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ISYQOL: the international version

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With a pathology such as scoliosis that requires demanding treatment, at Isico we have known for years how fundamental it is to establish a relationship of trust with the patient and to have him adhere to the therapy, ensuring the possibility of a good quality of life in a brace. For this reason, years ago, a questionnaire was developed where our patients could express their assessment of the impact of wearing a brace on their daily lives.
From these questionnaires, the next step was to develop an online model made available to everyone, where, in ten questions, the patient himself evaluates his own well-being with regard to spinal pathologies (kyphosis, scoliosis, or other).
This is how the ISYQOL (Italian Spine Youth Quality of Life) questionnaire was born, which is based on the concerns expressed by patients and has proven to be particularly appropriate in patients with adolescent idiopathic scoliosis (AIS) who have not been treated surgically. 

In recent years, several studies have been published with adaptations and validations of the original Italian version in different languages. 
The latest revision is an international version published recently in the European Journal of Physical and Rehabilitation Medicine, a “Cross-cultural Validation of the Questionnaire: The ISYQOL International”.
The ISYQOL Italian version was translated into six languages using the forward-backwards procedure. The conceptual equivalence of the items’ content was verified, and any inconsistency was resolved by consensus. Finally, patients were asked to complete the ISYQOL before their consultation or treatment session without external help and without being influenced by their parents.
This work aims to assess the ability of ISYQOL to provide an accurate, cross-culturally equivalent measure of the quality of life for young people with idiopathic scoliosis from seven different cultures and languages (i.e. Canadian English, Canadian French, Greek, Italian, Polish, Spanish, and Turkish).
After this last revision, the questionnaire is now available in many languages. In addition to Italian and English, we have Chinese, Polish, Korean, Arabic, Persian, French, Spanish, and Greek versions.

A brace? Nothing to fear!

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Unfortunately, scoliosis has to be treated in adolescence, which is already a very tricky and delicate phase in which youngsters often feel torn between wanting to be independent and wanting to fit in and belong.
We have all been through it and know how difficult this period of growing up can be. It’s not easy being the parent of an adolescent either. Sometimes we struggle to understand our children’s problems as they seem so far removed from our own. We might also struggle because we would like to be able to solve all their problems for them. This particular challenge, though, is one they need to overcome by themselves. What we, as adults, can do is be supportive, helping them to think things through and analyse situations, being careful never to minimise their problems or difficulties. 
For adolescents, it is very important to feel part of a group, and so anything that makes them feel “different” is scary. Years ago, youngsters worried about wearing braces on their teeth for this very reason, whereas nowadays so many have orthodontic treatment that no one bats an eye.   

Friendships are also important for teenagers, who will open up to one another, sharing their problems, feelings, insecurities and worries. True friends are the ones who support their brace-wearing peer (helping them to accept the device as a part of their daily life), and certainly not those who mock or tease another person for a health problem.

Also, as we all know, whenever we have what we consider to be a defect or flaw, we tend to see it as a far bigger problem than it really is. If, for example, we have a pimple on our face, however tiny, we become convinced that it’s the only thing everyone else notices about us!
In the same way, for some patients, a brace peeping out from under a t-shirt is an absolute disaster!
Compared with the braces of the past, today’s ones are made to be almost invisible under a vest or shirt. This is partly thanks to the orthopaedic technician’s skill and expertise and the specialist doctor who chooses the model. 

Over the years, we have seen that our patients can do seemingly impossible things with their brace on. Just take a look at the photos and videos published on our website, www.concorsetto.it, where you can find patients offering tips on how to conceal a brace under clothes, and others who do dance shows, go to the mountains or seaside, or do sport in their brace (even athletics, skiing and gymnastics).
Seeing other brace-wearing youngsters who have accepted the need to treat their condition and managed to deal with the situation in a positive way helps to normalise the whole experience!  Indeed, the key, basically, is to try and focus not on the inconvenience of a brace, but rather on the fact that spinal disorders have to be treated in order to prevent problems from arising in adulthood. It’s far better to pour your energies into fighting your scoliosis, rather than your brace. While you can’t change your brace, you can change your perception of it and how you approach it! In some cases, a patient might find it useful to talk to an expert, such as a psychologist, in order to overcome any difficulties in accepting the treatment.

