Self-Management and Telehealth - design, evidence and implementation

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1 ucl behavioural medicine CONTEXT Self-Management and Telehealth - design, evidence and implementation Drivers for changing the way we deal with chronic conditions Prof Stanton P Newman University College London CONTEXT Population pyramids for developed countries in 2000 and 2050 Health & Social Care Utilisation Those aged >64 years made up only 16% of the population but accounted for 47 percent of total hospital and community health spending (Evandrou, 2005). One in five older people had attended an outpatient or casualty department in the previous year and one in ten had a hospital inpatient stay The use of personal social services also increased exponentially with age (Evandrou, 2005) 700, , , , , , ,000 0 Context Informal Carers million informal carers in the UK, (10% of population). Various estimates of the value of unpaid support that carers provide: One estimate 87 billion (Buckner & Yeandle, 2007). Residential Care Places Costs of Residential Care ( b) Example of 3 long term conditions Diabetes is predicted to increase worldwide from 171 million in 2000 to 366 million in 2030 (Wild et al 2004) Congestive heart failure (HF) currently approx 900,000 in the UK. Prevalence increases sharply with age - 6.8% amongst those aged years Accounts for approximately 1-2% of healthcare spending Chronic Obstructive Pulmonary Disease (COPD) will become the fifth most common cause of chronic disability worldwide by 2020 (Lopez et al, 2006). Consultation rates now exceed those of ischemic heart disease by 2-4 fold and is one of the leading causes of hospital admission.

2 Low levels of adherence with traditional care change in culture DIABETES diet 50% of patients do not follow dietary advice exercise 55% report taking no exercise in a week smbg 67% monitor blood sugars less than recommended decisive move towards patients as clients patients are more critical of health care services patients are more informed of procedures and alternatives there is a greater emphasis on patient choice and empowerment medication 33% of patients do not take the recommended medications as prescribed Recognition that traditional health care favours acute and not chronic care SELF MANAGEMENT Sleep Awake Health Care traditional communication with patients key features exchanges are dominated by information provision didactic model implicit model is that knowledge is the key knowledge necessary but not sufficient use of fear messages unless you change your diet you will get another heart attack normally one to one beliefs and behaviour change traditionally, simple model of care/behaviour change information knowledge health related behaviour Much contrary evidence of assumption knowledge leads to behaviour change implies a passive role for patients patients are active processors and interpreters of information construct models about their world hold beliefs and attitudes Primarily responsibility for how condition is managed

3 Shift to patient centred approach to health care shift clinical practice and management towards a patient centred approach the patient s perspective of their illness and the implications this has for the management of their condition is increasingly being taken into consideration during health care Traditional/didactic information provision professionals experts directive patient passive repository limited adherence patient centred information exchange patient expert self-management patient active processor greater behaviour change Changes required when introducing self management to health care 1 patients a b c d e f changing their model of health care dependency power in health care professionals greater personal control and responsibility choices learning new skills engaging in their care Possible working in patient groups Staff changes required when introducing self management to health care 2 health care professionals a b c d e changing their model of health care decreasing patients dependency relinquishing some power accepting patients choice and some wrong decisions encouraging patients to engage in their care moving to new ways of working possibly with groups of patients non-didactic not primarily information Barriers to the mainstreaming of SM Good example of translational research Majority of translational research has involved technologies not a service innovation involving human capital A novel set of behaviours, routines and ways of working, which are directed at improving health outcomes, administrative efficiency, cost effectiveness or user experience. Greenhalgh et al Macro Issues in Innovating Change or Dissemination of Health Care Practice Economics & Finance Politicians, politics & pressure/advocacy groups Professional demarcations Fashion Media coverage Evidence The Evidence Base as a Barrier Some positive patient reported outcomes (QoL) not sufficiently persuasive to those who retain clinical and managerial responsibility for patient care To demonstrate clinical benefits in some conditions requires years of follow up. Few studies perform long term follow up to demonstrate, enduring behaviour change or clinical benefits & reductions in morbidity & mortality Many conflicting findings in studies performed under SM banner

