Appraisal Synopsis

ARTICLE Children With Special Health Care Needs: Child Health and Functioning Outcomes and Health Care Service

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Use Carmen Caicedo, PhD, RN ABSTRACT This study describes health, functioning, and health care service use by medically complex technology-dependent children according to condition severity (moderately disabled, severely disabled, and vegetative state). Data were collected monthly for 5 months using the Pediatric Quality of Life Generic Core Module 4.0 Parent-Proxy Report. Health care service use measured the number of routine and acute care office visits (including primary and specialty physicians), emergency department visits, hospitalizations, nursing health care services, special therapies, medications, medical technology devices (MTDs), and assistive devices. Child physical health was different across the condition severity groups. The average age of the children was 10.1 years (SD, 6.2); the average number Carmen Caicedo, Assistant Professor of Nursing, Nicole Wertheim College of Nursing and Health Sciences, Florida International University, Miami, FL. Funded by Florida Nurses Foundation 2012 Undine Sams and Friends, Research Grant (District 5 Charitable Trust) for dissertation study. Conflicts of interest: None to report. Correspondence: Carmen Caicedo, PhD, RN, Nicole Wertheim College of Nursing and Health Sciences, Florida International University, AHC 3, Room 326, 11200 SW 8th St, Miami, FL 33199; e-mail: ccaicedo@fiu.edu. 0891-5245/$36.00 Copyright Q 2016 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved. Published online January 28, 2016. http://dx.doi.org/10.1016/j.pedhc.2015.12.003 590 Volume 30 Number 6 of medications used was 5.5 (SD, 3.7); the average number of MTDs used was 4.2 (SD, 2.9); and the average number of assistive devices used was 4.3 (SD, 2.7). Severely disabled and vegetative children were similar in age (older) and had a similar number of medications, MTDs, and assistive devices (greater) than moderately disabled children. The advanced practice nurse care coordinator role is necessary for the health and functioning of medically complex, technology-dependent children. J Pediatr Health Care. (2016) 30, 590-598. KEY WORDS Children with special health care needs, medically complex, medical technology–dependent, health-related quality of life, pediatric nurse practitioner Approximately 11.2 million children in the United States (15.1%) have special health care needs (Centers for Disease Control and Prevention, 2014). A small but growing subset of children with special health care needs (CSHCN) are dependent on medical technology or procedures to sustain life (Simon et al., 2010). They require a higher level of care and care coordination both in the hospital and in community settings (Houtrow, Okumura, Hilton, & Rehm, 2011; Kuo, Cohen, Agrawal, Berry, & Casey, 2011). Advanced practice nurses (APNs; e.g., pediatric nurse practitioners [PNPs] and clinical nurse specialists) are in a unique position to provide high-quality care across care settings (Aruda, Griffin, Schartz, & Geist, 2015; Martyn, Martin, Gutknecht, & Faleer, 2013), comprehensive care coordination (Looman et al., 2013), and advocacy for CSHCN and their families because of their specialized Journal of Pediatric Health Care training and knowledge of health and regulatory issues (Lindeke, Krajicek, & Patterson, 2001). Current literature examines the types of medical complexities in CSHCN by describing the types of health consequences, such as the need for prescription medications (Simon, Mahant, & Cohen, 2012); functional difficulties (Lollar, Hartzell, & Evans, 2012); use of medical technology for children cared for at home (Mendes, 2013); and the need and use for multiple health care services (Kuo et al., 2011). Although the magnitude of health care costs for these children is great (Cohen et al., 2012), limited information on child health and functioning and health care service use for medically complex, technology-dependent children is available in the literature (Rehm, 2013). No national data are available on the type of complex health care or medical technology used by this group of CSHCN (Carnevale, Rehm, Kirk, & McKeever, 2008; Spratling, 2015). Existing evidence suggests that children who require complex medical health care and are dependent on medical technology have poorer health-related quality of life (HRQOL) compared with chronically ill children who are not dependent on technology (Houtrow et al., 2011; Kuo et al., 2011). PNPs are positioned across care settings