Chronic Lung Disease
Conditions
Brief summary
The goal of this pilot study is to test the feasibility and acceptability of a collaborative goal setting intervention to improve parent engagement of Black preterm infants with chronic lung disease in primary care. Preliminary impact on child and parent outcomes will also be explored. The main questions it aims to answer are: 1) Will parents complete a pre-visit questionnaire that asks about goals for the child? 2) Does use of the pre-visit questionnaire help parents to achieve self-identified goals? Participants will fill out a pre-visit questionnaire prior to the child's well visit. The participants will then complete two surveys after the visit (1 week and 2 months after).
Interventions
BEHAVIORALP-CGS (Pediatric Collaborative Goal Setting)
Electronic questionnaire sent to participants ahead of a pediatric primary care well child visit, assessing goals for themselves and the child's health with prompt to share with providers during visit
Sponsors
Johns Hopkins University
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Parent/legal guardian of child born prior to 37 weeks gestational age * Parent/legal guardian of child with diagnosis of chronic lung disease or bronchopulmonary dysplasia, as defined by the child's clinical team at the time of hospital discharge * Parent/legal guardian of child who identifies that child's race as Black * English speaking
Exclusion criteria
* Parent/legal guardian of child enrolled in palliative care or hospice services at time of hospital discharge * Parent/legal guardian of child older than 12 months chronological age
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Feasibility as measured by number of interventions completed | Day 0 | Number of participants who complete the pediatric collaborative goal setting intervention out of the number of consented participants who are sent a link prior to the child's well visit |
| Feasibility as measured by the time it takes participant to complete intervention | Day 0 | Amount of time (minutes) that participant has the pediatric collaborative goal setting intervention open |
| Feasibility as measured by the number of goals submitted by each participant | Day 0 | Number of goals submitted by each participant through the pediatric collaborative goal setting intervention |
| Acceptability of the intervention as assessed by the Acceptability of Intervention Measure (AIM) scale | Day 7 post-intervention | Measured by the Acceptability of Intervention Measure (AIM) scale - a 4 item survey with 5 point Likert scales from Completely Disagree to Completely Agree. Score ranges from 4 to 20, where higher scores indicate greater acceptability. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Goal attainment as assessed by number of goals submitted | Day 60 post-intervention | Number of goals submitted as part of pediatric collaborative goal setting that were accomplished by participant since intervention |
| Participation activation as measured by Parent Patient Activation Measure 10 | Day 60 post-intervention | Measured by the Parent Patient Activation Measure scale - a 7 item survey with 4 point Likert scales (total score range 7-28) from Disagree Strongly to Agree Strongly with higher scores indicating a better outcome. |
| Participant's child's respiratory symptoms as measured by self-report | Day 60 post-intervention | Frequency of rescue inhaler use and symptoms of wheezing, rated on 5 point Likert scale (total score range 1-5) from Never to Every day with higher scores indicating more use and worse outcome. This is a survey instrument constructed by the study team. |
| Participant's child's use of the emergency department for breathing symptoms as measured by self-report | Day 60 post-intervention | Frequency of emergency department visits, rated on 5 point Likert scale (total score range 1-5) from Never to Every day with higher scores indicating more use and worse outcome. This is a survey instrument constructed by the study team. |
Contacts
CONTACTBrandon M Smith, MD MPH
PRINCIPAL_INVESTIGATORBrandon M Smith, MD MPH
Johns Hopkins School of Medicine
Outcome results
None listed