4 The Individual & Condition as a Barrier Often assumed that SM is applicable to all individuals. About 50% reject an offer of attending - however often in context of a study Application of SM may be less appropriate to some individuals - favour more paternalistic approach Application of SM may be seen to be more appropriate in conditions that have a clear skill or monitoring component (e.g.diabetes, CHF). Condition may become so severe that shift is towards intensive case management Finance as a Barrier Few studies examine impact on costs and cost effectiveness Some findings - Cochrane review no evidence that lay led self-management education leads to reduction in health care utilisation. Foster et al 2007 Measures used in some studies do not lend themselves to analysis of possible economic benefit e.g. depressed mood Positive effect on PROMS do not always translate into economic benefit to health service SM intervention in RA that results in reduction in over the counter pain medication Organisational Barriers Even with excellent evidence translational of evidence into practice is complex and requires organisational change at a number of levels. Service innovation needs to seen to be compatible with needs values, norms and ways of working within the organisation. Relative power and interest (professional & financial) will influence likely adoption Perceived ownership of innovation requires careful management Ongoing training & support for hcps a necessity Professional Barriers Professional ways of working ingrained and often defended. Rewards associated with activity/skills embedded in organisation Flexible working not hallmark of many health care professions Hierarchy well established Costs of retraining require support and perceived loss of funding to other areas Background - Assistive Technologies Telehealth (TH): The remote exchange of data between a patient and health care professional(s) to assist in the diagnosis and management of a health care condition(s). Examples include blood pressure monitoring, blood glucose monitoring and medication reminders. Range of TeleHealth Technologies FIXED Home telephone E mail Web or TV - information and interaction Online support group Passive telemonitoring systems without feedback PORTABLE Mobile Phone (calls & SMS) PDA (Calls, SMS, Data, Picture & Video information)

5 Diversity of telehealth Equipment Background - Assistive Technologies Background - Mobile Phone for Diabetes TH Telehealth Some Equipment not suitable for purpose The promise of Telehealth

6 E Health & Diabetes Care Ekroos & Jalonen 2007 The range of purposes for introducing Telehealth Outcomes the participant Ability of the person with the chronic condition to: Better manage their symptoms, treatment, and the physical and psychosocial consequences of their condition to appropriately monitor their condition and seek help at appropriate times Maintain independence over their lives (includes caregivers) maintain quality of life and psychological well being in the face of the chronic condition Make the appropriate behavioural changes to play increased role in the management of their condition 3 3 Key Psychological processes Ability of the person with the chronic condition to: Feel more in control of their symptoms, treatment, and the physical and psychosocial consequences of their condition to feel empowered and supported to have adequate knowledge and information regarding the condition To feel confident in their ability to deal with the cognitive and behavioural changes required to adapt to the demands and impact of the condition 3 4 Key clinical & system outcomes for the introduction of telehealth Ability of the programme to: reduce symptoms and clinical indices of the condition to reduce health & social care utilisation and costs maintain quality of life and psychological well being in the face of the chronic condition Proximal Patient & carer Participation Organsational Change Change Professional behaviour Responsibility Taking appropriate action Multiplicity of processes & outcomes for telehealth interventions Distal Knowledge Beliefs Behaviour change Adherence Clinical State Reduce dependency Confidence Attendance Isolation Empowerment Disability Independence Health Care Utilisation Costs System reorganisation Quality of Life

7 Telehealth - Existing Evidence Base limited by Methodology & short term follow up Limitations to current Research on Telehealth! Criticisms of the literature: - pilot projects - short-term outcomes, do not assess long-term or routine use of technologies - studies do not meet robust evaluation criteria (Bensink et al 2006; Barlow et al 2007; Whitten et al 2007) WSD Recruitment Activity A Comprehensive Evaluation of the Implementation and Impact of Telecare and Telehealth across Health and Social Care the Whole System Demonstrator (WSD) Project 239 GP practices signed up >27,000 letters sent out inviting participation >9,000 home visits 6191 participants on trial:! 5721 telecare & telehealth users (half control, half installs)! 470 carers Singapore Telehealth - refusals Limited Usage of Devices Seng et al 2007

8 Telemonitoring use Many telemonitoring units that are available are not used. General reviews Systematic Review Home Telemonitoring - Pare et al 2007 Results - Clinical Pulmonary Diabetes Cardiac Hypertension Systematic Review Home Telemonitoring - Pare et al 2007 Results - Patient Attitudes & Behaviour re telemonitoring Pulmonary Diabetes Cardiac Hypertension Early signs of deterioration Decrease HbA1c Mixed findings complications Inconclusive re BP QoL improvement in a few studies Most studies sig decrease in Systolic BP Positive attitude Positive attitude Increased empowerment, control, & security Decreased adherence few studies Increased empowerment High compliance QoL improvement in a few studies High compliance & satisfaction Decreased adherence Systematic Review Home Telemonitoring - Pare et al 2007 Results - Health care Utilisation Systematic Review Home Telemonitoring - Pare et al 2007 Results - Economic Viability Pulmonary Diabetes Cardiac Hypertension Decrease hospital admissions Mixed results on hospitalisation, ER visits& physicians workload Decrease hospital admissions, ER visits length of stay Lack of evidence Pulmonary Diabetes Cardiac Hypertension Lack of evidence Lack of evidence Only preliminary evidence Lack of evidence

