Development and evaluation of oral Cancer quality-of-life questionnaire (QOL-OC).
Ontology highlight
ABSTRACT:
SUBMITTER: Nie M
PROVIDER: S-EPMC5934940 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackroundThe number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used.MethodsWe reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site-specific questionnaire modules were completed by a second group of 458 survivors.ResultsWe identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment.ConclusionsCompared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a core survivorship questionnaire and three site-specific modules for disease-free adult cancer survivors who are at least one year post-treatment.
| S-EPMC5987570 | biostudies-literature
Project description:BackgroundDiarrhea-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.MethodsPsychometric 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.ResultsThis 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.ConclusionsWe 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.
| S-EPMC3895767 | biostudies-literature
Project description:Given the growing number of cancer patients and the resulting increase in the administration of chemotherapeutic agents, convenient and effective methods for measuring the symptoms and quality of life associated with the hand-foot syndrome (HFS) are needed. Therefore, the aim of this study was to develop and validate the Korean version of the hand-foot skin reaction and quality of life questionnaire (HF-QoL-K), comprising a 20-item symptom domain and an 18-item daily activity domain. After we developed the HF-QoL-K, 209 Korean patients with gynecologic cancer who were undergoing chemotherapeutic agents relating the HFS were asked to fill in the questionnaire. The content validity, internal consistency reliability, and test-retest reliability were evaluated. The internal validity index, Cronbach's alpha coefficient, and intra-class correlation coefficient of the HF-QoL-K were 0.90, 0.958, and 0.825 (95% confidence interval [CI], 0.774-0.865), respectively. The scatter plot (Pearson correlation coefficient, 0.826) and the Bland-Altman plot for test-retest reliability were also acceptable. The HF-QoL-K instrument is a valid and reliable questionnaire for the measurement of the symptoms and quality of life in Korean cancer patients suffering HFS.
| S-EPMC5102862 | biostudies-literature
Project description:PurposeThe objective of this study was to validate the Korean version of the Quality of Life-Cancer Survivors (QOL-CS-K) in a sample of lymphoma survivors.Materials and methodsWe conducted a cross-sectional survey of lymphoma survivors who had survived for at least 24 months since diagnosis. Participants were recruited at the outpatient clinics and at a hospital event in a tertiary hospital in Seoul, Korea. Survivors were asked to complete the QOL-CS-K and the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30) questionnaires. To determine test-retest reliability, a second questionnaire was sent to participants who completed the first questionnaire adequately. Exploratory factor analysis and Pearson's correlations were used for evaluating reliability and validity of the QOL-CS-K.ResultsAmong 257 survivors, 245 (95.3%) completed all questionnaires and had no missing data. The mean age of study participants was 52.2 years, 54.9% were men, and the mean time since diagnosis was 4.0±1.6 years. The Cronbach's ? for the overall QOL-CS-K was 0.90, and the ? coefficients for each subscale ranged from 0.73 to 0.83. The test and retest reliability was 0.88. Moderate correlations were found between comparable subscales of the QOL-CS-K and subscales of the EORTC QLQ-C30 (r=0.51-0.55) except for the spiritual well-being subscale of the QOL-CS-K, which did not correlate with any of the EORTC QLQ-C30 subscales (-0.08 to 0.16).ConclusionThe QOL-CS-K is a reliable and valid scale for measuring the QOL in long-term lymphoma survivors.
| S-EPMC5784625 | biostudies-literature
Project description:ObjectivesThe objectives of this study were to develop a conceptual framework for the diabetes treatment-related quality of life (DTR-QOL) and validate the new structure of the DTR-QOL.MethodsThis study was conducted in two stages. First, items were collated into similar concepts to develop a new conceptual framework for the DTR-QOL. Next, psychometric analyses were conducted. Analyses included a distribution of responses (and domains) with a focus on floor/ceiling effects, item convergent/discriminant validity, internal consistency reliability (where possible), clinical validity, known-group analysis, and concurrent validity with the Diabetes Treatment Satisfaction Questionnaire and SF-8. Known groups were evaluated using "Glycemic control in the last month", "Concerned with weight gain in the last month", "Current health status", and "Degree of communication with clinician". To evaluate the reliability of each scale, test-retest were assessed.ResultsThe DTR-QOL items were reconstructed into seven domains based on similar concepts: usual activities, pain/discomfort, anxiety/depression, satisfaction, positive feelings, negative feelings, and feeling troubled. Although there were ceiling effects on most items, when patients reported having a hypoglycemic event in the last month, score distributions found fewer ceiling effects indicating that items are able to respond to clinical changes. Internal consistency reliability was met for all scales except satisfaction (??=?0.69) and pain/discomfort (??=?0.66). Clinical validity, known groups, and concurrent validity were met. Test-retest met acceptable levels for all scales except positive feelings.ConclusionsThe restructuring of the DTR-QOL resulted in an acceptable measure with domains that are easily interpreted and allow physicians to better measure more specific impacts on their patients.
