Daily, chronically ill patients are challenged with disabilities related to their disease and its treatment. These do not only regard physical symptoms, but also social issues and emotional concerns. Worries concerning the loss of intestinal function control, changes in the body image, and pubertal delay add up to other reasons of distress observed in chronic disorders. The latter includes factors such as unpredictable prognosis, debility, and the general feeling of diversity (1), which may lead to a difficult psychological adaptation (2,3). Furthermore, the insight of physicians is of paramount importance during adolescence, when compliance levels typically drop, and the delicate process of transition from child to adult medicine is undertaken (4–6). Several studies on adult patients report that the physicians’ approach usually focuses on physical symptoms, often disregarding social and emotional worries (7). Research underlines the discrepancy between the scientific understanding of a disease and the subjective experience of illness, as well as the need to focus medical attention on the patient's needs rather than the doctor's. Here, we investigated the degree of concordance in the perception of health concerns between inflammatory bowel disease (IBD) adolescent patients and their physicians.
A questionnaire of 22 items, addressing both physical and psychosocial concerns, was prepared based on worries and anxieties of adolescents with IBD, as reported by previous studies (8–11). The questionnaire was administered to 3 groups: adolescent patients with IBD ages 12 to 19 years, diagnosed as having IBD (Crohn disease [CD] or ulcerative colitis [UC]); paediatric gastroenterologists belonging to the Italian Society for Paediatric Gastroenterology and Nutrition (SIGENP) experienced in dealing with IBD; and paediatric residents who completed their rotation in the Department of Paediatric Gastroenterology of the I.R.C.C.S. “Burlo Garofolo” Children's Hospital, University of Trieste. Before the questionnaire was handed out, patients were asked to express their satisfaction with the treatment received, by ranking the statement “I am happy because, since I started the treatment, I feel better” on a 5-point scale ranging from “not at all true” (1 point) to “extremely true” (5 points). Paediatricians and residents were asked to do the same, referring to their average adolescent patient with IBD. Patients were then asked to rank 22 items of concern on a 5-point scale, ranging from “not important at all” (1 point) to “extremely important” (5 points), according to the degree of effect on the quality of their everyday life. The same questionnaire was administered to a group of paediatricians experienced in treating IBD and to a group of paediatric residents. Paediatricians and residents were asked to estimate how much each item would affect the quality of an average patient's life, according to the same scale. Finally, the questionnaire was administered in a face-to-face approach, asking a paediatric gastroenterologist to apply the estimation to an individual patient, instead of an average imaginary one. This patient was simultaneously asked to answer the questionnaire autonomously. In this assessment, the paediatrician and the patient were blind to each other's answers.
Continuous data are presented as medians and interquartile ranges (IQRs) and categorical data as numbers and percentages. Differences between continuous data were evaluated with a nonparametric test (Mann-Whitney test). To compare the answers given by the 3 groups, the rankings were divided into 2 clusters, low (scores 1–3) and high (scores 4 and 5). A χ2 test was applied to evaluate differences between groups in terms of scores, sex, disease type (CD vs UC), and disease activity (Pediatric Crohn's Disease Activity Index/Pediatric Ulcerative Colitis Activity Index scores). P < 0.05 was considered statistically significant.
To safeguard the privacy of patients, informed consent was obtained during the investigation. The Scientific Technical Committee of the I.R.C.C.S. Burlo Garofolo Children Hospital expressed a favourable ethical opinion on the study on February 15, 2011, in record 1/11 prot n. 2080/A.
Fifteen paediatric gastroenterologists, 11 paediatric residents, and 28 patients took part in the study. Female patients outnumbered male patients (16 vs 12). The majority experienced CD (17 vs 11 with UC). The patients’ median age at diagnosis was 12.6 years (IQR 3.3). Their median age at the time of the test was 16.3 years (IQR 2.5). The average time between the age at diagnosis and the age of testing was 3.7 years, with no statistically significant difference between the group diagnosed as having CD and the group as having UC (P = 0.7 and P = 0.6, respectively). The demographic characteristics of patients are listed in Table 1.
As a first step, we investigated the degree of treatment satisfaction. Sixty-one percent of patients scored the statement “I am happy because, since I started the treatment, I feel better” as very or extremely true (4 or 5). Eighty percent of paediatricians and 64% of residents scored this statement with high ratings (4 or 5).
We then administered the 22-item questionnaire. Overall paediatricians and residents gave higher and more homogeneous scores than patients did. The highest average score given by patients was 3.07, by paediatricians 4.33, and by residents 4.64. The lowest average score given by patients was 1.46, by paediatricians 2.40, and by residents 2.45. We found 6 matching items when comparing the lists of concerns ranked in order of importance by patients and physicians. The patients’ number 1 item occupies the ninth position in the paediatricians’ list, whereas the paediatricians’ number 1 item does not even appear in the patients’ top 10 list. The patients’ top concerns ranked according to the degree of effect on everyday life are the following: “I am worried about undergoing surgery” (43%), “I am bothered by feeling tired often” (39%), “I am worried about being hospitalized” (36%), and “I am bothered by stomachaches and cramps” (36%). The top concerns reported by paediatricians are the following: “I am worried my appearance will change because of the treatment” (100%), “I am worried about being hospitalized” (87%), “I am sad because this disease lasts a long time” (87%), and “I am sad/angry because my illness is unfair” (87%). The top concerns reported by residents are the following: “I am worried about having to give up activities because of my disease” (100%), “I am bothered by feeling tired often” (82%), “I am worried my appearance will change because of the treatment” (82%), “I am bothered by diarrhea” (82%), and “I am bothered by stomachaches and cramps” (82%). Each group's list of concerns, drafted according to the percentage of subjects who gave a high score to the item, is listed in Tables 2, 3, and 4.
