Table 1 Instruments used as primary and secondary outcome measures
| Â | What does the tool measure | Tool characteristics & psychometric properties |
|---|---|---|
QUALID*†[49] | QoL by cognitive function, health, function, social and psychological well-being. | 11 behaviours rated on a 5-point Likert scale (range 11–55). Excellent reliability, internal consistency and validity are reported. Lower score indicates higher QoL |
QUALIDEM*†[50] | QoL by self-image, affect, restlessness, care and social relation, feeling at home & active. | 40 items scored 0–3 in 10 subscales yielding a sum score for each subscale; care relationship (0–21), positive affect (0–18), negative affect (0–9), restless tense behaviour (0–9), positive self-image (0–9), social relations (0–18), feeling at home (0–12), having something to do (0–6), undefined items (0–9). Sufficient reliability and validity are reported |
QoL by mobility, self-care, activities, pain/discomfort and anxiety/depression, and impression of health | Patient or care-giver indicates patient`s state in f the 5 dimensions, according to 3 levels: no, some or extreme problems, and total impression of health (0–100). Scarce evidence for use in NH setting & with/in people with dementia | |
Neuropsychiatric symptoms in dementia, caregiver distress. | Total and subscale scores are provided based on frequency & severity of symptoms (range 0–144). Good validity and reliability of the Norwegian version of the NPI-NH. Including The neuropsychiatric inventory caregiver distress scale | |
CMAI*†[53, X7] | Agitation & behavioural disturbances | 29 items (range 29–203). Good validity & reliability |
CSDD*†[54] | Depression in people with dementia | 19 items rated from 0=no symptom to 2=severe. ≥8 = depression, >12=moderate-severe depression. Satisfactory inter-rater reliability and validity |
MOBID-2 Pain Scale*†[55] | Two-part pain location and intensity in people with advanced dementia. | Pain intensity inferred by the patient’s pain behaviours during standardized, guided movements (Part 1), and pain behaviours related to internal organs, head and skin (Part 2). Excellent reliability, validity and good responsiveness |
MMSE †[71] | Differentiation of severity of cognitive impairment | 30-point scale where 0 to 11=severe impairment, 12 to 17=moderate, 18 to 23=mild, 24 to 30=no impairment |
FAST*†[42, X14] | Severity of dementia | Stages dementia in 7 stages, 1 normal, 2 normal ageing, 3 possible dementia, 4 mild, 5 moderate, 6 and 7 severe dementia. Good reliability and validity |
ADL*†[57] | Physical function by rating activities; feeding, moving, toilet and dressing. | The scale includes 6 items (range 0–30) Lower values indicates better functioning and independence |
CGIC* [72] | Perceived improvement and efficacy | 7-point rating ranging from very much worse (0) to very much improved (6). Not intended as a sensitive measure of small changes, but for changes considered clinically significant. |
RUD-FOCA* [44] | Cost-analysis of time use during 24 hours | Total time per 24 hours is summed and mean time is calculated by records of required care. Validated for use in NHs, acceptable test-retest reliability and construct validity |