Birgitha Archenholtz - Academia.edu (original) (raw)

Papers by Birgitha Archenholtz

Disability and Rehabilitation, Aug 28, 2023

Scandinavian Journal of Occupational Therapy, 2000

PubMed, Jun 1, 1993

We assessed the quality of life and health status of 50 women with systemic lupus erythematosus (... more We assessed the quality of life and health status of 50 women with systemic lupus erythematosus (SLE) and compared them with 50 age matched women with rheumatoid arthritis (RA) using open ended questions, the Quality of Life Scale (QOLS-S), Arthritis Impact Measurement Scales (AIMS), Rheumatology Attitudes Index, and 2 measures of disease activity. The patients with SLE expressed more concerns about their disease and potential for managing it than the patients with RA. However, there were no differences between the groups on the QOLS-S. Both were highly satisfied with many aspects of their lives. The best predictor of life quality in both groups was psychological distress followed by social and physical functioning in the group with RA and perception of global impact of the disease in the group with SLE.

Patients with rheumatic diseases are restrained in their activities of daily living by pain, fati... more Patients with rheumatic diseases are restrained in their activities of daily living by pain, fatigue and decreased mobility and range of motion. Even with equal severity and activity of disease the perceived health status and quality of life may differ. Additional factors such as; age, psychological wellbeing, educational level and the ability to cope with the circumstances influence the quality of life.Aim: The aim of this thesis was to obtain further knowledge about the impact of rheumatic disease on health status and quality of life and to introduce and evaluate measures appropriate for this purpose.Methods: All patients participating in the studies were selected from the register of the Department of Rheumatology, Sahlgrenska University Hospital, Göteborg, Sweden. The different studies involved patients with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and young adults with rheumatic disease onset before (juvenile arthritis) (JA) and after (early adult) (EA) 16 years of age, respectively. The young adult groups were compared to an age and gender matched non-rheumatic group from the general population. The reliability and validity was evaluated in self-administered questionnaires, the Arthritis Impact Measurement Scales (AIMS, AIMS2) and the Quality of Life Scale (QOLS). Comparison of quality of life was made between females with SLE and RA. Predicting factors for quality of life were identified. The qualitative aspects of quality of life were performed by a telephone-interview. The young adults responded to questionnaires regarding health status, quality of life, educational level as well as the impact of arthritis on education and choice of profession. Results: Satisfactory reliability and validity were found for the AIMS2 and the QOLS. We found no evidence for sensitivity to change in AIMS from a short-term hand training program. However, the AIMS2 showed satisfactory sensitivity to change in a long-term outcome study of DMARD treatment. No significant differences were found with regard to quality of life (QOLS) between females with SLE or RA. Both groups were less satisfied with health and physical activities. Predicting factors for quality of life were psychological function and global impact in the AIMS. However, the quality of life interview study revealed that SLE patients appreciated security and control of their situation, whereas females with RA found independence to be most important to their quality of life. Young adults with rheumatic disease onset after 16 years of age (EA) had lower level of education than a reference group from the general population.Conclusions: The Swedish versions of the Arthritis Impact Measurement Scales (AIMS2) and Quality of Life Scale (QOLS) are suitable for self-rating of health status and quality of life in rheumatic diseases. Females with SLE or RA perceive good quality of life but value different domains of it. Rehabilitation of young adults with rheumatic diseases needs to put education and choice of profession in focus at an early phase

Scandinavian Journal of Caring Sciences, Mar 1, 2007

The impact of arthritis on daily life with the patient perspective in focus Background: Rheumatoi... more The impact of arthritis on daily life with the patient perspective in focus Background: Rheumatoid arthritis (RA) often has a major impact on many areas of an individuals' life. The unpredictability of the prognosis as well as the day-today symptoms make it impossible to plan ahead. The aim of this study was to identify the domains of concern in the early course of RA. Methods: Interviews were carried out according to the focus group method. Twenty-three patients with RA, aged between 27 and 67 years and with a disease duration ranging from 1 to 5 years, were included. Four groups were established, the composition of which was based on age, gender and social situation. Results: Arthritis had a major impact on daily life of the patients, especially on the way they performed activities. It also strongly influenced their mood and social life. The participants tried to cope by 'dosing their activities', 'using new strategies' or to 'stretching their limits'. Their sense of helplessness and uncertainty led to both 'anger' and 'depression'. When activities could no longer be maintained, the role positioning in the family also changed. Conclusion: The results of this study support the view that more psychosocial support is required to encourage the recently diagnosed RA patient in the new situation of having a chronic disease.

Scandinavian Journal of Occupational Therapy, May 5, 2017

Background: Distal radius fracture (DRF) often causes reduced ability to perform activities of da... more Background: Distal radius fracture (DRF) often causes reduced ability to perform activities of daily living (ADLs). There is a need for recurrent evaluation of the ability to perform ADL in the early stage of rehabilitation as a complement to traditional functional measures. Aim: Develop a short and simple performance test for use in clinical practice through modification of the Sollerman Grip Function Test (GFT). Method: DRF patients and controls performed the GFT. The tasks that discriminated patients from controls were calculated for sensitivity to change and correlated to the QuickDASH questionnaire at three subsequent occasions. Interrater reliability was tested. Results: Twelve GFT tasks discriminated DRF patients from healthy controls. One task was excluded due to heavy load. Remaining 11 tasks were all sensitive to change. Four tasks with correlation to the QuickDASH and representing the grip types most frequently used in ADL came to constitute the Wrist Performance Test (WPT). A test-retest showed satisfactory interrater reliability (rs ¼ 0.87). Conclusion: A short performance test was developed through modification of the GFT. It is easy to use in clinical practice to evaluate the rehabilitation process after DRF.

