Surgery for Obesity and Related Diseases ] (2016) 00–00

Original article

Information needs among adolescent bariatric surgery patients and their caregivers Nicole M. Schneider, Psy.D.a, Carrie B. Tully, Ph.D.b, Gia A. Washington, Ph.D.a, Karin L. Price, Ph.D.a,* b

a Department of Pediatrics, Baylor College of Medicine, Houston, Texas Center for Translational Science, Children's National Medical Center, Washington, DC Received July 10, 2015; accepted October 9, 2015

Abstract

Background: Bariatric surgery is an invasive medical treatment for morbid obesity that requires behavioral maintenance for physical success. Patient knowledge, motivation, and adherence are important factors in optimizing results. Objectives: The purpose of the present study was to identify perceived informational gaps of adolescent and young adult bariatric surgery patients with morbid obesity (body mass index Z40 kg/m2). Setting: This study took place in a pediatric tertiary care academic medical center. Methods: Thirty-one adolescents/young adults who had undergone Roux-en-Y gastric bypass surgery at the authors’ institution were recruited to complete questionnaires at their postsurgical visits (Z3 months postsurgery). Seventeen caregivers also participated in this study. The questionnaire used in the present study prompted patients and caregivers to reflect on information they wish they had known before surgery; questionnaire items included multiple choice and open-ended questions. Results: Participants indicated that their informational needs were generally well met before surgery, although there were more needs noted by patients than by caregivers. Adolescent/young adult participants expressed a desire to have had more information about the necessity of taking vitamins daily and about having more gas. An association between informational needs and satisfaction was also found. Qualitative data revealed the importance of conveying cognitive-behavioral aspects of surgery to families (e.g., adherence, motivation). Conclusion: Despite most patients and caregivers being satisfied with the adolescent bariatric surgery program at the authors’ institution, informational gaps exist. Teen-friendly ways to disseminate information would be helpful in influencing patients’ satisfaction. (Surg Obes Relat Dis 2016;]:00–00.) r 2016 American Society for Metabolic and Bariatric Surgery. All rights reserved.

Keywords:

Adolescents; Young adults; Information needs; Satisfaction; Psychosocial

Recent estimates place pediatric obesity rates at 17% of the population (body mass index [BMI] percentile 485th percentile for age and gender), presenting a public health crisis [1]. Pediatric morbid obesity (BMI Z40) is a less *

Correspondence: Karin L. Price, Ph.D., Department of Pediatrics, Baylor College of Medicine, 6701 Fannin, Ste 1630, Houston, TX 77030. E-mail: [email protected]

prevalent but increasingly concerning epidemic in the United States, with 2.1% of all youth meeting criteria [2]. These individuals face serious psychosocial and medical comorbidities, and morbidly obese adolescents are 80% likely to become obese adults [3,4]. Lifestyle interventions have resulted in limited long-term efficacy with patients with morbid obesity. Bariatric surgery with adolescents has resulted in significant weight loss and metabolic and

http://dx.doi.org/10.1016/j.soard.2015.10.071 1550-7289/r 2016 American Society for Metabolic and Bariatric Surgery. All rights reserved.

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N. M. Schneider et al. / Surgery for Obesity and Related Diseases ] (2016) 00–00

