This post is written by Alice Burnand (Research Assistant, Department of Clinical and Movement Neurosciences)

Self-management approaches have been developed and tested to give insight into their effectiveness and which population group may benefit. So far, research has received mixed results on the impact that self-management can have on complex health conditions outcome measures, such as wellbeing, function, quality of life, and caregiver wellbeing. Further high-quality research needs to be conducted. The PD-Care randomised control trial (RCT) is currently testing a self-management toolkit which aims to improve the care of people with Parkinson’s Disease (PD), who are living at home.  Here, I will discuss the use of digital technologies and self-management tools and how they support individuals with complex health conditions, detailing PD-Care as an example.

Rise in use of digital technology after the COVID-19 pandemic

Services, relationships and healthcare all depended on online communication to work through the COVID-19 pandemic. This resulted in a vast acceleration in the use of digital technologies, such as social media and telemedicine, to abide by social distance regulations whilst maintaining communication across the world.

COVID-19 also resulted in considerable strain on service delivery across the NHS in the UK, causing a significant backlog in elective care.  Six million people are now on the waiting list to be seen, up from 4.4 million pre-pandemic. Unfortunately, the impact of waiting longer for treatment and medical advice is wide ranging, from worsening outcomes for patients, to increasing pressure and strain on NHS staff, evidenced by the latest nursing strikes. This burden is exacerbated by the rise in the ageing population and increased life expectancy. Although we are living longer, we are not necessarily living healthier, as the emphasis has changed from managing infectious diseases to supporting complex health conditions, with over 50% of clinical appointments and 70% of hospital bed resources currently used due to complex care needs.

How do we support people with complex health conditions?

Clinician appointments for complex health needs are important for supporting with debilitating symptoms. They offer person-centred medical advice and treatments for the specificities complex conditions bring. Due to rising demand, lack of resources, and backlog from the COVID-19 pandemic, reviews with specialists tend to be infrequent. Patients are often left feeling isolated and alone, particularly in the months following a new diagnosis.

Self-management approaches offer a solution and toolkits such as the one used in the PD-Care study, emphasise the central role that individuals have in managing their health. Example approaches include learning new skills, patient education, and monitoring symptoms. Self-management tools increase autonomy and independence in managing patients’ complex conditions, guided by the latest research. In recent years, there has been increasing interest in these approaches for complex conditions. Evidence shows that self-management can improve functional outcomes and wellbeing, as well as decrease health care utilisation (see Panagioti et al, 2014).

The rise in use of digital technologies go hand-in-hand with the increase in use of self-management tools. The government is investing over £300 million in creating new online services and technologies to meet the needs of our ageing society and those with complex conditions, making healthcare support more readily accessible for those who need it. Self-management tools enable individuals to learn about their condition, understand treatments, and track symptoms which they can further discuss with their healthcare professional. It enables the individual to be more prepared for clinical reviews, for them to run more efficiently, and to have more control over their healthcare and treatment. Self-management also facilitate individuals to reach their own health-related goals that contribute to wellbeing and enhanced quality of life. Autonomy and independence are considered an integral component of wellbeing (Yu et al, 2018), and self-management approaches centralise this.

Autonomy in deciding what is most important to an individual when managing their complex health condition is crucial. The proliferation of treatment options for complex conditions can add demands and burden to the patient, and the treatment guidelines focus only on clinical outcomes, often ignoring patient capacity and motivation.  When there is an imbalance between patient capacity and treatment workload, patients are less likely to engage with healthcare professionals, or may ignore other important aspects of their lives. The term ‘minimally disruptive medicine’ (Abu Dabrh et al, 2015) refers to evidence-based, supportive care that fits into the patient’s capacity, prioritising goals that are important to the individual and focus on improving wellbeing.

Insights from the PD-Care Study

The RCT that the PD-Care team are conducting evaluates a self-management tool (digital and paper format) for individuals with Parkinson’s disease. The tool, titled ‘Live Well with Parkinson’s’, aims to increase independence, confidence, and well-being in those with a diagnosis, as well as their caregivers. The team have two ‘Living Well Facilitators’ who complete up to six sessions over six months via Zoom or telephone, to help participants understand and use the toolkit appropriately, with sections that enable them to educate themselves, track symptoms, medications, and activities, monitor progression, and work towards ‘wellbeing priorities’ that are specific and important to each individual. They can also share their toolkit with health care professionals, to improve communication and clarity when it comes to their clinical appointments. This follows guidance of minimally disruptive medicine and aims to improve autonomy and confidence in those with complex health conditions.

We are currently recruiting from both primary and secondary sites and are delivering the intervention to participants. If you would like to read more about the work we have done so far on the PD-Care study, please click here or contact Alice Burnand: a.burnand@ucl.ac.uk.