The ED-EQoL: The development of a new quality of life measure for patients with erectile dysfunction

PURPOSE: To identify the important issues which have an impact on the quality of life (QoL) of men suffering from erectile dysfunction (ED) and to generate a new ED-specific QoL questionnaire ready to undergo further psychometric testing. METHODS: QoL issues relating to ED were generated through in-depth qualitative interviews of 29 patients, literature review and consultation with other healthcare professionals. The issues were formulated into a questionnaire, which was piloted using 40 patients with ED and subsequently refined using well-established principles of questionnaire development. RESULTS: The qualitative interviews revealed numerous psychosocial problems associated with ED, which were operationalised into a 40-item questionnaire. Pilot testing allowed the questionnaire to be reduced to a manageable 15-item final questionnaire while maintaining face and content validity and the potential to discriminate between men with varying degrees of affected QoL. This questionnaire had a Cronbach's alpha of 0.94. CONCLUSIONS: A new ED-specific QoL measure has been developed using appropriate methodology. Qualitative techniques identified a range of psychosocial morbidity in men with ED, leading to a simple but robust instrument with face and content validity. This questionnaire, Erectile Dysfunction-Effect on quality of life (ED-EQoL), has now undergone psychometric testing for validity and reliability.     

乳腺癌保乳治疗中的相关问题

目的:探讨早期乳腺癌保乳治疗的相关问题。方法:通过对51例乳腺癌保乳治疗病例的回顾性分析,总结其综合治疗的经验体会。同时对乳腺癌保乳治疗中病人的生活质量、经济承受能力、综合治疗的顺序等问题予以综合性分析。结果:除1例患者外,所有乳腺癌保乳手术病例均实施规范化治疗,中位随访时间12.7个月,局部复发率0.02%。结论:乳腺癌保乳治疗相关问题的处理方法是可行的。     

The international development of the RGHQoL: a quality of life measure for recurrent genital herpes

This paper describes the international development and psychometric testing of the Recurrent Genital Herpes Quality of Life Questionnaire (RGHQoL), a condition-specific quality of life (QoL) instrument. The theoretical foundation for the measure is the needs-based model of QoL and the content of the instrument was derived from in-depth qualitative interviews with relevant patients in the UK. Versions of the RGHQoL were required for the UK, USA, Italy, Germany, France and Denmark for use in international clinical trials. The results indicate that the final 20 item measure has good reliability, internal consistency and validity for all language versions. A small responsiveness study in Denmark suggested that the measure is sensitive to changes in QoL associated with the initiation of suppression treatment for recurrent genital herpes (RGH). It is concluded that the RGHQoL is a valuable instrument for inclusion in clinical trials. The psychometric properties of the instrument are such that it may also be used to monitor the progress of individual patients.     

The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease

Objective Mortality after surgery for congenital heart disease (CHD) has decreased. Quality of life (QOL) assessment in survivors has become increasingly important. The purpose of this project was to create the Pediatric Cardiac Quality of Life Inventory (PCQLI). Methods Items were generated through nominal groups of patients, parents, and providers. The pilot PCQLI was completed by children (age 8–12), adolescents (age 13–18), and their parents at three cardiology clinics. Item reduction was performed through analysis of items, principal components, internal consistency (IC), and patterns of correlation. Results A total of 655 patient–parent pairs completed the pilot PCQLI. Principal components identified included: impact of disease (ID); psychosocial impact (PI); and emotional environment (EE). After item reduction ID and PI had excellent IC (ID = 0.88–0.91; PI = 0.78–0.85) and correlated highly with each other (0.81–0.90) and with the total score (TS) (ID = 0.95–0.96; PI = 0.87–0.93). EE was not correlated with ID, PI, or TS and was removed from the final forms. Two-ventricle CHD patients had a higher TS than single-ventricle CHD patients across all forms (P < 0.001). Conclusion The PCQLI has patient and parent-proxy forms, has wide age range, and discriminates between CHD subgroups. The ID and PI subscales of the PCQLI have excellent IC and correlate well with each other and the TS. Supported by the Critical Care Medicine Endowed Chair at The Children’s Hospital of Philadelphia. Abstract presented at the 54th Scientific Session of the American College of Cardiology, Orlando, Florida, 2005.     

