Co‐Designing Lung Cancer Rehabilitation Services for People Treated With Immunotherapy

BACKGROUND: Immunotherapy has rapidly become part of lung cancer care, however the ability of people to participate in rehabilitation in conjunction with immunotherapy remains largely unknown. The aims of this study were to (a) understand stakeholder perspectives of lung cancer immunotherapy treatment and (b) co-design a rehabilitation programme for people with lung cancer during and following immunotherapy. METHODS: Experience-based co-design, involving three distinct online phases: (1) patient, carer and healthcare professional interviews to understand immunotherapy and rehabilitation experiences; (2) separate workshops for healthcare professionals and patients/carers, to identify priority areas for future rehabilitation programme design; and (3) combined workshops to refine the draft programme. Transcripts were analysed by two researchers, guided by the Consolidated Framework for Implementation Research. RESULTS: Seventeen stakeholders were involved in the interviews and/or workshops: seven patients, one carer and nine exercise healthcare professionals. Key themes included: immunotherapy side effects varied but were generally more tolerable than chemotherapy; rehabilitation information was lacking, and access varied; healthcare professional training in immunotherapy was limited. Rehabilitation enablers included supervision and monitoring from healthcare professionals with expertise in cancer; routine rehabilitation discussion with oncologists and nurses; dedicated funding. Lack of education about symptom control when exercising was a barrier for patients. Essential rehabilitation elements included individualised programmes, group-based, flexibility for centre- or home-based programmes. Programme components included education, aerobic and strength exercise and screening for nutrition and psychology needs. CONCLUSIONS: This research has furthered understanding of the lung cancer immunotherapy treatment journey and identified key design requirements of a rehabilitation programme. PATIENT OR PUBLIC CONTRIBUTION: Two patient advocates contributed to this study as members of the project steering committee. Their contributions for this study included reviewing and providing feedback on the proposed study design and the interview and workshop topic and question guides. Patient, carer and healthcare professionals co-designed the rehabilitation programme through individual interviews and a series of small-group workshops.