Psychosocial Impact of Huntington’s Disease and Incentives to Improve Care for Affected Families in the Underserved Region of the Slovak Republic
Abstract
:1. Introduction
2. Material and Methods
2.1. Study Assessment
2.2. Study Participants
3. Results
- (I)
- Knowledge about HD, including initial information about HD, the main source of information, reproductive options, information on experimental treatment, and additional information.
- (II)
- Genetic testing and counselling, including the process of testing and psychological support and reasons why an individual decided to take a genetic test or not to be tested.
- (III)
- Impact of HD on the relationships, financial burden and burden to HD (symptoms).
- (IV)
- Social and health care services in Slovakia, including experience and proposal for improvement.
3.1. First Information on HD
3.2. Genetic Counselling and Testing
3.3. The Impact of HD
3.3.1. Burden for Caregivers
3.3.2. Relationships
3.3.3. Impact on the Financial Situation of Families with HD
3.4. Social and Health Services in the Slovak Republic
“The patient is just waiting to die”.
“No support in the system”.
“Psychiatrists know nothing about it”.
“Inadequate, no one knows what to do”.
“Doctors and staff have minimal knowledge. Rather they take the disease as a sensation”.
4. Discussion
4.1. Genetic Counselling and Testing
4.2. Family Relationships
4.3. Future and Family Planning
4.4. Social and Health Care System Support
5. Limitations
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Harper, P.S. The Natural History of Huntington’s Disease; W.B. Saunders Company Ltd.: Philadelphia, PA, USA, 1991; pp. 127–139. [Google Scholar]
- Gusella, J.F.; Wexler, N.S.; Conneally, P.M.; Naylor, S.L.; Anderson, M.A.; Tanzi, R.E.; Watkins, P.C.; Ottina, K.; Wallace, M.R.; Sakaguchi, A.Y.; et al. A polymorphic DNA marker genetically linked to Huntington’s disease. Nature 1983, 306, 234–238. [Google Scholar] [CrossRef] [PubMed]
- Huntington’s Disease Collaborative Research Group. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington’s disease chromosomes. Cell 1993, 72, 971–983. [Google Scholar] [CrossRef]
- Roos, R.A.C. Huntington’s disease: A clinical review. Orphanet J. Rare Dis. 2010, 5, 40. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Snell, R.G.; Macmillan, J.C.; Cheadle, J.P.; Fenton, I.; Lazarou, L.P.; Davies, P.; Shaw, D.J. Relationship between trinucleotide repeat expansion and phenotypic variation in Huntington’s disease. Nat. Genet. 1993, 4, 393–397. [Google Scholar] [CrossRef] [PubMed]
- Gusella, J.; MacDonald, M. Huntington’s disease. Semin. Cell Biol. 1995, 6, 21–28. [Google Scholar] [CrossRef]
- Nopoulos, P.C. Huntington disease: A single-gene degenerative disorder of the striatum. Dialogues Clin. Neurosci. 2016, 18, 91–98. [Google Scholar] [CrossRef]
- Rubinsztein, D.; Leggo, J.; Coles, R.; Almqvist, E.; Biancalana, V.; Cassiman, J.; Hayden, M.R. Phenotypic characterisation of individuals with 30–40 CAG repeats in the Huntington disease (HD) gene reveals HD cases with 36 repeats and apparently normal elderly individuals with 36–39 repeats. Am. J. Hum. Genet. 1996, 59, 16–22. [Google Scholar] [PubMed]
- Ha, A.D.; Jankovic, J. Exploring the correlates of intermediate CAG repeats in Huntington disease. Postgrad. Med. 2011, 123, 116–121. [Google Scholar] [CrossRef] [PubMed]
- Duyao, M.; Ambrose, C.; Myers, R.; Novelletto, A.; Persichetti, F.; Frontali, M.; Macdonald, M. Trinucleotide repeat length instability and age of onset in Huntington’s disease. Nat. Genet. 1993, 4, 387–392. [Google Scholar] [CrossRef]
- Quarrell, O.W.J.; Nance, M.A.; Nopoulos, P.; Paulsen, J.S.; Smith, J.A.; Squitieri, F. Managing juvenile Huntington’s disease. Neurodegener. Dis. Manag. 2013, 3, 267–276. [Google Scholar] [CrossRef]
