Expectations regarding eHealth among women with stress urinary incontinence

Participants were recruited from two general practices in different cities in the eastern part of The Netherlands. Two general practitioners (GPs) purposively selected patients with SUI registered in their electronic medical records, with variability in age, severity of incontinence, education, and duration of symptoms. We defined the following inclusion criteria: female patients, age ≥ 18 years, experiencing predominantly SUI, a history of asking for and receiving help regarding SUI at least once, no history of serious illness, and able to communicate in Dutch. The patients were contacted by their own GP by telephone. The GPs gave a full explanation of the study and asked patients for their approval to pass on their contact details to the researcher (CV). Patients were then contacted by the researcher by telephone to arrange an appointment. Prior to the interviews, all participants were provided with written information, and the interviewer gave a brief explanation about the design of the eHealth intervention. Women were informed that eHealth was defined as therapy via the Internet with home-based PFMT. They were also told there would be no face-to-face contact with a therapist during intervention but that digital communication was possible. All women gave their informed consent.

Semistructured, face-to-face interviews were held, and background data were collected. The validated Severity Index [20] and the Incontinence Impact Questionnaire (IIQ) [21] were used to assess incontinence severity and impact on QoL, respectively. Severity Index scores corresponded with different levels of incontinence severity: 1–2 = slight; 3–5 = moderate; 6–8 = severe. The items of the IIQ short form were divided into the following categories: physical activity (items 1 and 2); travel (items 3 and 4); social/relationships (item 5); emotional health (items 6 and 7). The total score on the IIQ ranged from 0 to 100, with a higher score corresponding to a higher impact on QoL.

Interviews were conducted in July 2016 by a trained medical student (CV) who had no relation with the participants. The interview guide was based on the literature and on the authors’ expertise (DT and ALJ) (Appendix, Table 2). The following topics were addressed: experiences with treatment for SUI; reasons for unsuccessful treatment; expectations regarding an eHealth intervention for SUI; personal support during an eHealth intervention; general preferences for SUI treatment. Depending on the participants’ preference, interviews were held either at their home or at the general practice. Before interviews were held, two pilot interviews were conducted. During the interviews, no field notes were made. Interviews lasted between 20 and 40 min, and no repeat interviews were carried out.

Interviews were audio-recorded and transcribed verbatim anonymously. Participants were not asked to comment on the transcripts. The grounded-theory approach was used to convert raw data (transcripts) into structured themes that build a theory about expectations women have about eHealth for SUI. The grounded-theory approach is an often-used method to study specific behavior or a specific idea in a population [22]. Two researchers (CV and LS) independently labeled the interview fragments with codes and compared the codes afterward. They used the Atlas.ti (version 7.1.5.) software for this process. After discussion had taken place, the codes were gradually merged into broader categories. A third researcher (LF) read all transcripts to familiarize herself with them, as well as codes and categories. Overarching themes then emerged from the existing categories through intensive discussion with the research committee (all authors). During this process, the researcher (LF) repeatedly compared conceptual themes with transcripts to check whether they would embrace all our data. Finally, agreement was reached on the final themes. We performed no member checking. Though data saturation was reached after 11 interviews, two more interviews were conducted, as we found it ethically objectionable to cancel these scheduled interviews. Important findings in the text are illustrated with quotes from participants, who are identified by identification number, age, and incontinence severity (slight, moderate, or severe); few, several, many, most, or all indicate that 1–3, 4–6, 7–9, 10–12, or 13 participants, respectively, shared an opinion.

The Research Ethics Committee of the Radboud University Medical Center, Nijmegen, approved this study (CMO region Arnhem and Nijmegen, The Netherlands, registration number 2016-2625).

A predominant view among interviewees was their need for personal contact during therapy for SUI, and the absence of personal contact in eHealth as a stand-alone therapy caused several women to reject it. Women appreciated the contact they had with their GP, physiotherapist, or nurse practitioner when they sought help for the first time. After they had overcome barriers to seeking help, they felt at ease and trusted their healthcare provider because he or she discussed SUI openly with them and normalized the problem.

“I was glad that I went to see my GP; she made me feel at ease and she gave me the feeling that I was not exaggerating things by coming to see her.” (ID2, 51 years, moderate)

During eHealth therapy, most women greatly emphasized the importance of the possibility of contacting a professional if there were any problems. Several women stressed the necessity of this being one and the same person, or at least someone they knew and trusted. The preferred response time from this person during an eHealth intervention was 1 day at most, whereas one woman preferred 24/7 availability, although she knew this would be too costly. Although several women mentioned e-mail, chat, or telephone as possible ways of communication, most women preferred face-to-face contact, because they found communication easier if things could be discussed back and forth. Several women also expressed their resistance to eHealth, because they felt they were computer illiterate, feared being hacked, or resented the digitization of society in general.

“You’d better go to someone and tell them about things; that’s easier than writing down a whole story.’”(ID13, 74 years, severe)

“I don’t feel confident with that thing, the computer, and with all the technology these days. [...] I prefer not to do it [start with eHealth].” (ID1, 68 years, moderate)

Several women thought that a healthcare professional was also needed to provide support during eHealth treatment. Women were concerned that with eHealth as stand-alone therapy, the two following problems could occur: pelvic floor muscle exercises might be performed wrongly if they received no personal feedback; they might lose their motivation for the training program if there was no one to motivate them personally. Several women encountered these problems in regular PFMT, either finding the exercises too difficult or hard to integrate them into their daily lives.

