Common Measurement Characteristics of Quality of Life Scales

Three basic measurement characteristics found in a good assessment tool are reliability, validity, and responsiveness.47-49 Reliability is primarily concerned with the stability of items within a test and the uniformity between test scores over time. Two common forms of test reliability are internal consistency (how well items "hang together") and test-retest reliability (the stability of scores over repeated measurements). Test validity deals with the degree to which an instrument accurately measures what it claims to measure. Several types of validity evidence can be examined, such as face validity (degree to which the scale appears to measure the intended domain), content validity (how well test items qualitatively represent the actual content area of study), and criterion validity (how well an instrument's scores correlate with a "gold standard"). Two types of criterion validity are concurrent and predictive (or known-groups) validity. Another type of validity is construct validity (how well test items reflect the latent variable(s) in question), which can be measured through convergent or discriminant associations with other variables. Finally, responsiveness exists when a measure detects QOL changes as a result of disease or

treatment.

Table 1. Physical Health Issues for Cancer Survivors Across Select Patient Reported Outcome Measures

Activities of Daily Living

Benefit Finding Scale

Brief Symptom Inventory

Cancer Rehabilitation Evaluation System

Cancer Worry Scale

Center for Epidemiologic Studies Depression

COPE Scale

Dyadic Adjustment Scale

EORTC Quality of Life Questionnaire-Core

Ferrans and Powers QOL Index

Functional Assessment of Cancer Therapy

Functional Living Index Cancer

HOPE Scale

Impact of Events Scale

Instrumental Activities of Daily Living

Long-Term Quality of Life

Medical Outcomes Study short forms:

