The 2018 Australian Mitochondrial Disease Patient Experience, Expectations and Knowledge (PEEK) Study was a research project developed by the Centre for Community-Driven Research (CCDR) and supported by the Mito Foundation.

The study found specific areas of need in the mitochondrial disease (mito) community. Mito Foundation has used the insights to create new programs and services to improve the lives of people affected by mito.

The study

The PEEK Study was comprehensive. It covered all aspects of the condition. It looked at symptoms, diagnosis, treatment, health care communication, information provision, care and support. It also covered quality of life, future treatment and care expectations.

The 2018 study gathered responses from 50  adult and children with mito and their carers throughout Australia.

This study was undertaken by Mito Foundation in conjunction with the CCDR.  The CCDR has been doing these studies since June 2017. They have studied over 50 condition areas. These studies ask people impacted by a condition to talk about their experience in the health system. They also ask for their views on how to support them and their families better. For the community, reflecting and talking about their experience allows them to have their voice heard. It is an important opportunity.

Click here for the infographic survey summary.

Key findings

The survey found three areas that could improve the quality of life for people impacted by mito. It also made suggestions to help people better manage their health.

First key finding

Mechanisms to support health professional education. Including support to help people explain their condition to new health professionals.

Additional insights

Few heath professionals are aware of mito and many lack knowledge about it. People often see GPs for support in diagnosing and managing mito.

Response from the Mito Foundation

Maybe it's Mito GP education

In 2018, Mito Foundation launched Maybe it's Mito. It is an education campaign aimed at GPs aimed at GPs to help them understand and identify mito. This campaign continues to expand and provide more options for health professionals to learn about mito. A new Managing Mito education module was launched in 2022, and a revised Maybe It's Mito module was launched in 2023.

Second key finding

Case management services to provide holistic care for people impacted by mito and their families. They also ensure care continuity across health services.

Additional insights

Only 6% of respondents reported feeling that they were supported at the time of diagnosis. The remaining 94% felt they had either no support (72%) or some support but not enough (22%). 59% had searched independently for condition management.

Allied health services are an important aspect of managing mito.

Only 18% of respondents had discussed lifestyle changes including diet and exercise. The respondents noted the following as the most common regular activities needed to maintain health:

  • Adequate rest to minimise fatigue (42%)
  • Regular exercise (30%)
  • Eating a healthy/modified diet (20%)

A large proportion of people impacted by mito reported experiencing mental health issues. The study found that 42% of respondents suffer from anxiety and sleep issues, and 41% experience depression. This is much higher than the Australian average of 25% suffering from anxiety and 16% suffering from depression. (Beyond Blue).

 

Response from the Mito Foundation

Telehealth Case Management Nurse

In 2019 we appointed a telehealth nurse as part of the CCDR's Pathways Program. The Pathways Program extends our Helpline service. It advises mito community members on navigating the health system,regardless of location. Our goal is to improve the lives of people impacted by mito and their families.

Allied health campaign

This campaign aimed to increase awareness of the benefits of using allied health services. These services help manage mito symptoms and improve quality of life. The campaign included:

  • Inviting allied health professionals, NDIS coordinators and allied health service providers to speak at upcoming events.
  • The expansion of the Mito Professionals Directory to include more allied health professionals.
  • Mito Foundation focussed on strengthening the knowledge of and access to Exercise Physiologists. We implemented the following initiatives:
  • Established the Australian Mitochondrial Disease Exercise Physiology Network.
  • Developed a dedicated information sheet on "Benefits of Exercise for Mito."
  • Held Mito Connect Calls with mito aware accredited Exercise Physiologists.

Third key finding

Information that empowers people impacted by mito, particularly at diagnosis. Ensuring all information is accessible to the diverse needs of the mito community.

Response from the Mito Foundation

Mito Foundation reviewed its website for health information accessibility. It made the following changes:

Mito Foundation has developed MitoHub, an exclusive information platform tailored for the mito community. This platform offers guidance and support to individuals at any stage of their journey with mito, regardless of location or circumstances.

Summary

  • The 2018 PEEK study by Mito Foundation and CCDR looked at the experiences of people with mito and their carers across Australia.
  • It found that there's a lack of awareness and understanding of mito among health professionals, especially GPs.
  • Many people impacted by mito felt unsupported at the time of diagnosis and had to search independently for condition management.
  • Mental health issues like anxiety and depression are common among those with mito. The occurrence rate is much higher than the Australian average.
  • Mito Foundation responded by launching educational campaigns for GPs, appointing a telehealth nurse, promoting allied health services, and improving accessibility of information through website changes.

Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.

Author(s): Mito Foundation
Version: 1.1
Date updated: 16 May 2024