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1.
Aust J Rural Health ; 32(4): 611-616, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39192494

ABSTRACT

Rural communities have unique mental health needs and challenges which are often related to the uniqueness of the community itself. On a per-capita basis, the investment in rural mental health research is far less than that in urban communities. Added to this, rural communities are often at risk of researchers, based in large urban universities, visiting, conducting the research with minimal engagement with local stakeholders and limited understanding of the community's social-service-environmental context. Often this research leaves no visible benefit to the community with respect to increased knowledge, resources or community capacity. This commentary is based on the insights of a panel of authors from 9 countries, each with extensive experience of rural mental health research and work. And it seeks to stimulate the discourse on responsible rural mental health practice. The aim of this commentary is to provide a reference on research practice for novice and experienced researchers on rural mental health research and practice, to assist policymakers, government and funding bodies to establish appropriate standards and guidelines for rural mental health research, and support rural communities to advocate for equity of funding and sustainable research as they engage with researchers, funders and governments. The 10 standards in this declaration will help guide researchers toward research that is beneficial to rural communities and also help develop the local community's research capability, which ultimately will serve to enhance the mental health and well-being of rural communities.


Subject(s)
Mental Health , Humans , Rural Population , Rural Health Services/standards , Rural Health Services/organization & administration , Health Services Research , Mental Health Services/standards , Mental Health Services/organization & administration , Rural Health/standards
2.
Sci Rep ; 14(1): 1753, 2024 01 19.
Article in English | MEDLINE | ID: mdl-38243053

ABSTRACT

The marine littoral earthworm Pontodrilus litoralis (Grube, 1855) is widely distributed and is reported as a single species. This study utilized an integrative taxonomic approach based upon morphological examination, phylogenetic reconstruction, and molecular species delimitation, to test whether the taxon is a single species or a species complex. For this, a total of 114 P. litoralis specimens collected from North America, Africa, Australia and Oceania, Europe and Asia were used. The phylogenetic analyses revealed deeply divergent mitochondrial lineages and a high level of genetic diversity among P. litoralis populations. Both single and multi-locus species delimitation analyses yielded several molecular operational taxonomic units. Therefore, due to the homogeneity of morphological characteristics, it is likely that the morphospecies P. litoralis is a complex of four or more cryptic species, suggesting that more sampling is required and that the population structure genetic data and gene flow need to be investigated.


Subject(s)
Oligochaeta , Animals , Phylogeny , Oligochaeta/genetics , Mitochondria , Asia , Australia
3.
Front Psychiatry ; 14: 1059406, 2023.
Article in English | MEDLINE | ID: mdl-36824668

ABSTRACT

In research and among clinicians, the focus has shifted from mainly symptom reduction and increasing functionality to a more recovery-oriented focus. Although there are instruments measuring recovery, there has been a lack of instruments sensitive enough to measure the quality of life for people with severe mental health disorders. Therefore, this study aimed to obtain a Swedish version of the Recovering Quality of Life (ReQoL) questionnaire adhering to best practice guidelines using various steps of translation, linguistic validation, and cognitive debriefing. The cognitive debriefing was conducted with seven participants, and all felt the items in the questionnaire were relevant to their health, apprehensible, and easy to complete. However, some issues were raised regarding wording and the concepts behind certain items. All feedback was considered, and some items were revised in response to criticism after continuous discussions. A Swedish version of ReQoL now exists, and although there is a need for ReQoL in different clinical research settings in Sweden, further research is required to psychometrically test the construct validity as well as reliability of the Swedish version in Sweden.

