Quality of Care Survey

Quality of Care Survey

This is a Quality of Care Survey hosted by ICOSEP. ICOSEP is interested in your feedback to understand the issues you may experience as a patient or parent/guardian with a growth disorder. Please fill out this survey and allow us the opportunity to work on assistance in your country.
Background
Age of Child with growth disorder
Country of Residence
Diagnosis
Diagnosis Journey
Child's age at diagnosis
Was the diagnosis made by a primary care doctor, specialist, or other?
How many visits or referrals did it take to receive the diagnosis?
On a scale of 1 to 5, how would you rate the quality of the diagnosis process? 5 is the best, 1 is the worst
How long did it take to receive a diagnosis after first seeking medical attention?
In your experience, did the healthcare professionals involved demonstrate sufficient knowledge about your child’s condition?
Access to Care
What challenges have you experienced in accessing care for your child?
If there are other challenges you have experienced which are not referenced in the question above, please explain them here
What additional resources or support would be most helpful to your family?
Mental & Emotional Impact

The following questions focus on the emotional and daily-life impact of your child’s condition. Please answer based on your experience.
Emotional impact on child: How often has your child experienced emotional or psychological distress related to their condition (e.g., anxiety, sadness, frustration, low self-esteem)?
Impact on daily life: Has your child’s condition affected any of the following? (Select all that apply)
Support received: Has your child ever been offered psychological or mental health support as part of their medical care?
Neurodevelopmental & Learning
Unmet need: Do you believe psychological support should be a standard part of care for children with this condition?
Neurodevelopmental concerns: Has your child experienced challenges in any of the following areas?
Assessment: Has your child ever received a formal neurodevelopmental or educational assessment?
Coordination: Were medical and educational professionals coordinated in addressing these needs?
Syndrome-Specific Medical Complexity Branch
Multisystem care: Does your child receive coordinated care across specialties (e.g., cardiology, endocrinology, genetics)?
Care burden: How much responsibility do you feel falls on you to coordinate your child's care?
Growth Hormone Treatment

The following questions apply if your child has received growth hormone treatment.
Treatment burden: How manageable has growth hormone treatment been for your child and family?
Barriers: Which challenges have you faced with growth hormone treatment? (Select all that apply)
Shared decision-making: Did you feel adequately informed and involved in decisions about starting or continuing treatment?
Transition & Independence
Is your child currently or will they soon be transitioning into adult care?
What aspects of transition care are you happy with?
What information have you received from your healthcare team regarding transition of care?
What would you have wished to receive from your healthcare team with regards to information and tools during the transition from childhood to adulthood?
If your child has already transitioned into adult services, what aspects of this experience were positive, and which were challenging?
Emotional readiness: How emotionally prepared do you feel your child was or is for transition to adult care?
Independence support: Was your child given support to build independence (self-management, appointments, medication)?
What aspects of your country’s healthcare system or care for your child do you feel are positive?
Are there any specific programs, policies, or professionals you have found particularly helpful?
Overall, how would you rate the quality of care your child receives in your country?
Is there anything else you would like to share about your experience or your child’s needs?
Should be Empty:

Quality of Care Survey

Background

Diagnosis Journey

Access to Care

Mental & Emotional Impact

Neurodevelopmental & Learning

Syndrome-Specific Medical Complexity Branch

Growth Hormone Treatment

Transition & Independence