Finally Home – Successful Transition from Inpatient to Outpatient Care

Abstract

Children with rare malformations and their families often experience gaps in care at the interface between inpatient and outpatient sectors. They require reliable and coordinated care–extending beyond the hospital. The article highlights areas of overlap with pediatric and adolescent medicine in private practice. It also illustrates possible support systems and a best practice example. For the best possible outcome, itʼs essential to ensure multidisciplinary care across all sectors and at all interfaces.

Keywords

oesophageal atresia/esophageal atresia - rare disease - patient support - discharge management - holistic follow-up

Background

In particular, people with chronic illnesses are affected by the fragmentation of the German healthcare system. The transition from inpatient to outpatient therapy can lead to a discontinuous course of treatment, with therapy interruptions and loss of information [1].

The literature shows that parents of children with rare diseases experience the fragmentation of the healthcare system particularly strongly and often must overcome it themselves [2]. In addition, parents of children who require inpatient care as infants report insufficient support during and after discharge from the hospital [3], [4]. Parents of children with esophageal atresia (EA) have higher anxiety levels, increased stress symptoms, and a lower Quality of Life (QoL) index compared to the general population [6], [7], [8]. These values correlated, among other things, with the subjectively experienced lack of support during the transition from the inpatient to the outpatient sector [7], [8].

When a child is discharged from the surgical clinic to their home, inpatient care by a professional team ends and outpatient treatment begins. Especially in the first period after discharge, a lack of disease-specific expertise on the part of outpatient service providers poses a problem in adequately meeting the support needs of parents. This is a specific challenge of rare diseases and cannot be expected from outpatient pediatric care. Rather, it requires close support for parents and pediatricians from the expert clinic to be able to respond appropriately to specific questions.

In 2023, the German patient organization for EA (KEKS) interviewed 25 parents (or parent couples) about their experiences during and after the first hospital discharge. The results show that parents often feel inadequately prepared for discharge and, especially in the outpatient sector, have to organize and manage their childʼs care themselves [9]. It has been shown that, in contrast to the inpatient sector, parents have more control options in the outpatient sector and are more likely to make decisions together with therapeutic and pediatric staff [9]. On the other hand, therapists and pediatricians also rely more on the parentsʼ experiential knowledge. The respondents found this responsibility to be a burden and, not least, there are often disagreements between parents and healthcare professionals on specific issues [9]. The literature shows that parents want to be involved in the care process on an individual basis, especially in the form of shared decision-making [10], [11]. However, the people concerned must receive clear information about the medical problem and the available options [12], [13]. At the same time, parents do not want to feel the main burden of responsibility for decisions [10]. In this regard, the high emotional stress can have a negative effect on parentsʼ motivation to participate in the processes [10].

To make matters worse, parents often cannot explain or even know exactly what treatment their child needs at the beginning and therefore cannot pass it on to providers of follow-up and supportive care [14]. In general, people with rare diseases are dissatisfied with the coordination of care in the outpatient sector. This could be explained by the fact that coordinating tasks and better interprofessional networking are currently not remunerated [15].

In the KEKS survey, most parents expressed the wish to have a contact person who would accompany them from the beginning and, together with them, keep an eye on which symptoms require further clarification and which therapies and examinations are necessary [9].

Concepts of Support

To facilitate the transition between inpatient and outpatient care areas and to secure continued treatment, there are transitional structures, such as discharge and case management [16], [17].

Discharge management

Patients with complex service needs are particularly vulnerable to experiencing care disruptions during the transition from the inpatient to the outpatient sector [1]. To ensure continuity of care, professional discharge planning is of particular importance [1]. According to § 39, paragraph 1a of the SGB V, hospitals are obliged to effectively support patients during the transition to the next form of care [16]. Since 2017, hospitals have had to comply with the requirements of the framework agreement on discharge management [16]. This agreement sets out the goals and minimum requirements for discharge management [18].

The goal of discharge management is to ensure continuity of treatment after a hospital stay. For this purpose, the individual needs must be assessed and addressed in a structured way by means of a discharge plan [18]. All measures necessary to meet the identified need for services should be initiated by the hospital as early as possible [18]. The hospital must contact the continuing service providers as early as possible to ensure a secure transition. This also includes the transfer of information to the referring physician or family doctor. The continuing care structures must be informed, among other things, about the upcoming discharge date [18]. However, the scope of discharge management ends as soon as these tasks have been fulfilled and the patient has transitioned to the outpatient sector. Discharge management is no longer responsible for problems that arise afterward.

Case Management

Another form of support for people with complex illnesses is Case Management (CM). This is an approach from the social and health care sector that involves the “needs-based management of a case situation to deal with a personal problem” [17].

The goal is the case-related integration and coordination of care processes, especially at interfaces [19]. In addition to the objective assessment of needs, the consideration of individual and subjective needs plays an important role. These must be organized effectively and efficiently within the regional care structure [17].

