Article Text
Abstract
Background Digital health technologies (DHTs) play a crucial role in symptom management, particularly in palliative care, by providing patients with accessible tools to monitor and manage their symptoms effectively. The aim of this systematic review was to examine and synthesise the scientific literature on DHTs for symptom management in palliative oncology care.
Methods A systematic review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for systematic reviews and meta-analyses from 2 June to 20 June 2024. Databases including Scopus, Web of Science, ScienceDirect, PubMed and the Cochrane Library were searched. Data were extracted using a standardised form based on the PICOTT (Population, Intervention, Comparison, Outcome, Type and Technology) framework. The quality of the included studies was assessed using the Appraisal of Guidelines for Research & Evaluation (AGREE) II tool during the selection process.
Results The systematic review included seven articles describing six DHTs from five countries: the UK, Kenya, Tanzania, the Netherlands and the USA. The findings of this comprehensive literature review elucidate four principal themes: the specific types of DHTs used for symptom management in palliative cancer care, their roles and advantages, as well as the factors that limit or promote their adoption by patients and healthcare professionals.
Conclusion The findings of this review give valuable insights into the ongoing discourse on integrating digital health solutions into palliative care practices, highlighting its potential role in enhancing symptom management within palliative cancer care and showcasing its possible benefits while also identifying key factors influencing their adoption among patients and healthcare professionals.
- Pain
- Palliative care
- Cancer
- Symptoms and symptom management
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Digital health is an expanding field that provides innovative solutions to enhance palliative care delivery through improved efficiency, accessibility and effectiveness.
WHAT THIS STUDY ADDS
This systematic review provides an overview of what digital health technologies are used for symptom management in palliative oncology care, their functions, benefits, efficiency as well as potential factors that influence their adoption by patients and healthcare professionals.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The results of this review could be instrumental for policymakers, clinicians and health technology developers in the design, implementation and evaluation of appropriate and effective digital solutions for managing bothersome symptoms in palliative care patients with cancer.
Introduction
Digital health is a swiftly expanding field that presents dynamic opportunities for innovation and enhancements in health services.1 It aims to enhance the efficiency, accessibility and effectiveness of healthcare by using digital technology to gather, analyse, manage and distribute health data.1 Digital health technologies (DHTs) encompasses mobile health applications, electronic health records, telehealth, human-machine interaction, wearable sensors, artificial intelligence and other types of DHTs.1 2
Digital health interventions are increasingly crucial for adults, children and young people undergoing cancer treatment and palliative care (PC).2 3 Indeed, the WHO has advocated for 80% availability of accessible technologies to address non-communicable diseases, such as cancer.4
According to the WHO’s Global Cancer Statistics report, 20 million new cancer cases and 9.7 million cancer deaths were recorded worldwide in 2022.5 About 53.5 million people were estimated to be alive 5 years post-diagnosis.6 Regional variations exist, with Africa and Asia experiencing higher death rates due to late-stage diagnosis. Europe reports 22.4% of global cancer cases and 20.4% of deaths, despite having only 9.6% of the world’s population.5 Future projections indicate over 35 million new cancer cases will occur in 2050, with a 77% increase from the 20 million cases estimated in 2022.5 Regionally, the most significant rise in incidence will occur in high and very high Human Development Index (HDI) countries, including China, with an additional 4.8 and 3.9 million cases, respectively. Lower HDI regions will see a 142% increase, from 0.8 million cases in 2022 to 2 million in 2050, while medium HDI countries, like India, will witness nearly a 100% increase, doubling from 2.4 million to 4.8 million cases.5
In this regard, provision and accessibility of pain management and PC becomes highly required as pain is reported to be experienced by 55% of patients undergoing anticancer treatment and by 66% of patients who have advanced, metastatic or terminal disease.7 Patients with advanced palliative cancer experience a range of symptoms, with the most distressing being pain, fatigue and anxiety.8 Other common symptoms include loss of appetite, dyspnoea, constipation and nausea.9
Pain is a frequently experienced and poorly managed symptom in patients with cancer.10 11 More than two-thirds of patients will suffer from pain in the final stages of their cancer.12 Pain significantly contributes to suffering and adversely affects their quality of life, often resulting in unplanned hospital admissions due to unmanaged symptoms.10 13
