FormalPara Key Summary Points

Why carry out the study?

How patients experience a disease is shaped by hidden factors such as attitudes, beliefs, and social structures that are often culturally and geographically distinct.

By conducting ethnographic interviews with patients diagnosed with early-stage Parkinson’s disease, family members, neurologists, and movement disorder specialists, we gained insight into how people with early-stage Parkinson’s disease understand their disease and make decisions about their health and use of healthcare services and therapies.

What was learned from the study?

We identified five thematic findings that demonstrate how people with early-stage Parkinson’s disease come to accept their diagnosis; how they foresee their future experience of Parkinson’s disease; how they are likely to respond to the potential arrival of disease-modifying therapies now in clinical development; and how ethnicity, social, class, and gender shape the lived experience of patients with early-stage Parkinson’s disease in the USA and Germany.

A more holistic understanding of the patient experience of early-stage Parkinson’s disease can enhance existing qualitative and quantitative research by providing additional insights into how the symptoms of early-stage Parkinson’s disease impact patients’ health-related quality of life and broader social lives.

Introduction

Parkinson’s disease is one of the world’s fastest growing neurodegenerative disorders and is currently incurable [1]. Characterized by the loss of dopamine neurons in the substantia nigra pars compacta (SNc), clinical Parkinson’s symptoms include motor deficits of tremor, rigidity, gait disturbance, and general slowness of movement [2]. Reported non-motor symptoms include autonomic and gastrointestinal problems, olfactory and sleep deficits, anxious and depressive symptoms, and cognitive impairment, among others [3, 4]. Starting with mild symptoms, the disease gradually progresses to a level where daily activities and quality of life are negatively impacted [5].

Current standard treatment for Parkinson’s disease involves pharmacological therapies (e.g., levodopa, type-B monoamine oxidase inhibitors, dopamine agonists) [6], surgical approaches (e.g., deep brain stimulation) [7], and training programs such as physiotherapy [8]. These treatments focus primarily on helping people with Parkinson’s disease manage their symptoms and daily activities. Compounds currently in clinical development, by contrast, seek to modify disease progression. If approved, these novel disease-modifying therapies (DMTs) are expected to shift the paradigm of care by intervening in the natural history of the neurodegenerative disease process [9].

In comparison with research on later stages of the disease, research on early-stage Parkinson’s disease remains relatively limited. The need for further research is especially pressing given that most therapies with the potential to slow progression are currently being studied in early-stage Parkinson’s disease [10, 11]. Recent efforts to improve our understanding of early-stage Parkinson’s disease have drawn on patient interviews [12,13,14]. In one study, researchers interviewed people with Parkinson’s disease and their family members to identify the following cardinal symptoms of early-stage Parkinson’s disease: bradykinesia, slowness (notably in the form of functional slowness), tremor, rigidity/stiffness, effects on mobility (particularly fine motor/dexterity and subtle gait abnormalities), fatigue, depression, changes in sleep/dreams, and pain [10]. A related qualitative study concluded that tremors, stiffness, rigidity, and fatigue are also characteristic of early-stage Parkinson’s disease, with the greatest impact being felt around eating and drinking, exercise, sport, mental health, and family life [15].

This study builds on existing qualitative research by examining the patient experience of early-stage Parkinson’s disease from a holistic perspective we term “patient life experience.” Rather than equate patient experience narrowly with symptoms and their impacts, we used in-person and remote ethnographic interviews to explore the attitudes, beliefs, and social structures that shape how people understand and adapt to life with early-stage Parkinson’s disease. We also explored how people with early-stage Parkinson’s disease make decisions about their health, well-being, and treatment, focusing on four aspects of patient life experience in particular: (1) how people with early-stage Parkinson’s disease come to accept their diagnosis; (2) how they conceptualize their future life with the disease; (3) which assumptions are likely to inform how they respond to new treatment options; and (4) how race/ethnicity, social class, and gender impact the lived experience of early-stage Parkinson’s disease.

Ultimately, this study aimed to understand how the patient experience of early-stage Parkinson’s disease is shaped by hidden factors such as attitudes, beliefs, and social structure that are often culturally and geographically distinct. We used our qualitative research to identify five key thematic findings and develop a patient life experience pathway of early-stage Parkinson’s disease. This framework can provide insight into how the clinical features of early-stage Parkinson’s disease become meaningful to patients in the context of social life, family relations, and subjective well-being. Our research can also enable the efforts of physicians, patient organizations, and family members to improve the quality of care and support that people with early-stage Parkinson’s disease receive.

