0-TESTO COMPLETO.pdf - Fondazione Santa Lucia

Sezione III: Attività per progetti
METHODS
Main Aim 1 (Current access of CMT patients to rehabilitation therapy)
We will identify CMT patients using different sources: clinical and genetic
records of in and out-patients of third level hospitals, the Patients’ Association
ACMT-Rete, and the Database for Rare Diseases. Moreover all 29 Don Gnocchi
Foundation centers will be involved for the recruitment. An age and sex
stratified random sample of 400 patients will be selected. All identified
patients with confirmed diagnosis will be contacted by letter and invited to
receive a structured interview (sociodemographic status, clinical status, current
an past use of rehabilitation services) and to complete 2 questionnaires to
evaluate the patient’s QoL, and family support (SF36, Family APGAR).
Descriptive statistics will be used to define the characteristics of the sample,
and the frequency and type of rehabilitation services received. The combination
of clinical and sociodemographic characteristics and physiotherapy services
received, will be determined. The study will be conducted according to
the EU rules on safeguard on patients’ privacy and rights. (All Units will be
involved).
Main Aim 2 (Consensus on best rehabilitation approach)
No established standards of physiotherapy care for CMT exists. Specifically,
we will define a common set of requirements of the rehabilitation
services in terms of clinical efficacy, effectiveness, patient focus (interventions
tailored to individual needs, and preferences), accessibility (promote
equality of access), and continuity. The methods used to define the core of
standards will be: (a) literature review (Medline, PubMed, Embase, Physiotherapy
Evidence Database, and the Cochrane Library; prespecified search
strategy; two independent reviewers); (b) consensus between experts (physiatrists,
physiotherapists, neurologists, occupational therapists); (c) focus
groups of CMT patients, their partners, relatives and caregivers. (All Units
will be involved).
Main Aim 3 (Network of centers)
An existing nucleus with consolidated expertise in CMT and well-established
collaborations is the basis for the CMT network, which will be
extended to promote achievement and maintenance of defined standards,
and continuous improvement in the quality of rehabilitation care received
by CMT patients. The network will be composed by health personnel with
expertise in CMT (neurologists from tertiary referral centers, orthopedics),
physiotherapy (physiatrists, physiotherapists) and by CMT patients. The
network will perform training of health personnel, produce guidelines and
protocols for CMT patients, promote clinical audit protocols to review existing
standards, disseminate the knowledge, and finally improve current clinical
practice.
All the 29 Don Gnocchi centers will be involved. A dedicated website will
be set up in the frame of the project and a program for permanent update of
the content will be defined.
730 2009