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A systematic review was conducted to explore published quantitative and qualitative research describing patient-reported outcomes of palliative telehealth intervention studies. Multiple databases were searched for articles published between January 2006 and May 2016, which met study criteria. Methodological quality was assessed using Cochrane Colla...
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Our ability to evaluate outcomes which genuinely reflect patients’ unmet needs, hopes and concerns is of pivotal importance. However, much current clinical research and practice falls short of this objective by selecting outcome measures which do not capture patient value to the fullest. In this Opinion, we discuss Patient-Centered Outcomes Measure...
Citations
... The use of telehealth videoconferencing for synchronous visits in palliative care (telePC) drastically increased during the COVID-19 pandemic [11][12][13][14] and represents a practice shifting mode of care delivery [15][16][17][18][19][20][21][22][23], with the potential to overcome geographic barriers to specialty care services, like palliative care (PC), and improve the quality of health care for rural residents [24][25][26][27][28]. Yet, this medium presents clinicians, patients, and families with a new sensory and relational environment within which to engage in serious illness conversations. Although communication guides have arisen to assist PC clinicians with navigating these new telehealth environments [29][30][31][32][33][34], very little empirical evidence is available that describes how clinicians, patients, and families establish deep human connection when communicating through a screen. ...
... TelePC also offers a potential mechanism to overcome disparities in access to specialty palliative care by bringing care to people living in areas with limited in-person options [14]. The use of telePC rapidly increased during the coronavirus pandemic [15] and many have called for its sustained use [16] due to emerging evidence that it can improve QoL and symptom management for patients [17,18]. ...
Background
While telehealth may offer promise for accessible, efficient palliative care delivery, leveraging telehealth technologies as an opportunity to better understand and advance the science of palliative care communication has been less well explored. Without identifying solutions to overcome challenges to conducting research in the virtual environment, we are unable to conduct the foundational work to offer evidence-based recommendations for high-quality telehealth, particularly in the context of palliative care. Our objective is to highlight methodological challenges in the use of telehealth for the study of palliative care communication and share lessons learned from using these methods.
Methods
This paper is the result of a reflective process and experience across three ongoing observational communication research studies focused on the use of telehealth during serious illness. These research datasets have been collected from multiple sites and represent rural and urban telehealth palliative care consultations for patients receiving dialysis (n = 34), patients with cancer (n = 13), and seriously ill, home-bound patients (n = 9). We illustrate challenges, insights, and recommendations with case studies from these studies.
Results
We identify key challenges, and offer recommendations to address them, in telehealth palliative care communication research. Key insights fall within three themes: 1) addressing accessibility barriers to enrollment in telehealth research; 2) technical considerations regarding how software and hardware choices have implications for data collection and analysis; and 3) ethical considerations regarding the nuances of consent and privacy in telehealth encounters.
Conclusions
Overall, our approach demonstrates possibilities for the use of telehealth to study palliative care communication and provides a “how-to” example for unique telehealth considerations from data collection through analysis. These strategies can facilitate success with large-scale health communication research studies in the telehealth context.
... The study by Steindal et al. was rated as having a low overall RoB, with low ratings across most domains, except for some concerns in the selection of reported results [28]. The study by Zheng et al. showed a low RoB overall, with low ratings in randomization, deviations from intended intervention, and selection of reported results, but some concerns regarding missing outcome data [29]. The study by Allen Watts et al. had a low overall RoB with low scores in randomization, missing outcome data, and selection of reported results, though some concerns were noted in deviations from the intended intervention and outcome measurement [30]. ...
... Variability in study design and implementation approaches contributes to inconsistencies in findings. Zheng et al. and Sebastian et al. emphasized that differences in how telehealth interventions are designed and applied can lead to varied outcomes [29,31]. This variability affects the ability to compare studies and draw generalized conclusions. ...
