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Service Delivery Innovation Profile

Periodic, Nurse-Initiated Telephone Contact Provides Quality Followup Care to Infants With Lung Disease in Rural Areas


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Snapshot

Summary

A nurse specialist maintains regular telephone contact with the primary caregivers and health care providers of premature infants with chronic lung disease who are discharged from the hospital. The program is targeted at families living in rural areas who often find it difficult to repeatedly travel to a faraway medical center for necessary followup care. Infants receiving telephone-based care had similar developmental and health outcomes as those receiving traditional care, suggesting that the program enhanced access to followup care without having any negative impact on overall quality. This approach is believed to be the first application of telephone followup care to an infant population.

Evidence Rating (What is this?)

Strong: The evidence consists of a RCT comparing key outcomes from telephone-based care to traditional center-based care. The study found no differences in outcomes across the two groups, indicating that the innovation achieved similar outcomes to the usual care for patient who would otherwise have difficulty accessing usual care.
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Developing Organizations

Wake Forest University School of Medicine
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Date First Implemented

1996
March 1996 (beginning of a 5-year trial)begin pp

Patient Population

Age > Infant (1-23 months); Newborn (0-1 month); Vulnerable Populations > Rural populationsend pp

Problem Addressed

Premature infants with chronic lung disease need comprehensive, coordinated followup care, which can be difficult and expensive for families living in rural areas who may find it hard to access faraway medical clinics that traditionally provide such care. Nurse-led, telephone-based followup is designed to enhance access to these much-needed services by eliminating the need for the family and infant to travel to and from the medical centers.
  • A prevalent condition that can lead to many negative outcomes: Chronic lung disease is the most prevalent chronic illness among very low birthweight infants, and it can lead to respiratory illnesses, growth failure, hospital readmissions, and financial and psychosocial costs for families. Even after recovery, children who had chronic lung disease as infants are at increased risk for cognitive impairment, motor and language impairment, hearing loss, and poor academic performance.1
  • The need for comprehensive, coordinated followup care: Premature, low birthweight, and very low birthweight infants, including those with chronic lung disease, need comprehensive and coordinated care, which has been shown to decrease the risk of serious illnesses that require hospitalization in the first year of life.2 The typical regimen at Wake Forest University School of Medicine is for premature infants with chronic lung disease to have at least four clinic visits during the first year of life, with additional visits for those infants needing supplemental oxygen therapy.
  • Difficult access for rural, low-income families: Rural families, especially those with limited financial resources, may find it difficult and/or prohibitively costly to periodically travel to a distant hospital or specialty clinic to receive followup care. High transportation expenses, other transportation barriers (e.g., difficulty in transporting an infant on oxygen therapy), family issues (e.g., parents with no one to care for their other children), the inability to take time off from work, and other constraints may limit the ability to travel for this much-needed care.

What They Did

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Description of the Innovative Activity

A nurse specialist maintains periodic contact with the primary caregivers and providers of premature infants with chronic lung disease who are discharged from the hospital. The followup care is designed to monitor the infant's health and family situation and to make changes in medical management or other support resources as needed. Key elements of the intervention are described below:
  • Identifying candidates for the program: Any infant with chronic lung disease who is not on a ventilator and has not had a tracheostomy is eligible for the program. (Ventilator patients and those who have had a tracheostomy are thought to be so ill as to require inperson followup care.) A discharge planning nurse meets with the parents of these infants to explain the telephone followup care option. Those who are interested can take part in the program (although, for evaluation purposes, the program randomly assigned interested families to an intervention and control group). An introductory letter explaining the program is mailed to the regular primary care provider of all infants who enroll in the program.
  • Providing telephone service: Participating families who lack telephone service are provided with a phone at no cost within 1 week of the infant's discharge. All participating families are also reimbursed for the cost of local telephone service.
  • Nurse specialist initial meeting: All families have a face-to-face meeting with the nurse specialists in their homes. During this meeting, the nurse provides educational information on chronic lung disease, including available resources to support the family.
  • Nurse specialist telephone followup: A nurse specialist calls the infants' primary caregiver twice a week for the first month after discharge, weekly during months 2 through 4, and then monthly until the infant reaches an "adjusted age" of 1 year (i.e., 1 year past the infant's expected due date). During the calls, the nurse uses a structured questionnaire to:
    • Assess the infant's health, including medications; feeding habits; signs of respiratory distress, such as dyspnea or gastroesophageal reflux; immunization status; and developmental milestones. If necessary, based on the information provided, the nurse can encourage the family to take the infant to his or her primary care provider or to a pediatric pulmonary specialist.
    • Identify potential sources of stress and support for the family, including what community resources the family is using or may need. The nurse specialist can arrange for the services of home health nurses, public health nurses, early intervention specialists, physical therapists, pediatric subspecialists, and other clinical and community-based resources that might be required to support the infant and family in the home and/or local community.
    • Communicate recommended changes to the family and provider: The nurse communicates any recommendations via telephone to the family and the infant's primary care provider.
  • Resources to support the nurse: The nurse can use several resources to assist with the telephone-based followup care:
    • Written management protocol: The nurse and other caregivers use an established written protocol for the management of chronic lung disease in neonates, which was developed by Wake Forest University School of Medicine based on a National Institutes of Health consensus conference. This guideline is also mailed to each infant’s primary care provider as a part of the introductory letter.
    • As-needed consultations with neonatologist and social worker: The nurse consults with a neonatologist if he or she believes that a change in medical management, additional testing (e.g., a pulse oximetry), and/or a referral to a subspecialist may be necessary. The nurse also has access to a social worker to assist with any psychosocial issues, community resource needs, or other relevant problems.
  • Toll-free access to nurse specialist between calls: Family members can call the nurse specialist at any time via a toll-free long distance line; a voice mail system allows families to leave messages for the nurse when the line is not answered. The nurse is typically available between 8 a.m. and 6 p.m.
  • Special services for those infants needing oxygen therapy: Before discharge, a respiratory therapist meets with the families of those infants who need at-home supplemental oxygen therapy to teach them how to use the oxygen and cardiorespiratory monitors. Respiratory therapists also visit the infants' homes approximately once a month to ensure the proper functioning of the equipment and to perform pulse oximetry testing. These services are provided by contracted therapists and generally paid for by third-party insurers.

