ENCA 2016 - Genoa - Carine Wouters
•Download as PPTX, PDF•
0 likes•205 views
Transfer and Transition of adolescents and young adults with juvenile idiopathic arthritis in Belgium
Recommended
More Related Content
What's hot
What's hot (20)
Viewers also liked
Viewers also liked (20)
Similar to ENCA 2016 - Genoa - Carine Wouters
Similar to ENCA 2016 - Genoa - Carine Wouters (20)
More from anton gruss
More from anton gruss (15)
Recently uploaded
Recently uploaded (20)
ENCA 2016 - Genoa - Carine Wouters
- 1. Transfer and Transition of adolescents and young adults with juvenile idiopathic arthritis in Belgium Carine Wouters, Pediatric Immune-inflammatory Diseases, Leuven, Belgium ENCA at PRES congress, GenoA, September 2016
- 2. Agenda • Background: transfer and transition • Exploration of the field • Design of a transition program • Evaluation of clinical impact
- 3. JIA in adolescence physical symptoms • e.g. chronic pain, fatigue, limited joints medical regimen • e.g. taking medication, physiotherapy psychosocial problems • e.g. risk for restriction in social activities parental care • e.g. balance autonomy/protection JIA impact identity development changing social landscape changing familial relationships changing peer relationships emerging individuation emerging autonomy Adolescence: developmental tasks
- 4. Terminology • Transition : the process by which adolescents and young adults with a chronic childhood illness are prepared to take charge of their lives and their health in adulthood. • Transfer: defines an event through which adolescents and young adults with chronic physical and medical conditions move their care from a pediatric to an adult health care environment.
- 5. Transition and Transfer paediatrics adult health care TRANSITION PROGRAMME personal development role of parents transfer While, A., 2004 transition
- 6. Aim of a transition programme • Prepare young adults for increased responsibility for their health and self-care • Provide uninterrupted health care that is patient- centered, age- and developmentally appropriate, flexible and comprehensive • Gather in-depth knowledge about the disease and drugs • Evolve to active (instead of passive) participation in decision taking
- 7. Exploration of the field feasibility components guidelines effectiveness intervention replication other settings consensus statements research TP exploration
- 8. Exploration: research questions RQ 1: What is the current attitude of rheumatology practitioners in Europe on transfer and transition? RQ 2: In which setting are patients with JIA followed-up after leaving paediatric rheumatology? RQ 3: What does it mean to grow up with JIA? RQ 4: What are the experiences and expectations of young adults with JIA concerning the transfer from paediatrics to adult-focused care?
- 9. RQ 1: Attitude of rheumatology practitioners in Europe on transfer and transition? n = 133 QUARTT: Questionnaire about Attitudes of Rheumatology Practitioners toward Transfer and Transition Valencia Paediatric Rheumatology European Society
- 10. paediatrics adult health care transfer transition RQ 1: Attitude of rheumatology practitioners in Europe towards Transfer: • adult rheumatologist (87%)destinations of care • paediatric rheumatologist • reaching certain age initiators for transfer • transfer meeting with the patient • referral letter • transfer medical file transfer communication tools
- 11. paediatrics adult health care transfer transition RQ 1: Attitude of rheumatology practitioners in Europe towards Transition: participants in transition transition barriers patient education transition components • paediatric rheumatologist • adult rheumatologist • parents • nurse specialist • social worker • physiotherapist • ophthalmologist • medication and side effects • general health issues • sexual issues and pregnancy • education & jobs • promotion independence • dealing with fatigue • medication adherence • meeting peers • limited time • unavailability of a transition coordinator
- 12. paediatrics JIA patients followed at pediatric rheumatology clinic (n = 44) RQ 2: Adolescents with JIA, who cares after the age of 16 ?
