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Department of Pediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, SwedenDepartment of Psychology, Lund University, Lund, Sweden
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, SwedenRegion Västra Götaland, Sahlgrenska University Hospital, Department of Surgery, Gothenburg, Sweden
Patients were interviewed in depth 10 years after undergoing bariatric surgery.
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Participants acknowledged a continued effect on eating and weight regulation.
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Struggles with finding the right support and self-criticism were similar to before.
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Patients must be encouraged to seek additional care when facing problems.
Abstract
Background
Bariatric surgery is a standard treatment for severe obesity, but little is known about patients’ perceptions about the long-term impact of such surgery.
Objective
The aim of this study was to explore patients’ experiences of living with a bariatric procedure for more than a decade.
Setting
University hospital.
Methods
At the 10-year follow-up after undergoing Roux-en-Y gastric bypass (RYGB) or biliopancreatic diversion with duodenal switch (BPD/DS), 18 consecutive patients from a previous randomized controlled trial were assessed with a semi-structured interview. Data were analyzed using thematic analysis.
Results
When asked to reflect broadly on their experiences of living with bariatric surgery for over a decade, the participants rarely mentioned procedure-specific issues and complications. Instead, their accounts revealed 2 broad themes: sustained effects after surgery, incorporating subthemes of better health, brighter futures, and better eating and weight regulation, and continuing struggles, including difficulties with physical activity, finding support, helping their children with overweight, and self-criticism. Many positive changes were sustained, but continuing personal struggles were similar to those presurgery.
Conclusions
Participants expressed overall satisfaction with their bariatric surgery and related outcomes. Most participants acknowledged a continued effect on their appetite, which could be important information for patients who worry about a diminished effect after the first year postsurgery. Participants were prone to self-blame when things did not turn out the way they wanted. Therefore, healthcare providers must build a trustful relationship with their patients, so they will not hesitate to return when they face problems such as weight gain.
Metabolic and bariatric surgery (MBS) is a standard treatment for severe and complex obesity. Data beyond 10 years show that, regardless of procedure, MBS leads to sustained weight loss, which is associated with reductions in co-morbidity and mortality [
]. Outcomes for mental health are more inconclusive; some studies report sustained improvements in mental health (i.e., depression) up to 10 years after MBS [
Follow-up studies usually focus on only 1 or few aspects at a time and mainly report average outcomes. Those studies are fundamental to healthcare providers’ understanding and evaluation of the effects of MBS but might obscure the holistic perspective and the patient’s own perspective. Data collected in qualitative studies can capture these broader views and lead to an in-depth understanding of subjective experiences.
Several qualitative studies conducted during short- or mid-term follow-ups in patients after MBS report rapid changes in everyday life during the first year after MBS including a renegotiation of self-identity [
]. A thematic synthesis of 33 qualitative studies of MBS patients identified 3 global themes: control (primarily control over eating and weight), normality (ability to engage in everyday activities and look more “normal”), and ambivalence (many changes perceived as improvements, but some as new difficulties) [
]. A qualitative synthesis of 20 papers focusing on patients’ experiences with follow-up after MBS concluded that many continue to need support in several domains (medical, nutritional, and psychological) after the first year [
Few long-term studies of MBS report qualitative data on patients’ experiences, but it is important to know how patients understand their overall experience of MBS and whether and how they feel it continues to affect their lives long after the period of rapid transformation. It is also important for healthcare providers to understand how patients perceive the care offered during long-term follow-up, so that care can be optimized and encourage more patients to continue in regular follow-up. One long-term follow-up study on eating 8 to 10 years after MBS found various associations between postsurgery relationships to food and quality of life (QoL). Weight loss was associated with food attitudes, identity, and QoL, with better health reported by participants with sustained weight loss [
The aim of this study was to explore and describe patients’ long-term experiences of living with a bariatric procedure. The study was designed to capture their overall experiences by encouraging participants to talk about the topics they found most relevant about living with MBS for more than a decade.
Methods
Participants
Eighteen patients were recruited from a randomized controlled trial (RCT) comparing the effects of laparoscopic Roux-en-Y gastric bypass (RYGB) and laparoscopic biliopancreatic diversion with duodenal switch (BPD/DS) in patients with a body mass index (BMI) of 50–60 kg/m2. Inclusion criteria in the original RCT have been published in detail elsewhere, but included BMI 50–60 kg/m2, age 20–50 years, and previous nonsurgical weight loss attempts without sustained effect. Exclusion criteria in the RCT included, but were not limited to, previous MBS, severe psychiatric illness, and ongoing drug abuse [
Sixty participants were included in the original RCT, 30 each from 2 surgical centers in (Gothenburg) and (Oslo). Both operating clinics are publicly funded, as are the vast majority of healthcare facilities in both countries. All participants in the present study underwent surgery in 2006 or 2007 at the center in (Gothenburg), took part in the original RCT, and were invited consecutively to participate in an in-depth interview in conjunction with their 10-year follow-up for the original study. The 10-year follow-up in the RCT was somewhat delayed, and the follow-up visits were started in May 2018. When the participants returned to the clinic for their 10-year follow-up in the RCT, they were informed of the aim of the present study and invited to participate. The present interview study had no added exclusion criteria, and all participants in the original RCT included in (Gothenburg) were invited to participate. Fig. 1 illustrates the relationship between the 2 studies.
