NAT BTS
Research type
Research Study
Full title
Develop, validate and pilot test a Needs Assessment Tool (NAT) for young survivors of brain tumours.
IRAS ID
304734
Contact name
Janelle Yorke
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
1 years, 7 months, 29 days
Research summary
Summary of Research
The study is a 3 phase sequential design including qualitative and quantitative methods to develop, validate and pilot a needs assessment tool (NAT) for use in routine practice with survivors of a brain tumour aged 16-39 years. Qualitative data from a comprehensive systematic review examining the needs of young people diagnosed with a brain tumour were used to identify potential items for the draft NAT. Patient representatives were involved in generating the draft NAT. Potential participants for the study will be recruited from a brain tumour survivor late effects clinic at a Specialist Cancer Centre, they will be reminded that their participation is entirely voluntary, their decision will not impact ongoing care and informed consent will be taken for each phase separately.
Phase 1: Cognitive interviews with 5-7 participants will be conducted. Participants will be given a draft of the NAT and will be asked by the researcher to explain each item to ensure it is understood the way it is intended. Interviews will be recorded and transcribed by the researcher.
Phase 2: Approximately 150 participants will be recruited to complete the draft NAT, Supportive Care Needs Survey and PedsQL/ SF-36 at time point 1. Fifty participants will be asked to complete draft NAT one week later. Aspects of validity and reliability will be tested according to international guidance from Consensus-based standards for the selection of health status measurement instruments (Terwee et al, 2006). Access to the questionnaires will be via a university approved survey platform, Qualtrics.
Phase 3: Once the draft NAT has been validated, the study will conclude with a pilot test with 20 participants. Short semi-structured interviews with participants and clinicians will also conclude this phase to assess feasibility and examine the experience of using a needs assessment in routine follow-up clinicsSummary of Results
A needs assessment for YOUng adult survivors of a CentrAl Nervous system tumour has been developed, named YOU-CAN.
Potential questions for YOU-CAN were generated from qualitative data, using quotes directly from young people diagnosed with a CNS tumour. The first draft was also developed in collaboration with a patient involvement group and clinical experts. Interviews were conducted with eight young people to check the potential questions were understood the way they were meant to be. This phase resulted in a draft needs assessment tool with 49 questions.
The next phase involved 128 young people completing this and two other questionnaires for comparison, and rasch analysis was used to reduce the number of questions in a reliable manner.
This phase resulted in YOU-CAN, a reliable and valid needs assessment tool containing 16 questions that related to a range of issues experienced by young adult survivors of a CNS tumour.
YOU-CAN has been used in routine practice in a small number of patients attending their annual follow-up appointment. Interviews with patients and clinician participants reported it was easy to use and changed the focus of consultation. Young people said they discussed more issues than they would have otherwise raised. Further research is needed to establish guidance for clinicians to standardise the response to manage unmet needs once they are identified.
.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
21/NW/0344
Date of REC Opinion
22 Dec 2021
REC opinion
Further Information Favourable Opinion