scholarly journals Health-related quality Of Life In patients with advanced Soft TIssue sarcomas treated with Chemotherapy (The HOLISTIC study): protocol for an international observational cohort study

BMJ Open ◽  
2020 ◽  
Vol 10 (6) ◽  
pp. e035171 ◽  
Author(s):  
Eugenie Younger ◽  
Robin L Jones ◽  
Ingrid M E Desar ◽  
Clare Peckitt ◽  
Winette T A van der Graaf ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Soft Tissue ◽  
Soft Tissue Sarcomas ◽  
Health Related Quality ◽  
First Line ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Line Chemotherapy

IntroductionChemotherapy is the mainstay of treatment for patients with advanced soft tissue sarcomas (STS). Treatment intent is usually palliative, aiming to improve symptoms, stabilise or reduce tumour burden and extend life. Clinical trials have traditionally used radiological response, time to progression and survival as measures of treatment efficacy. Health-related quality of life (HRQoL) is at least equally important or more important than survival for many patients with advanced cancer. Systematically collecting HRQoL data during chemotherapy can provide greater insight into treatment efficacy from the patient perspective.The primary aims of this study are to evaluate HRQoL in patients with advanced STS treated with chemotherapy over time, explore the decision-making process and patient reflection post-treatment.Methods and analysisThis is an observational, international cohort study for 132 patients aged ≥18 years with advanced STS treated at eight centres (three in the UK, five in the Netherlands). Patients will be recruited prior to starting first-line or third-line chemotherapy and invited to complete questionnaires using the Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship registry (PROFILES); an established international registry for collection of cancer patient-reported outcomes. Online (or paper) questionnaires will be completed at baseline, each cycle of chemotherapy and 2–3 monthly during follow-up. The questionnaire package includes the Decisional Conflict Scale, Control Preferences Scale, Quality–Quantity Questionnaire, treatment expectations, European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC-QLQ-C30), EORTC financial toxicity items, Work Ability Index, Functional Assessment of Cancer Therapy-General (FACT-G) items and Decisional Regret Scale. Clinical data will be extracted from patient records and linked with questionnaire responses. The primary outcome measure is the change in global HRQoL from baseline to after cycle 4 of first-line chemotherapy (based on published data showing that patients with advanced STS complete a median number of four cycles of first-line chemotherapy).Ethics and disseminationHeath Research Authority and Research Ethics Committee (REC 17/NI/0197). Results from the Health-related quality Of Life In patients with advanced Soft TIssue sarcomas treated with Chemotherapy (HOLISTIC) study will be published in peer-reviewed journals and disseminated at local, national and international conferences. We will also present our findings at any appropriate patient meetings and involve patients in study-related publications.Trial registration numberNCT03621332.

scholarly journals Immune Thrombocytopenia (ITP): Current Limitations in Patient Management

Medicina ◽  
2020 ◽  
Vol 56 (12) ◽  
pp. 667
Author(s):  
Deirdra R. Terrell ◽  
Cindy E. Neunert ◽  
Nichola Cooper ◽  
Katja M. Heitink-Pollé ◽  
Caroline Kruse ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Immune Thrombocytopenia ◽  
Patient Reported Outcomes ◽  
Physical Symptoms ◽  
Health Related Quality ◽  
First Line ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Primary immune thrombocytopenia (ITP) is an acquired autoimmune disorder characterized by isolated thrombocytopenia caused by increased platelet destruction and impaired platelet production. First-line therapies include corticosteroids, intravenous immunoglobulin, and anti-D immunoglobulin. For patients who are refractory to these therapies, those who become corticosteroid dependent, or relapse following treatment with corticosteroid, options include splenectomy, rituximab, and thrombopoietin-receptor agonists, alongside a variety of additional immunosuppressive and experimental therapies. Despite recent advances in the management of ITP, many areas need further research. Although it is recognized that an assessment of patient-reported outcomes in ITP is valuable to understand and guide treatment, these measures are not routinely measured in the clinical setting. Consequently, although corticosteroids are first-line therapies for both children and adults, there are no data to suggest that corticosteroids improve health-related quality of life or other patient-related outcomes in either children or adults. In fact, long courses of corticosteroids, in either children or adults, may have a negative impact on a patient’s health-related quality of life, secondary to the impact on sleep disturbance, weight gain, and mental health. In adults, additional therapies may be needed to treat overt hemorrhage, but unfortunately the results are transient for the majority of patients. Therefore, there is a need to recognize the limitations of current existing therapies and evaluate new approaches, such as individualized treatment based on the probability of response and the size of effect on the patient’s most bothersome symptoms and risk of adverse effects or complications. Finally, a validated screening tool that identifies clinically significant patient-reported outcomes in routine clinical practice would help both patients and physicians to effectively follow a patient’s health beyond simply treating the laboratory findings and physical symptoms of ITP. The goal of this narrative review is to discuss management of newly diagnosed and refractory patients with ITP, with a focus on the limitations of current therapies from the patient’s perspective.

