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Research in brief

Cancer follow-up

  • 3 Comments

A study showed colorectal nurse specialists have an important part to play in follow-up care for colorectal cancer patients

In this article…

Exploring patient views of follow-up care following treatment for colorectal cancer

Developing solutions to enhance follow-up care

 

Author

Kinta Beaver is professor of cancer nursing, school of health, University of Central Lancashire.

Abstract

Beaver K (2011) Cancer follow-up. Nursing Times; 107: 10, early on-line publication.

This study aimed to explore patient views of follow-up care following treatment for colorectal cancer. Findings from qualitative interviews with patients centred on: “knowing what to expect” after treatment, “living with altered bowel function” and learning by “trial and error”. Colorectal nurse specialists were an important source of information and support. Future strategies for providing follow-up care for these patients should draw on their knowledge and skills.   

Keywords: Follow-up clinics, Cancer care, Communication

  • This article has been double-blind peer reviewed

 

Five key points

1.    Colorectal nurse specialists have a vital role to play in the follow-up care provided to colorectal cancer patients

2.    Follow-up arrangements are not meeting the needs of patients

3.    New models of care need to be developed that improve self care, care planning and make the best use of resources and technology

4.    Strategies for follow-up care should consider the needs of patients both with and without a stoma

5.    Developing web-based information could benefit these patients

After treatment for colorectal cancer, patients are followed-up in hospital outpatient clinics at regular intervals for routine monitoring, aimed at early detection of recurrent disease.The model of follow-up places a strain on the NHS as significant resources need to be employed in delivering this service.

The UK’s National Cancer Survivorship Initiative (NCSI) reports that current follow-up arrangements are not meeting the needs of patients and new models of care need to be developed that improve self care, care planning and make the best use of resources and technology (Department of Health, 2010). Nurse-led models of care could be a way forward.

A systematic review of the effectiveness of nurse-led models of follow-up care reported greater patient well-being and satisfaction (Lewis R et al, 2009). In addition, new modes of service delivery, such as nurse-led telephone follow-up interventions have been shown to be an effective way of providing support and information for cancer patients (Beaver K et al, 2009).

However, little is known about the specific follow-up care experiences of patients who have completed treatment for colorectal cancer. The aim of this study was to explore patient perceptions of their experiences of follow-up care after treatment for colorectal cancer.

Methods

This qualitative study explored patient views on follow-up care using face-to-face interviews with a purposive sample of 27 patients (with a mean age of 72 years) who had completed treatment for colorectal cancer. We developed an interview guide to explore issues related to: organisation of follow-up care, satisfaction with follow-up care, personal experience of care, information and advice provided during follow-up care and demographic and disease/ treatment details. Thematic analysis was used to analyse interview transcripts. 

Results

One dominant theme (“knowing what to expect”) and three subthemes (“living with altered bowel function”, “trial and error”, “information and support from specialist nurses”) emerged from the data.

Participants wanted more information on what to expect after the completion of treatment. Although they reported attending outpatient clinics, they learnt about their condition through “trial and error”. Participants were supported by colorectal nurse specialists while in hospital undergoing treatment but many reported being left to cope alone once they returned home.

All study participants had attended doctor-led hospital follow-up clinics, while a minority had experienced nurse-led clinics. Nurse-led clinics were perceived as beneficial in providing information and support, particularly on what to expect and what was “normal”. Written information was also well received. Participants would regularly contact colorectal nurse specialists by telephone for information and advice, perceived as helpful in providing both practical and emotional support.  

Conclusions

Findings from this study emphasise the important role colorectal nurse specialists play in providing information and support to patients following treatment. Future strategies aimed at providing follow-up care for colorectal cancer patients should draw on their knowledge and skills. Providing continuity of care may prevent minor physical and psychological problems escalating into long term chronic conditions that would be costly to the NHS. Although the study sample was elderly, they still used the internet to access information and further development of web based information could benefit colorectal cancer patients.

