The Experiences of Treatment Burden in People with Parkinson’s Disease and Their Caregivers: A Systematic Review of Qualitative Studies

Medications

PwP reported taking multiple medications at different times of the day with prescriptions being changed and adjusted regularly over time to find the right dosage to help mitigate their symptoms [30–36]. PwP were supported by their caregivers with managing and administrating medications as well as reminding them of medication times [9, 38]. The unpredictability and fluctuating symptoms of PD as well as the variability of PD medication effectiveness on a daily basis were some of the reported challenges with medication taking [35, 38–41]. PwP and caregivers monitored the response to PD medications and trialed different medication doses and timings as well as experimenting with other factors such as diet, sleep and exercise to see if this influenced their PD symptoms [33, 38]. PwP also described the ‘wearing off’ effect of PD medications causing poor control of symptoms between doses [36, 40–42]. This led to frequent changes in medications timings and doses, at times on a ‘trial and error’ basis, causing considerable confusion regarding medications [38]. Increasingly visible tremors due to the lack of medication effectiveness caused PwP to worry that the medications were not working [40]. The lack of positive symptom response observed by PwP (but not by family members) was reported as a reason for poor medication adherence [35]. Other reasons for poor adherence reported by both PwP and caregivers were forgetting to take medications, confusion about which tablets were due or being preoccupied with work or social activities [32, 43].

Other challenges with taking medications experienced by PwP and caregivers related to the precise timing of medications to avoid the return of symptoms, planning of mealtimes and diet due to PD medications and medication side-effects [32, 40–45]. PwP and caregivers described planning and scheduling activities such as exercise, shopping, meeting family or friends or clinical appointments around their medication timings [30–32, 40]. They established a daily routine around times when their medications were most effective [32, 42]. This was especially important if they had social plans to avoid any distress or embarrassment as PwP did not want their symptoms to be noticed by others [32, 40]. Some reported that the fixed schedule of medication timings interfered with their personal daily activities at times [32, 46]. There were contrasting attitudes towards medication adjustments in PwP: those who described themselves being more flexible and changing their medication times or taking extra doses around their work or daily activities to manage their symptoms [35, 42]; and those who only made changes in their medications after seeking advice from healthcare professionals [40]. Additionally, PwP and caregivers took careful consideration in planning their mealtimes and diet such as avoiding protein-rich meals to prevent drug and food interactions [30, 45]. Caregivers of PwP with swallowing difficulties also reported the need to consider how they could administer medications to the person with PD during mealtimes [47].

Managing the side-effects of taking PD medications such as compulsive behavior, frightening nightmares, hallucinations, disinhibition, dry mouth, drowsiness and insomnia were challenging for PwP and caregivers [34–36, 48]. Some PwP also reported that the medications made them feel worse rather than helped their symptoms [34, 40]. PwP described taking medications as “the lesser of two evils”, balancing the need for PD medications to help their symptoms alongside concerns of potential long-term side-effects of dyskinesia [35]. However, living with PD meant being dependent on medications, as PwP and caregivers described how they made sure they always had their PD medications with them when leaving the house [32, 40]. Furthermore, their dependence on medication increased as PD progressed and PwP described shorter time intervals between taking medications [32, 42].

Healthcare provider obstacles: Individual provider issues

PwP and caregivers described having to prepare for and attend separate appointments with doctors (General Practitioner (GP) and PD specialist), PD nurse specialist or physiotherapist [9, 49–53]. Some reported issues with transportation and the additional time spent preparing and travelling to healthcare appointments [36, 53]. Moreover, PwP and caregivers in countries across different global regions such as the UK, Netherlands and Indonesia described a lack of patient-centered care from many healthcare professionals with a predominant focus on medication needs, rather than a holistic approach that considered their social, psychological and care needs which may be more distressing [36, 54–56]. PwP and caregivers in the UK described poor relationships and unsatisfactory interactions with healthcare professionals due to lack of consulting time and infrequent follow-up appointments [9, 55]. Caregivers reported attending healthcare appointments with the person with PD they cared for as they were worried that person with PD may forget to mention certain things and not remember the consultations at the end [37]. However, they found that their views and opinions were not considered during medical appointments, despite their active role in managing PD [33, 48]. Some caregivers felt that they could not question or challenge the advice given by doctors, even if they did not fully understand the reasoning, due to the fear of being reprimanded [57]. Moreover, the predominant management of PD by specialists in the UK meant that PwP and caregivers felt that their GP lacked detailed knowledge about PD although they recognized that their GP still had an important role [9, 55]. In Australia, they described the reluctance from GPs to adjust prescriptions without input from their neurologist, causing a delay in medication changes and management of PD [41].

