Outcome
| Type |
Measure |
Description |
Time frame |
Safety issue |
| Primary |
Technical feasibility (FHIR data transfer EHR to app) |
Quantitative measurement of technical feasibility assessed by success rate of FHIR-enabled EHR data transfer to app |
Up to 6 months |
|
| Primary |
Technical feasibility (FHIR data transfer app to provider dashboard) |
Quantitative measurement of technical feasibility processes assessed by success rate of FHIR-enabled transfer of family-reported health insights from app to EHR provider dashboard |
Up to 6 months |
|
| Primary |
Implementation (feasibility) |
User-reported surveys of implementation outcomes assessed by the Feasibility of Intervention Measure (FIM), a 4-item scale that assesses whether a given method or condition can be successfully used in a specific setting. Responses to all survey items use a 5-point Likert scale from minimum 1 (completely disagree) to maximum 5 (completely agree). Higher scores are correlated with more positive responses. |
End of study (6 months) |
|
| Primary |
Implementation (acceptability) |
User-reported surveys of implementation outcomes assessed by the Acceptability of Intervention Measure (AIM), a 4-item scale that assesses whether a treatment or condition is satisfactory or agreeable to stakeholders. Responses to all survey items use a 5-point Likert scale from minimum 1 (completely disagree) to maximum 5 (completely agree). Higher scores are correlated with more positive responses. |
End of study (6 months) |
|
| Primary |
Implementation (appropriateness) |
User-reported surveys of implementation outcomes assessed by the Intervention Appropriateness Measure (IAM), a 4-item scale that assesses perceived compatibility or fit of a treatment or condition for a given setting or issue. Responses to all survey items use a 5-point Likert scale from minimum 1 (completely disagree) to maximum 5 (completely agree). Higher scores are correlated with more positive responses. |
End of study (6 months) |
|
| Primary |
Change in parent/caregiver-reported degree of care integration, as measured by Pediatric Integrated Care Survey (PIC) |
Parent/caregiver report of experiences with care integration will be measured using the validated core 19-item PICS instrument. A composite score is calculated separately for each of the 5 survey constructs: access, communication, family impact, care goal creation, and team functioning. |
Baseline, 6 months |
|
| Primary |
Change in health-related quality of life (HR-QOL) |
Parent/caregiver report of child's health-related QOL using the 9-item PROMIS Global 7+2 HR-QOL instrument, as well as a 2-item instrument assessing parent/caregiver perspectives on the impact of the child's conditions on their own and the parent/caregiver's usual activities and routines |
Baseline, 3 months, 6 months |
|
| Primary |
Change in usability, as measured by the System Usability Scale (SUS) (provider) |
Provider report of experience and usability of the mobile app's provider dashboard using the 10-item SUS. This scale assesses participants' views of the usability of the app using a 5-point Likert scale from strongly agree to strongly disagree. Baseline version assesses their views on how usable they think the app will be, while the post version assesses their views on how usable the app actually was. |
Baseline, 6 months |
|
| Primary |
Net promoter score (NPS) (provider) |
Provider-reported degree to which they would recommend the mobile app for use by others. NPS is a single item that measures the loyalty of customers to a company. NPS scores are measured with a single-question survey and reported with a number from the range -100 to +100, a higher score is desirable. |
End of study (6 months) |
|
| Secondary |
Change in usability, as measured by the System Usability Scale (SUS) (parent/caregiver) |
Parent/caregiver report of experience and usability of the mobile app using the 10-item SUS. This scale assesses participants' views of the usability of the app using a 5-point Likert scale from strongly agree to strongly disagree. Baseline version assesses their views on how usable they think the app will be, while the post version assesses their views on how usable the app actually was. |
Baseline, 6 months |
|
| Secondary |
Change in caregiver strain, as measured by the Caregiver Strain Questionnaire (Short Form 7; CGSQ-SF7) |
Parent/caregiver report of degree of strain experienced as a result of their child's health with responses on a 5-point scale (1=not a problem at all; 5=very much a problem). |
Baseline, 3 months, 6 months |
|
| Secondary |
Change in confidence in avoiding hospitalization |
Parent/caregiver-reported confidence in ability to avoid unplanned hospitalization in the next one month |
Baseline, 3 months, 6 months |
|
| Secondary |
Net promoter score (NPS) (parent/caregiver) |
Parent/caregiver-reported degree to which they would recommend the mobile app for use by others. NPS is a single item that measures the loyalty of customers to a company. NPS scores are measured with a single-question survey and reported with a number from the range -100 to +100, a higher score is desirable. |
End of study (6 months) |
|
| Secondary |
Change in global health status |
Parent/caregiver report of their child's overall health status on a single item: 1 (poor) to 10 (excellent) numeric rating scale. |
Weekly, up to 6 months |
|
| Secondary |
Adoption (family engagement) |
Quantitative measurement of family engagement with the app, assessed by weekly app log-ins by families. |
Up to 6 months |
|
| Secondary |
Adoption (provider engagement) |
Quantitative measurement of provider engagement, assessed by count of views of EHR provider dashboard. |
Up to 6 months |
|
| Secondary |
Adoption (app prescriptions) |
Quantitative measurement of prescription of the app to patients, assessed by count of times mobile app prescribed by provider for use. |
Up to 6 months |
|
