成人癫痫患者生活质量影响因素的调查和分析

目的调查和分析成人癫痫患者生活质量的影响因素，为采取多方面的措施以全面提高患者的生活质量提供理论依据。方法采用癫痫患者生活质量量表-31（QOLIE-31）中文版，对107例成人癫痫患者的生活质量进行评估，调查内容包括一般资料及QOLIE-31中文版的调查项目。对可能影响患者生活质量的因素进行单因素和多因素分析，确定影响患者生活质量的因素。结果婚姻状况、性别、职业类型、病程、发作类型、年龄、抗癫痫药物类型和抗癫痫药物数目不是影响因素。发作频率越低、学历水平越高、经济情况越好的患者，生活质量越好。发作频率对生活质量的影响最大。结论影响成人癫痫患者生活质量的因素是发作频率、学历水平和经济情况，其中发作频率的影响最大。     

Impact of a seizure disorder disease management program on patient-reported quality of life.

The objective of this study was to evaluate the impact of a comprehensive, multifaceted disease management program on self-reported quality of life (QOL) for adult patients with epilepsy. The study (1996-2000) employed a quasi-experimental research design in which primary care clinics in a southwestern integrated delivery system were assigned to either the intervention or comparison group. The impact evaluation involved a comparison of responses to a validated QOL survey before and after a disease management intervention for adult health plan members with epilepsy. The intervention consisted of both formal provider training and associated tools and reinforcements as well as direct-to-patient interventions, including a comprehensive education booklet, a seizure diary, a patient education class, and a resource list. Pre-post analysis utilizing paired t-tests was conducted to identify any pre-post differences in QOL for both the intervention and comparison group patients, as measured by the seven specific domains of the epilepsy QOL instrument (QOLIE-31). The intervention group patients showed statistically significant positive changes in two QOL domains: Seizure Worry (p < 0.001) and Emotional Well-being (p < 0.05). One other domain, Overall Quality of Life, showed improvement in the intervention group that approached statistical significance (p < 0.06). There were no statistically significant changes for the comparison group. A well-designed, comprehensive disease management program can improve patient empowerment and coordination of care between the patient and provider, which resulted in an improvement in quality of life, one of the most central patient outcomes in this difficult disease.     

Adaptation and Evaluation of the Liverpool Seizure Severity Scale and Liverpool Quality of Life Battery for American Epilepsy Patients

The Liverpool Seizure Severity Scale (LSSS) and the Liverpool Quality of Life (LQOL) battery were developed in Great Britain to assess the severity of seizure symptoms and the impact of epilepsy on patients' quality of life. The scales have been validated on British patients, but have not been validated for use with American patients. The objectives of this study were to adapt the scales to the American population and to evaluate their reliability and validity. After modifications recommended by focus groups with patients and epilepsy specialists, the scales were administered to a sample of 90 epilepsy patients who had experienced seizures within the previous 4 weeks. Comparisons of patients with generalized tonic-clonic seizures (n = 58) and partial seizures (n = 32) revealed significant differences on 12 of the 20 items on the LSSS as well as the total score. None of the six LQOL subscales (negative drug effects, positive drug effects, affect balance, sense of mastery, life fulfilment and impact of epilepsy) distinguished patients with different seizure types but five of the six subscales were significantly correlated with seizure severity. The internal consistency and test-retest reliability were adequate for both the LSSS and LQOL. Finally, five of the six LQOL scales were significantly correlated with independent measures of mental health, physical health and role functioning. This revised version was published online in June 2006 with corrections to the Cover Date.     

Adaptation and evaluation of the Liverpool Seizure Severity Scale and Liverpool Quality of Life battery for American epilepsy patients

The Liverpool Seizure Severity Scale (LSSS) and the Liverpool Quality of Life (LQOL) battery were developed in Great Britain to assess the severity of seizure symptoms and the impact of epilepsy on patients' quality of life. The scales have been validated on British patients, but have not been validated for use with American patients. The objectives of this study were to adapt the scales to the American population and to evaluate their reliability and validity. After modifications recommended by focus groups with patients and epilepsy specialists, the scales were administered to a sample of 90 epilepsy patients who had experienced seizures within the previous 4 weeks. Comparisons of patients with generalized tonic-clonic seizures (n=58) and partial seizures (n=32) revealed significant differences on 9 of the 20 items on the LSSS as well as the total score. None of the six LQOL subscales (negative drug effects, positive drug effects, affect balance, sense of mastery, life fulfilment and impact of epilepsy) distinguished patients with different seizure types but five of the six subscales were significantly correlated with seizure severity. The internal consistency and test-retest reliability were adequate for both the LSSS and LQOL. Finally, five of the six LQOL scales were significantly correlated with independent measures of mental health, physical health and role functioning.     