to establish partnerships with CSHCN and their families to optimize health care outcomes (Borgmeyer, Gyr, Jamerson, & Henry, 2008; Brennan & McEnhill, 2011; Egerton, 2012; Ellington, 2013; Evangelista et al., 2011; Golden, 2014; Hendricks-Ferguson, Akard, Madden, Peters-Herron, & Levy, 2015; Okuhara, Faire, & Pike, 2011) and improve care coordination for this growing vulnerable population (Lindeke, Leonard, Presler, & Garwick, 2002). This study attempts to fill the knowledge gap by examining demographic information, condition severity, and the types of care and services needed as reported by the parent/guardian caregivers of medically complex, technology-dependent children. This information will help PNPs in all areas of service delivery and care coordination to improve the health and functioning outcomes of this population. The purpose of this study was to describe child health, functioning, and health care service use of medically complex technology-dependent children and to describe the differences by condition severity (moderately disabled, severely disabled, and vegetative state). number of routine and acute care office visits (for both primary and specialty physicians), emergency department visits, hospitalizations, nursing health care service visits, physical and occupational therapy sessions, and speech pathology sessions; (c) the number of medications, medical technology devices (MTDs), and assistive devices used by medically complex, medical technology–dependent CSHCN; and (d) condition severity (moderate disability, severe disability, and vegetative state). Data were collected monthly for 5 months. METHODS Study Design and Sample This longitudinal descriptive study used a convenience sample of medically complex, technology-dependent children. Recruitment and data collection took place from March 2011 to March 2013. Data collected included (a) child health and functioning (child HRQOL), which includes physical health and psychosocial health (both mental [emotional] health and functioning [social, school participation]); (b) health care service use, including the Demographic The child’s date of birth, gender, race/ethnicity, and diagnosed health conditions were collected using the Pediatric Quality of Life (PedsQL) Family Information Form (Varni, Seid, & Kurtin, 2001). www.jpedhc.org CSHCN inclusion/exclusion criteria CSHCN ages 2 to 21 years who had a complex medical condition with dependence on MTDs or procedures to maintain life were included in the study. CSHCN with only a behavioral or mental health disorder, such as attention deficit/hyperactivity disorder or autism without other medical conditions requiring complex medical health care, were excluded from the study. Parent inclusion/exclusion criteria Primary caregivers or parents aged 18 years or older who spoke English or Spanish and were responsible for the care of an eligible CSHCN were included in the study. Parents or guardians with any major physical or mental disability that prevented them from participating in the study or completing the instruments were excluded. Procedures After receiving Institutional Review Board approval from the university and permission from the key administrators, families were recruited from local pediatric primary and specialty physician practices, medical day care settings, and long-term/residential care settings in South Florida. Clinical site contacts spoke with families who met the inclusion criteria. Interested families were contacted by telephone by the principle investigator (PI). A home visit or recruitment site visit was scheduled for interested families; at this visit the study purpose was reviewed, questions were answered, and written signed consent and baseline data were obtained from the child’s parent or guardian. Data were collected monthly for five consecutive months (in person or by telephone) from the same parent. Instruments Child physical health and functioning Child health and functioning were measured using the PedsQL Generic Core Module 4.0 Parent-Proxy Report (Varni, Burwinkle, Seid, & Skarr, 2003). Each parent or November/December 2016 591 guardian caregiver (called parents) completed a parentproxy report that assessed the parent’s perception of their child’s health and functioning. The 23-item PedsQL Generic Core Module was designed to measure child physical health (eight items), mental health, including emotional functioning (five items) and social participation (five items), and school participation (five items). The instructions asked how much of a problem each item had been during the previous month using a 5-point