Distinguishing between quality of life and health status in quality of life research: A meta-analysis

Despite the increasing acceptance of quality of life (QOL) as a critical endpoint in medical research, there is little consensus regarding the definition of this construct or how it differs from perceived health status. The objective of this analysis was to understand how patients make determinations of QOL and whether QOL can be differentiated from health status. We conducted a meta-analysis of the relationships among two constructs (QOL and perceived health status) and three functioning domains (mental, physical, and social functioning) in 12 chronic disease studies. Instruments used in these studies included the RAND-36, MOS SF-20, EORTC QLQ-30, MILQ and MQOL-HIV. A single, synthesized correlation matrix combining the data from all 12 studies was estimated by generalized least squares. The synthesized matrix was then used to estimate structural equation models. The meta-analysis results indicate that, from the perspective of patients, QOL and health status are distinct constructs. When rating QOL, patients give greater emphasis to mental health than to physical functioning. This pattern is reversed for appraisals of health status, for which physical functioning is more important than mental health. Social functioning did not have a major impact on either construct. We conclude that quality of life and health status are distinct constructs, and that the two terms should not be used interchangeably. Many prominent health status instruments, including utility-based questionnaires and health perception indexes, may be inappropriate for measuring QOL. Evaluations of the effectiveness of medical treatment may differ depending on whether QOL or health status is the study outcome.     

Quality of life in tuberculosis: A review of the English language literature

Introduction: Tuberculosis (TB) studies have concentrated on clinical outcomes; few studies have examined the impact of TB on patients' quality of life (QOL). Methods: A systematic review of published medical literature using specific MESH terms: [Tuberculosis] and 1 – [Outcome], 2 – [Outcome Assessment], 3 – [Quality of Life], 4 – [Mood Disorder], 5 – [Cost and Cost Analysis], 6 – [Religion], 7 – [Perception], 8 – [Social Support], 9 – [Optimism], 10 – [Stress], 11 – [Signs and Symptoms], and 12 – [Cost of Illness]. This yielded 1972 articles; 60 articles met inclusion criteria and were reviewed. Results: TB somatic symptoms have been well studied, but there were no studies of effects on physical functioning or general health perceptions. Patients tend to be worried, frustrated, or disappointed by their diagnosis, but it is unknown how emotional health changes with treatment. Diagnosed patients are less likely to find work, and less able to work and care for their families. TB creates the greatest financial burden on the poor. In developing countries, patients and their families are ostracized by society, and families sometimes ostracize patients; the extent of TB's social stigma in the developed countries is unknown. Conclusion: There has been relatively little research on TB QOL and even less in developed countries. A better understanding may help improve treatment regimens, adherence to treatment, and functioning and well-being of people with TB.     

Binge eating and weight-related quality of life in obese adolescents

Limited data exist regarding the association between binge eating and quality of life (QOL) in obese adolescent girls and boys. We, therefore, studied binge eating and QOL in 158 obese (BMI ≥ 95th percentile) adolescents (14.5 ± 1.4 years, 68.0% female, 59% African-American) prior to weight-loss treatment. Youth completed an interview to assess binge eating and a questionnaire measure of QOL. Controlling for body composition, binge eating youth (n = 35), overall, reported poorer QOL in domains of health, mobility, and self-esteem compared to those without binge eating (ps < 0.05). Also, girls, overall, reported poorer QOL than boys in activities of daily-living, mobility, self-esteem, and social/interpersonal functioning (ps < 0.05). Girls with binge eating reported the greatest impairments in activities of daily living, mobility, self-esteem, social/interpersonal functioning, and work/school QOL (ps < 0.05). Among treatment-seeking obese adolescents, binge eating appears to be a marker of QOL impairment, especially among girls. Prospective and treatment designs are needed to explore the directional relationship between binge eating and QOL and their impact on weight outcomes.     

