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A service improvement project: the evaluation of patient adherence to healthy lifestyle post discharge from
cardiac rehabilitation
‘Your Past is Our Future’
Project team:
Nicola Chiffins - Cardiac Rehabilitation Nurse and Project Lead
Alan Darby – Cardiac Rehabilitation Exercise Physiologist
Catherine Hames - Cardiac Rehabilitation Dietitian
Keywords:
• Cardiac Rehabilitation
• Adherence to healthy lifestyle
• CHD risk factor modification
• Long term adherence.
Duration: April 2009 – November 2009
Report submitted for publication: March 2011
In association with the Foundation of Nursing Studies
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Introduction
The Addenbrookes multidisciplinary cardiac rehabilitation (CR) team consists of specialist cardiac
rehabilitation nurses, a sports scientist and a dietitian. The team provides specialist care focusing on
the objectives below:
• Helping the patient understand that the benefit of any lifestyle change is to reduce their risk
of having another cardiac event
• Providing the patient with the information and support they require as to identify their ‘risk
factors’ and choose the appropriate lifestyle changes
• Offering a short term, individualised programme of education and activity to support the
patient as they make and maintain these changes
• Helping the patient to approach the future with confidence
The team provides comprehensive cardiac rehabilitation to patients following diagnosis of an Acute
Coronary Syndrome (ACS), using the recognised three phases illustrated in Table 1. Phase 4 is
provided by primary care and the third sector. In 2009 340 patients (64% male, 36 % female) were
offered cardiac rehabilitation with 248 patients entering phase 3, taking an average of six months to
complete the full cardiac rehabilitation course.
Table 1. Phases of cardiac rehabilitation
Phases
Phase 1 Inpatient phase - providing education and support during hospital stay
Phase 2 Immediate post discharge– outpatient clinic and/or telephone support
Phase 3 Exercise and education programme – a choice of four programmes
across the Cambridgeshire area. Offering all patients five educational
talks and a 10-12 week exercise programme
Phase 4 Long term monitoring and maintenance of lifestyle change
As a team we recognise that following discharge, some patients may struggle to maintain positive
lifestyle and behavioral changes. We wanted to explore if the CR service could do more to support long
term adherence.
Aim and objectives of the project
The aim of the project was to evaluate the patient adherence to healthy lifestyle post discharge from
CR.
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Objectives:
• Explore and understand current practice
• Gather patient feedback using focus groups and questionnaires
• Review and theme feedback and develop action plans
• Evaluate current service for potential changes
• Facilitate changes to improve future care and practice
Evidence and literature review
A restricted literature review was undertaken using CINAHL (Cumulative Index to Nursing and Allied
Health Literature) database.
Search criteria: Lifestyle change, cardiac rehabilitation, patient compliance, health behaviors,
psychosocial support, self care, diet compliance, myocardial infarction, and secondary prevention.
Inclusion criteria: Literature post 1990, English language from all European countries, North America
and Australasia. Other countries in the world were not included due to the vast cultural differences.
Despite our strict inclusion criteria we recognize that CR standards and procedures vary world wide and
practice is continuously evolving.
Although cardiac rehabilitation is acknowledged as cost effective (NICE, 2007) and is a proven
treatment for individuals with ischemic heart disease resulting in reduced morbidity and mortality
compared to usual care (Joliffe et al, 2003), Beswick et al. (2005) identified that there was scant
evidence of research evaluating interventions aimed at improving adherence or compliance in cardiac
rehabilitation.
Recently the EUROASPIRE III survey illustrated that large proportions of coronary patients do not
achieve the lifestyle, risk factor and therapeutic targets for cardiovascular disease prevention (Kotseva
et al., 2009); however this survey did not give an explanation as to why people do not meet these
targets.
The research that was reviewed has been divided into four main topics associated with long term
adherence to lifestyle change.
Adherence to medication
Medication adherence in secondary prevention has long been recognised as a significant issue (Wood
et al., 2008). Non adherence to secondary prevention medication is noted as a significant issue in the
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prevention of recurrent myocardial infarction (MI) and mortality in the Coronary Artery Disease (CAD)
population (Maddox and Ho., 2009).
Adherence to dietary changes
Some surveys have revealed that patients make changes during cardiac rehabilitation but it is uncertain
if these trends continue in the long term. Scott et al. (2003) demonstrated that at three years post CR
patients had reduced compliance to dietary changes; however they still had healthier diets by
comparison to pre cardiac rehabilitation. This was echoed by Mead et al. (2006) who showed that
patients did not lose weight either during or at one year after cardiac rehabilitation but again
demonstrated improved diets in comparison to their pre cardiac rehabilitation state. This therefore
suggests that weight should not be used as a sole marker for dietary improvements.
Adherence to increased physical activity
The Addenbrooke’s cardiac rehabilitation team’s own outcomes identified that only 50% of the patients
completing cardiac rehabilitation enter into a long term exercise/activity programme. Similar trends
were demonstrated by Arrigo et al. (2008), who identified 40% adherence at one year post CR
discharge. Interestingly adherence rates were improved by a further 30% in those following an
intervention of 3 monthly reviews and physical activity records. More recent work by Macchi et al.
(2009) showed that adherence was 65% at one year.
Adherence to smoking cessation
Only one study was found that looked specifically at smoking cessation in cardiac rehabilitation (Scott
et al., 2003). This study looked at the adherence of patients given more intensive rehabilitation in
comparison to those with standard rehabilitation. This showed, as with the other lifestyle changes, that
although people stopped smoking during rehabilitation, a number restarted but not as many as had
stopped in the first place.
It should be noted that the majority of studies in the area of interest are dated. Many of the studies that
we have reviewed were completed in the USA where standards of care vary from that provided in the
UK, therefore the level of applicability to our population needs to be considered.
