There were 134 responses; six participants were excluded from the analysis (four consented to participate but recorded no further answers and two participants reported that they did not have iCD). The survey was completed by 128 people with iCD, with an average age of 59 years (SD 12; range 22–89 years), 77% (n = 97) of whom were women. All surveys were completed online, and we received no requests for a paper copy of the questionnaire. Ten percent of participants reported having an additional neurological condition. Most participants lived in Australia or New Zealand (96.8%); other participants lived in the UK (1.6%) and the USA (1.6%). Participants were culturally diverse reporting backgrounds from Europe, Australia, New Zealand, Asia and America. Forty-three percent of participants were employed in full or part-time paid work. Most participants (52.4%) reported that their muscle spasms due to iCD were mild or moderate, and the average reported pain score was 5.1 out of 10 (SD 2.9; range 0–10) (Table 1). The full table including all results from the survey is available in the Online resource (Appendix 2).

Most participants (64%) reported having regular BoNT injections, with 86% of these reporting experiencing therapeutic benefits from them. Participants reported an average of 60% (SD 28%) improvement following injections with a range of 5–100%. Of those having regular BoNT injections, most (68%) had injections every 3 months, 18% had injections more frequently than 3 months, and 14% had an injection interval longer than 3 months. Seventy-six percent of participants were satisfied with their injection intervals. Of those participants dissatisfied with their injection intervals, 61% reported that injection intervals were fixed at a certain time and all reported they would prefer if their injections intervals could be more flexible. The most common reasons for ceasing injections were ineffectiveness of treatment (35%), the negative side effects (21%), the cost (9%) and the effect not lasting long enough (7%). Other less commonly reported reasons for ceasing BoNT included difficulty accessing the clinic (5%), the pain or stress of injections (5%), concern over the inexperience of the doctor administering the injections (2%) and the development of another condition affected by BoNT (2%) (Online resource, Appendix 2).

The perceived effect of various conservative treatments on participants' pain, muscle spasms and ease of neck movement is shown in Tables 2, 3 and 4. Specific physiotherapy treatment approaches were not assessed individually—the term “physiotherapy” referred to any treatment administered by a physiotherapist. The self-perceived beneficial strategies for reducing pain were the use of heat packs, relaxation, medication and massage, reported as useful by more than 40% of participants. Physiotherapy, general exercise, mindfulness and meditation were reported as the next most useful strategies in reducing pain by 30–40% of participants. Muscle spasms were reduced most frequently by using heat packs, massage, medication, relaxation and physiotherapy and were reported by 30–37% of participants. General exercise and mindfulness/meditation were reported as beneficial by 20–30% of participants in reducing muscle spasms. Ease of neck movement was improved after massage, heat packs, physiotherapy, general exercise and medication in 30–40% of participants. Relaxation was the next most useful strategy to ease neck movement, reported by 27% of participants (Tables 2, 3, 4).

Yoga and chiropractic treatment were tried by up to 30% of participants. Yoga was reported as useful by around half of those who had tried it, while chiropractic treatment was reported by the majority to have a minimal or negative effect on their iCD symptoms. Likewise, electrical stimulation, psychology, naturopathy, osteopathy and the Farias technique were tried by fewer than 20% of participants, with half reporting the benefits of psychology for pain and more than half reporting the benefits of the Farias technique and naturopathy in reducing muscle spasms and easing neck movement. The most common treatments reported as detrimental were general exercise, physiotherapy and massage reported by up to 10–16% of participants. Strategies that were tried by less than 5 participants (4%) were included in the “others” section (Tables 2, 3, 4).

A third of participants (33%) reported that they were severely affected by iCD, such that they could not perform normal everyday activities, and 61.9% reported slight or great difficulty coping with everyday life. Nearly three quarters of participants (71.7%) reported that it remains difficult or gets more difficult to cope with iCD over time, while only 22.8% reported that it is getting easier over time. Common difficulties reported included driving, socialising and being in stressful situations, for example in the workplace. Four participants described the variability of the condition and the effect that it has on their ability to cope, for example:

“Having had the cervical dystonia for so long it has gone through many stages regarding pain, shaking of the head, ability to cope with everyday life so no one answer applies to my situation”.

Eleven participants described the life modifications that they use to cope with iCD, including the use of medication and making modifications to daily tasks to accommodate the iCD, for example:

“My family and I have changed our whole way of living to cope with my dystonia. So initially it was extremely difficult, now it is ok to cope with”.

The most frequently reported strategy to cope with iCD was getting sufficient sleep or rest (n = 87). Other commonly reported activities were having the support of family and friends (n = 62), being engaged in enjoyable hobbies (n = 51), relaxation, mindfulness (n = 50) and exercise (n = 49) (Fig. 1). Other strategies for coping reported by fewer participants included attending social activities (n = 31), travel (n = 22), work (n = 16), medication (n = 11), gardening (n = 6), massage (n = 3), yoga (n = 3) and being in a support group (n = 2). One participant described their life modifications to cope with their iCD as “changing my life to reduce stress and physical work as much as possible”, while another participant summarised their condition as “my dystonia is very much affected by what is happening in my life at certain times. This includes both physical and mental situations”.

Activities that help participants to cope with their iCD

Forty-six percent of participants (n = 53) reported that they would like to have more choices in how they manage their iCD, while 37% (n = 43) were unsure. Participants commented that they would like more treatment options, easier access to medical specialists and increased research to find new effective treatments. One participant summarised their desire with this quote “Would like specialist team to help me have a systematic and tested regime effective in managing dystonia”.

Fifty-six percent of participants reported that they took most responsibility for their iCD management, with a further 34% reporting that they relied on their neurologist to manage their dystonia. Two participants described the benefits of having a team approach to their iCD management with these quotes: “The support of my neurologist is also extremely important. I view the management of my Dystonia as like an equal partnership between treatments I have initiated myself and the Botox injections I receive” and “My neuro and I [are] working together to get the best possible outcome”.