Factors influencing quality of life in breast cancer survivors

Longitudinal data from 195 breast cancer survivors were used to identify factors affecting the level and rate of change in quality of life after completion of treatment. Women were interviewed up to four times at approximately yearly intervals using Kaplan and Bush's Quality of Well Being instrument (QWB). Random coefficient regression analysis was used to model QWB as a function of time since diagnosis and personal characteristics. QWB scores decreased over time and the rate of decline increased with age (p = 0.032). This was similar to declines in women with benign breast biopsies, but overall QWB levels were lower in women with breast cancer. Having a spouse tended to slow the rate of decline in breast cancer survivors (p = 0.004). The presence of comorbidity was associated with significantly lower QWB levels (p = 0.037) but did not affect the rate of change over time. Education, family history of breast cancer, cancer stage and treatment modalities were not significantly related to QWB levels or rates of change. Breast cancer survivors experience a reduction in quality of life that persists for years after treatment and is similar in magnitude to that associated with other health problems.     

The development of a new measure of quality of life in the management of gastro-oesophageal reflux disease: the Reflux questionnaire

Introduction This paper reports on the development of a new measure of health-related quality of life for use among patients with gastro-oesophageal reflux disease (GORD), funded as part of the REFLUX trial. This is a large UK multi centre trial that aims to compare the clinical and cost effectiveness of minimal access surgery with best medical treatment for patients with GORD within the NHS. Method Potential items were identified via a series of interviews and focus groups carried out with patients who were receiving/had received medical or surgical treatment for GORD. The final measure consisted of 31 items covering 7 categories (Heartburn; Acid reflux; Wind; Eating and swallowing; Bowel movements; Sleep; Work, physical and social activities). The measure produced two outputs: a quality of life score (RQLS) and five Reflux symptom scores. Reliability (internal consistency), criterion validity with the SF-36 and, sensitivity to change in terms of relationship with reported change in prescribed medication were assessed amongst a sample of 794 patients recruited into the trial. Results The measure was shown to be internally consistent, to show criterion validity with the SF-36 and sensitive to changes in patients use of prescribed medication at baseline and 3 month follow-up. Discussion The Reflux questionnaire is a new self-administered questionnaire for use amongst patients with GORD. Initial findings suggest that the new measure is valid, reliable, acceptable to respondents and simple to administer in both a clinical and research context.     

乳腺癌患者生存质量的影响因素

乳腺癌是女性常见的恶性肿瘤,直接损害了患者的第二性征,影响了患者的生存质量。影响乳腺癌患者生存质量的因素很多,本文主要从一般人口学特征(年龄、婚姻状况、文化程度、经济状况)心理因素、社会因素、病理分期、治疗方式等几个方面对乳腺癌患者生存质量影响因素进行综述。     

Population-based study of the relationship of treatment and sociodemographics on quality of life for early stage breast cancer

Objective: To examine the relationship between cancer stage, surgical treatment and chemotherapy on quality of life (QOL) after breast cancer and determine if sociodemographic characteristics modify the observed relationships. Methods: A population-based sample of women with Stages 0–II breast cancer in the United States (N=1357) completed surveys including the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), and the Breast Cancer-Specific Quality of Life Questionnaire (QLQ BR-23). Regression models calculated mean QOL scores across primary surgical treatment and chemotherapy. Clinically significant differences in QOL were defined as 10 point difference (out of 100) between groups. Results: Meaningful differences in QOL by surgical treatment were limited to body image with women receiving mastectomy with reconstruction reporting lower scores than women receiving breast conserving surgery (p < 0.001). Chemotherapy lowered QOL scores overall across four QOL dimensions (p values < 0.001), with a disproportionately greater impact on those with lower levels of education. Younger women reported lower QOL scores for seven of nine QOL dimensions (p values < 0.001). Conclusions: Women should be reassured that few QOL differences exist based on surgical treatment, however, clinicians should recognize that the impact of treatment on QOL does vary by a woman’s age and educational level.     

