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Current transition management of adolescents and young adults with allergy and asthma: a European survey

Current transition management of adolescents and young adults with allergy and asthma: a European... Background: Transition from parent‑ delivered to self‑management is a vulnerable time for adolescents and young adults (AYA) with allergy and asthma. There is currently no European guideline available for healthcare professionals (HCPs) on transition of these patients and local/national protocols are also mostly lacking. Methods: European HCPs working with AYA with allergy and asthma were invited to complete an online survey assessing challenges of working with these patients, current transition practices and access to specific healthcare resources. Results: A total of 1179 responses from 41 European countries were collected. Most HCPs (86%) reported a lack of a transition guideline and a lack of a transition process (20% paediatric HCPs, 50% of adult HCPs, 56% HCP seeing all ages). Nearly half (48%) acknowledged a lack of an established feedback system between paediatric and adult medi‑ cal services. Many respondents never routinely asked about mental health issues such as self‑harm or depression and are not confident in asking about self‑harm (66.6%), sexuality (64%) and depression (43.6%). The majority of HCPs (76%) had not received specific training in the care of AYA although 87% agreed that transition was important for AYA with allergy and asthma. Conclusion: Although there was agreement that transition is important for AYA with allergy and asthma, there are crucial limitations and variations in the current provision of transition services across Europe. Standardisation of AYA management and specific training are required. This should improve management and continuity of care during adolescence and into adulthood to achieve the best healthcare outcomes. Keywords: Adolescent, Allergy, Healthcare professional, Transition, Young adult Introduction Allergy and asthma are amongst the most common chronic disorders. Furthermore, the prevalence and severity of allergic diseases and asthma continue to rise with adolescents and young adults (AYA)—those *Correspondence: g.c.roberts@soton.ac.uk between ages 11 and 25 [1–3]. It has been shown that Faculty of Medicine, University of Southampton, Southampton, UK AYA have higher rates of fatal anaphylaxis to foods [4] Full list of author information is available at the end of the article © The Author(s) 2020. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. 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Clin Transl Allergy (2020) 10:40 Page 2 of 15 and asthma deaths compared to younger children [5] During the last decade, a number of transition models partly due to risk taking behaviour and poor adherence. and guidelines have been proposed to address the organi- Moreover, AYA with food allergy (FA) have a lower qual- zation and process of transition. There are no conclusive ity of life (QoL) than AYA with other chronic conditions data on the superiority of one transition programme over [6]. These findings suggest that AYA with allergic condi - another [13]. The need for a multidisciplinary service tions require specialised resources and healthcare plans model integrating social support, education and non- to address their age- and disease-related needs. statutory services is well established [14] and exemplified Adolescence and young adulthood is an important by the recently published European Academy of Paedi- period of development with significant biological, psy - atrics consensus statement [15]. Furthermore, a num- chological and social changes [7]. As adolescents move ber of disease-specific programmes have been set up to towards adulthood, there is a need to evolve from being address the process of the transition such as in patients dependent on their parents/carers to becoming respon- with chronic digestive [16], rheumatic [17, 18], liver [8] sible and accountable for their own health and well-being and coeliac [19] diseases. as adults. This is independent of whether there are sepa - To our knowledge, there are currently no standard- rate paediatric and adult allergy clinics or one allergy ized policies and protocols on the transition of AYA clinic seeing all age groups. Transition has been defined with allergy and asthma in most European countries. as ‘active and evolving process that addresses the medi- Moreover, there are currently no international or Euro- cal, psychosocial, and educational needs of young peo- pean accepted guidelines available for HCPs working in ple as they prepare to move from child- to adult-centred this field. To develop best transition practices for AYA health care’ [8]. So it is not only about transfer of patient with allergic diseases across Europe, it is first necessary information and disease history to an adult healthcare to understand current transition care, as well as the bar- setting. Transition also, importantly, includes the provi- riers and facilitators HCPs face to implement quality of sion of the support that AYA with long-term allergic con- care. This paper describes the results of a pan-European ditions require to meet their needs to progress to being survey to assess the challenges of working with AYA, cur- independent adult patients. rent transition practices and access to specific healthcare Previous studies have shown that AYA and their par- resources to support transition. ents are mostly dissatisfied with their experience of the transition process. For instance, only 42% of AYA with Methods special healthcare needs had discussed transition care Study design with their healthcare professional (HCP) and only 41% A quantitative, online, cross-sectional survey was con- met the transition core outcomes such as whether HCP ducted. As no relevant validated questionnaire existed, had discussed transition to adult medical service, health the survey was developed by the members of the Euro- care needs, health insurance and had encouraged the pean Academy of Allergy and Clinical Immunology AYA to self-manage their disease [9]. AYA with sickle (EAACI) Adolescent and Young Adult Task Force after cell disease have voiced concern about the care they will a systematic literature review on the transition process receive in adult healthcare services, being worried about and challenges of the AYA with allergies. The study was leaving a familiar and trusted paediatric doctor [10]. A approved by the Ethics and Research Governance Com- recent systematic review on the challenges faced by AYA mittee at University of Southampton, United Kingdom. with allergy and asthma identified a large number of fixed and modifiable factors, including psychological, social/ Participants environmental, behavioural factors as well as the nature We invited HCPs managing AYA with allergy and of the patient-HCP relationship, that will influence self- asthma across Europe and members of the EAACI and/ management and ultimately health outcomes [11]. In or National Allergy Societies (NAS) within Europe who addition, a related systematic review assessed different were able to read English, German, French, Greek, Span- interventions for improving self-management and well- ish, Portuguese, Italian or Russian to participate in the being of AYA with asthma and allergies; many delivered survey. The potential survey population was approxi - improvements in patients with asthma although more mately 12,000 participants, the number of EAACI mem- robust evidence is required, especially for other allergic bers, in addition to members of the NAS. As it was not diseases [12]. Given this complexity we need to find ways possible to identify non-clinicians, the survey was sent for HCPs to facilitate the smooth transition process from to all EAACI members and it was highlighted in the invi- a paediatric to adult format of medical care and inform tation email that the survey was only for HCPs. Partici- transition guidelines. pants were asked to fill in the survey only once. A margin of error for answers to questions was set at 5% with a K haleva et al. Clin Transl Allergy (2020) 10:40 Page 3 of 15 confidence level of 95%. For this, the SurveyMonkey tool (paediatric, all ages groups HCP), countries with more (https ://www.surve ymonk ey.com/mp/sampl e-size-calcu than 50 responses and investigated parameters were lator /) indicated that a sample size of 373 participants assessed by multiple regression analysis. was required to provide good estimates given the overall Two sub-analyses were performed, one amongst HCPs population size of 12,000. from different geographic regions and one amongst pediatricians, adults, or all ages HCPs. A minimum of 50 responders per country was required for comparison of Data collection data between countries to ensure that there was adequate The survey was distributed by the scientific content power to detect significant differences. Summary tables officer of EAACI and presidents of NAS in Europe via a and bar charts were used to represent the results. Data link to the survey in SurveyMonkey through the mem- was considered significant if statistical tests produce a p bers’ mailing list. In addition, the survey was advertised value of < 0.05. on social media (e.g. Facebook, Twitter) and during the A qualitative data analysis was used to summarise EAACI 2019 congress. Before accessing the question- HCP’s comments. Text was divided into separate units, naire, potential respondents were informed about the coded and summarized as themes. Each response was study’s purpose, average time required to complete the reviewed by EK and GR. Any discrepancies were resolved survey and confidentiality policy on the last page of the through discussion and, if necessary, a third reviewer SurveyMonkey. The survey was conducted between 30th (MVO) was consulted. May and 28th June 2019. Two reminder emails were sent. Results The questionnaire Respondent demographics and characteristics The anonymized survey consisted of 25 questions (see We received 1819 responses, 550 were incomplete and supplementary materials). The questionnaire was trans - 14 were excluded as they did not satisfy the inclusion cri- lated into eight languages (English, German, French, teria. A total of 1255 responses from 71 countries were Greek, Spanish, Portuguese, Italian and Russian) and analysed. Further analysis focused on the 1179 responses back-translated into English to ensure validity. To reduce which came from Europe. There were 449 (38.1%) paedia - measurement error, some words, which could have sev- tricians, 88 (7.5%) adult physicians and 642 (54.5%) HCPs eral meanings or did not have a direct translation such who see all age groups. Respondent’s’ characteristics are as transition, transition lead, transition readiness assess- listed in Table  1. Additionally, a sensitivity analysis was ment tool and transition report were described in the performed looking at difference between responses in glossary at the beginning of the survey. A pilot on-line different languages. These findings were similar to those survey was conducted with 20 volunteer HCPs from the for the comparison between different countries (Addi - target group in different countries who were not mem - tional file 1: Tables S1, S2). bers of the EAACI Task Force to optimize clarity, rel- evance and web administration. They also tested the time Resources required to complete the survey, which ranged from 8 to The majority (51%) of HCP’s consultations with AYA 11 min. usually lasted about 20  min or less. Half of respond- To enhance completion rates for the survey and to keep ers reported that patients had direct access to an allergy it brief, minimal demographic and training information nurse and about 40% to either allergist, pulmonologist, was collected. An option for other free-text response