Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance: a Swedish national register study.

BACKGROUND: Specific medical guidelines for health surveillance exist for people with Down syndrome (DS) since 25 years but knowledge of adherence to the guidelines is lacking. The guidelines were developed to avoid unnecessary suffering from preventable conditions. The aims of the study were to investigate 1) planned health care visits in relation to the co-morbidities described in specific medical guidelines as a measure of adherence, 2) unplanned health care visits as a measure of potentially unmet health care needs and 3) gender differences in health care utilisation among older people with DS. METHODS: This register-based study includes people with DS (n = 472) from a Swedish national cohort of people with intellectual disability (n = 7936), aged 55 years or more, and with at least one support according to the disability law, in 2012. Data on inpatient and outpatient specialist health care utilisation were collected from the National Patient Register for 2002-2012. RESULTS: A total of 3854 inpatient and outpatient specialist health care visits were recorded during the 11 years, of which 54.6% (n = 2103) were planned, 44.0% (n = 1695) unplanned and 1.4% (n = 56) lacked information. More than half of the visits, 67.0% (n = 2582) were outpatient health care thus inpatient 33% (n = 1272). Most planned visits (29.4%, n = 618) were to an ophthalmology clinic, and most unplanned visits to an internal medicine clinic (36.6%, n = 621). The most common cause for planned visits was cataract, found at least once for 32.8% in this cohort, followed by arthrosis (8.9%), epilepsy (8.9%) and dementia (6.6%). Pneumonia, pain, fractures and epilepsy each accounted for at least one unplanned visit for approximately one-fourth of the population (27.1, 26.9, 26.3 and 19.7% respectively). Men and women had similar numbers of unplanned visits. However, women were more likely to have visits for epilepsy or fractures, and men more likely for pneumonia. CONCLUSIONS: Increased awareness of existing specific medical guidelines for people with DS is vital for preventive measures. The relatively few planned health care visits according to the medical guidelines together with a high number of unplanned visits caused by conditions which potentially can be prevented suggest a need of improved adherence to medical guidelines.

Cancer diagnoses among older people with intellectual disability compared with the general population: a national register study.

BACKGROUND: Cancer occurrence among older people with intellectual disability (ID) is poorly documented, so we investigated the frequency and distribution of cancer in older people with ID compared with the general population. METHOD: People with ID who were ≥55years old and alive at the end of 2012 (n = 7936; ID cohort) were identified through a national register of people with ID who received social services in Sweden to optimise the individual's opportunity for good living conditions in daily life. An equally large reference cohort from the general population (gPop cohort) was matched by year of birth and sex. Cancer diagnoses registered in inpatient and outpatient specialist care were collected for 2002-2012 from the ID cohort and compared with diagnoses in the gPop cohort. RESULTS: A lower total cancer frequency was observed in the ID cohort, which contained 555 cancers, compared with 877 cancers in the gPop cohort [odds ratio (OR): 0.63; 95% confidence interval (CI): 0.57-0.70]. Women accounted for 60% of cancers in the ID cohort. Breast and gynaecological organ cancers had similar or slightly lower frequencies in the ID cohort than in the general population, with breast OR of 0.95, uterine corpus OR of 1.00 and ovary OR of 0.73. Surprisingly, cancer frequency of the digestive organs (OR: 0.67), including the colon (OR: 0.82), was lower than in the general population. Cancers of the prostate (OR: 0.25), urinary tract (OR: 0.42) and lung were less frequent than in the general population. CONCLUSIONS: Cancer was diagnosed less frequently in the ID cohort than in the gPop cohort. However, cancers of the breast and colon-rectum remain frequent in people with ID and therefore warrant prevention policies, monitoring and screening similar to those of the general population.

Specialist psychiatric health care utilization among older people with intellectual disability - predictors and comparisons with the general population: a national register study.

