587 resultados para later life


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Background Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL. Methods The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations. Conclusions This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

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Background Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life. Methods A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven. Results Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence; (b) having something to do, and; (c) the importance of social interaction. Conclusions The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.

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The American Association of Australasian Literary Studies (AAALS) Annual Conference, Forth Worth, Texas, 9–11 April 2015. The dark fluidity of Melbourne suburbia in Sonya Hartnett’s Butterfly Sonya Hartnett’s Butterfly (2009) is a fictional account of the suburban family life of the Coyles in 1980’s outer suburban Melbourne written from the perspective of teenager Plum Coyle. The Coyle family at first glance appear to be living a textbook example of the suburban lifestyle developed from the 19th century and sustained well into the twentieth century, in which housing design and gender roles were clearly defined and “connected with a normative heterosexuality” (Johnson 2000: 94). The Australian suburban space is also well documented as a place where people often have to contend with oppressive rigid social and cultural ideals (ie Rowse 1978, Johnson 1993, Turnbull 2008, and Flew 2011). There is a tendency to group “suburb” as one monolithic space but this paper will argue that Hartnett exposes the dark fluidity and the complexity of the term, just as she reveals that despite or perhaps because of the planned nature of suburbia, the lives that people live are often just as complex.

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The ability to estimate the expected Remaining Useful Life (RUL) is critical to reduce maintenance costs, operational downtime and safety hazards. In most industries, reliability analysis is based on the Reliability Centred Maintenance (RCM) and lifetime distribution models. In these models, the lifetime of an asset is estimated using failure time data; however, statistically sufficient failure time data are often difficult to attain in practice due to the fixed time-based replacement and the small population of identical assets. When condition indicator data are available in addition to failure time data, one of the alternate approaches to the traditional reliability models is the Condition-Based Maintenance (CBM). The covariate-based hazard modelling is one of CBM approaches. There are a number of covariate-based hazard models; however, little study has been conducted to evaluate the performance of these models in asset life prediction using various condition indicators and data availability. This paper reviews two covariate-based hazard models, Proportional Hazard Model (PHM) and Proportional Covariate Model (PCM). To assess these models’ performance, the expected RUL is compared to the actual RUL. Outcomes demonstrate that both models achieve convincingly good results in RUL prediction; however, PCM has smaller absolute prediction error. In addition, PHM shows over-smoothing tendency compared to PCM in sudden changes of condition data. Moreover, the case studies show PCM is not being biased in the case of small sample size.

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Purpose Improved survival for men with prostate cancer has led to increased attention to factors influencing quality of life (QOL). As protein levels of vascular endothelial growth factor (VEGF) and insulin-like growth factor 1 (IGF-1) have been reported to be associated with QOL in people with cancer, we sought to identify whether single-nucleotide polymorphisms (SNPs) of these genes were associated with QOL in men with prostate cancer. Methods Multiple linear regression of two data sets (including approximately 750 men newly diagnosed with prostate cancer and 550 men from the general population) was used to investigate SNPs of VEGF and IGF-1 (10 SNPs in total) for associations with QOL (measured by the SF-36v2 health survey). Results Men with prostate cancer who carried the minor ‘T’ allele for IGF-1 SNP rs35767 had higher mean Role-Physical scale scores (≥0.3 SD) compared to non-carriers (p < 0.05). While this association was not identified in men from the general population, one IGF-1 SNP rs7965399 was associated with higher mean Bodily Pain scale scores in men from the general population that was not found in men with prostate cancer. Men from the general population who carried the rare ‘C’ allele had higher mean Bodily Pain scale scores (≥0.3 SD) than non-carriers (p < 0.05). Conclusions Through identifying SNPs that are associated with QOL in men with prostate cancer and men from the general population, this study adds to the mapping of complex interrelationships that influence QOL and suggests a role for IGF-I in physical QOL outcomes. Future research may identify biomarkers associated with increased risk of poor QOL that could assist in the provision of pre-emptive support for those identified at risk.

