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1.  Assessment of quality of life in patients with angina pectoris 
Netherlands Heart Journal  2002;10(1):13-18.
Two major issues in quality of life (QOL) research are the patient's opinion as a contributing factor in QOL assessments, and the lack of sensitivity of QOL assessments.
To review results from recent research by the Dutch Mononitrate Quality Of Life (DUMQOL) Study Group relevant to these two issues.
Using a test battery including Stewart's Short Form (SF)-36 Questionnaire and the DUMQOL-50 questionnaire, the DUMQOL Study Group tested the hypothesis that the patient's opinion might be an independent determinant of QOL. To do this, a stepwise multiple regression analysis of data from 82 patients attending an outpatient clinic with stable angina pectoris was performed. Secondly, using an odds ratio approach to QOL scores in 1350 outpatients with stable angina pectoris who were attending a clinic, the DUMQOL Study Group assessed the question whether relative scores might provide increased precision in estimating the effects of patient characteristics on QOL data.
Psychological distress was the most important contributor to QOL (beta 0.43, p<0.0001). Also, the patient's opinion on his/her QOL significantly contributed to QOL (beta 0.22, p=0.032). Physical health status according to the patient's judgement only made a borderline contribution (beta 0.19, p=0.71), while the physician's judgement was not associated with QOL at all (beta 0.11, p=0.87). Regarding the second issue, increased QOL difficulties were observed in New York Heart Association (NYHA) angina class III-IV patients, in patients with comorbidity, as well as in female and elderly patients. Odds ratios can be used in these categories to predict the benefit from treatments.
Recent QOL research of the DUMQOL Study Group allows conclusions to be drawn that are relevant to clinical practice. QOL should be defined in a subjective rather than an objective method. The patient's opinion is an important independent contributor to QOL. The comparison of absolute QOL scores lacks the sensitivity to truly estimate QOL. The odds ratio approach of QOL scores provides increased precision in estimating QOL.
PMCID: PMC2499672
angina pectoris; quality of life; QOL; QOL assessments; odds ratios
2.  Evaluating the quality of life of cancer patients: assessments by patients, significant others, physicians and nurses 
British Journal of Cancer  1999;81(1):87-94.
This study examined the usefulness of caregiver ratings of cancer patients' quality of life (QOL), an issue of relevance to both adequate patient care and to the possible use of proxy QOL raters in clinical studies. We compared QOL ratings of 90 cancer patients receiving inpatient chemotherapy with those provided by their significant others (most often the spouse), physicians and nurses. During patients' scheduled appointment for receiving chemotherapy on a clinical ward, all raters completed independently the Dartmouth COOP Functional Health Assessment charts/WONCA, an instrument developed by a cooperative group of primary care physicians to briefly assess a core set of seven QOL domains (physical fitness, feelings, daily and social activities, overall health, pain and quality of life) by single items with five response options. With few exceptions, mean scores of the proxy raters were equivalent or similar to those of the patients. Most patient–proxy correlations varied between 0.40 and 0.60, indicating a moderate level of agreement at the individual level. Of all comparisons made, 41% were in exact agreement and 43% agreed within one response category, leaving 17% more profound patient–proxy discrepancies. Disagreement was not dependent on the type of proxy rater, or on raters' background characteristics, but was influenced by the QOL dimension under consideration and the clinical status of the patient. Better patient–proxy agreement was observed for more concrete questions (daily activities, pain) and for patients with either a very good (ECOG 0) or poor (ECOG 3) performance status. The results indicate that both significant others and health care providers can be useful sources of information about cancer patients' QOL. © 1999 Cancer Research Campaign
PMCID: PMC2374350  PMID: 10487617
quality of life; proxy respondents; agreement; questionnaire
3.  The Relationship between Qi Deficiency, Cancer-related Fatigue and Quality of Life in Cancer Patients 
Background: Qi (氣 qì) refers to the vital energy of the body in Traditional Chinese medicines (TCM). Qi deficiency (氣虛 qì xū) is the most common symptom in cancer patients according to the concept of TCM. We hypothesized that cancer patients with Qi deficiency suffer from poor quality of life (QOL) and fatigue.
Method: Among the 256 registered cancer patients screened at our outpatient clinic, a total of 198 were enrolled. The inclusion criteria were (1) age between 18 and 70 years, (2) cancer diagnosis confirmed by the professional physician, (3) being Chinese, and (4) Eastern Cooperative Oncology Group (ECOG) performance status rating (PSR) ≤ 3. The major outcome is the difference in QOL score in cancer patients with and without Qi deficiency.
Results: The initial results showed statistically significant differences in WHO-QOL scores in physical, psychological, and social domains between the groups with and without Qi deficiency as well as the groups with and without cancerrelated fatigue (CRF). All patients with CRF present were also diagnosed as Qi deficient. In addition, among the patients with no CRF, 39.9% (69/173) were diagnosed as suffering from Qi deficiency, which led to poor QOL.
Conclusions: The present study showed statistically significant difference in WHO-QOL scores in physical, psychological, and social domains between the groups with and without Qi deficiency as well as the groups with and without CRF. Cancer patients diagnosed with Qi deficiency or CRF have poor QOL. The concept of Qi deficiency in TCM might be applied to cancer health care.
PMCID: PMC3942915  PMID: 24716125
Qi deficiency; Fatigue; Cancer-related Fatigue; Quality of life; Traditional Chinese Medicine
4.  Quality of life of patients on the waiting list for coronary angiography 
Netherlands Heart Journal  2006;14(9):292-296.
Providing adequate medical information and ensuring that patients do not identify with fellow-sufferers who are doing worse are significant contributors to a better quality of life (QOL) in cardiac patients. In addition, in these patients gender and the level of psychic tension are significant predictors of QOL. We do not know (1) whether we can improve QOL by increasing patients' ability to cope with the unpleasant aspects of the underlying condition, (2) whether gender and level of psychic tension interact or act independently.
To assess both questions.
Thirty-eight patients on the waiting list for coronary angiography were assessed with validated test batteries. To increase the patients' ability to cope, they were randomly assigned to read either (1) the comments of a patient who had previously been treated successfully or (2) general information. The former information, unlike the latter, was assumed to improve coping ability and, thus, provide better QOL. Homogeneity of the patient group was estimated by Cronbach's alphas. For analysis, linear regression and general factorial analyses of variance were applied.