Fig. 1Flow chart showing recruitment of participants from a randomized controlled trial comparing 2 surgical procedures in patients with a BMI 50–60 kg/m2.
Interviews were carried out until the data were deemed saturated. In qualitative studies, saturation is considered reached when the collected data have both the necessary quantity (sufficient data) and necessary quality (sufficient depth and complexity) to meet the aims of the study and new informants merely confirm the data already collected [
]; however, 2 studies aimed specifically to analyze the saturation point in interview studies suggested that saturation occurs with only 12 interviews [
Participation was voluntary and written informed consent was obtained from all participants included in the study. The study was approved by the regional ethics committee in (Gothenburg) and conducted in accordance with the World Health Organization’s Helsinki Declaration. The study is registered in Clinical Trials (NCT00327912).
Interviews
Semi-structured interviews were used to collect data. A topic guide (Fig. 2) was developed from a previous guide. The previous topic guide was used at baseline and at the 1- and 2-year follow-ups after MBS in a prospective qualitative study with patients from the original RCT comparing RYGBP and BPD/DS [
]. Some topics relevant at long-term follow-up were kept in the guide, but slightly rephrased to be relevant at this time point. As the overarching aim was to enable interviewees to expand on patients personally relevant to them, we retained the broad general questions and used the topic guide as a flexible tool to allow participants to interpret or expand upon the topics as they wished. A topic about the experiences of care was also kept as this was considered of importance to capture.
Fig. 2Topic guide used during the participant interviews.
All interviews were conducted at the clinic by the same researcher (M.E.). As a clinical specialist in surgical nursing, M.E. had been involved in both quantitative and qualitative research at baseline and at the 1-, 2-, and 5-year follow-ups in the RCT. Thus, all interviewees were familiar with M.E., who had followed them for many years. The interviews were held on the same day as the 10-year follow-up for the RCT and recorded using a dictaphone. After the first interviews, M.E. concluded that the topic guide worked as intended, and it was not further altered. To maintain confidentiality, names and other personally identifiable data were not mentioned during the interviews but were replaced with participant codes to retain and protect the participants’ identities. The recorded interviews were transcribed verbatim by an administrative employee at the clinic.
The transcribed data were analyzed using inductive thematic analysis aimed to create a rich thematic description of the content of the entire data set. The thematic analysis was carried out by the first author (K.J.), who had no information about the participants (e.g., demographic characteristics, procedure, or weight outcome) beyond that mentioned in the interviews. As the first author is a clinical psychologist with extensive experience of meeting MBS patients, however, we must acknowledge that the coding and interpretation of data may have been influenced by the researcher’s pre-existing understanding of the subject. Also, the selected approach and its inherent ontological assumptions will influence the kind of results a qualitative study can generate.
In this study, we used an inductive (bottom up) approach to generate data-driven themes reflecting the views of patients as opposed to a deductive (top down) approach driven by the researcher’s theoretical interests, often with a detailed focus on a limited number of aspects [
]. The analysis followed a realist/essentialist paradigm, which assumes a largely unidirectional relationship between language, personal experience, and meaning. In an analysis guided by these assumptions, coding and interpretation stay close to a participant’s statements and assume those statements are valid representations of the participant’s reality [
]. Therefore, the themes in this study were identified at an explicit, rather than latent, level using thematic analysis to summarize and interpret the meanings and implications of participants’ descriptions. The analysis followed the steps suggested by Braun and Clarke [
becoming familiar with the data (reading and rereading the transcribed interviews);
2.
coding the entire data set (systematically identifying and naming interesting features of the data);
3.
searching for themes (analyzing how codes may combine into overarching themes);
4.
reviewing the themes (refining them in relation to the codes and the whole data set); and
5.
defining and naming themes (identifying the essence of each theme and possible subthemes).
The coding in step 2 was done in Microsoft Word, and the data were then exported to Microsoft Excel for steps 3 to 5. During steps 3 to 5, the themes were developed and elaborated in collaboration with the last author (M.E.). Reflexivity, that is, a continuing process in which researchers critically analyze the knowledge they produce in light of their pre-existing understandings and make themselves visible as a part of the research process [
], was maintained by continuing discussions on how our previous knowledge and experiences may have influenced the interviews and our understanding and interpretation of the data. Suggested themes were checked against the transcripts. Any disagreements in classification or interpretation were discussed until consensus was reached. The second author (T.O.), a bariatric surgeon, then reviewed the themes, subthemes, and the illustrative excerpts to confirm the match between data and the analytic claims.
Results
All patients approached agreed to participate. After 12 interviews, little new information emerged, and the interviewer (M.E.) judged the collected information rich enough to meet the aim of the study and conducted 6 further interviews to confirm saturation. Data from all 18 participants were analyzed in this study, and Table 1 shows demographic characteristics of the participants. The mean age of the participants (61% women) was 48 ± 6 years. Ten of the participants had undergone RYGB, and 8 BPD/DS. Preoperative mean BMI was 55.5 ± 3.7 kg/m2, and current mean BMI was 40.2 ± 7.4 kg/m2, with a mean excess BMI loss of 50.1 ± 22.2% for the total sample. Median total weight loss was 32.4% (range, 4.8%–47.0%).
