Prof. Stefano Negrini, medical director of Isico explains how the examinations and treatments evolve during the Coronavirus epidemic.
Isico maintains its commitment and the trust that patients have given us by putting their health in our hands.
Dear Patients and Families,
The most difficult periods we face in life are the ones when we most need to be courageous and decisive, and look to the future.
We are living through a dramatic time, in which the health of every single one of us must take priority over every other consideration. And at a time like this, we, as a clinical institute, are acutely aware of our mission as doctors, therapists and specialists: a whole team working to support you, our patients. Because you have shown faith in us, by putting your health in our hands.
Over recent weeks, we have tried to keep all our outpatient clinics running, always in full compliance with the different regulations that have, progressively, been issued. Many of our patients in this period have had to go without examinations and treatments.
Scoliosis, however, is a condition that goes on evolving all the time. Therefore, even in the midst of the present coronavirus emergency, it is crucial to ensure that treatments are not interrupted.
With the dual aim of guaranteeing our patients continuity of care while at the same time taking steps to drastically decrease the risk of infection, on Monday 16 March, we introduced a radically new way of operating. This has been done in order to limit the movements of our staff members, to limit the clinical activities performed in our dozens of centres throughout Italy, and thus to reduce, as far as possible, the risk of the virus being spread during examinations and treatments. However, for us, limiting does not mean not being there for our patients: we are still providing examinations, prescriptions and treatments, but we are adapting our activity to the rigorous restrictions imposed by our country. In recent days we have been working harder than ever, racing to find new approaches and solutions, in order to continue repaying your faith in us.
Isico is now ready to activate a new method for providing examinations and treatments, in all situations in which this is feasible. This approach, called Telemedicine, is a hugely important opportunity for patients. The patients we see are ones whose condition requires or can require
a long and difficult course of treatment, and this is a way of preventing their hard work and sacrifices from going to waste. This new approach also reflects our determination to do all we can to reduce the burden on our National Health System, which is wrestling with the emergency, and also to do our bit for our country and for the many families facing unexpected economic hardship (we will be offering examinations and treatments at reduced rates). Obviously, these services will remain unchanged in terms of duration, timing and quality.
As one of our physiotherapists, Marta Tavernaro, wrote on the Facebook page aimed at our scoliosis patients: “I am not worried about this approach. We therapists already use it to follow young patients abroad, and for some time now our doctors have been studying an approach that might allow us to reach youngsters the world over. However, this emergency has hit everyone with catastrophic speed, and we have had to work day and night to come up with an adequate solution. Personally, in my 30-year career as a physiotherapist I have never experienced as many emotions, or had so many thoughts running round in my head as I have in recent days. Never before have I found it so hard to advise those who called me asking for advice, in this case on what they should do about their planned examinations and treatments. Now, however, with Isico Telemedicine, we have found the solution. And the fact that we have managed to do this is, believe me, yet another Isico miracle! At last, I have some peace of mind: in addition to being able, as a private citizen, to play my part in tackling this dreadful situation, I am now confident, as a professional, that I can go on giving our young patients the support they need without exposing them to the slightest risk”.
Should we have been looking for further confirmation of the value of our approach, in recent days the New England Journal of Medicine published an editorial entitled Virtually Perfect? Telemedicine for Covid-19, which remarks that”disasters and pandemics pose unique challenges to health care delivery. Though telehealth will not solve them all, it’s well suited for scenarios in which infrastructure remains intact and clinicians are available to see patients”.
Isico has equipped itself to be, until the emergency ends, a digital institute.
Together we can get through this difficult time.
Recent weeks have seen Italy, and the world, plunged into an emergency that is quite naturally leaving people feeling fearful and anxious. Fear is a normal and useful reaction, because it helps us to prevent, and therefore avoid, danger. Sometimes, however, these emotions become overwhelming and prevent us from seeing things in the right perspective: anxiety can become unmanageable and turn into panic. That is why, in these difficult times, we need to look after our mental health, and not just our physical health.
Isico has launched a psychological support service available not only to its patients and their families, but to anyone in Italy who needs this kind of help.
