Feasibility, acceptability and needs in telemedicine for palliative care

DOI: https://doi.org/10.4414/SMW.2022.w30148

Introduction

Telemedicine is a growing field. According to the definition of the World Health Organization (WHO), telemedicine encompasses virtual communication and remote monitoring tools in the large field of digital health intervention [1]. Historically, virtual communication was only rarely used by healthcare professionals [2]. Today, this communication modality is widely accepted by patients and caregivers, and is gaining acceptance from professionals [3]. The two main drivers of this development have been first, general technological advances in digitalisation [4] and second, the acceleration in use due to the COVID-19 pandemic [5, 6].

In general medicine, these interventions are commonly used in medical specialities such as psychiatry, dermatology, neurology, radiology and rehabilitation [7]. There are some proven benefits of telemedicine in general practice, but these cannot be generalised well due to the heterogeneity of the tools and populations [8].

In palliative care, recent reviews of the subject show good feasibility and some evidence of the effectiveness of telemedicine [3, 9, 10]. The review of Gordon et al. showed that a clear majority of patients were satisfied with these tools and view them as potentially equal to fact-to-face contact [10]. The meta-review of Finuance mainly explored aspects of the effectiveness of a variety of telemedicine technologies, ranging from social media to video-conferencing. The main focus of the studies was video-conferencing, and the positive effects described related primarily to psychological symptoms, communication, information sharing and use of resources [3].

Most of the studies focused on feasibility and acceptability and did not evaluate the formal needs of patients and healthcare providers before design of the intervention, probably because there was an immediate necessity for the implementation of the tools (i.e., distance/COVID).

If there is no existing telemedicine policy or overall concept, many digital tools are used for the convenience of patients or providers, but the actual needs of patients/caregivers remain unknown.

Countries with easy access to health care, such as Switzerland, have been less pressured by necessity to use telemedicine. This situation allows to carefully prepare and tailor digital health interventions from the outset, beginning with an assessment of the feasibility and of the patients/caregivers and health care provider’s needs.

The development of a complex intervention such as telemedicine should be based on a thorough understanding and the experience of existing practice models. The results of this review can be the basis for planning and tailoring a specific telemedicine intervention for palliative care patients, caregivers and professionals. According to the MORE Care Guidelines [11], we regard this review as the preliminary step in the evaluation for such an intervention in a practice environment where it has not yet been implemented.

Therefore, the objective of this review was to evaluate the existing literature on the feasibility and acceptability of a telemedicine intervention in palliative care with a focus on the needs of patients/caregivers and healthcare professionals in both in- or outpatient palliative care by addressing the following question:

What are the known needs, elements of feasibility,and reasons for acceptance of a telehealth intervention in palliative care?

Methods

This review follows the recommendation of Munn et al. [12], the PRISMA 2020 Statement [13] and PRISMA-ScR [14] guideline/checklist (appendix 1) and was registered as a project on the OSF registry (10.17605/OSF.IO/KJ346).

Eligibility criteria

All reports that involved adult (>18 years) palliative care patients, caregivers and healthcare professionals in an in- or outpatient palliative care service were included. Supportive care and general medicine patients without the designation of palliative were not included. No language or study design restrictions were applied. Telemedicine interventions of interest were virtual visits, virtual peer-to-peer communication and remote monitoring (2.4.1–2.4.4 of the WHO telemedicine classification) [1]. All other interventions, especially telephone-based or asynchronous digital communication modalities, were not eligible. To be included, the reports/studies had to present a measurement of “feasibility”, “acceptability” or “needs” as an outcome. Studies with only indirect markers, for example, simple satisfaction surveys or using consistent adherence as a surrogate marker for feasibility and acceptability, were excluded.

Databases and search strategy

The PubMed, Ovid SP, Medline, Cochrane and Scopus databases where searched on 29 April 2021 for reports matching the terms of the inclusion criteria. Prospero, Clinicaltrials.gov, and OFS were searched for studies/reviews on telemedicine in palliative care. The PubMed database was searched with the following main search terms using the advanced search function: ((Telemedicine) OR (Telehealth) OR (Digital health interventions)) AND (Palliative Care)) AND ((Feasibility) OR (Acceptability) OR (needs)). Dates were restricted to 2010 or later. The Ovid SPN and Scopus databases were searched with the same search strategy. Registries were searched more broadly, with the terms “Telemedicine and Palliative Care.” The Cochrane library was searched with the use of the terms “Digital” and “Telemedicine.”

