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Article ; Online: Patient-led use of patient-reported outcome measure in self-Management of a Rotator Cuff Injury.

Santana, Maria J / Tomkins, Darrell J

Journal of patient-reported outcomes

2021 Volume 5, Issue 1, Page(s) 8

Abstract: Introduction: The patient is the person who experiences both the processes and the outcomes of care. Information held by the patient is vital for clinical and self-management, improving health outcomes, delivery of care, organization of health systems, ... ...

Abstract	Introduction: The patient is the person who experiences both the processes and the outcomes of care. Information held by the patient is vital for clinical and self-management, improving health outcomes, delivery of care, organization of health systems, and formulation of health policies. Patient-reported outcome measures (PROMs) play an important role in supporting patient's self-management. This narrative describes a patient-led use of a PROM to self-manage after a rotator cuff injury. Methods: This is a narrative of a patient who tore the supraspinatus tendon in her right shoulder in an accident. The Disabilities of the Arm, Shoulder and Hand, the DASH questionnaire, was used to monitor and self-manage recovery after the accident. The DASH questionnaire is a self-reported questionnaire that measures the difficulty in performing upper extremity activities and pain in the arm, shoulder or hand. It has been widely used in research studies, but here the patient initiated its use for self-management while waiting for and after rotator cuff surgery. The patient created separate sub-scale scores for function and for pain to answer questions from healthcare providers about her recovery. Results: There was noticeable improvement over 3 months of conservative treatment, from a high level of disability of 56 to 39 (score changed 17); however, the scores were nowhere near the general population normative score of 10.1. Surgery improved the score from 39 pre-surgery to 28. Post-surgical interventions included physiotherapy, pain management and platelet-riched plasma treatment (PRP). The score was 14 4 weeks post-PRP. Conclusions: The patient found the DASH useful in monitoring recovery from a rotator cuff injury (before and after surgery). The DASH contributed to communication with healthcare professionals and supported the clinical management. The DASH questionnaire was able to capture the patient's experience with the injury and surgical recovery, corroborating an improvement in function while there was persistent post-surgical pain.
Language	English
Publishing date	2021-01-13
Publishing country	Germany
Document type	Journal Article
ISSN	2509-8020
ISSN (online)	2509-8020
DOI	10.1186/s41687-020-00283-w
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Article ; Online: Correction to: Patient-led use of patient-reported outcome measure in self-Management of a Rotator Cuff Injury.

Santana, Maria J / Tomkins, Darrell J

Journal of patient-reported outcomes

2021 Volume 5, Issue 1, Page(s) 74

Language	English
Publishing date	2021-08-18
Publishing country	Germany
Document type	Published Erratum
ISSN	2509-8020
ISSN (online)	2509-8020
DOI	10.1186/s41687-021-00340-y
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Article ; Online: Variation in parental experiences with their child's hospitalization over the COVID-19 pandemic.

Kemp, Kyle A / Fairie, Paul / Steele, Brian / Santana, Maria J

Journal of patient-reported outcomes

2023 Volume 7, Issue 1, Page(s) 114

Abstract: Background: Hospitals and healthcare workers have been greatly impacted by the COVID-19 pandemic. The potential impacts upon the patient experience have been less documented, particularly in the pediatric setting. Our aim was to examine how parental ... ...

