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A predictive model of scoliosis: the research will be published in 2022

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During these months, Isico carried out the study funded by the SRS (Research Society on Scoliosis), aimed at identifying a predictive model on the evolution of scoliotic curves in untreated patients, in collaboration with the University of Alberta, in Canada. Collected the data, presented preliminarily in March by Prof. Stefano Negrini, scientific director of Isico, in a webinar during the Research Grant Outcome Symposium organized by SRS, we moved to the writing phase of the study that will be published in 2022.
The radiographic measurements collected (we recall that the research included 431 patients with a diagnosis of JIS, below age 26, previously untreated) were used to create a model that allows predicting the curve’s progression.
“Let’s take an example – explains Dr Sabrina Donzelli, a physiatrist who is following the research – with an 8-year-old patient and a 20-degree curve, the equation derived from the sample allows us to calculate how much it will evolve in the first year from diagnosis. Another equation instead will predict the curve at the end of growth. To refine the prediction, the sample was then divided into different risk categories to estimate the potential progression in groups of patients different for age and risk of progressivity, based on the Risser. The models developed were then validated through artificial intelligence “.
In the article that will be published, the researchers will provide the equation that allows calculating the evolutionary potential of scoliosis.

ISICO evidence-based treatment decided in agreement with patient and family: the best solution

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How effective is a personalised scoliosis treatment, which means a treatment supported by clinical experience combined with available scientific evidence on risk factors; based on the specific therapeutic objective; and adapted to the patient’s particular needs to encourage compliance? In other words, how effective is the treatment approach adopted by Isico compared with a simplified protocol based on a single, standardised type of brace and a set number of brace-wearing hours? 

According to our study A Pragmatic Benchmarking Study of an Evidence-Based Personalised Approach in 1938 Adolescents with High-Risk Idiopathic Scoliosis, just published in the Journal of Clinical Medicine (link), the answer is hugely effective! 

Our study, featuring a retrospective observation of a prospective database, includes nearly 2000 patients from our centre, recruited between 2004 and 2017, and is therefore the largest on conservative treatment of scoliosis in the current literature. 

The evidence-based personalised approach (EBPA) for idiopathic scoliosis in adolescents (AIS), routinely adopted in clinical practice by Isico, was compared with data from existing randomised controlled trials (RCTs), as paradigms of single treatments, to verify EBPA efficacy and burdensomeness in high-risk AIS.

“We compared the results recorded by Isico, in terms of the probability of avoiding surgery, with those of two randomised studies: one conducted using SpineCor® the other based on the use of a rigid brace”, explains Prof. Stefano Negrini, scientific director of Isico and first author of the study.
“We found that an evidence-based and personalised approach like ours yielded far better results than standardised treatments where strict protocols are followed. This is because it combines evidence with physician expertise and consideration of the patient’s preferences. At Isico, every patient follows a unique and personalised treatment pathway, both in terms of the brace chosen — other centres instead tend to offer only the one they are most familiar with —, but also in terms of the dosing of the treatment (brace-wearing time): in short, we offer an “à la carte” approach that allows us to find exactly the right balance, for the patient, between a series of factors and considerations: the degree of invasiveness, the risk of progression, and the mutually agreed goals of the treatment. In this way, in line with the great importance nowadays attached to patient-centred care, it might be decided that the treatment should be only as burdensome as is strictly necessary, or as burdensome as the patient is willing to accept. Throughout, the patient is involved in the therapeutic decision-making process and also made to feel he/she is actively contributing to the pursuit of the final goal of treatment. All this is achieved in a stepwise manner, in such a way as to ensure we provide the most effective treatment with the lowest impact.”

To ensure informed and shared decisions, the treating physician systematically informed the participants about their clinical and aesthetic condition, their progression risk, and the significance of Cobb angle thresholds (30° and 50°) and how these could influence their health and possible results. We discussed alternatives: to either reduce the burdensomeness of the treatment or increase the probability of success.

In short, greater patient involvement was found to lead to greater compliance and better results, which is exactly what was shown by another study published by our group several years ago entitled Adolescent Idiopathic Bracing Success Rates Influenced by Time in Brace: Comparative Effectiveness Analysis of the BrAIST and ISICO Cohorts. 

