Nonmedical Out-of-Pocket Expenses: A Hidden Cost of Hospitalization

Journal of Pediatric Nursing (2011) 26, 78–84

Nonmedical Out-of-Pocket Expenses: A Hidden Cost of Hospitalization Rachel DiFazio MS, RN, cPNP a,⁎, Judith Vessey PhD, DPNP, MBA, FAAN b a

Department of Orthopaedics, Children's Hospital Boston, Boston, MA Lelia Holden Carroll Professor in Nursing, Boston College, William F. Connell School of Nursing, Chestnut Hill, MA

b

Key words: Out-of-pocket expenses; Family-centered care; Children; Hospitalization

Health care reform has primarily focused on the costs incurred by the health care delivery system. Little attention has been placed on the magnitude of out-of-pocket (OOP) costs imposed on families as caregivers. Nonmedical OOP expenses (NOOPEs) are usually overlooked. The economic burden created by NOOPEs significantly inflates the total costs families must bear. Health care workers and policy makers must gain a better understanding of these realities. This article will discuss NOOPEs, provide a case study for illustration, and discuss strategies for nurses to assist families. © 2011 Elsevier Inc. All rights reserved.

IN TODAY'S CLIMATE of health care reform, increased attention is being paid to the availability, affordability, and adequacy of health care insurance needed to cover necessary condition-related health care expenditures such as physician fees, hospitalizations, and medications. Increased cost sharing and cost shifting to the consumer are being realized. Over the past decade, tremendous gains have been made in insuring children in the United States, with almost 90% of children now having private or public third-party health care coverage (Federal Agency Forum on Child and Family Statistics, n.d.). Yet, virtually none of these private or public health plans cover the entire array of health care costs. Families are frequently surprised to find their plans inadequate in the face of significant illness, injury, or disability. Insurance schemes often do not reimburse families for all medically related costs, which results in numerous medical out-of-pocket (OOP) expenses. These expenses often come as a great surprise to families. Moreover, there is a second group of OOP health care expenses that is rarely addressed but often has an additional significant impact on

⁎ Corresponding author: Rachel DiFazio, MS, RN, cPNP. E-mail addresses: [email protected] (R. DiFazio), [email protected] (J. Vessey). 0882-5963/$ – see front matter © 2011 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2010.01.010

family life. These are the nonmedical OOP expenses (NOOPEs) that families incur related to their child's health care. Combined these two categories, medical OOP expenses and NOOPEs, can lead to exorbitant health care costs for families. Medical OOP expenses are defined as the nonreimbursable expenses paid for by the patients or their families and are directly attributed to specific categories of health care delivery costs (Moore, 1999). These expenses can vary according to the insurance plan but often include deductibles and other forms of cost sharing such as copayments and coinsurance. In addition, certain items and services such as durable medical equipment, therapies, and prescriptions are frequently not covered by insurance and must be paid for out of the pocket by the patient's family. These costs all fall under the category of medical OOP expenses (Newacheck & Kim, 2005). The second category of OOP expenses is NOOPEs. They include costs that are directly attributed to the child's and family's health care needs. These expenses are necessary to sustain family life; they include such items as parent travel, food and lodging, dependent care, diminished wages from parental employment, and incidental expenses (Table 1). Such costs go far beyond the medical OOP expenses addressed in health insurance plans and remain unrecognized

Nonmedical Out-of-Pocket Expenses Table 1 Common Hospital-Related NOOPEs Incurred by the Family Category Travel

Lodging Food

Sibling care

Homemaking

Employment status

Incidental expenses

Description • Travel to the hospital for preadmission, admission, and follow-up care (e.g., gas/mileage, rail, taxi, public transportation, airplane, car rental) • Tolls • Parking fees • Passport and visa fees for families traveling internationally • Hotel, motel, or bed-and-breakfast facilities • Hospital-sponsored housing • Hospital cafeteria, takeout foods, and restaurant meals eaten out by parents and other family members during visitation or while rooming in • Babysitting • Unplanned but necessary enrollment in daycare or after-school programs • Gifts for volunteer caregivers • Entertainment and extra food costs for siblings and caregivers • Cost of additional family members who moved into the family's house to care for siblings • Cleaning service • Delivery charges and/or errand running expenses • Pet sitting or kennel fees • Unpaid leave of absence • Reduction in number of work hours • Voluntary separation or termination of employment • Telephone and Internet costs • Laundry and dry cleaning • Toiletries, over-the-counter medications for parents • Specific food requests, toys, and other distractions for a child with sickness • Clothing needed to be purchased because of unexpected admission

