A prospective study on the characteristics and subjects of pediatric palliative care case management provided by a hospital based palliative care team

Subject of study were all members of the PPCT, including the specialized nurses, the child life specialists, the psychologist, the social worker and the chaplain. The PPCT is located in a University children’s hospital in the capital of the Netherlands, and has the referral of patients below 19 years of age with any type of life shortening disease. The specialized nurses act as liaison case managers to organize PPC for the patient. The case managers coordinate the logistics of care delivered from all involved professionals. The PPCT has weekly multidisciplinary conferences to discuss patients. Two pediatricians and two pediatric oncologists are connected to the team, and join the weekly multidisciplinary conferences. Furthermore, the PPCT supports the first line professionals, patients and their families. The hospital based PPCT bridges the gap between hospital and home with contacts between parents and (primary) professionals. Contacts can be undertaken by telephone, mail as well as personal visits at home or during hospitalizations.

The primary physician remains responsible for the patient’s medical treatment and will introduce the PPCT to all patients with a life shortening disease, following any category as set by the WHO [1], early in the palliative phase of disease. The support is continuous during the course of illness and also provides bereavement support after the patient’s death. The PPCT’s support does not replace care, but is offered to navigate the patient through the complex care. The members of the PPCT registered data on their contacts with patients with any type of life shortening disease and their parents within their care between August 21^st 2013 and October 21^st 2013, and between April 8^th2014 and May 8^th 2014. The second period was selected to be able to measure the need of support during a period with 5 extra holidays. Patient data including age, gender, disease characteristics, and number, duration and reasons for hospitalizations, were retrieved from the medical charts. Since the specialized nurses are available on every day of the week, for 24 h a day, we asked the members to specify, during what shift the contact took place.

Any contact of a PPCT member with a patient or their parent - either by telephone, mail, visit at home or in the hospital - was subject for study. Since almost all contacts were with the parents of patients, in this report we will address all contacts as parent contacts. For data collection of this study all PPCT members prospectively completed a structured questionnaire on characteristics and content of each contact. Team members were prepared to work in a research setting and gave oral consent for participation. Furthermore, professionals were very specifically instructed on all issues of the form to tick boxes in the questionnaire addressing the following subjects: their discipline (specialized nurse, child life specialist, psychologist, chaplain, social worker), the initiation of the contact (planned = pre-arranged by the PPCT, parental = initiated by parents, and pro-active = unplanned pro-actively initiated contact by the PPCT), the time-shift of the contacts (office hours Monday through Friday between 8 am and 6 pm, evening/nights on weekdays, during weekends or national holidays), and the topics discussed during the contact from a list of 30 possible topics. One or more topics could be chosen per contact. For data-analysis these topics were categorized in 6 groups: physical, psychosocial, patient support (which includes patient support groups, patient counseling, and preparing/supporting medical procedures), school and daycare, socio-economic, and spare time, as is shown in Table 1. In the first version of the questionnaire, the identification of the discipline was printed too close to the paper margin, resulting in missing information. This aspect of the form was improved in the second study period and the importance of identification was explained to the team members.

Routinely a time registry of case management activities on each single patient was performed by PPCT members daily as part of their normal job, following a preset format to classify activities. Activities were divided in “time spent on direct contact with parents and/or patients”, and “other patient related activities”, which covered together the total time spent on individual case management. “Time spent on direct contact with parents and/or patients” included: intake interview, support at home and in the hospital, email and/or telephone contact, and aftercare. Time spent on “other patient related activities” included: consults with other disciplines, school or other involved professionals, multi-disciplinary conferences concerning a specific patient, and all supportive activities such as arranging equipment and medical aids, administrative activities and travelling time. Time spent on activities beyond individual care, but involving more than one patient, or team activities, such as the weekly multidisciplinary meetings, teaching and education, coordination and team support, were not included in this registration.

The Academic Medical Centre’s research ethics committee confirmed that the Dutch Medical Research Involving Human Subjects Act does not apply to the current study.

Since the patient cohorts, as well as the structure of the team were not substantially different during the two study periods, the results from both study periods were analyzed together as one study period of 89 days. We used descriptive statistics to present the majority of our results, such as number of contacts and time spent on contacts. Differences between patients with MD and NMD in intensity of support, number of contacts, initiation of contacts and time shift of contacts throughout the day, were assessed with a Kruskal Wallis test.

The distribution of topics was assessed for differences between patients with MD and NMD, different disciplines, time-shift of contacts, and different initiation of contacts. For each analysis of addressed topics an overall 2-tailed chi-square test was performed, and in case of significance, a chi-square was performed for each variable individually. For the variable difference in disciplines, those contacts without identification of the discipline were excluded from the analysis.

Although the multidisciplinary approach has been described in both adult and pediatric literature on palliative case management, there is no consensus on which disciplines should be present in the team. [2, 3, 5‐7, 9, 10, 13] In our cohort the specialized nurse is the first person answering the phone and addressed for all different subjects, although significantly less often consulted on psychosocial issues, patient support issues and issues on spare time, indicating the need for psychosocial disciplines, which is in accordance with empowerment as felt appropriate for earlier training programs in the USA [18].

Spirituality is important in PPC, for patients as well as for parents [18‐20] although, during our study period, the chaplain did not register any contacts. In multiple U.S. PPC programs, however, chaplains fulfill an active role in patient and family support, as well as in team support and education [21, 22].

Reports describing the involvement of chaplains in Dutch PPCTs are lacking [23].

