Patterns of follow up and survivorship care for people with colorectal cancer in new South Wales, Australia: a population-based survey

Abstract Background The incidence and survival rates for colorectal cancer in Australia are among the highest in the world. With population growth and ageing there are increasing numbers of colorectal cancer survivors in the community, yet little is known of their ongoing follow up and survivorship care experiences. This study investigated patterns and predictors of follow up and survivorship care received and recommended for adults with colorectal cancer in New South Wales (NSW), Australia. Methods Cross-sectional analysis within the NSW Bowel Cancer Care Survey, a population-based cohort of adults diagnosed with colorectal cancer between April 2012 and May 2013 in NSW. One year after diagnosis, participants completed a study specific questionnaire about their follow up and survivorship care experience and plans. Logistic regression was used to identify independent predictors of guideline-recommended care. Results Of 1007 eligible people, 560 (56%) participated in the NSW Bowel Cancer Care Survey with 483 (86% of study participants, 48% of invited sample) completing the survivorship survey. Among these 483 participants, only 110 (23%, 95% Confidence Interval CI 19–27%) had received a written follow up plan, with this more common among migrants, non-urban dwellers and those with little experience of the health system. Of 379 (78%) people treated with curative intent, most were receiving ongoing colorectal cancer follow up from multiple providers with 28% (23–32%) attending three or more different doctors. However, less than half had received guideline-recommended follow-up colonoscopy (46%, CI 41–51%) or carcino-embryonic antigen assay (35%, CI 30–40%). Socio-economic advantage was associated with receipt of guideline-recommended care. While participants reported high interest in improving general health and lifestyle since their cancer diagnosis, few had received advice about screening for other cancers (24%, CI 19–28%) or assistance with lifestyle modification (30%, CI 26–34%). Less than half (47%, CI 43–52%) had discussed their family’s risk of cancer with a doctor since their diagnosis. Conclusions Survivorship care was highly variable, with evident socioeconomic disparities and missed opportunities for health promotion

Optimising the expansion of the National Bowel Cancer Screening Program

Objectives: To estimate the impact of various expansion scenarios of the National Bowel Cancer Screening Program (NBCSP) on the number of bowel cancer deaths prevented; and to investigate the impact of the expansion scenarios on colonoscopy demand. Design: MISCAN-Colon, a well established, validated computer simulation model for bowel cancer screening, was adjusted to reflect the Australian situation. In July 2013, we simulated the effects of screening over a 50-year period, starting in 2006. The model parameters included rates of participation in screening and follow-up, rates of identification of cancerous and precancerous lesions, bowel cancer incidence, mortality and the outcomes of the NBCSP. Five implementation scenarios, based on biennial screening using an immunochemical faecal occult blood test, were developed and modelled. A sensitivity analysis that increased screening participation to 60% was also conducted. Participants: Australian residents aged 50 to 74 years. Main outcome measures: Comparison of the impact of five implementation scenarios on the number of bowel cancer deaths prevented and demand for colonoscopy. Results: MISCAN-Colon calculated that in its current state, the NBCSP should prevent 35 169 bowel cancer deaths in the coming 40 years. Accelerating the expansion of the program to achieve biennial screening by 2020 would prevent more than 70 000 deaths. If complete implementation of biennial screening results in a corresponding increase in participation to 60%, the number of deaths prevented will increase across all scenarios. Conclusions: The findings strongly support the need for rapid implementation of the NBCSP. Compared with the current situation, achieving biennial screening by 2020 could result in 100% more bowel cancer deaths (about 35 000) being prevented in the coming 40 years