Transition competence as an indicator of health outcomes related to transition.

BACKGROUND: Adolescents and young adults (AYAs) with chronic conditions face a transfer, defined as an actual shift from paediatric to adult-oriented health care. Transition competence as the self-perceived knowledge, skills and abilities regarding the transition process was considered extremely useful. AIM: This study was designed to investigate the impact of transition competence before and after the transfer on disease-specific quality of life (QoL) and health care satisfaction of AYAs with diabetes. RESULTS: In total, a sample of N = 90 AYAs with diabetes self-reported their transition competence, diabetes-specific QoL and satisfaction with care. Multiple linear regressions were used to analyse the impact of transition competence on satisfaction with care and QoL. Transition competence positively influenced the outcomes of satisfaction with care and QoL. CONCLUSION: Young adults with diabetes showed higher transition competence scores than adolescents with diabetes.

[The Relationship between Social and Family Structures and Behavioral Problems in Preschool Children]. / Der Zusammenhang von sozialen und familiären Strukturen mit Verhaltensauffälligkeiten bei Vorschulkindern.

BACKGROUND: Behavioral problems in children are indicators of compromised mental health. Their development is influenced by family and social factors, with limited understanding of interactions among family structure, educational status, migration background, and parental employment concerning behavioral problems. These associations were investigated in children between 5-6 years of age. METHODS: Data (n=15,271) were collected between 09/2018 and 08/2019 in the federal state of Schleswig-Holstein as part of school entry examinations. Children's behavioral problems were assessed using the Strengths and Difficulties Questionnaire (SDQ). Statistical analyses included descriptive assessments and the calculation of a bivariate logistic regression model, with SDQ's outcomes "problematic" and "non-problematic" as dependent variables, and social and family factors as independent variables (gender, family structure, number of siblings, language proficiency, migration background, parental education level, parental employment, and sports participation in a sports club). RESULTS: Logistic regression analyses revealed that children living with single parents had a 2.1-fold (odds ratio; OR) higher likelihood [95% confidence interval (CI): 1.7-2.6] of displaying behavioral problems compared to children living with both biological parents. Only children had a 1.4-fold higher likelihood [95% CI: 1.2-1.8] compared to children with one or two siblings. Children with a unilateral migration background exhibited a lower likelihood of behavioral problems [OR: 0.58; 95% CI: 0.38-0.87] than children without a migration background. Children from families with low educational attainment had a 3-fold higher likelihood of behavioral problems [95% CI: 2.3-3.8] compared to those from high educational attainment families. When both parents (or the single parent) were employed at least part-time, there was a lower likelihood of behavioral problems [OR: 0.58; 95% CI: 0.47-0.71] in the child compared to situations where at least one parent was unemployed. CONCLUSIONS: This study identified sociodemographic factors associated with manifestation of behavioral problems. Particularly, single parents, families with lower educational levels and families with at least one unemployed parent should be targeted for intervention.

[The biopsychosocial understanding of health disorders and impairments in children with a focus on developmental neurological relationships]. / Das biopsychosoziale Verständnis von Gesundheitsstörungen und Beeinträchtigungen bei Kindern mit Fokus auf entwicklungsneurologische Zusammenhänge.

The distinction between mental (spiritual and psychological) and physical health disorders is particularly difficult due to the special features of neurobiological development in children and adolescents. In this review article, the basics of developmental neurology are briefly described. On the basis of some congenital or early acquired neurological diseases, it is then shown to what extent mental processes can be impaired in interactions with the social context. Taking these aspects into account plays an important role in child and family-oriented counseling and support. The common occurrence of physical, mental, and psychological development disorders, which is also very variable between individuals and fluctuates over the course of a person's life, requires good interdisciplinary cooperation between conservative and surgical child and adolescent medicine and child and adolescent psychiatry.

[Effects of High Birth Weight on the Development of Preschoolers]. / Auswirkungen eines hohen Geburtsgewichts auf die Entwicklung von Kindern im Vorschulalter.

