Care Coordination in the Spina Bifida Clinic Setting: Current Practice and Future Directions

Article Outline

• Abstract
• Method
  • Study Sites and Recruitment Procedures
  • Study Participants
  • Study Protocol and Data Collection Procedures
  • Data Analysis
• Results
  • Clinic Characteristics
  • Participant Characteristics
  • Goals of Care Coordination
  • Care Coordination Processes and Procedures
  • Perceived Effectiveness of Care Coordination
  • Care Coordination Barriers and Facilitators
    • Staffing issues
    • Clinic day logistics
    • Community resources
    • Intra-team communication
    • Patient and family characteristics
    • Funding
    • Communication between families and providers
• Discussion
  • Lessons Learned
  • Synthesis of Findings
  • Study Limitations
  • Recommendations for Future Research
• Conclusions
• Acknowledgment
• References
• Biography
• Copyright

Abstract 

Introduction

Although the potential benefits of care coordination are widely recognized, little is known about care coordination in the multidisciplinary spina bifida clinic setting. This study examined several aspects of care coordination in this environment.

Method

We conducted semi-structured interviews with clinic staff (N = 43) and focus groups with caregivers (N = 38) at seven spina bifida clinics in the United States.

Results

Clinic staff described several primary goals of care coordination, including coordinating multiple services during one visit to ease the burden on families. Although the structure of care coordination varied across the clinics, several clinics had a dedicated care coordinator. Barriers and facilitators to care coordination included staffing issues, clinic day logistics, community resources, and family-related concerns. Despite challenges associated with care coordination processes, clinic staff and caregivers alike believed that care coordination is beneficial.

Discussion

Study findings suggest ways that care might be coordinated optimally in spina bifida clinics. A synthesis of these findings for clinics interested in implementing care coordination or improving the care coordination services they currently offer is provided.

Key Words: Spina bifida, care coordination

Spina bifida is a complex congenital disorder affecting multiple body systems. Persons with spina bifida often have difficulty with lower body mobility, loss of bowel and bladder control, hydrocephalus, learning disabilities, and latex allergy (Centers for Disease Control and Prevention [CDC], 2007). Multiple specialists are involved in providing care to people with spina bifida, including providers with expertise in the areas of orthopedics, urology, neurosurgery, general pediatrics, developmental pediatrics, physiatry, and nursing. In addition, persons with spina bifida typically need or benefit from a variety of other services, including social work; nutrition; physical therapy; occupational therapy; wheelchair, bracing, or seating or a combination thereof; psychology or neuropsychology or both; and family support services (Brei, 2007, Kinsman et al., 2000). These services often are provided to persons with spina bifida in a multidisciplinary clinic setting^∗ (Brei, 2007).

The Spina Bifida Association (SBA) advocates the provision of ongoing, comprehensive, coordinated care throughout the life span for persons affected by spina bifida (Merkens, 2006). As described in Guidelines for Spina Bifida Health Care Services Throughout the Life Span, care coordination involves the process of organizing services in such a way that they can be used easily by people with spina bifida and their families, with the ultimate goal being to “first, teach the family, and later the young adult with spina bifida to independently navigate medical, educational, and financial systems necessary to ensure as much self-sufficiency as possible” (Merkens, 2006, p. 7). While the process of care coordination may ideally be used to promote a more child- and family-centered approach to the provision of health care, the two concepts are not synonymous. Further, although family-centered care is often used in the context of providing health care to children with special health care needs, provider-, community-, or payer-based care coordination models are also in common use (Lindeke, Leonard, Presler, & Garwick, 2002).

