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BACKGROUND: Acute lymphoblastic leukemia (ALL) is the most common malignancy in childhood, but the prognosis has remarkably improved over the last 50 years in high-income countries, and thus, there is a focus on long-term health outcomes following survival and how to best provide health care support to adult long-term survivors of childhood ALL to prevent and handle potential health problems. Digital health interventions are promising to deliver feasible health promotion and prevention programs. This is particularly relevant for ensuring long-term follow-up in cases where continuous contact with oncology care may be disrupted. Moreover, these interventions are beneficial in reaching geographically dispersed target groups and overcoming the time constraints of everyday life that often hinder participation in such programs. OBJECTIVE: This study aimed to fill the gaps in existing research on adult long-term survivors of childhood ALL and provide formative data that can inform the development of formalized follow-up services designed to meet the needs of these survivors in ways that align with their preferences for digital health interventions. METHODS: In this cross-sectional national study, adult survivors (aged ≥18 years) of childhood ALL for over 10 years after diagnosis were compared to their siblings in terms of mental and physical health-related factors, including sleep, stress, anxiety, and depression (Depression Anxiety and Stress Scale 21 [DASS-21]); several dimensions of fatigue (Multidimensional Fatigue Inventory 20 [MFI-20]); work ability (Work Ability Index); chronic pain; and prevalences of diabetes, cardiovascular disease, headache or migraine, and rheumatic disease. RESULTS: Overall, 426 of 855 eligible ALL survivors responded (mean age 30.9, SD 7.7 years), and they participated at an average of 24 (SD 6.9) years after ALL diagnosis. Siblings (n=135; mean age 31.5, SD 7.7 years) acted as controls. Sleep quality, sleep quantity, and mean work ability scores were significantly lower, and physical fatigue, reduced motivation, and reduced activity scores were higher in ALL survivors than in siblings. There were no significant differences between the groups in terms of BMI and prevalence of chronic pain, depression, anxiety, or stress. Physical and psychological complications were more frequent among adult ALL survivors who had received hematopoietic stem cell transplantation (HSCT) than among those who had not received HSCT. CONCLUSIONS: Our nationwide cross-sectional study addressed the scarcity of knowledge regarding the self-reported health outcomes of adult long-term survivors of childhood ALL. We highlighted significant disparities within this population and emphasized the potential of comprehensive digital interventions that target vitality, sleep quality, fatigue, and psychosocial well-being to enhance well-being and bolster the capacity for managing chronic health conditions in this target group. Such an intervention would align with the needs of this target group, which is a prerequisite for successfully incorporating technology into the daily lives of survivors of childhood ALL.
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PURPOSE: Adolescents and young adults (AYAs) diagnosed with cancer report psychological challenges and social isolation. Peer support has been shown to be a valuable resource for coping with these experiences. The aim of this study was through co-creation map the needs for peer support among AYA cancer patients in Sweden; and building on these results to develop and test a prototype of a digital tool for peer support. METHOD: The study was conducted in co-creation in a team consisting of AYA cancer patients, researchers, and a health tech company in Sweden. Through interviews the needs for emotional support were investigated. Based on this information, a prototype of a digital platform for peer support was co-created by the team. The platform was tested and evaluated through an online survey and follow-up interviews as part of the development process. RESULTS: AYAs expressed feelings of loneliness and a desire to process their cancer experiences with peers. A prerequisite for a digital platform for peer support was the assurance of a high degree of security. Piloting the prototype, 87% reported feeling secure, all participants found it valuable to interact with peers on the platform. In the follow-up interviews, AYAs emphasizing the need to simplify this process while maintaining stringent security measures. CONCLUSION: Co-creating tools for support together with AYAs ensures relevance and usability. A secure digital platform for peer support represents a complement to other existing forms of support. The presence of moderators was found to enhance security. Further development of the platform's log-in procedure is necessary.