Scandinavian Journal of Occupational Therapy, 2008

Aim: This study set out to evaluate the validity and reliability of the instrument Performance an... more Aim: This study set out to evaluate the validity and reliability of the instrument Performance and Satisfaction of Activities of Daily Living (PS-ADL) in patients with rheumatoid arthritis (RA). The PS-ADL is a questionnaire including 39 actions divided into 12 activities measuring the degree of difficulty and satisfaction with activity performance. Method: Construct validity was examined by factor analysis. For convergent and discriminant validity evaluation, the Performance and the Satisfaction scales were correlated to the Health Assessment Questionnaire (HAQ), the Rheumatoid Arthritis Self-Conception (RASC), pain, fatigue, and mobility. Internal consistency was tested and repeated measurements were taken to establish the Percentage Agreement (PA) and correlation coefficients for testÁretest reliability. Results: The factor analysis revealed the PS-ADL scale to be unidimensional. Significant correlations were seen between the Performance and Satisfaction scales and the HAQ (r s 0.78, 0.67), and between the RASC and Satisfaction scale (r s 0.45). Cronbach's alpha level ranged from 0.41 to 0.92 for the Performance scale and 0.66 to 0.94 for the Satisfaction scale. The percentage agreement (PA) at action level ranged from 68% to 91% for the Performance scale and from 59% to 91% for the Satisfaction scale. Conclusion: The PS-ADL is a valid instrument with satisfactory reliability. It is easy to handle and can be recommended for use in RA patients.

Scandinavian Journal of Rheumatology, 2001

An appropriate education may lead to less work disability in patients with arthritis. The aim of ... more An appropriate education may lead to less work disability in patients with arthritis. The aim of the study was to determine the educational level in two groups of young adults with arthritis. Patients with juvenile arthritis ( JA, n=32) and patients with early adult onset of arthritis (EA, n=47) were examined with the Quality of Life Scale (QOLS) and a questionnaire concerning education and profession counselling. Comparisons with a reference group (n=95) from the general population were made. The EA group had lower level of education (p<0.01), compared to the reference group. Among the EA patients, 62% had not discussed their choice of occupation with anybody, compared to 19% in the JA group. The educational level was lower in patients with rheumatic disease starting in early adulthood. Educational issues and counselling should be focused on the care of young adults with arthritis.

British journal of rheumatology, 2005

Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about ben... more Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about benefits from treatments. More knowledge is needed about how patients assess outcomes in order to update current measurements. Methods. Focus group interviews were performed at four Swedish rheumatology clinics. A total of 25 patients with RA were included, representing a wide range of ages and disease duration. Predetermined topics relating to important outcomes from and satisfaction/dissatisfaction with RA treatments were discussed. Results. The participants' initial outcome assessments included physical and psychosocial items, which comprised overall treatment goals such as impairment in social roles, fatigue, daily activities and self-confidence. The identified themes were 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Satisfaction with treatment was associated with the quality of communication between staff and the patient. The participants assumed this as a prerequisite for a treatment to work. Patients wanted to be accepted as experts on their own bodies, and expected all clinicians to be experts on RA. This made it possible for patients to 'take charge' of their life situation. Good resources for and access to rheumatology care were desired. Conclusions. Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have to be evaluated within an individual RA patient's total life situation, described in the identified themes: 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Development and validation of measurements covering these issues is suggested. More research is needed about communication and how patients experience their roles in the rheumatology clinic.

Journal of Musculoskeletal Pain, 1993

Scandinavian Journal of Rheumatology, 1986

A technique for assessing the overall consequences of disease is introduced, comprising a Swedish... more A technique for assessing the overall consequences of disease is introduced, comprising a Swedish version of a behaviour-based measure, the Sickness Impact Profile (SIP). Measurement characteristics of the profile are defined in an epidemiological study of 147 women with rheumatic disorders. The drop-out rate was 7.5%. Cross-cultural evidence of the validity of the SIP was obtained in this study. Test-retest reliability was substantial. A high level of validity of the Swedish version was demonstrated, as assessed by hypothesized significant relationships with selected functional, psychological, and social correlates. The profile was able to describe the various sickness impacts in a specific and sensitive manner. In the epidemiological setting, the subscales representing Ambulation, Body care and movement, Emotional behaviour, Social interaction, Sleep and rest, Home management and Recreation and pastimes, all showed discriminatory capacity. The categories Mobility, Alertness behaviour, Communication, Work, and Eating discriminated less well. The response pattern was recognizably related to rheumatic complaints, emphasizing a broader applicability of this scale in rheumatology.

