Lung cancer is the second most common cancer affecting men and women. Approximately 13% of all new cancers are lung cancer. Approximately 236,740 new cases were diagnosed in the United States alone in 2022.

Lung cancer accounts for approximately 25% of all cancer-related deaths in the United States. However, death rates from this disease have declined by 54% since 1990 in men and by 32% since 2002 in women. From 2015 to 2019, death rates in men with lung cancer decreased by 5% per year and death rates in women with lung cancer decreased by 4% per year. Research suggests that these declines are due to fewer people smoking, more people quitting smoking, and advances in diagnosis and treatment [1].

Incidence and mortality are highest in high-income countries such as those in Europe, North America, and Australia [2]. Survival is poor, with a median 5-year survival rate of 15% [3].

Lung cancer mainly occurs in the older adult population. Most people diagnosed with it are aged ≥65 years or older and few are younger than 45 years. The average age of patients at the time of diagnosis is approximately 70 years.

Initially, lung cancer is symptom free but nonspecific symptoms such as cough, pain, dyspnea, and hemoptysis appear later. Because of the initial symptom-free course, lung cancer is often diagnosed at an advanced stage, and its symptoms burden affects the quality of life [4]. In addition, survival-enhancing chemotherapy often has indicative adverse effects that affect quality of life [5].

Health-related quality of life (HRQoL) includes several domains that consider a patient’s overall perception of the impact of the disease or treatment on the physical, psychological, and social aspects of life [6].

Patient-reported outcome measures (PROMs) are outcomes related to their health status and are reported directly by the patient [7]. PROMs are tools used to assess patients’ views of their health status, including HRQoL, symptom status, physical function, and mental health [8]. They can be used in patient-physician communication and clinical decision-making. In addition, the increasing use of PROMs has contributed to the paradigm shift from disease-centered care to patient-centered care [9]. Randomized controlled trials comparing PROM-directed follow-up with usual care have demonstrated that integrating PROMs into care pathways is associated with improved symptom control, survival, and reduced emergency department attendance and hospitalizations [10-12]. Although electronic PROMs (ePROMs) monitoring is easily an essential part of value-based health care, to enable benchmarking with patients and colleagues from other hospitals, a set of standardized patient-centered outcome indicators should be defined in nonsmall cell lung cancer, which also makes digital monitoring of the quality of life of patients more manageable [12].

ePROMs can help clinicians to better understand patients’ overall care and monitor their progress. The data collected can also be used in research to help identify risk factors and better understand the outcomes associated with lung cancer. ePROMs can also be used to develop algorithms that can create individualized treatment plans for each patient and enable better tracking of outcome changes [7,10,11].

The inclusion of PROMs as end points in clinical trials is encouraged by the Food and Drug Administration, the European Medicines Agency [13], and scientific societies such as the European Society for Medical Oncology [14].

PROMs provide essential information about the impact of a disease or treatment on the patient while complementing other, more traditional outcome information, such as survival and time to symptom resolution [15].

With the transition to patient-centered care, there is a growing interest in the routine application of PROMs in clinical settings. However, implementing PROMs is challenging for patients, clinicians, and institutions wishing to use them [16]. Although PROMs have grown in popularity and are increasingly being used, the pioneers in PROM collection are mainly the United Kingdom, Sweden, Australia, parts of the United States, and Canada.

Our objective was to understand the challenges of implementing ePROMs to improve HRQoL through articles published in the last 5 years, posing four research questions:

We chose the scoping review methodology because it is more exploratory and less methodological than systematic reviews, which are essential to meet the study’s objectives. The research strategy was developed following the Arksey and O’Malley methodological framework [17], which proposes a transparent 5-stage process for replicating research strategies to increase the reliability of the results. The first stage clarifies and links the purpose of the study and the research questions; the second stage balances feasibility with the comprehensiveness of the research process; the third stage includes study selection; the fourth stage involves data mapping; and the fifth stage summarizes the findings.

This study aimed to review the literature to assess whether ePROMs help us understand the needs of patients and therefore make clinical decisions in this regard.