- 13. paediatrics FU rheumatologist FU general practitioner No medical FU JIA patients followed at pediatric rheumatology clinic (n = 44) RQ 2: Adolescents with JIA, who cares after the age of 16? • Clinical disease activity • General health status • Function and quality of life
- 14. RQ 2: Adolescents with JIA, who cares after the age of 16 ? paediatrics FU rheumatologist FU general practitioner No medical FU JIA patients followed at pediatric rheumatology clinic (n = 44) • on medication for JIA • worse general health • more limitations and more pain • worse quality of life • many in remission • 20% with mild disability • 40% with mild/moderate pain 57% 13% 30% Adolescents with persistent disease and functional limitations tend to remain in rheumatology circuit JIA is not necessarily controlled for all patients leaving medical care
- 15. paediatrics adult health care transfer 55 n = 15 growing up with JIA o qualitative study using in-depth interviews o young adults with persistent severe JIA o in FU at adult rheumatology department in Leuven RQ 3: What does it mean to grow up with JIA?
- 16. RQ 3: What does it mean to grow up with JIA? Physical impact • functional limitations • pain • fatigue Medication • adherence difficulties • side effects Relationships & Family • role as family member • pregnancy, raising children Friends • friends who understand • making social contact can be difficult Future • evolution of disease • what to expect?
- 17. RQ 4: Experiences and expectations of transfer from paediatric to adult care? Good preparation Voice in parental involvement To an adapted setting for adolescents Young adults with severe JIA followed at Leuven university n = 15
- 18. Exploration: conclusions Essential in TP: gradual transition towards adult rheumatology clinic Important components in TP: transition coordinator information and education on medication information about and contact with adult rheumatology programme dealing with fatigue, school, friends meeting with peers addressing parents
- 19. Leuven Transition programme effectiveness intervention replication other settings • Designed as a brief intervention • Series of structured conversations (2 to 5) with patients and their parents start at age 15-16, stable disease activity • Focus on o adequate integration of condition in their lives o enhancing motivation for appropriate health behaviours o engagement in healthcare services
- 20. Leuven Transition program: aims effectiveness intervention replication other settings Improvement of physical, psychosocial and arthritis-specific health of adolescents with JIA Improvement of medication adherence illness-related knowledge quality of life and fatigue parenting concerns and behaviours
- 21. Steps en components Design of a transition programme paediatrics adult 5ealth care transfer 1 2 3 4 5 transition coordinator information & education availability by telephone contact adult rheumatology programme guidance parents meeting peers transfer plan transfer to adult rheumatology programme
- 22. Transition Programme First consultation with family • Introduction transition coordinator • Getting to know the young person & parents • Education JIA & medication + weblinks/written information • Treatment plan & follow-up Addressing the parents • Communication gradually shifts from parents toward adolescent • Support to facilitate gradual detachment: → set up time alone with the parents, agree on shared goals transfer Outpatient visit Outpatient visit Ado-info day Transfer plan Outpatient visit Paediatrics Adult health care Transition Programme outpatient visit 1
- 23. Transition Programme • Focus on health behaviour, fatigue, school, friends, self-image, knowledge about disease, difficulties with medication adherence • Adolescent communication using HEEADSSS tool • Home & Environment • Education & Employment • Eating & exercise • Activities & peer relationships • Drugs/cigarettes & Alcohol • Sexual Health, contraception • Suicide/spirituality/sleep • Social Media transfer Outpatient visit Outpatient visit Ado-info day Transfer plan Outpatient visit Paediatrics Adult health care Transition Programme outpatient visit 2
- 24. Adolescent-info day • informal get-together • parallel programmes: adolescent – parents • meeting with peers • meeting adult rheumatology team • orientation tour at adult care facilities • workshop on psychological issues • cooking workshop transfer Outpatient visit Outpatient visit Ado-info day Transfer plan Outpatient visit Paediatrics Adult health care
- 26. Transition Programme • Individual transfer plan in electronic medical record • Communication (multidisciplinary care team, GP) Transfer plan
- 27. Transfer outpatient visit • Transition coordinator, adolescent and parents, adult rheumatologist • Patient is formally handed-over to adult rheumatology team Ouptient visit Paediatrics Adult health care
- 28. Outcome variables and instruments adolescent parent Health status (PedsQL) (generic & disease specific) Health status (PedsQL for parents) (generic and disease specific) Medication adherence (VAS, SHCS-AQ) Support of autonomy (Autonomy Support Scale) Ilness-related knowledge (modified PKQ) Promotion of independence (PI Scale) Global quality of life (LAS) Psychological control (PC Scale) Fatigue (MVI-20) Impact of a transition programme
