ISYQOL: Polish adaptation study published

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

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

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

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

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

Simona’s story

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

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

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

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

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

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

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

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

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

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

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

Scoliosis? It can be treated in adulthood, too

The young scoliosis patients who come to us for conservative treatment often have parents (one or both) affected by scoliosis. Some of these parents received exercise-based and/or bracing treatment in adolescence; some never got any treatment at all, while others even discovered the condition late on, after reaching adulthood. Often, they are completely convinced that there is nothing more to be done for their scoliosis! But nothing could be further from the truth!

For these adults, the first obstacle to overcome is precisely this unwillingness to do something about their condition: some are reluctant to face up to a problem that has caused them suffering in the past, some believe there are no solutions, and others give priority, above all, to their child’s care needs.

These attitudes are entirely understandable, but unfortunately burying one’s head in the sand simply has the effect of increasing the risks as time goes by. It must be understood that if scoliosis is getting worse, this is not a momentary problem — it is a situation that could lead to more marked symptoms in the future, such as pain and back problems.

When scoliosis worsens, the spine may start to bend laterally following the curve direction, creating a so-called Tower of Pisa effect. What is more, this can be accompanied by forward bending of the upper body. As well as having negative aesthetic consequences, all this can seriously impair the individual’s quality of life.  

Specific self-correction exercises are an excellent way of dealing with a worsening situation like this. It is worth remembering that a worsening of scoliosis in adulthood is not necessarily accompanied by pain; however, if pain does occur, the exercises should target both problems. We often come across adults who say they realised there was “something wrong” when looking at themselves in the mirror.
There are a number of possible signs to look out for: asymmetry of the hips, skirts or trousers that don’t hang right, asymmetry of the shoulders, a more pronounced hump, the perception of having lost a few centimetres in height. All these are red flags that should prompt you to seek the advice of a spine specialist.

Because, when it comes to scoliosis, it is definitely best to act in a timely fashion, taking steps to find out whether something is changing or if everything is stable.

Various studies have shown that scoliosis measuring under 30° at the end of growth normally remains stable over time, even during adulthood, while curves greater than 50° almost always tend to worsen [1]. Obviously, there are exceptions to both these “rules”. 

We do not know for sure exactly what happens in the case of curves measuring between 30° and 50°; we only know that, in general, the risk of deterioration increases as curves become more prominent.

In adult cases, it is important to have the medical and radiographic check-ups prescribed by the doctor. At ISICO we follow protocols that are based mainly on the severity of the curve, recommending the following:

– for curves with a Cobb angle of less than 20 degrees that have been treated during adolescence, a medical check-up every 4-5 years;

– for curves with a Cobb angle of between 20 and 29 degrees, a medical check-up every 2-3 years;

– for curves with a Cobb angle of between 30 and 44 degrees, a medical check-up every 1-2 years;

– for curves with a Cobb angle greater than 45 degrees, an annual check-up.

These recommendations aside, the doctor can give different indications, based other factors, such as the patient’s age and how stable the curve has proved to be in the past.

As for X-rays, the antero-posterior view is recommended if there has been a worsening of the hump.

When spine specialists measure X-rays of adult patients with scoliosis, they know that what they are seeing represents the sum of two components: the structural deformity of the spine and the patient’s posture.

In adults, there is little that can be done to alter the bone component (structural deformity), given that the individual has finished growing. However, we can certainly intervene on the postural part, teaching our patients how to support the weight of their trunk under the effect of gravity.

One of the main aims of the specific exercises we prescribe at ISICO is to help patients learn the technique of ACTIVE SELF-CORRECTION. This refers to a series of movements that patients are taught as a means of realigning their spine as much as possible, so as to counteract its tendency to collapse on the side of the curve; they are also encouraged to try and maintain much of this correction in their everyday activities. In this way, patients have a means of reducing, albeit temporarily, their curve by a few degrees, and possibly also the imbalance of the trunk that it causes.

In short, given the risk of a slow deterioration of the condition, it is important to have regular check-ups, for preventive purposes [2].

