The impact of healthcare experiences on quality of life in cancer survivorship
Amanda Drury argues that end-of-care interventions must encompass information about chronic effects, clear pathways of care to address late treatment effects, and programmes that support cancer survivors to develop appropriate self-management strategies.
The past two decades have seen enormous changes in Irish cancer services, affecting the location of care, the models of care delivery, and ultimately, the rates of cancer survival. The survival rates for individuals diagnosed with invasive cancer in the Republic of Ireland has risen from 44% in the mid-1990s to 61% in the period 2009-2013 . These improvements are largely a consequence of initiatives recommended in the 1996 and 2006 National Cancer Strategies, which aimed to reduce cancer incidence and mortality and enhance the effectiveness of cancer care services. These strategies paved the way for the restructuring of cancer services, increasing the capacity of medical and radiation oncology services and the rollout of cancer screening programmes for breast, colorectal and cervical cancer.
I entered the oncology nursing workforce in 2008, the beginning of a global economic recession. Recruitment of public sector staff was restricted and affected nursing, allied health and administrative staffing levels detrimentally in oncology settings. Parallel to economic events, the recommendations of the 2006 National Cancer Strategy led to the centralisation of cancer care from 32 low volume centres into eight cancer centres of excellence during this period. However, staff and resource shortages contributed to patient safety concerns and difficulties accessing cancer rehabilitation and supportive care facilities . The 1996 and 2006 National Cancer Strategies paid much attention to the healthcare issues affecting individuals with cancer during diagnosis and treatment. However, relatively little direction was provided for cancer survivorship issues, despite growing attention to this phase of the cancer trajectory internationally .
Surveillance and follow-up care are intrinsic components of cancer survivorship. From the moment of diagnosis, the individual living with cancer must learn to navigate complex care pathways, which are often complicated by fragmented healthcare systems and varying models of care provision . When the individual with cancer transitions from treatment to follow-up care, the frequency of contact with healthcare professionals reduces. The end of treatment brings about new uncertainties and individuals with cancer may feel abandoned by formal healthcare systems, experiencing insufficient continuity of care or difficulties accessing information and support [5-7]. In some cases, cancer surveillance activities may be prioritised above the management of non-critical late treatment effects in follow-up care . This raises the question of whether healthcare experiences in cancer survivorship impact quality of life outcomes?
There is a limited body of qualitative literature which suggests the quality and continuity of relationships with healthcare professionals may impact colorectal cancer survivors’ psychological well-being and perceptions of access to information and support [6, 7]. There remains an absence of empirical information describing the potential effects of care-related factors upon the quality of life outcomes of colorectal cancer survivors. A single study by Sisler et al.  proposes better quality of life and male gender are predictive of more positive perceptions of continuity of care among cancer survivors.
The Cost of Survival Study sought to explore the potential healthcare factors influencing colorectal cancer survivors’ quality of life outcomes, including continuity of care and access to support and information. Analysis of survey and interview data highlight improvements in survivors’ quality of life over time. However, more than half continue to experience burdensome symptoms up to five years after treatment. Although the majority were satisfied with the continuity of their follow-up care, many felt unprepared for the long-term effects of treatment, particularly peripheral neuropathy and bowel dysfunction which contributed to isolation and psychological distress. Survey results indicated that cancer survivors rely heavily upon hospital-based oncology healthcare professionals for support in the aftermath of cancer. Interview data suggested a range of clinical issues influence colorectal cancer survivors’ quality of life both directly and indirectly, including unmet information and supportive care needs, interactions with healthcare professionals and clinical time constraints.
Fostering a greater sense of closure
These findings suggest that healthcare experiences may influence survivors’ quality of life, as current models of follow-up care do not adequately address information and supportive care needs concerning physical and psychosocial survivorship issues. As the Irish healthcare system progresses with the implementation of the 2017 National Cancer Strategy recommendations regarding models of care and supportive care services for cancer survivors, oncology professionals must endeavour to highlight community, advocacy and charitable organisations which make meaningful contributions to the care of cancer survivors beyond the hospital system. Given the large proportion of survivors who felt unprepared for the late and chronic effects of colorectal cancer, interventions which foster a greater sense of closure at the end of treatment are necessary. These interventions must encompass information about chronic effects, clear pathways of care to address late treatment effects, and programmes that support cancer survivors to develop appropriate self-management strategies.
Amanda Drury is a registered general nurse, with clinical experience in radiation and medical oncology settings. She is currently a post-doctoral researcher in the School of Nursing and Midwifery and the Trinity Centre for Practice and Healthcare Innovation at Trinity College Dublin.