Master Thesis
“The Role of PROMs and Patient Engagement in a
Value-based Health Care Setting:
A Scoping Review.”
Supervisor:
Dr. O.P. Roemeling
Co-assessor:
Nienke Renting
ByGiulia Yvonne Polchri
MSc BA Change management
Student number: S3762947
e-mail:
g.y.polchri@student.rug.nl
wordcount: 12614 (including abstract)
Date: 20/01/2020
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Table of contents
1. Introduction………..4
1.1 Value-based Healthcare………..4
1.2 Defining Value: Outcome Measurements and PROMs………..6
1.3 Patient-Reported Outcome Measures……….7
1.4 Patient Engagement in the creation of PROMs………..9
2. Methods………..11
2.1 Scoping review……….11
2.2 Search strategy………..11
2.3 Inclusion and exclusion criteria………12
2.4 Data abstraction and collection……….12
2.5 Preliminary reflection on findings: semi-structured interviews………14
3. Results………15
3.1 Study characteristics……….15
3.2 Emergent results………...20
3.2.1 Value assessment and benchmarking………..20
3.2.2 Patient engagement……….22
3.2.3 Clinical decision-making………24
3.2.4 Knowledge generation………25
3.2.5 Value-based payments………26
3.3 Interviews content analysis………...29
4. Discussion and conclusion……….31
4.1 Main findings and theoretical interpretation………31
4.2 Limitations and suggestions for future research………...33
4.3 Conclusion………33
3
Abstract
Background: Value-based health care has the potential to transform health care delivery, and allows for
patient-centric care by focusing on the value delivered to patients. A key element of VBHC is outcome measurement as an instrument to assess the quality of the provided care. Patient-reported outcome measures are questionnaires filled in by patients, reporting on their health status. PROMs could be essential in the process towards patient-centered care, but the width of their adoption, their scope, and how they could promote patient engagement in VBHC has not yet been investigated. Therefore, the aim of this research is to explore the role of PROMs and how they support patient involvement in VBHC.
Method: A scoping review was conducted to examine the research questions. Scopus and Web of Science
were searched for relevant articles published between January 2009 and November 2019. The studies were included in the final set if: 1) they had and explicit VBHC setting; and 2) the included outcome measures and PROMs referred to patient-related outcomes and were not intended to evaluate outcomes for other stakeholders. From the full-review, additional topics emerged and were organized into a conceptual map. The map was further investigated through two informal interviews with professionals working with PROMs at two Dutch hospitals.
Findings: The results indicated that the adoption of PROMs in VBHC is increasing, especially in Europe and
the US. An overlap between PROMs used in empirical and non-empirical studies was identified. However, compared to non-empirical work, empirical papers tended to include a higher number of generic PROMs rather than disease specific ones. Furthermore, no new PROMs are being created specifically for VBHC settings. Finally, it emerged that there is a high potential for PROMs in VBHC and that their role can be seen as “multifunctional”. These functions are: 1) value assessment and benchmarking; 2) promoting patients’ engagement in their care cycle; 3) guiding clinical decision making and allowing treatments comparison; 4) contributing to knowledge generation and learning; and 5) supporting value-based payments and reimbursement. The roles were ordered in a hierarchy, based on the number of articles referring to each function. Through the literature, interconnections among some roles were identified. The interviews supported the multifunctional role of PROMs, but not the hierarchical distribution. One interviewee also highlighted that the focus on particular functions is dependent on the hospital’s goals for PROMs adoption and contingent on the kind of VBHC project to be implemented.
Conclusion: This study supports the high potential of PROMs use in VBHC. Despite new PROMs not being
created in VBHC, patients are engaged in their care cycle by participating in the generation of standardized sets of outcome measures. Such involvement allows to select measures and domains that reflect the patients’ needs while also granting for comparability at a national and international level. Moreover, the study underlines that the role of PROMs in VBHC is multifunctional, thus not limited to patient engagement, and provides the base for future research on the topics.
Keywords: value-based health care (VBHC), outcome measures, patient-reported outcome measures
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1. Introduction
The health care sector is undergoing a systematic change in its service delivery strategy and objectives. Previous attempts to reduce care costs through austerity led to paradoxical results, increasing both demands on health care and public spending (European Society of Radiology, 2017). Nevertheless, in the last decade, a new paradigm named value-based healthcare (VBHC) has shifted the focus of care from production volume to value provided to patients. This new paradigm should serve as a solution to variation in quality and growing costs of health care (Porter, 2009; Porter, 2010; Porter & Lee, 2013; Porter, Larsson & Lee, 2016; Porter & Kaplan, 2016). The surge of VBHC to restructure health care has underlined the importance of outcome measures to assess the value generated, and especially patient-reported outcome measures (PROMs) to target the main stakeholders of health care: patients (Marshall et al., 2006; Porter & Lee, 2013; Porter, Larsson & Lee, 2016; Ackerman, 2017). PROMs reflect patients’ perception of their health status and can be used to identify expectations and goals for treatment results (Lavallee et al., 2016; Ackerman, 2017). Despite the historical use of PROMs for clinical research, their application to clinical practice is scarcely documented. Indeed, the literature regarding design, implementation methods, and benefits of PROMs is scattered and inconsistent (Snyder & Brundage, 2010; Boyce & Browne, 2013; Wiering et al., 2016; Wiering et al., 2017). Especially, no one before has ever investigated the width of PROMs adoption and scope in a VBHC setting, nor how they contribute to patients’ involvement in health care.
This research aims to review the value-based healthcare literature, focusing on PROMs and their role in promoting active patient engagement in the health care system. The objective of this study is to answer two research questions. The first one regards the role of PROMs among outcome measures in VBCH and the extent of their adoption. The second covers the topic of patient involvement in the creation of measures and how PROMs play a part in enhancing patients’ participation in their care cycle. Considering the wide scope of the research questions, and the aim of the study, a scoping review was selected as the research methodology. The results were further discussed with PROMs practitioners through additional semi-structured interviews. The main contributions of this research are threefold, this research: 1) increases the understanding of PROMs use and their application in practice with special attention to patient involvement, 2) identifies gaps in the current literature, and 3) provides a starting point for further investigations. In the following paragraphs of chapter 1, background information on VBHC, outcome measures, and PROMs are provided to contextualize the research questions. The remaining chapters will be structured as follows: the methods section in chapter 2, the result analysis in chapter 3, the discussion of results and conclusion to the study in chapter 4.
