The association between patient-reported outcomes (PROs) and patient participation in chronic care: A scoping review

Eriksen, Jeppe; Bygholm, Ann; Bertelsen, Pernille

doi:10.1016/j.pec.2022.01.008

Cited by 28 publications

(83 citation statements)

References 82 publications

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“…In alignment with several prior studies [15,24,39,40], we found that PROs improved patientclinician communication. When the physician incorporated the patients' responses in the dialogue, their understanding of the disease seemed to increase, making it easier for them to handle the burden of kidney disease in everyday life.…”

Section: Discussionsupporting

confidence: 88%

Remote follow-up based on patient-reported outcomes in patients with chronic kidney disease: A qualitative study of patient perspectives

Grove

Schougaard²,

Ivarsen

et al. 2023

PLoS ONE

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Background Patient-reported outcomes (PROs) are increasingly used in outpatient follow-up. PRO-based remote follow-up offers a new healthcare delivery model, where PROs are used as the basis for outpatient follow-up in patients with chronic kidney disease. However, the patient’s perspective of this novel remote care delivery remains unknown. Objectives This study aimed to explore the patients’ experiences using PROs in remote care and how this mode of follow-up may enhance patient engagement. Design A qualitative approach was employed, guided by Focused Ethnography and Interpretive Description. Participants Purposively, 15 patients with chronic kidney disease experienced with PRO-based remote follow-up in 3 renal outpatient clinics in the Central Denmark Region, were recruited. Measures Field studies comprising participant observation in remote PRO consultations and individual, semi-structured interviews with the patients constituted the empirical data. Thematic analysis was performed according to Braun and Clarke’s six-phase process. Results PRO-based remote follow-up may enhance patient engagement by a) improving communication, b) increasing disease knowledge, c) inducing flexibility, d) ensuring clinician feedback on PRO data, and e) prompting clinical action. Barriers to enhanced patient engagement were identified as a) lack of feedback on PRO data, b) lower disease knowledge, c) PRO in competition with biomedical data, and d) loss of personal relation. Conclusion PRO-based follow-up in remote care holds several advantages for the patients. However, some barriers need clinical awareness before PROs may enhance the patients’ engagement in remote follow-up. Future studies should explore the impact of involving relatives in PRO-based follow-up.

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Section: Discussionsupporting

confidence: 88%

Remote follow-up based on patient-reported outcomes in patients with chronic kidney disease: A qualitative study of patient perspectives

Grove

Schougaard²,

Ivarsen

et al. 2023

PLoS ONE

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“…We only evaluated a digital version of EMPOWER-UP, but both digital and analog versions are needed to avoid excluding healthcare users or HCPs with low eHealth literacy or lack of technology access [54].…”

Section: Reliabilitymentioning

confidence: 99%

EMPOWER-UP: psychometric evaluation of a generic questionnaire for assessing empowerment in relational decision-making and problem-solving among adults with long-term health conditions

Marqvorsen,

Petersen,

Lund

et al. 2023

Preprint

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Background Relational decision-making and problem-solving are powerful activities occurring daily across all healthcare contexts. Their empowering potential can be difficult to judge and is seldom fully exploited, and they can even be perceived as disempowering. This calls for assessment of the extent to which healthcare users perceive their interactions with healthcare providers as empowering. We developed a 36-item draft version of the generic EMPOWER-UP questionnaire deemed to have good face and content validity by healthcare users and researchers with expertise across multiple healthcare contexts. This article reports the psychometric properties of the Danish and English versions of the questionnaire. Methods A cross-sectional study was carried out among 526 adults diagnosed with diabetes, cancer, or severe mental illness in Denmark, United Kingdom, and Australia with recent (≤ 6 months) interaction with a healthcare provider. We evaluated structural validity, cross-cultural validity, and measurement invariance using confirmatory and exploratory factor analyses, item response theory modelling, and differential item functioning. Additionally, we evaluated empirical reliability and internal consistency. Results The final 24-item Danish and English versions of EMPOWER-UP has a three-factor second-order structure. The three factors of empowering mechanisms (14 items), disempowering mechanisms (6 items), and empowering insight (4 items) are connected through the second-order factor, realizing empowerment. Partial credit model calibration supported the use of summed subscale item scores, enhancing usability in clinical practice settings. Differential item functioning analysis demonstrated invariance across subgroups. Empirical reliability of the subscales was estimated at 0.85–0.95, and Cronbach’s alpha was 0.90–0.96. Conclusions The 24-item EMPOWER-UP questionnaire measuring empowerment in relational decision-making and problem-solving showed strong psychometric properties among adults with cancer, diabetes, and severe mental illness. Further evaluation in other contexts and populations is needed, including evaluation of construct validity, responsiveness to change, and test-retest reliability.

