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Exploring barriers and facilitators to capturing cancer stage at diagnosis in a population-based cancer registry: a cross-sectional survey of health information managers/clinical coders and multidisciplinary team members

Abstract

Background

Cancer stage is important to capture within population-based cancer registries (PBCRs) to facilitate recruitment to clinical trials, evaluate prevention programs, assess treatment impact, and forecast cancer service needs. However, capture of cancer stage at diagnosis in many PBCRs is low, stemming from missing data in cancer registrations from health services. This study aims to identify the barriers and facilitators faced by Health Information Managers (HIM)/Clinical Coders (CC) and key multidisciplinary team meeting (MDM) personnel when capturing cancer stage at diagnosis.

Method

A cross-sectional online survey was conducted with 167 HIM/CC and 58 key MDM personnel employed within Victorian hospitals. The survey included 8 descriptor questions, 12–14 5-point Likert questions and 2–3 free text questions. Free text questions were analysed using the Theoretical Domains Framework, while all other questions were analysed using descriptive statistics, Spearman rank or Kruskall-Wallis tests.

Results

For HIM/CC, barriers related to the theoretical domains of (i) environmental context and resources, with 87% of participants agreeing required information was not readily available, (ii) knowledge, with 46% of participants agreeing they worry about incorrectly coding stage and (iii) skills, with 42% of participants agreeing they were not confident and 37% feeling they had inadequate training. For key MDM personnel, barriers related to the theoretical domains of (i) environmental context and resources, with 50% of participants agreeing there were time constraints, and required information was not readily available (ii) goals, with 36% of participants agreeing capturing cancer stage is not a priority, and (iii) social/professional role and identity, with 36% of participants agreeing it was not their role to discuss and capture stage. Despite the barriers, over half of participants in both groups agreed recording stage at diagnosis was a vital task.

Conclusions

Resolving the barriers identified will require enhancing documentation available to, and the training received by, HIM/CC and encouraging MDM Chairs to ensure cancer stage is discussed and recorded adequately for all patients presented.

Peer Review reports

Introduction

Capturing cancer stage at diagnosis is important at both an individual patient and population level. At an individual level, capturing cancer stage at diagnosis enables patients to better understand their cancer diagnosis, health professionals to forecast cancer prognosis, determine the most appropriate treatments and facilitate participation in clinical trials. On a population level, capturing cancer stage at diagnosis enables researchers to recruit for clinical trials, evaluate the effectiveness of cancer screening and prevention programs, assess treatment impact and aid government bodies in forecasting cancer service needs and allocating resources. In addition, cancer stage is highly correlated with cancer mortality [1] and accounting for cancer stage is essential when developing strategies to improve cancer survival rates.

While some regions, like England, exhibit high completeness in recording cancer stage, it remains problematic for many population-based cancer registries (PBCRs) [2,3,4]. In Australia the lead cancer control agency to the Australian Government, Cancer Australia, has identified the lack of cancer stage data as a gap in Australia’s national cancer data [5]. Reporting of cancer stage at diagnosis to PBCRs is mandated in three Australian states (Victoria, South Australia and Western Australia) out of Australia’s six states and two territories. From the three states with mandated reporting of cancer stage at diagnosis, Victoria, which is located on the southeastern part of Australia, has the largest population of over 6.8 million people (as of June 2023) [6], although is the smallest in size- making up only 3% of Australia’s total area [7]. The health care landscape in Victoria is serviced by a fairly equal split of health services from the public (52%) and private (48%) sector [8].

The Victorian Cancer Registry (VCR) expects health services to provide either a complete stage group in accordance with the TNM classification system, or the building blocks for TNM classification system, such as the tumour size and degree of invasion (T), the degree of lymph node involvement (N) and the presence or absence of metastases (M). To ensure staging is coded as expected, VCR provides all health services with a user guide for the submission of cancer registrations, providing details on what should be recorded in the cancer registration [9]. However, despite the mandate to report stage in Victoria, an internal audit of over 60,000 cancer notifications for patients that were discharged from a health service in 2021 or 2022, concluded only 9.7% of the audited health service notifications had a valid stage recorded.

