This readme.txt file was generated on <2024-08-15> by Recommended citation for the data: August 15, 2024 ------------------- GENERAL INFORMATION ------------------- 1. Title of Dataset Creating a patient-centered report card for solid organ transplant candidates 2. Author Information Principal Investigator Contact Information Name: Israni, Ajay K Institution: Hennepin Healthcare Research Institute Address: 701 Park Ave.; Shapiro 5; Minneapolis, MN 55415 Email: isran001@umn.edu ORCID: 0000-0002-7607-0430 Associate or Co-investigator Contact Information Name: Bruin, Marilyn Institution: University of Minnesota Address: 12 McNeal Hall; 1985 Buford Ave.; St. Paul, MN 55108 Email: mbruin@umn.edu ORCID: Associate or Co-investigator Contact Information Name: Chu, Sauman Institution: University of Minnesota Address: 12 McNeal Hall; 1985 Buford Ave.; St. Paul, MN 55108 Email:schu@umn.edu ORCID: Associate or Co-investigator Contact Information Name: McKinney, Warren Institution: Hennepin Healthcare Research Institute Address: 701 Park Ave.; Shapiro 5; Minneapolis, MN 55415 Email: wmckinney@hhrinstitute.org ORCID: 0000-0001-7699-9859 Associate or Co-investigator Contact Information Name: Schaffhausen, Cory Institution: Hennepin Healthcare Research Institute Address: 701 Park Ave.; Shapiro 5; Minneapolis, MN 55415 Email: schaf390@umn.edu ORCID: 0000-0003-1705-1560 Associate or Co-investigator Contact Information Name: Schladt, David Institution: Hennepin Healthcare Research Institute Address: 701 Park Ave.; Shapiro 5; Minneapolis, MN 55415 Email: David.schladt@cdrg.org ORCID: 3. Date published or finalized for release: 2024-08-15 4. Date of data collection (single date, range, approximate date) 2016-07-01 - 2018-09-30 5. Geographic location of data collection (where was data collected?): Minneapolis, MN Chicago, IL 6. Information about funding sources that supported the collection of the data: Agency for Healthcare Research and Quality (AHRQ)- R01 HS024527 7. Overview of the data (abstract): We have include a copy of the discussion guide and demographics/clinical questionnaire for our qualitative study. The study included solid organ transplant patients (e.g. kidney, liver, lung, heart) and family members. The demographic/clinical questionnaires provided here are for kidney patients and their families. Participants from the other organ groups completed similar questionnaires adapted for the organ group. -------------------------- SHARING/ACCESS INFORMATION -------------------------- 1. Licenses/restrictions placed on the data: 2. Links to publications that cite or use the data: https://doi.org/10.1097/tp.0000000000004051 https://doi.org/10.1371/journal.pone.0251102 https://doi.org/10.1097/txd.0000000000001140 https://doi.org/10.1111/ctr.14183 https://doi.org/10.1097/txd.0000000000001036 https://doi.org/10.1002/lt.25715 https://doi.org/10.1097/tp.0000000000002809 https://doi.org/10.1111/ctr.13523 3. Was data derived from another source? NO If yes, list source(s): Scientific Registry for Transplant Recipients 4. Terms of Use: Data Repository for the U of Minnesota (DRUM) By using these files, users agree to the Terms of Use. https://conservancy.umn.edu/pages/drum/policies/#terms-of-use --------------------- DATA & FILE OVERVIEW --------------------- 1. File List A. Filename: AHRQ Discussion Guide Short description: The file includes an example of the discussion guide used for interviews and focus groups. B. Filename: AHRQ Kidney Candidate-Recipient Questionnaire Short description: The file includes the demographic/clinical questionnaire used for kidney patients. C. Filename: AHRQ Kidney Family Questionnaire Short description: The file includes the demographic/clinical questionnaire used for the family members of kidney patients. 2. Relationship between files: There is no relationship between each file. -------------------------- METHODOLOGICAL INFORMATION -------------------------- 1. Description of methods used for collection/generation of data: We used qualitative methods (e.g., interviews and focus groups) to collect data from study participants. Team members relied on an Institutional Review Board approved interview/focus group guide to structure the discussions. Study sessions were conducted in person in a clinic office setting or in a hotel conference room--national focus groups only. Study sessions were audio recorded and transcribed verbatim. 2. Methods for processing the data: Recorded audio files were professionally transcribed before analysis. A team member reviewed all transcript files to ensure that protected information was not included. 3. Instrument- or software-specific information needed to interpret the data: Microsoft Word or comparable word processor 4. Standards and calibration information, if appropriate: N/A 5. Environmental/experimental conditions: N/A 6. Describe any quality-assurance procedures performed on the data: Audio files were transcribed professionally and verified by a study team member. 7. People involved with sample collection, processing, analysis and/or submission: Data Collection - Bruin, Marilyn Chu, Sauman Israni, Ajay Schaffhausen, Cory Data Processing - Fu, Helen McKinney, Warren SameDayTranscriptionist - transcription services Schaffhausen, Cory Data Analysis - Bruin, Marilyn Fu, Helen McKinney, Warren Schaffhausen, Cory Schladt, David Data Submission - McKinney, Warren ----------------------------------------- DATA-SPECIFIC INFORMATION FOR: [FILENAME] ----------------------------------------- 1. Number of variables: N/A 2. Number of cases/rows: N/A 3. Missing data codes: N/A 4. Variable List: N/A