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In this chapter we use Bernstein’s (2000) model of pedagogic rights to examine the learning experiences for non-Indigenous teachers in two reconciliation projects. In the context within which we write, reconciliation is the process of establishing a culture of mutual respect between Aboriginal and Torres Strait Islander peoples and non-Indigenous Australians. In 1991, the Royal Commission into Aboriginal Deaths in Custody linked the continuation of racism in Australian society to the weak coverage of Aboriginal and Torres Strait Islander content in the school curriculum (Reconciliation Australia 2010). Nearly two decades later, the Melbourne Declaration on Educational Goals for Young Australians issued by the council of Federal, State and Territory Ministers of Education proclaimed that curriculum should enable all students to ‘understand and acknowledge the value of Indigenous cultures and possess the knowledge, skills and understanding to contribute to, and benefit from reconciliation between Indigenous and non-Indigenous Australians’ (MCEETYA 2008, 9). Education holds out promise not only of better life chances for Indigenous young people, but also of replacing myths with understanding and tackling prejudice and racism within the non-Indigenous population. Bernstein’s (2000) model of pedagogic rights promises some purchase on this pedagogic work by providing concepts for looking systematically at the participation of non-Indigenous teachers in education. As observed by Frandji and Vitale (Chapter 2, this volume), the model is not sufficient to achieve a democratic reality, ‘but simply provides a basis for problematizing reality and considering possibilities’.

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The objective of this study was to identify symptom clusters and their effect on quality of life (QOL) of adults with chronic leg ulcers of mixed venous and arterial aetiology. A secondary analysis of data from four existing prospective longitudinal studies conducted by a wound healing research group in Australia was undertaken. A total of 110 patients who met the inclusion criteria were selected for this study. Exploratory factor analysis (EFA) was used to identify symptom clusters and correlational analyses to examine relationships between the identified symptom clusters and QOL. The EFA identified two distinct symptom clusters: a 'systemic symptom cluster' consisting of pain, fatigue and depressive symptoms; and a 'localised-leg symptom cluster' including pain, fatigue, oedema, lower limb inflammation and exudate. Physical QOL correlated significantly with the systemic symptom cluster (r = -0·055, P < 0·0001) and the localised-leg symptom cluster (r = -0·054, P < 0·0001), whereas mental QOL was associated only with the systemic symptom cluster (r = -0·038, P = 0·01). The results suggest that appropriate intervention strategies targeting specific symptom clusters should be developed. Targeting patients with symptom clusters is particularly important because they are at high risk and the most vulnerable for reduced QOL.

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This article discusses the experience of economic inequality of badli workers in the state-owned jute mills of the postcolonial state of Bangladesh, and how this inequality is constituted and perpetuated. Nominally appointed to fill posts during the temporary absence of permanent workers, the reality of badli workers’ employment is very different. They define themselves as ‘a different category of workers’, with limited economic entitlements. We undertake content analysis of the badli workers’ narratives to identify elements that they themselves consider constitute these economic entitlements. We consider their perceptions of discrimination and exclusion and explain how, in response to these feelings, they construct their survival strategy. From this, through the writings of Armatya Sen, we discuss the badli workers’ contextual experience and understanding of economic inequality in relation to extant theoretical understandings, seeking to contribute to the field and to empirical studies in the subaltern context.

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Background: To effectively care for people who are terminally ill, including those without decision-making capacity, palliative care physicians must know and understand the legal standing of Advance Care Planning (ACP) in their jurisdiction of practice. This includes the use of advance directives/living wills (ADs) and substitute decision-makers (SDMs) who can legally consent to or refuse treatment if there is no valid AD. Aim: The study aimed to investigate the knowledge, attitudes and practices of medical specialists most often involved in end-of-life care in relation to the law on withholding/ withdrawing life-sustaining treatment (WWLST) from adults without decision-making capacity. Design/participants: A pre-piloted survey was posted to specialists in palliative, emergency, geriatric, renal and respiratory medicine, intensive care and medical oncology in three Australian States. Surveys were analysed using SPSS20 and SAS 9.3. Results: The overall response rate was 32% (867/2702); 52% from palliative care specialists. Palliative Care specialists and Geriatricians had significantly more positive attitudes towards the law (χ242 = 94.352; p < 0.001) and higher levels of knowledge about the WWLST law (χ27 = 30.033; p < 0.001), than did the other specialists, while still having critical gaps in their knowledge. Conclusions: A high level of knowledge of the law is essential to ensure that patients’ wishes and decisions, expressed through ACP, are respected to the maximum extent possible within the law, thereby according with the principles and philosophy of palliative care. It is also essential to protect health professionals from legal action resulting from unauthorised provision or removal of treatment.