Abstract	Background: Hospitals and healthcare workers have been greatly impacted by the COVID-19 pandemic. The potential impacts upon the patient experience have been less documented, particularly in the pediatric setting. Our aim was to examine how parental experiences with their child's hospitalization varied during the COVID-19 pandemic at two children's hospitals in Alberta, Canada. Methods: A random sample of parents were surveyed within six weeks of their child's discharge from Alberta's two children's hospitals. Surveys were administered using the Alberta Pediatric Inpatient Experiences Survey (APIES) - a validated instrument used to assess parental experiences during their child's hospitalization. Surveys were linked with administrative inpatient records. Three cohorts were created based on hospital discharge date: Pre-COVID (Pre: April 2019 to March 2020), COVID year one (C1: April 2020 to March 2021), and COVID year two (C2: April 2021 to March 2022). We examined 48 survey questions, including four overall rating scales. Survey responses were Likert scales. These were transformed to normalized scores from 0 (worst) to 100 (best). Differences between cohorts were assessed using ANOVA and the post-hoc Tukey test. Results: A total of 3,611 surveys (1,314 Pre; 997 C1; 1,300 C2) were completed over the three-year period. Five questions showed differences between the Pre and C1 periods, six showed differences between Pre and C2, and 13 showed differences between C1 and C2. Among these questions, scores pre-COVID were lower than COVID year one, while results in COVID year two were lower than pre-COVID and COVID year one. Thirty-one survey questions showed no statistical differences between the three time periods. For the overall ratings, only hospital rating showed a difference in any of the periods (91.4 C1 vs. 90.2 C2). Overall ratings of doctors, nurses, and recommendation of the hospital to others showed no differences. Conclusion: This study showed that the experiences of parents during the first year of the COVID-19 pandemic were mildly better or comparable to historical results. This changed over the following year, where lower scores were reported on 13 questions.
MeSH term(s)	Humans ; Child ; Pandemics ; COVID-19/epidemiology ; Patient Discharge ; Parents ; Alberta/epidemiology ; Hospitals, Pediatric
Language	English
Publishing date	2023-11-10
Publishing country	Germany
Document type	Journal Article
ISSN	2509-8020
ISSN (online)	2509-8020
DOI	10.1186/s41687-023-00626-3
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Article ; Online: Using implementation science to inform the integration of electronic patient-reported experience measures (ePREMs) into healthcare quality improvement: description of a theory-based application in primary care.

Manalili, Kimberly / Santana, Maria J

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

2020 Volume 30, Issue 11, Page(s) 3073–3084

Abstract: Background: Collecting and monitoring the information from patients through patient-reported experience measures (PREMs) about the quality of care they receive is important for tracking changes in healthcare quality, stimulate innovation, and enhance ... ...

Abstract	Background: Collecting and monitoring the information from patients through patient-reported experience measures (PREMs) about the quality of care they receive is important for tracking changes in healthcare quality, stimulate innovation, and enhance person-centred care. The objective of this theoretical paper is to discuss the use of implementation science theories, models, and frameworks to inform and evaluate the integration of the electronic collection of PREMs (ePREMs) in healthcare quality improvement for primary care in Canada. Methods: To assess potential knowledge-to-practice gaps in implementing ePREMs in primary care in Alberta, the overarching implementation model that will be used is the Knowledge to Action Cycle. An integrated knowledge translation approach will ensure ongoing engagement of key stakeholders (e.g. primary care providers, patients) throughout the study. ePREM implementation will be informed by the identification of barriers and facilitators to implementation using the Consolidated Framework for Implementation Research (CFIR). The CFIR brings an organizational perspective providing an opportunity to explore the intervention characteristics, the context of implementation, individual factors, and the processes that influence implementation of ePREMs in healthcare. Identified barriers and facilitators to ePREM implementation will be mapped to evidence-based implementation strategies and prioritized by stakeholders. The RE-AIM framework will be used to guide the evaluation of ePREM implementation outcomes after six months of implementation by assessing Reach, Effectiveness, Adoption, Implementation, and Maintenance (sustainability). Discussion: Consultations with stakeholders affirm the importance of using integrated knowledge translation approaches and the need to better understand how to integrate ePREMs in primary care. Using an implementations science approach, this study can provide guidance for mitigating important ePREM implementation challenges and promote the successful uptake and use of ePREMs for quality improvement in healthcare.
MeSH term(s)	Alberta ; Delivery of Health Care ; Electronics ; Humans ; Implementation Science ; Patient Reported Outcome Measures ; Primary Health Care ; Quality Improvement ; Quality of Life/psychology
Language	English
Publishing date	2020-07-26
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	1161148-0
ISSN	1573-2649 ; 0962-9343
ISSN (online)	1573-2649
ISSN	0962-9343
DOI	10.1007/s11136-020-02588-1
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Article ; Online: How to analyze and link patient experience surveys with administrative data to drive health service improvement - examples from Alberta, Canada.

