EXCELLENT SURVIVAL rates after liver transplantation in children have increased the chances that pediatricians and other primary care physicians will have a pediatric liver transplant patient in their practice. Advances in all aspects of transplantation, including immunosuppression, surgical techniques, and perioperative management, have made liver transplant the treatment of choice for children with end-stage liver disease.1-2 These improvements have also substantiated the likelihood that such children will return home from the liver transplant center (LTC) and require routine health care.3
Previous outcomes research has shown that children with liver transplants are hospitalized less, take fewer medications, attend more school, and interact more appropriately with their peers than they did before transplantation.4-7 Routine health care of such children requires a delicate balance between promoting both physical and psychosocial growth, and maintaining graft viability through immunosuppression.6-7 Health care providers must also feel comfortable monitoring and differentiating common maladies from complications of transplantation, including rejection, opportunistic infections, and lymphoproliferative disorders.8
In the current era of health care reform, there is emphasis on empowering pediatricians and other primary care providers to treat complex patients in their offices, with appropriate assistance from specialists.9 This linear model anticipates that parents of children who have had liver transplants will seek all health care directly from their child's pediatrician, who in turn will consult the LTC as needed. However, it is anecdotally well accepted that many parents call directly to the LTC with concerns about their child's health. Conversely, many designated pediatricians do not feel comfortable providing health care for liver transplant recipients.
The purpose of this study was to examine the role of pediatricians in the outpatient care of children with liver transplants. By surveying families and designated primary care providers, we sought to (1) document parent and physician tendencies to consult an LTC for posttransplantation health issues; (2) assess levels of physician comfort providing posttransplantation care and their impact on health care delivery and liver transplant outcomes; and (3) identify factors that strengthen physician confidence in providing care for such children.
PATIENTS AND METHODS
The University of California in San Francisco (UCSF) established a Pediatric Liver Transplant Program with its first pediatric transplant in 1988. One hundred ten children received transplants at UCSF from February 1, 1988, through October 31, 1996, with a 92% overall survival rate. Of these children, 82 are actively enrolled in the UCSF Pediatric Liver Transplant Program and receive care on site from pediatric hepatologists, surgeons, nurse practitioners, nutritionists, social workers, and financial counselors, all specializing in pediatric liver transplantation. In addition to scheduling periodic posttransplantation follow-up visits at UCSF, the Pediatric Liver Transplant Program also seeks to identify a primary care physician for each child enrolled, so that ongoing care can be optimally arranged. An up-to-date list is maintained by the Liver Transplant Program of all designated primary care providers, almost all of whom have received training in general pediatrics.
The parents and pediatricians of all living children with liver transplants enrolled in the UCSF Pediatric Liver Transplant Program received a mailed questionnaire in October 1996 to complete and return to us. Initial contact letters, questionnaires, and consent forms were all approved by the UCSF Committee for Human Research. We excluded parents and physicians of children who had died after transplantation, as well as parents and physicians involved in active litigation concerning issues surrounding a child's transplantation. These patients were excluded both out of compassion and respect for privacy, and to minimize potential bias and to maintain a current focus on our outcome measures.
Parents completed a different questionnaire from that of pediatricians, but both were given unlimited time to complete their surveys. Pilot testing estimated completion time of both surveys at 15 minutes. Only 1 parent was necessary to complete the parent questionnaire; however, we allowed parents to participate together as they wished. In addition, non–English-speaking families were encouraged to use a bilingual member of the family to translate the questionnaire. In this way, families who spoke Arabic, Cantonese, Mandarin, Spanish, and Vietnamese were included. Written consent was obtained, and all participants were guaranteed anonymity and complete confidentiality.
Both the parent and the physician questionnaires were designed to identify (1) demographic information about liver transplant recipients, their families, and their physicians; (2) management patterns of pediatricians; (3) educational resources used by physicians caring for pediatric liver transplant recipients; (4) perceptions of families and pediatricians about their working relationships with each other and with the LTC, and their satisfaction with those relationships; and (5) perceptions of families and pediatricians about the quality of life of pediatric liver transplant recipients, with an emphasis on the children's level of functioning and school experience.
