Experience of care for Parkinson's disease in European countries: a survey by the European Parkinson's Disease Association

Few studies report on the experience of care for patients with Parkinson's disease (PD) from their own point of view.


Introduction
There is an increasing emphasis on patient experiences of care in healthcare systems [1,2], which may inform provision of care to meet the needs of patient populations. In Parkinson's disease (PD), satisfaction with care is also associated with better quality of life [3,4]. However, there is currently limited information on patients' experiences of care and areas of unmet needs from the patients' point of view in PD. 'My PD Journey' is an initiative by the European Parkinson's Disease Association (EPDA) to identify current gaps in Parkinson's care from the point of view of people with Parkinson's (PwP) (http://www.e pda.eu.com/get-involved/my-pd-journey/). The experience of, and satisfaction with, different aspects of care is reported across 11 European countries from a large quantitative survey in the 'My PD Journey' project. [The copyright line for this article was changed on 24 September after original online publication] patient organizations in PwP from 11 countries (Denmark, France, Germany, Hungary, Ireland, Italy, Netherlands, Slovenia, Spain, Sweden and UK). Patients who volunteered to participate completed a self-report online survey on their experiences of care pathways (except in Slovenia where, due to low internet access, hard copies of the survey were distributed via the national Parkinson's Association to their members).

Measures
The survey questions were drafted based on a stakeholder meeting of EPDA members from 30 European countries and aimed to gather information about the current state of the Parkinson's care pathways in the 11 countries. The original survey was developed in English, with the language designed to ensure that the survey would not elicit biased responses by the way the questions were phrased. The survey questions were translated into equivalent meaning in each country's language. The draft questionnaire was reviewed by members of the International Parkinson and Movement Disorders Society European Section and EPDA members from the participating European countries to ensure it covered the main relevant areas. The survey was pre-tested with a selected group of PwP (of differing ages and years since diagnosis) to ensure that the survey questions were interpreted correctly.
The final version of the questionnaire included questions on demographics, residency, employment and disease duration, self-rated Schwab and England disability, type of healthcare professionals seen, waiting times and treatments given, frequency of medication reviews, information received and experiences of and satisfaction with healthcare. Frequency of medication review was collected by type of healthcare professionals with the following answer options: 'every 3 months', 'every 6 months', 'once a year', 'once every 2 years or more', 'do not know' and 'does not apply'. Information received was collected by type of information (symptoms, diagnosis and causes of PD, medication, surgical treatments, non-drug treatments, maintaining physical and emotional well-being, financial help available, support organizations, support for carers, where to find more information on PD, and taking part in clinical trials), and a summary score was created for quantity of information provided. Satisfaction with care was assessed in relation to (i) care received from nine different clinical professions [general practitioner (GP) or family doctor, hospital doctor, general neurologist, care of the elderly doctor (geriatrician), neurologist who is a specialist in Parkinson's, Parkinson's nurse specialist (PDNS), physiotherapist, occupational therapist, speech and language therapist] and (ii) eight different aspects of care (How often your treatment plan is reviewed, The way professionals communicate with you about your condition and treatment options, The information you have received from healthcare professionals, Your level of involvement in decisions about your treatment, Your family's/carer's level of involvement in decisions about your treatment, The availability and accessibility of suitable treatment options when you need them, The suitability of your treatment for your condition and circumstances, The way the various professionals work together to deliver your treatment and care).
Participants were also asked about satisfaction with the initial diagnostic consultation and sensitivity of communication of the diagnosis. All responses were rated on a Likert scale from 1 ('very dissatisfied') to 5 ('very satisfied'), except for sensitivity of diagnosis which was measured from 1 ('not at all sensitively') to 4 ('very sensitively'). Answers of 'does not apply' or 'do not remember' were treated as missing data.
As this was a survey by a patient organization on care experiences, no ethics committee review was required. Informed patient consent was not applicable for this study.

Data analysis
Descriptive results are presented with total numbers and percentages and mean with standard deviation (SD) or median (range), if not normally distributed. Data were tested for normality using the Kolmogorov-Smirnov test. Principal components analysis was conducted on the eight items on satisfaction with aspects of care to determine whether a summary score for this item could be created. As all items of the eight aspects of care loaded on one factor with small differences between the factor loadings (Table S1), a total score for overall satisfaction with care was created as an average of all items on aspects of care (range 1-40).
Correlations between variables were examined using bivariate Pearson correlations, and independent samples chi-squared and t tests were calculated to explore any significant differences between groups. For data that were not normally distributed, non-parametric alternatives were used, i.e. Spearman correlations, Kruskal-Wallis H and Mann-Whitney U tests using a significance level of 5%. Comparisons between countries were adjusted with the Bonferroni correction for multiple comparisons between 11 countries and the type of healthcare professional. All analyses were conducted using SPSS (version 21; IBM Corp., Armonk, NY, USA).