response scale (0 = never a problem to 4 = almost always a problem). Items were reverse-scored and transformed to a 0-100 scale (0 = 100 to 4 = 0). The total Generic Core Module or HRQOL Score was computed as the sum of all 23 items (physical health, emotional functioning, social, and school functioning scales) over the number of items answered. Physical health was computed as the sum of the eight items in the physical health scale over the number of items answered. Psychosocial health was computed as the sum of the items in the emotional, social, and school functioning scales over the number of items answered. Higher scores indicated better HRQOL and functioning. The internal consistency reliability for this study was Cronbach’s a, 0.88 to 0.97, which is consistent with the literature and demonstrated good internal consistency (parent report = 0.90) with construct validity in the healthy children group and children with acute or chronic health conditions group (Varni & Limbers, 2009; Varni, Limbers, & Burwinkle, 2007). Because condition severity of CSHCN varied widely, this study measured the level of condition severity with the use of three categories (moderate disability, severe disability, and vegetative state) from the Glasgow Outcome Scale as determined by the PI. Moderate disability was indicated for children who were independent for their age but physically or cognitively disabled, thus requiring a modified physical, social, psychological, or vocational milieu. Severe disability was indicated for children with total dependence on others for managing a normal or modified environment. Vegetative state was indicated for children who were totally dependent with no perception of their environment (Pettigrew, Wilson, & Teasdale, 2003). Medications, medical technology, and assistive device use by the child were described by the parent by type and use each month. Health care service use included the parent’s monthly report of the number of routine and acute doctor office visits (including primary and specialty physicians), emergency department visits, and hospitalizations, along with the number of hours per week of nursing health care services, physical therapy (PT), occupational therapy (OT), and speech pathology (SP) therapy. Data Analysis Descriptive statistics were used to examine parentreported child characteristics including age, gender, 592 Volume 30 Number 6 race (White only, Black only, and other), and ethnicity (Hispanic or non-Hispanic); general health status reported by the parent (excellent, good, fair, or poor); condition severity reported by the PI (moderate disability, severe disability, or vegetative state); and functional limitations (independent for age, needs help, or dependent). Continuous variables are reported as means and standard deviations (SDs), and categorical variables are reported as frequencies and percentages over the 5 months. All the assumptions, such as mutually exclusive groups, homogeneity of variance, normal distribution, and homogeneity of regression needed for the valid use of analysis of variance (ANOVA) were verified. Differences among the condition severity groups were identified for the dependent variables using v2 or ANOVA as appropriate. Post-hoc comparisons were conducted using Bonferroni tests. RESULTS Sample A total of 84 medically complex technology-dependent children were recruited. Data were collected on a total sample of 76 children over 5 months. The recruitment rate was 69% of the parents from the clinical site contacts, with 26 parents refusing to participate or not responding to the initial telephone call from the PI. Eight CSHCN were lost to follow-up after the first interview: four were unable to be contacted, one moved out of the area, one parent refused to continue, and one child and one parent died. Characteristics of the CSHCN are presented in Table 1. Most of the children were younger than 11 years, male, and Hispanic. Most were severely disabled, yet in good to excellent general health as described by their parent. Most CSHCN experienced neurologic issues (e.g., seizures, cerebral palsy, and genetic disorders), breathing or respiratory problems (e.g., chronic lung disease and asthma and dependent on oxygen or a ventilator), and/or feeding/swallowing problems. Fewer than half of the children (42%, n = 35) were diagnosed with their first condition before 2 months of age, with diagnosis occurring at an average of 9.9 months (SD, 28.6; range, birth to 5½ years). The average age of the children was different across condition severity groups [F (2, 81) = 10.7, p = .05]. Post-hoc comparisons using