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Original Investigation |

Stakeholder Validation of a Model of Readiness for Transition to Adult Care

Lisa A. Schwartz, PhD1,2; Lauren D. Brumley, BA1; Lisa K. Tuchman, MD, MPH3,4; Lamia P. Barakat, PhD1,2; Wendy L. Hobbie, CRNP1; Jill P. Ginsberg, MD1,2; Lauren C. Daniel, PhD1; Anne E. Kazak, PhD1,2; Katherine Bevans, PhD1,2; Janet A. Deatrick, PhD5
[+] Author Affiliations
1The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
2Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
3Children’s National Medical Center, Washington, DC
4George Washington University School of Medicine and Health Sciences, Washington, DC
5University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania
JAMA Pediatr. 2013;167(10):939-946. doi:10.1001/jamapediatrics.2013.2223.
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Importance  That too few youth with special health care needs make the transition to adult-oriented health care successfully may be due, in part, to lack of readiness to transfer care. There is a lack of theoretical models to guide development and implementation of evidence-based guidelines, assessments, and interventions to improve transition readiness.

Objective  To further validate the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) via feedback from stakeholders (patients, parents, and providers) from a medically diverse population in need of life-long follow-up care, survivors of childhood cancer.

Design  Mixed-methods participatory research design.

Setting  A large Mid-Atlantic children’s hospital.

Participants  Adolescent and young adult survivors of childhood cancer (n = 14), parents (n = 18), and pediatric providers (n = 10).

Main Exposures  Patients and parents participated in focus groups; providers participated in individual semi-structured interviews.

Main Outcomes and Measures  Validity of SMART was assessed 3 ways: (1) ratings on importance of SMART components for transition readiness using a 5-point scale (0-4; ratings >2 support validity), (2) nominations of 3 “most important” components, and (3) directed content analysis of focus group/interview transcripts.

Results  Qualitative data supported the validity of SMART, with minor modifications to definitions of components. Quantitative ratings met criteria for validity; stakeholders endorsed all components of SMART as important for transition. No additional SMART variables were suggested by stakeholders and the “most important” components varied by stakeholders, thus supporting the comprehensiveness of SMART and need to involve multiple perspectives.

Conclusions and Relevance  SMART represents a comprehensive and empirically validated framework for transition research and program planning, supported by survivors of childhood cancer, parents, and pediatric providers. Future research should validate SMART among other populations with special health care needs.

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Figure 1.
Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) Model
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Figure 2.
Ratings of Importance of Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) Components by Stakeholder Group

Ratings were made on a 5-point scale (0 = not at all; 4 = extremely). Access/Ins indicates access/insurance; Belief/Exp, beliefs/expectations; Development, developmental maturity of the patient; Goal/Motiv, goals/motivation; Med/Risk, medical status/risk; Neurocog, neurocognition/IQ; Psychosocial, psychosocial functioning/emotions; Relation/Comm, relationships/communication; Skills/Self-Eff, skills/efficacy; and Socio/Culture, sociodemographics/culture.

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Figure 3.
Comparison Between Patient, Parent, and Provider Nominations of Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) Components as a “Most Important” Component

Participants nominated up to 3 SMART components as “most important.” Access/Ins indicates access/insurance; Belief/Exp, beliefs/expectations; Development, developmental maturity of the patient; Goal/Motiv, goals/motivation; Med/Risk, medical status/risk; Neurocog, neurocognition/IQ; Psychosocial, psychosocial functioning/emotions; Relation/Comm, relationships/communication; Skills/Self-Eff, skills/efficacy; and Socio/Culture, sociodemographics/culture.

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