Memorial Symptom Assessment Scale

Nottingham Health Profile

Profile of Mood States

Psychosocial Adjustment to Illness Scale

Quality of Life-Cancer Survivors

Quality of Life in Adult Cancer Survivors

Rotterdam Symptom Checklist

Sexual Activity Questionnaire

Spitzer Quality of Life Index

UCLA Prostate Cancer Index

T3

ADLs

x

x

x

x

x

x

x

x

x

x

Bowel/bladder

x

x

x

x

x

x

x

■2 4

IADLs

x

x

x

x

x

x

x

x

x

Mobility/ ambulation

x

x

x

x

x

ta

Oral expression

x

x

Sexual activity

x

x

x

x

x

x

x

x

x

x

x

x

Alopecia

x

x

x

x

x

x

Appetite/weight

x

x

x

x

x

x

x

x

x

Auditory problems

x

x

Bloated sensation

x

x

x

Cramps/stiffness

x

Dizziness

x

x

x

x

Dry mouth

x

x

x

x

Fatigue/energy

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

Headache

x

x

x

0

Hormonal change

x

x

x

Indigestion

x

x

Infertility

x

x

x

a

Skin problems

x

x

Lymphedema and swelling

x

x

x

Ö

Mouth sores

x

x

Musculoskeletal

x

x

0

Nausea/vomiting

x

x

x

x

x

x

x

x

co

Numbness/tingling

x

x

x

x

x

x

x

Pain and discomfort

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

Olfactory changes

x

x

Shortness of breath

x

x

x

x

x

Sleep problems

x

x

x

x

x

x

x

x

x

x

x

Swallowing difficulty

x

x

x

x

x

Sweats

x

x

x

Taste changes

x

x

x

x

Tremors

x

Visual problems

x

x

x

00 OS

Spiritual & Existential Concerns

Cognitive Function

Psychological Well—being

Emotional Distress

1 Time Orientation Changes

1 Spirituality

1 Sense of Meaning 8c Purpose

1 Life Satisfaction and Appreciation

1 Goal/Value Shifting |

1 End of Life Issues

1 Acceptance/Patience

1 Memory Difficulty

1 Executive Function

1 Confusion

1 Attention Problems

1 Posttraumatic Growth

1 Optimism

1 Mastery 8c Control

1 Healthcare Efficacy

1 Happiness/Well-being

1 Fighting Spirit

1 Coping 1

1 Assertiveness

1 Worry/Anxiety

1 Survivorship Guilt

1 Sadness/Depression

1 Psychosis

1 Posttraumatic Stress

1 Irritability/Anger

1 Hardship/Hassle

1 Fear, Uncertainty, Vulnerability

1 Body Image Issues

X

X

X

Affect Balance Scale

X

X

X

X

Benefit Finding Scale

X

X

X

X

X

X

X

X

Brief Symptom Inventory

X

X

X

X

X

X

X

X

X

X

X

Cancer Rehabilitation Evaluation System

X

X

Cancer Worry Scale

X

X

X

X

X

X

X

Center for Epidemiologic Studies Depression

X

X

X

X

X

X

X

COPE Scale

X

Dyadic Adjustment Scale

X

X

X

X

X

X

X

EORTC Quality of Life Questionnaire-Core

X

X

X

X

X

X

Ferrans and Powers QOL Index

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

Functional Assessment of Cancer Therapy

X

X

X

X

X

X

X

X

Functional Living Index Cancer

X

Goal Interference Scale

X

X

X

X

X

HOPE Scale

X

X

X

X

X

Hospital Anxiety and Depression Scale

X

Impact of Events Scale

X

Life Orientation Test-Revised

X

X

X

X

X

X

X

Long-Term Quality of Life

X

X

X

Medical Outcomes Study short forms:

X

X

X

X

X

Memorial Symptom Assessment Scale

X

X

X

X

X

X

X

X

X

X

X

X

X

X

X

Mental Adjustment to Cancer Scale

X

X

X

X

Nottingham Health Profile

X

X

X

X

X

Posttraumatic Growth Inventory

X

X

X

X

Posttraumatic Stress Disorder Checklist

X

X

X

X

X

X

X

X

Profile of Mood States

X

X

X

X

X

Psychosocial Adjustment to Illness Scale

X

X

X

X

X

X

X

X

X

X

X

X

X

X

Quality of Life-Cancer Survivors

X

X

X

X

X

X

X

X

X

X

X

X

X

Quality of Life in Adult Cancer Survivors

X

X

X

Rotterdam Sy mptom Checklist

X

X

X

X

X

X

Spitzer Quality of Life Index

in e vi ri

m T3

Table 3. Social Health Issues for Cancer Survivors Across Select Patient Reported Outcome Measures

Affect Balance Scale

Benefit Finding Scale

Brief Symptom Inventory

Cancer Rehabilitation Evaluation System

Center for Epidemiologic Studies Depression

COPE Scale

Duke-UNC Functional Social Support

Dyadic Adjustment Scale

EORTC Quality of Life Questionnaire-Core

Ferrans and Powers QOL Index

Functional Assessment of Cancer Therapy

Functional Living Index Cancer

Long-Term Quality of Life

Medical Outcomes Study short forms:

Mental Adjustment to Cancer Scale

Nottingham Health Profile

Posttraumatic Growth Inventory

Psychosocial Adjustment to Illness Scale

Quality of Life-Cancer Survivors

Quality of Life in Adult Cancer Survivors

Spitzer Quality of Life Index

UCLA Prostate Cancer Index

Socioeconomic challenges

Financial strain

X

X

X

X

X

X

X

Occupational and career changes

X

X

X

X

X

X

X

X

X

X

Role and relationship changes

Altruism and involvement

X

X

X

X

Isolation and alienation

X

X

X

X

X

X

X

X

X

X

X

Relationship changes

X

X

X

X

X

X

X

X

X

X

X

X

X

Role changes

X

X

X

X

Perceived support and satisfaction

Caregiver burden guilt

X

X

Discrimination and stigma

X

X

X

X

Healthcare satisfaction

X

X

X

X

X

Perceived social support

X

X

X

X

X

X

X

X

X

X

X

X

X

Participation

Recreation/leisure

X

X

X

X

X

X

Socialization

X

X

X

X

3.2. Generic Measures

Affect Balance Scale (ABS).50-51 The ABS was developed to measure psychological well-being and contains 10 items; five that deal with positive affect and five that deal with negative affect. It has been used in a variety of settings and populations, including cancer survivors.52,53 Respondents are instructed to focus on their feelings during the past few weeks and reply with a yes (positive) or no (negative) answer. A Positive Affect Scale score (range from 0 to 5) is computed by summing the five positive affect items; a Negative Affect Scale score (range from 0 to 5) is obtained by summing the five negative affect questions. A total score (range from 0 to 10) is computed by subtracting negative affect scale scores from positive affect scale scores and adding five.

Brief Symptom Inventory-53 (BSI).54 The BSI-53 is a 53-item scale reflecting nine symptom dimensions, including somatization, obsessive-compulsive, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation, and psychoticism.54 Respondent psychological distress is calculated through subscale and global scores, which distinguish emotional from physical aspects of distress. This distinction is useful in oncology settings where it can be convenient to separate psychological from disease- or treatment-related effects. It has been used extensively with cancer patient samples, including survivors of breast cancer55-57 and pediatric sarcoma58 and mixed samples.59,60 Scores have demonstrated adequate internal consistency (Cronbach's alpha = 0.71-0.85) and test-retest reliability (Pearson's r = 0.68-0.91). Convergent and criterion-related validity has also been reported with cancer samples.