4.
Scand J Occup Ther ; 30(8): 1368-1382, 2023 Nov.
Article in English | MEDLINE | ID: mdl-35786150

ABSTRACT

BACKGROUND: Young and adult users of electric wheelchairs (EWs) describe how EWs have personal, functional, emotional, and symbolic values and are considered by some to be part of the self. AIM: The aim of this study was to increase our understanding of how occupational identity is constructed in the daily practices of EW users. MATERIAL AND METHODS: Context-based, in-depth oral stories and filmed sequences of daily practice enactments of persons who have used an EW since childhood were the basis for the narrative analysis. FINDINGS: The findings elucidate how the informants enact and tell about their identity-development in response to daily and relational practices, and its relevance to the informant's sense of self, belonging, competence, life-prospects, conduct, and awareness of shifting values, and this was likewise demonstrated in different appearances and roles related to social recognition. A model illustrating the findings is proposed. CONCLUSIONS AND SIGNIFICANCE: Contextual values and exploring experiences, such as possibilities to develop competences and roles, along with encountering social recognition, but also hindering regulations and adversities, influence the development of occupational identities. Findings in this study can contribute to increased understanding, conscious political decisions, as well as a more person-centred approach within healthcare.


Subject(s)
Disabled Persons , Wheelchairs , Adult , Humans , Child , Surveys and Questionnaires , Disabled Persons/psychology
5.
Front Psychiatry ; 13: 954068, 2022.
Article in English | MEDLINE | ID: mdl-36051549

ABSTRACT

This paper describes the initial phases of the design and development of the Everyday Life Rehabilitation (ELR) intervention, and it presents preliminary findings on usefulness and implementation aspects derived from an ongoing larger trial exploring the effect, cost-effectiveness, and usefulness of ELR. ELR is a model designed to meet the absence of meaningful activities and challenges with integrated, activity- and recovery-oriented rehabilitation in sheltered and supported housing facilities for persons with extensive psychiatric disabilities. The aim of the present study was to examine early experiences of implementing the ELR model from the perspectives of managers, housing staff, and occupational therapists. The paper will sum up preliminary findings based on process data included in an internal pilot prior to a full-scale pragmatic clustered RCT. Four Swedish municipalities with 19 housing facility units were involved and provided process data for the study. Thematic analysis were applied. The informants perceived the methodology to be well suited to the target group and context and to contribute to positive changes in participants' lives. The web-based training was also experienced as relevant and easily accessible to staff, as well as elements of collegial learning and feedback. However, they reported that their municipalities lacked basic conditions for making the whole concept work in such a short time. The ELR is overall perceived as useful, but experiences also make complex difficulties visible regarding integrated, coordinated rehabilitation and organizational readiness. Based on findings, a recommendation on basic prerequisites will be added to the ELR guidance for leadership and management. Clinical trial registration: [ClinicalTrials.gov, 24 September 2021], identifier [NCT05056415].

6.
Trials ; 23(1): 657, 2022 Aug 15.
Article in English | MEDLINE | ID: mdl-35971130

ABSTRACT

BACKGROUND: People with severe psychiatric disabilities and impaired autonomy, living in sheltered or supported housing facilities, often lead sedentary, solitary lives indoors and have significantly poorer health than others in the population. Meaningful everyday activities are important for the recovery towards an enrichening, agentic, social, and hopeful everyday life. The Everyday Life Rehabilitation (ELR) model-a person-centred activity- and recovery-oriented intervention-has shown positive outcomes in feasibility studies, and thus a randomised controlled trial (RCT) is required to establish the effectiveness of ELR, along with calculations of cost-effectiveness. METHODS: The ELR-RCT is a pragmatic, two-parallel-armed cluster RCT evaluating the effect and cost-effectiveness of using ELR from two measurement points over 6 months (pre-post intervention) and in three waves over 3 years. The primary outcome is recovering quality of life (ReQoL) at 6 months, and the secondary outcome is self-perceived recovery and daily functioning (RAS-DS) at 6 months. Additionally, Goal Attainment Scaling (GAS) will be used for the intervention group. Power analysis has been conducted for primary outcome measure. The first wave will include an internal pilot, to be evaluated after 6 months, used as basis for decisions on updating the required sample size and any other need for adaptations before continuing with the full-scale RCT in the second and third wave. All municipalities within a geographic area in northern Sweden, with a minimum of one sheltered or supported housing facility for people with severe psychiatric or neuropsychiatric disability, including access to occupational therapy, will be enrolled. Participants will be block-randomised to receive ELR plus treatment as usual (TAU) or TAU alone for a control period. The control group will thereafter receive delayed ELR. Occupational therapists and housing staff will receive an educational package, manuals, and tools, as well as reflections with colleagues during the intervention period. Housing managers will receive questions for monthly follow-up and coaching with staff. DISCUSSION: This is a protocol for both an internal pilot and full trial of the first RCT study using the ELR intervention model in sheltered or supported housing facilities, evaluating the effects together with cost-effectiveness. TRIAL REGISTRATION: ClinicalTrials.gov NCT05056415. Registered on 24 September 2021.


