"They've got a lot of needs and I don't think they're being met fully": A qualitative study of the multi-professional team approach to the management of children with optic pathway gliomas.

BACKGROUND

Optic pathway gliomas (OPGs) are low-grade tumours of the visual pathway. Although survival rates are high, there is considerable morbidity and hence treatment focuses on preservation of vison and quality of life. The multiple, complex issues faced by these patients are often confounded by a concurrent diagnosis of neurofibromatosis type-1 (NF1). As there is a paucity of literature addressing the current practices of the multi-professional team (MPT) caring for children diagnosed with an OPG, individual professional experiences often guide the MPT's approach to the care of these children and their families.

AIMS: This study aimed to gain views on the management of children with OPGs, from MPT members involved in their care, in order to inform recommendations on how to improve the service offered to these children and their families.

METHODS

A qualitative design collected experiential data from MPT members via semi-structured interviews. MPT focus groups were used to validate the data.

RESULTS

Data collected from 20 MPT members resulted in the overarching themes of Issues Faced by the Patient and Family and Challenges to the Holistic Care of the Patient. Four recommendations are suggested, namely (1) the production of an MPT training resource, (2) improved visual team links, (3) an OPG patient passport and (4) a joint NF1-OPG clinic.

CONCLUSION

There are many challenges to MPT members providing holistic care to patients with OPGs. As no OPG clinical practice guidelines currently exist, it is suggested that the above recommendations be piloted with evaluation to validate their use.