Free Open Source REDCap Software to Track EORTC QLQ-30 and H&N-35 Quality of Life Scores and Allow Real-Time Clinical Management of Individual Patients

Gliomas make up about 8 cases per 100,000 population and the number of patients with this disease is only increasing. There can be not only various types of neurological deficits among the symptoms, but also personal and emotional changes, that seriously affects the quality of life. The modern model of health care includes not only recovery of the patient’s physical functions, but also his or her psychosocial well-being. In particular, the assessment and study of the characteristics of health-related quality of life, as well as cognitive functions in patients with gliomas, is increasingly recognized as an important criterion when considering the effectiveness of treatment. To date, the features of health related quality of life and cognitive functions of patients with epilepsy and acute cerebral circulation disorders have been studied sufficiently, and, as a result, techniques have been developed that accurately assess the QOL and CF in patients with these diseases. These are QOLIE-31 and QOLIE-AD-48 questionnaires for patients with epilepsy. This is the National Institutes of Health Stroke Scale (NIHSS), Orgogozo stroke scale (OSS), World Federation of Neurological Surgeons (WFNS) scale for the clinical assessment of subarachnoid hemorrhage (SAH) for patients with acute cerebrovascular accident. At the same time, there are no generally accepted methods for assessing quality of life and neurocognitive functions that are sensitive to changes in the condition of patients with gliomas in the early postoperative period by the time of discharge from the hospital. As a result, there is no systematic information on the dynamics of the quality of life of such patients, their neurocognitive functioning. The purpose of this article was to study the literature on QOL and CF in patients affected by neurological and neurosurgical disorders for the further selection of optimal methods for assessing dynamics of the condition of patients with glial brain tumors before and after surgery. At the moment, such requirements are only partially met by the EORTC QLQ-C30 questionnaire and its application EORTC QLQ-BN20.

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Psychometric validation of the Moroccan version of the EORTC QLQ-C30 in colorectal Cancer patients: cross-sectional study and systematic literature review

BMC Cancer ◽

10.1186/s12885-021-07793-w ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Yacir El Alami ◽

Hajar Essangri ◽

Mohammed Anass Majbar ◽

Saber Boutayeb ◽

Said Benamr ◽

...

Keyword(s):

Quality Of Life ◽

Colorectal Cancer ◽

Discriminant Validity ◽

Cross Sectional Study ◽

Cross Sectional ◽

Related Quality ◽

Eortc Qlq C30 ◽

Eortc Qlq ◽

Colorectal Cancer Patients

Abstract Background Health-related quality of life is mainly impacted by colorectal cancer which justified the major importance addressed to the development and validation of assessment questionnaires. We aimed to assess the validity and reliability of the Moroccan Arabic Dialectal version of the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Core Questionnaire (QLQ-C30) in patients with colorectal cancer. Methods We conducted a cross-sectional study using the Moroccan version of the EORTC QLQ-C30 on colorectal cancer patients from the National Oncology Institute of Rabat, in the period from February 2015 to June 2017. The QLQ-C30 was administered to 120 patients. Statistical analysis included reliability, convergent, and discriminant validity as well as known-groups comparisons. Results In total, 120 patients with colorectal cancer were included in the study with 38 (32%) patients diagnosed with colon cancers. Eighty-two patients (68%) had rectal cancer, among which 29 (24%) patients with a stoma. The mean age of diagnosis was 54 years (+/− 13.3). The reliability and validity of the Arabic dialectal Moroccan version of the EORTC QLQ-C30 were satisfactory. [Cronbach’s alpha (α =0.74)]. All items accomplished the criteria for convergent and discriminant validity except for question number 5, which did not complete the minimum required correlation with its own scale (physical functioning). Patients with rectal cancer presented with bad Global health status and quality of life (GHS/QOL), emotional functioning as well as higher fatigue symptoms compared to patients with colon cancer. The difference between patients with and without stoma was significant for diarrhea and financial difficulty. Conclusions The Moroccan Arabic Dialectal version of the QLQ-C30 is a valid and reliable measure of health-related quality of life (HRQOL) in patients with colorectal cancer.

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Impact of individualized management of breakthrough cancer pain on quality of life in advanced cancer patients: CAVIDIOPAL study

Supportive Care in Cancer ◽

10.1007/s00520-021-06006-1 ◽

2021 ◽

Author(s):

Albert Tuca Rodríguez ◽

Miguel Núñez Viejo ◽

Pablo Maradey ◽

Jaume Canal-Sotelo ◽

Plácido Guardia Mancilla ◽

...

