Protocol - Scoliosis - Quality of Life

Description

The Pediatric Outcomes Data Collection Instrument (PODCI) was developed by the American Academy of Orthopaedic Surgeons®, Pediatric Orthopaedic Society of North America, American Academy of Pediatrics, and Shriners Hospitals. The protocol here is based on Version 2.0 of the PODCI which was revised, renumbered, and reformatted in August 2005.

The PODCI consists of 86 items and is designed to collect data regarding an individual’s general health and problems related to bone and muscle conditions. This instrument is completed by parents (or caregivers) of children aged 2-10 years old.

Note: this protocol applies to the three major types of scoliosis; however, only congenital and syndromic scoliosis apply to rare genetic conditions.

Specific Instructions

The physician should complete this form with diagnoses and procedures prior to administering the quality-of-life (QOL) questionnaire.

FOR OFFICE USE ONLY

Clinic ID ___________________ First six letter of patient’s last name _____________

Physician ID ________________ Office Chart # ______________________________

	Diagnosis & ICD-9 Code*	Procedure & CPT Code	CPT Date	Side of body procedure was performed on:
Primary DX	DX	Tx		□ Right	□ Left
Primary DX	ICD-9	ICD-9		□ Both	□ N/A
Secondary DX	DX	Tx		□ Right	□ Left
Secondary DX	ICD-9	ICD-9		□ Both	□ N/A
Secondary DX	DX	Tx		□ Right	□ Left
Secondary DX	ICD-9	ICD-9		□ Both	□ N/A
Secondary DX	DX	Tx		□ Right	□ Left
Secondary DX	ICD-9	ICD-9		□ Both	□ N/A
Secondary DX	DX	Tx		□ Right	□ Left
Secondary DX	ICD-9	ICD-9		□ Both	□ N/A

The following instructions appear at the beginning of the questionnaire.

Today’s Date / /

Thank you for completing this questionnaire!

This questionnaire will help us to better understand your general health and any problems related to bone and muscle conditions.

Your completion of this questionnaire is completely voluntary and your responses will be held in the strictest confidence.

Please answer every question. Some questions may look like others, but each one is different.

There are no right or wrong answers. If you are not sure how to answer a question, just give the best answer you can. You can make comments in the margin. We do read all your comments, so feel free to make as many as you wish.

Your Child’s Birth Date / /

Your Child’s Social Security Number* ___________________

Your Social Security Number* ______________________

*Personal identifying information that may not need to be collected.

Availability

Available

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Protocol

Some kind of problems can make it hard to do many activities, such as eating, bathing, school work, and playing with friends. We would like to find out how your child is doing. (Circle one response on each line.)

During the last week was it easy or hard for your child to:

1.	Lift heavy books?	Easy 1	A little hard 2	Very hard 3	Can’t do at all 4	Too young for this activity 5
2.	Pour a half gallon of milk?	1	2	3	4	5
3.	Open a jar that has been opened before?	1	2	3	4	5
4.	Use a fork and spoon?	1	2	3	4	5
5.	Comb his/her hair?	1	2	3	4	5
6.	Button buttons?	1	2	3	4	5
7.	Put on his/her coat?	1	2	3	4	5
8.	Write with a pencil?	1	2	3	4	5

9. On average, over the last 12 months, how often did your child miss school (preschool, day care, camp, etc.) because of his/her health?

1.[ ]Rarely

2.[ ]Once a month

3.[ ]Two or three times a month

4.[ ]Once a week

5.[ ]More than once a week

6.[ ]Does not attend school, etc.

During the last week how happy has your child been with: (Circle one response on each line.)

		Very happy	Somewhat happy	Not sure	Somewhat unhappy	Very unhappy	Child is too young
10.	How he/she looks?	1	2	3	4	5	6
11.	His/her body?	1	2	3	4	5	6
12.	What clothes or shoes he/she can wear?	1	2	3	4	5	6
13.	His/her ability to do the same things his/her friends do?	1	2	3	4	5	6
14.	His/her health in general?	1	2	3	4	5	6

During the last week, how much of the time:

(Circle one response on each line.)