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This PhD playfully employs visual arts as a means through which to explore concepts of gender, normative behaviour, play, humour, collecting and an intimate and idiosyncratic relationship with domestic space. This PhD seeks to: represent certain complexities of individual experience through theoretical frameworks of Gaston Bachelard, Michel de Certeau, Pierre Bourdieu and selected visual artists; use my art to elucidate the humour that exists in the mundane; and illustrate the construction of particular life-worlds using auto-ethnography and visual documentation. This is represented in a 50,000 word exegesis (50%) and a practice comprising of eight artist books (50%).

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AIMS The aim of this narrative review of the literature was to examine the current state of knowledge regarding the impact of aggressive surgical interventions for severe stroke on patient and caregiver quality of life and caregiver outcomes. BACKGROUND Decompressive hemicraniectomy (DHC) is a surgical therapeutic option for treatment of massive middle cerebral artery infarction (MCA), lobar intracerebral hemorrhage (ICH), and severe aneurysmal subarachnoid hemorrhage (aSAH). Decompressive hemicraniectomy has been shown to be effective in reducing mortality in these three life-threatening conditions. Significant functional impairment is an experience common to many severe stroke survivors worldwide and close relatives experience decision-making difficulty when confronted with making life or death choices related to surgical intervention for severe stroke. DATA SOURCES Academic Search Premier, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, and PsychInfo. REVIEW METHODS A narrative review methodology was utilized in this review of the literature related to long-term outcomes following decompressive hemicraniectomy for stroke. The key words decompressive hemicraniectomy, severe stroke, middle cerebral artery stroke, subarachnoid hemorrhage, lobar ICH, intracerebral hemorrhage, quality of life, and caregivers, literature review were combined to search the databases. RESULTS Good functional outcomes following DHC for life-threatening stroke have been shown to be associated with younger age and few co-morbid conditions. It was also apparent that quality of life was reduced for many stroke survivors, although not assessed routinely in studies. Caregiver burden has not been systematically studied in this population. CONCLUSION Most patients and caregivers in the studies reviewed agreed with the original decision to undergo DHC and would make the same decision again. However, little is known about quality of life for both patients and caregivers and caregiver burden over the long-term post-surgery. Further research is needed to generate information and interventions for the management of ongoing patient and carer recovery following DHC for severe stroke.

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This study used prospective birth cohort data to analyse the relationship between peer aggression at 14 years of age and educational and employment outcomes at 17 years (N = 1091) and 20 years (N = 1003). Participants from the Western Australian Pregnancy Cohort (Raine) study were divided into mutually exclusive categories of peer aggression. Involvement in peer aggression was reported by 40.2% (10.1% victims; 21.4% perpetrators; 8.7% victim–perpetrators) of participants. Participants involved in any form of peer aggression were less likely to complete secondary school. Perpetrators and victim–perpetrators of peer aggression were more likely to be in the ‘No Education, Employment or Training’ group at 20 years of age. This association was explained by non-completion of secondary school. These findings demonstrate a robust association between involvement in peer aggression and non-completion of secondary school, which in turn was associated with an increased risk of poor educational and employment outcomes in early adulthood.

