A Decade of Genetic Counseling in Frontotemporal Dementia Affected Families: Few Counseling Requests and much Familial Opposition to Testing

A decade of genetic counseling of frontotemporal dementia (FTD) affected families has generated two important observations. First, the uptake rate for presymptomatic testing for FTD is low in our department of Clinical Genetics at the Erasmus Medical Center in the Netherlands. Second, FTD at-risk counselees reported substantial familial opposition to genetic testing, which is distinct from the attitude in Huntington Disease affected families. We hypothesize that the low acceptance for FTD genetic counseling is consequential to the familial opposition and explain this within the theoretical framework of separation-individuation. Furthermore, we hypothesize that separation-individuation problems do not similarly influence the acceptance of HD genetic counseling, due to the educative role of the well-organised patient organization for HD in the Netherlands. We offer counseling recommendations that serve to facilitate the individuation of the counselee with respect to the FTD genetic test

Quality of life in couples living with Huntington’s disease: the role of patients’ and partners’ illness perceptions

Research suggests that chronically ill patients and their partners perceive illness differently, and that these differences have a negative impact on patients’ quality of life (QoL). This study assessed whether illness perceptions of patients with Huntington’s disease (HD) differ from those of their partners, and examined whether spousal illness perceptions are important for the QoL of the couples (n = 51 couples). Partners reported that their HD-patient spouses suffered more symptoms and experienced less control than the patients themselves reported. Illness perceptions of patients and partners correlated significantly with patient QoL. Partners’ beliefs in a long duration of the patients’ illness and less belief in cure, were associated with patient vitality scores. Suggestions for future research emphasize the importance of qualitative research approaches in combination with cognitive-behavioural approaches

Guided online treatment in routine mental health care: an observational study on uptake, drop-out and effects

<p>Abstract</p> <p>Background</p> <p>Due to limited resources patients in the Netherlands often have to wait for a minimum of six weeks after registration for mental health care to receive their first treatment session. Offering guided online treatment might be an effective solution to reduce waiting time and to increase patient outcomes at relatively low cost. In this study we report on uptake, drop-out and effects of online problem solving treatment that was implemented in a mental health center.</p> <p>Methods</p> <p>We studied all 104 consecutive patients aged 18–65 years with elevated symptoms of depression, anxiety and/or burnout who registered at the center during the first six months after implementation. They were offered a five week guided online treatment. At baseline, five weeks and twelve weeks we measured depressive (BDI-II), anxiety (HADS-A) and burnout symptoms (MBI).</p> <p>Results</p> <p>A total of 55 patients (53%) agreed to start with the online treatment. Patients who accepted the online treatment were more often female, younger and lower educated than those who refused. There were no baseline differences in clinical symptoms between the groups. There were large between group effect sizes after five weeks for online treatment for depression (<it>d</it> = 0.94) and anxiety (<it>d</it> = 1.07), but not for burnout (<it>d</it> = −.07). At twelve weeks, when both groups had started regular face-to-face treatments, we no longer found significant differences between the groups, except for anxiety (<it>d</it> = 0.69).</p> <p>Conclusion</p> <p>The results of this study show that the majority of patients prefer online guided online treatment instead of waiting for face-to-face treatment. Furthermore, online PST increases speed of recovery and can therefore be offered as a first step of treatment in mental healthcare.</p