- 29. Longitudinal study Patients 35 JIA patients and parents 14-18 y. T0 T2 Impact of a transition programme
- 30. Patients JIA patients and parents with TP compared to JIA patients and parents without TP T2 T2 Impact of a transition programme Comparative study
- 31. Positive effect Negative effect Impact of a transition programme: outcomes
- 32. Adolescents medium positive effects ‘psychosocial health’, ‘treatment’ small positive effects ‘communication’, ‘daily activities’, ‘physical health’ ‘pain and hurt’ Effects of a transition programme: Primary outcome: health status (PedsQL)
- 33. large positive effect quality of life small positive effects illness-related knowledge, activity, motivation general, mental and physical fatigue Effects of a transition programme: Secondary outcomes adolescents
- 34. Small to medium positive effects autonomy support, promotion of independence behavioural control Variable effects worry, pain and hurt, psychological control communication Effects of a transition programme: Secondary outcomes parents
- 35. Impact of a transition program: interviews Transition coordinator • personal advisor • psychosocial coaching Parents experiences graduality in responsibility and role awareness of persistent disease concern about evolution and future Adolescent- information day • introduction to adult team • feelings of fellowship and reassurance Illness-related knowledge little improvement, no major interest to visit illness-related websites/information vs interaction TC
- 36. Conclusions A brief transition programme for adolescents with JIA was developed, found to be feasible and well received. A transition coordinator, a coordinated and organized programme are essential. The transition programme was associated with improved physical & psychosocial and health status, quality of life and parenting style. Some improvement of illness-related knowledge, but no effect on medication adherence was seen. Involvement from young teenage life on may be important.
- 38. http://www.kuleuven.be/switch2/ Self-management and Well-being Improvements by Transitioning adolescents with Chronic disorders in Hospital and at Home
- 39. Transition Programme transfer Outpatient visit Outpatient visit Ado-info day Transfer plan Outpatient visit Paediatrics Adult health care Consult voorbereiding www.opeigenbenen.nl
- 40. RQ 3: What does it mean to grow up with JIA? Physical impact • functional limitations • pain • fatigue Medication • adherence problems • side effects Relationships & Family • role as family member • pregnancy, raising children Friends • friends who understand • making social contact can be difficult Future • Evolution of disease • What to expect?
- 41. Adolescents medium positive effect ‘psychosocial health’ small positive effects ‘daily activities’, ‘physical health’ ‘treatment’, ‘communication’ Impact of a transition programme Comparative study
- 42. Adolescents small positive effects ‘activity’, ‘motivation’, ‘quality of life’ ‘mental’, ‘general’ and ‘physical fatigue’ Impact of a transition programme Comparative study
- 43. Parents medium positive effects ‘worry’, ‘behavioural control’ small positive effects ‘treatment’, ‘autonomy support’ small negative effects ‘autonomy support’, ‘psychosocial health’, ‘physical health’ medium negative effects ‘promotion of independence’ ‘psychological control’ large negative effect ‘communication’ Impact of a transition programme Comparative study
Editor's Notes
- Thank you for inviting me to this interesting session, My pleasure to share with you our experience with a transition programme, which we developed and currenly apply in Leuven, Belgium
- We are aware that different models of transition exist, and no evidence that any is superior to others The current programmes vary from one or two joined clinics with adult rheumatology, to a long stage of adolesent clinics (starting at 16 and going up to 24 yrs) I will briefly mention the concepts of transition and transfer how we first explored the field before actually designing a transition program and how we evaluated its clinical impact Juvenile idiopathic arthritis (JIA) is a chronic disease characterized by persistent joint inflammation; This disease covers several types… Periods of active and inactive disease Complete remission is a goal not always achieved 30-50% continues to have active disease in adolescence
- All young people have developmental tasks to fulfill during adolescence: identity development, coping with a changing social landscape, changing familial relationships and changing peer relationships. Furthermore, they need develop a sense of autonomy and individuation. Adolescents with JIA do experience the impact of JIA on their lives. These include physical symptoms the need to take medication, risk for restriction in social activities which can lead to psychosocial problems the possibility of overprotective parental care To support our patients to deal with these challenges, both related to developmental issues and the impact of JIA is the provision of guidance during this transition to adulthood and the transfer to adult care.
