| Literature DB >> 35796686 |
Holly Walton1, Cecilia Vindrola-Padros2, Nadia E Crellin3, Manbinder S Sidhu4, Lauren Herlitz1, Ian Litchfield5, Jo Ellins4, Pei Li Ng1, Efthalia Massou6, Sonila M Tomini1, Naomi J Fulop1.
Abstract
INTRODUCTION: Remote home monitoring models were implemented during the COVID-19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID-19.Entities:
Keywords: COVID-19; care; patient engagement; patient experience; remote home monitoring
Year: 2022 PMID: 35796686 PMCID: PMC9349790 DOI: 10.1111/hex.13548
Source DB: PubMed Journal: Health Expect ISSN: 1369-6513 Impact factor: 3.318
Detailed methods for the survey and interviews
| Survey | Interviews | |
|---|---|---|
| Setting | This study took place in England, within NHS trusts or primary care practices/Commisioning Groups (CCGs) that implemented COVID‐19 remote home monitoring services. | |
| Sample—site selection |
Twenty‐eight services were included in our national evaluation. 25/28 sites agreed to take part in the patient survey (reported in this manuscript). Services were sampled using a range of criteria, including the setting (primary care or secondary care), type of model (prehospital, early discharge, both), mechanism for patient monitoring (paper‐based, app, both), geographic location (across different areas of the country), timing of implementation (implemented since Wave 1 of the pandemic or recently implemented) and involvement in the evaluation with the other evaluation partners (Imperial and IAU). Sites were recruited through an expression of interest process, whereby we presented our study at local and national meetings and asked sites to express interest in participating. |
A smaller sample of the overall study sites were included as case studies to conduct a more in‐depth analysis of patient experiences. Seventeen of the twenty‐five sites were selected as in‐depth case study sites using a range of criteria (setting, type of model, mechanism for patient monitoring, timing of implementation, involvement in evaluation with other partners). Four of the seventeen sites were purposively selected by NHSX for a more in‐depth analysis of patient experiences of tech‐enabled models of care; sites using different tech‐enabled platform were selected. |
| Sample–eligibility criteria |
To participate in our survey, participants needed to be:
18 years of age or older. Proficient in English (or one of the following languages: Polish, Bengali, Urdu, Punjabi, French and Portuguese). Eligible to receive COVID‐19 remote home monitoring services, and must also have been offered and received COVID‐19 remote home monitoring (national guidance: symptomatic with COVID‐19 and 65 years of age or older, symptomatic with COVID‐19, younger than 65 years of age but clinically extremely vulnerable. |
We aimed to interview up to six participants (patients or their carer) who had received, disengaged from or declined COVID‐19 remote home monitoring from each site. To participate in our patient or carer interviews, participants needed to be:
18 years of age or older. Proficient in English (or one of the following languages: Polish, Bengali, Urdu, Punjabi, French and Portuguese). Eligible to receive COVID‐19 remote home monitoring services. Been offered and either received or refused the service. |
| Measures |
Patient surveys were developed specifically for this study using relevant service documentation, The survey included closed questions on the service that patients received, their experience with the service and their engagement with the service. We also asked questions about patients' experience of tech versus analogue models. Questions were followed by open ended questions to give participants the opportunity to share wider thoughts (see Appendix The survey also included questions about participants' sociodemographic characteristics (gender, age, ethnicity education, employment, disability, sexual orientation, first language and geographical region). Before use, and to ensure that the questions were appropriate, the survey was reviewed by the study clinical advisory group and reviewed by members of the study's PPI group and the public before use. The survey was amended before use (e.g., amending wording, increasing font size, adding definitions for key terms). |
Interview topic guides were developed specifically for this study using relevant service documentation, The topic guide included questions about their journeys of remote home monitoring, their experiences of being ill and monitored at home, experiences with escalation and discharge, their engagement with the service and recommendations for improving these models (see Appendix Interviews also included questions about participants' sociodemographic characteristics (gender, age, ethnicity, education, employment, disability, sexual orientation, first language, geographical region). To determine whether questions were appropriate and relevant, we discussed the interview topic guides with our PPI members and the 70@70 nurses. The topic guides were amended accordingly. |
| Procedure—recruitment |
Both survey options (online and paper) included prefacing information with a background to the study, potential risks, indicating voluntary participation, anonymity and a description of how the data will be used. This page also included boxes that patients/carers were asked to tick to indicate their consent to take part in the study. NHS staff distributed surveys so researchers had no access to patient information.