“Back then, in that study, which compared our findings with those of the “BrAIST” randomised multicentre study by Lori Dolan and Stuart Weinstein, we were already showing that Isico treatment works better”, Prof. Negrini goes on. “Indeed, it reduced the rate of recourse to surgery to a third of that recorded in the American study: this is because Isico patients, adhering to the prescribed treatment, wear their brace for a far greater number of hours. And now, this latest, pragmatic, observational study of a large prospective cohort benchmarked to published RCTs has shown higher efficacy of EBPA compared with standardised protocols, to the point that only 2 % of our patients had surgery, compared with 28% of those in groups receiving standardised treatment. In addition to being initiated early on and prolonged over time, the treatment delivered by Isico is also carefully personalised based on the severity of the current condition and its risk of progressing. Accordingly, the treatment offered ranges from simple exercises to bracing, with the number of brace-wearing hours per day varying according to need. It is thus a stepwise approach that progresses from observation, through exercises, SpineCor®, rigid and super rigid bracing (at Isico, instead of plaster casts, we use the equally effective Sforzesco brace), and finally to surgery as a last resort. What explains the success of this treatment? Well, the team of experts of course, but above all the trust and cooperation we receive from our young patients and their families”.

Isico among the attendees of the November SRS webinar

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A new webinar for professionals is scheduled for November 7, part of the cycle of those organized in recent months by the SRS (available on the pages of the society’s website).

Two specialists from Isico, our scientific director, Prof. Stefano Negrini and Dr. Fabio Zaina, Isico physiatrist will be taking part in this online event titled Current Status of Bracing in Adults and Adolescents:An SRS-SOSORT Collaboration.

Join the SRS Non-Operative Committee and the Society on Scoliosis Orthopaedic and Rehabilitation Treatment (SOSORT) for a webinar analyzing the current evidence and practice guidelines for bracing for adolescent and adult patients with spinal deformity.

This webinar will provide a systematic analysis of the current evidence and best practice guidelines for bracing management of patients with spinal deformity in both adolescents and adults. With variations in brace design and documentation of long-term benefits, use the consensus discussed to clarify your current practice and brace selections.
There will be an update on the current training of Orthotists, including specialization, fabrication, fitting and deformity correction.

To register please visit the page of the SRS website

Digital Transformation at ISPO: Isico is there

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The theme of the international online conference of the International Society for Prosthetics and Orthotics (ISPO), scheduled from 1 to 4 November will be “Digital Transformation in an Evolving World”: the World Congress will explore how digital transformation affects all aspects of using and working with assistive technology, from booking a clinic appointment and electronic health records to computer-aided design, microprocessor-controlled prostheses or orthoses, or video conferencing and social media.

 During the event, Prof.Stefano Negrini, Scientific Director of Isico, will present one poster, Modular Effective as Custom-Made. A Matched Case-Control Study of Modular Italian MI-brace vs Very-Rigid Sforzesco Brace in AIS” and two oral presentations “Introducing Pelvis Semi-Rigid Material does not change Short-Term Very-Rigid Sforzesco Brace Results. A Matched Case-Control Study in AIS” and “Reducing the Pelvis Constriction Changes the Sagittal Plane. A Retrospective Case-Control Study of Free Pelvis vs Classical Very-Rigid Sforzesco Braces”. 

Furthermore, Prof. Negrini will also hold a workshop on November 2nd on Innovations in the Design of Hard Rigid Braces for Adolescent Idiopathic Scoliosis Treatment in collaboration with Guerrino Rosellini and Fabrizio Tessadri of the orthotist’s shops ITOP and Orthotecnica.

Can bracing improve trunk asymmetries in young adults?

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Scoliosis is a condition characterised by the presence of a vertebral deformity in the three planes of space. The extent to which this deformity is visible externally varies from case to case. As stated in the guidelines recently developed by SOSORT, one of the primary objectives of scoliosis rehabilitation treatment is to improve trunk asymmetries. Achieving this objective has important implications for quality of life — after all, having a positive self-image helps to ensure a good level of psychological wellbeing and this, in turn, translates into a better quality of life.

Not uncommonly, adolescents with scoliosis lack the willpower or motivation to undertake bracing treatment, or perhaps have never had a medical specialist recommend it to them; others, quite simply, may not even have realised that they had scoliosis.
Basically, many different factors can affect what scoliosis treatment a person received, or did not receive, in adolescence. But the fact is that some people reach adulthood before realising, for example, that they have one waist straighter than the other, that part of their rib cage protrudes, or that one breast is higher than the other.

What can be done to improve these asymmetries?

“Although there is no scientific evidence available to help us answer this question with precision, we at ISICO have performed some bracing treatments in young adults (up to 25 years of age) – explains dr Fabio Zaina, physiatrist – In such cases, our doctors, during the consultation, are clear from the outset: this is a long and demanding course of treatment. For the first few months, the brace should be worn full time, i.e., for 23 hours a day, after which the brace-wearing time is reduced very gradually in an effort to maintain the results obtained”.