The group was psychologically homogeneous as indicated by Cronbach's alphas which were generally over 75%. There was a significant or close to significant association between the use of coping information and a better mobility and social performance QOL (p<0.05 and p<0.06). High levels of psychic tension were associated with low self-perceived QOL and low psychological scores (both p<0.02). Female gender was associated with lower mobility, lower psychological scores and lower overall QOL (p<0.05, p<0.02 and p<0.05). A significant or close to significant interaction was observed between gender and psychic tension as combined determinants of self-perceived QOL, mobility index, and overall QOL index (p<0.03, p<0.09, and p<0.05). Separate assessments of these determinants showed that female gender was the strongest determinant of a low QOL.
In patients on the waiting list for coronary angiography, an increased ability to cope with the unpleasant aspects of a possible underlying heart condition improves QOL. Female gender and a high level of psychic tension place patients at risk for a low QOL. It is to be hoped that this paper will raise physicians' awareness of these psychological mechanisms and that they will be given adequate attention in the future, particularly in female patients.
PMCID: PMC2557294
quality of life; social comparison; coronary angiography
5.  Quality of life in brain metastases radiation trials: a literature review 
Current Oncology  2008;15(5):25-45.
An estimated 20%–40% of cancer patients will develop brain metastases. Whole-brain radiotherapy (wbrt) is the standard treatment for patients with brain metastases. Although wbrt can reduce neurologic symptoms, the median survival following wbrt is between 3 and 6 months. Given this limited survival, it is important to consider quality of life (qol) when treating patients with brain metastases. However, few studies have focused on qol and improvement in patient-rated symptoms as primary outcomes.
For an accurate measurement of the extent to which previous trials have utilized qol tools to evaluate the efficacy of wbrt for treatment of brain metastases, we undertook a literature review to examine the common endpoints and qol instruments used.
We conducted a systematic search using the medline (1950 to December 2007) and Cochrane Central Register of Controlled Trials (4th quarter 2007) databases. Eligible studies investigated wbrt in one of the study arms. The following outcomes were included: median survival, overall survival, neurologic function, 1-year local control, and overall response; use of qol instruments, performance status scales, and neurologic function assessments; and use of other assessment tools. Patient-rated qol instruments were defined as those that strove to assess all dimensions of qol; observer-rated performance instruments such as the Karnofsky performance status (kps) were deemed to be performance scales.
We identified sixty-one trials that included wbrt as a treatment for brain metastases. Of these sixty-one trials, nine evaluated the treatment of a single brain metastasis, and fifty-two evaluated the treatment of multiple brain metastases. Although fifty-five of the trials employed a qol instrument, few trials focused on qol as an outcome. We found 23 different instruments used to evaluate qol. The most commonly employed instrument was the kps (n = 33), followed by various neurologic function classification scales (n = 21). A preponderance of the studies used 1 (n = 26, 43%) or 2 (n = 21, 34%) qol instruments.
A total of fourteen published trials on brain metastases included an evaluation of the study population’s qol. Those trials included three that used the Functional Assessment of Cancer Therapy–General scale and Brain subscale instrument, three that used the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (C30) and the Brain Cancer Module 20 instrument, two that used study-designed qol instruments, one that used the Edmonton Symptom Assessment Scale, two that used the Spitzer Quality of Life index, and three that used the kps to evaluate qol. Some trials reported deterioration in qol after wbrt in patients with poorer prognosis; other trials detected an improvement in qol after wbrt in patients with better prognosis.
To date, fourteen trials in brain metastases that have included an evaluation of the study population’s qol have been published. Although some studies showed that certain parameters of qol deteriorate after wbrt, other studies showed that qol in patients with better prognosis is improved after wbrt. Because a standard, validated qol instrument has not been used for this patient population, a comparison of findings concerning qol between the studies is difficult. The present review emphasizes the need to include qol measures in future wbrt clinical trials for brain metastases.
PMCID: PMC2582512  PMID: 19008990
Brain metastasis; quality of life; whole-brain radiotherapy
6.  Benchmarking the burden of 100 diseases: results of a nationwide representative survey within general practices 
BMJ Open  2011;1(2):e000215.
To assess the burden of diseases and quality of life (QOL) of patients for a large variety of diseases within general practice.
In a representative nationwide cross-sectional study, a total of 825 general practitioners (GPs) were randomly selected from across France. Independent investigators recruited 8559 patients attending the GPs' practices. Data on QOL (12-Item Short Form questionnaire) and other individual characteristics were documented by the independent investigators for all participants in the waiting room. Medical information was recorded by GPs. Sampling was calibrated to national standards using the CALMAR (CALage sur MARges) weighting procedure. Associations of lower scores (ie, below vs above the first quartile) of physical and mental component scores (physical component summary score (PCS) and mental component summary score (MCS), respectively) with main diseases and patients characteristics were estimated using multivariate logistic regression. Weighted morbidity rates, PCS and MCS were computed for 100 diagnoses using the International Classification of Diseases (9th version).
Overall mental impairment was observed among patients in primary care with an average MCS of 41.5 (SD 8.6), ranging from 33.0 for depressive disorders to 45.3 for patients exhibiting fractures or sprains. Musculoskeletal diseases were found to have the most pronounced effect on impaired physical health (OR=2.31; 95% CI 2.08 to 2.57) with the lowest PCS (45.6 (SD 8.8)) and ranked first (29.0%) among main diagnoses experienced by patients followed by cardiovascular diseases (26.7%) and psychological disorders (22.0%). When combining both prevalence and QOL, musculoskeletal diseases represented the heaviest burden in general practice.
Etude épidémiologique de l'Impact de santé public sur 3 groupes de pathologies (EPI3) is the first study to provide reference figures for burden of disease in general practice across a wide range of morbidities, particularly valuable for health-economics and healthcare-system evaluation.
Article summary
Article focus
The impact of diseases on quality of life (QOL) in general practice has been assessed among selected samples of patients, usually from studies including a limited number of medical practices and/or focusing mainly on chronic conditions.
