Table 1.

Categories of End-of-Life Care and Recommended Measures Adapted from the Online Toolkit (Teno 2005)

Domain	Toolkit Recommended Measures
Quality of life	McGill QOL Questionnaire, Missoula-VITAS QOL Index, EORTC (QLQ C-30), and FACT/FACIT (Fact-G)
Physical symptoms	McGill Pain Questionnaire, Wisconsin Brief Pain Questionnaire, Memorial Pain Assessment Card, Edmonton Symptom Assessment System (ESAS)*, and Memorial Symptom Assessment Scale (MSAS)†
Emotional and cognitive symptoms	Profile of Mood States, Memorial Symptom Assessment Scale, CES-D, and RAND Mental Health Inventory
Functional status	Index of Independence in ADLs, Barthel Index, Physical Self-Maintenance Scale, Rapid Disability Rating Scale, Stanford Health Assessment Questionnaire, and FIM™ Instrument
Advance care planning	Toolkit of Instruments to Measure End of Life Care Bereaved Family Member Interview
Continuity of care	Picker-Commonwealth Single Item. Smith-Falvo Patient–Doctor Interaction Scale, McCusker Scale, and Chao Patient Perception
Spirituality	Meaning in Life Scale, Spiritual Well-Being Scale, Spiritual Perspective Scale, Death Transcendence Scale, Death Attitude Profile, and Herth Hope Index
Grief and bereavement	Grief Resolution Index and Anticipatory Grief Scale
Satisfaction and quality of care	Medical Outcome Study Satisfaction Survey, Toolkit of Instruments to Measure End of Life Care Bereaved Family Member Interview, Picker-Commonwealth Survey, and FAMCARE‡
Caregiver well-being	Caregiver Strain Index and Caregiver Reaction Assessment

^*More recent studies of the ESAS have shown that telephone administration was possible in 62% of palliative care patients (Chow et al. 2001). Validation data show correlation to MSAS global distress r=0.73; concurrent validity ESAS summary distress score to MSAS demonstrated: TMSAS scale (0.72), global distress index (GDI) (0.73), physical symptom subscale (0.74), and psychological 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 the item correlations reported as significant; calibration studies showed overlap for median values within scales for all the items; Cronbach's α 0.79; test–retest Spearman correlation 0.86 at two days and 0.45 at one week; all the items significantly correlated at two days (r=0.43–0.86) but at one week only pain (0.75), activity (0.65), depression (0.54), shortness of breath (0.53), and distress (0.45) were significantly correlated (Chang, Hwang, and Feuerman 2000).

^†A validation trial for the MSAS in noncancer patients where convergent validity to the Piper fatigue scale ranged from r=0.15 to 0.56 for cancer patients and 0.29–0.61 for noncancer patients (best for behavioral and sensory subscales of the PFS); factor analysis yielded one psychological factor and one physical symptom with three subgroups; Cronbach's α=0.85 in cancer patients (n=66) and 0.77 in noncancer end-stage group (n=69) (Tranmer et al. 2003). Also, Chang et al. report univariate correlations for the MSAS to RAND mental health inventory (MHI) well-being scale −0.60 (−0.53 to 0.66 for three subscales), MHI distress 0.65 (0.48–0.80), functional living index-cancer (FLIC) −0.78 (−0.61 to −0.78, subscales of FLIC range −0.45 to −0.73), SDS 0.79 (0.57–0.81), and Karnofsky −0.58 (−0.31 to −0.65); the physical and global distress index subscales performed better than the psychological symptom subscale (Chang et al. 1998).

^‡Kristjanson et al. report an interitem correlation criterion for the FAMCARE scale (minimum 50% with r=0.3–0.7) for 18 of 20 items, item correlation to total score of 0.4–0.76 for 15 of 20 items, and a Cronbach's α=0.90 (Kristjanson et al. 1997).