Finally, one last crucial piece of advice.  Always make sure you get regular physical exercise, appropriate for your age and physical condition. There is no one sport or activity that is better than  others: the choice depends entirely on the individual patient’s situation.  

If, in addition to doing sport and physical exercise, you also need to do targeted exercises for the spine, contact a spine specialist, who will draw up an ad hoc exercise plan for you.

[1 ] 2016 SOSORT guidelines: orthopaedic and rehabilitation treatment of idiopathic scoliosis during growth. Negrini et al. Scoliosis Spinal Disord 2018  

[2]  Natural history of progressive adult scoliosis. Marty-Poumarat et al. Spine 2007

eSosort2021: ISICO awarded for the third time in a row

And the winner is: Isico! For the third consecutive year, our Institute has been awarded the highest international recognition for those involved in the rehabilitation treatment of vertebral pathologies. On Saturday, May 1st, on the occasion of the annual SOSORT conference, this year in online mode due to the pandemic, our studio “Efficacy of bracing in infantile scoliosis. A 5.5 years prospective cohort shows that idiopathic respond better than secondary” was awarded the SOSORT Award. 

It is not the first time, because only in the last two years Isico has won the coveted international recognition for the best research by SOSORT, to which is added, in 2019, the award won as co-authors of a research study in collaboration with the University of Hong Kong. A truly unique continuity.
“An award that once again certifies the high quality achieved by the scientific research carried out in our Institute at an international level – explains Prof. Stefano Negrini, scientific director of Isico and first author of the awarded research (the other authors are Dr Sabrina Donzelli, Dr Greta Jurenaite, Dr Francesco Negrini and Dr Fabio Zaina) – through this research the main goal was we have set ourselves the goal to check the results in the medium term of bracing of infantile scoliosis, comparing the two groups: idiopathic and secondary scoliosis.”
According to Mehta results, casting is considered the gold standard conservative treatment for infantile scoliosis, still casting requires repeated general anaesthesia, and recently doubts have been raised that this could cause potential brain damages in the long term. 

“In our Institute, we have been using bracing for a long time to reduce invasivity for the patient – says Prof. Negrini – Moreover, the results of the Sforzesco brace have shown to be similar to casting in adolescents. Thanks to the clinical and research experience gained over the years, we have developed a retrospective study in a prospective cohort. We have been using braces since 2004 and have been able to present the largest case history on braces to date (34 patients), with an average follow-up of 5 years, documenting excellent results in idiopathic scoliosis (success in 50% of cases – only one failure), while in those secondary to other pathologies it is possible to delay surgery over time even in the face of more frequent failures (surgery inevitable in 20% of cases)”.
We remind you that infantile scoliosis is very rare, about 1 case in 10,000 children, and for this reason, it must be treated by very expert and dedicated specialized clinics with specialists who  have been managing spine deformity for long and have a rich clinical experience
“In this context, we are also the only Italian structure that is participating in an international multicentre study, which involves clinical centres in 40 countries around the world, to verify the effectiveness of braces compared to casts – concludes prof. Negrini – During the two-year duration of the project, we will bring about 5 cases treated at our Institute for research purposes. Isico has several years of experience in the use of braces, our participation will not include the application of casts, but our results in bracing will be compared with those of other centres that apply casts”.

Online congress in Brazil for the month of scoliosis

On behalf of the “Green June 2021 – Organisation Committee” from the Brazilian Scoliosis Treatment Society (Sociedade Brasileira de Tratamento da Escoliose – SBTE), the 1st online Brazilian Scoliosis Congress will take place in June from 25th to 27th.
“This initiative is unprecedented in Brazil and tries to provide quality information – comments Isis Navarro, physiotherapist cooperating with the organizer- in this way, we want to promote awareness of scoliosis for patients, families, students and professionals”.
Three Isico scoliosis experts have been included among the international speakers in the online event: Dr Sabrina Donzelli will give a presentation focusing on the current evidence in the conservative treatment of scoliosis; Michele Romano, Isico physiotherapy director, will give a lecture on the SEAS approach, while Alessandra Negrini, an Isico physiotherapist as well, will talk about “Sports and Scoliosis”.
For more information and for registration please follow this link 

Dress green with us in June!

