scholarly journals The burden of illness in patients with paroxysmal nocturnal hemoglobinuria receiving treatment with the C5-inhibitors eculizumab or ravulizumab: results from a US patient survey

2022 ◽  
Author(s):  
David Dingli ◽  
Joana E. Matos ◽  
Kerri Lehrhaupt ◽  
Sangeeta Krishnan ◽  
Michael Yeh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Paroxysmal Nocturnal Hemoglobinuria ◽  
Burden Of Illness ◽  
Patient Survey ◽  
Life Questionnaire ◽  
Complement Protein ◽  
Cross Sectional ◽  
European Organization ◽  
Patient Reported

Abstract Paroxysmal nocturnal hemoglobinuria (PNH) is a rare and life-threatening disease with symptoms of hemolysis and thrombosis. Current therapies for this complement-mediated disease rely predominantly on inhibition of the C5 complement protein. However, data on treatment responses and quality of life in C5-inhibitor (C5i)-treated PNH patients are scarce. The objective of this study was to determine C5i treatment effects on clinical parameters, PNH symptoms, quality of life, and resource use for PNH patients. This cross-sectional study surveyed 122 individuals in the USA receiving treatment for PNH with C5-targeted monoclonal antibodies, eculizumab (ECU) or ravulizumab (RAV). Despite most patients receiving C5i therapy for ≥ 3 months (ECU 100%, n = 35; RAV 95.4%, n = 83), many patients remained anemic with hemoglobin levels ≤ 12 g/dL in 87.5% (n = 28/32) and 82.9% (n = 68/82) of ECU and RAV recipients, respectively. A majority of patients on ECU (88.6%; n = 31/35) and RAV (74.7%; n = 65/87) reported fatigue symptoms. Among PNH patients receiving C5i therapy for ≥ 12 months, some still reported thrombotic events (ECU, 10.0%, n = 1/10; RAV, 23.5%, n = 4/17) and required transfusions within the past year (ECU, 52.2%, n = 12/23; RAV, 22.6%, n = 7/31). Other patient-reported PNH symptoms included breakthrough hemolysis, shortness of breath, and headaches. Patients reported scores below the average population norms on the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) scales. Overall, this study found that PNH patients receiving ECU or RAV therapy demonstrated a significant burden of illness, highlighting the need for improved PNH therapies.

scholarly journals Quality of life of patients with lung cancer: A scoping review

2019 ◽  
Vol 22 (2) ◽  
Author(s):  
Rafael Turano Mota ◽  
Helder Márcio Ferreira Júnior ◽  
Fabiane Silva Pereira ◽  
Maria Aparecida Vieira ◽  
Simone de Melo Costa
Keyword(s):  
Quality Of Life ◽  
Lung Cancer ◽  
Scoping Review ◽  
Prospective Studies ◽  
Current Knowledge ◽  
Care Quality ◽  
Life Questionnaire ◽  
Cross Sectional ◽  
European Organization

Abstract Objective: To characterize scientific publications on the quality of life of people with lung cancer in order to explore current knowledge of the subject, with emphasis on assessment instruments and methodological aspects. Method: A scoping type literature review was performed. Articles were sought in the databases of the Virtual Health Library, in an integrative manner, with the descriptors: Quality of life and Lung Neoplasms, with no date of publication or language restrictions (n=138). The selection of articles was based on inclusion and exclusion criteria defined in the study proposal. Results: We included 18 publications published between 2006 and 2017, the majority (n = 10) of which had a cross-sectional design. Eight different instruments were used to evaluate the quality of life of patients with lung cancer, four of which were specific for people with cancer. There was a prevalence of the use of the European Organization for Research and Treatment of Cancer Care Quality of Life Questionnaire - EORTC QLQ-C30 (n=8). Prospective studies (n=8) assessed quality of life before and after chemotherapy, physical therapy or pulmonary resection. The studies adopted different methodologies and provided conflicting results of quality of life. Cross-sectional studies with comparatively healthy subjects found an inferior quality of life for people with lung cancer. Conclusion: The scoping review contributed to the identification of the multiple evaluated instruments, both generic and specific. It found a lack of homogeneity in the methodological approaches of the studies. Further prospective studies with a specific instrument and methodological standardization to evaluate the quality of life of people with lung cancer are recommended.

