A judo champion in brace

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My name is Giulia. I live in Genoa, and I am in my third year of Middle School. I am just like many other girls: I have my friends, I love the sea in summer, and I have my hobbies and interests, the main one being judo. 

In January 2020, I was diagnosed with idiopathic scoliosis. My parents requested several consultations before we ended up at ISICO.

It was a challenging and upsetting process for me and my parents, who struggled to know the best course of action to take.

To begin with, my treatment was just daily exercises: every month, I had a session with my physiotherapist, Martina, and every four months, a medical check-up with Dr Fabio Zaina, a physiatrist at ISICO.

It was quite a tough period because I had to do my exercises every day, regardless of homework, daily judo training, and holidays. When each check-up came around, I would get really anxious about what my curve would measure.

In April this year, it was found to have gotten worse, and Dr Zaina prescribed a brace. At first, I didn’t take it very well, as I started thinking about everything this would stop me from doing. I was thinking about my sport, my summer, going to the sea, and so on. My family were alarmed, too, but we soon calmed down thanks to Martina’s support.

It only seems like yesterday when Mum and I went to the orthopaedic office to collect my brace. I remember the tests and adjustments needed to make it feel as comfortable as possible. During the first “test run”, I really felt I couldn’t breathe and struggled to do even the most basic movements. Then, gradually, something seemed to change. Together with Mum, I started doing increasingly complex movements, like sitting down and getting up from benches in the play park close to where we live, walking faster and faster until I was doing short runs. By the end of that morning, it felt like my brace and I were getting to know each other: I was starting to adapt. The first night I managed to sleep quite well, and my new life began the following day. Luckily, my prescription was for 18 hours per day, so I could plan my days, concentrating all my sporting activities during my brace-off hours. 

In those early months, I started to measure this new situation, trying to set myself goals and then working to achieve them. I wanted to know how many things I could still do from my previous life with a brace on. 

So, I made a list and started to tick them off: walk to school with a backpack on; ride a bicycle; do a handstand (this one was pretty difficult); do a head-over-heels (I managed this after lots of tries). When the summer came, and I swapped sweatshirts for lighter clothes, I found myself having to try out new solutions and change my look a bit, opting for slightly looser T-shirts, but the brace wasn’t that obvious under them. And then, it was the school holidays.

Since I spend most of my summer on the beach, I had to rethink my brace-wearing schedule to fit some sun and sea into my brace-off hours and my training, which gets more intensive in the summer. To stick to the six hours allowed, I worked out a method that actually worked well: I decided that my brace-off hours would end exactly when my training sessions did and calculated them on that basis, counting back six hours to know exactly when they should start. At the allotted time, I would take off my brace and put on a costume to enjoy the sun and the waves. On the hottest days, though, even that solution seemed impossible, and after talking to Martina, I started removing the sensor from my brace so that I could also go in the sea with it on. Gradually, everything fell into place, and my everyday life became “easy” again, basically because I could still do pretty much everything I used to do. 

After a year’s break due to the pandemic, judo competitions started again. July brought the Italian Championships, my first ever. After taking part in, and winning, the regional qualifications, I went to Ostia for the national championships. I got through three matches and then won the final, which I was amazed about because I really hadn’t expected to. I automatically qualified for the next Italian Championships in November, thanks to that result.

The summer raced by, as there was so much going on – beach time, training, family holidays. Everything was just like normal!

In September, after returning to school, I started training for the new Italian Championships in November. I was to compete in the beginners’ B -40KG category: I was determined to defend the title I had won in the summer. So, I worked out a new daily plan, including school, gym sessions and free time, and threw myself headlong into this new challenge. 

On 14 November, I went back to Ostia, in some ways more excited than the first time but also more aware of the challenge I faced. Once again, I had four matches, and I retained my title as Italian champion in my category! I was even more thrilled than the first time because more athletes were competing on this occasion and, technically, the standard was higher. That was the day I realised that if you really want something and fight for it, nothing can stop you, even a problem like ours. We are just the same as everyone else!

