| 1. |
- Alriksson-Schmidt, Ann I, et al.
(författare)
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A combined surveillance program and quality register improves management of childhood disability
- 2017
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Ingår i: Disability and Rehabilitation. - : TAYLOR & FRANCIS LTD. - 0963-8288 .- 1464-5165. ; 39:8, s. 830-836
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To describe a concept for prevention of secondary conditions in individuals with chronic neuromuscular disabilities by using two Swedish developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele (MMC; MMCUP) respectively as examples. Method: This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP. Results: Both programmes are multidisciplinary longitudinal follow-up programmes that simultaneously serve as national registries. The programmes are population-based and set in Swedish habilitation clinics. Most children (95%) born 2000 or later with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has also been implemented in Norway, Denmark, Iceland, Scotland and parts of Australia. In MMCUP, almost all children with MMC born 2007 or later participate and individuals of all ages are now invited. The registries provide epidemiological profiles associated with CP and MMC and platforms for population-based research and quality of care improvement. Conclusions: Through multidisciplinary follow-up and early detection of emerging complications individuals with CP or MMC can receive less complex and more effective interventions than if treatment is implemented at a later stage. Possibilities and challenges to design, implement and continuously run multidisciplinary secondary prevention follow-up programmes and quality registries for individuals with CP or MMC are described and discussed.Implications for rehabilitationIndividuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions.Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions. IMPLICATIONS FOR REHABILITATION Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.
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| 2. |
- von Bahr, Lena, et al.
(författare)
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Long-term complications, immunologic effects, and role of passage for outcome in mesenchymal stromal cell therapy
- 2012
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Ingår i: Biology of blood and marrow transplantation. - : Elsevier BV. - 1083-8791 .- 1523-6536. ; 18:4, s. 557-564
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Tidskriftsartikel (refereegranskat)abstract
- Thirty-one patients treated with mesenchymal stromal cells (MSCs) for acute graft-versus-host disease (aGVHD) or hemorrhagic cystitis between 2002 and 2007 were followed to investigate predictors of outcome, immunologic effects in vivo, and long-term survival. There was no correlation between in vitro suppression by MSCs in mixed lymphocyte cultures and outcome. Soluble IL-2 receptors were measured in blood before and after MSC infusion and declined significantly during the first week after MSC infusion (P = .03). Levels of interleukin-6 and HLA-G were unaffected. Infectious complications occurred several years after recovery from aGVHD. Cytomegalovirus viral load was high, and cytomegalovirus disease was common. Among patients recovering from aGVHD, 54% died of late infections, between 4 months and 2 years after MSC treatment. No increase in leukemia relapse or graft rejection was found. Children had a better survival rate than adults (P = .005). In GVHD patients, 1-year survival was 75% in patients who received early-passage MSCs (from passages 1-2) in contrast to 21% using later passage MSCs (from passages 3-4) (P < .01). We conclude that treatment with early-passage MSCs improved survival in patients with therapy-resistant GVHD. Death from infection was common in MSC-treated patients, but there was no increase in leukemia relapse.
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| 3. |
- Alriksson-Schmidt, Ann, et al.
(författare)
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Follow-up of individuals with cerebral palsy through the transition years and description of adult life : the Swedish experience.
- 2014
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Ingår i: Journal of pediatric rehabilitation medicine. - 1875-8894. ; 7:1, s. 53-61
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To describe the process of providing healthcare through the transition years to individuals with cerebral palsy (CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish adults with CP.METHODS: A descriptive cross-sectional study of 102 participants (63 males) participating in a standardized follow-up program called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS).RESULTS: Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p< 0.001) and 14 of 20 with severe disabilities lived with their parents. Thirty-four of 70 reported personal assistance; use of assistance correlated (p< 0.001) with GMFCS (r(s) =0.71) and MACS (r(s) = 0.70). Thirty five were "students", 20 "employed", 36 in "daily activities", and 9 were "unemployed". Of those employed, 18 had GMFCS levels I-II.CONCLUSION: Some young adults with CP and severe functional limitations manage independent living - however, many still live with their parents. Although many are students, a large number are unemployed. There is disconnect between the pediatric and adult healthcare systems. CPUP may facilitate in making the transition smoother.
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| 4. |
- Alriksson-Schmidt, Ann, et al.
(författare)
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Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP
- 2019
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Ingår i: Jmir Research Protocols. - Toronto, Canada : JMIR Publications Inc.. - 1929-0748. ; 8:10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population. Objective: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP. Methods: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed. Results: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained. Conclusions: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP.
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| 5. |
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| 6. |
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| 7. |
- Andriesse, Hanneke, et al.
(författare)
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Motor ability in children treated for idiopathic clubfoot. A controlled pilot study
- 2009
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- Background: To study motor ability at seven years of age in children treated for idiopathic clubfoot and its relation to clubfoot laterality, foot status and the amount of surgery performed. Methods: Twenty children (mean age 7.5 years, SD 3.2 months) from a consecutive birth cohort from our hospital catchments area (300.000 inhabitants from southern Sweden) were assessed with the Movement Assessment Battery for Children (MABC) and the Clubfoot Assessment Protocol (CAP). Results: Compared to typically developing children an increased prevalence of motor impairment was found regarding both the total score for MABC (p < 0.05) and the subtest ABC-Ball skills (p < 0.05). No relationship was found between the child's actual foot status, laterality or the extent of foot surgery with the motor ability as measured with MABC. Only the CAP item "one-leg stand" correlated significantly with the MABC (rs = -0.53, p = 0.02). Conclusions: Children with idiopathic clubfoot appear to have an increased risk of motor activity limitations and it is possible that other factors, independent of the clinical status, might be involved. The ability to keep balance on one leg may be a sufficient tool for determining which children in the orthopedic setting should be more thoroughly evaluated regarding their neuromotor functioning.