NHS staff from participating services sent the patient survey to patients (or their carers if applicable) onboarded onto the service between 1st January 2021 and 11th June 2021. Sites chose how to disseminate the survey (post or text/email). Survey sites kept a record of the number of surveys sent out to determine the response rate. If patients were not able/willing to take part in the survey, they were given the option to ask their carer or family member to complete the survey on their behalf, reflecting on the patient's experience with the service. Patients/carers returned completed surveys directly to the study team for analysis, either electronically through REDCap or via post using pre‐paid envelopes. In addition to English, we also offered participants the opportunity to receive an information sheet and survey in six other languages (Polish, Bengali, Urdu, Punjabi, French and Portuguese). |
Participants were sent an information sheet before the interview and were asked to provide written consent before taking part in the interview. At the start of the interview, researchers also confirmed verbally that participants were still happy to take part in the interview. Study coordinators at each site purposively identified a sample of participants (a range of characteristics e.g., age, gender, ethnicity), and contacted them and asked if they were happy to be approached by a researcher. The researcher then contacted them via telephone or email to discuss the study. Participants were sent information sheets and consent forms and asked to complete these before the interview (either digitally or via post). If patients were not able/willing to take part in the interview, they were asked by site coordinators if their carer (if they have one) could be approached to capture their perceptions of the patient's journey and overall experience with the service. |
| Procedure—data collection |
Participants were approached by NHS staff at the place where they received their care (called ‘study coordinators in this manuscript), to take part in one of two ways: an online survey or a paper survey sent through the post with a free‐post envelope. Surveys were mostly distributed at discharge from the service, but some sites distributed surveys at onboarding to the service. Data collection took place between March and June 2021 (with surveys being sent retrospectively to patients who had received care from January 2021 onwards). Surveys were returned to the research team either electronically via REDCap or by posting surveys in pre‐paid envelopes to the team. Data from patient surveys sent via post were inputted into REDCap by members of the study team. All data were securely stored in the university Data Safe Haven via REDCap. |
A researcher arranged a time to carry out the interview. Each site had a different lead researcher, who conducted the interviews and liaised with sites on an on‐going basis. Interviews were conducted by six researchers. Interviews were carried out via telephone or an online platform (e.g., Zoom or MS Teams) as preferred by the participant. Interviews were designed to last between 45 and 60 min. The length of interviews ranged from 05:51 to 67:38 min. Data collection for interviews was conducted between February and June 2021. All interviews were semi‐structured, audio‐recorded (subject to consent being given), transcribed verbatim by a professional transcription service (TP Transcription limited) and kept in compliance with the General Data Protection Regulation (GDPR) 2018 and Data Protection Act 2018. Interview data and transcripts were securely stored on the university Data Safe Haven. Quotes were fully anonymized before use in dissemination. Although we offered translation services for interviews, all interviews took place in English. |
| Analysis |