BACKGROUND: People with intellectual disability (ID) face considerable barriers to accessing psychiatric health care, thus there is a risk for health disparity. The aims of the present study were 1) to compare specialist psychiatric health care utilization among older people with ID to that with their age peers in the general population, taking into account demographic factors and co-morbidities associated with specialist psychiatric health care utilization and 2) to determine a model for prediction of specialist psychiatric health care utilization among older people with ID. MATERIAL AND METHODS: We identified a national cohort of people with ID (ID cohort), aged 55+ years and alive at the end of 2012 (n = 7936), and a referent cohort from the general population (gPop cohort) one-to-one matched by year of birth and sex. Data on utilization of inpatient and outpatient specialist psychiatric health care, as well as on co-morbidities identified in either psychiatric or somatic specialist health care, were collected from the National Patient Register for the time period 2002-2012. RESULTS: After adjusting for sex, age, specialist psychiatric health care utilization the previous year, and co-morbidities, people in the ID cohort still had an increased risk of visits to unplanned inpatient (relative risk [RR] 1.95), unplanned outpatient (RR 1.59), planned inpatient (RR 2.02), and planned outpatient (RR 1.93) specialist psychiatric health care compared with the general population. Within the ID cohort, increasing age was a predictor for less health care, whereas psychiatric health care the previous year predicted increased risk of health care utilization the current year. As expected, mental and behavioral disorders predicted increased risk for psychiatric health care. Furthermore, episodic and paroxysmal disorders increased the risk of planned psychiatric health care. CONCLUSIONS: Older people with ID have a high need for psychiatric specialist health care due to a complex pattern of diagnoses. Further research needs to investigate the conditions that can explain the lesser psychiatric care in higher age groups. There is also a need of research on health care utilization among people with ID in the primary health care context. This knowledge is critical for policymakers' plans of resources to meet the needs of these people.

End-of-life care among older cancer patients with intellectual disability in comparison with the general population: a national register study.

BACKGROUND: Increasing life expectancy for people with an intellectual disability (ID) is resulting in more persons with cancer and a greater need for end-of-life (EoL) care. There is a need for knowledge of health care utilisation over the last year of life to plan for resources that support a high quality of care for cancer patients with ID. Therefore, the aims of the study were to compare (1) health care utilisation during the last year of life among cancer patients with ID and cancer patients without ID and (2) the place of death in these two groups. METHODS: The populations were defined using national data from the period 2002-2015, one with ID (n = 15 319) and one matched 5:1 from the general population (n = 72 511). Cancer was identified in the Cause of Death Register, resulting in two study cohorts with 775 cancer patients with ID (ID cohort) and 2968 cancer patients from the general population (gPop cohort). RESULTS: Cancer patients with ID were less likely than those without ID to have at least one visit in specialist inpatient (relative risk 0.90, 95% confidence interval 0.87-0.93) and outpatient (0.88, 0.85-0.91) health care, during their last year of life. Those with ID were more likely to have no or fewer return visits than the patients in the gPop cohort (5 vs. 11, P < 0.001), also when stratifying on sex and median age at death. Most cancer patients with ID died in group homes or in their own homes and fewer in hospital (31%) as compared with cancer patients in the gPop cohort (55%, 0.57, 0.51-0.64). CONCLUSIONS: Older cancer patients with ID were less likely to be assessed or treated by a specialist. This may suggest that people with ID have unaddressed or untreated distressing symptoms, which strongly contributes to a decreased quality of EoL care and a poor quality of life. There is a need to acquire further knowledge of the EoL care and to focus on adapting and evaluating quality indicators for older cancer patients with ID.

Hospital readmissions among older people with intellectual disability in comparison with the general population.

BACKGROUND: Older people with intellectual disability have high multimorbidity and poor physical and mental health compared with the general population. Consequently, they have a greater need for health care. Hospital readmissions may be an indicator of the quality of health care. However, so far, only a few studies have investigated this outcome in populations of people with intellectual disability. None has focused on older people. METHOD: We identified a cohort of people with intellectual disability aged 55+ years and alive at the end of 2012 (n = 7936). Moreover, we established a reference cohort from the general population, one-to-one matched by sex and year of birth. Data on hospital visits during the period 2002-2012 were collected from the Swedish National Patient Register. Readmissions were defined as unplanned visits with the same diagnosis occurring within 30 days of discharge and with no planned visit for the same diagnosis during this time. RESULTS: Compared with the general population, people with intellectual disability had increased risk of readmissions for diseases of the nervous system [relative risk (RR) 2.62], respiratory system (RR 1.48), digestive system (RR 1.40) and musculoskeletal system and connective tissue (RR 2.10). Within these diagnostic groups, increased risks were found for arthropathies (RR 3.73), disorders of gallbladder, biliary tract and pancreas (RR 1.78), other diseases of intestines (RR 1.30), and other forms of heart disease (RR 1.23). Decreased risk of readmissions was found for mental and behavioural disorders (RR 0.78) and diseases of the circulatory system (RR 0.64). CONCLUSIONS: The increased risk for readmissions related to diseases of the nervous and musculoskeletal systems has a clear relation to the prevalence of comorbidities in these areas. People with intellectual disability often also have inborn limitations and damages in these systems which with time lead to complications and risk for diseases, which can be difficult to discover. The increased risk for readmissions for disease of the respiratory system, together with the already known increased prevalence of such diagnoses and their occurrence as a cause for death, warrants further investigations and considerations of potential preventive measures. The pattern of readmissions among older people with intellectual disability cannot be explained solely by a higher prevalence of disorders in this group. Our finding of increased risks for readmissions for diseases in the digestive system could be interpreted as communication problems, which sometimes result in too rapid discharges and their consequential early readmissions.