		Most of the time	Some of the time	A little of the time	None of the time
15.	Did your child feel sick and tired?	1	2	3	4
16.	Were your child full of pep and energy?	1	2	3	4
17.	Did pain or discomfort interfere with your child’s activities?	1	2	3	4

During the last week, has it been easy or hard for your child to:

(Circle one response on each line.)

		Easy	A little hard	Very hard	Can’t do at all	Too young for this activity
18.	Run short distances?	1	2	3	4	5
19.	Bicycle or tricycle?	1	2	3	4	5
20.	Climb three flights of stairs?	1	2	3	4	5
21.	Climb one flight of stairs?	1	2	3	4	5
22.	Walk more than a mile?	1	2	3	4	5
23.	Walk three blocks?	1	2	3	4	5
24.	Walk one block?	1	2	3	4	5
25.	Get on and off a bus?	1	2	3	4	5

26. How often does your child need help from another person for walking and climbing? (Circle one response.)

1[ ]Never

2[ ]Sometimes

3[ ]About half the time

4[ ]Often

5[ ]All the time

27. How often does your child use assistive devices (such as braces, crutches, or wheelchair) for walking and climbing? (Circle one response.)

1[ ]Never

2[ ]Sometimes

3[ ]About half the time

4[ ]Often

5[ ]All the time

During the last week, has it been easy or hard for your child to:

(Circle one response on each line.)

		Easy	A little hard	Very hard	Can’t do at all	Too young for this activity
28.	Stand while washing his/her hands and face at a sink?	1	2	3	4	5
29.	Sit in a regular chair without holding on?	1	2	3	4	5
30.	Get on and off a toilet or chair?	1	2	3	4	5
31.	Get in and out of bed?	1	2	3	4	5
32.	Turn door knobs?	1	2	3	4	5
33.	Bend over from a standing position and pick up something off the floor?	1	2	3	4	5

34. How often does your child need help from another person for sitting and standing? (Circle one response.)

1[ ]Never

2[ ]Sometimes

3[ ]About half the time

4[ ]Often

5[ ]All the time

35. How often does your child use assistive devices (such as braces, crutches, or wheelchair) for sitting and standing? (Circle one response.)

1[ ]Never

2[ ]Sometimes

3[ ]About half the time

4[ ]Often

5[ ]All the time

36. Can your child participate in recreational outdoor activities with other children the same age? (For example: bicycling, tricycling, skating, hiking, jogging) (Circle one response.)

1[ ]Yes, easily

2[ ]Yes, but a little hard

3[ ]Yes, but very hard

4[ ]No

If you answered "no" to Question 36 above, was your child’s activity limited by: (Circle yes to all that apply)

		Yes
37.	Pain?	1
38.	General Health?	1
39.	Doctor or parent instructions?	1
40.	Fear the other kids won’t like him/her?	1
41.	Dislike of recreational outdoor activities?	1
42.	Too young?	1
43.	Activity not in season?	1

44. Can your child participate in pickup games or sports with other children the same age? (For example: tag, dodge ball, basketball, soccer, catch, jump rope, touch football, hop scotch)

(Circle one response.)

1[ ]Yes, easily

2[ ]Yes, but a little hard

3[ ]Yes, but very hard

4[ ]No

If you answered "no" to Question 44 above, was your child’s activity limited by: (Circle yes to all that apply)

		Yes
45.	Pain?	1
46.	General Health?	1
47.	Doctor or parent instructions?	1
48.	Fear the other kids won’t like him/her?	1
49.	Dislike of pickup games or sports?	1
50.	Too young?	1
51.	Activity not in season?	1

52. Can your child participate in competitive level sports with other children the same age? (For example: hockey, basketball, soccer, football, baseball, swimming, running [track or cross country], gymnastics, or dance) (Circle one response.)

