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Prof. Stefano Negrini at the World Health Assembly as Cochrane representative

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From May 23 to 26, Stefano Negrini, scientific director of Isico, participated as a Cochrane representative in an event of the World Health Assembly, the main decision-making body of WHO. The event is co-organised by missions to WHO from five countries and several scientific, professional, and patient organisations in the field of rehabilitation.

The theme of this year’s Health Assembly was WHO at 75: Saving lives, driving health for all.

On May 25, the event “Strengthening Rehabilitation in Health Systems: What’s at Stake?” took place on the sidelines of the World Health Assembly to discuss advances and challenges in integrating rehabilitation into health systems.

After the approval of the resolution on rehabilitation by the General Assembly of all Ministers of Health in the world, Prof. Negrini was one of the speakers at the workshop organised by the World Rehabilitation Alliance, in which Negrini represents Cochrane, a global independent network of researchers, professionals, patients, carers, and people interested in health.

“It is the first time that there is a resolution on rehabilitation by the World Health Assembly – comments Prof. Negrini – Rehabilitation is an essential component of universal health coverage. The lack of access to rehabilitation may expose persons with rehabilitation needs to higher risks of marginalisation in society, poverty, vulnerability, complications and comorbidities, and impact on functioning, participation and inclusion in society. The negative impact on people’s lives also causes an important economic burden on societies””.

Isico: our first 20 years

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2003-2023: 20 years of activity, two decades of steady growth, from a small clinic in Milan staffed by a handful of specialists to our current network of centres in 37 cities and a team of 101 medical/health professionals and administrative staff. Over the past 20 years, we have looked after over 51,000 patients and created a Clinical and Scientific Institute, recording a number of achievements. We have set up and established a national congress and an ISICO Master course, offered both nationally and internationally, that now runs into several editions; replaced plaster casting with the “Sforzesco” brace, widely shown to be effective; created a blog and a customised app for patients as well as Scoliosis Manager, a software package for specialists; diffused our exercise-based approach to scoliosis (SEAS)  through hundreds of courses worldwide; and launched a telemedicine service to support patients during the difficult months of the pandemic. A series of “stories” that, together, add up to an “incredible” two decades.

“These are results that we ourselves find rather remarkable, looking back,” says the director of Isico, Alberto Negrini. “They leave us feeling hugely proud and also grateful to the patients who have entrusted us with their care. We started out with a precise objective, which was also our mission for the first 10 years: to promote, in Italy, a scientific evidence-based approach to the conservative treatment of vertebral disorders. Building on the experience of the Scoliosis Centre in Vigevano, which has been active in the field since the 1960s, we built a working group able to export our approach and treatment model.

This mission allowed us to clearly define our purpose — the rehabilitation of vertebral pathologies —, our method — an approach based on treatments validated in the scientific literature —, and our geographical horizons — the whole of Italy. Into all this, we weaved some fundamental elements, such as a humane and person-centred approach, the formation of therapeutic teams, and continuous staff training.

On the clinical side, it was immediately clear that our work should be built around two main areas: vertebral deformities (scoliosis, kyphosis, etc.) and pain (particularly low back pain, and neck pain).

From the very early years, we found that the real demand on the ground was in the first of these areas: patients with vertebral deformities were clearly struggling to find valid and effective answers. Consequently, this area of our activity grew far more quickly than the other, to the point that it now accounts for 85% of all the clinical work we do.

Our scientific approach led us to start continuously monitoring developments in the scientific literature, something we do in constant collaboration with the Gruppo di Studio della Scoliosi e delle patologie vertebrali (GSS) — scoliosis and spinal disorders study group, and forerunner of ISICO, which was set up in 1978 —, but also to play an active part on the global scientific stage, thus entering a world in which, when we started out, little was known or said about the non-surgical treatment of spinal deformities. This was the start of our extensive scientific activity, which quickly earned recognition abroad and has led to the publication of numerous works (over 230 to date), most with immediate clinical applicability. Another important aspect is the support we lent to the creation of what was about to become the sector’s international scientific society of reference (SOSORT), which, with the help of our specialists, was founded in Milan during the 2005 international congress organised by ISICO at the Palazzo delle Stelline.

And so on to our aim to cover the whole of Italy. This was a highly ambitious target, which led us to adopt, from the outset, an organisational model that, based on an information system developed internally, was designed to allow us to grow beyond our initial (few) clinics,” Alberto Negrini explains. “These investments of time and resources left us in considerable difficulty in the first years, when our economic performance was very poor, but they also sustained our growth once the work done at the start began to bear fruit, allowing us to launch an expansion that has been constant, with the result that we are now present in 37 cities and 16 regions.

