A Mixed-Methods Approach to Understanding Variation in Social Support Requirements and Implications for Access to Transplantation in the United States

Abstract

Social support is a key component of transplantation evaluation in the United States. Social support definitions and evaluation procedures require examination to achieve clear, consistent implementation. We surveyed psychosocial clinicians from the Society for Transplant Social Workers and American Society of Transplant Surgeons about their definitions and evaluation procedures for using social support to determine transplant eligibility. Bivariate statistical analysis was used for quantitative data and content analysis for qualitative data. Among 276 psychosocial clinicians (50.2% response rate), 92% had ruled out patients from transplantation due to inadequate support. Social support definitions varied significantly: 10% of respondents indicated their center lacked a definition. Key domains of social support included informational, emotional, instrumental, motivational, paid support, and the patient’s importance to others. Almost half of clinicians (47%) rarely or never requested second opinions when excluding patients due to social support. Confidence and perceived clarity and consistency in center guidelines were significantly associated with informing patients when support contributed to negative wait-listing decisions ( P = .001). Clinicians who excluded fewer patients because of social support offered significantly more supportive health care ( P = .02). Clearer definitions and more supportive care may reduce the number of patients excluded from transplant candidacy due to inadequate social support.

Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination

“…13,14,18 better supported and may have more continuous access to services than nondisabled recipients. 18,42 Given the limited predictive value of social support for posttransplant adherence and its potential for increasing disparities, 43…”

“…Indeed, some individuals with ID might be better supported and may have more continuous access to services than nondisabled recipients . Given the limited predictive value of social support for posttransplant adherence and its potential for increasing disparities, at a minimum, transplant teams should not exclude a priori patients with ID on adherence grounds …”

“…Patients with ID often have access to supportive care and robust social support systems . As part of transplant evaluation, centers should ensure reliable transportation to healthcare facilities, effective phone communication, adherence to medical appointments and treatment regimens prior to transplantation, designated substitute caregivers where appropriate, and the ability to take medications orally or be administered via gastrostomy tube.…”

“…at a minimum, transplant teams should not exclude a priori patients with ID on adherence grounds 18,43,44. Some argue that individuals with ID, especially along the spectrum of more severe disability, may not have a quality of life (QOL) comparable to persons without disability, and as such, would not derive as much benefit from transplantation.…”

Pediatric Deep Brain Stimulation for Dystonia: Current State and Ethical Considerations

“…In other clinical contexts, such as organ transplantation, definitions of social support have been found to lack transparency and to vary across institutions. 93 In those contexts, evidence has failed to demonstrate that social support leads to different clinical outcomes. Despite this lack of evidence, this criterion is still used when determining organ recipients.…”