Patients wanting to start bracing must be absolutely convinced about it and highly motivated, too, because any sudden interruption of the treatment, without respecting the abovementioned weaning-off phase, can negatively affect the stability of the spine.

On the subject of stability, we should also point out that bracing treatment must always be combined with specific exercises based on self-correction. The purpose of these exercises is to keep the back muscles strong and teach the patient how to keep their trunk correctly positioned during the various activities of daily life.

Can adults obtain a radiographic improvement?

Unfortunately, radiographic improvements cannot be achieved in adulthood. In individuals who have reached full skeletal maturity, bracing is never proposed with this aim in mind.

In other words, bracing in adults can improve the external asymmetries related to the scoliotic curves, but it cannot reduce the Cobb degrees of the curves themselves.

Are there no other options available for adults who are reluctant to wear a brace?  

“Adults can always follow a specific physiotherapy programme based on self-correction exercises – explains Valentina Premoli, physiotherapist- These exercises are a way to act on the postural component of scoliosis. They serve to counteract the spine’s tendency to collapse to one side, and can thus improve the functioning of the back generally. This type of treatment helps to limit the worsening of the asymmetries that accompanies the spine’s tendency to give way in the direction of the curves — a tendency that becomes increasingly marked as we get older”.

My brace has helped me to grow up!

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I’m Ilaria, and I have spent the past 6 years wearing a scoliosis brace.

At last, on 28/6/2021, after countless sacrifices, many, many moments when it felt like everything was against me, and others when things seemed to be going better, I finally came to the end of my “journey” with ISICO.

In spite of the difficulties I had along the way, as time went by my check-ups became increasingly encouraging, my back stabilised, and I was able to leave my brace off more and more; also, thanks to the exercises, the cosmetic appearance of my trunk improved.

There have obviously been lots of ups and downs over these years, but these have helped me to grow up: I now know that the low points teach you the importance of persevering, of keeping your head held high and always looking for the positive side of things.

Through wearing a brace, I have come to realise that I was a rather superficial person before. However, over time I have matured, and in fact, I learned to really appreciate the true value of situations and times spent both in and out of my brace.

My brace also helped me to appreciate what people really thought of me, and how much they cared about me.

When I first started wearing a brace, in the 4th year of primary school, my classmates and teachers didn’t know at all what it was for or understand why I needed to wear it. For them, there was no point to it, whereas I realised that it represented my “salvation”.
Luckily, over time and in my next school I came across people (classmates and teachers) who knew more about it and were always very supportive.

One very important factor in getting me to the point I’ve reached today was the “brace camp” holiday, organised by ISICO, that I had on the island of Asinara in Italy in 2018. There, I made some lasting friendships and learned that wearing a brace on holiday was no big deal, even if I could only leave it off for a few hours a day.

During that holiday, the physiotherapists taught us that doing postural exercises for our backs could actually be fun. They encouraged us and helped us to “put up” with keeping our braces on for the prescribed number of hours. What’s more, even though we weren’t able to spend very much time with our braces off, we were still able to enjoy the sea and the natural surroundings. They even taught us how to go in the water in a brace.

In the course of this whole experience, I have met many different people, with different stories, and this has helped me to see that while everyone at ISICO is on the same journey, each person experiences and approaches it in their own way.

I want to thank Dr Monia Lusini, who has always been a great support, whatever the circumstances, but my most heartfelt thanks go to my parents, who have always been there for me through thick and thin, supporting me and encouraging me not to give up and always to be proud of myself and persevere.

My parents are amazing, always ready to do anything for me and give me whatever I need.

Finally, I hope the things I have said might be of help to lots of other young brace wearers out there!

My message to them is: stay strong and stay brave because in the end all your sacrifices and hard work will pay off. Before you know it, you will be seeing the light at the end of the tunnel!

And don’t forget! Go in the sea as often as you like… just slip on your brace undershirt, brace and swimming costume and go for it! After all, there’s nothing quite like a refreshing dip ❤️

Bracing + exercises + adherence to treatment = a recipe for successful treatment!

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Idiopathic scoliosis is a disease that causes abnormal growth of the spine. Once a spinal curve has appeared, the vertebrae of a young patient are liable to become deformed in the three planes of space. This risk persists until he or she has finished growing.
Through conservative treatment, we aim to ensure that our patients, as adults, will have a strong back. In other words, we want them to reach adulthood with a healthy and functional spine, and that does not necessarily mean a perfectly straight one!