PC aims to improve the quality of life for patients dealing with serious or life-threatening illnesses, such as cancer.14 The WHO has reported that each year an estimated 56.8 million people are in need of PC, most of whom live in low- and middle-income countries.15 While availability and access to this care varies. Overall, high-income countries, especially in Europe, over two-thirds of the countries, offer PC in both community or home-based care settings and in primary healthcare settings.15 In contrast, in low-income countries, only 19% have PC available in primary healthcare settings and 10% in community or home settings.15 A similar disparity exists in the Southeast Asia region, where 55% of countries report PC availability in primary healthcare settings, compared with 36% in community or home-based settings.15
To improve accessibility and effective PC and pain management for patients with cancer, the use of technologies to facilitate this process is a growing area of interest for patients, caregivers and policymakers. Research suggests that remote symptom monitoring significantly enhances care for patients with palliative needs, leading to improved outcomes in cancer symptom management.16 17 Electronic self-monitoring enables patients to track pain fluctuations and their connections to factors such as medication intake and daily activities.11 16 Healthcare technologies facilitate effective self-management by providing organised data access for both patients and healthcare professionals.18 These approaches not only aid in monitoring and controlling symptoms but also promote treatment adherence and expand healthcare accessibility across diverse patient populations.19 No evidence to our knowledge has explored these technologies and their benefits in managing pain and different symptoms in palliative cancer care. This systematic review aims to fill this knowledge gap and offers a review of the adoption of these technologies and the evidence surrounding their effectiveness.
Objectives
This systematic review aims to:
Identify the DHTs used to manage symptoms, particularly pain, in palliative cancer care.
Evaluate the advantages of DHTs in managing symptoms in patients with cancer requiring PC.
Explore the factors influencing the adoption of DHTs in palliative oncology care among patients and healthcare professionals.
Material and methods
Study design
This systematic review aimed to identify DHTs used for symptoms management (especially pain) in PC patients with cancer, focusing on their effectiveness and the factors influencing their adoption by patients and healthcare professionals. The study adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, 2020 edition.
Search strategy
We conducted a comprehensive search through Scopus, Web of Science, ScienceDirect, PubMed and the Cochrane Library between 2 June 2024 and 20 June 2024, using the following keywords: (‘Palliative care’ OR ‘palliative cancer care’) AND (‘eHealth’ OR ‘digital health’) AND (‘pain management’ OR ‘symptom monitoring’). The PRISMA flow diagram illustrating the flow of information through the different phases of the review is included in figure 1.
Inclusion and exclusion criteria
Inclusion criteria encompassed peer-reviewed articles employing qualitative, quantitative and mixed methods, and research focusing on DHTs for symptoms management in palliative oncology care. The search was limited to articles published (full text available) between 2013 and 2023 and restricted to English-language publications.
Exclusion criteria included non-peer-reviewed articles, conference abstracts, reviews, meta-analysis, research programmes and study protocols and articles not focused on DHTs used to manage symptoms in palliative oncology care.
Selection process
After searching all the databases and removing duplicates, we first screened the titles and abstracts of the identified studies to check their relevance to the topic, excluding those deemed irrelevant. Second, we obtained the full texts of studies that appeared to meet the inclusion criteria. The researchers then examined all the retrieved articles separately for relevance. Discrepancies were resolved through discussion and consensus.
Data extraction and quality assessment
Data were extracted using a standardised form based on the PICOT framework (Population, Intervention, Comparison, Outcome and Type).20 To meet our research objective, we included a second ‘T’ (PICOTT) to denote the technology used.
The research team maintained rigour and avoided biases during data collection through the strict following of the clearly defined inclusion and exclusion criteria to curb selection bias, and the use of multiple databases to ensure comprehensive coverage and identification of all relevant studies. Additionally, to eliminate interpretation bias, a reading committee consisting of four members evaluated and synthesised the studies to guarantee an objective interpretation. Furthermore, to ensure intercoder reliability of data extraction, the research team members independently and concurrently analysed the included studies, and any discrepancies were resolved through discussion and consensus.