and unreimbursed by virtually all third-party payers. Consideration of these hidden costs as part of the total cost of a child's hospitalization significantly inflates a family's overall OOP expenditures (Hayman et al., 2001; Leonard, Brust, & Sapienza, 1992; Moore, 1999). Residual medical OOP expenses and NOOPEs can result in high financial family burden, which is defined in the literature as spending more than 10% of the family income on health care, and may lead to difficulty with paying bills or even bankruptcy. Due to the financial concerns related to nonreimbursable expenses, families may choose not to seek further medical care, delay or fail to fill prescriptions, cut drug doses, or reduce the frequency of prescribed medications, ultimately affecting patient outcomes (Banthin, Cunningham, & Bernard, 2008).

79

Background Available Evidence Researchers have captured the range of medical OOP expenses for the patient in the hospital and in the home setting, yet little has been reported on the scope and impact of NOOPEs incurred by families during a child's hospitalization. The Medical Expenditure Panel Survey (MEPS), sponsored by the Agency for Healthcare Research and Quality, is the most notable example of an ongoing annual assessment of nationally representative data estimating medical care utilization and expenses incurred by families (www.MEPS.AHRQ.gov/mepsweb/). The MEPS data collection on OOP expenses is limited to medical OOP expenses and includes the portion of the total payment for health care services made by families for hospitals, physicians, and pharmacy expenses and does not include NOOPEs (Newacheck & Kim, 2005). Although these data are extremely useful, they do not capture all of the OOP expenses incurred by families. Considering all categories of OOP spending is important as the total amount of OOP expenditures will help us to better understand the families' financial burden. Although NOOPEs are incurred by virtually every family with a hospitalized child, there is little information that specifically addresses the financial impact of NOOPEs in the hospitalized child. A comprehensive literature review revealed few dated articles that were primarily limited to a single category of disease. The results of these studies all suggest that families incur substantial financial expenditures, but there is great variability in the findings across studies due to imprecise definitions of key variables and a lack of uniformity across methodologies. This creates difficulty in being able to assess the results and to generalize the findings. The most relevant studies that discuss the financial expenditures related to NOOPEs are reviewed. A qualitative study (Callery, 1997) conducted in England examined the financial, social, and personal costs to a group of parents of children admitted to a surgical ward at a children's hospital. In this study, interviews were conducted with 24 parents after their child's discharge from the hospital. Parents were asked to share a story and talk about the topics that were most important to them during the hospitalization. Financial concerns related to the cost of food and employment issues including loss of wages and vacation time were expressed by several parents. Parents needed to purchase food not only for themselves but also often for their child who requested special items. To defray some of the costs, many parents reported asking family members to bring in food from home. Eleven mothers in the study were employed outside of the home, and in addition to loss of wages, mothers were concerned about losing their reputation as good workers. The unpredictability of the costs and the length of time away from work were also major stressors expressed by families. Although the specific monetary costs were not reported in this study, the results demonstrate that

