Using text messages to support peoples physical and mental health after breast cancer treatment: the EMPOWER-SMS randomised controlled trial

Abstract

The EMPOWER-SMS pilot clinical trial was the first study of a consumer co-designed text message intervention to support breast cancer survivors’ health and wellbeing. For 6 months, participants received 4 text messages per week regarding physical activity, diet, endocrine therapy medication adherence, managing side effects, mental health, and weblinks to resources. Compared to usual care, delivering lifestyle support directly to survivors' mobile phones via an automated text message intervention improved medication adherence and motivated healthy lifestyle behaviour change.

Introduction

Dr Anna Singleton is an emerging researcher in the development and delivery of automated lifestyle-focused text message programs to improve patients’ health and lifestyle outcomes. Her broader team led by Prof Julie Redfern and Prof Clara Chow has conducted extensive randomized controlled trials of more than 10,000 chronic disease patients (heart, lung, diabetes) found lifestyle-focused text message interventions cost-saving for the health system and effective for improving lifestyle outcomes (physical activity, diet, smoking cessation) and clinical outcomes (blood pressure, cholesterol levels) compared to usual care. Anna’s PhD expanded these findings by leading the pilot EMPOWER-SMS randomized controlled trial to support breast cancer survivors’ health and wellbeing. Anna co-designed the EMPOWER-SMS program with consumer representatives from the Breast Cancer Network Australia and clinicians/researchers including Professor Elisabeth Elder, a specialist breast cancer surgeon from the Westmead Breast Cancer Institute. Anna, Elisabeth and consumer representatives actively collaborated throughout the study on the design and evaluation of text-messages, study design, and authoring papers. This collaboration ensured the program successfully met the needs of breast cancer survivors. Anna has received several awards for her research, including the 2022 Consumer Involvement Award from the Australian Clinical Trial Alliance’s Trial of the Year Awards. She is currently leading the national implementation of EMPOWER-SMS into usual care to improve breast cancer survivors' health.

Who should benefit?

Breast cancer is the most globally prevalent cancer, with 7.8 million women reported to have survived breast cancer treatment in the past 5 years. Medical advancements mean more people are living longer after breast cancer treatment – in Australia, there are now 20,000 breast cancer survivors per year. This growing population face significant ongoing health challenges, including side effects such as fatigue and lower quality of life compared to people without cancer.

Survivors’ long-term physical and mental health challenges cost the Australian Government more than $500M annually. Survivorship guidelines advise attending healthy lifestyle programs including exercise, diet, medication adherence, and survivorship psychoeducation which can improve quality of life and reduce risks of cancer recurrence and premature death. However, accessible lifestyle support is limited, especially for survivors living in rural or regional Australia or in low socio-economic areas. Further, less than 50% of survivors are informed about programs and cannot afford the cost or time of in-person programs. It is therefore critical to find a scalable strategy for facilitating access to health programs and supporting cancer survivors' recovery.

Mobile phone services reach 99% of the Australian population, making text message-based interventions an accessible, low-cost, and scalable opportunity to support breast cancer survivors. Delivering evidence-based information through text-messages can motivate healthy behaviour change. EMPOWER-SMS aims to ‘close the gap’ in cancer care by empowering person-centered care, reducing health service inequities, and improving quality of life as supported by the WHO Global Breast Cancer Initiative strategies.

The EMPOWER-SMS pilot clinical trial was developed to support breast cancer survivors’ health after finishing active treatment - chemotherapy and/or radiation therapy and/or surgery - within the past 1.5 years. In the pilot study, Anna and Rebecca Raeside (research assistant, now PhD candidate) recruited 160 participants from a public breast cancer institute in a multicultural Western Sydney suburb. 47% of participants identified as Caucasian, followed by participants with ancestries from the Pacific Islands, India, Southeast Asia and the Middle East.

In 2020, EMPOWER-SMS was tested in a national implementation pilot, overcoming access barriers like cost and COVID-19 lockdowns to provide support for Australian breast cancer survivors. 844 participants were recruited from diverse ethnic, cultural, and socioeconomic backgrounds, including Aboriginal and Torres Strait Islander people. 31% of participants lived regional, rural or remote areas, with 12% lived in the most disadvantaged areas of Australia. This study provided evidence of the feasibility and scalability of national implementation of EMPOWER-SMS to enhance equitable support for all breast cancer survivors.

Engagement

The EMPOWER-SMS program is founded on consumer involvement, partnership, and leadership across all research stages. Led by Dr Anna Singleton, the research involved more than 38 consumers and clinicians as investigators for the project. Consumer representatives were paid for their involvement as members of the Steering Committee, where they authored papers, co-created the study’s design, engaged in feedback, supported interpretation of results, and co-created materials such as videos, lay summaries, and media content.

Anna’s team engaged with clinicians and breast cancer survivors in the development and review of text messages, rating the messages on their utility and suitability. Interestingly, there was disparity between health professionals’ and consumers’ feedback, highlighting the importance of engaging with consumers to enhance the utility of health programs. Of the 64 clinical trial participants who provided feedback, 100% found the text messages easy to understand and 91% found the program useful. The national pilot study with 844 participants found high acceptability and a 93% retention rate among socioeconomically and ethnically diverse participants.

The pilot research studies have led to further insights to meet the needs of breast cancer survivors. Feedback suggested increased personalization of text message content for cancer patients at different stages of treatment, as well as integrating the program into usual care to make it freely available for all breast cancer survivors.

The EMPOWER-SMS program helped participants feel supported and less alone, especially during the COVID-19 lockdowns. Other contributing factors to participant engagement included the motivation and reassurance for health self-management, as well as receiving web links to trustworthy information and resources. Anna has built an extensive partnership with consumers, clinicians, and stakeholders such as Breast Cancer Network Australia and Westmead Breast Cancer Institute. Ongoing collaboration with these partners will support project delivery, offer capacity building for the research team, and facilitate the scaling of EMPOWER-SMS Australia-wide.

Research

The first 2 years after cancer treatment are critical for mental and physical health recovery. The Clinical Oncology Society of Australia urgently call for implementation of lifestyle support for all cancer survivors. Only 37% of breast cancer survivors currently meet physical activity guidelines, compared to 50% of Australian adults without cancer. Less than 1% adhere to both physical activity and dietary guidelines. Qualitative data suggest access to post-treatment health information and healthy lifestyle support are among breast cancer survivors’ top priorities for service improvement.

Digital health interventions can be an effective and acceptable way for improving breast cancer survivors’ health outcomes. Anna published the largest systematic review with meta-analyses on this topic, finding a significant effect of digital health interventions (websites/apps) on quality of life, self-efficacy (self-confidence), distress and fatigue compared to usual care for breast cancer survivors worldwide. However, the review found no text message interventions: a major gap given the low cost and easy accessibility of text messages. Anna therefore developed the first co-designed text message intervention to support breast cancer survivors.

The EMPOWER-SMS program effectively improved medication adherence compared to usual care and was useful and motivating for survivors’ health. Participant feedback provided suggestions to improve service delivery and has informed the future implementation of EMPOWER-SMS into usual care Australia-wide. It also highlights opportunity to benefit survivors internationally where there may be limited healthcare resources, however this is yet to be evaluated. The EMPOWER-SMS program was low-cost (£11pp for 6 months) and required minimal staff time, highlighting the potential to provide scalable support without increasing the burden on the healthcare workforce.