Background
Methods
Proxy item bank development
Proxy cognitive interviews
Recruitment and participants
Proxy cognitive interview process
Proxy cognitive interview questions
Items
Directions
Overall Assessment
N = 25 (%) | |
---|---|
Child's Gender- Female | 13 (52) |
Child's Age
| |
5-7 years | 17 (68) |
8-9 years | 3 (12) |
10-12 years | 0 (0)5 |
13-17 years | (20) |
Child's Grade Completed in School
| |
1st or less | 17 (68) |
2nd-5th | 3 (12) |
6th-11ths | 5 (29) |
Child's Race
| |
Caucasian | 14 (56) |
African American | 10 (40) |
Other-Mixed | 1 (4) |
Child's Ethnicity- Hispanic | 2 (8) |
Caregiver's Marital Status
| |
Divorced/Separated | 6 (24) |
Married | 13 (52) |
Never married | 6 (24) |
Caregiver's Education Status
| |
Advanced degree | 10 (40) |
College | 5 (20) |
Some college/AA | 5 (20) |
High School | 3 (12) |
Some high school | 2 (8) |
Caregiver's Occupation
| |
Full-Time Employed | 12 (48) |
Part Time Employed | 7 (28) |
Not employed | 6 (24) |
Chronic Health Condition in Past 6 Months*
| 17 (68) |
Asthma
| |
Child ever diagnosed with asthma and currently treated | 14 (56) |
Proxy cognitive interview data analyses
Proxy field-test survey instrument
Item Banks (number of total items) | Form 1* | Form 2* | Form 3* | Form 4* | Form 5 | Form 6 | Form 7 | Form 8 | Form Asthma |
---|---|---|---|---|---|---|---|---|---|
PROMIS Emotional Distress-Anger(n = 10) | 10 items | 10 items | 10 items | 4 items* | |||||
PROMIS Emotional Distress- Anxiety(n = 18) | 18 items | 9 items | 9 items | 9 items | 9 items | 4 items* | |||
PROMIS Emotional Distress-Depressive Symptoms (n = 21) | 21 items | 11 items | 10 items | 10 items | 11 items | 4 items* | |||
PROMIS Fatigue (n = 39) | 14 items | 20 items | 15 items | 19 items | 6 items | 8 items | 12 items | 13 items | 4 items* |
PROMIS Pain (n = 27) | 13 items | 14 items | 14 items | 13 items | 6 items | 7 items | 7 items | 7 items | 3 items* |
PROMIS Physical Function-Mobility (n = 32) | 13 items | 17 items | 19 items | 15 items | 6 items | 7 items | 10 items | 9 items | 4 items* |
PROMIS Physical Function-Upper Extremity (n = 38) | 14 items | 20 items | 24 items | 18 items | 6 items | 8 items | 12 items | 12 items | 4 items* |
PROMIS Social Peer Relationships (n = 74) | 26 items | 38 items | 48 items | 36 items | 12 items | 14 items | 24 items | 24 items | 8 items* |
PROMIS Asthma Impact (n = 34) | 34 items | ||||||||
Legacy Items | PedsQL Generic | PedsQL Generic Core | PedsQL Generic Core | PedsQL Generic Core | PedsQL Asthma Module 28 items; | ||||
Core Scales 23 items; KIDSCREEN 52 items | Scales 23 items; KIDSCREEN 52 items | Scales 23 items; KIDSCREEN 52 items | Scales 23 items; KIDSCREEN 52 items | DISABKIDS Asthma Module 14 items |
Field-test recruitment and participants
Field-test data analysis
Results
Proxy cognitive interviews
Item | Number of Caregivers Expressing Difficulty Answering Item/Number of Caregivers Answering Item | Selected Caregiver Quotes |
---|---|---|
Asthma Impact Items
| ||
My child's chest felt tight because of asthma. | 2/5 | "...she has never said anything directly to me so I had to guess" |
