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Table 7 Response option rewording after cognitive interviews Question Original Response Options Revised Response Options How would you describe the infant’s general state? How would you describe the infant’s general status?* Table 6 Each shows instrument that, on average, development registered phase nurses, could nurse not alone practitioners, lead to aneonatologists, successful product, and developmental but no phaseand wasfeeding dispensa- specialists ble, and, scored taken alertness, together, tone, they eyes, have eyebrows, generated and feeding a set of cues mid-range items ready (4-6) for on quantitative the scale. Desaturation, assessment. tachypnea Our develop- over baseline, ment time process to recover is limited from tachypnea, by the fact retractions that it is received performed high scores only in (8 academic or 9). Nurses medical and specialists centers, although were more it likely is reason- than were physicians to rate aspects of tone and feeding as valuable able to assume that most non-academic center neonatal discriminators of levels of CLD severity. intensive care units would share many features of the Respondents academic reported medical that center pre-assessment environment. data Our should focus include groups information were conducted on the clinical at environment only two neonatal (eg, parent intensive visits, room care noise), units administration both located and intiming a single of medications state, opening (eg, the timing possibi- of last steroid lity ofcourse, limitations dose of bycaffeine/aminophylline), region, or practice culture. procedures Our and tests more (eg, geographically laboratory tests, dispersed immunizations, cognitive radiology interviewing visit), and respiratory and field support testing (eg, should type and help magnitude us identify of support). any such problems. Workgroup Feedback: The workgroup participants assisted in narrowing multiple terms to a single, best term for 12 items. For example, eyebrow descriptors “furrowed,” “scrunched,” “contracted,” and “tense” were narrowed to “furrowed.” In addition, participants clarified, defined, or distinguished similar descriptions for eight items. For instance, participants helped Mainly calm or quiet Active or quiet sleep Restless Drowsy - eyes open and closed Agitated or irritable Awake Distressed Frantic n/a Mainly calm or quiet n/a Tired n/a Restless n/a Agitated or irritable n/a Distressed n/a Frantic How would you describe the infant’s tone? Soft flexion Soft or neutral flexion Some increased extensor tone, fingers splayed Arms extended Increased extensor tone with arching and/or shoulders elevated or retracted Arms extended with arching and/or shoulders elevated or retracted Limp (wiped out) How do the infant’s eyes appear? Asleep - can’t observe Asleep or closed - can’t observe How would you describe the infant’s endurance during care time? ("Endurance” revised to “stamina”) Engaged/alert/bright-eyed Crying Easily distracted Tired Panicked/wide-eyed Engaged or alert Easily distracted Panicked No fatigue (tolerates care time well Sufficient stamina - tolerated care time well Minimal fatigue (shows some signs of fatigue with care but recovers quickly) Moderate fatigue (frequent signs of fatigue with care but recovers with pause) Easily fatigued (’wiped out’ 3-5 minutes into normal care time) * new question broken out of “general state” question as a result of discussion, thus, original response not applicable (n/a) Tired some with care but recovered quickly Tired easily with care but recovered with pause Tired easily without recovery (’wiped out’ 3-5 minutes into normal care time) discriminate The PRPOS between is currently eyes closed undergoing due to stress, fielddescribed testing at by the fiveterm academic “eyes tightly medical closed,” centers, and where eye closure bedside that nurses does not are indicate applying distress, the assessment denoted by tool “closed to and a cohort sleepy” ofeyes. 