scholarly journals Identifying Salient Quality of Life Domains in Patients Living with High-Risk MDS and AML

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4982-4982
Author(s):  
Anthony J. Messina ◽  
Sabrina Figueiredo ◽  
John H Powers ◽  
Mary A Corcoran
Keyword(s):  
Quality Of Life ◽  
Conceptual Model ◽  
Treatment Satisfaction ◽  
Research Study ◽  
Patient Reported Outcome ◽  
Individual Factors ◽  
Life Domains ◽  
Patient Interviews ◽  
Patient Reported

Abstract Background Valuing patients as the experts in their experience, how they live with myelodysplastic disease, and how to reframe assessments of efficacy, patient-reported outcomes (PROs) can complement traditional measurements of response. Therefore, when used correctly, PROs serve as a valued instrument to assess a patient's Quality of Survival (QoS) throughout the course of their treatment. This study aimed to address the need for improved quality of life measurement in MDS and AML research requires identifying instruments that are appropriate for this population and ones that accurately represent the goals, needs, and concerns of these patients. Therefore research efforts should be directed to providing confirmatory data of the suitability for utilizing existing patient-reported outcome measurements (PROMs) for this population or identify the need to develop and use highly sensitive disease-specific measurements when evaluating new treatments. Identification of representative, influential, patient-reported quality of life domains first needed to be established in order to direct discovery of appropriate PROMs for this population in this two part research study (part-one: patient interviews/surveys, part two: Delphi panel/identification of appropriate PROMs [forthcoming]). Methods Between January and June 2021, 17 participants (AML, n = 8; HR-MDS, n = 9) were enrolled in an IRB-research study participating in concept-elicitation, semistructured interviews and surveys aimed to identify the lived experience of those being treated for HR-MDS and AML. An interpretive descriptive methodology was chosen to produce coherent conceptual descriptions aimed to expose thematic patterns and commonalities that characterize individuals with HR-MDS and AML. Using these insights, a conceptual model was derived to establish the basis for PROM content validity evaluation and to improve the accuracy of the captured quality of life measurements of this patient population. Results Seven (7) patient-reported themes emerged from qualitative analysis; social wellbeing, physical wellbeing, emotional wellbeing, management of side effects, treatment satisfaction, autonomy, and individual factors. Treatment Satisfaction, Autonomy, and Individual Factors (such as education, financial wellbeing, incoming treatment goal, health status, outlook, and prognosis) were found to be the most salient related to quality of life and overall wellbeing. The conceptual model highlights the main areas of impact and the relationships among concepts. Significant overlap was observed between the influential domains identified amongst those with HR-MDS and AML. Surveys, which were administered after patient interviews, were analyzed for consistency, reliability (α=0.8405), and variable correlation. Conclusion A clear understanding of the influential health-related quality of life domains that make up the foundation of this patient population's experience has proven fundamental in the process of identification of appropriate PROMs to measure quality of life. The patient-reported influence treatment satisfaction (confidence in treatment/provider, quality of care, compassion received, provided support, knowledge of treatment, burden of care, information of prognosis, etc) has on a patient's quality of life may lead to a more holistic approach to patient-reported outcome item-banks and instrument selection. The importance of the maintenance of autonomy during and after treatment was apparent in the reported anxiety associated with the loss of the ability of self-care, and independence. Additionally, the absence of divergent themes amongst those with HR-MDS and AML further adds to the evidence that these sub-populations share similar patient experiences. Disclosures Powers: Arrevus, Celularity, Corbus, DaVolterra, Eicos, Eli Lilly, Evofem, Eyecheck, Fuji, Gilead, GSK group of companies, Johnson & Johnson, Microbion, Mustang, OPKO, Otsuka, Romark, Shiniogi, Vir: Consultancy.

Evaluation of Ankylosing Spondylitis Quality of Life (EASi-QoL): Reliability and Validity of a New Patient-reported Outcome Measure

2010 ◽  
Vol 37 (10) ◽  
pp. 2100-2109 ◽  
Author(s):  
KIRSTIE L. HAYWOOD ◽  
ANDREW M. GARRATT ◽  
KELVIN P. JORDAN ◽  
EMMA L. HEALEY ◽  
JONATHAN C. PACKHAM
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Postal Survey ◽  
Patient Reported Outcome Measure ◽  
Patient Interviews ◽  
Patient Reported ◽  
Test Retest Reliability

