Spotlight on patient-reported measures

Empowering patients with chronic respiratory issues through exercise

South Western Sydney Local Health District

16 Jul 2024 Reading time approximately


The Pulmonary Rehabilitation Program (PRP) at Liverpool Hospital in South Western Sydney Local Health District (SWSLHD) provides outpatients with exercise training and education, usually delivered over eight weeks. This type of program has been shown to improve outcomes for patients with chronic respiratory diseases.

The PRP is conducted in either a hospital outpatient setting or via telehealth, with either a group or individual exercise program. The program includes a six-minute walking test, paired with the collection of patient-reported measures (PRMs) via Health Outcomes and Patient Experience (HOPE) before the start of the program, on completion and at three months. This includes patient-reported outcome measures (PROMs) that help to inform consultations and care planning.

Surveys include St George’s Respiratory Questionnaire (SGRQ), COPD Assessment Test (CAT) and DASS-21. These tools help to monitor the effectiveness of the program and tailor the exercise and education program to each patient. The PRP has been using HOPE since August 2022, and saw the benefits of a digitally enabled platform service delivery over previous collection of PRMs via paper and/or ad hoc eMR reporting tools.

Prior to HOPE commencement, PRMs collection was embedded into the model of care for the service. Once HOPE was implemented, the service began using all the communication channels available depending on the patient’s capacity to use technology. Since that time:

  • 309 PROMs have been collected and used to guide clinical care.
  • 65% of these PROMs were completed online prior to the consultation.
  • 35% of PROMs were completed face to face in the waiting room or during the consultation.

Patient-reported measures workflow

  • Patient is referred via email, fax or post.

  • Patient receives letter for initial assessment from a RAC physiotherapist.

  • Patient or clinician calls to book in for initial assessment and is invited into the PRMs program, and allocated a survey via HOPE.

  • Patient attends a one-on-one initial assessment either face-to-face or virtually, where the initial PRMs survey is completed and discussed.

  • Patient attends 8 or 16 weeks of exercises.

  • Patient attends one-on-one final assessment via face-to-face or virtually, completing another PRMs survey which is discussed.

  • Optional: patient attends three month post-program review where a follow up survey may be completed.

Consumer story

John*, a 53-year-old male with bronchiectasis, attended the PRP for review.  In his initial review, John scored 50.81 out of 100 in the SGRQ, indicating that his bronchiectasis was significantly impacting his quality of life. John scored 18/40 in the CAT, indicating medium impact of his respiratory symptoms. In the DASS21 he scored 6 for anxiety, 0 for depression and 15 for stress, indicating moderate anxiety and severe stress. He attributed this entirely to his diagnosis of bronchiectasis. Following his initial review, John completed the pulmonary rehab program.

In his final review, John’s SGRQ score was 5.63, a reduction of 45.18 points. His CAT score was 2/40, a reduction of 16 points. On his DASS 21, John scored 1 for anxiety, 0 for depression, and 1 for stress, all of which were now in the normal range.

*Name has been changed for patient privacy.

John’s results demonstrated the benefit of utilising questionnaires to objectively assess and reassess quality of life, perceived symptom burden, depression, anxiety and stress. Objectively, John appeared very well on assessment, but his symptoms were disproportionately affecting him in each of these areas. Being able to review John’s results with him, and have a way to objectively see improvements, was extremely helpful for me, and very encouraging for him. It also made it very easy for me to discharge him from the service after his most recent review, with a plan in place for him to confidently continue with independent self-management of his bronchiectasis.

Zoe Colman, Senior Physiotherapist

Benefits of patient-reported measures

The use of PRMs in HOPE allows for increased PROMs completion, increased patient engagement and understanding of their results, and improved tracking of patient progress over time. It also improves clinician efficiency.

PRMs leads provide the PRP with monthly reports that help to analyse service trends, highlighting:

  • activity in the service, e.g. number of patients registered per month
  • significant trends in data, e.g. improvement or decline from first to second survey
  • potential improvements that can be addressed within the service.

SWSLHD has recently introduced multiple community of practice (CoP) forums for all active users on HOPE and any interested stakeholders. Patient and clinician stories are communicated through local governance systems to promote positive experiences in using PRMs via HOPE.

Helpful tips for other services

The PRMs team should regularly touch base pre and post ‘go-live’, to maintain engagement with staff and provide consistent support for the service.


Engage with and seek support from the facility and service executive, as well as clinical stream managers for sponsorship of the service.


Identify a clinical champion within the service to facilitate and implement the PRMs workflow.

Clinical engagement approach

During the COVID-19 pandemic, the PRP began using the COVID-19 Yorkshire Rehabilitation Scale (C19-YRS) when providing care for people with COVID-19 and long COVID. After using the survey for six months on paper, the senior physiotherapist contacted the PRMs team at the Agency for Clinical Innovation (ACI) for information about using the HOPE platform instead. The ACI PRMs team connected the PRP team with the local PRM program leads who provided the following support.

  • Introduction for the service to the essentials of the HOPE platform and PRMs
  • Scoping and mapping a customised workflow with service manager and senior physiotherapist
  • Delivery of next steps and staff training on the HOPE platform before go-live in August 2022
  • Training for HOPE PRMs reporting one week after go-live
  • Ongoing HOPE data review and touch-base meetings, to review system and service reports.

Organisational structure

Governance

The Strategy and Partnerships Directorate (SAPD) manages the implementation of the PRMs program in SWSLHD and is sponsored by the Director, Strategy and Partnerships. The PRMs program is reported on via two governance streams from the local strategic projects meeting. The Clinical Quality Council is the peak governance body for reporting in SWSLHD. The PRMs Executive Sponsor meeting is the peak governance body for reporting to ACI.

Acknowledgements

We acknowledge and thank the following for their participation in this project:

  • Zoe Colman, Senior Physiotherapist and Acute Team Leader
  • Jeanny Gando, Patient Reported Measures (PRMs Lead)
  • Tobias Niven, PRMs Lead
  • Sam Sio, PRMs Lead
  • Simone Proft, Director, Strategy and Partnerships
  • Rachel Norris, Manager, Strategic Projects and Planning
  • Elise Tcharkhedian, Head of Department, Physiotherapy
  • Gill Hartas, ACI PRMs Project Officer
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