“This follow-up care would meet my needs, but I would still worry that problems with my health would not be found”: A cross-sectional survey of adult cancer survivors — ASN Events

“This follow-up care would meet my needs, but I would still worry that problems with my health would not be found”: A cross-sectional survey of adult cancer survivors (#5)

Afaf Girgis 1 , K Webber 1 , B Bennett 1 , A Bonaventura 1 , F Boyle 1 , E S Koh 1 , M Friedlander 1 , E Segelov 1 , D Goldstein 1
  1. Psycho-oncology Research Group, Ingham Institute for Applied Medical Research, UNSW Sydney, Liverpool, NSW, Australia

Aims: Meeting the needs of the large and growing population of cancer survivors requires innovative models of care. This study explores survivors’ perceptions of seven potential models of follow-up care, which varied in relation to the location, provider and level of specialisation of care.

Methods:  A self-report cross-sectional survey was mailed to adult cancer survivors from 5 NSW oncology units. Eligible survivors were diagnosed in 2008 with no evidence of recurrence in the past 6 months, had adequate English language and were physically and mentally capable of completing the questionnaire. Participants were presented with seven models of follow-up care and asked to indicate their level of agreement with two statements: 1) “This type of care would definitely meet my follow-up needs”; and 2) “If I had this type of care I would worry that any problems with my health would not be found”.

Results: 182 surveys were returned (ongoing, response rate 48.7% to date). Respondents had a mean age of 59.8 years (range 32-87), 78% were female, with most common primary cancers being breast (65.9%), colorectal (14.8%), prostate (4.9%) and ovarian (2.7%). The majority (93.8%) agreed that follow-up care at the hospital where their cancer was treated, by the oncologist who treated them, would meet their needs. Fewer participants supported the other models: at the hospital where their cancer was treated, but not necessarily by the doctor who treated them (64.5%); in specialist nurse-led clinics (57.7%); in cancer survivor clinics (48.8%); telephone or questionnaire based (37.2%); by GPs (34.5%); or internet based (20.5%). A substantial proportion (18.1%-55.1%) indicated that they would worry that problems with their health would not be found.

Conclusions: Whilst patients prefer specialist follow-up care, this is not sustainable. There is a need to demonstrate that survivors’ needs can be met through alternative models, which support self-directed and shared follow-up care.