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Table 4 Health-related Quality of Life measurements

From: Associations between psychological factors and health-related quality of life and global quality of life in patients with ALS: a systematic review

Health-related QoL Measurement and reference Number
of items
Description References in this review
The 36-items Short Form of the Medical Outcomes Study questionnaire (SF-36)
Ware (1993) [52]
36 SF-36 is a standardised, generic health-related quality of life measure. It consists of 36 items covering 8 dimensions. Each dimension is transformed into a 0–100 scale on the assumption that each question carries equal weight. High scores indicate good QoL. Four of these dimensions (limitations in physical functioning (PF); role limitations due to physical health problems (RP), bodily pain (BP), and general health perceptions (GH)) are summarized in the Physical Component Score (PCS), and four others (vitality (VT); social functioning (SF), role limitations due to emotional problems (ER), general mental health (MH)), in the Mental Component Score (MCS). [40, 44, 46]
Sickness Impact Profile (SIP)
Bergner (1981) [84]
136 SIP measures physical, mental and social aspects of health-related functioning; it contains statements regarding behaviour “sickness impact” and the individual is asked to respond by checking items that describe their health status. SIP contains 136 items in 12 categories and two dimensions (physical and psychosocial). Overall, category and dimension scores may be calculated from 0—100 (best). [47]
Sickness Impact Profile (SIP/ALS-19)
McQuire (1997) [39]
19 SIP/ALS-19 assess health-related QoL. It is a questionnaire consisting of 19 items from the full SIP (Sickness Impact Profile) believed to have the greatest impact on QoL, based on opinions of ALS clinical specialists. Extracted from the full SIP total score range from 0—100 (best). [14, 31]
EuroQoL-5D
Brazier (1993) [85]
5 EuroQoL-5D assess health-related QoL. It consists of five questions that relate to five dimensions of health: mobility, self-care. usual activities, pain/discomfort, anxiety/depression. Each dimension is divided into three levels of severity (1, no problem; 3 severe problem). The EQ-5D-index score can be calculated. [10, 44]
EQ VAS
Konig (2005) [86]
1 EQ VAS assess health-related QoL. It is a visual analogue scale (VAS thermometer type) to rate patients current HRQoL ranging from 0 (worse imaginable health state) to 100 (best imaginable health state). [44]
World Health Organization Quality of Life brief questionnaire (WHOQoL-BREF)
Skevington (2004) [87]
26 WHOQoL-BREF assesses quality of life within the context of an individual’s culture, value systems, personal goals, standards and concerns. Generic instrument, measures QoL of life across 4 domains: physical health (7 items), psychological health (6 items), social relationships (3 items) and environment (8 items). Domain scores can be transformed to total scores from 0 (worse imaginable health state) to 100 (best imaginable health state). Two other items measure overall QoL and general health. Items are rated on a 5-point scale (low score of 1 to high score of 5) to determine a raw item score. Subsequently, the mean score for each domain is calculated, resulting in a mean score per domain that is between 4 and 20. Finally, this mean domain score is then multiplied by 4 in order to transform the domain score into a scaled score, with a higher score indicating a higher QoL. [19, 37]
Quality of Life Index (QL-Index)
Spitzer 1981 [88]
5 The Spitzer Qol Index (SQLI/ QLI/ QL-Index) assesses health-related QoL in palliative care populations. It covers five dimensions of quality of life: activity, daily living, health, support of family and friends, and outlook on life. Each dimension is rated on a three-point Likert scale (0 to 2), with the range of scores from 0 to 10. Lower scores reflect a higher QoL. [43]