Health-related quality of life and the transformation of symptoms

This paper traces the development of health-related Quality of Life instruments over the last half century. It identifies the emergence of key components of quality of life measurement in other health status questionnaires between about 1950 and 1980 and their formalization in Quality of Life instruments in the mid 1980s. The common developmental thread that linked these Quality of Life instruments and their precursors was the identification of 'distal symptoms' that represented the impact of illness beyond its immediate bodily manifestations. The measurement of distal symptoms through Quality of Life instruments also served to detach symptoms from their customary patho-physiological referent. Other contemporary examples of these free-floating symptoms reinforce the argument that the nature and meaning of symptoms has been transformed over recent decades.     

Health-related quality of life in Australian children with asthma: lessons for the cross-cultural use of quality of life instruments

The development of Australian forms of the Childhood Asthma Questionnaires (CAQs) is reported. Focus group methods and psychometric analyses were used to establish the conceptual, semantic and technical equivalence of these forms with the UK versions. Both versions also provide for data collection from non-asthmatic youngsters. The internal consistency was found to be acceptable (Cronbach's 0.52–0.90) and the health-related quality of life (HRQoL) scores were found to vary with asthma severity (p<0.05). Comparison with the UK data revealed that the non-asthmatic scores were higher for Australian than British children (p<0.001) but that the scores for children with asthma did not differ between the two countries. It was only in the Australian sample that the group with asthma reported impaired HRQoL when compared to their healthy peers. These findings were interpreted in the context of cultural expectations of life quality and conclusions are presented regarding the importance of the gap between experience and expectations. The difficulties raised by the developmental and cultural issues inherent in paediatric HRQoL research were discussed.     

Symbiotic relationships of quality of life,health services research and other health research

Clinical biomedical research, the traditional research orientation of quality of life (QOL) researchers, is chiefly concerned with disease processes and assessing the impact of therapeutic interventions on improving health status and QOL outcomes. This paper suggests, however, that the biomedical paradigm limits utility of QOL research findings in terms of its ability to shape health policy and improve health-related QOL in populations at risk. This paper proposes that health services research (HSR) and other health research paradigms can be used to assess QOL from multiple perspectives. HSR and QOL research can be mutually beneficial. The models for understanding health services utilized in HSR may assist in defining major determinants of QOL and the interaction of QOL with its environment. Conversely, QOL measures may be used to establish the relevance of HSR to people's well-being. The paper first defines the domain of HSR and the domain of quality of life. In order to understand their relationship, we consider what a model or paradigm for each might be, and how they would overlap. Finally, a merging of conceptual frameworks is proposed, linking QOL research to HSR and other health research. Ultimately, expanding the QOL paradigm beyond the biomedical model will promote two objectives. First, it will permit research findings to contribute more fully to shaping national health policy by considering the broader community and the delivery system factors which influence QOL. Second, researchers will be more aware of a broader range of factors affecting patients and will incorporate this in their research.     

Research on health-related quality of life: dissemination into practical applications

Stategles and processes for the effective dissemination and diffusion of research findings on healthrelated quallty of life (HQL) into practical applications were explored at a workshop held in Montreal in April, 1994. A conceptual model for dissemination and diffusion of evidence about HQL was used to identify five different target groups: HQL assessors, policy makers, planners of clinical trials, developers of clinical practice guidelines, and those at the level of patient-practitioner clinical decision making. A framework designed to facilitate the translation of fundamental research knowledge into effective action was then used as a starting point for discussions about priorities for research on HQL. The most important problem identified at the workshop was how best to strike an appropriate balance between priorities deemed to be important to those directly involved in HQL research, and priorities deemed to be important to potential users of the results of HQL research?     

Hunting for health,well-being,and quality of life

Health, well-being, quality of life, and lifestyle are central concepts within health science, although generally accepted definitions are still lacking. Lifestyle can either be seen as an independent variable and the cause of unhealthy behaviour or as a dependent variable, which is affected by conditions in the society. In the first case, the attention is directed on each individual case: maintaining or improving health requires changes in lifestyle and living habits. In this perspective, diet and physical activity are important features for health promotion. In the second case the attention is rather directed on structural conditions in society, for example the food industry, the lunches for children at school, and the “fast food” industry should be influenced to protect human health. The structural perspective has, so far, received restricted impact when it concerns prevention and promotion of health. Processes of individualisation in the society have to an increasing extent viewed health as an affair for the individual. The benefits of physical activity, healthy food and beverage, social support, and joy are documented scientifically. In general, the trend towards increasing responsibility for one''s lifestyle and health is positive, but might reinforce the inequality in health. With an even harder climate in society there might be a risk that individual health projects undermine the solidarity and the will to accept costs for medical treatment and care for people who risk their health through an unhealthy and risk-taking lifestyle. However, we argue that peoples’ well-being and quality of life presupposes a society that stands up for all people.     

