Article: Symptomatic palliative care for children with neurodisability

Paediatric palliative care and neurodisability are two relatively new, evolving paediatric sub-specialties.  This UK article explores the unique interface through the three domains of complex symptom management, advanced care planning and end of life care.  It describe the practicalities involved in all three areas and highlight the importance of early referral and the process of "dual" or "parallel" planning.   It covers the specific management of the symptoms dystonia/abnormalities of muscle tone, seizures, pain, agitation, secretions, respiratory failure, and gut failure.

Bendle L & Laddie J (2019) Symptomatic palliative care for children with neurodisability.  Paediatrics and child health: 29:10 p 431 - 435

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Article: Long term outcomes of functional neurological disorder in children

Functional neurological disorders (FND) is a diagnostic term for the various ways individuals experience abnormalities of nervous system functioning.  This UK study aims to establish the incidence and long term outcomes for children and young adults.  124 individuals met the study criteria.  The most common presentations were seizures, sensory loss and motor symptoms.  The study found the incidence of FND is higher than previously recorded and can have long term implications.

Raper, J. 2019.  Long term outcomes of functional neurological disorder in children.  Archives of  Diseases in Childhood, 104, p1155 - 1160

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Article: Intranasal fentanyl for respiratory distress in children and adolescents with life-limiting conditions

This German study looked at the effectiveness of intranasal fentanyl for the treatment of acute attacks of respiratory distress (AARD). 16 children (from 0.5 - 18.6 years) with various life-limiting conditions were included in the study and a total of 70 AARDs were analysed.  The study concluded intranasal fentanyl may be a safe and effective treatment to use, however larger sample sizes and a control group is needed to validate the findings.

Pieper, L. 2018.. Article: Intranasal fentanyl for respiratory distress in children and adolescents with life-limiting conditions.  BMC Palliative Care.

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Article: Noisy upper respiratory tract secretions: pharmacological management

Written from an adult palliative care perspective, this short article reviews the practical management of noisy upper respiratory tract secretions.

Boland, J. & Boland, E. 2019. Noisy upper respiratory tract secretions: pharmacological management. BMJ Supportive & Palliative Care.  Online.

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Article: Top Ten Tips Palliative Care Clinicians Should Know About Caring for Children

This articles provides a review of the unique components of pediatric palliative care, including key roles within an interdisciplinary team, the complexities of symptom management in children with serious illness, and pointers for discussions with families regarding a patient's quality of life and goals of care.  Particularly useful for medical students and other healthcare professionals new to the specialty to get an overview of the key areas.

Jordan, M. et al. 2018.  Top Ten Tips Palliative Care Clinicians Should Know About Caring for Children.  Journal of Palliative Medicine, 21 (12) p 1783 - 1789

Article: Changing from continuous SC to transdermal clonidine to treat dystonia in a teenage boy with end-stage leucodystrophy

This case report discusses the problems encountered with dystonia in a teenage boy with end stage leucodystrophy  It records the successful use of prolonged continuous subcutaneous clonidine and the change to 3 x a week transdermal clonidine. 

McCluggage, H. L. 2018 Changing from continuous SC to transdermal clonidine to treat dystonia in a teenage boy with end-stage leucodystrophy.  BMJ Supportive & Palliative Care, 2018 (8) p 433 - 435.

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Article: Impact of a massage therapy intervention for pediatric palliative care patients and their family caregivers

This study is a US hospital looked at the effect of massage therapy on patient's symptom burden and medication use pattern, and for caregivers, the impact of massage therapy on distress.  A total of 135 10 minute bedtime massages were provided to children and their caregivers.  The FLACC scale was used, with over 80% of children scoring a lower FLACC rate after the massage.  The massage proved effective for all care givers.  The authors conclude massage therapy is a potentially meaningful intervention for pediatric patients with a noted impact on symptom burden, benefit to family caregivers and acceptance by nursing staff.

Weekly, T. et al. 2018. Impact of a massage therapy intervention for pediatric palliative care patients and their family caregivers.  Journal of Palliative Care epub.

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Article: Seizure management in children requiring palliative care: a review of current practice

Controlling seizures in children approaching death can be difficult, and there is limited evidence on best practice. This article, published last year compared current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine (APPM).  They reviewed case notes over a 10 year period and found a wide range of pharmacological approaches, often exceeding APPM dose recommendations.  Despite this, safe and effective seizure control was possible in all settings.

Harris, N. et al.  2017.  Seizure management in children requiring palliative care: a review of current practice.  BMJ Supportive & Palliative 2017 published online.

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Article: Achieving successful subcutaneous access in palliative patients

Subcutaneous administration of medications is a well-recognised route for delivering prescribed therapies, in particular analgesia for patients requiring palliative care. This article discusses how technological developments are resulting in subcutaneous access devices that are easy to insert and can meet the needs of a growing population, as well as complying with the latest guidelines on sharps safety. 

Gabriel, J. 2018. Achieving successful subcutaneous access in palliative care.  International Journal of Palliative Nursing, 24 (6) p 282 - 287.

