Appendix H

Karl Lorenz; Joanne Lynn; Sally C Morton; Sydney Dy; Richard Mularski; Lisa Shugarman; Virginia Sun; Anne M Wilkinson; Margaret Maglione; Paul G Shekelle

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Lorenz K, Lynn J, Morton SC, et al. End-of-Life Care and Outcomes. Rockville (MD): Agency for Healthcare Research and Quality (US); 2004 Dec. (Evidence Reports/Technology Assessments, No. 110.)

This publication is provided for historical reference only and the information may be out of date.

This publication is provided for historical reference only and the information may be out of date.

End-of-Life Care and Outcomes.

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Appendix H

Appendix H1. Methodological Issues in Measurement

Our literature review also identified a number of articles that dealt with specific methodological issues that are prominent in end-of-life care research. Our search strategy captured challenges to measurement in end-of-life care during the undertaking of identifying validated measures. Two recently published expert opinion compilations provide additional data: a series of 6 articles in the Journal of Palliative Medicine ^1–6 and 3 articles in a special issue of the Gerontologist.^7–9 Also, an on-line symptom research text provides an review of methodological challenges and research approaches in this field.(Interactive Textbook on Clinical Symptom Research. Eds. Max MB and Lynn J. http://symptomresearch.nih.gov/tablecontents.htm)

Ten articles looked at the concordance between raters or proxy determinations. One study found that inter-rater kappa values were poor for pain, anxiety, and depression. A number of articles reported that current patient-proxy ratings had higher agreement with each other than with relatives' retrospective ratings, and that knowledge ratings were better matched overall agreement of family proxy evaluations to patient evaluation is moderate.^10, ^11, ¹² An examination of patient-caregiver congruence in QOL assessment in newly-diagnosed lung cancer patients reported large differences. Low congruence was related to low patient-related self-efficacy, high patient psychological distress, and caregiver strain.¹³ Another study reported that family members were better proxies than staff for symptoms.¹⁴ A study of patient-proxy perception of the quality of care found that agreement was best when both lived together and shared everyday experiences.¹⁵ A comparison of patient and surrogate satisfaction ratings found low correlation.¹⁶ A study between patients, physicians, and proxy demonstrated that significant others and physicians had poor agreement on symptoms experience in the last week of life with kappa values across multiple symptoms <= 0.4.¹⁷ Sulmasy, et. al. explored the accuracy of substituted judgments by proxy compared to patients with terminal diseases with hypthetical scenarios and explored associations that affected the congruence.¹⁸ On average, agreement was 66% and was increased if patient and surrogate had spoken about end-of-life issues (OR 1.9), if patient had private insurance (OR 1.5), and if the patient was more educated (OR 1.7). Clipp and George explored the reliability of spouse informants finding that caregivers agreed with patients on objective but not subjective measures of functioning and viewed patients' functioning more negatively than patients in domains such as depression and fear of the future.¹⁹

Agreement between professional health care providers and patients revealed similar shortcomings. A comparison of patient and nurse assessments reported good agreement for symptom control but differences for anxiety, personal thoughts, practical matters, and information received.²⁰ Another comparison of patients and nurses found low correlations between patients and providers and symptoms; nurses tended to rate patients' symptoms more highly than patients rated their own symptoms.²¹ An article evaluating the number of symptom ratings needed for reliability found that 3 raters on 1 occasion or 2 raters on 2 occasions were needed.²² An evaluation of patient-physician concordance reported that patients and clinicians disagreed in 26% of cases about whether end-of-life communication had occurred.²³ Agreement for symptoms assessed by the Rotterdam Symptom Checklist in over 33,000 cases between physician and patients showed 78% agreement with the highest discordance in severity assessment where providers demonstrated a consistent bias toward underestimation.²⁴ Fatigue showed marked omissions by nurse recognition.²⁵ Another study documented that proxy and physician reports agree with patient self-reports for prevalence of chronic diseases but that proxy respondents missed certain diagnoses in after-death interviews.¹⁷ Three articles compared the usefulness of different tools. A comparison of FACT-G, Spitzer QLI, ECOG-PS, VAS, and a 5 point word anchor categorical scale concluded that a single-item global measure of quality of life was as effective as the multidimensional ones (although QOL didn't change much during the study).²⁶ One study evaluated the content validity of EORTC QLQ-C30, ESAS, POS, MQOL, and MSAS by comparing the content of each to the symptoms and problems noted in records of admitted palliative cancer patients. They found that the EORTC QLQ-C30 covered 10 and the MSAS 11 of the 12 most frequent problems.²⁷ One article described a surgical palliative workgroup that identified validated measures which were potentially applicable to the palliative population.²⁸

One article evaluated the use of instruments designed for healthier populations for use at the end of life. An evaluation of a needs assessment found that some items did not apply for hospice patients (such as work issues).²⁹

Cassarett, et. al. compared 2-week post-death survey to 6-week post-death survey timing and found no differences in response rates or self-report of distress.³⁰

