Clinical Research

Helen & Douglas House has been involved in a number of research projects over our 40+ year history.

Helen & Douglas House has been involved in a number of research projects over our 40+ year history. These have focused on understanding and improving patient and family experience of receiving care, including pain management, support for children with feeding tubes, and spiritual care needs. We believe that our patients have an equal right to care based on the experience of their own peers. This is likely to be safer and to better meet their individual needs.

Healthcare Professionals’ Experiences of the Barriers and Facilitators to Pediatric Pain Management in the Community at End-of-Life: A Qualitative Interview Study.

Inadequate pain management in community pediatric palliative care is common. Evidence to inform improved pain management in this population is limited. The aim of the study was to explore the barriers and facilitators to pediatric community-based pain management for infants, children and young people at end-of-life as perceived by healthcare professionals.

Diamorphine pharmacokinetics and conversion factor estimates for intranasal diamorphine in paediatric breathrough pain: systematic review

Intranasal diamorphine is a potential treatment for breakthrough pain but few paediatric data are available to assist dose estimation. The aim of the review was to determine an intranasal diamorphine dose in children through an understanding of pharmacokinetics.

A mixed-methods systematic review and meta-analysis of barriers and fascilitators to paediatric symptom management at end of life

Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. The aim of the review was to investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life.

A protocol for a systematic review and meta-analysis to identify measures of breakthrough pain and evaluate their psychometric properties

Breakthrough pain is common in children and adults with cancer and other conditions, including those approaching end-of-life, although it is often poorly managed, possibly partly due to a lack of validated assessment tools. This review aims to (1) identify all available instruments measuring breakthrough pain in infants, children, adolescents or adults and (2) critically appraise, compare and summarise the quality of the psychometric properties of the identified instruments using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria.

Healthcare professionals’ views of the use of oral morphine and transmucosal diamorphine in the management of paediatric breakthrough pain and the feasibility of a randomised controlled trial: A focus group study (DIPPER)

Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. The aim of this study was to explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial.

Oral morphine versus transmucosal diamorphone for breakthrough pain in children: methods and outcomes: UK (DIPPER study) consensus

No randomised controlled trials have been conducted for breakthrough pain in paediatric palliative care and there are currently no standardised outcome measures. The DIPPER study aims to establish the feasibility of conducting a prospective randomised controlled trial comparing oral and transmucosal administration of opioids for breakthrough pain. The aim of the current study was to achieve consensus on design aspects for a small-scale prospective study to inform a future randomised controlled trial of oral morphine, the current first-line treatment, versus transmucosal diamorphine.

Transmucosal drug administration as an alternative route in palliative and end-of-life care during the COVID-19 pandemic

The Coronavirus disease 2019 (COVID-19) pandemic has led to a surge in need for alternative routes of administration of drugs for end of life and palliative care, particularly in community settings. Transmucosal routes include intranasal, buccal, sublingual and rectal. They are non-invasive routes for systemic drug delivery with the possibility of self-administration, or administration by family caregivers. The aim of this research was to provide insights into using transmucosal drug delivery to bring about the best possible symptom management for patients at the end of life, and to inspire scientists to develop new delivery systems to provide effective symptom management for this group of patients.

Orodispersible and transmucosal alternative medications for symptom control in adults

Paediatric palliative care makes frequent use of orodispersible and transmucosal drug delivery routes. The limited published experience of this practice suggests that it enables the delivery of needle-free symptom relief, with the potential to train family carers to administer anticipatory medications without reliance on trained health professionals. The aim of this research was to identify orodispersible and potential transmucosal alternatives that may be used in adults in the event of a patient having no oral or intravenous route and no access to subcutaneous injections.

The SPARK Project

The SPARK Project examines the best way to deliver pastoral, spiritual and religious care to children with life limiting illnesses and their families. Helen & Douglas House were involved in recruiting families pre- and post-bereavement to take part, as well as supporting focus groups. At the moment, we know very little about how to meet the pastoral, spiritual and religious needs of children and young people diagnosed with a life-threatening or life-shortening condition, and their parents. This study was done over 3 years from August 2020, to March 2023. The study involved focus groups and interviews with care givers, children and healthcare professionals to better understand their practices, needs and views.The aim of this study was to gather evidence the NHS and children's hospices can use to guide how they meet these needs, including the role of chaplaincy services (sometimes called pastoral and spiritual care services). It will also explore how chaplaincy services can support clinical and care teams involved in the care of these children and young people. The conclusion from this study was that having a life-shortening or life-threatening conditions brings multiple threats to the spiritual wellbeing and lived experiences of children and young people and their families. It demonstrated the need for more training in this area particularly in the NHS. From this study, it's recognised that spirituality and spiritual care needs to be part of a child's care pathway.

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