Inflammatory bowel disease (IBD) is a chronic pervasive illness that significantly affects a child's health-related quality of life (HRQOL). Wilcox et al (1) described and validated a new tool to measure the burden of Crohn disease and its treatment in adult patients. They concluded that the visual analog scale tool a “feeling thermometer,” was a quick and accurate assessment of the burden of Crohn disease on patients. Furthermore, they also found that physician's perceptions of the burden of disease were similar to those of their patients’.
Previous studies evaluating HRQOL in children have shown the disease to have a negative effect on body image, self-esteem, mood, and social functioning (2,3). Some studies have also sought to evaluate how well parents understand their children's quality of life by using various parent proxy reports/surveys. Various studies, including a 2001 systematic review, have demonstrated that parents often can approximate their children's HRQOL both in health and with various illnesses (4–6), including those children with IBD (7). Fewer studies have evaluated the correlates of patient and physician with regard to HRQOL in those with IBD (1,8).
We set out to determine whether a pediatric patient's HRQOL, measured by the feeling thermometer, correlates with the perceptions of the HRQOL as determined by the patient's pediatric gastroenterologist and parent(s). Additionally, we attempted to determine whether the HRQOL correlates with the patient's disease activity as determined by validated activity indices.
Pediatric patients, ages 7 to 21 years, who were diagnosed as having IBD (Crohn disease, ulcerative colitis, or indeterminate colitis) through endoscopy, were asked to participate in this study. The study was conducted from January 2011 to May 2011 during outpatient visits to 1 of 2 pediatric gastroenterologists at the Children's Hospital at Monmouth Medical Center, a community-based academic center in Long Branch, New Jersey. Additionally, their parent(s) and treating pediatric gastroenterologist participated.
This cross-sectional study is based on pediatric patients with IBD who completed feeling thermometers, a visual analog scale that measures symptom burden as well as therapeutic burden. On each survey, there are 2 thermometer illustrations, with measurement gradients ranging from 0 (representing the worst health or death) to 100 (perfect health). Each participant was asked to mark “C” on the first illustration to represent how they feel about their present health and a “P” to represent how they would feel if “they did not have IBD,” or their perfect health. The distance in “degrees” between “C” and “P” was deemed their symptom burden.
On the second thermometer illustration, the participant marked a “C” where they felt about their present therapeutic burden and then a “P” to represent how they would feel if they did not have therapeutic responsibilities (eg, taking medication, doctor appointments, blood draws, colonoscopies) and yet maintain the same health. The difference between “P” and “C” on the second illustration represented their therapeutic burden. The distance between the top of the thermometer (100, perfect health) and the “P” on the symptom thermometer was also measured.
At the end of each clinic appointment, the patient as well the parent (if both parents came to the appointment, their answers were averaged) and the doctor were asked to complete individual feeling thermometers based on their view of the patient's insight into his or her symptom and therapeutic burden. The parent(s) and doctor were blinded to the patient's results. The process was repeated if the patient made subsequent visits during the study period.
Additionally, the patient's physician completed a Pediatric Ulcerative Colitis Activity Index (PUCAI) (9) or a Short Pediatric Crohn's Disease Activity Index (S-PCDAI) (10) based on the patient's symptomatology after each clinic visit. Patients with indeterminate colitis were assessed using the PUCAI. Demographic data including age and sex of the patient were also recorded.
The above protocol was approved by Monmouth Medical Center's institutional review board, and parents were asked to give their permission, patients younger than 18 years their assent, and patients 18 years and older their consent to participate.
Descriptive statistics were used to describe the patient sample. All of the readings were used, including those cases in which patients were seen on >1 occasion. Because the thermometer results and physician scoring were not normally distributed, Spearman rank correlation coefficients (Spearman ρ) were calculated to compare responses among patients, parents, and their physicians. Significance was considered at the 0.05 level (2-tailed); SPSS 19 statistical software (SPSS Inc, Chicago, IL) was used for all data analyses.
