Abstract
OBJECTIVES: There is wide variation in the decision of whether to perform lumbar punctures (LPs) on well-appearing febrile infants ≤8 weeks old. Our objectives were to identify factors that influence that decision and the barriers and facilitators to shared decision-making about LP with parents of febrile infants.
METHODS: We conducted semistructured interviews with 15 pediatric and general emergency medicine physicians and 8 pediatric emergency medicine nurses at an urban, academic medical center. Through interviews, we assessed physicians’ practices and physicians’ and nurses’ perspectives about communication and decision-making with parents of febrile infants. Two researchers independently reviewed the transcripts, coded the data using the constant comparative method, and identified themes.
RESULTS: Five themes emerged for factors that influence physicians’ decisions about whether to perform an LP: (1) the age of the infant; (2) the physician’s clinical experience; (3) the physician’s use of research findings; (4) the physician’s values, particularly risk aversion; and (5) the role of the primary care pediatrician. Barriers and facilitators to shared decision-making identified by physicians and by nurses included factors related to their perceptions of parents’ understanding and acceptance of risks, parents’ emotions, physicians’ assessment of whether there is clinical equipoise, and availability of follow-up with the primary care pediatrician.
CONCLUSIONS: Differences in physicians’ values, use of research findings, and clinical experience likely contribute to decisions of whether to perform an LP on well-appearing febrile infants. Incorporation of parents’ preferences through shared decision-making may be indicated, although there are barriers that would need to be overcome.
Febrile infants ≤8 weeks old who are evaluated in emergency departments (EDs) routinely undergo extensive diagnostic evaluations to assess whether they have an invasive bacterial infection (IBI),1 including potentially life-threatening bacterial meningitis.2 Several algorithms use a combination of age, clinical appearance, and results of urine and blood tests to classify febrile infants as either low or not low risk for having an IBI.3,4 Although ∼0.5% of all febrile infants have bacterial meningitis,5 prevalence among infants classified as low risk by these algorithms may approach 0%.3,6 In deciding whether to perform a lumbar puncture (LP) on a low-risk infant, clinicians must weigh the risks of death or neurologic sequelae in the unlikely event that the infant has bacterial meningitis7 with the risks of an LP, which include stress and anxiety for parents, the potential for an unsuccessful procedure, which could lead to unnecessary hospitalization, and the extraordinarily rare serious complications of the procedure.8,9 Consequently, there is wide variation in the decision to perform LPs on low-risk febrile infants.1,10
Although differences in institutional clinical practice guidelines may explain some of this variation,10 researchers have not examined individual physicians’ perspectives on the decision to perform an LP or on including parents in the decision-making. To include judgments about whether the benefits of an LP outweigh the risks, parents’ preferences can be incorporated through a shared decision-making process in which the parent participates with the physician in making the decision.11,12 However, little is known about whether physicians currently use (or potentially would use) a shared decision-making approach for decisions about LP on low-risk febrile infants or perceived barriers and facilitators, including those identified by nurses who have an important role in communicating with parents. Our objectives were to learn (1) the factors that influence physicians’ decisions about whether to perform an LP and (2) barriers to and facilitators of shared decision-making with parents of low-risk febrile infants for decisions about LPs.
Methods
Study Design and Population
We conducted one-on-one, semistructured interviews with pediatric emergency medicine (EM) physicians and nurses from an urban, academic medical center. The pediatric EM physicians and nurses all worked in the medical center’s pediatric ED that has ∼38 000 visits annually; senior pediatric EM fellows, who practice as attending physicians in a community ED affiliated with the academic medical center, were also included. To include the perspectives of physicians who provide care to febrile infants in a general ED, we also interviewed 2 general EM physicians from the same academic medical center who worked at the center’s general ED (which does not evaluate children) as well as an affiliated general ED with an annual volume of 4000 pediatric visits per year. None of the EDs had a clinical practice guideline for management of febrile infants. The study was approved by the institutional review board, and written informed consent was obtained from each participant. A small monetary incentive was provided for participation.
Pediatric EM physicians were invited to enroll during a division meeting and through follow-up e-mails. Nurses and the general EM physicians were contacted through e-mails sent to the pediatric ED nursing listserv and to physicians who worked at the affiliated ED, and respondents were then recruited to participate. Purposeful sampling was used to specifically recruit physicians and nurses with >10 years of experience.13,14
Interviews
Individual semistructured interviews were conducted by 2 researchers (a pediatric EM attending physician and a research associate trained in qualitative interviewing) between January and September 2018. Interviews were audio recorded and were transcribed verbatim by a professional transcription service. Separate interview guides were used for physicians and nurses. Through interviews, we assessed physicians’ practices and perspectives on communication and decision-making with parents of febrile infants and physicians’ and nurses’ perceptions of shared decision-making in the ED, including with febrile infants. Interview questions were open-ended and included prompts and probes to encourage participants to elaborate and clarify responses.13 The 2 interviewers met weekly to review transcripts and iteratively revise the interview guides. Specific questions asked by the interviewers are shown in Table 1.
