Perceptions of sexuality in individuals with Amyotrophic Lateral Sclerosis (ALS) and their treating clinicians

Shahbazi, Mona; Holzberg, Shara; Thirunavukkarasu, Saeyoan; Ciani, Gioia

doi:10.3233/nre-172204

Cited by 5 publications

(4 citation statements)

References 22 publications

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“…A further, unique, study involved patients with ALS together with their treating clinicians and highlighted the importance of discussing sexual-related topics within a multidisciplinary ALS centre 8. The results showed that 52.4% of patients reported that ALS affected their sexual activity, in particular, sexual intercourse.…”

Section: Resultsmentioning

confidence: 99%

“…As outlined by the recent study of Shahbazi and colleagues,8 the need of patients for sexuality-related discussion is not addressed within multidisciplinary ALS clinics. In order to improve the discussion of sexuality bypassing personal discomfort and resistances of both patients and clinicians, a structured approach could be employed, as the one proposed by Marsden and Botell 23.…”

Section: Discussionmentioning

confidence: 99%

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Sexuality and intimacy in ALS: systematic literature review and future perspectives

Poletti

Carelli

Solca

et al. 2018

J Neurol Neurosurg Psychiatry

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Several features of amyotrophic lateral sclerosis (ALS) impact on sexuality and intimate relationship; however, the issue has received poor attention so far. We performed a systematic literature review in order to provide an up-to-date account of sexuality in ALS. References were identified by searches of PubMed, Web of Science, Scopus and PsycINFO (1970–2017, English literature). The following were the key terms: ‘sexual’ OR ‘sexuality’ OR ‘intimacy’ OR ‘marital’ AND ‘ALS’ OR ‘Amyotrophic Lateral Sclerosis’ OR ‘Motor Neuron Disease’ OR ‘MND’. Titles and abstracts were screened for relevance and a full-text analysis was performed on the selected articles. Studies were included if they referred to sexual well-being/activities/functions or intimate relationship between patients and their partners and management of such topic by clinicians. Eligibility assessment was performed independently by two reviewers. A thematic and level of evidence classification of studies was performed. Studies’ design, objectives, measurements and outcomes were summarised. Thirty articles were included and four topics were identified: intimacy in the dyads; sexual activities in patients and with their partners; sexual function disturbances; and sexuality and cognitive-behavioural alterations. The quality of the studies varies, with globally poor level of evidence. Some sexuality issues have been only sparsely addressed, such as gender-related differences, same-sex relationships and sexual activities other than intercourse. Sexuality in ALS is still not adequately considered by clinicians and researchers. We present preliminary recommendations for improving sexuality and intimacy at any ALS multidisciplinary clinics.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Sexuality and intimacy in ALS: systematic literature review and future perspectives

Poletti

Carelli

Solca

et al. 2018

J Neurol Neurosurg Psychiatry

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“…The high proportion of young patients under the age of 40 who answered they have these problems may require attention to sexuality-related problems. Previous study described that over 75% of clinicians reported that they were not familiar with any strategies or interventions to help patients with sexuality-related problems [ 23 ]. In our study, there was no difference in whether there was a place to consult for sexual problems depending on whether the patient visited the ALS multidisciplinary clinic.…”

Section: Discussionmentioning

confidence: 99%

Investigation of non-motor symptoms in patients with amyotrophic lateral sclerosis

et al. 2022

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Abstract[Objective] Few studies have comprehensively investigated the non-motor symptoms of amyotrophic lateral sclerosis (ALS). We aimed to investigate this aspect of ALS. [Methods] We held a nationwide webinar, titled “ALS Café,” and distributed self-report questionnaires to ALS patients. In addition to the frequency of non-motor symptoms such as fatigue, pain, sleep disorders, defecation disorders, sialorrhea, and sexual problems, we evaluated the quality of life (QoL), ALS Functional Rating Scale-Revised (ALSFRS-R), and Patient Health Questionnaire-9 (PHQ-9). [Results] The average age of the 33 respondents (19 male, 14 female) was 60.8 ± 11.2; 96.7% of respondents had some non-motor symptoms. The median ALSFRS-R was 32.0, and seven (21.2%) of the respondents had a PHQ-9 score of 10 or higher. Fatigue was the most common non-motor symptom (81.8%), followed by pain (60.6%), defecation disorders (57.6%), sleep disorders (48.5%), sialorrhea (48.5%), and sexual problems (24.2%). Fatigue was more frequent in females (P = 0.03). Among the non-motor symptoms, pain was the most common factor affecting QoL, followed by fatigue. More than 90% of ALS patients answered that they had never consulted a physician/counselor about sexual problems. Patients with pain had higher PHQ-9 scores than those without (P = 0.01). There was no correlation between the ALSFRS-R score and QoL and PHQ-9. [Conclusions] Most patients with amyotrophic lateral sclerosis had non-motor symptoms, and fatigue and pain were the most common. We showed that many non-motor symptoms affected QoL without correlating with ALSFRS-R score. Attention should be paid to those even if the motor symptoms of ALS are mild.

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“…ALS patients were found to have problems with their sexual relationship due to impaired sexual function such as decreased libido [34], with studies indicating that ALS had the worst rates of SD when compared with other NLDs [35]. Shahbazi et al [36] reported that although SD affected the QoL in ALS patients, 75% of their clinicians were not familiar with any strategies or interventions to help the patients. This shows the need to further explore sexuality in both ALS men and women.…”

Section: Amyotrophic Lateral Sclerosismentioning

confidence: 99%

Sexual Dysfunction in Neurological Disorders with Special Emphasis on Parkinson’s Disease: Insights from Clinical Studies and Animal Models

Koza,

S. Rajani,

Muralidhara

et al. 2023

Parkinson’s Disease - Animal Models, Current Therapies and Clinical Trials

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Epidemiological studies illustrate that sexual dysfunction (SD) is common among the majority of patients suffering from neurological disorders (NLDs). However, our understanding of the SD in NLDs is in its infancy. Our effort in this review article reveals how the clinical studies illustrate different phenotypes relating to SD in both men and women suffering from NLDs, with special reference to PD, and how the development of animal models will provide a fantastic opportunity to decipher mechanistic insights into the biological and molecular processes of SD, understanding of which is critical to figure out the causes of SD and to develop therapeutic strategies either by targeting molecular players or altering and/or regulating the profiles of involved genetic targets. Specific emphasis is placed on dopamine-dependent and independent mechanism(s) of SD among PD patients, which is important because certain critical dopamine-independent phenotypes are yet to be characterized and understood in order to decipher the comprehensive pathophysiology of PD. Synergic efforts of both clinicians and bench scientists in this critical direction would significantly improve the quality of life of sufferers of NLDs who are already burdened. This knowledge relating to SD will help us to make one more step in reducing the burden of disease.

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Perceptions of sexuality in individuals with Amyotrophic Lateral Sclerosis (ALS) and their treating clinicians

Cited by 5 publications

References 22 publications

Sexuality and intimacy in ALS: systematic literature review and future perspectives

Sexuality and intimacy in ALS: systematic literature review and future perspectives

Investigation of non-motor symptoms in patients with amyotrophic lateral sclerosis

Sexual Dysfunction in Neurological Disorders with Special Emphasis on Parkinson’s Disease: Insights from Clinical Studies and Animal Models

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