Research Priorities in Children Requiring Elective Surgery for Conditions Affecting the Lower Limbs: A James Lind Alliance Priority Setting Partnership

For which topic were research priorities identified?

elective surgery of children with conditions affecting the lower limbs

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

In particular, orthopaedic surgical practice in children is almost exclusively based on poor-quality evidence. This poor-quality evidence has led to significant variation in surgical practices nationally and internationally. This variation has resulted in conflicting information and loss of confidence in treatment pathways and, sometimes, in the clinicians who deliver them. Lower limb pathology forms the bulk of the elective practice in children's orthopaedic diseases, and these diseases share similar functional limitations in mobility.

What was the objective?

to identify and prioritize research questions concerning the elective surgical management of children with conditions affecting the lower limbs by engaging patients, carers and healthcare professionals

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

July 2017 - September 2018

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: identifying and inviting partner organizations. Step 2: collecting research uncertainties: via survey: partner organizations encouraged to freely distribute the survey link and solicit research questions and uncertainties from their members, parents asked to encourage their children to fill in survey, steering group encouraged submission of questions from a broad array of individuals from across the society using a variety of media, including newsletters, internet message boards and postal questionnaires, 1023 questions submitted. Step 3: data processing: submissions organized into broad lower limb condition categories, check against evidence, resulting in 75 indicative research questions. Step 4: interim ranking: longlist of 75 questions, survey asking participants to identify the 10 most important questions, top 26 questions taken forward. Step 5: final prioritization: workshop: with nominal group technique, discussions and rankings

Which stakeholders took part?

Patients, carers, healthcare professionals. Survey: 388 participants: patients, carers, nurse educators, advanced nurse practitioners, clinical or healthcare scientists and clinicians (paediatricians, physicians, physiotherapists, occupational therapists, nurses, general practitioners and orthopaedic surgeons). Interim ranking: 234 participants. Workshop: 30 participants: 6 physiotherapists, 9 parents, 4 patients, 7 orthopaedic surgeons, 1 clinical scientist, 1 advanced nurse practitioner and 2 charity representatives.

How were stakeholders recruited?

Participants were recruited through hospital clinics, patient charities and professional organizations.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 2 charity representatives, 2 parents, 1 patient, 2 physiotherapists, 2 allied health professionals, 4 pediatric-orthopaedic surgeons, a surgical trainee, the JLA advisor and the JLA PSP administrator. The members designed the survey, and were involved in data processing and interim ranking.