In hospitals, multidisciplinary team meetings (MDM) are recognised as the optimal setting for recording cancer stage. MDMs promote treating clinicians, pathologists and imaging specialists to review the tumour and determine a treatment plan based on the size, location and extent of spread of the tumour, components of the TNM staging system [10]. While evidence suggests cases discussed at MDMs are more likely to have complete staging, timely treatment access, and guideline-concordant treatment, [11] than those not presented at MDMs, there is also evidence cancer stage documentation in MDMs is variable [12]. The aim of this study is to understand the barriers and facilitators to capturing stage at diagnosis for Health Information Managers (HIM)/Clinical Coders (CC) and during MDMs for key MDM personnel.

Methods

Survey

The survey was designed implementing the Theoretical Domains Framework (TDF). The TDF was developed through international collaboration between behavioural scientists and implementation researchers [13, 14]. The framework consolidates theories relevant to behavioural and psychological processes determining the influences on healthcare practitioners’ behaviour. Constructs from these theories are grouped into domains, providing a theoretical lens to identify the determinants of behaviour. The survey included eight descriptor questions to define the participant’s role, if they worked in a public or private health service, if the health service was in a metropolitan or regional area and the level of experience of the participant. Both HIM/CC and key MDM personnel received 12 to 14 questions using a 5-point Likert scale, to assess potential barriers in capturing stage at diagnosis and two to three free text questions to record any other relevant information not included in the survey questions. The HIM/CC group received an additional 5 questions using a 5-point Likert scale to understand the databases and resources used to code cancer notifications.

Sampling

The survey was distributed via Qualtrics software (https://www.qualtrics.com/en-au/) to 167 HIM/CC who were registered on a Health Information Managers email distribution list, managed by the Victorian Agency for Health Information, in May/June 2023 and to 109 MDM personnel identified as being the Chair, contact person or database manager involved in melanoma, prostate, breast, lung and bowel MDMs identified by the Victorian Integrated Cancer Services in June 2023. The survey was distributed as wide as possible to obtain large enough sample sizes for downstream analyses and reduce sampling bias. The survey was closed on the 30th June with reminders being provided to the participants prior to the closing date. Participants were included in analyses only if they completed the barrier Likert scale questions or if they responded to the free text questions. For the barrier question analyses, responses from 11 HIM/CC and 36 key MDM personnel were excluded from analyses due to partial completion of the survey. For the barrier related free text questions, 39 HIM/CC and 23 key MDM personnel did not leave a comment and were therefore excluded.

Analysis

Descriptive statistics were conducted for both the HIM/CC and key MDM personnel groups. Responses to the 5-point Likert scale questions were grouped into the following categories: agree (scores 1–2), neither agree nor disagree (score 3), disagree (scores 4–5). For the HIM/CC group, Spearman rank tests were conducted to assess correlations for ordinal variables and participant demographics, while Kruskal–Wallis tests were conducted for nominal variables. Due to the poor response rate of the key MDM personnel (see Results section for further details) the resulting sample size of 22 participants was too small to provide enough power to conduct the correlation analyses. A power analyses conducted with the R package pwr indicated a sample size of 84 participants would be needed to detect a Spearman rank correlation of 0.3 with 80% power at an alpha level of 0.05. Therefore, only descriptive statistics were conducted for the key MDM personnel group. Free text fields were thematically coded using NVivo Version 12 software (QSR International Pty Ltd. Melbourne, Australia), according to the 12 domains of the TDF.

Results

The response rate for completion of the barrier survey questions was 93% (n = 156) for HIM/CC, and 20% (n = 22) for key MDM personnel. Barrier-related free text questions were completed by 77% (n = 128) of the HIM/CC and 60% (n = 35) of the key MDM personnel. Table 1 describes the characteristics of the HIM/CC and the key MDM personnel, including participants who responded to either the barrier Likert scale questions or to the barrier related free text questions. From the participants included in Table 1, most HIM/CC (95%; n = 148) were involved in coding all cancers and just over a third of key MDM personnel were responsible for the conduct of multiple cancer MDMs (36%; n = 15). Of the HIM/CC, only 5% did not routinely code. Of the key MDM personnel, 88% (n = 46) had greater than 5 years’ experience participating in MDMs, 63% (n = 26) were responsible for discussing cancer stage and did not record cancer stage in the MDM software and 76% (n = 31) had a position of consultant physician/surgeon. Of the 26 key MDM personnel that discussed stage, 27% (n = 7) reported stage was discussed less than 50% of the time at MDMs and 50% (n = 13) reported cancer stage was always discussed. For the 15 key MDM personnel responsible for recording cancer stage, 53% (n = 8) reported it always being recorded, 27% (n = 4) reported it being recorded on at least 50% of occasions, and 13% (n = 2) reported cancer stage was never recorded in a discrete field.