dermatologist or gastroenterologist. Availability of social was permitted in each question. Data from the free-text workers and psychologists was mostly lacking (18% and answers was coded as ‘other’ and described in the foot- 24% respectively) (Table 2). notes of tables and figures. Notably, a total of 906 (77%) responders indicated that they had no specific resources to organize the care Statistical analysis for AYA with allergy and asthma differently than ser - All data was collected and analyzed using SPSS software vices to care for other age groups. Specific resources version 25.0. Descriptive statistics were used to describe such as e-learning materials (7.5%), workshops (7.1%), respondent characteristics. Means, medians, standard peer support (5.3%), phone hotline (4.7%) or webinars deviations, and lower and upper quartiles are presented (2.8%) were rarely offered (Table  3). The availability of for continuous variables. Frequency tables with percent- specific resources varied significantly between countries ages are provided for categorical variables. Categorical (p < 0.001 for no available resources, Additional file  1: variables were compared using Chi square or Fisher’s Table  S2). The lack of such resources was cited amongst exact test as appropriate. Association between clinic type Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 4 of 15 Table 1 Demographics of  survey responders and  practice Table 1 (continued) characteristics European countries (n = 1179) Number (%) respondents European countries (n = 1179) Number (%) respondents Russian 204 (17.3) Albania 2 (0.2) French 34 (2.9) Austria 6 (0.5) EAACI section Belarus 8 (0.6) Asthma 292 (24.8) Belgium 7 (0.6) Dermatology 57 (4.8) Bulgaria 4 (0.3) ENT 46 (3.9) Croatia 3 (0.2) Immunology 99 (8.4) Cyprus 1 (0.1) Paediatrics 358 (30.4) Czech Republic 26 (2.1) Primary Care and Allied Health 51 (4.3) Denmark 30 (2.4) None 276 (23.4) Estonia 4 (0.3) Profession Finland 4 (0.3) Doctor 1082 (91.8) France 46 (3.7) Specialist allergy nurse 68 (5.8) Germany 68 (5.4) Dietician 15 (1.3) Greece 34 (2.7) Others 14 (1.2) Hungary 3 (0.2) Speciality Iceland 3 (0.2) Paediatric allergy 368 (31.2) Ireland 31 (2.5) Paediatrics 331 (28.1) Italy 110 (8.8) Allergy (adults only) 138 (11.7) Kazakhstan 1 (0.1) Allergy (children and adults) 514 (43.6) Kosovo 2 (0.2) Dermatology 40 (3.4) Latvia 1 (0.1) Respiratory Medicine 172 (14.6) Lithuania 6 (0.5) Otorhinolaryngology 37 (3.1) Moldova 1 (0.1) General practitioner 41 (3.5) Monaco 1 (0.1) Internal Medicine 11 (0.9) Netherlands 32 (2.5) Immunology 16 (1.4) Norway 16 (1.3) Others 35 (3.0) Poland 10 (0.8)Work setting Portugal 56 (4.5) Tertiary care 542 (46) Republic of North Macedonia 8 (0.6) Secondary care 293 (24.9) Romania 54 (4.3) Primary care 270 (22.9) Russia 175 (13.9) Private practice 283 (24.0) Serbia 10 (0.8) Research 7 (0.6) Slovakia 19 (1.5) Years in practice Slovenia 10 (0.8) 0–5 248 (21) Spain 170 (13.5) 6–10 261 (22.1) Sweden 29 (2.3) 11–20 371 (31.5) Switzerland 8 (0.6) > 21 299 (25.3) Turkey 35 (2.8) ENT otolaryngology Ukraine 19 (1.5) Non-European countries (Supplementary materials) United Kingdom 124 (9.9) Member of the National allergy society only Uzbekistan 2 (0.2) Psychologist (n = 3, 0.3%), physician assistant allergy (n = 1, 0.1%), nurse a practitioner in training (n = 2, 0.2%), resident doctor in training (n = 2, 0.2%), Non‑European countries 76 (6.1) research associate (n = 3, 0.3%); health visitor (n = 2, 0.2%), medical student Language (n = 1, 0.1%) English 537 (45.5) Paediatric respiratory doctor (n = 20; 1.7%); psychologist (n = 3;0.3%); tabacology (n = 1;0.1%); sports medicine (n = 2;0.2%); safeguarding (n = 1;0.1%); Italian 105 (8.9) research associate (n = 2; 0.2%); public healthcare (n = 2;0.2%); pharmacology Greek 26 (2.2) (n = 1; 0.1%); infectionist (n = 3; 0.3%) Spanish 146 (12.4) Participants were allowed to select more than 1 answer German 74 (6.3) K haleva et al. Clin Transl Allergy (2020) 10:40 Page 5 of 15 Table 2 Consultation Practice parameters (n = 1179) Number (%) respondents HCPs category based on patient’s age Paediatric 449 (38.1) Adult 88 (7.5) All ages groups 642 (54.5) Time for follow‑up consultation with AYA, minutes Up to 10 135 (11.5) Up to 20 460 (39.0) Up to 30 395 (33.5) Up to 45 143 (12.1) > 45 46 (3.9) b,c Direct access to healthcare professionals Allergy/asthma nurse 597 (50.6) Dietician 379 (32.1) Paediatric allergist 537 (45.5) Adult allergist 437 (37.1) Psychologist 293 (24.9) Respiratory physiotherapist 279 (23.7) Social worker 209 (17.7) Gastroenterologist 426 (36.1) Pulmonologist 543 (46.1) Dermatologists 502 (42.6) Otolaryngologist 329 (27.9) Referral only 42 (3.6) Others 4 (0.3) Is care for AYA in your service organised differently than services to care for other age groups? No, specific resources 906 (76.8) Yes, for all AYA 207 (17.6) Yes, for selected patients only 66 (5.6) Percentage of AYA transferred to adult services rather than being discharged to GP or no care: 1–10% 117 (9.9) 10–25% 123 (10.4) 25–50% 89 (7.5) 50–75% 108 (9.2) 75–100% 99 (8.4) Don’t know 167 (14.2) No transfer of AYA into adult services 198 (16.8) We see all ages 278 (23.6) Do you know how many of your transfer patients regularly attend the adult clinic after referral: No 361 (30.6) Yes, please specify the per centage 111 (9.4) NA, no transfer of patients into adult services 405 (34.4) NA, we see all ages 302 (25.6) Evaluation tools on whether AYA is ready to be sent to adult service No evaluation tool, AYA transferred at a specific age 489 (41.5) Patient consent 171 (14.5) Parental consent 122 (10.3) Checklist of questions/knowledge 50 (4.2) Completion of adolescent transition tool 48 (4.1) We see all ages 364 (30.9) Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 6 of 15 Table 2 (continued) Practice parameters (n = 1179) Number (%) respondents My clinic does not transfer AYA to adult services 157 (13.3) Feedback system between paediatric and local adult service No system of feedback in place 569 (48.3) The consultation letter from the first visit to adult clinic is sent back to referring paediatrician 150 (12.7) Regular meetings to discuss patients 101 (8.6) Not applicable, we see all ages 405 (34.4) AYA adolescent and young adult, GP general practitioner, HCP healthcare professional, NA not applicable Paediatric HCP looking after 0–18 years old patients; adult HCP looking after ≥ 18 years old patients Participants were allowed to select more than 1 answer Direct access- without the referral from HCP Other: play therapist, family doctor trained in allergy, health visitor, immunologist Data is shown only for 31 (2.8%) responses: adherence problems (n = 1); educational sessions for asthma or peanut allergic patients (n = 1); AYA asthma clinic (n = 16); severe or multiple allergies (n = 10); referred to youth service (n = 1); need transition to adult allergy service and not to GP (n = 3); some have more time (n = 1); psychiatric problems (n = 2); school problems (n = 1); joint consultation with paediatric and adult allergist (n = 1); deprived backgrounds (n = 1) Data is only provided for 58 responses (%): median (LQ,UQ): 62.5 (37.5, 80); minimum 1; maximum 95 Table 3 Resources and  other clinic elements to  support adolescents and  young adults with  allergy and  asthma in the medical services across Europe Resources N (%) No specific resources 906 (76.8) Consultation without parents present 300 (25.4) Consultation letters are sent to paediatric or adult colleagues involved in individual patients’ care 289 (24.5) Communication (emails, texts) addressed directly to the AYA (e.g. medical reports, appointments) 193 (16.4) Transition report 165 (14.0) Transition guideline for healthcare professionals 165 (14.0) Joint transition clinics with the paediatric and adult services 104 (8.8) Regular meetings involving paediatric and adult services in the field of allergy and pneumology 103 (8.7) e‑Learning materials 88 (7.5) Workshops 84 (7.1) Transition readiness assessment tool 64 (5.4) Peer learning/peer support for patients 63 (5.3) Phone hotline 56 (4.7) Transition lead 48 (4.1) Transition network 38 (3.2) Webinars 33 (2.8) Others 12 (1.0) AYA adolescent and young adult. Participants were allowed to select more than 1 answer Others: allergy nurse in the transition clinic; discussion about the transition process, adult clinic and self-management; disease- specific leaflets; referral to support groups/psychologist; email hotline; quality of life questionnaire; annual follow up. Results based on data from 1179 respondents the barriers to a satisfactory transition in comments from Twenty-eight percent of HCPs indicated that they started respondents (Box 1). preparing AYA for transition at about 16–18 years. There were significant differences between countries (p < 0.001, Additional file  1: Table  S2) in age of start of transition Timing of transition process, with significant interactions between clinic type Overall, “My clinic does not have a transition process” and countries (Additional file  1: Figure S1). Almost 40% was chosen by 20% paediatricians, 50% HCPs seeing only transferred AYA by the 18th year of age (Fig. 1). adults and 56% of those seeing all patients groups (Fig. 1). K haleva et al. Clin Transl Allergy (2020) 10:40 Page 7 of 15 Approach to transition 0.062; p = 0.027), this also varied significantly by country The structure of the transition process varied across (Additional file  1: Figure S3, Table S4). Box 1 summarises European countries (e.g. p < 0.001 for no specific respondents’ comments concerning training. resources, Additional file  1: Table  S2). One-quarter of HCPs reported that they asked AYA whether they Importance of the transition care wanted to have a consultation without parents present, Eighty-seven percent reported that they “strongly while only 16% of total sent medical-related corre- agree” or “agree” with the statement that transition is spondence directly to the AYA (Table 3). Less than 10% important for AYA with allergies and asthma (Addi- of HCPs had an established joint transition clinic with tional file  1: Figure S5). Of the paediatric HCPs, 64% the paediatric and adult services or regular meetings “strongly agree” with the statement while almost 50% to discuss individual cases. A mere 14% of respondents of adult HCPs and HCPs looking after all ages groups had a transition guideline for their service; 4% had a chose this answer. The degree to which respondents transition lead to oversee and coordinate the transition from paediatric clinics (compared to clinics for all age process and only 8.3% reported that they used a transi- groups) were more positive about the importance of tion assessment tool or checklist of questions to deter- transition varied by country (Additional file  1: Table S5, mine transition readiness. Figure S6). Notably, only 17% stated that transition is a HCPs said that not all AYA were transfered to a special- priority in their country (Additional file  1: Figure S5). ist adult services. For example, only around half of those Specific comments from respondents about the impor - with poorly controlled asthma or on biological therapy tance of transition care are summarised in Box 1. were transfered (Additional file  1: Table  S3). Among all responses, 30.6%) HCPs did not know whether their AYA Preconceptions and comments about transition process patients attended the adult clinic after referral. (Table 2). Some HCPs thought that transition should happen even Furthermore, nearly half of respondents (48%) reported if AYA was not moving between medical services. How- a lack of an established feedback system between pae- ever, others commented that they believed that there diatric and local adult medical services after the AYA was no need for transition if HCPs cared for all ages of transferred care. Only thirteen percent identified that a patients (Box 1). medical report was sent from adult clinic to the referring paediatrician and only 9% discussed patients at a regular Box 1. Example of comments from respondents meeting between services (Table 2). There were substan - A. Adolescent and young adult‑centred transition tial differences between countries in terms of feedback Communication (p < 0.001 for all, Additional file  1: Table  S2). Specific ‘An open dialog with the patient and his/her rela- comments about approach to transition are summarised tives is important as well as involving the patient in the in Box 1. treatment decision and plan.’ ‘Engage them, tell them what is important, why it is Training and challenges for healthcare professionals important, how to recognise if things are not working. A large proportion of HCPs never routinely asked Give them control in the process. Understand their cur- about self-harm, sexuality, depression or drug use rencies (what is important to them). Let them be part of (Fig.  2, Additional file  1: Table S2). There was the same their roadmap.’ pattern of responses regarding confidence in asking and ‘We should find appropriate communication meth - giving relevant advice about these areas. For example, ods for the Z generation.’ HCPs were not very confident and not confident in ask - ‘As patients grow up, we involve them more in their ing about self-harm (66.6%), sexuality (64%), depression health issues and we try and find a time to speak to (43.6%) and drug use (41.5%). Some respondents com- them without their parents present.’ mented specifically about importance of open dialogue ‘It’s very important to take into account psychophysi- with AYA (Box 1). ological characteristics of AYA, their behavioural and Seventy-six percent of all HCPs reported that they had social characteristics in order to make a personalised not received specific training in the care of AYA (Addi - treatment plan.’ tional file  1: Figure S3). Although respondents from clin- ‘During this process, consulting a psychologist who is ics for all age groups, compared to paediatric ones, were specialized in treating adolescents, should be proposed more likely to have specific training (adjusted regres - easily.’ sion coefficient 0.033; 95% confidence interval 0.004, Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 8 of 15 B. Barriers for implementation of transition ‘Disheartened we don’t have one.’ Lack of time ‘It is probably a luxury! There is so little basic ‘Important but difficult to establish in busy work allergy service for adults/children in our area that environment without more resources.’ I feel they needs to be sorted first. Although I agree ‘I do not have time within my allergy clinic appoint- effective transition is very important abs would ment to offer a full adolescent service.’ hugely help.’ Lack of resources ‘We are in a process where we plan to do transition ‘Would dearly love to have a robust transition ser- a high priority.’ vice - under-resourced and too many other competing ‘It is critical that comprehensive and age appro- priorities’. priate services are developed for adolescence as this ‘Plenty of opportunity to improve, but requires is the age group where they are most likely to be at resources.’ risk, particularly if they have life threatening allergy. ‘The importance of educating young adults about More needs to be done for this age group.’ their conditions is underestimated however this is ‘It is very important transition because this cat- imperative to help them manage their condition, mini- egory of patients is not very compliant…’ mise risk and prevent attacks/anaphylaxis.’ ‘Transition process should be kept on high level of Not enough adult allergy specialists awareness.’ ‘Adult services need funding, otherwise there is ‘It is very important, we should pay higher nowhere to transition the majority to. There is no dieti - attention.’ tian in the adult services at my trust.’ ‘Most paediatric secondary care allergy services don’t D. Transition protocol have a secondary care service to transition too. There is ‘There should be alignment across practices, health also nowhere to transition young people with multiple systems, countries.’ atopic comorbidities.’ ‘There is a lot of talk about addressing it, but very ‘We have no adult service for allergy within our hospital’. little opportunity for clinicians to get it right.’ ‘Not enough adult allergists; not enough time spent ‘I will be very happy if our colleges start to think for discussion with these patients.’ about this process and if we change our practice in Lack of training order to create and implement transition protocol.’ ‘Never heard of it before.’ ‘You highlighted a very important problem. I hope ‘i Th s survey has made me realize that I need to learn that these kind of questionnaires will made other more about the transition process.’ doctors think more about this problem, made them ‘Transition process should be known and educated.’ do more for this particular group of patients so hope- ‘Very important if there are dedicated specialists. We fully after the survey you will be able make a special have none in my country.’ guideline, algorithm to treat this group of patients ‘Every doctor should have a training on this transi- better.’ tion process.’ ‘The problem is to think that allergic patients have to E. Structure of transition be seen by different specialists at different ages but per - Transition clinic haps we should have additional training to clinically ‘A stand alone service for 16–25 year olds would be evaluate patients of certain ages (children, teens) where very useful.’ some specialists may feel less comfortable.’ ‘Consider adolescence extending to age 25 with ‘Doctors don’t have specific training in adolescence transitional clinic’. medicine.’ ‘It is a good thought in setting up special service for transition process.’ C. Importance of transition Transition lead ‘Vitally important and should be addressed.’ ‘Needs dedicated lead and feedback process. u Th s ‘Should be widely available.’ one does have the opportunity for meetings between ‘Should be implement in all clinic seeing allergy team members on specific cases.’ patients.’ ‘All Trusts should employ a dedicated whole time ‘The transition process is very important, we are cur - specialist nurse to oversee and support the transi- rently working on a special transition program in our tion process and ensure that clinicians are supported hospital.’ during process too.’ K haleva et al. Clin Transl Allergy (2020) 10:40 Page 9 of 15 Fig. 1 Age of adolescents and young adults with allergy and asthma when healthcare professionals start the transition process and transfer to adult medical services. HCP, healthcare professionals; Paediatric HCP (n = 449) looking after 0–18 years old patients; adult HCP (n = 88) looking after ≥ 18 years old patients; all ages groups HCP (n = 642). 1179 participants contributed to the statistical analysis. * Depending on the developmental stage and readiness. ** Depending on their secondary school graduation; after school or after university; based on the needs, readiness, developmental status of AYA, provider choice/availability Multidisciplinary team, and joint clinics, feedback ‘In many cases, a multidisciplinary psychological approach would be advisable.’ between paediatric and adult services ‘It’s very important to have system in place where ‘I don’t transition patients to adults’ medical ser- pediatric and adult doctors collaborate with each other vice but I think it’s very important to have continu- to maintain continuity of the medical care’. ity of the care and collaborations between medical ‘The lack of collaboration between the special professionals.’ - ‘Ideal for confidence: follow up by a mixed team ties of pediatrics and immunoallergy interferes in a child/adult.’ Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 10 of 15 Fig. 2 Challenges for healthcare professionals across Europe when managing adolescents and young adults with allergy and asthma. Results for each based on data from 1179 respondents. Additional file 1: Figure S6 demonstrates that respondents from different clinic types are similarly likely to ask about each area K haleva et al. Clin Transl Allergy (2020) 10:40 Page 11 of 15 Fig. 2 continued There was no need for transition if a HCP sees negative way in the follow-up and orientation of all ages of patient adolescents.’ ‘If the same physician takes care of allergic patients ‘It is important that the teen feels safe, confident and from 0 to 100  years, there is no need for transition emphathizes with the doctor who has seen him and and the physician who knows better the disease state with the one who will see him going forward, so that of the patient can decide whether it is recommend- adherence to treatment and other measures are appro- able to discharge or to continue the follow-up.’ priate. This is achieved with a good flow between pae - ‘In an allergy service where patients are seen diatric pneumologist/allergists and adult allergists’. throughout their whole life this problem is sorted.’ ‘There is no transition. We see how the patient pro - F. Preconceptions about transition gresses as a whole from infancy.’ Transition should happen even if AYA is not moving ‘Allergists should be the specialists who see allergic between medical services patients regardless of their age and then there would ‘The transition process is important for each patient. be no problem with transition.’ Even if they are not moving to adult care. Transition is ‘The transition issue does not apply if patients of all a process of patient learning and self care’. ages are seen in a department in a suitable setting.’ ‘Sometimes clinicians think transition is the pro- ‘Not applicable for my praxis, we treat and deal cess of moving between paediatric and adult services our paediatric patients continuously till adulthood.’ rather than discharging back to primary care. The Seeing the same doctor is important importance of educating young adults about their ‘Is important to have same doctor because he conditions is underestimated however this is impera- knows more well your history.’ tive to help them manage their condition, minimise ‘I believe that the best allergy care system is one risk and prevent attacks/anaphylaxis.’ where an allergist will patient all the time!’ ‘I think transition to adult services is less impor- AYA, adolescent and young adult; HCP, healthcare tant than a transition to adult management of their professionals. Healthcare professionals’ comments allergies. I.e. the transition is about reinforcing their were summarised using a qualitative data analy- independent management rather than about moving sis approach. Text was divided into separate units, them to adult clinics.’ coded and summarized as themes in duplicate. Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 12 of 15 Discussion instruments such as the ‘Transition Readiness Assess- This is the first survey on AYA with allergies and asthma ment Questionnaire’ [22] (TRAQ), or ‘Ready Steady Go’ aiming to provide an insight into the current reality of [23] that could be used to regularly access transition transition practices of frontline HCPs across Europe. readiness. For instance, TRAQ has been shown to be a Although most respondents felt that transition care was useful tool in measuring skills needed for successful tran- important, only a minority had a transition process or sition in AYA with special health care needs and guiding policy in place, as per the National Institute for Health educational interventions to support transition in dif- and Care Excellence guideline (NICE) in the UK [20] or ferent areas of life such as education, work and daily life the Children and Young’s People Allergy Network Scot- [22]. land (CYANS) Transition Pathway in Scotland [21]. Communication with AYA is key for smooth and suc- Moreover, transition care varies significantly by country cessful transition [15]. This should include holistic dis - and clinic type but it usually started late in adolescence. cussions about the disease, promotion of independence A small proportion of respondents had dedicated or spe- and self-management skills as well as other important cific resources for delivering transition care. Most did areas of AYAs’ health and well-being. The HEADSS not see AYA alone for part of the consultation. There was (Home, Education/Employment, peer group, Activi- often minimal liaison between paediatric and adult pri- ties, Drugs, Sexuality, Suicide/depression) assessment mary care and/or specialist services. The lack of specific has been successfully implemented in clinical practise training around AYA and the lack of transition guidelines to facilitate effective communication with AYA [24]. The for this group may be driving these significant limitations results of this survey revealed that discussions about and variations in care. self-harm, sexuality, depression and drug use are mostly According to the results of the survey, many allergy lacking in the majority of consultations with AYA with services do not have a transition process to support ado- allergic diseases. HCPs have little confidence in asking lescents to become independent patients. Comments and giving relevant advice about these areas despite self- from respondents suggest that many HCPs do not believe harm and depression being important co-morbidities in that transition is required when a clinic or service sees all allergies and asthma [11]. age groups. However, all patients go through the similar To deliver a successful transition process, a multi- developmental stages and require support and education disciplinary approach and feedback between paediatric in self-management of the disease despite staying within and adult medical services are required [15]. This sur - the same department. Where transition processes exist, vey revealed that only a few clinics have social workers they mostly start at 16–18  years and patients are trans- or psychologists available to help address transition-rel- ferred by age 18. It has been argued that preparations evant issues. Given that allergic diseases interact with for transition should be initiated early, [8, 18, 19] around psychological factors and are associated with increased 11–13  years, to allow the development of self-manage- anxiety, depression and suicidal thoughts [25–27] there ment skills and optimise other health and well-being is a need for an investment in training for HCPs in rec- outcomes. Facilitation of independence in the children’s ognising mental health problems and direct access to department is a vital step that prepares AYA to take specialists to address these needs. Poor communication responsibility for their lives and health prior to transition between paediatric and adult clinicians was also identi- to adult services. Successful transition practices depend fied by this survey. For instance, only 13% stated that on the AYA’s developmental stage; thus HCPs should they routinely sent a transition report, similar to those enable AYA to gradually take a leading role [8, 18]. reported by adult endocrinologists, who identified it as Unfortunately, this survey shows that only 25% of HCPs a key barrier for successful transition. [28] In this survey have any consultation with the AYA without parents and even fewer (8.8% HCPs) reported they had a joint tran- only some addressed medical communication directly to sition clinic with the AYA, his or her family, paediatric AYA. and adult HCPs; although a joint clinic is recommended In many European countries the timing of transition of in many disease-specific transition guidelines [29]. Pre - AYA from paediatric to adult care is determined by the venting patients becoming lost between paediatric and patient’s chronological age (usually 18 years) rather than adult services has been identified as a major challenge based on individual and patient-centred AYA readiness. for HCPs [30]. A transition lead who can coordinate and Only 4.2% of HCPs reported that they use a question- facilitate communication could be helpful [8, 18, 20] but naire assessment to determine readiness for transition. is currently lacking (95.9% stated they did not have one). Therefore, there is a need to help guide HCPs to initi - Overall, differences in transition practices could be ate transition when AYA are developmentally ready and explained by the lack of training, dedicated resources nurture self-management skills. There are several generic and a guideline in the care of AYA with allergies and K haleva et al. Clin Transl Allergy (2020) 10:40 Page 13 of 15 asthma. A study of AYA with diabetes showed that a process should be implemented in undergraduate and transition programme that consisted of disease educa- postgraduate training programmes. Lastly, these findings tion, case management, transition clinic, transition web- should focus policy makers on the need to invest in plan- site and group classes improved adherence to follow up ning these transition services and appropriately resourc- and health outcomes in comparison with usual care [31]. ing them. Several key components of the training in generic com- ponents of transition have already been proposed in Conclusions rheumatic diseases transition guidelines [18] and could This survey demonstrates significant limitations and vari - be adjusted for HCPs working in the allergy field. There ations in the delivery of transition practices for AYA with was a strongly positive reply from the survey respondents allergies and asthma in Europe. These findings should on the importance of transition for AYA with allergies be used as a catalyst for standardisation and harmonisa- and asthma which highlights the need to develop transi- tion of the delivery of transitional care across European tion programmes for these patients. countries to facilitate successful transition, improve well- being and healthcare outcomes of these patients. Strengths and limitations of the survey The survey was developed to be European representative; Supplementary information although there were several limitations. Firstly, it was lim- Supplementary information accompanies this paper at https ://doi. org/10.1186/s1360 1‑020‑00340 ‑z. ited to HCPs with membership of either EAACI or NAS, which could have caused selection bias. Secondly, it was not possible to obtain the number of members from each Additional file 1. Additional tables and figures. NAS to calculate the overlap with EAACI membership and therefore the precise response rate. Thirdly, those Abbreviations AYA: A dolescents and young adults; HCP: Healthcare professionals; EAACI: who did not participate might have different transition European Academy of Allergy and Clinical Immunology; NAS: National Allergy practices than the respondents of the survey. However, Societies; NICE: National Institute for Health and Care Excellence guideline; the results highlight the discrepancy and unmet need in CYANS: Children and Young’s People Allergy Network Scotland; TRAQ: Transi‑ tion Readiness Assessment Questionnaire; HEADSS: Home, Education/Employ‑ transition care for AYA with allergies and asthma across ment, Activities, Drugs, Sexuality, Suicide/depression. Europe. The representativeness of the survey is likely to be high given the large number of HCPs who responded Acknowledgements We would like to acknowledge the support of EAACI and NAS in dissemi‑ across Europe with good representation across countries, nation of this survey. We thank the following clinicians for their help with specialities, work settings and levels of experience. How- translations: Davide Caimmi, Lilian Chytiroglou, Maria Nivatsi, Maura Pedrini, ever, some countries were overrepresented which could Luciana Tanno, Galina Balakirski, Natalia Aliakhnovich, Anna Borushko, Dono‑ van Debluts and Evangeline Clark, Nina Staiger. We would like to thank Dr potentially shift the overall results toward current prac- Fiona Weber, UK, for sharing with us her Allergy MSc research project survey tices in Italy, Russia, Spain and the United Kingdom. In on adolescent care in the UK. We would also like to thank the EAACI Executive addition, the response from some countries was too low Committee for their helpful comments and suggestions as well as all the EAACI and National Allergy Societies members for their participation. An to draw any national conclusion. early draft of the survey results was prepared by EK and submitted as her MSc Allergy dissertation (University of Southampton). Implications Authors’ contributions These survey results have important implications. The Study concept and design: GR, M.V–O, EK. Statistical analysis and interpreta‑ survey highlights deficits in current transition practice tion of data: EK, GR. Drafting of the original manuscript: EK.,GR. Reviewed and for AYA with allergy and asthma and the lack of specific edited the manuscript: GR, M.V–O., EA, KB, RCK, PC, CA, BD, CGM, AD, CG, VH, BJ, HP, AFS, TGD, SSG, MHG, FT,OF. All authors provided critical review of the training for HCPs in the care of this age group. Specific manuscript. All authors read and approved the final manuscript. asthma and allergy ‘readiness to transition’ tools are not being used despite being able to ensure transition sup- Funding The open access publication of this article (article processing charge) was port is available at the developmentally appropriate time supported by EAACI. for individual patients. Further steps must focus on the development of evidence-based recommendations and Availability of data and materials The datasets used and/or analysed during the current study are available from standardization of the transition of care relevant to the corresponding author on reasonable request. the needs of these patients. This should be agreed on a European level, acknowledging possible national differ - Ethics approval and consent to participate The study was approved by the Ethics and Research Governance Committee ences in health care systems. It is hoped that a structured at University of Southampton, United Kingdom. transition program will lead to improvements in patient knowledge, compliance, self-efficacy and self-manage - Consent for publication Not applicable. ment. Furthermore, training in the generic transition Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 14 of 15 Competing interests 6. Flokstra‑ de Blok BM, Dubois AE, Vlieg‑Boerstra BJ, et al. Health‑related GR reports research funding from Asthma UK and National Institutes of Health quality of life of food allergic patients: comparison with the general Research into the challenge associated with asthma during adolescents. FT population and other diseases. Allergy. 2010;65(2):238–44. reports being a parent of a young adult with food allergy. None of the other 7. Christie D, Viner R. Adolescent development. BMJ. 2005;330(7486):301–4. authors have anything to disclose. 8. Vajro P, Fischler B, Burra P, et al. 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Italian Society of Paediatric Gastroenterology H, Nutrition IAoHG, Endoscopists ISoEISoG, et al. Transition of gastroenterological patients Publisher’s Note from paediatric to adult care: a position statement by the Italian Societies Springer Nature remains neutral with regard to jurisdictional claims in pub‑ of Gastroenterology. Dig Liver Dis. 2015;47(9):734–40. lished maps and institutional affiliations. 30. McDonagh JE, Viner RM. Lost in transition? Between paediatric and adult services. BMJ. 2006;332(7539):435–6. Ready to submit your research ? Choose BMC and benefit from: fast, convenient online submission thorough peer review by experienced researchers in your field rapid publication on acceptance support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year At BMC, research is always in progress. 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Abstract