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Methods
To enable the evaluation of patient adherence to healthy lifestyle post discharge from CR, we chose to
focus on a sample group of patients 1-3 years post discharge from CR to allow us to gain sufficient
numbers to attend. If we used patients purely from one year post discharge we would not have had a
large enough sample size. The Addenbrooke’s trust service evaluation department recommended a
minimum cohort of 25 patient participants to insure credibility.
100 patients were sent letters inviting them to a patient and relative feedback day. The main focus of the
day was to allow patients to provide feedback on their own experiences and journeys and
compliance/adherence to risk factors post discharge. Different methods and approaches e.g. focus
groups and questionnaires were used to gather this feedback.
There was an overwhelming response to the patient invites (n=80); the first 55 respondents were
invited to the day. A copy of the letter of invitation can be seen in appendix 1.
Ethical practice
As this was a service improvement project ethical approval was not required, however good ethical
practice was followed. Before the invites were sent out, a check was performed to ensure that none of
the recipients had died. Although patients were consenting to participate in the day by responding to
the invitations and attending the day, at the start of the day they were also informed about the structure
of the day (see appendix 2) and that at any point they had the option to withdraw from proceedings.
Patients were fully informed of how the information from the day would be stored and used. This was
documented on the invite letter and included in the presentation on the day.
A detailed timeline of the day is provided in appendix 3.
Focus groups
Five focus groups were led by independent facilitators with a scribe present. These were held in
confidential rooms within the hospital. Each group lasted for approximately one hour.
Four questions were devised to provide a structure to the focus groups and to promote group
discussion (Table 2). To enhance validity of the information collected, the CR team members did not
take part in the focus groups so as not to bias the feedback.
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Table 2. Questions used within the focus groups
1a. What impact if any has cardiac rehabilitation had on your life?
b. What impact if any has cardiac rehabilitation had on your family’s life?
2a. Looking back if you were to go through this experience again what could have
helped you further?
b. Do you have any ideas for how the service can be improved?
3. What have been the highlights and difficulties of your recovery from your cardiac
event?
Participants were invited to express themselves verbally. Post-it notes were also made available to all
patients as an alternative method of expressing their views. These comments were read out by the
facilitator to enhance further discussion. The relatives group was asked the same questions but from a
relative’s perspective, there was an overwhelming response from this group. The notes from the focus
groups are presented in appendix 4.
The questionnaires
On completion of the focus groups, the participants were given time to complete a healthy heart
questionnaire (see appendix 5) which enabled the project team to examine the current knowledge and
individual’s adherence to the lifestyle advice which was previously given within CR. The questionnaire
focused on three main topics; activity, diet and medications.
Refreshments were given to the participants and updated information was available to all participants
to take away. This information was provided in the form of education stands and patient information
packs.
Educational stands were manned by, a smoking cessation organization (CAMQUIT) representative, a
dietitian, a sport scientist and a cardiac rehabilitation nurse.
Patient information packs contained the following:
• The patient quiz and pen (to be completed on the day)
• An evaluation form for the day
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• “BHF Heart Matters” magazine
• Two portions of fruit
• A tin of sardines
• Low calorie cereal bar
• Pedometer
• British Heart Foundation (BHF) donations bag.
Three prize hampers were offered as an incentive to complete the questionnaire. Three completed
questionnaires were randomly selected on completion of the day’s events and prizes issued.
Findings
The feedback collected during the focus groups was themed by all members of the CR team. The
questionnaire results were analysed separately but the findings will be discussed together with the
themes from the focus groups.
63% of patient participants completed the questionnaire, however it should be noted that not all the
questions were completed in every section. The relatives were not given questionnaires to complete.
Below is a graphic representation of the questionnaire results.
Figure 1.
Number of exercise days people believe they should be
undertaking V's actual number achieved.
0
20
40
60
80
Days per week
% response
Knowlegde
actual
Knowlegde 0 0 73 27
actual 3 3 65 29
1 2 3 - 5 7
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Figure 2.
Knowledge of recommended exercise intensity V's actual
exercising intensity.
0
50
100
150
% Response
Knowledge
Actual
Know ledge 0 100 0
Actual 6.25 87.5 6.25
Extremely light - lightLight - Somew hat
Hard
Hard - Extremely
Hard
Figure 3.
Response to best action to take in order to maintain blood
flow to the heart during exercise
2.9, 3%
85.3, 85%
2.9, 3%
8.8, 9%Arm movement
Leg movement
Lay down
Both leg and arm
movement
Figure 4.
Knowledge of warm-up duration V's actual warm-up
duration undertaken
0
20
40
60
% Response
Knowledge
Actual
Knowledge 9 48 24
Actual 24 19 33 15
0 - 5min 5min 10min 15min
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Figure 5.
Volume of participants still taking their cardiac
medications as prescribed by their GP.
26, 93%
0, 0%
2, 7%
Yes
No
Unanswered
Figure 6.
Volume of patients that have revisited GP for
cardiac related issues since discharge from CR
5, 19%
21, 81%
Yes
No
Figure 7.
Readmission for cardiac related issues post
discharge from CR
4, 18%
18, 82%
Yes
No
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Figure 8.
Comparison of knowledge of recommendation and
actual daily fruit consumption
0
20
40
60
80
100
120
Fruit portions/day
% Response
Knowledge 3 97
Actual 7 31 59
1 to 2 3 to 4 5+
Figure 9.
Comparison of knowledge of recommendation and
actual daily fruit consumption
0
20
40
60
80
100
120
Fruit portions/day
% Response
Knowledge 3 97
Actual 7 31 59
1 to 2 3 to 4 5+
Figure 10.
Comparison of knowledge recommendation and actual
number of oily fish portions consumed during one week
0
20
40
60
Oily fish portions
% Response
Knowledge 7 48 31 10 3
Actual 28 41 31
1 2 3 4 5
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Figure 11.