There is a clear need for more data on QOL of patients in primary care; the aim of the Etude épidémiologique de l'Impact de santé public sur 3 groupes de pathologies (EPI3) survey was to provide reference figures for disease burden in this setting.
Key messages
The EPI3 study was a cross-sectional survey combining unique data from patients and general practitioners (GPs), and allowed provision of reference figures for the vast majority of diseases encountered in primary care for a large number of patients.
The study highlighted the burden of musculoskeletal and psychological disorders, experienced by more than half the patients.
Although social and medical determinants of patients' QOL were somewhat similar than those found in previous studies in primary care, the EPI3 survey showed more pronounced mental impairment in French patients.
Strengths and limitations of this study
No nationwide study on burden of disease combining both prevalence measures and QOL assessment has been conducted to date, addressing such a large variety of diseases in general practice.
On-site selection and recruitment by an independent investigator limited the possibility of selection bias among patients, and the participation of physicians added high specificity to medical data collection.
A study design providing a high specificity in data collection led to a relatively low response rate from GPs. However, stratified recruitment phases and sample sizes from both GPs and patients highly representative of national standards ensured the strong external validity of the results.
Home consultations, which are common among GPs in France, were not surveyed which could have led to an underestimation of the burden of disease.
PMCID: PMC3221295  PMID: 22102638
7.  Translation and validation of a Japanese version of the irritable bowel syndrome-quality of life measure (IBS-QOL-J) 
To compare quality of life (QOL) for patients with irritable bowel syndrome (IBS) between the U.S. and Japan, it is indispensable to develop common instruments. The IBS-QOL, which is widely used in Western countries, was translated into Japanese as there has been a lack of Japanese disease-specific QOL measures for IBS.
The original 34 items of the IBS-QOL were translated from English into Japanese through two independent forward translations, resolution, back translation, and resolution of differences. Forty nine patients who had GI symptoms but did not have any organic diseases (including 30 IBS patients diagnosed by Rome II criteria) were recruited from Tohoku University Hospital in Sendai, Japan and completed a Japanese version of the IBS-QOL (IBS-QOL-J) concomitant with a Japanese version of the IBS severity index (IBSSI-J) twice within 7–14 days.
The IBS-QOL-J demonstrated high internal consistency (Cronbach's alpha; 0.96) and high reproducibility (intraclass correlation coefficient; 0.92, p < 0.001). Convergent analyses confirmed that the overall score of IBS-QOL-J was significantly correlated with overall severity of IBS symptoms on the IBSSI-J (r = -0.36, p = 0.01) and with the individual items on the IBSSI-J that assess interference with life in general (r = -0.47, p = 0.001) and dissatisfaction with bowel habits (r = -0.32, p < 0.05). Eight patients who reported continuous abdominal pain in the past 6 months had significantly lower scores in the IBS-QOL-J than those who did not (53.7 +- 12.7 vs. 73.6 +- 19.5, p < 0.01). Age, sex, education or marital status did not affect scores on the measure.
The IBS-QOL-J is a reliable instrument to assess the disease-specific QOL for IBS. Considering cross-cultural comparison, this measure is likely to be a valuable tool to investigate the QOL in Japanese patients with IBS.
PMCID: PMC1832201  PMID: 17371576
8.  Quality-of-Life Outcomes for Adjuvant Chemotherapy in Early-Stage Non–Small-Cell Lung Cancer: Results From a Randomized Trial, JBR.10 
Journal of Clinical Oncology  2008;26(31):5052-5059.
Adjuvant chemotherapy for early stage non–small-cell lung cancer (NSCLC) is now the standard of care, but there is little information regarding its impact on quality of life (QOL). We report the QOL results of JBR.10, a North American, intergroup, randomized trial of adjuvant cisplatin and vinorelbine compared with observation in patients who have completely resected, stages IB to II NSCLC.
Patients and Methods
QOL was assessed with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 and a trial-specific checklist at baseline and at weeks 5 and 9 for those who received chemotherapy and at follow-up months 3, 6, 9, 12, 18, 24, 30 and 36. A 10-point change in QOL scores from baseline was considered clinically significant.
Four hundred eighty-two patients were randomly assigned on JBR.10. A total of 173 patients (82% of the expected) in the observation arm and 186 (85% of expected) in the chemotherapy arm completed baseline QOL assessments. The two groups were comparable, with low global QOL scores and significant symptom burden, especially pain and fatigue, after thoracotomy. Changes in QOL during chemotherapy were relatively modest; fatigue, nausea, and vomiting worsened, but there was a reduction in pain and no change in global QOL. Patients in the observation arm showed considerable improvements in QOL by 3 months. QOL, except for symptoms of sensory neuropathy and hearing loss, in those treated with chemotherapy returned to baseline by 9 months.
The findings of this trial indicate that the negative effects of adjuvant chemotherapy on QOL appear to be temporary, and that improvements (with a return to baseline function) are likely in most patients.
PMCID: PMC2652099  PMID: 18809617
9.  The impact of iron overload and its treatment on quality of life: results from a literature review 
To assess the literature for the impact of iron overload and infusion Iron Chelation Therapy (ICT) on patients' quality of life (QoL), and the availability of QoL instruments for patients undergoing infusion ICT. Also, to obtain patients' experiences of having iron overload and receiving infusion ICT, and experts' clinical opinions about the impact of treatment on patients' lives.
A search of studies published between 1966 and 2004 was conducted using Medline and the Health Economic Evaluation Database (HEED). Qualitative results from patient and expert interviews were analysed. Hand searching of relevant conference abstracts completed the search.
Few studies measuring the impact of ICT with deferoxamine (DFO) on patients QoL were located (n = 15). QoL domains affected included: depression; fatigue; dyspnoea; physical functioning; psychological distress; decrease in QoL during hospitalization. One theme in all articles was that oral ICT should improve QoL. No iron overload or ICT-specific QoL instruments were located in the articles. Interviews revealed that the impact of ICT on patients with thalassemia, sickle cell disease, and myelodysplastic syndromes is high.