80 the financial costs of hospitalization are a common cause for concern for parents. Wasserfallen, Bossuat, Perrin, and Cotting (2006) calculated the total NOOPEs for 15 families of children who were hospitalized in the pediatric intensive care unit (PICU) in Switzerland. Parents were asked to keep a diary of all NOOPEs including meals, travel costs, communication costs, gifts to child and the family, loss of income, and other expenses directly related to the hospitalization such as cleaning or pet care. Combined, these 15 families spent 695 days in the PICU, and each family spent an average of 86 Swiss Francs (CHF) or approximately $69.13 per day, which calculates CHF 2,616 or approximately $1,997.16 per month. Over the entire hospital stay, these families collectively spent an average of CHF 4,078 or approximately $3,113.31 (1 CHF = $0.80 in 2005). The two major expenses reported by families were related to travel and meals. Data on loss of earnings were not included in these figures. On the basis of these results, the NOOPEs incurred by a family of a hospitalized infant are considerable. Another English study (McLoughlin, Hiller, & Robinson, 1993) had a very limited focus and examined only the financial cost of traveling to visit a hospitalized infant over a prolonged time, which was defined as greater than 10 days. The researchers interviewed 93 mothers of low-birth-weight infants admitted to the neonatal intensive care unit. Eightyeight percent of the mothers visited their infant daily, with many of them reporting traveling difficulties due to the distance and the expense. The cost of travel for one third of the study participants was more than 220 British pounds or approximately $407.00 (1£ = $1.85 in 1992). Only 28% of the families in the study received any assistance with traveling expenses. Because preterm deliveries are often unexpected, many of the families did not anticipate or budget for the expenses incurred from neonatal visiting. Leader et al. (2003) calculated the time and NOOPEs associated with the hospitalization of infants with respiratory syncytial virus in 10 geographically diverse hospitals in the United States. Parents of 48 preterm and 36 full-term infants were asked about their NOOPEs and expenses for up to four visitors including travel, parking, meals in the hospital, added child care, and other expenses incurred during the hospitalization. The total average NOOPEs were reported as $643.69 for preterm infants and $214.42 for full-term infants. When loss of productivity was added, the average economic burden per admission increased the total to $4,517.00 for a premature infant and $2,135.00 for a full-term infant. The financial burden related to NOOPEs has been best described in the oncology literature and has focused on patients receiving treatment in the outpatient setting. Lansky et al. (1979) examined the NOOPEs associated with childhood cancer. Parents of 70 children with cancer were asked to record expenses including NOOPEs and lost wages for a period of 1 week every 3 months. The NOOPEs were added to lost wages and were expressed as a percentage of the family's weekly income. During the week of data collection,

R. DiFazio, J. Vessey some of the children received outpatient treatment, whereas others were hospitalized. Families whose children were hospitalized experienced the highest NOOPEs. For over half of the families including patients who were treated outpatient and those treated inpatient, the total NOOPEs combined with loss of income accounted to more than 25% of the family's weekly income. Lansky et al. found that after the disease itself, the financial concerns related to NOOPEs were the primary source of stress for the families because they must be paid for immediately (Lansky et al., 1979). Birenbaum and Clarke-Steffen (1992) conducted a study to describe both the medical and nonmedical OOP costs of health care in the terminal phase of childhood cancer and to compare the costs of terminal care in the hospital versus at home. All children in the study received care at one of two children's hospitals in the northwestern part of the United States. Telephone interviews were conducted 16 months after a child's death to retrospectively collect information on all OOP health care costs. The median income loss was reported at $1,455 per family. The median cost of NOOPEs including such items as transportation, housing, telephone, and sibling care was $1,099, incurred over an average of a 2-month time. Medical OOP costs accounted for 12% of the total health care costs for families, whereas NOOPEs accounted for an additional 12%. In this study, the NOOPEs incurred by families are as great as the medical OOP expenses. A recent qualitative study (Connor, Kline, Mott, Harris, and Jenkins, in press) was completed to describe the cost burden experienced by parents of hospitalized children with congenital heart disease. Twenty parents were interviewed and asked to share their perception of the cost burden and describe the medical expenses, OOP expenses, and NOOPEs incurred by families. Two categories emerged from the data: lifestyle change and uncertainty. OOP expenses came up as a concern in both of these categories. Parents reported that the long-term OOP costs associated with hospitalization were unpredictable and stress provoking. Many families had not prepared for the amount of money needed during the hospitalization for such items as food and lodging. The families' perception of financial impact was dependent on their baseline socioeconomic status. On the basis of current information, the total associated costs of NOOPEs on families are unknown. However, even in countries with socialized medicine, all indications suggest that NOOPEs can create financial and psychological burdens on families (Callery, 1997; Leonard et al., 1992).

Hospitalization, NOOPEs, and Family Response Family stress resulting from NOOPEs is moderated by several factors including (a) the acuity and length of hospitalization, (b) family wealth, (c) the family's ability to plan ahead, (d) savviness in negotiating resources, and (e) available family-centered hospital and community sources of support. For children with planned short-term