The integration of telehealth into palliative care has garnered significant attention due to its potential to enhance both access and quality of care, particularly for patients in rural and underserved areas. This interest stems from the need to address geographical and logistical barriers that traditionally hinder palliative care delivery. Despite its potential benefits, the effectiveness of telehealth and the challenges associated with its implementation remain underexplored, necessitating further investigation. This study aims to critically evaluate the effectiveness of telehealth in palliative care by focusing on several key areas: its impact on access to care, symptom management, patient satisfaction, and cost-effectiveness. To achieve this, a systematic review was conducted, synthesizing data from various studies that investigated telehealth interventions within palliative care settings. The review employed a comprehensive search strategy across electronic databases, concentrating on randomized controlled trials (RTCs) published between 2014 and 2024. To ensure the reliability of the findings, low-quality and unrelated studies were excluded, and the remaining studies were meticulously analyzed for bias and methodological quality. The review's findings indicate that telehealth significantly enhances access to palliative care, allowing patients to receive timely and appropriate care without the need for extensive travel. It also improves symptom management and patient satisfaction, aligning to provide patient-centered care. Additionally, telehealth is cost-effective by reducing expenses associated with travel and in-person visits. These benefits highlight telehealth's potential to address some of the critical challenges in palliative care delivery. Despite its advantages, implementing telehealth in palliative care is not without challenges. Technological barriers, such as inadequate infrastructure and device limitations, pose significant hurdles. Integration issues, including the need for seamless incorporation into existing care systems, and varying levels of digital literacy among patients and caregivers, also impact the effectiveness of telehealth. Addressing these challenges is crucial for optimizing telehealth's implementation. Ensuring that telehealth solutions are accessible, user-friendly, and well-integrated into care practices is essential for fully leveraging its potential benefits.
... This aligns with the goals of the Australian Greater Choice for At Home Palliative Care model [4] through flexible and responsive access to specialist palliative care services to patients at home. Allowing the right care, at the right time and in the right place has been shown to reduce unnecessary hospital visits, improve patient outcomes and strengthen community knowledge, support and coordination [1,21,22]. Telehealth can enhance teambased care, collaboration, and patient access through facilitating communication between general practitioners (GPs), allied health staff, specialists and the acute sector. It has particular relevance for team-based support for complex conditions [20] and people with mobility difficulties. ...
Background
Patients receiving palliative care are often on complex medication regimes to manage their symptoms and comorbidities and at high risk of medication-related problems. The aim of this cross-sectional study was to evaluate the involvement of a pharmacist to an existing community specialist palliative care telehealth service on patients’ medication management.
Method
The specialist palliative care pharmacist attended two palliative care telehealth sessions per week over a six-month period (October 2020 to March 2021). Attendance was allocated based on funding received. Data collected from the medication management reviews included prevalence of polypharmacy, number of inappropriate medication according to the Screening Tool of Older Persons Prescriptions in Frail adults with limited life expectancy criteria (STOPP/FRAIL) and recommendations on deprescribing, symptom control and medication management.
Results
In total 95 patients participated in the pharmaceutical telehealth service with a mean age of 75.2 years (SD 10.67). Whilst 81 (85.3%) patients had a cancer diagnosis, 14 (14.7%) had a non-cancer diagnosis. At referral, 84 (88.4%, SD 4.57) patients were taking ≥ 5 medications with 51 (53.7%, SD 5.03) taking ≥ 10 medications. According to STOPP/FRAIL criteria, 142 potentially inappropriate medications were taken by 54 (56.8%) patients, with a mean of 2.6 (SD 1.16) inappropriate medications per person. Overall, 142 recommendations were accepted from the pharmaceutical medication management review including 49 (34.5%) related to deprescribing, 20 (14.0%) to medication-related problems, 35 (24.7%) to symptom management and 38 (26.8%) to medication administration.
Conclusion
This study provided evidence regarding the value of including a pharmacist in palliative care telehealth services. Input from the pharmacist resulted in improved symptom management of community palliative care patients and their overall medication management.
... However, it was not always clear whether it was a healthcare professional assessment or the CSs choice to opt out of PRO. In palliative care, gatekeeping, where healthcare professionals shield their patients from entering studies or using PROs because of a notion that it will be too burdensome for the patient to participate due to, e.g., disease burden or cognitive impairment, is a known concern [45,46]. Similarly, in a study implementing a digital version of the guided self-determination tool, the healthcare professionals had concerns on the patients' behalf about age, digital skills, and cognitive function [47]. ...