After determining the research questions, we developed a conceptual framework to define and map the critical concepts and identify research gaps that could hinder their use (Figure 1). The conceptual framework guided the analysis and systematic presentation of the summarized data. The 4 research questions constituted the main branches of the framework, and the extracted data were classified into the 4 types of articles chosen (systematic reviews, qualitative studies, implementation factors, and experiences) to relate the opinions of the authors to our research questions.

A literature search was conducted between January and December 2022 and included the Scopus, Web of Science, PubMed, CINAHL, and PsycINFO databases. Correct key terms are critical for facilitating maximum coverage of the related research literature [18]. Medical Subject Headings terminology (“PROMs” AND “outcomes” AND “cancer” AND “lung”) was used to increase the sensitivity of the search. We also examined the reference list of each article. In addition, we expanded our search by adding the following terms: patient-reported outcomes and quality improvement.

Scoping reviews [19] map the underlying concepts; therefore, defining methods is essential, as with other types of knowledge synthesis [20]. In 2015, the Joanna Briggs Institute published methodological guidelines [21]. This methodology involves incorporating a checklist to increase the transparency of the method, judge validity and reliability, and appropriately manage the search [22]. Among the existing forms of presentation, we focused on the revised and expanded PRISMA-RR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses for rapid reviews) [23], which illustrates the transparency of the item selection (Figure 2).

All the articles that met the inclusion criteria were subjected to information extraction. In addition, the inclusion criteria and the validity of the identified instruments were assessed (Table 1).

The collected articles were organized by author, title, year, country, and type of article. The selected articles included 42% (5/12) from the United Kingdom, 17% (2/12) from the Netherlands, and 8% (1/12) from each of the following country: Germany, Canada, Australia, the United States, and Italy. All studies reviewed contributed to understanding the complexity of applying ePROMs in routine clinical practice (Table 2).

The articles were classified according to study design:

Table 3 summarizes the authors’ contributions to the first research question. This grouping allowed us to identify an approach based on the line of inquiry.

ePROMs are an integrating and facilitating tool for communication, highlighting their importance in the relationship between palliative care and medical oncology. In addition, they facilitate the knowledge and management of outcomes obtained from patients so that patients, relatives, physicians, and even administrations or institutions have access to these data and can compare them, thus facilitating communication, improving quality of life, and generating lower costs.

We must emphasize that this tool, used in patients with rare diseases subject to palliative care, can facilitate communication and the physician-patient relationship. This specific way of obtaining information enhances, as we have seen, communication and therefore drives more timely care depending on the level of need. In oncology, there is no established routine for this collection of ePROMs; therefore, its application in this area is subject to study. Furthermore, its implementation improves clinical communication with better-structured data that facilitates interpretation. The patients who participated in some of the implementation programs confirmed that they were helpful, were easy to learn and use, and facilitated their communication with the health care team. We are also aware that their use automatically improves this process.

As this method becomes more familiar, physician-patient communication can be improved in the future.

Table 4 summarizes the authors’ contributions to the second research question. The collection of ePROMs helps better assess patient symptoms and functionality with greater accuracy and facilitates clinical decision-making. Measuring prognostic factors allows for a broader understanding and prediction of treatments’ toxic effects and survival, enabling physicians and patients to stop adverse treatments and make decisions earlier. According to various published studies, using ePROMs facilitates this decision-making because their recording can generate alerts, allowing health care workers to manage patients’ needs on time. With the collection of ePROMs, there is generally an improvement in patient-centered care and the entire decision-making process throughout the disease and treatment. In the pandemic and with the evolution of “digital health care,” this field has become a suitable and flexible alternative with the potential to soon become the standard of care. With these positive indicators, the current momentum demonstrates that models of implementation of this data collection system can add value to health care. The studies conclude that it improves the decision-making process and enhances dialogue and the depth of conversations, which is a factor of approximation in the physician-patient relationship. It improves feedback and facilitates better interpretation of the disease process, including improving survival and associated costs.

