Methods for shortening patient-reported outcome measures

2018 ◽  
Vol 28 (10-11) ◽  
pp. 2992-3011 ◽  
Author(s):  
Daphna Harel ◽  
Murray Baron
Keyword(s):  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Theory Model ◽  
Mixed Integer ◽  
Optimal Test ◽  
Test Assembly ◽  
Patient Reported ◽  
High Discrimination

Patient-reported outcome measures are widely used to assess patient experiences, well-being, and treatment response in clinical trials and cohort-based observational studies. However, patients may be asked to respond to many different measures in order to provide researchers and clinicians with a wide array of information regarding their experiences. Collecting such long and cumbersome patient-reported outcome measures may burden patients, increase research costs, and potentially reduce the quality of the data collected. Nonetheless, little research has been conducted on replicable, and reproducible methods to shorten these instruments that result in shortened forms of minimal length. This manuscript proposes the use of mixed integer programming through Optimal Test Assembly as a method to shorten patient-reported outcome measures. This method is compared to the existing standard in the field, which is selecting items based on having high discrimination parameters from an item response theory model. The method is then illustrated in an application to a fatigue scale for patients with Systemic Sclerosis.

Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method

2021 ◽  
pp. 155335062199887
Author(s):  
Alaa El-Hussuna ◽  
Ines Rubio-Perez ◽  
Monica Millan ◽  
Gianluca Pellino ◽  
Ionut Negoi ◽  
...  
Keyword(s):  
Colorectal Surgery ◽  
Outcome Measures ◽  
Short Form ◽  
Wide Spectrum ◽  
Core Outcome Set ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Eortc Qlq

Purpose. The primary aim of the study was to review the existing literature about patient-reported outcome measures (PROMs) in colorectal cancer and IBD. The secondary aim was to present a road map to develop a core outcome set via opinion gathering using social media. Method. This study is the first step of a three-step project aimed at constructing simple, applicable PROMs in colorectal surgery. This article was written in a collaborative manner with authors invited both through Twitter via the #OpenSourceResearch hashtag. The 5 most used PROMs were presented and discussed as slides/images on Twitter. Inputs from a wide spectrum of participants including researchers, surgeons, physicians, nurses, patients, and patients’ organizations were collected and analyzed. The final draft was emailed to all contributors and 6 patients’ representatives for proofreading and approval. Results. Five PROM sets were identified and discussed: EORTC QLQ-CR29, IBDQ short health questionnaire, EORTC QLQ-C30, ED-Q5-5L, and Short Form-36. There were 315 tweets posted by 50 tweeters with 1458 retweets. Awareness about PROMs was generally limited. The general psycho-physical well-being score (GPP) was suggested and discussed, and then a survey was conducted in which more than 2/3 of voters agreed that GPP covers the most important aspects in PROMs. Conclusion. Despite the limitations of this exploratory study, it offered a new method to conduct clinical research with opportunity to engage patients. The general psycho-physical well-being score suggested as simple, applicable PROMs to be eventually combined procedure-specific, disease-specific, or symptom-specific PROMs if needed.

scholarly journals Patient-Reported Outcome Measures (PROMs) in Pediatric Non-Malignant Hematology: A Systematic Review

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2180-2180
Author(s):  
Robert J Klaassen ◽  
Julia Y. Kinahan ◽  
Johann M. I. Graham ◽  
Yamilée V. Hébert ◽  
Katie O'Hearn
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Clinical Environment ◽  
Patient Reported ◽  
Disease Specific

