Objectives/purpose
Immunotherapy has rapidly become part of usual medical lung cancer care, however the ability of people receiving these treatments to participate in rehabilitation remains largely unknown. The aim of this study was to co-design a rehabilitation program for people with lung cancer during and following immunotherapy.
Procedures
Experience-based co-design was used, involving distinct phases: 1) patient and healthcare professional interviews to create a trigger film of key experiences (‘touchpoints’) of immunotherapy and rehabilitation; 2) separate healthcare professional and consumer workshops to identify priority areas for future service design; and 3) combined workshops to design and refine the prototype program. Data were coded by two researchers guided by the Consolidated Framework for Implementation Research.
Results
Over 10 months, 10 interviews and five workshops involving 17 participants (seven patients, one consumer and nine exercise healthcare professionals) from three Australian states were conducted online.
Key themes included: side effects and their severity varied significantly but were generally more tolerable than chemotherapy; the prospect of starting immunotherapy was motivating for some; rehabilitation information was lacking and access varied. Rehabilitation enablers included supervision and monitoring from healthcare professionals with expertise in cancer and breathlessness management; performing enjoyable activities; and discussing rehabilitation with oncologists and nurses as part of treatment planning. Lack of education about symptom control when exercising was a barrier.
Essential rehabilitation elements included individualisation with progression or regression; group-based to facilitate socialisation; flexibility to perform centre-based or home-based programs; linkage to community programs following completion. Program components included education (including breathlessness, fatigue management; online and hard-copy), aerobic and strength exercises. Screening for additional needs, including psychology, was desired although the limitations with accessing services were noted.
Conclusions and clinical implications
With consumers and healthcare professionals we co-designed a rehabilitation program which is currently being pilot tested for feasibility, acceptability and preliminary effectiveness.