150-200 In three cases, neonates workgroup (25-40 participants per institution) simplified between terms; 23for and example, 30-6 we weeks reduced gestational descriptions age at of musculoskeletal birth (excluding tone infants from with four to three chromosomal because of abnormalities) clinicians’ inability and between to discriminate 36-0 and accurately 36-6 between four different levels. weeks postmenstrual age. At the conclusion of field testing, we will perform psychometric analyses of the data Participants also highlighted areas of uncertainty, expressing concern to test item that some validity of our and feeding reliability, items for (mouth/tongue the purpose position; of rooting/feeding further scale refinement. cues) might be influenced by the feeder’s technique and level of experience or the infant’s development and Conclusions feeding skills, rather than by the infant’s level of CLD severity. We expect The that groups usealso of the noted PRPOS that it to is difficult assess observable, to decipher whether functional “raised” domains and will “furrowed” greatly eyebrows enhance the signal current distress unirelated to dimensional the infant’s CLD. assessment of BPD severity based on When we asked workgroup members to rescore after discussion, their responses did not change significantly from what they reported before discussion. Overall, most items scored as “moderately” or “pretty closely” reflecting severity of CLD in infants. 44 neonatal INTENSIVE CARE Vol. 25 No. 7 n November-December 2012
Table 8 Examples of question and response option wording changes to the PRPOS Original Revision Question: Does this infant’s care plan or orders require or allow an increase in oxygen support during care time? Response options: No, Yes Question: How would you describe the infant’s general state? Response options: Asleep, Drowsy - eyes open and closed, Awake Second oxygen Survey: use Results alone. from For the example, second the survey PRPOS of the might modified allow Delphi clinicians process suggested and researchers that we had toa test range therapies of behaviors forand BPD actions more that effectively would indicate by accurately different levels identifying of CLD severity subtle effects for each domain. on lungFor function. five of the In addition, domains (tone refinement and desaturations in the defini- during tion the first of BPD five minutes may allow of feeding, more respiratory accurate prediction rate with of feeding, important and calming outcomes and desaturations such as hospital during length care time), of stay we and did not have a descriptive behavior or action that would reflect the re-hospitalization after discharge, and further refine the absence of disease, or “no CLD.” Thus, we added a descriptor relationship between BPD and neurodevelopmental that reflected no CLD more clearly. For five domains (sleep, arousal/transition, outcome. general state during care time, color change, and feeding Use cues), of a structured we had descriptive approachbehaviors modelled or on actions the rigor- that showed ous PROMIS overlap methodology between moderate helpedand ussevere develop disease. and refine Most arespondents proxy-reported (81%) measurement reported that intercostal, instrument subcostal, over a short and substernal period ofretractions, time, whilehead maintaining bobbing, and precision, nasal flaring clarity, dis- were crimination, familiar and/or and useful comprehensiveness terms to describe balanced breathing. with A few par- respondents simony. (16%) Thisnoted approach other will degrees serve to as consider a useful between model for “barely others visible” interested and “pronounced,” in developing and proxy-reported a few others (9%) outcomes did not find the measures. term “head bob” familiar or useful. We chose eleven areas for further discussion, expansion, and clarification Additional using material focus groups. We eliminated four potential assessment domains (sleep, rooting/feeding cues, mouth/tongue position, Additional and tone fileduring 1: Box S1. first Focus five Group minutes Scenario. of feeding) This file presents because the scenario used in the focus group discussions. of difficulty in defining an appropriate scale (sleep) or low Additional file 2: Table S1. Survey 2 results for CLD severity scores on the CLD discrimination question. We also added two classification of behaviors and actions in each domain. This file areas–retractions shows a table and of thenasal domains flaring– and behaviors/actions for inclusion used on in the thetool, second but we survey, determined with an indication that we of did whether not need the behavior/action to explore these was classified further during as the being focus characteristic groups. of no, mild, moderate, or severe lung disease. Phase 3: Focus Groups: Eighteen beside nurses and specialists participated in the two focus groups, with nine participants List of Abbreviations in each BPD: group. bronchopulmonary All participants dysplasia; had CLD: at chronic least three lung disease; years ELGAN: of experience extremely in low the gestational neonatal age intensive