Distress, anxiety, and depression in persons with hereditary cancer syndromes: Results from a nationwide cross-sectional study in Germany.

BACKGROUND: Persons with hereditary cancer syndromes (carriers) have a higher risk of developing cancer early. They are confronted with decisions regarding prophylactic surgeries, communication within their families, and childbearing. The present study aims to assess distress, anxiety, and depression in adult carriers and identify risk groups and predictors; clinicians can use to screen for particularly distressed persons. METHODS: N = 223 participants (n = 200 women, n = 23 men) with different hereditary cancer syndromes affected and unaffected by cancer answered questionnaires measuring their distress, anxiety, and depression levels. The sample was compared to the general population using one-sample t-tests. The n = 200 women with (n = 111) and without cancer (n = 89) were then compared and predictors for increased levels of anxiety and depression were identified using stepwise linear regression analyses. RESULTS: 66% reported clinical relevant distress, 47% reported clinical relevant anxiety, and 37% reported clinical relevant depression. Compared to the general population, carriers experienced increased distress, anxiety, and depression. Additionally, women with cancer suffered from more depressive symptoms than those without cancer. Past psychotherapy for a mental disorder and high distress were identified as predictors for increased anxiety and depression in female carriers. CONCLUSIONS: The results suggest that the psychosocial consequences of hereditary cancer syndromes are serious. Clinicians could regularly screen carriers regarding anxiety and depression. The NCCN Distress Thermometer can be combined with questions about past psychotherapy to identify especially vulnerable persons. Further studies are needed to develop psychosocial interventions.

Desire for Children and Distress in Women with Hereditary Cancer Syndromes.

The diagnosis of a hereditary cancer syndrome can be psychologically stressful and influence family planning. This study aimed to gain insights into the relationship between the desire for children and the distress of female carriers. Women (N = 255) with different hereditary cancer syndromes were assessed from November 2019 to July 2021 at genetic counseling centers, the centers of the German HBOC-Consortium and the centers of the German HNPCC-Consortium regarding their distress levels with the NCCN Distress Thermometer (DT). The desire for children was measured by self-developed questions. Levels of distress and desire for children were evaluated descriptively. Factors influencing the desire for children and distress were calculated using binary logistic regression: 56% (n = 51) of 18- to 39-year-old participants reported a desire to have children; 70.6% of the carriers with a desire for children indicated a need for advice from their physicians regarding family planning. The diagnosis led 61.5% to postpone the timing of family planning, and the majority (68.8%) opted for an earlier birth. Carriers had higher levels of distress. Younger carriers (p = 0.037) and those living in poorer economic circumstances (p = 0.011) were more distressed. The diagnosis of hereditary cancer syndrome affects family planning. The results emphasize the importance of physicians addressing family planning in their counseling sessions.

Development and Psychometric Evaluation of an Instrument Assessing Barriers to Growth Hormone Treatment (BAR-GHT).

Purpose: This paper presents development and validation of a new patient reported outcome measure (PRO), the Barriers to Growth Hormone Therapy (BAR-GHT) in a patient (child/adolescent) and a parent version. The BAR-GHT was developed to measure problems and potential barriers to GHT. Methods: The development and validation of the BAR-GHT was conducted according to the Food and Drug Administration (FDA) Guidance on the development of PROs. Concept elicitation included a literature review and open-ended interviews with young patients, parents, and clinical experts. Qualitative data were analyzed based on grounded theory principles and draft items were rated in terms of their importance and clarity. The instruments underwent psychometric validation in a German clinic-based patient population of children and adolescents who inject themselves and in a parent sample who inject their child. The statistical analysis plan included exploratory factor analysis, reliability, and validity. Results: 29 patients, 22 parents, and 4 clinical experts participated in the concept elicitation, 156 children and adolescents aged 8-18 years and 146 parents completed the validation study. Exploratory factor analysis resulted in six domains: Fear, Public Embarrassment, Annoyance, Daily Routine, Supplies, and Travel. Internal consistencies and test-retest reliabilities of the total score of both the patient version and the parent version were >0.8. Convergent and discriminant validity was demonstrated. Conclusions: The final 19-item BAR-GHT for patients aged 8-18 years and the 16-item version for parents can be considered reliable and valid PROs of barriers to GHT. Clinical Trial Registration: www.ClinicalTrials.gov, identifier: NCT03672617. Universal Trial Number (UTN) of the International Clinical Trials Registry Platform (ICTRP, www.who.int): U1111-1210-1036.

Assessment of Use and Preferences Regarding Internet-Based Health Care Delivery: Cross-Sectional Questionnaire Study.

BACKGROUND: There has been an incremental increase in the use of technology in health care delivery. Feasibility, acceptability, and efficacy of interventions based on internet technologies are supported by a growing body of evidence. OBJECTIVE: The aim of this study was to investigate use and preferences in the general adult population in Germany for remote, internet-based interaction (eg, email, videoconferencing, electronic medical records, apps). METHODS: A nationwide cross-sectional questionnaire survey in adults that was representative in terms of age, sex and educational level was carried out. RESULTS: A total of 22.16% (538/2428) of survey participants reported not using the internet for work or private use. The nonuser phenotype can be described as being older, having lower educational and income status, and living in less populated areas. The majority of participants within the cohort of internet users reported that they would not consider using electronic medical records (973/1849, 52.62%), apps (988/1854, 53.29%), or emails to report symptoms (1040/1838, 56.58%); teleconference with one (1185/1852, 63.98%) or more experts (1239/1853, 66.86%); or participate in video psychotherapy (1476/1853, 79.65%) for the purpose of medical consultation or treatment. Older age and lower educational level were the most robust predictors of assumed future denial of use. CONCLUSIONS: Our results point toward low use and preference rates among the general population for the use of telemedicine. It also seems that those who might benefit from telemedical interventions the most, are, in fact, those who are most hesitating. These low use and preference rates of eHealth should be considered prior to designing and providing future telemedical care, supporting the need for easy-to-use, data secure solutions.