- Transition is a staged process As opposed to Transfer is a event
- It may take two to three years for patients to move through the process from pediatric to adult care A transition programme can assist adolescents in increasing their personal development and prepare parents for their changing role in the care for their child In which they gather knowledge about disease and drugs, and In which During childhood, a child is treated in most appropriately in paediatric care. and at the age of 16 – 18 years, the adolescent should transfer to an adult rheumatologist.
- The transition process may take 2 to 3 years and aims to Start to prepare, Though provision of With focus on gathering knowledge – stimulation to active participation
- We first explored the field, and consulted existing guidelines, consensus and research data in the field of transition, in different chronic conditions In the theoretical phase, guidelines, consensus statements on transfer and transition were explored as well as previous research on transition programmes. This exploration was very instructive to form a theoretical basis but still there were some unanswered questions concerning the development and evaluation of a transition programme for young people with JIA in the belgian setting.
- In the next stage, we more tried to get an answer to some open questions concerning transtion in pediatric rheumatology in europe and more specifically in Belgium explored transtion in Pediatric Rheumatology In these open questions we explored the perspectives of health care professionals as well as young people.
- We first wished to know overall attitude of rheumatology practitioners across europe We asked ped rheumatologists at the PRES congress in Valencia (2010) to complete a questionnaire Answers from 133 rheumatology practitioners completed this questionnaire. W At the paediatric rheumatology European society congress in 2010 in Valencia, we asked rheumatology practitioners to complete the QUARTT. This is an instrument that we developed and previously tested on validity
- Concerning transfer we found Most doctors agreed that patients should be referred to an adult rheumatologist. They found that the paediatric rheumatologist should initiate the transfer, and patients needed to reach a certain ag And further agreed that transfer meetings with the patient, a referral letter and a transfer of the medical file are essential transfer communication tools
- Concerning transition, Most doctors agreed that the participation of different member of a multidisciplinary team is essential The most important barriers experienced were ;… They mentioned that patient education, provided in a transition programme, should contain a spectrum of disease-related themes. Finally, Promotion of independence, dealing with fatigue etc were considered to be crucial transition components
- We then asked a number young people, previously followed at paediatric rheumatology clinic of the university hospitals Leuven who was taking their care
- To know more about their clinical profile (and assess whether the setting of FU was apppropriate), we also asked some questions related to their clinical disease activity their general health satatus therir functional status and quality of life In order to know more about their clinical profile and to assess if the setting of follow up was appropriate we collected demographic and clinical variables, we assessed their general health status, functional status and quality of life
- More than half were in follow up with the rheumatologist, these were patients who needed specific medication and reportedly had worse general health status, were more disabled and more pain Up to 30% was no longer in medical follow up. many were in remission but 20 % of these young people reported mild disability and 42% of them perceived mild pain. In conclusion, it appeared The patients who needed specific medication to treat JIA were found to be in FU with the rheumatologist. The patients in follow-up with the rheumatologist were found to have worse general health status, were more disabled and reported more pain than patients in the other settings. Furthermore, their QoL was significantly lower than controls. Out of this study we learned that an essential step in our TP should be that we tend to keep the right patients in the rheumatic circuit. Establishing a transfer to the adult rheumatologist might be conducive to stay in rheumatic follow up, when needed. The transition coordinator might play an crucial role in the organisation of the transfer and the development of a transfer plan, with attention to the psycho-social points of interest.