1[ ]Yes, easily

2[ ]Yes, but a little hard

3[ ]Yes, but very hard

4[ ]No

If you answered "no" to Question 52 above, was your child’s activity limited by: (Circle yes to all that apply)

		Yes
53.	Pain?	1
54.	General Health?	1
55.	Doctor or parent instructions?	1
56.	Fear the other kids won’t like him/her?	1
57.	Dislike of pickup games or sports?	1
58.	Too young?	1
59.	Activity not in season?	1

60. How often in the last week did your child get together and do things with friends? (Circle one response.)

1[ ]Often

2[ ]Sometimes

3[ ]Never or rarely

If you answered "sometimes" or "never or rarely" to Question 60 above, was your child’s activity limited by: (Circle yes to all that apply)

		Yes
61.	Pain?	1
62.	General Health?	1
63.	Doctor or parent instructions?	1
64.	Fear the other kids won’t like him/her?	1
65.	Friends not around?	1

66. How often in the last week did your child participate in gym/recess? (Circle one response.)

1[ ]Often

2[ ]Sometimes

3[ ]Never or rarely

4[ ]No gym or recess

If you answered "sometimes" or "never or rarely" to Question 63 above, was your child’s activity limited by: (Circle yes to all that apply)

		Yes
67.	Pain?	1
68.	General Health?	1
69.	Doctor or parent instructions?	1
70.	Fear the other kids won’t like him/her?	1
71.	Dislike of gym/recess?	1
72.	School not in session?	1
73.	Does not attend school?	1

74. Is it easy or hard for your child to make friends with children his/her own age? (Circle one response.)

1[ ]Usually easy

2[ ]Sometimes easy

3[ ]Sometimes hard

4[ ]Usually hard

75. How much pain has your child had during the last week? (Circle one response.)

1[ ]None

2[ ]Very mild

3[ ]Mild

4[ ]Moderate

5[ ]Severe

6[ ]Very severe

76. During the last week, how much did pain interfere with your child’s normal activities (including at home, outside of the home, and at school)? (Circle one response.)

1[ ]Not at all

2[ ]A little bit

3[ ]Moderately

4[ ]Quite a bit

5[ ]Extremely

What expectations do you have for your child’s treatment?
As a result of my child’s treatment, I expect my child:

(Circle one response on each line.)

		Definitely yes	Probably yes	Not sure	Probably not	Definitely not
77.	To have pain relief.	1	2	3	4	5
78.	To look better.	1	2	3	4	5
79.	To feel better about himself/herself.	1	2	3	4	5
80.	To sleep more comfortably.	1	2	3	4	5
81.	To be able to do activities at home.	1	2	3	4	5
82.	To be able to do more at school.	1	2	3	4	5
83.	To be able to do more play or recreational activities (biking, walking, doing things with friends).	1	2	3	4	5
84.	To be able to do more sports.	1	2	3	4	5
85.	To be free from pain or disability as an adult.	1	2	3	4	5

86. If your child had to spend the rest of his/her life with his/her bone and muscle condition as it is right now, how would you feel about it? (Circle one response.)

1[ ]Very satisfied

2[ ]Somewhat satisfied

3[ ]Neutral

4[ ]Somewhat dissatisfied

5[ ]Very dissatisfied

Personnel and Training Required

None

Equipment Needs

None

Requirements

Requirement Category	Required
Major equipment	No
Specialized training	No
Specialized requirements for biospecimen collection	No
Average time of greater than 15 minutes in an unaffected individual	Yes

Mode of Administration

Proxy-administered questionnaire

Lifestage

Toddler, Child

Participants

Parent or guardian for children 2-10 years old

Selection Rationale

The Rare Genetic Conditions Working Group selected the Pediatric Outcomes Data Collection Instrument (PODCI) because of its relevance to scoliosis and validity for many orthopaedic conditions.

Language

English

Standards

Standard	Name	ID	Source
Human Phenotype Ontology	Scoliosis	HP:0002650	HPO
caDSR Form	PhenX PX221501 - Scoliosis Quality Of Life	6202235	caDSR Form

Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Pediatric Outcomes Data Collection Instrument (PODCI), v. 2.0,Parent/Child Outcomes Instrument, 2005

Source

American Academy of Orthopaedic Surgeons®, Pediatric Orthopaedic Society of North America, American Academy of Pediatrics, Shriners Hospitals. (2005). Version 2.0 Pediatrics-Parent/Child Outcomes Instrument. American Academy of Orthopaedic Surgeons (AAOS) website: http://www.aaos.org/research/outcomes/outcomes_peds.asp

General References

Allen, D. D., Gorton, G. E., Oeffinger, D. J., Tylkowski, C., Tucker, C. A., & Haley, S. M. (2008). Analysis of the Pediatric Outcomes Data Collection Instrument (PODCI) in ambulatory children with cerebral palsy using confirmatory factor analysis and item response theory methods. Journal of Pediatric Orthopedics, 28(2), 192-198.

