151 resultados para Survivors


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Background The improved treatment protocols and subsequent improved survival rates amongst childhood cancer patients has shifted the focus towards the long-term consequences arising from cancer treatment. Children who have completed cancer treatment are at a greater risk of delayed development, diminished functioning, disability, compromised fundamental movement skill (FMS) attainment and long term chronic health conditions. The aim of the study was to compare FMS of childhood cancer patients with an aged matched healthy reference group. Methods Pediatric cancer patients aged 5-8 years of age (n=26; median age 6.91 years), who completed cancer treatment (<5 years) at the Sydney Children’s Hospital were assessed performing 7 key FMS; sprint, side-gallop, vertical-jump, catch, over-arm throw, kick and leap. Results were compared to the reference group (n=430; 6.56 years). Results Childhood cancer patients scored significantly lower on 3 out of 7 FMS tests when compared to the reference group. These results equated to a significantly lower overall score for FMS. Conclusion This study highlighted the significant deficits in FMS within pediatric patients having completed cancer treatment. In order to reduce the occurrence of significant FMS deficits in this population, FMS interventions maybe warranted to assist in recovery from childhood cancer, prevent late effects and improve the quality of life in survivors of childhood cancer.

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Title The trajectory of minor stroke recovery for men and their female spousal caregivers: literature review Aim This paper is a report of a narrative review to examine the current state of knowledge regarding the impact of minor stroke on male patients and their female spousal caregivers’ recovery trajectory and quality of life. Background Minor stroke survivors are often discharged early in the recovery process. The perception of the healthcare community that these patients and their female spousal caregivers will experience an uneventful recovery may lead to inadequate preparation for the postdischarge period. Methods A range of databases was searched to identify papers addressing ‘minor stroke’, ‘transitions’, ‘quality of life’, ‘chronic disease’, ‘caregivers’ and ‘spouse caregivers’, including AARP Ageline, AMED, CINAHL, Evidence Based Medicine Reviews, MEDLINE and PsychInfo. Papers published in English from 1990 to December 2006 were included. Thirty-four papers were in the final data set. Results Minor stroke survivors and their female spousal caregivers may experience major challenges in adaptations postdischarge. The trajectory of minor stroke recovery may necessitate a re-evaluation of life plans, rethinking of priorities and integration of resulting disabilities into current and emerging life situations for both stroke survivors and their female spousal caregivers. In many cases these adaptations are compounded by transitions associated with the normal ageing process. Conclusion While there is extensive literature on stroke recovery and the role of caregivers in general, there is little available describing the recovery of minor stroke survivors in relation to the normal ageing process. Further research is needed examining recovery from a transitional perspective, to support nurses and other health professionals discharge planning.

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This study qualitatively examined an 8 week group exercise and counseling intervention for breast and prostate cancer survivors. Groups exercised 3 days per week, 50 minutes per session,performing moderate intensity aerobic and resistance training. Groups also underwent 90 minute supportive group psychotherapy sessions once per week. Survivors discussed their experiences in focus groups post intervention. Transcripts were analyzed using interpretative phenomenological analysis. Survivors described how exercise facilitated counseling by creating mutual aid and trust, and counseling helped participants with self-identity, sexuality, and returning to normalcy. When possible, counselors and fitness professionals should create partnerships to optimally support cancer survivors.

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Exercise has been identified as an integral component of comprehensive survivorship care and a promising adjuvant therapy to aid in the management of cancer. Leading organisations worldwide now advocate exercise for cancer survivors. Here we briefly review the existing evidence for exercise and survivorship, as well as current research endeavours in Australia. Discussion extends to identify the gaps between research and practice, as well as future research directions needed to drive the field forward. With continued efforts by scientists, clinicians and consumers, there is real potential to strengthen the nexus between scientific evidence and clinical practice and integrate exercise into standard cancer care.

