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Background: Among individuals diagnosed with the chronic neurologic disease, multiple sclerosis (MS), a majority suffers from fatigue, which strongly influences their every-day-life. The aim of this study was to investigate work capacity and health-related quality of life (HRQoL) in a group of MS patients and also to investigate if work capacity and HRQoL could be predicted by background factors, fatigue, heat sensitivity, cognitive dysfunction, emotional distress or degree of disability., Methods: A descriptive, cross-sectional, designed survey was undertaken A questionnaire was sent to 323 individuals diagnosed with MS, aged between 20 and 65 years, with physical disability on the expanded disability status score (EDSS) in the interval 0 ≥ EDSS ≤ 6.5, living in Östergötland county in eastern Sweden. Questions on background factors, occupation and work, together with the health-related quality of life short form instrument (SF-36), the fatigue severity scale (FSS), the perceived deficit questionnaire (PDQ) and the hospital anxiety depression scale (HAD) were posed. Associations between variables were analyzed using Pearson's and Spearman's correlations. Differences between groups were tested using the Chi-square test, the Mann Whitney U-test, and the Student's t-test. Predictive factors were analyzed using multiple linear and multiple logistic regression analysis., Results: Of those who completed the questionnaire (n = 257, 79.6%), 59.8% were working. Work capacity was found significantly more among men (p < 0.005), those with a higher level of education (p < 0.001), those reporting less fatigue (p < 0.001), and those having no heat sensitivity (p = 0.004). For work capacity, significant predictors were low physical disability (EDSS), low fatigue, higher level of education, male sex and lower age. Those with work capacity showed significantly higher HRQoL than those who had no work capacity (p < 0.001). Levels of fatigue, cognition and emotional distress were found to be major contributing factors for HRQoL., Conclusions: Work capacity and HRQoL among individuals diagnosed with MS are highly influenced by fatigue which can be considered as a key symptom. Work capacity was influenced by heat-sensitivity, cognitive difficulties and emotional distress and significant predictive factors besides fatigue, were physical disability (EDSS), age, sex, and level of education. Remaining at work also gives a better HRQoL.

Purpose: The aim in the present study was to establish underlying dimensions of quality of life in Sweden, measured by QLI, and to obtain reference values among a representative sample between 18 and 80 years of age from the general Swedish population., Method: A total of 1,680 randomly selected persons completed the questionnaire (57% response rate). All data were coded and entered into the statistical software. Factor analysis, maximum-likelihood method with oblique rotation, was employed to explore and reveal underlying dimensions of the QLI. To describe QLI total and subscale reference values for different age groups and men and women, respectively, means and 95% CI as well as medians and quartiles were used. For comparisons related to demographic and background variables, parametric and non-parametric analyses were used (alpha=0.01). All data were analysed using SPSS 14.0 statistical software., Results: Four underlying dimensions emerged: Family and friends, Health and functioning, Social and economic and Psychological/spiritual. Mean values for the total QLI and the four subscales ranged between 17.2 and 23.7 (possible range=0.0-30.0)., Conclusions: The overall QLI and subscale scores correspond with those presented by other researchers. Population-based measures of generic quality of life and underlying dimensions are important considering the gain when results from specific patient groups are viewed.

Crohn disease is a chronic inflammatory bowel disease of unknown etiology. The chronic, relapsing nature of Crohn disease produces physical, psychological, and social stress. The disease occurs early in life, and the effects of Crohn disease on daily life are associated with symptom burden; thus, managing their disease and coping with its impact is a lifelong process for sufferers. This study was undertaken to identify and describe the meaning of quality of life in patients with Crohn disease. Using a grounded theory methodology, 11 interviews were performed with 6 men and 5 women, 29-83 years of age, all suffering from Crohn disease. The experience of quality of life was associated with limitations in daily activity, the major theme that emerged from the analysis. Quality of life varied depending on how the patient managed limitations related to the symptoms of the disease. The categories of self-image, confirmatory relations, powerlessness, attitude toward life, and sense of well-being were conceptualized as the dominant themes derived from the data. When caring for these patients, it is important to identify limitations and provide support so that patients are able to maintain a daily life that can be perceived as normal and routine.