Kunkel, S., Eismann, E., & Cornwall, R. (2011). Utility of the pediatric outcomes data collection instrument for assessing acute hand and wrist injuries in children. Journal of Pediatric Orthopaedics, 31(7), 767-772.

Protocol ID

221501

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX221501_Scoliosis_QOL_Activity_Limited_ByCompetiviteSports
	PX221501770200	If you answered "no" to Question 52 above, more was your child's activity limited by: (Circle yes to all that apply) show less	N/A
PX221501_Scoliosis_QOL_Activity_Limited_ByOutdoor
	PX221501750200	If you answered "no" to Question 36 above, more was your child's activity limited by: (Circle yes to all that apply) show less	N/A
PX221501_Scoliosis_QOL_Activity_Limited_BySports
	PX221501760200	If you answered "no" to Question 44 above, more was your child's activity limited by: (Circle yes to all that apply) show less	N/A
PX221501_Scoliosis_QOL_Child's_DOB
	PX221501370000	Your Child's Birth Date	Variable Mapping
PX221501_Scoliosis_QOL_Child's_SSN
	PX221501380000	Your Child's Social Security Number	N/A
PX221501_Scoliosis_QOL_Child_Need_Help
	PX221501650000	How often does your child need help from more another person for walking and climbing? (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_Child_Use_AssistiveDevices
	PX221501660000	How often does your child use assistive more devices (such as braces, crutches, or wheelchair) for walking and climbing? (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_Clinic_ID
	PX221501020000	Clinic ID of Patient	N/A
PX221501_Scoliosis_QOL_CompetitiveLevel_Sports
	PX221501770100	Can your child participate in competitive more level sports with other children the same age? (For example: hockey, basketball, soccer, football, baseball, swimming, running [track or cross country], gymnastics, or dance) (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_Easy_MakeFriends
	PX221501800000	Is it easy or hard for your child to make more friends with children his/her own age? (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_FirstSix_Last_Name
	PX221501040000	First sitx letters of patient's last name	N/A
PX221501_Scoliosis_QOL_Frequency_GetTogether_LimitedBy
	PX221501780200	If you answered "sometimes" or "never or more rarely" to Question 60 above, was your child's activity limited by: (Circle yes to all that apply) show less	N/A
PX221501_Scoliosis_QOL_GetTogether_Friends
	PX221501780100	How often in the last week did your child more get together and do things with friends? (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_Help_SittingStanding
	PX221501730000	How often does your child need help from more another person for sitting and standing? show less	N/A
PX221501_Scoliosis_QOL_Last12Mo_MissSchool
	PX221501480000	On average, over the last 12 months, how more often did your child miss school (preschool, day care, camp, etc.) because of his/her health? show less	N/A
PX221501_Scoliosis_QOL_LastWeek_FullEnergy
	PX221501550000	During the last week, how much of the time more were your child full of pep and energy? show less	N/A
PX221501_Scoliosis_QOL_LastWeek_GymRecess
	PX221501790100	How often in the last week did your child more participate in gym/recess? (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_LastWeek_Pain
	PX221501810000	How much pain has your child had during the more last week? (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_LastWeek_PainInterfere
	PX221501820000	During the last week, how much did pain more interfere with your child's normal activities (including at home, outside of the home, and at school)? (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_Last_Week_1FlightStairs
	PX221501600000	During the last week, has it been easy or more hard for your child to climb one flight of stairs? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_3FlightsStairs
	PX221501590000	During the last week, has it been easy or more hard for your child to climb three flights of stairs? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_BendOver
	PX221501720000	During the last week, has it been easy or more hard for your child to bend over from a standing position and pick up something off the floor? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_BicycleTricycle
	PX221501580000	During the last week, has it been easy or more hard for your child to bicycle or tricycle? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_Buttons
	PX221501450000	During the last week was it easy or hard for more your child to button buttons? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_CombHair
	PX221501440000	During the last week was it easy or hard for more your child to comb his/her hair? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_ForkSpoon
	PX221501430000	During the last week was it easy or hard for more your child to use a fork and spoon? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_GetOnOffBus
	PX221501640000	During the last week, has it been easy or more hard for your child to get on and off a bus? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_HappyAbility