Falls resulting in health care among older people with intellectual disability in comparison with the general population.

BACKGROUND: Falls are common among older people with intellectual disability (ID) and are also a major contributor to injuries in this population. Yet, fall characteristics have only been sparsely studied, and the results are inconsistent. The aim of the present study was to investigate type of falls, places where they occurred and activities that caused them, as well as health outcomes and health utilisation patterns after falls, among older people with ID in comparison with their age peers in the general population. METHODS: We established an administrative cohort of people with ID aged 55 years, or more, and alive at the end of 2012 (ID cohort; n = 7936). A cohort from the general population, one-to-one matched by sex and year of birth, was used as referents. Data regarding fall-induced health care episodes in inpatient and outpatient specialist care were collected from the National Patient Register for the period 2002-2012. RESULTS: With the exception of falls from one level to another (i.e. fall on and from stairs and steps, ladder and scaffolding; fall from, out of or through building or structure; fall from tree or cliff and diving or jumping into water; or other fall from one level to another), people in the ID cohort were more likely to fall and fall more often than those in the general population cohort. Falls during a vital activity (e.g. attending to personal hygiene or eating) were twice as common among people with ID compared with the general population. When falling, people with ID were more likely to injure their head and legs but less likely to sustain injuries to the thorax and elbow/forearm. They were more likely to have superficial injuries, open wounds and fractures but less likely to have dislocations, sprain and strains. Fall-related health care visits among people with ID were more likely to be in inpatient care and be unplanned. People with ID were also more likely than those in the general population to have a readmission within 30 days. CONCLUSIONS: People with ID are more likely to require specialist care after a fall and also more likely to obtain injuries to the head, compared with the general population. This is important to consider when taking preventive measures to reduce falls and fall-related injuries.

Psychiatric diagnoses in older people with intellectual disability in comparison with the general population: a register study.

AIMS: To describe the occurrence of psychiatric diagnoses in a specialist care setting in older people with intellectual disability (ID) in relation to those found in the same age group in the general population. METHOD: A cohort of people with ID (n = 7936), aged 55 years or more in 2012, was identified, as was an age and sex-matched cohort from the general population (n = 7936). Information regarding psychiatric diagnoses during 2002-2012 was collected from the National Patient Register, which contains records from all inpatient care episodes and outpatient specialist visits in Sweden. The mean age at the start of data collection (i.e. January 1st, 2002) was 53 years (range 44-85 years). RESULTS: Seventeen per cent (n = 1382) of the people in the ID cohort had at least one psychiatric diagnosis recorded during the study period. The corresponding number in the general population cohort was 10% (n = 817), which translates to an odds ratio (OR) of 1.84. The diagnoses recorded for the largest number of people in the ID cohort were 'other' (i.e. not included in any of the diagnostic groups) psychiatric diagnoses (10% of the cohort had at least one such diagnosis recorded) and affective disorders (7%). In the general population cohort, the most common diagnoses were affective disorders (4%) and alcohol/substance-abuse-related disorders (4%). An increased odds of having at least one diagnosis was found for all investigated diagnoses except for alcohol/substance-abuse-related disorders (OR = 0.56). The highest odds for the ID cohort was found for diagnosis of psychotic disorder (OR = 10.4) followed by attention deficit/hyperactive disorder (OR = 3.81), dementia (OR = 2.71), personality disorder (OR = 2.67), affective disorder (OR = 1.74) and anxiety disorder (OR = 1.36). People with ID also had an increased odds of psychiatric diagnoses not included in any of these groups (OR = 8.02). The percentage of people with ID who had at least one diagnosis recorded during the study period decreased from more than 30% among those aged 55-59 years in 2012 (i.e. born 1953-1957) to approximately 20% among those aged 75+ years in 2012 (i.e. born in or before 1937). CONCLUSIONS: Older people with ID seem to be more likely to have psychiatric diagnoses in inpatient or outpatient specialist care than their peers in the general population. If this is an effect of different disorder prevalence, diagnostic difficulties or differences in health care availability remains unknown. More research is needed to understand the diagnostic and treatment challenges of psychiatric disorders in this vulnerable group.