Subject(s)
Housing , Occupational Therapy , Cost-Benefit Analysis , Feasibility Studies , Humans , Pragmatic Clinical Trials as Topic , Quality of Life/psychology , Randomized Controlled Trials as Topic
7.
Nurs Philos ; 23(3): e12398, 2022 Jul.
Article in English | MEDLINE | ID: mdl-35703467

ABSTRACT

This article suggests a shift in focus from stories as verbal accounts to narrative interpretation of the every day as a resource for achieving person-centred health and social care. The aim is to explore Ricoeur's notion of narrative and action, as expressed in his arguments on a threefold mimesis process, using this as a grounding for the use of narration to achieve person-centredness in health and social care practice. This focus emerged from discussions on this matter at the IPONS conference in Gothenburg, 2021. Based on philosophical resources from Ricoeur's notions of narrative and action developed in his arguments on a threefold mimesis process, we propose a wider use of stories in health and social care practices. We suggest expanding from only focusing on verbal accounts to focusing on narrative as a human way to interpret and make sense of everyday life and circumstances and to communicate possible meanings. We discuss how such complementary focus can be a resource in getting patients involved and collaborating in their health and social care and thereby help develop person-centred practices.


Subject(s)
Narration , Social Support , Humans , Patient-Centered Care
8.
J Endod ; 43(6): 857-863, 2017 Jun.
Article in English | MEDLINE | ID: mdl-28389075

ABSTRACT

INTRODUCTION: The aim of this blind, in vivo, randomized controlled trial was to evaluate the antibacterial effect of Nd:YAG laser irradiation in endodontic treatment of single-rooted teeth with apical periodontitis. The hypothesis was that mechanical enlargement of the root canal and Nd:YAG laser irradiation would yield more negative bacterial samples than conventional treatment. METHODS: Forty-one patients (45 teeth) were allocated to the laser (n = 22) or control (n = 23) group. The teeth in the laser group were instrumented, irrigated with saline, and irradiated with Nd:YAG laser according to a standard protocol. The teeth in the control group were similarly instrumented but irrigated with 1% unbuffered sodium hypochlorite and 15% EDTA solution. Bacterial samples were taken before and after treatment, blinded, and immediately sent for culturing and analysis. RESULTS: The initial bacterial samples were positive in 20 of 22 teeth in the laser group and 18 of 23 (P = .414) in the control group. After the initial treatment, negative bacterial samples were found in 11 teeth in the laser group and 13 (P = .768) in the control group. After 2 to 4 days with no antibacterial dressing in the root canals, 5 teeth in the laser group and 9 (P = .337) in the control group yielded negative bacterial samples. CONCLUSIONS: After intervention, neither the test group nor the control group yielded predictable negative bacterial samples. Thus, the results failed to verify the hypothesis that Nd:YAG laser irradiation would yield significantly more negative bacterial samples than conventional irrigation with 1% unbuffered sodium hypochlorite solution.


Subject(s)
Lasers, Solid-State/therapeutic use , Periapical Periodontitis/surgery , Aged , Bacteria/radiation effects , Disinfectants/administration & dosage , Disinfectants/therapeutic use , Female , Humans , Male , Middle Aged , Periapical Periodontitis/microbiology , Sodium Hypochlorite/administration & dosage , Sodium Hypochlorite/therapeutic use , Therapeutic Irrigation/methods
9.
Disabil Rehabil Assist Technol ; 11(5): 385-94, 2016.
Article in English | MEDLINE | ID: mdl-25270614

