Cancer-specific Quality Of Life Questionnaire Research Articles

Validity and reliability of the European Organization for Research and Treatment in Cancer Quality of Life Questionnaire (EORTC QLQ): experience from Kuwait using a sample of women with breast cancer

BACKGROUND AND OBJECTIVES:Although the EORTC QLQ-C30 and its breast-specific module (BR-23) are widely used instruments, the few reports on their psychometric characteristics from Arab and neighboring countries involved limited analyses. Our objective was to assess the psychometric characteristics of both questionnaires using the responses of a larger sample of Arab women.METHODS:Participants were consecutive clinic attendees at the Kuwait Cancer Control Center. The indices assessed were alpha coefficients, item-internal consistency (IIC), item-discriminant validity (IDV), and known-groups validity.RESULTS:The 348 women were aged 48.3 (10.3) years. The intra-class correlation for the test-retest statistic and the internal consistency values for the multi-item scales were >0.7 alpha. With the exception of the pain subscale, all items met the IIC criterion of >0.4 correlation with the corresponding scale. For IDV, the BR-23 performed better than the QLQ-C30. The scale scores discriminated between patients at different disease stages, and between sick and well populations.CONCLUSION:With the exception of the pain subscale, the Arabic version of the questionnaires is psychometrically sound.

Is sphincter preservation reasonable in all patients with rectal cancer?

Modern sphincter-preserving surgery for ultralow rectal carcinoma has a comparable oncological radicality to abdomino-perineal extirpation (APE). The aim of this study was to assess the long-term morbidity of ultralow anterior resection (ULAR) and its impact on quality of life (QoL) METHODS: The medical records of 142 consecutive patients who underwent surgery for ultralow rectal carcinoma from January 1991 to December 2004 were reviewed retrospectively. The rate of rehospitalisation and rate of non-reversed temporary stomas ("failure" stoma) were analysed. Generic and cancer-specific quality of life questionnaires were used to assess quality of life. There were a total of 82 ULAR and 60 APE. After ULAR, 25 (30.5%) of the patients were readmitted, stenosis and anastomotic leakage being the main reasons. After APE, only 2 (3.3%) of the patients were readmitted (P < 0.001). The rate of patients with a permanent stoma after sphincter-saving surgery was 22.0%. The failure rate was higher for older patients (P = 0.005) and for coloanal pull-through anastomosis (P = 0.001). The exploratory analysis revealed a negative impact of a "failure" stoma on QoL. Severe long-term morbidity and high failure rate of stoma reversal have a significantly worse impact on QoL after ULAR; therefore, APE is a valid alternative to ULAR, especially in elder patients with planned coloanal pull-through anastomosis.

Preliminary Validation of an Optimally Weighted Patient-Based Utility Index by Application to Randomized Trials in Breast Cancer

To optimize, apply, and validate a scoring algorithm that provides a utility index from a cancer-specific quality of life questionnaire called the Utility-Based Questionnaire-Cancer (UBQ-C) using data sets from randomized trials in breast cancer. The index is designed to reflect the perspective of cancer patients in a specific clinical context so as to best inform clinical decisions. We applied the UBQ-C scoring algorithm to trials of chemotherapy for advanced (n = 325) and early (n = 126) breast cancer. The algorithm converts UBQ-C subscales into a subset index, and combines it with a global health status item into an overall HRQL index, which is then converted to a utility index using a power transformation. The optimal subscale weights were determined by their correlations with the global scale in the relevant data set. The validity of the utility index was tested against other patient characteristics. Optimal weights (range 0-1) for the subset index in advanced (early) breast cancer were: physical function 0.20 (0.09); social/usual activities 0.23 (0.25); self-care 0.04 (0.01); and distresses 0.53 (0.64). Weights for the overall HRQL index were health status 0.66 (0.63) and subset index 0.34 (0.37). The utility index discriminated between breast cancer that was advanced rather than early (means 0.88 vs. 0.94, P < 0.0001) and was responsive to the toxic effects of chemotherapy in early breast cancer (mean change 0.07, P < 0.0001). The scoring algorithm for the UBQ-C utility index can be optimized in different clinical contexts to reflect the relative importance of different aspects of quality of life to the patients in a trial. It can be used to generate sensitive and responsive utility scores, and quality-adjusted life-years that can be used within a trial to compare the net benefit of treatments and inform clinical decision-making.