A characteristic feature of CM is the assumption of multiple roles. People working in CM take on a gatekeeping position by arranging targeted services for the case. They also accompany the people through the care process and the service system. The CM represents the interests of the person to be cared for, initiates available services, and advocates for the appropriate quality and fulfillment of needs [20].

The prerequisite for a functioning CM is Care Management. This is understood as the organization and networking of service providers (e.g., health insurance companies), service providers (e.g., nursing services), and service recipients (e.g., the person to be cared for) in the local care landscape. The goal is to be able to offer a continuous, cross-sectoral care tailored to the individual case [20]. Examples of this are care support centers according to § 92c SGB XI, disease management programs according to § 137 f SGB V, and in the pediatric field the follow-up care model “Bunter Kreis e. V.” which organizes medical, nursing, and social services for seriously and chronically ill children and their families [20], [21].

A form of CM used specifically for vulnerable groups in the medical field are patient navigators [22]. These are currently being tested in model projects. The German Society for Case and Care Management (DGCC) defines patient navigators as “care and case managers for people in complex life and care situations with one or more medical indications” [19]. However, there is currently no uniform definition of their areas of responsibility and the required skills [22].

A project at the Augsburg Central Hospital as early as 2008 showed that the structured support of parents with premature babies, starting in the clinic and continuing into the home, can lead to a reduced stress level for the mother [23].

In an international context, there are already structures in which specialized nurses employed in clinics accompany families with children with congenital malformations from their first stay to follow-up care and transition (Family Liaison Nurses). They are contact persons for the families and children, but also for outpatient specialists, daycare centers, and schools. In Germany, a pilot project has established a family liaison nurse model since November 2024 for families with children with congenital malformations. In addition, there are other liaison nurse models in Germany, such as the psychosomatic liaison nurse, who accompanies and advises oncology patients, their relatives, and on-site nursing staff [24]. An evaluation showed that nursing and medical staff perceived the liaison nurse as a relief [24].

Optimizing the Transition to Outpatient Care: Important Aspects for Successful Follow-up Care

As described in the previous chapter, there are many ways to support families in the transition of their child from inpatient to outpatient care and to make this transition as smooth and effective as possible.

The pediatrician plays a central role in this. In their function as the first point of contact after discharge from the clinic, they are often the most important authority for questions about the childʼs further recovery, therapy, and general care.

The following describes key elements that should help outpatient service providers to identify individual support needs and to sustainably improve the care of patients and their families:

Structured follow-up care: coordinated care and binding guidelines

Structured follow-up care is essential for continuous, high-quality care after an inpatient stay. This includes binding guidelines and standards that both families and professionals can follow–for example, through the KEKS Health Folder or specific international follow-up care recommendations. Information about the KEKS Health Folder can be found in the article “KEKS Health Folder and KEKS Portal” in this supplement [25].

The goal is holistic and long-term, cross-sectoral care. This includes, in particular, the coordinated cooperation of various specialist disciplines and support systems. The inclusion of relevant information and findings at the time of the outpatient doctorʼs appointment is just as important as targeted communication with the discharging clinic to avoid treatment gaps.

Complete information transfer: relevant medical documents available

All relevant medical documents – especially discharge reports, surgical reports, and findings – should be available to the treating pediatrician completely and in a timely manner. This is the only way to ensure sound medical follow-up care.

Designated contact persons: clear communication channels for all involved parties

A clear contact person should be named in the discharging clinic, whom both the pediatrician and the family can contact with questions. This person does not necessarily have to be a doctor, but could be, for example, a liaison nurse or another qualified specialist.

In addition, parents are informed before discharge about how to behave in an emergency and what contact options or presentation options are available outside of regular hours. If parents have not received this information, they should be encouraged to actively request it. This can help to avoid unnecessary or emergency inpatient readmissions.

Training for families: strengthening their competence

Ideally, families receive training on emergency measures (e.g., resuscitation, dealing with bolus events, first aid for aspiration) during the initial hospital stay. The pediatrician should actively ask during follow-up care whether this training has taken place and, if necessary, suggest refresher courses.

In socio-pedagogical contexts such as settling into daycare centers, there is often a greater need for information and support – both for families and for the care facilities. Close cooperation and education about the childʼs illness can help to reduce fears and ensure adequate integration.

Networking with self-help and support services

Families should be actively informed about existing support services offered by self-help organizations – such as KEKS If this has not already happened in the inpatient setting, the recommendation to contact them should be explicitly made by the outpatient specialist.

Patient organizations offer valuable information, advice, and emotional relief to affected families.

Psychosocial support and parentsʼ mental health

Pediatricians should be aware of the emotional and psychological stress on parents and use suitable, possibly standardized, tools to assess their support needs. If necessary, a referral to psychosocial or psychotherapeutic institutions is advisable. Additional information is provided in the article “EA as a family disease” in this supplement [26].