ABSTRACT

PURPOSE: To explore the experiences of using an electric wheelchair in daily living. METHODS: Fifteen participants, eight women and seven men, living in different parts of a Nordic country were interviewed. The interviews were conducted in the home or at the workplace. Open-ended questions were used. The data were collected and analyzed according to the grounded theory. RESULTS: Analysis resulted in one core category: "Integrating the electric wheelchair - a manifold process", describing a process commencing from initial resistance against use of an electric wheelchair, to acceptance with various extent of integration. Six categories emerged that represent this core process: incorporating the electric wheelchair into the self-identity process, calculating functional consequences, encountering the reactions of others, facing duality in movability, using proactive strategies, and being at the mercy of the system. Findings indicate that the integration process is complex and manifold. Practical, personal, and social dimensions were intertwined and significantly involved. CONCLUSIONS: Integrating an electric wheelchair is a process closely connected to symbolic value, usability, community mobility and identity. These aspects should be considered in the production, prescription, and adaptation processes. Implications for Rehabilitation Integrating an electric wheelchair is a process closely connected to symbolic value, usability, community mobility, and identity. These aspects should be considered in the wheelchair production, prescription, and adaptation processes.


Subject(s)
Activities of Daily Living/psychology , Disabled Persons/psychology , Disabled Persons/rehabilitation , Mobility Limitation , Wheelchairs , Adult , Aged , Electric Power Supplies , Female , Humans , Male , Middle Aged , Patient Satisfaction , Qualitative Research , Social Participation/psychology
10.
Knee ; 22(6): 559-64, 2015 Dec.
Article in English | MEDLINE | ID: mdl-26051483

ABSTRACT

BACKGROUND: It is unclear what factors contribute to knee joint effusion after anterior cruciate ligament (ACL) injury and reconstruction. Knee homeostasis after injury and surgery is crucial for rehabilitation and knee well-being. We examined if effusion was affected by post-operative bracing, and if patients with effusion fit into a common profile. METHODS: Patients were randomized to wearing or not wearing a post-operative brace for three weeks after ACL reconstruction with semitendinosus-gracilis tendons. Knee joint effusion was detected by computed tomography in 60 patients (22 women), before and three and 12 months after surgery. Joint effusion, clinical and subjective tests were analyzed. RESULTS: This is the first prospective, randomized study on post-operative bracing for patients with a semitendinosus-gracilis graft showed that bracing had no effect on three-months presence of joint effusion. Excessive joint effusion was present in 68% of the patients three months after surgery and was associated to prior meniscus injury (p=0.05) and higher prior Tegner activity level (p=0.006). We found a positive association between longer time from injury to surgery and joint effusion three months post-operatively (rho=0.29, p<0.05). Twelve months post-operatively, joint effusion had diminished to baseline levels. Subjective scores and activity levels were lower for women. Three-months joint effusion predicted lower final outcome scores in women. CONCLUSION: Prior meniscus injury and pre-injury Tegner activity levels are predictive significant variables for excessive knee joint effusion after ACL reconstruction. Post-operative bracing had no effect. A larger clinical cohort is needed to confirm findings of this logistic regression.


Subject(s)
Anterior Cruciate Ligament Injuries , Anterior Cruciate Ligament Reconstruction/methods , Braces , Knee Injuries/rehabilitation , Knee Joint/surgery , Postoperative Care/methods , Adolescent , Adult , Anterior Cruciate Ligament/surgery , Female , Follow-Up Studies , Humans , Knee Injuries/surgery , Lysholm Knee Score , Male , Middle Aged , Prospective Studies , Time Factors , Treatment Outcome , Young Adult
11.
BMC Musculoskelet Disord ; 14: 150, 2013 Apr 29.
Article in English | MEDLINE | ID: mdl-23628130

