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Full-time treatment: no stress!

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We talk of “full-time treatment” whenever a brace needs to be worn round (or almost round) the clock, i.e., for 23 or 24 hours a day.  When patients with scoliosis are treated using a brace, it is not unusual to have to wear the device full time in order to effectively address severe curves (those measuring more than 40 Cobb degrees) or high-risk situations (a pubertal growth spurt).  

Full-time treatment is a tough challenge, especially if you consider that it usually begins at between 11 and 15 years of age, in other words, just before or during adolescence, which is a notoriously tricky time that already brings plenty of changes. Youngsters of this age no longer see the world through children’s eyes. Instead, they begin to experience all kinds of doubts and insecurities, and sometimes they are unhappy about the changes in their appearance, or about having to wear dental braces or glasses. It is therefore entirely understandable that being prescribed bracing treatment can be upsetting for them, and also for their parents who would do anything to spare their child any suffering.

In the literature, it is suggested that the start of bracing treatment (the first 6 months) can negatively affect the patient’s quality of life.
Even though there is no scientific proof of this — on the contrary, research tells us that treatment, ultimately, does not negatively impact quality of life —, there can be no denying that the early stage of bracing is hard and must be overcome. In particular, it is crucial to avoid poor adherence to the treatment that might potentially lead to its early and total abandonment and thus expose the patient to all the risks, in terms of progression and consequent severity of the condition, that are associated with scoliosis in childhood and adolescence. 

“This is a very important issue for us at Isico”, remarks physiotherapist Lorenza Vallini. “We have long been aware of the difficulties youngsters face at the start of this experience, which we liken to a marathon rather than a sprint: our youngsters have to get to the finish line on their own two feet, but we healthcare professionals are alongside them all the way, guiding and helping them and their families.”

And what about friends? Well, friends are like fans on the terraces; if they feel involved, they will cheer the patient on.

All this is perhaps easy for us to say because the fact is that when full-time bracing is prescribed, which means 23 or even 24 hours a day, the patient can feel like their world is falling apart. That is why we at Isico like to make sure we always have a chat with the family and the youngster after their appointment.

“We know very well that this is a key moment, a watershed moment that needs to be addressed together”, Vallini continues. “Our therapists are trained to listen to doubts, answer a thousand questions, and provide all the necessary explanations. We try to get the youngsters involved, showing them videos of other young “brace wearers” doing all kinds of everyday activities, including sports, with their brace on. They are often visibly surprised to see their counterparts happily taking a dip in the sea or swimming pool.”

It is also important not to overlook the aesthetics of brace-wearing!

We at Isico are always careful never to overlook the aesthetic aspect. Many of our patients are girls who are of an age at which comparing yourself with others is a normal part of growing up: “We always stress that braces are hardly visible under clothes, and we give patients tips and advice about their appearance”, Vallini says. “This moment is an opportunity to start building an alliance with the patient. Obviously, our work and involvement don’t end with that one chat, which on the contrary is the starting point for a process that will continue over the monthly sessions we have with these youngsters thereafter. The first session after delivery of the brace is particularly important, as it is when we try to present this “intruder” as a friend, not the easiest to be sure, but a friend nonetheless.”

That is why this particular session is designed to be motivating as well as technical, an opportunity to tackle any issues or doubts that have arisen and gather the patient’s reactions – both the tears and the laughter. 

As soon as the brace arrives, it is tested by an Isico doctor, who provides a series of explanations in order to get the treatment off to a good start. As a rule, whenever possible, a meeting with the therapist is also arranged so that youngsters are not left to face their fears and doubts alone. When this is not possible, a telephone contact is offered and, after the first session, the patient is also contacted by email to find out if there have been any difficulties.

Availability, care and assistance are the cornerstones of our approach: “We never underestimate any request, from the simplest to the most complicated”, Vallini says. “We make sure patients realise we are always there for them, as we want them to be reassured that there is always someone available for them.”

The importance of listening
The Isico team includes all the specialists necessary to support and monitor young brace wearers, so not only doctors and orthopaedic technicians, but also therapists and a psychologist (who sees patients directly on the rare occasions when this is felt to be necessary, but usually intervenes through the other professionals). All the team members will accompany the patient for a part of their journey, to support them and ensure that the therapy is going as it should, particularly at the start.

Will there be any other particular crisis moments? Undoubtedly! In the course of a long and demanding treatment process, undertaken in the midst of a thousand other emotional interferences from the outside, this is only to be expected: “The main thing for us is to remain vigilant so that we know when a family might be needing extra help”, Vallini says. “Everyone is ready to add the right input at the right time to help patients reach the finish line. And when they do, the smiles and hugs we get from them are quite wonderful, as is their tangible sense of pride”.

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”.

Isico launches a free psychological support service

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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”.