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Table 2 Psychological factor measurements

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

Psychological factors Measurement and references Number of items Description Scoring system Generic/ALS-specific measure References in this review
Anxiety Hamilton rating scale for anxiety (HAM-A)
Hamilton (1959) [63]
14 To assess the severity of symptoms of anxiety. Each of the items contains a number of symptoms, and each group of symptoms is rated on a scale. 5-point scale. Total scores for anxiety range from 0 to 56.
Score interpretation:
<17: mild severity
18–24: mild to moderate severity
25–30: moderate to severe
Generic [40]
  Hospital Anxiety and Depression Scale subscale anxiety (HADS-a)
Zigmond (1983) [54]
7 To assess psychological distress in medically ill patients. The instrument concentrates on the psychic rather than the somatic symptoms of mood disorder in order to provide an assessment of mood independent of levels of physical disability in patients with medical illnesses. 4-point scale. Total scores for anxiety range from 0 to 21
Score interpretation:
≤7: non-cases
8–10: possible clinical levels of distress
11–21: clinical levels of distress
Generic [15, 38]
  Hospital Anxiety and Depression Scale subscale anxiety (HADS-a)—modified version 1
Gibbons (2011) [56]
6 To assess psychological distress in medically ill patients. The original HADS was modified with removal of question 11 of the original HADS “I feel restless as if I have to be on the move”. 4-point scale. Total scores for anxiety range from 0 to 18.
Score interpretation:
Scores of 9–18: case level anxiety
ALS [37]
  State and Trait Anxiety Inventory (STAI)
Spielberger (1968) [64]
40 To assess trait and state anxiety.
STAIs: 20 items assess trait anxiety. STAIs is defined as an unpleasant emotional arousal in face of threatening demands or dangers;
STAIt: 20 items assess state anxiety. STAIt reflects the existence of stable individual differences in the tendency to respond with state anxiety in the anticipation of treating situations.
These two parts differ in the item wording, in the response format (intensity versus frequency), and in the instructions given for responses.
4-point scale. Total scores for anxiety (STAIs and STAIt) range from 20 to 80.
Score interpretation:
20–39: low anxiety
40–59: medium anxiety
60–80: high anxiety
Generic [41]
Depression Beck Depression Inventory (BDI)
Beck (1961) [53]
21 To assess severity of depressive symptoms. 4-point scale. Total scores for depression range from 0 to 63.
Score interpretation:
0–9: no depressive symptoms
10–18: mild to moderate depressive symptoms
19–29: moderate to severe depression
30–63: severe depression
Generic [10, 27, 44]
  Hamilton rating scale for depression (HAM-D)
Hamilton (1960) [63]
21 To assess patient’s level of depression.
The first 17 of the 21 items contribute to the total score and items 18–21 give additional information, not part of the scale, such as paranoia and diurnal variation
8 items 5-point scale; 9 items 3-point scale.
Total scores for depression range from 0 to 50.
Score interpretation:
0–7 = normal
8–13 = mild depression
14–18 = moderate depression
19–22 = severe depression
23–50 = very severe depression
Generic [40]
  Hospital Anxiety and Depression Scale subscale depression (HADS-d)
Zigmond (1983) [65]
7 To assess psychological distress in medically ill patients. The instrument concentrates on the psychic rather than the somatic symptoms of mood disorder in order to provide an assessment of mood independent of levels of physical disability in patients with medical illnesses. 4-point scale. Total scores for depression range from 0 to 21.
Score interpretation:
≤7: non-cases
8–10: possible clinical levels of distress
11–21: clinical levels of distress
Generic [15]
  Hospital Anxiety and Depression Scale subscale depression (HADS-d) - modified version 2
Abrahams (1997) [66]
6 To assess psychological distress in medically ill patients. The original HADS was modified with removal of question 8: “I feel slowed down”, as it was felt likely that this would falsely exaggerate the measure of depression due to the physical symptoms of ALS. 4-point scale. Total scores for depression range from 0 to 18.
Score interpretation:
≤7: non-cases
8–10: possible clinical levels of distress
11–21: clinical levels of distress
ALS [38]
  Hospital Anxiety and Depression Scale subscale depression (HADS-d) - modified version 1
Gibbons (2011) [56]
6 To assess psychological distress in medically ill patients. The original HADS was modified with removal of question 8: “I feel slowed down”. 4-point scale. Total scores for depression range from 0 to 16 (Two items in the depression subscale were recorded 0-1-1–2).
Score interpretation:
Scores of 8–16: case level depression.
ALS [37]
  Depressive disorders: DSM-IV. American Psychiatric Association (2000) [67] 9 To assess a major depressive disorder. Score interpretation:
5 out of 9 symptoms have to be present and represent a change from previous functioning; at least one of the symptoms is either (1) depressed mood or (2) loss of interest or pleasure.
Generic [45]
  ALS-Depression-Inventory (ADI-12)
Kubler (2005) [34]
12 To assess depressive symptoms, specifically developed for ALS patients and addresses depressive symptoms excluding increasing physical impairments commensurate with ALS. 4-point scale. Total scores for depression range from 12 to 48.
