Instrument

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