The final step of the selection process involved assessing the quality of the included studies with the Appraisal of Guidelines for Research & Evaluation (AGREE)II tool. Originally developed by Brouwers et al and updated in 2016 to enhance accuracy and neutrality, this tool includes 23 items distributed across six domains: scope and purpose, stakeholder involvement, rigour of development, clarity of presentation, applicability and editorial independence. Every item is rated on a Likert scale from 1 (strongly disagree) to 7 (strongly agree).21 The scores of the quality appraisal results from the selected studies are illustrated in table 1.
Results
Article selection
A total of seven papers adhered to the selection criteria and were included and examined in this study. The studies included originated from five countries: the UK, Kenya, Tanzania, the Netherlands and the USA. With two articles originating from the UK, two from the USA, two articles from the African region and one from the Netherlands. The studies were published in various years, including one from 2016 (Hochstenbach et al), three from 2020 (Hackett et al, Ingram et al and Wilkie et al), one from 2022 (Ho et al) and one from 2023 (Cornetta et al). Most papers focused on the development and testing of DHTs.11 22–26. Table 2 presents study characteristics relevant to the purpose of this review.
The results of this systematic literature review highlight the following themes: types of DHTs used to manage symptoms in palliative cancer care, their functions, their benefits and the factors influencing their adoption by patients and healthcare professionals.
Types of DHTs reported in the studies included
Mobile/web health applications
PainCheck
PainCheck is an information and communication technology system designed to regularly assess and monitor pain in patients in the late stages of cancer. The system is the outcome of a significant research initiative (IMPACCT (Improving the Management of Pain From Advanced Cancer in the Community; ISRCTN registry No. 18281 271)) conducted in the UK. The software development team comprised three developers and a business analyst, all proficient in agile methodologies. Development adhered to the Disciplined Agile Delivery framework, a structured approach used by software developers to direct the creation of information and communication technology systems from initial conception through implementation to eventual retirement. The application questions are derived from the Brief Pain Inventory and the Coping Strategies Questionnaire.10
Mobile Palliative Care Link
Mobile Palliative Care Link (mPCL) is a user-focused mobile/web application developed to enhance symptom management and quality of life for patients with cancer by facilitating remote, real-time symptom assessment and interdisciplinary care coordination. The mPCL was developed based on the African Palliative Care Outcome Scale and uses CommCare, a secure, cloud-based, open-source platform. It can be accessed via a native Android application or a web browser and supports both online and offline data collection in areas with limited connectivity.23
A mobile application connected to a web application
It is a mobile phone and web-based self-management support application for patients and nurses that uses the Numerical Rating Scale. The application was developed as part of an iterative co-creative development process involving healthcare workers, patients, researchers and technical experts.11
PAINRelieveIt
PAINRelieveIt is a web-based application for pain management that offers a systematic approach to improving cancer pain outcomes. The application equips patients with suitable language for reporting pain and provides clinicians with a clinical decision aid to facilitate the prescription of analgesics. It incorporates the McGill Pain Questionnaire, Pain Management Index and the Barriers Questionnaire-13 to enhance its effectiveness.22
Digital platform
The Palliative/End-of-Life/Assessment/Care Coordination/Evidence-Based Programme
Palliative/End-of-Life/Assessment/Care Coordination/Evidence-Based Programme (PEACE) is an interactive platform designed to improve PC by monitoring symptoms and supporting patients through technology-assisted condition management and care pathway protocols. It also alerts the PC team when intervention is required.24
Telehealth
Cornetta et al27 established a weekly follow-up programme to evaluate physical symptoms and distress in patients and their careers. Participants’ symptoms were initially evaluated at enrolment and then assessed weekly basis, through questions from the validated Africa Palliative Care Association Palliative Outcome Scale.27
Key features of DHTs in palliative cancer care
The various functions of DHTs identified in this review are summarised in table 3, which provides a detailed overview of each technology and its functions to managing symptoms in palliative cancer care.
