487 NOTTINGHAM (N-ICE) CREAM-A MORE NUTRITIOUS, PALATABLE AND PREFERRED HIGH PROTEIN, VITAMIN D FORTIFIED VANILLA ICE CREAM-A STEP TOO FAR?

Introduction Oral Nutritional Supplement (ONS) drinks are commonly used to support nutritional intake in older people, however these are poorly consumed and frequently wasted. Fortified ice-cream offers a more acceptable ONS. Methods In collaboration with the University of Nottingham, Department of Food Sciences, we developed a high protein, vanilla ice cream (20 g/120 mL serving), fortified with vitamin D (400 IU)-Nottingham Ice (N-ICE) Cream. An anonymised Google consumer survey was untaken amongst older patients from the Nottingham Osteoporosis Patient Support group. We evaluated (on a rating scale of 1–10): Taste (1 unpleasant to 10 tasty), Mouthfeel (1 grainy to 10 smooth), Smell (1 unpleasant to 10 enticing), Appearance (1 off-putting to 10 inviting) and Colour (1 dull to 10 appealing) of the N-ICE Cream. Further comparison was made with an over-the-counter ONS drink Amyes Complete™ (similar in energy and protein content to N-ICE Cream). Results 32 participants completed the consumer survey. The mean (SD) age of the patients was 79.1 (4.5) yrs. The mean (SD) score out of 10 for Taste was 8.95 (1.02), Mouthfeel 9.14 (0.98), Smell 8.86 (1.06), Appearance 8.95 (1.12) and Colour 9.10 (1.14). Overall acceptability was 8.92 (1.18). 64% of the participants were able to consume all of the 120 mL tub, 22% ¾, 10% ½ and the remaining only ¼ (4%). 30/32 participants preferred the Taste, 29/32 Mouthfeel and 28/32 the Smell of N-ICE Cream, when compared to the ONS drink, and overall if given a choice, 30/32 (94%) of the participants preferred N-ICE Cream over the Amyes Complete™ ONS drink. The retail cost of Amyes Complete was £2.50 and 28/32 of the participants said they would be willing to pay the same amount for N-ICE Cream. Conclusion N-ICE Cream is highly acceptable, nutritious and preferred by the consumer group evaluated when compared to an ONS Amyes Complete™ drink.

Patient-reported barriers to online meetings: The case of a myeloma support group in western Kenya in the era of COVID-19.

e24036 Background: Multiple myeloma is a chronic progressive disease that calls for extended survivorship support post-diagnosis. Pre- COVID-19, the AMPATH Multiple Myeloma Program had created support groups for myeloma survivors and their caregivers that regularly met for health education, emotional support, and social opportunities. With the enforcement COVID-19 prevention and control protocols physical support group meetings became impossible. The program shifted to the online platform to sustain peer to peer support for myeloma patients and caregivers. We aim to describe challenges faced with online patient support group meetings as this has not been well documented in a resource-constrained setting. Methods: Myeloma patients and caregivers at Moi Teaching and Referral Hospital were contacted and a meeting date and time agreed. Participants were briefed on how to download and operate the zoom application in preparation for online meetings. A meeting link was shared with the expected attendees and a reminder sent two days before a meeting. Support group meetings were held for different groups among them myeloma survivors and caregivers. The meeting sessions were led by healthcare professionals – hematology consultants, social workers, nutritionist and psychosocial counsellors. Peer-to-peer sessions were also held. Results: Six online meeting sessions were held between June 2020 and December 2020. A total of 199 participants were expected to join the six different meetings but a low meeting turn-out of 25.6% was experienced. Participants were later contacted to unravel the reasons for a low turn-out. A total of 129 participants were contacted of which 88 responded. Out of the 88 respondents, 29% reported a tight work schedule, 25% short time meeting alerts, 20% did not have access to smartphones, and 8% had poor internet connectivity and another 8% reported no internet data bundles to connect to the internet. Conclusions: Low attendance of online meetings was observed. Participants cited scheduling and internet access as major obstacles to attending online support group meetings. Improved access to the internet through smartphones, reliable internet connection, and affordable data are needed in underserved communities to fully unlock the benefits of virtual platforms namely cost savings and effective information sharing.