A limited number of studies assessed the impact of ICT or iron overload on QoL. All literature suggested a need for easily administered, efficacious and well tolerated oral iron overload treatments, given the impact of current ICT on adherence. Poor adherence to ICT was documented to negatively impact survival. Further research is warranted to continue the qualitative and quantitative study of QoL using validated instruments in patients receiving ICT to further understanding the issues and improve patients QoL.
PMCID: PMC1592476  PMID: 17007645
10.  Burden of disease in patients with Morquio A syndrome: results from an international patient-reported outcomes survey 
Morquio A syndrome (or mucopolysaccharidosis IVa) is an ultra-rare multi-organ disease, resulting in significantly impaired functional capacity, mobility and quality of life (QoL).
This patient-reported outcomes survey evaluated the global burden of Morquio A among adults (≥18 years, N = 27) and children (7-17 years, N = 36), including the impact on mobility, QoL, pain and fatigue. QoL was assessed using the general Health-Related Quality of Life (HRQoL) questionnaire (the EuroQol [EQ]-5D-5L). Pain and pain interference with daily activities were assessed using the Brief Pain Inventory Short Form (BPI-SF) in adults and the Adolescent Pediatric Pain Tool (APPT) in children. Fatigue was assessed by questioning the patients on the number of evenings in a week they felt extremely tired.
The clinical data showed a wide heterogeneity in clinical manifestations between patients, with the majority of patients showing differing levels of endurance, short stature, bone and joint abnormalities, abnormal gait and eye problems. Mobility was considerably impaired: 44.4% of children and 85.2% of adult patients were using a wheelchair. High wheelchair reliance significantly reduced QoL. This was mainly driven by reduced scores in the Mobility, Self-care, and Usual Activity domains. The HRQoL utility values were 0.846, 0.582 and 0.057 respectively in adults not using a wheelchair, using a wheelchair only when needed and always using a wheelchair; values were 0.534, 0.664 and –0.180 respectively in children. Employed adult patients had a better HRQoL than unemployed patients (HRQoL utility value 0.640 vs. 0.275, respectively).
64% of children and 74% of adult patients had joint pain; fatigue was reported by 69% of children and 63% of adults. Overall, increased mobility was associated with more severe and widespread pain and more fatigue.
The HRQoL of Morquio A patients is mainly driven by the ability to remain independently mobile without becoming wheelchair dependent. Their QoL reduces dramatically if they always have to use their wheelchair. Even a slightly better mobility (wheelchair use only when needed) greatly improves QoL. Maintenance of functional capacity and mobility paired with better pain management are likely to improve QoL.
PMCID: PMC4016149  PMID: 24602160
Mucopolysaccharidosis IV; Morquio A syndrome; Patient-reported outcomes; Quality of life; Wheelchairs; Mobility; Pain measurement; Fatigue; EQ-5D-5L
11.  Physicians' knowledge of health-related quality of life and perception of its importance in daily clinical practice 
Health-related quality of life (QoL) has become a crucial outcome in medical care. However, few studies have assessed physician knowledge of QoL and rate of physicians adopting QoL measures in clinical practice. The present study aimed at assessing the level of knowledge of QoL and the perceived importance of incorporating QoL assessment in clinical practice among physicians of a tertiary level academic hospital in Rome, Italy.
Materials and methods
A survey study performed through the distribution of a questionnaire assessing knowledge of QoL studies that used the SF-36 scale, participation in studies evaluating QoL as well as knowledge of journals publishing articles on QoL Physicians and residents at the hospital Policlinico Gemelli, Catholic University of Rome.
Three-hundred nine physicians completed the questionnaire. Thirty-eight percent % reported knowing studies on QoL and using their results in clinical practice or for research purposes; 29% reported knowing the SF-36 questionnaire; 30% stated that at least one study assessing QoL had been conducted in their department. Fourty-six percent % stated that QoL must influence much or very much diagnostic choices and an even higher percentage reported that QoL must influence much or very much therapeutic and palliative strategies (70.8% and 91.3%, respectively). Reported barriers to the use of QoL measures in clinical practice were related to time constraints (8.7%) but also to doubts on methodological issues of QoL (30.7%). The large majority of physicians (94.3%) would have used more expensive drugs if these could improve QoL.
The present study shows that in a tertiary level academic italian hospital one third of the physicians, reported to know QoL measures and that more than 80% of them would like to use QoL in their daily clinical practice. Future studies are needed to identify the best strategies to implement the use of QoL measures in clinical practice.
PMCID: PMC2868041  PMID: 20416062
12.  Mental Quality of Life Is Related to a Cytokine Genetic Pathway 
PLoS ONE  2012;7(9):e45126.
Quality of life (QoL) in patients with chronic disease is impaired and cannot be solely explained by disease severity. We explored whether genetic variability and activity contributes to QoL in patients with Marfan syndrome (MFS), a genetic connective tissue disorder.
Methodology/Principal Findings
In 121 MFS patients, patient characteristics (i.e. demographics and MFS-related symptoms) were assessed. Patients completed the SF-36 to measure QoL. In addition, transcriptome wide gene expression and 484 Single Nucleotide Polymorphysms (SNPs) in cytokine genes were available. QoL was first analyzed and associated with patient characteristics. Patients’ physical QoL was impaired and weakly related with age and scoliosis, whereas mental quality of life (MCS) was normal. To explain a largely lacking correlation between disease severity and QoL, we related genome wide gene expression to QoL. Patients with lower MCS scores had high expression levels of CXCL9 and CXCL11 cytokine-related genes (p = 0.001; p = 0.002); similarly, patients with low vitality scores had high expression levels of CXCL9, CXCL11 and IFNA6 cytokine-related genes (p = 0.02; p = 0.02; p = 0.04), independent of patient characteristics. Subsequently, we associated cytokine related SNPs to mental QoL (MCS and vitality). SNP-cluster in the IL4R gene showed a weak association with MCS and vitality (strongest association p = 0.0017). Although overall mental QoL was normal, >10% of patients had low scores for MCS and vitality. Post-hoc analysis of systemic inflammatory mediators showed that patients with lowest MCS and vitality scores had high levels of CCL11 cytokine (p = 0.03; p = 0.04).
Variation in the cytokine genetic pathway and its activation is related to mental QoL. These findings might allow us to identify and, ultimately, treat patients susceptible to poor QoL.