Healthcare provider obstacles: System issues

Attending medical appointments with multiple healthcare professionals that all focused on different medical issues was challenging [38, 58]. PwP and caregivers in Ireland, UK, Singapore and Netherlands experienced a lack of coordination, continuity of care and cohesion between the different health and social care services [9, 58]. PwP and caregivers reported a lack of clarity over the roles of health and social care professionals involved in their care, with no clear multidisciplinary approach [34, 58]. They at times experienced contradicting advice regarding their health and available support services due to the poor cohesion between services [34, 54]. In addition, caregivers perceived that the lack of coordination between services resulted in inadequate monitoring of PD symptoms and medications [9]. PwP and caregivers also described how the inflexible organizational structures of the healthcare systems influenced their interactions with health professionals and care providers [39, 59]. For example, care agency allocation of support workers based on geographical regions meant that they did not have visits from one regular support worker which prevented relationship building [59].

The poor availability of health and social care services increased the treatment burden for PwP and caregivers [9, 61]. In countries such as Australia, Canada, Ireland and UK, PwP and caregivers described long waiting times and lack of access to specialist PD doctors and allied health professionals such as physiotherapists and speech and language therapists, specialist palliative care or hospice services [38, 57]. The deteriorating mobility of the person with PD as the disease progressed meant PwP and caregivers experienced difficulty accessing healthcare and social services due to the limited availability of home visits from those services [39, 44]. Some PwP reported being discharged from specialist clinics to community services as they were physically unable to attend appointments, whilst other PwP made an active decision not to attend clinics as the difficulties of attending appointments and limited consulting time did not have any justifiable benefits as their PD progressed [44, 45]. PwP and caregivers also experienced poor access to social support and funding for home care support, home modifications and access to supportive equipment [9, 57]. Consequently, PwP and caregivers in UK with a publicly funded National Health Service reported making private payments for trained carers and respite as well as purchasing equipment individually due to the long waiting times for private carers and equipment [9]. Similarly in Australia, the inequitable funding system and limited access to home modifications added to the frustration and financial burden to PwP [53].

PwP and caregivers also faced specific challenges with looking after their health in care home or hospital settings, particularly with medications [39, 43–45]. The multiple levels of systemic administration in healthcare caused delays of medication changes for one care home resident with PD as the prescription had to be passed from the hospital specialist to the GP, to the pharmacy before finally arriving at the care home [39]. Wrong instructions, delays in medication administration, a lack of awareness and knowledge regarding medication administration and contraindications for specific drugs including dietary requirements by staff were described by PwP in care homes or hospitals [39, 43–45]. The fixed schedules in care homes or hospitals meant that PwP and their caregivers found that they were unable to administer medications at their usual recommended specific time [41, 45]. This inflexibility led to a loss of autonomy that not only impacted their medication schedules, but also their usual routine for personal care and meals [44].

Information

PwP and their caregivers reported that after being diagnosed with PD, they had to learn about PD, how PD progresses, other health conditions, medications, medication side-effects and available resources and services [30, 62]. However, PwP and caregivers across different countries and healthcare systems reported receiving inadequate information from healthcare professionals on topics such as dietary requirements, managing the progression of PD and prognosis of PD [9, 62]. Due to the lack of information provided, PwP and caregivers reported searching for information themselves from the internet or support groups [9, 57]. However, some PwP and caregivers found unhelpful information that was not relevant to their situation which instead caused distress and made them feel worse about living with PD [9, 57]. Other PwP and caregivers actively chose not to search for information and avoided support groups as it reminded them of their inevitable deterioration with PD [40]. Some PwP and caregivers also described their confusion about medical information provided to them, with contradicting information from different healthcare professionals, at times feeling that they have been sent from “pillar to post” [34, 56].

Due to the lack of information regarding the progression and poor prognosis of PD, PwP and caregivers reported that they were unable to prepare for the advanced illness, plan for the future or make decisions about their health [9, 54]. PwP and caregivers across multiple countries including Canada, Denmark, Ireland, Netherlands, Norway, Spain and UK also reported a lack of guidance on relevant healthcare and social services or support that may be available [9, 54–57]. Consequently, they were unable to access help from the appropriate services even though it may be beneficial [9, 56]. Furthermore, caregivers reported a lack of certainty on whether the symptoms of the person they cared for related to the PD or side-effects of medications [38]. They were uncertain about what changes in health circumstances constituted a need to seek help outside of their routine appointments [38]. Caregivers also commented on the lack of preparation and were unsure about what to do during emergency situations such as falls, resuscitation and psychosis due to the lack of information provided from healthcare professionals [48, 54]. Some caregivers described feeling responsible for obtaining information on their own due to the lack of regular appointments and contact with healthcare professionals [62].