1.1 Value-Based Health Care
5 delivered while maintaining sustainable costs (Porter & Lee, 2013). Such improvements can be obtained by adopting a value-based approach to care delivery, as suggested by one of the main founders, Michael E. Porter (Porter, 2009; Porter, 2010). In a value-based health care (VBHC) system, instead of focusing on the volume of services delivered, healthcare services are structured around the creation and maximization of value for the patient (Porter, 2009; Porter & Lee, 2013; Porter, Larsson & Lee, 2016; Porter & Kaplan, 2016; Porter, 2010). VBHC proposes that value for patients is determined by a simple equation: health outcomes over cost. Maximizing value means achieving the best outcome at the lowest cost, through either improving the outcomes of health care without raising costs or by lowering costs while maintaining the quality of outcome (Porter & Lee, 2013). However, in reality, the relationship between outcome improvements and costs is complex and requires further investigation (Gupta & Rettiganti, 2017). Here, outcomes must be specific for each condition and multi-dimensional to fully capture the value of care. Cost, on the other hand, should cover the overall care cycle necessary to treat a condition (Porter, 2010).
VBHC is typified by a series of guidelines termed the “Value Agenda” (Porter & Lee, 2013). Poter and Lee (2013) created a framework (see appendix 1) that consists of six interdependent and mutually reinforcing pillars: 1) organize into Integrated Practice Units (IPUs); 2) measure outcomes and costs for every patient; 3) move to bundle payment for care cycles; 4) integrate care delivery across separate facilities; 5) expand geographic reach; and 6) build an enabling information technology platform (Porter & Lee, 2013).
6 Nevertheless, the results of VBHC initiatives are ambiguous. On the one hand, part of the literature states that there is no correlation between VBHC implementation and patient outcomes improvement (Nilsson et al., 2017; Gupta & Rettiganti, 2017), or that such correlation is invalid because of the poor quality of studies (Kampstra et al., 2018). On the other hand, some cases show improvements in effectiveness and outcomes delivered, with substantial savings in costs (McLaughlin et al., 2014; Kirkpatrick et al., 2015). It is important to keep in mind that change is never linear and should be seen as a complex and interactive process. Such complexity and lack of definite endpoint, often causes evaluation of results to be problematic (Burnes, 2017).
In their paper, Porter and Lee (2013) determine value measurement (in terms of outcomes and costs) as a crucial phase in improving health. Thus, although VBHC might be the driver for quality improvements, it is necessary to further elaborate on, and research on, the role of outcome measures ( Kampstra et al., 2018). With maximizing value for patients as the main objective of reforming health care, outcome measures appear to be indispensable to quantify such value.
1.2 Defining Value: Outcome Measurements and PROMs
Evaluating improvements in quality, or in this case value, requires systematic and comprehensive measurements, and their sustained integration into work routines. As famously stated by Peter Drucker, “If you cannot measure it, you cannot improve it.”. This quote is in accordance with the most influential change management models, which include outcomes measurement as a fundamental step to successfully carry out the implementation of change (Cawsey et al., 2011). Indicators to evaluate quality are generally divided into structure, process, or outcome measures (Mainz, 2003; Donabedian, 2005). Despite the importance of outcome measures according to VBHC, most quality measures have focused on process compliance with practice guidelines rather than actual outcomes improvements (Porter, Larsson & Lee, 2016). From a value, patient-centered perspective, process measures are less relevant as they only have a minor impact on value generation. Furthermore, they were shown to be unfit to represent quality in clinical practice (Ebbevi et al., 2016). Outcome measures can: 1) improve clinician-patient shared decision-making, 2) supply information on outcome quality to providers and institutions, allowing higher transparency and driving improvement, and 3) provide the opportunity for comparative effectiveness research (Ong et al., 2017). Some of the limitations of outcome measures include the need for additional resources (e.g., time to be collected, personnel, infrastructure), the necessity for risk adjustment, and the time delay between care delivery and outcome measure reporting.
7 al., 2016). Nevertheless, the focus on process measures has contributed to the slow down of the development of relevant outcome measures and has prevented their standardization (Porter, Larsson & Lee, 2016).
Outcome measures and definitions have been long fragmented and inconsistent due to the lack of effective national or global standardizing mechanisms (Porter, Larsson & Lee, 2016). In 2012, the International Consortium for Health Outcomes (ICHOM) was established by the Harvard Business School in conjunction with the Boston Consulting Group and the Karolinska Institutet, to stimulate the diffusion of outcome measures that improve value for stakeholder, and to unlock the potential of value-based health care (International Consortium for Health Outcomes, 2019). Since then, the ICHOM has collaborated with experts and patient representative groups to set minimum standard outcome sets and risk factors for specific conditions, following a structured process, and covering around the 45% of the disease burden of high-income countries (Porter, Larsson & Lee, 2016). Thanks to institutes like ICHOM, or initiatives such as the Netherlands Joint Outcomes and Transparency Initiative (commonly known as “Meetbaar Beter”) (van Veghel et al., 2016), outcome measures are gaining the relevance they deserve. It includes measures such as Patient-Reported Outcome Measure (PROMs), that were earlier deemed to be excessively subjective since they do not focus on clinical status or other “objective” outcomes (Squitieri et al., 2017), but that have a central role in creating value for the patient (Porter, Larsson & Lee, 2016).
1.3 Patient-Reported Outcome Measures
8 PROMs were initially designed for clinical research purposes (Black, 2013; Ahmed et al., 2012), and mainly from a clinician perspective (Squitieri et al., 2017). Nowadays, PROMs are increasingly being used in clinical practice to monitor and improve patient care, and, on an aggregated level, as benchmarks to compare providers’ outcomes (Ackerman, 2017). More hospitals and clinicians have begun to implement them, although only a few countries make widespread use of them: England, Sweden, the Netherlands, the United States and Australia (Black, 2013; van Veghel et al., 2016; Ackerman, 2017). The most salient case is England, where PROMs are included in the National Health Service (NHS) outcomes framework (Black, 2013). PROMs are supporting British health care by allowing evaluation and enhancement of patient care, facilitating provider comparison to stimulate quality improvements, and by providing data to improve cost-efficiency (Black, 2013).
The historical use of PROMs in research is obvious, yet their role and effect in clinical research is uncertain and scarcely documented. Whilst the patient’s voice is valued for the unique perspective it offers, the integration of patient-reported outcomes as a key source of information in everyday practice is limited (Snyder & Brundage, 2010). Research regarding the effectiveness of PROMs to enhance patient outcomes is characterized by heterogeneous results, that make defining their value problematic (Boyce & Browne, 2013). The reasons behind such mixed results are multiple, from design and measuring problems, to logistical and technical barriers to their implementation (Bilimoria et al., 2014; Forsberg et al., 2015).