PMCID: PMC3458023  PMID: 23049769
13.  The Impact of Chronic Idiopathic Urticaria on Quality of Life in Korean Patients 
Annals of Dermatology  2009;21(3):226-229.
Chronic idiopathic urticaria (CIU) is a relatively common disease, and yet not much is known about the causative factors or its pathophysiology, which makes it difficult to cure. Due to its chronic nature, many patients have significantly reduced quality of life (QOL).
The purpose of this study was to assess the impact of CIU on QOL of Korean patients, and to determine whether a relationship exists between QOL and the severity of disease.
One hundred sixty three patients with CIU, who first visited our out-patient clinic between August 2005 and July 2007, were asked to complete two questionnaires: one designed to assess the clinical features of their disease; the other on the influences of CIU on their daily lives. QOL was divided into six categories: mental status (MS), daily living activities (DLA), leisure activities (LA), self-perception (SP), treatment-induced restrictions (TIR), and social functions (SF). All of the QOL scores were recalibrated to a 0~100 scale, with 100 indicating the worst QOL, and 0 the best.
The average QOL scores obtained from the questionnaire were as follows: SP (13.1±4.6), DLA (12.0±4.3), MS (10.3±3.3), SF (8.5±3.4), LA (6.1±3.0), and TIR (5.5±2.6). SP was the domain that was most affected; TIR the least. There were positive correlations between pairs of the six different QOL categories (p<0.001). These results demonstrate that CIU exerts an influence on many aspects of QOL. TIR was significantly affected in longer term CIU cases (p<0.05), while SP, MS, DLA, SF, and SR scores did not correlate with disease duration. Disease severity was found to have a significant impact on SP, MS, SF, and LA (p<0.05). In patients with concurrent physical urticaria, DLA and SF scores were significantly affected (p<0.05).
Based on these results, it is suggested that CIU has a negative impact on QOL in Korean patients. Therefore, it is important to recognize the effects CIU can have on QOL and consider them in evaluating the response to treatment.
PMCID: PMC2861226  PMID: 20523794
Chronic idiopathic urticaria; Quality of life; Questionnaire
14.  Factors that Affect the Quality of Life at 3 Years Post-Stroke 
Background and Purpose
Elucidating the factors that predict the quality of life (QOL) in stroke patients is important. However, the residual sensory symptoms that are common in stroke patients have not usually been included as factors that influence the QOL. The purpose of the present study was to elucidate the factors that predict the QOL of chronic-stage patients with special attention to residual sensory symptoms.
We examined 214 patients who had experienced a first-time stroke during the subacute (i.e., approximately 3 months poststroke) stage; 151 patients from this group were followed up by telephone interview during the chronic (i.e., approximately 3 years poststroke) stage. Physical disabilities, including motor dysfunction, sensory symptoms that included central poststroke pain (CPSP, described using a standardized questionnaire with a visual analogue scale), activities of daily living (ADL, measured by the Barthel index score), as well as the presence of depression (using the DSM IV criteria), were assessed during both the subacute and chronic stages. Economic and job statuses during the chronic stage were also assessed. QOL ratings were determined by the World Health Organization QOL scale.
The following factors at 3 months poststroke were related to low QOL at 3 years poststroke: dependency in ADL, motor dysfunction, depression, and CPSP. At 3 years poststroke, dependency in ADL, depression, CPSP, poor economic status, and unemployment were all factors that were related to low QOL. Multiple regression analysis showed that dependency in ADL (19%), presence of CPSP (12%), and poor economic status (10%) were important explanatory factors for overall QOL. In the analysis of QOL subdomains, the most important explanatory factors were CPSP for both physical and psychological domains, dependency in ADL for both independence and social-relationships domains, economic status for the environmental domain, and female sex for the spiritual domain.
We conclude that dependency in ADL, depression, low socioeconomic status, and the presence of CPSP either at 3 months or 3 years poststroke are factors that are related to a low QOL at 3 years poststroke. The recognition of these factors may allow strategies to be developed to improve the QOL for stroke patients.
PMCID: PMC2854941  PMID: 20396483
Depression; Central poststroke pain; Cerebrovascular disease; Quality of life
15.  Quality of life in bipolar disorder: A review of the literature 
A sizable body of research has now examined the complex relationship between quality of life (QoL) and depressive disorder. Uptake of QoL research in relation to bipolar disorder (BD) has been comparatively slow, although increasing numbers of QoL studies are now being conducted in bipolar populations. We aimed to perform a review of studies addressing the assessment of generic and health-related QoL in patients with bipolar disorder.
A literature search was conducted in a comprehensive selection of databases including MEDLINE up to November 2004. Key words included: bipolar disorder or manic-depression, mania, bipolar depression, bipolar spectrum and variants AND quality of life, health-related QoL, functional status, well-being and variants. Articles were included if they were published in English and reported on an assessment of generic or health-related QoL in patients with BD. Articles were not included if they had assessed fewer than 10 patients with BD, were only published in abstract form or only assessed single dimensions of functioning.
The literature search initially yielded 790 articles or abstracts. Of these, 762 did not meet our inclusion criteria, leaving a final total of 28 articles. These were sub-divided into four categories (assessment of QoL in patients with BD at different stages of the disorder, comparisons of QoL in Patients with BD with that of other patient populations, QoL instrument evaluation in patients with BD and treatment studies using QoL instruments to assess outcome in Patients with BD) and described in detail.
The review indicated that there is growing interest in QoL research in bipolar populations. Although the scientific quality of the research identified was variable, increasing numbers of studies of good design are being conducted. The majority of the studies we identified indicated that QoL is markedly impaired in patients with BD, even when they are considered to be clinically euthymic. We identified several important avenues for future research, including a need for more assessment of QoL in hypo/manic patients, more longitudinal research and the development of a disease-specific measure of QoL for patients with BD.
PMCID: PMC1325049  PMID: 16288650
bipolar disorder; quality of life; literature review
16.  Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study 
Research interest in the quality of life (QOL) of persons with multiple sclerosis (MS) has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables.
Consecutive MS clinic attendees were assessed with the 26 – item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness.
