The impact of paediatric inflammatory bowel disease. Epidemiology, disease activity and quality of life Loonen, H.J.

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1 UvA-DARE (Digital Academic Repository) The impact of paediatric inflammatory bowel disease. Epidemiology, disease activity and quality of life Loonen, H.J. Link to publication Citation for published version (APA): Loonen, H. J. (2002). The impact of paediatric inflammatory bowel disease. Epidemiology, disease activity and quality of life General rights It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open content license (like Creative Commons). Disclaimer/Complaints regulations If you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible. UvA-DARE is a service provided by the library of the University of Amsterdam ( Download date: 11 Apr 2018

2 Chapterr 4.1 Paediatricianss Overestimate the Importance of Physical Symptomss upon Children's Health Concerns Hesterr J Loonen, Bert HF Derkx, and Anne M Griffiths Medicall Care: in press

3 PartPart IV Quality of Life: Different Perspectives Objective Objective Abstract t Too compare the importance of issues of concern ranked by physicians and children with inflammatoryy bowel disease (IBD). Methods Methods Ann item list consisting of 96 items-of-concern, identified by individual interviews and focus groupp sessions with 81 children with IBD, was administered to a second group of children withh IBD (n= 117) asking them to rate the importance of each item to their lives on a 7 point scale.. Twenty-one paediatric gastroenterologists experienced with treating children with IBD weree asked to mark on the same questionnaire how important they thought each item was to theirr patients. Results Results Off the top 10 most important items identified by children with IBD only 2 were ranked in the topp 10 by physicians. Most striking was the item: "having to take medication" which was scoredd number 3 by the children and did not appear in the top 50 of physicians. Physicians significantlyy overestimated the importance of 4 IBD symptoms (bothered by diarrhoea, embarrassedd by bad odour, worried about having accident in pants and worries about passing gas)) while they underestimated the importance of 3 other items (bothered by having to take medicines,, worries about future health problems and worries about weight). Conclusions Conclusions Physicians'' views of what issues and concerns are most important to children with IBD differ fromm those stated by the children themselves. Physicians overestimate the importance of physicall symptoms. Children should be included in the development phase of instruments assessingg health perceptions

4 ChapterChapter 4.1 Physicians overestimate physical symptoms Introduction n Inn paediatrics, many life-threatening diseases are now treated at the cost of a rising number off chronically ill children, often having a comparable life-expectation to the healthy population,, but suffering from several disabilities as a result of the disease or its treatment. Often,, these children are at risk of social isolation and emotional problems due to their being "differentt from others". The usual approach by physicians primarily focuses on physical impairments,, omitting the impact of disease upon social and emotional well being. Inn the development of new questionnaires, identification of items or concerns that best reflectt the quality of life (QoL) of the specific patient group is often done by physicians or psychologistss familiar or even unfamiliar with the particular disease. 1 " 3 However, awareness is growingg that health care professionals might not be the best subjects to provide items for a patientt questionnaire to measure their QoL. 4 Also, studies looking at physicians' ability to ratee the QoL of their patients have concluded that physicians cannot adequately assess their patients'' QoL. 5 " 8 Only 2 published studies report the lack of insight doctors have into the importancee of worries and concerns of an adult patient group, 9,10 and one review stating that thee same applies for paediatricians. 11 Therefore the aim of this study was to see if paediatricians,, experienced at looking after children with Inflammatory Bowel Disease (IBD), aree able to rate the patients' most important concerns. Populationn and setting Methods s AA population-based cohort of consecutive children attending the outpatient IBD clinic at thee Hospital for Sick Children in Toronto, Canada, were asked to participate in this study. Theyy were at least 8 years old and had been diagnosed with IBD more than 6 months prior to thee study. Two children refused participation (response rate 98%). Measures s AA 96-item list, which was developed from interviews and focus group sessions with 81 childrenn suffering from IBD, was administered to another 117 children with IBD, during the initiall phases of development of a disease specific QoL measure in paediatric IBD. 1 The paper-and-pencill item list was given to these children asking them to state on a 7-point visual analoguee scale how important each item is to them in their lives with the disease. No referencee to a time period was made to avoid the effect of current disease activity upon health concerns.. Children filled out the instrument by themselves. Answering modes range from 'not important'' scoring a 0, to 'very important' scoring a