This article is a summary of: Beaver K, et al (2010). An exploratory study of the follow-up care needs of patients treated for colorectal cancer. Journal of Clinical Nursing; 19: 23-24, 3291-3330.

  • 3 Comments

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Readers' comments (3)

  • This interesting paper raised as many questions as it anwers from my point of view as the Head Of Patient Services for the UK charity, Beating Bowel Cancer.

    Through our own experience, observations and interactions with people living with and beyond treatment for bowel cancer, it is clear that the role of the CNS is pivotal as a keyworker to ensure continuity and consistency within the hospital care pathways during acute treatment phases.

    I am in complete agreement that the need for more information and support is just as important at the end of a cancer treatment pathway as it is at the beginning. Indeed, it could be argued that an individual's own lack of insight and knowledge and ability to self care - and a lack of information and experience in the management of recovering cancer patients in the community - is directly linked to the number of emergency readmissions to secondary care.

    In the current climate of limited resources and growing demands on resources and for service efficiency, however, there is a danger that this continued way of working could also come to represent a widening divide between primary and secondary care for the patient and their families.

    By keeping the focus of support from the patient living in the community focussed on the CNS and secondary care provider, patients and their families are not going to develop the level of confidence and trust needed in their GP and community nursing teams, even though that knowledge and the experience needed to support them probably does already exist to some degree amongst experienced community nursing staff - and certainly has an increasing potential to do so -in line with plans for greater GP commissioning, responsiblity and leadership.

    This could become a significant issue at a time of stretched resources struggling to meet the increasing demands from growing numbers of hospital CNS case loads.

    The concept of an online resource is an interesting one, and certainly one that the charity sector has also been exploring and developing for some time, in addition to offering well used specialist nurse helplines (telephone, email and website forums). These comprehensive, existing services are provided free of charge to everyone from both NHS and private healthcare settings, and are manned by nurses with specialist knowledge and training to support individuals. They are often used by people unable to contact their specialist nurses or conusltants directly. Theu are also sources of valuable, high quality printed information materials for people who do not have access to the internet.

    We also know from these patient and relative contacts that there is an urgent need for effective "rehabilitation and self management" programmes at the end of an active treatment phase. These "workshops" can and do empower patients to be able to make decisions about their lives, and give them the confidence to be able to slowly become more self-reliant. The topics covered include all aspects of physical, enotional and psychological need to support individuals ( and often their families too) in and getting back to work and re-establishing themselves in normal routines again after the disruption caused by their cancer treatments.

    Patients tell us that they want to become the "experts" in their own disease, and that this knowledge and confidence is key to facilitating their recovery. It could be argued that by encouraging greater involvement with tumour specific charities, and their own primary care teams, it would be possible to encourage this rehabilitation in a sustainable way, and reduce the dependance on the already overstretched CNS at the hospital as the first point of call when unexpected things happen to them.

    Finally, the value of one to one peer support via email and telephone should not be underestimated at this time of transition from cancer patient back to being a person living with/beyond a cancer diagnosis. This is widely acknowleged as often being very difficult time for people. The need for emotional support and practical advice however, can be effectively met from another person who has been in the same position. This method of peer support is also a very effective way of gaining greater insight and helping individuals to develop coping skills that reduce fear and improve longer term outcomes.

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  • "Providing continuity of care may prevent minor physical and psychological problems escalating into long term chronic conditions that would be costly to the NHS."
    cost to the NHS and the government is all we ever hear about. doesn't anybody ever consider the anxiety, pain and suffering caused to the patients and their need to maintain a certain quality of life? surely human life is valued above how much money it costs and whose purse it comes out of. what ever happened to compassion and the human touch? we, and especially healthcare personnel, should be thinking first and foremost about quality of care and needs, wellbeing and comfort of the individual patient and not about costs and budgets!

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  • I would be interested to know if anyone has had any experience of long term problems one might experience after having radiotherapy to the colon? This would involve possible irregularity of the bowel and/or problems with high roughage/healthy foods. I'd be grateful for any info available.

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