Indeed, 10 years in, when the goal that had initially seemed so ambitious was gradually being reached, our horizons expanded. Thanks to the growth of SOSORT, our participation in European research projects, and the growing demand for training from other countries, the international side of our activity took on an increasingly important role. Hundreds of patients from abroad have come to be treated in our clinics, and we have trained thousands of health professionals abroad through courses including our ISICO Master course.

Looking back, we can certainly say that this has been a success story, and I would say that the key to this success lies, more than anything, in the people that have worked at ISICO over these past 20 years, building and guaranteeing its reputation” Negrini says. “Thanks to their approach, which is both caring and professional, patients trust us and believe in us, which translates into very high approval ratings and has a positive “word of mouth” effect. At the same time, the rigorous way in which we work and record data has given us credibility in the eyes of other professionals. And our name has spread both in Italy and abroad, though numerous visits to and internships at our clinics, and also through our published scientific work.” 

What do the next 20 years hold for ISICO? “Starting from where we are today, and bearing in mind that, as the pandemic has taught us, you never know what might be just around the corner, there are two things we have in mind,” Negrini concludes. “On the one hand, to go on expanding in Italy by developing spaces that will allow us to diversify what we do, and on the other, to keep expanding our activities abroad, through research projects and new opportunities for collaboration. Another 20 years in which we will go on always striving to offer patients the best possible care, based on scientific evidence but also on medical and human experience, because the therapeutic team must always focus on the whole person.”

Adherence to treatment: the abstract for Sosort Conference

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“Adherence to Physiotherapeutic Scoliosis-Specific Exercises during adolescence: voices of patients and their families. A qualitative content analysis” is one of the 8 studies being presented by ISICO during the forthcoming SOSORT international conference in Melbourne, Australia.
Its purpose was to explore the experience with PSSE of adolescents with spinal deformities and their parents, and their insights on how to assess the quality and frequency of PSSE performed at home.
The study is the exploratory phase of the development of a new Rasch-consistent questionnaire to assess adherence to PSSE in adolescents with spinal deformities. 

“The efficacy of specific exercises for scoliosis is closely linked to patient adherence to the treatment programme,” says Dr Irene Ferrario, ISICO psychologist and author of the study. “Treatment adherence is a complex concept, as it is the result of the interaction of various factors associated with patients, families, therapists and the treatment itself. Managing to identify the factors that promote or prevent treatment adherence is crucial in order to help youngsters get the best possible result. In this study, we set out to look at how our patients and their parents get on with scoliosis exercises, and examine their ideas on how the quality and the quantity of exercises done at home might be assessed”.

How did we collect the data? The researchers sent 2699 patients a questionnaire made up of open questions designed to collect thoughts and experiences with respect to adherence to a home exercise programme; 110 adolescents and 93 parents filled in the questionnaire anonymously. On the basis of what they wrote, we identified the five main categories of factors that can facilitate or hinder treatment adherence: “Organisation of time and space”, “Help tools”, “Understanding the therapeutic goals”, “Loneliness”, and “Nature of the exercises”.  

The most commonly reported facilitating factors were: using an app specially developed by ISICO, being able to listen to your favourite music while doing the exercises, being able to decide when to schedule the home sessions, and certain characteristics of the exercises (e.g., easy, fun, not requiring specific instruments). The factors most commonly deemed to hinder treatment adherence were lack of time, lack of motivation, lack of feedback from the physiotherapist, and type of exercises (i.e., boring ones).

“Patients and their families know what can help or interfere with their adherence to a home exercise programme for scoliosis” Dr Ferrario concludes. “Listening to what they have to say about the various factors that can hinder or facilitate them in this regard can help physiotherapists to develop exercise programmes tailored to patients’ specific needs and offer solutions and strategies to overcome common problems, thereby helping youngsters to more easily achieve the goals of the treatment.”

Why the therapeutic team is part of the treatment

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Scoliosis treatment, whether we are talking about exercises alone or also bracing, can be an uphill battle in which adherence to the therapy itself is always fundamental. 

“A famous study conducted in the US and published in 2013 (Weinstein SL, Dolan LA, Wright JG, Dobbs MB. Effects of bracing in adolescents with idiopathic scoliosis. N Engl J Med. 2013 Oct.) confirmed beyond doubt the effectiveness of brace therapy in arresting the evolution of idiopathic scoliosis. And the patient’s adherence to the treatment was the factor that most influenced the result,” underlines physiotherapist Alessandra Negrini.

To ensure that a youngster manages to be collaborative in carrying out this demanding therapy, especially considering that it is often undertaken during early adolescence which is a notoriously tricky time, it is essential that all those interacting with the patient and with their family make sure they are always on the same page, giving clear and consistent messages.

