Patients in the lead in Value Based Breast Cancer Care

Patients in the lead in Value Based Breast Cancer Care



Introduction. Within the Netherlands many initiatives arise to collect PROMs according to the ICHOM breast cancer standard set. At the Academic Breast Cancer Centre Erasmus MC these outcomes are being prospectively collected since October 2015 for all newly diagnosed primary breast cancer patients. PROMs -as part of the outcome set- are visible within the electronic medical records and discussed with patients by the treating physicians and nurses at the outpatient clinic. This feedback to patients is considered an essential part of Value Based Healthcare and unique for current health care systems. Moreover this feedback is believed to add the real value in care. For this feedback information on normscores per age group, per treatment type and per period since treatment is essential. We aimed to:

  • Collect ‘PROM normscores’ within a large group of patients since only with sufficient ‘normscores’ it is possible for both providers and patients to adequately intervene if necessary, i.e. to add value.
  • Collect patient reflections whether feedback at the outpatient clinic on PROMs scores indeed has the promise of adding value.
  • Collect patient reflections whether PROMs are useful to monitor themselves their wellbeing and quality of life.

Methods. We collaborated with the Dutch Breast Cancer Association. Women were approached via this Association and via social media in our locoregional patient network to complete PROMs and asked to reflect on usefulness in selfmonitoring/ self-management. The PROMs (‘EORTC-QLQ C30’, ‘EQ-5D-5L’, ‘EORTC-QLQ BR23’ and ‘BREAST-Q’) were supplied through a weblink. Moreover PROM scores were collected retrospectively within patients treated at the Academic Breast Cancer Centre between 2005-2015.


Results. 624 women from the Dutch Breast Cancer Association and social media groups participated. Also 764 breast cancer patients, of the Academic Breast Cancer Center, filled in PROMs to obtain normscores per ‘treatment’, ‘age group’ and ‘time since treatment’. Around 95% of participants judged PROM questionnaires as (very) acceptable and around 85% of participants responded positive when asked if 1) they thought a structural use of the PROMs at the outpatient clinic could improve the quality of care and 2) they thought the PROMs could be used as a ‘guidance tool for themselves’ in their individual care.


Summary. More than 1300 breast cancer patients provided breast cancer PROM ‘normscores’. Patients themselves confirmed that structural feedback on PROM scores by their physicians and nurses at the outpatient clinic could improve quality of care and believed that PROMs serve as monitoring system with added value. Patients were placed in the lead to obtain urgently needed information and paved the way for Value Based Breast Cancer care.