HEMO (M / 14-09-2006)

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HAEMO-QOL

Initials	HEMO
Birthdate	14-09-2006 (9 year(s) old)
Gender	Boy
Date for an appointment with the doctor	none
Group	Coagulation diseases EKZ

Mother (19-04-1974)

17-04-2015

Reporter	17-04-2015
This list has been completed by:	Mother
Family	17-04-2015
What is your date of birth?	19-04-1974
What is your marital status?	Single
What is the country of birth of your (ex) partner (the father or mother of your child)?	The Netherlands
How many children do you have?	3
Optional explanation:	efwefewf
How many children are currently living with you and how old are they?	There is / are 3 child(ren) younger than 4 years old
What is the current work situation for yourself? (more than one answer possible)	Sick leave
Sports club	17-04-2015
Is your child involved in a sports club? (such as soccer, judo, horseback riding)	No

Child

24-04-2015
14-04-2016

Physical	24-04-2015	14-04-2016
It is hard for me to walk more than one block	Never	Almost never
It is hard for me to run	Sometimes	Sometimes
It is hard for me to do sports activity or exercise	Almost never	Often
It is hard for me to lift something heavy	Sometimes	Almost never
It is hard for me to take a bath or shower by myself	Sometimes	Never
It is hard for me to do chores around the house	Often	Never
I hurt or ache	Almost never	Sometimes
I have low energy	Almost never	Almost never
Emotional	24-04-2015	14-04-2016
I feel afraid or scared	Never	Almost never
I feel sad or blue	Almost never	Almost never
I feel angry	Sometimes	Sometimes
I have trouble sleeping	Never	Almost never
I worry about what will happen to me	Never	Almost never
Social	24-04-2015	14-04-2016
I have trouble getting along with other kids	Never	Never
Other kids do not want to be my friend	Never	Never
Other kids tease me	Never	Never
I cannot do things that other kids my age can do	Never	Sometimes
It is hard to keep up when I play with other kids	Never	Almost never
School	24-04-2015	14-04-2016
It is hard to pay attention in class	Never	Never
I forget things	Never	Never
I have trouble keeping up with my schoolwork	Never	Almost never
I miss school because of not feeling well	Never	Sometimes
I miss school to go to the doctor or hospital	Never	Sometimes

Child

Mother (19-04-1974)

17-04-2015

Reporter	17-04-2015
This list has been completed by:	Mother
Prosocial	17-04-2015
Considerate of other people's feelings	Somewhat true
Shares readily with other children (treats, toys, pencils etc.)	Somewhat true
Helpful if someone is hurt, upset or feeling ill	Not true
Kind to younger children	Somewhat true
Often volunteers to help others (parents, teachers, other children)	Somewhat true
Hyperactivity	17-04-2015
Restless, overactive, cannot stay still for long	Certainly true
Constantly fidgeting or squirming	Not true
Easily distracted, concentration wanders	Somewhat true
Thinks things out before acting	Somewhat true
Sees tasks through to the end, good attention span	Not true
Emotional	17-04-2015
Often complains of headaches, stomach-aches or sickness	Certainly true
Many worries, often seems worried	Somewhat true
Often unhappy, down-hearted or tearful	Somewhat true
Nervous or clingy in new situations, easily loses confidence	Not true
Many fears, easily scared	Not true
Behavior	17-04-2015
Often has temper tantrums or hot tempers	Somewhat true
Generally obedient, usually does what adults request	Certainly true
Often fights with other children or bullies them	Not true
Often lies or cheats	Certainly true
Steals from home, school or elsewhere	Somewhat true
Peers	17-04-2015
Rather solitary, tends to play alone	Not true
Has at least one good friend	Not true
Generally liked by other children	Not true
Picked on or bullied by other children	Not true
Gets on better with adults than with other children	Somewhat true
Comments	17-04-2015
Do you have any other comments or concerns?	wefwefwefew
Difficulties	17-04-2015
Overall, do you think that your child has difficulties in one or more of the following areas: emotions, concentration, behaviour or being able to get on with other people?	Yes, minor difficulties
How long have these difficulties been present?	1-5 months
Do the difficulties upset or distress your child?	Only a little
Home life	Not at all
Friendships	A great deal
Classroom learning	Only a little
Leisure activities	A great deal
Do the difficulties put a burden on you or the family as a whole?	Only a little

Mother (19-04-1974)

Child

14-04-2016

School	14-04-2016
What type of education are you currently in?	Regular primary school
In what grade are you?	7
Have you ever had to double a grade?	No
How many schooldays have you missed in the past three months?	5

Child

14-04-2016

Questions	14-04-2016
Is there anything you would like to ask/tell the person with whom you have an appointment?	No

