ReSTORE-PE (Rehabilitation to Support Total Recovery after Pulmonary Embolism): Development of a co-designed...

Approximately 50% of pulmonary embolism (PE) survivors experience persistent physical and psychological symptoms consistent with post-pulmonary embolism syndrome (PPES), negatively affecting quality of life, functional recovery, and engagement in healthy lifestyle behaviours. Although rehabilitation is recommended following PE, limited evidence exists to guide intervention design for this population.

To develop a rehabilitation programme prototype to support physical and psychological recovery in individuals living with PPES using a theory-informed co-design process.

Intervention development followed the United Kingdom Medical Research Council framework and incorporated the Behaviour Change Wheel, Theoretical Domains Framework (TDF), Behaviour Change Techniques Ontology, Behaviour Change Intervention Ontology, and Theory and Techniques Tool. A three-stage co-design process was undertaken: (1) behavioural analysis, (2) selection of intervention components, and (3) refinement of the intervention prototype. Development was informed by two reviews, semi-structured interviews with people living with PPES (n = 31), and three co-design workshops involving people living with PPES (n = 5), clinicians, and academics (n = 8).

Behavioural analysis identified all 14 TDF domains, with key determinants including knowledge, beliefs about capabilities, emotion, environmental context, and social influences. These were mapped to eight intervention functions and more than 50 behaviour change techniques. Strongest evidence supported goal setting, self-monitoring, feedback, action planning, and graded tasks. A clinician-led, community-based rehabilitation programme was developed, integrating supervised exercise, education, psychological support, and self-management training.

ReSTORE-PE is a theory-informed, co-designed rehabilitation programme for people living with PPES that is ready for feasibility and acceptability testing. The transparent development process supports future implementation, evaluation, and replication.