Functioning and health in patients with cancer on home-parenteral nutrition: a qualitative study

Background  

Malnutrition is a common problem in patients with cancer. One possible strategy to prevent malnutrition and further deterioration is to administer home-parenteral nutrition (HPN). While the effect on survival is still not clear, HPN presumably improves functioning and quality of life. Thus, patients' experiences concerning functioning and quality of life need to be considered when deciding on the provision of HPN. Currently used quality of life measures hardly reflect patients' perspectives and experiences. The objective of our study was to investigate the perspectives of patients with cancer on their experience of functioning and health in relation to HPN in order to get an item pool to develop a comprehensive measure to assess the impact of HPN in this population.     

Relative importance and interrelations between psychosocial factors and individualized quality of life of hemodialysis patients

Since quality of life (QOL) of hemodialysis (HD) patients is low and frequently difficult to improve by medical therapy, it is important to identify psychosocial correlates and life-domains important for HD patients' QOL. Our hypothesis was that psychosocial factors reflecting appraisal, external and internal resources/impediments correlate with QOL and compensate for adverse effects of disease-related variables on QOL. Forty-eight chronic HD-patients identified and rank-ordered life-domains important for QOL and rated their level of satisfaction with those domains. This was performed using a slightly modified version of the Self-Evaluated Individualized QOL (SEiQOL) Scale. Psychosocial factors included perceived-control (PC), social-support and hostility. Demographic and disease-related factors included age, gender, cardiovascular disease (CVD), diabetes, hematocrit, albumin and C-reactive protein. QOL was significantly correlated with PC (r = 0.65) and social-support (r = 0.38), and inversely correlated with hostility (r = –0.31), diabetes and hypoalbuminemia (all at least p < 0.05). PC mediated effects of certain variables (e.g., albumin, gender, hostility) and moderated effects of little social-support and hypoalbuminemia on QOL. Patients' most important QOL domains were health, with which satisfaction was lowest, followed by family, with which satisfaction was highest. Pending replication with larger samples, assessment and enhancement of PC may improve HD patients' QOL.     

Deterioration of Quality of Life of High-Risk Breast Cancer Patients Treated with High-Dose Chemotherapy: The PEGASE 01 Quality of Life Study

Objective:  The aim of this study was to compare the quality of life (QOL) of high-risk breast cancer patients included in a randomized clinical trial (PEGASE 01) comparing conventional chemotherapy versus adding an additional high-dose chemotherapy (HDC) cycle with blood stem cell support.
Methods:  A total of 314 patients were included in the clinical trial. QOL evaluations were available for 199 patients. QOL was assessed over a 1-year follow-up period, using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C-30. The results were analyzed using a linear mixed-effects model.
Results:  Toxicity of HDC has a strong negative impact on patients' QOL during the treatment phase. This negative impact tended to last longer in the HDC group, as for most of the QLQ-C30 scales, the QOL scores of HDC patients tend to improve at a slower rate than that of patients receiving standard chemotherapy. In particular, physical functioning remains deteriorated 1 year after inclusion for HDC patients comparatively to conventional chemotherapy patients (85.99 vs. 76.65, P  = 0.021), and the pain score was still higher in the HDC group at that time (28.32 vs. 15.97, P  = 0.004).
Conclusion:  HDC has a negative impact on QOL even after treatment phase. In the absence of an overall survival benefit of using HDC for high-risk breast cancer patients, QOL studies with a longer follow-up play an important role in informing the complex trade-off implied by HDC between higher toxicity, reduced risk of relapse, and QOL decrease after the active phase of treatment.     