Background
Patient reported outcomes (PROs) are being used frequently in clinical practice. PROs often serve several purposes, such as increasing patient involvement, assessing health status, and monitoring and improving the quality-of-care at an aggregated level. However, the lack of representative PRO-data may have implications for all these purposes. This study aims to assess the association of non-administration of (not sending an electronic invite to PRO) and non-response to (not responding to PRO) electronically administered PROs with social inequality in a primary healthcare cancer rehabilitation setting. Furthermore, it examines whether the workflows surrounding PRO have an impact on non-administration and non-response.
Methods
This is a cross sectional study using routinely collected data from electronic health records and registers including cancer survivors (CSs) over 18 years booked for an initial consultation in a primary healthcare cancer rehabilitation setting using PROs for systematic health status assessment. During the study period two different PRO platforms were used, each associated with different workflows. Non-administration and non-response rates were calculated for sociodemographic characteristics for each PRO platform. Crude and adjusted odds ratios were calculated using univariate and multivariate logistic regression.
Results
In total, 1868 (platform 1) and 1446 (platform 2) CSCSs were booked for an initial consultation. Of these, 233 (12.5%) (platform 1) and 283 (19.6%) (platform 2) were not sent a PRO (non-administration). Among those who received a PRO, 157 (9.6%) on platform 1 and 140 (12.0%) on platform 2 did not respond (non-response). Non-administration of and non-response to PROs were significantly associated with lower socioeconomic status. Moreover, the workflows surrounding PROs seem to have an impact on non-inclusion in and non-response to PROs.
Conclusions
Non-administration of and non-response to PROs in clinical practice is associated with determinants of social inequality. Clinical workflows and the PRO platforms used may potentially worsen this inequality. It is important to consider these implications when using PROs at both the individual and aggregated levels. A key aspect of implementing PROs in clinical practice is the ongoing focus on representativeness, including a focus on monitoring PRO administration and response.
... Patients in rural regions experience geographic barriers to accessing palliative care (PC) teams or hospice (Rainsford et al., 2017). Although the evidence is limited, some studies (Head, Schapmire, & Zheng, 2017;Zheng, Head, & Schapmire, 2016) suggest that telemedicine can expand access to PC in rural settings, improve the management of uncontrolled symptoms, facilitate communication between patient, family and PC team, increase patient and caregiver satisfaction and reduce costs. ...
This work aims to describe and analyse the telephone consultation (TC) for palliative care (PC) patients at home and their caregivers provided by a PC team in Portugal in 2020. This study is observational, retrospective, cross-sectional and correlational, conforming to the STROBE checklist. Records of calls between 01/01/20 and 31/12/20 and clinical process consultations were analysed for trend clearance, including cross-tabulations to look for associations between call characteristics. Call data included information on the caller, patient, problem, utility and choice of service. The data were analysed using the statistical program SPSS software (V.26). During 2020, 494 calls were answered. The majority of the contacts were made by relatives and answered by nurses. The main reason for the contact was symptom management. The TC solved 92.91% of the problems, allowing the patient to remain at home, which is associated with a decrease in the number of hospitalisation days and admissions to the emergency department. The identification of the causes that motivated the calls and who solved them allows us to anticipate some needs that may be less controlled at home. Call distribution time may help allocate human resources better. TC is a viable alternative to traditional hospital follow-ups.
... Our results concerning HCPs' initial skepticism of introducing RHC in home-based palliative care emphasizes the requirements to raise awareness about the benefits of integrating technology in home-based palliative care and alter negative attitudes towards combining palliative care and technology. Furthermore, patients in the palliative phase may be interested in and willing to engage in new interventions [12,37], despite the HCP concerns. Our results suggest that once referred to RHC, patients had positive expectations regarding RHC and found it meaningful to contribute to the development of a new service that could potentially benefit others. ...