Early conceptions of care coordination in a multidisciplinary spina bifida clinic setting describe care coordination as performed by a single member of the patient care team, such as a pediatrician (Bunch, Cass, Bensman, & Long, 1972). In present-day spina bifida clinic settings, often the care coordinator is a nurse (Dunleavy, 2007). Typically, care coordinators are responsible for facilitating the efforts of health care providers from multiple specialties during clinic day, coordinating future clinic visits for patients, coordinating appropriate studies and referrals, and ensuring that the recommendations and treatment plans agreed upon by the team are carried out and communicated to the family and other relevant people in the community (Bunch et al., 1972, Dunleavy, 2007). The vision of care coordination in the spina bifida clinic context is also in line with recent health care reform legislation and the Patient Protection and Affordable Care Act of 2010 that promotes a patient-centered medical home model with coordinated care provided by a team of practitioners. Reported benefits of care coordination for individuals with special health care needs include fewer trips to the clinician, fewer complications, and fewer hospitalizations (Presler, 1998). Additionally, family members can benefit from better communication with medical staff, more efficient connections with community resources and supports, enhanced understanding of the goals for care, a stronger relationship with health care providers, and reduced caregiver strain (Palfrey et al., 2004). Although the potential benefits of care coordination for the provision of services to people with spina bifida are recognized widely (e.g., Brei, 2007, Bunch et al., 1972, Caldado and Loff, 2002, Dunleavy, 2007, Kinsman et al., 2000; Merkens, 2006), little is known about the process of care coordination in the multidisciplinary spina bifida clinic setting. The five main objectives of this exploratory study were to (a) describe the goals of care coordination among a sample of spina bifida clinics, (b) describe care coordination processes and procedures among spina bifida clinics, (c) examine the perceived effectiveness of care coordination among spina bifida clinics (i.e., the extent to which care coordination is beneficial for patients and their families), (d) identify perceived barriers to and facilitators for providing care coordination in spina bifida clinics, and (e) identify lessons learned and recommendations to assist staff with the process of coordinating care in spina bifida clinics.

To address the study objectives, we conducted semi-structured interviews with clinic staff and focus groups with caregivers at seven spina bifida clinics in the United States. At each of the study clinics, we conducted from five to nine staff interviews and one caregiver focus group. Interview and focus group data were examined using qualitative analysis techniques. In conjunction with other projects being conducted as part of the National Spina Bifida Program, the data collected from this study address National Spina Bifida Program goals relating to the evaluation of the role of care coordination, describing what and how care is delivered in clinics, where the gaps exist, and, ultimately, what interventions lead to the best outcomes for people affected by spina bifida. The study also contributes to ongoing efforts by other agencies (e.g., Accountable Care Organizations and the Centers for Medicare and Medicaid Services) to examine care coordination delivery systems and their outcomes.

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Method 

Study Sites and Recruitment Procedures 

We identified potential study clinics by examining the responses of the 63 clinics that completed the 2005 SBA-sponsored Spina Bifida Clinic Survey and that reported serving spina bifida patients at the time of the survey. Clinics responding to the survey were first stratified based on program size (small, medium, or large, according to the reported number of active patients younger than 21 years of age served: 1-99, 100-299, or 300-870) and level of care coordination services provided (low, medium, or high, according to the reported number of care coordination services provided: 3-7, 8 or 9, or 10 or 11).^∗ Within each of the program size by level of service categories we then selected one clinic so that the overall sample of clinics was diverse in terms of patient socioeconomic background (i.e., the percentage of clinic caseload supported by Medicaid funding), and region (East, South, Midwest, West, or Pacific). An SBA representative conducted initial clinic recruitment, and staff from a contract research firm handled subsequent communication with clinics.

A total of eight spina bifida clinics agreed to participate in the study. One clinic later dropped out of the study when the site representative determined participation was no longer feasible because of a recent reduction in staffing, yielding a total of seven study clinics. Currently 121 clinics across the United States specialize in spina bifida care and treatment (SBA, 2010); thus, this sample represents approximately 6% of spina bifida clinics nationwide.

Study Participants 

All study participants were volunteers older than 19 years of age. Interview participants were spina bifida clinic staff. Focus group participants were caregivers of children with spina bifida 2 through 21 years of age. We recruited caregivers of children who were older than 2 years of age, assuming they more likely would be familiar with the processes and procedures related to care coordination.

A representative at each of the study clinics queried potential participants about their interest in study participation. Individuals interested in participating agreed to have their name and contact information released to the contract research firm that conducted the study for scheduling purposes. At one site, a clinic representative took responsibility for scheduling all of the staff interviews, while a local SBA chapter representative recruited the focus group participants.

Study Protocol and Data Collection Procedures 

We developed a focus group moderator's guide and four staff interview guides expressly for this project. Interview guides were tailored to a staff member's position in the clinic (clinic director, care coordinator, clinician or provider, or staff person). Both the moderator's guide and the interview guides included questions related to the goals of care coordination, critical components and procedures related to care coordination, and barriers to and facilitators of effective care coordination. We further asked respondents about the effectiveness of care coordination at their respective institutions and for recommendations on how to improve care coordination services.

