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Breast cancer is the most common cancer among women globally. Recovery from breast cancer treatment can be mentally and physically challenging. SMS text message programs offer a novel way to provide health information and support, but few programs are co-designed with consumer representatives.
This study aims to report the procedures and outcomes of a co-design process of a lifestyle-focused SMS text message program to support women’s mental and physical health after breast cancer treatment.
We followed an iterative mixed methods two-step process: (1) co-design workshop with consumers and health professionals and researchers to draft text messages and (2) evaluation of message content, which was scored (5-point Likert scale; 1=strongly disagree to 5=strongly agree) for ease of understanding, usefulness, and appropriateness, and readability (Flesch-Kincaid score). Additional free-text responses and semistructured interviews were coded into themes. Messages were edited or deleted based on the evaluations, with consumers’ evaluations prioritized.
In step 1, co-designed text messages (N=189) were semipersonalized, and the main content themes were (1) physical activity and healthy eating, (2) medications and side effects, (3) mental health, and (4) general breast cancer information. In step 2, consumers (n=14) and health professionals and researchers (n=14) provided 870 reviews of 189 messages and found that most messages were easy to understand (799/870, 91.8%), useful (746/870, 85.7%), and appropriate (732/870, 84.1%). However, consumers rated 50 messages differently from health professionals and researchers. On the basis of evaluations, 37.6% (71/189) of messages were deleted, 36.5% (69/189) were edited, and 12 new messages related to fatigue, self-care, and cognition were created. The final 130 text messages had a mean 7.12 (SD 2.8) Flesch-Kincaid grade level and 68.9 (SD 15.5) ease-of-reading score, which represents
Co-designing and evaluating a bank of evidence-based mental and physical health-themed text messages with breast cancer survivors, health professionals, and researchers was feasible and resulted in a bank of 130 text messages evaluated highly by participants. Some consumer evaluations differed from health professionals and researchers, supporting the importance of co-design.
Breast cancer is the most commonly diagnosed cancer among women globally [
Co-design is the process by which service providers and consumers collaborate to develop meaningful and creative solutions. The benefits of co-design include improved services, provider-consumer interactions, and consumer engagement and experiences [
Mobile health (
This study aims to report the procedures and outcomes of a co-design process of a bank of evidence-based text messages to support women’s mental and physical health after breast cancer treatment. The co-designers were women who completed active breast cancer treatment (consumers and citizen collaborators), health professionals, and researchers. We hypothesize that consumers and citizen collaborators would add value by providing different inputs and evaluations regarding lived experience with breast cancer and the health care system compared with health professionals and researchers.
A two-step mixed methods process [
Study design, including a citizen collaborator throughout.
The aim of step 1 was to work with consumer representatives, a citizen collaborator, health professionals, and researchers to develop the SMS text message program structure, content themes, and draft text message content.
Consumers were included if they had completed active breast cancer treatment (surgery, chemotherapy, or radiotherapy) within the past 5 years and did not have distant metastatic disease. Health professionals and researchers were eligible to participate if they were practicing health professionals (eg, medicine, allied health, or nursing) or active researchers with expertise in breast cancer or text message interventions. Consumers (n=3) from a local volunteer association, health professionals (n=8) from WBCI, and researchers (n=5) from 2 universities in Sydney, Australia, were invited via email to participate in a two-hour workshop to develop the program structure and message content. Those who agreed to attend were provided with further instructions regarding the workshop location. A citizen collaborator also reviewed the program structure and developed the message content. The citizen collaborator was aged 29 years, a White woman with lived experience with breast lumpectomy surgery, chemotherapy, radiotherapy, and 1 year of taking endocrine therapy tablets. The citizen collaborator assisted in developing the research idea and provided ongoing feedback throughout the program design.
A two-hour interactive workshop was held on June 5, 2018. The workshop included a 15-minute presentation and semistructured discussion topics, such as the number of text messages delivered per week, if the delivery was one-way (no replies) or two-way (replies allowed), and message content themes. Time was also allocated to draft text message content. After the workshop, the health professionals drafted additional messages. The program structure and message content were discussed with the citizen collaborator before and after the workshop.
The text messages were developed based on the behavior change techniques taxonomy by Abraham and Michie [
Example of draft text message content and themes with corresponding behavior change techniques.
