Development of an international COVID-19 specific healthrelated quality of life questionnaire, phase III pretesting and validation

Aims: This study aimed to develop, pilot-test and psychometrically analyse a patient-reported health-related quality of life questionnaire for patients with current or previous coronavirus disease (COVID-19). A disease-specific instrument was not available before, even though the patients experience a wide range of symptoms and reduced functioning. Method(s): We used an internationally recognized methodology for questionnaire development consisting of four phases. Adults with current or previous COVID-19, in hospital, nursing home or at home were eligible. In phase I, relevant issues were gathered through literature review, interviews with health-care workers and patients, and operationalized into items in phase II. In the current study, participants completed the questionnaire and were interviewed as part of phase IIIA and, in phase IIIB, participants completed a revised questionnaire and a debriefing form. Validity and reliability were assessed by correlation-based methods, Cronbach's alpha and intra-class correlation coefficient. Result(s): We enrolled participants from 11 countries within and outside Europe, 54 in phase IIIA and 371 in Phase IIIB. The mean time needed to complete the 80-item questionnaire in Phase IIIA was 16 min (range 4-45). Predefined criteria for retention were fulfilled for 71 items of which five needed some rewording. In phase IIIB, 80% of participants completed the 71-item questionnaire within 15 min, on paper (n = 175) or digitally (n = 196). The final questionnaire includes 61 items that fulfilled criteria for retention or were important to subgroups of patients. The item-scale correlations were>0.7 for all but nine items;three of these were changed. The internal consistency (alpha range 0.68-0.92) and test-retest (all but one scale>0.7) results were acceptable. The final scale structure of the Oslo COVID-19 quality of life (QLQ) weekly (W) 61 consists of 15 multi-item scales and six single items covering e.g. acute and long-term physical symptoms, psychological distress, and physical, social functioning. Patient representatives expressed satisfaction with the content of the questionnaire. Conclusion(s): COVID-19 is a disease with a pleomorphic symptomatology. In addition to many items assessing symptoms, multiple functional items were included. The Oslo COVID-19 QLQ-W61 is a cross-cultural instrument, now ready for use in research and clinical practice.

ASSESSING THE EFFECTIVENESS OF READY STEADY GO-PEEER PROJECT YOUTH WORK IN MEETING THE PSYCHOSOCIAL NEEDS OF CHILDREN AND YOUNG PEOPLE

BACKGROUND: Studies show that young people (YP) with chronic kidney disease do less well than their well peers in terms of mental health and employability. In the UK 30% of YP on renal replacement therapy have mental health issues compared to 15% of the general population and more are unemployed compared with their well peers. Many of the issues start in childhood as studies show that children with chronic kidney disease have significant psychosocial issues including: • Depression • Anxiety • Educational difficulties • Relationship issues • Lowself-esteem • Social isolation, family dependency • Professional restriction To address these issues, we developed the PEEER project to help improve Patient Empowerment, self-Esteem, Employability and Resilience. • PEEER brings YP together to participate in fun activities to help build selfesteem, develop an 'I can do' attitude, build a peer support group and reduce the sense of isolation patients feel. • PEEER offers a formal peer support mentorship and peer ambassador programme for those who wish to participate. Helping others will help the mentors and their peers by improving the self-esteem and psyche of both parties. PEEER offers the Duke Of Edinburgh Award and ASDAN to provide a range of nationally approved qualifications based around the development of individual and social skills leading to improved chances of employment. • Volunteering is an integral part of PEEER that helps to strengthen and improve self-esteem. • PEEER directly supports YP learn digital skills so they can develop appropriate information resources to help other young people, families and healthcare professionals. Pre-coronavirus disease (COVID-19) PEEER youth worker support was delivered face-to-face (F2F) in a 1:1 setting or group sessions in the hospital, youth spaces, or educational settings. With the onset of lockdown due to the COVID-19 pandemic from 23 March 2020 PEEER youth worker support was adapted to be delivered virtually on the ZOOM platform to meet the needs of CYP. AIMS: To assess the effectiveness of PEEER youth work project in meeting the psychosocial needs of children and young people with kidney disease when delivered virtually compared with F2F. METHOD: Group 1: Pre-COVID-19 lockdown: 1 January 2020-23 March 2020 CYP and their families received youth worker support F2F. Group 2: During COVID-19 lockdown: 23 March 2020-31 December 2020 youth work was delivered virtually. CYP in Groups 1 and 2 received 1:1 sessions, fun group activities and workshops. Feedback was collected on the effectiveness of these sessions. RESULTS: CYP: Group 1 n = 105. Group 2 n = 639. In Group 2 there was a 102% increase/month in CYP accessing PEEER events. In both Groups, 100% said they enjoyed the sessions, would like to attend future sessions. CYP in both Groups felt part of a friendship group, said the sessions allowed them to socialize with their peers. CYP in both Groups felt more confident, more independent and good about themselves. (See Table 2.) CONCLUSION: PEEER youth worker support is effective and can meet the psychosocial needs of CYP when delivered virtually and F2F. More work is needed on a hybrid approach of F2F and virtual delivery. (Figure Presented).