Impact of fatigue on quality of life among breast cancer patients receiving chemotherapy

ObjectivesFatigue is the most frequently reported symptom experienced by cancer patients and has a profound effect on their quality of life (QOL). The study aimed to determine the impact of fatigue on QOL among breast cancer patients receiving chemotherapy and to identify the risk factors associated with severe fatigue incidence.MethodsThis was an observational prospective study carried out at multiple centers. In total, 172 breast cancer patients were included. The Functional Assessment of Chronic Illness Therapy-Fatigue Questionnaire was used to measure QOL, while the Brief Fatigue Inventory (BFI) was used to assess the severity of fatigue.ResultsThe total average mean and standard deviation of QOL were 84.58±18.07 and 4.65±1.14 for BFI scores, respectively. A significant association between fatigue and QOL was found in linear and multiple regression analyses. The relationships between fatigue severity and cancer stage, chemotherapy dose delay, dose reduction, chemotherapy regimen, and ethnicity were determined using binary logistic regression analysis.ConclusionThe findings of this study are believed to be useful for helping oncologists effectively evaluate, monitor, and treat fatigue related to QOL changes.     

Measuring quality of life in children referred for psychiatric problems: Psychometric properties of the PedsQLTM 4.0 generic core scales

OBJECTIVE: The aim of this study was to assess the psychometric properties of the Dutch translation of the Pediatric Quality of Life Inventory (PedsQL 4.0) generic core scales and assess its usefulness in measuring quality of life (QoL) in a child psychiatric population. METHODS: Reliability and validity of the PedsQL were assessed in 310 referred children (ages 6-18 years) and a comparison group consisting of 74 non-referred children (ages 7-18 years), and the parents in both groups. RESULTS: Confirmatory factor analysis resulted in a four-factor solution. Internal consistency reliability for the PedsQL Total Scale Score (alpha = 0.84 child self-report, alpha = 0.87 parent proxy-report), Psychosocial Health Score (alpha = 0.70 child self-report, alpha = 0.81 parent proxy-report), and most subscale scores were acceptable for group comparisons. Correlations between scores of fathers and mothers were large. Criterion-related validity was demonstrated by significantly lower PedsQL scores for referred vs. non-referred children. Significant correlations between PedsQL scales and measures of psychopathology showed convergent validity. Small correlations between PedsQL scales and intelligence of the child evidenced discriminant validity. CONCLUSION: The PedsQL seems a valid instrument in measuring QoL in children referred for psychiatric problems.     

Quality of life and quality adjusted survival for breast cancer patients receiving adjuvant therapy

Purpose: The objective was to compare health related quality of life (QOL) in hormone receptor negative, node-positive breast cancer patients receiving adjuvant chemotherapy to determine whether a more intensive chemotherapy regimen has an adverse effect upon QOL that is not balanced by improvements in disease control or survival. Increased physical symptoms, including fatigue and the inconvenience of the dose intensive 16-week regimen, were expected to have a negative impact on QOL. Design: QOL was measured in 163 patients, randomized to either a standard cyclophosphamide, doxorubicin and 5-flurouracil (CAF) or a 16-week multidrug regimen, using the Breast Chemotherapy Questionnaire (BCQ). The 30 item BCQ was self-administered prior to therapy, during therapy, and 4 months post treatment. Results: BCQ scores decreased (worsened) more during therapy on the 16-week regimen, median change –1.4, than on CAF, median change –0.8 (p < 0.001). By 4 months post treatment, BCQ scores were higher than pre-treatment and equal in the two arms (CAF: 8.1 and 16 weeks: 8.2, p = 0.6). Over a period of 48 months, patients on the 16-week regimen averaged 1.4 fewer months of treatment with toxicity, 4.0 more months without symptoms and 0.7 fewer months post recurrence compared to patients on the CAF regimen. Given typical values for these health states, the gain in Q-TWiST observed for the CAF regimen during treatment shifted to the 16-week regimen after 1 year, with a gain of 2.0 to 2.4 months after 4 years. Conclusions: The hypothesized negative impact of the dose intensive 16-week regimen was confirmed by the BCQ assessments. However, Q-TWiST analysis suggests a small gain for the 16-week regimen. The later results should be interpreted with caution with the limited follow-up of 4 years.     

