scholarly journals Eliciting the Impact of Digital Consulting for Young People Living With Long-Term Conditions (LYNC Study): Cognitive Interviews to Assess the Face and Content Validity of Two Patient-Reported Outcome Measures

2018 ◽  
Vol 20 (10) ◽  
pp. e268 ◽  
Author(s):  
Jackie Sturt ◽  
Thandiwe Rebecca Dliwayo ◽  
Vera Forjaz ◽  
Kathryn Hamilton ◽  
Carol Bryce ◽  
...  
Keyword(s):  
Young People ◽  
Content Validity ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Interviews ◽  
Long Term Conditions ◽  
Patient Reported ◽  
The Face ◽  
The Impact

scholarly journals Eliciting the impact of digital consulting for young people living with long term conditions (LYNC study): which Patient Reported Outcome Measure? (Preprint)

2018 ◽  
Author(s):  
Jackie Sturt ◽  
Rebecca Dliwayo ◽  
Vera Forjaz ◽  
Kathryn Hamilton ◽  
Carol Bryce ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
Patient Reported Outcome ◽  
Clinical Psychologist ◽  
Long Term Conditions ◽  
Face To Face ◽  
Scoping Reviews ◽  
Patient Reported ◽  
The Impact

BACKGROUND Digital consulting e.g. email, text and skype is increasingly offered to young people accessing specialist care for long term conditions. No patient reported outcome measures (PROM) have been evaluated for assessing outcomes of digital consulting. Systematic and scoping reviews, alongside patient involvement revealed two candidate PROMs for this purpose, the Patient Activation Measure (PAM) and the Physician’s Humanistic Behaviours Questionnaire (PHBQ). PAM measures knowledge, beliefs and skills that enable people to manage their long term condition. The PHBQ measures the extent to which behaviours that are important to patients in their physician-patient interactions are present. OBJECTIVE To explore i) whether the PAM and the PHBQ elicit important outcomes of digital consulting ii) whether the PROMs can isolate the digital consultation component of care. METHODS Participants were drawn from five clinics providing specialist NHS care to 16-24yrs olds with long term health conditions participating in the wider LYNC study. Fourteen people were convenience sampled and consented to have a cognitive interview in this sub-study. Seven participants were young people with either inflammatory bowel disease, cystic fibrosis or cancer. Seven clinicians were clinical psychologist, two nurses, three consultants and a community youth worker practising in Cancer, Diabetes, Cystic Fibrosis and Liver disease. Cognitive interviews were transcribed and analysed and a spread sheet recorded participants’ PROM item appraisals. Illustrative quotes were extracted verbatim from the interviews for all participants. RESULTS Young people found 10 of the PAM 13 items to be relevant to digital consulting and fewer of the additional PAM 22 items. They were only able to provide a spontaneous examples of digital consulting for 50% of the 22 items. Four of the 6 clinicians appraised 12 of the PAM 13 items and 19 of the PAM 22 items to be relevant to evaluating digital consulting and articulated operationalisation of the items with reference to their own digital consulting practice with greater ease than the young people. Appraising the PHBQ, in 14 of the 25 items (56%) 2/3rds of young people’s appraisals offered digital consulting examples with ease suggesting that the young people can detect and discern humanistic clinician behaviours via digital as well as face to face communication channels. Seventeen of the 25 items (68%) were appraised as relevant by the young people. This finding was mirrored in the clinician appraisals. Both young people and clinicians found the research task complex. Young participants required considerably more researcher prompting to illicit examples related to digital consulting rather than their face to face care. CONCLUSIONS The PAM and the PHBQ have satisfactory face and content validity for evaluating digital consulting to warrant proceeding to psychometric evaluation. Completion instructions require revision to differentiate between digital and face to face consultations.

scholarly journals The routine collection of patient-reported outcome measures (PROMs) for long-term conditions in primary care: a cohort survey

BMJ Open ◽  
2014 ◽  
Vol 4 (2) ◽  
pp. e003968 ◽  
Author(s):  
Michele Peters ◽  
Helen Crocker ◽  
Crispin Jenkinson ◽  
Helen Doll ◽  
Ray Fitzpatrick
Keyword(s):  
Primary Care ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Long Term Conditions ◽  
Patient Reported

scholarly journals The suitability of patient-reported outcome measures used to assess the impact of hypoglycaemia on quality of life in people with diabetes: a systematic review using COSMIN methods

Diabetologia ◽  
2021 ◽  
Author(s):  
Jill Carlton ◽  
Joanna Leaviss ◽  
Frans Pouwer ◽  
Christel Hendrieckx ◽  
Melanie M. Broadley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Content Validity ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Structural Validity ◽  
Patient Reported ◽  
The Impact

