COSMIC Study - Colorectal cancer Outcomes in people with Severe Mental Illness

Interventions: We are assessing the impact of the National Bowel Cancer Screening Program (NBCSP) by comparing participation rates of people with and without Severe Mental Illness (SMI) and looking at health outcomes. We will be using data collected from Aug 2006 - latest available.
We are linking data using Commonwealth data (NBCSP, Medicare Benefits Schedule, Pharmaceutical Benefits Scheme, Australian Cancer Database & the National Death Index) to compare bowel cancer screening participation in people with SMI to those from the general population. We will additionally link these to the NSW cancer registry and hospital data to examine care pathways from diagnosis through treatment and end-of-life care.
We will also conduct a consultation with people with experience of SMI and Colorectal cancer and people with SMI in peer support roles who can provide their perspective on the barriers faced by people with SMI to gaining timely screening, diagnosis and optimal care.
These participants will be recruited from New South Wales consumer organisations and organisations with a strong focus on provision of peer support and advocacy. We will use a semi structured group interview schedule to facilitate discussion of a single focus group of 15 people. The group will consist of both people with lived experience who have direct experience of bowel cancer (n=10), as well as other people with lived experience who have supported people in this situation – as peer support workers or in other consumer advocacy/support roles (n=5). We will use this qualitative arm of the study to further develop our understanding of the quantitative findings. The consultation will also develop ideas on how to improve access to care.
Primary outcome(s): Participation rates in the National Bowel Cancer Screening Program assessed using data from the NBCSP.[Person-years will be calculated from entry into the study (2006) (the date of commencement of the NBCSP) or from the year that people become eligible for screening (i.e. age 50), whichever occurs later.. This is a retrospective cohort study, so all of the outcomes have already occurred and were recorded in the administrative data. This will be assessed when we receive the data.];Colonoscopy rates assessed using data from the NBCSP [Person-years will be calculated from entry into the study (2006 the date of commencement of the NBCSP), or from the year that people become eligible for screening (i.e. age 50), whichever occurs later, until colonoscopy. This is a retrospective cohort study, so all of the outcomes have already occurred and have been recorded in the administrative data.];Cancer diagnosis using data from the Australian Cancer Database[Person-years will be calculated from entry into the study (2006 the date of commencement of the NBCSP), or from the year that people become eligible for screening (i.e. age 50), whichever occurs later, until cancer diagnosis. This is a retrospective cohort study, so all of the outcomes have already occurred and have been recorded in the administrative data.]
Study Design: Purpose: Screening;Duration: Longitudinal;Selection: Case control;Timing: Both

干预措施：本研究旨在评估国家肠癌筛查计划（National Bowel Cancer Screening Program, NBCSP）的实施效果，通过对比重度精神疾病（Severe Mental Illness, SMI）患者与普通人群的筛查参与率，并考察相关健康结局。研究将采用2006年8月至最新可获取的数据集。
本研究将通过关联联邦政府相关数据集（包括国家肠癌筛查计划、医疗保险福利计划（Medicare Benefits Schedule）、药品福利计划（Pharmaceutical Benefits Scheme）、澳大利亚癌症数据库（Australian Cancer Database）及国家死亡索引（National Death Index）），对比重度精神疾病患者与普通人群的肠癌筛查参与情况。此外，我们还将关联新南威尔士州癌症登记系统（NSW cancer registry）及医院数据集，以分析从诊断、治疗到临终关怀的全流程照护路径。
我们还将与有结直肠癌患病经历的重度精神疾病患者，以及担任同伴支持角色的重度精神疾病患者开展咨询访谈，以获取他们对于重度精神疾病患者在及时筛查、诊断及优化照护过程中面临的障碍的见解。
上述参与者将从新南威尔士州的消费者组织及专注于同伴支持与维权的机构中招募。我们将采用半结构化小组访谈提纲，开展由15名参与者组成的单一焦点小组讨论。该小组将包含两部分人群：10名有结直肠癌直接患病经历的亲历者，以及5名以同伴支持工作者或其他消费者维权/支持角色身份参与过此类照护支持的重度精神疾病亲历者。本研究的质性研究部分将用于深化我们对量化研究结果的理解，同时也将梳理改善照护可及性的可行方案。
主要结局指标：1. 基于国家肠癌筛查计划数据集评估的国家肠癌筛查计划参与率（人年数将从研究纳入时间（2006年，即国家肠癌筛查计划启动年份）或人群达到筛查资格年龄（即50岁）两者中较晚者开始计算。本研究为回顾性队列研究，所有结局事件均已发生并记录于行政数据中，相关评估将在获取数据集后开展。）；2. 基于国家肠癌筛查计划数据集评估的结肠镜检查率（人年数将从研究纳入时间（2006年，即国家肠癌筛查计划启动年份）或人群达到筛查资格年龄（即50岁）两者中较晚者开始计算，直至接受结肠镜检查。本研究为回顾性队列研究，所有结局事件均已发生并记录于行政数据中。）；3. 基于澳大利亚癌症数据库的癌症诊断情况（人年数将从研究纳入时间（2006年，即国家肠癌筛查计划启动年份）或人群达到筛查资格年龄（即50岁）两者中较晚者开始计算，直至确诊癌症。本研究为回顾性队列研究，所有结局事件均已发生并记录于行政数据中。）
研究设计：研究目的：筛查相关；研究周期：纵向研究；研究类型：病例对照研究；研究时序：双向