Neurodisability clinical outcomes

Clinical outcomes are measurable changes in health, function or quality of life that result from our care. Constant review of our clinical outcomes establishes standards against which to continuously improve all aspects of our practice.

The Wolfson Neurodisability Service offers expertise in comprehensive assessment, diagnosis and advice on management of children with complex neurodevelopmental disorders.

The service is comprised of a number of specialist multidisciplinary teams, which can include developmental paediatricians, paediatric neurologists, clinical psychologists, occupational therapists, physiotherapists, speech and language therapists, assistive technologists and administrative staff. We treat a wide range of conditions.

The service provides both centre-based and outreach services. It aims to support families and local child development teams in their care of children by helping to assess needs, increase understanding and solve problems.

Osteogenesis Imperfecta (OI) is a condition that is present from birth, where collagen (the protein that is responsible for bone structure) is missing, insufficient, or of low quality. As a result, the minerals in the bone are not supported enough, which makes the bones weak and easy to fracture. There are different forms of the condition, from mild through to severe. People with mild forms may be minimally affected, while people with severe OI may experience many fractures, bone deformities, and require a wheelchair for mobility. The aims of treatment include reduction in rate of fractures and complications, and improvement in function.

Here, we provide our outcomes from the perspective of parents, carers (for patients aged under 12) and the young people themselves (aged 12 and over). This patient-reported outcome measure (PROM) gives us information about how our service assists with health-related knowledge and empowerment, and the effects of our care on daily living. Below is a summary of results from 2013/14 through to 2017/18.

Figure 1.1 Osteogenesis Imperfecta PROM results, 2017-18

Figure 1.2 Osteogenesis Imperfecta PROM results, 2016-17

Figure 1.3 Osteogenesis Imperfecta PROM results, 2015-16

Figure 1.4 Osteogenesis Imperfecta PROM results, 2014-15

Figure 1.5 Osteogenesis Imperfecta PROM results, 2013-14

The number of respondents varies each year, but the PROM is consistently completed more by parents and carers. There are more parents of patients under 12 years of age than there are patients aged 12 and over, and parents of patients 12 and over may also complete the PROM in addition to the young person. Nonetheless, we would like to increase the response rate amongst our young people to ensure that the results are representative of their perspective on our OI service.

Throughout the five years, the results show us that we consistently answer our parents’ important questions in a way that they can understand and we involve them in decision-making. We achieved 97% in 2015/16 and 100% in all other years for these aspects of our care. We had similar responses from our young people, but it is important to note that in 2017/18 one (13%) responded that they were not involved enough in decision-making about their care. This compares to 2015/16, when three (17%) indicated that they did not receive answers that they could understand, and two (11%) responded that they were not involved enough in decision-making about their care. To address this, the OI team are actively thinking about how to improve education and communication with our young people. We convened an Education and Life Story Group for Young People last year organised through the Clinical Psychologist for the OI team and we will plan a Transition Young People's forum over the next year. This year we have implemented parents/carers and baby groups to inform families about the condition, and to generate positive interaction between families.

Of those who required home or school input in the five years surveyed, 94% of parents/carers and 75% of our young people responded that input at home has improved independence, and 84% of parents/carers and 84% of young people answered that our input at school has helped their child/them to take part in physical education (PE) and exercise. This was achieved by our OI Clinical Nurse Specialist, Occupational Therapists and Physiotherapists, who go out to homes, local hospitals, schools and nurseries to help patients, their families and local health care and education providers to assess the environment, recognise potential hazards, and improve safety for children who are vulnerable to fractures. This outreach work helps to reduce our patients’ fracture risks and helps to build confidence in families, medical professionals, schools and nurseries as they support their children with OI. The OI team are currently evaluating school visits and the written information provided by sending a questionnaire to schools one month after visits. Once this is complete, the OI team plan to ask parents/carers and young people for their feedback on the school visits.

The Paediatric Osteogenesis Imperfecta National Team (POINT) has been developed as a national multi-disciplinary team (MDT) of therapy, nursing, psychology, and social work professionals involved in the care of children and young people with OI. The current chair of POINT is the OI Clinical Nurse Specialist (CNS) at GOSH. POINT meets six monthly to share knowledge, best practice, and discuss ideas for patient and family fora, outcomes, and interventions. This has been recognised by NHS England for its uniqueness and excellence in national collaborative MDT working for families with OI.

This information was published in September 2018.