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Selected AbstractsManaging the entry of new medicines in the National Health Service: health authority experiences and prospects for primary care groups and trustsHEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 6 2001Ruth McDonald BA MSc PhD Abstract For the most part, the management of new medicines in the NHS has hitherto been a matter for local discretion. The result is that access to medicines is often determined by where a patient lives, as opposed to some nationally agreed clinical criteria. This ,postcode prescribing' has led to widespread variations in access to medicines and concerns about the resulting inequalities. Primary care groups and trusts are expected to reduce variations in access to care, whilst at the same time balancing their finances, since any overspends on prescribing must be covered by disinvestment in hospital and community services. We interviewed 21 health authority (HA) prescribing advisers to ascertain how they viewed the managed entry of new medicines in order to identify lessons for PCGs. In addition, we report the views of local prescribing managers on the potential impact of recent government policy changes on the process and speculate on the likely implications of these for primary care groups and trusts. What is clear from the study is that HAs often have no explicit objective in relation to new medicines, but that their desire to act is prompted by fears of overspending on prescribing budgets. The danger of this approach is that patients may be denied cost-effective treatments since all new medicines are seen as a problem. It seems likely that PCG/Ts will face the same dilemmas with which the HA advisers in our study have been wrestling for some time. Recent policy changes in relation to prescribing budgets and new medicines are likely to exacerbate these problems. The tensions between local priority setting, which may mean saying no to new medicines, whilst at the same time eradicating postcode prescribing and balancing budgets means that PCG/Ts face difficult policy choices. [source] Non-invasive ventilation in do-not-intubate patients: five-year follow-up on a two-year prospective, consecutive cohort studyACTA ANAESTHESIOLOGICA SCANDINAVICA, Issue 9 2009H.-H. BÜLOW Background: End-of-life decisions are common in intensive care units (ICUs), and increasingly, non-invasive ventilation (NIV) is used as a ceiling of ventilatory care. However, little is known about the outcome following that decision. Methods: An observational, single-center, retrospective, follow-up study with no interventions, on ICU patients treated with NIV and a do-not-intubate (DNI) order. The patients were followed until a 5-year survival rate could be calculated. Results: One hundred and fifty-seven patients were treated with NIV during 2002 and 2003, and among 38 a DNI order was in effect. Of the 38 DNI patients, 11 died in the ICU, 16 died on the ward and 11 survived the hospital stay. Five of these 11 survivors died within 6 months, two died after 2.7 and 3.3 years, respectively, but four were still alive after 5 years. The long-term (>6 months) survivors have, surprisingly only been admitted to the hospital 0,2 times a year , and seldom with the need for ICU treatment. Conclusions: According to this study, and previous ones, it seems worthwhile treating DNI patients with NIV. Twenty-five to 35% leave the hospital alive, every 6th patient lives for at least 1 year, and this paper shows that 10% may survive for 5 years or more. However, only chronic obstructive pulmonary disease and chronic heart failure patients (both with a concomitant low APACHE score) seem to have a reasonable outcome, and patients should be informed about this. So far, no study has investigated the quality of life of these survivors. [source] SPLENIC RUPTURE FOLLOWING ROUTINE COLONOSCOPYDIGESTIVE ENDOSCOPY, Issue 4 2010Tabraze Rasul Splenic rupture is a life-threatening condition characterized by internal hemorrhage, often difficult to diagnose. Colonoscopy is a gold standard routine diagnostic test to investigate patients with gastrointestinal symptoms as well as to those on the screening program for colorectal cancer. Splenic injury is seldomly discussed during consent for colonoscopy, as opposed to colonic perforation, as its prevalence accounts for less than 0.1%. A 66-year-old Caucasian woman with no history of collagen disorder was electively admitted for routine colonoscopy for surveillance of adenoma. She was admitted following the procedure for re-dosing of warfarin, which was stopped prior to the colonoscopy. The patient was found collapsed on the ward the following day with clinical shock and anemia. Computed tomography demonstrated grade 4 splenic rupture. Immediate blood transfusion and splenectomy was required. Splenic rupture following routine colonoscopy is extremely rare. Awareness of it on this occasion saved the patient's life. Despite it being a rare association, the seriousness warrants inclusion in all information leaflets concerning colonoscopy and during its consent. [source] Should the consumption of survivors be included as a cost in cost,utility analysis?HEALTH ECONOMICS, Issue 5 2004John A. Nyman Abstract Survivor costs are those costs associated with a treatment because it extends the patient's life. A controversy exists regarding whether survivor consumption costs should be included in cost,utility analyses. The present paper uses this controversy to motivate a general reexamination of what costs to include in cost,utility analyses. Rather than the ad hoc inclusion rules currently used , a causal relationship between the intervention and the costs, and a proscription on double counting , this paper suggests