健康教育对成年癫痫患者治疗依从性及生活质量的影响

目的探讨健康教育对成年癫痫患者治疗依从性及生活质量的影响。方法将130例成年癫痫患者分为健康教育组（68例）和非健康教育组（62例）,均给予规范化治疗,健康教育组对患者及家属普及癫痫相关知识及个别心理咨询,随访时间为6个月,采用成年癫痫患者生活质量量表-31（QOLIE-31）中文版进行评定。结果健康教育组患者及家属癫痫相关知识知晓率（94．12％）明显高于非健康教育组（29．03％）（χ^2=58．99,P〈0．05）;研究期间不规范用约（10．29％）及调整用药人次（27．94％）明显低于非健康教育组（27．42％,45．16％）（均P〈0．05）;3个月及6个月时发作频率减少50％以上者（79．41％,85．29％）及完全控制者（36．77％,42．65％）明显高于非健康教育组（51．61％,61．29％,20．97％,25．81％）（均P〈0．05）。研究结束时,两组患者QOL总分及各分项得分均较研究前有提高（均P〈0．05）,其中健康教育组提高程度史为显著（均P〈0．05）。结论开展健康教育有助于提高癫痫患者治疗依从性,减少发作,提高生活质量。     

Quality of Life Assessment in Patients with Neurocysticercosis

Objective of this study to investigate the impact of NCC upon the quality of life (QoL) compared to other chronic neurological diseases, epilepsy and headache. The study group consisted of 114 patients subdivided into four groups: NCC with epilepsy (n = 48), NCC without epilepsy (n = 17), epilepsy without NCC (n = 25) and chronic headache (n = 24). The QoL was evaluated by direct subjective quantification (scale of 0–10) and FACT-HN IV. NCC had impact on QoL, 53.8% patients dependent and needing help. The impact on QoL did not correlate with the classification of NCC, presence of cysts or calcifications and with CSF TP or number of WBCs. The presence of depression had a significant impact on the QoL of patients with NCC. Lack of seizure control tended to produce an adverse effect on the QoL in the group of NCC and epilepsy. NCC is not a benign disease; it has greater adverse effects on QoL of patients than epilepsy and headache, although without statistical significance. The presence of depression and uncontrolled seizures may have impact on QoL. Since asymptomatic patients were not evaluated, the results of this study are not applicable to all individuals with NCC.     

Pattern of diagnostic and therapeutic care of childhood epilepsy in Alexandria, Egypt.

OBJECTIVES: To evaluate the quality of care delivered to children with epilepsy and study the predictors of seizure recurrence after initial control. DESIGN: A cross-sectional study was conducted during 4-month period (1 January to 30 April 1999). SETTING: Children's hospitals providing out-patient and in-patient services to the majority of children in Alexandria, Egypt. OUTCOME: Seizure recurrence after at least 6 months from anti-epileptic drug (AED) adjustment. RESULTS: Electroencephalogram was performed in 82.1% of cases, whereas plasma assay was performed in only 7% of cases. AEDs were initiated after the first seizure rather than the first recurrence of seizure. Carbamazepine was the most frequently prescribed drug, followed by valproate, except for generalized absence type, which was mainly managed by valproate. Suboptimal quality of care consisted mainly of poor diagnostic assessment of children with epilepsy, underuse of plasma monitoring for AED levels, unjustified use of oral AEDs during breakthrough fits, and defective health education to the caregivers of children with epilepsy that was manifested by non-compliance with AEDs in 30.1% of cases. The outcome of the current healthcare was a 71.6% recurrence of seizures after initial control. Continuous seizures before treatment, a polytherapy regimen, and non-compliance with management procedures were significant predictors for seizure recurrence. CONCLUSIONS: More specialized neurological care and health education programs for the caregivers of children with epilepsy are warranted. By exploring the details of medical practice, a foundation is provided upon which to build a quality improvement program, using the parameters in our study as an initial framework.     

A comparison of the responsiveness of EQ-5D-5L and the QOLIE-31P and mapping of QOLIE-31P to EQ-5D-5L in epilepsy

Objective

To investigate the responsiveness of and correlation between the EQ-5D-5L and the QOLIE-31P in patients with epilepsy, and develop a mapping function to predict EQ-5D-5L values based on the QOLIE-31P for use in economic evaluations.

