TABLE 1.
Summary of empirical evidence relating key transplant outcome measures to each group with potentially impaired decision making capacity.
| Group with potentially impaired DECISION-MAKING capacity | Key transplant outcome measures | |||
|---|---|---|---|---|
| Adherence with medical therapy | Graft outcome | Patient outcome | Quality of life | |
| Intellectual disability | Cohort studies suggesting adherence is comparable. OCEBM a level 3 (1, 17) | Multiple cohort studies suggesting graft outcomes are comparable. OCEBM level 3 (1, 13–19, 33) | Multiple cohort studies suggesting non-graft outcomes are comparable. OCEBM level 3 (1, 13–19, 33) | Evidence is that in general quality of life is improved by transplantation (25) |
| OCEBM level 1 | ||||
| Small number of cohort studies showing QOL benefit in this group. OCEBM level 3 (26, 33) | ||||
| Severe mental health conditions | Evidence of increased non-adherence in those with depression (7) OCEBM level 3 but not in other conditions in particularly in those with psychosis/mania (8, 9) OCEBM Level 3 | Evidence of poorer outcomes in those with depression (24) OCEBM level 1. Otherwise conflicting evidence from cohort studies of other psychological conditions OCEBM Level 3 (2, 8, 9, 22) | Evidence of poorer outcomes in those with depression (24) OCEBM level 1 | Evidence is that in general quality of life is improved by transplantation (25) |
| Otherwise conflicting evidence from cohort studies of other psychological conditions OCEBM Level 3 (2, 8, 9, 22) | OCEBM level 1 | |||
| Cognitive impairment | Evidence from cohort studies of reduced adherence in older age groups of transplant recipients | Cohort studies indicate worse outcomes (23) | Cohort studies indicate worse outcomes (23) | Cohort study evidence that QoL benefit is consistent in over 65s (those most at risk of cognitive impairment on dialysis)(28) |
| OCEBM level 3 (11, 12) | OCEBM level 3 | OCEBM level 3 | OCEBM level 3 | |
| Permanent disorders of consciousness | No concern as adherence would be assured by caregiver | No evidence available | No evidence available | Theoretical reason to believe QoL outcomes would be significantly different from the general population of transplant recipients |
a
Oxford Centre for Evidence Based Medicine 2011 levels of evidence are included to indicate the degree of certainty with which the authors make these assertions.
This table has drawn on evidence relating to intellectual disability from the paediatric literature. However in this paper we do not consider children as a discrete category, as they are treated differently where they are considered too young to have the legal capacity to make the relevant decisions, whether or not they have any intellectual disability or mental disorder.