	PX221501520000	During the last week how happy has your more child been with his/her ability to do the same things his/her friends do? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_HappyBody
	PX221501500000	During the last week how happy has your more child been with his/her body? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_HappyClothes
	PX221501510000	During the last week how happy has your more child been with what clothes or shoes he/she can wear? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_HappyHealth
	PX221501530000	During the last week how happy has your more child been with his/her health in general? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_HappYLooks
	PX221501490000	During the last week how happy has your more child been with how he/she looks? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_InOutBed
	PX221501700000	During the last week, has it been easy or more hard for your child to get in and out of bed? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_LiftBooks
	PX221501400000	During the last week was it easy or hard for more your child to lift heavy books? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_OnOffToilet
	PX221501690000	During the last week, has it been easy or more hard for your child to get on and off a toilet or chair? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_OpenJar
	PX221501420000	During the last week was it easy or hard for more your child to Open a jar that has been opened before? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_PainInterfere
	PX221501560000	During the last week, how much of the time more did pain or discomfort interfere with your child's activities? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_PourMilk
	PX221501410000	During the last week was it easy or hard for more your child to Pour a half gallon of milk? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_PutOn_Coat
	PX221501460000	During the last week was it easy or hard for more your child to put on his/her coat? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_Run
	PX221501570000	During the last week, has it been easy or more hard for your child to run short distances? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_SickTIred
	PX221501540000	During the last week, how much of the time more did your child feel sick and tired? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_SitChair
	PX221501680000	During the last week, has it been easy or more hard for your child to sit in a regular chair without holding on? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_StandSink
	PX221501670000	During the last week, has it been easy or more hard for your child to stand while washing his/her hands and face at a sink? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_TurnDoorKnobs
	PX221501710000	During the last week, has it been easy or more hard for your child to turn door knobs? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_WalkMile
	PX221501610000	During the last week, has it been easy or more hard for your child to walk more than a mile? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_WalkOneBlock
	PX221501630000	During the last week, has it been easy or more hard for your child to walk one block? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_WalkThreeBlocks
	PX221501620000	During the last week, has it been easy or more hard for your child to walk three blocks? show less	N/A
PX221501_Scoliosis_QOL_Last_Week_WritePencil
	PX221501470000	During the last week was it easy or hard for more your child to write with a pencil? show less	N/A
PX221501_Scoliosis_QOL_LimitedBY_GymRecess
	PX221501790200	If you answered "sometimes" or "never or more rarely" to Question 63 above, was your child's activity limited by: (Circle yes to all that apply) show less	N/A
PX221501_Scoliosis_QOL_NoChangeDX_HowYouFeel
	PX221501920000	If your child had to spend the rest of more his/her life with his/her bone and muscle condition as it is right now, how would you feel about it? show less	N/A
PX221501_Scoliosis_QOL_Office_Chart#
	PX221501050000	Office Chart #	N/A
PX221501_Scoliosis_QOL_Parent_SSN
	PX221501390000	Your Social Security Number	N/A
PX221501_Scoliosis_QOL_Physician_ID
	PX221501030000	Physician ID	N/A
PX221501_Scoliosis_QOL_PIckupGames_Sports
	PX221501760100	Can your child participate in pickup games more or sports with other children the same age? (For example: tag, dodge ball, basketball, soccer, catch, jump rope, touch football, hop scotch) (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_PrimaryDX_CPT_Date
	PX221501100000	Primary DX - CPT Date	N/A
PX221501_Scoliosis_QOL_PrimaryDX_DXCode
	PX221501060000	Primary DX - DX Code	N/A
PX221501_Scoliosis_QOL_PrimaryDX_ICD9
	PX221501070000	Primary DX - ICD-9 Code	N/A
PX221501_Scoliosis_QOL_PrimaryDX_Procedure_BodySite
	PX221501110000	Primary DX - Side of body procedure was more performed on: Right, Left, Both, N/A show less	N/A
