Youth Quality Of Life Manual Yqol

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Youth Quality of Life Instruments
U.S. Version

User’s Manual and Interpretation Guide
First Edition
Seattle Quality of Life Group
University of Washington
Department of Health Services
Box 358852
Seattle, WA 98103-8652

Tari D. Topolski, Todd C. Edwards, and Donald L. Patrick

ACKNOWLEDGEMENTS:
The authors would like to acknowledge support to the University of Washington from the
Centers for Disease Control and Prevention Cooperative Agreement No. U48/CCU009654
and from a contract awarded by Eli Lilly and Company for development of the Youth
Quality of Life Instruments. Field testing of the YQOL surveillance instrument was made
possible with the generous cooperation of Frank Mondeaux and RMC Research
Corporation of Portland Oregon.

This manual was prepared by:
Tari D. Topolski, Ph.D., Project Manager and Research Analyst
Todd C. Edwards, Ph.D., Project Manager and Research Scientist
Donald L. Patrick, Ph.D., M.S.P.H., Principal Investigator

ii

PURPOSE OF THIS MANUAL
The purpose of this manual is to facilitate instrument administration, scoring, and
interpretation of the YQOL-R, YQOL-S and YDS instruments.
For information on the SeaQoL Research Group, please visit our web site:
http://www.seaqolgroup.org

or send queries to:

Seattle Quality of Life Group
Attn: Dr. Donald L. Patrick
University of Washington
Department of Health Services
146 N. Canal Street, Suite 313
Box 358552
Seattle, WA 98103-8652
Telephone: (800) 291-2193
Fax: (206) 616-3135
Email: seaqol@u.washington.edu

Suggested citation:
Topolski, T. D., Edwards, T. C., and Patrick .D L. (2002). User's manual and interpretation
guide for the Youth Quality of Life (YQOL) Instruments. Seattle, WA: University of
Washington, Dept. of Health Services.

iii

USER AGREEMENT
Conditions for user of the Youth Quality of Life Instrument
Research Version (YQOL-R) and Surveillance Version (YQOL-S)

Date: _______ _________, _______
Day
Month
Year
______________________
CONTACT INFORMATION
Name: ________________________________________________________________
Agency/University/Company: ______________________________________________
Title: _________________________________________________________________
Full Address: ___________________________________________________________
______________________________________________________________________
Country: _______________________________________________________________
Phone: ___________________________ Fax: ________________________________
E-mail: ________________________________________________________________
___________________
SUMMARY OF STUDY
 Title:
 Disease or disorder:
 Type of research
 Primary outcome measure or end point:
 Design:
 Number of expected respondents (total):
 Number of expected administrations of the questionnaires per respondent:
 Length of the follow-up (if any):
 Planned study date:
 Name of the funder:
 Other questionnaires used in the study:
 Number of countries/language versions involved:
SPECIFY:
USA (Spanish) 

USA (English) 

UK (English) 

iv

IMPORTANT REMARK : THE YQOL-R MAY BE USED IN THE ABOVE MENTIONED INVESTIGATIONS
WHEN THE FOLLOWING

AGREEMENT IS COMPLETED AND SIGNED BY “USER”.

« Person, University, Company» referred hereinafter as « User » wishes to use the YQOLR in the above mentioned versions.

The UNIVERSITY OF WASHINGTON distributes the YQOL-R and its translations available
in the following languages: U.S. English, U.S. Spanish, U.K. English.

Therefore, User and UNIVERSITY OF WASHINGTON agree as follows :

1.

UNIVERSITY OF WASHINGTON’s obligations

UNIVERSITY OF WASHINGTON shall deliver the original YQOL-R and/or the
translations requested by “User” subject to the following conditions:

2.



The translations requested are available, and



The present agreement is duly completed and signed by “User”

“User”’s obligations

2.1 No modification
“User” shall not modify, abridge, condense, adapt, recast or transform the YQOL-R in
any manner or form, including but not limited to any minor or significant change in
wordings or organisation in YQOL-R, without the prior written agreement of
UNIVERSITY OF WASHINGTON.
2.2 No translation
“User” shall not translate YQOL-R, without the prior written agreement of the
Authors.
2.3 No reproduction

v

“User” shall not reproduce the YQOL-R except for the limited purpose of generating
sufficient copies for use in investigations stated hereunder and shall in no event
distribute copies of the YQOL-R to third parties by sale, rental, lease, lending, or any
others means.
2.4. Publication
In case of publication of study results, “User” shall cite (1) “Edwards TC, Huebner CE,
Connell FA, Patrick DL (2002). Adolescent quality of life, part I: conceptual and
measurement model. Journal of Adolescence 25(3), 275-86.” And (2) “Patrick DL,
Edwards TC, Topolski TD (2002). Adolescent quality of life, part II: initial validation of a
new instrument. Journal of Adolescence 25(3), 287-300.” in reference section of the
publication. (New publications may be added and older ones deleted).

2.5 Provision of data
All data, results and reports obtained by, or prepared in connection with the YQOL-R
shall remain the User’s property. However, UNIVERSITY OF WASHINGTON may
request the User to share data, results and reports obtained through the use of the
YQOL-R. UNIVERSITY OF WASHINGTON shall ensure the anonymisation of such
data at three levels, by the removal of: any patient identification, any university or
company identification and any therapy name. UNIVERSITY OF WASHINGTON will
classify and reorganize such anonymous data and therefore, shall hold all intellectual
property rights regarding these data when and if submitted to the data pool.

UNIVERSITY OF WASHINGTON may provide such reorganized data to third parties,
for analysis in education, research, consulting, and specifically for the evaluation of
cross-cultural equivalence and development of reference values for this YQOL-R or for
any other similar project.
2.6 Payment
2.6.1 Royalty fees (Authors)
The use of the YQOL-R is free of author’s royalty fees.

vi

2.6.2 Distribution fees (UNIVERSITY OF WASHINGTON)
The use of the YQOL-R in studies is subject to a distribution fee payable to
UNIVERSITY OF WASHINGTON, of an amount of 75 dollars for general and
administrative expenditures plus 25 dollars per language version requested. This fee
includes provision of a user manual and scoring program.
The use of the YQOL-R in non-funded academic research in developing countries or
by students is subject to a $25 fee for the instruments and user manual.

2.6.3 Invoicement
For the use of the YQOL-R, as soon as execution of this agreement, UNIVERSITY OF
WASHINGTON shall promptly provide “User” with a definitive invoice, and “User” shall
pay such invoice within thirty (30) days of the date of the invoice.

3. Copyright Infringement
The YQOL-R was developed by the Seattle Quality of Life Group at The University of
Washington. The UNIVERSITY OF WASHINGTON holds copyright over the YQOL-R
and all its present and future translations. Each new translation will be made available
to third parties once it is available, through UNIVERSITY OF WASHINGTON, under
the conditions described in the present document.
If, at any time during the term of this agreement, « User » learns of any infringement
by a third party of any Intellectual Property Rights in connection with the YQOL-R,
« User » shall promptly notify UNIVERSITY OF WASHINGTON. UNIVERSITY OF
WASHINGTON shall notify such infringement to Authors. Authors will decide to
institute or not proceedings against the infringing party.

4. Confidentiality

All and any information related to the YQOL-R including but not limited to the following:
information concerning clinical investigations, creations, systems, materials, software,
data and know-how, translations, improvements ideas, specifications, documents,

vii

records, notebooks, drawings, and any repositories or representation of such
information, whether oral or in writing or software stored, are herein referred to as
confidential information.
In consideration of the disclosure of any such confidential information to the other,
each party agrees to hold such confidential information in confidence and not divulge
it, in whole or in part, to any third party except for the purpose specified in this
agreement.

5. Use of name
It is agreed that UNIVERSITY OF WASHINGTON shall not disclose, whether by the
public press or otherwise, the name of “User’ or institution”, to any third party to this
agreement except to the copyright holder(s) of the YQOL-R.

6. Liability
6.1 In case of breach of contract

In the event of total or partial breach by UNIVERSITY OF WASHINGTON of any of its
obligations hereunder, UNIVERSITY OF WASHINGTON’s liability shall be limited to the
direct loss or damage (excluding loss of profit and operating losses) suffered by “User”
as a result of such breach and shall not include any other damages and particular
consequential damages.
6.2 In the scope of the use of the “Questionnaire”

Under no circumstances may Authors or UNIVERSITY OF WASHINGTON be held
liable for direct or consequential damage resulting from the use of the YQOL-R.

6.3 In the event of non-renewal of this Agreement
In the event of non-renewal of this Agreement by UNIVERSITY OF WASHINGTON for
any cause or failure by UNIVERSITY OF WASHINGTON to conclude a new

viii

agreement with “User” upon the expiry of this Agreement, UNIVERSITY OF
WASHINGTON will have no liability for payment of any damages and/or indemnity to
“User”.

7. Term and termination
This agreement shall be effective as the date of its signature by “User” and shall
continue for a term of 10 (ten) years at least or until the term of the study above
mentioned in SUMMARY OF THE STUDY.
Either party may terminate this Agreement immediately upon providing written notice
to the other party in the event of: (a) the other party’s unexcused failure to fulfill any of
its material obligations under this Agreement or (b) upon the insolvency or bankruptcy
of, or the filing of a petition in bankruptcy or similar arrangement by the other party.
Upon expiration or termination of this Agreement UNIVERSITY OF WASHINGTON
may retain in its possession confidential information it acquired from YQOL-R while
under contract. The obligations which by their terms survive termination, include,
without limitation, the applicable ownership, confidentiality and indemnification
provisions of this Agreement, shall survive termination.

8. Assignment
This Agreement and any of the rights and obligations of “User” are personal to the
“User” and cannot be assigned or transferred by “User” to any third party or by
operation of law, except with the written consent of UNIVERSITY OF WASHINGTON
notified to “User”.
9.

Separate Agreement
This Agreement holds for the above mentioned study only. The use of the YQOL-R in
any additional study of the “User” will require a separate agreement without
additional fees, unless significant updates have been added to the user manual
(new edition, etc.).

