Table 1 Instrument Evaluation
Instrument Purpose & Administration Items and Domains Question Format Conceptual and Measurement Model Competencybased model of coping. Validity Content Validity Literature. Interviews with patients & family. Expert review. Construct Validity Correlated with SCL-90, KPS, DAS. Good agreement with interviewers. Correlated well with CARES, FLIC, KPS, DAS. Large sample sizes. Reliability Internal Consistency Domains ranged from .88 to .92 Reproducibility Responsiveness Burden
CARES (Cancer Rehabilitation Evaluation System)
Find how cancer affects psychosocial, physical & behaviors Patient completes Shortens the CARES for use with clinical trials Patient completes Measures the importance of needs and the degree to which their needs are met Patient completes Assesses unmet needs of people with cancer Patient completes
93-132 items; 6 domains: physical, psychological, medical interaction, marital, sexual, miscellaneous
Five-point scale plus “do you want help: yes/no?”
Subscales: r = .84 - .95 87% agreement n=71, time=1 week
CARES-SF (Cancer Rehabilitation Evaluation System-Short Form) CPNS (Cancer Patient Need Survey) Patient General
38-57 items; 5 domains: physical, psychological, medical interaction, marital, sexual 51 items; 5 domains: coping, help, information, work, and cancer shock
Five-point scale plus “do you want help (yes/no)?”
Selected from the CARES by experts
Domains ranged from .60 to .84
Dimensions: r=.69 - .92 81%-86% agreement n=120, time=10 days
“Importance”: seven-point Likert scale; “how well met”: sevenpoint Likert scale
Interviews with nurses, patients, & caregivers using Objective Content Test & Q-sort method Literature. Interviews. Expert review. Pilot test.
Overall: 0.91 Importance: .83.93 How well met: .79-.95 Domain: = .88 to .92 Discriminant Domains validity: able to ranged from .78 distinguish to .90 patients with different disease stages.
CPNQ (Cancer Patient Need Questionnaire)
71 items; 5 domains: psychological needs, health info, ADLs, patient care/support, interpersonal communication
Five-point scale: “what is your level of need for help?”
Intercorrelation all significant kappa > .4 n=124, time=10-14 days
SCNS (Supportive Care Needs Survey)
Assesses impact of cancer on lives of cancer patients Patient completes
61 items; 5 domains: psychological needs, health information, physical/daily living needs, patient care & support, and sexuality
Five-point scale: “what is your level of need for help?”
Factor analysis.
Based on CPNQ. Expert review. Pilot test.
Domain ranged from .87 to .97
Time: 10-45 min; Reading level N/A; Acceptability : most found it easy to use. Find physical, Time N/A; psychosocial Reading change with level N/A; time Correlated Acceptable with FLIC @ 1, N/A. 7, 14 mo postdiagnosis Time: 2-45 min; Reading level N/A; Acceptabili ty: reported no problems when used. Time: 20 min;; Reading level: 4th or 5th grade; Acceptabili ty: 25% noncompletion rate. Time: 20 min; Reading level: 5th grade; Acceptability : patients found it understandab le, 35% noncompletion.
Instrument
Purpose & Administration
Items and Domains
Question Format
Conceptual and Measurement Model
Validity Content Validity Based on scales by Zyranski and Ware; Pilot test Construct Validity Poor discriminant validity.
Reliability Internal Consistency Domains ranged from 0.10-0.75 Reproducibility
Responsiveness
Burden
HCS-PF (Home Care Study-Patient Form)
NEQ (Need Evaluation Questionnaire)
Patient General
33 items; 2 domains Satisfaction with: care availability, care continuity, MD availability, MD competence, MD personality, MD Interview; communication, patient may general satisfaction be able to Preference: home complete care, decisionmaking Assess needs of 23 items; hospitalized 3 domains: helps cancer patients diagnosis/prognosis, in clinical exam/treatment, setting communication & relations Patient completes
Assesses attitudes of terminally & chronically ill patients toward medical care
Agreement with fivepoint Likert scale
Time: N/A; Reading level: N/A; Acceptability : N/A.
