EFFECTS OF INDIVIDUALIZED EXERGAME TRAINING ON UPPER EXTREMITY PROBLEMS IN ADOLESCENTS WITH JUVENILE IDIOPATHIC ARTHRITIS
Nilay Arman1, Ela Tarakci2, Kenan Barut3, Sezgin Sahin3, Amra Adrovic3, Ozgur Kasapcopur3
1
Faculty of Health Science, Division of Physiotherapy and Rehabilitation, Department of Physiotherapy and Rehabilitation;2Faculty of Health Science, Division of Physiotherapy and Rehabilitation, Department of Neurological Physiotherapy and Rehabilitation;3Cerrahpasa Medical Faculty, Department of Pediatric Rheumatology , ISTANBUL UNIVERSITY,
İSTANBUL, Turkey
Correspondence:Nilay Arman
Pediatric Rheumatology2018,16(Suppl 2):P363
Introduction: Juvenile idiopathic arthritis (JIA) is most common chronic rheumatic disease in childhood. The upper extremity involve- ment in JIA causes muscle imbalance, joint destruction, pain, stiffness and limitations on activities of daily living in varying degrees. It has been reported that improvements of upper extremity functions were achieved by exergame training in various disease groups.
Table 1 (abstract P362).Overview of the observational adverse events per 100 PYs Fixed-dosing ADA±MTX (N=272) BSA-dosing ADA±MTX (N=263) PYs=1076 PYs=940.8
E (E/100 PYs) E (E/100 PYs)
Any AE 453 (42.1) 358 (38.1)
AE at least“possibly drug related”
per the investigator
155 (14.4) 101 (10.7)
Severe AE 47 (4.4) 26 (2.8)
Serious AE 56 (5.2) 92 (9.8)
AE leading to discontinuation of study drug or study
27 (2.5) 34 (3.6)
Infectious AE 160 (14.9) 119 (12.6)
Serious infectious AE 24 (2.2) 20 (2.1)
Injection site-related AE 18 (1.7) 20 (2.1)
E, events; PYs, patient years (Observation time, irrespective of study drug treatment duration)
Objectives:The aim of this study was to investigate effects of indi- vidualized exergame training on upper extremity problems in adoles- cents with JIA.
Methods: 18 patients (15 girls, 3 boys) with JIA (8 oligoarticular, 18 polyarticular) who have at least one involvement upper extremity joint, participated in this study. Muscular strength of upper extremity was measured by using a portable digital handheld dynamometer. Also, Range of Motion (ROM) of upper extremity was evaluated with a uni- versal goniometer. Severity of pain (during exercise, activity and rest), fatigue and stiffness were measured by Numeric Rating Scale (NRS). Be- sides, CHAQ was used for assessing functional ability. Training was structured in two 4-weeks phases with Xbox KinectTMGames, allowing to adapt the training according to individual training progress. In the first four weeks, games included movement patterns with low fre- quency were preferred (Volleyball, Darts and Bowling). In the second phase, games with fast movements for endurance were preferred (Fruit Ninja, Table Tennis, Boxing). The games were set as Individualized for 45-60 minutes by the physiotherapist. All the participants completed an 8 weeks (3 times in a week) individualized exergame training program. Results:The mean age and duration of disease was 13.89±2.13 (age range 12-18), 7.50±4.27 years, respectively. 16 of patients had bilaterally involvement of wrist joint and 15 of them involvement elbow joint (7 bilaterally, 8 unilaterally) and 11 of them also had finger involvement. Statistically significant differences of pre and post-treatment were found for almost all the scores of ROM, CHAQ and NRS, except some scores of finger ROMs (p<0.05). And also, all muscles strength of upper extremities were statistically significant increased (p<0.001).
Conclusion: Our exergaming protocol that included Xbox KinectTMGames has showed improvements on pain, fatigue, stiffness and upper extremity functions in adolescents with JIA. The results of this study that the integration of exergame with Xbox KinectTM
Games seems to have positive effects on upper extremity and is thus potentially beneficial for the long-term effectiveness of rehabilitation programs in adolescents with JIA.
