Changes in the quality of cancer care as assessed through performance indicators during the first wave of the COVID-19 pandemic in 2020: a scoping review

The COVID-19 outbreak was declared a public health emergency of international concern by the World Health Organization on the 30^th of January, 2020 [1]. Since the beginning of the pandemic, health systems have struggled to cope with the high numbers of people infected with SARS-CoV-2, while maintaining adequate care for people with other conditions [2].

Cancer is the second cause of death in Organisation for Economic Co-operation and Development (OECD) countries [3], comprising a high burden on OECD’s health systems. The COVID-19 pandemic has widely affected cancer care delivery in these countries. Substantial declines in the number of cancer diagnoses have been reported in the Netherlands [4‐6], Spain [7], Belgium [8], and Denmark [9]. While trying to minimize the risk of COVID-19 disease in cancer patients, changes in practice were pursued by oncologists, according to each setting’s capacity and recommendations released by oncology societies [10‐12]. Changes in the treatments prescribed were also reported [13].

Improving cancer care was already on the international health agenda before this pandemic, namely in the 2030 Agenda for Sustainable Development adopted in 2015 at the United Nations Sustainable Development Summit [14], in the Resolution “Cancer prevention and control in the context of an integrated approach” approved in 2017 by the World Health Assembly [15]. At the same time, systematic efforts to capture the outcomes of cancer care globally are in place such as the CONCORD study [16, 17] (via cancer registries), OECD reports on cancer care as part of its Health at a Glance series [3] and several European Union (joint) actions [18]. During the COVID-19 pandemic, efforts continued to be pursued to improve prevention, diagnostics, treatment, and the quality of life of cancer patients and to monitor and report upon inequalities, such as the “Europe's Beating Cancer Plan” [19], the European Cancer Inequalities Registry [20] and the launch of the European Commission’s Knowledge Centre on Cancer [21]. These efforts are necessary to address the backlog this pandemic is creating [22‐24].

Healthcare performance measurement is key to evaluate and improve healthcare systems, informing policy decisions and quality of care improvement initiatives [25]. Healthcare quality indicators are “quantitative measures that provide information about the effectiveness, safety and/or people-centeredness of care” [26]. The development of performance indicators following fit for purpose and use considerations [27] underpinned by robust health information systems is key to monitoring changes in care quality during crises, allowing for comparisons within and between countries’ health systems [28]. A common conceptual framework for health system performance measurement developed by the OECD aims to help member countries to prioritize areas to improve quality of care [29]. Indicators monitoring cancer patients’ outcomes, like 5-year survival, are already routinely used in OECD countries [3]. However, although improving outcomes is the ultimate aim, for guiding health care delivery systems towards that goal, process and cancer-pathway based information is essential. Therefore, indicators should ideally inform on the whole pathway of care, which is a reality in a few OECD countries [30]. Additionally, only a small percentage of scientific literature assessed in a previous review focused on hospital performance indicators [31] considered a clinical pathway perspective.

In this study, we focus on the cancer care pathway in OECD countries, which share a common conceptual framework for health system performance measurement [29]. Additionally, considering that the literature published on the consequences of the pandemic on cancer care is vast, assessing its impact requires a structured approach. Thus, this study aims to: 1) provide a structured summary of cancer care performance indicators used in the literature, regarding various cancers, across the care pathway, from early detection to outcomes, within OECD member countries; 2) assess the main trends of the changes in the quality of cancer care during the first wave of the COVID-19 pandemic, from January to June 2020, in these countries.

We conducted a scoping review, following Arksey and O’Malley methodological framework [32], further developed by Levac et al. [33]. Given the heterogeneous methods across countries for data collection on health care system performance and their translation to indicators [28, 34], a scoping review methodology allows to map large sums and heterogeneity of literature available [33, 35, 36], namely cancer care performance indicators. It also enables the reporting of emerging evidence [35], to summarize, and communicate findings [32], including trends revealed by indicators. The PRISMA extension for scoping reviews [37] was used for reporting (Additional file 1).

Database searches retrieved 6277 articles. Of these articles, 838 met the inclusion criteria, from which 197 articles on cancer care were identified. Eight records were identified via hand-searching. After full-text screening, 135 articles were included in this study (From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. doi: 10.1136/bmj.n71. http://​www.​prisma-statement.​org/​Fig. 1.)

In this study, we performed a scoping review to identify the indicators used in the literature to measure the impact of the COVID-19 pandemic on the cancer care pathway from January to June 2020, and the changes in the quality of care signalled by these indicators in OECD countries. We identified 135 articles, with a total of 1013 quantitative indicators collected, reporting on 94 countries. Changes in the quality of care are spread across the care pathway. This performance information suggests capacity constraints, it shows quick adaptations and innovations in cancer management. If collected in near-real-time and processed into actionable information, it would allow monitoring changes in care during the current pandemic and in future events more efficiently, supporting timely and adequate responses.

Our findings signal a major impact on the diagnosis of cancer: a decreasing trend in the number of screenings, diagnostic procedures, and, consequently, in the number of cancer diagnoses, resulting in increasing screening detection rates, and delays in diagnostic care. Indeed, in a recent OECD report, reductions in screening rates were reported by 15 out of 16 OECD countries that had data available and a decline in the number of new diagnoses was reported in the 12 countries with information available [168]. The cancelation of elective procedures [22], and patients’ avoidance of going to healthcare facilities [169, 170]were other contributing factors. Previous studies documented the decreasing number of primary care consultations for a wide range of clinical conditions [171, 172] and a relevant fall in new cancer diagnoses in primary care [83].

