scholarly journals How do third sector organisations or charities providing health and well-being services in England implement patient-reported outcome measures (PROMs)? A qualitative interview study

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e039116
Author(s):  
Alexis Foster ◽  
Alicia O'Cathain ◽  
Janet Harris
Keyword(s):  
Third Sector ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Front Line ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Third Sector Organisations ◽  
Front Line Workers ◽  
Health And Well Being

ObjectivesTo identify the facilitators and barriers to implementing patient-reported outcome measures (PROMs) in third sector organisations (TSOs) delivering health and well-being services.DesignA qualitative interview study. Participants were recruited using purposive, opportunistic and snowballing methods. Framework analysis was used.SettingTSOs including charities, community groups and not-for-profit organisations in England, UK.ParticipantsThirty interviewees including service users, TSO front-line workers and managers, commissioners of TSOs and other stakeholders such as academic researchers.ResultsTSOs primarily used PROMs because of pressures arising from the external funding context. However, organisations often struggled to implement PROMs, rarely getting the process right first time. Facilitators for implementation included having an implementation lead committed to making it work, investing resources in data management systems and support staff and taking a collaborative approach to designing the PROMs process. The latter helped to ensure an appropriate PROMs process for the specific TSO including choosing a suitable measure and planning how data would be collected, processed and used. There was a dilemma about whether TSOs should use standardised well-being measures (eg, the Warwick-Edinburgh Mental Well-being Scale) or design their own PROM. Not all TSOs sustained the collection and reporting of PROMs over time because this required a change in organisational culture to view PROMs as beneficial for the TSO and PROMs becoming part of front-line workers’ job specifications.ConclusionsTSOs are trying to use PROMs because they feel they have no choice but often struggle with implementation. Having an implementation lead, designing an appropriate process, investing resources, training staff and taking mitigating action to address potential barriers can facilitate implementation. Some of the findings are consistent with the experiences of more clinical services so appear relevant to the implementation of PROMs irrespective of the specific context.

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.

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

scholarly journals Web-Based Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial

10.2196/19685 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e19685
Author(s):  
Afaf Girgis ◽  
Ivana Durcinoska ◽  
Anthony Arnold ◽  
Joseph Descallar ◽  
Nasreen Kaadan ◽  
...  
Keyword(s):  
Emergency Department ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Diverse Population ◽  
Web Based ◽  
Patients With Cancer ◽  
Patient Reported

Background Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. Objective This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. Methods Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. Results From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). Conclusions Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633 International Registered Report Identifier (IRRID) RR2-10.1186/s12885-018-4729-3

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.

Usefulness of a Novel System for Feedback of Patient-Reported Outcome Measures in Children Recovering From Burns

2019 ◽  
Author(s):  
Alexa Riobueno-Naylor ◽  
Stephanie Romo ◽  
Lewis Kazis ◽  
Shirley Wang ◽  
Martha Lydon ◽  
...  
Keyword(s):  
Psychosocial Functioning ◽  
Surgical Care ◽  
Feedback System ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Outpatient Setting ◽  
Burn Injuries ◽  
Burn Care ◽  
Patient Reported

Abstract The Burn Outcomes Questionnaire for children ages 5–18 years (BOQ5–18) is a widely used, reliable, and valid parent-reported outcome measure designed to assess children’s recovery from burn injuries in 12 physical and psychosocial domains. This study evaluated the feasibility, acceptability, and usefulness of a feedback system that delivered BOQ and Pediatric Symptom Checklist (PSC-17; a widely used measure of psychosocial functioning) results to burn care clinicians prior to an outpatient appointment or a postoperative surgical encounter. The BOQ and the PSC-17 were administered to the parents of 147 children receiving outpatient or surgical care in two pediatric burn hospitals. Clinician and parent perceptions of the feedback system were evaluated using debriefing questionnaires. Over half of all patients were at-risk on at least one BOQ subscale, and risk on three or more BOQ domains was significantly associated with a higher likelihood of poor psychological scores on the PSC-17 (P < .001). Significant differences in BOQ scores were found between the two hospital sites on four BOQ subscales, three related to physical ability and one to psychosocial well-being. Parent ratings of the feedback system were positive, with 90% of parents in both settings agreeing that the BOQ tablet experience was easy and helpful. Clinician attitudes differed across the two settings with more positive clinician ratings of the system in the outpatient setting (P < .001). Clinician interviews revealed that the data was especially useful in bringing to light psychosocial aspects of functioning relevant to long-term recovery from burn injuries.

scholarly journals Relationship between remission, disease activity and patient-reported outcome measures in patients with recent-onset systemic lupus erythematosus

Lupus ◽  
2020 ◽  
Vol 29 (6) ◽  
pp. 625-630
Author(s):  
Rebecca Heijke ◽  
Mathilda Björk ◽  
Martina Frodlund ◽  
Laura McDonald ◽  
Evo Alemao ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Disease Activity ◽  
Pain Intensity ◽  
Lupus Erythematosus ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Systemic Lupus ◽  
Recent Onset ◽  
Patient Reported