Methodologically, the selection of relevant outcomes is challenging, as the measure needs to be representative of the patient’s exigency (Bilimoria et al., 2014). Understanding how PROMs are developed is essential in choosing the instrument to be used. Their design takes place in multiple phases, involving the use of interactive, mixed-methods research, and inputs from both professionals and patients (Voineskos et al., 2018). To effectively select a proper set of items, Item-Response Theory (IRT) or Rasch Measurement Theory (RMT) should be used to guarantee for their psychometric properties. PROMs must fulfill validity, reliability and responsiveness criteria (Voineskos et al., 2018). It is often unclear what criteria should be applied to select the tools for each specific condition when choosing among existing instruments (Bilimoria et al., 2014) since the questions of the PROM must be relevant for the context of use, the scope of data collection and the population or disease analyzed (Dawson et al., 2010; Squitieri et al., 2017).
9 Measures Information System (PROMIS) is a PRO tool developed by the U.S. National Institutes of Health (NIH) that offers a standardized and universal method for PROM collection, as an attempt to overcome the abovementioned hardships (Bernstein et al., 2019; Health Measures, 2019). PROMIS uses IRT to develop its questions, and Computer Adaptive Testing (CAT), making efficient and reliable tools available for use (Hills et al., 2019). Third, the system-level integration of PROMs involves financial, operational and cultural investments, that are required from hospitals (Squitieri et al., 2017).
Even in the case of orthopaedics, leader speciality in PROMs usage (Rolfson, 2016), lack of consistency in design, accurate collection, and the correlated implementation problems might, in turn, affect the possibility of delivering value-based health care to its full potential (Andrawis et al., 2013; Ayers et al., 2013). More research on PROMs, their design, and successful integration is needed to shed light on their role as value creators in VBHC (Øvretveit et al., 2017). Legacy instruments, PROMs characterized by little patient involvement in their development, have been used for years, but they are not sensitive enough for comparison or performance evaluation (Squitieri et al., 2017). Patient active participation and involvement in the creation process of the measures is thus essential. Although PROMs are supposed to represent the patients’ perspective on care outcome, patients are often not included in their development. Even yet, their involvement is to be considered necessary for the content validity of the questionnaire (Wiering et al., 2016; Wiering et al., 2017;).
1.4 Patient Engagement in the creation of PROMs
“Whereas the physician brings training and clinical expertise, patients bring their life experience, their deep
investment in the outcome of their case, their skills and resilience, and a unique perspective on needs and priorities” (deBronkart, 2015, p. 1).
Patient-10 valued and patient-reported outcome measure (PV-PROM), and 4) Patient-irrelevant and patient-reported outcome measure (PI-PROM) (Table 1). Of these four, only PG-PROMs and PC-PROMs are designed by involving patients directly, while PV-PROMs are subsequently validated by patients. PI-PROMs are neither designed with patients’ help, nor later validated by the patients, and tend to represent only the clinicians’ perspective of which outcomes are relevant ones.
The presence and amount of patient involvement in PROMs’ creation is not the only factor to take into consideration, and it is also important to see during which part (or parts) of the creation process the patient is included. According to Wiering et al. (2016), there are at least three phases where the patient can be involved: determining which health outcomes should be measured, where patients can contribute with suggestions; the item development itself, through techniques such as focus groups and interviews; and lastly, the testing for comprehensibility, to ensure that the instrument is easy to understand and interpret. Furthermore, independently from the type, amount, or phase of involvement, active patient participation in the creation of PROMs is essential to capture patient perspective fully, even if it is sometimes difficult or expensive to achieve (Wiering et al., 2017).
With increasing pressures toward a new health care delivery system, based on value and not on volume, and thus patient-centeredness (Porter, 2009; Porter, 2010; Porter & Lee, 2013), it appears obvious that PROMs will become essential in measuring value for the patient (Marshall et al., 2006; Porter, Larsson & Lee, 2016). Notwithstanding their growing popularity, PROMs often seem to be poorly designed, collected or used (Andrawis et al., 2013; Ayers et al., 2013), and patient involvement in their creation and validation has been seldom and scarcely documented (Wiering et al., 2016). For this reason, this study aims to investigate two research questions:
R1: What is the role of PROMs in value-based health care and how widespread is their use as outcome measures?
R2: Are patients actively involved in the creation process of PROMs in value-based health care settings? And how is their involvement structured and organized?
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2. Methods
2.1 Scoping Review
The research questions are investigated through a scoping review by a single reviewer. In the field of evidence-based research, Grant and Booth (2009) highlighted fourteen common review types and their associated methodologies and characteristics. In their article, scoping reviews are defined as: “a preliminary assessment of the potential size and scope of available research literature” (p. 101). The aim is to identify the nature and extent of research evidence on scarcely investigated topics, to assess whether further research is necessary. Scoping reviews are similar to systematic reviews in their attempt to be structured, replicable and transparent (Grant & Booth, 2009), but are characterized by broader research questions (Arksey & O'Malley, 2005). Under the aim of scoping reviews, inclusion criteria do not encompass factors such as study design or type of data collected. Furthermore, the quality of the included studies is often not assessed (Arksey & O'Malley, 2005). The review was conducted following the PRISMA guidelines, specifically, the extension for scoping reviews (PRISMA, 2019).
2.2 Search strategy
The search was based on two databases, namely Scopus and Web of Science (WoS). The two databased are considered complementary (Burnham, 2006), thus a comprehensive source for the research. Only articles written in English, from peer-reviewed journals were included. The research article: “A strategy for health care reform - Toward a value-based system” from Porter (2009) was identified as the emblematic paper of VBHC, and hence initially used as a key term for research. In May 2019, the two databases were searched for articles, including in their reference list the abovementioned paper from Porter. This initial search led to 241 results on Scopus and 309 on WoS. After this first search, the databases were searched for articles from 2009 onward, that contained in their title, abstract or keywords the terms “value based health care” or “value based healthcare”. Respectively, 255 and 207 results were found on Scopus and WoS. In total, among the databases and search terms, 1012 papers were identified. After removing duplicates from the set, 621 articles remained. Appendix 4 clearly shows the search strategy and its results. A new research was conducted on November 13th,
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2.3 Inclusion and exclusion criteria
As already mentioned, the time frame for the research was from 2009 onward, and only articles written in English and published in peer-reviewed journals were included. The full text of these papers needed to be accessible. No specific patient group and study design were defined as criteria for inclusion or exclusion. The terms “outcome”, “outcome measure”, “patient” and “PROM” were researched among the 621 abstracts from the primary research, and among the 302 of the additional ones, to identify the part of VBHC literature regarding the measurement of outcomes. The papers were included in the study if the terms searched for were referring to the measurement of outcomes, and the term PROM had the meaning of patient-reported outcome measure. This selection reduced the relevant literature from 621 to 108 articles for the first round, and 29 for the second one. The full text was assessed for these 137 articles. A final number of 80 papers (see appendix 5 for the references) was obtained from the full-text review by only including papers where the VBHC context of the research was explicit, and where the outcome measures mentioned referred to patient-related outcomes. For example, papers were excluded if value was not defined as health outcomes over costs, or if terms such as value-based health care or value-based purchasing/reimbursement were not used to contextualize the study. Outcomes were not considered patient-related when measures were intended to evaluate other health care stakeholders, such as physicians. Figure 1 summarizes the search strategy and selection process.