BACKGROUND: A high birth weight above 4,000 g may lead to risks in the development of affected children. The association is less studied than the effects of very low birth weight and is the subject of this study. METHODS: The retrospective study design used data from school entry surveys in Schleswig-Holstein (Germany) collected in 2014-2017 and included 88,858 children aged 5-6 years. End points examined were language, motor skills, cognition, and behavior; use of support measures; and recommendation for special educational needs. Logistic regression models were used to estimate the association between birth weight and the outcome measures, adjusting for sociodemographic factors. RESULTS: After accounting for sociodemographic factors, high birth weight is not associated with impaired child development, whereas low birth weight emerges as a significant predictor. Across all birth weights, sociodemographic factors explain most of the variance in multivariate models of the influence of birth weight on child development. CONCLUSIONS: Very high birth weight does not justify a general recommendation for support measures. Therefore, individual developmental trajectories should be monitored. Growing up in disadvantaged circumstances may represent a significant risk and should be a reason for early intervention.

[Transition-oriented patient education program for adolescents and young adults with ADHD]. / Transitionsorientierte Patientenschulung bei Adoleszenten und jungen Erwachsenen mit ADHS.

Transition-oriented patient education program for adolescents and young adults with ADHD Abstract. Background: The transition from child- to adult-centered treatment includes numerous challenges in the treatment of chronic disorders. This process can be further complicated by disease-specific characteristics of attention-deficit/hyperactivity disorders (ADHD). This secondary analysis evaluated a transition workshop in individuals with ADHD. Methods: In total, 56 adolescents and young adults with ADHD (age M = 17.3 years, SD = 1.1; 17.9 % female) and their parents were quasi-randomly assigned to a control group (CG, n = 28) or an intervention group (IG, n = 28). The CG received regular medical care, whereas the IG additionally participated in a one-and-a-half-day transition workshop (ModuS-T). Before and 4 weeks after the intervention, transition competence was assessed with the Transition Competence Scale (TKS), patient activation with the Patient Activation Measure 13 for Adolescents (PAM® 13), and satisfaction with care with the Patient Satisfaction Questionnaire (ZUF-8). Results: The IG showed significantly improved transition competence (p ≤ .001) compared to the CG. There was no significant intervention effect in terms of patient activation (p = .194). Overall, the IG was highly satisfied with the workshop. Discussion: To date, transition workshops have been evaluated predominantly in individuals with chronic somatic disorders. This secondary analysis indicates that a generic workshop is also associated with improved transition competence and high satisfaction in individuals with chronic mental disorders. The integration of such approaches into routine care needs to be discussed.

Quality of life and mental health in emerging adults with cerebral palsy compared to the general population.

BACKGROUND: While evidence concerning Quality of Life (QoL) in youth with cerebral palsy (CP) in comparison to the general population has been accumulating, there is a lack of studies exploring differences on a wider range of positive and negative mental health outcomes in emerging adults. METHODS: This binational case control study is part of the SPARCLE cohort study on QoL and participation of youth with CP. QoL (WHOQOL-BREF), depression (PHQ-9), anxiety (GAD-7) and self-efficacy (GSE) were assessed in 198 emerging adults with CP and 593 emerging adults from the general population, matched for country of residence, age and gender. ANCOVAs with impairment and pain as covariates were run. RESULTS: Similar levels of QoL were found in both samples, except for the environmental domain, with better QoL for emerging adults with CP compared to the general population. There were significant descriptive differences regarding depression with worse levels in the CP sample, however, also worse levels of self-efficacy. Pain as a covariate had a significant negative impact on all measures, leading to poorer self-efficacy while worsening depression and anxiety; impairment had a significant worsening impact on physical QoL and self-efficacy only. CONCLUSION: Similar expressions of mental health outcomes in emerging adults with CP and the general population indicate the high adaptive capability of emerging adults with CP.

["I Didn't Think I would be Put under Pressure Like That." Supporting and Inhibiting Factors on Access Paths to Early Prevention Programs from Parents' View]. / "So unter Druck gesetzt zu werden, das hab' ich nicht gedacht." Fördernde und hemmende Einflüsse auf Zugangswege zu den Frühen Hilfen aus Sicht der Eltern.

BACKGROUND: The German early prevention programs called "Frühe Hilfen" are open to all families with children up to 3 years old and focus on families experiencing psychosocial stress and in need of support. Families with strong psychosocial risk factors are less likely to gain access to support programs than families with lower psychosocial risk factors. OBJECTIVE: This study identifies enabling and inhibiting factors for access to early prevention programs. MATERIALS AND METHODS: Qualitative partially structured interviews were carried out with parents (N=17) from families (N=13) who had taken part in psychosocial counseling after a professional had identified support needs and recommended an early prevention program. The interviews were transcribed and interpreted using content analysis according to Mayring. RESULTS AND DISCUSSION: Parents find clear and trustworthy communication during counseling sessions to be conducive to finding access to support programs. A barrier emerges when parents feel put under pressure or do not feel a need for support. Counseling should be offered at different points in time (e. g. pregnancy, puerperium). CONCLUSION: Open, trusting, and judgement-free communication in combination with participative decisionmaking is a promising approach when it comes to parent counseling.

Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population - SPARCLE 3 study protocol.

BACKGROUND: Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. METHODS: The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. DISCUSSION: This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence.

AIM: To examine the evolution of child-parent discrepancy in reporting quality of life (QoL) between childhood and adolescence in children with cerebral palsy (CP) and to investigate potential factors associated with such a discrepancy. METHOD: We used data from the SPARCLE (Study of PARticipation of Children with CP Living in Europe) study, a population-based cohort study of children with CP, aged 8 to 12 years at baseline (in 2004-2005), in nine European centres, who were followed up at the age of 13 to 17 years. The KIDSCREEN-52 Quality of Life measure was used at baseline and follow-up; 354 child-parent dyads out of 500 eligible dyads were followed up (201 males, 153 females). We used intraclass correlation coefficients (ICCs) to examine agreement between parent proxy-reports and self-reported QoL. We used linear regression to examine factors associated with child-parent discrepancy in QoL reporting. RESULTS: Agreement was low to moderate (ICC=0.16-0.48) in childhood and in adolescence across all QoL domains. In four domains (moods and emotions, self-perception, relationship with parents and home life, and social support and peers), the extent of the discrepancy increased significantly between childhood and adolescence. Parenting stress, child pain, and child behaviour problems influenced parent proxy-reports during both childhood and adolescence. INTERPRETATION: The points of view of the child and their parents should be treated as complementary to obtain better knowledge regarding the QoL of children and adolescents with CP.

Early Genital Surgery in Disorders/Differences of Sex Development: Patients' Perspectives.

Controversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence on patient preference is needed to inform decision-making. We conducted a multicentre survey by cross-sectional questionnaire in 14 specialized clinics in six European countries. The sample comprised 459 individuals (≥ 16 years) with a DSD diagnosis, including individuals with congenital adrenal hyperplasia (CAH) (n = 192), XY DSD with prenatal androgen effect (A) (n = 150), and without (nA) (n = 117). Main outcome measures were level of agreement with given statements regarding genital surgery, including clitoris reduction, vaginoplasty, and hypospadias repair. A total of 66% of individuals with CAH and 60% of those with XY DSD-A thought that infancy or childhood were the appropriate age for genital surgery. Females with XY DSD were divided on this issue and tended to prefer vaginoplasty at a later age (XY DSD-A 39%, XY DSD-nA 32%). A total of 47% of males preferred early hypospadias surgery. Only 12% (CAH), 11% (XY DSD-A), and 21% (XY DSD-nA) thought they would have been better off without any surgery in childhood or adolescence. Individuals who had early genital surgery were more likely to approve of it. Outcome data failed to support a general moratorium on early elective genital surgery. Participant perspectives varied considerably by diagnostic category, gender, history of surgery, and contact with support groups. Case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake.Trial registration: German Clinical Trials Register DRKS00006072.

["I Think it is Important in Many Aspects in Life" - Young Adults' Perception of Participation]. / "Ich finde, das ist halt in vielen Punkten im Leben wichtig" ­ Subjektive Vorstellungen junger Erwachsener von Teilhabe.

PURPOSE: This study explores young adults' lay perception of participation. It focuses on the definition of the concept and the life areas in which the target group views it as important to take part in. METHODS: In guided group interviews (N=6), 20 young adults with and without disabilities were surveyed about their perception of participation. To also include people with more severe disabilities, proxy interviews (N=3) were conducted. The data of the interview were analyzed via qualitative content analysis based on Mayring. RESULTS: Participation is understood as being multifaceted and individually different. Six aspects of participation definition could be detected: togetherness; social inclusion/participation in society; open-mindedness/interest; equal opportunities/equal treatment; freedom of choice/autonomy; to have a voice. Besides that, seven areas of participation were mentioned as important for young adults: social environment; work/education; leisure; media; mobility; politics/finances; self-administration. CONCLUSION: Within young adults' complex perception of participation, social aspects are particularly important, besides equal rights and autonomy. Participation in sexuality and new media is given a crucial value, which is why these topics should be given more attention to. Life areas in which participation is described as relevant can vary depending on the interests of the individual. This demonstrates the subjective character of the concept, and the importance to consider the perception and preference of a person or a group.