PX221501_Scoliosis_QOL_PrimaryDX_TXProcedureCPT_Code
	PX221501080000	Primary DX - TX Procedure Code	N/A
PX221501_Scoliosis_QOL_PrimaryDX_TXProcedureICD9_Code
	PX221501090000	Primary DX - CPT Code	N/A
PX221501_Scoliosis_QOL_Recreational_OutdoorActivities
	PX221501750100	Can your child participate in recreational more outdoor activities with other children the same age? (For example: bicycling, tricycling, skating, hiking, jogging) (Circle one response.) show less	N/A
PX221501_Scoliosis_QOL_SecondarDX1_DXCode
	PX221501120000	Secondary DX 1 - DX Code	N/A
PX221501_Scoliosis_QOL_SecondarDX1_ICD9
	PX221501130000	Secondary DX 1- ICD-9 Code	N/A
PX221501_Scoliosis_QOL_SecondarDX1_Procedure_BodySite
	PX221501170000	Secondary DX1 - Side of body procedure was more performed on: Right, Left, Both, N/A show less	N/A
PX221501_Scoliosis_QOL_SecondarDX2_DXCode
	PX221501180000	Secondary DX 2 - DX Code	N/A
PX221501_Scoliosis_QOL_SecondarDX2_ICD9
	PX221501190000	Secondary DX 2- ICD-9 Code	N/A
PX221501_Scoliosis_QOL_SecondarDX2_Procedure_BodySite
	PX221501230000	Secondary DX2 - Side of body procedure was more performed on: Right, Left, Both, N/A show less	N/A
PX221501_Scoliosis_QOL_SecondarDX3_DXCode
	PX221501240000	Secondary DX 3 - DX Code	N/A
PX221501_Scoliosis_QOL_SecondarDX3_ICD9
	PX221501250000	Secondary DX 3- ICD-9 Code	N/A
PX221501_Scoliosis_QOL_SecondarDX3_Procedure_BodySite
	PX221501290000	Secondary DX 3 - Side of body procedure was more performed on: Right, Left, Both, N/A show less	N/A
PX221501_Scoliosis_QOL_SecondarDX4_DXCode
	PX221501300000	Secondary DX 4- DX Code	N/A
PX221501_Scoliosis_QOL_SecondarDX4_ICD9
	PX221501310000	Secondary DX 4- ICD-9 Code	N/A
PX221501_Scoliosis_QOL_SecondarDX4_Procedure_BodySite
	PX221501350000	Secondary DX 4 - Side of body procedure was more performed on: Right, Left, Both, N/A show less	N/A
PX221501_Scoliosis_QOL_SecondaryDX1_CPT_Date
	PX221501160000	Secondary DX 1 - CPT Date	N/A
PX221501_Scoliosis_QOL_SecondaryDX1_TXProcedureCPT_Code
	PX221501140000	Secondary DX 1- TX Procedure Code	N/A
PX221501_Scoliosis_QOL_SecondaryDX1_TXProcedureICD9_Code
	PX221501150000	Secondary DX 1 - CPT Code	N/A
PX221501_Scoliosis_QOL_SecondaryDX2_CPT_Date
	PX221501220000	Secondary DX 2- CPT Date	N/A
PX221501_Scoliosis_QOL_SecondaryDX2_TXProcedureCPT_Code
	PX221501200000	Secondary DX 2- TX Procedure Code	N/A
PX221501_Scoliosis_QOL_SecondaryDX2_TXProcedureICD9_Code
	PX221501210000	Secondary DX 2 - CPT Code	N/A
PX221501_Scoliosis_QOL_SecondaryDX3_CPT_Date
	PX221501280000	Secondary DX 3 - CPT Date	N/A
PX221501_Scoliosis_QOL_SecondaryDX3_TXProcedureCPT_Code
	PX221501260000	Secondary DX 3- TX Procedure Code	N/A
PX221501_Scoliosis_QOL_SecondaryDX3_TXProcedureICD9_Code
	PX221501270000	Secondary DX 3 - CPT Code	N/A
PX221501_Scoliosis_QOL_SecondaryDX4_CPT_Date
	PX221501340000	Secondary DX 4 - CPT Date	N/A
PX221501_Scoliosis_QOL_SecondaryDX4_TXProcedureCPT_Code
	PX221501320000	Secondary DX 4- TX Procedure Code	N/A
PX221501_Scoliosis_QOL_SecondaryDX4_TXProcedureICD9_Code
	PX221501330000	Secondary DX 4- CPT Code	N/A
PX221501_Scoliosis_QOL_Today's_Date
	PX221501360000	Today's Date	Variable Mapping
PX221501_Scoliosis_QOL_TXExpectations_ActivitiesHome
	PX221501870000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child to be able to do activities at home. show less	N/A
PX221501_Scoliosis_QOL_TXExpectations_DoMore_Play
	PX221501890000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child To be able to do more play or recreational activities (biking, walking, doing things with friends). show less	N/A
PX221501_Scoliosis_QOL_TXExpectations_DoMore_School
	PX221501880000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child to be able to do more at school. show less	N/A
PX221501_Scoliosis_QOL_TXExpectations_DoMore_Sports
	PX221501900000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child to be able to do more sports. show less	N/A
PX221501_Scoliosis_QOL_TXExpectations_FeelBetterSelf
	PX221501850000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child to feel better about himself/herself. show less	N/A
PX221501_Scoliosis_QOL_TXExpectations_FreeofPain_NoDisabilityAdult
	PX221501910000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child to be free from pain or disability as an adult. show less	N/A
PX221501_Scoliosis_QOL_TXExpectations_LookBetter
	PX221501840000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child to look better. show less	N/A
PX221501_Scoliosis_QOL_TXExpectations_PainRelief
	PX221501830000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child to have pain relief. show less	N/A
PX221501_Scoliosis_QOL_TXExpectations_Sleep
	PX221501860000	What expectations do you have for your more child's treatment? As a result of my child's treatment, I expect my child to sleep more comfrotably. show less	N/A
PX221501_Scoliosis_QOL_Use_AssistiveDevices_SitStand
	PX221501740000	. How often does your child use assistive more devices (such as braces, crutches, or wheelchair) for sitting and standing? show less	N/A

