Growing in Maturity and Care: Planning For The Continuing Care of Pediatric Patients With Chronic Conditions

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Growing in Maturity and Care: Planning for the Continuing Care of Pediatric Patients with Chronic Conditions By Janice Zimmer, RN  Children’s Hospital of Pittsburgh of University of Pittsburgh Medical Center (Children’s) has implemented successful models for providing long term planning for pediatric patients with chronic conditions and transitioning them to adult care. This article examines these models and the role of care management and social workers in the care planning and transition process. Children’s is a 260-bed pediatric institution located in Pittsburgh, PA.

PHYSICIAN RELATIONSHIPS  A common common challe challenge nge encou encounter ntered ed in long long-term -term tre treatmen atmentt and care planning for pediatric patients with chronic conditions is the necessary changes of primary medical staff as the patients “outgrow” “o utgrow” their pediatric specialists. For patients who develop these conditions very young, their care can involve several transitions of primary physicians, including perhaps neonatologist; multiple pediatric physicians and specialists as the patient ages t roug c oo , ear y an t en at ate a o es escence; an na y t e transition to adult care physicians. More specifically, it is often the relationships developed between the patient’s patient’s family and the

pr mary p ys c an t at can create c a enges. ot pat ents an families often become accustomed to pediatricians and those with  whom they inter interact act regula regularly rly in the pediat pediatric ric setting setting.. This This issue issue ecom ec omes es es espe pecc a y me mean an ng u w t nc ncre reas as ng y ac acut utee pa patt en ents ts,,  who may may spend spend substant substantial ial amount amountss of time in the hospit hospital al and are often very attached to their attending physicians and care team. Families may also grow emotionally close to those responsible for the care of their child, and this may result in resistance to change. Many of these families also become medically savvy, and as a result, become extremely critical of any changes in their child’s care. Some barriers to the patient’s patient’s transition do not become apparent until after after that transition transition to adult care ta es place. For patients with congenital or pediatric-based conditions, a major and emerging issue is a lac of experience amongst amongst adult care providers in managing and treating such conditions. These patients are affected by ailments that are not typically considered to be adult ea t co con n t ons ns,, an as a resut, o ten pr pro ove to e pr pro o em ematc atc n the adult care setting. Many adult specialists now responsible for the care of of these patients lac significant experience to to treat such such pe atr c- ase con t ons, ue s mp y to t e a ct ct t at suc ssues have not been prevalent in adult care until recently as medical advances have extended the lives of such patients to the point that now many live into their adult years. For instance, children with Cystic Fibrosis generally did not survive into their teens, and thus  weree rarely  wer rarely seen seen in in adult adult care. care. Wher Whereas, eas, toda todayy the avera average ge lifespa lifespan n for Cystic Fibrosis patients is approximately 30 years, according to the National Heart, Lung, and Blood Institute.

 Aging Out”  Reimbursement becomes an issue during the transition process, as many patients begin to “age out” of their current insurance coverage, coverage, and must ma e the necessary necessary arrangements  with an adult adult insuran insurance ce provi provider der.. Some Some patients patients qualif qualifyy for Med Medical ical  Assistance  Assis tance,, which which can serve as a secon secondary dary payer payer in in the state of enns en nsyy va van n a or t os osee w o ar aree co cove vere re y a co comm mmer ercc a ns nsur urer er as their primary form of insurance. Once these patients reach the age of adolescence and approach transition, they may exhaust their ene ts rom rom t e r pr mary ns nsurer, ut w rema n ns nsure y t e r secondary provider. provider. Problems arise when these patients also age out of their secondary coverage, and must find an appropriate insurer who will continue their coverage. Care an Setting Requirements Requirements of Certain Benefit Benefit Programs  Programs  Funding and reimbursement issues also affect the types of adult services available to transitioning patients. In Pennsylvania, there are a number of differences between adult services and the services provided for children. For instance, Pennsylvania offers a state ventilator program for children suffering from respiratory conditions.. This program is reserved strictly for children, and offers conditions them private duty nursing in the home for 16 hours a day day.. Medical  Assistanc  Assis tancee programs programs gene generall rallyy serve serve as seco secondary ndary payer payerss for the program, and cover ventilator dependent children until they reach 21 years of age. However, once these patients turn 22, the reimbursement stream is dissolved. Patients who have received care in the home are now no longer eligible to receive funding through t e sta tatte pr pro ogr gram am.. s a resut o t e ac o un ng, t e pa patt en entt ma mayy need to be be placed into a long-term s illed nursing facility facility..

