key: cord-0720576-3hb93mdy
authors: Weaver, Meaghann S.; Lukowski, Joe; Wichman, Brittany; Navaneethan, Hema; Fisher, Alfred L.; Neumann, Marie L.
title: Human Connection and Technology Connectivity: A Systematic Review of Available Telehealth Survey Instruments
date: 2020-10-14
journal: J Pain Symptom Manage
DOI: 10.1016/j.jpainsymman.2020.10.010
sha: d0c6d4f88b2c6b33917ef3f346a3e1cc200894c8
doc_id: 720576
cord_uid: 3hb93mdy

CONTEXT: The current upsurge in telehealth use in palliative and hospice care warrants consideration of patient, family caregiver, and interdisciplinary palliative perspectives on telehealth modality and communication experiences. Currently, telehealth experiences and encounters are being described but not yet extensively evaluated by palliative care teams. OBJECTIVES: To locate survey instruments available to assess telehealth interactions, to determine the content and constructs covered by the available instruments, and to describe the patient populations previously surveyed by the existing instruments. METHODS: This study and its reporting followed PRISMA guidelines with the protocol registered in PROSPERO. Three databases were searched with over 3,100 articles analyzed for use of a telehealth survey instrument. RESULTS: Twelve telehealth communication assessment instruments were identified with mean length 20 questions, primarily Likert-scale responses with one inclusive of free-text and one qualitative inquiry survey. Three inquired only into modality, four queried communication, and five studied both modality and communication experience. Existing telehealth survey instruments are uni-directional in exploring patient or family experience with two inclusive of provider perspectives. Participant demographics are notably under-reported in telehealth experience studies with a frank lack of diversity in ethnic/racial, geographic, age, educational, and income representativeness in current telehealth survey instrument respondents. CONCLUSION: Palliative care teams may consider familiarity with telehealth survey instrument as an essential component to progress from description of telehealth use to evaluation of telehealth encounters. Current survey instrument outcome reports do not represent inclusivity or diversity, although telehealth is now being clinically applied across settings.

To locate survey instruments available to assess telehealth interactions, to determine the content and constructs covered by the available instruments, and to describe the patient populations previously surveyed by the existing instruments.

This study and its reporting followed PRISMA guidelines with the protocol registered in PROSPERO. Three databases were searched with over 3,100 articles analyzed for use of a telehealth survey instrument.

Twelve telehealth communication assessment instruments were identified with mean length 20 questions, primarily Likert-scale responses with one inclusive of free-text and one qualitative inquiry survey. Three inquired only into modality, four queried communication, and five studied both modality and communication experience. Existing telehealth survey instruments are unidirectional in exploring patient or family experience with two inclusive of provider perspectives. Participant demographics are notably under-reported in telehealth experience studies with a frank lack of diversity in ethnic/racial, geographic, age, educational, and income representativeness in current telehealth survey instrument respondents.

The COVID-19 pandemic has resulted in a rapid surge of telehealth use in palliative and hospice practices. [1] [2] [3] Prior to the coronavirus crisis, telehealth uptake in palliative care and hospice had been slow and under-studied. [4] [5] [6] Telehealth has historically been deployed to decrease distance between patients and palliative care professionals through the use of technology. 7, 8 Telehealth now creates physical distance, functioning to ensure access while affording an infection control barrier between patients and providers and preserving protective equipment. 9, 10 In recognizing the role for telehealth in the coronavirus pandemic and in the eventual post-pandemic world, the experience of palliative care patients interfacing with telehealth warrants urgent and deliberate attentiveness.

After the pandemic both providers and patients may remain draw to potentially attractive features of telehealth such as the ability to be seen at home, the ability to include family from other regions of the country in visits, and reductions in the need for physical office space. Patient and family caregivers deserve opportunities to provide feedback on whether telehealth encounters still maintain a sense of human connectedness and connectivity essential to the fields of palliative care and hospice care. An essential consideration in the goal of telehealth to extend care and communication reach with equity is to explore whether there has been inclusion of diverse populations for perspectives on telehealth experiences. 11 If telehealth is to serve as a partnership tool, access and assessments of telehealth necessarily should reflect community telehealth uptake while also attending to the patient, family caregiver, and interdisciplinary team communication experiences during an exponential increase in telehealth use in clinical practice.

