Abstract:
BACKGROUND:Compliance, palatability, gastrointestinal (GI) symptom, and treatment satisfaction patient- and observer-reported outcome (PRO, ObsRO) measures were developed/modified for patients with transfusion-dependent anemias or myelodysplastic syndrome (MDS) requiring iron chelation therapy (ICT). METHODS:This qualitative cross-sectional observational study used grounded theory data collection and analysis methods and followed PRO/ObsRO development industry guidance. Patients and caregivers of patients with transfusion-dependent anemias or MDS were individually interviewed face-to-face to cognitively debrief the Compliance, Palatability, GI Symptom Diary, and Modified Satisfaction with Iron Chelation Therapy (SICT) instruments presented electronically. Interviews were conducted in sets. Interviews began open-endedly to spontaneously elicit ICT experiences. Item modifications were debriefed during the later interviews. Interviews were audio recorded, transcribed, and coded. Data was analyzed using ATLAS.ti qualitative research software. RESULTS:Twenty-one interviews were completed (Set 1: 5 patients, 6 caregivers; Set 2: 6 patients, 4 caregivers) in 6 US cities. Mean age was 43 years for patients and 9 years for children of caregivers. Conditions requiring ICT use across groups included transfusion-dependent anemias (85.7%) and MDS (14.3%). Concepts spontaneously reported were consistent with instruments debriefed. Interview analysis resulted in PRO and ObsRO versions of each instrument: Compliance (2 items), Palatability (4 items), GI Symptom Diary (6 items), and Modified SICT (PRO = 13, ObsRO = 17 items). CONCLUSION:Qualitative research data from cognitive interviews supports the content validity and relevance of the instruments developed/modified. Quantitative validation of these PRO and ObsRO measures is needed testing for validity, reliability, and responsiveness for future research use with new formulations of oral ICT.
journal_name
Health Qual Life Outcomesjournal_title
Health and quality of life outcomesauthors
Horodniceanu EG,Bal V,Dhatt H,Carter JA,Huang V,Lasch Kdoi
10.1186/s12955-017-0702-0subject
Has Abstractpub_date
2017-06-23 00:00:00pages
129issue
1issn
1477-7525pii
10.1186/s12955-017-0702-0journal_volume
15pub_type
杂志文章abstract:BACKGROUND:NAFLD impacts patient reported outcomes (PROs). Our aim was to assess the impact of NAFLD on patients' HRQOL. METHODS:National Health and Nutrition Examination Survey (NHANES) 2001-2011 data were used to identify adult patients with NAFLD [Fatty Liver Index (FLI) > 60 in absence of other liver disease and e...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-016-0420-z
更新日期:2016-02-09 00:00:00
abstract:BACKGROUND:Pulmonary arterial hypertension (PAH) remains a life-threatening condition, despite modern therapies. We prospectively investigated the therapeutic health-related quality of life (HRQOL) effects of goal-oriented sequential combination therapy based on exercise capacity in patients newly diagnosed with PAH. ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1178-x
更新日期:2019-06-14 00:00:00
abstract:BACKGROUND:Primary care physicians are caring for increasing numbers of persons with comorbid chronic illness. Longitudinal information on health outcomes associated with specific chronic conditions may be particularly relevant in caring for these populations. Our objective was to assess the effect of certain comorbid ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-2-47
更新日期:2004-09-07 00:00:00
abstract:BACKGROUND:The long-term fate of severely injured patients in terms of their quality of life is not well known. Our aim was to assess the quality of life of patients who have suffered moderate to severe trauma and to identify primary factors of long-term quality of life impairment. METHODS:A prospective monocentric st...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-020-01652-1
更新日期:2021-01-08 00:00:00
abstract:BACKGROUND:Spanish is one of the five most spoken languages in the world. There is currently no published Spanish version of the Örebro Musculoskeletal Pain Questionnaire (OMPQ). The aim of the present study is to describe the process of translating the OMPQ into Spanish and to perform an analysis of reliability, inter...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-014-0157-5
更新日期:2014-10-29 00:00:00
abstract:BACKGROUND:The Hirschsprung's disease Anorectal malformation QoL questionnaire (HAQL) is a disease-specific quality of life (QoL) questionnaire for patients with Hirschsprung's disease (HD) or anorectal malformations (ARM). It was originally proposed in Dutch and is currently being translated into other languages to ob...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0599-7
更新日期:2017-01-28 00:00:00