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Introduction Axillary web syndrome (AWS) can result in early post-operative and long-term difficulties following lymphadenectomy for cancer and should be recognised by clinicians. This systematic review was conducted to synthesise information on AWS clinical presentation and diagnosis, frequency, natural progression, grading, pathoaetiology, risk factors, symptoms, interventions and outcomes. Methods Electronic searches were conducted using Cochrane, Pubmed, MEDLINE, CINAHL, EMBASE, AMED, PEDro and Google Scholar until June 2013. The methodological quality of included studies was determined using the Downs and Black checklist. Narrative synthesis of results was undertaken. Results Thirty-seven studies with methodological quality scores ranging from 11 to 26 on a 28-point scale were included. AWS diagnosis relies on inspection and palpation; grading has not been validated. AWS frequency was reported in up to 85.4 % of patients. Biopsies identified venous and lymphatic pathoaetiology with five studies suggesting lymphatic involvement. Twenty-one studies reported AWS occurrence within eight post-operative weeks, but late occurrence of greater than 3 months is possible. Pain was commonly reported with shoulder abduction more restricted than flexion. AWS symptoms usually resolve within 3 months but may persist. Risk factors may include extensiveness of surgery, younger age, lower body mass index, ethnicity and healing complications. Low-quality studies suggest that conservative approaches including analgesics, non-steroidal anti-inflammatory drugs and/or physiotherapy may be safe and effective for early symptom reduction. Conclusions AWS appears common. Current evidence for the treatment of AWS is insufficient to provide clear guidance for clinical practice. Implications for Cancer Survivors Cancer survivors should be informed about AWS. Further investigation is needed into pathoaetiology, long-term outcomes and to determine effective treatment using standardised outcomes.

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Malnutrition is common in end-stage liver disease, but a correction after transplantation is expected. Body cell mass (BCM) assessment using total body potassium (TBK) measurements is considered the gold standard for assessing nutritional status. The aim of this study was to examine the BCM and, therefore, nutritional status of long-term survivors after childhood liver transplantation. © 2014 American Association for the Study of Liver Diseases.

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Objective: To review the outcome of acute liver failure (ALF) and the effect of liver transplantation in children in Australia. Methodology: A retrospective review was conducted of all paediatric patients referred with acute liver failure between 1985 and 2000 to the Queensland Liver Transplant Service, a paediatric liver transplant centre based at the Royal Children's Hospital, Brisbane, that is one of three paediatric transplant centres in Australia. Results: Twenty-six patients were referred with ALF. Four patients did not require transplantation and recovered with medical therapy while two were excluded because of irreversible neurological changes and died. Of the 20 patients considered for transplant, three refused for social and/or religious reasons, with 17 patients listed for transplantation. One patient recovered spontaneously and one died before receiving a transplant. There were 15 transplants of which 40% (6/15) were < 2 years old. Sixty-seven per cent (10/15) survived > 1 month after transplantation. Forty per cent (6/15) survived more than 6 months after transplant. There were only four long term survivors after transplant for ALF (27%). Overall, 27% (6/22) of patients referred with ALF survived. Of the 16 patients that died, 44% (7/16) were from neurological causes. Most of these were from cerebral oedema but two patients transplanted for valproate hepatotoxicity died from neurological disease despite good graft function. Conclusions: Irreversible neurological disease remains a major cause of death in children with ALF. We recommend better patient selection and early referral and transfer to a transplant centre before onset of irreversible neurological disease to optimize outcome of children transplanted for ALF.

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The impact of disease and treatment on a young adult's self-image and sexuality has been largely overlooked. This is surprising given that establishing social and romantic relationships is a normal occurrence in young adulthood. This article describes three female patients' cancer journeys and demonstrates how their experiences have impacted their psychosocial function and self-regard. The themes of body image, self-esteem, and identity formation are explored, in relation to implications for relationship-building and moving beyond a cancer diagnosis. This article has been written by young cancer survivors, Danielle Tindle, Kelly Denver, and Faye Lilley, in an effort to elucidate the ongoing struggle to reconcile cancer into a normal young adult's life.

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Previously, we reported catch-up weight gain, growth, and improved lung function in a group of malnourished cystic fibrosis (CF) children receiving aggressive nutritional supplementation for 1 year compared with a forced expiratory volume in 1 s (FEV1)-, height-, and sex-matched comparison group receiving standard therapy. To evaluate long-term effects, the clinical progress of both groups has been studied over a 5 year period. The supplemented group (n = 10) received supplements for a median of 1.35 years to achieve nutritional rehabilitation. Compared with the nonsupplemented group (n = 14), the previously supplemented group had lower mortality (2 vs. 4, N.S.) and significantly greater weight and height z scores at 4 and 5 years. The progression of pulmonary function abnormalities as measured by FEV, and forced vital capacity (FVC) slopes was greater at 3 years in the nonsupplemented group (FEV1, p < 0.05) but no significant differences in rates of deterioration of pulmonary function were seen after 5 years in the two groups of survivors. We conclude that intensive nutritional support for 1 year has both short-and long-term effects on nutrition and growth, still evident some years after the cessation of this therapeutic modality. Supplementation for periods of longer than 1 year may produce greater gains and possibly prolong the improvement in pulmonary function observed in the earlier study. © 1992 Raven Press, Ltd., New York.

