Respondent demographics and characteristics
We received 1819 responses, 550 were incomplete and 14 were excluded as they did not satisfy the inclusion criteria. A total of 1255 responses from 71 countries were analysed. Further analysis focused on the 1179 responses which came from Europe. There were 449 (38.1%) paediatricians, 88 (7.5%) adult physicians and 642 (54.5%) HCPs who see all age groups. Respondent’s’ characteristics are listed in Table 1. Additionally, a sensitivity analysis was performed looking at difference between responses in different languages. These findings were similar to those for the comparison between different countries (Table S1,2).
European countries (n=1179)
|
Number (%) respondents
|
Albania
|
2 (0.2)
|
Austria
|
6 (0.5)
|
Belarus
|
8 (0.6)
|
Belgium
|
7 (0.6)
|
Bulgaria
|
4 (0.3)
|
Croatia
|
3 (0.2)
|
Cyprus
|
1 (0.1)
|
Czech Republic
|
26 (2.1)
|
Denmark
|
30 (2.4)
|
Estonia
|
4 (0.3)
|
Finland
|
4 (0.3)
|
France
|
46 (3.7)
|
Germany
|
68 (5.4)
|
Greece
|
34 (2.7)
|
Hungary
|
3 (0.2)
|
Iceland
|
3 (0.2)
|
Ireland
|
31 (2.5)
|
Italy
|
110 (8.8)
|
Kazakhstan
|
1 (0.1)
|
Kosovo
|
2 (0.2)
|
Latvia
|
1 (0.1)
|
Lithuania
|
6 (0.5)
|
Moldova
|
1 (0.1)
|
Monaco
|
1 (0.1)
|
Netherlands
|
32 (2.5)
|
Norway
|
16 (1.3)
|
Poland
|
10 (0.8)
|
Portugal
|
56 (4.5)
|
Republic of North Macedonia
|
8 (0.6)
|
Romania
|
54 (4.3)
|
Russia
|
175 (13.9)
|
Serbia
|
10 (0.8)
|
Slovakia
|
19 (1.5)
|
Slovenia
|
10 (0.8)
|
Spain
|
170 (13.5)
|
Sweden
|
29 (2.3)
|
Switzerland
|
8 (0.6)
|
Turkey
|
35 (2.8)
|
Ukraine
|
19 (1.5)
|
United Kingdom
|
124 (9.9)
|
Uzbekistan
|
2 (0.2)
|
Non-European countries a
|
76 (6.1)
|
Language
|
|
English
|
537 (45.5)
|
Italian
|
105 (8.9)
|
Greek
|
26 (2.2)
|
Spanish
|
146 (12.4)
|
German
|
74 (6.3)
|
Russian
|
204 (17.3)
|
French
|
34 (2.9)
|
EAACI section
|
|
Asthma
|
292 (24.8)
|
Dermatology
|
57 (4.8)
|
ENT
|
46 (3.9)
|
Immunology
|
99 (8.4)
|
Paediatrics
|
358 (30.4)
|
Primary Care and Allied Health
|
51 (4.3)
|
Noneb
|
276 (23.4)
|
Profession
|
|
Doctor
|
1082 (91.8)
|
Specialist allergy nurse
|
68 (5.8)
|
Dietician
|
15 (1.3)
|
Othersc
|
14 (1.2)
|
Speciality
|
|
Paediatric allergy
|
368 (31.2)
|
Paediatrics
|
331 (28.1)
|
Allergy (adults only)
|
138 (11.7)
|
Allergy (children and adults)
|
514 (43.6)
|
Dermatology
|
40 (3.4)
|
Respiratory Medicine
|
172 (14.6)
|
Otorhinolaryngology
|
37 (3.1)
|
General practitioner
|
41 (3.5)
|
Internal Medicine
|
11 (0.9)
|
Immunology
|
16 (1.4)
|
Otherse
|
35 (3.0)
|
Work settingd
|
|
Tertiary care
|
542 (46)
|
Secondary care
|
293 (24.9)
|
Primary care
|
270 (22.9)
|
Private practice
|
283 (24.0)
|
Research
|
7 (0.6)
|
Years in practice
|
|
0-5
|
248 (21)
|
6-10
|
261 (22.1)
|
11-20
|
371 (31.5)
|
>21
|
299 (25.3)
|
ENT, otolaryngology.