scholarly journals Penilaian kualitas hidup penderita karsinoma nasofaring berdasarkan Karnofsky Scale, EORTC QLQ-C30 dan EORTC QLQ-H & N35

2014 ◽  
Vol 43 (2) ◽  
pp. 110
Author(s):  
Dewi Kurniawati ◽  
Frederik George Kuhuwael ◽  
Abdul Qadar Punagi
Keyword(s):  
Quality Of Life ◽  
Karnofsky Performance Scale ◽  
Life Questionnaire ◽  
Cross Sectional ◽  
European Organization ◽  
Quality Of Life Questionnaire ◽  
Eortc Qlq C30 ◽  
Eortc Qlq ◽  
Performance Scale

Latar belakang: Karsinoma nasofaring (KNF) berpengaruh terhadap kualitas hidup penderita, baik dari kankernya sendiri, maupun pengobatan serta efek sampingnya. Penilaian kualitas hidup penderita KNF dapat secara unidimensional menggunakan parameter status tampilan Karnofsky Performance Scale (Karnofsky PS) atau multidimensional memakai parameter European Organization For Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30) dan European Organization For Research And Treatment Of Cancer Head and Neck Cancer Quality of Life Questionnaire (EORTC QLQ-H&N35).Tujuan: Menilai kesesuaian hasil skor Karnofsky PS, EORTC QLQ-C30 dan EORTC QLQ-H&N35 dalam menilai kualitas hidup penderita KNF dengan menentukan korelasi antar parameter dan menentukan estimasi skor Karnofsky PS menggunakan skor EORTC QLQ-C30 dan skor EORTC QLQ-H&N35. Menganalisis hubungan antar parameter menurut stadium.Metode: Penelitian adalah observasional analitik dengan pedekatan cross sectional. Populasinya semua kasus KNF yang berobat ke Bagian THT-KL, Rumah Sakit Wahidin Sudirohusodo, Makassar. Sampel sebanyak 48 orang dipilih secara purposive. Penilaian kualitas hidup menggunakan parameter Karnofsky PS, EORTC QLQ-C30 dan EORTC QLQ-H&N35. Hasil: Didapati kesesuaian hasil skor dari ketiga parameter, ditandai adanya korelasi bermakna antara skor Karnofsky PS, skor EORTC QLQ-C30 dan skor EORTC QLQ-H&N35. Semakin tinggi skor Karnofsky PS, akan semakin rendah skor EORTC QLQ-C30 dan skor EORTC QLQ-H&N35 maka kualitas hidup penderita KNF semakin baik. Skor EORTC QLQ-C30 dan skor EORTC QLQ-H&N35 dapat mengestimasi skor Karnofsky PS. Terdapat hubungan bermakna antara Karnofsky PS, EORTC QLQ-C30 dan EORTC QLQ-H&N35 menurut stadium (p<0,05). Kesimpulan: DEORTC QLQ-C30 dan EORTC QLQ-H&N35 dapat melengkapi Karnofsky PS dalam penilaian kualitas hidup penderita kanker kepala leher terutama KNF. Kata kunci: Kualitas hidup, KNF, Karnofsky PS, EORTC QLQ-C30, EORTC QLQ-H&N3.

scholarly journals Quality of life trajectories during the first three years after diagnosis of breast cancer: the NEON-BC study

2019 ◽  
Author(s):  
Luisa Lopes-Conceição ◽  
Mariana Brandão ◽  
Natália Araújo ◽  
Milton Severo ◽  
Teresa Dias ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Sleep Quality ◽  
Patient Reported Outcomes ◽  
Life Questionnaire ◽  
European Organization ◽  
Life Trajectories ◽  
Patient Reported ◽  
Anxiety Depression

Abstract Background We aimed to identify and characterize quality of life trajectories up to 3 years after breast cancer diagnosis. Methods A total of 460 patients were evaluated at baseline (before treatments), and after 1- and 3-years. Patient-reported outcomes, including quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, QLQ-C30), anxiety, depression and sleep quality, were assessed in all evaluations. Model-based clustering was used to identify quality of life trajectories. Results We identified four trajectories without intersection during 3 years. The two trajectories characterized by better quality of life depicted relatively stable scores; in the other trajectories, quality of life worsened until 1 year, though in one of them the score at 3 years improved. Sociodemographic and clinical characteristics at baseline did not differ between trajectories, except for mastectomy, which was higher in the worst trajectory. Anxiety, depression and poor sleep quality increased from the best to the worst trajectory. Conclusions The type of surgery and the variation of other patient-reported outcomes were associated with the course of quality of life over 3 years. More research to understand the heterogeneity of individual trajectories within these major patterns of variation is needed.