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| 8. |
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| 9. |
- Arner, Marianne, et al.
(författare)
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CPUP - årsrapport 2007
- 2007
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Bok (populärvet., debatt m.m.)abstract
- Detta är den andra årsrapporten för CPUP (Uppföljningsprogram för cerebral pares) som nationellt kvalitetsregister.
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| 10. |
- Arvidsson, Linnea, et al.
(författare)
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Virtual Follow up After Distal Radius Fracture Surgery — Patient Experiences During the COVID-19 Pandemic
- 2023
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Ingår i: Journal of Patient Experience. - Thousand Oaks, CA : Sage Publications. - 2374-3735 .- 2374-3743. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- The majority of patients with a distal radius fracture (DRF) are elderly, a group known to experience difficulties with new technology, partly due to a low level of digital literacy. At the beginning of the coronavirus disease 2019 pandemic, during the spring 2020, patients that underwent DRF surgery had regular follow-ups replaced by video calls from their surgeon and physiotherapist. Afterward, patients answered questionnaires regarding health and digital literacy and took part in semistructured interviews regarding the experience of the virtual follow-up. By systemic text condensation, 2 major categories were identified: (1) The video call—new, but surprisingly simple: All but 1 found it easier than expected, and (2) Video calls—the patient's choice: All but 1 patient preferred video calls to physical visits for follow-up. This is the first mixed methods study to assess patients’ experiences of digital follow-up after DRF surgery. This study indicates that digital follow-up was highly appreciated, even among patients with low levels of digital literacy. Digital technologies must be made suitable even for patients with inadequate levels of digital literacy. © The Author(s) 2023.
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| 11. |
- Brännström, Margareta, et al.
(författare)
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Unequal care for dying patients in Sweden : a comparative registry study of deaths from heart disease and cancer
- 2012
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Ingår i: European Journal of Cardiovascular Nursing. - : Elsevier. - 1474-5151 .- 1873-1953. ; 11:4, s. 454-459
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The Swedish Palliative Registry is a nationwide quality registry aimed at facilitating improvement in end-of-life care. The goal is for the registry to list and report quality indicators related to care during the last week of life in all cases expected death in Sweden.AIM: To examine the quality of care during the last week of life as reported to the registry for patients with heart disease compared to those with cancer.METHOD: A retrospective registry study.RESULTS: Patients dying of heart disease compared to those dying from cancer had more shortness of breath, fewer drugs prescribed as needed against the usual symptoms and often died alone. Furthermore, they and their close relatives received less information about the imminence of death and bereavement follow-up was less common. The healthcare personnel were less aware of the heart disease patients' symptoms and less often knew about where they wished to die.CONCLUSION: Great differences were found in registered end-of-life care suggesting that the care given to patients with heart disease and cancer was unequal even after adjustment for age, sex and setting at the time of death. If our observational findings are confirmed in future studies there is obviously a need for new models for end-of-life management in order to facilitate the provision of equal care to dying patients regardless of diagnosis.
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| 12. |
- Chounti, A., et al.
(författare)
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Sex differences in cerebral palsy incidence and functional ability: a total population study
- 2013
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Ingår i: Acta Pædiatrica. - : Wiley. - 1651-2227 .- 0803-5253. ; 102:7, s. 712-717
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Tidskriftsartikel (refereegranskat)abstract
- Aim To describe gender difference in a total population of children with cerebral palsy (CP), related to subtype, gross and fine motor function, and to compare CP incidence trends in girls and boys. Methods All 590 children with CP born in southern Sweden 1990-2005 were included. CP subtype was classified according to the Surveillance of Cerebral Palsy in Europe, gross motor function according to Gross Motor Function Classification System (GMFCS) and manual ability according to Manual Ability Classification System (MACS). Trends in CP incidence by birth year were analysed using Poisson regression modelling. Results There was a male predominance in all levels of GMFCS except level II, in all levels of MACS and in all CP subtypes except ataxic CP. There was no statistically significant difference between males and females regarding gross motor function or manual ability. The CP incidence trends in boys compared with girls did not change during the period 1990-2005. Conclusion No equalization was detected in the incidence of CP between girls and boys during recent years in this total population. We could not confirm any consistent sex difference in motor function levels. Male sex is a risk factor for CP.
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| 13. |
- Hägglund, Doris, et al.
(författare)
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Enabling and inhibitory factors that influenced implementation of evidence-based practice for urinary incontinence in a nursing home
- 2017
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Ingår i: Nordic journal of nursing research. - : SAGE Publications. - 2057-1585 .- 2057-1593. ; 37:2, s. 109-116
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the present follow-up study was to describe staff perceptions of enabling and inhibitory factors that influenced implementation of evidence-based practice (EBP) for urinary incontinence in a nursing home. Focus group interviews were carried out and the text was deductively analyzed using the PARIHS framework and qualitative content analysis. Factors believed to be most enabling for implementation were the EBP being considered as relevant and as a social process and visiting the lavatory being considered as a right for all. One determinant of successful implementation was having clear and involved leaders who had a continuous positive attitude toward the EBP and demanded results. Staffs who were given the role of continence agents were important facilitators. The factor believed to inhibit implementation most was staff having to carry out pad-weight tests before prescribing individual incontinence aids. The EBP offers a successful concept for caring for older persons with urinary incontinence in nursing homes. The EBP should be spread, both local and more widely.
