The Development and Evaluation of a Psycho-education Booklet for Genetic Aortic Disorders

Introduction:Genetic aortic disorders (GA disorders) refer to a group of heritable conditions where the main artery of the heart, the aorta is affected. The commonality of GA disorders is the increased risk of serious cardiac complications such as an aortic tear or rupture. Affected individuals face multiple and complex medical and lifestyle challenges. Improving the individual’s understanding of the diagnosis, treatment, and associated impacts, is essential to facilitate coping, decision-making, and self-management. Evidence also show that patients who are more involved in the treatment of their chronic disease report improved health and psychological distress (Barlow et al., 2002). Currently available psycho-educational resources, however, are insufficient for those recently diagnosed with a GA disorder. The current thesis describes the development and evaluation of an evidence-based psycho-education booklet for patients recently diagnosed with a GA disorder Development:A patient psycho-educational booklet was developed based on a literature review, expert consultation, and guided by the National Health and Medical Research Council (NHMRC, 1999) recommendations. Evaluation:A mixed method design was implemented. Twenty individuals with a diagnosis of a GA disorder, mean age = 49 years, equal number of males and females, with varying stages of disease and treatment, were recruited to complete the patient evaluation questionnaire. A further seven individuals were recruited for patient group interviews. Nine clinicians with expertise in GA disorders completed the clinician evaluation questionnaire. Results: The overall findings of the evaluation indicated that the information booklet was very well-received by the patient group and was considered informative, easy to read, practical, and a highly valuable resource. Overall, the clinicians endorsed the booklet as an extremely useful information resource about GA disorders and associated topics and supported giving the booklet to patients at the time of diagnosis and approved its ongoing use in consultations. The majority of clinicians commended the content as suitably pitched for the intended audience, and the format as appropriate in length, booklet size, layout and graphics. Conclusion:This study aimed to develop and pilot evaluate a patient psycho-education booklet specifically for those recently diagnosed with a GA disorder. The evaluation showed that the booklet was considered very positively in its clarity, usefulness, and acceptability by the patients with a diagnosis of a GA disorder, and of usefulness, benefit, and acceptability by health professionals who provide medical support for patients with GA disorders. To our knowledge, this will be the first psycho-education booklet developed and evaluated for an Australian audience