Center for Epidemiological Studies-Depression Scale (CES-D).61 The CES-D isa20-item self-administered inventory designed to assess depression in the general population. The scale is comprised of four subscales: somatic-retarded activity, depressed affect, positive affect, and interpersonal relations. Adequate reliability (Cronbach's alpha = 0.84-0.90; test-retest = 0.51-0.67) and validity (known groups, concurrent, discriminant) have been reported.61 The CES-D has been used with a variety of medically ill populations, including cancer survivors such as bone marrow transplant,53

breast,62-65 and lung.66

Dispositional Hope Scale (DHS).67 The DHS is a 12-item self-report measure of hope; four items are characterized by "agency for goals," four reflect "pathways toward goals," and four are distracters (not scored). Scores are rated on an 8-point continuum (1 = definitely false; 8 = definitely true). Adequate internal consistency reliability has been reported (Cronbach's alpha = 0.80) as well as construct, discriminant, and convergent validity.67,68

Duke-UNC Functional Social Support Questionnaire (FSSQ).69 The FSSQ is an 8-item self-report measure of perceived functional support with medical patients. Originally organized into four support subscales (confidant, affective, instrumental, and quantity), factor analysis yielded two cohesive factors: Confidant support (5 items) and Affective support (3 items). Respondents rate each item on a 5-point scale from 1 (much less than I would like) to 5 (as much as I would like), with higher scores indicating higher perceived support. The scale has acceptable test-retest reliability (Pearson's r = 0.66) and item-remainder correlations were used to assess internal consistency (Pearson's r = 0.50-0.85). It has also demonstrated adequate construct, concurrent, and discriminant validity.69-72 This scale has been used in research with breast cancer survivors.73

Dyadic Adjustment Scale (DAS).74 The DAS is a 32-item scale designed to measure the quality of marital relationships. The measure consists of the following subscales:

Dyadic Consensus, Dyadic Satisfaction, Dyadic Cohesion, and Affectional Expression. Cronbach's alpha coefficients for the subscales were 0.90, 0.94, 0.86, 0.73, respectively. Coefficient alpha for the total scale was 0.96. Each of the scale's items has been found to correlate significantly with marital status among a sample including both married and divorced individuals. The DAS is significantly and highly correlated with another widely-used scale of marital adjustment74 and has been used in previous research with cancer patients, e.g.,75 - 78 and cancer survivors.65

Goal Interference Scale (GIS).40,79 The GIS is a 20-item self-report assessment tool that measures the extent to which one's disease and/or treatment has interfered with progress on personal projects (e.g., personal, family, health, career/work). Respondents are instructed to list as many personal projects they are engaged in at the present time (and have been over the past 2 months) and choose the four most important ones, ranking them from 1 (most important) to 4 (least important). Next, a series of questions probes the extent and speed of their progress, including how satisfied they are with their progress/effort and how meaningful these projects are to them. Used with cancer patients, the psychometric properties of the GIS appear to be quite good, with good internal consistency reliability (0.89), convergent validity, and known groups validity.40,79

Hospital Anxiety and Depression Scale (HADS).80 The HADS is a 14-item self-report assessment tool that measures anxiety and depression. It has been used extensively in oncology settings for screening and clinical research purposes.81-89 Although several studies have found the HADS to have sound psychometric properties in cancer studies,82,86,87 it has been reported that it may be insensitive to differentiate anxiety and depression among cancer patients; therefore, some have called for its use as a global measure of distress.82,83,85

Impact of Event Scale (IES).90 The IES is a 15-item self-report scale designed to measure two major psychological responses to stressful life events: avoidance and intrusion. The respondent reports the frequency of experiencing either avoidance or intrusion of specified thoughts during the past 7 days. Subscale scores are calculated for Intrusion (7 items; alpha = 0.78) and Avoidance (8 items; alpha = 0.82). Split-half reliability of the total scale is 0.86.90 The IES has been used extensively in studies with cancer patients59,91 and cancer survivors.55,92,93

Instrumental Activities of Daily Living Scale (IADL).94 The IADL questionnaire assess the extent to which a person needs assistance in completing eight tasks related to living independently: using the telephone, accessing transportation, shopping, food preparation, housekeeping/handyman work, doing laundry, taking medications, and managing finances.94 The three possible responses to each category include: require assistance to perform the task (one point each), require some assistance to perform the task (zero points), and unable to do the task (zero points). Although this has been used with cancer survivors95 it is less sensitive due to ceiling effects.

