Living with myotonic dystrophy; what can be learned from couples? a qualitative study

Contains fulltext : 96062.pdf (publisher's version ) (Open Access)BACKGROUND: Myotonic dystrophy type 1 (MD1) is one of the most prevalent neuromuscular diseases, yet very little is known about how MD1 affects the lives of couples and how they themselves manage individually and together. To better match health care to their problems, concerns and needs, it is important to understand their perspective of living with this hereditary, systemic disease. METHODS: A qualitative study was carried out with a purposive sample of five middle-aged couples, including three men and two women with MD1 and their partners. Fifteen in-depth interviews with persons with MD1, with their partners and with both of them as a couple took place in the homes of the couples in two cities and three villages in the Netherlands in 2009. Results : People with MD1 associate this progressive, neuromuscular condition with decreasing abilities, describing physical, cognitive and psychosocial barriers to everyday activities and social participation. Partners highlighted the increasing care giving burden, giving directions and using reminders to compensate for the lack of initiative and avoidant behaviour due to MD1. Couples portrayed the dilemmas and frustrations of renegotiating roles and responsibilities; stressing the importance of achieving a balance between individual and shared activities. All participants experienced a lack of understanding from relatives, friends, and society, including health care, leading to withdrawal and isolation. Health care was perceived as fragmentary, with specialists focusing on specific aspects of the disease rather than seeking to understand the implications of the systemic disorder on daily life. CONCLUSIONS: Learning from these couples has resulted in recommendations that challenge the tendency to treat MD1 as a condition with primarily physical impairments. It is vital to listen to couples, to elicit the impact of MD1, as a multisystem disorder that influences every aspect of their life together. Couple management, supporting the self-management skills of both partners is proposed as a way of reducing the mismatch between health services and health needs

Componentes da Produção de Forragem em Pastagens dos Capins Tanzânia e Mombaça Adubadas com Quatro Doses de NPK Components of Herbage Production of Tanzania and Mombaça Pastures Fertilized with Four Doses of NPK

O trabalho foi conduzido na FCAV-Unesp, em Jaboticabal-SP, para avaliar os efeitos de quatro doses combinadas de NPK sobre os componentes da produção e das perdas de matéria seca (MS) em pastagens dos cultivares Tanzânia e Mombaça de Panicum maximum Jacq., manejadas com 28 dias de descanso e com altura média de 30 cm de resíduo pós-pastejo. As avaliações foram realizadas em parcelas de 96 m² segundo um fatorial 2 (cultivares) x 4 (doses de NPK), em blocos completos ao acaso, com três repetições. As adubações estudadas corresponderam ao decréscimo em 30 % e aos acréscimos em 30 e 60 % de uma dose "padrão" com 145; 21,6 e 180 kg/ha de N, P2O5 e K2O, respectivamente (referente a 1,2; a 0,08; e a 1,2 % de N, P e K na MS, com produção estimada em 12000 kg/ha). A MS verde (MSV) em pré-pastejo e no resíduo aumentou linearmente com a adubação, com maiores valores obtidos para o cv. Mombaça (9183 e 5227 kg/ha, respectivamente) do que para o cv. Tanzânia (6275 e 3808 kg/ha, respectivamente). A participação de lâminas foliares na MSV em pré-pastejo foi menor no cv. Tanzânia (51 %) do que no cv. Mombaça (54 %). A densidade de perfilhos não variou com a adubação. O aumento do peso de perfilho com a elevação das doses de NPK resultou em maiores produções de MSV. A MS senescida (média de 3108 kg/ha de MS) não diferiu entre cultivares. De modo geral, quanto maior a dose de adubo aplicado, maiores foram a taxa de acúmulo diário de MSV e a MSV perdida por pisoteio. O cv. Mombaça apresentou maior potencial de resposta à adubação do que o cv. Tanzânia, com taxas de lotação de 6,2 e 4,0 UA/ha, respectivamente.<br>The experiment was conducted at the FCAV-Unesp, Jaboticabal-SP, to evaluate the effects of the fertilization with four doses of NPK on the components of dry matter (DM) and losses by trampling of two cultivars of Panicum maximum Jacq. (Tanzania and Mombaça) under grazing, having a rest period of 28 days and an average height of residue of 30 cm. A complete randomized block design was used with treatments arranged in a 2 x 4 factorial with three field replications. The fertilization doses corresponded to the reduction of 30 % and the increase of 30 and 60% in relation to a standard dose of 145; 21.6; and 180 kg/ha of N, P2O5, and K2O, respectively (assuming the contents of 1.2, 0.08, and 1.2% of N, P, and K in DM, to reach an estimated DM production of 12000 kg/ha). There was a linear effect of fertilization doses on green DM (GDM) before and after grazing. The cv. Mombaça exhibited higher herbage mass before and after grazing (9183 and 5279 kg/ha of GDM, respectively) than the cv. Tanzania (6275 and 3808 kg/ha of GDM, respectively). The proportion of leaf blade in the GDM available was lower in the cv. Tanzania (51%) than in the cv. Mombaça (54 %). The tiller density was not affected by the fertilization doses. However, the increase in tiller weight due to fertilizer doses was responsible for the higher GDM production. The senesced DM did not vary between cultivars, with a mean value of 3108 kg/ha. In general, higher rates of fertilization resulted in greater GDM accumulation rate and higher losses of GDM by trampling. The cv. Mombaça showed a greater response potential to fertilization than the cv. Tanzania with stocking rates of 6.2 and 4.0 UA/ha, respectively

