Resources for clinicians and patients

The PRMs program has developed a series of resources for health professionals and consumers.

For consumers

Understanding patient-reported measures

Fact sheet: Patient-reported experience measures (PREMs)
We aim to deliver the best care possible, and your feedback can help us to improve our service. This information is for people who have been invited to participate in the Patient Reported Measures Program.

Fact sheet: Patient-reported outcome measures (PROMs)
This information is for people who have been invited to complete a brief survey about their health condition and overall wellbeing. This is known as a patient reported outcome measures (PROMs) survey.

Fact sheet: Is your wound bothering you? WOUND-Q© survey
A visual guide for people who are asked to complete a survey about their wound. The survey is called WOUND-Q©.

Fact sheet: Providing feedback on your care - Patient-reported measures
This information is for people who have been invited to participate in the patient-reported measures (PRMs) program. They may be asked to complete one or more surveys about their health and experience of receiving care.

Fact sheet: Paediatric Integrated Care Survey
Information for people who have been invited to complete a brief survey about their child’s healthcare.

Video: Patient Reported Measures
This video is produced by St Vincent’s Hospital Sydney and Healthily to explain patient-reported measures to consumers.

For clinicians

Health Outcomes and Patient Experience (HOPE)

Using patient feedback to improve care

Video: HOPE demonstration for primary care clinicians

Video: Demonstration for practice managers and administrators implementing HOPE

Patient-reported outcome measures: Methods for analysis and reporting
Methods for analysis and reporting on patient-reported outcome measures to be used by data analysts, statisticians and researchers working with PROMs data.

Patient-reported measures capability development framework
Develop the capabilities required of a workforce that delivers outcomes that matter to patients and carers.

Patient-reported measures change and adoption strategy
Discover the implementation planning and support needed to collect and use PRMs in clinical care.

Patient-reported measures stakeholder engagement and communications framework
Use these stakeholder engagement and communication channels to implement the NSW Patient Reported Measures program.

Analytic Principles for Patient Reported Outcome Measures
Patient-reported measures assess health-related quality of life, functional status, symptoms and symptom burden, treatment burden, health behaviours and health status. For robust assessments and conclusions, analyses take account of patient characteristics, time, data quality and fair comparisons.

Patient Reported Measures Program Formative Evaluation Report 2017
This document presents the results of the formative evaluation of the Patient Reported Measures (PRMs) Program, which is a component of the NSW Integrated Care Strategy (Strategy).

Patient Reported Measures Data Governance and Management Framework
The Framework provides the stakeholders of PRM data with an instrument to govern PRM data assets effectively through the exercise of authority and control (planning, guiding and monitoring) over the management of these assets.

Emergency department PREM survey
Survey to measure the patient view of their experience in the emergency department.

Inpatient PREM question set
Survey to capture patients' experience of their hospital stay.

Longitudinal PREM - Questions
Adults receiving care that extends over a long period of time and is seen as a longitudinal capture of a persons experience.

Paediatric Integrated Care Survey (PICS) - PREM
PICS is an instrument that measures the outcome of family-reported experience of integrated care for child health.

Outpatient PREM question set
Survey to capture patients' experiences of outpatient clinics and services.

Paediatric PREM questions
A survey for parents to capture the health experience of their children.

Virtual care PREM question set
Virtual care patient experience real-time question set.

The Patient Reported Measures surveys listed here are available for users within the HOPE platform.

Assessment of Quality of Life – 6 Dimensions (AQoL-6D)

The AQoL-6D questionnaire is designed to measure a person’s self-reported health and wellbeing across 6 areas: Independent Living, Mental Health, Coping, Relationships, Pain, Senses.

Cardiff Wound Impact Schedule

This questionnaire is concerned with the effects that your wound has on your daily life.

Catquest-Short Form 9

Catquest-9SF is a Rasch scaled 9-item questionnaire used to measure activity limitations in daily life due to poor vision because of cataracts. The questionnaire is used to measure patients’ self-assessed visual function before and six months after a cataract extraction to evaluate the benefit of the surgery.

Chronic Obstructive Pulmonary Disease (CAT)

This questionnaire will help you and your healthcare professional measure the impact COPD (Chronic Obstructive Pulmonary Disease) is having on your wellbeing and daily life.

COVID-19 Yorkshire Rehabilitation Scale (C19-YRS)

A survey to capture persistent symptoms of post-acute sequelae of COVID-19 (long COVID).

