How can diagnostic assessment programs be implemented to enhance inter-professional collaborative care for cancer?

BackgroundInter-professional collaborative care (ICC) for cancer leads to multiple system, organizational, professional, and patient benefits, but is limited by numerous challenges. Empirical research on interventions that promote or enable ICC is sparse so guidance on how to achieve ICC is lacking. Research shows that ICC for diagnosis could be improved. Diagnostic assessment programs (DAPs) appear to be a promising model for enabling ICC. The purpose of this study was to explore how DAP structure and function enable ICC, and whether that may be associated with organizational and clinical outcomes.MethodsA case study approach will be used to explore ICC among eight DAPs that vary by type of cancer (lung, breast), academic status, and geographic region. To describe DAP function and outcomes, and gather information that will enable costing, recommendations expressed in DAP standards and clinical guidelines will be assessed through retrospective observational study. Data will be acquired from databases maintained by participating DAPs and the provincial cancer agency, and confirmed by and supplemented with review of medical records. We will conduct a pilot study to explore the feasibility of estimating the incremental cost-effectiveness ratio using person-level data from medical records and other sources. Interviews will be conducted with health professionals, staff, and referring physicians from each DAP to learn about barriers and facilitators of ICC. Qualitative methods based on a grounded approach will be used to guide sampling, data collection and analysis.DiscussionFindings may reveal opportunities for unique structures, interventions or tools that enable ICC that could be developed, implemented, and evaluated through future research. This information will serve as a formative needs assessment to identify the nature of ongoing or required improvements, which can be directly used by our decision maker collaborators, and as a framework by policy makers, cancer system managers, and DAP managers elsewhere to strategically plan for and implement diagnostic cancer services

“Something that helped the whole picture”: Experiences of parents offered rapid prenatal exome sequencing in routine clinical care in the English National Health Service

Objectives In October 2020, rapid prenatal exome sequencing (pES) was introduced into routine National Health Service (NHS) care in England. This study aimed to explore parent experiences and their information and support needs from the perspective of parents offered pES and of health professionals involved in its delivery. Methods in this qualitative study, semi-structured interviews were conducted with 42 women and 6 male partners and 63 fetal medicine and genetic health professionals. Interviews were transcribed verbatim and analysed using thematic analysis. Results Overall views about pES were positive and parents were grateful to be offered the test. Highlighted benefits of pES included the value of the additional information for pregnancy management and planning for future pregnancies. An anxious wait for results was common, often associated with the need to make decisions near to 24 weeks in pregnancy when there are legal restrictions for late termination. Descriptions of dealing with uncertainty were also common, even once results had been returned. Many parents described pES results informing decision-making around whether or not to terminate pregnancy. Some professionals were concerned that a non-informative result could be overly reassuring and highlighted that careful counselling was needed to ensure parents have a good understanding of what the result means for their pregnancy. Emotional support from professionals was valued, however some parents felt that post-test support was lacking. Conclusion Parents and professionals welcomed the introduction of pES. Results inform parents’ decision making around termination of pregnancy. When there are no diagnostic findings or uncertain findings from pES, personalised counselling that considers scans and other tests is crucial. Directing parents to reliable online sources of information and providing emotional support throughout could improve their experiences of care

Optimising Exome Prenatal Sequencing Services (EXPRESS): a study protocol to evaluate rapid prenatal exome sequencing in the NHS Genomic Medicine Service [version 2; peer review: 2 approved]

Background: Prenatal exome sequencing (ES) for the diagnosis of fetal anomalies was implemented nationally in England in October 2020 by the NHS Genomic Medicine Service (GMS). The GMS is based around seven regional Genomic Laboratory Hubs (GLHs). Prenatal ES has the potential to significantly improve NHS prenatal diagnostic services by increasing genetic diagnoses and informing prenatal decision-making. Prenatal ES has not previously been offered routinely in a national healthcare system and there are gaps in knowledge and guidance. Methods: Our mixed-methods evaluation commenced in October 2020, aligning with the start date of the NHS prenatal ES service. Study design draws on a framework developed in previous studies of major system innovation. There are five interrelated workstreams. Workstream-1 will use interviews and surveys with professionals, non-participant observations and documentary analysis to produce in-depth case studies across all GLHs. Data collection at multiple time points will track changes over time. In Workstream-2 qualitative interviews with parents offered prenatal ES will explore experiences and establish information and support needs. Workstream-3 will analyse data from all prenatal ES tests for nine-months to establish service outcomes (e.g. diagnostic yield, referral rates, referral sources). Comparisons between GLHs will identify factors (individual or service-related) associated with any variation in outcomes. Workstream-4 will identify and analyse practical ethical problems. Requirements for an effective ethics framework for an optimal and equitable service will be determined. Workstream-5 will assess costs and cost-effectiveness of prenatal ES versus standard tests and evaluate costs of implementing an optimal prenatal ES care pathway. Integration of findings will determine key features of an optimal care pathway from a service delivery, parent and professional perspective. Discussion: The proposed formative and summative evaluation will inform the evolving prenatal ES service to ensure equity of access, high standards of care and benefits for parents across England