With this in mind, it is easy to see why the therapeutic team, by encouraging patient compliance, plays such an important role in achieving the goals set.

Educating children and parents means explaining the nature of the disease, together with its possible course and potential consequences, setting and explaining realistic therapeutic objectives and rules to follow while performing physical (including home-based) exercises, and ensuring that there is cooperation with the physiotherapist and physician supervising the treatment. Specific physiotherapeutic exercises should be conducted by a trained and certified physiotherapist operating within a therapeutic team that includes a psychologist, orthotist, orthopaedist, and medical rehabilitation specialist.  

The team that takes on the patient’s care needs to manage to lighten the burden of the treatment, and help the patient and their family to cope with the situation. 

Within the multidisciplinary team, the physiotherapist is the patient’s point of reference, the one who motivates and, when necessary, re-motivates them. The physiotherapist is also the linchpin of the team itself.

 “In view of this important role, the physiotherapist should always bear in mind three key rules that I always think of (in Italian) as the 3 As, explains physiotherapist Marta Tavernaro. The first “A” stands for addestrare (coaching), which reminds me of the need to explain to patients what is happening to them, what scoliosis actually means, and how we and they can prevent it from getting worse. The second “A” stands for approccio (approach), which in this case means being enthusiastic about what we are doing and conveying this to the patient; the third “A”, both in Italian and English, stands for “acquire”, in the sense of collecting the information you need to know whether the youngster in your care has been working effectively.”

During the rehabilitation process, the therapist may become aware of specific problems concerning the family and/or the young person that could jeopardise the treatment. The psychologist is the team member ideally placed to manage these difficulties.

In this regard, it is important to remember that this course of treatment is followed in what is already a difficult and delicate life stage, characterised by sudden changes that influence the young person’s developing personality and how they view their role in society: all of this can have important repercussions on the therapy.

“When we are working within a biopsychosocial model of care, we must of course also keep the psychological aspects in mind,” points out ISICO psychologist Dr Irene Ferrario. “In this case, adopting a person-centred approach means not only measuring the individual patient’s Cobb angle, but also taking into account their emotions and feelings at this particular time in their life. When the doctor or therapist senses that there is an underlying problem, they seek the intervention of the psychologist on the team, who, through individual counselling or psychotherapy, will probe and identify the factors responsible for the change.”

An ISICO study published a few years ago (Importance of team to increase compliance in adolescent spinal deformities brace treatment: a cross-sectional study of two different settings) highlighted the role of the therapeutic team. As pointed out by one of the authors, ISICO physiatrist Dr Andrea Zonta, “the concept of compliance has to be understood in a broad sense, and therefore as adherence not so much to the use of the brace or the prescribed programme of exercises, as to the entire therapeutic pathway, which can last years. After all, we will not obtain lasting results if we think we can intensify the exercises for a certain amount of time and then just abandon them”.
In our research, the population was split into two groups according to the setting in which the treatment was performed and the two groups were administered two questionnaires: the SRS-22 [3, 4], and another, specially developed, one (QT) with 25 multiple choice questions about adherence to treatment (sections: brace, exercises, team).In fact, since the population was chosen as having been treated by the same orthotist and physician, the only distinction between the two populations was in the physiotherapeutic and general team approach.

“If the therapeutic team is not working properly, and I refer particularly to the professionals involved, there is a great risk of pain and decreased QoL. The same is true with regard to compliance with bracing” concludes Dr Zonta. “Moreover, this study has shown that the SOSORT management criteria can be important for brace treatment. The results seem to confirm that the management of patients is sometimes neglected, probably because it is an aspect not understood or perceived by the people involved; nevertheless, effective patient management could (through increased compliance) be a main determinant of the final results and/or the patient’s immediate QoL”.

Why we at ISICO “talk in front of the children”: the importance of patient participation

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Although “talking in front of the children” is a deliberate “policy choice” on the part of our organisation, we are sometimes criticised for it in quality assessment questionnaires. Some parents, for various reasons, like to have a separate consultation with us, either before or after seeing the patient, but as doctors and therapists, this request always makes us uncomfortable. Let us explain why.

Scoliosis treatment, whether we are talking about boring exercises, a bulky brace, or even a delicate and risky surgical operation, is always invasive to some degree. Therefore it is crucial to ensure we have the patient’s conscious and willing participation. After all, exercises must be done actively and carefully, a brace must be worn, and kept tightly fastened, for many hours at a time, sometimes even round the clock, and the surgical option is invasive and painful and also has permanent consequences.

How many of us would be willing even to consider undertaking an invasive treatment without first understanding why we need it and what the implications are if we do (or don’t) go ahead with it, and above all without being sufficiently motivated? What’s more, with scoliosis, there is also another consideration.