[Sustainable Ensuring of Children's and Adolescent Health: More Effectiveness through a National Public Health Strategy]. / Nachhaltige Sicherung der Kinder- und Jugendgesundheit in der Kommune. Mehr Wirksamkeit durch eine nationale Public-Health-Strategie.

What advice should be given to a state that wants to increase general prosperity, promote the economy universally and at the same time fight poverty and ensure greater equality of opportunity? The 2018 Nurturing Care Framework of WHO and Unicef provides the simple answer: "A sustainable and comprehensive investment in early childhood". Implementation of the recommendation mentioned above of "Health in all Policies (HiaP)" was at the centre of the discussions of the Working Group 3 "Ensuring Child and Adolescent Health in Local Communities" of the 3rd Future Forum Public Health 2019. Around 30 people from various fields of action in health, social and political sciences, the public health service, NGOs, universities and professional associations participated in these discussions on a future public health strategy for Germany.

Voice dissatisfaction in individuals with a disorder of sex development.

OBJECTIVE: Changes of sex hormone levels in disorders of sex development (DSD) can affect the body, including the vocal folds, during and after foetal development. The voice is a gender characteristic that may also be affected. There is a lack of knowledge on voice alteration in DSD. To explore this in different forms of DSD, we describe the prevalence of voice alterations and investigate patient satisfaction with voice. DESIGN: The study is part of dsd-LIFE, a multicentre cross-sectional clinical evaluation project assessing the long-term outcomes of surgical, hormonal and psychological interventions in individuals with DSD. PATIENTS: The study included 1040 individuals with different forms of DSD, that is Turner and Klinefelter syndromes, different degrees of gonadal dysgenesis and 46 XY DSD. Participants were recruited through patient advocacy groups and health care. MEASUREMENTS: Satisfaction with voice, Adam's apple, if patient's self-identified gender was mistaken on the phone leading to distress. RESULTS: A vast majority of the participants with DSD (between 58.3% to 82% in various groups) were not satisfied with their voice, and approximately 15% (n = 147) were mistaken on the phone in accordance with self-identified gender. For 102 participants, this caused distress. CONCLUSIONS: We have identified that voice problems are a cause of distress in all forms of DSD. This result needs to be confirmed and compared with controls. We recommend that evaluation of the voice should be included in future international guidelines for management of DSD.

Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries.

OBJECTIVE: The aim of the study was to evaluate psychiatric symptoms among 1022 persons with various disorders of sex development (DSDs). METHODS: The study was a European multicenter cross-sectional clinical evaluation in six countries. The mean (SD) age of participants was 32.1 (13.4) years. The cohort consisted of 325 individuals with Turner syndrome, 219 individuals with Klinefelter syndrome (KS), female individuals with various XY-DSD conditions (107 with and 67 without androgenization), 87 male individuals with XY-DSD conditions, and 221 female individuals with congenital adrenal hyperplasia. The Hospital Anxiety and Depression Scale, the Short Autism Spectrum Quotient, the Adult Attention-Deficit/Hyperactivity Disorder Self-Report Scale, and self-reported mental health history were used to assess psychiatric symptoms. RESULTS: Across the six DSD diagnostic groups, clinical cutoff symptom scores were reached in 19.5% of participants for anxiety, in 7.1% for depression, in 4.1% for attention-deficit/hyperactivity disorder, and in 9.1% for autism. The mean depression and anxiety scores were higher compared with population norms in men with KS and men with XY-DSD. Compared with participants with other DSD conditions, men with KS reported significantly more mental health symptoms. Self-esteem, satisfaction with care, body dissatisfaction, and experiences of shame were associated with psychiatric symptoms in many DSD conditions. CONCLUSIONS: A substantial minority of adults with DSD, with KS in particular, experience psychiatric morbidity. Across DSD conditions, adults may share feelings of shame. Developing a positive self-esteem and body image may be challenging. Multidisciplinary DSD care that involves specialized mental health support can be of important value. TRIAL REGISTRATION: German Clinical Trials Register DRKS00006072.

Sexuality in Adults with Differences/Disorders of Sex Development (DSD): Findings from the dsd-LIFE Study.

