A day in the life: psychological impact on emergency responders during the 22 March 2016 terrorist attacks.

Introduction: Terrorist attacks can cause severe long-term mental health issues that need treatment. However, in the case of emergency responders, research is often vague on the type of stressors that emergency responders encounter. For example, in addition to the threat that they work under, studies have shown that ill-preparation adds to the stress experienced by emergency responders. However, few studies have looked into the experience of emergency responders. In this study, we looked at the experience of emergency responders during the 22 March 2016 terrorist attacks in Belgium. Methods: We used a qualitative design, in which we interviewed different types of emergency responders. Police officers, nurses, soldiers, firefighters, and Red Cross volunteers were included. Interviews were coded by two researchers and analyzed using a thematic approach. Results: Four large themes were developed: constant threat and chaos, frustrations with lack of preparedness and training, ethical decisions, and debriefings. In addition, although emergency responders encountered constant threat, they often felt that they were ill-prepared for such attacks. One specific example was their lack of training in tourniquet usage. Furthermore, in a disaster setting, the emergency responders had to make life-and-death decisions for which they were not always prepared. Finally, debriefings were conducted in the aftermath of the attacks. Whereas most were perceived as positive, the debriefings among police officers were viewed as insufficient. Conclusions: Emergency responding to terrorist attacks has many different dimensions of events that can cause stress. Our study revealed that preparation is key, not only in terms of material but also in terms of ethics and debriefings.

Discussing sexual health among Flemish patients with Parkinson's disease.

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.

Development and Feasibility of the Self-Report Quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist (TAND-SQ).

BACKGROUND: Tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) are often present but underidentified and undertreated in individuals with tuberous sclerosis complex (TSC). The clinician-completed TAND-Lifetime Checklist (TAND-L) was developed to address this identification and treatment gap. Stakeholder engagement identified the need for a TAND Checklist that can (1) be completed by caregivers or individuals with TSC and (2) quantify TAND difficulties. The aim of this study was to develop a self-report quantified TAND Checklist (TAND-SQ) and conduct feasibility and acceptability testing. METHODS: This aim was addressed in three phases: (1) development of the TAND-SQ Checklist, (2) feasibility and acceptability testing of the "near-final" TAND-SQ Checklist, and (3) preparation of the final TAND-SQ Checklist. Participants included 23 technical experts from the TAND consortium in all phases and 58 lived experts (caregivers and individuals with TSC) in phase 2. All participants completed a TAND-SQ Checklist and a checklist feedback form. RESULTS: Phase 1 additions to the TAND-SQ, when compared with the TAND-L, included four new items and a quantification rating. Phase 2 showed high ratings for the "near-final" TAND-SQ Checklist on comprehensiveness, clarity, ease of use, and overall acceptability. In phase 3, questions on strengths, strategies, and a TAND Cluster Profile were added. CONCLUSION: The TAND-SQ Checklist is presented here for use by individuals with TSC and their caregivers. The next steps as part of the TANDem project include internal and external validation of the checklist and linking of TAND Cluster Profiles generated from the checklist to evidence-informed consensus recommendations within a smartphone application.

International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND).

BACKGROUND: Tuberous sclerosis complex (TSC) is associated with a wide range of physical manifestations for which international clinical recommendations for diagnosis and management have been established. TSC is, however, also associated with a wide range of TSC-Associated Neuropsychiatric Disorders (TAND) that are typically under-identified and under-treated yet associated with a profound burden of disease. The contemporary evidence base for the identification and treatment of TAND is much more limited and, to date, consensus recommendations for the diagnosis and management of TAND have also been limited and non-specific. METHODS: The TANDem project was launched with an international, interdisciplinary, and participatory consortium of 24 individuals, including TSC family representatives, from all World Health Organization (WHO) regions but one. One of the aims of the TANDem project was to generate consensus recommendations for the identification and treatment of TAND. At the time of this project, no internationally adopted standard methodology and methodological checklists existed for the generation of clinical practice recommendations. We therefore developed our own systematic procedure for evidence review and consensus-building to generate evidence-informed consensus recommendations of relevance to the global TSC community. RESULTS: At the heart of the consensus recommendations are ten core principles surrounded by cluster-specific recommendations for each of the seven natural TAND clusters identified in the literature (autism-like, dysregulated behavior, eat/sleep, mood/anxiety, neuropsychological, overactive/impulsive, and scholastic) and a set of wraparound psychosocial cluster recommendations. The overarching recommendation is to "screen" for TAND at least annually, to "act" using appropriate next steps for evaluation and treatment, and to "repeat" the process to ensure early identification and early intervention with the most appropriate biological, psychological, and social evidence-informed approaches to support individuals with TSC and their families. CONCLUSIONS: The consensus recommendations should provide a systematic framework to approach the identification and treatment of TAND for health, educational, social care teams and families who live with TSC. To ensure global dissemination and implementation of these recommendations, partnerships with the international TSC community will be important. One of these steps will include the generation of a "TAND toolkit" of "what to seek" and "what to do" when difficulties are identified in TAND clusters.

