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Lawes-Wickwar, Sadie 
ORCID: https://orcid.org/0000-0001-9307-4532, McBain, Hayley, Hirani, Shashivadan P., Hurt, Catherine S., Dunlop, Nicola, Solly, Dianne, Crampton, Bridget, Newman, Stanton P. and Ezra, Daniel G.
(2021)
Which factors impact on quality of life for adults with blepharospasm and hemifacial spasm?
Orbit, 40 (2).
pp. 110-119.
ISSN 0167-6830
Abstract
Purpose: Benign essential blepharospasm (BEB) and hemifacial spasm (HFS) are debilitating conditions causing spasms to the eyes and/or face and can significantly impact on quality of life (QoL). Initial research has highlighted potential factors impacting on QoL in BEB, but there remains a wealth of demographic, clinical, and psychosocial factors that may contribute to QoL but have not received attention. Methods: Cross-sectional baseline data were collected before a single-masked randomised controlled trial from 130 adults with BEB and HFS recruited from botulinum toxin clinics at Moorfields Eye Hospital, London. QoL was measured using the 24-item Craniocervical Dystonia Questionnaire (CDQ24), which provides a total score and five subscale scores relating to Stigma, Emotional state, Pain, Activities of daily living (ADL), and Social/family life. Treating clinicians provided clinical data. Hierarchical multiple regressions were performed on this baseline data to identify significant predictors of QoL. Results: ADL and Stigma were the areas most impacted upon whilst patients experienced better adjustment in relation to Pain, Social/family life, and Emotional state. CDQ24 Total scores were explained by the model (80% variance) and were significantly associated with appearance concerns, emotional representations, perceived negative consequences of the condition, mood, and dose of botulinum toxin. Conclusions: Patients with BEB and HFS report a detrimental impact on ADL and perceived stigma in relation to their condition. Predominantly, individual perceptions and mood are associated with QoL in this population, rather than demographic and clinical factors, signifying areas to target in the design of future healthcare services or interventions.
| Item Type: | Article |
|---|---|
| Additional Information: | Funding Information: This work was supported by the Merz Pharma UK; Moorfields Eye Charity; NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust. The authors would like to acknowledge the valuable contribution made by the patients who took part in the research and for giving up their time. This project received funding from Merz Pharma Ltd and Moorfields Eye Charity. DGE received partial funding from the Department of Health?s NIHR Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology. Funding Information: The authors would like to acknowledge the valuable contribution made by the patients who took part in the research and for giving up their time. This project received funding from Merz Pharma Ltd and Moorfields Eye Charity. DGE received partial funding from the Department of Health’s NIHR Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology. Publisher Copyright: © 2020 Taylor & Francis Group, LLC. |
| Uncontrolled Keywords: | benign essential blepharospasm,facial dystonia,hemifacial spasm,psychosocial impact,quality of life,ophthalmology ,/dk/atira/pure/subjectarea/asjc/2700/2731 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > Norwich Medical School |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 02 Sep 2024 13:31 |
| Last Modified: | 25 Sep 2024 18:04 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/96424 |
| DOI: | 10.1080/01676830.2020.1733028 |
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