Methods

The dataset was derived from two clinical trials, the ZMILE study in the Netherlands and the SMILE study in the UK. In both studies, patients’ quality of life using the EQ-5D-5L and QOLIE-31P was measured at baseline and 12 months follow-up. Spearman’s correlations, effect sizes (EF) and standardized response means (SRM) were calculated for both the EQ-5D-5L and QOLIE-31P domains and sub scores. Mapping functions were derived using ordinary least square (OLS) and censored least absolute deviations models.

Results

A total of 509 patients were included in this study. Low to moderately strong significant correlations were found between both instruments. The EQ-5D-5L showed high ceiling effects and small EFs and SRMs, whereas the QOLIE-31P did not show ceiling effects and also showed small to moderate EFs and SRMs. Results of the different mapping functions indicate that the highest adjusted R ² we were able to regress was 0.265 using an OLS model with squared terms, leading to a mean absolute error of 0.103.

Conclusions

Results presented in this study emphasize the shortcomings of the EQ-5D-5L in epilepsy and the importance of the development of condition-specific preference-based instruments which can be used within the QALY framework. In addition, the usefulness of the constructed mapping function in economic evaluations is questionable.

     

291例门诊就诊成年癫痫患者生存质量及其影响因素研究

目的了解291名门诊就诊成年癫痫患者的生存质量及其影响因素。方法选取2005年7月至2006年7月在北京天坛医院癫痫门诊就诊的癫痫患者，用成年癫痫患者生存质量量表-31中文版对符合调查标准的患者进行生存质量测量和评价。结果生存质量得分为（56．46±16．58）分；生存质量各项目得分分别为：发作担忧（45．01±25．25）分、生活质量自我评价（56．12±16．37）分、感情幸福（59．35±19．56）分、认知功能（58．58±22．41）分、精力和疲劳（59．12±18．98）分、药物作用（40．45±24．44）分、社会功能（53．00±26．36）分；单因素分析结果显示，不同文化程度、是否存在自我报告药物副作用以及不同服药情况患者生存质量不同（P〈0．05）；多元线性回归分析显示，文化程度、是否存在自我报告药物副作用影响患者生存质量（P〈0．05）。结论癫痫患者的生存质量低；药物副作用、服药情况以及文化程度是影响癫痫患者生存质量的主要因素。     

The OVIS study: health related quality of life measured by the EORTC QLQ-C30 and -BR23 in German female patients with breast cancer from Schleswig-Holstein

The OVIS study is a population-based study that aims at evaluating medical care in Schleswig-Holstein (Germany). In this paper, the health related quality of life (QoL, EORTC QLQ-C30 and -BR23) of 1,927 women with breast cancer is reported. The global health status/QoL score was comparable to reference data of the age-adjusted German general population, but clinical meaningful differences (≥ 10 points) were found for all functioning scales (with the exception of physical functioning) and for three of the symptom scales/items (fatigue, dyspnoe, insomnia) with OVIS patients showing more deficits. Furthermore, OVIS patients scored higher on the item financial difficulties. Logistic regression analyses revealed that coming from an urban surrounding, having a higher social status and attendance to a regular aftercare predicted a good overall QoL, while factors that were related to perceived complications in the course of the therapy raised the risk for a low QoL rating. It is of interest, that attendance to a rehabilitation and interest in self-help groups independently predicted an increased risk for a low quality of life. Overall, we assume the global QoL is rating slightly too optimistic since major deficits were reported on the specific physical and functional scales/items.     

Evaluation of the factors affecting the quality of life and total costs in epilepsy patients on monotherapy with carbamazepine and valproate

OBJECTIVES: To evaluate the effect of different demographic and clinical factors on the quality of life and cost of treatment of epilepsy patients on monotherapy with carbamazepine and valproate. PATIENTS AND METHODS: A total of 146 patients (67 male, 79 female, age range 18-80 years) with focal and generalized seizures were studied for one year. The patients were allocated into two groups depending on the drug they received: group one--46 patients on carbamazepine, and group two--100 patients on valproate. Quality of life (QOL) and total costs per patient per year were calculated. QOL was assessed using a questionnaire--Quality of Life in Epilepsy Inventory (QOLIE-31). Costs included direct medical, non-medical and indirect costs related to either epilepsy or its treatment. The assessed demographic and clinical factors were: age, gender, type of seizures, number of registered adverse events (AE) per three months, interval between seizures and seizure reduction percentage. RESULTS AND CONCLUSIONS: In both groups, age, gender and type of seizures didn't cause significant differences in the formation of QOL and costs. In the carbamazepine patients costs were influenced by the incidence of AEs, the time between seizures and seizure reduction percentage. In the valproate patients costs were mainly influenced by the time period between seizures while QOL by the incidence of AEs.     

