| 1. |
- Hübel, Marie, et al.
(författare)
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Quality of Life of an Adolescent Boy with Autism and Intellectual Impairment, a unique housing situation.
- 2006
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Ingår i: International Journal of Disability, Community and Rehabilitation. - 1703-3381. ; 5:1
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Tidskriftsartikel (refereegranskat)abstract
- Abstract in UndeterminedIndividuals with the diagnosis of autism need well-functioning home environment to make progress and achieve an acceptable level of quality of life (QoL). Long-term mapping of the daily life of individual persons with disabilities with the purpose of understanding their living situation is rare. The present study deals with the QoL of an adolescent boy with autism and intellectual impairment and living in an apartment of his own together with four caregivers, during a period of three and a half years. This single case study reports the qualitative analysis of the caregivers' open diary and repeated interviews capturing the boy's daily life and explores the staff's experiences of the boy's living situation. The results describe how important aspects for the QoL such as communication, activities, mood and regulation, were influenced by the boy's home care environment. The staff paid most attention to the boy's mood and meal-related situations and seemed to be unaware of the importance of improving communication. Findings in the diary and the interviews indicate that the boy seemed to regress in important skills and abilities despite the efforts of the staff.
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| 2. |
- Hübel, Marie, et al.
(författare)
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Staff's Collaborative work process with an adolescent boy with autism and intellectual disability in a community-based sheltered housing
- 2008
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Ingår i: Scandinavian Journal of Disability Research. - : Stockholm University Press. - 1501-7419 .- 1745-3011. ; 10:1, s. 49-66
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this single-case study was to describe the staff's collaborative work process for a period of 3.5 years caring for an adolescent boy with autism and intellectual disabilities living in an apartment of his own together with his caregivers. The longitudinal data included the staff's (two men and two women) common open diary, repeated individual interviews and focus group interviews. Detailed content analysis of the diary and the interviews indicated that the staff's perceptions of their pedagogical work, teamwork and work conditions changed from a positive to a largely negative view, appearing to affect the pedagogical strategies adopted. Also, it became visible that the unique work situation, involving a lack of actual goals, feedback and pedagogical supervision may have negatively affected the collaborative work process and the staff's effort to establish structure and consensus in the pedagogical work.
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| 3. |
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| 4. |
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| 5. |
- Lenhoff, Stig, et al.
(författare)
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Intensive therapy for multiple myeloma in patients younger than 60 years. Long-term results focusing on the effect of the degree of response on survival and relapse pattern after transplantation
- 2006
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Ingår i: Haematologica. - 0390-6078 .- 1592-8721. ; 91:9, s. 1228-1233
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Tidskriftsartikel (refereegranskat)abstract
- Background and Objectives. From 1994 to 1997 we conducted a population-based, prospective study on intensive therapy in newly diagnosed symptomatic myeloma patients younger than 60 years, comparing their survival to that of a conventionally treated historic population. Long-term results are presented, including the impact of the degree of response on survival and relapse pattern after transplantation. Design and Methods. The prospective population was formed of 397 patients and the historic population of 313 patients. Both populations were calculated to comprise more than 75% of the expected number of new cases. Results. After a median follow-up of 7 years survival was longer in the prospective population than in the historic one (median 60 versus 39 months; p=0.0002). When comparing only patients eligible for intensive therapy the median survival was 63 versus 44 months (p < 0.0001). Attaining a complete response was associated with prolonged event-free survival but not overall survival. The pattern of relapse after transplantation was heterogeneous but could be divided into four major groups; insidious, classical, plasmacytoma form and transformed disease. The median survival after relapse was 29 months. The relapse pattern and time to relapse predicted outcome. Patients relapsing with an insidious or classical form of disease with skeletal events only, or after a long lasting first response were likely to respond well to conventional salvage therapy. In contrast, relapse with multiple symptoms, transformed disease or a short duration of first response implied bad prognosis. Interpretation and conclusions. The relapse pattern after autologous transplantation is heterogeneous and response to salvage therapy is variable. The degree of response and event-free survival after transplantation are not reliable surrogate markers for survival.
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| 6. |
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| 7. |
- Olsson-Strömberg, Ulla, et al.
