Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID.

BACKGROUND: Long-term health consequences following acute SARS-CoV-2 infection, referred to as post-COVID-19 condition or Long COVID, are increasing, with population-based prevalence estimates for adults at around 20%. Persons affected by Long COVID report various health problems, yet evidence to guide clinical decision making remains scarce. OBJECTIVE: The present study aimed to identify Long COVID research priorities using a citizen science approach and solely considering the needs of those affected. METHODS: This citizen science study followed an iterative process of patient needs identification, evaluation and prioritisation. A Long COVID Citizen Science Board (21 persons with Long COVID, and seven with myalgic encephalomyelitis/chronic fatigue syndrome) and a Long COVID Working Group (25 persons with Long COVID, four patients with myalgic encephalomyelitis/chronic fatigue syndrome and one relative) were formed. The study included four activities: three remote meetings and one online survey. First, Board members identified the needs and research questions. Second, Working Group members and persons affected by Long COVID (241 respondents, 85.5% with Long COVID, 14.5% with myalgic encephalomyelitis/chronic fatigue syndrome and 7.1% relatives) evaluated the research questions on a 1-5 Likert scale using an online survey. Then the Board gave feedback on this evaluation. Finally, Board members set the priorities for research through voting and discussion. RESULTS: Sixty-eight research questions were generated by the Board and categorised into four research domains (medicine, healthcare services, socioeconomics and burden of disease) and 14 subcategories. Their average importance ratings were moderate to high and varied from 3.41 (standard deviation = 1.16) for sex-specific diagnostics to 4.86 (standard deviation = 0.41) for medical questions on treatment. Five topics were prioritised: "treatment, rehabilitation and chronic care management", "availability of interfaces for treatment continuity", "availability of healthcare structures", "awareness and knowledge among professionals" and "prevalence of Long COVID in children and adolescents". CONCLUSIONS: To our knowledge, this is the first study developing a citizen-driven, explicitly patient-centred research agenda with persons affected by Long COVID, setting it apart from existing multi-stakeholder efforts. The identified priorities could guide future research and funding allocation. Our methodology establishes a framework for citizen-driven research agendas, suitable for transfer to other diseases.

Research shows that about one in five adults may experience lasting symptoms months after their initial coronavirus infection. Persons with Long COVID have various health problems and doctors often do not know their patients' most urgent needs. The project directly involved people with Long COVID who were asked to express, discuss and rank how research could meet their needs. For that, a Board and a Working Group were formed to take part in three online board meetings and one online questionnaire. In the meetings, the Board formulated 68 research questions, which fall into four research areas: (1) medicine, (2) healthcare services, (3) socioeconomics and (4) burden of disease. The Working Group and other persons affected by Long COVID ranked the importance of these 68 research questions using an online questionnaire. Most questions were ranked as somehow or very important, confirming the relevance of the selected research questions for patients with Long COVID. Finally, the Board selected its top five research topics: "treatment, rehabilitation and chronic care management", "availability of interfaces for treatment continuity", "availability of healthcare structures", "awareness and knowledge among professionals" and "prevalence of Long COVID in children and adolescents". This result will help prioritise and finance future research that is valued and needed by people with Long COVID.

Policy and Food Consumption: What Nutrition Guidelines Are Swiss Children Meeting and What Determines Adherence?

Objectives: To describe the adherence of the children to the Swiss Society for Nutrition (SSN) dietary guidelines, assess determinants of adherence, and compare these findings with a previous study in the same population. Methods: Data from 312 children ages 5-12 were collected through a survey and a 2-day food record. The associations of children- and parent-related factors with adherence of the children to guidelines were assessed by logistic regression analyses. Results: SSN guidelines were not met for any food category, although there were improvements: vegetables (4.5% in this study vs. 0% in the previous study), sweets, snacks, and soft drinks (SSD) (12.5 vs. 9.5%), and fruit (45.5 vs. 10.4%). Higher Body Mass Index (BMI) in children was associated with higher adherence to guidelines for protein intake. Higher parental BMI was associated with higher adherence to vegetables. Parental lower educational level was associated with higher adherence for cereal. Conclusion: Despite improvements since the last eating behavior assessment in this population, children consume too little fruit, vegetables, cereal, and milk and dairy products, and too much SSD and proteins. Further efforts are needed to promote healthy eating to children and achieve adherence to guidelines.

Nutrition in the context of the Sustainable Development Goals.

The 2030 Agenda for the Sustainable Development Goals (SDGs) represents a common framework of international cooperation to promote sustainable development. Nutrition is the key point for the SDG 2 'End hunger, achieve food security and improved nutrition and promote sustainable agriculture' and is an essential component for achieving many of the other targets: overall, the nutritional aspects of the SDGs aim to promote healthy and sustainable diets and ensure food security globally. While undernutrition is of minimal concern in the European Union Member States, trends in childhood obesity are still alarming and far from any desirable target. European food production systems have improved over the last years, with immediate impact on several environmental aspects; however, a comprehensive regulatory framework to fulfil the environmental and climate targets is still lacking. Policy actions at multinational level are needed to achieve global nutrition targets designed to guide progress towards tackling all forms of malnutrition while preserving the environment through virtuous food production and food systems.