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In 2009, the National Research Council of the National Academies released a report on A New Biology for the 21st Century. The council preferred the term ‘New Biology’ to capture the convergence and integration of the various disciplines of biology. The National Research Council stressed: ‘The essence of the New Biology, as defined by the committee, is integration—re-integration of the many sub-disciplines of biology, and the integration into biology of physicists, chemists, computer scientists, engineers, and mathematicians to create a research community with the capacity to tackle a broad range of scientific and societal problems.’ They define the ‘New Biology’ as ‘integrating life science research with physical science, engineering, computational science, and mathematics’. The National Research Council reflected: 'Biology is at a point of inflection. Years of research have generated detailed information about the components of the complex systems that characterize life––genes, cells, organisms, ecosystems––and this knowledge has begun to fuse into greater understanding of how all those components work together as systems. Powerful tools are allowing biologists to probe complex systems in ever greater detail, from molecular events in individual cells to global biogeochemical cycles. Integration within biology and increasingly fruitful collaboration with physical, earth, and computational scientists, mathematicians, and engineers are making it possible to predict and control the activities of biological systems in ever greater detail.' The National Research Council contended that the New Biology could address a number of pressing challenges. First, it stressed that the New Biology could ‘generate food plants to adapt and grow sustainably in changing environments’. Second, the New Biology could ‘understand and sustain ecosystem function and biodiversity in the face of rapid change’. Third, the New Biology could ‘expand sustainable alternatives to fossil fuels’. Moreover, it was hoped that the New Biology could lead to a better understanding of individual health: ‘The New Biology can accelerate fundamental understanding of the systems that underlie health and the development of the tools and technologies that will in turn lead to more efficient approaches to developing therapeutics and enabling individualized, predictive medicine.’ Biological research has certainly been changing direction in response to changing societal problems. Over the last decade, increasing awareness of the impacts of climate change and dwindling supplies of fossil fuels can be seen to have generated investment in fields such as biofuels, climate-ready crops and storage of agricultural genetic resources. In considering biotechnology’s role in the twenty-first century, biological future-predictor Carlson’s firm Biodesic states: ‘The problems the world faces today – ecosystem responses to global warming, geriatric care in the developed world or infectious diseases in the developing world, the efficient production of more goods using less energy and fewer raw materials – all depend on understanding and then applying biology as a technology.’ This collection considers the roles of intellectual property law in regulating emerging technologies in the biological sciences. Stephen Hilgartner comments that patent law plays a significant part in social negotiations about the shape of emerging technological systems or artefacts: 'Emerging technology – especially in such hotbeds of change as the life sciences, information technology, biomedicine, and nanotechnology – became a site of contention where competing groups pursued incompatible normative visions. Indeed, as people recognized that questions about the shape of technological systems were nothing less than questions about the future shape of societies, science and technology achieved central significance in contemporary democracies. In this context, states face ongoing difficulties trying to mediate these tensions and establish mechanisms for addressing problems of representation and participation in the sociopolitical process that shapes emerging technology.' The introduction to the collection will provide a thumbnail, comparative overview of recent developments in intellectual property and biotechnology – as a foundation to the collection. Section I of this introduction considers recent developments in United States patent law, policy and practice with respect to biotechnology – in particular, highlighting the Myriad Genetics dispute and the decision of the Supreme Court of the United States in Bilski v. Kappos. Section II considers the cross-currents in Canadian jurisprudence in intellectual property and biotechnology. Section III surveys developments in the European Union – and the interpretation of the European Biotechnology Directive. Section IV focuses upon Australia and New Zealand, and considers the policy responses to the controversy of Genetic Technologies Limited’s patents in respect of non-coding DNA and genomic mapping. Section V outlines the parts of the collection and the contents of the chapters.