Interview Guide Questions for Physicians and Nurses
Data Analysis
Two researchers independently reviewed all transcripts and coded the data using the constant comparative method of grounded theory.14,15 Separate coding structures were developed for physician and nurse respondents, and the codes were applied to categorize the data. The researchers met weekly to compare codes and to resolve discrepancies. The coding guides were iteratively revised, each transcript was re-coded using the final versions, and the codes were combined into themes. Thematic saturation, which occurs when no new concepts emerge,14,15 was achieved after interviews with 15 physicians and 8 nurses. ATLAS.ti (version 8) was used for data management.
Results
Of the 15 physicians who agreed to participate, 11 (73.3%) were pediatric EM attending physicians, 2 (13.3%) were pediatric EM fellows, and 2 (13.3%) were general EM attending physicians. Fourteen of the physicians (93.3%) completed their residency and/or fellowship at a different institution. Physicians’ median age was 39 years old (range 30–58 years), and their years of experience as an attending physician (including the fellows) ranged from 1 to 21 years. Four of the 8 nurses had worked in a general ED. Nurses’ median age was 39.5 years old (range 27–58), and their years of experience working in the pediatric ED ranged from 2 to 22 years. The average length of the interviews was 25 minutes.
Five themes emerged for factors that influence physicians’ decisions about whether to perform an LP: (1) the age of the infant, (2) the physician’s clinical experience, (3) the physician’s use of research findings, (4) the physician’s values, and (5) the role of the primary care pediatrician (Table 2).
Themes for Factors that Influence Physician’s Decisions About Whether to Perform an LP
Factors that Influence Physicians’ Decisions About Whether to Perform an LP
Age of the Infant
Nearly all physicians stated that they routinely obtain an LP on febrile infants ≤4 weeks old. A common reason cited for this age cutoff was the perception that there is consensus among physicians nationwide that performing an LP in this age group is always done (Table 2, 1a) and that the “rules” dictate this practice. For low-risk infants 4 to 8 weeks old, most physicians did not routinely perform an LP, although some did until infants were either 6 or 8 weeks old. Some found that the decision was more difficult in infants 4 to 6 weeks old because of the lack of consensus among physicians (Table 2, 1b).
Physicians’ Clinical Experience
Physicians’ years of clinical experience influenced their reported practice of performing an LP on low-risk infants 4 to 8 weeks old. Some younger physicians reported that they were more risk averse (Table 2, 2a). Although 1 physician with more experience still worried about missing meningitis, he said that over time he was willing to forgo the LP as long as the decision-making process involved the parents (Table 2, 2b). Attending physicians with >10 years of experience varied in how experience affected their stated practice. Some of these experienced physicians said that their practice had evolved recently to not routinely perform the LP. However, 1 physician with >20 years of experience stated that his practice of always obtaining the LP had not changed because he had cared for many infants with bacterial meningitis and therefore had seen its consequences (Table 2, 2c). One general EM physician said that the infrequency of managing febrile infants resulted in some discomfort about the decision of whether to perform an LP (Table 2, 2d). Some younger physicians, including a senior fellow, identified that the dominant practice patterns during their training influenced their current decisions about LP (Table 2, 2e).
Physicians’ Use of Research Findings
For febrile infants ≤4 weeks old, physicians’ practices of routinely obtaining an LP were informed by long-standing results of research in which both the higher risk of bacterial meningitis and the lack of reliability of clinical appearance had been documented as indicators of IBI in this age group. For infants 4 to 8 weeks old, many physicians had stopped routinely obtaining an LP because of newer management algorithms such as the Step-by-Step (or “stepwise”) approach that allows infants in this age group to be classified as low risk without routine use of LP (Table 2, 3a). However, some physicians felt that there were insufficient data regarding the risk of meningitis in this older age group, which made the decision about LP difficult. The 2 general EM physicians felt it was challenging to stay informed about the algorithms used for managing febrile infants (Table 2, 3b).
Physicians’ Values
Risk aversion was an important value for physicians in the decision about whether to perform an LP. For infants ≤4 weeks old, physicians felt the risk of meningitis was too high for them to not perform an LP. For physicians who routinely obtain an LP on infants 4 to 8 weeks old, risk aversion remained an important value (Table 2, 4a). Other physicians, however, valued the sense of being ethical in providing parents with the option of not performing an LP given the lack of consensus among physicians about infants in this age group (Table 2, quotation 4b).