Table 1Sample characteristics
ID
Sex
Age at interview
Type of surgery
Preoperative BMI
Current BMI
Change in BM
Total weight loss, %
Excess BMI loss, %
Interview time, min
A
F
38
RYGB
60.9
57.7
3.2
6.3
8.9
44
B
M
57
BPD/DS
54.3
33.6
20.7
40.9
70.6
61
C
M
53
BPD/DS
56.8
30.8
26.0
47.0
81.8
33
D
F
53
RYGB
56.2
48.4
7.8
15.0
25.0
48
E
M
46
RYGB
58.2
55.4
2.8
4.8
8.4
7
F
F
49
BPD/DS
54.0
43.1
10.9
19.1
37.6
38
G
F
53
RYGB
57.0
40.2
16.8
31.9
52.5
38
H
F
43
BPD/DS
51.0
38.4
12.6
23.0
48.5
52
I
F
48
BPD/DS
49.0
31.4
17.6
35.6
73.3
62
J
M
58
BPD/DS
56.3
37.8
18.5
32.8
59.1
55
K
F
44
RYGB
49.0
42.1
6.9
11.7
28.8
51
L
F
42
RYGB
51.6
38.6
13.0
25.2
48.9
43
M
F
56
RYGB
59.0
38.5
20.5
35.3
60.3
30
N
M
51
BPD/DS
59.9
37.5
22.4
37.7
64.2
64
O
M
48
RYGB
53.5
35.4
18.1
34.0
63.5
25
P
F
44
BPD/DS
60.0
34.8
25.2
44.3
72.0
64
Q
F
34
RYGB
58.2
35.6
22.6
35.4
68.1
55
R
M
50
RYGB
53.8
44.9
8.9
21.2
30.9
24
ID = identification; BMI = body mass index; F = female; RYGB = Roux-en-Y gastric bypass; M = male; BPD/DS = biliopancreatic diversion with duodenal switch.
Despite participating in an RCT comparing 2 different procedures, few patients mentioned the specific procedure they had undergone. None expressed any regret about participating in the RCT or wished to have had the other procedure. Two participants (1 GBP and 1 BPD/DS) talked extensively about complications. Twelve (6 GBP and 6 BPD/DS) talked about gastrointestinal side effects, ranging from mild problems (e.g., temporary constipation) to more disabling conditions (e.g., often needing a bathroom in close proximity). One participant admitted that he was not sure what procedure he had:
J:
Yeah, OK, I gotta admit it, I've always said I did a gastric bypass, but I guess I have to take that back now.
Two broad themes, sustained effects and continued struggles, were found in participants’ narratives about living with obesity surgery for over a decade, along with aligned subthemes. Fig. 3 gives a visual summary of the themes and subthemes. The surgery had an immense impact on everyday life in some areas, while many daily issues were unchanged after surgery.
Fig. 3Themes and subthemes identified in in-depth interviews with 18 patients ≥10 years after metabolic and bariatric surgery.
Participants talked about several aspects of their lives in terms of before and after, and they attributed effects in their daily lives sustained over 10 years to the bariatric surgery.
A brighter future
Many experienced their time before surgery as so restricted by obesity that they were not able “to live a full and functional life.” In retrospect, several participants described how they had been unable to see any future for themselves before their surgery. They imagined that had they not had the surgery, they would now be dead or severely ill (n = 10). Undergoing MBS was described as a turning point, and many perceived it as a last resort.
B:
I’m sure I’d have eaten myself to death or had diabetes or all kinds of diseases if I had even been alive at fifty-five… years of age.
Before the surgery, patients described their obesity as an obstacle to achieving or sustaining important life goals such as being able to work, finding satisfying employment, or having children (n = 6).
B:
And life was tough, and my job was getting tougher, and my job is very important to me. So that’s also a big part of why I had the surgery.
However, not all participants described their lives and prospects before surgery in negative terms. Some described themselves as not having been completely affected by their obesity and having been able to cope with the situation (n = 4).
I:
I’ve always been happy, always, sort of… Oh, you see, it’s not much fun, there’s lots of sadness in weighing a hundred and fifty kilos, there really is, but still [I] managed very well somehow and not like, you know. Overcompensated somehow… I’m socially competent, and it’s never been a problem, you see?
All participants described having undergone MBS as partly or completely positive (n = 18). Many of the positive statements described a holistic sense of undergoing surgery as something good (n = 12). Several participants expressed their gratitude for having had the operation.
J:
Yes, of course, it’s only been positive. That’s just how it is. There’s no negative, I can tell you that.
C:
But then, when you helped me with this, it’s been, you know, it’s really fantastic.
Beyond the generally positive statements, some specific positive results were also mentioned by several participants, such as becoming a parent after surgery, having more energy, and being able to buy clothes in mainstream stores (n = 8).
