Transplant medicine’s new frontier: measuring what survival statistics cannot

Solid organ transplantation has become one of modern medicine’s most remarkable success stories. Advances in peri-operative and post-operative care have pushed five-year patient survival rates above 90 percent for the majority of transplanted organs, according to recent OPTN/SRTR annual data reports covering kidney, liver, heart, and lung transplantation. Yet a growing body of researchers argues that these impressive statistics conceal a critical blind spot: survival alone no longer defines what it means for a transplant to succeed.

In a perspective article published in Transplant International, Chiara Becchetti of the University of Bern and Sofia C. Zambrano of the University of Bern’s Institute of Social and Preventive Medicine contend that the field has reached an inflection point. With graft and patient survival now so robust, they argue, attention must shift toward patient-reported outcomes, quality of life, psychological wellbeing, treatment burden, social reintegration, and the broader lived experience of transplant recipients. These dimensions, they emphasize, are often subjective and context-dependent, making them difficult to capture through quantitative methods alone.

The authors point to what they describe as a false narrative in kidney transplantation, where graft survival is frequently treated as the sole definition of success while critical dimensions of adaptation to life after transplant are overlooked. Patient-reported outcome measures, or PROMs, have emerged as valuable tools for quantifying quality of life and symptom burden beyond survival, with kidney transplantation currently at the forefront of such initiatives. However, the authors stress that these instruments originate from inherently subjective and experiential domains, and that rigorous qualitative research must precede their development to identify what patients themselves consider important.

Qualitative research, as the authors define it, is an interpretive approach to data collection and analysis concerned with the meanings people attach to their experiences of the social world. Rather than standardizing questions or responses, it treats the participant as the expert of their own experience, uncovering the meanings and constructions that shape health and illness. In this framework, subjectivity is not a bias to be eliminated but the essence of the data being studied.

The potential applications in transplant medicine are broad and still underexplored. Qualitative methods can illuminate patients’ lived experiences before and after transplantation, their expectations and fears, adherence behaviors, perceptions of immunosuppressive therapy, and the psychosocial impact of long-term follow-up. While quantitative studies can measure adherence rates to immunosuppressive medications, qualitative approaches can explore the underlying reasons, beliefs, and barriers that drive patient behavior, yielding insights far more relevant for clinicians aiming to improve adherence. Qualitative methods can also inform shared decision-making by revealing how patients and clinicians perceive risks, benefits, and trade-offs in complex decisions around transplant eligibility, listing, and post-transplant management.

Beyond clinical interactions, the authors highlight the profound existential and emotional dimensions of transplantation that qualitative research is uniquely positioned to capture. For recipients, this may include the complex reconstruction of identity or the navigation of emotions such as survivor’s guilt. The impact of transplantation extends beyond the patient to donor families and their experiences of grief associated with deceased donation, and even healthcare providers are not immune, as evidenced by studies documenting the emotional toll faced by transplantation coordinators.

Despite this potential, qualitative research remains significantly underutilized in transplant medicine. A PubMed search of leading solid organ transplantation journals combined with qualitative research keywords over the past five years revealed that less than 2 percent of published articles fall within this domain. The authors attribute this underrepresentation not solely to deliberate editorial choices but also to the limited availability of editors and reviewers with expertise in qualitative methodologies, leading to inconsistent evaluation standards and lower acceptance rates that in turn discourage qualitative researchers from submitting to these journals.

Several misconceptions contribute to this gap. A common criticism is that qualitative samples are too small, yet most qualitative studies do not seek statistical representativeness or determine sample size through statistical power. Instead, sampling is most often purposive and oriented toward generating sufficiently rich and relevant data to address the research question. Concepts such as saturation are appropriate within some traditions, such as grounded theory, but should not be imposed as universal criteria. Other approaches draw on information power, which considers whether participants and data provide sufficient relevant information rather than judging sample adequacy by participant numbers alone.

Empirical evidence supports this perception problem. In a qualitative study involving medical trainees and physicians, participants consistently rated quantitative projects as more scientific than qualitative ones and often perceived qualitative data as more biased and less objective. Notably, acceptance of qualitative research was strongly associated with prior exposure to its methods, while level of training had no impact. A recent study examining how medical faculty without qualitative research experience perceived its challenges found that despite recognizing its value, academics struggled to engage due to limited training, experience, and institutional support, with time constraints and lack of recognition further hindering adoption.

The authors also document how these systemic issues manifest during peer review. Clarke and colleagues recently highlighted qualitative researchers’ experiences of methodologically incongruent feedback, reporting that reviewers and editors often lack appropriate methodological expertise. When attempts to clarify these issues fail, researchers may feel compelled to compromise methodological rigor to achieve publication, an issue particularly pronounced among early-career academics within a publish-or-perish environment. Reporting guidelines such as the Consolidated Criteria for Reporting Qualitative Research, or COREQ, checklist can support greater transparency, though the authors caution that these tools should be selected and interpreted in relation to the methodology employed rather than treated as universal quality checklists.

Rather than viewing qualitative and quantitative research as competing paradigms, the authors advocate for integration when appropriate to the research question. Mixed-methods approaches, which combine both types of data, are particularly promising in transplant medicine. Quantitative data can provide generalizable evidence on outcomes, while qualitative data can offer depth and contextual understanding, helping to interpret and apply findings in real-world settings. In clinical trial research, the authors note that qualitative components have traditionally been treated as subordinate add-ons or nested sub-studies, but researchers are increasingly encouraged to plan comprehensive studies in which the qualitative component is an equal partner that can optimize recruitment, refine informed consent, and explain unexpected outcomes.

To fully realize this potential, the authors call for several concrete steps. Training programs should incorporate qualitative methods into clinical research curricula, equipping clinicians with the skills needed to design and interpret such studies. Interdisciplinary collaboration with social scientists and qualitative methodologists should be encouraged. Journals should strive to include editors and reviewers with expertise in qualitative research and develop clearer guidelines for its evaluation. As transplantation outcomes continue to improve, the authors conclude, redefining success beyond survival to include patient experience and quality of life highlights the critical role of qualitative research in advancing truly patient-centered care.

Subject of Research: Transplant Medicine

Article Title: From graft survival to lived experience: a new research agenda in transplant medicine

Article References: Becchetti, C., & Zambrano, S. C. (2026). From graft survival to lived experience: a new research agenda in transplant medicine. Transplant International, 39, Article 17264. https://doi.org/10.3389/ti.2026.17264

Image Credits: AI Generated

DOI: 10.3389/ti.2026.17264

Keywords: graft, survival, lived, experience, research, agenda, transplant, medicine, scientific research