Dear Potential Research Subject

We are beginning to research how to improve the quality of care for children with rare diseases such as MECP2 Related Disorders.  We are contacting you because you have a child affected by a MECP2 mutation, and may be eligible to participate.

The study will assess your child’s gastrointestinal (tummy) quality of life by using a questionnaire called the Gastrointestinal Health Questionnaire (GHQ).  If you fill out this questionnaire, you are consenting to take part in this research.  We will take all steps possible to keep this information confidential.

Participation in research is always voluntary.  If you do not take part, you will not lose any of your rights.  It will not affect you badly in any way.  You may decide to stop taking part at any time.  If you decide not to take part, it will not affect your rights or benefits.  It will not change the health care you receive now or in the future.

If you have any questions about this survey or the study, please contact Dr. Muharrem Ak by email at Muharrem.Ak@bcm.edu.  If you have additional questions about your rights as a research subject, contact the Institutional Review Board for Human Subject Research for Baylor College of Medicine and Affiliated Hospitals at (713) 798-6970.

If you agree to participate in GHQ survey, please click on the link.

Sincerely,

Texas Children’s Hospital Rett Center

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Adresse e-mail *
Gastrointestinal Health Questionnaire (GHQ) for Rett Syndrome and MECP2-Related Disorders

PARENT REPORT FOR CHILDREN

Directions:

This survey contains a list of symptoms that might be a problem for your child.  Please tell us how much of a problem each one has been for your child during the past two weeks.

There are no right or wrong answers. Please answer ALL questions. If you do not understand a question, please ask for help.

