Monitoring Fatigue In Daily Life In Adults With Cerebral Palsy or Acquired Brain Injury

A single item variable: "How tired do you feel right now?" Rated on an 11-point slider scale ranging from 0 (no fatigue) to 10 (severe fatigue).

SENS motion® wearable activity sensor is an accelerometer that will be attached to the thigh using a patch. The accelerometer will be used to measure physical activity, sedentary behavior, and sleep. If the participants have any physical impairments, the patch will be worn on the least affected thigh.

The Consensus Sleep Diary (CSD) is a self-report 9-item instrument designed to track sleep patterns on a daily basis for typically 1-2 weeks. The questions ask about: (1) the time of getting into bed; (2) the time at which the individual attempted to fall asleep; (3) sleep onset latency; (4) number of awakenings; (5) duration of awakenings; (6) time of final awakening; (7) final rise time; (8) perceived sleep quality, rated on a 5-level scale from 1 (very poor) to 5 (very good); and (9) an additional space for open-ended comments from the respondent.

We added two items from the expanded CSD for Morning about napping or dozing during the day: (10) number of naps/dozings; and (11) duration of naps/dozings.

Participants are instructed to complete the CSD within one hour of getting out of bed in the morning.

A single item variable: "How much energy do you have right now?" Rated on an 11-point slider scale ranging from 0 (pictogram of an empty battery) to 10 (pictogram of a full battery).

A single item variable: "How does your fatigue feel right now?" Response categories are: "Primarily physical", "Primarily mental", "Both", "Neither", and "Not relevant"

A single item variable: "How alert do you feel right now?". Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "How exhausted do you feel right now?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "How much pain do you have right now?" Rated on an 11-point slider scale ranging from 0 (no pain) to 10 (worst pain imaginable).

A single item variable: "How sleepy do you feel right now?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much)

A single item variable: "How well are you able to concentrate right now?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "How much of an effort is it to do anything right now?" Rated on an 11-point slider scale ranging from 0 (none at all) to 10 (very much).

A single item variable: "How happy do you feel right now?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "How sad do you feel right now?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "How anxious do you feel right now?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "How irritable do you feel right now?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "What were you doing when you received the notification?" Multiple choice response.

A single item variable: "How physically demanding is the task you were doing?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "How mentally demanding is the task you were doing?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "How motivated were you for the task you were doing?" Rated on an 11-point slider scale ranging from 0 (not at all) to 10 (very much).

A single item variable: "Where were you when you received the notification?" Multiple choice response.

A single item variable: "How many sensory impressions were present around you when you received the notification?" Rated on a 5-point Likert-type scale: 0 (Very low degree), 1 (Low degree), 2 (Some degree), 3 (High degree), and 4 (Very high degree).

A single item variable: "Who were with you when you received the notification?" Multiple choice response.

A self-report 9-item questionnaire measuring the impact of fatigue in daily life. The scale provides a total average score of the nine items, ranging from 1 to 7, with 1 indicating no or little experience with functional limitations due to fatigue and 7 indicating severe functional limitations due to fatigue.

A self-administered 37-item questionnaire. It includes a total fatigue score (the sum of items 1-31), ranging from 31 (low fatigue) to 157 (high fatigue), and two subscales: The Impact Subscale (items 1-17, score range from 17 to 87) and the Management and Activity Modification Subscale (items 18-31, score range from 14 to 70). Higher scores indicate more fatigue. The last 6 items (items 32-37) are a mix of multiple choice and open-ended questions investigating daily fatigue and management that are not included in any scores.

The complete FISSA will be administered to participants with cerebral palsy only. The last 6 items will also be administered to participants with acquired brain injury.

The Dutch Multifactor Fatigue Scale (DMFS) is a self-administered questionnaire designed to assess the multidimensional nature of fatigue and coping strategies in individuals with acquired brain injury.

DMFS has 38 items scored on a 5-point Likert-type scale ranging from 1 (No, I strongly disagree) to 5 (Yes, I strongly agree). DMFS includes 5 subscales: Impact of Fatigue (score range from 11 to 55), Signs and Direct Consequences of Fatigue (score range from 9 to 45), Mental Fatigue (score range from 7 to 35), Physical Fatigue (score range from 6 to 30), and Coping with Fatigue (score range from 5 to 25). Higher scores indicate more fatigue or worse coping with fatigue.

DMFS will be administered to participants with acquired brain injury only.

A self-report questionnaire assessing sleep quality over a one-month period. The questionnaire includes 19 self-rated questions and 5 questions rated by the bed partner or roommate, covering different sleep-related factors such as bedtime habits, sleep disturbances, sleep duration, and daytime impairments. The 19 self-rated items are scored from 0 to 3 to create seven component scores, which are added to produce a global PSQI score, ranging from 0 (no difficulty) to 21 (severe difficulty).

