Discussing sexual health among Flemish patients with Parkinson's disease

Parkinson's disease (PD) can lead to sexual dysfunction. Yet, studies have shown that neurologists do not often discuss possible sexual health consequences with their patients. Thus, in this study, we investigated the communication on sexual health between healthcare workers and PD patients in Flanders, Belgium.

Through an online survey, PD patients were contacted. Sexual dysfunction was measured with the Arizona Sexual Experience Scale (ASEX), stage of PD with the Hoehn and Yahr scale, and self-made questions on the communication between healthcare workers and PD patients.

In total, 100 PD patients responded, of which 23% had possible sexual dysfunction. Of these respondents, 60% had never received any information about possible sexual health consequences. More than half (58%) of the patients felt their neurologist should provide information on possible sexual health consequences, though only 14% had ever received information from their neurologist. Male respondents expressed a greater need for information than female respondents (p = .049), although no difference between both groups in receiving information was found (p = .294). In addition, low to middle educated people generally received more information than higher educated people (p = .018).. The more severe the disease is, as measured by the Hoehn and Yahr scale, the more information a patient receives (p = .012). The most frequently mentioned barriers in discussing sexual health are a lack of initiative by the neurologist (41%) and awkwardness to discuss sexuality (41%).

This study showed that PD patients expect information from neurologists on possible sexual health consequences, but seldom receive information. More attention should be given to training neurologists in discussing sexual health. Table 1 Characteristics of the sample (N = 100) N % Gender  Male 59 59  Female 41 41 Education level  Lower 4 4  Middle 42 42  Higher 54 54 Relationship status  No partner 10 10  Partner 90 90 Stage of Parkinson (Hoehn & Yahr scale)  Stage 0 3 3  Stage 1 36 36  Stage 1.5 12 12  Stage 2 9 9  Stage 2.5 6 6  Stage 3 21 21  Stage 4 9 9  Stage 5 4 4 Time since diagnosis  Less than 1 years ago 10 10  1-2 years 13 13  2-5 years 32 32  5-10 years 29 29  Longer than 20 years 13 13  10-15 years 2 2  15-20 years 1 1 Received information on sexual health consequences from…  Treating neurologist 14 14  GP 9 9  Geriater 0 0  Nurses 2 2  Psychotherapist 3 3  Sexuologist 1 1  Kinesitherapist 2 2  Other 4 4 Who do you think should provide you information on sexual health consequences  Treating neurologist 58 58  GP 43 43  Geriater 3 3  Nurses 6 6  Psychotherapist 23 23  Sexuologist 17 17  Kinesitherapist 3 3  Other 2 2 How would you like to receive information on possible sexual health consequences?  Brochure 38 38  Online (e.g. website) 38 38  Posters in waiting room 3 3  Personal conversation with healthcare worker 51 51  Other 1 1 From what moment do you think possible sexual health consequences of Parkinson's disease should be discussed?  From the moment of diagnosis 52 52  From moment patient indicates he/she experiences problems 33 33  From moment that the neurologist feels it should be discussed 9 9  Should not be discussed 6 6 Need for information on possible sexual health consequences  No need 31 31  A little need 19 19  Some need 21 21  Need 24 24  A lot of need 5 5 How often has healthcare personnel given you information on sexual health consequences  Never 60 60  Seldom 25 25  Sometimes 12 12  Regularly 3 3  At every consultation 0 0 ASEX  No possible sexual dysfunction 77 77  Possible Sexual dysfunction (score equal to or higher than 19) 23 23 How important are sexual activities for you?  Not important 20 20  Slightly important 33 33  Somewhat important 22 22  Important 18 18  Very important 7 7 I avoid sexual contact because of my disease  Agree completely 8 8  Agree 16 16  Agree somewhat 30 30  Disagree 28 28  Completely disagree 18 18 I feel unsatisfied with my sex life due to my disease  Agree completely 16 16  Agree 22 22  Agree somewhat 32 32  Disagree 20 20  Completely disagree 10 10 Mean Standard deviation Age 66.97 8.88 ASEX 16.02 4.53 Table 2 Associations of ASEX, need for information, receiving information ASEX p Need for information p Receiving information p Gender  Male 16.08 0.948 55.31 0.049 48.69 0.294  Female 16.11 44.13 43.38 Education level  Low-middle 15.83 0.068 53.26 0.356 53.41 0.018  High 16.20 48.06 41.49 Need for information and receiving information scores are mean ranks due to non-parametric tests ASEX scores are means Table 3 Correlations between variables ASEX Age Need for information Receiving information Hoehn and Yahr Importance of sex life Avoiding sex Unsatisfied with sex life ASEX -  - 0.04 0.27* 0.07  - 0.09  - 0.12  - 0.10  - 0.23* Age -  - 0.20 0.10 0.41***  - 0.28**  - 0.16 0.08 Need for information - 0.14  - 0.11 0.38***  - 0.13  - 0.46*** Receiving information - 0.22*  - 0.03  - 0.08  - 0.08 Hoehn and Yahr -  - 0.17  - 0.32**  - 0.17 Importance of sex life - 0.24*  - 0.07 Avoiding sex - 0.48*** Unsatisfied with sex life - ^*p < .05 ^**p < .01 ^***p < .001 Table 4 Regression analyses B (S.E.) Exp(B) P Pseudo R² Nagelkerke Pseudo R² Cox & Snell Need for information 0.013 0.19 0.14  Gender  - 1.23 (0.48) 0.29 0.010  Education level  - 0.62 (0.43) 0.54 0.149  Hoehn and Yahr 0.01 (0.11) 1.01 0.925  ASEX 0.10 (0.06) 1.11 0.060 Receiving information 0.047 0.14 0.11  Gender  - 0.53 (0.45) 0.59 0.232  Education level  - 0.61 (0.41) 0.54 0.137  Hoehn and Yahr 0.29 (0.14) 1.33 0.012  ASEX 0.01 (0.05) 1.01 0.788 Table 5 Barriers to discuss sexual health % (that agree with statements) I do not feel comfortable to discuss sexuality with my neurologist 33 I wait until the neurologist begins discussing it 41 My neurologist is either too young or too old 11 My neurologist is of the other gender 26 Reasons that have to do with my faith or attitude towards sexuality 12 I do not have the feeling there is a solution for these problems (with sexual health) 31 My Parkinson related symptoms overshadow my possible sexual health problems 39 It feels awkward to discuss sexual acts like masturbation or discuss buying of sexual aiding tools 41 My family/partner/friends are present during consultation 37 Reasons that have to do with my sexual orientation 11.