Jumpstart Guide for Dementia Care Planning

(PICSI-M Trial)

Recruiting at 2 trial locations

Overseen By Jessica Walsh

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: University of Washington

Disqualifiers: Non-English speaking, Legal concerns, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

1800 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to enhance communication between doctors, patients with memory issues, and their families. It tests a "Jumpstart Guide" designed to assist doctors in discussing the patient's healthcare goals. Patients will be divided into two groups: one where doctors use the guide and one where they do not, to determine if the guide improves conversations. Individuals with memory problems receiving outpatient care at UW Medicine clinics may qualify if their medical records document Alzheimer's or dementia. As an unphased trial, this study provides a unique opportunity for patients to help improve healthcare communication strategies.

Do I need to stop my current medications for this trial?

The trial protocol does not specify whether you need to stop taking your current medications. It seems focused on improving communication rather than changing medication regimens.

What prior data suggests that the Jumpstart Guide is safe for improving communication in dementia care planning?

Research shows that the Jumpstart Guide improves communication between doctors, patients with memory problems, and their families. As a tool rather than a medicine or medical procedure, it poses no physical health risks.

In past studies, researchers adjusted the Jumpstart Guide to better meet the needs of people with dementia and their caregivers. Doctors provided positive feedback, noting that it facilitates easier and more effective conversations about healthcare goals.

Since it is a communication aid and not a medical treatment, there are no reports of negative effects. It serves as a safe and helpful tool to enhance the quality of discussions and care planning. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Jumpstart Guide for dementia care planning because it offers a fresh approach to managing care discussions. Unlike traditional methods that may not consistently address important documentation and care goals, the Jumpstart Guide uses automated methods to summarize key documents like POLST forms, advance directives, and DPOA documentation. Additionally, it provides practical tips for clinicians to facilitate meaningful discussions about care goals with patients and their families. This innovative approach aims to streamline and improve the planning process, potentially leading to more personalized and effective care for individuals with dementia.

What evidence suggests that the Jumpstart Guide is effective for improving dementia care planning?

Studies have shown that the Jumpstart Guide, tested in this trial, improves communication about healthcare goals. Participants may receive the Jumpstart Guide, which research indicates leads to more recorded discussions about care goals in patients' electronic health records. When healthcare providers use the guide, they are more likely to have important conversations with patients about their healthcare wishes. By offering tips and summaries of important documents like advance directives, the guide simplifies these discussions. This can be especially helpful for patients with memory problems and their families. ^{1 3 6 7 8}

Who Is on the Research Team?

Erin Kross, MD

Principal Investigator

University of Washington

Are You a Good Fit for This Trial?

This trial is for patients aged 55+ with memory issues and chronic conditions like cancer, heart failure, or diabetes. It's also for their caregivers who are involved in their care. Participants must speak English and be treated at a UW Medicine clinic. Clinicians from UW Medicine caring for these patients can join too.

Inclusion Criteria

I am 55 years old or older.

(Interviews) Identified as clinician of record for an enrolled patient in the trial and received a Jumpstart guide

If have ADRD and not followed by a primary care clinician at UW Medicine but are followed by a subspecialist, must also have an ICD-10 code for one or more of seven chronic conditions used by the Dartmouth Atlas, relevant for the specialist they see, to ensure that goals-of care discussions are applicable for these specialists in the care of the enrolled patient

Exclusion Criteria

I am unable to give consent and do not have someone to do it for me.

I do not have physical or mental limitations that prevent me from completing study tasks.

Non-English speaking

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

1-2 weeks

Randomization and Intervention Preparation

Patients are randomized to either the Jumpstart intervention or usual care. For those in the intervention arm, a Jumpstart Guide is created using EHR data.

1 week

Intervention Delivery

Jumpstart Guides are delivered to clinicians 1-2 days before the patient's target visit to facilitate goals-of-care discussions.

1-2 days

Survey Follow-up

Patients and family members complete surveys at 1, 3, and 12 months after the target visit to assess outcomes such as palliative care needs and psychological symptoms.