Objective.There is currently no universally accepted measure of quality of life in ankylosing spondylitis (AS). Our objective was to develop and evaluate a patient-reported outcome measure of quality of life in AS, EASi-QoL.Methods.We used patient interviews, a literature review, and completion of an individualized measure of AS quality of life during clinic-based and pilot surveys to derive questionnaire content. Classical and modern psychometrics were then used to evaluate the questionnaire using data from a large UK-based postal survey of 1000 patients with AS.Results.Data analysis from the interviews and clinic-based and postal surveys produced a 57-item self-completed questionnaire. Fifteen items were removed as a result of patient interviews and the pilot survey. In total, 612 (64.0%) patients responded to the main postal survey. After assessment of data quality, confirmatory factor analysis, and Rasch analysis, 20 items were found to contribute to 4 domains of AS-related quality of life: physical function, disease activity, emotional well-being, and social participation. Item-total correlations ranged from 0.66 to 0.84. Cronbach’s alpha and test-retest reliability estimates were 0.88–0.92 and 0.88–0.93, respectively. Confirmed hypothesized correlations with the AS Quality of Life questionnaire, the Bath AS Disease Activity Index, Bath AS Functional Index, SF-36, EQ-5D, and the Hospital Anxiety and Depression Scale were evidence for the construct validity of the EASi-QoL.Conclusion.The EASi-QoL has good evidence of data quality, internal reliability, test-retest reliability, and content and construct validity, and should be considered for use with patients in routine practice settings and in evaluative studies including clinical trials. Measurement responsiveness and minimal important change are currently being assessed.

scholarly journals P116 Development of a new patient-reported outcome measure for patients with complex cryptoglandular fistulas

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S208-S209
Author(s):  
J McCurdy ◽  
P Crooks ◽  
C Gwaltney ◽  
R Krupnick ◽  
K A Cadogan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Conceptual Model ◽  
Rating Scale ◽  
Daily Life ◽  
Patient Reported Outcome ◽  
Cognitive Debriefing ◽  
Item Pool ◽  
Patient Reported

Abstract Background Complex cryptoglandular fistulas (CCF) arise from infected anal glands and are often associated with substantial morbidity and healthcare utilization. Standarized patient-reported outcome measures (PROMs) for CCF are lacking. Thus, we aimed to develop a disease-specific PROM to assess the burden of symptoms and their impact on daily life in patients with CCF. Methods To develop a conceptual model, a targeted literature review was conducted to identify symptoms and impacts on daily life associated with CCF. Existing PROMs relating to anal fistulas were also sought. Semi-structured interviews with colorectal surgeons (n=5) assessed clinical perspectives on patient experience of CCF. A draft item pool was developed based on the refined conceptual model and using the Quality of Life in Patients with Anal Fistula Questionnaire as a reference. The tool was refined through concept elicitation interviews on the symptoms and impacts of CCF, and cognitive debriefing on the interpretation, understanding and response to each item. Interviews were conducted until concept saturation was achieved and patient feedback suggested no further refinements were required. Results The literature review identified discharge, pain, faecal incontinence and bleeding as the most prevalent symptoms, and embarrassment as the most prevalent impact on daily life. Results from surgeon interviews were then used to revise the initial conceptual model. Twenty US adults (60% female; mean age, 49 years) with clinically confirmed CCF participated in interviews (four waves of n=5). Patients identified 10 salient symptoms and 11 salient impacts on daily life (salient defined as mention by ≥50% of patients and mean disturbance rating ≥5 on a 10-point scale). The final conceptual model included the main symptoms and treatment-related effects, and impacts on daily life. The draft item pool was refined, resulting in a final PROM consisting of 14 items (covering frequency and severity) relating to symptom domains – discharge, incontinence, pain, irritation, odour, abscess – and 6 items relating to health-related quality of life domains – functional, physical, psychological, social health. The PROM features a 7-day recall period, with responses mostly given on a 5-point verbal rating scale. Cognitive debriefing confirmed that the PROM was clear, easy to understand and relevant to patients’ experiences. Conclusion The 20-item CCF questionnaire (CCFQ-20) is a new PROM that has been developed and tested for content validity, following expert guidance and regulatory best practices. It addresses a comprehensive set of salient symptoms and impacts experienced by patients with CCF. Psychometric testing is required to fully evaluate this PROM. Sponsor: Takeda Pharmaceuticals USA, Inc.

