Introduction: In response to the increasing complexity of care for patients with bleeding disorders, we established new clinical teams for our hemophilia treatment center (HTC). Aims: We undertook a quality improvement project to improve the coordination and communication with our patients by establishing primary assignments of clinical staff to individual patients (primary teams). Methods: A quality improvement project group was formed that established the goals and assignment of primary teams. Patients were surveyed for their knowledge of their primary teams as well as their ability to schedule and contact their primary providers. As a measure of the effects on clinical staff, a balancing survey was also conducted among providers impacted by the clinical assignment of teams. Results: Our results demonstrate improvements across both coordination and communication as reported by patients. Additionally, the assignment of primary teams was met with high satisfaction and improvement in coordination and communication as reported by the clinical staff members of the HTC. Conclusions: Initiation of a quality improvement project and the creation of a primary team system were feasible at a large HTC and resulted in improvements in both patient-reported and staff-reported outcomes of coordination and communication of care.

The increasing complexity of medicine has necessitated adaptions to practice size, scope, and health care delivery. While there are many models of health care delivery at the provider-patient level, the interaction between a care provider and patient underlies the fundamental interaction in medicine. Upon review of our practices at the University of Colorado Hemophilia and Thrombosis Center (UCHTC), it was apparent that select patients were well known to certain members of the clinical staff but that this knowledge was not globally shared among care providers. Therefore, we embarked on a process to identify and assign patients to a specific team of health-care providers that could provide a consistent approach across multiple interactions to reinforce the long-term goals of patient care.

The role of team-based medicine has been increasing in recent years, and the concept of a medical home, where multiple complex medical issues are managed, is increasingly common in medical practice [1]. Hemophilia treatment centers (HTCs), which have long provided comprehensive care for patients with bleeding and thrombotic disorders, function as a medical home for many of our patients and have been suggested as the most appropriate setting for the care of individuals with hemophilia and other bleeding disorders [2, 3]. It has been shown that continuity of care and team-based approaches lead to improved patient satisfaction and objective outcomes in many different disease models [4-6]. Furthermore, there has been increasing emphasis placed on determining the appropriate size of a patient panel [7, 8], and the complexity of our patients often requires more specialized and consistent care.

Feedback from our patients focused our efforts on providing high-level care that emphasized effective communication and coordination of care. The aim of this initiative was focused on how to structure our overall practice panel to improve coordination and communication. We hypothesized that the assignment of a primary physician and primary nursing care coordinator would result in improved coordination and communication between patients and HTC staff. We used quality improvement methodology to achieve these goals with a multidisciplinary committee to assess the current problem, design appropriate interventions, study the outcomes, and adjust the interventions as necessary.

UCHTC Effective Clinical Management Meeting

The UCHTC is a large center that cares for over 900 patients with bleeding disorders. We have 9 physicians, all of whom spend over half of their time doing clinical or laboratory-based research, 2 advanced practice providers, 5 nurses, 3 physical therapists, 3 pharmacists, and 4 psychosocial staff members. The effective clinical management meeting at the UCHTC was started in March 2015. At that time, a survey of members at the UCHTC revealed key topics that were suggested for clinical quality improvement. The concept of primary teams was created in the following months, with team members meeting monthly. Members of the primary teams subgroup were volunteers and consisted of a medical assistant, social worker, physical therapist, attending physician, physician assistant, and multiple members of the nursing team.

Intervention: Primary Team Subproject

The goal of the primary team subgroup was to “improve communication between, and continuity of care with, the HTC and patients with primary teams. ”Patients were assigned to either pediatric- or adult-focused primary teams. Initial assignments took into account past patient-provider relationships, and at the physician level, clinical full-time equivalent to approximate patient panels. Due to certain clinical requirements, not all adult patients were initially assigned an attending physician although they did receive a primary nurse care coordinator. Patients with complex medical scenarios were assigned to both a primary and “backup” team. Primary team assignments were assigned beginning in the fall of 2017, with the official rollout of the primary team system in December 2017. The role of the primary provider was to provide continuity for major treatment decisions such as surgical planning, inhibitor management, or therapy switches with a time frame of response of 48 h. Primary providers were not expected to see patients acutely for incidents such as acute bleeding (which in our clinic are handled by the “Provider of the Day”). If members of the patient’s primary team were unavailable for >48 h (our designated maximum response time), treatment decisions and/or other tasks usually performed by the primary team shifted to the “Provider of the Day.”