three inclusion principles based on standard welfare economics. Thus, costs should be (1) included if they represent resources that directly produce the utility that is being measured in the denominator of the cost,utility ratio, (2) excluded if they represent resources that produce utility that is not being measured in the denominator, even though the costs are causally associated with the intervention, and (3) included if they represent resources consumed that are causally related to the intervention, but that have no counterveiling utility gains. These principles suggest important changes in how we account for recuperation time and unrelated medical care. They also suggest that survival consumption costs and earnings be excluded from existing cost,utility analyses. Copyright © 2003 John Wiley & Sons, Ltd. [source] Hypospadias repair: an overviewINTERNATIONAL JOURNAL OF UROLOGICAL NURSING, Issue 1 2010Michael Pfeil Hypospadias is a birth defect in boys where the meatus is not placed at the tip of the glans of the penis. This article reviews the rapidly developing international literature surrounding hypospadias and hypospadias repairs paying specific attention to important aspects of nursing care, including preparing for surgery, use of dressings, stents and catheters as well as medication. It concludes by considering the long-term impact of hypospadias and its surgical correction on the patient's life. Hypospadias is treated surgically, normally during the second 6 months of the boy's life. Hospitalization periods vary from day case surgery to several days. The success of the hypospadias repair can be measured according to functional results and cosmetic appearance of the penis. The post-operative use of dressings as well as urinary catheters or stents is common but not uniform. Complication rates for hypospadias surgery vary from below 10% in boys with distal hypospadias to above 50% in children with a proximal meatus. The most common complications are urethral fistulas, strictures and stenoses. The continuing efforts by paediatric urologists focus on further optimizing the cosmetic and functional results. [source] Patients' experience of learning and gaining personal knowledge during a stay at a mental hospitalJOURNAL OF PSYCHIATRIC & MENTAL HEALTH NURSING, Issue 5 2008L. BORGE ba rpn rnt The focus is on voluntarily hospitalized patients' subjective experiences of learning and gaining personal knowledge during a stay at a mental hospital. The aim was to explore and describe patients' learning as personal knowledge acquisition related to the therapeutic process during hospitalization. The study was exploratory and descriptive, with a hermeneutic , phenomenological approach in data collection and analysis. Qualitative interviews were carried out with 15 patients during and after their stay. A re-analysis was conducted. The results underline the importance of the environmental effects on patients' motivation for learning and self-esteem in an acknowledging milieu. Moving towards relearning presupposes that the patient's motivation is aroused. Patients must participate in the treatment and the validity of the knowledge must be tested in the individual patient's life. The patients confirmed and helped each other to increase insight through recognizing each other's problems and reactions. Time in itself seemed to increase self-reflection. Receiving impulses and getting concrete tools through therapy stimulated meaning and hope for future living. The professionals must use a holistic approach including a learning climate in pleasant surroundings and a conjoint contribution from fellow patients and staff. Further research should focus on how to combine therapy with learning , preferably by means of a co-operative inquiry design. [source] Psoriasis: is the impairment to a patient's life cumulative?JOURNAL OF THE EUROPEAN ACADEMY OF DERMATOLOGY & VENEREOLOGY, Issue 9 2010AB Kimball Abstract Psoriasis is associated with significant physical and psychological burden affecting all facets of a patient's life , relationships, social activities, work and emotional wellbeing. The cumulative effect of this disability may be self-perpetuating social disconnection and failure to achieve a ,full life potential' in some patients. Health-related quality of life studies have quantified the burden of psoriasis providing predominantly cross-sectional data and point-in-time images of patients' lives rather than assessing the possible cumulative disability over a patient's lifetime. However, social and economic outcomes indicate there are likely negative impacts that accumulate over time. To capture the cumulative effect of psoriasis and its associated co-morbidities and stigma over a patient's life course, we propose the concept of ,Cumulative Life Course Impairment' (CLCI). CLCI results from an interaction between (A) the burden of stigmatization, and physical and psychological co-morbidities and (B) coping strategies and external factors. Several key aspects of the CLCI concept are supported by data similar to that used in health-related quality of life assessments. Future research should focus on (i) establishing key components of CLCI and determining the mechanisms of impairment through longitudinal or retrospective case,control studies, and (ii) assessing factors that put patients at increased risk of developing CLCI. In the future, this concept may lead to a better understanding of the overall impact of psoriasis, help identify more vulnerable patients, and facilitate more appropriate treatment decisions or earlier referrals. To our knowledge, this is a first attempt to apply and develop concepts from ,Life Course Epidemiology' to psoriasis research. [source] Abstracts of the 8th Meeting of the Italian