Therapy is therefore undertaken in order to try and limit the natural worsening of scoliosis curves through treatments proportionate to the severity of the condition.

To this end, there exist two main methods: specific physical exercises and bracing, and both need to be applied correctly and with the necessary adherence to treatment.

To decide whether a young patient needs to be prescribed a brace, the treating physician considers a series of factors, for example the size of the curve, the patient’s bone age, and whether or not he/she presents asymmetries (of hips, pelvis, scapulae, shoulders and so on).

When bracing is deemed warranted, we urge our youngsters to adhere scrupulously to the instructions given in order not to compromise the effectiveness of the treatment, and indeed to obtain the best possible correction.
This means that they must fasten and tighten their brace correctly, as shown by our doctors during the testing phase. If they do this, their brace will be less visible under their clothing; it will also be less prone to move about when they are walking, running and even sitting, and therefore more comfortable.

In addition to being more visible under clothes, a brace that is worn too loosely is less effective: it will not give the results that would have been achieved by wearing it properly.

According to data we have gathered, bracing treatment should produce its most marked results in the first months, and adhering to the prescribed number of brace-on hours is what makes the difference in this regard.

Bracing treatment is always prescribed together with specific physical exercises, i.e., 15-20 minutes per day of spinal self-correction and stabilisation exercises that help patients get into the habit of regularly correcting their posture themselves, even during the hours they are permitted to leave their brace off. 

We constantly remind our patients that whenever they remove their brace, self-correction becomes all important, and that “voluntary and active” self-correction works just like the brace itself does. Clearly, though, this demands good self-awareness on their part and a willingness to collaborate.

In “Specific exercises performed in the period of brace weaning can avoid loss of correction in Adolescent Idiopathic Scoliosis (AIS) patients: Winner of SOSORT’s 2008 Award for Best Clinical Paper”, we  showed that patients who regularly did specific exercises obtained a stable result when they finally stopped wearing their brace. Instead, those who did specific exercises discontinuously showed a worsening of a few degrees, while the curves of those who did no exercises at all worsened by an average of 10 Cobb degrees or more.

And it is important to remember that all these patients were prescribed the same type of brace, and the same number of bracing hours.

Brace weaning, which is carefully monitored by the physician, must be done extremely gradually, as the spine needs time to adapt to the absence of an external support. This is particularly true in the case of patients treated for very severe curves. During this delicate phase, self-correction exercises become even more important, helping to prevent the spine from once again collapsing in the direction of the curve. 

We often say that strength comes from within: a patient’s own determination to wear his/her brace consistently and do his/her exercises correctly will together help to ensure that conservative treatment is a success – and it is important to understand correction of the scoliotic curve is not the only measure of success. Success also means stabilising the curve and curbing its tendency to worsen as the patient grows.

Andrea’s story

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Hi, I’m Andrea. It’s now been nearly two years, and I finally feel ready, and brave enough, to speak out.
Over time, I have come to realise that people are often judged for the way they look and not for who they really are. So, I may not have a six-pack with super-toned abs, and I haven’t got a straight back like other teenagers, but to be honest, none of that worries me anymore.
It is the people who can see your worth without bothering about your appearance who really love you for yourself. I am now half-way through a journey that seemed endless to begin with. I spent an entire year wearing this thing for 23 hours a day.
I had to cope with a whole summer when I couldn’t spend more than an hour a day by the sea, and holidays when I couldn’t do what everyone else was doing, and I was always finding excuses not to go out simply because I was too ashamed to admit that I had, and have, this “problem”.
Now, though, I am perfectly happy with who and what I am, and I know that the people who really care about me will continue to be there for me come what may.
I’d like to dedicate these few lines to myself, to acknowledge the fact that, after the initial tears and the anger at not being able to have a “normal” adolescence, I have finally grown self-confident enough not to feel ashamed.
This is not one of life’s real problems, it’s just an obstacle I need to overcome in order to become a better person. I am proud of who I am today. 

ISYQOL: Polish adaptation study published

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The study Polish Adaptation of the Italian Spine Youth Quality of Life Questionnaire has just been published (Edyta Kinel, Krzysztof Korbel, Piotr Janusz, Mateusz Kozinoga, Dariusz Czaprowski, Thomas Kotwicki), developed by the University of Medical Science of Poznan and from Olsztyn University, Bydgoska for the adaptation of our Italian Spine Youth Quality of Life Questionnaire (ISYQOL) into Polish (ISYQOL-PL).