My child got tired easily because of his/her asthma. | 1/5 | " I don't see her at school when she would be running around" |
My child's body felt bad when he/she was out of breath. | 1/5 | " I don't know how his body felt, son didn't tell me how his body felt." |
Emotional Distress Items
| ||
My child worried about what could happen to him/her. | 2/5 | "My child doesn't always share his emotions with me." |
My child got scared really easily. | 1/5 | "It is harder to ascertain my child's feelings" |
My child felt alone. | 1/5 | "This was hard to answer because if she didn't tell me I wouldn't know." |
My child was worried when he/she was away from home. | 2/5 | "It's not so much the wording it's that you're asking me to report something that I don't know" |
Being sad made it hard for my child to do things with friends. | 1/5 | "I couldn't relate to questions about my child's feelings because I have no idea." |
Fatigue Items
| ||
My child was so tired it was hard for him/her to pay attention. | 1/5 | " I just answered to the best I could. I'm not always there when she would need to pay attention like at school" |
Pain Items
| ||
It was hard for my child to think when he/she had pain. | 2/5 | "I cannot measure/gage if he can think when he has pain as he may not tell me" |
It was hard for my child to remember things when he/she had pain. | 1/5 | "I don't know what he's thinking when he has pain." |
Social Role Relationship
Items
| ||
My child was good at making friends. | 2/5 | "The friends piece comes at school and I'm not there" |
It was hard for my child to make friends. | 2/5 | "I have no idea about things that occur at school or after- school that I can't see. These are questions about things that I haven't seen with my own eyes." |
Other kids teased my child. | 1/5 | "I'm not at school to see this" |
Other kids did not want to be my child's friend. | 2/5 | "These are things that are internal that I can't see as a parent" |
Other kids bullied my child. | 1/5 | "... if he doesn't talk about it or I don't see it happen... then I don't know"" |
My child was good at making friends. | 2/5 | "Anything that I'm able to observe is a lot easier to answer (vs. questions about how my child feels)." |
My child felt accepted by other kids his/her age. | 1/5 | "I don't have a gauge to know how he felt. I have to guess" |
Other kids did not want to be my child's friends. | 2/5 | "Some questions were harder due to difficulty knowing how to answer on behalf of child's experience " |
My child was able to have fun with his/her friends. | 1/5 | "this question was a little harder-I had to think about whether she had fun since I'm not always with her" |
My child was able to count on his/her friends. | 1/5 | "I had to think again about what she has told me." |
My child treated other kids his/her age with respect. | 1/5 | "This was a little harder to answer- because I'm not around her when she's around other kids." |
Other kids did not like my child. | 1/5 | "This was harder to answer because I am not around my child at school." |
My child felt nervous when he/she was with other kids the same age. | 2/5 | "I'm not sure what she is like when she is around other kids." |