11. Entire Agreement, Modification, Enforceability

ix

The entire agreement hereto is contained herein and this Agreement cancels and
supersedes all prior agreements, oral or written, between the parties hereto with the
respect to the subject matter hereto.
This Agreement or any of its terms may not be changed or amended except by written
document and the failure by either party hereto to enforce any or all of the provision(s)
of this Agreement shall not be deemed a waiver or an amendment of the same and
shall not prevent future enforcement thereof.
If any one or more of the provisions or clauses of this Agreement are adjudged by a
court to be invalid or unenforceable, this shall in no way prejudice or affect the binding
nature of this Agreement as a whole, or the validity or enforceability of each/and every
other provision of this Agreement.

12. Governing law
This Agreement shall be governed by and construed in accordance with the laws of
the State of Washington. Any disputes will be adjudicated first through the
UNIVERSITY OF WASHINGTON and subsequently through courts in the State of
Washington.

IN WITNESS WHEREOF, the parties hereto have caused this agreement to be
executed by their duly authorised representatives as of the date first above written.

User/University/Company

UNIVERSITY OF WASHINGTON

Name:

Name:

Title:

Title:

Signature:

Signature:

Date:

Date:

x

Table of Contents
Acknowledgements: .............................................................................................................................................ii

Purpose of this Manual .............................................................................................................. iii
User Agreement ......................................................................................................................... iii
Project Contact and Summary Information Form .......................................................................v
Why Quality of Life? ................................................................................................................... 1
Development of the instruments ................................................................................................ 1
YQOL-R ...................................................................................................................................... 2
Youth Quality of Life Instrument - Research Version ............................................................................................ 5
Participation and Sample Characteristics ............................................................................................................. 6
Instrumentation 6
Psychometric Evaluation ..................................................................................................................................... 7

Domain Structure of the YQOL-R................................................................................................ 8
Internal consistency .................................................................................................................... 8
Reproducibility............................................................................................................................. 8
Content Validity ........................................................................................................................... 8
Construct Validity ........................................................................................................................ 8
Known Groups Validity ................................................................................................................ 9
Item Reduction and Measurement Model ............................................................................................................. 9
Severity Ratings and Treatment Status of Participants ......................................................................................... 9
Scores on the YQOL-R Perceptual Domains...................................................................................................... 10
Internal Consistency and Reproducibility............................................................................................................ 11
Validation of the Construct ................................................................................................................................. 13

YQOL-S .................................................................................................................................... 10
The Youth Quality of Life Instrument - Surveillance version (YQOL-S) ..................................... 14
Construct Validity ...................................................................................................................... 14
Using the YQOL-S .................................................................................................................... 14

YDS .......................................................................................................................................... 14
The Youth Disability Screener (YDS) ........................................................................................ 17
Validation of the YDS ................................................................................................................ 17
Using the YDS........................................................................................................................... 17

Scoring the Instruments ........................................................................................................... 18
Scoring the YQOL-R.......................................................................................................................................... 18
Scoring the YQOL-S .......................................................................................................................................... 19
Scoring the Contextual Items ............................................................................................................................. 19
Scoring the YDS ................................................................................................................................................ 20
REFERENCES

21

APPENDIX A
APPENDIX B
APPENDIX C
APPENDIX D
APPENDIX E
APPENDIX F
APPENDIX G
APPENDIX H

Youth Quality of Life Instrument - Research Version Perceptual Items by Domain ....... 25
YQOL-R Perceptual Items ............................................................................................. 27
YQOL Contextual Items ................................................................................................ 31
YQOL-S Perceptual Items ............................................................................................. 33
Youth Disability Screener .............................................................................................. 34
SPSS Syntax for Scoring the YQOL-R .......................................................................... 35
SPSS Syntax for Scoring the YQOL-S .......................................................................... 38
Format for Sending Data Files to SeaQoL Group.. ....................................................... 39

xi

WHY QUALITY OF LIFE?
Measures of mortality, morbidity, and
behavioral risks are important in tracking
health trends and in identifying social,
cultural, and economic differ-ences
(Centers for Disease Control and
Prevention, 1995). Such measures,
however, do not provide the means for
comparing the perceived well-being of
different populations. Outcome measures that provide universal, comprehensive assessments of well-being
are needed to complement diagnostic
and clinical measures. A concept that
meets these requirements is "quality of
life" (QoL).
Quality of life (QoL) is an important
concept that is “affected in complex
ways by the person's physical health,
psychological state, level of independence, social relationships, and the
person’s relationships to salient features
of the environment” (WHOQOL Group,
1994). It has been defined as “an
individual's perception of their position in
life in the context of the culture and
value systems in which they live and in
relation to their goals, expectations,
standards, and concerns" (Bonomi,
Patrick, Bushnell, & Martin, 2000;
WHOQoL Group, 1994). QoL defined
this way is broader and more global
than the concept of “subjective wellbeing” in reflecting the cultural and
social context that defines the good life
(Kahneman, Diener, & Schwartz, 1999,
p. x).
The growing trend toward defining
health more broadly than the absence of
illness or disease has brought increased
attention to QoL in pediatrics and
adolescent medicine in recent years
(Bullinger & Ravens-Sieberer, 1995;
Drotar, 1998). This trend has been
influenced by: advances in evidencebased medicine (Christakis, Davis, &
Rivara, 2000) and an increasing cultural
emphasis on the autonomy of youth that

promotes self evaluation (Levine, 1995).
Most studies assessing QoL among
adolescents with chronic condi-tions use
a narrow definition focused on aspects
attributable to a particular condition
(Wallander & Varni, 1998), or the slightly
broader definition of functional status
(Harding, 2001). These more narrowly
focused measures are important in
detecting small or disease-specific
changes in a child’s functioning (Levi &
Drotar, 1998), but they are not adequate
for the assess-mint of perceived QoL
across different conditions or among the
general population. The desire to
compare QoL and its determinants
among different population subgroups,
particularly vulnerable populations such
as children and youth with chronic
conditions and disabilities (National
Institute on Disability and Rehabilitation
Research, 1998) has served to promote
QoL research.
A few measures of adolescent
perceived QoL have been developed
elsewhere, including Sweden (Lindstrom
& Eriksson, 1993), Germany (RavensSieberer & Bullinger, 1998), and
Canada (Raphael, Rukholm, Brown,
Hill-Bailey, & Donato, 1996), but a
comprehensive measure for use in the
USA has not been available previously.

DEVELOPMENT OF THE
INSTRUMENTS
Theoretical Development
A grounded theory approach derived
from the sociological theory of symbolic
interactionism (Blumer, 1969) was used
to guide the development of the YQOL
conceptual model (Glaser & Strauss,
1967; Strauss & Corbin, 1990). This
approach is used to model phenomena
about which little are known. It
emphasizes social dynamics, and is an
inductive process approach based on
the basic tenet that people construct

1

meanings about their lives based on
interactions they have with other people.
Based on this approach, in-depth interviews, with a purposive sample of
adolescents with and without disabilities
ages 11-18, were conducted to assist in
the development of the conceptual
model and instrument items. Focus
groups with adolescents, primary
caregivers, and child health and welfare
professionals were conducted. Existing
instruments, used to assess adolescent
health and well-being, were consulted
as well.
The items comprising the YQOL
instruments were written primarily based
upon
adolescent
interviews,
and
secondarily upon existing instruments.
The adolescents' own words were
preserved as much as possible in
creating the items. There are two types
of items in the instruments: 1)
perceptual, or known only to the
adolescent him or herself, and 2)
contextual, or potentially verifiable by an
outside observer. The perceptual items
are primary in assessing QoL, as
reflected in the WHOQOL Group
definition regarding "perception of
position in life". The contextual items
are of secondary importance, but are
especially useful for comparing the living
conditions of disparate population subgroups. It is our position that ideally
both types of items be used together to
comprehensively assess QoL.

specific modules. A congenital and
acquired facial anomalies module is
currently being validated. The modular
approach toward development is
outlined in Figure 1 below.
The QoL definition adopted by the
SeaQoL Group required that youth,
themselves, define the important
concepts and items. Additionally, it
necessitated that the measure employ
subjective
self-report
whenever
possible, and that the items be
developmentally
appropriate.
Additionally, the items were written
primarily from a positive "glass half full"
perspective, in order to counterbalance
the deficit approach of assessment
traditionally used.

The YQOL Instruments have been
developed via a modular approach.
There is a longer version designed for
research and evaluation (YQOL-R), and
a shorter version designed for
population surveillance (YQOL-S). The
YQOL-S is not intended, however, to be
a representative short form version of
the YQOL-R. It is, rather, a collection of
individual social indicators of potential
interest to policymakers. There are also
plans for developing health condition-

2

YQOL-S

YQOL-R

Scores

Group-Level
Contextual
Perceptual

5 items
8 items

15 items
41 items

individual items
domain & total

Individual-Specific
Perceptual

N/A

5 top areas

under development

Condition Specific
Facial Differences
Facial Surgery

dependent upon particular module
Under development

Figure 1. YQOL Modular Development
Conceptual Model
The conceptual model presented in
Figure 2 was derived via the grounded
theory method. Interview data from 33
adolescents in the greater Seattle area,
from various walks of life including
mainstream, homeless, gay/lesbian, and
those living with disabilities was
analyzed.
The
interviews
were
audiotaped and transcribed verbatim for
use in analysis. To help ensure that all
relevant data were included in the
analysis, at least two members of the
research team (consisting of a
sociologist,
a
pediatrician,
a
developmental psychologist, and a
social psychologist) reviewed each
interview and highlighted text that
was relevant to the interviewees'
concept of QoL.
The highlighted text, as well as
information regarding the interview from
which it was taken, was entered into a
spreadsheet and distributed to pairs of
team members for coding. Team
members used three coding strategies:
1) open coding which is the assignment
of codes to the text based on words or
phrases that captured meaning in the
data 2) axial coding, which compares
open codes to each other to create
relevant categories; and 3) selective

coding, which uses frequently occurring
axial codes to create core categories, or
model domains (Strauss and Corbin,
1990).
The team members began open coding
with a preliminary set of codes generated
by one of the investigators’ initial review of
several interviews. Each team member
added codes as necessary. All codes
generated by this process were retained
for analysis. Thus, a particular unit of text
could have more than one code assigned
to it by one or more coders. In this way,
the unique perspective of each team
member was preserved, and particular
units of text were allowed to represent
more than one concept. Such flexibility at
this stage of coding was designed to allow
for the emergence and assignment of as
many relevant codes as possible, and
was balanced by a consensus process
whereby each analysis decision in axial
and selective coding was reviewed and
approved by each of the team members.
New codes were compared to existing
codes
and
consolidated
when
appropriate. The team worked by
consensus to sort the open codes into a
comprehensive list of categories via axial
coding, and then to sort the axial codes
into a conceptual model of QoL via
selective coding.