H:
I can buy clothes in normal clothing stores. Yes, really. Before I couldn’t do that, so it’s like… So, I’m really happy about that.
A more regulated way of eating
Eating behavior, especially control over eating, was particularly singled out as changed for the better. Eating before surgery was described as dysregulated and difficult to control (n = 12). Participants talked about their pre-operation inability to feel full, which led them to eat excessive amounts of food.
A:
Because before … I couldn’t stop myself, I mean, there was no end to my appetite.
Some participants (n = 3) also described having used eating to cope with emotions and stress, resulting in short-term relief, but doing more harm than good in the longer perspective.
R:
Yeah, you see, there was so much frustration and then, as I said before, I get home late, I’m hungry and then I just get something fast. So it becomes kind of like a bad spiral, really.
Eating patterns after surgery differed in several ways from before for all participants (n = 18): they described now taking smaller portions of food, making healthier food choices, allowing more time for eating, or developing new taste preferences. Most participants reported that their eating, even a decade after surgery, was still physically regulated. Although some participants acknowledged a stronger physical response right after surgery, many described a substantial continued effect. This physical restriction made them feel full quickly and prevented their intake of large portions despite any strong desire. Beyond the feeling of fullness, the participants also described increased satisfaction from eating, allowing them to feel sated after smaller portions and preventing their overconsumption of unhealthy food and snacks.
P:
But now I’m like this, I still like chips, but now it’s enough with a handful.
Dumping was still recurring for many participants, especially when they ate too fast or foods too high in sugar or fat (n = 9). This, however, was perceived as a signal regulating eating, unpleasant, but still helpful.
O:
“… now you did something stupid again. Get a hold of yourself.” Then you know, this is something you can never ever do again.
More than half (n = 10) talked about still noticing an increased sensitivity to alcohol. They described drinking less than before surgery and less than their nonoperated partners and friends. They also found socializing around alcohol to be difficult.
K:
… you still have to think about it, when taking one or 2 glasses too many, you get all giggly and chatty, even more than usual, oh, I feel sorry for my partner.
N:
Yep, that’s how it is [laughing], party’s over. Sure, it happens, like at midsummer, you know, we had schnaps with the pickled herring, and then, I’m like, I go to sleep for 2 hours and come back later …
Over time, the participants had developed strategies to handle their physical responses to eating and to drinking alcohol (n = 16). They described these physical signals as tools they had learned to use or cope with over time. They developed strategies, such as planning ahead, choosing appropriate foods and drinks, and timing their eating, to incorporate these responses and use them supportively in their lives. Participants also coped with their circumstances by devaluing things that they could not fully take part in anymore due to the surgery.
M:
But I’ve actually never, since I’m like this, and I’m really too old now, can’t have a hangover day, but no, it’s really like that, it’s really tough, so I choose not to drink, and I don’t really need it. I get cocky anyway [laughing].
Better weight regulation
Weight control and dieting before surgery were described as an endless struggle. A common experience was having tried every available diet, which for many resulted in yo-yo dieting (n = 8). Their repeated dieting before surgery was perceived by many as having done more harm than good.
M:
Oh my god, I’ve done everything. So, there’s Weight Watchers, diets, tried this, tried that, losing ten kilos, putting on twenty kilos … I have dieted myself fat to put it bluntly.
Participants’ weights also continued to fluctuate over time, but many described having a new lower weight “set-point” (n = 9). Their weight fluctuations, attributed to internal and external factors, never exceeded a certain range. Some participants reflected upon finding their personal “best weight,” acknowledging that they were far from normal weight according to a BMI definition, but still able to live a functional and satisfying life at their current weight.
P:
From how I see it, I don’t think there’ll be any drastic stuff going on with my body right now, I think I’m quite stable it’s like I always say, I feel like, well, my body wants to stay like this [laughing], it doesn’t want either to put on much or lose much.
A new normality
Many and substantial changes were described; however, life after surgery was mainly referred to as the new normality. Coping with the continued effects of surgery was perceived as the new everyday life (n = 9). Some patients described having envisioned more complications and adverse effects from the surgery. The lack of expected complications was seen as helpful in their adaptations to their new lives after surgery (n = 6).
D:
I’ve felt always fine, you know, so life kind of moves on as usual.
Continued struggles
Although MBS was described as a positive life change in many respects, participants also continued to struggle in their new lives.
Struggling with weight
In contrast to participants who described a new more or less self-regulating set-point, others talked about struggling with weight regulation (n = 5). For these participants, any weight gain was intimately associated with fear.
O:
Oh, it’s when I weighed around, got down to about a hundred and twenty something and then I realize I’m putting on weight again, and then it was, you know, I’m panicking. Then you feel like, no, I never want to weigh that much again.
Some participants had started dieting or talked about how to find the right diet to maintain a satisfactory weight (n = 5). Some made small changes in their everyday lives, while others followed programs such as Weight Watchers or used low-calorie meal replacements.
H:
… I’ve tried different diets, sort of. And LCHF maybe isn’t so good for this surgery, really, but I’ve done it my way, so I don’t have to eat so much fat, you know. And I lost weight anyways, thanks to that.
