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.

BACKGROUND: Parkinson's disease (PD) complexity poses challenges for individuals with Parkinson's, providers, and researchers. A recent multisite randomized trial of a proactive, telephone-based, nurse-led care management intervention - Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS) - demonstrated improved PD care quality. Implementation details and supportive stakeholder feedback were subsequently published. To inform decisions on dissemination, CHAPS Model components require evaluations of their fidelity to the Chronic Care Model and to their implementation. Additionally, assessment is needed on whether CHAPS addresses care challenges cited in recent literature. METHODS: These analyses are based on data from a subset of 140 intervention arm participants and other CHAPS data. To examine CHAPS Model fidelity, we identified CHAPS components corresponding to the Chronic Care Model's six essential elements. To assess implementation fidelity of these components, we examined data corresponding to Hasson's modified implementation fidelity framework. Finally, we identified challenges cited in current Parkinson's care management literature, grouped these into themes using open card sorting techniques, and examined CHAPS data for evidence that CHAPS met these challenges. RESULTS: All Chronic Care Model essential elements were addressed by 17 CHAPS components, thus achieving CHAPS Model fidelity. CHAPS implementation fidelity was demonstrated by adherence to content, frequency, and duration with partial fidelity to telephone encounter frequency. We identified potential fidelity moderators for all six of Hasson's moderator types. Through card sorting, four Parkinson's care management challenge themes emerged: unmet needs and suggestions for providers (by patient and/or care partner), patient characteristics needing consideration, and standardizing models for Parkinson's care management. CHAPS activities and stakeholder perceptions addressed all these themes. CONCLUSIONS: CHAPS, a supportive nurse-led proactive Parkinson's care management program, improved care quality and is designed to be reproducible and supportive to clinicians. Findings indicated CHAPS Model fidelity occurred to the Chronic Care Model and fidelity to implementation of the CHAPS components was demonstrated. Current Parkinson's care management challenges were met through CHAPS activities. Thus, dissemination of CHAPS merits consideration by those responsible for implementing changes in clinical practice and reaching people in need. TRIAL REGISTRATION: ClinicalTrials.gov as NCT01532986 , registered on January 13, 2012.

Stakeholder perceptions of components of a Parkinson disease care management intervention, care coordination for health promotion and activities in Parkinson's disease (CHAPS).

BACKGROUND: A recent nurse-led proactive care management intervention, Care Coordination for Health Promotion and Activities in Parkinson Disease (CHAPS), improved care quality when compared to usual care in a randomized controlled trial. Therefore, stakeholder (patient participants, nurse care managers, and Parkinson disease (PD) specialists) perceptions of key intervention components merit evaluation to inform decisions about dissemination. METHODS: This multi-site study occurred in five southwest United States Veterans Health Administration medical centers. Stakeholders were surveyed on their perceptions of CHAPS including the CHAPS Assessment, CHAPS nurse care managers, the Siebens Domain Management Model™ (a practical clinical model), and the Siebens Health Care Notebook (Notebook) (self-care tool). Participants' electronic medical records were abstracted for perceptions of the Notebook. Statistical analysis software was used to provide summary statistics; open card sorting methodology was used to identify themes and attributes in qualitative data including usability of some components. RESULTS: Participants, overall, highly rated their medication self-management, acknowledged some challenges with the CHAPS self-care tools, reported knowledge of PD specialist follow-up and PD red flags, and rated CHAPS nurse care managers as helpful. Nurse care manager responses indicated the CHAPS Assessment and Program highly facilitated care of their patients. Most all PD specialists would refer other patients to CHAPS. Nurse care manager and PD specialist responses indicated improved participant management of their PD. Three themes emerged in participant perceptions of the Notebook: Notebook Assets (e.g., benefits and features-liked); Deferring Notebook Review (e.g., no time to review); and Reasons for Not Using (e.g., participant preference). Shared attributes regarding the Siebens Domain Management Model and Notebook usability, reported by nurse care managers, were user-friendly, person/patient-centered, and organized. Some challenges to their use were also reported. CONCLUSIONS: Overall, stakeholder perceptions of the proactive nurse-led CHAPS intervention indicated its value in the care of individuals with PD. Responses about the CHAPS Assessment, Siebens Domain Management Model, and Notebook self-care tool signified their usefulness. Stakeholders' constructive suggestions indicated their engagement in CHAPS. These findings support CHAPS dissemination and contribute to research in care management. TRIAL REGISTRATION: ClinicalTrials.gov as NCT01532986 , registered on January 13, 2012.