Whenever scoliosis occurs, the worst stage is always during adolescence. This is the period in our life when our personality is formed and when, as individuals, we distinguish ourselves from our parents, who remain key figures in our lives but from whom, to a greater or lesser degree, we need to break away.

It is when the first parent-child conflicts arise, usually with the parent of the same sex, and sometimes with both. It is the moment we really discover our own body and the other sex, a period more or less marked by hormonal impulses.

Youngsters of this age will usually be very resistant to anything concerning them that is done or decided without their consent or involvement: in this particular case, we are talking about an aspect of their health, about their body (with which they may already have a tricky relationship, and what more personal and private aspect of life can there be than our body?), and about a treatment that always difficult and invasive to some degree.  

A further element in all this is the therapeutic alliance that is formed between the doctor and the patient, often with the mediation of parents, but never without involving the patient. If a doctor struggles to talk to the patient directly, perhaps looking the parents in the eyes and only covertly glancing at the patient, pretending to address the adults present, but really directing the conversation at an adolescent who is pretending not to hear, then the whole patient-doctor relationship, the crucial basis of any therapeutic alliance, will fail. And if this alliance cannot be formed, then nothing can be achieved.

In establishing the therapeutic alliance, it is necessary to set out the sacrifices involved, perhaps trying to sweeten the pill a little to reach the required agreement. And this agreement must be between two people: the doctor and the patient.

I, too, am a parent, and I well understand the importance we parents attach to our children’s wellbeing.
I would love to spare them life’s difficulties, but I know that the key thing, instead, is to prepare them to face them.

I know that the main thing is to ensure they find the right help so that they can face difficulties head-on rather than just endure them. Because what matters in life, even more than the result, is how we deal with things along the way: we all know that you can’t win all of the time, but if you give up before you even start, you will never win at all. Illness, especially one that occurs early on, when a young person is still growing, is undoubtedly a tough test, but, despite themselves, youngsters can find it becomes a formidable tool allowing them to grow with a balanced mindset, able to recognise the importance of external help and to find, deep inside themselves, the resources they need to cope with the treatment they need.

We, parents, are often the first to underestimate just how strong our children can be. We try to protect them, thinking we’re helping them, when our job is not to stand in for them but rather to make them independent, able to take flight by themselves and face any difficulties they may encounter. We need to be willing to let our children and teens amaze us, which means we must stop continually thinking that they are too small to understand (the Little Prince said the same thing!).

Secrets, above all, are to be avoided in this setting, and the patient will always interpret any private meetings between the doctor and the parents as “secrets” being discussed behind their backs.

And what about younger children? In scoliosis treatment, as in other settings, today’s children are tomorrow’s adolescents, and building a relationship with an adolescent should start in childhood. And we can assure you that children are just as attentive as teenagers are, even though their tranquillity and peace of mind will depend on their parents achieving and conveying the same.
Sometimes it is the children who would instead escape from the situation and leave their parents to gather all the information about the treatment they face. Still, such children tend to be already fearful, anxious and distressed, which makes it even more important to reassure them and involve them. Not in an aggressive or overbearing way, of course, but always bearing in mind and respecting their inner pain. And the parents’ role is crucial in all of this.

In short, there can be no going behind our young patients’ backs: to do so is wrong and counterproductive, as it undermines the relationship that must be formed with the person at the centre of the treatment: the patient. Talking openly demands care and sensitivity, and we always remember this and routinely show both to whoever seeks our help. We weigh our words carefully, especially considering the most delicate participant in our discussions: the patient.
Over the years, we have learned that a good patient can overcome the disadvantage of absent parents, whereas no parent, however good they are, can ever make up for the absence of the patient, who is the true and only protagonist of scoliosis treatment.

Should we go for the straight back goal?

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Paola has scoliosis: her back is twisted on itself. Therefore, she has been given a brace to wear — a nice plastic “jacket” that she is actually going to have to wear for some years to come. But why? Well, to straighten her back, of course!

This, of course, is the logical answer, but unfortunately logic and medicine don’t always go hand in hand.

Many people also think, again quite logically, that surgery can eliminate the problem of scoliosis, but the reality is that surgery simply fixes a section of the spine with screws and bolts, blocking the curve in order to stop it from worsening. And even in those instances when the surgeon manages to almost straighten the patient’s back, we have to ask ourselves whether a surgically treated scoliotic spine can ever possibly be the same as before? 

The answer is that, obviously, it can’t – the fixation devices (screws and bolts) used to arrest the progression of the curve are constraints that will prevent single segments of the spine from moving.