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| 14. |
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| 15. |
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| 16. |
- Hägglund, Gunnar, et al.
(författare)
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Prevention of dislocation of the hip in children with cerebral palsy : 20-year results of a population-based prevention programme.
- 2014
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Ingår i: The bone & joint journal. - 2049-4408. ; 96-B:11, s. 1546-52
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Tidskriftsartikel (refereegranskat)abstract
- In 1994 a cerebral palsy (CP) register and healthcare programme was established in southern Sweden with the primary aim of preventing dislocation of the hip in these children. The results from the first ten years were published in 2005 and showed a decrease in the incidence of dislocation of the hip, from 8% in a historical control group of 103 children born between 1990 and 1991 to 0.5% in a group of 258 children born between 1992 and 1997. These two cohorts have now been re-evaluated and an additional group of 431 children born between 1998 and 2007 has been added. By 1 January 2014, nine children in the control group, two in the first study group and none in the second study group had developed a dislocated hip (p < 0.001). The two children in the first study group who developed a dislocated hip were too unwell to undergo preventive surgery. Every child with a dislocated hip reported severe pain, at least periodically, and four underwent salvage surgery. Of the 689 children in the study groups, 91 (13%) underwent preventive surgery. A population-based hip surveillance programme enables the early identification and preventive treatment, which can result in a significantly lower incidence of dislocation of the hip in children with CP.
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| 17. |
- Hägglund, Gunnar, et al.
(författare)
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Prevention of dislocation of the hip in children with cerebral palsy. The first ten years of a population-based prevention programme.
- 2005
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Ingår i: Journal of Bone and Joint Surgery: British Volume. - 2044-5377. ; 87:1, s. 95-101
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Tidskriftsartikel (refereegranskat)abstract
- In 1994, a register for cerebral palsy and a health-care programme were started in southern Sweden with the aim of preventing dislocation of the hip in children with cerebral palsy. It involved all children with cerebral palsy born in 1992 or later. None of the 206 affected children born between 1992 and 1997 has developed a dislocation following the introduction of the prevention programme. Another 48 children moved into the area and none developed any further dislocation. Of the 251 children with cerebral palsy, aged between five and 11 years, living in the area on January 1, 2003, only two had a dislocated hip. One boy had moved into the area at age of nine with a dislocation and a girl whose parents chose not to participate in the programme developed bilateral dislocation. One boy, whose condition was considered to be too poor for preventative surgery, developed a painful dislocation of the hip at the age of five years and died three years later. Eight of 103 children in a control group, consisting of all children with cerebral palsy living in the area between 1994 and 2002, and born between 1990 and 1991, developed a dislocation of the hip before the age of six years. The decreased incidence of dislocation after the introduction of the prevention programme was significant (p < 0.001). Dislocation of the hip in cerebral palsy remains a serious problem, and prevention is important. Our screening programme and early intervention when lateral displacement of the femoral head was detected appear to be successful.
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| 18. |
- Hägglund, Gunnar, et al.
(författare)
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Prevention of severe contractures might replace multilevel surgery in cerebral palsy: results of a population-based health care programme and new techniques to reduce spasticity
- 2005
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Ingår i: Journal of Pediatric Orthopedics. Part B. - 1473-5865. ; 14:4, s. 269-273
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Tidskriftsartikel (refereegranskat)abstract
- During the 1990s three new techniques to reduce spasticity and dystonia in children with cerebral palsy (CP) were introduced in southern Sweden: selective dorsal rhizotomy, continuous intrathecal baclofen infusion and botulinum toxin treatment. In 1994 a CID register and a health care programme, aimed to prevent hip dislocation and severe contractures, were initiated in the area. The total population of children with CP born 1990-1991, 1992-1993 and 1994-1995 was evaluated and compared at 8 years of age. In non-ambulant children the passive range of motion in hip, knee and ankle improved significantly from the first to the later age groups. Ambulant children had similar range of motion in the three age groups, with almost no severe contractures. The proportion of children treated with orthopaedic surgery for contracture or skeletal torsion deformity decreased from 40 to 15% (P=0.0019). One-fifth of the children with spastic diplegia had been treated with selective dorsal rhizotomy. One-third of the children born 1994-1995 had been treated with botulinum toxin before 8 years of age. With early treatment of spasticity, early non-operative treatment of contracture and prevention of hip dislocation, the need for orthopaedic surgery for contracture or torsion deformity is reduced, and the need for multilevel procedures seems to be eliminated.
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| 19. |
- Hägglund, Lena, et al.