The quantitative survey data were analysed using SPSS statistical software (version 25). Descriptive statistics were calculated to compare patient experiences of the service across patient groups and service models (as reported by patients and carers). In addition to the descriptive analysis presented in this manuscript, we also conducted further multivariate and univariate analyses on disparities and differences between different participant groups in relation to engagement and tech‐vs analogue modes, but these findings are presented elsewhere. For data relating to patient experience and engagement, all cases were analysed (whether carer, patient or unknown). ‘Unknown’ cases refer to cases in which it was not clear whether the patient or carer had completed the survey. Therefore, to avoid making assumptions, we have marked these cases as ‘unknown’ but included the data relating to engagement with the service as it was still correctly completed and included reflections on their experiences. Where data were missing for specific questions, cases were excluded from the analysis and the denominator was reported. The denominators differ across questions as all questions were optional; therefore, if people decided not to complete them, this led to missing responses. Additionally, there was question routing included within our survey, which meant that not all questions were appropriate for each participant to complete. Open‐text survey data were extracted into an Excel spreadsheet and coded inductively. We extracted data from three questions: additional feedback about the service ( We did not receive any surveys in any other languages other than English; therefore, all analyses were conducted in English. |
For patient interviews, data collection and analysis were carried out in parallel and facilitated through the use of RAP sheets as explained in Vindrola‐Padros et al. RAP sheets were developed per site to facilitate cross‐case comparisons and per population (to make comparisons between subgroups). The categories used in the RAP sheets were based on the questions included in the interview topic guide, maintaining flexibility to add categories as the study is ongoing. Research leads from each site added notes and summaries of findings to the RAP sheet following each interview, for each site. The data inputted into RAP sheets were inductively coded using thematic analysis by one researcher. Themes and subthemes were developed, discussed and agreed by the research team. We then developed a framework based on these themes and subthemes, and one researcher used this framework to extract quotes from all original transcripts. The coding framework included participants' views of the service, experiences of being referred, information received about the service and experiences performing remote home monitoring behaviours and barriers and facilitators to performing remote home monitoring behaviours. Analysis was conducted in English (as no interviews were conducted in other languages). Interview and survey data were triangulated. Interview and survey data were analysed separately initially, before being brought together to compare and contrast findings during analysis and interpretation. |
Abbreviations: CCGs, clinical commisioning groups; NHS, National Health Service; PPI, public patient involvement; RAP, rapid assessment procedure.
Summary of the characteristics of included sites for the patient experience study
| Characteristic | Number of sites ( | |
|---|---|---|
| Region | ||
| London | 5 | |
| South West | 6 | |
| South East | 5 | |
| North West | 5 | |
| North East | 2 | |
| East Midlands | 2 | |
| East of England | 0 | |
| Yorkshire and Humber | 0 | |
| Size of the population | ||
| <250,000 | 4 | |
| 250,000–500,000 | 8 | |
| 500,000–1 million | 8 | |
| >1 million | 5 | |
| % Urban (% rural) | ||
| 65–80 (20–35) | 8 | |
| 80–95 (5–20) | 7 | |
| 95–100 (0–5) | 10 | |
| Deprivation | ||
| % Of population in the most deprived quintile | ||
| 0–15 | 11 | |
| 15–25 | 7 | |
| 25–50 | 6 | |
| 50+ | 1 | |
| % Of population in the least deprived quintile | ||
| 0–15 | 12 | |
| 15–25 | 7 | |
| 25–50 | 6 | |
| 50+ | 0 | |
| Ethnicity (% of population non‐White) | ||
| 0–5 | 7 | |
| 5–15 | 10 | |
| 15–30 | 3 | |
| 30–50 | 3 | |
| 50–65 | 2 | |
Sites were characterized with respect to their population size, the proportion in urban versus rural areas and the proportion in the most and least deprived areas (with respect to national quintiles). For sites based on CCG areas, we calculated these characteristics using publicly available data at the lower super output area level mapped to CCGs, while for trust‐based sites, we used data derived from inpatient Hospital episode statistics admissions during the financial year 2019/20 (Nuffield trust analysis of Hospital episode statistics admitted patient care data set, 2019/20), in addition to web searches for the trust catchment populations. Ethnicity was also calculated using publicly available data.