Disclosure of Interest None Declared
P364
TUTTI ALLA PARI - SENSITIZATION PATH FOR SOCIAL INCLUSION OF CHILDREN WITH CHRONIC AND RARE RHEUMATIC DISEASES Antonella Celano, Francesco La Torre, Adele Civino, Raffaella Arnesano, Annalisa Sticchi
Italian national Association people with rheumatic and rare diseases, lecce, Italy
Correspondence:Antonella Celano
Pediatric Rheumatology2018,16(Suppl 2):P364
Introduction:“Tutti alla pari”is a project made by Apmar Onlus. From the analysis of family and kids needs, it comes out that it’s difficult for a kid to feel himself involved in the society system. It is not rare that the kid with a rheumatic disease is socially excluded and sometimes bullied. Involve kids with disabilities is a challenge that can be won focusing on competence and collaboration. Differences must be accepted at school first by the activation of inclusive paths.
Objectives: Developing an empowerment path, starting from young people, to build up a most respectful and inclusive society; defining a common strategy to fight social exclusion of people with chronic dis- eases, especially children.
Methods:Create a participative process and an active involvement of so- cial and institutional actors that take care of border risking minors. It in- volved pediatricians, parents, formers and journalists, through punctual, sensitizing and informative actions. 15 communication experts, 20 pediatri- cians, 18 formers and 25 parents took part in 3 participative labs. After those workshops a handbook that collects the“best practices for social in- clusion”was realized and It was spread in 20 school and in 25 regional as- sociations of patients with chronic and rare pathologies. The identified method aims to create a participative process and an active involvement of all social and institutional actors, that take care of border risking minors. It’s
been involved paediatricians, parents, formers and journalists, through punctual, sensitizing and informative actions. 15 communication experts, 20 paediatricians, 18 formers and 25 parents have been involved in 3 participa- tive labs. Their participation gave birth to the realization of a handbook that collects the“best practices for social inclusion”, that was spreaded in 20 school and in 25 regional associations of patients with chronic an Results: Involving the youngest: experience labs organized in 16 schools through which kids could put themselves in a peer with rheuma- toid arthritis’shoes. By wearing gloves and special suits they experienced all the functional limitations of the disease. The action had important feedbacks, collected in written witnesses and videos elaborated by kids. Formers involvement: 3 didactic seminars were realized about the social inclusion and the involvement of kids with chronic and rare pathologies. Bullism and cyber bullism and other topics were treated during those meetings dedicated to family and teachers. The semi- nars, attended by 200 people, have been developed by qualified pro- fessionals (psychologists, communication experts, journalists). Activities monitoring: It aimed to measure the efficiency of the in- volved resources and the effectiveness of interventions related to the targets. It all started from the logistics of the intervention and the analysis of activities to elaborate monitoring schedules, addressed to the internal staff of the project, and questionnaires addressed to both direct and indirect targets.
Conclusion:To modify cultural attitude towards disability we must know what it means, through empathy, positive inclusion and re- spect. This kind of engagement is a priority in schools, in extra famil- iar, work and extra scholastic contexts. It must involve specialized staff to stay in touch with families, doctors and associations.“Tutti alla pari”showed how this target should be reached, through hetero- geneous competences and multi-skilled professional resources. Disclosure of Interest
None Declared
P365
BUILDING A MULTIDISCIPLINARY TRANSITION CLINIC FOR ADOLESCENTS WITH RHEUMATIC DISEASES.
Nadina E. Rubio-Perez1, Ana C. Arana-Guajardo2, Fernando Garcia- Rodriguez1, Ana V. Villarreal-Treviño1, Antonio Lopez-Rangel3, Oscar Salas- Fraire4, Patricia Ancer-Rodriguez5, Maria E. Corral-Trujillo6, Juan G. de la Cruz-Gonzalez7, Dionicio A. Galarza-Delgado6, Manuel E. De la O-Cavazos1 1Pediatric Rheumatology, DEPARTAMENTO DE PEDIATRIA, HOSPITAL UNIVERSITARIO "DR. JOSE E. GONZÁLEZ", UANL;2Rheumatology; 3Psychiatric Department;4Rehab and Sports Medicine, HOSPITAL UNIVERSITARIO "DR. JOSE E. GONZÁLEZ", UANL;5NUTRITIONAL SERVICE; 6Rheumatology;7Rehab and Sports Medicine, HOSPITAL UNIVERSITARIO "DR.JOSE ELEUTERIO GONZALEZ", Monterrey, Mexico
Correspondence:Fernando Garcia-Rodriguez
Pediatric Rheumatology2018,16(Suppl 2):P365
Introduction: Adolescence is a critical period in lifetime when pa- tients with a rheumatic condition (RC) has to deal with disease ac- ceptance; therefore, an uninterrupted and adequate attention must be provided to this population. Different transition programs (TP) are currently working around the world however, a minority of those in- clude a multidisciplinary team to conduct transition.