Quality of life, pain, and psychological well-being in women suffering from gynecological disorders

Most gynecological disorders are not life threatening. They may nevertheless severely affect women's lives. This study was conducted to investigate quality of life (QOL), pain, and psychological well-being in women suffering from such disorders compared with a control group. Women with benign gynecological disorders who are awaiting hysterectomy have a lower score in the health and functioning domain of QOL compared with the control group. More than three of four patients experience pain, mostly pelvic pain. Pain has a clear negative influence on women's QOL, pelvic pain to a greater degree than other types of pain. The patients report the same degree of psychological well-being as the control group. Benign gynecological disorders have a clear negative impact on women's health and functioning, and pain is a major problem for these patients. The more pain, the lower QOL. Their psychological well-being, however, does not seem to be affected.     

Quality of life and coping strategies among lung transplant candidates and their family caregivers

Although numerous studies have examined coping strategies and quality of life (QOL) among patients with chronic diseases and their family caregivers, no studies have examined the reciprocal effects of patient and caregiver coping strategies on their dyad partner's QOL. Because most people who cope with stressful health experiences do so within the context of interpersonal relationships, it is important to understand the ways in which the two partners' coping strategies may reciprocally affect each other's QOL. Adult lung transplant candidates and their caregivers (N=114 pairs) participated in semi-structured interviews that included measures of QOL and coping with patients' health-related problems. Multivariate, canonical correlation analyses were performed to examine unique patterns of associations between coping and QOL in patient-caregiver dyads. Better patient QOL, across multiple domains, was associated with better caregiver QOL. Multiple elements of patients' coping, including greater use of active coping and emotionally oriented coping were related to generally poorer patient QOL in psychosocial and physical domains. Similarly, caregivers who used more emotionally oriented coping had poorer QOL. There was no statistically reliable relationship between either (a) patient and caregiver use of coping strategies, or (b) caregiver coping and patient QOL. However, patients' coping strategies were important correlates of caregivers' QOL. These findings belie common clinical beliefs that family members' coping responses to patients' health are likely to affect patient well-being. Instead, patients' coping and QOL may be critical for understanding caregiver well-being, especially in the current era in which caregivers are assuming increased responsibility for providing patient care.     

Reliability and validity of the sexual life quality questionnaire (SLQQ)

The sexual life quality questionnaire (SLQQ) was developed to evaluate sexual quality of life (QOL) and satisfaction with treatments for erectile dysfunction among patients and their sexual partners. This paper describes the development of the instrument and reports its psychometric properties as observed in two studies involving patients under treatment for erectile dysfunction. The instrument consists of 16 items, 10 of which deal with dimensions of sexual QOL that can be summed to a sexual QOL scale measure. The remaining six items comprise a scale measuring satisfaction with treatment dimensions. The composite sexual QOL and treatment satisfaction scales met established psychometric goals overall and within select subgroups (length of time quartiles, patient/partner). A significant correlation between the treatment satisfaction scale score and the patients' responses to a question asking their likelihood of selecting the method for continued treatment (r: 0.89) showed the measure to be a good indicator of treatment preference. Finally, there were significant differences in sexual QOL scale scores between screening and first treatment, indicating the instrument was responsive and able to detect changes in sexual QOL.     

Community tuberculosis care through "TB clubs" in rural North Ethiopia

Non-compliance is a major problem in the treatment of tuberculosis (TB). This paper assesses the effectiveness of "TB clubs" in improving compliance with TB treatment and their impact in improving societal attitudes associated with TB. The study utilised both quantitative (cohort study) and qualitative (focus group discussion and an in-depth interview) methods. The cohort study was conducted in two rural districts of Northern Ethiopia. A total of 128 sputum positive pulmonary patients were enrolled and followed, 64 in the TB club and 64 in the comparison groups, to determine treatment outcome of anti-TB therapy. The impact of the TB clubs in changing societal attitudes and behaviour associated with TB was assessed using qualitative methods.The treatment completion rate was significantly better (X2=5.41, P<0.02) in the TB club group, 44 out of 64 patients (68.7%) completed treatment in TB club while only 30 of the 64 (46.8%) completed treatment in the comparison group. The defaulter rate was also significantly lower (X2=11.57, P<0.001) in the TB club group 8/64 (12.5%) compared to 26/64 (40.6%) in the comparison group. The qualitative part of the study also demonstrated remarkable changes in patients' understanding of TB, patients' initial reaction to a TB diagnosis, misconceptions as to the cause and treatment of TB, the social isolation and compliance and belief in the modern health care in the TB club area.The complementary results obtained from the quantitative and qualitative components of the study indicate that the TB club approach has a significant impact in improving patients' compliance to anti-TB treatment and in building positive attitudes and practice in the community regarding TB. This study, thus, provides convincing evidences that the TB club approach is useful in delivering TB treatment successfully in rural populations. Further large-scale studies are needed to find out whether this approach is applicable on a national scale and to other developing countries.     