Recently, one young patient even sent us a photo showing the rock band Måneskin wearing corsets, which are not so different, in the end, from braces! Who knows, this could be the start of a new trend!
The last thing to remember is to take things step by step. Start by telling just a few close friends that you have started wearing a brace. That way, later on, with their help perhaps, you should find it easier to talk about it with others. Also, give yourself time to get used to it, as it is a whole new thing for you. In this way, slowly but surely, you will soon find you are getting on OK with your initially unwelcome new “friend”!

Can leg length discrepancy cause or worsen scoliosis?

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Leg length discrepancy (LLD) is a common orthopaedic condition among children and adults, with a prevalence of 90% in the general population and 40% among athletes. LLD occurs when the lower limbs are of unequal length; the discrepancy is typically less than 10 mm and asymptomatic.
Individuals easily compensate for it through small adaptations of which they are very often unaware (such as bending or extending one leg more than the other). Some children are born with LLD; in other cases, the condition is acquired due to causes such as tumours, radiation, infections or injuries.

LLD can be classified as functional or structural depending on the aetiology, i.e., the underlying cause.

Functional LLD refers to an apparent asymmetry, in the absence of real shortening or elongation of the osseous components of the lower limb. It is typically a result of pelvic obliquity related to adaptive soft-tissue shortening, joint or muscle contractures, ligamentous laxity, or axial misalignment. As the pelvis rotates, the legs are pulled into apparent different lengths.

Structural LLD, on the other hand, is a primary disorder causing actual physical shortening or lengthening of a limb, with the osseous change occurring between the ilium and the foot. The causes of shortening are more common than those of lengthening, and they may be congenital or acquired: shortening is most often due to fractures along the physis (Salter-Harris fractures), which can stop bone growth and lead to LLD.

LLD can be associated with several musculoskeletal disorders, including scoliosis and resultant degenerative spinal changes. However, the degree of LLD required to cause such disorders is still debated. LLD has been shown to cause pelvic obliquity in the frontal plane. In order to maintain shoulder balance and compensate for the pelvic obliquity, the condition that most frequently occurs is lumbar scoliosis with convexity directed towards the shorter limb. Scoliosis caused by LLD is not true scoliosis.

Should scoliosis due to LLD be treated?

This type of scoliosis, termed functional scoliosis, is non-progressive and involves a structurally normal spine with an apparent lateral curvature: it is evident in the erect position, but reduced when the subject is seated, supine or prone. The greater the degree of LLD, the more apparent the functional scoliosis may be. 

This type of scoliosis regresses fully or partially when its cause (i.e., the LLD) is removed. 

A simple remedy is to use shoe lifts, which may be internal or external depending on the degree of LLD.

If, after clinical evaluation, the functional scoliosis is found to be reducible (in part or totally) with a shoe lift, this solution will also be useful for reducing the overloading of the spinal joints and for reducing the structural and disc changes that occur over the years in the presence of scoliosis due to LLD (particularly when the difference between the two limbs is greater than 9 mm), as various studies have shown.

In a patient with structural and functional (LDD-related) scoliosis, it is appropriate to carry out tests to evaluate the usefulness or otherwise of a shoe lift. A shoe lift does not treat true scoliosis and the decision on whether or not to use it is a complex and individual one that should be made by the specialist.

Applebaum A, Nessim A, Cho W. Overview and spinal implications of leg length discrepancy: narrative review.  Clin Orthop Surg. 2021;13(2):127-34.

Giles LG, Taylor JR. Lumbar spine structural changes associated with leg length inequality. Spine (Phila Pa 1976). 1982;7(2):159-62.

Adams MA, Hutton WC. The effect of posture on the role of the apophyseal joints in resisting intervertebral compressive forces. J Bone Joint Surg Br. 1980;62(3):358-62. 