2.4 Data abstraction and collection
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2.5 Preliminary reflection on findings: semi-structured interviews
Following the analysis of the literature set for the scoping review, two semi-structured interviews were conducted to verify the conceptual map that summarizes emergent results. For the interviews, two open-ended questions were formulated. Open-ended questions have the advantage of providing a richness of information to the interviewer, and to guarantee freedom of expression to the interviewee (Kumar, 2014). Hence, open-ended questions were chosen as the best fit to investigate the conceptual map applicability in real-life hospital settings. The questions where: 1) “Does the map reflect the actual way in which PROMs are being used in
your hospital?”, 2) “What would you modify or add to the map?”. The content of the interviews was adapted
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3. Results
3.1 Sample characteristics
The majority of papers, 64 (representing 80% of the total articles), were retrieved from Web of Science, against the 16 (20%) obtained through Scopus. The papers included in the final set range from 2013 to 2019. No articles from 2009 to 2012 matched the inclusion criteria, showing that interest in value-based health care and outcome measurements had a slow start. The number of papers identified from 2013 to 2015 was of 4 papers per year. Thus the trend remained steady during this period. From 2016 to 2019, there was an increasing number of articles published per year on the topics of outcome measures and PROMs in VBHC, although 2018 represents an exception. The number of papers published was respectively 13, 20, 12, 24 for the years 2016, 2017, 2018, and 2019. It is unclear what caused such a reduction in papers published on the topics in 2018, requiring further investigation. 2019 was the richest year. Figure 2 provides a graphical representation of the number of articles per year.
Fig. 2 Number of articles per year included in the set
Although the number of articles on the topic increased during the years, their geographical distribution is limited. 51,25% of the studies (n. 41) originated from North America (the US and Canada). The second main contributor was the Netherlands, with 12 articles, followed by Sweden with 4, and the UK with 2. A total of 5 articles originated from Austria, Belgium, Italy, Finland, and Spain, that provided one research with each. In total, 24 research articles originated from the European continent, representing 28,75% of the total set. Lastly, 15 pieces of research were of international origins (18,75%), and one originated from South Africa (1,25%). 4 4 4 13 20 12 24 0 5 10 15 20 25 30 2013 2014 2015 2016 2017 2018 2019
16 The researches comprise 15 medical specialties: orthopaedics (22 articles); oncology (12 articles), neurology (5 articles); gastroenterology (4 articles); radiology (3 articles); cardiology (3 articles); dermatology (2 articles); obstetrics/gynecology (2 articles); geriatrics, pediatrics, pneumology,
endocrinology, nephrology, physiotherapy and rheumatology (one article each, 7 in total). The speciality was not specified for the remaining 16 articles, that are indicated in the graphical representation below under the category “not specified” (Fig. 3).
Fig. 3 Medical specialities
Of the 80 papers constituting the set, 52 (65%) were empirical studies. Empirical studies covered three main themes: 1) The creation and evaluation of outcome measures, standard sets and registries, 2) Comparison of outcome measures/PROMs and importance ranking for patients, and the 3) Evaluation of improvements in clinical health, satisfaction, and economic outcomes. Articles 51, 55, 69 and 80 (of appendix 5) did not match these three macro-categories and respectively covered: experiences of implementing VBHC initiatives; the development of a methodology to assess value; the use of radar charts to communicate value; and the role of change management models in providing value. The remaining 28 articles (35%) that were non-empirical included: 1) literature reviews, and 2) purely theoretical articles and concept papers on VBHC, outcome measurements, PROMs, and cost-effectiveness. The studies encompassed nine methodological types: Delphi
Orthopaedics 29% Oncology 16% Neurology 6% Gastroenterology 5% Radiology 4% Cardiology 4% Dermatology 3% Obstetrics/Gynecology 3% Others 9% Not specified 21%
MEDICAL SPECIALITIES
17 method (13 articles); Retrospective analysis (11); Survey (8); Literature review (6); Cohort study (5); Interviews (3); Case study (3); Mixed method (2); Randomized controlled trial (1). Research types that did not match any of these categories, or which methodology was unclear, were identified as other (28).
Of the total papers, 16, thus 20%, did not include or mentioned PROMs among relevant outcome measures. Instead, the articles focusing exclusively on PROMs were 25, so 31%. Lastly, the remaining 39 articles of the set, representing the 49%, included both outcome measures in general and PROMs. These values show that 80% of the researches encompassed PROMs as significant outcomes to be included in VBHC settings to promote patient-centricity in healthcare. The results support the increasing relevance of PROMs mentioned in the introduction.
All PROMs contained in the articles are collected in appendices 6 and 7. Appendix 6 includes PROMs from empirical papers, while appendix 7 includes PROMs from non-empirical studies. Overall, empirical and non-empirical papers shared the same preeminent outcome domains. These domains comprised quality of life (QoL), health-related quality of life (HRQoL), and pain. Furthermore, figure 4 shows PROMs in common among empirical and non-empirical researches. However, the dissemination of these PROMs among generic or disease specific was different. For empirical papers, the proportion is balanced, respectively, 29 generic PROMs and 32 disease specific ones. For non-empirical papers, the number of disease specific is remarkably higher than the number of generic ones, respectively, 31 versus 18. It must be considered that many of the disease specific PROMs arose from single literature reviews listing numerous measures, and this might be the cause of the disproportion in comparison to empirical papers. For empirical papers, the Visual Analogue Scale (VAS) for pain evaluation was the most frequently used PROM, mentioned by seven articles. For non-empirical researches, the most common tool was the 36-Item Short Form Survey (SF-36), mentioned by eight articles. It was impossible to categorize the obtained PROMs into Porter’s 3-tiers, as PROMs’ role is contingent on the time of administration and specific use. In fact, the articles often identified the same PROM under different tiers.