Rare Genetic Conditions

Measure Name

Scoliosis - Quality of Life

Release Date

April 30, 2015

Definition

Scoliosis is a spine deformity that can be categorized into three major types: congenital, syndromic, and idiopathic. Individuals can have various medical and/or quality-of-life (QoL) implications, depending on the type and severity of their scoliosis.

Purpose

This measure can be used to evaluate the impact of scoliosis on an individual’s quality of life (QOL). This self-reported information is beneficial to evaluate the severity of scoliosis and how it influences a person’s QOL over time.

Keywords

scoliosis, growth, height, Developmental Delay, adolescent, pain, pediatric, short stature, Pediatric Outcomes Data Collection Instrument, PODCI, quality of life, QOL

Measure Protocols

Protocol ID	Protocol Name
221501	Scoliosis - Quality of Life

Publications

There are no publications listed for this protocol.

Mapping for PX221501_Scoliosis_QOL_Child's_DOB

dbGAP Study	dbGAP Variable	dbGAP Variable Description
CARDIA Cohort	phv00117108	DATE OF BIRTH - 1ST CHILD
CARDIA Cohort	phv00117111	DATE OF BIRTH - 2ND CHILD
CARDIA Cohort	phv00117114	DATE OF BIRTH - 3RD CHILD
CARDIA Cohort	phv00117117	DATE OF BIRTH - 4TH CHILD
CARDIA Cohort	phv00117120	DATE OF BIRTH - 5TH CHILD
CARDIA Cohort	phv00117123	DATE OF BIRTH - 6TH CHILD
CARDIA Cohort	phv00117126	DATE OF BIRTH - 7TH CHILD
Cardiovascular Health Study (CHS) Cohort	phv00110441	AGE OF CHILD 01
Cardiovascular Health Study (CHS) Cohort	phv00110444	AGE OF CHILD 02
Cardiovascular Health Study (CHS) Cohort	phv00110447	AGE OF CHILD 03
Cardiovascular Health Study (CHS) Cohort	phv00110450	AGE OF CHILD 04
Cardiovascular Health Study (CHS) Cohort	phv00110453	AGE OF CHILD 05
Cardiovascular Health Study (CHS) Cohort	phv00110456	AGE OF CHILD 06