Study of the Intervention: Patient Survey

The study period was from January 2017 to April 2019. January 2017 to December 2017 was dedicated to subgroup meetings and planning, December 2017 to February 2019 was dedicated to subgroup meetings (including interim data analysis) and data collection, and February 2019 to April 2019 was dedicated to final data analysis. To assess for improvements in the stated goal of the primary teams, we designed a patient survey (see online suppl. 1; see www.karger.com/doi/10.1159/000515350 for all online suppl. material). The survey questions were designed to assess for improvements in communication and coordination of care from the perspective of the patient; the team felt that the patient, as the consumer of the health care delivered, was in the best position to evaluate potential changes in coordination and communication. The survey questions were generated via group consensus among the primary teams subgroup and do not represent a validated survey tool to evaluate potential changes in coordination and communication. These surveys were administered in the UCHTC clinic during the first 2 weeks of each month and given to all bleeding disorder patients either coming in for a scheduled annual comprehensive visit or for an acute visit due to a specific concern. The paper survey document was given to the patient/caregiver(s) at check-in by a medical assistant and then collected at the end of the visit. For pediatric patients (age <18 years), guardians were asked to fill out the form. The responses were anonymous unless the patient/caregiver(s) elected to voluntarily provide their name for purposes of follow-up contact. Approximately once a month, results were then scanned and automated text recognition software used to detect answers. If no date was reported on the survey (i.e., a patient failed to fill in the date of their clinic visit), then the scan date was assigned as the date of survey response. Control charts were created using the “qiplots2” package of R. As a balancing measure of the effects of this primary team implementation on the clinical services staff at the UCHTC, we conducted an online survey using the internal REDCap database of the University of Colorado – Denver – Anschutz Medical Campus [9] (online suppl. 2).

Analysis of the Intervention

At 3-month intervals of Plan-Do-Study-Act cycles, the results of the above surveys were analyzed and reviewed. Pie charts of overall affirmative answers were reviewed by the team. Data were presented in both overall (study initiation to current date) and interval (time since last data analysis) blocks. To ensure completeness of the data, the average number of expected visits was compared to overall surveys returned. Due to the voluntary nature of the survey, it was anticipated that we would not have 100% compliance with survey return. To minimize increased study demands on staff members, the balancing measure survey was completed at the end of study period.

Ethical Considerations

As the assignment of primary providers is a well-established health care practice/medical organizational structure, no ethical aspects were identified. Of note, patients were allowed to request that their primary providers be changed to providers of their preference.

Patient Breakdown

As of April 2019, there were 957 patients diagnosed with a bleeding disorder at the UCHTC; 387 were under the age of 18 years, 570 were over the age of 18 years, and 537 were noted to have a diagnosis of hemophilia. Overall, 718/957 (75%) of patients with the diagnosis of a bleeding disorder were assigned a primary team member by the clinical members of the UCHTC. Patient panel size was roughly distributed to the academic clinical full-time equivalent of the attending providers and equally distributed among nurse care coordinators.

Patient Survey and Control Charts

As of April 2019, we had 104 analyzable responses to our patient survey, covering clinical visits from December 2017 to February of 2019. Fifty-three of the responses were from patients <18 years of age (51%). We next created control charts for each of our survey questions. As shown in Figure 1, there was significant variability in our survey response data. Responses seemed to be highly correlated, such that affirmative answers to 1 survey question were linked to similar answers on other questions. In all, 67.3% responded “yes” to the question “Do you know who your primary team is?”, 50% responded “yes” to the question “Were you scheduled with your primary team and were they available to see you?”, and 59.6% responded “yes” to the question “Are you able to contact your primary team when you have specific issues or concerns?” A minority of patients answered “I don’t know” to the questions of being able to schedule with primary team (35%) and being able to contact their primary team (27%).