Adaptation and cross-cultural validation of the Spanish version of the Thyroid-Related Quality-of-Life Patient-Reported Outcome (ThyPRO) questionnaire

2018 ◽  
Author(s):  
Lleo Ana Maria Gonzalez ◽  
Mauro Boronat Cortes ◽  
Ulla Feldt-Rasmussen ◽  
Carlos Rodriguez Perez ◽  
AEse Krogh Rasmussen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Spanish Version ◽  
Patient Reported ◽  
Related Quality ◽  
Cultural Validation

scholarly journals An assessment of the use of patient reported outcome measurements (PROMs) in cancers of the pelvic abdominal cavity: identifying oncologic benefit and an evidence-practice gap in routine clinical practice

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Miss Charlotte L. Moss ◽  
Ajay Aggarwal ◽  
Asad Qureshi ◽  
Benjamin Taylor ◽  
Teresa Guerrero-Urbano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Abdominal Cavity ◽  
Patient Reported Outcome ◽  
Oncologic Outcomes ◽  
Review Of The Literature ◽  
Outcome Measurements ◽  
Patient Reported ◽  
Cancer Setting

Abstract Background Patient reported outcome measurements (PROMs) are emerging as an important component of patient management in the cancer setting, providing broad perspectives on patients’ quality of life and experience. The use of PROMs is, however, generally limited to the context of randomised control trials, as healthcare services are challenged to sustain high quality of care whilst facing increasing demand and financial shortfalls. We performed a systematic review of the literature to identify any oncological benefit of using PROMs and investigate the wider impact on patient experience, in cancers of the pelvic abdominal cavity specifically. Methods A systematic review of the literature was conducted using MEDLINE (Pubmed) and Ovid Gateway (Embase and Ovid) until April 2020. Studies investigating the oncological outcomes of PROMs were deemed suitable for inclusion. Results A total of 21 studies were included from 2167 screened articles. Various domains of quality of life (QoL) were identified as potential prognosticators for oncologic outcomes in cancers of the pelvic abdominal cavity, independent of other clinicopathological features of disease: 3 studies identified global QoL as a prognostic factor, 6 studies identified physical and role functioning, and 2 studies highlighted fatigue. In addition to improved outcomes, a number of included studies also reported that the use of PROMs enhanced both patient-clinician communication and patient satisfaction with care in the clinical setting. Conclusions This review highlights the necessity of routine collection of PROMs within the pelvic abdominal cancer setting to improve patient quality of life and outcomes.

Significance of patient-reported outcomes for occupational resumption and quality of life after cardiac rehabilitation

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
A Salzwedel ◽  
I Koran ◽  
E Langheim ◽  
A Schlitt ◽  
J Nothroff ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Performance ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Funding Source ◽  
Patient Reported ◽  
Returning To Work

Abstract Introduction Comprehensive cardiac rehabilitation (CR) programs based on the bio-psycho-social approach of the international classification of functioning and disease are carried out to achieve improved prognosis, superior health-related quality of life (HRQL) and social integration. We aimed to identify predictors of returning to work (RTW) and HRQL among cardiovascular risk factors and physical performance as well as patient-reported outcome measures (PROMs) modifiable during CR. Methods We designed a prospective observational multi-center study and enrolled 1,586 patients (2017/18) in 12 German rehabilitation centers regardless of their primary allocation diagnoses (e.g. acute myocardial infarction (AMI), coronary artery bypass grafting (CABG), coronary artery disease (CAD), valvular disease). Besides general data (e.g. age, gender, diagnoses), parameters of risk factor management (e.g. smoking, lipid profile, hypertension, lifestyle change motivation), physical performance (e.g. maximum exercise capacity, endurance training load, 6-min walking distance), and PROMs (e.g. depression, heart-focused anxiety, HRQL, subjective well-being, somatic and mental health, pain, general self-efficacy, pension desire as well as self-assessment of occupational prognosis using several questionnaires) were documented at CR admission and discharge. 6 months after discharge, status of RTW and HRQL (SF-12) were captured by a follow-up (FU) survey and analyzed in multivariable regression models with multiple imputation of missing values. Results Out of the study participants, 1,262 patients (54±7 years, 77% men) responded to the follow-up survey and could be analyzed regarding the outcome parameters. Most of them were assigned to CR primarily due to AMI (40%) or CAD without myocardial infarction (18%), followed by heart valve diseases in 12% of patients and CABG (8%). 864 patients (69%) returned to work within the follow-up period. Pension desire, negative self-assessed occupational prognosis, heart-focussed anxiety, major life events, smoking and heart failure were negatively associated with RTW, while higher endurance training load, HRQL and work stress were positively associated (Figure 1). HRQL after 6 months was determined more by PROMs (e.g. pension desire, heart-focused anxiety, physical/mental HRQL in SF-12, physical/mental health in indicators of rehab-status questionnaire (IRES-24), stress, well-being in the World Health Organization well-being index and self-efficacy expectations) than by clinical parameters or physical performance. Conclusions Patient-reported outcome measures predominantly influenced RTW and HRQL in heart-disease patients, whereas patients' pension desire and heart-focussed anxiety had a dominant impact on all investigated endpoints. Therefore, the multi-component CR approach focussing on psychosocial support is crucial for subjective health prognosis and occupational resumption. Figure 1. Predictors of returning to work Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): German pension insurance

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