Background: Transition from parent‑ delivered to self‑management is a vulnerable time for adolescents and young adults (AYA) with allergy and asthma. There is currently no European guideline available for healthcare professionals (HCPs) on transition of these patients and local/national protocols are also mostly lacking. Methods: European HCPs working with AYA with allergy and asthma were invited to complete an online survey assessing challenges of working with these patients, current transition practices and access to specific healthcare resources. Results: A total of 1179 responses from 41 European countries were collected. Most HCPs (86%) reported a lack of a transition guideline and a lack of a transition process (20% paediatric HCPs, 50% of adult HCPs, 56% HCP seeing all ages). Nearly half (48%) acknowledged a lack of an established feedback system between paediatric and adult medi‑ cal services. Many respondents never routinely asked about mental health issues such as self‑harm or depression and are not confident in asking about self‑harm (66.6%), sexuality (64%) and depression (43.6%). The majority of HCPs (76%) had not received specific training in the care of AYA although 87% agreed that transition was important for AYA with allergy and asthma. Conclusion: Although there was agreement that transition is important for AYA with allergy and asthma, there are crucial limitations and variations in the current provision of transition services across Europe. Standardisation of AYA management and specific training are required. This should improve management and continuity of care during adolescence and into adulthood to achieve the best healthcare outcomes. Keywords: Adolescent, Allergy, Healthcare professional, Transition, Young adult Introduction Allergy and asthma are amongst the most common chronic disorders. Furthermore, the prevalence and severity of allergic diseases and asthma continue to rise with adolescents and young adults (AYA)—those *Correspondence: g.c.roberts@soton.ac.uk between ages 11 and 25 [1–3]. It has been shown that Faculty of Medicine, University of Southampton, Southampton, UK AYA have higher rates of fatal anaphylaxis to foods [4] Full list of author information is available at the end of the article © The Author(s) 2020. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creat iveco mmons .org/licen ses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creat iveco mmons .org/publi cdoma in/ zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 2 of 15 and asthma deaths compared to younger children [5] During the last decade, a number of transition models partly due to risk taking behaviour and poor adherence. and guidelines have been proposed to address the organi- Moreover, AYA with food allergy (FA) have a lower qual- zation and process of transition. There are no conclusive ity of life (QoL) than AYA with other chronic conditions data on the superiority of one transition programme over [6]. These findings suggest that AYA with allergic condi - another [13]. The need for a multidisciplinary service tions require specialised resources and healthcare plans model integrating social support, education and non- to address their age- and disease-related needs. statutory services is well established [14] and exemplified Adolescence and young adulthood is an important by the recently published European Academy of Paedi- period of development with significant biological, psy - atrics consensus statement [15]. Furthermore, a num- chological and social changes [7]. As adolescents move ber of disease-specific programmes have been set up to towards adulthood, there is a need to evolve from being address the process of the transition such as in patients dependent on their parents/carers to becoming respon- with chronic digestive [16], rheumatic [17, 18], liver [8] sible and accountable for their own health and well-being and coeliac [19] diseases. as adults. This is independent of whether there are sepa - To our knowledge, there are currently no standard- rate paediatric and adult allergy clinics or one allergy ized policies and protocols on the transition of AYA clinic seeing all age groups. Transition has been defined with allergy and asthma in most European countries. as ‘active and evolving process that addresses the medi- Moreover, there are currently no international or Euro- cal, psychosocial, and educational needs of young peo- pean accepted guidelines available for HCPs working in ple as they prepare to move from child- to adult-centred this field. To develop best transition practices for AYA health care’ [8]. So it is not only about transfer of patient with allergic diseases across Europe, it is first necessary information and disease history to an adult healthcare to understand current transition care, as well as the bar- setting. Transition also, importantly, includes the provi- riers and facilitators HCPs face to implement quality of sion of the support that AYA with long-term allergic con- care. This paper describes the results of a pan-European ditions require to meet their needs to progress to being survey to assess the challenges of working with AYA, cur- independent adult patients. rent transition practices and access to specific healthcare Previous studies have shown that AYA and their par- resources to support transition. ents are mostly dissatisfied with their experience of the transition process. For instance, only 42% of AYA with Methods special healthcare needs had discussed transition care Study design with their healthcare professional (HCP) and only 41% A quantitative, online, cross-sectional survey was con- met the transition core outcomes such as whether HCP ducted. As no relevant validated questionnaire existed, had discussed transition to adult medical service, health the survey was developed by the members of the Euro- care needs, health insurance and had encouraged the pean Academy of Allergy and Clinical Immunology AYA to self-manage their disease [9]. AYA with sickle (EAACI) Adolescent and Young Adult Task Force after cell disease have voiced concern about the care they will a systematic literature review on the transition process receive in adult healthcare services, being worried about and challenges of the AYA with allergies. The study was leaving a familiar and trusted paediatric doctor [10]. A approved by the Ethics and Research Governance Com- recent systematic review on the challenges faced by AYA mittee at University of Southampton, United Kingdom. with allergy and asthma identified a large number of fixed and modifiable factors, including psychological, social/ Participants environmental, behavioural factors as well as the nature We invited HCPs managing AYA with allergy and of the patient-HCP relationship, that will influence self- asthma across Europe and members of the EAACI and/ management and ultimately health outcomes [11]. In or National Allergy Societies (NAS) within Europe who addition, a related systematic review assessed different were able to read English, German, French, Greek, Span- interventions for improving self-management and well- ish, Portuguese, Italian or Russian to participate in the being of AYA with asthma and allergies; many delivered survey. The potential survey population was approxi - improvements in patients with asthma although more mately 12,000 participants, the number of EAACI mem- robust evidence is required, especially for other allergic bers, in addition to members of the NAS. As it was not diseases [12]. Given this complexity we need to find ways possible to identify non-clinicians, the survey was sent for HCPs to facilitate the smooth transition process from to all EAACI members and it was highlighted in the invi- a paediatric to adult format of medical care and inform tation email that the survey was only for HCPs. Partici- transition guidelines. pants were asked to fill in the survey only once. A margin of error for answers to questions was set at 5% with a K haleva et al. Clin Transl Allergy (2020) 10:40 Page 3 of 15 confidence level of 95%. For this, the SurveyMonkey tool (paediatric, all ages groups HCP), countries with more (https ://www.surve ymonk ey.com/mp/sampl e-size-calcu than 50 responses and investigated parameters were lator /) indicated that a sample size of 373 participants assessed by multiple regression analysis. was required to provide good estimates given the overall Two sub-analyses were performed, one amongst HCPs population size of 12,000. from different geographic regions and one amongst pediatricians, adults, or all ages HCPs. A minimum of 50 responders per country was required for comparison of Data collection data between countries to ensure that there was adequate The survey was distributed by the scientific content power to detect significant differences. Summary tables officer of EAACI and presidents of NAS in Europe via a and bar charts were used to represent the results. Data link to the survey in SurveyMonkey through the mem- was considered significant if statistical tests produce a p bers’ mailing list. In addition, the survey was advertised value of < 0.05. on social media (e.g. Facebook, Twitter) and during the A qualitative data analysis was used to summarise EAACI 2019 congress. Before accessing the question- HCP’s comments. Text was divided into separate units, naire, potential respondents were informed about the coded and summarized as themes. Each response was study’s purpose, average time required to complete the reviewed by EK and GR. Any discrepancies were resolved survey and confidentiality policy on the last page of the through discussion and, if necessary, a third reviewer SurveyMonkey. The survey was conducted between 30th (MVO) was consulted. May and 28th June 2019. Two reminder emails were sent. Results The questionnaire Respondent demographics and characteristics The anonymized survey consisted of 25 questions (see We received 1819 responses, 550 were incomplete and supplementary materials). The questionnaire was trans - 14 were excluded as they did not satisfy the inclusion cri- lated into eight languages (English, German, French, teria. A total of 1255 responses from 71 countries were Greek, Spanish, Portuguese, Italian and Russian) and analysed. Further analysis focused on the 1179 responses back-translated into English to ensure validity. To reduce which came from Europe. There were 449 (38.1%) paedia - measurement error, some words, which could have sev- tricians, 88 (7.5%) adult physicians and 642 (54.5%) HCPs eral meanings or did not have a direct translation such who see all age groups. Respondent’s’ characteristics are as transition, transition lead, transition readiness assess- listed in Table  1. Additionally, a sensitivity analysis was ment tool and transition report were described in the performed looking at difference between responses in glossary at the beginning of the survey. A pilot on-line different languages. These findings were similar to those survey was conducted with 20 volunteer HCPs from the for the comparison between different countries (Addi - target group in different countries who were not mem - tional file 1: Tables S1, S2). bers of the EAACI Task Force to optimize clarity, rel- evance and web administration. They also tested the time Resources required to complete the survey, which ranged from 8 to The majority (51%) of HCP’s consultations with AYA 11 min. usually lasted about 20  min or less. Half of respond- To enhance completion rates for the survey and to keep ers reported that patients had direct access to an allergy it brief, minimal demographic and training information nurse and about 40% to either allergist, pulmonologist, was collected. An option for other free-text response dermatologist or gastroenterologist. Availability of social was permitted in each