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Neoplasias , Grupo Associado , Apoio Social , Humanos , Adolescente , Feminino , Masculino , Suécia , Adulto Jovem , Neoplasias/psicologia , Adulto , Adaptação Psicológica , Sobreviventes de Câncer/psicologia , Solidão/psicologiaRESUMO
PURPOSE: Adults who had acute lymphoblastic leukaemia (ALL) as children and were treated with allogeneic hematopoietic stem cell transplantation (aHSCT) may have been affected in their lives due to several long-term complications. From a clinical point of view, it is of interest to study how survivors describe their perceptions of their childhood today. The aim was therefore to describe how adults perceived their childhood and the influences of being treated for ALL with aHSCT as a child. METHOD: Semi-structured telephone interviews were undertaken with 18 adults who had been treated for childhood ALL with aHSCT and were included in a national cohort of childhood ALL survivors, diagnosed between 1985 and 2007 at an age between 0 and 17 years. A phenomenographic analysis was used. RESULTS: Three categories emerged: Feeling different, Feeling security and Feeling guilty. The informants felt that they had been different from other children but had felt security with the healthcare professionals and in care. They felt guilty because both their siblings' and parents' lives had been affected, but at the same time many perceived that they and their family members had become closer to one another. CONCLUSIONS: The results emphasised that adults who had been treated for childhood ALL with aHSCT were affected both in negative and positive ways during their childhood. This indicates the importance for early psychosocial care interventions directed to children during their treatment, but also the need for person-centred psychological care in long-term outpatient clinics.
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Sobreviventes de Câncer , Transplante de Células-Tronco Hematopoéticas , Leucemia-Linfoma Linfoblástico de Células Precursoras , Humanos , Transplante de Células-Tronco Hematopoéticas/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Feminino , Masculino , Adulto , Adolescente , Sobreviventes de Câncer/psicologia , Criança , Pessoa de Meia-Idade , Transplante Homólogo , Adulto Jovem , Pesquisa Qualitativa , Adaptação Psicológica , Pré-Escolar , Entrevistas como AssuntoRESUMO
INTRODUCTION: Tau aggregation into paired helical filaments and neurofibrillary tangles is characteristic of Alzheimer's disease (AD) and related disorders. However, biochemical assays for the quantification of soluble, earlier-stage tau aggregates are lacking. We describe an immunoassay that is selective for tau oligomers and related soluble aggregates over monomers. METHODS: A homogeneous (single-antibody) immunoassay was developed using a novel anti-tau monoclonal antibody and validated with recombinant and brain tissue-derived tau. RESULTS: The assay signals were concentration dependent for recombinant tau aggregates in solution but not monomers, and recognized peptides within, but not outside, the aggregation-prone microtubule binding region. The signals in inferior and middle frontal cortical tissue homogenates increased with neuropathologically determined Braak staging, and were higher in insoluble than soluble homogenized brain fractions. Autopsy-verified AD gave stronger signals than other neurodegenerative diseases. DISCUSSION: The quantitative oligomer/soluble aggregate-specific assay can identify soluble tau aggregates, including oligomers, from monomers in human and in vitro biospecimens. HIGHLIGHTS: The aggregation of tau to form fibrils and neurofibrillary tangles is a key feature of Alzheimer's disease. However, biochemical assays for the quantification of oligomers/soluble aggregated forms of tau are lacking. We developed a new assay that preferentially binds to soluble tau aggregates, including oligomers and fibrils, versus monomers. The assay signal increased corresponding to the total protein content, Braak staging, and insolubility of the sequentially homogenized brain tissue fractions in an autopsy-verified cohort. The assay recognized tau peptides containing the microtubule binding region but not those covering the N- or C-terminal regions only.
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Doença de Alzheimer , Humanos , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/metabolismo , Proteínas tau/metabolismo , Emaranhados Neurofibrilares , Imunoensaio , Peptídeos/metabolismoRESUMO
Background: Specific knowledge is required in pediatric oncology, and specialization of nurses has been identified as a priority. In Sweden, a national program in pediatric oncology nursing has been offered since 2003. The aim of this study was to gain knowledge of nurses' perceptions of the impact of this educational program. Methods: Eighty nurses who had completed the educational program in three cohorts (2012-2019) were invited to participate in this cross-sectional survey. An electronic study-specific questionnaire containing multiple-choice questions was used. Data were analyzed using descriptive statistics and correlation tests. Results: Fifty-nine (74%) nurses completed the survey, of whom 98% responded that they would recommend the program to a large/fairly large extent. At the time of the survey, 15 (25%) participants had left pediatric oncology care. Among the remaining 44, 31 (71%) of the nurses were working bedside, and 13 (42%) of these combined this with a special position (e.g., consultant nurse). The education resulted in career advancement, as the number of nurses with special positions increased following completion of the program, from 20% to 59%. The vast majority stated that the knowledge gained from the education contributed to increased confidence in interactions with the children/families. Discussion: Continuing education of nurses in pediatric oncology has an impact on career opportunities in clinical practice and contributes to nurses' confidence and professional work. However, education is not enough to retain competent nurses. Employers need to be aware of the role of the work environment, aspects of work-life balance and career paths.
