TABLE 2

Item Descriptive Statistics and Test–Retest Reliability

FactorNResponse Category number% Responses in Bottom Boxa% Responses in Bottom 2 Boxesb25% PercentileMean ± SDMedian75% Percentile% Response in Top 2 Boxesc% Responses in Top Boxdκe
Factor 1: access to care
 Delays: lack of sufficient servicesf25561.610.244.4 ± 1.264549.023.10.61
 Delays: lack of informationf25561.63.555.1 ± 1.105676.546.30.47
Factor 2: communication with CTMs
 CTMs explained things in understandable manner25560.50.855.2 ± 0.905677.640.80.58
 Family comfortable voicing concerns with CTMs24661.22.055.4 ± 1.036683.363.40.55
 CTMs listened carefully to what family had to say25560.81.245.0 ± 0.995674.539.20.70
 CTMs treated family as a full partner25361.22.855.2 ± 1.126676.352.60.64
Factor 3: family impact
 CTMs discussed things that cause family stress252640.166.712.2 ± 1.34237.53.60.50
 CTMs discussed things that made it hard to care for child253645.170.412.1 ± 1.29236.33.20.62
 CTMs took the whole family into account253618.640.723.5 ± 1.843536.021.30.59
 CTMs offered other than in-person communication255620.831.023.5 ± 1.773532.918.80.52
 CTMs offered peer connections254660.676.411.9 ± 1.34127.53.90.42
Factor 4: care goal creation/planning
 CTMs created short-term care goals251251.8NA00.5 ± 0.5001NA48.20.53
 CTMs created long-term care goals252263.5NA00.4 ± 0.4801NA36.50.49
Factor 5: team functioning/quality
 CTMs knew about advice from other CTMs25565.119.233.9 ± 1.494538.819.20.65
 CTMs assigned and explained responsibility253620.637.223.4 ± 1.783534.416.20.63
 CTMs aware of tests and evaluations25569.419.634.1 ± 1.644647.127.10.65
 CTMs followed through on responsibilities25562.84.344.8 ± 1.235669.036.50.65
 CTMs considered “big picture”25463.914.634.1 ± 1.454546.922.40.68
 CTMs had access to same medical record254238.2NA00.6 ± 0.4911NA61.80.62
  • CTM, care team member; NA, not applicable.

  • a Bottom box: Least favorable response option.

  • b Bottom 2 boxes: 2 least favorable response options.

  • c Top 2 boxes: 2 most favorable response options.

  • d Top box: Most favorable response option.

  • e Sample size for test–retest reliability, n = 118.

  • f This item is reverse coded; thus, higher values indicate better performance.