The service consists of two free Skype sessions aimed at providing users with the tools they need to manage the current situation. Dr Irene Ferrario is a psychologist who already works with our therapeutic team. “To combat the spread of the virus, our government has ordered us to stay at home, allowing us to go out only when strictly necessary” she says. “But ‘doing our bit’ isn’t always easy. Our social contacts have been drastically reduced and the future is suddenly filled with uncertainty: all this naturally makes us feel isolated, lonely and unhappy. The aim of these Skype interviews is to help patients find ways of managing the emotions generated by this situation, and also to provide them with practical advice that might enable them to deal with this enormous upheaval in our daily lives more calmly”.
Online interviews are an easy and convenient way of getting direct help from a professional without having to leave the home. What is more, this method of delivery has no detrimental impact on the usual ethical and care standards.
“The current scientific evidence also shows that psychological support and treatments provided online are just as effective as those provided face to face” Dr Ferrario adds. “In a review of the literature carried out in 2016, which considered data from 15 years of research, more than 100 randomized controlled trials showed online psychological and psychotherapeutic interventions to be effective in treating a very broad spectrum of medical and psychiatric conditions”.
The scientific knowledge and the clinical competence of Isico experts recognized by Lancet’s EClinical Medicin Journal
One of the major challenges faced by clinicians is related to Idiopathic Scoliosis prognosis and to decision-making concerning which would be the best treatment for every single patient.
Precisely on this topic, it has just been published by Isico in the journal EClinical Medicine the commentary Predicting scoliosis progression: a challenge for researchers and clinicians. The editor invited to comment on the study “A validated composite model to predict the risk of curve progression in adolescent idiopathic scoliosis”, following the review of the same conducted by Dr. Donzelli for the journal.
Idiopathic scoliosis has a multifactorial aetiology showing a wide range of different forms: anatomical (single or multiple curves and different localization), aesthetical (milder curves with visible changes and severe hiding perfectly), and prognostical (from highly to non-progressive).
Experts use some known clinical risk factors, the most important being residual growth: the more it is, the more the risk.
“It has been shown that ending growth below 30° allows preventing progression, disability and pain in adulthood – explains dr. Sabrina Donzelli, physiatrist in Isico and author of the review – the study of these colleagues developed a predictive model of the progression of scoliosis beyond 40 degrees, combining both clinical data and data from genetic tests. The idea of combining clinical and genetic factors is interesting, but the results show that genetic testing does not play as significant a role as clinical data. The test of the accuracy of the model showed 80% of specificity and 92% of sensitivity, thus meaning that the model is good in discriminating patients at high risk for progression to 40°. According to the model, there is a 20% risk of overtreating patients with less aggressive IS. Is this enough? It depends on the treatment used to avoid progression”.
The study therefore conducted is undoubtedly interesting, but the researchers showed a fundamentally surgical approach without any reference to the preventive role of the worsening and surgical risk shown by conservative treatments. Therefore we have been invited to process a comment to associate with the publication.
We would like to remind you that the SOSORT Guidelines recommend that ” for each patient, it is mandatory to choose the correct step of treatment, where the most efficacious is also the most demanding.” Expert clinicians should always choose the option they think is the most likely to reach the goals agreed with the patient but also the less invasive in the attempt to balance between undertreatment (that leads to little or no efficacy) and overtreatment.
“The introduction of a composite model, including genetic factors, is the novelty of this study, but some clinical questions remain open – continues dr Sabrina Donzelli – The type and quality of treatment applied, the compliance to treatment and the dosage of brace-wear have not been included in the model, although they are recognised as determinants of final results”.From a clinical point of view, the 40° threshold is too low for surgery indication and too high for the best achievable result from patients’ perspective. Surgery is indicated for curves exceeding 50°.
“A prognostic model should help clinicians in their choices after risks estimation – finalises dr Sabrina Donzelli – the currently developed composite prediction model for progression over 40° showed that the major predictor is Cobb degrees at start. The fact that Cobb at start is the major predictor, confirms the key-role played by screening and conservative care: exercises and bracing to prevent progression should be started at early stages of the deformity when it is early diagnosed“.
When discussing health care in disability, it is essential to talk about rehabilitation. Yet it is not always obvious. Precisely for this prof. Stefano Negrini, as director of the Group of Physical and Rehabilitation Medicine (Cochrane Rehabilitation), developed the comment “Prioritising people with disabilities implies furthering rehabilitation” to the editorial “Prioritising disability in universal health coverage“.
Both were published in the scientific journal Lancet.