All questions in both the parent and physician questionnaires, except those relating to demographics, were framed around 3- or 5-point Likert scales, providing detailed sensitive measures of all participants' beliefs and perceptions. Demographic questions about physicians' practices and patient populations were based on a previously validated instrument.10-11 Demographic questions about families' ethnicities, incomes, and health insurance directly paralleled physicians' questions about their patient populations, and included asking parents to self-describe their ethnicities, their family incomes, and their child's main source of health insurance.
All data were analyzed with the EpiInfo Version 6.0 software package (USD Inc, Stone Mountain, Ga). Continuous variables were compared by means of Student t tests and analyses of variance, while discrete variables were compared with 
2 analyses. Responses of parents and pediatricians of the same child were compared and analyzed between groups so as to best characterize the direct impact of each others' beliefs and practices on their perceptions of the child's posttransplantation status.
RESULTS
STUDY POPULATION
In all, 73 of 82 families and physicians of children enrolled in the UCSF Pediatric Liver Transplant Program who had undergone transplantation before October 1996 were contacted to participate in the study. The families and physicians of 5 children who died and those of 4 children involved in active litigation were excluded per study criteria.
Of the participants contacted, 61 (84%) of 73 families and 54 (81%) of 67 physicians responded to the survey. Two of the physicians contacted had 2 patients each who had received transplants at UCSF, while 4 (5%) of the 73 families had no identified primary care provider other than the pediatric hepatologist at UCSF. Thirty-two sets (44%) of families and pediatricians contacted were located in California, while 29 (40%) were located out of state. An additional 11 sets (15%) of families and physicians were located overseas, in countries as diverse and distant as Guam and Saudi Arabia. Six parents and 4 pediatricians opted to return an included refusal postcard rather than complete the survey. The remainder of nonresponders (including 5 international sets of parents and physicians) did not reply at all.
PARENT, PHYSICIAN, AND PHYSICIAN PATIENT POPULATION DEMOGRAPHICS
In October 1996, the average age of living children enrolled in the liver transplant program at UCSF since February 1988 was 7 years. Age at transplantation for children who underwent transplantation at UCSF between February 1, 1988, and October 31, 1996, ranged from 2 months to 16 years, with a median age of 2 years. Children of parents responding were on average 24 months from the date of transplantation, with a range of 1 to 96 months.
Table 1 summarizes demographic information about parents and physicians who completed the questionnaire, as well as physician mean estimates of their patient populations.
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Table 1. Patient, Physician, and Physician Practice Self-reported Demographics of Study Population
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PHYSICIAN MEDICAL TRAINING
The great majority of physicians (46 [85.7%]) reported receiving pediatric training in a university-affiliated tertiary care referral center. Of the responding physicians, 37 (68.4%) categorized themselves as general pediatricians; 7 (12.7%), as family practitioners; 8 (15.2%), as pediatric gastroenterologists; and 2 (3.7%), as gastroenterologists. Physicians reported that they had been in practice a mean (± SD) of 13.2 ± 8.3 years, although answers ranged from 1 to 33 years.
PARENT REPORTS OF CHILDREN'S SCHOOL EXPERIENCE
Of the parents, 65.5% (40/61) reported their children to be attending school, with 14 (22.5%) of 61 school-attending children reported to be in preschool or kindergarten, 24 (40%) in first through fifth grades, and the remainder in junior high and high school; 18 (29.7%) of the parents reported that their children had missed more than 20 school days in the past year because of illness.
Twenty-four children were reported by their parents to receive grades at school, with a mean reported standard grade-point average of 2.6 of the standard 4.0. Of the parents, 17.4% reported their grade-receiving children to have a current grade-point average of 4.0. No parents reported their children to be failing in school.
SELF-REPORTED PARENT AND PHYSICIAN RESPONSES TO MEDICAL ISSUES ARISING IN CHILDREN WITH LIVER TRANSPLANTS
Table 2 summarizes parent responses to questions about their likelihood of calling the LTC vs calling their pediatrician when faced with medical issues in their posttransplantation children.
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Table 2. Parents' Mean Responses to Questions About Who They Are More Likely to Call When Specific Medical Issues Arise
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Table 3 summarizes the self-reported routine practices of the designated primary care providers in consulting the LTC vs managing specific medical issues on their own. In a related question, 24 (66%) of 36 pediatricians reported administering vaccinations to liver transplant patients, with 28 (77.7%) routinely consulting the LTC before administering live vaccines.