Causal indicators in quality of life research

Quality of Life (QOL) questionnaires contain two different types of items. Some items, such as assessments of symptoms of disease, may be called causal indicators because the occurrence of these symptoms can cause a change in QOL. A severe state of even a single symptom may suffice to cause impairment of QOL, although a poor QOL need not necessarily imply that a patient suffers from all the symptoms. Other items, for example anxiety and depression, can be regarded as effect indicators which reflect the level of QOL. These indicators usually have a more uniform relationship with QOL, and therefore a patient with poor QOL is likely to have low scores on all effect indicators. In extreme cases it may seem intuitively obvious which items are causal and which are effect indicators, but often it is less clear. We propose a model which includes these two types of indicators and show that they behave in markedly different ways. Formal quantitative methods are developed for distinguishing them. We also discuss the impact of this distinction upon instrument validation and the design and analysis of summary subscales.     

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.     

Measurement of the quality of life in cancer survivors

A QOL instrument was developed to measure the specific concerns of long term cancer survivors. The QOL-CS is based on previous versions of the QOL instrument developed by researchers at the City of Hope National Medical Centre (Grant, Padilla, and Ferrell). This instrument was revised over a one year pilot by Hassey-Dow and Ferrell. The revised instrument included 41 items representing the four domains of quality of life incorporating physical, psychological, social, and spiritual well being. The present study was conducted as a mail survey to the membership (n=1,200) of the National Coalition for Cancer Survivorship with 686 subjects responding to the survey. This survey included a Demographic tool, QOL-CS and the FACT-G tool developed by Cella. Psychometric analysis, performed on 686 respondents, included measures of reliability and validity. Two measures of reliability included test-retest and internal consistency. The overall QOL-CS tool test-retest reliability was 0.89 with subscales of Physicalr=0.88, Psychologicalr=0.88, Socialr=0.81, and Spiritual,r=0.90. The second measure of reliability was computation of internal consistency using Cronbach's coefficient as a measure of agreement between items and subscales. Analysis revealed an overallr=0.93. Subscale alphas average ranged fromr=0.71 for spiritual well being,r=0.77 for physical,r=0.81 for social, andr=0.89 for psychological.Several measures of validity were used to determine the extent to which the instrument measured the concept of QOL in cancer survivors. The first method of content validity was based on a panel of QOL researchers and nurses with expertise in oncology. The second measure used stepwise multiple regression to determine factors most predictive of overall QOL in cancer survivors. Seventeen variables were found to be statistically significant accounting for 91% of the variance in overall QOL. The fourth measure of validity used Pearson's correlations to estimate the relationships between the subscales of QOL-CS and the subscales of the established FACT-G tool. There was moderate to strong correlation between associated subscales including QOL-CS physical to FACT physical (r=0.74), QOL-CS Psych to FACT Emotional (r=0.65), QOL Social to FACT Social (r=0.44). The overall QOL-CS correlation with the FACT-G was 0.78. Additional measures of validity included correlations of indimeasures of validity included correlations of individual items of the QOL-CS tool, factor analysis, and construct validity discriminating known groups of cancer survivors. Findings demonstrated that the QOL-CS and its subscales adequately measured QOL in this growing population of cancer survivors.     

A new measure for assessing the health-related quality of life of patients with vertigo, dizziness or imbalance: the VDI questionnaire

Vertigo, dizziness and imbalance are frequent symptoms among patients in clinical practice. We present the development of a new multipurpose measure specific to patients with these symptoms: the VDI questionnaire. Items of the VDI questionnaire were generated through an international panel of clinicians, in-depth interviews with 25 patients and an extensive literature search. Items were reduced by qualitative and quantitative methods. Psychometric properties were tested in 130 patients recruited in primary care general practices, neurologists and ENT out-patient clinics. Patients were clinically evaluated and administered several specific and generic health status instruments: the Balance Scale, the SF-12 Health Survey and the General Health Questionnaire 12 items. The VDI symptoms and the VDI health related quality of life (HRQoL) scales were administered during the visit and some weeks after. Correlation and confirmatory factor analysis were used. Reliability of the VDI was high (0.92 for VDI HRQoL scale and 0.86 for VDI symptoms). VDI scores were more correlated with Balance Scale scores than with mental health indicators. All factor loadings were significantly different from zero and confirmed the expected relations. In the second administration, VDI scores showed a deterioration among those reporting a worsening in their symptoms and an improvement among those reporting feeling better. The data presented suggest that the VDI questionnaire is a reliable, valid and responsive instrument for patients with vertigo, dizziness or imbalance. The VDI questionnaire could be a useful complement of the clinical evaluation of these patients at both group and individual level.     

