Development of a Connectedness with Healthcare Providers Scale for Adolescents and Young Adults with Cancer

Across the cancer experience, from diagnosis through survivorship, adolescents and young adults (AYA) with cancer are struggling and their needs are not being adequately addressed. AYA survivorship is complicated by physical and psychosocial difficulties and higher participation in risk-taking behaviors. These complications increase AYA risk for secondary cancers and other chronic illnesses. To help minimize long-term health problems and engage in healthy lifestyle behaviors, AYA must establish and maintain a good relationship with their healthcare providers (i.e. their doctors and nurses) for long-term follow-up. The willingness of AYA to engage in long-term follow-up is influenced by their experiences of connectedness to healthcare providers across the cancer continuum (from diagnosis to survivorship). In an effort to better understand how AYA connectedness with their healthcare providers occurs and the influence connectedness has on AYA survivorship outcomes, an instrument to measure AYA connectedness with healthcare providers needs to be developed.

The purposes of this study are to: (1) develop a patient-reported measure of connectedness with healthcare providers for AYA and (2) evaluate the psychometric properties of the instrument. Findings from this study will contribute to an ongoing program of research focusing on the development of interventions to establish and maintain AYA connectedness with healthcare providers that will ultimately influence the survivorship outcomes of AYA.