Peripheral Nerve Study Group: 46JOURNAL OF THE PERIPHERAL NERVOUS SYSTEM, Issue 1 2003L Padua Traditional outcome assessment in neurological diseases has always been based on physician-derived and instrumental findings. Over the last two decades, clinical and public health researchers emphasized the need for a thorough evaluation of concepts such as Health Related Quality of Life (HRQoL) to study the impact of chronic illnesses and their treatments on the patient's life. The most frequent inherited neuropathy is Charcot-Marie-Tooth disease (CMT). CMT Patients develop progressive weakness and sensory disturbances, becoming sometimes severely disabled even at very young age. In CMT clinic, neurophysiologic, pathologic and genetic evaluation, are considered fundamental to assess nerve involvement and diagnose, but how these findings are related to HRQoL and disability is not assessed. We propose a prospective follow-up (24,30 months) of CMT patients with multiple measurements of CMT. Besides conventional clinic, pathologic, neurophysiologic and genetic measurements we adopt validated patient-oriented measurements to assess HRQoL and disability. Aims of the study are: 1) to assess HRQoL and disability of CMT patients in a wide and well-represented sample and to evaluate the relationships between conventional parameters and the patient's perception of his own HRQoL and disability; 2) to evaluate natural history of HRQoL and disability in CMT, and to evaluate the predictive value of phenotype, genetic picture, neurophysiological and pathological pattern 3) to develop a national network and a database on CMT disease (this aim includes the standardization, based on a consensus validation process, of the most used terms and measurements in CMT and the development of a database software). In a preliminary reunion, the authors developed a dedicated database for patients affected by CMT. Details about this database will be presented. [source] Review article: Patient-level outcomes: the missing linkNEPHROLOGY, Issue 4 2009DENISE V O'SHAUGHNESSY SUMMARY Treatment of chronic kidney disease (CKD) may be life-saving, but can disrupt every aspect of a patient's life and the lives of family members. Many patients with CKD are elderly with significant comorbidities and sometimes therapies to improve survival may be less important than those that improve or maintain quality of life. In this setting, patient-level benefits become particularly important goals of therapy. Randomized controlled trials (RCT) are also essential to justify expensive therapies, such as medications used in the treatment of CKD mineral and bone disorders. Surprisingly, data to support the efficacy of these drugs for patient-level outcomes remains limited. In fact, fewer RCT are conducted in renal medicine than in any other medical specialty and reliance is often placed on association data and the assessment of intermediate and biochemical end-points. While some of these may prove to be valid surrogates for clinically important outcomes, some may not. Inclusion of patient-level outcomes in clinical research provides a missing link that can inform a more comprehensive approach to clinical practice and patient care. Incorporating measures of health-related quality of life into clinical trials can make outcomes more relevant and may be relatively simple. This paper provides examples of reliable, validated instruments to measure health-related quality of life domains and functional status, together with practical instructions for their use. Most could be incorporated into RCT of CKD mineral and bone disorder treatments. Inclusion of outcomes that are perceived by patients to be significant should become standard practice in renal medicine and in clinical renal research. [source] Acute urodynamic effects of percutaneous posterior tibial nerve stimulation on neurogenic detrusor overactivity in patients with Parkinson's disease,NEUROUROLOGY AND URODYNAMICS, Issue 1 2009Sibel Canbaz Kabay Abstract Aims Lower urinary tract dysfunction is often occurs in patients with Parkinson's disease (PD), that is primarily induced by neurogenic detrusor overactivity (NDO) and negatively effect the quality of the patient's life. The aim of this study is to evaluate the acute effects of posterior tibial nerve stimulation (PTNS) on the urodynamic findings in the PD patients with NDO. Methods Thirty-two patients with PD (19 [59.3%] men and 13 [40.6%] women) with NDO were included in the study. Mean age of the patients was 64.2,±,8.7 years (range 44,78). Urodynamic studies before and during PTNS were performed. Electrical stimulation was applied unilaterally from the medial malleolus and posterior to the edge of the tibia by using charge-compensated 200 µsec pulses with a pulse rate of 20 Hz. Mean first involuntary detrusor (1st IDCV) contractions and means maximum cystometric capacity (MCC) before and during PTNS was compared. Results Mean 1st IDCV on standard cystometry was 145.2,±,41.1 (55,265) ml, while it was 244.7,±,51.7 (145,390) ml during PTNS. MCC on standard cystometry was 204.8,±,40.5 (115,320) ml, while it was 301.2,±,51.5 (230,395) ml during stimulation. Mean 1st IDC and mean MCC were significantly improved during PTNS. Conclusions These results have demonstrated the objective acute effect of PTNS on urodynamic parameters. PTNS is acutely effective to suppress detrusor overactivity in PD patients. Neurourol. Urodynam. 