Self-Reported Health, Self-Management, and the Impact of Living With Inflammatory Bowel Disease During Adolescence

Journal of Pediatric Nursing (2012) 27, 256–264

Self-Reported Health, Self-Management, and the Impact of Living With Inflammatory Bowel Disease During Adolescence Helene Lindfred RN, PhD a,b,⁎, Robert Saalman MD, PhD a , Staffan Nilsson c , Carina Sparud-Lundin RN, PhD b , Margret Lepp b a

Department of Pediatrics, the Sahlgrenska Academy, University of Gothenburg, Göteborg, Sweden The Institute of Health and Care Sciences, the Sahlgrenska Academy, University of Gothenburg, Göteborg, Sweden c Chalmers University of Technology, University of Gothenburg, Göteborg, Sweden b

Key words: Inflammatory bowel disease; Adolescents; Health; Self-management; Mixed-method design

Perceptions of living with inflammatory bowel disease (IBD) during adolescence were explored in a cross-sectional study with a multimethod design. The adolescents as a group described general wellbeing and ability to handle the disease, which was related to their self-reported self-esteem. However, a subgroup of adolescents with a severe disease course reported a more negative view of the impact of IBD in their daily lives. Encouraging adolescents to communicate in different ways may help professionals to identify vulnerable subgroups with impaired health and to provide more appropriate support and treatment for those most in need. © 2012 Elsevier Inc. All rights reserved.

IT CAN BE particularly demanding to live with inflammatory bowel disease (IBD) during adolescence—a critical period of physical, psychological, and social development. Lifelong health behavioral patterns may be learned and established during adolescence (Torres & Fernandez, 1995; Holmbeck, 2002), indicating that this developmental stage is a particularly important time to develop the skills and behaviors necessary for successful lifelong self-care. Self-management in relation to disease means taking responsibility for treatment and health habits to prevent the development of undesirable consequences of the disease. Coping strategies that are considered to be beneficial for feelings of competence in self-management and quality of life (QOL) in pediatric IBD include the following: knowledge about the disease, faith in the treatment, and willingness to talk about the disease (Grootenhuis, MauriceStam, Dekx, & Last, 2009; Van der Zaag-Loonen, Grootenhuis, Last, & Derkx, 2004). ⁎ Corresponding author: Helene Lindfred, RN PhD. E-mail address: [email protected] (H. Lindfred). 0882-5963/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2011.02.005

Background IBD is the collective term that includes two major subcategories of unknown etiology: Crohn's disease (CD) and ulcerative colitis (UC). IBD is characterized by an intestinal inflammation whose anatomical location and nature differ according to subcategory. UC is only localized in the colon, but in comparison with the adult-onset disease, pediatric UC is usually extensive throughout the entire of the colon. CD may occur throughout the whole gastrointestinal tract, but in pediatric CD, colon involvement occurs more frequent than in adults (Kugathasan et al., 2003). Both conditions result in ongoing or recurring symptoms that include diarrhea, abdominal pain, fever, fatigue, poor appetite, growth retardation, and/or delayed puberty (Mamula, Markowitz, & Baldassano, 2003). The incidence of IBD varies globally, with a higher and increasing incidence among children in Sweden and other countries with a westernized lifestyle and high socioeconomic standard (Hildebrand et al., 2003; Kugathasan et al., 2003). At present, a prominent hypothesis for explaining the increasing