Psychiatric diagnoses in relation to severity of intellectual disability and challenging behaviors: a register study among older people.

OBJECTIVE: To investigate the possible association between severity of intellectual disability (ID) and presence of challenging behavior, respectively, on diagnoses of psychiatric disorders among older people with ID. METHODS: People with a diagnosis of ID in inpatient or specialist outpatient care in 2002-2012 were identified (n = 2147; 611 with mild ID, 285 with moderate ID, 255 with severe or profound ID, and 996 with other/unspecified ID). Moreover, using impairment of behavior as a proxy for challenging behavior, 627 people with, and 1514 without such behavior were identified. RESULTS: Severe/profound ID was associated with lower odds of diagnoses of psychotic, affective, and anxiety disorders than was mild/moderate ID. People with moderate ID had higher odds than those with mild ID of having diagnoses of affective disorders. Diagnoses of psychotic, affective, and anxiety disorders, and dementia were more common among people with challenging behavior than among those without. CONCLUSIONS: People with severe/profound ID had lower odds of receiving psychiatric diagnoses than those with mild and moderate ID. Whether this is a result of differences in prevalence of disorders or diagnostic difficulties is unknown. Further, challenging behaviors were associated with diagnoses of psychiatric disorders. However, the nature of this association remains unclear.

Psychiatric care utilization among older people with intellectual disability in comparison with the general population: a register study.

BACKGROUND: People with intellectual disability have been found to have higher prevalence of psychiatric disorders than the general population. However, they do not seem to have a corresponding increase in psychiatric care utilization. The aim of the present study was to investigate psychiatric care utilization among older people with intellectual disability. METHODS: We used a cohort of people with intellectual disability, 55+ years in 2012 (n = 7936), and an equally sized age and sex matched reference cohort from the general population. Psychiatric care utilization was measured using registrations in the Swedish National Patient register during 2002-2012, where each registration corresponds to a psychiatric care occasion. RESULTS: About 20 % of those with intellectual disability had at least one registration during the study period, compared to some 6 % in the general population sample. In the whole cohort as well as stratified by sex, people with intellectual disability were 3-4 times more likely than those in the general population sample to have had at least one registration during the study period. The effect was, however, only consistent in age groups comprising people younger than 65 years. Among people with intellectual disability, men were more likely than women to have had at least one registration, and people living in special housing (group home or service home) during the entire study period were less likely than those who only lived in special housing for parts of the study or not at all. People with intellectual disability had longer stays per inpatient registration compared with the general population sample. When stratifying on sex, the effect was found only among men, although there were no sex differences within the cohort of people with intellectual disability. Among people with intellectual disability, living in special housing during the entire study period was associated with shorter stays per inpatient registration. CONCLUSIONS: Although people with intellectual disability had higher psychiatric care utilization than the general population during the 11 year study period, it does not correspond to the high prevalence of psychiatric disorders in this population. Future research is required to establish if the level of care utilization is appropriate among older people with intellectual disability.

Health care utilisation among older persons with intellectual disability and dementia: a registry study.

BACKGROUND: Both persons with intellectual disability (ID) and persons with dementia have high disease burdens, and consequently also high health care needs. As life expectancy increases for persons with ID, the group of persons with the dual diagnosis of ID and dementia will become larger. METHOD: Through national registries, we identified 7936 persons who had received support directed to persons with ID during 2012, and an age- and gender-matched sample from the general population. A national registry was also used to collect information on health care utilisation (excluding primary care) for the period 2002-2012. Health care utilisation was measured as presence and number of planned and unplanned in-patient and out-patient visits, as well as length of stay. RESULTS: In comparison with persons with ID but without dementia, persons with ID and dementia were more likely to have at least one planned out-patient visit (odds ratio [OR] 8.07), unplanned out-patient visit (OR 2.41), planned in-patient visit (OR 2.76) or unplanned in-patient visit (OR 4.19). However, among those with at least one of each respective outcome, the average number of visits did not differ between those with and without dementia. Persons with ID and dementia were less likely to have at least one planned out-patient visit than persons with dementia in the general population sample (OR 0.40), but more likely to have at least one unplanned in-patient visit (OR 1.90). No statistically significant differences were found for having at least one unplanned out-patient or planned in-patient visit. Nevertheless, among those with at least one unplanned out-patient visit, the number of visits was higher in the general population sample. CONCLUSIONS: Persons with ID and dementia are less likely to receive planned health care than persons with dementia in the general population. They have, however, higher levels of unplanned health care utilisation. This may be an indication that the current support system is not sufficient to meet the challenges of increased longevity among persons with ID.

