Background In 2016, NICE published a guideline on ‘End of life care for infants, children and young people with life-limiting conditions: planning and management’.1 These guidelines recommended that pharmacists should be embedded in every paediatric palliative care team.
Aim To identify the roles of pharmacy teams in paediatric palliative (PP) care and examine the effectiveness of their services as perceived by PP doctors and nurses. To compare 2020 survey results with a study conducted in 2014 by Khan et al,2 to assess whether any changes could be observed.
Method This was a repeat of the study conducted in 2014 by Khan et al. A SurveyMonkey link was emailed to members of the APPM (Association for Paediatric Palliative Medicine) and NPPG (Neonatal and Paediatric Pharmacists Group) as well as to community pharmacies working closely with local children’s hospices in London and South East England. The questions were identical to the ones used in 2014. The data was analysed using Microsoft Excel.
Results The number of respondents totalled 107 (Response rate: 19%).
The respondents consisted of 84 individuals who were pharmacists or pharmacy technicians, and the remaining 23 were non-pharmacy staff such as doctors or nurses.
The majority of the pharmacy team reviewed palliative care patients on a monthly basis, and this trend had increased since 2014. Overall, an increase in patient contact was observed. The clinical involvement of the pharmacy team in PP care had increased, especially in medicines optimisation and prescribing. Since 2014, the number of pharmacists prescribing for children with palliative care needs appeared to have doubled. Other roles where pharmacy involvement appeared to have increased included advising on storage of medicines, investigating medication errors and formulary development.
Conducting research/audits, writing guidelines and financial reports were not popular tasks. In 2020, only 25% of the pharmacy team were involved with writing patient information leaflets for children with palliative care needs.
Lack of staffing, time and funding were the most frequently reported impediments to the pharmacy team taking on more clinical roles.
In 2014 and 2020, the British National Formulary for Children (BNF-C) was the most popular reference source routinely used by all staff groups. The Palliative Care Formulary, syringe driver compatibility charts and Handbook of Drug Administration via Enteral Feeding Tubes were also popular references amongst the pharmacy team. Doctors and nurses utilised the Alder Hey Book of Children’s Doses and the APPM Master Formulary more than pharmacy staff.
In 2020, doctors and nurses gave a median of 10/10 regarding their satisfaction of the pharmacy team’s contributions. The minimum score given was 6. Khan’s study1 reported a median rating of 9, but the difference observed was not considered to be statistically significant (p value >0.05).
Conclusions This study inferred that the involvement of the pharmacy team in paediatric palliative care has increased since 2014. More of the pharmacy team are handling clinical issues and the paediatric palliative healthcare team would like this growth to continue. The increase in prescribing by pharmacists was an interesting finding and it would be well-worth observing how this trend progresses. Consistent with Khan’s observations in 2014, non-pharmacy staff highly valued the pharmacy team’s contributions.
NICE guidelines. NG 61:2016. End of life care for infants, children and young people with life-limiting conditions: planning and management. NICE 2020.
Khan J, Gaze S, Tomlin S. The role of the pharmacist in paediatric palliative care. Archives of Disease in Childhood 2016;101(9):e2. doi:10.1136/archdischild-2016-311535.22
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