| S-EPMC6506486 | biostudies-literature
Project description:The Prolapse Quality of Life Questionnaire (P-QoL) is a specific questionnaire created to assess the impact of pelvic organ prolapse on women's quality of life. The aim of the present study was to cross-culturally adapt and assess the psychometric properties of the P-QoL for Spanish women. The cross-cultural adaptation was conducted by a standardized translation/back-translation method. Psychometric analysis was performed by assessing the validity, reliability, responsiveness and feasibility. A total of 200 Spanish women were recruited and assigned to symptomatic and asymptomatic groups. The Spanish P-QoL version demonstrated good content validity. Convergent validity showed high intercorrelations with the Pelvic Floor Distress Inventory short form and the Pelvic Floor Impact Questionnaire short form. The discriminant validity showed statistically significant differences between the symptomatic and the asymptomatic groups. The internal consistency was high and of acceptable values. The test-retest reliability was shown to be high in all the cases. Regarding responsiveness, the effect size and standardized response mean demonstrated moderate values. The average time for administration was 10 (3) min. The Spanish P-QoL showed considerable support for the appropriate metric properties of validity, reliability, responsiveness and feasibility to evaluate the symptom severity and its impact on the quality of life in Spanish women with urogenital prolapse.
| S-EPMC7084358 | biostudies-literature
Project description:We aimed to develop a disease-specific adrenocortical carcinoma (ACC) health-related quality of life (HRQoL) questionnaire (ACC-QOL) and assess HRQoL in a population-based cohort of patients with ACC. Development was in line with European Organization for Research and Treatment of Cancer (EORTC) guidelines, though not an EORTC product. In phase I and II, we identified 90 potential HRQoL issues using literature and focus groups, which were reduced to 39 by healthcare professionals. Pilot testing resulted in 28 questions, to be used alongside the EORTC QLQ-C30. In Phase III, 100 patients with ACC were asked to complete the questionnaires twice in the PROFILES registry (3-month interval, respondents: first 67, second 51). Confirmatory factor analysis demonstrated the structural validity of 26 questions with their scale structure (mitotane side-effects, hypercortisolism/hydrocortisone effects, emotional effects). Internal consistency and reliability were good (Cronbach's alpha 0.897, Interclass correlation coefficient 0.860). Responsiveness analysis showed good discriminative ability (AUC 0.788). Patients diagnosed more than 5 years ago reported a good HRQoL compared with the Dutch reference population, but experienced residual fatigue and emotional problems. Patients who underwent recent treatment reported a lower HRQoL and problems in several domains. In conclusion, we developed an ACC-specific HRQoL questionnaire with good psychometric properties.
| S-EPMC8946128 | biostudies-literature
Project description:INTRODUCTION:Oropharyngeal dysphagia (OD) is a disorder that can have devastating and long lasting effects on a person's medical, mental and psychosocial well-being, thus negatively impacting quality of life. There is currently no validated dysphagia-specific quality of life instrument in Norway. This project aims to evaluate the psychometric properties of the culturally adapted Norwegian version of SWAL-QOL (Nor-SWAL-QOL). METHODS:The original SWAL-QOL was translated into Norwegian according the international translation guidelines. A group of 102 persons with OD and a group of 123 healthy controls were recruited to assess the validity and reliability of the Nor-SWAL-QOL. Correlation analysis of the Nor-SWAL-QOL and the Short Form 36 (SF-36) and correlation analysis of OD group and control group Nor-SWAL-QOL subscale scores were computed to determine convergent, discriminant, and known-groups validity which help comprise construct validity. Internal consistency, test-retest reliability and intraclass correlation coefficient (ICC) were computed for reliability. RESULTS:Convergent and discriminant validity was demonstrated between Nor-SWAL-QOL subscales and SF-36 domains, and distinguished between persons with and those without oropharyngeal dysphagia on all subscales and on the symptom frequency battery (p < 0.001). Additionally, the Nor-SWAL-QOL differentiated between symptom severity levels within the OD group; those requiring food and liquid modifications and those who are tube fed and not tube fed. Nor-SWAL-QOL showed good reliability with adequate internal consistency (Cronbach's α ≥0.70), test-retest reliability (Spearman's rho values 0.68-0.90) and ICC values (0.67-0.89) for all subscales and for the symptom frequency battery. CONCLUSION:Access to valid and reliable dysphagia-specific QoL outcome measures for health care practitioners, dysphagia clinicians and researchers is necessary for comprehensive assessment and treatment outcome measures. The Nor-SWAL-QOL exhibits sufficient psychometric properties for implementation in the Norwegian population.