For various reasons, sexuality of individuals with differences/disorders of sex development (DSD) may be affected. The aim of the study was to describe sexual activity, satisfaction with sex life, satisfaction with genital function, and sexual problems in people with different DSD conditions. Data were collected from 1,040 participants in Europe. Many people with a variety of DSD conditions do not appear to be satisfied with their sex life, experience a variety of sexual problems, and are less sexually active than the general population; therefore sexuality should be explicitly addressed in the care of people with DSD.

Evaluation of a generic patient education program in children with different chronic conditions.

For frequent pediatric chronic conditions, especially less common chronic conditions patient education programs are missing. A recently developed modular patient education approach (ModuS) combines disease-specific modules with generic psychosocial topics. ModuS was associated with increased disease-specific knowledge and improvements in families' well-being in children with asthma. In this study we tested if new developed ModuS programs for seven, mostly less common, chronic conditions show comparable program-associated effects. ModuS education programs were offered to the affected child and its parents. Disease-specific knowledge, children's health-related quality of life, life satisfaction and condition-specific burden were measured before, directly following and 6 weeks after participation in the program. The results were compared with families who received a ModuS asthma program. One hundred and sixty-eight children participated. Families were highly satisfied with the programs. Program participation was associated with increased families' knowledge, children`s self-reported health-related quality of life and reduced condition-specific burden. The results were comparable with the results of 230 families who participated in a ModuS asthma program. The ModuS approach allowed the development of patient education programs for children with a variety of chronic conditions. Therefore, ModuS closed an important healthcare gap.

[Impact of Daycare Center Attendance on Children's Development]. / Einfluss des Besuchs einer Kindertagesstätte (Kita) auf den Entwicklungsstand bei Vorschulkindern.

BACKGROUND: The number of preschool places outside the family for young children has considerably increased in recent years in Germany. The study investigates how attendance of a preschool affects children's development taking sociodemographic factors into account. METHODS: We used data from the school-entry examinations in Schleswig-Holstein collected in 2014-2015 including 21,272 children aged 5-6 years. We investigated endpoints relevant for school entry, sociodemographic data as well as the number of years of preschool attendance. RESULTS: Low parental educational level, migration biography of both parents, large number of siblings and growing up with a single parent were associated with poorer outcomes (p<0.01). Logistic regressions showed (Odds-ratios [95%-confidence interval]): Attendance improved motor (0.84 [0.79-0.9]), cognitive (0.7 [0.66-0.73]) and speech and language development (0.91 [0.86-0.96]), competence in German (0.42 [0.35-0.5]) and reduced the need for special education (0.58 [0.54-0.64]) when sociodemographic factors had been taken into account. We did not find an association with the prevalence of overweight and obesity. CONCLUSIONS: Psychomotor development in 5-6-year-old children is positively influenced by preschool care attendance. Children growing up in vulnerable families benefit the most. Therefore, intervention programs in kindergarten should be expanded.

Hormone therapy and patient satisfaction with treatment, in a large cohort of diverse disorders of sex development.

OBJECTIVES: To describe and investigate the hormone treatments in individuals with different forms of disorders of sex development (DSD) and the patients' own views on their treatment. DESIGN: Multicentre cross-sectional clinical evaluation, dsd-LIFE in 6 European countries from February 2014 to September 2015. PARTICIPANTS: A total of 1040 adolescents and adults (≥16 years) with different DSD conditions. MAIN OUTCOMES MEASURES: Hormone replacement, information received and patient satisfaction. RESULTS: Included were women with Turner syndrome (301), 46,XX GD (n = 20), and women with 45,X/46XY (n = 24). Individuals with Klinefelter syndrome (n = 218), 46,XX males (n = 6), individuals with different forms of 46,XY DSD (n = 243): 46,XY DSD conditions (n = 222), men with 45,X/46XY (n = 21) 46,XX CAH, (n = 226). Oestrogen ± progestin was used by 306 (81%) individuals, 72 (19%) received ethinylestradiol and 198 had testosterone treatment. The overall adherence was good, with 10% of women with oestrogen and 5% of those on testosterone had stopped the medication despite 20% reporting dissatisfaction with the treatment, mostly because of psychological side effects. Glucocorticoid replacement in patients with CAH was very seldom stopped. More than 75% were satisfied with the information about the treatment, but the satisfaction with information about treatment options and side effects was lower. CONCLUSIONS: More than 50% in the total cohort had hormone replacement. Although adherence was generally good, this study shows that hormone replacement therapy may be improved. This may be achieved by better individualization of the treatment and by providing specific information to patients regarding both long-term and short-term hormonal effects and side effects.