Two articles compared thresholds with different instruments. A study evaluating the impact of measuring somatic symptoms when diagnosing depression in the terminally ill reported that this inflated the rate of diagnosis only with a low-threshold approach to diagnosing depression.³¹ Another study comparing pain intensity markers, the pain relief scale, a pain satisfaction scale, and 3 pain management indices reported that the proportion of inadequately treated patients ranged from 16–91% depending on the measure.³²

Five studies evaluated feasibility issues in assessing patients near the end of life. One study using a number of scales reported that 66% of eligible palliative care patients were able to participate with significant help, although much data was incomplete.³³ One group devised a 3-word choice to use instead of a numerical scale.¹⁴ One study reported that missing data was an indicator of more severe illness.³⁴ One study described methods for increasing sample size for proxy reports in after death studies with extensive case-finding strategies.³⁵ Hopwood, et. al. report limitations in QOL questionnaires in lung and head and neck cancer trials including logistical problems with patients being too ill to complete evaluations, organizational problems administering questionnaires, and differential quality in administration of measures between type of staff member.³⁶

A number of articles looked at potential sources of bias introduced by methodology in end-of-life and palliative care research. One study reported an assessment bias that pain was much more likely to be documented on the MDS in nursing home residents enrolled in hospice.³⁷ Another study examined selection bias with cluster randomization as is often done when comparing different programs or centers of care and reported differences in demographic characteristics and diseases representations that were attributable to the specialty mix of the groups.³⁸

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Appendix H2. VERSION

Table H-2Reliability and Validity Data for Measures Identified

Measure name	Population Setting	Validity Testing
Domain(s)	Brief description	Reliability Data
Agitation Distress Scale¹	Mixed cancer	Principal components analysis reveal only 1 component; significantly correlated with agitation items on MDAS & DRS (0.61) but scale was not correlated with cognitive items
Domain(s): Emotional symptoms	6-item; clinician-rating scale	Cronbach's 0.91; inter-rater kappa 0.72–1.0

Anticipatory Grief Scale² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Grief and bereavement	27 items; interviewer or self-administered	See Toolkit for details

“Are you depressed?³”	Mixed diseases	Correctly identified diagnosis of depression in all patients
Domain(s): Emotional symptoms	Single-item screening for depression	Kappa=0.76 between interviewers and observers

Barthel Index ² ^Toolkit	Mixed diseases	see Toolkit for details
Domain(s): Functional status	10 item; self-administered and a 15 item version that is medical professional administered	see Toolkit for details

Bereavement Phenomenology Questionnaire (BPQ)⁴	Mixed diseases	Discriminate MANOVA showed decreasing scores over time; factor analysis reveals only one factor despite being designed to assess four dimensions
Domain(s): Grief and bereavement	22-items, 4 point Likert scale	Cronbach's alpha 0.93

Bereavement Risk Index (BRI)⁵	Mixed diseases	Significant differences were found between low and high-risk groups in the Brief Symptom Inventory; results persisted 25 months after death.
Domain(s): Grief and bereavement	Uses an adapted 8-item version	NR

Brief Hospice Inventory⁶	Mixed diseases	Factor analysis reveals 2 factors
Domain(s): Quality of life; Physical symptoms; Emotional symptoms	NR	Cronbach's alpha 0.84–0.94

Brief scale⁷	Lung cancer patients of mixed severity	Reported against HADS (outlook correlation 0.61, support 0.43) and RSCL (outlook 0.64, support 0.18); correlation to corresponding Spitzer QL-Index (outlook 0.55, support 0.53)
Domain(s): Quality of life	(uses 2 of 5 items from Spitzer Quality of Life index); consists of 2 separate implicit scores on 3 tier scale for mood/outlook (based on 3 structured questions) and social support (based on 2 questions); clinician assessment	NR

Cambridge Palliative Assessment Schedule (CAMPAS-R)⁸	Mixed diseases	Correlated with EORTC & HADS items and scales for some symptoms but not others; significant differences between patients who did and who didn't survive
Domain(s): Physical symptoms	Patient physical and psychological symptoms; patients-rated caregiver psychological symptoms; VAS	Cronbach's alpha 0.77–0.8

Cancer Patient Need Survey⁹	Mixed cancer	Discriminate validity with different scores for hospice and clinic patients - may need different instrument for hospice patients
Domain(s): Needs assessment (Quality of care)	51 items, 5 categories - coping needs, help needs, information needs, work needs, cancer shock needs	Cronbach's alpha 0.91

Caregiver Reaction Assessment² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Caregiver well-being	24 items; interviewer administered	See Toolkit for details

Caregiver Strain Index² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Caregiver well-being	13 items; interviewer administered	See Toolkit for details

Center for Epidemilogic Studies (CES-D)² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Emotional symptoms	20 items; interviewer or self-administered	See Toolkit for details

Chao Patient Perception² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Continuity of care	23 items; self-administered mailed survey and medical record review	See Toolkit for details