Self-reported financial stress among patients evaluated at a community cancer program.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 6553-6553
Author(s):  
Christopher S. Lathan ◽  
Ruth N. Akindele ◽  
Ludmila Svoboda ◽  
Daniel A. Gundersen
Keyword(s):  
Quality Of Life ◽  
Underserved Populations ◽  
Financial Burden ◽  
Financial Stress ◽  
Stress Index ◽  
Life Questionnaire ◽  
European Organization ◽  
Cancer Program ◽  
Patient Reported

6553 Background: Cancer related financial stress has been linked to a multitude of factors including socio-economic status, but its impact on the quality of life (QOL) for underserved populations is less well characterized. We evaluated patient reported financial stress, QOL, and quality of health (QOH) at an outreach cancer program located in a federally qualified health center. Methods: Study participants were interviewed at initial clinic visit for financial stress, QOH and QOL between January 2012 and December 2016. Demographic information, insurance coverage, clinical parameters, and comorbidities were abstracted from participants’ medical records. Responses to the financial stress index question “how difficult is it for you or your family to meet monthly payment of your/your family bills?” and overall QOL and QOH of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 were analyzed. Proportional odds logistic regression models were constructed for 5-point quality of life measures and three levels of financial toxicity. Results: Of the 288 participants analyzed, 52% and 12% reported somewhat and extreme financial stress. In an adjusted analysis, patients who reported financial stress were more likely to be younger in age (OR = 4.03, p < 0.001) unemployed (OR = 3.24, p = 0.002), have less than bachelor’s degree (OR = 0.035, p = 0.018), insured by Medicaid (OR = 3.22, p < 0.011), and were more likely to rate their QOL (OR = 3.76, p = 0.031) as poor, compared to those without financial stress. Race, gender, presence of cancer diagnosis and comorbidities were not associated with financial distress. Independent predictors of poor QOL were disability (OR = 3.12, p = 0.005), depression (OR = 2.12, p = 0.007) and extreme financial difficulty (OR = 2.57, p = 0.011). There was a nearly perfect positive correlation between overall QOL and QOH (r = 0.984, p < 0.001). Conclusions: There is a high prevalence of financial burden among underserved minority patients seeking cancer related care, and this is closely associated with poor quality of life. Interventions targeting cancer disparities need to assess financial stress in order to address this issue.

scholarly journals Self-esteem and health-related quality of life in ostomized patients

2017 ◽  
Vol 70 (2) ◽  
pp. 271-278 ◽  
Author(s):  
Emmanuelle da Cunha Ferreira ◽  
Maria Helena Barbosa ◽  
Helena Megumi Sonobe ◽  
Elizabeth Barichello
Keyword(s):  
Quality Of Life ◽  
Global Health ◽  
Self Esteem ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Cross Sectional ◽  
European Organization ◽  
Related Quality ◽  
Health Related

ABSTRACT Objective: to assess self-esteem (SE) and health-related quality of life (HRQoL) in ostomized patients due to colorectal cancer. Method: cross sectional research with a quantitative approach. Three instruments were used for data collection: one instrument containing sociodemographic and clinical data, Rosenberg's Self-Esteem Scale, and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire. Results: SE and HRQoL were considered satisfactory. Significant statistical difference was found in the social function domain and marital status, ostomy duration, location, and time; global health scale and ostomy type; cognitive function and pain in the ostomy site. There was a correlation between self-esteem and all the functional scales and the global health scale. Conclusion: knowing SE and HRQoL levels, in addition to the variables that influence them, supports ostomized patients' care planning, rehabilitation, and social autonomy.