(författare)
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A mixed methods study of Tai Chi exercise for patients with chronic heart failure aged 70 years and older
- 2018
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Ingår i: Nursing Open. - : Wiley-Blackwell. - 2054-1058. ; 5:2, s. 176-185
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectivesThis study aimed to evaluate Tai Chi group training among patients with chronic heart failure (CHF) aged 70 years and older.BackgroundPhysical activity is recommended for CHF treatment. Tai Chi is found to be beneficial to different patient groups, although few studies focus on older patients with CHF.DesignA mixed methods study. Participants were randomly assigned to Tai Chi training twice a week for 16 weeks (N = 25) or control (N = 20). Quantitative data were collected at baseline, at the end of the training period and 6 months after training, assessing self-rated fatigue and quality of life, natriuretic peptides and physical performance. Individual qualitative interviews were conducted with participants (N = 10) in the Tai Chi training group.ResultsNo statistical differences between the Tai Chi training group and the control group in quality of life or natriuretic peptides was found. After 16 weeks, the training group tended to rate more reduced activity and the control group rated more mental fatigue. Participants in the training group rated increased general fatigue at follow-up compared with baseline. Qualitative interviews showed that Tai Chi training was experienced as a new, feasible and meaningful activity. The importance of the leader and the group was emphasized. Improvements in balance were mentioned and there was no physical discomfort.ConclusionTai Chi was experienced as a feasible and meaningful form of physical exercise for patients with CHF aged over 70 years despite lack of achieved health improvement. Further investigations, using feasibility and meaningfulness as outcome variables seems to be useful.
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| 20. |
- Hägglund, Lena, et al.
(författare)
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Depression among elderly people with and without heart failure, managed in a primary healthcare setting.
- 2008
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 22:3, s. 376-382
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND AND RESEARCH OBJECTIVES: Depression is common among patients with heart failure (HF) and among elderly in general. Problems in diagnosing and care planning can arise as symptoms of HF, dyspnoea and especially fatigue, are nonspecific and also overlap with symptoms of depression. The objective of this study was to describe the prevalence and compare degrees of depression among patients with confirmed HF, patients with symptoms similar to HF (no heart failure, NHF) and a reference group in one primary healthcare centre (PHC), after adjusting for background characteristics and fatigue. SUBJECTS AND METHODS: A descriptive case-reference study was conducted in one PHC in a middle-sized city. Participants were 49 patients with confirmed HF, 59 patients with symptoms similar to HF (NHF) and 40 people in a reference group. After informed consent data were collected by structured interviews using the Geriatric Depression Scale and the Multidimensional Fatigue Inventory-20. Odds ratios for the outcomes HF vs. NHF, HF vs. reference group, and NHF vs. reference group were calculated. RESULTS: The HF and NHF groups had similar degrees of depression which were significantly higher than for the reference group. This difference between the groups did not remain significant when adjusting for physical fatigue. More patients in the NHF than in the HF group were living alone and there were more women in the NHF than in the reference group. CONCLUSIONS: Prevalence of depression and degrees of fatigue were higher among elderly from a PHC who experienced HF symptoms, independent of objectively measured heart function, compared with elderly without such symptoms. When comparing degrees of depression between the three groups and adjusting for fatigue, the physical dimension of fatigue was of greater importance in explaining group differences.
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| 21. |
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| 22. |
- Hägglund, Lena, et al.
(författare)
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Fatigue and health-related quality of life in elderly patients with and without heart failure in primary healthcare.
- 2007
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 6:3, s. 208-215
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Tidskriftsartikel (refereegranskat)abstract
- Patients with heart failure (HF) in primary healthcare are in many respects not comparable to those in specialized care and the knowledge about different patient groups with and without HF is limited. Aims To compare fatigue and health-related quality of life (Hr-QoL) when adjusting for age, gender and social provision in patients with confirmed HF ( n=49) to a group of patients with symptoms indicating HF but without HF (NHF, n=59) and to an age-and sex-matched control-group ( n=40). Method A questionnaire including the Multidimensional Fatigue Inventory, the SF-36, and the Social Provisions Scale was used. Results The average age in all groups was 78 years. Patients in the HF and NHF groups reported worse physical QoL and more general and physical fatigue than the control group. HF patients had worse general health than the NHF group. Conclusion Elderly patients in primary healthcare with confirmed heart failure and patients with symptoms similar to heart failure perceived they had a significantly worse physical QoL and more general and physical fatigue than an age- and sex-matched control group. The similarities between the patient groups indicate the importance of the symptom experience for Hr-QoL.
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| 23. |
- Hägglund, Lena, 1954-
(författare)
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Man måste vila emellanåt : patienters självskattade och berättade erfarenheter av att leva med kronisk hjärtsvikt
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall purpose was to explore the experience of living with chronic heart failure among patients in primary healthcare. Comparisons were made between patients with confirmed heart failure (HF, n=49), patients with symptoms indicating HF but with no HF (NHF, n=59), and a reference group (n=40). The mean age was 77 years. Patients in the HF and NHF groups had more general and physical fatigue, more reduced activity, worse physical quality of life and higher degree of depression compared with the reference group. The HF group had also higher degree of physical fatigue and worse physical quality of life than the NHF group. When comparing degrees of depression between the three groups and adjusting for fatigue, the physical dimension of fatigue was of greater importance in explaining group differences. In the HF group general fatigue was more closely related to limitations in role functioning for physical reasons than to reduced physical function per se. Women experienced more fatigue than men. Narrative interviews were conducted with ten women with confirmed heart failure, aged 73-89 years, with special reference to fatigue. The findings were presented in two themes, ‘living with the loss of physical energy’, and ‘striving for independence while being aware of deteriorating health’. The conclusion in study IV was in accordance with the results in the quantitative studies, indicating that the experience of HF or symptoms similar to HF had the greatest impact on the physical dimensions of fatigue and health-related quality of life. From a clinical perspective the findings in this thesis emphasize the importance of careful investigation of each patients experienced problems. In particular symptoms of depression and different dimensions of fatigue need to be analysed. Interventions aimed at reducing fatigue needs to be developed, and its further impact on health-related quality of life should be investigated.