When I first learned that I had to start wearing a brace, I read some of the stories of others like me fighting scoliosis. They said that your brace, in the end, becomes a kind of travelling companion, a friend who is always there for you throughout the day.  I didn’t really believe that, and I thought they were just words meant to encourage others like me.

But, you know, it really is true, and even though I would have preferred not to have to go through all this, it hasn’t stopped me from reaching the highest step on the podium and being happy!

Returning to physical activity after surgery for adolescent idiopathic scoliosis

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Sport and physical activity are essential for psychosocial and physical well-being in children and adolescents, and youngsters with scoliosis are not subject to any limitations in this regard: they can do sports and other physical activities just like their peers can.

In severe scoliosis, i.e., in individuals with curves measuring more than 50° and presenting significant aesthetic and developmental deformities despite undergoing orthotic/bracing treatment properly administered according to the SOSORT criteria, surgery is indicated. 

“In some cases, patients who undergo corrective surgery for scoliosis may reduce their level of physical activity postoperatively due to a loss of spinal flexibility and pain. This inevitably impacts negatively on their quality of life – says dr Carmelo Pulici, physiatrist – No guidelines have yet been published on the resumption of physical activity after surgery for adolescent idiopathic scoliosis, and “expert opinion” is therefore all we have to rely on. Consequently, different surgeons may give different indications, depending on their experience and the particular type of approach”.

There are also individual factors at play, and the decision to resume physical activity may therefore depend on: the type of surgery performed, how the body responds and adapts to the metal rods inserted to correct the spine, the extent of the fusion, how recently the surgery was carried out, the characteristics of the patient, and also the type of sport practised (non-contact, contact or collision).  

For example, while some surgeons allow contact sports to be resumed six months after surgery, others recommend waiting a year, and some even rule out the resumption of collision sports altogether (https://pubmed.ncbi.nlm.nih.gov/26920125/). 

“In one study, return to sport/physical activities after surgery was examined using a specially created questionnaire (https://pubmed.ncbi.nlm.nih.gov/28604495/). By six months, most patients had returned to the activities they did before the surgery” – explains Dr Pulici. “The authors found that patients returned to athletics much earlier than expected. Despite this, there were no cases of loss of correction, implant failure or complications among the 95 patients included in the study”. 

A new surgical technique

In recent years, there has been a growing interest in vertebral body tethering (VBT), a new surgical technique used only in children and in early adolescence and, even then, only in carefully selected patients, given that the method is still experimental. VBT is proposed as a possible alternative to spinal fusion (currently the most widely used technique for the surgical treatment of scoliosis). Unlike spinal fusion, it does not reduce the mobility of the spine. 

“According to a recent study, VBT allows daily activities and sports to be resumed within three months of the surgery” Dr Pulici goes on. “Furthermore, most of the patients examined in the study reported an improvement in their athletic performance, and some were found to be doing more sports than before undergoing VBT”.

Even though surgeons today tend to allow patients to return to sports (even high-intensity ones) earlier than in the past (https://pubmed.ncbi.nlm.nih.gov/34267153/), we are still a long way from seeing a common approach to the management of postoperative resumption of physical activity in this patient population.

In the absence of guidelines, we at Isico recommend that patients turn to an experienced therapist in the post-operative period to ensure a gradual and safe return to physical activity, obviously following the instructions received from their surgeon.

It is important to avoid falling into the vicious cycle of a sedentary lifestyle. The less active you are, the less you feel inclined to do physical activity and the greater the risks to your health due to your lack of movement.

Twins with the wind in their sails

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Mario and Giorgio, 18, are twin boys who have always shared countless passions. They were born and grew up in the Dolomites, close to Lake Garda, and naturally grew to love the range of adventurous activities offered by this spectacular part of the world. 