5 PartPart IV Quality of Life: Different Perspectives Thee same item list was given to 21 paediatric gastroenterologists especially selected for theirr expertise in treating paediatric IBD patients, attending a symposium about paediatric gastroenterology.. They were asked to mark on the same scale how important they thought the particularr item is for their patients with IBD. Paediatric gastroenterologists were specifically askedd to think about their average IBD patient when completing the questionnaire. None of thee patients included in the study were treated by any of the participating paediatricians. Analyses s Thee 10 items ranked highest in importance by children with IBD and physicians were calculatedd based on mean scores. Differences in mean scores between physicians and children withh IBD were tested using the independent student t-test. The 95% confidence interval (CI) off the difference was used as significance indicator. Results s Childrenn completed the item list at the outpatient clinic. Patient demographics are listed in Tablee 1. There was a predominance of adolescent Crohn's disease patients. All 21 paediatric gastroenterologistss responded and filled out the questionnaire either at the symposium, or at theirr work site. Tablee 1. Patientt characteristics (n= 117) Male,, n (%) 65 (56%) Agee group, n (%) << 12 years old 26(22%) >> 13 years old 91(78%) Diseasee type, n (%) Crohn'ss disease 87 (74%) Ulcerativee colitis 30 (26%) Durationn of diagnosis, years Meann (SD) ' 3.3 (2.4) Mediann 3.0 Thee 10 most important health concerns of children and physicians are listed in Tables 2 andd 3. There was little overlap between items that children found most important and items thatt physicians thought were most important to them. Striking is the fact that only two items appearedd in both the physicians' and the children's top 10. Furthermore, the physicians' top 100 was dominated by physical symptoms (stomach aches, diarrhoea, blood in stool, passing gas),, whereas the children's was mostly occupied by worries about the future, taking medicationn and the chronic character of the disease. Rankings of items by type of disease can bee appreciated from Table

6 ChapterChapter 4.1 Physicians overestimate physical symptoms Tablee 2. Childrenn with IBD (n= 117) item top 10 ranking of importance. Itemm description Worriess about having a flare up (13) Sadd that it's a life long disease (24) Botheredd by having to take medicines (80) Worriess about health problems in the future (64) Beingg bothered by stomach aches and cramps (2) Worriess about weight (65) Stomachh aches and cramps (1) Worriess about height (41) Nott being able to do things because of disease (26) Tiredd (14) Mean n (SD) ) 3.77 (2.6) 3.66 (2.5) 3.55 (2.8) 3.44 (2.6) 3.33 (2.3) 3.22 (2.5) 3.22 (2.6) 3.22 (2.7) 3.11 (2.4) 3.00 (2.6) Range e 95%% CI between difference i physiciann and child score* Scoress could range between 0 and 7, higher scores indicate higher importance. Inn brackets is the ranking of the particular item by the physicians. ** Physicians ranked all items on average 2.0 points higher than children. Therefore, when the 95% confidence intervall (CI) of the difference did not include 2.0, the score was considered significantly different. Overall,, physicians rated all items higher importance scores than the children. Also, physiciann scores were more homogeneous than children's score, indicated by the small score rangee and small standard deviation per item (Tables 2 and 3). Mean scores by physicians were,, on average, 2.0 points higher than mean scores by children. The highest ranked item by physicianss had a mean score of 5.7, where the highest ranked item by children had a mean scoree of 3.7. Likewise, the lowest ranked item by physicians had a mean score of 2.9, which wass 0.9 for the children's lowest ranked item. Therefore, if the 95% CI of the t-test for unequall variances did not include 2.0 points (instead of the usual null hypothesis including 0) thee difference was considered statistically significant between physician and child scores. (Tabless 2 and 3) Fromm the physician top 10, four items were scored significantly lower by the children (botheredd by diarrhoea, embarrassed by bad odour, worried about having accident in pants andd worries about passing gas). Three of the top 10 items by children were scored significantlyy lower by the physicians (bothered by having to take medicines, worries about futuree health problems and worries about weight), with one item approaching significance (sadd it's a life long disease). When dividing the IBD sample by type of disease, only one item rankedd highly by physicians also appeared in the top 10 of the children with ulcerative colitis (worriedd about having surgery). Subgroup analyses by age (children under 13 years and childrenn 13 years old and older) did not show differences in item rankings