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| 24. |
- Hägglund, Lena, et al.
(författare)
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The experience of fatigue among elderly women with chronic heart failure.
- 2008
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 7:4, s. 290-295
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Fatigue is a common and distressing symptom in chronic heart failure (CHF). Most of the current methods for evaluating patients' symptoms fail to consider the meaning or importance that these symptoms have for the patient. AIM: To illuminate the lived experience of fatigue among elderly women with CHF. METHOD: Narrative interviews were conducted with 10 women with CHF, aged 73-89 years. Interviews were analysed with qualitative content analysis. RESULTS: The findings are presented in two themes and five subthemes. The first theme, 'living with the loss of physical energy', was based on three subthemes describing the experience of fatigue: 'experiencing a substantial presence of feebleness and unfamiliar bodily sensations', 'experiencing unpredictable variations in physical ability', and 'needing help from others in daily life'. The second theme, 'striving for independence while being aware of deteriorating health', describes how the women managed their life situation; it was based on two subthemes: 'acknowledging one's remaining abilities', and 'being forced to adjust and struggle for independence'. CONCLUSIONS: Fatigue was experienced as loss of physical energy, leading to discrepancies between intention and capacity. The will to reduce dependency on others involved a daily struggle against fatigue.
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| 25. |
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| 26. |
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| 27. |
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| 28. |
- Hägglund, Patricia, et al.
(författare)
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Older people with swallowing dysfunction and poor oral health are at greater risk of early death
- 2019
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Ingår i: Community Dentistry and Oral Epidemiology. - : John Wiley & Sons. - 0301-5661 .- 1600-0528. ; 47:6, s. 494-501
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: We investigated the associations between swallowing dysfunction, poor oral health and mortality among older people in intermediate care in Sweden.Methods: This prospective cohort study investigated 391 older people in 36 intermediate care units (clusters). Swallowing function was assessed with the timed water swallow test (TWST), and oral health with the revised oral assessment guide (ROAG) at baseline. Data were collected on age, sex, education level, multimorbidity, cognitive impairment, care dependency and body mass index (BMI). Time to mortality was recorded during the following year. The mixed effects Cox regression model with cluster as a random factor was used to estimate hazards ratios (HR) with 95% confidence intervals (CI).Results: The median age of the participants was 84 years (interquartile range [IQR]: 11), and 53.3% were females. Mortality within one year was 25.1%. In the adjusted model, swallowing dysfunction and poor oral health were both independently associated with mortality (adjusted HR [aHR]: 1.67, 95% CI 1.02‐2.75; P = .041 and aHR: 1.98, 95% CI 1.07‐3.65; P = .029, respectively). Participants with combined swallowing dysfunction and poor oral health showed the highest mortality (35.0%) and 2.6 (95% CI 1.15‐5.89; P = .022) times higher mortality risk than those with normal swallowing function and good oral health (13.0%).Conclusions: Swallowing dysfunction and poor oral health were identified as independent risk factors for mortality in older people in intermediate care. Although further studies are required to verify these findings, they suggest that systematic assessment of swallowing function and oral health status should be performed for care considerations.
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| 29. |
- Hägglund, Patricia, et al.
(författare)
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Study protocol for the SOFIA project : Swallowing function, oral health, and food intake in old age
- 2017
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Ingår i: BMC Geriatrics. - : Springer Science and Business Media LLC. - 1471-2318. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Extensive studies have shown that older people are negatively impacted by impaired eating and nutrition. The abilities to eat, enjoy food, and participate in social activities associated with meals are important aspects of health-related quality of life (HRQoL) and recovery after illness. This project aims to (i) describe and analyze relationships between oral health and oral HRQoL, swallowing ability, eating ability, and nutritional risk among older individuals admitted to short-term care; (ii) compare the perceptions that older individuals and staff report on care quality related to oral hygiene and eating; and (iii) study the feasibility and effects of a training program for people with impaired swallowing (i.e., dysphagia).METHODS/DESIGN: This project consists of two parts, which will be performed in five Swedish counties. It will include approximately 400 older individuals and 200 healthcare professionals. Part 1 is a cross-sectional, descriptive study of older people admitted to short-term care. Subjects will be assessed by trained professionals regarding oral health status, oral HRQoL, eating and nutritional risk, and swallowing ability. Swallowing ability will be measured with a teaspoon test and a swallowing capacity test (SCT). Furthermore, subjects and staff will complete a questionnaire regarding their perceptions of care quality. Part 2 is a cluster randomized intervention trial with controls. Older participants with dysphagia (i.e., SCT <10 ml/s, measured in part 1) will be recruited consecutively to either the intervention or control group, depending on where they were admitted for short-term care. At baseline, all subjects will be assessed for oral health status, oral HRQoL, eating and nutritional risk, swallowing ability, and swallowing-related QoL. Then, the intervention group will receive 5 weeks of training with an oral screen for neuromuscular training focused on orofacial and pharyngeal muscles. After completing the intervention, and at six months post-intervention, all assessments will be repeated in both study groups.DISCUSSION: The results will make important contributions to rehabilitation knowledge, including approaches for improving swallowing function, oral health, and food intake and for improving the quality of oral care for older people.TRIAL REGISTRATION: This trial was retrospectively registered at ClinicalTrials.gov, on July 4, 2016, identifier: NCT02825927 .
