Completed Research Project
Discussing survivorship with patients with haematological malignancies
Investigators: Lobb EA, Joske D, Cannell P, Butow
P, Kristjanson L.
Funding: Edith Cowan University Industry Collaborative
Scheme and Sir Charles Gairdner Hospital ($52,000)
Abstract: Although many people think that completion of cancer treatment is a time for patients to feel better and experience some relief, it has also been identified as a time when patients feel particularly vulnerable. This study had 2 stages and investigated patients’ information, emotional and support needs at the time of completion of treatment for their haematological cancer. In stage 1 semi-structured telephone interviews were conducted to describe the specific issues patients with haematological malignancies face when treatment is finished. In stage 2 a questionnaire was mailed to 113 adult patients who had been diagnosed with a haematological malignancy and who had completed treatment with the intention of cure or substantial remission between September 2005 and July 2006 at two major cancer services in Perth. The majority of participants (59%) described their cancer status as “in remission”. Fifty-four percent (54%) considered themselves a “survivor” and 36% indicated they were not one “yet”. The majority (59%) indicated that it would have been helpful at the time of finishing treatment to have talked with a health care professional about their experience of diagnosis and treatment. 1/3 of participants had unmet needs, the other two-thirds either had no need or had a need, but it was being met. The average number of unmet needs was 6 (range 0-25). The most frequently endorsed patient needs related to care co-ordination and help to manage the fear of recurrence. The most frequently endorsed unmet needs included managing the fear of recurrence, the need for a case-manager and the need for communication between treating doctors. Younger patients had significantly more unmet needs and there was a trend for those not working to have more unmet needs. There was also a trend for patients with more unmet needs to want to talk to a health professional. There were no other significant associations. This study provides valuable data on patients needs in the first 12 months of finishing treatment. Younger patients had significantly more unmet needs and may need additional support. Almost one half (42%) had a strong need for help in managing the fear of recurrence. Over half of participants indicated that it would have been helpful to talk to a health professional on finishing treatment. The data gathered in Stages 1-2 will be used to develop an interview protocol to discuss survivorship issues with patients with haematological cancers. A randomised controlled trial will be undertaken to measure the impact of an interview on patients’ information, emotional and support needs, cancer related anxiety, coping and psychological well-being.
