Leslie J. Hamilton Carlos F. Lerner Angela P. Presson Thomas S. Klitzner

Transcription

1 DOI /s Effects of a Medical Home Program for Children with Special Health Care Needs on Parental Perceptions of Care in an Ethnically Diverse Patient Population Leslie J. Hamilton Carlos F. Lerner Angela P. Presson Thomas S. Klitzner Ó Springer Science+Business Media, LLC 2012 Abstract The Pediatric Medical Home Program at UCLA enrolled 41 patients in a primary care model focused on providing intensive care coordination for medically complex, ethnically diverse children with special health care needs (CSHCN) in our Pediatric Resident Continuity clinic. We sought to determine the effect of our program on parental satisfaction, and to compare differences in parental satisfaction between English and Spanish speaking patients. The Medical Home Family Index, developed by the Center for Medical Home Improvement, was administered to a total of 22 participating parents, in the family s primary language by a native speaker, at various times after enrollment in the program. Survey data and language effects were analyzed. The 36 standardized mean scores for the 15 Spanish speaking families were significantly higher (8.5 points higher) than the mean scores from the seven English speaking families (p = 0.003). Although no statistically significant differences were noted in individual questions between Spanish and English speakers, a trend towards more positive responses by Spanish speakers was noted in questions regarding physician-patient communication (p = 0.054) and familycenteredness (p = 0.053). Our results suggest that a primary care model focused on providing intensive care coordination produces positive parental perceptions of the organization and delivery of primary care services in a L. J. Hamilton (&) C. F. Lerner T. S. Klitzner Department of Pediatrics, Mattel Children s Hospital, UCLA Children s Health Center, 200 UCLA Medical Plaza, Suite 265, Los Angeles, CA 90095, USA Leslie.J.Hamilton@kp.org A. P. Presson Department of Pediatrics/Biostatistics, Mattel Children s Hospital, UCLA, Los Angeles, CA, USA medically complex population of CSHCN. The main finding of the study is that utilizing the AAP s approach to the medical home model, emphasizing family-centered and culturally competent care, can produce higher satisfaction scores in Spanish speaking parents when compared to English speaking parents. Keywords Medical home Children with special health care needs Care coordination Parent assessment Abbreviations CSHCN Children with special health care needs MHFI Medical Home Family Index CMHI Center for Medical Home Improvement AAP American Academy of Pediatrics Introduction It is estimated that CSHCN make up nearly 20 % of the pediatric population in the US (or 12.6 million children nationally) and represent approximately 80 % of pediatric health care utilization spending [1]. The Maternal and Child Health Bureau, in conjunction with the American Academy of Pediatrics (AAP) characterize CSHCN as being at increased risk for chronic physical, developmental, behavioral, or emotional disabilities and requiring a level of health services beyond that required by children generally [2]. A subgroup of CSHCN, those with the most complex chronic conditions, are surviving in greater numbers and living longer, becoming a growing component of the pediatric population. This emerging population of children with complex medical conditions presents

2 unique challenges to general pediatricians because of the extraordinary amount of time required for intensive care coordination [3]. Previous authors have found that care coordination is a key element for ensuring that CSHCN receive continuous, quality health care, yet CSHCN are at high risk for reporting unmet needs and lack of care coordination by primary care providers [4 7]. To address this situation, the American Academy of Pediatrics has promoted the concept of the medical home, which defines an approach to practice-based primary care coordination for all children. In the vision promoted by the AAP, the medical home is not meant to be merely a centralized location of a patient s medical records, but a concept of primary health care delivery that is coordinated, continuous, comprehensive, accessible, family-centered, culturally competent, and compassionate [8]. Based on this foundation, in 2007, the AAP, the American Academy of Family Practitioners, the American College of Physicians, and the American Osteopathic Association endorsed Joint Principles of the Patient-Centered Medical Home [9]. Because of the unique and often unmet needs of CSCHN and their families, the availability of an effective primary care medical home is of particular importance to this pediatric population [5]. Medical home models have been shown to reduce medical resource utilization [10], increase patient and family satisfaction, and improve health-related outcomes for CSHCN [11]. One study found that CSHCN with the most severe conditions received the greatest benefit from a medical home intervention [12]. A significant impetus for implementation of the medical home concept is its potential to redress disparities in health care for ethnic minorities and patients of lower socioeconomic status. Studies have shown that CSHCN with low socio-economic status, minority racial and ethnic status, and chronic disease are at a significantly increased risk of reporting dissatisfaction with medical care and a lack of family-centered care [13, 14]. CSHCN