This article explores the implications of caring for patients with Parkinson's in secondary care. The evidence base is explored within the article to establish key considerations for the role of the nurse and to highlight risks associated with improper administration of time-critical medications.
Background
Parkinson's was first described as the ‘shaking palsy’ and in the 1870s was named Parkinson's in honour of James Parkinson who was responsible for distinguishing Parkinson's from other diseases exhibiting similar symptoms (Goetz, 2011). According to the National Institute for Health and Care Excellence (NICE) (2017), there are no reliable tests that can distinguish Parkinson's from other diseases exhibiting similar symptoms, and its diagnosis is based upon clinical history and examination. Parkinson's is the second most common neurodegenerative disorder after Alzheimer's (Gerlach et al, 2011).
Dopamine is a chemical produced by neurons and is a type of neurotransmitter. The nervous system uses it to communicate between nerve cells to control movement, and it plays a role in the ability to think and plan (Cristol, 2021). Subsequently, the development of Parkinson's is related to the cell death of these neurons, causing a resting tremor, bradykinesia, rigidity, postural instability and swallowing difficulties (Ahlskog, 2009). Although Parkinson's is typically a slow progressive disorder, it does have a huge impact on patients' abilities and quality of life (Houghton et al, 2016). Currently, Parkinson's is regarded as idiopathic as its cause is unknown (Ahlskog, 2009). Donizak and McCabe (2017) highlighted that most people with Parkinson's first develop symptoms at around 60 years of age, suggesting that the disease primarily arises with increased age and longevity.
The most effective drug treatment for Parkinson's is levodopa, a dopaminergic medication, which is the first-line treatment according to NICE (2017). Levodopa is absorbed by the nerve cells in the brain and turned into dopamine (Ahlskog, 2009). Medications will not stop the progression of Parkinson's, but increasing levels of dopamine by using levodopa reduces symptoms, thus improving movement and reducing dysphagia (NHS website, 2022). Maintenance of Parkinson's motor control symptoms often requires careful titration of dopaminergic drugs and adjustments of administration schedules depending on how the patient responds to dopaminergic medication (Grissinger, 2018). If patients with Parkinson's do not receive their dopaminergic medication on time, it can have adverse health implications, impacting on patients' activities of daily living and even mortality (NICE; 2018; Parkinson's UK, 2020).
Prevalence
Parkinson's UK has stated that there are approximately 137 000 people living with the disorder in the UK (Parkinson's UK, 2017) and each year there are about 17 300 new diagnoses of Parkinson's (Parkinson's UK, 2017). NICE (2022) supports Donizak and McCabe's (2017) theory that Parkinson's arises with age and has speculated that, by 2025, due to the UK's ageing population, the prevalence of Parkinson's in the UK will increase by 23%. There are, however, a small number of people under 60 years old diagnosed with the disorder, according to Parkinson's UK (2018) so, arguably, these figures may be underestimated, as it is thought that health professionals are less likely to suspect Parkinson's in younger people and may take longer to diagnose their condition. Furthermore, Parkinson's UK (2018) has suggested that the disorder can be undiagnosed in the older population too, because symptoms can be attributed to the ‘normal ageing’ process or comorbidities can make diagnosis difficult.
Economic impact
Parkinson's has a significant financial and social impact on patients, their families and the NHS, with nearly 28% of patients admitted to hospital with a higher rate of potential complications than those in a similar age group without Parkinson's (NICE, 2022). Contributing factors are associated with dopaminergic medication administration errors due to regimen complexity, delays and omissions. Hospital stays are linked to poorer patient clinical outcomes, poor patient experiences and increased costs (NICE, 2022).
According to Okunoye et al (2022) people with Parkinson's account for 1.33 times higher admissions than a matched control population without Parkinson's. They also observed that this rate has declined in comparison with previous studies. Cottrell and Brydon (2020) stated that people with Parkinson's accounted for 75 000 additional bed days, with an estimated cost to the NHS of £11 400 per admission.