Food highlighted as good sources of Oily fish
17, 48%
3, 9%
1, 3%
4, 11%
9, 26%
1, 3%
Mackerel
Pilchards
Herring
Salmon
Sardines
Kippers
Table 1.
Risk factors that patients believe to contribute to CHD
Smoking 100
Stress 94
High cholesterol 94
Obesity 94
Poor diet 94
Family history 94
High BP 89
Physical inactivity 89
Drug abuse 72
Diabetes 67
Alcohol 67
Age 50
Extreme sports 28
Caffeine 22
Gender 17
Gambling 11
Swimming 0
Housework 0
Discussion
Diet and alcohol
The analysis of the questionnaire responses and focus group themes highlighted that many patients
had maintained positive changes to their lifestyles. For example 17 (59%) patients reported consuming
five or more pieces of fruits and vegetables per day, 21 (72%) patients reported consuming the
recommended two-four portions of oily fish per week. Although positive there is evidence that these
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figures could be improved, with 97% of patients reputably aware that they should consume 5 or more
pieces of fruit and vegetables, but only two thirds (59%) actually managing to meet the target.
These trends were reinforced during the focus groups where diet was a common theme, with the
majority of comments highlighting improvements to the diets of both patients and their families.
Patient quote:
“My family eats healthier – improvement in diet, reading packets more, made my wife more
concerned about my diet, increased fish intake”
Patient quote:
“Watching what we eat more than we did”
Most participants were unaware of the value of one unit of alcohol within different alcoholic beverages,
with many participants quoting one pint of beer or one glass of wine as one unit. Only one person
reported to drink over the recommended safe limits for alcohol, however with many people not correctly
answering the questions of what a unit of alcohol is, many are likely to be drinking over the
recommendations e.g. those that reported drinking 15 units per week may perceive one pint of standard
strength beer as one unit and would therefore actually be consuming 30 units per week.
Although, it is well documented that saturated fat has a greater impact on cholesterol than any other
food, knowledge of saturated fat was poor. Although this highlights a requirement for more education it
should be noted that when these patients were attending cardiac rehabilitation there was limited
dietitian input in the team and therefore would not be a true representation of the current service.
Risk factors
When asked which risk factors they had addressed six people said none. It would be interesting to
investigate further as to whether these patient participants believed that they had no risk factors to
change or whether they decided not to address the risk factors that they are aware apply to them.
When exploring patients’ knowledge on CHD risk factors it was positive to note that the majority of
modifiable risk factors where highlighted by 89% of the group. Surprisingly several non modifiable risk
factors such as gender and age were not highlighted by most. Perhaps it is that people did not consider
these risk factors as they are unable to act upon them.
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When asked about the risk factors that they were struggling with the most, diet and weight loss were
the most common responses. A dietitian was only introduced to the service two years ago and
therefore many of the participants would not have had a dietitian available to them. We would expect
this to be less of an issue for current patients. Future work could look at the impact on patient outcomes
such as weight and abdominal girth, since the introduction of a full time Dietitian to the service.
Stress and sadness were highlighted by two questionnaire respondents as ongoing risk factors:
Patient quote:
“We need much more guidance on psychiatric issues”
Patient quote:
“The psychological impact shock, I needed reassurance to realise what I can do”
Patient quote:
“Perhaps a greater understanding of good days and bad days and the emotional ups and
downs”
This was mirrored in the focus groups where two main themes; psychological impact and support for
relatives/family/friends were highlighted.
Psychological impact
There was a strongly defined psychological theme expressed across all of the focus groups by both
patients and their partners. It was very evident that more than 12 months post discharge patients still
expressed concerns with regards to the psychological impact of their event. One patient participant
wrote:
“The lasting after effect is a lingering fear (unspoken sometimes) is always there, and left
uncontrolled could cause another event.”
The evidence gathered from this day highlighted that psychological support is an area that is under
represented within the current service. Psychosocial interventions have been developed in CR
programmes and are advocated by the National Service Framework (NSF) for Coronary Heart Disease
(CHD) (NSF, 2001) and the National Institute for Health and Clinical Excellence (NICE, 2007). The
team has recognised this as being one of the most important areas for service development and will
use this work to improve future psychological support available to all patients.
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Within the current service the Hospital Anxiety and Depression (HAD) scale is used as a psychosocial
screening tool prior to entry and on completion of the programme. It would be interesting to compare
the qualitative evidence gathered from the focus groups with quantitative data extracted from thee HAD
scales.
The overall impact of the CR service
Patients were asked what impact if any cardiac rehabilitation had on their life.
Patient quotes:
“Enormous impact. I didn’t know what to expect of an MI, it was a fantastic support and
guidance”
“Cardiac rehabilitation removed anxiety for me “
“Cardiac rehabilitation enabled me to get back into normal life – building confidence”
“Promoted positive thinking”
“Made me think more about what I was doing - look on life differently”
“Cardiac rehabilitation made me feel more alive”
The statements above demonstrate the high level of support that the patients felt they received from
CR, however it highlighted to the team the importance of getting a balance of encouraging patients to
get back to “normal life” whilst continuing to promote the management of risk factors and secondary
prevention. From the focus group there was a general consensus that there is a tendency to become
more relaxed with what were initially good intentions.
Being with other people who have been through a similar event was also identified as being of high
importance for patients. By being able to identify with what others have been through, patient
themselves seem to provide a level of support that the health care professional cannot attain.
Patient quotes:
“Helped me to reflect on lifestyle support from other patients not just me alone”
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“A reassurance and support facility where people are all in the same boat and understand what
you are feeling, and help you get through difficult emotions and situations”
Support for relatives/friends
Over recent years CR services have developed to provide high levels of support for the patients
following an acute cardiac event. The impact on friends and relatives however is seldom understood or
addressed. During the focus groups some patients described a lack of control for themselves and their
relatives during their recovery process.