cardiovascular improvements, although success rates vary [3]. Although adolescent bariatric surgery studies have shown that most patients remain obese several years postsurgery, many patients still experience long-standing benefits, including increased improvement in one’s perception of body image and decreased prevalence of depressive symptoms [4,5]. Bariatric surgery is an invasive method of treatment that requires permanent lifestyle changes in eating patterns, close adherence to medical directives, and remaining under the close supervision of a physician for an extended period of time [6]. Because the success of the intervention relies on these emotional and behavioral factors, guidelines recommend psychological assessment as a standard part of care for pediatric bariatric programs [3]. In adult populations, psychologists report delaying surgery for approximately 15% of those screened because of the patients’ significant psychopathology or a lack of understanding about the risks and postoperative requirements of surgery [7]. The literature on the psychological profiles of obese youth is small but growing; even less attention has been paid to patient knowledge, despite ethical imperatives that medical teams must assess ability to obtain assent by fully explaining the risks and benefits of surgery [8]. It is unknown what methods are best to provide and assess knowledge about surgery in adolescent patients. Patient knowledge is important for a number of reasons. Adolescent bariatric surgery research and clinical guidelines highlight the need for patients and their families to preoperatively understand the importance of adherence, which hinges upon patients understanding surgery and postoperative information [9]. In one study, 12.5% of adult bariatric patients who subsequently developed substance abuse disorders reported regret or ambivalence about their decision to have surgery and recommended that more education be provided about the risks of substance use during presurgery procedures [10]. In another study, which involved adults undergoing nonbariatric surgery, regret over medical decisions was found to correlate with poorer health outcomes, decisional conflict at the time of the decision made, and satisfaction with the information provided [11]. The decision-making process itself is also important to consider. Brehaut et al. [11] found that individuals who relied on their doctors to make their decisions had significantly more regret postsurgery. In this way, providing opportunities to gain knowledge about medical decisions and supporting patients’ autonomy to choose appear to be important in preventing decisional regret. However, to the authors’ knowledge, there is no research characterizing adolescent bariatric patient’s knowledge or decisionmaking process about surgery and permanent lifestyle change. The purpose of this study was to collect data about adolescent bariatric surgery patients’ perceptions regarding information deficits before surgery. This is an exploratory

study that will highlight specific informational needs of adolescent and young adult bariatric surgery patients. Materials and methods Participants and procedures This study took place in a pediatric tertiary care academic medical center with the Bariatric Surgery Program at the authors’ institution. The program was established at the hospital in 2004. The clinic meets once per week and is run by a multidisciplinary team including a surgeon, nurse, dietician, research coordinator, psychologists, and psychology trainees. The program requires all bariatric surgery candidates to be at least 13 years of age, have BMIs Z40, have at least 1 major obesity-related medical co-morbidity, and commit to being followed by the team for 10 years after surgery. Adolescents and young adults who are part of the program are required to come to clinic and attend a monthly support group for a minimum of 6 months before their surgery occurs, although many are involved in the program for a much longer period before surgery occurs. Readiness for surgery is determined by agreement of the multidisciplinary team, which assesses the patient’s motivation, familial support, and overall level of maturity via structured assessment and professional judgment over this extended period of time. The program requires caregivers to be active participants in their children's care, regardless of the patient’s age at the time of surgery. Of note, however, many patients who are aged Z18 years attend long-term postsurgery clinic appointments without a parent present. Preoperative/baseline information and postoperative information were collected from participants. The hospital’s institutional review board approved of the study’s protocol. Participants All Bariatric Surgery Program patients at the authors’ institution who were at least 3 months postsurgery were invited to participate in this study during a follow-up bariatric surgery appointment. All participants had Rouxen-Y gastric bypass bariatric surgery. A caregiver version of the survey was provided when patients were accompanied by a caregiver for the visit during which the survey was administered. Even for patients who were aged Z18 years at the time of survey administration, caregiver(s) were also invited to participate in study due to the nature of the Bariatric Surgery Program. Measures Because no pre-existing measure to assess information needs of adolescent bariatric patients existed, one was created. The questionnaire was developed by an expert panel comprised of the bariatric surgery program’s pediatric bariatric surgeon, bariatric surgery nurse, program dietician,

Adolescent Bariatric Surgery Patients’ Information Needs / Surgery for Obesity and Related Diseases ] (2016) 00–00

2 psychologists, and 2 advanced psychology trainees. Two questionnaires were developed as a result, with one aimed at collecting information from postsurgery patients and one focused on obtaining information from patients’ caregiver (s). Both questionnaire forms contained 20 items, with several questions having multiple parts. One multipart question focused exclusively on informational needs (Appendix A). These items identified by the expert panel were listed, and participants were asked to check those that they did not feel were adequately addressed; responses were scored simply by counting whether or not items were endorsed. Survey format included a combination of multiple choice and open-ended questions. Questionnaires were available in English and Spanish, with Spanish translations provided by certified Spanish language translators at the authors’ institution.