As every year, Isico dresses in green throughout June with a particular initiative. During the four weeks of the month, we will launch mini videos with the “Best” of each edition of the Concorsetto, the Isico competition dedicated to those who wear the corset to offer a series of testimonials from those who live with the corset in their daily lives.
Recall that National Scoliosis Awareness Month occurs every June to underline the importance of early diagnosis and public awareness of scoliosis and its prevalence within the community.
Initialised more than a decade ago by the Scoliosis Research Society, the oldest scientific society dealing with scoliosis, founded in 1966, this campaign aims to raise public awareness of scoliosis and related spinal deformities through educational campaigns and the defence of local activities and community events during June and throughout the year.
There is a green ribbon to characterise the campaign throughout the month and a day for this 2021 edition, June 26th, to tell the own story, a personal one or that of a friend or a family member, to spread the awareness of the existence of this pathology.
Everyone can participate in the campaign, just like us at Isico: sharing the green ribbon on the social profile, posting participation or even only a photo or a story are all ways to make this pathology known. Or follow our Social profiles and share our mini-videos “The Best of Concorsetto”, with the hashtag #scoliosisawarenessmonth.
Knowing about scoliosis is already a first important step towards its recognition; the sooner this happens, the better it is to be able to intervene with adequate therapy.
Mark the month of June in green and leave your green mark on June 26th!

Here you have the full video The best of Concorsetto

Daytime versus night-time bracing: what to do when scientific evidence is of no help?

When we sit down in front of a doctor, we often expect him or her to have the solution to all our problems, but of course this is not the case. Unfortunately, that isn’t how evidence-based medicine (EBM) works!

EBM is defined as the explicit, conscientious and judicious use of the best current scientific evidence in decision making regarding the treatment of an individual patient or population. Indeed, the term “evidence” refers not to that which is “evident”, but rather to what has been discovered through specific research.

Evidence-based clinical practice is built on 3 key elements: 

– the best research evidence;

– the clinical experience of the treating physician;

– the patient’s values and expectations.

In other words, optimal clinical decision-making is based on knowledge of the best available scientific evidence, which must be combined with the values and preferences of the patient, who is involved directly in the process of choosing his or her treatment. 

But scientific evidence cannot answer all the questions that crop up in medicine. In the field of scoliosis treatment, for example, there are no studies showing that brace wearing is more effective during the day than at night. 

So, what are doctors meant to do when they are faced with situations like this? In the absence of available scientific evidence, the decision has to be based on the other two foundation stones of clinical practice (the doctor’s personal experience and the patient’s values), so as to achieve the best possible outcome. 

As far as bracing is concerned, there is an important study “Adolescent Idiopathic Scoliosis Bracing Success Is Influenced by Time in Brace: Comparative Effectiveness Analysis of BrAIST and ISICO Cohorts” which shows that the outcome, in terms of curve correction, depends on the number of hours the brace is worn: the longer it is worn the better the result will be.
On the basis of this knowledge, and also with the aim of increasing our patients’ compliance with the treatment, we at ISICO have decided that patients should always wear their brace at night, and enjoy their brace-off hours (as prescribed by their doctor) during the daytime.
After all, if patients sleep without their brace on, this means they lose 7-8 hours of correction every 24 hours. What is more, using brace-off hours during the daytime makes it easier for youngsters to take part in the daily activities they enjoy (sports, going out with friends, and so on), and this increases not only the level of compliance with the treatment, but also their quality of life.
Finally, we know that our spine does not remain passive during sleep; on the contrary, when we are in bed, swelling of the intervertebral discs (shock-absorbing “sponges” situated between our vertebrae) causes lengthening and tension of this entire structure, which is so important in growth.
This is one of the reasons why ISICO (and pretty much all practitioners worldwide) now recommend that, when the time comes to do so, bracing hours should be reduced during the daytime, until the point is finally reached when patients, in the last months of their treatment, are wearing their brace only at night. This, then, is an example of how the clinical experience of a specialist team and the particular needs of patients can together serve as the basis for making sound therapeutic choices in the absence of hard scientific evidence.

