PedsQL Neurofibromatosis Type 1 Module for children,adolescents and young adults: feasibility,reliability, and validity

The objective of the present study was to report on the measurement properties of the Pediatric Quality of Life Inventory (PedsQL) Neurofibromatosis Type 1 Module for pediatric patients ages 5–25 from the perspectives of patients and parents. The 104-item PedsQL NF1 Module and 23-item PedsQL Generic Core Scales were completed in a multi-site national study by 323 patients and 335 parents (343 families). Patients were diagnosed with NF1 using the National Institutes of Health diagnostic criteria. In addition to a Total Scale Score, 18 unidimensional scales were derived measuring skin itch bother, skin sensations, pain, pain impact, pain management, cognitive functioning, speech, fine motor, balance, vision, perceived physical appearance, communication, worry, treatment anxiety, medicines, stomach discomfort, constipation, and diarrhea. The PedsQL NF1 Module Scales evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α?=?0.98; parent proxy-report α?=?0.98), and good to excellent reliability for the 18 individual scales (patient self-report α?=?0.71–0.96; parent proxy-report α?=?0.73–0.98). Intercorrelations with the Generic Core Scales supported construct validity. Factor analysis supported the unidimensionality of the 18 individual scales. The PedsQL NF1 Module Scales demonstrated acceptable to excellent measurement properties, and may be utilized as standardized metrics to assess NF1-specific symptoms and problems in clinical research and practice in children, adolescents, and young adults.     

The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form.

PURPOSE: With improvement in survival after childhood cancer, increasing emphasis is being placed on the impact of treatment and its sequelae on the health-related quality of life (HRQL) of survivors. The Minneapolis-Manchester Quality of Life Instrument (MMQL) is a standardized patient self-report instrument designed to assess HRQL in survivors of childhood cancer. The MMQL is being developed for three age groups to address the changing developmental need of different ages: MMQL-Youth (8 to 12 years), MMQL-Adolescent (13 to 20 years), and MMQL-Young Adult (21 to 45 years). This report focuses on the development and testing of the MMQL-Adolescent Form. PATIENTS AND METHODS: To validate the instrument, the MMQL-Adolescent Form was administered to 397 adolescents (129 healthy individuals, 110 patients with cancer undergoing therapy, and 158 subjects off therapy for cancer). Factor analysis was conducted to refine the instrument. Construct validity was conducted by comparing similar constructs in the MMQL-Adolescent Form and the Child Health Questionnaire (CHQ). Discriminate validity was determined by comparing healthy children with children with cancer either on or off therapy. Stability of the MMQL was tested by readministering the MMQL-Adolescent Form 2 weeks later. RESULTS: Internal consistency reliability was in the acceptable range for this instrument. The MMQL was able to discriminate between the three study populations. There were high correlations between the MMQL scales and similar CHQ domains. Test-retest reliability of the MMQL-Adolescent Form demonstrated that the instrument was extremely stable in all scales tested. CONCLUSION: Overall, the data provide evidence for the validity and reliability of the MMQL-Adolescent Form as a comprehensive, multidimensional self-report instrument for measuring HRQL among adolescent survivors of childhood cancer.     

Assessing quality of life during chemotherapy for pleural mesothelioma: feasibility, validity, and results of using the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire and Lung Cancer Module.

PURPOSE: To assess the feasibility and validity of using the European Organization for Research and Treatment of Cancer (EORTC) Core Quality of Life Questionnaire (QLQ-C30) and Lung Cancer Module (QLQ-LC13) to describe health-related quality of life (HRQL) in patients with pleural mesothelioma undergoing combination chemotherapy, to identify the most impaired aspects of HRQL, and to assess the impact of chemotherapy on HRQL. PATIENTS AND METHODS: Fifty-three patients received cisplatin on day 1 and gemcitabine on days 1, 8, and 15 of a 28-day cycle for a maximum of six cycles. HRQL was assessed using the EORTC QLQ-C30 and QLQ-LC13. RESULTS: Compliance was 100% at baseline but subsequently decreased. At baseline, role function and social function were the most impaired domains, and the worst-rated symptoms were fatigue, dyspnea, pain, insomnia, appetite loss, and cough. Dyspnea, pain, insomnia, and cough improved with chemotherapy, although functional domains and chemotherapy-related symptoms deteriorated. Fatigue remained unchanged. Few patients reported hemoptysis. Functional domains and symptoms scales from the QLQ-C30 demonstrated predictive validity for survival. The predictive value of QLQ-LC13 pain scores was improved by combining three pain items into a single score. Dyspnea scores were correlated strongly with lung function as measured by forced vital capacity. CONCLUSION: This study supports the validity of the EORTC QLQ-C30 and LC13 as outcome measures for trials of chemotherapy in mesothelioma. Although the most prominent symptoms reported were concordant with clinical experience, impairments in role and social function and insomnia were worse than expected. Future research should focus on how best to apply, analyze, and interpret existing, validated HRQL instruments in mesothelioma research and practice, not on the development of new ones.     