Does additional support provided through e-mail or SMS in a Web-based Social Marketing program improve children's food consumption? A Randomized Controlled Trial.

BACKGROUND: The FAN Social Marketing program was developed to improve dietary and physical activity habits of families with children in Ticino, Switzerland. The aim of this study was to examine if the effects of the program on children's food intake differed by intervention group. METHODS: Effects of the FAN program were tested through a Randomized Controlled Trial. The program lasted 8 weeks, during which participants received tailored communication about nutrition and physical activity. Families were randomly allocated to one of three groups, where the parent received the intervention by the Web (G1), Web + e-mail (G2) or Web + SMS (G3). Children in all groups received tailored print letters by post. Children's food consumption was assessed at baseline and immediate post intervention using a 7-day food diary. Generalized linear mixed models with child as a random effect and with time, treatment group, and the time by treatment interaction as fixed effects were used to test the impact of the intervention. RESULTS: Analyses were conducted with a sample of 608 children. After participating in FAN the marginal means of daily consumption of fruit changed from 0.95 to 1.12 in G1, from 0.82 to 0.94 in G2, and from 0.93 to 1.18 in G3. The margins of the daily consumption of sweets decreased in each group (1.67 to 1.56 in G1, 1.71 to 1.49 in G2, and 1.72 to 1.62 in G3). The change in vegetable consumption observed from pre to post intervention in G3 (from 1.13 to 1.21) was significantly different from that observed in G1 (from 1.21 to 1.17). CONCLUSIONS: A well-designed Web-based Social Marketing intervention complemented with print letters can help improve children's consumption of water, fruit, soft drinks, and sweets. The use of SMS to support greater behavior change, in addition to Web-based communication, resulted only in a small significant positive change for vegetables, while the use of e-mail in addition to Web did not result in any significant difference. TRIAL REGISTRATION: The trial was retrospectively registered in the ISRCTN registry (ID ISRCTN48730279 ).

Is it better at home with my family? The effects of people and place on children's eating behavior.

The people and places children eat with can influence food consumption. This study investigates the people and places Swiss school-aged children ate with over a 7-day period and analyses the effects of eating at home with family on food consumption. Children completed a 7-day food diary documenting the foods they consumed, the people with whom they ate, and the place where they ate. Analyses were conducted for all meals and included 9911 meal occasions. Most meals (80.5%) were consumed at home with family. Generalized estimating equations were used to model the effects of the home-family dyad on the child's chance of consuming a certain food while controlling for age, gender and BMI of the child, education, nationality and BMI of the parent. Compared to eating in other dyads (e.g. school-peers or restaurant-family), eating in the home-family dyad was associated with higher consumption of vegetables (+66% and +142% at weekday lunch and dinner and +180% and +67% at weekend lunch and dinner), lower consumption of sweets (-45% and -49% at weekday lunch and dinner; -43% and -49% at weekend lunch and dinner), and fewer soft drinks (-37% and -61% at weekday lunch and dinner; -66% and -78% at weekend lunch and dinner). This study shows the positive influence of eating at home with the family on food consumption in a sample of Swiss children. Interventions and policies that encourage children and parents to eat together at home could serve as effective prevention against a poor diet.

I did eat my vegetables. Agreement between parent and child food intake diaries.

OBJECTIVE: To assess the level of agreement between children and their parents when reporting a child's food consumption. DESIGN: Cross-sectional study in which children and parents independently completed 7 d food diaries describing the foods and drinks the child consumed at every meal and snack. The association between child and parent reporting was assessed for nineteen food groups using Kendall's tau-b non-parametric correlations, Spearman's rank correlations, kappa coefficients and Lin's concordance measure of agreement. Results were also stratified by gender of the child and his/her grade at school. SETTING: Households in Ticino, Switzerland, April-June 2014. SUBJECTS: Two hundred and ninety-nine children aged 6-12 years and one of their parents participated, with 264 providing complete data (35 % completion rate). RESULTS: Results showed a high level of agreement between child and parent reporting. Spearman correlations ranged from 0·55 (sauces) and 0·57 (fatty meat) to 0·80 (fruit), 0·83 (starchy foods) and 0·84 (pastries). All nineteen Spearman correlations were significant at the 0·001 level. Kendall's tau-b correlations ranged from 0·44 (fat meat) to 0·81 (puff pastry). Kappa values showed low to high levels of agreement, ranging from 0·15 (sweets) to 0·77 (puff pastry). Lin's concordance correlation coefficients ranged from 0·39 (whole grains) to 0·86 (puff pastry). CONCLUSIONS: When assessing the eating behaviour of children using a 7 d food diary, children's reports might be as reliable as their parents'.