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 identified specific areas of need in the mito community and Mito Foundation has used the insights to develop new programs and services to improve the lives of people affected by mito.

The Study

The PEEK study is a comprehensive study covering all aspects of disease experience from symptoms, diagnosis, treatment, healthcare communication, information provision, care and support, quality of life, future treatment and care expectations.

The 2018 study gathered responses of 50  adult and paediatric mito patients and their carers throughout Australia.

This study was undertaken by Mito Foundation in conjunction with the CCDR.  The Centre has been conducting these studies since June 2017 and has conducted studies of over 50 disease areas. In these studies, patients are given the chance to talk about their experience in the health system and asked their views about what should happen to better support patients and their families. For the patient community, the process of reflecting and talking about their experience provides them with an important opportunity to have their voice heard.

Click here for the infographic survey summary.

Key Findings

The survey identified three areas that could improve the quality of life for mito patients and their ability to better manage their health.

#1: Mechanisms to support health professional education, including those that support patients in explaining their condition to new health professionals that they may encounter

#2: Case management services to provide holistic management of mitochondrial disease to patient and their families and ensure continuity of care across health services

#3: Information that empowers patients, particularly at diagnosis; and ensure that all information is available in formats that are appropriate to those with visual and hearing impairments

Further Findings from the Mito Foundation

The Mito Foundation will implement action based on the following:

ONE: A large proportion of patients with mitochondrial disease were experiencing mental health issues. The study found that 42 per cent of respondents were suffering from anxiety and sleep issues; and 41 per cent were experiencing depression. This is significantly higher than the Australian national average of 16 per cent suffering from depression and 25 per cent suffering anxiety (Beyond Blue)

TWO: At the time of diagnosis, only 6 per cent of patients felt they were supported. The other 94 per cent felt they had either no support (72 per cent) or some support but not enough (22 per cent). Fifty-nine per cent of patients searched independently for disease management.

THREE: Only 18 per cent of participants had discussions about 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 per cent)
  • Regular exercise (30 per cent)
  • Eating a healthy/modified diet (20 per cent)

In response to the findings, the Mito Foundation has developed the following initiatives:

Telehealth Case Management Nurse

We are delighted to have secured funding for a Telehealth Case Management Nurse as part of the CCDR’s Patient Pathways Program. The Patient Pathways Program will extend our existing Helpline service, providing case management for our mito community, regardless of location. This development will deliver on our strategic priority to improve the lives of mito patients and their families.

Mental Health Awareness and Support Campaign

This campaign will raise awareness of the high prevalence of mental illness, and present ways it can be addressed. The foundation has implemented the following initiatives:
  • A fact sheet exploring the “Psychological Impacts of Mito” plus Palliative Care fact sheets for adults, and children. View here.
  • Mito Connect Calls with a focus on mental health, most recently grief
  • Information Days with dedicated mental health professionals who have provided expert advice. Learn more here


Future aspects of this campaign are:

  • A mental health support video, featuring stories of members of the community
  • A network of medical professionals who understand mito and its relationship with mental health
  • Development of ongoing tools and resources to help manage mental health concerns
  • A commitment to promoting awareness of mental health illness as a symptom of mito, rather than an unrelated issue.

Allied Health Awareness Campaign

This campaign will increase the awareness of the benefits of accessing allied health services for managing mito symptoms and improving quality of life. The foundation implemented the following initiatives:

  • Dedicated fact sheet on Benefits of Exercise for Mito.
  • Invited Nancy Van Doorn, Accredited Exercise Physiologist to speak about the benefits of exercise for mito on February Connect Call. View summary here
  • Invited Allied Health professionals, NDIS coordinators and Allied Health service providers to speak at upcoming Information Days. Learn more here
  • Established The Australian Mitochondrial Disease Exercise Physiology Network. Find out more here

Future aspects of this campaign are:

  • Establish further networks of relevant allied health professionals to assist mito patients
  • Create a video series highlighting the benefits of different allied health professionals for improving mito symptoms and quality of life for people with mito

Patient Self-Advocacy and Self-Management Project

Effective self-management and self-advocacy support have been proven to help people and their families cope with the physical, social and psychological challenges of living with and managing a chronic condition such as mito.

Wendy Benson from Patients Association of Australia discussed patient advocacy during the March Mito Connect Call.

Future aspects of this campaign are:

A pilot program providing self-management and self-advocacy training to a small number of mito community members to improve their health literacy and empower them to manage their condition. It will provide education on medication management, vision and goal setting, building health plans and mitochondrial disease management

These are the first of initiatives many to address the findings from the PEEK study.