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authors’ institution; therefore, there is no reason to believe there is a demographic difference between the present sample group and the institution’s general patient population. The average BMI of the institution’s Bariatric Surgery Program patients is 60.0, with an average postsurgical excess weight loss of 53.4%. Demographically, the mean age of patients presenting to the clinic is 16.4 years, with a large majority being female (73.3%). The ethnic/racial breakdown of the program patient population, by selfreport, is 34.2% black, 30.8% non-Hispanic white, 28.3% Hispanic, 5.8% mixed race, and .83% Asian. On average, patients wait 234 days (7.8 months) from their initial appointment until their date of surgery. Results Informational needs assessment

Demographic characteristics at baseline A total of 31 patient participants were approached, and all (100%) agreed to enroll in the patient component of the study. Seventeen parents or caregivers participated in the study; fewer caregivers participated because many patients over the age of 18 attended clinic without a caregiver. The patient sample was largely comprised of females (77.4%, n ¼ 24). Participants ranged in age from 16 to 24 years (M ¼ 18.9 ⫾ 2.3 years). The mean presurgery BMI was 52.47 ⫾ 8.42 kg/m2. Patients completed surveys during the open recruitment for this study; therefore, time since surgery varied from 3 months after surgery to 76 months after surgery (M ¼ 36.0 ⫾ 28.2 months). Although ethnic/racial demographic characteristics of patients were not collected, they reflect the bariatric program patient population at the

Participants were asked to rate their overall satisfaction with their decision to have surgery using a 5-point Likerttype scale from 1 (not satisfied at all) to 5 (very satisfied). Adolescent/young adult participants reported a mean satisfaction score of 4.51 (range ¼ 3–5, standard deviation ¼ .97). Caregivers reported even higher satisfaction, with a mean score of 4.82 (range ¼ 4–5, standard deviation ¼ .39). Patients and caregivers were asked to identify what they would change about the bariatric program if given the opportunity. Survey responses indicated 86.7% and 76.5% of patients and caregivers, respectively, would not change anything about the program. Participants were asked to retrospectively rate their informational needs before surgery (Table 1). No single item was identified as an unmet informational need by more than one third of either sample (adolescent/young adult or

Table 1 Participant and caregiver ratings of their presurgical information gaps Survey item

Adolescent/young adult participants (n ¼ 31)

Caregivers (n ¼ 17)

Caregivers’ perceptions of participants’ needs

Surgery procedure Dietary guidelines Vitamins Physical side effects Pain Food amount tolerance Timing of eating and drinking Avoidance of carbonation Gas Voiding urgency Dangers of smoking Differences in alcohol use Avoidance of pregnancy soon after surgery Body’s absorption of vitamins and minerals Differences in body’s ability to process certain types of food Food aversions Excess skin Changes to hair Emotional/social side effects

19.4% (n ¼ 6) 22.6% (n ¼ 7) 29.0% (n ¼ 9)

5.9% (n ¼ 1) 5.9% (n ¼ 1) 11.8% (n ¼ 2)

29.4% (n ¼ 5) 17.6% (n ¼ 3) 41.2% (n ¼ 7)

16.1% (n ¼ 5) 9.7% (n ¼ 3) 6.5% (n ¼ 2) 7.7% (n ¼ 4) 25.8% (n ¼ 8) 12.9% (n ¼ 4) 3.2% (n ¼ 1) 16.1% (n ¼ 5) 16.1% (n ¼ 5) 12.9% (n ¼ 4) 22.6% (n ¼ 7) 22.6% (n ¼ 7) 19.4% (n ¼ 6) 22.6% (n ¼ 7) 19.4% (n ¼ 6)

5.9% (n ¼ 1) 5.9% (n ¼ 1) 5.9% (n ¼ 1) 0 17.6% (n ¼ 3) 5.9% (n ¼ 1) 0 0 0 5.9% (n ¼ 1) 5.9% (n ¼ 1) 5.9% (n ¼ 1) 5.9% (n ¼ 1) 0 11.8% (n ¼ 2)

5.9% (n ¼ 1) 5.9% (n ¼ 1) 11.8% (n ¼ 2) 11.8% (n ¼ 2) 23.5% (n ¼ 4) 5.9% (n ¼ 1) 0 5.9% (n ¼ 1) 5.9% (n ¼ 1) 17.6% (n ¼ 3) 0 0 11.8% (n ¼ 2) 17.6% (n ¼ 3) 11.8% (n ¼ 2)

