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.
- 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.
| What are patient-reported experience measures (PREMs)?
Bowel Cancer Australia’s My Colonoscopy Experience is a PREMs questionnaire.
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.
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.
- 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.
“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.
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.
About the Colorectal Cancer Standard Set
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.