Kemp, Kyle A / Fairie, Paul / Steele, Brian J / Santana, Maria J

International journal of population data science

2022 Volume 7, Issue 4, Page(s) 1763

Abstract: The ability of hospitals and health systems to learn from those who use its services (i.e., patients and families) is crucial for quality improvement and the delivery of high-quality patient-centered care. To this end, many hospitals and health systems ... ...

Abstract	The ability of hospitals and health systems to learn from those who use its services (i.e., patients and families) is crucial for quality improvement and the delivery of high-quality patient-centered care. To this end, many hospitals and health systems regularly collect survey data from patients and their families, and are engaged in activities to publicly report the results. Despite this, there has been limited research into the experiences of patients and families, and how to improve them. Since 2015, our research team has conducted a variety of studies which have explored patient experience survey data, in isolation, and in linkages with routinely-captured administrative data sets across Alberta; a Canadian province of 4.4 million residents. Via secondary analyses, these studies have shed light upon the drivers of inpatient experience, the specific aspects of care which are most correlated with one's overall experiences, and the association of elements of the patient experience with other measures, such as patient safety indicators and unplanned hospital readmissions. The aim of this paper is to provide an overview of the methods we have used, including further details about the data sets and linkage protocol. The main findings from these papers have been presented for readers and those who wish to conduct their own work in this area.
MeSH term(s)	Humans ; Alberta ; Surveys and Questionnaires ; Hospitals ; Health Services ; Patient Outcome Assessment
Language	English
Publishing date	2022-10-13
Publishing country	Wales
Document type	Journal Article
ISSN	2399-4908
ISSN (online)	2399-4908
DOI	10.23889/ijpds.v7i4.1763
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Article: Adult Experiences with Hospitalization in Alberta, Canada During the COVID-19 Pandemic: A Comparative Cross-Sectional Study.

Kemp, Kyle A / Fairie, Paul / Steele, Brian J / Santana, Maria J

Journal of patient experience

2022 Volume 9, Page(s) 23743735221077518

Abstract: Little is known about the experiences of those hospitalized during the COVID-19 pandemic in Canada. Our aims were to (a) report on the experiences, (b) compare with historical results, and (c) assess for potential monthly differences of patients ... ...

Abstract	Little is known about the experiences of those hospitalized during the COVID-19 pandemic in Canada. Our aims were to (a) report on the experiences, (b) compare with historical results, and (c) assess for potential monthly differences of patients hospitalized in the early months of the COVID-19 across Alberta. A random sample of adults was surveyed within 6 weeks of discharge from 93 hospitals, using a modified version of the Canadian Patient Experiences Survey - Inpatient Care (CPES-IC). Discharges from April to September 2020 comprised the "during COVID-19 pandemic" cohort, while April to September 2019 formed the historical one. Results were reported as percent in "top box", indicative of the most positive answer choice. Odds of reporting a "top box" response were calculated while controlling for demographic and clinical features. In total, 23,412 surveys (11,344 during COVID-19, 12,068 historical) were obtained. Those hospitalized during COVID-19 had higher odds of "top box" ratings on 17 of 39 questions examined, and lower odds on 2 questions (information about the admission process, inclusion of family/friends in care decisions). The remaining 20 questions showed no difference between the 2 cohorts. Our results indicate that respondents hospitalized during the early months of the pandemic had experiences that were largely better or comparable to pre-pandemic. This speaks to the dedication and resilience of staff who provided care during challenging circumstances. Our findings may assist in mitigating fears among those who are hesitant to seek medical care during future pandemics or public health emergencies, including subsequent waves of COVID-19.
Language	English
Publishing date	2022-02-04
Publishing country	United States
Document type	Journal Article
ZDB-ID	2857285-3
ISSN	2374-3743 ; 2374-3735
ISSN (online)	2374-3743
ISSN	2374-3735
DOI	10.1177/23743735221077518
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Article ; Online: Patient-reported experiences and outcomes of virtual care during COVID-19: a systematic review.