In reality, many, if not all, treatments used in medicine don’t solve, erase or even fix the problem they are addressing. Therapy gives us the instruments we need to manage, as well as possible, our condition and all the problems it brings.

Take diabetes, for example. You have diabetes? No problem, just take a drug before each meal: it will control your blood sugar level. What it won’t do, however, is get rid of your diabetes.

The same goes for scoliosis. Scoliosis can’t be erased; it can’t be eliminated. If you have it, the first thing you have to do is accept that you have a totally manageable health problem. Then you simply have to roll up your sleeves and get on with the business of “taming” it. Try thinking of it like a wild horse, but one that we can certainly tame and keep under control. Just don’t expect to able to transform it into a fluffy little pet — it will always retain some of its wild spirit!

Receiving a diagnosis is always a difficult moment: it doesn’t matter what disease you are being told you have. Therefore, accepting the presence of an imperfection is hard, both for patients and for their parents.

Sometimes it seems easier to pretend that the problem is not there, and with scoliosis it is certainly easy to do this: first of all, being “behind us”, it is harder to see. Also, at the outset it is not particularly noticeable, or may even be almost invisible externally. Unfortunately, however, scoliosis, is sneaky and very insidious, and sooner or later it forces us to face reality. That’s when we find ourselves, once again, weighing up the treatment options. There will always be more than one treatment option, but as time goes by the possible outcomes change, and therefore so, too, do the objectives of the treatment!

The ultimate objective in scoliosis treatment is to ensure that the patient has a healthy and functional back by the time they have  finished growing, and that does not mean a straight back! A healthy back is one capable of withstanding the stresses and strains of daily life for the 70 or so years that we can, on average, expect to live once we have finished growing. It is also a back that will do its job without giving us pain, and without, over time, developing a major worsening of the curves.

Science has taught us that this objective is realistic, providing the curves are still under 30°-35° at the end of growth, which is hardly straight!

In pursuit of this ultimate objective, strongly supported by the SOSORT guidelines, medical prescriptions can differ between patients, even ones whose situation is apparently similar.

In some families, there will be more than one sibling affected by scoliosis, and even though these youngsters have the same disorder, its morphology may well vary. For example, one might have a dorsal curve and another a lumbar one. Similarly, the severity of the curves can differ: you might find one girl who can be treated with exercises alone, while her older sister has to wear a brace full time.

In these situations, misunderstandings can often arise! Let’s take an example.

Laura has scoliosis, an approximately 30° curve that was discovered when she was 14 years old. After examining her, the physician prescribed a rigid brace, to be worn 23 hours out of 24. By the end of the treatment her curves had improved considerably, her trunk was perfectly modelled and symmetrical, and her scoliotic curve had decreased to under 20°!

Laura has a sister, four years younger. From the time of Laura’s first examination, the physician caring for her began monitoring her sister, too. When she was 11 years old, the younger sister began treatment involving exercises alone. By the time she finished growing, however, her curve measured between 25 and 30 degrees!

At the end of the treatment, the mother was disappointed and worried about the younger according to the physicians’ instructions, for years bringing both daughters along for examinations and exercise sessions, only to end up with one daughter with worse curves than her sister.

In these situations, comparisons are inevitably made and the straight back misunderstanding arises! Nowadays braces aren’t as alarming as they once were and patients, providing they are properly informed, might well be tempted to think, why not wear one anyway, if it means I will end up with a good level of correction? 

Because the fact is that someone whose back is slightly curved (under 30º) at the end of growth will enjoy the same level of function and the same quality of life as a person whose back is straight. That’s why, as patients start out on their long and tiring therapeutic journey, we urge them to remember the motto: “let’s focus on function and not straightening up!”

Scoliosis and back pain: physical activity is the best prevention

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In the world’s richest countries, low back pain is so common that it has become one of the leading causes of disability and healthcare expenditure. Back pain in children should be taken seriously as it can reduce the amount of physical exercise they get, result in absences from school, and limit them in their everyday activities.

These brief opening remarks prompt a series of questions that our physiotherapist, Martina Poggio, here tries to answer in the light of the latest published data regarding a possible link with adolescent scoliosis.

How prevalent is low back pain in children and adolescents? 

In recent decades, a high prevalence (39.9%) of low back pain has been found in children and adolescents: one study found back pain to be associated with age (>12 years), a family history of the condition, spending more than two hours a day studying or watching TV, having an uncomfortable desk at school, suffering from generalised pain, and sleep problems. Evidence on the impact of heavy backpacks is conflicting.2

How common is idiopathic scoliosis among adolescents with back pain? 