Patient quotes:
“Relatives are not ‘in control’ in same way as patient – they are sometimes more worried”
“My son and daughter keep saying ‘don’t do this and that’”
“The wife seems to ‘fuss’ a little more”
This made the team question the amount of support being provided by the existing CR programme for
patient relatives. Hong et al. (2005) suggested that a shared understanding and commitment to regular
exercise may protect against interpretations of support attempts as controlling or over bearing.
However Kiecolt-Glaser and Newton (2001) state that partner support does not necessarily lead to
beneficial health behaviour changes. Wood et al. (2008) however showed positive results when
patients and relatives attend together on the recently completed Euroaction trial.
We currently invite patients to the educational talks with their relatives or friends; however, it is currently
not financially viable to have relatives attending the full exercise programme. Taking into account
patient’s views and the evidence above, increased relative support is an area that should be considered
with regards to future service improvement.
One child aged eight years old wrote a letter about her experience of her father having a heart attack.
This highlighted to the team that there is no support available within the current service for children
whose parents or grandparents have a cardiac condition. The team feel that this is an area that could
be addressed by providing child friendly educational materials. Permission was attained from the child’s
parents to include the letter in this report (see appendix 6).
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Activity
In the activity section 32 participants (94%) reported exercising between 3 and 7 days per week. This
vastly exceeds national figures of 39% and 29% of male and females respectively, meeting national
guidelines for physical activity.
This clearly demonstrates that the majority of patients are continuing to undertake sufficient volumes of
exercise to elicit cardiovascular benefits, 12 months post discharge from CR.
As with all of the questionnaire results the validity of the self reporting process must be considered.
Although many self reporting systems have demonstrated a reasonable validity within the adult
population, we must take into consideration that our questionnaire has not been validated or trialed on
any population prior to its use in this project.
Feedback from the focus groups seemed to link very well with the high levels of reported activity.
Patient quotes:
“Now I go to another exercise class in the community – it helps me to do it”
“Helped re-establish exercise program – impetus”
The focus groups also highlighted the substantial benefits of the exercise class
“Drawn my attention to the benefits of the exercises”
“Before my bypass I was unaware of safe exercise limits“
All patient participants answered correctly to the optimal intensity of exercise, demonstrating that
patients are continuing to exercise at a safe and effective level.
Only 15% of patient participates reported undertaking the required duration of warm up, this appears to
be due to a misconception of the standard requirement, with only 24% of participants recognizing the
correct 15 minute warm-up duration. Within the current CR programmes, literature on guidelines for
warm-up duration is issued to patients. This was not available when many of the project participants
undertook their CR course, thus we would expect that patient knowledge of warm-up guidelines should
be better within the current service.
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Medication compliance
Good medication compliance was highlighted with 100% of patient participants continuing to take all
prescribed medications. This is not consistent with much of the research in the area; for example,
Niteesh et al. (2007) demonstrated only 50% compliance to beta blocker and ACEI medication at two
years post discharge with Kramer et al. (2006) highlighted just 45% adherence to beta blocker therapy
one year post discharge.
Relatively low readmission rates were also seen with just four participants reporting readmissions due
to cardiac complaints. Future studies could compare this data to admission rates for those patients who
could not attend cardiac rehabilitation.
Reflections from the day
Despite several difficulties in the build-up to the day, the team felt that the event seemed to run very
smoothly.
On arrival many patients seemed pleased to see familiar faces – both staff and fellow patients from the
rehabilitation circuit. From the introductory presentation the patients seemed very buoyant and excited
about the day ahead. The vibrant atmosphere continued throughout the day, many patients
commenting on how they wanted to give back to the service but also finding the updates very helpful.
Overall the team felt that the day was a great success for both the patients and the CR service. The
one downside was receiving reports of unsatisfied patients whom were not invited to the event due to
communication breakdown during the planning stage.
The team have subsequently reflected on the questionnaire and identified that some of the questions
used proved less effective than anticipated. It was also recognised that there was a variation in the
numbers of completed questions in each questionnaire. This may be due to the volume of questions
and the order in which the questions were laid out. In hindsight, it would have been beneficial to have
conducted a pilot study to examine the validity of the questions used.
It should also be noted that there may be bias in testing the patient’s knowledge as displays of
information were provided for people to look at while waiting for the focus groups to start. People mixed
while they completed their questionnaires and also could fill them in with the help of their partners. This
may have affected their answers on current behaviour. The team also acknowledges that people will
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often try to please and therefore give the desired answer as opposed to reporting their realistic
behaviours.
The team is also aware that the patients who attended the day are those patients who are likely to have
changed their behaviour. Therefore these results may not be reflective of all patients who attend
cardiac rehabilitation. To gain a better picture, future projects could look at reviewing all patients
annually.
Summary
The results from this project show that at around 12 months post discharge, patients do seem to be
adhering reasonably well to the lifestyle modifications made immediately following their cardiac event.
Despite this there are several areas where patient knowledge of risk factors could be improved.
Several areas for service improvement have arisen from this project, none more so than the importance
of additional psychological support for not only the patient but also their close family members. On
recognizing this the service is currently perusing a “Patient Perspective” educational talk run by former
patients whom will voluntarily return to the service to offer additional support to current patients.
The overwhelming cooperation and feedback during this project has highlighted that although there
may be several areas for potential improvement the overriding consensus is that the current service
provides a very high standard of care and support.
The findings of this project could be used as the basis of a research project into long term adherence,
utilizing more robust data such as measurements of functional capacity, weight and cholesterol.
This project did not distinguish between those that were continuing with a long term community based
exercise scheme (Phase 4) and those that where not. This may be an area for future exploration.
During this project vast numbers of patients expressed how beneficial they found both the service and
this project day. Individual annual reviews or an educational update day with the CR team may be
helpful to monitor patient progress and support their lifestyle modifications.