- In the next steps we focused on the perspectives of the young people We performed a qualitative study in which we conducted in-depth interviews with 15 patients with persistent severe JIA who were currently in FU in adult rheumatology care. First we asked them their experiences on growing up with JIA. Ages between 18 and 30 years For this study we focussed on a specific subgroup of patients with JIA because we hypothesized the impact of the disease and the transfer to be the largest in this population.
- From these interviews, five main themes emerged: Growing up with JIA has a clear physical impact : they suffer from fatigue and functional limitations Young adults and Adolescents (and not just their parents) wonder about side effects of their medication and admit us that they are not always so adherent Some young adults have doubts/questions on their role as a family member and are concerned about having children in the future Most JIA young adults have friends who understand their situation, although making social contact is sometimes difficult. Finally, many reported to be concerned about their future and the evolution of their disease. Growing up with JIA has a physical impact as well as impact on medication, relationships and family, friends and perceptions of their future.
- Then we asked them on their experiences and expectations related to transfer to adult care. Three important themes emerged 1. Patients want to be prepared to this transfer moment, 2. They want to have a voice in the decreasing parental involvement 3. They would like to be transferred to an adapted setting for adolescents. Finally, patients want to move, and these aspects to be adressed through a gradual process. Experiences and expectations concerning transfer: 3 main themes were identified: preparation to transfer, parental involvement and an adapted setting for the adolescents
- From this exploration and interviews, we learned that Transition needs to be a gradual process And comprise involvement coordinator thorough info/knowledge on disease and drugs information on the adult rheum programme help to deal with fatigue, facilitate meeting with peers time for parents portancce of transfer, esp for patients with active disease Concerning transfer, 3 main themes were identified.... Participants stressed the need for gradualness. So, gradual transition outpatient visits seemed to be an essential step in our TP as well as an ado-info day which will enable our patients to discuss their concerns with other afflicted patients of the same age. Numerous components of future TP were identified in this qualitative study, such as...
- So we designed a transition programme as a brief and comprehensive intervention using a series of structureed interviews start at 15 and only if patient is well, has gone through puberty, psychologically adjusted focusing on integration, motivation, engagement important here to mention: early start: let patients become involved in their own care from early on in teenage life (12-14) do things in a coordinated and organised fashion Transitions programes are developed and implemented Studies show positive effect on QOL, level of knowledge, follow-up in documentation, adolescent readiness and parental needs Evaluations mostly performed in UK Necessity of comprehensive approach: costly and time-intensive Therefore as a brief intervention Based on prior work in field of substance use: intervention designed as a series of short, structured conversations with, focusing on
- Our aims were To improve health To help improve …adherence, etc..; Transitions programes are developed and implemented Studies show positive effect on QOL, level of knowledge, follow-up in documentation, adolescent readiness and parental needs Evaluations mostly performed in UK Necessity of comprehensive approach: costly and time-intensive Therefore as a brief intervention Based on prior work in field of substance use: intervention designed as a series of short, structured conversations with, focusing on
- As shown here, our transition programme comprises 5 steps in which a series of key components are included - essential is transition coordinator: info and education, available by phone, assist the parents - after the adolescent info day, allowing meeting with peers and contact with the adult rheum programme and when the patient feels ‘ready’ - a transfer plan is made up and the patient will be transferred, in company of transition coordinator, Our brief TP included the following key components. …. were the first 4 components, which were included in these intervention steps A transition coordinator is the person providing information, eduction about JIA and medication….etc 1. introduction of transition coordinator (specilaizd nurse) 2. information and education with focus on health behavious The final 4 components were…., and which were also provided at the following steps of our TP after 3. adolescent information day 4. redaction of transfer plan, including transfer of medical file which is easy in our shared hospital information system only if ‘transfer readiness’ 5; transfer to adult rheumatology clnic lunder guidance of TC
- At the first outpatient visit, the coordinator is introduced and takes time to know the person and parents she reviews the knowledge on disease and drugs, and provides webinks/written information she discusses the treatment plan and follow-up visit Adressing the parents is essential to allow for the communication to shift gradually to facilitate a gradual detachment to this end, the coordinator spends time with parents – tries to define and agree shared goals
- The second visit aims to go more in-depth, focusing on …. Here the HEEADSSS tool is used - a psychosocial assessment guide,- to address and conduct a comprehensive history and health risk assessment in a young person it provides a format for a preventive health check it provides information about het young person’s funcitoning in key areas of life: such as…. health behaviour HEEADSSS – structured psychosocial interview designed for adolescents
- After two visits with the coordinator, the adolescent and parents are invited to a ado-info day set up as an informal get-togehr with parallel programmes allowing meeting with peers and adult team it comprises a orientation tour, a workshop on psychological issues, and a …
- Just to give an impression….