Quality and extent of implementation of a nurse-led care management intervention: care coordination for health promotion and activities in Parkinson's disease (CHAPS).

BACKGROUND: A recent nurse-led, telephone-administered 18-month intervention, Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS), was tested in a randomized controlled trial and improved care quality. Therefore, intervention details on nurse care manager activity (types and frequencies) and participant actions are needed to support potential dissemination. Activities include nurse care manager use of a holistic organizing framework, identification of Parkinson's disease (PD)-related problems/topics, communication with PD specialists and care coordination, participant coaching, and participant self-care actions including use of a notebook self-care tool. METHODS: This article reports descriptive data on the CHAPS intervention. The study setting was five sites in the Veterans Affairs Healthcare System. Sociodemographic data were gathered from surveys of study participants (community-dwelling veterans with PD). Nurse care manager intervention activities were abstracted from electronic medical records and logbooks. Statistical analysis software was used to provide summary statistics; closed card sorting was used to group some data. RESULTS: Intervention participants (n = 140) were primarily men, mean age 69.4 years (standard deviation 10.3) and community-dwelling. All received the CHAPS Initial Assessment, which had algorithms designed to identify 31 unique CHAPS standard problems/topics. These were frequently documented (n = 4938), and 98.6% were grouped by assigned domain from the Organizing Framework (Siebens Domain Management Model™). Nurse care managers performed 27 unique activity types to address identified problems, collaborating with participants and PD specialists. The two most frequent unique activities were counseling/emotional support (n = 387) and medication management (n = 349). Both were among 2749 total performed activities in the category Implementing Interventions (coaching). Participants reported unique self-care action types (n = 23) including use of a new notebook self-care tool. CONCLUSIONS: CHAPS nurse care managers implemented multiple activities including participant coaching and care coordination per the CHAPS protocol. Participants reported various self-care actions including use of a personalized notebook. These findings indicate good quality and extent of implementation, contribute to ensuring reproducibility, and support CHAPS dissemination as a real-world approach to improve care quality. TRIAL REGISTRATION: ClinicalTrials.gov as NCT01532986 , registered on January 13, 2012.

Randomized trial of care management to improve Parkinson disease care quality.

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.

Collaborative care management reduces disparities in dementia care quality for caregivers with less education.

OBJECTIVES: To examine educational gradients in dementia care and whether the effect of a dementia collaborative care management intervention varied according to the educational attainment of the informal caregiver. DESIGN: Analysis of data from a cluster-randomized controlled trial. SETTING: Eighteen clinics in three healthcare organizations in southern California. PARTICIPANTS: Dyads of Medicare recipients aged 65 and older with a diagnosis of dementia and an eligible caregiver. INTERVENTION: Collaborative care management for dementia. MEASUREMENTS: Caregiver educational attainment, adherence to four dimensions of guideline-recommended processes of dementia care (assessment, treatment, education and support, and safety) before and after the intervention, and the adjusted intervention effect (IE) for each dimension stratified according to caregiver education. Each IE was estimated by subtracting the difference between pre- and postintervention scores for the usual care participants from the difference between pre- and postintervention scores in the intervention participants. RESULTS: At baseline, caregivers with lower educational attainment provided poorer quality of dementia care for the Treatment and Education dimensions than those with more education, but less-educated caregivers had significantly more improvement after the intervention on the assessment, treatment, and safety dimensions. The IEs for those who had not graduated from high school were 44.4 for the assessment dimension, 36.9 for the treatment dimension, and 52.7 for the safety dimension, versus 29.5, 15.7, and 40.9 respectively, for college graduates (P < .001 for all three). CONCLUSIONS: Collaborative care management was associated with smaller disparities in dementia care quality between caregivers with lower educational attainment and those with more education.

