Abstract
Abstract
INTRODUCTION
Throughout the course of their illness, people with Parkinson’s (PwPs) will usually experience a range of motor and non-motor symptoms that will affect their daily activities and quality of life (QoL) to varying extents. In particular, motor and non-motor ‘wearing-off’ fluctuations are a common feature of long-term levodopa use [1, 2], and affect a majority of PwPs within 10 years of initiating therapy [3].
It is now generally accepted that early detection and management of wearing-off is important in the optimal management of parkinsonian symptoms. However, its identification is often hampered by a lack of patient education, awareness, patient-clinician communication, and limited time for assessment [4, 5]. Moreover, not all patients will present with the same pattern of symptoms. In addition to the classic ‘motor’ fluctuations, several studies show non-motor fluctuations (e.g. fluctuations in mood, pain and fatigue) also negatively impact patient QoL [2, 5–8]. Other studies report that the health status of the PwP has a significant impact on the well-being of their care partner [9, 10]. However, most work to date has considered the PwP and their care partner separately and there is a need to gather matched data (i.e. from the PwP and their care partner).
The aims of this survey were to better understand the impact of wearing-off on patient and care partner lives and to assess how often they are asked about troublesome symptoms and QoL in their specialist consultations. In addition, anecdotal evidence has suggested that care partners may notice symptoms of wearing-off before PwPs do themselves, and an additional aim of this matched survey was to evaluate this assumption.
METHODS
This online survey was conducted between June and August 2013. The structure and contents of the survey were designed in collaboration with Parkinson’s Movement and The Cure Parkinson’s Trust (CPT), and the development of the survey was funded by Lundbeck Ltd and Teva UK Limited. Matched pairs (PwP and care partner) were recruited via CPT email invitations to PwPs/care partners in their database. The database includes 538 people (PwP, care partners and other interested parties) who have signed up to receive the CPT newsletter (e.g. via social media, the CPT website or attendance at CPT events). Survey participation was incentivised; for every completed survey of a ‘matched pair’ of a PwP and their care partner, the CPT received a donation from the sponsors. PwPs/care partners were not personally incentivised. The PwP had to have a specialist confirmed diagnosis of idiopathic PD, a disease duration of >2 years and be taking a standard medication for their PD (evidenced by questions 1, 2 and 3 of the survey), but there were no other formal inclusion or exclusion criteria. The PwP completed their part of the survey first and then sent their individually assigned survey link to their choice of care partner ensuring matched pair data collection.
The survey was developed and conducted using a publicly available online survey tool (Survey Monkey). The survey comprised 21 questions and domains included wearing-off symptoms and QoL; questions were a mix of multiple choice and free entry format. The list of parkinsonian symptoms was taken from the WOQ-32 questionnaire [11,12, 11,12]; although there is some clinical redundancy of symptoms listed, it was considered to provide respondents with the fullest range of options that they might identify with. PwPs and care partners were asked to rate how troublesome each of the 32 symptoms were (7 possible answers ranging from ‘do not experience/not troublesome at all’ to ‘completely controls my life’).
Descriptive statistics were used to summarise all survey data collected in this study.
RESULTS
Sample
Over the 9 weeks that the survey was available online, 47 matched pairs of PwPs and their care partners from 3 countries (UK, USA and Poland) completed the survey. Most PwPs were diagnosed before the age of 66 and most respondents (PwPs) were now aged over 61 years (Table 1). Care partners were usually the PwP’s spouse (44.7% husbands and 48.9% wives), but there was one daughter, one family friend and one care partner of no familial relation.
Troublesome symptoms
There was general agreement between PwPs and their care partners about which individual symptoms are most often considered troublesome; the five symptoms most commonly reported as troublesome were: tiredness, slowness, reduced dexterity, slowness of movement and slowness in the early morning (Fig. 1). However, no individual symptom or type of symptom (e.g. motor or non-motor) appeared to be consistently rated as more troublesome than another.
When asked to consider whether they discussed the troublesome symptoms with their Parkinson’s specialist, almost half (45%) of PwPs indicated that they discuss their troublesome symptoms at every appointment and a further 34% reported that they discuss troublesome symptoms at most or some appointments (Fig. 2). By contrast, only 25% of care partners indicated that they ever discussed the impact of the PwP symptoms on their life (at any appointment), and 28% indicated that that they are not currently asked about the impact of troublesome symptoms, but would like to be.
Wearing-off
When asked about the timing of their troublesome symptoms, 82% of PwPs and 67% of care partners reported noticing troublesome symptoms of wearing-off between 0.5 and 2 hours before the PwP takes their next dose of medication (Fig. 3). However, there was no evidence to support the idea that care partners notice the signs of wearing-off before the PwP. Indeed, more care partners than PwPs (34% vs. 18% , respectively) said they don’t notice them at all.
Most PwPs and their care partners (87% and 74% , respectively) responded that they understood what their specialist means when they refer to ‘wearing-off’. However, when asked to indicate what they thought wearing-off meant, 53% of PwPs and 36% of care partners refrained from answering, and a further 17% of PwPs and 47% of care partners gave an incorrect answer (where the relationship between symptom re-emergence and medication was notconsidered).