Bracing adults with scoliosis: a new published study

The research paper “Bracing adults with chronic low back pain secondary to severe scoliosis: six months results of a prospective pilot study”, has just been published by the European Spine Journal.
It is one of the few articles published in the literature on the use of braces for adults affected by scoliosis. Although scoliosis has been estimated to affect up to 68% of the population over 60, there is scant literature about conservative treatment for adult scoliosis.
While during growth, the main concern is aesthetic, with a quite good quality of life and pain is quite unusual, backache characterizes adult scoliotic patients.

“For our research, we took into account twenty adults with chronic low back pain (cLBP) secondary to Idiopathic Scoliosis (IS) – explains dr Fabio Zaina, a specialized physiatrist of Isico and the author of the publication – Patients were evaluated at baseline immediately before starting with the brace and after six months. We have used a new brace, called “Peak”, designed to alleviate pain for adult patients with chronic pain secondary to scoliosis.”

The objective of the study was to test the efficacy of a prefabricated brace in reducing pain in adult scoliosis patients because the quality of life and pain are the main reason for seeking treatment. 
Patients, especially women with severe scoliosis, wore the brace for a few hours, from 2 to 4, a day: “This study has some shortcomings: including a limited number of females only patients, as well as not having a control group. It would have been interesting to compare this group with those who refused to wear the brace or to another similar group that only did exercises – ends dr Zaina – from the data collected, we found an initial impact on pain reduction, none instead on the quality of life according to the questionnaires filled in by patients. Considering that the extension of follow-up produced improved results, our recommendation could be to pursue the part-time brace-wearing permanently. Starting with such a short period of brace wear (2–4 h per day) would also allow the expert clinicians to increase the dosage in case of need”.

eSosort2021: Isico competes for the AWARD

Isico, too will be present with several presentations at the annual international conference Sosort, online from April 29th to May 1st.
A presence, albeit virtual, characterized by the possibility of competing again for the SOSORT Award. We recall that Isico has been awarded already in the last two years the prestigious international recognition given by SOSORT for the best research, to which is added, in 2019, the Award won as co-authors of a research study in collaboration with the University of Hong Kong.

“In this online edition, our study Efficacy of bracing in infantile scoliosis. A 4-years prospective cohort shows that idiopathic respond better than secondary scoliosis will compete for the Award along with six other studies – explains Prof Stefano Negrini, scientific director of Isico and first author of the research – an important result that recognizes the high quality of the research we are performing in Isico. Also, the study Adults with idiopathic scoliosis: progression over 5 Cobb degrees is predicted by menopause and metabolic bone disease, which sees as first author Dr Sabrina Donzelli (who won the Award in 2020) was nominated among the 7 best research studies: Dr. Donzelli will hold the presentation but will not compete for the Award this year.”
In addition, another study, Increasing Brace Comfort, Durability and Sagittal Balance through Semi-rigid Pelvis Material does not change Short-Term Very-Rigid Sforzesco Brace Results, is among those selected for the Podium presentation and will be presented during the event by Dr Francesco Negrini, an Isico physiatrist.

Isico also distinguished itself for the works accepted as Posters, available to subscribers to the event in an on-demand session, and they are three: Can the tilt-differences of limiting vertebrae be a prognostic factor for the worsening of the scoliosis curves treated with specific exercises? A pilot study using a series of matched patients, edited by our director of physiotherapy, Michele Romano, Reducing the pelvis constriction changes the sagittal plane in the brace. A retrospective case-control study of 37 free-pelvis vs 336 classical consecutive very-rigid Sforzesco braces and The modular MI-brace is as effective as the classical custom-made Sforzesco brace. A matched case-control study of 120 consecutive high-degree female AIS, both from Prof Stefano Negrini.

