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Protocol - Scoliosis - Quality of Life

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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

ICD-9

ICD-9

□ Both

□ N/A

Secondary DX

DX

Tx

□ Right

□ Left

ICD-9

ICD-9

□ Both

□ N/A

Secondary DX

DX

Tx

□ Right

□ Left

ICD-9

ICD-9

□ Both

□ N/A

Secondary DX

DX

Tx

□ Right

□ Left

ICD-9

ICD-9

□ Both

□ N/A

Secondary DX

DX

Tx

□ Right

□ Left

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

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 CategoryRequired
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
StandardNameIDSource
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 IDVariable DescriptiondbGaP 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.