Agreement with yes/no statement
Factor analysis.
Interviews. Pilot tests.
Domains: ranged from .69.81
Cohen’s kappa ranged from .54.94 Time=1week
PNAT (Patient Needs Assessment Tool)
Screen cancer patients for physical & psychological functioning problems Part of clinician interview Measure the unmet psychosocial needs of cancer patients and their caregivers. Patient & caregiver complete
16 items; 3 domains: physical, psychological, and social
Five-item impairment scale for each area within domain
Literature. Clinical experience.
Physical domain Domains: correlates with ranged from .85KPS; .94 Psychological with GAIS, BSI MPAS, BDI Social with ISEL. > .7 for each of the first six domains.
Interrater reliability: Friedman: .87, .76, .73; Spearman rank order: .59- .98
Time: 5 min; Reading level N/A; Acceptability : 63% of patients OK; 24% incomplete; 3% missing data. Time: 20-30 min.; Training level: low; Acceptablity: N/A.
PNI (Psychosocial Needs Inventory)
48 items; 7 domains: related to health professionals, information needs, related to support networks, identify needs, emotional and spiritual, practical and childcare need.
Five-point “Importance” scale Five-point “Satisfaction” scale
Literature. Interviews. Focus group.
Discriminant validity: detected the differences among needs at four critical movements of cancer trajectory.
Time: N/A; Read level: N/A; Acceptabili ty: 59% nonresponse rate and the characterist ic of the nonrespondents was examined.
Table 1 (continued)
Instrument Purpose & Administration Items and Domains Question Format Conceptual and Measurement Model Validity Content Validity Literature. Interviews using Critical Incident Technique & Nominal Group. Expert review. Factor analysis. Similar structure was found across Hodgkins; breast cancer patients and over time. Literature. Interviews. Construct Validity Correlated with overall satisfactionwith-care. Reliability Internal Consistency Agreement on classification by three researchers working independently Reproducibility Responsiveness Burden
PCNA (Prostate Cancer Needs Assessment)
Measures the importance and unmet needs of men with prostate cancer Patient completes
135 items; 3 domains: information, support, and care delivery
Ten-point “Importance” scale Ten-point “Extent Need Met” scale
R = .97 time=2 weeks
PINQ (Patient Information Need Questionnaire)
Patient General
Measures the information need among cancer patients for the improvement of clinical practice and research Patient completes
17 items; 2 domains: disease-oriented and information about access to help & solution
Four-point scale
Correlated with RSC, StateAnxiety Inventory & MMPI D-scale.
Domains: ranged from .88.92; Inter-item correlation >0.2
Detected the changing needs of patients at three time points before and after first treatment
DINA (The Derdiarian Informational Needs Assessment)
Measures the informational needs of cancer patients Interview
144 items; 4 domains: disease, personal, family, and social relationship.
Check the need present and rate importance on 10-point scale
Theory of information seeking. Needs and hierarchy of needs. Based on the theoretical framework of Derdiarian
Expert review.
Domain: exceeded 0.9 for all domains
80% - 100% agreement found using McNemar test time=15-20 min.
Detected difference between control group and experimental group
Time: 43 min; Reading level: 7th grade; Acceptabili ty: 11% noncompletion. Time: N/A; Reading level: N/A; Acceptabili ty: reasons to refuse: not wanting to be reminded of their illness, feeling too old, etc. Time: N/A; reading level N/A; Acceptability : N/A.
INM (Information Needs Measure)
Assess the priority of informational needs of cancer patients Patient compeletes
9 information categories.
Control preference scale; ranking of informational resources; prioritization of information needs
Literature. Based on works by Derdiarian Expert review.
Kendall zeta: .95-.99. Kendall coefficient of agreement: .20.35.
Time: N/A; Reading level: N/A; Acceptabili ty: N/A.
