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The study team will conduct a mixed methods evaluation of the implementation of an evidence-based clinical program -- the Pediatric Complex Care Integration (PCCI) program - for improvement of care integration for children and youth with special healthcare needs (CYSHCN) and children with medical complexity (CMC). The PCCI program is not a discrete intervention itself; rather it is a health system-initiated program that will be implemented as a new standard of care for eligible patients with the intention of improving quality of care, implemented by clinical teams within Duke Health.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Parents/caregivers | Parents/caregivers of children <20 years old who received interdisciplinary care coordination within the Pediatric Complex Care Integration (PCCI) program |
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| Clinical staff | PCCI care management staff participating in implementation of the PCCI program |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Surveys | Other | Parent/caregivers participants will complete multiple repeating surveys to gather family-reported perspectives on the impact of the PCCI care management program. Clinical staff participants will complete multiple repeating surveys that gather clinician perspectives on the impact of the PCCI care management program. Parent/caregiver and clinical staff participants will also be invited to participated in one-on-one semi-structured interviews with the study team. |
| Measure | Description | Time Frame |
|---|---|---|
| Change in care fragmentation, as measured by the Pediatric Integrated Care Survey (PICS) | The PICS is a 20-item survey that gathers parents perspectives on the degree of care integration received by their child using a 6-level Likert scale (1=never; 6=always). | Baseline, 6 months, 12 months |
| Change in child health-related quality of life (HR-QOL), as measured by the PROMIS (7+2) Parent Proxy Global Health Survey | The PROMIS (7+2) Pediatric Global Health Survey is a 9-item parent-reported survey that gathers parent perspectives on their child's overall HR-QOL. Four of the 9 survey items use a 5-level Likert scale with 1=poor and 5=excellent; three of the 9 survey items use a 5-level Likert scale with 1=never and 5=always; and three of the 9 survey items use a 5-level Likert scale with 1=never and 5=almost always. | Baseline, 3 months, 6 months, 9 months, 12 months |
| Change in parent health-related quality of life (HR-QOL), as measured by the PROMIS Global Health Survey | The PROMIS Global Health Survey is a 10-item parent-reported survey that gathers parent perspectives on their own overall HR-QOL. Six of the 9 survey items use a 5-level Likert scale with 1=poor and 5=excellent; one of the 9 survey items uses a 5-level Likert scale with 1=not at all and 5=completely; one of the 9 survey items uses a 5-level Likert scale with 1=never and 5=always; one of the 9 survey items uses a 5-level Likert scale with 1=none and 5=very severe; and one of the 9 survey items uses a 0-10 scale (0=no pain; 10=worst pain imaginable). | Baseline, 3 months, 6 months, 9 months, 12 months |
| Change in well-being, as measured by the Well-Being Index (WBI) | The Well-Being Index is a 9-time clinical provider/staff-reported measure that gathers staff perceptions of their overall well-being at work. Seven of the 9 survey items use a dichotomous response (Yes/No) and two remaining items use 7-level Likert scale (1=very strongly disagree; 7=very strongly agree). |
| Measure | Description | Time Frame |
|---|---|---|
| Change in caregiver self-management, as measured by the Parent-Patient Activation Measure (P-PAM) | The Parent-Patient Activation Measure (P-PAM) is a 13-item parent-reported survey that uses a 4-level Likert scale (1=disagree strongly; 4=agree strongly). | Baseline, 3 months, 6 months, 12 months |
| Change in perceptions of barriers to care, as measured by the Barriers to Care Questionnaire (BCQ) |
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Inclusion criteria for children and parents/caregivers:
Exclusion criteria for children and parents/caregivers: children/parents will be excluded if they meet the below criteria:
Inclusion criteria for clinical staff and providers (participation in interviews and quantitative staff/provider-reported surveys):
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Adult parents/caregivers of children/youth who have primary care attributed to Duke Pediatrics Primary Care - Roxboro Road clinic and are receiving complex care management within the PCCI clinical program.
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| Name | Affiliation | Role |
|---|---|---|
| David Y Ming, MD | Duke Health | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Duke University | Durham | North Carolina | 27705 | United States |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| D007407 | Interviews as Topic |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| Baseline, 3 months, 6 months, 12 months |
The 19-item Barriers to Care Questionnaire (BCQ) gathers parent perspectives on barriers encountered when trying to get health care for their child. The BCQ uses a 5-level Likert scale (0=never; 4=almost always). |
| Baseline, 12 months |
| Change in perceptions of cultural distance, as measured by the Cultural Distance Scale (CDS) | The 4-item Cultural Distance Scale (CDS) is a parent-reported survey that uses a 6-level Likert scale (1=very similar; 6=very different). | Baseline, 12 months |
| Changes in caregiver self-efficacy, as measured by the New Generalized Self-Efficacy Scale (NGSE) | The 8-item New Generalized Self-Efficacy Scale is a parent-reported survey uses a 5-level Likert scale (1=strongly disagree; 5=strongly agree). | Baseline, 3 months, 6 months, 9 months, 12 months |
| Changes in perceptions of shared decision-making, as measured by the a sub-scale from the Interpersonal Processes of Care survey | This 4-item sub-scale from the Interpersonal Processes of Care survey focuses on perceptions of shared-decision making. Parents respond to questions on a 5-level Likert scale (1=never; 5=always). | 3 months, 6 months, 9 months, 12 months |
| Feasibility, as measured by clinical staff survey | Perceptions of the feasibility of implementation of the PCCI care management program, as measured by the Feasbility of Intervention Measure (FIM) | 12 months |
| Acceptability, as measured by clinical staff survey | Perceptions of the acceptability of implementation of the PCCI care management program, as measured by the Acceptability of Intervention Measure (AIM) | 12 months |
| Appropriateness, as measured by clinical staff survey | Perceptions of the appropriateness of implementation of the PCCI care management program, as measured by the Intervention Appropriateness Measure (IAM) | 12 months |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |