176 research outputs found
Heart in art: cardiovascular diseases in novels, films, and paintings.
BACKGROUND: Understanding representations of disease in various art genres provides insights into how patients and health care providers view the diseases. It can also be used to enhance patient care and stimulate patient self-management. METHODS: This paper reviews how cardiovascular diseases are represented in novels, films, and paintings: myocardial infarction, aneurysm, hypertension, stroke, heart transplantation, Marfan's disease, congestive heart failure. Various search systems and definitions were used to help identify sources of representations of different cardiovascular diseases. The representations of the different diseases were considered separately. The Common Sense Model was used a theoretical model to outline illness perceptions and self-management in the various identified novels, films, and paintings. RESULTS: Myocardial infarction followed by stroke were the most frequently detailed diseases in all three art genres. This reflects their higher prevalence. Representations ranged from biomedical details through to social and psychological consequences of the diseases. CONCLUSIONS: Artistic representations of cardiovascular diseases reflect cognitions, emotions, and images of prevalent disease. These representations shape views and behaviour of ill and healthy persons regarding heart diseases. As these representations are amenable to change, they deserve further research, which may be instrumental in improving the quality of life of persons struck by cardiovascular diseases. Changing illness perceptions appears to be a method to improve self-management and thereby quality of life in patients with various cardiovascular diseases
Stage 1 Development of a Patient Reported Experience Measure (PREM) for Chronic Obstructive Pulmonary Disease (COPD)
The study aimed to explore patientsâ experience of living with COPD and their perspective of their community health care for COPD to extract affective responses in order to develop potential items for a patient reported experience measure (PREM) for Chronic Obstructive Pulmonary Disease (COPD). Qualitative face-face interviews were conducted, in the community, with 64 patients with COPD recruited from General Practices and Breath-Easy community groups in the Outer North East, East and City, London and Essex, UK.
A two phase analysis of the qualitative data was conducted to identify themes arising from patientsâ description of living with COPD and their perceptions of their community health care and subsequently the affective responses underlying the themes raised by patients, which gave emotional colour to the themes, bringing the thematic analysis closer to the subjective patient experience.
Five themes were identified from the interview data: âJourney to diagnosisâ; âSmokingâ; âUsual careâ; âMy everyday lifeâ; and âExacerbationsâ. Twenty affective responses were identified and categorised as either ânegativeâ, âpositiveâ or âbivalentâ. âFrustrationâ, a negative affective response was prevalent in four themes. âGratitudeâ, âhopeâ and âhappiness/enjoymentâ were among the more positive responses more prevalent across several themes.
By conducting a novel two-way analysis (thematic and affective) it was possible to identify themes and affective responses that were aligned to those themes. This enabled the development of 38 COPD specific experience items to take forward for further testing including item reduction and validity and reliability in the next stage of the PREM development
Psychosocial determinants of adherence with oral anticancer treatment: 'we don't need no education'
