Dutch normative data of the sexual distress scale and the body image scale

Quality of Life Research https://doi.org/10.1007/s11136-023-03434-w Dutch normative data of the sexual distress scale and the body image scale Anouk S. Huberts1 · Noëlle J. M. C. Vrancken Peeters2 · Z. L. Rana Kaplan3 · Reinier C. A. van Linschoten3,4,5 · H. Pastoor6 · C. Janneke van der Woude5 · Linetta B. Koppert1,2 Accepted: 28 April 2023 © The Author(s) 2023 Abstract Purpose Sexual health is an important contributing factor for health-related quality of life, but research in this domain is scarce. Moreover, normative data are needed to interpret patient-reported outcome measures on sexual health. The aim of this study was to collect and describe normative scores of the Female Sexual Distress Scale (FSDS) and the Body Image Scale (BIS) from the Dutch population and assess the effect of important demographic and clinical variables on the outcome. As the FSDS is also validated in men, we refer to it as SDS. Method Dutch respondents completed the SDS and BIS between May and August 2022. Sexual distress was defined as a SDS score > 15. Descriptive statistics were calculated to present normative data per age group per gender after post-stratification weighting was applied. Multiple logistic and linear regression analyses were conducted to assess the effect of age, gender, education, relationship status, history of cancer and (psychological) comorbidities on SDS and BIS. Results For the SDS 768 respondents were included with a weighted mean score of 14.41 (SD 10.98). Being female (OR 1.77, 95% CI [1.32; 2.39]), having a low educational level (OR 2.02, CI [1.37; 2.39]) and psychological comorbidities (OR: 4.86, 95% CI [2.17; 10.88]) were associated with sexual distress. For the BIS, 696 respondents were included. Female gender (β: 2.63, 95% CI [2.13; 3.13]), psychological comorbidities (β: 2.45, 95% CI [1.43; 3.47]), higher age (β: −0.07, 95% CI [−0.09; −0.05]), and a high educational level (β:−1.21, CI: −1.79 to −0.64) were associated with the non-disease related questions of the Body Image Scale. Conclusion This study provides age- and gender-dependent normative values for the SDS and the non-disease related questions of the BIS. Sexual distress and body image are influenced by gender, education level, relationship status and psychological comorbidities. Moreover, age is positively associated with Body Image. Keywords Sexual wellbeing · Sexual distress · Body image · Patient reported outcome measure · Value based healthcare * Anouk S. Huberts Introduction 1 Department of Quality and Patientcare, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands 2 Academic Breast Cancer Center, Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, The Netherlands 3 Department of Public Health, Erasmus University Medical Center, Rotterdam, The Netherlands 4 Department of Gastroenterology & Hepatology, Franciscus Gasthuis & Vlietland, Rotterdam, The Netherlands 5 Department of Gastroenterology & Hepatology, Erasmus Medical Center, Rotterdam, The Netherlands 6 Division of Reproductive Medicine, Department of Obstetrics and Gynecology, Erasmus University Medical Center, Rotterdam, The Netherlands Survival rate and life expectancy have improved in numerous diseases. This leads to an increasing number of patients living with long-term consequences of diseases which affect different domains of their health-related quality of life (HRQoL) [1, 2]. Sexual health is an important contributing factor for HRQoL [3, 4], but research in this domain is scarce and mostly focuses on sexual functioning rather than sexual well-being [4–9]. After all, sexual health is not merely the absence of disease, dysfunction or infirmity, but is defined as a state of physical, emotional, mental and social wellbeing in relation to sexuality [10]. Several studies showed that the majority of people who reported difficulties in sexual function report no or 13 Vol.:(0123456789) Quality of Life Research minimal sexual distress [11–13]. Additionally, these studies reported that sexual functioning and sexual distress are related to different risk factors. These finding address the importance of investigating both sexual domains [13–15]. The Female Sexual Distress Scale (FSDS) and Body Image Scale (BIS) are two patient-reported outcome measures which address different aspects of sexual health and could be supplementary to questionnaires about sexual function [16–19]. However, normative scores are needed to interpret these patient-reported outcome measures, to provide context of individual scores in the consultation room, and enable future comparison between people with a specific disease and the general Dutch population. Normative data describes outcomes of a defined population without the specific condition of interest [20]. In this study we aim to collect and describe normative scores of the Female Sexual Distress Scale and the Body Image Scale from the Dutch population and assess the effect of clinical important variables on the outcome. As the FSDS is also validated in men, we refer to it as SDS and will assess the sexual distress in both men and woman. Distribution and population We distributed the validated Dutch translation of the SDS, BIS and additional demographic questions on gender (male, female and non-binary), age, education level, relationship status, (psychological) comorbidities and history of cancer via ‘’Limesurvey’’ via two ways. First, the members of the research team disseminated the hyperlink to friends and family via social media and asked them to distribute it to others, creating a snowballing effect. Second, the hyperlink was distributed via the official LinkedIn and Facebook accounts of the Erasmus University Medical Center. Participants could participate if they were ≥ 18. Informed consent was retrieved after notification of study information. Participants were not compensated and could withdraw at any moment. Missing data was handled on a survey by survey basis, meaning that respondents who finished the SDS but not the BIS were included in the analyses of the SDS but not the BDS. Incomplete questionnaires were used for non-responders analyses. Data was collected between 12-05-2022 and 08-082022. The Dutch Medical Research Act did not apply to this study, which was confirmed by the local Medical Ethics Review Committee (MEC-2022-0154). Methods Patient‑reported outcome measures (PROM) The SDS is a 12-item scale; each question is scored on a 4-point Likert scale. For analyzing all the items must be added, with the maximum score of 48. The sexual distress scale is validated as a linear scale with higher scores indicating greater sexual distress. The value of analyzing separate questions is not validated [18, 21, 22]. The validated cut-off score of ≥ 15 indicates the presence of sexually related personal distress [22]. The SDS asks for topics such as regret, dissatisfaction and frustration with sex life. The B (...truncated)