The EORTC Core Quality of Life questionnaire (QLQ-C30): validity and reliability when analysed with patients treated with palliative radiotherapy

The EORTC Core Quality of Life questionnaire (EORTC QLQ-C30) is designed to measure cancer patients' physical, psychological and social functions. The questionnaire is composed of multi-item scales and single items. 247 patients completed the EORTC QLQ-C30 before palliative radiotherapy and 181 after palliative radiotherapy. The questionnaire was well accepted with a high completion rate in the present patient population consisting of advanced cancer patients with short life expectancy. In addition, the questionnaire was found to be useful to detect the effect of palliative radiotherapy over time. The scale reliability was excellent for all scales except the role functioning scale. Excellent criterion validity was found for the emotional functioning scale where it was correlated with GHQ-20. Performance of the questionnaire was improved after the second evaluation as compared with the first. The present study shows that the EORTC QLQ-C30 is found to be practical and valid in measuring quality of life in patients with advanced disease.     

Measuring Quality of Life of Long-Term Breast Cancer Survivors: The Long Term Quality of Life–Breast Cancer (LTQOL-BC) Scale

The authors developed a quality-of-life measure specific to long-term breast cancer survivors. Participants were women diagnosed with early-stage disease ≥7 years postdiagnosis. The final scale is the result of an iterative interview process with the 28-item scale administered to 285 participants. Factor analysis demonstrated with seven domains: physical, sexual and cognitive function, body image, coping, social support, and anxiety. Cronbach's alpha is .88. Convergent and divergent validity are also reported. The Long Term Quality of Life–Breast Cancer Scale has domains specific to breast cancer and will be useful to psychosocial and clinical researchers.     

Psychometric Validation of the Eortc Core Quality of Life Questionnaire, 30-Item Version and A Diagnosis-Specific Module for Head and Neck Cancer Patients

A cancer-specific self-reporting quality of life questionnaire has been validated. The questionnaire is designed to assess physical functioning, role functioning, cognitive functioning, emotional functioning, social functioning, pain, fatigue, emesis and quality of life by means of multi-item scales, and other disease- and treatment-related symptoms by means of single items. The questionnaire was completed by 126 head and neck cancer patients with a mean age of 67 years. The internal consistency (scale reliability) was satisfactory for all scales but one. Correlations between scales and items assessing the same underlying dimension were also satisfactory. The questionnaire discriminates between patient subgroups and between acute, subacute and late toxicity. Patient compliance was high. The questionnaire provided valuable information, and most of the scales/items functioned well. A few problems were found, especially with the modified visual analogue scales, and minor modifications will be made.     

The psychometric properties of the Swedish Multidimensional Fatigue Inventory MFI-20 in four different populations

The Multidimensional Fatigue Inventory (MFI-20) scale is widely used for measuring fatigue in cancer care. This questionnaire has been translated into Swedish and used in Swedish cancer populations, and the aim of this study was to test the validity and reliability of the Swedish version in four populations, with a total of 584 patients. The participants were classified into four groups: palliative cancer patients, cancer patients receiving radiation therapy, non-cancer outpatients, and a group of hospital staff. The MFI-20 consists of five subscales of fatigue: General Fatigue (GF), Physical Fatigue (PF), Reduced Motivation (RM), Reduced Activity (RA) and Mental Fatigue (MF). We have tested the convergent validity of the MFI-20 using the Category Ratio instrument (CR-10). The validity and the reliability of MFI-20 were acceptable. All subscales of the MFI-20 were correlated, and all were also correlated with the CR-10 score (p < or = 0.001). General Fatigue was highly correlated with Physical Fatigue for the three patient groups, but this was not the fact for healthy staff. Deleting some items increased Cronbach's alpha of the subscale to which these items belonged (where alpha measures the reliability of the results). The level of non-response was low (less than 1.2%) and there was no pattern to the items omitted. We conclude that the MFI-20 is a valid and reliable instrument for measuring fatigue in patients and in healthy individuals. The results support, to some extent, earlier findings and one item can be removed from the Swedish version of the MFI-20.     

