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

Miedany, Yasser El; Gaafary, M. El; Lotfy, Hayam M.; Aroussy, N. El; Mekkawy, D.; Nasef, Samah Ismail; Farag, Yomna; Almedany, S.; Wassif, Ghada; Egypt, Printo

doi:10.1007/s10067-019-04687-y

Cited by 17 publications

(16 citation statements)

References 37 publications

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“…Likewise, Simmons-Batchelor [ 26 ] found a mean participation score of 5.46 (SD=0.59) in the intervention group of youth mental health patients, compared to 4.13 in the control group (SD=0.83, p <0.001). Results from the study by El Miedany [ 27 ] in juvenile idiopathic arthritis patients showed a similar pattern on three aspects of patient involvement. First, 70% of the intervention group reported being more involved by the clinician compared to 30% of the control group (RD=40%, p <0.01).…”

Section: Resultsmentioning

confidence: 62%

“…Results from El Miedany also indicated that SDM helped increase the level of participation regarding how to proceed with that particular treatment [27] (Fig. 5).…”

Section: Risk Of Bias Assessmentmentioning

confidence: 85%

“…Participants and healthcare professionals were blinded to the intervention in 11% of the studies. Risk of performance bias was low in 77% of the studies, while detection bias was [27] in juvenile idiopathic arthritis patients showed a similar pattern on three aspects of patient involvement. First, 70% of the intervention group reported being more involved by the clinician compared to 30% of the control group (RD=40%, p<0.01).…”

Section: Risk Of Bias Assessmentmentioning

confidence: 85%

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Chronically ill children’s participation and health outcomes in shared decision-making: a scoping review

et al. 2021

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Based on the United Nations Conventions on the Rights of the Child (CRC), it is a child’s right to participate in all matters concerning its wellbeing. Little is known about chronically and/or critically ill children’s participation in pediatric shared decision-making (SDM). We explored medical literature to see if and how these children participate in pediatric SDM. We searched relevant medical databases published between January 2008 and January 2020 for studies targeting children aged 4–18 years old, suffering from a chronic and/or critical disease. We found 9 relevant studies. SDM interventions mostly used were decision aids (n=8), questionnaires for caretakers/parents and children (n=4), and a SDM toolkit (n=2). Perceived involvement in SDM and knowledge increased amongst children, adolescents, and caretakers following these interventions. Decisional conflict measured using the 0–100 point DCS scale (higher scores indicate more decisional conflict) was reduced by 15.9 points in one study (p<0.01) and 17.8 points in another (95%CI: 13.3–22.9). Lower scores were associated with higher satisfaction with the decision aid by children, caretakers, and clinicians.Conclusion: Stakeholders should advocate initiatives to facilitate a child’s participation preferences regarding pediatric SDM since decision support tools help chronically ill children to be more involved in SDM as they increase the children’s knowledge and satisfaction and reduce decisional conflicts. What is Known:• Decision aids can help improve participation, knowledge, satisfaction, and health outcomes.• Quality and consistency of the information exchange impact quality and outcome of SDM. What is New:• Depending on a child’s age, evolving capacities, and communication and participation preferences, more evidence is needed on which tools are suitable for chronically ill children to ensure their preferred participation in pediatric SDM.• Pediatricians adopt healthcare SDM tools and techniques that do not always take into account that a child’s right to participate in pediatric SDM including the tendency to use interventions that are not specifically designed for pediatrics.