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Neoplasias , Enfermeiras e Enfermeiros , Enfermagem Oncológica , Enfermagem Pediátrica , Criança , Humanos , Estudos Transversais , Oncologia , Enfermeiras e Enfermeiros/psicologia , Enfermagem Pediátrica/educação , Educação Continuada em Enfermagem , Enfermagem Oncológica/educação , Pesquisa em Avaliação de EnfermagemRESUMO
This study aims to identify the needs and wishes of childhood cancer long-term survivors for digitally mediated emotional peer support. Survivors of childhood cancer (six men, seven women) aged 19-33, participated in semi-structured interviews (November-December 2020). Age of diagnosis ranged from 1 to 13 years. The interviews lasted between 45 and 85 min. A thematic analysis was used to identify three themes for needs: processing long-term complications of cancer treatment, processing psychosocial health and meeting others who share similar experiences; and another three themes reflecting wishes: digital tools for connecting with people who had had similar experiences, different modes of communication and a safe place with varying degrees of anonymity. The findings emphasized the needs and wishes of childhood cancer survivors to meet others who had had similar experiences using a digital tool that offered a secure place, with options for a variety of communication methods and levels of anonymity. Peer support can serve as an important complement to professional psychosocial support.
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Sobreviventes de Câncer , Neoplasias , Adolescente , Adulto , Criança , Pré-Escolar , Comunicação , Feminino , Humanos , Lactente , Masculino , Neoplasias/terapia , Sobreviventes , Adulto JovemRESUMO
INTRODUCTION: Acute lymphoblastic leukaemia (ALL) is the most common form of cancer in children. Although treatment methods have improved and resulted in significant improvement of survival and reduction in late effects and late mortality risk, the health-related quality of life (HRQOL) of survivors might be affected. To introduce new interventions in clinical practice with the potential to support positive HRQOL outcomes, more knowledge is needed on how HRQOL in this group is constructed and stimulated. The purpose of this study is to investigate how HRQOL is affected in adults treated for paediatric ALL, in a long-term perspective and possible factors influencing this relationship. METHODS AND ANALYSIS: This cohort of young adult ALL survivors allows for investigations of factors influencing HRQOL outcomes on a national level. Eligible participants are obtained from the Swedish Childhood Cancer quality registry. Data collection includes both a follow-up of data collected in 2012 (n=224) and recruitment of new eligible participants to the cohort (n=601). The cohort will cover survivors of paediatric ALL, diagnosed between 1985 and 2007, at an age between 0 and 15 years. Data will be collected using validated, multidimensional, self-administered instruments, designed to measure HRQOL (SF-36), social support, sense of coherence and resilience. ETHICS AND DISSEMINATION: The study will be carried out in accordance with the ethics permit obtained from the Swedish ethics review authority (Dnr 2019-05181). Dissemination of study results will take place through research articles and reports to the national patient organisation and the national network for consultancy nurses for this target group and to the working group for the Swedish national long-term care programme for childhood cancer. Results will also reach practical application within the follow-up clinic for adult childhood cancer survivors at Sahlgrenska Hospital in Gothenburg.
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Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Estudos de Coortes , Estudos Transversais , Humanos , Lactente , Recém-Nascido , Estudos Longitudinais , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Adulto JovemRESUMO
Young adults (YAs) with cancer may have a need to develop strategies to cope with their worries about death. This brief report presents findings from a pilot study on YAs' needs with regard to such issues. An anonymous, web-based questionnaire was posted with a total of 83 cancer patients taking the questionnaire (71 females and 12 males). Almost half of the participants thought about death every day. Since most of the participants had ended their treatment, this would appear to show that matters related to death remain an important issue after the YAs' cancer treatment has ended. The results show a need for YAs to talk about death, either with professionals or with peers.
