Background & Aims
Fibromyalgia is a persistent condition that causes widespread pain, muscle stiffness, fatigue, and sleep problems, among other symptoms. The severity of the symptoms and their enormous impact on the daily lives of people who suffer from the disease often translate into high degrees of distress, discomfort, and frustration (Dow, Roche & Ziebland, 2012). For this reason, we wanted to evaluate perceptions about their pain and daily limitations through a qualitative approach, combined with the collection of quantitative data to be able to contrast both approaches and thus obtain a more holistic and complete view of fibromyalgia patients’ ways of living and understanding their condition. We want also to focus on their perceptions about the use of Information and Communication Technologies (ICT), since can be very useful for facilitating the care they need.
Methods
A sample of 24 people (23 women and 1 man) with fibromyalgia who had previously attended a multicomponent intervention in a hospital from Barcelona were invited to participate. They were interviewed individually, following a semi-structured schema including topics related to: general symptomatology, severity and temporality, impact on daily life, treatments followed, and use/perception of ICTs for the disease management. Interviews were transcribed and we are working in two types of analyses. We are conducting a qualitative analysis, aimed to identify the topics they commented on. Also, a sentiment analysis was carried out using syuzhet, an R package that allows extracting information about the emotional connotation of the language of a text. Correlations of the sentiment analyses with the following standardized questionnaires were computed: Revised Fibromyalgia Impact Questionnaire (FIQ-R), Tampa Scale of Kinesiophobia (TSK-11), and Hospital Anxiety and Depression Scale (HADS A – D).
Results
As commented, we are at this moment conducting the qualitative thematic analysis. Results of the sentiment analysis showed that the predominant emotion in the fibromyalgia patients’ reports was sadness (mean 0.35, SD 0.07), highlighting the repeated use of expressions such as “pain”, “discomfort”, “disability”, “impossible”, “hard” or “cry”. The second more predominant emotion was fear (mean 0.18, SD 0.02). The least frequently observed emotions were surprise (mean 0.04, SD 0.02) and joy (mean 0.06, SD 0.03). Results of standardized questionnaires denoted an average of moderate kinesiophobia in TSK-11 (mean 24.13, SD 6.03), an elevated degree of general dysfunction and impact of the illness through FIQ-R (mean 73.80, SD 16.31), as well as moderate/high levels of anxiety and depression in HADS A (mean 12.63, SD 4.67) and HADS D (mean 11.33, SD 4.92). No significant correlations were found between sentiment analysis and the standardized tests.
Conclusions
The speeches of people who suffer from fibromyalgia tend to be mainly focused on negative emotions, essentially sadness and fear. This study also highlights the high level of dysfunction they report, as well as the moderate/high levels of anxiety and depression they experience, reported through both the semi-structured interviews and the self-report questionnaires. Considering the frequent comorbidity of anxious-depressive disorders with fibromyalgia (Galvez-Sánchez, Duschek & Reyes del Paso, 2019), it becomes imperative to meticulously assess and intervene in affective symptoms among patients with fibromyalgia. From their views, it seems plausible using ICT to help them.
References
Dow, C. M., Roche, P. A. & Ziebland, S. (2012). Talk of frustration in the narratives of people with chronic pain. Chronic Illness, 8(3), 176-191. DOI: 10.1177/1742395312443692.
Galvez-Sánchez, C. M., Duschek, S. & Reyes del Paso, G. A. (2019). Psychological impact of fibromyalgia: current perspectives. Psychology Research and Behavior Management, 12, 117-127. DOI: 10.2147/PRBM.S178240.
Presenting Author
Xenia Porta
Poster Authors
Xenia Porta
PhD Student
Universitat Oberta de Catalunya
Lead Author
Rubén Nieto
PhD
Universitat Oberta de Catalunya
Lead Author
Pierre Bourdin
PhD
Universitat Oberta de Catalunya
Lead Author
Mayte Serrat
PhD
Hospital Vall d'Hebron
Lead Author
Sònia Moretó
MD
Universitat Oberta de Catalunya
Lead Author
Topics
- Specific Pain Conditions/Pain in Specific Populations: Fibromyalgia