ANALIZAR LA NUEVA FORMA DE MEDICIÓN AL VALOR RAZONABLE

Introducing RAiISE - raising awareness of invisible illnesses in schools and education

Sophie Ainsworth1_{, Jenny Ainsworth}1_{, Jennifer Preston}2_{, Simon Stones}1_, Robyn Challinor1, Marie Rowe1

1_{RAiISE, Liverpool, United Kingdom;}2_{Patient and Public Involvement,} Alder Hey Children's Foundation Trust, Liverpool, United Kingdom

Correspondence:Sophie Ainsworth

Pediatric Rheumatology2017,15(Suppl 2):P113

Introduction: RAiISE is a user-led research project inspired by the negative experiences that young people face while studying and liv- ing with an invisible illness. Many young people who live with chronic illnesses look no different to their healthy peers. The invisible nature of some illnesses can often lead to an invisible struggle, lead- ing to misunderstandings, particularly in the case of young people. It can be a huge burden on the chronically ill to make the invisible, vis- ible to others.

Objectives:The main objective of RAiISE is to improve the standard of care given to young people with invisible illnesses in school, col- lege and university and to create a resource to teach education pro- fessionals a series of strategies and techniques to support their students. RAiISE will also offer support to young people with invisible illnesses and aim to empower them to take control of their own health.

Methods:A young patient of Alder Hey NHS Children's Foundation Trust decided to raise awareness of living with an invisible illness. A network of young people, parents, education and health profes- sionals was created and a series of workshop and focus groups allowed each stakeholder to share their experiences and expertise as they inspired and advised the production of the RAiISE information pack. It is important that young people are able to shape research based on their lived experiences. Several international charities and organisations have offered support and knowledge in advising the process.

Results:At early workshop meetings, young people with invisible ill- nesses and their parents were able to offer personal accounts and experiences which highlighted that the most common themes were problems with communication and trust, as well as difficulty in un- derstanding the erratic nature of many chronic illnesses. From this re- search, a draft information pack was written by the RAiISE committee, which was later presented to young people, parents, health and education professionals and charity representatives. All stakeholders were able to offer their expertise from their respective fields. Feedback was overwhelmingly positive and any adjustments are to be made in the coming weeks. The final pack will be com- pleted and ready for distribution by the end of summer 2017.

Conclusion:The project has been a successful example of young pa- tient led research and highlights the importance of self-management

in young people living with invisible chronic illnesses. The collabor- ation between young people, parents, and education and health pro- fessionals has highlighted the necessity for cooperation between all stakeholders for the benefit of the young person.

Disclosure of Interest:None Declared

P114

Development and feasability of a shared management tool for school children with juvenile idiopathic arthritis

Jeannette H. Cappon1_{, Bianca Knoester}1_{, Marion A. van Rossum}2 1

Paediatric Rehabilitation, Reade, center for Rheumatology and Rehabilitation, Amsterdam, Netherlands2_{Paediatric Rheumatology,} Amsterdam Rheumatology and Immunology Center |Reade, Amsterdam, Netherlands

Correspondence:Jeannette H. Cappon

Pediatric Rheumatology2017,15(Suppl 2):P114

Introduction:Health related quality of life (HRQOL) can be severely affected in children with juvenile idiopathic arthritis (JIA). Earlier stud- ies have shown that, amongst other factors, school absence is one of the main predictors of HRQOL in children with JIA[i]. HRQOL is also related to pain intensity and coping strategies.[ii] In young JIA pa- tients (aged 4–9 years) school functioning can be impaired due to pain, fatigue and limited joint function. Adequately coping with these symptoms of JIA during schooldays demands a shared man- agement approach between the young child, parent(s), teacher and health professionals. An instrument supporting young children with JIA in managing their symptoms during schooldays in a structured way was lacking.

Objectives:1. To develop an instrument to support a young child with JIA managing symptoms during schooldays.

2. Implementation and evaluation of the feasability of the developed shared management tool in the rehabilitation program.

Methods:1. Elements necessary in the instrument are elected after consulting parents of young children with JIA and health profes- sionals of Reade multidisciplinary team for children with JIA. With help of a professional designer an instrument is developed to pro- vide a shared management tool for managing symptoms during schooldays.

2. Children with JIA (aged 4–9 years) with problems in school attend- ance and their parents are informed about the instrument and in- vited to use it during their rehabilitation program in Reade. Parents, children and health professionals evaluate the feasability after using the instrument by filling in a questionnaire.