Inflammatory Bowel Disease During Adolescence incidence of, especially, CD is that good sanitary condition in early life inhibits the immune system to develop properly (Bernstein, Rawsthorne, Cheang, & Blanchard, 2006). In approximately 20%–30% of all cases, the disease debuts in childhood or adolescence (Hanauer, 2006; Kugathasan et al., 2003). IBD often presents more aggressively in children than in adults (Turunen et al., 2009). There is currently no cure for IBD, so treatment focuses on controlling the inflammation, preventing exacerbations, and alleviating the pain and suffering accompanying the illness. Medical, nutritional, surgical, and psychosocial interventions are the cornerstones of treatment. For example, psychosocial interventions aim to provide support for the child and the parents in coping with a potentially serious disease and to reduce the psychological and social stress impact on the daily life of the family (Baldassino & Piccoli, 1999; Porto Criteria, 2005). IBD has an unpredictable course with multiple intermittent negative effects on daily life. Previous studies from international and European sites frequently note that afflicted adolescents are concerned about the impact of poor growth and an iatrogenic cushingoid appearance on their body image (Akobeng, Mirajkar et al., 1999; Loonen, Grootenhuis, Last, Koopman, & Derkx, 2002). Further, in a Canadian study of 117 adolescents with IBD, most were found to have problems at school. Frequent bowel movements and urgent toilet requirements were found to be especially intrusive in daily life (Griffiths et al., 1999). The disease may cause embarrassment and shame resulting in an impaired psychological well-being (Engström, 1999; Szigethy et al., 2005) and give rise to pronounced fatigue (Marcus et al., 2009). In a Swedish study of 20 children with IBD, Engström (1999) found that the IBD group had worse QOL than adolescents with other chronic diseases. However, in a more recent study by Marcus et al. (2009) of 70 American children with IBD, fatigue and health-related QOL were comparable with those of children with other chronic diseases such as rheumatoid arthritis and cancer. Various dimensions of self-esteem have been used for evaluating the psychological well-being of an individual. In these studies, self-esteem has been found to be an important determinant of QOL (de Boer, Grootenhuis, Derkx, & Last, 2005; Engström, 1999) and beneficial health behavior (Torres & Fernandez, 1995). Self-esteem in adolescents with IBD has recently been studied in the same cohort as in this report (Lindfred, Saalman, Nilsson, & Reichenberg, 2008). In that study, the self-esteem of these adolescents proved to fall within the same range as that of their healthy peers. However, the group of adolescents with a severe disease course was found to report lower self-esteem than those with a mild disease course. Further, adolescents with separated parents were at risk for lower self-esteem than those who had parents living together. The increasing incidence of pediatric IBD makes it all the more important for professionals to understand how these patients experience and manage the disease because these

257 factors may influence their well-being and compliance with medication (Hommel, Davies, & Baldassano, 2008). There are some studies of the impact of IBD upon children and adolescents, but the issue of adolescent self-management strategies, that is, knowledge of, responsibility for, and ability to communicate about the condition, to achieve disease control is understudied.

Purpose The purpose of this study was to explore and describe adolescents' perceptions of health, self-management, and the impact of living with IBD in daily life. An additional objective was to correlate these variables to the self-esteem of the adolescents from the same cohort recently reported (Lindfred et al., 2008).

Methods Design This is a study with a mixed-method design that combines quantitative and qualitative data collection and analysis in the same study. This design enables triangulation. Triangulation may be achieved by using various methodological aspects of the studied phenomena (Patton, 2002). These aspects consisted of a quantified self-evaluation of the health and self-management ability combined with a more inductive approach to explore experiences in daily life.

Setting and Participants All children who are diagnosed with IBD within the catchment area, the second largest city of Sweden (about 600,000 inhabitants), are followed at the Department of Paediatric Gastroenterology of a university hospital. The study was conducted at the time of visits to the outpatient clinic: acute and regular visits. All 77 adolescents (11–16 years) with IBD (for at least 6 months) who were being followed at the department were asked to participate in the study. Sixty-seven adolescents consented to be included. Sociodemographic and medical characteristics are described in Table 1. The 10 adolescents who chose not to participate showed no obvious differences in medical or sociodemographic features from the participating adolescents.

Ethical Considerations The adolescents and their parents were informed, and confidentiality was assured. Informed consent from the adolescents and permission from both parents were obtained. The Hospital Ethics Committee has approved this study (Ö 478-03).