- Apolinário, T.A.; Paiva, C.L.A.; Agostinho, L.A. Intermediate alleles of Huntington’s disease HTT gene in different populations worldwide: A systematic review. Genet. Mol. Res. 2017, 16, 1–16. [Google Scholar] [CrossRef] [PubMed]
- Radder, D.L.M.; Nonnekes, J.; Van Nimwegen, M.; Eggers, C.; Abbruzzese, G.; Alves, G.; Bloem, B.R. Recommendations for the Organization of Multidisciplinary Clinical Care Teams in Parkinson’s Disease. J. Park. Dis. 2020, 10, 1087–1098. [Google Scholar] [CrossRef]
- Mühlbäck, A.; Lindenberg, K.S.; Saft, C.; Priller, J.; Landwehrmeyer, G.B. Genselektive Therapieansätze bei der Huntington-Krankheit. Der Nervenarzt. 2020, 91, 303–311. [Google Scholar] [CrossRef] [Green Version]
- Nance, M.A.; Paulsen, J.S.; Rosenblatt, A.; Wheelock, V. A Physician’s Guide to the Management of Huntington Disease, 3rd ed.; The Huntington Society of Canada (HSC): Waterloo, ON, Canada, 2013. [Google Scholar]
- Langley, C.; Gregory, S.; Osborne-Crowley, K.; O´Callaghan, C.; Zeun, P.; Lowe, J.; Johnson, E.B.; Papoutsi, M.; Scahill, R.; Rees, G.; et al. Fronto-striatal circuits for cognitive flexibility in far from onset Huntington’s disease: Evidence from the Young Adult Study. J. Neurol. Neurosurg. Psychiatry 2021, 92, 143–149. [Google Scholar] [CrossRef]
- Ready, R.E.; Mathews, M.; Leserman, A.; Paulsen, J.S. Patient and caregiver quality of life in Huntington’s disease. Mov Disord. 2008, 23, 721–726. [Google Scholar] [CrossRef] [Green Version]
- Aubeeluck, A.V.; Buchanan, H.; Stupple, E.J. ‘All the burden on all the carers’: Exploring quality of life with family caregivers of Huntington’s disease patients. Qual. Life Res. 2012, 21, 1425–1435. [Google Scholar] [CrossRef]
- Craufurd, D.; Macleod, R.; Frontali, M.; Quarrell, O.; Bijlsma, E.K.; Davis, M.; Roos, R.A. Diagnostic genetic testing for Huntington’s disease. Pract. Neurol. 2015, 15, 80–84. [Google Scholar] [CrossRef] [Green Version]
- Nance, M.A. Genetic counseling and testing for Huntington’s disease: A historical review. Am. J. Med. Genet. Part B: Neuropsychiatr. Genet. 2017, 174, 75–92. [Google Scholar] [CrossRef]
- Macleod, R.; Tibben, A.; Frontali, M.; Evers-Kiebooms, G.; Jones, A.; Martinez-Descales, A.; Roos, R. Recommendations for the predictive genetic test in Huntington’s disease. Clin. Genet. 2013, 83, 221–231. [Google Scholar] [CrossRef]
- Ramond, F.; Quadrio, I.; Le Vavasseur, L.; Chaumet, H.; Boyer, F.; Bost, M.; Ollagnon-Roman, E. Predictive testing for Huntington disease over 24 years: Evolution of the profile of the participants and analysis of symptoms. Mol. Genet. Genom. Med. 2019, 7, e00881. [Google Scholar] [CrossRef]
- Stopford, C.; Ferrer-Duch, M.; Moldovan, R.; MacLeod, R. Improving follow up after predictive testing in Huntington’s disease: Evaluating a genetic counselling narrative group session. J. Community Genet. 2020, 11, 47–58. [Google Scholar] [CrossRef] [Green Version]
- MacLeod, R.; Moldovan, R.; Stopford, C.; Ferrer-Duch, M. Genetic Counselling and Narrative Practices: A Model of Support following a "Negative" Predictive Test for Huntington’s Disease. J Huntingtons Dis. 2018, 7, 175–183. [Google Scholar] [CrossRef]
- Semaka, A.; Creighton, S.; Warby, S.; Hayden, M.R. Predictive testing for Huntington disease: Interpretation and significance of intermediate alleles. Clin. Genet. 2006, 70, 283–294. [Google Scholar] [CrossRef]
- Van Rij, M.C.; de Koning Gans, P.A.; van Belzen, M.J.; Roos, R.A.; Geraedts, J.P.; De Rademaeker, M.; de Die-Smulders, C.E. Genetic diagnosis for Huntington’s disease in the Netherlands (1998–2008). Clin. Genet. 2014, 85, 87–95. [Google Scholar] [CrossRef]
- EHA. European Huntington Association. 2022. Available online: http://eurohuntington.org/an-overview-of-the-huntingtons-disease-community/ (accessed on 16 August 2022).
