In Their Own Words: Fears Expressed by People with Parkinson’s Disease in an Online Symptom Database

INTRODUCTION

Receiving a diagnosis of Parkinson’s disease (PD) has a profound impact on an individual’s mental health. In addition to well-described associations with anxiety and depression, a life-altering and incurable degenerative condition with uncertain prognosis may affect patients’ sense of self, alter their hopes for their future, and engender fear. These concerns have been previously described in other serious illnesses [1], but are infrequently elucidated in existing patient-reported outcome measures for people with PD (PwP). A better understanding of patient fears may help clinicians support PwP and their families through anticipatory guidance concerning specific symptoms, emotional support for existential concerns, and referral to mental health services if appropriate. It may also provide insight into the need to incorporate the impact of fears into assessment of quality of life and patient-reported outcome measures for PD research.

In this study, we assessed the range of fears reported by respondents to the Parkinson Disease Patient Report of Problems (PD-PROP), a series of questions asking PwP to submit up to 5 “most bothersome problems” and describe the impact on those problems on daily living. Participants are invited to complete the PD-PROP on a quarterly basis, forming a longitudinal database. The unique structure of the PD-PROP, with its longitudinal verbatim data capture, enables a deeper understanding of these critically important issues for people with PD [2]. By quantifying the domains and subthemes of fear as a “most bothersome problem,” this study provides preliminary data for the relative prevalence of different fears experienced by PwP.

METHODS

RESULTS

Demographic information about the participants is shown in Table 1. Most reported age of onset after 50 (n = 213, 96.4%) and had been living with PD for 5 years or less (n = 143, 64.7%). Twenty-six categories of fears were identified, arranged into seven domains (Table 2 and Supplementary Table 1): Relationships/Social, Dependence, Prognosis/Progression, Employment, Financial, Personal Safety, Specific Symptoms. The most commonly reported fear category was uncertainty around disease progression (n = 60/225, 26.7%). For instance, one participant wrote, “This is actually the worst problem with my PD = fear of progression and the future.” Uncertainty regarding day-to-day variability (e.g., “good days vs bad days”) or fear about death/dying were somewhat less common, reported by only 8 (3.5%) and 10 (4.4%) verbatims respectively. Twenty-three verbatims (10.2%) expressed fear of becoming a burden on family members, and 23 (10.2%) reported worries of becoming socially isolated as a result of their PD diagnosis. For instance, one participant expressed concern about the potential for “loss of spouse relationship. It dwells in a corner of my mind most of the time.” Another wrote “I want my life back ...  . Now I’m a prisoner having meds delivered to me.”

With regard to specific symptoms, fear of cognitive impairment (n = 24, 10.7%) and fear of falling (n = 16, 7.1%) were the most commonly reported. Other reported motor fears included fear of episodic symptom emergence; tremor (n = 5, 2.2%) and fear of cramps/spasms (n = 10, 4.4%). Non-motor fears included fear of poor nocturnal sleep quality or overwhelming daytime sleepiness (n = 8, 3.5%) and fear of GI distress (n = 9, 4%) such as constipation or nausea.

DISCUSSION

In this online free-text database, we identified 26 categories of reported fears and worries as a “most bothersome problem” resulting from PD. Even though the participants reported a short duration of PD on average, many fears were expressed. This provides an important lesson for clinicians, who may focus on symptom management but fail to recognize that fear itself may be the most troublesome aspect of PD. Direct inquiry on this topic may open an important therapeutic avenue for patients.

The most commonly reported fears involved uncertainty around disease progression, fear of cognitive impairment, and concerns about becoming a burden on others. These findings are consistent with other data on quality of life and psychosocial burden in PD [10, 11] and in other chronic diseases [12, 13]. For instance, fear of progression was found to be prevalent in hospitalized people with PD [11] and appears to be associated with lower self-efficacy for managing chronic illness. Similarly, in a focus group study of people with primary brain tumors [14], themes included relational concerns, disease-specific symptoms, and existential concerns about the future. Interviews with people with dementia and their caregivers [15] identified discussions of the future and loss of independence as major themes. Acknowledging and addressing fear and uncertainty is a core tenet of neuro-palliative care [16, 17], and palliative interventions that allow patients to share their own stories with others [18] may reduce fears and increase hope, as noted by a few respondents in our study. Our findings on the range of fears experienced by people with PD can guide health care providers in inquiring about fears, connecting with patients and providing support to best care for patients with PD.

To our knowledge, this is the first large unstructured response study of fears in PD; the identified domains ranged from specific symptoms to existential concerns of the future. Major strengths of the PD-PROP database used in this study include the large nature of the PD-PROP and the open-ended question format, which allows participants to self-prioritize their “most bothersome problems.” This is in contrast to other qualitative studies of fears or anxieties, which traditionally rely on an face-to-face interactions to prompt participants and may inadvertently introduce a degree of bias into patient responses, wherein participants may respond in ways they feel socially appropriate [19]; by contrast, the online self-directed nature of PD-PROP enables participants to express themselves unmediated by the presence of others. In other words, the design of PD-PROP centers patient perspective, consistent with the growing recognition of the importance of patient engagement in research. Of note, the framework methodology used in this analysis differs from the machine-learning approach employed in other analyses of PD-PROP, demonstrating the value of triangulating qualitative and quantitative methods in understanding complex conditions like PD. Moreover, the fears identified in this sample can be validated against the wider PD-PROP dataset or other large online datasets such as internet forums or social media [20–22].

Nevertheless, some important caveats should be noted. Like other longitudinal cohorts of PwP, the FI cohort from which PD-PROP derives is predominantly English-speaking, non-Hispanic white, and well-educated [23]; targeted recruitment strategies have been implemented to increase enrollment of underrepresented populations [24], though these were not yet in place when the data was extracted for this analysis. Although data on fears in PD are limited, other cohorts of older adults reveal differing impact of race/ethnicity on fear of falling, with some data suggesting Black participants have a greater fear of falling [25] and other data suggesting that fear of falling is reduced in Black participants [26]. Additionally, the nature of the data extraction does not allow us to estimate the overall frequency of fears as most bothersome problems in PD, nor the correlation between fears and demographic or clinical characteristics. For instance, self-perception and existential anxieties may be impacted by age of onset [27], gender identity [28, 29], or disease duration [30]. Further, underlying mood disorder (e.g., depression or generalized anxiety) or medication use may also influence patient perceptions and fears. Additionally, fear types may change over time; the sample included in this project only included four instances where a single individual provided multiple fear-based verbatims. We did not perform a longitudinal analysis to identify how fear types and their priority as bothersome problems in PD may change over time. Future research, leveraging the larger FI study or other cohorts, may be able to better understand the longitudinal nature of fear in PD, as well as the interplay between patient self-report and these clinical/demographic characteristics. For instance, a natural language processing algorithm could extract fear-based topics more systematically from a large data source, providing a more comprehensive assessment of fear in this patient population.

In conclusion, fears in PD are wide-ranging and both existential and related to specific symptoms. In some patients, fear can itself be the most bothersome aspects of PD. Further analysis is needed to understand the demographic, clinical correlates and further impacts of PD fears. The range of fears quantified in the PD-PROP can be used to design educational materials and interventions to lessen the psychosocial burden of PD.