Aetiologically speaking (in other words, when examining the possible causes of the condition), one retrospective study, conducted in almost 2000 patients under the age of 21 years, found the following underlying conditions: scoliosis, followed by Scheuermann’s disease and spondylolisthesis.1 However, since the role of spinal deformities in back pain is unclear, we reviewed recent literature on the association between pain and the most common adolescent spinal deformity, i.e., idiopathic scoliosis, which affects 1 to 3% of adolescents. Although idiopathic scoliosis was considered painless condition until a few decades ago, more recently patients seem to show a higher prevalence of back pain. What is not clear, however, is whether there is a marked association between this symptom and the spinal deformity. In studies specifically exploring its prevalence in adolescents with scoliosis, the rates range considerably: from 23% to 85%.

Does the severity of the curve correlate with pain intensity? 

One of main reasons for scepticism over a possible association between pain and scoliosis is the current debate in the literature on the link between the severity of the deformity and the intensity of the pain, and the association, more convincing, between pain and psychological factors (such as self-image and mental health status). Indeed, some patients with less pronounced curves showed more intense pain and vice versa, suggesting that spinal morphology is not the only factor at play.4

Some evidence from the literature suggests that the association between pain and scoliosis is not strongly linked to a biomechanical problem. Indeed, in most studies, pain did not correlate strongly with the magnitude of the curve (Cobb angle); untreated cases did reasonably well from a back pain perspective; epidemiological data revealed a much greater gender difference in scoliosis as opposed to back pain incidence; and patients’ self-image was found to be related to their pain. All these findings argue against a strong aetiological role of idiopathic scoliotic deformity in adolescent back pain.1 

Does back pain in adolescents with idiopathic scoliosis predispose them to pain in adulthood? What factors predispose adolescents with scoliosis to developing back pain?

In adolescents, early onset and persistence of back pain appear to be predictors of future back pain. A retrospective study showed that patients with thoracic scoliosis noted in their medical records were four times more likely to experience thoracic pain than those with no thoracic curve.5 Patients with scoliosis and back pain, compared with asymptomatic scoliosis patients, showed poorer physical function and sleep problems. Given that back pain has multiple causes, it is necessary to take into account depression, anxiety, catastrophising (i.e., having an exaggeratedly negative mindset towards actual or anticipated pain), and level of physical activity: all these factors can influence the perception and perpetuation of pain. 4,5 

In conclusion

“What recent studies show is that it is crucial to evaluated the youngster’s overall health in order to correctly evaluate back pain or possible risk factors,” explains Martina Poggio. “That means not just performing a physical assessment and encouraging the patient to get regular physical exercise, but also a psychological one, evaluating their self-perception and looking for anxiety, depression and drowsiness. These factors, although they may seem secondary in a case of scoliosis, could predispose the individual to the onset of back pain. Finally, it’s important to remind youngsters and their families that current data show no clear correlation between the deformity and pain, only that some people are more predisposed to pain”.

  1. “Prevalence of low back pain in adolescents with idiopathic scoliosis: a systematic review” Jean Théroux, Norman Stomski, Christopher J. Hodgetts, Ariane Ballard, Christelle Khadra, Sylvie Le May  and Hubert Labelle Chiropractic & Manual Therapies (2017)
  2. “Adolescent idiopathic scoliosis and back pain” Federico Balagué and Ferran Pellisé Scoliosis and Spinal Disorders (2016)
  3. “Back Pain in Children and Adolescents” Suraj Achar, Jarrod Yamanaka. Am Fam Physician (2020).
  4. “Back pain in adolescents with idiopathic scoliosis: the contribution of morphological and psychological factors” Alisson R. Teles, · Maxime St‐Georges, · Fahad Abduljabbar, · Leonardo Simões, · Fan Jiang, Neil Saran, · Jean A. Ouellet, · Catherine E. Ferland. European Spine Journal (2020)
  5. “How Common Is Back Pain and What Biopsychosocial Factors Are Associated With Back Pain in Patients With Adolescent Idiopathic Scoliosis?” Arnold Y. L. Wong , MPhil, Dino Samartzis , Prudence W. H. Cheung, Jason Pui Yin Cheung  Clin Orthop Relat Res (2019)
  6. “Prevalence of low back pain in adolescents with idiopathic scoliosis: a systematic review” Jean Théroux, Norman Stomski, Christopher J. Hodgetts, Ariane Ballard, Christelle Khadra, Sylvie Le May and Hubert Labelle. Chiropractic & Manual Therapies (2017)
  7. “Adolescent idiopathic scoliosis and back pain” Federico Balagué and Ferran Pellisé. Scoliosis and Spinal Disorders (2016)
  8. “Back pain in children and adolescents” Suraj Achar, Jarrod Yamanaka. American Family Physician (2020)
  9. “Back pain in adolescents with idiopathic scoliosis: the contribution of morphological and psychological factors” Alisson R. Teles, Maxime St‐Georges, Fahad Abduljabbar, Leonardo Simões, Fan Jiang, Neil Saran, Jean A. Ouellet, Catherine E. Ferland. European Spine Journal (2020)
  10. “How Common Is Back Pain and What Biopsychosocial Factors Are Associated With Back Pain in Patients With Adolescent Idiopathic Scoliosis?” Arnold Y. L. Wong, Dino Samartzis, Prudence W. H. Cheung, Jason Pui Yin Cheung. Clinical Orthopaedics and Related Research (2019)

First night in a brace? Stick with it! 