ABSTRACT

BACKGROUND: Anterior cruciate ligament (ACL) tears are common, functionally disabling, and predispose to subsequent injuries and early onset of osteoarthritis in the knee. Injuries result in muscular atrophy and impaired muscular activation. To optimize surgical methods and rehabilitation strategies, knowledge of the effects of ACL injuries on muscles size and function is needed. Asymmetry due to limb dominance implies that the effect of ACL-injury might be different in right-sided and left-sided injuries which, should be taken in account when evaluating the effect of an injury. Evaluation of the effects of injuries is usually made with the contralateral leg as control. The aim of this study is to describe the effect of ACL-injuries on thigh muscle size and also to analyze feasibility of using contralateral limb as control. METHODS: Sixty-two patients scheduled to undergo ACL reconstruction were examined with computed tomography (CT). Muscle cross sectional area (CSA) was recorded for quadriceps, hamstrings, gracilis and sartorius 15 cm above the knee joint. Comparisons were made between the injured and non-injured side and between individuals separated by gender and side of injury. Comparisons were also made for patients with or without concomitant meniscal tear, for patients differing in time between injury and examinations and for patients with different level of physical activity after the injury. RESULTS: Quadriceps CSA was 5% smaller on the injured side. There was an indication that the muscles of the right thigh were generally bigger than those of the left thigh. The difference between the injured and the non-injured side was larger for right-sided injuries than for left-sided. There was also a greater difference in semimembranosus for women than for men. There were no differences related to meniscal injury, time since injury or physical activity. CONCLUSION: The use of contralateral leg for evaluating the effect of ACL-injury is often the only available alternative but our study indicates that the difference in CSA between injured and non-injured side does not necessarily reflect the true degree of atrophy, as there are side differences both in muscle size in general and in the effect of an ACL-injury on muscle size.


Subject(s)
Anterior Cruciate Ligament , Athletic Injuries/pathology , Cartilage, Articular , Knee Injuries/pathology , Muscle, Skeletal/pathology , Muscular Atrophy/pathology , Adolescent , Adult , Anterior Cruciate Ligament/diagnostic imaging , Anterior Cruciate Ligament/pathology , Anterior Cruciate Ligament Injuries , Athletic Injuries/complications , Athletic Injuries/diagnostic imaging , Cartilage, Articular/diagnostic imaging , Cartilage, Articular/injuries , Cartilage, Articular/pathology , Female , Humans , Knee Injuries/complications , Knee Injuries/diagnostic imaging , Knee Joint/diagnostic imaging , Knee Joint/pathology , Lacerations , Male , Menisci, Tibial/diagnostic imaging , Menisci, Tibial/immunology , Menisci, Tibial/pathology , Middle Aged , Muscular Atrophy/complications , Muscular Atrophy/diagnostic imaging , Radiography , Thigh , Young Adult
12.
Qual Health Res ; 23(6): 728-40, 2013 Jun.
Article in English | MEDLINE | ID: mdl-23515296

ABSTRACT

As part of a larger study, we offered Everyday Life Rehabilitation (ELR) as a model for integrated occupational therapy in sheltered or supported housing facilities, to enable meaningful daily occupations for people with psychiatric disabilities. Our aim with this study was to understand how participants made sense of their occupational transformations in the context of their everyday life and life history. We carried out qualitative interviews and field observations with 16 participants with psychosis-related disorders. We used narrative analysis and disclosed stories of "rediscovering agency," referring to occupational and identity transformations. A parallel outcome study has shown positive results for participants, and by using narrative inquiry we contribute with a deeper understanding of the meaning making of their transformations and mechanisms of the intervention; i.e., hope, extended value of reaching goals, reentering the majority world, transparency of process, and attunement to the individual. The findings support the use of the ELR intervention.


Subject(s)
Group Homes/organization & administration , Occupational Therapy/methods , Psychotic Disorders/rehabilitation , Schizophrenia/rehabilitation , Activities of Daily Living , Adult , Aged , Female , Group Homes/standards , Home Care Services , Humans , Interviews as Topic , Male , Middle Aged , Observation , Occupational Therapy/psychology , Patient Satisfaction , Professional-Patient Relations , Psychotic Disorders/psychology , Qualitative Research , Schizophrenic Psychology , Sweden
13.
Int J Soc Psychiatry ; 57(3): 284-99, 2011 May.
Article in English | MEDLINE | ID: mdl-20068023

ABSTRACT

BACKGROUND: The study illuminated how persons with psychiatric disabilities experienced the processes of change in a residential context. MATERIAL: Qualitative interviews with residents living in supported housing were conducted and analyzed using constant comparative analysis. DISCUSSION: Residential conditions appear to provide a complex structure that facilitates rehabilitative interactions, in which 'progressive tensions' arise between opposing values, such as authentic versus artificial, and independence versus dependence, both of which are important in the process of change. CONCLUSIONS: A client-centred approach could be taken further if clients are engaged in productive discussions about challenging these 'progressive tensions'. Awareness of the meaning of home also emerged as central.