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In his book, The Emperor of All Maladies, Siddhartha Mukherjee writes a history of cancer — "It is a chronicle of an ancient disease — once a clandestine, 'whispered-about' illness — that has metamorphosed into a lethal shape-shifting entity imbued with such penetrating metaphorical, medical, scientific, and political potency that cancer is often described as the defining plague of our generation." Increasingly, an important theme in the history of cancer is the role of law, particularly in the field of intellectual property law. It is striking that a number of contemporary policy debates over intellectual property and public health have concerned cancer research, diagnosis, and treatment. In the area of access to essential medicines, there has been much debate over Novartis’ patent application in respect of Glivec, a treatment for leukaemia. India’s Supreme Court held that the Swiss company’s patent application violated a safeguard provision in India’s patent law designed to stop evergreening. In the field of tobacco control, the Australian Government introduced plain packaging for tobacco products in order to address the health burdens associated with the tobacco epidemic. This regime was successfully defended in the High Court of Australia. In the area of intellectual property and biotechnology, there have been significant disputes over the Utah biotechnology company Myriad Genetics and its patents in respect of genetic testing for BRCA1 and BRCA2, which are related to breast cancer and ovarian cancer. The Federal Court of Australia handed down a decision on the validity of Myriad Genetics’ patent in respect of genetic testing for BRCA1 in February 2013. The Supreme Court of the United States heard a challenge to the validity of Myriad Genetics’ patents in this area in April 2013, and handed down a judgment in July 2013. Such disputes have involved tensions between intellectual property rights, and public health. This article focuses upon one of these important test cases involving intellectual property, public health, and cancer research. In June 2010, Cancer Voices Australia and Yvonne D’Arcy brought an action in the Federal Court of Australia against the validity of a BRCA1 patent — held by Myriad Genetics Inc, the Centre de Recherche du Chul, the Cancer Institute of Japan and Genetic Technologies Limited. Yvonne D’Arcy — a Brisbane woman who has had treatment for breast cancer — maintained: "I believe that what they are doing is morally and ethically corrupt and that big companies should not control any parts of the human body." She observed: "For my daughter, I've had her have [sic] mammograms, etc, because of me but I would still like her to be able to have the test to see if the mutation gene is in there from me." The applicants made the following arguments: "Genes and the information represented by human gene sequences are products of nature universally present in each individual, and the information content of a human gene sequence is fixed. Genetic variations or mutations are products of nature. The isolation of the BRCA1 gene mutation from the human body constitutes no more than a medical or scientific discovery of a naturally occurring phenomenon and does not give rise to a patentable invention." The applicants also argued that "the alleged invention is not a patentable invention in that, so far as claimed in claims 1–3, it is not a manner of manufacture within the meaning of s 6 of the Statute of Monopolies". The applicants suggested that "the alleged invention is a mere discovery". Moreover, the applicants contended that "the alleged invention of each of claims 1-3 is not a patentable invention because they are claims for biological processes for the generation of human beings". The applicants, though, later dropped the argument that the patent claims related to biological processes for the generation of human beings. In February 2013, Nicholas J of the Federal Court of Australia considered the case brought by Cancer Voices Australia and Yvonne D’Arcy against Myriad Genetics. The judge presented the issues in the case, as follows: "The issue that arises in this case is of considerable importance. It relates to the patentability of genes, or gene sequences, and the practice of 'gene patenting'. Briefly stated, the issue to be decided is whether under the Patents Act 1990 (Cth) a valid patent may be granted for a claim that covers naturally occurring nucleic acid — either deoxyribonucleic acid (DNA) or ribonucleic acid (RNA) — that has been 'isolated'". In this context, the word "isolated" implies that naturally occurring nucleic acid found in the cells of the human body, whether it be DNA or RNA, has been removed from the cellular environment in which it naturally exists and separated from other cellular components also found there. The genes found in the human body are made of nucleic acid. The particular gene with which the patent in suit is concerned (BRCA1) is a human breast and ovarian cancer disposing gene. Various mutations that may be present in this gene have been linked to various forms of cancer including breast cancer and ovarian cancer.' The judge held in this particular case that Myriad Genetics’ patent claims were a "manner of manufacture" under s 6 of the Statute of Monopolies and s 18(1)(a) of the Patents Act 1990 (Cth). The matter is currently under appeal in the Full Court of the Federal Court of Australia. This article interprets the dispute over Myriad Genetics in light of the scholarly work of Nobel Laureate Professor Joseph Stiglitz on inequality. Such work has significant explanatory power in the context of intellectual property and biotechnology. First, Stiglitz has contended that "societal inequality was a result not just of the laws of economics, but also of how we shape the economy — through politics, including through almost every aspect of our legal system". Stiglitz is concerned that "our intellectual property regime … contributes needlessly to the gravest form of inequality." He maintains: "The right to life should not be contingent on the ability to pay." Second, Stiglitz worries that "some of the most iniquitous aspects of inequality creation within our economic system are a result of 'rent-seeking': profits, and inequality, generated by manipulating social or political conditions to get a larger share of the economic pie, rather than increasing the size of that pie". He observes that "the most iniquitous aspect of this wealth appropriation arises when the wealth that goes to the top comes at the expense of the bottom." Third, Stiglitz comments: "When the legal regime governing intellectual property rights is designed poorly, it facilitates rent-seeking" and "the result is that there is actually less innovation and more inequality." He is concerned that intellectual property regimes "create monopoly rents that impede access to health both create inequality and hamper growth more generally." Finally, Stiglitz has recommended: "Government-financed research, foundations, and the prize system … are alternatives, with major advantages, and without the inequality-increasing disadvantages of the current intellectual property rights system.’" This article provides a critical analysis of the Australian litigation and debate surrounding Myriad Genetics’ patents in respect of genetic testing for BRCA1. First, it considers the ruling of Nicholas J in the Federal Court of Australia that Myriad Genetics’ patent was a manner of manufacture as it related to an artificially created state of affairs, and not mere products of nature. Second, it examines the policy debate over gene patents in Australia, and its relevance to the litigation involving Myriad Genetics. Third, it examines comparative law, and contrasts the ruling by Nicholas J in the Federal Court of Australia with developments in the United States, Canada, and the European Union. Fourth, this piece considers the reaction to the decision of Nicholas at first instance in Australia. Fifth, the article assesses the prospects of an appeal to the Full Federal Court of Australia over the Myriad Genetics’ patents. Finally, this article observes that, whatever happens in respect of litigation against Myriad Genetics, there remains controversy over Genetic Technologies Limited. The Melbourne firm has been aggressively licensing and enforcing its related patents on non-coding DNA and genomic mapping.