“Unfortunately, it happens that even major magazines forget the central role of rehabilitation, which is why this comment had the aim of emphasising the theme. We fully agree with the Editors regarding the need to prioritise disability in universal health coverage – he commented Prof. Negrini – but we want to emphasise that for the World Health Organization (WHO) this implies also strengthening the rehabilitation health strategy.
Because of changing health and demographic trends, an increase in the number of people living with permanent disabilities, but also of people experiencing disabilities with the potential of recovery, has been observed.
1 billion people live with disabilities, while 2·4 billion people experience disabilities.
Rehabilitation serves both groups: by reducing the number of people transitioning from experiencing a disability to living with a disability, maximising the benefits of other health services, and reducing the overall costs“.
The comment concludes with these words: “WHO has included rehabilitation in the universal health coverage mandate together with other public health strategies including promotion, prevention, treatment, and palliative care… Paradoxically, the fundamental struggle for the rights of people living with disabilities somehow drove the attention to those with permanent and stable disabilities and social rehabilitation, without including those with evolving and changing conditions, who are the target groups of the rehabilitation health strategy. Rehabilitation strengthening advocated by WHO is in line with disability prioritisation emphasised in the Editorial, but will also reduce the burden of disability on the population and the costs of health services worldwide“.
Fighting scoliosis is a team effort. It is also a long, difficult and sometimes exhausting battle in which the patient, who is in the front line of course, is ably supported by various team members: a specialist doctor, a physiotherapist, an orthopaedic technician and, if necessary, a psychologist.
Nevertheless, the people best placed to support patients are the members of their own family. Parents, who directly experience the everyday problems faced by their child, can play an active and crucial role in ensuring that the treatment runs smoothly.
I would go so far as to say that their input is essential in order for the treatment even to begin.
A diagnosis of scoliosis always comes as a shock, and the course of action prescribed by the doctor is something no adolescent wants to hear. While they initially have little problem accepting the specific exercises they have to do, the prospect of wearing a brace is frightening. All they can think is that this is going to change everything, and they really don’t want that to happen!
In this situation, it is already clear that parents can play a crucial role. With their child probably completely overwrought, they need to inject a dose of rationality.
We, as a team of specialists, always try to address patients directly, striving, from the very outset, to involve them in every decision. We provide exhaustive explanations, as these are tools for interpreting and, above all, understanding the course that has been decided and prescribed.
However, on leaving our office or clinic, patients will inevitably take things out on their parents, and it will be up to them to find the best way of getting our words, and our message, across.
If you are reading this, you probably already appreciate that, in times of difficulty, we often find we have unexpected resources, and that, most of the time, it is possible to find a balance and follow doctor’s instructions properly.
As with all long undertakings, however, obstacles are always just around the corner, and you need to have the strength to stay “on track”.
Anger is a common and normal reaction in these patients, stemming from an understandable sense of injustice over the challenge they are facing.
In this circumstance, too, the whole team, but the parents primarily, must be ready to spring into action.
How can a parent best manage a child who is in difficulty with the treatment and gripped by a feeling of anger?
The first thing is to show empathy and understanding, remembering that things that are less important to us adults are not always viewed the same way by adolescents.
It is also important to remember that anger is a manifestation of distress, which can have various causes.
Parents must strive to be a point of reference and a channel through which their child can vent his or her feelings, in order to help him/her recognise and correctly express the anger he/she is feeling in the face of this difficult situation. The next step is to help the child to reason more clearly, reminding him/her of all the challenges he/she has thus far faced and overcome.
Parents must also be the first to believe in the course of treatment, and must continue to support it right through to its conclusion, having full confidence in the doctor and helping the child appreciate the importance of persevering. For these patients, this is perhaps the first time in their life that they have had to deal with a personal problem.
If they can learn to manage their anger and accept a compromise between what they want and what they can have (within the constraints of the treatment of course), then they will have learned, first hand, that, with a little patience and the support of those closest to you, difficult situations can always be overcome.
Note
This is one of the posts published in the Isico blog, www.scoliosi.org, a dedicated space where patients can ask questions and swap experiences, but it is also a place where those involved in treating scoliosis can take a more in-depth look at a series of topics and also engage with patients.
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Is there any particular sport, rather than others, that individuals with scoliosis should choose?
Two Isico studies have addressed this question, and in so doing they have dispelled the misconception that dance and swimming have a negative impact on scoliosis curves.
