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News from the Health Professionals ComPaS - Community of Practice and Science - April 2021

Introduction

A short introduction on this community might be useful, because since 2020 new activities started. First, what is meant by Health Professional? Aren’t we all Health Professionals? Within PReS, Health Professionals (HP) describes all health professions besides medical doctors. This HP community consists of nurses and nurse practitioners, physical therapists, occupational therapists, sport scientists, psychologists, podiatrists or social workers. We are all professionals in rheumatic diseases and also professionals in working with children and their families. The P in PReS stands for Paediatric: taking into account the nature of children: development and growth, professional in communication and building a relation with a child. This needs time and flexibility: children often in pain and anxious deserve professionals who take time to tune in to them.

PReS emphasises the need of a multi-disciplinary approach: besides medication and good medical treatment, the care from other health professionals is an important part of the health care around our patients. “It takes a village to raise a child”, a mother of a young patient after a period of treatment told to my team. She expressed her appreciation towards all the different members as a team, among all the supportive people in their own daily life.

When growing-up, a child is surrounded usually in his village by protective, caring parents. And there are grandparents, stepping in for help and they can be of great influence. Growing up, competing, and playing with his brothers or sisters, who also have to deal with this disease in their family. School is very important in the lives of children. Classmates, teachers and even concierges can make their daily life easier or give them a hard time. All those people: they interact with the child on his or her way of growing up as an adult, living the life he or she is given. Learning, experiencing, choosing and rejecting, working, relaxing, enjoying or stressing, playing and growing towards independency.

For 1 in 5 children with a chronic disease, in this village also raise hospitals, care institutes and enter health care professionals who are examining them, giving medications, listening to their fears and complaints or asking them questions or answering their questions, advising them what to do and what not to do and supporting them in their illness and pain, limitations and discomfort. We all play a role in this village, standing around this child and his family. And they play a role in our village: challenging us to do our utmost best to improve the health and wellbeing of them, children with rheumatic diseases.

PReS aims to develop towards 2025 a dedicated Community of Practice and Science where HP exchange knowledge and skills and find resources in order to achieve the highest standards of care for all HP- disciplines, in line with the mission of PReS 2025: “Advance the care and improve the health and well-being of children and young people with rheumatic conditions”.

PReS calls for dedicated Health Professionals, willing to contribute to a European and global platform to learn and to improve the care leading to better outcomes for the children and their families.

HP PReS ComPaS Meetings on Theme group meetings

Since 2020 PReS organize ZOOM meetings for the HP Community of Practice and Science. These meetings are called: ComPaS Meetings, indicating that they are meant to discuss the direction for the re-launched HP community. We strive to invite 2 speakers to inspire and give input to the discussion

The next ComPaS meeting is Tuesday 20^th April 19:30 - 20:45 (CET)

AGENDA

19:30 – 20:00

Integrated Cognitive-Behavioral Therapy and Neuromuscular Training for Juvenile Fibromyalgia: The FIT Teens Program, Professor Susmita Kashikar-Zuck,
Professor of Pediatrics and Clinical Anesthesiology
Endowed Research Director, Behavioral Medicine and Clinical Psychology
Associate Director, Center for Understanding Pediatric Pain (CUPP)

Chair, Pain Committee, Childhood Arthritis and Rheumatology Research Alliance (CARRA), Cincinnati Children’s Hospital Medical Center

20:00 – 20:30

Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map

Karine Toupin- April
Children's Hospital of Eastern Ontario Research Institute
Department of Pediatrics, Faculty of Medicine, University of Ottawa
School of Rehabilitation Sciences, Faculty of Health Sciences, University of Ottawa

20:00 – 20:45

Break out rooms to meet, greet and discussion

Theme group meetings

Thursday 20^th May 15:30 – 17:00 (CET) will be the third ZOOM meeting for HP colleagues who actively want to connect in 2 theme groups "Pain and Fatigue management" or "Physical activity and fitness”.

In these theme groups projects are started to develop 2 recommendations on Physical Activity and fitness in JIA and on the HP approach to pain management in JIA. 

You can only be invited for the ZOOM meetings if you completed the CV survey on the PReS website, section Health Professionals /health-professionals/health-professionals.html or if you are a PReS Health Professional member. Check your membership status with the PReS Secretariat (MCI). I encourage you to become a PReS HP member!

E-congress HP Program

The HP/ENCA sessions integrated in the PReS e-congress are promising.

Topics will be: Auto-inflammatory diseases and the implications for HP management, Coping with additional issues beside the disease, Barriers of Physical activity, Measurements for Physical fitness in clinical practice and a session on Hypermobility Spectrum Disorder. Make sure to block your agenda Sunday 19th – Monday 20^th and Tuesday 21^st September. Although no face-to-face meeting, we will have several life virtual network events, like live Questions and Answers and informal fun events.

If you have any questions or comments please email Jeannette.cappon@tiscali.nl

Best regards,

Jeannette Cappon,
HP Chair PReS Council
Ped PT-Msc Reade, Amsterdam Netherlands