Appendix e-1. Supplementary information about assessment instruments

The PQoLC(e1) is a 40-item, five-point (1,‘not at all’ to 5, ‘very much’) scale that assesses 6 dimensions of quality of life over the last seven days and has been extensively validated (e1-e6). All items start with the phrase, ‘Over the previous seven days, how well could (or were) you …’The inventory includes assessment of the following components: 1) General functionalstatus (i.e. performance capacity that includes both physical and mental aspects; e.g. ‘perform physically demanding work’ or ‘concentrate throughout the day’; 8 items); 2) ability to joy life and to relax (e.g. ‘calm down and relax’ or ‘become interested in something’; 8 items); 3) positive affect (e.g. ‘in a good mood’ or ‘active and full of energy’; 5 items); 4) negative affect (e.g. ‘nervous and restless’ or ‘desperate and without hope’; 8 items); 5) ability to maintain and develop social contacts (or social role capacity, e.g. ‘provide support or help to others’ or ‘keep up contacts with friends and acquaintances’; 6 items) ; 6) sense of belonging (e.g. ‘lonely, even if you weren’t alone’ or ‘feeling well and belonging to a circle of family or friends’; 5 items).Unlike most HRQoL measures that focus upon impairment,(e7) this inventory includes subscales of positive areas of functioning, and it shows high sensitivity to change.(e1, e8)The PQoLC has been widely employed in the international literature (e2-e4, e6, e9-e13).

The disease-specific HRQoL instrument employed was the German version of the 28-item Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS; five subscales, fatigue/thinking(4 items); lower limb mobility (5 items); upper limb mobility (5 items); social communication (6 items); and mood (8 items); also published in English).(e14) A five-point scale (1, ‘not at all,’ to 5, ‘very much’) assesses self-report of complaints during the last seven days. A number of items were modified from the Functional Assessment of Multiple Sclerosis Quality of Life(e15) and the SF-36.(e16)Well validated, it exhibits low-to-moderate sensitivity to change(14, 17)andhas also been frequently employed in scientific studies published in English.(e18-e22).

Fatigue was measured with the validated German version(e23) of the Modified Fatigue Impact Scale (MFIS).(e24) Depression was assessed with the validated German version(e25) of the Center for Epidemiological Studies Depression Scale (CES-D). Anxiety (STAI) was evaluated by means of the validated German version(e26) of the Spielberger Trait Anxiety Inventory(e27). The three former instruments are all PROs that are very commonly used in empirical investigations.

Neuropsychological status was evaluated by means of the Multiple Sclerosis Inventory of Cognition(MUSIC)(e28). Thisis a screening instrument administered by psychologist or physician that has been designed to measure characteristic MS-related neuropsychological changes.(e29, e30) The screening i requires 10-15 minutesand ncludesfive cognitivetests: Three quantify deficits of 1) verbal short-term and 2) long-term memory, and 3) susceptibility to interference using two successive word lists. The remaining tests measure 4) cognitive processing speed and inhibitory control in a Stroop-like task (naming animal silhouettes with and without conflicting written labels), and 5) verbal fluency and mental set-shifting employing an oral word association task with continuously controlled alternation between naming animals and furniture. MUSIC total and subscores have been related to both cerebral lesion topographical distribution and lesion load.(e31)

References

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