28:62,67, 2009. © 2008 Wiley-Liss, Inc. [source] Bone marrow-derived mesenchymal stem cells for regenerative medicine in craniofacial regionORAL DISEASES, Issue 6 2006M Miura The craniofacial region contains many specified tissues including bone, cartilage, muscle, blood vessels and neurons. Defect or dysfunction of the craniofacial tissue after post-cancer ablative surgery, trauma, congenital malformations and progressive deforming skeletal diseases has a huge influence on the patient's life. Therefore, functional reconstruction of damaged tissues is highly expected. Bone marrow-derived mesenchymal stem cells (BMMSCs) are one of the most well characterized postnatal stem cell populations, and considered to be utilized for cell-based clinical therapies. Here, the current understanding and the potential applications in craniofacial tissue regeneration of BMMSCs are reviewed, and the current limitations and drawbacks are also discussed. [source] Patients' Attitudes Toward Implanted Defibrillator ShocksPACING AND CLINICAL ELECTROPHYSIOLOGY, Issue 6 2000MAHA AHMAD In addition to its beneficial effect on patient survival, the implanted cardioverter defibriliator (ICD) changes a patient's life physically, socially, and psychologically. For improved patient management, it is important to understand the quality-of-life changes that accompany this mode of treatment. To this end, 119 patients were surveyed retrospectively and interviewed concurrently regarding their emotional, physical, and behavioral responses to ICD shocks and to the device itself. Most (55%) correctly estimated the total number of shocks they had received within a 10% margin. They found the shocks severe, 79% assigning a score between 3 and 5 on a scale of 1,5. Common descriptions of the shock sensation were a blow to the body or a spasm causing the entire body to jump. Most patients tolerated the shocks as life saving, but 23% dreaded shocks and 5% even said they would rather be without the ICD and take their chances. After a shock, 50% of patients called their physician and 42% continued their daily routine. Thirty percent went to a hospital emergency room or called a rescue service. Sixty-five percent had no preshock prodromes. Fifty-four percent were interested in the programmable option of a warning signal prior to a shock, while 31 % preferred no warning. Of the 74% who were advised not to drive after implantation, 29% drove anyway. Five patients were shocked while driving with no resulting accidents. We conclude that most patients find ICD shocks moderately uncomfortable, but they tolerate them because of the lifesaving protection provided by the device. [source] Advance Refusals of Life-Sustaining Medical Treatment: The Relativity of an Absolute RightTHE MODERN LAW REVIEW, Issue 6 2005Article first published online: 26 OCT 200, Sabine Michalowski English law gives the competent patient a right to refuse life-saving treatment, either contemporaneously or in an advance directive. This means that the patient's autonomous choice that in an anticipated situation his/her interests are better served by rejecting life-saving treatment needs to be respected. However, this right is undermined in practice by the courts' approach of applying a presumption in favour of preserving the patient's life whenever the validity and applicability of an advance directive is questioned. The article argues that the patient's right to refuse life-saving treatment only receives the respect it deserves if the decision whether or not a valid and applicable advance directive exists in a given case is instead be approached in an unbiased, disinterested way, and it analyses how this can be achieved in different scenarios. [source] Nutritional Effect of Dialysis TherapyARTIFICIAL ORGANS, Issue 3 2003Tsutomu Sanaka Abstract: The prognosis of patients with end-stage renal disease has been improved by the recent remarkable advances in medical and engineering technology. However, there are still many unsolved problems in the clinical field. One of the problems is an intractable malnutrition characterized by clinical manifestations including hypoproteinemia and decrease in muscular volume, which is associated with deterioration in the quality of the patient's life. Malnutrition in hemodialysis patients involves abnormal energy metabolism and aberrant amino acid metabolism. In the most malnourished patients, immunodefense mechanisms and homeostasis are disrupted, greatly influencing the prognosis. Moreover, when the performance of dialyzer used is too high, the dialysis treatment might remove a necessary nutrient for the patient. There is also a possibility that the protein catabolism is accelerated when the biocompatibility is inferior. On the other hand, in malnutri-tion, the circulating level of insulin-like growth factor-1 (IGF-1) falls while the level of insulin-like growth factor binding protein-1 (IGFBP-1) is remarkably increased. It has been recognized that IGF-1 and IGFBP-1 are indicators reflecting the initiation of a malnutritional state in patients with chronic renal failure, although there are many indicators such as albumin, prealbumin, and anthropometric measurement for nutritional assessment. We have suggested that r-hGH and IGF-1 improve the malnutritional state by alleviating hypoproteinemia and abnormality of serum amino acid profile in uremic patients on hemodialysis. The serum IGF-1/IGFBP-1 ratio is useful not only as a nutritional parameter but also as a predicting index of responsiveness to r-hGH. It is necessary to examine the problem from various angles to improve malnutrition in the dialysis patient, while considering the above mentioned. [source] Clinical assessment and management of the oral environment in the oncology patientAUSTRALIAN DENTAL JOURNAL, Issue 2010LJ Walsh Abstract The dental care of oncology patients is an important component of general dental practice. Oncology patients have additional requirements for their outpatient care in the dental office. Intense involvement of the general dental practitioner in the patient's overall plan