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Data Collection A questionnaire with 12 items was derived from research that has focused on pediatric IBD, QOL, and family functioning (Akobeng, Miller, et al., 1999; Engström, 1999; Macphee, Hoffenberg, & Ferenchak, 1998). The items concerned physical and psychosocial health, health habits, impact on daily life (Akobeng, Mirajkar et al., 1999; Griffiths et al., 1999, Loonen et al., 2002). Furthermore, issues of knowledge about IBD and its treatment and other self-management strategies, such as responsibility for medication and the ability to communicate concerns about the disease (Van der Zaag-Loonen et al., 2004), were included. The questionnaire was not designed as an instrument for calculating sum scores but should be regarded as a set of disease-related questions of relevance for adolescents with IBD. The questionnaire was developed and tested on 40 adolescents at the clinic before the format

Table 1

Sociodemographic and Medical Characteristics Demographics

Adolescents Age at inclusion Gender Boys Girls Age at diagnosis Disease duration Subcategory of IBD CD UC Indeterminate colitis Disease course severity ⁎ Mild (one relapse/year or less) Moderate (N1–2 relapses/year) Severe (N2 relapses/year) Disease activity at inclusion Exacerbation † Remission Family Parental cohabitation status Cohabiting Separated SEI ‡ Upper SEI Middle SEI Lower SEI

was finalized. The questionnaire consists of 12 items measuring self-reported health with a visual analogue scale (VAS), with scores ranging from 0 to 100 mm. Each item is followed by one or two open questions and the option to respond with written comments, for example, “How would you describe your knowledge of your disease?” followed by the end points of the VAS: “I know very little” or “I know most things.” The VAS measurement is followed by the corresponding questions: “How would you describe the effects of your medication?” and “What would you do if you got worse?” The self-esteem of the adolescents enrolled in this study has been evaluated earlier with the generic self-assessment questionnaire I Think I Am (ITIA; Ouvinen-Birgerstam, 1984) and reported by Lindfred et al. (2008). The ITIA was designed for children between 10 and 16 years of age, and it covers five dimensions of self-esteem: physical characteristics, skills and talents, psychological well-being, relationships with parents, and relationships with others. Validity and reliability, as measured by internal consistency, have been shown to be adequate, with Cronbach's alpha on the total score being .71–.82 (Ouvinen-Birgerstam, 1984).

M or n (%)

Data Analysis

14.6 years

Analyses of study variables were conducted using the software SPSS 16.0 (Chicago, IL). Descriptive statistics were computed to summarize demographic and medical information. The adolescents' self-reported health (VAS) was visualized in a scatter plot to display scoring range on group level. A color spectrum was used to display individual scores and answering patterns. An independent t test was used on univariate data (diagnosis, cohabitation status, gender, disease activity) to reveal differences between the subgroups, whereas linear regression was used similarly for numeric data (disease course severity, socioeconomic status, and self-esteem; Table 2). Because there was high correlation between variables, no correction was performed. Correlation between the 12 items was performed to reveal undesired or negative correlation. All possible 66 item pairs were examined using Pearson's analyses. The perceptions that the adolescents presented in their written comments to the open-ended questions were analyzed with manifest content analysis. This is a method for analyzing written, verbally, or visually communicated meanings (Krippendorf, 2004). A combination of a summative approach and a directed form of content analysis was used to enable the identification of patterns of meaning from the specific terms or content of the written answers (Babbie, 1992; Kondracki, & Wellman, 2002). Keywords relevant to this study were identified before and during data analysis and as the procedure or coding scheme proceeded. The software NVivo 8.0 (QRS International Pte Ltd.) was used to organize the data and discern patterns. Adolescents with severe disease course were identified from our previous studies (Lindfred et al., 2008; Lindfred, Saalman, Nilsson, & Lepp,

40 (60) 27 (40) 11.8 years 2.9 years 22 (33) 42 (63) 3 (4) 25 (37) 19 (28) 23 (34) 21 (31) 46 (68)

48 (78) 19 (22) 32 (48) 21 (31) 14 (21)

Note: SEI = Socio-economic status. ⁎ The disease course severity since diagnosis of IBD was estimated at the time of inclusion using retrospective notes of patient records (Lindfred et al., 2008). † Exacerbation (relapse) was defined as an episode of symptoms that necessitated an increase in medication (Lindfred et al., 2010). ‡ Socio-occupational classification method upper SEI (entrepreneurs, lawyers, and physicians), middle SEI (civil servants and teachers), and lower SEI (unskilled and skilled workers; Erikson, 2005).

