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Center for Adherence Promotion and Self-Management

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Graduate Training

Drotar Lab

Description of Initiatives
This is a new position in a new Center that has been developed to facilitate research, training, and clinical care to promote adherence to medical treatment in pediatric chronic illness.  Nonadherence to medical treatment has been recognized as a priority area for research in the field of pediatric and child health psychology and by the National Institutes of Health.

This position will involve work with faculty in the Center for Treatment Adherence to facilitate the analysis and summary of information from available data sets and facilitate the writing of manuscripts for publication based on these data sets. Students will also participate in the relevant seminars of the Center for Treatment Adherence. The placement will involve supervised experiences in data management and analysis of cross-sectional and prospective data using multiple measures from different informants. Students will gain experience in writing manuscripts for peer reviewed journals. Opportunities for co-authorship of manuscripts are available depending on the nature of contribution to the manuscripts. Opportunities are available for working with various data sets. Some examples include the following:

Pediatric Asthma

Inner City Asthma Study: Data from prospective randomized trial (one year follow-up) of problem solving intervention to promote adherence to treatment among economically disadvantaged, African-American children and adolescents with chronic asthma. Manuscript focus on the prediction of trajectories of adherence to treatment over time.

Type 1 Diabetes in Children and Adolescents

Pediatric Diabetes and Family (PDF) Study This data set contains child and family functioning variables that are general and diabetes-specific (type 1). It also contains biologic and adherence data. Studies will involve examining the diagnostic interview data or other associations among these variables.

Hommel Lab

Advanced graduate students may have the opportunity to participate in clinical trials currently being conducted in our lab. These experiences vary across studies, and include the following:

  1. Family based group behavioral treatment of nonadherence in inflammatory bowel disease (IBD)
  2. Individually-tailored behavioral treatment of nonadherence in IBD
  3. Telehealth intervention to improve adherence in patients with IBD and patients with cystic fibrosis

Additional opportunities such as manuscript preparation and submission and treatment manual development exist depending on trainee interest and skill set.

Hood Lab

Opportunities for clinical research experiences cut across all aspects of the clinical research process. Graduate students typically are able to observe and/or conduct study visits that include interviewing adolescent participants and family members and administering questionairres. There are opportunities for data analysis and manuscript writing as well. Graduate students will also have access to the behind-the-scenes work of writing protocols for IRB review, chart reviews, and data management - all key components of the research process. There may also be opportunities to develop original research within the lab; presently, a master's thesis and doctoral dissertation are being conducted by graduate students working in our lab.

Modi Lab

Adherence and Barriers in Children with Epilepsy: This is an ongoing longitudinal study examining adherence with electronic monitors and self-report over a 2-year period of time, as well as factors that predict/influence adherence.  Data collection includes measures of family functioning, barriers to adherence, parenting stress, family stress related to epilepsy, epilepsy knowledge, behavioral and emotional functioning, social stigma, generic and epilepsy-specific health-related quality of life, antiepileptic drug side effects, epilepsy specific concerns and fears. Graduate students or residents could become involved in a variety of ways:

  1. Data collection in a clinic-based setting/environment
  2. Analysis of baseline data and manuscript preparation depending on subject of interest (e.g., can choose constructs)
  3. Learning about and analyzing data involving population pharmacokinetic models and electronically measured adherence

Evaluating Clinical Outcomes of Children with New-Onset Seizure Disorders: This study involves a retrospective chart review of health-related quality of life data for patients seen through the new-onset seizure clinic. PedsQL questionnaires are completed by parents at each visit, resulting in longitudinal HRQOL data from pre-treatment through the course of treatment (e.g., every 3 months). We have entered data for approximately 600 patients with repeat visits for several of these patients. There are multiple opportunities to become involved in data analyses and manuscript preparation.

Pai Lab

Dr. Pai and the members of her lab are working to develop key family process variables that are related to treatment adherence and medical outcomes in the pediatric transplant populations. To this end Dr. Pai is conducting three studies in her lab. A description of each and the opportunities for trainees to participate in these projects are described below.

Promoting Treatment Adherence in Pediatric Transplant: Nonadherence is a critical problem in the pediatric renal transplant population. The rate of nonadherence to posttransplant medical regimens is, on average, estimated to be 50% and the clinical consequences associated with nonadherence are severe including lower long term survival rates and graft loss. Despite the fact that poor adherence has long been recognized and the consequences of nonadherence severe, the etiologic factors that contribute to nonadherence in children with kidney transplants are not well understood. Research with other pediatric populations suggests that family functioning is a critical and modifiable factor in treatment adherence.

We are particularly interested in how families allocate treatment responsibilities. Allocation of treatment responsibility is defined as the way in which families distribute the tasks of a medical regimen in order to effectively and successfully complete a prescribed treatment regimen task. We are currently conducting a study to develop a measure of allocation of treatment responsibility. The study has two phases.  In the first phase we conducted structured interviews with children with renal transplants and their families to understand how families manage all aspects of their treatment regimen.  Information from these interviews was qualitatively analyzed and the information derived from the interviews were used to develop a standardized measure o allocation of treatment responsibility. The second phase of the study is testing the psychometric properties of the Allocation of Treatment Responsibility measure developed in Phase 1.

Trainee opportunities: There are a number of training opportunities on this project including conducting qualitative data analysis, generating original research questions to explore in the existing qualitative data base, learning how to conduct chart reviews, analyzing quantitative data, and preparing manuscripts.

Impact of Clinic Attendance on Health Outcomes in Pediatric Renal Transplant: Chart reviews for patients who have received a renal transplant in the last 10 years will be conducted to determine if attendance at clinic appointments is related to health outcomes. We will also examine available demographic factors to determine whether there are health care disparities with regard to attendance at clinic visits.

Trainee opportunities: Training opportunities on this project include collecting data from electronic medical records, quantitative data analysis, generating original research questions for the project and producing a research product (poster/paper) on that project.

Documenting adherence in stem cell transplant patients:A new project will be starting in a couple of months to study the rates of adherence in stem cell transplant patients. When patients are discharged from the hospital following their stem cell transplant they are asked to follow a strict, multi component treatment regiment including administration of multiple medications, activity restrictions and regular clinic visits. Virtually nothing is known about regarding adherence to the outpatient treatment regimens. The collection of pilot data will begin in the next couple of months.

Trainee opportunities: Collecting data via home visits, conducting chart reviews, generating original research questions and hypotheses to be addressed by the study which could subsequently be used for a research product (thesis, dissertation, poster, paper), and contributing to the grant writing process.