Roel Van Overmeire1, Lara Vesentini2, Stephanie Vanclooster2, Johan Bilsen2. 1. Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Brussels, Belgium. roel.van.overmeire@vub.be. 2. Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Brussels, Belgium.
Abstract
PURPOSE: 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. METHODS: 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. RESULTS: 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%). CONCLUSION: 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.
PURPOSE: 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. METHODS: 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. RESULTS: 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%). CONCLUSION: 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.
Authors: Maximilian Christian Schielein; Linda Tizek; Barbara Schuster; Stefanie Ziehfreund; Tilo Biedermann; Alexander Zink Journal: Acta Derm Venereol Date: 2020-05-28 Impact factor: 3.875