‘Translation is not enough’: using the Global Person Generated Index (GPGI) to assess individual quality of life in Bangladesh,Thailand, and Ethiopia

Currently few subjective measures of Quality of Life (QoL) are available for use in developing countries, which limits their theoretical, methodological, and practical contribution (for example, exploring the relationship between economic development and QoL, and ensuring effective and equitable service provision). One reason for this is the difficulty of ensuring that translated measures preserve conceptual, item, semantic, operational, measurement; and functional equivalence (Herdman, M., Fox-Rushby, J., & Badia, X. (1998). Quality of Life Research, 7, 331), which is illustrated by an account of the translation, pre-piloting, and administration of a new individualised QoL measure, the Global Person Generated Index or 'GPGI'. The GPGI is based on the widely used Patient Generated Index (Ruta, Camfield, & Martin, (2004) Quality of Life Research, 13, 1545.) and offers many of the advantages of the participatory approaches commonly used in developing countries, with added methodological rigour, and quantitative outcomes. It was successfully validated in Bangladesh, Thailand, and Ethiopia, using quantitative and qualitative methods--open-ended, semi-structured interviews (SSIs), conducted immediately post-administration. Both the measure and method of 'qualitative validation' described later in the paper offer an exciting alternative for future researchers and practitioners in this field. The quantitative results suggest the GPGI shows cultural sensitivity, and is able to capture both the areas that are important to respondents, and aspects of life one would expect to impact on QoL in developing countries. There were strong correlation between scores from the GPGI and SSIs for the area of health, and moderate correlations for 'material wellbeing' (MWB)('Material wellbeing' refers to respondents' perceptions of their achievement in the areas of farming, debt reduction, assets, crops, livestock, job, land, property, and agriculture) and children. Weak to moderate correlations were observed between the Satisfaction with Life Scale and the GPGI; however, the highest coefficient was between the GPGI and the most conceptually similar item. Statistically significant differences were seen in GPGI scores between rich and poor, urban and rural respondents, and different countries. Health and material wellbeing scores, derived from the SSIs, also showed a linear relationship with GPGI scores, with a suggestion of curvilinearity at the higher levels, as predicted by a general QoL causal model. In conclusion, the GPGI has great potential for use in this area, especially when supported by extensive interviewer training, and supplemented with a cognitive appraisal schedule.     

用秩和比法对我院的10个公示病种医疗质量进行综合评价

目的对我院2005年度公示的10个病种进行医疗质量综合评价。方法采用秩和比法(RSR)进行统计分析。结果我院的10个公示病种被划分成4个医疗质量等级:老年性白内障、小儿支气管肺炎2个病种质量为优,急性阑尾炎、腹股沟疝(单侧)、子宫平滑肌瘤、剖宫产4个病种质量为良,胃大切、脑梗塞、急性心肌梗塞3个病种质量为中,脑出血1个病种质量为差。结论通过对综合指数秩和比(RSR)的计算并根据其值分级归档,反映出所研究病种之间存在着医疗质量高低的差异。控制和降低本院临床常见病种的医药费用,进行医疗全程连续性控制,为患者提供经济有效的医疗服务。     

Impact of cosmetic care on quality of life in breast cancer patients during chemotherapy and radiotherapy: an initial randomized controlled study

BACKGROUND: Breast cancer is the most common cancer in women and therefore represents a major problem in public health. Data from patients' self-report questionnaires provide valuable information about the side-effects that patients may view as having a significantly detrimental impact on their quality of life (QOL) and yet are not always recognized as important by healthcare professionals. Cosmetology is a specific care for patients and there is actually no scientific evidence regarding effects on QOL for women with breast cancer. OBJECTIVE: The purpose of this study is to assess the impact of cosmetic care on QOL in breast cancer patients during chemotherapy and radiotherapy. METHODS: We developed a prospective, multicentre, randomized, controlled study including 27 patients. All the patients had to fill in a French-validated dermatologic specific quality-of-life questionnaire to compare the QOL of the two groups, the cosmetic group and the control group, at three different times of the adjuvant treatment. RESULTS: The results show a statistically significant difference between the cosmetic group and the control group in two areas of QOL: mood state and self-perception of the disease. CONCLUSION: This study emphasizes the interest of cosmetic care in breast cancer patients. However, further larger trials are needed to confirm this study.     

现代中医药发展战略思考

建国几十年来，由于党和政府的大力提倡和扶持，中医药得到了很大发展，但相对于西医的发展势头仍显不足。尤其是近10多年来，由于现代科技及现代管理学的有力推动，西医获得了突飞猛进的发展，然而，中医却由于种种原因发展相对缓慢。在这各行各业竞相发展的现代社会，中医要生存，就蓝须发展，中医要发展，就妊须总揽全局，从战略高度克服中医药发展的各种不利因素，充分发挥各方面的有利条件。     

Natural killer cell activity and quality of life were improved by consumption of a mushroom extract, Agaricus blazei Murill Kyowa, in gynecological cancer patients undergoing chemotherapy

A mushroom extract, Agaricus blazei Murill Kyowa (ABMK), has been reported to possess antimutagenic and antitumor effects. Here, we investigate the beneficial effects of ABMK consumption on immunological status and qualities of life in cancer patients undergoing chemotherapy. One hundred cervical, ovarian, and endometrial cancer patients were treated either with carboplatin (300 mg / m(2)) plus VP16 (etoposide, 100 mg / m(2)) or with carboplatin (300 mg / m(2)) plus taxol (175 mg / m(2)) every 3 weeks for at least three cycles with or without oral consumption of ABMK. We observed that natural killer cell activity was significantly higher in ABMK-treated group (ANOVA, n = 39, P < 0.002) as compared with nontreated placebo group (n = 61). However, no significant difference in lymphokine-activated killer and monocyte activities was observed in a manner similar to the count of specific immune cell populations between ABMK-treated and nontreated groups. However, chemotherapy-associated side effects such as appetite, alopecia, emotional stability, and general weakness were all improved by ABMK treatment. Taken together, this suggests that ABMK treatment might be beneficial for gynecological cancer patients undergoing chemotherapy.     