- Huntington Slovakia. Spoločnosť pre pomoc pri Huntingtonovej chorobe. 2022. Available online: https://huntington.sk/o-nas/ (accessed on 30 July 2022).
- McAllister, M. Grounded Theory in Genetic Counseling Research. J. Genet. Couns. 2001, 10, 233–250. [Google Scholar] [CrossRef]
- Slade, M.E.; Priebe, S.E. Choosing Methods in Mental Health Research: Mental Health Research from Theory to Practice; Routledge/Taylor & Francis Group: New York, NY, USA, 2006. [Google Scholar]
- Avila-Giron, R. (1973). Medical and social aspects of Huntington’s chorea in the state of Zulia, Venezuela. Adv. Neurol. 1973, 1, 261–266. [Google Scholar]
- Batista, P.; Pererira, A. Quality of Life in Patients with Neurodegenerative Diseases. J. Neurol. Neurosci. 2016, 7, 1–7. [Google Scholar] [CrossRef]
- Manrique de Lara, A.M.; Soto-Gómez, L.; Núñez-Acosta, E.; Saruwatari-Zavala, G.; Rentería, M.E. Ethical issues in susceptibility genetic testing for late-onset neurodegenerative diseases. Am. J. Med. Genetics. Part B Neuropsychiatr. Genet. 2019, 180, 609–621. [Google Scholar] [CrossRef]
- Hayden, M.R.; Bombard, Y. Psychosocial effects of predictive testing for Huntington’s disease. Adv. Neurol. 2005, 96, 226–239. [Google Scholar]
- Kenen, R.H.; Schmidt, R.M. Stigmatisation of carrier status: Social implications of heterozygote genetic screening programs. Am. J. Public Health 1978, 68, 1116–1120. [Google Scholar] [CrossRef] [Green Version]
- Simpson, S.A.; Harper, P.S. Prenatal testing for Huntington’s disease: Experience within the UK 1994–1998. J. Med. Genet. 2001, 38, 333–335. [Google Scholar] [CrossRef] [Green Version]
- Quaid, K.A. Presymptomatic testing for Huntington disease in the United States. Am. J. Hum. Genet. 1993, 53, 785–787. [Google Scholar]
- Almqvist, E.W.; Bloch, M.; Brinkman, R.; Craufurd, D.; Hayden, M.R. A Worldwide Assessment of the Frequency of Suicide, Suicide Attempts, or Psychiatric Hospitalization after Predictive Testing for Huntington Disease. Am. J. Hum. Genet. 1999, 64, 1293–1304. [Google Scholar] [CrossRef]
- Tibben, A.; Duivenvoorden, H.J.; Niermeijer, M.F.; er Vlis, M.V.-v.; Roos, R.A.; Verhage, F. Psychological effects of presymptomatic DNA testing for Huntington’s disease in the Dutch program. Psychosom. Med. 1994, 56, 526–532. [Google Scholar] [CrossRef]
- Røthing, M.; Malterud, K.; Frich, J.C. Caregiver roles in families affected by Huntington’s disease: A qualitative interview study. Scand. J. Caring Sci. 2014, 28, 700–705. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Sparbel, K.J.; Driessnack, M.; Williams, J.K.; Schutte, D.L.; Tripp-Reimer, T.; McGonigal-Kenney, M.; Paulsen, J.S. Experiences of teens living in the shadow of Huntington Disease. J. Genet. Couns. 2008, 17, 327–335. [Google Scholar] [CrossRef] [Green Version]
- Kjoelaas, S.; Tillerås, K.H.; Feragen, K.B. The Ripple Effect: A Qualitative Overview of Challenges When Growing Up in Families Affected by Huntington’s Disease. J. Huntingt. Dis. 2020, 9, 129–141. [Google Scholar] [CrossRef] [Green Version]
- Etchegary, H. Healthcare experiences of families affected by Huntington disease: Need for improved care. Chronic Illn. 2011, 7, 225–238. [Google Scholar] [CrossRef]
- Winkler, E.; Ausserhofer, D.; Mantovan, F. The life as a caregiver of a person affected by Chorea Huntington: Multiple case study. Pflege Z. 2012, 65, 608–611. [Google Scholar]