Table 1 Characteristics of survey participants

Barriers to capturing stage at diagnosis

Most of the barriers to capturing stage differed between the HIM/CC and the key MDM personnel (Fig. 1). For HIM/CC, the main self-reported barriers to coding cancer stage at diagnosis related to the theoretical domains of:

  1. (1)

    environmental context and resources: information not readily available to facilitate capturing of stage at diagnosis (86.5% participants strongly or somewhat agreed).

  2. (2)

    knowledge: worrying they would get the stage wrong (45.5% of participants strongly or somewhat agreed).

  3. (3)

    skills: not feeling confident in their ability (41.7% of participants strongly or somewhat agreed) and; feeling they had inadequate training to code stage correctly (36.6% of participants strongly or somewhat agreed).

Fig. 1
figure 1

Barriers to capturing stage at diagnosis identified by Health Information Managers (HIM)/Clinical Coders (CC) and key personnel participating in melanoma, prostate, breast, lung and bowel Multidisciplinary Team Meetings (MDM)

For the HIM/CC participants, there was weak significant positive correlation between the number of years’ experience and the worry of getting the coding wrong (Spearman’s rho = 0.162, p = 0.049), as well as not thinking to record stage (Spearman’s rho = 0.193, p = 0.019). Specifically, less experience in coding was correlated with higher levels of worry about incorrectly coding cancer stage and higher levels of not thinking about or being neutral to thinking about recording cancer stage (Table 2). No significant differences were detected for any of the barrier questions and participants working in metropolitan or regional areas. A significant difference was detected between participants working in public or private health settings and knowing where to record cancer stage (p = 0.035, Table 2), however the post hoc pairwise comparisons using Dunn’s test with a Bonferroni correction for multiple comparisons identified no significant differences between the participants working in public or private health services.

Table 2 Health Information Manager and Clinical Coder responses which exhibited significant correlation with participant’s experience level

For the key MDM personnel, the main self-reported barriers to collecting stage data at MDMs related to the theoretical domains of:

  1. (1)

    environmental context and resources: not enough time in MDMs to discuss and capture stage (50% of participants strongly or somewhat agreed); information is not readily available to facilitate capturing of stage at diagnosis (50% participants strongly or somewhat agreed); and insufficient resources to capture stage at MDMs (44.4% of participants somewhat agreed).

  2. (2)

    goals: discussing and capturing stage was not a priority in MDMs (36.3% of participants strongly or somewhat agreed).

  3. (3)

    social/professional role and identity: it was not their role to discuss and capture stage (36.3% of participants strongly or somewhat agreed; Fig. 1).

When given the option to provide free text comment on barriers, the most commonly reported issues raised by HIM/CC related to the domain of environmental context and resources, such as not seeing stage documented in health records, not having access to databases where it might be captured, not receiving this information when a person is transferred from another hospital and the patient administrative system not easily capturing the information. Skill and knowledge barriers were also identified by several HIM/CC, with a lack of training in cancer staging systems and not knowing where to look to find stage in the health record seen as barriers. A lack of positive (incentives) and negative (consequences) reinforcement was also identified as a reason for poor capture of stage by HIM/CC. Like HIM/CC, MDM participants emphasized the significance of environmental context and resources as barriers to capturing cancer stage. This included time constraints when discussing a large volume of cases within a specified period and necessary information for staging being unavailable at MDM discussions. A lack of knowledge on cancer staging by those responsible for documenting it and social influences dictating how stage is communicated in MDMs were also notable barriers to capturing it at the time of the MDM (Table 3).