In Table 5, referring to the third research question, the author’s comments are as follows: the ePROMs are already being implemented in different areas, such as food and pharmaceuticals, as revealed by studies with benefits that are not immediate but long term [36]. However, the leading institutional barriers are the initial investment, which can be costly, and the data protection policy. In addition, the lack of time for proper care and literacy is considered a bidirectional barrier. On the other hand, factors such as patient reminders, a sense of self-control, and physician enthusiasm may be facilitating factors.

The large-scale experience implemented in the National Health Service indicates that a specialized and sensitized group is necessary for implementing these measures, such as 2 specialists in outcome management. On the other hand, the information collected allows for individual patient benefits as well as the collection of sufficient data to create institutional policies.

Initiatives such as those of the International Consortium for Health Outcomes Measurement and the Organisation for Economic Co-operation and Development have promoted the implementation of these policies, which is a positive aspect. However, organizational and institutional policies are required to implement the ePROM system successfully.

Cultural, institutional, and individual barriers require specific training to change the paradigm. However, the results are promising, as the exposed patients are usually satisfied with handling digital tools, whether through the web or applications.

Table 6 shows the authors’ conclusions on its routine application: (1) It is necessary to define what is to be measured, what type of patients will be exposed, and in which services these policies can be implemented. (2) Changing work culture is a barrier to implementation and creates resistance to change. The difficulty that some patients may face in accessing technology (without minimizing the capabilities of older adults) is an important point, as is the lack of cybersecurity confidence. (3) The use of ePROMs has been established in scientific research, particularly in drug studies, although it is still far from its broader use in clinical reality and routine use. Further investigation of their implementation is necessary for greater confidence and ability to change clinicians’ work. (4) Physicians and patients must maintain engagement so that they feel stimulated, and timely feedback is provided to patients.

Future research should highlight the advantages of quality of care, improved decision-making, better communication, and patient autonomy.

ePROMs are digital tools that enable patients to self-report their health status and outcomes. They can be used in various health care settings, including clinical trials, routine care, and population health management. They are designed to register patient-generated data that can be used to supplement clinical paper data and provide a broader picture of a patient’s health status.

These tools are typically web-based or mobile apps that patients can use to complete questionnaires or surveys regarding their symptoms, quality of life, and other health-related topics. Some examples of ePROMs are questionnaires to evaluate the pain, fatigue, or functional status of patients with chronic diseases; quality of life questionnaires for patients with cancer; and evaluations of outcomes after surgical intervention. These surveys measure patients’ perceptions and experiences of their health and treatment, rather than relying on clinical observations or testing. They can also be used to monitor the side effects of treatment or evaluate patient satisfaction.

Institutions and their digitization policies can act as both barriers and facilitators for implementing and using ePROMs. Some of the institutional barriers are a lack of infrastructure and resources to support the use of ePROMs, such as adequate internet connectivity and computer equipment, which can be especially detrimental for patients who live in rural or remote areas; limited technical expertise that may struggle to implement and maintain ePROMs; resistance to change and hesitation to adopt new technologies; costs for the initial implementation and subsequent maintenance, especially if the cost of purchasing or leasing hardware and software is taken into account; and data security concerns, mainly hacking and wrongfully accessing information provided by ePROMs, which can be a barrier to implementation. Implementing ePROMs has also proved more difficult in some medical specialties than in others. In some cases, this was due to the physician’s reluctance to use the International Consortium for Health Outcomes Measurement rule sets [37]. In addition, the history of some employees with previous attempts to implement and collect ePROMs created barriers to the success of this measurement [38].

Nevertheless, there are also several institutional facilitators: better funding through the daily development of telemedicine and broader use of information technologies; strong leadership and support from institutional leaders can help to promote the use of ePROMs and overcome resistance to change; having technical expertise in-house or through partnerships with health technology companies; and transparent policies and guidelines to ensure the safe and secure use of ePROMs, which can help to promote their adoption. ePROMs are preferable to paper-based methods because they improve data quality, result in similar or faster completion times and lower costs, and facilitate clinical decision-making and symptom management [39].

