Impact of infusion frequency on quality of life in patients receiving home parenteral nutrition

Home parenteral nutrition (HPN) may be needed as a long-term therapy for patients with chronic intestinal failure whose clinical condition does not allow complete weaning of the parenteral nutrition (PN) solution. HPN is a time-consuming and clinically complex therapy and can negatively affect quality of life (QOL). The level of dependency on HPN, specifically, infusion frequency, has been proposed as a factor that may have an effect on QOL in patients receiving HPN. The primary aim of this qualitative review is to identify the impact of HPN frequency (days per week of HPN infusion) on QOL measurements in adult patients receiving HPN. A comprehensive literature search was completed in PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases. Primary clinical research studies were included if they were conducted in adult patients receiving HPN and included the assessment of the associations between the frequency of HPN infusion and QOL measurements. Six articles ultimately met the criteria for this review. There was variability among the studies, including use of different tools to measure QOL. However, all six studies suggest that a reduction in HPN frequency may be associated with an improvement in QOL. Whenever patients’ clinical situation allows, a reduction in HPN frequency should be considered to improve QOL in patients receiving HPN.     

Validation of the FACT-BRM with interferon-α treated melanoma patients

The somatic, neurocognitive, and psychiatric side effects of biological response modifiers (BRMs) have been documented in specific patient samples. Although these side effects likely have a predictable impact on patients quality of life (QOL), no instrument currently measures the cumulative effect of the various complaints patients’ report. The current study investigated the reliability and validity of the Functional Assessment of Cancer Treatment-Biological Response Modifier (FACT-BRM) scale for measuring QOL in a sample of melanoma patients receiving interferon. Measures of distress, depression, and fatigue were also obtained using standardized, well-validated instruments. Results indicate increased symptom burden, depression, and fatigue, and decreased quality of life over 4months of IFN therapy. The FACT-BRM demonstrated good psychometrics and sensitivity to change, and thus appears to be a good instrument for measuring QOL in patients receiving BRMs.     

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.     

Assessing the needs and quality of life of patients with HIV infection: development of theHIVOverview ofProblems-EvaluationSystem (HOPES)

Objective: To develop and evaluate the psychometric properties (reliability, validity etc.) of a comprehensive Quality of Life (QOL) tool, for patients infected with the human immunodeficiency virus (HIV), that was adapted from a previously validated cancer tool. Design: Cross-sectional, patient completed written surveys and interviews. Setting: The Medical Centers serving HIV infected patients in the Los Angeles community including UCLA, community physicians, Veterans Affairs Medical Centers, and a County hospital: and additional data contributed from Johns Hopkins University Medical Center CMV Retinitis Clinic. Patients: Patients (n=318) with HIV infection including asymptomatic (37%), ARC (20%), AIDS (25%) and AIDS with Cancer (18%) receiving health services at one of the above sites. Measurements: The patients self-administered the newly developed instrument, the HOPES (HIVOverview ofProblems-EvaluationSystem), other QOL related tools including the Medical Outcomes Study instrument adapted for HIV (MOS-HIV) the Profile of Mood States (POMS), the Perceived Adjustment to Chronic Illness Scale (PACIS), and the Physical Activity Scale (PAS). Brief interview to assess the Karnofsky Performance Status Score (KPS). Measured sociodemographic characteristics included age, sex, race, HIV risk factor, education etc. Assessed medical history, current medications, HIV clinical classification. Main results: The sociodemographic and medical characteristics of the sample resemble those of the general population with HIV infection in this geographic area: 96% male, 28% nonwhite, 84% homosexual contact as risk factor, 75% receiving antiretroviral therapy. The adaptation of the cancer QOL instrument to HIV appears to have face and content validity according to patients and health professionals who care for HIV infected patients. Analyses of the psychometric properties found that the HOPES has a similar structure to its parent instrument following factor analyses which results in five summary scales representing the Physical, Psychosocial, Medical Interaction, Sexual and Significant Other/Partners domains in addition to a Global Score. Internal consistency of 35 subscales is high with a mean alpha coefficient of 0.82. Correlations of the HOPES summary scales with other QOL instruments are in the predicted directions. Comparing patients within the HIV clinical diagnostic categories on the HOPES Global, Physical, and Psychosocial Summary Scales indicates that Asymptomatic Patients have better QOL than symptomatic patients. This finding is also found in the other QOL instruments which provides evidence of construct validity. Conclusions: The HOPES is an excellent tool for identifying the problems and needs of patients with HIV infection and for assessing their quality of life. It is reliable, valid and acceptable to patients. The tool may be especially useful in developing a normative data base.This paper is dedicated to the memory of Jimmy Stophel who died of AIDS and whose sense of humour improved the quality of many people's lives.This research was supported in part by the UCLA AIDS Clinical Research Center and CARES Consultants. To obtain information about the HOPES, please contact C. A. Coscarelli Schag, CARES Consultants, 2210 Wilshire Blvd., Suite 359, Santa Monica, CA 90403, USA.     

Recurrent genital herpes and quality of life in France

Recurrent genital herpes is an incurable disease that may give rise to considerable psychological disturbance. This paper describes the impact of the disease on quality of life in a French population. The population study was also used to provide additional validation data for the French version of the RGHQoL (the Recurrent Genital Herpes Quality of Life) measure. The content of the RGHQoL was derived from patient interviews in the UK. The measure was then developed and tested simultaneously in several countries, including France. Statements in the measure were translated into French by a bilingual panel and then by a lay panel. Field-testing in France took place with 15 patients who judged the instrument to be relevant and easy to complete. The final version of the questionnaire was assessed for reliability and construct validity. The measure was found to have good test–retest reliability (0.94) and internal consistency (0.93) as assessed by Cronbach's alpha. The French RGHQoL was then used with 150 herpes patients obtained from a general population sample. A majority of the respondents completed all questions, indicating a high level of acceptability. Quality of life was found to be lowest in the under 25-year-olds and in those respondents who were most psychologically and sexually disturbed by their outbreaks and found it difficult to discuss the problem with their partner. It is concluded that the French version of the RGHQoL is an acceptable, reliable and valid instrument and that the measure provides valuable information about the impact of the disease.     