Background: The negative impact of vertebral and hip low-energy fractures on health-related quality-of-life (HRQOL) has been demonstrated previously, but few prospective long-term follow-up studies have been conducted. This study aims to (i) investigate the changes and long-term impact of vertebral or hip fracture and between fracture groups on HRQOL in postmenopausal women prospectively between two and seven years after the inclusion fracture, (ii) compare HRQOL results between fracture and reference groups and (iii) study the relationship between HRQOL and physical performance, spinal deformity index and bone mineral density at seven-year follow-up., Methods: Ninety-one women examined two years after a low-energy vertebral or hip fracture were invited to a new examination seven years after the diagnosis. HRQOL was examined using the SF-36 questionnaire and was compared with an age and sex-matched reference group. Physical function was assessed using tests and questionnaires. Bone mineral density was measured. Radiographs of the spine were evaluated using the visual semiquantitative technique. A longitudinal and cross-sectional design was used in this study. Statistical analyses included descriptive statistics, Student's t-tests, ANCOVA, and partial correlation., Results: Sixty-seven women participated. In the 42 women (mean age 75.8, SD 4.7) with vertebral fracture as inclusion fracture, bodily pain had deteriorated between two and seven years and might be explained by new fracture. Remaining pronounced reduction of HRQOL was seen in all domains except general health and mental health at seven-year follow-up in women with vertebral fractures compared to the reference group (p < 0.05). All 25 women (mean age 75.0, SD 4.7) with hip fracture as inclusion fracture had no significant changes in HRQOL between two and seven years and did not differ from the reference group regarding HRQOL after seven years. The vertebral group had significantly lower values for bodily pain, vitality, role-emotional function and mental health compared to the hip group. HRQOL showed a positive relationship between physical activity, static balance and handgrip strength., Conclusion: The long-term reduction of HRQOL in women with vertebral fracture emerged clearly in this study. The relationships between HRQOL and physical performance in women with vertebral and hip fracture raise questions for more research.

Background: Since the late 1950s, several studies have reported the burden faced by families living with a mentally ill relative. These studies have pointed out the importance of a progressive mental health service, focusing not only on the treatment of the patients, but also on the needs of the relatives. The aims of the present study were to compare the quality of life of parents of outpatients with schizophrenia with a randomly selected reference group and the relation between quality of life and burden on the parents., Subjects: The sample comprised all parents (n=38) of outpatients with schizophrenia at an outpatient clinic in 2001, where the patients had contact at least once a week with both parents and staff. The parents were compared with a reference group (n=698)., Methods: The self-rating scale Quality of Life Index (QLI) was used to assess quality of life in both groups. In the case of the parents, semistructured interviews were supplemented by the data collection to assess the degree of burden with the Burden Assessment Scale (BAS). The outpatients were also interviewed to assess their global function with the Global Assessment of Functioning scale (GAF) and the Clinical Global Impression scale (CGI)., Results: The parents were significantly less satisfied with their overall quality of life (p<0.05). There was a correlation between lower overall quality of life and higher perceived burden r=0.58 (p<0.01). There was also a correlation between lower values on the family subscale and social subscale within the QLI and higher subjective burden r=0.54 (p<0.01) and r=0.52 (p<0.01), respectively., Conclusion: These results indicate that caregiving has an influence on the family situation and on the quality of life of parents. These findings suggest that the professions working with the parents must have an approach focusing not only on the care given to the ill daughter or son, but also on the parents' situation.

Background: Living with a genetic predisposition to disease may influence quality of life. The presence of premature disease can lead to an increased focus on family history and genetic predisposition., Objective: The purpose of this study was to describe quality of life in patients with the genetic disease, familial hypercholesterolemia, who are at an increased risk of premature coronary heart disease., Methods: Interviews from 12 adult patients with FH were analyzed using constant comparative analysis. The findings of this qualitative study revealed that for patients, quality of life was equated with harmony in life, the core category. Attaining harmony in life presumes satisfaction and togetherness. Cognizance of the threat of coronary heart disease and impending mortality is balanced by the support of togetherness and satisfaction that builds harmony in life., Conclusion: When caring for patients with familial hypercholesterolemia, it is important to meet each patient on his or her own level, and to support balance and their choices for maintaining or regaining harmony in life.