Struggling with physical activity
Surgery led to fundamental changes in eating habits and approaches to food. However, the same changes were not described in relation to physical activity, and many participants described struggling to become and stay active. Those participants were well aware that they should exercise regularly, and for many their lack of physical activity was a constant guilty conscience (n = 7).
G:
No, I have to, that’s what I think, I have to, really, and I feel bad and I get stressed not doing it.
Participants identified practical, physical, and mental barriers to physical activity (n = 11). Practical barriers, such as a hectic family life or a sedentary work, were perceived by participants as beyond their personal control, and physical barriers, especially pain, were obstacles to even gentle physical activities such as walking.
F:
… then, my knees weren’t as bad as they are now. Then I was walking nice and easily and …
D:
And also, I’m sitting much more still at work than I used to, I mean, I’m much more tied to my computer.
Several mental barriers to physical activity were discussed, including not identifying as someone who can or is even allowed to be physically active.
P:
…you know, I’m pretty happy with myself and pretty happy with life, but when it comes to these kinds of exercise situations and stuff, then you’re still, mentally I’m still a hundred kilos, I’m still like a hundred and forty kilos all over again …if your only memories since you started remembering again is that it’s boring and exhausting and you always get picked last, and not getting over, you just feel like you’re about to die when you’re forced to run some damn track in some stadium, and stuff.
Some participants, however, did describe a satisfying level of physical activity having found “their thing,” whether it was exercise in the gym, recreational exercise, or something else (n = 6). The participants who had found a working routine for physical activity talked about it with pride and satisfaction.
O:
Lately I’ve been walking a lot on the treadmill. Actually, I’ve started running on the treadmill, too, and I’m so very proud to be able to do that.
Struggling to find the right support
Many patients expressed satisfaction with their care from the hospital and the surgical clinic, and they acknowledged that being part of a study had given them access to continued follow-up beyond standard care (n = 12). Some patients, however, expressed a need for more psychosocial follow-up (n = 5) or more dietetic advice (n = 3) from the hospital.
H:
It should, it’s supposed to help you catch up, so you catch up with the change, ‘cause it’s kind of like the brain still thinks you are huge, even though the body changes, and you can’t see the change itself, you really can’t.
Most participants described their yearly follow-up in primary healthcare as nonexistent or suboptimal, which they attributed both to themselves and to primary care.
Individual explanations included carelessness (n = 3) or feeling so healthy (n = 4) that follow-up seemed unnecessary.
A:
But, I mean, I’m fine. I don’t need to [laughing], I actually don’t need to have anything to do with them.
A common explanation for missing yearly check-ups was the lack of an appointment letter from primary care (n = 7). The patients were expected to remember when it is time for an appointment and to contact their healthcare center to arrange for a visit.
L:
Yeah, so I actively got in touch with the primary healthcare center after getting back after the surgery and I told them I’d like them to book appointments for me, but it hasn’t really worked, so, you know, I need to keep pushing if I want to meet them for follow-up and so. That’s how it’s been. So after some years it died out and I’ve simply not been there. I was probably more ambitious in the beginning afterwards [laughing].
Participants often experienced a lack of knowledge about bariatric surgery in primary healthcare centers (n = 9), which undermined their confidence in this care. Several had had to tell the primary care what kind of follow-up they needed, and many felt the advice from the primary care doctors contradicted the information they’d had from the surgical clinic.
M:
Oh that, no, I don’t think it was good. They are not well informed at all… They didn’t know what tests to take. I had to call [Gothenburg], and I had to send papers, and so I actually think that needs to improve.
B:
So, suddenly one day I was told to stop taking B twelve. It was not necessary. That’s all.
A few participants received good quality care from their primary care centers, and they expressed satisfaction. A common factor in these experiences was that they had found a specific doctor who was both proficient and committed (n = 3).
K:
He kept track of me, I always got to come and take new tests, he kind of kept an eye on me and so I understood he was a very appreciated doctor.
Person-dependent patient satisfaction with care, however, was commonly interrupted when the specific doctor left the healthcare center.
K:
… and after that, after he moved… I’ve not had any good doctors, unfortunately.
Aside from efforts from healthcare professionals, many participants talked about getting vital support from their partners and families. When the support worked well it was described as a resource or a necessity for coping with surgery.
P:
And I was lucky also because my sis had a surgery, too, not the same surgery but still an overweight surgery, one year before, so we talked about it a lot and searched for information together…
When support was lacking or suboptimal, or when their partner needed all the support, it could lead to martial problems or even break-ups (n = 4).
L:
And, about that, my husband hasn’t really kept up, you know. With my own process in this, and I guess that was part of the reason for the crisis we had, that he kind of took it for granted that I was the same person as when we first met 25 years ago.
Struggling to be the right support for yourself and others
Many participants recognized that the key to success was their own motivation. Support from the healthcare system or their family could help, but only if they truly wanted to make the changes enough themselves. Inner drive was seen as a prerequisite to action and change, and personal responsibility was emphasized by many (n = 8).
R:
No matter how much you all want me to, if I am not there, listening, it doesn’t really matter what you are saying.