We collected interview and focus group data during site visits to the seven study clinics. Individual interviews lasted from 20 to 60 minutes. Each focus group included three to seven participants and lasted from 1½ to 2 hours. At six of the study sites, focus group participants received a cash incentive payment of $40. Because of site-specific restrictions concerning incentive payments, in lieu of cash incentives, $20 cards that could be used to purchase gasoline were given to focus group participants at one clinic. No monetary incentives were provided to clinic staff who participated in the study.

The institutional review board (IRB) of the contract research firm and the IRBs affiliated with the six study institutions that required local IRB review approved the study protocol and data collection instruments. The U.S Office of Management and Budget also approved this data collection effort.

Data Analysis 

We developed a codebook for qualitative data analysis based on the study objectives and important themes that emerged during data collection. The codebook contained definitions, inclusion criteria, and exclusion criteria for each code. To refine the codebook, two senior analysts independently coded the same transcripts, compared their application of codes, and reconciled coding discrepancies. During this process, the codebook was revised continually to capture emerging themes and facilitate consistent coding. The codes were used to classify text from the interviews and focus groups into categories related to each study question and theme. All transcripts were read carefully, and each segment of text was coded with one or more codes. Four qualitative researchers initially coded the same transcripts independently. After coding each transcript, analysts met to compare and reconcile their application of codes until they achieved inter-rater reliability of at least 80% for primary codes. Once inter-rater reliability of 80% was met, coders divided the remaining transcripts and proceeded to code independently. Analysts entered codes into a qualitative analysis program (QSR N6) to facilitate management and retrieval of the data. Reports were generated for each major theme, and analysts assessed the prominence of each theme and summarized the associated data.

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Results 

Clinic Characteristics 

The seven study clinics represented diverse geographic regions, with two located in the eastern part of the United States, two in the Midwest, two in the South, and one in the Pacific region. Overall, the clinics served from 150 to 600 patients (mean = 310.7, standard deviation = 149). The patient populations at the majority of the study clinics were White (≥ 75%); however, half of one clinic's patient caseload was Hispanic, with the remaining half either African American or White. Six of the seven study clinics served patients ranging in age from birth to their early twenties, and one clinic served patients into their early thirties. Two clinics provided services at no charge; at the remaining clinics, 50% or more of patients were insured by Medicaid. All study clinics served patients from the local area as well as from surrounding states, and they served patients who were from predominantly low to middle socioeconomic backgrounds.

The logistics of clinic day differed across study sites. Four of the study clinics had a designated clinic day 1 or 2 days per week, and two had 2 or 3 clinic days per month. Nearly all of the clinics saw 10 to 15 patients per day, while one served 20 to 30 patients on each of its 3 clinic days per month. Depending on the clinic, a clinic day was either a half day or a full day, and at several of the clinics, patients came to the clinic for testing prior to their other clinic-day appointments. At one clinic, specialists were allotted a time slot during which they saw patients: urologists saw patients from 11 am to 12:30 pm, orthopedists saw patients from 12 to 2 pm, and neurosurgeons saw patients from 2 to 4 pm.

Participant Characteristics 

Table 1 summarizes characteristics of participants for staff interviews and caregiver focus groups. A total of 81 persons (43 clinic staff and 38 caregivers) participated in the study. Nurse coordinators/care coordinators were categorized together because their roles as described to the interviewers were similar. The number of clinic/medical directors and care coordinators/nurse coordinators interviewed for the study (nine and 11, respectively) is more than the total number of clinics that participated in the study because some clinics had more than one staff person in these roles. The average staff tenure at the clinics was 10.5 years, with a range of 6 months to 30 years. Caregivers participating in the focus groups had been attending the clinic for an average of nearly 8 years, with a range of 1 to 18 years. One father participated in a caregiver focus group; the remainder of the participants were birth or adoptive mothers of children with spina bifida. The ages of the caregivers' children attending the clinic ranged from 2 to 21 years, with an average age of 9 years. For most of the study clinics, several of the caregiver participants lived 1 to 2 hours away from the clinic, with the rest living in the same metropolitan area as the clinic. The level of care required for the children varied widely. Some caregivers described their child's current medical needs as complex with multiple ongoing appointments, while others indicated their child's medical needs were stable and required only an annual clinic visit.

