España y su presencia en China (1870-1910) 24

PPC1 Prevalence of Life-Limiting Conditions in Paediatric Palliative Care

The Number of Children Requiring Palliative Care; Key Challenges and Using Data Appropriately 

Fraser L.1_{, Quinn C.} 2

1_{University of York, York, United Kingdom,} 2_{National University of} Galway, School of Nursing and Midwifery, Galway, Ireland Presenting author email address: [email protected]

This interactive session will have a short presentation on the prevalence data on the numbers of children and young people from the UK and Ireland with Life-limiting conditions and then a discussion session with the audience on how to interpret these data and use these for service delivery and planning.

Key challenges will also be discussed.

PPC2 Information and Planning in Children’s Palliative Care End of Life Decision Making in the Perinatal Period: A Population- Based Study in Fetuses, Neonates and Infants

Beernaert K.1_{, Dombrecht L.}1_{, Chambaere K.}1_{, Cools F.}2_{, Roets E.}3_,

Goossens L.3_{, Naulaers G.}4_{, Deliens L.}1_{, Cohen J.}1

1_{End-Of-Life Care Research Group, Ghent University & Vrije Universiteit} Brussel (VUB), Gent, Belgium, 2_{Universitair Ziekenhuis Brussel, Brussels,} Belgium, 3_{Ghent University Hospital, Gent, Belgium,} 4_{Leuven University} Hospital, Leuven, Belgium

Despite improvements in prenatal diagnostic techniques and medical and technical interventions for critically ill neonates, about 8.7 per thou- sand children still die during the perinatal period in Flanders. This death is frequently preceded by difficult decisions such as termination of preg- nancy, withholding or withdrawal of life-sustaining treatment or admin- istering drugs or medical interventions; with or without the intention to hasten death. Population-based studies of incidence and characteristics of such end of life decisions (ELDs) in the perinatal period are rare. Therefore, we conducted a population mortality follow-back survey in Flanders for all stillbirths from 22 weeks of gestation onwards occurring between 1 January and 31 December 2017 and for all deaths of infants under the age of 1 year between 1 October 2016 and 31 December 31 2017. For each death case a postal questionnaire, including questions on ELDs was sent to the attending physician. Anonymity of the child, par- ents and physician is ensured by a rigorous mailing procedure involving a lawyer as trusted third party. We had a high response rate of 71% (194/275) and 82% (245/297) for neonates and infants. We will present the incidence of termination of pregnancies and the incidence of with- holding or withdrawal of life-sustaining treatment with the explicit, with co-intention and without intention of hastening death and the adminis- tering of drugs with the explicit, with co-intention and without intention of hastening death. We will also give more information and discussion about the ELD process and the relation with clinical and patients’ characteristics.

PPC2 Information and Planning in Children’s Palliative Care

Information and Decisions Regarding Medical Treatment for Severely Ill Children with Spinal Muscular Atrophy

Kreicbergs U.1,2_{, Beernaert K.}3_{, Sejersen T.}4_{, Werlauff U.}5_{, Rakbek J.}5_,

Jeppesen J.5_{, Hjorth E.}1_{, Lövgren M.}1,6

1_{Ersta Sköndal Bräcke University College, Stockholm, Sweden,} 2_{Karolinska Institutet, Karolinska University Hospital, Astrid Lindgren} Children’s Hospital, Childhood Cancer Research Unit, Stockholm, Sweden, 3_{Ghent University, Ghent, Belgium,} 4_{Karolinska Institutet,} Stockholm, Sweden, 5_{RehabiliteringsCenter for Muskelsvind,} Copenhagen, Denmark, 6_{Karolinska Institutet, Karolinska University} Hospital, Astrid Lindgren Children’s Hospital, Childhood Cancer Research Unit, Stockholm, Sweden

Parents receiving information that their child has a life limiting illness is devastating. Communication in pediatrics has been studied extensively, predominantly in oncology. This has been found to be crucial for families not only in understanding the seriousness of the illness but also for com- pliance to treatment and coping with bereavement. Notably, there is a difference between families of a child with cancer compared to a child with severe SMA. Thus, in this genetic neuromuscular condition, which occurs in 1 of 10 000 live births, there is no curative treatment. Children with SMA are commonly subgrouped in three categories based on the

severity of dysfunction. Children with SMA 1 have a short life expec- tancy, which, however, may be extended by respiratory support. The decision about this treatment option rests upon the care givers confer- ring with the parents. Recently, a new therapeutic drug has become available, which may mitigate the progression of the disease and, hence, improve the prognosis, even for children with SMA 1. Lifelong treatment poses a difficult decision for the parents, which should be grounded on solid information conveyed prudently.