A dementia care management intervention: which components improve quality?

OBJECTIVES: To analyze whether types of providers and frequency of encounters are associated with higher quality of care within a coordinated dementia care management (CM) program for patients and caregivers. DESIGN: Secondary analysis of intervention-arm data from a dementia CM cluster-randomized trial, where intervention participants interacted with healthcare organization care managers (HOCMs), community agency care managers (CACMs), and/ or healthcare organization primary care providers (HOPCPs) over 18 months. METHODS: Encounters of 238 patient/caregivers (dyads) with HOCMs, CACMs, and HOPCPs were abstracted from care management electronic records. The quality domains of assessment, treatment, education/support, and safety were measured from medical record abstractions and caregiver surveys. Mean percentages of met quality indicators associated with exposures to each provider type and frequency were analyzed using multivariable regression, adjusting for participant characteristics and baseline quality. RESULTS: As anticipated, for all 4 domains, the mean percentage of met dementia quality indicators was 15.5 to 47.2 percentage points higher for dyads with HOCM--only exposure than for dyads with none (all P < .008); not anticipated were higher mean percentages with increasing combinations of provider-type exposure-up to 73.7 percentage points higher for safety (95% confidence interval 65.2%-82.1%) with exposure to all 3 provider types compared with no exposure. While greater frequency of HOCM-dyad encounters was associated with higher quality (P < .04), this was not so for other provider types. CONCLUSIONS: HOCMs' interactions with dyads was essential for dementia care quality improvement. Additional coordinated interactions with primary care and community agency staff yielded even higher quality.

Predictors of acceptance of offered care management intervention services in a quality improvement trial for dementia.

OBJECTIVE: Care management approaches have been proven to improve outcomes for patients with dementia and their family caregivers (dyads). However, acceptance of services in these programs is incomplete, impacting effectiveness. Acceptance may be related to dyad as well as healthcare system characteristics, but knowledge about factors associated with program acceptance is lacking. This study investigates patient, caregiver, and healthcare system characteristics associated with acceptance of offered care management services. METHODS: This study analyzed data from the intervention arm of a cluster randomized controlled trial of a comprehensive dementia care management intervention. There were 408 patient-caregiver dyads enrolled in the study, of which 238 dyads were randomized to the intervention. Caregiver, patient, and health system factors associated with participation in offered care management services were assessed through bivariate and multivariate regression analyses. RESULTS: Out of the 238 dyads, 9 were ineligible for this analysis, leaving data of 229 dyads in this sample. Of these, 185 dyads accepted offered care management services, and 44 dyads did not. Multivariate analyses showed that higher likelihood of acceptance of care management services was uniquely associated with cohabitation of caregiver and patient (p < 0.001), lesser severity of dementia (p = 0.03), and higher patient comorbidity (p = 0.03); it also varied across healthcare organization sites. CONCLUSIONS: Understanding factors that influence care management participation could result in increased adoption of successful programs to improve quality of care. Using these factors to revise both program design as well as program promotion may also benefit external validity of future quality improvement research trials.

Determining care management activities associated with mastery and relationship strain for dementia caregivers.

OBJECTIVES: To identify specific care management activities within a dementia care management intervention that are associated with 18-month change in caregiver mastery and relationship strain. DESIGN: Exploratory analysis, using secondary data (care management processes and caregiver outcomes) from the intervention arm of a clinic-level randomized, controlled trial of a dementia care management quality improvement program. SETTING: Nine primary care clinics in three managed care and fee-for-service southern California healthcare organizations. PARTICIPANTS: Two hundred thirty-eight pairs: individuals with dementia and their informal, nonprofessional caregivers. MEASUREMENTS: Care management activity types extracted from an electronic database were used as predictors of caregiver mastery and relationship strain, which were measured through mailed surveys. Multivariable linear regression models were used to predict caregiver mastery and relationship strain. RESULTS: For each care manager home environment assessment, caregiver mastery increased 4 points (range 0-100, mean+/-standard deviation 57.1+/-26.6, 95% confidence interval (CI)=2.4-5.7; P=.001) between baseline and 18 months. For every action linking caregivers to community agencies for nonspecific needs, caregiver mastery decreased 6.2 points (95% CI=-8.5 to -3.9; P<.001). No other care management activities were significantly associated with this outcome, and no specific activities were associated with a change in caregiver relationship strain. CONCLUSION: Home assessments for specific needs of caregivers and persons with dementia are associated with improvements in caregivers' sense of mastery. Future work is needed to determine whether this increase is sustained over time and decreases the need for institutionalization.