abstract:BACKGROUND:Previous studies have reported that socioeconomically disadvantaged Australians have poorer self-rated dental health (SRDH), are less likely to be insured for dental services and are less likely to have regular dental visits than their more advantaged counterparts. However, less is known about the associatio...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-67
更新日期:2014-05-09 00:00:00
abstract:BACKGROUND:Many previous studies have reported factors that contribute to health-related quality of life (HRQoL) for a single skin disease. However, little is known about generalized factors associated with HRQoL across skin diseases. The objective of this study was to investigate overall HRQoL, and to identify factors...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,多中心研究
doi:10.1186/s12955-020-01542-6
更新日期:2020-09-04 00:00:00
abstract:BACKGROUND:The Pictorial Representation of Illness and Self Measure (PRISM) has been introduced as a visual measure of suffering. We explored the validity of a revised version, the PRISM-RII, in diabetes patients as part of the annual review. METHODS:Participants were 308 adult outpatients with either type 1 or type 2...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-6-104
更新日期:2008-11-27 00:00:00
abstract:BACKGROUND:Though many people with multiple sclerosis (MS) have comorbidities, the use of generic and disease-specific health related quality of life (HRQOL) scales to discriminate the effects of comorbidity has not been established. The utility of these scales to discriminate differences between persons with varying l...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0828-0
更新日期:2017-12-21 00:00:00
abstract:BACKGROUND:Breast cancer is one of the oncological diseases in which health-related quality of life (HRQL) has been most studied. This is mainly due to its high incidence and survival. This paper seeks to: review published research into HRQL among women with breast cancer in Spain; analyse the characteristics of these ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,评审
doi:10.1186/1477-7525-9-3
更新日期:2011-01-14 00:00:00
abstract:BACKGROUND:We investigated the relationship between Body Mass Index (BMI) and health-related quality of life (HRQOL) indicated by baseline health status in elementary school children. METHODS:Data were obtained via parents whose children enrolled in an elementary school, kindergarten to fourth grade, in southern Missi...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-6-77
更新日期:2008-10-09 00:00:00
abstract::The McMaster framework introduced by Kirshner & Guyatt is the dominant paradigm for the development of measures of health status and health-related quality of life (HRQL). The framework defines the functions of such instruments as evaluative, predictive or discriminative. Evaluative instruments are required to be sens...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-6-36
更新日期:2008-05-27 00:00:00
abstract:OBJECTIVES:We assessed health-related quality of life (HRQOL), its associated factors, and examined measurement properties of the EuroQol - 5 Dimensions - 5 Levels (EQ-5D-5L) in HIV/AIDS patients. METHODS:A cross-sectional multi-site survey was conducted in 1016 patients (age: 35.4 ± 7.0 years; 63.8% male) in three ep...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-10-132
更新日期:2012-11-01 00:00:00
abstract:BACKGROUND:To date, reliable and comprehensive health-related quality of life data for patients with relapsed or refractory B-precursor acute lymphoblastic leukemia (ALL) have not been collected in clinical trials of the disease, and no utility studies have been published. The purpose of this study was to define and va...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0377-3
更新日期:2015-11-16 00:00:00
abstract:BACKGROUND:The Functional Assessment of Cancer Therapy (FACT) is one of the most commonly used self-report instruments for evaluation of health-related quality of life in oncology patients. However, cultural considerations necessitate testing of the subscales in different populations. We sought to qualitatively and qua...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-10-124
更新日期:2012-10-03 00:00:00
abstract:BACKGROUND:Patient self reported measures for Health Related Quality of Life (HRQOL) and mental distress are frequently used to evaluate outcome of therapeutic strategies in cardiac patients.Our study aims to describe changes in HRQOL and mental distress after percutaneous coronary intervention (PCI) focusing on tempor...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-11-144
更新日期:2013-08-27 00:00:00
abstract:BACKGROUND:Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe t...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-12-91
更新日期:2014-06-11 00:00:00
abstract:BACKGROUND:To investigate the impact of the gap between subjective and objective social status on health-related quality of life. METHODS:We analyzed data from 12,350 participants aged ≥ 18 years in the Korean Health Panel Survey. Health-related quality of life was measured by EuroQol-Visual analogue scale. Objective ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-015-0319-0