Demographic characteristics of patient and carer survey respondents
|
| ||
|---|---|---|
| Survey respondent | ||
| Patient | 936 (87.6) | |
| Carer | 48 (4.5) | |
| Unknown | 85 (8) | |
| Total | 1069 (100) | |
Respondents able to select more than one option.
Deprivation scores are based on postcode, and are reported using deciles instead of quintiles (as with the site characteristics) to check that participant characteristics were representative across these 10 deciles.
Demographic characteristics of patients and carer interview respondents
| Demographic characteristic | Patient, | Carer, | |
|---|---|---|---|
| Patient or carer who took part in the interview | 59 (95%) | 3 (5%) | |
| Gender | |||
| Female | 31 (50%) | 3 (100%) | |
| Male | 31 (50%) | 0 | |
| Age | |||
| Younger than 50 years of age | 8 (13%) | 2 (67%) | |
| 50–64 years | 31 (50%) | ||
| 65–79 years | 21 (34%) | 1 (33%) | |
| ≥80 years | 2 (3%) | ||
| Living circumstances | |||
| Live alone | 5 (8%) | ||
| Household of 2 | 36 (58%) | 2 (67%) | |
| Household of 3 | 11 (18%) | ||
| Household of 4–5 | 9 (15%) | ||
| Household of 6+ | 1 (2%) | 1 (33%) | |
| Home ownership/renting | |||
| Own home outright | 26 (42%) | 1 (33%) | |
| Own home with mortgage | 16 (26%) | 1 (33%) | |
| Own home (not specified) | 3 (5%) | ||
| Rent from local authority/house association | 9 (15%) | ||
| Rents privately | 6 (10%) | ||
| Other | 2 (3%) | 1 (33%) | |
| Ethnicity | |||
| White British/English/Welsh/Scottish | 50 (81%) | ||
| White Irish | |||
| Any other white background | |||
| Black/African/Caribbean/Black British | 3 (5%) | ||
| Asian/Asian British | 7 (11%) | 2 (67%) | |
| Missing | 1 (2%) | 1 (33%) | |
| Not enough information | 1 (2%) | ||
| Age completed full‐time education | |||
| 15 years of age or younger | 13 (21%) | ||
| 16 years | 21 (34%) | ||
| 17–18 years | 16 (26%) | ||
| 19–21 years | 5 (8%) | ||
| >21 years | 5 (8%) | 1 (33%) | |
| Not known | 2 (3%) | 2 (67%) | |
| Highest educational qualification | |||
| No formal qualification | 14 (23%) | ||
| GCSE/CSE/O level or equivalent | 21 (34%) | ||
| A level/AS level or equivalent | 5 (8%) | ||
| Degree level or higher | 14 (23%) | 2 (67%) | |
| Other | 7 (11%) | ||
| Not sure | 1 (2%) | 1 (33%) | |
| Work situation | |||
| Working full time | 25 (40%) | 2 (67%) | |
| Working part time | 1 (2%) | ||
| Self‐employed | 2 (3%) | ||
| Not working | 1 (2%) | ||
| Homemaker | 2 (3%) | ||
| Retired | 23 (37%) | ||
| Furloughed | 1 (2%) | ||
| Not in work due to poor health or disability | 7 (11%) | ||
| Not sure | 0 (0%) | 1 (33%) | |
| Sexual orientation | |||
| Straight/heterosexual | 62 (100%) | 3 (100%) | |
| English as first language | |||
| Yes | 54 (87%) | 3 (100%) | |
| No | 7 (11%) | ||
| Not specified | 1 (2%) | ||
| Day‐to‐day activities limited by a health problem or disability | |||
| Yes limited a lot | 6 (10%) | ||
| Yes limited a little | 6 (10%) | ||
| Limited (but not specified how much) | 4 (6%) | ||
| No, not limited at all | 46 (74%) | 2 (67%) | |
| Not known | 1 (33%) | ||
| Relationship with patient | |||
| Spouse or partner | 1 (33%) | ||
| Son or daughter | 2 (67%) | ||
59 Patients took part in the interviews, but we have demographic characteristics for 62 patients as carers reported patient demographics too.