Subject(s)
Borderline Personality Disorder/rehabilitation , Group Homes , Independent Living/psychology , Patient Discharge , Rehabilitation, Vocational , Schizophrenia/rehabilitation , Schizophrenic Psychology , Social Environment , Adult , Borderline Personality Disorder/psychology , Female , Humans , Male , Occupational Therapy , Public Assistance , Social Work, Psychiatric , Sweden
14.
Knee Surg Sports Traumatol Arthrosc ; 18(1): 106-14, 2010 Jan.
Article in English | MEDLINE | ID: mdl-19693489

ABSTRACT

The purpose was to investigate whether deviations in gait parameters or muscular activity patterns can be detected in the injured and healthy leg of chronic ACL-deficient subjects. Sixteen medium-level active chronic ACL-deficient patients classified as "copers" (injury duration: 12-240 months, age 17-52 years) and 15 healthy subjects (age 20-33 years) walked at self-selected speed along a 10-m runway with a level force-plate. Gait specific data, ground reaction forces, knee and ankle angles, and EMG were documented. Knee laxity was increased and the functional scores (Lysholm, KOOS) decreased in the ACL- deficient subjects, whereas the Tegner activity level score was normal. Gait speed, stride length and stance time did not differ between ACL-deficient subjects and controls. Ground reaction forces (magnitude and times), as well as knee and ankle angles at selected points during stance and swing phases were normal in the ACL-deficient subjects compared to controls. The total duration of m. tibialis anterior (TA) activity was longer in ACL-deficient subjects than in controls (ACL-deficient injured leg vs. controls, P < 0.05). In addition, the onset of lateral gastrocnemius (LG) muscle activity occurred earlier in ACL-deficient patients (P < 0.03), resulting in a TA-LG cocontraction in the ACL-deficient but not in the control group. In conclusion, chronic, medium-level active ACL-deficient patients showed abnormalities in muscular activity patterns during gait compared to control subjects, whereas there were no detectable changes in ground reaction forces and 3D kinematic data. As the aberrant muscular activity pattern may be of importance for an even gait, it is proposed that EMG recordings may give additional information in the evaluation and rehabilitation of gait when the ACL is absent.


Subject(s)
Anterior Cruciate Ligament Injuries , Gait , Knee Joint/physiopathology , Muscle, Skeletal/physiopathology , Adolescent , Adult , Biomechanical Phenomena , Case-Control Studies , Electromyography , Female , Humans , Joint Instability/diagnosis , Male , Middle Aged , Muscle Contraction , Young Adult
15.
J Pediatr Surg ; 43(10): 1928-31, 2008 Oct.
Article in English | MEDLINE | ID: mdl-18926235

ABSTRACT

Increased pulmonary vascular resistance causing pulmonary artery hypertension is a major problem in the treatment of congenital diaphragmatic hernia with a strong association to mortality. We here report a patient with intractable pulmonary hypertension at 4 weeks of age unresponsive to conventional treatment. After administration of the platelet-derived growth factor (PDGF) receptor antagonist imatinib, pulmonary artery pressure gradually decreased to acceptable levels and the patient's clinical condition gradually improved.