Sixty-seven children and their families participated, resulting in 101 visits. The patients’ mean age was 15.0 ± 2.9 years (median 15.3 years), and there were 38 boys; 46 of the patients had Crohn disease and 21 patients had colitis (ulcerative and indeterminate). At the time of the study, the mean number of years since IBD diagnosis was 3.9 ± 3.1 years (median 3.1 years, range 0.08–14.3 years). Patients were taking the following medications at the time of the study: 14 infliximab monotherapy, 7 combination infliximab plus an immune modulator (5 6-mercaptopurine, 2 methotrexate), 2 prednisone, 6 budesonide, 24 5-aminosalicylic acid monotherapy, and 17 5-aminosalicylic acid with another therapy.
One 7-year-old patient did not complete her feeling thermometer during 2 visits because of her parent's perceived notion that she would not be able to comprehend the feeling thermometer. Eighty maternal and 27 paternal visit measurements were documented. Additionally, there were 4 visits, for older patients, in which neither parent was present. Consequently, the parents totaled 97 available visit measurements.
The mean perfect and present symptom score measurements for the patient, parent, and physician, as well as the respective calculated symptom burden are shown in Table 1. The mean perfect and present treatment burden score measurements for the patient, parent, and physician as well as the respective calculated symptom burden are shown in Table 2. The largest mean symptom burden and treatment burden were recorded by the parents (23.2 and 19.7, respectively).
The correlation of symptom burden among patient, parent, and physician is shown in Table 3. The largest correlation was between the parents and physician (0.64 [P < 0.001]). The correlation of therapeutic burden among patient, parent, and physician is shown in Table 4. The largest correlation was between the patients and parents (0.49 [P < 0.001]).
The PUCAI was calculated for 23 visits and yielded a mean value of 9.78 ± 2.3 and range of 0 to 40. The S-PCDAI was calculated for 78 visits and yielded a mean value of 12.3 ± 1.6 and a range of 0 to 60. When comparing the patient's symptom burden measurements with the S-PCDAI and PUCAI indices (Table 5), the largest nonparametric correlation (Spearman ρ) was with physician's measurements (0.65 [P < 0.001] and 0.69 [P < 0.001], respectively).
When the data for the 101 patient encounters were broken down by disease activity, 64 were in remission or classified as having inactive disease (15 ulcerative colitis, 49 Crohn disease), whereas 37 had active disease (Crohn: 19 mild, 10 moderate/severe; ulcerative colitis: 7 mild, 1 moderate). Given the relatively small numbers of patients in each group, the study was not powered to determine the correlation coefficients for each subgroup. When one compares those patients in remission or with inactive disease versus those with any severity of active disease, the correlation coefficients demonstrate values similar to the values provided for the patients taken as a group (Table 5). There are some interesting observations in which a marked difference appears between the active and remission groups. Specifically with respect to overall symptom burden measurements when comparing the patient versus the parent, the Spearman ρ for the inactive versus active group is 0.48 (P < 0.001) versus 0.75 (P < 0.001), respectively. In comparing the patient symptom burden versus the PCDAI, the Spearman ρ for inactive versus active was 0.25 (P < 0.09) versus 0.52 (P < 0.006). Finally, in comparing the therapeutic burden for the physician score versus the PUCAI in inactive versus active patients, the Spearman ρ values were 0.45 (P < 0.09) versus 0.90 (P < 0.002).
Health-related quality of life studies in pediatric patients with IBD have shown higher rates of depression, social isolation, and academic difficulties (11). In chronic illnesses such as IBD, it is important to try to clarify what factors are affecting the patient's quality of life and whether it is possible to alleviate such burdens. Previous studies have relied on lengthy questionnaires or interviews, which have been difficult to implement in everyday private practice. Our study used a previously validated, rapid visual analog scale to assess the quality of life in the patient but also took a novel approach in correlating the perceptions of the patient, their parents, and the physician. Few studies have looked at the relation of HRQOL among children with IBD as compared with their parents’ perceptions. In a study by Youseff et al (5), there was a trend to agreement between the 2 groups, although the P value was 0.06. A study by Loonen et al (7) found good agreement between parent and offspring for the child's symptoms, but for HRQOL assessment only related to objective states. Ours is the first study that we are aware of that examined at correlations in pediatric IBD among parent, patient, and physician, as well as with activity indices.
