In many industrialized countries, the percentage of the population that is elderly is rising; more people are surviving with conditions that in the past were fatal, and obesity and a sedentary lifestyle are still increasing. As a result, the number of people living with a chronic illness is also rising rapidly. For example, in the UK the proportion of people living with a chronic condition has risen from 21% in 1972 to 35% in 2002; 17% of those with a chronic condition have a cardiovascular illness or hyper- tension. Approximately 25% have three or more chronic health problems. The healthcare systems designed over the 20th century faced different chal- lenges, initially to eradicate and then to control in- fectious disease and also to manage acute events.
There was less attention given to prevention and rehabilitation, and services are not well suited to caring for a large number of people living, often for decades, with a high level of disability or complex disease management regimes.As a result,across the world healthcare planners and providers are seeking new and more cost-effective models of care. Information technology in the form of the internet is also available and will affect how health- care is delivered.
As yet these changes are in their infancy and this chapter will describe three of the emerging methods and their implications for secondary care and reha- bilitation in cardiovascular disease (CVD). They are, firstly, care led by specialist nurses, secondly, care delivered by lay-people or fellow patients,and finally e-health and internet-led programs.
Nurse-Led Multidisciplinary Care
New models of care include the development of the specialist nurse role in cardiology. Several studies with nurse-led multidisciplinary team management have shown this to be effective in
reducing readmissions and improving quality of life in patients with chronic heart failure (CHF) and in particular left ventricular systolic dysfunc- tion (LVSD). A recent meta-analysis showed that comprehensive discharge planning plus post- discharge support for older patients with CHF significantly reduced readmission rates and may improve health outcomes such as quality of life without increasing costs.1These nurses are skilled and a relatively rare resource and it is important that they are used to the best effect.
A model of care that has been influential around the world is that developed by Kaiser Per- manente where there are three “cutting points” for providing different levels of patient care.2 The first, containing as many as 70–80% of patients, relies mainly on them providing their own self- management using simple educational materials provided by healthcare staff. The second, much smaller group comprises those requiring some- what more individualized care, formal educational and disease management programs, or regular telephone prompting about self-management. At the top of the apex (5–8%) are those who have very complex care needs resulting in repeated admissions to care. They would be offered a great deal of individualized multidisciplinary care. In this model the specialist heart failure nurse would operate mainly in the second area, helping to transition patients from acute care to be dis- charged to the care of primary care or community nurses. A “case manager” would organize all aspects of care for the few complex patients with multiple co-morbidities at the apex of the triangle. However, these staff would need a great deal of training and support resources and the debate is still unfinished as to the actual cost-effectiveness of this method.3,4
We have recently evaluated the role of the heart failure specialist nurse and found that one of the
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New Models of Care and Support
Jill F. Pattenden and Robert J. Lewin
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needs expressed both by patients and the nurses was for better advice on being physically active and managing emotions (this report is available on the British Heart Foundation website www.bhf.org.uk). Although these issues should be addressed in a traditional cardiac rehabilitation (CR) program, as yet there are very few programs prepared to take patients with heart failure, espe- cially those in class III and IV on the New York Heart Association scale. Also, many of these patients are elderly, have serious co-morbidities, mobility and transport problems, and little desire to visit hospital more than is absolutely necessary.
A solution we are currently developing and evaluating is a cognitive behavioral home-based self-management program organized around a workbook and written material tailored to the individual patient’s needs. This could be facili- tated either by the specialist nurse or from the local rehabilitation center by phone.
Nurse-Led Self-Care Management Programs
Many chronic diseases lend themselves to self- management as long as patients have the requisite cognitive skills, mental health, and health literacy, and a number of programs have been developed and evaluated. A recent review suggests that the effectiveness of self-management educational programs varies but that patients with diabetes and hypertension gain small to moderate benefit as measured by improved glycosylated hemoglobin levels and systolic blood pressure.5It is clear that effective self-care management programs differ from traditional “patient education.” Michael Von Korff has recently described the common features of effective chronic disease management pro- grams, which include: a personalized written care plan; education in self-management tailored to the individual’s age and circumstances; the monitoring of outcome and adherence to treatment; the tar- geted use of specialist consultation or referral. He also notes that to be effective staff facilitating the program must: recognize and manage anxiety and depression; use the cognitive behavioral principles of step-by-step change; develop with the patient collaborative problem definition and goal setting;
use motivational techniques and monitor the
success using outcome measurement.6
Although good self-care management has been shown to increase positive outcomes, people with several co-morbidities may sometimes feel over- whelmed and be unable to perform self-care strategies without additional individual and family support7and it is important that the edu- cational and emotional needs of a patient’s family and caregivers are attended to. In the UK, two cog- nitive behavioral cardiac rehabilitation programs that meet these criteria and are facilitated by a health professional and carried out mainly at home have proved both successful and popular with staff and patients. These are the Heart Manual8and the Angina Plan.9
Lay-Led Self-Care Management Programs
There are a number of apparent benefits in involv- ing lay-people in helping their peers. Firstly, they often work as volunteers or for relatively little remuneration, thus reducing health costs. Sec- ondly, they are plentiful, and a number of coun- tries are beginning to run short of trained healthcare staff. Thirdly, and most importantly, they are often more like the people they are trying to help than doctors and nurses. This is especially true when the lay-advisor also has the same chronic illness. It has been suggested that they may act as more credible role models than people who have not experienced the illness.