Parkinson's UK (2018) has stated that patients with Parkinson's receive suboptimal care during their hospital admission despite the need for NHS staff to demonstrate the NHS Constitution values (Department of Health and Social Care (DHSC), 2021). They found that 63% of patients in hospital did not receive their dopaminergic medications on time, resulting in 78% of patients experiencing unnecessary stress and anxiety (Parkinson's UK, 2018). The establishment of the NHS Constitution values by the DHSC (2021) are embedded in nursing practice and these principles are set out to improve health and wellbeing, supporting people mentally and physically, and striving to make people better when they are ill. Therefore, it is a concerning discovery that patients' health should deteriorate while in the hands of professionals who are regarded as experts.
Parkinson's UK's 2015-2019 Strategy aimed to improve care and increase performance by 25% within 5 years of the ‘Your Life Your Services’ survey, bringing together all hospitals in England and 700 patients and carers affected by the condition (Parkinson's UK, 2020), although an achievement of 23% was evidenced.
To achieve an accurate insight into why patients receive suboptimal care in hospital, evidence and experience from service user involvement, also known as experts by experience (EBE), can be invaluable. EBE can provide a true insight and add value at all stages of the patient journey by giving a unique perspective and providing suggestions for improvements, obtained from personal accounts (Care Quality Commission, 2022). Other associated benefits exhibited by EBE include raised self-esteem and confidence, as well as increased social interactions (Omeni et al, 2014).
Timing of medications
Hou et al (2012) conducted a study on medication administration in hospitalised patients with Parkinson's to determine the ‘on-time rate’. Medication regimens for patients with Parkinson's are individualised and often require frequent drug administration throughout the day to maintain the optimum chemical balance for the individual (NICE, 2022). The effectiveness of Parkinson's management is therefore greatly dependent on the ‘on-time rate’. This quantitative study used a computerised medication administrations system to provide information on the exact time that medication was given to a patient. Quantitative research is regarded as a specific approach, which is based on numerical data, or quantities, even when the variable concepts are difficult to measure (O'Leary, 2014). According to Parahoo (2014) quantitative research requires a large sample size to measure the variables and be representative of the target population. The Hou et al (2012) study reviewed 100 patients, where 3873 dose of Parkinson's medications were prescribed during the hospital stay. Among 675 incorrect medication administrations, 300 doses were late by more than 30 minutes, and 53 doses were given early by more than 30 minutes. This was despite clinical guidance by NICE (2022) recommending dopaminergic medications should be administered within 30 minutes of the prescribed time. Hou et al (2012) found that 89.9% of patients had at least one incorrectly administered medication during their hospital stay. Unfortunately, this study failed to highlight why such shortcomings occurred. It would be easy to assume it was the fault of the administering clinician, without considering that patients could be off the ward for clinical or non-clinical reasons meaning this figure may be unrepresentative of mitigating circumstances and not provide a true representation.
Similar studies by Skelly et al (2015), Gerlach et al (2012) and Lance et al (2021) have also reported misadministration of medications. Although all these studies reported medication timing errors, timings differed. Differences in methodology has limited the comparisons of the findings. Hou et al (2012) used a cut-off time of 30 minutes before or after medication administration was due. However, similar studies have used as little as 15 minutes or as much as 60 minutes as cut-off times (Skelly et al, 2015; Lance et al, 2021). This raises the question whether should there be a standardised definition for dopaminergic medications timings. It also raises the question of what could be done improve the timeliness of medication administration in hospital.
Staff education
There are many contributing factors to dopaminergic medications errors, including staff shortages and increased ward pressures, which may preclude timely administration. However, lack of staff education is the common theme throughout the study by Lance et al (2021). In this study, an education and awareness campaign to reduce medication errors in patients with Parkinson's was introduced, consisting of staff education sessions. To determine the effectiveness of this intervention, an audit of hospital medication charts was performed to establish a baseline error rate. The audit was repeated after the awareness campaign, showing a significant reduction in medication errors from 22.5% to 9.3%. Although this intervention took place in one hospital, it is possible to apply the same intervention to other settings, making this study transferable (Parahoo, 2014). A major limitation was the sample size (n=28 and n=16 post-intervention) and the length of time over which the study was conducted. Lance et al (2021) compared medication error rates before and after a 3-month period in which there were many medication events, but few admissions recorded. It is likely that more admissions would have led to more medication misses. This may have impacted the results. A longer study period, incorporating a larger number of hospital admissions, might have demonstrated a statistically significant improvement to support this study's findings.
Unavailable medication
Medications not being readily available is another recurrent factor in suboptimal administration timings, as described in a study by Nance et al (2020), whose main objective was to discover barriers to timely administration.
