Appendix A. Characteristics of generic and breast cancer-specific quality of life instruments (Instruments are listed alphabetically). Measure Purpose Domains Scale 1 Beck Depression Inventory (BDI) [1] Designed to measure depression One domain: Depression Inventory produces a total score and is scaled on a four point Likert scale Past two weeks 21 2 Breast Cancer Chemotherapy Questionnaire (BCQ) [3] Developed to measure outcomes of women with stage II breast cancer receiving adjuvant chemotherapy Seven domains: Consequences of hair loss; emotional dysfunction; physical symptoms; trouble and inconvenience associated with treatment; fatigue; nausea; positive wellbeing Seven point Likert scale ranging in responses Past two weeks 3 Breast Cancer Prevention Trial Symptom Checklist (BCPT) [4, 5] Designed to examine the physical and psychological symptoms associated with menopause and Tamoxifen usage Eight domains: Hot flashes; nausea; bladder control; vaginal problems; musculoskeletal pain; cognitive problems; weight problems; arm problems Five point Likert scale ranging from 0 (Not at all) to 4 (Extremely) 4 Cancer Needs Questionnaire – Short Form (CNQ-SF) [6] Developed to assess cancer patients’ needs Five domains: Psychological; health information; physical and daily living; patient care and support; interpersonal communication 5 Cancer Rehabilitation Evaluation System (CARES-SF) [8] Developed to assess patients’ cancerrelated problems 6 Center for Epidemiologic Studies Depression Scale-10 (CES-D) Designed to measure depression 1 Reliability Validity Selfadministered (5 minutes) Reliabilitie s ranged from .48 to .86 Correlation coefficients between the BDI and clinical ratings yield correlations from .55 to .96 [2] 30 Intervieweradministered (10-15 minutes) Internal consistenc y ranging from .89 to .91 Correlation coefficients between BCQ and Spitzer QL-Index was .62 Past four weeks 43 Self-report (estimated 30 minutes) Reliability was .81 Correlation coefficients between BCPT and SF-36 were -.40 and -.36 Five point Likert scale ranging from 1 (No need/not applicable) to 5 (High need for help) Unspecified 32 Selfadministered (estimated 15-20 minutes) Reliability ranged from .77 to .94 Correlation coefficients between CNQSF and EORTC QLQ-C30 and BDI ranged from .23 to .58 [7] Six domains: Physical; psychosocial; medical interaction; marital; sexual; global Five point Likert scale ranging from 0 (Not at all) to 4 (Very much) Past month 59 Selfadministered (average 20 minutes; Range of 10-34 minutes) Reliabilitie s ranged from .39 to .82 Correlation coefficients between the CARES-SF and the Memorial Symptom Assessment Scale (MSAS) ranged between .53 to .73 [9] One domain: Depression Four point Likert scale ranging from 0 (Rarely) to 3 (Most of the time) and summed across the ten items to provide a total score. Past week 10 Selfadministered (estimated 5 minutes) Reliability of .92[10]; Reliability for CES-D 20 item scale is .86 [11] Correctly identifies 98% of depressed patients as having major depression [10] Time frame No. of items Administered by and (completion time) 7 European Organization for Research and Treatment of Cancer QOL Breast Cancer Specific Version (EORTC QLQBR23) [12] Designed to measure QOL in the breast cancer population at various stages and with patients with differing modalities Five domains: Therapy side effects; arm symptoms; breast symptoms; body image; sexual functioning Four point Likert scale ranging from 1 (Not at all) to 4 (Very much) Past week 23 Self-report (10 minutes) Reliabilitie s ranged from .70 to .91 Discriminant validity of mutually exclusive groups based on their initial performance status scores produced medium to large effect sizes ranging from .43 to 1.1 8 European Organization for Research and Treatment of Cancer QOL Cancer Specific Version (EORTC QLQC30) [13] Cancer specific questionnaire designed to measure QOL in the cancer population Nine domains: Physical; role, cognitive; emotional; social; fatigue; pain; nausea and vomiting; global health status and quality of life Four point Likert scale ranging from 1 (Not at all) to 4 (Very much); 1 (Very poor) to 7 (Excellent) Past week 30 Selfadministered (Under 10 minutes) Reliabilitie s ranged from .69 to .90.[14] Test-retest reliabilities ranged from .63 to .87 [15] Correlation coefficient between the QLQ-C30 and the Profile of Mood States (POMS) was .56 [16]44]. 9 Edmonton Symptom Assessment System (ESAS) [17] Designed to measure a variety of symptoms Nine domains: Pain; tiredness; nausea; depression; anxiety; drowsiness; appetite; well-being; shortness of breath Scaled using a visual analog scale At the time of assessment 9 Selfadministered (estimated 5 minutes) Internal consistenc y reliability of .39 to .86 Correlation coefficient between the ESAS and the FACT was .85 [18] 10 Functional Assessment of Cancer Therapy – Breast Symptom Index (FACT-B) [19] Specific to breast cancer patients Six domains: Physical well-being; social/family wellbeing; emotional wellbeing; functional wellbeing; relationship with doctor; additional concerns Five point Likert scale ranging from 0 (Not at all) to 4 (Very much) Past week 37 Self-report or intervieweradministered (estimated 25 minutes) Internal consistenc y was .90 Spearman correlations between FBSI and FACT ranged from .34 to .84 11 Functional Assessment of Cancer Therapy – Endocrine System (FACT-ES) [20] Focus on endocrine concerns experienced during breast cancer treatment One domain: Endocrine concerns Five point Likert scale ranging from 0 (Not at all) to 4 (Very much) and comprises a total score Past week 18 Self-report or intervieweradministered (estimated 10 minutes) Internal consistenc y was .79 Test-retest reliability was .93 Discriminant validity of known groups comparing adjuvant chemotherapy and those without any endocrine therapy produced a significant t score with the adjuvant chemotherapy group experiencing more endocrine symptoms than the nonendocrine therapy group 12 Functional Living Index – Cancer (FLIC) [21] Designed to assess the effect that cancer treatment and symptoms have on functional ability in all areas of life Five domains: Physical functioning; mental functioning; social functioning; general health/wellbeing; gastrointestinal symptoms Seven point Likert-type linear analog scale. Patients are instructed to answer the questions by placing a vertical line at the point Past two weeks; Past month; Today 22 Selfadministered (Under 10 minutes) Reliability ranged from .64 to .87.