- In the next stap a written transfer plan – adapted to individual patient – is made and implemented in the electronic medical record so allowing communcation between members of multidiscipinary team and the treating physican
- Finally, together with the transition coordinator, the patient and parents visit the adult rheumatoloy And patient is formally handed-over
- After implementation, we were interested to know the impact of the transition programme and set up a study exploring the effects, their clinical relevance (using a quantitative approcch) as well as a qualittaive study (interviews) aiming to understand the effects, and test the feasibility of the key components As shown here, we looked a a wide set of variables in patients and in parents, and used different measurement tools health status of the adolescents was defined as the primary outcome f We evaluated this complex intervention with a mixed methods approach. We conducted a quantitative study exploring the effect sizes and clinical relevance PLUS a qualitative study where we aim to understand the effects and test the feasibility of the key components of the intervention. In the quantitative study we applied a one-group pretest-posttest, with a non-equivalent posttest only comparison group and in the qualitative study, we used an explanatory design. This slide shows the variables that we studied in patients and their parents and the measurement instruments we used. Health status in adolescents was defined as primary outcome.
- In the longitudinal study, 35 patients/parents were included who participated in the transition program over a period of 2 years. They were assessed at three time points T0 : baseline : first outpatient visit T1: second outpatient visit in pediatric rheumatology T2: first outpatient visit in adult rheumatology, after transfer Median duration between baseline and second T1 visit was 6 months The median duration between the second T1 visit and the first visit to adult rheumatology was 9 months To evaluate the impact of the TP, we looked at effect sizes for the differences between T0 (before intervention) and T2 (after intervention) we assessed the changes of our variables over a time. We looked for effect sizes rather than statistical differences and in the longitudinal analysis
- We were also curious to know whether young people who went through a transition programme had better outcomes than patients who had been transferred without transition (previous years) Therefore, in a comparative study, we compared the outcome variables of the patients of the transition group after transfer (at T2) with those of a comparison group that had not been prepared to transfer. We matched 25 JIA patients of the comparison group with the intervention group on JIA subtype and sex. disease activity, medication prescription,
- The complete results of both analyses are summarized in this figure, and we will review them in the following slides: As you can see, The primary outcome was the self-perceived health status of the adolescents as measured with the pediatric quality of life inventory (PedsQL) Furthermore, a list of secondary outcome variables was assessed in both adolescents and parents. We then calculated effect sizes for observed differences for all outcome variable Variables without any effect are shown in the middle. Positive effects are showed on the right hand side. We distinguished between a small, medium and large effect. (depending on the Cohen’s value) Conversely, negative effects are seen on the left hand side First, our primary outcome, which was evaluated in adolescents, was health status. Negative effects are showed on the left hand side with also a difference in the magnitude in the effects.