They spend their free time rock climbing or careering madly along paths on their mountain bikes. But their number 1 thrill is whizzing like torpedoes across Lake Garda, skimming its surface with the wind blowing off the lake in their sails.
Both boys had loved sailing ever since they were children. They were, in fact, already junior champions when they received the unwelcome news that they both had severe scoliosis, which was preventing their spines from developing normally.

In both cases, the curve was so marked that there was no alternative: the medical prescription was to wear the brace full time for the first year of treatment, meaning 24 hours a day.

It was immediately apparent that, with a brace on, one particular sailing action would be impossible: during rapid turns, the boys would not be able to squeeze along the bottom of the boat to pass under the boom.  

However, with the help of their trainer and the support of their sailing club, they found a solution: the boys were given a new boat to use together, one in which, due to its particular structure, the boom was positioned higher. 

Although, for this reason, the boys had to switch to a new category, they could continue training and competing successfully.

By the second year of the treatment, Mario and Giorgio were already permitted to leave their braces off for part of the day, long enough to start training and competing unbraced, thus entering other categories compete with other crews as well. 

In 2021, Giorgio and his racing partner Isotta were invited to be part of the Italian national team competing in the Youth World Cup in Oman. There, he attained an excellent eighth place and this, together with a third-place medal in the team event, more than made up for all the sacrifices he has had to make. Although Giorgio was brace-free when competing in Oman, both boys still have to brace up at night. As for us, we are proud to think that one of our Sforzesco braces has been worn not only during Giorgio’s free time and travels but also (when he was not competing) under his Italy kit!

Well done, lads, keep on chasing that dream: you never know, one day we might see you aboard the Luna Rossa winning the America’s Cup for Italy!

Arabic version of the ISYQOL

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Several questionnaires are available to assess Health-related quality of life (HRQOL) following conservative and surgical interventions for various spinal conditions.
Among these, the Italian Spine Youth Quality of Life (ISYQOL) questionnaire was developed to evaluate health-related quality of life in adolescents with Idiopathic Scoliosis and showed high validity in measuring HRQOL. 
After Chinese, Korean and Polish versions of the ISYQOL,  the study, Cross-cultural adaptation and validation of the Italian Spine Youth Quality of Life (ISYQOL) questionnaire’s Arabic version, aimed to undertake the process of adaptation of the questionnaire into the Arabic language (ISYQOL-Ar) and evaluate its validity and reliability, and to correlate it with the validated revised Scoliosis Research Society (SRS-22r)’s Arabic questionnaire in a cross-sectional multicenter study.
The ISYQOL was translated, back-translated, and reviewed by an expert committee. Reliability assessment for the questionnaire domains was performed using Cronbach’s alpha.
 A total of 115 patients were enrolled in the study and completed the ISYQOL-Ar and Arabic SRS-22r questionnaires.
The ISYQOL-Ar questionnaire is a reliable and valid outcome measure for assessing young patients with spinal deformity among the Arabic-speaking population.

Scoliosis in the mirror: aesthetic concerns and psychological support

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We are all critical when we look at ourselves in the mirror, and we tend to focus on and analyse the smallest detail, to the point that we sometimes get quite worked up about perceived flaws or defects that others probably don’t even notice.
This also applies to curves and asymmetries due to conditions like scoliosis. Indeed, to a young scoliosis patient these changes can appear extremely prominent, even when their friends and relatives insist that they can’t see anything wrong with the youngster’s back.

First of all, a brief preliminary remark. As part of scoliosis treatment, it is crucial to consider the appearance of the patient’s back.
This is not only because improving its overall aesthetics is one of the aims of the treatment (Negrini et al., 2018), but also because any change in its appearance, major or minor, can have a considerable psychological impact on the individual in question.

Of course, the way we see our own body and other people’s bodies is highly subjective, and aspects of our own body that bother us might not be the same aspects other people notice.

“For some scoliosis patients, the presence of asymmetries of the waist or shoulder blades, or a hump, will be an unbearable problem, whereas other patients may be quite unconcerned about them” says Dr Irene Ferrario, Isico psychologist. “And this can be entirely independent of objective clinical assessments; it may depend on the individual’s mood at the time, or on how much importance is attached to physical appearance in a given setting”. 