COVID-19 Yorkshire Rehabilitation Screening Tool

A survey to capture persistent symptoms of post-acute sequelae of COVID-19 (long COVID).

Depression Anxiety Stress Scale-21

The Depression, Anxiety and Stress Scale - 21 Items (DASS-21) is a set of three self-report scales designed to measure the emotional states of depression, anxiety and stress.

Diabetes Distress scale

Diabetes Distress Scale (DDS) questionnaire and scoring sheet.

Health Questionnaire (EQ-5D-5L)

Health Questionnaire EQ-5D-5L for mobility, self-care, usual activities, pain/discomfort and anxiety depression.

Falls Efficacy Scale (FES-I)

The questionnaire is intended to be used in adult population to measure the level of concern about falling during social and physical activities inside and outside the home.

Hip Dysfunction and Osteoarthritis Outcome Score (HOOS)

The hip disability and osteoarthritis outcome score (HOOS) is a questionnaire intended to be used to assess the patient’s opinion about their hip and associated problems.

Integrated Palliative Outcome Scale (IPOS) Renal

The questionnaire is intended for use among people severely affected by diseases such as cancer, respiratory, heart, renal or liver failure, and neurological diseases.

International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form (ICIQ-UI SF)

The ICIQ-UI Short Form is a questionnaire for evaluating the frequency, severity and impact on quality of life (QoL) of urinary incontinence.

Kansas City Cardiomyopathy Questionnaire (KCCQ)

The Kansas City Cardiomyopathy Questionnaire (KCCQ), is a patient-reported outcome instrument, provides a measure of symptoms and physical limitations associated with heart failure

Knee injury and Osteoarthritis Outcome (KOOS)

The Knee Injury and Osteoarthritis Outcome Score (KOOS) is a knee-specific instrument, developed to assess the patients' opinion about their knee and associated problems.

Menopause-Specific Quality of Life Questionnaire (MENQOL)

The MENQOL is a 29 question self-reported questionnaire to assess the impact of four domains of menopausal symptoms.

Oxford Hip Score

Oxford hip score mobility and pain questionnaire.

Peadiatric Quality of Life Inventory (PedsQL)

PedsQL 4.0 Generic Core Scales, self-report quality-of-life questionnaire for children and young people aged 8 years and over. It has 23 questions in the domains of Physical, Emotional, Social, School.

Partners in Health (PIH) Scale

Partners in Health (PIH) survey, available for ad-hoc use in clinical programs where chronic disease management and self-management information forms part of shared decision making.

This survey is used broadly across NSW in integrated models of care.

Patient Reported Outcome Measures Information System (PROMIS-29)

The questionnaire is intended to be used in adult population to measure the level of concern and their overall wellbeing.

Patient Reported Outcomes Measurement Information System-29+2 (PROMIS-29+2)

Quality of life self-reported questionnaire to measure the level of concern and overall wellbeing. The PROMIS 29+2 has the addition of two questions and domain of cognition to the standard PROMIS 29 survey (depression, anxiety, physical function, pain interference, fatigue, sleep disturbance, and the ability to participate in social roles).

Patient Health Questionnaire-4 (PHQ-4) (PROM)

A short, four-question tool to assess a patient’s mood – specifically, symptoms of anxiety and depression. Patients in rehabilitation have often experienced life-altering, sometimes traumatic events, hence mood disturbance is common.

Post COVID-19 Functional Status (PCFS) Scale

An ordinal outcome measure that can be used to track functional status over time.

Problem Areas In Diabetes (PAID) Scale

The Problem Areas In Diabetes (PAID) scale is a well-validated, psychometrically robust questionnaire with 20 items.

PROMIS Pediatric Profile v2.0 – Profile-25

The PROMIS 25 is a quality-of-life questionnaire for children and young people aged 8-18 years. The survey has 25 questions across the domains of Physical Functioning, Anxiety, Depressive Symptoms, Fatigue, Peer Relationships, Pain Interference and Pain Intensity.

St George Respiratory (SGR) Questionnaire

This questionnaire is designed to help us learn much more about how your breathing is troubling you and how it affects your life. We are using it to find out which aspects of your illness cause you most problems, rather than what the doctors and nurses think your problems are.

Wexner Cleveland Clinic Incontinence Score

The Wexner is a brief self-report questionnaire comprising of five questions to assess the type, frequency, extent and impact of anal incontinence and its impact on quality of life.

WOUND-Q©

Three scales; Assessment, Drainage and Smell. WOUND-Q© is validated for patients with all types of chronic wounds in any anatomic location.

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