One model of a lay-led generic chronic-disease self-management program that has been adopted worldwide is known in the UK as the Expert Patient Programme, developed at Stanford University by Kate Lorig.10 In this program, two specially trained lay-people who have a chronic illness, using a manual and a preordained script, lead a group of other patients with chronic ill- nesses through a 2 hours a week, 6-week program.
It involves problem solving, decision making, and confidence building to increase self-efficacy; goal setting; relaxation techniques and educational sessions on managing pain; increasing activity levels; and dealing with medical personnel. Evalu- ations have shown that it reduced hospital admis- sions and use of healthcare resources, increased feelings of self-efficacy, knowledge about the
illness, and self-management behaviors, and improved some aspects of health status such as depression. Others have reported no change in use of healthcare resources, pain, shortness of breath, anxiety, or exercise.11 This program has not yet been tested with solely CVD patients and com- pared with the gains that can be obtained from the best examples of cardiac rehabilitation programs the advantages are still questionable.
A cardiac specific lay-led program, “Brave- heart,” has been developed and evaluated in Scot- land. This also uses pairs of trained “senior health mentors” to run groups, every 3 weeks for a year.
The study concluded that lay health mentoring is feasible, practical and inclusive, positively influencing diet, physical activity, and health resource utilization in older subjects with ischemic heart disease without causing harm.12
Lay Advice and Support
There is a good deal of evidence to support the use of peer mentors (also called lay advisors or buddies) with at-risk patients13 and cardiac patients. For example, peer advisors can provide social support to decrease heart disease-related depression, encourage healthy recovery, and decrease hospital readmission rate.14Peer support for cardiac surgery patients reduced anxiety and led to increased activity post surgery.15 Peer support groups for people 12 months after a cardiac event led to an increase in physical activ- ity and smoking cessation.16Home visits to post- MI patients by trained lay volunteers, who had attended CR themselves, significantly increased the likelihood of attendance at CR. Peer support was also shown to be useful in promoting exercise in seniors,17 and using peers as an extension to care by nurses to post-MI patients had positive outcomes for both patient and the peer advisor.18 Frequently the aim is to provide a network of mentors who will be effective self-management role models, and can act as friendly and support- ive listeners, facilitators, and sign posters to com- munity support. In most cases, peer mentors are people with the same disease, matched for age, gender, and socioeconomic similarity. There is evidence that brief interventions in healthcare set- tings are effective in promoting physical activity, and have longer-term impact when supported in the community by exercise advisors, written mate-
rials, and accessible facilities. Exercise buddies can help cardiac patients or those at risk of develop- ing cardiac disease to find an activity that is enjoy- able and fits into their life, is affordable and accessible, home based or in groups according to preference, and addresses psychosocial needs by combining fun and social activity with physical activity. The mentor can then motivate and support mentees, face to face or by telephone, through goal setting and provide motivational counseling to encourage people to be less seden- tary, walk more and use stairs.
Lay workers and volunteers offering peer support must be carefully recruited, and ideally matched by age and gender to their mentees, have reliable good quality training, task descriptions and ongoing support through newsletters, super- vision from healthcare staff, assessment of their work and constructive feedback. A toolkit,“Devel- oping a buddy network,” can be downloaded from www.bhf.org.uk/publications.
Internet and eHealth
The internet is a resource that many people already use to educate themselves about health (often called eHealth) and there is increasing interest in using it to provide more interactive health information. For example, computer- tailored nutrition education appears to be a promising way of motivating people to make healthy dietary changes. The individualized feedback it provides mimics face-to-face counsel- ing, and is more effective than general nutrition information. Telephone, e-mail or web logs can also be used to monitor physiological status, review care needs, and monitor self-management behaviors.