Comfort Assessment in Dying with Dementia (CAD-EOLD)¹⁰	Single disease -advanced dementia	Item-total correlations range 0.39 to 0.79; correlation for symptom items on SM-EOLD r = 0.475 to 0.559
Domain(s): Physical symptoms, Emotional symptoms	14 items; 4 subscales (physical distress, dying symptoms, emotional distress, well being)	Cronbach's alpha 0.85 overall; subscales (physical distress r=0.74, dying symptoms r=0.70, emotional distress r=0.82, well being r=0.80)

Communication Capacity Scale¹	Mixed cancer	Principal components analysis show only 1 component; highly associated with cognitive items on MDAS and Delirium Rating Scale (0.83); not correlated with agitation items
Domain(s): Emotional symptoms	5 item; clinician-rating scale	Cronbach's 0.96; inter-rater kappa 0.78–0.95

Concept of a Good Death measure¹¹	Mixed diseases; not used with patients	Factor analysis - 3 subscales; small-to moderate association with other measures suggesting that these are distinct but related constructs; some items with low variability
Domain(s): Multidimensional measure (Palliative Outcomes)	17 descriptive statements of components that might be related to concept of good death; 3 subscales: closure, personal control, clinical criteria	Test-retest: ICC 0.66–0.83.

Core Bereavement Items (CBI)¹²	Mixed diseases	Factor analysis to develop subscales; face validity examines -kept subscales that described key components of bereavement; discriminant validity to time and group effects
Domain(s): Grief and bereavement	17 items, 3 subscales, measuring bereavement phenomena (developed from Bereavement Phenomenology Questionnaire)	Cronbach's alpha 0.91

Cornell Scale for Depression in Dementia (CSDD)¹³	Single disease - dementia; elderly nursing home residents	Oblique rotation 4-factor matrix with eigenvalues >1.0 account 50% variance; inter-factor correlation 0.30 for depression and disturbed sleep, others <0.181; criterion-validity done; no testing with external scales
Domain(s): Emotional symptoms	19 items (16 items retained in 4 domains), 3 level scale; 2 steps - clinician interview of caregiver, brief patient interview and clinical observation	Internal consistency 0.76 total 16 item, depression subscale 0.75, somatic 0.72; Cronbach's 0.76

Cost and Reciprocity Index (CRI)¹⁴	NR	Testing was done of the original instrument in healthy populations - relations between subscales are consistent with theoretical framework.
Domain(s): Caregiver well-being	25 items(modified), 4 subscales, face-to face for hospice caregivers; concepts of social support, reciprocity, cost, and conflict	Cronbach's alpha 0.68–0.83

Death Attitude Profile² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Spirituality	21 items; self-administered	See Toolkit for details

Death Transcendence Scale² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Spirituality	25 items; self-administered	See Toolkit for details

Decisional Conflict Scale (DCS)¹⁵	Mixed diseases; applied scale to cancer patients	Construct validity among subscales 0.58 – 0.76; criterion validity significant between certain vs. uncertain groups; 3 factor model rejected (4 factor suggested in exploratory work)
Domain(s): Advance care planning (Treatment decisions)	16 items, 5 point Likert scales; 3 subscales (uncertainty, factors contributing, and effective decision making)	Prior testing - internal consistency 0.78–0.89; test-retest >0.80; in combined subscales in this study - uncertainty 0.75, factor contributing 0.82, and decision making 0.82

Duke-UNC Social Support Scale¹⁶	Single disease - lung cancer	NR
Domain(s): Quality of life	NR	Cronbach's overall 0.94, subscales 0.88 to 0.92

Dyspnea Descriptor Questionnaire¹⁷	Single disease -heart failure; study done as convenience sample at single emergency department	Factor analysis done - 4 factor 71%
Domain(s): Physical symptoms (dyspnea)	13 descriptors asked retrospectively (derived from literature search)	Cronbach's 0.95; inter-item correlation 0.60

Edmonton Functional Assessment Tool (EFAT-2)^18, ^19, ²⁰	Mixed diseases	Concurrent validity shows it to be highly correlated with KPS and ECOG; total score highly correlated with global scale. Construct validity distinguished between inpatients and home palliative care patients. EFAT -2 (revision of EFAT)¹⁹ not correlated with pain; significantly different in different groups based on discharge location; factor analysis: 2 components - physical & cognitive/affective
Domain(s): Functional status	10 items (revised version); professional grading and evaluation scale describing symptoms and functions, one summary functional assessment; 0–4 scale	Inter-rater, ICC 0.71; Cronbach's alpha 0.86; Interrater ICC 0.97 for self trained clinicians (n = 2) and 0.95 for formal trained (n = 2); kappa on items ranged from 0.25 to 0.96 for self trained clinician pair and 0.17 to 0.95 for formal trained

