Understanding and Utilizing the Unmet Needs of Teenagers and Young Adults with Cancer to Determine Priorities for Service Development: The Macmillan On Target Programme.

Abstract

Purpose: A systematic attempt to identify and address unmet needs among patients in a large regional teenagers and young adults (TYA) cancer service in the United Kingdom, including perspectives obtained from patients themselves, their families/supporters, and professionals. Methods: Questionnaires, focus groups, and interviews were undertaken with the following: patients (diagnosed ≥16 years, and aged 16-24 years at the time of study)-participation was 42 for questionnaire, 7 for focus group, and 6 for interview; family members/others in patients' lives ("networkers") (participation: 28, 0, and 4); and professionals (participation: 54, 0, and 97). Requirement management methodology was used to specify components for potential service interventions, which were then scored and prioritized. Co-creation was utilized to incorporate a deeper understanding of patient experience. Results: 42/108(39%) patients, 28/177(24%) networkers, and 122/322(38%) professionals participated. For patients, seven themes that "mattered most" (identified by >60% responders) were defined. For many, support was provided both to a lesser extent than needed and was sometimes unsatisfactory. For networkers, results identified the significant support offered by those around the patient and the impact on their own lives. For professionals, consensus was reached on interventions that could be utilized in clinical encounters with TYA to enhance care. A list of prioritized "requirements" was created to drive future service improvement. Conclusions: Areas identified for development included three specific initiatives applicable to other TYA services: a support website (www.tyahelp.co.uk); an electronic, age/developmentally specific, holistic needs assessment tool (the Integrated Assessment Map www.tyaiam.co.uk); and a portal linking use of the IAM to resources within the Help website (video illustration available at: https://vimeo.com/191019826).