Medizinische Universität Wien
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Sprechen wir über Sexualität und Multiple Sklerose: Ein Kommunikationsworkshop

Ziele/Motive/Ausgangslage

Zu Lernen, mit chronisch Kranken Menschen über Ihre Sexualität zu sprechen.

Kurzzusammenfassung des Projekts in deutscher Sprache

Multiple Sklerose (MS) ist die häufigste Ursache für eine (neurologische) Behinderung junger Erwachsener, abseits von Unfällen. In Österreich sind etwa 14,000 Menschen betroffen, weltweit sind es etwa 2,5 Millionen. In den letzten Jahren wurde in klinischen Studien vermehrt auf die verminderte Lebensqualität Betroffener hingewiesen. Seither ist die Erfassung der gesundheitsbezogenen Lebensqualität – abseits harter klinischer Endpunkte – ein erstrebenswertes Ziel.

 

Es ist bekannt, dass eine Störung der Sexualfunktion einen deutlichen Einfluss auf die individuelle Lebensqualität nimmt (Altmann P, et al., J Sex Med 2021; Altmann P, et al., Front Neurol 2021), wenngleich dieses oft nicht angesprochen wird. Im Rahmen eines Kommunikationsworkshops haben wir ein Konzept erarbeitet und erprobt, wie behandelnde MS-Ärztinnen und MS-Ärzte, einen Zugang zu dieser Thematik lernen können. Das Ziel soll es sein, Barrieren in der Kommunikation über Sexualität abzubauen, um diesem Aspekt der Lebensqualität von Menschen mit MS einen Raum in der kontinuierlichen Betreuung zu geben.

 

Der Workshop fand im WS 2020 statt und wurde auch objektiv evaluiert, das Evaluierungsergebnis liegt vor.

Kurzzusammenfassung des Projekts in englischer Sprache

Sexual dysfunction (SD) in people with multiple sclerosis (MS) is twice as common as in healthy individuals. It is known that sexuality can impact quality of life significantly. However, taking a sexual history is commonly avoided in clinical practice. As a result, SD often remains undiagnosed. Several barriers to communication about sexuality have been reported, the most frequent ones being a fear of crossing personal borders and a lack of experience with this topic or communication skills for that matter. This article describes the conception of a communication workshop aiming at (i) teaching simulated patients (SP) to authentically act as patients with MS experiencing SD and (ii) implementing these SP in a setting where neurologists can practice taking a sexual history and learn to investigate SD as part of MS care. Furthermore, we report on results from a peer evaluation of this workshop. Out of 10 participants, 9 reported a significant increase in their communication competence in four dimensions: (i) gathering information effectively, (ii) showing empathy, (iii) obtaining the information that is wanted, and (iv) understanding the problem.

Nähere Beschreibung des Projekts

The prevalence of sexual disorders is two to three times higher in people with MS compared to the general population [1, 2]. There is only limited data on mechanisms of this epiphenomenon and methodological quality of surveys on this matter varies greatly [3]. Yet, current research underlines the occurrence of altered sexuality in MS patients beyond the shadow of a doubt [4]. Nonetheless, several barriers to address this matter fence in scientific endeavors and are mostly rooted in different aspects of communication itself. Hence, there is an immanent need to expose such barriers and report on both the patients’ and doctors’ view on possible ways to integrate this topic in clinical practice.

A prominent study dating back to 1999 revealed that about 70% of patients stated they hardly ever expect help from their physicians regarding sexual problems. Common reasons given for this observation were dismissal of these concerns on the doctor’s side or simple discomfort in even talking about it. It was reported that 94% of women questioned had never been asked by their treating physician to discuss their sexuality in connection with their disease [5]. The fact that altered sexuality is interlaced with HRQoL in people with MS has been demonstrated. It was shown that sexual disorders correlate with clinical and radiological disease activity and there seems to be a tight connection of altered sexuality with other PROs such as depression, anxiety and fatigue [3, 6-9]. Furthermore, the risk of developing sexual dysfunction was associated with disease duration [9].