Murray KJ, Azari MF. Leg length discrepancy and osteoarthritis in the knee, hip and lumbar spine. J Can Chiropr Assoc. 2015;59(3):226-37.

Are bracing and exercises really still the only way to “solve” the problem?

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This is a question many parents ask us when scoliosis is diagnosed. Perhaps their child has a particularly tricky curve, or maybe they themselves can remember dealing with the same condition when they were young. It is the same question we were recently asked by the mother of a five-year-old girl who, at this tender age, already has to reckon with a challenging treatment, “trapped” in a brace.

 Unfortunately, despite huge strides made in the formulation of less invasive and more effective braces (such as the Sforzesco type that we at ISICO, have long used as a valid substitute for plaster casts), bracing and specific exercises remain the only conservative treatments available for scoliosis.  

No parent wants their child to suffer the same negative experiences that they themselves remember, and it is perfectly understandable to be concerned about the possibility of them living the “nightmares” we did, and to want to protect them as far as possible. On the other hand, if this is something you have gone through yourself, you will actually be ideally placed to really understand all the difficulties your child is likely to face, and to help them find the best way to cope. It is not being complaining to ask whether other options exist and whether your child really does have to wear that uncomfortable piece of plastic — these are, after all, questions that any parent would ask.

 So, to return to the question, are there any other effective and less difficult treatments? Unfortunately, as explained in a recent study, manipulation and osteopathy, like all manual treatments, have not yet been shown to be effective (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9833903/).

Given the questions we so often get asked, we feel it is essential to properly explain the reason for certain aspects of the treatment, such as the need to ensure that brace-off hours are consecutive, the importance of performing specific exercises, and the duration and dosing of the treatment.

When deciding how long the treatment will last and how aggressive it needs to be in terms of the dose (i.e., number of brace-on hours per day), the factor we consider is the potential risk of the condition worsening. This risk is assessed based on the extent of the scoliotic curve and how much growing the patient still has to do (residual growth). Scoliosis worsens with growth, therefore the earlier it arises, the more likely it is to get worse, especially during growth spurts, when the youngster gains height rapidly (these usually happen at 6/7 years of age and in puberty).

Based on this information, the treatment can be adjusted, reducing or increasing the dosage according to the period of risk.

It also follows that the earlier scoliosis arises, the longer the treatment will need to be, given that bone growth has to be complete to reach a stable situation. Then there is the question of the “brace-on” hours. It has been demonstrated that after putting on a brace, it takes at least two hours for the spine to achieve the desired correction. 
This means that, when the brace is repeatedly taken off and put back on, we have to consider, and count, not only the brace-off hours, but also the hours needed for the spine to return to its correct position inside the brace. In the same way, every time the brace is removed the back tends to spring back to its starting condition (rather like a spring that has been pulled and then reverts to its original shape).

Then, the more frequently the brace is taken off to give the patient a break, the less effective the treatment will be compared with wearing it for the same number of hours but with fewer and longer breaks. For this reason, it is essential to try and establish and maintain a regular brace-wearing schedule.

We know that bracing treatment is very challenging and also that managing the brace-off hours can be difficult, especially during the summer. For this reason, we advise families, as far as possible, to choose somewhere cooler for their holidays, and also to talk to their specialist to see whether, on some days during the summer, the brace-on hours can be reduced or the brace-off time can be split into two blocks. Obviously, these decisions have to be taken on a case-by-case basis.

As for the specific exercises for scoliosis, these are designed to help support the back when the brace is not being worn, and also to prevent loss of muscle tone (otherwise an inevitable consequence of bracing). In the case of very young children (like the little girl whose mother prompted us to write this post), we recommend lots of sport to keep the muscles in shape, because children aged 4 to 6 years often don’t yet have the concentration necessary to be able to cope with exercise sessions.

Finally, in answer to the question, yes, at present, bracing and exercises are the only conservative therapy options that have been shown to work. This kind of treatment is certainly difficult and demanding, but we have to remember that it aims to help our children reach adulthood with healthy backs, and fortunately, we do at least have these “instruments” to offer them. 

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!”