Information needs of patients undergoing bariatric surgery in Germany: a qualitative study

We previously published a study from the overall project "Information needs of patients undergoing bariatric surgery" [12]. In a previously published study, interviews were conducted with bariatric surgeons. The introduction of the present paper is based on the introduction of the previously published study. Because of the overlap of methods used (except e.g., recruitment), we adopted the methods used in the previously published study. We followed the guidance provided by the Text Recycling Research Project [13].

The study was approved by the Witten/Herdecke University Ethical Committee (224/2017). All methods were performed in accordance with the Declaration of Helsinki. Written informed consent was obtained from all participants.

This qualitative interview study is part of a larger research project to identify the information needs of patients undergoing BS. We designed a project with three qualitative interview studies (with patients, bariatric surgeons [12] and nutritionists) to identify the information needs of patients undergoing BS and map the information provision within the pre- and postoperative hospital process. The present study targets patients’ views on information needs and healthcare delivery in BS. Therefore, we used the same methods and description of our proceedings, so there may be various methodological overlaps between the papers. We defined information provision as “all processes involved in providing healthcare information to patients”. This includes the form of information (personal, e.g., in one-on-one appointments or in groups or written, e.g., as a flyer or webpage), timing of the information provision (pre/postoperative), and the information provided. Within the other interview study, we concentrated on bariatric surgeons and on information provision, healthcare delivery and information needs.

Choosing a qualitative approach was necessary because we assume that there is no standard in Germany regarding initiating the preoperative (information) process for patients. Therefore, preoperative healthcare provision, including information provision, had to be collected individually through qualitative interviews. One interviewer (JB), who is a nutritionist and doctoral candidate with a focus on BS and an experienced qualitative researcher, conducted the audio-recorded telephone interviews. There was no relationship between the interviewer (JB) and the participants. Participants did not know the interviewer; they only knew she was a researcher at Witten/Herdecke University.

We used the Consolidated criteria for reporting qualitative research (COREQ) checklist [14] to report our results (see Supplement 3).

Eligible patients had to be 18 years or older and had to have had their first irreversible BS (sleeve gastrectomy or gastric bypasses) within the last 24 months in Germany. We chose a 24-month timeframe to decrease recall bias, except for the piloting. We included only irreversible BS patients because the consequences, especially weight loss, are more severe and the changes in body and lifestyle are permanent. For example, Roux-en-Y gastric bypass achieves significantly greater weight loss than laparoscopic adjustable gastric banding [15]. Patients were contacted with several approaches. We contacted all certified competence and reference centers for BS using a list of all certified centers. This list was prepared by the German Society for General and Visceral Surgery, which certifies these centers [16]. We contacted the centers by e-mail and asked them to hand out our patient recruitment flyer to eligible patients. Furthermore, we contacted several obesity and/or BS (patient organized) support groups and asked them to either hand out the patient recruitment flyer or post it on social media (e.g., Facebook). Additionally, we used the snowball sampling technique to ask participants after each interview if they had had any contact with any other eligible patients and, if so, we asked them if they could transfer our patient information flyer. There was no incentive for participation. The recruitment period started in April 2018 and ended in May 2019. Recruitment ended when saturation [17] was reached, which indicated that no new analytical theme emerged..

Data were collected from April 2018 to April 2019. The interview guide (Supplement 1: interview guide) was designed prior to the interviews and consists of four main sections (demographic information, preoperative healthcare provision, postoperative healthcare provision, and information needs) with predominantly open-end questions. It was reviewed and modified by an experienced nutritionist who worked in a clinic for BS in a university hospital for many years and was the head of their nutrition team. The first interview was used as a pretest, but it resulted in no modifications of the interview guide.

The interviews started with questions about the participant’s demographic information (sex, age, education, insurance status (statutory/private), type of surgical procedure, clinic where the operation was performed, duration since the operation, preoperative weight, current weight, and drug and nutritional supplement use). We categorized education into low (ISCED < 3), middle (ISCED 3/4) and high (ISCED > 5) based on the ISCED­2011­Level [18, 19]. Subsequently, the preoperative section dealt with questions about the decision-making process and healthcare processes (appointments with surgeons/nutritionists, support group meetings, and preoperative information provision). Then, the postoperative section continued with questions about healthcare processes (appointments with surgeons/nutritionists, support group meetings, and postoperative information provision), weight loss progress, dietary adaptions and changes in everyday life. The last section focused on information needs and future approaches for information provision.

The audio files of the semi-structured telephone interviews were transcribed verbatim by an external agency. Afterwards the transcripts were checked by the researcher. Participants were not involved in data processing nor analysis.

