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.

Perceptions of a Health Care Notebook from Female Breast Cancer Survivors with Cognitive Impairment.

Strengthening communication between providers and patients, especially those with cognitive impairment, is required given care complexity and fragmentation across the care continuum. Therefore, determining patient perceptions about the Siebens Health Care Notebook (SHCN), a tool to support self-management and strengthen communication and care continuity, is fundamental to understanding SHCN usability. Participants were breast cancer survivors in a study evaluating a 6-week cognitive rehabilitation program, who reported cancer-related cognitive impairment (Functional Assessment of Cancer Therapy-Cognitive Function-Perceived Cognitive Impairment (PCI) subscale < 59). Participant groups were alternately assigned to receive the SHCN (intervention) or not (control). SHCN recipients completed a 3-item qualitative perception survey at program completion. Both groups were surveyed at baseline, program completion, and 4 weeks later about communication with physicians. Scores were compared using Wilcoxon rank-sum tests. No baseline demographic or PCI score differences occurred between intervention (n = 29) and control (n = 16) groups. Of 22 (76%) who completed the SHCN perception survey, 100% endorsed it as useful in tracking health information, as helpful, and would recommend it to others. No group differences in communication activities with physicians were demonstrated. Women reporting cognitive impairment after breast cancer treatment perceived the SHCN as a beneficial self-care tool and would suggest it to others. Communication activities with physicians did not change during the study's short duration. Future research is needed to evaluate SHCN features contributing to helpfulness and details on use, including two-way communication activities between patients and physicians, across the care continuum.

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.

Variation in Rehabilitation Treatment Patterns for Hip Fracture Treated With Arthroplasty.

BACKGROUND: Recommendations for health care redesign often advocate for comparative effectiveness research that is patient-centered. For patients who require rehabilitation services, a first step in this research process is to understand current practices for specific patient groups. OBJECTIVE: To document in detail the physical and occupational therapy treatment activities for inpatient hip fracture rehabilitation among 3 patient subgroups distinguished by their early rate of functional recovery between time of surgery to rehabilitation admission. DESIGN: Multicenter prospective observational cohort, practice-based evidence, study. SETTING: Seven skilled nursing facilities and 11 inpatient rehabilitation facilities across the United States. PARTICIPANTS: A total of 226 patients with hip fractures treated with hip arthroplasty. METHODS: Comparisons of physical and occupational therapy treatment activities among 3 groups with different initial recovery trajectory (IRT) rates (slower, moderate, faster). MAIN OUTCOME MEASURE(S): Percent of patients in each IRT group exposed to each physical and occupational therapy activity (exposure), and mean minutes per week for each activity (intensity). RESULTS: The number of patients exposed to different physical or occupational therapy activities varied within the entire sample. More specifically, among the 3 IRT groups, significant differences in exposure occurred for 44% of physical therapy activities and 39% of occupational therapy activities. More patients in the slower recovery group, IRT 1, received basic activities of daily living treatments and more patients in the faster recovery group, IRT 3, received advanced activities. The moderate recovery group, IRT 2, had some treatments similar to IRT 1 group and others similar to IRT 3 group. CONCLUSIONS: Analyses of practice-based evidence on inpatient rehabilitation of hip fracture patients treated with arthroplasty identified differences in therapy activities among three patient groups classified by IRT rates. These results may enhance physiatrists', other physicians', and rehabilitation teams' understanding of inpatient rehabilitation for these patients and help design future comparative effectiveness research.

Study protocol of "CHAPS": a randomized controlled trial protocol of Care Coordination for Health Promotion and Activities in Parkinson's Disease to improve the quality of care for individuals with Parkinson's disease.

BACKGROUND: Parkinson's disease, the second most common neurodegenerative disease, is diagnostically defined by motor impairments, but also includes often under-recognized impairments in cognition, mood, sleep, and the autonomic nervous system. These problems can severely affect individuals' quality of life. In our prior research, we have developed indicators to measure the quality of care delivered to patients with Parkinson's disease, and we identified gaps in delivering evidence-based treatments for this population. Effective strategies to close these gaps are needed to improve patient quality of life. METHODS/DESIGN: Building on prior research we developed a multi-faceted proactive implementation program called Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS). To be eligible, patients had to have at least two visits with a primary diagnosis of idiopathic Parkinson's disease (ICD-9 code: 332.0) at one of five Veterans Affairs Medical Centers in the southwestern United States from 2010 to 2014. The program consists of telephone assessments, evidence-based protocols, and tools to enhance patient self-management, care planning, and coordination of care across providers, including an electronic database to support and track coordination of care. Our mixed-methods study employs a randomized, controlled trial design to test whether the CHAPS intervention improves performance in 38 quality measures among an analytic sample of 346 patients. The 38 quality measures are categorized into overarching areas of communication, education, and continuity; regulatory reporting; diagnosis; periodic assessment; medication use; management of motor and non-motor symptoms; use of non-pharmacological approaches and therapies; palliative care; and health maintenance. Secondary outcomes are patient health-related quality of life, self-efficacy, and perceptions of care quality. We are also evaluating the extent of the CHAPS Program implementation and measuring program costs and impacts on health services utilization, in order to perform a analysis of the CHAPS program from the perspective of the Veterans Health Administration (VA). Outcomes are assessed by interviewer-administered surveys collected at baseline and at 6, 12, and 18 months, and by medical record chart abstractions. Analyses will be intention-to-treat. DISCUSSION: The CHAPS Program is poised for dissemination within the VA National Parkinson's Disease Research, Education, and Clinical Center Consortium if demonstrated efficacious. TRIAL REGISTRATION: ClinicalTrials.gov NCT01532986; registered on January 13, 2012.