3

"My Evaluation Of…"
Social Relationships
"…my relationships
with others"

• adult support
• caring for others
• family relations
• freedom
• friendships
• participation
• peer relations

Sense of Self

Environment

"…my feelings
about myself"

"…my opportunities
& obstacles"

• belief in self
• being oneself
• mental health
• physical health
• spirituality

• engagement, activities
• good education
• liking neighborhood
• monetary resources
• personal safety
• view of future

General Quality of Life
"…my life"

• enjoying life
• feeling life is worthwhile
• satisfied with one's life
Figure 2. YQOL Conceptual Model
Response Scales
The YQOL instruments use two different
types of response scales: 5 point Likert
Scales with verbal anchors on each of
the five responses and 11 point (0-10)
rating scales with anchors outside the
ends. Likert scales are used widely in
attitudinal research and in research with
adolescents. The response scale used
most frequently in constructing the
contextual items ("Describing Your Life"
section) is a frequency mode as follows:






Previous research indicates that this
response scale even if ordinal in
measurement can be used in summated
ratings and treated as an interval scale.
Investigators are cautioned, however,
that analyses should be conducted
using parametric and non-parametric
methods for verification of findings,
given that these five point scales are not
labeled
numerically
nor
have
respondents been instructed to treat
them as equal interval.

Never
Almost Never
Sometimes
Fairly Often
Very Often

The adjectives used in this scale are
intended to be equidistant from each
other; however, we have not conducted
research to date to verify the equalinterval property of the response scale.

4

The response scales used with the
perceptual items are:
Not at all| 0 1 2 3 4 5 6 7 8 9 10 |Completely

Or
Not at all | 0 1 2 3 4 5 6 7 8 9 10 | A great
deal

These response scales are based on
the familiarity of the decimal system and
of rating things as “…out of 10” in the
common parlance of adolescents.
Research indicates that discrimination
among categories can improve up to 1113 points, after which persons are
unable
to
discriminate
between
numerical options (Nunnally, 1994).
These response scales were tested with
6th to 12th grade students in the Seattle
area. Students were asked to state their
preference between 7-point Likert
scales and the 11-point rating scales.
Younger respondents preferred the 0-10
point scales, while older students were
indifferent between the two options.
For a complete description of the
process used in developing the YQOLR, see Edwards, et al., in press.

Instrument Validation
The studies to validate the YQOL-R and
YQOL-S were conducted with approval
from the institutional review boards at
the University of Washington and
Children’s Hospital and Regional
Medical Center in Seattle. Data from
the various studies used in the
validation of these instruments will be
presented separately below.

YOUTH QUALITY OF LIFE
INSTRUMENT - RESEARCH
VERSION (YQOL-R)

The initial validation of the perceptual
component of the YQOL-R followed
established guidelines for measurement
development (American Psychological
Association, 1985; Medical Outcomes
Trust, 1995; Nunnally, 1994), including
conceptual and measurement model,
reliability, validity, respondent and
administrative burden, and alternative
modes of administration.
Adolescents were recruited in the
Seattle,
Washington
area
from
Children’s Hospital and Regional
Medical Center, community clinics for
treating attention-deficit hyperactivity
disorder (ADHD), adolescent health
clinics at the University of Washington
and other health care organizations, and
through ads in local newspapers. Both
parents/guardians and adolescents
completed
consent/assent
forms.
Parents gave formal written consent for
the adolescents’ physicians to release
diagnostic and treatment information.
Study group assignment was based on
parental (or guardian) response to a
telephone interview.
The interview
elicited the following information:
 age and grade in school
 ability to read English at the 6th
grade level
 special classes at school
 history of physician diagnoses for
depression, ADHD, or other mental
health conditions
 past and current treatment for
mental and physical health problems
 history of a disability lasting more
than 6 months requiring the use of
an aid or device for moving about
the community
 history of any other long-term
physical health problems
 assessment of which condition, in
the case of more than one, presently
had the greatest impact on the
adolescent’s life.

5

Participant Characteristics

Adolescents meeting the age and
reading criteria were assigned to the
appropriate study cell based on the
information derived from the parent. In
cases where there were co-existing
chronic conditions, the parent had to
report that the target cell condition
(ADHD or mobility impairment) was
having the greatest current impact on
the adolescent's life.

The final sample for analysis included
236 adolescents (Table 1). Over a 12month
recruitm ent
period ,
parents/guardians of 370 youth were
screened. Of these, 236 met eligibility
criteria, and returned consent forms.
The predominately Anglo-American
sample was ethnically similar to the
population of the Seattle-King County
area.

Table 1
Age, Sex and Ethnicity of Participants by Study Group
Total
Sample
(n=236)

No Chronic Condition
(n=116)

ADHD
(n=68)

%

%

%

Mobility
Disability
(n=52)
%

Age
12-14

33

36

46

12

15-18

67

64

54

88

Female

30

41

0

44

Male

70

59

100

56

80

75

90

84

7

12

0

4

5

5

4

4

Hispanic

1

0

0

4

Other/Mixed

8

8

6

4

Sex

Ethnicity
White
Asian/Pacific
Islander
African-American

Instrumentation
In validating the YQOL-R, data were
collected with a variety of instruments to
assess convergent and discriminant
validity, including the assessment of
differences in known groups. A brief
description of the instruments and how
they were used follows.

Clinician Diagnosis Verification Form.
Clinicians were instructed to verify the
presence or absence of: (a) clinical
depression, (b) ADHD, (c) physical
disabilities or chronic conditions, and (d)
other physical or mental health
diagnoses.
For each condition, the
clinician rated the severity of the

6

condition on a 1 (normal, not ill) to 7
(very severely ill) scale, and indicated
the types of treatment received for the
condition.
Conners' Auxiliary ADHD/DSM IV
Instrument – Adolescent Self-Report
(CADS-A) (Conners, 1997) is a selfreport sym ptom and behav ior
questionnaire designed to discriminate
youth aged 12 to 17 with the psychiatric
diagnoses
of
attention
deficit,
hyperactivity, and combined attentiondeficit hyperactivity disorder as opposed
to those with other psychiatric conditions
or normals. The CADS-A was used for
known groups/discriminant validation of
the YQOL-R.
Children’s Depression Inventory (CDI)
(Kovacs, 1992), a self-report symptom
oriented
instrument
designed
to
discriminate children and adolescents
aged 7 to 17 with the psychiatric
diagnosis of major depressive or
dysthymic disorder as opposed to those
with other psychiatric conditions or
normals. The CDI was used in the
analysis of convergent/discriminate
validity. It was also used to control for
depressed affect, which has been
shown to have a significant negative
correlation with quality of life (Goldney,
Fisher, Wilson & Cheok, 2000).
Functional Disability Inventory (FDI)
(Walker and Greene, 1991), designed
for use with youth age 9 to 17, was used
to assess ability of participants to
perform daily activities, including sleep
and rest, eating, home management,
school, ambulation, mobility, and social
interaction. The FDI provided another
means
for
assessing
known
groups/discriminant validity.
Munich Quality of Life Questionnaire For
Children (KINDL) (Ravens-Sieberer &
Bullinger, 1998) assesses satisfaction
with physical, psychological, social, and

functional aspects of life. Developed in
Germany, the KINDL is designed for
youth ages 10-18 and a version in
American English was incorporated here
for testing of convergent validity.
The Youth Disability Screener (YDS)
was developed by the research team as
a short (4 item) self-administered
screening instrument (Patrick, Connell,
Edwards, Topolski, & Huebner, 1998) to
identify adolescents with and without
disabilities. We used this screener to
confirm our disability recruitment
category, and to test the ability of the
YQOL-R to discriminate between
participants with and without disabilities.
See the YDS section below for a fuller
explanation of the instrument.
Psychometric Evaluation
Development of the YQOL-R perceptual
module involved psychometric and
practical
testing
to
ev aluate
measurement
properties,
including
conceptual and measurement model,
reliability, validity, respondent and
administrative burden, and alternative
modes of administration. The adequacy
of the hypothesized conceptual model
was evaluated by examining evidence
that:
(1) the expected subdomains
measured a single construct; (2)
multiple scales measured distinct
domains; and (3) the scale adequately
represented variability in the domain.
Poorly performing items in an instrument
adversely affect the scale's ability to
discriminate between different groups of
respondents (e.g., "typical" adolescents
vs. adolescents with disabilities), as well
as diminish the chances of detecting
important changes that result from
treatment. A review of the frequencies
and ranges verified that all response
choices were used, and that they
followed a normal distribution. The cutpoint adopted for floor/ceiling effects
was greater than 66% of respondents

7

scoring in the top or bottom two
response
categories.
The
MultiTrait/Multi-Item Analysis program (MAP)
was used to investigate the scaling
assumptions of the YQOL-R, including
the total score and subscale scores that
were derived from the measure (Hays et
al., 1988; Ware, Harris, Gandek, Rogers
& Reese, 1997).
The
multitrait/multi-item
correlation
matrix was used to examine the
relationship of each item to its
hypothesized scale and the other
scales. A correlation of <0.4 was used
to eliminate items not measuring the
construct. Items correlating significantly
higher with one of the competing scales
than with its hypothesized scale were
moved to the competing scale. Items
with a within scale bivariate correlation
>0.7 were considered redundant and
subject to elimination, if the integrity of
the scale could be maintained.
Additionally, inter-scale correlations
were computed to assess whether the
scales uniquely contributed to the
reliable variance in the data. Finally,
items were assessed for >5% missing
data. In addition to these psychometric
properties of the items and scales,
cognitive debriefing reports (Fowler,
1993;
Jabine,
Stras,
Tanur,
&
Tourangeau, 1984) and investigator
judgment were used in making final
decisions on eliminating items.
Domain Structure of the YQOL-R

A principal components analysis with
orthogonal varimax rotation of a four
factor solution was used to test the a
priori hypotheses of inter-relationships
and the association of items to domains
or “traits” (Hambelton and Slater,
1997). Addit ionally, a pr inc ipal
components analysis with a single factor
was fit to the four domain scores to test
the hypothesis of a total score.