INTRODUCTION: Given the potentially fatal consequences of inadequate adherence with oral anticancer treatment in persons with cancer, understanding the determinants of adherence is vital. This paper aims at identifying psychosocial determinants of adherence to oral anticancer treatment. METHODS: We reviewed the literature on psychosocial determinants of adherence with oral anticancer treatment, based on published literature in English, from 2015 to present. Literature searches were performed in PubMed, Embase, Web of Science, Cochrane library, Emcare, and PsychINFO, with 'cancer', 'medication adherence', 'psychology', and 'oral anticancer treatment' as search terms. The obtained 608 papers were screened by two independent reviewers. RESULTS: In the 25 studies identified, illness perceptions, medication beliefs, health beliefs, and depression were found to be the major psychosocial determinants of adherence to oral anticancer treatment; sociodemographic and clinical characteristics were found to be of no major importance. The quality of the identified studies as assessed by two independent reviewers was found to be acceptable overall. The majority of papers were from North America and focused on patients with breast cancer; sample size varied from 13 to 1371; adherence was assessed with questionnaires derived from various theoretical models, pill counts and electronic pharmacy records; illness perceptions reflecting adaptive coping, and medication beliefs reflecting high necessity and low concerns were found to be associated with adherence. CONCLUSION: Psychosocial concepts are major determinants of adherence with oral anticancer treatment. 'Beliefs about medicines' and 'illness perceptions' in particular determine adherence with this treatment. Studies aiming at impacting adherence would benefit from interventions with a solid basis in behavioral theory in order to help health care providers explore and address illness perceptions and medication beliefs. Pre-consultation screening of adherence behavior may be a helpful supportive approach to improve adherence. Blaming the victim ('patients should be educated about the importance of adherence') is better replaced by encouraging health professionals to identify and address maladaptive psychosocial determinants of adherence
Quality of life in patients with advanced gastric cancer: a randomized trial comparing docetaxel, cisplatin, 5-FU (TCF) with epirubicin, cisplatin, 5-FU (ECF)
BACKGROUND: Health related quality of life (HRQOL) is an important outcome after treatment for upper gastrointestinal carcinoma. This study aimed to compare HRQOL in patients with advanced gastric cancer (GC) receiving either a standard or an experimental treatment. METHODS: Seventy-one patients have been treated in Cancer Institute (Tehran, Iran) with docetaxel, cisplatin, 5 FU (TCF) or epirubicin, cisplatin, 5-FU (ECF) and were followed from Jan 2002 to Jan 2005. End points were response rate, HRQOL and survival. HRQOL was assessed using the EORCT QLQ-C30 at baseline and after the third cycle of chemotherapy. RESULTS: The baseline HRQOL scores were comparable between two groups. After treatment improvement was seen in a number of items and domains except for cognitive functioning, and diarrhoea. Pain decreased and physical functioning improved in both groups. However, only the TCF group showed statistically and clinically meaningful improvement in global QOL (P = 0.001). Surgical and pathologic response was better with TCF but there was no difference in survival rate between two groups. CONCLUSION: Docetaxel based treatment (TCF) showed better palliation and improvement of global QOL as compared with epirubicin based treatment (ECF). However, it seems that regardless of treatment offered, effective chemotherapy was the most important factor affecting QOL in these patients
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Health-related quality of life in Huntingtonâs Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntingtonâs Disease health-related quality of life questionnaire (HDQoL)
Huntingtonâs disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. Proxy evaluation is relevant for HD as its manifestation might limit the ability of persons to report their health-related quality of life (HrQoL). This study explored patientâproxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings. A total of 105 patientâproxy pairs completed the Huntingtonâs disease health-related quality of life questionnaire (HDQoL) and other established HrQoL measures (EQ-5D and SF-12v2). Proxyâpatient agreement was assessed in terms of absolute level (mean ratings) and intraclass correlation. Proxiesâ ratings were at a similar level to patientsâ self-ratings on an overall Summary Score and on most of the six Specific Scales of the HDQoL. On the Specific Hopes and Worries Scale, proxies on average