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| 30. |
- Hägglund, Patricia, et al.
(författare)
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Study protocol for the SOFIA project : Swallowing function, Oral health, and Food Intake in old Age: a descriptive study with a cluster randomized trial
- 2017
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Ingår i: BMC Geriatrics. - : BioMed Central (BMC). - 1471-2318. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: Extensive studies have shown that older people are negatively impacted by impaired eating and nutrition. The abilities to eat, enjoy food, and participate in social activities associated with meals are important aspects of health-related quality of life (HRQoL) and recovery after illness. This project aims to (i) describe and analyze relationships between oral health and oral HRQoL, swallowing ability, eating ability, and nutritional risk among older individuals admitted to short-term care; (ii) compare the perceptions that older individuals and staff report on care quality related to oral hygiene and eating; and (iii) study the feasibility and effects of a training program for people with impaired swallowing (i.e., dysphagia). Methods/Design: This project consists of two parts, which will be performed in five Swedish counties. It will include approximately 400 older individuals and 200 healthcare professionals. Part 1 is a cross-sectional, descriptive study of older people admitted to short-term care. Subjects will be assessed by trained professionals regarding oral health status, oral HRQoL, eating and nutritional risk, and swallowing ability. Swallowing ability will be measured with a teaspoon test and a swallowing capacity test (SCT). Furthermore, subjects and staff will complete a questionnaire regarding their perceptions of care quality. Part 2 is a cluster randomized intervention trial with controls. Older participants with dysphagia (i.e., SCT < 10 ml/s, measured in part 1) will be recruited consecutively to either the intervention or control group, depending on where they were admitted for short-term care. At baseline, all subjects will be assessed for oral health status, oral HRQoL, eating and nutritional risk, swallowing ability, and swallowing-related QoL. Then, the intervention group will receive 5 weeks of training with an oral screen for neuromuscular training focused on orofacial and pharyngeal muscles. After completing the intervention, and at six months post-intervention, all assessments will be repeated in both study groups. Discussion: The results will make important contributions to rehabilitation knowledge, including approaches for improving swallowing function, oral health, and food intake and for improving the quality of oral care for older people.
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| 31. |
- Lindqvist, Susanne, et al.
(författare)
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Factors associated with malnutrition among older people in Swedish short-term care : Poor oral health, dysphagia and mortality
- 2024
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Ingår i: International Journal of Dental Hygiene. - : John Wiley & Sons. - 1601-5029 .- 1601-5037.
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate the relationship between malnutrition and potential contributing factors such as poor oral health, dysphagia and mortality among older people in short-term care.Methods: This cross-sectional study is a part of the multidisciplinary multicentre project SOFIA (Swallowing function, Oral health and Food Intake in old Age), which includes older people (≥65 years) in 36 short-term care units in five regions of Sweden. Nutritional status was measured with version II of the Minimal Eating Observation and Nutrition Form (MEONF-II), oral health with the Revised Oral Assessment Guide (ROAG), dysphagia with a water swallow test, and the mortality rate was followed for 1 year. Data were analysed using descriptive analysis and logistic regression models to calculate odds ratios for the association between malnutrition and these factors.Results: Among the 391 participants, the median age was 84 years and 53.3% were women. Mortality rate was 25.1% within 1 year in the total group, and was higher among malnourished participants than among their well-nourished counterparts. Severe dysphagia (OR: 6.51, 95% CI: 2.40–17.68), poor oral health (OR: 5.73, 95% CI: 2.33–14.09) and female gender (OR: 2.2, 95% CI: 1.24–3.93) were independently associated with malnutrition.Conclusion: Mortality rate was higher among malnourished people than those who were well nourished. Severe dysphagia, poor oral health and female gender was predictors of malnutrition among older people in short-term care. These health risks should be given more attention in short-term care with early identification.
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| 32. |
- Lundman, Berit, et al.
(författare)
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Fatigue in elderly with chronic heart failure : an under-recognized symptom
- 2009
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Ingår i: Aging Health. - : Future Medicine Ltd. - 1745-509X .- 1745-5103. ; 5:5, s. 619-624
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Tidskriftsartikel (refereegranskat)abstract
- In this secondary analysis of interviews with people with chronic heart failure, we examine living with fatigue in terms of obstacles and opportunities on personal, systemic and societal levels. On a personal level, people report that their bodies force them to rest, and to give in to and make space in their lives for fatigue. The need for rest is strong, but resting and inactivity are also regarded as dangerous. The healthcare system provides assistance through home care and technical equipment. However, society imposes obstacles, such as a lack of services in the immediate surroundings that prevent living well. In conclusion, people with chronic heart failure can manage their lives on a personal level by means of selection, optimization and compensation, and the healthcare system can provide further support; however, on a societal level there is lack of resources for those suffering from fatigue due to chronic heart failure.
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| 33. |
- Nordmark, Eva, et al.