12 months

Qualitative Interviews

At the end of the follow-up period, intervention patients and family members are invited to participate in interviews to evaluate the intervention.

20-30 minutes per interview

What Are the Treatments Tested in This Trial?

Interventions

• Jumpstart Guide

Trial Overview Researchers are testing the 'Jumpstart Guide' to see if it helps clinicians discuss healthcare goals more effectively with patients having memory problems and their families. They'll compare outcomes between those using the guide and those not to measure its impact on communication.

How Is the Trial Designed?

Group I: Jumpstart Guide Experimental Treatment 1 Intervention

The Jumpstart Guide is developed using automated methods. It summarizes the presence/absence of POLST, advance directives and DPOA documentation. The Jumpstart Guide also provides tips for conducting discussion about goals of care.

Group II: Usual Care Active Control 1 Intervention

Clinicians of patients in the Usual Care arm will not receive a Jumpstart Guide.

Who Is Running the Clinical Trial?

University of Washington

Lead Sponsor

Trials

1,858

Recruited

2,023,000+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

Published Research Related to This Trial

The STOPP/START toolkit was effectively used to review and reduce inappropriate prescriptions among 86 older psychiatric in-patients with dementia, leading to a 7% reduction in comorbidities and an 8% decrease in the number of prescriptions.

Commonly prescribed inappropriate medications included benzodiazepines, antipsychotics, and opiates, while statins, calcium, and vitamin D supplements were often unprescribed, highlighting the need for better medication management in this population.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Completed audit cycle to explore the use of the STOPP/START toolkit to optimise medication in psychiatric in-patients with dementia. Aziz, VM., Hill, N., Kumar, S.[2020]

A new mat and flashcard tool has been developed to assist individuals with dementia in participating more actively in their care decisions.

This innovative approach aims to enhance communication and engagement for people with dementia, potentially improving their overall care experience.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Cards on the table. [2019]

A survey of 161 dementia care mappers from the US and UK revealed significant differences in the usage and satisfaction levels of dementia care mapping (DCM) between the two countries, indicating a need for tailored approaches in implementation.

Despite these differences, both groups reported positive impacts of DCM on their attitudes towards dementia care, although time constraints were a common challenge faced by mappers in both regions.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Cross-cultural comparison of the perceptions and experiences of dementia care mapping "mappers" in the United States and the United Kingdom. Douglass, C., Keddie, A., Brooker, D., et al.[2016]

The guidelines for managing dementia in community-dwelling patients were tested by 17 general practitioners on 119 patients, highlighting the importance of addressing psychosocial issues alongside medical care.

About 50% of the patients benefited from the guidelines, indicating that they are a useful resource for general practitioners in improving dementia care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The management of dementia in general practice. A field test of guidelines. Bridges-Webb, C., Wolk, J., Britt, H., et al.[2007]

The book serves as a practical toolkit for dementia care, providing essential resources, case studies, and reflective scenarios to aid professionals in the field.

It is also beneficial for individuals working in gerontology, making it a versatile resource for those involved in elder care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Sexuality and Dementia: a guide for all staff working with people with dementia Carole Archibald Sexuality and Dementia: a guide for all staff working with people with dementia Second The Dementia Services Development Centre Stirling University 49 £12.00 1 85769 1865 1857691865 [Formula: see text]. [2019]

This project will evaluate the effectiveness of quality improvement collaboratives (QICs) in enhancing adherence to non-pharmacological dementia care guidelines among 30 clinicians over an 18-month period, aiming to bridge the gap between evidence and practice.

The study will involve direct input from people with dementia and their carers, ensuring that the implementation strategies are relevant and focused on improving care satisfaction and outcomes, which could lead to better practices in dementia care across Australia.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Agents of change: establishing quality improvement collaboratives to improve adherence to Australian clinical guidelines for dementia care. Cations, M., Crotty, M., Fitzgerald, JA., et al.[2019]

The book is designed specifically for caregivers, relatives, and friends of individuals living with dementia, providing valuable insights and support.