Scandinavian Journal of Occupational Therapy, 2016

Background: Habits are building blocks for occupation. If they are not explicitly approached, a v... more Background: Habits are building blocks for occupation. If they are not explicitly approached, a vital aspect of occupation may be left out. Knowledge is lacking about how habits are understood and approached in occupational therapy practice. Aim: To explore occupational therapists' perceptions of habits based on their professional experiences. Material and methods: A qualitative design with a focus group methodology was used. The qualitative data analysis was based on five focus group discussions, including 34 occupational therapists. Results: An overarching theme, 'the complexity of habits,' representing the occupational therapists' perception of habits, covers the content of three categories: 'reflecting contradictoriness,' including different forms of ambiguity that characterize habits, 'reflecting identity and security', that emphasize the meaning of habits for identity and structure in everyday life, and 'reflecting context and society', comprising perceptions of habits related to the life situation, time and social patterns and environment. Conclusions: The occupational therapists' perceptions gave a picture of habits as complex systems. Based on the findings, the therapeutic modes used when approaching clients' habits should involve more explicit attention to habits and the inclusion of the client's entire context.

Scandinavian Journal of Rheumatology, 1992

The Quality of Life Scale (QOLS) was translated into Swedish and reliability and validity was stu... more The Quality of Life Scale (QOLS) was translated into Swedish and reliability and validity was studied. The Swedish version (QOLS-S) was given to 100 women with rheumatoid arthritis or systemic lupus erythematosus along with the Arthritis Impact Measurement Scales and a visual analog pain scale. Disease activity was also measured using the Ritchie Articular Index and a patient version of the Systemic Lupus Activity Measure. Results indicated that the QOLS-S had high test-retest reliability (r = .84 for a 4-week interval) and internal consistency reliability (alpha = .82 at Time 1 and .88 at Time 2). An hypothesis that the QOLS-S would have low to moderate correlations with measures of health status and disease activity was supported. We conclude that the QOLS-S is a reliable and valid measure of quality of life in Swedish women with RA and SLE and that it provides a measure of quality of life that is distinct from health status and disease activity.

Scandinavian Journal of Occupational Therapy, 2017

Background: Distal radius fracture (DRF) often causes reduced ability to perform activities of da... more Background: Distal radius fracture (DRF) often causes reduced ability to perform activities of daily living (ADLs). There is a need for recurrent evaluation of the ability to perform ADL in the early stage of rehabilitation as a complement to traditional functional measures. Aim: Develop a short and simple performance test for use in clinical practice through modification of the Sollerman Grip Function Test (GFT). Method: DRF patients and controls performed the GFT. The tasks that discriminated patients from controls were calculated for sensitivity to change and correlated to the QuickDASH questionnaire at three subsequent occasions. Interrater reliability was tested. Results: Twelve GFT tasks discriminated DRF patients from healthy controls. One task was excluded due to heavy load. Remaining 11 tasks were all sensitive to change. Four tasks with correlation to the QuickDASH and representing the grip types most frequently used in ADL came to constitute the Wrist Performance Test (WPT). A test-retest showed satisfactory interrater reliability (rs ¼ 0.87). Conclusion: A short performance test was developed through modification of the GFT. It is easy to use in clinical practice to evaluate the rehabilitation process after DRF.

Patients with rheumatic diseases are restrained in their activities of daily living by pain, fati... more Patients with rheumatic diseases are restrained in their activities of daily living by pain, fatigue and decreased mobility and range of motion. Even with equal severity and activity of disease the perceived health status and quality of life may differ. Additional factors such as; age, psychological wellbeing, educational level and the ability to cope with the circumstances influence the quality of life.Aim: The aim of this thesis was to obtain further knowledge about the impact of rheumatic disease on health status and quality of life and to introduce and evaluate measures appropriate for this purpose.Methods: All patients participating in the studies were selected from the register of the Department of Rheumatology, Sahlgrenska University Hospital, Göteborg, Sweden. The different studies involved patients with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and young adults with rheumatic disease onset before (juvenile arthritis) (JA) and after (early adult) (EA) 16 years of age, respectively. The young adult groups were compared to an age and gender matched non-rheumatic group from the general population. The reliability and validity was evaluated in self-administered questionnaires, the Arthritis Impact Measurement Scales (AIMS, AIMS2) and the Quality of Life Scale (QOLS). Comparison of quality of life was made between females with SLE and RA. Predicting factors for quality of life were identified. The qualitative aspects of quality of life were performed by a telephone-interview. The young adults responded to questionnaires regarding health status, quality of life, educational level as well as the impact of arthritis on education and choice of profession. Results: Satisfactory reliability and validity were found for the AIMS2 and the QOLS. We found no evidence for sensitivity to change in AIMS from a short-term hand training program. However, the AIMS2 showed satisfactory sensitivity to change in a long-term outcome study of DMARD treatment. No significant differences were found with regard to quality of life (QOLS) between females with SLE or RA. Both groups were less satisfied with health and physical activities. Predicting factors for quality of life were psychological function and global impact in the AIMS. However, the quality of life interview study revealed that SLE patients appreciated security and control of their situation, whereas females with RA found independence to be most important to their quality of life. Young adults with rheumatic disease onset after 16 years of age (EA) had lower level of education than a reference group from the general population.Conclusions: The Swedish versions of the Arthritis Impact Measurement Scales (AIMS2) and Quality of Life Scale (QOLS) are suitable for self-rating of health status and quality of life in rheumatic diseases. Females with SLE or RA perceive good quality of life but value different domains of it. Rehabilitation of young adults with rheumatic diseases needs to put education and choice of profession in focus at an early phase