Table 3 Comments regarding barriers to recording cancer stage at diagnosis in cancer registrations (coders) and MDM software (clinicians)

Facilitators to capturing stage at diagnosis

Both participant groups agreed recording stage at diagnosis was a vital task, with 57.7% of HIM/CC and 77.3% of key MDM personnel strongly or somewhat agreeing. There were many comments on needing to improve documentation of stage in MDM notes, correspondence, on patient health records and transfer documents, but few suggestions of how this might be undertaken. A template was proposed to reduce reliance on memory, and education and training of medical staff, pathologists, and HIM/CC to address gaps in knowledge and skill on how and what to report to facilitate accurate documentation by HIM/CC. In addressing deficits in environmental resources, HIM/CC suggested improving the patient administration system used to capture stage information.

MDM key personnel reported addressing barriers associated with environmental context and resources were important, such as improving the MDM software interface (in Victoria there are multiple MDM software systems in use, depending on the health service. Some health services use the same MDM software interface (EPIC) however this can be customised for each of the MDMs needs), providing funding support for administrative staff to assist with documentation; removing financial barriers which prevented a rebate being applied to repeat imaging procedures; and providing resources to reduce waiting time for imaging results, which often delay MDM discussion and treatment planning. Recognising the significance of the MDM Chair maintaining a distinct professional role and identity during meetings, with a focus on ensuring the recording of cancer stage for every patient, was acknowledged as a promoter of best practice. Table 4 provides examples of comments made by HIM/CC and key MDM personnel regarding facilitators of improved capture of cancer stage at diagnosis information.

Table 4 Comments regarding facilitators to recording cancer stage at diagnosis in cancer registrations (coders) and MDM software (clinicians)

Discussion

The recently published Australian Cancer Plan highlights the importance of administering high-calibre, patient-centric care in accordance with Optimal Care Pathways, wherein the stratification of care is delineated based on the stage of cancer [15]. Cancer Australia recognises there are significant gaps in cancer stage data, with current national reporting on distribution of cancer stage at diagnosis restricted to data collected on people diagnosed with cancer in 2011 [16]. Despite cancer stage at diagnosis holding crucial significance for patients, clinicians, health services and government, it is currently inadequately recorded and reported to Australian cancer registries. This study examined factors contributing to poor reporting of cancer stage data to the VCR, despite the legal mandate in Victoria to notify this information. Provision of insights will assist in planning interventions to rectify this situation in Victoria and will be useful for other PBCRs struggling to collect data on cancer stage at diagnosis. HIM/CC reported not being able to locate stage information in health records, not feeling confident to report it and worrying about incorrectly coding stage due to inadequate training. Key MDM personnel indicate time constraints due to patient volume, insufficient information available at the time of the MDM, competing priorities, and not being their responsibility to record stage, as barriers to capturing this information.

This study highlights that one of the main barriers identified by both HIM/CC and key MDM personnel is that information required to code or discuss/record cancer stage is not available when needed. While the same barrier was identified by both groups the mechanism creating this barrier is different. For MDM personnel the free text comments suggest that missing imaging results can cause a delay in being able to discuss/record a cancer stage. While for HIM/CC it was the absence of the recording of stage by clinicians in health records or lack of access to databases where cancer stage may have been recorded were the limiting factors.

Several studies have highlighted the challenges faced by HIM/CC in extracting vital clinical information from health records. Some of the ways in which this issue has improved is by the implementation of discharge summary templates and the employment of medical scribes. Requiring the use of discharge summary templates has demonstrated a twofold increase in the capture of crucial clinical details. Moreover, the combination of discharge summary templates with CC training has resulted in a further doubling of information capture [17]. Medical scribes, employed in the US, have enhanced documentation quality and increased providers' direct interaction time with patients [18]. Real-time clarification of issues with physicians by those responsible for clinical information documentation, appears an effective method for improvement [19]. In Australia, clinical documentation improvement (CDI) specialists, akin to U.S. scribes, are being introduced into hospitals to enhance documentation. While it is currently difficult to ascertain the number of hospitals within Australia employing CDI specialists, an industry survey run by Clinical Documentation Improvement Australia indicates over the past 2 years the percentage of participants reporting as new entrants into the field has remained steady and the number of teams in which the participants work in are growing [20]. CDI specialists translate complex clinical terms into coding language interpretable by HIM/CC [21]. If CDI specialists were available in all health services to interpret cancer stage data, make it accessible to HIM/CC and clarify missing or ambiguous cancer staging with the clinicians in real-time, we would likely see a major improvement of the notification of cancer stage to PBCRs. This would also help to alleviate the CC worry of incorrectly coding cancer stage as the information required would be provided in a consistent manner.