Katz Index of Independence in Activities of Daily Living (KI-ADL).96 The KI-ADL assesses performance in six areas of physical functioning: bathing, dressing, toileting, transferring, continence, and feeding. Scored yes or no for independence in each area, a six indicates full functioning; a four indicates moderate impairment and a score of two indicates severe impairment of functioning. Correlating highly with measures of physical functioning, these scores can be less sensitive with cancer populations because of ceiling effects.

Life Orientation Test-Revised (LOT-R).98 The LOT-R is a 10-item self-report measure (6 targetitems; 4 fillers) designed to assess individual differences in dispositional optimism and pessimism. Ratings are made on a 5-point Likert scale that ranges from "I agree a lot" (1) to "I disagree a lot" (5). In past research with cancer patients, it has shown good reliability (Cronbach's alpha = 0.78) and construct validity.98

Medical Outcomes Study Short-Forms 12 & 36Health Survey (SF-12 & SF-36).99-101 The SF-36 is a generic self-report instrument used to assess QOL. It is comprised of eight subscales: physical functioning, role limitations due to physical problems, social functioning, bodily pain, general mental health, role limitations due to emotional problems, vitality, and general health perceptions. The SF-12 is a 12-item short-form health survey derived from the longer SF-36 instrument and encompasses the same eight dimensions with fewer items.99 Convergent validity and reliability characteristics of the SF-36 have been well established (Cronbach's alpha = 0.780.93). The SF-36 has previously been used with cancer patients as well as cancer survivors, including breast63,102 and lung cancer.103

Nottingham Health Profile (NHP).104 The NHP is a 38-item self-report questionnaire that measures subjective health status across the following domains: pain, emotional reactions, sleep, social isolation, energy, and physical mobility. Responses are based on yes/no statements about ones life. Good reliability evidence has been reported in other medical conditions (Cronbach's alpha = 0.68-0.74; 0.63-0.80).105-108

Posttraumatic Growth Inventory (PTGI).109 The PTGI is a 21-item scale designed to assess a person's perception of benefit related to experiencing a traumatic event. Respondents are asked to rate the degree to which they experienced a positive change on a scale from zero to five. Factor analysis revealed five possible subscales (New possibilities, Relating to others, Personal strength, Spiritual change, and Appreciation of life)—each demonstrating adequate internal consistency (Cronbach's alpha = 0.67-0.85) in addition to the total score (Cronbach's alpha = 0.90). Construct validity has been reported by the scale's authors. It has been used in several cancer survivor studies, including hematologic,16 breast,18,63 and prostate.110

Posttraumatic Stress Disorder Checklist-Civilian (PCL-C).111 The PCL-C is a 17-item self-report scale that corresponds to criteria B, C, and D for posttraumatic stress disorder of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). Items from three symptom clusters (reexperiencing, numbing/avoidance, and hyperarousal) are rated on a 5-point scale based on experiences over the past month. Used in survivor studies with bone marrow transplantation,112 and breast cancer,56,113,114 the PCL-C has demonstrated good internal consistency reliability (Cronbach's alpha = 0.93) and construct validity.111,115

Profile of Mood States—Short Form (POMS-SF).116 The POMS-SF is a 30-item measure of recent affective state. It yields a total mood disturbance score as well as subscale score for depression, tension, confusion, anger, fatigue, and vigor. Individual subscale alpha coefficients have been reported to be: depression (0.81-0.83), tension (0.86-0.88), confusion (0.75-0.79), anger (0.87-0.89), fatigue (0.89-0.91), and vigor (0.89-0.90).116 The POMS has been used extensively in studies of BMT patients.117-119 It has been used extensively in survivorship studies, including breast,120-124 and prostate.125,126

Psychological Adjustment to Illness Scale—Self Report (PAIS-SR).127 The PAIS-SR is a 46-item self-report scale that measures psychosocial adjustment across seven sub-scales: health orientation, vocational environment, domestic environment, sexual relationship, extended family environment, social environment, and psychological distress. Using a 4-point rating scale, respondents are instructed to indicate whether they have no problems (0) or multiple problems (3). Internal consistency (Cronbach's alpha) for PAIS-SR scores ranged between 0.68 and 0.93 in a sample of lung and mixed cancer patients.127 Construct validity was also reported for the PAIS-SR, which has been used in a variety of survivorship studies.128-130

