Oral Presentation Cancer Survivorship 2017

Willingness of cancer survivors to complete patient reported outcomes (PRO) surveys: a pilot study at Flinders Centre for Innovation in Cancer (FCIC), South Australia (#22)

Nadia Corsini 1 , Imogen Ramsey 1 , Greg Sharplin 1 , Michael Fitzgerald 2 , Bogda Koczwara 2 , Carlene Wilson 1 2 , Ingrid Flight 1 2 , David Roder 3 , Marion Eckert 3
  1. Cancer Council SA, Eastwood, SA, Australia
  2. Flinders Centre for Innovation in Cancer, Bedford Park, SA, Australia
  3. University of South Australia, Adelaide, SA, Australia

Background

There is a lack of population-level data on long-term outcomes following a cancer diagnosis aside from date and cause of cancer death. This could be remedied by routinely collecting patient reported outcomes (PRO) from cancer survivors.

Aim

The aim of this study was to determine acceptability of collecting PRO at baseline and 12 months later via a survey addressing psychosocial concerns post-treatment.

Method

The study setting was the FCIC survivorship clinic. Eligible patients had completed treatment with curative intent within three months. The Nurse Practitioner Candidate approached all eligible patients between October 2015 and July 2016 and obtained their verbal consent to be contacted by Cancer Council SA regarding participation. The primary outcome was response rate (the proportion of population approached that completed a survey; target 70%). Baseline results only are reported.

Results

47 patients were approached, 41 gave verbal consent (87.2%), 34 agreed to participate (72.3%), and 28 returned the survey (overall response rate = 59.6%). Reasons for declining at approach included: too distressed, life stressors and concern survey may trigger negative thoughts. Reasons for declining consent included family issues, not wanting to do survey, or were not provided. Participants reported that the survey covered personally important issues and there were few irrelevant questions.

Conclusions

Collecting PRO was challenging due to peoples’ lack of readiness to engage at 3 months post treatment or loss of interest when contacted to participate. Response rate was below requirements for representative coverage.  Participation may be improved by approaching people later and simplifying the approach and consent process. It is recommended that alternative methods are trialled to identify a sustainable approach to collecting PRO. This knowledge will enable identification of the burden and trajectory of long-term psychosocial outcomes following cancer treatment and will inform consumer centred support, advocacy and policy.