Internal consistency

Cronbach’s Alpha was used to test
internal scale consistency. A minimum
coefficient of 0.70 was considered
necessary for group comparisons.
Reproducibility

The reproducibility of the YQOL-R was
examined by reviewing the data from 46
participants without chronic conditions
who completed the YQOL-R instrument
at baseline and again one week later.
The intraclass correlation was used to
assess the degree of reliability. An ICC
> 0 .70 was considered necessary for
group comparisons.
Content Validity

As described in the instrum ent
development section, the content
validity of the YQOL-R was aided by
having adolescents themselves define
the content of items. Additional items
were
elicited
from
adolescent
health/welfare experts and reviews of
the
adolescent
biomedical
and
psychosocial
literature
(Edwards,
Huebner, Connell, & Patrick, in press).
Construct Validity

Convergent and discriminant construct
validity involve comparing logically
related measures to see if they are
correlated more strongly (convergent) or
more weakly (discriminant) according to
a priori expectations based on the
content and theoretical relationships
among constructs and their measures.
For convergent and discriminant validity,
we made the following a priori
hypotheses: that a significant and higher
correlation would be observed between
the KINDL and the YQOL-R (measures
of the same construct of perceived QoL)
than between the FDI (disability) or the
CDI (depressive symptoms) and the
YQOL. The correlation of the YQOL with
the KINDL compared to the correlation

8

between the YQOL and the FDI and CDI
was assessed using t-tests.
Known Groups Validity

Another form of discriminant validity,
known groups validity, was used to test
the ability of the YQOL-R to discriminate
between groups varying on known
characteristics independent of or distal
to the QOL measure. Depression and
QoL have been shown to be significantly
associated (Goldney et al., 2000). It has
also been shown that adolescents with
chronic conditions (such as epilepsy and
severe acne) report higher levels of
depression (Dunn, Austin, & Huster,
1999; Klassen, Newton & Mallon, 2000).
Therefore, in our analysis of QoL, this
association was taken into account.
Pairwise comparisons with Bonferroni
adjustments were used to determine
whether the YQOL-R could discriminate
among adolescents who: 1) were
recruited by study group with mobility
disability, ADHD, or no chronic
conditions, adjusted for the cov ariates
age and depressive symptomatology, 2)
reported depressive symptomatology
based on a cut point of greater than or
equal to 20 on the CDI, 3) reported
ADHD symptoms based on a cut point
of 16 or greater on the CADS-A, which
is suggested to designate adolescents
who are “at-risk” for ADHD, and 4) were
with and without disabilities based on
their self-report on the YDS which
required a positive endorsement of one
of four items regarding physical,
emotional, or learning disabilities.
Item Reduction and Measurement
Model
The original 49-item perceptual module
fielded in the validation study was
reduced to the 41 items shown in
Appendix A on the basis of the
multitrait/multi-item
analyses
and
investigator judgment.
Six
items

correlated <0.40 with their hypothesized
scale, or correlated higher with at least
two other scales, and tended to have
positively skewed distributions. Two
items were judged by the research team
to have been poorly worded, and were
eliminated. Based on the correlations
between the scales and the items, two
other items were moved to different
scales. No items were eliminated solely
because of floor or ceiling effects. One
item, on which participants compared
themselves with others their age, was
taken out of the measure for use as a
construct validation variable.
On the basis of the multitrait/multi-item
analysis, two items were moved from
their hypothesized domains to domains
with which they were more highly
correlated. After making this adjustment,
the factor patterns and standardized
regression coefficients indicated that the
items grouped satisfactorily into the four
hypothesized domains.
This model
explained 53% of the observed
variation.
A single factor principal
components analysis was run on the
four domain scores to assess whether
the data supported the use of a total
score.
The results of this analysis
showed that this factor explained 80% of
the total variation in the domain scores
with an eigenvalue of 3.2, supporting the
use of a total YQOL-R perceptual score.
Item Response Theory will be used to
evaluate the scales as soon as a large
enough sample has been obtained.
Severity Ratings and Treatment
Status of Participants
Diagnosis verification forms were
received for 91% percent of the
adolescents’
from
their
primary
physician. Diagnosis verification forms
included an assessment of depression,
ADHD, disability, and 'other' conditions.
Among the group enrolled with their
parent reporting no chronic conditions,

9

physicians of 34 (29%) adolescents
reported that the participant had some
chronic condition, such as asthma,
acne, allergies, enuresis, fatigue, or a
stress-related condition.
Physicians
provided severity scores for 31 of these
individuals with a mean rating of 1.94
(SD=1.03; 1=normal/not ill, 7=very
severely ill). None of these participants
were diagnosed with depression, ADHD,
or mobility disability.
For the ADHD group, physicians
provided ADHD severity ratings and
treatment information for 62 out of 67 of
the adolescents, and additional severity
ratings for seven of these adolescents
who had additional conditions. The
mean ADHD severity rating among this
group was 2.76 (SD=1.07). The chronic
conditions for this group included
allergies (n=1), learning disabilities
(n=8), and thyroid problems (n=1) with a
mean chronic condition severity rating of
3.80 (SD=1.62).
For 57 of the adolescents in the ADHD
group, the physician reported that they
were currently receiving treatment in the
form of medication and six were
receiving
both
medication
and
psychotherapy.
Five
physicians
reported that the adolescent was not
currently receiving treatment. The mean
ADHD severity rating for these five
adolescents was 3.20 (SD=1.30). Three
of these adolescents scored as being at
risk for ADHD on the CADS-A.
For the mobility disability group, 47
physicians completed the diagnosis
verification form, with 45 providing
severity ratings. Among those providing
severity ratings, a diagnosis of birth
defect was verified (e.g., spina bifida,

cerebral palsy) for 30 adolescents, nine
with para/quadriplegia, and two with
breathing problems with a mean severity
rating of 3.87 (SD=1.44).
One
adolescent in this group was also rated
as having ADHD by his/her physician
with a severity rating of 3.0. Only 35
physicians indicated treatment received
by this group, with 33 currently receiving
treatment. The mean severity rating for
the group receiving treatment was 3.85
(SD=1.30).
Scores on the YQOL-R Perceptual
Domains
Table 2 shows the YQOL-R estimated
marginal mean scores (EMM) adjusted
for age and CDI score, and 95%
confidence intervals for the study groups
by recruitment status. Participants in all
groups
scored
highest
on
the
Environment domain and lowest on the
Self domain. To assess differences
between
the
groups,
pairwise
comparisons on the estimated marginal
means were conducted applying a
Bonferroni adjustment for multiple
comparisons.
The results of these
analyses showed that the no condition
group reported significantly higher
(better) ratings than the ADHD group on
all the domains, except General QoL
and total perceptual YQOL-R score.
Compared to the disability group, they
also reported significantly higher ratings
on everything except the Self domain.
There were no differences in YQOL-R
scores between the disability and the
ADHD groups. In these analyses, age
was included as a covariate; however,
there was not a significant association
between age and any of the perceptual
domain scores in these data.

10

Table 2
Adjusted Mean Perceptual YQOL-R Domain and Total Score by Study Group
EMMa

SE

Group
Self

Relationship

Environment

General QoL

Total Perceptual Score

a

CL
Lower

Upper

No Condition

78.77

1.28

76.26

81.29

ADHD

72.72

1.65

69.48

75.97

Disability

73.33

1.84

69.70

76.96

No Condition

80.79

1.43

77.97

83.62

ADHD

73.09

1.85

69.44

76.74

Disability

73.96

2.07

69.88

78.04

No Condition

87.56

1.14

85.31

89.81

ADHD

80.17

1.48

77.25

83.08

Disability

79.21

1.65

75.96

82.47

No Condition

86.85

1.58

83.74

89.95

ADHD

79.87

2.04

75.86

83.88

Disability

77.91

2.28

73.43

82.39

No Condition

82.20

1.14

79.95

84.45

ADHD

75.19

1.48

72.28

78.09

Disability

75.31

1.65

72.07

78.56

Evaluated at covariates appearing in the model: AGE = 14.72, TOTCDI = 11.77.

Note: Means bolded are significantly higher at the p < .05 level than the means for the groups
with name bolded. Bonferroni correction applied
.

Based
upon
physician
diagnosis
verification, 29% of adolescents in the
no-condition group had some sort of
chronic condition (see above section). It
was found that when these cases were
removed, the results were unchanged.
Therefore, these cases were retained in
the analyses.
Only the no condition group had a
sufficient number of females to allow
comparisons by gender within group. A
multivariate analysis of covariance

(MANCOVA) revealed no significant
differences on any of the YQOL-R
perceptual domain scores by gender.
Similarly, when we collapsed the data
across groups there still were no
significant mean differences by gender
on these scales.
Internal Consistency and
Reproducibility
The internal consistency reliabilities of
the YQOL-R perceptual domains and
total perceptual score are shown for the

11

study groups (Table 3). Cronbach’s
alpha exceeded 0.77 for the four
domains and total perceptual score for
all study groups and the combined
sample.
The correlation between the two
instruments measuring the same
construct (YQOL-R and KINDL) was
compared to the correlation of the
YQOL-R with the FDI and the CDI using
a t-test for dependent correlations.

chronic conditions.
The intraclass
correlation coefficients for the five
scales were as follows: Self (0.85),
Relationships
(0.85),
Environment
(0.76), General QoL (0.74), and Total
Perceptual Score (0.78). The s e
coefficients exceeded our criterion of
0.70 and were sufficient for group
comparisons
and
comparable
to
reproducibility scores on other
adolescent subjective measures such as
the Revised Manifest Anxiety Scale
(Reynolds & Richmond, 1985).