Introduction: Patient reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without interpretation by healthcare professionals. As such, they allow patient concerns about a variety of healthcare issues to be identified and addressed in an efficient and actionable manner. PROMs can be generic, with questions relevant to multiple disease groups or disease-specific, with questions targeting the symptoms, limitations, and feelings common to the disease group. This systematic review identified generic and disease-specific PROMs for monitoring symptoms and health-related quality of life (HRQoL) in 4 pediatric non-malignant hematologic disease groups: thalassemia, hemophilia, immune thrombocytopenia (ITP), and sickle cell disease (SCD). Methods: Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that either validated or used PROMs as an outcome measure in the four disease groups. Articles were excluded when <30% of the population was pediatric (<18 years), when the study setting was inpatient, when the tool had not been validated, or when the article did not report the use of a PROM for monitoring symptoms or HRQoL. Notably, hemophilia records published prior to 2016 were not screened as a systematic review by Limperg et al. (2017) identified validated PROMs in the pediatric hemophilia population and was used to include relevant articles. Results: The search identified 1176 unique records, with 902 records remaining for title and abstract screening after removal of 274 hemophilia articles published prior to the systematic review. Including hemophilia records identified from the 2017 review, 217 articles met inclusion criteria incorporating 107 generic and 20 disease-specific PROMs. Of the generic tools, the most frequent categories identified include psychological well-being (26 tools), general quality of life (19 tools), and family impact (19 tools). The most frequently used tool was the PedsQL 4.0 Generic Core Scales (66 studies), appearing 33 times in SCD, 25 times in thalassemia, 5 times in ITP, and 3 times in hemophilia. Other commonly used generic tools include the Short Form Health Survey, Child Health Questionnaire, PROMIS Health Measures, and Child Behaviour Checklist (Table). Disease-specific tools identified in the review include the PedsQL SCD Module, Kids ITP Tool, Haemo-QoL, CHO-KLAT, and TranQol (Table). In addition, 10 studies reported on pain diaries and 9 of these studies were SCD focused, the other being hemophilia focused. Conclusion: This systematic review identified several generic and disease-specific PROMs that have been used in pediatric non-malignant hematology. Although generic tools have been used more frequently, many disease-specific tools have been validated and are available for use in the clinical environment. We are currently conducting focus groups with patients, parents, and clinicians to determine the optimal choice of tools for monitoring symptoms and HRQoL in the pediatric non-malignant clinical environment. Disclosures No relevant conflicts of interest to declare.

scholarly journals Electronic Forms For Patient Reported Outcome Measures (PROMs) ARE AN Effective, Time-Efficient, And Cost-Minimizing Alternative To Paper Forms

2021 ◽  
Author(s):  
Jennifer Y Yu ◽  
Talia Goldberg ◽  
Nicholas Lao ◽  
Brian M Feldman ◽  
Y. Ingrid Goh
Keyword(s):  
Outcome Measures ◽  
User Experience ◽  
Pediatric Rheumatology ◽  
Intraclass Correlation ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Valuable Insight ◽  
Efficient Manner ◽  
Patient Reported

Abstract BACKGROUND: Patient reported outcome measures (PROMs) provide valuable insight on patients’ well-being and facilitates communication between healthcare providers and their patients. The increased integration of the technology within the healthcare setting presents the opportunity to collect PROMs electronically, rather than on paper. The Childhood Health Assessment Questionnaire (CHAQ) and Quality of My Life (QoML) are common PROMs collected from pediatric rheumatology patients. The objectives of this study are to a) determine the equivalence of the paper and electronic forms (e-form) of CHAQ and QoML questionnaires; b) identify potential benefits and barriers associated with using an e-form to capture PROMs; and c) gather feedback on user experience. METHODS: Participants completed both a paper and an e-form of the questionnaires in a randomized order, following which they completed a feedback survey. Agreement of the scores between the forms were statistically analyzed using the intraclass correlation coefficient (ICC) (95% Confidence Interval (CI)) and bias was assessed using a Bland-Altman plot. Completion and processing times of the forms were compared using mean and median measures. Quantitative analysis was performed to assess user experience ratings, while comments were qualitatively analyzed to identify important themes.RESULTS: 196 patients participated in this project. Scores on the forms had high ICC agreement >0.9. New patients took longer than returning patients to complete the forms. Overall, the e-form was completed and processed in a shorter amount of time than the paper form. 83% of survey respondents indicated that they either preferred the e-form or had no preference. Approximately 10% of respondents suggested improvements to improve the user interface.CONCLUSIONS: E-forms collect comparable information in an efficient manner to paper forms. Given that patients and caregivers indicated they preferred completing PROMs in this manner, we will implement their suggested changes and incorporate e-forms as standard practice for PROMs collection in our pediatric rheumatology clinic.