Role of the Primary Care Pediatrician
For infants ≤4 weeks old, EM physicians reported that primary care pediatricians played an important role in setting expectations of parents, before the ED visit, about the need for an LP. In the ED, EM physicians reported that they sometimes collaborated with the primary care pediatrician to help parents feel comfortable with the decision to perform an LP. For infants 4 to 8 weeks old, EM physicians reported that, on occasion, their recommendation about the need for an LP differed from that of the primary care pediatrician, which sometimes led to a discussion about the need for LP (Table 2, 5a). In deciding not to perform an LP on these infants, EM physicians stated that the ability to arrange close follow-up with the primary care pediatrician was very important (Table 2, 5b).
Shared Decision-Making With Parents of Febrile Infants About the Decision to Perform an LP
Although physicians and nurses reported the frequent use of shared decision-making in the ED for various other clinical situations, they had mixed feelings about shared decision-making with parents of febrile infants and identified both barriers to and facilitators of shared decision-making as described below.
Barriers
Barriers included factors related to parents, providers, and time constraints (Table 3). Among factors related to parents, perceived understanding of information was identified as an important barrier. Factors identified as influencing parents’ understanding included language barriers and parents’ cognitive abilities (Table 3, 1a). Physicians and nurses also commonly identified parents’ emotions (such as stress and feeling overwhelmed) as barriers to effective communication and to shared decision-making. Providers felt that parents often feared LP, which inhibited their ability to clearly think through the risks of not performing the LP and could result in medicolegal risks for the physician if the parents decided against LP and the infant was later diagnosed with meningitis (Table 3, 1b). Disagreements in decision-making between family members were also identified as barriers (Table 3, 1c). Parents’ receipt of contradictory messages, from different health care providers, from other family members, or from the Internet, was cited as a barrier to shared decision-making given the multiple and often conflicting sources of information (Table 3, 1d).
Barriers and Facilitators to Shared Decision-Making With Parents of Febrile Infants
If physicians believed there was only 1 reasonable management pathway, shared decision-making was not considered to be an option. For example, physicians uniformly stated that LP was the only option for infants ≤4 weeks old (Table 3, 2a). Some physicians and nurses also felt a sense of paternalism in making the decision to perform an LP, given physicians’ level of knowledge about risks compared with that of parents (Table 3, 2b).
Time constraints that inhibit the ability of providers to effectively communicate and to engage parents in shared decision-making were also identified as barriers. Specific time barriers were related to the volume of patients in the ED that prohibited the physician from adequately communicating with the parents (Table 3, 3a). Nurses identified protocols that dictated the need for timely evaluation and prompt administration of antibiotics for febrile infants as a barrier to effective communication (Table 3, 3b).
Facilitators
Facilitators of shared decision-making similarly included factors related to both parents and providers as well as to the primary care pediatrician (Table 3). Although parents’ abilities to understand risks was cited as a barrier, it was also identified as a facilitator by both physicians and nurses if providers were able to effectively communicate risks in a manner that parents understood (Table 3, 4a). Similarly, parents’ acceptance of risk was felt to be a facilitator because parents would need to accept a small amount of risk whether an LP was performed or not (Table 3, 4b).
The physician’s sense of clinical equipoise in deciding whether to perform an LP for an infant was viewed as a facilitator. In situations in which the physician felt there were 2 reasonable options, shared decision-making was viewed as a viable process to use with parents (Table 3, 5a). Some physicians also felt that recent research that found that LP is not always necessary in infants 4 to 8 weeks old enabled them to incorporate shared decision-making into the decision about whether to perform an LP (Table 3, 5b).
Providers also felt that shared decision-making was facilitated if the pediatrician set expectations with parents that matched those of the EM physician (Table 3, 6a) as opposed to contradictory messages, which were a barrier. Additionally, the availability of follow-up with the primary care pediatrician was an important facilitator because it allowed EM physicians to feel comfortable with not performing an LP if the parents preferred that option (Table 3, 6b).
Discussion
Multiple factors influence pediatric and general EM physicians’ decisions about whether to perform an LP on a low-risk febrile infant ≤8 weeks old. Although physicians uniformly stated that they routinely obtain an LP for infants’ ≤4 weeks old, the decision to perform an LP on infants 4 to 8 weeks old varied on the basis of differences in the physician’s values, use of research findings, and clinical experience. Although this variation indicates that use of shared decision-making with parents may be warranted for infants in this older age group, both physicians and nurses had mixed feelings about its use.
