scholarly journals The PARADIGHM (physicians advancing disease knowledge in hypoparathyroidism) registry for patients with chronic hypoparathyroidism: study protocol and interim baseline patient characteristics

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Neil Gittoes ◽  
Lars Rejnmark ◽  
Steven W. Ing ◽  
Maria Luisa Brandi ◽  
Sigridur Björnsdottir ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Conventional Therapy ◽  
Pediatric Patients ◽  
Short Form ◽  
Patient Characteristics ◽  
Routine Clinical Practice ◽  
Serum Total Calcium ◽  
Related Quality ◽  
Health Related ◽  
Chronic Hypoparathyroidism

Abstract Background The PARADIGHM registry of adult and pediatric patients with chronic hypoparathyroidism evaluates the long-term safety and effectiveness of treatment with recombinant human parathyroid hormone, rhPTH(1-84), and describes the clinical disease course under conditions of routine clinical practice. In this first report, we detail the registry protocol and describe the baseline characteristics of two adult patient cohorts from an interim database analysis. One cohort after study entry were prescribed rhPTH(1-84), and the other cohort received conventional therapy of calcium and active vitamin D. Methods An observational study of patients with chronic hypoparathyroidism in North America and Europe, collecting data for ≥10 years per patient. Main outcome measures were baseline patient demographics, clinical characteristics, medications, and disease outcome variables of symptoms, biochemical parameters, and health assessments. Baseline is the enrollment assessment for all variables except biochemical measurements in patients treated with rhPTH(1-84); those measurements were the most recent value before the first rhPTH(1-84) dose. Exclusion criteria applied to the analysis of specified outcomes included pediatric patients, patients who initiated rhPTH(1-84) prior to enrollment, and those who received rhPTH(1-34). Clinically implausible biochemical outlier data were excluded. Results As of 30 June 2019, data of 737 patients were analyzed from 64 centers; 587 (80%) were women, mean ± SD age 49.1±16.45 years. At enrollment, symptoms reported for patients later prescribed rhPTH(1-84) (n=60) and those who received conventional therapy (n=571), respectively, included fatigue (51.7%, 40.1%), paresthesia (51.7%, 29.6%), muscle twitching (48.3%, 21.9%), and muscle cramping (41.7%, 33.8%). Mean serum total calcium, serum phosphate, creatinine, and estimated glomerular filtration rate were similar between cohorts. Health-related quality of life (HRQoL) 36-item Short Form Health Survey questionnaire scores for those later prescribed rhPTH(1-84) were generally lower than those for patients in the conventional therapy cohort. Conclusions At enrollment, based on symptoms and HRQoL, a greater percentage of patients subsequently prescribed rhPTH(1-84) appeared to have an increased burden of disease than those who received conventional therapy despite having normal biochemistry measurements. PARADIGHM will provide valuable real-world insights on the clinical course of hypoparathyroidism in patients treated with rhPTH(1-84) or conventional therapy in routine clinical practice. Trial registration EUPAS16927, NCT01922440

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 ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Pulmonary Fibrosis ◽  
Concurrent Validity ◽  
Rating Scale ◽  
Routine Clinical Practice ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

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.

scholarly journals Health-Related Quality of Life of Patients With Multiple Myeloma Treated in Routine Clinical Practice in France

2019 ◽  
Vol 19 (1) ◽  
pp. e13-e28 ◽  
Author(s):  
Nicolas Despiégel ◽  
Chantal Touboul ◽  
Alain Flinois ◽  
Grèce Saba ◽  
Florence Suzan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
Clinical Practice ◽  
Routine Clinical Practice ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Pediatric patients report lower Health‐Related Quality of Life in daily clinical practice compared to new normative PedsQL TM data

2021 ◽  
Author(s):  
Maud M. van Muilekom ◽  
Michiel A.J. Luijten ◽  
Hedy A. van Oers ◽  
Thirsa Conijn ◽  
Heleen Maurice‐Stam ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Pediatric Patients ◽  
Daily Clinical Practice ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Lower Health

Association of Physical Morbidity and Health-Related Quality of Life in a Representative Sample of Older German People

2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer
Keyword(s):  
Quality Of Life ◽  
Representative Sample ◽  
Short Form ◽  
Physical Symptoms ◽  
German Population ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.