Recall that ISYQOL is the questionnaire developed by Isico that measures the health-related quality of life of adolescents with spinal deformities and has proved particularly appropriate in patients with adolescent idiopathic scoliosis (AIS) not treated surgically.
The questionnaire is available for free online on a dedicated website, where you can also find the English and Polish versions of the questionnaire:   https://www.isyqol.org

The study aimed to carry on the process of the cultural adaptation of the Italian Spine Youth Quality of Life Questionnaire (ISYQOL) into Polish (ISYQOL-PL). The prior hypothesis was: the ISYQOL-PL questionnaire is reliable and appropriate for adolescents with a spinal deformity. Fifty-six adolescents (mean age 13.8 ± 1.9) were enrolled.
The ISYQOL questionnaire is based on patients’ concerns and has been shown to be particularly appropriate in AIS and SJK patients undergoing non-surgical management. The ISYQOL is a 20 items questionnaire. The process of the cross-cultural adaptation of the ISYQOL-PL was performed following the guidelines set up by the International Quality of Life Assessment (IQOLA). The implementation of this method includes the following steps: forward translation, back-translation and expert panel, pre-testing and cognitive interviewing, development of the final version. The total sample size was decided based on previous recommendations for validation studies.

What about study’s conclusions? “The ISYQOL-PL is a brief and practical tool for quantifying HRQoL in adolescents with a spine deformity – comments the coordinator of the study, the spine surgeon Dr. Tomasz Kotwicki from the Department of Spine Disorders and Pediatric Orthopedics –  Filling in the questionnaire takes less than 10 minutes to be completed. The ISYQOL-PL questionnaire is reliable and can be used in adolescents with spinal deformities”. 

Full text available here:  https://pubmed.ncbi.nlm.nih.gov/34066225/

Simona’s story

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Hi, I’m Simona, and, like many of you, I wear a back brace. My “brace-wearing” journey began some years ago. To be precise, it was 26 October 2017 when I got my first Lyon brace. How could I forget it?!

I had discovered my scoliosis in May that year, after suddenly realising, during a PE lesson one day, that there was something wrong with me. During a run, I felt a very sharp pain in my shoulders, so I stopped and asked my PE teacher what might be the reason.

 She asked me to bend forwards, and after checking me over and getting me to do some movements, she said I had one shoulder higher than the other.

After talking over the problem at length with my parents, we went to a hospital to see an orthopaedic specialist. Needless to say, it was a disaster, partly due to the doctor’s lack of empathy: according to him, I needed to wear a Milwaukee brace for 18 hours a day!

The first time I saw an X-ray of my back, I was shocked, as I hadn’t seen anything like it before. I felt like a freak, also because up until that point, I had never even heard of scoliosis. I had no idea what it was. After realising that this doctor would not be at all interested in helping me cope with the considerable psychological impact of having to wear a brace (and I could already see that this was going to be considerable), my parents and I decided it would be better to consult another doctor.

That is what we did, and we couldn’t have found a better one! He turned out to be the best doctor ever: from our very first meeting, he always wanted to hear my opinion, even though I was still only young.

Thanks to him, I was able to embark on this bracing adventure with much more peace of mind. He prescribed me a Lyon brace with a removable neck support (8 hours of wear per day) to treat my cervical spine too and a right shoe-lift. Since then, I have had two new braces and two new shoe-lifts, and the treatment has reduced my degrees of curvature considerably. 

I can’t deny that having to wear a brace still had a strong psychological impact on me, but with the help of my family, my physiotherapist and my doctor, I managed to cope. And even though it’s not over yet, I know that the worst part is now behind me.

 I am very proud of all that I have achieved. My message to anyone else who wears a brace, or needs to start wearing one, is this: wear it as much as you can, and always for all the hours your doctor tells you to! The reason I have improved so much is that I have always worn mine even more than I had to. You’ll probably be really amazed to learn this, but I have actually decided that I want to train to be an orthopaedic specialist one day! 

Yesterday, I told my doctor this, and he was surprised. But it’s true! He has always been so kind and understanding with me. Thanks to him, I have even grown quite fond of my “condition”!  So, make sure you find a good doctor, and above all, one who treats you not as a laboratory animal but as a person who needs more than just physical attention. One day I want to be able to help other people get through what I have been through, and I’m still going through. If I succeed, I’ll be really proud of myself! 

I know this is rather a long message, but I have been a reader of this blog for so long now. The doctors who write it have often given me the answers I needed, and since it has often helped lift my spirits in blacker moments, I decided I should now share my story in the hope of encouraging others too!