Table 1. Participant characteristics

Participant type	No.	Average no. of years at clinic (range)
Staff interviews
Clinic/medical director	9	16.6 (7.5-30.0)
Care coordinator/nurse coordinator	11	11.1 (2.0-29.0)
Specialist (neurosurgeon, urologist)	3	10.7 (2.0-18.0)
General care provider (physiatrist, developmental pediatrician)	1	10.0
Therapist (occupational therapist, physical therapist)	6	1.9 (0.5-4.5)
Social worker	5	9.9 (2.0-23.0)
Nurse/nurse practitioner	6	13.8 (2.0-25.0)
Business manager	1	2.0
Other	1	1.0
Focus groups
Caregivers	38	7.9 (1.0-18.0)

Goals of Care Coordination 

Clinic staff participants described several primary goals of care coordination. The goals most often mentioned were (a) meeting the overall needs of each child and family by looking at the child and family as a whole, (b) coordinating multiple services during one visit to ease the burden on families, and (c) helping children become more independent and reach their maximum potential. Most staff cited multiple goals for care coordination. For example, one clinic coordinator stated that the care coordination goals were to “ensure that these children with spina bifida are leading a productive or as productive, as healthy and as functioning a life as they possibly can have with that diagnosis” and “be a one-stop shopping place so that they can come and get all of those medical needs met in one appointment.” Other care coordination goals that clinic staff identified were developing a relationship with each family, facilitating better communication among team members, connecting or communicating with community services, and establishing a point of contact for each family.

Care Coordination Processes and Procedures 

The structure of care coordination varied across the study clinics. Several of the clinics designated a single staff person to implement care coordination procedures, and at one clinic two staff were designated as care coordinators. Across the clinics, care coordinators were available to perform care coordination–related activities at least 20 hours per week.

Staff from five of the clinics viewed care coordination as a team effort, even when a single staff member was designated as the care coordinator; of these, three clinics indicated that the entire team was involved, and two clinics stressed a partnership between the care coordinator and social worker to implement care coordination. Many of the clinic staff emphasized the importance of having a single care coordinator to ensure that care was coordinated effectively among team members and to serve as the primary contact person for both families and staff. Collectively, staff identified the following five care coordination tasks:

Perceived Effectiveness of Care Coordination 

Several of the study clinics created formal opportunities for families to provide feedback regarding their overall satisfaction with clinic services, but none had a formal process for measuring the extent to which care was coordinated effectively in their clinics. Perception of care coordination effectiveness among clinic staff and caregivers varied; however, most study participants believed that care coordination services were beneficial and effective for families. The majority of caregivers participating in the focus groups indicated they were happy with the clinics and the care coordination services provided, although a few caregivers saw room for improvement in the coordination of services outside the clinic setting, including services within the same hospital systems. Caregivers appreciated the efforts of clinic staff to schedule all appointments during a single visit. In the words of one caregiver, “…it's a lot easier for our family if all of our son's appointments are in one day. It makes it a very long, tiring day for all of us, but it's going to be a full day of work off for both me and my husband—whether my son has one appointment or seven appointments. It's easier financially for our family.” Caregivers also appreciated staff efforts to make referrals and link them with community resources. A few caregivers mentioned that care coordination was especially helpful when their children were first diagnosed and their families felt overwhelmed.

Many of the clinic staff described how care coordination improved care for children and families at their clinics by increasing access to care, taking the overall needs of each child and family into account, increasing continuity of care, and reducing the burden on families. Clinic staff also identified the tasks of linking families with resources and serving as a liaison between families and providers (e.g., scheduling providers or answering questions if a family did not understand a provider) as critical components of effective care coordination. Clinic staff believed that the effectiveness of care coordination could be further enhanced by improving follow-up with patients who miss appointments, by enabling providers to spend more time with families and communicating with other team members, and by offering more frequent opportunities for social interaction among children and among families, such as support groups and family interaction during the clinic day.

Care Coordination Barriers and Facilitators 

Clinic staff and caregivers of children with spina bifida identified several barriers to and facilitators of care coordination, which were grouped into discrete categories during analysis. Table 2, Table 3 summarize the content of the barrier and facilitator categories mentioned by clinic staff and caregivers.

