Adapting a mental health program for people with multiple myeloma and smouldering myeloma: a consumer-informed...

Consumer involvement in mental health interventions is recognised as essential to producing research that is relevant, acceptable, and ultimately more effective. Here, we report on a mixed-method pilot study to evaluate the suitability of an existing mental health program for people living with incurable blood cancer, multiple myeloma, and precursor form, smouldering multiple myeloma. The study sought to identify consumer-informed recommendations to guide the future adaptation of a bespoke mental health program for this population who face significant psychosocial distress due to disease and treatment-related symptoms and burden. Twenty consumers (38-72 years) with multiple myeloma (n = 16) and smouldering multiple myeloma (n = 4), as well as Myeloma Australia nurses (n = 4), pilot-tested an existing online mental health program-the Be Well Plan. After program delivery, feedback surveys and semi-structured focus groups were used to inform future program adaptation. Pre-post assessment of empowerment, mental wellbeing, anxiety and depression were analysed to identify preliminary signals of change and inform future trial planning. Satisfaction with and feasibility of the program was encouraging. Qualitative thematic analysis of post-program feedback revealed several themes including the importance of connecting with other consumers, the need for myeloma-specific adaptation, and delivery, facilitation, and clinical implementation considerations. Univariate ANOVAs indicated significant improvements with large effects in both mental wellbeing (η_p² = .24) and empowerment (η_p² = .25), with non-significant effects on anxiety and depressive symptoms, providing important insights for future adequately powered trials. This study provides preliminary evidence of the feasibility and acceptability of a mental health program which will guide the adaptation and testing of a future myeloma-specific program, ensuring it is person-centred and designed for optimal sustainability, implementation and impact.