Ab0863 Sexual Experience and Functioning in Female and Male Patients With Primary Sjögren’s Disease: A Qualitative Study

Background: Primary Sjögren's Disease (pSjD) has a major impact on sexual functioning, which is associated with anxiety, depression, relationship dissatisfaction and a lower mental quality of life.¹ However, sexual functioning has received limited attention in research and clinical encounters, and in particular the role of sexual implications on the full picture of suffering from pSjD is unknown. Objectives: The aim was to explore how pSjD affects sexual experience and functioning in women and men. Methods: This qualitative study was conducted within interpretative phenomenological approach by means of in-depth interviews conducted by a clinical psychologist with participants with pSjD who had a broad variation in relevant characteristics and sexual function. Sexual functioning was measured using the Female Sexual Function Index (FSFI, for females) or the International Index of Erectile Function (IIEF, for males) questionnaire. Reflexive thematic analysis was applied according to the six-phase process.² Results: Ten female and eight male participants aged 27 to 65 years old were included in the study. According to the FSFI and IIEF, 60% of the female participants and 50% of the male participants had sexual dysfunction. It was found that sexual experience and functioning in female and male patients with pSjD entails a complex interaction of personal, interpersonal, and biopsychosocial factors. Six themes were identified to be important in sexual experience and functioning: 1. chronic stress in life; most participants had experienced several traumatic life events and endured highly stressful periods before their diagnosis of pSjD, 2. symptoms of pSjD (affecting sexual experience); frequently mentioned symptoms were frequent pains due to infections, invalidating fatigue, dry eyes, dry mouth (e.g., reducing speech-ability), day-to-day decreased vitality, vaginal dryness and erectile dysfunction. Most participants had a negative body image, which was associated with the extent to which sexuality-related symptoms arising from pSjD affected their sexual life, 3. invisible suffering of pSjD; due the nature of pSjD, participants contend with feelings of loneliness in the process of coping with their diagnosis and (sexuality-related) symptoms, 4. impact of illness perception on coping strategies sexuality-related symptoms, 5. the quality of (sexual) partner-relationship; regardless of reported physical sexual functioning, the quality of partner-relationships seemed to significantly account for sexual experience, and 6. the taboo of sexuality; addressing sexuality and sexuality-related symptoms openly was seen as challenging and shameful for participants due to societal taboos. These themes interact with each other and together shape the sexual experience of the participants (Figure 1). Conclusion: Sexual experience is shaped by far more factors than physical sexual functioning alone. Many of the interviewed patients reported an unmet need for support, advice and treatment of sexuality-related symptoms related to pSjD within healthcare. Future research into sexual experience and treatment of patients with pSjD should focus on the patient as a whole person, and not solely on sexuality-related (physical) symptoms. The themes generated in this study provide valuable insights into understanding the factors that shape sexual experience in patients with pSjD and underscore the importance of addressing sexuality-related symptoms as part of holistic care for patients with pSjD. REFERENCES: [1] Van Nimwegen JF, Arends S, Van Zuiden GS, Vissink A, Kroese FGM, Bootsma H. The impact of primary Sjögren's syndrome on female sexual function. Rheumatology (Oxford). 2015 Jul 1;54(7):1286–93. DOI: 10.1093/RHEUMATOLOGY/KEU522 [2] Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019 Aug 8;11(4):589–97. DOI: https://doi.org/10.1080/2159676X.2019.1628806 Acknowledgements: This study was supported by a grant from ReumaNederland. Several authors of this publication are member of the European Reference Network ReCONNET. Disclosure of Interests: Dagmar Rebel: None declared, Davy Paap: None declared, Liseth de Wolff: None declared, Frans G.M. Kroese Has received unrestricted grants, consultant and speaker for Bristol-Myers Squibb, speaker for Roche and Janssen-Cilag., Has received unrestricted grants, consultant and speaker for Bristol-Myers Squibb, speaker for Roche and Janssen-Cilag., Has received unrestricted grants, consultant and speaker for Bristol-Myers Squibb, speaker for Roche and Janssen-Cilag., Grieteke Pool: None declared, Hendrika Bootsma Is speaker for Bristol-Myers Squibb, AstraZeneca and Novartis., Is consultant for ArgenX, Bristol-Myers Squibb, Roche, Novartis, Union Chimique Belge., Has received unrestricted research grants from Bristol-Myers Squibb, Roche and AstraZeneca.