Gerd Ahlström

Epidemiology of Neuromuscular Diseases, Including the Postpolio Sequelae, in a Swedish County

The epidemiology of neuromuscular diseases was studied in the county of Orebro, Sweden (study population 270,000). Several different sources of data were utilized, compared and validated. On the prevalence of day (January 1, 1988) 474 patients were identified. The rate per 100,000 population was 92 for the postpolio sequelae (PPS) and 84 for the other neuromuscular diseases (motor neuron disease 9, hereditary neuropathies 9, myoneural disorders 16, myotonic disorders 19, muscular dystrophies 20 and myositis 11). Of the patients with the PPS, 80% reported late-onset symptoms. On the basis of an expanded survey including all medical records in one health care district, the prevalence of the PPS was estimated to be 186/100,000 population.

Long-term pain conditions after a stroke.

The aim of this study was to classify and describe the characteristics of different long-term pain conditions after a stroke by clinical examination and pain assessment using the Pain-O-Meter and a Pain questionnaire. Pain was classified as central post-stroke pain (n = 15), nociceptive pain (n = 18), and tension-type headache (n = 10). In 65%, pain onset was within 1-6 months and the pain intensity revealed individual differences. Many pain descriptors was common, some were discriminating as burning in central and cramping in nociceptive pain, and pressing and worrying in headache. More than half with central or nociceptive pain had continuous or almost continuous pain. Cold was the factor mostly increasing the pain in central, physical movements in nociceptive pain, and stress and anxiety in headache. More than one-third had no pain treatment and two-thirds of those with central pain had no or inadequate prescribed pain treatment. The clinical findings support the classification of pain and describe discriminating and common pain characteristics in pain conditions after a stroke.

A family's perspective on living with a highly malignant brain tumor.

The purpose of the study is to describe what it like to live with a highly malignant brain tumor from a family perspective. It is a qualitative study in which 3 families, 3 patients, and 5 next of kin have described their experiences in 15 interviews. The study is prospective, with interviews occurring 2-3 weeks after surgery and 3 and 6 months after the onset of the illness. Inductive content analysis has been employed. The results indicate that when a highly malignant brain tumor is diagnosed, the effect on the family is devastating and there is a state of crisis. Characteristically, there is distancing and a sense of helplessness. The members of the family live from day to day in a state of constant anxiety and fear of losing the patient. The affliction limits the patient’s capacity regarding activities of daily life, which increases the burden of the next of kin. The next of kin attempt to cope with their grief by occupying themselves with practical tasks and activities that they believe are meaningful. The family members have only good words to say about their encounter with healthcare staff and about the information given. Negative information that the family have not asked for can cause a long period of frustration and anxiety, and they believe that their hope has been taken away from them.

Quality of life and impairment in patients with multiple sclerosis

Objectives: The aims of this study were to describe the quality of life in patients with multiple sclerosis (MS) given immunological treatment and in those not given immunological treatment and to investigate the relationship between impairment and quality of life. Methods: Twenty nine patients given immunological treatment were matched with the same number of patients not given such treatment. Matching variables were sex, Kurtzke’s Expanded Disability Status Scale (EDSS), years since diagnosis, and age (total n = 58). The patients were interviewed using the self-reported impairment checklist and they answered two questionnaires on quality of life, the 36-Item Short-Form Health Survey (SF-36) and the Subjective Estimation of Quality of Life (SQoL). Results: The self-reported impairment checklist captured a more differentiated picture of the patients’ symptoms of MS than the EDSS. Health related quality of life was markedly reduced, while the subjective quality of life was less affected. There was a stronger association between self-reported ratings of impairment and health related quality of life on the SF-36 than between impairment and global ratings of quality of life on the SQoL. Subjective quality of life on the SQoL was not directly dependent on impairment expressed in physical limitations. There were no statistically significant differences between the treated and untreated groups. A non-significant trend towards better health related quality of life was found in favour of the treated group with respect to emotional role, physical role, and social function on the SF-36. Conclusions: The self-reported impairment checklist and SF-36 proved to be valuable complements to the well established EDSS in describing the diverse symptoms of MS. Measuring both health related quality of life and subjective wellbeing provides valuable knowledge about the consequences of MS.

The relationship between function, quality of life and coping in patients with low-grade gliomas

ObjectivesThe principal aim of the study was to describe function, quality of life and coping with illness-related problems in patients with low-grade gliomas (LGG), to evaluate the need of support. A second aim was to investigate how function, quality of life and coping were related.Materials and methodsThirty-nine patients with a diagnosis of LGG answered the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC-QLQ-C30) and the Ways of Coping Questionnaire (WCQ). The patients’ level of function was assessed in accordance with the WHO performance status scale.Results and discussionNearly all patients were capable of self-care, but less than half were able to carry out normal activities without restriction. Problems with fatigue, sleep disturbances and pain were most frequent. Most difficulties were reported in the domains, Role, Cognitive and Emotional functioning. Seventeen patients (45%) had scores indicating low overall quality of life. Ratings of overall quality of life and fatigue had the strongest relationship. The trend in the results suggested that mental problems have a stronger impact on quality of life than physical ones. Emotion-focused coping dominated. There was a significant relationship between coping by escape-avoidance and lower level of emotional functioning.ConclusionsThe results of this study indicate that a multidisciplinary team is needed for assessment and treatment of the different problems in patients with LGG. Furthermore, special attention should be paid to patients who use coping by escape-avoidance, as this is associated with emotional distress.

