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Table 2 Description of the disease-specific PROMs

From: Change in health status in long-term conditions over a one year period: a cohort survey using patient-reported outcome measures

PROM/ Country of development

Dimensions (n items)

Score range

Mini Asthma Quality of Life Questionnaire (mini-AQLQ) [[14],[15]]/Canada

Total score (all 15 items), Activity limitations (4 items) , Symptoms (5 items), Emotional function (3 items), Environmental stimuli (3 items)

1-7 where 1 is ‘severe impairment’ and 7 is ‘no impairment’

Clinical COPD questionnaire (CCQ) [[16],[17]]/The Netherlands

Total score (all 10 items), Symptoms (4 items), Functional state (4 items), Mental state (2 items)

0-6 where 0 ‘very good health status’ and 6 ‘extremely poor health status’

Diabetes Health Profile (DHP) [[18],[19]]/United Kingdom

Psychological distress (6 items), Barriers to activity (7 items), Disinhibited eating (5 items)

0-100 with a higher score representing higher dysfunction

Quality of Life in Epilepsy Inventory (QOLIE) [[20]]/United States NB we used 30 items as the Visual Analogue Scale was not included

Total score (all 30 items), Overall quality of life (2 items), Seizure/ worry (5 items), Emotional well-being (5 items), Energy/ fatigue (4 items), Cognitive (6 items), Medication effects (3 items), Social function (5 items)

0-100 with higher scores reflecting better quality of life

Minnesota Living with Heart Failure Questionnaire (MLHFQ) [[21],[22]]/United States

Total score (all 21 items), Physical dimension (8 items), Emotional dimension (5 items)

Total score 0–105, physical dimension score 0–40 and emotional dimension score 0–25. On all dimensions a higher score means more impairment

Stroke Impact Scale (SIS) [[23]]/United States

Strength (4 items), Memory (7 items), Emotion (9 items), Communication (7 items), Activities of Daily Living (ADL) (10 items), Mobility (9 items), Hand function (5 items), Handicap (8 items) , Physical dimension (hand function, strength, mobility and ADL, 28 items)

0-6 where 0 ‘very good health status’ and 6 ‘extremely poor health status’