Instrument
Purpose & Administration
Items and Domains
Question Format
Conceptual and Measurement Model
Validity Content Validity Literature. Nurse opinions. Construct Validity Correlated with the information scale of HOS.
Reliability Internal Consistency Overall =.97; Domains ranged from .73 to .93; Correlation of subscales to total scale: .38 - .88 Reproducibility
Responsiveness
Burden
Patient General
TINQ-BC (Toronto Informational Needs QuestionnaireBreast Cancer)
Identify information needed by women with recent breast cancer diagnosis to deal with illness Patient completes Assess effectiveness of hospital’s palliative care program Professional completes Assess quality of palliative care of multi-disciplinary cancer support teams Professional completes
51 items; 5 domains: diagnosis, tests, treatments, physical, psychosocial
Five-point “Importance” scale
Time: 20 min;; Reading level: N/A; Acceptability : OK
PACA (Palliative Care Assessment )
12 items; 3 domains: symptom control, insight, and future placement
Four-point scale, except five-point scale for insight
Interviews of patients.
Symptom scores correlated with McCorkle symptom distress scale
Kappa ranged from .44 –1
Sensitivity to detected statistically significant intervention effects
Time: few min.; Training level: N/A; Acceptability : N/A. Time: 2 min. for existing patients, 5 min. new patients; Training level: N/A; Acceptability : N/A.
STAS (Support Team Assessment Schedule) Stage Specific
NEST (The Needs Near the End-ofLife Care Screening Tool)
Measure experiences of end-of-life patients & possibly assess impact of interventions Interview; patient completes if possible
17 items; 8 domains: pain/symptom control, insight, psychosocial, family needs, home services, planning affairs, support of other professionals, communication 135 items; 8 domains: patient-MD relations, social connection, caregiving need, psychological distress, spirituality, personal acceptance, have purpose, clinician communication
Five-point Likert scale
Literature. Clinical experience.
Correlated with patient & family score, Karnofsky score, Spitzer QOL index. Support team scores correlate with patient & family scores. Domains: ranged from 0.63-0.85 at baseline and 0.64-0.89 at follow up
Interrater reliability: 90% agreement except predictability
Detected improvement in palliative care Evaluated 2 palliative care support teams
Five-point Likert scale
Frame for a good death. Factor analysis. Measurement invariance across sociodemogra phic strata. Item response theory on the short version
Literature. Interviews & focus groups. Symptom items from other scales. Pilot tests. Expert review.
Time: N/A; Reading level N/A; Acceptabili ty: 69.2% patients found interview helpful.
Table 1 (continued)
Instrument Purpose & Administration Items and Domains Question Format Conceptual and Measurement Model Validity Content Validity Interviews. Family ranking of items. Q-sort. Construct Validity Correlated with McCusker & with overall satisfaction with care questions. Reliability Internal Consistency Overall : 0.93; Domains: ranged from .61.88 Reproducibility Responsiveness Burden
FAMCARE
FIN (Family Inventory of Needs)
20 items; 4 domains: information giving, care availability, Family physical care, completes pain control, and 2 other items Measure needs of 20 items, 1 cancer patient’s domain family & extent needs are met Family completes Measure information needs of husbands of women with breast cancer
Measure family satisfaction with advanced cancer care
Five-point Likert “Satisfaction scale”
R = .92 n=23, time < 23 hrs
Time: 22 min; Reading level: N/A; Acceptabili ty: N/A.
Ten-point “importance” scale and met/unmet check
Fulfillment theory; factor analysis.
Literature. Correlated with Items from FAMCARE. original Critical Care Family Needs Inventory. Family review. Based on FIN Pilot test.
Overall for “importance” scale: 0.83
Time: “short”; Reading level: N/A; Acceptability : N/A. Importance subscale: r=0.82, Need Met subscale: r=.79 time: < 24 hrs Time: 16-30 min; Reading level: N/A; Acceptability : 12 husbands refused to complete.