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The aims of this study were to investigate outcome and to evaluate areas of potential ongoing concern after orthotopic liver transplantation (OLT) in children. Actuarial survival in relation to age and degree of undernutrition at the time of OLT was evaluated in 53 children (age 0.58-14.2 years) undergoing OLT for endstage liver disease. Follow-up studies of growth and quality of life were undertaken in those with a minimum follow-up period of 12 months (n = 26). The overall 3 year actuarial survival was 70%. Survival rates did not differ between age groups (actuarial 2 year survival for ages <1, 1-5 and >5 years were 70, 70 and 69% respectively) but did differ according to nutritional status at OLT (actuarial 2 year survival for children with Z scores for weight <-1 was 57%, >-1 was 95%; P = 0.004). Significant catch-up weight gain was observed by 18 months post-transplant, while height improved less rapidly. Quality of life (assessed by Vineland Adaptive Behaviour Scales incorporating socialization, daily living skills, communication and motor skills) was good (mean composite score 91 ± 19). All school-aged children except one were attending normal school. Two children had mild to moderate intellectual handicap related to post-operative intracerebral complications. Satisfactory long-term survival can be achieved after OLT in children regardless of age but the importance of pre-operative nutrition is emphasized. Survivors have an excellent chance of a good quality of life and of satisfactory catch-up weight gain and growth.

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Introduction: Decompressive hemicraniectomy, clot evacuation, and aneurysmal interventions are considered aggressive surgical therapeutic options for treatment of massive cerebral artery infarction (MCA), intracerebral hemorrhage (ICH), and severe subarachnoid hemorrhage (SAH) respectively. Although these procedures are saving lives, little is actually known about the impact on outcomes other than short-term survival and functional status. The purpose of this study was to gain a better understanding of personal and social consequences of surviving these aggressive surgical interventions in order to aid acute care clinicians in helping family members make difficult decisions about undertaking such interventions. Methods: An exploratory mixed method study using a convergent parallel design was conducted to examine functional recovery (NIHSS, mRS & BI), cognitive status (Montreal Cognitive Assessment Scale, MoCA), quality of life (Euroqol 5-D), and caregiver outcomes (Bakas Caregiver Outcome Scale, BCOS) in a cohort of patients and families who had undergone aggressive surgical intervention for severe stroke between the years 2000–2007. Data were analyzed using descriptive statistics, univariate and multivariate analysis of variance, and multivariate logistic regression. Content analysis was used to analyze the qualitative interviews conducted with stroke survivors and family members. Results: Twenty-seven patients and 13 spouses participated in this study. Based on patient MOCA scores, overall cognitive status was 25.18 (range 23.4-26.9); current functional outcomes scores: NIHSS 2.22, mRS 1.74, and BI 88.5. EQ-5D scores revealed no significant differences between patients and caregivers (p=0.585) and caregiver outcomes revealed no significant differences between male/female caregivers or patient diagnostic group (MCA, SAH, ICH; p=""0.103).<"/span><"/span> Discussion: Overall, patients and families were satisfied with quality of life and decisions made at the time of the initial stroke. There was consensus among study participants that formal community-based support (e.g., handibus, caregiving relief, rehabilitation assessments) should be continued for extended periods (e.g., years) post-stroke. Ongoing contact with health care professionals is valuable to help them navigate in the community as needs change over time.

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This paper draws on the theoretical arguments outlined in Hayes (2014) to frame critical analyses of two real life domestic violence narratives. The authors are both academic criminologists and victims/survivors of domestic violence, but within differing contexts – one a conventional heterosexual relationship, the other a female same-sex relationship. Their experiences are intertwined in an extensive collaborative auto-ethnographic analysis that spans seven years of working and socialising together, in which each provided a sounding board and support for the other. The analysis therefore documents two personal journeys. The academic and theoretical are intertwined with the personal and subjective to elicit an evocative and yet empirically validated study. The theoretical underpinnings of romantic love distortion, misogyny and sexism are used to frame these experiences of domestic violence and the differing sexualities of the authors provide a rich context for exploring the ways in which domestic violence victimisation experiences are impacted by gender, sexuality, and heteronormative discourses of love, sex and relationships.

