New data presented at ESTS found 13% of patients felt their lung cancer surgery went worse than expected – yet not one of the over 200 surgeons surveyed agreed, revealing an urgent need to align outcomes with experience.
What happens when lung cancer surgery is clinically successful, but the patient walks away feeling it went wrong?
That question sits at the heart of new research supported by Johnson & Johnson MedTech, in partnership with Lung Cancer Europe (LuCE), to be presented at the European Society of Thoracic Surgeons (ESTS) Conference 2025. The findings uncover a persistent disconnect between how surgical teams and patients perceive lung cancer surgery success - a gap that could play a critical role in shaping empowered recovery, trust, and long-term engagement with care.
In a pan-European survey of 214 surgeons and 230 thoracic surgery patients recruited through Lung Cancer Europe (LUCE), the data show that 13% of patients said their surgery went worse than expected. In contrast, none of the surgeons surveyed believed the procedures they had completed went worse than anticipated, exposing a striking misalignment between clinical success and personal patient perceptions.
But the perception gap doesn’t end there as broader findings from the research reveal.
Risk discussions fall short and consent suffers
While mortality is a risk for lung surgery, in advance of surgery only 61% of surgeons reported discussing this fully with their patients. Fewer still said they discussed major post-operative complications in advance such as pulmonary embolism or respiratory failure. From the patient perspective, 22% responded that they did not agree that they had ‘understood’ surgery information and complication, with 21% stating they had not ‘received’ all the expected surgical procedure information and complications.
“The results of this research reinforce the need to move from a culture of delivery to one of shared ownership,” said Prof. Cecilia Pompili, Professor of Psychosocial Oncology, Hull University Teaching Hospitals. “It is essential that patient expectations are managed through their complete understanding of what surgery really involves – physically, emotionally and practically. Only through achieving this can we support patient empowerment as informed partners in their care decisions.”
Pre- and post-operative support is inconsistent
The survey highlights gaps throughout the care pathway:
- Fewer than one in three patients recall receiving guidance from a pulmonary nurse despite 64% of health care practitioners stating they have specialized pulmonary nurses
- Only 23% reported seeing a GP after discharge, a role which can strengthen the post-operative phase by facilitating better continuity of care to further personalize the patient recovery experience.
- 38% said they didn’t fully understand their follow-up instructions, which are designed to reduce the likelihood of complications that even the most clinically successful surgery can’t necessarily prevent
“These findings point to a clear opportunity to raise the standard of surgical care by embedding consistent communication, patient-centered support, and shared decision-making as core components of quality, alongside clinical outcomes,” said Gianluca Casali, Senior Global Medical Director for Johnson & Johnson MedTech. “These touchpoints, often dismissed as non-clinical, play a critical role in how patients make sense of their surgical journey and manage recovery.”
Why it matters
Beyond just ethical considerations, the informed and empowered patient has a critical role to play in supporting their own recovery post-operatively to reduce the likelihood of costly complications that could have been avoided. Therefore, it should not be underestimated how a patient’s willingness to embrace this role can be impacted where a breakdown in communication and/or trust with their care team has unfortunately taken place.
Impacted factors might include reporting pain which, without effective management, has been linked to post traumatic stress disorder (PTSD). Reduced patient confidence may also impact early mobilization and effective completion of breathing exercises post-operatively, which – if not completed effectively – could increase the risk of postoperative complications or exacerbation of other comorbidities.
“It can be a whirlwind for patients, with many fortunate to have their lung cancer discovered early without experiencing many symptoms at all prior to this. And yet, they will be facing the challenging reality of recovery from surgery perhaps just a few short weeks later”, said Debra Montague, President of Lung Cancer Europe (LuCe) and Chair of ALK Positive UK. “It can be extremely disorientating for patients, who are often trying to grab hold of what they can control when their life has been turned upside down. Enabling their shared decision making through structured support and education, helps patients take a more active role in their care.”
Success must reflect more than margins and metrics
The research challenges traditional definitions of surgical “success,” which focus largely on clinical outcomes in the operating room. Yet for patients, from diagnosis through to recovery, success also means being informed, supported, and involved as part of shared decision making. Without alignment between these perspectives, reduced satisfaction and even disengagement can impact recovery and long-term outcomes.
Psychosocial specialists warn that unacknowledged anxiety, unmet expectations, or lack of clear follow-up can erode confidence in the system.
Tools exist — but they’re not yet standard
Many of the solutions to these issues already exist. Enhanced Recovery After Surgery (ERAS) protocols are proven to reduce complications and opioid use, and nurse navigators are shown to improve patient understanding and satisfaction. Yet adoption remains patchy:
- (80%) of surgeons stated they have been successful in adopting ERAS into their department, yet less than one third of patients recalled support from a pulmonary nurse.
- Just a third of surgeons said they use remote follow-up tools despite most patients stating, if given the option for remote follow up via app on a phone, they would be comfortable to very comfortable
What’s Next
Following the full journal publication of this research, Johnson & Johnson MedTech plans to channel the findings into publication of Delphi consensus recommendations developed through expert consultation, forming practical guidelines for lung cancer care teams’ implementation. The recommendations will be designed to shape work across Europe, advocating for:
- More structured, shared decision-making frameworks
- Standardized communication of risks and expectations
- Greater integration of digital follow-up and nurse navigation
- Widespread use of patient-reported outcomes in surgical quality assessments
As surgical care continues to evolve, this research highlights a clear truth: technical excellence must be matched by human-centered care. The future of thoracic surgery must be shaped not just by what happens in the operating room, but by how well that experience is communicated, understood, and supported.