This research aimed to explore and explain how people make sense of long-term health conditions. Using purposive and theoretical sampling within a grounded theory design, experiences of thrombophilia and asthma were explored. The article focuses on information gained by patients before diagnosis and how this contributes to their understanding. The study adopted a constructivist grounded theory approach, generating a theory of how individuals adapt to their long-term condition. Ethical approval was sought from the NHS and the institution at which the research was conducted. Data were collected through semi-structured interviews, with sixteen participants who had provided informed consent. Individuals with long-term conditions frequently gain knowledge about their condition before diagnosis, through clinical encounters, from friends, family or acquaintances, by linking specific symptoms to a particular condition, or through experiencing ongoing symptoms. Knowledge gained before the point of diagnosis enables individuals to become informed about their condition. Some of this knowledge may be accurate, some may be specific to them as individuals and some of it may be misunderstood or coincidentally linked to their condition. However, patients will use and rely on this knowledge, particularly in the absence of evidence to the contrary. Healthcare professionals may wish to talk through patients’ understanding of their condition at the point of diagnosis, in order to identify and correct misunderstandings and provide information of which patients are unaware. They could also use the opportunities offered at medication and other review touchpoints to review patients’ knowledge and understanding.

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