Development of an Evidence-Based and Theory-Informed Self-Management Intervention for People with Lipoedema: An Intervention Mapping Study

BACKGROUND: The etiology of lipoedema remains unclear, making diagnosis and treatment challenging. Current treatment primarily consists of general lifestyle recommendations, with effective self-management being essential for integrating these recommendations into daily life. However, no self-management interventions currently address the unique needs of people with lipoedema. This study aimed to develop an evidence-based, theory-informed intervention to enhance self-management in people with lipoedema using the Intervention Mapping (IM) approach. METHODS: Following the first four steps of the IM approach, this study used a participatory methodology involving stakeholders, empirical data, and theory. Steps included: 1) needs assessment; 2) identification of outcomes, performance objectives, and change objectives; 3) selection of behavioural change methods; and 4) development of program components. RESULTS: The resulting intervention includes a program for people with lipoedema and a training program for healthcare professionals (HCPs). The intervention aims to empower patients to engage in self-management and equip HCPs to provide effective support. Key determinants targeted include self-efficacy, self-regulation skills, knowledge, attitudes, and social facilitation. The program for people with lipoedema consists of seven themes aligned with self-management behaviours and is delivered through 19 sessions: seven one-on-one sessions, one session involving supportive individuals, and 11 group sessions. The program for HCPs is delivered through six group sessions, each focusing on the core skills HCPs need to effectively deliver self-management support to their patients. CONCLUSION: The IM approach effectively guided a systematic, transparent, and reproducible development process. Grounded in established theories and behavioural change methods, the intervention provides a strong foundation for implementation and evaluation among people with lipoedema. The fifth and sixth steps of IM are considered future priorities.