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The therapeutic education of patients and their close relations is, as yet, poorly developed in France in the field of oncology (Pérol2007), in particular for cancers of the upper aerodigestive tract (Allison2010). In the case of pharyngeal and laryngeal cancer, total laryngectomy associated with radiotherapy remains a reference treatment for advanced stage cancers. This mutilating surgical procedure has a major impact on the patient's life, due to its physical and functional sequelae: phonatory (loss of physiological voice), feeding, olfactory and aesthetic (tracheostomy). Its psychosocial consequences are also important, owing to the biographical disruption and the identity-related metamorphoses associated with illness and its treatment, which alter the quality of life not only of patients, but also of their close relations. Indeed, transformation is not only at individual level, it also impacts the life of close relations, in particular spouses, who share the day-to-day lives of patients (Babin 2010). Currently, care for laryngectomized patients consist essentially in informing and educating them on certain technical procedures (cannula replacement, mucosity aspiration, tracheostomy or phonatory implant cleaning) during hospital admission. Such education may be formalized and dispensed within the context of a therapeutic education program.
The issue of this study will be to determine what therapeutic education program we should offer patients and their close relations in order to accompany them throughout their experience of laryngectomy and to reduce its impact on social and professional aspects of life.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| PETAL program | Experimental | Patients with total laryngectomy and their close relatives, benefiting from the therapeutic education program PETAL |
|
| Usual care | No Intervention | Patients with total laryngectomy and their close relatives, benefiting from the usual care |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| PETAL program | Other | patients and their close relations will benefit from the therapeutic education program PETAL in order to accompany them throughout their experience of laryngectomy and to reduce its impact on social and professional aspects of life. |
| Measure | Description | Time Frame |
|---|---|---|
| Quality of life score (PSS-HN scale) of patients with total laryngectomy | Difference in gain observed at six months in the mean quality of life score (PSS-HN scale) of patients with total laryngectomy and their close relatives, having benefited from the PTE program and those having benefited from usual care. | 12 months |
| Measure | Description | Time Frame |
|---|---|---|
| Quality of life score (EVA scale) of patient's close relatives | difference in gain observed at six months in the mean quality of life score (EVA scale) between close relations having benefited from the PTE program and those having benefited from usual support. | 12 months |
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Patient inclusion criteria
Close relation inclusion criteria
Patient exclusion criteria - Physical, psychical, psychiatric or cognitive incapacity to answer to questions or participate in interviews/sessions.
Close relation exclusion criteria
- Physical, psychical, psychiatric or cognitive incapacity to answer to questions or participate in interviews/sessions.
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Emmanuel PH BABIN | Contact | +33231064866 | babin-e@chu-caen.fr | |
| François FOURNEL | Contact | +33231065488 | fournel-f@chu-caen.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU Caen | Recruiting | Caen | France |
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