Quality of Life Research

The aim of this study was to increase understanding of the domains of life that are important to ... more The aim of this study was to increase understanding of the domains of life that are important to Swedish women with chronic rheumatic disease and to describe their dissatisfaction with these domains. Fifty women with Systemic Lupus Erythematosus (SLE) and 50 with Rheumatoid Arthritis (RA) were interviewed by telephone regarding their quality of life using five open-ended questions. Content analysis of their responses revealed nine categories: Health/wellness, Family/friends, Work, House/home/living environment, Social support/functional services, Hobbies/cultural activities, Sufficient income, Independence, Integrity/identity. Areas of importance correspond closely to those areas with which they were most dissatisfied. Although the domains identified in both groups were the same, SLE patients expressed more dissatisfaction with their perceived control over their bodies and understanding about their condition on the part of physicians and people in general. RA patients were more diss...

Rheumatology, 2005

Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about ben... more Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about benefits from treatments. More knowledge is needed about how patients assess outcomes in order to update current measurements. Methods. Focus group interviews were performed at four Swedish rheumatology clinics. A total of 25 patients with RA were included, representing a wide range of ages and disease duration. Predetermined topics relating to important outcomes from and satisfaction/dissatisfaction with RA treatments were discussed. Results. The participants' initial outcome assessments included physical and psychosocial items, which comprised overall treatment goals such as impairment in social roles, fatigue, daily activities and self-confidence. The identified themes were 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Satisfaction with treatment was associated with the quality of communication between staff and the patient. The participants assumed this as a prerequisite for a treatment to work. Patients wanted to be accepted as experts on their own bodies, and expected all clinicians to be experts on RA. This made it possible for patients to 'take charge' of their life situation. Good resources for and access to rheumatology care were desired. Conclusions. Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have to be evaluated within an individual RA patient's total life situation, described in the identified themes: 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Development and validation of measurements covering these issues is suggested. More research is needed about communication and how patients experience their roles in the rheumatology clinic.

The Journal of rheumatology, 1997

To evaluate the reliability, validity, and sensitivity of a Swedish version of the Arthritis Impa... more To evaluate the reliability, validity, and sensitivity of a Swedish version of the Arthritis Impact Measurement Scales (AIMS2) in patients with rheumatoid arthritis (RA). Reliability was assessed by a test-retest procedure with a 3-week interval and Cronbach's coefficient of internal consistency. Convergent validity was evaluated by correlation coefficients with the Health Assessment Questionnaire (HAQ), Mood Adjective Checklist (MACL), and disease activity variables. The sensitivity to change was assessed in 40 patients treated with disease modifying antirheumatic drugs, 24 mo after the start of the study. Significant differences were found for the Walking and Bending, Arthritis Pain, and Work scales (p < 0.05) in the test-retest reliability study. Internal consistency coefficients for the AIMS2 scales were 0.68-0.91. Convergent validity was established by significant correlations between the different scales in AIMS2 and the HAQ, MACL, and disease activity variables. Sensit...

Health and quality of life outcomes, Jan 23, 2003

The Quality of Life Scale (QOLS), developed originally by John Flanagan in the 1970's, has be... more The Quality of Life Scale (QOLS), developed originally by John Flanagan in the 1970's, has been adapted for use in chronic illness groups. Evidence for reliability and validity has been published over the years for both English and translations. This paper presents further evidence of construct validity for persons with chronic conditions as well as across two languages, and gender. A sample of 1241 chronically ill and healthy adults from American and Swedish databases was used to generate factor analyses for both the 15-item original QOLS and the 16-item chronic illness adaptation. Analysis of the data suggested that the QOLS has three factors in the healthy sample and across chronic conditions, two languages and gender. Factors that could be labeled (1) Relationships and Material Well-Being, (2) Health and Functioning, and (3) Personal, Social and Community Commitment were identified. The QOLS is a valid instrument for measuring domains of quality of life across diverse patien...

Scandinavian Journal of Rheumatology, 2001

An appropriate education may lead to less work disability in patients with arthritis. The aim of ... more An appropriate education may lead to less work disability in patients with arthritis. The aim of the study was to determine the educational level in two groups of young adults with arthritis. Patients with juvenile arthritis ( JA, n=32) and patients with early adult onset of arthritis (EA, n=47) were examined with the Quality of Life Scale (QOLS) and a questionnaire concerning education and profession counselling. Comparisons with a reference group (n=95) from the general population were made. The EA group had lower level of education (p&lt;0.01), compared to the reference group. Among the EA patients, 62% had not discussed their choice of occupation with anybody, compared to 19% in the JA group. The educational level was lower in patients with rheumatic disease starting in early adulthood. Educational issues and counselling should be focused on the care of young adults with arthritis.

