BackgroundPitt-Hopkins syndrome (PTHS; MIM# 610954) is a genetically determined entity mainly caused by mutations in TransCription Factor 4 (TCF4). We have developed a new way to collect information on (ultra-)rare disorders through a web-based database which we call ‘waihonapedia’ (waihona [meaning treasure in Hawaiian] encyclopaedia).MethodsWe have built a waihonapedia system in a collaboration between physicians, social scientists, and parent support groups. The system consists of an initial extensive questionnaire for background cross-sectional data, and subsequent follow-up using small questionnaires, with a particular focus on behavioural aspects. The system was built to be used through the internet, ensuring a secure environment, respecting privacy for participants, and acting automated to allow for low costs and limiting human mistakes in data handling. Recruitment of participants is through the patient support groups. In addition, as a sub-study, we used the data from the waihonapedia system to compare the two proposed diagnostic classification systems for PTHS.ResultsWe present here the results of the initial, cross-sectional questionnaire in which early development, physical health, cognition and behaviour are interrogated, and to which modules specific for PTHS were added on epilepsy and breathing patterns. We describe 101 individuals with a molecularly confirmed diagnosis of PTHS.Comparison of the two classification systems aimed at helping the clinical diagnosis was performed in 47 of the present PTHS individuals, with disappointing results for both. Internationally accepted clinical diagnostic criteria are needed.ConclusionThe present cross-sectional data on the natural history of PTHS have yielded useful information which will further increase when follow-up data will be added. No doubt this will improve both care and research.
BackgroundHealth care professionals who are frequently coping with traumatic events have an increased risk of developing a posttraumatic stress disorder. Research among physicians is scarce, and obstetrician-gynecologists may have a higher risk. Work-related traumatic events and posttraumatic stress disorder among obstetricians-gynecologists and the (desired) type of support were studied.MethodsA questionnaire was emailed to all members of the Dutch Society of Obstetrics and Gynaecology, which included residents, attending, retired and non-practicing obstetricians-gynecologists. The questionnaire included questions about personal experiences and opinions concerning support after work-related events, and a validated questionnaire for posttraumatic stress disorder.ResultsThe response rate was 42.8% with 683 questionnaires eligible for analysis. 12.6% of the respondents have experienced a work-related traumatic event, of which 11.8% met the criteria for current posttraumatic stress disorder. This revealed an estimated prevalence of 1.5% obstetricians-gynecologists with current posttraumatic stress disorder. 12% reported to have a support protocol or strategy in their hospital after adverse events. The most common strategies to cope with emotional events were: to seek support from colleagues, to seek support from family or friends, to discuss the case in a complication meeting or audit and to find distraction. 82% would prefer peer-support with direct colleagues after an adverse event.ConclusionsThis survey implies that work-related events can be traumatic and subsequently can lead to posttraumatic stress disorder. There is a high prevalence rate of current posttraumatic stress disorder among obstetricians-gynecologists. Often there is no standardized support after adverse events. Most obstetrician-gynecologists prefer peer-support with direct colleagues after an adverse event. More awareness must be created during medical training and organized support must be implemented.Electronic supplementary materialThe online version of this article (10.1186/s12888-018-1659-1) contains supplementary material, which is available to authorized users.