The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P < 0.01), but higher QOL than the patients. When the scores were corrected for patients' depression and disability, caregivers had similar QOL with the general population group for four domains. Using corrected scores, MS caregivers had lower scores than diabetic and psychiatric caregivers in the physical, psychological and social relations domains. Majority expressed negative attitudes to MS. Caregiver QOL was more affected by their fear of having MS than their feelings about the illness and caregiving role. Caregiver attitudes had mostly no significant impact on their proxy ratings of patients' QOL. The significant predictor of caregivers' overall QOL was their impression of patients' QOL.
Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education. In particular, attention to patients' depression and disability could improve caregivers' QOL. Caregivers need specific programs to address fear of having MS, negative attitudes to illness and their unmet needs.
PMCID: PMC2576463  PMID: 18840287
17.  Profile of subjective quality of life and its correlates in a nation-wide sample of high school students in an Arab setting using the WHOQOL-Bref 
BMC Psychiatry  2011;11:71.
The upsurge of interest in the quality of life (QOL) of children is in line with the 1989 Convention on the Rights of the Child, which stressed the child's right to adequate circumstances for physical, mental, and social development. The study's objectives were to: (i) highlight how satisfied Kuwaiti high school students were with life circumstances as in the WHOQOL-Bref; (ii) assess the prevalence of at risk status for impaired QOL and establish the QOL domain normative values; and (iii) examine the relationship of QOL with personal, parental, and socio-environmental factors.
A nation-wide sample of students in senior classes in government high schools (N = 4467, 48.6% boys; aged 14-23 years) completed questionnaires that included the WHOQOL-Bref.
Using Cummins' norm of 70% - 80%, we found that, as a group, they barely achieved the well-being threshold score for physical health (70%), social relations (72.8%), environment (70.8%) and general facet (70.2%), but not for psychological health (61.9%). These scores were lower than those reported from other countries. Using the recommended cut-off of <1SD of population mean, the prevalence of at risk status for impaired QOL was 12.9% - 18.8% (population age-adjusted: 15.9% - 21.1%). In all domains, boys had significantly higher QOL than girls, mediated by anxiety/depression; while the younger ones had significantly higher QOL (p < 0.001), mediated by difficulty with studies and social relations. Although poorer QOL was significantly associated with parental divorce and father's low socio-economic status, the most important predictors of poorer QOL were perception of poor emotional relationship between the parents, poor self-esteem and difficulty with studies.
Poorer QOL seemed to reflect a circumstance of social disadvantage and poor psychosocial well-being in which girls fared worse than boys. The findings indicate that programs that address parental harmony and school programs that promote study-friendly atmospheres could help to improve psychosocial well-being. The application of QOL as a school population health measure may facilitate risk assessment and the tracking of health status.
PMCID: PMC3098152  PMID: 21518447
Quality of life; students; Arab; gender; age; parents
18.  Can the concepts of depression and quality of life be integrated using a time perspective? 
Little is understood about the conceptual relationship of depression and quality of life (QoL). Judgments concerning both, implicitly or explicitly, involve a time perspective. The aim of this study was to test de Leval's theoretical model linking depression and QoL with a time perspective. The model predicts that changes in cognitions about one's past, present and future QoL, will be associated with changes in depressive symptomatology.
Eighteen psychiatric in-patients with a clinically confirmed diagnosis of depression were assessed on commencing treatment and 12 weeks later. QoL was assessed by the Schedule for Evaluation of Individual Quality of Life (SEIQoL), depression by the Beck Depression Inventory (BDI-II) and hopelessness by the Beck Hopelessness Scale (BHS). Time perspective was incorporated by asking QoL questions about the past, present and future.
Depression and hopelessness were associated with a poorer present QoL. Depression lowered present QoL but did not alter future QoL, as these remained consistently high whether participants were depressed or recovering. However, depressed individuals had a larger gap between their actual present QoL and future (aspired to) QoL. Changes in QoL were influenced by depression and hopelessness. Contrary to the model, perception of "past" QoL was not affected by depression or hopelessness.
de Leval's model was largely confirmed. Thus depression and hopelessness influence a person's present and future QoL. The analysis of a temporal horizon was helpful in understanding the link between depression and QoL.
PMCID: PMC545054  PMID: 15634354
depression; quality of life; Schedule for the Evaluation of Individual Quality of Life; theory; time orientation
19.  Toxicities affecting Quality of Life After Chemo-IMRT of Oropharyngeal Cancer: Prospective Study of Patient-Reported, Observer-Rated, and Objective Outcomes 
After conventional radiotherapy for head and neck cancer, xerostomia has traditionally been the major effector of patient-reported quality of life (QOL), and recent publications suggest that dysphagia has an even stronger effect. We hypothesized that IMRT aiming to spare the salivary glands and swallowing structures reduced, or eliminated, the effects of these toxicities on QOL.
Methods and Materials
Prospective longitudinal study: 72 patients with Stage III-IV oropharyngeal cancer treated uniformly with definitive chemo-IMRT sparing the salivary glands and swallowing structures. Overall QOL was assessed by summary scores of the Head Neck QOL (HNQOL) and University of Washington QOL (UWQOL) questionnaires, as well as HNQOL “Overall Bother” question. QOL, observer-rated toxicities (CTCAE v2), and objective evaluations (videofluoroscopy assessing dysphagia and saliva flow rates assessing xerostomia) were recorded pre-therapy through 2 years post-therapy. Correlations between toxicities/objective evaluations and overall QOL were assessed using longitudinal repeated measures of analysis and Pearson correlations.
All observer-rated toxicities and QOL scores worsened 1-3 months after therapy and improved through 12 months, with minor further improvements through 24 months. At 12 months, dysphagia grades 0-1, 2, and 3, were observed in 95%, 4%, and 1% of patients, respectively. Using all post-therapy observations, observer-rated dysphagia was highly correlated with all overall QOL measures (p<0.0001), while xerostomia, mucosal, and voice toxicities were significantly correlated with some, but not all, overall QOL measures, with lower correlation coefficients than dysphagia. Late overall QOL (≥6 or ≥12 months post-therapy) was primarily associated with observer-rated dysphagia, and to a lesser extent with xerostomia. Videofluoroscopy scores, but not salivary flows, were significantly correlated with some of the overall QOL measures.