Disability and Rehabilitation, Aug 28, 2023

Scandinavian Journal of Occupational Therapy, 2000

PubMed, Jun 1, 1993

We assessed the quality of life and health status of 50 women with systemic lupus erythematosus (... more We assessed the quality of life and health status of 50 women with systemic lupus erythematosus (SLE) and compared them with 50 age matched women with rheumatoid arthritis (RA) using open ended questions, the Quality of Life Scale (QOLS-S), Arthritis Impact Measurement Scales (AIMS), Rheumatology Attitudes Index, and 2 measures of disease activity. The patients with SLE expressed more concerns about their disease and potential for managing it than the patients with RA. However, there were no differences between the groups on the QOLS-S. Both were highly satisfied with many aspects of their lives. The best predictor of life quality in both groups was psychological distress followed by social and physical functioning in the group with RA and perception of global impact of the disease in the group with SLE.

Patients with rheumatic diseases are restrained in their activities of daily living by pain, fati... more Patients with rheumatic diseases are restrained in their activities of daily living by pain, fatigue and decreased mobility and range of motion. Even with equal severity and activity of disease the perceived health status and quality of life may differ. Additional factors such as; age, psychological wellbeing, educational level and the ability to cope with the circumstances influence the quality of life.Aim: The aim of this thesis was to obtain further knowledge about the impact of rheumatic disease on health status and quality of life and to introduce and evaluate measures appropriate for this purpose.Methods: All patients participating in the studies were selected from the register of the Department of Rheumatology, Sahlgrenska University Hospital, Göteborg, Sweden. The different studies involved patients with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and young adults with rheumatic disease onset before (juvenile arthritis) (JA) and after (early adult) (EA) 16 years of age, respectively. The young adult groups were compared to an age and gender matched non-rheumatic group from the general population. The reliability and validity was evaluated in self-administered questionnaires, the Arthritis Impact Measurement Scales (AIMS, AIMS2) and the Quality of Life Scale (QOLS). Comparison of quality of life was made between females with SLE and RA. Predicting factors for quality of life were identified. The qualitative aspects of quality of life were performed by a telephone-interview. The young adults responded to questionnaires regarding health status, quality of life, educational level as well as the impact of arthritis on education and choice of profession. Results: Satisfactory reliability and validity were found for the AIMS2 and the QOLS. We found no evidence for sensitivity to change in AIMS from a short-term hand training program. However, the AIMS2 showed satisfactory sensitivity to change in a long-term outcome study of DMARD treatment. No significant differences were found with regard to quality of life (QOLS) between females with SLE or RA. Both groups were less satisfied with health and physical activities. Predicting factors for quality of life were psychological function and global impact in the AIMS. However, the quality of life interview study revealed that SLE patients appreciated security and control of their situation, whereas females with RA found independence to be most important to their quality of life. Young adults with rheumatic disease onset after 16 years of age (EA) had lower level of education than a reference group from the general population.Conclusions: The Swedish versions of the Arthritis Impact Measurement Scales (AIMS2) and Quality of Life Scale (QOLS) are suitable for self-rating of health status and quality of life in rheumatic diseases. Females with SLE or RA perceive good quality of life but value different domains of it. Rehabilitation of young adults with rheumatic diseases needs to put education and choice of profession in focus at an early phase

Scandinavian Journal of Caring Sciences, Mar 1, 2007

The impact of arthritis on daily life with the patient perspective in focus Background: Rheumatoi... more The impact of arthritis on daily life with the patient perspective in focus Background: Rheumatoid arthritis (RA) often has a major impact on many areas of an individuals' life. The unpredictability of the prognosis as well as the day-today symptoms make it impossible to plan ahead. The aim of this study was to identify the domains of concern in the early course of RA. Methods: Interviews were carried out according to the focus group method. Twenty-three patients with RA, aged between 27 and 67 years and with a disease duration ranging from 1 to 5 years, were included. Four groups were established, the composition of which was based on age, gender and social situation. Results: Arthritis had a major impact on daily life of the patients, especially on the way they performed activities. It also strongly influenced their mood and social life. The participants tried to cope by 'dosing their activities', 'using new strategies' or to 'stretching their limits'. Their sense of helplessness and uncertainty led to both 'anger' and 'depression'. When activities could no longer be maintained, the role positioning in the family also changed. Conclusion: The results of this study support the view that more psychosocial support is required to encourage the recently diagnosed RA patient in the new situation of having a chronic disease.

Scandinavian Journal of Occupational Therapy, May 5, 2017

Background: Distal radius fracture (DRF) often causes reduced ability to perform activities of da... more Background: Distal radius fracture (DRF) often causes reduced ability to perform activities of daily living (ADLs). There is a need for recurrent evaluation of the ability to perform ADL in the early stage of rehabilitation as a complement to traditional functional measures. Aim: Develop a short and simple performance test for use in clinical practice through modification of the Sollerman Grip Function Test (GFT). Method: DRF patients and controls performed the GFT. The tasks that discriminated patients from controls were calculated for sensitivity to change and correlated to the QuickDASH questionnaire at three subsequent occasions. Interrater reliability was tested. Results: Twelve GFT tasks discriminated DRF patients from healthy controls. One task was excluded due to heavy load. Remaining 11 tasks were all sensitive to change. Four tasks with correlation to the QuickDASH and representing the grip types most frequently used in ADL came to constitute the Wrist Performance Test (WPT). A test-retest showed satisfactory interrater reliability (rs ¼ 0.87). Conclusion: A short performance test was developed through modification of the GFT. It is easy to use in clinical practice to evaluate the rehabilitation process after DRF.