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References Arrigo, I., Brunner-LaRocca, B., Lefkovits, M., Pfisterer, M., Hoffmann, A. (2008) Comparative outcome one year after formal cardiac rehabilitation: the effects of a randomised intervention to improve exercise adherence. The European Journal of Cardiovascular Prevention and Rehabilitation. Vol. 15. pp 306-311. BACR (2010) Psychological Issues for Health Professionals Working in Cardiac Rehabilitation – Course Manual. Cardiac Rehab UK. Beswick A.D., Rees, K., West, R.R., et al. (2005) Improving uptake and adherence in cardiac rehabilitation: literature review. Journal of Advanced Nursing. Vol. 49. No. 5. pp 538-555. Choudhry, N.K. and Winkelmayer, W.C. (2008) Medication adherence after myocardial infarction: a long way left to go. Journal of General Internal Medicine. Vol. 23. No. 2. pp 216 – 218. Craig, R., Mindell, J. and Hirani, V. (2008) Health Survey for England. Volume 1: Physical Activity and Fitness. The Health and Social Care Information Centre. Department of Health (2001) National Service Framework for CHD. London: Department of Health. Dornyei, Z. (2003) Questionnaires in Second Language Research: Construction, Administration and Processing. New Jersey, USA: Lawrence Erlbaum Associates. Kotseva, K., Wood, D., De Backer, G., De Bacquer, D., Pyörälä, K., Keil, U. (2009) EUROASPIRE III: a survey on the lifestyle, risk factors and use of cardioprotective drug therapies in coronary patients from 22 European countries. Eur J Cardiovasc Prev Rehabil. Vol. 16. No. 2. pp 121-137. Kramer, J.M., Hammill, B., Anstrom, K.J., et al (2006) National evaluation of adherence to beta-blocker therapy for 1 year after acute myocardial infarction in patients with commercial health insurance. American Heart Journal. Vol. 152. No. 3. p 454.e1-454.e8. Macchi, C., Polcaro, P., Cecchi, F., et al. (2009) One year adherence to exercise in elderly patients recieving postacute inpatient rehabilitation afetr cardiac surgery. American Journal of Physical Medicine and Rehabilitation. Vol.88. No. 9. pp 727-734. Maddox, T.M and Ho, P.M. (2009) Medication adherence and the patient with coronary artery disease: challenges for the practitioner. Current Opinion in Cardiology. Vol. 24. No. 5. pp 468-472. Mead, A., Hickson, M., Collier, T., Fox, K., Froster, G. (2006) Dietary improvements and impact on weight reduction in patients attending a cardiac prevention and rehabilitation programme – a longitudinal study. Journal of Human Nutrtition and Dietetics. Vol. 19. No. 6. pp 469-469. National Institute for Health and Clinical Excellence (2007) MI Secondary Prevention. Secondary Prevention in Primary and Secondary Care for Patients following a MI. London: NICE. Choudhry, N.K., Winkelmayer, W.C., Kotseva, K., et al. (2009) EUROASPIRE III: a survey on the lifestyle, risk factors and use of cardioprotective drug therapies in coronary patients from 22 European countries. European Journal Cardiovascular Prevention and Rehabilitation. Vol. 16. No. 2. pp 121-137. Scott, I.A., Lindsey, K.A., Harden, H.E. (2003) Utilisation of out patient cardiac rehabiliation in Queensland. The Medical Journal of Austrialian. Vol. 179. pp 341-345. Wood, D.A., Kotseva, K., Connolly, S., Jennings, C., Mead, A., Jones, J., Holden, A., De Bacquer, D., Collier, T., De Backer, G., Faergeman, O. on behalf of EUROACTION Study Group (2008) Nurse-coordinated multidisciplinary, family-based cardiovascular disease prevention programme (EUROACTION) for patients with coronary heart disease and asymptomatic individuals at high risk of cardiovascular disease: a paired, cluster-randomised controlled trial. The Lancet. Vol. 371. No. 9629. pp 1999-2012.
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Appendix 1: Copy of letter of invitation to patient feedback day Cardiac Rehabilitation - ‘Your past, Our future’
Dear The Addenbrooke’s Cardiac Rehabilitation service constantly strives to improve the standard of care provided to all patients. We are currently reviewing the progression of patients following discharge from the Cardiac Rehabilitation service, and would like to invite you to contribute to this process. This will enable us to review our current practice and make relevant improvements to the future care provided to patients following cardiac complications. We are planning to hold an informal / non-clinical event at Addenbrooke’s Hospital. This will give you an opportunity to catch up with the latest in cardiac rehabilitation whilst we gather an insight into your lifestyle following cardiac rehabilitation. This focus group will be split into two separate sessions taking place on Friday 13th November 2009 in the Addenbrooke’s Treatment Centre, Seminar Rooms 6a & 6b. 2.00pm-3.30pm 6.00pm-7.30pm If you would like to attend this focus group please let us know by calling the Foundation Trust Office on 01223 256256 or e-mailing your details to [email protected]. Please also let us know which session would suit you best. As this project is funded through a charity we are able to provide a light selection of food and drinks at each session. We are also able pay parking fees and travel costs should this be required. We look forward to hearing from you. The sample of patients chosen to receive this letter has been reviewed against our own records and the National Strategic Tracing Service, but please accept our sincere apologies if you feel that this letter has been sent to you at an inappropriate time. If you are unable to attend but would like to discuss your opinions informally, please feel free to call us on [INSERT NUMBER] or e-mail [INSERT E-MAIL ADDRESS]. Yours sincerely
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Appendix 2: Introduction presentation
‘‘Your Past is Our FutureYour Past is Our Future’’
Cardiac RehabilitationCardiac Rehabilitation
November 13November 13thth 20092009
Alan Darby – Exercise Physiologist
Nicola Chiffins – Nurse Specialist
Catherine Hames – Dietitian
Housekeeping
• Toilets
• In the event of a fire
- Assembly point ATC main entrance
• Illness
• Food
• Parking tickets
• Questions / concerns / issues
Why are you here?