Several participants had children before the surgery or became parents during follow-up (n = 11). A recurring theme was how to adequately support their children who had a tendency for overweight or obesity (n = 5). Many participants found it painful to see their children struggle the way they themselves had and not be able to help them sufficiently. Although the participants had struggled with their weight for most of their lives, they still felt uncertain about how to help their own children.
N:
It’s very hard. Since a part of me says sure, have the surgery, then so you don’t get a choice anymore, but I’m trying to teach her, you know, spread out your meals throughout the day, rather than just eating a big breakfast and then again when you get home, but rather eat a normal breakfast, bring something to work, some veggies or fruit or something. And sure, she’s trying, but she’s probably having the same problems as I did back then.
A:
I don’t know how much a 2-year-old is supposed to eat. At daycare, they tell me she’s eaten really well, but if really well means 2 grown-up plates or if it’s 2 egg cups, I have no idea, I don’t know. And I think it’s, it’s really hard.
Struggling with self-blame
As mentioned in 3.1.1, many participants expressed their gratitude for having had the opportunity to undergo MBS. Some participants paired this with self-blame, however, for not making the most out of this opportunity (n = 7). Their line of reasoning was that society had made a great investment in them and the surgical team had tried their best to help them, but that they had not managed this investment well enough.
Q:
… and now society has been so kind and given this surgery to me, and then I go and buy a Marabou [a chocolate bar] when I have my period and have a craving for chocolate. Goddamn it, I’m such a horrible person.
This attitude was also related to complications and adverse effects. Participants said they worried about harming the statistics if they had any complications, and one participant admitted not mentioning any problems at follow-ups out of gratitude for the surgery.
I:
So I’ve chosen not to see it as a problem since I think it helped me so much.
Discussion
The participants in the present study were drawn from an RCT study comparing RYGB and BPD/DS for the treatment of very severe obesity (BMI 50–60 kg/m2). However, when interviewed about their experiences, without any procedure-related questions, more than 10 years after the procedure, they focused on how their lives had changed and how they had coped (and were coping) with the changes with little reference to whether they had had RYGB or BPD/DS. They also mentioned some struggles that remained the same. Findings from other long-term qualitative studies have also been summarized as “totally changed, yet still the same” [
], and in the present study many participants indicated that the phase of identity transformation, as described in several short-term qualitative studies, was over now and they referred instead to a new normality.
Sustained effects after surgery
When describing their decision to undergo MBS, many participants emphasized being motivated by broad physical changes such as staying alive or avoiding severe illness or becoming disabled, which is in line with findings from other qualitative studies [
]. Our study results also match 2 of 3 subthemes for such motivations (co-morbidity and medication resolution and mobility) reported in a recent study in patients considering MBS, but not the third (physical appearance/self-image) [
], while improvements in self-image seem to be less sustainable; this might explain why many respondents do not emphasize this motive in retrospect.
Some participants reported satisfactory or even good QoL before surgery. It is beyond the scope of this paper to compare these participants with those who experienced substantial problems before surgery. Still, it would be valuable to learn how differences in physical burden contributed to differences in QoL. Some individuals might have managed to develop coping strategies to make life with severe obesity more functional, and such knowledge could be used to guide people with severe obesity to live their lives as functionally as possible. It is also important to reject the stigmatizing position that all people with severe obesity experience low QoL.
The findings in the present study expand our understanding of patients’ long-term perception of their appetite after MBS. Other qualitative studies have found that patients perceive their eating as physically controlled during the first year, but that this “stomach control” wears of and needs to be replaced with “head control” [
]. The transfer of perceived control from the stomach to the head is often associated with the worry that the surgery’s effect will vanish. In the present study, many participants still experienced more regulated eating over 10 years after the surgery. This patient-reported long-term effect could be an important message to the many patients in the second year after MBS who fear losing control over their eating again [
Over the years the participants had learned how to adapt their eating to their new gastrointestinal signals. They had also developed different strategies to manage their continued higher sensitivity to alcohol [
]; therefore, it is important to inform candidates for MBS that their ability to drink alcohol socially will be permanently altered. In a qualitative study of MBS patients treated for substance abuse after surgery, a majority (70 %) reported that they wished they had been better informed about the risks of post-MBS substance use [
Different stories were told about weight regulation after surgery. Some participants described how regulating their weight was much easier after MBS, while others continued to struggle with difficulty and associated this struggle with fear and feelings of failure. This is in line with findings in previous qualitative studies that patient narratives frequently contain control-related themes and that patients tend to blame themselves and talk of weight gain in terms of shame and failure [
]. However, the broad range of long-term weight loss after MBS is not fully understood; most studies suggest individual physiologic responses as the main determinant of this difference, rather than behaviors or compliance [
]. Such information may alleviate self-blame in patients following a weight regain.