Nonmedical Out-of-Pocket Expenses hospitalizations, such as after tonsillectomies or cleft palate repairs, and from financially secure families, NOOPEs that are incurred can be relatively easily assimilated into the family's budget. Families of children with chronic conditions such as cystic fibrosis or Crohn's disease who are hospitalized frequently, however, are more likely to incur financial burden. Many of these families have developed strategies for minimizing such costs, such as availing themselves of free or discounted hospital-sponsored accommodations, requesting parking and cafeteria vouchers, and using services available though various nonprofit organizations and private philanthropic foundations. A third group of families are those whose children have been unexpectedly hospitalized for a severe or catastrophic illness or injury or whose children's hospitalization has been surprisingly extended due to complications. Examples include those children who have spinal cord injury from trauma or who have developed a postoperative methicillin resistant Staphylococcus aureus infection. For these families, the hospital admission is usually a crisis. The financial obligations that they may be incurring during the hospitalization are often an afterthought. It is not until later that they realize that the extended hospitalization, often associated with significant rehabilitation or a prolonged recovery period, has resulted in numerous OOP expenses. When families recognize the total amount of expenses that they have accumulated during hospitalization, they are frequently shocked. The impact of NOOPEs is of a particular concern for young families with hospitalized children where caregiving demands are high, but financial resources are limited. These families often have had limited experience in negotiating complex systems or in advocating for themselves. For families who are already living on the financial margin, all hospitalizations are economically traumatic. In the face of mounting financial burdens, parents often are forced to reluctantly curtail the time spent at the hospital with their children with illness to return to work and resume other family caretaking activities. In nonemergent situations, parents may defer or delay recommended care for their children due to financial concerns (Vessey & Brown, 2010).

Strategies Family-centered care serves as the underlying conceptual foundation for the way care is provided for hospitalized children. The psychological and economic impact on the entire family must be considered (Bamm & Rosenbaum, 2008). Family-centered care is based on the belief that the family is often the child's most valuable source of support, and families who function well can help their children cope more effectively with their situation. Significant illness, injury, and hospitalization are all situational stressors and have the potential to disrupt a family's equilibrium, even to a state of crisis. These stresses often impair parental coping, and when such stress is transmitted to a child with sickness, it

81 further undermines his or her well-being (Vessey, 2003). External support can help families to better cope with such stressors. Support is most beneficial when it takes into account a family's strengths and limitations. Families can draw on prior experiences and learn to develop specific problem-solving strategies that would be beneficial to them and can be readily operationalized in their situation. Because pediatric health care professionals including nurses, social workers, child life workers, and patient advocates can often readily identify potential family stressors, they are in the position to offer proactive strategies that can prevent or ameliorate these issues. Ideally, this will be done using a team approach. The result will be more positive psychosocial outcomes recognized by families and their child with sickness. Although most pediatric facilities purport supporting family-centered care, their commitment to helping families identify and access resources to offset NOOPEs varies. Service provision for NOOPEs is mediated by the hospital's mission and administration and staff vision. Gatekeepers of services are sometimes reluctant to promulgate services they have to nursing staff or families as resources are limited and reserved for the neediest of cases. Restricting this information may hinder deserving families from receiving desperately needed services. Moreover, in such an atmosphere, families that receive such services may be unwittingly made to feel like “charity cases,” undermining parental selfesteem. Although the range of services is structured differently across medical facilities, what is first required is that those individuals who interface with families of hospitalized children recognize the potential financial and psychological burdens of NOOPEs and the availability of resources within their institution. Assessment and Planning Integrated care protocols are needed so that preadmission planning is implemented as part of the admission process. Ideally, initial assessment would be conducted during the preadmission evaluation for children who are to be hospitalized for complex care. This includes all children with significant developmental and physical comorbidities, such as children with profound cerebral palsy admitted for orthopedic procedures, when complications and prolonged hospitalizations often occur. In some cases, the availability of resources (i.e., free or discounted lodging) may even influence the timing of scheduled admissions. When hospitalization does occur, the assessment and plan for services need to be conveyed to the nurses and staff on the inpatient unit at the time of admission to help ensure seamless service provision. For unplanned hospitalizations, initial assessments will likely be a nursing responsibility at the time of admission. Regardless of the site, a set of specific intake assessment questions such as “Have you found any aspect of your stay particularly financially burdensome?” and “Do you need financial assistance for expenses incurred during your