Edmonton Symptom Assessment Scale (ESAS)² ^Toolkit ²¹	Mixed diseases	See Toolkit for additional details
Domain(s): Physical Symptoms	9 items on 100mm visual analogue scale; self-administered or proxy	Correlation to MSAS Global Distress r = 0.73; concurrent validity ESAS summary distress score to MSAS demonstrated; TMSAS scale (0.72), GDI (0.73), physical symptom subscale (0.74), and psychologic symptom subscale (0.56); ESAS summary distress score to FACT demonstrated: physical well being subscale (-0.75), sum QOL (-0.69), functional well being (-0.63), emotional well being (-0.52) and social/family well being (-0.25); all item correlations reported as significant; calibration studies showed overlap for median values within scales for all items
		Cronbach alpha 0.79; test-retest Spearman correlation 0.86 at 2 days and 0.45 at 1 week; all items significantly correlated at 2 days (r = 0.43 to 0.86) but at 1 week only pain (0.75), activity (0.65), depression (0.54), shortness of breath (0.53) and distress (0.45) were significantly correlated;

European Organization for Research and Treatment Core Quality of Life Questionnaire, version 3.0 (EORTC QLQ-C30)²² ^Toolkit ² ¹⁶	Mixed diseases	See Toolkit for additional details; Inter-scale correlations were moderate in general, statistically significant - weak correlations where they should have been weak; discriminative by functional status (p=0.01); responsiveness to changes in health status over time - significant difference (p<0.001) for pre & post treatment; construct - exploratory factor analysis - 6 factors.
Domain(s): Quality of life	30 items; self-administered	Cronbach's overall 0.93, subscales 0.69 to 0.89 (7 or 12 subscales > 0.80); in palliative population Cronbach's 0.56–0.79

FACT/FACIT (Fact-G)²³ ² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Quality of life	27 items; self-administered	See Toolkit for details

FAMCARE² ^Toolkit ²⁴ ²⁵	Mixed diseases	See Toolkit for details
Domain(s): Satisfaction	20 items; interviewer administered	Inter-item correlations met criterion (minimum 50% with r = 0.3 to 0.7) for 18 of 20 items; item correlation to total score 0.4 to 0.75 for 12 of 12 items; Cronbach's alpha 0.93

Family Assessment Device (FAD)²⁴	Mixed disease	NR
Domain(s): Satisfaction, Caregiver well-being	12 items; assess family functioning	Inter-item correlations met criterion (minimum 50% with r = 0.3 to 0.7) for 18 of 20 items; item correlation to total score 0.4 to 0.75 for 12 of 12 items; Cronbach's alpha 0.88

Family Caregiver Medication Administration Hassles Scale²⁶	Community study (details of patients not given) - looks at problems caregivers experience with assisting elderly with medications	Principal components and factor analysis done (66.5% cumulative variance; construct validity to Medication Complexity Index (r=0.19) & modified Caregiver Strain Index (r=0.44)
Domain(s): Caregiver well-being	24 items paper survey; 4 subscales (Information, Safety Issues, Scheduling, & Polypharmacy); scale 0–5 for each item	Test-Retest at 2 weeks (n=53) 0.84 (0.78–0.85 Pearson correlation across subscales); internal consistency 0.95; Cronbach's alpha (0.80–0.92 across subscales)

F-Care Expectations Scale²⁴	Mixed diseases	NR
Domain(s): Satisfaction	16 items; assess family care expectations	Inter-item correlations met criterion (minimum 50% with r = 0.3 to 0.7) for 13 of 16 items; item correlation to total score 0.4 to 0.72 for 12 of 16 items; Cronbach's alpha 0.88

F-Care Perceptions Scale²⁴	Mixed diseases	NR
Domain(s): Satisfaction	21 items; sssess family members care perceptions	Inter-item correlations met criterion (minimum 50% with r = 0.3 to 0.7) for 18 of 21 items; item correlation to total score 0.4 to 0.72 for 13 of 21 items; Cronbach's alpha 0.86

FIM™ Instrument² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Functional status	18 items; interviewer administered	See Toolkit for details

Frail Elderly Functional Assessment Questionnaire (FEFA)²⁷	Mixed diseases; age > 65 years; homebound and nursing home	Correlation to direct observation (r=0.90); also Katz's ADL index (r=0.86), Barthel index (r=0.91), Lawton's IADL index (r=0.67)
Domain(s): Functional status	19 items; assess function in elderly at very low activity level; interviewer administered	Test-retest in n = 29 at 2 week interval - kappa 0.82 overall, all items > 0.40 (0.45–0.91)

Grief Experience Inventory (GEI)²⁸	NR	Discriminate validity bereaved versus non-bereaved reported significant at 0.001 level on all subscales
Domain(s): Grief and bereavement	102 statement self-administered inventory scaled yes/no; nine composite scales including 3 validity and 6 domains	Test-retest coefficients 0.53–0.87; Cronbach's alpha 0.52–0.84 on bereavements scales

Grief Resolution Index² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Grief and bereavement	7 items; interviewer or self-administered	See Toolkit for details

Hebrew Rehabilitation Center for Aged index (HRCA-QL)²⁹	Adapted for patients with advanced cancer	Scores declined as patients became closer to death; sensitive to change in status; criterion validity correlated with KPS and IADL index
Domain(s): Quality of life	Version of the Spitzer Quality of Life index	Cronbach's alpha 0.7–0.78; test-retest: 0.89; inter-rater 0.67