newborn; care PRPOS: unit. proxy: The reported focus pulmonary group outcome discussions scale. helped us to confirm response options for our items and determine the scale endpoints from no disease Acknowledgements to severe We would CLD. like Focus to acknowledge groups also the contributions helped us of discover our expert which panel terms (Steven should H. not Abman, be MD, used University as response of Colorado; options Carl L. (eg, Bose, “mottled” MD, University of to describe North Carolina the infant’s at Chapel color, Hill; Robert and “floppy” G. Castile, MD, or “hypotonic” Ohio State University to describe and Nationwide the infant’s Children’s tone). Hospital; As we Richard note above, A. Ehrenkranz, we began MD, Yale by University School of Medicine; Gail C. McCain, PhD, University of Miami presenting the focus groups with eleven areas, arousal, general School of Nursing and Health Studies; Michael E. Msall, MD, University of state during Chicago Medical care time, Center; calming, Rita H. Pickler, eyes, PhD, eyebrows, RN, Virginiacolor, Commonwealth tone, desaturations during feeding, respiratory rate during feeding, desaturations, and tachypnea, and asked group members to discuss transition/arousal, calming, agitation and energy/activity level, eye appearance, color change, tone, desaturations, and respiratory rate. We also asked focus group members to think about descriptors of general state–mainly calm or quiet, restless, Split “yes” response option into “yes - required” and “yes - allowed” Changed “asleep” response option to “asleep (active sleep or quiet sleep)” Question: How would you describe the infant’s color? Added instruction to ignore jaundice. Question: How would you describe the infant’s breathing? Reworded question to “How would you describe the greatest degree of retractions you observe?” Question: How would you describe the infant’s tone? Response options: Soft flexion; some increased extensor tone, fingers splayed; increased extensor tone with arching and/or shoulders elevated and retracted Question: How do the infant’s eyes appear as you begin care? Response options: asleep- can’t observe, engaged/alert/bright-eyed, easily distracted, panicked/wide-eyed Revised response options to “soft or neutral flexion,” “arms extended,” “arms extended with arching and/or shoulders elevated or retracted,” lip (wiped out) Revised response options to “asleep or closed - can’t observe,” “crying,” “tired,” “engaged or alert,” “easily distracted,” and “panicked” University Medical Center; and Peter Rosenbaum, MD, McMaster University) and the physicians, nurse practitioners, registered nurses, developmental specialists, and feeding specialists from Duke University, Stanford University, University of Alabama-Birmingham, and University of Iowa who participated in our surveys, working groups, focus groups, and cognitive interviews. We also thank our focus group moderator, Diane Bloom, PhD, as well as Jeanne Snodgrass and Teresa Edwards for their assistance with cognitive interviewing. This work was funded by the National Center for Research Resources and the Eunice Kennedy Shriver National Institute of Child Health and Human as a UNC Clinical and Translational Science Award Administrative Supplement, award number 3UL1RR025747-02S3. Author details 1 Medicine Administration, School of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 2 Department of Pediatrics, School of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 3 North Carolina Translational and Clinical Sciences Institute, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 4 agitated or irritable, distressed, and frantic–and of the ability to calm-self-calms, calms with containment, voice soothing, irritable, not easily calmed, frantic/inconsolable. In the course of listening to focus group discussion, we chose to eliminate the questions about color and tone, and also to eliminate questions about eyebrows, but retain questions on eyes, and add questions about respiratory rate and desaturation during both care time and feeding. Phase 4: Cognitive Interviews: Six bedside nurses from three academic medical centers, UNC (n=3), Stanford University (n=2), and the University of Iowa (n=1) participated in one-hour cognitive interviews. Overall, the nurses reported that the questions were easy to Cecil G. answer. Sheps Center Interview for Healthrespondents Services Research found and Division that the of General tool’s instructions Medicine were and Clinical understandable Epidemiology, School for the of overall Medicine, assessment The University