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For some young scoliosis patients, there is a particular watershed they have to face, one of those moments that separate the ‘before’ from the ‘after’. I am talking about the start of bracing therapy.
It isn’t always easy to get used to a brace, and difficult as it may seem wearing it during the day, that is nothing compared with what it is like trying to wear it at night.
When a patient goes to bed in a brace for the first time, it feels like there’s an unwelcome extra person in the bed with whom they are forced to share their mattress (whose softness and comfort they had never really appreciated, until now!).
The first night will be the hardest and the longest, but providing the patient manages to put up with the brace and resist the temptation to take it off, the second night will be easier, not least because they will be ready to catch up on the previous night’s missed sleep. After that, they will stop noticing the brace.
To begin with it’s quite normal to spend the night tossing and turning, trying to lie on your front, then your back, then on one side and then the other, before starting round again. The first minutes will drag and feel like hours and sleep will seem completely out of reach. 

On top of these initial difficulties, the unluckiest patients, meaning those who start their treatment in the summer, will also have to deal with heat and sweatiness, but these problems are not insurmountable.
Obviously, if the new brace wearer is going to have a sleepless night, it is only fair that the rest of the family endure one too! And if there seems to be absolutely no way to get some rest, it might be an idea to spend some time chatting or playing together to pass the time. If, in the dead of night, the patient still hasn’t managed to fall asleep, the temptation to take off the brace and fling it aside will be great, but they must stick with it, because at a certain point, the position that currently feels impossibly uncomfortable will gradually start to feel more sustainable. And, eventually, sleep will come, finally showing the patient the best position, for them, in which to sleep.

Adult Scoliosis: look after yourself!

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Adults with scoliosis are often convinced there is nothing more that can be done for their problem, partly because it has long been thought that scoliosis, in any case, doesn’t get any worse once you have finished growing. Unfortunately, now it has been shown not to be the case. We at ISICO, as well as monitoring patients through periodic checks, know that there is treatment available that may improve these patients’ conditions.

We frequently tell our patients that they will only be able to effectively manage their back and their scoliosis if they have a clear understanding of their condition and how to address it, which means: keeping fit, regularly doing appropriate exercises, and implementing strategies to avoid overstraining their back in everyday life. 

“Scoliosis in adults, treated or otherwise, may be one of three types: scoliosis that was discovered in adolescence, scoliosis that came to light in adulthood, and so-called de novo scoliosis. This latter form, typically seen in old age, is associated with often significant clinical symptoms, says our orthopaedic specialist, Dr Monia Lusini. For adolescent-onset scoliosis (which may have been discovered either in adolescence or in adulthood), the severity threshold beyond which the condition may worsen in adulthood is 30°, while curves greater than 50° are obviously much more likely to go on evolving, so much so that 50° is considered the cut-off point for surgery. Scoliosis worsens much more gradually in adulthood (by around 0.5-1 degree per year on average) often leading to the lateral and forward bending of the trunk typically seen in old age. The severity of de novo scoliosis, on the other hand, is generally mild to moderate, with the curve not normally exceeding the 30° threshold; nevertheless, this form can be associated with quite marked clinical symptoms.”

According to the data we have, mild curves (measuring less than 30°) are generally stable, whereas more severe scoliosis needs to be monitored, as a precautionary measure, through regular checks every 1-5 years.

And what happens if these checks show that the condition is worsening? “In that case, it may be useful to have a specific exercise programme drawn up by experienced and expert professionals in order to keep the situation stable” replies ISICO physiotherapist Alessandra Negrini. “Scoliosis is associated with several problems: a risk of back pain, aesthetic issues, progressive deformity, and problems with the internal organs (these are usually significant only in patients with curves greater than 70° and those with childhood-onset scoliosis)”.

This is why we at ISICO encourage our patients to do as much physical activity as they can, and to work out with their physiotherapist, a programme of specific exercises designed to strengthen the muscles that support the spine and combat the pain.