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caregiver). Adolescent/young adult participants rated themselves as having more informational needs compared with their caregivers (t[17] ¼ 7.64, P o .001). The most frequently rated areas for which adolescent/ young adult participants stated they wished they had more information before surgery were the necessity of taking vitamins daily, having more gas, dietary guidelines, differences in the body’s ability to process food, food aversions/ the possibility of feeling sick or vomiting after eating certain foods, and changes to hair. Caregivers were asked to retrospectively rate their own informational needs before their adolescent child having bariatric surgery (Table 1). Caregivers rated themselves as not needing any additional information on a number of categories relating to physical side effects of surgery for their child. The top 2 topics by caregivers were the same 2 categories adolescents/young adults identified for themselves (i.e., having more gas, the necessity of taking vitamins daily). Caregivers also were asked to rate what information they thought their adolescent/young adult child needed more of before surgery. The most endorsed categories included necessity of vitamins, more information about the surgery procedure itself, and the tendency to have more gas. Caregivers perceived their adolescent/young adult children as needing significantly more information before surgery than the caregivers, themselves, needed. (t[17] ¼ 4.99, P o .001). Information needs were summed for each patient to generate a frequency of how many informational points each participant indicated. A two-tailed bivariate Pearson correlation was completed to examine the relationship between adolescent/young adult participants’ self-assessed information needs and satisfaction. Results indicated an association between lower satisfaction ratings and higher informational needs before surgery (r[30] ¼ –0.385, P o .05). There was no association between caregivers’ self-perceived information needs and their own satisfaction, nor caregivers’ perceptions of their adolescent/young adult children’s information needs and caregivers’ own satisfaction. Patients and caregivers were asked what they would change about the bariatric surgery program if given the opportunity. Most patients indicated they would not change anything about the program (n ¼ 28; 87.5%). A large number of caregivers also indicated they would not change anything about the program (n ¼ 14; 77.8%). Of patients and caregivers who did express a desire to change an aspect of the program, they echoed the same information needs findings (e.g., a desire to have more preparation for pain, have a former patient talk to presurgery candidates).

dispense to a peer or a parent of a child considering bariatric surgery, respectively. Thematic analysis was used to collect similarly themed responses, a qualitative method highlighted by Braun and Clarke [12]. The importance of adherence Both patients and caregivers indicated they would inform others seeking advice about surgery about the importance of following all rules and guidelines dictated by the medical team. Patients urged others to “listen to [the] doctor” and “follow all guidelines.” A similar theme emerged, with both patients and caregivers noting surgery is a tool that requires a high level of upkeep and maintenance to help lose weight, rather than it being a quick, fix-all solution. Patients explained, “you still have to put in work and do your part” and “[surgery] is a tool to weight loss, not an automatic fix.” Caregivers wrote that they would tell parents to be aware “this is a lifelong process.” Side effects were also noted by patients, and they indicated that they would tell peers about “the side effects, the diet, the sickness you get when you [aren’t] cautious.” The surgery experience as being physically and emotionally challenging Many other patient and caregiver responses centered on the idea that surgery is a challenging experience. Patients warned that surgery candidates must be “mentally prepared” and “have a strong mind.” Caregivers indicated that surgery “is a long process, a lot of work, and a big mental and physical challenge.” Results are life-changing Despite the difficult aspects of surgery noted by participants, patients and caregivers alike indicated the process can result in a big life change. Specifically, patients wrote “it was so worth it” and caregivers explained “it is beautiful for the child in the long run” and “it is a great option to resolve medical, physical, and emotional problems of your children.” Patients must make their own decision to have surgery An emerging theme in patient responses was one focused on responsibility. Patients recommended that the choice to have surgery needed to come from the candidate him or herself. They responded “[surgery] is something [a friend] need[s] to decide for themselves” and “do it if that is what you want to do.” This theme was not noted by caregivers. Caregivers should seek information

Qualitative analysis Patients and caregivers were asked to complete short answer responses regarding what advice they would

