Respiratory Exacerbation Plans for Action and Care Transitions for Children With Severe CP

Feasibility will, in part, be measured by the number of days to meet target enrollment by wave. There are a total of 3 recruitment waves.

This Outcome Measure was assessed by child.

Feasibility will, in part, be measured by the number of days between randomization and (time zero) intervention activities.

This Outcome Measure was assessed by child.

Feasibility will, in part, be measured by the amount of time it takes to deliver the intervention.

This Outcome Measure was assessed by child.

Feasibility will, in part, be measured by the amount of time it takes to deliver the intervention.

This Outcome Measure was assessed by child.

Feasibility will, in part, be measured by the number of intervention triggers per patient (annualized), including respiratory and non-respiratory triggers.

This Outcome Measure was assessed by child.

Feasibility will in part be measured by the presence of necessary data infrastructure issues. This is a measure of the presence of complete data collection, between 2 sites, data use agreements and Institutional Review Board reliance. This outcome includes any events that occur over the study duration.

Acceptability will in part be measured by the participant enrollment rate, or the number of participants enrolled divided by the number of participants approached + potentially eligible.

This Outcome Measure was assessed by child.

Acceptability will in part be assessed by collecting potential participants reason for not consenting to the study. Reasons will be summarized in tabular form.

This Outcome Measure was assessed in caregivers.

Acceptability will in part be measured by the participant drop out rate.

This Outcome Measure was assessed by child.

Acceptability of the intervention will in part be measured by the participant feedback.

• The number of months, on average, where participants reported use of an action plan.

This Outcome Measure was assessed by dyad.

Acceptability of the intervention will in part be measured by the participant feedback.

• Number of participants reporting definite or probably recommendation of action planning to others.

This Outcome Measure was assessed by dyad.

Acceptability of the intervention will in part be measured by the participant feedback.

• Number of participants reporting definite or probably recommendation of texting and clinical response to others.

This Outcome Measure was assessed in dyads.

Acceptability of the intervention will in part be measured by the participant feedback.

• 'How much would you want these approaches to continue as a part of regular care after the study is done?'.

This Outcome Measure was assessed in dyads.

Acceptability of the intervention will in part be measured by composite score. The System Usability Scale is a 10-item survey scored on a 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree). Higher scores indicate higher usability. Score range = 0 - 100.

This Outcome Measure was assessed in dyads.

To calculate the score:

Step 1: Convert the scale into number for each of the 10 questions Strongly Disagree: 1 point Disagree: 2 points Neutral: 3 points Agree: 4 points Strongly Agree: 5 points

Step 2: Calculate X = Sum of the points for all odd-numbered questions - 5 Y = 25 - Sum of the points for all even-numbered questions SUS Score = (X + Y) x 2.5

Fidelity of the intervention will in part be measured by the amount of time (in months) the participant was enrolled in the study. The target participation time is 6 months.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the number of respiratory and overall action plans per patient. The goal is greater than or equal to 1.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the number of respiratory and overall action plans per patient. The goal is greater than or equal to 1.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the coaching visit success rate, which is the number of visits (at home or virtually) completed divided by the number of visits expected), stratified by trigger. The goal is over 80 percent.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the coaching phone call completion rate, which is the number of calls completed divided by the number of calls expected), stratified by trigger. The goal is over 80 percent.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the coaching phone call completion rate, which is the number of calls completed divided by the number of calls expected), stratified by trigger. The goal is over 80 percent.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the coaching phone call completion rate, which is the number of calls completed divided by the number of calls expected), stratified by trigger. The goal is over 80 percent.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the coaching phone call completion rate, which is the number of calls completed divided by the number of calls expected), stratified by trigger. The goal is over 80 percent.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the response rate to mHealth text messages, which is the number of texts responded divided by the number of texts expected.

This Outcome Measure was assessed in dyads.

Fidelity of the intervention will in part be measured by cross-over, which is the number of participants inappropriately receiving the intervention component.

This Outcome Measure was assessed in children.

Fidelity of the intervention will in part be measured by the data collection rate, which is the number of data collection events complete divided by the number of total data collections events possible.

This Outcome Measure was assessed in dyads.

Fidelity of the intervention will in part be measured by the data collection rate, which is the number of data collection events complete divided by the number of total data collections events possible.

This Outcome Measure was assessed in dyads.

Fidelity of the intervention will in part be measured by the data collection rate, which is the number of data collection events complete divided by the number of total data collections events possible.

This Outcome Measure was assessed in dyads.

Severe respiratory illness, defined as respiratory diagnoses requiring hospitalization. Respiratory diagnoses includes discharge diagnosis of any of the following: asthma, pneumonia (community or hospital acquired), bronchiolitis, influenza, upper or lower respiratory tract infection, tracheitis, aspiration pneumonia/pneumonitis, chronic lung disease, respiratory failure.

• Number of children with at least 1 severe respiratory illness

Hospital days were summed by arm.

Capability is in part measured by the FCAT mean composite score,. FCAT is a 10-item survey to assess the caregiver's challenges on the day it is taken, scored on a 5 point likert scale from 1 (disagree strongly) to 5 (agree strongly). The mean composite score ranges from 1 - 5 with higher scores indicating higher activation. Activation of a family member refers to their desire, knowledge, confidence, and skills that can inform engagement in healthcare.

Capability is in part measured by the GSES sum composite score. GSES is a 10-item survey scored on a 4-point Likert scale from 1 (not true at all) to 4 (exactly true). The sum composite score ranges from 10 - 40, with higher scores indicating higher efficacy.

Opportunity is assessed via the FECC score, using measure specifications for each item(s). The Care Coordination Question set assesses the statement "Care Coordinator Was Knowledgeable, Supportive and Advocated for Child's Needs" on a scale from 0 - 100 with

• 0 = "Care Coordinator Was NOT Knowledgeable, Supportive and Advocated for Child's Needs"
• 100 = "Care Coordinator Was DEFINITELY Knowledgeable, Supportive and Advocated for Child's Needs."

This Outcome Measure was assessed in dyads.

Motivation is assessed by the confidence response to weekly texting and averaged over time by participant. (1-10 with higher scores indicating increased confidence).

This Outcome Measure was assessed in dyads.