Deriving a Patient-Based Utility Index from a Cancer-Specific Quality of Life Questionnaire

Objectives The aim of this study was to derive a scoring algorithm for a validated disease-specific quality of life instrument called the Utility-Based Questionnaire-Cancer (UBQ-C) that provided a utility index designed to inform clinical decisions about cancer treatments. Methods The UBQ-C includes a scale for global health status (1 item); and subscales for physical function (3 items), social/usual activities (4 items), self-care (1 item), and distresses because of physical and psychological symptoms (21 items). A scoring algorithm was derived to convert the subscales into a subset index, and combine it with the global scale into an overall health-related quality of life (HRQL) index, which was converted to a utility index with a power transformation. The valuation survey consisted of 204 advanced cancer patients who completed the UBQ-C and assigned time trade-off (TTO) utilities about their own health state. Preliminary validation involved comparing these derived utilities with other measures of HRQL. Results Weights for the subset index were: physical function 0.28, social/usual activities 0.06, self-care 0.01, and distresses 0.64. Weights for the overall HRQL index were health status 0.65 and subset index 0.35. The mean of the utility index scores was similar to the mean of the TTO utilities (0.92 vs. 0.91, P = 0.6). The utility index was substantially correlated with other measures of HRQL. Conclusions Data from a simple, self-rated, disease-specific questionnaire can be converted into a utility index suitable for comparing the net effect of cancer treatments on quality of life, and to evaluate trade-offs between quality and quantity of life in quality-adjusted survival analyses.

Validation of the Japanese version of EORTC QLQ-CR38

The objective of this study was to test the reliability and validity of the Japanese version of the European Organization for Research and Treatment of Cancer (EORTC) Colorectal Cancer-Specific Quality of Life Questionnaire (QLQ-CR38). The questionnaire was tested among 109 colorectal cancer patients on several occasions. The timing was prior to treatment with radiotherapy or chemotherapy, during treatment and 3 months following the second assessment. For purpose of test-retest reliability, a subgroup of patients completed the QLQ-CR38 1 week following the third assessment. Multitrait scaling analysis confirmed the hypothesised scale structure of both the function scales and the symptom scales except female sexual problem scale. Cronbach's alpha coefficients for seven of the nine scales exceeded the 0.7 criterion at one or both assessments. The test-retest reliability for all scales except three symptom scales was 0.67 or higher. On the basis of known-groups comparisons, four of 46 comparisons distinguished between patients differing in disease stage, initial and on-treatment performance status and presence or absence of a stoma. Additionally, these scales detected change over time as a function of change in performance status and treatment-induced change. These preliminary results suggest that the Japanese EORTC QLQ-CR38 may be a reliable and valid supplementary measure of quality of life in colorectal cancer patients.

Symptom Experience and Quality of Life of Women Following Breast Cancer Treatment

Few studies have examined the correlates of breast cancer-related symptoms that persist posttreatment and determined the relationship between symptoms and quality of life (QOL). A population-based sample of women in the United States with stage 0-II breast cancer (n = 1372) completed a survey including the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and the Breast Cancer-Specific Quality of Life Questionnaire. Described are the presence and frequency of 13 symptom scales and their associations with 10 QOL dimensions. All study participants had completed primary treatment (surgery and radiation and/or chemotherapy, if applicable). Mean time from initial surgical treatment to completion of the questionnaire was 7.2 months (range 0.5-14.9 months). Mean number of symptoms reported was 6.8, with the 5 most common symptom scales being systemic therapy side effects (87.7%), fatigue (81.7%), breast symptoms (72.1%), sleep disturbance (57.1%), and arm symptoms (55.6%). Younger age and poorer health status at diagnosis were associated with worse symptoms. Fatigue had the greatest impact on QOL, with significant differences between those with high and low fatigue across 7 QOL dimensions. Sociodemographic, prior health status, clinical, and treatment/diagnostic factors explained only 9%-27% of the variance in QOL outcomes. Adding symptom experience increased the variance explained to 18%-60%. More attention to the reduction and management of disease and treatment-related symptoms could improve QOL among women with breast cancer.

Evaluation of quality of life questionnaire in patients with colorectal cancer

Background: The quality of life (QoL) of colorectal cancer patients has growing importance. The aim of the current study was to construct a colorectal cancer specific QoL questionnaire (CRC_QoL) and to test its reliability and validity.