Keyword(s):

Quality Of Life ◽

Cancer Pain ◽

Advanced Cancer ◽

Low Doses ◽

Breakthrough Cancer Pain ◽

Eortc Qlq C30 ◽

Eortc Qlq ◽

Individualized Management ◽

The Impact

Abstract Purpose The main aim of the study was to assess the impact of individualized management of breakthrough cancer pain (BTcP) on quality of life (QoL) of patients with advanced cancer in clinical practice. Methods A prospective, observational, multicenter study was conducted in patients with advanced cancer that were assisted by palliative care units. QoL was assessed with the EORTC QLQ-C30 questionnaire at baseline (V0) and after 28 days (V28) of individualized BTcP therapy. Data on background pain, BTcP, comorbidities, and frailty were also recorded. Results Ninety-three patients completed the study. Intensity, duration, and number of BTcP episodes were reduced (p < 0.001) at V28 with individualized therapy. Transmucosal fentanyl was used in 93.8% of patients, mainly by sublingual route. Fentanyl titration was initiated at low doses (78.3% of patients received doses of 67 μg, 100 μg, or 133 μg) according to physician evaluation. At V28, mean perception of global health status had increased from 31.1 to 53.1 (p < 0.001). All scales of EORTC QLQ-C30 significantly improved (p < 0.001) except physical functioning, diarrhea, and financial difficulties. Pain scale improved from 73.6 ± 22.6 to 35.7 ± 22.3 (p < 0.001). Moreover, 85.9% of patients reported pain improvement. Probability of no ≥ 25% improvement in QoL was significantly higher in patients ≥ 65 years old (OR 1.39; 95% CI 1.001–1.079) and patients hospitalized at baseline (OR 4.126; 95% CI 1.227–13.873). Conclusion Individualized BTcP therapy improved QoL of patients with advanced cancer. Transmucosal fentanyl at low doses was the most used drug. Trial registration This study was registered at ClinicalTrials.gov database (NCT02840500) on July 19, 2016.

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Preliminary Functional Outcomes and Quality of Life after Tongue Reconstruction with the Vastus Lateralis Myofascial Free Flap

Facial Plastic Surgery ◽

10.1055/s-0041-1726445 ◽

2021 ◽

Author(s):

Armando De Virgilio ◽

Andrea Costantino ◽

Raul Pellini ◽

Gerardo Petruzzi ◽

Giuseppe Mercante ◽

...

Keyword(s):

Quality Of Life ◽

Head And Neck ◽

Free Flap ◽

Functional Outcomes ◽

Vastus Lateralis ◽

Life Questionnaire ◽

Donor Area ◽

Tongue Reconstruction ◽

Eortc Qlq

AbstractThe aim of the present study is to report our preliminary experience with the vastus lateralis myofascial free flap (VLMFF) for tongue reconstruction according to tongue and donor site functional outcomes. Twelve consecutive patients (F: 5; median age: 54.0 years, interquartile range or IQR 42.75–69.0) were included. The validated European Organization for Research and Treatment of Cancer of the Head and Neck 35 Quality of Life Questionnaire (EORTC QLQ-H&N35) and the performance status scale for head and neck cancer (PSS-HN) questionnaires were used to assess the health-related quality of life (HRQOL). The lower extremity functional scale (LEFS) was used to self-report the donor area function. All patients were successfully treated, and no VLMFF failure was detected during a median follow-up period of 10.5 months (IQR: 6.5–33.0). The HRQOL showed a median EORTC QLQ-H&N35 score of 56.0 (IQR: 50.0–72.5). The median PSS-HN score was 80.0 (IQR: 45.0–95.0), 75.0 (IQR: 62.5–100.0), 75.0 (IQR: 62.5–100.0) for “Normalcy of Diet,” “Public Eating,” and “Understandability of Speech,” respectively. The self-reported function of the lower extremities (donor area) showed a median LEFS of 59.0 (IQR: 32.5–74.0). This study reports optimistic data regarding the functional and quality of life outcomes after tongue reconstruction using VLMFF. Prospective controlled studies are needed to demonstrate advantages and disadvantages when compared with other reconstructive techniques.

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Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report

Allergy Asthma & Clinical Immunology ◽

10.1186/s13223-021-00537-2 ◽

2021 ◽

Vol 17 (1) ◽

Author(s):

Konrad Bork ◽

John T. Anderson ◽

Teresa Caballero ◽

Timothy Craig ◽

Douglas T. Johnston ◽

...

