{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,17]],"date-time":"2026-01-17T04:13:01Z","timestamp":1768623181726,"version":"3.49.0"},"reference-count":58,"publisher":"MDPI AG","issue":"12","license":[{"start":{"date-parts":[[2022,11,22]],"date-time":"2022-11-22T00:00:00Z","timestamp":1669075200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"MSMT CR programme Cooperatio 38\u2014Neuroscience, Charles University"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JPM"],"abstract":"<jats:p>Introduction: Huntington\u2019s disease (HD) is often on the margin of standard medical practice due to its low prevalence, the lack of causal treatment, and the typically long premanifest window prior to the onset of the symptoms, which contrasts with the long-lasting burden that the disease causes in affected families. Methods: To capture these socio-psychological aspects of HD and map the experiences of affected individuals, persons at risk of HD, and caregivers, we created a questionnaire using a qualitative research approach. The questionnaire containing 16 questions was conducted online for a period of three months through patient associations in Slovakia and their infrastructures. Results: In total, we received 30 responses. The survey results, in particular, indicate insufficient counselling by physicians with explicitly missing information about the possibility of preimplantation genetic diagnostic. There was also a necessity to improve comprehensive social and health care in the later stages of the disease, raise awareness of the disease in the general health community, and provide more information on ongoing clinical trials. Conclusion: The psychosocial effects, as well as the burden, can be mitigated by comprehensive genetic counselling as well as reproductive and financial guidelines and subsequent therapeutic programs to actively support patients, caregivers, children, and adolescents growing up in affected families, preferably with the help of local HD community association. Limitations: We have used online data collection to reach a wider HD community, but at the same time, we are aware that the quality of the data we would obtain through face-to-face interviews would be considerably better. Therefore, future studies need to be conducted to obtain more detailed information.<\/jats:p>","DOI":"10.3390\/jpm12121941","type":"journal-article","created":{"date-parts":[[2022,11,22]],"date-time":"2022-11-22T08:25:28Z","timestamp":1669105528000},"page":"1941","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Psychosocial Impact of Huntington\u2019s Disease and Incentives to Improve Care for Affected Families in the Underserved Region of the Slovak Republic"],"prefix":"10.3390","volume":"12","author":[{"given":"Katar\u00edna","family":"Hub\u010d\u00edkov\u00e1","sequence":"first","affiliation":[{"name":"Neuropsychiatric Department, Psychiatric Hospital of Philipp Pinel in Pezinok, 90201 Pezinok, Slovakia"},{"name":"Third Faculty of Medicine, Charles University in Prague, 10000 Prague, Czech Republic"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tom\u00e1\u0161","family":"Rak\u00fas","sequence":"additional","affiliation":[{"name":"Neuropsychiatric Department, Psychiatric Hospital of Philipp Pinel in Pezinok, 90201 Pezinok, Slovakia"},{"name":"Third Faculty of Medicine, Charles University in Prague, 10000 Prague, Czech Republic"},{"name":"Department of Psychiatry, Slovac Medical University, 83303 Bratislava, Slovakia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0385-3071","authenticated-orcid":false,"given":"Al\u017ebeta","family":"M\u00fchlb\u00e4ck","sequence":"additional","affiliation":[{"name":"Department of Neuropsychiatry, kbo-Isar-Amper-Klinikum, 84416 Taufkirchen (Vils), Germany"},{"name":"Department of Neurology and Center of Clinical Neuroscience, 1st Faculty of Medicine, Charles University and General University Hospital in Prague, 12821 Prague, Czech Republic"},{"name":"Department of Neurology, University Hospital of Ulm, 89081 Ulm, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J\u00e1n","family":"Benetin","sequence":"additional","affiliation":[{"name":"Neuropsychiatric Department, Psychiatric Hospital of Philipp Pinel in Pezinok, 90201 Pezinok, Slovakia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lucia","family":"Bruncvik","sequence":"additional","affiliation":[{"name":"Third Faculty of Medicine, Charles University in Prague, 10000 Prague, Czech Republic"},{"name":"Landesklinikum Hainburg, 2410 Hainburg an der Donau, Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Zuzana","family":"Petr\u00e1\u0161ov\u00e1","sequence":"additional","affiliation":[{"name":"Neuropsychiatric Department, Psychiatric Hospital of Philipp Pinel in Pezinok, 90201 Pezinok, Slovakia"},{"name":"Third Faculty of Medicine, Charles University in Prague, 10000 Prague, Czech Republic"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jitka","family":"Bu\u0161kov\u00e1","sequence":"additional","affiliation":[{"name":"Third Faculty of Medicine, Charles University in Prague, 10000 Prague, Czech Republic"},{"name":"National Institute of Mental Health, 25067 Klecany, Czech Republic"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2483-0848","authenticated-orcid":false,"given":"Martin","family":"Brunovsk\u00fd","sequence":"additional","affiliation":[{"name":"Third Faculty of Medicine, Charles University in Prague, 10000 Prague, Czech Republic"},{"name":"National Institute of Mental Health, 25067 Klecany, Czech Republic"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2022,11,22]]},"reference":[{"key":"ref_1","unstructured":"Harper, P.S. 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