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Aim The aim of this study was to analyse the effect of an 8-week multimodal physiotherapy programme (MPP), integrating physical land-based therapeutic exercise (TE), adapted swimming and health education, as a treatment for patients with chronic non-specific neck pain (CNSNP), on disability, general health/mental states and quality of life. Methods 175 CNSNP patients from a community-based centre were recruited to participate in this prospective study. Intervention: 60-minute session (30 minutes of land-based exercise dedicated to improving mobility, motor control, resistance and strengthening of the neck muscles, and 30 minutes of adapted swimming with aerobic exercise keeping a neutral neck position using a snorkel). Health education was provided using a decalogue on CNSNP and constant repetition of brief advice by the physiotherapist during the supervision of the exercises in each session. Study outcomes: primary: disability (Neck Disability Index); secondary: physical and mental health states and quality of life of patients (SF-12 and EuroQoL-5D respectively). Differences between baseline data and that at the 8-week follow-up were calculated for all outcome variables. Results Disability showed a significant improvement of 24.6% from a mean (SD) of 28.2 (13.08) at baseline to 16.88 (11.62) at the end of the 8-week intervention. All secondary outcome variables were observed to show significant, clinically relevant improvements with increase ranges between 13.0% and 16.3% from a mean of 0.70 (0.2) at baseline to 0.83 (0.2), for EuroQoL-5D, and from a mean of 40.6 (12.7) at baseline to 56.9 (9.5), for mental health state, at the end of the 8-week intervention. Conclusion After 8 weeks of a MPP that integrated land-based physical TE, health education and adapted swimming, clinically-relevant and statistically-significant improvements were observed for disability, physical and mental health states and quality of life in patients who suffer CNSNP. The clinical efficacy requires verification using a randomised controlled study design.