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Ansiedade , Morte , Neoplasias , Adaptação Psicológica , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Neoplasias/terapia , Projetos Piloto , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: The aim of this study was to understand patient-reported perception of participation in a population-based web-survey focusing on sensitive issues for adolescent and young adult cancer survivors. METHOD: A population-based web survey for adolescent and young adult cancer survivors including a matched control group. Adolescent and young adult cancer survivors from the population-based Swedish National Cancer Registry from four of the six register holders at Regional Cancer Centers in Sweden. Controls were randomly identified from the Swedish National Population registry, from the same register holders. RESULT: Of 729 eligible participants, 540 completed the survey i.e. 74% participation rate. The study population included 285 adolescent and young adult cancer survivors and 255 matched controls. None of the participants answered that the survey had a very negative impact on them and a minority of 43 (7.9%) of the 540 responded that they were mildly negatively affected by their participation in the study. There was a no significant difference between patients and controls regarding the negative effect of the participation (pâ¯=â¯0.29). Positive experiences of participating in the study were widely expressed and most participants (95%) found the study valuable. CONCLUSIONS: These findings suggest that the benefits clearly outweigh the risks when adolescent and young adult cancer survivors participate in surveys including sensitive and trauma-related aspects, given that the study design is ethically sound and participants are approached carefully. We also present a modified ethical protocol for epidemiological surveys on adolescents and young adult cancer survivors.
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Sobreviventes de Câncer/psicologia , Participação do Paciente/psicologia , Inquéritos e Questionários , Adolescente , Estudos de Casos e Controles , Feminino , Humanos , Masculino , Suécia , Adulto JovemRESUMO
PURPOSE: Previous research has established that treatments for cancer can result in short- and long-term effects on sexual function in adult cancer patients. The purpose was to investigate patient-reported physical and psychosexual complications in adolescents and young adults after they have undergone treatment for cancer. METHODS: In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors (15-29 years) and validated by professionals from oncology units, midwives, epidemiologists, and statisticians. The topics covered in the questionnaire were psychosocial health, body image, sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to adolescent and young adult cancer survivors and matched controls in Sweden. RESULTS: In this study, adolescent and young adult cancer survivors (15-29 years) showed low satisfaction regarding sexual function compared to controls (P < 0.01). Female adolescent and young adult cancer survivors had a statistically significant lower frequency of orgasm during sexual activity than the controls (P < 0.01). Male adolescent and young adult cancer survivors had statistically significant lower sexual desire than the controls (P = 0.04). CONCLUSIONS: We found that adolescent and young adult cancer survivors perceived themselves as being less satisfied with their sexual function than matched population-based controls. IMPLICATIONS FOR CANCER SURVIVORS: Adolescent and young adult cancer survivors need psychological rehabilitation support from the health care profession during and after cancer treatment to help them to reduce their reported poor sexual function to enhance a good sexual quality of life.
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Sobreviventes de Câncer , Comportamento Sexual/fisiologia , Adolescente , Adulto , Imagem Corporal , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Humanos , Masculino , Neoplasias/psicologia , Satisfação Pessoal , Qualidade de Vida , Comportamento Sexual/psicologia , Comportamento Sexual/estatística & dados numéricos , Disfunções Sexuais Psicogênicas/epidemiologia , Sexualidade/fisiologia , Sexualidade/psicologia , Sexualidade/estatística & dados numéricos , Inquéritos e Questionários , Suécia/epidemiologia , Adulto JovemRESUMO
OBJECTIVE: Cancer treatment may result in various effects that last long after treatment has been concluded. The purpose of this study was to explore to what extent scars affect adolescents and young adults postcancer treatment. METHODS: In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. Question development involved expert validation by professionals from oncology units, midwives, epidemiologists, and statisticians. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors. The topics covered in the questionnaire were as follows: psychosocial health, body image and sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to teenage and young adult cancer survivors and matched controls in Sweden. RESULTS: In this study, the relative risk of feeling less attractive due to scars was higher both for female cancer survivors RR 1.48, CI 1.05-2.08 and male cancer survivors RR 1.90, CI 1.15-3.13 compared to controls. The feeling of attractiveness was negatively related to the size of scars in both cancer and control groups. In a logistic regression analysis, significant associations were found between age, education, exercise, depression, and the feeling of low attractiveness due to scars. CONCLUSIONS: The results of this study provide a basis for care interventions for teenage and young adult cancer patients during and after cancer treatment. Further research is needed on care interventions to reduce, if possible, the impact of scars.
