In Germany, approximately 23,000 children and adolescents [
1] and 87,460 adults [
2] are suffering from life-limiting conditions. Both adult and pediatric patients receiving palliative care can be referred to the specialized outpatient palliative care (SOPC) program. SOPC is provided by an interprofessional team (physicians, palliative care nurses, psychologists, social workers) in the patient’s family environment and includes palliative medical and nursing care, a 24/7 on-call service, psychosocial support and coordination of care in cooperation with local health care providers (family physicians/pediatricians) [
2]. SOPC was introduced in 2007 to alleviate suffering and enhance quality of life in patients and their relatives, e.g. by avoiding hospitalization [
2]. Requirements and reimbursement for SOPC are subject to a specific rule of procedure determined by the Federal Joint Committee (G-BA), the highest decision-making body of the joint self-government of physicians, dentists, hospitals and health insurance funds in Germany [
3]. The rule of procedure regulating the delivery of SOPC apply to both adult and pediatric patients in palliative care. However, there are a number of significant differences between the two groups of patients. While the majority of adult palliative care patients suffer from oncologic diseases, most pediatric patients cared for by SOPC teams have congenital diseases [
4]. Most of these diseases are complex, rare and often associated with cognitive disabilities. In addition, the wide range of ages and developmental stages of the patients treated under the umbrella of SOPC for pediatric patients are a challenge [
5]. SOPC for adults typically commences towards the end of the disease course and close to death [
4]. The course of disease in children is often characterized by recurrent crises interspersed by recoveries that render further SOPC unnecessary until the next crisis occurs. Thus, pediatric SOPC requires a more flexible approach, e.g. by adapting intensity of care depending on the changing needs of the patient [
4]. In palliative care in general, the involvement of the family plays an important role. While the whole family is affected when an adult family member is diagnosed with a life-limiting condition, their involvement and suffering will be greater when a child’s life is at stake [
6]. As the responsible caregivers, parents are the main contact persons for pediatric SOPC teams [
7], especially for young children and children unable to communicate verbally. A 2010 study showed that legal and financial regulations in Germany do not sufficiently take into account the needs of pediatric patients receiving palliative care [
8]. This problem is not confined to Germany. Although in 2007 the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate palliative care to pediatric patients [
9,
10], international studies also highlighted deficits. These particularly concern the delivery of family-centered care [
11‐
13] that adequately addresses siblings’ needs [
14], and provides psychosocial support and follow-up care for families [
15,
16].
Besides these research questions, another ELSAH work package (WP I) will focus on defining the term ‘quality of care’ within the context of SOPC, and defining and evaluating an instrument for measuring quality of care in adult patients receiving SOPC. The Department of General Practice and Family Medicine of Philipps-University of Marburg, Germany, will be responsible for WP I, and the study protocol will be published separately. This paper presents the study protocol for a needs assessment for pediatric patients receiving SOPC (WP II).