Abstract Aims/hypothesis It is generally accepted that hypoglycaemia can negatively impact the quality of life (QoL) of people living with diabetes. However, the suitability of patient-reported outcome measures (PROMs) used to assess this impact is unclear. The aim of this systematic review was to identify PROMs used to assess the impact of hypoglycaemia on QoL and examine their quality and psychometric properties. Methods Systematic searches (MEDLINE, EMBASE, PsycINFO, CINAHL and The Cochrane Library databases) were undertaken to identify published articles reporting on the development or validation of hypoglycaemia-specific PROMs used to assess the impact of hypoglycaemia on QoL (or domains of QoL) in adults with diabetes. A protocol was developed and registered with PROSPERO (registration no. CRD42019125153). Studies were assessed for inclusion at title/abstract stage by one reviewer. Full-text articles were scrutinised where considered relevant or potentially relevant or where doubt existed. Twenty per cent of articles were assessed by a second reviewer. PROMS were evaluated, according to COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines, and data were extracted independently by two reviewers against COSMIN criteria. Assessment of each PROM’s content validity included reviewer ratings (N = 16) of relevance, comprehensiveness and comprehensibility: by researchers (n = 6); clinicians (n = 6); and adults with diabetes (n = 4). Results Of the 214 PROMs used to assess the impact of hypoglycaemia on QoL (or domains of QoL), seven hypoglycaemia-specific PROMS were identified and subjected to full evaluation: the Fear of Hypoglycemia 15-item scale; the Hypoglycemia Fear Survey; the Hypoglycemia Fear Survey version II; the Hypoglycemia Fear Survey-II short-form; the Hypoglycemic Attitudes and Behavior Scale; the Hypoglycemic Confidence Scale; and the QoLHYPO questionnaire. Content validity was rated as ‘inconsistent’, with most as ‘(very) low’ quality, while structural validity was deemed ‘unsatisfactory’. Other measurement properties (e.g. reliability) varied, and evidence gaps were apparent across all PROMs. None of the identified studies addressed cross-cultural validity or measurement error. Criterion validity and responsiveness were not assessed due to the lack of a ‘gold standard’ measure of the impact of hypoglycaemia on QoL against which to compare the PROMS. Conclusions/interpretation None of the hypoglycaemia-specific PROMs identified had sufficient evidence to demonstrate satisfactory validity, reliability and responsiveness. All were limited in terms of content and structural validity, which restricts their utility for assessing the impact of hypoglycaemia on QoL in the clinic or research setting. Further research is needed to address the content validity of existing PROMs, or the development of new PROM(s), for the purpose of assessing the impact of hypoglycaemia on QoL. Prospero registration CRD42019125153 Graphical abstract

scholarly journals Applying a framework to assess the impact of cardiovascular outcomes improvement research

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Mitchell N. Sarkies ◽  
Suzanne Robinson ◽  
Tom Briffa ◽  
Stephen J. Duffy ◽  
Mark Nelson ◽  
...  
Keyword(s):  
Medical Research ◽  
Research Impact ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cardiovascular Outcomes ◽  
Research Centre ◽  
Patient Reported ◽  
The Impact ◽  
Research Domain

Abstract Background Health and medical research funding agencies are increasingly interested in measuring the impact of funded research. We present a research impact case study for the first four years of an Australian National Health and Medical Research Council funded Centre of Research Excellence in Cardiovascular Outcomes Improvement (2016–2020). The primary aim of this paper was to explore the application of a research impact matrix to assess the impact of cardiovascular outcomes improvement research. Methods We applied a research impact matrix developed from a systematic review of existing methodological frameworks used to measure research impact. This impact matrix was used as a bespoke tool to identify and understand various research impacts over different time frames. Data sources included a review of existing internal documentation from the research centre and publicly available information sources, informal iterative discussions with 10 centre investigators, and confirmation of information from centre grant and scholarship recipients. Results By July 2019, the impact on the short-term research domain category included over 41 direct publications, which were cited over 87 times (median journal impact factor of 2.84). There were over 61 conference presentations, seven PhD candidacies, five new academic collaborations, and six new database linkages conducted. The impact on the mid-term research domain category involved contributions towards the development of a national cardiac registry, cardiovascular guidelines, application for a Medicare Benefits Schedule reimbursement item number, introduction of patient-reported outcome measures into several databases, and the establishment of nine new industry collaborations. Evidence of long-term impacts were described as the development and use of contemporary management for aortic stenosis, a cardiovascular risk prediction model and prevention targets in several data registries, and the establishment of cost-effectiveness for stenting compared to surgery. Conclusions We considered the research impact matrix a feasible tool to identify evidence of academic and policy impact in the short- to midterm; however, we experienced challenges in capturing long-term impacts. Cost containment and broader economic impacts represented another difficult area of impact to measure.

