What are patient-reported measures?
 
Communicating the unique patient perspective is vital for learning how to make healthcare services better and safer for patients, and for understanding what matters most to patients when making decisions about their treatment and care.

Patient Reported Measures (PRMs) are questionnaires that capture a patient’s perspective of their health, healthcare experiences and the impact disease and treatment is having on their wellbeing.
 
There are two types of PRMs -
  • Patient-Reported Experience Measures (PREMs) ask patients about their healthcare experience; 
  • Patient-Reported Outcome Measures (PROMs) create an opportunity for patients to tell their specialist about how cancer, treatment, and side-effects are affecting their life.

PREMs chart
What are patient-reported experience measures (PREMs)?
 
Healthcare providers need to understand what ‘good care’ means to patients and exactly what patients experience during their care.
 
Patient-reported experience measures (PREMs) capture the patient’s view on health service delivery (e.g., communication with nurses and doctors, staff responsiveness, discharge, and care coordination) and can be used as important and meaningful measures of quality of care, for performance monitoring purposes, and to drive improvement.

By asking patients questions about their experience using a PREMs questionnaire, it is possible to find out what processes are working well and what needs improvement, so that hospitals and healthcare services can fix them.

Bowel Cancer Australia’s My Colonoscopy Experience is a PREMs questionnaire.
 
It allows you to report what the colonoscopy experience was like for you, because as a patient you can see signs of high or poor quality that may not be seen by staff.

With 1.1 million colonoscopies to be performed in Australia by 2021, the My Colonoscopy Experience questionnaire remains open indefinitely – because every patient’s feedback about their colonoscopy experience is unique and valuable.

My Colonoscopy Experience

  
PROMs chart

What are patient-reported outcome measures (PROMs)?
 
Patient-reported outcome measures (PROMs) provide a picture of the impact disease and treatment have, from the patient’s perspective, including side effects, mental health, and emotional wellbeing. 
 
In their simplest form, PROMs are a tool for patients to communicate how they are actually doing.

Traditionally, health systems and medical specialists have focused on measuring clinical outcomes because they are much easier to measure— a patient either survives or they don’t.

But today, for most of medicine, the question is no longer whether someone will survive, but how their life will be after treatment.
 
There are two basic types of PROMs -
  • General health PROMs can be used to survey patients with any condition. They usually focus on general well-being, mental health and/or quality of life.
  • Condition-specific PROMs usually focus on the symptoms of a disease (i.e. bowel cancer). They may ask questions about your mobility, function, or pain levels in certain areas of your body.
Bowel Cancer Australia’s My Bowel Cancer, My Voice, is a condition-specific PROMs questionnaire.
 
By prioritising concerns identified by bowel cancer patients as being the most important to them, PROMs help specialists deliver treatment and care that is more personalised, responsive, and effective - giving real meaning to the term ‘patient-centred care’.
 
Specialists can use PROMs information to tailor patient treatment options and to reflect on quality improvement for all bowel cancer patients.
My Bowel Cancer My Voice Patient

My Bowel Cancer My Voice Specialist

 
Baseline Patient questionnaire
A global standard in bowel cancer patient care
 
The Colorectal Cancer Standard Set was presented for the first time on May 17 at the 2016 ICHOM Conference at University College London, UK.
 
In a world-first, health professionals, support groups and patient representatives from Europe, Asia, United States and Australia have joined forces to establish and launch a global set of outcomes that reflect the issues that matter most to colorectal (bowel) cancer patients.
 
The Colorectal Cancer Standard Set, developed thanks to an international collaboration between Bowel Cancer Australia and the International Consortium for Health Outcomes Measurement (ICHOM), provides the unique opportunity for healthcare providers to share data and learn from one another through one global standard.

“The Standard Set restructures care delivery around value-based outcomes, which has been shown to improve quality of care and curb inefficiencies,” said Professor of Surgical Oncology at Leiden University Medical Center, The Netherlands, Dr Rob Tollenaar, who is presenting the Standard Set for the first time at the ICHOM Annual Conference in London.

“Measuring, reporting, and comparing health outcomes are among the most important steps toward rapidly improving patient care and reducing costs. By implementing the Colorectal Cancer Standard Set, health providers become part of an expanding, international community of innovative healthcare providers dedicated to improving value for the millions of bowel cancer patients around the world,” he said.

Bowel cancer is the third most common cancer in the world, with around 1.4 million new cases diagnosed each year. It is predicted that this figure will rise to 2.4 million new cases annually worldwide by 2035.

“The ultimate objective of the Standard Set is to help improve cancer care, leading to better health outcomes for patients,” said Bowel Cancer Australia CEO Julien Wiggins.

“Health professionals are gathering more data than ever before, yet what is measured often has little relationship to the results that matter most to the patients themselves. Led by a team of doctors, researchers, patient support groups and, most importantly, patients from around the world, the Standard Set becomes a model for global best-practice in patient care.”

Bowel Cancer Australia Patient Ambassador and Former Liberal MP Donna Bauer, one of the patient representatives who helped shape the outcomes contained in the Colorectal Cancer Standard Set, says long-term care and quality of life were identified among the most important, yet unacknowledged, aspects of patient care.

