ABSTRACT
Background
Lower-grade gliomas (LGG) are a subgroup of primary brain tumours. People with LGG often live long-term with wide-ranging symptoms and impairments (e.g., seizures, cognitive impairment) and uncertainty about their disease progression. Self-management interventions can improve quality-of-life (QoL) in cancer survivors; however, adaptability, acceptability, and feasibility of existing interventions for people with LGG is unclear.
Aims
Co-design, with multiple stakeholders, an early prototype supported self-management intervention for people with LGG.
Methods
Co-design activities followed two sequential phases. Phase one comprised three semi-structured interview sets with people with LGG, caregivers, and healthcare professionals (HCP). Desired support and design preferences were inductively identified and mapped to the TIDieR checklist; this informed a paper prototype outline. Phase two comprised four discussion groups with people with brain tumours, caregivers, and HCPs, and a survey. These activities considered the prototype design, feasibility, and acceptability. A preliminary intervention logic model was developed from Phases one and two, evidence and self-management theory.
Results
Early co-design findings indicate preference for a blend of online and face-to-face access to information and support with consideration given to technology literacy and accessibility. A support ‘toolkit’ was desired for advice, signposting, and support, with the option for caregivers to access intervention content, where appropriate. To improve QoL, the intervention needs to improve symptom knowledge and self-efficacy for symptom management, and support psychological adjustment and independence.
Conclusions
This groundwork, involving multiple stakeholders, will help ensure intervention acceptability, feasibility and effectiveness. There is scope for wider applicability to other brain tumour groups.