Michael C G Stevens1,2, Paul Beynon1, Alison Cameron1, Jamie Cargill1, Jennifer Cheshire1, Sue Dolby1,3. 1. South West TYA Cancer Service, University Hospitals Bristol NHS Foundation Trust, Bristol Haematology Oncology Centre, Bristol, United Kingdom. 2. Translational Health Sciences, Bristol Medical School, University of Bristol, Bristol, United Kingdom. 3. Psychological Health Services, University Hospitals Bristol NHS Foundation Trust, Bristol Royal Hospital for Children, Bristol, United Kingdom.
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).
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).
Entities:
Keywords:
co-creation; need assessment; requirement management; service development
Authors: Suzanne E J Kaal; Emma K Lidington; Judith B Prins; Rosemarie Jansen; Eveliene Manten-Horst; Petra Servaes; Winette T A van der Graaf; Olga Husson Journal: J Clin Med Date: 2021-04-22 Impact factor: 4.241
Authors: Paolo Giorgi Rossi; Francesca Ferrari; Sergio Amarri; Andrea Bassi; Laura Bonvicini; Luca Dall'Aglio; Claudia Della Giustina; Alessandra Fabbri; Anna Maria Ferrari; Elena Ferrari; Marta Fontana; Marco Foracchia; Teresa Gallelli; Giulia Ganugi; Barbara Ilari; Sara Lo Scocco; Gianluca Maestri; Veronica Moretti; Costantino Panza; Mirco Pinotti; Riccardo Prandini; Simone Storani; Maria Elisabeth Street; Marco Tamelli; Hayley Trowbridge; Francesco Venturelli; Alessandro Volta; Anna Maria Davoli Journal: JMIR Mhealth Uhealth Date: 2020-06-08 Impact factor: 4.773