We explored communication, knowledge and decisions in the care of children with severe SMA. Interviews with parents and health care staff were conducted to develop a questionnaire for parents used in two nation-wide studies, Sweden and Denmark. A total of 64 children were identified, 59 were found eligible and 57 were represented by at least one parent. The participation rate was (n=95, 84%), with an almost equal distribution of mothers and fathers. No parents reported that health- care professionals made treatment decisions without informing them beforehand. Yet, not all parents received information to fully understand the condition, the treatment options and consequences for the life of their child. Thus, there is a need of improved strategy in supporting and communicating with the families.

PPC2 Information and Planning in Children’s Palliative Care Advance Care Planning in Pediatric Palliative Care - The View of Parents and Health Care Professionals

Führer M., Knochel K., Zaimovic V., Reimann D., Lotz J., Borasio G.D., Hein K.

University Children’s Hospital Munich, Center for Pediatric Palliative Care, Munich, Germany Presenting author email address: monika. [email protected]

“We knew what will happen at the end - that we will not kill him with the medication, but ease his way. And the discussions have reassured me”,

Despite compelling evidence for the effectiveness of advance care planning in adults, there is still a debate whether this concept can be adapted to meet the needs of children with a life-limiting disease and their parents as well as the necessities of health care professionals (HCPs).

We conducted a series of studies aiming to explore the needs and per- ceptions of parents and HCPs about pediatric advance care planning (pACP), to identify the main challenges during pACP discussions, and to describe core elements for a successful pACP process. Our final goal is to develop a comprehensive pACP guideline. To this end, we used a partici- patory approach involving bereaved parents and HCPs from all profes- sions concerned.

Main results were:

1) Parents prefer that physicians lead the pACP conversations. They should be familiar with the child’s medical condition in order to provide them with the necessary medical information. HCPs involved in pACP should know the family and guide them during the decision-making process.

2) Parents want to prepare for crisis situations, however, advance directives (ADs) are of minor importance to them. HCPs would prefer clear directions for future medical treatment and receiv- ing ADs signed by the parents.

3) HCPs perceive a need for guidelines and professional education in pACP and advocate for a systematic implementation of pACP in health care systems.

4) Both parents and HCPs prefer an early beginning of pACP in the course of the disease, but they also mention that parents must be ready for it and that the correct timing of discussions is cru- cial for a successful pACP.

"These conversations are also very difficult. But in the end, I have realized that this has been effective. Not to avoid this. […] But to repeatedly work a little in this direction. But then, you need really sensitive people.”

PPC3 Symptom Management in Palliative Care

Evidence-Based Prescribing in Paediatric Palliative Medicine Jassal S.

Rainbows Childrens Hospice, Loughborough, United Kingdom Presenting author email address: [email protected]

Aims: To consider why evidence based prescribing is so important in

PPM.

Methods: We will look at the history of prescribing in PPM and the pit-

falls of the past particular with drugs and routes such as morphine, midazolam and methadone. We will look at the structure used by the APPM formulary to review evidence for drugs in the APPM National Formulary and how the work continue to evolve. Finally we will consider new drugs and pitfalls in prescribing in PPC.

Results: Prescribing in the past was extrapolation from adult medication

and guess work and this has led to many errors. We now use very robust systems to review evidence. Future research is limited by small numbers and the special groups we work with.

Conclusion: We have finally understood the importance of evidence

based medicine and the future requires collaborative working nationally and internationally.

PPC3 Symptom Management in Palliative Care We Need To Talk About Cannabis

McCulloch R.

Great Ormond Street Hospital Institute of Child Health, The Louis Dundas Centre for Paediatric Palliative Care, London, United Kingdom We need to talk about the cannabis conundrum in current paediatric practice. There is considerable confusion amongst the public, health care professionals and policy makers regarding the various forms of can- nabis oils, their use and legality, in addition to the related risks and safe- guarding issues associated with administration in children.

Current international discussion focuses on 2 chemicals (cannabinoids) found within cannabis, delta-9-tetrahydrocannabinoid (THC) and Cannabidiol (CBD). Whilst the debate on the use and effectiveness of cannabis rages on, a blurring of lines has occurred between unregulated ‘botanoceutical’ cannabis oils and ‘pharmaceutical’ grade cannabinoid use.