aNon-European countries (Supplementary materials).
bMember of the National allergy society only.
cPsychologist (n=3, 0.3%), physician assistant allergy (n=1, 0.1%), nurse practitioner in training (n=2, 0.2%), resident doctor in training (n=2, 0.2%), research associate (n=3, 0.3%); health visitor (n=2, 0.2%), medical student (n=1, 0.1%).
dParticipants were allowed to select more than 1 answer.
ePaediatric 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%); research associate (n=2; 0.2%); public healthcare (n=2;0.2%); pharmacology (n=1; 0.1%); infectionist (n=3; 0.3%).
|
Table 1
Demographics of survey responders and practice characteristics
Resources
The majority (51%) of HCP’s consultations with AYA usually lasted about 20 minutes or less. Half of responders reported that patients had direct access to an allergy nurse and about 40% to either allergist, pulmonologist, dermatologist or gastroenterologist. Availability of social workers and psychologists was mostly lacking (18% and 24% respectively) (Table 2).
Practice parameters (n=1179)
|
Number (%) respondents
|
HCPs category based on patient’s age a
|
|
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)
|
Direct access to healthcare professionals b,c
|
|
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)
|
Othersd
|
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 onlye
|
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 percentagef
|
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 serviceb
|
|
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)
|
My clinic does not transfer AYA to adult services
|
157 (13.3)
|
Feedback system between paediatric and local adult serviceb
|
|
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.
aPaediatric HCP looking after 0-18 years old patients; adult HCP looking after ≥18 years old patients.
bParticipants were allowed to select more than 1 answer.
cDirect access- without the referral from HCP.
dOther: play therapist, family doctor trained in allergy, health visitor, immunologist.
eData 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).
fData is only provided for 58 responses (%): median (LQ,UQ): 62.5 (37.5, 80); minimum 1; maximum 95.
|
Table 2
Notably, a total of 906 (77%) responders indicated that they had no specific resources to organize the care for AYA with allergy and asthma differently than services to care for other age groups. Specific resources such as e-learning materials (7.5%), workshops (7.1%), peer support (5.3%), phone hotline (4.7%) or webinars (2.8%) were rarely offered (Table 3). The availability of specific resources varied significantly between countries (p<0.001 for no available resources, Table S2). The lack of such resources was cited amongst the barriers to a satisfactory transition in comments from respondents (Box 1).
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 a
|
12 (1.0)
|
AYA, adolescent and young adult. Participants were allowed to select more than 1 answer. aOthers: 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.
|
Table 3
Resources and other clinic elements to support adolescents and young adults with allergy and asthma in the medical services across Europe
Timing of transition
Overall, “My clinic does not have a transition process” was chosen by20% paediatricians, 50% HCPs seeing only adults and 56% of those seeing all patients groups (Figure 1). Twenty-eight percent of HCPs indicated that they started preparing AYA for transition at about 16-18 years. There were significant differences between countries (p<0.001, Table S2) in age of start of transition process, with significant interactions between clinic type and countries (Figure S1). Almost 40% transferred AYA by the 18th year of age (Figure 1).
Approach to transition
The structure of the transition process varied across European countries (eg p<0.001 for no specific resources, Table S2). One-quarter of HCPs reported that they asked AYA whether they wanted to have a consultation without parents present, while only 16% of total sent medical-related correspondence directly to the AYA (Table 3). Less than 10% of HCPs had an established joint transition clinic with the paediatric and adult services or regular meetings to discuss individual cases. A mere 14% of respondents had a transition guideline for their service; 4% had a transition lead to oversee and coordinate the transition process and only 8.3% reported that they used a transition assessment tool or checklist of questions to determine transition readiness.
HCPs said that not all AYA were transitioned to a specialist adult services. For example, only around half of those with poorly controlled asthma or on biological therapy were transitioned (Table S3). Among all responses, 30.6%) HCPs did not know whether their AYA patients attended the adult clinic after referral. (Table 2). Furthermore, nearly half of respondents (48%) reported a lack of an established feedback system between paediatric and local adult medical services after the AYA transferred care. Only thirteen percent identified that a medical report was sent from adult clinic to the referring paediatrician and only 9% discussed patients at a regular meeting between services (Table 2). There were substantial differences between countries in terms of feedback (p<0.001 for all, Table S2). Specific comments about approach to transition are summarised in Box 1.