Assessment of treatment-induced female sexual morbidity in oncology: is this a part of routine medical follow-up after radical pelvic radiotherapy?

Background:Oncology follow-up has traditionally prioritised disease surveillance and the assessment and management of symptoms associated with cancer and its treatment. Over the past decade, the focus on late effects of treatment has increased, particularly those that have an adverse effect on long-term function and quality of life. The aim of this research was to explore factors that influence the identification of treatment-induced female sexual difficulties in routine oncology follow-up after radical pelvic radiotherapy.Methods:A structured observation schedule was used to systematically record topics discussed in 69 radiotherapy follow-up consultations observed over a 5-month period.Results:Analysis suggests that physical toxicity assessment focused on bowel (81%) and bladder (70%) symptoms. Vaginal toxicity was discussed less frequently (42%) and sexual issues were explored in only 25% of consultations. Formal recording of radiation toxicity through assessment questionnaires was limited to patients participating in clinical trials. Surveillance activity and the management of active physical symptoms predominated and psychosocial issues were addressed in only 42% of consultations.Interpretation:Female sexual morbidity after pelvic radiotherapy remains a neglected aspect of routine follow-up and cancer survivorship. Developments in both individual practice and service provision are necessary if the identification and management of treatment-induced female sexual difficulties is to be improved

Genetically modified crops and aquatic ecosystems: considerations for environmental risk assessment and non-target organism testing

Environmental risk assessments (ERA) support regulatory decisions for the commercial cultivation of genetically modified (GM) crops. The ERA for terrestrial agroecosystems is well-developed, whereas guidance for ERA of GM crops in aquatic ecosystems is not as well-defined. The purpose of this document is to demonstrate how comprehensive problem formulation can be used to develop a conceptual model and to identify potential exposure pathways, using Bacillus thuringiensis (Bt) maize as a case study. Within problem formulation, the insecticidal trait, the crop, the receiving environment, and protection goals were characterized, and a conceptual model was developed to identify routes through which aquatic organisms may be exposed to insecticidal proteins in maize tissue. Following a tiered approach for exposure assessment, worst-case exposures were estimated using standardized models, and factors mitigating exposure were described. Based on exposure estimates, shredders were identified as the functional group most likely to be exposed to insecticidal proteins. However, even using worst-case assumptions, the exposure of shredders to Bt maize was low and studies supporting the current risk assessments were deemed adequate. Determining if early tier toxicity studies are necessary to inform the risk assessment for a specific GM crop should be done on a case by case basis, and should be guided by thorough problem formulation and exposure assessment. The processes used to develop the Bt maize case study are intended to serve as a model for performing risk assessments on future traits and crops. -® 2011 The&nbsp;Author(s