Haematological malignancy: are we measuring what is important to patients? A systematic review of quality of life instruments

© 2018 The Authors. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.The wide range of health‐related quality‐of‐life (HRQoL) instruments used in haematology makes it challenging for haematologists and other care team members in practice to select, use and understand the scoring system and finally interpret the results. The main objectives of this study were to: (a) provide a comprehensive list of quality‐of‐life issues important to patients suffering from haematological malignancies, identified through the literature; (b) provide a list of health‐related quality‐of‐life (HRQoL) instruments used in haematological malignancies in both daily clinical practice and research; and (c) evaluate the relevance and comprehensibility of the identified instruments in haematological malignancies. Systematic literature review of two databases, followed by addition of articles by manual searching, was carried out. The articles focusing on the primary studies, which have used semi‐structured/structured interviews or surveys to identify issues important to HM patients, and other studies describing the results of testing measurement properties, such as reliability, validity and responsiveness of the instruments currently used to evaluate the HRQoL in different HMs, were included. Fifty‐seven studies reported development and validation of 30 HRQoL instruments, which have been used in haematology. Twenty‐four studies were identified using qualitative methods to report HRQoL issues and symptoms from a patient's perspective. No identified instrument captured all the issues identified from the qualitative studies. None of the instruments reviewed appeared to have been developed for use in clinical practice and specifically for patients with HM, except MyPOS. Furthermore, measurement properties were established, largely, in clinical trial scenarios. There is a need for development of a new HRQoL instrument entirely based on involvement of patients with haematological malignancies.Peer reviewe

Dependence of Exchange Bias on Interparticle Interactions in Co/CoO Core/Shell Nanostructures

This article reports the dependence of exchange bias (EB) effect on interparticle interactions in nanocrystalline Co/CoO core/shell structures, synthesized using the conventional sol-gel technique. Analysis via powder X-Ray diffraction (PXRD) studies and transmission electron microscope (TEM) images confirm the presence of crystalline phases of core/shell Co/CoO with average particle size ≈ 18 nm. Volume fraction (φ) is varied (from 20% to 1%) by the introduction of a stoichiometric amount of non-magnetic amorphous silica matrix (SiO2) which leads to a change in interparticle interaction (separation). The influence of exchange and dipolar interactions on the EB effect, caused by the variation in interparticle interaction (separation) is studied for a series of Co/CoO core/shell nanoparticle systems. Studies of thermal variation of magnetization (M−T) and magnetic hysteresis loops (M−H) for the series point towards strong dependence of magnetic properties on dipolar interaction in concentrated assemblies whereas individual nanoparticle response is dominant in isolated nanoparticle systems. The analysis of the EB effect reveals a monotonic increase of coercivity (HC) and EB field (HE) with increasing volume fraction. When the nanoparticles are close enough and the interparticle interaction is significant, collective behavior leads to an increase in the effective antiferromagnetic (AFM) CoO shell thickness which results in high HC and HE. Moreover, in concentrated assemblies, the dipolar field superposes to the local exchange field and enhances the EB effect contributing as an additional source of unidirectional anisotropy

Paper and electronic versions of HM-PRO, a novel patient-reported outcome measure for hematology: an equivalence study.

© 2019 Goswami, Oliva, Ionova et al.Aim:To determine measurement equivalence of paper and electronic application of the hematologi-cal malignancy-patient-reported outcome (HM-PRO), a specific measure for the evaluation of patient-reported outcomes in HMs.Patients & methods:Following International Society of Pharmacoeconomicsand Outcomes Research ePRO Good Research Practice Task Force guidelines, a total of 193 adult patientswith different HMs were recruited into a multicenter prospective study. The paper and the electronic ver-sion of the instrument were completed in the outpatient clinics in a randomized crossover design with a30-min time interval to minimize the learning effect. Those who completed the paper version first, com-pleted the electronic version after 30 min and vice versa. Instrument version and order effects were testedon total score of the two parts of the HM-PRO (Part A: quality of life and Part B: signs & symptoms) in atwo-way ANOVA with patients as random effects. Intraclass correlation coefficients (95% CI) and Spear-man’s rank correlation coefficients were used to evaluate test–retest reliability and reproducibility. Theeffects of instrument version and order were tested on total score of the two parts of HM-PRO.Results:The questionnaire version and administration order effects were not significant at the 5% level. Therewere no interactions found between these two factors for HM-PRO (Part A [quality of life]; p=0.95); and(part B [signs and symptoms]; p=0.72]. Spearman’s rank correlation coefficients were greater than 0.9, andintraclass correlation coefficients ranged from 0.94 to 0.98; furthermore, the scores were not statisticallydifferent between the two versions, showing acceptable reliability indexes. Noteworthy, the differencebetween the completion time for both paper (mean=6:38 min) and electronic version (mean=7:29 min)was not statistically significant (n=100; p=0.11). Patients did not report any difficulty in completing theelectronic version during cognitive interviews and were able to understand and respond spontaneously.Conclusion:Measurement equivalence has been demonstrated for the paper and electronic applicationof the HM-PRO.Peer reviewe

Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Oxford 2017: Advances in Patient Reported Outcomes Research

A33-Effects of Out-of-Pocket (OOP) Payments and Financial Distress on Quality of Life (QoL) of People with Parkinson’s (PwP) and their Carer

Dependence of Exchange Bias on Interparticle Interactions in Co/CoO Core/Shell Nanostructures

This article reports the dependence of exchange bias (EB) effect on interparticle interactions in nanocrystalline Co/CoO core/shell structures, synthesized using the conventional sol-gel technique. Analysis via powder X-Ray diffraction (PXRD) studies and transmission electron microscope (TEM) images confirm the presence of crystalline phases of core/shell Co/CoO with average particle size ≈ 18 nm. Volume fraction (φ) is varied (from 20% to 1%) by the introduction of a stoichiometric amount of non-magnetic amorphous silica matrix (SiO2) which leads to a change in interparticle interaction (separation). The influence of exchange and dipolar interactions on the EB effect, caused by the variation in interparticle interaction (separation) is studied for a series of Co/CoO core/shell nanoparticle systems. Studies of thermal variation of magnetization (M−T) and magnetic hysteresis loops (M−H) for the series point towards strong dependence of magnetic properties on dipolar interaction in concentrated assemblies whereas individual nanoparticle response is dominant in isolated nanoparticle systems. The analysis of the EB effect reveals a monotonic increase of coercivity (HC) and EB field (HE) with increasing volume fraction. When the nanoparticles are close enough and the interparticle interaction is significant, collective behavior leads to an increase in the effective antiferromagnetic (AFM) CoO shell thickness which results in high HC and HE. Moreover, in concentrated assemblies, the dipolar field superposes to the local exchange field and enhances the EB effect contributing as an additional source of unidirectional anisotropy

Patient Experience of Sjögren’s Disease and its Multifaceted Impact on Patients’ Lives

Abstract Introduction The symptoms associated with Sjögren’s disease (Sjögren’s) are well-documented from the physician’s perspective. However, from the patient’s perspective, there is limited information on symptoms and their impact on health-related quality of life (HRQoL). This study aimed to provide an expanded understanding of patients’ experience of Sjögren’s and how symptoms impact HRQoL using a novel multi-method social media listening (SML) approach. Methods A total of 26,950 social media posts with relevant content on Sjögren’s posted by social media users from the USA, Canada, Australia, UK, France, Germany, Italy, Spain and China were analysed using an artificial intelligence natural language processing tool to explore patient conversations. Symptoms by level of impact on patients were characterised based on ‘commonness’ and ‘bothersomeness’. Applied concept association analysis was used to assess relationships between symptom domains and impact domains. A qualitative framework was applied to explore words and phrases patients use to describe symptoms and their impacts. Results Five of the identified symptom domains were very impactful: Pain; Dry Mouth and Throat; Fatigue, Energy and Sleep; Emotional Balance; and Dry Eye. The symptom domains Pain and Dry Mouth and Throat were the most common, while those of Emotional Balance and Fatigue, Energy and Sleep were the most bothersome. Symptom domains most closely associated with four HRQoL impact domains were Fatigue, Energy and Sleep, Dry Mouth and Throat and Dry Eye with Daily Functioning; Fatigue, Energy and Sleep with Financial Health; Emotional Balance with Psychological Wellbeing and Gynaecological Issues with Social Wellbeing. Conclusion The results of this SML study show that Sjögren's affects diverse aspects of patients’ lives, with symptoms extending beyond dry eyes and mouth and impacting daily living and functioning. Because symptoms may affect patients differently, these results highlight the importance of measuring impact on HRQoL to assess patient outcomes and treatment options in routine clinical practice and clinical trials