Financial challenges

The financial challenges reported by PwP and their caregivers living in different countries with different healthcare systems related to the costs of travel, healthcare appointments, medications and treatments on top of the potential loss of earnings due to PD or caring for someone with PD as well as consideration of living expenses [35, 64]. Furthermore, the costs of private carers and the potential costs of care homes as PD progresses added to their concerns about financial stability [9, 38]. Studies conducted in Africa (Ethiopia and Tanzania) described a lack of medication supply with PwP and caregivers having to source medications themselves and then paying high medications costs [61, 63]. They also described how treatment decisions were made based on affordability of treatment, rather than medical need [63]. The financial burden of medications were also experienced by PwP and caregivers living in developed countries such as the USA, where they described additional high costs for medications despite already paying for medical health insurance cover [35, 48].

Other aspects of treatment burden in PD

Other aspects of treatment burden in PD include the loss of independence, impact of other long-term conditions, lifestyle changes as well as issues related to DBS. Some of these aspects correlate to the subthemes described by Eton’s framework of treatment burden and are highlighted in this section. As their PD progressed, PwP described frustrations due to their loss of independence and having to rely on others to manage their medications or attend medical appointments [65]. However, a strong sense of independence may potentially be detrimental to PwP and caregivers as it meant that some did not ask for help when required [57]. In addition, some caregivers occasionally felt frustrated at the attitudes of the person with PD and could not understand why they would not comply with medications or dietary recommendations [33, 52]. PwP and caregivers also described how other long-term health conditions such as diabetes and arthritis impacted their ability to manage their health [30, 66]. For example, managing their diet or monitoring blood sugar levels due to their diabetes was challenging for PwP and caregivers [51, 66]. Caregivers also described how their own physical and mental health conditions interfered with their ability to help care for the health of someone with PD [66].

Looking after their health with PD meant PwP attended exercise classes including those specific to PD to maintain their level of functioning and prevent further decline, even if they were unsure of the beneficial effect [30, 67]. PwP and caregivers also reported following dietary requirements to prevent interactions with PD medications or increased their intake of fruits to help digestion as advised by healthcare professionals [30, 52]. PwP who had DBS implanted reported multiple adjustments to find the right level of stimulation settings and medication doses which at times was a long process and increased their number of hospital appointments [31, 60].

Role and social activity limitation

PwP and caregivers described how their role in life had changed and was spent managing their PD and health, with symptoms and medication efficacy that could be difficult to predict on a daily basis [31, 40]. PwP and caregivers reported how their daily lives were dictated by the schedules of medications and appointments of the person with PD [30]. Having to take medications at different times of the day as well as the variable medication efficacy and side-effects impacted their ability to plan or attend social activities outside of the home [32, 46]. PwP reported increasingly relying on others for help as PD progressed, whilst family members or friends of the person with PD found themselves taking on the role of a caregiver [33, 65]. Caregivers described a loss of independence as their lives now revolved around the PwP with unpredictable symptoms and medication schedules impacting their social activities [46, 51]. Some patients with DBS described how malfunction of the device could prevent them from engaging in new activities or disrupt their usual routine although others enjoyed the spontaneity that DBS gave them, no longer having to plan activities between medication timings [31].

Physical and mental exhaustion of self-care

PwP and caregivers reported that their day was filled with medications, appointments, therapy, diet and exercise; constantly reminding them of their life with PD and increasing recognition that they may not go back to living a normal life [9, 50]. The lack of contact with healthcare professionals meant that PwP and caregivers felt ‘alone’ when managing their PD [54]. Caregivers of PwP found themselves responsible for the health of the person with PD, particularly as PD progresses and the capacity for self-care decreases [9, 33]. Caregivers described how the lack of information and uncertainty of what to expect with PD and having to make decisions about the care of their loved ones with PD was very stressful [48, 54]. The lack of information and access to available support services meant caregivers felt physically and mentally worn out [33, 55]. The inevitable progression of PD and increasing dependence of PwP on their caregivers, who may themselves have a worsening health condition may eventually lead to the person with PD moving into placement to help manage their care [30].