Aim: Medical therapy tries to heal Meniere’s disease (MD) by resolving vertigo, gait problems and hearing loss, but very often the patients have problems and restrictions that reduce the quality of life. Web-based peer support can challenge these problems by being person-focused and available. We have created a peer support programme for MD that uses data base resources, applies artificial intelligence in decision making, and has a user centred approach in determining the impact of the disorder and in the patient empowering process.
Methods: Data was retrieved from 740 cases of MD to develop the program. The program uses pattern recognition in the diagnosis of MD. The impact of MD is assessed by ICF-based structured questions. Personal data on quality of life, personal traits, complaints, and attitude are collected interactively. The Norton-Kaplan model is applied to construct a strategic person-focused approach. By working on critical success factors, short term goals are then pursued.
Results: The peer-support program comprises the following elements: It first assesses the diagnosis and individual participant’s disorder profile. Thereafter it interactively determines the impact caused by the disorder using ICF classification, evaluates personal traits and attitudes towards the disorder, and identifies positive aspects. The eligibility of the subject to enter the program is based on their diagnosis and quality of life score. The inference engine uses a database to compare the impact of the complaints, personal traits and attitudes with 50 referents. In the therapeutic component, the participant defines vision, time frame, inspects confounding factors, determines goals, establishes a strategy and starts to work on the three most important ICF-based problems caused by the disorder. Interactively with the person, the program guides them to find solutions that minimise their restrictions. The program utilizes collaboration with significant others and enhances positive thinking. To assist the person to cope, reference data on coping strategy are retrieved from the database. In the outcome analysis, several measures including quality of life, post traumatic growth factor index and personal satisfaction are used. The program provides a hard copy of personal complaints, problems, strategy, attitude, goals and outcome measures. The information package contains pdf-files of major complaints, 240 animated slides and 12 video case histories. Among 235 persons participating in the data collection 75 % found the program question useful or very useful in supporting their life with Meniere’s disorder. Those with acute disease regained more information than those with chronic disorder. Among 31 participants passing the whole program the general health related quality of life (EQ-5D) improved by 14%.
Conclusions: We have created a web-based peer-support system that is user-centred, able to classify the characteristics, profile the impact of the disorder, assist in decision making, and interact with the individual participant. The programme contains a large database on the complaints and impact of MD. The modified Kaplan-Norton model is used to establish a personal strategy that empowers the participant and improves coping with the disorder.