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

Connor, Karen I.; Siebens, Hilary C.; Mittman, Brian S.; Ganz, David A.; Barry, Frances; McNeese-Smith, Donna K.; Cheng, Eric M.; Vickrey, Barbara G.

doi:10.1186/s12883-021-02481-5

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]
THEME 1: UNMET NEEDS (IDENTIFIED BY PATIENT AND/OR CARE PARTNER)
Lack of emotional support [28, 32]	◆ Emotional support through CHAPS nurse care manager coaching ◆ Participants attended support groups
Lack of emotional support [28, 32]	○ 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
Need for tailored information [28, 32, 33]	○ 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
More self-management [33, 34]	○ 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
More active role in decision-making [35]	○ 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
THEME 2: SUGGESTIONS FOR PROVIDERS (IDENTIFIED BY PATIENT AND/OR CARE PARTNER)
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
Continuity of contact needed [28, 32]	○ 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
Better interdisciplinary collaboration [34]	○ 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
Competent, professional practice [32]	○ 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
THEME 3: PATIENT CHARACTERISTICS NEEDING CONSIDERATION
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
THEME 4: STANDARDIZING MODELS FOR PARKINSON’S CARE MANAGEMENT
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
Importance of including patient perspective in team [6, 10]	○ 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

CHAPS – Care Coordination for Health Promotion and Activities in Parkinson’s Disease; Notebook – Siebens Health Care Notebook [18]
^a These are among the 31 CHAPS standard problems/topics
^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
^c Problem/Topic Intervention Protocol steps were: Assess further, Provide information, Problem solve collaboratively, Clinical referrals, and Community and social services referrals
^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

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ISSN: 1471-2377

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