One-week
test-retest
data
were
collected only from adolescents without
Table 3
Cronbach Alphas by Study Group for YQOL-R Perceptual Domain Scales
No
Chronic
Condition
(n=116)

ADHD
(n=68)

Mobility
Disability
(n=52)

Total
Sample
(n=236)

Number of
Items in
Scale

Self

.87

.88

.91

.88

14

Relationships

.89

.90

.90

.89

14

Environment

.81

.80

.81

.81

10

General QoL

.82

.77

.83

.81

3

Total Perceptual
Score

.94

.94

.96

.95

41

Domain

In general, all scales of the YQOL-R
correlated highly with the scales of the
KINDL, and the YQOL-R total
perceptual score was correlated with the
KINDL total score at 0.73 indicating a
significant association between the two
measures of perceived QoL

YQOL-R perceptual score and the total
FDI was -0.26, and -.58 with the CDI.
The results of the t-test on the difference
between these correlations showed that
there is a significantly higher correlation
between the YQOL-R and the KINDL
than between the YQOL-R and the FDI
(t226 = 6.61 p < .05). or the CDI (t 226 =
3.66, p < .05).

Two hundred twenty-nine of the
participants
provided
complete
information for these comparisons. The
Pearson’s correlation between the total

In addition to known groups, the CADSA, CDI, and YDS were used to
determine whether the YQOL-R was
sensitive to adolescents who reported

Validation of the Construct

12

real-time symptomatology. The data
shown in Table 4 compare the mean
YQOL-R perceptual domain and total
scores for the study group as classified
by the cut-points for depressive symptoms (CDI) and ADHD symptoms
(CADS-A). YQOL-R perceptual scores
were significantly lower for adolescents
who scored above the depression and

ADHD cut-points. Table 5 presents the
data by disability status. Adolescents
who self-reported that they had a
disability scored significantly lower than
adolescents who did not.
These
findings suggest that the YQOL-R is
sensitive to current symptom status.

Table 4
Discriminant Validity Known Groups: YQOL-R Domain and Total Score Means
and Standard Deviations by Depression and ADHD Screening Criteria
Depression Cut-pointa

YQOL-R
domain
Self

ADHD Cut-pointb

No
(n=200)
Mean
(SD)

Yes
(n=25)
Mean
(SD)

Fc

p

No
(n=200)
Mean
(SD)

78.3 (12.8)

54.9 (14.9)

70.6

.00

78.5 (13.3)

Yes
(n=34)
Mean
(SD)

Fc

p

59.4
61.1
(14.8)
79.6 (14.1) 54.9 (18.0) 60.9 .00 79.7 (14.4)
60.4
50.5
Relationships
(18.1)
85.2 (11.7) 70.2 (17.7) 36.5 .00 85.6 (11.8)
71.9
35.4
Environment
(15.5)
85.7 (15.3) 58.5 (24.6) 58.0 .00 86.0 (15.7)
64.4
49.1
General QoL
(22.9)
81.0 (11.7) 58.6 (14.2) 74.7 .00 81.1 (12.1)
63.2
64.4
Total
(13.8)
a
CDI score greater than 20. bRaw score of 16 or more on the CADS-A ADHD index (the
equivalent of a T-score of 60 or higher). cTest of between-subjects effects.

.00
.00
.00
.00
.00

Table 5
Discriminant Validity Known Groups: YQOL-R Domain and Total Score Means
and Standard Deviations by Disability Status

YQOL-R domain

Self
Relationships
Environment
General QoL
Total

No
(n=90)
Mean (SD)
72.7 (11.4)
80.0 (13.3)
85.1 (12.5)
82.2 (15.1)
79.1 (11.1)

Self-Reported Disabilitya
Yes
Fb
(n=21)
Mean (SD)
65.8 (12.2)
6.07
72.6 (15.9)
4.85
84.4 (12.4)
0.06
71.2 (22.7)
7.28
73.4 (12.6)
4.24

p

.02
.03
.81
.01
.04

aA

positive endorsement of one of four items regarding physical, emotional, or learning disabilities on the
YDS. bUnivariate results. The multivarite results showed that there was a significant difference (Wilks'

13

lambda = .88, p = .01) between the groups on this set of means. The univariate results were then used to
interpret where the groups differed.

YOUTH QUALITY OF LIFE
INSTRUMENT - SURVEILLANCE
VERSION (YQOL-S)
The YQOL-S was developed in concert
with the YQOL-R as an instrument that
could be used for monitoring QoL in the
adolescent population. The items that
comprise the YQOL-S were selected
from the total pool of items in the YQOLR based on their potential relevance for
informing public policy, or in other
words, what we judged were the items
we would use if briefing the governor on
adolescent QoL in the state. The YQOLS has recently been revised from 5
perceptual items to 8 perceptual items
to include the 3 items that comprise the
General Quality of Life Scale from the
YQOL-R.
Construct Validity
The YQOL-S total perceptual score has
been shown to correlate .86 with the
YQOL-R total perceptual score. The
YQOL-S should NOT, however, be
considered a short form of the YQOL-R

since the items of the YQOL-S were not
selected to be representative of the
conceptual model underlying the YQOLR.
Using the YQOL-S
The original 5 perceptual items of the
YQOL-S along with 5 contextual items
were fielded as part of a school-based
study of health risk behaviors among
adolescents (Topolski, et al., 2001).
The contextual items fielded in the
study, like the perceptual items, were
chosen for their relevance to policy
decision-makers. In addition to the
YQOL-S, the YDS (see next section)
was also fielded in this study.
Adolescents from middle schools and
high schools participated in the study
and provided information on health risk
behaviors such as smoking, drinking,
drug use, and engagement in sexually
risky behaviors (e.g., multiple partners
or unprotected sex). The demographics
of the sample are shown in Table 6.

14

Table 6
Demographic Characteristics of YQOL-S School Sample
Junior High
(n=957)
%
47.6

Senior High
(n=1,809)
%
49.1

Total
(n=2,766)
%
48.2

56.6

56.9

56.8

White

69.8

72.9

71.2

Hispanic

11.5

8.7

9.6

Native American

5.7

5.1

5.4

Mixed/Other
Refused/Missing

10.0
3.0

11.6
1.7

11.0
2.8

Female
Living with both biological
parents
Ethnicity:

This table Reprinted from Journal of Adolescent Health Vol 29. Topolski, Patrick, Edwards,
Huebner, Connell & Mount, Quality of life and Health Risk Behaviors among Adolescents, Pages
430, Copyright (2001), with permission from Elsevier Science.

The YQOL-S perceptual items are
located in Appendix D. Any of the 15
contextual items from the YQOL-R may
be used in conjunction with the 8 items
that comprise the YQOL-S perceptual
domain, depending upon which items
are most useful for the particular
application.
In the paper by Topolski, et al. (2001),
both contextual and perceptual items
were scored individually and are
presented in Table 7 below. In general,
significant differences were found on the
YQOL-S item between adolescents who
were engagers in health risk

behaviors and those who abstained
from these behaviors.
In a paper by Edwards, Patrick, and
Topolski (in submission), five contextual
items were used as covariates in an
analysis of covariance (ANCOVA). The
purpose of this analysis was to
determine whether there was a mean
difference in total perceptual YQOL-S
score between the groups after
partialing out the variation that was
attributable to the covariate contextual
variables, self-rated health, depressive
symptoms, and disability status to shed
light on perceived quality of life
differences between adolescents with
and without disabilities.

15

Table 7
Mean Contextual and Perceptual Item Scores d by Health-Risk Behavior Group and
Type of Risk
Tobacco
Mean (Std)

Alcohol
Mean (Std)

Illicit Drugs
Mean (Std)

Sexual Risk
Mean (Std)

Missed Activity Abstainer
Experimenter
Engager

91.42c (19.39)
89.89c (20.60)
84.48ab (28.10)

91.87bc (19.26)
89.80ac (20.89)
85.28ab (27.58)

92.32bc
89.27ac (20.93)
80.94ab (31.67)

90.92c (19.74)
90.25c (19.29)
81.99ab (32.45)

Conversation
Adult

Abstainer
Experimenter
Engager

44.94
44.65
42.27

(33.73)
(32.86)
(34.72)

45.57
45.23
39.54

(33.59)
(32.86)
(35.61)

44.64
45.53c
38.63b

(33.31)
(33.09)
(36.18)

44.26b (32.97)
51.45ac (33.75)
38.21b (35.47)

Unwelcome

Abstainer
Experimenter
Engager

82.93
82.51
78.10

(27.27)
(27.86)
(32.09)

83.09
82.20
78.91

(27.85)
(27.31)
(32.61)

83.65c (26.72)
82.29c (27.66)
74.67ab (35.71)

82.56 (27.21)
84.56c (27.28)
75.44b (35.51)

Family argue

Abstainer
Experimenter
Engager

80.84bc (26.74)
69.27ac (33.30)
60.38ab (36.80)

82.23bc (26.68)
72.73ac (30.84)
59.52ab (38.35)

81.61bc (26.69)
69.45ac (32.18)
57.61ab (39.64)

76.99c (29.48)
71.04c (32.67)
59.61ab (38.62)

Blues

Abstainer
Experimenter
Engager

82.66bc (28.39)
77.81ac (30.46)
65.58ab (36.30)

85.75bc (25.87)
76.06a (31.60)
70.56a (35.57)

85.74bc (25.43)
73.51a (32.36)
67.31a (38.20)

80.80c (29.20)
75.0c (33.31)
66.59ab (36.69)

Get along
parents

Abstainer
Experimenter
Engager

81.0bc (28.25)
71.50ac (29.03)
60.74ab (34.03)