Twelve years–experience with the Patient Generated Index (PGI) of quality of life: a graded structured review

The Patient Generated Index (PGI) is an individualised quality of life (QoL) measure that has been in use since 1994. Various adaptations have been made to suit a variety of client groups. The PGI’s psychometric properties have been studied but their review is necessary to inform instrument choice. This article provides a structured review, using grading criteria adapted from those developed to aid outcome measure selection for use with older people. These criteria grade quality of evidence and strength of findings for psychometric validity, providing a useful model for future reviews. All published articles providing data addressing validity, reliability and/or responsiveness were included in the review. Eighteen relevant articles were identified and analysed using the grading criteria. Variable results and quality of investigation were seen. Generally the measure was found to be adequately reliable for group comparisons. The PGI appeared valid but evidence for responsiveness was unclear. Those versions of the measure using fewer points in their Likert scales may have higher reliability. Cognitions involved in QoL judgements remain little understood and investigations of psychometric properties may be enhanced by examination of appraisal processes. Electronic Supplementary Material The online version of this article (doi> contains supplementary material, which is available to authorized users.     

优质护理在乳腺癌手术患者中的应用效果

目的：探讨优质护理在乳腺癌手术患者中应用的效果。方法：将56例乳腺癌手术患者随机分为对照组和观察组,各28例,分别给予常规护理和优质护理。比较两组患者术后生活质量及患侧上肢功能康复情况。结果：观察组患者生活质量总分、躯体活动、心理活动、社会活动方面改善程度、患侧上肢功能恢复程度均明显优于对照组。结论：优质护理能有效提高护理质量,明显改善乳腺癌手术患者的生活质量。     

河北省老年人生存质量现状及影响因素

目的 了解影响河北省老年人生活质量的因素,为采取相应的干预措施提供依据.方法 采用世界卫生组织编制的《世界卫生组织生存质量测定表简表》(WHOQOL-BREF)和自编一般情况问卷对唐山、张家口820名老年人(≥60岁)进行问卷调查.结果 河北省老年人生存质量的生理领域、心理领域、社会领域、环境领域得分分别为(59.05±16.89)、(59.27±14.94)、(63.57±15.04)、(56.61±14.70)分,除社会领域外其他均显著低于常模水平(P＜0.01).城乡、年龄、文化程度、婚姻状况、收入、家庭居住方式、家庭功能和慢性疾病与河北省老年人生活质量有密切关系.结论 河北省老年人的生活质量整体较差,我们应更多地关注无配偶、独居、低收入、受教育程度低、患有慢性疾病的老年人.     

乳腺癌化疗患者生活质量调查及影响因素分析

目的了解和分析乳腺癌化疗患者的生活质量。方法采用自填问卷和中国癌症患者化学生物治疗生活质量量表（QLQ-CCC）对98例接受化疗的乳腺癌患者进行调查,了解他们的生活质量及影响因素。结果化疗后乳腺癌患者生活质量总分提高,与化疗前比较差异有统计学意义（P〈0．01）。化疗后乳腺癌患者在生理方面、精神及心理方面、社会方面和其他方面评分都有所改善,差异有统计学意义（P〈0．01或〈0．05）。年龄、临床分期对化疗中和化疗后患者的生活质量影响显著（p〈0．01）;文化程度对化疗后患者的生活质量有显著影响（P〈0．01）。结论乳腺癌患者化疗过程中生活质量下降,化疗后临床分期早的患者生活质量优于临床分期晚的患者。     