Objectives: To describe a program that provide an uninterrupted, multidisciplinary and coordinated attention to adolescents with RC during transition from pediatric to adult services in Mexico.
Methods: During January 2017, a multidisciplinary group of specialist from our hospital were invited to participate in TP. Disciplines included in the team were decided by consensus of pediatric and adult rheumatolo- gist with the aim of cover the most important issues that affects outcome in adolescents with RC.
From February to June 2017, we conducted systematic meetings to discuss logistic/organizational aspects, evaluation tools, and estab- lished goals and time that patients should stay in the program. A transition strategy was created based on literature, general TP and reports from other transition clinics.
Results:Adult and pediatric rheumatologists, sports medicine, psych- iatrist, nutritionist, clinical psychologist, nurse, and social services in- tegrated the team. Got Transition questionnaire evaluated transition skills of adolescents during TP.
TP beginning at Pediatric Rheumatology Clinic (PedRh, pre-transition), following by a Transition Clinic (TC) where skills (Sk), counseling (Co), multidisciplinary attention (MA), workshops (Wo), and psychosocial sup- port (Psy) are offered to adolescents and families. Finally, post- transition follow-up at Adult Rheumatology Clinic once the patient were ready to transfer (Table 1).
During TC, visits are planned to be every 3 months unless closer fol- low-up where necessary. All specialists evaluate the patient every visit and meetings are conducted once a month to discuss cases and established strategies/goals for each patient.
Despite planned period to stay in TC are two years, it depends on skills that each patient demonstrate during TP, therefore, some could maintain at the same phase more than one visit to assure success of program. Conclusion:Here we shown the structure of an organized, special- ized, multidisciplinary, integrated, and reproducible TP for adoles- cents with RC.
Disclosure of Interest None Declared
P366
PERCEPTION OF TRANSITION AND SELF CARE SKILLS IN
ADOLESCENTS WITH RHEUMATIC DISEASES AND THEIR PARENTS. Fernando Garcia-Rodriguez1, Elias E. Uresti-Arriaga1, Ana V. Villarreal- Treviño1, Jesus D. Muñoz-Zepeda1, Ana C. Arana-Guajardo2, Dionicio A. Galarza-Delgado2, Manuel E. de la O-Cavazos1, Nadina E. Rubio-Perez1 1Pediatric Rheumatology, DEPARTAMENTO DE PEDIATRIA, HOSPITAL UNIVERSITARIO "DR. JOSE E. GONZÁLEZ", UANL;2Rheumatology, HOSPITAL UNIVERSITARIO "DR. JOSE E. GONZALEZ", Monterrey, Mexico
Correspondence:Fernando Garcia-Rodriguez
Pediatric Rheumatology2018,16(Suppl 2):P366
Introduction: Through their lifetime, young people with chronic conditions will experience a transition from pediatric care to adult care facilities; this is an important period for the patients since now they will have to take care of themselves.
The main goal of transition is to maximize lifelong functioning through the provision of high-quality, developmentally appropriate healthcare services that continue uninterrupted as the individual moves from adolescence to adulthood.
In pediatric clinics, care is provided to patients accompanied by their tutors; therefore, the sense of preparation for independence varies between one part and the other. To our knowledge, there are no reports that identified differences in self-care skills be- tween patients and caregivers, and no information on variables that could influence on that perception has been To compare the perception of self-care skills for transition between adoles- cents and their caregivers and analyze clinical, familiar and socio- economic factors that could influence on that perception. Methods:Between January and April 2018 we included patients with rheumatic diseases that were diagnosed during childhood (under 16 years old) and at the time of their participation were between 12 and 22 years old. We excluded patients with more than one condition, neurological disabilities, or refuse to partici- pate (patient or tutor). Patients were recruited from Outpatient Clinics from University Hospital“Dr. Jose E. González” at Monter- rey, Mexico.