(författare)
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Successful mobilization of Ph-negative blood stem cells with intensive chemotherapy + G-CSF in patients with chronic myelogenous leukemia in first chronic phase
- 2006
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Ingår i: Leukemia and Lymphoma. - : Informa UK Limited. - 1042-8194 .- 1029-2403. ; 47:9, s. 1768-73
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to investigate the feasibility of mobilizing Philadelphia chromosome negative (Ph-) blood stem cells (BSC) with intensive chemotherapy and lenograstim (G-CSF) in patients with CML in first chronic phase (CP1). During 1994-1999 12 centers included 37 patients <56 years. All patients received 6 months' IFN, stopping at median 36 (1-290) days prior to the mobilization chemotherapy. All received one cycle of daunorubicin 50 mg/m2 and 1 hour infusion on days 1-3, and cytarabine (ara-C) 200 mg/m2 24 hours' i.v. infusion on days 1-7 (DA) followed by G-CSF 526 microg s.c. once daily from day 8 after the start of chemotherapy. Leukaphereses were initiated when the number of CD 34+ cells was >5/microl blood. Patients mobilizing poorly could receive a 4-day cycle of chemotherapy with mitoxantrone 12 mg/m2/day and 1 hour i.v infusion, etoposide 100 mg/m2/day and 1 hour i.v. infusion and ara-C 1 g/m2/twice a day with 2 hours' i.v infusion (MEA) or a second DA, followed by G-CSF 526 microg s.c once daily from day 8 after the start of chemotherapy. Twenty-seven patients received one cycle of chemotherapy and G-CSF, whereas 10 were mobilized twice. Twenty-three patients (62%) were successfully (MNC >3.5 x 10(8)/kg, CFU-GM >1.0 x 10(4)/kg, CD34+ cells >2.0 x 10(6)/kg and no Ph+ cells in the apheresis product) [n = 16] or partially successfully (as defined above but 1-34% Ph+ cells in the apheresis product) [n = 7] mobilized. There was no mortality during the mobilization procedure. Twenty-one/23 patients subsequently underwent auto-SCT. The time with PMN <0.5 x 10(9)/l was 10 (range 7-49) and with platelets <20 x 10(9)/l was also 10 (2-173) days. There was no transplant related mortality. The estimated 5-year overall survival after auto-SCT was 68% (95% CI 47 - 90%), with a median follow-up time of 5.2 years.We conclude that in a significant proportion of patients with CML in CP 1, intensive chemotherapy combined with G-CSF mobilizes Ph- BSC sufficient for use in auto-SCT.
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| 8. |
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| 9. |
- Simonsson, Bengt, et al.
(författare)
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Intensive treatment and stem cell transplantation in chronic myelogenous leukemia : long-term follow-up
- 2005
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Ingår i: Acta Haematologica. - : S. Karger AG. - 0001-5792 .- 1421-9662. ; 113:3, s. 155-162
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Tidskriftsartikel (refereegranskat)abstract
- In the present study we combined interferon (IFN) and hydroxyurea (HU) treatment, intensive chemotherapy and autologous stem cell transplantation (SCT) in newly diagnosed chronic myelogenous leukemia patients aged below 56 years, not eligible for allogeneic SCT. Patients who had an HLA-identical sibling donor and no contraindication went for an allogeneic SCT (related donor, RD). After diagnosis, patients not allotransplanted received HU and IFN to keep WBC and platelet counts low. After 6 months patients with Ph-positive cells still present in the bone marrow received 1–3 courses of intensive chemotherapy. Those who became Ph-negative after IFN + HU or after 1–3 chemotherapy courses underwent autologous SCT. Some patients with poor cytogenetic response were allotransplanted with an unrelated donor (URD). IFN + HU reduced the percentage of Ph-positive metaphases in 56% of patients, and 1 patient became Ph-negative. After one or two intensive cytotherapies 86 and 88% had a Ph reduction, and 34 and 40% became Ph-negative, respectively. In patients receiving a third intensive chemotherapy 92% achieved a Ph reduction and 8% became Ph-negative. The median survival after auto-SCT (n = 46) was 7.5 years. The chance of remaining Ph-negative for up to 10 years after autologous SCT was around 20%. The overall survival for allo-SCT RD (n = 91) and URD (n = 28) was almost the same, i.e. ≈60% at 10 years. The median survival for all 251 patients registered was 8 years (historical controls 3.5 years). The role of the treatment schedule presented in the imatinib era is discussed.
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