Caring for patients with dementia: how good is the quality of care? Results from three health systems.

OBJECTIVES: To describe the quality of dementia care within one U.S. metropolitan area and to investigate associations between variations in quality and patient, caregiver, and health system characteristics. DESIGN: Observational, cross-sectional. SETTING AND PARTICIPANTS: Three hundred eighty-seven patient-caregiver pairs from three healthcare organizations MEASUREMENTS: Using caregiver surveys and medical record abstraction to assess 18 dementia care processes drawn from existing guidelines, the proportion adherent to each care process was calculated, as well as mean percentages of adherence aggregated within four care dimensions: assessment (6 processes), treatment (6 processes), education and support (3 processes), and safety (3 processes). For each dimension, associations between adherence and patient, caregiver, and health system characteristics were investigated using multivariable models. RESULTS: Adherence ranged from 9% to 79% for the 18 individual care processes; 11 processes had less than 40% adherence. Mean percentage adherence across the four care dimensions was 37% for assessment, 33% for treatment, 52% for education and support, and 21% for safety. Higher comorbidity was associated with greater adherence across all four dimensions, whereas greater caregiver knowledge (in particular, one item) was associated with higher care quality in three of four care dimensions. For selected dimensions, greater adherence was also associated with greater dementia severity and with more geriatrics or neurologist visits. CONCLUSION: In general, dementia care quality has considerable room for improvement. Although greater comorbidity and dementia severity were associated with better quality, caregiver knowledge was the most consistent caregiver characteristic associated with better adherence. These findings offer opportunities for targeting low quality and suggest potential focused interventions.

The effect of a disease management intervention on quality and outcomes of dementia care: a randomized, controlled trial.

BACKGROUND: Adherence to dementia guidelines is poor despite evidence that some guideline recommendations can improve symptoms and delay institutionalization of patients. OBJECTIVE: To test the effectiveness of a dementia guideline-based disease management program on quality of care and outcomes for patients with dementia. DESIGN: Clinic-level, cluster randomized, controlled trial. SETTING: 3 health care organizations collaborating with 3 community agencies in southern California. PARTICIPANTS: 18 primary care clinics and 408 patients with dementia age 65 years or older paired with 408 informal caregivers. INTERVENTION: Disease management program led by care managers and provided to 238 patient-caregiver pairs at 9 intervention clinics for more than 12 months. MEASUREMENTS: Adherence to 23 guideline recommendations (primary outcome) and receipt of community resources and patient and caregiver health and quality-of-care measures (secondary outcomes). RESULTS: The mean percentage of per-patient guideline recommendations to which care was adherent was significantly higher in the intervention group than in the usual care group (63.9% vs. 32.9%, respectively; adjusted difference, 30.1% [95% CI, 25.2% to 34.9%]; P < 0.001). Participants who received the intervention had higher care quality on 21 of 23 guidelines (P < or = 0.013 for all), and higher proportions received community agency assistance (P < or = 0.03) than those who received usual care. Patient health-related quality of life, overall quality of patient care, caregiving quality, social support, and level of unmet caregiving assistance needs were better for participants in the intervention group than for those in the usual care group (P < 0.05 for all). Caregiver health-related quality of life did not differ between the 2 groups. LIMITATIONS: Participants were well-educated, were predominantly white, had a usual source of care, and were not institutionalized. Generalizability to other patients and geographic regions is unknown. Also, costs of a care management program under fee-for-service reimbursement may impede adoption. CONCLUSIONS: A dementia guideline-based disease management program led to substantial improvements in quality of care for patients with dementia. Current Controlled Trials identifier: ISRCTN72577751.