Survivorship is an increasingly important component of cancer care

A cancer survivor is defined as anyone who is living with cancer, or whose cancer has gone into remission. Traditionally cancer care has concentrated on diagnosing and treating the disease, and comparatively little support has been given to patients once their disease has been cured.

Survivorship care plans include educating patients about the potential long-term effects of their treatment; designing an appropriate follow up plan to monitor patients for new and recurrent tumours; and providing patients with necessary psychological and social support to allow them to return to their normal lives (Hewitt et al., 2005). However, this is a new area of research and there is currently little evidence about what information patients are given, and the impact of cancer on patients’ lives to inform survivorship guidelines.

In order to assess what information kidney cancer patients received during their treatment, and the physical, psychological and emotional impact of having kidney cancer, Kidney Cancer Canada conducted an online survey (Moretto et al., 2014). Two multiple choice questionnaires were designed – one for patients and their care givers, and one for urologists, and a total of 361 surveys were returned; 276 by patients, 45 by care givers and 40 by urologists.

The surveys showed that there were some major differences between what urologists reported telling their patients, and what information patients remember receiving. Over 80% of urologists reported advising patients to maintain adequate blood pressure control, stop smoking and follow a healthy lifestyle, while under 40% of patients remember receiving this advice. Furthermore, again over 80% of urologists report giving patients specific information about their patients’ tumour characteristics, lymph node involvement, and post-operative renal function, fewer than 60% of patients remember getting this information. However, similar numbers of urologists and patients report discussing tumour size and treatment options.

The reason for this difference is not clear. One explanation is that although doctors give this advice, patient retention is low as they may be in shock after receiving a cancer diagnosis. Alternatively, it could be a block in communication where doctors do give this information, but in a way that patients are not able to fully understand. There is also a chance that there is some recall bias in these results, as some patients had been diagnosed more than three years before they took the survey, and doctors may have reported what information they would like to give patients when not under time constraints, rather than what information they actually give patients in a pressured clinic environment.

Another interesting result highlighted by the survey is that although doctors accurately predicted the emotional impact of issues directly related to patients’ cancer diagnosis – such as fear of cancer recurrence – they consistently underestimated the number of patients who would suffer depression and related symptoms following a cancer diagnosis.

These results suggest that the way information is given to kidney cancer survivors needs to be assessed, and that patients need to be given more emotional support to come to terms with being a cancer survivor. Indeed, there are a number of groups working to improve the support given to cancer survivors: the Kidney Cancer Research Network of Canada Survivorship Initiative; the National Cancer Survivorship Initiative in the UK; and the LIVESTRONG Care Plan in the US.

It is estimated that there are 2 million cancer survivors in the UK, and 12 million in the US. As diagnosis rates and treatments improve, survivorship will be an increasingly crucial part of the cancer care pathway, and access to survivorship support services is one of the rights set out in the European Cancer Patient’s Bill of Rights. As well as a moral imperative to ensure the health and wellbeing of cancer survivors, with the annual global cost of disability and early death due to cancer approaching $1 trillion USD, there is also an economic benefit to ensure that cancer survivors have the support they need to live full, healthy and productive lives following their illness.

 

  • Hewitt M, Greenfield S, Stovall, E (2005). From Cancer Patient to Cancer Survivor: Lost in Translation. National Academies Press, Institute of Medicine Consensus Report
  • Moretto P, Jewett MA, Basiuk J, Maskens D, & Canil CM (2014). Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs. Canadian Urological Association journal = Journal de l’Association des urologues du Canada, 8 (5-6), 190-4 PMID: 25024789

 www.bhdsyndrome.org – the primary online resource for anyone interested in BHD Syndrome.

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