Commentary on ‘Disability outcome measures in multiple sclerosis clinical trials’

2012 ◽  
Vol 18 (12) ◽  
pp. 1718-1720 ◽  
Author(s):  
J Gareth Noble ◽  
Lisa A Osborne ◽  
Kerina H Jones ◽  
Rod M Middleton ◽  
David V Ford
Keyword(s):  
Multiple Sclerosis ◽  
Clinical Trials ◽  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Technologies ◽  
Additional Information ◽  
Patient Reported ◽  
Disability Outcome

In order to fully understand and explore the effectiveness of any intervention for the management of multiple sclerosis (MS), it is important to have robust, valid, reliable, and universally applied measures. The recent article, ‘Disability outcome measures in multiple sclerosis clinical trials’ by Cohen, Reingold, Polman and Wolinsky (2012), explores this issue in regards to the effective measurement of MS-related disability, and the utilisation of patient-reported outcome measures, whilst highlighting the need for collaboration between the academic and clinical communities. Although it is important to examine disability measures, it is also equally important to recognise that physical function is only one aspect of a person’s experience; for example, quality of life and psychological well-being are also important aspects to assess. The application of e-health technologies and patient registers could be a useful method of gaining additional information, using patient-reported outcomes. This commentary explores these issues in relation to points raised by the Cohen et al. paper.

scholarly journals Electronic forms for patient reported outcome measures (PROMs) are an effective, time-efficient, and cost-minimizing alternative to paper forms

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Jennifer Y. Yu ◽  
Talia Goldberg ◽  
Nicholas Lao ◽  
Brian M. Feldman ◽  
Y. Ingrid Goh
Keyword(s):  
Outcome Measures ◽  
User Experience ◽  
Pediatric Rheumatology ◽  
Intraclass Correlation ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Valuable Insight ◽  
Efficient Manner ◽  
Patient Reported

Abstract Background Patient reported outcome measures (PROMs) provide valuable insight on patients’ well-being and facilitates communication between healthcare providers and their patients. The increased integration of the technology within the healthcare setting presents the opportunity to collect PROMs electronically, rather than on paper. The Childhood Health Assessment Questionnaire (CHAQ) and Quality of My Life (QoML) are common PROMs collected from pediatric rheumatology patients. The objectives of this study are to (a) determine the equivalence of the paper and electronic forms (e-form) of CHAQ and QoML questionnaires; (b) identify potential benefits and barriers associated with using an e-form to capture PROMs; and (c) gather feedback on user experience. Methods Participants completed both a paper and an e-form of the questionnaires in a randomized order, following which they completed a feedback survey. Agreement of the scores between the forms were statistically analyzed using the intraclass correlation coefficient (ICC) (95 % Confidence Interval (CI)) and bias was assessed using a Bland-Altman plot. Completion and processing times of the forms were compared using mean and median measures. Quantitative analysis was performed to assess user experience ratings, while comments were qualitatively analyzed to identify important themes. Results 196 patients participated in this project. Scores on the forms had high ICC agreement > 0.9. New patients took longer than returning patients to complete the forms. Overall, the e-form was completed and processed in a shorter amount of time than the paper form. 83 % of survey respondents indicated that they either preferred the e-form or had no preference. Approximately 10 % of respondents suggested improvements to improve the user interface. Conclusions E-forms collect comparable information in an efficient manner to paper forms. Given that patients and caregivers indicated they preferred completing PROMs in this manner, we will implement their suggested changes and incorporate e-forms as standard practice for PROMs collection in our pediatric rheumatology clinic.

scholarly journals Scar Assessment Tools: How Do They Compare?

