Evaluation of an Educational and Vocational Service for Adolescent and Young Adults with Cancer: A Retrospective Review.

Purpose: A cancer diagnosis and its treatment has the potential to interfere with the ability of adolescent and young adults (AYAs) to remain engaged in education or employment, placing social connectivity, career progression, and financial security at risk. This study aimed at assessing the educational and vocational outcomes of AYAs supported by an Education and Vocational Support Program (EVSP). Methods: Consecutive case files were reviewed of AYAs accessing the EVSP at ONTrac at Peter Mac (January 2014-December 2016). Data collected included: demographic information; diagnosis and treatment; referral time point; education/employment status at referral and end of treatment; and interventions provided. Results: Two hundred nineteen AYAs had >1 appointment with an EVSP advisor. The mean age was 19.6 (13-26). The most common intervention delivered was direct consultations. Overall, 79% of AYAs were engaged in educational and/or vocational pursuits at last known status. Engagement with EVSP during treatment for employment and tertiary educational support had a high rate of attendance at last known status (during treatment: 93% and 92.5%; post-treatment: 71% and 69%, respectively). At referral to EVSP, 27 AYAs were not in education, employment, or training; however, >50% re-integrated in employment or study after EVSP support. Conclusion: This is the first study to describe the role of an EVSP for Australian AYAs. With the support of an EVSP, the vast majority of AYAs remained engaged in education and/or employment throughout their cancer trajectory. Further research will be required to evaluate the quality of interventions and incorporate the voice of AYAs to further inform service delivery.

Co-design and development of online video resources about immunotherapy with patients and their family.

BACKGROUND: Patients receiving novel treatments like immune checkpoint inhibitor therapy (ICI or immunotherapy) to treat their cancer require comprehensive information so they know what to expect and to encourage the identification and reporting of possible side-effects. Videos using patient stories can be reassuring and an effective method for conveying health information. OBJECTIVE: The objective of this study was to use a co-design process to develop video resources about immunotherapy to identify a) the key informational and supportive care needs of patients and family carers and b) topics clinicians recommended be addressed during pre-treatment nurse-led education. PATIENT INVOLVEMENT: Experience Based Co-design (EBCD) provided the framework for video development, to facilitate patient and carer involvement in every stage of research design and implementation, and video design and development. METHODS: Data were collected and used in four stages: 1) qualitative interviews, 2) co-design workshop, 3) filming plan and 4) feedback and editing. RESULTS: Thirty-five individuals contributed to the development of a suite of five videos called "Immunotherapy: What to Expect". Videos covered general treatment information, preparation for infusion, potential side-effects, balancing lifestyle with treatment and seeking support. Video run time ranges from 6 to 15 min. DISCUSSION: The EBCD process ensured that videos were developed to meet patient and carer identified needs associated with commencing and managing ICI therapy. The structure of EBCD in facilitating patient and carer involvement throughout the research and video development process ensured transparency throughout the project, and continuity of message, scope and outcomes. PRACTICAL VALUE: EBCD is a useful framework for developing patient-centred health resources. The videos developed are now available for patients and carers via YouTube, and provide education and support tailored to this groups' needs regarding ICI therapy for cancer.

Testing Consultation Recordings in a Clinical Setting With the SecondEars Smartphone App: Mixed Methods Implementation Study.

BACKGROUND: Health care systems are increasingly looking to mobile device technologies (mobile health) to improve patient experience and health outcomes. SecondEars is a smartphone app designed to allow patients to audio-record medical consultations to improve recall, understanding, and health care self-management. Novel health interventions such as SecondEars often fail to be implemented post pilot-testing owing to inadequate user experience (UX) assessment, a key component of a comprehensive implementation strategy. OBJECTIVE: This study aimed to pilot the SecondEars app within an active clinical setting to identify factors necessary for optimal implementation. Objectives were to (1) investigate patient UX and acceptability, utility, and satisfaction with the SecondEars app, and (2) understand health professional perspectives on issues, solutions, and strategies for effective implementation of SecondEars. METHODS: A mixed methods implementation study was employed. Patients were invited to test the app to record consultations with participating oncology health professionals. Follow-up interviews were conducted with all participating patients (or carers) and health professionals, regarding uptake and extent of app use. Responses to the Mobile App Rating Scale (MARS) were also collected. Interviews were analyzed using interpretive descriptive methodology; all quantitative data were analyzed descriptively. RESULTS: A total of 24 patients used SecondEars to record consultations with 10 multidisciplinary health professionals. In all, 22 of these patients used SecondEars to listen to all or part of the recording, either alone or with family. All 100% of patient participants reported in the MARS that they would use SecondEars again and recommend it to others. A total of 3 themes were identified from the patient interviews relating to the UX of SecondEars: empowerment, facilitating support in cancer care, and usability. Further, 5 themes were identified from the health professional interviews relating to implementation of SecondEars: changing hospital culture, mitigating medico-legal concerns, improving patient care, communication, and practical implementation solutions. CONCLUSIONS: Data collected during pilot testing regarding recording use, UX, and health professional and patient perspectives will be important for designing an effective implementation strategy for SecondEars. Those testing the app found it useful and felt that it could facilitate the benefits of consultation recordings, along with providing patient empowerment and support. Potential issues regarding implementation were discussed, and solutions were generated. TRIAL REGISTRATION: Australia and New Zealand Clinical Trials Registry ACTRN12618000730202; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373915&isClinicalTrial=False.