rated HrQoL as better than patientsâ self-ratings, while on both the Specific Cognitive Scale and Specific Physical and Functional Scale proxies tended to rate HrQoL more poorly than patients themselves. The patientâs disease stage and mental wellbeing (SF-12 Mental Component scale) were the two factors that primarily affected proxy assessment. Proxy scores were strongly correlated with patientsâ self-ratings of HrQoL, on the Summary Scale and all Specific Scales. The patientâproxy correlation was lower for patients at moderate stages of HD compared to patients at early and advanced stages. The proxy report version of the HDQoL is a useful complementary tool to self-assessment, and a promising alternative when individual patients with advanced HD are unable to self-report
Quality of life in patients with gastric cancer: translation and psychometric evaluation of the Iranian version of EORTC QLQ-STO22
<p>Abstract</p> <p>Background</p> <p>Disease and treatment related events, can adversely affect the quality of life of patients with cancer. The purpose of this study was to translate and validate a gastric cancer specific health related quality of life questionnaire (EORTC QLQ-STO22) for Iranian patients suffering from gastric cancer.</p> <p>Methods</p> <p>Forward-backward procedure was applied to translate the English language version of the EORTC QLQ-STO22 into Persian (Iranian language). Then, the questionnaire and the EORTC core quality of life instrument (QLQ-C30) were administered to a sample of patients with confirmed diagnosis of gastric cancer. All patients filled in questionnaires before and after one month of treatment. Patients were divided into two groups based on intension of treatment (curative vs. palliative). Reliability and validity of the module was tested by internal consistency and known group comparisons, respectively.</p> <p>Results</p> <p>In all, 105 patients were entered into the study. Cronbach's alpha for multi-item scales (to test reliability) ranged from 0.54 to 0.87. The questionnaire discriminated well between clinically distinct subgroups of patients both before and after treatment lending support to its convergent and clinical validity.</p> <p>Conclusion</p> <p>Overall, the Iranian version of the EORTC QLQ-STO22 demonstrated a good reliability and clinical validity to support its use in combination with core questionnaire in outcome studies of gastric cancer in Iran. However, using the QLQ-STO22 in a wide range of Iranian patients with gastric cancer should allow further confirmation for its psychometric properties.</p
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The development and validation of the Leiden Bother and Needs Questionnaire for patients with pituitary disease: the LBNQ-Pituitary
Background
Patients report persisting impairment in quality of life (QoL) after treatment for pituitary disease. At present, there is no questionnaire to assess (a) whether patients with pituitary disease are bothered by these consequences, and (b) their needs for support.
Objective
To develop and validate a disease-specific questionnaire for patients with pituitary disease which incorporates patient perceived bother related to the consequences of the disease, and their needs for support.
Methods
Items for the Leiden Bother and Needs Questionnaire for patients with pituitary disease (LBNQ-Pituitary) were formulated based on results of a recent focus group study (n = 49 items). 337 patients completed the LBNQ-Pituitary and six validated QoL questionnaires (EuroQoL-5D, SF-36, MFI-20, HADS, AcroQol, CushingQoL). Construct validity was examined by exploratory factor analysis. Reliabilities of the subscales were calculated with Cronbachâs alphas, and concurrent validity was assessed by calculating Spearmanâs correlations between the LBNQ-Pituitary and the other measures.
Results
Factor analyses produced five subscales (i.e., mood problems, negative illness perceptions, issues in sexual functioning, physical and cognitive complaints, issues in social functioning) containing a total of 26 items. All factors were found to be reliable (Cronbachâs alphas all â„.765), and the correlations between the dimensions of the LBNQ-Pituitary and other questionnaires (all P †.0001) demonstrated convergent validity.