After chemo-IMRT, while late dysphagia was on average mild, it was still the major correlate of QOL. Further efforts to reduce swallowing dysfunction are likely to yield additional gains in QOL.
PMCID: PMC3556374  PMID: 23040224
quality of life; dysphagia; xerostomia; head neck cancer
20.  Relationship between quality of life and psychopathological profile: data from an observational study in children with ADHD 
European Child & Adolescent Psychiatry  2011;20(Suppl 2):267-275.
Although ADHD significantly affects the quality of life (QoL) of patients and their families, QoL in children with ADHD has rarely been investigated in association with psychopathological profile, and the relationship remains unclear. The open-label OBSEER study evaluated the effectiveness and tolerability of Equasym XL®, a modified-release methylphenidate, in routine care of children and adolescents (aged 6–17 years) with ADHD. At baseline, questionnaires assessing psychopathological profile (Strengths and Difficulties Questionnaire, SDQ; parental ratings) and QoL (KINDL; parent, child or adolescent versions) were completed; QoL was reassessed at final visit. We analysed the relationship between psychopathology and parent/patient-rated QoL in ADHD at baseline. Data from 721 consecutively referred children and adolescents were analysed. QoL was similarly low from parent and self-ratings and independent of severity on the SDQ subscale hyperactivity/inattention. Self-ratings indicated that additional conduct disorder was associated with further reduction in QoL. Similarly, children with high scores from parent and adolescent ratings on the SDQ subscale conduct problems had reduced QoL on some KINDL subscales. Adolescents with ADHD not receiving medication at baseline reported lower QoL than those already on medication. Results show that children and adolescents with ADHD have low QoL, independent of core symptom severity. Additional conduct problems may further impact QoL negatively, while ADHD medication use may show a trend towards improved QoL. Not all psychopathological problems associated with ADHD affect QoL similarly. As parents appear to have a less critical view of QoL compared with children’s self-ratings, both parent and child ratings should be included in clinical assessments.
PMCID: PMC3180591  PMID: 21901415
SDQ; Quality of life; KINDL questionnaire; Methylphenidate; ADHD
21.  Evaluation of the Irritable Bowel Syndrome Quality of Life (IBS-QOL) questionnaire in diarrheal-predominant irritable bowel syndrome patients 
Diarrhea-predominant irritable bowel syndrome (IBS-d) significantly diminishes the health-related quality of life (HRQOL) of patients. Psychological and social impacts are common with many IBS-d patients reporting comorbid depression, anxiety, decreased intimacy, and lost working days. The Irritable Bowel Syndrome Quality of Life (IBS-QOL) questionnaire is a 34-item instrument developed and validated for measurement of HRQOL in non-subtyped IBS patients. The current paper assesses this previously-validated instrument employing data collected from 754 patients who participated in a randomized clinical trial of a novel treatment, eluxadoline, for IBS-d.
Psychometric methods common to HRQOL research were employed to evaluate the IBS-QOL. Many of the historical analyses of the IBS-QOL validations were used. Other techniques that extended the original methods were applied where more appropriate for the current dataset. In IBS-d patients, we analyzed the items and substructure of the IBS-QOL via item reduction, factor structure, internal consistency, reproducibility, construct validity, and ability to detect change.
This study supports the IBS-QOL as a psychometrically valid measure. Factor analyses suggested that IBS-specific QOL as measured by the IBS-QOL is a unidimensional construct. Construct validity was further buttressed by significant correlations between IBS-QOL total scores and related measures of IBS-d severity including the historically-relevant Irritable Bowel Syndrome Adequate Relief (IBS-AR) item and the FDA’s Clinical Responder definition. The IBS-QOL also showed a significant ability to detect change as evidenced by analysis of treatment effects. A minority of the items, unrelated to the IBS-d, performed less well by the standards set by the original authors.
We established that the IBS-QOL total score is a psychometrically valid measure of HRQOL in IBS-d patients enrolled in this study. Our analyses suggest that the IBS-QOL items demonstrate very good construct validity and ability to detect changes due to treatment effects. Furthermore, our analyses suggest that the IBS-QOL items measure a univariate construct and we believe further modeling of the IBS-QOL from an item response theory (IRT) approach under both non-treatment and treatment conditions would greatly further our understanding as item-based methods could be used to develop a short form.
PMCID: PMC3895767  PMID: 24330412
IBS-QOL; Patient-reported Outcomes; Psychometrics; HRQOL; Irritable Bowel Syndrome; Diarrhea; Eluxadoline
22.  Co-morbidity and visual acuity are risk factors for health-related quality of life decline: five-month follow-up EQ-5D data of visually impaired older patients 
Co-morbidity is a common phenomenon in the elderly and is considered to be a major threat to quality of life (QOL). Knowledge of co-existing conditions or patient characteristics that lead to an increased QOL decline is important for individual care, and for public health purposes. In visually impaired older adults, it remains unclear which co-existing conditions or other characteristics influence their health-related QOL. Our aim was to present a risk profile of characteristics and conditions which predict deterioration of QOL in visually impaired older patients.
Analyses were performed on data from an observational study among 296 visually impaired older patients from four Dutch hospitals. QOL was measured with the EuroQol-5D (EQ-5D) at baseline and at five-month follow-up. Nine co-existing condition categories (musculoskeletal; diabetes; heart; hypertension; chronic obstructive pulmonary disease (COPD) or asthma; hearing impairment; stroke; cancer; gastrointestinal conditions) and six patient characteristics (age; gender; visual acuity; social status; independent living; rehabilitation type) were tested in a linear regression model to determine the risk profile. The model was corrected for baseline EQ-5D scores. In addition, baseline EQ-5D scores were compared with reference scores from a younger visually impaired population and from elderly in the general population.
From the 296 patients, 50 (16.9%) were lost to follow-up. Patients who reported diabetes, COPD or asthma, consequences of stroke, musculoskeletal conditions, cancer, gastrointestinal conditions or higher logMAR Visual Acuity values, experienced a lower QOL. After five months, visual acuity, musculoskeletal conditions, COPD/asthma and stroke predicted a decline in QOL (R2 = 0.20). At baseline, the visually impaired older patients more often reported moderate or severe problems on most EQ-5D dimensions than the two reference groups.
