Striving for more good days: patient perspectives on botulinum toxin for the treatment of cervical dystonia

Figures & data

Table 1 Participants’ demographics and characteristics

Demographic	Survey participants (n=31)
Female, n (%)	25 (81)
Age group (years), n (%)
25–34	2 (6.5)
35–44	8 (25.8)
45–54	13 (41.9)
55–64	5 (16.1)
≥65	3 (9.7)
UK region, n (%)
England	27 (88)
Scotland	2 (6)
Northern Ireland	1 (3)
Wales	1 (3)
Mean (range) duration of CD, years	16.4 (4–31)
Mean (range) BoNT injection cycle length, weeks	12.8 (8–20)

Abbreviations: BoNT, botulinum neurotoxin; CD, cervical dystonia.

Figure 1 Conceptual representation of recurring core, primary, and secondary symptoms in cervical dystonia.

Notes: Core symptoms are those reported by almost all participants. Primary symptoms are those directly associated with cervical dystonia. Secondary symptoms are those caused by the primary symptoms of cervical dystonia.

Figure 2 Patterns of symptom progression between botulinum neurotoxin injections.

Table 2 Themes identified as being related to shorter/flexible injection intervals (verbatims)

Shorter injection cycles

“Every 8 weeks cause that’s when the effect wears off and the pain starts to become unbearable”.

“As soon as they start to wear off, ie, around every 6 weeks”.

“Every 6–8 weeks would be nice :-)”.

“I would, if I could, choose to have my injections every 6 weeks but I know that’s not possible”.

Flexible injection cycles

“Would feel more stable/in control if injections flexible, life would be a bit more predictable instead of a constant roller coaster of symptoms”.

“More accessible, flexible treatment. If you have the flu you don’t have to live with your symptoms for 6 weeks before your doc will see you”.

“… it being available to everyone, no matter where they live and on a regular basis when they need it”.

“It would be great if I could get the injection whenever I need it”.

Barriers to shorter/more flexible injection cycles

Staff and resource shortage: “I find it too stressful to call for a doc’s appointment … wouldn’t like the stress of calling and not getting an appointment for a few weeks”.

“They (the hospital) don’t have a nice friendly secretary who can arrange an appointment; it’s done by the ‘appointments department’ so therefore no understanding of my condition”.

“I once had to go 6 months (before re-injection because of) staff shortages”.

“The neurologist is always too busy to do more than administer the injections”.

Journey times: “I hate the long journey for my appointments, and my husband has to take time off work”.

“I have to go to another hospital approx. 25–30 miles away”.

Side effects: “Personally, I’d be worried about muscle wastage (which I’ve already had) and increased side effects”.

“I’ve been told that they won’t inject before the 13 weeks is up to stop you from becoming immune to it”.

Table 3 The health economic impact of recurring symptoms of cervical dystonia

Impact on patient and family

Reduced emotional well-being of patients and families (eg, reduced leisure activities)

Lost work hours relating to the carer (eg, driving patients to the clinic)

Lost work hours relating to the patient (eg, sick leave)

Provision of informal care by family members

Impact on society

Cost to the health care system (eg, provision of alternative treatment)

Cost to the welfare system (eg, benefits, unemployment)