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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.”

My treatment hasn’t had the desired effect: why?

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Sometimes, even when a patient has followed the prescribed course of treatment (bracing and exercises), the final outcome isn’t what they expected and there are no marked improvements. Why is this?

Let’s start by reiterating something we all know to be a fact.

Scoliosis is a disease that can strike with varying degrees of severity and, as we have said many times, its origin is not known. However, although we don’t know what causes it, thanks to scientific research we are learning more and more about how it evolves and how to treat it.

The vast body of scientific literature now available on this topic has shown us the importance of monitoring scoliosis and its evolution during skeletal growth, in particular during the pubertal growth spurt, which is known to be the most critical phase in the course of this disease.

The aim of conservative treatment, which includes specific exercises and bracing, is to limit the progression of scoliosis during growth, so as to prevent problems from arising in adulthood, and to try and avoid the need to perform highly invasive surgery.

The risk of the disease worsening differs from patient to patient and from curve to curve. Unfortunately, there are no elements that allow us to predict this risk; all we have are indicators that can tell us how likely it is that the condition will worsen and, even then, we are only talking in terms of probabilities. Therefore, the task of the medical team responsible for making the diagnosis and treating the patient is to constantly monitor the situation and adjust the treatment as necessary. After all, we do not want to be too aggressive, but at the same time we need to avoid the risk of underestimating the case and prescribing an ineffective treatment.

The other key factor for a successful outcome is the patient’s “adherence” to the prescribed treatment, in other words his/her ability to follow it constantly and with precision.

How much do these two factors influence the result?

A few years ago, we did a study of “extreme” cases (less than 3% of the total), i.e. those patients showing the best and worst treatment outcomes, defined respectively as a greater than 20° improvement or a greater than 20° worsening of the curve. 

We found that all the patients (100%) who obtained exceptional results were treated with both bracing and exercises. But we also found that 50% of the patients with the poorest outcomes had nevertheless followed the treatment perfectly. In these cases, while the treatment had failed to arrest the course of particularly aggressive forms of scoliosis, the patients’ adherence to it had undoubtedly slowed down the worsening of the curve and prevented it from being as marked as it would have been without any treatment at all. And this brings us back to what we said at the start: although some cases show no apparent improvements, scoliosis that has worsened a little at the end of treatment must be considered a great success if the outcome of no treatment would have been a far more severe deterioration.

So, what do we ask of our patients? To collaborate, adhering to the treatment fully and regularly attending check-ups, so as not to run the risk of obtaining disappointing results, despite being treated.