Body Image, Medication Use, and Mental Health among Women with Fibromyalgia in Flanders, Belgium.

Fibromyalgia (FM) is a chronic illness that does not have clear physical consequences, yet research shows that FM patients often have a low body image. An online cross-sectional study was conducted in Flanders, Belgium, among FM women who are connected to the Flemish League for fibromyalgia patients. An adjusted Body Image Scale (BIS) was used to assess body image, the General Health Questionnaire-12 (GHQ-12) was used for mental health, and the Visual Analogue Scale Fibromyalgia Impact Questionnaire (VASFIQ) was used for FM symptoms. Medication use was assessed by using a 4-point Likert scale. Time since diagnosis and age was assessed. A total of 103 women with FM responded. Linear regression showed that BIS was best predicted in a model by using VASFIQ, GHQ-12, time since diagnosis, and sleep medication, wherein only the GHQ-12 was significant as a variable (B = 0.292; p = 0.009). This model explained 19.3% of the variance. The role of sleep medication use disappeared when controlling for mental health. Mental health was more clearly associated with body image than medication use, or even fibromyalgia symptoms. Thus, having negative mental health is associated with a negative body image. In order to improve the body image of FM patients, symptom control alone is not enough; improving mental health is equally important.

Sexual Desire, Depressive Symptoms and Medication Use Among Women With Fibromyalgia in Flanders.

BACKGROUND: Fibromyalgia (FM) is associated with sexual dysfunction, though much less is known about the sexual desire, and especially dyadic and solitary sexual desire, among women with fibromyalgia. AIM: To investigate on the one hand the global sexual desire, the dyadic sexual and solitary sexual desire, and on the other hand the association with depressive symptoms, fibromyalgia symptoms and medication use among women with fibromyalgia in Flanders, Belgium. METHODS: An online survey was spread through the Flemish league for Fibromyalgia Patients to be completed by women with fibromyalgia. The sexual desire inventory-2 (SDI-2) was used to measure sexual desire (global, dyadic, solitary), the VASFIQ for fibromyalgia symptoms, and the PHQ-2 for depressive symptoms, while also including questions on demographic factors (time since FM, age) and medication usage (antidepressants, pain medication, sleeping medication). MAIN OUTCOME MEASURE: Global sexual desire, dyadic sexual desire and solitary sexual desire were studied in relation to depressive symptoms, medication use and fibromyalgia symptoms. RESULTS: One hundred and three women with FM answered the survey. Depressive symptoms were significantly associated with a lower global, dyadic and solitary sexual desire, as was the use of antidepressant medication. The association between solitary sexual desire and depressive symptoms disappeared when controlled for antidepressant medication. Age, fibromyalgia symptoms nor time since diagnosis were significantly associated with any form of sexual desire. CONCLUSION: Depressive symptoms and antidepressant medication, and not fibromyalgia symptoms, were associated with decreased sexual desire of women with FM. As antidepressant medication and depressive symptoms are associated with a decreased sexual desire, more attention should be paid towards the mental health issues associated with fibromyalgia, as well as the prescription of antidepressant medication. This study is the first to investigate sexual desire among women with fibromyalgia in Flanders, and one of the few internationally to have done so. It is limited by its cross-sectional design, and for not providing information on men with FM. Van Overmeire R, Vesentini L, Vanclooster S, et al. Sexual Desire, Depressive Symptoms and Medication Use Among Women With Fibromyalgia in Flanders. Sex Med 2022;10:100457.

The research landscape of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND)-a comprehensive scoping review.