Optimizing electronic capture of patient-reported outcome measures in oncology clinical trials: lessons learned from a qualitative study

2020 ◽  
Vol 9 (17) ◽  
pp. 1195-1204
Author(s):  
Florence D Mowlem ◽  
Brad Sanderson ◽  
Jill V Platko ◽  
Bill Byrom
Keyword(s):  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Lessons Learned ◽  
Structured Interviews ◽  
Patient Reported ◽  
Oncology Clinical Trials ◽  
Anticancer Treatment ◽  
Fit For Purpose ◽  
The Impact ◽  
Electronic Implementation

Aim: To understand the impact of anticancer treatment on oncology patients’ ability to use electronic solutions for completing patient-reported outcomes (ePRO). Materials & methods: Semi-structured interviews were conducted with seven individuals who had experienced a cancer diagnosis and treatment. Results: Participants reported that the following would impact the ability to interact with an ePRO solution: peripheral neuropathy of the hands (4/7), fatigue and/or concentration and memory issues (6/7), where they are in a treatment cycle (5/7). Approaches to improve usability included: larger, well-spaced buttons to deal with finger numbness, the ability to pause a survey and complete at a later point and presenting the recall period with every question to reduce reliance on memory. Conclusion: Symptoms associated with cancers and anticancer treatments can impact the use of technologies. The recommendations for optimizing the electronic implementation of patient-reported outcome instruments in this population provides the potential to improve data quality in oncology trials and places patient needs at the forefront to ensure ‘fit-for-purpose’ solutions.

scholarly journals Patient-Reported Outcome Measures for Post-mastectomy Breast Reconstruction: A Systematic Review of Development and Measurement Properties

2020 ◽  
Vol 28 (1) ◽  
pp. 386-404 ◽  
Author(s):  
C. F. Davies ◽  
R. Macefield ◽  
K. Avery ◽  
J. M. Blazeby ◽  
S. Potter
Keyword(s):  
Systematic Review ◽  
Breast Reconstruction ◽  
Content Validity ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Future Studies ◽  
Patient Reported ◽  
Eortc Qlq

Abstract Background Breast reconstruction (BR) is performed to improve outcomes for patients undergoing mastectomy. A recently developed core outcome set for BR includes six patient-reported outcomes that should be measured and reported in all future studies. It is vital that any instrument used to measure these outcomes as part of a core measurement set be robustly developed and validated so data are reliable and accurate. The aim of this systematic review is to evaluate the development and measurement properties of existing BR patient-reported outcome measures (PROMs) to inform instrument selection for future studies. Methods A PRISMA-compliant systematic review of development and validation studies of BR PROMs was conducted to assess their measurement properties. PROMs with adequate content validity were assessed using three steps: (1) the methodological quality of each identified study was assessed using the COSMIN Risk of Bias checklist; (2) criteria were applied for assessing good measurement properties; and (3) evidence was summarized and the quality of evidence assessed using a modified GRADE approach. Results Fourteen articles reported the development and measurement properties of six PROMs. Of these, only three (BREAST-Q, BRECON-31, and EORTC QLQ-BRECON-23) were considered to have adequate content validity and proceeded to full evaluation. This showed that all three PROMs had been robustly developed and validated and demonstrated adequate quality. Conclusions BREAST-Q, BRECON-31, and EORTC QLQ-BRECON-23 have been well-developed and demonstrate adequate measurement properties. Work with key stakeholders is now needed to generate consensus regarding which PROM should be recommended for inclusion in a core measurement set.

scholarly journals Patient-reported outcome measures in community-acquired pneumonia: a systematic review of application and content validity

2019 ◽  
Vol 6 (1) ◽  
pp. e000398 ◽  
Author(s):  
Melanie Lloyd ◽  
Emily Callander ◽  
Amalia Karahalios ◽  
Lucy Desmond ◽  
Harin Karunajeewa
Keyword(s):  
Outcome Measures ◽  
Content Validity ◽  
Short Form ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Community Acquired Pneumonia ◽  
Current Evidence ◽  
Measurement Instruments ◽  
Health Measurement ◽  
Patient Reported