Benefits of DHTs for symptoms management
Pain management
The patients stressed the substantial value of the applications developed by Hochstenbach, Allsop and their team in assisting them with self-managing their pain and pain medication.11 25 26 Furthermore, Cornetta et al27 stated that a weekly monitoring programme makes it possible to adjust medication and facilitate refills.27
Promote interdisciplinary care coordination
Ho and colleagues23 mentioned that the mPCL seems to enhance interdisciplinary care coordination by allowing carers to interact with patients and their caregivers. It offers quick access to shared medical records and real-time responses at the point of care, ensuring timely symptom monitoring. It also records clinical interactions with patients after discharge and tracks longitudinal treatment decisions.23
Improving care and support
The mPCL and PainCheck enhanced the speed and efficiency of care while tackling financial, transportation and other patient-specific challenges that are often present in traditional care settings.23 Patients perceived these applications as a supportive resource. They no longer felt alone; instead, they felt engaged and integrated into the services. This led to a sense of reassurance, knowing that assistance was readily available when needed.25 26
Remote symptom control
Having a common platform (mPCL) ensures that patients with milder symptoms can be triaged and treated more effectively as situations arise. On the other hand, it facilitates assessing symptoms, maintaining contact and remotely communicating with patients after their discharge from the hospital, which represents a significant improvement compared with the previous lack or scarcity of symptom management resources in the community.23 In the same vein, PEACE has enabled the proactive and continuous monitoring of symptoms for hospice patients at home without increasing nurse visits, resulting in high overall satisfaction among patients, their families and staff.24 While, Cornetta et al27 have shown that telehospice can offer a temporary solution for PC to patients who lack access to PC services at home.27
Factors influencing adoption of DHTs in palliative cancer care
Familiarity with technology
Healthcare professionals’ knowledge, confidence, understanding and familiarity with information and communication technologies affected their own engagement, which subsequently influenced how much they encouraged and facilitated patient engagement.23 25 26 One barrier to understanding and becoming familiar with the system was the workload, as patients in the trial were distributed across different clinical nurse specialists. Consequently, these healthcare professionals had limited opportunities to use and familiarise themselves with the system.26 In this respect, Ingram et al24 have pointed out that to improve the use of new technologies, it is imperative to employ just-in-time training methods for staff.24
Availability of technological resources
Patients’ and healthcare providers’ access to e-Health technologies has also been influenced by limited access to technological resources such as phones, SIM cards, internet connection at home and not having a computer and handheld. Indeed, people who rarely used technology or computers, often lacked an internet connection or struggled with digital technology, found its use stressful and, as a result, were reluctant to incorporate it into their daily routine.23 25 Therefore, leveraging patient technology platforms including tablets, televisions and smartphones could simplify this process and enhance adherence.24
Ease of access and use
Participants in studies by Allsop et al10 (2019) and Hackett et al26 characterised the PainCheck system as straightforward, user-friendly, efficient and minimally intrusive.25 26 Similarly, Hochstenbach et al reported that patients appreciated the mobile application’s ease of use and its range of features.11 Additionally, Ho et al23 found that despite some reported challenges, most providers deemed mPCL ‘easy to use’ and expressed a commitment to continue using it if it remained available.23
Health professionals’ commitment
Patient engagement with PainCheck was further shaped by healthcare providers responsible for facilitating and monitoring patient interaction with the information and communication system.25 In fact, some patients mentioned that nurses did not introduce them to PainCheck to avoid adding an unnecessary burden.25 26 According to Hackett et al,26 effective implementation and improved engagement of professionals and patients necessitate proactive support and collaboration between the research team and healthcare workers managing information and communication systems.26 Moreover, the study by Hochstenbach et al (2023) emphasised that the follow-up and guidance provided by nurses, combined with their collaboration with attending physicians, were essential for improving patients’ experiences.11 Similarly, Ho et al23 reported that most clinicians demonstrated a keen enthusiasm in continuing to use mPCL and in sharing the application with their peers. They indicated that extending the application’s availability to patients across Tanzania could significantly enhance access to PC, especially in rural regions where services are scarce or non-existent.23
Perceived usefulness of DHTs
