The importance of the patient's perspective in decision-making in multiple sclerosis: Results of the OwnMS patient perspectives study.

BACKGROUND: Research is needed to identify the unmet disease education and communication needs of people with multiple sclerosis (PwMS) to support informed decision-making, enable self-management and maintain independence for PwMS for as long as possible. METHODS: An Expert Steering Group co-developed two studies for PwMS aged 18 years and over: a qualitative, online, patient community activity and a quantitative anonymised online survey. The quantitative survey was conducted in the UK from 12 September 2019 to 18 November 2019 amongst PwMS recruited via the Multiple Sclerosis (MS) Trust newsletter and their closed Facebook group. Questions explored the goals, desires, and knowledge gaps of PwMS. Self-reported data from people with relapsing-remitting multiple sclerosis (RRMS) were collated and reviewed, and discussed by the Steering Group. This paper presents descriptive statistics of the quantitative survey findings. RESULTS: The sample consisted of 117 participants with RRMS. Most respondents (73%) had personal goals related to lifestyle and many (69%) were concerned about maintaining independence. More than half of respondents were worried about planning for the future in relation to income (56%), housing (40%) and most respondents also indicated MS had a negative impact on their lives, including their work life (73%) and social life (69%). Limited occupational support was forthcoming (17% were not provided with any support and only 27% report their work environment being adjusted to suit their needs). The ability to plan for the future and to understand the course of MS were highlighted as key priorities by respondents. A positive trend was observed between those who felt able to plan for the future and their knowledge of MS progression. The proportion of patients who report knowing a 'great deal' about MS prognosis and disability progression was low (16% and 9%, respectively), suggesting an increased role for clinical teams to provide information and education for PwMS. Communication between respondents and their clinical teams highlighted the role of specialist nurses for PwMS to provide holistic, informative support and demonstrated the level of comfort that PwMS have in discussing less clinical topics with these providers. CONCLUSION: This UK nationwide survey highlighted some of the unmet needs in disease education and communication in a subgroup of UK patients with RRMS, which can impact quality of life. Discussing goals and planning alongside prognosis and disability progression with MS care teams may enable people with RRMS not only to make informed treatment decisions, but also to self-manage and plan for the future, factors which are important to maintain independence.

Two multinational, observational surveys investigating perceptions of beauty and attitudes and experiences relating to aesthetic medical procedures.

BACKGROUND: Data on opinions and experiences of aesthetic medical procedures outside the United States and Western Europe are scarce. AIMS: This study aimed to survey users and non-users of aesthetic procedures in countries where this information is less readily available, to understand attitudes and perceptions relating to beauty. PATIENTS/METHODS: Two independent internet-based observational surveys were conducted. Survey 1: individuals from Colombia, Lebanon, Malaysia, Russia and Turkey who were 'users' or 'non-users' of aesthetic medical procedures. Survey 2: individuals from Colombia, Russia, Thailand, Turkey and the United Arab Emirates who were 'users' of non-surgical aesthetic treatments. RESULTS: Surveys 1 and 2 were completed by 300 and 160 individuals, respectively, most of whom were female (94.0% and 99%). Overall, respondents rated the eyes and smile as the most pleasing male and female facial features. Most participants (mean 82.6%; range 75%-100%) believed maintaining a healthy lifestyle was important for ageing gracefully, and over one-third (36.0%; 28%-47%) believed men age more gracefully than women. The emphasis respondents placed on the importance of physical attributes vs inner feelings, internal beauty and self-confidence varied between countries. Users were often more positive about aesthetic medical procedure outcomes than non-users. Adequate information, good physician communication (including managing treatment expectations), treatment recommendations based on patient need and good aftercare improved treatment satisfaction. CONCLUSIONS: The eyes and smile were key features of attractiveness, but maintaining a healthy lifestyle was consistently considered an important factor for ageing gracefully. Ensuring patients are well informed was a major determinant of treatment satisfaction.

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

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.