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Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.
The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.
A scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.
The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.
The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.
The preferred place of care for most patients in need of palliative care is their own home, and many of them are able to spend time at home and receive the needed care [
Telehealth is increasingly being used in home care [
Telehealth may be useful for conditions that require close monitoring, clinical assessment, and early intervention to prevent adverse events, such as unwanted emergency hospitalization [
Several systematic reviews have examined home-based telehealth in palliative care settings. One systematic review examined the evidence for home-based telehealth in pediatric care by including studies identified in two databases, focusing on children, adults, and health care professionals [
Other literature reviews have been limited to geographical areas and have explored the use of telehealth in palliative care in the United Kingdom [
Telehealth is increasingly being used in patients’ homes [
This scoping review used the framework of Arksey and O’Malley [
A systematic broad search was performed in October 2018 using the databases Medical Literature Analysis and Retrieval System Online (MEDLINE), PsycINFO, EMBASE, and Cumulative Index to Nursing and Allied Health (CINAHL) for studies published between January 1, 2000, and October 16, 2018. The search strategy was built in MEDLINE by 4 of the authors (SS, AAGN, AW, and AK) and a librarian using Medical Subjects Headings and text words. The search was adopted for each subsequent database. The search strategy is described in
On the basis of the inclusion and exclusion criteria (see
Inclusion and exclusion criteria.
Criterion | Inclusion | Exclusion |
Types of studies | Qualitative, quantitative, and mixed method studies on the phenomenon published in peer-reviewed journals | Letters, comments, conference abstracts, editorials, doctoral thesis, or any type of review |
Period | January 1, 2000, until October 16, 2018 | Before January 1, 2000, and after October 16, 2018 |
Language | English, Portuguese, Spanish, or Scandinavian | All other languages |
Type of participants | Patients in a palliative care trajectory regardless of diagnosis, aged 18 years or older, and living at home | Patients who are not in a palliative care trajectory; patients aged 17 years or younger; and patients who use telehealth in a hospital, nursing home, or hospice setting |
Phenomenon of interest | Patients’ experiences of using telehealth at home with follow-up from health care professionals | Patients’ experiences of using telehealth at home without follow-up from health care professionals or experiences of using telehealth in a hospital, nursing home, or hospice setting |
Type of outcomes | Patients reported subjective and objective outcomes | Proxy-reported (next of kin or health care professional) outcomes |
Pairs of authors extracted data from the included publications, using a standardized data-charting form and maintaining the wording and terminology from the papers. The form included the following information: authors, year of publication, country of origin, aim, population and sample size, telehealth application, delivered mode, design and method, and results (see
An inductive approach was used to thematically organize and summarize the results from the included papers to answer the research question [
Articles included in thematic groupings.
Theme | Study | Number of articles |
Easy and effortless use regardless of the current health condition | Aoki et al [ |
15 |
Visual features enhance communication and care via telehealth | Hebert et al [ |
10 |
Symptom management and self-management promotion by telehealth | Bonsignore et al [ |
14 |
Perceptions of improved palliative care at home | Aoki et al [ |
14 |
The database and hand searches yielded 3471 publications. After 937 duplicates were removed, titles and abstracts for 2532 publications were screened. On the basis of the inclusion and exclusion criteria, full text of 100 publications were read; 78 publications were excluded and 22 publications from 19 studies were included in the review (see
Summary of the selection of studies.
A total of 22 papers from 19 studies were included. The included studies were conducted in Australia (n=1), Brazil (n=1), Canada (n=2), Japan (n=1), the Netherlands (n=4), Portugal (n=1), Sweden (n=1), United Kingdom (n=3), and United States (n=5). The sample size of the included studies ranged from 2 to 187 participants, and in 6 papers, the samples consisted of 11 participants or fewer. Papers included patients with cancer (n=13); chronic obstructive pulmonary disease (COPD; n=1); cystic fibrosis (n=1); and a mix of different life-limiting illnesses such as cancer, COPD, multiple sclerosis, and amyotrophic lateral sclerosis (n=4). Three papers did not report diagnoses. Six papers included patients aged 85 years and above (oldest-old patients). Nine papers used mixed method or multimethod design, combining qualitative and quantitative methods [
In 15 papers, telehealth was delivered using an interactive mode, whereas the passive mode was used in 7 papers (see
Video-based technology (n=14) was the most frequently used telehealth application in palliative home care. In 10 papers, teleconsultation with patients, relatives, and health care professionals was used to discuss patients’ needs, concerns, symptoms, and other problems and to give patients advice [
Mobile devices such as mobile phones [
Two studies described a theoretical framework for telehealth intervention: self-monitoring [
To answer the research question regarding what is known about patients’ experiences of the use of telehealth in palliative home care, the results of this scoping review are presented in four thematic groupings: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home (see
Fifteen papers reported patients’ experiences of using the telehealth apps. In 10 papers, patients were able to use telehealth despite declining or poor health conditions. The apps were perceived as simple, clear, easy, effortless, and not too time consuming to use. Patients felt comfortable using the technology [
In four papers, patients were unable to use the apps because of their poor health condition, physical limitations, or unfamiliarity with the telehealth equipment, and they required assistance from their family [
Patients experienced that telehealth including video was useful for communication and interaction with health care professionals [