question. Data from the free-text workers and psychologists was mostly lacking (18% and answers was coded as ‘other’ and described in the foot- 24% respectively) (Table 2). notes of tables and figures. Notably, a total of 906 (77%) responders indicated that they had no specific resources to organize the care Statistical analysis for AYA with allergy and asthma differently than ser - All data was collected and analyzed using SPSS software vices to care for other age groups. Specific resources version 25.0. Descriptive statistics were used to describe such as e-learning materials (7.5%), workshops (7.1%), respondent characteristics. Means, medians, standard peer support (5.3%), phone hotline (4.7%) or webinars deviations, and lower and upper quartiles are presented (2.8%) were rarely offered (Table  3). The availability of for continuous variables. Frequency tables with percent- specific resources varied significantly between countries ages are provided for categorical variables. Categorical (p < 0.001 for no available resources, Additional file  1: variables were compared using Chi square or Fisher’s Table  S2). The lack of such resources was cited amongst exact test as appropriate. Association between clinic type Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 4 of 15 Table 1 Demographics of  survey responders and  practice Table 1 (continued) characteristics European countries (n = 1179) Number (%) respondents European countries (n = 1179) Number (%) respondents Russian 204 (17.3) Albania 2 (0.2) French 34 (2.9) Austria 6 (0.5) EAACI section Belarus 8 (0.6) Asthma 292 (24.8) Belgium 7 (0.6) Dermatology 57 (4.8) Bulgaria 4 (0.3) ENT 46 (3.9) Croatia 3 (0.2) Immunology 99 (8.4) Cyprus 1 (0.1) Paediatrics 358 (30.4) Czech Republic 26 (2.1) Primary Care and Allied Health 51 (4.3) Denmark 30 (2.4) None 276 (23.4) Estonia 4 (0.3) Profession Finland 4 (0.3) Doctor 1082 (91.8) France 46 (3.7) Specialist allergy nurse 68 (5.8) Germany 68 (5.4) Dietician 15 (1.3) Greece 34 (2.7) Others 14 (1.2) Hungary 3 (0.2) Speciality Iceland 3 (0.2) Paediatric allergy 368 (31.2) Ireland 31 (2.5) Paediatrics 331 (28.1) Italy 110 (8.8) Allergy (adults only) 138 (11.7) Kazakhstan 1 (0.1) Allergy (children and adults) 514 (43.6) Kosovo 2 (0.2) Dermatology 40 (3.4) Latvia 1 (0.1) Respiratory Medicine 172 (14.6) Lithuania 6 (0.5) Otorhinolaryngology 37 (3.1) Moldova 1 (0.1) General practitioner 41 (3.5) Monaco 1 (0.1) Internal Medicine 11 (0.9) Netherlands 32 (2.5) Immunology 16 (1.4) Norway 16 (1.3) Others 35 (3.0) Poland 10 (0.8)Work setting Portugal 56 (4.5) Tertiary care 542 (46) Republic of North Macedonia 8 (0.6) Secondary care 293 (24.9) Romania 54 (4.3) Primary care 270 (22.9) Russia 175 (13.9) Private practice 283 (24.0) Serbia 10 (0.8) Research 7 (0.6) Slovakia 19 (1.5) Years in practice Slovenia 10 (0.8) 0–5 248 (21) Spain 170 (13.5) 6–10 261 (22.1) Sweden 29 (2.3) 11–20 371 (31.5) Switzerland 8 (0.6) > 21 299 (25.3) Turkey 35 (2.8) ENT otolaryngology Ukraine 19 (1.5) Non-European countries (Supplementary materials) United Kingdom 124 (9.9) Member of the National allergy society only Uzbekistan 2 (0.2) Psychologist (n = 3, 0.3%), physician assistant allergy (n = 1, 0.1%), nurse a practitioner in training (n = 2, 0.2%), resident doctor in training (n = 2, 0.2%), Non‑European countries 76 (6.1) research associate (n = 3, 0.3%); health visitor (n = 2, 0.2%), medical student Language (n = 1, 0.1%) English 537 (45.5) Paediatric respiratory doctor (n = 20; 1.7%); psychologist (n = 3;0.3%); tabacology (n = 1;0.1%); sports medicine (n = 2;0.2%); safeguarding (n = 1;0.1%); Italian 105 (8.9) research associate (n = 2; 0.2%); public healthcare (n = 2;0.2%); pharmacology Greek 26 (2.2) (n = 1; 0.1%); infectionist (n = 3; 0.3%) Spanish 146 (12.4) Participants were allowed to select more than 1 answer German 74 (6.3) K haleva et al. Clin Transl Allergy (2020) 10:40 Page 5 of 15 Table 2 Consultation Practice parameters (n = 1179) Number (%) respondents HCPs category based on patient’s age Paediatric 449 (38.1) Adult 88 (7.5) All ages groups 642 (54.5) Time for follow‑up consultation with AYA, minutes Up to 10 135 (11.5) Up to 20 460 (39.0) Up to 30 395 (33.5) Up to 45 143 (12.1) > 45 46 (3.9) b,c Direct access to healthcare professionals Allergy/asthma nurse 597 (50.6) Dietician 379 (32.1) Paediatric allergist 537 (45.5) Adult allergist 437 (37.1) Psychologist 293 (24.9) Respiratory physiotherapist 279 (23.7) Social worker 209 (17.7) Gastroenterologist 426 (36.1) Pulmonologist 543 (46.1) Dermatologists 502 (42.6) Otolaryngologist 329 (27.9) Referral only 42 (3.6) Others 4 (0.3) Is care for AYA in your service organised differently than services to care for other age groups? No, specific resources 906 (76.8) Yes, for all AYA 207 (17.6) Yes, for selected patients only 66 (5.6) Percentage of AYA transferred to adult services rather than being discharged to GP or no care: 1–10% 117 (9.9) 10–25% 123 (10.4) 25–50% 89 (7.5) 50–75% 108 (9.2) 75–100% 99 (8.4) Don’t know 167 (14.2) No transfer of AYA into adult services 198 (16.8) We see all ages 278 (23.6) Do you know how many of your transfer patients regularly attend the adult clinic after referral: No 361 (30.6) Yes, please specify the per centage 111 (9.4) NA, no transfer of patients into adult services 405 (34.4) NA, we see all ages 302 (25.6) Evaluation tools on whether AYA is ready to be sent to adult service No evaluation tool, AYA transferred at a specific age 489 (41.5) Patient consent 171 (14.5) Parental consent 122 (10.3) Checklist of questions/knowledge 50 (4.2) Completion of adolescent transition tool 48 (4.1) We see all ages 364 (30.9) Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 6 of 15 Table 2 (continued) Practice parameters (n = 1179) Number (%) respondents My clinic does not transfer AYA to adult services 157 (13.3) Feedback system between paediatric and local adult service No system of feedback in place 569 (48.3) The consultation letter from the first visit to adult clinic is sent back to referring paediatrician 150 (12.7) Regular meetings to discuss patients 101 (8.6) Not applicable, we see all ages 405 (34.4) AYA adolescent and young adult, GP general practitioner, HCP healthcare professional, NA not applicable Paediatric HCP looking after 0–18 years old patients; adult HCP looking after ≥ 18 years old patients Participants were allowed to select more than 1 answer Direct access- without the referral from HCP Other: play therapist, family doctor trained in allergy, health visitor, immunologist Data is shown only for 31 (2.8%) responses: adherence problems (n = 1); educational sessions for asthma or peanut allergic patients (n = 1); AYA asthma clinic (n = 16); severe or multiple allergies (n = 10); referred to youth service (n = 1); need transition to adult allergy service and not to GP (n = 3); some have more time (n = 1); psychiatric problems (n = 2); school problems (n = 1); joint consultation with paediatric and adult allergist (n = 1); deprived backgrounds (n = 1) Data is only provided for 58 responses (%): median (LQ,UQ): 62.5 (37.5, 80); minimum 1; maximum 95 Table 3 Resources and  other clinic elements to  support adolescents and  young adults with  allergy and  asthma in the medical services across Europe Resources N (%) No specific resources 906 (76.8) Consultation without parents present 300 (25.4) Consultation letters are sent to paediatric or adult colleagues involved in individual patients’ care 289 (24.5) Communication (emails, texts) addressed directly to the AYA (e.g. medical reports, appointments) 193 (16.4) Transition report 165 (14.0) Transition guideline for healthcare professionals 165 (14.0) Joint transition clinics with the paediatric and adult services 104 (8.8) Regular meetings involving paediatric and adult services in the field of allergy and pneumology 103 (8.7) e‑Learning materials 88 (7.5) Workshops 84 (7.1) Transition readiness assessment tool 64 (5.4) Peer learning/peer support for patients 63 (5.3) Phone hotline 56 (4.7) Transition lead 48 (4.1) Transition network 38 (3.2) Webinars 33 (2.8) Others 12 (1.0) AYA adolescent and young adult. Participants were allowed to select more than 1 answer Others: allergy nurse in the transition clinic; discussion about the transition process, adult clinic and self-management; disease- specific leaflets; referral to support groups/psychologist; email hotline; quality of life questionnaire; annual follow up. Results based on data from 1179 respondents the barriers to a satisfactory transition in comments from Twenty-eight percent of HCPs indicated that they started respondents (Box 1). preparing AYA for transition at about 16–18 years. There were significant differences between countries (p < 0.001, Additional file  1: Table  S2) in age of start of transition Timing of transition process, with significant interactions between clinic type Overall, “My clinic does not have a transition process” and countries (Additional file  1: Figure S1). Almost 40% was chosen by 20% paediatricians, 50% HCPs seeing only transferred AYA by the 18th year of age (Fig. 1). adults and 56% of those seeing all patients groups (Fig. 1). K haleva et al. Clin Transl Allergy (2020) 10:40 Page 7 of 15 Approach to transition 0.062; p = 0.027), this also varied significantly by country The structure of the transition process varied across (Additional file  1: Figure S3, Table S4). Box 1 summarises European countries (e.g. p < 0.001 for no specific respondents’ comments concerning training. resources, Additional file  1: Table  S2). One-quarter of HCPs reported that they asked AYA whether they Importance of the transition care wanted to have a consultation without parents present, Eighty-seven percent reported that they “strongly while only 16% of total sent medical-related corre- agree” or “agree” with the statement that transition is spondence directly to the AYA (Table 3). Less than 10% important for AYA with allergies and asthma (Addi- of HCPs had an established joint transition clinic with tional file  1: Figure S5). Of the paediatric HCPs, 64% the paediatric and adult services or regular meetings “strongly agree” with the statement while almost 50% to discuss individual cases. A mere 14% of respondents of adult HCPs and HCPs looking after all ages groups had a transition guideline for their service; 4% had a chose this answer. The degree to which respondents transition lead to oversee and coordinate the transition from paediatric clinics (compared to clinics for all age process and only 8.3% reported that they used a transi- groups) were more positive about the importance of tion assessment tool or checklist of questions to deter- transition varied by country (Additional file  1: Table S5, mine transition readiness. Figure S6). Notably, only 17% stated that transition is a HCPs said that not all AYA were transfered to a special- priority in their country (Additional file  1: Figure S5). ist adult services. For example, only around half of those Specific comments from respondents about the impor - with poorly controlled asthma or on biological therapy tance of transition care are summarised in Box 1. were transfered (Additional file  1: Table  S3). Among all responses, 30.6%) HCPs did not know whether their AYA Preconceptions and comments about transition process patients attended the adult clinic after referral. (Table 2). Some HCPs thought that transition should happen even Furthermore, nearly half of respondents (48%) reported if AYA was not moving between medical services. How- a lack of an established feedback system between pae- ever, others commented that they believed that there diatric and local adult medical services after the AYA was no need for transition if HCPs cared for all ages of transferred care. Only thirteen percent identified that a patients (Box 1). medical report was sent from adult clinic to the referring paediatrician and only 9% discussed patients at a regular Box 1. Example of comments from respondents meeting between services (Table 2). There were substan - A. Adolescent and young adult‑centred transition tial differences between countries in terms of feedback Communication (p < 0.001 for all, Additional file  1: Table  S2). Specific ‘An open dialog with the patient and his/her rela- comments about approach to transition are summarised tives is important as well as involving the patient in the in Box 1. treatment decision and plan.’ ‘Engage them, tell them what is important, why it is Training and challenges for healthcare professionals important, how to recognise if things are not working. A large proportion of HCPs never routinely asked Give them control in the process. Understand their cur- about self-harm, sexuality, depression or drug use rencies (what is important to them). Let them be part of (Fig.  2, Additional file  1: Table S2). There was the same their roadmap.’ pattern of responses regarding confidence in asking and ‘We should find appropriate communication meth - giving relevant advice about these areas. For example, ods for the Z generation.’ HCPs were not very confident and not confident in ask - ‘As patients grow up, we involve them more in their ing about self-harm (66.6%), sexuality (64%), depression health issues and we try and find a time to speak to (43.6%) and drug use (41.5%). Some respondents com- them without their parents present.’ mented specifically about importance of open dialogue ‘It’s very important to take into account psychophysi- with AYA (Box 1). ological characteristics of AYA, their behavioural and Seventy-six percent of all HCPs reported that they had social characteristics in order to make a personalised not received specific training in the care of AYA (Addi - treatment plan.’ tional file  1: Figure S3). Although respondents from clin- ‘During this process, consulting a psychologist who is ics for all age groups, compared to paediatric ones, were specialized in treating adolescents, should be proposed more likely to have specific training (adjusted regres - easily.’ sion coefficient 0.033; 95% confidence interval 0.004, Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 8 of 15 B. Barriers for implementation of transition ‘Disheartened we don’t have one.’ Lack of time ‘It is probably a luxury! There is so little basic ‘Important but difficult to establish in busy work allergy service for adults/children in our area that environment without more resources.’ I feel they needs to be sorted first. Although I agree ‘I do not have time within my allergy clinic appoint- effective transition is very important abs would ment to offer a full adolescent service.’ hugely help.’ Lack of resources ‘We are in a process where we plan to do transition ‘Would dearly love to have a robust transition ser- a high priority.’ vice - under-resourced and too many other competing ‘It is critical that comprehensive and age appro- priorities’. priate services are developed for adolescence as this ‘Plenty of opportunity to improve, but requires is the age group where they are most likely to be at resources.’ risk, particularly if they have life threatening allergy. ‘The importance of educating young adults about More needs to be done for this age group.’ their conditions is underestimated however this is ‘It is very important transition because this cat- imperative to help them manage their condition, mini- egory of patients is not very compliant…’ mise risk and prevent attacks/anaphylaxis.’ ‘Transition process should be kept on high level of Not enough adult allergy specialists awareness.’ ‘Adult services need funding, otherwise there is ‘It is very important, we should pay higher nowhere to transition the majority to. There is no dieti - attention.’ tian in the adult services at my trust.’ ‘Most paediatric secondary care allergy services don’t D. Transition protocol have a secondary care service to transition too. There is ‘There should be alignment across practices, health also nowhere to transition young people with multiple systems, countries.’ atopic comorbidities.’ ‘There is a lot of talk about addressing it, but very ‘We have no adult service for allergy within our hospital’. little opportunity for clinicians to get it right.’ ‘Not enough adult allergists; not enough time spent ‘I will be very happy if our colleges start to think for discussion with these patients.’ about this process and if we change our practice in Lack of training order to create and implement transition protocol.’ ‘Never heard of it before.’ ‘You highlighted a very important problem. I hope ‘i Th s survey has made me realize that I need to learn that these kind of questionnaires will made other more about the transition process.’ doctors think more about this problem, made them ‘Transition process should be known and educated.’ do more for this particular group of patients so hope- ‘Very important if there are dedicated specialists. We fully after the survey you will be able make a special have none in my country.’ guideline, algorithm to treat this group of patients ‘Every doctor should have a training on this transi- better.’ tion process.’ ‘The problem is to think that allergic patients have to E. Structure of transition be seen by different specialists at different ages but per - Transition clinic haps we should have additional training to clinically ‘A stand alone service for 16–25 year olds would be evaluate patients of certain ages (children, teens) where very useful.’ some specialists may feel less comfortable.’ ‘Consider adolescence extending to age 25 with ‘Doctors don’t have specific training in adolescence transitional clinic’. medicine.’ ‘It is a good thought in setting up special service for transition process.’ C. Importance of transition Transition lead ‘Vitally important and should be addressed.’ ‘Needs dedicated lead and feedback process. u Th s ‘Should be widely available.’ one does have the opportunity for meetings between ‘Should be implement in all clinic seeing allergy team members on specific cases.’ patients.’ ‘All Trusts should employ a dedicated whole time ‘The transition process is very important, we are cur - specialist nurse to oversee and support the transi- rently working on a special transition program in our tion process and ensure that clinicians are supported hospital.’ during process too.’ K haleva et al. Clin Transl Allergy (2020) 10:40 Page 9 of 15 Fig. 1 Age of adolescents and young adults with allergy and asthma when healthcare professionals start the transition process and transfer to adult medical services. HCP, healthcare professionals; Paediatric HCP (n = 449) looking after 0–18 years old patients; adult HCP (n = 88) looking after ≥ 18 years old patients; all ages groups HCP (n = 642). 1179 participants contributed to the statistical analysis. * Depending on the developmental stage and readiness. ** Depending on their secondary school graduation; after school or after university; based on the needs, readiness, developmental status of AYA, provider choice/availability Multidisciplinary team, and joint clinics, feedback ‘In many cases, a multidisciplinary psychological approach would be advisable.’ between paediatric and adult services ‘It’s very important to have system in place where ‘I don’t transition patients to adults’ medical ser- pediatric and adult doctors collaborate with each other vice but I think it’s very important to have continu- to maintain continuity of the medical care’. ity of the care and collaborations between medical ‘The lack of collaboration between the special professionals.’ - ‘Ideal for confidence: follow up by a mixed team ties of pediatrics and immunoallergy interferes in a child/adult.’ Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 10 of 15 Fig. 2 Challenges for healthcare professionals across Europe when managing adolescents and young adults with allergy and asthma. Results for each based on data from 1179 respondents. Additional file 1: Figure S6 demonstrates that respondents from different clinic types are similarly likely to ask about each area K haleva et al. Clin Transl Allergy (2020) 10:40 Page 11 of 15 Fig. 2 continued There was no need for transition if a HCP sees negative way in the follow-up and orientation of all ages of patient adolescents.’ ‘If the same physician takes care of allergic patients ‘It is important that the teen feels safe, confident and from 0 to 100  years, there is no need for transition emphathizes with the doctor who has seen him and and the physician who knows better the disease state with the one who will see him going forward, so that of the patient can decide whether it is recommend- adherence to treatment and other measures are appro- able to discharge or to continue the follow-up.’ priate. This is achieved with a good flow between pae - ‘In an allergy service where patients are seen diatric pneumologist/allergists and adult allergists’. throughout their whole life this problem is sorted.’ ‘There is no transition. We see how the patient pro - F. Preconceptions about transition gresses as a whole from infancy.’ Transition should happen even if AYA is not moving ‘Allergists should be the specialists who see allergic between medical services patients regardless of their age and then there would ‘The transition process is important for each patient. be no problem with transition.’ Even if they are not moving to adult care. Transition is ‘The transition issue does not apply if patients of all a process of patient learning and self care’. ages are seen in a department in a suitable setting.’ ‘Sometimes clinicians think transition is the pro- ‘Not applicable for my praxis, we treat and deal cess of moving between paediatric and adult services our paediatric patients continuously till adulthood.’ rather than discharging back to primary care. The Seeing the same doctor is important importance of educating young adults about their ‘Is important to have same doctor because he conditions is underestimated however this is impera- knows more well your history.’ tive to help them manage their condition, minimise ‘I believe that the best allergy care system is one risk and prevent attacks/anaphylaxis.’ where an allergist will patient all the time!’ ‘I think transition to adult services is less impor- AYA, adolescent and young adult; HCP, healthcare tant than a transition to adult management of their professionals. Healthcare professionals’ comments allergies. I.e. the transition is about reinforcing their were summarised using a qualitative data analy- independent management rather than about moving sis approach. Text was divided into separate units, them to adult clinics.’ coded and summarized as themes in duplicate. Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 12 of 15 Discussion instruments such as the ‘Transition Readiness Assess- This is the first survey on AYA with allergies and asthma ment Questionnaire’ [22] (TRAQ), or ‘Ready Steady Go’ aiming to provide an insight into the current reality of [23] that could be used to regularly access transition transition practices of frontline HCPs across Europe. readiness. For instance, TRAQ has been shown to be a Although most respondents felt that transition care was useful tool in measuring skills needed for successful tran- important, only a minority had a transition process or sition in AYA with special health care needs and guiding policy in place, as per the National Institute for Health educational interventions to support transition in dif- and Care Excellence guideline (NICE) in the UK [20] or ferent areas of life such as education, work and daily life the Children and Young’s People Allergy Network Scot- [22]. land (CYANS) Transition Pathway in Scotland [21]. Communication with AYA is key for smooth and suc- Moreover, transition care varies significantly by country cessful transition [15]. This should include holistic dis - and clinic type but it usually started late in adolescence. cussions about the disease, promotion of independence A small proportion of respondents had dedicated or spe- and self-management skills as well as other important cific resources for delivering transition care. Most did areas of AYAs’ health and well-being. The HEADSS not see AYA alone for part of the consultation. There was (Home, Education/Employment, peer group, Activi- often minimal liaison between paediatric and adult pri- ties, Drugs, Sexuality, Suicide/depression) assessment mary care and/or specialist services. The lack of specific has been successfully implemented in clinical practise training around AYA and the lack of transition guidelines to facilitate effective communication with AYA [24]. The for this group may be driving these significant limitations results of this survey revealed that discussions about and variations in care. self-harm, sexuality, depression and drug use are mostly According to the results of the survey, many allergy lacking in the majority of consultations with AYA with services do not have a transition process to support ado- allergic diseases. HCPs have little confidence in asking lescents to become independent patients. Comments and giving relevant advice about these areas despite self- from respondents suggest that many HCPs do not believe harm and depression being important co-morbidities in that transition is required when a clinic or service sees all allergies and asthma [11]. age groups. However, all patients go through the similar To deliver a successful transition process, a multi- developmental stages and require support and education disciplinary approach and feedback between paediatric in self-management of the disease despite staying within and adult medical services are required [15]. This sur - the same department. Where transition processes exist, vey revealed that only a few clinics have social workers they mostly start at 16–18  years and patients are trans- or psychologists available to help address transition-rel- ferred by age 18. It has been argued that preparations evant issues. Given that allergic diseases interact with for transition should be initiated early, [8, 18, 19] around psychological factors and are associated with increased 11–13  years, to allow the development of self-manage- anxiety, depression and suicidal thoughts [25–27] there ment skills and optimise other health and well-being is a need for an investment in training for HCPs in rec- outcomes. Facilitation of independence in the children’s ognising mental health problems and direct access to department is a vital step that prepares AYA to take specialists to address these needs. Poor communication responsibility for their lives and health prior to transition between paediatric and adult clinicians was also identi- to adult services. Successful transition practices depend fied by this survey. For instance, only 13% stated that on the AYA’s developmental stage; thus HCPs should they routinely sent a transition report, similar to those enable AYA to gradually take a leading role [8, 18]. reported by adult endocrinologists, who identified it as Unfortunately, this survey shows that only 25% of HCPs a key barrier for successful transition. [28] In this survey have any consultation with the AYA without parents and even fewer (8.8% HCPs) reported they had a joint tran- only some addressed medical communication directly to sition clinic with the AYA, his or her family, paediatric AYA. and adult HCPs; although a joint clinic is recommended In many European countries the timing of transition of in many disease-specific transition guidelines [29]. Pre - AYA from paediatric to adult care is determined by the venting patients becoming lost between paediatric and patient’s chronological age (usually 18 years) rather than adult services has been identified as a major challenge based on individual and patient-centred AYA readiness. for HCPs [30]. A transition lead who can coordinate and Only 4.2% of HCPs reported that they use a question- facilitate communication could be helpful [8, 18, 20] but naire assessment to determine readiness for transition. is currently lacking (95.9% stated they did not have one). Therefore, there is a need to help guide HCPs to initi - Overall, differences in transition practices could be ate transition when AYA are developmentally ready and explained by the lack of training, dedicated resources nurture self-management skills. There are several generic and a guideline in the care of AYA with allergies and K haleva et al. Clin Transl Allergy (2020) 10:40 Page 13 of 15 asthma. A study of AYA with diabetes showed that a process should be implemented in undergraduate and transition programme that consisted of disease educa- postgraduate training programmes. Lastly, these findings tion, case management, transition clinic, transition web- should focus policy makers on the need to invest in plan- site and group classes improved adherence to follow up ning these transition services and appropriately resourc- and health outcomes in comparison with usual care [31]. ing them. Several key components of the training in generic com- ponents of transition have already been proposed in Conclusions rheumatic diseases transition guidelines [18] and could This survey demonstrates significant limitations and vari - be adjusted for HCPs working in the allergy field. There ations in the delivery of transition practices for AYA with was a strongly positive reply from the survey respondents allergies and asthma in Europe. These findings should on the importance of transition for AYA with allergies be used as a catalyst for standardisation and harmonisa- and asthma which highlights the need to develop transi- tion of the delivery of transitional care across European tion programmes for these patients. countries to facilitate successful transition, improve well- being and healthcare outcomes of these patients. Strengths and limitations of the survey The survey was developed to be European representative; Supplementary information although there were several limitations. Firstly, it was lim- Supplementary information accompanies this paper at https ://doi. org/10.1186/s1360 1‑020‑00340 ‑z. ited to HCPs with membership of either EAACI or NAS, which could have caused selection bias. Secondly, it was not possible to obtain the number of members from each Additional file 1. Additional tables and figures. NAS to calculate the overlap with EAACI membership and therefore the precise response rate. Thirdly, those Abbreviations AYA: A dolescents and young adults; HCP: Healthcare professionals; EAACI: who did not participate might have different transition European Academy of Allergy and Clinical Immunology; NAS: National Allergy practices than the respondents of the survey. However, Societies; NICE: National Institute for Health and Care Excellence guideline; the results highlight the discrepancy and unmet need in CYANS: Children and Young’s People Allergy Network Scotland; TRAQ: Transi‑ tion Readiness Assessment Questionnaire; HEADSS: Home, Education/Employ‑ transition care for AYA with allergies and asthma across ment, Activities, Drugs, Sexuality, Suicide/depression. Europe. The representativeness of the survey is likely to be high given the large number of HCPs who responded Acknowledgements We would like to acknowledge the support of EAACI and NAS in dissemi‑ across Europe with good representation across countries, nation of this survey. We thank the following clinicians for their help with specialities, work settings and levels of experience. How- translations: Davide Caimmi, Lilian Chytiroglou, Maria Nivatsi, Maura Pedrini, ever, some countries were overrepresented which could Luciana Tanno, Galina Balakirski, Natalia Aliakhnovich, Anna Borushko, Dono‑ van Debluts and Evangeline Clark, Nina Staiger. We would like to thank Dr potentially shift the overall results toward current prac- Fiona Weber, UK, for sharing with us her Allergy MSc research project survey tices in Italy, Russia, Spain and the United Kingdom. In on adolescent care in the UK. We would also like to thank the EAACI Executive addition, the response from some countries was too low Committee for their helpful comments and suggestions as well as all the EAACI and National Allergy Societies members for their participation. An to draw any national conclusion. early draft of the survey results was prepared by EK and submitted as her MSc Allergy dissertation (University of Southampton). Implications Authors’ contributions These survey results have important implications. The Study concept and design: GR, M.V–O, EK. Statistical analysis and interpreta‑ survey highlights deficits in current transition practice tion of data: EK, GR. Drafting of the original manuscript: EK.,GR. Reviewed and for AYA with allergy and asthma and the lack of specific edited the manuscript: GR, M.V–O., EA, KB, RCK, PC, CA, BD, CGM, AD, CG, VH, BJ, HP, AFS, TGD, SSG, MHG, FT,OF. All authors provided critical review of the training for HCPs in the care of this age group. Specific manuscript. All authors read and approved the final manuscript. asthma and allergy ‘readiness to transition’ tools are not being used despite being able to ensure transition sup- Funding The open access publication of this article (article processing charge) was port is available at the developmentally appropriate time supported by EAACI. for individual patients. Further steps must focus on the development of evidence-based recommendations and Availability of data and materials The datasets used and/or analysed during the current study are available from standardization of the transition of care relevant to the corresponding author on reasonable request. the needs of these patients. This should be agreed on a European level, acknowledging possible national differ - Ethics approval and consent to participate The study was approved by the Ethics and Research Governance Committee ences in health care systems. It is hoped that a structured at University of Southampton, United Kingdom. transition program will lead to improvements in patient knowledge, compliance, self-efficacy and self-manage - Consent for publication Not applicable. ment. Furthermore, training in the generic transition Khaleva et al. Clin Transl Allergy (2020) 10:40 Page 14 of 15 Competing interests 6. Flokstra‑ de Blok BM, Dubois AE, Vlieg‑Boerstra BJ, et al. Health‑related GR reports research funding from Asthma UK and National Institutes of Health quality of life of food allergic patients: comparison with the general Research into the challenge associated with asthma during adolescents. FT population and other diseases. Allergy. 2010;65(2):238–44. reports being a parent of a young adult with food allergy. None of the other 7. Christie D, Viner R. Adolescent development. BMJ. 2005;330(7486):301–4. authors have anything to disclose. 8. Vajro P, Fischler B, Burra P, et al. 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Italian Society of Paediatric Gastroenterology H, Nutrition IAoHG, Endoscopists ISoEISoG, et al. Transition of gastroenterological patients Publisher’s Note from paediatric to adult care: a position statement by the Italian Societies Springer Nature remains neutral with regard to jurisdictional claims in pub‑ of Gastroenterology. Dig Liver Dis. 2015;47(9):734–40. lished maps and institutional affiliations. 30. McDonagh JE, Viner RM. Lost in transition? Between paediatric and adult services. BMJ. 2006;332(7539):435–6. Ready to submit your research ? Choose BMC and benefit from: fast, convenient online submission thorough peer review by experienced researchers in your field rapid publication on acceptance support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year At BMC, research is always in progress. 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