Trends regarding cancer staging at diagnosis portray a mixed picture. The reduction in the number of elective diagnostic procedures could explain stage-shifts in cancer presentation. We also found an increasing trend in the proportion of urgent/emergent cancer referrals and in the proportion of emergent procedures, as well as evidence of patients presenting with more clinically advanced conditions to the hospital than before the pandemic. These trends suggest patients with advanced-stage cancers continued to seek care. It could also signal that those patients waited longer before receiving care, with potential deleterious outcomes. These results highlight the need to closely monitor the impact of the COVID-19 pandemic on shifts in cancer staging at diagnosis and the relevance of collecting this data systematically, which is a reality only in a few OECD countries, such as the Netherlands and Slovenia [168].

With respect to treatment, about 40% of the indicators reporting on waiting times to treatment signalled an increasing trend, we observe a decreasing trend in the volume of the three modalities of cancer treatment, and a large number and diversity of information reporting on treatment changes. These results reveal the remarkable influence of the pandemic on patterns of cancer care in the first half of 2020. These changes result from postponements of care decided by physicians to decrease patients’ exposure to hospitals [120], switch to audio- or video-consultations, and deferrals and treatment modifications guided by updated recommendations by many medical societies [11, 12], which were used by some OECD countries at a national level [168]. Almost two-thirds of the indicators reported changes in treatment, which shows that providers have quickly adapted their care practices, which strengthens the argument for the need for monitoring closely these changes. The relevant number of indicators collected from surveys, mostly conducted by international societies and networks of providers, highlight how medical societies and countries were unable to obtain these data using current health information systems and data infrastructures. While some of these care modifications could be learning opportunities for the future, this information should be standardised, transparent, and timely, allowing to appraise the modifications in care provided during crises regarding access, quality, and outcomes.

The increase in telemedicine utilization we report is a generalized trend across a range of medical specialties [3] and it constitutes a hallmark of the innovation triggered by this pandemic. Albeit the positive feedback by physicians and patients we report, telehealth risks to increase inequalities in access to care [173, 174].

Short-term oncological outcomes were addressed by a few indicators and are reported as being stable, which is in line with a recent international cohort study including 61 countries and 15 tumor types [22]. However, deferred care will most likely lead to worse long-term outcomes, which needs to be monitored. Attempts to quantify this impact were developed, for instance, by a British nation-wide modelling study where the authors estimated a total of 59 204–63 229 additional years of life lost attributed to four major cancers [175], compared with pre-pandemic data.

Previous works addressed the impact of the COVID-19 pandemic on regional or national settings [4, 57], on specific cancers [4, 5, 176], specific stages of the care pathway [61], or treatment modalities [22]. This scoping review provides a summary of cancer care performance indicators, concerning various diseases, from early detection to the treatment phase of the care pathway, within OECD countries. Additionally, we report changes in the quality of cancer care based on indicators’ trends, from January to June 2020, which constitutes an innovative approach to assess changes in healthcare performance.

Our study has some limitations. The heterogeneity of study designs, populations, diseases, indicators, indicators’ definitions and distribution of studies per country do not allow the application of a meta-analysis approach to quantify the real impact of the pandemic on cancer care and the generalization of these trends to all included countries. Furthermore, the time needed to collect, organize, and synthesize a relevant number of indicators in a meaningful way to inform decision-making explains why this study reports on the first semester of 2020. Nevertheless, this study presents a comprehensive overview of the cancer care pathway and the modifications and adaptations that occurred during this period in a broad range of countries. The indicators we collated could already comprise useful tools to assess the health systems’ response and changes in the quality of care after this period.

The COVID-19 pandemic keeps evolving until the present time and postponing of care was reported in some countries by the end of 2021 and the beginning of 2022 [177, 178], which means that this impact is adding up. Figures concerning new COVID-19 cases, mortality, and vaccination coverage, are presented daily to the public since the beginning of 2020. Additional and considerable efforts are needed to expose the effects caused by this pandemic in non-COVID-19 care, and some of the indicators we present could be useful to convey that message. Care inequalities could have been exacerbated during this pandemic, which also needs to be further studied regarding cancer care.

As new waves keep evolving, it is crucial to monitor performance indicators, such as shifts in cancer staging or worsening of outcomes. Also, the link between structure, process, and (short- and long-term) outcome indicators should be undertaken to allow an accurate and timely evaluation of the changes in the care provided during crises and in regular times. Tools like the “Time to Act Data Navigator” [179] developed by the European Cancer Organization and the “Global Cancer Observatory” [180] signal the ambition to address this lack of standardised and regular collection of data and indicators. Within the scope of Europe’s Beating Cancer Plan, the European Cancer Inequalities Registry [20] aims to monitor inequalities across Europe, by providing reliable data on cancer prevention and care.

This scoping review provides a structured summary of performance indicators used in the literature to assess the cancer care pathway from January 2020 to June 2020, and the changes in the quality of care signalled by these indicators in OECD countries. This study shows health systems have struggled to ensure the continuity of care to cancer patients. It also highlights adaptations and innovations in cancer management, as well as the importance of monitoring these changes closely, notably during crises. These performance measures could inform on the bottlenecks of the cancer care pathway, as well as moments for intervention during the evolving pandemic and in future crises. Furthermore, it could contribute to identifying disparities between and within countries and to better address the backlog this pandemic has created. To ensure the continuity of regular care pathways and enhance health systems’ resilience and adaptability, further research and investment are necessary. It is critical to develop system-wide oriented intelligence and strengthen data infrastructures worldwide to constantly monitor changes in care provision. This would support timely and adequate health policy responses and improve the preparedness for future crises.