The patient's perspective on the burden of psoriasis: findings based on the ROCQ, an online survey.

Psoriasis is a common chronic skin disease, with well-characterised impact on quality-of life, however, no information is available on the lifetime impact of psoriasis on patients' lives. This descriptive cross-sectional web-based survey of patients with psoriasis, recruited from an online patient community, was conducted in France in 2021. Established questionnaires (Major Life-Changing Decision Profile-MLCDP, Dermatology Life Quality Index-DLQI, Hospital Anxiety and Depression Scale [HADS]), CAGE and BRIEF-COPE) were administered together with specially created questions. In total, 301 adult patients (mean age: 46.9 years; 56% women; mean disease duration: 20.3 years) participated in the study. The MLCDP showed that a mean of 9.4 life-changing decision items were affected; the most frequently cited domains being social life (n=258; 85.7%) and physical activity (n=226; 75.1%). In addition, 183 participants (60.7%) declared at least moderate impact of their psoriasis on their quality of life (score ≥6), with a median DLQI score of 7 [IQR: 3-13]. Impact on activities of daily living, such as social life, physical activities and marital relationships, was reported by over 50% of participants. Moreover, 107 (35.5%) declared being satisfied and 66 (21.9%) very satisfied with care. Over 50% of participants reported stigma related to being considered to have a contagious disease (n=182) or being unhygienic (n=163) and undesirable (n=167). Finally, 104 participants (34.6%) presented with clinically relevant anxiety and 32 (10.6%) clinically relevant depression (score ≥11) based on the HADS. Psoriasis carries a high psychological burden and has a strong long-term impact on social functioning.

The Burden of Cold Agglutinin Disease on Patients' Daily Life: Web-Based Cross-sectional Survey of 50 American Patients.

BACKGROUND: Cold agglutinin disease (CAD) is a rare disorder, affecting 15% of patients with autoimmune hemolytic anemia. Few studies have assessed CAD symptoms and their impact on daily life, but these studies did not address the patients' perspectives. OBJECTIVE: The aims of this study were to increase the knowledge about CAD through a patient-centric survey and to gain a better understanding of the burden of this disease. METHODS: We conducted an internet-based survey in September 2020 among American patients registered on the CAD Unraveled website and members of the Cold Agglutinin Disease Foundation. RESULTS: A total of 50 respondents were included in this study. Totally, 90% (45/50) of the patients reported having experienced fatigue. Fatigue was mainly reported on a daily basis, and approximately one-third of these patients (13/45, 29%) said that their fatigue was constant throughout the day. It has also been shown that CAD has a great impact on patients' physical well-being, emotional well-being, social life, and household finances. The disease varies over time, with or without symptoms. A total of 88% (44/50) of the patients reported previous episodes of the increased intensity or sensitivity of their CAD symptoms, with a mean of 4.5 (SD 5.4) episodes reported during the past year. More than half of the patients (27/50, 54%) considered their disease to be moderate or severe, and 42% (21/50) of the study group reported that their symptoms had worsened since the time of diagnosis. CONCLUSIONS: Our study has provided new data on CAD symptoms, particularly data on the importance and type of fatigue and the fluctuation of CAD symptoms.

Patients with Severe Uncontrolled Asthma: Perception of Asthma Control and its Management.

INTRODUCTION: The aim of our observational study was to understand how patients with uncontrolled severe asthma perceive asthma control, and to assess their views on the role of healthcare professionals (HCPs) and other stakeholders in asthma management. METHODS: In total, 200 patients with uncontrolled, severe asthma living in Canada, France, Germany, Italy, Spain, the UK, or the USA registered on the Carenity asthma community responded to a patient survey. RESULTS: While 62% of respondents indicated they knew a lot about asthma, they were not entirely satisfied with its control. The two most helpful tools considered important in long-term asthma control were centered on learning, with tips on asthma control (76%), as well as information on asthma and its causes (67%). Although asthma education programs were accessible to less than half (44%) of the respondents, 72% said they would find them useful. In the previous year, most patients (78%) consulted a specialist; however, while 54% of respondents participated in shared decision-making (SDM) concerning their treatment, less than one-third (29%) felt their opinion had been considered, and only 27% said it helped their HCPs to develop an informed action plan. However, 48% believed that SDM would help them feel more confident in achieving long-term control. Most respondents consulted emergency room doctors or nurse practitioners because of their uncontrolled severe asthma, finding them persuasive sources of information. Additionally, patient advocacy organizations (PAGs) were considered as a preferred (12%) or persuasive (6%) source by only a few patients. CONCLUSION: Most people with uncontrolled severe asthma were well informed about their disease. However, better information on asthma management would be useful for patients, with HCPs involved in this process. SDM was welcomed by respondents, but, to be successful, the patients' opinions should be taken into consideration when forming an asthma management action plan.

Immune-mediated inflammatory diseases and nutrition: results from an online survey on patients' practices and perceptions.