Mapping for PX221501_Scoliosis_QOL_Today's_Date

dbGAP Study	dbGAP Variable	dbGAP Variable Description
CARDIA Cohort	phv00119634	DATE OF EXAM 2
CARDIA Cohort	phv00117591	DATE OF EXAM 4
CARDIA Cohort	phv00117590	DATE OF EXAM 3
CARDIA Cohort	phv00117589	DATE OF EXAM 2
CARDIA Cohort	phv00116541	DATE OF EXAM
CARDIA Cohort	phv00116389	DATE OF EXAM 3
CARDIA Cohort	phv00116388	DATE OF EXAM 2
CARDIA Cohort	phv00115318	DATE OF EXAM
CARDIA Cohort	phv00115117	DATE OF EXAM 2
CARDIA Cohort	phv00118300	DATE OF EXAM
CARDIA Cohort	phv00119257	DATE OF EXAM
CARDIA Cohort	phv00119628	DATE OF EXAM 5
CARDIA Cohort	phv00119635	DATE OF EXAM 3
CARDIA Cohort	phv00119636	DATE OF EXAM 4
CARDIA Cohort	phv00119727	DATE OF EXAM
CARDIA Cohort	phv00119780	DATE OF EXAM-FORM 5
CARDIA Cohort	phv00120011	DATE OF EXAM-FORM 9BCP
CARDIA Cohort	phv00120023	DATE OF EXAM-FORM 9
CARDIA Cohort	phv00120035	DATE OF EXAM-FORM 9TB
CARDIA Cohort	phv00120737	DATE OF EXAM 5
CARDIA Cohort	phv00120742	DATE OF EXAM 2
CARDIA Cohort	phv00120743	DATE OF EXAM 3
CARDIA Cohort	phv00120744	DATE OF EXAM 4
CARDIA Cohort	phv00120745	DATE OF EXAM 6
DCCT-EDIC Clinical Trial and Follow-up of Persons with Type 1 Diabetes	phv00032148	Date of examination
Framingham Cohort	phv00010826	What is the date today? (month, day, year)
Framingham Cohort	phv00072583	What is the date today? (month, day, year)
Framingham Cohort	phv00010807	What is the date today? (month, day, year)
Framingham Cohort	phv00010845	What is the date today? (month, day, year)
Framingham Cohort	phv00010864	What is the date today? (month, day, year)
Framingham Cohort	phv00010883	What is the date today? (month, day, year)
Framingham Cohort	phv00010902	What is the date today? (month, day, year)
Framingham Cohort	phv00010921	What is the date today? (month, day, year)
Framingham Cohort	phv00010940	What is the date today? (month, day, year)
Framingham Cohort	phv00010959	What is the date today? (month, day, year)
Framingham Cohort	phv00010978	What is the date today? (month, day, year)
Framingham Cohort	phv00010997	What is the date today? (month, day, year)
Framingham Cohort	phv00011018	What is the date today? (month, day, year)
Framingham Cohort	phv00011037	What is the date today? (month, day, year)
Framingham Cohort	phv00011056	What is the date today? (month, day, year)
Framingham Cohort	phv00072602	What is the date today? (month, day, year)
IMSGC Genome Wide Association Study of Multiple Sclerosis	phv00065554	Date of exam
The Genomics and Randomized Trials Network (GARNET) Vitamin Intervention Stroke Prevention (VISP) trial	phv00180273	What is today's date?
The Genomics and Randomized Trials Network (GARNET) Vitamin Intervention Stroke Prevention (VISP) trial	phv00180314	Date of exam
The Genomics and Randomized Trials Network (GARNET) Vitamin Intervention Stroke Prevention (VISP) trial	phv00180446	Today's date

Protocol - Scoliosis - Quality of Life

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