Pedi-R-MAPP: The development of a nutritional awareness tool for use in remote paediatric consultations using a modified Delphi consensus.

BACKGROUND & AIMS: The Remote Malnutrition Application (R-MAPP) was developed during the COVID-19 pandemic to provide support for health care professionals (HCPs) working in the community to complete remote nutritional assessments, and provide practical guidance for nutritional care. The aim of this study was to modify the R-MAPP into a version suitable for children, Pediatric Remote Malnutrition Application (Pedi-R-MAPP), and provide a structured approach to completing a nutrition focused assessment as part of a technology enabled care service (TECS) consultation. METHODS: A ten-step process was completed: 1) permission to modify adult R-MAPP, 2) literature search to inform the Pedi-R-MAPP content, 3) Pedi-R-MAPP draft, 4) international survey of HCP practice using TECS, 5) nutrition experts invited to participate in a modified Delphi process, 6) first stakeholder meeting to agree purpose/draft of the tool, 7) round-one online survey, 8) statements with consensus removed from survey, 9) round-two online survey for statements with no consensus and 10) second stakeholder meeting with finalisation of the Pedi-R-MAPP nutrition awareness tool. RESULTS: The international survey completed by 463 HCPs, 55% paediatricians, 38% dietitians, 7% nurses/others. When HCPs were asked to look back over the last 12 months, dietitians (n = 110) reported that 5.7 ± 10.6 out of every 10 appointments were completed in person; compared to paediatricians (n = 182) who reported 7.5 ± 7.0 out of every 10 appointments to be in person (p < 0.0001), with the remainder completed as TECS consultations. Overall, 74 articles were identified and used to develop the Pedi-R-MAPP which included colour-coded advice using a traffic light system; green, amber, red and purple. Eighteen participants agreed to participate in the Delphi consensus and completed both rounds of the modified Delphi survey. Agreement was reached at the first meeting on the purpose and draft sections of the proposed tool. In round-one of the online survey, 86% (n = 89/104) of statements reached consensus, whereas in round-two 12.5% (n = 13/104) of statements reached no consensus. At the second expert meeting, contested statements were discussed until agreement was reached and the Pedi-R-MAPP could be finalised. CONCLUSION: The Pedi-R-MAPP nutrition awareness tool was developed using a modified Delphi consensus. This tool aims to support the technological transformation fast-tracked by the COVID-19 pandemic by providing a structured approach to completing a remote nutrition focused assessment, as well as identifying the frequency of follow up along with those children who may require in-person assessment.

COVID-19: Experiences of lockdown and support needs in children and young adults with kidney conditions

Background During the initial COVID-19 pandemic, young United Kingdom (UK) kidney patients underwent lockdown and those with increased vulnerabilities socially isolated or 'shielded' at home. The experiences, information needs, decision- making and support needs of children and young adult (CYA) patients or their parents during this period is not well known. Objectives To understand the concerns and decision-making in CYA during the first lockdown, and perform subgroup analysis on shielded vs non-shielded patients Methods UK wide online survey co-produced with patients was conducted in May 2020 among CYA aged 12-30, or parents of children aged <18 years with any degree of chronic kidney disease. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted. Results 118 CYA (median age 21) and 197 parents of children (median age 10) responded. Predominant concerns from CYA were heightened vigilance about viral (68%) and kidney symptoms (77%) and detrimental impact on education or work opportunities (70%). Parents feared the virus more than CYA (71% vs 40%), that their child would catch the virus from them (64%) and adverse impact on other children at home (65%). CYA thematic analysis revealed: strong belief of becoming seriously ill if they contract COVID-19, lost educational opportunities, socialisation, and career development, and frustration at public for not following social distancing rules. Positive outcomes included improved family relationships and community cohesion. Only a minority (14-21% CYA and 20 - 31% parents, merged questions) desired more support. Subgroup analysis identified greater negative psychological impact in the shielded group. Conclusions This is the first study specifically surveying CYA with kidney conditions and their parents' experience of the COVID-19 pandemic during lockdown. We found substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making.

We Need to Know: A Call for Interdisciplinary Education on COVID-19.

COVID-19 disrupted numerous disciplines which led to widespread misinformation on the virus. Thirteen students from across the USA designed a web-based conference, or "webinar," to minimize the misinformation among student populations. Professionals presented the current and possible future impacts of COVID-19 in their respective fields. Pre- and post-conference surveys were administered to the attendees to gauge the impact of the conference. Survey results demonstrated increased knowledge and a lower degree of feeling overwhelmed by COVID-19 information overall, indicating a niche use for webinars during the COVID-19 pandemic and beyond.