Sometimes, patients’ concerns about their appearance become disproportionate, turning into actual fixations that lead to them pouring far too much time and mental energy into working out how they can conceal their perceived defects.

“Having said that, minimising the patient’s concerns or trying to convince them that they don’t have any defects can, in some cases, be counterproductive” warns Ferrario. “Indeed, in the most severe cases, trying to appeal to reason to dispel concerns only has the effect of losing you the patient’s trust.”

Why seek psychological support

Therefore, it is advisable to seek help from a psychologist or psychotherapist in these cases. Unfortunately, many patients are reluctant to take this step as they remain convinced that removing the physical defect is the only way to resolve the problem and feel better. 

This is why scoliosis treatment must also address psychological needs to be effective.

On the one hand, specialists need to understand their patients’ distress and show them that they recognise the reasons for it. Once it is clear that a patient feels heard and understood, the therapist should then gradually and cautiously begin the process of formulating and presenting other possible reasons for the distress, helping the patient to know where it comes from and how it can be impacted by their environment and the people around them.   

“When we look at ourselves in a photo or in the mirror, we think we are seeing exactly what other people see when they look at us,” says Dr Ferrario, “but our eye is well trained to focus on the things we do not like about ourselves and thus to play on our insecurities. Whereas others see us as a whole and do not to dwell so much on specific details, we tend to analyse ourselves in minute detail, and our attention is always immediately drawn to the particular thing we are uncomfortable with.”

The main objective of psychological counselling, therefore, is to reduce, as much as possible, the discrepancy between the way we would like others to see us (our ideal self), how we think others should see us (self-guide), and how others see us (our real self).

“The course of treatment we do with our patients aims to help them rebuild their body image by encouraging greater awareness of their strengths and weaknesses” Dr Ferrario concludes. “Gradually, over time, patients manage to internalise this new image and eventually form a more realistic view of themselves. Patients also become more accepting of the aspects of their body that they used to see in a negative light”.

The importance of observational studies

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Our study, Observational Studies: Specific Considerations for the Physical and Rehabilitation Medicine Physician, was recently published in the American Journal of Physical Medicine & Rehabilitation. 

Experimental and non-experimental designs are used to investigate the effect or association of an intervention and clinical or surrogate outcome. These methods aim to improve knowledge and develop new strategies to manage a disease or condition. 

While experimental research studies entail scrutiny by the scientist and provide results that are less prone to systematic errors, their downside is that they are poorly generalisable. “What all this means in clinical terms,” explains Dr Sabrina Donzelli, physiatrist at Isico and first author of the published research,” is that a treatment that worked fine during a study may in the long term, following its prescription by a hospital or general practitioner, throw up problems that did not emerge in the experimental research”. 

Therefore, to verify what happens in the real world, non-experimental studies, called observational studies, can be carried out, of the kind dealt with by the research we have just published. 

Well-designed observational studies can provide valuable information regarding exposure factors and the event under investigation. 

“Basically, what the researcher does is simply observe data, without having the possibility to manipulate it”, Dr Donzelli goes on. “The researcher’s task is to interpret and contextualise the results, taking into account all potential errors introduced during the selection of the study sample. To eliminate, as far as possible, systematic errors that could lead to incorrect evaluations and interpretations, it is necessary to implement a series of methodological strategies that are not very widespread in the rehabilitation field.” 

In physical and rehabilitation medicine, where complex procedures and multiple risk factors can be involved in the same disease, the use of observational study must be planned in detail and a priori to avoid overestimations. 

“This is why we wrote this article, to offer clear suggestions to researchers in the rehabilitation field who are interested in planning an observational study”, concludes Dr Donzelli. “We give an overview of the methods used for observational design studies and describe when it is appropriate to use them and how to do so in different scenarios”. 

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.