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“…20 PROMs and PREMs might have care improvement potential in the eld of chronic diseases due to their information value for patient empowerment including self-management and shared decision-making which could in uence treatment adherence and lifestyle choices. 21 However, PROMs and PREMs have rarely been used in routine chronic care due to the unspeci ed timeline and the complexity of implementation. 22 Due to the high relevance of this topic, the OECD PaRIS initiative focuses on collecting and analyzing PROMs in patients with chronic diseases across 18 countries starting their trial phase in 2023.…”

Section: Background and Rationale {6a}mentioning

confidence: 99%

Evaluating the population-based utilization and benefit of digitally collected patient-reported outcomes and experiences in patients with chronic diseases: The PROMchronic study protocol

Nikkhah,

Steinbeck,

Grobe

et al. 2023

Preprint

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Background Chronic diseases are associated with a high disease burden. Under- and overprovision of care as well as quality variation between healthcare providers persists, while current quality indicators rarely capture the patients’ perspective. Capturing patient-reported outcome measures (PROMs) as well as patient-reported experience measures (PREMs) is becoming more and more important to identify gaps in care provision, prioritize services most valuable to patients, and aid patients' self-management. Methods This prospective cohort study aims to evaluate the potential benefits of PROM usage in patients with chronic diseases. We evaluate whether (1) digitally collected PROMs and PREMs can be used for health system performance assessment (HSPA) by generating a representative response of chronically diseased individuals with asthma, chronic obstructive pulmonary disease (COPD), diabetes, and coronary artery disease (CAD) across Germany and (2) whether, based on the PROMs and PREMs, low-value care can be identified. As patient-reported outcomes (PROs) are rarely presented back to patients, (3) this study also examines patients’ reactions to their PROM scores in the form of digital PRO feedback. For these purposes, randomly selected patients from a nationwide German insurer are digitally surveyed with generic and disease-specific PROMs and PREMs as well as additional questions on their health-related behavior four times over one year. Individual PRO feedback is presented back to patients longitudinally and compared to a peer group after each survey period. Patient-reported data is linked with health insurance data. Response rates, changes in health and experience outcomes over time, self-reported changes in health behavior, and healthcare system utilization will be analyzed. Discussion We aim to fill the research gap on the population-based utilization of PROMs and PREMs in patients with chronic diseases and add to the current understanding of PROM data-sharing with patients. The study’s results can thereby inform whether a healthcare system-wide approach of collecting PROMs and PREMs can be utilized to identify low-value care, assess quality variation within and across chronic conditions, and whether PRO feedback is helpful and associated with any changes in patient’s health behaviors. Trial registration German Clinical Trials Register - DRKS00019916. Registration date: August 22, 2023.

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The association between patient-reported outcomes (PROs) and patient participation in chronic care: A scoping review

Cited by 28 publications

References 82 publications

Remote follow-up based on patient-reported outcomes in patients with chronic kidney disease: A qualitative study of patient perspectives

Remote follow-up based on patient-reported outcomes in patients with chronic kidney disease: A qualitative study of patient perspectives

EMPOWER-UP: psychometric evaluation of a generic questionnaire for assessing empowerment in relational decision-making and problem-solving among adults with long-term health conditions

Evaluating the population-based utilization and benefit of digitally collected patient-reported outcomes and experiences in patients with chronic diseases: The PROMchronic study protocol

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