Fig. 1.

Run charts and linear regression models of patient survey. Control charts the overall responses for each patient survey. Each single dot represents a single reported patient survey. For data analysis, patient surveys were aggregated for each clinic day (represented by row of circles). Results shown in blue are within the control limits of the initiative, and results shown in red represent outcomes outside the control limits (3 standard deviations from the mean).

Fig. 1.

Run charts and linear regression models of patient survey. Control charts the overall responses for each patient survey. Each single dot represents a single reported patient survey. For data analysis, patient surveys were aggregated for each clinic day (represented by row of circles). Results shown in blue are within the control limits of the initiative, and results shown in red represent outcomes outside the control limits (3 standard deviations from the mean).

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Balancing Measures

In order to determine the effects of this initiative on the staff members of the UCHTC, a balancing measure survey was sent at the end of the study period (online suppl. 2). Response rate was 78% (25/32) of total surveys. The survey responses represented responses from various types of staff members, including physical therapists, nursing staff, front-office staff, medical assistants, social workers/psychologists, clinical research staff, pharmacists, and providers (physicians and physician assistants). The provider response was 78% (7/9). A majority of individuals cited the initiation of primary teams as improving communication and coordination of care and noted this process had no significant effect on increasing or decreasing their overall workload. A small percentage (5%) of responses noted mild to moderate worsening of communication, coordination, and time spent due to the initiation of primary teams (Fig. 2).

Fig. 2.

Balancing survey results of the University of Colorado Hemophilia and Thrombosis Center staff. A REDCap survey was sent to all clinical staff members. The resulting waffle plots demonstrate the overall breakdown (percentage) of responses for each individual question, as measured on a 1–5 Likert-style questionnaire.

Fig. 2.

Balancing survey results of the University of Colorado Hemophilia and Thrombosis Center staff. A REDCap survey was sent to all clinical staff members. The resulting waffle plots demonstrate the overall breakdown (percentage) of responses for each individual question, as measured on a 1–5 Likert-style questionnaire.

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At the UCHTC, we created a primary team care-based model of primary patient panels. This was established with a goal of improving communication and coordination of care for our patients with bleeding disorders by more directly connecting them with both nurses and providers familiar with their care.

The benefits of a primary team care-based model have been established in other disease-specific care models, and recent treatment guidelines for the care of persons with hemophilia highlight the need for an integrative team-based approach [2, 3, 10]. However, our approach takes that generalized concept one step further to codify individual patient-provider relationships.

Over the time course of this project, we saw improvements in multiple outcomes, such as patients, affirmation in being able to contact and be scheduled with their primary team members, which suggest improvements in communication and coordination of care. Thus, from a patient-reported perspective, our intervention was associated with improvements in communication and coordination of care. We unfortunately do not have other clinical data that correlate with this observation; however, this project was intentionally focused on improving the patient’s experience rather than other organizational metrics.

We did not see an improvement in the proportion of patients who could identify the members of their primary teams. This could be due to the formatting of the question. “Do you know who your primary team is?” may have suggested that patients should only answer yes if they knew their entire primary team. Thus, it is possible that this lack of improvement is representative of the question formatting rather than a lack of knowledge of primary team members. Furthermore, in our balancing report, we noted that we did not have a standardized communication method to introduce the concept of primary teams to patients and their families; this may have led to confusion about which staff members constituted a particular primary team.

Additional balancing measures/reports were revealed in a survey of the clinical staff of the UCHTC. We found that the majority of individuals found that this initiative improved communication and coordination of care with our patients. This finding from our staff aligned with the patient-reported outcomes in improvements in communication and coordination. As reported by our staff members, the initiative not only improved the quantitative metrics of the relationship (communication and coordination) but was also a highly satisfying intervention and had minimal effects on overall clinical workload.