Correlates of a Single-Item Quality-of-Life Measure in People Aging with Disabilities.

OBJECTIVE: Practical quality-of-life (QOL) screening methods are needed to help focus clinical decision-making on what matters to individuals with disabilities. DESIGN: A secondary analysis of a database from a large study of adults aging with impairments focused on four diagnostic groups: cerebral palsy (n = 134), polio (n = 321), rheumatoid arthritis (n = 99), and stroke (n = 82). Approximately 20% of cases were repeated measures of the same individuals 3-5 yrs later. Functional levels, depression, and social interactions were assessed. The single-item, subjective, seven-point Kemp Quality of Life Scale measured QOL. For each diagnostic group, Kemp Quality of Life Scale responses were divided into low, average, and high QOL subgroups. Analysis of variance and Tukey honestly significant difference tests compared clinical characteristics among these subgroups. RESULTS: Duration of disability varied among the four groups. Within each group, QOL subgroups were similar in age, sex, and duration of disability. Low mean QOL was associated with lower functional level, higher depression scores, and lower social interaction (P < 0.001) in all four groups. In contrast, high mean QOL was associated with higher social interaction (P < 0.001). CONCLUSION: The Kemp Quality of Life Scale relates significantly to clinically relevant variables in adults with impairments. The scale's utility in direct clinical care merits further examination.

Strengthening information capture in rehabilitation discharge summaries: an application of the Siebens Domain Management Model.

OBJECTIVE: To increase relevant information capture in inpatient rehabilitation discharge summaries. DESIGN: In July 2008, the Siebens Domain Management Model (SDMM) was incorporated into discharge summaries. This model organizes patients' health-related issues into 4 domains: I. Medical/Surgical Issues, II. Mental Status/Emotions/Coping, III. Physical Function, and IV. Living Environment (© Hilary C. Siebens MD 2005). Discharge summary content was measured through retrospective chart review. SETTING: An inpatient rehabilitation unit affiliated with a physical medicine and rehabilitation residency program. PARTICIPANTS: Forty cases with discharge summaries: 20 traditional reports (historic controls) and 20 SDMM reports after model introduction randomly chosen from residents' final inpatient rotation week. METHODS: A documentation review form included 36 items that covered the 4 SDMM domains and assessed item presence in reports. The Global score and 4 Domain scores per each patient report were calculated to reflect the percentage of items present in the entire report and each domain, respectively. Descriptive statistics for these scores were generated and compared between traditional and SDMM reports by using a 2-group t-test. MAIN OUTCOME MEASUREMENTS: Global scores and Domain scores. RESULTS: Global scores increased from 34% to 53% of items present in traditional versus SDMM reports respectively (P < .001); Domain Scores also increased in domains I (81% to 92%, P = .047), II (9% to 47%, P < .001), III (25% to 34%, P = .062), and IV (11% to 33%, P < .001). CONCLUSION: Traditional rehabilitation discharge summaries lacked information relevant to rehabilitation care. Information capture and total relevant report content increased significantly after SDMM integration into reports.

Outcomes and weight-bearing status during rehabilitation after arthroplasty for hip fractures.

OBJECTIVE: To examine the association of weight-bearing status with patient-related variables and outcomes of inpatient rehabilitation after hip arthroplasty for acute hip fracture. DESIGN: A multi-site prospective observational cohort study. SETTING: Eighteen skilled nursing and inpatient rehabilitation facilities. SUBJECTS: Patients with hip fractures (N = 224) treated with hip arthroplasty and admitted to either skilled nursing or inpatient rehabilitation facilities; a subset (N = 84) with telephone follow-up outcomes 8 months after rehabilitation discharge. METHODS: Measurements included demographic variables, medical severity using the Comprehensive Severity Index, and functional levels using the Functional Independence Measure. MAIN OUTCOMES MEASUREMENT: Cognitive, motor, and total Functional Independence Measure scores at rehabilitation discharge and at 8-month follow-up; living location at discharge and follow-up. RESULTS: Patients on average (standard deviation) were 76.8 ± 11.4 years old, mainly women (78%), and mainly white (87%). In unadjusted analysis, weight bearing as tolerated (WBAT) was associated with less osteoarthritis (P = .025) and lower admission medical severity (ACSI) (P = .014). One participating facility had a significant preponderance of restricted weight-bearing cases. WBAT had no bivariate association with cognitive or motor function at discharge. Therapists cited restricted weight bearing as a barrier to therapy in 11% of cases. In logistic regressions, lower medical admission severity, older age, and one specified site significantly predicted WBAT (c statistic = 0.714). Significant predictors for home discharge included lower maximum severity (P < .001), younger age (P < .001), higher cognition (P = .037), and WBAT (P = .051) (c statistic = 0.863). CONCLUSIONS: WBAT is associated with a greater likelihood of home discharge and had similar functional outcomes compared with restricted weight bearing. These findings add support for allowing WBAT after arthroplasty for hip fracture.