BACKGROUND: Tuberous sclerosis complex (TSC)-associated neuropsychiatric disorders (TAND) is an umbrella term for the behavioural, psychiatric, intellectual, academic, neuropsychological and psychosocial manifestations of TSC. Although TAND affects 90% of individuals with TSC during their lifetime, these manifestations are relatively under-assessed, under-treated and under-researched. We performed a comprehensive scoping review of all TAND research to date (a) to describe the existing TAND research landscape and (b) to identify knowledge gaps to guide future TAND research. METHODS: The study was conducted in accordance with stages outlined within the Arksey and O'Malley scoping review framework. Ten research questions relating to study characteristics, research design and research content of TAND levels and clusters were examined. RESULTS: Of the 2841 returned searches, 230 articles published between 1987 and 2020 were included (animal studies = 30, case studies = 47, cohort studies = 153), with more than half published since the term TAND was coined in 2012 (118/230; 51%). Cohort studies largely involved children and/or adolescents (63%) as opposed to older adults (16%). Studies were represented across 341 individual research sites from 45 countries, the majority from the USA (89/341; 26%) and the UK (50/341; 15%). Only 48 research sites (14%) were within low-middle income countries (LMICs). Animal studies and case studies were of relatively high/high quality, but cohort studies showed significant variability. Of the 153 cohort studies, only 16 (10%) included interventions. None of these were non-pharmacological, and only 13 employed remote methodologies (e.g. telephone interviews, online surveys). Of all TAND clusters, the autism spectrum disorder-like cluster was the most widely researched (138/230; 60%) and the scholastic cluster the least (53/200; 27%). CONCLUSIONS: Despite the recent increase in TAND research, studies that represent participants across the lifespan, LMIC research sites and non-pharmacological interventions were identified as future priorities. The quality of cohort studies requires improvement, to which the use of standardised direct behavioural assessments may contribute. In human studies, the academic level in particular warrants further investigation. Remote technologies could help to address many of the TAND knowledge gaps identified.

Empowering Families Through Technology: A Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem).

Introduction: Tuberous Sclerosis Complex (TSC) is a multi-system genetic disorder with various TSC-Associated Neuropsychiatric Disorders (TAND) that significantly impact the mental health and wellbeing of individuals with TSC and their caregivers. TAND represents the number one concern to families worldwide, yet is highly under-identified and under-treated. The clinician-administered TAND-Checklist (Lifetime version, TAND-L) has improved identification of TAND in clinical settings. However, many individuals with TSC and their caregivers still have difficulty accessing suitable support for diagnosis and evidence-informed interventions. The TANDem study is a community-based participatory research project with a broad range of TSC stakeholders aimed at reducing the TAND identification and treatment gap. Objectives: Participatory research identified three priority next steps: 1) development and validation of a self-report, quantified version of the TAND Checklist (TAND-SQ) and building the TAND-SQ into a smartphone application, 2) generation of consensus clinical recommendations for the identification and treatment of TAND, to be incorporated as a TAND toolkit on the app, and 3) establishment of a global TAND consortium through networking, capacity-building and public engagement activities. Methods: TANDem is a four-year project, and includes 24 consortium members from 10 countries representing all World Health Organization regions. Collaborators represent five stakeholder groups (family representatives, technology experts, clinical experts, non-profit organisations and researchers). Here we outline the project study protocol in detail, describing the scientific rationale, the project aims and objectives, the methods involved in participant recruitment, multi-site and multi-phase data collection, data analysis, ethical considerations including informed consent, data protection, privacy and confidentiality considerations related to the European Union General Data Protection Regulation and the USA Health Insurance Portability and Accountability Act. The expected outcomes and potential impact on the TSC community, implementation and dissemination of results, as well as future scale-up and scale-out plans are also discussed. Conclusions: The TANDem project has the potential to transform the global TSC community by empowering families living with TSC through an easily accessible digital solution to allow them to document their own TAND needs linked to an evidence-informed toolkit to enhance personalised healthcare, and by providing healthcare professionals with consensus clinical recommendations to prevent, identify and manage TAND manifestations.

Reintegration into school of childhood brain tumor survivors: a qualitative study using the International Classification of Functioning, Disability and Health - Children and Youth framework.

PURPOSE: The purpose of this study was to describe experiences of childhood brain tumor survivors (CBTS) and key figures in their environment after returning to school, using the International Classification of Functioning, Disability and Health - Children and Youth framework. METHODS: We conducted semi-structured interviews with five children, nine parents, 28 teachers, and 14 health professionals at three predetermined times over a two-year period. A qualitative content analysis was performed by linking meaningful units from transcribed interviews to ICF codes. RESULTS: Children experienced diverse body dysfunctions that could impede school participation, mostly related to knowledge acquisition and application, executive functioning and social life. Support at school and professional aftercare were essential to alleviate the child's difficulties. The teacher's attitude, parental involvement, and practices of collaboration belonging to the child's supportive network further influenced the reintegration process. Also, child-specific factors including emotional reactions to illness, age, and balance between school life and leisure time were considered to affect school readjustment. CONCLUSIONS: The International Classification of Functioning, Disability and Health framework is a useful instrument to systematically describe experiences of CBTS and key figures regarding school life, providing a common language to communicate for stakeholders in education and healthcare following the child's return.IMPLICATIONS FOR REHABILITATIONThe International Classification of Functioning, Disability and Health - Children and Youth framework is a useful instrument to describe experiences regarding school life of childhood brain tumor survivors (CBTS) and key figures in their environment.The ICF-CY model can be combined with a standardized assessment of neurocognition or performance to achieve a comprehensive view of the child's participation at school, by exploring both personal and environmental factors.Childhood brain tumor survivors mostly show impairments in acquiring and applying knowledge, executive functioning and social life, which may require increased support at school and professional aftercare.A positive attitude of school staff, high parental involvement in school life and adequate collaboration between parents, education and healthcare are important to prioritize in the context of reintegration into school of CBTS.