Continued struggles
Both patients and healthcare providers might expect that many problems considered associated with obesity, such as lack of physical activity and inability to support their children’s efforts to control their own weight, will resolve automatically with postsurgical weight loss. Objective assessment, however, shows that while physical activity increases during the first year after surgery, only a limited increase is maintained over 3 years. Despite the overall increase, the actual level of physical activity continues to fall short of recommendations [
]. Unrealistic expectations from both patients and healthcare providers might be fueled by the oversimplified representations of MBS and obesity in society, which overlook the multifactorial causes including an obesogenic society [
The notion that weight loss per se should lead to increased physical activity is strong. Patients seeking MBS identify weight loss as the primary facilitator of physical activity even when several reported barriers are not obesity related [
]. The reports from the patients in the present and other studies indicate that interventions to increase physical activity need to target complex problems and behaviors [
]. Some patients might need individualized support from a physical therapist to become and stay active while experiencing pain or excess skin. Others might benefit from interventions to overcome self-identification as a non–physically active person and increase their activity.
Some participants in the present study expressed feeling helpless to deal with their children’s obesity. Some might have hoped that their MBS would also benefit their children by making the whole family’s diet healthier, but previous research has shown that family eating patterns continue relatively unchanged in parallel to the eating habits of the parent who has undergone MBS [
]. Therefore, family-based interventions might be necessary to reach the children of MBS patients. To prevent self-blame and foster realistic expectations, parents might benefit from being informed about the risk of their children sharing their parents’ genetic risk for obesity [
], the participants talked about how undergoing MBS tested the quality and sustainability of their interpersonal relationships. In another qualitative study using focus groups with patients after MBS, 2 of 3 main themes (change in perception by others and change in relationships) were related to interpersonal changes [
]. MBS is often perceived as a life-changing journey, not just an effective treatment for a chronic disease, and people’s identities might need to be renegotiated with weight loss [
]. The rapid change in many aspects of everyday life after MBS have a profound impact, not only on the operated individual, but likely also on the dynamics of their relationships, which could bring out or exacerbate marital conflicts. Not all separations are unwelcome, however, and 1 participant talked about MBS giving her the strength to end a destructive relationship. Thus, our findings support previous studies indicating that it would be helpful to inform and prepare patients for possible interpersonal effects [
The participants in the present study were followed by the operating clinic for the first 2 years after surgery and then referred to yearly follow-ups in primary care. They returned to the operating clinic after years 2 and 5 only for study visits according to the RCT protocol; responsibility for clinical follow-up generally remained with primary care. The surgical clinics, however, continue to be responsible for registering outcomes in the national register (Scandinavian Obesity Surgery Registry).
Adherence to follow-up is associated with improved weight loss [
], but the participants in the present study acknowledged discontinuing their follow-up in primary care for several reasons. This is not unique to this study; in Sweden, only 46% of MBS patients have a registered 5-year follow-up [
Scandinavian Obesity Surgery Registry. Annual report SOReg 2018, part 2. Uppföljning, viktförändringar, förändring av samsjuklighet, långsiktiga komplikationer och kvalitetsindikatorer på kliniknivå [Follow-up, weight changes, changes in comorbidity, long-term complications and quality indicators at clinic level; monograph on the Internet]. 2019 [cited 2021 Jan 25]. Available from: https://www.ucr.uu.se/soreg/component/edocman/arsrapport-soreg-2018-del-2.
]. In a study from the UK, patients’ experiences of follow-up after MBS were characterized by feelings of abandonment and isolation, attributed to patients’ lack of clarity about where to get support, receiving support only immediately after MBS, and the need to initiate contact themselves [
]. Participants in the present study also acknowledged the need to initiate contact as a barrier to regular follow-up. The lack of primary care initiatives such as sending appointments might be perceived not only as a practical obstacle, but also as a signal of care providers’ lack of interest in MBS patients’ health and well-being. This possible perception is supported by the contrasting satisfaction described by those who described having a dedicated and caring primary care physician.
A qualitative synthesis of studies on follow-up after MBS identified self-efficacy and having knowledgeable healthcare professionals as facilitating attendance at follow-up care [
]. This is in line with the findings in the present study, and it is important to develop evidence-based guidelines for the entire care chain, including better cooperation and information transfer between operating clinics and primary healthcare. However, some participants also reported that feeling well left them less motivated to attend follow-up appointments; providing digital solutions might reduce the inconvenience of in-person appointments and increase these patients’ motivation to continue with follow-up.
Participants repeatedly expressed their gratitude for having had the opportunity to undergo MBS, which is likely a sign of general patient satisfaction. In line with other qualitative studies on patients’ overall experience with MBS, these patients saw their surgery as a good decision, despite accompanying challenges [
]. However, this gratitude may make patients reluctant to complain. Therefore, care providers need to listen attentively to patients, probe beyond their general satisfaction, and encourage them to talk about problems they associate with their treatment. When problems arose, the participants were likely to blame themselves for not taking full advantage of the opportunity they had been given. This might be partly explained by internalized weight bias, in which people integrate the stigmatizing attitudes they have been exposed to as parts of their self-concepts. Many people with obesity hold the same negative attitudes against themselves as those expressed by society in general [
], including perceptions about people with obesity being lazy and lacking will power. Those negative self-attitudes will not automatically disappear with MBS and weight loss, and can remain as negative self-schemas that are easily activated.