82 hospitalization?” need to be routinely incorporated. For those children whose hospitalizations are extended, a change in status should trigger revisiting these assessments. It is important to begin the assessment early on in the hospitalization. When hospitalizations are unplanned, families are often “in the moment” and do not realize the longterm impact that NOOPEs may have to their family's financial health. Nurses are often not in the position to directly address these issues alone. Referrals to patient advocacy, social services, other hospital departments (e.g., parking office), or community advocacy groups will be necessary. Social workers and family advocates can play a critical role in identifying family financial stressors and informing families about available resources. These professionals can participate both in the preadmission assessment and in daily inpatient rounds. Because most resources are limited, offered either on a first-come basis or by severity of need, it is crucial that nurses advocate for families in need. Advocacy is twopronged—focusing on obtaining resources and helping deserving families accept them. Often, families, despite being in a difficult financial situation, are reluctant to take advantage of resources as they may feel that other families are in more acute need. Care must be taken not to make one family look or feel more deserving than another. Creativity and Service Provision Hospitals with a clear commitment to family-centered care have shown boundless creativity in the range of resources they provide. Some children's health care facilities have Ronald McDonald Family Rooms located adjacent to patient rooms; these friendly environments include sleeping, showering, laundering facilities, and a refrigerator stocked with food that parents can access for free at any time, day or night. Some facilities also have a family business center. Others provide free computer access to parents, some with Skype service, or free wireless Internet access for parents who have their own computers. Such services facilitate communication among families and friends and help parents work offsite, preserving precious paid-leave hours and maintaining their employment status. Parents may communicate with family and friends through care pages. One example of a commonly used care page is Caring Bridge (www.caringbridge.org). Care pages help families to communicate with everyone at once rather than having to make numerous and expensive telephone calls. Many children's health care facilities have designated Centers for Families, which are dedicated to helping families find information and resources about their child's condition and inform them about available hospital and community resources. Although numerous, family-friendly services are offered, the usefulness of such dedicated spaces is predicated on their proximity to a child's room, staffing, and the hours that they are open. For families to fully appreciate such services, hours cannot be restricted to a daytime, Mondaythrough-Friday schedule as this is when parents are most

R. DiFazio, J. Vessey needed by their child to provide care, help with treatments and procedures, or meet with health care providers. Embracing an interdisciplinary community approach will help identify the nexus of available resources. For example, many major medical centers have Ronald McDonald houses (http://rmhc.org), whereas others have similar types of housing programs for the families of sick children. These may include substantial discounts from neighborhood hotels or programs such as Hospitality Homes (http://www.hosp. org/index.htm), where vetted volunteer families in the community provide free lodging for family members. Some states have relief funds for families experiencing catastrophic illness. For example, the Commonwealth of Massachusetts sponsors the Catastrophic Illness in Children Relief Fund (http://www.mass.gov/cicrf/) for families that have experienced extraordinary OOP expenses. Although usually these monies are directed toward health-related expenses of the child, they may also cover travel costs to health care facilities. Unfortunately, families may often be deterred from applying for these funds due to the lengthy application process. The Family and Medical Leave Act (FMLA) (http://www.dol.gov/esa/whd/fmla) is a federal law that allows covered employees to take extended time away from work, up to 12 weeks a year, without fear of losing their job. Although FMLA provides job security to family members, it does not provide direct financial support for NOOPEs. Many proactive strategies require few resources to operationalize. One children's hospital lists a wide range of services available to families on the back page of their telephone directory, such as where to get free over-thecounter medications for parents and where free or discounted laundry facilities are located. These resources can be readily accessed by all employees, making it easy for any staff member to help parents with simple needs. Other hospitals have links on their web sites or provide fliers to families at admission, providing descriptions with varying levels of specificity of the resources available. Still, others use trained volunteer advocates to help families locate resources and services for identified needs. Even simple activities, such as knowing what area restaurants offer “early-bird” dinner pricing, clipping “two-for-one” dinner coupons, and so forth, can help make a difference to families in need. In addition, team members on units that are disease specific, such as oncology, can refer parents to resources offered by appropriate not-for-profit organizations or foundations. Advocacy The true scope of the burden families' face has not been clearly explicated and may not be recognized by medical facility administrators or their boards. Nursing has the wherewithal to help hospital administrators recognize the potential negative impact of NOOPEs and see both the humanitarian and marketing values of offering helpful services. They then can make specific suggestions as to how children and their families may be better served. This is

Nonmedical Out-of-Pocket Expenses best done working within the institutional context to develop and disseminate interdisciplinary policies that help make these resources more transparent to all hospital personnel and available to families. The following case study depicts likely costs that a family may incur with a 1-week routine hospitalization and how these costs may be minimized with proactive nursing interventions. To implement these interventions, nurses must understand the resources available to patients in the various departments throughout the hospital: social services, financial office, center for families, and the parking office. The hospital intranet can also be a valuable resource to nurses and families by providing information about local discounted hotels, local stores to purchase food, local clothing stores, pharmacies, and community resources (houses of worship, etc.).

