Patient organizations and primary care development: reflections by patients with chronic diseases

To explore how patients with chronic diseases, as well as members of patient organizations, perceive primary care and how they think about how to participate in primary care development. Focus group interviews with 28 patients in three regions in Sweden were conducted. We identified four themes: Availability of care, How to be met by professionals, Information needs and Continuity and prevention in care. Important was to meet the same doctor at every visit and to be met with empathy and knowledge about your disease. Suggestions about better use of technical information services, introduction of a coordinator in the waiting room and longer and varied open hours came up. The information needs for newly diagnosed and those with a long disease trajectory differed and care treatment plans were asked for by many participants. Discussions between patient organizations about how to participate in education of health care professionals were recommended. Patients’ with chronic diseases want to take more active part in their own care. By promoting more contacts between patient organizations, influence on the politic agendas may be achieved. To achieve effects, the patient organizations should be proposed to be included and to activate themselves about these results. If so, a stronger patient voice may be heard in the society. A change in the paternalistic philosophy in primary health care is also needed so the patients’ rights and contribution will be acknowledged and joint education with health professionals could be one way

A tool for holistic assessment of digitalization capabilities in manufacturing SMEs

In a constantly evolving global market, manufacturing companies need to be flexible and adaptive to survive. Digital twins of production systems have been proposed as one part of the solution, however this comes with multiple challenges. Manufacturing SMEs have limited resources and need to direct their efforts in this area wisely. This paper presents a tool for holistic assessment of an SME manufacturer\u27s level of digitalization, in order to visualize current gaps and guide digitalization efforts over a production system\u27s life cycle. The tool was empirically developed together with Manufacturing SMEs and has strengthened their digitalization awareness and capabilities

Predicting discharge location of hip fracture patients; the new discharge of hip fracture patients score

Purpose This paper reports on the development and validity of a new instrument, called the discharge of hip fracture patients score (DHP), that predicts at admission the discharge location in patients living in their own home prior to hip fracture surgery. Methods A total of 310 patients aged 50 years and above were included. Risk factors for discharge to an alternative location (DAL) were analysed with a multivariable regression analysis taking the admission variables into account with different weights based on the estimates. The score ranged from 0-100 points. The cut-off point for DAL was calculated using a ROC analysis. Reliability of the DHP was evaluated. Results Risk factors for DAL were higher age, female gender, dementia, absence of a partner and a limited level of mobility. The cut-off point was set at 30 points, with a sensitivity of 83.8%, a specificity of 64.7% and positive predictive value of 79.2%. Conclusion The DHP is a valid, simple and short instrument to be used at admission to predict discharge location of hip fracture patients

Living with Ehlers-Danlos syndrome

This thesis focuses on how individuals with the Ehlers-Danlos syndrome (EDS), an inherited connective-tissue disorder, experience and describe their daily lives with focus on physical and psychosocial problems. The syndrome primarily affects the skin, ligaments, joints and blood vessels and the symptoms in EDS vary from mild to more severe forms. Individuals with EDS were recruited via the Swedish National EDS Association. Paper (I). The aim was to explore how individuals with EDS perceive their daily life. Eleven individuals were interviewed. The collection and analysis of-data were guided by the basic principles of the constant comparative method. The identified main theme, "Living a restricted life," seemed to explain the way in which fears, pain, stigmatisation and experiences of non-affirmation in health-care limited the interviewees possibilities of self-actualisation in daily living and social life. Paper (II). The aims were to describe symptoms reported by individuals with EDS, to investigate the impact on functional health-status by means of the Sickness Impact Profile (SIP) and to compare these results with those from a Swedish reference group and from females with rheumatoid arthritis (RA) and fibromyalgia (FS). The mailed questionnaires were completed by 77 individuals. The most frequent symptoms were related to activity (75%), pain (71%) and skin/tissue (52%). Pain was reported by 37 individuals (48%) as their most severe symptom. The functional health in the EDS group was in comparison with a reference group significantly affected, and the females with EDS reported higher SIP score than the females with RA. hi comparison with females with FS, the EDS females rated their functional health as worse on the SIP physical dimension scale and on the SIP subscale home management and as better on the SIP subscale work. Paper (III). The aims were to investigate the amount and severity of podiatric problems as well as their consequences on daily life activities, and to compare these results with data from a randomly chosen comparison group from the general population. A foot-specific questionnaire was answered by 136 individuals with EDS and by 292 individuals in the comparison group. The results showed that daily life activities in the EDS group were strongly restricted by their foot pain and related disability. Paper (IV). The aims were to describe the degree to which individuals with EDS accept and cope with perceived limitations related to the syndrome and to determine the relationships between acceptance of disability, sense of coherence, functional health-status and background data. Seventy-seven individuals with EDS answered two questionnaires (the ADM and the SOC scales). The results showed that the level of acceptance of disability (ADM) and sense of coherence (SOC) in the EDS group is similar to other patient groups, e.g. individuals with ostomy and diabetes. Further, a greater ADM was associated with a higher level of SOC and a better functional health-status. In conclusion, these studies indicate substantial impact of EDS on everyday life. Hypermobile joints, fragile tissues, foot deformities and chronic pain limit the EDS individuals' participation in daily life activities. For health promotion in nursing practice, it is important to have insight and knowledge into the problems that may influence the overall life situation of individuals with EDS

Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS) : a questionnaire study

Background: Many individuals with Ehlers-Danlos Syndrome (EDS) are hypermobile, suffer from long term pain, and have complex health problems. Since these sometimes have no objective physical signs, individuals with EDS sometimes are referred for psychiatric evaluation. The aim was therefore to identify the level of anxiety and quality of life in a Swedish group of individuals with EDS. Methods: A postal survey in 2008 was distributed to 365 members over 18 years of the Swedish National EDS Association and 250 with EDS diagnosis responded. Two questionnaires, the Hospital Anxiety and Depression Scale (HADS) and SF-36, were used. A Swedish population study was used to compare results from SF-36. Independent Student's t-test was used to compare differences between groups, possible relationships were tested using Spearman's correlation coefficient and the General Linear Model was used for regression analyses. Higher scores on HADS represent higher levels of anxiety and depression and higher scores on SF-36 represent higher quality of health. Results: Of the respondents 74.8% scored high on anxiety and 22.4% scored high on depression on the HADS. Age, tiredness and back pain was independently associated with the HAD anxiety score in a multiple regression analysis, When comparing the SF-36 scores from the EDS group and a Swedish population group, the EDS group scored significantly lower, indicating lower health-related quality of health than the general population (p < 0.001). Conclusions: In comparison with a Swedish population group, a lower health-related quality of life was found in the EDS group. Also, higher levels of anxiety and depression were detected in individuals with EDS. The importance to explore the factors behind these results and what initiatives can be taken to alleviate the situation for this group is emphasized

Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS) : a questionnaire study

Background: Many individuals with Ehlers-Danlos Syndrome (EDS) are hypermobile, suffer from long term pain, and have complex health problems. Since these sometimes have no objective physical signs, individuals with EDS sometimes are referred for psychiatric evaluation. The aim was therefore to identify the level of anxiety and quality of life in a Swedish group of individuals with EDS. Methods: A postal survey in 2008 was distributed to 365 members over 18 years of the Swedish National EDS Association and 250 with EDS diagnosis responded. Two questionnaires, the Hospital Anxiety and Depression Scale (HADS) and SF-36, were used. A Swedish population study was used to compare results from SF-36. Independent Student's t-test was used to compare differences between groups, possible relationships were tested using Spearman's correlation coefficient and the General Linear Model was used for regression analyses. Higher scores on HADS represent higher levels of anxiety and depression and higher scores on SF-36 represent higher quality of health. Results: Of the respondents 74.8% scored high on anxiety and 22.4% scored high on depression on the HADS. Age, tiredness and back pain was independently associated with the HAD anxiety score in a multiple regression analysis, When comparing the SF-36 scores from the EDS group and a Swedish population group, the EDS group scored significantly lower, indicating lower health-related quality of health than the general population (p < 0.001). Conclusions: In comparison with a Swedish population group, a lower health-related quality of life was found in the EDS group. Also, higher levels of anxiety and depression were detected in individuals with EDS. The importance to explore the factors behind these results and what initiatives can be taken to alleviate the situation for this group is emphasized