7 PartPart IV Quality of Life: Different Perspectives Tablee 3. Physiciann (n= 21) item top 10 ranking of importance. Rankk Item description Meann Range 95% CI between difference (SD)) in physician and child score* * Stomachh aches and cramps (7) Beingg bothered by stomach aches and cramps (5) Beingg bothered by having diarrhoea (34) 5.77 (0.8) 5.77 (0.8) 5.6(1.1) ) Thee way you look because of disease or treatment (15) 5.5(1.1) ) Beingg embarrassed about bad odour (51) Dislikingg tests and treatments (20) Worriedd about having an accident in pants (45) Afraidd to be admitted to hospital (19) Worriedd about having surgery (12) Worriess about passing gas (39) 5.4(1.6) ) 5.3(1.3) ) 5.2(1.5) ) 5.2(1.5) ) 5.2(1.4) ) 5.2(1.4) ) Scoress could range between 0 and 7, higher scores indicate higher importance. Inn brackets is the ranking of the particular item by the children. ** Physicians ranked all items on average 2.0 points higher than children. Therefore, when the 95% confidence intervall (CI) of the difference did not include 2.0, the score was considered significantly different. Discussion n Thiss study describes discrepancies between the ranking of importance of health concerns byy children with IBD and by physicians. Although there is an increasing awareness that a chronicc disease implies more than just physical symptoms, this study shows that physicians rankk symptoms of higher importance than children. Still, the rationale behind many studies on QoLL performed by physicians is that patients worry and suffer mainly from physical problems.' 33 Few studies so far have looked into IBD patient concerns. 13 " 17 The children in our studyy express more general worries and concerns about having the disease. Physicians also rankk all items of higher importance than do children. This can be explained by response shift, referringg to an adaptation by the children to having the disease. Although our encountered discrepanciess may not be very surprising since both samples represent different viewpoints, theyy are important for clinical practice and questionnaire development protocols. Onee possible explanation for the difference in item rankings could be the primarily therapeuticc view physicians have. Also, patients might get used to their symptoms and downplayy perception (adaptation), whereas physicians consider symptoms to remain a burden forr patients in day-to-day living. Treatment of acute inflammation in IBD is often commenced withh corticosteroids, which are known for their deleterious side effects, like moon facies, faciall acne, and buffalo hump accompanied by weight gain. Children rate these aspects very highlyy in their perception of life quality. Although physicians are generally aware of side effects,, they seem to underestimate its effect upon patient well being and they may therefore nott be likely to incorporate this aspect into their patient care

8 ChapterChapter 4.1 Physicians overestimate physical symptoms Anotherr possible explanation could be the phase in which physicians are confronted with patients.. Usually, unscheduled medical visits are accompanied by acute physical symptoms. Physicianss could therefore think these are the most important issues to their patients. In our studyy both patients and physicians were asked about general concerns in patient's lives with thee disease. This refers to time periods with, and without active disease. Children with IBD in ourr sample indicated these acute physical symptoms to be inferior to other concerns in their day-to-dayy lives with IBD. AA third explanation for the difference found in our study could be the large representation off adolescents with Crohn's disease in our patient sample. It could be that paediatricians in ourr sample were more familiar with the health concerns of children with ulcerative colitis. Howeverr when looking at the top rankings of items by disease type, the concordance between itemss on the top 10 of children with ulcerative colitis and those on the physician top 10 only improvedd one item compared with the overall IBD group. Nonee of the children in our study were treated by any of the physicians. Therefore, physicianss could have based their responses upon a different (more severely affected) populationn when completing the questionnaires. However, patients were a large consecutive cohortt of patients with a very high response rate (98%), therefore this cohort can be seen as representativee for the general IBD population seen at a tertiary centre. Likewise, the majority off participating physicians work in a tertiary centre, therefore this explanation is not likely to havee caused the encountered differences. Thiss study emphasizes the need to include patients into the item gathering and item reductionn phases when developing a new instrument assessing health perceptions. Although thiss has been recommended before, the top-down procedure is still often applied, with physicianss and researchers deciding upon the content of the instrument. Although physicians aree generally very much aware of physical complications of disease, they may underestimate thee importance of non-physical effects upon patients' health perceptions. The resulting questionnairee may therefore not truly reflect patient concerns but merely physical aspects, limitingg its validity for use in clinical studies. It is very likely that this not only applies to IBD,, but to all chronic debilitating conditions. Thee main goal of medical care for chronically ill children with a significant life expectancy iss for them to reach adulthood in a manner comparable to their healthy peers. Their physical, social,, emotional and intellectual development should be as little restricted by their chronic illnesss as possible. Assessing the child's health concerns and health perception can guide in supportingg this process optimally. Properly developed instruments including patients in the developmentt phase are the best way to obtain valid results