Based on the interview guideline, data codes were developed prior to the interview analysis by one researcher (JB) and checked by another (NK). The data codes were divided into nine groups:

Furthermore, rules of coding (e.g., just one word or context) and code specifications were defined for each code and subcode (Supplement 2: data coding system).

The transcribed interviews (including the pretest interview) were analyzed using qualitative content analysis [20] supported by MAXQDA software in order to structure the collected data into codes (categories) and subcodes (subcategories). The approach for developing codes was both deductive (the predetermined data codes, derivate by the interview guide) and inductive (elaboration of additional themes in the material as well as compile subcodes to the predetermined data codes). The deductive approach was used on document (whole transcript) level, while the inductive approach was used on code level to create subcodes. Two researchers (JB and NK) independently analyzed one-third of the interviews with the predetermined data codes. After discussion and consensus, the data codes were modified, and the given codes were adjusted. After achieving reasonable interrater reliability, further analysis of the remaining interviews was conducted by one researcher (JB).

All patients had to see a surgeon and a nutritionist prior to surgery. During the individual appointments with the surgeon/nutritionist, most patients received information regarding different surgical procedures and their risks and cost reimbursement by HIFs. Most patients received information about postoperative diet and everyday life. Participant P01 stated that she refused to believe or tried to oppose the thought of the small size of the meals after the surgery and described herself as stubborn regarding preoperative information provision. P09 described a need for additional preoperative information regarding postoperative diet. Information regarding postoperative diet and everyday life was mainly provided by the nutritionist and rarely by the surgeon, and sometimes (additional) information was provided by the support groups.

There were different information provision approaches. Healthcare professionals and support groups were the main sources of information. Additional sources of information included books and the internet. The internet was used to gain general information, such as information about different surgical procedures, as well as specific information through other patients’ experiences via social media, such as Facebook, blogs or a forum.

There were unmet information needs with two factors to be considered. First, there are specific times when information needs could arise (pre/postoperative). Second, due to patients’ descriptions of information, we categorized information into general and specific information.

The person delivering the health-related information on BS is an important factor. Healthcare professionals seem to be the primary source of trustworthy health information for patients [21], which supports patients’ understanding of their diagnosis, treatment decisions and possible prognosis [22]. Healthcare professionals, such as the bariatric surgeon or the nutritionist, were mentioned as a valid source of information by the interviewees, and they were able to take away patients´ fears. Talking to the doctor seems to involve a stronger barrier because the patients do not want to “bother” the doctor. Overall, there seem to be different barriers to the healthcare provided by physicians [23]. Participants described nutritionists as appearing to be closer to the patients and therefore presented themselves as the first professionals to address when information needs emerged. Preoperative NC is mandatory for covering the cost of BS by the statutory HIF but is itself either proportionally or not at all covered by the statutory HIFs. Postoperative NC is not covered by statutory HIF in most cases. Since postoperative NC is stated as essential in information provision, especially regarding specific information, reimbursement of postoperative NC may decrease information needs postoperatively.

While many patients felt fully informed, there were some patients with unsettled information needs. Some patients said one could never be fully informed. Information provision regarding BS seems to depend on individual factors such as postoperative complications/problems. Information could be divided into general and specific information. There is general information that should be provided to every patient (such as different surgical procedures and their risks, and general nutritional information). Additionally, there is information that patients only seek or need if they have a specific, sometimes even rare, problem. Providing this special information to all patients could raise the issue of potential information overload that some patients already mentioned. Therefore, support groups seem to be a valid and important source of this specific information. A sponsorship (patient to patient) within the support group would provide closer contact and could therefore decrease barriers in information seeking.

Information provision, emotional support and experience exchange were mentioned by the interviewees as key elements of support group meetings. Support groups have previously been shown to positively influence weight loss/maintenance through emotional support [24] or to support long-term weight loss more generally [25]. Additionally, either local or online support groups provide low-barrier access to information in comparison to clinical settings. Social media, such as Facebook, were used for online support groups. Facebook support groups seem to provide postoperative social support and are most effective if monitored by bariatric healthcare professionals who ensure the reliability of the information provided and screen for and correct inappropriate posts [26]. However, online support groups on social media could also provide medical or nutritional information without proper scientific citations, which can complicate information seeking for patients undergoing bariatric surgery [27]. Additionally, most bariatric patients integrate web-based information gathered through their own web searches in their decision-making processes [28]. Another possible approach providing specific information could be a digital solution such as an app. Digital solutions, such as online forums, could motivate patients regarding weight loss [29] but need to be supervised by a healthcare professional to avoid misinformation [30]. Likewise, local support groups could benefit from regular visits by a healthcare professional regarding the quality of the information provided. Therefore, web-based and local support groups present a possible communication strategy for providing high-quality health-related information on BS if they are monitored and/or edited by a healthcare professional.