18 First, it was not possible to evaluate patients’ direct engagement in the creation of measures, as no articles on the creation of new PROMs were part of the literature included in the review. Second, two non-empirical research articles mentioned patient involvement as meaningful in creating value measures. Third, four empirical papers mentioned patient engagement in the creation of measures and outcome sets, while fifteen included direct patient involvement in the creation of standardized outcome sets or the evaluation of outcome measures. In total, researches encompassing patient engagement were 26% of the total set, thus, less than one third. The highest amount of patient engagement was found in those empirical researches aimed at the creation of standardized sets of outcome measures for specific diseases (e.g., articles for the creation of ICHOM standard sets), where patient representatives were involved in the creation of outcome domains, definitions, measures, tools, and in the final validation of such measures. In those articles, patient involvement had the purpose of ensuring the patient-centricity of relevant outcomes included, to guarantee sets that reflect patients' actual needs. Table 1 reports the above information and specifies the articles that fall in each category.
Element Articles (of
appendix 5) Percentage Study design Empirical N. 52 65% - Creation/ evaluation of measures, standard sets and registries
1, 12, 14, 16, 17, 24, 28, 32, 35, 37, 41, 49, 53, 58, 61, 73, 78, 79 - Comparison of outcome measures/PROMs and importance ranking 4, 5, 6, 7, 38, 39, 54, 71, 77 - Evaluation of improvements in clinical health and/or economic outcomes 8, 10, 13, 14, 23, 26, 40, 42, 43, 44, 45, 46, 47, 48, 50, 59, 60, 65, 68, 70 - Others 51, 55, 69, 80 Non-empirical N. 28 35% - Literature reviews 2, 3, 11, 27, 30, 31, 33, 36, 66 - Purely theoretical
and concept papers
19 Survey N. 8 4, 6, 8, 24, 37, 48, 71, 77 10% Literature review N. 6 3, 27, 30, 33, 36, 66 7,5% Cohort study N. 5 7, 10, 13, 38, 40 6,25% Interviews N. 3 17, 50, 51 3,75% Case study N. 3 52, 69, 80 3,75% Mixed method N. 2 39, 42 2,5% Randomized controlled trial N. 1 15 1,25% Other N. 28 2, 9, 11, 18, 19, 20, 21, 22, 25, 28, 29, 31, 34, 47, 55, 56, 57, 60, 62, 63, 64, 67, 68, 70, 72, 74, 75, 76, 35% PROM inclusion Not included N. 16 10, 13, 14, 17, 19, 23, 25, 26, 27, 31, 39, 45, 63, 74, 75, 80 20% Only PROMs N. 25 4, 5, 6, 7, 8, 9, 11, 15, 22, 24, 37, 38, 40, 43, 44, 46, 54, 60, 65, 69, 70, 71, 72, 76, 77 31% Mixed N.39 1, 2, 3, 12, 16, 18, 20, 21, 28, 29, 30, 32, 33, 34, 35, 36, 41, 42, 47, 48, 49, 50, 51, 52, 53, 55, 56, 57, 58, 59, 61, 62, 64, 66, 67, 68, 73, 78, 79 49% Patient engagement Only Mentioned N. 6 7.5% - Empirical 42, 52, 73, 77 - Non-empirical 18, 76 Direct involvement in the creation/ evaluation of measures, standard sets and registries
N. 15 1, 12, 16, 28, 35,
38, 41, 49, 51, 53, 55, 58, 61, 78, 79
19%
Tab. 1 Summary of sample characteristics
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3.2 The multifunctional role of PROMs
After reviewing the papers, it emerged how PROMs are adopted beyond their role as simple outcome measures. Their use and application range over at least five roles. The most consistent use of PROMs through the set was associated with value assessment (in terms of quality of output to costs), an aspect that was already emphasized in this research background information, and benchmarking among institutions. Furthermore, the literature displayed an increasing focus on PROMs as guides in clinical decision making and treatments comparison, their contribution to knowledge generation and learning, and their role in value-based payments and reimbursement. Lastly, although the literature showed a lack of patient participation in the creation of measures and standardized sets, it highlighted other manners in which PROMs contribute to the general involvement of patients in health care. Specifically, it appeared how PROMs promote goal alignment, among patients and physicians, and shared decision-making. Figure 4 provides a conceptual map embodying emergent results. The results are ordered from the most preeminent to the less preeminent.
Fig. 4 The multifunctional role of PROMs
3.2.1 Value assessment and benchmarking
21 The ICHOM promoted many empirical papers for the creation of sets of measures (all including PROMS) to allow standardization, comparability, and to guide hospitals and registries in the collection of patient-relevant outcome measures (1, 12, 16, 35, 41, 49, 58, 61, 79 and 78). A concrete example of such efforts is the “TrueNTH Global Registry” (Evans et al., 2017). The TrueNTH used ICHOM’s standardized datasets and outcome definitions for localized and advanced prostate cancer, for the development of an international registry to monitor and improve localized prostate cancer health outcomes (Evans et al., 2017; Sampurno et al., 2019). The electronic registry system provides data quality through a rigorous validation process, which is part of the upload process that ensures data reliability and harmonization (Sampurno et al., 2019). Other attempts towards standardization were found in articles aimed at comparing the validity of legacy instruments, with newer and more versatile PROMs, or more generally, scrutinizing different PROMs among each other (e.g., 4, 21, 54, 61). The PROsetta Stone, for example, is a project to link patient-reported outcome measures with the related PROMIS (Friedstat et al., 2017). In contrast, only one study on breast cancer from Lagendijk et al. (2018) mentioned the need for reference scores to evaluate whether outcome levels attained are positive or not, indicating that more research is needed on the topic.