Adaptive responses among Dutch elderly: the impact of eight chronic medical conditions on health-related quality of life.

OBJECTIVES: This study analyzed the impact of eight common chronic medical conditions on functional, social, and affective domains of health-related quality of life among community-based Dutch elderly (n = 5279). METHODS: Health-related quality of life was measured with six domains of the MOS Short-Form General Health Survey. The impact of the selected chronic conditions on health-related quality of life was analyzed by means of Student's t tests, analyses of variance, and multiple regression analyses. RESULTS: Compared with other domains of health-related quality of life, mental health was the least affected by chronic medical conditions. Back problems and rheumatoid arthritis/other joint complaints accounted for relatively high proportions of the variance in health-related quality of life (from 35.5% to 68.3%), except for health perceptions (22.6%), indicating that health-related quality of life is most affected by these two conditions. CONCLUSIONS: Subjective well-being is by far the domain least affected by chronic medical conditions, while physical functioning and health perceptions are most affected. Back problems and rheumatoid arthritis/other joint complaints affect health-related quality of life strongly.     

General life satisfaction and domain-specific quality of life in chronic schizophrenic patients

Subjective quality of life (QOL) has often been assessed through questionnaires or structured interviews focusing on the person's satisfaction with various life domains. In particular, most QOL instruments for psychiatric patients are based on this concept. We report on a study casting some doubts on the rationale of this approach. We investigated the QOL of 48 chronic schizophrenic outpatients with a long-term disease history (at least 20 years) using a German version of the Lancashire QOL Profile. The interrelations between general life satisfaction, satisfaction with specific life domains, psychological well-being and psychopathology were studied using correlation analysis and multiple linear regression. Of the life domains assessed, only two, namely social relations and health, contributed significantly to the patients' general life satisfaction, while the others (including work, leisure, family relations and housing) did not. The subscales on psychological well-being (self-esteem, affective state) as well as psychopathology were found to be more closely associated with general life satisfaction than almost all life domains considered. The findings are discussed with regard to the specific situation of the group of patients investigated. They give indications that the life domain approach to measuring QOL has its limitations, in particular when applied to patients having adapted to a very restricted everyday life.     

Impact of laparoscopic colorectal segment resection on quality of life in women with deep endometriosis: one year follow-up

Purpose

To evaluate the changes in quality of life (QOL) over a 1-year follow-up period in patients submitted to laparoscopic colorectal resection for the treatment of deep endometriosis.

Methods

A prospective observational cohort study (Canadian Task Force Design Classification II) involving 40 women with intestinal deep endometriosis was conducted between June 2007 and September 2008 at the Department of Obstetrics and Gynecology, Santa Casa Medical School, Sao Paulo, Brazil. Prior to the surgical procedure, all patients received magnetic resonance studies of the pelvis and rectal echoendoscopy, which suggested intestinal involvement of the disease in all cases. The patients received laparoscopic colorectal resections and treatment for other endometriotic lesions. The subjects completed the QOL SF-36 at 3 time points (T0 pre-operatively; T1 6 months post-operatively; and T2 1 year post-operatively).

