Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington’s disease gene expansion carriers
In providing optimal care, HDGECs should be considered as part of a complex, continuously changing environment, thereby taking into account their individual QoL experiences and tailoring care accordingly. HDGECs might benefit from forming helpful beliefs about future adaptability and resilience and developing adaptive coping strategies.
Authors
- Wiebke Frank (ORCID: https://orcid.org/0000-0002-7786-8831)
- Alžbeta Mühlbäck (ORCID: https://orcid.org/0000-0002-0385-3071)
- Stephen P. McKenna (ORCID: https://orcid.org/0000-0003-4238-8333)
- Niko Vegt (ORCID: https://orcid.org/0000-0001-5907-546X)
- Tom Burke (ORCID: https://orcid.org/0000-0002-6563-1597)
- Ian McKenna
- Ferdinando Squitieri (ORCID: https://orcid.org/0000-0002-7397-1727)
- Niels Henrik Chavannes (ORCID: https://orcid.org/0000-0002-8607-9199)
- Jacqueline Kerr (ORCID: https://orcid.org/0000-0003-2341-8138)
- Simone Migliore (ORCID: https://orcid.org/0000-0002-2665-231X)
- Ashley K. Putman (ORCID: https://orcid.org/0000-0002-5532-3427)
- Sabrina Maffi (ORCID: https://orcid.org/0000-0002-8295-8532)
- Olga Ulmanová (ORCID: https://orcid.org/0000-0001-7493-287X)
- Pearl J. C. van Lonkhuizen (ORCID: https://orcid.org/0000-0002-7036-768X)
- Stephanie Feleus (ORCID: https://orcid.org/0000-0002-1160-0920)
- Olga Klempířová (ORCID: https://orcid.org/0000-0001-6209-6042)
- Kristýna Dolečková (ORCID: https://orcid.org/0000-0002-9452-4002)
- Anna Coffey
- Jeanette Thorpe (ORCID: https://orcid.org/0000-0002-9168-5716)
- Muthukumaran Thangaramanujam (ORCID: https://orcid.org/0000-0003-0127-1921)
- Jan Roth (ORCID: https://orcid.org/0000-0002-5247-7746)
- Franziska Steck
- Eugenia Scaricamazza (ORCID: https://orcid.org/0000-0002-2767-7295)
- Melissa Casella
- Romama Konvalinková
- Emer O’Malley (ORCID: https://orcid.org/0000-0002-2745-4526)
- G. Bernhard Landwehrmeyer (ORCID: https://orcid.org/0000-0003-3375-790X)
- Ramona Moldovan (ORCID: https://orcid.org/0000-0002-6013-5076)
- Jennifer Hoblyn (ORCID: https://orcid.org/0000-0002-9393-4763)
- Eva Bezuchová
- Barbara D’Alessio (ORCID: https://orcid.org/0000-0002-8947-6755)
- Eline M. Meijer (ORCID: https://orcid.org/0000-0001-7078-5067)
- Chiara Di Giorgio
- Erik van Duijn (ORCID: https://orcid.org/0000-0003-2469-6252)
- Susanne T. de Bot (ORCID: https://orcid.org/0000-0002-3512-2468)
- Jiří Klempíř (ORCID: https://orcid.org/0000-0002-0735-7155)
- Anne‐Wil Heemskerk
- Leanne Slutter
- Peter Foley (ORCID: https://orcid.org/0000-0001-7039-2976)
- Esther C Arendts
Institutions
- Leiden University Medical Center (NL)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-11-29
- DOI
- https://doi.org/10.1186/s13023-024-03461-x
- Citations
- 2
- Primary Topic
- Genetic Neurodegenerative Diseases
- Type
- article
- Field-Weighted Citation Impact
- 0.54
Funders
- EU Joint Programme – Neurodegenerative Disease Research
- ZonMw