We have several limitations related to this project. We used an internal, consensus-based questionnaire that was designed to measure the outcomes that we focused on. However, this questionnaire does not represent a validated patient questionnaire. We received 104 completed surveys and do not know the total number of surveys distributed. We intentionally limited survey distribution to a time-based subset of patients (the first 2 weeks of each month on Monday, Wednesday, and Thursday) to minimize survey burden, but this may have led to undersampling of our study population. As we approached all patients, we sought to minimize selection bias; however, as we do not know the percentage of total surveys returned, we cannot account for response bias. We cannot ensure that the improvements seen in both patient-reported and provider-reported metrics of communication and coordination were due to this intervention. However, there were no other significant changes made to coordination and/or communications practices during the intervention period. We also only assigned primary attendings and nursing teams, intentionally choosing not to assign primary physical therapists and/or other care team members. Realizing the importance of these team members at our center, as well as at other HTCs, consideration should be given to having them function as a formal portion of any primary team assignment. We did not “cross-reference” the answers of our survey with actual assignments; this was a deliberate approach (1) to protect patient anonymity and (2) to assess, only through the perspective of the patient, whether or not they felt they had a “team.” Importantly, as a quality improvement project at our local center, this report highlights a single, initial experience at our local center and should be not inferred to be generalizable to a broader population. Finally, there was a relatively high number of “I don’t know” or “n/a” responses to our survey. This may have been due to the limitation of lack of upfront assignments but could also reflect challenges in our scripting and messaging to patients about the change to a primary team system and who exactly was on their primary team. This may have also resulted from an ambiguous question on our patient survey that may have led to patient confusion.

In conclusion, we have demonstrated that a reorganization of the patient care model in our HTC that focused on primary provider assignments improved coordination and communication of care, as reported by both patients and clinical staff. It also proved to be highly satisfying to UCHTC staff and had minimal impacts on clinical effort. The effort was highly sustainable in our center as a model of practice, especially as part of a greater emphasis on quality improvement.

No informed consent was required, as this project was determined to be quality improvement by the University of Colorado QA Program Evaluation Research Tool (CF-195) and did not meet the definition of research per DHHS regulations. C.J.N. and M.W. completed the University of Colorado QA Program Evaluation Research Tool (CF-195).

C.J.N. has received consultancy fees from CSL Behring and Takeda. B.W. has received research funding from Bayer and CSL Behring and consultancy fees from Novo Nordisk. N.S. has received consultancy fees from Pfizer, Shire, and Bayer. T.W.B. has received consultancy fees from UniQure, Tremeau Pharmaceuticals, and BioMarin; served on advisory boards for Tremeau, Takeda, Novo Nordisk, Pfizer, Spark Therapeutics, Bayer, Kedrion, and Genentech; and received research funding from Genetech. M.W. has consulted for Bayer Healthcare, Bioverativ, CSL Behring, Novo Nordisk, Takeda, BioMarin, Roche/Genentech, and HEMA Biologics. M.M.-J. has received research support from Bayer and serves on advisory boards for CSL Behring, HEMA Biologics, Genentech, Novo Nordisk, and Takeda. B.B. received consulting honoraria from Kedrion, BioProducts Lab, Biomarin, Shire, Innovative Biopharma, and Octapharma.

This work was supported by grants/support from the Health Resources & Services Administration – Maternal & Child Health Bureau (5 H30 MC00008-20-00).

C.J.N. performed the research, designed the research study, analyzed the data, and wrote the paper. N.S. performed the research, designed the research study, analyzed the data, and wrote the paper. R.S. performed the research, designed the research study, analyzed the data, and wrote the paper. A.L. performed the research, designed the research study, and analyzed the data. S.F. performed the research, designed the research study, analyzed the data, and wrote the paper. M.M.-J. analyzed the data and wrote the paper. B.B. analyzed the data and wrote the paper. B.W. analyzed the data and wrote the paper. T.W.B. analyzed the data and wrote the paper. A.C. performed the research, analyzed the data, and wrote the paper. G.M. analyzed the data. M.W. analyzed the data and wrote the paper. E.G. performed the research, designed the research study, analyzed the data, and wrote the paper. C.M. performed the research, designed the research study, analyzed the data, and wrote the paper. The manuscript was created using the SQUIRE 2.0 guidelines [11].

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