An Exploration of the Nurses’ Role in Improving Quality of Life (QoL) in Patients with Motor Neurone Disease (MND)

An exploration of the nurses’ role in improving quality of life (QoL) in patients with motor neurone disease (MND)

What is motor neurone disease and why is this a topical issue

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Harris et al (2018) describe motor neurone disease (MND) as a neurological disease of the central nervous system, with a quick and complex progression. This definition implies the brief window of opportunity that healthcare professionals have, to deliver the correct care.

Ramanathan and Rana (2018) report the average age of symptom onset as 58.6 years, their oldest case being 86 years. Hobson et al (2017) reported on a 17-year-old male with a nine-month history of swallowing difficulties, who died. This appears to suggest that age onset of MND is variable. Khadilkar et al (2018) propose the incidence of MND as 1.5-2/100,000 each year, this statistic is validated by the MND association.

A minority of cases of MND are familial, however most cases are sporadic in nature, (Talbot 2002, Khadilkar et al 2018). Burchardi et al (2005), although dated remains true, that MND can present in different ways, however the trajectory of the disease is predictable and usually terminal; with the majority of MND patients dying of respiratory related complications. The authors indicate that if symptoms begin in the patients’ limbs then this is termed ‘limb onset’ whereas if symptoms start with speech and swallowing difficulties, this is termed ‘bulbar onset’.

Harris et al (2018) propose that MND results in a patient having multiple complex needs. The general trajectory is to disrupt the motor neurons that connect the brain to the muscles of the body, this results in muscles weakness, spasticity and fasciculations. Over a period of time, the patient will lose ability to control the muscles in their body, leading to mobility issues, dysphagia, dysarthria, respiratory failure and eventually death.

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Morley et al (2018) propose that the prognosis in MND is three years, the progression is rapid and predictable, however there are exceptions. Albert et al (1999) found that over 50% of their follow up visits of MND patients died after one year. Possibly, Albert et al (1999) had a cohort of people with advanced disease anyway, however this demonstrates the dramatic and variable timeline of MND.

Dawson et al (2002) proposed that advances in technology mean that MND patients are living longer and therefore reliant on others for longer periods of time. Dawson’s dated observation is supported by Kiernan (2017) who discusses therapies in development targeted at MND, for example, physiotherapy, massage and meditation. In a resource-led climate, at this time, this may imply future challenges for health professionals when supporting patients with MND.

As mentioned above, MND is a somewhat predictable disease, however with modern advances there is a shift in attitude from one of nihilism to one of optimism and patients are surviving longer. MND patients will be dependent on others for an extended period of time as their bodies fail. For this reason, planning for this eventuality is a topical health issue which must be addressed in order to avoid crisis-led decision management. This review aims to explore the nurses’ role in improving QoL in MND patients.

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What is the concept of quality of life and why is it important?

Marcia and Simonson (1996) describe how in 1948 The World Health Organisation (WHO) defined health as not only physical, but also psychological and spiritual. In 1973 a database search of Medline showed five articles with quality of life (QoL) as a keyword, this then grew exponentially in the subsequent five years to 1252; demonstrating the growing interest in the concept.

Cella (1993) supports the theory that after many years of being considered less important than physical health, that QoL is now considered more seriously. She proposes that rather than the absolute traditional goal of symptom management, that a patient’s QoL is starting to take a front seat in treatment goals.

In relation to MND, QoL now appears to be emerging as good practice as proposed by Harris et al (2018). The authors purport that MND management should focus around QoL, however, to date, more importance has been placed on the physical side of treatment.

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Leigh et al (2003) expand on this and note that a lot of progress has been made between 1990-2000 in the field of MND, and there has been an attitude shift from one of nihilism to one of optimism. In 2005, the National Service Framework for long term conditions was released and this brought about a change in the concept of caring for people with long term conditions.

Simmons et al (2000) conducted a study that discovered MND patient’s did not measure their QoL by their physical weakening but rather their psychological and existential factors. Simmons is supported by Goldstein (2002) who proposes that QoL in MND patients should not be entirely based on physical ability and should take into account their support systems.

Oberstadt et al (2018) support both Simmons and Goldtein, and propose that a person diagnosed with MND will most probably experience a vast array of emotions including hopelessness and despair, and therefore interventions to supports psychological wellbeing are essential.

Arguably a person’s QoL is subjective, because it is a lived experience that no other person will experience in the same way; a person may find contentment in spiritual aspects as opposed to physical aspects. Skevington and Bohnke (2018) propose a definition of a persons’ subjective wellbeing and quality of life as concepts describing experiences, capacities, states and behaviours.

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A person’s experience of MND is somewhat predictable due to the nature and trajectory of the disease, therefore it could be argued that a person’s QoL in MND maybe predictable to an extent.

Harris et al (2018) propose that current research in the field of QoL in MND places emphasis on wellbeing issues of the patient and their carers’. Harris et al (2018)’s observation suggests that research is person centred as it seems to place the patient at the centre of their care, and address issues of relevance for the patient on an individual basis, as well as holistic in approach because it addresses broader issues than the physical aspects.

Arguably this shift from medicalised treatment to  more person centred and individualised treatment is an example of the social model of care.

Synthesis indicates that QoL appears to be important in relation to MND management in recent years and this should be taken into consideration in the management plan of patients, as MND patients live longer. This review will explore the role of the nurse and how they may be ideally placed to improve QoL in MND patients.

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Review aim and design

The aim of this review is to discover how nurses can improve quality of life (QoL) for patients living with motor neurone disease (MND), as outlined above. This will be achieved by an integrative review process which refers to identification of relevant studies (quantitative and qualitative), analysis of the findings, followed by synthesis (Burns and Grove, 2010). The authors indicate that an integrative review process allows us to find the most relevant information. Burns and Grove argue that the value of the integrative review is underpinned by rigor of the methodical process.

Search method

Grewal et al (2016) proposes that databases are a key component to utilise to ensure relevant information is obtained. This marries with Bramer et al (2017) who encourages multiple databases to be used to ensure relevant data is obtained.

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A comprehensive literature search was conducted using electronic databases: CINAHL, Ovid, Science Direct and Internurse. The database search was conducted using keywords which narrowed down the results, these included: Motor Neuron Disease OR MND, Advance care plan OR ACP, nurs*, quality of life OR QOL. See table 1.1 below.

The table below shows the databases accessed and the final number of papers included from each database.

The table below contains the keywords and Boolean phrases that were used in this review.

After the databases were searched using the keywords and Boolean phrases a list of inclusion and exclusion criteria was applied. See table 1.2 below.

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