Herth Hope Index² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Spirituality	12 items; interviewer administered;	See Toolkit for details

Hogan Grief Reaction Checklist (HGRC)³⁰	Mixed diseases	Convergent validity to TRIG, GEI and IES ranged from r = 0.20 to 0.78 with significant correlations across subscales; discriminant validity in subset of mothers who experienced death of a child by different mechanisms (illness, accident, suicide, or homicide) revealed differences in blame and anger; discriminate validity with subset of mothers with deaths <or>3 years in past revealed difference in intensity of grief and personal growth; factor analysis reported
Domain(s): Grief and bereavement	61 items; six constructs, (despair, panic behavior, blame and anger, disorganization, detachment, and personal growth)	Cronbach's alpha overall 0.90 (despair 0.89, panic behavior 0.90, blame and anger 0.79, disorganization 0.84, detachment 0.87, and personal growth 0.82); test-retest over 4 week interval significant at p<0.001 (despair r = 0.79, blame and anger r = 0.56, disorganization r = 0.85, detachment r = 0.77 and personal growth r = 0.81)

Hospice Pressure Ulcer Risk Assessment Scale (HoRT)³¹	Mixed diseases	discriminant validity with statistically significant differences between patients with and without ulcers. PPV 50%, NPV 100%.
Domain(s): Clinical assessment tool	assess physical activity, age, mobility	NR

Hospital Anxiety and Depression Scale (HADS)³²	Breast cancer	Using cutoff value of tool, sensitivity/specificity (depression) 75%, 75%, misclassification rate 25%; (anxiety) 75%, 90%, 12%
Domain(s): Emotional symptoms	self-report, 7-items depression, 7-items anxiety; tries to discriminate between anxiety and depression	NR

Index of Independence in ADLs²	Mixed diseases	See Toolkit for details
Domain(s): Functional status	6 items; medical professional rating	See Toolkit for details

Index of support; done as part of Canadian Study of Health and Aging (CSHA)³³	Community study of elderly	4 phases: factor analysis (item correlations 0.26 to 0.83), item response theory analysis, external (construct and predictive validity on 2nd half of study population), and IRT(r=0.53 to network size)/classical (r=0.61) comparison
Domain(s): Instrumental support available to older Canadian community residents	6 items; 4 level scales; interview	Cronbach's alpha 0.76; IRT marginal reliability 0.85

Kansas City Cardiomyopathy Questionnaire³⁴	Single disease - CHF	Convergent validity 0.46 – 0.74 across 7 domains; physical limitation to 6-minute walk (r=0.48), SF-36 (r=0.84), LiHFe (0.65); responsiveness higher than LiHFe and SF-36 for admission with CHF exacerbation
Domain(s): Quality of life; Physical symptoms; Functional status	Self-administered, 23-items, HRQOL in CHF	Cronbach's alpha 0.62–0.95 across 7 domains; test-retest at 3 months without exacerbation 0.8 to 4 point changes in 1–100 point scale

Life Closure Scale (LCS)³⁵	Mixed cancer diagnoses	Content validity with interviews and experts evaluation
Domain(s): Spirituality	45 items; assess psychological adaptation in dying	Cronbach's alpha 0.80

Life Evaluation Questionnaire (LEQ)³⁶	Mixed diseases	Convergent validity to RSCL ranged from 0.01 to 0.62 (sufficient only for freedom, resentment, and social integration); convergent to MacAdam and Smith Support scale factor ranged from 0.02 to 0.62 and similarly sufficient only for freedom, resentment, and social integration; analysis with five components reported.
Domain(s): Quality of life	121 items, 0–60 scale; self-administered; five subscales (freedom, appreciation of life, contentment, resentment, social integration)	Cronbach's alpha (freedom 0.70, appreciation of life 0.76, contentment 0.76, resentment 0.85, social integration 0.78); test-retest n=40, at 2–3 days (freedom r=0.80, appreciation of life r=0.91, contentment r=0.77, resentment r=0.92, social integration r=0.84)

Linear Analogue Scale (LAS) for quality of life in cancer patients³⁷	Mixed cancer	Correlation between LAS and performance status (r=0.46); questionnaire and performance status (r=0.38) - overall poor performance noted
Domain(s): Quality of life	5 questions, linear analogue scale, self-assessment	Cronbach's alpha 0.75; subgroup LAS (alpha 0.58) compared to questionnaire (0.93); n=41 test-retest LAS (29.3% of cases judged reliable), questionnaire (82.9%)