Participants
In total 1775 adults (958 men, 817 women) participated with an average age at diagnosis of 58 (range 25-90; Table 1). Years since diagnosis spanned from <1 year to 42 years (Fig. S1). A large proportion of the sample was from Sweden (46%), and a sensitivity analysis of the sample excluding the Swedish sample was therefore conducted. The Swedish population on average had an earlier age of onset (56.7 years vs. 60.5 years), shorter disease duration (3.9 years vs 4.4 years), higher rates of employment (20.9% vs. 16.3%) and fewer people living in cities (45.1% vs. 27.2%) than the non-Swedish population ( Table S2).

Provision of care
Diagnosing clinician and referral times Of the 1485 respondents who answered the question about diagnosing clinician and referral times, 5% reported that they had been diagnosed by a GP, 34% by a general neurologist, 52% by a specialist neurologist, 4% by a hospital doctor and 1% by a geriatrician, with the remaining 4% stating 'other'. In all of the 11 European countries, the majority reported they had been diagnosed by a specialist neurologist, except in France, Germany and Spain where the majority were diagnosed by a general neurologist (P < 0.0001).
If they were referred on to another specialist, waiting times varied between <1 month and >4 months to see a general neurologist or specialist PD neurologist but were generally longer to see a geriatrician, a PDNS or a therapist, with waiting times of >4 months for most healthcare professionals (Figs 1 and S2). Waiting times to see a specialist PD neurologist were similar between all countries; however, there were some differences in waiting times to see a therapist, a PDNS or a general neurologist between countries (supplementary material 2).

Medication reviews
Seventy-four per cent of 1328 who responded to the question on medication reviews reported that they had medication reviews by a specialist PD neurologist, 30% by a general neurologist, 23% by a PDNS, 18% by a GP, 9% by a hospital doctor and 5% of PwP had reviews by a geriatrician. Overall, 10% reported that their medication was reviewed by any healthcare professional every 3 months, 37% every 6 months, 40% once a year and 13% once every 2 years or more ( Table 2). In Sweden, medication reviews were more frequent than in the other countries across all healthcare professions (all P < 0.0001) except by geriatricians. The frequency of review by country is shown in Table S3 and by healthcare professional in Table S4.

Satisfaction with care
Satisfaction with care by aspect of care Almost two-thirds of participants reported satisfaction for how involved patients felt in decisions on their treatment (n = 819/1304, 63% of respondents who answered this question) and for their family's/carer's level of involvement with decisions about treatment (667/1079, 62%), followed by the way healthcare professionals communicated with PwP about their condition and treatment options (722/1265, 57%) and information received from healthcare professionals (689/1269, 54%; Fig. 2). Approximately half (663/ 1270; 52%) were satisfied with how often their treatment plan was reviewed and with the suitability of their treatment for their condition and circumstances (665/1288; 52%) and 564/1181 (48%) were satisfied with the availability and accessibility of suitable treatment options when they needed them. Satisfaction was lowest (462/1114, 41%) for patients' perception of the way the various healthcare professionals work together to deliver treatment and care. In the sensitivity analysis, in both the Swedish (59%) and non-Swedish sample (67%), satisfaction was highest for how involved patients felt in decisions on their treatment and lowest for the way various healthcare professionals work together to deliver treatment and care (32% in the Swedish and 49% in the non-Swedish sample). Level of satisfaction with aspects of care by country is shown in Fig. S3. All countries were most often satisfied with how involved patients felt in decisions on their treatment, except in Hungary (the way healthcare professionals communicated with PwP about their condition and treatment options, 84% satisfied), France (how often their treatment plan was reviewed, 78%), Slovenia (information received from healthcare professionals, 65%), Spain (family's/carer's level of involvement with decisions about treatment, 57%) and Italy (availability and accessibility of suitable treatment options when they needed them, 33%).
All countries were most often dissatisfied with the way various healthcare professionals work together to deliver treatment and care, except in Slovenia (45%) where they were most often dissatisfied with how often their treatment plan was reviewed and in Italy (14%) where they were most often dissatisfied with their carer's level of involvement in decisions about treatment.