Methods

Study Design

This mixed-method study followed a qualitatively driven sequential design in accordance with the US Food and Drug Administration (FDA) guidance for the collection of patient experience data [16]. Interviews were conducted with people living with early-stage Parkinson’s disease, family members, and neurologists and movement disorder specialists. Interviews took place in-person or via online video with participants in the USA and Germany. In-person interviews allowed researchers to observe participants in their homes and to witness their daily lives. We coded and analyzed the interview data in a collaborative, iterative process before comparing the emergent themes with learnings from an exploratory review of the literature on early-stage Parkinson’s disease and the sociology of healthcare in the USA and Germany (with a particular focus on how experiences of health and illness are mediated by larger social structures and race/ethnicity, social class, and gender) [17]. Patient organization partners were crucial to the data analysis, providing substantive feedback and guidance on how to understand and articulate the experience of early-stage Parkinson’s disease from the patient’s perspective.

Taken together, this process produced a set of discrete findings into the lived experience of early-stage Parkinson’s disease. In a final step, we designed a quantitative survey instrument to assess the prevalence of those findings in a larger patient population. This self-administered electronic survey was fielded to an expanded sample in the USA and Germany.

The study received ethics approval for the USA and Germany from SolutionsIRB (protocol 2023-Nov-0165), and participants were required to complete consent forms before beginning the interview or survey. The study was performed in accordance with the Helsinki Declaration of 1964 and its later amendments. All researchers received ethics certification for work with human subjects in accordance with the Collaborative Institutional Training Initiative (CITI Program) or the Tri-Council Policy Statement (TCPS).

Participants

The study used convenience and purposive sampling [18]. Interview participants and survey respondents were identified through a variety of sources, including patient advocacy groups in the USA. Interview participants were also recruited by “snowballing” (opportunistic or nominated sampling), whereby people who had already taken part in an interview acted as referral agents [19]. Throughout the process, patient advocacy groups provided useful feedback on how to frame the study and its goals in language meaningful to participants.

For the interviews, 30 participants with early-stage Parkinson’s disease were included in the USA (n = 18) and Germany (n = 12). Inclusion criteria were (1) aged 18–80 years; (2) residents of the USA or Germany; (3) received a Parkinson’s disease diagnosis within the previous 5 years. To better understand the life experience of racially marginalized people with early-stage Parkinson’s disease in the USA, the study team explicitly sought out a meaningful sample of Black, Asian-American, and Hispanic/Latino participants. In both the USA and Germany, the study team also sought meaningful socioeconomic diversity among participants. As with clinical research in Parkinson’s disease, the barriers that drive disparities in care among racially marginalized and economically disadvantaged people in the USA and Germany also created obstacles for identifying participants for this study [20]. Family members or care partners of participants with early-stage Parkinson’s disease (n = 10, 5 each in the USA and Germany) were required to be at least 18 years old and to spend a minimum of 5 hours per week with the participant with Parkinson’s disease. The demographic and clinical characteristics of patient interview participants are summarized in Table 1.

Table 1 Demographic and clinical characteristics of ethnographic participants with Parkinson’s
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Ten neurologists and movement disorder specialists were included in the USA and Germany, five per country. These participants had between 3 and 35 years of professional experience and were required to see a minimum of 30 Parkinson’s disease patients per month, with at least 20% of those patients in Hoehn-Yahr stages 1–2.5.

For the quantitative survey, the inclusion criteria were (1) aged 18–80 years; (2) residents of the USA or Germany; (3) received a Parkinson’s diagnosis within the previous 5 years. The sample of 150 participants (split evenly across the USA and Germany) saw a natural distribution of age, gender, and race/ethnicity (the latter in the USA only).

Ethnographic Interviews

Ethnography was the study’s core method of data collection and analysis. Defined as a “process of learning about people by learning from them,” ethnography provides a unique view of participant behavior within a specific context [21, 22]. As a tool of qualitative health research, ethnography allows investigators to explore the specific beliefs, practices, and social circumstances that shape how people understand experiences of health, illness, and treatment [23].

The interview is the ethnographer’s most important data-gathering technique, helping researchers understand the issue at hand from the participant’s perspective [24]. In-person interviews are particularly effective because they allow researchers to triangulate what participants say with their own observations about the cultural, social, and economic circumstances of participants’ lives. The goal is to connect the dots between what is spoken and what can be reasonably inferred to develop a more holistic understanding of patient life experience.

For this study, trained interviewers used semi-structured interview guides tailored for each category of participant (person living with early-stage Parkinson’s disease, family member/care partner, healthcare practitioner); see Tables 2 and 3. These semi-structured interview guides enabled interviewers to explore key topics identified in advance, while also creating flexibility to follow the natural flow of conversation. Following standard practice in focused ethnography, the interview guides moved from general to specific. Topical questions were complemented by probes (e.g., “Could you tell me more about that?” or “What do other physicians typically do?”) to gain depth of exploration [25]. For many interviews, researchers spent time in participants’ homes and were able to tailor questions to participants’ daily lives and circumstances.

Table 2 Summary of interview structure for people with Parkinson’s and family members/care partners
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Table 3 Summary of interview structure for healthcare practitioners
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Qualitative Analysis

Each interview was audio-recorded and transcribed verbatim. These transcripts were used to analyze interview data in tandem with field notes documenting interviewers’ observations about the participant’s home environment and social and cultural context. This inductive process helped generate a holistic understanding of patients’ experience, coupling the physical, emotional, and psycho-social impact of early-stage Parkinson’s disease with a deep understanding of the external factors influencing how patients access healthcare in the USA and Germany.

We drew on grounded theory analysis methods to identify, characterize, and summarize patterns found across the data collected [26]. This iterative process began with immersion in the data, as we read and reread the interview transcripts and notes. The next step involved the coding of the interview data, followed by the triangulation of coded interview data with learnings from the literature review. The analysis progressed to the distillation of abstract generalizations, the explanation of patterns, and the development of preliminary interpretations. Following the constant comparative method of analysis, these interpretations were challenged and refined in a collaborative exchange among ethnographers and partners in patient advocacy organizations [27]. Ultimately, the patterns, themes, and interpretations gleaned from the interviews were used to develop five key thematic findings and a patient life experience pathway of early-stage Parkinson’s disease.

Survey Design

After identifying key thematic findings from the interviews, the study team developed a survey consisting of 25 questions to refine each finding and bolster the dataset for analysis. Most of these questions were fixed-response questions, along with two open-ended questions that invited participants to respond in their own words. Patient advocacy organizations were instrumental in ensuring that the survey questions were articulated in language that would be comprehensible to participants. The demographic and clinical characteristics of survey respondents are summarized in Table S1 in the electronic supplementary material. See supplementary Tables S2 and S3 for an overview of the survey questions and a selection of participant responses to open-ended questions.

Results

Thematic Findings Encapsulating the Lived Experience of Early-Stage Parkinson’s Disease

Each of these thematic findings is accompanied with an illustrative excerpt from the researchers’ ethnographic field notes. All names are pseudonyms.

People with Early-Stage Parkinson’s Disease Start Coming to Terms with Their Disease Before Receiving a Medical Diagnosis

Most participants in this study not only suspected they had Parkinson’s disease but also began coming to terms with their disease before receiving a medical diagnosis (Figs. 1 and 2). The ethnographic interviews revealed two common reasons for this timing. On the one hand, growing public awareness of Parkinson’s disease has made it easier for people to recognize the motor symptoms popularly associated with the disease. On the other hand, the long process of receiving a diagnosis creates ample opportunity for people to begin acclimating themselves to the idea of having Parkinson’s disease.

Fig. 1
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The key phases of living and milestone moments in the patient life experience pathway of early-stage Parkinson’s disease (PD)

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Fig. 2
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Conventional assumptions about how grief begins after diagnosis (above) and the earlier onset of grief among participants in this study (below)

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In the quantitative survey, participants reported waiting an average of 1.5 years from their initial visit with a healthcare practitioner to receiving a Parkinson’s disease diagnosis. Survey respondents identified misdiagnosis as the most common hindrance, followed by their own inability to distinguish Parkinson’s symptoms from other conditions. Interview participants also spoke frequently about the difficulty of finding healthcare practitioners who made them feel “heard,” especially women and racially marginalized participants in the USA.


Field Note Excerpt

“Antonio” came to accept his Parkinson’s disease long before receiving a diagnosis, recognizing in himself the same symptoms he had observed in his grandmother years earlier. Antonio’s experience might be described as intergenerational: coming to terms with his Parkinson’s disease meant revisiting the grief he experienced when learning to accept what had befallen the matriarch of his tight-knit Dominican family.

Looking back, Antonio now believes that his Parkinson’s experience began at age 27, when he was diagnosed with sleep apnea. These “first non-motor symptoms” were followed by shoulder pain and stiffness. But it was only when Antonio’s hand began shaking that he made the connection to his grandmother and to Parkinson’s disease. Three jobs and a busy family life prevented him from seeking medical attention for another year and half. When Antonio finally did see a neurologist, the news was no surprise. He had spent a year and a half coming to terms with his Parkinson’s disease, with his grandmother’s experience never far from mind.

Acceptance is Not a Finalized Achievement or End Goal, But a Cyclical Process

Many participants in this study did not experience acceptance of their disease as a one-off accomplishment. They instead cycled through distinct kinds of acceptance in response to changes in their condition (Fig. 3). In most cases, this cyclical process did not cause participants to doubt their Parkinson’s diagnosis. But making sense of each “new now” did change how they related to their disease and how they approached treatment.

Fig. 3
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The acceptance cycle as part of the patient life experience pathway of early-stage Parkinson’s disease

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We identified three phases of acceptance:

  • “Idle acceptance” People living with early-stage Parkinson’s disease have come to terms with their diagnosis and/or with the “new now” that defines their disease at the present stage of progression. But they are not motivated to engage actively with their Parkinson’s disease.

  • “Fighting acceptance” People living with early-stage Parkinson’s disease feel strongly invested in and motivated to engage with their Parkinson’s disease and explore new treatment options in the hopes of securing better outcomes.

  • “Maintaining acceptance” People living with early-stage Parkinson’s disease have found what works for them in terms of treatments, self-care, and social life. They are committed to doing what they can to preserve this balance.

The quantitative survey found that 100% of participants recall experiencing “fighting acceptance” and “maintaining acceptance” phases at least once since diagnosis. “Idle acceptance” was less conclusive, as the survey found just 1 in 5 participants recalled this phase, in comparison with 70% of interview participants. Methodological considerations may lie at the root of this discrepancy.


Field Note Excerpt

Olaf and his wife Sabine live in a quiet, leafy neighborhood on the outskirts of what used to be East Berlin. As Sabine is quick to point out, she and Olaf are a relatively recent couple. They have only been together for five years and moved into their present apartment—the first home they’ve ever shared—a year after Olaf’s diagnosis. For both Sabine and Olaf, the news was difficult, devastating even. But neither thought of ending the relationship. They decided instead to move in together.

Olaf described the first few years as something akin to nesting. He and Sabine worked together to build a life for themselves in their new home, while also “settling into” Olaf’s Parkinson’s disease. From the start, it was a process of trial and error with medication, work schedules, and personal space. But the effort created intimacy. Now in the “maintaining acceptance phase,” Olaf and Sabine are committed to doing whatever they can to hold onto the life they have.

People with Early-Stage Parkinson’s Disease “Live in the Moment” to Make the Future More Manageable

Many interview participants spoke about the necessity of “living in the moment” and “taking it day by day.” It would be easy to assume that expressions like these were rooted in a denial of typical Parkinson’s disease progression. For most participants, however, focusing on the present was less about ignoring the future than about making the future more manageable by imagining disease progression as incremental.

We saw a similar pattern in the quantitative results. When asked about how they think about the future, 75% of survey respondents selected “I focus most on living in the moment” or “I focus both on living in the moment and preparing for the future.” At the same time, 66% of survey respondents had primarily future-focused treatment goals (living longer, maintaining mobility and independence, or delaying disease progression). Taken together, the ethnographic insights and quantitative validation support the potentially contradictory finding that people with early-stage Parkinson’s disease seek both to “live in the moment” and act for the future.


Field Note Excerpt

The dead-end street where Anke and her husband Kevin live feels more like a village than a city. Close to the harbor, it is lined with brick row houses and small boats dry-docked for the season. Anke and Kevin had moved to the area only recently, and almost on a whim. Making inroads in the community was hard at first. Neighbors were cordial and polite, but deeper connections remained elusive.

That changed when Anke was diagnosed with Parkinson’s disease. The neighborhood came alive with sympathy, and new acquaintances quickly became good friends. For Anke, this support was crucial as she learned to live with Parkinson’s disease. “Now, a little more than a year after the diagnosis,” she told us, “my life isn’t over. It’s stayed consistently calm, in fact. There is time to get used to things—like not being able to twirl spaghetti on your spoon. With this attitude, you could even imagine living without legs. I’m exaggerating slightly, but you do get used to doing things a little differently—and just living in the moment.”

Slowing Disease Progression is a Primary Goal Driving the Actions of People with Early-Stage Parkinson’s Disease

Participants in this study spoke frequently about “slowing progression” when discussing their treatment goals. Among survey respondents, 83% indicated that slowing disease progression was equal to or more important than symptom alleviation. It is important to note, though, that participants were generally not referencing the potential for new disease-modifying therapies. Instead, they used the language of “slowing progression” to describe the perceived efficacy of what they were already doing to treat Parkinson’s disease—whether pharmaceuticals, natural remedies, speech and occupational therapy, diet, or exercise.


Field Note Excerpt

“At this point, I’m accepting what Parkinson’s disease is going to be. But I want to try to slow the progression. When I got the diagnosis, I started a very intense fitness regimen. I worked out five times a week, ran two miles a day, and lifted weights.”

“Supposedly vitamin B helps slow down progression, it kind of halts it. There’s a scientific theory behind it, I’m not sure what it is but I did a lot of research on it. Being in the medical field, I don’t know everything, but I talked to my neurologist and she said it won’t hurt to try because you flush out any extra B1.”

“I try to live in the moment and not think about Parkinson’s disease because avoiding stress is the best thing you can do to slow things down.”

People with Early-Stage Parkinson’s Disease Value Information That is Grounded in Lived Experience and Relevant to Their Stage of Disease Progression

Participants in this study were less interested in developing a comprehensive understanding of Parkinson’s disease than in accessing information that is (a) specific to their stage of disease progression and (b) drawn from other peoples’ lived experience. Qualitative analysis validated both points. On the one hand, 74% of participants indicated they were most motivated to seek new information at moments of acute need or transition. On the other hand, 92% of participants believed that experiential based sources of information are more valuable for learning about Parkinson’s disease than more traditional scientific resources.


Field Note Excerpt

Dhruv is a neurologist who has been practicing in the USA for over two decades. In this time, he observed a remarkable shift in the kinds of questions patients ask. “Reliable information is easier to get now,” he told us. “But information is never equal to knowledge, and it’s certainly not even close to wisdom.” Earlier in Dhruv’s career, the questions he tended to field during treatment conversations were largely factual. Some patients even asked for statistics. Today, however, most patients can easily go online to access whatever facts and figures Dhruv might be able to share. This does not mean that Dhruv’s input is any less useful to or sought-after by his patients. But the kind of input that patients value most has changed. As Dhruv recounted: “They say, ‘Doc, we’ve read about this. We know about this. But tell me, what do you think from your experience?’ That’s what patients are looking for.”

Patient Life Experience Pathway of Early-Stage Parkinson’s Disease

The thematic findings detailed above unfold against the backdrop of a linear chronology of clinical encounters and life events. We identified five discrete phases of living with Parkinson’s disease punctuated by four milestone moments (Fig. 1). The linearity of these clinical encounters and life events, however, frequently stood at odds with the lived experience of early-stage Parkinson’s disease. Particularly with regards to matters of grief and acceptance, participants often experienced their Parkinson’s disease as non-linear and even cyclical (Figs. 2–4). Taken together, the linear chronology of the clinical journey and the non-linear or cyclical nature of lived experience illustrate the patient life experience pathway of early-stage Parkinson’s disease.

Fig. 4
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A composite overview of the patient life experience pathway of early-stage Parkinson’s disease

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Discussion

Thematic Findings Encapsulating the Lived Experience of Early-Stage Parkinson’s Disease

People with Early-Stage Parkinson’s Disease Start Coming to Terms with Their Disease Before Receiving a Medical Diagnosis

A common assumption, both in the Parkinson’s disease literature and among healthcare practitioners interviewed for this study, is that people do not come to terms with their Parkinson’s disease until they receive a medical diagnosis [28]. For most participants in this study, however, receiving a diagnosis was less a revelation than a confirmation of what they had long suspected. As one participant observed, “You have to decide to go get your diagnosis.”

Participants in both the USA and Germany described coming to terms with their Parkinson’s disease while navigating their respective healthcare systems. In the USA, where healthcare is typically more expensive, participants who were employed were generally diagnosed more quickly and had easier access to diagnostic testing than unemployed participants. It is also well documented that racially marginalized people in the USA are less likely to be diagnosed with Parkinson’s disease than white people [29]. Potential contributory factors include access to insurance, patient mistrust in health care, and underreporting of symptoms [30]. In Germany, where health insurance is typically less expensive and more comprehensive than in the USA, “social capital” or “know-how” often played a more decisive role in accessing care than socioeconomic status alone [31]. It is not enough to have economic access to resources; one must also have the know-how to navigate the healthcare system and advocate for oneself [32].

Antonio’s story illustrates how a family history of Parkinson’s disease can be a factor that leads people to suspect they have Parkinson’s disease prior to a diagnosis. Given the widespread belief in the USA that Parkinson’s disease primarily affects white men, it is plausible that individuals from racially marginalized groups may place greater significance on family history when considering the possibility of having Parkinson’s disease [33]. But in this study, participants with and without family a family history suspected Parkinson’s disease prior to a diagnosis in roughly the same proportions.

Acceptance is Not a Finalized Achievement or End Goal, but Rather a Cyclical Process Responsive to Disease Progression

According to the linear logic of conventional patient journeys in qualitative health research, acceptance is typically understood to be a one-time achievement [34]. Only once a patient “truly” accepts their diagnosis, this argument goes, can treatment begin in earnest. Many participants in this study, however, experienced acceptance as a cyclical process of adapting to the progression of their disease. From a clinical perspective, understanding the acceptance cycle is important because patients may be more or less open to new therapies depending on where they are in the cycle. Participants in this study routinely described themselves as being actively engaged in their own care in the “fighting” and “maintaining acceptance” phases than in the “idle acceptance” phase.

In both the USA and Germany, socioeconomic factors played a role in how participants experienced the acceptance cycle. Participants who struggled to meet their basic needs tended to spend more time in “idle acceptance.” They had neither the time nor the energy necessary to move into “fighting acceptance.” Moving out of “idle acceptance” also required a sense of confidence in one’s ability to improve one’s life, a mindset that was easier to inhabit for participants who were not marginalized as a result of socioeconomics, gender, or race. For many German participants, inpatient multidisciplinary treatment (Parkinson’s Disease Multimodal Complex Treatment) shaped their experience of the acceptance cycle [35]. When participants felt they had entered a new stage of disease progression, many used these resources to recalibrate their approach to treatment.

As stated earlier, we saw a discrepancy between the interviews and the quantitative survey in whether participants recollected a period of “idle acceptance.” Methodological considerations may help account for this divergence. Ethnography creates time and space for participants to reflect on their experiences in a way that surveys do not. Nor do surveys allow for the building of rapport that can make it easier for participants to acknowledge difficult life details. For these reasons, we hypothesize that more people may experience this “idle acceptance” phase than the quantitative data suggest.

People with Early-Stage Parkinson’s Disease “Live in the Moment” to Make the Future More Manageable

Advice about “living in the moment” features prominently in the self-help literature on Parkinson’s disease, as a means of “‘taking control of one’s destiny’ rather than be controlled by the disease” [36]. Among participants in this study, however, “living in the moment” was less about controlling one’s destiny than about adopting a particular orientation to the future. “Living in the moment” allowed our participants to imagine disease progression incrementally—as a series of moments extending from a familiar present to a future that is unknown but less daunting by virtue of its connection to the present. Participants found comfort in believing the next stage of their disease would only be slightly worse than the present stage (and that they would have time to adapt). Living day by day also meant continually redefining what counts as quality of life. Participants took comfort here as well, acknowledging that in the future they might not be able to do everything that matters to them now (e.g., sports or travel) but that they would find new aspects of their lives to prioritize (e.g., being around family). US and German participants spoke about the value of “living in the moment” as a way of making the future feel more manageable at similar rates.

Understanding that “taking it one day at a time” helps people living with early-stage Parkinson’s disease prepare for the future is important for supporting their care. Participants in this study reported feeling alienated from family members who accused them of being “in denial” or healthcare providers who enjoined them to be “more proactive.”

Slowing Disease Progression is a Primary Goal Driving the Actions of People with Early-Stage Parkinson’s Disease

Interviewers did not ask participants directly about DMTs to avoid hypothetical speculation. When participants spoke about “slowing progression,” they were usually referencing current activities they believe contributed to their overall health-related quality of life. These activities included sports, speech therapy, diet, and sleep. In many instances, the language of “slowing progression” was likely a convenient shorthand for describing what it means to be proactive in the face of a progressive disease.

Participants in the USA and Germany expressed the goal of slowing disease progression at similar rates. And in both countries, participants facing economic hardship or other social disadvantages were more likely to feel they were not “doing enough” to slow their Parkinson’s progression. Whether “Rock Steady Boxing” in the USA [37] or group singing in Germany [38], participants who struggled to take part in the Parkinson’s disease-related activities on their radar were less likely to feel they were meeting their goals around slowing progression.

Understanding that many people with early-stage Parkinson’s disease already think about Parkinson’s care in terms of slowing progression means that the potential arrival of DMTs would not require patients to change how they approach treatment. Indeed, people with early-stage Parkinson’s disease may be most open to DMTs if they understand these new therapies as a complement to what they are already doing or as a new means of pursuing a familiar goal.

People with Early-Stage Parkinson’s Disease Value Information That is Grounded in Lived Experience and Relevant to Their Stage of Disease Progression

The role of information in early-stage Parkinson’s disease did not consistently follow the pattern of typical health information-seeking behavior [39], which generally follows a predictable arc from “less informed” to “more informed.” For participants in this study, information-seeking was often sporadic, opportunistic, or strategic. We observed two specific information needs: progression-specific information and experiential knowledge.

On the one hand, participants were often less interested in becoming better informed about Parkinson’s disease as such than in finding the information most relevant to their specific stage of progression. This preference was for many participants rooted in mental health concerns. Only engaging information that pertains to one’s present state of progression can help one avoid the potentially negative consequences of encountering information you are not mentally prepared to process. On the other hand, participants also expressed a desire for knowledge grounded in the lived experience of physicians, caregivers, and other patients. This experiential knowledge helped study participants feel comfortable applying decontextualized scientific information to their particular experience of Parkinson’s disease.

Not all participants, however, found it easy to access this kind of experiential knowledge, particularly from physicians. A majority of German study participants noted that the hierarchical nature of the doctor–patient relationship made it difficult to feel they were learning what their doctors “actually think.” In both the USA and Germany, moreover, the socioeconomic and racial inequalities that shape everyday life for many participants were also replicated in their interactions with their healthcare providers. Many US participants from racially marginalized backgrounds described feeling that they were not always “taken seriously” by healthcare providers, which often prohibited them from accessing the kinds of information they found most valuable.

Study Limitations

The strengths of this study include the depth of ethnographic engagement afforded by in-person interviews conducted by trained social scientists. The study adds rich context and patient-centric detail to ongoing qualitative research beyond what can be obtained through other methods. The study was limited, however, by the relatively small sample size when compared to other qualitative studies. Ethnographic research can also lack the breadth that allows quantitative studies to examine larger-scale trends and correlations with greater generalizability. Finally, ethnographic research carries inherent interpretive challenges, given that multiple interpretations are possible of the qualitative insights gathered in interviews with participants.

Conclusion

This study aimed to understand how patients experience the earliest stages of Parkinson’s disease using a holistic approach that complements existing qualitative research. The findings emphasize the importance of providing support and care for people living with early-stage Parkinson’s disease in four key areas. First, given that people with early-stage Parkinson’s disease actively seek ways to maintain long-term health and slow disease progression, they can benefit from resources to promote personal well-being, self-care, and quality of life. Patient organizations may play a key role here.

Second, many people with early-stage Parkinson’s disease value judgment and experience over scientific facts alone. For this reason, healthcare practitioners might at times consider tailoring their communication with patients to be more “experience-forward,” balancing the presentation of information with the sharing of an experiential perspective. Geographical context is fundamental in underlining or dampening the need for this kind of communication and should be taken into consideration by all healthcare practitioners and patient advocacy organizations.

Third, many people with early-stage Parkinson’s disease already see the value of slowing disease progression. As the treatment landscape may shift, supporting patients will mean helping them recognize new disease-modifying therapies as a potential complement to other kinds of therapies.

Finally, while it is well known that social determinants of health play a crucial role in how people with early-stage Parkinson’s disease access care, supporting these people also means acknowledging how race/ethnicity, social class, and gender can shape patient experience and create specific needs around communication and material support.