In addition to improving clinical documentation, it appears that HIM/CC need further support to improve their knowledge and increase their confidence in coding cancer stage. While VCR provide a user guide manual for health services submitting cancer notifications, it was refreshed following this survey in consultation with HIM/CC; and a fact sheet describing what to report for different scenarios that may arise, where to find information, and how to prioritise the different sources that may contain cancer stage information has been created. VCR staff are providing onsite training to health services interested in including specific training on coding cancer stage for their HIM/CC. A parallel project will be monitoring the effect of the additional training on reporting of cancer stage by the health services.

Currently in Victoria, as pointed out in a participant’s comments, there is a lack of incentives and/or consequences to reporting cancer stage to PBCRs. Recently, the Australian Council on Healthcare Standards (ACHS) introduced the quality indicator Staging information provided to new patients with cancer at this health care organisation [22], providing the framework required to at a minimum measure compliance at a health service level. Measuring compliance with this indicator will provide the impetus for healthcare organisations to put processes in place to clearly document cancer stage, such as employing CDIS, and hopefully ensure that the information is made accessible to HIM/CC. This quality indicator also provides the potential to introduce incentives or consequences for complying or not complying with the indicator.

The environmental context and resources barriers identified by the key MDM personnel of information not being available, having insufficient resources and not enough time likely coalesce into the attitudes of discussing and recording cancer stage is not a priority in a MDM and it is not their role as MDM members to do this work. Improving the environmental context and resources barriers identified will likely require an MDM restructure. However, providing MDM personnel with some education on why cancer data is important to record, what it is used for and how it in turn helps to improve cancer survival would likely improve the attitude towards feeling that recording cancer stage is not their priority or role Previous studies have determined interprofessional collaborative education sessions involving both HIM/CC and clinicians help to improve the availability of information required by HIM/CC for reporting purposes within the health records, by mutual understanding of the variables required for reporting and why they are important [23, 24]. These collaborative sessions have been reported to successfully occur within some Victorian health services with the aim of improving the quality of pressure injury coding [25]. Lessons learnt here could be applied in the oncology setting in addition.

The lack of documentation of stage information in MDMs is clearly a symptom of systemic issues likely created through the way MDMs are conducted. A systematic review of factors influencing the quality and functionality of oncology MDMs recommended that (1) decisions made during the MDM be documented, preferably by administrative staff using standardised documentation template during the meeting, and (2) a structured approach be made when presenting patient characteristics and preferences [26]. Standardising the documentation and patient presentation at an MDM and having the support of administrative staff could be a way to ensure cancer staging is always discussed and documented, especially if it is a mandatory field to complete in the MDM software. A study of MDM processes in Dutch hospitals found two thirds of tumour-specific MDMs had administrative support [27]. The importance of having administrative support before, during and after MDMs to ensure documentation of discussion and follow up has been identified in papers dating back to when MDMs were first established [28]. However, such resources are currently lacking across the Australian MDM landscape.

Internationally, there is recognition of the need to reform MDMs to cope with the rising incidence of cancer and the limited time available to present and discuss cases in meetings. Perhaps the most important advance in reducing the MDM burden has been seen in the United Kingdom (UK), where caseload streamlining has been introduced to save time and resources, ensuring specialists focus on complex cases and less complex cases follow a predetermined pathway [29]. Minimum requirements must be met to be placed on a predetermined pathway, including recording of cancer stage and other core data elements. While reducing MDM burden, documentation continues to improve. This intervention would take some time to introduce in Australia. However, a promising way forward in the short term involves the MDM Chair clearly emphasising the significance of clinical staff engaging in discussions about cancer stage, while concurrently emphasising the crucial role of accurately documenting these discussions.