The value of an outdoor powered wheelchair with regard to the quality of life of persons with stroke: a follow-up study.

Evaluating the use of a powered wheelchair is of importance because of the increasing number of people with disabilities who are provided with one. The aim of this study is to describe characteristics of persons with stroke using an outdoor powered wheelchair and to evaluate the impact of the wheelchair on quality of life. A further aim is to compare the impact on quality of life in respect to age, gender, different disability characteristics, and living conditions. The 32 participants with stroke were recruited consecutively from three county council areas in Sweden. A follow-up design was applied including the EuroQol-5D questionnaires at baseline before the persons were prescribed an outdoor powered wheelchair, and after the participants had used the wheelchair for 3 to 5 months, data were collected by means of the EuroQol-5D and the Psychosocial Impact of Assistive Devices Scale (PIADS). The results indicated an improved quality of life with respect to the items competence, independence, capability, quality of life, well-being, happiness, and self-esteem on the PIADS. The usual activity dimension on the EuroQol-5D showed a significant improvement after wheelchair use. The group who drove the powered wheelchair at least once a day in the summer showed a more positive score on the total PIADS and its Competence subscale than persons who drove less. Furthermore, the group with higher rankings of the importance of the powered wheelchair scored higher on psychosocial impact than did the group with lower rankings. The conclusion is that the powered wheelchair mostly has a positive impact on the quality of life of users with stroke. Service providers should be alert, however, to the possible negative impact of a powered wheelchair on quality of life and support the user.

Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years

Purpose: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. Methods: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organizations International Classification of Functioning, Disability and Health (ICF) was used for categorization. Results: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. Conclusions: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.

Disability and quality of life in individuals with postpolio syndrome

Purpose : The purpose of the study is to investigate disability and quality of life in individuals with the characteristic symptoms of postpolio syndrome. Method : Disability is assessed by means of the self-report activities of daily living instrument, and quality of life by means of Kaasas questionnaire and the quality of life profile. Results : The 39 subjects have on average lived with polio sequelae for 52 years. Their main difficulties are with moving, lifting and carrying. This means restricted mobility, sedentary activities and a need to prioritize. Half of them feel that polio has lessened their possibilities in life, and a quarter have still not accepted the limitations polio has involved. Nevertheless the majority report a high level of psychosocial well-being, and almost a quarter say that living with polio has meant personal development and strength. We found a significant correlation between on the one hand disability with regard to ambulation, arm strength and finger strength on the self-report ADL, and on the other hand the number of negative problems on the quality of life profile (0.33-0.45). Conclusion : The latter instrument needs further testing before its validity can be determined with certainty.

Learning a way through ethical problems: Swedish nurses’ and doctors’ experiences from one model of ethics rounds

Objective: To evaluate one ethics rounds model by describing nurses’ and doctors’ experiences of the rounds. Methods: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to promote mutual understanding and stimulate ethical reflection, without giving any recommendations or solutions. Interviews with seven doctors and 11 nurses were conducted regarding their experiences from the rounds, which were then analysed using content analysis. Findings: The goal of the rounds was partly fulfilled. Participants described both positive and negative experiences. Good rounds included stimulation to broadened thinking, a sense of connecting, strengthened confidence to act, insight into moral responsibility and emotional relief. Negative experiences were associated with a sense of unconcern and alienation, as well as frustration with the lack of solutions and a sense of resignation that change is not possible. The findings suggest that the ethics rounds above all met the need of a forum for crossing over professional boundaries. The philosophers seemed to play an important role in structuring and stimulating reasoned arguments. The nurses’ expectation that solutions to the ethical problems would be sought despite explicit instructions to the contrary was conspicuous. Conclusion: When assisting healthcare professionals to learn a way through ethical problems in patient care, a balance should be found between ethical analyses, conflict resolution and problem solving. A model based on the findings is presented.

Unaccompanied young adult refugees in Sweden, experiences of their life situation and well-being : a qualitative follow-up study.

Objective In the late 1980s unaccompanied children began arriving in Sweden. Many of them were teenage boys who had been called up or were at risk of being called up for military service in a war in their home country. Others had fled their homeland for political reasons. The purpose of the study was to describe how unaccompanied young adult refugees experienced their own life situation and well-being seven years after they had gained permanent residency. Design The original sample comprised 34 unaccompanied refugees who at 16–26 years of age were placed in a municipality in Sweden. Eleven of these participated in the present second follow-up study after a mean of 10 years in their new country. Qualitative interviews were conducted and analysed according to Giorgis descriptive phenomenology. Results Most of the participants expressed contentedness with their lives and had begun to adjust to their new country. They had a social network of friends from the same ethnic group, and their Swedish contacts were mostly workmates. A few felt lonely and expressed despondency and depression. They were single and reported a small network and limited social support. One participant described symptoms of post-traumatic stress disorder (PTSD), even after 11 years in the new homeland. Conclusion It appears that most of the participants in the present follow-up study had worked through the problems that typically face refugees and had begun adapting to their new country, while a few still felt lonely and did not feel part of the community. The results may be affected by non-response. Those who dropped out may live with more distress in everyday life and suffer depression more frequently.