Score interpretation:
<22: absence of depression
22–28: mild depression
>28: clinically relevant depression
ALS [28]
  Zung Depression Scale (ZDS);
Zung (1965) [68] also called
Zung Self-Rating Depression Scale (SDS) (1965)
20 To assess depression 4-point scale. Total scores for depression range from 20 to 80
Score interpretation:
50–59: mild depression
60–69: moderate depression
70–80: severe depression
Generic [13, 4143]
Mood Profile of Mood State short-form (POMS-SF) McNair (1992) [69] 37 To assess six states of mood: tension-anxiety, depression-dejection, anger-hostility, vigour-activity, fatigue-inertia, and confusion-bewilderment. Abbreviated 37-item version of the original scale using the 5-point Likert Scale; 0 (not at all) to 4 (extremely). Total mood disturbance (TMD): sum of the subscales.
Score interpretation:
Higher scores reflect higher presence of the mood state.
Generic [19]
Religiosity Idler Index of Religiosity (IRR)
Idler (1987) [70]
4 To assess the level of religiosity. It addresses both public and private aspects of religiosity:
Public religiosity (IIR-Pu) (2 items): frequency of church attendance and number of church members known personally
Private religiosity (IIR-Pr) (2 items) how religious they perceived themselves to be and the amount of strength and comfort obtained from religious practices.
Public religiousness: 1-item, 6-point scale; 1-item, 4-point scale
Private religiousness: 1-item, 4- point scale; 1-item, 3-point scale
The religiosity scores are summed to produce public, private, and total religiosity; scores range from 2–10, 2–7 and 4–17, respectively.
Score interpretation:
Higher scores indicate higher level of religiosity.
Generic [13, 14, 16, 31]
Spirituality Spiritual Well-being Scale (SWBS) (1)
Reed (1987) [71]
10 To assess the level of spiritual well-being. 6-point scale. Total scores of spiritual well-being range from 6 to 36.
Score interpretation:
Higher scores indicate higher spiritual well-being.
Generic [16]
  Spiritual Well-being Scale (SWBS) (2)
Ellison (1983) [72]
20 The scale consists of 10 religious well-being items (RWB) and 10 existential well-being items (EWB); spiritual well-being. 6-point scale. Total scores (RWB + EWB) of spiritual well-being range from 20 to 120.
Score interpretation:
Higher scores indicate higher spiritual well-being.
Generic [47]
Mindfulness Langer mindfulness scale (LMS)
Pirson (2012) [73]
14 Three domains associated with mindful thinking: novelty seeking, engagement and novelty producing. Total scores range from 14–98,
Score interpretation:
Higher scores reflect higher mindfulness
Generic [29]
Hopelessness Becks Hopelessness Scale (BHS)
Beck (1974) [74]
20 To assess three major aspects of hopelessness: feelings about the future, loss of motivation, and expectations. 2-point scale. Total scores of hopelessness range from 0 to 20.
8–13: moderate hopelessness
>14: severe hopelessness
Score interpretation:
Higher scores reflect higher levels of hopelessness.
Generic [45]
Perception of burden to others Zarit Burden Inventory (ZBI) – revised
Zarit (1980) [75]
3 Three items of the original ZBI were revised to measure patient beliefs that their medical condition stressed, burdened, or caused financial hardship to their family. 5-point scale. Total score of perception of burden to others (1 item) range from 0 to 4.
Score interpretation:
Higher score indicates higher perception of burden to their family.
ALS [45]
Cognitive appraisal Appraisal scale
Smith (1993) [76]
4 To assess patients’ primary (motivational relevance, motivational congruence) and secondary appraisal (problem-focused and emotion-focused coping potential) 9-point scale. Scores per item range from 1 to 9. Total scores are not mentioned.
Score interpretation:
The larger the difference between the two items of primary appraisal (motivational relevance and motivational congruence), the more patients feel threatened by the disease.
Generic [30, 36]
Coping Motor Neuron Disease Coping Scale (MNDCS) – adapted version 1
Lee (2001) [35]
18 To assess extent to which patients relied on the coping strategies.
18 questions of the original 22-item scale were assigned to 6 subscales.
6-point scale. Total score for each type of coping was obtained by generating the mean score of the grouped scales. Ranges of total scores are not mentioned.
Score interpretation:
Higher score reflects greater use of the coping strategy.
ALS [30, 36]
  Motor Neuron Disease Coping Scale (MNDCS/Cope-MND)—adapted version 2
Lee (2001) [35]
9 To assess extent to which patients relied on the coping strategies.
The original MNDCS was reduced to a 9-item scale.
6-point scale. Ranges of total scores are not mentioned. Score interpretation:
Higher scores reflect greater use of the coping strategy.
ALS [37]
  The Brief COPE
Carver (1997) [77]
28 Measures 14 dimensions of coping: distraction; active coping; denial; emotional support; instrumental support; disengagement; venting; positive reframing; planning; acceptance; humour; religion; self-blame; substance use. Each dimension consists of 2 items. 4-point scale. No overall score. Score range per dimension ranges from 2 to 8, per item from 1 to 4.
Score interpretation:
Higher score reflects greater use of the coping strategy.
Generic [46]
Personality traits NEO Five Factor Inventory (NEO-FFI) Costa (1992) [78] 60 To assess the five dimensions of personality, postulated by the five-factor model of personality: neuroticism, extraversion, openness, agreeableness, and conscientiousness. 5-point scale. Each of the five-factor subscales consists of 12 items, resulting in mean factor scores ranging from 0 to 4.
Score interpretation:
Higher score reflects a type of personality.
Generic [27]