Factor structure and concurrent validity of the Satisfaction with Life Domains Scale for Cancer (SLDS-C)

The Satisfaction with Life Domains Scale for Cancer (SLDS-C) is a brief self-report measure of quality of life that uses a familiar and easily understood graphic response format of smiling and frowning faces. This article explores the factor structure and further examines the validity of the SLDS-C compared with another cancer specific quality-of-life measure, the Functional Assessment of Cancer Therapy Scale-General (FACT-G), in a sample of patients with a variety of cancer diagnoses. A self-administered questionnaire containing the SLDS-C and the FACT-G was completed by 352 adult cancer survivors who were at various points post diagnosis. Three SLDS-C factor subscales were derived from analyses of these data: "Life as a Whole," "Daily Activities," and "Social Relationships." Evidence for the concurrent validity of the SLDS-C is presented, including its correlation with the total score of the FACT-G (r = .76) and its correlation with subscale scores of this widely used cancer quality-of-life measure. The SLDS-C has a high level of internal consistency (alpha = .94), and differences in SLDS-C total scores were found for time since diagnosis, number of diagnoses, spread of disease, type of cancer, and treatment status.     

Reliability and Validity of Turkish Versions of the Child,Parent and Staff Cancer Fatigue Scales

This study was designed to adapt the Turkish versions of scales to evaluate fatigue in children with cancerfrom the perspectives of the children, parents and staff. The objective of this study was to validate “Child FatigueScale-24 hours” (CFS-24 hours), “Parent Fatigue Scale-24 hours” (PFS-24 hours) and “Staff Fatigue Scale-24hours” (SFS-24 hours) for use in Turkish clinical research settings. Translation of the scales into Turkish andvalidity and reliability tests were performed. The validity of the translated scales was assessed with languagevalidity and content validity. The reliability of the translated scales was assessed with internal consistency. Thescales were evaluated by considering the following: calculation of the Cronbach alpha coefficient for parallel formreliability with 52 pediatric cancer patients, 86 parents and 43 nurses. The internal consistency was estimatedas 0.88 for the Child Fatigue Scale-24 hours, 0.77 for the Parent Fatigue Scale-24 hours, and 0.72 for the StaffFatigue Scale-24 hours (Cronbach’s α). The Turkish version of the Child Fatigue Scale -24 hours, the ParentFatigue Scale -24 hours and the Staff Fatigue Scale -24 hours were judged reliable and valid instruments toassess fatigue in children and showed good psychometric properties. These scales should assist in understandingto what extent initiatives can minimize or eliminate fatigue. Our scales are recommended for further studies anduse in pediatric oncology clinics as routine measurements and nursing initiatives should be planned accordingly.     

Reliability and Validity of Turkish Version of the Caregiver Quality of Life Index Cancer Scale

Background: Measuring effects of cancer on family caregivers is important to develop methods which canimprove their quality of life (QOL) . Nevertheless, up to now, only a few tools have been developed to be usedin this group. Among those, the Caregiver Quality of Life Index-Cancer Scale (CQOLC) has met minimumpsychometric criteria in different populations in spite of conflicting results. The present study was conducted toevaluate reliability and validity of CQOLC among Turkish cancer family caregivers. Materials and Methods:The CQOLC was administered to 120 caregivers, along with Beck Depression Inventory (BDI), MedicalOutcomes Study MOS 36- Item Short Form Health Survey (SF-36), State–Trait Anxiety Inventory (STAI), andMultidimensional Scale of Perceived Social Support (MSPSS). Internal consistency and test-retest stability wereused to investigate reliability. Construct validity was examined by using known group method, convergent, anddivergent validity. For the known group method, we hypothesized that CQOLC scores would differ betweendepressed and non-depressed subjects. We investigated convergent validity by correlating scores for CQOLCwith scores for other similar measures including SF-36 and STAI. The MSPSS was completed at the same timeas CQOLC to provide divergent validity. Results: The values for internal consistency and test-retest correlationwere 0.88 and 0.96, respectively. The CQOLC discriminated those who were depressed from those who werenot. Convergent validity supported strong correlations between CQOLC scores and two main component scores(PCS, MCS) in SF-36 although there was a weak correlation between CQOLC and STAI scores. Regardingdivergent validity, the correlation between CQOLC and MSPSS was in the low range, as expected. Conclusions:The Turkish CQOLC is a reliable and valid tool and it can be utilized to determine QOL of family caregivers.     