of care is essential so that appropriate preventive and therapeutic strategies are followed prior to chemotherapy, radiation and other medical treatments. This paper provides an overview of the role of the dental practitioner in the pre-treatment workup and post-treatment maintenance of oncology patients, and discusses the complications which occur during the intensive and in-hospital phases of care, in the context of approaches that show promise for reducing or preventing these. The role of the general dental practitioner in the maintenance of oral health for the remainder of the patient's life is stressed, with evidence-based recommendations given for optimal use of home care products which support oral health and improve quality-of-life. [source] RESPONSIBILITY FOR CONTROL; ETHICS OF PATIENT PREPARATION FOR SELF-MANAGEMENT OF CHRONIC DISEASEBIOETHICS, Issue 5 2007BARBARA K. REDMAN ABSTRACT Patient self-management (SM) of chronic disease is an evolving movement, with some forms documented as yielding important outcomes. Potential benefits from proper preparation and maintenance of patient SM skills include quality care tailored to the patient's preferences and life goals, and increase in skills in problem solving, confidence and success, generalizable to other parts of the patient's life. Four central ethical issues can be identified: 1) insufficient patient/family access to preparation that will optimize their competence to SM without harm to themselves, 2) lack of acknowledgement that an ethos of patient empowerment can mask transfer of responsibility beyond patient/family competency to handle that responsibility, 3) prevailing assumptions that preparation for SM cannot result in harm and that its main purpose is to deliver physician instructions, and 4) lack of standards for patient selection, which has the potential to exclude individuals who could benefit from learning to SM. Technology assessment offers one framework through which to examine available data about efficacy of patient SM and to answer the central question of what conditions must be put in place to optimize the benefits of SM while assuring that potential harms are controlled. [source] Allergic rhinitis and quality of life: where are we?CLINICAL & EXPERIMENTAL ALLERGY REVIEWS, Issue 3 2003G. Majani Summary Health-Related Quality of Life (QoL) considers the impact of both illness and treatment on a patient's life as perceived by the patient himself. As well as providing information on how a disease affects a patient's life, QoL instruments could provide important information concerning the treatment outcomes. The SF-36 enlighted a significant impairment in eight of the nine QoL domains in patients with persistent allergic rhinitis, compared to healthy subjects. In seasonal rhinitis a patient's satisfaction profile does not show consistent changes before and after the pollen season. Adherence to treatment and caregivers' and relatives' QoL assessment still deserve more attention. In conclusion there is still a long way to go towards a full knowledge of QoL in allergic rhinitis. [source] Objective countertransference: do patients' interpersonal impacts generalize across therapists?CLINICAL PSYCHOLOGY AND PSYCHOTHERAPY (AN INTERNATIONAL JOURNAL OF THEORY & PRACTICE), Issue 1 2003Anton Hafkenscheid Objective countertransference refers to the constricted feelings, attitudes and reactions of a therapist, that are induced primarily by the patient's maladaptive behaviour and that are generalizable to other therapists (and to other significant others in the patient's life). In interpersonal theory and therapy, the equivalent of objective countertransference is the impact message concept. Impact messages refer to the cognitions, emotions and action tendencies evoked in the therapist by a particular patient's interpersonal pressures. This paper tests the interpersonal hypothesis that interpersonal impact generalizes across therapists (and by extension across interpersonal relationships). Generalizability of impact messages across therapists was determined for different combinations of therapist pairs, independently rating a total of 131 psychiatric outpatients with the IMI-C (Impact Message Inventory, revised circumplex version). It was found that impact messages were most clearly generalizable across therapists for the Dominance (D) category, followed by the Hostile,Dominant (HD) and Hostile,Submissive (HS) categories. In contrast, the other five categories of impact messages turned out to be poorly generalizable across therapists. Impact messages within the Dominance (D) category were also strikingly stable over a period of time of 12 months or longer. Some possible causes of the limited generalizability of most impact message categories are discussed. Copyright © 2002 John Wiley & Sons, Ltd. [source] Life satisfaction together with positive and negative aspects in Polish patients with systemic lupus erythematosusJOURNAL OF THE EUROPEAN ACADEMY OF DERMATOLOGY & VENEREOLOGY, Issue 3 2009L Kulczycka Abstract Purpose, To determinate satisfaction with life together with positive and negative emotions in SLE patients and correlate them with each other and with activity of the disease, duration of the disease and age of the patient. Methods, The study was conducted on 83 SLE patients who fulfilled at least 4 out of 11 ACR criteria. Satisfaction with life was measured by the Satisfaction with Life Scale. Positive and negative aspects were assessed by the Positive and Negative Affects Schedule. Other data were collected from the patients at the same time. Results, SLE patients presented reduced satisfaction with life. Duration of the disease, as well as age of the patients had an influence on it. Correlations between patients' quality