A prior systematic review, aptly titled "telehealth in palliative care is being described but not evaluated," recognized the lack of available evidence documenting perceptions about telehealth encounters for patients and family caregivers. 18 To move toward a robust understanding of telehealth communication experiences, palliative care teams benefit from awareness of the survey instruments currently available to assess patient care experience using telehealth modalities. The objective of this review was to locate survey instruments used to assess telehealth interactions, to determine the content and constructs covered by the available instruments, and to describe the patient populations previously surveyed by the existing instruments.

This review and its reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines with the protocol registered in PROSPERO as CRD42020200468. 19 With the guidance of a medical research librarian, a search strategy was J o u r n a l P r e -p r o o f formulated using keywords and related subjects inclusive of ("telehealth," OR "telemedicine") AND ("survey(s)" OR "questionnaire") AND ("experience" AND "communication") AND ("validity" OR "reliability"). Three databases were searched [PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL)] for articles matching the inclusion criteria (Appendix 1).

Inclusion criteria included any paper that was published in English between 2005-2020 which contained the development or analysis of a telehealth survey. The year 2005 marked a transition time between telephonic-based to video-based telehealth. 20 Case report(s), editorial(s), letter(s), commentaries, and opinion documents were excluded.

Manuscripts were uploaded into EndNote for review of the potential inclusionary articles.

The initial search generated 4,887 citations with 7 citations hand-selected from prior study team familiarity with the literature. 21 Duplicate studies were removed and the remaining 3,154 articles were screened in accordance to the established inclusionary criteria. Three authors assessed each manuscript for potential inclusion initially at the title/abstract level (JL, BW, MW) and then at the full-text level so that each article was independently assessed by a minimum of two of the three participating reviewers (JL, BW, MW). Inter-rater reliability was notably >85% across the reviewers at each stage of manuscript review ( Figure 1 ).

All authors abstracted data to a shared virtual spreadsheet fitted with the articles and outcomes with a primary data extractor and a blinded data check partner assigned per survey. 

To explore the populations previously included in telehealth survey research, PubMed was searched as a sole "snapshot" database using each survey name and acronym. Two study team members engaged in data extraction using a shared document designed and piloted by the study team (MN, MW). The following items were obtained for each manuscript using the telehealth survey: patient or family caregiver or other respondent; pediatric or adolescent (defined as age <19 years), adult, or geriatric (defined as age >65 years) participants; geographic location; description of diagnoses; gender diversity; survey language; rural or urban setting; socioeconomic summaries; and ethnic/racial representation.

Twelve telehealth communication assessment instruments were identified and agreed upon by the study team members. The constructs measured by the survey instruments and exemplary survey questions depicting the communication modality or human interaction themes are provided in Table 1 Survey instruments were notably uni-directional with intention to assess a patient or patient family member's experience with telehealth rather than both provider and patient dyadic experience. Telehealth instruments could be applied to patient experience in 10 (83%) scales Table 1 . Cronbach's alpha is notably high for the available telehealth assessment instruments with recognition of generally high internal consistency reported for survey items. Validity reporting was notably diverse with many J o u r n a l P r e -p r o o f survey instruments describing validity as "good" or "reasonable" or "high" but lacking quantified measures of validity (Table 1) 

Forty-five articles were assessed for populations included in prior telehealth research. Table 2 provides a summary of respondent demographics according to telehealth survey instrument use. Telehealth survey instruments have primarily been used to assess patient J o u r n a l P r e -p r o o f experience (n=41, 91%) 23,24,28-64 with less frequent use to assess family caregiver (n=7, 16%) 28, 34, 37, 40, 65, 66 or medical provider experience (n=8, 18%). 23, 35, 40, [67] [68] [69] [70] [71] Telehealth surveys have been under-utilized to assess the experience of pediatric or adolescent cohorts with only two (4%) surveys used to assess the experience of pediatric care experiences or pediatric family caregiver experiences: TeSS for use in pediatric surgery telehealth communication 72 and TAM for pediatric telehospice care. 26 Fifteen studies (33%) included geriatric participants.

