Ane Søndergaard Thomsen

Possible error in the Danish version of the WHO Quality of Life (WHOQOL-BREF) Questionnaire

Abstract Background: The WHOQOL-BREF is widely used to measure quality of life. Aims: The goal of the present study was to use the questionnaire in a doctoral study. Methods: We studied all the instructions provided by the WHO. Results: In the Danish version of the WHOQOL-BREF there is a discrepancy between the negatively phrased question 9 and both the syntax file and the verbal instructions for coding the data provided by the WHO. Conclusions: This is a notification of possible error interpretations in projects that use the questionnaire. This could be corrected by manual correction in the coding process or by changing the negatively phrased question 9.

Is current brain injury rehabilitation enhancing the biopsychosocial model?: A 2-year post injury follow-up study

General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. ? Users may download and print one copy of any publication from the public portal for the purpose of private study or research. ? You may not further distribute the material or use it for any profit-making activity or commercial gain ? You may freely distribute the URL identifying the publication in the public portal ? Take down policy If you believe that this document breaches copyright please contact us at vbn@aub.aau.dk providing details, and we will remove access to the work immediately and investigate your claim. • Provides the stakeholders with educational information to facilitate the process of working together on their joint assignment • May take many forms depending on the organizations presenting concerns, from defining and identifying tacit assumptions to understanding the impact of these cognitions • Involves the formal application of theoretical and empirically supported psychological principles to facilitate a desired development within ethical and professional practice standards • Is used most extensively during early sessions and may be supplemented with reading materials and other educational resourcesObjectives: The prevalence of sleep difficulties is high after head injury (HI). Previous research suggests that HI patients with sleep problems require longer stays in rehabilitation units and that disturbance of arousal disrupts engagement in rehabilitation activities. The present study explored the prevalence and types of sleep disorders in patients with severe HI undergoing inpatient rehabilitation and whether the presence of sleep problems affects their rehabilitation. Methods: Twenty-three (n = 23) severe HI patients responded to a semi-structured clinical screening interview about their sleep–wake patterns and wore an actiwatch (an activity monitor that is associated with sleep and wakefulness) for 7 days. Participants also completed self-report measures on sleep, mood, fatigue, pain and daytime sleepiness. Information on rehabilitation variables, including frequency of aggressive behaviour, engagement in rehabilitation and level of disability was collected retrospectively from staff and rehabilitation notes. Results: Fifteen participants (65.2%) had sleep problems. Of these, 10 (43.8%) met formal diagnostic criteria for a sleep disorder and in five (21.7%) no underlying cause for sleep problems was identified. Diagnosed sleep disorders in the sample comprised insomnia (21.7%), post-traumatic hypersomnia (8.7%), circadian rhythm disorder (8.7%), sleep apnoea (4.3%), periodic limb movement disorder (4.3%) and rhythmic movement disorder (4.3%). Senior rehabilitation therapists estimated sleep disturbance as interfering with the rehabilitation process in 26% of the overall research sample (n = 23). Sleep quality, assessed by self-report measures (Pittsburgh Sleep Quality Index; PSQI) was not significantly associated with rehabilitation variables (Hopkins Rehabilitation Engagement Rating Scale). Poor sleep quality (PSQI) was associated with greater anxiety (r = 0.611), fatigue (r = 0.683) and daytime sleepiness (r = 0.529). Conclusions: Consistent with previous studies, sleep disorder and disturbed sleep was common in HI patients undergoing rehabilitation and was associated with anxiety, fatigue and daytime sleepiness. These findings highlight the importance of assessing and treating sleep problems in HI patients undergoing rehabilitation.OBJECTIVESFatigue after an acquired brain injury is common, and is characterized by limited energy reserves to accomplish ordinary daily activities. A typical characteristic of mental fatigue is that the mental exhaustion becomes pronounced during sensory stimulation or when cognitive tasks are performed for extended periods without breaks. There is a drain of mental energy upon mental activity in situations in which there is an invasion of the senses with an overload of impressions, and in noisy and hectic