of life emotions and life's satisfaction were present. Conclusions, SLE as a chronic, incurable and unpredictable disease has a great influence on patients' life. The awareness of this may lead to better compliance and to develop a new strategy of therapy. Conflicts of interest None declared [source] Myocardial tissue engineering: a reviewJOURNAL OF TISSUE ENGINEERING AND REGENERATIVE MEDICINE, Issue 5 2007H. Jawad Abstract Myocardial tissue engineering, a concept that intends to overcome the obstacles to prolonging patients' life after myocardial infarction, is continuously improving. It comprises a biomaterial based ,vehicle', either a porous scaffold or dense patch, made of either natural or synthetic polymeric materials, to aid transportation of cells into the diseased region in the heart. Many different cell types have been suggested for cell therapy and myocardial tissue engineering. These include both autologous and embryonic stem cells, both having their advantages and disadvantages. Biomaterials suggested for this specific tissue-engineering application need to be biocompatible with the cardiac cells and have particular mechanical properties matching those of native myocardium, so that the delivered donor cells integrate and remain intact in vivo. Although much research is being carried out, many questions still remain unanswered requiring further research efforts. In this review, we discuss the various approaches reported in the field of myocardial tissue engineering, focusing on the achievements of combining biomaterials and cells by various techniques to repair the infarcted region, also providing an insight on clinical trials and possible cell sources in cell therapy. Alternative suggestions to myocardial tissue engineering, in situ engineering and left ventricular devices are also discussed. Copyright © 2007 John Wiley & Sons, Ltd. [source] The meaning of psychosocial occupational therapy in a life-story perspective. a long-term follow-up of three casesOCCUPATIONAL THERAPY INTERNATIONAL, Issue 3 2003Mona Eklund Abstract This study is a long-term follow-up in narrative form of three former psychiatric patients who had been discharged eight to nine years earlier from an outpatient occupational therapy programme. The purpose of the study was to gain an understanding about the participants' views about the period of therapy from a long-term perspective and of how the outcome of therapy could be understood within the context of the patients' life plots. In-depth retrospective interviews and two former interviews with each participant, conducted at the time of therapy, comprised the data. The interview transcripts were subjected to narrative analysis. The fit between the characteristics of the therapy programme and important life themes of the informants seemed crucial for the long-term outcome of therapy, suggesting that taking life histories is important for occupational therapists in clinical practice in order to design appropriate interventions. Four components of the therapy, the activities, the social interaction, the milieu, and the therapeutic relationship, appeared as vital in re-shaping the informants' life plots. Copyright © 2003 Whurr Publishers Ltd. [source] Patients' experiences of the impact of periodontal diseaseJOURNAL OF CLINICAL PERIODONTOLOGY, Issue 4 2010Louise K. O'Dowd O'Dowd LK, Durham J, McCracken GI, Preshaw PM. Patients' experiences of the impact of periodontal disease. J Clin Periodontol 2010; 37: 334,339. doi: 10.1111/j.1600-051X.2010.01545.x. Abstract Aim: To examine critically patients' experiences of the impact of periodontal disease on their daily lives. Material and Methods: Semi-structured interviews of a purposive sample of patients with periodontal conditions were conducted using a flexible evolving topic guide. Data collection and analysis were an inductive, iterative process that occurred concurrently. The data were organized in a framework and recurrent themes identified. Interviews occurred until it was felt that no new themes or ideas were being expressed by respondents (n=14). Results: Effects of periodontal disease on patients' daily lives included impairment, functional limitation, discomfort and disability (including physical, psychosocial and social disability). A large number of the emergent themes from the analysis were relevant to the domains of Locker's conceptual model of oral health. The domain within Locker's model that had no data relevant to it in the context of periodontal disease was death. Two additional themes emerged that appeared unrelated to Locker's model, these were stigma and retrospective regret. Conclusion: Periodontal disease reportedly affects patients' lives in a negative manner in a variety of ways. This is of relevance in the management of patients with periodontitis. [source] Psoriasis: is the impairment to a patient's life cumulative?JOURNAL OF THE EUROPEAN ACADEMY OF DERMATOLOGY & VENEREOLOGY, Issue 9 2010AB Kimball Abstract Psoriasis is associated with significant physical and psychological burden affecting all facets of a patient's life , relationships, social activities, work and emotional wellbeing. The cumulative effect of this disability may be self-perpetuating social disconnection and failure to achieve a ,full life potential' in some patients. Health-related quality of life studies have quantified the burden of psoriasis providing predominantly cross-sectional data and point-in-time images of patients' lives rather than assessing the possible cumulative disability over a patient's lifetime. However, social and economic outcomes indicate there are likely negative impacts that accumulate over time. To capture the cumulative effect of psoriasis and its associated co-morbidities and stigma