Subject(s)
Hernia, Diaphragmatic/complications , Hypertension, Pulmonary/drug therapy , Piperazines/therapeutic use , Protein Kinase Inhibitors/therapeutic use , Pyrimidines/therapeutic use , Receptors, Platelet-Derived Growth Factor/antagonists & inhibitors , Benzamides , Bosentan , Combined Modality Therapy , Continuous Positive Airway Pressure , Diuretics/therapeutic use , Enteral Nutrition , Extracorporeal Membrane Oxygenation , Heart Failure/etiology , Hernia, Diaphragmatic/surgery , Hernias, Diaphragmatic, Congenital , Humans , Hypertension, Pulmonary/etiology , Hypoxia/drug therapy , Hypoxia/etiology , Hypoxia/therapy , Iloprost/therapeutic use , Imatinib Mesylate , Infant, Newborn , Male , Nitric Oxide/therapeutic use , Purines/therapeutic use , Sildenafil Citrate , Sulfonamides/therapeutic use , Sulfones/therapeutic use
16.
Acta Paediatr ; 97(8): 1108-12, 2008 Aug.
Article in English | MEDLINE | ID: mdl-18452566

ABSTRACT

AIM: To follow-up six children with severe mucopolysaccharidosis type IH, Hurler syndrome, who were treated before 24 months of age with haematopoietic stem cell transplantation. METHODS: In Sweden, during the last 10-year period, six consecutive children born with severe mucopolysaccharidoses type IH have been successfully transplanted using matched unrelated donors between the ages of 11 and 24 months (mean age 18 months). Three children received intravenous enzyme replacement therapy once a week, from diagnosis until engraftment of their bone marrow. RESULT: Two children developed chimerism and a progressive increase in recipient cells and later received a successful re-transplantation. One to two years after transplantation the children demonstrated some developmental delays in cognitive function. Latterly this was followed by normalization. Orthopaedic operations on the spine and hips and carpal tunnel syndrome were still required following transplantation. Cardiac valve involvement remained progressive in the children. CONCLUSION: The outcome of six children in this study confirms that early haematopoietic stem cell transplantation in mucopolysaccharidosis type I, Hurler syndrome, preserves an affected child's mental ability. Consequently, it is essential that clinical recognition and early diagnosis take place, providing an additional challenge to paediatricians treating this condition.


Subject(s)
Hematopoietic Stem Cell Transplantation/methods , Mucopolysaccharidosis I/diagnosis , Mucopolysaccharidosis I/therapy , Child , Child, Preschool , Chimerism , Cognition Disorders/epidemiology , Cognition Disorders/prevention & control , Early Diagnosis , Female , Genotype , Humans , Hyperopia , Infant , Male , Mucopolysaccharidosis I/genetics , Point Mutation/genetics , Sweden , Time Factors
17.
Patient Educ Couns ; 66(3): 353-60, 2007 Jun.
Article in English | MEDLINE | ID: mdl-17317077

ABSTRACT

OBJECTIVE: To explore main features of pain drawings and concepts about illness in patients seeking help for "half-body" complaints at two primary health care centres in different parts of Sweden. METHODS: A qualitative study of pain-drawings and tape-recorded semi-structured interviews analysed by qualitative methods in 20 patients (4 men, 16 women, aged 37-68 years) from five health centers. Three of them were native Swedes and 17 were foreign-born. RESULTS: All complained of pain in a left (three-fourth) or right (one-fourth) body-half, mainly in front. Some had general pain with a "worse side". Many said they had pain only on the "edges" and outlined the margins on the side of pain, but excluded the "face". Posterior drawings often received a line in the middle dividing the body in lateral halves. Pain was referred to as a "growing" thing - ("It") - that could spread ("jump") to the other side, grow and eventually paralyse them. "It" was believed as caused by body imbalance, natural factors or supernatural forces. CONCLUSION: "Half-body" pain was an expression that in main was used by middle-aged patients to denote an initially superficial and frontal one-sided pain that could spread and become dangerous to their health. PRACTICE IMPLICATIONS: Patients with half-body complaints should be taken seriously and met with respect by doctors and other health care personnel, particularly in cross-cultural consultations.