Caregivers indicated they would urge other parents of potential bariatric surgery candidates to acquire the necessary information to make an informed decision about the

Adolescent Bariatric Surgery Patients’ Information Needs / Surgery for Obesity and Related Diseases ] (2016) 00–00

process. They responded to the open-ended question by writing “be informed” and “get more info[rmation].” Discussion Despite most families being very satisfied by the Bariatric Surgery Program at the institution, both patients and caregivers identified a desire to obtain more information about logistical, dietary, physical, and psychological aspects and side effects of bariatric surgery. Compared with patients, fewer informational gaps were expressed by caregivers, both for themselves and for their children. To make efforts to close the information gap noted by participants, it would be helpful for teen-friendly methods of dissemination to be used. Previous studies have highlighted the value of using technology-based services to provide information to obese adolescents and young adults, including social media and text messaging platforms [13,14]. Given the association found between lower satisfaction rating and greater informational needs before surgery, establishing efficacious ways to educate adolescent patients about requirements and side effects of surgery is vital. Interestingly, the present study did not reveal a correlation between caregivers’ informational needs and satisfaction, although this is likely related to ceiling effects from the satisfaction variable in that group. The qualitative data highlights the desire for families to have sound knowledge of specific cognitive and behavioral-based information before surgery (e.g., adherence, coping, motivation); these findings highlight the topics psychology team members can address with patients and families. The present study appears to be one of the first to retrospectively prompt patients and caregivers to explore their perception of informational needs. It can be expected that patients and caregivers were more frank with completing an anonymous, pen-and-paper survey than they would be participating in a focus group. For this very reason, it was decided not to ask families for certain demographic information (i.e., ethnicity) that may have been perceived as a threat to the anonymity of questionnaires. Although the sample size was not particularly large, it is a good representation of the clinical population at the authors’ institution on the basis of age and gender (e.g., the study sample was 77.4% female and the program population is 73.3% female). Given the high postsurgery retention rate, it is expected the racial breakdown of the sample was also very similar to that of the present program, representing a diverse group of adolescent/young adult patients. Despite these strengths, the present study has several shortcomings. The questionnaire used in the study was created by an expert panel of multidisciplinary bariatric surgery team members because no other type of measure identifying informational needs exists. Thus, the measure’s psychometric properties, including concurrent validity, cannot be established. Another limitation of the present

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study is that the percentage excess weight loss for each individual participant was not collected; therefore, conclusions cannot be drawn about whether satisfaction and weight loss progress are related. Likewise, patients were not statistically paired with their caregivers in this study, which limits the exploration of specific trends in familybased knowledge needs. Practical aspects of bariatric clinic may also have influenced the present sample. For example, because of the clinic set up, in which pre-, post-, and longterm postsurgery patients present to clinic, the authors were not able to account for time since surgery in the present analyses. Additionally, the questionnaire was unable to be administered to any postsurgery patient who ceased followup care at the clinic or dropped out. This study highlights preliminary findings for which further exploration should be pursued and future interventions should be developed. Specifically, future directions involve exploring associations between weight loss, satisfaction, and informational needs. The literature about the association between postbariatric surgery weight loss and satisfaction is mixed and often depends on presurgical expectations; adult literature shows that many patients have vastly unrealistic expectations and desired outcomes of overall weight loss [15,16]. For adolescents who have had bariatric surgery, body satisfaction may also be related to their perceived ideal body size. Despite these expectations and preferences, adolescent research highlights significant improvements in body image perception after bariatric surgery, regardless of how much or how little weight is lost and maintained [5]. In addition to further research about satisfaction, justifying the importance of closing informational gaps, particularly as it relates to postsurgery weight loss, is instrumental in addressing barriers to success. It would also be valuable to pair patient and caregiver responses to identify how responsibility was shared in making the decision to have surgery and how much caregivers had wished they had known or their child had known before surgery. Although the study identifies postsurgery perceptions of information needs, it might also be helpful to collect similar information before surgery. Conclusion Bariatric surgery is a life-changing procedure that can result in substantial positive changes in bio-psycho-social functioning. Postsurgery guidelines include patients making a variety of behavioral changes to avoid adverse side effects and to support a healthier physical lifestyle, all of which bariatric providers attempt to convey to patients and caregivers. The present study was helpful in identifying family perspectives of information gaps, as well as revealing the inverse relationship found between postsurgery satisfaction and information needs. Clearly, exploring ways to efficaciously disseminate this information to adolescents is important in closing this information gap. The present study