This year’s virtual meeting will begin with synchronous (live) presentations on Thursday, April 29th and Friday, April 30th, from 9 am to 11 am Eastern Time, and on Saturday, May 1st, from 9 am to 1 pm Eastern Time.

All the presentations will be recorded and be made available on-demand for a duration of 1 year on the SOSORT conference website for registered participants. For more information and registration, visit the event website https://esosort21.sosort.org

Scoliosis: why appearance matters

To treat scoliosis solely on the basis of radiological images, assessing only the patient’s skeletal conditions, would be a huge mistake.

The evolution of scoliosis typically leads to spinal changes in the three planes of space, and it therefore causes a modification of the ribcage. Indeed, as scoliosis progresses, it also changes the appearance of the torso, and this, depending on the severity of the curve, can impact more or less markedly the patient’s appearance.
According to the international guidelines on the conservative approach to scoliosis drawn up by Sosort, improving the patient’s appearance is the second most important goal of treatment.
If the condition is not adequately treated, or the treatment is ineffective, the above-mentioned changes will become more and more marked, even to the point of severely impairing the patient’s quality of life.

The way we see our body is highly subjective. People with asymmetries of the hips or shoulder blades, or a hump, react differently to the problem, in the sense that a defect that one person hardly thinks about, may be quite unbearable to another.
“In treating scoliosis, we must be careful not to overlook this question of aesthetics, precisely because we can never assume that our patients see things the same way as we do: any asymmetry, be it major or minor, can have a considerable psychological impact says dr Irene Ferrario, Isico Psychologist – It is also important to remember that these changes occur in a period – adolescence – that is already full of challenges, and can sometimes see youngsters struggling to build, and accept, their own body image”.

For all these reasons, addressing patients’ aesthetic concerns should not be seen as indulging them; indeed, correcting aesthetic defects is not of secondary importance compared with correcting the curve: it is a therapeutic necessity. When a patient has, for example, one flank straighter than the other, a misaligned shoulder blade, or a hump that alters the line of the upper body, these changes may be perceived as more or less visible, depending both on the individual’s relationship with his/her body, and on his/her own (entirely subjective) aesthetic parameters. Over time, however, if the disease progresses, these changes can become objectively visible and psychologically damaging.
Obviously, we are referring here to the most severe cases, but these remarks nevertheless serve to illustrate that a scoliosis treatment plan cannot exclude the issue of aesthetics. Addressing this aspect is a necessary part of the treatment.

In short, good conservative practice absolutely must take into account aesthetic considerations. Regardless of whether or not the patient highlights this aspect, considering it to be of primary importance, the physician should in any case include it as a key objective of the treatment, which may contribute to its success.
In our care pathway, it is often the parents who first “raise the alarm”, alerting the therapeutic team to these concerns. This is because they are often the first to notice changes in the child’s body, especially if he or she is still too young to have a real awareness of his/her body and body shape.
Sometimes, these “alarm bells” are justified, and sometimes not, given that mild bodily asymmetries are normal, and do not always indicate an underlying problem. Purely aesthetic concerns, especially when raised by our young patients, should never be dismissed. Identifying and acknowledging a patient’s experiences and feelings is crucial to their all-round care. 

“Another aspect that should be underlined is brace wearing, as this treatment (when required) also has aesthetic implications –explains Lorenza Vallini, Isico PT – Many patients worry that their brace can be seen under their clothing, and addressing this concern is an important part of increasing the acceptability of the treatment: fitting patients with increasingly thin braces, moulded to their shape and therefore “almost invisible” to the onlooker, has proved to be a key factor in reducing and containing the deformity. Moreover, a good brace produces a truly remarkable aesthetic correction, not only immediately but also in the long term“.
Indeed, the brace wearer is rewarded with an improvement that lasts into adulthood. But arguments based on the long-term advantages are often lost on youngsters, and therefore an “invisible” brace is still crucial.
The main objective of the treatment will always be a well-balanced and harmonious body, which is as symmetrical as possible. After all, no one is perfect, not even Botticelli’s Venus. Indeed, her imperfections are part of her beauty!