Quality of life
Most PwPs and their care partners indicated that a ‘good QoL’ refers to physical health (96% for both), psychological health (64% and 87% , respectively), independence (85% and 83% , respectively) and social relationships (68% and 81% , respectively). Fewer PwPs than care partners responded that their environment is important for a good QoL (38% and 70% , respectively) and only a third of PwPs (34%) and care partners (32%) thought that a good QoL refers to spirituality/religion/personal beliefs.
When asked to consider whether they discussed their QoL with their Parkinson’s specialist, almost half (47%) of PwPs indicated that they discuss their QoL at all or most appointments and a further 23% reported that they discuss their QoL at some appointments (Fig. 4). By contrast, only 34% of care partners indicated that they ever discussed the impact of the PwP’s symptoms on their QoL (at any appointment), and 26% indicated that that they are not currently asked about their QoL, but would liketo be.
DISCUSSION
The results of this matched survey underscore the broad impact that Parkinson’s has on daily life on both PwPs and their care partners, and indicates the need for better communication between patients, their care partners and Parkinson’s specialists. When evaluating the changing condition of a PwP many clinicians will gather supportive information from care partners (especially when the PwP has cognitive impairment). While care partners were found to be a reliable correlator of when a PwP notices that their medication is wearing-off, the survey did not show that care partners notice symptoms of wearing-off before PwPs.
With respect to wearing-off, the survey demonstrates that PwPs experience troublesome symptoms of wearing-off for large periods of the day. PwPs reported that they found a wide range of symptoms as troublesome, with no type of symptoms being consistently reported more troublesome than another. There was a high congruency between the wearing-off symptoms that PwPs find troublesome and those that care partners find troublesome, with both groups reporting the same ‘top 5’ symptoms. The most commonly reported troublesome symptom was ‘tiredness’ and the non-motor symptom of fatigue is now accepted as one of the most common Parkinson’s symptoms with a reportedprevalence of up to 58% [13]. Fatigue in Parkinson’s has been reported to be qualitatively different from that suffered by the general population [13], and a recent study found that about one-third of Parkinson’s patients suffer from ‘distressing’ fatigue [14]. The other most commonly reported troublesome symptoms were all motor in nature – slowness, reduced dexterity, slowness of movement and slowness in the early morning.
Symptoms of general slowness and reduced dexterity are relatively easy to identify in a routine neurological examination and thus the results highlight the need for the clinician to routinely ask about non-motor symptoms which the patient might find more troublesome. Likewise, although early morning problems are reported to affect 62.3% of PwPs [15], a clinician is less likely to identify ‘slowness in the morning’ (morning akinesia) unless they specifically ask the PwP and care partner about their early morning function. Interestingly, although most PwPs and care partners had clearly heard of ‘wearing-off’, the survey indicates that they were less clear about what it actually means. This is important because improved PwP/care partner awareness should facilitate the early identification (and therefore timely management) of wearing-off.
QoL for PwPs can be affected by many factors–making it a potentially time consuming topic for clinicians to discuss during a standard consultation.Indeed, the results of this survey confirm that PwPs and care partners consider their QoL to be dependent on a number of factors including physical and psychological health, independence and social relationships. In this respect, it is reassuring that most PwPs felt that their clinician frequently asks about their QoL. However, it is still worrying that around 15% of PwPs only rarely discussed their QoL or felt that they had to raise it themselves. It is also of concern that around a quarter of care partners indicated that they would like to discuss the impact of Parkinson’s on their QoL. While a full discussion of care partner QoL is probably difficult to manage within the very short timelines of a standard consultation, current guidelines do recommend that families and care partners should be given information about their entitlements to care assessment and the support servicesavailable [16].
Limitations of this study are those inherent to patient surveys and include the recruitment method, which meant that only those PwPs registered with the CPT and with access to the Internet were enrolled. It is likely that PwPs who are registered with the CPT may be more active in the self-management of their illness and may therefore be better educated around issues such as wearing-off and health related QoL. The CPT database includes over 538 patients, and of these we received responses from 47 matched pairs – who again may represent the more motivated PwPs and there was a higher representation of responses from the United Kingdom (where the CPT is based).
Despite the limitations in this type of study, this survey provides important insights related to the impact of parkinsonian symptoms on PwPs and their care partners. In particular the data suggest that there are PwPs and care partners who want to discuss symptoms that are troubling them and also their QoL in consultations but are not given the opportunity to do so. Aids to help prompt and facilitate QoL conversations in consultations would be welcomed. Greater understanding of the fluctuation and emergence of symptoms could be aided by ongoing monitoring.
Footnotes
ACKNOWLEDGMENTS
This survey was funded by Lundbeck Ltd and Teva UK Limited who have had the opportunity to comment on the medical content and accuracy of this manuscript. However, final editorial control resides with the authors. Medical writing assistance was provided by Clark Health Communications Ltd under the direction of the authors and was funded by Lundbeck Ltd and Teva UK Limited. The authors wish to thank all the people who participated in thesurvey.