A taxonomy of disease experiences of women with Sjögren’s syndrome from the perspective of the patient

Background In earlier studies of experiences of patients with Sjögren's Syndrome (SS), professionals interpreted the data and drew conclusions and implications. In the current study, patients had a major share in the interpretation and structuring of experiences, and a patient research partner was part of the research group in all phases of the study: planning, collecting data, organizing, analyzing, and reporting. Objectives The aim of this study was to examine the full spectrum of life experiences of women with SS in an integrated, hierarchical model, and to examine the degree to which the research participants experienced the sorted experiences themselves. Methods Patients structured and interpreted the data using a concept mapping technique. In a card-sorting task, 52 patients with SS from the Netherlands grouped 75 experiences in piles. These experiences came from previous in-depth interviews with Chilean patients [1]. Hierarchical cluster analysis yielded an integrated, hierarchical model of these sortings. The 52 patients indicated on a 4-point Likert scale whether they had had these experiences themselves: agree, agree a little, disagree a little, disagree. Results Hierarchical cluster analyses showed a main 6-category clustering of experiences with primary symptoms, emotional processing, social interaction, self-management, ignorance, and physicians. Four of these categories showed underlying clusters of experiences (see Figure). Patients generally agreed to have common experiences of “primary symptoms”, “role functioning barriers”, and “diagnosis” and they commonly disagreed with the “psychologizing” symptoms, while they differed in the degree to which they had individually experienced the other experiences. Conclusions Life experiences of women with SS were summarized in an integrated, hierarchical model consisting of 14 clusters in 6 overarching categories. The results may be colored by the cultural background of the participants. This year this concept mapping study will be extended to patients from Chile, which will increase the generalizability of the findings and allow cross-cultural comparison. The final hierarchical overview with life experiences from the patient's view can be used to improve screening in clinical consults, develop a questionnaire, give direction to future research, and enhance education and self-management support [cf. 2]. The method gives ample room to really incorporate the patient perspective in research. References Rojas-Alcayaga G et al. Illness Experiences in women with oral dryness as a result of Sjögren's syndrome: The patient point of view. Musculoskeletal Care 2016;14: 233–42. Ammerlaan JW et al. Building a tailored, patient-guided, web-based self-management intervention 'ReumaUitgedaagd!' for adults with a rheumatic disease. JMIR Res Protoc 2016;5:e113