the Bonferroni method indicated that the average age for the moderate disability group was significantly different (younger) than for both the severely disabled and vegetative group. However, the average ages of the children in the severely disabled and vegetative groups were not significantly different. No differences in gender or race/ethnicity were found across condition severity groups. Journal of Pediatric Health Care TABLE 1. Characteristics of the children by condition severity Parent report Age, years 2-5 6-11 12-17 18-21 Gender Male Female Race/ethnicity Hispanic White non-Hispanic Black non-Hispanic General health status Excellent Very good Good Fair Poor Total N = 84 Moderate disability n = 24 a 10.1 (6.2) 29 (35) 20 (24) 19 (22) 16 (19) 6.0 (4.1) 16 (67) 6 (25) 1 (4) 1 (4) a Severe disability n = 44 11.0 (6.1) 10 (23) 13 (30) 12 (27) 9 (20) a Vegetative state n = 16 a 13.8 (6.1) 3 (18) 1 (6) 6 (38) 6 (38) Test statistic F = 10.7* v2 = 60.5* v2 = 0.35 47 (56) 37 (44) 13 (54) 11 (46) 24 (54) 20 (46) 10 (63) 6 (37) 37 (47) 19 (25) 22 (27) 10 (42) 3 (13) 11 (45) 20 (45) 10 (23) 9 (21) 7 (44) 6 (37) 2 (13) 11 (13) 17 (20) 28 (33) 19 (23) 9 (11) 5 (21) 4 (17) 10 (42) 4 (17) 1 (4) 3 (7) 10 (23) 13 (28) 12 (28) 6 (14) 3 (19) 3 (19) 5 (31) 3 (19) 2 (13) v2 = 7.8 v2 = 6.1 Note. Values are listed as n (%) except where indicated. a M (SD). *p < .05. Parent-Reported General Health Status Overall, parents perceived general health status as good to excellent for 66% of the children. Parents rated the children’s health as good to excellent for 79% (n = 19) in the moderately disabled group, 59% (n = 26) in the severely disabled group, and 69% (n = 11) in the vegetative group. Overall, the poorest general health status was reported for 33% of the children (n = 28): 21% (n = 5) in the moderately disabled group, 41% (n = 18) in the severely disabled group, and 31% (n = 5) in the vegetative group. No significant difference in overall general health status was found across condition severity groups. Child Health and Functioning The parent-proxy report described children as having problems in the following areas: walking, 78% (n = 65); hurts and pains, 74% (n = 62); running, 72% (n = 61); bathing, 71% (n = 60); low energy level, 67% (n = 56); participating in sports or playing, 64% (n = 54); and doing chores or picking up toys, 64% (n = 54). Emotional functioning reported by parent-proxy showed that children had problems in the following areas: being angry, 86% (n = 72); being sad or blue, 62% (n = 52); being afraid or scared, 60% (n = 50); having trouble sleeping, 53% (n = 45); and worrying, 38% (n = 32). Children also were reported as having problems in the following areas: doing the same things as their peers, 65% (n = 55); keeping up with others, 63% (n = 53); making friends, 34% (n = 29); getting along with others, 32% (n = 27); and getting teased, 28% (n = 24). Parents further reported that children had www.jpedhc.org problems in the following areas: missing school when not feeling well, 76% (n = 64); keeping up with schoolwork, 73% (n = 61); forgetting, 70% (n = 59); paying attention in class, 67% (n = 56); and missing school for doctor or hospital appointments, 55% (n = 46). Parent-proxy report on child health and functioning is presented in Table 2. Child HRQOL was different across condition severity groups [F (2, 73) = 7.5, p = .001]. Post-hoc comparisons using the Bonferroni method indicated that the HRQOL score for the vegetative group was significantly different (lower) than that for both the severely disabled and moderately disabled groups. However, the HRQOL scores of the severely disabled group and the moderately disabled group were about the same. The Physical Health Score was different across condition severity groups [F (2, 59.0) = 21.7, p = .001]. Post-hoc comparisons using the Tamhane test indicated that the Physical Health Score for the vegetative group was significantly different (lower) than that for both the severely disabled and moderately disabled groups. There was no difference in the Psychosocial Health Score across condition severity groups. Functional Limitations The majority of children needed help or were dependent on help for activities of daily living (ADLs) because of physical or cognitive problems. Fifty-seven percent of children (n = 48) needed help with mobility (v2 = 5.0, p < .01); 43% (n = 36) ambulated without help; 39% (n = 33) were bed bound and unable to balance sitting up; and 18% (n = 15) were independent November/December 2016 593 TABLE 2. Parent-proxy report on child health and functioning by severity Total N = 