Treatment burden in people below the age of 65 with multimorbidity in primary care: A mixed methods study

One in two people over the age of 50 have more than one long term health condition (multimorbidity). The number of people living with multimorbidity is growing. Compared with people without multimorbidity, people with multimorbidity have worse quality of life, take more medicines, and are more likely to die or to be admitted to hospital. More
people in deprived areas develop multimorbidity at a younger age. As a group, people with multimorbidity have more contacts with healthcare services than people with one or no long-term conditions. Because of this the NHS and policy-makers want to find ways to manage multimorbidity better.
People with multimorbidity put a lot of effort to manage their medicines and healthcare appointments (treatment burden). There is some research that younger people experience more treatment burden. Previous research tells us that sometimes it is the simple things like getting appointments with the GP and finding parking that cause the
most burden. Although people with multimorbidity are often grouped together, their experience depends on the health conditions they have, their ethnicity, where they live and their level of income. People with multimorbidity who are working age might have different problems such as getting time off work for appointments, managing their health
conditions as work, or juggling childcare. This study will focus on people who are under the age of 65, as not much research has focused on them.
A recent report by a charity for people with multimorbidity said that not much research has been done on how it feels for people to live with multimorbidity. Also, we do not know the best way to support and treat people with multimorbidity in GP services. If we understand people’s experiences, we might be able to design better services to meet their needs.
There are some questionnaires that could be used to find people who be finding it difficult to cope with their multimorbidity burden, but they need more testing in the UK, particularly in younger people. Some questionnaires are too long, and it would be helpful to have a short version (e.g. just one question). This could be used regularly, as a quick way to identify people who might be ‘overburdened’ and need more support.
We want to find out how health care services can support people with multimorbidity and reduce their treatment burden. We will do this in three ways: 1) interviewing people with multimorbidity, 2) ask people to complete questionnaires and 3) hold a meeting with people with multimorbidity, GPs and people who organise GP services, to talk about what we have found and work together to make recommendations to improve care. Throughout the study, we will work with the staff and patients at the GP surgeries involved to increase the number of people who take part. We will make efforts to reach and include people from minority ethnic groups and those who have difficulties in accessing health care. We will work with local community groups to raise awareness about this study and translate study materials into different languages. People with multimorbidity who take part in each part of the study will receive a voucher to thank them for taking part.

In the first part of the study, we will ask GPs to find people with multimorbidity at their practice. We will invite some of those people to be interviewed, for up to 1 hour, either by phone, video or face to face. During the interview we will find out about their experience of living with multimorbidity, efforts they have to put into managing their health and
treatment burden, and ways in which using health care services help or make it more difficult. We will use what we find in this study to help design the questionnaire that we will use in the second part of the study.
In the second part of the study, we will ask GPs to invite randomly selected people from their practice. People who agree to take part will fill in questionnaires and give us permission to look at their medical notes. The questionnaires will ask about their experiences of care, how multimorbidity affects them, including the burden because of
their health conditions or from managing them. As part of this we will test how well a short measure, based on a very small number of questions or even a single question, works in identifying overburdened people.
In the third part of the study, we will hold a meeting with patients, people who organise healthcare services, and commissioners and healthcare professionals. During this meeting we will make sense of the results from interviews and questionnaires to identify how health services can support people with multimorbidity.
We will work together with people with multimorbidity or those with experience of caring for people with multimorbidity. The idea for this study came from a PPI group focused on multimorbidity research projects, with which both RJ and SC have been involved in for the past two years. We have set up a patient and public involvement (PPI) group including six people (two from minority ethnic groups). This group will be involved throughout the study from developing study materials to developing materials for sharing study findings.

Amount awarded: £345,496