- Mand, C.M.; Gillam, L.; Duncan, R.E.; Delatycki, M.B. “I’m scared of being like mum”: The Experience of Adolescents Living in Families with Huntington Disease. J. Huntingt. Dis. 2015, 4, 209–217. [Google Scholar] [CrossRef]
- Ellison, M. The impact of Huntington disease on young people. Handb. Clin. Neurol. 2017, 144, 179–182. [Google Scholar] [CrossRef]
- Evers-Kiebooms, G.; Nys, K.; Harper, P.; Zoeteweij, M.; Dürr, A.; Jacopini, G.; Simpson, S. Predictive DNA-testing for Huntington’s disease and reproductive decision making: A European collaborative study. Eur. J. Hum. Genet. 2002, 10, 167–176. [Google Scholar] [CrossRef] [Green Version]
- Decruyenaere, M.; Evers-Kiebooms, G.; Boogaerts, A.; Cassiman, J.J.; Cloostermans, T.; Demyttenaere, K.; Fryns, J.P. Psychological functioning before predictive testing for Huntington’s disease: The role of the parental disease, risk perception, and subjective proximity of the disease. J. Med. Genet. 1999, 36, 897–905. [Google Scholar]
- Decruyenaere, M.; Evers-Kiebooms, G.; Boogaerts, A.; Philippe, K.; Demyttenaere, K.; Dom, R.; Fryns, J.P. The complexity of reproductive decision-making in asymptomatic carriers of the Huntington mutation. Eur. J. Hum. Genet. 2007, 15, 453–462. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Richards, F.H.; Rea, G. Reproductive decision making before and after predictive testing for Huntington’s disease: An Australian perspective. Clin. Genet. 2005, 67, 404–411. [Google Scholar] [CrossRef] [PubMed]
- Quaid, K.A.; Swenson, M.M.; Sims, S.L.; Harrison, J.M.; Moskowitz, C.; Stepanov, N.; Westphal, B.J. What were you thinking?: Individuals at risk for Huntington Disease talk about having children. J. Genet. Couns. 2010, 19, 606–617. [Google Scholar] [CrossRef] [Green Version]
- Jona, C.M.H.; Labuschagne, I.; Mercieca, E.C.; Fisher, F.; Gluyas, C.; Stout, J.C.; Andrews, S.C. Families Affected by Huntington’s Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving. J. Huntingt. Dis. 2017, 6, 169–177. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Van Walsem, M.R.; Howe, E.I.; Iversen, K.; Frich, J.C.; Andelic, N. Unmet needs for healthcare and social support services in patients with Huntington’s disease: A cross-sectional population-based study. Orphanet J. Rare Dis. 2015, 10, 124. [Google Scholar] [CrossRef] [Green Version]
- Tarolli, C.G.; Chesire, A.M.; Biglan, K.M. Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature. Tremor Other Hyperkinet Mov. 2017, 11, 454. [Google Scholar] [CrossRef]
- Bates, G.P.; Dorsey, R.; Gusella, J.F.; Hayden, M.R.; Kay, C.; Leavitt, B.R.; Tabrizi, S.J. Huntington disease. Nat. Rev. Dis. Prim. 2015, 1, 15005. [Google Scholar] [CrossRef]
- Rawlins, M.D.; Wexler, N.S.; Wexler, A.R.; Tabrizi, S.J.; Douglas, I.; Evans, S.J.W.; Smeeth, L. The Prevalence of Huntington’s Disease. Neuroepidemiology 2016, 46, 144–153. [Google Scholar] [CrossRef]
- Squitieri, F.; Griguoli, A.; Capelli, G.; Porcellini, A.; D’Alessio, B. Epidemiology of Huntington disease: First post-HTT gene analysis of prevalence in Italy. Clin. Genet. 2016, 89, 367–370. [Google Scholar] [CrossRef]
- Eurostat. 2022. Available online: http://ec.europa.eu/eurostat/databrowser/view/tin00134/default/table?lang=en (accessed on 13 November 2022).