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Table 3. Physicians' Mean Responses to Questions About How Often They Are Likely to Call the LTC for Assistance When Dealing With Specific Medical Issues
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In general, pediatricians and parents were more likely to preferentially seek out the LTC when encountering almost all medical issues, except simple infections, such as otitis media.
PARENT AND PHYSICIAN SATISFACTION WITH HEALTH CARE AND OUTCOMES OF CHILDREN WITH LIVER TRANSPLANTS
All questions to parents and physicians about their satisfaction with care provided posttransplantation children are summarized in Table 4.
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Table 4. Parent and Physician Measures of Children's Quality of Life After Transplantation, Including Overall Impact on Health and Level of Functioning as Compared With Peers
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Questions about parents' and physicians' beliefs and perceptions of children's quality of life outcomes after transplantation are summarized in Table 5. Respondents were asked to score (1) their feelings about the impact of the transplant on their child's or their patient's health and (2) their sense of their child's or their patient's level of functioning as compared with his or her peers. Additionally, when asked about their sense of their child's enjoyment of school after transplantation, 47 (76.4%) of 61 parents reported that their child enjoyed school very much.
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Table 5. Satisfaction of Parents and Physicians With Coordinated Care and Communication Between Liver Transplant Center (LTC) and Pediatrician of Children With Liver Transplants
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PHYSICIAN COMFORT LEVELS IN CARING FOR CHILDREN WITH LIVER TRANSPLANTS, AND THEIR IMPACT ON CHILDREN'S OUTCOMES
When rating their comfort levels in caring for children with liver transplants, only 4 (8.9%) of 44 primary care physicians reported feeling comfortable providing all comprehensive care for their liver transplant patients, with only minimal assistance from the LTC, while most (36 [82.2%]) reported being most comfortable sharing responsibility for primary and specialized care with the LTC. The remaining 4 (8.9%) characterized the LTC as providing both primary and specialized care for the patient, while they, as the primary physician, were most comfortable assisting.
There was no significant effect of pediatrician comfort levels in caring for children with liver transplants on their own tendencies to consult the LTC for assistance in the medical management of such patients. Similarly, pediatrician comfort levels had no effect on their own judgment of patients' posttransplantation quality of life. Nevertheless, pediatrician comfort levels in caring for pediatric liver transplant patients clearly had an impact on parent responses to the questionnaire (see Table 2, Table 4, and Table 5). The more comfort pediatricians reported in providing both primary and some degree of specialized care for the patient, the more likely parents were to report that they contacted their designated primary care provider first, instead of the LTC, when encountering posttransplantation medical issues (Table 2). Also, the more comfortable pediatricians felt about providing primary and specialized care for transplant patients, the more the patients' families perceived (1) that the primary care physician worked well with the LTC to coordinate care (P<.03); (2) that the LTC was informed about the patient's outpatient health (P = .001); and (3) that the pediatrician was also up-to-date and informed about the child's health (P<.001) (Table 5).
For their part, the more comfort pediatricians reported about providing comprehensive care for transplant patients, the more pediatricians themselves reported higher levels of satisfaction with the care provided their patient by the LTC (P<.03) (Table 5). Finally, the more comfort the pediatrician reported about providing comprehensive care, the more parents perceived that the liver transplant had improved their child's health (P<.03) and that their child enjoyed school (P = .08) (Table 4).
FACTORS THAT MAY INCREASE COMFORT LEVELS OF DESIGNATED PRIMARY CARE PROVIDERS IN CARING FOR CHILDREN WITH HEPATIC ALLOGRAFTS
There were few factors identified through this questionnaire that increased pediatrician comfort levels in caring for children with liver transplants. Physician and patient demographics, including ethnicity and patient payment methods, had no significant influence on physician comfort levels. Neither did pediatrician years in practice, months of experience caring for the liver transplant recipient in question, or satisfaction with communication and care provided by and with the LTC. Furthermore, there was no difference in comfort levels among patient-designated pediatricians who described themselves as family practitioners.
