Psychosocial and information needs of people affected by colorectal cancer are poorly met during follow-up
- Correspondence to Lisa Kidd
Institute for Applied Health Research, School of Health, Glasgow Caledonian University, Cowcaddens Road, Glasgow G4 0BA, UK;
Implications for practice and research nursing practice
▪ Follow-up and aftercare services for people affected by colorectal cancer should place more emphasis on aspects of patient needs (such as quality of life, lifestyle advice, psychosocial issues, information needs and self-management) in making the transition into the survivorship period. Nurses have a key role to play in this.
▪ Nurse-led models of follow-up may be favourable in providing information tailored towards patient needs and outcomes; more research is needed in this area to determine feasibility, acceptability and impact on outcomes.
Follow-up is typically the phase in which people affected by cancer enter on completion of primary treatment. There is considerable variation in models of follow-up, dependent on cancer type, clinician preferences and local guidelines. For people affected by colorectal cancer, this usually involves hospital outpatient review at regular, but decreasing, intervals over a period of several years and typically involves investigations such as blood tests, CT scans and colonoscopies. The primary purpose of follow-up is aimed towards disease surveillance, in the hope that early detection and treatment of metastatic disease will lead to improved survival. Although this intensive approach has been found to be associated with an overall survival benefit in people treated for non-metastatic cancer, the optimal strategy and setting for its delivery remains unknown.1 2 Of further concern, particularly given the growth in cancer survivorship and thus the growing number of people requiring follow-up and aftercare, is increasing evidence that patients' experiences and their ongoing psychosocial needs, as they make the transition from cancer patient to cancer survivor, are frequently neglected.2 3
These issues are of great significance to people affected by colorectal cancer as highlighted in the findings of this study by Beaver and colleagues. Such findings support those of several national, large-scale surveys of patients' experiences, including the recently published Cancer Patient Experience Survey Results by the Department of Health,4 involving over 67 000 patients, which consistently highlight that people's needs are poorly met.5,–,8 Disappointingly, the findings from the authors' study are further evidence of the lack of impact, and progress made, since the publication of key guidelines such as the National Institute for Health and Clinical Excellence Supportive and Palliative Care guidance in 2004 which also highlighted the need to address such issues.
In acknowledging these gaps, Beaver and colleagues set out to conduct an exploratory study involving semistructured interviews with 27 patients who had completed active treatment for colorectal cancer to explore their views and experiences of follow-up care. The interview aimed to generate discussion around several key topics including organisation of follow-up care, satisfaction with follow-up care, personal experience of care and information and advice during follow-up care.
The key findings revealed that ongoing psychosocial and informational needs remained unmet following completion of treatment, particularly, around aspects such as managing bowel/stoma function and diet. The few patients who had experienced nurse-led, as opposed to medical, follow-up appeared to perceive their needs had been met to a greater extent. The authors concluded that follow-up appointments generally failed to present an opportunity to discuss concerns around patients' ongoing physical and psychosocial needs.
This was a well-designed study, conducted by renowned researchers in the field. There is much discussion currently taking place around the redesign and reorganisation of follow-up and aftercare services for people affected by cancer (eg, the potential introduction of survivorship care plans2); thus the work was timely and carried out in response to the need to re-examine existing models of follow-up and how well these meet the needs of cancer survivors. My main critique of the article is that the authors failed to maximise the opportunity to present how key demographics and disease-specific issues may have influenced or shaped peoples' experiences of follow-up and their perceived needs during this time. More specifically, the article provides little detail on how and whether contextual factors such as the age and gender of the participants, time since diagnosis and type of treatment received had any impact. Such factors may influence peoples' experiences and expectations of follow-up services and are likely to shape their ongoing physical and psychosocial needs in the survivorship period. The authors could have used the article to present a more nuanced account of these issues.
My final critique of the article is that the authors do not appear to have situated their work within the context of the growing emphasis around cancer survivorship and the long-term physical, psychological and social supportive care needs of cancer survivors. It is unclear from the study when the data collection was carried out, but given that interest in survivorship within the UK has been steadily gathering pace over the past 5 years in particular, it is likely that the work was carried out during this time frame. Although the authors conclude that psychosocial needs remain unmet following completion of cancer treatment, there is little insight into what these specific needs are other than in relation to bowel function, diet and information provision. The semistructured interviews with participants could have provided a very valuable and much needed opportunity to capture and understand in depth, the nature and impact of ongoing physical and psychosocial supportive care needs that cancer survivors experience. As yet, the bulk of the work in this area originates from the USA,5 6 with work in the UK only now beginning to emerge.7 8