over a patient's life course, we propose the concept of ,Cumulative Life Course Impairment' (CLCI). CLCI results from an interaction between (A) the burden of stigmatization, and physical and psychological co-morbidities and (B) coping strategies and external factors. Several key aspects of the CLCI concept are supported by data similar to that used in health-related quality of life assessments. Future research should focus on (i) establishing key components of CLCI and determining the mechanisms of impairment through longitudinal or retrospective case,control studies, and (ii) assessing factors that put patients at increased risk of developing CLCI. In the future, this concept may lead to a better understanding of the overall impact of psoriasis, help identify more vulnerable patients, and facilitate more appropriate treatment decisions or earlier referrals. To our knowledge, this is a first attempt to apply and develop concepts from ,Life Course Epidemiology' to psoriasis research. [source] The Arabic ICIQ-UI SF: An alternative language version of the English ICIQ-UI SFNEUROUROLOGY AND URODYNAMICS, Issue 3 2006H. Hashim Abstract Aims Urinary incontinence (UI) is a common and distressing condition. A variety of questionnaires are currently available to assess UI and its impact on patients' lives. However, most have not been adapted for international use. Following a systematic review of the literature and existing questionnaires the International Consultation on Incontinence short form questionnaire (ICIQ-UI SF) was developed, and has since been translated into many languages for local use. This paper reports the development and validation of the first UI questionnaire in the Arabic language. The development of this questionnaire will facilitate the assessment of UI in both clinical practice and research in the Middle-East. Methods Translation and validation of the Arabic version of the ICIQ-UI is described. Standard methods of translation by native Arabic and English speakers (including translation and back translation) are followed. The psychometric properties of the questionnaire, including its validity, reliability and sensitivity to change, are examined. The validation of the questionnaire involved patients attending urology outpatient clinics in two Middle-Eastern countries. Results The Arabic ICIQ-UI SF was found to be valid, reliable and responsive, indicating that the psychometric properties of the questionnaire have remained constant throughout the adaptation process. Furthermore, the findings of the psychometric testing confirm those found for the UK-English ICIQ-UI SF. Conclusions The development of this questionnaire will allow the study of Arabic speaking groups with UI in many countries around the world. This may act as an example to initiate the translation and validation of other patient reported outcomes into the Arabic language, thereby enabling more multinational and cross-cultural research into diseases in given areas. Neurourol. Urodynam. © 2006 Wiley-Liss, Inc. [source] Does ICD Indication Affect Quality of Life and Levels of Distress?PACING AND CLINICAL ELECTROPHYSIOLOGY, Issue 2 2009SUSANNE S. PEDERSEN Ph.D. The implantable cardioverter defibrillator (ICD) is the treatment of choice for life-threatening arrhythmias, with ICD indications having recently been extended to include primary prophylaxis. Despite the medical benefits of the ICD, there is an ongoing debate as to the impact of the ICD on patients' lives, particularly whether primary prophylaxis implantation may impact adversely on patient-centered outcomes such as quality of life (QoL) and distress. We examined the evidence for a role of ICD indication on these patient-centered outcomes. A literature search was conducted on PubMed and Web of Science from 2002 to present, focusing on indication for ICD therapy and patient-centered outcomes (i.e., anxiety, depression, disease-specific, or general QoL). We identified five studies (seven articles) concerning the impact of indication on patient-centered outcomes. Sample sizes varied from 91,426 patients across studies, five of seven articles used a prospective design, and follow-up ranged from 2,12 months. No study reported an effect for indication on patient-centered outcomes. There is no evidence to suggest that patients receiving an ICD for primary prophylaxis have subsequent poorer QoL and greater distress than patients receiving an ICD for secondary prophylaxis. This knowledge may help cardiologists in the clinical management of patients, in particular when discussing ICD implantation with patients. [source] The Prevalence and Impact of Chronic Pain with Neuropathic Pain Symptoms in the General PopulationPAIN MEDICINE, Issue 5 2009Cory Toth BSc, FRCPC ABSTRACT Objective., We performed a prevalence estimate of chronic pain with neuropathic pain (NeP) symptoms to determine its frequency and associations with morbidity. Design., We conducted a telephone-based survey based upon a random sampling of both urban and rural households of the general population in one Canadian province to determine NeP prevalence and its impact upon financial well-being and quality of life. Outcome Measures., Telephonic use of the DN4 questionnaire (DN4Q), used to identify NeP symptoms in those patients with chronic pain, was validated within selected clinical populations of chronic pain. Epidemiological data was obtained for all subjects. EuroQoL (EQ)-5D data estimating quality of life was measured. Results., Chronic pain was present in 35.0% of the surveyed population of 1,207 subjects, with NeP symptoms present in 17.9%. The NeP group had significantly more pain, was female predominant, had a greater belief of being economically disadvantaged, suffered from more restrictions