Decision Making Support for Parkinson's Disease

Overseen By Jiayun Xu

Age: 18+

Sex: Any

Travel: May Be Covered

Time Reimbursement: Varies

Trial Phase: Academic

Waitlist Available

Sponsor: Purdue University

No Placebo Group

Trial Summary

What is the purpose of this trial?

Persons with Parkinson's disease and family care partners are often unprepared to make difficult, future medical decisions. Earlier conversations about future medical decisions between persons with Parkinson's disease and family care partners are needed before communication and cognitive difficulties become severe. In this study, the investigators will pilot test a novel dyadic intervention to help persons with Parkinson's disease and family care partners make future medical decisions. The investigators hypothesize the intervention will be feasible and acceptable among persons with Parkinson's disease and family care partners.

Do I have to stop taking my current medications for this trial?

The trial protocol does not specify whether you need to stop taking your current medications.

What data supports the idea that Decision Making Support for Parkinson's Disease is an effective treatment?

The available research shows that Decision Making Support, also known as Advance Care Planning, is valued by both patients with Parkinson's Disease and their families. It helps them plan for future care needs, which is important as the disease progresses. Although many doctors agree on the benefits of creating specific plans for Parkinson's patients, only a small number of them actually use these plans in their daily practice. This suggests that while the treatment is seen as useful, it is not yet widely implemented. Compared to other treatments, Decision Making Support focuses on planning and preparing for future care, which can be crucial for managing the disease effectively. ^{1 2 3 4 5}

What safety data exists for decision-making support in Parkinson's Disease?

The provided research does not directly address safety data for decision-making support in Parkinson's Disease. However, it discusses related topics such as advance care planning, shared decision-making, and advance directives, which are important for managing Parkinson's Disease. These studies focus on the feasibility, acceptability, and implementation of decision-making support interventions, but do not provide specific safety data. ^{1 3 6 7 8}

Is the treatment 'Parkinson's medical decision making support' a promising treatment for Parkinson's disease?

Yes, Parkinson's medical decision making support is promising because it helps people with Parkinson's disease plan for their future care. It allows them to make important decisions about their treatment and care in advance, which can improve their quality of life. This support also helps families and healthcare providers understand and respect the wishes of the person with Parkinson's, making it easier to provide the right care at the right time. ^{1 2 3 9 10}

Research Team

Jiayun Xu

Principal Investigator

Purdue University

Eligibility Criteria

This trial is for English-speaking Parkinson's disease patients without dementia, who can navigate websites or have assistance to do so. They must have reliable phone or internet access and not have used the intervention resources before. Those with severe vision impairment even with glasses, or a low cognitive status score are excluded.

Inclusion Criteria

Have access to a reliable phone or internet connection

Does not have a diagnosis of dementia

Have access to an online connection through a smartphone, tablet, or computer device

Exclusion Criteria

You have already used the treatment before.

You scored lower than 28 on a test to check memory and thinking skills during a phone call.

You have trouble seeing even with glasses and can't read a newspaper.

Treatment Details

Interventions

• Parkinson's medical decision making support (Behavioral Intervention)

Trial Overview The study tests a new program designed to help Parkinson's patients and their caregivers prepare for future medical decisions. It involves early conversations about potential choices they may face as the disease progresses, aiming to ease decision-making before serious communication and cognitive issues arise.

Participant Groups

Group I: Parkinson's medical decision making support intervention group Experimental Treatment 1 Intervention

All participants will complete an online medical decision making intervention, lasting about 60 minutes, and complete pre and post surveys.

Who Is Running the Clinical Trial?

Purdue University

Lead Sponsor

Trials

239

Recruited

72,200+

Findings from Research

A qualitative study involving 33 people with Parkinson's disease and their relatives revealed that individuals with PD are generally reluctant to engage in advance care planning, preferring to focus on the future rather than the present.

Three main reasons for this reluctance were identified: limited awareness of advance care planning and Parkinson's disease, uncertainty about living with the condition, and complex decision-making processes, highlighting the need for health professionals to better educate and support patients in planning for their future care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Understanding how people with Parkinson's disease and their relatives approach advance care planning. Churm, D., Dickinson, C., Robinson, L., et al.[2022]

A systematic review of 27 studies highlighted the importance of individualized and timely advance care planning discussions for patients with parkinsonian disorders, emphasizing that these discussions should be initiated early and occur regularly.

The study identified eight effective components for optimal advance care planning, including the need for skilled professionals to lead discussions, early involvement of palliative care services, and support for family carers, which can enhance the overall care experience for patients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review. Nimmons, D., Hatter, L., Davies, N., et al.[2021]

A study involving 87 physicians in Germany revealed that while most agreed on the usefulness of Parkinson's disease-specific recommendations for advance directives (ADs), only 24% actually implemented these recommendations in their practice.

Consultations regarding PD-specific ADs were infrequent and brief, indicating a need for better integration of these guidelines into routine care to enhance advance care planning for people with Parkinson's disease.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Analysis of Parkinson's Disease Outpatient Counselling for Advance Directive Creation: A Cross-Sectional Questionnaire-Based Survey of German General Practitioners and Neurologists. Jensen, I., Bretschneider, A., Stiel, S., et al.[2022]

Patients with Parkinson disease (PD) and their care partners have varied personal definitions of advance care planning (ACP), highlighting the need for tailored approaches in clinical settings.