Table 2. Summary of barriers most often mentioned by clinic staff and caregiver focus groups^∗

Table 3. Summary of facilitators most often mentioned by clinic staff and caregiver focus groups^∗

Clinic staff identified staffing issues as the greatest barrier to care coordination. Staff members indicated that staff did not have sufficient time to perform all required tasks, including spending adequate time with each patient, following up on referrals or tests, educating families, locating or learning about community services, and working with insurance companies. One clinic coordinator explained, “People don't really understand how complex these clinics really are, and so we're woefully understaffed in my opinion.” Perceived staffing shortages exacerbated this problem because nurses were performing administrative or other hospital duties, which decreased the time available to coordinate care. Clinic staff and caregivers alike expressed the need for additional types of providers to participate in clinic day as dedicated, full-time members of the clinic team beyond the core team, which generally consisted of a neurosurgeon, a urologist, an orthopedist, a nurse, and a social worker. Several staff noted the importance of also including a psychologist as part of the team. More than one staff member or caregiver also mentioned the need for a physiatrist, a gastroenterologist, a nutritionist, a wound care specialist, an occupational therapist, a pediatrician, and an insurance coordinator. Some clinics had these staff involved in their clinic or available at a hospital; however, staff interviewees stressed the importance of having these individuals in the clinics full time instead of part time or on a referral-only basis.

In addition to perceived staff shortages and the lack of particular types of staff in the clinics, caregivers mentioned other staff-related barriers, including personality conflicts with providers, disagreements with provider recommendations for care, and providers who were considered insensitive. Several caregivers noted that having residents provide care in lieu of physicians disrupted continuity of care and that working with residents in addition to physicians was burdensome.

Staffing was also the most frequently mentioned facilitator for care coordination. Because of the complexity of issues associated with spina bifida, care coordination requires staff members who are fully committed to their work and “buy in” to the overall goals of care coordination. Identifying one person to serve as a dedicated resource for family members and providers and ensuring that staff members remain up-to-date with training were also described as important for high-quality care coordination. Clinic staff discussed certain traits that they believed were essential to team members, such as flexibility, openness, and the ability to communicate. In the words of one urologist, “Well, I think that care coordination is highly dependent on the individuals who produce it, just like anything else. To really have it, you have to have the right people in the nursing positions that are diligent and detail oriented and can act as a resource for the families.” Caregivers agreed that staff were dedicated and found it helpful to have a designated contact person for questions. They also preferred having the same staff members provide care for their child over time, rather than seeing different providers at each visit.

Staff identified clinic logistics, such as the length of the clinic day, the number of providers needing to see patients in a short time span, and limited clinic space, as barriers to care coordination. To help address these issues, some clinics began conducting pre-clinic appointments to complete needed testing before the full clinic day, while other clinics began offering multiple clinic days. Despite the logistical challenges, staff believed that having multiple providers available on the same day and in the same space benefitted families and improved care. Caregivers indicated that wait times were long but, despite this barrier, most preferred the convenience of seeing all of the specialists on one day. Clinic staff noted that they would like to provide families with opportunities to interact with one another during clinic time, but most clinics were unable to facilitate this interaction because of space constraints. Caregivers also expressed the desire for increased interaction among families and children during clinic times.

While many staff mentioned that linking families with community resources or providing information about resources are critical components of care coordination, clinic staff members faced a number of challenges in this regard. The lack of adult coordinated care programs for spina bifida in local communities was of particular concern to staff at all of the clinics interviewed. Clinic staff described families as feeling they were being “kicked out” once their child was 21 years of age. Because of the large geographic areas served by the clinics, finding community resources or specific providers near where patients lived was a challenge. Coordinating communication between community providers and the clinics also was difficult, although caregivers found such communication helpful when it occurred. Additionally, identifying camps for the children or referring families to recreational and social activities was important to both clinic staff and caregivers.

Intra-team communication sometimes was difficult, primarily because of time constraints. Several clinics did not hold team meetings, even though staff and caregivers felt such meetings would have facilitated effective communication. Clinic staff indicated that working as a team contributed to comprehensive care. Communication tools such as electronic charts, whiteboards, and lighting systems identifying the order in which patients are to be seen by each member of the provider team assisted with coordinating care for patients.

Caregivers' experience with intra-team communication varied, even within the same clinic. While some caregivers stated that team members communicated well and met with each other to discuss patient care, others observed inadequate communication among team members. These caregivers felt that they were held responsible for communicating to providers what other team members had discussed with them and recommended that team meetings be held, during which providers could consult with each other and discuss each patient's plan of care.