84 Parent proxy HRQOL score Physical health summary score Psychosocial health summary score Moderate disability n = 24 Severe disability n = 44 Vegetative state n = 16 63.1 (29.1) 68.5 (23.5) 69.9 (24.9) 49.7 (26.3) 46.3 (27.8) 74.2 (20.8) 28.6 (17.5) 22.8 (9.0) 64.7 (27.3) 49.5 (27.9) 48.1 (28.5) 71.3 (23.2) Test statistic F = 7.5** F = 21.7* F = 0.93 Note. HRQOL, health-related quality of life. Values are listed as M (SD). *p < .05. **p < .01. with some assistive device, including a wheelchair or a walker. Other functional limitations were as follows: 89% of children (n = 75) needed help with feeding (v2 = 58.4, p < .001) with modified diets such as pureed or thickened liquids, or they were unable to feed themselves as a result of physical and/or cognitive problems and had swallowing or chewing difficulties requiring gastrostomy tube feedings; 92% (n = 77) needed help bathing (v2 = 25.3, p < .001); 64% (n = 50) needed help with grooming (v2 = 27.6, p < .001) and 87% (n = 73) needed help with dressing (v2 = 32.6, p < .001); and 85% (n = 71) needed help with toileting, including use of diapers for incontinence, catheterizations, or assistance cleaning up or dressing before and after toilet use (v2 = 31.5, p < .001). Significant differences in functional limitations were found across condition severity groups. Children in the vegetative group required total assistance with ADLs, whereas more children in the moderately disabled group were independent with ADLs than were children in the severely disabled group. Medications Ninety-two percent of children (n = 77) received multiple prescribed daily medications (Table 3), with an average of 5.5 (SD, 3.7). Forty percent of children (n = 31) received up to four different medications; 34% (n = 26) received five to six medications; and 26% (n = 20) received seven or more medications. The number of different medications received by the children was different across condition severity groups [F (2, 76) = 3.9, p = .025]. Post-hoc comparisons indicated that the average number of medications received by the moderate disabled group was significantly different (less) than that received by both the severely disabled and vegetative groups. However, the average number of medications received by the severely disabled and vegetative groups was not significantly different. Medical Technology Devices MTDs (Table 4) were used to sustain and/or monitor bodily functions daily for 74% of children (n = 62), with an average of 4.2 MTDs (SD, 2.9) and a range of 1 to 11 devices. The number of MTDs used by children daily was different across condition severity groups [F (2, 59) = 10.3, p = .001]. Post-hoc comparisons indicated that the number of MTDs used by the moderately disabled group was significantly different (lower) than that used by both the severely disabled and vegetative groups. However, the number of MTDs used by the severely disabled and vegetative groups was not TABLE 3. Daily medications by condition severity Parent report Children receiving medications No. of daily medications Types of medications Respiratory Gastrointestinal Cardiac Seizure Sedation, pain, spasms Allergy Renal Skin Immunosuppressive Total N = 84 Moderate disability n = 24 Severe disability n = 44 Vegetative state n = 16 77 (92) 5.5 (3.7)a 20 (83) 3.6 (2.2)a 41 (93) 6.0 (4.1)a 10 (63) 6.5 (3.6)a 49 (64) 43 (56) 11 (14) 30 (39) 29 (38) 21 (28) 8 (10) 19 (25) 6 (8) 13 (54) 5 (21) 4 (17) 6 (25) 2 (8) 7 (29) 2 (8) 1 (4) 1 (4) 27 (61) 29 (66) 5 (11) 15 (38) 18 (45) 12 (30) 6 (14) 15 (34) 4 (9) 9 (56) 9 (56) 2 (17) 9 (56) 9 (56) 2 (13) 0 3 (19) 1 (6) Test statistic v2 = 6.3* F = 3.9* v2 = 1.9 v2 = 18.3** v2 = 0.27 v2 = 8.5* v2 = 16.7** v2 = 0.86 v2 = 2.4 v2 = 8.9* v2 = 0.71 Note. Values are listed as n (%) except where indicated. a M (SD). *p < .05. **p < .01. 594 Volume 30 Number 6 Journal of Pediatric Health Care TABLE 4. Medical technology devices used daily by condition severity Parent report Children using an MTD daily No. of MTDs Types of MTD Tracheostomy Ventilator Oxygen Suction machine Pulse oximetry Apnea monitor Nebulizer Gastrostomy tube Total N = 84 Moderate disability n = 24 Severe disability n = 44 Vegetative state n = 16 62 (74) 4.2 (2.9)a 16 (67) 1.8 (1.0)a 30 (68) 4.9 (3.0)a 16 (100) 5.4 (2.7)a v2 = 8.3* F = 10.3** 15 (24) 7 (11) 12 (19) 27 (44) 19 (31) 6 (10) 43 (69) 40 (64) 2 (13) 1 (6) 1 (6) 3 (19) 3 (19) 0 13 (81) 4 (25) 9 (30) 2 (7) 6 (20) 16 (53) 10 (33) 3 (10) 23 (77) 24 (80) 4 (30) 4 (30) 5 (31) 8 (50) 6 (38) 3 (19) 7 (44) 12 (75) v2 = 3.6 v2 = 9.9** v2 = 8.5* v2 = 11.0* v2 = 16.3* v2 = 6.9* v2 = 0.09 v2 = 22.5* Test statistic