Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia
Michele Poliziani,1 Marco Koch,2 Xierong Liu1 1Opinion Health, London, UK; 2Merz Pharmaceuticals GmbH, Frankfurt am Main, Germany Background: The recommended reinjection interval for botulinum neurotoxin (BoNT) formulations in the treatment of cervical dystonia (CD) is generally ≥12 weeks,...
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| Format: | Article |
| Language: | English |
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Dove Medical Press
2016-08-01
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| Series: | Patient Preference and Adherence |
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| Online Access: | https://www.dovepress.com/striving-for-more-good-days-patient-perspectives-on-botulinum-toxin-fo-peer-reviewed-article-PPA |
| _version_ | 1818982809267601408 |
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| author | Poliziani M Koch M Liu X |
| author_facet | Poliziani M Koch M Liu X |
| author_sort | Poliziani M |
| collection | DOAJ |
| description | Michele Poliziani,1 Marco Koch,2 Xierong Liu1 1Opinion Health, London, UK; 2Merz Pharmaceuticals GmbH, Frankfurt am Main, Germany Background: The recommended reinjection interval for botulinum neurotoxin (BoNT) formulations in the treatment of cervical dystonia (CD) is generally ≥12 weeks, though intervals ≥10 weeks are approved for incobotulinumtoxinA in Europe. However, recurring symptoms can occur before the end of this period. Using qualitative research, we sought a greater understanding of disease burden, unmet patient needs, and barriers to treatment. Methods: We conducted online semistructured, focus-group discussions, and online forum follow-up discussions among patients with CD, focusing on disease burden, patient needs, injection cycle preferences, and relationships with health care professionals. A subset of patients was also questioned in telephone interviews about individual experiences of CD and BoNT treatment. All participants were UK residents who had received onabotulinumtoxinA or abobotulinumtoxinA for CD for ≥1 year. Results: Thirty-one patients (81% female; mean duration of CD 16.4 [range 4–31] years; mean BoNT injection cycle length 12.8 weeks) participated in the online focus-group and forum follow-up discussions. Of these, seven patients participated in telephone interviews. All had recurring symptoms between treatments, which substantially impacted on their work, family, and social life. Symptom severity fluctuated throughout an injection cycle and differed between patients and across injection cycles. Participants’ relationships with health care professionals and treatment satisfaction varied greatly. Many participants wanted longer-lasting and/or more stable symptom relief with shorter and/or more flexible injection intervals, according to individual needs. Lack of health care resources, long journeys to treatment centers, and immunogenicity/side-effect concerns were perceived as the main barriers to more flexible treatment. Conclusion: The high burden of recurring primary and secondary symptoms of CD considerably affects patients’ quality of life. Patient-led assessments of disease burden revealed that personalized, more flexible, and/or shorter BoNT injection intervals may reduce the day-to-day impact of CD. Collaboration between patients, clinicians, and health care systems may effect change and improve treatment for patients with CD. Keywords: botulinum toxin type A, cervical dystonia, patient survey, spasmodic torticollis, treatment satisfaction |
| first_indexed | 2024-12-20T17:53:07Z |
| format | Article |
| id | doaj.art-4ba2cb9c81274c9c9083c87b6638394c |
| institution | Directory Open Access Journal |
| issn | 1177-889X |
| language | English |
| last_indexed | 2024-12-20T17:53:07Z |
| publishDate | 2016-08-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | Patient Preference and Adherence |
| spelling | doaj.art-4ba2cb9c81274c9c9083c87b6638394c2022-12-21T19:30:48ZengDove Medical PressPatient Preference and Adherence1177-889X2016-08-01Volume 101601160828528Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystoniaPoliziani MKoch MLiu XMichele Poliziani,1 Marco Koch,2 Xierong Liu1 1Opinion Health, London, UK; 2Merz Pharmaceuticals GmbH, Frankfurt am Main, Germany Background: The recommended reinjection interval for botulinum neurotoxin (BoNT) formulations in the treatment of cervical dystonia (CD) is generally ≥12 weeks, though intervals ≥10 weeks are approved for incobotulinumtoxinA in Europe. However, recurring symptoms can occur before the end of this period. Using qualitative research, we sought a greater understanding of disease burden, unmet patient needs, and barriers to treatment. Methods: We conducted online semistructured, focus-group discussions, and online forum follow-up discussions among patients with CD, focusing on disease burden, patient needs, injection cycle preferences, and relationships with health care professionals. A subset of patients was also questioned in telephone interviews about individual experiences of CD and BoNT treatment. All participants were UK residents who had received onabotulinumtoxinA or abobotulinumtoxinA for CD for ≥1 year. Results: Thirty-one patients (81% female; mean duration of CD 16.4 [range 4–31] years; mean BoNT injection cycle length 12.8 weeks) participated in the online focus-group and forum follow-up discussions. Of these, seven patients participated in telephone interviews. All had recurring symptoms between treatments, which substantially impacted on their work, family, and social life. Symptom severity fluctuated throughout an injection cycle and differed between patients and across injection cycles. Participants’ relationships with health care professionals and treatment satisfaction varied greatly. Many participants wanted longer-lasting and/or more stable symptom relief with shorter and/or more flexible injection intervals, according to individual needs. Lack of health care resources, long journeys to treatment centers, and immunogenicity/side-effect concerns were perceived as the main barriers to more flexible treatment. Conclusion: The high burden of recurring primary and secondary symptoms of CD considerably affects patients’ quality of life. Patient-led assessments of disease burden revealed that personalized, more flexible, and/or shorter BoNT injection intervals may reduce the day-to-day impact of CD. Collaboration between patients, clinicians, and health care systems may effect change and improve treatment for patients with CD. Keywords: botulinum toxin type A, cervical dystonia, patient survey, spasmodic torticollis, treatment satisfactionhttps://www.dovepress.com/striving-for-more-good-days-patient-perspectives-on-botulinum-toxin-fo-peer-reviewed-article-PPAbotulinum toxin type Acervical dystoniapatient surveyspasmodic torticollistreatment satisfaction |
| spellingShingle | Poliziani M Koch M Liu X Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia Patient Preference and Adherence botulinum toxin type A cervical dystonia patient survey spasmodic torticollis treatment satisfaction |
| title | Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia |
| title_full | Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia |
| title_fullStr | Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia |
| title_full_unstemmed | Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia |
| title_short | Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia |
| title_sort | striving for more good days patient perspectives on botulinum toxin for the treatment of cervical dystonia |
| topic | botulinum toxin type A cervical dystonia patient survey spasmodic torticollis treatment satisfaction |
| url | https://www.dovepress.com/striving-for-more-good-days-patient-perspectives-on-botulinum-toxin-fo-peer-reviewed-article-PPA |
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