Factor analysis, causal indicators and quality of life

Exploratory factor analysis (EFA) remains one of the standard and most widely used methods for demonstrating construct validity of new instruments. However, the model for EFA makes assumptions which may not be applicable to all quality of life (QOL) instruments, and as a consequence the results from EFA may be misleading. In particular, EFA assumes that the underlying construct of QOL (and any postulated subscales or factors) may be regarded as being reflected by the items in those factors or subscales. QOL instruments, however, frequently contain items such as diseases, symptoms or treatment side effects, which are causal indicators. These items may cause reduction in QOL for those patients experiencing them, but the reverse relationship need not apply: not all patients with a poor QOL need be experiencing the same set of symptoms. Thus a high level of a symptom item may imply that a patient's QOL is likely to be poor, but a poor level of QOL need not imply that the patient probably suffers from that symptom. This is the reverse of the common EFA model, in which it is implicitly assumed that changes in QOL and any subscales cause or are likely to be reflected by corresponding changes in all their constituent items; thus the items in EFA are called effect indicators. Furthermore, disease-related clusters of symptoms, or treatment-induced side-effects, may result in different studies finding different sets of items being highly correlated; for example, a study involving lung cancer patients receiving surgery and chemotherapy might find one set of highly correlated symptoms, whilst prostate cancer patients receiving hormone therapy would have a very different symptom correlation structure. Since EFA is based upon analyzing the correlation matrix and assuming all items to be effect indicators, it will extract factors representing consequences of the disease or treatment. These factors are likely to vary between different patient subgroups, according to the mode of treatment or the disease type and stage. Such factors contain little information about the relationship between the items and any underlying QOL constructs. Factor analysis is largely irrelevant as a method of scale validation for those QOL instruments that contain causal indicators, and should only be used with items which are effect indicators.     

个体化护理对胰腺癌患者负面情绪及生活质量的影响

目的：对个体化护理方案改善胰腺癌患者负面情绪及生活质量的情况进行探讨。方法：选择2012年2月-2014年2月收治的100例胰腺癌患者作为研究对象,随机抽样分为观察组及对照组各50例。观察组及对照组分别采用个体化护理及常规护理并在患者入院及出院时对其焦虑、抑郁及生活质量进行评估。结果：在负面情绪方面,对照组较干预前无明显变化,而观察组焦虑及抑郁评分均有明显下降,并且两组差异有统计学意义（P〈0.05）。在生活质量上,虽然两组患者在干预过后生活质量评分都有了改善,但是观察组的改善情况优于对照组（P〈0.05）。结论：个体化护理方案能改善胰腺癌患者负面情绪并且可提高生活质量。     

The philosophy of health-related quality of life translation

Conventional translation strategies are limited because they enshrine deficiencies of the original questionnaire and do not permit modifications that reflect differences in culture and values. An alternative philosophy would require a conceptual definition of what one wanted to measure and would allow flexibility in the methods to achieve this goal. If an investigator had considerable time and resources, he or she could replicate the process used to construct the original English language questionnaire. With very limited resources, he or she could still omit irrelevant items, include new items, and modify the wording of questions and response options. This new philosophy allows improvement in content and presentation, and moves away from the hegemony of the American middle-class outlook in quality of life questionnaires.The work reported was supported, in part, by the Ontario Ministry of Health.     

‘Equivalence’ and the translation and adaptation of health-related quality of life questionnaires

The increasing use of health-related quality of life (HRQOL) questionnaires in multinational studies has resulted in the translation of many existing measures. Guidelines for translation have been published, and there has been some discussion of how to achieve and assess equivalence between source and target questionnaires. Our reading in this area had led us, however, to the conclusion that different types of equivalence were not clearly defined, and that a theoretical framework for equivalence was lacking. To confirm this we reviewed definitions of equivalence in the HRQOL literature on the use of generic questionnaires in multicultural settings. The literature review revealed: definitions of 19 different types of equivalence; vague or conflicting definitions, particularly in the case of conceptual equivalence; and the use of many redundant terms. We discuss these findings in the light of a framework adapted from cross-cultural psychology for describing three different orientations to cross-cultural research: absolutism, universalism and relativism. We suggest that the HRQOL field has generally adopted an absolutist approach and that this may account for some of the confusion in this area. We conclude by suggesting that there is an urgent need for a standardized terminology within the HRQOL field, by offering a standard definition of conceptual equivalence, and by suggesting that the adoption of a universalist orientation would require substantial changes to guidelines and more empirical work on the conceptualization of HRQOL in different cultures.     