with non-english speaking parents have been shown to be at increased risk of reporting dissatisfaction with healthcare delivery [15] and twice as likely to report a lack of family-centered care and a lack of care coordination [16]. The Pediatric Medical Home Program at UCLA is a primary care model focused on providing intensive care coordination for medically complex CSHCN modeled on the AAP medical home principles. We sought to determine the effect of a care coordination program, developed with a focus on cultural competence and family-centered care, on parent perceptions of the quality, organization and delivery of primary care services to medically complex CSHCN by using the Medical Home Family Index survey (MHFI), developed by the Center for Medical Home Improvement [17]. We hypothesized that our Medical Home Program would promote enhanced perceptions which would be reflected in positive parent responses to this survey. We further hypothesized that such an approach would address the gap in family satisfaction between English and Spanish speaking families. Methods The Pediatric Medical Home Program at UCLA was created in 2003, with funding from the Healthy Tomorrows Partnership for Children. The goals of the program are (1) to implement a primary care coordination program within our Pediatric Resident Continuity clinic for the most medically complex CSHCN in the clinic s patient population; (2) to build a pediatric resident physician training curriculum based on medical home principles and best practices; (3) to foster pediatric medical home health services research; and (4) to increase community awareness and involvement. The Pediatric Medical Home Program at UCLA initially enrolled 41 patients in a pilot program designed to provide care coordination for medically complex, ethnically diverse, and often socially fragile CSHCN. This patient population has been described as a subgroup of CSHCN with high intensity care coordination needs [18]. The distinguishing features of our program (which are discussed further below) are: (1) a focus on intensive care coordination; (2) a designated full-time, bilingual family liaison; and (3) a part-time general pediatrician who develops, maintains, and manages a written care plan for each patient. Enrollment Criteria Children are eligible for the Pediatric Medical Home Program at UCLA if they (1) are residents of Los Angeles County; (2) receive their primary pediatric care in the Pediatric Resident Continuity Clinic at the Mattel Children s Hospital; and (3) have multiple serious chronic medical conditions. Operationally, patients meet the last criterion if they had at least two conditions which make them eligible for two distinct subspecialty care centers as defined by eligibility criteria for California s Title V program for CSHCNs, California Children s Services (CCS). Eligible conditions include genetic disorders such as Trisomy 21 or DiGeorge syndrome, complex congenital heart disease, gastrointestinal disease, neurological or musculoskeletal disorders. Patients with solid organ transplants are excluded and all patients must be less than 15 years of age at the time of enrollment. Patients are referred to the Medical Home Program by pediatricians, pediatric subspecialists, social workers, and pediatric residents who perceive that these patients (1) are sufficiently

3 medically complex to require intensive care coordination; and (2) are not receiving adequate care coordination due to their multiple medical conditions, social situation, or other perceived unmet needs. Study Population The study population consists of patients enrolled in the Medical Home Program between September 2003 and June Of these 41 patients, 14 families reported being primary English speakers, 27 families reported being primary Spanish speakers. All 41 patients were recipients of Medicaid (family income \200 % FPL). We have previously reported on these 41 patients, including providing a detailed description of patient characteristics such as age, gender and specialty services [10.] The patients ranged in age from 1.6 to 13.6 years and received ongoing care from an average of 3.5 ± 1.3 pediatric subspecialists (range, 2 6) [10]. Medical Home Program Structure The Pediatric Medical Home Program resides within the Pediatric Resident Continuity Clinic at the Mattel Children s Hospital. This clinic runs 11,000 outpatient visits per year. Our Medical Home Program was staffed by one full-time family liaison alone until July 2005 when a 50 % dedicated general pediatrician was added. The position of family liaison is an innovative aspect of this program. The position description for the family liaison does not require a medical background. Rather, it emphasizes organizational, interpersonal, and cultural skills and aptitudes, as well as experience with community agencies. The family liaison s duties include acting as a bilingual healthcare system navigator and first-line care coordinator, doing triage of parents questions and concerns (such as questions regarding authorizations, appointment scheduling, referrals, or medical records), ensuring that the care plan is implemented for each patient, obtaining outside medical records, and obtaining insurance authorizations. The family liaison also forms relationships and interacts with community agencies such as the school system and early intervention providers. The part-time dedicated general pediatrician creates and maintains comprehensive care plans for all patients, manages all