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Table 2 Evaluation of Factors According to Sociodemographic and Medical Characteristics Associated With the 12-Item VAS Measurements of the Self-Reported Health Correlations †

Mean VAS differences Self-reported health Well-being Loose stools Abdominal pain Appetite Exercise Sleeping Knowledge Responsibility Concerns Self-image School Leisure

Diagnose

Parents Cohabitation-Status

Gender

Disease Activity

UC–CD 3.9 4.5 2.4 −1.5 8.6 7.2 2.9 −1.9 4.0 −3.5 0.2 −1.9

Relapse–Remission

Disease Course Severity

Cohabiting–Separated

Boy–Girl

Socioeconomic Status

Selfesteem

−3.2 −9.7 0.2 −3.7 12.5 8.8 1.5 7.3 2.3 1.4 −1.1 −4.6

8.6 −2.7 8.0 6.4 −6.7 2.5 3.3 5.9 6.8 6.0 −0.5 3.5

−13.0 ⁎ −20.0 ‡ −15.0 ⁎ 9.1 0.3 −2.4 −2.2 −5.8 −0.1 −7.4 −0.0 −6.5

−0.18 −0.21 −0.17 −0.15 −0.08 −0.28 ⁎ 0.08 −0.16 −0.16 0.02 −0.19 −0.23

−0.15 −0.05 −0.11 0.02 −0.04 −0.27 ⁎ 0.18 0.03 0.03 0.01 −0.06 −0.04

0.29 ⁎ 0.13 0.38 ‡ 0.4 ‡ 0.38 ‡ 0.38 ‡ 0.24 ⁎ 0.11 0.17 0.4 ‡ 0.34 ‡ 0.38 ‡

Note: Independent t test was used on univariate data to reveal demographic differences between the subgroups according to sociodemographic and medical characteristics, whereas linear regression was used similarly for numeric data. High values indicate positive outcome. Mean VAS difference: Positive values of mean difference indicate that the first variable is positive. For example; mean difference of 8.6 for the gender category means that boys express higher well-being than girls. ⁎ p b .05. † Regression coefficient. ‡ p b .001.

2010). To explore the perceptions of this group in greater detail, particular attention was paid to patterns in the written comments. The software also enabled all authors to access the original data and the emerging coding schemes. This ensured transparency throughout the analysis process. Descriptions and frequencies from the text analysis are reported, and some statements are illustrated with examples of the written comments.

66 item pairs, of which abdominal pain (r = .69) and loose stools (r = .61), respectively, showed the strongest correlation with well-being. No significant correlation was found between the remaining 24 item pairs, and only 1 item was negative, implying undesired correlation. Possible predictive factors associated with the selfreported VAS scores of the items were evaluated using univariate analyses (Table 2). A significant relationship was

Findings VAS Measurements Most adolescents reported reasonably high VAS scores in all 12 items, with a median score of between 57 and 93 (maximum score of 100 for each item). However, a wide range of VAS scores were found for each question (Figure 1). Illustrated with a colorogram (Figure 2), the 12-item response pattern for each patient revealed that a subgroup of patients reported generally low scores for most items, and this indicates poorer well-being. Factors characterizing this subgroup were more severe disease course and/or ongoing relapse at inclusion. In contrast, a number of patients who achieved high VAS scores seemed satisfied with their daily life circumstances (Figure 2). In line with these findings, there were significant positive correlations among 42 of the

Figure 1 Adolescents' self-reported health, self-management, and impact of disease. The VAS (0–100) was used. High values indicate positive outcome. The median value was indicated with a line.

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H. Lindfred et al. pronounced in the group with a severe disease course. Fiftyseven percent thought that they ought to exercise more to improve their fitness. The subgroup with a severe disease course in particular reported poor physical condition due to their disease. Even some adolescents with mild disease described having poor physical condition: “Relapses makes me tired, but otherwise I'm fit” (boy, 17 years old, with mild UC). About half of the adolescents reported sleeping problems sometimes, predominantly insomnia due to disturbing thoughts, staying up too late, or being hungry. Only a few of the respondents reported disease-related causes such as pain, urgent toilet requirements, or side effects of medicines.