and of North the care time Carolina portion at Chapel of Hill, it, but Chapel they Hill, found NC, USA. the instructions less clear for the feeding portion of the assessment. At least one respondent Authors’ contributions suggested Research question: wording WAP, changes MML; Study to conceptualization the response and options design: of WAP, 12 of 20 MML, questions, STR, DAD, SEM; but Data half collection: or more WAP, of the SEM, respondents LMP; Data analysis suggested and changes interpretation: to the WAP, response SEM, STR, DAD; options Initialfor draftonly and revisions these four of manuscript: questions: (1) SEM, How WAP, would STR; Manuscript you describe revision: DAD, the infant’s MML, LMP. general All authors state?; read and (2) How approved the final manuscript. would you describe the infant’s tone?; (3) How do the infant’s eyes Competing appear interests as you begin care?; and (4) How would you describe the The authors infant’s declare endurance that theyduring have nocare competing time? interests. In Received: response 21 February to these 2011 cognitive Accepted: interview 26 July 2011 results, we changed Published: 26 July 2011 the response options in four cases about which at least half the respondents had suggestions. The old and new responses to the References questions 1. Schmidtare B, Asztalos presented EV, Roberts in Table RS, Robertson 7. To CMT, illustrate Suave RS, the Whitfield evolving MF, refinement Trial of Indomethacin of responses, Prophylaxis we initially in Preterms included (TIPP) Investigators: two additional Impact of response bronchopulmonary options to dysplasia, the general brain injury, state and question: severe retinopathy “sleeping” on and the outcome of extremely low-birth-weight infants at 18 months: results “tired.” After testing this twice, we realized that the question from the trial of indomethacin prophylaxis in preterms. JAMA 2003, should 289(9):1124-9. actually be divided into two questions– one on “general state” 2. Ehrenkranz and one RA, on Walsh “general MC, Vohrstatus.” BR, Jobe AH, Wright LL, Fanaroff AA, Wrage LA, Poole K, National Institutes of Child Health and Human Phase Development 5: Final item Neonatal revision: Research Network: We refined Validation the of directions the National for using Institutes of Health consensus definition of bronchopulmonary the scale, particularly for the feeding assessment section. We dysplasia. Pediatrics 2005, 116(6):1353-60. defined 3. Ambalavanan “desaturation” N, Van Meurs as KP, an Perritt oxygen R, Carlo saturation WA, Ehrenkranz of less RA, than 80%, and Stevenson we defined DK, Lemons “increased JA, Poole respiratory WK, Higgins RD, rate” NICHD as Neonatal a respiratory Research rate above 60 or, if the infant’s baseline respiratory rate was already above 60, an “increase” is defined as a respiratory rate above the baseline. We provided instructions for how to calculate the baseline respiratory rate–count for 30 seconds, then multiply by 2–and we revised other question wording and response options, examples of which can be seen in Table 8. neonatal INTENSIVE CARE Vol. 25 No. 7 n November-December 2012 45
Page 1 and 2: neonatal Vol. 25 No. 7 November-Dec
Page 3 and 4: adpage page 3 Advancing neonatal no
Page 5 and 6: Efficiency through innovation By fo
Page 7 and 8: Tiny patient. Tiny connector. Big-T
Page 9 and 10: Intermediate and Advanced courses s
Page 11 and 12: isk of obesity before females enter
Page 13 and 14: and because nearly 90% of those exp
Page 15 and 16: Combined with a redesigned trigger
Page 17 and 18: developmental, neurological, cognit
Page 19 and 20: preterm infants. Lipids. Apr 2003;3
Page 21 and 22: appointed “mall.” We drank the
Page 23 and 24: Table 1: Number of patients affecte
Page 25 and 26: The percentage of errors diminished
Page 27 and 28: Criteria 1: Pull vs. push trigger a
Page 29 and 30: Nasal and septal irritation, breakd
Page 31 and 32: Conclusion • Maximizing the size
Page 33 and 34: parenchyma. 5 Despite the extensive
Page 35 and 36: Figure 7 Changes over time in funct
Page 37 and 38: the use of mechanical ventilation.
Page 39 and 40: Development of a Proxy-reported Pul
Page 41 and 42: Table 3 Domains and behaviors used
Page 43: severity for each domain (see Addit
Page 47 and 48: irth: the population-based Nord-Pas
Page 49 and 50: ia, ing, efiical full stabyregd 5 n
Page 51 and 52: Discussion Early discharge is makin
Page 53 and 54: HISTORY Incubators Susan Goldstein
Page 55 and 56: Use the safer practice to prepare h

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