Bajgain, Bishnu / Rabi, Sarah / Ahmed, Sadia / Kiryanova, Veronika / Fairie, Paul / Santana, Maria J

Journal of patient-reported outcomes

2023 Volume 7, Issue 1, Page(s) 126

Abstract: Introduction: The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare professionals to evaluate care ... ...

Abstract	Introduction: The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare professionals to evaluate care quality from the patient's perspective. This poses challenges to ensuring that patient-centered care is upheld within virtual environments. To address this, the study's objective was to review how virtual care has impacted patient experiences and outcomes during COVID-19, through the use of patient-reported experience and outcome measures (PREMs and PROMs), respectively. Methods: A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines to evaluate patient responsiveness to virtual care during COVID-19. Using an exhaustive search strategy, relevant peer-reviewed articles published between January 2020 and 2022 were pulled from MEDLINE, CINAHL, EMBASE, and PsychInfo databases. Study quality was independently assessed by two reviewers using the Mixed Methods Appraisal Tool. A patient partner was consulted throughout the study to provide feedback and co-conduct the review. Results: After removing duplicates, 6048 articles underwent title and abstract review, from which 644 studies were included in the full-text review stage. Following this, 102 articles were included in the study. Studies were published in 20 different countries, were predominantly cross-sectional, and reported on the delivery of virtual care in specialized adult outpatient settings. This review identified 29 validated PREMs and 43 PROMs. Several advantages to virtual care were identified, with patients citing greater convenience, (such as saving travel time and cost, less waiting experienced to see care providers) and increased protection from viral spread. Some studies also reported challenges patients and caregivers faced with virtual care, including feeling rushed during the virtual care appointment, lack of physical contact or examination presenting barriers, difficulty with communicating symptoms, and technology issues. Conclusion: This review provides supportive evidence of virtual care experiences during the COVID-19 pandemic from patient and caregiver perspectives. This research provides a comprehensive overview of what patient-reported measures can be used to record virtual care quality amid and following the pandemic. Further research into healthcare professionals' perspectives would offer a supportive lens toward a strong person-centered healthcare system.
MeSH term(s)	Adult ; Humans ; COVID-19/epidemiology ; Pandemics ; Cross-Sectional Studies ; Health Personnel ; Patient Reported Outcome Measures
Language	English
Publishing date	2023-12-01
Publishing country	Germany
Document type	Systematic Review ; Journal Article ; Review
ISSN	2509-8020
ISSN (online)	2509-8020
DOI	10.1186/s41687-023-00659-8
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Article ; Online: Health related quality of life during dialysis modality transitions: a qualitative study.

Dumaine, Chance S / Fox, Danielle E / Ravani, Pietro / Santana, Maria J / MacRae, Jennifer M

BMC nephrology

2023 Volume 24, Issue 1, Page(s) 282

Abstract: Background: Modality transitions represent a period of significant change that can impact health related quality of life (HRQoL). We explored the HRQoL of adults transitioning to new or different dialysis modalities.: Methods: We recruited eligible ... ...

Abstract	Background: Modality transitions represent a period of significant change that can impact health related quality of life (HRQoL). We explored the HRQoL of adults transitioning to new or different dialysis modalities. Methods: We recruited eligible adults (≥ 18) transitioning to dialysis from pre-dialysis or undertaking a dialysis modality change between July and September 2017. Nineteen participants (9 incident and 10 prevalent dialysis patients) completed the KDQOL-36 survey at time of transition and three months later. Fifteen participants undertook a semi-structured interview at three months. Qualitative data were thematically analyzed. Results: Four themes and five sub-themes were identified: adapting to new circumstances (tackling change, accepting change), adjusting together, trading off, and challenges of chronicity (the impact of dialysis, living with a complex disease, planning with uncertainty). From the first day of dialysis treatment to the third month on a new dialysis therapy, all five HRQoL domains from the KDQOL-36 (symptoms, effects, burden, overall PCS, and overall MCS) improved in our sample (i.e., those who remained on the modality). Conclusions: Dialysis transitions negatively impact the HRQoL of people with kidney disease in various ways. Future work should focus on how to best support people during this time.
MeSH term(s)	Adult ; Humans ; Dialysis ; Quality of Life ; Qualitative Research ; Renal Dialysis ; Data Accuracy
Language	English
Publishing date	2023-09-22
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2041348-8
ISSN	1471-2369 ; 1471-2369
ISSN (online)	1471-2369
ISSN	1471-2369
DOI	10.1186/s12882-023-03330-y
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Article ; Online: Co-building a training programme to facilitate patient, family and community partnership on research grants: A patient-oriented research project.