Fewer chaplain contacts for Dutch patients could result from a different degree of families practicing a religion and/or that families preferably address their own minister or priest for religious support, which outweighs the contact with a chaplain from the hospital. Also, it might imply that other disciplines fulfill the need for spiritual support diminishing the need for the chaplain as an additional caregiver. The PPCT is aware of the availability of the chaplain since she is always present during the weekly meetings and works regularly on the different pediatric wards, despite being contracted for the PPCT for only 2 h a week. Future studies on the role of the chaplain regarding religion as well as spiritual care, team support and education are needed.

Our PPCT offers 24-hour availability, like some other PPCTs [3, 6, 7, 9, 10]. However there is no consensus on the need for 24-hour availability [15]. Our results, show that the majority of contacts and time spent on case management is done between 8 am and 9 pm. Moreover, during the out of office hours only 6 telephone contacts were initiated by the parents for (semi) acute questions. The absence of requests for care during the late evenings and nights could be explained by the anticipating approach of the PPCT, ensuring that all needs are accounted for during daytime. Secondly the reliability of an adequate first line system in our country, including specialized pediatric home care, and easy access to tertiary care, are factors that might contribute to the low amount of consultations of the PPCT on duty. Strong first line support for PPC was also described in the UK West Midlands, although more collaboration with the medical specialist was preferred, while in the USA a quite similar supporting program Footprints bridges the gap between hospital and home [5, 24]. On the contrary in more rural infrastructures, for instance Australia, the amount of night shift calls for children with cancer reached up to 10 % [25]. In our Dutch health care system, a full 24-hour availability of PPC case management seems unnecessary and availability between 8 am and 9 pm would be sufficient. However, parents may still feel greatly supported knowing that a team familiar with the situation of their child, is available during the evening and nights to guarantee continuous care. Future research should define the need and criteria for parents of availability of an adequate support system covering the needs between 9 pm and 8 am.

About 25 % of the contacts are unplanned pro-actively initiated by the PPCT, and another 25 % of the contacts are initiated by parents (Fig. 1c). The majority of these unplanned contacts are with the specialized nurses (90 %). Less unplanned care is seen for the psychosocial disciplines, with 8 % pro-active contacts and 12 % initiated by parents, while 39 % of planned contacts are performed by these disciplines. This implies that the specialized nurses should be flexible and full-time available, to provide adequate response for the frequent unplanned contacts. The fact that parents initiated 25 % of all contacts, underlines the easy accessibility of the PPCT and indicates that parents feel confident and familiar enough with the PPCT to approach them.

Physical and psychosocial issues are discussed most frequently (23 and 38 % of all discussed topics respectively), with no difference between patients with MD and NMD.

Fifteen percent of the discussed topics covered socio-economic issues, which were significantly more often initiated by parents, and specifically, more by parents of children with NMD compared to MD (80/438 vs 20/234 p = 0.001). Why parents of NMD patients need more socio-economic information, could be explained by the more chronic course of disease, and the complex care they receive however there is no research supporting this assumption. More research on the differences in the needs and the appropriate palliative care for patients with MD and NMD is warranted. A more pro-active approach on socio-economic topics seems warranted in PPC management, which is in accordance with the information of Lindley et al. that the burden of costs of severely ill children has considerable impact on the family’s finances [25‐28].

To our knowledge, this is the first description of the characteristics and content of case management in pediatric palliative care as provided by a multidisciplinary hospital-based PPCT. Focus was specifically on the discipline, the time-shift of contacts, initiation of contacts, and the topics discussed with parents. Since our PPCT supports children with any type of life shortening disease in care of our University Children’s hospital, insight is gained in differences in the needs for patients with MD and NMD. This knowledge provides opportunity to tune PPC with respect to the type of disease.

The completeness of response rate of questionnaires was checked via the routine administrative registration by the PPCT. From the 526 activities we received 455 completed questionnaires, indicating a response rate of at least 87 %. Since subsequent activities, such as telephone contact followed by e-mail contact, were registered as two contacts in the time registry, but were accompanied with one questionnaire, the actual response rate could in fact be even higher.

Due to an inadequate lay out of the form in 18 % of the questionnaires identification of the discipline was missing. However, 373 fully completed questionnaires describing 544 addressed topics were still available for analysis of the contacts per discipline.

In this study we did not address the appreciation of certain aspects of case management for patients, parents and the staff. This limits the conclusions we can draw from this study. For example, with our data, we might assume that integration of a chaplain may not be necessary since no consultation was performed. However, information on the contribution of the chaplain for staff support and education is needed before changes in the composition of the PPCT can be made. The many aspects of case management beyond individual care, such as the weekly multidisciplinary meetings, teaching and education, work meetings, coordination and team support were not the subject of this study [15]. It is estimated that around 60 % of the contracted time of case managers is spent on such activities and on time on duty, which content deserves further research in pediatric palliative care programs.

Also, for the suggestion that availability of the team from 8 am to 9 pm might be sufficient in the Dutch system with a strong primary health care, further research is needed to explore the value of 24-hour availability for parents.

In this study we did not look at patients’ individual support over the course of disease, but the full cohorts support during a set period. This may have biased the results, limiting the conclusions that can be drawn about the need of certain aspects of support. We do estimate that right after introduction of the PPCT and in the last days before a patient’s death, support may need to be more intensive, with the need of evening- and night- support, than in a stable phase of disease. Moreover, the kind of support needed, may be different during different phases of disease. Finally, the performance of care by our PPCT members might not be completely generalizable to other countries. Performance of PPC is highly dependent on the national and governmental organization of other components of care for children in a palliative setting, including aspects of home care, medical insurance coverage, geographical differences, and other factors such as religious beliefs, and family traditions. [10, 19, 29, 30].