Just Reach Out and Touch Someone: HRQOL
The issue of HRQOL is of particular importance in lung transplant candidates for a number of reasons. First, when subjecting patients to a procedure with a potential 1-year mortality rate of approximately 24%, it is incumbent on the clinician to present this option in the context of the impact on posttransplant survival as well as on HRQOL. Indeed, there already has been a controversial report showing that transplantation did not improve longevity in the COPD population. However, if these data were analyzed with respect to QALY, there is little doubt that the conclusions would have favored transplantation.
An essential aspect of posttransplant care is the optimization of the patient’s HRQOL. Aside from routine medical care, this is usually further facilitated through pulmonary rehabilitation, continued education, and participation in support groups. However, the listed patients often are not fully ensconced within the transplant center’s system and do not, therefore, have access to the same level of support services prior to undergoing transplantation. Whereas posttransplant patients are seen very frequently at the respective transplant centers, pretransplant patients tend to be seen less frequently, with the responsibility for their medical care falling on their primary pulmonologists. Although many programs offer pretransplant support groups, listed patients often are unable to attend them owing to logistical issues.
Most programs require that their listed patients be actively engaged in a pulmonary rehabilitation program. One cannot understate the important role that pulmonary rehabilitation plays in optimizing the patient’s pretransplant status, including providing some measure of psychosocial support. However, not all pulmonary rehabilitation programs are created equal, and, indeed, it is not uncommon for patients in smaller metropolitan areas to undergo rehabilitation at a cardiac rehabilitation facility. Furthermore, patients in remote pulmonary rehabilitation programs may be the only patients listed for transplant and may feel isolated, thereby limiting their subjective sense of support. Although some transplant centers insist on their patients relocating closer as they move up the list, this may only be at a point when the patient already has been on list for many months. Therefore, the nature of the system of care before transplantation and the relative rarity of the procedure contribute to the lack of support that is available to listed patients for most of their time on the list. The burden of care for transplant centers is focused on the transplant recipients. With the close scrutiny on transplant outcomes, it is understandable that most resources are so directed.