Figure 2 Adolescents' self-reported health, self-management, and impact of disease illustrated with the response pattern of each individual. The VAS (0–100) was used. High values indicate positive outcome, for example, less stomach pain.

found between disease activity and symptoms, such as loose stools and stomach pain, as well as well-being. Further, the adolescents' sleeping habits measured by VAS scores correlated significantly with disease course severity and socioeconomic status. Finally, almost all the 12 items of the VAS measurements listed in the disease-specific questionnaire showed significant correlation with the adolescents' reports of self-esteem that was acquired using the ITIA instrument (Table 2).

Written Comments Symptoms and Health Habits More than half of the adolescents experienced abdominal pain often or sometimes (54%). Some reported pain several times a day. Pain sometimes occurred after eating or preceded defecation or occurred at a particular time of day, such as in the morning. Some experienced pain in other parts of the body than the stomach (25%), such as headaches, back pain or joint pain, whereas 22% reported that they never had pain. Concerning dietary habits, 54% of the adolescents reported that they sometimes skipped a meal, most commonly breakfast, whereas 33% were satisfied with their dietary habits. Those who were not satisfied wanted to eat larger portions, more nourishing food, or more varied dishes. The desire to improve dietary habits was more

Knowledge, Responsibility, and Communication With Parents Most of the adolescents were pleased with the amount of information they had already received from the IBD team about the disease (72%). A small group said that they would like additional information about why they contracted the disease or how things were likely to become in the future with the treatment and side effects of medication (18%). Almost half of the group described their medication as being effective and working well (46%). An equal number felt that their medication prevented or reduced inflammation. The efficacy of medication was described as inhibiting the immune response by pacifying, healing, and/or protecting the intestine—like “pouring water on embers” (boy, 14 years old, mild UC). Most adolescents were positive about their medical treatment (85%). Only 15% expressed a negative view, especially in relation to side effects of prednisolone, which gave them a cushingoid appearance. “The prednisolone made me look like a meatball” (girl, 15 years old, with moderate UC). The group with severe disease course expressed a greater need of additional knowledge about the disease than did the rest of the group. According to the adolescents' answers, parents usually reminded their children to take their medication, particularly if the disease is severe. However, 26% of the parents from the whole group did not regularly remind their children, regardless of age. Forty-six percent of the adolescents reported that their parents often had to remind them to take their medication: “My mother puts the medicine on the table in the kitchen every morning and evening” (boy, 11 years old, with severe CD). A medical administration device was reported to be helpful for cooperating with parents about daily medication. Most of the adolescents had strategies for dealing with symptoms of relapse (86%). Only five adolescents reported that they did not know what to do. One fifth of the adolescents described an autonomous strategy of increasing medication or adding prednisolone as prescribed by their doctor in advance (21%). Adolescents could either spontaneously inform their parents when they were feeling worse (34%), or in most cases, there was ongoing two-way

Inflammatory Bowel Disease During Adolescence communication (60%). Most turned to their parents or the IBD team for support when they were concerned about the disease (77%). Of these adolescents, 34% specifically mentioned their mother, and 17% said they turned to their physician when they needed help. The adolescents with severe disease course more often turned to parents and were less prone to turn to the hospital for support. Only a few said they did not want to talk to anyone with their concerns about the disease. Self-Image and the Impact of IBD on Daily Life Almost all 67 adolescents described themselves as having positive personal qualities. These qualities were mostly related either to their ability to perform at school or in sports or to having good relations in daily life. They saw themselves as being good friends who were usually happy and whom others could depend on. Only a few described themselves in terms of their disease. For example, “My mother thinks I am stubborn when I want to exercise even when I have a bad stomach” (girl, 15 years old, with moderate UC). Some of the adolescents wanted to improve their performance at school or in sports (37%). Others reported a need to improve their social relations (12%) or their body image (12%), for example, by being more focused and organized and developing better self-confidence. A small group of adolescents were satisfied with themselves as they were (12%) and expressed themselves positively, such as, “I want to be better at everything that is good and fun and leads forward” (girl, 16 years old, with moderate UC). Most of the adolescents felt that the disease interfered with school in some way (63%). Absence from school because of the disease was reported by 30%. Absence was often due to symptoms (23%) such as abdominal pain or fatigue but also from feelings of stress or hospital visits. About one third did not think that IBD interfered with school at all. Further, a large group reported that treatment or symptoms could interfere with leisure time (64%). Some did not feel that IBD interfered with leisure activities at all (23%). Limiting symptoms were largely abdominal pain, urgent toilet requirements, and fatigue. A total of 9 girls and 3 boys reported abdominal pain to be a problem in their social lives, whereas 8 boys described lack of energy as having a negative impact on leisure activities such as football or other sports. The impact of the disease on daily life was most pronounced in the group of adolescents with a more severe disease course, especially in relation to school.