In visually impaired older patients, visual acuity, musculoskeletal conditions, COPD/asthma and stroke predicted a relatively rapid decline in health-related QOL. With this risk profile, a specific referral by the ophthalmologist to another sub-specialty may have a beneficial effect on the patient's health-related QOL. A referral by the ophthalmologist or optometrist to a multidisciplinary rehabilitation service seems appropriate for some patients with co-morbidity. The current results need to be confirmed in studies using pre-structured questionnaires to assess co-morbidity.
PMCID: PMC2654874  PMID: 19243624
23.  Schizophrenia: Impact on quality of life 
Indian Journal of Psychiatry  2008;50(3):181-186.
The purpose of the present study was to assess quality of life (QOL) in patients with schizophrenia and to determine influence of clinical factors and socio-demographic variables on QOL of schizophrenic patients.
Setting and Design:
Cross-sectional study carried out on outdoor patients attending Department of Psychiatry, SMS Medical College, Jaipur, India.
Materials and Methods:
Fifty patients of schizophrenia diagnosed as per ICD - 10 with minimum duration of illness being two years and attending out patient department (OPD) at psychiatric centre or psychiatric clinic at SMS medical college, hospital, Jaipur, India for maintenance treatment fulfilling the criteria given below were registered. They were evaluated using positive and negative syndrome scale (PANSS) and Quality of Life Instrument (WHO QOL - BREF). The data collected on above tools, was analyzed using descriptive and inferential statistics using Pearson correlation coefficient.
Results and Conclusions:
Patients were having lowest QOL scores in social relationships domain of WHO QOL - BREF scale. Social relationship domain of QOL was significantly negatively correlated with occupation with employed patients reporting better QOL in this domain. There were significant positive correlation of total monthly income with social relationship domain and total QOL. There were no statistically significant correlation between QOL parameters and clinical characteristics in schizophrenics. Scores on positive subscale and total PANSS were significantly negatively correlated with physical, Psychological, social relationship domains and total QOL. Negative subscale had significant negative correlation with physical and psychological domains and total QOL. General psychopathology subscale had significant negative correlation with all subscales of QOL. This study confirms poor QOL in schizophrenia despite significant improvement with pharmacological treatment.
PMCID: PMC2738356  PMID: 19742235
Quality of life; schizophrenia; positive and negative syndrome scale
24.  Illness Uncertainty and Quality of Life of Patients with Small Renal Tumors Undergoing Watchful Waiting: A 2-year Prospective Study 
European urology  2013;63(6):10.1016/j.eururo.2013.01.034.
Few studies have examined factors associated with the quality of life (QOL) of patients with renal tumors. Illness uncertainty may influence QOL.
To prospectively examine the influence of uncertainty on general and cancer-specific QOL and distress in patients undergoing watchful waiting (WW) for a renal mass.
Design, setting, and participants
In 2006–2010, 264 patients were enrolled in a prospective WW registry. The decision for WW was based on patient, tumor, and renal function characteristics at the discretion of the urologist and medical oncologist in the context of the physician–patient interaction. Participants had suspected clinical stage T1–T2 disease, were aged ≥18 yr, and spoke and read English. The first 100 patients enrolled in the registry participated in this study.
Outcome measurements and statistical analysis
Patients completed questionnaires on demographics, illness uncertainty (Mishel Uncertainty in Illness Scale), general QOL (Medical Outcomes Study 36-item short-form survey), cancer-specific QOL (Cancer Rehabilitation Evaluation System–Short Form), and distress (Impact of Events Scale) at enrollment and at 6, 12, and 24 mo. Age, gender, ethnicity, tumor size, estimated glomerular filtration rate, comorbidities, and assessment time point were controlled for in the models.
Results and limitations
Among the sample, 27 patients had biopsies, and 17 patients had proven renal cell carcinoma. Growth rate was an average of 0.02 cm/yr (standard deviation: 0.03). Mean age was 72.5 yr, 55% of the patients were male, and 84% of the patients were Caucasian. Greater illness uncertainty was associated with poorer general QOL scores in the physical domain (p = 0.008); worse cancer-related QOL in physical (p = 0.001), psychosocial (p < 0.001), and medical (p = 0.034) domains; and higher distress (p < 0.001).
This study is among the first to prospectively examine the QOL of patients with renal tumors undergoing WW and the psychosocial factors that influence QOL. Illness uncertainty predicted general QOL, cancer-specific QOL, and distress. These factors could be targeted in psychosocial interventions to improve the QOL of patients on WW.
PMCID: PMC3866912  PMID: 23419322
Kidney cancer; Renal cell carcinoma; Quality of life; Prospective study; Illness uncertainty
25.  Influence of Interferon beta treatment on quality of life in multiple sclerosis patients 
Interferon-beta (IFN-β) shows beneficial effect on the course of multiple sclerosis (MS), nevertheless its route and frequency of administration and side effects might impact negatively the quality of life (QoL) of MS patients. The objective of this study was to evaluate the influence of IFN-β on QoL in MS patients.
Seventy-seven disease modifying treatment (DMT) free and 41 IFN-β treated MS patients were evaluated. QoL, assessed by MSQoL-54, was related to IFN-β treatment and to clinical and demographic parameters at baseline and after two years. Multivariate hierarchical linear model for repeated measurements was used.
Treated patients showed a younger age, a lower disease duration and a higher relapse rate in the two years preceding study entry. At inclusion time treated and untreated patients did not differ in relapse rate, expanded disability status scale (EDSS), fatigue, depression, physical and mental QoL. IFN-β did not influence QoL at inclusion time, but when QoL was evaluated after two years, treatment negatively affected mental QoL. Depression and fatigue negatively influenced physical and mental QoL both at baseline and after two years. EDSS correlated with a poor physical QoL only at baseline.
IFN-β had a negative impact on QoL over the time in MS patients, influencing mainly mental QoL. The impairment of QoL in MS was strongly associated with increasing fatigue and depression, whereas clinical disability had a minor unfavourable role.
PMCID: PMC1716163  PMID: 17163989

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