A. Adolescent and young adult-centred transition
|
Communication:
‘An open dialog with the patient and his/her relatives is important as well as involving the patient in the treatment decision and plan.’
|
‘Engage them, tell them what is important, why it is important, how to recognise if things are not working. Give them control in the process. Understand their currencies (what is important to them). Let them be part of their roadmap.’
|
‘We should find appropriate communication methods for the Z generation.’
|
‘As patients grow up, we involve them more in their health issues and we try and find a time to speak to them without their parents present.’
|
‘It's very important to take into account psychophysiological characteristics of AYA, their behavioural and social characteristics in order to make a personalised treatment plan.’
|
‘During this process, consulting a psychologist who is specialized in treating adolescents, should be proposed easily.’
|
|
B. Barriers for implementation of transition
|
Lack of time:
‘Important but difficult to establish in busy work environment without more resources.’
|
‘I do not have time within my allergy clinic appointment to offer a full adolescent service.’
|
|
Lack of resources:
‘Would dearly love to have a robust transition service - under-resourced and too many other competing priorities.’
|
‘Plenty of opportunity to improve, but requires resources.’
|
‘The importance of educating young adults about their conditions is underestimated however this is imperative to help them manage their condition, minimise risk and prevent attacks/ anaphylaxis.’
|
|
Not enough adult allergy specialists:
‘Adult services need funding, otherwise there is nowhere to transition the majority to. There is no dietitian in the adult services at my trust.’
|
‘Most paediatric secondary care allergy services don't have a secondary care service to transition too. There is also nowhere to transition young people with multiple atopic comorbidities.’
|
‘We have no adult service for allergy within our hospital.’
|
‘Not enough adult allergists; not enough time spent for discussion with these patients.’
|
|
Lack of training:
‘Never heard of it before.’
|
‘This survey has made me realize that I need to learn more about the transition process.’
|
‘Transition process should be known and educated.’
|
‘Very important if there are dedicated specialists. We have none in my country.’
|
‘Every doctor should have a training on this transition process.’
|
‘The problem is to think that allergic patients have to be seen by different specialists at different ages but perhaps we should have additional training to clinically evaluate patients of certain ages (children, teens) where some specialists may feel less comfortable.’
|
‘Doctors don't have specific training in adolescence medicine.’
|
|
C. Importance of transition
|
‘Vitally important and should be addressed.’
|
‘Should be widely available.’
|
‘Should be implement in all clinic seeing allergy patients.’
|
‘The transition process is very important, we are currently working on a special transition program in our hospital.’
|
‘Disheartened we don't have one.’
|
‘It is probably a luxury! There is so little basic allergy service for adults/ children in our area that I feel they needs to be sorted first. Although I agree effective transition is very important abs would hugely help.’
|
‘We are in a process where we plan to do transition a high priority.’
|
‘It is critical that comprehensive and age appropriate services are developed for adolescence as this is the age group where they are most likely to be at risk, particularly if they have life threatening allergy. More needs to be done for this age group.’
|
‘It is very important transition because this category of patients is not very compliant...’
|
‘Transition process should be kept on high level of awareness.’
|
‘It is very important, we should pay higher attention.’
|
|
‘There should be alignment across practices, health systems, countries.’
|
‘There is a lot of talk about addressing it, but very little opportunity for clinicians to get it right.’
|
‘I will be very happy if our colleges start to think about this process and if we change our practice in order to create and implement transition protocol.’
|
‘You highlighted a very important problem. I hope that these kind of questionnaires will made other doctors think more about this problem, made them do more for this particular group of patients so hopefully after the survey you will be able make a special guideline, algorithm to treat this group of patients better.’
|
|
E. Structure of transition
|
Transition clinic
‘A stand alone service for 16-25 year olds would be very useful.’
|
‘Consider adolescence extending to age 25 with transitional clinic’
|
‘It is a good thought in setting up special service for transition process.’
|
Transition lead
‘Needs dedicated lead and feedback process. Thus one does have the opportunity for meetings between team members on specific cases.’
|
‘All Trusts should employ a dedicated whole time specialist nurse to oversee and support the transition process and ensure that clinicians are supported during process too.’