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

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

Timing of quality of life assessment in cancer clinical trials: fine tuning remains a challenge

Timing of quality of life assessment in cancer clinical trials: fine tuning remains a challenge

Health-Related Quality-of-Life Following Modified Ureterosigmoidostomy (Mainz Pouch II) as Continent Urinary Diversion

The purpose of this study was to estimate the health-related quality of life (HRQoL) following modified ureterosigmoidostomy (Mainz Pouch II) urinary diversion. Between March 1995 and February 2003 the procedure was performed in 83 patients (67 male and 16 female, median age 62 years, range 2-78 years) at the Departments of Urology in Bonn, Germany, and Pesaro, Italy. Patients were asked during follow-up to complete a validated, cancer-specific quality of life questionnaire, namely the EORTC QLQ C-30 Version 3. Forty-one patients (29 male, 12 female) completed the QLQ C-30. Twenty-eight patients were dead at the time of the study and 14 patients were lost to follow-up. A non-validated questionnaire was answered by 31 patients (75%) of the Bonn series to determine specific urinary diversion items. Mean follow-up time was 24.4 months (6 to 84 months). No statistically significant differences (p < 0.05) in functional and symptom scales or global health status were detected between males and females. All scales but diarrhea showed good results and the outcome was comparable to health-related quality of life in a reference population of Germany. Continence rate was 100% at daytime; all but one patient had to get up for urination at night. About one third of the patients have to urinate more than six times during the day and more than three times during the night. Sixty-three percent of the patients in the Bonn series were able to distinguish between stool and urine. The Mainz Pouch II serves as a satisfying continent urinary diversion for both sexes in selected patients in terms of quality of life. Patients seem to adapt to their "individual" form of urinary diversion. In terms of continence modified ureterosigmoidostomy can lead to daytime continence rate of 100%. The relatively high voiding frequency during night-time was not felt to be disturbing by the patients and demonstrates the adaptability of the patients.

French version of FACT-G: validation and comparison with other cancer-specific instruments

The aim of this study was to assess the validity of the French version of the Functional Assessment of Cancer Therapy – General (FACT-G), and to compare its psychometric properties with those of two other cancer-specific quality of life questionnaires, European Organisation for Research and Treatment of Cancer Quality of Life – Core 30 (EORTC QLQ-C30) and Functional Living Index – Cancer (FLIC). Two hundred and twenty three patients with breast or colorectal cancer completed the FACT-G questionnaire in French followed by (in random order) the QLQ-C30 and FLIC. An additional 87 patients with head and neck (H&N) cancer completed the FACT-H&N followed by the QLQ-C30 and H&N-Besançon. The French version of FACT-G was internally consistent, and its reproducibility was excellent. FACT-G Physical Well-Being and global scores correlated with all QLQ-C30 subscales. There was evidence of discriminant validity. Compared with the other tools, FACT-G included a statistically significantly higher proportion of items patients considered to be confusing or upsetting. Patients with breast or colorectal cancer expressed a preference for QLQ-C30. Use of the specific H&N additional items increased the responsiveness to change of FACT-G. The French version of FACT-G is valid and has psychometric properties similar to those of FLIC and QLQ-C30.

Quality of life in long term survivors of colorectal cancer

OBJECTIVES: We aimed to determine the quality of life (QOL) for long term survivors of colorectal cancer. METHODS: Persons with colorectal cancer who had survived at least 5 yr from diagnosis were recruited from a local cancer registry to answer questions about general QOL and colon cancer-specific issues. Before the general survey, focus group interviews with long term survivors were conducted to select survey questions from a pool of general and cancer-specific QOL questionnaires. The survey included the Health Utilities Index, the Center for Epidemiological Studies Depression Scale, and questions from the Short Form 36 and Functional Assessment of Cancer Therapy-Colorectal Cancer. After permission was obtained from their primary physicians, long term survivors from the registry were mailed invitation letters, then telephoned. Those agreeing were mailed self-administered questionnaires with stamped return envelopes. RESULTS: Two hundred twenty-seven respondents (average age = 74 yr, 46% female) completed the survey. Survivors reported a relatively uniform and high QOL, irrespective of stage at diagnosis and time from diagnosis. Non-cancer related comorbid conditions and low income status had more influence on overall QOL than initial stage of colorectal cancer or time since diagnosis. Compared to age-matched populations, long term survivors reported higher overall QOL, but had higher rates of depression. Sixteen percent reported three or more bowel movements a day; 49% reported chronic recurrent diarrhea. CONCLUSIONS: Those who achieve long term remission from colorectal cancer may experience a relatively high QOL, although physical symptoms such as diarrhea and depressive symptoms remain a problem.

Quality of life in long term survivors of colorectal cancer.