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Imagem Corporal/psicologia , Sobreviventes de Câncer/psicologia , Cicatriz/psicologia , Neoplasias/complicações , Aparência Física , Qualidade de Vida , Autoimagem , Adolescente , Adulto , Estudos de Casos e Controles , Cicatriz/etiologia , Feminino , Seguimentos , Humanos , Masculino , Neoplasias/epidemiologia , Neoplasias/terapia , Prognóstico , Estudos Retrospectivos , Inquéritos e Questionários , Suécia/epidemiologia , Adulto JovemRESUMO
PURPOSE: Approximately 600 teenagers and young adults, TYAs (ages 15-29), are newly diagnosed with cancer in Sweden every year and treated in many different units. The knowledge about TYAs is limited and there might be a need for a new approach in the care for this particular age group. The purpose of this study was to identify requirements TYAs in Sweden acknowledge as important to them. METHODS: 44 participants aged 15-29 who were treated at either pediatric or adult cancer units in Sweden, participated in focus group interviews. They were interviewed in groups based on whether they were treated in pediatric (14-18 years old) or adult units (18-29). The focus group interviews were recorded, transcribed, and analyzed using qualitative content analysis. RESULTS: Results of the study can be summarized into four categories: personal professional interaction, knowledge and participation, age-appropriate environment, and support. Important TYA care needs vary over time due to individual situations. The time line of the cancer experience can be described as a continuum; at diagnosis, during treatment, and in life-after cancer treatment. CONCLUSIONS: TYAs treated in Sweden have special needs that are not being satisfied, whether at pediatric or adult units. Areas that need closer attention are: close relatives' participation in the care, information on sex and fertility, age-appropriate social physical environments during treatment, and psychosocial support after treatment. In Sweden, there is a demand for increased knowledge on the special needs for TYAs in clinical practice.
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Atitude Frente a Saúde , Neoplasias/psicologia , Neoplasias/terapia , Estresse Psicológico/etiologia , Adolescente , Comportamento do Adolescente , Adulto , Fatores Etários , Feminino , Grupos Focais , Humanos , Masculino , Avaliação das Necessidades , Neoplasias/complicações , Neoplasias/diagnóstico , Relações Enfermeiro-Paciente , Relações Médico-Paciente , Psicologia , Pesquisa Qualitativa , Medição de Risco , Fatores Sexuais , Estresse Psicológico/fisiopatologia , Inquéritos e Questionários , Suécia , Serviços Urbanos de Saúde/organização & administração , Adulto JovemRESUMO
CONTEXT: Having a sense of security is vitally important to patients who have a limited life expectancy. OBJECTIVES: We sought to identify the factors associated with patients' sense of security during the palliative care period. METHODS: We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link). RESULTS: Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model. CONCLUSION: These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation.
