Adolescent to Adult-Oriented Health Care Transition Survey: Study of a Video-Based Educational Intervention
Condition: Transition to Adult Health Care
Study type: Interventional

Summary: 
      Purpose: To understand the baseline knowledge on the transition of care to adult providers in
      hospitalized adolescent patients and to test if an educational intervention given during an
      inpatient stay in a medium size academic pediatric hospital affects perception of knowledge,
      attitudes and participation in transition planning.

      Primary Research Question: Will a video-based educational intervention in an academic
      pediatric hospital affect perception of knowledge, attitudes and participation in transition
      planning to adult oriented health care of the hospitalized adolescent?

      Secondary Research Question: What is the baseline experience of the hospitalized adolescent
      in key elements of transitioning to adult oriented health care?
    

Detailed description: 
      Purpose: To understand the baseline knowledge on the transition of care to adult providers in
      hospitalized adolescent patients and to test if an educational intervention given during an
      inpatient stay in a medium size academic pediatric hospital affects perception of knowledge,
      attitudes and participation in transition planning.

      Aim 1: To determine the effect of viewing a video-based educational intervention in an
      academic pediatric hospital affect perception of knowledge, attitudes and participation in
      transition planning to adult oriented health care of the hospitalized adolescent.

      Aim 2: To describe the baseline experience and knowledge base of hospitalized adolescents
      regarding key elements of transitioning to adult-oriented health care.

      CHARACTERISTICS OF THE RESEARCH POPULATION

        1. Number of subjects: There will be approximately 140 subjects assuming approximately 50%
           attrition by the third survey.

        2. Gender of Subjects: Subjects of either gender will be part of the study. Discrepancies
           in gender will be related to the patient population at the time of the study enrollment.

        3. Age of Subjects: The age range will be 15 to 25 years old.

        4. Racial and Ethnic Origin: There will be no enrollment restrictions based on race. It is
           expected that the racial distribution of our study population will mirror that of the
           inpatient pediatric patient population.

      Methods and Procedures:

      The purpose of the study will be achieved by surveying all eligible subjects admitted to the
      children's hospital. Eligible patients will be identified by the daily unit census in the
      children's hospital, excluding the patients outlined under exclusion criteria. Informed
      consent will be obtained from their parents and patients will assent to participate in the
      study. Personal health information and contact information will be collected with parents
      present by study investigator prior to randomization of subjects and will be stored
      separately from other survey data stored in a secure database on a password protected
      computer. All paper files will be kept in a locked office.

        1. At the time of enrollment patients will be stratified by age for block randomization in
           order to have balanced intervention and control groups. The age groups will be 15-16
           year old control or intervention group vs 17 years old and greater control or
           intervention group. Both groups will be asked to complete three surveys during the
           course of the study; in terms of education, the control groups will receive standard
           care education while the intervention group will view an educational video on transition
           from adolescent to adult oriented health care. All subjects will be oriented to the use
           of the Get Well Network in order to access the surveys via SurveyMonkey© (Palo Alto,
           CA). The first survey will consist of 40 questions. A number of first survey questions
           were obtained and modified from the web questionnaire of 2007 Survey of Adult Transition
           and Health (SATH) from Department of Health and Human Services, Maternal and Child
           Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA). Other
           questions from the Health-Care, Self Determination questionnaire packets relating to
           treatment self-regulation and perceived competence have been modified to focus on
           independence in health care management.

        2. After completing the first survey the intervention group subject will then be prompted
           via an embedded html link within the survey to watch a seven minute educational video.

        3. Prior to discharge from the hospital, participants in both groups will be asked to
           complete a second survey assessing willingness to prepare for the transition to adult
           oriented medical care, and actions taken during the hospital stay. Possible actions
           include taking a tour of an adult unit, discussing health insurance changes with a
           social worker, asking for a copy of a sample medical summary or requesting information
           about adult primary care and/or specialty providers. Patients will be given a reminder
           in person or via Facebook, phone, text or e-mail to complete the second survey via
           SurveyMonkey.

        4. Approximately 4 weeks after hospital discharge a reminder via Facebook, phone, text or
           e-mail will be sent to complete the third survey via SurveyMonkey©. If the subject does
           not have access to the internet, then the survey will be administered by phone.

      A retrospective chart review will be performed to record each subject's type of health
      insurance and chronic illness based on the medical chart from the current hospitalization.
      Comparison will be made between the patient's awareness of his underlying chronic illness and
      compared with health care providers' documentation of underlying chronic illness.

      Data Analysis and Monitoring Data will be statistically analyzed using descriptive statistics
      such as mean and standard deviation, chi square testing and regression analysis. Excel, SPSS
      and SAS will be used for statistical calculations. Dr. Keely Dwyer-Matzky , the principal
      investigator will be responsible for ensuring the privacy of the data. Since there is minimal
      risk a data and safety monitoring plan is not necessary.

      Data Storage and Confidentiality

      SurveyMonkey© is a confidential proprietary survey tool that collates quantitative data and
      written comments into convenient reports. SurveyMonkey© uses Secure Sockets Layer (SSL)
      technology, which protects user information through both server authentication and data
      encryption, ensuring that user data is safe, secure, and available only to authorized
      persons. Investigators will protect all health identifiers. Data downloaded from
      SurveyMonkey© will be maintained on electronic files on a secure server with password
      protection. Only authorized researchers will have access to the data. University of Rochester
      Office of Human Subjects or research regulatory groups may review these records.
    

Intervention name(s): Educational Video
Intervention type(s): Behavioral
Intervention description(s): The video highlights key elements found in the existing literature critical for transition including understanding and taking charge of their health, creating a medical summary, learning more about health insurance, introducing the idea of organizing a health care transition team and creating a plan. The video also educates patients on the opportunities to take a tour of an adult floor, talk with social workers and learn more about adult providers during their hospital stay.
Allocation: Randomized
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Health Services Research
Keywords: Hospitalized; adolescents; knowledge; transition; educational intervention