Barriers to engaging in ACP include patient-related factors, relationship dynamics, and healthcare system challenges, suggesting that interdisciplinary care teams should proactively address these issues to improve ACP integration into PD care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Framing advance care planning in Parkinson disease: Patient and care partner perspectives. Lum, HD., Jordan, SR., Brungardt, A., et al.[2020]

A study involving 104 participants with Parkinson's disease revealed that 76% were unaware of Advance Care Planning (ACP), although 69% expressed interest in learning more about it.

Despite low awareness, most participants had engaged in some form of planning, primarily practical rather than healthcare-related, indicating a need for healthcare professionals to proactively discuss ACP with patients and their families.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

How Do Patients With Parkinson's Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study. Churm, D., Dickinson, C., Robinson, L., et al.[2022]

The study aims to evaluate the feasibility of a shared decision-making (SDM) intervention for patients with advanced Parkinson's disease, focusing on its acceptability, implementation, and initial efficacy through a mixed methods design involving both patients and healthcare professionals.

The SDM intervention includes an Option Grid™ decision aid and a value clarification tool, which are designed to enhance patient involvement in treatment decisions, potentially leading to better-informed choices regarding advanced therapies.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Improving shared decision-making in advanced Parkinson's disease: protocol of a mixed methods feasibility study. Nijhuis, FAP., Elwyn, G., Bloem, BR., et al.[2023]

Individuals with Parkinson's disease (PD) are significantly more likely to have advance directives, such as durable power of attorney, compared to non-caregiver controls, with a likelihood increase of 4.08 times for durable power of attorney and 2.08 times for durable power of attorney for healthcare.

Caregivers of individuals with atypical parkinsonian disorders (APD) also show increased utilization of advance directives, being 1.58 times more likely to have a living will and 2.21 times more likely to have a durable power of attorney for healthcare than controls.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

End of life planning in parkinsonian diseases. Gillard, DM., Proudfoot, JA., Simões, RM., et al.[2020]

In a study involving 20 qualitative interviews with individuals living with Parkinson's disease, it was found that safety events related to medication errors are common and often perceived as more severe by patients than they are objectively assessed.

The research highlights the importance of understanding both the objective and subjective experiences of safety events, as patients may feel that minor errors are significant, especially if communication about these errors is poor.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Distinguishing objective from subjective assessments of the severity of medication-related safety events among people with Parkinson's disease: a qualitative study. Buetow, S., Henshaw, J., Cha, R., et al.[2012]

A significant number of people with Parkinson's disease in Germany have advance directives, but these documents often lack specific details regarding complications related to Parkinson's disease, highlighting a need for improvement.

A Delphi study involving 22 experts led to consensus on 14 out of 24 recommendations for Parkinson's disease-specific advance directives, emphasizing the importance of dopaminergic and non-oral therapy options, which should be integrated into patient counseling and advance directive development.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Consensus-Based Recommendations for Advance Directives of People with Parkinson's Disease in Regard to Typical Complications by German Movement Disorder Specialists. Klietz, M., Berndt, JM., Wegner, F., et al.[2020]

In a study involving dyads of people with advanced Parkinson's disease and their caregivers, decisions about health care and living preferences were made collaboratively, focusing on options like home services, assisted living, and hospice care.

The study found high decision quality among participants, indicated by low levels of decisional conflict and regret, suggesting that caregivers and patients can effectively navigate complex health care choices together.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Dyadic Decision-Making in Advanced Parkinson's Disease: A Mixed Methods Study. Habermann, B., Shin, JY., Shearer, G.[2021]

References

1. Switzerland pubmed.ncbi.nlm.nih.gov

Understanding how people with Parkinson's disease and their relatives approach advance care planning. [2022]

2. England pubmed.ncbi.nlm.nih.gov

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review. [2021]

3. Switzerland pubmed.ncbi.nlm.nih.gov

Analysis of Parkinson's Disease Outpatient Counselling for Advance Directive Creation: A Cross-Sectional Questionnaire-Based Survey of German General Practitioners and Neurologists. [2022]

4. United States pubmed.ncbi.nlm.nih.gov

Framing advance care planning in Parkinson disease: Patient and care partner perspectives. [2020]

5. United States pubmed.ncbi.nlm.nih.gov

How Do Patients With Parkinson's Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study. [2022]

6. England pubmed.ncbi.nlm.nih.gov

Improving shared decision-making in advanced Parkinson's disease: protocol of a mixed methods feasibility study. [2023]

7. England pubmed.ncbi.nlm.nih.gov

End of life planning in parkinsonian diseases. [2020]

8. England pubmed.ncbi.nlm.nih.gov

Distinguishing objective from subjective assessments of the severity of medication-related safety events among people with Parkinson's disease: a qualitative study. [2012]

9. Switzerland pubmed.ncbi.nlm.nih.gov

Consensus-Based Recommendations for Advance Directives of People with Parkinson's Disease in Regard to Typical Complications by German Movement Disorder Specialists. [2020]

10. United States pubmed.ncbi.nlm.nih.gov

Dyadic Decision-Making in Advanced Parkinson's Disease: A Mixed Methods Study. [2021]