Welcoming and supporting osteosarcoma patients and their families

The operation of AISOS

Diagnosis of osteosarcoma is a very difficult activity that requires professionalism of excellence. But even after the diagnosis is made, patients and their families need help to cope with the material and emotional difficulties generated by a treatment and rehabilitation course of approximately 24 months.

AISOS and its teams of professionals work by placing the patient at the center of attention at all times: before, during and after the surgery, which in 90% of cases is necessary.

The activities that AISOS carries out can be articulated as follows

Information and training

Osteosarcoma mainly affects children, it arrives suddenly, it is not a secondary pathology to others, it arrives at night with acute pains, a burning pain that does not go away with common analgesics.

Feeling pain, the child tends not to say anything to his parents, he tends to defend them first and not make them worry; he is afraid of no longer being able to do the same things he did before, no longer being able to play with his peers and being isolated from them. He notices a bruise that does not go away, but often children, while playing, are subject to bruises and therefore does not pay attention to it.

It is only when the pain becomes too acute that he turns to his parents, who, not knowing who to turn to, unwittingly lengthen the diagnosis time by relying on general practitioners and pediatricians who are not yet sufficiently informed and updated.

This is why AISOS organizes refresher seminars and courses for doctors, specialists and health personnel, so that the time of diagnosis is getting shorter and more and they can recognize the disease quickly and immediately.

Time is of the essence when it comes to osteosarcoma. A delay in diagnosis, even of as little as 20 days, can have major repercussions on the patient.

Thanks to information and training, this can be avoided.

Support

The neuropsychiatric team is made up of: a child neuropsychiatrist, two psychotherapists (child neuropsychiatrists or psychologists), a testist psychologist and a “support partner”.

The child neuropsychiatrist is called by the association at the moment of suspicion and shares the diagnostic process with the entire medical team who will have to relate to the patient by participating, therefore, in communicating the diagnosis to the patient and family members and in the construction of the therapeutic process, inserting his interventions in a project tailored to that particular patient and that particular family, through the evaluation of the concept of resilience.

By resilience we mean the ability to recover from crises and overcome the difficulties of life. It is a concept that is based on strengths rather than weaknesses and deficits. The purpose of the neuropsychiatric team that works on this type of pathology is, first and foremost, to assess the resilience of the family, the individual and also that of the group of professionals dealing with the case. Therefore, working not only on the trauma, but also on the strengths possessed by the family unit, the patient and the therapeutic team.

An approach centered on family resilience aims to identify and reinforce the decisive interactive processes that allow families to resist and react to the advent of potentially disruptive critical contingencies, shifting their perspective of observation from a vision centered exclusively on damage to a vision that you underline the uneasy aspects, recognizing them a positive potential for evolution and recovery.

During diagnosis

In the initial phase, the neuropsychiatrist carries out, in rapid sequence, three interviews with the patient’s family, aimed at building the therapeutic alliance with the family members and at the initial assessment of family resilience through specific tests administered to both the child and / or adolescent than to parents.

The “support partner“, which the neuropsychiatrist introduces to family members and who will begin to follow the patient once a week with the informed consent of the parents, is an operator (doctor in specialist training, psychologist, rehabilitation therapist), who educated on the case by the neuropsychiatrist and supervised by him during the project, he will take care of supporting the resilience of the child and / or adolescent through concrete and daily support both in moments of normality and in moments in which it will be necessary to face interventions and rehabilitation. He is a fundamental figure who mediates the relationships between the patient and the outside world. It is not a psychotherapist but a rehabilitator even if very specialized.

The need for a psychotherapeutic intervention for the patient or for his family members is assessed on a case-by-case basis and if it is deemed necessary, the most appropriate time for his insertion and the type (focal or prolonged intervention) is evaluated

During therapy

At the start of chemotherapy, to which the patient will have to undergo, the neuropsychiatrist together with a psychologist or a family and relational therapist follows the parents once every two weeks, remaining available “on demand” while the “support partner” meets the patient three times a week for three hours. Its presence is intensified in critical moments and remains available 24 hours a day by telephone for the patient. Balint groups * for doctors and staff can be formed at the request of the team, but also at the request of the neuropsychiatrist in case he notices a particular suffering of the group of operators.