REIMBURSEMENT CHALLENGE CHALLENGES S

THE TRANSITION MODELS The most challenging element of care coordination for pediatric patients with chronic conditions, for both patients and the care team, is managing the transition from pediatric to adult care. At Children’s, this transition is expected to occur by the time the patient reaches the age of 22, and requires extensive collaboration between nurse case managers, managers, social wor wor ers and the entire entire care team. In the pediatric setting, a transition may be defined as the point at which a patient must be transferred from pediatric care to the adult care setting. The goal of the transition process is to ensure that

 As with with most most long-term long-term care plann planning, ing, arrang arranging ing funding funding for care is a ey component of the overall overall plan. With pediatric patients, however,, several unique challenges can arise as these patients age however nto m e an ate a o escence an t en trans t on to a u t care.

the patients’ move to the next level of care is done in an efficient manner, and does not disrupt their treatment. For chronically ill patients, this transition is a thorough process that not only involves movv ng rom mo rom a pe at atrr c an to a pr ma mary ry ca carre p ys c an an,, ut a so

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includes a complete transition from the care team with whom the patient and family have become accustomed to a new team of case mana ma nage gers rs an sp spec ec a st sts. s.

 which physic physicians ians from from their their pediat pediatric ric care care team team that that they they would would lili e to attend these clinics, and they may also use the clinics in whatever cap apac ac ty t ey ee w est su t t e r tr tran anss t on nee s. ome pa patt en entts

Children’s has developed transition models that have proven successful for two of their highest volume pediatric chronic con t ons: yst c ros s an c e e nem a.

 will atte attend nd only only one one clinic clinic prior prior to to their their transiti transition, on, while while others others attend all three sessions before they feel adequately prepared to ove on to t e a u t ac ty. he adult adult Cystic Cystic Fibrosis Fibrosis social social wor wor er will begin begin to wor wor with atients during these clinics, allowing for an easier transition, and thus providing a familiar member of the patient’s patient’s care team at the ext level of care. care. Allowing patients patients to ta e an active role in their care care and transition encourages growth and maturity, and sets the foundation for an active role in their own care. he transition clinics not only encourage independence and allow patients to become more comfortable with their adult care team, but they also provide an opportunity for communication etw et wee een n t e a u t car areg eg ver erss an t e pe at atrr c ca carre te team am.. or ys ystt c Fibrosis patients, patients, the ey specialists are the patients’ pulmonologists; pulmonologists; the adult pulmonologist will meet with the pediatric pulmonologist

Cysti Cy sticc Fibros Fibrosis is Mo Mo e  The model for Cystic Fibrosis is a well established transition system that has been in place at the institution for more than 25  years.. The care managers  years managers and social social wor wor ers responsib responsible le for for patients in the pediatric setting begin to educate and prepare the patient for the transition process by the time he or she is 16 or 17. Though patients may feasibly remain in pediatric care until they are 22, the care team proactively begins the process when patients are n ants y con uct ng e ucat ona ses sess ons n w c mem ers of the care team emphasize to patients’ families that their child’s condition will require continual care, and an eventual transition rom pe atr c care on to t e a u t care ac ty. s e ucat on allows the transition process to be less disruptive to the patients’ care, and occurs more as a natural progression on to the next level o trea treatm tmen ent. t. e ta targ rget et tr tran anss t on pe perr o s w en t e pa patt en entt s between the ages of 18 and 21.  At Childr Children en’’s, a ey driver driver of of the tran transitio sition n process process for Cystic Cystic Fibrosis patients is the Cystic Cystic Fibrosis social wor wor er. The Cystic Fibrosis Fibr osis social social wor wor er in the pediat pediatric ric setting setting wor wor s closely closely with with a Cystic Cyst ic Fibrosis Fibrosis social social wor er in the adult adult care facility facility to trac trac the progress of patients, in order to determine whether or not they are ready to begin the transition to adult care process. Due to the volume of pediatric patients with this diagnosis – approximately 250 Cystic Fibrosis patients are currently receiving treatment at Children’s and another 250 have been transitioned on to the adult facility,, with anywhere from 10-12 patients in transition at one facility time – Children’s created this specific position in order to aid in the tran anss t on pr pro oces esss or or t ese c ro ron n ca y pa patt en entts. s me men nt one above, the social social wor er’ er’ss role in the Cystic Fibrosis Model Model for transition begins at initial diagnosis. diagnosis. At this point, point, social wor ers mme ate y eg n to n or o rm am am es t at t e r c s care s a continual process that ages as they do, and will eventually involve a transition on to an adult facility. Familiarizing Familiarizing families with the idea of transition is a crucial step in the transition process. Once the patient reaches the age of 18 or has completed high school, they are given the option of attending three transition clinics. Two of these clinics are located at Children’s, and the third is located at the adult facility. facility. All patients are encouraged encouraged to ta e an active role in their transition, and thus patients have the primary responsibility of planning the frequency of these meetings, and determining the

to ecome am am ar w t t e pat ents case. s co a oraton between physicians provides for a smooth transition between care facilities. Children’ Children’s has an additional advantage to ensure successful tran anss t ons n t at t e tra rans ns t on c n c or ys ystt c ro ross s s a so located on the same campus. Once patients have attended the transition clinics and have determined that they are ready to transition, the Cystic Fibrosis care team evaluates the patient’ patient’ss readiness based on several several s ill levels. Some of of these s ill levels levels include include::

c e e nem a   hough the model model for transitioning patients patients with Sic Sic le Cell  Anemiaa is relat  Anemi relatively ively young in comparis comparison on to the model model for Cystic Cystic Fribosis, it has been utilized extensively and has proven successful in a number of cases. he transition for for a Sic le Cell patient patient occurs much more quic ly than for for a Cystic Cystic Fibrosi Fibrosiss patient, patient, and ta es place place over over the course of just one day. day. Sic Sic le Cell Anemia is a chronic condition condition from  which many adults adults suffe suffer, r, and receiv receivee treatme treatment nt on on a regula regularr basis. basis.  As a resul result, t, adult adult Sic Sic le Cell Cell patien patients ts are are not not faced faced with with the the

members involved. These clinics are designed to educate and prepare patients for their upcoming transition to adult care and are held every three months. Transition clinics include care teams from ot t e pe atr c an a u t ac ac t es. at ents are a owe to ent y

challenges of limited care providers and specialists. hough the timeline is compressed, the transition model for Sic le Cell patients patients has the same goals as the Cystic Cystic Fibrosis trans t on mo e . ot trans t on mo e s ensure t at t e pat ent an

 

The patient understand understandss his or her medication, and knows how to com ommu mun n ca catte pr preesc scrr pt ons an c an ange gess n t e r me cat on to the pharmacy 

 

The patient knows his or her options for airway clearance

 

The patient understand understandss his or her insurance

   

The patient can admit himself or herself to the hospital The patient recognizes his or her own symptoms without the a o paren parents ts,, an no nows ws ow to co cont ntac actt t os osee re resp spon onss e or his or her care

continued on page 12  11  

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Growing in Maturity and Care co cont nt nu nuee rom pa page ge )

s or er am y are ntr ntro uce to t e new a u t care team t roug

 w t t e new p ys c an to prope properr y assess assess t e pat ents nee s an

a series of meetings that include the patient, their family, and members from both the pediatric and adult care teams. During the trans t on ay, t e pat ent w a so tour t e ac ty an e introduced to other adult Sic le Cell patients. The model also uses a unique approach to the transition day. Social Soci al wor ers in the the Sic le Cell Cell program program recogn recognize ize that that it is important for the transition to also occur in the mind of the patient and the patient’s family. In order for the transition to be successful, the patient must detach from pediatric care and reattach to adult care. To To encourage this emotional realignment, the transition day is treated as more of a graduation to the adult care system. Patients’ friends and family are invited, and activities are planned throughout t e ay, w c e p encourage pat ents to ta e an act ve ro e n t e r transition. As a result, patient resistance/non-compliance resistance/non-compliance has significantly decreased, and patients often leave the day with a much