Note. MTD, medical technology device. Values are listed as n (%) except where indicated. a M (SD). *p < .05. **p < .01. significantly different. The different types of MTDs were significantly different across condition severity groups and were related to assisting the children in breathing and eating. Assistive Devices Assistive devices (Table 5) were used to improve independence with functional activities by 73% of children (n = 61), with an average of 4.3 assistive devices (SD, 2.7; range, up to 7 devices). The number of assistive devices used by children daily was different across condition severity groups [F (2, 59) = 4.3, p = .001]. Post-hoc comparisons indicated that the average number of assistive devices used by the moderately disabled group was significantly different (lower) than that used by both the severely disabled and vegetative groups. However, the number of assistive devices used by the severely disabled and vegetative groups was not significantly different. Health Care Service Use Primary care pediatricians In the previous 12 months, all of the children had been seen by their primary care physician (PCP). Sixty-three percent of the children (n = 53) were seen for a routine TABLE 5. Assistive devices used daily by condition severity Parent report Children using assistive devices No. of assistive devices Type of assistive devices Wheelchair/mobility aids AFO Splints Vision Hearing Communication device Helmet Stander Bath chair Mechanical bed Lift Adaptive utensils Trunk brace Potty chair Total N = 84 Moderate disability n = 24 Severe disability n = 44 Vegetative state n = 16 61 (73) 4.3 (2.7)a 10 (42) 2.1 (1.9)a 35 (80) 4.5 (2.9)a 16 (100) 5.0 (2.4)a v2 = 24.5** F = 4.3** 40 (53) 34 (40) 26 (31) 12 (14) 5 (6) 15 (18) 3 (4) 14 (21) 30 (40) 29 (38) 16 (21) 3 (4) 4 (5) 3 (5) 2 (8) 3 (13) 3 (13) 3 (13) 0 1 (4) 0 1 (4) 0 1 (4) 0 0 0 0 26 (65) 23 (52) 15 (34) 7 (16) 4 (9) 13 (30) 3 (8) 10 (25) 19 (48) 19 (48) 10 (25) 3 (8) 4 (10) 3 (8) 12 (75) 8 (50) 8 (50) 2 (13) 1 (6) 1 (6) 0 3 (25) 11 (92) 9 (75) 6 (50) 0 0 0 v2 = 32.1** v2 = 15.1** v2 = 10.8** v2 = 0.29 v2 = 2.5 v2 = 10.0* v2 = 2.8 v2 = 4.4 v2 = 30.4** v2 = 20.1** v2 = 12.8** v2 = 2.8 v2 = 3.8 v2 = 2.8 Test statistic Note. AFO, ankle-foot orthotic. Values are listed as n (%) except where indicated. a M (SD). *p < .05. **p < .01. www.jpedhc.org November/December 2016 595 well-child care visit; 30% (n = 25) were seen once; 24% (n = 20) were seen twice; and 9% (n = 8) were seen up to four times. Fifty-three percent of the children (n = 48) were seen by their PCP for an acute care visit; 37% (n = 31) were seen once, 17% (n = 14) were seen twice, and 4% (n = 3) were seen three times for an acute care visit. No differences in routine and acute care PCP office visits were found during the study period across condition severity groups (Table 6). Specialty physicians Eighty-two percent of the children (n = 69) visited specialty physicians, with an average of 8.2 visits (SD, 4.6) during the study period. Moderately disabled children had an average of 6.2 visits (SD, 4.6); severely disabled children had an average of 8.9 visits (SD, 4.5); and vegetative children had an average of 9.3 visits (SD, 4.2). Thirty-eight percent of children (n = 32) were seen by at least five specialists; 32% (n = 22) were seen by between 6 to 10 specialists; and 30% (n = 21) were seen by up to 11 specialists during the study period. Types of specialty physicians used by more than 50% of the children included neurology, gastrointestinal/genitourinary, pulmonary, orthopedic, dentist, and ophthalmology. No overall differences in the number or type of specialty physicians seen during the study period were found across condition severity groups. Emergency department visits Thirty-seven percent of children (n = 31) were seen in an emergency department; 18% (n = 15) were seen once, 12% (n = 10) were seen twice, and 7% (n = 6) were seen four times. Forty-six percent of the children (n = 39) were hospitalized; 32% (n = 27) were admitted once, 10% (n = 8) were admitted twice, and 4% (n = 4) were admitted three or more times. No differences in the number of emergency department visits were found across condition severity groups. Nursing health care services Nursing health care services were provided for 65% of the children (n = 55), with an average of 73.1 hours per week (SD, 74.7; range, 0 to 168 hours). Thirteen percent of children (n = 11) received up to 40 hours of nursing health care per week; 17% (n = 14) received 41 to 120 hours; and 36% (n = 30) received 121 hours or more hours per week. Differences were found in the number