9 Systematic Review Home Telemonitoring - Pare et al 2007 Conclusion Based on the results of this review, home telemonitoring of chronic diseases seems to be a promising patient management approach that produces reliable data, empowers patients,influences their attitudes and behaviours and potentially improves medical conditions Diabetes Systematic review of telemedicine interventions to support blood glucose monitoring in diabetes Farmer et al 2005 Systematic review of telemedicine interventions to support blood glucose monitoring in diabetes Farmer et al 2005 Systematic review of telemedicine interventions to support blood glucose monitoring in diabetes Farmer et al 2005 Telemedicine solutions for diabetes are feasible and acceptable BUT evidence for their effectiveness in improving HbA1c or reducing costs while maintaining HbA1c levels or improving other aspects of diabetes management is not strong Further research should seek to understand how telemedicine might enhance educational and self management interventions and RCTs are required to enhance cost effectiveness. Report for Agency of Healthcare Research & Quality Gorman et al Nov 2008 Diabetes and IHT Driver for use feelings of empowerment & greater security re health Benefits in studies Confidence in insulin adjustment in relation to monitored feedback Perceived improved glycaemic control Easier treatment changes Better communication Improved personal accountability

10 survival Heart failure Self Management and telehealth interventions in Heart failure 5 6 Self Management intervention in Heart failure Self Management intervention in Heart failure 1 Intervention group - additional self management components delivered by trained nurse 2 Intervention group - additional self management components delivered by trained nurse Meeting with nurse in hospital prior to discharge Meeting with nurse at home - 1 week later elicit the patients understanding of their illness and its treatment and to clarify any misconceptions problem-solving approach used re: anticipated difficulties in taking medication unhelpful beliefs about the illness or treatment review each aspect of self-management to identify any difficulties encountered and to adopt a problem-solving approach to tackling them. Telephone call with nurse - 1 week later review progress and any problems monitoring deterioration limiting fluid & salt intake Self Management intervention in Heart failure Conclusions Brief self management intervention is not effective with existing HF patients Significantly reduces event free survival in new HF cases Possible that newly diagnosed are more ready to change behaviour Those who have had heart failure for some time may have established patterns of behaviour

11 Telehealth Heart failure and adherence behaviour Telehealth Heart failure and adherence behaviour Telehealth / monitoring Daily monitoring Control Group Standard Care 3 month follow up Participants: 101 patients of larger study Raemakers et al 2009 Ramaekers et al 2009 Telehealth Heart failure and behaviour Telehealth for 180 days after formal home care Control 28% control admitted to hospital in 180 day period vs none of the telehealth groups But the introduction of telehealth requires new ways of working Control group Telehealth group Dansky & Vaisey 2009 CHF Telehealth/telephone & Nursing Practice Removes on of the key features of nursing practice proximity (vision & touch) providing support (including family) Support for behaviour change/self management TEMPORAL ISSUE: Coming to know the patient appears to take place particularly during face-to-face contacts at the beginning of the care trajectory. If relationships with patients are well-established, seeing the patient becomes less important and a first assessment of the seriousness of patients complaints can be done by phone. CHF Telehealth/telephone & Nursing Practice Reduction in vision removes stereotypes driven by visual presence Removes rapid judgements based on vision Emphasis on auditory clues and capacity to listen Others who can give support to patients self-care tend not to be actively enrolled in providing or supporting care.

12 ucl behavioural medicine CHF Telehealth/telephone & Nursing Practice Telemonitoring transforms self-care into an obligation. If daily measurements not received then reminders sent. Introduces a daily surveillance of patients health condition that enables quality control over the patient s self-care. The increased temporal nearness to patients facilitates a form of care in which patients receive immediate care (medication or hospital admission) in a case of medical crisis. Question as to what this does to the relationship between patient and health care professional Different forms of care in face-to-face and telehealth-care services for heart-failure patients Face-to-face services Telehealth-care services Physical proximity Digital proximity intermittent monitoring daily monitoring open communication protocol-driven communication medical interventions and advice control and advice nurse as counsellor nurse as surveillant psycho-social care through dialogue psycho-social care through video self-care as option self-care as obligation Contextualised, Individualised, Personalised care that Immediate care that constitutes heart failure as illness Constitutes heart failure as disease Telehealth and Self Management! Telehealth has the capacity to provide long term support for behaviour change! Currently the two areas are relatively independent! The integration of technology as a component of self management at its inception has the potential to provide the integration of face to face SM and technology support thereafter. Telehealth and Self Management some questions! Do Telehealth & self management attract the same patients?! Some telehealth interventions appear as surveillance to patients! Does the introduction of technology introduce a different dependency. When to introduce Telehealth into the health service Increasing care need older Current policy perceived greater economic return Reduction in hospitalisation. But older and less tech savy But fails to change the culture and train and integrate telehealth into standard care FIN Little care need younger Early change the culture and train and integrate telehealth into standard care. Younger & more tech savy Greater ossibility of establishing cultural change

13 7 3

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