Co-design and evaluation of a communication intervention package for people living with a brain tumour

Despite the high prevalence of communication difficulties with a brain tumour, research into interventions to ameliorate these difficulties is lacking. This study aimed to co-design, develop, and trial a patient-centred, communication intervention for people living with brain tumours. A three-stage study design was used. Stage 1 involved co-design and development of the intervention including qualitative interviews with consumers and significant others (n =21) and a consumer advisory group. People with a brain tumour and their families described that the ideal intervention would be flexible with regards to the content, timing, duration, and format; individualized (including therapy delivery format and tasks); and involve education. Stage 2 focused on development of the intervention. Stage 3 involved feasibility testing and preliminary efficacy assessment of the new intervention, with two participants completing the intervention. The intervention was perceived as acceptable to participants; of interest to health professionals, patients, and families; and practical to deliver; however, due to the small sample size of stage 3, the feasibility of the intervention remains unknown. The key outcome was the development of a co-designed, person-centred, goal-based communication intervention for people with brain tumours. The intervention has been further refined and is currently under evaluation in a randomized controlled trial.