in mobility and in usual activities, and had overall lower EQ-5D utility scores compared with subjects with non-NeP. DN4Q validation demonstrated that pain entities not normally defined as NeP are recorded as such using the DN4Q, and that a spectrum of NeP features may occur across a host of painful conditions. Conclusion., Despite limitations of the DN4Q, symptoms of NeP may be more prevalent in the general population than expected and has a greater impact upon patients' lives than non-NeP. Limitations of the DN4Q may relate to the concept of a spectrum of NeP existent amongst heterogenous NeP and non-NeP syndromes. [source] Addressing Political and Racial Terror in the Therapeutic RelationshipAMERICAN JOURNAL OF ORTHOPSYCHIATRY, Issue 1 2005Pratyusha Tummala-Narra PhD Political and racial terror have important implications for the process of psychotherapy. This type of trauma can have unique effects on individual psychology and the larger social context of patients' lives that are distinct from other types of interpersonal trauma. Several intrapsychic processes, such as one's experience of mirroring, fear of annihilation, identification and internalization of aggression, the collective remembering of trauma, and subsequent mourning, are transformed through one's experiences of political and racial terror. Clinical illustrations of 2 patients treated in psychotherapy before and after the terrorist attacks of September 11, 2001, elaborate these effects of political and racial trauma. The implications of addressing these types of traumatic experience in psychotherapy, including issues of therapeutic neutrality, are discussed. [source] Working toward consensus: Providers' strategies to shift patients from curative to palliative treatment choicesRESEARCH IN NURSING & HEALTH, Issue 4 2001Sally A. Norton Abstract End-of-life decision making is a complex phenomenon and providers, patients, and families often have different views about the appropriateness of treatment choices. The results presented here are part of a larger grounded-theory study of reconciling decisions near the end of life. In particular, we examined how providers (N,=,15) worked near the end of patients' lives toward changing the treatment decisions of patients and families from those decisions that providers described as unrealistic (i.e., curative) to those that providers described as more realistic (i.e., palliative). According to providers, shifting patients' and families' choices from curative to palliative was usually accomplished by changing patients' and families' understanding of the patient's overall "big picture" to one that was consistent with the providers' understanding. Until patients and families shifted their understanding of the patient's condition,the big picture,they continued to make what providers judged as unrealistic treatment choices based on an inaccurate understanding of what was really going on. These unrealistic choices often precluded possibilities for a "good death." According to providers, the purpose of attempting to shift the patient or proxy's goals was that realistic goals lead to realistic palliative treatment choices that providers associated with a good death. In this article we review strategies used by providers when they believed a patient's death was imminent to attempt to shift patients' and families' understandings of the big picture, thus ultimately shifting their treatment decisions. © 2001 John Wiley & Sons, Inc. Res Nurs Health 24:258,269, 2001 [source] Quality of life issues in nonmetastatic skin cancerBRITISH JOURNAL OF DERMATOLOGY, Issue 1 2010D. Burdon-Jones Summary Background, Current knowledge of quality of life (QOL) issues affecting patients with nonmetastatic skin cancer is unsatisfactory, being based either on the use of QOL questionnaires derived from dermatology patients with predominantly benign lesions or inflammatory skin rashes, or on the use of general health QOL questionnaires. Objectives, We sought to determine the impact of nonmetastatic skin cancer on patients' lives by asking such patients for their written opinions. Methods, An open-ended ,Skin Cancer Quality of Life Question Sheet' was given to 100 consenting patients with nonmetastatic skin cancer [50 with malignant melanoma (MM) and 50 with nonmelanoma skin cancer (NMSC)]. Results, In total, 82 ,Skin Cancer Quality of Life Question Sheets' were returned complete (40 MM and 42 NMSC). There were 44 different patient concerns voiced overall in the responses. The concerns were grouped into 10 main themes. Patients with MM were significantly more likely than those with NMSC to mention ,a sense of relief/gratitude following treatment and/or a commitment to enjoy life here on' (P = 0·001), ,feelings of anxiety/depression/guilt/stress towards oneself or family/friends' (P < 0·001) and ,strengthening of emotional relationships with family and/or friends' (P = 0·02). Patients with NMSC were significantly more likely than those with MM to mention ,concern about the public's lack of understanding and recognition of skin cancer' (P = 0·02). The theme ,realization of one's mortality' was commoner among patients with MM than with NMSC, while the theme ,concern regarding possible scarring/disfigurement or the reaction of others' was commoner among patients with NMSC than with MM, although neither of these two differences was statistically significant (P = 0·07 and P = 0·11, respectively). Conclusions, QOL issues expressed by patients with nonmetastatic skin cancer highlight concerns we must address during their care. A disease-specific QOL measure suitable for both nonmetastatic MM and nonmetastatic NMSC is needed. The psychosocial impact on patients with nonmetastatic MM must not be underestimated. [source] |