“Bowel cancer affects people long after the short recovery period from surgery or treatment, and physical and emotional health problems, such as bowel functioning, dietary considerations and anxiety, can remain for the rest of your life. The Standard Set will facilitate open communication and the sharing of knowledge to help patients in the long-term,” she said.

Australian representatives on the Working Group include: Bowel Cancer Australia, Donna Bauer (Patient Representative and Bowel Cancer Australia Ambassador), Professor John Zalcberg (Monash University), and Professor Craig Lynch (Peter MacCallum Cancer Centre).

For a complete overview of the Colorectal Cancer Standard Set, including definitions for each measure, time points for collection and associated risk factors, visit Bowel Cancer Australia's online shop.
 
ICHOM
| The ICHOM Colorectal Cancer Working Group
 
Long-term health outcomes and quality of life were identified among the most important, yet unacknowledged, aspects of colorectal (bowel) cancer care, according to an international patient survey led by the Colorectal Cancer Standard Set Working Group. The Working Group is a global collaboration of health professionals, clinicians, patients and consumer health organisations led by Bowel Cancer Australia and the International Consortium for Health Outcomes Management (ICHOM).

In a world-first initiative, more than 200 bowel cancer patient advocates from Australia, North America and Europe, were invited to share their lived experience of cancer, and their perspectives on their treatment and management, to help shape a global standard in care.

The Colorectal Cancer Standard Set provides the unique opportunity for healthcare providers to share data and learn from one another through one global standard, which is assisting with the implementation of patient-centric best practice guidelines for prevention, diagnosis, treatment and recovery. The aim of the initiative is to develop an international set of outcomes that reflect the issues that matter most to bowel cancer patients.

“Bowel problems are not limited to the short recovery period after surgery or treatment, and the impact of the cancer often remains for the rest of your life,” said Bowel Cancer Australia Patient Ambassador and Former Liberal MP Donna Bauer, who helped develop the Standard Set.

“There’s a tendency for healthcare professionals to rely too heavily on the short-term benefits and side effects of treatment options. The adoption of an international Standard Set will facilitate open communication and the sharing of knowledge to help patients with the physical and emotional impact of cancer in the longer-term,” she said.

In the survey, patient respondents also cited overall bowel function, dietary considerations and anxiety and depression, as important factors when assessing quality of life.

“Some patients cannot eat normally again because of the impact of cancer treatment on their bowel function. Always having to check where the toilets are and avoiding places where you can’t go to the toilet immediately is also a major issue for many people,” said Mrs Bauer.

Fear of ostomy, fear of disease progression and concerns about the future were also among the main concerns.

Bowel Cancer Australia, who developed the Standard Set in consultation with ICHOM and global partners, says the findings are not entirely surprising and the survey reflects the frustration of many bowel cancer patients worldwide.

“Health professionals are gathering more data than ever before, yet what is measured often has little relationship to the outcomes that matter most to the patients themselves. Through the implementation of the Standard Set, we have a chance to turn this around and adopt a model for global best-practice in patient care,” said Bowel Cancer Australia CEO Julien Wiggins.
 
"The ultimate objective is to help improve cancer care, leading to better health outcomes for patients."
 
The adoption of the Colorectal Cancer Standard Set will enable healthcare providers globally to compare, learn and improve patient care.
 
"By collaborating with our international partners from North America, Europe and Asia we have a unique opportunity to share data and learn from one another through one global standard," Mr Wiggins said.
 
"This is particularly important in the Australian context where there is an urgent need to increase our understanding of bowel cancer, particularly in its advanced stages. Data on advanced bowel cancer is not routinely kept in Australia, and we do not know what treatment patients receive, how they respond to this treatment and their level of care," he added.

About the Colorectal Cancer Standard Set
The Colorectal Cancer Standard Set measures outcomes for patients with newly pathologically diagnosed invasive colorectal cancer (stage I-IV). Key outcomes for measurement, as identified by the Working Group, are categorised according to the following: degree of health; survival and disease control; quality of death; and disutility of care. The following treatment approaches (or interventions) are covered by the Colorectal Cancer Standard Set: surgery; radiotherapy; chemotherapy; and targeted therapy.
 
About ICHOM and the Working Group
The International Consortium for Health Outcomes Measurement, or ICHOM, was founded in 2012 by Professor Michael E. Porter of Harvard Business School, the Boston Consulting Group, and the Karolinska Institute. The Set was developed by the ICHOM Colorectal Cancer Working Group, which comprises international leaders and patient representatives across 20 organisations and medical research centres from 10 countries. The Set was co-sponsored by Bowel Cancer Australia, Dutch Institute for Clinical Auditing and Centraal Ziekenhuisgroep (CZ). The standardisation process commenced in July 2015.
 
 

Related Information - Patient-reported measures

My Bowel Cancer, My Voice - Patient

My Bowel Cancer, My Voice

Share your colonoscopy experience

My Colonoscopy Experience

My Bowel Cancer, My Voice - Specialist

My Bowel Cancer, My Voice - Specialist