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Section: Resultsmentioning

confidence: 62%

“…Results from El Miedany also indicated that SDM helped increase the level of participation regarding how to proceed with that particular treatment [27] (Fig. 5).…”

Section: Risk Of Bias Assessmentmentioning

confidence: 85%

Section: Risk Of Bias Assessmentmentioning

confidence: 85%

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Chronically ill children’s participation and health outcomes in shared decision-making: a scoping review

et al. 2021

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“…The data on prevalence of PtGA-PGA discordance we recorded in our BS cohort are consistent with those reported in several other studies on different rheumatic diseases, where a trend toward a higher rating of disease activity by patients than by their physicians was observed in 30-50% of cases. In many of these studies, the authors concluded that using PtGA without an adequate counterbalance by other objective indices may result in overtreatment of patients because of non-inflammatory alterations that are unresponsive to the pharmacological therapy [7][8][9][10][11]. In our cohort, we observed a high frequency of agreement between PtGA and PGA in patients with low BDCAF values, whereas the level of disagreement grew up as the BDCAF values increased.…”

Section: Discussionmentioning

confidence: 59%

“…According to the European League Against Rheumatism (EULAR) recommendations, the treatment of BS should be individually tailored and therapeutic decisions should be based on a consultation between patient and physician through shared decision-making [6]. Indeed, many studies on several chronic illnesses have shown that, when there is concordance between patients' and physicians' judgment on the disease status, adherence to treatment and outcomes significantly improve [7][8][9].…”

Section: Introductionmentioning

confidence: 99%

Discordance between patient and physician global assessment of disease activity in Behçet’s syndrome: a multicenter study cohort

et al. 2020

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Background To compare the patients’ and physician’s global assessment of disease activity in Behçet’s syndrome (BS) and investigate the frequency, magnitude, and determinants of potential discordance. Methods A total of 226 adult BS patients with a median (IQR) age of 46.9 (35.6–55.2) years were enrolled across Italy, Greece, Portugal, and Spain. Demographic, clinical, and therapeutic variables, as well as the patient reported outcomes, were collected at the recruitment visit. The physical (PCS) and mental (MCS) component summary scores of the Short Form Questionnaire 36 (SF-36) and the Behçet’s syndrome Overall Damage Index (BODI) were calculated. Disease activity was assessed by the patients’ (PtGA) and physician’s global assessment (PGA) in a 10-cm visual analog scale, as well as the Behçet Disease Current Activity Form (BDCAF). Discordance (∆) was calculated by subtracting the PGA from the PtGA and defined as positive (PtGA>PGA) and negative (PtGA<PGA) discordance using both a more stringent (∆ = ±2) and a less stringent (∆ = ±1) cutoff. Univariate and multivariate logistic regressions were performed. Results Median PtGA and PGA scores were 2.0 (0.3–5.0) and 1.0 (0.0–3.0) cm, respectively. The discordance prevalence varied (from 29.6 to 55.3%) according to the cutoff applied, and the majority (> 80%) of disagreements were due to patients rating higher their disease activity. Higher values of BDCAF were associated to increased rate of positive discordance. When BDCAF = 0, the median (IQR) values of PtGA and PGA were 0.2 (0–2) and 0 (0–1), respectively. PCS (adjusted odds ratio (adjOR) 0.96 per unit, 95% CI 0.93–0.98, p = 0.006) and MCS (adjOR 0.96 per unit, 95% CI 0.93–0.99, p = 0.003) were independently associated with positive discordance using both cutoffs. Active ocular involvement emerged as a potential determinant of negative discordance (adjOR 5.88, 95% CI 1.48–23.30, p = 0.012). Conclusions PtGA and PGA should be considered as complementary measures in BS, as patients and physicians may be influenced by different factors when assessing active disease manifestations. Particularly, PtGA may be a useful tool in the assessment of BS disease activity, as it carries a low risk to misclassify an inactive disease, and may allow to capture aspects of the patient’s health that negatively affect his well-being and the treatment.

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Decision aids for people facing health treatment or screening decisions

Stacey,

Lewis,

Smith

et al. 2024

Cochrane Database of Systematic Reviews

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

Cited by 17 publications

References 37 publications

Chronically ill children’s participation and health outcomes in shared decision-making: a scoping review

Chronically ill children’s participation and health outcomes in shared decision-making: a scoping review

Discordance between patient and physician global assessment of disease activity in Behçet’s syndrome: a multicenter study cohort

Decision aids for people facing health treatment or screening decisions

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