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Background Sedentary behaviour is associated with several deleterious health consequences. Although device-based measures of sedentary time are available, they are costly and do not provide a measure of domain specific sedentary time. High quality self-report measures are necessary to accurately capture domain specific sedentary time, and to provide an alternative to devices when cost is an issue. In this study, the Past-day Adults’ Sedentary Time (PAST) questionnaire, previously shown to have acceptable validity and reliability in a sample of breast cancer survivors, was modified for a university sample and validity of the modified questionnaire was examined compared with activPAL. Methods Participants (n = 58, age = 18–55 years, 48% female, 66% students) were recruited from the University of Queensland (students and staff). They answered the PAST questionnaire, which asked about time spent sitting or lying down for work, study, travel, television viewing, leisure-time computer use, reading, eating, socialising and other purposes, during the previous day. Time reported for these questions was summed to provide a measure of total sedentary time. Participants also wore an activPAL device for the full day prior to completing the questionnaire and recorded their wake and sleep times in an activity log. Total waking sedentary time derived from the activPAL was used as the criterion measure. Correlation (Pearson's r) and agreement (Bland–Altman plots) between PAST and activPAL sedentary time were examined. Results Participants were sedentary (activPAL-determined) for approximately 66% of waking hours. The correlation between PAST and activPAL sedentary time for the whole sample was r = 0.50 [95% confidence interval (CI) = 0.28–0.67]; and higher for non-students (r = 0.63, 95% CI = 0.26–0.84) than students (r = 0.46, 95% CI = 0.16–0.68). Bland–Altman plots revealed that the mean difference between the two measures was 19 min although limits of agreement were wide (95% limits of agreement −4.1 to 4.7 h). Discussion The PAST questionnaire provides an acceptable measure of sedentary time in this population, which included students and adults with high workplace sitting. These findings support earlier research that questionnaires employing past-day recall of sedentary time provide a viable alternative to existing sedentary behaviour questionnaires.

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Every year, approximately 62 000 people with stroke and transient ischemic attack are treated in Canadian hospitals, and the evidence suggests one-third or more will experience vascular-cognitive impairment, and/or intractable fatigue, either alone or in combination. The 2015 update of the Canadian Stroke Best Practice Recommendations: Mood, Cognition and Fatigue Module guideline is a comprehensive summary of current evidence-based recommendations for clinicians in a range of settings, who provide care to patients following stroke. The three consequences of stroke that are the focus of the this guideline (poststroke depression, vascular cognitive impairment, and fatigue) have high incidence rates and significant impact on the lives of people who have had a stroke, impede recovery, and result in worse long-term outcomes. Significant practice variations and gaps in the research evidence have been reported for initial screening and in-depth assessment of stroke patients for these conditions. Also of concern, an increased number of family members and informal caregivers may also experience depressive symptoms in the poststroke recovery phase which further impact patient recovery. These factors emphasize the need for a system of care that ensures screening occurs as a standard and consistent component of clinical practice across settings as stroke patients transition from acute care to active rehabilitation and reintegration into their community. Additionally, building system capacity to ensure access to appropriate specialists for treatment and ongoing management of stroke survivors with these conditions is another great challenge.

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Introduction Patients post sepsis syndromes have a poor quality of life and a high rate of recurring illness or mortality. Follow-up clinics have been instituted for patients postgeneral intensive care but evidence is sparse, and there has been no clinic specifically for survivors of sepsis. The aim of this trial is to investigate if targeted screening and appropriate intervention to these patients can result in an improved quality of life (Short Form 36 health survey (SF36V.2)), decreased mortality in the first 12 months, decreased readmission to hospital and/or decreased use of health resources. Methods and analysis 204 patients postsepsis syndromes will be randomised to one of the two groups. The intervention group will attend an outpatient clinic two monthly for 6 months and receive screening and targeted intervention. The usual care group will remain under the care of their physician. To analyse the results, a baseline comparison will be carried out between each group. Generalised estimating equations will compare the SF36 domain scores between groups and across time points. Mortality will be compared between groups using a Cox proportional hazards (time until death) analysis. Time to first readmission will be compared between groups by a survival analysis. Healthcare costs will be compared between groups using a generalised linear model. Economic (health resource) evaluation will be a within-trial incremental cost utility analysis with a societal perspective. Ethics and dissemination Ethical approval has been granted by the Royal Brisbane and Women’s Hospital Human Research Ethics Committee (HREC; HREC/13/QRBW/17), The University of Queensland HREC (2013000543), Griffith University (RHS/08/14/HREC) and the Australian Government Department of Health (26/2013). The results of this study will be submitted to peer-reviewed intensive care journals and presented at national and international intensive care and/or rehabilitation conferences.