This readme.txt file was generated on 2024-08-15 by W McKinney (edited by data curator 20240823) Recommended citation for the data: Israni, Ajay K.; Bruin, Marilyn; Chu, Sauman; McKinney, Warren T.; Schaffhausen, Cory; Schladt, David. (2024). Creating a patient-centered report card for solid organ transplant candidates. Retrieved from the Data Repository for the University of Minnesota (DRUM), https://doi.org/10.13020/BAGF-H278. ------------------- 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 2016-07-01 - 2018-09-30 5. Geographic location of data collection: 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. This record contains supplemental files only. The original data is sensitive in nature and will not be shared under any circumstances. It is preserved at the Principal Investigator's institution. -------------------------- SHARING/ACCESS INFORMATION -------------------------- 1. Licenses/restrictions placed on the data: Attribution-NonCommercial 4.0 International http://creativecommons.org/licenses/by-nc/4.0/ 2. Links to publications that cite or use the data: Israni, A. K., Schladt, D., Bruin, M. J., Chu, S., Snyder, J. J., Hertz, M., ... & Schaffhausen, C. R. (2022). Deconstructing silos of knowledge around lung transplantation to support patients: a patient-specific search of scientific registry of transplant recipients data. Transplantation, 106(8), 1517-1519. https://doi.org/10.1097/tp.0000000000004051 Chu, S., Bruin, M. J., McKinney, W. T., Israni, A. K., & Schaffhausen, C. R. (2021). Design of a patient-centered decision support tool when selecting an organ transplant center. PloS one, 16(5), e0251102. https://doi.org/10.1371/journal.pone.0251102 Schaffhausen, C. R., Bruin, M. J., Chu, S., McKinney, W. T., Lake, J. R., Chinnakotla, S., & Israni, A. K. (2021). Designing a liver transplant patient and family decision support tool for organ offer decisions. Transplantation direct, 7(5), e695. https://doi.org/10.1097/txd.0000000000001140 McKinney, W. T., Schaffhausen, C. R., Schladt, D., Bruin, M. J., Chu, S., Snyder, J. J., ... & Israni, A. K. (2021). Designing a patient‐specific search of transplant program performance and outcomes: Feedback from heart transplant candidates and recipients. Clinical transplantation, 35(2), e14183. https://doi.org/10.1111/ctr.14183 McKinney, W. T., Schaffhausen, C. R., Bruin, M. J., Chu, S., Schladt, D., Matas, A., ... & Israni, A. K. (2020). Development of a patient-specific search of transplant program outcomes and characteristics: feedback from kidney transplant patients. Transplantation direct, 6(8), e585. https://doi.org/10.1097/txd.0000000000001036 Schaffhausen, C. R., Bruin, M. J., Chu, S., Fu, H., McKinney, W. T., Schladt, D., ... & Israni, A. K. (2020). Tool to aid patients in selecting a liver transplant center. Liver Transplantation, 26(3), 337-348. https://doi.org/10.1002/lt.25715 Schaffhausen, C. R., Bruin, M. J., Chu, S., Wey, A., McKinney, W. T., Snyder, J. J., ... & Israni, A. K. (2020). Comparing pretransplant and posttransplant outcomes when choosing a transplant center: focus groups and a randomized survey. Transplantation, 104(1), 201-210. https://doi.org/10.1097/tp.0000000000002809 Schaffhausen, C. R., Bruin, M. J., McKinney, W. T., Snyder, J. J., Matas, A. J., Kasiske, B. L., & Israni, A. K. (2019). How patients choose kidney transplant centers: a qualitative study of patient experiences. Clinical transplantation, 33(5), e13523. https://doi.org/10.1111/ctr.13523 3. Was data derived from another source? NO 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