Burden of Illness and Quality of Life in Tuberous Sclerosis Complex: Findings From the TOSCA Study.

Research on tuberous sclerosis complex (TSC) to date has focused mainly on the physical manifestations of the disease. In contrast, the psychosocial impact of TSC has received far less attention. The aim of this study was therefore to examine the impact of TSC on health, quality of life (QoL), and psychosocial well-being of individuals with TSC and their families. Questionnaires with disease-specific questions on burden of illness (BOI) and validated QoL questionnaires were used. After completion of additional informed consent, we included 143 individuals who participated in the TOSCA (TuberOus SClerosis registry to increase disease Awareness) study. Our results highlighted the substantial burden of TSC on the personal lives of individuals with TSC and their families. Nearly half of the patients experienced negative progress in their education or career due to TSC (42.1%), as well as many of their caregivers (17.6% employed; 58.8% unemployed). Most caregivers (76.5%) indicated that TSC affected family life, and social and working relationships. Further, well-coordinated care was lacking: a smooth transition from pediatric to adult care was mentioned by only 36.8% of adult patients, and financial, social, and psychological support in 21.1, 0, and 7.9%, respectively. In addition, the moderate rates of pain/discomfort (35%) and anxiety/depression (43.4%) reported across all ages and levels of disease demonstrate the high BOI and low QoL in this vulnerable population.

Reintegration Into School After Treatment for a Brain Tumor: The Child's Perspective.

This multiple case study investigated perspectives of childhood brain tumor survivors on reintegration into school over a 2-year period. Semistructured interviews were conducted with 5 children at 3 times to obtain an extensive view of their overall school experience. Thematic analysis of data resulted in 4 themes: "school life and participation," "peer relations and friendships," "performance and difficulties," and "support and follow-up." Childhood brain tumor survivors consider school attendance as part of a normal disease-free life. Social contact and friendships represent their main motivating factors for returning to school. Attitudes and feelings regarding performance, difficulties, and support vary among survivors and change over time. In conclusion, continuity in learning and social contact established before the return facilitate the reintegration process. A comprehensive assessment of their academic and psychosocial functioning should be organized on reentry. Systematic follow-up by parents, school staff, and health professionals throughout the child's school career is required.

Attending school after treatment for a brain tumor: Experiences of children and key figures.

Reintegration into school is a milestone for childhood brain tumor survivors, as well as for their parents, teachers, and healthcare providers. We explored their experiences following the school re-entry by conducting semi-structured interviews. Thematic analysis resulted in four main themes: "school performance," "psychosocial well-being," "support and approach," and "communication and collaboration." Children were pleased to return to school despite confrontation with adverse outcomes. Parents, teachers, and healthcare providers identified current and future concerns and challenges, as well as opportunities for academic and personal development. Their experiences highlight the importance of coordinated and systematic follow-up in close collaboration with healthcare providers.

Short-term perspectives of parents and teachers on school reintegration of childhood brain tumour survivors.

Objective: To discover short-term changes in perspectives of parents and teachers of childhood brain tumour survivors on school reintegration, in order to reveal similarities and differences between them over time. Methods: Semi-structured interviews were conducted with parents and teachers of five children at the start and the end of a 1-year period following the child's school re-entry. Results: Thematic analysis of data resulted in three main themes: 'the child's performance and wellbeing', 'the school's attitude and approach' and 'communication and working together'. Parental concerns about child-specific changes and the school's approach to the child could either decrease or increase over time. Teachers remained focused on assessing their pupil's learning potential and finding ways of appropriate support. Their different perspectives on communication and working together became more pronounced. Conclusions: This study emphasizes the importance of clear communication and collaboration, coordinated follow-up and availability of healthcare professionals during the child's school reintegration.