Clinical evidence supporting the use of cannabis derived products in chil- dren for medicinal use is very limited, there are still no large scale robust well designed randomised controlled studies to determine efficacy. However, a wealth of anecdotal reports claiming that cannabis is able to treat numerous conditions as well as help reduce or prevent a variety of adverse effects, abound on media platforms, presenting enough of a compelling argument for parents (patients) to warrant a trial of unregu- lated ‘botanoceutical’ cannabis products for their children. This is occur- ring with increasing frequency in children with life limiting and life threatening conditions.

This presentation will open up the discussion, provide an overview of the status quo regarding current research and evidence and suggest an approach to management in paediatric palliative care patients.

PPC3 Symptom Management in Palliative Care

Assessment and Management of Neuroirritability in Pediatric Palliative Care Patients with Severe Psychomotor Impairment (SPMI) Zernikow B.

Witten/Herdecke University, Faculty of Health, School of Medicine, Chair Children’s Pain Therapy and Paediatric Palliative Care, Datteln, Germany

Aims: Delegates will learn about children with SPMI in pediatric pallia-

tive care. The most frequent and important symptoms, neuroirritability and sleep disorders, will be the focus.

Methods: Based on real case reports and considering a bio-psycho-

social-spiritual approach, the existing scientific evidence will be presented

Results: Delegates will gain an understanding of diagnosis and assess-

ment of neuroirritability, including use of validated tools for sleep assessment, and a structured approach for treatment of children with life limiting conditions and SPMI.

Conclusion: Although often a matter of trial-and-error, assessment and

treatment of children with SPMI suffering neuroirritability can follow a rational approach.

PPC4 Contemporary Issues in Children’s Palliative Care Aprepitant: Our New Friend for an Old Adversary? Patel B.1_{, Bayliss J.}2_{, Stephenson A.}2_{, Bluebond-Langner M.}2,3

1_{Louis Dundas Centre for Paediatric Palliative Care / Pharmacy, Great} Ormond Street Hospital NHS Foundation Trust, London, United Kingdom, 2_{Louis Dundas Centre for Paediatric Palliative Care, Great} Ormond Street Hospital NHS Foundation Trust, London, United Kingdom, 3_{Faculty of Population Health Sciences, Louis Dundas Centre} for Paediatric Palliative Care,University College London, Institute of Child Health, London, United Kingdom

Background: Nausea and vomiting is a common symptom in children

through their end of life journey. Uncontrolled nausea and vomiting places a huge psychological and emotional burden on families and chil- dren as well as the physical burden, reducing quality of life for the child and family. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. Aprepitant’s use in palliative care, and refractory nausea and vomiting, has been lim- ited, due to limited experience or evidence of long-term use. However, emerging evidence suggests that long-term (LT) use is not only safe, but also effective in patients with nausea and vomiting refractory to multiple lines of anti-emetic therapy.

Aim: Evaluate the safety and efficacy of LT aprepitant administration for

nausea and vomiting, unresponsive to at least 2 previous lines of stand- ard anti-emetic therapy in children.

Method: We conducted a single centre retrospective chart review of

children, given daily aprepitant for nausea and vomiting, unresponsive to at least 2 prior lines of anti-emetic therapy. Objective responses from parents, impact of nausea on mobility and on feeding, were used as proxy efficacy markers. Time to effect, duration of effect and toxicity was also evaluated.

Results: 7 children received LT aprepitant and showed resolution of nau-

sea and vomiting, increased ability to mobilise and feed tolerance, within 24 hours of starting aprepitant. Emetic control was maintained with oral medication until end of life in 6/7 children, maintaining home as place of care and death in 85% of children. No adverse events were noted.

Conclusion: This review is the first report of aprepitant use in this man-

ner in the paediatric palliative care setting and represents the largest case review published within a paediatric cohort. Our review suggests a role for aprepitant in management of refractory nausea and vomiting, prior to use of parenteral therapy, demonstrating safety and efficacy.

PPC4 Contemporary Issues in Children’s Palliative Care

Exploration of the Term ‘Quality of Life’ in Consultations of Children with a High Risk Brain Tumour over the Course of the Illness Beecham E.1,2_{, Langner R.}2_{, Hargrave D.}3_{, Bluebond-Langner M.}2,4

1_{Marie Curie Palliative Care Research Department, Department of} Psychiatry, University College London, London, United Kingdom, 2_Louis Dundas Centre for Children’s Palliative Care, Institute of Child Health, University College London, London, United Kingdom, 3_Paediatric Oncology Unit, Great Ormond Street Hospital, London, United Kingdom, 4_{The State University of New Jersey, Rutgers University, New} Brunswick, United States

Background: Discussions of quality of life (QoL) are being increasingly

advocated between healthcare professionals (HCPs), parents, and chil- dren and young people (CYP) with serious illness, even when chance of cure is good. There is no current consensus on an accepted concept of QoL yet it is used in consultations about a patient’s care and treatment. It is therefore important to understand how each stakeholder under- stands the term QoL.