Lung Cancer Symptom Scale (LCCS)^38, ^39, ⁴⁰	Single disease - lung cancer	Construct validity with KPS 0.15–0.63 across items (symptomatic distress 0.49, effect on activities 0.63, QOL 0.43); criterion validity (patient scale / observer scale respectively) - KPS (r=0.63, NA), SIP(0.40, 0.56), POMS(0.67,0.54), ATS 29 cough (0.56, 0.65) and dyspnea (0.46, 0.64), SF-MPQ (items range 0.51 – 0.67); content validity (high agreement noted without specific data); construct validity between scales: cough (r=0.74), dyspnea (r=0.66), hemoptysis (r=0.71), pain (r=0.71), wt loss (r=0.61); criterion validity to Karnofsky r=0.59
Domain(s): Quality of life; Physical symptoms; Emotional symptoms; Functional status	2 scales; patient - 9 items visual scale (100mm) and observer - 6 items (4 point or none scale)	Cronbach's alpha 0.82 (patient scale) and 0.75 (observer); internal consistency to BSI (r=0.93), SIP (r=0.94), POMS (r=0.94), SF-MPQ (r=0.91, r=0.64–0.74 for 3 components); test-retest r>0.75 for all items; interobserver r>0.75 for all items except cough (r=0.65) and weakness (r=0.54); note weakness has subsequently been dropped

McCusker Scale² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Continuity of care	4 items; interviewer administered	See Toolkit for details

McGill Pain Questionnaire² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Physical symptoms	11 items; interviewer or self-administered	See Toolkit for details

McGill QOL Questionnaire² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Quality of life	17 items, 0–10 scale; self-administered	See Toolkit for details

McMaster Quality of Life Scale⁴¹	Mixed cancer	Concurrent validity as correlated well with Spitzer QOL (r=0.7); those able to rate it themselves rated QOL higher than those who needed to have it read to them (p-0.04); days until death explained 7% of the variance in QOL
Domain(s): Quality of life	Administered to proxies or patients; responsive to perceptions of change in clinical status (p=0.01)	Interobserver r = 0.83‐0.95; intrarater 1 week 0.63 (lower than on same day); Cronbach's 0.8

Meaning in Life Scale²	Mixed diseases	See Toolkit for details
Domain(s): Spirituality	15 items; interviewer administered	See Toolkit for details

Measure of patients' assessment of the quality of communication about end-of-life care⁴²	Single disease - HIV/AIDS	Correlated with overall satisfaction with medical care (0.76); those with higher-rated communication had clinicians more likely to know if the had a DPOA
Domain(s): Advance care planning	4 items	Cronbach's alpha 0.81

Medical Outcome Study Satisfaction Survey² ^Toolkit	Mixed diseases;	See Toolkit for details
Domain(s): Satisfaction	21 items; self-administered;	See Toolkit for details

Memorial Pain Assessment Card²	Mixed diseases	See Toolkit for details
Domain(s): Quality of life	8 descriptors and 3 visual analogue scales; self-administered;	See Toolkit for details

Memorial Symptom Assessment Scale² ^Toolkit ⁴³ ⁴⁴	Mixed diseases	See Toolkit for additional details. Convergent validity to the Piper Fatigue Scale ranged from r=0.15 to 0.56 for cancer patients and 0.29 to 0.61 for noncancer patients⁴³ (best for behavioral and sensory subscales of the PFS); factor analysis yielded one psychological factor and one physical symptom with 3 subgroups; separate study ⁴⁴ showed univariate correlations to MHI well being -0.60 (-0.53 to 0.66 for 3 subscales), MHI distress 0.65 (0.48 to 0.80), FLIC -0.78 (-0.61 to -0.78, subscales of FLIC range -0.45 to -0.73), SDS 0.79 (0.57 to 0.81), and Karnofsky -0.58 (-0.31 to -0.65); the physical and global distress index subscales performed better than the psychological symptom subscale
Domain(s): Physical symptoms, Emotional symptoms	32 items; interviewer or self-administered;	Cronbach's alpha 0.85 in cancer patients (n = 66) and 0.77 in noncancer end-stage group (n = 69);

Missoula-VITAS QOL Index² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Quality of life	27 items; self-administered	See Toolkit for details

Pain Assessment in Advanced Dementia (PAINAD)⁴⁵	Single disease - advanced dementia patients in nursing home	Factor analysis done; convergent analysis to DS-DAT & DS-VAS (r=0.76, n=19) and PAIN-VAS (r=0.75, n=18) - note also done in different conditions (r>=0.82 in activity)
Domain(s): Physical symptoms	5 items with 5 subdomains of pain each with scale 3 levels (29 choices); overall additive score 0–10	Multiple observations across 44 patients; Cronbach's alpha 0.57 – 0.83 in multiple phases

Palliative Care Outcome Scale (POS)⁴⁶	Mixed diseases	Construct validity r=0.43–0.80 against ETORTC QLC-C30 AND STAS (n=29 patients, 43 staff); change over time not statistically significant; face validity by patient survey (n=12 - qualitative)
Domain(s): Quality of life; Physical symptoms; Functional status; Continuity of care; Multidimensional measure	2 parts - patient & staff; each 12 items, most 0–4 scale; general audit designed as a palliative care outcome measure, eight site study	Test-retest for seven items kappa -0.08–0.62 with % agreement 74–100%; Cronbach's alpha patient part (0.65) & staff part (0.70); Kappa > 0.3 staff compared to patient responses for 8 out of 10 items