The rapid assessment of fatigue severity in cancer patients: use of the Brief Fatigue Inventory

BACKGROUND: Fatigue is a major disease and treatment burden for cancer patients. Several scales have been created to measure fatigue, but many are long and difficult for very ill patients to complete, or they are not easy to translate for non-English speaking patients. The Brief Fatigue Inventory was developed for the rapid assessment of fatigue severity for use in both clinical screening and clinical trials. METHODS: The study enrolled 305 consecutive, consenting adult inpatients and outpatients with cancer who could understand and complete the self-report measures used in the study. The same instruments also were administered to 290 community-dwelling adults to obtain a comparison sample. Research staff completed a form that indicated the primary site and stage of the cancer, rated the Eastern Cooperative Oncology Group performance status of the patient, described the characteristics of the pain, and described the current pain treatment being provided to the patients. RESULTS: The BFI was shown to be an internally stable (reliable) measure that tapped a single dimension, best interpreted as severity of fatigue. It correlated highly with similar fatigue measures. Greater than 98% of patients were able to complete it. A range of scores defining severe fatigue was identified. CONCLUSIONS: The BFI is a reliable instrument that allows for the rapid assessment of fatigue level in cancer patients and identifies those patients with severe fatigue.     

Quality of Life in Cancer: Definition, Purpose, and Method of Measurement

Over the past 20 years, changes within medicine and Society have encouraged an expansion in conceptualizing and evaluating the goals and important outcomes of medical treatments. In evaluating the care of people with cancer and other chronic illnesses, a major part of the expansion has been the inclusion of means to assess the quality of life in addition to the quantity of life associated with various treatments. This paper presents a review of the current literature on quality-of-life assessment in oncology research and practice. The review is organized around current thinking about the definition of quality of life, the purpose of quality-of-life measurement, the method of assessment, and the competing advantages and disadvantages of disease-specific versus general health outcome measurement. Recommendations for proceeding with quality-of-life measurement in oncology are provided to encourage increased attention to the need to remain closely tied to a theoretical construct.     

Quality of Life in Adult and Pediatric Patients with Tropomyosin Receptor Kinase Fusion Cancer Receiving Larotrectinib

Neurotrophic tyrosine receptor kinase (NTRK) gene fusions lead to chimeric tropomyosin receptor kinase (TRK) fusion proteins, which act as primary oncogenic drivers in diverse tumor types in adults and children. Larotrectinib, a highly selective and central nervous system-active TRK inhibitor, has shown high objective response rates, durable disease control, and a favorable safety profile in patients with TRK fusion cancer. The impact of larotrectinib on health-related quality of life (HRQoL) was evaluated in adult and pediatric patients in two phase I/II clinical trials (NAVIGATE; NCT02576431 and SCOUT; NCT02637687). Patients completed HRQoL questionnaires (EORTC QLQ-C30, EQ-5D-5L, and PedsQL) at baseline and at planned treatment cycle visits. Changes in questionnaire scores were evaluated over time, and by tumor type and treatment response. Questionnaires from 40 adult and 17 pediatric (2-19 years of age) patients receiving larotrectinib were completed at baseline and at least one post-baseline timepoint. Meaningful within-patient HRQoL improvements occurred at one or more timepoints in 60% of adults and 76% of pediatric patients. Sustained improvements in EORTC QLQ-C30 and PedsQL scores were rapid, occurring within 2 months of treatment initiation in 68% and 71% of patients, respectively. Improvements were observed regardless of tumor type and appeared to correlate with clinical efficacy. The rapid within-patient HRQoL improvements in adult and pediatric patients with TRK fusion cancer are consistent with the clinical profile of larotrectinib. Our results provide valuable information for use of this agent in this patient population. A plain language summary of this article is available in the supplementary appendix.     

Quality of life in lung cancer: the validity and cross-cultural applicability of the Functional Assessment Of Cancer Therapy-Lung scale

This article discusses quality of life in lung cancer: the validity and cross-cultural applicability of the Functional Assessment of Cancer Therapy-Lung scale.     

Effects of a 4-Week Multimodal Rehabilitation Program on Quality of Life,Cardiopulmonary Function,and Fatigue in Breast Cancer Patients

Purpose

This study examines the effects of a rehabilitation program on quality of life (QoL), cardiopulmonary function, and fatigue in breast cancer patients. The program included aerobic exercises as well as stretching and strengthening exercises.

