LB28
Patients experience of cancer survivorship: from focus groups to measurement
Helen Sheldon
Picker Institute Europe, Oxford, UK
Background
This abstract describes work to gather evidence about patients experiences
to inform the National Cancer Survivorship Initiative.
Method
Five focus groups were held with 38 people with experience of cancer; one
with carers and four with survivors (gynaecological/breast; prostate; invasive
procedures and long term side effects). Groups explored experiences of
life after cancer and perceptions of alternative models of follow-up
care. Thematic analysis informed by Grounded Theory was conducted of
transcripts, exploring areas of consensus and difference both within and
between groups. This was used to develop a patient experience
questionnaire to evaluate the impact of changes in cancer survivorship care at
eighteen test sites across England and Wales.
Results
Most focus group participants described broadly positive current
experiences of care, though often in the context of the hard work performed
to achieve this. Criticisms most frequently related to access to
specialist care. Gaps were also identified around information, support
for returning to work, benefits/financial advice and psychological support.
Participants expressed a preference for follow-up care delivered by hospital
specialists; GPs were thought to lack the specialist knowledge required.
There was general resistance to the three alternative models of care
presented: telephone, patient managed and group, but some limited support
for their potential to supplement current gaps. The focus group findings
were used to develop a questionnaire which was tested with twenty patients in
cognitive interviews and is now being implemented in a self-completion postal
survey of about 3,400 cancer survivors.
Conclusion
Focus groups with patients provide rich material for developing
questionnaire content reflecting the broad service needs of cancer survivors.
