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Table 1 Questions from the questionnaire, divided by topic group

From: Experiences of patients with Poland syndrome of diagnosis and care in Italy: a pilot survey

A) DIAGNOSTIC PATH
• Time of Diagnosis: when was the diagnosis confirmed?
• Who Diagnosed: who made the diagnosis?
• Region of Diagnosis: was the diagnosis made in your home region?
• Time of Symptoms Onset: at what age did the first signs of Poland syndrome appeare?
B) QUALITY OF CARE AFTER DIAGNOSIS
• Difficulty to Find a Specialist for Treatment: Did you find it difficult to identify a specialist to treat your condition?
• Quality of Treatment: How do you feel that your disease is being treated?
• Impact: What impact did the difficulties you encountered in the treatment course have on you?
• Reference Figure during Treatment: Did you know who to refer to during the course of treatment?
• Feeling Understood during Treatment: Did you feel understood by the doctor during the communication process?
C) RIGHTS AND SOCIO-ECONOMIC HARDSHIP ENCOUNTERED
• Knowledge of tax Exemption: Are you aware of the possibility of accessing health benefits in relation to your condition?
• How Found Out About Exemption: How did you access the benefits of exemption and / or disease monitoring?
• Exemption: have you been given an exemption for your condition?
• Sufficiency of the Exemption: Does the exemption fully cover the diagnostic and therapeutic needs of your condition?
• Feeling of Protection: do you feel sufficiently protected by the health care structure of your region?
• Forgo Treatment: have you ever forgone some visits or treatments because of the costs or organizational issues you encountered?
D) COLLABORATION AMONG HEALTH CARE PROFESSIONALS
• General Practitioners _Pediatrician Role: How was the relationship with your general practitioner / pediatrician during the diagnostic and therapeutic clinical course?
• Collaboration: did your family doctor and specialist collaborate with each other?
E) ASSOCIATIVE SUPPORT AND ACTIVITIES
• AISP Usefulness: Do you think a patient’s association is useful for your pathology?
• AISP Advantage in care: Do you think that AISP has somehow facilitated your treatment path?
• Join AISP: Are you enrolled in the Italian association of Poland syndrome?
• Participate in AISP Activities: do you participate in the activities of the association?
• PolandDay Usefulness: Do you think AISP promotes your relationship with the various health services and operators?
F) SCIENTIFIC RESEARCH
• Volunteer: Would you like to contribute as a volunteer, even occasionally, to the activities of the Association?
• Research: Do you think that scientific research is important in finding the cause of Poland syndrome?
• GeneticDonation: Would you donate your genetic material for research?
• Family involvement in genetic research: Would you share the results of genetic tests and research with your family members?