Patient perception, preferences and participation
Time intervals in diagnosing Parkinson's disease: The patients’ views

https://doi.org/10.1016/j.pec.2015.02.010Get rights and content

Highlights

  • Patients divide their pathway to the diagnosis of PD into three time intervals.

  • Factors influencing the pathway are patient-, health care provider- or disease-related.

  • Patients have difficulties recognizing the prodromal symptoms of PD.

  • Patients mention their general practitioners have difficulties recognizing PD as well.

  • The majority of all patients are content with their pathway to the diagnosis of PD.

Abstract

Objective

To explore patients’ views on their pathway to the diagnosis of Parkinson's disease (PD).

Methods

A qualitative study of 52 essays written by patients with PD, using comparative content analysis.

Results

Patients divide their diagnostic pathway into three time intervals: recognition of the symptoms; the decision to seek help; and the process of diagnosing PD. Patients have difficulties recognizing the prodromal symptoms of PD (their knowledge is based on public figures with advanced PD) and mention their general practitioners do as well. The decision to seek help is influenced by the patient's attitude toward health care and by their significant others. More than half of the patients believe their diagnosis was delayed. However, the majority of all patients are satisfied with their diagnostic trajectory.

Conclusion

The pathway to diagnosing PD is an iterative process influenced by patient-, health care provider- and disease-related factors. Despite possible delay in diagnosis, patients are content with their pathway.

Practice implications

In order to facilitate earlier diagnosis and timely therapeutic intervention (in particular with regard to future possibilities for disease modifying therapy), effort is required to increase the recognition of prodromal symptoms of PD by patients, their significant others and health care providers.

Introduction

Parkinson's disease (PD) is now recognized as a multisystem disorder with motor and non-motor features [1]. Some motor and non-motor features are prodromal symptoms: symptoms that are already present before the onset of the typical motor signs of PD [2]. Patients seem to have prodromal symptoms years before they are diagnosed with PD [2], [3], [4]. As physical abnormalities do not immediately lead to symptoms, the process is influenced by attention, awareness, interpretation and attribution of the patient [5], [6]. The illness representations, which patients form of a perceived health threat, influence coping strategies including help seeking behavior [7], [8]. Earlier research has shown that it takes patients more time to recognize their motor symptoms and to realize they need medical attention, than it takes the general practitioner (GP) to diagnose PD [9]. On the other hand, it is not uncommon that a patient needs to visit a number of health care providers before the diagnosis of PD is made [10]. When it comes to women and patients with young onset PD, health care providers seem to require more time to diagnose PD [11], [12]. However, patients can benefit a lot from an early diagnosis of PD. Early recognition of symptoms allows patients and health care providers to discuss the benefits of timely therapeutic intervention on the one hand and the risk of side effects on the other. They can then make a shared decision on a customized balance between advantages and disadvantages, taking into account the patient's personal situation and preferences. This is likely to result in maintenance of quality of life, slowdown of clinical progression and reduced mortality [13], [14], [15].

Research in patients with cancer has shown that the pathway from the first recognizable symptoms to the diagnosis can be influenced by a number of factors such as the nature of the symptoms and the emotional response to them, knowledge of the disease and the consultation of significant others [16]. In chronic diseases with a less threatening outcome, such as diabetes mellitus, the same factors are of importance [17]. For PD it is unknown which factors influence the diagnostic pathway and how patients reflect on their pathway. However, more insight into the patients’ views could lead to interventions that facilitate an earlier diagnosis by avoiding as much delay as possible in the diagnostic pathway. In this study we aim to gain insight into the patients’ views on their diagnostic pathway and the factors that influence it. Furthermore, we want to know how patients reflect on their pathway.

Section snippets

Recruitment

This study is part of a larger study on the prodromal symptoms of PD and the patients’ views on the trajectory toward the diagnosis. For this reason, all patient members of the Dutch Parkinson's Disease Association whose email addresses were known (n = 4717), received an email, in which the study was explained and they were asked to participate. In case patients were willing to participate a digital essay format was sent. Digital essays rather than individual interviews were chosen to assure

Characteristics of the study population

About half of the participants were women (54%) (Table 2).The mean age at the time of diagnosis was 56 years (SD 14.5), varying between 32 and 84 years. The majority of the patients was employed (62%) and lived with a partner and/or children (75%) at the time of diagnosis.

Diagnostic process

We could distinguish three time intervals in the individual pathways to diagnosis, as described by patients: recognition of the symptoms, the decision to seek help from health care providers and the process of diagnosing PD (

Discussion

To the best of our knowledge, this is the first study that explores the pathway to the diagnosis of PD from the patients’ viewpoint. The pathway to the diagnosis of PD, as described by patients, can be divided into three time intervals: recognition of the symptoms, the decision to seek help and the process of diagnosing PD. Impeding and stimulating factors concerning the patient, the health care provider and the disease itself can influence each of these time intervals. Although more than half

Funding

This study was supported by grants of the Dutch Parkinson's Disease Association 2012-V15 and the Health Insurers Innovation Foundation 2687.

Acknowledgement

The authors are grateful for the effort of the participating patient members of the Dutch Parkinson's Disease Association.

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