Development of a Specific Scale of Life'Quality for Children With Low-flow Vascular Malformations
Development of a Specific Scale of Life'Quality for Children With Low-flow Vascular Malformations
The low-flow malformations include venous and lymphatic malformations. The malformation often
 affects the skin and can extend deep to the muscles and bone, as well as to deep organs.
 Children with low-flow vascular malformation and their family have difficulty living with
 their illness and have an impact on their life quality.

 In this context, the aim of the study is to develope life quality test for the children
 between 11 to 15 years old.
The low-flow vascular malformations include venous and lymphatic malformations. These
 malformations are made of dilated dysplastic vessels in which the circulation is lowed down,
 which can lead to phenomena of thrombosis, hemorrhage, with sometimes a repercussion on the
 general coagulation. The malformation often affects the skin and can extend deep to the
 muscles and bone, as well as to deep organs. It presents by swelling sometimes voluminous and
 often painful. Children with low-flow malformations and their families have difficulty living
 with their illness and have an impact on their quality of life (QOL).

 These difficulties seem relative to :

 -  the lack of knowledge of the disease by doctors and the general public - medical
 difficulties directly related to the disease and its evolution: pain, deformation,
 biological anomaly, chronicity, lack of effective treatment

 -  psychological difficulties related to the visible and unesthetic appearance of the
 lesions

 -  excluding certain social activities The difficulties experienced by patients with
 slow-flow malformations and their family, as well as the impact on their QOL, have never
 been studied. Although QOL appears to be the best reflection of the severity of a
 chronic condition, there is no QOL questionnaire that is appropriate for the slow-flow
 malformations of the child or adult.

 The aim of the study is to develope a specific life quality test for children between 11 to
 15 years old.

 These data will be used in a second time to build and validate a scale of quality of life
 specific slow-flow malformations of the child aged 11 to 15 years old. The study is build in
 3 parts:

 Focus group: collect the dimension of the lived experience and the perceptions of the
 children with slow-flow malformations as well as their needs and their expectations

 Validation of the life quality test: the data obtained during focus group will be used to
 develop the scale of life quality specific to the child aged 11 to 15 years suffering to
 low-flow malformations. In a second time to validate the scale, this life quality test will
 be send to patients.
Inclusion Criteria:

 Phase 1:

 -  Patient with slow-flow vascular malformation, regardless of clinical form, severity
 (clinical and imaging diagnosis), aged 11 to 15 years-old.

 -  Patient with slow-flow vascular malformation, whatever its clinical form, its severity
 (clinical and imaging diagnosis), aged over 15 years-old.

 -  Parents of a patient with slow-flow vascular malformation, regardless of clinical
 form, severity (clinical and imaging diagnosis), aged 11 to 15 years-old inclusive

 -  Patient affiliated to a social security scheme

 -  Patient having given his consent or for the minor whose legal representative has given
 written informed consent.

 Phase 2 :

 -  Patient with slow-flow vascular malformation, regardless of clinical form, severity
 (clinical and imaging diagnosis), 11 to 15 years-old of age included.

 -  Patient affiliated to a social security scheme

 -  Patient having given his consent or for the minor whose legal representative has given
 his informed consent

 Exclusion criteria :

 For both phases: Pregnant or lactating women or girls,

 -  Vulnerable persons,

 -  Majors subject to a legal protection measure or unable to express their consent Phase
 1: Patient or parent who does not speak the French language and therefore are unable
 to express themselves in the focus groups.

 -  Patient under 11 years-old; Phase 2 : Patient who does not speak French and is
 therefore unable to complete quality of life questionnaires

 -  Patient under 11 or over 15 years-old.