The Good Patient Study

NCT02199548 | Completed

• 1 other identifier: GPS14
• Study Type: observational
• Target: 43
• Locations: 1 country
• Sites: 2

Brief Summary

Adolescents with cancer weigh multiple influences in medical decision-making, including their own best interest, the perceived wishes of family members, and the interpreted preferences of the health care team. Parents of children with cancer often describe themselves as trying to be a good parent in making decisions in the child's best interest. Adolescents with cancer often describe themselves as trying to be a good patient and good child in making decisions in accord with how they believe a good patient and good child would decide. Among the challenges of caring for adolescents is the reality that the formative relational influences in adolescents' decision-making are both complex and unique due to adolescent patients' social networks and relational roles. Delineating adolescents' definitions of being a good patient, a good child, a good sibling, and a good friend may enable the care team to better understand the formative decisional influences relevant to adolescents with cancer. Expanding knowledge about the decision making constructs relevant to adolescents with cancer and recognizing the role of these social constructs in medical interactions has the potential for development of a comprehensive care model that methodically evaluates the self-assessed decision making influences and needs of adolescents at various stages in oncology care. This qualitative construct-defining study represents an initial step in the development of enhanced interventions for improved psychosocial support in this vulnerable population.

Conditions

Solid Tumor; Hematological Malignancies; Brain Tumor

Keywords

Adolescent; Decision-making; Social network

Outcome Measures

Primary Outcomes (3)

• Factors contributing to decision-making

  Describe the ways relationships and social interactions may factor into adolescent study participants' approach to decisions.

  Once, at enrollment

• Behaviors that make a positive impact on decision-making

  By reports from adolescents with cancer, identify behaviors from members of the study participants' social network that would be helpful to adolescents in fulfilling their preferred role in medical decision-making and achieving the desired level of participation in medical decision-making.

  Once, at enrollment

• Preferred decision-making role

  Identify adolescent participants' preferred role in medical decision making.

  Once, at enrollment

Study Arms (1)

Study Participants

All enrolled participants will take part in a face-to-face interview.

Other: Interview

Interventions

Interview OTHER

This study involves teen participants taking part in one private interview with the study team. Interviews last less than one hour and are scheduled at the participant's convenience. Interviews will be audio/digital recorded. Participants may answer any or all of the questions.

Study Participants

Eligibility Criteria

• Age: 12 Years - 19 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Participants will be teens who are patients at St. Jude Children's Research Hospital and meet the criteria for study enrollment.

You may qualify if:

• Participants must be between 12 and 19 years of age at the time of enrollment.
• Participants must have primary care team approval to participate.
• Participants must be English-speaking.
• Participants must carry an oncologic diagnosis.
• Participants must be within four months of initial oncologic diagnosis or within four months of relapse/recurrent disease.

You may not qualify if:

• Patients who, in the opinion of their physician, are not capable mentally or verbally of participating in the interview, will be excluded from the study.

Sponsors & Collaborators

• St. Jude Children's Research Hospital: lead

Study Sites (2)

Children's National Health System

Washington D.C., District of Columbia, 20010, United States

Location

St. Jude Children's Research Hospital

Memphis, Tennessee, 38105, United States

Location

Related Links

• St. Jude Children's Research Hospital
• Clinical Trials Open at St. Jude

MeSH Terms

Conditions

Hematologic Neoplasms; Brain Neoplasms

Interventions

Interviews as Topic

Condition Hierarchy (Ancestors)

Neoplasms by Site; Neoplasms; Hematologic Diseases; Hemic and Lymphatic Diseases; Central Nervous System Neoplasms; Nervous System Neoplasms; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Meaghann Weaver, MD

  St. Jude Children's Research Hospital

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 22, 2014
• First Posted: July 24, 2014
• Study Start: July 1, 2014
• Primary Completion: May 1, 2015
• Study Completion: May 1, 2015
• Last Updated: June 4, 2015

Record last verified: 2015-06

Locations

US (2)