Faith Gibson: Great Ormond Street Hospital for Children NHS Foundation Trust
Rachel Taylor, Jeremy Whelan, Natasha Aslam: University College London Hospitals NHS Foundation Trust
Richard Feltbower: University of Leeds
Rosalind Raine: University College London
Funded by the NIHR (RP-PG-1209-10013).
About the project
Delivery of care to young people with cancer aged 15-24 years in England is provided by a multi-disciplinary team (MDT). This goes beyond having a nurse and doctor, and includes youth support co-ordinators, social workers and a range of allied healthcare professionals. While it has been established who the members of the MDT are and the Blueprint of Care stated that “the best standard of care for teenage and young adult patients is undoubtedly provided by clinicians who have been specifically trained to care for them”, the competence or expertise of the MDT had not been established.
There are some competency guidelines available for some professional groups but these were either generic to the profession or specific to the care of children or to adults. We believe young people have unique age-appropriate needs so these guidelines did not reflect the skills needed to fulfil these. In 2014, a competency guideline for nurses caring for young people with cancer was published in the UK by the Royal College of Nursing. However, to make sure care delivery was given in the same way by all professionals in the MDT, having a competency guideline they can all use would be useful.
What were our aims?
The aim was to provide international consensus on the competencies required by professionals to provide specialist cancer care for teenagers and young adults with cancer.
What did we do?
A Delphi Survey is a method of getting agreement on a subject by a group of experts. It is done by sending out a number of rounds of questionnaires, each time feeding back the results of the previous round so respondents can see what everyone else thinks. The survey is sent multiple times out until everyone’s responses are agreed.
The BRIGHTLIGHT Delphi survey was an international e-Delphi survey (it was sent as an online questionnaire) and was conducted over two rounds. Experts were defined as professionals having worked in this field of teenage and young adult cancer care for more than 12 months. We identified experts through publications and invitations via professional organisations.
The initial survey was developed from work they had undertaken previously in workshops with healthcare professionals in the UK, which has been published and can be accessed via this link. There were 87 closed questions with responses on a nine-point Likert scale, and further open-ended responses to identify other skills, knowledge and attitudes. Round Two contained only items with no consensus in Round 1 and suggestions of additional items of competency.
What did we find?
Of 179 professionals who registered to participate, 159 (89%) participated in round 1. The majority of participants were nurses (35%) or doctors (39%) from Europe (55%) or North America (35%). There was consensus to all 87 competencies but a number of other suggestions were made in open ended responses so a second round was sent back to participants, which were returned by 136 (86%). There were significant differences in what doctors, nurses and allied professionals felt were important skills, areas of knowledge and attitude. For example, 100% nurses vs. 79% doctors and 74% others agreed providing holistic care was important, whereas 80% doctors vs. 54% nurses and 44% others agreed being able to consent to a clinical trial was important.
You can access the full report of this study via this link.
Below is an infographic displaying a summary of the study, and the full infographic can be viewed here.