Living with food allergy: What this means for children

Health-related knowledge, skills and attitudes that translate to behaviours are important foundations for healthy living. However, deficiencies in any one of these factors have the potential to impact quality of life. This study investigates how Australian children perceive and manage their food allergy as they transition through childhood onto adolescence. To measure this, children aged 12 years and under completed an online survey [under 8 years and 8–12 years] on knowledge, skills and attitudes. Although recruitment involved advertisements to over 700 Australian pre-schools, 44 allergy specialists and multiple representations to the patient support group, Allergy & Anaphylaxis Australia, completion relied on parental notification and/or guidance. Of the 139 participants recruited, 114 commenced the survey with 65 participants under 8 years (58%) and 49 between 8 and 12 years. Results showed participants recognised different ways to keep safe with children under 8 years ( N = 65) 100% cognisant of the need to check with ‘Mum/Dad’ or teachers if they could safely eat food as well as the importance of not swapping lunches, while there was a slight change in compliance for those aged 8–12 years as three (6.1%, n = 3/49) children did not see the necessity of asking an adult/teacher if a food item was safe to eat. Older children were also less likely to tell friends about their food allergy even if they thought they were having an allergic reaction, despite children under 8 years more likely to feel different to friends (38%, n = 24/64) compared to those aged 8–12 years (31%, n = 14/45). Although both groups disliked parents’ fussing, for children under 8 years, there was a strong association between this and ‘feeling different to friends'. Results from this study highlight the importance of normalising food allergy at home and in the community, so children are confident in telling others about their food allergy.

P016 When and how to deliver advice about self-management: local observations from the National Early Inflammatory Arthritis Audit

Background/Aims The National Early Inflammatory Arthritis Audit (NEIAA) provides the opportunity for rheumatology services to benchmark the care they provide against NICE quality standards (QS) 33. During the first year of the audit our focus, after being identified as an outlier, was on improving performance against QS2 and specifically reducing waiting times. This project assessed compliance against QS4: patients with rheumatoid arthritis (RA) are offered educational and self-management activities within 1 month of diagnosis. Methods Data submitted to the NEIAA online tool during the second year of the audit were downloaded for analysis. Results were presented initially to our National RA Society (NRAS) Patient Support Group and then together with feedback from the patients, to the Rheumatology Multi-Disciplinary Team. Driver diagrams were developed and areas for improvement identified. Results In total, 268 patients were recruited to the audit in year 2; 73 (27%) had confirmed RA and were included in this analysis. Follow-up data at 3 months was available for 56 patients (77%). Characteristics were: mean age 58 years (range: 19-88), 47 (64%) female, 34 (47%) working and 11 (15%) smoked. Forty-one patients (56%) started DMARD therapy within 6 weeks of referral. All patients with RA received written information at baseline about their condition. However, only 39 patients (71%) were documented to have been provided with advice about self-management at their 3-month follow-up. Feedback from the NRAS Group highlighted a number of important considerations. Firstly, that information about self-management needs to be given to the patient at the right time. Patients need to be ready to take advice on board and to have come to terms with their diagnosis. For many, trying to do this in the first 3 months of diagnosis was felt too soon. Information needs to be made available in different formats and tailored to the individual. Patients valued speaking to someone with a lived experience and felt this was more powerful than speaking to a healthcare professional to understand about self-management. Driver diagrams highlighted areas for improvement which included the importance of the team agreeing what is meant by self-management, using a patient activation measure to determine if the patient is ready to take on board this information, exploring different formats of delivery and utilising expert patients. Conclusion The NEIAA has again enabled the team to identify further areas for improvement. Involving patients in the discussion has provided a valuable insight into how we look to support our patients to live with their condition. It has also led us to question whether the QS is right to support that self-management advice is offered to patients within 1 month of diagnosis. Disclosure E. MacPhie: Other; EM is the secretary of the North West Rheumatology Club, these regional meetings have been funding by an unrestricted educational grant from UCB and are now sponsored by Abbvie. L. Ashcroft: None. J. Brazendale: None. N. Foreman: None. S. Gilbert: None. C. Greenall: None. S. Horton: None. I. Lewis: None. A. Madan: None. C. Rao: None. S. Fish: None.