In terms of demographics, the study included a majority of patients with Crohn disease, which is reflective of the disease prevalence in the normal population (12). We used a minimum age of 7 years, an age at which we believed children were cognitively capable of completing the feeling thermometer. Most of the patients were accompanied by their mothers. The relative paucity of paternal surveys did not provide an adequate sample size of fathers to determine a sex difference on parental perceptions of their child's quality of life.
The mean symptom burden of 73 in our study was similar to the mean value of 70 found by Wilcox et al (1), who first validated the feeling thermometer as a measure of HRQOL in the adult IBD population. The largest mean treatment burden measurements were seen with parents, followed by the patients. The fact that these measurements were greater than those recorded by the physician may indicate a greater subjective scoring on the part of the parent and patient who “live with the disease” as opposed to that of the physician, who, although empathetic, likely viewed scoring based more on objective measures.
There was a statistically significant correlation with respect to symptom burden among the patient, parent, and physician. This correlation demonstrates an understanding of the objective symptoms the patient has (eg, abdominal pain, diarrhea frequency) as viewed by the parent and physician. This may have been influenced by the fact that a review of their symptoms was undertaken during the patient office visit immediately before completion of the survey. Similarly, Wilcox et al (1) also demonstrated a correlation between the patient's and physician's perception of health. Because the Wilcox et al study was conducted with adults, no observations were made between parental perceptions and that of the patient or physician.
The parents and the patients had a highly significant treatment burden correlation, which likely reflects the parent's empathy and understanding of the effect that medical treatment has on his or her children's lives. Interestingly, the physician had a relatively smaller perception of treatment burden, which may reflect a more goal-oriented focus in decreasing symptom burden or a difficulty in empathizing with the burden that medical therapy places on the patient.
Measured by the objective PUCAI and S-PCDAI scale, the highest correlation between disease activity and symptom burden was realized by the physician. This confirms that the physician understands how the patient's disease, as manifested by his or her symptoms affects quality of life. This is not surprising because this burden appears more objective and based on recounting of present complaints as opposed to a subjective determination of how these complaints affect the patient's feelings.
The benefit of adapting the feeling thermometer into practice is that the physician can quantitatively monitor the patient's symptom and treatment burden over time. It would further allow for reconciliation of discrepancies between the physician's and patient's perceptions of these burdens. For example, if the patient perceives a large treatment burden, the physician can inquire as to the cause. If the burden is driven by the number or frequency of the medications, then perhaps the physician could decrease the patient's pill burden.
There are several limitations to the study. There was no control group with “healthy” patients using the feeling thermometer to serve as a comparison for the IBD group; however, other studies have already addressed this issue using other HRQOL tools and noted a significant difference in HRQOL between children with IBD and their healthy peers. Additionally, we did not have the patients complete a validated IBD questionnaire, such as the IMPACT questionnaire, to see whether the different tools were similar in measuring quality of life. This was previously done by Wilcox et al (1) in the adult IBD population, and given the simplicity of the feeling thermometer and the application to children older than 7 years, we expect the same holds true in the present situation.
There were insufficient numbers of follow-up visits during the study period, thus limiting the reproducibility of the scale over time and its validation. Furthermore other potential confounders were not examined, including parents’ and patients’ catastrophizing, young children's understanding of their disease or the assessment tool, socioeconomic status, ethnicity, patient comorbidities, and as previously stated parental sex. Future studies could attempt to answer these questions as well as use this tool to determine whether treatment or symptom burdens could be successfully decreased over time.
In conclusion, the feeling thermometer is a quick, easy-to-use visual analog scale that can be implemented in everyday practice to measure a patient's HRQOL. In this study, the patient's HRQOL was highly correlated to both the physician's and parent's perceptions as well as their disease activity. Finally, future studies could determine whether the feeling thermometer can be used prospectively to measure whether the physician can decrease his or her patient's symptom and treatment burden.
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Keywords:© 2013 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,
Crohn disease; health-related quality of life; inflammatory bowel disease; ulcerative colitis