medical questions, and supervises in all general pediatric visits. At the time of enrollment in the program, each patient undergoes an extended history and physical exam, and a detailed care plan is developed by the team. In addition, patients receive an All About Me Binder, which includes a problem list, care plan, medication list, and physician contact information. This binder, which acts as the family s written care plan, is updated at all subsequent visits and serves as a ready resource of medical records and information for other health professionals. Our program supports a collegial environment, with an emphasis on communication and encouragement of shared information between all members of the team patients, families, family liaisons, and physicians. The family liaison and the general pediatrician work together, along with pediatric residents, social workers, and other staff, to build trust partnerships with each family, with the explicit understanding that the parent is an expert in the care of their child, and a care plan is only meaningful if the family is intentionally involved in its development. A Parent Advisory Group that meets monthly provides a mechanism for families to participate in the development of the program. Questionnaires Although several tools exist to address family experiences of care for Children with Special Health Care needs, our intent was to specifically focus on elements related to the Medical Home principles as articulated by the American Academy of Pediatrics. To our knowledge, at the time of this study, there were no validated survey instruments that fulfilled this criterion, leading us to select the Medical Home Family Index. The Medical Home Family Index (MHFI), developed by the Center for Medical Home Improvement, is a survey tool focusing on family experiences of health care that has been piloted in 10 practices [19]. The MHFI is a 37 question survey (Appendix 1). One of the questions is a written response, and was not factored into these results. Of the other 36 questions, 25 have 4-scale answers (never/sometimes/often/always) and 11 have 2-scale answers (yes/no). The MHFI was administered to a total of 22 participating parents at various times after enrollment in the program, in the family s primary language by a native speaker who was not involved directly in the program. All 41 families were approached, either in person or by telephone, regarding participation in the study. Twenty-two families were willing and available to participate. All 22 participating parents were surveyed between 6 and 18 months after the time of enrollment in the program; were only surveyed once; and each represents the parent of 22 separate, unrelated children. The study was approved by the Institutional Review Board at UCLA and consent was obtained from all parents prior to their participation (UCLA IRB # G ). Statistical Analysis For comparisons in responses between English and Spanish speakers, Wilcoxon rank sum tests were used for all 4-scale questions and a Chi-squared tests for 2-scale questions. We tested for differences between English [7] and Spanish [15]

4 speaking families by comparing their overall mean scores and results for individual questions. To standardize the 4-scale-question scores and 2-scale-question scores, responses were transformed to a % scale, so that answers of 1 4 in the 4-scale questions corresponded to 25, 50, 75 and 100 %, and answers of 0 1 on the 2-scale questions corresponded to 0 or 100 %. Results The mean scores for the 4-part questions ranged from 2.6 to Two questions regarding family-centeredness received the highest scores (mean scores 3.91, with 20/22 families selecting always, and 2/22 often ): When I call the office, staff respect our needs and requests, and My PCP listens to my concerns and questions. Conversely, two questions regarding care plans received among the lowest scores: Planning of care for my child includes long-term goals (2.9/4), and My primary care provider/ staff work with our family to create a written care plan for my child (2.9/4). Among the yes/no questions, 22/22 families agreed that Office providers or staff who are involved with my child s care know about their condition, history, and our concerns and priorities., while only 5/8 agreed that My PCP assists me in finding adult health care services for my child (only eight parents indicated that this question applied to them due to their child s age). The 36 standardized mean scores for the 15 Spanish speaking families were 8.5 points higher than the mean scores from the seven English speaking families (p = 0.003, Fig. 1). No statistically significant differences were noted in individual questions between Spanish and English speakers. A trend towards more positive responses by Spanish speakers was noted in two questions: My primary care provider uses helpful ways to communicate with my child. (p = 0.054) and I have seen changes made at the office as a result of my suggestions or those made by other families (p = 0.053). Discussion Our results suggest that a primary care model focused on providing intensive care coordination, using medical home principles, to low-income, ethnically diverse children with complex health care needs in an academic medical center can produce positive parental experiences for patients and families whose primary language is English or Spanish. Although the survey instrument is not validated, our scores nevertheless compared favorably with those obtained in other settings [19]. Results of individual questions suggest Scores Distributions of mean question scores by language (p-value = > BT) English Language Spanish Fig. 1 These boxplots demonstrate the standardized scores for all MHFI survey questions for English and Spanish speaking families that families perceive our program to be family-centered, with 20/22 families indicating that staff always respect their needs and requests, and that the PCP always listens to their concerns and questions. Conversely, the survey highlights opportunities for improvement, particularly with regard to development of long-term care plans and transition planning. Patient and parental satisfaction with medical care are an important measure of the quality of health care delivery. Studies have shown that satisfaction with care can affect key health behaviors including switching providers or health plans, patient compliance, and filing lawsuits [20]. Therefore, improving parental satisfaction for an at-risk population, such as our patient population, is an important step towards improving health outcomes for CSHCN, who have been shown to have lower satisfaction with health care delivery and poorer health outcomes than children generally [13, 21 24]. Studies have shown that our patient population CSHCN with low socio-economic status, minority racial and ethnic status, and chronic disease are at a significantly increased risk of reporting dissatisfaction with medical care and a lack of family-centered care [13, 14]. Also, there is a significant association between the severity of a child s medical condition, especially the extent of their functional limitation, and dissatisfaction with health care [18, 25]. Our survey results suggest intensive programs such as ours can lead to high family satisfaction even in such populations. CSHCN with non-english speaking parents have been shown to be at increased risk of reporting dissatisfaction with healthcare delivery [15] and twice as likely to report a

5 lack of family-centered care and a lack of care coordination [16]. We hypothesized that by providing a culturally effective program with bilingual staff and mechanisms for family input (such as the Parent Advisory Group), these health disparities could be redressed. Indeed, Spanishspeaking parents reported higher satisfaction scores than our English-speaking parents. Although no statistically significant differences were noted in individual questions between Spanish and English speakers, a trend towards more positive responses by Spanish speakers was noted in two questions pertaining to family-centeredness: My primary care provider uses helpful ways to communicate with my child, and I have seen changes made at the office as a result of my suggestions or those made by other families. Our findings suggest that programs built around family-centeredness and cultural competence, core elements of the AAP s description of the medical home, may be key contributors to overcoming the traditional language effects on patient satisfaction in this at-risk population. Our study has several limitations. For example, the survey instrument has not been fully validated. In addition, surveys were conducted at random times after enrollment in the Pediatric Medical Home Program. While all patients had been enrolled for at least 1 month before survey data was collected, the length of time in the program was variable. As a pilot study, the analysis was limited by small numbers, by the lack of a comparison group within our institution (aside from comparisons of English and Spanish speaking patients), and by the possibility of reporting bias which may have resulted by using language-specific surveys for English and Spanish speaking families. Finally, our sample size did not allow us to explore whether factors such as the number of visits to clinic, ethnicity, families prior experiences with the health care system, or the medical fragility of the patient, impact family satisfaction. We are actively working to expand the program to include all CSHCN within the Pediatric Resident Continuity Clinic, and currently serve over 130 families, with a plan to expand to 300 patients. It is yet to be determined whether this model will continue to produce positive parental satisfaction scores for a larger group of patients. A planned larger prospective study can address some of the methodological limitations of this study. In conclusion, our results suggest that a primary care model, focusing on intensive care coordination, utilizing medical home principles can produce positive parental perceptions of the organization and delivery of health care services to CSHCN, independent of primary language. Acknowledgments The Pediatric Medical Home Program at UCLA has been supported by a Healthy Tomorrows Partnership for Children grant from the American Academy of Pediatrics and the Health Resources and Services Administration (H17MC00406), as well as grants from the Skirball Foundation and the Atlas Family Foundation. Conflict of interest The authors have no financial disclosures or conflicts of interest to declare. No honorarium, grant, or other form of payment was given to anyone to produce this manuscript. Appendix 1 See Table 1. Table 1 The Medical Home Family Index 1. Through this practice/office I can get the health care that my child needs when we need it. 2. When I call the office (a) Staff know who we are (b) Staff respect our needs and request (c) Staff remember any special needs or supports that we have asked for (d) We are asked if there are any new needs requiring attention 3. My primary care provider (PCP) uses helpful ways to communicate (e.g. explaining terms clearly, helping us prepare for visits, , or encouraging our questions): (a) With me (b) With my child 4. My PCP asks me to share with him/her my knowledge and expertise as the parent or caregiver of a child with special health care needs (CSHCN). 5. I am asked by our PCP how my child s condition affects our family (e.g. the impact on siblings, the time my child s care takes, lost sleep, extra expenses, etc.). 6. My PCP listens to my concerns and questions. 7. Planning of care for my child includes (a) The writing down of key information (e.g. recommendations, treatments, phone #) (b) Setting short term goals (e.g. for the next 3 months)