The analysis of the answers given by the patients’ population reveals no statistically significant difference on the basis of the disease type (CD vs UC). Nevertheless, the effect of asthenia is more significant in patients with CD (53% vs 18% UC), whereas patients with UC manifest more concern for diarrhea (46% vs 18% CD) and rectal bleeding (36% vs 18% CD). A comparison between the answers given by patients with active IBD and those of with inactive IBD (according to Pediatric Crohn's Disease Activity Index/Pediatric Ulcerative Colitis Activity Index scores) shows a statistically significant difference in 1 item; 75% of patients with active disease ranked “I am annoyed by having to remember to take medicine” 4 or 5, whereas only 16% of patients with inactive disease did. Even though female patients tend to provide higher scores, there was no statistically significant sex bias in the rankings. Six patient-paediatrician couples were enrolled for the face-to-face approach. The paediatrician overestimated the effect of all concerns on the patients’ everyday life.
We found a significant misalignment in the estimation of health concerns between adolescent patients with IBD and their paediatricians. Moreover, despite the agreement between physicians and patients on the positive effect of treatment, paediatricians and residents both tend to overestimate adolescent patients’ worries. The latter's adaptation to the disease could partly explain this mismatch. Adaptation is a phenomenon affecting all chronically ill patients. Additionally, we would like to highlight that most patients had a clinically inactive disease at the time of the test. Conversely, physicians usually face patients during acute phases and disease relapses, and thus daily confront the burden of the active disease. This may explain part of the discrepancy.
On top of overestimating the degree of concern, physicians do not seem to understand the qualitative dimension of their patient's main worries. In fact, only 6 items appear both in the patients’ and the physicians’ lists, which emphasise the physicians’ difficulty in understanding the patients’ perspective (18,19). The patients’ most common concerns are related to the unpredictable course of the disease. In fact, patients claim that issues such as “I am worried about undergoing surgery,” “I am worried about being hospitalized” have the strongest effect on their everyday life. Conversely, both paediatricians and residents erroneously believe that IBD adolescents are distressed by the dread that treatment may change their looks. The statement “I am worried my appearance will change because of the treatment” populates the first place in the paediatricians’ list, but it does not appear in the patients’ top 10. Interestingly, the same disagreement has been highlighted in a previous study on adult patients (10). Another significant disparity was found in relation to the effect of fatigue on daily activities. In fact, fatigue is ranked second in the patients’ list, but does not appear among the specialists’ top 10 concerns.
There was no statistically significant difference between the rankings given by patients affected by CD and those with UC. Nevertheless, systemic disorders such as asthenia have a stronger effect on the daily life of patients with CD, whereas bowel symptoms such as diarrhea and rectal bleeding have a stronger effect on the lives of patients with UC. These findings are consistent with the clinical characteristics of CD and UC reported in the paediatric literature (12).
The importance given to the statement “I am annoyed by having to remember to take medicine” by patients with active IBD (75%) compared with that given by patients with inactive disease (16%) is remarkable, but needs no further speculation.
Even though the difference was not statistically significant, female patients generally provided higher scores than male patients did. The same trend has been observed in previous analyses (13).
The rankings resulting from the face-to-face approach resemble those of the population study; the paediatrician tends to overestimate the effect of IBD on the patients’ daily lives. This suggests that the discrepancy cannot only be ascribed to the confounding factor of relating to an hypothetical “average patient,” who is—as we have discussed above—mostly in an active phase of the disease, when referred to its specialist.
Overestimating and misinterpreting IBD adolescent patients’ concerns have important implications in medical routine. On the one hand, it may lead to risks such as excessive medicalisation, which does not only imply a disproportionate recourse to treatment, but also an unnecessary health care expense. Additionally, the paediatricians’ propensity to hyperprotection is counterproductive with adolescent patients struggling for autonomy during transition to adult medicine. On the other hand, adolescents tend to underestimate their health status. The propensity to neglect one's disease has emerged from different studies on chronically ill adolescents (14,15) and is strictly connected to the decrease in compliance with treatment, which is typically observed at this age (16,17). The physician's insight into the individual patient's needs and concerns is of paramount importance in guiding the appropriate therapy.
In conclusion, a significant misalignment in the estimation of health concerns between IBD adolescent patients and their paediatricians was found. A better insight into IBD patients’ worries and concerns is fundamental for paediatricians, as is learning how to ask “what matters to you?” in addition to “what is the matter?” (18,19). Experiencing health care through the patient's eyes makes paediatricians more responsive to their patients’ needs, thus improving the patients’ quality of life and disease outcome. It is therefore essential to involve adolescents in their own health care programme, particularly when planning their transition to adult services.
The authors thank M. Fontana, “Vittore Buzzi” Children's Hospital, Milan, Italy, P. Lionetti, Department of Paediatrics, Meyer Children's Hospital, Florence, Italy, G. Torre, Hepatology, Gastroenterology, and Nutrition Unit, “Bambino Gesù” Children's Hospital, Rome, Italy, and all of the residents and paediatricians of the SIGENP for taking part in the study. The authors also thank N. Giurici, Department of Paediatrics, Institute for Maternal and Child Health I.R.C.C.S. “Burlo Garofolo,” Trieste, Italy, for critically reviewing the manuscript.
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