The impact of COVID-19 on children with oesophageal atresia and/or tracheo-oesophageal fistula (OA/TOF)

ABSTRACTPurposeThe COVID-19 pandemic has resulted in a global health crisis of unparalleled magnitude. The direct risk to the health of children is low. However, disease containment measures have society-wide impacts. This study explored the pandemic experiences of parents of children with oesophageal atresia/tracheo-oesophageal fistula in the UK.DesignAn online forum was conducted using a private group on Facebook, in collaboration with a patient support group. Thematic analysis was used to identify key themes.ResultsThe online forum ran between 7th November-18th December 2020 with 109 participants. Themes related to healthcare and non-healthcare impacts. Parents experienced changes and limitations to healthcare access, anxiety regarding health risks, “collateral” damage to well-being because of isolation and an impact on finances and employment. Parents described a transition from worry about direct health risks to concern about the impact of isolation on socialisation and development. A process of risk-benefit analysis led some to transition to a more “normal life”, while others continued to isolate. Benefits to their child’s health from isolation, positive experiences with remote healthcare and a gradual easing of anxiety were also identified.Implications and relevanceThis study highlights the wide-ranging impact of the COVID-19 pandemic on children and their families. Although focussed on oesophageal atresia/tracheo-oesophageal fistula, the emerging themes will be relevant to many children with complex, chronic health conditions. There are implications for healthcare delivery, including telehealth, during and after the pandemic period. Accurate and consistent messaging is required. Third sector organisations are ideally positioned support this.

Using pre-existing social networks to determine the burden of disease and real-life needs in rare diseases: the example of Thygeson's superficial punctate keratitis

Background Thygeson’s superficial punctate keratitis (TSPK) is a rare and still poorly understood disease of the ocular surface, responsible for recurrent episodes of photophobia and eye pain. While TSPK is considered as a benign condition, a subset of patients has frequent recurrences or even chronic disease, two situations in which there are currently no therapeutic guidelines. We used a preexisting Facebook TSPK patient support group to assess the clinical journey and the burden of disease of TSPK. Results An online survey was sent to the patient support group. The first part of the questionnaire gathered information on demographics and the patient’s clinical journey [diagnostic modalities, symptoms, duration and frequency of recurrent episodes (RE), efficacy and tolerance to treatments]. The second part focused on quality of life (QoL) using the Ocular Surface Disease-QoL (OSD-QoL) questionnaire. Seventy-two patients out of 595 members of the support group completed the questionnaire during the 3-months study period. Eighty percent of patients developed symptoms before 30 years old, and 47% reported a delay in the diagnosis above 1 year. Sixty percent of patients reported over 5 RE yearly, and 18% of RE lasted more than 3 months. Forty percent of all patients used cyclosporine eyedrops (50% of those with > 5 episodes/year) and it was perceived as effective by 72% of these patients. The impact on daily life activities was judged as severe by 22% of patients, while 38% reported reduced professional activity and 80% were deeply saddened by their eye condition. Conclusion TSPK patients may present with frequent recurrences and/or chronic disease, that result in a severe impact on QoL, and an off-label use of topical immunomodulatory eye drops, suggesting the urgent need for controlled studies. The utility of using social networks for rare ophthalmic disease research includes, faster data collection, data from patients across the globe, and also raises relevant questions about their real needs.

Best Practices in Specialized Amyloidosis Centers in the United States: A Survey of Cardiologists, Nurses, Patients, and Patient Advocates

Background: Because transthyretin amyloid cardiomyopathy (ATTR-CM) poses unique diagnostic and therapeutic challenges, referral of patients with known or suspected disease to specialized amyloidosis centers is recommended. These centers have developed strategic practices to provide multidisciplinary comprehensive care, but their best practices have not yet been well studied as a group. Methods: A qualitative survey was conducted by telephone/email from October 2019 to February 2020 among eligible healthcare providers with experience in the management of ATTR-CM at US amyloidosis centers, patients with ATTR-CM treated at amyloidosis centers, and patient advocates from amyloidosis patient support groups. Results: Fifteen cardiologists and 9 nurse practitioners/nurses from 15 selected amyloidosis centers participated in the survey, with 16 patients and 4 patient advocates. Among participating healthcare providers, the most frequently cited center best practices were diagnostic capability, multidisciplinary care, and time spent on patient care; the greatest challenges involved coordination of patient care. Patients described the “ideal” amyloidosis program as one that provides physicians with expertise in ATTR-CM, sufficient time with patients, comprehensive patient care, and opportunities to participate in research/clinical trials. The majority of centers host patient support group meetings, and patient advocacy groups provide support for centers with physician/patient education and research. Conclusions: Amyloidosis centers offer comprehensive care based on staff expertise in ATTR-CM, a multidisciplinary approach, advanced diagnostics, and time dedicated to patient care and education. Raising awareness of amyloidosis centers’ best practices among healthcare providers can reinforce the benefits of early referral and comprehensive care for patients with ATTR-CM.