Symptoms of sexual dysfunction vary in men and women which is merely based on their different anatomy. Men most often experience erectile dysfunction, followed by lack of sexual arousal and lack of orgasm [10]. Sexually disabled women most frequently face loss of vaginal lubrication, followed by a lack of sexual arousal and decreased sensation in the pelvic area. Several attempts to categorize sexual dysfunction have been made, also particularly in MS [10, 11]. The most commonly accepted classification distinguishes primary, secondary, and tertiary sexual dysfunction. In short, primary sexual dysfunction in MS is caused by inflammatory damage to neuronal pathways conveying sexual arousal. Secondary sexual dysfunction involves symptoms of sexual impairment arising due to MS symptoms themselves, such as spasticity, pain, incontinence or weakness. Tertiary secondary dysfunction emerges from psychosocial implications of the disease such as conflicted relationships, low self-esteem or depression [11, 12].

1. Kessler TM, Fowler CJ, Panicker JN: Sexual dysfunction in multiple sclerosis. Expert Review of Neurotherapeutics 2009, 9:341-350.

2. Rosen RC: Prevalence and risk factors of sexual dysfunction in men and women. Current Psychiatry Reports 2000, 2:189-195.

3. Zorzon M, Zivadinov R, Locatelli L, Stival B, Nasuelli D, Bratina A, Bosco A, Tommasi MA, Pozzi Mucelli RS, Ukmar M, Cazzato G: Correlation of sexual dysfunction and brain magnetic resonance imaging in multiple sclerosis. Multiple Sclerosis Journal 2003, 9:108-110.

4. Marck CH, Jelinek PL, Weiland TJ, Hocking JS, De Livera AM, Taylor KL, Neate SL, Pereira NG, Jelinek GA: Sexual function in multiple sclerosis and associations with demographic, disease and lifestyle characteristics: an international cross-sectional study. BMC Neurology 2016, 16:210.

5. Marwick C: Survey Says Patients Expect Little Physician Help on Sex. JAMA 1999, 281:2173-2174.

6. Demirkiran M, Sarica Y, Uguz S, Yerdelen D, Aslan K: Multiple sclerosis patients with and without sexual dysfunction: are there any differences? Multiple Sclerosis Journal 2006, 12:209-211.

7. Foley FW, Zemon V, Campagnolo D, Marrie RA, Cutter G, Tyry T, Beier M, Farrell E, Vollmer T, Schairer L: The Multiple Sclerosis Intimacy and Sexuality Questionnaire — re-validation and development of a 15-item version with a large US sample. Multiple Sclerosis Journal 2013, 19:1197-1203.

8. Janardhan V, Bakshi R: Quality of Life and Its Relationship to Brain Lesions and Atrophy on Magnetic Resonance Images in 60 Patients With Multiple Sclerosis. Archives of Neurology 2000, 57:1485-1491.

9. Schairer LC, Foley FW, Zemon V, Tyry T, Campagnolo D, Marrie RA, Gromisch ES, Schairer D: The impact of sexual dysfunction on health-related quality of life in people with multiple sclerosis. Multiple Sclerosis Journal 2013, 20:610-616.

10. Lew‐Starowicz M, Rola R: Sexual Dysfunctions and Sexual Quality of Life in Men with Multiple Sclerosis. The Journal of Sexual Medicine 2014, 11:1294-1301.

11. Bronner G, Elran E, Golomb J, Korczyn AD: Female sexuality in multiple sclerosis: the multidimensional nature of the problem and the intervention. Acta Neurologica Scandinavica 2010, 121:289-301.

12. Lew-Starowicz M, Rola R: Prevalence of Sexual Dysfunctions Among Women with Multiple Sclerosis. Sexuality and Disability 2013, 31:141-153.

 

Mehrwert

Steigerung der Lebensqualität Betroffener und Abbau von Barrieren im Arzt/PatientInnen- Gespräch

Übertragbarkeit/Nachhaltigkeit

Ja

Das Beispiel wurde für den Ars Docendi Staatspreis für exzellente Lehre 2021 nominiert.
Ars Docendi
2021
Kategorie: Lernergebnisorientierte Lehr- und Prüfungskultur
Ansprechperson
Altmann, Patrick, Dr.med. Dr.scient.med.
Universitätsklinik für Neurologie
01/40160-10144
Nominierte Person(en)
Altmann, Patrick, Dr.med. Dr.scient.med.
Universitätsklinik für Neurologie
Themenfelder
  • Didaktische Methode
  • Kommunikation/Plattform
  • Weiterbildung Lehrende
Fachbereiche
  • Medizin und Gesundheitswissenschaften