Association between Malnutrition and Quality of Life in Elderly Patients with Rheumatoid Arthritis

Rheumatoid arthritis (RA) is a progressive articular disease. In addition to damaging the joints, it may cause multiple organ complications, and considerably impair the patient’s functioning. Elderly patients with RA report pain, fatigue, mood disorders, sleep disorders and insomnia, accompanied by weakness, poor appetite, and weight loss. All these factors combined have an adverse effect on the patient’s perceived quality of life (QoL). Due to the chronic nature of RA and the high risk of malnutrition in this patient group, the present study investigated QoL, activities of daily living, and frailty syndrome severity in relation to MNA (Mini Nutritional Assessment) questionnaire scores among elderly RA patients. The study included 98 patients (aged over 60) diagnosed with RA per the ARA (American Rheumatism Association) criteria. The following standardized instruments were used: WHOQoL-BREF for QoL, the Edmonton Frail Scale for frailty syndrome severity, MNA for nutritional status assessment, and MMSE (Mini-Mental State Examination) to assess any cognitive impairment. Medical data were obtained from hospital records. Patients with a different nutritional status differed significantly in terms of limitations in activities of daily living (ADL) and instrumental activities of daily living (IADL). Higher levels of malnutrition were associated with greater limitations in activity. An adverse impact of lower body weight on cognitive function was also observed (dementia was identified in 33.33% of malnourished patients vs. 1.79% in patients with a normal body weight). Likewise, frailty was more common in malnourished patients (mild frailty syndrome in 33.3%, moderate in 16.67%, and severe in 16.67%). Malnourished patients had significantly lower QoL scores in all WHOQoL-BREF questionnaire domains than those with a normal body weight, and multiple-factor analysis for the impact of selected variables on QoL in each domain demonstrated that frailty was a significant independent determinant of poorer QoL in all domains: perceived quality of life (β = −0.069), perceived health (β = −0.172), physical domain (β = −0.425), psychological domain (β = −0.432), social domain (β = −0.415), environmental domain (β = −0.317). Malnutrition was a significant independent determinant of QoL in the “perceived health” domain (β = −0.08). In addition, regression analysis demonstrated the positive impact of male sex on QoL scores in the psychological (β = 1.414) and environmental domains (β = 1.123). Malnourished patients have a lower QoL than those with a normal body weight. Malnutrition adversely affects daily functioning, cognitive function, and the severity of frailty syndrome. Frailty syndrome is a significant independent determinant of poorer QoL in all WHOQoL BREF domains.     

抗癫痫药物与抑郁、焦虑对癫痫患者生活质量的影响研究

目的:探讨采用不同药物治疗癫痫患者在抑郁、焦虑及生活质量方面的质量方面的差异,并做相关性研究.方法:应用抑郁障碍表(HAMD)、焦虑自评量表(SAS)及癫痈患者生活质量-31量表(QOLIE-31)对82例采用苯巴比妥药物治疗癫痫的患者及82例采用混合药物治疗.痈的患者进行评定,对照分析采用不同药物患者的心理情绪及生活质量,并做才目关性分析.结果:采用苯巴比妥与采用一般药物治疗癫痫患者在抑郁、焦虑及生活质量总评方面均无统计学差异而生活质量评价中除"情绪"项外均与HAMD、SAS评分成负相关.     

The evolution of health-related quality of life assessment in epilepsy

The purpose of this article is to review the ways in which quality of life has been assessed in patients with epilepsy. It is specifically proposed that there have been three phases or types of studies examining the effects of epilepsy on cognitive, behavioural, social and physical function. The first and oldest phase was characterized by the use of traditional forms of clinical evaluation and available generic measures of cognitive, behavioural and psychosocial function to study the general effects of epilepsy, effects of epilepsy-specific clinical variables (e.g. seizure type, age at onset), and the consequences of treatment with antiepileptic medications on patients' lives. The second phase of research was characterized by the development of epilepsyspecific measures of cognitive ability, psychological status and psychosocial status, which were designed to meet the special research and clinical needs not provided by previous generic measures (e.g. Washington Psychosocial Seizure Inventory, Fear of Seizures Scale). The third and most recent phase is characterized by the use of models, techniques, and measures developed from the health services research field to assess formally contemporary definitions of health-related quality of life (HRQOL) (e.g. ESI-55, QOLIE-89, Seizure Severity Scale) and develop models of the effects of epilepsy on HRQOL. Thus, concern regarding the impact and consequences of epilepsy is not a new development, but has evolved over the years, resulting in new models and methods of assessment of disease impact on well-being and functional status.     

