholar

Copyright information

© International League of Associations for Rheumatology (ILAR) 2019

Authors and Affiliations

  1. 1.Rheumatology and RehabilitationSchool of Medicine Ain Shams UniversityCairoEgypt
  2. 2.RheumatologyMedway Foundation TrustGillinghamUK
  3. 3.Community and Public HealthSchool of Medicine Ain Shams UniversityCairoEgypt
  4. 4.PediatricsSchool of Medicine Cairo UniversityCairoEgypt
  5. 5.Rheumatology and RehabilitationSchool of Medicine Suez Canal UniversityIsmailiaEgypt
  6. 6.Rheumatology and RehabilitationSchool of Medicine Tanta UniversityTantaEgypt
  7. 7.AnatomyTaibah UniversityTaibahSaudi Arabia

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