Results

The physical functioning, role physical, social functioning and role emotional subscales evidenced the most substantial median increases for T0, T1 and T2. The pain, general health, vitality and mental health domains showed slight changes and increases in medians but did not increase to the same extent as the previous group. Significant improvements were observed in all domains of the SF-36 throughout the study period (p < 0.05). Physical health-related QOL domains showed greater improvement than mental health domains. Analyses of age, parity and body mass index as potential factors influencing the impact of surgery on QOL revealed no differences. Therefore, these factors were not used as prognostic indicators for the surgical procedure or for patient follow-up. In addition, we noted that the patients with poorest results on the initial QOL questionnaire showed the greatest improvements at the end point.

Conclusion

The study results showed that laparoscopic colorectal segment resection for endometriosis had a positive impact on QOL in this patient group. The positive effects persisted 1 year after surgery.     

Quality of life in coronary patients

This study compared measures of quality of life (QOL) in two groups of coronary heart disease patients: one with myocardial infarction (MI) and one with angina (A). The population studied consisted of 49 patients from Group MI and 27 patients from Group A. A questionnaire was used to identify socio-demographic and clinical data, as well as data from the SF-36 instrument, to assess the patients' QOL. It was observed in both groups that the QOI declined in the following aspects: physical functioning, pain, general health condition, vitality, social functioning, and mental health. Socio-demographic and clinical variables influenced the QOL score. Studies aiming at a larger number of individuals and a better understanding of the effects of the variables above upon the QOL of coronary patients are needed.     

Survival-weighted health profile for long-term survivors of acute myelogenous leukemia

The objective of this study was to use survival-weighted psychometric scores (SWPS) to construct a health profile for long-term survivors of acute myelogenous leukemia (AML). The study cohort included all patients who had been diagnosed and treated in our institution from 1985 to 1999 and achieved complete remission after standard chemotherapy (n = 259). One hundred and four patients were interviewed by the European Organization for the Research and Treatment of Cancer (EORTC)-QLQ-C30 questionnaire and the brief form of World Health Organization quality of life questionnaire (WHOQOL-BREF) to estimate the quality of life (QOL) function of the cohort. Forty-one patients underwent bone marrow transplantation (BMT) as consolidation or salvage therapy; 63 received chemotherapy alone. SWPS for every functioning domain and symptom item was obtained by direct integration of the mean QOL function with the survival function of the cohort. A Monte Carlo method was used to extrapolate the life-long SWPS beyond the follow-up limit. The mean scores of EORTC-QLQ-C30 and WHOQOL-BREF did not differ significantly between patients who received BMT or those who received chemotherapy only (p > 0.01). In mean SWPS, patients who received BMT had significantly (p < 0.01) better SWPS in all of the functioning domains and symptom items of EORTC-QLQ-C30 and all four domains of WHOQOL-BREF. However, when the life-long extrapolation of SWPS was made, these differences diminished in global health and several symptom items of EORTC-QLQ-C30 as well as in the social and environmental domains of WHOQOL-BREF. Patients' perspective on QOL may be domain-specific and may evolve over time. SWPS may be useful to evaluate the efficacy of different treatment strategies for AML. Confirmation of the relative merit of BMT vs. chemotherapy alone from prospective studies is needed.     

乳腺癌患者生命质量的影响因素分析

目的：探讨和分析乳腺癌患者的生命质量及其影响因素。方法：采用癌症病人生活功能指数量表（FLIC）对128例现患乳腺癌患者进行生命质量的流行病学调查,对所得125份合格资料进行生命质量的评价、单因素分析和多元线性回归分析。结果：125例患者生命质量的FLIC得分均值为62．3分,95％可信区间为59．63～65．00分,因病借钱、治疗方式、手术效果是影响乳腺癌患者生命质量的主要因素。结论：普及乳腺癌的相关知识,减轻病人经济负担,加强对医务人员业务知识的培训和指导,提高乳腺癌的诊疗水平,完善医疗保健制度,有利于提高乳腺癌患者的生命质量。     