FIN-H (Family Inventory of NeedsHusbands)
HCNS (Home Caregiver Need Survey)
30 items; 5 domains: surgical care needs, communication with MD, family relations, Husband diagnosis/treatme completes nt specifics, husband’s involvement Measures the 90 items; importance and 6 domains: satisfaction of the information, needs of household, caregivers. patient care, personal, Caregiver spiritual, and completes psychological
Five-point “Importance” subscale and three-point “Need Met” subscale
Caregiver
Factor analysis.
Overall ranged from .90.93; 73%-87% of items: item-total correlation 0.40.7
Seven-point “Importance” subscale and seven-point “Satisfaction” subscale
LackeyWingate model
Statements from patients & home caregivers. Expert evaluation. Pilot test.
Psychological, patient care, personal and household Domains correlated with KPSS
Overall : 0.93, 0.98; Domains: ranged from .85-.97
Detected changing caregiver needs at 3 time points
Time: 30 min; Reading: 5th grade level; Acceptabili ty: caregivers OK.
Instrument
Purpose & Administration
Items and Domains
Question Format
Conceptual and Measurement Model
Validity Content Validity Based on scales by Zyranski and Ware. Pilot test. Construct Validity Good discriminant validity
Reliability Internal Consistency Domains: ranged from .50.85 Reproducibility
Responsiveness
Burden
HCS-CF (Home Care Study – Caretaker Form)
Assess attitude of terminally & chronically ill caretakers toward medical care of their patients Interview; patient may be able to complete
NSS (Need Satisfaction Scale)
Assess the intensity and satisfaction of the needs of bereaved families Family completes Assess information & support needs of women who have primary relative with breast cancer Self-complete
42 items; 2 domains: Satisfaction with care: availability, continuity, MD availability, MD competence, MD personality, MD communication, general satisfaction Preference for: home care, decision making 9 items
Agreement with fivepoint Likert scale
Time: N/A; Reading level: N/A; Acceptability : N/A.
Caregiver
Five-point ”Felt need” subscale and five-point “Met need” subscale
Literature. Expert review.
Unmet needs correlated with overall satisfaction with care
Overall : 0.84; “Felt need” subscale: 0.74; “Met need” subscale: 0.84.
Time: 15 min; Reading level: N/A; Acceptabili ty: N/A.
Relative
ISNQ (Information and Support Needs Questionnaire)
29 items; 2 domains: information and support
Four-point “Importance” subscale and Four-point “Need Met” subscale
Literature. Interviews.
Domains: ranged from .92.95
Time: 37 min; Reading level: “middle” class; Acceptabili ty: “several” reported it didn’t apply.
Table 2 : Domain Item Distribution Across Instrument
Instruments CARES CARES- CPNS SF # Items 93 38 51 Domain 132 57 Pain Symptom Ctrl Physical 26 10 Cancer Shock 11 Psychological 44 17 Psychosocial Spiritual Insight Sexuality 8 3 Personal Marital 18 6 Caregiving needs Family Social Communication Planning Other Prof Information 10 Diagnostic Info Treatment Info Investigative Info Daily Living Work 5 Household Activity Mgt Coping 16 Future Placemt Sense of purpose Participation MD. Interaction 11 4 MD/Care Availability MD Competence Patient Care Continuity of C Home Care Access to Care Care delivery Support Financial Help 9 Other 32 19 CPQ SCN S HCS -PF NEQ PNAT PNI PCNA PINQ DINA INM TINQBC PACA STAS NEST FAM CARE FIN FIN -H HCNS HCS -CF NSS ISNQ
71
61
33
23
16
48
135
17
144
9
51
10 1 7
17 1 1 2 1 1
20 3
20
30
89
42 5
20
29
9 16 22
6 5
11 5 30 6
1 3 1 1
11 6 6
20
5 2
2
3
2 3 1 2 6 4
14 18
10
15 7
64 9 1 2 9 16 7
12
1 3 2 8 4 8 8 4 4 4 35 36 1 8 4 2 1 3 6
5
7 2 8 4 16 4 4
9 1 2 20 11
unclear numbers of items