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.

BACKGROUND: Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. METHODS: A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. RESULTS: A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. CONCLUSIONS: The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.

Individual Face-to-Face Cognitive Behavioural Therapy in Multiple Sclerosis: A Qualitative Study.

OBJECTIVE: To investigate how people with multiple sclerosis (MS) experience their participation in individual, face-to-face cognitive behavioural therapy (CBT) aimed at alleviating depressive symptoms. METHOD: Semistructured interviews with 12 participants were conducted after CBT and analyzed using qualitative content analysis. RESULTS: Two main themes emerged: CBT as a demanding process and confronting everyday life after CBT with self-knowledge and well-being. The participants had gained strategies for handling feelings of depression and anxiety. The therapist was considered important for guiding them through the demanding therapy. CONCLUSION: It is important to inform the participants of what CBT entails so that they are mentally prepared for the demanding process and can make the necessary adjustments in their daily life. Knowledge of MS among the therapists as well as collaboration with the multidisciplinary MS care may facilitate participation in CBT.

Prevalence of older people with intellectual disability in Sweden: a spatial epidemiological analysis.

BACKGROUND: The expected increase in longevity of individuals with intellectual disabilities (ID) in many countries of the world is a direct result of medical and social advances, which have also extended the longevity of the general population. It is important to assess the need for social services for people with ID across different administrative levels to ensure sufficient resources are allocated to where they are most needed. This study estimates the annual prevalence of older people with ID from 2004 to 2012 and in different counties and municipalities in Sweden, by sex and age group; identifies proxy indicators related to the care of older people with ID in different counties in 2012 in Sweden and analyses the spatial distribution and clustering of municipalities with a high prevalence of older people with ID. METHODS: Individuals with ID were identified through the national register based on the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (the LSS act) and the national death register. This study focuses on older individuals aged 55+ during the period of 2004-2012. The estimated prevalence was calculated at the county and municipality level and plotted on a municipality-level map. Moran's I statistics was used to identify any spatial clustering of municipalities with a large number of individuals with ID. RESULTS: The prevalence of ID among older individuals aged 55+ in Sweden increased from 2004 to 2012. The prevalence was consistently higher among men, and the gender gap increased slightly in recent years. Age-specific prevalence estimates showed ID to be higher in younger age groups, and the gender gap decreased in older age groups. The prevalence was higher in northern counties in Sweden (over 500 individuals per 100 000 population aged 55+). Higher prevalence areas were clustered in northern municipalities, whereas municipalities with high prevalence of older individuals with ID in the middle and southern regions of Sweden demonstrated a more widespread distribution. CONCLUSIONS: The existence of clusters of counties with a high prevalence of older individuals with ID necessitates further assessment of how resources have been allocated to different counties and municipalities in Sweden. Investigations of the quality of social services provided to individuals with ID across different counties in Sweden are warranted. It is important to ensure that high quality supports are being provided to older individuals with ID in order to grant them the same right to healthy ageing as their counterparts living without ID throughout their life course.

The patient's view of quality in psychiatric outpatient care.

The influence of demographic characteristics on patients' ratings of the quality of psychiatric outpatient care has been given little attention in research. The aim of the present study is to elucidate the quality of psychiatric care among outpatients and investigate demographic and clinical factors associated with the way in which this quality is perceived. A sample of 1340 outpatients from 15 general adult psychiatric clinics in Sweden completed the quality in psychiatric care-out-patient (QPC-OP), with a response rate of 71%. The patients' highest ratings were for Encounter; the lowest were for discharge. Most notably, quality of care was rated higher by women, older people, those with a partner, those with a lower educational level and those who were gainfully employed. In regard to visits to the clinic, higher quality of care was associated with shorter waiting time, better information and fewer professions encounters. Older people and those gainfully employed reported better mental health. Thus the QPC-OP was associated with both demographic and clinical factors. In particular, 'wanting to come back to the clinic' was the single strongest predictor of quality.

