We solicited feedback from women who had been diagnosed with PCOS using an online survey website—Amazon Mechanical Turk. This allowed us to survey women anonymously while still paying them for their participation. We described that, “this survey is for women with Polycystic Ovary Syndrome (PCOS) who might be interested in a diet and lifestyle program to help improve their health… If you don't have PCOS do not continue.” Thus, this was a self-qualified convenience sample.

Participants provided informed consent online. The research was approved by the University of Michigan Institutional Review Board (HUM00127004).

Participants used a 7-point Likert scale (1=not very interested to 7=very interested) to rate their interest in a diet and lifestyle program to achieve each of 9 health outcomes [18] using each of 7 potential program format options [19,20]. They also rated their willingness to make 6 diet and lifestyle changes [21-25] using a 7-point scale (1=not at all willing to 7=very willing). We measured stress-related eating using the 4-item Eating to Cope subscale of the Palatable Eating Motives Scale (PEMS) [26], which asks people to consider what reasons people give for eating highly palatable foods such as sweets, salty snacks, fast foods, and sugary drinks, rated on a 5-point scale (almost never/never, some of the time, half of the time, most of the time, almost always/always). The 4 prompts include “to forget your worries,” “because it helps you when you feel depressed or nervous,” “to cheer up when you are in a bad mood,” and “to forget about your problems.” We also asked participants 2 open-ended questions about their PCOS and possible programs: “What health concerns do you have related to it?” and “What other aspects of a diet and lifestyle program might be useful?”

Descriptive data are presented in means, standard deviations, and percentages. We dichotomously classified interest responses of at least 6 out of 7 as “interested” and willingness ratings of at least 6 out of 7 as “willing.” We computed associations between selected predictors (body mass index or BMI, age, education, and PEMS) and continuous ratings of interest and willingness. Given the exploratory nature of the study, we tested Pearson correlations using a conservative criterion of P<.01.

Between 53% and 73% of respondents reported interest in a program that would help them to feel more energetic, feel less anxious and depressed, lose weight, prevent a diabetes onset, regulate menstrual periods, and reduce hirsutism (Table 2).

The older the women were, the more interested they were in increasing their energy and preventing diabetes, but the less they were interested in reducing acne and becoming pregnant. The more overweight the women were, the more interested they were in increasing their energy, reducing their anxiety, losing weight, preventing diabetes, and reducing hirsutism. Greater stress eating was associated with interest in reducing anxiety and depression as well as regulating menstrual periods.

We also asked respondents to report any other health concerns they had about PCOS using an open-ended question. These responses included pain, thinning hair, mood swings, and loss of libido.

Between 65% to 81% of respondents reported a willingness to get regular physical activity and sufficient sleep as well as a willingness to practice stress-reduction techniques (Table 2). Only 44%-45% were willing to try each of the 3 diets. Older age was correlated with a willingness to try a low–glycemic index diet and get regular physical activity. Weight, education, and stress eating were not correlated with a willingness to change any of the behaviors.

Between 51% to 54% of respondents were interested in receiving help from a mentor via email, online lessons, or mobile lessons. In contrast, one-fourth or less were interested in receiving mentorship in person, by telephone, or via video chat; and less than one-fifth were interested in in-person lessons. Age was positively associated with interest in being mentored over email and receiving online lessons, and negatively associated with being mentored in person. BMI was positively associated with interest in receiving online lessons. Education and stress eating were not correlated with any program format preferences.

Using an open-ended question, we also asked participants what other aspects of a diet and lifestyle program might be useful. They described other possible features, including getting support from a coach (“just having a person who is there for you”); peers (“I think the support of others going through the same thing could be very meaningful”); or generally anyone supportive (“Constant reassurance would be the most useful tool”). They wanted this support to help keep them accountable to their goals. Participants suggested that the program provide reminders of their goals and rewards for reaching those goals. Some mentioned wanting mobile applications or online or text-based interactions (“Daily goals/reminders through push notifications on a mobile app,” and “I just like accountability without having to talk on the phone or in person. I'm an introvert so I like online message boards, text messages, etc.”) whereas others wanted in-person help (“I would rather just have a checklist of things to do, like a hard copy piece of paper that I can hang on my fridge to help guide my food choices and remind me why those choices are important” and “I like meeting a person in real life because you can see and feel the motivation from them”).