“Pelvic floor muscle exercises are pretty tough. [...] It’s easy to pick the wrong muscles although you might be thinking you’re doing well. It would be nice to have an expert to check it; the computer cannot do that.” (ID 5, 52 years, moderate)

“She [GP] called me after she’d given me the exercises; she encouraged me to do the exercises every day or the muscles would weaken. I have to admit that her message stayed with me.” (ID3, 53 years, moderate)

Next to the need for personal support in eHealth, several women came up with other suggestions to overcome the problems they expected eHealth to raise. Instruction videos showing how to perform the exercises could be embedded; motivation to improve adherence to the training program could be increased by sending automatic reminders or providing tips on how to integrate exercises into daily life. One woman, however, was concerned that digital reminders would unduly emphasize the existence of her incontinence.

“[When undergoing eHealth], I think that you’d be spending too much time thinking about it and focussing on your complaint. That would be no option for me.” (ID12, 82 years, moderate)

Women who were willing to try eHealth emphasized several advantages of the program. They anticipated that eHealth could overcome several obstacles that restrict women from attending a professional to get treatment for SUI. The shame and stigma attached to UI were named as barriers to attending a GP. A few women related that they felt much more ashamed when they had to attend a male GP or consult their GP a second time for the same problem. The idea that a GP would consider SUI to be a minor issue that did not justify a consultation made women reluctant to visit their GP. Anonymity was considered to be an important advantage of eHealth. In particular, those who felt ashamed about SUI commended eHealth because it allows them to perform their exercises in their own homes, or comfort zone, without a healthcare professional’s interference. One woman said that eHealth would enable her to perform the exercises more freely. A few women did not want to have personal support at all during an eHealth training program.

“Yes, it’s a precarious issue, definitely for women, it’s a taboo subject.” (ID6, 70 years, moderate)

“When my complaints become worse, I won’t go [to the GP] again because I find it embarrassing to face that person again; that would make me choose the Internet – it gives you more privacy.” (ID 5, 52 years, moderate)

“I think the advantage [of eHealth] is that you can do it at home, in your own environment. Whereas at the physiotherapist, it’s quite something to lie down or sit on a table and do exercises while someone holds you and checks whether the exercises are going well.” (ID11, 55 years, moderate)

In addition, several women mentioned that eHealth was a solution for socially determined factors that were obstacles to help seeking. These factors included having transportation limits or time restrictions to attend a healthcare professional because women were caregivers. eHealth gave them the opportunity to perform exercises on their own time and at their own pace. This flexibility was also helpful for several women who experienced time limits during PFMT sessions because using eHealth would enable them to reread information. Most women, therefore—including those who would not use eHealth for themselves, expressed the wish that information be provided in a brief and clear manner, supported by visual material. One woman related that eHealth would give her the opportunity to recall the exercises that she had learnt from her physiotherapist, so she could customize her therapy.

“I think that you would allow yourself more time if you do the training program on the Internet than if you have personal contact, because then, you’re mostly more time bound: quick, hurry up. So I suppose that you would be more relaxed.” (ID4, 48 years, moderate)

Women who said they were used to checking the Internet regularly for information on health problems appreciated eHealth for SUI as a source of information. For them, eHealth was a logical step in this digitalized era. Women mentioned the direct access to information about incontinence as an advantage of eHealth for SUI, as it explains that SUI is very common, thus normalizing the problem. A few women suggested that this topic could be addressed in eHealth by videos of other women’s experiences with incontinence or by embedding the possibility for peer support. Making SUI a common problem could also take away women’s concerns about underlying conditions relating to their incontinence, such as prolapse or gynecological cancer. These concerns made a few women reluctant to seek help. A few women mentioned that a physical examination by a GP was needed prior to starting eHealth to alleviate these concerns.

“Everyone is on the Internet, so this [eHealth] fits into these digital times.” (ID12, 82 years, moderate)

“I think I repressed my worries for a very long time. My anxiety was there wouldn’t be anything serious, would there? Maybe cancer or a disease like that [...] This made me postpone seeking help.” (ID11, 55 years, moderate)

Some ideas about treatment options for SUI prevented women from seeking help, and eHealth could provide them with information about therapeutic possibilities. Several women with comorbidity said that their age and condition made them think twice before they sought help because they were resisting interventions, and some of them, therefore, accepted their incontinence. Surgery for SUI was not a treatment option for several women because they had heard about bad experiences from relatives. A few women appreciated that, with eHealth, you have direct access to information about therapy when you forget to ask your GP, for example. Another woman who would not use eHealth herself emphasized its importance for others because if women learned more about incontinence, they would be more likely to be encouraged to seek help.

“Maybe eHealth could provide information about more [treatment] options or possibilities, those things you forget to ask [your GP].” (ID4, 48 years, moderate)

“Women should be informed that if they have problems after delivery, or if they have a prolapse, before it gets worse […] Go to your doctor! Talk about it.”(ID9, 84 years, severe)