Other kids wanted to be with my child. | 2/5 | "This is hard to answer because I'm not around her during the school day." |
Other kids wanted to be my child's friend | 1/5 | "With an older teenager it's a little more difficult to know." |
Other kids were mean to my child. | 1/5 | "It depends on whether the child tells the parents or if I observed it directly." |
My child teased other kids. | 1/5 | "It was impossible to know about other kids since I wasn't there." |
My child played alone and kept to himself/herself. | 1/5 | "I thought of it as "at our house". Because in school, Sunday school, etc. I do not have the foggiest idea." |
Large-scale proxy testing
N = 1548 dyad for children ages 8-17 years (% of complete data) | N = 432 for caregivers of children 5 7 years old (% of complete data) | |
---|---|---|
Caregiver's Gender | ||
Male | 228 (15) | 66 (15) |
Female | 1313 (85) | 365 (85) |
Missing | 7 | 1 |
Caregiver's Age | Mean = 41.1, SD = 7.8 | Mean = 35.7, SD = 7.9 |
Caregiver's Marital Status | ||
Never Married | 122 (8) | 49 (11) |
Married | 1060 (69) | 306 (71) |
Living with partner | 67 (4) | 23 (5) |
Separated or Divorced | 256 (17) | 46 (11) |
Widowed | 23 (2) | 5 (1) |
Missing | 20 | 3 |
Caregiver's Race | ||
White | 980 (64) | 271 (64) |
Black or African-American | 337 (22) | 94 (22) |
American Indian/Alaska Native | 22 (1) | 3 (1) |
Asian | 30 (2) | 10 (2) |
Native Hawaiian/Pacific Is. | 5 (.3) | 1 (.2) |
Other | 107 (7) | 34 (8) |
Multiple Races | 50 (3) | 12 (3) |
Missing | 17 | 7 |
Caregiver's Ethnicity | ||
Non Hispanic | 1370 (89) | 381 (89) |
Hispanic | 167 (11) | 47 (11) |
Missing | 11 | 4 |
Caregiver's Relationship to Child | ||
Mother, Stepmother, Foster Mother | 1248 (81) | 352 (82) |
Father, Stepfather, Foster Father | 211 (14) | 61 (14) |
Grandparent | 42 (3) | 11 (3) |
Guardian or Other | 35 (2) | 2 (.5) |
Missing | 12 | 4 |
Caregiver's Education Level | ||
< = 8th grade | 27 (2) | 3 (1) |
Some high school | 75 (5) | 23 (5) |
High school degree/GED | 277 (18) | 71 (17) |
Some college/technical degree | 529 (35) | 126 (29) |
College degree | 433 (28) | 123 (29) |
Advanced degree | 193 (13) | 82 (19) |
Missing | 14 | 4 |
Child's Age (yrs) | Mean = 12.1, SD = 2.6 | Mean = 6.0, SD = .83 |
Child's Gender | ||
Male | 736 (48) | 189 (44) |
Female | 809 (52) | 243 (56) |
Missing | 3 | 0 |
Chronic Health Condition in Past 6 Months | ||
> = 2 Chronic Health Conditions | 791 (51) | 215 (50) |
Most Common Chronic Health Conditions* | 174 (11) | 33 (8) |
ADHD/ADD | 91 (6) | 23 (11) |
Arthritis | 84 (5) | 18 (5) |
Mental Health Conditions | 54 (4) | 7 (2) |
GI Conditions | 39 (3) | 7 (2) |
Diabetes | 24 (2) | 3 (1) |
Allergies | 13 (1) | 9 (2) |
Kidscreen - 52 Parent Proxy Dimension Scores* Normative Data Sample | Males | Females | ||
---|---|---|---|---|
N
|
Mean (SD)
|
N
|
Mean (SD)
| |
Physical Well-Being | 7351 | 51.4 (9.9) | 8322 | 48.8 (10.0) |
Psychological Well-Being | 7375 | 50.1 (9.8) | 8380 | 49.9 (10.2) |
Moods & Emotions | 7347 | 50.4 (10.0) | 8353 | 49.7 (10.0) |
Self Perception | 7387 | 52.1 (9.8) | 8406 | 48.2 (9.8) |