The Process of Genetic Counselling and Testing for HD | |
---|---|
Initial session |
|
Reflection period |
|
Second/third session |
|
Genetic test |
|
The results |
|
Follow-up sessions |
|
Advice and support |
|
Questions in Individual Categories of the Questionnaire | Answers and Particular Groups of Respondents (Number of Participants) | ||
---|---|---|---|
Patients with HD (N = 5)/Asymptomatic HD Carriers (N = 4) | Individuals at Risk (N = 5) | Partners of Asymptomatic Persons (N = 6)/Partners of Manifest HD Patients (N = 10) | |
Knowledge about HD | |||
Initial information How and when did you first learn about the risk or presence of HD in your family or partner? | At the age: 14, 38, 42, 39, 50/15, 35, 50, n.n. From family: 6, From doctor: 3 | At the age: 0, 14, 20, 38, n.n. | At the age: 7, 15, 25, 34, 39, n.n/25, 26, 30, 35, 38, 40, 46, 58, n.n, n.n From family: 5/1, From doctor: 1/5, From partner:0/4 |
The main source of information Where did you mainly get information about HD? How did your doctor teach you about HD? (open question) | From the family: 3; From doctor: 1, Internet: 7 | From the family: 2, From doctor: 0, Internet: 3 | From family:1, From doctor: 1, internet: 16 |
Reproductive options Has a doctor provided information on reproductive options, including PGD (your child would be healthy even if you/your partner is affected)? | Yes: 2 No, I am not interested anyway: 2 No, I searched by myself: 2 No, first time to hear: 3 | Yes: 2 No, I am not interested anyway: 2 No, I searched by myself: 1 No, first time to hear: 0 | Yes: 2 No, I am not interested anyway: 2 No, I searched by myself: 7 No, first time to hear: 3 |
Experimantal treatment Did you receive information on ongoing clinical trials for HD? How do you get any updated information? | Yes: 1 (doctor), 3 (Internet), family (2) No: 2 I am interested /I am not interested in updates: 8/0 | Yes: 4 (Internet) No: 1 I am interested /I am not interested in updates: 5/0 | Yes: 1 (doctor), 14 (Internet) No: 1 I am interested /I am not interested in updates: 15/1 |
Lack of knowledge What information do you think a person at risk for HD should receive? What did you find out over time, and would you appreciate it if you knew it before? (open questions) | PGD: 3 Consulting HD expert: 1 Early knowledge of HD risk (early diagnosis of parent/myself/not hiding HD in the family): 3; I don’t know: 2 | Reprod. options, PGD: 1 Better awareness among health professionals: 1 Entitlement to a disability pension: 1; I don’t know: 2 | PGD: 3 Information on research: 4 More support for HD community: 2 Consulting HD expert: 1; I don’t know: 6 |
Genetic testing (GT) | |||
Reasons for (not) being tested Please write down why you decided/consider being tested, resp. not to be tested? (open question) | For GT: know the truth: 2 Emerging symptoms: 3 Disability pension: 1 Future planning: 3 | For GT: because of the children: 1 Against GT: live a fulfilled life: 1 I don’t know: 2 | For GT: know the truth: 3 Future planning: 7 Disability pension: 1 Emerging symptoms: 3; I don’t know: 2 |
Psychologist Consultation Have you talked to a psychologist during genetic testing? Was it/was it not beneficial for you? | Yes: 2 (beneficial), 1 (not helpful) No: 7 | Yes: 1 (beneficial), 1 (not beneficial) No: 3 | Yes: 3 (beneficial), 2 (not beneficial) No: 11 |
Impact of HD | |||
Most aggravating symptom Which symptoms of HD are/were the most burdensome for you? (open question) | Positive test: 2 Motor skills (chorea): 5 Psychiatric (nervousness, cognitive decline): 2 | Motor skills (chorea): 2 Psychiatric (depression, cognitive decline, aggression): 4 I don’t know: 1 | Positive test: 1 Motor skills (chorea): 3 Psychiatric (cognitive decline, aggression): 7 Dysphagia: 3 Independence loss: 4 |