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10 ChapterChapter 4.1 Physicians overestimate physical symptoms References s 1.. Juniper EF, O'Byrne PM, Guyatt GH et a!. Development and validation of a questionnaire to measure asthmaa control. Eur RespirJ, 1999; 14: Lips P, Cooper C, Agnusdei D et al. Quality of life as outcome in the treatment of osteoporosis: the developmentt of a questionnaire for quality of life by the European Foundation for Osteoporosis. OsteoporosOsteoporos Int, 1997; 7: Vickrey BG. A procedure for developing a quality-of-life measure for epilepsy surgery patients. Epilepsia, 1993;34Suppl4:: S22-S Streiner DL and Norman GR. Devising the items. In: Health measurement scales: A Practical Guide to theirtheir Development and use. 2nd ed. New York, Oxford University Press, 1995: Spitzer WO, Dobson AJ, Hall J et al. Measuring the quality of life of cancer patients: a concise QL-index forr use by physicians. J Chron Dis, 1981; 34: Slevin ML, Plant H, Lynch D et al. Who should measure quality of life, the doctor or the patient? Br J Cancer,Cancer, 1988; 57: Pearlman RA and Uhlmann RF. Quality of life in chronic diseases: perceptions of elderly patients. Journal ofof Gerontology, 1988; 43: M25-M Blazeby JM, Williams MH, Alderson D et al. Observer variation in assessment of quality of life in patients withh oesophageal cancer. Br J Surg, 1995; 82: Woodend AK, Nair RC, Tang AS. Definition of life quality from a patient versus health care professional perspective.. Int J Rehabil Res, 1997; 20: Mohide EA, Archibald SD, Tew M et al. Postlaryngectomy quality-of-life dimensions identified by patients andd health care professionals. Am J Surg, 1992; 164: Eiser C and Morse R. Quality-of-life measures in chronic diseases of childhood. Health Techno! Assess, 2001;5: Griffiths AM, Nicholas D, Smith C et al. Development of a quality-of-life index for paediatric inflammatoryy bowel disease: dealing with differences related to age and IBD type. J Pediatr Gastroenterol Nutr,Nutr, 1999; 28: S46-S Moser GJ, Tillinger W, Sachs G et al. Disease related worries and concerns: a study on out-patients with inflammatoryy bowel disease. Eur J Gastroenterol Hepatol, 1995; 7: Tillinger W, Mittermaier C, Lochs H et al. Health-related quality of life in patients with Crohn's disease: influencee of surgical operation a prospective trial. Dig Dis Sci, 1999; 44: Casati J, Toner BB, De Rooy EC et al. Concerns of patients with inflammatory bowel disease. A review of emergingg themes. Dig Dis Dis Sci, 2000; 45: Maunder R, Toner B, de Rooy E et al. Influence of sex and disease on illness-related concerns in inflammatoryy bowel disease. Can J Gastroenterol, 1999; 13: Maunder RG, De Rooy EC, Toner BB et al. Health-related concerns of people who receive psychological supportt for inflammatory bowel disease. Can J Gastroenterol, 1997; 11:

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