Background: PTSD in pregnant women is associated with adverse outcomes for mothers and their children. It is unknown whether pregnant women with PTSD, or symptoms of PTSD, can receive targeted treatment that is safe and effective. Objective: The purpose of the present paper was to assess the effectiveness and safety of treatment for (symptoms of) PTSD in pregnant women. Method: A systematic review was conducted in accordance with the PRISMA guidelines in Pubmed, Embase, PsychINFO, and Cochrane. In addition, a case is presented of a pregnant woman with PTSD who received eye-movement desensitization and reprocessing (EMDR) therapy aimed at processing the memories of a previous distressing childbirth. Results: In total, 13 studies were included, involving eight types of interventions (i.e. trauma-focused cognitive behavioural therapy, exposure therapy, EMDR therapy, interpersonal psychotherapy, explorative therapy, self-hypnosis and relaxation, Survivor Moms Companion, and Seeking Safety Intervention). In three studies, the traumatic event pertained to a previous childbirth. Five studies reported obstetrical outcomes. After requesting additional information, authors of five studies indicated an absence of serious adverse events. PTSD symptoms improved in 10 studies. However, most studies carried a high risk of bias. In our case study, a pregnant woman with a PTSD diagnosis based on DSM-5 no longer fulfilled the criteria of PTSD after three sessions of EMDR therapy. She had an uncomplicated pregnancy and delivery. Conclusion: Despite the fact that case studies as the one presented here report no adverse events, and treatment is likely safe, due to the poor methodological quality of most studies it is impossible to allow inferences on the effects of any particular treatment of PTSD (symptoms) during pregnancy. Yet, given the elevated maternal stress and cortisol levels in pregnant women with PTSD, and the fact that so far no adverse effects on the unborn child have been reported associated with the application of trauma-focused therapy, treatment of PTSD during pregnancy is most likely safe. Los efectos del tratamiento del TEPT durante el embarazo: revisión sistemática y estudio de caso Antecedentes: El TEPT en mujeres embarazadas se asocia con consecuencias adversas para las madres y sus hijos. Se desconoce si las mujeres que están embarazadas y sufren de TEPT, o síntomas de TEPT, pueden recibir un tratamiento dirigido que sea seguro y efectivo. Objetivo: El objetivo del presente trabajo fue evaluar la efectividad y la seguridad del tratamiento para (síntomas de) TEPT en mujeres embarazadas. Método: Se realizó una revisión sistemática de acuerdo con las directrices PRISMA en Pubmed, Embase, PsychINFO y Cochrane. Además, se presenta un caso de una mujer embarazada con TEPT que recibió terapia de desensibilización y reprocesamiento por movimientos oculares (EMDR) destinada a procesar los recuerdos de un parto traumático anterior. Resultados: En total, se incluyeron 13 estudios, que incluyeron ocho tipos de intervencion...
Introduction Traumatic events that occur in a clinical setting can have long‐lasting adverse effects on persons who are affected, including health care providers. This study investigated the prevalence of work‐related traumatic events, posttraumatic stress disorder (PTSD), anxiety, and depression among Dutch midwives. Additionally, differences between midwives working in primary care (independently assisting births at home and in birthing centers) and midwives working in secondary or tertiary care (hospital setting) were examined. Finally, this study investigated the support midwives would like to receive after experiencing a work‐related adverse event. Methods A descriptive, cross‐sectional online survey of Dutch midwives was conducted. The respondents completed a questionnaire about demographic and work‐related events, as well as the Trauma Screening Questionnaire and the Hospital Anxiety and Depression Scale. Results The estimated response rate was 23%, with 691 questionnaires eligible for analysis. Thirteen percent of respondents reported having experienced at least one work‐related traumatic event. Among these, 17% screened positive for PTSD, revealing an estimated PTSD prevalence of 2% among Dutch midwives. Clinically relevant anxiety symptoms were reported by 14% of the respondents, significantly more often among midwives working in primary care (P = .014). Depressive symptoms were reported by 7% of the respondents. The desired strategies to cope with an adverse event were peer support by direct colleagues (79%), professional support from a coach or psychologist (30%), multidisciplinary peer support (28%), and support from midwives who are not direct coworkers (17%). Discussion Dutch midwives are at risk of experiencing work‐related stressful or traumatic events that might lead to PTSD, anxiety, or depression. Midwives working in primary care reported higher levels of anxiety compared with their colleagues working in a clinical setting (secondary or tertiary care). Most midwives preferred peer support with direct colleagues after an adverse event, and some could have profited from easier access to seeking professional help. It could be speculated that midwives would benefit from increased awareness about work‐related traumatic events as well as implementation of standardized guidelines regarding support after a traumatic event.
Imaginal exposure is an essential element of trauma-focused psychotherapies for posttraumatic stress disorder (PTSD). Exposure should in particular focus on the "hotspots," the parts of trauma memories that cause high levels of emotional distress which are often reexperienced. Our aim was to investigate whether differences in the focus on hotspots differentiate between successful and unsuccessful trauma-focused psychotherapies. As part of a randomized trial, 45 PTSD patients completed brief eclectic psychotherapy for PTSD. We retrospectively assessed audio recordings of therapy sessions of 20 patients. Frequency of hotspots and the associated emotions, cognitions, and characteristics were compared for the most successful (n = 10) versus the least successful (n = 10) treatments. The mean number of unique hotspots per patient was 3.20, and this number did not differ between successful and unsuccessful treatments. In successful treatments, however, hotspots were more frequently addressed (r = .48), and they were accompanied by more characteristics of hotspots (r = .39), such as an audible change in affect, indicating medium- to large-sized effects. Repeatedly focusing on hotspots and looking for associated characteristics of hotspots may help clinicians to enhance the efficacy of imaginal exposure for patients who would otherwise show insufficient response to treatment.
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