We collected clinical (age, gender, disease onset, activity status, med- ications, complications, and adverse events), familial (family compos- ition), and socioeconomic (household characteristics, available services) variables. Self-care abilities and perceptions were evaluated with the Transition Readiness Assessment for Youth Questionnaire Spanish Version 2.0 (2014, 25729) and Transition Readiness Assess- ment for Parents/Caregivers Questionnaire Spanish Version 2.0 (2014, 25729). Variables were described with frequencies, means, medians, and were analyzed with Chi Square, Mann-Whitney, t test, and correl- ation tests as convenience.
Results: Perception in 31 patients and their parents were evaluated. Most of them were female (70%), median age 17 (12 - 21) years, and ju- venile idiopathic arthritis (JIA) as the most prevalent disease (48%). A high part of our patients was classified as low and median low income families and a few proportion of the parents have superior education. Among transitions questionaires,“Need to change to adult centered care”was answered with a median of 9 (5 - 10) by caregivers, that was similar to answer by patient (9, 1–10, P = 0.42). On“Perception of capability of adult-centered health care”, the answers were also similar (9 vs 8). Despite this, other specific areas of“disease know- ledge” and “use of health-care services knowledge” were overesti- mated by caregivers when compared with patients.
No differences were seen when results by disease were analyzed. Conclusion:Both patients and tutors are aware of the importance of a adequate transition preparation, also both have the same percep- tion of preparedness of the patient. Both sides think they aren’t pre- pared enough for self care in emergency situations and the use of medications by themselves. Based on the results of this question- naire we should focus our efforts in educating patients on how to react on an emergency situations as well as the self administration of the medications they use on their daily life.
Disclosure of Interest None Declared
P367
UNDERSTANDING BARRIERS AND DRIVERS THROUGH HEALTHCARE FOCUS GROUPS TO GUIDE THE DEVELOPMENT OF
MUSCULOSKELETAL MODELS OF CARE FOR CHILDREN/ ADOLESCENT IN A MIDDLE-INCOME COUNTRY
Heide Kunzmann1, Tony Woolf2, Josephine Erwin3, Helen Foster4, Christiaan Scott1
1Paediatric Rheumatology, University of Cape Town, Cape Town, South Africa;2Bone and Joint Research Group;3Bone & Joint Research Office, Royal Cornwall Hospital, Truro;4Paediatric Rheumatology, Newcastle University, Newcastle, UK
Correspondence:Heide Kunzmann
Pediatric Rheumatology2018,16(Suppl 2):P367 Table 1 (abstract P365).See text for description.
Phase Facility Physician Attendee Centered Age Goal
1 PedRh Ped Rheum Patient and
Caregiver
Caregiver 12 to 15
Co, Explain the program 2 TC Ped and Adult Rheum Patient and Caregiver Patient 16 to 18 Sk, Co, MA, Wo, Psy 3 TC Ped and Adult Rheum Patient Patient 16 to 18 Sk, Co, MA, Wo, Psy 4 TC Ped and Adult Rheum Patient Patient 16 to 18 Sk, Co, MA, Wo, Psy
5 TC Adult Rheum Patient Patient 16
to 18 Sk, Co, MA, Wo, Psy 6 Adult Clinic
Adult Rheum Patient Patient 18
to 22 Sk, Co, MA, Wo, Psy 7 Adult Clinic
Adult Rheum Patient Patient 18
to 22 Post-transition f/u 8 Adult Clinic
Adult Rheum Patient Patient 18
to 22
Post-transition f/u
Introduction:Diseases of poverty remain the dominating health pri- ority in South Africa and other Low- and Middle Income Countries (LMIC). Recent efforts towards strategic planning on the prevention and control of non-communicable diseases (NCDs) reflect the grow- ing relevance of NCD’s in LMIC’s where infectious diseases burden is on the decline.