The studies in question will be presented in Melbourne, Australia, at the next SOSORT meeting, this year being held from April 27th to May 1st, 2020, during Spine Week.
As their titles show, these studies — Is swimming helpful or harmful in adolescents with idiopathic scoliosis? and The effect of dance on idiopathic scoliosis progression in adolescents — explore the relationship between scoliosis and two types of physical activity: swimming and dance.
Swimming and scoliosis
A few years ago, a previous Isico study, Swimming and spinal deformities: a cross-sectional study, exploded another myth.
It showed that swimming has no therapeutic benefit; in fact, the swimmers presented greater asymmetry and hyperkyphosis than the individuals who did not swim.
On this basis, it was concluded that swimming has a negative impact on posture and consequently is not an effective form of prevention.
The aim of our latest study on swimming was to verify the safety of recreational versus competitive swimming in adolescents with idiopathic scoliosis.
Of 780 patients fulfilling the inclusion criteria, 529 (68%, 420 females, age 12.3 ± 1.3, 16.0 ± 3.6 Cobb degrees) regularly performed sports activities. 63 (12%) were swimmers, and 15 of these were competitive swimmers.
“Compared with our 2013 study, in this latest research we did not consider healthy subjects” says Alessandra Negrini, Isico physiotherapist.
“We studied a sample of subjects with mild scoliosis (10-25°, mean Cobb angle 16°), not being treated with braces, and therefore only a clinical population. Our aim was to evaluate, on the basis of radiological findings at 12 months, the effect of swimming in individuals who already have a diagnosis of scoliosis and are going through a growth spurt (Risser-0-2, over 10 years of age). The effect of swimming was found to be comparable to that of other sports, and it was also similar in the competitive and the non-competitive swimmers. Age and hump size were the only factors found to influence the risk of worsening. These findings show that there is no reason to demonise swimming, be it recreational or competitive”.
In other words, they show that swimming is no better or worse than other sports.
Dance and scoliosis
Many spine specialists advise their idiopathic scoliosis (IS) patients to stop dancing on account of the risks (increased spinal mobility and flat back) that are potentially associated with the movements typically involved in this form of physical activity.
“The current literature reports a higher prevalence of scoliosis in subjects who practice dance than in their peers who do not dance” says Michele Romano, director of physiotherapy at Isico. ”In this research, we set out to assess the impact, in terms of the progression of idiopathic scoliosis, of dance compared with other sports in a group of adolescents (545 consecutive scoliosis patients)”.
The patients were divided into two groups: a Sport Activity group (SA – 461 participants), whose members performed any kind of sport, and a group of dancers, the Dance Activity group (DA – 84 patients).
“According to the results, the dancers showed a similar risk of progression as the patients performing other types of sport” Romano concluded. “The small sample size is one limit of the study; larger studies are needed in order to verify the effect of practising dance”.
Scoliosis: there is no particular sport that is more recommended than others
So, what conclusions can be drawn from the two studies? According to the two Isico specialists, at present there is no evidence to suggest that any particular sport should be preferred over others, or that there is any sport that people with scoliosis should avoid.
Given that neither swimming nor dance, two of the activities most often discouraged for those affected by scoliosis, showed negative effects when compared with other sports, it seems unlikely that other types of sport might have a negative impact.
“The scientific evidence tells us that sport is good for us, and while it may not constitute a treatment as such (unlike specific exercises), it may have a positive effect, supporting the improvements recorded by those with scoliosis” says Alessandra Negrini, “as already shown by my study Effect of sport activity added to full-time bracing in 785 Risser 0-2 adolescents with high degree idiopathic scoliosis (which won the Sosort Award 2019). We at Isico have always believed that it is crucial for our patients to carry on doing sport, especially since their treatment can already be an uphill battle for them. In short, being able to carry on doing sport, something many of these youngsters are passionate about, can make it easier for them to accept the treatment.»
What causes back pain? Well, having a back and two legs to begin with! That’s right! As humans, we have one particular body part that is always going to be more exposed than the others to the risk of discomfort and overloading. And that body part is the spine.
You have probably sometimes wondered why certain people who do heavy jobs and spend their entire lives “mistreating their spine” don’t even know what it means to have back pain.