|
Multidisciplinary team, and joint clinics, feedback between paediatric and adult services
‘I don't transition patients to adults' medical service but I think it's very important to have continuity of the care and collaborations between medical professionals.’
|
‘Ideal for confidence: follow up by a mixed team child/adult.’
|
‘In many cases, a multidisciplinary psychological approach would be advisable.’
|
‘It's very important to have system in place where pediatric and adult doctors collaborate with each other to maintain continuity of the medical care.’
|
‘The lack of collaboration between the specialties of pediatrics and immunoallergy interferes in a negative way in the follow-up and orientation of adolescents.’
|
‘It is important that the teen feels safe, confident and emphathizes with the doctor who has seen him and with the one who will see him going forward, so that adherence to treatment and other measures are appropriate. This is achieved with a good flow between paediatric pneumologist/allergists and adult allergists.’
|
|
F. Preconceptions about transition
|
Transition should happen even if AYA is not moving between medical services
‘The transition process is important for each patient. Even if they are not moving to adult care. Transition is a process of patient learning and self care.’
|
‘Sometimes clinicians think transition is the process of moving between paediatric and adult services rather than discharging back to primary care. The importance of educating young adults about their conditions is underestimated however this is imperative to help them manage their condition, minimise risk and prevent attacks/ anaphylaxis.’
|
‘I think transition to adult services is less important than a transition to adult management of their allergies. I.e. the transition is about reinforcing their independent management rather than about moving them to adult clinics.’
|
There was no need for transition if a HCP sees all ages of patient
‘If the same physician takes care of allergic patients from 0 to 100 years, there is no need for transition and the physician who knows better the disease state of the patient can decide whether it is recommendable to discharge or to continue the follow-up.’
|
‘In an allergy service where patients are seen throughout their whole life this problem is sorted.’
|
‘There is no transition. We see how the patient progresses as a whole from infancy.’
|
‘Allergists should be the specialists who see allergic patients regardless of their age and then there would be
|
no problem with transition.’
|
‘The transition issue does not apply if patients of all ages are seen in a department in a suitable setting.’
|
‘Not applicable for my praxis, we treat and deal our paediatric patients continuously till adulthood.’
|
Seeing the same doctor is important
‘Is important to have same doctor because he knows more well your history.’
|
‘I believe that the best allergy care system is one where an allergist will patient all the time!’
|
|
AYA, adolescent and young adult; HCP, healthcare professionals. Healthcare professionals’ comments were summarised using a qualitative data analysis approach. Text was divided into separate units, coded and summarized as themes in duplicate.
Box 1.
Example of comments from respondents.
Training and challenges for healthcare professionals
A large proportion of HCPs never routinely asked about self-harm, sexuality, depression or drug use (Figure 2,S2). There was the same pattern of responses regarding confidence in asking and giving relevant advice about these areas. For example, HCPs were not very confident and not confident in asking about self-harm (66.6%), sexuality (64%), depression (43.6%) and drug use (41.5%). Some respondents commented specifically about importance of open dialogue with AYA (Box 1).
Seventy six percent of all HCPs reported that they had not received specific training in the care of AYA (Figure S3). Although respondents from clinics for all age groups, compared to paediatric ones, were more likely to have specific training (adjusted regression coefficient 0.033; 95% confidence interval 0.004, 0.062; p=0.027), this also varied significantly by country (Figure S, Table S4). Box 1 summarises respondents’ comments concerning training.
Importance of the transition care
Eighty seven percent reported that they “strongly agree” or “agree” with the statement that transition is important for AYA with allergies and asthma (Figure S5). Of the paediatric HCPs, 64% “strongly agree” with the statement while almost 50% of adult HCPs and HCPs looking after all ages groups chose this answer. The degree to which respondents from paediatric clinics (compared to clinics for all age groups) were more positive about the importance of transition varied by country (Table S5, Figure S6). Notably, only 17% stated that transition is a priority in their country (FigureS5). Specific comments from respondents about the importance of transition care are summarised in Box 1.
Preconceptions and comments about transition process
Some HCPs thought that transition should happen even if AYA was not moving between medical services. However, others commented that they believed that there was no need for transition if HCPs cared for all ages of patients (Box 1).