BACKGROUND: The central role of microbiota and the contribution of diet in immune-mediated inflammatory diseases (IMID) are increasingly examined. However, patients' perspectives on nutrition and its impact on their disease has not received a lot of attention. We aimed to directly collect information from patients with IMID about their dietary behaviors and their perceptions of the influence of nutrition on their disease. METHODS: Adult patients with rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, Crohn's disease, ulcerative colitis or psoriasis registered in an online patient community were invited to participate in the study and complete an online self-administered questionnaire. We assessed patients' dietary knowledge and choices by collecting information on the diet regimens they were following or recommended and their perceptions of the diet and its consequences on their disease. RESULTS: Fifty patients per target disease were included with a mean age of 48.1 years (95%CI 46.7-49.6). Other sociodemographic and clinical characteristics varied across the diseases. Since diagnosis, 44% of the patients changed their eating habits, mainly patients with inflammatory bowel disease with 69% of these making the change on their own initiative. Patients who did not change their diet habits reported not having received nutritional advice from their healthcare professionals (HCP) in 69% of the cases. The perceived impact of nutrition on their symptoms was mixed (overall 74% of the patients reported positive consequences and 60% negative ones) and varied across the diseases. Patients with psoriasis only experienced positive consequences from changing their diet, such as reduction of stress and improved mental health, while patients with Crohn's disease reported more negative effects such as increased fatigue and disturbed sleep. Patients with rheumatic diseases and ulcerative colitis reported weight loss and better physical fitness, but also increased fatigue. CONCLUSIONS: Even if differences exist across diseases, the importance of nutrition and its potential positive role in symptom management is acknowledged by the majority of the patients. However, there is a need and a demand from patients to receive more dietary advice. Developing therapeutic education tools on nutrition for people with IMID and involving patients' organizations would provide useful information and encourage communication between HCP and patients.

Impact of the COVID-19 Pandemic on Patients Affected by Non-Communicable Diseases in Europe and in the USA.

An international online patient community, Carenity, conducted a patient study in two independent waves among adults affected by non-communicable diseases (NCDs) in Europe and in the United States of America (USA). The study aimed to assess the real time impact of the coronavirus disease 2019 (COVID-19) on the medical conditions of patients with NCDs, their access to health care, and their adaptation to daily life as well as to describe their sources of information on COVID-19 and their needs for specific information and support. During the pandemic, 50% of the patients reported a worsening of their medical condition, and 17% developed a new disease. Additionally, 26% of the respondents reported an impact of the pandemic on regular/long-term treatment intake. 54% of the patients felt very or completely socially isolated and reported a strong impact of the COVID-19 pandemic on their stress level and state of mind, with higher levels observed in the USA compared to Europe. 59% of the respondents wished to have received additional information regarding the risks associated to their medical condition during the pandemic. Television was the most used source of information, whereas physicians were the most trusted one. This study describes the substantial impact of the COVID-19 pandemic on NCD patients.

Patient perspectives on the therapeutic profile of botulinum neurotoxin type A in cervical dystonia.

BACKGROUND: Botulinum neurotoxin type A (BoNT-A) is an effective pharmacological treatment for the management of cervical dystonia (CD) that requires repeated administration at variable intervals. We explored patient perceptions of the impact of CD and the waning of BoNT-A therapeutic effects. METHODS: An internet-based survey was conducted through Carenity, a global online patient community, from May to September 2019. Eligible respondents were adults with CD who had ≥ 2 previous BoNT-A injections. RESULTS: 209 respondents (81% females; mean age of 49.7 years) met the screening criteria. The mean BoNT-A injection frequency was 3.9 injections/year. The mean reported onset of BoNT-A therapeutic effect was 11.7 days and the time to peak effect was 4.5 weeks. Symptom re-emergence between injections was common (88%); the time from injection to symptom re-emergence was 73.6 days (~ 10.5 weeks). Treatment was not reported to completely abolish symptoms, even at peak effect. However, symptom severity was rated (0 = no symptoms; 10 = very strong symptoms) as lowest at the peak of treatment effects (mean scores ~ 3/10), increasing as the effects of treatment start waning (~ 5.5/10) and was strongest one day before the next session (~ 7-8/10). The impact of CD on quality of life followed the same 'rollercoaster' pattern. CONCLUSIONS: This survey highlights the burden of CD symptoms, even in patients undergoing regular treatment. Symptom re-emergence is common and has significant impact on daily activities and quality of life. Greater awareness of the therapeutic profile of BoNT-A treatment should lead to better informed therapeutic discussions and planning.

Perception of oral corticosteroids in adult patients with asthma in France.