Objective Definitions of remission in systemic lupus erythematosus (SLE; DORIS (1A/1B/2A/2B)), disease activity assessments and patient-reported outcome measures (PROMs) are useful in shared decision making between patients with SLE and physicians. We used longitudinal registry data from well-characterized Swedish patients with recent-onset SLE to explore potential correlations between DORIS status or disease activity, and PROMs. Methods Patients from the Clinical Lupus Register in North-Eastern Gothia, Sweden, who fulfilled the 1982 American College of Rheumatology and/or the 2012 Systemic Lupus International Collaborating Clinics classification criteria without prior organ damage, were enrolled at diagnosis. Data on treatments, serology, remission status (DORIS), disease activity (SLE Disease Activity Index-2000 (SLEDAI-2K)) and PROMs (quality of life: EuroQoL-5 Dimensions (EQ-5D); pain intensity, fatigue and well-being: visual analog scale (VAS) 0–100 mm) were collected during rheumatology clinic visits at months 0 (diagnosis), 6, 12, 24, 36, 48 and 60. Correlations were assessed using Pearson correlation and/or beta regression coefficients. Results A total of 41 patients were enrolled (median age = 39 years, 80% female, 85% white). Achievement of DORIS 1A and 2A (neither of which includes serology) significantly correlated with all PROMs (EQ-5D: p ≤ 0.02; pain: p = 0.0001; fatigue: p = 0.0051; well-being: p < 0.0001). Disease activity measures were correlated with VAS pain intensity ( p < 0.03) and VAS well-being ( p < 0.04). Conclusions Our findings illustrate the importance of the interplay between remission, disease activity assessments and PROMs. PROMs may be a useful tool in clinical practice, being administered prior to patient visits to streamline clinical care.

A Pilot Study of Olfactory Training in Older Hyposmic Adults

2019 ◽  
Vol 33 (6) ◽  
pp. 650-656 ◽  
Author(s):  
Jensine M. Lamira ◽  
Zachary M. Soler ◽  
Rodney J. Schlosser
Keyword(s):  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Neural Regeneration ◽  
Subjective Well Being ◽  
Olfactory Loss ◽  
Patient Reported ◽  
Baseline Factors ◽  
The Impact ◽  
Olfactory Training

Background Olfactory loss is a common problem that significantly impacts quality of life. Olfactory training (OT) has been used most commonly for viral and traumatic olfactory dysfunction (OD) in younger subjects with hopes of neural regeneration, improved olfactory function, and subjective well-being. The objective of this study was to investigate the impact of a novel form of OT using 12 odors in participants over 45 years of age with objective OD. Methods Twenty-nine participants underwent OT using 12 standardized odor pens for a duration of 6 months. Objective OT of Threshold, Discrimination, and Identification and patient-reported outcomes were assessed at baseline and after 6 months of OT. Results Of the 29 participants who entered the protocol, only 16 subjects completed all 6 months of OT. Significant improvements were seen in overall Threshold Discrimination Identification (TDI; mean 4.40 points, P = .007), Discrimination (mean 1.44 points, P = .019), and Identification (mean 2.02 points, P = .011). Forty-four percent of subjects who completed OT achieved a mean clinically important difference of at least 5.5 points on TDI. Conclusion There was no significant change in patient-reported outcome measures, and no baseline factors were associated with change in olfaction. In this study, OT with 12 odors improves objective olfaction in nearly half of the older adults with OD. Further investigation is necessary to determine the impact of improved olfaction on overall health outcomes.

scholarly journals Translation and cultural adaptation of IPOS (integrated palliative care outcome scale) in Estonia

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Merli Laissaar ◽  
Riina Hallik ◽  
Pille Sillaste ◽  
Ulvi Ragun ◽  
Mari-Leen Pärn ◽  
...  
Keyword(s):  
Palliative Care ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Interviews ◽  
Adaptation Process ◽  
Team Members ◽  
Palliative Care Outcome Scale ◽  
Patient Reported ◽  
Care Outcome

Abstract Background Patient Reported Outcome Measures (PROMs) are questionnaires that could be used in palliative care (PC) to evaluate patient well-being and monitor their care. PROMs enable a focus on what is important to patients by putting the patient at the center of care. Adapting an existing PROM requires considering cultural differences, general usability and understandability of translated terms. Aim To translate and culturally adapt both the patient and staff three and seven day versions of the Integrated Palliative care Outcome Scale (IPOS) into Estonian. The IPOS consist of 10 questions (staff versions 9 questions) and 17 close ended items. The sub aim is to describe the differences and discrepancies found during the adaptation process and compare the results with previous research. Methods The translation and adaptation process of IPOS was conducted using recommended guidelines consisting of six phases and included cognitive interviews with patients (n = 11) and palliative care multidisciplinary team members (n = 8). The study was conducted in two major Estonian hospitals. Results The Estonian IPOS demonstrated face and content validity, acceptance by patients and staff. As a result of expert group review and cognitive interviews with patients and staff, 9 semantic changes were implemented. Conclusions Patient and staff versions of the IPOS with a recall of 3 or 7 days were translated and culturally adapted for Estonia. The Estonian IPOS four versions are ready for use in Estonia.

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