Summary of patients' remote home monitoring pathway and method of recording and reporting
| Survey participants ( | Interview participants ( | ||
|---|---|---|---|
| Pathway | |||
| COVID Oximetry @home (referred prehospital via community methods) | 749 (70%) | 44 (71%) | |
| Virtual ward (referred via early discharge from hospital) | 168 (16%) | 13 (21%) | |
| Both | N/A | 2 (3%) | |
| Unknown | 152 (14%) | 2 (3%) | |
| Not applicable | N/A | 1 (1%) | |
| Method used to record and report readings | |||
| Analogue (paper and phone) | 522 (49%) | 19 (31%) | |
| Tech‐enabled (such as text, app, weblink or automated phone) | 547 (51%) | 27 (44%) | |
| Combination of tech‐enabled and analogue | N/A | 14 (23%) | |
| Not known | N/A | 1 (2%) | |
| Not applicable | N/A | 1 (2%) | |
Summary of survey findings relating to participants' experience of and engagement with the remote home monitoring services
| Survey question and response | Percentage of survey participants, | Percentage range across sites | |
|---|---|---|---|
| Frequency of contact with staff member ( | |||
| Several times a day | 169 (16%) | 0%–45% | |
| Once a day | 276 (26%) | 7%–91% | |
| Several times a week | 270 (25%) | 0%–62% | |
| Once a week | 139 (13%) | 0%–31% | |
| Less than once a week | 142 (13%) | 0%–27% | |
| Not at all | 64 (6%) | 0%–27% | |
| Remote home monitoring activities that patients reported doing ( | |||
| Using the oximeter | 1014 (95%) | 81%–100% | |
| Completing a diary | 555 (52%) | 11%–89% | |
| Providing readings over the phone | 498 (47%) | 19%–93% | |
| Providing readings via text | 309 (29%) | 0%–74% | |
| Recording readings in a digital app | 264 (25%) | 0%–89% | |
| Providing readings via email | 15 (1%) | 0%–5% | |
| Seeking further help due to readings being lower than the recommended threshold | 344 (32%) | 18%–71% | |
| Checking over readings for issues | 215 (20%) | 7%–41% | |
| Support for remote home monitoring activities | |||
| Having someone to help use the oximeter when needed ( | |||
| Yes | 782 (74%) | 50%–100% | |
| No | 169 (16%) | 0%–44% | |
| Not applicable | 107 (10%) | 0%–22% | |
| Support taking and recording readings if needed ( | |||
| Yes | 666 (63%) | 44%–90% | |
| No | 190 (18%) | 7%–33% | |
| Not applicable | 201 (19%) | 0%–38% | |
| Experience engaging with service activities | |||
| Understanding the information they were given ( | |||
| Easy/very easy | 970 (93%) | 71%–100% | |
| Neutral | 57 (5%) | 0%–29% | |
| Difficult/very difficult | 13 (1%) | 0%–9% | |
| Monitoring using the oximeter ( | |||
| Easy/very easy | 1022 (97%) | 83%–100% | |
| Neutral | 18 (2%) | 0%–9% | |
| Difficult/very difficult | 9 (1%) | 0%–8% | |
| Recording readings ( | |||
| Easy/very easy | 913 (96%) | 75%–100% | |
| Neutral | 21 (2%) | 0%–25% | |
| Difficult/very difficult | 15 (2%) | 0%–4% | |
| Providing readings to the remote home monitoring team ( | |||
| Easy/very easy | 979 (97%) | 88%–100% | |
| Neutral | 21 (2%) | 0%–13% | |
| Difficult/very difficult | 10 (1%) | 0%–4% | |
| Seeking further help (if applicable) ( | |||
| Easy/very easy | 738 (86%) | 60%–97% | |
| Neutral | 75 (9%) | 0%–22% | |
| Difficult/very difficult | 44 (5%) | 0%–23% | |
| Challenges experienced with service activities ( | |||
| Using the oximeter | 34 (3%) | 0%–9% | |
| Recording readings in an app or diary | 27 (3%) | 0%–9% | |
| Providing readings to the service | 32 (3%) | 0%–13% | |
| Contacting healthcare professionals when needed | 56 (5%) | 0%–36% | |
| Seeking further help | 57 (5%) | 0%–36% | |
| Returning the oximeter | 136 (13%) | 0%–36% | |
| Other | 42 (4%) | 0%–14% | |
| Discussion and resolution of problems | |||
| Discussed problems with remote home monitoring team ( | 87 (35%) | 0%–100% | |
| Had problems resolved ( | 76 (33%) | 0%–100% | |
| Did not have problems resolved ( | 126 (54%) | 0%–100% | |
Respondents were able to select more than one response option.
Summary of survey and interview findings for factors influencing engagement
| Theme | Summary of survey and interview findings for subthemes | Example quotes |
|---|---|---|
| Patient factors |
|
‘Well I mean. It's quite straightforward isn't it. You just put it on your finger and let it settle down and read the figures off. Pulse‐pulse and oxygen levels. So no, I didn't find it complex at all’. (Site C, interviewee 2) ‘Really they just, in the main I was quite poorly, in fact I would say I was really poorly, it's the only time I've thought I was going to die in my life […] so really in the main my husband dealt with them, I couldn't really be remotely bothered with them if I'm honest and I can't remember what they told me, I don't think they told me a lot’. (Site I, interviewee 3) ‘But there are sometimes, I must admit, sometimes it makes you feel a little bit anxious [.] but then you can leave it – because you want to get things all right – but towards the end of the day it is so worth it – it is 100% worth it to have the oximeters reading every day to know; to understand where you are […] but I still guarantee that 100% it is a very good idea’. (Site A, interviewee 1) ‘Just really, they encouraged me to ring an Ambulance if I needed it. And I wasn't ringing them, because I felt like I was wasting their time, or whatever. I didn't want to, because I was worried they might want to take me in’. (Site B, interviewee 4) |
| Wider support and resources |
|
‘The nurse was very good, can't praise her really high enough. She was a friendly voice to speak to. Fair enough, you know, I've got a bit of a support system, but for somebody who hasn't got that much of a support system around them, I think that friendly voice would go a long way just to, you know, easing their minds’. Site D, interviewee 5 ‘And then near the end when I was getting a bit complacent, I was sort of almost well, a couple of times I didn't put them in and they would phone and say, “Are you okay? You've not submitted you reading.” So that was just really supportive, and I said it certainly reassured me’. (Site M, interviewee 1) ‘So my dad was initially involved in I think it was nine days, so the first nine days he took full care of mum to be honest clinically I was involved in a lot of the calls because I think my dad's getting quite stressed. […] so yes, he did the physical side of it. He would do the observations. And then he'd call me first thing in the morning, or he'd drop a text to say these are the observations. I'd call and have a quick chat, knowing the nurse was going to call us. So I guess it was a bit of a joint effort between us’. (Site F, interviewee 6) |
| Service factors |
|
‘I found, to start with I found the text messages useful but the longer they went on the more irritating. I was, I felt like I was chained to the phone and you know and to my equipment. So three times a day is, I know that's necessary to start with but I just felt that maybe twice a day after that might have been better’. (Site B, interviewee 3) ‘I think somebody should maybe discuss some of the other things. To me, I got the impression that as long as I as breathing and my oxygen levels were reasonable, that is all they were interested in. Where there were other things that I was a bit concerned about which I don't think were discussed unless I brought it up’. (Site J, interviewee 1) |