Context of the Innovation

Wake Forest University School of Medicine is a large medical school that is affiliated with the North Carolina Baptist Hospital (a 1,187-bed facility with acute care, psychiatric, and long-term care beds) and the Brenner Children's Hospital (a 160-bed "hospital within a hospital" that serves young patients). In 1986, the medical school developed a multidisciplinary clinic to house all of the relevant caregivers for infants discharged with chronic lung disease. This integrated clinic replaced the prevailing model of care, which required families to travel to multiple locations for followup care, including to a pediatric pulmonary clinic, a nutritionist, and a neonatologist. In some instances, these families received conflicting advice from their different providers and had to endure redundant testing.

Although better than the old "siloed" approach, this multidisciplinary clinic still had its drawbacks, particularly for families who lived far from the medical school and found it difficult to travel for followup care. (Wake Forest University School of Medicine serves a 17-county geographic region in northwest North Carolina, with some patients traveling 100 or more miles for care.) A neonatologist at Wake Forest became aware of the work of one of his colleagues, a nurse researcher, who had developed and tested a telephone-based followup program for women facing high-risk pregnancies. An RCT demonstrated the program's effectiveness, as did other evaluations of similar models used for adults who have diabetes and congestive heart failure. After reviewing this evidence, the neonatologist believed that this kind of model could also be applied to infants with chronic lung disease, and he began working with his colleagues to do so. This approach is believed to be the first application of telephone followup care to an infant population.

Did It Work?

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Results

A 150-subject randomized controlled trial (RCT) found that telephone-based nurse specialist followup yielded similar developmental and health outcomes as traditional, institution-based followup care for premature infants with chronic lung disease. This finding implies that access to quality care can be enhanced by offering telephone followup to those individuals who live in rural areas or otherwise find it difficult or impractical to travel for such care.
  • Similar levels of cognitive functioning: A comparison of cognitive function at an adjusted median age of 12.3 months (using the Bayley Scales of Infant Development, Second Edition, mental developmental index) found no difference between the telephone- and hospital-based groups.
  • Similar developmental and health outcomes: The study found no differences between the groups in psychomotor development, adaptive behaviors, neurodevelopmental impairment, or hospital readmissions during the first year of life. Those infants receiving telephone-based followup care did have higher rates of growth delay, but this difference was not statistically significant.
  • Ongoing studies related to other outcomes: Studies comparing the costs, care processes, satisfaction with care, and psychosocial outcomes of the two approaches are currently under way.

Evidence Rating (What is this?)

Strong: The evidence consists of a RCT comparing key outcomes from telephone-based care to traditional center-based care. The study found no differences in outcomes across the two groups, indicating that the innovation achieved similar outcomes to the usual care for patient who would otherwise have difficulty accessing usual care.

How They Did It

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Planning and Development Process

Key steps in the planning and development process include the following:
  • Adapting the model from high-risk obstetrics: A multidisciplinary team consisting of a nurse researcher, neonatologist, and nurse specialist adapted the obstetrics model to the infants with chronic lung disease population. Key issues that needed to be resolved included the structure, frequency, and length of the phone calls; contingency plans for the nurse to use when a problem is identified during the call; and strategies for building trust with the families (the team decided to have an initial face-to-face visit to help establish trust).
  • Developing the protocols and structured questionnaire: The multidisciplinary team also developed the management protocols to guide care delivery for chronic lung disease and the structured questionnaire that was used by the nurse during the telephone calls.
  • Getting physician and nursing staff buy-in: Because Wake Forest University School of Medicine had only two neonatologists who were interested in providing followup care to infants with chronic lung disease (one of whom was a champion for the program), there was relatively little physician resistance to the idea. (Physician resistance could be a big issue for other organizations interested in adopting this model.) Nurses, however, were somewhat skeptical. To "win" them over, meetings were held in which program champions clearly explained the rationale for the approach and shared data on the effectiveness of the model in other populations, including with high-risk pregnancies at Wake Forest. During these meetings, program supporters also emphasized the benefits to families (e.g., paying for phones and phone service, preventing the need to travel), the significant experience and expertise of the individuals involved, and the evidence-based protocols and questionnaires that support the program.