人格特征与乳腺癌患者生存质量的相关性研究

目的　探讨哈尔滨市乳腺癌患者生存质量与人格特征的相关性。方法　普通住院乳腺癌患者 5 2例 ,癌症康复协会乳腺癌患者 6 7例 ,共 119例 ,均使用世界卫生组织生存质量调查问卷 (WHOQOL 10 0 )、艾森克人格问卷(EPQ)、Zung’s抑郁自评问卷和Zung’s焦虑自评问卷进行调查。 结果　EPQ测量中的N因子与总的生存质量和生存质量的心理领域呈负相关 (P <0 0 5 )。乳腺癌患者的生存质量低于常模 ,焦虑、抑郁高于常模。结论　乳腺癌患者人格中情绪不稳定性高 ,降低生存质量 ,因此 ,必须把心理治疗和躯体治疗相结合来提高整体的疗效。     

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.     

Development of an instrument for measuring activities of daily living in persons with suspected cognitive impairment

Background According to the Swedish National Board of Health and Welfare, structured assessment of function and activity has high priority when evaluating suspected cognitive impairment or dementia. Aim/objectives The aim was to develop and psychometrically test an instrument to measure the ability to perform activities of daily living tasks in patients with suspected cognitive impairment. Material and methods The Cognitive Impairment in Daily Life (CID) instrument (for self-reported and informant-based assessments) has been developed in several phases. Content validity was achieved through five expert panels using a Content Validity Index (CVI). The content was tested further in a pilot study of 49 patients and 49 relatives from primary care or a specialist memory clinic. Results Content validity was good with a CVI index of 0.83. All patients considered that the included activities were relevant to them and reflected the difficulties they were experiencing. Most relatives considered the activities included in the instrument as adequate and captured the patients’ difficulties in daily life. Some adjustments of the tasks and scale were suggested and these were implicated after each phase. In general, relatives reported that patients had more difficulties performing the activities than the patients reported themselves. Conclusion The CID instrument seems promising in terms of content validity. Further testing of reliability and construct validity is ongoing.     

An instrument to assess mental patients’ capacity to appraise and report subjective quality of life

Quality of life (QOL) is increasingly recognized as an important outcome measure in treatment studies and service evaluation. However, patients or service users may sometimes lack the capacity to either evaluate or express their subjective QOL, for example due to cognitive impairment, communication disorders, symptom distress or burden of completing the assessment itself. This paper describes the development of an instrument, the capacity to report subjective quality of life inventory (CapQOL), which evaluates the ability of patients to appraise their subjective QOL and to complete related measures. The CapQOL is a simple and brief screening tool, designed for use in people with a wide range of mental disabilities. It helps researchers to identify individuals who are unable to appraise or report their subjective quality of life. We administered the CapQOL to 442 patients with early psychosis. About 89% of the participants were assessed to be able to complete a subjective QOL measure. The CapQOL demonstrated satisfactory psychometric properties. Further validation studies in people with psychosis as well as other mental disabilities are indicated.     

Cultural adaptation and application of the IBS–QOL in China: a disease-specific quality-of-life questionnaire

Background Irritable bowel syndrome (IBS) is a chronic and episodic illness characterized by altered bowel habits and associated abdominal pain. At present, IBS is one of the most common functional gastrointestinal and motility disorders affecting countries around the world. Surveys have found that patients with IBS have a significantly lower health-related quality of life. Objectives The aim of this study was to translate and examine the validity of the Irritable Bowel Syndrome–Quality of Life questionnaire (IBS–QOL) in patients suffering from IBS in China. Methods A structured procedure was used for the translation and cultural adaptation of the original English IBS–QOL into Chinese. The questionnaire was administered to 73 clinical patients with IBS and␣70 healthy individuals. Psychometric testing for reliability, validity and responsiveness followed standardized procedures. Test–retest reliability (10–20 hours) was assessed using the clinical patients. Follow-up (4 weeks) was collected for 61 clinical patients. All enrolled patients also completed the Short Form-36 Health Survey (SF-36) at the baseline visit. Responsiveness to treatment (Venlafaxine and traditional Chinese herbal medicine) was assessed by one-way ANOVA methods. Results The average length of time required to complete the questionnaire was short (5.63 min for IBS patients and 5.54 min for healthy subjects by self-administration). Internal consistency (Cronbach’s alpha) values ranged from 0.722 to 0.914 for the Chinese IBS–QOL subscales and test–retest reliability coefficients were higher than 0.920 on all subscales. The convergent and discriminate validity results comparing the Chinese translation of the IBS–QOL overall score and the SF-36 subscales confirmed our predicted hypotheses. The Chinese IBS–QOL scores are more highly correlated with social functioning, vitality and general health (SF-36) and show weaker associations with physical functioning, role physical, mental health, and bodily pain (SF-36). The Chinese translation of the IBS–QOL was responsive to treatment. Conclusion In general, the Chinese translation of the IBS–QOL, after cultural adaptation and revision, possesses good reliability, validity and responsiveness. It is a reliable and valid instrument to assess the quality of life in Chinese patients suffering from IBS and is an appropriate measure to use in further clinical trials or for related research projects in China.