乳腺癌患者WHOQOL-100调查分析

目的:研究乳腺癌患者生存质量的特点。方法:抽取哈尔滨市乳腺癌病人119例,其中普通住院乳腺癌患者52例,癌症康复协会乳腺癌患者67例,采用世界卫生组织生存质量评定量表(WHOQOL-100)进行调查评估。结果:与常模相比,乳腺癌病人除环境1个领域,自尊、日常活动能力、社会安全保障、获取新信息、环境条件等5个方面无统计学意义(P>0 .05)外,其余5个领域、19个方面及总的生存质量都很低下;普通住院乳腺癌患者与癌症康复协会乳腺癌患者生存质量比较的结果表明,普通住院乳腺癌患者与癌症康复协会乳腺癌患者的总的生存质量与健康状况及生理领域、心理领域、独立性领域、环境领域有统计学意义(P<0. 05,P<0.001),社会关系领域和精神支柱领域无统计学意义(P>0. 05)。结论:乳腺癌病人的生存质量普遍低于正常人;普通住院乳腺癌患者的生存质量除社会关系领域和精神支柱领域外明显低于癌症康复协会乳腺癌患者的生存质量;不同年龄、职业、不同婚烟状况及经济状况的乳腺癌患者在某些方面生存质量存在不同。     

乳腺癌根治术对女性生活质量的影响及护理干预

本文通过回顾近年来乳腺癌根治术对女性生活质量的长期影响的文献,从疾病治疗因素、心理因素和社会支持因素方面,综合阐述了乳腺癌根治术对女性生活质量的影响,同时提出若干提高生活质量的护理干预措施,如提高心理健康水平,改善躯体功能以及充分发挥社会支持作用。     

小肠移植的疗效和生活质量

小肠移植经20余年发展已成为治疗不可逆肠衰竭的理想方法。一旦病人不能摆脱全肠外营养(TPN)维持生存,应尽早施行小肠移植。2009年,国际小肠移植登记中心(ITR)资料提示,小肠移植的短期疗效已显著改善,远期疗效也在不断提高,治疗价效比(cost-effective)、生活质量均优于TPN。现对小肠移植的疗效和病人生活质量、效价比等方面进行综述。     

The Caregiver Quality of Life Cystic Fibrosis (CQOLCF) Scale: Modification and validation of an instrument to measure quality of life in cystic fibrosis family caregivers

Objective: Modify the Caregiver Quality of Life Index – Cancer (CQOLC) scale (Weitzner, Jacobsen et al. Qual Life Res 2000; 8: 55–63) as the Caregiver Quality of Life Cystic Fibrosis (CQOLCF) scale, validate it with cystic fibrosis (CF) family caregivers, and assess caregiver quality of life QOL with patient disease severity. Methods: Following modifications, 100 family caregivers were administered the CQOLCF. Construct validity was assessed by the Medical Outcomes Study Short Form (SF-36) and the Beck Depression Inventory (BDI). Pulmonary function scores and hospitalizations assessed relationship between caregiver QOL and patient disease severity. Results: Split-half reliability was 0.862 and internal consistency (Cronbach's ) was 0.909. As expected, there were relatively high correlations with the mental health (0.634) and emotional distress (–0.687); and low correlations with physical health (0.049). ANCOVA examined differences in the CQOLCF totals based on disease severity, controlling for age. Significant mean differences existed (days hospitalized F = 3.010, sig. = 0.022). Discussion: The CQOLCF appears to be a valid, reliable, and internally consistent disease-specific scale with CF family caregivers. Future research recommendations include administering the CQOLCF to an increased study sample to explore item factor analysis.