Satisfaction with care by profession
The highest satisfaction levels with overall care were reported with care received from physiotherapists (n = 639, 77% of respondents), followed by specialist neurologists (819, 73%) and PDNSs (534, 73%). 602 (60%) of PwP reported that they were satisfied with the care they received from their GP, 219 (52%) with the care from their hospital doctor, 372 (57%) from their general neurologist, and 73 (49%) were satisfied with the care they received from their geriatrician (Fig. 3). In the sensitivity analysis, whilst the Swedish respondents were most satisfied with the care received from specialist neurologists (76% satisfied) and least satisfied for hospital doctor (44%), the non-Swedish sample reported that they were most satisfied with care received from physiotherapists (80%) and least satisfied with geriatricians (44%).
Satisfaction with care by healthcare profession between countries is shown in Fig. S4).

Correlates of overall satisfaction with care
There was no significant correlation between overall satisfaction with care and age, and there was no difference between genders, between employed or unemployed participants, and between rural, town and city dwellers in satisfaction with care. There were weak positive correlations between satisfaction with care and disease duration (r = 0.14, P < 0.0001) and some aspects of care and level of disability, and between  overall satisfaction with care and frequency of medication reviews (r = 0.17, P < 0.0001). Overall satisfaction with care was not associated with waiting times to see another specialist. There were positive correlations with satisfaction with the initial consultation (r = 0.26, P < 0.0001), with how sensitively patients were told they had PD (r = 0.24, P < 0.0001) and with the quantity of information provided (r = 0.24, P < 0.0001). In the sensitivity analysis, similar correlations were reported in the Swedish and non-Swedish respondents.

Discussion
Experiences of care varied considerably between respondents. The majority reported waiting times of <4 months if they had been referred to a general neurologist or specialist PD neurologist, although a substantial proportion reported having waited longer. The frequency of subsequent ongoing reviews by specialists was then much less frequent in the majority, typically once or twice a year with a minority seeing a specialist more frequently. Thirteen per cent were reviewed only every 2 years or less often. Waiting times to see therapists or PDNSs, where available, were often long, reflecting the limited availability of PDNSs and lack of resources for allied healthcare professionals [5]. However, this was not associated with reported overall satisfaction with care. Satisfaction with care received by PwP was highest for how health professionals involve PwP, and their families or carers, in decisions on their treatment, how they communicate with them about their condition and treatments, and with the information they provide. Whilst there is no previous survey to our knowledge that assessed satisfaction with involvement in treatment decisions in PD, in a previous survey by the EPDA in Europe [6] 11.6% of participants reported that they made treatment decisions on their own and 50.6% together with their healthcare professional. It could be argued that those reporting not being involved in these decisions prefer for them to be made by healthcare professionals. However, this contrasts with the finding in this survey that only 63% were satisfied with their involvement in these decisions, highlighting that there is still a continued need to increase patient participation in management decisions in PD. As the survey represents the cumulative experience of PwP over an average of~8 years' disease duration, this may have improved more recently but it is likely that many still perceive lack of sufficient involvement of their own and their carers' views and lack of information being provided.
Approximately half of all participants reported satisfaction with the frequency of reviews of their medication, with how the treatments given were suited to their personal needs, and with the availability and accessibility of treatments when needed. These opinions on the provision of healthcare mirror the often very infrequent reviews reported by participants and the long referral times to other healthcare professionals and therapists. They highlight the impact of lack of resources to provide regular reviews particularly with advancing disease, lack of access to therapists to respond to an individual's needs on a personalized basis and prevent deterioration and lack of a personalized, responsive system to address complications when they occur. They also highlight that half of PwP feel that a personalized approach suited to the individual's condition and circumstances, as opposed to a standardized approach for PD, is insufficiently provided.
The poorest satisfaction rating, however, was reported for the way professionals work together to provide care. This is particularly relevant at times when exacerbations occur, and it reflects the lack of joined-up and integrated care across services for PD in many healthcare systems. This is notable as integrated care with increasing emphasis on multidisciplinary approaches is a key aim for many healthcare systems, with evidence suggesting better outcomes, greater satisfaction and cost savings [7][8][9][10][11].
The low satisfaction with a personalized, responsive and integrated approach to the care of PwP is also at odds with an increasing emphasis on patient-centred care in modern healthcare systems. Key components of patient-centred care have been outlined as including greater emphasis on patient and caregiver perspectives and priorities, and efforts to close gaps in knowledge amongst patients and caregivers in a variety of aspects [12]. Whilst there is considerable variability in preferences for decision-making and provision of communication [13], studies have outlined that, in addition to addressing their motor and non-motor problems, PwP want their physicians to listen to them and take their concerns seriously, improving two-way communication between patient and physician, to explain their disease comprehensively and to provide the latest information on PD and its treatment, whilst also taking into account their anxiety towards the future, communication difficulties and slowness [14]. However, addressing these issues often takes additional time, which can be difficult to provide in a general neurology clinic, or requires additional appointments, e.g. with a PDNS or other healthcare professional. In more advanced disease, with more complex needs requiring a multidisciplinary approach, the need for greater integration of services was highlighted in a Dutch study in nursing homes, which found that poor access to specialists and coordination of care was one of the unmet needs together with the need for emotional support and improved knowledge of PD [15]. Whilst there was only a weak correlation of disease duration with overall satisfaction with care, easier and better communication between healthcare professionals is particularly relevant with advancing disease when timely intervention for often complex needs is often needed and information needs to be communicated between different healthcare professionals. Health economic data were not collected, but it is highly likely that the poor communication and integration of care between healthcare professionals also results in increased costs through hospital admissions and deterioration of symptoms.
There were significant correlations of overall satisfaction with care with frequency of medication review, possibly as a marker of accessibility of care, and with the initial diagnostic experience, including how the diagnosis was communicated, despite the fact that average disease duration was over 8 years. Whilst the causality in a cross-sectional survey cannot be established and those overall unhappier with treatment may also have viewed their initial experience more negatively, this emphasizes the importance of the initial consultation and the need to communicate the diagnosis sensitively.
Little previous information on these aspects of healthcare provision is available in PD although there is evidence from other disorders that outcomes can be improved through integrated working [10] with increasing efforts to improve collaborative working [16].
A previous US-based study surveyed members of a US Parkinson's registry [17] and showed similar results to this survey in Europe. Whilst many of the questions were not directly comparable, the results on communication and information by healthcare professionals about PD and medications in that study were overall also relatively high (56% vs. approximately 80% in this survey), and there was greater overall satisfaction with PD specialists than general neurologists. In both surveys, fewer respondents were satisfied with information on non-drug treatments (28% vs. 41%) despite increasing recognition of the importance of these aspects [18].