Completed By *
Name of Child *
Birthdate of child *
JJ
/
MM
/
YYYY
Gender of child *
In the past two weeks, how much of a problem has this been for your child
I.a. General Health/Pain *
Never
Almost Never
Sometimes
Often
Almost Always
1. Has been unwell because of stomach or intestinal problems
2. Is irritable because of stomach or intestinal problems
3. Has difficulty gaining weight because of stomach or intestinal problems
4. Has more frequent breath holding because of stomach or intestinal problems
5. Has more frequent air swallowing because of stomach or intestinal problems
I.b. How relevant is each question to you? (General Health/Pain) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant
1. Has been unwell because of stomach or intestinal problems
2. Is irritable because of stomach or intestinal problems
3. Has difficulty gaining weight because of stomach or intestinal problems
4. Has more frequent breath holding because of stomach or intestinal problems
5. Has more frequent air swallowing because of stomach or intestinal problems
I.c. How important is each question to you? (General Health/Pain) *
Not important
Slightly important
Fairly important
Very important
1. Has been unwell because of stomach or intestinal problems
2. Is irritable because of stomach or intestinal problems
3. Has difficulty gaining weight because of stomach or intestinal problems
4. Has more frequent breath holding because of stomach or intestinal problems
5. Has more frequent air swallowing because of stomach or intestinal problems
II.a. Eating , Chewing, and Swallowing *
Never
Almost Never
Sometimes
Often
Almost Always
1. Has refused to eat or does not eat by mouth
2. Has trouble chewing food
3. Takes longer than 30 minutes to eat a meal or get tube feedings
4. Drools a lot
5. Chokes or gags when drinking liquids
6. Chokes or gags when eating food
7. Drinks formula or is fed through a tube as the main source of nutrition
8. Eats foods that are finely chopped or blenderized
9. Eats foods primarily for oral stimulation or pleasure
II.b. How relevant is each question to you? (Eating , Chewing, and Swallowing) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant
1. Has refused to eat or does not eat by mouth
2. Has trouble chewing food
3. Takes longer than 30 minutes to eat a meal or get tube feedings
4. Drools a lot
5. Chokes or gags when drinking liquids
6. Chokes or gags when eating food
7. Drinks formula or is fed through a tube as the main source of nutrition
8. Eats foods that are finely chopped or blenderized
9. Eats foods primarily for oral stimulation or pleasure
II.c. How important is each question to you? (Eating , Chewing, and Swallowing) *
Not important
Slightly important
Fairly important
Very important
1. Has refused to eat or does not eat by mouth
2. Has trouble chewing food
3. Takes longer than 30 minutes to eat a meal or get tube feedings
4. Drools a lot
5. Chokes or gags when drinking liquids
6. Chokes or gags when eating food
7. Drinks formula or is fed through a tube as the main source of nutrition
8. Eats foods that are finely chopped or blenderized
9. Eats foods primarily for oral stimulation or pleasure
III.a. Reflux *
Never
Almost Never
Sometimes
Often
Almost Always
1. Has fluid or food coming up into her/his mouth
2. Has vomiting during or after eating
3. Wakes up at night with irritability
III.b. How relevant is each question to you? (Reflux) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant Always
1. Has fluid or food coming up into her/his mouth
2. Has vomiting during or after eating
3. Wakes up at night with irritability
III.c. How important is each question to you? (Reflux) *
Not important
Slightly important
Fairly important
Very important
1. Has fluid or food coming up into her/his mouth
2. Has vomiting during or after eating
3. Wakes up at night with irritability
IV.a. Gas and Bloating *
Never
Almost Never
Sometimes
Often
Almost Always
1. Has strong burping or belching
2. Has fullness (too much gas) in the tummy
3. Stomach gets big and hard
4. Has lots of noise in her/his tummy
5. Passes a lot of gas from her/his bottom
IV.b. How relevant is each question to you? (Gas and Bloating) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant
1. Has strong burping or belching
2. Has fullness (too much gas) in the tummy
3. Stomach gets big and hard
4. Has lots of noise in her/his tummy
5. Passes a lot of gas from her/his bottom
IV.c. How important is each question to you? (Gas and Bloating) *
Not important
Slightly important
Fairly important
Very important
1. Has strong burping or belching
2. Has fullness (too much gas) in the tummy
3. Stomach gets big and hard
4. Has lots of noise in her/his tummy
5. Passes a lot of gas from her/his bottom
V.a. Diarrhea and Constipation *
Never
Almost Never
Sometimes
Often
Almost Always
1. Has bowel movements more than 3 times daily
2. Has watery or loose stools
3. Has difficulty pushing out stools
4. Has hard stools
5. Has big stools
6. Needs laxatives to have a bowel movement
V.b. How relevant is each question to you? (Diarrhea and Constipation) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant
1. Has bowel movements more than 3 times daily
2. Has watery or loose stools
3. Has difficulty pushing out stools
4. Has hard stools
5. Has big stools
6. Needs laxatives to have a bowel movement
V.c. How important is each question to you? (Diarrhea and Constipation) *
Not important
Slightly important
Fairly important
Very important
1. Has bowel movements more than 3 times daily
2. Has watery or loose stools
3. Has difficulty pushing out stools
4. Has hard stools
5. Has big stools
6. Needs laxatives to have a bowel movement
VI.a. Personality and Mood *
Never
Almost Never
Sometimes
Often
Almost Always
1. Has been anxious
2. Has been unhappy in general
3. Has abrupt changes in mood
4. Has times when he/she is miserable
5. Has periods of irritability
VI.b. How relevant is each question to you? (Personality and Mood) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant
1. Has been anxious
2. Has been unhappy in general
3. Has abrupt changes in mood
4. Has times when he/she is miserable
5. Has periods of irritability
VI.c. How important is each question to you? (Personality and Mood) *
Not important
Slightly important
Fairly important
Very important
1. Has been anxious
2. Has been unhappy in general
3. Has abrupt changes in mood
4. Has times when he/she is miserable
5. Has periods of irritability
VII.a. Medications *
Never
Almost Never
Sometimes
Often
Almost Always
1.      Has trouble taking medications prescribed for stomach or intestinal problems
2.      Receives medication to block stomach acid (ranitidine (Zantac), lansoprazole (Prevacid), omeprazole (Prilosec), esomeprazole (Nexium))