Details of the search strategy can be found in appendix 2.

Study selection

Studies were selected in two steps by a single researcher (AE). A second researcher (SE) resolved uncertainties through discussions with the first when necessary. The titles and abstracts of all reports from the literature search were screened for eligibility using the following inclusion criteria: (1) population (adult in/outpatient palliative care patient/caregivers and professionals) and (2) intervention (telemedicine as defined by the WHO).

This was followed by a full-text analysis of the eligible reports. All inclusion criteria were sequentially applied in this second step : first, by assuring the full text still matched the right population and intervention; second, by assessing them for one of the predefined outcomes (“feasibility”, “acceptability”, “needs”).

Data extraction

Charting was done by a single researcher (AE), using the spreadsheet function of Excel, according to PRISMA [15]. A second researcher (AC) double-checked the methodological characteristics of the charted studies. We collected data on each report (author, year, study design), such as the population (origin, age, setting and sample size), the intervention (technology, main purpose, follow-up time), and, finally, the outcomes and key findings (feasibility, acceptability and needs). For records from registries, we collected information about the author, project start, expected finishing year, study design, population (origin, type and sample size), the intervention (technology), and outcomes (feasibility, acceptability and needs). No protocol deviation was noted.

Results

We found 643 records and 61 registry entries. After removal of duplicates, a total of 520 records (459 reports, 61 registry entries) were screened for eligibility. Of these, 411 (388 report, 44 registry entries; 79%) were excluded, mainly because they did not correspond to the required population or were not related to telemedicine. After excluding one conference paper, 67 further records were excluded (54 studies, 13 registry entries) mainly because they did not match the predefined intervention or outcome (feasibility, acceptability and needs) criteria. Of the 98 (19% of initial yield) remaining full-text reviewed records, 27 reports and 4 registry entries were selected for the analysis. Details are described in a PRISMA 2020 flow diagram [16] (fig. 1)

Figure 1 PRISMA flow diagram, adapted from http://www.prisma-statement.org.

In the 27 reports, the 3 most common designs were single-arm intervention studies (9; 33%) [17–25], reviews (6; 22.2%) [3, 26–30], and qualitative studies (4; 14.8%) [31–34]. The remainder were cohort, cross-sectional studies or reports / expert opinions [35–41], with only one randomised controlled study [42]. The quality of the original studies was categorised according to the PDQ^® level of evidence, a four-level grading scale developed by the National Cancer Institute specifically for studies in the field of supportive and palliative care [43]. There was only one level I original study [20], whereas 15 were level II, 5 were level III and the rest were level IV. Only four registry entries of ongoing studies were included, three reviews [44–46] and one pilot study [47]. All four should be completed by 2022.

A summary of the characteristics of the selected studies was created as a simplified table containing the following items: author, year, study design, population, intervention, and outcome (as a dichotomised value: present / not present) (tables 1 and 2). A comprehensive overview of the different users, independence of use and main elements of the three outcomes (feasibility, acceptability, and needs) can be found in appendix 3.

Virtual visits, defined as digital video consultations between patient and healthcare provider were the most frequently used (70.4%) form of telemedicine [17, 19–21, 23, 25–28, 30, 31, 33–39, 42]. The outpatient setting was mostly studied, with only two interventional trials [19, 20] focusing on the inpatient setting. Geographically, most studies were conducted in countries with large geographic distances (appendix 4). The clients were primarily patients and/or caregivers (70%) [17–25, 27–30, 33, 34, 36, 37, 39, 41, 42]. The most common providers were physicians alone (33%) [17–20, 27, 33, 34, 37, 39] and the core palliative care team (physician and nurse) (40%) [21, 23–25, 28–31, 36, 38, 42]. Four reports (15%) [3, 26, 35, 40] described multiple/mixed providers, and only one study (4%) [22] involved nursing providers exclusively.