Background
Welfare technology interventions have become increasingly important in home-based palliative care for facilitating safe, time-efficient, and cost-effective methods to support patients living independently. However, studies evaluating the implementation of welfare technology innovations are scarce, and the empirical evidence for sustainable models using technology in home-based palliative care remains low. This study aimed to report on the use of the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework to assess the implementation of remote home care (RHC) a technology-mediated service for home-living patients in the palliative phase of cancer. Furthermore, it aimed to explore areas of particular importance determining the sustainability of technologies for remote palliative home-based care.
Methods
A secondary analysis of data collected by semi-structured interviews with patients with cancer in the palliative phase, focus groups, and semi-structured interviews with healthcare professionals (HCPs) experienced with RHC was performed. A deductive reflexive thematic analysis using RE-AIM dimensions was conducted.
Results
Five themes illustrating the five RE-AIM dimensions were identified: (1) Reach: protective actions in recruitment - gatekeeping, (2) Effectiveness: potential to offer person-centered care, (3) Adoption: balancing high touch with high tech, (4) Implementation: moving towards a common understanding, and (5) Maintenance: adjusting to what really matters. The RE-AIM framework highlighted that RHC implementation for patients in the palliative phase of cancer was influenced by HCP gatekeeping behavior, concerns regarding abandoning palliative care as a high-touch specialty, and a lack of competence in palliative care. Although RHC facilitated improved routines in patients’ daily lives, it was perceived as a static service unable to keep pace with disease progression.
Conclusions
A person-centered approach that prioritizes individual needs and preferences is necessary for providing optimal care. Although technologies such as RHC are not a panacea, they can be integrated as support for increasingly strained health services.
... As challenges often emerge at home and outside working hours, supportive care needs cannot always be met in a physical environment. Therefore, providing patients with supportive eHealth interventions accessible remotely over a secure connection might reduce daily life disruptions, hospital admissions, and healthcare costs (27,28). Previous research suggests that accommodating survivors' care preferences enhances their self-perception of autonomy and confidence in managing their health (26,29), potentially expediting symptom management assistance for patients (30,31). ...
Background
The advent of eHealth services offers the potential to support colorectal cancer (CRC) survivors and their informal caregivers (ICs), yet research into user needs and design requirements remains scant. This exploratory qualitative study addresses this knowledge gap by focusing on the development of a Digital Multicomponent Platform (DMP) designed to provide comprehensive support to these populations.
Aims
The objective of this research is to use qualitative methodologies to identify key user needs and design requirements for eHealth services. It seeks to propose and apply a multi-tiered framework for creating a DMP that encapsulates the needs of CRC survivors and their ICs.
Methods
Skype-based focus groups (FGs) were utilized to gather qualitative data from CRC survivors and ICs. This approach served to elicit crucial themes integral to the design of the DMP. A multi-tiered framework was subsequently developed to integrate user-centered design (UCD) principles and requirements with predetermined outcomes, eHealth services, and IT infrastructure.
Results
The first stage of the analysis identified five crucial themes: (1) the importance of healthcare system interaction via eHealth, (2) interaction between healthcare providers and peers, (3) lifestyle and wellness considerations, (4) platform content and user interface requirements, (5) caregiver support. The second stage analysis applied the multi-tiered framework, to determine the DMP that was conceptualized from these themes, underscores the significance of personalized content, caregiver involvement, and integration with electronic health records (EHRs).
Conclusion
The study offers novel insights into the design and development of digital supportive care interventions for CRC survivors and their caregivers. The results highlight the utility of user-centered design principles, the significance of personalized content and caregiver involvement, and the need for a unified health data platform that promotes communication among patients, healthcare providers, and peers. This multi-tiered framework could serve as a prototype for future eHealth service designs.
... 7 8 In some studies, they found that the use of NT in consultation was as effective as face to face. [9][10][11][12][13] It was even more positive for caregivers, reducing their anxiety and increasing their quality of life. 14 In this context, the implementation of services that combine volunteer support and NT can be an innovative, economically viable intervention to support the care of dying patients and their relatives. ...
Introduction
Volunteer support for patients and families at the end of life provides many benefits for the beneficiaries. New technologies could be a necessary resource in the accompaniment although, if there is little literature on palliative care volunteering in general, specifically on volunteering and new technologies, we find little information on the subject.
