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| ID | Type | Description | Link |
|---|---|---|---|
| 1K23HL175237-01A1 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| National Heart, Lung, and Blood Institute (NHLBI) | NIH |
| Children's Hospital of Philadelphia | OTHER |
| Yale-New Haven Children's Hospital | UNKNOWN |
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The goal of this interventional study is to learn about the impact of an intervention for health care providers that teaches individuation and perspective-taking (IPT) skills to enhance patient-centered communication in pediatric sickle cell disease (SCD). The main question it aims to answer is:
Does an intervention that teaches individuation and perspective-taking (IPT) skills to pediatric sickle cell disease (SCD) health care providers (HCPs) enhance patient-centered communication?
Researchers will compare the IPT intervention to a control group who will receive education about SCD pain management to see if the IPT intervention improves patient-centered communication.
Participants will complete baseline surveys and then be randomly assigned into the intervention or control group. After completing their assigned session (IPT training or education), they will be asked to complete the same surveys as completed at baseline.
Research documents poor health outcomes for youth with sickle cell disease (SCD), and interventions for patients and families demonstrate only variable effectiveness. More recent studies have called for interventions targeting health care providers (HCPs) to improve patient health outcomes. The investigators developed and piloted an individuation and perspective-taking (IPT) intervention for pediatric SCD HCPs.
IPT currently consists of one 90-minute virtual training session that incorporates didactic education and practice using the IPT skills in the context of SCD patient stories. After reviewing didactic information about the impact of patient-centered communication on patient health behaviors (e.g., adherence), HCPs are introduced to the two IPT skills and taught how to practice them by changing their communication with patients. HCPs then watch short videos that are publicly available online depicting 3-5 patients with SCD that differ in demographics and symptom presentation. The intervention facilitator uses verbal prompts (e.g., How do the participants think that patient must be feeling?) to assist HCPs in applying the IPT skills to each of these patients. Finally, the facilitator leads a discussion about HCP responses that are and are not consistent with the IPT skills and explores ways HCPs can apply the skills in their clinical practice. This single-session virtual format was well-received and deemed feasible by HCPs in the investigators' formative work, who expressed concerns about attending multiple sessions.
The primary objective is to test the preliminary efficacy of the IPT intervention on improving patient-centered communication in a multi-center sample of pediatric SCD HCPs using a randomized design. HCPs from three medical centers will be randomized to the IPT intervention or to a didactic information control group, completing pre- and post-test measures to assess changed in patient-centered communication.
The investigators hypothesize that the IPT intervention will have positive effects on HCP communication and has the potential to impact patient-reported (e.g., trust, satisfaction with care, and self-efficacy) and clinical health (e.g., pain management, frequency of admission, hydroxyurea adherence) outcomes for adolescents with SCD. Improving HCPs patient-centered communication may increase patients' disease management self-efficacy, thereby improving adherence to preventative measures and reducing the frequency of emergent encounters and hospital admissions.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Individuation Perspective-Taking (IPT) Intervention | Experimental | Health care provider participants will attend a virtual session presenting the IPT intervention. |
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| Educational Control Group | Active Comparator | Health care provider participants will attend a virtual presentation on didactic information about best practices in pediatric SCD pain management. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Individuation and Perspective-Taking (IPT) | Behavioral | IPT currently consists of one 90-minute virtual training session that incorporates didactic education and practice using the IPT skills in the context of SCD patient stories. After reviewing didactic information about the impact of patient-centered communication on patient health behaviors (e.g., adherence), HCPs are introduced to the two IPT skills and taught how to practice them by changing their communication with patients. HCPs then watch short videos that are publicly available online depicting 3-5 patients with SCD that differ in demographics and symptom presentation. The intervention facilitator uses verbal prompts (e.g., How do participants think that patient must be feeling?) to assist HCPs in applying the IPT skills to each of these patients. Finally, the facilitator leads a discussion about HCP responses that are and are not consistent with the IPT skills and explores ways HCPs can apply the skills in their clinical practice. |
| Measure | Description | Time Frame |
|---|---|---|
| Adapted Measure of Patient-Centered Communication (MPCC) | The adapted Measured of Patient-Centered Communication (MPCC) is an observer-scored set of indices that assesses patient-centered communication during clinic visits. In this adapted version, Individuation and Perspective-Taking are two additional components that will be scored, along with the six components of the Patient-Centered Clinical Method. Each of these components has been operationalized to be reliably scored by independent raters. For each patient video, the participant's communication will be scored for the presence/absence of each of these 8 components. Thus, a given patient video will be summarized using a total score ranging from 0 to 8, with higher scores reflecting greater patient-centered communication. For this study, two independent reviewers (the PI and RA) will score participants' responses to each patient video for the 8 components. | From enrollment to up to 6 weeks post-intervention/control |
| Measure | Description | Time Frame |
|---|---|---|
| Interpersonal Reactivity Index (IRI) | The Interpersonal Reactivity Index (IRI) is a 28-item self-report measure used to assess four facets of empathy with four subscales (7 items each): Perspective-Taking (adopting the point of view of others), Empathic Concern (feeling sympathy and concern), Fantasy (ability to imagine the feelings of fictitious characters), and Personal Distress (feeling anxiety/unease during tense interpersonal situations). Responses are given on a 5-point Likert scale and summed for a total score ranging from 0-112, with higher scores indicating greater perceived empathy (better outcome). The IRI has been used to assess empathy in medical students and HCPs. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Siddika Mulchan, PsyD | Contact | 860-545-8122 | smulchan@connecticutchildrens.org | |
| Christopher Theriault, MA | Contact | 860-837-5852 | ctheriault@connecticutchildrens.org |
| Name | Affiliation | Role |
|---|---|---|
| Siddika Mulchan, PsyD | Connecticut Children's Medical Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Connecticut Children's Medical Center | Hartford | Connecticut | 06106 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 26490488 | Background | Maatouk-Burmann B, Ringel N, Spang J, Weiss C, Moltner A, Riemann U, Langewitz W, Schultz JH, Junger J. Improving patient-centered communication: Results of a randomized controlled trial. Patient Educ Couns. 2016 Jan;99(1):117-24. doi: 10.1016/j.pec.2015.08.012. Epub 2015 Aug 14. | |
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Data will be aggregated for all study analyses.