Limitations
Participants were recruited through volunteers from national organizations and, particularly as information was not available on non-participants, may therefore be biased towards more active and engaged PwP and towards those actively seeking greater involvement in their care. Satisfaction with information and involvement may be higher in those who seek less active engagement, but this group may also be more dependent on better communication of healthcare professionals. Furthermore, nearly half of all respondents in the survey were from Sweden. However, on excluding the Swedish sample from the analysis, the results were overall comparable. Nevertheless, due to the relatively small number of participants in each of the other countries, the retrospective nature of the survey and possible differences in recruitment bias, results of differences between countries should be interpreted cautiously. It was not possible to verify the diagnostic accuracy in those who completed the survey. However, it is unlikely that, given the large sample, the results would vary significantly if only those with a confirmed diagnosis were included. In addition, the range of disease duration was from very early disease (<1 year) to very long-standing disease (>40 years) and it is likely that the results of this survey are representative for PwP across disease stages.
Whilst acknowledging the limitations of the nature of this survey, this large survey of the experiences of PwP in Europe suggests that, despite the increasing constraints in healthcare systems, there is a need to adjust healthcare services for PwP, e.g. by providing more flexible appointments, increasing provision of information in PD and its management to PwP and non-specialist healthcare professionals, and improving links between healthcare professionals. This has the potential to substantially improve satisfaction with care in PwP, with limited need for additional resources.

Disclosure of conflicts of interest
Dr Hotham and Dr Merritt report grants from the European Parkinson's Disease Association during the conduct of the study. Dr Schrag reports funding from the European Parkinson's Disease Association.

Supporting Information
Additional Supporting Information may be found online in the supporting information section at the end of the article: Table S1. Principal components analysis results for satisfaction with aspects of care (N = 1413) Table S2. Demographic and clinical characteristics of participants from Swedish and non-Swedish sample Table S3. Frequency of medication review by country Table S4. Median medication review frequency by clinician (n = 1328*) Figure S1. Years since initial diagnosis of PD Figure S2. Waiting times to see professionals from referral by country Figure S3. Satisfaction with aspects of care by country Figure S4. Satisfaction of care with healthcare professional by country