The use of focus groups in evaluating quality of life components among elderly Chinese people

In Taiwan, to measure the quality of life (QOL) of elderly Chinese, one must rely on instruments developed in other Chinese or Western populations and not specifically for the elderly. The purpose of this study is to understand the components of QOL for elderly Chinese from Taiwan living in residential homes or in their communities. Forty-four elderly men and women divided into six focus groups were interviewed on video tape and the resultant recording was analyzed qualitatively by six independent researchers. The study yielded 15 QOL domains grouped into six dimensions: physical health (physical well-being, impact of illness, medical care), psychological health (mood states, life attitude and retrospection, philosophy of living, self-efficacy), social function (connectedness, exercise and leisure activities, social activities and services), living environment (living environment and arrangements, institutional factors), economic status, and religion and death (religion, death). For elderly Chinese in Taiwan, positive and negative life domains are equally important in the perception of life quality; person-environment interaction is a major consideration in the evaluation of QOL; family ties are an important component of QOL; traditional Chinese beliefs exert a positive influence on perceived QOL; and social functioning and vitality have a different meaning in Chinese compared to Western cultures.     

Assessment of quality of life among HIV-infected persons in Pune,India

Objective: To study dimensions of Quality of Life (QOL) amongst HIV infected persons, their relationship with socio-demographic characteristics and disease progression.Design: Cross-sectional study with one time assessment of QOL.Methods: Modified Medical Outcome Study (MOS) core instrument [The Medical Outcome Study 116 core set of Measures of functioning and well being, Appendix A, core survey instrument (internet)] was interview -administered to 100 HIV infected individuals.Results: The instrument showed significant positive inter-domain correlations and desired linear association between QOL scores and the CD4 counts. The scale had a Cronbach α value of 0.75. QOL was markedly affected in the domains of physical health, work and earnings, routine activities and appetite and food intake. Women had significantly lower QOL scores than men despite having less advanced disease. The QOL scores were significantly lower among persons with lower CD4 counts mainly in different domains of physical health.Conclusions: The modified MOS scale had the desired reliability and validity for evaluation of QOL in the HIV-infected persons in India. Low scores in the domains of physical health compared to other domains suggest a strategy to focus on medical intervention. A need for psychosocial intervention for women was perceived. Longitudinal studies must be done to assess the impact of anti-retroviral therapy being rolled out through the national programme on QOL.Source of Funding: National AIDS Research Institute, Intra-mural funds Indian Council Of Medical Research, New Delhi, India.     

河南农村地区女性艾滋病合并贫血患者生存质量评价

目的:调查了解女性艾滋病合并贫血患者生存质量现状,为采取相应措施提高患者生存质量提供支持。方法:采用整群入组法,使用中文版WHOQOL-HIV-BREF量表,对68例女性艾滋病合并贫血患者进行问卷调查,计算生存质量总分及各领域得分,并与常模进行比较。结果:受调查患者生存质量6个领域及总的生存质量及健康状况得分与常模比较结果分别为,生理领域:(12.82±1.75)分(t=10.709,P<0.05);心理领域:(12.21±1.51)分(t=9.155,P>0.05);独立性领域:(11.75±1.48)分(t=0.724,P>0.05);社会关系领域:(12.31±1.73)分(t=7.728,P<0.05);环境领域:(12.15±1.19)分(t=-0.100,P>0.05);精神支柱和个人信仰领域:(10.74±1.53)分(t=1.694,P>0.05);自我总生存质量及健康状况评价得分:(11.75±1.07)分(t=12.503,P<0.05)。单因素分析结果提示,年龄、婚姻状况、文化程度及CD4+T细胞对患者生存质量各领域得分及总分影响较小(P>0.05)。结论:艾滋病患者生存质量普遍偏低,全社会应该继续为改善此类人群的生活质量提供支持。