The Risser sign, growth and scoliosis: let’s clear a few things up

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When patients come for medical consultations or physiotherapy sessions, numerous measurements get taken and recorded, often without less expert eyes even noticing.

On the other hand, other measurements are quickly seized upon, both by parents and youngsters. Take height, for example. The sliding piece barely has time to touch the patient’s head before the patient, hopeful, blurts out: “Have I grown? Can I leave off my brace now?”

Another milestone we are promptly informed of is menarche in girls, as parents are often convinced that when their daughters start their periods, they have finished growing, meaning that their treatment can come to an end. But this isn’t always the case. On the contrary, this delicate phase can sometimes coincide with the most marked progression of the disease, making it all the more important to act with caution.

Although these are two important examples of the many factors that need to be taken into account to work out what point a youngster’s growth has reached, it has been shown that increases in height and menarche do not necessarily coincide with the individual patient’s growth peak [1] and may therefore not be helpful and/or sufficient when it comes to deciding on the best course of treatment.

Since these manifestations are secondary growth characteristics, they can only be seen as an indication that the patient’s growth spurt has begun. What they do not tell us is precisely how far on it is. There is a scientific explanation for the traditionally held belief that girls “develop earlier” than boys. In fact, because testosterone starts to be released into the body after oestrogens, boys start their pubertal growth spurt later than girls.[1]

To manage scoliosis and optimise the treatment results of the condition, it is crucial to have a good idea of the patient’s residual growth potential and the time remaining until he/she reaches skeletal maturity. An accurate prediction of the growth rate is also required to know when the deformity is likely to be most at risk of progressing. On the other hand, once it has been established with certainty that the patient has finished growing, this is the time at which preventive measures can be stopped with only minimal risk of further deterioration of the curve. [1]

There are various methods we can use to evaluate bone growth in adolescence, and one of them is called the Risser sign.

An individual’s Risser grade can be determined from an anteroposterior X-ray of the spine. An advantage of this method is that the same X-ray can be used to measure both the number of Cobb degrees (necessary to diagnose scoliosis) and the degree of skeletal maturity, thereby limiting the patient’s radiation exposure.

From 0 to 5, Risser grades are assigned based on the amount of calcification present in the iliac apophysis, and the scale thus measures progressive ossification. A Risser grade 0 indicates a low degree of bone maturity: this status is present from birth through puberty.

A Risser grade 5 means that the iliac apophysis has fused to the iliac crest, and the structure is 100% ossified: this status is present in adults  [2]. 

It would be misleading to imagine the transition from Risser 0 to Risser 5 as a continuous and constant progression that occurs over a fixed time and at a set pace. This is because growth is not constant but proceeds at different rates in the different phases. There are times when it pauses, times when it speeds up considerably, and times when it slows down.

The crucial stage in a youngster’s growth, also vital for understanding the course of their scoliosis, is the pubertal growth spurt, during which the disease can alter the shape of the patient’s back in the space of just a few weeks. From the perspective of a Risser evaluation of skeletal maturity, this stage corresponds to the transition from Risser 0 to the complete acquisition of Risser 1.

Between Risser 2 skeletal maturity and the end of the Risser 3 stage, the growth spurt slows down, but as far as the scoliosis treatment is concerned, we still cannot lower our guard: the patient should continue to receive treatment.

Scoliosis treatment is brought to an end gradually as skeletal maturity increases. Once the patient has reached Risser grade 5 (complete skeletal maturity), the treatment can be terminated safely without fearing that some of the hard-won gains might be lost.  

The Risser classification varies slightly in different parts of the world, with some differences found, in particular, between Europe and America. In Europe, the successive grades tend to be assigned more cautiously, in the sense that a patient is deemed to have passed from one stage to the next only in the presence of precise levels of bone maturation. On the other hand, the American tendency is to assign the successive grades sooner.