• Foundation Of Nursing Studies (FONS) grant
• Further develop Cardiac Rehabilitation Service
• Provide a mechanism for you to feedback on your
experiences.
How are we going to gather information?
• Focus groups – Patient-centred
• Quiz (with prizes)
• General comments / feedback: one year on
Today's agenda
13.00 – Introduction and housekeeping
13.15 – Lunch
13.45 – Groups 1, 2 & 3: Focus groups
– Groups 4 & 5: View information stands with
time to complete quiz
14.30 – Groups 4 & 5 – Focus groups
– Groups 1, 2 & 3: View information stands with
time to complete quiz
15.15 – 15.30 – Summary of the day and prize giving
How will we use this information?
• Potential changes to future service
• Aiming for publication
• All attendees will receive feedback of the day’s
outcomes in due course
Thank you for taking part.
Your feedback makes a big
difference!
“Your past is our future”
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Appendix 3: Time line of day Foundation of Nursing Studies “Your Past is our Future” Focus group planning
• Invited 200 Patients
• 54 people confirmed Relative: 13 (1 group)
• Patients: 42 (divided 4 groups)
• Group structure – separate patients and relatives. All relatives in the same group. 6 groups in total.
• Group structure: 3 groups of 9 patients, 1 groups of 10 patients and 1 group of 13 relatives.
• Stickers will be allocated on arrival to ensure that people who arrive first are first into the focus groups.
(Communications team restricted relatives due to limited places – unknown to FONS Team) Meet with facilitators:
- Provide facilitators with background information of cardiac rehabilitation - Plan of the day - Facilitating sessions discussed
Morning preparation: 11.00am
– Prepare Room Tables ( NC, CH, AD) Porters – Room bookings to bring 4 blue boards for display. – Stands, flip charts x4 pens ( provided by M.Last, J.Down) – Posters for directions (CH) – Posters around room (Patient stories, Activity, Cholesterol, Diet, heart) CH, NC, AD – Food collect & Tea/coffee (Provide own) – Prepare labels for patients and groups 1,2,3,4,5,6, (as above) – Sign in List (AD) – Prepare projector system layout of all rooms (laptop - CH) – Community health representatives arrive to prepare their stands – Smoking cessation lady
arriving at main entrance at 11.50am) – Briefing for those manning stands on arrival following introduction.
11.15 Susan to collect food from Sainsbury’s 12.30 Patient Arrival: (welcomed by Susan Platt and Nicola Croxon)
- Sign Registration list - Issue labels - patients allocated to equal groups 1-6 (relatives separate group) - Issue Goodie bags (including quiz and pen) - Invite patients to help themselves to refreshments - NC, CH, AD to circulate and welcome patients
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Room Layout: 1. Catherine and Nicola Croxon to set up focus group rooms in the Diabetes centre. Room layout:
• Room 6A 6B divide open; See room plan.
• Food covered up while completing introduction
• stalls in corner of room
• coffee/tea – to be laid out 2nd room Level 2 Diabetes Wolfston centre
• Divided into two sections
• Can’t get in to room until 13.00 as diabetes service meeting 12-13.00. CH to go down with NC to rearrange room and prepare for focus groups at 13.00.
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Appendix 4: Notes from focus groups
1a) what impact, if any, has cardiac rehabilitation had on your life?
• Professional support
• Help point me in the right direction
• It has given me focus and pointed the way for me to progress
• Groups invaluable
• A re-assurance and support facility where people are all in the same boat and understand what you are feeling, and help you through difficult emotions and situations
• Not just exercise but support
• Made us feel at ease/ aided recovery.
• Helped to reflect on lifestyle support from other patients - “not just me alone”
• Exercise as group is important o able to talk to others in group o bonding o psychological o support
• It regulates (at least weekly) a full work out by having Sue and the whole group exercising every part of the body. Jogging and walking is good but does not do the whole job.
• I don’t think I would have got back to a normal life without it
• Gave us discipline to do exercise
• Enabled me to go back to work
• It has improved my recovery and given me awareness
• Monitoring by nurses reassuring – a chance to talk about this.
• Counseling – e.g. smoking cessation
• “Enormous impact” – didn’t know what to expect of MI, it was a fantastic support and guidance Diet
• Made my wife more concerned about my diet
• I eat more healthily
• Diet change very important o dietitian o speaking to others o learning what’s good/ ok to eat
Psychological Support
• Psychological impact shock and shock - re-assurance to realise what can do
• Removed anxiety
• Getting back into normal life – confidence
• Positive thinking
• Made me think more about what I was doing ‘look on life differently’
• Made me feel more alive
• Stress lecture very interesting. Don’t remember stress lecture – Not everyone invited
• Live life to the full
Physical
• Help re-establish exercise programme – impetus
• Exercises
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o sometimes make physical problems with exercise difficult o but reasonable adjustments made by nurses helped
• Drawn my attention to the benefit of exercise programmes
• Trying to keep fit
• Take more exercise
• I do things more slowly
• Rehab exercises = good discipline
• 200% better before � after. Carried on at home. Alternative would have been good
• Now go to other exercise class in community – helps me do it Phase 4 Long term
• Important o A number can not go because of transport problems o Or choose not to o Encouraged to join other groups
• When rehab programme ends - Private programmes available at a cost (some places)
1b) What impact, if any has cardiac rehabilitation had on your family’s life? Reassurance
• My family have been re-assured by the external support I receive
• Re-assured them of my recovery
• Re-assured by rehab – type of insurance
• Helped to re-assure my family that my condition is stable and that there are people o accessible to consider my and their questions as and when they arise
• I think that it made them feel more at ease
• Enabled them to support my recovery
• Very important that relatives are involved in rehab – to put them at ease
Change over time
• Lifestyle – normalises in time
• Family worrying o diminishes in time o get used to o way of life o more worry than family not directly involved in rehab
• Initially fear and worry, then relief and consideration
• Family watched CD/ read information given – very helpful. Helped overcome shock/ disbelief ‘indestructible father figure’.