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Cuidados Paliativos/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Família , Serviços de Assistência Domiciliar , Humanos , Entrevistas como Assunto , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Apoio Social , Estresse PsicológicoRESUMO
Niemann-Pick type C (NPC) is a progressive neurodegenerative lysosomal disease with altered cellular lipid trafficking. The metabolism of amyloid-ß (Aß) - previously mainly studied in Alzheimer's disease - has been suggested to be altered in NPC. Here we aimed to perform a detailed characterization of metabolic products from the amyloid precursor protein (APP) in NPC models and patients. We used multiple analytical technologies, including immunoassays and immunoprecipitation followed by mass spectrometry (IP-MS) to characterize Aß peptides and soluble APP fragments (sAPP-α/ß) in cell media from pharmacologically (U18666A) and genetically (NPC1 ( -/- ) ) induced NPC cell models, and cerebrospinal fluid (CSF) from NPC cats and human patients. The pattern of Aß peptides and sAPP-α/ß fragments in cell media was differently affected by NPC-phenotype induced by U18666A treatment and by NPC1 ( -/- ) genotype. U18666A treatment increased the secreted media levels of sAPP-α, AßX-40 and AßX-42 and reduced the levels of sAPP-ß, Aß1-40 and Aß1-42, while IP-MS showed increased relative levels of Aß5-38 and Aß5-40 in response to treatment. NPC1 ( -/- ) cells had reduced media levels of sAPP-α and Aß1-16, and increased levels of sAPP-ß. NPC cats had altered CSF distribution of Aß peptides compared with normal cats. Cats treated with the potential disease-modifying compound 2-hydroxypropyl-ß-cyclodextrin had increased relative levels of short Aß peptides including Aß1-16 compared with untreated cats. NPC patients receiving ß-cyclodextrin had reduced levels over time of CSF Aß1-42, AßX-38, AßX-40, AßX-42 and sAPP-ß, as well as reduced levels of the axonal damage markers tau and phosphorylated tau. We conclude that NPC models have altered Aß metabolism, but with differences across experimental systems, suggesting that NPC1-loss of function, such as in NPC1 ( -/- ) cells, or NPC1-dysfunction, seen in NPC patients and cats as well as in U18666A-treated cells, may cause subtle but different effects on APP degradation pathways. The preliminary findings from NPC cats suggest that treatment with cyclodextrin may have an impact on APP processing pathways. CSF Aß, sAPP and tau biomarkers were dynamically altered over time in human NPC patients.
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Peptídeos beta-Amiloides/metabolismo , Doença de Niemann-Pick Tipo C/metabolismo , 2-Hidroxipropil-beta-Ciclodextrina , Peptídeos beta-Amiloides/análise , Peptídeos beta-Amiloides/líquido cefalorraquidiano , Precursor de Proteína beta-Amiloide/metabolismo , Animais , Proteínas de Transporte/genética , Gatos , Linhagem Celular Tumoral , Criança , Pré-Escolar , Cromatografia Líquida de Alta Pressão , Feminino , Humanos , Imunoprecipitação , Lactente , Peptídeos e Proteínas de Sinalização Intracelular , Masculino , Glicoproteínas de Membrana/genética , Mutação de Sentido Incorreto/genética , Proteína C1 de Niemann-Pick , Doença de Niemann-Pick Tipo C/genética , Espectrometria de Massas por Ionização e Dessorção a Laser Assistida por Matriz , Espectrometria de Massas em Tandem , beta-Ciclodextrinas/uso terapêutico , Proteínas tau/metabolismoRESUMO
OBJECTIVE: To investigate consonant production at 12 and 18 months of age following early soft palate repair in infants with unilateral cleft lip and palate (UCLP), and to compare it with typically developing children without clefts. DESIGN: Randomized study with comparison group. PARTICIPANTS: Twenty Swedish infants born with UCLP and 21 without clefts (COMP) were included in a randomized trial of palatal surgery (Scandcleft project). Soft palate closure was completed at age 5 months; hard palate closure was performed in 11 of the infants with UCLP at 1 year of age (HPC) and was left open in nine (HPO). METHOD: Audio recordings at 12 months (UCLP â=â 9, COMP â=â 21) and at 18 months (UCLP â=â 18, COMP â=â 21) were phonetically transcribed. Consonant inventory, frequency of manner and place of articulation, true canonical babbling (TCB), and impact of hearing status were analyzed. RESULTS: At 12 months of age, all children had reached the stage of TCB. Mild hearing impairment was significantly correlated with fewer consonant types. A lower frequency of dentals and oral stops was found in the UCLP group than in the COMP group. However, the number of oral stops was high compared with what has been previously reported. CONCLUSIONS: Early soft palate closure seems to give a relatively high number of oral stops even with the hard palate unrepaired, although with significantly fewer dentals/alveolars than are seen in peers without clefts. Differences in consonant inventory were correlated with hearing function.
