Year: 2018
Type: letter
Abstract: To the Editor: We read with great interest the recent publication of Schold et al, and Greenwald’s accompanying editorial comments.1Schold JD Andreoni KA Chandraker AK et al.Expanding clarity or confusion? Volatility of the 5-tier ratings assessing quality of transplant centers in the United States.Am J Transplant. 2018; 18: 1494-1501Abstract Full Text Full Text PDF PubMed Scopus (16) Google Scholar,2Greenwald M Shifting the conversation on outcomes reporting.Am J Transplant. 2018; 18: 1303-1304Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar Schold and colleagues found that the Scientific Registry for Transplant Recipients (SRTR) 5-tier ratings based on graft survival has limited utility for transplant center performance evaluation. Greenwald argues that while graft and patient survival were important historically, today they may be the wrong metric altogether, as patient and graft survival are approaching 100% for most solid organ transplants. This is especially the case for kidney transplantation. This essential point cannot be overstated. While 1-year graft and patient survival are critical clinical metrics, most transplant programs perform very well in this regard, with very little variation between centers. In the January 2018 SRTR report, the mean 1-year graft survival among over 200 centers was 94.1% (standard deviation [SD]: 7.6%) for deceased donor kidney transplant and 97.9% (SD: 3.5%) for living donor kidney transplant. Efforts directed at differentiating centers based on these metrics are tantamount to gilding the lily by splitting hairs. Instead, our collective efforts and energy should be galvanized towards meaningful use of more relevant data. Recent research with kidney recipients suggests that although patients care about graft survival and mortality, they are also very concerned about symptom management and quality of life improvements that transplant provides over dialysis, including the ability to work productively.3Tong A Gill J Budde K et al.Toward establishing core outcome domains for trials in kidney transplantation: report of the standardized outcomes in nephrology-kidney transplantation consensus workshops.Transplantation. 2017; 101: 1887-1896Crossref PubMed Scopus (64) Google Scholar It has also been found that patients perceive death as an outcome independent of others, such as quality of life, as a low priority in this setting. Hence, as suggested by Greenwald, we strongly believe that the time is right to shift focus from pure survival to newer, patient-centered metrics. These metrics are often captured through patient-reported outcome measures (PROMs). Validated PROMs can cover many important life domains such as physical, mental, social, and general health.4Cella D Riley W Stone A et al.The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008.J Clin Epidemiol. 2010; 63: 1179-1194Abstract Full Text Full Text PDF PubMed Scopus (2640) Google Scholar Within these broad categories are various symptoms and functional abilities, such as pain, fatigue, emotional distress, and social participation in a meaningful life. The use of PRO-based healthcare performance measures (PRO-PMs) is increasing across medicine. For example, the Centers for Medicaid and Medicare Services requires measures of patient experience with care and health-related quality of life (HRQOL) to be administered with every dialysis patient on a biannual or annual basis. In addition, the importance of PRO-PMs for transplant patients was recently highlighted by a European expert consensus statement, where representatives from renal registries agreed that PROMs should be part of routine data collection for their registries.5Breckenridge K Bekker HL Gibbons E et al.How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting.Nephrol Dial Transplant. 2015; 30: 1605-1614Crossref PubMed Scopus (93) Google Scholar Identifying the most relevant PROMs and PRO-PMs to evaluate transplant center performance remains an important and timely topic for new research. To ensure that new quality measures are appropriate and fair reflections of transplant center quality, clinical researchers should carefully examine ways that PRO-PMs can be constructed to reflect symptom management, patient-reported health (eg, HRQOL), and experience with care. Such metrics have been the basis for successful PRO-PMs in other fields of medicine and likely would be beneficial for monitoring transplant center performance monitoring as well. While ensuring certain transplant center quality metrics (eg, minimal graft survival) are met, continuing a race towards 100% does not benefit the patients we are committed to serve. Quality of life is as important as quantity of life. If we want to provide patient-centered care, such metrics should become part of clinical assessment and interpretable results should be readily available to patients. The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Transplantation.
DOI: 10.1111/ajt.14968
Institution: Northwestern University
Language: English
Subfield: Transplantation
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $4,300
OpenAlex ID: W2808695478