Behavior change technique | Example text message content | Message theme |
Provide information about behavior-health link (IMBa) | Fibre in fruit, veggies and wholegrain foods helps you feel full for longer, can improve blood sugars & lower cholesterol - so make sure there’s plenty of fibre in your diet! | Nutrition |
Provide information on consequences (TRAb, TPBc, SCogTd, or IMB) | Research shows that consistent physical activity can help reduce antihormonal (endocrine) tablet side effects - so try to get moving every day but make sure to schedule time to rest! | Medication adherence and side effects |
Prompt intention formation (TRA, TPB, SCogT, or IMB) | Sometimes we can do exercise without noticing - challenge yourself to park the car further away from the shops or your work so you get a few extra steps! | Physical activity |
Prompt barrier identification (SCogT) | Side effects are the main reason why women stop taking their antihormonal (endocrine) tablets - Remember, [pref_name]e, your doctor has prescribed this medication to benefit your health and can help you if side effects are a problem. | Medication adherence or side effects |
Provide general encouragement (SCogT) | Hi [pref_name], you are halfway through the EMPOWER-SMSf program – it’s wonderful that you’re taking a few moments each week to focus on your health and wellbeing - keep it up! | General |
Set graded tasks (SCogT) | Sometimes getting started is the hardest part, [pref_name] - it can be easier to begin exercise at low intensity (walking, stretching) and gradually increase to moderate intensity (faster breathing rate but can still have a conversation) | Physical activity |
Provide instruction (SCogT) | Physical activity is essential for your recovery - World Health Organization recommends at least 30mins of moderate-intensity activity 5days/week - click here for ideas: [insert link here] | Physical activity |
Model or demonstrate the behavior (SCogT) | Some women experience tightness or restricted movement in their shoulder long after treatments have finished - if this is you, the BCIg shoulder care video may help: [insert link here] | Physical activity |
Prompt specific goal setting (CTh) | Hi [pref_name], relaxation and self-care are important - try making a list of 3 things that help you relax so you can include them into your week | Social or emotional well-being |
Prompt self-monitoring of behavior | Do you have trouble sleeping? Consider keeping a sleep diary, it may help you understand what’s impacting your sleep, like TV, lights or stress - see an example here: [insert link here] | General |
Provide contingent rewards (OCi) | Did you take your antihormonal (endocrine) tablet today, [pref_name]? If yes, well done! If not, don’t worry, just take it as soon as you remember - if it’s nearly time to take your next tablet, do not take two at the same time - 1 per day is enough | Medication adherence or side effects |
Teach to use prompts or cues (OC) | Usually, people serve too much food on a large plate - reducing your plate size can help limit portion sizes and avoid overeating! - [centre_name] | Nutrition |
Prompt practice (OC) | Writing a list of 3 things you’re grateful for each week may change the way you feel – it’s also a nice way to reflect - [centre_name] | Social or emotional well-being |
Provide opportunities for social comparison (SCompT) | Hi [pref_name], having a hard time talking about your breast cancer? Breast Cancer Network Australia has a great web-based forum, where you can read women’s questions and concerns, and you can pose questions, if you want. Here’s the link: onlinenetwork.bcna.org.au | Social or emotional well-being |
Plan social support or social change (social support theories) | Exercising with a friend can be fun & you can motivate each other - grab a friend and get moving or meet some new friends at a local walking group, find one near you here: [insert link here] | Physical activity |
Prompt self-talk | Practicing positive self-talk is a good way to keep your mind healthy and improve your mood - not sure where to start? Click for more information: [insert link here] | Social or emotional well-being |
Relapse prevention | Making small changes can make a big difference when it comes to healthy eating - at restaurants look for simple switches like a baked potato instead of chips. Read more tips here: [insert link here] | Nutrition |
Stress management (stress theories) | Mindfulness meditation can help to manage stress and improve mood by focusing on breathing and relaxation techniques - if you’d like to learn more, click here: [insert link here] | Social or emotional well-being |
Motivational interviewing | Remember to be kind to yourself, [pref_name]! Think of 3 things you’re thankful that your body can do | General |
Time management | Treat yourself to some |
Social or emotional well-being |
aIMB: information-motivation-behavioral skills model.
bTRA: theory of reasoned action.
cTPB: theory of planned behavior.
dSCogT: social cognitive theory.
e[pref_name] is a place holder for the auto-population of the participant’s preferred name.
fEMPOWER-SMS: A text message intervention to support women’s mental and physical health after breast cancer treatment.
gBCI: breast cancer institute.
hCT: control theory.
iOC: operant conditioning.
