R-Scale for Pulmonary Fibrosis (PF): a simple, visual tool for the assessment of health-related quality of life

2021 ◽  
pp. 2100917
Author(s):  
Ciaran Scallan ◽  
Lauren Strand ◽  
Jennifer Hayes ◽  
Suha Kadura ◽  
Bridget Collins ◽  
...  

RationalePatients with Idiopathic Pulmonary Fibrosis (IPF) experience impaired health related quality of life (HRQoL). Several tools have been developed to objectively assess HRQoL in this patient population, but none are in use in routine clinical practice.ObjectivesTo develop a rapid, specific tool that can be used for patients with IPF during routine clinic visits.MethodsA novel and simple 5-item numerical rating scale (NRS) was developed and compared with two other previously validated tools. 100 consecutive patients with IPF managed at the center for ILD, were recruited to complete the R-Scale-PF, the Kings Brief Interstitial Lung Disease Questionnaire (K-BILD), and the EuroQol 5-Dimensional 5-Level Questionnaire (EQ-5D-5 L) in addition to pulmonary function and 6-min walk tests.Measurements and Main ResultsAll 100 patients successfully completed the three HRQoL tools with 53 completing them again at follow up visits. Internal consistency was high (Cronbach's α 0.825) with minimal floor/ceiling effect. Concurrent validity of the R-Scale-PF was moderate to high compared with the K-BILD (r=−0.713) and the EQ-5D-5 L (r=−0.665). Concurrent validity was moderate with physiologic measures (forced vital capacity, r=−0.307, 6-min walk distance, r=−0.383). The R-Scale-PF demonstrated good known-groups validity when comparing scores across stages of disease severity.ConclusionsThe R-Scale-PF correlates well with the K-BILD and EQ-5D-5 L. It is hoped that this novel simple NRS tool subject to validation in patients from other centers will provide the opportunity to objectively measure HRQoL in routine clinical practice for patients with IPF.

2019 ◽  
Vol 19 (1) ◽  
pp. e13-e28 ◽  
Author(s):  
Nicolas Despiégel ◽  
Chantal Touboul ◽  
Alain Flinois ◽  
Grèce Saba ◽  
Florence Suzan ◽  
...  

Hematology ◽  
2010 ◽  
Vol 2010 (1) ◽  
pp. 248-254 ◽  
Author(s):  
Margaret Bevans

Abstract It is common knowledge that an allogeneic hematopoietic stem cell transplantation (HSCT) will have an enormous impact on the lives of transplant recipients and their families. Once an appropriate donor is identified, the curative potential of this treatment often drives the decision to proceed knowing that there will be intense physiologic toxicities and adverse effects on health-related quality of life (HRQL). Twenty-five years ago, HRQL was identified as an efficacy parameter in the evaluation of new anticancer drug therapy. Overall, the evidence suggests that an allogeneic HSCT has a significant impact on the overall HRQL of recipients, which is a result of decrements across all dimensions, including a significant symptom profile. The degree of impact on overall HRQL and the multiple dimensions varies across the transplant trajectory. Specific HRQL dimensions, such as physical function and symptoms, are easily incorporated into a clinician's assessment whereas other dimensions (eg, psychosocial) are less commonly integrated. The translation of HRQL results to improve clinical practice is not well established. Clinicians are often uncertain when to assess the scope of HRQL and how to interpret the information in a clinically meaningful way. The purpose of this review is to highlight the quality-of-life effects of allogeneic HSCT and discuss application into clinical practice.


2021 ◽  
Vol 4 (1) ◽  
pp. 17-21
Author(s):  
Saad Ali Nasir ◽  
Fareeha Amjad ◽  
Sana Rafaqat

Abstract:Restless Legs Syndrome (RLS) is a sensorymotor sleep disorder which his very common in hemodialysis (HD) patients. It is called also as uremic RLS and it is affecting almost 30%of the HD population. Objective: To find out impact of Restless Leg Syndrome on fatigue and quality of life in patients of hemodialysis.Methadology: 131 hemodialysis patients (male, female) were approached from different hospitals in Lahore. Demographic data of the patients were collected. Questionnaires were included Fatigue Severity Scale, Restless Legs Syndrome Questionnaire (Rating Scale) and health quality questionnaire SF-12®. All responses entered in SPSS version 21.Results: In this survey SF12 was used to nd about health related quality of life in patients with RLS and undergoing hemodialysis and fatigue was observed in (n-75%) patients with exercise, (n34%) reported fatigue interference with work and (n-22%) reported fatigue was constant problem. Quality of life was overall poor as (n-72 %) patient's complaint that they cannot do any kind of work with full focus and 34 % reported their moderate activity level was limited.Conclusion: RLS was frequent in patients with hemodialysis. it had an association with fatigue and poor quality of life. As hemodialysis patients spend most of their time on bed RLS has negative impact on the sleep. Health Related Quality Of Life affects both physical and mental health.Keywords: Restless Leg Syndrome, Fatigue, low quality oflife, Hemodialysis patients


2020 ◽  
Vol 29 (10) ◽  
pp. 2651-2660
Author(s):  
Richard W. Joseph ◽  
Frank Xiaoqing Liu ◽  
Alicia C. Shillington ◽  
Cynthia P. Macahilig ◽  
Scott J. Diede ◽  
...  

Abstract Background Pembrolizumab (PEMBRO) and ipilimumab + nivolumab (IPI + NIVO) are approved advanced melanoma (AM) immunotherapies. To address limited health-related quality of life (QoL) real-world evidence with immunotherapies in AM, we compared QoL in AM patients receiving either treatment in clinical practice. Methods A prospective US observational study enrolled adult AM patients initiating first-line PEMBRO or IPI + NIVO between June 2017 and March 2018. Endpoints included the QLQ-C30 global health score (GHS) and EuroQol visual analog scale (EQ-VAS) scores. Mean changes were compared using repeated measures mixed-effects models and are presented covariate adjusted. Results 225 PEMBRO and 187 IPI + NIVO patients were enrolled. From baseline through week 24, PEMBRO was associated with 3.2 mean GHS score increase (95% CI 0.5, 5.9; p = .02), while no change was observed with IPI + NIVO; 0.2 (95% CI − 2.6, 3.0; p = 0.87). Among objective treatment-responders, GHS scores associated with PEMBRO increased 6.0 (95% CI 3.1, 8.8; p < .0001); IPI + NIVO patients increased 3.8 (95% CI 0.8, 6.9; p = .01). In treatment non-responders, IPI + NIVO was associated with GHS/QoL deterioration of − 3.7 (95% CI − 6.8, − 0.6; p = .02), PEMBRO non-responders demonstrated no change; 0.7 (95% CI − 2.3, 3.7; p = 0.6). Between treatments, PEMBRO patients increased 2.6 greater in EQ-VAS (95% CI 0.6, 4.5; p = .01) vs IPI + NIVO at 24 weeks. Conclusions PEMBRO was associated with better 24-week QoL compared to IPI + NIVO in actual clinical practice settings. Real-world data has known limitations, but with further confirmation these results may have implications for treatment selection.


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