Therefore, the aim of this study is to implement and evaluate a training program for palliative care volunteers using new technologies in order to begin accompanying patients and families in hospital or at home.
Methods and analysis
A mixed-method study design will be conducted. We will recruit 20 volunteers and 70 patients in two years. Intervention: training of volunteers in new technologies and volunteer accompaniment of patients/relatives using technologies. The control group will accompany patients as usual.
Ethics and dissemination
Ethics approval for the ITV-Pal Programme project was granted by the Malaga Regional Research Ethics Committee. As new knowledge is gained from this project, findings will be disseminated through publications, presentations and feedback to clinicians who are participating in this study.
Trial registration number
NCT04900103 .
... While telehealth appears promising in delivering HBPC, many HCPs feel that telehealth is unsuited for the palliative care population because of patients' rapid deterioration, age, and illness burden [16]. HCPs may perceive palliative care as high touch rather than high tech, and they could be concerned about telehealth being burdensome for patients [22,23]. There is also a concern that the increasing amount of patient-generated data makes HCPs more attentive to the technology than to the patient, at the expense of actual support and caregiving. ...
... Telehealth studies must identify the barriers to and facilitators of the adoption of technology, as these requirements will influence the design, use, and function of the developed technology [24]. Previous literature reviews regarding the use of telehealth in palliative care have primarily focused on pediatric palliative care [25,26], older patients with chronic conditions [22,27,28], or patients with cancer [29][30][31] and have examined patient or caregiver outcomes and experiences [14,17,23,32]. Some systematic reviews have investigated the use of video consultations only [33] or of technology in general and specialized palliative care from multiple perspectives, such as those of patients, caregivers, and HCPs [34]. ...
Background: Telehealth seems feasible for use in home-based palliative care (HBPC). It may improve access to health care professionals (HCPs) at patients' homes, reduce hospital admissions, enhance patients' feelings of security and safety, and increase the time spent at home for patients in HBPC. HBPC requires the involvement of various HCPs such as nurses, physicians, allied health professionals, dietitians, psychologists, religious counselors, and social workers. Acceptance of the use of technology among HCPs is essential for the successful delivery of telehealth in practice. No scoping review has mapped the experiences and perspectives of HCPs regarding the use of telehealth in HBPC.
Objective: The aim of this review was to systematically map published studies on HCPs' experiences and perspectives on the use of telehealth in HBPC.
Methods: A scoping review was conducted using the methodology of Arksey and O’Malley. The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. A systematic search was performed in AMED, CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science for studies published in peer-reviewed journals between January 1, 2000, and August 23, 2022. The reference lists of the included papers were hand searched to identify additional studies. The inclusion criteria were (1) studies using qualitative, quantitative, or mixed methods; (2) studies including HCPs using telehealth with patients in HBPC; (3) studies on HCPs’ experiences and perspectives on the use of telehealth in HBPC; (4) studies published between January 1, 2000, and August 23, 2022; and (5) studies published in English, Portuguese, Norwegian, Danish, Swedish, or Spanish. Pairs of authors independently included studies and extracted data. The first 2 stages of thematic synthesis were used to thematically organize the data.
Results: This scoping review included 29 papers from 28 studies. Four descriptive themes were identified: (1) easy to use but technological issues undermine confidence, (2) adds value but personal and organizational barriers challenge adoption, (3) potential to provide useful and meaningful patient-reported data, and (4) mutual trust as a prerequisite for interpersonal relationships.
Conclusions: Telehealth in HBPC seems to be easy to use and may improve the coordination of care, time efficiency, clinical assessments, and help build and enhance personal and professional relationships. However, the introduction of technology in HBPC is complex, as it may not align well with the overall aim of palliative care from HCPs’ point of view. Further, changes in practice and requirements for HCPs may reduce motivation for the use of telehealth in HBPC. HCPs consider themselves to have central roles in implementing telehealth, and a lack of acceptance and motivation is a key barrier to telehealth adoption. Policy makers and telehealth developers should be aware of this potential barrier when developing or implementing new technology for use in HBPC