Medical content was based on personal experiences of health professionals and confirmed using Cancer Australia’s national guidelines for primary prevention of cancer [
The authors reviewed all messages (AS, JR, SRP, and RR) before text message evaluation and refinement (step 2). The reasons for deletions were recorded.
The aim of step 2 was for consumers, a citizen collaborator, health professionals, and researchers to evaluate the quality of the text message content, refine the messages based on feedback, and evaluate the messages’ ease of reading.
Consumers (n=16), the citizen collaborator, and health professionals and researchers (n=14) from the WBCI and 2 universities were invited to participate. Consumers were recruited during a medical clinic for one-year postsurgery follow-up appointments. Consumers were approached by their physician if they were an adult (>18 years) woman and completed active breast cancer treatment within the past 3 years (could still be taking endocrine therapy treatment) and were able to provide written informed consent. Consumers were not approached if they had metastatic breast cancer or insufficient English skills to provide informed consent or read and evaluate text messages.
Health professionals and researchers were eligible to participate if they were practicing health professionals (eg, medicine, allied health, or nursing) or active researchers with expertise in breast cancer or text message interventions. Health professionals and researchers known to the research team were invited to participate via email and provided electronic consent via a web-based database.
A combination of feedback surveys and semistructured interviews were conducted to evaluate the message content. For the feedback surveys, each participant provided basic demographic information regarding age, sex, and expertise (lived experience or health professional or researcher), and then evaluated 32 draft text messages (maximum 15 min) presented as 1 to 2 sentences on paper in a private room (consumers) or via a password-protected web-based database (health professionals or researchers). Owing to time constraints, one health professional evaluated only 16 messages. Message content related to medication adherence and side effects were reviewed by consumers who reported taking endocrine therapy tablets previously or at the time of the study.
The feedback survey contained 4 questions for each draft text message, with three 5-point Likert scale (1=strongly disagree to 5=strongly agree) questions: “This message was easy to understand;” “The information provided in this message is useful;” “This message is appropriate for women with breast cancer” and one free-text response question, “Do you have any suggestions to improve this message?” The Likert scale questions were summarized by the number and percentage of consumers’ or health professionals and researchers’ evaluations that
Free-text consumer and health professional or researcher evaluations were collated for each message. The citizen collaborator evaluated all messages via free-text feedback. After completing the feedback survey, consumers were invited to brief (10-15 min) semistructured interviews that explored participants’ most and least liked text messages, suggestions for additional message themes, the appropriateness of the language within the messages (too complicated vs too simple), and whether a SMS text message program would have been helpful during the transition from hospital care to health self-management. The interviews were audio-recorded and transcribed verbatim. The free-text feedback and interview transcripts were open-coded using inductive thematic content analysis in NVivo 11 (QSR International) by 2 independent parallel coders (AS and RR). The researchers discussed codes until they reached an agreement on themes. The feedback survey results and interviews were used to inform message refinement (edits, deletions, or creation of new message content).
All messages were evaluated for readability using the Flesch-Kincaid ease-of-reading score and grade level, which are validated scores of content readability based on the number of words per sentence and syllables per word [
Consumers (n=2) and health professionals and researchers (n=4; health psychologist, specialist breast cancer surgeon, physiotherapist and digital health researcher, and psychology researcher) attended the workshop. The group decided that the program would be one-way (no replies) as consumers did not want to feel pressure to reply. Our team’s previous research also showed that one-way messaging was well-liked by patients with heart disease and helped them feel supported [
A total of 274 messages were co-designed; 157 messages were drafted during the workshop, and 117 were created by the authors, including the citizen collaborator, after the workshop. The citizen collaborator’s content subtheme ideas included posttreatment financial support, difficulties returning to work (fatigue, treatment side effects, or cognitive load), and practical solutions for medication side effects. After revision of the messages by authors AS, JR, SRP, and RR, 189 co-designed messages remained for evaluation in step 2. Reasons for deletion included repetitive ideas or content (65/274, 24%), negative message tone (11/274, 4%), and message content not being relevant to breast cancer survivors (9/274, 4%)
Consumers (14/16, 87.5%) and health professionals or researchers (14/14, 100%) completed the message evaluation; 2 consumers (2/16, 12.5%) did not return their surveys and were not included in the analyses. The mean age of consumers was 60 (SD 10) years, and the mean age of health professionals or researchers was 46 (SD 8) years. Most participants were White (12/14, 86% of consumers; 12/14, 86% of health professionals or researchers) women (14/14, 100% of consumers; 12/14, 86% of health professionals or researchers).