Background: No study has, to our knowledge, previously been published on health-related quality of life (HRQoL) in a group suffering from long-term pain after a stroke., Aim: The aim of the present study was to describe HRQoL in persons with long-term pain after a stroke, and to compare this with different types of pain conditions, age, gender and household status., Design: This study has a design combining qualitative and quantitative methods., Methods: Forty three participants suffering from long-term pain after a stroke were included. A qualitative interview was performed and then analysed by means of latent content analysis. In addition, two self-report questionnaires, SF-36 and the Hospital Anxiety and Depression Scale (HAD Scale), were used., Results: The qualitative data revealed that physical and cognitive functioning, economic security and good relationships, support and having the ability to be together with family and friends were important factors with regard to experienced HRQoL. No significant differences were found in SF-36 and the HAD Scale with regard to the different types of pain. The older age group had decreased physical functioning in SF-36. The men had more decreased vitality than the women., Conclusion: The results show, that the participants in this study have a lower HRQoL due to their long-term pain than those in previous studies on stroke survivors. It is evident that further research is needed with longitudinal studies and larger populations to gain more knowledge and thereby provide better supportive care., Relevance to Clinical Practice: Awareness and understanding of the patients' perceptions and transitions with regard to their life situation and suffering from long-term pain after a stroke is important in order to support a maintained or increased HRQoL. This is also important after the acute stage and rehabilitation, including quality of life of the relatives, especially to older and dependent persons.

Background: Awareness of genetic disease in the family may influence quality of life. The purpose of this study was to describe quality of life among nonaffected members of families with familial hypercholesterolaemia. All were aware of the risk for coronary heart disease. Their quality of life was compared with a reference group and with the patients with familial hypercholesterolaemia themselves., Methods: Names of family members (n = 129) were given by the patients with familial hypercholesterolaemia. A randomly selected reference group (n = 1485) and patients with familial hypercholesterolaemia (n = 185) were included for comparison. They all completed the questionnaire Quality of Life Index, the Hospital Anxiety and Depression Scale, and the Mastery Scale measuring coping. Family members and patients with familial hypercholesterolaemia also completed a questionnaire on health and lipids., Results: Family members were more satisfied with family life, mean 22.1 +/- 3.5 (SD), and psychological/spiritual life, 22.9 +/- 4.0, than the reference group, 21.4 +/- 4.3 and 21.1 +/- 4.8, respectively; this was particularly expressed among partners, P < 0.05. Of family members, 91% were anxious about the patient with familial hypercholesterolaemia developing coronary heart disease., Conclusions: Family members have as good a quality of life as members of the reference group, but they were anxious about the patient with familial hypercholesterolaemia developing coronary heart disease.

Objectives: The primary aim of this study was to analyse quality of life in adult patients with familial hypercholesterolaemia (FH), a genetic disorder with increased risk of coronary heart disease (CHD). Secondary aims were to find explanatory factors for quality of life and anxiety., Design: A descriptive cross-sectional design was used., Setting: Outpatients from lipid clinics at two university hospitals in Sweden were included. Patients with heterozygous FH and a randomly selected control group participated by filling out questionnaires., Subjects: Two hundred and eighty patients with heterozygous FH above 18 years of age were asked, and 212 of whom 185 were free of overt CHD, participated. Of a control group of 2980 persons 1485 were included for comparison., Methods: We used Likert-type questionnaires: the Quality of Life Index (QLI) consisting of four subscales, the Hospital Anxiety and Depression Scale (HAD), the Mastery Scale measuring coping and a questionnaire on health and lipids constructed for FH patients., Results: Patients with FH were significantly more satisfied with overall quality of life 21.8 +/- 0.3 (SEM) vs. controls 21.1 +/- 0.1 and this was also the case in three of four subscales, all differences P < 0.05. Anxiety about getting CHD was expressed amongst 86% of the patients with FH., Conclusions: Quality of life amongst patients with FH was at least as good as in controls but they were worried about getting CHD.