Financial burden How has HD affected your family budget? Was the help of the state sufficient for you? (open question) | Higher financial burden: 7 State support limited: 4, we are modest: 2, family help: 2. I don’t know: 2 | Higher financial burden: 4 State support limited: we are modest 2, family help: 1 Any support yet: 1 I don’t know: 1 | Higher financial burden: 13 State support limited: we are modest 3, family help: 5, extra job:1 Any support yet: 3 I don’t know: 3 |
Impact on relationships (answers resulted from other open-ended questions) | Blaming parents for hiding HD: 1 Fear of transmitting HD: 1 Hesitation/anxiety to say a positive result to the family: 2 Suspicion of alcoholism due to chorea: 2 Criminal prosecution: 2 | Decision with the partner to ignore the fears of the HD and live the life that will come: 1 | Anxiety about the gradual loss of a partner: 1 Fear of destroying the life of my healthy partner: 1 Fear of divorce: 2 Feeling my life is ruined due to illness of relatives: 1 |
Social and health care services in SR | |||
Experiences How do you evaluate social and nursing services for patients with HD in SR? | Insufficient—SSE staff and paramedics do not know HD: 5 I don’t know: 4 | Insufficient—SSE staff and paramedics do not know HD: 2 I don’t know: 3 | Insufficient—SSE staff and paramedics do not know HD: 9 Sufficient: 1; I don’t know: 6 |
Suggestions for improvement What do you think should be improved in social/health services for patients with HD? (open questions) | Better awareness among health professionals: 3 Support home care of HD patients: 1 Experts/Psychologists for HD: 1 I don’t know: 4 | Awareness among health professionals and the public: 2 I don’t know: 3 | Aids for later stages: 2 Special SSE for HD: 3 Better awareness: 5 Preferential appointment: 2 Support groups for both carriers and patients: Acceptance of the HD in the context of disability 1 |
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Hubčíková, K.; Rakús, T.; Mühlbäck, A.; Benetin, J.; Bruncvik, L.; Petrášová, Z.; Bušková, J.; Brunovský, M. Psychosocial Impact of Huntington’s Disease and Incentives to Improve Care for Affected Families in the Underserved Region of the Slovak Republic. J. Pers. Med. 2022, 12, 1941. https://doi.org/10.3390/jpm12121941
Hubčíková K, Rakús T, Mühlbäck A, Benetin J, Bruncvik L, Petrášová Z, Bušková J, Brunovský M. Psychosocial Impact of Huntington’s Disease and Incentives to Improve Care for Affected Families in the Underserved Region of the Slovak Republic. Journal of Personalized Medicine. 2022; 12(12):1941. https://doi.org/10.3390/jpm12121941
Chicago/Turabian StyleHubčíková, Katarína, Tomáš Rakús, Alžbeta Mühlbäck, Ján Benetin, Lucia Bruncvik, Zuzana Petrášová, Jitka Bušková, and Martin Brunovský. 2022. "Psychosocial Impact of Huntington’s Disease and Incentives to Improve Care for Affected Families in the Underserved Region of the Slovak Republic" Journal of Personalized Medicine 12, no. 12: 1941. https://doi.org/10.3390/jpm12121941
APA StyleHubčíková, K., Rakús, T., Mühlbäck, A., Benetin, J., Bruncvik, L., Petrášová, Z., Bušková, J., & Brunovský, M. (2022). Psychosocial Impact of Huntington’s Disease and Incentives to Improve Care for Affected Families in the Underserved Region of the Slovak Republic. Journal of Personalized Medicine, 12(12), 1941. https://doi.org/10.3390/jpm12121941