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| pediatric SCD pain management education session | Other | The SCD pain management education session currently consists of one 90-minute virtual presentation that focuses on best practices in pediatric SCD pain management, including published guidelines from the American Society of Hematology. |
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| From enrollment to up to 6 weeks post-intervention/control |
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| 24742787 | Background | Haywood C Jr, Diener-West M, Strouse J, Carroll CP, Bediako S, Lanzkron S, Haythornthwaite J, Onojobi G, Beach MC; IMPORT Investigators; IMPORT Investigators. Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease. J Pain Symptom Manage. 2014 Nov;48(5):934-43. doi: 10.1016/j.jpainsymman.2014.02.002. Epub 2014 Apr 15. |
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| 24224021 | Background | Darbari DS, Wang Z, Kwak M, Hildesheim M, Nichols J, Allen D, Seamon C, Peters-Lawrence M, Conrey A, Hall MK, Kato GJ, Taylor JG 6th. Severe painful vaso-occlusive crises and mortality in a contemporary adult sickle cell anemia cohort study. PLoS One. 2013 Nov 5;8(11):e79923. doi: 10.1371/journal.pone.0079923. eCollection 2013. |
| 33617594 | Background | Kidwell K, Albo C, Pope M, Bowman L, Xu H, Wells L, Barrett N, Patel N, Allison A, Kutlar A. Characteristics of sickle cell patients with frequent emergency department visits and hospitalizations. PLoS One. 2021 Feb 22;16(2):e0247324. doi: 10.1371/journal.pone.0247324. eCollection 2021. |
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| 31135428 | Background | Tanabe P, Spratling R, Smith D, Grissom P, Hulihan M. CE: Understanding the Complications of Sickle Cell Disease. Am J Nurs. 2019 Jun;119(6):26-35. doi: 10.1097/01.NAJ.0000559779.40570.2c. |
| 17503111 | Background | Burgess D, van Ryn M, Dovidio J, Saha S. Reducing racial bias among health care providers: lessons from social-cognitive psychology. J Gen Intern Med. 2007 Jun;22(6):882-7. doi: 10.1007/s11606-007-0160-1. Epub 2007 Mar 3. |
| 24935607 | Background | Haywood C Jr, Bediako S, Lanzkron S, Diener-West M, Strouse J, Haythornthwaite J, Onojobi G, Beach MC; IMPORT Investigators. An unequal burden: poor patient-provider communication and sickle cell disease. Patient Educ Couns. 2014 Aug;96(2):159-64. doi: 10.1016/j.pec.2014.05.013. Epub 2014 May 23. |
| 32219405 | Background | Farooq F, Mogayzel PJ, Lanzkron S, Haywood C, Strouse JJ. Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity. JAMA Netw Open. 2020 Mar 2;3(3):e201737. doi: 10.1001/jamanetworkopen.2020.1737. |
| 31410784 | Background | Jabour SM, Beachy S, Coburn S, Lanzkron S, Eakin MN. The Role of Patient-Physician Communication on the Use of Hydroxyurea in Adult Patients with Sickle Cell Disease. J Racial Ethn Health Disparities. 2019 Dec;6(6):1233-1243. doi: 10.1007/s40615-019-00625-5. Epub 2019 Aug 13. |
| 23576243 | Background | Chapman EN, Kaatz A, Carnes M. Physicians and implicit bias: how doctors may unwittingly perpetuate health care disparities. J Gen Intern Med. 2013 Nov;28(11):1504-10. doi: 10.1007/s11606-013-2441-1. Epub 2013 Apr 11. |
| 32552526 | Background | Cronin RM, Yang M, Hankins JS, Byrd J, Pernell BM, Kassim A, Adams-Graves P, Thompson AA, Kalinyak K, DeBaun M, Treadwell M. Association between hospital admissions and healthcare provider communication for individuals with sickle cell disease. Hematology. 2020 Dec;25(1):229-240. doi: 10.1080/16078454.2020.1780737. |
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| 29693797 | Background | Anderson LM, Leonard S, Jonassaint J, Lunyera J, Bonner M, Shah N. Mobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality of life. Pediatr Blood Cancer. 2018 Aug;65(8):e27081. doi: 10.1002/pbc.27081. Epub 2018 Apr 25. |
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| ID | Term |
|---|---|
| D000755 | Anemia, Sickle Cell |
| ID | Term |
|---|---|
| D000745 | Anemia, Hemolytic, Congenital |
| D000743 | Anemia, Hemolytic |
| D000740 | Anemia |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D006453 | Hemoglobinopathies |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
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