Living with food allergies: the experiences of adult patients and caregivers.

Background: Few studies have addressed how food allergy may impact differently on the daily lives of adults with food allergies and caregivers for food-allergic dependents. Objective: To explore similarities and differences in life experiences and unmet needs between individuals caring for a child with food allergy and adults with food allergy world-wide. Methods: Two multinational, virtual, interactive, moderated discussions of specific questions between respectively people with food allergies and caregivers for people with food allergies, with experienced clinicians participating. Results: Sixteen individuals living with food allergies and nine caregivers took part in the two roundtables. Food avoidance and antihistamines were the most common treatments for food-allergic reactions in both groups. Caregivers reported greater burden of disease on affected individuals and families than did adult patients. Adult panelists considered autoinjectors easy to use but caregivers reported additional emotional stress thinking about autoinjector use. Caregivers described an ever-present fear of inattention and of overlooking a risk factor for a severe reaction, whereas adult panelists showed a determination not to let their food allergies interfere with living their lives. Both groups had safety-conscious attitudes to treatments, but adult patients emphasized convenience while caregivers prioritized reduced severity of reactions and eliminated fear. Both groups confirmed the need for improved, trusted sources of information, and for resources and training programs for any new therapies. Conclusion: The interactive exchange provided insights into differences between adult patients and caregivers, notably in fear and confidence in daily life, severity of disease impact, and unmet needs for treatments.

Amblyopia-A novel virtual round table to explore the caregiver perspective.

PURPOSE: A survey aimed to capture the caregiver's perspective on the impact of amblyopia and its treatment on the child and family, as well as caregivers' views on the design and feasibility of clinical trials investigating dichoptic binocular therapies for amblyopia. METHODS: Parents of amblyopic children, patient advocates and healthcare professionals took part in a moderated, structured discussion on a novel virtual advisory-board platform. RESULTS: Seven parents of children with amblyopia, two patient organisation representatives, one ophthalmologist and one optometrist participated in the survey. A total of 645 posts were entered on the platform over a 14-day period in September 2021. There was widespread agreement that the management of amblyopia poses more of a burden on the child and family than the condition itself, with treatment burden accentuated when treatment is unsuccessful. Parents expressed uncertainty and frustration in relation to the duration of patching, success of patching and alternative treatment options, and felt there was inadequate readily available, easy-to-understand information on the condition. Parents reported that a new treatment for amblyopia, such as dichoptic binocular therapy using video games, should be safe, non-invasive and engaging compared with an eye patch. Treating at home, potentially for a shorter treatment duration, and with an entertaining game were the main reasons parents would join a clinical study with this type of novel therapy. However, due to a limited critical period treatment window, parents would feel more comfortable joining a clinical trial if traditional therapies were offered in conjunction with those under investigation. CONCLUSION: Patient perspectives and the role of caregivers in the acceptance of any interventional treatments are increasingly recognised. Understanding how amblyopia and its treatment impacts a child and family should be an important premise to guide therapy and evaluate treatment value, both in clinical trials and in routine medical practice.

Living with sarcoidosis: Virtual roundtable dialogue with patients and healthcare professionals.

BACKGROUND: Sarcoidosis is a multisystem disease, characterised by the infiltration of various organs by non-necrotising granulomas. The disease's heterogeneity complicates the study of patients' experiences. OBJECTIVE: To gather insight into life experiences, unmet needs and views on hypothetically emerging treatment options among patients living with sarcoidosis. METHODS: Multinational, virtual, interactive, moderated discussion of specific questions between people with sarcoidosis, with experienced clinicians participating. RESULTS: Nine patients with sarcoidosis from Australia, Denmark, Germany, Italy, Japan and the US, and three clinicians took part. All patients had pulmonary sarcoidosis, self-assessed as mild by five patients. The path to diagnosis was convoluted, with up to four physicians and a large number of tests involved. There was agreement that the process would be improved by earlier referral to specialists. The patients made a clear distinction between 'living with a condition' (adapting to the disease) and 'being ill'. The concept of remission was viewed sceptically as disease might develop in multiple organs. Panellists had a pragmatic attitude to therapies: side effects during a treatment course were accepted if overall symptoms improved. When considering hypothetical new therapies, improved quality of life (QoL) was the most important need; improved tolerability had lower priority. New therapies should be targeted on reducing disease progression and improving symptoms and QoL rather than corticosteroid withdrawal. CONCLUSIONS: The interactive exchange provided insights into the need for earlier specialist referrals, distrust of the concept of remission in sarcoidosis, and the need for therapies targeted on reducing disease progression and improving symptoms and QoL.

Living with presbyopia: experiences from a virtual roundtable dialogue among impacted individuals and healthcare professionals.

BACKGROUND: Presbyopia is a common progressive vision disorder characterised by an inability to focus on near objects. The emergence of newer treatment options in addition to spectacles or contact lenses highlights the importance of assessing patient/user preferences. METHODS: People with presbyopia and healthcare professionals (HCPs) took part in a moderated, structured discussion of specific questions on a virtual advisory-board platform. The objective was to better understand unmet needs and the experience of living with the condition. Closed and open questions were included. RESULTS: Nine individuals (age 40 to 70 years) with presbyopia participated, from Australia, China, France, Italy, Ireland, Japan and the US. One ophthalmologist and one optometrist represented the perspective of HCPs. Over two weeks, 621 posts were entered on the platform. There was widespread agreement that the often stated association between age and presbyopia was unfortunate. Some participants had developed presbyopia at 30-45 years of age. What is more, the association with age was seen as implying a natural process, reducing the incentive to treat. Instead there was a call for an action-oriented view of presbyopia as a condition which may be effectively treated in the future. All participants experienced dealing with presbyopia as burdensome, affecting quality of life to varying degrees. When considering new treatments, convenience was the most important factor. The option to administer drops when needed was considered favourable, but short-acting treatments may not reduce inconvenience compared with spectacles. Participants viewed a therapy that targets the underlying cause of the condition favourably compared with symptomatic treatment. Side effects would severely reduce the appeal of drops. For clinical trials in presbyopia, patient-reported outcomes should be mandatory and need adequately to capture quality of life. Studies in presbyopia must be designed to minimise the inconvenience to participants in order to counter the risk of high drop-out rates. CONCLUSIONS: The interactive format provided insights into living with presbyopia, particularly the negative impact on quality of life, subjects' openness to new therapies, and the need to move away from considering the condition an unavoidable and intractable consequence of ageing.

The term presbyopia describes the difficulty to focus the eyes on things nearby, due to stiffening of the eye lens. The condition often considered something which worsens with increasing age. Many people cope with presbyopia by wearing reading glasses or bifocals, but alternative treatments are being developed. This publication reports from a moderated discussion among people with presbyopia and healthcare professionals specialising in eye health. People with presbyopia strongly felt that it should not be seen as an inevitable effect of middle age, but as something which may be treated medically. They felt that reading glasses, bifocals and monovision lenses were a daily burden and did not fit with how they wanted to live their lives. When discussing possible medical treatments, the option to use drops instead of glasses to improve eye sight appealed to the participants, particularly if the drops acted on the mechanism behind the stiffened lens with effect over many weeks or months. Convenience was the key benefit the participants would look for when considering a new treatment. Importantly, drops must not have any undesirable effects such as burning. The roundtable discussion showed the need for both healthcare professionals and those living with presbyopia to take the condition seriously with an an action-oriented view towards better therapies in the future.