Nielssen, Ingrid / Ahmed, Sadia / Zelinsky, Sandra / Dompe, Brian / Fairie, Paul / Santana, Maria J

Health expectations : an international journal of public participation in health care and health policy

2023 Volume 26, Issue 4, Page(s) 1584–1595

Abstract: Introduction: Patient engagement in patient-oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. ... ...

Abstract	Introduction: Patient engagement in patient-oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health research, asks that patients be included as partners early, often and at as many stages of the health research process as possible. The objective of this POR project was to co-build an interactive, hands-on training programme that could support PRPs in understanding the processes, logistics and roles of CIHR grant funding applications. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in co-building the training programme. Methods: This multiphased POR study included a Working Group of seven PRPs with diverse health and health research experiences and two staff members from the Patient Engagement Team. Seven Working Group sessions were held over the 3-month period from June to August 2021. The Working Group worked synchronously (meeting weekly online via Zoom) as well as asynchronously. A patient engagement evaluation was conducted after the conclusion of the Working Group sessions using a validated survey and semi-structured interviews. Survey data were analysed descriptively and interview data were analysed thematically. Results: The Working Group co-built and co-delivered the training programme about the CIHR grant application process for PRPs and researchers in five webinars and workshops. For the evaluation of patient engagement within the Working Group, five out of seven PRPs completed the survey and four participated in interviews. From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together-communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group. Conclusion: This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co-build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application. Patient or public contribution: The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co-build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co-learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co-building more PRP-centred learning programmes and tools going forward.
MeSH term(s)	Humans ; Canada ; Research Design ; Learning ; Communication ; Motivation
Language	English
Publishing date	2023-04-20
Publishing country	England
Document type	Journal Article
ZDB-ID	2119434-8
ISSN	1369-7625 ; 1369-6513
ISSN (online)	1369-7625
ISSN	1369-6513
DOI	10.1111/hex.13763
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Article ; Online: Factors affecting implementation of patient-reported outcome and experience measures in a pediatric health system.

McCabe, Erin / Rabi, Sarah / Bele, Sumedh / Zwicker, Jennifer D / Santana, Maria J

Journal of patient-reported outcomes

2023 Volume 7, Issue 1, Page(s) 24

Abstract: Background: The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families' perspectives into evaluations of healthcare ... ...

Abstract	Background: The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families' perspectives into evaluations of healthcare services. Implementing these measures is complex and requires a thorough assessment of the context of implementation The purpose of this study is to describe the barriers and facilitators to PROMs and PREMs implementation and to recommend strategies for implementing these measures in a pediatric health system. Methods: We used a qualitative descriptive approach to analyse data from interviews to understand the experiences of PROMs and PREMs users across different pediatric settings in a single Canadian healthcare system. Results: There were 23 participants representing a variety of roles within the healthcare system and pediatric populations. We found five main factors that affected implementation of PROMs and PREMs in pediatric settings: 1) Characteristics of PROMs and PREMs; 2) Individual's beliefs; 3) Administering PROMs and PREMs; 4) Designing clinical workflows; and 5) Incentives for using PROMs and PREMs. Thirteen recommendations for integrating PROMs and PREMs in pediatric health settings are provided. Conclusions: Implementing and sustaining the use of PROMs and PREMs in pediatric health settings presents several challenges. The information presented will be useful for individuals who are planning or evaluating the implementation of PROMs and PREMs in pediatric settings.
MeSH term(s)	Humans ; Child ; Canada ; Patient Reported Outcome Measures ; Delivery of Health Care
Language	English
Publishing date	2023-03-09
Publishing country	Germany
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ISSN	2509-8020
ISSN (online)	2509-8020
DOI	10.1186/s41687-023-00563-1
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