Performance measures for evaluating services for people with a first episode of psychosis

Aim: The purpose of this project was to operationalize and apply a previously identified set of performance measures designed to evaluate services for those experiencing a first episode of a schizophrenia spectrum disorder. Methods: Operational definitions were developed for previously identified measures through an iterative process of discussions between clinical experts and health‐care evaluators. Data were collected from existing sources including corporate databases, clinical databases and chart review. Results: Definitions were developed for 44 measures covering seven of eight domains recommended for service level evaluation by the Canadian Institute for Health Information domains. Forty measures could be calculated. Conclusions: The measures represent a comprehensive set of performance measures suitable for the evaluation of services for people with a first‐episode psychosis. The measures could be used by other services in order to establish standards and norms for routine clinical practice.     

Effect of short daily home haemodialysis on quality of life, cognitive functioning and the electroencephalogram.

BACKGROUND: End-stage renal disease patients have a poor quality of life (QoL), suffer from impaired cognitive functioning, and their electroencephalogram (EEG) shows abnormalities. Conventional haemodialysis (CHD) only partially restores these disorders. Short daily haemodialysis (SDHD) has been reported to improve QoL, but effects on cognitive functioning and EEG have yet to be described. METHODS: Of the 13 patients (11 male, 2 female, age 45.5 +/- 8.1 years), 11 completed the Kidney Disease Quality of Life and Affect Balance Scale questionnaires, 10 underwent neuropsychological testing, and all 13 underwent EEG examination. For the neuropsychological assessments, nine patients (six male, three female, age 45.4 +/- 12.6) who remained on the CHD schedule, served as controls. The dialysis schedule of thrice-a-week for 4 h was changed in the experimental group to six times a week for 2 h (SDHD) over a period of 6 months and back to thrice a week for 4 h. RESULTS: When on SDHD, patients rated several dimensions of health-related QoL as being improved. After resuming CHD, one of these dimensions again decreased and several others worsened even lower than baseline. Cognitive functioning did not change when compared with control data. On the EEG, alpha peak frequency increased slightly when on SDHD but decreased significantly after resuming CHD. CONCLUSIONS: SDHD improves health-related QoL, but has no clear effects on cognitive functioning and EEG. Resumption of CHD after SDHD decreases aspects of QoL and EEG alpha peak frequency but has no effect on cognitive functioning.     

Time to REST: epidemiology and burden

Restless legs syndrome (RLS) is a neurological disorder characterized by a compelling urge to move, accompanied by disturbing sensations within the legs. It is now recognized that RLS is a common condition that has a substantial impact on sleep, daily activities and quality of life. Recent data from the REST (RLS Epidemiology, Symptoms, and Treatment) general population study show that symptoms of RLS are present in approximately 7% of the general population, and that 2–3% experience moderate or severe symptoms at least twice a week. Amongst this RLS cohort, approximately 88% reported sensory disturbances and 76% reported sleep-related symptoms. These symptoms had a marked effect on everyday life, with up to 50% of the RLS cohort reporting disruption of everyday activities or personal relationships. Sleep disturbances in turn lead to impaired daytime functioning. RLS is associated with a significant impairment of quality of life, comparable with that seen in chronic medical conditions such as diabetes or depression. Given the significant burden of morbidity associated with RLS, there is a strong case for treatment in patients with troublesome symptoms.     

Well-being (quality of life) in connection with hypertensive treatment

Quality of life is often considered to equate how the medical treatment is subjectively perceived by the patient, but ought to include the total impact of the disease/treatment on the patient's emotional, physical, and social well-being. Recently, a proposal for a generally applicable definition of quality of life in health care was put forward. This definition includes general well-being, health, and welfare (external factors), as three fundamental components, and the definition is based on both objective and subjective judgments. General well-being is exclusively and expression of the individual's subjective experience and is based on his or her own qualitative evaluation of well-being in relation to condition, treatments, and experiences. Health is according to the proposed definition, judged both objectively (signs) and subjectively (symptoms). Apart from health and well-being, there is also reason to include objectively registrable factors at the welfare level (external factors) such as the consumption of medicines, number of days in hospital, length of sick leave, need of in-home care, etc. This review is an attempt to elucidate the effects of antihypertensive pharmacotherapy on the patient's general well-being. The topic will be discussed from several points of views (e.g., aims of antihypertensive treatment, occurrence of symptoms in the population, compliance with prescribed treatment, symptom inventories, the concept of quality of life.     

子宫切除术对生存质量的影响

目的：研究子宫切除术对生存质量的影响。方法：对108例因良性疾病而行腹式子宫切除术者进行前瞻性队列研究，术前及术后3，6，12个月进行调查问卷，观察症状、泌尿及胃肠功能、性功能、心理状况、社会生活状态的变化。结果：子宫切除术后3个月症状、压抑、焦虑程度减轻，社会生活状态显著提高，泌尿及胃肠功能、性功能无改变，这些改善持续至术后12个月。结论：子宫切除术可有效缓解妇科良性疾病所产生的症状，症状的缓解有利于改善生存质量。大多数因妇科良性疾病而行腹式子宫切除术的妇女，在术后1年，生存质量提高。