Symptom management in MS: enquiring about sexual function in the outpatient clinic – an audit

By Dr Anaïs Thouin, ST7 Neurology, Royal Victoria Infirmary, Newcastle upon Tyne


Sexual dysfunction in MS is common

  • 40-80% men and women with MS
    • 12-45% of general population depending on definitions
  • main features in women and men with MS:
    • Women


      Anorgasmia/hyporgasmiaImpotence/erectile dysfunction
      Decreased vaginal lubricationEjaculatory dysfunction
      Reduced libidoReduced libido
  • determined by interplay of individual, lifestyle and disease characteristics (Marck et al., 2016), including:
    • age, years of education, employment status
    • lesion load and location
    • fatigue
    • depression
      • NB general population with depression has 50-70% risk of SD
    • anti-depressant use
      • NB 30-70% of those treated with antidepressants have treatment-associated SD
    • under-recognised
      • 73% of pts with MS think sexual issues are of great importance in their present life (similar to chronic disease controls and healthy controls (Zorzon et al., 1999))
      • Up to 68% of patients with SD and MS wanted to tackle the issue and be interviewed about it (Bronner et al., 2010)
      • only 2-7% had discussed these issues with a doctor (Zorzon et al., 1999; Lew-Starowicz and Rola, 2013), and more specifically 94-98% had never been asked about sexual function by a health professional (Bronner et al., 2010; Lew-Starowicz and Rola, 2013).
    • effect on quality of life
      • sexual dysfunction accounts for most of the variance on the mental health component of a health related QoL scale, meaning that it has a detrimental impact on the mental health aspects of HrQoL (Schairer et al., 2013)
      • The question “How satisfied are you with your sexual life?” obtained the lowest score of all questions in all domains of a questionnaire adapted from the WHO QoL questionnaire. The respondents were 88 persons with MS who responded to the survey posted on the MS Trust website as part of a previous project presented at MS Masterclass (Review of QoL of UK MS patients, David Choluj, Royal Hospital for Neurodisability).
    • NICE recommends enquiring about sexual function as part of a comprehensive yearly review for people with MS to be carried out by a healthcare professional with expertise in MS
      • The annual review is to be tailored to the needs of the person
      • The list is suggested as an aide-mémoire rather than a rigid list to be used as part of a structured assessment, as this
        • May not address a patient’s needs
        • Patient fear that they are expected to develop all the problems on the list
      • Patients reporting issues within these categories should be referred to the MS MDT/other appropriate teams for management

MS symptoms

  • mobility and balance including falls
  • need for mobility aids including wheelchair assessment
  • use of arms and hands
  • muscle spasms and stiffness
  • bladder, bowel and sexual function
  • sensory symptoms and pain
  • speech and swallowing
  • vision
  • cognitive symptoms
  • fatigue
  • depression and anxiety
  • sleep
  • respiratory function.

MS disease course

  • relapses in last year.

General health

  • weight
  • smoking, alcohol and recreational drugs
  • exercise
  • access to routine health screening and contraception
  • care of other chronic conditions.

Social activity and participation

  • family and social circumstances
  • driving and access to transport
  • employment
  • access to daily activities and leisure.

Care and Carers

  • personal care needs
  • social care needs
  • access to adaptations and equipment at home.


  • to determine if the MS service at Newcastle enquires about sexual dysfunction in patients with MS and refers appropriately
  • To suggest strategies to increase enquiry into sexual dysfunction, and thereby promote improved access to information that may improve QoL in our patients


  • MS patients were identified via an MS OP report generated by the MS administrator
    • Listing consecutive review patients seen in MS follow-up clinics in 2018
    • New patients excluded as other aspects of care likely to take precedence at that stage
  • All MS team (MS consultants, nurses, and neurorehabilitation team) clinic letters in 3 year period (January 2015-January 2018) prior to last appointment were accessed using e-record and reviewed for mention of discussion of sexual function
  • Other relevant information also noted: discussion of urinary and bowel symptoms and their management, antidepressant use, EDSS, DMT use, presence of spinal symptoms

Audit standard and criteria:


Bladder, bowel and sexual function should be assessed as part of a yearly comprehensive review of all aspects of the care of all people with MS, conducted by a healthcare professional with expertise in MS.

  • NICE recognises that the consultation needs to be flexible and patient-centred and that not all items listed in the recommendations are relevant to all patients


Optimum standard to be decided – perhaps 50% of people with MS seen in yearly review clinics in the audit period (January 2015-January 2018) should have had the opportunity to discuss sexual function with a healthcare professional with expertise in MS on one occasion in the 3-year period. This takes into account that:

  • SD may not need to be addressed every year
  • May not be relevant/appropriate for all patients


  • 30 sets of notes reviewed – patients belonging to three consultants last seen in January 2018.