If surgery is required, both in the previous and subsequent phases, the neuropsychiatric team remains available to the family 24 hours a day, proposing, without imposing, a meeting before the surgery and one immediately after. The “support companion”, on the other hand, remains at the patient’s disposal with a discreet but close presence. In this phase, what matters is to be available but not invasive. Family members and patients must know that there is support, but decide whether to use it or not. In the phase following the surgery, the neuropsychiatrist is present when the surgeon explains the outcome of the operation to family members. The “support partner” is present when the outcome of the intervention is explained to the patient (in this case only if the patient wishes).

* The Balint Groups – so called from the name of their creator, Michael Balint – are a group work method intended for doctors and other nursing and helping professions, which has as its purpose the psychological training in the relationship with the patient, the “maintenance of the caring role” and the promotion of working well-being.

During rehabilitation

In the rehabilitation phase, the process existing in the pre-surgery phase is resumed. The “support companion” also manages the resumption of school activities and follows up on contacts with the school he belongs to. The rehabilitation phase is the phase in which it is most often useful to insert a focal psychotherapy aimed at repairing the narcissistic wound that amputations and motor difficulties can cause in the patient. Wounds that can affect rehabilitation compliance.

In the event of bad outcomes when there is a bereavement, the neuropsychiatric team, especially in the person of the neuropsychiatrist and psychologist, must build a project lasting at least two years aimed at the elaboration of the bereavement and the support of resilience. It is a project that must be addressed to all close family members (parents, brothers, grandchildren, but also to the spouses of brothers and sisters) which requires a psychotherapeutic or family or individual intervention.

The neuropsychiatric team in the daily work of the association also indirectly provides support to families and patients, especially for logistical reasons. Such an intervention presupposes the reachability of patients through technical means (tablet, smartphone, computer) that allow clear and also emotionally meaningful communication. This intervention must be available 24 hours a day through shifts of specialized personnel.

To improve the intervention project and to evaluate the results on the patient’s quality of life and on the improvement of compliance, patients with a positive outcome will be followed up over time and reassessed at two and five years.

An intervention of this type with an average duration of two years on a patient requires on average a total number of hours by the various professionals of 1000 hours without including the 24-hour assistance service.

Rehabilitation and reintegration

Osteosarcoma is a tumor with a highly poor prognosis, even if with the current therapeutic protocols (pre and post-operative chemotherapy, bone resections with prosthesis implantation) and in the presence of an early diagnosis, the situation has definitely improved, both as far as it concerns mortality and quality of life.

It therefore makes sense to speak of Motor Rehabilitation as well, given that in most cases patients are subject to growth and subjected to highly toxic chemotherapy treatments and more or less demolishing surgeries.

This is why we work to establish a rehabilitation protocol that can be integrated with the other protocols in use, in order to build a path to improve the living conditions of patients suffering from osteosarcoma as much as possible.

A first physiatric check-up can be performed after the first course of chemotherapy, to evaluate the clinical situation especially regarding posture and muscle tone and to take appropriate measures.

Surely a specialist physiatric check should be carried out after any surgery to restore the functions of the injured limb or compensate for the lost functions as well as correct posture defects that arise after often demolishing surgeries.

For all these reasons it is important to support the figures who follow the clinical path of patients suffering from osteosarcoma (orthopedic surgeon, oncologist, histologist, psychologist, etc.) with a rehabilitation team in order to maintain and improve the activities of daily life.

AISOS Onlus aims to create optimal paths in order to facilitate the assistance of patients suffering from this pathology, with interventions by the rehabilitation team that can be carried out both at home and in the clinic through structures accredited with the Regional Health System that can fully take care of the patient.