Patient-reported Flares in Ankylosing Spondylitis: A Cross-sectional Analysis of 234 Patients

2016 ◽  
Vol 44 (4) ◽  
pp. 425-430 ◽  
Author(s):  
Charlotte Jacquemin ◽  
Walter P. Maksymowych ◽  
Annelies Boonen ◽  
Laure Gossec
Keyword(s):  
Quality Of Life ◽  
New York ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Self Report ◽  
Life Questionnaire ◽  
Related Factors ◽  
Cross Sectional ◽  
Patient Reported

Objective.Ankylosing spondylitis (AS) is characterized by periodic flares. The objective of this study was to assess the frequency of patient-reported flares and their related factors.Methods.This cross-sectional study analyzed the 2004 data of a Canadian cohort. Participants had AS according to the modified New York criteria. Current flare status (“Are you experiencing a current flare”?), number of flares over the past 3 months, their average duration, the Bath Ankylosing Spondylitis Disease Activity and Functional Index (BASDAI and BASFI, respectively), and the AS Quality of Life questionnaire were assessed by self-report. Univariate and multivariate regressions analyzed the factors associated with current flare.Results.Among 234 analyzed patients, 169 (73.5%) were men, mean age was 45.5 (± 11.8) years, mean disease duration of 21.7 (± 11.7) years, and mean BASDAI and BASFI (0–10) of 4.4 (± 2.3) and 3.4 (± 2.6), respectively; 18 (7.7%) received antitumor necrosis factor (anti-TNF). Overall, 175 patients (74.8%) reported flares and 117 (50%) were currently in flare. Patients reporting flares had a median of 3 flares in 3 months, with a median duration of 2 weeks. Overall, the 234 patients spent a median of 25% of their time in flare. In multivariate analyses, current flare was significantly associated with higher BASDAI (OR 2.01, p = 0.01), worse quality of life (OR 1.37, p = 0.004), shorter AS duration (OR 1.19, p = 0.04), and less anti-TNF (OR 7.14, p = 0.03).Conclusion.In this population, before the wide use of biologics, flares were frequent and long. As expected, flare was associated with higher disease activity, suggesting the validity of the concept of patient-reported flares.

The Prognostic Significance of Patient-Reported Outcomes in Cancer Clinical Trials

2008 ◽  
Vol 26 (8) ◽  
pp. 1355-1363 ◽  
Author(s):  
Carolyn C. Gotay ◽  
Crissy T. Kawamoto ◽  
Andrew Bottomley ◽  
Fabio Efficace
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Patient Reported Outcomes ◽  
Prognostic Significance ◽  
Cancer Clinical Trials ◽  
Life Questionnaire ◽  
European Organization ◽  
Patient Reported ◽  
The Impact

Purpose Patient-reported outcomes (PROs), routinely collected as a part of cancer clinical trials, have been linked with survival in numerous clinical studies, but a comprehensive critical review has not been reported. This study systematically assessed the impact of PROs on patient survival after a cancer diagnosis within the context of clinical trials. Design Cancer clinical trials that assessed baseline PROs and mortality were identified through MEDLINE (through December 2006) supplemented by the Cochrane database, American Society of Clinical Oncology/European Society for Medical Oncology abstracts and hand searches. Inclusion criteria were publication in English language and use of multivariate analyses of PROs that controlled for one or more clinical factors. Two raters reviewed each study, abstracted data, and assessed study quality; two additional raters verified abstractions. Results In 36 of 39 studies (N = 13,874), at least one PRO was significantly associated with survival (P < .05) in multivariate analysis, with varying effect sizes. Studies of lung (n = 12) and breast cancer (n = 8) were most prevalent. The most commonly assessed PRO was quality of life, measured by the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 in 56% of studies. Clinical variables adjusted for included performance status (PS), treatment arm, stage, weight loss, and serum markers. Results indicated that PROs provide distinct prognostic information beyond standard clinical measures in cancer clinical trials. Conclusion PROs might be considered for stratification purposes in future trials, as they were often better predictors of survival than PS. Studies are needed to determine whether interventions that improve PROs also increase survival and to identify explanatory mechanisms through which PROs relate to survival.