Child

14-04-2016

Fysiek	14-04-2016
... deden mijn zwellingen pijn	zelden
... had ik gewrichtspijn	af en toe
... deed het pijn als ik me bewoog	af en toe
... was ik bang te gaan bloeden	vaak
Gevoelens	14-04-2016
... was ik verdrietig vanwege mijn hemofilie	af en toe
... was mijn hemofilie een last (een echt probleem) voor me	zelden
... was ik boos omdat ik hemofilie heb	af en toe
... was ik eenzaam vanwege mijn hemofilie	af en toe
Houding	14-04-2016
... was ik jaloers op gezonde leeftijdgenoten	vaak
... was ik lichamelijk zwakker dan andere jongens	af en toe
... voelde ik me net zo goed als mijn leeftijdgenoten	zelden
... was ik tevreden over mijn lichaam	zelden
Family	14-04-2016
... beschermde mijn Mother me te veel	af en toe
... hadden mijn ouders kritiek op me wanneer ik me had bezeerd	vaak
... mocht ik van mijn ouders een aantal dingen niet doen omdat ik hemofilie heb	af en toe
... had ik het idee dat ik mijn familie problemen bezorgde omdat ik hemofilie heb	zelden
Vrienden	14-04-2016
... gaf mijn beste vriend erom hoe ik me voelde	zelden
... had ik een 'beste vriend' met wie ik een nauwe band had	zelden
... zorgden mijn vrienden voor me toen ik me slecht voelde	af en toe
Anderen	14-04-2016
... voelde ik me anders dan anderen omdat ik hemofilie heb	af en toe
... werd ik door andere kinderen geplaagd omdat ik hemofilie heb	zelden
... gingen de mensen zich anders tegenover me gedragen omdat ik hemofilie heb	af en toe
... voelde ik me buitengesloten wanneer anderen samen dingen deden	vaak
Sport	14-04-2016
... kon ik mijn favoriete sport niet beoefenen vanwege mijn hemofilie	zelden
... moest ik meer binnen blijven dan de andere kinderen vanwege mijn hemofilie	af en toe
... mocht ik geen sport doen zoals skaten of voetbal	zelden
... kon ik net zoveel sporten als de andere kinderen	zelden
Omgang	14-04-2016
... had ik mijn klachten die ontstaan vanwege mijn hemofilie onder controle	af en toe
... maakte hemofilie gewoon deel uit van mijn leven	vaak
... voelde ik me gezond ondanks dat ik hemofilie heb	vaak
... aanvaardde ik het feit dat ik hemofilie heb	vaak
Behandeling	14-04-2016
... was de behandeling die ik kreeg goed	vaak
... vond ik het niet leuk om naar het hemofiliecentrum te gaan	af en toe
... ergerde ik me aan het prikken	af en toe
... ergerde ik me aan het feit dat het prikken zoveel tijd in beslag neemt	vaak

Reporter	17-04-2015
This list has been completed by:	Mother
Gesprek	17-04-2015
Would you like to talk to a professional about your situation?	Yes
Please explain:	fewfew
Questions	17-04-2015
Do you feel you receive enough support from people around you?	No
Do people often react to your situation with a lack of understanding?	No
Do you have a (chronic) disease?	Yes
How do you get along with the medical staff?	Satifactory
Do you have any further comments/questions about this questionnaire or anything you would like to add about your responses?	fewfewf

Reporter	17-04-2015
This list has been completed by:	Mother
Praktisch	17-04-2015
Housing	Yes
Work/study	Yes
Finances/insurance	Yes
Housekeeping	Yes
Transport	No
Child care	Yes
Leisure activities/relaxing	No
Sociaal	17-04-2015
Dealing with (ex)partner	No
Dealing with family	No
Dealing with friends	Yes
Dealing with your child(ren)	No
Emotioneel	17-04-2015
Keeping emotions under control	Yes
Self-confidence	No
Fears	Yes
Depression	Yes
Feeling tense or nervous	No
Loneliness	Yes
Feelings of guilt	Yes
Use of substances (e.g. use of alcohol, drugs, and/or medication)	Yes
Intrusive/recurrent thoughts about a specific event	Yes
Lichamelijk	17-04-2015
Eating	Yes
Weight	No
Sleep	No
Fatigue	No
Out of shape/condition	Yes
Pain	Yes
Sexuality	Yes
Cognitief	17-04-2015
Concentration	Yes
Memory	Yes
Opvoeding	17-04-2015
Making contact with your child	Yes
Caring for your child	No
Feeding your child	No
Development of your child	Yes
Following advice about treatment/Giving your child his/her medication	Yes
Your child’s sleeping	Yes
Behavior/crying of your child	Yes