Independence of use, meaning that the tools were used independently by the patient or caregiver, was reported in eight studies [17, 18, 22, 24, 36, 40–42].

Feasibility

Feasibility was a specific outcome in 23 (85%) of the 27 studies included [3, 17–31, 33–37, 39, 41] and was mainly (82%) assessed with purpose-designed questionnaires or questions. Most studies define “feasibility” as the technical efficacy of the digital connection and the telemedicine intervention. Only one study [21] used a validated tool, the Telehealth Usability Questionnaire [48]. Technical feasibility rated by the patient and healthcare professional was found to be good in 74% of the assessed interventions [3, 17, 18, 20, 21, 23–31, 33–37, 39]; most patients described a good user experience. The reliability of the connection, security and usability were the main elements of concern for the patient and healthcare professional [33, 41]. As an example, the study by Read et al. [33], which analysed client to provider telemedicine in a rural setting, proved that effective communication was possible with only a few technical issues.

Acceptability

Acceptability was described as a specific outcome in 24 (89%) of the 27 studies analysed [3, 17–31, 33–35, 37, 39–42]. The assessment tools were more heterogeneous than those used for feasibility; four were validated questionnaires [19, 21, 22, 42], and the rest were interviews [18, 25, 32–34, 40] and purpose-built questionnaires. The definition of acceptability was more variable, mostly referring to three themes: general satisfaction, positive acceptance as a communication tool and not inferior to physical visits.

General satisfaction ranged from 84.1–100% in the original studies that specifically analysed this item [21, 29, 39], and this was confirmed by two reviews [29, 30].

Generally, patients, caregivers, and healthcare professionals alike accepted these tools as a valid way of communication [27]. The acceptance of it as a communication tool is confirmed on different levels; patients experienced a feeling of connectedness [37]. The addition of a visual component enhanced the experience of the patient [25] and the discussion of concerns is possible [33]. In the context of a family meeting, understanding was good and the virtual visit helped to increase trust in the treatment in a positive way; interestingly, the sharing of wishes and hopes was only possible for 50% of the participants [20].

There is substantial evidence that virtual visits can be seen as equal to physical visits in an appropriate setting [24, 29, 35, 37, 39]. Three sources even mentioned that some patients preferred (42–77%) telemedicine over physical visits in a variety of different settings [24, 37, 39].

Needs

Only seven studies (26%) with different methodologies (two cross-sectional surveys, one single-arm intervention study, two qualitative studies and two expert opinions) assessed the needs of patients, caregivers and healthcare professionals regarding telemedicine tools [19, 32, 34, 35, 38, 40, 41]. Even fewer (four, 15%) assessed the needs in the context of a digital health intervention directly [19, 32, 40, 41], and all of these used qualitative methods. The definition of “needs” is broad and heterogeneous, and generally refers to the preference of the client. Direct evidence of need was any qualitative statement from a stakeholder (patient, caregiver or healthcare professional) that expressed a wish or a need for a specific function in the tool; indirect evidence was statements regarding preferences for or essential elements of a telemedicine tool. Most stakeholders were able to identify at least one or several potential or actual needs for digital tools in palliative care. In addition, being able to access a service at home without the need for travel seemed to be included in the indirectly mentioned needs [34].

Independent of the role of the stakeholder (patient, caregiver, healthcare professional or policy-maker), the three most commonly mentioned needs were: improvement of communication, coordination of care and technical usability.

First, under improvement of communication, visual contact, increased accessibility (including after-hours) and better follow-up seemed to be the most important needs in this theme [32, 40, 41].

Second, under coordination of care, several studies described needs related to coordination, for example, scheduling, central triage, collaboration between different health services and resources planning [32, 40, 41]. This need is equally important to the patient and the family caregiver, and focuses on improving care at home. For the healthcare professional and policy maker, an additional focus is to improve the performance of the service by analysing trends and resource needs and being able to access recent data [40].

Third, under technical usability, one need that was stated either directly or indirectly is the technical reliability and security of the tools. These tools should provide a stable connection, be simple to use and ensure privacy. It should be accessible to a broad population and there should be support from digital natives in the use of it. Finally, and importantly, the tools should be affordable [19, 40].