IntroductionPatient-reported outcome measures (PROMs) are a vital component of patient-centred care. Community-acquired pneumonia (CAP) is a significant contributor to morbidity, mortality and health service costs globally, but there is a lack of consensus regarding PROMs for this condition.MethodsWe searched MEDLINE, EMBASE and Cochrane Collaboration for studies, both interventional and observational, of adult recovery from CAP that applied at least one validated PROM instrument and were published before 31 December 2017. The full text of included studies was examined and data collected on study design, PROM instruments applied, constructs examined and the demographic characteristics of the populations measured. For all CAP-specific PROM instruments identified, content validity was assessed using the COnsensus based Standards for selection of health Measurement INstruments guidelines (COSMIN).ResultsForty-two articles met the inclusion criteria and applied a total of 17 different PROM instruments including five (30%) classified as CAP specific, six (35%) as generic and six (35%) that measured functional performance or were specific to another disease. The 36-Item Short Form Survey (SF-36) was the most commonly used instrument (15 articles). Only one of 11 (9%) patient cohorts assessed using a CAP-specific instrument had a mean age ≥70 years. The CAP-Sym and CAP-BIQ questionnaires had sufficient content validity, though the quality of evidence for all CAP-specific instruments was rated as very low to low.DiscussionPROM instruments used to measure recovery from CAP are inconsistent in constructs measured and have frequently been developed and validated in highly selective patient samples that are not fully representative of the hospitalised CAP population. The overall content validity of all available CAP-specific instruments is unclear, particularly in the context of elderly hospitalised populations. Based on current evidence, generic health instruments are likely to be of greater value for measuring recovery from CAP in this group.

FRI0562 THE PERSPECTIVE OF YOUNG PEOPLE WITH INFLAMMATORY ARTHRITIS ON PATIENT REPORTED OUTCOME MEASURES: RESULTS OF A EUROPE-WIDE SURVEY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 883-883
Author(s):  
A. Alunno ◽  
E. Mosor ◽  
T. Stamm ◽  
P. Studenic
Keyword(s):  
Young People ◽  
Qualitative Study ◽  
Personal Experience ◽  
Large Scale ◽  
Young Patients ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Research Support ◽  
Patient Reported

Background:Although patient-reported outcome measures (PROMs) are widely used in clinical practice and research, it is unclear if these instruments adequately cover the perspective of young people (18-35 years) with inflammatory arthritis (IA). We recently performed focus groups on PROMs with 53 young IA patients from 4 European countries, but the perspective of these patients has never been explored on a large scale.Objectives:To explore personal experience, opinions and beliefs of young people with IA across Europe concerning PROMs content, characteristics and ways of administration in order to inform EULAR points to consider (PtC) for including the perspective of young patients with IA into PROMs.Methods:Based on the results of our previous qualitative study, a task force including patients, rheumatologists and health professionals developed an online survey. The survey covered personal experience, preferences and opinions concerning PROMs. After being pilot tested and revised accordingly, the survey was distributed through the EULAR people with arthritis and rheumatism in Europe (PARE), Young PARE networks and the Emerging EULAR Network (EMEUNET).Results:547 people (88% females) from 29 countries aged 18-35 years with a diagnosis of juvenile idiopathic arthritis, rheumatoid arthritis, Still’s disease, psoriatic arthritis or spondyloarthritis completed the survey (Figure 1). Thirty-seven percent of respondents reported they never filled a PROM. A North-South and West-East Europe gradient was observed (30.4% vs 56.3% and 25.5% vs 58.8% respectively). Figure 2 outlines key findings of our survey. Among respondents having filled PROMs (n=313), two thirds perceived their access to PROM results useful for self-management of their health. Discomfort while filling PROMs was an issue for nearly half of the respondents, as questions were perceived as scaring or not relevant. This discomfort, the fear of judgement, or inadequate assessed time frames were major reasons for difficulties in translating the health experience into a rating scale. Still 75% use their own experience in the past as reference. Among several reasons, people scored differently from what they felt to emphasize how much better or worse they felt from previous assessment. Concerning preferences of numerical rating scales (NRS) or visual analogue scales (VAS) explored in all respondents regardless having ever filled in PROMs, those in favour of VAS mainly reasoned this by having more possibilities to select and those favouring NRS by better readability and interpretation. Maintaining a sitting position, preparing food, doing physical activity, intimacy and sleep problems were the items selected most frequently in the survey as in the qualitative study to be included in PROMs. The implementation of discussion on self-management, education/work and support possibilities at regular clinic visits was considered important by over 60% of responders. Overall, electronic capturing of PROMs was preferred over paper-based questionnaires (57% vs 13%).Conclusion:Our survey explored for the first time the personal experience and opinions of young people with IA concerning PROMs on a large scale and confirmed the results obtained in the qualitative study. This survey informed the EULAR PtC for including the perspective of young patients with IA into PROMs.References:[1] Mosor E et al. Arthritis Rheumatol. 2019; 71 (suppl 10)Disclosure of Interests:Alessia Alunno: None declared, Erika Mosor: None declared, Tanja Stamm Grant/research support from: AbbVie, Roche, Consultant of: AbbVie, Sanofi Genzyme, Speakers bureau: AbbVie, Roche, Sanofi, Paul Studenic Grant/research support from: Abbvie

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