The quality of human genetics consultations is examined. Topics of the selected consultations include possible hereditary predispositions to breast and ovarian cancer and possible genetic basis of syndromal disorders in children with developmental disabilities. The effect of educational videos on consultation hours will be examined. Whether a (possibly genetic) disease is actually present is not relevant for this purpose, nor is the exact diagnosis relevant for the study.
Conditions
Interventions
Group 1: Patients who have an appointment for a human genetics consultation are presented with several explanatory videos before the appointment and rate the doctor-patient interaction after the appoi
Sponsors
Institut für Medizinische Psychologie; Zentrum für Psychosoziale Medizin; Universitätsklinikum Heidelberg
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: The study will only include subjects who are of legal age and capable of giving consent and who are undergoing human genetic counseling and testing at Heidelberg University Hospital or Hannover Medical School, either because of a predisposition to tumors or for other reasons. It is a prerequisite that they have understood, consented to, and signed the informed consent form and the study protocol. The inclusion criteria for subjects presenting for hereditary breast cancer are the same as the inclusion criteria for subjects presenting for syndromic disease. Only physicians of full age who are able to give consent and who perform human genetic consultations at Heidelberg University Hospital or Hannover Medical School will be included. The prerequisite here is also that they have read the information sheet and the consent form and have understood and consented to the study procedure.
Exclusion criteria
Exclusion criteria: Exclusion criteria among subjects consist of refusal to participate in the study or subsequent withdrawal of consent to participate on the part of the study participants. Similarly, subjects who seek genetic counseling online will be excluded. Similarly, individuals who are unable to understand the content of the videos themselves due to language barriers will not be included. Our surveys will only be conducted on individuals of legal age. In the context of the study, only initial presentations in the human genetic consultation and no reports of findings are examined, so that patients who visit the human genetic consultation due to a report of findings are not included in the study. Similarly, individuals who seek human genetic counseling online/via video call will be excluded. The exclusion criteria for subjects presenting for hereditary breast cancer are the same as the exclusion criteria for subjects presenting for syndromal disease. Exclusion criteria for physicians consist of refusal to participate in the study or subsequent withdrawal of consent to participate on the part of the physicians.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The following questionnaires are used to record the target criterion, namely the doctor-patient interaction: Questions given to study participants after the consultation: - Satisfaction with Decision (Holmes-Rovner et al., 1996), Satisfaction with Genetic Consultation (DeMarco et al., 2004): and Patient Satisfaction (Kisa et al., 2011).These three questionnaires measure patient satisfaction with respect to the interaction with the physician and the physician-patient conversation, respectively. They are used to measure whether viewing the videos prior to the consultation is associated with higher satisfaction among study participants. - Physician-Patient Interaction (Bieber et al., 2011): This questionnaire is used to examine study participants' perceived quality of physician-patient interaction as a function of whether or not they viewed videos, among other factors. - Befindlichkeit/Affekt (Breyer & Bluemke, 2016): The PANAS measures positive and negative affect of the study participants. We can thereby relate participants current feelings of well-being to their ratings of the physician-patient interaction. Questions physicians receive after the consultation: - Which panel/examination was ordered: (exome vs. breast cancer panel): Used to verify after the fact that patients were shown the correct videos. - Physician Satisfaction with Interaction (Kisa et al., 2011): This captures whether physicians who were in conversation with individuals who had previously seen the videos rated the physician-patient interaction as better than those in the control group without videos. - Workload (Flägel et al., 2019): This measures whether physicians who had conversations with people who had previously seen the videos rated the physician-patient interaction as better than the control group without videos. | — |
Secondary
| Measure | Time frame |
|---|---|
| The following is a brief explanation of the questions and questionnaires used in this study that are not part of the main outcome criterion (doctor-patient interaction): Questionnaires completed online by study participants prior to the consultation: - Short scale for recording willingness to use technology (Neyer et al., 2012): This questionnaire is used to record the affinity of the test persons for technology. This has the background that it is of interest to us whether and how the technology affinity of the test persons is related to the evaluation of the educational videos. - Questions about digital prior information (self-generated): These questions capture whether the subjects have already informed themselves about contents of the consultation or their disease in advance to the study and is used to investigate whether digital prior information is related to the satisfaction of the consultation or the evaluation of the videos. - Information Avoidance: Based on the Information Avoidance Scale (Howell & Shepperd, 2016), several information avoidance questions were developed for study participants that can be applied to the consultation. These questions are used to capture whether individuals who have a low need for information report benefiting less from the educational videos than individuals who have a high need for information. The exact questions can be found in the separate documents. - Health Literacy (Brice et al., 2014): an item that measures whether participants in the study have help understanding medical texts. This info is needed to assess how easy it is likely to be for individual participants in the study to understand the information given in the videos. - Depressiveness and anxiety: surveyed by the short questionnaire PHQ with four items (Kroenke et al., 2009). The purpose here is to capture whether individuals who have high scores in depressiveness and/or anxiety rate the videos differently. Questions to be answered by patients | — |
Countries
Germany
Contacts
Public ContactJulia Mahal
Institut für Medizinische PsychologieUniversitätsklinikum Heidelberg
Outcome results
None listed