Involvement of the Social Pediatric Center (SPZ)

The Social Pediatric Centre, as a multi-professional, outpatient facility, offers a valuable addition to the care of chronically ill children. Pediatricians should find out whether there is already contact with the regional SPZ and, if not, suggest a connection.

An appointment at the SPZ can represent a valuable extension of care and promote holistic therapy, especially for children with complex or rare diseases (e.g., esophageal atresia).

Complications of esophageal atresia

Esophageal atresia is a rare, congenital malformation with a high need for medical care. Due to the complexity of the disease and the individual anatomical and functional differences in the affected children, the clinical picture is extremely heterogeneous. Therefore, differentiated, continuous observation in both the outpatient and inpatient sectors is essential.

Even minor changes in the childʼs general condition can be an indication of serious complications and should therefore not be trivialized but always clarified by a doctor. Early diagnosis and intervention can prevent or mitigate serious courses. Well-informed and educated parents can serve as an important and competent resource in this regard.

The most common and relevant long-term complications include:

• Recurrent fistulas: A recurrence of the fistula between the trachea and esophagus can manifest as increased coughing, choking, failure to thrive, or recurrent respiratory infections.

• Stenoses (narrowing of the anastomosis): These often lead to swallowing difficulties, gagging, or food refusal and may require repeated dilation treatment.

• Gastroesophageal Reflux (GERD): Severe reflux is common in children with EA and can lead to inflammation, pain when eating, or food refusal. If left untreated, GERD can lead to reflux esophagitis, aspirations, or Barrettʼs esophagus in the long term.

• Dumping Syndrome: A rarer but relevant complication after gastric surgery. Symptoms can include rapid bowel movements after eating, restlessness, paleness, hypoglycemia, or circulatory problems. Early detection and dietary adjustments play a central role here.

Best practice example – how the problem at the interfaces can be solved

High-quality and well-coordinated outpatient care is essential for the long-term course of the disease.

In order to further professionalize the care of children, the pilot project of family liaison nursing was established at the Marien Hospital in Witten in cooperation with KEKS in November 2024.

The concept is based on the liaison nursing model, which is based on “Primary Nursing” implemented by Marie Manthey as early as the 1960s [27]. Family liaison nursing at Marien Hospital Witten represents a low-threshold offer in a counselling and supportive function for people affected by rare, congenital malformations and their families. Since the liaison nurse closely accompanies the patients and their parents during their hospital stay and is part of a multidisciplinary team, they are seen as an active contact person for the parents regarding the course of treatment. After the hospital stay, consistent follow-up care for those affected is essential for the further course of treatment. To ensure continuity of treatment, especially in follow-up care, the coordination of the various specialist areas, but also support systems, is important. This task is taken over by the family liaison nurse and thus serves as an interface coordinator for resident pediatricians.

The focus is therefore on holistic, long-term care for patients beyond the clinical setting. The pilot project is designed so that it can be expanded to other expert clinics. Supported by KEKS, the concept is to be established in other clinics in the next few years. The detailed description of the concept can be found here.

Opportunities for Support for Pediatric Practices

As already mentioned in the introduction to this text, care in an expert center is of central importance. This is based on the so-called indirect evidence, as has already been shown for comparable diseases in adult medicine. Since 2021, KEKS has been certifying clinics in Germany for the care of people with esophageal atresia and their relatives. The certification is based on the ERNICA (European Reference Network for rare inherited and congenital gastrointestinal malformations and diseases) consensus recommendations [28], [29] as well as other national and international recommendations [5], [30]. Accordingly, people with rare congenital malformations should be given access to clinics with special expertise [28], [29]. The principle of a second opinion is suitable for this, as it can increase patient safety during the course of the disease. KEKS supports the search for suitable contact persons. A list of the clinics certified by KEKS so far can be viewed on the KEKS website. The primary responsibility for adequate follow-up care lies with the institution where the surgical care took place or takes place. Accordingly, it must be demanded that the corresponding professional expertise and the resources necessary for all aspects of the disease are available. This also includes the provision of structured follow-up care plans and concrete recommendations for action for frequently occurring problems in the everyday lives of the affected families. Good care for these children requires close cooperation between all participating specialist disciplines. Clinics that want to guarantee or ensure high-quality follow-up care should be open and accessible for questions or consultations at all times. A significant part of this accessibility can be achieved through a family liaison nurse.

Summary

Children with rare malformations and their families need reliable, coordinated care–beyond the clinic. Family liaison nursing shows how individual support and professional coordination can provide security and close care gaps as a supplement to existing structures such as discharge and case management.

The role of the pediatrician as the first point of contact for parentsʼ concerns about their childʼs development after discharge from the clinic cannot be overestimated for the childʼs further recovery, therapy, and general care. KEKS is available to both pediatricians and families as a further source of support.

Conflict of Interest

The authors declare that they have no conflict of interest.

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Publication History

Article published online:
10 October 2025