In addition, another indirectly mentioned need is the availability of a service at home without the need for travel [34].

A critical view from one study was that participants who stated few needs regarding digital communication tools (continuity of care, visual identification of the person as a healthcare professional and presence of family) focused more on potential discomfort with digital tools and cultural incomprehension [19].

Discussion

In essence this review showed that telemedicine seems to be a feasible digital health intervention in palliative care and that patients, caregivers and health professionals are accepting it. The question of which needs should be considered could be answered only partially because few studies addressed the key needs of telemedicine in this population.

Feasibility and acceptability

In line with the most recent meta-reviews [3], this review confirmed the feasibility of telemedicine as a communication tool in palliative care. In addition to ease of use and stability of the internet connection, adequate training of healthcare professionals is important. The question of whether these tools can be reliably used without the help of a third party remains. The patient or caregiver was aided by the healthcare person with the set-up of the tool in more than half of the home deployments.

There seemed to be a high rate of acceptability. Especially related to communication, the patients were confident that these interventions do not significantly affect their experience of quality of communication compared with a face-to-face consultation [35]. A greater proportion of patients even perceived the virtual visit to be comparable to physical visits, referring to the visual connection [27, 29]. Therefore, we suggest that the visual component of the communication is of great importance, and one can argue that the advantages will outweigh the inconvenience (lack of physical connection) or the fear of information breaches. There was a difference between the acceptability among the patients/caregiver (clients) and the healthcare professionals), with the latter being somewhat more critical of the new tools [37].

Acceptability seemed to be influenced by barriers and facilitators for both the patients/caregivers and the healthcare professionals. The recent systematic review by Disalvo et al. [49] provided an overview of these. Their findings confirmed the results of this review through emphasising the importance of an efficient infrastructure (system level), positive attitude and adequate training (clinician level and patient level). The main differences compared with our study were (a) the large array of technologies, including e-mail, telephone and SMS text messaging, (b) the inclusion of all ages, (c) the focus on barriers and facilitators and not, like our study, on needs.

Needs

A direct needs assessment did not seem to be a priority  in the studies that evaluate telemedicine in palliative care. This is remarkable, especially since it is generally acknowledged that a needs assessment is necessary before the implementation of any digital health intervention [50, 51]. The reason for this might be linked to the fact that most of these tools were born out of necessity (distance, pandemic) and that the barrier to access was considered a generally accepted need that overrules other individual needs of patients, caregivers, and healthcare professionals. Nonetheless, the studies that addressed needs directly or indirectly as an outcome show three important factors, namely communication, coordination and technical aspects (usability).

Almost all digital health interventions have a dominant communication element and good communication is the major element in palliative care [3, 40]. This review showed that most needs seem to relate to the quality of the interaction (visual, follow-up possibility) and the accessibility.

Coordination is a major challenge in palliative care as many members of the interdisciplinary team interact with the so-called “unit of care”, the patient and the caregiver. Therefore, it is not surprising that multiple needs were described, ranging from simple scheduling to coordination of care at home. Both patients/caregivers and healthcare professionals attached equal importance to coordination [40].

Technical reliability is important for the “perceived ease of use” and “behavioural intention to use” aspect of the acceptance of the technology (TAM-Model) [52]. Low quality connections and unreliable digital tools are a source of frustration; therefore, addressing these issues is important. As mentioned before, in the majority of cases, a third person assisted with the set-up of the tool, which strongly indicates that patients do not use the tool autonomously, or at least not during the first virtual visit.

Being able to access a service from home was a factor towards acceptability [49], but it was rarely evaluated as a need. If asked, patients agreed that there is a need for digital health interventions to facilitate their lives at home [34], for example, by having follow-up visits without the necessity to travel [40]. This corresponds to the general preference for home care in palliative care, even in end-of-life situations [53].

Notably, only a few studies reflected a critical view of the tools [19]. Our hypothesis is that, as most of the studies focused on quality control, there might be a selection bias in the population because of the inclusion of participants less critical of technology, and a possible publication bias. Another reason could be that the convenience (ease of access, less travel) largely outweighed any negative points, thereby reducing any criticism.