The use of PROMs for the comparison of different providers locally and internationally remains low (9, 59, 65, 73, 76 and 78). Such scarce usage of PROMs in benchmarking might be correlated to a bigger gap. In fact, there is a total lack of cost inclusion in value assessment. While PROMs are being used to assess part of the value equation, i.e. health outcomes, the denominator of the equation is being ignored. Only a few articles included cost analysis in their researches (10, 23, 26, 45, 55, 59, 65, 68, 69). Of these articles, numbers 10, 23, 26 and 45 did not include PROMs but used other outcome measures in correlation with their cost analysis. Those studies all used different methods to account for care cost, with only article 23 using time-driven activity-based costing (TDABC), recommended by VBHC literature, and article 45 using activity-based costing. Articles 55, 65, 68, and 69 included PROMs, but, as for the previous article, different costing techniques were involved. Article 55, from Parra et al. (2017), calculated an average yearly expenditure per patient, encompassing direct and indirect costs. Article 65, from Steenhuis et al. (2017), based its cost calculation on total invoiced health care costs, thus using the fees charged. Articles 68 and 69, from Thaker et al. (2016), where the only ones to adopt both PROMs and TDABC. Article 59, from Romley et al. (2019) used a PREM, instead of PROM, and accounted for costs based on the cost-to-charge ratios submitted by hospitals. Except for article 23 that did not involve the use of PROMs, no other studies proved a correlation between the use of outcome measurements for quality improvement and cost reduction.
22
3.2.2 Patient engagement
The second most recurrent result was the role of PROMs for patient engagement in health care and the care cycle, mentioned in thirty articles. Even though there were no research articles on the creation of PROMs and how patients participate in it, alternative ways in which PROMs contribute to patient involvement surfaced from the analysis. Patient engagement through the use of PROMs appears to correspond to enhanced shared decision making and goal alignment amidst patients and physicians.
As mentioned earlier, patients’ engagement through PROMs in VBHC stems from inclusion in the selection of outcome domains and measures. Another form of involvement happens when patients are asked to suggest additional relevant outcomes, or to rank them, or provide feedback on selected ones (articles 28, 37, 49, and 55). Such engagement does not have an expiration date, as entities such as the ICHOM, or the Meetbaar Beter (MB) initiative, request patients regular support for set maintenance and updates (van Veghel et al., 2016).
On the other hand, electronic systems that automatically send reminders and PROMs to be filled, help patients the other way around, not to lose track of their care (Hennink et al., 2013). Telemedicine (in conjunction with PROMs) is an example of how PROMs can promote patients’ engagement in their care, increasing value delivered by supporting therapy and medicine adherence, reducing unnecessary visits and so on (de Jong et al., 2017). It is also an example of how to adapt outcome measurement in VBHC for chronic diseases that require constant monitoring of disease activity (de Jong et al., 2017). PROMs assist the shift from reactive care to proactive and help to decrease health-care dependency (42, 63, 72). Not only patients want to contribute and participate in their care cycle, but they also seem to favor the use of PROMs (Lagendijk et al., 2018).
PRO measurement can both improve communication among patients and physicians while guiding quality improvement efforts. Nijagal et al. (2018) provide an example of how many women experience post-partum incontinence but fail to report their symptoms if not specifically questioned. In this case, PROMs become a tool to empower patients by providing them knowledge, helping them in their decision-making.
Shared decision-making
23 Especially, PROMs are important for high-survival disorders, and where the choice of therapy can highly affect the quality of life. Voineskos et al. (2018) highlight how PROMs facilitate patients in making choices about their care treatments. Patients are often interested in knowing what other patients with their same condition have experienced, and the collection of PROM data provides the opportunity to present such information directly. PROMs promote shared decision-making by allowing for comparability and evaluation among multiple therapies and interventions (37, 68, 76). Through PROMs, value-based health care empowers patients to make informed choices based on the quality provided by each treatment, and the respective side effects or risks (Voineskos et al., 2018). Such evaluations might lead health systems to support interventions that are more costly in the short-term, but that improve health outcomes in the long-term, allowing to save on unnecessary expenses later (Riva & Pravettoni, 2016). Some researches, such as the one from Rolfson et al. (2016) and the one from Elf et al. (2017), state that PREMs should be integrated to PROMs in evaluating the quality of treatment and in their comparison. The role of PREMs in patients’ involvement, and how to better combine PREMs and PROMs needs to be further researched, as their conjoined use might further support quality evaluation and comparison among treatments.
Benefits in communication and shared-decision making are essential factors in how PROMs improve value. Without such benefits, PROMs might represent only a burden to patients, and especially for those with multiple conditions (Squitieri et al., 2017). Furthermore, shared decision-making supports patients’ goals and expectations alignment with those of physicians (71, 74)
Goal alignment
Understanding what outcomes matter the most to patients promotes physicians' understanding of their goals and allows alignment of health services to patients’ actual needs. De facto, research shows that there is a mismatch between the actual goals of patients and what physicians believe they are, and on the concept of “value” in general (1, 17, 18, 51, 67). Van Deen et al. (2017) present a clear example of such discrepancy, by proving that while clinicians assume disease control to be the most relevant outcome, patients are more concerned with obtaining a better quality of life in general. The discrepancy could relate to the non-correspondence of clinical outcomes to patients’ perceptions of their illnesses or disabilities, as demonstrated by Matthews et al. (2019). Through involvement in the selection and use of PROMs, value-based health care should enable patients to play a role in their goal setting and attainment modality, promoting goal alignment (Elf et al., 2017). Tools for goal alignment exist already, such as the Goal Attainment Scaling (as cited in Elf et al., 2017), but this review did not identify any research on how they could positively interact with PROMs in VBHC.
24 forgotten that there is variability among outcome preferences, hence goals, within a patient sample (Wiering et al., 2017). Although Wiering et al. (2017) suggest that weighting PROM results based on expressed preferences could solve this problem, more research on the trade-off between identifying patients’ goals and feasibly evaluate and achieve them in clinical practice, should be conducted.
From the literature, there appears to be a fundamental overlap between patient involvement in decision-making, and clinical decision making (i.e., physician decision on what treatment to administer). Eight research articles (7, 46, 48, 49, 71, 74, 76, and 79) discussed how PROMs have the potential to facilitate both physicians' and patients’ decision-making, supposing a connection between them. A double-sided arrow indicates such a connection among patient engagement and clinical decision making in fig. 4.