- This figure shows results related to adolescent health status, our primary outcome, from both the longitudinal and comparative analysis indicated by trianglses (longitudinal) and asterisks (comparative one) As you can see, For the primary outcome –( variables of the pediatric quality of life inventory ) moderate positive effects were seen related to …. small positive effects were observed related to…. Looking into these results with more detail
- This figure shows effect sizes of differences in secondary outcomes in adolescents... triangles indicating longitudinal differences, asterisk comparative differences A large positive effect was found concerning : the improvement of patients ‘ quality of life And a small improvements were observed in: illness related knowledge, improved daily activities, However, there was a small negative effect observed for the reduction of general fatigue (longitudinal only)
- Focussing on parents, evaluation of the changes in outcome variables showed: Increased autonomy support, increased promotion of independence and reduction in behavioural control these were small effects in longitudinal, yet moderate effects in comparative study However, for a number of outcomes, variable effects were found in the longitudinal study small negative effects were observed in reduction of worry, pain, and hurt psychological control conversely in the comparative study there was positive effect on reduction of worry and a negative effect on communication
- In a attempt to understand the observed effects, interviews were performed In these we learned 1, The presence of a transition coordinator during the whole transition process as a personal advisor and coach in psychosocial issues was experienced as beneficial. Adolescents were delighted about opportunity to discuss (problems with) sports, school, friends, medication adherence. TC was considered a personal advisor with extra attention for psychosocial coaching and authentic comprehension of their feelings and concerns Concerning the absence of any effect on medication adherence, the adolescents say that they try to assume responsibility for medication intake, but many of them continue to rely on parents to prepare medication and to remind them to take it. 2, The TC explained illness, and referred to illness related websites, however for both patients and parents , there was little improvement in knowledge Most adolescents preferred not to be reminded of their disease esp when stable/remission. Some parents expressed angst for possible negative information They expressed preference of oral information by TC (with possibility to interaction 3. Most parents appreciated the clear discussion with the TC about gradually handing over the responsibility for health behavior and disease management, and acknowledged awareness that their child was growing and becoming more mature in this respect Conversely, the transition programme confronted them with the fact that JIA is a disease that can persist into adulthood, medical follow-up is organized because it is needed, and flares can happen does not annihilate concerns about evolution and the adolescent’s future 4, The adolescent information day seemed to be a key component in the interviews: - a look on the adult team and setting (much more serious) with opportunity to ask questions how and where visits in adult dpt take place - contact with peers was key : feelings of identification, confrontation and fellowship - overall reassurance to both adolescents and parents Both parents and patients experienced feelings of confrontation, identification and fellowship when they participated at the adolescent information day. Majority of parents felt their child growin in maturity as positive, but preparation for transfer was also a confrontation with … However confrontation with the fact that their child did not grow out….that medical follow-up indicates potential flares, and need for care, they are concerned about evolution and the adolescent’s future. This contrtibutes to a more negatieve perception of their child’s healthy in comparison to perception of the patients themselves (discrepancies) The parents had ambiguous feelings about their commitment: they found it positive that their child demonstrated a growing maturity.
- Transtion is a staged process as opposed to transfer it should take 2-3 years, patients moving through the process gather in-depth knwledge about disease and drugs evolve to actively (instead of passively) particiation in decision taking To go well through the process patient should be well psychologically adjusted have gone through puberty Important to start early – let patients become involved in their own care from early on in teenage life (12-14 years) Important to do things in a coordinated and organized fashion
- The overall conclusion of my PhD is
- In the results, five main themes emerged: Growing up with JIA has a physical impact as well as impact on medication, relationships and family, friends and perceptions of their future. The physical impact is clearly present: they suffer from fatigue and functional limitations They also have questions about side effects of their medication and admitted us that they are not always so adherent Some of them have difficulties finding their role as a family member and are concerned about having children in the future Most of our participants have friends who understand their situation, although making social contact is sometimes difficult. Furthermore, these patients reported to be concerned about their future and the evolution of their disease.
- Inter-individual results are based on the comparative matched analysis. When we look into our primary outcome a medium...
- When we look to our secondary outcomes in the adolescents...
- Focussing on parents, evaluation of the secondary outcomes showed...