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Fenda Labial/cirurgia , Fissura Palatina/cirurgia , Fonação , Testes de Impedância Acústica , Pré-Escolar , Feminino , Transtornos da Audição/complicações , Humanos , Lactente , Masculino , Testes de Articulação da Fala , Suécia , Resultado do TratamentoRESUMO
Amyloid precursor protein (APP) can be proteolytically processed along two pathways, the amyloidogenic that leads to the formation of the 40-42 amino acid long Alzheimer-associated amyloid ß (Aß) peptide and the non-amyloidogenic in which APP is cut in the middle of the Aß domain thus precluding Aß formation. Using immunoprecipitation and mass spectrometry we have shown that Aß is present in cerebrospinal fluid (CSF) as several shorter isoforms in addition to Aß1-40 and Aß1-42. To address the question by which processing pathways these shorter isoforms arise, we have developed a cell model that accurately reflects the Aß isoform pattern in CSF. Using this model, we determined changes in the Aß isoform pattern induced by α-, ß-, and γ-secretase inhibitor treatment. All isoforms longer than and including Aß1-17 were γ-secretase dependent whereas shorter isoforms were γ-secretase independent. These shorter isoforms, including Aß1-14 and Aß1-15, were reduced by treatment with α- and ß-secretase inhibitors, which suggests the existence of a third and previously unknown APP processing pathway involving concerted cleavages of APP by α- and ß-secretase.
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Precursor de Proteína beta-Amiloide/metabolismo , Transdução de Sinais/fisiologia , Secretases da Proteína Precursora do Amiloide/farmacologia , Peptídeos beta-Amiloides/efeitos dos fármacos , Peptídeos beta-Amiloides/metabolismo , Precursor de Proteína beta-Amiloide/efeitos dos fármacos , Precursor de Proteína beta-Amiloide/genética , Linhagem Celular Transformada , Linhagem Celular Tumoral , Inibidores Enzimáticos/farmacologia , Ensaio de Imunoadsorção Enzimática/métodos , Humanos , Imunoprecipitação/métodos , Espectrometria de Massas/métodos , Neuroblastoma/patologia , Isoformas de Proteínas/metabolismo , Transdução de Sinais/efeitos dos fármacos , TransfecçãoRESUMO
GOALS OF WORK: Staff members in palliative home care play an important role in supporting bereaved family members. The aim of this study was to explore staff members' perspectives on providing such support. MATERIAL AND METHODS: Staff members in six units responded (n=120; response rate 58%) to a postal questionnaire with Likert-type and open-ended questions. The responses were analyzed using statistics and manifest content analysis. MAIN RESULTS: None of the respondents stated that bereavement follow-up was "most often difficult," 23% "most often rather difficult," 52.5% "most often rather easy," and 12.5% "most often easy." Apart from a tendency for age to be linked to perceived difficulty, there were no apparent patterns. Bereavement follow-up was a positive opportunity to support the family member's coping with their bereavement and to get feedback on the palliative care provided. Critical aspects concerned the question of whose needs actually were being met at bereavement follow-up, i.e., the staff members' needs for getting feedback on the care provided versus the risk of burdening the family members' by reminding them of the deceased's dying trajectory. Aspects that negatively influenced the staff members' experiences were complex and related, e.g., to the family member's dissatisfaction with the care provided, to the staff member's perceived lack of competence, and to the staff member's relationship to the family member. CONCLUSIONS: Bereavement follow-up was perceived as a rewarding conclusion to the relationship with the family member. The findings suggest that meaning-based coping might be an appropriate framework when understanding staff members' experiences with providing bereavement follow-up.
Assuntos
Atitude do Pessoal de Saúde , Luto , Cuidados Paliativos/métodos , Relações Profissional-Família , Adaptação Psicológica , Adulto , Idoso , Competência Clínica , Estudos Transversais , Feminino , Serviços de Assistência Domiciliar/organização & administração , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto JovemRESUMO
Much is unknown regarding the regulation of Alzheimer-related amyloid-beta protein precursor (AbetaPP)-processing in the human central nervous system. It has been hypothesized that amyloidogenic AbetaPP-processing preferentially occurs in the regulated secretory pathway of neurons. To test this hypothesis we looked for correlations of AbetaPP-derived molecules in cerebrospinal fluid (CSF) with chromogranin (Cg) derived peptides, representing the regulated secretion. Patients with Alzheimer's disease (AD, N=32), multiple sclerosis (MS, N=50), and healthy controls (N= 70) were enrolled. CSF was analyzed for the amyloid peptides Abeta1-42, Abetax-42, Abetax-40, Abetax-38, alpha-cleaved soluble AbetaPP (sAbetaPPalpha), beta-cleaved soluble AbetaPP (sAbetaPPbeta), and peptides derived from CgB and SgII (Secretogranin-II, CgC). We investigated CSF levels of the protease BACE1, which processes AbetaPP into Abeta, in relation to Cg-levels. Finally, we measured Cg levels in cell media from untreated and BACE1-inhibited SH-SY5Y human neuroblastoma cells. CSF Cg levels correlated to sAbetaPP and Abeta peptides in AD, MS, and controls, and to CSF BACE1. Cell medium from BACE1-inhibited cells had decreased CgB levels. These results suggest that a large part of AbetaPP in the human central nervous system is processed in the regulated secretory pathway of neurons.