Case Study K.G. is a previously healthy 14-year-old girl who lives at home with her parents and two younger brothers, aged 8 and 11 years. She was diagnosed with progressive idiopathic scoliosis at the age of 12 years. She was initially treated nonoperatively with a brace, but her curvature progressed to 57°, and surgical intervention was recommended to prevent further progression and to correct the deformity. The family agreed to proceed with surgery, and preoperative teaching was initiated by one of the orthopedic nurses in the outpatient clinic. The nurse discussed the postoperative course and told the family that K.G. would be admitted to the hospital for 6 days after her spinal fusion. Only one parent would be able stay at the bed side during the night due to space limitations. The other parent would have to stay at a local hotel or commute to home. The nurse provided the family with information about local discounted hotels. Because the family had to drive 4 hours to get to the hospital, the nurse recommended that the family stay at the hotel the night before surgery to ensure that they arrived on time for surgery the following morning. The resources available on the inpatient units were explained to the family by the nurse, including access to a kitchen with a refrigerator and a microwave oven where they would be able to store food for their child and themselves. The nurse encouraged the family to bring food if possible to save money. The nurse also provided the family with information about local discounted dining options. The family did not think that it would be possible for them to prepare and bring much food because they had to travel from such a far distance and did not have any friends or family who lived near the hospital. The nurse asked the parents about their employment status and about sibling care during the hospitalization. The mother reported that she is currently not employed and that the father will be able to take 1 week of unpaid time off to be with his daughter for the surgery. K.G.'s father works as a plumber and has an annual gross income of $50,000 and a net income

83 Table 2 Estimated Expenses for Elective Surgery With a Six-Night Hospitalization Expense item

Costs ($)

Travel to and from hospital—400 miles round trip (Internal Revenue Service rate = $.52 per mile) Meals for parents Breakfast ($5/day/parent/8 days/2) Lunch ($7/day/parent/8 days/2) Dinner ($10/day/parent/8 days/2) After-school program for siblings ($125/child/week/2) Gifts for aunt providing overnight care Hotel (at reduced rate of $178.80/night/7 nights) Parking (at reduced rate of $9.00/day/7 days) Incidental expenses (over-the-counter medications and toiletries for parents, laundry, special clothing for child to fit under or over brace, presents or gifts for hospitalized child) Loss of wages (1 week of loss wages at $50,000/year) Total

208.00

80.00 112.00 160.00 250.00 50.00 1,251.60 63.00 200.00

962.00 2,374.60

of $35,000. The mother's sister will take care of the other children, but they would need to be placed in extended day care after school until her sister finished working in the evening. Fortunately, such arrangements could be readily made through their town's community center. The family expressed some concern about the cost of staying with their child during the hospitalization, but they felt that it was important for both of them to participate in the child's care and be there to support each other. The estimated NOOPEs were calculated for their child's surgical procedure with a six-night stay in the hospital. The expenses are listed in Table 2. The expenses from one uncomplicated hospitalization, including loss of wages, constitute approximately 6.5% of the family's available annual income. Moreover, these expenses are above and beyond any additional medically related OOP expenses or other nonmedical expenditures incurred preoperatively and postoperatively. Collectively, these health care expenses could easily top 10% of the families' income, placing them in the high financial burden category with one relatively straightforward health care encounter.

Conclusion Although NOOPEs are anecdotally known to cause stress in many families and can even result in extreme financial burden, financial costs associated with a family's NOOPEs during the hospitalization of their child remain invisible to most health care providers and policy makers. Nurses are in the ideal positions to recognize the financial and psychological tolls to families that are brought on by the hospitalization of a child. Proactive planning for NOOPEs is an important nursing contribution that can help advance family-centered care.

84 Although current efforts by policy makers focus on developing more cost-effective health care, there is a surprising lack of research that attempts a full evaluation of health care costs. Studies are needed to better understand the impact of NOOPEs on families' financial well-being, stress, and health care decision making. Cost-effectiveness analyses are needed so that the full range and impact of all direct and indirect medical costs and nonmedical costs associated with the hospitalization of a child are realized. Such data will allow policy makers to be better able to make decisions regarding the full cost of hospitalizations and their impact on families. Providing true, family-centered care demands nothing less.

Acknowledgments The authors would like to thank Karen Cox, Ph.D, RN, FAAN, executive vice president of Children's Mercy Hospitals and Clinics for her thoughtful contributions and Alison Clapp, MLS, Manager of Library Services at Children's Hospital, Boston for her careful search in identifying related literature.

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