The majority of elderly patients with leg ulcers live at home and receive treatment for their ulcers within the primary health care system. Little is known about the patients' ability or behaviour in the life situation and how well they manage their daily life at home. The Philadelphia Geriatric Center Multilevel Assessment Instrument (PGC MAI) was used to assess and compare the life situation in 70 patients (mean age 79 +/- 6.5 years) with leg ulcers and in 74 elderly persons (mean age 80 +/- 5.7 years) without leg ulcers. The patients with leg ulcers had significantly lower mean values in the domains of physical health, activity of daily living (ADL), cognition, time use and social behaviour, personal adjustment and environmental quality than those without ulcers. Sixty-three percent of the patients reported ulcer-related pain, and all of them were dependent on health care personnel for dressing changes. This may indicate that the life situation among elderly persons with leg ulcers is not so good as compared with that of elderly persons without ulcers and that patients with leg ulcers are more vulnerable than elderly people of the same age.

There is a need to understand and explain why quality of life (QOL) is experienced and viewed differently by those with acute and chronic leukemia. A total of 23 adults with either acute or chronic leukemia were interviewed about their experience of QOL. Adults with acute leukemia described QOL as a positive attitude to life, whereas those with chronic leukemia described QOL as life satisfaction. In order to elucidate why there are differences in their experience of QOL, a qualitative text analysis was used. The narrated interviews, tape-recorded and transcribed verbatim, were interpreted based on the following three questions: Why are there differences in these individuals' description of QOL? What are they talking about? Which phenomenon are they describing? The findings were interpreted, "a feeling of uncertainty," which made the difference to their experience of QOL. This uncertainty was expressed in different forms and could be seen in different degrees. Uncertainty is an important factor affecting the QOL of these adults. Nurses who work with these patients have a major role to play in minimizing uncertainty by offering coping skills to deal with feelings and improving QOL since QOL is one of the outcomes of nursing care.

The person with chronic leukaemia is living with a chronic and life-threatening disease. The aims of this study were to gain a deeper understanding of what individuals with chronic leukaemia consider QOL to be and to give the concept of QOL a theoretical and empirical significance relevant to nursing care. Fifteen adults with different forms of diagnosed chronic leukaemia have been interviewed about their experience of QOL. Verbatim transcripts were analysed using constant comparative analysis. The emerging core category was life satisfaction. Under this construct there were four categories; self-esteem, interpersonal relationships, performance ability and social ability. Changed QOL was described in two ways. First, coping was the core category for living with chronic leukaemia. The strategies were action, denial and hope. Second, QOL was seen as individual perception, experience of a positive attitude to life and self-contemplation.

The cause of acute leukaemia is unknown. Untreated, the disease is generally fatal after a few months. The therapeutic regimen is chemotherapy, and sometimes also bone marrow transplantation, and the aim is to cure the patient. Not only does the person live under pressure from a life-threatening disease with all the physiological complications that therapy can result in, the therapeutic regimen also involves a great psychological effect. The concept of quality of life (QOL) is individual for each person, as is his/her experience of the value of the contents of life. The principal aim of the study was to describe what QOL means to adults with acute leukaemia, not to describe the degree of QOL. The second aim was to give the concept of QOL a theoretical and empirical significance relevant to nursing care. Eight adults with diagnosed acute leukaemia detected in adulthood have been interviewed about their quality of life. The concept was given one superior dimension in all the interviews; positive attitude to life. Below the superior dimension were two further dimensions; interpersonal relationships and autonomy. Different qualities were given below these dimensions, viz. security, support, respect, information and conversation.

The purpose of this paper is to describe the life situation, the frequency of sick-listing and the work situation of people with ulcerative colitis and Crohn's disease who have undergone an ileostomy. The survey which was undertaken in Sweden included 53 people between the ages of 17 and 65 who had had their ileostomy for between 6 months and 25 years. Personal interviews were carried out and information about the operation and complications was acquired from the medical records. Half of the respondents felt themselves handicapped to some extent. Despite this, most of them did not consider their daily activities to be adversely affected by the sickness/ileostomy. There were, however, individual variations depending on the sickness, how well the ileostomy worked and other factors affecting the individual's situation. Twenty-two had been off sick once or several times during the previous 2 years; nine of them had been sick-listed over a longer period. Most of them stated that their working capacity had not been affected by the operation/sickness, while 10 of them had some form of disability pension or part-time work. A positive reaction noted was that when the sickness no longer steered one's life, it became easier to plan both work and leisure time.