P06.03 Child, parent, and clinician selection of patient-reported outcome measures to use in pediatric neuro-oncology outpatient follow-up clinics

Abstract BACKGROUND Survivors of childhood brain tumours are at risk of poor health-related quality of life (HRQoL). Appropriate and relevant measures can be used to monitor HRQoL so that timely interventions may be made for issues thus identified. We had previously selected patient-reported outcome measures (PROMs) with good psychometric properties that had emerged as well-suited for this use in two systematic reviews. The aim of the present study was to ascertain the views of families regarding the suitability of the selected measures for use in paediatric neuro-oncology follow-up clinics. These views were then used to inform the choice of PROMs for use on the KLIK PROM portal, a website designed to gather HRQoL information from families. MATERIAL AND METHODS As part of the PROMOTE study, we used a multi-centre, multi-informant, cross-sectional, qualitative methods research design. Using ‘think aloud’ audio-recorded interviews, children aged 8–17 years diagnosed within the previous five years with a brain tumour, off treatment and receiving outpatient care, and their parents, were shown a total of nine PROMs and asked to express their views on which they preferred. Detailed notes were made of all audio-recordings by two independent researchers. The final choice of PROMs to be included on the KLIK PROM portal was agreed through discussion of the PROMs selected by families with an expert panel of clinicians, researchers, and parent representatives. RESULTS 16 children and 17 parents participated and of these 2 children and 2 parents did not express a preference. The Pediatric Quality of Life Inventory (PedsQL) Core module was the most popular among the children and parents with 7/14 (50%) of children selecting it as either their 1st or 2nd choice citing that they liked the questions and felt them to be most relevant to them, and 8/15 (53%) of parents citing that it was easy, quick and simple, the wording was easy, and they liked the questions about emotional, social, and school functioning. The least popular questionnaires, with no participants selecting them as first choices, were the Kidscreen-10 and the Health Utilities Index. The latter 2 were selected only as 2nd or lower choices by 1 child and 3 parents respectively. CONCLUSION The PROMs that were finally selected for the KLIK PROM portal were the parent- and child-report PedsQL-Core measures of HRQoL due to their good psychometric properties, family and clinician preference and perceived relevance to follow-up care, and for clinical utility on the KLIK PROM portal.

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Patient reported outcome measures (PROMs): examination of the psychometric properties of two measures for burden of symptoms and quality of life in patients with depression or anxiety

Nordic Journal of Psychiatry ◽

10.1080/08039488.2018.1451918 ◽

2018 ◽

Vol 72 (4) ◽

pp. 251-258 ◽

Cited By ~ 10

Author(s):

Per Bech ◽

Stephen Fitzgerald Austin ◽

Marianne Engelbrecht Lau

Keyword(s):

Quality Of Life ◽

Psychometric Properties ◽

Outcome Measures ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Patient Reported ◽

Two Measures

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OP27 Patient-Reported Outcome Measures In Carotid Artery Revascularization

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462317001271 ◽

2017 ◽

Vol 33 (S1) ◽

pp. 12-13

Author(s):

Munira Essat ◽

Ahmed Aber ◽

Patrick Phillips ◽

Edith Poku ◽

Helen Buckley Wood ◽

...

Keyword(s):

Quality Of Life ◽

Carotid Artery ◽

Psychometric Properties ◽

Outcome Measures ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Health Measurement ◽

Patient Reported ◽

The Impact

INTRODUCTION:Patient-reported outcome measures (PROMs) provide a way to measure the impact of a disease and its associated treatments on the quality of life from the patients’ perspective. The aim of this review was to identify PROMs that have been developed and/or validated in patients with carotid artery disease (CAD) undergoing revascularization, and to assess their psychometric properties and examine suitability for research and clinical use.METHODS:Eight electronic databases including MEDLINE and CINAHL were searched from inception to May 2015 and updated in the MEDLINE database to February 2017. A two-stage search approach was used to identify studies reporting the development and/or validation of relevant PROMs in patients with CAD undergoing revascularization. Supplementary citation searching and hand-searching reference lists of included studies were also undertaken. The Consensus-based standards for the selection of health measurement instruments (COSMIN) and Oxford criteria were used to assess the methodological quality of the included studies, and the psychometric properties of the PROMs were evaluated using established assessment criteria.RESULTS:Six PROMs, reported in five studies, were identified: 36-Item Short Form Health Survey (SF-36), Euro-QoL-5-Dimension Scale (EQ-5D), Hospital Anxiety and Depression Scale (HADS), Dizziness Handicap Inventory (DHI), Quality of life for CAD scale by Ivanova 2015 and a disease-specific PROM designed by Stolker 2010. The rigour of the psychometric assessment of the PROMs were variable with most only attempting to assess a single psychometric criterion. No study reported evidence on criterion validity and test-retest reliability. The overall psychometric evaluation of all included PROMs was rated as poor.CONCLUSIONS:This review highlighted a lack of evidence in validated PROMs used for patients undergoing carotid artery revascularization. As a result, the development and validation of a new PROM for this patient population is warranted in order to provide data which can supplement traditional clinical outcomes (stroke >30 days post-procedural, myocardial infarction and death), and capture changes in health status and quality of life in patients to help inform treatment decisions.

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Patient reported outcome on endourethrotomy combined with Amplatz dilatation for treatment of incompletely obliterated posterior urethral stricture following pelvic trauma: Validation in the era of urethroplasty

10.1101/2021.07.25.21261072 ◽

2021 ◽

Author(s):

Mohamed Wishahi ◽

Ahmed Mehena

Keyword(s):

Quality Of Life ◽

Sexual Function ◽

Urethral Stricture ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Pelvic Trauma ◽

Cross Sectional ◽

Patient Reported

Introduction: Direct vision internal urethrotomy (DVIU) is gaining revival among urologists, the procedure having the advantages of being minimally invasive as well as keeping continence and sexual function unaffected. The recurrence rate at 12 months was diminished by combination of DVIU with a Amplatz dilatation at the time of the procedure. Objectives are of present work is to present the outcome of the procedure. Materials and methods: This is an observational study with a cross-sectional approach. Patients underwent combined endo-urethrotomy and Amplatz dilation for posterior urethral strictures between February 2015 and January2020 were purposively recruited. We performed a retrospective review of the records of 48 patients who completed 12 months follow-up . Patient-reported outcome measures for urethral stricture surgery (USS-PROMs) and sexual function were assessed at 12 months follow-up questionnaire was used to assess quality of life. The patients in the study filled the questionnaire and returned to the researchers. Correlation between status before and after treatment were analyzed using simple statistical analysis to evaluate the effect of treatment on quality of life. Clinician-driven outcome were uroflowmetry, retrograde urethrogram, and reporting of complications. Results: Mean length of stricture segment was 2 cm (range 1-2.5 cm). At 12 months follow up patients reported very satisfactory. Restenosis that was treated with redo was reported in 2%. Mild stenosis that was treated with Amplatz dilatation was in 3%. Patients reported very satisfactory or satisfactory for USS-PROSMs, sexual function in comparison to pre-trauma status. Conclusions: Endourethrotomy combined with Amplatz dilation is an effective treatment for short segment passable posterior urethral stricture

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

European Heart Journal ◽

10.1093/ehjci/ehaa946.3107 ◽

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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