Nance et al (2020) found that medication administration errors most often happened in the first 2 days after admission, and this is consistent with medications not being readily available. Nurses being unfamiliar with their patients' needs can also increase misadministration (Nance et al, 2020). This study's main intervention was to stock dopaminergic medication in dispensing machines on the wards and use visual prompts. Following the initiation of this intervention there was sustained improvement in the timely delivery of doses from 65.5% to 86.4%. However, a flaw within this study is sampling bias, which is easily introduced and can result from the effect of researchers sampling locally from a population that is known to them (Moule, 2018). Nance et al (2020) were identified as employees from the hospital used in this study, making it possible that convenience sampling was used. Any effect on the results can be difficult to judge, suggesting this is a weak sampling technique (Parahoo, 2014).
Prolonged hospital stays
A study by Gerlach et al (2012) found that more than one fifth of all patients experienced a deterioration in motor symptoms during their hospital stay and one third of patients had more than one complication during the admission, including falls, constipation, infection and pressure damage. This can result in longer hospital stays, with the study highlighting this could be up to approximately 14 days compared to patients without Parkinson's. Gerlach et al (2012) suggested that this was due to more than one quarter of patients reported to not have been given their medications on time. It is concerning to note that 44% of patients with Parkinson's in the study showed no or limited recovery after discharge, although the importance of good multidisciplinary working was highlighted as a key part of post-discharge care (Gerlach et al, 2012).
Gerlach et al (2012) used a qualitative approach to their study, which can emphasise the individual's voice in research. Kumar (2019) suggested that qualitative research follows an open, flexible and unstructured approach to enquiry and aims to explore diversity, rather than to quantify. Gerlach et al's (2012) survey was distributed by post and aimed to capture the attitudes, beliefs, opinions, values and views of patients and caregivers affected by Parkinson's. This design may have been considered quick and easy to complete in the hope it would increase response rates (Parahoo, 2014). A respectable 77% responded, making this study representative of the target population. However, in a hierarchy of evidence, this data capture method is not the gold standard of effectiveness in research, unlike randomised controlled trials (Polit and Beck, 2022). However, Parahoo (2014) suggested that despite this, surveys are the most commonly used method of data collection because they are economical and easy to distribute.
Skelly et al (2017) evaluated the hypothesis that prompt delivery of dopaminergic medications in hospital was associated with a decreased length of stay. Skelly et al (2017), unlike Gerlach et al (2012) found there was no association between delayed dopaminergic administration and prolonged hospital stay but, rather, found that existing comorbidities were strongly associated with length of stay. This is the first study to highlight this theory, however, the researchers failed to measure the severity of Parkinson's in the study sample. If most patients were in the early stages of Parkinson's without noticeable medication wearing-off symptoms, then delayed medications may be well tolerated, thus weakening this theory.
Conclusion
It is evident that there is a significant correlation between incorrect timing of medication and worsening Parkinson's symptoms, often resulting in prolonged hospital stays. Several research studies noted that medication timing errors were related to paucity of knowledge among nurses or medications being unavailable. Evidence has suggested that often the most simple of interventions can have the greatest impact, resulting in significantly better clinical outcomes. Overall, evidence indicates that pharmacological management for patients with Parkinson's in secondary care is often rudimentary and underdeveloped.
KEY POINTS
- Parkinson's is the second most common neurodegenerative disorder after Alzheimer's disease
- Although Parkinson's is typically a slow progressive disorder, it does have a huge impact on patient's abilities and quality of life
- Patients with Parkinson's are 1.5 times more likely than patients without the disorder to be hospitalised and have a significantly prolonged hospital stay
- If patients with Parkinson's do not receive their dopaminergic medication on time, it can have adverse health implications, impacting on patient's activities of daily living and even mortality
- The effectiveness of managing Parkinson's is greatly dependent on the adherence to administering Parkinson's medications on time as prescribed
CPD reflective questions
- Do you have a procedure for identifying patients with Parkinson's in your practice area and how is this communicated to the multidisciplinary team?
- What systems do you have in place to support the correct timings of medication administration to patients with Parkinson's?
- Reflect on your care of a patient with Parkinson's: what steps will you take to develop your practice when caring for these patients in the future?