At all of the clinics, staff viewed as a challenge the inability of some families to fully comprehend the implications and potential complications of spina bifida, provider recommendations, and appropriate expectations for their children concerning independence. Some clinic staff described challenges associated with explaining the multiple complex medical needs of children to their caregivers. The levels of understanding of families varied greatly depending on educational background, socioeconomic status, and emotional state. Clinic staff noted that these variations could have affected whether children and families followed through with recommendations, referrals, and clinic appointments. Several caregivers recognized the importance of taking the initiative and becoming actively involved in securing optimal care for their children, whether by working closely with clinic staff or by seeking additional care elsewhere.

Many families traveled long distances to attend the clinics, and some had difficulty affording gasoline or did not have transportation. A few clinics provided resources to assist with transportation, sometimes through Medicaid, but the transportation was not always reliable or convenient for families.

Study participants identified several issues related to funding as barriers. Although most of the clinics would like to have added staff to their teams, they lacked the resources to do so. Both staff and caregivers identified lack of insurance coverage or decreasing coverage for needed services as a barrier. Additionally, clinic staff found the process of working with insurance companies to be cumbersome. However, clinic staff noted the importance of helping families locate resources and financial assistance as a part of care coordination, and families appreciated this assistance when given.

Clinic staff cited lack of open communication between families and providers as a potential barrier to care coordination. One example of this was when families failed to alert providers to circumstances that impeded implementation of care instructions or recommendations—such as running out of supplies, being unable to pay for prescribed medicines, or having problems working with their children's schools.

Where it functioned well, family–provider communication was seen as a facilitator. In particular, building relationships with the families was viewed as critical to successful care coordination. Several clinic staff and caregivers noted the importance of developing long-term relationships and building trust. Designating one or more staff members to take calls and answer questions between visits also was reported to facilitate care coordination. Caregivers liked knowing whom they should contact and appreciated the staff's ability to provide useful information. A few clinics provided families with written documentation––either dictation notes or a summary of each visit and any recommendations––that could be referred to after leaving the clinic, something both clinic staff and caregivers found helpful. Caregivers also appreciated clinic staff communicating with their children in an appropriate manner, such as interacting with each child regardless of the child's age and speaking directly to each child regarding care when the child was old enough to understand.

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Discussion 

Overall, clinic staff identified three main barriers to care coordination: staffing issues (e.g., insufficient time to coordinate care), clinic day logistics (e.g., clinic days too long for families), and inadequate community resources (e.g., lack of an adult coordinated care program in each community). Clinic staff also noted important facilitators to care coordination in these same three categories, including having staff committed to providing quality care, coordinating the availability of all specialists on the same clinic day, and linking families with community resources. Other characteristics identified as important for care coordinators included being open-minded, flexible, energetic, and a team player, and having good communication and organizational skills.

Caregiver focus groups identified the main barriers to care coordination as family-related concerns (e.g., long travel distances to the clinics), staffing issues (e.g., conflicts with a particular staff member or receiving care from residents or medical students instead of attending physicians), and clinic day logistics (e.g., wait times that were too long). Although families had to travel long distances and endure long wait times on clinic days, most preferred seeing all specialists on the same day as a means to reduce the amount of time spent and costs.

Caregivers also described facilitators to care coordination, including interacting with committed staff, having staff available for questions, and knowing which staff to contact and how to reach them. Several families talked about clinic staff feeling like a part of their families.

Lessons Learned 

Findings from this study suggest the following ways in which care might be coordinated optimally in the spina bifida clinic setting:

Synthesis of Findings 

We compiled a synthesis of study findings for clinics interested in implementing care coordination or improving the care coordination services they offer (Table 4). The list is focused on the aspects of care coordination that are likely to be within clinic staff members' scope of influence, as opposed to factors over which staff might have limited control, such as staffing, reimbursement, and costs. We propose recommendations related to clinic day logistics, community resources, intra-team communication, and provider and family communication.

Table 4. Recommendations for implementation of care coordination procedures

Study Limitations 

This study had several limitations. First, only seven spina bifida clinics participated in the study. It is possible that clinics that agreed to participate might have been systematically different from clinics that did not participate (for example, the study clinics might have had more staff resources). However, we selected the clinics to represent diversity in terms of the number of patients served, type and number of care coordination services provided, patient socioeconomic background, and region of the country.