3.2.3 Clinical decision-making
Fourteen articles acknowledged the role of PROMs in clinical decision-making. The routine collection and use of PROMs in clinical management appears to be able to guide clinicians in their decision making. Especially, the collection of PROMs at different points in time, thus before, during, and after the treatment process, supports communication and clinical decision-making through the whole care cycle (Zerillo et al., 2017). There are numerous examples of what kind of clinical decisions can be made with the aid of PROMs. Burnham et al. (2017) included in their research a series of case studies, where technologically advanced techniques were evaluated and selected by physicians based on the results of patient-reported outcome measures and cost analysis. The aim was to identify which techniques maximized value the most, although almost all of them had the potential to highly affect patient outcomes. Those technologies have significant initial costs that may be compensated through long-term cost savings and significant improvement in patient outcomes. Another example is from Nijagal et al. (2018), explaining how PROMs can allow capturing the possible negative outcomes of care better. They focus on chemoradiation induced deterioration of quality of life (QoL). By knowing the exact negative outcomes of specific treatments, clinicians are guided in their decision-making towards the most indicated therapy and, as already mentioned, such information can be shared with the patients to allow shared decision-making. Padilla et al. (2019), instead, used PROMs to evaluate the efficacy of total joint arthroplasty (TJA) for hip and knee joint diseases, recommending it in their study as the best treatment possible. Besides, Bonafede et al. (2019) and Voineskos et al. (2018), mention the importance of using PROM when other clinical outcomes place two treatments at the same level of effectiveness. Referencing Voineskos et al. (2018): “PROM data are also helpful when two or more surgical interventions are compared for equivalent survival and/or equivalent risk of adverse events” (p. 473).
25 evaluated (Visser et al., 2017). It is important to keep patients’ preferences into account in clinical decision making. Again, this shows the interconnectedness between how PROMs support clinical decision making and ease shared decision-making (Vetter & Cubbin, 2019). What is meaningful to patients should affect physicians’ decisions, thus, leading to improved communication through PROMs discussion and shared decision-making. Moreover, new technologies such as PROMIS can assist surgeons in developing robust shared decision-making processes and setting the right expectations (Bernstein et al., 2019)
3.2.4 Knowledge generation and learning
Eleven pieces of research defined PROMs as knowledge generation tools and facilitators for clinicians and organizational learning. PROM collection into the clinical routine can assist knowledge generation and learning processes. Such processes can both take place within the hospital setting, or among different institutions.
Internally, when PROMs are collected consistently and over time, they provide a set of information able to activate a continuous feedback loop on how the care process is working, allowing physicians to understand, learn from their mistakes, and improve overall quality delivered (Clement et al., 2015). Standardized sets of outcomes also contribute to knowledge creation and diffusion, easing users in the adoption of new measures (Squitieri et al., 2017). Nilsson et al. (2017) assert that performance does not automatically increase through outcome measurement because the obtained information needs to be elaborated and integrated into a learning process to lead to actual quality improvements. In the paper, they provide an example regarding the measurement of patient falls. When an increase in falls was reported by patients and registered, fall prevention would be increased as well, with immediate positive effects arising from the preventative efforts. The intervention contributed to spreading knowledge and promoting clinicians’ engagement through the hospital, further creating value for the patients.
26 Furthermore, outcome measures and PROMs favor learning among health systems by collecting quality information. The comparison of quality data among hospitals makes it possible to identify hospitals that provide higher value, and that can become an example for the others to learn. Therefore, benchmarking among health systems provides a learning opportunity to improve efficiency and effectiveness of care (Nijagal et al., 2018). The MB initiative, for example, by providing insights on relevant outcomes, acts as an incentive for hospital mutual learning and promotes the sharing of best practices among health centers. The measures offered by the MB highlight outcomes discrepancies that, in turn, cause individual centers to review their practices (van Veghel et al., 2016).
From the literature examined, a clear connection between knowledge generation and decision making appeared. The knowledge generated by PROMs collection and elaboration through learning becomes the base for the consequent clinical decision-making process. Such a connection is indicated by an arrow from the knowledge and learning box to the clinical decision-making one (fig. 4). As discussed above, another relation seems to exist between benchmarking and learning among institutions, but such a connection was not graphically included in the map due to the weak overlap in the literature.
3.2.5 Value-based payments
The last emergent result, only mentioned in six articles, was the possible effect of PROMs measurement on health care payment policies, such as value-based payment and reimbursement. PROMs have the potential to not only introduce the patient perspective to improve the quality delivered, but also to reduce the cost of care systematically (Squitieri et al., 2017). With the data they provide, they can concur to the creation of value-based payment program value-based on risk-adjusted provider’s performance (Andrawis et al., 2013; Teckie et al., 2014), such as pay-for-performance strategies (Parra et al., 2017). Even though, the use of PROMs in value-based payments requires a selection of appropriate measures that allow comparison of provider performance, and which results must be transparent to all stakeholders (Squitieri et al., 2017).
27 government pays for treatments that satisfy patients’ needs and deliver high value to them. Even if the theme of value-based payments was recurrent through the literature set, the incorporation of PROMs among outcome measures was mostly speculation still. As for now, value-based payment initiatives are only a few. The way hospitals are struggling to evaluate their costs, as demonstrated in the previous paragraph on value assessment, could partly be the cause behind the lack of real cases of value-based payment strategies.
28
29
3.3 Interviews content analysis
As mentioned in the methodology section, the interviews aimed to observe and reflect on whether possible uses of PROMs identified through the literature correspond to how hospitals adopt them in their VBHC programs. In both cases, the interviewees recognized the functions of the map to coincide with how PROMs are used in their hospitals, or how they are aspired to be used. What differed from one interview to the other was on which role the hospitals focused primarily on their daily use.
In the first interview, Sarah distinguished value assessment and benchmarking as the main objective of PROMs use in her hospital. She then stated that the next step planned was to move over to the use of PROMs in clinical decision-making and patient engagement, although not yet in function. Orthopaedic specialists direct the collection and analysis of PROMs among physicians, to look out for health-related “red flags”, but the outcomes are not yet discussed with patients during visits. Sarah pointed out that physicians currently struggle to interpret PROMs results for two reasons: the first one is the lack of disease specific reference values to compare the obtained results, as also identified by the literature, the second one is related to personal differences among patients, and the lack of information on their health status before the occurrence of a disease. To answer the second question, she classified knowledge generation and learning as a derivate of patient engagement and clinical decision making, while value-based payments as a subordinate of value assessment and benchmarking. The suggestion was to redefine the map by moving knowledge generation and learning, and value-based payments to a lower level, to indicate their dependence on other functions. Lastly, she confirmed that no possible functions were lacking in the map.
In the second interview, Laura answered the first question by stating that the map reflects the ambitions her hospital has on the use of PROMs. At the moment, their focus is patient engagement and clinical decision-making, in an attempt to make treatment more patient-centric. For this reason, one of the PROM tools in use was designed by the hospital itself, to reflect its patients’ population and their needs, contrarily to what was found through the literature review. When PROMs are used, the knowledge generated becomes part of the clinical decision-making process, also through specific physician meetings. The hospital has formal protocols on knowledge sharing and learning, but there is space for improvement. Although the hospital would like to use PROMs for value assessment and benchmarking, and to put in place value-based payment systems, those are only ideas for now. By what resulted from the literature, the hospital awareness of total care cost is approximate, as they mainly deal with complex diseases, for which aggregating costs across the care network is difficult. The answer to the second question was that the map does not need to be modified. The roles identified in it are all interconnected and equally necessary for the realization of true value-based health care, and thus should remain as they are, on a single level. Laura did not agree with the hierarchy among the functions and highlighted that the main roles that PROMs have in a hospital depend on its own goals.