(författare)
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Development of lower limb range of motion from early childhood to adolescence in cerebral palsy: a population-based study
- 2009
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Ingår i: BMC Medicine. - : Springer Science and Business Media LLC. - 1741-7015. ; 7
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Tidskriftsartikel (refereegranskat)abstract
- Background: The decreasing range of joint motion caused by insufficient muscle length is a common problem in children with cerebral palsy (CP), often worsening with age. In 1994 a CP register and health care programme for children with CP was initiated in southern Sweden. The aim of this study was to analyse the development of the passive range of motion (ROM) in the lower limbs during all the growth periods in relation to gross motor function and CP subtype in the total population of children with CP. Methods: In total, 359 children with CP born during 1990-1999, living in the southernmost part of Sweden in the year during which they reached their third birthday and still living in the area in the year of their seventh birthday were analysed. The programme includes a continuous standardized follow-up with goniometric measurements of ROM in the lower limbs. The assessments are made by each child's local physiotherapist twice a year until 6 years of age, then once a year. In total, 5075 assessments from the CPUP database from 1994 to 1 January 2007 were analysed. Results: The study showed a decreasing mean range of motion over the period 2-14 years of age in all joints or muscles measured. The development of ROM varied according to GMFCS level and CP subtype. Conclusion: We found a decreasing ROM in children with CP from 2-14 years of age. This information is important for both the treatment and follow-up planning of the individual child as well as for the planning of health care programmes for all children with CP.
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| 34. |
- Persson-Bunke, Måns, et al.
(författare)
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Scoliosis in a Total Population of Children with Cerebral Palsy.
- 2012
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Ingår i: Spine. - 0362-2436. ; 37:12, s. 708-713
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Tidskriftsartikel (refereegranskat)abstract
- ABSTRACT: Study Design. Epidemiological total population study based on a prospective follow-up CP registry.Objective. To describe the prevalence of scoliosis in a total population of children with CP, to analyse the relation between scoliosis, gross motor function and CP subtype, and to describe the age at diagnosis of scoliosis.Summary of Background Data. Children with cerebral palsy (CP) have an increased risk of developing scoliosis. The reported incidence varies, partly due to different definitions and study groups. Knowledge of the prevalence and characteristics of scoliosis in an unselected group of children with different CP types and levels of function is important for health care planning and for analysing the risk in an individual child.Methods. A total population of 666 children with CP, aged 4-18 years 1 January 2008, followed with annual examinations in a healthcare program was analysed. Gross motor function (GMFCS level), CP subtype, age at clinical diagnosis of scoliosis, and the Cobb angle at the first radiographic examination were registered.Results. Of the 666 children 116 (17%) had mild and a further 76 (11%) had moderate or severe scoliosis based on clinical examination. Radiographic examination showed a Cobb angle >10 degrees in 54 (8%) children and >20 degrees in 45 (7%) children. The risk of developing scoliosis increased with GMFCS level and age. In most children the scoliosis was diagnosed after 8 years of age. Children in GMFCS level IV or V had a 50% risk of having moderate or severe scoliosis by the age of 18, while children in GMFCS level I or II had almost no risk.Conclusions. The incidence of scoliosis increased with GMFCS level and age. Observed variations related to CP subtype were confounded by GMFCS, reflecting the different distribution of GMFCS levels in the subtypes. Follow-up programs for early detection of scoliosis should be based on the child's GMFCS level and age.
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| 35. |
- Remberger, Mats, et al.
(författare)
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Improved survival after allogeneic hematopoietic stem cell transplantation in recent years : A single-center study
- 2011
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Ingår i: Biology of blood and marrow transplantation. - : Elsevier BV. - 1083-8791 .- 1523-6536. ; 17:11, s. 1688-1697
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Tidskriftsartikel (refereegranskat)abstract
- We analyzed the outcome of allogeneic hematopoietic stem cell transplantation (HSCT) over the past 2 decades. Between 1992 and 2009, 953 patients were treated with HSCT, mainly for a hematologic malignancy. They were divided according to 4 different time periods of treatment: 1992 to 1995, 1996 to 2000, 2001 to 2005, and 2006 to 2009. Over the years, many factors have changed considerably regarding patient age, diagnosis, disease stage, type of donor, stem cell source, genomic HLA typing, cell dose, type of conditioning, treatment of infections, use of granulocyte-colony stimulating factor (G-CSF), use of mesenchymal stem cells, use of cytotoxic T cells, and home care. When we compared the last period (2006-2009) with earlier periods, we found slower neutrophil engraftment, a higher incidence of acute graft-versus-host disease (aGVHD) of grades II-IV, and less chronic GVHD (cGHVD). The incidence of relapse was unchanged over the 4 periods (22%-25%). Overall survival (OS) and transplant-related mortality (TRM) improved significantly in the more recent periods, with the best results during the last period (2006-2009) and a 100-day TRM of 5.5%. This improvement was also apparent in a multivariate analysis. When correcting for differences between the 4 groups, the hazard ratio for mortality in the last period was 0.59 (95% confidence interval [CI]: 0.44-0.79; P < .001) and for TRM it was 0.63 (CI: 0.43-0.92; P = .02). This study shows that the combined efforts to improve outcome after HSCT have been very effective. Even though we now treat older patients with more advanced disease and use more alternative HLA nonidentical donors, OS and TRM have improved. The problem of relapse still has to be remedied. Thus, several different developments together have resulted in significantly lower TRM and improved survival after HSCT over the last few years.
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| 36. |
- Rodby-Bousquet, Elisabet, et al.
