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This pilot intervention study will test the feasibility and acceptability and explore the outcomes of a primary care-based shared decision making (SDM) electronic medical record (EMR)-based portal that provides education, elicits and tracks patients/families' treatment concerns and goals, assesses symptoms and asthma control over time, and provides decision support to clinicians and families.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention | Experimental | Parents in the intervention group will use the MyAsthma Patient Portal to receive enhanced educational information on asthma and its treatment, identify concerns and goals related to asthma treatment, track progress toward goals and management of concerns monthly, and track asthma symptoms monthly. Clinicians seeing intervention families at office visits will have access to information from the portal including concerns, goals, progress toward goals, and tracking of asthma symptoms. |
|
| Control | No Intervention | The control group will be signed up for MyChart but not use the MyAsthma Patient Portal. This group will be referred to asthma educational content on the CHOP website, complete study measures and otherwise, receive standard care. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| MyAsthma Patient Portal | Other | Parents in the intervention group will use the MyAsthma Patient Portal to receive enhanced educational information on asthma and its treatment, identify concerns and goals related to asthma treatment, track progress toward goals and management of concerns monthly, and track asthma symptoms monthly. Clinicians seeing intervention families at office visits will have access to information from the portal including concerns, goals, progress toward goals, and tracking of asthma symptoms. |
| Measure | Description | Time Frame |
|---|---|---|
| Acceptability of the intervention to parents and clinicians | Parents and clinicians will be asked a series of open-ended questions regarding themes including satisfaction, acceptability and unintended consequences of using the portal for intervention subjects and using MyChart in general for control subjects. Subjects will also be asked a series of Likert-scaled questions related to satisfaction. | 24 months |
| Measure | Description | Time Frame |
|---|---|---|
| Shared decision making | Joint participation in decision-making will be measured by the Observing Parent Involvement (OPTION) scale. | Baseline |
| Parent Activation | Parent activation will be measured by the Parent Patient Activation Measure (PPAM). |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Alexander G Fiks, MD, MSCF | Children's Hospital of Philadelphia | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| The Children's Hospital of Philadelphia | Philadelphia | Pennsylvania | 19104 | United States |
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| ID | Term |
|---|---|
| D001249 | Asthma |
| ID | Term |
|---|---|
| D001982 | Bronchial Diseases |
| D012140 | Respiratory Tract Diseases |
| D008173 | Lung Diseases, Obstructive |
| D008171 | Lung Diseases |
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|
| 0 months, 3 months, 6 months |
| Goal Attainment | Parents will identify one or more goals at the study start. Progress toward the goal(s) will be assessed at 3 and 6 month follow-up using Likert-scaled items for the control group, and monthly through use of the portal for the intervention group. | 0 months, 3 months, 6 months then Monthly |
| Asthma-Related Quality of Life | Asthma-related quality of life will be measured using The Integrated Therapeutics Group Child Asthma Short Form (ITG-CASF) | 0 months, 6 months |
| Asthma Control | Asthma control will be assessed using the Pediatric Asthma Control Tool (PACT) | 0 months, 6 months |
| Asthma-related Utilization | Utilization will be measured by parent report and chart review by the research team of the following: Any primary care or subspecialty outpatient encounters relevant to asthma care, asthma-specific acute primary care visits or Urgent Care Center visits, asthma-specific Emergency Room visits, asthma-specific hospital admissions. | 3 months, 6 months |
| Asthma Medication Adherence/Receipt | Prescribed medications for the treatment and management of asthma Type and number of prescriptions for asthma | 6 months |
| Feasibility of Recruitment | The feasibility of recruitment will be assessed by examining the proportion of all families contacted who meet enrollment criteria and the proportion of families meeting enrollment criteria who enroll. | 24 months |
| Feasibility of Follow-up | The feasibility of follow-up will be assessed by the proportion of enrolled families who complete each study measure. | 24 months |
| Feasibility of Portal Use | The feasibility of portal use will be assessed by the level of research team/other outside support needed. | 24 months |
| D012130 |
| Respiratory Hypersensitivity |
| D006969 | Hypersensitivity, Immediate |
| D006967 | Hypersensitivity |
| D007154 | Immune System Diseases |