The 189 co-designed text messages were evaluated 870 times: 443 times by consumers, and 427 times by health professionals or researchers (mean 2.34 consumer and 2.26 health professional evaluations per message). Overall, participants
Example text messages and decisions based on discrepant consumers’ versus health professionals and researchers’ mean ratings (out of 15) and supporting feedback quotes.
Message themes and subthemes | Decision | ||||
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“Hi [preferred name], returning to work can be difficult - some women have found it helpful to openly discussing their needs and working arrangements with their managers so that everyone is on the same page” |
Consumers’ mean rating 10/15 (67%): “Work were not helpful and sick leave all used up - refused flexible work and had to feel guilty. Head of [Human Resources] however was supportive, not line manager and above” (female, age 65 years) Health professional and researchers’ mean rating 12/15 (80%): “wording change after managers ‘discussing’ to discuss eg: ‘so a plan can be made’ or just stop after managers” (female, age 62 years) |
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“Did you know that the Breast Cancer Network Australia provides a variety of kits, booklets and fact sheets where you can find more information? Check it out: [insert link]” |
Consumers’ mean rating 13.5/15 (90%): “helpful” (female, age 65 years) Health professionals and researchers’ mean rating 11/15 (73%): “All patients with breast cancer get this information at the time of their diagnosis” (female, age 54 years) |
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“If you are experiencing hot flushes at night, give a cool shower right before bed a go and see if that helps!” |
Consumers’ mean rating 12/15 (80%): “aware this is a side effect especially of hormonal treatment” (female, age 65 years) Health professionals and researchers’ mean rating 10/15 (67%): “‘Have a cold shower’ I’m not sure that cold showers will be popular??” (Male, age 51 years); “‘Wording not good – suggest’...taking a cool shower just before going to bed might help’ or something similar” (female, age 54 years) |
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“Apps, watches or other step counters can help with tracking your steps each day - The World Health Organisation recommends 10,000 steps per day. How many do you usually do [preferred name]?” |
Consumers’ mean rating 11.5/15 (77%): “While the message is clear, I don’t think I need to receive it. Messages like these are not personal and supportive. Just that not everyone has apps, younger generation like my daughter does, with her fitbit she tracks steps. I don’t have one. A message like 30 mins (walking) of exercise 3-5x a week is recommended, how often do you exercise” (female, age 45 years) Health professionals and researchers’ mean rating 15/15 (100%): “should there be a link [or] reasoning why useful for [Breast Cancer Institute] patient” (female, age 38 years) |
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Deleted. Consumer’s suggestion is referring to another message she evaluated, which is included in the final message bank. |
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“Hey [preferred name], some people eat too much of a good thing. As a general rule - it's good to keep portion sizes around the size of your fist” |
Consumers’ mean rating 13.5/15 (90%): “Good information” (female, age 50 years) Health professional and researchers’ mean rating 11.5/15 (77%): “Could delete. Fruit and veg portions is larger than fist” (female, age 31 years) |
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“Hi [preferred name], setting aside time for yourself in your diary or on your phone can make it easier to stick to - whether it’s a walk, yoga or just reading a good book, treat yourself to some 'you' time” |
Consumers’ mean rating 12.33/15 (82%): “resources need to be more available. [they are] not always in a prominent place. These resources would have helped - had to really search.” (female, age 65 years) Health professionals and researchers’ mean rating 10/15 (67%): “This message seems too busy. I would simplify. Maybe make into 2 messages as you are tapping into 2 different ideas: regular practice and ‘me time’. I would separate.” (female, age 55 years) |
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Oral interview feedback from consumers (n=3) and free-text feedback from the citizen collaborator revealed three important themes for consideration in message refinement: prevention of loneliness, impacts of treatment and medication side effects, and motivation to exercise. Example quotes for each theme are presented in
The messages [that] give information, give some encouragement because after treatment, I stayed home and I felt very lonely.