3. Results of questionnaires are discussed in the multidisciplinary team for evaluation.

4. Improvement points for the instrument are proposed.

Results: 1. A personal diary called“Back and Forth Booklet” is de- signed which contains (1) education pages for the child, parents and the teacher about JIA, pain and energy levels and how to manage these, (2) a daily pain measure instrument for location and amount of pain for the child (colour-in pain puppet), (3) a level of energy in- strument for expressing fatigue (image of full/half full/empty glass) (4) space for registration of appropriate alternatives for limited activ- ities by the health professionals or parents, (5) daily feedback spaces for the teacher and (6) a visual analogue (VAS) Likert smiley scale for daily self-evaluation by the child.

2. 9 children and their parent(s), 3 occupational therapists, 3 physical therapists, 1 social worker, 1 psychologist and 9 teachers have used the Back and Forth Booklet. Two parents, two children, one teacher and seven health professionals completed a questionnaire.

3. Evaluation of the questionnaires so far showed that the use of the Back and Forth Booklet contributes in communication about the child’s pain and fatigue among the child, parents, teachers and health professionals. The Back and Forth Booklet facilitates school- teachers in supporting a child with tailored pain and fatigue coping strategies. All users were satisfied with the design. Children appreci- ated the colour-in pain puppet for not having to explain verbally the teacher about their pain.

4. Items for improvement were: (1) Parents need open space for shar- ing daily information with the teacher (2) Occupational therapists suggest extra space for documentation of appropriate alternatives for limited activities.

Conclusion:The“Back and Forth Booklet”is a promising shared man- agement tool, supporting young children to cope with JIA symptoms in school. Small adjustments can improve the feasability.

[i] Haverman et al A&R 2012; 64(5)694-703 [ii] Sawyer et al Rheumatology 2004;43:325-330

Disclosure of Interest:None Declared

P115

A smiling childhood: a social window for families with children affected by chronic rheumatics and rare pathologies

antonella celano, on behalf of apmar onlus, raffaella arnesano, annalisa sticchi, on behalf of apmar onlus and apmar onlus

Italian national Association people with rheumatic and rare diseases, Lecce, Italy

Correspondence:antonella celano

Pediatric Rheumatology2017,15(Suppl 2):P115

Introduction: The Smiling Childhood project was launched by APMAR Onlus, supported by the Valdese Church and their generous 8x1000 funds donation.

The project comes from a long journey undertaken by our associ- ation in order to be closer to people affected by chronic pathologies during their daily lives, defining strategies of inclusion in order to create an understanding atmosphere about Rheumatic Pathologies, who unfortunately are still not very well known nowadays.

Some of these pathologies are diagnosed at a later stage, resulting in a late treatment and in some cases in a great degrade in self- sufficiency.

Objectives:The aim of our project is to offer support for families and develop empowerment over chronic and rare Rheumatic Pathologies in children; giving easier access to information, promoting actions in order to offer an early diagnosis, helping families face the new chal- lenges they will be inevitably exposed to

Methods

The method is to create a partecipative process by involving all pos- sible factors in an active process regarding chronic and rare rheum- atic pathologies in children. We have involved, over the course of the years and through the help of educational and informational workshops, various family members, journalists and paediatricians.

Results: We have therefore been able to build a social window, in collaboration with professional staff, that works overall to make the journey that these families will have to face easier. With the use of this social window, the family nucleus can find information as well as a place to be heard and guided.

Moreover, available to them is also a psychotherapist psychologist, both over the phone or in the form of a private meeting. The clinical instrument used here is the meeting with our staff (both hearing and empathy), and with the use of monitoring sheets, drawings and illus- trations according to the age of the child. At the end of this forma- tive journey, the family will be asked to fill out a survey in order to rate our project.

Our social window is also available online in the form of a blog. Other communication and participation activities take place in local doctor’s surgeries, schools, and with the collaboration of Rheumatol- ogy Paediatricians. We have also developed a comic, ‘A new chal- lenge together’, in order to inform young adults and children on these issues.

Conclusion: The presence of a Rheumatic Pathology can result in heavy effect on the life of a child and its family. These impacts vary depending on the resources that they might have available. May these be ‘external’ (financial and economical, available treatments, network support) or‘internal’(the possession of medical and bureau- cratic information useful to the management of the problem, the re- lationship between the members of each family and their degree of flexibility).

Our project,‘A Smiling Childhood’has kept many families informed, emotionally supported and aware of their internal resources.