• Family/ relatives very wary
• Rehab helped to dispel the shock for relatives/ family – helped to act logically/ in control Negative Anxiety
• My son and daughter keep saying “don’t do this and that”
• Relatives not ‘in control’ in same way as patient – they are sometimes more worried
• The wife seems to ‘fuss’ a little more
• My husband works more than me
• The lasting after effect is a ‘lingering fear’ (unspoken sometimes) – always there, and left uncontrolled could cause another event. Would psychotherapy help?
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• Waking at night – tachycardia – fear (unspoken)
Education Positive lifestyle or risk factor effects
• Family eats healthier – improvement in diet
• Created an awareness of healthy eating and exercise
• Watching that we eat more than we did
• Reading feed packets more
• Watch diet more – more fish
• Lifestyle o Healthy eating o Swap notes
• Made my wife more concerned about my diet
• Sharpened up approach to food
• They are always concerned and thinking of ways to help
• Patient sought out counseling to help accept/ understand what’s happened. Counselors could have focused on emotional side more – to help the relatives
• Brought me closer to my daughter
• Daughters “over the moon” I‘m exercising more
2a) Looking back, if you were to go through this experience again what could have helped you further?
Nothing
• I found the staff and the help brilliant and can’t think how it can be improved
• Nothing
• The treatment and advice was, I feel very comprehensive
• None really, as I have kept very well
• Did all they could
Group Sessions
• Maybe speaking to someone in the early past who had a similar experience and had managed to get back to normal
• Open discussions – only at the beginning of Phase 3 sessions (structured)
• Forum to share notes with other patients o ? towards the end of rehab o effects of drugs etc o share pool of knowledge o what does angina feel like
• Open discussion sessions with others in same position to build shared knowledge o thorough those experiencing the condition
Exercise
• Briefings gave sight into condition. Physical issues sometimes preventing rehab exercise – or interfering. Struggled with exercise ‘boot camp’ – not one size fits all
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• Extra session would be valuable to discuss progress. To discuss transition after Phase 3 to Phase 4 or not
• Short one to one sessions with physio to calibrate progress more often
• Before by-pass unaware of safe exercise limits Support counseling
• Much more guidance on psychiatric issues
• Not a lot, rehab covered all my needs. Felt vulnerable between heart attack and operation
• Perhaps a greater understanding of good days and bad days and how to cope with the emotional ups and downs
• I was very fit for my age, then MI – got a lot of lectures/ phase 1, need facility to give more detailed picture of the psychological impact of MI, e.g. like guidance
• Unexpected
• Little uncomfortable feeling, but I knew why, what it was
Information
• Knowing what a heart attack is o not always traditional symptoms o more public awareness of symptoms o early detection
• Going back to work � could be applied more widely to other parents/ people
• After first MI, to know the first symptoms could help identify problems earlier on o What information is out there? o Unpredictability of future MI’s o Clot –busting drugs – how long to continue them and what dose – ‘our life in their hands’
• Phase IV – no advice/ guidelines on taking exercise further
• What were/ are the symptoms of a heart attack? Education – run by nurses
• More information on medication
• More information how the weather affects you
• More general knowledge – I was unaware that I was having a heart attack
• Finding out how you couldn’t have grapefruit with statins o Not told, just ‘stumbled across it’ o Need to be made more aware of this and other side affects of this and other side o affects o More information generally about statins to help see if they are causing side effects o or if side affects caused by something else o The affects of statins causing bad dreams – is that normal (need to check with nurses)
• Pre-information – tests (exercise intolerance) – diagnosis of angina confusion between professionals – didn’t take much notice of chest pain when heart attack came
Update sessions
• 12 month update to review medicines/ information available from experts rather than newspapers
• Nice if once a year could be ‘wired up’ for health check whilst exercising
• Opportunity to discuss exercise after Phase 3 o review in 6 months o would like to know boundaries
Random
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• Had MI in A&E – good place to be
• Not having it!
• Knowing my dad died of a blocked artery 42 years ago, I should have realised o I should have cut down on naughty food
• Got into it sooner. Long wait for referral – gap of February-April
• I thought that this was a well thought system, so I think I received all the help I needed
• Positive experience overall, but as I had the heart attack abroad there were some administrative delays on having treatment in the UK
• Timing of information giving could be better
• Knowing what statin suits you best and is complicated. Changing statin can be difficult
• Advertising about heart attacks (like the stroke advert)
2b) Do you have any ideas for how the service can be improved? Pre-surgical information and support
• First visit by rehab team to patient in hospital
• Advice what to do and what not to do pre operation
Long Term follow up
• Being able to return to the rehab session for a consultation if required
• Follow up would have been good, 12 months after finishing rehab to have a review and a chance to ask questions
Psychiatric Support
• Much more guidance on psychiatric issues
• Individual time for discussion
Further Exercise detail
• For some getting fit through Phase 3, leaves further fitness gains uncontrolled - Phase 4 could build on mets received in Phase 3 and set margins/ limits on Phase 4 exercise. No further Improvement
• I have found the service to be excellent and the staff to be both professional and human. Sometimes the human support is the greatest healer
• The service to me has been good
• Phase 4 = excellent
• Sorry, no idea
• Really good service.