We aimed to determine the quality of life (QOL) for long term survivors of colorectal cancer. Persons with colorectal cancer who had survived at least 5 yr from diagnosis were recruited from a local cancer registry to answer questions about general QOL and colon cancer-specific issues. Before the general survey, focus group interviews with long term survivors were conducted to select survey questions from a pool of general and cancer-specific QOL questionnaires. The survey included the Health Utilities Index, the Center for Epidemiological Studies Depression Scale, and questions from the Short Form 36 and Functional Assessment of Cancer Therapy-Colorectal Cancer. After permission was obtained from their primary physicians, long term survivors from the registry were mailed invitation letters, then telephoned. Those agreeing were mailed self-administered questionnaires with stamped return envelopes. Two hundred twenty-seven respondents (average age = 74 yr, 46% female) completed the survey. Survivors reported a relatively uniform and high QOL, irrespective of stage at diagnosis and time from diagnosis. Non-cancer related comorbid conditions and low income status had more influence on overall QOL than initial stage of colorectal cancer or time since diagnosis. Compared to age-matched populations, long term survivors reported higher overall QOL, but had higher rates of depression. Sixteen percent reported three or more bowel movements a day; 49% reported chronic recurrent diarrhea. Those who achieve long term remission from colorectal cancer may experience a relatively high QOL, although physical symptoms such as diarrhea and depressive symptoms remain a problem.

The EORTC breast cancer-specific quality of life questionnaire (EORTC QLQ-BR23): translation and validation study of the Iranian version.

The objective of this study was to test the reliability and validity of the Iranian version of the European Organization for Research and Treatment of Cancer (EORTC) Breast Cancer-Specific Quality of Life Questionnaire (QLQ-BR23). The English-language version of the questionnaire was translated into Persian (Iranian language) and its final form was approved by the EORTC Study Group on Quality of Life and then it was used in this study. The questionnaire was administered at two points in time to a consecutive sample of 168 newly diagnosed breast cancer patients and almost all of them (99%) found the questions easy to understand and acceptable. Cronbach's alpha coefficient for multi-item scales (to test reliability) ranged from 0.63 to 0.95 at baseline and from 0.75 to 0.92 at follow-up administration of the questionnaire. Validity analysis was performed using known-groups' comparison analysis. The results showed that all functional and symptom scales discriminated between sub-groups of patients differing in clinical status as defined by their performance status and disease stage. In addition, all functional and symptoms scales detected change over time, as a function of changes in patients' performance status. In general, the findings of this study indicated that the Iranian version of the EORTC QLQ-BR23 is a reliable and valid supplementary measure of the quality of life in breast cancer patients and can be used in clinical trials and studies of outcome research in oncology.

The cognitive-spiritual dimension – an important addition to the assessment of quality of life: Validation of a questionnaire (SELT-M) in patients with advanced cancer

Questions of meaning and challenge by illness, i.e., the spiritual dimension of quality of life (QL) traditionally played an important role in anthroposophically oriented medicine and have gained importance in palliative medicine and supportive care. In the context of a research project on QL in patients with advanced cancer, we therefore investigated the psychometric properties of a questionnaire covering spiritual QL issues, with the aim of providing a module for the assessment of cognitive-spiritual QL. We investigated 89 patients with advanced breast and gastro-intestinal cancer. Construct validity of a modified version of the SELT (Skalen zur Erfassung von Lebensqualität bei Tumorkranken), the SELT-M was tested by multitrait scaling analysis. Discriminant and convergent validity were also tested. The EORTC QLQ-C30 was used as a standard for validation. Results showed the SELT-M as feasible in administration. Four of the five SELT-M subscales were internally consistent (Cronbach's Alpha = > 0.7). The subscale on spiritual QL showed higher within than outside subscale correlations for six of its eight items. Association of the SELT-M with the EORTC QLQ-C30 was good for the items and subscales covering the same aspects of QL in both questionnaires: emotional (Spearman r = 0.61), physical functioning (r = -0.54) and fatigue (r = -0.75). In accordance with expectations, there was no association between spiritual QL with any EORTC QLQ-C30 subscales. Self-assessed spiritual QL in the SELT-M corresponded well with interviewer assessments (test for trend accross ordered groups, P = 0.0023). Overall there is confirming evidence for the hypothesised structure of the SELT-M, especially for the newly developed module on spiritual QL. This module may be used as a module together with other cancer specific QL questionnaires.

Cancer-specific quality of life questionnaires: The state of the art in Europe

Quality of life (QL) assessment is now regarded as desirable, if not mandatory, by agencies supporting cancer clinical trials around the world, yet doubts persist about the relevance of QL data to clinical practice. A plethora of QL measures is available but the quality of published work remains suboptimal. The appropriate choice of instrument is essential if outcome measures are to be valid and clinically meaningful. This paper reviews the considerations which should determine the choice of QL questionnaire and, taking the specific example of the EORTC approach, aims to provide users with an update on the current state of the art in the development of cancer-specific QL questionnaires.