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contributes to the growing body of research focused on psychosocial implications and needs for adolescent patients undergoing bariatric surgery. Disclosures The authors have no commercial associations that might be a conflict of interest in relation to this article. Acknowledgments We thank our invaluable bariatric team members: Natoya Caston, B.S.N., R.N., Kari Turybury, M.S., R.D., L.D., David Allen, M.S., and Mary Brandt, M.D. Appendix Supplementary data Supplementary data associated with this article can be found in the online version at http://dx.doi.org/10.1016/j. soard.2015.10.071. References [1] Ogden CL, Carroll MD, Kit BK, Flegal KM. Prevalence of childhood and adult obesity in the United States, 2011–2012. JAMA 2014;311 (8):806–14. [2] Skinner AC, Skelton JA. Prevalence and trends in obesity and severe obesity among children in the United States, 1999–2012. JAMA Pediatr 2014;168(6):561–6. [3] Michalsky M, Kramer RE, Fullmer MA, et al. Developing criteria for pediatric/adolescent bariatric surgery programs. Pediatrics 2011;128 (suppl 2):S65–70.

[4] Zeller MH, Reiter-Purtill J, Ratcliff MB, Inge TH, Noll JG. Two-year trends in psychosocial functioning after adolescent Roux-en-Y gastric bypass. Surg Obes Relat Dis 2011;7(6):727–32. [5] Ratcliff MB, Eshleman KE, Reiter-Purtill J, Zeller MH. Prospective changes in body image dissatisfaction among adolescent bariatric patients: the importance of body size estimation. Surg Obes Relat Dis 2012;8(4):470–5. [6] Dziurowicz-Kozlowska AH, Wierzbicki Z, Lisik W, Wasiak D, Kosieradzki M. The objective of psychological evaluation in the process of qualifying candidates for bariatric surgery. Obes Surg 2006;16(2):196–202. [7] Walfish S, Vance D, Fabricatore AN. Psychological evaluation of bariatric surgery applicants: procedures and reasons for delay or denial of surgery. Obes Surg 2007;17(12):1578–83. [8] Inge TH, Krebs NF, Garcia VF, et al. Bariatric surgery for severely overweight adolescents: concerns and recommendations. Pediatrics 2004;114(1):217–23. [9] Ibele AR, Mattar SG. Adolescent bariatric surgery. Surg Clin North Am 2011;91(6):1339–51. [10] Ivezaj V, Saules KK, Wiedermann AA. “I didn’t see this coming.”: why are postbariatric patients in substance abuse treatment? Patients’ perceptions of etiology and future recommendations. Obes Surg 2012;22(8):1308–14. [11] Brehaut JC, O’Connor AM, Wood TJ, et al. Validation of a decision regret scale. Med Decis Making 2003;23(4):281–92. [12] Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77–101. [13] Napolitano MA, Hayes S, Bennett GG, Ives AK, Foster GD. Using Facebook and text messaging to deliver a weight loss program to college students. Obesity (Silver Spring) 2013;21(1):25–31. [14] Cole-Lewis H, Kershaw T. Text messaging as a tool for behavior change in disease prevention and management. Epidemiol Rev 2010;32:56–69. [15] Kinzl JK, Traweger C, Trefalt E, Biebl W. Psychosocial consequences of weight loss following gastric banding for morbid obesity. Obes Surg 2003;13(1):105–10. [16] Magee C, Barry J, Brocklehurst J, Macadam R, Javed S, Kerrigan D. Body image perception and misperception in patients undergoing bariatric surgery. Surg Obes Relat Dis 2010;6(2):226.

Information needs among adolescent bariatric surgery patients and their caregivers.

Bariatric surgery is an invasive medical treatment for morbid obesity that requires behavioral maintenance for physical success. Patient knowledge, mo...
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