Quality of life three months and one year after first treatment for early stage breast cancer: Influence of treatment and patient characteristics

This paper reports the quality of life (QoL) of a large cohort of Australian women three and twelve months after surgery for early stage breast cancer (ESBC), and shows that the impact of disease and treatment on QoL differed by age, education and marital status. Eighty-three percent of eligible patients were recruited; 86% had breast conserving surgery and 14% mastectomy. Response rates were 93% (n = 305) at three months and 88% (n = 291) at one year. Quality of life was measured with the EORTC core questionnaire (QLQ-C30) and an ESBC-specific questionnaire. Multilevel analysis was used to estimate the effects and interactions of time, treatment and patient characteristics. Most symptoms declined between three months and one year, but arm and menopausal symptoms persisted. Emotional, social and role functioning improved over time, and fear of disease recurrence diminished. Younger women faired worse than older women on a broad range of QoL dimensions. Single women and those with less education faired worse on a number of dimensions. The negative impact of mastectomy on body image was greatest among married women, particularly young married women. These sociodemographic distinctions are relevant when discussing treatment options with women facing a diagnosis of ESBC. This revised version was published online in June 2006 with corrections to the Cover Date.     

新生儿惊厥视频脑电图特点及对预后判断价值

目的 回顾性分析新生儿惊厥视频脑电图(VEEG)特点及对新生儿惊厥预后判断的价值.方法 收集2010至2015年在北京大学第一医院因新生儿惊厥住院并且行VEEG检查的新生儿为研究对象,比较新生儿期和婴幼儿期VEEG异常特征和程度、新生儿期VEEG异常程度与婴幼儿期有否惊厥和神经发育异常的关系.结果 ①收录符合条件新生儿共61例,新生儿期VEEG轻度异常29例(47.5%),以阵发性异常和复合异常为主;中度异常24例(39.3%),以阵发性异常为主;重度异常7例(11.5%),以背景活动异常为主;暴发-抑制1例(1.6%).新生儿期VEEG严重程度与以后惊厥发作无相关性(rs=0.177,P=0.168),与神经发育不良显著相关(rs=0.486,P<0.001),婴幼儿期仍有惊厥发作与神经不良预后显著相关(rs=0.799,P<0.001);②出院后随访到39例,2例死亡,癫痫19例,其中治疗后仍有惊厥发作14例,有神经发育不良16例.新生儿期VEEG与婴幼儿期VEEG严重程度显著相关(rs=0.913,P<0.001);③新生儿期VEEG背景活动异常明显者以后神经发育不良发生率最高(87.5%).随访VEEG有背景活动异常和复合异常者100%有神经发育不良;阵发性异常和成熟性异常者神经发育不良率分别为50.0%和33.3%.结论 新生儿惊厥VEEG异常程度及背景活动对判断神经发育预后有重要参考意义.     

脑卒中后癫痫发作的相关危险因素分析

目的 分析脑卒中后癫痫发作的临床特点,并对其相关因素进行分析。方法 对1 008例脑卒中患者进行回顾性研究,并分析可能影响卒中后继发癫痫发作的相关危险因素。结果 脑卒中后癫痫发作的发生率约为5.36%,其中早发型癫痫占63.11%,发作类型以单纯部分发作为主,迟发型癫痫占38.89%,发作类型以全身强直-阵挛发作为主,单因素分析结果显示:性别（χ2=4.12,P=0.042）、糖尿病（χ2=4.89,P=0.027）、肺部感染（χ2=8.95,P=0.003）、病灶部位（χ2=45.14,P<0.001）和病灶范围（χ2=23.32,P<0.001）与卒中后癫痫发作有关;多元Logistic分析结果显示:性别（OR=1.946,95%CI:1.039~3.644）、肺部感染（OR=3.618,95%CI:1.536~8.520）、病灶部位（OR=6.435,95%CI:3.353~12.349）和病灶范围（OR=2.513,95%CI:1.374~4.599）等因素可能与卒中后癫痫发作有关（均有P<0.05）。结论 男性,肺部有感染,病灶部位在皮质和病灶范围大可能是卒中后癫痫发作的危险因素。     