• From my own experience I found it excellent
• No need for improvement
• Splendid
• Support Wonderful
• Nurses were absolutely great
Support from Other Patients
• Channelling of information to people at beginning of their path
• Perhaps former patients go along to Phase 3 session to talk
• If suffering from other problems/ conditions, how to accommodate them – Point of contact
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• More information to how my wife was feeling. I was treated well, but felt she was a little neglected
• More involvement of partners
• Good that Papworth come here so that patients get less delay
• Don’t know what is ‘happening’, what about what’s happening that can’t be seen? So more monitoring/ tests afterwards, not just BP and blood test but also treadmill with measuring/ physical assessment – better than waiting for pain symptoms
Support Minority groups
• Services should be planned around for minority groups e.g. women. (This was countered – service should be adaptive to special needs)
• Minority groups could feel isolated within wider patient group – I’d go and see my GP
• Difficult to contribute if not in majority Information
• Is there a CD/ DVD of exercises? There is a leaflet
• After 1st MI, I carried on as normal. Different for 2nd and 3rd, learnt a lot. Had rebab for each one, learnt I should have done things differently after 1st � Recognising what’s normal and what’s not – getting help quicker
• Exercises in relation to weight: could be better explained, for patients who may have problems
• More information where exercise is available outside of Cambridge
• None offered appointment to meet others (patient’s)
• Follow up contact line
• Continuing in current best practice exercise etc - Web page - group
• Always worry in back of mind
• Heart attack can be a good “warning shot”
• Heart disease caused by problems with vessels
• Confusion between heart attacks and strokes
• 1/3 of people who have heart attacks die – did not know this before
• Information leaflets useful, majority left before them!
• After 1st MI, to know the 1st critical symptoms – could help identify problems earlier on.
• What info is out there
• Predictability of future MI’s
• Fat busting drugs – how long to continue them and what dose
• Side effects of medication explained (more explanation needed)
• Info on “going back to work” � could be applied more widely to other patient’s/ people
• The knowledge gained from the first time I hope would help if it should happen again
• Other comments
• Wasn’t aware of service until I was discharged from hospital – would be good to know about rehab straight away – Gap between hospital and home. Got home, did not know what to do/ what was going on. Chance to ask questions in that period
• I had MI at 86, now 90, married to retired GP. In her day less rehab, so now different approach. Was fit before, that helped sustain my health
• Good Papworth coming here so that patient’s get a stent quicker – less delay
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Appendix 5.
Questionnaire We would be grateful if you could complete this quiz. We realize that there are a large number of questions, so we have put together 3 Christmas hampers as prizes for three lucky winners. You do not even need to get the answers correct – just make sure you put your name on top to
be entered into the draw. Name: ________________________ Diet section
1. How many portions of fruits and vegetables should you aim to eat each day? _____________ How many portions of fruits and vegetables do you eat per day? _____________ 2. How many portions of oily fish are recommended for you to eat per week after
having a heart attack? ____________ How portions do you eat per week? _________________________ 3. Can you name 2 types of oily fish? ____________________________________________________ 4. Which foods are high in saturated fat? Please circle: - Pastry foods - bread - crisps - sunflower spread - potatoes - eggs - cheese - butter
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4. It is better to use rock salt instead of table salt? (circle answer) True False 5. Give 2 examples of an alcoholic drink that would make up 1unit of alcohol? E.g. x amount wine would equal 1 unit of alcohol _______________________________________________ How many units of alcohol do you drink in a week? __________________________ Activity section
(please circle the correct answers to the questions below) 1) On how many days per week should one exercise to maintain good health?
a) Once b) Three – Five times c) Every day
How often do you exercise? ____________
2) Which of the following is the optimal exercise intensity required to achieve Cardiovascular benefit?
a) Extremely light – Light b) Light – Somewhat hard c) Hard – Extremely Hard
At what intensity do you undertake your exercises? _______________
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3) In order to maintain venous return during and immediately after exercise, it is
important to:
a) Maintain arm movements b) Maintain leg movements c) Lay down
4) Ideally, how long should you warm-up for, prior to undertaking a 30min,
moderate intensity, bout of exercise?
a) 5min b) 10min c) 15min
How long do you warm-up for? _____________ 5) Which of the following statements are true?
a) Blood pressure can remain reduced for up to 12 hours after exercise i) True ii) False
b) In order to benefit from exercise, you should exercise to a hard intensity. i) True ii) False
c) Cholesterol levels can be reduced by regular exercise i) True ii) False
d) Abdominal girth can reduce with exercise even if weight stays the same
i) True ii) False
e) Exercise can help to reduce levels of anxiety and depression i) True ii) False
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Nursing section
1. Are you still taking your cardiac medications as prescribed by your GP? Circle answer.
• YES
• NO
2. Have you had your medications altered or changed since your discharge from cardiac rehabilitation?
• Yes
• No
3. Have you received a follow up from your GP/ practice nurse since your discharge from Cardiac Rehabilitation?
• Yes
• No If yes: When /how often ____________________________________
4. Have you needed to go back to the GP with regards to cardiac related problems?
• Yes
• No If yes please state reason: ___________________________________________
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5. Please ring the risk factors that you are aware off that contribute to Coronary heart disease:
Smoking High Cholesterol Poor diet
Stress Physical inactivity Gambling
Diabetes Extreme sports Age
Swimming Gender Family history
Alcohol Obesity Caffeine
High blood pressure
6. Can you personally identify a risk factor that you have addressed over the
past year?
7. Are there any modifiable risk factors that you have not been able to
address or have struggled with? _________________________________________________ If yes please state the risk factor: 8. Have you had any further re admissions into hospital since your discharge
from cardiac rehabilitation in relation to your heart? If yes please state dates of admissions: ____________________________________________________________________________________________________________________________________________________________________________________________________________________ Any other comments: _______________________________________________________________________________________________________________________________________________________________ Please place the questionnaire in the marked box or give to one of the organisers to be in with a chance of winning one of three healthy Christmas hampers. The prize is not based on correct answers but just completing the quiz!!
GOOD LUCK! Thank you for your time!
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Appendix 6: Letter from a patient’s daughter