Trail running : exploring South Africa’s serious leisure economy

A health-conscious mindset has grown rapidly among South African middle-class consumers. This can be seen by their embrace of sports watches, reward-based programmes, and participation in organised leisure activities such as cycling and running. Within this context, trail running is becoming increasingly popular; however, research on the nature of trail running in South Africa is limited. A theoretical understanding of the relationship that participants have with trail running, specifically the applicability of the serious leisure framework, could provide valuable insights into this emerging market. This study incorporated an exploratory case-study design. Quantitative data was collected using purposive sampling and an online survey to determine if trail runners undertook the activity as leisure careerists or not. The level of seriousness of respondents was measured using the six characteristics of serious leisure as defined in the Serious Leisure Inventory Measure (SLIM). The main findings were that many trail runners meet all six of the characteristics of serious leisure. ‘Perseverance’ and ‘Career’ followed by ‘Effort’ and ‘Identity’ were the most important factors to the trail runners. Motives of ‘Fun’ and ‘Sense of achievement’ were more important than ‘Fitness’ or ‘Social factors’, however. ‘Sense of achievement’ and ‘Social’ correlated the most strongly with respondents’ overall level of seriousness in the sport. Income impacted on motivations, however, with wealthier people more likely to report that they participated for Fun. In terms of gender, women were more likely to report that trail running boosted their self-image. In addition, trail running forms part of the serious leisure economy, as participants are prepared to spend substantial sums of money on related equipment and participation in events. This study provides valuable insights for marketing and design of trail-running events and contributes to the gap in the literature on serious leisure in South Africa.https://www.ajhtl.compm2021Gordon Institute of Business Science (GIBS

Potential of the family well being empowerment program as a core component of health and well being reform in Cape York communities

The Family Wellbeing (FWB) Program is an empowerment tool designed to address social and emotional wellbeing issues. Developed in 1993 in Adelaide by a group of Aboriginal leaders who were members of the stolen generation, the FWB Program intends to bolster individuals’ self-confidence and to promote acceptance of responsibility for family, work, and community life. The program sought to achieve these goals by developing their participants’ communication, problem solving, conflict resolution, and other general living abilities. The underlying principles of the FWB program are 1) all humans are capable of healing irrespective of their race, culture, and country, 2) human needs and values are universal, and 3) no matter how dire one's circumstances are, there are always choices that can be made. FWB assumes that an individual’s growing empowerment will have positive effects on themselves and people they interact with. Further, personal growth and empowerment is an ongoing process. The Program has been utilised in a range of Aboriginal settings throughout Australia as a framework to engage communities, train Aboriginal people in SEWB issues and life skills, and/or as a change management tool. The skills developed in the FWB program are readily applicable to personal, organisational and community issues. In north Queensland, FWB was adapted and implemented as a two-step participatory action research program. In its first stage, the program focused on enhancing individual empowerment as a preparation for tackling broader structural and organisational issues. This stage involved 30 hours of structured personal development training workshops. The second stage of the program focused on addressing the issues raised in the personal development sessions and promoting the value and safety of group activities to resolve these issues. Completion of the program provides participants with a nationally accredited qualification. Details about the implementation of the FWB program in its diverse range of settings have been meticulously documented since 1998 through collaborations with various organisations (see Appendix 1 and 2 for listing of partnerships, grants, publications and reports on the FWB and related initiatives). There is an increasing level of awareness about the value of this program for addressing SEWB issues and the demand for implementing this program across Australia is rising

Potential of the family well being empowerment program as a core component of health and well being reform in Cape York communities

The Family Wellbeing (FWB) Program is an empowerment tool designed to address social and emotional wellbeing issues. Developed in 1993 in Adelaide by a group of Aboriginal leaders who were members of the stolen generation, the FWB Program intends to bolster individuals’ self-confidence and to promote acceptance of responsibility for family, work, and community life. The program sought to achieve these goals by developing their participants’ communication, problem solving, conflict resolution, and other general living abilities. The underlying principles of the FWB program are 1) all humans are capable of healing irrespective of their race, culture, and country, 2) human needs and values are universal, and 3) no matter how dire one's circumstances are, there are always choices that can be made. FWB assumes that an individual’s growing empowerment will have positive effects on themselves and people they interact with. Further, personal growth and empowerment is an ongoing process. The Program has been utilised in a range of Aboriginal settings throughout Australia as a framework to engage communities, train Aboriginal people in SEWB issues and life skills, and/or as a change management tool. The skills developed in the FWB program are readily applicable to personal, organisational and community issues. In north Queensland, FWB was adapted and implemented as a two-step participatory action research program. In its first stage, the program focused on enhancing individual empowerment as a preparation for tackling broader structural and organisational issues. This stage involved 30 hours of structured personal development training workshops. The second stage of the program focused on addressing the issues raised in the personal development sessions and promoting the value and safety of group activities to resolve these issues. Completion of the program provides participants with a nationally accredited qualification. Details about the implementation of the FWB program in its diverse range of settings have been meticulously documented since 1998 through collaborations with various organisations (see Appendix 1 and 2 for listing of partnerships, grants, publications and reports on the FWB and related initiatives). There is an increasing level of awareness about the value of this program for addressing SEWB issues and the demand for implementing this program across Australia is rising