[21] Correlation coefficients between FLIC and SF-36 ranged from .50 to .62 [22] 2 in the scale that best represents their response based on various Likert points along the scale 13 Geriatric Depression Scale – Short Form (GDS-SF) [23] Designed to assess depression in the elderly Four domains: Positive mood; sad mood; boredom, memory problems, and energy level; staying home Scaled in a yes/no format Past week 15 Selfadministered (estimated 5 minutes) Internal consistenc y ranged from .60 to .77 [24] Cut off score of greater than or equal to 7 in correctly diagnosing depression 79% of the time [25] 14 Hospital Anxiety and Depression Scale (HADS) [26] Developed to measure anxiety and depression Two domains: Anxiety and depression Four point Likert scale Past week 14 Selfadministered (estimated 5-10 minutes) Reliabilitie s of .98 for total score, .85 for anxiety subscale, and .80 for depression subscale. Test-retest reliability has produced coefficient s over a two month period for the total score, anxiety subscale, and depression subscale (.79, .79, and .63 respectivel y).[27] Correlation coefficients between the HADS and Symptom Checklist 90 scale were .73 (anxiety subscale) and .67 (depression subscale [28]). 15 Life Satisfaction Questionnaire (LSQ) [14] Developed to measure one’s general sense of satisfaction with life as it relates to school, relationships, leisure time, religious practices, and overall health, specifically for women with breast cancer Six domains: Quality of family relation; physical symptoms; socioeconomic situation; quality of daily activities; sickness impact; and quality of close friend relation Seven point Likert scale ranging from 1 (very much) to 7 (Not at all) Past week 32 Self-report (estimated 20 minutes) Reliabilitie s ranged from .62 to .92 Correlation coefficients between LSQ and EORTC QLQ-C30 were -.68 to .54 16 Medical Outcome Short Form Health Survey (SF-36) [29] Developed to assess health-related QOL Eight domains: Physical functioning; role limitations due to physical health; role limitations due to emotional problems; energy/fatigue; emotional well-being; social functioning; bodily pain; general health Scaled using various scales Unspecified 36 Selfadministered (5 minutes) Reliability ranged from .74 to .98 [30] Correlation coefficients between the SF-36 and the General health Questionnaire (GHQ-29) were -.35 to =.61 (correlations are negative because the two scales run in opposite directions) [31] 3 17 Quality of Life Index (QL-Index) [32] Designed to assess health outcomes of those with cancer and other chronic diseases Five domains: Activity; daily living; health; support; outlook Three point Likert Scale Past two weeks 5 Intervieweradministered or self-administered (Under 10 minutes) Internal consistenc y of .78 Correlation coefficients ranged from .40 to .63 .[32] 18 Rotterdam Symptoms Checklist – Modified [33] Developed to assess symptom-related distress among cancer patients Two domains: Physical distress and miscellaneous variables Four point Likert scale ranging from 1 (Not at all) to 4 (Very much) Past week 28 Selfadministered (8 minutes) Reliability of .88 Correlation coefficients ranged from .59 to -.61 when the Rotterdam Symptoms ChecklistModified was compared with the SF-36 (correlations are negative because the two scales run in opposite directions) [33] 19 Satisfaction with Life Domains Scale for Breast Cancer (SLDS-BC) [34] Developed to measure satifaction with life among breast cancer patients Five domains: Social functioning; appearance; physical functioning; communication with medical providers; spirituality Seven point Likert-type scale ranging from 1 (A “delighted” face) to 7 (A “very unhappy” face Unspecified 32 Self-report (estimated 20 minutes) Reliabilitie s ranged from .90 to .93 Correlation coefficient between SLDSBC and FACTB was .59 20 World Health Organization Quality of Life – Brief Version (WHOQOL-BREF) [35] Designed to examine domain level profiles assessing quality of life Four domains: Physical health; psychological; social relationships; environment Five point Likert scale with varying anchors Past two weeks 26 Selfadministered (estimated 15-20 minutes) Reliability ranged from .66 to .84. Similar alphas have been shown for test-retest reliability ranging from .66 to .87 Correlation coefficients between the WHOQOLBREF and SF36 ranged from .36 to .78 [36] Zung self-rating depression scale [37] Designed to measure depression Depression Four point Likert scale ranging from 1 (A little of the time) to 4 (Most of the time) Last 5 days 20 Selfadministered (estimated 10 minutes) Internal consistenc y of .58[38] Scale has produced good discriminant validity as it was found to be the primary discriminating variable in distinguishing depressed from nondepressed participants. [39] 21 References: 1. 2. 4 Radloff L: The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement 1977, 1:385-401. Beck AT, Steer RA, Garbin MG: Psychometric properties of the Beck Depression Inventory: Twenty-five Years of Evaluation. 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