environments. Another typical feature is a disproportionally long recovery time needed to restore the mental energy levels after being mentally exhausted. The mental fatigue is also dependent on the total activity level as well as the nature of the demands of daily activities. For many people, there is an increased risk of doing too much and becoming even more fatigued.METHODSWe have developed an application for Windows Phone for assessment of mental fatigue. The Mental Fatigue Scale is used. The MFS is a multidimensional questionnaire containing 15 questions. The questions included in the MFS are based on symptoms described following longitudinal studies of patients with TBI, brain tumours, infections or inflammations in the nervous system, vascular brain diseases, and other brain disorders. The app also includes information about mental fatigue. RESULTSThis application can help people determine the level of mental fatigue and it can also serve to provide an overall picture of the severity of the condition, and detect changes in mental fatigue over time. The scores will be added up and the results will be presented in the form of a rating scale and a diagram. People can then see their results for one week ago, one month ago or a whole year ago. Today, the most important recommendations are to adapt to the energy available by doing one thing at a time, resting regularly and not overdoing things. However, this is challenging for most people and it may take a long time, even years, to adapt to a sustainable level. It may also be difficult for the person to learn by himself/herself and it can take several years of considerable struggle, frustration, despair and depression, to find the right balance between rest and activity. This app can help people to be aware of mental fatigue. If they connect the results to daily activities, the app may also help them to be more aware about what may alleviate and what may make mental fatigue worse. CONCLUSIONSWith regular assessment of mental fatigue, this app may give feedback and support in order to achieve an enduring balance between activities and rest.The application can be downloaded without cost: http://www.windowsphone.com/en-us/store/app/mental-fatigue/87d4cb88-c9b5-4ac9-9a92-b63a5d8f4d82Abstract presented at the Tenth World Congress on Brain Injury, 19-22 March 2014, San Francisco, United StatesObjectives: Head injury (HI) patients report frequent problems with memory, concentration, fatigue, irritability, temper, dizziness and headaches. Sleep problems are reported in up to 70% of patients after head injury and insomnia symptoms can be found in up to 30% of HI patients; these rates are significantly higher than those found in the general population. This study has conducted the first qualitative analysis on the impact of sleep difficulties in the quality-of-life of HI patients. Methods: Two groups of therapists (n = 16) participated in focus group discussions. The groups included speech therapists, neuropsychologists, assistant psychologist, nurses and support workers that have been working in two local rehabilitation centres for at least 6 months prior to the study. Community patients were recruited from a local HI supporting network (Headway) and were invited to participate in the study. Three groups of community patients (n = 4 per group) with severe HI were facilitated to discuss their sleep problems after the injury in a group setting. Group discussions lasted ∼45–60 minutes per group until saturation was achieved. Thematic analysis was used to qualitatively explore the beliefs, experiences and expectations associated with sleep disturbances following head injury. Results: Therapists and support staff reported that sleep difficulties are common in HI patients and that in most cases sleep disturbance is related not only to the HI itself but also to mental health or environmental factors. Staff felt that little attention is routinely paid to these problems during rehabilitation unless specifically linked to challenging behaviour. Fatigue was thought to be highly relevant and to have a negative effect on engagement and participation in rehabilitation. Patients thought that sleep problems became persistent after injury and the areas that emerged as being more affected were: mood, cognition, everyday functioning, physical health, concentration and cognition. Most patients reported severe insomnia symptoms associated with worry about life and family during the night. Conclusions: To provide better management and improve their rehabilitation it is essential to understand the therapists’ and patients’ expectations and perceptions of sleep difficulties after head injury. Qualitative analysis shows that sleep difficulties have a significant impact on the cognitive, affective and behavioural difficulties that many patients experience following a head injury.