81.89bc (28.44)
74.92ac (27.91)
59.64ab (35.46)

81.77bc (27.38)
72.63ac (27.98)
54.56ab (37.51)

77.03c (29.23)
75.54c (26.34)
59.37ab (37.58)

Forward to
future

Abstainer
Experimenter
Engager

87.44c (22.96)
82.33c (27.18)
73.24ab (34.38)

87.17c (22.90)
84.56c (25.48)
72.71ab (34.80)

88.03c (21.42)
83.79c (25.08)
65.03ab (40.33)

85.88c (23.66)
85.25c (25.72)
66.14ab (38.81)

Alone in life

Abstainer
Experimenter
Engager

74.56c (32.32)
67.99c (33.01)
62.98ab (35.42)

75.54b
67.80a
68.84

74.37b
66.38a
69.23

(32.68)
(33.18)
(35.25)

71.58 (32.50)
76.94c (30.69)
60.21b (37.83)

Good about
self

Abstainer
Experimenter
Engager

81.02bc (25.45)
73.46ac (26.64)
65.06ab (33.02)

83.49bc (24.25)
74.62ac (26.41)
65.99ab (33.66)

81.72bc (24.31)
73.69ac (26.44)
61.61ab (36.74)

77.88c (26.20)
74.79 (28.04)
64.87a (33.97)

Life is…

Abstainer
Experimenter
Engager

76.94bc (24.30)
71.39ac (24.57)
62.55ab (30.95)

78.38bc (23.91)
72.41ac (24.38)
63.51ab (31.55)

78.43bc (23.00)
70.39ac (24.39)
59.69ab (34.69)

74.44c (24.51)
76.66c (22.15)
64.02ab (32.96)

(32.40)
(33.11)
(35.00)

a

Differs significantly from abstainers. b Differs significantly from experimenters. c Differs
significantly from engagers. d All scores are on a 100 point scale. Some items were reverse
scored so that on all variables a higher score represents a higher QoL. This table Reprinted from
Journal of Adolescent Health Vol 29. Topolski, Patrick, Edwards, Huebner, Connell & Mount,
Quality of life and Health Risk Behaviors among Adolescents, Page 432, Copyright (2001), with
permission from Elsevier Science.

Without the covariates in the analysis, it
was found that adolescents with
disabilities reported lower QoL than
adolescents without disabilit ies.

However, self-rated health, depressive
symptoms, and contextual variables
were significant covariates in the
relationship between disability and QoL

16

(18.59)

and including these variables in the
model reduced the amount of variation
so that there was no longer a significant
mean difference between the groups on
total YQOL-S perceptual scores. These
findings suggested channels to improve
the QoL of adolescents with disabilities,
specifically,
reducing
social
and
environmental barriers to promote
inclusion of adolescents with disabilities
in school, family, and community
activities. However, the exact causal
nature of this relationship is unclear in
the absence of longitudinal data.

THE YOUTH DISABILITY
SCREENER (YDS)
Youth with disabilities are a group with
special needs in maintaining health and
function. One problem in identifying
children and youth with disabilities is the
lack of consensus on how to define the
group. Definitions have typically been
based on the presence of specific
medical conditions. Recently, however,
there has been a shift from definition by
condition toward a broader definition of
disability that encompasses health
condition,
function,
activity,
and
participation. The model resulting for
this broader defintion suggests that both
environmental and personal factors play
a role in disability.
The YDS is a 4-item disability screener
based partly on the 1994 National
Health Interview Survey on Disability
(NHIS-D) (National Center for Health
Statistics, 1994), and partly on the
Questionnaire for Identifying Children
with Chronic Conditions (QuICCC)
(Stein, Westbrook, & Bauman, 1997),
both of which are parent-reported. The
QuICCC embodies the 'non-categorical'
approach to disability identification in
that is uses the consequences of
conditions as a method of identifying
children and youth with chronic
conditions and is independent of

diagnosis. The team ultimately decided
upon the following definition of disability
for the basis of the YDS:
Disability is a limitation or inability to
perform important life activities in a
manner considered appropriate for
the age and social role of the person
because of a long-lasting physical,
mental, or emotional condition.
The items comprising the YDS are
contained in Appendix E. The YDS
question regarding whether others
would consider them to have a disability,
was taken from the NHIS-D and has its
origins in the social model of disability,
which indicates that disability resides in
the environment rather than the
individual. Thus, we acknowledged that
some individuals, whom others may
consider to be person with a disability,
do not consider themselves disabled.
The time qualification of 6 months was
based on the work of Stein (1993).
Validation of the YDS
The YDS was fielded as part of the
validation study of the YQOL-R. In this
study it successfully identified 98% of
adolescents with mobility disability, 62%
of those diagnosed with ADHD, and
100% of those with a diagnosis of
depression.
It also identified 19%
(n=18) of adolescents in the no
condition group as having a disability.
Among these adolescents, physicians
for 17 of them indicated that they had
some sort of chronic condition such as
allergies,
asthma,
thyroid/hormone
problem, and fatigue.
Using the YDS
The YDS also was fielded with the
YQOL-S in a school based survey of
2,801 adolescents. In this study 21% of
the students were identified as having
some sort of disability. This proportion

17

is comparable to the national figures
from the 1994-1995 NHIS-D data
(Newacheck et al., 1998).
Table 8 presents a breakdown by
disability element for the adolescents
who screened into the disability sample.

A complete description of how the YDS
was used to assess QoL among
adolescents with and without disabilities
can be found in Edwards, Patrick, and
Topolski (submitted) Quality of Life of
Adolescents
with
Disabilities

Table 8
Frequency of Disability Elements - Junior and High School Sample

Limited Activity
Physical Disability
Emotional Disability
Other Disability

Item N
220
277
269
280

SCORING THE INSTRUMENTS
Scoring the YQOL-R
The YQOL-R produces a QoL profile for
adolescents across four domains (Self,
Relationships,
Environment,
and
General QoL) in addition to a total QoL
Score. Each item is taken to contribute
equally to each subscale. Prior to the
computation of the scales, items which
are negatively worded are reverse
coded so that a higher score represents
a higher QoL. The scores are then
transformed to a 0 to 100 point scale
using the following formula:

tscore 

Item %
7.9 %
9.9 %
9.6%
10.0 %

Cumulative N
220
365
524
590

Cumulative %
7.9
13.0
18.7
21.1

items have responses, a missing value
is assigned to the scale. The scoring
algorithm, written in SPSS syntax, is
included on the enclosed diskette and is
presented in Appendix F.
The total score is derived by taking the
mean of all the transformed perceptual
items (at least 35 of the items must have
responses for the total score to be
computed). The items of the YQOL-R
are presented in Appendix B. The items
comprising each domain scale and the
total score are presented in Table 9
below. Depression has been shown to

actual raw score  lowest possible raw score
*100
possible raw score range

This transformation converts the lowest
and highest possible scores to 0 and
100, respectively.
Scores between
these values represent the percentage
of the total possible score achieved.
Subscales are formed by taking the
mean of the items comprising the scale
(as long as at least 80% of the items
comprising the scale have been
completed). If less than 80% of the

have a negative impact on YQOL-R and
YQOL-S scores. Therefore, it is
recommended that analyses aimed at
assessing group differences in QoL be
freed from their association with
depression by using a measure of
depressive symptomatology such as the
Children’s Depression Inventory (CDI,
Kovacs, 1992) as a covariate in the
analysis.

18

Table 9
Items by Perceptual Domain
Items comprising domain
Self Domain

1 - 12, 21r* and 28r*

Relationship Domain

13 - 20, 22 - 27

Environmental Domain

29 - 38

General QoL Domain

39 - 41

Total Perceptual Score

1 - 41

*r denotes that the item is reverse scored. (See Appendix B for items)
.
Scoring the YQOL-S
their peers (e.g., adolescents with
disabilities sometimes miss out on
Like the YQOL-R the all items are first
activities they want to do more often
transposed to t-scores on a 100-point
than their peers without disabilities).
scale (see formula above). The YQOLThey may also be used as covariates to
S perceptual items can be used
tentatively
assess
the
potential
individually or a total score can be
usefulness of a particular intervention.
calculated. Item number 3 of the YQOLThat is, if we want to consider whether
S (I feel alone in my life) is reverse
an intervention aimed at helping
scored prior to calculating a total score.
adolescents with disabilities to become
The mean of the 8 transformed
more integrated in social activities at
perceptual items is then calculated to
school might help improve their QoL,
form the total YQOL-S perceptual score.
then we could control for "made to feel
If more than 20% of the items are
unwelcome because of how you look"
missing then a missing value is
and assess whether the scores between
assigned. The YQOL-S perceptual items
adolescent with and without disabilities
are presented in Appendix D and the
become more similar.
SPSS syntax for reverse scoring item 3
and computing the total perceptual
score is presented in Appendix G.
Scoring Contextual Items
As with the perceptual items the
contextual items, presented in Appendix
C, are first transformed into t-scores on
a 100-point scale (see formula above)
and negative items are reverse scored
so that a higher score indicates a higher
QoL. The items that are reverse scored
are presented in Table 10 below.
The contextual items are used as
individual indicators. These items are
potentially verifiable, and may be used
to assess specific areas in which
adolescents are thought to differ from

19

Table 10
Contextual Items Reverse Scored
Contextual
Item Number
4
6
7
8
9
10

Variable Label
Behavior caused problems
Serious emotional mental health problems
Couldn’t shake the blues
Family had serious arguments
Missed out on an activity
Felt unwelcome because of looks

Scoring the YDS
The YDS is used to determine whether
an adolescent
has a self-reported
disability. The four items of the YDS are
answered as either "yes" or "no".

Adolescents who endorse any one of
the 4 items as a "yes" are considered to
have a self-reported disability.

