Development, evaluation and patient experiences of eHealth in the care of abdominal aortic aneurysm

Sammanfattning: Abdominal aortic aneurysm (AAA) is a weakening and widening of the abdominal aorta to a diameter of 30 mm or more. It is a fairly common condition among older men, and rarely occurs in women. The condition is generally asymptomatic with a slow expansion rate over time. However, AAA rupture is associated with a high mortality and immediate surgical intervention is required. Patients with larger AAA are offered surgical repair to prevent future rupture. Diagnosis, surveillance and surgical treatment impact patients’ wellbeing negatively, and previous studies have highlighted the need for adequate and timely information to prepare patients for the surgical care trajectory. However, patients’ learning needs and perceptions of methods for patient education had not been clarified. Furthermore, little was known about the utilization of modern technology for learning among patients with AAA. The overall aim of this thesis was to investigate the perceived need of learning and psychosocial support in patients with AAA, and evaluate methods to accommodate these needs in a clinical setting. The thesis comprises four scientific papers. Studies I and IV are qualitative interview studies, study II uses mixed methodology and study III is a randomized, controlled trial. Study I aimed to describe AAA patients’ perceived learning needs and explore their experience of different methods for patient education. Our results show that patients’ learning needs are not met by the health care staff, and that they therefore refer to other sources for information. Participants warranted continuous contact with a trusted person for follow-up and support. In study II, an eHealth tool was developed and validated for patients with AAA using a participatory design process. Patients, eHealth developers and health care staff were engaged in the design process, and readability analyses were performed. The final version of the eHealth tool was deemed accurate and relevant, and the language was perceived as understandable. However, the readability analyses produced readability scores exceeding the average literacy levels of older adults. Study III was a randomized, controlled trial with 120 patients scheduled for AAA repair. In the study, the eHealth tool and tailored psychosocial support was evaluated as an adjunct to standard care. The intervention was evaluated by repeated measurements with validated instruments (HADS and SF-12) to assess symptoms of anxiety and depression, and healthrelated quality of life. In the intervention group, 30 participants (50%) used the eHealth tool. App users were younger and had higher educational level than non-users. No significant difference was noted in anxiety mean score analyses between the whole intervention group and the control group. Those who utilized the complete intervention had markedly lower anxiety mean scores at the postoperative follow-up compared to the control group. Patients with low educational level had sustained high anxiety levels postoperatively. In study IV, a qualitative evaluation of the intervention by individual, in-depth interviews with 12 participants from the intervention group in study III was performed. When offered the eHealth tool, participants familiarity with modern technology was influential in their decision to engage in the tool. Those who were unfamiliar with this technology refrained from using the eHealth tool. Furthermore, their mental state at baseline, one week prior to surgery, hindered them to partake in the intervention. The implication and relevance of psychosocial support was not evident to the participants during the perioperative phase but could be understood in retrospect. Adjustment of information to the patient’s mental state and learning needs was believed to quench anxiety. In summary, this thesis provides insight into patients’ perspective on learning and psychosocial support in the AAA care trajectory. It also elucidates the feasibility and effects of an eHealth intervention to decrease anxiety. The studies also shed light on vulnerable groups which risk negative consequences of the digitalization of healthcare, such as those with low educational level and older patients. For successful implementation of eHealth services, future research and quality improvement initiatives should include targeted initiatives to strengthen these groups.