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Article: Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care

This letter reports on a survey recently administered to investigate the current off-label prescribing of fentanyl for breakthrough pain in paediatric palliative care in the UK and to ascertain any barriers to use.  The survey was sent to 124 members of the Association of Paediatric Palliative  Medicine (APPM).  The response rate was 44 members (36%).  Respondents were mainly consultants and associate specialist grade clinicians who had worked for over 5 years in this field.  Less than half had prescribed buccal fentanyl and only 4 had prescribed intranasal fentanyl.  The article provides more details of prescribing practice and reasons for the low uptake.

Harrop, E. et al. 2018. Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care.  BMJ Supportive & Palliative Care, September 8 (3) p

New Book: Palliative care nursing at a glance

Although primarily a book for adult palliative care nursing, the book has chapters that can also be relevant for palliative care for young adults,  including symptom management, pain control, communication, advance care planning, ethical issues, and managing end of life care.

Ingleton, C. & Larkin, P J. 2015. Palliative care nursing at a glance.  Wiley Blackwell.

Contact the library  for a loan

Article: Pain reporting and analgesia management in 270 children with progressive neurologic, metabolic or chromosomally based conditions with impairment of the central nervous system

To date, this prospective study is the largest study exploring pain in children with nonmalignant life-limiting diseases. The findings showed that pain in children with progressive neurologic diseases was common, under-recognised and undertreated. Analgesia management in this vulnerable group currently lacks standard assessment tools, consensus treatment guidelines and prospective randomized controlled trials.

Friedrichsdorf, S. et al. 2017. Pain reporting and analgesia management in 270 children with progressive neurologic, metabolic or chromosomally based conditions with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study.   Journal of Pain Research, 2017.  Vol 10, p 1841 - 1851.

For a copy of the article please fill out the online request form

Article: "Total Pain" in children with severe neurological impairment

This article summarises the advances that have been made in the assessment and management of pain in children with severe neurological impairment.  It includes pain assessment tools and the authors own experiences working with infants, children and young people with palliative care needs in a UK palliative care service.

Warlow. T. & Hain, R. 2018.  "Total Pain" in children with severe neurological impairment.  Children. January 5 (1) online version.

For a copy of the article please fill out the online request form

Article: Fifteen minute consultation: Practical pain management in paediatric palliative care

This article provides two case scenarios: complex cancer-related pain and multimodal pain in progressive neurological illness.  It provides a summary of the cases, and then discusses initial steps, ongoing management, aspects to consider, routes and doses of medication, and non pharmacological measures.

Harrop, E. et al. 2017.   Fifteen minute consultation: Practical pain management in paediatric palliative care.  Archives of Disease in Children: Education & Practice, 102, p239-243.

Article: Update on symptom control - nausea and vomiting

Nausea and vomiting are common in people with life-limiting diseases and those nearing the end of life.  This article examines the mechanisms that lead to these symptoms and reviews the evidence for the efficacy of various classes of drugs in alleviating them.  Written from an adult palliative care perspective,

Ubogagu, E. 2017. Update on symptom control - nausea and vomiting, European Journal of Palliative Care,  24 (1) p 28 - 32,

To request a copy, click here fill in form and return to library.

[New Book] - A really practical handbook of children's palliative care

A very accessible book, aiming to provide practical solutions to common problems faced by health professionals caring for dying children.  The book's fifteen parts cover symptom management, practices for communicating bad news, helping families with emotional reactions, assisting children and their families with ethical and spiritual issues, and working with surviving family members as they grieve.

Amery, J. 2016.  A really practical handbook of children's palliative care: for doctors and nurses anywhere in the world.  Lulu.com

Click here to request a loan from the library

[Article] Fifteen minute consultation: approach to management of respiratory problems in children with neurodisability

Children with neuro-disability frequently have severe underlying physiological impairments and co-existent problems, like aspiration make these children vulnerable to respiratory difficulties.  The article covers patient assessment, management and the key learning points.

Kansra, S. & Ugonna. 2016. Fifteen minute consultation: approach to management of respiratory problems in children with neurodisability.  Archives of Disease in Childhood Education & Practice. 101 (5) p 226 - 231.
To request a copy, click here fill in form and return to library.

[Article] Paediatric pain assessment

Written from a US perspective, the article provides an overview of paediatric pain assessment, and includes a list of tools and important aspects to be considered when carrying out an assessment.

Stewart, S. 2016.  Pediatric pain management strategies.  CHiPPS E-Journal: Pain Management with Children, November, Issue 45  p 5 - 10
Available at http://www.nhpco.org/sites/default/files/public/ChiPPS/ChiPPS_e-journal_Issue-45.pdf

[Article] Paediatric pain management strategies

Written by a US Pediatric Clinical Pharmacist, the article reviews medication route considerations. timing of medication, and the WHO ladder.

Hunt, M. 2016.  Pediatric pain management strategies.  CHiPPS E-Journal: Pain Management with Children, November, Issue 45  p 10 - 14
Available at http://www.nhpco.org/sites/default/files/public/ChiPPS/ChiPPS_e-journal_Issue-45.pdf

[Article] Patient-specific opioid selection considerations in children

The article reviews the selection of the correct opioid to be used for pain management in children of all ages including non-opioid considerations

Hunt, M. 2016.  Patient-specific opioid selection considerations in children.  CHiPPS E-Journal: Pain Management with Children, November, Issue 45  p 14 - 18

Available at http://www.nhpco.org/sites/default/files/public/ChiPPS/ChiPPS_e-journal_Issue-45.pdf