Development of a Self-Efficacy Scale for Children and Adolescents With Epilepsy

The purpose of this study was to develop and test the psychometric properties of a Seizure Self-Efficacy Scale for Children (SSES-C). An initial pool of test items was generated using a variety of resources, including literature reviews, child self-efficacy measures from other chronic diseases, and self-efficacy measures for adult patients with epilepsy. Experts in the field of self-efficacy, chronic illness self-management, and behavioral management of seizure disorders were asked to evaluate item content and readability. The scale was administered via computer-assisted telephone interviews to 175 children ages 9 through 14 years who had had epilepsy for 6 months or more. Content validity of the SSES-C was ensured by 80% agreement on test items by experts. The final version of the scale has 15 items. Construct validity was supported by factor analysis and correlation of the SSES-C to other constructs of influence on the health behavior of children with epilepsy. Specifically, the SSES-C was significantly correlated with attitude toward illness, worry, unmet needs for psychosocial care, child depression, and child self-concept. Internal consistency reliability for the measure was also adequate (a = .93). The primary result of this study was the development of an easily administered and useful 15-item scale to measure the degree of self-efficacy experienced by children and adolescents related to the management of their seizure disorder. The SSES-C is a promising questionnaire that has potential for use as a clinical and research tool to measure self-efficacy in children with seizures.     

Agreement between self reports and proxy reports of quality of life in epilepsy patients

Agreement between self reports and proxy reports of quality of life was examined in a sample of 292 patients with epilepsy and their designated proxies. Patients and proxies completed an 89-item Quality of Life Inventory (QOLIE-89), with the items rephrased for the proxy. Results reveal moderate correlations (product-momentr ranging from 0.29 to 0.56 for 17 multi-item scales) between self reports and proxy reports. Agreement was good for measures of function that are directly observable and relatively poor for more subjective measures. Mean scale scores were significantly different between patients and proxies for only five of 17 multi-item scales. Proxy respondents systematically reported better functioning than did patients in three scales assessing cognitive functioning (allp<0.001). By contrast, patients reported more positive health perceptions and less seizure distress than proxies. Patient educational attainment correlated inversely with degree of disagreement between patient and proxy reports for six of the 17 QOL scales and for the overall score. In addition, proxy educational attainment correlated positively with agreement for four scales. This study indicates that for group level comparisons, proxy respondents can be substituted for adults with epilepsy having low to moderate seizure frequency. However, for individual level assessments proxies should be used with caution.Data collection was funded by an unrestricted educational grant from Wallace Laboratories. Preparation of this article was supported in part by RAND from its internal research funds. We thank Jim Tebow and Jacqueline Campbell for secretarial support. The opinions expressed are those of the authors and do not necessarily reflect the views of the sponsor, RAND, UCLA, or other institutions affiliated with this project. Requests for the QOLIE-89 should be directed to: Contracts Office, RAND, 1700 Main Street, Santa Monica, CA 90407-2138, USA.     

Perception of quality of life by patients, partners and treating physicians

The objective of the study was to determine possible differences in perception of quality of life (QoL) between patients with metastatic breast or prostate cancer, their partners, and the treating physician. Patients with metastatic breast cancer (n = 71), and metastatic prostate cancer (n = 29), a partner, and the physician each completed the same QoL questionnaire indicating how they perceived the patient's QoL. The European organization for research and treatment of cancer (EORTC) QLQ-C30 questionnaire was used to assess patients with breast cancer and the modified prostate cancer specific quality of life instrument (PROSQOLI) for patients with prostate cancer. There was reasonable agreement in mean scores between patients, and physicians or partners, for many domains of QoL; however, there was substantial discordance between scores when considering individual patients. For patients with metastatic breast cancer, physicians systematically underestimated overall QoL (p = 0.0002), social functioning (p = 0.001), and role functioning (p = 0.008), while partners showed better agreement. With prostate cancer physicians tended to underestimate pain, while mean scores for spouses were more concordant. There is substantial variability between ratings of QoL by physicians or partners, as compared to patient ratings. Medical decisions should be based on information about QoL provided by patients using validated methods. This revised version was published online in July 2006 with corrections to the Cover Date.