Gender Dysphoria and Gender Change in Disorders of Sex Development/Intersex Conditions: Results From the dsd-LIFE Study.

BACKGROUND: Information on the psychosexual outcome of individuals with disorders of sex development (DSDs) and intersex conditions is of great importance for sex assignment at birth of newborns with DSD. AIM: To assess gender change and gender dysphoria in a large sample of individuals with different DSDs. METHODS: A cross-sectional study was conducted in 14 European centers with 1,040 participants (717 female-identifying and 311 male-identifying persons and 12 persons identifying with another gender) with different forms of DSD. The cohort (mean age = 32.36 years, SD = 13.57) was divided into 6 major subgroups: women with 45,X DSD and variants (Turner syndrome; n = 325), men with 47,XXY DSD and variants (Klinefelter syndrome; n = 219), women with XY DSD without androgen effects (n = 107) and with androgen effects (n = 63), men with XY DSD (n = 87), and women with 46,XX congenital adrenal hyperplasia (n = 221). Data on psychosexual outcome were gathered by medical interviews and questionnaires. OUTCOMES: Gender change and gender dysphoria. RESULTS: Although gender changes were reported by 5% of participants, only in 1% (3% if those with Klinefelter and Turner syndromes-conditions in which gender issues are not prominent-are excluded) did the gender change take place after puberty and was likely initiated by the patient. 39 participants (4%) reported gender variance: between male and female, a gender other than male or female, or gender queer, alternating gender roles, or a gender expression that differed from the reported gender. This group had lower self-esteem and more anxiety and depression than the other participants. CLINICAL IMPLICATIONS: Clinicians should be aware of and sensitive to the possibility that their patients with DSD not only might have transgender feelings and a desire to change gender, but also identify as different from male or female. The complexity of their feelings might require counseling for some patients. STRENGTHS AND LIMITATIONS: The study is unique in the large number of participants from many different clinics, with sizable numbers in most subgroups, and in the large number of aspects that were measured. However, the very broadness of the study made it impossible to focus in detail on gender issues. Also, there is a need for instruments specifically measuring gender dysphoria in individuals with DSD that take non-binary genders into account. CONCLUSION: To make appropriate gender care possible for people with DSD, the gender-normative and gender-variant development of children with DSD should be studied in longitudinal studies. Kreukels BPC, Köhler B, Nordenström A, et al. Gender Dysphoria and Gender Change in Disorders of Sex Development/Intersex Conditions: Results From the dsd-LIFE Study. J Sex Med 2018;15:777-785.

Multicentre cross-sectional clinical evaluation study about quality of life in adults with disorders/differences of sex development (DSD) compared to country specific reference populations (dsd-LIFE).

BACKGROUND: Previous studies in quality of life (QOL) in individuals with disorders/differences of sex development (DSD) have been restricted to subpopulations of the condition. We describe QOL in adult persons with DSD compared to country specific references and assess the impact of diagnosis. METHODS: The multicentre cross-sectional clinical evaluation (dsd-LIFE) took place in 14 specialized clinics in six European countries. Adolescents (≥16 years) and adults having a DSD condition were included from 02/2014 to 09/2015. The main outcome QOL was measured by the WHOQOL-BREF (domains of physical health, psychological, social relationships, and environment). QOL was compared to country specific reference populations by using unpaired t-tests. Linear regression models explained the additional variance of the diagnosis on QOL. RESULTS: Three hundred one individuals with Turner Syndrome, 219 with Klinefelter Syndrome (including XYY), 226 with 46,XX CAH and 294 with rare DSD conditions (gonadal dysgenesis, androgen insensitivity syndrome, severe hypospadias, and androgen synthesis errors or other diagnosis) took part. Compared to healthy European populations, QOL was similar in psychological, slightly worse in physical health, and slightly better in environment. In social relationships, QOL was significantly poorer compared to healthy and non-healthy reference populations. In linear regression models health status was the most important predictor of QOL; additional variance was explained by feelings about household's income in all domains, and the relationship status in social relationships. Diagnosis explained nearly no additional variance. CONCLUSIONS: Except for social relationships, most people with DSD adapt well to their life circumstances and report a good QOL. Not diagnosis, but the individual's health status is much more important than previously thought. Therefore care for people with DSD should focus more on chronic physical or mental health problems both related and unrelated to the diagnosis itself. TRIAL REGISTRATION: German Clinical Trials Register DRKS00006072 .