It has been scientifically proven (in two studies published by our group: Adult scoliosis can be reduced through specific SEAS exercises: a case report and Scoliosis-Specific exercises can reduce the progression of severe curves in adult idiopathic scoliosis exercises: a long-term cohort study) that appropriate and specific exercises tend to slow down or arrest the evolution of scoliosis.

Alongside physiotherapy, we at ISICO are currently trying out, in patients with scoliosis pain and ascertained progression of the condition, an elastic brace called Spinecor: when patients feel their back “giving way”, this device, even though it cannot be expected to lead to an improvement visible on X-rays, provides extra external support and can give them a few hours relief.

Two Isico patients among the final selection for Miss Italia

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We present two young women who hope to be chosen in the next Miss Italia contest finals as “the fairest of them all”. Lavinia and Cecilia, as well as being beautiful girls who have reached the final of Miss Italia, also have another thing in common: both have had to overcome many hurdles from a very young age, when they were diagnosed with curvature of the spine at our centre and had to embark on a lengthy course of bracing treatment. Looking at their smiling faces today, it is hard to imagine the struggle of those long years spent “braced up” and the determination they had to show in order to get where they are now. 

We spoke to both girls just after they won their place in the final. We were keen to know how Miss Lazio (Lavinia) and Miss Umbria (Cecilia) felt. 

Cecilia, 22, wore a brace for nine years, while Lavinia, 18, is still undergoing treatment that began five years ago when she was diagnosed with a 53° scoliosis curve. This has since been reduced to 35°. 

For both of them, their treatment, from the outset, involved wearing a brace for most of the day: “I had just turned 12 when it all began” Cecilia recalls. “I found it really hard to accept that I would have to spend years encased in plastic. Daily life was a real struggle and I well remember how upset I got every day, because I felt so awkward and stiff inside that kind of case. I remember the tight belts and the sound of the Velcro being pulled open when I took the brace off. I remember the sore patches and how anxious I was that I wouldn’t be loved or accepted in my new “shell” and wouldn’t receive all the attention, affection and hugs I had before. And yet, if it weren’t for my brace and all the self-correction exercises I did, I wouldn’t be the girl I am today”.

As for Lavinia, she turned to us in the hope of being able to avoid surgery for her scoliosis: “Of all the spine centres I consulted, Isico was the only one willing to try bracing treatment, despite the severity of my curve. I have to admit that those were difficult years for me, but I never stopped doing the things I love, like dancing, singing and going out with friends. Thanks to Isico and also to my own determination, I have made a considerable improvement. My curve has been reduced by almost 20°, and even though I don’t have a perfectly straight back, I have learned to love and accept my body the way it is.” 

Both girls firmly believe nothing can stop you from doing what you want and dream of doing. Obviously, you have to show loads of determination and perseverance, the two qualities that have enabled them to win places in the final of Miss Italia and, above all, get through years of treatment, during which they learned to treat their brace as that “friend” you love to hate, who has been by their side throughout their journey and helped them to become stronger people. “There will always be times when you don’t like yourself, with or without your brace, and if you happen to come across someone who doesn’t accept you because of it, you need to remember that it certainly isn’t your fault” Lavinia goes on. “This competition has shown me beyond doubt that my back hasn’t affected my appearance, and that it has actually made me more self-confident!”.

Because, in the end, a brace is also an ally. Both girls stress that “if you are patient, you will get results” and that a limitation, in this case in the form of a tricky condition like scoliosis, can turn out to be an unexpected opportunity: “We must all learn to love ourselves, have the courage to rise to the challenge, and fight prejudice without letting go of our dreams” Cecilia says. “I would like to be a voice encouraging acceptance of our limitations, because in an inclusive world we need to show ourselves the way we are and draw attention to the sacrifices that have made us strong. It is like we are all on a river in full flow and our brace is the boat that can help us make it to the open sea, where new lands and new horizons are just waiting to be explored”.  

This isn’t the first time we have had Miss Italia finalists; it is simply the first time we have had two together. “And it won’t be the last!” says Prof. Stefano Negrini, scientific director of Isico. “I am starting to wonder whether this phenomenon might be linked to the determination that people who face the difficulties in life manage to acquire in part thanks to the help of those around them. The effort you have to put in with a brace is a major investment in your future that gives fantastic results, also in an aesthetic sense. Could it perhaps be that these girls are keen for the world to see how they are not only because of the beauty Mother Nature has given them, but also because it represents the fruit of years of sacrifice and hard work? I’m not sure if we’ll ever get the answer to this question, but I like to think that there is something in this — that we are able to give our patients not just healthy and attractive backs, but also all the strength, pride and determination they need to fight for their goals. All hugely important values in life. So, well done Cecilia and Lavinia. Whatever the result of the competition, you are already winners!”.