A Pilot Exploratory Study to Form Subgroups Using Cluster Analysis of Family Needs Survey Scores for Providing Tailored Support to Parents Caring for a Population-Based Sample of 5-Year-Old Children with Developmental Concerns

In a population-based developmental screening program, healthcare providers face a practical problem with respect to the formation of groups to efficiently address the needs of the parents whose children are screened positive. This small-scale pilot study explored the usefulness of cluster analysis to form type-specific support groups based on the Family Needs Survey (FNS) scores. All parents (N = 68), who accompanied their 5-year-old children to appointments for formal assessment and diagnostic interviews in the second phase of screening, completed the FNS as part of a developmental questionnaire package. The FNS scores of a full dataset (N = 55) without missing values were subjected to hierarchical and K-means cluster analyses. As the final solution, hierarchical clustering with a three-cluster solution was selected over K-means clustering because the hierarchical clustering solution produced three clusters that were similar in size and meaningful in each profile pattern: Cluster 1—high need for information and professional support (N = 20); cluster 2—moderate need for information support (N = 16); cluster 3—high need for information and moderate need for other support (N = 19). The range of cluster sizes was appropriate for managing and providing tailored services and support for each group. Thus, this pilot study demonstrated the utility of cluster analysis to classify parents into support groups, according to their needs.

Research and development of needs organizations in information

In today's rapidly changing environment, the ability of organizations to sense these changes and respond appropriately to them in order to maintain successful functioning is relevant. An important role in any organization is played by the information management process, which provides the organization with timely and reliable data. The basic capabilities that support the organization's ability to search, acquire, process and use relevant information for the organization are investigated. The technology of development of the subprocess of managing the need for information and a set of proposals for their implementation in the organization are proposed.

ON HEALTHCARE INSTITUTIONS AND PATIENTS INFORMATION EXCHANGE

The article discusses the problems of legal regulation between heaithcare institutions and patients. Due to the spread of the new Coronavirus infection, the need for information technologies active use in telemedicine has become more urgent, it enables to realize the information exchange of medical institutions in the form of doctors and patients.

Ten years of the China migrants dynamic survey: retrospective and prospects

This paper reviews the background of China’s decision to launch the “China Migrants Dynamic Survey” (CMDS), and examines the ideas and characteristics of CMDSs carried out annually from 2009 through 2018. The paper considers such aspects as project design, questionnaire design, sampling design, and survey implementation, and summarizes why it is necessary to carry out CMDS and the survey’s performance. Based on the need for information that drives migration surveys and research in the new era, and taking into account the experience gained from previous surveys, this paper attempts to set forth several issues that need to be taken into consideration in the design and implementation of future surveys of migrants.

FUTURUM-EXACTUM: A VERB FORM OF WRITTEN VEPSIAN THAT IS NOT TAKEN INTO ACCOUNT IN ITS DESCRIPTIONS

The article discusses the use of an analytical verb form of the linneb tehtud type in written Vepsian, that consists the 3 person singular form of the verb linneb ‘will’ and the passive past participle on -tud/-dud (in most cases) and is a calque from a similar Russian construction будет сделан (-a, -o). The relevance of the research is determined by the need to bring the information in the grammatical descriptions of the written Vepsian language in line with the real picture of the functioning of the Vepsian written norm, and to more accurately codify this idiom as written. The material is the texts in different styles originally written in Vepsian (journalistic) or translated into it (legal, artistic). The research confirms the hypothesis of the existence of an analytical verb form in the written Vepsian language that is not taken into account by grammatical descriptions, analyzes the detected examples of its use, and reveals the features of its structure and functioning against the background of closely related Finnic languages (Finnish, Votic, Ingrian). The article also discusses the place of this analytical form of written Vepsian among similar verb forms of Vepsian grammar and substantiates the non-identity of futurum-exactum to passive forms of the future tense ending in -škatas in the Vepsian language. It justifies the need for information about this verb form in future grammatical descriptions of the written Vepsian language.