Scandinavian Journal of Occupational Therapy, 2008

Aim: This study set out to evaluate the validity and reliability of the instrument Performance an... more Aim: This study set out to evaluate the validity and reliability of the instrument Performance and Satisfaction of Activities of Daily Living (PS-ADL) in patients with rheumatoid arthritis (RA). The PS-ADL is a questionnaire including 39 actions divided into 12 activities measuring the degree of difficulty and satisfaction with activity performance. Method: Construct validity was examined by factor analysis. For convergent and discriminant validity evaluation, the Performance and the Satisfaction scales were correlated to the Health Assessment Questionnaire (HAQ), the Rheumatoid Arthritis Self-Conception (RASC), pain, fatigue, and mobility. Internal consistency was tested and repeated measurements were taken to establish the Percentage Agreement (PA) and correlation coefficients for testÁretest reliability. Results: The factor analysis revealed the PS-ADL scale to be unidimensional. Significant correlations were seen between the Performance and Satisfaction scales and the HAQ (r s 0.78, 0.67), and between the RASC and Satisfaction scale (r s 0.45). Cronbach's alpha level ranged from 0.41 to 0.92 for the Performance scale and 0.66 to 0.94 for the Satisfaction scale. The percentage agreement (PA) at action level ranged from 68% to 91% for the Performance scale and from 59% to 91% for the Satisfaction scale. Conclusion: The PS-ADL is a valid instrument with satisfactory reliability. It is easy to handle and can be recommended for use in RA patients.

Scandinavian Journal of Rheumatology, 2001

An appropriate education may lead to less work disability in patients with arthritis. The aim of ... more An appropriate education may lead to less work disability in patients with arthritis. The aim of the study was to determine the educational level in two groups of young adults with arthritis. Patients with juvenile arthritis ( JA, n=32) and patients with early adult onset of arthritis (EA, n=47) were examined with the Quality of Life Scale (QOLS) and a questionnaire concerning education and profession counselling. Comparisons with a reference group (n=95) from the general population were made. The EA group had lower level of education (p&lt;0.01), compared to the reference group. Among the EA patients, 62% had not discussed their choice of occupation with anybody, compared to 19% in the JA group. The educational level was lower in patients with rheumatic disease starting in early adulthood. Educational issues and counselling should be focused on the care of young adults with arthritis.

British journal of rheumatology, 2005

Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about ben... more Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about benefits from treatments. More knowledge is needed about how patients assess outcomes in order to update current measurements. Methods. Focus group interviews were performed at four Swedish rheumatology clinics. A total of 25 patients with RA were included, representing a wide range of ages and disease duration. Predetermined topics relating to important outcomes from and satisfaction/dissatisfaction with RA treatments were discussed. Results. The participants' initial outcome assessments included physical and psychosocial items, which comprised overall treatment goals such as impairment in social roles, fatigue, daily activities and self-confidence. The identified themes were 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Satisfaction with treatment was associated with the quality of communication between staff and the patient. The participants assumed this as a prerequisite for a treatment to work. Patients wanted to be accepted as experts on their own bodies, and expected all clinicians to be experts on RA. This made it possible for patients to 'take charge' of their life situation. Good resources for and access to rheumatology care were desired. Conclusions. Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have to be evaluated within an individual RA patient's total life situation, described in the identified themes: 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Development and validation of measurements covering these issues is suggested. More research is needed about communication and how patients experience their roles in the rheumatology clinic.

Journal of Musculoskeletal Pain, 1993

Scandinavian Journal of Rheumatology, 1986

A technique for assessing the overall consequences of disease is introduced, comprising a Swedish... more A technique for assessing the overall consequences of disease is introduced, comprising a Swedish version of a behaviour-based measure, the Sickness Impact Profile (SIP). Measurement characteristics of the profile are defined in an epidemiological study of 147 women with rheumatic disorders. The drop-out rate was 7.5%. Cross-cultural evidence of the validity of the SIP was obtained in this study. Test-retest reliability was substantial. A high level of validity of the Swedish version was demonstrated, as assessed by hypothesized significant relationships with selected functional, psychological, and social correlates. The profile was able to describe the various sickness impacts in a specific and sensitive manner. In the epidemiological setting, the subscales representing Ambulation, Body care and movement, Emotional behaviour, Social interaction, Sleep and rest, Home management and Recreation and pastimes, all showed discriminatory capacity. The categories Mobility, Alertness behaviour, Communication, Work, and Eating discriminated less well. The response pattern was recognizably related to rheumatic complaints, emphasizing a broader applicability of this scale in rheumatology.