Although digital technology enables healthcare professionals to contact patients online, they appeared sceptical about its ability to deliver the same level of personalised care as their traditional methods, notably telephone and face-to-face consultations.26 Moreover, healthcare professionals voiced concerns about the scalability of their engagement with PainCheck, noting that using the system might add to their workload if they were managing a larger number of patients.26 Wilkie et al22 found that nurses who did not use the application mentioned that they had limited time to access the information, as they perceived it as optional since they were already familiar with their patients’ needs and preferences.22 Additionally, participants in a study by Hochstenbach et al expressed similar concerns about the effectiveness of digital tools compared with traditional care methods. Despite their enthusiasm for the application, nurses viewed their new approach to work as a genuine challenge. It introduced new tasks, different responsibilities and unfamiliar technologies, which required an adjustment period.11
Connectivity and software problems
Healthcare professionals have noted usability challenges such as the complexity of generating a clinical record for a newly registered patient and the requirement to promptly address real-time reminders or alerts for routine, non-urgent updates on a patient’s condition.23 Patients also encountered several primary technological issues, including not receiving a diary, inability to record medications, lack of an updated graph and difficulty accessing information.11 Furthermore, the application failed to document the initial pain assessment, which was essential for facilitating patient transfer and maintaining continuity of care.11
Discussion
This systematic review aimed to identify DHTs used for symptom management, especially pain, in PC for patients with cancer. It specifically focused on their effectiveness and the factors that influence their adoption by patients and healthcare professionals.
The literature review identified different types of DHTs used to manage bothersome symptoms, particularly pain, in palliative cancer care. The DHTs reported in the reviewed studies encompassed mobile/web health applications, digital platforms and telehospice. The mobile/web health applications consisted of PainCheck,25 26 mPCL,23 a mobile application connected to a web application,11 and PAINRelieveIt.22 PainCheck operated in the UK, mPCL was used in Tanzania, the mobile application connected to a web application was developed in the Netherlands and PainRelievIt was created in the USA.
The only digital platform identified was the PEACE24 and was used in USA, while telehealth27 was implemented in Kenya to evaluate physical symptoms and distress in patients and their careers.
The existing literature underscores the availability of a diverse array of DHTs for the effective management of symptoms in PC, with a particular emphasis on pain relief. For instance, Bhargava et al16 created RELIEF, a remote self-reporting application designed for community patients requiring PC. The pilot feasibility study showed that RELIEF is a practical and well-accepted tool for monitoring patients care patients remotely by enabling regular symptom self-reporting.16
The studies reviewed highlighted several key features of mobile/web health applications, including personalised pain management advice and real-time assessment of symptoms and quality of life.11 23 25 26 These applications facilitate the documentation of users’ clinical interactions with patients and caregivers post-discharge, and they provide short message service capabilities for direct contact between patients or caregivers and clinicians during emergencies.11 23 Additionally, they include a diary function that enables patients to monitor pain and side effects, allowing for regular reporting and sharing of pain data with health professionals.11 22 23 25 26 Educational sessions within the applications offer essential information on pain management, while a clinical decision support tool assists clinicians in prescribing analgesics effectively.11 22 23
Telehospice enables the remote assessment of physical symptoms and distress for both patients and caregivers through remote patient monitoring.27 The digital platform ‘PEACE’ offers several key features, including video consultations with a nurse at the hospice centre, which facilitate direct communication and support for patients and their families. Additionally, this platform provides telephone interactions, allowing for convenient and timely access to care and information, ensuring that patients receive the assistance they need in a flexible manner.24
The potential of DHTs for symptom management, particularly pain, in palliative patients with cancer was demonstrated in all reviewed studies.11 22–27 The benefits included pain management, promoting interdisciplinary care coordination, improving care and support and remote symptom control. A systematic integrative review revealed that e-Health improved individualised care for patients in PC, increased their sense of security, enhanced symptom management and boosted their participation in care.28 Zhou et al found that telephone follow-up is a practical alternative to hospital visits for patients with advanced cancer seeking symptom relief, significantly reducing the burden of travel.29 Additionally, the use of web-based platforms to gather patient-reported outcomes has been linked to enhancements in health-related quality of life and overall survival, facilitated by proactive management of emerging symptoms.30