I was slowly recuperating pretty good, but I’m still not over it yet, it’s been over 12 months...Tiredness, sometimes I can’t do housework.
Fatigue was huge. And it would always hit you sort of 2, 3 o’clock in the afternoon.
have an exercise buddy or just a friend that you meet to go and have a walk with or walk your dog...just go I’m meeting so and so and we’re going to do this today, and it’s like keeping an appointment
[My smartwatch] counted the amount of steps I did every day...so it would tell me how many kilometres I had done. It gives you this sense of achievement at the end of the week.
One thing you could add is a reminder that finding time to exercise and eat healthy can be really hard when you struggle with fatigue, but that it will actually help give you more energy.
after operation...it’s been 3 years...but still pain and the scar is hard. When I’m moving it feels hard [tight]. The doctor said more exercises, stretch and do some physical therapy.
On the basis of the feedback (Likert scale, free-text questions, and interviews), 36.5% (69/189) of messages were edited, 37.6% (71/189) were deleted (score <12 or repetitive concept), and 12 new messages were created; 130 evidence-based, co-designed messages remained: 55.4% (72/130) of messages relating to the theme of physical activity and healthy eating, 29.2% (38/130) regarding social and emotional well-being, 32.3% (42/130) regarding general breast cancer information, and 28.5% (37/130) regarding medication adherence and side effects. Subthemes from step 1, such as financial support and practical solutions for side effects (fatigue, hot flushes, and cognitive load), were included within these four broader themes.
The 130 text messages had a mean Flesch-Kincaid grade level of 7.12 (SD 2.84) and an ease-of-reading score of 68.92 (SD 15.46), representing
This study reports the outcomes of a co-design process [
SMS text message interventions are becoming increasingly popular as mHealth strategies [
This study also provides a framework for developing and implementing SMS text message programs with consumers’ voices at the forefront. Previous studies have developed and refined messages with health professionals, and consumers reviewed the edited messages [
The proliferation of breast cancer survivors is a testament to improvement in treatment [
Although the study provides new evidence for the co-design of SMS text message interventions for breast cancer survivors, it has some limitations. The number of consumers was relatively small, and most were White, which may not be generalizable to the priorities of the wider breast cancer community. However, cultural considerations, such as alcohol intake and cooking styles, were considered in the message evaluations and refinements. Consumers were recruited from WBCI, which services a large (about 2.3 million) multilingual and socioeconomically diverse population in Western Sydney. Half (49%) of the Western Sydney population speak a non-English language at home, including 8.5% who reported speaking English
Consumers, a citizen collaborator, health professionals, and researchers successfully co-designed a set of 130 evidence-based lifestyle-focused text messages to support women’s health after breast cancer treatment. The co-design process resulted in an improved final bank of text messages and highlighted the importance of involving consumers as equal co-designers. This process can easily be replicated to develop SMS text message interventions for other patient populations.
mobile health
Westmead Breast Cancer Institute
The authors thank the breast cancer consumer representatives from the Breast Cancer Network Australia and WBCI and all staff and patients at the WBCI for their involvement in the study. A special thanks to the consumer representatives Christine Mitchell and Fiona Neill. Thanks to the Westmead Applied Research Center staff members for their research support, especially Caroline Wu. AS had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
No project funding was received for this study, but several team members were supported by scholarships and fellowships. AS is supported by the University of Sydney’s Research Training Program Scholarship and the Westmead Applied Research Center Supplementary Postgraduate Research Scholarship in Breast Cancer. SRP is supported by a National Health and Medical Research Council Early Career Fellowship
AS, JR, SRP, EE, and MH contributed to the study conception and design. AS and RR supported the details of recruitment, data collection, and analyses of the results. AS, JR, SRP, and RR drafted the manuscript. All authors supported the text message development, intervention design, commented on previous versions of the manuscript and have read and approved the final manuscript.
None declared.