In 1 study in which patients were coached on end-of-life communication using webinars, patients reported that this format lacked interpersonal dynamics such as social presence as well as aural and visual communication cues that were considered important because of the sensitive nature of the topic. Nevertheless, patients stated that having the live video of the discussion facilitator and the ability to see other participants could have made it easier to follow the discussions [
There were equivocal results of whether the use of telehealth improved burdensome symptoms and quality of life. A study testing the feasibility of SMS and interactive voice response found a significant reduction in mean pain score using the European Organization for Research and Treatment of Cancer Quality Questionnaire, but the study found no change while using the Numeric Rating Scale for pain. Furthermore, there was no change in overall quality of life [
Patients perceived that use of telehealth improved quality of care, enhanced self-management of pain, and contributed to more sincere pain reporting [
Patients felt that the use of telehealth increased and improved their access to health care professionals at home [
It was important for the patients to know that health care professionals were available for them, were looking after them, and were monitoring them by means of telehealth. This contributed to feelings of being cared for at home, connectedness, relief, tranquility, and enhanced security [
This scoping review mapped and assessed published studies on patients’ experiences of using telehealth in palliative home care. The results showed that telehealth apps seemed to be feasible for use in palliative care, increased and improved access to health care professionals at home, and enhanced feelings of security and safety. The visual features of telehealth allowed a close connectedness with health care professionals, although there were contradicting results on whether the use of telehealth improved burdensome symptoms and quality of life.
Telehealth apps seem to be feasible for use in palliative care and do not seem to add further burden to most patients. The prerequisites for patients’ willingness to use telehealth seem to be app simplicity and telehealth services being perceived as valuable to the patients [
The results indicate that the use of telehealth improved access to health care professionals, although patients remained at their own homes. The use of telehealth seems to support the patient’s choice of living at home for as long as possible, which is important for many patients [
The use of telehealth apps may strengthen the relationship between patients and health care professionals [
The finding that the use of video-based technology enhances communication and care is supported by previous reviews [
Contradicting results were found on whether the use of telehealth improved burdensome symptoms and quality of life. Two one-group pre-post studies reported some improvements, whereas two of the RCTs found no significant differences between the groups. This is in line with a previous systematic review [
A theoretical framework for understanding the mechanism of an intervention is recommended when conducting palliative care research on complex interventions [
Patients’ experiences of using telehealth in palliative home care have mostly been studied in populations comprising patients with cancer. Although the origins and the development of palliative care are closely linked to oncology, early integration of palliative care is increasingly emphasized [
Notably, few studies included the oldest-old patients, although this population increases continuously and also lives longer with life-limiting illness because of improvement in treatments [
This scoping review indicates that patients’ experiences of telehealth in palliative home care has mostly been studied in populations comprising patients with cancer, and few papers included the oldest-old patients. Mixed method is most frequently used for study design, whereas a limited number of papers used an RCT design. Furthermore, none of the papers that investigated whether the use of telehealth improved symptoms or quality of life applied a theoretical framework for their intervention.
A strength of this review was that we used an acknowledged framework for conducting scoping reviews, in addition to the PRISMA-ScR for guiding the reporting of the review. We performed a broad comprehensive and systematic search to identify published studies. Furthermore, the study selection process and data extraction were conducted independently by pairs of authors.
Considering the limitations of this review, different terms and synonyms are used for telehealth and palliative care in the literature [
The use of telehealth in palliative home care does not seem to add further burden to most patients. Telehealth increased and improved access to health care professionals at home, and it enhanced the feelings of security and safety. Furthermore, the visual features of telehealth allowed a close connectedness with health care professionals, which seemed to be highly valued. There were contradicting results on whether the use of telehealth improved burdensome symptoms and quality of life. The results further suggest that telehealth apps may be a positive addition to palliative home care, and patients’ reports thereof are in favor. However, health care professionals need to individually tailor the telehealth app to enhance usability and user friendliness for patients. Technology including video was preferable to patients.
To make solid inferences and suggest recommendations for practice and policy, more systematic reviews and studies highlighting the negative aspects of telehealth should be conducted. Future studies also need to address the experiences of using telehealth among patients with life-limiting illnesses other than cancer and the oldest-old patients. It is important to investigate whether other populations have different experiences of usability or other concerns regarding telehealth, as compared with patients with cancer and younger patients. Furthermore, studies including RCTs, when appropriate, are required to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life. The involvement of users in the development of apps and studies is imperative. Using theoretical frameworks to better understand the mechanisms of interventions is important for future knowledge translation and application.
Search strategy used in Medical Literature Analysis and Retrieval System Online.
Characteristics of the included studies.
Cumulative Index to Nursing and Allied Health
chronic obstructive pulmonary disease
Medical Literature Analysis and Retrieval System Online
Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews
randomized controlled trial
The authors would like to acknowledge Kari Larsen Mariussen for helping us to build the search strategy.
None declared.