appropriate course of care. Successful handoffs are also facilitated by the relationships etween t e pe atr c care ac ty an t e a u t care ac ty. t s mperative that the care managers at the pediatric facility reach out and attempt to provide those responsible for the patient’s adult care  with  wit h the the inform informatio ation, n, no nowle wledge dge,, or supp support ort nec necessa essary ry to pro properl perlyy care for the patient – advocating for and ensuring their patient will be cared for appropriately in the new care setting. The transitioning atient’s condition may be unfamiliar to specialists in the adult care facility, and thus specialists from the pediatric facility may need to  wor col collab labora orative tively ly with with the adu adult lt care care spec speciali ialist st to to be be certai certain n that that they are familiar with and comfortable providing the necessary roce ro ce ur ures es an tr trea eatm tmen ents ts or or t e pa patt en ent. t. s s pa part rt cu ar y tr true ue  with  wit h respec respectt to to Cysti Cysticc Fibro Fibrosis sis pati patient ents. s. Fo Forr exampl example, e, a pediat pediatric ric espiratory espirat ory therapist may wor with therapists therapists in the adult setting who

more mo re po poss t ve ou outt oo on t e r ut utur uree ca care re..

ave a m te pr preev ous exper ence w t t ese typ ypees o paten atentts. Once a child ages out of the program, they technically are no longer eligible for care in the pediatric facility, and thus it is mportant t at t e a u t ac ty s a equate y prepare to prov e care for the patient’s specific needs once that critical juncture is eached. One major component of this preparation process is the careful examination of ancillary providers. This should be a very deliberate process process that loo loo s at the components components of care care and the contributions that each member of the healthcare team ma es to the overall care process. This examination allows for the care team to create a disciplined plan that will address the patient’s specific eeds, which may include:

KEY CONSIDERATIONS IN TRANSITIONING TO ADULT CARE oug t ey er n ma many ny as aspe pect ctss, t es esee two mo e s s ar aree a number of similarities as well. In order to be successfully utilized, it is necessary for the care team in both settings to stress the importance of the transition, not only the literal transition, but the transition that ta es place in the mind of the patient. patient. In many cases cases both the patient and the patient’s patient’s family are hesitant about the transition. Children with complex conditions spend a great amount of time in the hospital, and a nd as a result often become attached to their attending physicians and care team. It is critical then, that the patient understands that they must detach from the pediatric program and reattach to adult care. One ey way to both both promote and assess this transition transition is to heavily engage the patient and family in planning the patient’s care n t e a u t care sett ng. s ensures t at t e pat ent an t e patient’s family are actively involved in determining the transition process. The family and patient are permitted to essentially plan the tran tr anss t on pr proc oces esss n te term rmss o t m ng ng,, gr gran ante te t o ows pr proc ocee ur uree and ta es place before the patient’s twenty-second twenty-second birthday. birthday. These are major contributing factors to the success of these programs, and continue to ensure that patients are treated properly and are adequately prepared for care in the adult facility.  A major major compone component nt is the hando handoff ff from from one care team to another. One ey factor that Children’ Children’ss has found to increase the effectiveness of this handoff is the identification of what are often referred to as “physician champions.” These are physicians who will  wor to engage engage the adult adult physic physicians ians at at the next leve levell of care care..

Establishing a positive relationship between the patient and the adult care physician is critical to the care process. It is also equally important that these physicians not only facilitate the interaction etween t e pat ent an t e a u t care p ys c an, ut t at t ey wor

 

Coordinating homecare

 

Homecare medications

 

Home infusion needs

 

Working with insurance companies to ensure access to care and coverage

CONCLUSION he processes for transition at Children’s have produced positive outcomes for patients, and have gained notice amongst other care ac t es as a re resu su t – sp spec ec ca y or t e ca care re te teams ams co comp mpet eten ency cy n facilitating patient care in the “gray zone” zone” that often exists between ediatric and adult care. The models currently in place at the facility a ow t e ca carre te team am to co cont nt nu nuaa y pr pro ov e qu quaa ty ca care re or, or, an os oste terr ndependence in those complex patients they regularly treat. Janice Zimmer, RN, is t e Direc Director tor of Care Care Mana Manageme gement nt at C i dre dren n’s

Hospit Hosp ita a of Pit Pitts ts ur urgg , Uni Unive vers rsit ityy of Pit Pitts ts ur urgg Me Medi dica ca Ce Cent nter er in in Pitts Pit ts urg , PA. S e earn earned ed er di dip p om oma a in in Nurs Nursing ing fr from om t e West estern ern Penns Pe nnsyy van vania ia Ho Hosp spita ita Sc oo of Nu Nursi rsing ng in in Pitts Pitts urg , PA, and a ac e ors eg egree n syc o ogy rom a oc oc e o ege n tts urg ,

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