The efficacy of ePROMs depends on their use. When ePROMs are used in a specific patient population, their impact on patient outcomes is higher [40]. It is also necessary to provide patient feedback to make the data collected in this way more meaningful to patients. These ePROMs help patients gain autonomy and control over their current health problems, and reassurance that the clinical team is working around the clock to control any occurrence. This method also proved to be more productive and satisfactory for the professionals involved [40]. By storing data in a central database that is easily accessible through the health unit’s technological infrastructure, clinical information is available to the multidisciplinary team in real time and remotely. Thus, it allows clinicians to monitor the clinical evolution of patients even in an outpatient setting.

Not only do ePROMs help clinicians adequately track an individual patient’s outcome to aid treatment decision-making but they can also be used in quality improvement initiatives, including provider benchmarking. For this purpose, ePROMs can be used as performance indicators for health care institutions and organizations [39]. Furthermore, the inclusion of ePROMs as end points in clinical trials is encouraged by the Food and Drug Administration, the European Medicines Agency, and scientific societies, such as the European Society for Medical Oncology.

ePROMs improve clinical communication by allowing structured presentation of data, thereby facilitating their interpretation. This also permits the use of validated scales to assess patients’ symptomatic and functional control. In addition, patients receiving feedback from the system or health professionals after submitting the questionnaire revealed higher satisfaction levels with the team’s follow-up. ePROMs can facilitate communication between patients and health care providers in several ways:

Most patients exposed to ePROMs found it easy to learn and use, would recommend it to other patients, and would like to continue using it [41]. However, a small sample of patients still showed reluctance to accept the remote submission of the clinical questionnaires instead of the classic paper-and-pen version. Finally, there are concerns regarding data privacy and security. Time and energy are needed to ensure strict compliance with the committee framework and organizational policies and procedures [15].

Finally, an essential factor that might contribute to improved outcomes for patients with lung cancer in the care pathway is the fact that not only medical or physical problems are monitored but also much attention is paid to psychosocial, spiritual, and financial burden concerns about relatives and issues around palliative care and end-of-life dilemmas. Patients were more open to reporting on psychological issues and asking for psychological support using a remote digital monitoring system than during a face-to-face conversation in the physician’s office. ePROMs also lowered the bar to express concerns about palliative and end-of-life care. This results in earlier palliative interventions, which increase survival and quality of life of patients with lung cancer [12].

Overall, ePROMs can facilitate communication between patients and health care providers by providing complete and timely patient data, enabling remote monitoring, and allowing for more efficient assessments. However, it is essential to remember that ePROMs are not a substitute for clinical assessment and that health care providers should use ePROMs data in conjunction with other data and information sources when making decisions about patient care.

More evidence is required to support the routine application of ePROMs in health care settings. Although ePROMs have been shown to have many potential benefits, there is still a need for more research to demonstrate their effectiveness in real-world settings and to determine the optimal use of ePROMs in different settings and patient populations. In addition, further research is needed to understand how ePROMs can be integrated into clinical practice and how they can be used to improve patient outcomes, including the best ways to collect, analyze, and use the data generated by these tools; to determine the cost-effectiveness of ePROMs; and how they can be used to improve care while controlling costs.

It is also essential to consider that ePROMs are not a one-size-fits-all solution. Choosing the right ePROMs for specific settings, patient populations, and clinical questions is vital to obtain accurate, reliable, and valid results.

Although more evidence is needed to support the routine application of ePROMs, it is also essential to consider that ePROMs can be valuable tools for health care providers to use in specific scenarios. Therefore, one of the most important limitations of this study was the need for more research that shows results in this area, especially in implementing ePROMs in routine health care.

The systematic collection of remote ePROMs is an effective and valuable strategy for providing real-time clinical feedback to teams. In addition, it provides satisfaction to patients and professionals. They provide a more accurate view of health outcomes and obtain qualified data in real time. In addition, it allows for easier stratification of patients with multiple pathologies. Routine implementation of ePROMs is an effective and valuable strategy to provide real-time clinical feedback to teams, leading to increased satisfaction from both patients and professionals and optimizing better care for patients. Optimizing ePROMs leads to a more accurate view of health outcomes, ensuring quality and real-time patient health monitoring. It also allows stratifying patients based on their morbidity, creating specific follow-ups for their needs. Data privacy and security must be considered when using ePROMs to ensure compliance with the local entities. At least four barriers were identified: