Assessment of unmet needs in the management of early-onset Parkinson’s disease

Patients with early-onset Parkinson’s disease experience a significant emotional burden that is exacerbated by unmet educational needs.

The development of interdisciplinary care is necessary for patients with Parkinson disease (YOPD) to meet often unmet emotional and educational needs, according to the results of a study published in college student.

PD is characterized as the fastest growing neurological disorder in the world, with an estimated 3.2 million disability-adjusted life years attributed to the diagnosis.

Previous research has indicated that patients with YOPD have difficulty navigating the healthcare system and accepting the impact of diagnosis and the associated complexities of symptom management on their daily lives. Maintaining employment, childcare, and meeting financial commitments were some of the day-to-day responsibilities noted as being affected by the diagnosis of PD.

“People with YOPD have different healthcare demands than their older counterparts. Yet the care offered is the same, which negatively impacts their health outcomes,” the study authors said.

“Although studies have indicated that there is a change in a person’s lived experience once diagnosed, [none] specifically looked at how a health service could potentially address these factors to improve the patient experience.

The researchers conducted an interpretative phenomenological analysis (IPA) to provide an in-depth exploration of the unmet support needs experienced by those diagnosed with YOPD. Data was collected by interviewing 4 Australian participants aged 49-61, 3 men and 1 woman, about their perceptions of the supports currently available. The COREQ criteria for reporting qualitative research were used to guide the study.

“IPA is a relatively new, but increasingly popular, approach to exploring lived experience and the meaning of explanations provided by participants,” they explained. “IPA achieves this by using 3 key foundations: phenomenology, hermeneutics and ideography.”

Among the study cohort, 3 participants were employed full-time at the time of diagnosis, and 1 participant was unable to continue their employment due to their diagnosis. The fourth participant was not formally employed but helped his partner run a small business and received a disability pension. Three participants had children, and 2 participants had children under the age of 15.

Several themes were identified through the analysis of participants’ responses to the interviews, including 4 clear general themes:

  • Prediagnosis of PD: denial
  • What is the next?
  • Knowledge is power, above all
  • Loss and acceptance of identity

Prediagnosis of Parkinson’s disease: denial

Interview responses indicated that each participant described noticing early symptoms of PD, such as tremor, micrographia, and stiffness, but either attributed them to something other than disease or ignored them altogether, although d others told them it could be MP. Age has played a major role in each person’s thought process about eliminating Parkinson’s as an option.

“Receiving a diagnosis of PD came as no surprise to the participants, but they were unable to come to terms with the diagnosis because it would interfere with their life as it was,” the study authors said. “The diagnosis caused all participants to engage in catastrophic thinking, instinctively thinking the worst.”

What is the next?

It was noted that receiving a diagnosis of PD affected all participants in a way that made them reconsider their current sense of self and question their future self, with each participant creating very bleak outcomes to varying degrees. All participants strongly emphasized that they did not know where to seek help or what to do next.

“The natural progression of acceptance of reduced quality and length of life is accelerated in someone diagnosed with a life-limiting disease such as YOPD. This concept is perhaps the most important aspect to understand the impact of YOPD – it highlights that a lot more life is taken from a person at a younger stage of life when diagnosed.

Knowledge is power, above all

Each participant said they searched the internet for information, and although they all wanted to know more about their symptoms, and subsequently their diagnosis, they all described feeling overwhelmed by the information. It has been noted that the lack of representation of younger people with Parkinson’s promotes feelings of loneliness.

Additionally, all participants described their fear of allowing YOPD to become a “thing” in their lives, attributing this to a lack of support and understanding of what it meant to live with YOPD and how it would affect their future.

“The data illustrated the innate desire to understand what the future holds after receiving a life-changing diagnosis, but also the fear that comes with it. There is a distinct feeling expressed by all participants in that they did not feel well supported in finding information or navigating the healthcare system.

Loss and acceptance of identity

Echoing past sentiments, one of the key messages conveyed by people with YOPD is that they could not relate to the generic representation of people with PD. Another concern expressed by participants is the public image associated with PD and how they do not identify with that image.

“All participants described feeling that their illness was a barrier to the ability to relate to people their own age or participate in activities that others their age would participate in. All participants managed to find their own path to find empowerment and acceptance and it is a crucial aspect of recovering from the initial shock of receiving the diagnosis and continuing to live with YOPD.

The researchers said the current study informs the development of interdisciplinary care for people living with YOPD tailored to the needs of this population. And that this research “gives voice” to the lived experience of people with YOPD and acknowledges their recommendations for innovative solutions.

They concluded that further longitudinal research could highlight the continued impact of living with YOPD and the experience of disease progression in this population.

Reference

Stephenson C, Flynn A, Overs A, Strickland K. Support needs of people with early-onset Parkinson’s disease: an interpretative phenomenological analysis. college student. Published online October 18, 2022. doi:10.1016/j.colegn.2022.09.016

About Antoine L. Cassell

Check Also

Hello Leaders lights the spark in elderly care

Since its launch in early October, Hello leaders has provided decision makers in the aged …