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BACKGROUND

Case 3 explores telehealth and video-consulting in patients with heart failure (HF), with two qualitative sub-studies being undertaken in the context of a large, UK-wide randomised controlled trial. . Patients and carers were involved as part of patient/public involvement (PPI) in the study design and in refining the video-consulting standard operating procedures. 

SUB-STUDY 1: QUALITATIVE ASSESSMENT OF THE SUPPORT-HF RANDOMISED CONTROLLED TRIAL

Background: SUPPORT-HF is a UK-wide RCT of intervention (telehealth with customised clinical support) versus control (telehealth as a no-frills package). The qualitative sub-study is generating contextual data and significant events that inform wider understanding about telehealth for HF. The qualitative research questions are: [a] what is the patient experience of the service/ technology as delivered in the intervention and control arms? [b] what is the staff experience? and [c] what are the organisational and information governance challenges in delivering the service/technology and how are these challenges being addressed? 

Study design: The study design for the qualitative element of SUPPORT-HF consists of: [a] Qualitative interviews with up to 25 patients (selected from both arms of the trial) to assess their experience of the technologies and feed back to the RCT research team. [b] Qualitative interviews with up to 8 staff involved in delivering the telehealth intervention. [c] Qualitative interviews with national stakeholders identified by snowball sampling [d] Review of relevant policy documents. 

Progress to date: We have interviewed SUPPORT-HF’s 3 key research staff, 3 patient participants and one carer. Also 7 national stakeholders relevant to both sub-studies. We have conducted one significant event analysis with the SUPPORT-HF team. 

Emerging findings: Main themes from empirical work to date:

  • All those RCT staff and patients interviewed find the co-designed technology easy to use;
  • Patients interviewed do not find self-monitoring burdensome but vary in their insight;
  • SUPPORT-HF staff are using telehealth data (blood pressure, heart rate and weight) to offer individual patient management advice;
  • In a significant event, a patient’s deterioration was not picked up by the algorithms used in the SUPPORT-HF trial. This illustrated the challenge of distinguishing ‘signal’ from ‘noise’ in isolated physiological measurements and raised the question of whether the data captured via telemonitoring is sufficiently rich to enable prospective identification of HF patients at risk of deterioration;
  • Confusion in lines of communication and responsibility emerged where patients were managed both by the RCT team and the community HFSN service so it was agreed that patients would be given the choice of one or other service.

SUB-STUDY 2: COMMUNITY-BASED STUDY OF THE NURSE-LED HEART FAILURE SERVICE

Background: The community Heart Failure Specialist Nurse (HFSN) team want to explore the potential for remote video technology to improve the efficiency of the service and the patient experience. The aim of this sub-study is to help them evaluate and possibly ‘embed’ the new technology into their service. Our research questions are: [a] what are the organisational, regulatory (e.g. information governance) and other challenges to embedding remote video consultations for heart failure in a busy community cardiology service, and how might these be overcome?; [b] what is the patient and carer’s experience of such consultations?; and [c] what is the staff experience?

Study design: [a] Qualitative interviews with up to 12 patients; [b] Qualitative interviews with up to 5 staff; [c] Video recording of remote consultations using Facetime™/ Skype™; [d] Action research (the cycle of asking a question, collecting data, analysing data, initiating change and collecting more data to assess progress) to feed emerging data into service [re-]design. 

Progress to date: The following data sources have been collected: 
Service mapping through ethnography and interviews: [b] Observation of 4 traditional community HFSN consultations [b] interviews with 4 HFSNs [c] documentation of meetings of HFSNs (x6), regional Strategic Cardiac Network (x2) and the opening of the local Hospital’s ambulatory care unit. 

Documents and websites appraised: To understand the evidence base for the current service, the rationale for change and the explicit documented workflows for the HFSN team: National Heart Failure Audits (2012-20114); selected press and grey literature reports; HFSN Patient Assessment Template (iPad) and Activities Audit Proforma; local Trust’s inpatient HF management protocol and ambulatory unit iv diuretic protocol; a range of internet-based resources: community Heart Failure Specialist Nurse Pages, British Heart Foundation data repository, NICE pages on AliveCor and automated blood pressure monitors with irregular heartbeat (IHB) indicators. 

Video-consultations: 2 video-consultations between community HFSN and their HF patients plus carers have been successfully conducted and clinical decisions checked by face-to-face assessment.

Action research cycle: The above data have informed planning for a potential online element to HF care. Two early challenges have been addressed: the problem of assessing peripheral oedema (fluid retention) through a screen – which turns out to be possible with good lighting and instructions to patients or carers; and screening patients for Atrial Fibrillation which was solved through technologies (AliveCor smart phone App with electrodes or automated BP machines with IHB indicators) donated by PMS (Instruments) Ltd, a local Distributor. Much of the wider data has been used to help update the acute and community Trusts’ Heart Failure Service specifications and also to build a business case for a future integrated Cardiology out-patient service.

Emerging findings: Main themes from empirical work to date:

  • There are varying degrees of staff enthusiasm for video consultations; but as many HF patients have mobility problems and staff shortages and funding pressures demand smarter working they are keen to make it work
  • Some patients, initially digitally naïve, have learnt to use the iPad technology and been keen to continue with it (for both HF and non HF related reasons);
  • Communication between clinicians regarding frequent medications changes is a recurring issue in both on- and offline models due to lack of integration of health records;
  • HFSNs gain ‘rich data’ during home visits (e.g. ascertaining what medication patients are actually taking as opposed to what is prescribed); will telehealth mean loss of such data?;
  • HF patients often monitor diligently using telehealth equipment but may be reticent about contacting HFSNs when their monitoring shows possible decompensation
  • A new set of categories/language is emerging (driven by ambulatory IV diuretic and global assessment units): patients no longer classed as ‘inpatients’ or ‘outpatients’ but ‘ambulatory by default, trial of home’. Key performance indicators include ‘patient experience’ and ‘time spent at home’;
  • Whilst telehealth has traditionally been evaluated in terms of its efficacy in reducing hospital admissions and mortality, locally 70-80% of admissions where HF is a listed condition are not due to decompensation of HF but to decompensation of other co-morbidities. It follows that telehealth with the prevalent HF care model is unlikely to significantly reduce hospital admissions;
  • Staff morale is an issue: Whilst a purely economic model would reserve highly skilled staff for complex and challenging patients, such staff need see some ‘steady eddies’ to retain perspective and morale, so ‘automating’ these patients using a telehealth model may have unintended knock-ons for staff;
  • An aspect of service funding pressures is insufficient supervised exercise (cardiac rehabilitation);

Conclusion After initial delays with ethics/NHS R&D, both sub-studies are proceeding well with 21 participants to date. Preliminary emerging themes in both sub-studies concern the multiple clinical, technical and organisational issues at play when attempting to manage HF at a distance. HF is a serious and sometimes unstable condition that may decompensate rapidly; the HFSN’s role is highly specialised and subtle. Whether the kind of data exchanged through the various remote technologies will provide an adequate substitute for home or clinic visits is unlikely to have a simple or universal answer. We will be exploring the question of which patients might benefit from an online consultation model and whether and in what circumstances online consultations should be a substitute (or supplement) for traditional models of care.