of nursing health care hours per week across condition severity groups [F (2, 42.4) = 10.5, p = .001]. Post-hoc comparisons using the Tamhane test indicated that the number of nursing health care hours per week for the moderate disability group was significantly different (lower) than that of both the severely disabled and vegetative groups. However, the number of nursing health care hours per week for the severely disabled and vegetative groups were not significantly different. PT services PT services were provided for 55% of the children (n = 46) with an average of 2.1 hours per week (SD, 5.2; range, 0 to 5 hours). No differences in the number of PT hours per week were found across condition severity groups. OT services OT services were provided for 46 of the children (54.8%), with an average of 1.9 hours per week (SD, 5.0; range, 0 to 5 hours). No differences were found in the number of OT hours per week across condition severity groups. SP services SP services were provided for 41% of the children (n = 34), with an average of 1.7 hours per week (SD, 5.1; range, 1 to 3 hours per week). No differences were found in the number of SP hours per week across condition severity groups. TABLE 6. Health care services by condition severity Total N = 84 Per month Routine care visits Specialty visits Acute care visits Urgent care visits Emergency department Hospital admissions Hours per week Nursing health care Physical therapy Occupational therapy Speech pathology Moderate disability n = 24 Severe disability n = 44 Vegetative state n = 16 1.0 (0.08) 5.9 (4.8) 1.0 (0.40) 0.11 (0.62) 0.29 (0.61) 0.17 (0.36) 0.98 (0.10) 4.3 (4.2) 0.90 (0.29) 0.17 (0.82) 0.29 (0.62) 0.08 (0.24) 1.0 (0.07) 7.0 (4.9) 1.0 (0.51) 0.09 (0.60) 0.30 (0.66) 0.18 (0.39) 1.0 (0.0) 5.5 (4.8) 1.0 (0.0) 0.06 (0.25) 0.28 (0.48) 0.25 (0.41) F = 1.3 F = 2.6 F = 0.80 F = 0.16 F = 0.003 F = 1.1 73.1 (74.7) 2.1 (5.2) 1.9 (5.0) 1.7 (5.1) 25.4 (57.7) 2.9 (9.1) 3.1 (9.2) 2.8 (9.2) 81.5 (75.7) 1.9 (2.6) 1.5 (1.4) 1.4 (1.6) 121.5 (54.4) 1.5 (1.0) 1.3 (1.1) 0.62 (1.1) F = 10.5** F = 0.41 F = 0.97 F = 1.0 Test statistic Note. Values are listed as M (SD). **p < .01. 596 Volume 30 Number 6 Journal of Pediatric Health Care Ninety-five percent of the children received both PT and OT. However, 4% of parents reported that PT and OT needs were not met. SP was provided to 88% of the children, yet 6% of parents reported that SP needs were not met. Thirty-two percent of parents (n = 27) reported that their child had a need for treatment or counseling for an emotional, developmental, or behavioral problem. DISCUSSION This study describes child health, functioning, and health care service use of medically complex, technology-dependent children in South Florida over a 5-month period and describes differences by condition severity groups. Technology-dependent children are a growing subset of CSHCN. Many of these children have higher levels of condition severity, which may include an increased number of prescription medications, limited functional abilities with or without assistive devices, and an elevated health care service use reflecting the complex medical conditions and the intensive health care needs of the children. Increasing numbers of PNPs are providing care for CSHCN and improving their health and functioning outcomes (Borgmeyer et al., 2008; Egerton, 2012; Ellington, 2013; Evangelista et al., 2011; Hendricks-Ferguson et al., 2015). Parent-reported perceptions of the overall general health status were good to excellent with no differences across condition severity groups. This finding may be attributed to a well-managed medical health care routine coordinated by the contributions of the PNP because of their specialized training and knowledge of health and regulatory issues. IMPLICATIONS FOR POLICY, RESEARCH, AND PRACTICE PNPs are in a unique position to assist parent/guardian caregivers who are faced with the challenges of caring for their children because PNPs are able to provide comprehensive care coordination across care settings with multiple disciplines. In clinical practice, PNPs will increasingly encounter medically complex, technologydependent children with higher levels of condition severity, www.jpedhc.org PNPs are in a unique position to assist parent/ guardian caregivers who are faced with the challenges of caring for their children because PNPs are able to provide comprehensive care coordination across care settings with multiple disciplines. more prescription medication use, more functional limitations, and elevated health care service use. 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