Scandinavian Journal of Occupational Therapy, 2016

Background: Habits are building blocks for occupation. If they are not explicitly approached, a v... more Background: Habits are building blocks for occupation. If they are not explicitly approached, a vital aspect of occupation may be left out. Knowledge is lacking about how habits are understood and approached in occupational therapy practice. Aim: To explore occupational therapists' perceptions of habits based on their professional experiences. Material and methods: A qualitative design with a focus group methodology was used. The qualitative data analysis was based on five focus group discussions, including 34 occupational therapists. Results: An overarching theme, 'the complexity of habits,' representing the occupational therapists' perception of habits, covers the content of three categories: 'reflecting contradictoriness,' including different forms of ambiguity that characterize habits, 'reflecting identity and security', that emphasize the meaning of habits for identity and structure in everyday life, and 'reflecting context and society', comprising perceptions of habits related to the life situation, time and social patterns and environment. Conclusions: The occupational therapists' perceptions gave a picture of habits as complex systems. Based on the findings, the therapeutic modes used when approaching clients' habits should involve more explicit attention to habits and the inclusion of the client's entire context.

Scandinavian Journal of Rheumatology, 1992

The Quality of Life Scale (QOLS) was translated into Swedish and reliability and validity was stu... more The Quality of Life Scale (QOLS) was translated into Swedish and reliability and validity was studied. The Swedish version (QOLS-S) was given to 100 women with rheumatoid arthritis or systemic lupus erythematosus along with the Arthritis Impact Measurement Scales and a visual analog pain scale. Disease activity was also measured using the Ritchie Articular Index and a patient version of the Systemic Lupus Activity Measure. Results indicated that the QOLS-S had high test-retest reliability (r = .84 for a 4-week interval) and internal consistency reliability (alpha = .82 at Time 1 and .88 at Time 2). An hypothesis that the QOLS-S would have low to moderate correlations with measures of health status and disease activity was supported. We conclude that the QOLS-S is a reliable and valid measure of quality of life in Swedish women with RA and SLE and that it provides a measure of quality of life that is distinct from health status and disease activity.

Scandinavian Journal of Occupational Therapy, 2017

Background: Distal radius fracture (DRF) often causes reduced ability to perform activities of da... more Background: Distal radius fracture (DRF) often causes reduced ability to perform activities of daily living (ADLs). There is a need for recurrent evaluation of the ability to perform ADL in the early stage of rehabilitation as a complement to traditional functional measures. Aim: Develop a short and simple performance test for use in clinical practice through modification of the Sollerman Grip Function Test (GFT). Method: DRF patients and controls performed the GFT. The tasks that discriminated patients from controls were calculated for sensitivity to change and correlated to the QuickDASH questionnaire at three subsequent occasions. Interrater reliability was tested. Results: Twelve GFT tasks discriminated DRF patients from healthy controls. One task was excluded due to heavy load. Remaining 11 tasks were all sensitive to change. Four tasks with correlation to the QuickDASH and representing the grip types most frequently used in ADL came to constitute the Wrist Performance Test (WPT). A test-retest showed satisfactory interrater reliability (rs ¼ 0.87). Conclusion: A short performance test was developed through modification of the GFT. It is easy to use in clinical practice to evaluate the rehabilitation process after DRF.

Patients with rheumatic diseases are restrained in their activities of daily living by pain, fati... more Patients with rheumatic diseases are restrained in their activities of daily living by pain, fatigue and decreased mobility and range of motion. Even with equal severity and activity of disease the perceived health status and quality of life may differ. Additional factors such as; age, psychological wellbeing, educational level and the ability to cope with the circumstances influence the quality of life.Aim: The aim of this thesis was to obtain further knowledge about the impact of rheumatic disease on health status and quality of life and to introduce and evaluate measures appropriate for this purpose.Methods: All patients participating in the studies were selected from the register of the Department of Rheumatology, Sahlgrenska University Hospital, Göteborg, Sweden. The different studies involved patients with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and young adults with rheumatic disease onset before (juvenile arthritis) (JA) and after (early adult) (EA) 16 years of age, respectively. The young adult groups were compared to an age and gender matched non-rheumatic group from the general population. The reliability and validity was evaluated in self-administered questionnaires, the Arthritis Impact Measurement Scales (AIMS, AIMS2) and the Quality of Life Scale (QOLS). Comparison of quality of life was made between females with SLE and RA. Predicting factors for quality of life were identified. The qualitative aspects of quality of life were performed by a telephone-interview. The young adults responded to questionnaires regarding health status, quality of life, educational level as well as the impact of arthritis on education and choice of profession. Results: Satisfactory reliability and validity were found for the AIMS2 and the QOLS. We found no evidence for sensitivity to change in AIMS from a short-term hand training program. However, the AIMS2 showed satisfactory sensitivity to change in a long-term outcome study of DMARD treatment. No significant differences were found with regard to quality of life (QOLS) between females with SLE or RA. Both groups were less satisfied with health and physical activities. Predicting factors for quality of life were psychological function and global impact in the AIMS. However, the quality of life interview study revealed that SLE patients appreciated security and control of their situation, whereas females with RA found independence to be most important to their quality of life. Young adults with rheumatic disease onset after 16 years of age (EA) had lower level of education than a reference group from the general population.Conclusions: The Swedish versions of the Arthritis Impact Measurement Scales (AIMS2) and Quality of Life Scale (QOLS) are suitable for self-rating of health status and quality of life in rheumatic diseases. Females with SLE or RA perceive good quality of life but value different domains of it. Rehabilitation of young adults with rheumatic diseases needs to put education and choice of profession in focus at an early phase