更新日期:2015-08-08 00:00:00
abstract:BACKGROUND:After long term disease free follow up (FUp) patients reconsider quality of life (QOL) outcomes. Aim of this study is assess QoL in prostate cancer patients who are disease-free at least 5 years after radical prostatectomy (RP). METHODS:367 patients treated with RP for clinically localized pCa, without bioc...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-7-94
更新日期:2009-11-13 00:00:00
abstract:BACKGROUND:To generate high-quality evidence, contextually relevant outcome measurement instruments are required. Quality of life evaluation among polio survivors typically involves the use of generic instruments, which are developed and validated among a different groups of people. There is no clear evidence whether t...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,评审
doi:10.1186/s12955-020-01552-4
更新日期:2020-09-21 00:00:00
abstract:BACKGROUND:The purpose of this study is to describe Health-Related Quality of Life (HRQoL) of localized prostate cancer patients in an Active Surveillance (AS) program, and to compare them with those undergoing radical prostatectomy (RP), external-beam radiotherapy (XRT) and brachytherapy (BT). METHODS:Multi-instituti...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章,多中心研究
doi:10.1186/s12955-019-1082-4
更新日期:2019-01-14 00:00:00
abstract:BACKGROUND:Novel oral anticoagulants (NOAC) such as dabigatran, when compared to warfarin, have been shown to potentially reduce the risk of stroke in patients with non-valvular atrial fibrillation (NVAF) together with lower healthcare resource utilization (HCRU) and similar total costs. This study expands on previous ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-017-0705-x
更新日期:2017-06-21 00:00:00
abstract:PURPOSE:To develop an algorithm for mapping the Functional Assessment of Cancer Therapy-Breast (FACT-B) to the 5-level EuroQoL Group's 5-dimension questionnaire (EQ-5D-5L) utility index. METHODS:A survey of 238 breast cancer patients in Singapore was conducted. Models using various regression methods with or without r...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-014-0180-6
更新日期:2014-12-12 00:00:00
abstract:BACKGROUND:Measuring quality of life (QOL) in a population is important for the predictions of health and social care needs. In Pakistan, health related quality of life data exist but there are no quality of life data of general population. In this study, quality of life was assessed among the Pakistani general populat...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-018-1065-x
更新日期:2019-01-14 00:00:00
abstract:BACKGROUND:Although several studies indicate the effects of diabetes type 2 on health-related quality of life (HRQoL) in female subjects, the related impact of the disease on HRQoL in their family members has rarely been the focus of the empirical research. In this study we aim to investigate associations between diabe...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1252-4
更新日期:2019-12-05 00:00:00
abstract:BACKGROUND:Several studies have assessed the psychological benefits of orthodontic treatment; however, the impact of competence on psychological benefits remains unknown. AIMS:To analyze the change of the perception of psychosocial dental impact in a sample of adults undergoing orthodontic treatment (mild/moderate den...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-019-1179-9
更新日期:2019-06-26 00:00:00
abstract:BACKGROUND:The presence of multiple chronic conditions is associated with lower health related quality of life (HRQOL). Disease severity also influences HRQOL. To analyse the effects of all possible combinations of single diseases along with their severity on HRQOL seems cumbersome. Grouping diseases and their severity...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-5-52
更新日期:2007-08-06 00:00:00
abstract:BACKGROUND:Perceived dental health has shown to have a significant predictive effect on overall health perception and life satisfaction. Thus, it seems plausible that Health Related Quality of Life (HRQOL) measures are associated with Oral Health Related Quality of Life (OHRQOL) dimensions in Nepalese context as well. ...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/s12955-020-01512-y
更新日期:2020-07-31 00:00:00
abstract:BACKGROUND:Intensive care patients have, both before and after the ICU stay, a health-related quality of life (HRQOL) that differs from that of the normal population. Studies have described changes in HRQOL in the period from before the ICU stay and up to 12 months after. The aim of this study was to investigate possib...
journal_title:Health and quality of life outcomes
pub_type: 杂志文章
doi:10.1186/1477-7525-1-2
更新日期:2003-03-24 00:00:00