POS1476-HPR THE NEED FOR INFORMATION AMONG PATIENTS WITH ANCA ASSOCIATED VASCULITIS DIFFERS BETWEEN GROUPS

Background:Being diagnosed with ANCA associated vasculitis (AAV) can be a frightening experience and means facing changes that involves adapting to new situations1. Patients that are provided adequate information are better equipped to make well informed decisions regarding their care and stay compliant to the treatment plan. In order to provide adequate patient-centered information at the appropriate time and to identify those who may need extra support, the information needs must be explored2. There have been several studies on the information needs of rheumatological patients, although very few studies for patients with AAV.Objectives:The aim of this study was to explore what information patients with AAV need from their rheumatological team and how it differs between groups (gender, disease duration).Methods:Men and women over 18 years were included through a consecutive sample from a Rheumatology or Nephrology Clinic at Karolinska University Hospital in Sweden during 2008-2019. Patients with all forms of AAV (GPA, MPA and EGPA), that had the Rheumatology clinic as primary contact, were included.The participants were given Educational Needs Assessment Tool (ENAT) that measures the patient’s information needs3. The initial question, ‘Do you need information right now about something that can help you with your rheumatic disease?’ is answered yes/no. ENAT then includes 7 domains (Managing pain, Movement, Feelings, Disease process, Treatments, Self-help measures and Support systems) each containing 4-7 items (4-point Likert scale, ’not at all important = 0’ to ‘extremely important = 3’). The total sum is divided by the maximum score and gives the percentage response of maximum score (0-100%), 0% meaning no information need and 100% highest information need. The responses are presented as “mean % of the domain score”. Independent-sample t-test was used to compare the mean between groups. One way ANOVA was used to compare the mean domain score between the different diagnoses and age groups.Results:178 individuals completed the questionnaire, equally divided by gender. Age ranged from 18-85, median 61. 33,7% had been diagnosed within 2 years.The mean total score was 56,8 % of the highest possible score (0-100%). The highest information need was found in the domains ‘Disease process’ (78,1%), ‘Self-help measures’ (68,5%) and ‘Treatments’ (63,6%) whereas lesser need for information was found in the domains ‘Managing pain’ (47,5%), ‘Support systems’ (46,5%) and ‘Movement’ (41,1%). The domain ‘Feelings’ was scored as moderate (55,5%).Those who acknowledge a present information need also scored significantly higher overall in all the domains. Disease duration and gender showed significantly affect the information need. Highest scores were found among women with a disease duration < 2 years with significant difference in 3/7 domains. Age, disease activity, diagnosis and social status did not affect the ENAT scores.Conclusion:Even though only 38% of participants stated a current need for information, the results indicate that there are certain areas that patients with AAV consider important to receive more information about. Special consideration needs to be taken to women with short disease duration since they were shown to have a significantly higher need for information.References:[1]Mooney, J., et al. (2013). ‘In one ear and out the other - it’s a lot to take in’: a qualitative study exploring the informational needs of patients with ANCA-associated vasculitis. Musculoskeletal Care, 11(1)[2]Ntatsaki, E., et al. (2014). BSR and BHPR guideline for the management of adults with ANCA-associated vasculitis. Rheumatology (Oxford), 53(12)[3]Hardware, B., et al. (2004). Towards the development of a tool to assess educational needs in patients with arthritis. Clinical Effectiveness in Nursing, 8(2)Disclosure of Interests:None declared

N03 Information flow experiences during COVID-19 in IBD patients: a prospective observational study

Background During the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic, several patients contacted members of the IBD team with coronavirus disease 2019 (COVID-19) related questions. Some patients intended to cancel scheduled IBD clinic outpatient visits or endoscopic examinations and/or stop or postpone their medication. We surveyed the need for information by IBD patients during the SARS-CoV-2 pandemic and the role of the IBD team in this regard. Methods We performed an anonymous survey at the IBD department of our tertiary referral center. The questionnaire contained 15 closed questions, including on basic demographic data, medication use, testing for COVID-19, information sources, and intention to stop or postpone medication or follow-up. The questionnaire was available to all adult patients attending the IBD outpatient clinic and infusion unit from July 1st until October 30th 2020. All questionnaires were collected before the second COVID-19 wave. Patients on subcutaneous medication that did not attend the IBD clinic during these months were contacted via e-mail. Results We collected 965 questionnaires. The majority of patients (44.3%) was 18–40 years old. There were more patients with Crohn’s disease (66%) than ulcerative colitis (32%) and IBD unclassified (2%). Demographics and medication use are presented in table 1. A third of the patients (31.7%) was tested for SARS-CoV-2, of whom 8.3% tested positive. Twenty-six percent of patients considered they had higher need for information about COVID-19 than the general population. News websites were a source of information about COVID-19 for 52.5% of patients, followed by hospital websites (43.8%), direct contact with the IBD physician (24.6%), direct contact with the IBD nurse (23.1%), and state sponsored websites (20.9%). In fact, 35.9% of patients contacted the IBD nurse since the start of the pandemic. The majority of patients reported they were satisfied by the information (80.5%) and/or reassured (85%) by the IBD nurse. Ten percent of patients had considered to stop IBD medication due to the pandemic, and 80% of these refrained to do so following the advice of the IBD nurses. Finally, 12.5% of the patients expressed true fear of hospital visits due to the pandemic, which was associated with female gender and higher need for information. Conclusion Treatment cessation and anxiety could be avoided by direct interaction with the IBD nurses and in particular with the IBD nurse as first point of contact for the patient. Patients with IBD may profit from an optimized information platform with scientifically correct information addressing the concerns of this specific population.