Initial recovery trajectories among patients with hip fracture: a conceptual approach to exploring comparative effectiveness in postacute care.

OBJECTIVE: To assess whether clusters of patients with hip fracture and with distinct initial recovery trajectories (IRT) could be identified by using practice-based evidence data and to examine the validity of these data. DESIGN: Analysis of multisite prospective observational cohort study database. SETTING: Eighteen skilled nursing and inpatient rehabilitation facilities. PATIENTS: Patients with hip fractures (N = 226) treated with joint replacement and admitted to skilled nursing or inpatient rehabilitation facilities, subset (n = 85), with telephone follow-up results approximately 8 months after rehabilitation discharge. Patients' ages were 76.8 ± 11.4 years; the majority were women (78%) and white (87%). METHODS: Measurements included medical severity by using the Comprehensive Severity Index and functional levels by using Functional Independence Measure (FIM). The IRT was calculated for each patient as the rate of change in function from the time of surgery to rehabilitation admission. We used cluster analysis to partition patients into subsets that shared common IRT scores. Validity was explored by comparing subgroups across patient characteristics and treatment patterns. Significance was defined as P ≤ .05. MAIN OUTCOMES MEASUREMENTS: IRT grouping, Comprehensive Severity Index, FIM, discharge location, living location at follow-up. RESULTS: We identified 3 patient clusters with differentiated IRT scores: group 1: 4.96 ± 2.45 (range, 0.4-8.6) FIM point change per day; group 2: 12.42 ± 2.51 (range, 8.9-17.0); group 3: 26.80 ± 13.78 (range, 17.5-70.0). Clinical group validation was established from statistically different Comprehensive Severity Index scores on admission; FIM scores at admission, discharge, and follow-up; and discharge and 8-month living settings. Calculation of IRT recovery curves by using FIM scores and associated time in days through logarithmic regression curves confirmed each group's IRT remained distinct through rehabilitation and follow-up. CONCLUSIONS: The IRT concept appears to be valid in patients with hip fracture who were treated with hip arthroplasty, and may assist in evaluating and comparing the effectiveness of postacute rehabilitation services.

Proposing a practical clinical model.

Patients experience benefits from stroke rehabilitation while simultaneously confronting frustrating limitations in recovery. Some of these limitations occur beyond the visibility and recognition of physicians and other health care professionals. Kaufman's phenomenological study of boundaries of authority and responsibility in medicine thoughtfully examines factors contributing to these limitations following stroke. One source of boundaries affecting these experiences are the conceptual models guiding the provided care. One is the well-established biomedical model. Biologically nonmeasurable aspects of a patient are left unconsidered. A more holistic model risks condoning medical interventions in nonbiological dimensions of a person's life. Kaufman suggests that conflict between these perspectives can contribute to suffering in the cases examined. This stimulates reflection on what might be done differently. Although not eliminating boundaries between health care and individual's experiences of chronic illness and health conditions, a practical clinical framework, the Siebens Domain Management Model (SDMM), can bridge some of these boundaries. It integrates the biomedical and the holistic biopsychosocial models. The framework is understandable to patients, bridging the gap between the health care providers' and individuals' life worlds. With consistent application over time, the SDMM framework may lessen some care limitations and associated suffering resulting from boundaries described by Kaufman.

Musculoskeletal problems as comorbidities.

Musculoskeletal comorbidities increasingly are prevalent and present specific research challenges and opportunities. Several definitions for musculoskeletal comorbidities exist depending on the patient population and research approach. Population studies document that musculoskeletal problems, defined as arthritis, are the most prevalent condition in the population as a whole and therefore a frequent comorbidity. As adults with disabilities age and as the population as a whole ages, musculoskeletal comorbidities will become increasingly common. Multiple research studies have begun examining the relationships of musculoskeletal conditions to other health conditions in pediatric, middle-aged, and older adults. Multiple specific research approaches are needed to understand predisposing risk factors, prevention, progression, consequences, and treatment strategies for these conditions.