4. Primary outcome data.
| Study ID | Disease activity at study end | Flare‐ups or relapse | Quality of life at study end |
| Berding 2017 | Perceived disease activity measured using the German Inflammatory Bowel Disease Activity Index (GIBDI) Mean (SD) 2 weeks post intervention: IG: 2.89 (2.36) CG: 3.64 (2.28) 3 months post intervention: IG 3.04 (2.77) CG 3.76 (2.53) |
NR | Measured using the SF‐12 questionnaire Physical HRQoL mean (SD) : 2 weeks post‐intervention: NR 3 months post‐intervention: IG: 47.62 (9.08); CG: 46.60 (9.16) Mental HRQoL mean (SD): 2 weeks post‐intervention: NR 3 months post‐intervention: IG: 46.41 (11.00); CG: 42.70 (10.89) |
| Borgaonkar 2002 | NR | NR | IBDQ (total) mean (SD): IG 167.8 (39.9) CG 162.6 (32.4) IBDQ (mean score/question): (range 1–7) IG: 5.26 (1.2) CG: 5.1 (1.0) (the paper also provides results for the 4 items that comprise this questionnaire) QuICC (total) mean (SD): IG: 87.0 (20.61) CG: 85.7 (19.83) QuICC (mean score/question): (range 1–5) IG: 2.4 (0.57) CG: 2.3 (0.54) |
| Cross 2019 | To assess disease activity for participants with CD, the HBI was used and the SCCAI was used to assess disease activity for patients with UC/indeterminate colitis HBI scores at study end, mean (SD): IG1 (TELE‐IBD EOW): 4.2 (3.9) IG2 (TELE‐IBD W): 3.2 (3.4) CG: 3.7 (3.6) SCCAI scores at study end, mean (SD): IG1 (TELE‐IBD EOW): 1.7 (1.9) IG2 (TELE‐IBD W): 2.0 (1.8) CG: 1.4 (1.4) |
NR | Disease‐specific QOL was assessed with the IBD Questionnaire (IBDQ). IBDQ scores at study end, mean (SD): IG1 (TELE‐IBD EOW): 181.5 (28.2) IG2 (TELE‐IBD W): 179.2 (32.8) CG: 179.3 (28.2) |
| De Jong 2017 | NR | Mean number of flare‐ups (SD): IG: 0.19 (0.42) CG: 0.19 (0.44) |
Short Inflammatory Bowel Disease Questionnaire (SIBDQ) scores at 12 months IG: N = 340, with mean score (SD) 54.44 (9.05) CG: N = 331, with mean score (SD) 53.71 (9.87) |
| Jaghult 2007 | NR | NR | Mean score at 6 months, no SDs given IBDQ: IG 57.85; CG 55.58 IBDQ1: bowel symptoms IG 19.48; CG 19.13 IBDQ2: systemic symptoms IG 11.65; CG 10.55 IBDQ3: social functions IG 6.31; CG 6.13 IBDQ4: emotional functions IG 20.40; CG 19.77 Rating Form of IBD Patient Concerns (RFIPC), median sum score IG 34.75 (25.96); CG 32.14 (21.44) (source material not clear about whether the numbers in brackets are SDs) |
| Kennedy 2002 | NR | Mean number of reported relapses during the trial year: IG: 1.8 (2.2) CG: 2.2 (2.5) Relapses intraclass correlation coefficient (ICC) = 0.054 design effect for clustering: IG: 1.4 CG: 1.5 Effective sample size: IG: 85 CG: 81 Effective sample size after dropouts: IG: 50 CG: 63 |
IBDQ questionnaire score at study end: IG: mean (SD) 172.3 (36.6) CG: mean (SD) 167.7 (37.5) IBDQ ICC = 0.033 Design effect for clustering: IG: 1.3 CG: 1.3 Effective sample size IG: 92 CG: 93 Effective sample size after dropouts IG: 54 CG: 72 |
| Moreau 2021 | NR | NR | QOL measured using the SIBDQ Odds ratio (95% CI) 1.02 (1.01–1.03) |
| Nikolaus 2017 | Authors stated disease activity as an outcome and that they measured it using the CAI, however the data were not presented | Acute relapse defined as CAI ≥ 9 IG: 9 CG: 10 |
NR |
| Oxelmark 2007 | NR | IG: 1 CG: 0 |
Mean score (SD) IBDQ at 6 months IG: 175.7 (35.0) CG: 187.9 (27.7) IBDQ at 12 months IG: 171.8 (28.2) CG: 173.7 (28.2) (The paper also provided results for the 4 items that comprise this questionnaire) |
| Uran 2019 | Number of participants at 8 weeks: IG (web‐based education): UC: remission 8, mild disease 6, severe disease 2, very severe disease 0 CD: remission 5, mild disease 7, severe disease 2, very severe disease 0 CG (standard education): UC: remission 10, mild disease 4, severe disease 1, very severe disease 1 CD: remission 10, mild disease 3, severe disease 1, very severe disease 0 |
NR |
IBD Quality of Life Scale (IBDQ) mean (SD), at 8 weeks IG (web‐based education): 156.53 (30.97) CG: 155.63 (34.30) |
| Vaz 2019 | NR | All participants remained in remission throughout the study | NR |
| Walkiewicz 2011 | NR | NR | NR |
| Waters 2005 | NR | NR | Raw results not provided. Author stated, "No difference was found for IBDQ total scores between groups at baseline, T2 or T3." "No differences were found between the education and control groups for mean total RFIPC scores over the course of the study" |
| Weizman 2021 | NR | NR | NR |
CAI: Colitis Activity Index; CG: control group; HBI: Harvey‐Bradshaw Index for Crohn's disease; HRQoL: health‐related quality of life; IBD: inflammatory bowel disease; IBDQ: Inflammatory Bowel Disease Questionnaire; IG: Intervention group; NR: not reported; QOL: quality of life; QuICC: Quality Index in Crohn’s and Colitis; RFIPC: Rating Form of IBD Patient Concerns; SCCAI: Simple Clinical Colitis Activity Index; SD: standard deviation; SIBDQ: Short Inflammatory Bowel Disease Questionnaire; TELE‐IBD W: group that received a telemedicine message every week; TELE‐IBD EOW: group that received a telemedicine message every other week; UC: ulcerative colitis