Living Kidney Donors' Information Needs and Preferences. 2016

Heather M Traino, and Camilla W Nonterah, and Gaurav Gupta, and Jodi Mincemoyer
Department of Social and Behavioral Sciences, Temple University, Philadelphia, PA, USA trainohm@temple.edu.

BACKGROUND Past research suggests the information exchanged from transplant centers to potential living kidney donors is, in many cases, suboptimal. The purpose of this study was to assess donors' perceptions of the information provided while considering living donation. METHODS Semistructured telephone interviews conducted with 81 past living donors seen at 1 mid-Atlantic transplant center assessed the extent to which living kidney donors deemed Centers for Medicare and Medicaid Services (CMS)-mandated information useful to making a decision about donation and to which more information was or would have been desired before donating. Understanding of and satisfaction with the information was also assessed. RESULTS Participants were primarily white (67.9%), females (67.9%), with an average age of 57.8 years. Perceived usefulness ranged from a mean of 3.1 for the confidentiality of the transplant center's communication to 4.1 for postoperative care and short-term medical risks of donation. Donors of minority descent as well as those with more education and less income found the information provided most useful. Few donors desired additional information about the right to opt out of (8.6%) or decline (13.6%) donation; however, most wanted more information regarding the risk of being refused health, disability and/or life insurance after donating (77.8%), and insurance coverage for future health problems (66.7%). CONCLUSIONS This study revealed limited usefulness of certain CMS-mandated topics and a desire for additional information about donation. Efforts to standardize the informed consent process should incorporate donors' perspectives as to the specific topics, quantity of information, and the mode of communication found most useful when considering living donation.

UI MeSH Term Description Entries
D007258 Informed Consent Voluntary authorization, by a patient or research subject, with full comprehension of the risks involved, for diagnostic or investigative procedures, and for medical and surgical treatment. Consent, Informed
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D003142 Communication The exchange or transmission of ideas, attitudes, or beliefs between individuals or groups. Miscommunication,Misinformation,Social Communication,Communication Programs,Communications Personnel,Personal Communication,Communication Program,Communication, Personal,Communication, Social,Communications, Social,Miscommunications,Misinformations,Personnel, Communications,Program, Communication,Programs, Communication,Social Communications
D005260 Female Females
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults
D016030 Kidney Transplantation The transference of a kidney from one human or animal to another. Grafting, Kidney,Renal Transplantation,Transplantation, Kidney,Transplantation, Renal,Kidney Grafting,Kidney Transplantations,Renal Transplantations,Transplantations, Kidney,Transplantations, Renal
D057240 Patient Preference Individual's expression of desirability or value of one course of action, outcome, or selection in contrast to others. Patient Preferences,Preference, Patient,Preferences, Patient
D019458 Insurance Coverage Generally refers to the amount of protection available and the kind of loss which would be paid for under an insurance contract with an insurer. (Slee & Slee, Health Care Terms, 2d ed) Insurance Status,Coverage, Insurance,Status, Insurance

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