2021 ◽  
Vol 8 ◽  
Author(s):  
Amanda Min Hui Choo ◽  
Yee Siang Ong ◽  
Fadi Issa
Keyword(s):  
Outcome Measures ◽  
Clinical Relevance ◽  
Treatment Strategies ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Assessment Tools ◽  
Scar Assessment ◽  
Wide Range ◽  
Patient Reported

Healing after dermal injury is a complex but imperfect process that results in a wide range of visible scars. The degree of disfigurement is not the sole determinant of a scar's effect on patient well-being, with a number of other factors being critical to outcome. These include cosmetic appearance, symptoms such as itch and pain, functional loss, psychological or social problems, and quality of life. An accurate assessment of these domains can help clinicians measure outcomes, develop, and evaluate treatment strategies. A PubMed literature search was performed up to 31st March 2020. Ten objective scar measurements, four Clinician-Reported Outcome Measures (CROMs), six Patient-Reported Outcome Measures (PROMs), and one combined measure were evaluated for their reliability, clinical relevance, responsiveness to clinical change, and feasibility. Many quantitative tools were limited in their clinical relevance and feasibility, whereas few qualitative CROMs and PROMs have undergone rigorous assessment. This review examines currently available assessment tools, focusing primarily on subjective scar measurements (CROMs, PROMs), and offers a perspective on future directions in the field.

scholarly journals Patient-reported outcome measures in community mental health teams: pragmatic evaluation of PHQ-9, GAD-7 and SWEMWBS

2019 ◽  
Vol 43 (5) ◽  
pp. 221-227 ◽  
Author(s):  
Paul Blenkiron ◽  
Lucy Goldsmith
Keyword(s):  
Mental Health ◽  
Community Mental Health ◽  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Return Rates ◽  
Patient Reported ◽  
Patient Health

Aims and methodWe evaluated routine use, acceptability and response rates for the Patient Health Questionnaire (PHQ-9), Generalised Anxiety Disorder Scale (GAD-7) and Short Warwick-Edinburgh Mental Well-Being Scale (SWEMWBS) within adult community mental health teams. Measures were repeated 3 months later. Professionals recorded the setting, refusal rates and cluster diagnosis.ResultsA total of 245 patients completed 674 measures, demonstrating good initial return rates (81%), excellent scale completion (98–99%) and infrequent refusal/unsuitability (11%). Only 32 (13%) returned follow-up measures. Significant improvements occurred in functioning (P = 0.01), PHQ-9 (P = 0.02) and GAD-7 (P = 0.003) scores (Cohen's d = 0.52–0.77) but not in SWEMWBS (P = 0.91) scores. Supercluster A had higher initial PHQ-9 and GAD-7 scores (P < 0.001) and lower SWEMWBS scores (P = 0.003) than supercluster B. Supercluster C showed the greatest functional impairment (P = 0.003).Clinical implicationsPHQ-9 and GAD-7 appear acceptable as patient-reported outcome measures in community mental health team. SWEMWBS seems insensitive to change. National outcome programmes should ensure good follow-up rates.

scholarly journals The role of kidney registries in expediting large-scale collection of patient-reported outcome measures for people with chronic kidney disease

2021 ◽  
Author(s):  
Sabine N van der Veer ◽  
Cecile Couchoud ◽  
Rachael L Morton
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Outcome Measures ◽  
Large Scale ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Evidence Base ◽  
Routine Care ◽  
Patient Reported Outcome ◽  
Patient Reported

ABSTRACT In this issue of Clinical Kidney Journal, Van der Willik et al. report findings from a pilot study where they introduced collection of patient-reported outcome measures (PROMs) into routine kidney care in Dutch dialysis centres. It is comparable to a registry-led PROMs initiative in Sweden, published in Clinical Kidney Journal in 2020. Both studies reported low average PROMs response rates with substantial between-centre variation, and both identified suboptimal patient and staff engagement as a key barrier to implementing PROMs in routine care for people with chronic kidney disease (CKD). This suggests that national kidney registries could be well placed to facilitate large-scale collection of PROMs data, but that they may require additional guidance on how to do this successfully. In this editorial, we discuss the current state-of-play of PROMs collection by kidney registries and provide an overview of what is (un)known about the feasibility and effectiveness of PROMs in CKD and other conditions. We anticipate that the fast-growing evidence base on whether, and how, PROMs can be of value in CKD settings will expedite registry-based PROMs collection, which will ultimately lead to more valuable and person-centred services and to enhanced health and well-being of people with CKD.

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