Autonomy | 7426 | 50.7 (9.8) | 8448 | 49.4 (10.2) |
Parent Relations & Home Life | 7332 | 50.1 (9.8) | 8354 | 49.9 (10.2) |
Financial Resources | 7282 | 49.8 (9.9) | 8291 | 50.2 (10.1) |
Social Support & Peers | 7204 | 49.7 (10.2) | 8261 | 50.2 (10.0) |
School Environment | 7342 | 49.1 (10.0) | 8333 | 50.8 (9.9) |
Social Acceptance & Bullying | 7421 | 49.5 (10.2) | 8427 | 50.4 (9.8) |
Kidscreen-52 Parent Proxy Dimension Scores PROMIS Sample
| ||||
Physical Well-Being | 207 | 51.5 (13.0) | 252 | 49.6 (14.3) |
Psychological Well-Being | 207 | 50.9 (10.9) | 248 | 52.1 (11.5)a |
Moods & Emotions | 208 | 48.1 (13.3)b | 249 | 49.5 (11.7) |
Self Perception | 205 | 52.1 (11.7) | 248 | 48.7 (11.1) |
Autonomy | 208 | 50.8 (10.0) | 248 | 50.3 (10.7) |
Parent Relations & Home Life | 206 | 51.1 (9.8) | 251 | 51.7 (11.0)a |
Financial Resources | 205 | 50.2 (10.2) | 245 | 51.0 (10.9) |
Social Support & Peers | 202 | 50.1 (11.2) | 242 | 52.4 (11.7)a |
School Environment | 202 | 51.0 (11.7)a | 232 | 55.0 (11.4)a |
Social Acceptance & Bullying | 209 | 45.1 (13.3)b | 246 | 46.8 (11.7)b |
PedsQL™Generic Core Scales
| Total Scale Score Mean (SD) |
---|---|
Normative Data Sample*-Proxy with Female Child (n = 4834)
| 81.5 (15.9) |
Normative Data Sample *-Proxy with Male Child (n = 5236)
| 81.3 (15.9) |
PROMIS Sample-Proxy with Female Child (n = 256)
| 82.6 (11.8) |
PROMIS Sample-Proxy with Male Child (n = 208)
| 81.0 (12.1) |
Normative Data Sample *-Proxy with Child Ages 5-7 years old (n = 2464)
| 78.0 (16.4) |
Normative Data Sample *-Proxy with Child Ages 8-12 years old (n = 3152)
| 78.9 (16.6) |
Normative Data Sample *-Proxy with Child Ages 13-1 years old (n = 1384)
| 79.5 (16.4) |
PROMIS Sample-Proxy with Child Ages 5-7 years old (n = 106)
| 83.3 (10.8)a |
PROMIS Sample-Proxy with Child Ages 8-12 years old (n = 174)
| 81.1 (12.1) |
PROMIS Sample-Proxy with Child Ages 8-18 years old (n = 187)
| 81.9 (12.4) |
PedsQL™ Generic Scales | Normative Data Sample*-Proxy with Healthy Child | Normative Data Sample*-Proxy with Chronic Disease Child | Normative Data Sample-Proxy with Asthma Child** | PROMIS Sample-Proxy with Healthy Child |
PROMIS Sample-Proxy with Chronic Disease Child
|
PROMIS Sample-Proxy with Asthma Child
|
---|---|---|---|---|---|---|
Mean (SD) (n = 8713)
|
Mean (SD) (n = 831)
|
Mean (SD) (n = 145)
|
Mean (SD) (n = 289)
|
Mean (SD) (n = 177)
|
Mean (SD) (n = 379)
| |
Physical Functioning | 84.1 (19.7) | 77.0 (20.2) | 89.4 (9.8)a | 80.1 (14.3) | ||
Emotional Functioning | 81.2 (16.4) | 71.1 (19.8) | 79.2 (14.7)b | 71.3 (16.8) | ||
Social Functioning | 83.1 (19.7) | 75.1 (20.8) | 89.7 (12.9)a | 79.5 (16.6)a | ||
School Functioning | 78.3 (19.6) | 65.6 (21.8) | 81.3 (15.2)a | 71.2 (16.9)a | ||
Psychosocial Health | 81.2 (15.3) | 71.0 (17.3) | 83.7 (11.7)a | 73.2 (13.5) | ||
Summary | ||||||
Total Score | 82.3 (15.6) | 73.1 (16.5) | 85.8 (10.0) | 75.7 (12.1)a | ||
PedsQL
™
Asthma Module Scales
| ||||||
Asthma Symptoms | 63.3 (21.4) | 73.3 (20.4)a | ||||
Treatment Problems | 77.3 (17.2) | 81.0 (16.2)a | ||||
Worry | 77.4 (22.4) | 84.3 (19.8) | ||||
Communication | 71.4 (26.9) | 77.1 (26.1) |