20

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24

APPENDIX A
YQOL-R PERCEPTUAL ITEMS BY DOMAIN

Self
1.a I keep trying, even if at first I don't succeed
2. I can handle most difficulties that come my way
3. I am able to do most things as well as I want
4. I feel good about myself
5. I feel I am important to others
6. I feel comfortable with my sexual feelings and behaviors
7. I have enough energy to do the things I want to do
8. I am pleased with how I look
9. I feel comfortable with the amount of stress in my life
10. I feel it is okay if I make mistakes
11. I feel my life has meaning
12. My personal beliefs give me strength
21. I feel alone in my life
28. I feel left out because of who I am
Relationships
13. I feel most adults treat me fairly
14. I feel I am getting the right amount of attention from my family
15. I feel understood by my parents or guardians
16. I feel useful and important to my family
17. I feel my family cares about me
18. My family encourages me to do my best
19. I feel I am getting along with my parents or guardians
20. I feel my parents or guardians allow me to participate in important decisions which
affect me
22. I try to be a role model for others

25

Relationships (continued)
23. I can tell my friends how I really feel
24. I am happy with the friends I have
25. I am satisfied with my social life
26. I feel I can take part in the same activities as others my age
27. People my age treat me with respect
Environment
29. I feel my life is full of interesting things to do
30. I like trying new things
31. I like my neighborhood
32. I look forward to the future
33. My family has enough money to live a decent life
34. I feel safe when I am at home
35. I feel I am getting a good education
36. I know how to get the information that I need
37. I enjoy learning new things
38. I feel safe when I am at school
General QoL
39. I enjoy life
40. I am satisfied with the way my life is now
41. I feel life is worthwhile
Note. Items 2-4, 6-8, 9-11, 13, 14, 15, 19, 20, 23, 25, 26, 27, 33-36, 38, 40, 41 use a 11point rating scale with adjectival anchors "Not at All" to "Completely". Items 1, 5, 12, 1618, 21, 22, 24, 28-32, 37, 39 use a 11-point rating scale with adjectival anchors "Not at
All" to "A Great Deal". Items 21 and 28 must be reverse scored prior to computing
scales.
a

Items numbered as they appear in the YQOL-R.

YQOL items may not be reproduced or modified without the expressed written
consent of the authors.

26

Appendix B: YQOL-R Perceptual Instrument

Evaluating Your Life
Following are some statements that you might make about yourself. Please circle the
number on the scale that best describes how closely the statement applies to you IN
GENERAL. There are no right or wrong answers, we are only interested in how you feel
about your life.
1. I keep trying, even if at first I don't succeed (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

A GREAT DEAL

2. I can handle most difficulties that come my way (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

3. I am able to do most things as well as I want (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

8

9

10

COMPLETELY

9

10

A GREAT DEAL

4. I feel good about myself (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

5. I feel I am important to others (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

6. I feel comfortable with my sexual feelings and behaviors (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

7. I have enough energy to do the things I want to do (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

9

10

COMPLETELY

8. I am pleased with how I look (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9. I feel comfortable with the amount of stress in my life (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

27

10. I feel it is okay if I make mistakes (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

8

9

10

COMPLETELY

10

A GREAT DEAL

11. I feel my life has meaning (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

12. My personal beliefs give me strength (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

13. I feel adults treat me fairly (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

14. I feel I am getting the right amount of attention from my family (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

15. I feel understood by my parents or guardians (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

16. I feel useful and important to my family (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

A GREAT DEAL

9

10

A GREAT DEAL

17. I feel my family cares about me (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

18. My family encourages me to do my best (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

A GREAT DEAL

19. I feel I am getting along with my parents or guardians (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

20. I feel my parents or guardians allow me to participate in important decisions which affect me
(please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

28

21. I feel alone in my life (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

A GREAT DEAL

10

A GREAT DEAL

10

COMPLETELY

9

10

COMPLETELY

9

10

COMPLETELY

22. I try to be a role model for others (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

23. I can tell my friends how I really feel (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

24. I am happy with the friends I have (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

25. I am satisfied with my social life (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

26. I feel I can take part in the same activities as others my age (please circle the
number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

10

COMPLETELY

10

A GREAT DEAL

27. People my age treat me with respect (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

28. I feel left out because of who I am (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

29. I feel my life is full of interesting things to do (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

A GREAT DEAL

8

9

10

A GREAT DEAL

8

9

10

A GREAT DEAL

30. I like trying new things (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

31. I like my neighborhood (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

29

32. I look forward to the future (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

A GREAT DEAL

33. My family has enough money to live a decent life (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

9

10

COMPLETELY

10

COMPLETELY

34. I feel safe when I am at home (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

35. I feel I am getting a good education (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

36. I know how to get the information that I need (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

9

10

A GREAT DEAL

37. I enjoy learning new things (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

38. I feel safe when I am at school (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

5

6

7

8

9

10

A GREAT DEAL

39. I enjoy life (please circle the number)
NOT AT ALL

0

1

2

3

4

40. I am satisfied with the way my life is now (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

7

8

9

10

COMPLETELY

41. I feel life is worthwhile (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

30

APPENDIX C: YQOL-R Contextual Items

Describing Your Life
Following are some statements that you might make about yourself. Please circle the
answer that best describes how closely the statement applies to you. There are no right
or wrong answers, we are only interested in how you feel about your life.
1. During the past 4 weeks, how often did
you have a conversation with an adult
about something that is important to
you? (please circle your answer)
2. During the past 4 weeks, how often did
you help someone who needed it?
(please circle your answer)
3. During the past 4 weeks, how often
have your parents or guardians let you
make your own decisions about what
time you go to bed? (please circle your
answer)
4. During the past 4 weeks, how often
has your behavior caused problems
with your family? (please circle your
answer)
5. During the past 4 weeks, how often did
you spend time with a friend having a
good time outside of school? (please
circle your answer)
6. During the past 4 weeks, how often
have you had serious emotional or
mental health problems that you felt
you needed help with? (please circle
your answer)
7. During the past 4 weeks, how often did
you feel that you could not shake off
the blues, even with help from your
family & friends? (please circle your
answer)
8. During the past 4 weeks, how often
have any of your family members had
serious arguments with one another?
(please circle your answer)

ALMO
NEVER

ST
NEVER

ALMO
NEVER

ST
NEVER

ALMO
NEVER

ST
NEVER

ALMO
NEVER

ST
NEVER

ALMO
NEVER

ST
NEVER

ALMO
NEVER

ST
NEVER

ALMO
NEVER

ST
NEVER

ALMO
NEVER

ST
NEVER

ALMO
9. During the past 4 weeks, how often did
you miss out on an activity that you

NEVER

ST
NEVER

FAIRL
SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

FAIRL
SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

FAIRL
SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

FAIRL
SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

FAIRL
SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

FAIRL
SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

FAIRL
SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

FAIRL
SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

SOMETIM
ES

FAIRL
Y
OFTE

VERY
OFTEN

31

wanted to do because of any physical
or emotional problems you have?
(please circle your answer)
10. During the past 4 weeks, how often
have people your age made you feel
unwelcome because of how you look?
(please circle your answer)
11. During the past 4 weeks, how often
have you been in a good mood?
(please circle your answer)
12. During the past 4 weeks, how often
have you had enough food and a safe
place to live? (please circle your
answer)

N

FAIRL

ALMO
NEVER

ST
NEVER

ST
NEVER

13. During the past 7 days, how many days
did you work around the house, such as
cleaning, cooking, laundry, yard work, or
caring for a pet? (please circle your
answer)
14. During the past 7 days, how many days
did you have dinner with a parent,
guardian, or other adult in your family?
(please circle your answer)
15. During the past 7 days, how many days
were you at home WITHOUT an adult for AT
LEAST THREE HOURS? (please circle
your answer)

ST
NEVER

0
DAYS

0
DAYS

0
DAYS

OFTE

VERY
OFTEN

N

SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

FAIRL

ALMO
NEVER

Y

ES

FAIRL

ALMO
NEVER

SOMETIM

SOMETIM

Y

ES

OFTE

VERY
OFTEN

N

1 DAY

2 DAYS

1 DAY

2 DAYS

1 DAY

2 DAYS

3
DAYS

3
DAYS

3
DAYS

4 OR
MORE
DAYS

4 OR
MORE
DAYS

4 OR
MORE
DAYS

32

APPENDIX D: YQOL-S Perceptual Items

Evaluating Your Life
Following are some statements that you might make about yourself. Please circle the
number on the scale that best describes how closely the statement applies to you. There
are no right or wrong answers, we are only interested in how you feel about your life.
1. I feel I am getting along with my parents or guardians (please circle the
number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

7

8

9

10

A GREAT DEAL

7

8

9

10

A GREAT DEAL

2. I look forward to the future (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

3. I feel alone in my life (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

4. I feel good about myself (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

5

6

7

8

9

10

A GREAT DEAL

5. I enjoy life (please circle the number)
NOT AT ALL

0

1

2

3

4

6. I am satisfied with the way my life is now (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

7

8

9

10

COMPLETELY

7

8

9

10

COMPLETELY

7. I feel life is worthwhile (please circle the number)
NOT AT ALL

0

1

2

3

4

5

6

8. Compared with others my age, I feel my life is… (please circle the number)
MUCH WORSE
THAN OTHERS

0

1

2

3

4

5

6

7

8

9

10

MUCH BETTER
THAN OTHERS

*Add any of the 15 contextual items from the YQOL-R to field with this version

33

APPENDIX E: YDS Items

Your Health and Disabilities
Following are some questions about your health and any disabilities that you might have.
Please circle the answer that best describes how closely the statement applies to you.
NOTE: "LONG-TERM" REFERS TO DIFFICULTIES THAT HAVE LASTED OR ARE
EXPECTED TO LAST 6 MONTHS OR MORE.
1. Do you have any physical disabilities or longterm health problems? (please circle your
answer)

NO

YES

I DON'T KNOW

2. Do you have any long-term emotional
problems or learning disabilities? (please
circle your answer)

NO

YES

I DON'T KNOW

NO

YES

I DON'T KNOW

NO

YES

I DON'T KNOW

3. Would other people consider you to have
ANY disabilities or long-term health
problems, including physical health,
emotional, or learning problems? (please
circle your answer)
4. Are you limited in any activities because of
ANY disabilities or long-term health
problems, including physical health,
emotional, or learning problems? (please
circle your answer)

