| Title |
Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia
|
|---|---|
| Published in |
Patient preference and adherence, August 2016
|
| DOI | 10.2147/ppa.s106560 |
| Pubmed ID | |
| Authors |
Joanna Taylor, Michele Poliziani, Xierong Liu, Marco Koch |
| Abstract |
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. 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. 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. 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. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 2 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Practitioners (doctors, other healthcare professionals) | 2 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 53 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 53 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Other | 8 | 15% |
| Student > Master | 6 | 11% |
| Researcher | 5 | 9% |
| Student > Doctoral Student | 4 | 8% |
| Student > Bachelor | 3 | 6% |
| Other | 8 | 15% |
| Unknown | 19 | 36% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 9 | 17% |
| Agricultural and Biological Sciences | 3 | 6% |
| Social Sciences | 3 | 6% |
| Neuroscience | 3 | 6% |
| Nursing and Health Professions | 2 | 4% |
| Other | 10 | 19% |
| Unknown | 23 | 43% |
Attention Score in Context
This research output has an Altmetric Attention Score of 4. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 13 April 2021.
All research outputs
#7,853,067
of 25,576,275 outputs
Outputs from Patient preference and adherence
#552
of 1,769 outputs
Outputs of similar age
#124,305
of 381,680 outputs
Outputs of similar age from Patient preference and adherence
#33
of 78 outputs
Altmetric has tracked 25,576,275 research outputs across all sources so far. This one has received more attention than most of these and is in the 69th percentile.
So far Altmetric has tracked 1,769 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 7.5. This one has gotten more attention than average, scoring higher than 67% of its peers.
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We're also able to compare this research output to 78 others from the same source and published within six weeks on either side of this one. This one has gotten more attention than average, scoring higher than 57% of its contemporaries.