Quality of Care Survey English

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.
Age of Child with growth disorder

0-2 years old3-5 years old6-12 years old13-18 years old19+ years old
Country of Residence
Diagnosis

Growth Hormone DeficientTurner SyndromeNoonan SyndromeIdiopatic Short StatureOther
Child's age at diagnosis

Less than 6 months old6 months to 1 year old1-3 years oldMore than 3 years old
Was the diagnosis made by a primary care doctor, specialist, or other?

Primary Care DoctorSpecialistOther
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?

Less than 1 month1-6 months6 months to 1 yearMore than 1 year
Do you feel that the healthcare professionals involved had sufficient knowledge about the disorder?

YesNo
What challenges have you experienced in accessing care for your child?

Lack of knowledgeable specialistsFinancial barriersDifficulty accessing medicationLimited treatment optionsGeographic distance to care facilitiesLack of information about innovative or new treatmentAccess to care and support for mental health / impact on wider lifeLack of recognition of the impact the condition has on our/my child’s lifeLack of practical support
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?
Is your child currently or will they soon be transitioning into adult care?

YesNo
What aspects of transition care are you happy with?
What transition of care are you concerned with pertaining to your child?
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?
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?
Is there anything else you would like to share about your experience or your child’s needs?
Mental & Emotional Impact (All Disorders)
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)?

NeverRarelySometimesOftenVery often
Impact on daily life: Has your child’s condition affected any of the following? (Select all that apply)

School performanceSocial relationshipsParticipation in activitiesIndependenceBody image or self-confidenceSleepNone of the above
Support received: Has your child ever been offered psychological or mental health support as part of their medical care?

Yes, and it was helpfulYes, but it was not helpfulOffered, but not accessedNo, never offered
Unmet need: Do you believe psychological support should be a standard part of care for children with this condition?

YesNoUnsure
Neurodevelopmental / Behavioral Branch
Neurodevelopmental concerns: Has your child experienced challenges in any of the following areas?

Attention or focusLearning difficultiesSpeech or language delaysSocial communicationExecutive functioning (planning, organization)None of the above
Assessment: Has your child ever received a formal neurodevelopmental or educational assessment?

YesNoNot offered, but would have been helpful
Coordination: Were medical and educational professionals coordinated in addressing these needs?

Yes, well coordinatedSomewhat coordinatedNot coordinatedNot applicable
Growth Hormone–Specific Branch
Treatment burden: How manageable has growth hormone treatment been for your child and family?

Very manageableSomewhat manageableDifficultVery difficult
Barriers: Which challenges have you faced with growth hormone treatment? (Select all that apply)

Cost or reimbursementInjection burdenSide effectsEmotional distressSupply or access issuesLack of alternative options
Shared decision-making: Did you feel adequately informed and involved in decisions about starting or continuing treatment?

YesSomewhatNo
Syndrome-Specific Medical Complexity Branch
Multisystem care: Does your child receive coordinated care across specialties (e.g., cardiology, endocrinology, genetics)?

Yes, well coordinatedSomewhat coordinatedPoorly coordinatedNot coordinated at all
Care burden: How much responsibility do you feel falls on you to coordinate your child's care?

Very littleSomeA lotAlmost all of it
Transition-Specific Add-On (Mental Health + Independence)
Emotional readiness: How emotionally prepared do you feel your child was or is for transition to adult care?

Very preparedSomewhat preparedNot very preparedNot prepared at all
Independence support: Was your child given support to build independence (self-management, appointments, medication)?

YesSomewhatNo
Should be Empty:

Quality of Care Survey

Mental & Emotional Impact (All Disorders)

Neurodevelopmental / Behavioral Branch

Growth Hormone–Specific Branch

Syndrome-Specific Medical Complexity Branch

Transition-Specific Add-On (Mental Health + Independence)