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
0-2 years old3-5 years old6-12 years old13-18 years old19+ years old
Country of Residence
Growth Hormone Deficiency (GHD)Turner SyndromeNoonan SyndromeIdiopathic Short StatureOther
Diagnosis Journey
Less than 6 months old6 months to 1 year old1-3 years oldMore than 3 years old
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
Less than 1 month1-6 months6 months to 1 yearMore than 1 year
YesNo
Access to Care
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 my child’s daily 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?
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.
NeverRarelySometimesOftenVery often
School performanceSocial relationshipsParticipation in activitiesIndependenceBody image or self-confidenceSleepNone of the above
Yes, and it was helpfulYes, but it was not helpfulOffered, but not accessedNo, never offered
Neurodevelopmental & Learning
YesNoUnsure
Attention or focusLearning difficultiesSpeech or language delaysSocial communicationExecutive functioning (planning, organization)None of the above
YesNoNot offered, but would have been helpful
Yes, well coordinatedSomewhat coordinatedNot coordinatedNot applicable
Syndrome-Specific Medical Complexity Branch
Yes, well coordinatedSomewhat coordinatedPoorly coordinatedNot coordinated at all
Very littleSomeA lotAlmost all of it
Growth Hormone Treatment

The following questions apply if your child has received growth hormone treatment.
Very manageableSomewhat manageableDifficultVery difficult
Cost or reimbursementInjection burdenSide effectsEmotional distressSupply or access issuesLack of alternative options
YesSomewhatNo
Transition & Independence
YesNo
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?
Very preparedSomewhat preparedNot very preparedNot prepared at all
YesSomewhatNo
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?
1 – Very poor2 – Poor3 – Fair4 – Good5 – Excellent
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