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Table 3 Challenges in Parkinson’s disease care management design addressed in the CHAPS Model

From: Implementation fidelity of a nurse-led RCT-tested complex intervention, care coordination for health promotion and activities in Parkinson’s disease (CHAPS) in meeting challenges in care management

Challenges Examples of CHAPS Addressing the Challenges
Quality and Extent of Implementation [14]
Stakeholder Perceptions [20]
Lack of emotional support [28, 32] Emotional support through CHAPS nurse care manager coaching
Participants attended support groups
Participants felt they could talk to their nurse care manager
Need for tailored information [28, 32, 33] CHAPS nurse care managers:
• Provided CHAPS Assessment-driven education (verbal, written, digital)
• Recommended specific care interventions
• Personalized participant Notebook [18] with tailored education sheets
Participants read specific nurse care manager-supplied materials
Participants liked the Notebook feature of education sheets
Coping with multiple changes in care (unpaid care needs, medications, adaptive equipment) [33] Motivational collaborative problem-solving
CHAPS nurse care manager coaching
Participants reported CHAPS nurse care managers helped them manage their Parkinson’s disease and their health overall
More self-management [33, 34] CHAPS nurse care managers coached participants on self-care including My HealtheVet and Notebook use
Participant self-care actions and interactions with Notebook were documented
Participants reported:
• Medication self-management
• Knowing about Parkinson’s disease and when to contact Parkinson’s disease specialists
• Notebook benefits (helpful, useful, organizes information)
Parkinson’s disease specialists reported participant self-management improvement
More active role in decision-making [35] Participants prioritized problems with CHAPS nurse care manager
Collaborative problem-solving occurred
Participants prepared for provider appointments
Participants felt they could talk to their nurse care manager
More time to discuss the future, possible scenarios [33, 34] CHAPS nurse care managers:
• Made follow up telephone calls to participants
• Discussed Understanding Parkinson’s Disease, Preferences/Long term care planning, End of Life Resources a
• Added education sheets on above issues to personalized Notebooks
Participants completed advance directive/power of attorney for health care
Parkinson’s disease specialist appreciated nurse care manager spending more time talking to patients than is available in clinic
Health professional as single point of access for problem-solving directly or for multidisciplinary care and referrals [10, 34] CHAPS nurse care managers:
• Problem-solved collaboratively with participants
• Initiated care coordination and discussed multidisciplinary referrals
• Recommended topic/intervention to discuss with provider
Parkinson’s disease specialists noted helpfulness of the nurse care manager role
Continuity of contact needed [28, 32] Continuity achieved for some but not all participants; continuity interrupted by normal turnover complicated by hiring freezes
CHAPS nurse care managers noted consistent staffing is needed to build trust, facilitate collaboration, foster behavioral change, and support Notebook use
Better interdisciplinary collaboration [34] Facilitation of interdisciplinary communication using the Siebens Domain Management Model b
Care coordination through warm hand-offs
Monthly clinical huddles between nurse care managers and Parkinson’s disease specialists
Participants taking Notebook to provider appointments
Parkinson’s disease specialists reported CHAPS nurse care managers recommended care suggestions they agreed with (e.g., in clinical huddles, in documentation)
Competent, professional practice [32] Structured CHAPS Assessment with algorithms (embedded triggers) for problem/topic identification
Scheduled follow-up telephone calls for follow-through and proactive care
Problem/topic specific intervention protocols c
CHAPS nurse care managers gained knowledge/understanding about Parkinson’s disease
Parkinson’s disease specialists reported CHAPS nurse care managers provided relevant information and paid attention to detail
Variability of disease severity in Parkinson’s disease [6, 36, 37] CHAPS Assessment with embedded triggers for identification of problems/topics and their range of severity (e.g., physician referral for higher severity)
Problems/topics spanning early, mid to advanced Parkinson’s disease (e.g., Driving, Psychosis/Hallucinations a)
CHAPS nurse care managers agreed with care suggestions recommended by CHAPS Assessment (triggered by algorithms)
As disease progresses, anticipation of needs is required [33] Proactive telephone calls over time
CHAPS 6-month review and annual reassessments to screen for evolving problems
Participants aware of what Parkinson’s disease symptoms to watch for
Standardized models for Parkinson’s team-based care are needed [6, 9, 11,12,13, 29, 38] CHAPS Assessment with algorithms
Siebens Domain Management Model b
Participants prioritized problems with CHAPS nurse care manager
Problem/topic-specific intervention protocols c
Monthly clinical huddles of CHAPS nurse care managers and Parkinson’s disease specialists
My HealtheVet and Notebooks for self-care and team communication
Care partner included at participant’s request
Referrals to and collaboration with other disciplines
Communication through one shared electronic medical record
Overall stakeholder perceptions of CHAPS and its components were positive
Parkinson’s disease specialists and nurse care managers endorsed CHAPS (e.g., would refer other patients)
Importance of including patient perspective in team [6, 10] CHAPS nurse care manager elicited participant concerns about CHAPS problems/topics and other medical problems
Participants felt they could talk to the nurse care manager about their condition
Participant preferences guided Notebook coaching
Care partner stress to be considered [6] and care partner included in team [10, 11] Care partners participated in telephone calls and care coordination at participant request
Participants showed Notebook to care partner
Caregiver Packets sent d
Care partner responses to the Notebook included being impressed and reporting it was helpful/organized
  1. CHAPS – Care Coordination for Health Promotion and Activities in Parkinson’s Disease; Notebook – Siebens Health Care Notebook [18]
  2. a These are among the 31 CHAPS standard problems/topics
  3. b The Siebens Domain Management Model™ is an organizing framework with four domains: I Medical/Surgical Issues, II Mental Status/Emotions/Coping, III Physical Function, and IV Living Environment (© Hilary C Siebens MD 2005) [19]. Used with permission
  4. c Problem/Topic Intervention Protocol steps were: Assess further, Provide information, Problem solve collaboratively, Clinical referrals, and Community and social services referrals
  5. d Caregiver Packet included a self-administered Caregiver Strain questionnaire, a screen for Caregiver Mood (Personal Health Questionnaire-9), a resource list, and caregiver information sheets from Parkinson’s Disease Foundation