Palliative Care Quality of Life Instrument (PQLI)⁴⁷	Mixed cancer	Face validity: expert review, patients asked to pick most important issues, rate scales; compared patients with better & worse ECOG performance status (significant); responsiveness before and after treatment; factor analysis; construct - correlated with AQEL (correlation coefficients 0.44–0.94) and EORTC - QLQ-C30 (0.79–0.97); criterion: ability to predict independent criterion variables (p<0.001); convergent & discriminative: related to corresponding & not to non-corresponding variables on interview (p<0.001)
Domain(s): Quality of life	28 items, 6 scales	Cronbach's alpha 0.79; test-retest coefficients of agreement 0.82

Physical Disability Index (PDI)⁴⁸	NR	Discriminate validity against Folstein Mini-Mental State Exam (r=0.11); convergent validity Physical Self-Maintenance Scale (r=-0.71) and Sickness Impact Profile (r=-0.59);
Domain(s): Functional status	54 items, for use with frail individuals; requires calibrated specialized performance measuring equipment	Test-retest in n = 36 at 2–5 days 0.97 overall, 4 subscales 0.92–0.96; interrater reliability 0.81–0.99 (mobility scale -0.02–0.70)

Physical Self-Maintenance Scale^2, ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Functional status	6 items; interviewer or self-administered	See Toolkit for details

Picker-Commonwealth Surve^{y2, Toolkit}	Mixed diseases	See Toolkit for details
Domain(s): Continuity of care, Satisfaction	62 items; self-administered	See Toolkit for details

Postal questionnaire to examine career satisfaction with palliative care⁴⁹	Mixed diseases	Discriminant validity tested with 36 attitudinal questions when health problems identified - only 4 were significant by Chi square; convergent testing reported in tabular form in reference
Domain(s): Satisfaction	89 question; after-death postal survey of caregivers	Cronbach's alpha 0.68 to 0.84 across 7 subsets

Profile of Mood States² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Emotional symptoms	11 items; interviewer administered	See Toolkit for details

Quality of Dying and Death (QODD)^50–53	Mixed diseases	Measure development included qualitative data from multiple focus groups and interviews. QODD 31-item family after-death measure: construct validity r=-0.52 against MSAS, r=-0.47 MSAS psychological sub-score, r=-0.42 MSAS physical sub-score; discriminative study with independent symptom questionnaire significant at p<0.01, preferences at p<0.01, and communication p<0.001; correlation to global rating of last 7 days of life r=0.55, moment of death r=0.51 (two factors explaining 38% of QODD variance)
Domain(s): Quality of life, Functional status, Survival time and aggressiveness of care, Advance care planning, Spirituality, Grief and bereavement, Caregiver well-being, Multidimensional	31 item family after-death interview across 6 domains; separate 23-item ICU version; 2 parts assess frequency and quality ratings; also 14-item nurse caregiver measure	Overall 31-items QODD Cronbach's alpha 0.89; Cronbach's alpha 0.96 for 14 item RN version; interobserver reliability 0.44 for overall QODD (23-item ICU version) after-death survey; components ranged from 0.15 to 1.0 for frequency components (mean 0.54), 0.16 to 0.59 for quality rating component (mean 0.32)

Quality of End-of-Life Care and Satisfaction with Treatment (QUEST)⁵⁴	Mixed diseases	Reviewed by experts; construct - correlate with PSI (Patient Satisfaction Index) 0.38–0.47; subscales correlated with each other (0.47–0.69); not correlated with unrelated constructs; positive skew distribution for many items; negative correlation with symptoms; patients scores were lower for patients with DNR orders
Domain(s): Satisfaction	4 scales (MD care, MD satisfaction, RN care, RN satisfaction); patients & surrogates, rate RNs & MDs	Test-retest: kappa 0.43–0.86 (1–2 days); Cronbach's 0.83–0.95

QUAL-E (Quality of Life at End of Life)⁵⁵	Mixed diseases	Factor analysis reveals 5 domains: life completion, relationships with the health care system, preparation/anticipatory concerns, symptom impact, connectedness and affective social support.
Domain(s): Quality of life	24 items	Cronbach's alpha 0.6–0.84

RAND Mental Health Inventory (MHI-5)² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Emotional symptoms	5 items; self-administered	See Toolkit for details

Rapid Disability Rating Scale² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Functional status	18 items; medical professional rating	See Toolkit for details

Relatives' patient management questionnaire⁵⁶	Mixed cancer	Construct validity inter-scale correlations 0.6–0.86; discriminant low correlation with unrelated items
Domain(s): Advance care planning; Satisfaction	21 items, 5 scales in final version: families' attitudes, perceptions, and patterns of choice in management of terminal cancer patients	Cronbach's alpha 0.5–0.69

Resident Assessment Instrument for Palliative Care (RAI-PC)⁵⁷	NR	NR
Domain(s): Physical symptoms; Emotional symptoms; Functional status; Advance care planning; Spirituality; Palliative Outcomes	Builds on RAI for NH resident assessment; 9 domains; for clinician assessment in NH	Interobserver - kappa 0.77–0.9