Quality of Life Research

The aim of this study was to increase understanding of the domains of life that are important to ... more The aim of this study was to increase understanding of the domains of life that are important to Swedish women with chronic rheumatic disease and to describe their dissatisfaction with these domains. Fifty women with Systemic Lupus Erythematosus (SLE) and 50 with Rheumatoid Arthritis (RA) were interviewed by telephone regarding their quality of life using five open-ended questions. Content analysis of their responses revealed nine categories: Health/wellness, Family/friends, Work, House/home/living environment, Social support/functional services, Hobbies/cultural activities, Sufficient income, Independence, Integrity/identity. Areas of importance correspond closely to those areas with which they were most dissatisfied. Although the domains identified in both groups were the same, SLE patients expressed more dissatisfaction with their perceived control over their bodies and understanding about their condition on the part of physicians and people in general. RA patients were more diss...

Rheumatology, 2005

Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about ben... more Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about benefits from treatments. More knowledge is needed about how patients assess outcomes in order to update current measurements. Methods. Focus group interviews were performed at four Swedish rheumatology clinics. A total of 25 patients with RA were included, representing a wide range of ages and disease duration. Predetermined topics relating to important outcomes from and satisfaction/dissatisfaction with RA treatments were discussed. Results. The participants' initial outcome assessments included physical and psychosocial items, which comprised overall treatment goals such as impairment in social roles, fatigue, daily activities and self-confidence. The identified themes were 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Satisfaction with treatment was associated with the quality of communication between staff and the patient. The participants assumed this as a prerequisite for a treatment to work. Patients wanted to be accepted as experts on their own bodies, and expected all clinicians to be experts on RA. This made it possible for patients to 'take charge' of their life situation. Good resources for and access to rheumatology care were desired. Conclusions. Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have to be evaluated within an individual RA patient's total life situation, described in the identified themes: 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Development and validation of measurements covering these issues is suggested. More research is needed about communication and how patients experience their roles in the rheumatology clinic.

The Journal of rheumatology, 1997

To evaluate the reliability, validity, and sensitivity of a Swedish version of the Arthritis Impa... more To evaluate the reliability, validity, and sensitivity of a Swedish version of the Arthritis Impact Measurement Scales (AIMS2) in patients with rheumatoid arthritis (RA). Reliability was assessed by a test-retest procedure with a 3-week interval and Cronbach's coefficient of internal consistency. Convergent validity was evaluated by correlation coefficients with the Health Assessment Questionnaire (HAQ), Mood Adjective Checklist (MACL), and disease activity variables. The sensitivity to change was assessed in 40 patients treated with disease modifying antirheumatic drugs, 24 mo after the start of the study. Significant differences were found for the Walking and Bending, Arthritis Pain, and Work scales (p < 0.05) in the test-retest reliability study. Internal consistency coefficients for the AIMS2 scales were 0.68-0.91. Convergent validity was established by significant correlations between the different scales in AIMS2 and the HAQ, MACL, and disease activity variables. Sensit...

Health and quality of life outcomes, Jan 23, 2003

The Quality of Life Scale (QOLS), developed originally by John Flanagan in the 1970's, has be... more The Quality of Life Scale (QOLS), developed originally by John Flanagan in the 1970's, has been adapted for use in chronic illness groups. Evidence for reliability and validity has been published over the years for both English and translations. This paper presents further evidence of construct validity for persons with chronic conditions as well as across two languages, and gender. A sample of 1241 chronically ill and healthy adults from American and Swedish databases was used to generate factor analyses for both the 15-item original QOLS and the 16-item chronic illness adaptation. Analysis of the data suggested that the QOLS has three factors in the healthy sample and across chronic conditions, two languages and gender. Factors that could be labeled (1) Relationships and Material Well-Being, (2) Health and Functioning, and (3) Personal, Social and Community Commitment were identified. The QOLS is a valid instrument for measuring domains of quality of life across diverse patien...

Scandinavian Journal of Rheumatology, 2001

An appropriate education may lead to less work disability in patients with arthritis. The aim of ... more An appropriate education may lead to less work disability in patients with arthritis. The aim of the study was to determine the educational level in two groups of young adults with arthritis. Patients with juvenile arthritis ( JA, n=32) and patients with early adult onset of arthritis (EA, n=47) were examined with the Quality of Life Scale (QOLS) and a questionnaire concerning education and profession counselling. Comparisons with a reference group (n=95) from the general population were made. The EA group had lower level of education (p&lt;0.01), compared to the reference group. Among the EA patients, 62% had not discussed their choice of occupation with anybody, compared to 19% in the JA group. The educational level was lower in patients with rheumatic disease starting in early adulthood. Educational issues and counselling should be focused on the care of young adults with arthritis.