Subject(s)
Attitude to Health/ethnology , Human Body , Pain Measurement/methods , Pain/ethnology , Adult , Aged , Communication , Cultural Diversity , Emigration and Immigration , Female , Humans , Iran/ethnology , Iraq/ethnology , Male , Middle Aged , Narration , Pain/diagnosis , Pain Measurement/psychology , Pakistan/ethnology , Psychophysiologic Disorders/ethnology , Qualitative Research , Residence Characteristics , Semantics , Surveys and Questionnaires , Sweden , Turkey/ethnology
18.
Respir Res ; 7: 79, 2006 May 20.
Article in English | MEDLINE | ID: mdl-16712736

ABSTRACT

The objective of this study was to investigate if long-term clearance from small airways is dependent on normal ciliary function. Six young adults with primary ciliary dyskinesia (PCD) inhaled 111 Indium labelled Teflon particles of 4.2 microm geometric and 6.2 microm aerodynamic diameter with an extremely slow inhalation flow, 0.05 L/s. The inhalation method deposits particles mainly in the small conducting airways. Lung retention was measured immediately after inhalation and at four occasions up to 21 days after inhalation. Results were compared with data from ten healthy controls. For additional comparison three of the PCD subjects also inhaled the test particles with normal inhalation flow, 0.5 L/s, providing a more central deposition. The lung retention at 24 h in % of lung deposition (Ret24) was higher (p < 0.001) in the PCD subjects, 79 % (95% Confidence Interval, 67.6;90.6), compared to 49% (42.3;55.5) in the healthy controls. There was a significant clearance after 24 h both in the PCD subjects and in the healthy controls with equivalent clearance. The mean Ret24 with slow inhalation flow was 73.9 +/- 1.9% compared to 68.9 +/- 7.5% with normal inhalation flow in the three PCD subjects exposed twice. During day 7-21 the three PCD subjects exposed twice cleared 9% with normal flow, probably representing predominantly alveolar clearance, compared to 19% with slow inhalation flow, probably representing mainly small airway clearance. This study shows that despite ciliary dysfunction, clearance continues in the small airways beyond 24 h. There are apparently additional clearance mechanisms present in the small airways.


Subject(s)
Bronchi/physiopathology , Kartagener Syndrome/physiopathology , Mucociliary Clearance , Adolescent , Adult , Female , Humans , Indium Radioisotopes , Male , Particle Size , Polytetrafluoroethylene , Pulmonary Alveoli/physiopathology , Respiratory Function Tests , Time Factors
19.
Respir Med ; 98(1): 9-16, 2004 Jan.
Article in English | MEDLINE | ID: mdl-14959808

ABSTRACT

When the expected effect of an inhaled drug is not achieved, the cause could be poor inhalation technique and consequently a low pulmonary dose. A simple in vivo test to evaluate the pulmonary dose would be a benefit. This study evaluates the relative and systemic bioavailability following inhalation of nebulized sodium cromoglycate (SCG) in healthy subjects. Blood samples were collected during 240 min and urine was collected in two portions, up to 6 h post-inhalation. Two exposures were performed and comparisons based on the quantification of drug in plasma and urine by a high-performance liquid chromatography (HPLC) procedure were done. In one of the exposures, a pulmonary function test was performed to study if an expected effect of increased absorption could be detected. There was a good correlation between the two exposures shown in the plasma concentrations, but not in the urine analyses. The forced exhaled volume manoeuvres were associated with a higher Cmax and plasma concentrations up to 60 min post-inhalation (P<0.01). This effect was not detected in the urine analyses. We conclude that this pharmacokinetic method with inhaled SCG and plasma analyses could be used to evaluate individual inhalation technique. The HPLC method used was rapid and had adequate sensitivity.


Subject(s)
Anti-Asthmatic Agents/blood , Cromolyn Sodium/blood , Drug Monitoring/methods , Lung/metabolism , Administration, Inhalation , Adult , Anti-Asthmatic Agents/administration & dosage , Anti-Asthmatic Agents/urine , Area Under Curve , Biological Availability , Chromatography, High Pressure Liquid/methods , Cromolyn Sodium/administration & dosage , Cromolyn Sodium/urine , Drug Administration Schedule , Female , Forced Expiratory Volume/drug effects , Humans , Male , Nebulizers and Vaporizers
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