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Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

ABSTRACT: BACKGROUND:Living with Parkinson disease (PD) is complicated by an unpredictable disease course which can delay planning for future needs. This study explores patient and care partner needs related to future planning using a palliative care framework with physical, psychological, social, cultural, end-of-life, and ethical aspects of care in PD to guide analysis. METHODS:Secondary analysis of patient and care partner interviews from a randomized clinical trial comparing interdisciplinary outpatient palliative care versus standard care for individuals with PD and care partners in an academic setting. Sixty participants were interviewed (30 patients and 30 care partners) about needs related to future planning. Team-based thematic analysis was used to identify key themes. RESULTS:Many care partners and patients living with PD described a desire for information about what to expect and how to plan for the future. Participants posed multiple questions about PD progression and devised the metaphor of a "roadmap" as a guide for decision making and planning. When exploring the concept of a PD roadmap, five themes emerged: (I) desire for a comprehensive tool for future planning, such as a roadmap, (II) care partner preferences for specific future planning, (III) PD-related life changes as opportunity for future planning and decision-making, (IV) cues from family, peers, and medical professionals about "location" on the roadmap, and (V) opportunities and challenges to integrating a PD roadmap into patient-centered care. CONCLUSIONS:Patients and care partners described key needs related to future planning that can inform a comprehensive roadmap to assist with education, communication, and decision making. A roadmap tool can promote individualized anticipatory guidance and multidimensional shared decision-making discussions between patients, care partners, and the healthcare team related to PD progression.

SUBMITTER: Jordan SR

PROVIDER: S-EPMC7408313 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

Jordan Sarah R SR Kluger Benzi B Ayele Roman R Brungardt Adreanne A Hall Anne A Jones Jacqueline J Katz Maya M Miyasaki Janis M JM Lum Hillary D HD

Annals of palliative medicine 20200206 Suppl 1

<h4>Background</h4>Living with Parkinson disease (PD) is complicated by an unpredictable disease course which can delay planning for future needs. This study explores patient and care partner needs related to future planning using a palliative care framework with physical, psychological, social, cultural, end-of-life, and ethical aspects of care in PD to guide analysis.<h4>Methods</h4>Secondary analysis of patient and care partner interviews from a randomized clinical trial comparing interdiscip ...[more]

PMID: 32036671

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Project description:Rationale & objectiveOlder patients with advanced chronic kidney disease (CKD) use intensive care at the end of life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non-dialysis-dependent population.Study designIn-person interviewer-administered surveys of patients 70 years and older with non-dialysis-dependent CKD stage 4 or 5 and their self-identified care partners.Setting & participants42 participants (31 patients, 11 care partners) at 2 clinical sites in greater Boston.OutcomesCompletion of advance directives and self-reported perceptions, preferences, and experiences of ACP.Analytical approachDescriptive analysis of patient and care partner surveys. McNemar test analysis to compare patient and care partner responses.ResultsMost patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians' judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with 2 hypothetical scenarios (stroke/heart attack or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team.LimitationsSingle metropolitan area; most patients did not identify a care partner; nonresponse bias and small sample size.ConclusionsPatients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.

Project description:BackgroundDespite the perceived ethical, personal and health service benefits of advance care planning (ACP), the extent to which older and seriously ill Australian inpatients have considered future health decisions remains uncertain. This study aimed to determine in a sample of older and seriously ill inpatients, the proportion who had: 1) engaged in four advance care planning (ACP) activities; 2) not engaged in ACP activities but wanted to; and 3) reasons why they had not engaged.MethodsCross-sectional face-to-face standardised interview survey with inpatients in a tertiary referral centre who were either: aged 80+ years; aged 55+ years with progressive chronic disease(s); or judged by treating clinicians as having a life expectancy of less than 12?months. Patients indicated whether they had engaged in four ACP activities: (1) appointed medical substitute-decision-maker(s), (2) recorded end-of-life wishes in an advance directive or care plan; and talked about their end-of-life wishes with their: (3) support persons and/or (4) doctors. Patients who had not engaged in activities were asked whether they wished this to occur and reasons why.ResultsOne hundred eighty-six inpatients consented to the study (80% of approached). Of these, 9% (n?=?16) had engaged in four ACP activities; 27% (n?=?50) had not engaged in any. Half (n?=?94, 52%) had appointed a medical substitute-decision-maker, 27% (n?=?50) had recorded wishes in an advance directive or care plan, 51% (n?=?90) had talked about their end-of-life wishes with support persons and 27% (n?=?48) had talked with their doctor. Patients who wanted to, but had not, engaged in the four ACP activities were unaware they could record wishes or appoint decision-makers, or indicated providers had not initiated conversations.ConclusionRelatively few inpatients had engaged in all four ACP activities. More inpatients had discussed end of life issues with family and appointed substitute decision makers, than completed written documents or talked with doctors. Community education and a more active role for community and hospital-based providers in supporting patients and families to collaboratively resolve end-of-life decisions may increase the probability wishes are known and followed.

Project description:OBJECTIVE:To test effects on care quality of Chronic Care Model-based Parkinson disease (PD) management. METHODS:This 2-group stratified randomized trial involved 328 veterans with PD in southwestern United States. Guided care management, led by PD nurses, was compared to usual care. Primary outcomes were adherence to 18 PD care quality indicators. Secondary outcomes were patient-centered outcome measures. Data sources were telephone survey and electronic medical record (EMR). Outcomes were analyzed as intent-to-treat comparing initial and final survey and repeated-measures mixed-effects models. RESULTS:Average age was 71 years; 97% of participants were male. Mean proportion of participants receiving recommended PD care indicators was significantly higher for the intervention than for usual care (0.77 vs 0.58) (mean difference 0.19, 95% confidence interval [CI] 0.16, 0.22). Of 8 secondary outcomes, the only significant difference of the changes over time was in the positive Patient Health Questionnaire-2 depression screen for intervention minus usual care (-11.52 [95% CI -20.42, -2.62]). CONCLUSION:A nurse-led chronic care management intervention, Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS), substantially increased adherence to PD quality of care indicators among veterans with PD, as documented in the EMR. Of 8 secondary outcomes assessed, a screening measure for depressive symptomatology was the only measure that was better in the intervention compared to usual care. More telephone calls in CHAPS were the only utilization difference over usual care. While CHAPS appears promising for improving PD care, additional iterative research is needed to refine the CHAPS model in routine clinical care so that it measurably improves patient-centered outcomes (NCT01532986). CLASSIFICATION OF EVIDENCE:This study provides Class I evidence that for patients with PD, CHAPS increased adherence to PD quality of care indicators.

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Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

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Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

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