Disclosure of Interest:None Declared

P116

Anxiety, depression, and parental perception of uncertainty among parents of children with juvenile idiopathic arthritis in Bogota, Colombia.

Adriana Diaz-Maldonado1,2,3, Sally Pino2,4, Pilar Guarnizo2,5,6, Juan Manuel Reyes2_{, Leonardo Ariza}2

1

Hospital de la Misericordia, Bogota, Colombia;2Care for Kids, Bogota, Colombia;3_{Instituto Roosevelt, Bogota, Colombia;}4_{Hospital San Jose} Infantil, Bogota, Colombia;5Fundacion Cardio Infantil, Bogota, Colombia; 6_{Cayre, Bogota, Colombia}

Correspondence:Adriana Diaz-Maldonado

Pediatric Rheumatology2017,15(Suppl 2):P116

Introduction: Juvenile idiopathic arthritis (JIA) is a chronic illness which affects among 2 – 150 children for 100.000 in Europe and North America, most of them are cared by their parents (1). It has been estimated that parents of a child with chronic illness can present mood problems, cognitive problems, anxiety, high level of distress and lower levels of quality of life (2).

Objectives: Describe the anxiety, depression, familiar functionality and parental perceptions among parents of a child with JIA in Bogotá, Colombia.

Methods:A cohort of parents of children with JIA were approached for this study in Bogota, Colombia. The questionnaires Hamilton rat- ing scale for anxiety (HAM-A), Beck depression inventory (BDI), family APGAR scale, parental perception of uncertainty scale (PPUS), and parental coping strategy inventory (PCSI) were self-administrated. De- scriptive analysis was performed according to the nature of the variables.

Results:Twenty two parents participated in the study characterized by 16 women and 6 men. The average age of the parents was 43.86 years (ranged from 33 to 62 years). Most of them with mild to high income and the 55% of the parents had graduate degrees. Age of children with JIA was 14.95 years (8 to 20 years), 55% were female. The most frequent type of JIA was polyarticular and enthesitis- related arthritis (64%), followed by systemic (16%), oligoarticular (16%) and psoriatic arthritis (5%).

In terms of anxiety, 46% of parents reported having moderate anx- iety. Similar results related to stress were observed. Mild depression symptoms were found in 18% of parents and moderate in 9%. Se- vere and moderate familiar dysfunctionality were reported by the parents in 14% and 36%, respectively. There was not association of familiar dysfunctionality and the number of years living with the dis- ease. However, those parents of children with more than two years of disease present an increase in moderate symptoms of depression. Perception of uncertainty was moderate with mean score of PPUS of 83.85 (SD 15.66). Parents of children with recent diagnosis(less than 2 years) presented higher scores than parents of children which had been diagnosed longer than two years (mean score 88.5 (SD 8.70) vs 80.75 (SD 18.68), respectively). Among parents with higher PPUS score: 89% reported severe or moderate anxiety, 66% reported mod- erate symptoms of depression, and 44% informed moderate or se- vere familiar dysfunctionality.

Being optimistic, learning about the diseases and treatment, and in- teractions with their ill child were the most frequent coping strat- egies used by the parents. However, parents of children with recent diagnosis are more optimistic and interact more with their ill child compared with parents of children which had been diagnosed lon- ger than two years.

Conclusion:This study shows that anxiety and stress in parents of children with JIA is present frequently. Perception of uncertainty, anxiety, and familiar dysfunctionality were observed more frequent and severe in parents of children with recent diagnosis(less than two years). Considering the limitations of the study, in order to alleviate anxiety and depression symptoms on parents, and prevent family dysfunctionality, psychological intervention and participation in

group support are recommended strategies for parents of children with recent JIA diagnosis.

References

1. Ravelli A, Martini A. Juvenile idiopathic arthritis.. Lancet. 2007;369:767– 778. doi: 10.1016/S0140-6736(07)60363-8

2.Murphy

NA, Christian B, Caplin DA, Young PC: The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev 2007, 33:180– 187.

Disclosure of Interest:None Declared

P117

Rehabilitation games for juvenile idiopathic arthritis. Focus on hand and wrist.

