Doctor Discussion Guide for Children

Ben and his mother, living with XLH

XLH symptoms can progress over time and it can be difficult to understand how they may be impacting your child’s day-to-day life. The following questionnaire can help you prepare and identify talking points to discuss with the doctor during visits.

 

Be as honest as you can to help give your doctor a better picture of your child’s symptoms. There are no right or wrong answers. Complete this questionnaire before each primary care provider and XLH specialist appointment and see how the answers change over time.

 

*Parents and caregivers of children with suspected XLH should encourage older children to answer the questionnaire, if they are able.

 

This questionnaire is provided as a tool to help you prepare for healthcare visits. Your responses are not stored or used for any purpose.

If you prefer to fill out the questionnaire on paper, download it here.

Question 1

Since their last appointment, has your child expressed disinterest in or avoidance of social or school activities due to:

Feeling tired or a lack of energy?

Difficulty moving?

Experiencing teasing for being short or for their physical appearance?


DID YOU KNOW?

Physical function decreased in children with XLH icon

XLH can affect height, physical function, and the ability to do basic everyday activities such as walking, dressing, and maintaining personal hygiene. Children with XLH report less engagement in physical activities than their peers.

Question 2

Since their last appointment, how often has your child complained of pain?

Where has your child experienced pain? Check all that apply or click the locations on the image of the body. (optional)

DID YOU KNOW?

Joint and bone stiffness due to X-linked hypophosphatemia icon

In a survey of children with XLH, 80% were reported to have bone or joint pain/stiffness and 60% reported muscle pain.

Question 3

Since their last appointment, has your child needed assistance to move due to pain or corrective surgeries?

Please describe. (optional)

DID YOU KNOW?

Surgical intervention due to XLH icon

Nearly 50% of children with XLH were reported to have had surgical interventions to correct bone abnormalities.

Question 4

Since their last appointment, has your child had any dental complications?

How often have you had to take your child to the dentist? (required)

Describe the type of dental complications. (optional)

DID YOU KNOW?

Tooth complications due to XLH icon

About 50% of children with XLH were reported to have had dental abscesses and excessive cavities. Some children can begin to require root canals as well.

Question 5

How recently have you discussed options for managing your child’s XLH with your doctor?

Describe how your child’s XLH is managed on a daily basis and any concerns you may have about XLH management. (optional)

List any additional questions or notes to discuss with your child’s doctor at their next appointment. (optional)

DID YOU KNOW?

X-linked hypophosphatemia research icon

Research is underway to better understand and treat XLH. Be sure to ask your doctor about the latest advancements in XLH management.

Thank you for completing this questionnaire.


The answers you’ve provided may help guide your discussion on XLH management with your child’s doctor.

Please download a PDF of your answers and remember to bring it to the next appointment.