Participants for the caregiver focus groups were selected by clinic staff and might not have been representative of the full range of perspectives—in particular, they might not have represented fully the opinions of caregivers who have sought care elsewhere and no longer bring their children to the clinic. In addition, they might have had stronger opinions about clinic functions (either positive or negative) than the general caregiver population. Although clinic staff were asked to select caregivers of children with various ages and from different geographic locations, recruitment was constrained by the limited time caregivers of children with spina bifida had available to participate in focus groups. Despite attempts to recruit 10 caregivers per group, the goal of eight participants per focus group was not always met (because of no-shows or caregivers canceling on the day of the event due to weather, illness, or transportation issues).

Finally, this research did not assess the effectiveness of care coordination using quantifiable patient outcome measures.

Recommendations for Future Research 

Future research examining care coordination in the context of spina bifida clinics should (a) recruit a larger number of clinics with diverse characteristics; (b) recruit a more diverse group of caregivers, including those who no longer seek care at the clinics; (c) over-recruit caregivers to ensure the desired number of participants; and (d) assess the effectiveness of care coordination at clinics using standardized patient outcome measures.

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Conclusions 

Care coordination at spina bifida clinics can be complicated and time consuming, but clinic staff agreed that the resulting benefits to families, such as increased access to and continuity of care and reduced burden on families, were well worth the effort. The often complex needs of a child with spina bifida make it difficult for many families to coordinate care on their own. Findings from this study suggest that coordinating multiple specialist appointments on the same clinic day, linking families with community resources, and providing a resource person to address questions reduces the burden on families and facilitates more comprehensive care for children. Care coordination at the clinics often was impeded by limited staff time and support, clinic day logistics, and a dearth of community resources. Despite these barriers, clinic staff believed that care coordination was effective, yet could be improved further by finding ways to address these issues.

Likewise, caregivers appreciated the benefits of care coordination, but also identified areas that could be improved, such as reducing wait times and providing greater opportunities for interaction among families. When establishing the care coordination function in a clinic, decision makers should determine the goal of the service and the staffing effort required. Many clinic staff indicated that a full-time care coordinator position was essential to meet the needs of families, even when several team members were involved in different aspects of the coordination of care. Overall, this study provides information that may assist clinics interested in implementing care coordination or improving the care coordination services they currently offer for the purpose of improving outcomes for children affected by spina bifida and their families. The recently passed Patient Protection and Affordable Care Act (2010) advocates the provision of care coordination and case management services as an important strategy to ensure quality health care and improve health outcomes. As other entities look in earnest at the role of care coordination over the next several years, the value and the process of care coordination will become better defined and implemented.

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We thank Mary Ellen Van Booven, B.A., of Battelle for her assistance with study coordination, recruitment, coding, and compiling the study data, as well as Susan Pearce, MEd, and Betsy Payn, MA, also of Battelle, for their assistance with data collection and coding. We thank Adriane Griffen, formerly of the SBA, for her assistance with clinic recruitment as well as Kenneth Goodman, MA; Donetta Ghosh, MA, MPH; and C. Lynne Jones, RN––all formerly of Battelle––for their assistance with study design and coordination. We gratefully acknowledge the efforts of Edward Brann, MD (formerly of CDC); Vincent Campbell, PhD (CDC); Mark Swanson, MD (CDC); Jennifer Cernoch, PhD (formerly of Family Voices); Kathy Sawin, DNS, CPNP, FAAN (University of Wisconsin, Milwaukee); and Eric Levey, MD (Kennedy Krieger Institute) for reviewing an early version of the study protocol and data collection instruments. We also thank the clinic staff and caregivers who participated in this study, without whom this research would not have been possible.

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10. The Patient Protection and Affordable Care Act, H.R. 3590 (Public Law 111-148) (2010).
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11. Presler B. Care coordination for children with special health care needs. Orthopaedic Nursing. 1998;17:45–48
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12. Spina Bifida Association. (2010). Spina bifida clinics. Retrieved from http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2663669/k.690A/Spina_Bifida_Clinics.htm
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• ∗ In most multidisciplinary spina bifida clinics, care for spina bifida patients is provided on a designated “clinic day.” On clinic day, specialists and support service providers typically convene in a designated clinic space for the purpose of providing care exclusively to patients with spina bifida. In some institutions, patients might move from where the spina bifida clinic is held to other nearby facilities, usually within the same hospital, to visit specialists and other service providers.
• ∗ No large clinics were classified as offering a low number of services.