Spitzer QQuality of Life Index—Patient Version (QL-I).131 The QL-I is a 5-item QOL index designed to assess QOL domains such as health, activity, daily living, support, and outlook. Originally designed as a physician-rated measure, it is also now used as a patient reported outcome. Questions are rated on a 3-point scale (0-2) and has been used in cancer studies. It has demonstrated discriminant validity as well as satisfactory internal consistency reliability (Cronbach's alpha = 0.78).131

3.3. Cancer-Specific Measures

Benefit Finding Scale (BFS, 17 item version).14,132 The BFS is a 17-item scale that measures the perceived positive contributions of being diagnosed and treated for breast cancer. Originally developed by Tomich and Helgeson14 this version includes additional items reflecting global positive domains. Responses are rated on a 5-point scale ranging from "I disagree a lot" to "I agree a lot" with items reflecting global positive domains (acceptance, interpersonal growth, sense of purpose, spiritual growth, priorities, becoming a stronger person, realizing support from friends) as well as concrete qualities (time management, renewing interest in activities, and family involvement). Forming a single factor, scores have demonstrated strong internal consistency (Cronbach's alpha = 0.95). Although studies are mixed, some preliminary evidence suggests that earlier benefit finding predicts long-term psychosocial adjustment.

Cancer Rehabilitation Evaluation System (CARES).133,1134 The CARES is a 139-item self-administered rehabilitation and QOL instrument, while the CARES-Short Form (CARES-SF) contains 59 items. Both are highly correlated (Pearson's r = 0.98)134 and are comprised of a list of statements reflecting problems encountered by cancer patients. They produce five summary scores reflecting physical, psychosocial, medical interaction, marital, and sexual dimensions, and a total score. The CARES predicts extent of disease in colorectal and lung cancer patients and has been found to discriminate between extensive disease and no evidence of disease in prostate cancer patients. Ganz et al.133 also demonstrated the sensitivity of the CARES to improvement in QOL in breast cancer patients over a 13-month period. Used with a wide variety of cancer survivor samples including breast,102,120,121,133,135,1136 prostate,136,137 and mixed,138 adequate test-retest reliability, internal consistency (Cronbach's alpha = 0.88), and concurrent validity has also been reported.133,134,139

Coping Orientations to Problems Experienced Inventory (COPE).140 The COPE is a theoretically based, 60-item self-report inventory that assesses a variety of coping strategies, from functional to dysfunctional.140 Consisting of three primary item groupings (problem focused, emotional focused, and dysfunctional), scales include: active coping, planning, restraint coping, instrumental and emotional support seeking, suppression of competing activities, positive reinterpretation, religion, humor, acceptance, emotional venting, denial, behavioral and mental disengagement, and substance use. Respondents are asked to rate the degree to which they typically use each coping strategy when under stress. Ratings are made on a 4-point Likert scale that ranges from "I haven't been doing this at all" (1) to "I've been doing this a lot" (4). Shortened to 28 items, the Brief COPE scale measures these 14 subscales and has demonstrated good internal consistency (Cronbach's alpha = 0.50-0.90) and has demonstrated good construct validity.

European Organization for Research and Treatment of Cancer Quality of Life Questionnaire—CORE 30 (EORTC QLQ-C30).141 The EORTC QLQ-C30 measures physical, role, emotional, and social functioning, along with disease-specific symptoms, financial impact, and global QOL. In addition to the CORE questionnaire, one may also administer modules related to tumor site, treatment approach, or a QOL domain. Aaronson et al.141 reported acceptable to good reliability coefficients for individual scales (Cronbach's alpha = 0.65-0.92) and seven scales predict differences in patient clinical status.141,142 It has been used in numerous studies with cancer survivors, including breast,56,107,143,144 Hodgkin lymphoma,145 colorectal,97 prostate,107,146-151 and lung.152-159

Functional Assessment of Cancer Therapy—General, Version 4 (FACT-G).27 The FACT-G is a 27-item self-report measure of general questions divided into four primary HRQL domains: Physical Well-Being, Social/Family Well-Being, Emotional Well-Being, and Functional Well-Being. The validation of this core measure in cancer and other chronic diseases has allowed for the evolution of multiple disease, treatment, condition, and non-cancer-specific subscales (over 40 different FACIT scales and 9 symptom indices), which are considered to be part of a larger measurement system called the Functional Assessment of Chronic Illness Therapy (FACIT). Each is intended to be as specific as necessary to capture the clinically-relevant problems associated with a given condition or symptom, yet general enough to allow for comparison across diseases, and extension, as appropriate, to other chronic medical conditions. The FACT-G and FACIT scales and indices have demonstrated adequate internal consistency (Cronbach's alpha = 0.56-0.89) a

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