Abstract

Background:Axial Spondyloarthritis (axSpA) is associated with a high degree of functional limitation in daily life activities. However, few studies have evaluated the social and family burden from the patient’s perspective.Objectives:To describe the impact of axSpA on social and family life since disease onset, and the associated PROs.Methods:Data from 2,846 unselected patients of the European Map of Axial Spondyloarthritis (EMAS) study through an online survey (2017-2018) across 13 European countries were analysed. The impact of axSpA on social and family life were assessed through four PROs: i) Impact on relationships with the spouse, family, friends, neighbours, and work colleagues since disease onset (5 point Likert scale; 1 “much better” – 5 “much worse”; ii) Frequency of social activities including outings to bars/restaurants, cinema/theatre/museums, practising sports, travel/excursions, and intimate relations since disease onset (5 point Likert scale; 1 “much more” – 5 “much less”); iii) Adaptations made to cope with axSpA since disease onset (yes/no question); iv) The degree of functional limitation in 18 daily activities (3 point Likert scale). Self-reported BASDAI (0-10), spinal stiffness (3-12), functional limitation (0-54), and psychological distress (GHQ-12) were analysed using Pearson’s correlation comparing the impact on relationships and frequency of social activities since disease onset.Results:Among 2,846 participants, mean age was 43.9 years, 61.3% were female, 48.1% had a university degree. The greatest impact on relationships (sum of ‘worse’ and ‘much worse’) since disease onset were those with work-colleagues (44.5%), friends (35.6%), and spouse (30.4%). Sport was the activity they reduced the most since disease onset (64.2%), followed by travel/excursions (57.3%) and intimate relationships (56.4%) (Fig. 1). 55.5% had purchased comfortable shoes (N = 2748) and 43.9% had made adaptations to their workplace (N = 2651). For those who reported their level of functional limitation in daily activities, the greatest limitations were in physical exercise (85.5%), cleaning the house (84.4%) and using stairs (79.2%) (Fig. 2). In the correlation analysis, BASDAI, spinal stiffness, functional limitation, GHQ-12 were associated with a worsening in all of relationships and social activities (p < 0.001) (Table 1).Table 1.Pearson’s correlation between social and family life changes and PROsRelationships: 1 much better – 5 much worseBASDAISpinal StiffnessFunctional LimitationGHQ-12Spouse0.157*0.130*0.167*0.258*Family0.162*0.133*0.138*0.206*Friends0.211*0.173*0.180*0.282*Neighbours0.210*0.165*0.112*0.229*Work colleagues0.229*0.153*0.213*0.334*Frequency activities: 1 much more – 5 much lessBars / restaurants0.261*0.246*0.314*0.316*Cinemas / theatres / museums0.291*0.243*0.299*0.338*Do sports0.271*0.213*0.240*0.242*Travel / excursions0.308*0.218*0.307*0.362*Intimate relations0.284*0.254*0.288*0.321**p <0.001Figure 1.Reported social and family live changes since disease outsetFigure 2.Reported level of functional limitation in daily live activitiesConclusion:For most participants the onset of axSpA marked the worsening of personal relationships in different areas, as well as the reduction of social, leisure, and entertainment activities.Acknowledgments:Funded by Novartis Pharma AGDisclosure of Interests:Marco Garrido-Cumbrera: None declared, Victoria Navarro-Compán Consultant of: Abbvie, Lilly, Novartis, Pfizer, UCB, Speakers bureau: AbbVie, MSD, Lilly, Novartis, Pfizer, UCB, Christine Bundy Grant/research support from: Has received unrelated honoraria from Abbvie, Celgene, Janssen, Lilly, Novartis, and Pfizer., Raj Mahapatra: None declared, Souzi Makri: None declared, Sergio Sanz-Gómez: None declared, Laura Christen: None declared, Carlos Jesús Delgado-Domínguez: None declared, Denis Poddubnyy Grant/research support from: AbbVie, MSD, Novartis, and Pfizer, Consultant of: AbbVie, Bristol-Myers Squibb, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB, Speakers bureau: AbbVie, Bristol-Myers Squibb, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB

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