Discussion The aim of this study was to explore and describe adolescents' perceptions of health, self-management, and the impact of living with IBD in daily life. Most of the

261 adolescents in this cohort reported reasonably good health and well-being in all of the 12 VAS items of the questionnaire. Similarly, analyses of the written comments related to the 12 items suggest that adolescents who have IBD overall express well-being and ability to handle the disease in the normal course of the day. However, the wide scoring range for the various items (Figure 1) and the response pattern for each individual suggested that there was a subgroup of adolescents with a less satisfactory situation (Figure 2). This group was characterized by a more severe disease course. Their health and well-being were impaired by experiences of more frequent symptoms, disease-related poor physical condition, negative sleeping patterns, and less satisfaction with dietary habits. These findings are in accordance with earlier studies in which high disease activity has been seen to impact negatively on self-esteem (Lindfred et al., 2008) and emotional functioning (Väistö, Aronen, Simola, Ashorn, & Kolho, 2009). This is also confirmed by Loonen et al. (2002) and Marcus et al. (2009), who claim that the consequences of having a more severe disease clearly have a greater impact upon physical and psychological well-being. The analyses of the adolescents' written comments indicated that they were able to understand and manage their medication and self-care when supported by parents and health care providers. Some of them showed considerable knowledge of the effects of their medication, whereas others simply felt that the medication was effective, which suggests lower levels of knowledge. Another interesting finding was that the adolescents with a more severe disease course also expressed greater need of knowledge about the effects of medication despite the fact that they visited the hospital more frequently and therefore had better opportunities to acquire information. They also showed greater dependence on others for help and support during relapses. This may be explained by the fact that they were accustomed to requiring regular support over time because of the frequency of relapses and chronicity of the disease. Another explanation may be that they found it shameful to talk about their symptoms and therefore tended to deny them. This behavior has been reported to impact negatively upon psychological well-being (Engström, 1999; Szigethy et al., 2005). On the other hand, denial or wishful thinking may also be beneficial coping strategies for adolescents with IBD (Van der Zaag-Loonen et al., 2004). It is important to bear in mind that self-reported health consists of psychological estimations that may be influenced by unrealistically positive self-evaluation or by exaggerated feelings of personal control. The tendency to ignore problems (selective reporting) or to adapt to new situations (response shift) must be considered when estimating QOL differences between groups (Fayers & Machin, 2007). At the same time, this kind of optimism has also shown to be a predictor of good QOL (Van der Zaag-Loonen et al., 2004). Salutogenic thinking has been described as the ability to make sense of situations and thereby make them seem manageable (Antonovsky, 1996).