Some of the potential interventions discussed above require funding to achieve. The issue of how best to fund the collection of high-quality data is complex. Both MDM teams and HIM/CC are challenged in terms of having limited time to generate the data among their other duties. A study of chronic disease MDM structure in UK hospitals identified all cancer teams had dedicated MDM coordinators but not the model by which this was supported [30]. Dedicated resources are required, at least until capture of stage data is embedded in routine practice, to ensure it is well-documented in various MDM software and accessible to HIM/CC.

Limitations

There are several limitations to this research. The poor response rate from the key MDM personnel significantly reduced the sample size of this group. This means we may not have captured a representative sample of opinions and attitudes towards barriers in capturing cancer stage for MDM personnel, especially since the majority of participants were consultant physicians/surgeons. In addition, there were unbalanced small sample sizes in the HIM/CC group, with most CC participants having more than 5 years’ experience and working in public hospitals.

The discrepancy between the Kruskall-Wallis analyses exhibiting global significance but the post-hoc Dunn’s test not identifying any significant differences between the groups can be attributed to the small sample sizes and unequal group sizes in this study, which likely reduced the statistical power of the pairwise comparisons. As a result, even though a global difference was detected by the Kruskal–Wallis test, the pairwise comparisons did not achieve significance due to the limitations in power. Smaller sample sizes typically reduce the ability to detect smaller effects, and the unbalanced sample sizes further compounded this issue by giving more weight to the larger groups and less reliable estimates from the smaller groups.

Conclusion

Australian cancer policy and Victorian legislation recognise the importance of capturing cancer stage at diagnosis, however this is not currently recorded well within Australia. Our findings indicate the main barriers reporting cancer stage for HIM/CC are related to limitations in environmental context and resources, skills and knowledge, while the main barriers for discussing and recording cancer stage for key MDM personnel are related to limitations in environmental context and resources, misaligned goals and not associating the task as part of their social/professional role and identity. Some useful strategies to help negate some of these barriers are: (i) implementing specific cancer stage coding training for HIM/CC and better instructional documentation, (ii) improving the documentation of cancer stage in patients health records, (iii) opening education sessions between HIM/CC and clinicians to demonstrate requirements for reporting and the value of collecting cancer stage, (iv) encouraging the MDM Chair to enforce the fulfilment of cancer stage data fields in MDM software and (v) make the cancer staging fields in the MDM software mandatory to complete. Future research should consider MDM funding models and the impacts of MDM streamlining. For cancer outcomes and survival to be better understood we must be able to measure cancer stage at diagnosis.

Data availability

The data for this study will not be shared, as we do not have permission from the participants or ethics approval to do so.

Abbreviations

CC:

Clinical Coder

CDI:

Clinical documentation improvement

HIM:

Health Information Manager

MDM:

Multidisciplinary Team Meeting

PBCR:

Population-based cancer registries

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Acknowledgements

We would like to acknowledge the Victorian Integrated Cancer Services and the Victorian Agency for Health Information for identifying potential survey participants. We acknowledge the Health Information Managers, Clinical Coders and key MDM personnel who participated in our survey.

Funding

This study was supported by the Victorian Department of Health.

Author information

Authors and Affiliations

Authors

Contributions

Conceptualisation and study design: LW, KI, LN, CR, FK, KB, PC, KD, CH, VY, JL, LtM, BY, SME. Data analysis and interpretation: LW, SME. Manuscript preparation: LW, SME. All authors have read and approved the final manuscript prior to submission.

Corresponding author

Correspondence to Laura Woodings.

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This project was approved by Cancer Council Victoria Human Research Ethics Committee (HRE 2308/2023) and conducted according to the Declaration of Helsinki. Prior to commencement of the survey, all participants were informed of the aims of the study and provided the contact details of the principal investigator to further discuss the study or their involvement. The survey was completed anonymously, and no vulnerable populations were surveyed. Implied consent was obtained, meaning by completing and submitting the survey, respondents gave their consent to participate in the study. All survey participants took part voluntarily and were free to stop or withdraw from the survey at any time.

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Woodings, L., Ivanova, K., Nolte, L. et al. Exploring barriers and facilitators to capturing cancer stage at diagnosis in a population-based cancer registry: a cross-sectional survey of health information managers/clinical coders and multidisciplinary team members. BMC Health Serv Res 25, 624 (2025). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12913-025-12564-5

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  • DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12913-025-12564-5

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