3.      Receives medication to help the stomach and intestinal tract move (bethanechol (Urecholine), erythromycin (Eryped), metoclopramide (Reglan))
4.      Receives medication to reduce stomach or intestinal pain (dicyclomine (Bentyl), hyoscyamine (Levsin))
5.      Receives medication to reduce gas (simethicone (Gas-X))
6.      Receives medication to reduce bad bacteria in the intestines (metronidazole (Flagyl))
7.     Receives medication to increase good bacteria in the intestines (probiotics)
8.      Receives medication to increase the frequency of stooling (polyethylene glycol, lactulose, mineral oil, milk of magnesia, sennosides)
9.     Receives medication to reduce the frequency of stooling (such as loperamide (Imodium))
VII.b. How relevant is each question to you? (Medications) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant
1.      Has trouble taking medications prescribed for stomach or intestinal problems
2.      Receives medication to block stomach acid (ranitidine (Zantac), lansoprazole (Prevacid), omeprazole (Prilosec), esomeprazole (Nexium))
3.      Receives medication to help the stomach and intestinal tract move (bethanechol (Urecholine), erythromycin (Eryped), metoclopramide (Reglan))
4.      Receives medication to reduce stomach or intestinal pain (dicyclomine (Bentyl), hyoscyamine (Levsin))
5.      Receives medication to reduce gas (simethicone (Gas-X))
6.      Receives medication to reduce bad bacteria in the intestines (metronidazole (Flagyl))
7.     Receives medication to increase good bacteria in the intestines (probiotics)
8.      Receives medication to increase the frequency of stooling (polyethylene glycol, lactulose, mineral oil, milk of magnesia, sennosides)
9.     Receives medication to reduce the frequency of stooling (such as loperamide (Imodium))
VII.c. How important is each question to you? (Medications) *
Not important
Slightly important
Fairly important
Very important
1.      Has trouble taking medications prescribed for stomach or intestinal problems
2.      Receives medication to block stomach acid (ranitidine (Zantac), lansoprazole (Prevacid), omeprazole (Prilosec), esomeprazole (Nexium))
3.      Receives medication to help the stomach and intestinal tract move (bethanechol (Urecholine), erythromycin (Eryped), metoclopramide (Reglan))
4.      Receives medication to reduce stomach or intestinal pain (dicyclomine (Bentyl), hyoscyamine (Levsin))
5.      Receives medication to reduce gas (simethicone (Gas-X))
6.      Receives medication to reduce bad bacteria in the intestines (metronidazole (Flagyl))
7.     Receives medication to increase good bacteria in the intestines (probiotics)
8.      Receives medication to increase the frequency of stooling (polyethylene glycol, lactulose, mineral oil, milk of magnesia, sennosides)
9.     Receives medication to reduce the frequency of stooling (such as loperamide (Imodium))
VIII.a. Surgery *
Yes
No
1. Does your child have a gastrostomy button?
2. Does your child have a fundoplication?
3. Has your child had her/his gall bladder removed (cholecystectomy)?
4. Has your child had surgery for twisting (volvulus) or blockage (obstruction) of the bowels or stomach?
5. Does your child have an ileostomy or cecal button for constipation?
VIII.b. How relevant is each question to you? (Surgery) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant
1. Does your child have a gastrostomy button?
2. Does your child have a fundoplication?
3. Has your child had her/his gall bladder removed (cholecystectomy)?
4. Has your child had surgery for twisting (volvulus) or blockage (obstruction) of the bowels or stomach?
5. Does your child have an ileostomy or cecal button for constipation?
VIII.c. How important is each question to you? (Surgery) *
Not important
Slightly important
Fairly important
Very important
1. Does your child have a gastrostomy button?
2. Does your child have a fundoplication?
3. Has your child had her/his gall bladder removed (cholecystectomy)?
4. Has your child had surgery for twisting (volvulus) or blockage (obstruction) of the bowels or stomach?
5. Does your child have an ileostomy or cecal button for constipation?
IX.a. Parenting *
Never
Almost Never
Sometimes
Often
Almost Always
1. You are frustrated because of your child’s stomach or intestinal problems
2. You worry that your child’s stomach or intestinal problems will get worse
3. You feel that your life revolves around your child’s stomach or intestinal problems
4. You are constantly vigilant about your child’s stomach or intestinal problems
5. You have concerns about arranging suitable care (e.g. babysitting, respite) because of your child’s stomach or intestinal problems
6. You are not able to relax at home because you need to attend to your child’s stomach or intestinal problems
7. You have to make extensive preparations for your child before leaving the house because of stomach or intestinal problems
8. You worry about your child’s future because of your child’s stomach or intestinal problems
IX.b. How relevant is each question to you? (Parenting) *
Not relevant
Slightly relevant
Fairly relevant
Very relevant
1. You are frustrated because of your child’s stomach or intestinal problems
2. You worry that your child’s stomach or intestinal problems will get worse
3. You feel that your life revolves around your child’s stomach or intestinal problems
4. You are constantly vigilant about your child’s stomach or intestinal problems
5. You have concerns about arranging suitable care (e.g. babysitting, respite) because of your child’s stomach or intestinal problems
6. You are not able to relax at home because you need to attend to your child’s stomach or intestinal problems
7. You have to make extensive preparations for your child before leaving the house because of stomach or intestinal problems
8. You worry about your child’s future because of your child’s stomach or intestinal problems
IX.c. How important is each question to you? (Parenting) *
Not important
Slightly important
Fairly important
Very important
1. You are frustrated because of your child’s stomach or intestinal problems
2. You worry that your child’s stomach or intestinal problems will get worse
3. You feel that your life revolves around your child’s stomach or intestinal problems
4. You are constantly vigilant about your child’s stomach or intestinal problems
5. You have concerns about arranging suitable care (e.g. babysitting, respite) because of your child’s stomach or intestinal problems
6. You are not able to relax at home because you need to attend to your child’s stomach or intestinal problems
7. You have to make extensive preparations for your child before leaving the house because of stomach or intestinal problems
8. You worry about your child’s future because of your child’s stomach or intestinal problems
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