34

APPENDIX F: SPSS Syntax for Computing YQOL-R Perceptual Scores
*First Step - Recode variables.
RECODE self21 (0=10) (1=9) (2=8) (3=7) (4=6) (5=5) (6=4) (7=3) (8=2) (9=1) (10=0)
(SYSMIS=SYSMIS) INTO self21r .
RECODE Self28 (0=10) (1=9) (2=8) (3=7) (4=6) (5=5) (6=4) (7=3) (8=2) (9=1) (10=0)
(sysmis=sysmis) INTO Self28r.
EXECUTE.
*Second Step - Compute Transformed Scores'
COMPUTE Self1t = ((Self1-0)/10)*100.
COMPUTE Self2t = ((Self2-0)/10)*100.
COMPUTE Self3t = ((Self3-0)/10)*100.
COMPUTE Self4t = ((Self4-0)/10)*100.
COMPUTE Self5t = ((Self5-0)/10)*100.
COMPUTE Self6t =((Self6-0)/10)*100.
COMPUTE Self7t = ((Self7-0)/10)*100.
COMPUTE Self8t = ((Self8-0)/10)*100.
COMPUTE Self9t = ((Self9-0)/10)*100.
COMPUTE Self10t = ((Self10-0)/10)*100.
COMPUTE Self11t = ((Self11-0)/10)*100.
COMPUTE Self12t = ((Self12-0)/10)*100.
COMPUTE Self21rt =((Self21r-0)/10)*100.
COMPUTE Self28rt =((Self28r-0)/10)*100.
COMPUTE Rel13t = ((Rel13-0)/10)*100.
COMPUTE Rel14t = ((Rel14-0)/10)*100.
COMPUTE Rel15t = ((Rel15-0)/10)*100.
COMPUTE Rel16t = ((Rel16-0)/10)*100.
COMPUTE Rel17t = ((Rel17-0)/10)*100.
COMPUTE Rel18t = ((Rel18-0)/10)*100.
COMPUTE Rel19t = ((Rel19-0)/10)*100.
COMPUTE Rel20t = ((Rel20-0)/10)*100.
COMPUTE Rel22t = ((Rel22-0)/10)*100.
COMPUTE Rel23t = ((Rel23-0)/10)*100.
COMPUTE Rel24t = ((Rel24-0)/10)*100.
COMPUTE Rel25t = ((Rel25-0)/10)*100.
COMPUTE Rel26t = ((Rel26-0)/10)*100.
COMPUTE Rel27t = ((Rel27-0)/10)*100.
COMPUTE Env29t = ((Env29-0)/10)*100.
COMPUTE Env30t = ((Env30-0)/10)*100.
COMPUTE Env31t = ((Env31-0)/10)*100.
COMPUTE Env32t = ((Env32-0)/10)*100.
COMPUTE Env33t = ((Env33-0)/10)*100.
COMPUTE Env34t = ((Env34-0)/10)*100.
COMPUTE Env35t = ((Env35-0)/10)*100.
COMPUTE Env36t = ((Env36-0)/10)*100.
COMPUTE Env37t = ((Env37-0)/10)*100.
COMPUTE Env38t = ((Env38-0)/10)*100.
COMPUTE Gen39t = ((Gen39-0)/10)*100.
COMPUTE Gen40t = ((Gen40-0)/10)*100.
COMPUTE Gen41t = ((Gen41-0)/10)*100.
EXECUTE .

35

*Third Step - Adding variable labels and value labels.
VARIABLE LABELS
Self1t 'keep trying'
Self2t 'handle difficulties'
Self3t 'able to do things well'
Self4t 'good about self'
Self5t 'important to others'
Self6t 'comfortable with sexual feelings'
Self7t 'enough energy'
Self8t 'pleased with looks'
Self9t 'comfortable with stress'
Self10t 'okay to make mistakes'
Self11t 'life has meaning'
Self12t 'beliefs give strength'
Self21rt 'alone in life'
Self28rt 'left out '
Rel13t 'adults treat me fairly'
Rel14t 'attention from family'
Rel15t 'understood by parents'
Rel16t 'useful to family'
Rel17t 'family cares'
Rel18t 'family encourages'
Rel19t 'get along with parents'
Rel20t 'participate in decisions'
Rel22t 'role model'
Rel23t 'tell friends feelings'
Rel24t 'happy with friends'
Rel25t 'satisfied with social life'
Rel26t 'take part in activities'
Rel27t 'respect from peers'
Env29t ' life interesting'
Env30t 'try new things'
Env31t 'like neighborhood'
Env32t 'forward to future'
Env33t 'enough money'
Env34t 'safe at home'
Env35t 'good education'
Env36t 'get information'
Env37t 'enjoy learning'
Env38t 'safe at school'
Gen39t 'enjoy life'
Gen40t 'satisfied with life'
Gen41t 'life is worthwhile'.
* Fourth Step - Computing and Labeling Domain and Total Scores.
COMPUTE GenQol=mean.3(Gen39t,Gen40t, Gen41t).
COMPUTE SelfDom=mean.12(Self1t,Self2t,Self3t,Self4t,Self5t,Self6t,Self7t,Self8t,Self9t,Self10t,
Self11t,Self12t,Self21rt,Self28rt).
COMPUTE
RelDom=mean.12(Rel13t,Rel14t,Rel15t,Rel16t,Rel17t,Rel18t,Rel19t,Rel20t,Rel22t,Rel23t,Rel24,
Rel25t,Rel26t,Rel27t).
COMPUTE
EnvDom=mean.8(Env29t,Env30t,Env31t,Env32t,Env33t,Env34t,Env35t,Env36t,Env37t,Env38t).
COMPUTE TotQoL=mean.4(TGenqol,TSelfDom,TRelDom,TEnvDom).

36

EXECUTE.
VARIABLE LABELS
GenQol 'General Quality of Life Domain Score'
SelfDom 'Self Domain Score'
RelDom 'Relationships Domain Score'
EnvDom 'Environment Domain Score'
TotQol 'Total Quality of Life Score'.

37

APPENDIX G: SPSS Syntax for Scoring the YQOL-S
If you will be using both the YQOL-R and YQOL-S it is best to use the same variable names for
scoring both instruments. The code below reflects the variable names from Appendix A, with the
variables listed in the order of the YQOL-S Perceputal items.
*First Step - Recode variables.
RECODE self21 (0=10) (1=9) (2=8) (3=7) (4=6) (5=5) (6=4) (7=3) (8=2) (9=1) (10=0)
(SYSMIS=SYSMIS) INTO self21r .
EXECUTE.
*Second Step – Computing the transformed scores.
COMPUTE Rel19t = ((Rel19-0)/10)*100.
COMPUTE Env32t = ((Env32-0)/10)*100 .
COMPUTE Self21rt =((Self21r-0)/10)*100 .
COMPUTE Self4t = ((Self4-0)/10)*100 .
COMPUTE Gen39t = ((Gen39-0)/10)*100 .
COMPUTE Gen40t = ((Gen40-0)/10)*100 .
COMPUTE Gen41t = ((Gen41-0)/10)*100 .
COMPUTE Com8T = ((Com8-0)/10)*100.
EXECUTE.

*Third Step - Adding variable labels.
VARIABLE LABELS
Self4t 'good about self'
Self21rt 'alone in life'
Rel19t 'get along with parents'
Env32t 'forward to future'
Gen39t 'enjoy life'
Gen40t 'satisfied with life'
Gen41t 'life is worthwhile'
Com8t ‘compared to others my life is…’.
*Forth Step – Computing total Score.
Compute TotQOL=mean.8(self4t,self21rt,rel19t,env32t,gen39t,gen40t,gen41t,com8t).
EXECUTE.
*Fifth Step – Labeling the Total YQOL-S Perceptual Score.
VARIABLE LABEL
TotQOL ‘Total YQOL-S Perceptual Score’.

38

Appendix H
Format for Sending Data Files to SeaQoL Group
The data may be sent to the SeaQoL group using any of the following programs: Ms
Access, Excel, SPSS, SAS or as an tab-delimited ASCII or .rft file. The variables should
be in the order of the YQOL-R (or YQOL-S) with labels as below. In addition to the
YQOL variables, demographic data on each participant should be included. The
demographic variables must include: age, gender, ethnicity; and if available, height and
weight. The data file should also contain information as to what study group each
participant was in and a cover sheet explaining the purpose of the project and how study
groups were defined and identified.
Self1t 'keep trying'
Self2t 'handle difficulties'
Self3t 'able to do things well'
Self4t 'good about self'
Self5t 'important to others'
Self6t 'comfortable with sexual feelings'
Self7t 'enough energy'
Self8t 'pleased with looks'
Self9t 'comfortable with stress'
Self10t 'okay to make mistakes'
Self11t 'life has meaning'
Self12t 'beliefs give strength'
Rel13t 'adults treat me fairly'
Rel14t 'attention from family'
Rel15t 'understood by parents'
Rel16t 'useful to family'
Rel17t 'family cares'
Rel18t 'family encourages'
Rel19t 'get along with parents'
Rel20t 'participate in decisions'
Self21rt 'alone in life'
Rel22t 'role model'
Rel23t 'tell friends feelings'
Rel24t 'happy with friends'
Rel25t 'satisfied with social life'
Rel26t 'take part in activities'
Rel27t 'respect from peers'
Self28rt 'left out '
Env29t ' life interesting'
Env30t 'try new things'
Env31t 'like neighborhood'
Env32t 'forward to future'
Env33t 'enough money'
Env34t 'safe at home'
Env35t 'good education'
Env36t 'get information'
Env37t 'enjoy learning'
Env38t 'safe at school'
Gen39t 'enjoy life'
Gen40t 'satisfied with life'
Gen41t 'life is worthwhile'.

39

Age ‘age of participant’.
Gender ‘sex of participant’
Ethnic ‘ethnicity of participant’.
Height ‘height of participant’.
Weight ‘weight of participant’.
Group ‘study group for participant’.

40



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Title                           : Youth Quality of Life
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