It is well established that “good” or “bad” loading of the spine is a result of its conformation in the sagittal (lateral) plane, in other words, on the distribution of its curves.
Unfortunately, the lateral profile of the spine, meaning the particular way in which the spine’s natural curves, called lordosis and kyphosis, are distributed, does not depend on the will of the individual, but on a genetic predisposition to one pattern or another.
Basically, whether or not we are predisposed to back problems is a matter of luck.
So, what should we do? Simply resign ourselves to the fact that, morphologically speaking, we are among the less fortunate? Simply accept that we are prone to back pain and put up with it, since there’s nothing that can be done?
No, absolutely not! Because back pain, affecting our work, mood and social activities, can really condition our lives!
Things to know
– You have to take care of your back because, for better or worse, it’s yours and it’s the only one you’re ever going to have.
– Taking care of your back means keeping it fit and knowing how to use it properly. So, make sure you do regular physical activity to keep your spinal muscles in shape, but also your leg and arm muscles. What kind of activity? There’s no “best” kind of physical activity; the important thing is to choose something you enjoy and do it at least twice a week, or better still three times.
– Knowing how to use your back means making sure that you do not spend too long sitting down. You need to alternate sitting with spells of movement. Also learn to sit correctly, and if your work means you have to spend hours sitting at a desk, look at how to set everything (computer, seat, etc.) at the right height. Also, you need to think about how to correctly manage your body under stress, in other words when it is subjected to loads and also during physical effort.
– It is important to learn about the shape of your own spine and how forces are distributed over the body, and then to assess your particular limits and strengths. It can be helpful to do all this with the support of a specialist who can help to familiarise you with your own specific ergonomic and training needs.
What if I have scoliosis?
Even though there is still a lot to be discovered and learned in this field, we know that scoliosis, as it progresses, creates an abnormal alignment of the vertebrae, which is seen both in the frontal plane (as scoliotic curves) and in the sagittal plane (as changes in physiological lordosis and kyphosis).
Indeed, treatment of scoliosis aims to curb this progression and remodel the spine so that, by the time the individual finishes growing, it is as well aligned as possible.
According to scientific studies, if we can achieve good spinal balance in the sagittal plane (in particular, this means maintaining good lumbar lordosis), and if we can keep the scoliotic curves under 25-30°, the scoliosis outcome will not affect the proper functioning of the spine.
In such cases, the risk of back pain will be the same as that seen in people without scoliosis.
In the presence of more severe curves, it is necessary to be even more aware of the need to safeguard the spine. In the knowledge that it is a delicate and vulnerable part of the body, you must take good care of it and do physical activity to keep your back fit.
Isico will once again be in the front line at the International SOSORT meeting, this year being held from 27th to 29th April in Melbourne, Australia, during Spine Week (27th April to 1st May, 2020).
“All the abstracts we presented have been accepted” reports Dr Sabrina Donzelli, Isico physiatrist and author of the research paper that is in the running for the SOSORT Award. “This is an extremely gratifying result, considering the number of abstracts submitted, and it underlines the fact that we remain firmly committed to research. We are also delighted and honoured to feature, once again in the list of the “top ten” studies presented”.
In short, Isico has, once again, received full marks from the global spine rehabilitation community. Let us not forget that last year the Isico study entitled Effect of sport activity added to full-time bracing in 785 Risser 0-2 adolescents with high degree idiopathic scoliosis, which also featured among the top ten “nominations”, went on to win the SOSORT Award.
Here, then, are the studies that our specialists will be presenting this year in Melbourne: Is swimming helpful or harmful in adolescents with idiopathic scoliosis (Dr Alessandra Negrini, physiotherapist); The effect of dance performance on idiopathic scoliosis progression in adolescents (Dr Michele Romano, physiotherapist), ISYQOL, a Rasch-consistent tool for quality of life evaluation in scoliosis patients during adulthood: comparison with the gold standard (Dr Fabio Zaina, physiatrist).
Finally, Dr Sabrina Donzelli will be giving two lectures. The first one, which is entitled Is clinical measurement of the hump helpful for X-ray prescription and a good predictor of the curve? Results from ageometrical study from a large prospective cohort, was also given at the last SRS meeting, while the second is the one that has been shortlisted for the SOSORT Award: Final results of brace treatment of adolescents with idiopathic scoliosis prediction: 30 days out-of-brace is better than in-brace X-ray.