Cross-sector and interdisciplinary co-operation in brain injury rehabilitation

General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. ? Users may download and print one copy of any publication from the public portal for the purpose of private study or research. ? You may not further distribute the material or use it for any profit-making activity or commercial gain ? You may freely distribute the URL identifying the publication in the public portal ? Take down policy If you believe that this document breaches copyright please contact us at vbn@aub.aau.dk providing details, and we will remove access to the work immediately and investigate your claim. • Provides the stakeholders with educational information to facilitate the process of working together on their joint assignment • May take many forms depending on the organizations presenting concerns, from defining and identifying tacit assumptions to understanding the impact of these cognitions • Involves the formal application of theoretical and empirically supported psychological principles to facilitate a desired development within ethical and professional practice standards • Is used most extensively during early sessions and may be supplemented with reading materials and other educational resourcesObjectives: The prevalence of sleep difficulties is high after head injury (HI). Previous research suggests that HI patients with sleep problems require longer stays in rehabilitation units and that disturbance of arousal disrupts engagement in rehabilitation activities. The present study explored the prevalence and types of sleep disorders in patients with severe HI undergoing inpatient rehabilitation and whether the presence of sleep problems affects their rehabilitation. Methods: Twenty-three (n = 23) severe HI patients responded to a semi-structured clinical screening interview about their sleep–wake patterns and wore an actiwatch (an activity monitor that is associated with sleep and wakefulness) for 7 days. Participants also completed self-report measures on sleep, mood, fatigue, pain and daytime sleepiness. Information on rehabilitation variables, including frequency of aggressive behaviour, engagement in rehabilitation and level of disability was collected retrospectively from staff and rehabilitation notes. Results: Fifteen participants (65.2%) had sleep problems. Of these, 10 (43.8%) met formal diagnostic criteria for a sleep disorder and in five (21.7%) no underlying cause for sleep problems was identified. Diagnosed sleep disorders in the sample comprised insomnia (21.7%), post-traumatic hypersomnia (8.7%), circadian rhythm disorder (8.7%), sleep apnoea (4.3%), periodic limb movement disorder (4.3%) and rhythmic movement disorder (4.3%). Senior rehabilitation therapists estimated sleep disturbance as interfering with the rehabilitation process in 26% of the overall research sample (n = 23). Sleep quality, assessed by self-report measures (Pittsburgh Sleep Quality Index; PSQI) was not significantly associated with rehabilitation variables (Hopkins Rehabilitation Engagement Rating Scale). Poor sleep quality (PSQI) was associated with greater anxiety (r = 0.611), fatigue (r = 0.683) and daytime sleepiness (r = 0.529). Conclusions: Consistent with previous studies, sleep disorder and disturbed sleep was common in HI patients undergoing rehabilitation and was associated with anxiety, fatigue and daytime sleepiness. These findings highlight the importance of assessing and treating sleep problems in HI patients undergoing rehabilitation.OBJECTIVESFatigue after an acquired brain injury is common, and is characterized by limited energy reserves to accomplish ordinary daily activities. A typical characteristic of mental fatigue is that the mental exhaustion becomes pronounced during sensory stimulation or when cognitive tasks are performed for extended periods without breaks. There is a drain of mental energy upon mental activity in situations in which there is an invasion of the senses with an overload of impressions, and in noisy and hectic environments. Another typical feature is a disproportionally long recovery time needed to restore the mental energy levels after being mentally exhausted. The mental fatigue is also dependent on the total activity level as well as the nature of the demands of daily activities. For many people, there is an increased risk of doing too much and becoming even more fatigued.METHODSWe have developed an application for Windows Phone for assessment of mental fatigue. The Mental Fatigue Scale is used. The MFS is a multidimensional questionnaire containing 15 questions. The questions included in the MFS are based on symptoms described following longitudinal studies of patients with TBI, brain tumours, infections or inflammations in the nervous system, vascular brain diseases, and other brain disorders. The app also includes information about mental fatigue. RESULTSThis application can help people determine the level of mental fatigue and it can also serve to provide an overall picture of the severity of the condition, and detect changes in mental fatigue over time. The scores will be added up and the results will be presented in the form of a rating scale and a diagram. People can then see their results for one week ago, one month ago or a whole year ago. Today, the most important recommendations are to adapt to the energy available by doing one thing at a time, resting regularly and not overdoing things. However, this is challenging for most people and it may take a long time, even years, to adapt to a sustainable level. It may also be difficult for the person to learn by himself/herself and it can take several years of considerable struggle, frustration, despair and depression, to find the right balance between rest and activity. This app can help people to be aware of mental fatigue. If they connect the results to daily activities, the app may also help them to be more aware about what may alleviate and what may make mental fatigue worse. CONCLUSIONSWith regular assessment of mental fatigue, this app may give feedback and support in order to achieve an enduring balance between activities and rest.The application can be downloaded without cost: http://www.windowsphone.com/en-us/store/app/mental-fatigue/87d4cb88-c9b5-4ac9-9a92-b63a5d8f4d82Abstract presented at the Tenth World Congress on Brain Injury, 19-22 March 2014, San Francisco, United StatesObjectives: Head injury (HI) patients report frequent problems with memory, concentration, fatigue, irritability, temper, dizziness and headaches. Sleep problems are reported in up to 70% of patients after head injury and insomnia symptoms can be found in up to 30% of HI patients; these rates are significantly higher than those found in the general population. This study has conducted the first qualitative analysis on the impact of sleep difficulties in the quality-of-life of HI patients. Methods: Two groups of therapists (n = 16) participated in focus group discussions. The groups included speech therapists, neuropsychologists, assistant psychologist, nurses and support workers that have been working in two local rehabilitation centres for at least 6 months prior to the study. Community patients were recruited from a local HI supporting network (Headway) and were invited to participate in the study. Three groups of community patients (n = 4 per group) with severe HI were facilitated to discuss their sleep problems after the injury in a group setting. Group discussions lasted ∼45–60 minutes per group until saturation was achieved. Thematic analysis was used to qualitatively explore the beliefs, experiences and expectations associated with sleep disturbances following head injury. Results: Therapists and support staff reported that sleep difficulties are common in HI patients and that in most cases sleep disturbance is related not only to the HI itself but also to mental health or environmental factors. Staff felt that little attention is routinely paid to these problems during rehabilitation unless specifically linked to challenging behaviour. Fatigue was thought to be highly relevant and to have a negative effect on engagement and participation in rehabilitation. Patients thought that sleep problems became persistent after injury and the areas that emerged as being more affected were: mood, cognition, everyday functioning, physical health, concentration and cognition. Most patients reported severe insomnia symptoms associated with worry about life and family during the night. Conclusions: To provide better management and improve their rehabilitation it is essential to understand the therapists’ and patients’ expectations and perceptions of sleep difficulties after head injury. Qualitative analysis shows that sleep difficulties have a significant impact on the cognitive, affective and behavioural difficulties that many patients experience following a head injury.