It is available for free download from Care UK's website, making it easily accessible and user-friendly for those seeking information on dementia care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Listen, Talk, Connect: Communicating with People Living with Dementia Listen, Talk, Connect: Communicating with People Living with Dementia 68pp Care UK [Formula: see text]. [2019]

The 'Care to Plan' (CtP) online resource was developed to provide tailored support recommendations for dementia caregivers, and it was found to be simple, easy to understand, and effective in meeting user needs based on feedback from 30 caregivers.

Despite its feasibility and utility, caregivers suggested that additional features, like video introductions, could enhance the tool's effectiveness in guiding them through the support options available.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Care to Plan: An Online Tool That Offers Tailored Support to Dementia Caregivers. Gaugler, JE., Reese, M., Tanler, R.[2022]

The article presents a good practice guide for prescribing anti-dementia medications, created collaboratively by a lead nurse and a clinical pharmacist, ensuring a comprehensive approach to treatment.

This guide consolidates current evidence into a concise format, aiming to assist healthcare practitioners in making informed prescribing decisions for dementia care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A guide to prescribing anti-dementia medication. Kennedy, S., Sud, D.[2016]

The scoping review included 88 studies on dementia care implementation, revealing that training and education for professionals were the most common strategies (94%), while financial strategies were rarely reported (15%).

Barriers to effective dementia care implementation included organizational factors like time constraints, while supportive leadership was identified as a key facilitator; however, there is a lack of robust evidence on effective strategies, particularly in primary care and hospital settings.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Dissemination and implementation research in dementia care: a systematic scoping review and evidence map. Lourida, I., Abbott, RA., Rogers, M., et al.[2022]

Citations

1. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC11226381/

Applying Human-centered Design to Adapt the Jumpstart ... Using human-centered design (HCD), we adapted the Jumpstart Guide for use with PLWD and their caregivers. We conducted qualitative interviews with clinicians ...

2. clinicaltrials.gov clinicaltrials.gov/study/NCT05596760

Study Details | NCT05596760 | Promoting Goals-of-Care ... The Jumpstart guide is developed from EHR data, using automated retrieval routines to summarize the presence or absence of Physician Orders for Life Sustaining ...

3. withpower.com withpower.com/trial/phase-lung-diseases-11-2022-298c4

Jumpstart Guide for Dementia Care Planning (PICSI-M Trial) The goal of this clinical trial is to improve communication among clinicians, patients with memory problems, and their family members.

4. centerwatch.com centerwatch.com/clinical-trials/listings/condition/713/Memory%20Problems?page=3

Memory Problems Clinical Research Trials Jumpstart is designed to promote and guide goals-of-care discussions for patients with serious illness through suggestions and "tips" on the Jumpstart Guide.

5. jamanetwork.com jamanetwork.com/journals/jamanetworkopen/fullarticle/2790602

Efficacy of a Communication-Priming Intervention on ... The Jumpstart intervention resulted in a significant increase in electronic health record–documented goals-of-care discussions between randomization and ...

6. cms.gov cms.gov/priorities/innovation/innovation-models/guide

Guiding an Improved Dementia Experience (GUIDE) Model The GUIDE Model focuses on comprehensive, coordinated dementia care and aims to improve quality of life for people with dementia, reduce strain on their unpaid ...

7. pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov/38801253/

Applying human-centered design to adapt the Jumpstart ... Using human-centered design (HCD), we adapted the Jumpstart Guide for use with PLWD and their caregivers. We conducted qualitative interviews with clinicians ...

8. researchgate.net researchgate.net/publication/366519016_US_clinicians'_perspectives_on_advance_care_planning_for_persons_with_dementia_A_qualitative_study

US clinicians' perspectives on advance care planning for ... Applying human-centered design to adapt the Jumpstart Guide for goals-of-care discussions in persons living with dementia. Article. May 2024; J AM GERIATR SOC.