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Filling the gaps in survivor research

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Research could show how to alleviate the long-term effects of cancer and its treatment. Kathryn Godfrey reports

There is a small but growing body of research looking at the effects of cancer and its treatment on survivors. Research into this area has a dual role.

First, it builds a picture of the long-term impact of treatment, which is particularly relevant where treatment choices are available. Second, it provides information about the physical and psychological impact of having had cancer.

In the longer term these will enable research to focus on how to alleviate the effects of cancer and its treatment.
Recent papers demonstrate the scope of survivorship research.

Research priorities

  • Impact on family and friends
  • Impact of mental attitude on recovery
  • Improving mental attitudes
  • Impact of aftercare
  • Impact on social functioning
  • Impact of pain on quality of life
  • Role of diet in recurrence or survival
  • Effect of living with one’s family on cancer recovery
  • Do lifestyle factors improve survival?

A follow-up of patients treated for early stage ovarian cancer in the 1980s showed how long-term effects of treatment varied depending on the treatment option (Engelen et al, 2009). While 50% of patients treated with adjuvant chemotherapy or radiotherapy following surgery had long-term side-effects - mainly gastrointestinal - only 13% of a control group who had no adjuvant therapy, just surgery, reported long-term side-effects.

Skaali et al (2008) looked at the psychological impact by assessing fear of recurrence among 1,336 long-term survivors of testicular cancer. A quarter of survivors, who on average had been diagnosed 11 years previously, reported thinking about recurrence ‘quite a bit’ in the previous week and 7% ‘very much’. The amount that survivors dwelt on survival was inversely related to their quality of life, self-esteem and ability to cope.

Most research on the effects of cancer and its treatment has been done in adult survivors of childhood cancer.
The Childhood Cancer Survivor Study tracks the health status of US adults diagnosed with cancer between 1970 and 1986.

Oeffinger et al (2006) found that survivors of childhood cancer have a high rate of illness owing to chronic health conditions. Among 10,397 adult survivors, two-thirds had at least one long-term condition, with over a quarter having a severe or life‑threatening one.

A Dutch study has shown that the way in which parents deal with their child’s cancer may affect its impact for the young person in the long term (Robinson et al, 2009). Children whose parents reported being very distressed during diagnosis and treatment were more likely to be distressed as young adults.

Research also reveals the important and often-neglected socioeconomic effects.

Mols et al (2009) looked at employment in nearly 2,000 long-term survivors of prostate cancer, endometrial cancer, non‑Hodgkin lymphoma and Hodgkin lymphoma.

Excluding those who were unemployed before their diagnosis, half experienced no changes in their work situation following cancer diagnosis, 17% were working fewer hours, and 34% had stopped working or retired. Those who were older, had co‑morbidity or being treated with chemotherapy were most likely to have a change in work pattern.

Macmillan Cancer Support held a UK-wide public consultation to identify priorities for cancer research followed by a systematic appraisal of the research evidence to see how well these areas have been researched (Okamoto et al, 2007). This found that some of the key themes identified in the consultation are currently under-researched, and that the scope and quality of some studies was lacking.

The National Cancer Survivorship Initiative (NCSI) includes a work stream to identify what is and is not known about the health and well-being of cancer survivors and interventions to improve them, and recommend areas worth considering for future research.

Jim Elliott, research adviser at Macmillan and support officer for the NCSI research work stream, says: ‘There are significant gaps in our knowledge of what happens to cancer survivors as a result of their diagnosis and treatment.’

Dr Elliott says the researchers are working with other partners to map those gaps and then to commission research to make that information available.

‘We are also commissioning a comprehensive review of the evidence base for cancer survivorship, which will include both published and unpublished papers, ongoing studies and identify collections of clinical and research data that could be used more effectively to answer many of the questions.’


Engelen, M.J. et al (2009) Long-term morbidity of adjuvant whole abdominal radiotherapy (WART) or chemotherapy for early stage ovarian cancer. European Journal of Cancer; 6 February (published online ahead of print).

Mols, F. et al (2009) Long-term cancer survivors experience work changes after diagnosis: results of a population-based study. Psychooncology; 20 January (published online ahead of print).

Oeffinger, K.C. et al (2006) Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine; 355: 15, 1572-1582.

Okamoto, I. et al (2007) The Impact of Cancer on Everyday Life: a Systematic Appraisal of the Research Evidence. London: Macmillan Cancer Support.

Robinson, K.E. et al (2009) Survivors of childhood cancer and comparison peers: the influence of early family factors on distress in emerging adulthood. Journal of Family Psychology; 23: 1, 23-31.

Skaali, T. et al (2008) Fear of recurrence in long-term testicular cancer survivors. Psychooncology; 14 October (published online ahead of print)

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