Co-designing a rehabilitation pathway for lung cancer
Researchers have used a co-design approach to develop a prototype of a comprehensive preoperative and postoperative rehabilitation program for patients with operable lung cancer.
Patients who undergo surgery for lung cancer typically have a high symptom burden during their recovery, including pain, dyspnoea, cough, fatigue, sleep and mood disturbances as well as functional impairments to their mobility, muscle strength and exercise capacity.
While exercise rehabilitation programs have been shown to improve symptoms and aid recovery, historically they have not been well integrated into clinical practice.
A team based at the University of Melbourne hopes to change this. Using an experience-based co-design process, the researchers worked with patients, carers, multidisciplinary healthcare professionals and lung cancer consumer advocates.
Together, they identified the needs of the patient group alongside the enablers and barriers to a good recovery.
Based on their findings, they have designed a prototype program that offers a flexible and individualised approach to preoperative and postoperative rehabilitation.
‘Our intervention represents something that may be more acceptable, feasible and scalable than current care, which isn’t meeting the needs of our patient population,’ says lead author Georgina Whish-Wilson APAM, who recently submitted her PhD at the University of Melbourne before moving to Central Queensland University.
The project, which was recently published in the open access journal Health Expectations, was funded by a Physiotherapy Research Foundation Seeding Grant in 2022.
A series of workshops formed the foundation of the project.
To understand the patient experience and identify the barriers and enablers in the current lung cancer journey, researchers used two groups: one consisting of patients and carers and the other comprising clinicians, researchers and lung cancer advocates.
In the first round, both groups looked separately at what was working and what wasn’t and identified gaps in the current care pathway, mapping their findings to 19 themes across the patient journey, from diagnosis and preadmission to hospital admission, subsequent discharge and long-term recovery.
The themes included unmet education needs, the link between mental health and recovery, challenges associated with unexpectedly persistent symptoms and functional decline.
Georgina Whish-Wilson
‘We found that the greatest barriers and gaps in patient recovery were in that post-discharge, long-term recovery phase, recovering in their own home following surgery and discharge.
'These barriers included the patient’s symptoms, activity limitations, limited guidance on what to expect and a general lack of information about potential symptoms and how to manage them,’ Georgina says.
She notes that while hospital care up until the point of discharge was generally quite good, patients reported feeling abandoned by the health system once discharged, with no-one around to share the symptoms they were experiencing.
One aspect that the researchers didn’t expect was the importance of mental health during the entire care continuum, from diagnosis to long-term recovery.
‘For some patients, feeling overwhelmed, stressed, anxious or low influenced their ability to actively participate in their recovery.
'For other patients, unexpected symptoms, unanticipated functional decline or difficulty in doing treasured activities such as heading out with family or going to work had negative effects on mental health.
'This underlined the importance of embedding mental health support within the program,’ says Georgina.
Following the analysis of the first round of workshops, the two groups of patients and professionals were combined for a second round of workshops to further explore the themes identified and to start designing the prototype of a preoperative and postoperative rehabilitation program.
Georgina says that overall, the two groups had similar preferences and beliefs about how the program should look, although the patient group was keen on the idea of home visits while the clinician group was more pragmatic about the feasibility of home-based programs.
Patients noted the importance of receiving education up-front and having continuity of care and access to support throughout the journey from diagnosis to recovery.
The resulting prototype program includes several time points across the patient journey, from diagnosis and pre-admission to the surgery, associated hospital stay and the recovery period.
The main components include screening and assessment activities, education, exercise and mental health support through a mix of delivery modes including in the hospital system, via telehealth and at home.
The proposed program would be introduced as early as possible in the lung cancer diagnosis process.
It would involve at least one appointment with a physiotherapist, cancer nurse or other appropriate clinician, delivered in the hospital as part of the pre-admission process or via telehealth.
The appointment would include screening and assessment of any preoperative or postoperative risk factors, patient education and development of an exercise program.
The next main point of contact would be when patients are getting ready to go home after surgery and would again include screening and assessment, education and a rehabilitation exercise program.
A final check-in would be conducted two to four weeks post-discharge, after which the program would give the patients options for individualised, ongoing support as needed.
‘We acknowledge that it needs to be quite adaptable because the postoperative course for these patients, particularly those undergoing further cancer treatments like chemotherapy or radiotherapy, can be unpredictable,’ Georgina says.
‘We’ve called that section “individualised monitoring and support” and that will look very different for different patients.’
The researchers hope to continue co-designing the program, particularly the specific interventions including exercise programs and educational materials.
Georgina notes that the health and digital literacy of the patient cohort will need to be taken into account.
She hopes to continue to work with her former colleagues at the University of Melbourne on the design, feasibility and acceptability of the program, ultimately leading to a randomised controlled clinical trial.
‘The beauty of this prototype intervention is that it is so adaptable—it is quite different from our more traditional pulmonary rehabilitation interventions where patients have to come in onsite a few times a week to do supervised exercise.
'Participants in this co-design were not so interested in a model like that.
'We also know that this type of model in lung cancer hasn’t been well implemented and so this is an alternative to that, which might require less staffing and might be more scalable.’
Reference: Whish-Wilson et al. Empowering Recovery: A Co-Designed Intervention to Transform Care for Operable Lung Cancer. Health Expectations. 2025 (28: e70196) doi.org/10.1111/hex.70196
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