Exploring disease perception in Behçet's syndrome: combining a quantitative and a qualitative study based on a narrative medicine approach.

BACKGROUND: Behçet Syndrome (BS) has a significant psychological and social impact on patients, caregivers and families. The present study aims at exploring disease perception in BS patients, using both a co-designed survey and the narrative medicine (NM) approach. METHODS: An ad-hoc questionnaire was co-designed by clinicians expert in BS, BS patients and caregivers and BS adult patients were invited to answer the online questionnaires. Cluster analysis was used to analyse data from the survey and to identify groups of patients with diverse disease perception. To further explore real-life perspectives, the stories of illness of a smaller group of adult BS patients were anonymously collected online and analysed by means of text, sentiment and qualitative analysis. RESULTS: Two hundred and seven patients answered the survey and forty-three stories were collected. The cluster analysis highlighted that accepting or not the disease has a strong impact on the daily life, on how BS patients perceive themselves and in terms of hope for the future. The stories revealed that patients often address common issues, such as the long and complex journey faced from the disease onset until the BS diagnosis, which was strongly connected to the concept of time and perceived as an exhausting period of their lives. CONCLUSION: To our knowledge, this is the first study that addressed disease perception also applying the NM principles in BS. The current perception that BS patients have of their disease should encourage the BS scientific and patient community in joining forces in order to improve the journey of BS patients.

A systematic literature review of existing tools used to assess medication adherence in connective tissue diseases: the state of the art for the future development of co-designed measurement tools.

Lack of medication adherence is frequent in chronic connective tissue diseases and is associated with poorer health outcomes, low quality of life and economic loss. This research is based on a systematic literature search and aims to identify the surveys and tools used for the assessment of medication adherence in patients with connective tissue diseases (CTDs) and in particular the tools co-designed with patients. A systematic literature review was performed in PubMed and Embase databases searching for studies concerning the application of surveys or tools designed for medication adherence assessment. A specific analysis was also performed to identify which of these existing tools were developed in co-design with patients affected by CTDs. 1958 references were identified, and 31 studies were finally included. Systemic lupus erythematosus was the most investigated disease, followed by the Behçet's disease. The tools used to assess adherence in CTDs were, in most cases, valid and useful. However, the results showed a certain degree of heterogeneity among the studies and the medication adherence assessment and measurement tools adopted, which were mostly based on selfreported questionnaire. No co-designed tools with patients were found. Low- and non-adherence were explored in some CTDs with valid and useful tools, while other CTDs still need to be assessed. Therefore, more efforts should be made to better understand the specific reasons for the low- and non-adherence in CTDs patients.

Endoscopic CO2 laser treatment of supraglottic carcinoma.

Aim of the study was to evaluate whether laser endoscopic microsurgery is a reliable and appropriate approach to treatment of laryngeal supraglottic cancer. A retrospective study was made of 12 patients (11 M/1 F; mean age 62.5 years) treated from December 1995 to October 2001 in the Department of Surgical Sciences and Organ Transplantations, Section of Otorhinolaryngology, University of Cagliari, Italy. Surgical steps and oncologic results are reported. These 12 patients with supraglottic cancer underwent transoral laser surgery (TNM classification: T1, 3 patients; T2, 9 patients; N-, 9 patients; N+, 3 patients; M-, 12 patients). On the basis of the different subsites removed, the following resections were performed: 1 limited excisional biopsy (false chord), 3 wide excisional biopsies (2 or 3 subsites), 2 simple epiglottectomies, 1 extended epiglottectomy, 3 horizontal supraglottic laryngectomies, and 2 horizontal supraglottic laryngectomies that were extended to the anterior commissure and to one arytenoid, respectively. Five patients underwent functional neck dissection, and one patient underwent post-operative radiotherapy at sites of tumour and lymph nodes. Temporary tracheotomy was carried out in 10 patients. Mean follow-up was 33.3 months. No local recurrences were noted. Local control was thus 100%. Aspiration was the main post-operative problem, but there were no cases of aspiration-associated pneumonia. Moreover, no patient needed laryngectomy or a permanent tracheotomy for aspiration. In conclusion, although our experience with supraglottic cancers treated by endoscopy is still too limited to confirm the definitive oncologic validity of this type of surgery, in our hands, it seems to be a reasonable tool in selected cases and a safe, time- and cost-effective alternative to traditional surgery or radiotherapy for selected supraglottic carcinomas.