Keyword(s):

Quality Of Life ◽

Hereditary Angioedema ◽

Clinical Management ◽

Disease Burden ◽

The United States ◽

Consensus Meeting ◽

Consensus Statements ◽

Consensus Report

Abstract Background Hereditary angioedema (HAE) is a rare disease characterized by unpredictable, potentially life-threatening attacks, resulting in significant physical and emotional burdens for patients and families. To optimize care for patients with HAE, an individualized management plan should be considered in partnership with the physician, requiring comprehensive assessment of the patient’s frequency and severity of attacks, disease burden, and therapeutic control. Although several guidelines and consensus papers have been published concerning the diagnosis and treatment of HAE, there has been limited specific clinical guidance on the assessment of disease burden and quality of life (QoL) in this patient population. Practical guidance is critical in supporting effective long-term clinical management of HAE and improving patient outcomes. The objective of this review is to provide evidence-based guidelines for an individualized assessment of disease burden and QoL in patients with HAE. Methods A consensus meeting was held on February 29, 2020, consisting of 9 HAE experts from the United States and Europe with extensive clinical experience in the treatment of HAE. Consensus statements were developed based on a preliminary literature review and discussions from the consensus meeting. Results Final statements reflect the consensus of the expert panel and include the assessment of attack severity, evaluation of disease burden, and long-term clinical management of HAE caused by C1-esterase inhibitor deficiency. Patient-reported outcome measures for assessing HAE attack severity and frequency are available and valuable tools; however, attack frequency and severity are insufficient markers of disease severity unless they are evaluated in the broader context of the effect on an individual patient’s QoL. QoL assessments should be individualized for each patient and minimally, they should address the interference of HAE with work, school, social, family, and physical activity, along with access to and burden of HAE treatment. Advances in HAE therapies offer the opportunity for comprehensive, individualized treatment plans, allowing patients to achieve minimal attack burden with reduced disease and treatment burden. Conclusion This consensus report builds on existing guidelines by expanding the assessment of disease burden and QoL measures for patients with HAE.

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United States Utility Algorithm for the EORTC QLU-C10D, a Multiattribute Utility Instrument Based on a Cancer-Specific Quality-of-Life Instrument

Medical Decision Making ◽

10.1177/0272989x211003569 ◽

2021 ◽

pp. 0272989X2110035

Author(s):

Dennis A. Revicki ◽

Madeleine T. King ◽

Rosalie Viney ◽

A. Simon Pickard ◽

Rebecca Mercieca-Bebber ◽

...

Keyword(s):

Quality Of Life ◽

United States ◽

Emotional Functioning ◽

Health State ◽

Life Questionnaire ◽

Multiattribute Utility ◽

Value Set ◽

Eortc Qlq C30 ◽

Eortc Qlq

Background The EORTC QLU-C10D is a multiattribute utility measure derived from the cancer-specific quality-of-life questionnaire, the EORTC QLQ-C30. The QLU-C10D contains 10 dimensions (physical, role, social and emotional functioning, pain, fatigue, sleep, appetite, nausea, bowel problems). The objective of this study was to develop a United States value set for the QLU-C10D. Methods A US online panel was quota recruited to achieve a representative sample for sex, age (≥18 y), race, and ethnicity. Respondents undertook a discrete choice experiment, each completing 16 choice-pairs, randomly assigned from a total of 960 choice-pairs. Each pair included 2 QLU-C10D health states and duration. Data were analyzed using conditional logistic regression, parameterized to fit the quality-adjusted life-year framework. Utility weights were calculated as the ratio of each dimension-level coefficient to the coefficient for life expectancy. Results A total of 2480 panel members opted in, 2333 (94%) completed at least 1 choice-pair, and 2273 (92%) completed all choice-pairs. Within dimensions, weights were generally monotonic. Physical functioning, role functioning, and pain were associated with the largest utility weights. Cancer-specific dimensions, such as nausea and bowel problems, were associated with moderate utility decrements, as were general issues such as problems with emotional functioning and social functioning. Sleep problems and fatigue were associated with smaller utility decrements. The value of the worst health state was 0.032, which was slightly greater than 0 (equivalent to being dead). Conclusions This study provides the US-specific value set for the QLU-C10D. These estimated health state scores, based on responses to the EORTC QLQ-C30 questionnaire, can be used to evaluate the cost-utility of oncology treatments.