Demographic data for participants responding to the instruments is notably lacking in telehealth research papers with only 11 (24%) studies reporting on race or ethnicity, 18 (40%)

reporting on some form of socioeconomic status, 18 (40%) reporting on geographic urban or rural representation, and 37 (82%) reporting on gender. For those papers reporting demographic data, the majority of telehealth survey instruments respondents across telehealth survey scale options are noted to be Caucasian, with a post-secondary education, and not low-income (Table   3 ).

Palliative care teams may consider employment of survey instruments to assess patient experiences with telehealth. Palliative care and hospice research has focused extensively on descriptive methodologies to assess telehealth experiences. 18 While telehealth has been deemed usable and acceptable in palliative care outreach, the methodology to determine such has primarily been qualitative inquiry and small-scale studies. 73 Familiarity with the constructs assessed by available telehealth survey instruments is paramount in differentiating whether the focus is on the technology interface or the human interaction or both. The boundaries of the constructs do blur in certain question formats, such as in asking whether the participant J o u r n a l P r e -p r o o f experienced the telehealth interaction as equal to an in-person encounter. Not only do palliative care providers and researchers need to have familiarity with the constructs assessed, but they also benefit from understanding the strengths and weaknesses of the different assessment tools, including whether these tools are reliable and valid.

Reasons for prior slow telehealth uptake in palliative care and hospice include: patient discomfort with accessing or utilizing technology for medical care, family caregivers' concerns about the usability of technology for adequate support, concerns about the difficulty of technology use or reliability, and fear about jeopardizing the integrity of the provider-patient relationship with a screen barrier as compared to face-to-face care. 74 Lack of access to smartphone or computer services and the internet platforms required for telehealth use has been under-studied, 75 raising concern about telehealth reach into under-served areas such as tribal homelands and rural regions. 76, 77 In recognizing the impact of the coronavirus pandemic, there may be a norm-referenced shift in responses as survey questions regarding the "convenience" of telehealth as a communication modality are now confounded by not just time and distance saved but also perceptions of preventative public health measures. Even survey questions regarding "acceptability" are influenced by the now-normative approach to virtual interactions in nonmedical settings (schooling, extended family connectedness, community gatherings) as a public health safety measure. Palliative care researchers thus warrant caution in comparing responses to current telehealth surveys in relation to a pre-set, pre-pandemic standard. Limitations of this study include the restriction to English-language manuscripts. The limited number of research-based telehealth manuscripts and the lower quality of the available studies further limit overall application of findings.

Logical next steps in telehealth research in palliative care include the development and then use of validated telehealth experience survey instruments with paired consideration of not only technology interface but also measure of human interaction. The uniqueness of palliative care practice make the existing instruments helpful but likely insufficient for direct application.

Ideally future telehealth research would include triangulated patient, family caregiver, and provider scale use for comparison in perspectives of the same virtual encounters. Future telehealth research for patients receiving palliative care may consider methods which concurrently and longitudinally assess symptom burden, quality of life, and cost analyses.

Overall, this review revealed that instruments exist to measure patient and family caregiver perceptions of telehealth but the instruments are currently under-utilized. Caution should be taken to ensure telehealth support meets the cultural and educational needs of the communities which have not yet provided perspective on telehealth encounters. The lack of participant diversity in reporting on telehealth communication using telehealth survey instruments warrants attentiveness to inclusion to better understand perspectives on telehealth encounters. J o u r n a l P r e -p r o o f 

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