Impact on the planning of the implementation of such a tool

Implementing telemedicine in a medical system that has good availability of care and openness to digitalisation is only low to moderate [54] is a challenge. This holds true for the healthcare system in Switzerland, where digital tools were viewed critically by healthcare professionals and patients alike before the pandemic [55–57]. In contrast to other countries, this critical view seems to have been only slowly changing since the onset of the COVID-19 pandemic [54].

Feasibility seems largely proven, and the components to ensure acceptability are known and likely to be universal [49]. Therefore, we propose that the potential of telemedicine to improve palliative care in Switzerland should be evaluated, in regard to the need, feasibility and acceptability of such a service. Should there be a clear need for it, a secure and easy-to-use telemedicine intervention in palliative care should be evaluated for its efficacy.

Limitations

This review has several limitations. First, the scientific evidence was mainly based on low to moderate quality studies. Most studies were single-arm quality-control/implementation studies, and comparison groups were lacking; therefore, their results should be viewed with caution. The reason is probably that most studies evaluated existing tools, which were born out of necessity (distance or epidemic (COVID-19)) and, thus, they should be interpreted in that specific context.

This leads us to the second limitation, namely, generalisability. As most studies were conducted in countries with significant distances or low-density medical environments, it is difficult to generalise to settings with a highly developed medical service density, such as central Europe.

Third, the method used in this review could cause a selection and detection bias because only a single author selected and charted the information. Additionally, the search strategy was not as large as in other reviews. The results of other reviews addressing the most commonly assessed outcomes (feasibility and acceptability only) are similar to our review, therefore we believe that the relevant literature was identified by our work.

Conclusion

The growing field of telemedicine has arrived in a relationship-based speciality such as palliative care. The necessity created by long distances and restricted access due to the pandemic are two of the major drivers of this development. Telemedicine is feasible and accepted as a means of communication in such settings, but a direct need assessment before a new deployment of such a tool was only rarely done.

Many countries with dense, highly accessible medical systems, similar to the situation in Switzerland, have begun to adopt these tools. They do not have the same elements of necessity, such as in large countries. Therefore, a comprehensive, adaptive needs assessment should be done, involving both the users and providers in these countries, before or during the implementation of a new tool, especially in palliative care.

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Appendices

Appendix 1: PRISMA-ScR checkist

Appendix 2: Details of search strategy

Search strategy – Academic publications

Key concepts:

(Telemedicine OR Telehealth OR Digital health interventions) AND (Palliative Care) AND (Feasibility OR Acceptability OR needs)

Filters: Date: from 2010/1/1 – 2021/4/28

Pubmed-Medline:

(("telemedicine"[MeSH Terms] OR "telemedicine"[All Fields] OR "telemedicine s"[All Fields] OR ("telehealth s"[All Fields] OR "telemedicine"[MeSH Terms] OR "telemedicine"[All Fields] OR "telehealth"[All Fields]) OR (("lancet digit health"[Journal] OR "digit health"[Journal] OR ("digital"[All Fields] AND "health"[All Fields]) OR "digital health"[All Fields]) AND ("intervention s"[All Fields] OR "interventions"[All Fields] OR "interventive"[All Fields] OR "methods"[MeSH Terms] OR "methods"[All Fields] OR "intervention"[All Fields] OR "interventional"[All Fields]))) AND ("palliative care"[MeSH Terms] OR ("palliative"[All Fields] AND "care"[All Fields]) OR "palliative care"[All Fields]) AND ("feasibilities"[All Fields] OR "feasibility"[All Fields] OR "feasible"[All Fields] OR "feasiblity"[All Fields] OR ("accept"[All Fields] OR "acceptabilities"[All Fields] OR "acceptability"[All Fields] OR "acceptable"[All Fields] OR "acceptably"[All Fields] OR "acceptance"[All Fields] OR "acceptances"[All Fields] OR "acceptation"[All Fields] OR "accepted"[All Fields] OR "accepter"[All Fields] OR "accepters"[All Fields] OR "accepting"[All Fields] OR "accepts"[All Fields]) OR ("health services needs and demand"[MeSH Terms] OR ("health"[All Fields] AND "services"[All Fields] AND "needs"[All Fields] AND "demand"[All Fields]) OR "health services needs and demand"[All Fields] OR "needed"[All Fields] OR "needs"[All Fields] OR "needing"[All Fields]))) AND (2010/1/1:2021/4/28[pdat])

