What three aspects of patient centred care need improving for cardiovascular patients?
Who does cardiovascular disease affect?
It is estimated that there are currently 7 million people living with cardiovascular disease (CVD) in the UK. Of these, around 2.2 million people live with coronary heart disease, 1 million people are affected by stroke and 600,000 live with an inherited condition.
The challenges of living with CVD
Receiving a diagnosis of CVD or living with risk factors can have an impact on various areas of an individual’s life. Specific challenges faced by patients with CVD and their carers vary according to the type and stage of the disease, and the demographic profile of the individual.
In our research*, commissioned by the British Heart Foundation (BHF), the issues respondents described in interviews and focus groups fell into several broad categories relating to: overall quality of life, accessing care, physical and psychosocial needs.
The five most common challenges highlighted in the survey were:
1. Feeling down, sad or depressed
2. Making changes to the way or amount they exercised
3. Anxiety, fear, or uncertainty about the future
4. Having a single point of contact for discussing all aspects of their condition, treatment, and care
5. Being given information on the side effects of the medications
What aspects of care would patients like to see improved?
In relation to these challenges, respondents discussed the approaches they use to help manage their condition, and aspects of their care they would like to see carried out differently. These included:
1) Information provision and clarity of advice
People with CVD reported a lack of awareness of available information resources; including details of local support groups and resources for self-care and management. They highlighted a lack of information relating to their medication’s side effects, how to manage their condition at home, or what to expect after procedures.
“I have constant arguments with my doctor about coming off my statins. They don’t tell you about the side effects. They don’t tell you about the risk of diabetes. You suddenly get a letter to say that you’ve got to watch because you might be susceptible to diabetes. Where the hell did that come from?”
CVD patients wanted information about which resources are appropriate and accurate from reputable sources, such as healthcare professionals or well-known organisations. The additional resources they mentioned wanting from the BHF were:
- The publication of more self-help resources
- Information on how they can get the most out of appointments
- Additional support around accessing and eligibility for benefits.
CVD patients talked about a lack of support in a range of care settings and at different points in their treatment. Patients found a difference between intensive care and care on a ‘normal ward’. On the wards, they were given their medications and basic advice, but there was less help with managing their pain.
In terms of psychological support, patients wanted better access to mental health support:
“Following triple coronary artery bypass graft I went through a period of anger, depression, etc much like PTSD. Access to counselling was very slow with a long waiting list.”
On discharge from hospital, patients felt they were given insufficient support with home visits to aid them while they recovered, and information to help them adjust their lifestyles.
3) Non-medical resources
The two key resources people had found useful included rehabilitation programmes and information to help manage their diet. However, people were understandably nervous about taking up exercise with a heart condition and wanted clear advice:
“I have had no advice whatsoever. My condition is precarious. I would like to know what I can and cannot do where exercise is concerned.” (Risk factor, online)
There were several key areas for improvement highlighted concerning exercise: having better access to facilities, more support, and more advice about the type and amount of exercise that would be suitable.
What do we need to change?
Patients wanted more individualised programmes of care based on the type and severity of their CVD. Many wanted to follow healthcare advice on medication, exercise, and diet but felt they did not have the appropriate support to do so.
Giving patients greater continuity of care, with a single healthcare professional guiding them through their rehabilitation, would make patients feel more confident about adjusting their lifestyles to aid their recovery. It would give them control over their condition and reduce levels of anxiety leading to shorter recovery times and increased quality of life.
*What was the research?
The British Heart Foundation commissioned Picker to conduct research into the significant issues faced by people living with the main types of cardiovascular disease (CVD). The aim of the study was to understand the needs of CVD patients and their carers and inform the strategic direction of the BHF.
A mixed-methods study was used to investigate the challenges faced by people living with CVD, their carers and family members, and people living with risk factors of CVD. We conducted the study between June and September 2018.
This blog was written by Alan Poots on behalf of the research team: AJ Poots, S-A Burger, S Kaesbauer, H Thorne and A Perris