Michaela Foà1_{, Rocco M. Chiuri}2_{, Antonella Petaccia}1_{, Fabrizia Corona}1_, Pier L. Lanzi2, Giovanni Filocamo1

1_{Dipartimento della Donna, del Bambino e del Neonato, Fondazione} Irccs Cà Granda Ospedale Maggiore Policlinico, Milano, Italy;

2_{Dipartimento di Elettronica, Informazione e Bioingegneria, Politecnico} di Milano, Milano, Italy

Correspondence:Michaela Foà

Pediatric Rheumatology2017,15(Suppl 2):P117

Introduction:Juvenile idiopathic arthritis (JIA) is the most common chronic rheumatic disease in children and an important cause of short-term and long-term disability.

Physiotherapy and occupational therapy, with the aim to keep or re- store joint function and to achieve a normal pattern of mobility, are important components of the therapeutic approach. In standard physical therapy patients tend to lose interest in the treatment, due to the monotony of the exercises, and as a consequence, patients ei- ther perform their exercises irregularly or quit the physical therapy. In recent years, the introduction of new gaming input devices, such as Nintendo’s Wii Remote™and Microsoft’s Kinect, and the develop- ment of games that involve physical activity, induced the researchers to consider the possibility of using videogames to perform physical therapy.

Objectives:To design a set of rehabilitation games that could help patients affected with Juvenile Idiopathic Arthritis performing their physical therapy.

Methods:A multidisciplinary study group involving paediatric rheu- matologists, physiotherapists and engineers of the Department of Electronics, Information and Bioengineering of the Politecnico of Milan was created.

During the first meeting, the rheumatologists explained the basic as- pects of disease and the principal physical problem observed in pa- tients with JIA; the therapists introduced how the physical therapy for JIA works.

In order to improve the final outcome, engineers used an iterative de- sign approach, that is, they designed the games, and then they followed a cyclic process of prototyping, testing and analyzing designs. The key points on which engineers focused were: the ability of the game to adapt to the capabilities of the patient, the possibility for the therapists to create custom game levels, the need to save every infor- mation about how the patient performs during the exercises and the possibility to see again the exercise carried out by the patient. For this study, the attention was focused on hand and wrist. Four different games to play were developed. For each game was defined a rewarding system that increases the score when the player does something good, but does not decrease it when he/she makes a mistake. The scoring system was also a useful first qualitative feed- back for the therapist about the patient’s performance.

The therapists were asked to create a custom level for the flight simulator game, so she could simulate an exercise performed in a typical training session.

Results:Three poliarticular JIA patients took part to the first experi- mental session. Ten, fifteen and twenty-one years old respectively. The first patient had ankle involvement, while the last two had wrist and small joints of the hand involvement.

Two games were tested on the 3 patients; a flight simulator and a Flappy Bird-like game. The flight simulator, in particular, was tested both with the hands and with the feet.

The feedback from the subjects was quite good; The therapists’feed- backs were also good. The patients enjoyed the exercises much more and “it did not look like they were doing exercises”. The subjects were doing without complaint the same exercises that they found to be boring and difficult during standard physical therapy.

Conclusion:The feedbacks received during the experimental sessions validated the work. The patients liked the games and suggested some additional changes to make them more appealing. The thera- pists also were satisfied with the study design. They were glad to see how easily the patients performed their exercises by playing the games.

In future work it should be possible t dynamically adapt the difficulty during the game in relation to the patients’performances. It would be consider also the possibility to use a webcam to see live the pa- tients while they are playing and to record the patient’s performance, giving the therapist a second visual feedback in addition to the replay.

Disclosure of Interest:None Declared

P118

Rehabilitation games for juvenile idiopathic arthritis. Focus on knee and ankle.

Amalia Lopopolo1_{, Mattia Giannotti}2_{, Antonella Petaccia}1_{, Fabrizia} Corona1, Pier L. Lanzi2, Giovanni Filocamo1

1_{Dipartimento della Donna, del Bambino o del Neonato, Fondazione} Irccs Cà Granda Ospedale Maggiore Policlinico, Milano, Italy;

2_{Dipartimento di Elettronica, Informazione e Bioingegneria, Politecnico} di Milano, Milano, Italy

Correspondence:Amalia Lopopolo

Pediatric Rheumatology2017,15(Suppl 2):P118

Introduction:Juvenile idiopathic arthritis (JIA) is the most common chronic rheumatic disease in children and a cause of short-term and long-term disability.

Physiotherapy is an important component of the therapeutic ap- proach. The rehabilitation process is developed through a series of simple, repetitive exercises to be performed frequently and for a long time. Often patients lose interest and stop performing them before the results have been accomplished.

Recently a new frontier in the design of videogames has been ex-