Methods

Breast cancer patients (n=62) who had completed chemotherapy were randomly assigned to an early exercise group (EEG; n=32) or a delayed exercise group (DEG; n=30). The EEG underwent 4 weeks of a multimodal rehabilitation program for 80 min/day, 5 times/wk for 4 weeks. The DEG completed the same program during the next 4 weeks. The European Organization for Research and Treatment of Cancer-Core Quality of Life Questionnaire (EORTC QLQ-C30), EORTC Breast Cancer-Specific Quality of Life Questionnaire (EORTC QLQ-BR23), predicted maximal volume of oxygen consumption (VO₂max), and fatigue severity scale (FSS) were used for assessment at baseline, and at 2, 4, 6, and 8 weeks.

Results

After 8 weeks, statistically significant differences were apparent in global health, physical, role, and emotional functions, and cancer-related symptoms such as fatigue and pain, nausea, and dyspnea on the EORTC QLQ-C30; cancer-related symptoms involving the arm and breast on the EORTC QLQ-BR23; the predicted VO₂max; muscular strength; and FSS (p<0.050), according to time, between the two groups.

Conclusion

The results of our study suggest that a supervised multimodal rehabilitation program may improve the physical symptoms, QoL, and fatigue in patients with breast cancer.     

Effects of Exergaming in Cancer Related Fatigue in the Quality of Life and Electromyography of the Middle Deltoid of People with Cancer in Treatment: A Controlled Trial

Objective: In the present study, we aimed to evaluate the effects an exergaming protocol for cancer patients whoundergo or have already undergone cancer treatment. We sought to evaluate changes in cancer-related fatigue, function,and ability to perform daily activities, in addition to changes in the electromyographic pattern of the middle deltoidmuscle. Methods: We conducted a controlled trial. Nineteen volunteers in the cancer group (aged 61 ± 9 years; bodymass index28 ± 5) and 19 in the control group (aged 58 ± 8 years); body mass index 28 ± 4) participated in the study.They were evaluated by means of a sociodemographic and clinical questionnaire, the Functional Assessment of ChronicTherapy-Fatigue (FACIT-F) questionnaire, and surface electromyography in the deltoid muscle at three moments: beforethe beginning of the exergaming protocol, after 10 training sessions, and after 20 sessions. The protocol consisted ofpracticing exergaming using Xbox 360® (Microsoft, Redmond, USA) with Kinect®. The game “Your Shape FitnessEvolved” (Ubisoft, Rennes, France) was used. Results: Total FACIT-F scores, fatigue subscale scores, and medianfrequency values observed in the cancer group were lower than those in the control group. These values improved inrelation to the initial evaluation in the cancer group after the practice of the exergaming protocol. Conclusion: Theexergaming protocol used in this study was effective for reducing reported symptoms of fatigue, increasing perceivedquality of life, and improving the pattern of deltoid muscle contraction in cancer patients.     

The Effect of Adenotonsillectomy on Quality of Life in Adults and Pediatric Patients

The aim of this study was to evaluate the benefits, impact, and overall efficacy of tonsillectomy or adenotonsillectomy on quality of life in patients with recurrent, chronic tonsillitis or adenotonsillar hypertrophy before and after surgery in adults and children. A multi-center, observational, retrospective study of all adults and children who had undergone tonsillectomy in adults (14 years or older) and adenotonsillectomy in children for chronic, recurrent tonsillitis or adenotonsillar hypertrophy between September 2003–September 2008 in Ahwaz Imam and Apadana Hospitals. Patients were asked by questionnaire to compare their symptoms 6-months period before and after tonsillectomy or adenotonsillectomy. Outcome measures included the frequency of tonsillitis per year, days off work (or school), doctor visits and feelings of well-being. 812 adults and children were sent a questionnaire regarding their symptoms in the 6 months before and 6 months after surgery. A total of 812 patients (81 adults and 731 children) were enrolled in the study. The age of the patients ranged from 3 to 42 years. In adults group there were 34 men and 47 women. In child group there were 325 boys and 406 girls. The mean age of the children patients was 8.6 years and adults 26.5 years. The mean duration of symptoms was 3.6 years. The mean frequency of tonsillitis per year, days off work (or school), doctor visits decreased postoperatively. We concluded that tonsillectomy in adult and adenotonsillectomy in children is benefit for patients with adenotonsillar hypertrophy and/or recurrent, chronic tonsillitis and results in significant improvement in overall quality of life, physical health and general well-being.