OBJECTIVE: Oral corticosteroids (OCS) are frequently used as relievers for acute asthma and controllers for severe asthma. However, the relief offered by OCS is counterbalanced by adverse effects. We aimed to describe how patients perceive OCS treatment benefits and risks, and how this could affect their adherence to the treatment. METHODS: Patients aged ≥18 years with asthma registered with Carenity, an online patient community, were invited to respond to a questionnaire containing 35 closed and 3 open questions to assess their asthma and perceptions of OCS. RESULTS: 268/300 respondents were receiving or had received OCS for asthma (58 for long-term use and 107 for short-term use). The mean age at diagnosis was 21.3 years. 66% had uncontrolled asthma (GINA control score 3 or 4). Although 42% perceived OCS to be efficacious, 46% mentioned adverse effects. Respondents were mostly satisfied with OCS (median = 7.0/10), particularly for efficacy (median = 8.0/10). Respondents reported having strategies to avoid OCS, mainly because of adverse effects. 26% of respondents had previously reduced or stopped OCS; this proportion was 22% for short-term OCS users and 36% for long-term users. 15% of the respondents not receiving long-term OCS would take the treatment without doing anything else if long-term OCS were prescribed; 42% would seek an alternative treatment. CONCLUSIONS: OCS for asthma is perceived efficient but associated with adverse effects. Patients seek alternative treatment.

Patient Perspectives on the Therapeutic Profile of Botulinum Neurotoxin Type A in Spasticity.

Background: Botulinum toxin-A (BoNT-A) injections are first-line treatment for adult spasticity. Prior patient surveys have reported that BoNT-A treatment improves quality of life but that symptoms usually recur before the next injection. We aimed to explore, in-depth, patient perceptions of the impact of spasticity and the waning of BoNT-A therapeutic effects. Methods: An internet-based survey was conducted through Carenity, an online patient community, from May to September 2019 in France, Germany, Italy, UK and USA. Eligible respondents were adult patients with spasticity due to stroke, traumatic brain injury (TBI) or spinal cord injury (SCI) who had ≥2 previous BoNT-A injections. Results: Two hundred and ten respondents (mean 47.2 years) met screening criteria and had their responses analyzed. Overall, 43% of respondents had spasticity due to stroke, 30% due to TBI and 27% due to SCI. The mean [95% CI] injection frequency for spasticity management was 3.6 [3.4-3.7] injections/year. Respondents described the time profile of their response to BoNT-A. The mean reported onset of therapeutic effect was 12.9 [12.1-13.7] days and the mean time to peak effect was 5.0 [4.7-5.4] weeks. Symptom re-emergence between injections was common (83%); the time from injection to symptom re-emergence was 89.4 [86.3-92.4] days. Muscle spasms usually re-emerge first (64%), followed by muscle stiffness or rigidity (40%), and limb pain (20%). Over half (52%) of respondents said they had lost their self-confidence, 46% experienced depression and 41% experienced a lack of sleep due to their spasticity symptoms in the past 12 months. Following a report of symptom re-emergence, the most common management approaches were to add adjunctive treatments (36%), increase the BoNT-A dose (28%), and wait for the next injection (26%). Seventy two percentage of respondents said they would like a longer lasting BoNT-A treatment. Conclusions: Patients with spasticity can expect a characteristic profile of BoNT-A effects, namely time lag to onset and peak effect followed by a gradual decline in the symptomatic benefits. Symptom re-emergence is common and has significant impact on quality of life. Greater patient/clinician awareness of this therapeutic profile should lead to better level of overall satisfaction with treatment, informed therapeutic discussions and treatment schedule planning.

Understanding Reasons for Treatment Discontinuation, Attitudes and Education Needs Among People Who Discontinue Type 2 Diabetes Treatment: Results from an Online Patient Survey in the USA and UK.

INTRODUCTION: Type 2 diabetes mellitus (T2DM) requires long-term treatment to achieve and maintain glycaemic control; however, up to 50% of people with T2DM discontinue treatment by 1 year. It is therefore important to understand the patient perspective of therapeutic adherence and persistence. METHODS: An online questionnaire was presented to people with T2DM in the USA and UK on PatientLive®, a platform of Carenity, an online patient community. Those who discontinued at least one T2DM treatment within the last 6 months answered open-ended questions aimed to assess the reasons for discontinuation, how discontinuation could have been prevented, and what would have improved the experience with the discontinued treatment. Thematic qualitative analysis was performed on respondents' answers to these questions. RESULTS: Oral antidiabetics were the most commonly discontinued treatments (93/161), followed by insulin (40/161) and glucagon-like peptide 1 receptor agonists (13/161). Main reasons for treatment discontinuation overall were side effects (57/161), mostly gastrointestinal side effects and weight gain. The second most reported reason was drug efficacy issues (42/161). Key factors stated to prevent discontinuation were an improved care pathway (45/161) and more efficacious treatments with fewer side effects (41/161). In the USA, treatment cost played an important role in discontinuation (14/89) and discontinuation prevention (12/89). More information about T2DM and associated treatments (56/161), help with T2DM management (24/161), and increased and informative patient-physician interaction (12/161) would have been helpful for many respondents in both countries, while some patients noted that no additional information would have been useful to improve their understanding and experience with their T2DM treatment (64/161). CONCLUSIONS: These results emphasise the need for focused medical education and improved communication to enhance patient experience and prevent treatment discontinuation. Understanding of attributes preferred by people with T2DM can help improve therapeutic adherence and outcomes with current medications, and guide development of future therapies.

Corrigendum: Patient Perspectives on the Therapeutic Profile of Botulinum Neurotoxin Type A in Spasticity.

[This corrects the article DOI: 10.3389/fneur.2020.00388.].