Self-blame and feelings of failure also tap into the societal narratives of MBS as a fairy-tale solution and suboptimal outcomes as the fault of “nonideal” patients [
]. Therefore, MBS teams must build trustful relationships with their patients, so they do not hesitate to return when they face problems such as weight gain or other complications. Previous findings from MBS patients show that they consider a nonjudgmental attitude just as important as a high level of knowledge in healthcare professionals [
Many patients in the present study referred to the low number of complications as a reason for them doing well, finding a new normality, and living a functional life after MBS. This is a particularly interesting finding given that complications were quite common in the present sample: at least 1 adverse event was reported in 68% operated with RYGB and 79% operated with BPD/DS [
Five-year outcomes after laparoscopic gastric bypass and laparoscopic duodenal switch in patients with body mass index of 50 to 60: a randomized clinical trial.
]. In an in-depth exploration of patients after MBS, a majority of the patients were classified as “risk accepters” as they reported a high preparedness to adapt to and accept challenges and changes after MBS [
]. Such a mindset might have helped some participants to manage and overcome adverse events so well that they hardly recognized them more than a decade after their MBS. This highlights the importance of recognizing that patients’ perceptions and evaluations of MBS might deviate considerably from those of healthcare professionals using the normal primary endpoints to assess the efficacy and safety of the treatment. Thus, it seems important to use both biomedical variables as well as patients’ own perspectives when evaluating and understanding the effects of a treatment.
Limitations of the present study include both methodologic strains and participant selection. Although we used thematic analysis with an inductive approach, data can never be coded completely independent of the preconceptions of the researcher, and there is a risk that we read things into the data that were not there. All 3 authors work in clinical settings with MBS patients and our pre-existing understandings could have affected all parts of the process from interviewing to coding and thematization. Two of the authors (T.O. and M.E.) were also researchers in the original RCT from which the participants were drawn, and as clinicians were familiar with the participants. Therefore, only 1 author, (K.J.), who had no previous acquaintance with the participants, conducted the primary coding. It is possible that other researchers would code the participants’ quotes differently.
All participants approached for this study in conjunction with their 10-year follow-up agreed to participate. We cannot ignore the risk that patients who were satisfied with the treatment and RCT were more willing than less satisfied patients to return for follow-up, and this might have biased the sample. However, we think that that risk is quite small as the vast majority (86%; 25 of 29, 1 deceased) of patients included in the RCT in Gothenburg returned for their 10-year follow-up. The interviews were carried out by a member of the research team who had followed the participants from the start of the study. This might have affected the kind of information the participants were willing to share [
]. Their familiarity with the interviewer might have allowed them to disclose more personal and sensitive information than they would have with an interviewer they did not know. However, it might also prevent patients from admitting more negative aspects of the treatment and the aftercare provided by the surgical team. Because all interviewees in the present study were participants in a RCT, which included follow-up by more or less the same team for over a decade, the experiences reported by the present sample might not be directly transferable to MBS patients in standard care. Information about ethnicity was not systematically collected; however, all participants were of Swedish origin or from neighboring countries, resulting in an ethnically homogeneous sample.
Strengths of the present study include the long-term follow-up, the inclusion of participants with different MBS procedures, and the inclusion of both men and women. Background information about the patients, such as procedure, weight loss, complications, and personal history, were not available to the first author (K.J.) while conducting the thematic analysis. The analysis was therefore carried out with no knowledge about the interviewees beyond that presented in the interview data. This procedure made it possible to focus on how the participants talked about their long-term outcomes without evaluating what was said against other parameters such as amount of weight lost or resolution of co-morbidities. In qualitative studies participants are seen as collaborators in the quest to increase understanding of the phenomenon under study. Thus, the findings from the present study can be seen as complementary to other long-term outcome data and be used to improve interventions.
Conclusion
Ten years after surgery, patients experienced many sustained positive effects of the bariatric procedure and were grateful for having had the surgery. However, several aspects of their struggles with obesity still persisted. Findings from patients’ lived, long-term experience should be incorporated in pre- and postoperative education and care.
Most participants acknowledged a continued effect on their appetite, which could be important information to patients worrying about a lost effect after the first year post surgery. Education about increased sensitivity to alcohol after MBS is also important, as well as helping the patients to have realistic expectations, and inform about problems that may remain or arise after surgery.
We need to provide more proficient long-term follow-up after MBS, tailored to meet patients’ needs both at the surgical clinic and in primary care. Healthcare providers must realize that some patients are reluctant to seek additional care after MBS because they are afraid of disappointing the clinicians. Patients’ tendency to accuse themselves can be prevented by informing them about what kinds of struggles are expected after MBS and encouraging them to return for help when problems arise. To avoid reinforcing patients’ self-blame and to facilitate a trustful therapeutic relationship all patients must be met by healthcare professionals with a nonjudgmental and caring attitude.
Disclosures
K.J. has received speaker honorariums unrelated to the submitted article from Merck and Novo Nordisk. K.J. has been on an advisory board unrelated to the submitted article for Novo Nordisk (reimbursement directed to her institution). T.O. has received reimbursement unrelated to the submitted article from Johnson & Johnson, NovoNordisk, Merck, and Mölnlycke (reimbursement directed to his institution). M.E. has received funding from The Local Research and Development Board for Gothenburg and Södra Bohuslän (VGFOUGSB-765351).
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