Outpatient care of adults with congenital heart disease in the UK: a qualitative appraisal of the clinician perspective

Figures

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  Figure 1. Three theoretical models are used to provide context to the research problem, develop the study design and aid in data interpretation: chronic care model, which empowers the patient and the primary care team and has been shown to produce high-quality care in other chronic disease settings, through a patient-centred, population-based approach,7 THRIVE model, which explores six elements that influence how patients cope with clinical and social aspects of chronic disease8 and candidacy theory, which considers how people perceive their eligibility to access healthcare, navigate services and assert candidacy, reflecting that difficulties at each stage are typically associated with deprived populations.9

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  Figure 2. Timeline of subject recruitment. Pink boxes indicate organisations approached to disseminate the study among their contacts. Dark blue symbols indicate participants. Pale blue symbols indicate individuals who expressed interest but did not participate (five unable to find time, two did not respond to follow up emails, one excluded a purposive sampling). ACHD, adult CHD; BACCNA, British Adult Congenital Cardiac Nurses’ Association; CHD, congenital heart disease; PCCS, Primary Care Cardiology Society; PCN, primary care network; RCGP, Royal College of General Practitioners.

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  Figure 3. Schematic of ACHD ambulatory care, placed in contrast to the chronic care model. In present, ACHD ambulatory care, key knowledge, responsibilities and decision-making are the remit of the ACHD specialist supported by the specialist nurse (who is not universally accessed by all patients with ACHD) with little or no knowledge, responsibility or decision-making in primary care. In the chronic care model, strong healthcare organisation with key features highlighted in the figure better informs and empowers the patient and elevates the level of knowledge, responsibility and decision making in primary care. ACHD, adult congenital heart disease.