| S-EPMC6896756 | biostudies-literature
Project description:ObjectiveUterine fibroids can cause a variety of symptoms in women, from heavy menstrual bleeding and dysmenorrhea to bulk symptoms. The Uterine Fibroid Symptom and health-related Quality Of Life questionnaire (UFS-QOL) is a patient-reported outcome measure developed for assessing fibroid-related symptoms in a standardised way. Our aim was to translate and validate the UFS-QOL in Dutch.DesignValidation study.SettingPatients were recruited by a gynaecologist at the outpatient clinic.ParticipantsWomen with uterine fibroids.MethodsThe UFS-QOL was translated into Dutch (UFS-QOL NL) and validated through testing construct validity (comprising of structural validity and hypotheses testing), reliability, responsiveness and interpretability, assessing floor and ceiling effects and minimal important change. An option to answer 'not applicable' was added to the translated questionnaire.Results191 women with uterine fibroids completed the UFS-QOL NL at baseline, after 2 weeks and after 3 months. The questionnaire retained the same factor structure after translation (Comparative Fit Index 0.94-0.95; Tucker-Lewis fit Index 0.93-0.95; Root Mean Square Error of Approximation 0.10-0.11) and correlations to other questionnaires (RAND 36, Hospital Anxiety and Depression Scale and Golombok Rust Inventory of Sexual Satisfaction) were generally moderate, as hypothesised (Pearson's r 0.3-0.7). We found a sufficient reliability with intraclass correlation coefficients of approximately 0.8-0.9 for all subscales. Responsiveness was sufficient when testing hypotheses comparing women who had surgery with those who did not. Cronbach's alpha was higher than 0.7 for all subscales, indicating sufficient internal consistency and there were no concerns about floor or ceiling effects. Minimal important change could not be calculated due to low correlation between the different subscales and the anchor question.ConclusionsThe results support the measurement properties of the Dutch UFS-QOL for assessing fibroid-related symptoms and health-related quality of life in Dutch women with uterine fibroids.
| S-EPMC8611425 | biostudies-literature
Project description:BackgroundPatients with primary ciliary dyskinesia (PCD) have chronic morbidities affecting their quality of life (QOL). Health-related QOL (HRQOL) has been recognized as an important tool for assessing the burden of PCD on patients and their families. A PCD-specific HRQOL questionnaire (QOL-PCD) was developed and validated for the English-speaking populations. Still, it has not yet been translated into Hebrew or adapted for Israeli PCD patients.MethodsThis describes our translation of the original English version of QOL-PCD into a Hebrew version. The process involved forward translation by independent translators, construction of a consensus version, back-translation into the original English version, analysis by the expert committee, and a pretest. The pretest was administered to 20 participants with PCD (the patients and the parents of minor patients) to assess the feasibility and practicality of the tool. Scale and item indices (scale-level content validity index [S-CVI] and item-level content validity index [I-CVI]) were calculated for content validity.ResultsAll study participants understood the final Hebrew version that the expert committee had approved with no difficulty. The instrument had satisfactory (>0.80) content validity, with S-CVI indexes of 0.99 for the adult version, 0.86 for the parental version, 0.95 for the adolescent version, and 1.00 for the child version.ConclusionThe English version of a QOL-PCD was translated into Hebrew and adapted in Israel. This translation is a valid instrument to assess HRQOL in Hebrew-speaking patients with PCD and their family members. It may be helpful for PCD patient management and research in Israel.
| S-EPMC9314800 | biostudies-literature