Not your parent’s health care: Adolescent perspectives on patient-centered care April 27, 2015 Elizabeth Uy-Smith1 MD MPH MAS Hayley Lofink Love2 PhD MSc Ryan Padrez3 MD Tara Trudnak Fowler 4PhD MPH CPH Kevin Koenig 5MPP Gary Fairbrother6 PhD Claire D. Brindis7 DrPH 1UCSF Department of Family and Community Medicine, 2School-Based Health Alliance, 3UCSF Department of Pediatrics, UCSF Benioff Children’s Hospital, 4Altrarum Institute (formerly at AcademyHealth), 5NORC at the University of Chicago (formerly at AcademyHealth), 6AcademyHealth, 7UCSF Philip R. Lee Institute for Health Policy Studies, Department of Pediatrics, Division of Adolescent Medicine, UCSF Benioff Children’s Hospital

Presenter Disclosures No relationships to disclose.

Background: Patient-Centered Care Patient-centeredness1: Established partnership between patients and the health care system that “respects patients’ wants, needs, and preferences” Little is known about adolescent perceptions of patient-centered health care. Missed opportunities to engage adolescents in health care. 1Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. National Academy Press; 2001

Study Objective To identify common characteristics of patient-centeredness among adolescent patients who access care in multiple settings, in order to better define adolescent-centered care. What we really wanted to know was…

Methods: Focus Groups 12 adolescent focus groups: Participants accessed health care from multiple settings Locations: New Haven and New London, Connecticut (CT) Cooperstown and the Bronx, New York (NY) Albuquerque and Española, New Mexico (NM) 6 male and 6 female groups Ages 14-19 years old

Methods: Analysis Performed secondary analysis of the de-identified qualitative data from the 12 focus groups Coded and analyzed the transcripts to identify adolescent priorities in health care

ADOLESCENT-SPECIFIC PILLARS Results ADOLESCENT-CENTERED HEALTH CARE PRIMARY CARE PILLARS ADOLESCENT-SPECIFIC PILLARS

ADOLESCENT-CENTERED HEALTH CARE PRIMARY CARE PILLARS ACCESS ACCESS: “It’s convenient because it’s like they’re in school, you don’t have to leave and come back.”

ADOLESCENT-CENTERED HEALTH CARE PRIMARY CARE PILLARS CONTINUITY CONTINUITY: “It’s somebody you’ve known, somebody you trust a lot more.”

ADOLESCENT-CENTERED HEALTH CARE PRIMARY CARE PILLARS COMPREHENSIVENESS COMPREHENSIVENESS: “I don’t go anywhere else. I get everything right here.”

ADOLESCENT-CENTERED HEALTH CARE PRIMARY CARE PILLARS COORDINATION COORDINATION: “I think that would be a good idea for them to talk to each other.”

ADOLESCENT-SPECIFIC PILLARS ADOLESCENT-CENTERED HEALTH CARE ADOLESCENT-SPECIFIC PILLARS CONFIDENTIALITY CONFIDENTIALITY: “I know that they’re not going around telling everybody.”

ADOLESCENT-SPECIFIC PILLARS ADOLESCENT-CENTERED HEALTH CARE ADOLESCENT-SPECIFIC PILLARS AUTONOMY AUTONOMY: “[When I leave high school] I’m not going to be like, oh my gosh, I don’t know how to schedule an appointment.”

ADOLESCENT-SPECIFIC PILLARS ADOLESCENT-CENTERED HEALTH CARE ADOLESCENT-SPECIFIC PILLARS RELATABILITY RELATABILITY to providers: “It’s like you can actually relate to them.”

ADOLESCENT-SPECIFIC PILLARS ADOLESCENT-CENTERED HEALTH CARE ADOLESCENT-SPECIFIC PILLARS TECHNOLOGY TECHNOLOGY: “She texts me when I have appointments and it helps a lot.”

ADOLESCENT-SPECIFIC PILLARS ADOLESCENT-CENTERED HEALTH CARE PRIMARY CARE PILLARS ADOLESCENT-SPECIFIC PILLARS ACCESS CONTINUITY COMPREHENSIVENESS COORDINATION RELATABILITY CONFIDENTIALITY AUTONOMY TECHNOLOGY

Conclusions Similar to previous research on patient-centeredness among younger children and adults. Distinctive to adolescent-centered care delivery, adolescents expressed the need for confidentiality, personal autonomy, relatability to providers, and use of technology.

Limitations Limited to adolescents with access to health services at school-based health centers. Individual-level characteristics of focus group participants were not collected.

Implications Critical to the success of the ACA is the need to engage adolescents with the health care system. A clearer definition of adolescent-centered care may direct future research, target delivery models, and develop policies to better connect adolescents to health services.

UCSF Primary Care Research Fellowship, Acknowledgments Acknowledgements UCSF Primary Care Research Fellowship, NRSA T32HP19025 Aetna Foundation Linda Juszczak