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Most of the adolescents described strategies that they used for handling relapse, such as asking for advice and support from parents or care providers. It seems that the more severe the disease course, the more likely they were to communicate their symptoms to parents, which would enable the development of positive, supportive relationships. Cooperation with parents is important for adolescents in managing daily medication and controlling the disease (Hommel et al., 2008). The results of this study show that parents usually remind their children to take their medication, although a quarter of the sample did not do this. No age difference was noted in this respect. However, it is possible that the frustration of having to comply with a medical regimen might encourage youngsters to take risks to be more like their healthy peers (Holmbeck, 2002). Sawyer and Aroni (2005) have described how tensions in interactions between adolescents and their parents may give rise to overprotective parental behavior. In one qualitative study, adolescents with IBD expressed feelings of ambivalence toward their parents' approaches to providing support (Reichenberg, Lindfred, & Saalman, 2007). Some of the participants in this study reported that their condition impacted considerably on their daily lives. Not surprisingly, the findings indicate that adolescents with a more severe disease course are more frequently absent from school. The impact of the disease upon daily life is more obvious in this subgroup, for which symptoms and treatment appear to affect school life more than leisure time. It is possible that adolescents with a severe disease course adapt their leisure activities to their impaired health since this is easier to do than adapting school activities. This is in line with Holmbeck's (2002) assertion that adolescents with chronic disease may feel a strong need to fit in with their peers but that doing so may pose a greater challenge to them than it does to healthy adolescents. A further aim of this study was to relate its results to the reported self-esteem of the same cohort of adolescents as measured in a previous study, which showed that adolescents with IBD expressed as good self-esteem as their healthy peers (Lindfred et al., 2008). Most of the 12-item VAS measurements of health and self-management correlated significantly with the self-esteem measurements from the previous study (Table 2). These findings suggest that adolescents' self-esteem and general well-being are related to the way in which they perceive and handle their IBD in daily life. In line with this, self-esteem has earlier been found to be an important factor for the maintenance of psychological and social health among adolescents in general (Torres & Fernandez, 1995). The health awareness that is expressed by the adolescents in this study could be important to reinforce as a means of health promotion or behavior modification in the support of this patient group.

disease. The wide scoring range for each item suggests that these items are sensitive enough to reveal the differences between individuals (Fayers & Machin, 2007). The nonverbal and more abstract format of the self-reported VAS may be more appropriate for those adolescents who are less verbal. The combination of different methods made it possible to relate findings that were generated by different data collection methods. A similar design has been used in studies of adult patients with IBD and has been found to be useful for assessing QOL or evaluating an intervention (Mieelck, Vogelmann, Schweikert, & Leidl, 2009; Oxelmark, Magnusson, Löfberg, & Hillerås, 2007). The written comments captured the way in which the participants saw themselves and included concrete examples of problems that they encountered. Apparent inconsistencies here simply portray the diversity of reality. The comments gathered in this study were brief and were not intended to provide in-depth narrative data. Similarly, the summary content analysis used in this study limits the scope for uncovering broader meanings. However, the written comments provided an important complement to the VAS scores. It is suggested that further studies using qualitative interviews are required for gaining deeper insight into the adolescents' experiences of IBD. One weakness of this study is that the adolescents were not asked to rank the importance of the different items in the questionnaire. This might have yielded valuable information, and it will therefore be considered in the designing of future studies. The strengths of this study are the high response rate (87%) and a relatively large sample size. Interestingly, a significant correlation was found between VAS scores and self-esteem, and this may support the relevance of our results and conclusions.

Methodological Considerations

Conclusion

The VAS scale was chosen to evaluate adolescents' perceptions of health and self-management and the impact of

Most adolescents with IBD in this study reported reasonably high levels of well-being and self-management.

Implications for Nursing This study suggests that a nonverbal format, such as a VAS measurement, may provide an alternative way for assessing health and self-management in adolescent IBD. Using a questionnaire at hospital visits allows health care providers to address the adolescent indirectly and thus show respect for the integrity of members of this vulnerable group. Asking adolescents to express themselves in writing yields more information and probably enhance the outcome. Encouraging adolescents to communicate in different ways may help professionals to identify subgroups with impaired health and to provide more appropriate support for both treatment and self-management.

Inflammatory Bowel Disease During Adolescence However, a subgroup of adolescents with a severe disease course reported a more negative view of the impact of IBD upon their daily lives.

Acknowledgments We would like to thank the adolescents who made this research possible. This article was supported by the Mayflower Charitable Foundation for Children and the Petter Silfverskjöld Foundation.

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