Conclusions
The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also facilitate an efficient assessment of patientsâ needs for support in clinical practice. We postulate that paying attention to needs for support will lead to optimal patient care (e.g., improvement in psychosocial care), and positively affect QoL
Biophysical and electrochemical studies of protein-nucleic acid interactions
This review is devoted to biophysical and electrochemical methods used for studying protein-nucleic acid (NA) interactions. The importance of NA structure and protein-NA recognition for essential cellular processes, such as replication or transcription, is discussed to provide background for description of a range of biophysical chemistry methods that are applied to study a wide scope of protein-DNA and protein-RNA complexes. These techniques employ different detection principles with specific advantages and limitations and are often combined as mutually complementary approaches to provide a complete description of the interactions. Electrochemical methods have proven to be of great utility in such studies because they provide sensitive measurements and can be combined with other approaches that facilitate the protein-NA interactions. Recent applications of electrochemical methods in studies of protein-NA interactions are discussed in detail
Relação entre a magnitude de sintomas e a qualidade de vida: anålise de agrupamentos de pacientes com cùncer de pulmão no Brasil
OBJECTIVE: Lung cancer patients often experience profound physical and psychosocial changes as a result of disease progression or treatment side effects. Fatigue, pain, dyspnea, depression, and sleep disturbances appear to be the most common symptoms in such patients. The objective of the present study was to examine the prevalence of symptoms in lung cancer patients in order to identify subgroups (clusters) of patients, grouped according to the magnitude of the symptoms, as well as to compare the quality of life among the identified subgroups. METHODS: A cross-sectional study involving agglomerative hierarchical clustering. A total of 50 lung cancer patients were evaluated in terms of their demographic characteristics and their scores on three quality of life questionnaires, namely the 30-item European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), the Functional Assessment of Cancer Therapy-Lung, and the Medical Outcomes Study 36-item Short-form Survey. The cluster analysis took into account the magnitude of the most prevalent symptoms as assessed by the EORTC QLQ-C30 symptom scale scores; those symptoms were fatigue, pain, dyspnea, and insomnia. RESULTS: Three clusters (subgroups)_of patients were identified on the basis of the magnitude of the four most prevalent symptoms. The three subgroups of patients were as follows: patients with mild symptoms (n = 30; 60%); patients with moderate symptoms (n = 14; 28%); and patients with severe symptoms (n = 6; 12%). The subgroup of patients with severe symptoms had the worst quality of life, as assessed by the total scores and by the integrated domains of all three instruments. CONCLUSIONS: This study highlights the importance of symptom cluster assessment as an important tool to assess the quality of life of patients with chronic diseases, such as lung cancer.OBJETIVO: Muitas vezes pacientes com cĂąncer de pulmĂŁo vivenciam mudanças fĂsicas e psicossociais profundas que resultam da progressĂŁo da doença ou dos efeitos colaterais do tratamento. Fadiga, dor, dispneia, depressĂŁo e distĂșrbios do sono parecem ser os sintomas mais comuns nesses pacientes. O objetivo deste estudo foi examinar a prevalĂȘncia de sintomas em pacientes com cĂąncer de pulmĂŁo a fim de identificar subgrupos (clusters) de pacientes, agrupados de acordo com a magnitude dos sintomas, bem como comparar os subgrupos quanto Ă qualidade de vida. MĂTODOS: Estudo transversal utilizando agrupamento hierĂĄrquico aglomerativo. Foram avaliadas as caracterĂsticas demogrĂĄficas de 50 pacientes com cĂąncer de pulmĂŁo, bem como sua pontuação em trĂȘs questionĂĄrios de qualidade de vida: o 30-item European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), o Functional Assessment of Cancer Therapy-Lung e o Medical Outcomes Study 36-item Short-form Survey. A anĂĄlise de agrupamentos (clusters) levou em conta a magnitude dos sintomas de maior prevalĂȘncia de acordo com as escalas de sintomas do EORTC QLQC-30; esses sintomas foram fadiga, dor, dispneia e insĂŽnia. RESULTADOS: Foram identificados trĂȘs agrupamentos (subgrupos) de pacientes, baseados na magnitude dos quatro sintomas mais prevalentes. Os trĂȘs subgrupos de pacientes foram os seguintes: pacientes com sintomas leves (n = 30; 60%); pacientes com sintomas moderados (n = 14; 28%) e pacientes com sintomas graves (n = 6; 12%). O subgrupo de pacientes com sintomas graves apresentou a pior qualidade de vida, conforme mensurada pelos escores totais e pelas dimensĂ”es integradas dos trĂȘs instrumentos. CONCLUSĂES: Este estudo destaca a importĂąncia da avaliação de agrupamentos de sintomas como uma ferramenta relevante para medir a qualidade de vida de pacientes com doenças crĂŽnicas, como o cĂąncer de pulmĂŁo.Universidade Federal de SĂŁo Paulo (UNIFESP)UNIFESPSciEL
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