Aims:

1) To explore if QoL emerges as a topic in consultations between CYPs with high risk brain tumours (HRBTs), parents and HCPs. 2) To explore how QoL is conceptualised during the interaction in

these consultations.

Methods: Data is taken from a 20 month longitudinal, prospective, eth-

nographic, participant-observation study following 24 families from diagnosis to death in all interactions among CYP with HRBTs, parents and HCPs. We present results from the first phase of analysis focusing on consultations with Neuro-Oncology. Data was analysed using both inductive thematic analysis and deductive coding.

Results: The term QoL arose 32 times in 14/24 cases (58%). Occurrences of

the term QoL were overwhelmingly raised by HCPs compared to parents and CYP. When exploring emerging conceptions of QoL the three stake- holders had different perspectives on what quality looked like to them and their priorities. For parents the focus in the consultation was on length of life and time left, HCPs focused on physical status of the patient and avoid- ing side effects and the CYP’s QoL related concerns were relational.

Conclusion / Discussion: A lack of alignment of views and priorities was

found among the CYP, parent and HCP views of QoL. Given that their conceptions of QoL may be different, it is important to elicit what QoL means to each of them at each turning point in the illness trajectory.

Funding: Marie Curie Research Grants Scheme, grant MCCC-FCO-16-U

and Health Foundation.

PPC4 Contemporary Issues in Children’s Palliative Care Adolescent Palliative Care in Uganda: Assessing and Addressing Needs

Merriman R.1_{, Doherty D.}2_{, Mwebesa E.}3

1_{King’s College London, London, United Kingdom,} 2_{University College} Dublin, Dublin, Ireland, 3_{Hospice Africa Uganda, Kampala, Uganda}

Background: It is recognised that adolescent palliative care patients, fac-

ing multiple periods of transition, have specific psychological and clinical needs. For patients in developing countries, further challenges arise. Due to differences in demographics, culture and healthcare provision, better understanding is required to ensure age-appropriate, holistic care.

Aims: To identify and explore the needs of adolescent palliative care

patients in a resource limited setting. To highlight the barriers to care, and consider practical solutions.

Methods: With ethical approval, a qualitative study was conducted in

three community-based Hospice sites across Uganda. Data was collected using semi-structured interviews with current patients aged 13-19 (n=21), and multidisciplinary team focus-groups (n=2).

Results: Patients highlighted three main areas of concern:

1. Uncertainty regarding diagnosis, prognosis and treatment side effects.

2. The impact of illness on education.

3. Self-image, being ‘different’, and the effect this has on relationships.

Multiple barriers were identified. Many patients had high, sometimes unrealistic, expectations of Hospice services, with most suggesting financial support as a way to meet their needs. Information sharing was

often limited. Families, wanting to ‘protect’ their child, would conceal their diagnosis. Patients, too, were often reluctant to talk openly. Additionally, a lack of monitoring, integrated care and communication between health services meant that key information was not readily available when required. In general, staff felt unequipped to deal with sensitive issues specific to their teenage patients. This was largely due to gaps in training and service provision. As a result, these important aspects were often overlooked.

Conclusion: Palliative care needs of adolescent patients in resource lim-

ited settings are complex and multifaceted. A proactive, sensitive, and multidisciplinary approach to care is essential.

This study received no funding.

PPC4 Contemporary Issues in Children’s Palliative Care

Clonidine for Intractable Irritability in Children with Severe Neurologi- cal Impairment - A Case Series

Ní Laoire Á.1_{, Twomey M.}1_{, O’ Reilly M.}1_{, Colleran M.}2_{, Devins M.}3

1_{St. Luke’s Radiation Oncology Centre, Dublin, Ireland,} 2_{St. Brigid’s} Hospice, Kildare, Ireland, 3_{Our Lady’s Children’s Hospital, Dublin,} Ireland

Background: Irritability in children with severe neurological impairment

(SNI) is a complex and distressing symptom which is challenging to treat. Clonidine is a centrally acting α2 adrenergic receptor agonist with a potential unique role to reduce irritability by treating dystonia, dysauto- nomia and nociceptive pain. Despite this, minimal research exists on its use in this setting.