Factors Affecting Health-Related Quality of Life After the Arterial Switch Operation

2021 ◽  
Vol 12 (3) ◽  
pp. 344-351
Author(s):  
Julie Cleuziou ◽  
Anna-Katharina Huber ◽  
Martina Strbad ◽  
Masamichi Ono ◽  
Alfred Hager ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Arterial Switch Operation ◽  
Health Related Quality ◽  
Switch Operation ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Cardiac Medication

Background: Long-term morbidity and mortality outcomes of the arterial switch operation (ASO) in patients with transposition of the great arteries and Taussig-Bing anomaly are excellent. With an increasing number of patients reaching adolescence and adulthood, more attention is directed toward quality of life. Our study aimed to determine the health-related quality of life (hrQoL) outcomes in patients after the ASO and identify factors influencing their hrQoL. Methods: In this cross-sectional study, hrQoL of patients after ASO was assessed with the German version of the Short Form-36 (SF-36) and the potential association of specified clinical factors was analyzed. Patients of at least 14 years of age who underwent ASO in our institution from 1983 were considered eligible. Results: Of the 355 questionnaires sent to eligible patients, 261 (73%) were available for analysis. Compared to the reference population, patients who had undergone ASO had a significantly higher score in all subscales of the SF-36 except for vitality ( P < .01). Patients with an implanted pacemaker ( P = .002), patients who required at least one reoperation ( P < .001), and patients currently taking cardiac medication ( P < .004) or oral anticoagulation ( P = .036) had lower physical component scores compared to patients without these factors. Conclusions: Patients’ self-assessed and self-reported hrQoL after ASO (using German version of the Short Form 36) is very good. In this population, hrQoL is influenced by reoperation, the need for a pacemaker, and current cardiac medication or anticoagulant use. The development of strategies designed to mitigate or minimize the requirements for, and/or impact of these factors may lead to better hrQoL in this patient population.

scholarly journals The expanded prostate cancer index composite short form (EPIC-26) for measuring health-related quality of life: content analysis of patients’ spontaneous comments written in survey margins

2021 ◽  
Author(s):  
Anna-Maija Talvitie ◽  
Hanna Ojala ◽  
Teuvo Tammela ◽  
Ilkka Pietilä
Keyword(s):  
Prostate Cancer ◽  
Content Analysis ◽  
Short Form ◽  
Health Related Quality ◽  
Urinary Catheters ◽  
Additional Information ◽  
Response Data ◽  
Related Quality ◽  
Health Related

Abstract Introduction This study investigates comments that prostate cancer patients spontaneously write in the margins of the Expanded Prostate Cancer Index Short Form (EPIC-26) questionnaire. We aim to show the possible barriers that patients face while answering the survey, and to consider how these barriers may affect the response data generated. We investigate the kind of information patients’ comments on EPIC-26 contain, and patients’ motivations to provide this information. We also study why some EPIC domains spark more comments than others. Method We analyzed 28 pages of transcribed comments and four pages of supplementary letters from our survey participants (n = 496). Using inductive content analysis, we generated 10 categories describing the content of participants’ comments, and four themes demonstrating their motives for commenting. The comments regarding each EPIC domain were quantified to discover any differences between domains. Results The sexual domain of EPIC-26 provoked over half of all comments. Patients without recent sexual activity or desire had difficulties answering sexual function questions 8–10. The lack of instructions on whether to take erectile aid use into account when answering erectile function questions led to a diversity of answering strategies. Patients with urinary catheters could not find suitable answer options for questions 1–4. All domains sparked comments containing additional information about experienced symptoms. Conclusion Patients are mainly willing to report their symptoms, but a lack of suitable answer options causes missing data and differing answering strategies in the sexual and urinary domains of EPIC-26, weakening the quality of the response data received.

scholarly journals Health-Related Quality of Life Following Allogeneic Hematopoietic Stem Cell Transplantation

Hematology ◽  
2010 ◽  
Vol 2010 (1) ◽  
pp. 248-254 ◽  
Author(s):  
Margaret Bevans
Keyword(s):  
Quality Of Life ◽  
Stem Cell ◽  
Clinical Practice ◽  
Hematopoietic Stem Cell Transplantation ◽  
Health Related Quality ◽  
Hematopoietic Stem ◽  
Allogeneic Hsct ◽  
Related Quality ◽  
Health Related

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.

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