Objectives:We set out to identify barriers and drivers that influence access for children and adolescents presenting with musculoskeletal (MSK) symptoms with the aim to use this information to improve MSK care outcomes trough the development of models of care and deliver appropriate and applicable service improvement strategies. In doing so we hope to develop a model that can be replicated in other NCD’s and in other LMIC healthcare systems.
Methods:Five focus group interviews were done over a period of two weeks. The focus group participants consisted of Community Service Medical Officers (COSMO’s), Medical Officers (MO’s), Family Physician Consultants and Registered Nurses in the Eden and Central Karoo districts within the Western Cape Province of South Africa. There were forty-one participants. 25 of the 41 participants completed the questionnaire exploring their training with regard to the MSK system and their own perceived confidence in identifying and treating children with a MSK presentation.
Results:Twenty of the 25 participants were general practitioners, two where specialist family physicians (consultants) and 3 participants did not specify. The average level of experience was 8.8 years. Eight-eight percent (n=22) had undergraduate training in the examination of the paediatric MSK. 8% (n=2) had training in the paediatric gait, arms, legs and spine (pGALS), but did not use it in day-to-day practice. Teaching of the paediatric MSK system in children was predominantly delivered by paediatricians and paediatric orthopedic surgeons. 84% of the par- ticipants felt confident in some, but not all aspects of the MSK examin- ation. Using short case studies the participants had to rate their confidence on a scale of 0-10. The confidence score for the MSK cases had a mean of 4.16-5.52 (SD 1.93-2.63), compared to communicable disease case that had a mean of 7.2 (SD 1.68).
Good relationship fostered by the secondary hospital paediatricians was identified as the biggest driver. Other drivers were, electronic plat- form for note keeping, communication via certain social media applica- tions and gained knowledge of system and disease by an intern first working in a secondary hospital prior working in a peripheral hos- pital. Barriers were the healthcare providers own perceived limitation and exposure/knowledge to MSK diseases, poor history given by the person accompanying the patient, limitations in after hour investiga- tions, unpredictable availability of ambulance services and socioeco- nomic factors of the patient population.
Conclusion:The focus groups identified barriers and drivers that play a role in whether children and adolescents presenting with MSK symptoms receive the“right care, delivered at theright time, by the right team, in theright place, with theright resources”these insights will direct further investigation into the drivers and barriers in the other districts of South Africa and other LMICs. The results could give direction in developing policies and Models of Care to improve MSK care outcomes for children and adolescents.
Disclosure of Interest None Declared
P368
A MULTIDISCIPLINARY APPROACH OF CHRONIC OSTEOARTICULAR PAIN IN CHILDREN AND ADOLESCENTS: THE LAUSANNE EXPERIENCE Mejbri Manel1, Caroline Schnider1, Nicolas Lutz2, Anne-Emmanuelle Ambresin3, Alain Deppen4, Sandrine Vaucher5, Hofer Michael1 1Unité Romande d’Immuno-Rhumatologie pédiatrique DFME; 2Unité pédiatrique de Chirurgie Orthopédique et Traumatique DFME; 3
Division Interdisciplinaire Santé des Adolescents DFME; 4
Service Universitaire de Psychiatrie de;5Service de physiothérapie, CENTRE HOSPITALIER UNIVERSITAIRE VAUDOIS , Lausanne, Switzerland
Correspondence:Mejbri Manel
Pediatric Rheumatology2018,16(Suppl 2):P368
Introduction: Chronic pain disorder is a common and under- recognized problem who is increasing in the pediatric population.Os- teoarticular pain is one of the most common symptoms.This is a signifi- cant problem leading to a decrease in quality of life,school absenteeism and social withdrawal.A multidisciplinary approach is essential to evalu- ate and manage those patients whom have an unsatisfactory evolution despite primary medical care.Starting In 2014,a group of 4 medical spe- cialists(pediatric rheumatologist, pediatric orthopedist, child psychiatrist and pediatrician specialist in adolescent)and one physiotherapist started a joint outpatient clinic assessing such children.
Objectives:The aim of this study was to describe and outline some characteristics of all patients seen at this platform up to now.