How Accurate Is Clinician Reporting of Chemotherapy Adverse Effects? A Comparison With Patient-Reported Symptoms From the Quality-of-Life Questionnaire C30

2004 ◽  
Vol 22 (17) ◽  
pp. 3485-3490 ◽  
Author(s):  
Erik K. Fromme ◽  
Kristine M. Eilers ◽  
Motomi Mori ◽  
Yi-Ching Hsieh ◽  
Tomasz M. Beer
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Adverse Event ◽  
Adverse Effects ◽  
Adverse Events ◽  
Life Questionnaire ◽  
European Organization ◽  
Quality Of Life Questionnaire ◽  
Patient Reported

Purpose Adverse events in chemotherapy clinical trials are assessed and reported by clinicians, yet clinician accuracy in assessing symptoms has been questioned. We compared patient reporting of eight symptoms using a validated instrument, the European Organization for the Research and Treatment of Cancer Quality-of-Life Questionnaire C30 (QLQ-C30 or QLQ) with physicians' reporting of the same symptoms in the study's adverse events log. Patients and Methods Thirty-seven men with metastatic, androgen-independent prostate cancer enrolled onto a phase II trial of weekly calcitriol and docetaxel completed the QLQ every 4 weeks for up to 28 weeks. A patient-reported symptom was defined as an increase in a QLQ symptom score by at least 10 points (0 to 100 scale), sustained for at least 4 weeks. A physician-reported symptom was considered present if it was ever documented in the adverse event log. Results Forty-nine (new or worsened) symptoms were detected by both physician and QLQ, 48 symptoms were detected by the physician alone, and 55 symptoms were detected by the QLQ alone. They agreed on the absence of a symptom in 102 instances of 254 possible opportunities. Their uncorrected agreement was 59.4%, but Cohen's κ, a coefficient of agreement that corrects for chance, was 0.15, indicating only slight agreement. Using the QLQ as the standard, overall physician sensitivity and specificity was 47% and 68%, respectively, although it varied considerably among symptoms. Conclusion Even in a tightly controlled clinical trial, physician reporting was neither sensitive nor specific in detecting common chemotherapy adverse effects. Tools for collecting patient-reported adverse event data in chemotherapy clinical trials should be developed.

scholarly journals Neurocognitive, Symptom, and Health- Related Quality of Life Outcomes of a Randomized Trial of Bevacizumab for Newly Diagnosed Glioblastoma (NRG/RTOG 0825)

2021 ◽  
Author(s):  
Jeffrey S Wefel ◽  
Terri S Armstrong ◽  
Stephanie L Pugh ◽  
Mark R Gilbert ◽  
Merideth M Wendland ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Function ◽  
Phase Iii ◽  
Life Questionnaire ◽  
Patient Centered ◽  
European Organization ◽  
Patient Reported ◽  
Survival Endpoints ◽  
Over Time

Abstract Background Results of NRG Oncology RTOG 0825 reported adding bevacizumab to standard chemoradiation did not significantly improve survival endpoints and resulted in greater decline in neurocognitive function (NCF) and patient reported outcomes (PRO) over time in bevacizumab treated patients. The present report provides additional results of patient centered outcomes over time and their prognostic association with survival endpoints. Methods NCF tests, MD Anderson Symptom Inventory brain tumor module (MDASI-BT), and European Organization for Research and Treatment of Cancer (EORTC) quality of life questionnaire with brain-cancer module (QLQ-C30/BN20) were completed in a subset of progression-free patients at baseline and longitudinally. The prognostic value of baseline and early changes in NCF and PROs and differences between treatments from baseline to follow-up assessments was evaluated. Results 508 randomized patients participated. Baseline/early changes in NCF and PROs were prognostic for OS and PFS. No between arm differences in time to deterioration was found. At week 6, patients treated with bevacizumab evidenced greater improvement on NCF tests of executive function and the MDASI-BT Cognitive Function scale, but simultaneously reported greater decline on the EORTC Cognitive Function Scale. At later time points (week 22, 34, and 46), patients treated with bevacizumab had greater worsening on NCF tests as well as PRO measures of cognitive, communication, social function, motor symptoms, general symptoms and interference. Conclusion The collection of patient centered clinical outcome assessments in this phase III trial revealed greater deterioration in NCF, symptoms and QOL in patients treated with bevacizumab. Baseline and early change in NCF and PROs were prognostic for survival endpoints.

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