(författare)
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Postural asymmetries in young adults with cerebral palsy
- 2013
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 55:11, s. 1009-1015
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Tidskriftsartikel (refereegranskat)abstract
- AimThe purpose was to describe posture, ability to change position, and association between posture and contractures, hip dislocation, scoliosis, and pain in young adults with cerebral palsy (CP). MethodsCross-sectional data of 102 people (63 males, 39 females; age range 19-23y, median 21y) out of a total population with CP was analysed in relation to Gross Motor Function Classification System (GMFCS) levels I (n=38), II (n=21), III (n=13), IV (n=10), and V (n=20). The CP subtypes were unilateral spastic (n=26), bilateral spastic (n=45), ataxic (n=12), and dyskinetic CP (n=19). The Postural Ability Scale was used to assess posture. The relationship between posture and joint range of motion, hip dislocation, scoliosis, and pain was analysed using logistic regression and Spearman's correlation. ResultsAt GMFCS levels I to II, head and trunk asymmetries were most common; at GMFCS levels III to V postural asymmetries varied with position. The odds ratios (OR) for severe postural asymmetries were significantly higher for those with scoliosis (OR=33 sitting), limited hip extension (OR=39 supine), or limited knee extension (OR=37 standing). Postural asymmetries correlated to hip dislocations: supine (r(s)=0.48), sitting (r(s)=0.40), standing (r(s)=0.41), and inability to change position: supine (r(s)=0.60), sitting (r(s)=0.73), and standing (r(s)=0.64). ConclusionsPostural asymmetries were associated with scoliosis, hip dislocations, hip and knee contractures, and inability to change position.
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| 37. |
- Scott Duncan, Therese, et al.
(författare)
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Empowered patients and informal care-givers as partners? : A survey study of healthcare professionals' perceptions
- 2023
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Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals' attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. METHODS: A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. RESULTS: Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased inequality and additional workload were, however, mentioned. Patients' engagement in the development of clinical workplaces was seen as positive by the respondents, but few had own experience of such engagement and considered it difficult to be achieved. CONCLUSION: Overall positive attitudes of healthcare professionals are a fundamental prerequisite to the transition of the healthcare system recognizing empowered patients and informal caregivers as partners.
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| 38. |
- Scott Duncan, Therese, et al.
(författare)
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From Information Seekers to Innovators : Qualitative Analysis Describing Experiences of the Second Generation of E-Patients
- 2019
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Ingår i: Journal of Medical Internet Research. - Stockholm : JMIR Publications Inc.. - 1438-8871. ; 21:8
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative.OBJECTIVE: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care.METHODS: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset.RESULTS: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them.CONCLUSIONS: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.
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| 39. |
- Westbom, Lena, et al.
(författare)
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Cerebral palsy in a total population of 4-11 year olds in southern Sweden. Prevalence and distribution according to different CP classification systems.
- 2007
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Ingår i: BMC Pediatrics. - 1471-2431. ; 7
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Tidskriftsartikel (refereegranskat)abstract
- Background The aim of this study was to investigate the prevalence of cerebral palsy (CP) as well as to characterize the CP population, its participation in a secondary prevention programme (CPUP) and to validate the CPUP database. Methods The study population was born 1990–1997 and resident in Skåne/Blekinge on Jan 1st 2002. Multiple sources were used. Irrespective of earlier diagnoses, neuropaediatrician and other professional medical records were evaluated for all children at the child habilitation units. The CPUP database and diagnosis registers at hospital departments were searched for children with CP or psychomotor retardation, whose records were then evaluated. To enhance early prevention, CP/probable CP was searched for also in children below four years of age born 1998–2001. Results The prevalence of CP was 2.4/1,000 (95% CI 2.1–2.6) in children 4–11 years of age born in Sweden, excluding post-neonatally acquired CP. Children born abroad had a higher prevalence of CP with more severe functional limitations. In the total population, the prevalence of CP was 2.7/1,000 (95% CI 2.4–3.0) and 48% were GMFCS-level I (the mildest limitation of gross motor function). One third of the children with CP, who were born or had moved into the area after a previous study in 1998, were not in the CPUP database. The subtype classification in the CPUP database was adjusted in the case of every fifth child aged 4–7 years not previously reviewed. Conclusion The prevalence of CP and the subtype distribution did not differ from that reported in other studies, although the proportion of mild CP tended to be higher. The availability of a second opinion about the classification of CP/CP subtypes is necessary in order to keep a CP register valid, as well as an active search for undiagnosed CP among children with other impairments.
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| 40. |
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| 41. |
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| 42. |
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| 43. |
- Westbom, Lena, et al.
(författare)
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Ökad inflyttning av barn med cerebral pares - Likvärdig behandling har getts till utrikes och inrikes födda
- 2019
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Ingår i: Läkartidningen. - 0023-7205. ; 116
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Tidskriftsartikel (refereegranskat)abstract
- Cerebral palsy (CP) is present in about 200 children per birth-year cohort in Sweden. From 2001 to 2016, the annual number of immigrants to Sweden with CP enrolled at the (re)habilitation services increased from less than ten to 40-90 individuals per year; about 70 % came to Sweden as refugees. At a group level, children with CP born abroad had greater functional impairment than children born in Sweden, based on information in the Swedish national surveillance program and health care quality register for CP (CPUP). There was a significantly higher prevalence of CP, a greater proportion of children with bilateral spastic CP, and a lower proportion with unilateral spastic CP among the immigrants. The proportion of children in each gross motor function level treated with orthoses, standing frames, spinal brace or botulinum toxin was the same regardless of whether the child was born in Sweden or abroad. In summary, the (re)habilitation services and orthopedics have managed to provide a relatively large group of immigrants/refugees with CP with equal treatment compared to children born in Sweden.
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