Rotterdam Symptom Checklist (RSCL)³²	Single disease - breast cancer	Using cutoff value of tool, sensitivity/specificity 75%, 80%; misclassification rate 21%
Domain(s): Physical symptoms; Emotional symptoms; Functional status	Self-report; 3 subscales: physical (22 items), psychological (8 items), ADL (8 items); 4 point scale	NR

Santa Clara Strength of Religious Faith Questionnaire (SCSORF)⁵⁸	Mixed cancer	Convergent: strongly correlated with intrinsic religiosity, moderately correlated with religious practice, perception of self as spiritual, comfort derived from religion.
Domain(s): Spirituality	10-items developed to evaluate links with psychological health	Test-retest: 0.82; Cronbach's alpha 0.95.

Satisfaction With Care at the End of Life in Dementia (SWC-EOLD)¹⁰	Single disease - dementia	Item-total correlations range 0.33 to 0.79
Domain(s): Satisfaction	10 items; 4-point scale; one-factor	Cronbach's alpha 0.90

Smith-Falvo Paitent-Doctor Interaction Scale² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Continuity of care	17 items; self-administered	See Toolkit for details

Spiritual Perspective Scale² ^Toolkit	Mixed disease;	See Toolkit for details
Domain(s): Spirituality	10 items; self-administered	See Toolkit for details

Spiritual Well-Being Scale² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Spirituality	20 items; self-administered	See Toolkit for details

Stanford Health Assessment Questionnaire² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Functional status	20 items; interviewer/telephone or self-administered	See Toolkit for details

Support Team Assessment Schedule (STAS)^59, ⁶⁰	Mixed diseases - broadly across hospice patients; one study⁶⁰ applied to acute care oncology unit and a palliative care unit	Validity by comparison of type of rater: kappa for patient to staff (n=62–78) ranged from 0.12–0.78, total score Spearman rho 0.66; kappa for family to staff (n=58–67) ranged from -0.06–0.51, total score Spearman rho 0.44. Validity by comparison to patient rating - overall r=-0.09 palliative care and r=0.28 oncology (p>0.05); to family rating overall r=0.38 palliative care and r=0.37 oncology (p>0.05); item kappa 0.00 – 0.61.
Domain(s): Physical symptoms; Multidimensional measure	17 items, scale 0–4; 7 items grouped into a) patient and family items (4) and b) service items (3); interview administered	Interobserver reliability mostly r=0.4–0.6 (range 0.27–1.0) ; intraobserver reliability (r=-0.33–0.88) for overall score and range 0.1–1.0 for items; test-retest 0.50 for palliative care team and 0.71 for oncology team

Symptom Distress Scale (SDS)⁶¹	Mixed diseases - applied to symptoms in females with lung cancer	Factor analysis with principal components and varimax rotation - 5 factor 65% variance; also correlation of certain items to parts of Karnofsky Performance Status (r= -0.27 to -0.48) overall r=-0.58
Domain(s): Physical symptoms	10 items, self-report; modified to 13 items for lung cancer in 1980s	NR

Symptom Management at the End of Life in Dementia (SM-EOLD)¹⁰	Single disease - dementia	Item-total correlations range 0.18 to 0.66; correlations for symptom items on CAD-EOLD r = 0.475 to 0.559
Domain(s): Physical symptoms, Emotional symptoms	9 items; frequency ratings of multiple symptoms	Cronbach's alpha 0.78

Symptom Monitor⁶²	Mixed diseases	NR
Domain(s): Physical symptoms	10-item diary for physical symptoms	Inter-rater ICCs > 0.75

Toolkit After-Death Bereaved Family Member Interview⁶³ ² ^Toolkit	Mixed diseases (hospice, nursing homes, & hospital)	See Toolkit for additional details; scales moderately correlated with overall satisfaction and with corresponding individual rating question for the construct; families of those who died in hospice reported better care - significant for three of the eight scores
Domain(s): Satisfaction	8 domains, telephone survey with family member 3–6 months after death; up to 133 items	Cronbach's >0.7 for >3 item scales, 0.58 for 3-item scales; test-retest: 34 items had Kappa/ICC <0.4 - low ICC question dropped.

Willingness to Accept Life-sustaining Treatment instrument (WALT)⁶⁴	Mixed diseases; associated with age, ethnicity, & functional impairment	face: reviewed by patients & experts; correlated with simpler measure of preference
Domain(s): Advance care planning	No description provided	inter-rater 0.73–0.95; test-retest 0.49–0.93

Wisconsin Brief Pain Questionnaire² ^Toolkit	Mixed diseases	See Toolkit for details
Domain(s): Physical symptoms	17 items; self-administered	See Toolkit for details

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Lorenz K, Lynn J, Morton SC, et al. End-of-Life Care and Outcomes. Rockville (MD): Agency for Healthcare Research and Quality (US); 2004 Dec. (Evidence Reports/Technology Assessments, No. 110.) Appendix H.