Developing rehabilitation for people with heart failure Evolving services in Newcastle upon Tyne Christine Baker

In the beginning…. Increasing prevalence of heart failure Increasing prevalence of heart failure People with heart failure are frequently admitted to hospital People with heart failure are frequently admitted to hospital Heart failure is linked with poor prognosis and significant impact on everyday life. Heart failure is linked with poor prognosis and significant impact on everyday life. Growing evidence base: Growing evidence base: Exercise is safe and beneficial for people with heart failure Exercise is safe and beneficial for people with heart failure NSF for CHD lists cardiac rehabilitation, risk factor advice, physical activity and psychosocial interventions as key interventions for people with heart failure NSF for CHD lists cardiac rehabilitation, risk factor advice, physical activity and psychosocial interventions as key interventions for people with heart failure

Figure 1 Hazard ratios and 95% confidence intervals for the individual studies for the effect of exercise training on risk of death. (ExTraMatch collaborative, BMJ, 2004)

In Newcastle upon Tyne: In 2003 there was no rehabilitation service for people with heart failure In 2003 there was no rehabilitation service for people with heart failure A group was set up to address heart failure in the acute hospitals trust – supported piloting a specific programme A group was set up to address heart failure in the acute hospitals trust – supported piloting a specific programme We had available resources within the acute Hospitals Trust We had available resources within the acute Hospitals Trust A rehabilitation facility A rehabilitation facility An experienced multi-disciplinary team An experienced multi-disciplinary team

RVI rehab team Cardiac rehabilitation nurse Cardiac rehabilitation nurse Physiotherapist and physiotherapy support Physiotherapist and physiotherapy support Occupational therapist Occupational therapist Pharmacist, cardiologist, psychologist, dietician providing flexible input Pharmacist, cardiologist, psychologist, dietician providing flexible input Administration support Administration support

An evolving model – service user views 1. Information needs Individually relevant information Individually relevant information Facts about heart failure Facts about heart failure Coping with heart failure Coping with heart failure Lifestyle change Lifestyle change Dealing with others Dealing with others Practical advice Practical advice Process: involve family members written information group discussion (not talks) share information

2. Physical activity Goal – to increase stamina and improve tolerance for exercise so not so tired Goal – to increase stamina and improve tolerance for exercise so not so tired Need for individualised exercise Need for individualised exercise Home exercise plan Home exercise plan Something to do daily Something to do daily Group to provide support Group to provide support 3. Relaxation 4. Time for peer support

Programme model Condition (Heart failure) and evidence-based Condition (Heart failure) and evidence-based To help participants develop knowledge, skills and confidence to improve and sustain achievable health and functional activity. To help participants develop knowledge, skills and confidence to improve and sustain achievable health and functional activity. 16 weekly sessions (2 hours) 16 weekly sessions (2 hours) Up to 12 participants, partners invited Up to 12 participants, partners invited Collaborative: participants actively involved in planning programme, goal setting and monitoring progress Collaborative: participants actively involved in planning programme, goal setting and monitoring progress

Individual reviews Individual reviews A facilitated, personally set home-based exercise programme, developed and practiced at rehab. A facilitated, personally set home-based exercise programme, developed and practiced at rehab. Activity plan and home diary to record and monitor activity Activity plan and home diary to record and monitor activity Relaxation approaches demonstrated Relaxation approaches demonstrated Programme of discussion topics Programme of discussion topics

Discussion topics Understanding heart failure Understanding heart failure Taking control of symptoms Taking control of symptoms Adjusting and coping Adjusting and coping Managing at home Managing at home Medication Medication Approaches to food and eating Approaches to food and eating Exercise – what can I do Exercise – what can I do Social support and community resources Social support and community resources

Participants: recruitment and inclusion criteria Potential participants identified by cardiologist or ward sister Potential participants identified by cardiologist or ward sister NYHA class 2 or 3 NYHA class 2 or 3 LV systolic dysfunction underlies heart failure LV systolic dysfunction underlies heart failure Stable for 4 weeks Stable for 4 weeks Angina no worse than CCS 3, and been assessed Angina no worse than CCS 3, and been assessed Reviewed in cardiology clinic Reviewed in cardiology clinic People with devices can be included People with devices can be included

Exclusion criteria NYHA class 4 NYHA class 4 Severe angina/ischemia Severe angina/ischemia Uncontrolled heart failure, worsening symptoms Uncontrolled heart failure, worsening symptoms Change in treatment due to worsening condition Change in treatment due to worsening condition BP < 90 mmHg systolic, or < 100 if associated dizziness BP < 90 mmHg systolic, or < 100 if associated dizziness Resting heart rate>100 beats/min Resting heart rate>100 beats/min Uncontrolled arrhythmias Uncontrolled arrhythmias Febrile illness Febrile illness Cardiologist considers unsuitable Cardiologist considers unsuitable