  • 22F (73%) and 8M (27%), mean age 46.8 y ±12y (same for both sexes)
  • 20 RRMS (82% of female patients and 25% of male patients); 10 SPMS or PPMS
  • 25 had documented spinal involvement (87.5% of male patients and 73% of female patients) and in one male it was not possible to infer from the available letters if there was spinal cord involvement.
  • EDSS: data not fully collected but so far median 5.5 range 0-7
  • Total consultation: 152 – 1 inpatient event excluded: 151
    • 1 – >10/patient (one patient had >20 consultations due to the occurrence of IRIS following PML in the period preceding the audit period
    • 91 consultations were doctor-led (75% consultants, 25% Specialist Registrar)
    • 60 were nurse-led

Symptom management:

  • enquiry into sexual function was documented in 1 patient in one consultation (doctor-led (SpR)), that is in 0.7% of consultations and 3.3% of patients
    • no intervention was advised based on this enquiry
    • it was unclear whether the discussion was initiated by the doctor or the patient
  • enquiry into bladder symptoms was documented in 50% of consultations (63% doctor-led, 32% nurse-led)
    • further intervention was always offered (advice, referral to continence nurse)
  • enquiry into bowel symptoms was documented in 20% of all consultations (22% doctor-led and 17% nurse-led)
    • further intervention was offered in 93.3% of these

Additional factors:

  • antidepressant use was documented as follows:
    • taking an antidepressant: 30% of patients (SSRI 27% of patients, combination SSRI and TCA 3%)
    • not taking antidepressant medication: 37%
      • these are patients with medication lists documented
    • no medication list recorded: 33%
    • note this means that 62% of letters did not include a medication list


Bladder and bowel symptoms

  • These often associate with SD and discussing these also provides an opportunity to discuss SD
  • Enquiry into bladder and bowel symptoms was documented in only 63% and 22% of doctor-led yearly review consultations respectively.
    • This is likely to be an underestimate of the true discussion rates as clinicians vary in the detail they include in letters
    • Rates even lower in nurse-led clinics but it was difficult to determine which nurse appointments were drug-monitoring appointments where symptom discussion would have been minimal
  • This was not part of the formal audit and no standard of performance was set. The data were collected to give context to the SD results

Sexual function

  • sexual function was hardly ever assessed/discussed in the sample of patients whose records were reviewed. Indeed only one patient was given the opportunity to discuss sexual function in a yearly medical review appointment.
  • This is despite most of the patients having risk factors for sexual dysfunction (spinal cord involvement in 25/30, antidepressant use in at least 30%, and some consultations having the explicit aim to discuss mood problems)
  • Studies have demonstrated that patients with MS think sexual function is of great importance in their life and most would welcome the opportunity to discuss their symptoms in relation to this. SD is very common in this population.
  • Depression and sexual function impact each other in bidirectional ways, with depression causing high rates of sexual dysfunction and vice-versa. Antidepressants themselves can cause sexual dysfunction and should therefore be used judiciously. This was never discussed with patients whose notes were reviewed in this audit.
  • Clinicians and other healthcare professionals should therefore be encouraged to enquire about problems with sexual function more frequently
  • My aims now are to:
  1. Identify barriers to discussion about SD – I plan on distributing a short questionnaire exploring potential reasons:
    1. Embarrassment
    2. Time
    3. Lack of confidence with advice
    4. Lack of resources
  2. Is there a simple intervention that would allow the discussion to take place without relying on either doctor or patient to have to bring it up specifically?
    1. Could patients be given a list of common issues on booking in and they could tick those they wish to discuss in clinic
    2. Could we have a three-yearly rotation of themes for the MS service, so that every third year for example the theme is sexuality in MS, encouraging all clinicians/HCPs to enquire about SD at each patient encounter. The themes could be advertised in the outpatient waiting area, on the hospital documentation etc to indicate to patients our willingness to discuss such issues and encourage them to broach the subject
  3. Determine who is best placed to discuss SD and offer intervention
    1. Doctor vs nurse? Would patients have a preference?
    2. Is this something the nurses could screen for? Is there capacity for that within their appointment system?
  4. Put together advice sheet including list of available resources
    1. MS Trust info
    2. SARC at WGP
    3. Simple advice from literature
    4. Liaise with SARC re practical advice/what should we do before referring
  5. Re-audit
    1. Consider inclusion of patient satisfaction measure


Bronner, G., Elran, E., Golomb, J. and Korczyn, A. D. (2010) ‘Female sexuality in multiple sclerosis: the multidimensional nature of the problem and the intervention’, Acta Neurologica Scandinavica, 121(5), pp. 289-301.

Lew-Starowicz, M. and Rola, R. (2013) ‘Prevalence of Sexual Dysfunctions Among Women with Multiple Sclerosis’, Sexuality and Disability, 31(2), pp. 141-153.

Marck, C. H., Jelinek, P. L., Weiland, T. J., Hocking, J. S., De Livera, A. M., Taylor, K. L., Neate, S. L., Pereira, N. G. and Jelinek, G. A. (2016) ‘Sexual function in multiple sclerosis and associations with demographic, disease and lifestyle characteristics: an international cross-sectional study’, BMC Neurology, 16, p. 210.

Schairer, L. C., Foley, F. W., Zemon, V., Tyry, T., Campagnolo, D., Marrie, R. A., Gromisch, E. S. and Schairer, D. (2013) ‘The impact of sexual dysfunction on health-related quality of life in people with multiple sclerosis’, Multiple Sclerosis Journal, 20(5), pp. 610-616.

Zorzon, M., Zivadinov, R., Bosco, A., Bragadin, L. M., Moretti, R., Bonfigli, L., Morassi, P., Iona, L. G. and Cazzato, G. (1999) ‘Sexual dysfunction in multiple sclerosis: a case-control study. I. Frequency and comparison of groups’, Mult Scler, 5(6), pp. 418-27.

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