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The course of peripheral neuropathy and its association with health-related quality of life among colorectal cancer patients

Journal of Cancer Survivorship ◽

10.1007/s11764-020-00923-6 ◽

2020 ◽

Author(s):

Cynthia S. Bonhof ◽

Lonneke V. van de Poll-Franse ◽

Dareczka K. Wasowicz ◽

Laurens V. Beerepoot ◽

Gerard Vreugdenhil ◽

...

Keyword(s):

Quality Of Life ◽

Colorectal Cancer ◽

Peripheral Neuropathy ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Eortc Qlq ◽

The Impact

Abstract Purpose To gain more insight into the course of chemotherapy-induced peripheral neuropathy (CIPN) and its impact on health-related quality of life (HRQoL) in a population-based sample of colorectal cancer (CRC) patients up to 2 years after diagnosis. Methods All newly diagnosed CRC patients from four hospitals in the Netherlands were eligible for participation in an ongoing prospective cohort study. Patients (n = 340) completed questions on CIPN (EORTC QLQ-CIPN20) and HRQoL (EORTC QLQ-C30) before initial treatment (baseline) and 1 and 2 years after diagnosis. Results Among chemotherapy-treated patients (n = 105), a high sensory peripheral neuropathy (SPN) level was reported by 57% of patients at 1 year, and 47% at 2-year follow-up, whereas a high motor peripheral neuropathy (MPN) level was reported by 47% and 28%, at years 1 and 2, respectively. Linear mixed model analyses showed that SPN and MPN symptoms significantly increased from baseline to 1-year follow-up and did not return to baseline level after 2 years. Patients with a high SPN or MPN level reported a worse global quality of life and a worse physical, role, emotional, cognitive, and social functioning compared with those with a low SPN or MPN level. Conclusions Future studies should focus on understanding the mechanisms underlying CIPN so targeted interventions can be developed to reduce the impact of CIPN on patient’s lives. Implications for cancer survivors Patients need to be informed of both CIPN and the impact on HRQoL.

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Utilization of laser interstitial thermotherapy guided by real-time thermal MRI as an alternative to separation surgery in the management of spinal metastasis

Journal of Neurosurgery Spine ◽

10.3171/2015.2.spine141185 ◽

2015 ◽

Vol 23 (4) ◽

pp. 400-411 ◽

Cited By ~ 48

Author(s):

Claudio E. Tatsui ◽

R. Jason Stafford ◽

Jing Li ◽

Jonathan N. Sellin ◽

Behrang Amini ◽

...

Keyword(s):

Quality Of Life ◽

Spinal Cord ◽

Real Time ◽

Spinal Cord Compression ◽

Spinal Metastasis ◽

Cord Compression ◽

The Mean ◽

Interstitial Thermotherapy

OBJECT High-grade malignant spinal cord compression is commonly managed with a combination of surgery aimed at removing the epidural tumor, followed by spinal stereotactic radiosurgery (SSRS) aimed at local tumor control. The authors here introduce the use of spinal laser interstitial thermotherapy (SLITT) as an alternative to surgery prior to SSRS. METHODS Patients with a high degree of epidural malignant compression due to radioresistant tumors were selected for study. Visual analog scale (VAS) scores for pain and quality of life were obtained before and within 30 and 60 days after treatment. A laser probe was percutaneously placed in the epidural space. Real-time thermal MRI was used to monitor tissue damage in the region of interest. All patients received postoperative SSRS. The maximum thickness of the epidural tumor was measured, and the degree of epidural spinal cord compression (ESCC) was scored in pre- and postprocedure MRI. RESULTS In the 11 patients eligible for study, the mean VAS score for pain decreased from 6.18 in the preoperative period to 4.27 within 30 days and 2.8 within 60 days after the procedure. A similar VAS interrogating the percentage of quality of life demonstrated improvement from 60% preoperatively to 70% within both 30 and 60 days after treatment. Imaging follow-up 2 months after the procedure demonstrated a significant reduction in the mean thickness of the epidural tumor from 8.82 mm (95% CI 7.38–10.25) before treatment to 6.36 mm (95% CI 4.65–8.07) after SLITT and SSRS (p = 0.0001). The median preoperative ESCC Grade 2 was scored as 4, which was significantly higher than the score of 2 for Grade 1b (p = 0.04) on imaging follow-up 2 months after the procedure. CONCLUTIONS The authors present the first report on an innovative minimally invasive alternative to surgery in the management of spinal metastasis. In their early experience, SLITT has provided local control with low morbidity and improvement in both pain and the quality of life of patients.

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