Resources Used and Skills Needed

  • Staffing: The program includes one full-time nurse specialist who oversees the care of 50 to 60 infants at a time (and also documents time-tracking data and other information for program evaluation purposes), a half-time social worker who supports the nurse, and a neonatologist who is available for consultations. As noted, contract respiratory therapists who make home visits bill insurers directly for their services.
  • Costs: No estimates of the total cost of the program have been made. The largest cost is personnel—the full-time nurse specialist and the half-time social worker. Other costs include the purchase of telephones for families who do not have them and paying for local telephone service for participants.
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Funding Sources

Agency for Healthcare Research and Quality
The program was initially funded in 1996 with a 5-year grant from the Agency for Healthcare Research and Quality (AHRQ) that covered the salary of the full-time nurse specialist and half-time social worker, a portion of a neonatologist's salary, and the purchase of telephones and local telephone service for participating families. The state of North Carolina also provided a small amount of funding, while Wake Forest University School of Medicine provided in-kind contributions (e.g., space). This telephone-based followup care program ended due in large part to the lack of available funding after the AHRQ grant period ended. However, now the program is getting underway with funding from Wake Forest Baptist Health, their academic medical center.end fs

Adoption Considerations

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Getting Started with This Innovation

  • Consider pilot testing the program with infants who have relatively mild disease, as this approach may help to prove the model's effectiveness to skeptics. The program can be expanded over time to include more ill patients, although infants on a ventilator or who have had a tracheostomy should likely be excluded.
  • Develop contingency plans for how a nurse should respond if a problem is identified during the phone conversation, and provide the nurse with access to a neonatologist for immediate consultation.
  • Have the nurse meet face-to-face with all participants to build trust, credibility, and a rapport with parents.
  • Use a nurse or physician extender with significant experience in chronic lung disease and home-based, neonatal, and pediatric office–based care to provide the telephone followup.

Sustaining This Innovation

  • Develop structured educational materials for families. Wake Forest University School of Medicine did not have a structured presentation for families on oxygen therapy and other important issues. As a result, families sometimes lacked a basic understanding of the disease.
  • Be flexible with respect to the frequency of phone calls. The need for phone calls tends to diminish over time and may vary from patient to patient.
  • Stay in regular contact with the infant's primary care provider, including sending a letter that initially explains the program and providing updates after the nurse's phone conversations with parents.
  • Consider having a nurse specialist available via telephone 24 hours a day for parents who might have questions or otherwise need assistance. Having a nurse available only during normal working hours is not considered to be ideal.
  • Find ongoing sources of funding to support the program, including approaching insurers about potentially providing reimbursement for telephone-based services. (Most insurers do not pay for these services today.) As noted, Wake Forest University School of Medicine decided to suspend the program after the initial AHRQ grant funding ended. However, they now have funding from their academic medical center, Wake Forest Baptist Health.

Additional Considerations

  • This innovation may have applicability for infants with other chronic illnesses or conditions that require ongoing followup care, particularly for families who live far away from tertiary medical centers or who face other barriers to traveling for periodic followup care.

More Information

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Contact the Innovator

Michael O'Shea, MD, MPH
Professor of Pediatrics
Wake Forest University School of Medicine
Winston-Salem, NC 27157
Phone:(336) 716-2529
Fax: (336) 716-2525
E-mail: moshea@wfubmc.edu

Innovator Disclosures

Dr. O'Shea reported having no financial interests or business/professional affiliations relevant to the work described in this profile.

References/Related Articles

O'Shea TM, Nageswaran S, Hiatt DC, et al. Follow-up care for infants with chronic lung disease: a randomized comparison of community- and center-based models. Pediatrics. 2007;119(4):e947-57. [PubMed]

Footnotes

1 O'Shea TM, Nageswaran S, Hiatt DC, et al. Follow-up care for infants with chronic lung disease: a randomized comparison of community- and center-based models. Pediatrics. 2007;119(4):e947-57. [PubMed]
2 Broyles RS, Tyson JE, Heyne ET, et al. Comprehensive follow-up care and life-threatening illnesses among high-risk infants: a randomized controlled trial. JAMA. 2000;284:2070-6. [PubMed]
Comment on this Innovation

Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: April 14, 2008.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: April 09, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: March 30, 2014.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.