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Abstract
Liver transplantation aims to halt the progression of the disease in patients with familial amyloidotic polyneuropathy (FAP) caused by hereditary transthyretin-related (ATTR) amyloidosis. Insight in health-related quality of life of these transplanted FAP-patients can be of help to optimize health care delivery. The aim of this cross-sectional study was to assess the health-related quality of life of patients with FAP long-term after transplantation.
Nine patients with a post-transplant follow-up of 4 years or more were included in the study. During the annual checks, health-related quality of life was measured with the Short Form-36 (SF-36). Data were compared with non-FAP transplanted patients with the same duration of follow-up and with the normal Dutch population. Pre-transplant, all patients had signs of mild to moderate peripheral polyneuropathy.
The results showed that in patients with FAP health-related quality of life was stable in the first 4 years after transplantation. The domain of physical well-being at 4 years after transplantation was significantly lower compared to non-FAP transplanted patients and control Dutch population. The domain of emotional well-being was comparable with non-FAP controls. However, on most health areas patients with FAP scored lower than the non-FAP transplanted patients and the Dutch controls. After four years, the three patients with FAP with longest follow-up (9–12 years) deteriorated in all health domains, except in self-perceived mental health.
This study, including only a small number of patients with FAP, shows a relatively low health-related quality of life after liver transplantation, which may deteriorate further with longer follow-up.
| Abbreviations | ||
| ATTR | = | transthyretin |
| BP | = | bodily pain |
| Cys | = | cysteïne |
| FAP | = | familial amyloidotic polyneuropathy |
| GH | = | general health |
| Glu | = | glutamic acid |
| Gly | = | glycine |
| Met | = | methionine |
| MH | = | mental health |
| PF | = | physical functioning |
| RE | = | role limitations due to emotional problems |
| RP | = | role limitations due to physical problems |
| SF-36 | = | Medical Outcome Study 36-item Short Form Survey |
| SF | = | social functioning |
| Val | = | valine |
| VT | = | vitality |
| Abbreviations | ||
| ATTR | = | transthyretin |
| BP | = | bodily pain |
| Cys | = | cysteïne |
| FAP | = | familial amyloidotic polyneuropathy |
| GH | = | general health |
| Glu | = | glutamic acid |
| Gly | = | glycine |
| Met | = | methionine |
| MH | = | mental health |
| PF | = | physical functioning |
| RE | = | role limitations due to emotional problems |
| RP | = | role limitations due to physical problems |
| SF-36 | = | Medical Outcome Study 36-item Short Form Survey |
| SF | = | social functioning |
| Val | = | valine |
| VT | = | vitality |