The factors influencing the adoption of DHTs in palliative cancer care, identified in the articles selected for the systematic review, were familiarity with technology, availability of technological resources, ease of access and use, health professionals’ commitment, perceived usefulness of interventions and connectivity and software problems. A study carried out among digitally lagging nurses, aimed at identifying the factors influencing their adoption of health information technology, revealed that a negative attitude toward computer use and a lack of digital skills contributed to feelings of increased incompetence, leading to the postponement or avoidance of health information technologies both privately and professionally.31 Similarly, Wicki et al2 found that barriers to the acceptance of DHTs among PC patients included unfamiliarity, concerns about data security, errors in data interpretation and the loss of personal interaction due to artificial intelligence.2
Strengths and limitations
Our systematic review exhibited several strengths, including rigorous adherence to well-defined inclusion and exclusion criteria to minimise selection bias, and the use of multiple databases to ensure comprehensive coverage of relevant studies. To reduce interpretation bias, a four-member reading committee provided objective analysis and synthesis of the data. Additionally, independent and concurrent data extraction by team members, with discrepancies resolved through discussion, ensured high intercoder reliability.
This study has also several limitations to consider. The systematic review misses relevant studies in non-English languages or those in less common databases. Additionally, it excludes studies published before 2013, potentially omitting important research. Moreover, the review does not include grey literature, such as reports, theses and conference papers, which can provide valuable insights and data not available in peer-reviewed journals. This omission introduces bias, as grey literature often contains unique findings and alternative perspectives that might be crucial for a comprehensive understanding of the topic.
Recommendations
Encourage the systematic integration of proven digital technologies into symptom management protocols for patients with cancer in PC.
Provide ongoing training for healthcare professionals in the use of digital technologies for symptom management, focusing on adapting these technologies to their clinical practices and providing the necessary technical support.
Ensure equitable access to digital technologies for all PC patients, considering possible economic and technological barriers.
Promote ongoing evaluation of the effectiveness, safety, and acceptability of DHTs for symptom management, considering feedback from patients and healthcare professionals.
Implications of the results for practice, policy and future research
For practice:
Our study provides a comprehensive list of available digital health technologies, assisting healthcare professionals in selecting the most suitable tools for managing symptoms in palliative patients with cancer. By identifying the specific functions of each technology, caregivers can adopt a more personalised and effective approach to monitoring and treating symptoms.
For policy:
Our research results can help policymakers develop strategies and policies to enhance the adoption of digital health technologies in PC. By gaining a deeper understanding of the factors that hinder adoption, policymakers can design targeted interventions to address these challenges.
For research:
Our study identifies not only current technologies and their functions, but also the barriers to their adoption. This information is invaluable in guiding future research, highlighting areas requiring technological innovation or in-depth study.
Conclusion
In conclusion, this systematic review emphasises the important role of DHTs in improving symptom management in palliative cancer care. The results highlighted the various DHTs and their advantages while identifying key factors that limit or promote their adoption by patients and healthcare professionals. This research offers valuable insights about incorporating digital health solutions into PC practices, highlighting the need for targeted strategies to promote adoption and optimise the integration of these technologies for better patient outcomes. By addressing both the potential benefits and the barriers to implementation, this study lays the groundwork for future initiatives aimed at enhancing the quality and accessibility of PC through innovative digital tools.
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
Ethics statements
Patient consent for publication
Ethics approval
Not applicable.
Footnotes
Contributors Designing the systematic review protocol and developing the search strategy: MH and KJ. Conducting the literature search, screening and data extraction: All authors. Performing the quality assessment of included studies: All authors. Contributing to the synthesis of results: All authors. Providing critical revisions and overseeing the writing and finalisation of the manuscript: All authors. MH is responsible for the overall content of the manuscript and acts as the guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.