Nguyen et al. provide an overview of eHealth applications for patients with cardiovascular disease.19Such interactive health communications can be used to relay information, enable informed decision making, and promote self-care through professionally facilitated education and support programs. Internet resources can also provide automated tailored patient education, accessed independently by patients. They can also provide the potential for peer support from a virtual com- munity of cardiac patients. A study reported by Nguyen et al. suggests that combining all three ele- ments may enhance success.
Home-based CR using written materials and workbooks with brief communication, often by phone, has been shown to be as effective as con- ventional rehabilitation and the same methods lend themselves to the Internet. There is much research currently underway into methods of pro- viding CR via the internet and at least one study has already reported it to be as effective as more conventional methods.20 Within a few years internet-based two-way high quality video com- munication will be common for domestic users, opening up the possibility of people receiving individual consultations or even joining group- based programs from their home.
Currently there are some drawbacks to this method, the most obvious being access. It is still the case that in most countries use of the internet is low amongst elderly and deprived groups and some people with language difficulties or visual impairment may find eHealth methods impossi- ble. However, as the current generation of enthu- siastic users of the internet develop CVD and require rehabilitation and disease management interventions, it seems likely that they will expect healthcare, like many of their other services, to be available in this convenient manner.
Conclusions
The pressure to provide good long-term care to an increasingly large and disabled proportion of the population is leading to the development of new methods of provision. Cardiac care and rehabili- tation will be affected by these developments.
Although some of these changes are mainly moti- vated by cost saving, they may also have intrinsic value in their own right.
Specialist nurses visiting elderly, very ill or disabled patients at home, or coordinating that care through other workers, could use suitably modified home-based rehabilitation programs to bring help to those currently excluded. Better pro- tocols for the long-term management of CVD, triaging people according to need and integrating the healthcare among primary, secondary and social care can only benefit patients. Cardiac reha- bilitation services should not neglect the possibil- ity of taking a role in these developments as they have much knowledge and experience to offer.
Lay-led chronic disease management programs are being encouraged and adopted by many health
providers. The most widely implemented is the Stanford Chronic Disease Self-Management Program. Although it provided some benefits, it is not disease specific and early evidence from a national evaluation in the UK suggests that many patients do not wish to take part. It is not clear how it “fits” with CR or other disease-specific pro- grams. The best CR programs have powerful effects in reducing mortality (20%) and morbid- ity (quality of life, anxiety, depression, functional ability) and in cost saving that surpass the results so far demonstrated by generic lay-led programs.
Theoretically, a cardiac-specific program staffed by enthusiastic fellow CVD patients who have changed to a healthy lifestyle, developed skills to manage living with their heart disease and found ways to enjoy life, may encourage better uptake than one staffed by people with whom the patients feel they have little in common, especially in deprived communities. To date we are aware of only one such program, Braveheart; this small- scale study produced some useful gains and requires further attention and replication ideally in comparison to a conventional CR program. A rapid review of the current state of knowledge regarding lay-led self-management of chronic illness conducted by the NHS National Institute for Health and Clinical Excellence21 concluded that no real evidence of long term effectiveness exists for these lay-led programs in the manage- ment of chronic illnesses at community or popu- lation level, and they should be provided only as a part of a range of formal and informal resources.
Similarly, a review of disease management pro- grams for patients with heart failure recommended that although telecare and telemonitoring are increasingly used as a cost effective way of patient management and support, they should only be part of a range of multidisciplinary disease management program in cardiac disease, where services pro- vided are appropriate for each individual patient, many of whom gain reassurance and support from face-to-face contact with a practitioner.22
Lay advisors and buddies are already used in CR programs to encourage others to join or to help people prior to or after cardiac surgery. There is increasing evidence to support expanding their involvement. Properly trained and supported peer advisors, especially when matched on age, gender and years of education, may be at least as effective in helping patients change their health behavior and maintain those new behaviors as healthcare
workers. Long-term maintenance of gains has been the Achilles heel of CR; lay-led schemes based in the community may help to solve this problem. These schemes could be individual or group based, offer telephone support, and supply motivation and social support to encourage indi- viduals to take part in light- to moderate-intensity activities. These could include walking, resistance work and aerobic activity or activities already available in the community, such as line dancing, tea dances, yoga, or bowls. Lay workers may also have a role in primary prevention using volunteer advisers in individuals’ homes, workplaces, church settings, and community centers, or by telephone coaching and support after an initial assessment and discussion with healthcare staff.
The possibilities of eHealth to deliver and support people making lifestyle changes are enormous and are already being used. It is already possible for people to take part in home-based rehabilitation and in the next few years we can expect a number of research programs to report results.
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