Assessment of Adrenal Function and Health-Related Quality of Life in Advanced Gastric Cancer Patients Who Received First-Line Chemotherapy

Oncology ◽  
2016 ◽  
Vol 90 (5) ◽  
pp. 248-254
Author(s):  
Hye Ryun Kim ◽  
Jee Hung Kim ◽  
Yumie Rhee ◽  
Hosun Lee ◽  
Seung Eun Song ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Gastric Cancer ◽  
Cancer Patients ◽  
Health Related Quality ◽  
First Line ◽  
Related Quality ◽  
Health Related ◽  
Gastric Cancer Patients ◽  
Line Chemotherapy

scholarly journals Quality of Life of Patients with Metastatic Pancreatic Adenocarcinoma Initiating First‐Line Chemotherapy in Routine Practice

2020 ◽  
Author(s):  
Berta Laquente ◽  
Teresa Macarulla ◽  
Cristina Bugés ◽  
Marta Martín ◽  
Carlos García ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Pancreatic Adenocarcinoma ◽  
Health Related Quality ◽  
First Line ◽  
Metastatic Pancreatic Adenocarcinoma ◽  
Related Quality ◽  
Health Related ◽  
Line Chemotherapy

Abstract Background Considering the physical decline of patients with metastatic pancreatic adenocarcinoma, assessing their health-related quality of life becomes a matter of major concern. Methods Observational, prospective, multicenter study including patients with metastatic pancreatic adenocarcinoma who started first‐line chemotherapy in 12 Spanish centers. Treatment and clinical characteristics were recorded at baseline. Patients’ health-related quality of life, ECOG, and Karnofsky index were measured at baseline, at Days 15 and 30, and every four weeks up to 6 months of chemotherapy. Health-related quality of life was measured using the EORTC-QLQ‐C30 and EQ-5D questionnaires. Other endpoints included overall survival and progression‐free survival. Results The study sample included 116 patients (median age of 65 years). Mean (SD) scores for the QLQ-C30 global health status scale showed a significant increasing trend throughout the treatment (p=0.005). Patients with either a Karnofsky index of 70-80 or ECOG 2 showed greater improvement in the QLQ-C30 global health status score than the corresponding groups with better performance status (p≤0.010). Pain, appetite, sleep disturbance, nausea, and constipation significantly improved throughout the treatment (p<0.005). Patients with QLQ-C30 global health status scores ≥50 at baseline had significantly greater overall survival and progression-free survival (p=0.005 and p=0.021, respectively). No significant associations were observed regarding the EQ-5D score. Conclusions Most metastatic pancreatic adenocarcinoma patients receiving first-line chemotherapy improved their health-related quality of life throughout the treatment. Patients with lower performance status and health-related quality of life at baseline tended to greater improvement. The EORTC QLQ-C30 scale is suitable for measuring the health-related quality of life of metastatic pancreatic adenocarcinoma patients receiving first-line chemotherapy.

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