6 Table 1 continued (c) Setting long term goals (e.g. for the next year or more) (d) Thorough follow-up with plans created 8. My primary care provider and staff work with our family to create a written care plan for my child. 9. I receive a copy of my child s care plan with all updates and changes. 10. My primary care provider (PCP) and his/her office staff (a) Use and follow through with care plans they have created (b) Use a care plan to help follow my child s progress (c) Review and update the care plan with me regularly 11. My PCP has a staff person(s) or a care coordinator who will: (a) Help me with difficult referrals, payment issues, and follow-up activities (b) Help to find needed services (e.g. transportation, durable medical equipment or home care) (c) Make sure that the planning of care meets my child and my families needs) (d) Help each person involved in my child s care to communicate with each other (with my consent). 12. When or if I ask for it, our PCP or office staff help me to: (a) Explain my child s needs to other health professionals (b) Get my child s school, early care providers or others to understand his/her 13. Someone at the office is available to review my child s medical record with me when or if I ask to see it. 14. Office providers or staff who are involved with my child s care know about their condition, history, and our concerns and priorities. 15. My PCP or his/her office staff sponsor activities to support my family (e.g. support groups, parent skill building or how to support other parents). 16. Office staff help me to connect with family support organizations and informational resources in our community and state. 17. My PCP is a strong advocate for the rights and services important to children with special health care needs and their families. 18. My PCP assists me in finding adult health care services for my child. 19. My primary care provider (PCP) and office staff organize and attend team meetings about my child s plan of care that include us and outside providers (when needed). 20. My PCP and office staff organize and attend events to talk about concerns and needs common to all children with special health care needs (CSHCN) and their families. 21. I have seen changes made at the office as a result of my suggestions or those made by other families. 22. I know the practice has conducted surveys, focus groups, or discussions with families (in the last 2 years) to determine if they are satisfied with their children s care. 23. From my experience, I believe that my PCP and the staff at his/her office have a commitment to provide the quality care and family supports that we need. The 25 questions that have 4-scale answers (never/sometimes/often/always) are in plain text and the 11 questions that have 2-scale answers (yes/ no) are in italics References 1. Newacheck, P., et al. (1998). An epidemiologic profile of children with special health care needs. Pediatrics, 102, Council on Children with Disabilities, & American Academy of Pediatrics. (2005). Care coordination in the medical home. Pediatrics, 116, Antonelli, R. C., Stille, C. J., & Antonelli, D. M. (2008). Care coordination for children and youth with special health care needs: A descriptive, multi site study of activities, personnel costs, and outcomes. Pediatrics, 122(1), e209 e Strickland, B. B., et al. (2009). Access to the medical home: New findings from the National survey of children with special health care needs. Pediatrics, (6), e996 e Palfrey, J. S., Levy, J. C., & Gilbert, K. L. (1980). Use of primary care facilities by patients attending specialty clinics. Pediatrics, 65(3), Antonelli, R. C., & Antonelli, D. M. (2004). Providing a medical home: The cost of care coordination services in a community-based, general pediatric practice. Pediatrics, 113(5 Suppl), McAllister, J. W., Presler, E., & Cooley, W. C. (2007). Practicebased care coordination: A medical home essential. Pediatrics, 12, Medical Home Initiatives for Children with Special Needs Project Advisory Committee, & American Academy of Pediatrics. (2002). The medical home. Pediatrics, 110(1), Klitzner, T. K., Rabbitt, L. A., & Chang, R. K. (2010). Benefits of care coordination with complex disease: A pilot medical home project in a resident teaching clinic. Journal of Pediatrics, 156(6), Homer, C. J., et al. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122(4), e922 e Palfrey, J. S., et al. (2004). The pediatric alliance for coordinated care: Evaluation of a medical home model. Pediatrics, 113(5 Suppl), Thompson, L. A., et al. (2009). The impact of insurance on satisfaction and family-centered care for CSHCN. Pediatrics, 124, S420 S427.

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