Evaluation The participants The participants 4 men, 3 women 4 men, 3 women Aged 43 – 79 years Aged 43 – 79 years Class 3-4: 4 – Left ventricular systolic dysfunction, Class 3-4: 4 – Left ventricular systolic dysfunction, 2 – cardiomyopathy Ejection fraction 20 – 72% Ejection fraction 20 – 72% Co-morbidity: Co-morbidity: History of CHD (5), renal impairment (3), asthma (2), diabetes(2), Hyperthyroidism (2), Obesity (3), Peripheral vascular disease(1) Attendance 2 did not engage in group 2 died in course of programme 3 regularly attended whole programme Family members attended

  Relevant past medical history (NYHA class, cause of heart failure, ejection fraction, exercise tolerance test   Medication   Weight   Orthopnoea (numbers of pillows to sleep)   Nocturnal dyspnoea   Leg fatigue   Occupational therapy functional assessment  Shuttle walk test  Hospital Anxiety and Depression Scales  Minnesota Living with Heart Failure Questionnaire  Personal goals  Any recent worsening of symptoms (ankle swelling, fatigue, dizziness, shortness of breath, sleep problems)  Resting blood pressure, heart rate, SaO 2, respiratory rate

Goal achievement Common goals: To improve confidence To improve confidence To understand condition To understand condition To increase energy levels To increase energy levels To learn what I can do and how far to go To learn what I can do and how far to go To take up a specific activity To take up a specific activity To have a practical need met To have a practical need met Participants reported a good degree of goal attainment

Participant feedback Semi-structured interview Altogether positive Altogether positive Constructive: Constructive: Programme offered at diagnosis Programme offered at diagnosis Opportunity to attend at intervals in future Opportunity to attend at intervals in future Issue of prognosis, palliative care and deaths Issue of prognosis, palliative care and deaths Issue of maintenance Issue of maintenance Issue of support for family members Issue of support for family members

Staff feedback Referrals –too few– Class 3 and 4: address referral Referrals –too few– Class 3 and 4: address referral Collaborative approach -individual goal setting - home-based programme– worked well Collaborative approach -individual goal setting - home-based programme– worked well Develop rolling programme and flexible intervals for participants – address maintenance/community links Develop rolling programme and flexible intervals for participants – address maintenance/community links Develop written information Develop written information Evaluation – Formal and sessional evaluation OK - capture self-efficacy Evaluation – Formal and sessional evaluation OK - capture self-efficacy Confidence and experience of staff has developed Confidence and experience of staff has developed

Next steps Further developing as a rolling programme Further developing as a rolling programme Cardiologists and BHF heart failure nurses involved in recruitment Cardiologists and BHF heart failure nurses involved in recruitment Evolving links with community services re. maintenance Evolving links with community services re. maintenance Continuing to evaluate Continuing to evaluate

Taking control of Heart Failure A community development project

Based in inner west of Newcastle-upon Tyne Based in inner west of Newcastle-upon Tyne Supported by grant from Health Action Zone: partnership funding for preventative programmes Supported by grant from Health Action Zone: partnership funding for preventative programmes Partnership of community and health (PCT) providers Partnership of community and health (PCT) providers

Taking control of heart failure Model Based on community development methods and principals. Innovation-based. Based on community development methods and principals. Innovation-based. Objective: to empower people to take more control of their lives – to add value Objective: to empower people to take more control of their lives – to add value Fundamentally a quality of life programme, not a disease based programme Fundamentally a quality of life programme, not a disease based programme Participants determine programme structure and outcome evaluation (no physiological measures) Participants determine programme structure and outcome evaluation (no physiological measures)

Taking control of heart failure Process 2 BHF funded HF nurses working with GPs and practice nurse IHD leads from 2 practices 2 BHF funded HF nurses working with GPs and practice nurse IHD leads from 2 practices 32 people with class 2 heart failure identified 32 people with class 2 heart failure identified Written invitation to participate – follow-up telephone call Written invitation to participate – follow-up telephone call BHF nurses visiting willing people at home to meet, provide information and discuss group. BHF nurses visiting willing people at home to meet, provide information and discuss group. Invitation to group. Invitation to group.

Taking control of Heart Failure Programme 2 closed groups 2 closed groups Ten weekly sessions Ten weekly sessions Facilitated by community development worker with experience in such projects and group facilitation Facilitated by community development worker with experience in such projects and group facilitation Content directed by group Content directed by group Potential involvement of local cardiac rehab team – pharmacist, psychologist, exercise specialists, nutritionist Potential involvement of local cardiac rehab team – pharmacist, psychologist, exercise specialists, nutritionist

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