Interpretation of quality of life changes

The clinical significance of quality of life changes has little to do with the QOL as a measure, but is rather a reflection on the novelty of the measures and researcher's inexperience in their use. This article discusses possible ways of evaluating quality of life measures in terms of patient-clinician interactions and how the clinician can assess the importance of these changes of QOL in terms of treatment and management of disease.Presented at Quality of Life Assessment, DIA Workshop, Nice, France, 23 February, 1993.     

乳腺癌手术患者负性情绪与生活质量相关性分析

目的探讨负性情绪与乳腺癌手术患者生活质量相关性,为改善患者生活质量提供理论依据。方法对68例乳腺癌手术患者进行焦虑自评量表(SAS)、抑郁自评量表(SDS)和生活质量评定量表(QOLI-74)调查,并分析负性情绪与患者生活质量相关性。结果乳腺癌组SAS、SDS评分,均显著高于对照组(P<0.05),生活质量总分及各条目评分均显著低于对照组(P<0.05);焦虑合并抑郁患者整体生活质量评分显著低于单纯焦虑或单纯抑郁患者,差异有统计学意义(P<0.05)。乳腺癌手术患者抑郁、焦虑评分与生活质量各维度呈显著负相关(r<0,P<0.05)。结论乳腺癌手术患者普遍存在焦虑、抑郁,负性情绪越严重,其生活质量越差。     

Optimism and health-related quality of life in adolescents with cancer

Objective   To delineate the relationship between optimism and health-related quality of life (HRQOL) and quality of life (QOL) in adolescents with cancer living in the Bronx, New York.
Methods   Optimism was assessed using the Life Orientation Test, Revised (LOT-R). HRQOL and QOL were measured using the Pediatric Quality of Life Inventory, Cancer Module, Acute Version and The Pediatric Quality of Life Inventory, Generic Core Scale, respectively. Associations between optimism and HRQOL and QOL were assessed using Pearson's product-moment correlations.
Results   Twenty-three adolescents participated in this study; the mean age was 16 and the majority was male. This sample was highly optimistic and reported high HRQOL and QOL. Optimism was correlated with less reported pain and hurt, better communication with doctors, higher reported psychological functioning and higher overall QOL.
Conclusion   Optimism is associated with higher QOL in inner city adolescents with cancer. Further research should assess whether interventions that increase optimism lead to greater QOL in this population.     

护理干预对糖尿病患者生存质量的影响

目的:探讨护理干预对糖尿病患者生存质量的影响。方法:选择在某医院接受治疗的62例2型糖尿病患者,随机分为实验组和对照组,实验组32人,对照组30人,对照组在住院期间给予常规宣教,实验组在此基础上进行有针对性的个体化宣教,并在患者出院后继续进行护理干预,6个月后采用糖尿病患者生存质量特异性量表对这62例糖尿病患者进行问卷调查。结果:实验组患者的生存质量明显提高,各项指标得到显著改善,对照组各指标无显著性变化。结论:对糖尿病患者采取必要的护理干预措施,能帮助糖尿病病人提高生存质量。     

家庭护理干预对精神分裂症患者生活质量的影响

目的观察和分析家庭护理干预对精神分裂症患者生活质量的影响。方法 82例精神分裂症患者随机分为对照组和干预组各41例,对照组实施常规护理;干预组在对照组基础上实施家庭护理干预。观察两组患者出院时和干预6个月后日常生活能力和生活质量及社会支持、6个月复发率、治疗依从性。结果出院时两组患者日常生活能力和生活质量及社会支持评分比较,差异无统计学意义(P>0.05);护理干预6个月后,两组患者日常生活能力和生活质量及社会支持评分均得到明显改善,且干预组优于对照组(P<0.05)。干预组治疗依从率显著高于对照组(χ2=14.19,P<0.05),6个月复发率显著低于对照组(χ2=6.27,P<0.05)。结论对精神分裂症患者实施家庭护理干预,可有效提高患者治疗依从性和生活质量,改善患者社会功能,降低复发率。