We identified several factors that influence decisions of individual physicians as to whether to perform an LP on infants 4 to 8 weeks old. Publication of new algorithms for risk stratification led some physicians to change their practice and not perform an LP in infants who are classified as low risk by the newer algorithms. However, other physicians have argued that LPs should be performed even if the risk of meningitis is extremely low because of its potentially devastating consequences.16 In weighing this decision, the value of risk aversion is likely an important factor for physicians. Newer attending physicians sometimes reported feeling more risk averse because of their lack of experience, but this risk aversion dissipated over time for some more-experienced physicians. However, similar to reports in which researchers assessed physicians’ risk aversion in adults and children with other conditions,17,18 1 physician with many years of experience felt risk averse because he had often seen the consequences of meningitis. In our findings, risk aversion is highlighted as an important value for decision-making that differs among individual physicians. Physicians uniformly felt that the risk of meningitis in infants ≤4 weeks old was too high to forgo LP. Risk aversion in this age group may be linked to the sense of consensus that infants ≤4 weeks old are high risk, although the actual risk of meningitis is ∼1%.5 As newer risk stratification algorithms without age cutoffs become adopted into practice,19 it is possible that physicians become less risk averse in this younger age group.
The factors we identified likely contribute to the extensive variation among providers and across EDs in whether an LP is performed on low-risk febrile infants 4 to 8 weeks old.1,20 As rates of meningitis are similar across institutions,1 this variation may be considered unwarranted.21,22 Variation in care is also unwarranted when it is not explained by differences in preferences of parents or patients.21,22 Incorporation of parents’ preferences into decisions is best made through a shared decision-making process, in which the parents are informed about both the risks and the benefits of management options and are able, with the support of the physician, to arrive at a decision that fits with their values.12 Similar to physicians, parents of febrile infants likely have differences in their values and preferences that can be explored through shared decision-making, and that in turn can reduce the current “unwarranted” variation in whether an LP is performed.
Use of shared decision-making in adults has been shown to reduce unwarranted variability.23 Additionally, decisions regarding the management of well-appearing febrile infants have been identified as well suited for shared decision-making.24 However, shared decision-making with parents of febrile infants has not been previously studied, and physicians and nurses identified several barriers. Barriers to parents’ ability to understand medical data and risks were commonly cited, as was the impact of parents’ emotions on their understanding. The decision to obtain an LP is likely to elicit a strong emotional response in parents.25 These emotion-laden decisions have been labeled “affect rich” because parents’ emotional responses can inhibit their attention to objective information on risks and, ultimately, negatively impact the decision-making process.26,27 However, despite these challenges, it is suggested in research that parents do want to participate in affect-rich decisions, for example, in the decision of whether to resuscitate their extremely premature or high-risk newborn.28 Communicating risks in a manner that parents can understand was identified as a facilitator of shared decision-making. For example, pictographs improve parents’ understanding of risks by giving them a visual representation of the denominator.29 Pictographs have been incorporated into visual aids to facilitate communication and shared decision-making in the ED, such as with parents of children with head trauma.30 However, time constraints were identified as barriers to shared decision-making, and use of visual aids may increase the time providers need to spend with parents.23 In future investigations, researchers should evaluate how to effectively implement shared decision-making for febrile infants in the time-limited ED setting, including the important role of the primary care pediatrician both before the ED visit and for follow-up.
There are several limitations to our study. First, because the study was conducted at a single academic medical center, the perspectives of the physicians and nurses may not be widely generalizable. However, we interviewed physicians and nurses who had worked at different institutions, thereby increasing the generalizability of our findings. Second, we interviewed only 2 general EM physicians and enrolled nurses and general EM physicians who responded to recruitment e-mails, which may have resulted in selection bias. Third, although we collected data from interviews of physicians and nurses, we did not observe their actual clinical practice, and the narratives may not match physicians’ actual practices. Fourth, although physicians and nurses discussed their perceptions of factors related to parents that are barriers to and facilitators of shared decision-making, we did not interview parents. Learning parents’ values and preferences in decisions regarding LPs will be critical for implementation of shared decision-making, and in future investigation, researchers should evaluate the actual perspectives of parents on shared decision-making for low-risk febrile infants.
Conclusions
Differences in physicians’ values, use of research, and clinical experience likely contribute to the observed variation in decisions about performing an LP on febrile infants ≤8 weeks old. To reduce this unwarranted variation, incorporation of parents’ values and preferences through shared decision-making may be indicated, although there are several barriers that would need to be overcome. In future studies, researchers should explore parents’ perspectives on shared decision-making for low-risk febrile infants and learn how best to implement shared decision-making for these infants.
Footnotes
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Supported by grant K08HS026006 (Dr Aronson) from the Agency for Healthcare Research and Quality, Clinical and Translational Science Awards grant KL2 TR001862 (Drs Aronson and Shapiro) and grant UL1TR0001863 (Dr Shapiro) from the National Center for Advancing Translational Science (a component of the National Institutes of Health [NIH]), and by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (part of the NIH) under award number AR060231-06 (Dr Fraenkel). The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality or the NIH. Funded by the National Institutes of Health (NIH).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
References
- Copyright © 2019 by the American Academy of Pediatrics