Another method for assessing skeletal maturity is the Sanders classification, whose eight grades are assigned based on the assessment of hand bone growth [3]. Some studies have found the Sanders classification more precise than the Risser sign. It shows higher staging sensitivity when growth is most rapid and is therefore more reliable during certain growth phases [4]. The problem with the Sanders classification is that it requires a separate X-ray of the hand, which therefore means that it could increase the patient’s radiation exposure.

All this information clearly shows that residual growth is essential to evaluate, but at the same time, difficult to establish and interpret.

Specialists can, of course, use the classification they prefer, which will be the one that, in their experience, works best for identifying and evaluating the growth peak in adolescence. It is essential that they can correctly interpret all the data they collect, including from radiographs and patients themselves, to optimise the timing and results of the treatment. 

References

[1] Cheung JPY, Luk KD. Managing the Pediatric Spine: Growth Assessment. Asian Spine J. 2017 Oct;11(5):804-816. doi: 10.4184/asj.2017.11.5.804. Epub 2017 Oct 11. PMID: 29093792; PMCID: PMC5662865.

[2] Greiner KA. Adolescent idiopathic scoliosis: radiologic decision-making. Am Fam Physician. 2002 May 1;65(9):1817-22. PMID: 12018804.

[3] Sanders JO, Khoury JG, Kishan S, Browne RH, Mooney JF 3rd, Arnold KD, McConnell SJ, Bauman JA, Finegold DN. Predicting scoliosis progression from skeletal maturity: a simplified classification during adolescence. J Bone Joint Surg Am. 2008 Mar;90(3):540-53. doi: 10.2106/JBJS.G.00004. PMID: 18310704.

[4] Minkara A, Bainton N, Tanaka M, Kung J, DeAllie C, Khaleel A, Matsumoto H, Vitale M, Roye B. High Risk of Mismatch Between Sanders and Risser Staging in Adolescent Idiopathic Scoliosis: Are We Guiding Treatment Using the Wrong Classification? J Pediatr Orthop. 2020 Feb;40(2):60-64. doi: 10.1097/BPO.0000000000001135. PMID: 31923164.

Isico science corner video column

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At Isico we give great importance to research, an integral part of our clinical work.  
Our newsletters always dedicate a space to the presentation and a comment when a new Isico study is published. 
From this issue on, we will go one step further, enriching each presentation with the video commentary of the first author of the research paper. We are pleased that it is just our scientific director Stefano Negrini, the first author of the article, launching the new Isico Science corner video column with a study of such great importance.

A closer look at the data

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The study just published, A Pragmatic Benchmarking Study of an Evidence-Based Personalised Approach in 1938 Adolescents with High-Risk Idiopathic Scoliosis, focused on 1938 participants with AIS, Cobb angles of 11–45°, and Risser stage 0–2, who were studied until the end of growth. 

Using the inclusion criteria reported in existing RCTs on physiotherapeutic scoliosis-specific exercises (PSSE), plastic bracing (PB), and elastic bracing (EB), we benchmarked 590, 687, and 884 members of our study population, respectively.
The study showed EBPA to be from 40% to 70% more effective than benchmarked individual treatments, with a low number needed to treat (NNT). 

“We evaluated clinically significant results and burdensomeness of care, calculating the relative risk of success and the NNT for efficacy”, explains Dr Sabrina Donzelli, Isico physiatrist who contributed to the data analysis. “In randomised studies, patients are randomly allocated to one treatment or another, to ensure that all patients have the same probability of being treated or observed. This randomisation process is necessary to rule out factors (such as physician choice of treatment) that could affect the outcome. We compared our PB, EB, and PSSE subgroups with the corresponding paired RCTs for benchmarking purposes. The probability of success in patients treated in EBPA is between 1.5 and 3.5 times that of natural history and between 1.2 and 2.9 when compared to per-protocol treated groups. Although surgery could not be avoided completely, only 2% of our patients ultimately needed it, compared with 28% of those belonging to the comparison studies’ untreated control groups”.

Patient compliance is the factor underlying the significant difference in these results.