Assuntos
Amiloide/metabolismo , Química Encefálica/fisiologia , Cromograninas/metabolismo , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença de Alzheimer/líquido cefalorraquidiano , Doença de Alzheimer/metabolismo , Amiloide/líquido cefalorraquidiano , Secretases da Proteína Precursora do Amiloide/líquido cefalorraquidiano , Peptídeos beta-Amiloides/líquido cefalorraquidiano , Peptídeos beta-Amiloides/metabolismo , Precursor de Proteína beta-Amiloide/líquido cefalorraquidiano , Precursor de Proteína beta-Amiloide/metabolismo , Ácido Aspártico Endopeptidases/líquido cefalorraquidiano , Biomarcadores , Vias Biossintéticas , Linhagem Celular Tumoral , Cromograninas/líquido cefalorraquidiano , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/líquido cefalorraquidiano , Esclerose Múltipla/metabolismo , Adulto JovemRESUMO
The aim of the study was to describe interactions within the family and between them and professionals on a routine visit at a paediatric oncology outpatient clinic where the visiting child was likely to be fearful. Observations were performed. Data were analysed by qualitative content analysis. The behaviours most frequently observed as expressing fear were being quiet, withdrawn or providing detailed descriptions of experiences. Within the theme ;Recognition of the fear', an attentive attitude to the fear was traced; fear was confirmed and cooperation was seen. Although many efforts were made to meet the fear, this was not always successful. Within the theme ;Lack of attention to the fear', the fear was not in focus due to parental worries and concerns about the child's health, and organizational disturbances. The results can serve as a basis for collegial reflections of how to handle fear in children with cancer.
Assuntos
Atitude Frente a Saúde , Medo/psicologia , Neoplasias/psicologia , Pacientes Ambulatoriais/psicologia , Relações Profissional-Família , Relações Profissional-Paciente , Adaptação Psicológica , Adolescente , Adulto , Assistência Ambulatorial/métodos , Assistência Ambulatorial/psicologia , Atitude do Pessoal de Saúde , Criança , Pré-Escolar , Empatia , Feminino , Humanos , Masculino , Pesquisa Metodológica em Enfermagem , Pais/psicologia , Recursos Humanos em Hospital/psicologia , Papel Profissional/psicologia , Psicologia da Criança , Pesquisa Qualitativa , Inquéritos e Questionários , SuéciaRESUMO
Palliative care does not end with the death of the patient, and many palliative care services offer specific follow-up services for the bereaved. The aims of this study were to quantitate perceived bereavement needs and to qualitatively describe these needs. The study design was cross-sectional and targeted family members three to nine months after the patient's death. Two hundred and forty-eight family members responded (response rate 66%) to a postal questionnaire with Likert-type and open-ended questions. The responses to the open-ended items were analyzed with manifest content analysis, and the quantitative part was analyzed with descriptive statistics. The analysis showed that about half of the family members expressed a need for bereavement follow-up. A majority favored a personal meeting, preferably in their own home, with the staff member who had had the most contact with the patient and the family. The family members wanted to talk about what had happened during the palliative phase (e.g., if the patient had suffered or not), and also about their present situation, their feelings of loneliness, and the future. The follow-up procedure made the family member experience a feeling of being recognized as a person with their own needs and was also valuable with regard to the family members' feelings of guilt. The findings are discussed in relation to narrative theory, meaning-based coping, and the dual process model of coping with bereavement, and designing follow-up procedures.