31
4. Discussion and Conclusion
In this final section, the results of the study are discussed and interpreted. Then, limitations and suggestions for future research are proposed. Lastly, a conclusion to the study is provided.
4.1 Main findings and theoretical interpretation
The research addressed two broad research questions. The first question concerned the role of PROMs as outcome measures in VBCH and the extent of their diffusion. To answer this question, the characteristics of the sample were analyzed. The analysis confirmed what stated in the introduction, that is, interest on PROMs and their use is increasing year by year (Marshall et al., 2006), also in value-based healthcare initiatives. The 80% of articles in the set included PROMs as significant outcomes in VBHC, against only 20% that did not acknowledge them at all. Such increment was geographically concentrated in two nations, namely North America and the Netherlands, again in accordance with the literature included in the introduction (Black, 2013; van Veghel et al., 2016) that previously identified these countries as pioneers of VBHC. Then, all PROMs encompassed in the literature set were collected and compared among empirical and non-empirical articles, showing an overlap in outcome domains and tools among them, especially in the domains of pain and HRQoL/QoL. For empirical papers, the number of generic tools was higher than disease specific ones, while their amount was proportioned for non-empirical papers. Even though no patient engagement was found in the creation of new PROMs (as the set did not comprise any literature on new PROMs), patient involvement was a paramount subject among literature, in the more generic form of how PROMs promote patient engagement in their care cycle. Patient engagement was one of the emergent topics that contribute to the multiple roles that PROMs retain (or could retain) in VBHC, together with value assessment & benchmarking, clinical decision-making, knowledge generation & learning, and value-based payments. The emergent result supported and enlarged the possible beneficial appliances of PROMs, mentioned in the introduction, referencing Ackerman (2017). Moreover, the emergent results from literature seem to apply to hospitals in real life, as discussed through the interviews with professionals, that agreed on the multiple functionalities of PROMs.
32 Regarding the type of PROMs used, generic or disease specific, an important trade-off must be kept in mind for a successful establishment in clinical practice. Contrarily to the use of PROMs for research purposes only, a balance between standardization and sensitivity to patients’ personal needs must exist (Elf et al., 2017). The unbalance between generic and disease specific PROMs in empirical papers might be connected to such trade-off. Hence, generic PROMs are used more extensively in real life, as they are more adaptable, comparable, and easy to administer. As mentioned, no PROMs are being created specifically for VBHC projects, or at least the literature set did not contain any examples of it. What was clear from the set was a generalized effort towards standardization of measures, comparability, and the creation of standardized sets. Those efforts were especially represented by the articles on the creation of ICHOM standardized outcome sets (art. 1, 12, 16, 35, 41, 49, 58, 61, 79, and 78), which included patient participation and engagement in their generation process. Those articles demonstrated a diverse way of directly engaging patients in the outcome selection process, although they do not guarantee full representation of patients’ needs. Again, we have a proof of the difficult trade-off between selecting a multitude of disease specific domains to ensure perfect representation of a patient group, and the need for parsimony, focus, and comparability to allow the optimal employment of PROMs (de Roos et al., 2017).
Through the emergent results map it was possible to understand how, even if PROMs can be useful in multiple ways, implementation is at a primordial state and can be seen as a necessary “first step” towards VBHC systems. Each function is characterized by a “lack” or unclear aspect that needs to be figured out to allow that specific PROM role. For example, in value assessment and benchmarking, there is still no solution to the poverty of hospital cost awareness and PROM reference scores for an accurate evaluation in terms of quality over costs, as intended by Porter. Alternatively, for patient engagement, it remains unclear what role PREMs have and whether they should be included along with PROMs to enhance patient involvement, and so on. Explicit connections among functions emerged from the literature: a bilateral link between patient engagement and clinical decision-making, and a unilateral one among knowledge generation & learning and clinical decision-making. These links suggest an interconnection between functions or the possibility for one function to augment or complement the effects of the others. Other possible links were not included in the map, as there was not sufficient proof of their existence in the literature, but the possibility of their presence should be researched in the future.
33
4.2 Limitations and suggestions for future research
This review is subject to potential limitations. As in all reviews, there is a risk for incomplete retrieval of existing studies. Although the study used an inclusive and broad search criteria, there were time constraints which impact the completeness of the set. Furthermore, grey literature was not included, thus excluding all papers is still in the process of publication. Language biases might be present due to the choice of including only papers fully in English. Considering that a high number of the included articles originated from the Netherlands, excluding researches not in English might have further affected completeness. Due to the nature of the research itself, a master thesis, the review was conducted by a single reviewer. The presence of at least two reviewers is recommended for scoping reviews, as for all kinds of systematic literature reviews (Peters et al., 2015). A single reviewer only constitutes a limitation, due to the impossibility of the reviewer to discuss methodological choices and results with other researchers. Ultimately, the number of interviews conducted is a limitation to the study as well, since solely two participants were involved. The interviews have, in fact, to be considered only as consultations to discuss the emergent results further.
This scoping review provides a broader understanding of the role of PROMs in VBHC and presents the foundation for future research on the topic in the form of both literature reviews and empirical studies. More in-depth literature reviews, to overcome the previously identified limitations of the study are needed. A review on the multifunctional role of PROMs in VBHC, involving multiple reviewers and no time limit, is necessary to verify what outlined in this scoping review. Especially, seeing the speed at which researches on PROMs in VBHC are being published, and their increment in 2019, research from the present on is recommended to evaluate the progress in PROMs usage. Furthermore, additional research on specific factors promoting interest in VBHC and PROMs might shed light on the supposition of how the type of health care influences VBHC and PROMs appeal to institutions. Further research is needed on the emergent map, both on the single functions and their “lacks”, and on the map as a whole. More observational studies and interviews in multiple hospitals, possibly at an international level, should be conducted to allow for more generalizability of the results and to strengthen them. Specifically, more qualitative research on PROMs adoption in hospitals should be conducted regarding the multifunctional role of PROMs, their implementation process, and the influences of the type of VBHC project on it.
4.3 Conclusion
35
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