Search terms (free text and controlled vocabulary):

Telemedicine: "telemedicine"[MeSH Terms] OR "telemedicine"[All Fields] OR "telemedicine's"[All Fields]

Telehealth: "telehealth's"[All Fields] OR "telemedicine"[MeSH Terms] OR "telemedicine"[All Fields] OR "telehealth"[All Fields]

Digital health: "Lancet Digit Health"[Journal:__jid101751302] OR "Digit Health"[Journal:__jid101690863] OR ("digital"[All Fields] AND "health"[All Fields]) OR "digital health"[All Fields]

interventions: "intervention's"[All Fields] OR "interventions"[All Fields] OR "interventive"[All Fields] OR "methods"[MeSH Terms] OR "methods"[All Fields] OR "intervention"[All Fields] OR "interventional"[All Fields]

Palliative Care: "palliative care"[MeSH Terms] OR ("palliative"[All Fields] AND "care"[All Fields]) OR "palliative care"[All Fields]

Feasibility: "feasibilities"[All Fields] OR "feasibility"[All Fields] OR "feasible"[All Fields] OR "feasiblity"[All Fields]

Acceptability: "accept"[All Fields] OR "acceptabilities"[All Fields] OR "acceptability"[All Fields] OR "acceptable"[All Fields] OR "acceptably"[All Fields] OR "acceptance"[All Fields] OR "acceptances"[All Fields] OR "acceptation"[All Fields] OR "accepted"[All Fields] OR "accepter"[All Fields] OR "accepters"[All Fields] OR "accepting"[All Fields] OR "accepts"[All Fields]

needs: "health services needs and demand"[MeSH Terms] OR ("health"[All Fields] AND "services"[All Fields] AND "needs"[All Fields] AND "demand"[All Fields]) OR "health services needs and demand"[All Fields] OR "needed"[All Fields] OR "needs"[All Fields] OR "needing"[All Fields]

Scopus

( TITLE-ABS-KEY ( telemedicine ) OR TITLE-ABS-KEY ( telehealth ) OR TITLE-ABS-KEY ( digital AND health AND interventions) AND TITLE-ABS-KEY ( palliative AND care ) AND TITLE-ABS-KEY ( feasibility ) OR TITLE-ABS-KEY ( acceptability ) OR TITLE-ABS-KEY ( needs ) ) AND ( LIMIT-TO ( PUBYEAR , 2021 ) OR LIMIT-TO ( PUBYEAR , 2020 ) OR LIMIT-TO ( PUBYEAR , 2019 ) OR LIMIT-TO ( PUBYEAR , 2018 ) OR LIMIT-TO ( PUBYEAR , 2017 ) OR LIMIT-TO ( PUBYEAR , 2016 ) OR LIMIT-TO ( PUBYEAR , 2015 ) OR LIMIT-TO ( PUBYEAR , 2014 ) OR LIMIT-TO ( PUBYEAR , 2013 ) OR LIMIT-TO ( PUBYEAR , 2012 ) OR LIMIT-TO ( PUBYEAR , 2011 ) OR LIMIT-TO ( PUBYEAR , 2010 ) )

Ovid

https://ovidsp.ovid.com/ovidweb.cgi?T=JS&NEWS=N&PAGE=main&SHAREDSEARCHID=1a2fppTzuUTStqdpYi3i7CcmWMLDgDCcyajqK2bgQwnARsACw4iaO7igHH9frJg1M

Search strategy - Registries

Prospero:

(Telemedicine OR Digital Health intervention OR Telehealth) AND Palliative Care

Clinical Trial.gov:

Telemedicine AND Palliative Care

Cochrane:

Digital OR Telemedicine

Appendix 3: Chart summary of users 

Appendix 4: Scopus™ territory analysis

Figure S1 Scopus™ territory analysis (28 April 2021). Documents by country or territory. Compare the document counts for up to 15 countries/territories.