The patient's perception of having recovered from an eating disorder.

Our aim in this study was to describe how patients perceive having recovered from eating disorders. A qualitative method with a phenomenographic approach was used to identify various ways of experiencing recovery. Four categories emerged, describing how the subjects now relate in a relaxed and accepting manner to food, the body, themselves as individuals, and their social environment. Some perceived recovery as coping with emotions, while others experienced themselves as healthier than people in general regarding food and weight. Different aspects were emphasized as important for recovery. As long as patients perceive themselves as recovered, it is not necessary that they fulfill all conceivable criteria for recovery.

Interprofessional ethics rounds concerning dialysis patients: staff's ethical reflections before and after rounds.

OBJECTIVE: To evaluate whether ethics rounds stimulated ethical reflection. METHODS: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to stimulate ethical reflection and promote mutual understanding between professions but not to offer solutions. Questionnaires directly before and after rounds were answered by 194 respondents. The analyses were primarily content analysis with Boyd's framework but were also statistical in nature. FINDINGS: Seventy-six per cent of the respondents reported a moderate to high rating regarding new insights on ethical problem identification, but the ethics rounds did not seem to stimulate the ethical reflection that the respondents had expected (p < 0.001). Dominant new insights did not seem to fit into traditional normative ethics but were instead interpreted as hermeneutic ethics. This was illustrated in the extended perspective on the patient and increased awareness of relations to other professions. Regarding insights into how to solve ethical problems, the request for further interprofessional dialogue dominated both before and after rounds. CONCLUSION: The findings show the need for interprofessional reflective ethical practice but a balance between ethical reflection and problem solving is suggested if known patients are discussed. Further research is needed to explore the most effective leadership for reflective ethical practice.

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.

A comprehensive rehabilitation programme tailored to the needs of adults with muscular dystrophy.

OBJECTIVE: To assess if activities of daily living (ADL), coping and quality of life could be improved in adults with muscular dystrophy through a comprehensive rehabilitation programme. DESIGN: Quasi-experimental, controlled clinical study comparing patients with similar age and disease aspects. SETTING: Two different counties in Sweden, being either study or control setting. SUBJECTS: The study group comprised 37 adults (21 women, 16 men; mean age 50 years), while the control group comprised 39 people (25 women, 14 men; mean age 46 years). INTERVENTIONS: Four rehabilitation sessions tailored to different medical, physical and psychosocial needs of the patients, comprising a total of 10 days over a period of 18 months. MAIN MEASURES: ADL, the Mental Adjustment to Cancer Scale measuring coping strategies, the Sickness Impact Profile measuring health-related quality of life, the Hospital Anxiety and Depression Scale, and the Psychosocial Well-being Questionnaire. RESULTS: No significant differences were found between groups with regard to the outcome measures. There was increased dependence on others in ADL after 18 months in both groups, but it was more pronounced in the control group. Furthermore, a clear trend was observed in the data with regard to coping patterns, the control group using more coping strategies such as 'Helplessness/hopelessness' (P= 0.057), 'Anxious preoccupation' (P = 0.085) and 'Fatalistic' (P= 0.073) when being compared to the study group. CONCLUSIONS: No apparent effects on ADL were found from the rehabilitation programme, although there was a tendency of reduction of maladaptive coping patterns in the study group. This initial study may provide the rationale and basis for a randomized controlled trial.

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.

Trauma-related distress and mood disorders in the early stage of an acute traumatic hand injury.

The aim of the study was to estimate the incidence of trauma-related distress and mood disorders in the early stages after acute traumatic hand injuries and identify characteristics associated with these reactions. Data were obtained from 112 patients by means of mailed questionnaires and medical records. Nearly half of the patients had increased levels of intrusive and avoidance symptoms, indicating trauma-related distress. One-third showed signs of a mood disorder. Mood disorders were associated with the need for help with activities of daily living, pain and avoidance symptoms. The study showed that emotional problems in the early stages after injury are related to the consequences of both the injury and the traumatic experience. Negative reactions to the sight of the hand were associated with both trauma-related distress and mood disorders, suggesting that observation of the reactions to the sight of the hand could help to identify patients in need of psychological support.