A 9-item self-report questionnaire to screen for depression. Each question is scored on a scale from 0 to 3 with higher scores indicating more severe symptoms.

A self-report 10-item questionnaire designed to measure psychological stress. Items are scored on a scale from 0 to 4. Higher scores indicate more perceived stress.

The EQ-5D-5L is a standardized instrument for measuring health-related quality of life. It contains the EQ-5D-5L Descriptive System and the EQ Visual Analog Scale (EQ VAS). The descriptive system comprises 5 dimensions: Mobility, Self-care, Usual activities, Pain/discomfort, and Anxiety/depression. Each dimension is rated on five levels: 1 (No problems), 2 (Slight problems), 3 (Moderate problems), 4 (Severe problems), and 5 (Extreme problems). The ratings on the five dimensions define a health profile. Health profiles will be converted to health state index scores using the Danish EQ-5D-5L value set, which ranges from -0.757 (worst health) to 1 (perfect health).

The EQ VAS records the respondent's self-rated health on a vertical, visual analog scale, ranging from 0-100, where the endpoints are labelled 'The best health you can imagine' (100) and 'The worst health you can imagine' (0).

A short, self-administered questionnaire developed by the World Health Organisation to measure disability and functioning covering mobility, cognition, activities of daily living, participation in society and getting along with others. Items are scored on a 5-point Likert scale from 0 to 4 with higher scores indicating higher disability.

The Physical Activity Scale (PAS2) is a self-administered 9-item questionnaire that assesses physical activity. Respondents estimate daily hours and minutes spent on (1) sleeping, (2) sedentary work, (3) standing or walking work, (4) heavy physical work, (5) riding a bicycle or walking for transportation to and from work, and (6) sedentary activities during leisure time. In addition, respondents estimate weekly hours and minutes of (7) light, (8) moderate, and (9) vigorous physical activity during leisure time. The item responses are summarised as average time spent per day on sedentary behavior, light physical activity, moderate physical activity, and vigorous physical activity.

A brief screening tool to detect mild cognitive impairment. The Montreal Cognitive Assessment is scored out of a total of 30 points. A score of 26 or above is considered normal, while scores below 26 may indicate mild cognitive impairment. Scores can be used to indicate severity: 18-25 indicates mild impairment, 10-17 indicates moderate impairment, and below 10 indicates severe impairment.

Assessment of visual attention and spatial processing. The total time taken for the task is recorded and 1 point is given for every correctly cancelled heart shape. The overall accuracy is recorded as "Total Correct" (maximum score = 50). This score contributes to the overall assessment of attention, and reflects performance of sustained and selected attention. A space asymmetry score is calculated, and a positive score indicates left-sided egocentric neglect, and a negative score indicates right-sided egocentric neglect. An object asymmetry score is calculated, and a positive value indicates left allocentric neglect. A negative asymmetry score indicates right allocentric neglect.

A standardised assessment of functional exercise capacity.

Self-reported. Single choice from 4 response options.

Self-reported. 3 response options.

Employment status is self-reported using 11 predefined response options. If currently employed, respondents indicate the average number of working hours per week. If on sick leave, respondents report their employment status prior to taking leave. If currently studying, respondents specify the type of education they are enrolled in.

The highest completed level of eduction is self-reported using 11 response options.

Self-reported. 4 response options

Respondents report their current living arrangement using six predefined reponse options. These options capture whether they live alone or with others, and whether they reside in their own home or in a shared living arrangement, with either a private or shared room.

Respondents report the number of people they currently live with and identify their relationship to these individuals by selecting from seven predefined categories: Partner, children under 25 years old, children above 25 years old, parents, other family members, friends or other types of relationships, and other.

BMI is calculated based on self-reported weight in kilograms and height in meters and centimeters.

Respondents indicate whether and how frequently they use tobacco or nicotine products using a five-point scale. If any use is reported, respondents select the type(s) of product used from five predefined categories. If cigarette use is indicated, the average number of cigarettes smoked per day is reported.

The average number of standard drinks consumed per week is self-reported.

Respondents indicate their use of substances other than alcohol or nicotine using four predefined response categories. If any use is reported, respondents may specify the type of substances used in an open-text field.

Respondents specify any illness, diagnosis, handicap, or symptoms using an open-text field.

Respondents indicate their current use of medication by selecting one of four predefined response options: "No", "As needed", "Regularly", or "Prefer not to answer". If any use is reported, respondents specify the type(s) of medication used by selecting from 14 predefined categories. For each category selected, they are asked to name the specific medication(s) taken, and report the frequency and duration of use. Respondents are also asked to indicate any adverse effects.

An 8-item self-report questionnaire covering smartphone usage and habits. Respondents indicate whether they own a smartphone, how frequently they use it, and for what purposes. They also report where their smartphone is typically located when at home, at work or during study, and while in transit. Additionally, respondents indicate whether they use their smartphone to monitor their health and, if so, which health-related apps they have used.