One factor that did emerge as playing a role in increasing physician comfort in caring for children with liver transplants was the primary source of information used by the physician: Although 16 (44.4%) of 36 pediatricians used a manual provided by the LTC as a primary source of information regarding the care of liver transplant patients, and 14 (37.8%) of 37 reported reading medical journals, only 7 (15.9%) of 44 primary care providers who reported attending a continuing medical education course on pediatric liver transplantation felt significantly more comfortable providing comprehensive care for their pediatric liver transplant patients (P = .05).
Finally, while most living children with liver transplants at UCSF are treated by general pediatricians, 10 (18.9%) of the 53 patient-designated pediatricians who responded to the questionnaire described themselves as having received some training in pediatric gastroenterology. Perhaps not surprisingly, physicians trained in pediatric gastroenterology were more likely to have more than 1 liver transplant patient in their practice (P<.001) and, in general, reported feeling more comfortable than other pediatricians in caring for children with liver transplants (P<.005). Nonetheless, pediatricians trained in pediatric gastroenterology were no less likely than other pediatricians to call the LTC for assistance with all medical issues queried, including administering vaccinations (P = .24).
COMMENT
During the past decade, great improvements in pediatric liver transplantation have actualized the need for successful posttransplantation health care. Increasing survival rates have ensured that most children will return home from the LTC and require routine care from a pediatrician. However, a poor understanding of working relationships between patients, primary care pediatricians, and consulting LTCs severely undermines the optimal coordination of such care.
In a reality that is not consistent with many third-party health care models, our study confirms that the LTC absorbs much of the burden of long-term health care for children with liver transplants. Parents frequently call the LTC directly with health questions about their child, bypassing their pediatrician. Pediatricians also consult the LTC regularly and generally report that they feel uncomfortable providing care for posttransplantation children.
The results of our study also indicate that routine health care and long-term outcomes of children with liver transplants are strongly influenced by beliefs and perceptions of both parents and primary care pediatricians. Most significantly, the degree to which children's designated pediatricians feel comfortable providing comprehensive posttransplantation care directly impacts parents' perceptions of their children's quality of life. Improving posttransplantation outcomes may therefore be dependent on increasing confidence levels of pediatricians designated to provide long-term care to such children.
Our study did not identify obvious means of increasing pediatrician comfort levels in caring for children with liver transplants. Physicians who reported using continuing medical education courses that focused on pediatric liver transplantation and physicians who reported training in pediatric gastroenterology were significantly more comfortable providing posttransplantation care. However, neither of these factors is surprising, nor offers realistic approaches to increasing pediatrician comfort. Continuing medical education courses that address the health care of children with liver transplants are few, and attendance is limited financially and geographically. Pediatric gastroenterologists are even fewer, and many children return home after transplantation to rural areas that may not have one available to provide primary care.
There were several limitations to our study. First, basing our study on the experience of a single pediatric liver transplant program limited sample size and statistical power, as well as the generalizability of its findings to other LTCs worldwide. Other LTCs may have different posttransplantation follow-up protocols and other systems of addressing posttransplantation health issues in their patients. A second limitation is that all demographic and behavioral data about both families and physicians were self-reported and may be inaccurate. Similarly, despite every effort to maintain respondent anonymity and confidentiality, self-reported satisfaction and comfort levels of both families and physicians may have been biased, especially by their feelings toward the LTC, which they knew to be the source of the questionnaire. Outcomes measures of children with liver transplants were also self-reported assessments by their parents and may be subject to bias in either direction.
To this end, a prospective diary study would provide a more accurate view of the decision-making processes behind both parents calling either their child's pediatrician or the LTC first for specific medical issues, and pediatricians seeking out the LTC for assistance vs providing posttransplantation care without consultation. Outcome measures determined by clinical examinations, school records, and developmental testing would provide a more factual assessment of children's progress after transplantation.
Nevertheless, the implications of strengthening the role of pediatricians in the management of liver transplant patients are clear: The more pediatricians feel that they are comfortable providing comprehensive posttransplantation health care, the more families of children with liver transplants feel that they can rely on their general pediatricians to address their concerns. This belief is strengthened by a perception by families that pediatricians and LTCs are working well together to coordinate successful posttransplantation care for their children, and is reflected in the optimistic views of the parents that their children were healthier after transplantation and were enjoying themselves in school. A continued dialogue with the families and physicians of children with liver transplants is necessary to further identify means to better posttransplantation health care.
