Quality of life in chronic illness: perceptions of parents and paediatriciansA J Janse, G Sinnema, C S P M Uiterwaal, J L L Kimpen, R J B J Gemke. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Arch Dis Child 2005;90:486–491. doi: 10.1136/adc.2004.051722 Aims: To investigate the differences in perception of quality of life between parents of chronically illchildren and paediatricians at diagnosis and follow up. Quality of life was assessed using the (HUI3).
Methods: Longitudinal study (July 1999–January 2002) of 37 paediatricians and 181 parents of patients (children aged 1–17 years) with cystic fibrosis admitted for a pneumonia or patients with newly diagnosed . . . . . . . . . . . . . . . . . . . . . . .
acute lymphatic leukaemia, juvenile idiopathic arthritis, or asthma. Main outcome measure waspercentage agreement on the attributes of the HUI3 between parents and paediatricians.
Results: Differences in perception of health and wellbeing between paediatricians and parents of children with a chronic disease were found, not only at diagnosis but also after a period of follow up. Differences were particularly clear in the subjective attributes emotion (range of agreement 28–68%) and pain/ discomfort (range of agreement 11–33%). In all patient groups, at baseline and follow up, the paediatrician assessed the patient to have less pain/discomfort in comparison to the parents. Despite a prolonged patient- paediatrician relationship, differences at follow up did not decrease compared to Conclusion: At the onset of a chronic disease, but also after a period of follow up, quality of life of paediatric patients may be misunderstood by healthcare professionals, especially in the subjective attributes. Systematic assessment of quality of life may contribute to better understanding between . . . . . . . . . . . . . . . . . . . . . . .
To monitor the effectiveness of clinical practice and to proxyandtoassesstheQoLoftheirchildren.Patientswith determine the efficacy of new treatment strategies acute lymphoblastic leukaemia (ALL) were chosen because general indicators of outcome are essential. Physicians the HUI has been successfully used in this group.9–11 Patients predominantly use conventional clinical, laboratory, and with juvenile chronic arthritis (JIA), cystic fibrosis (CF), and radiological measures to assess the success of an intervention asthma were included because our hospital aims to be a and implicitly estimate the wellbeing of the patient. In centre of excellence for these diseases. Furthermore, we addition to these measures the importance of quality of life expected the attributes of the HUI3 to match well with major (QoL) assessment is increasingly recognised. In randomised clinical trials QoL is becoming an important secondary We hypothesised that differences in QoL outcomes outcome.1–5 As improved treatment leads to substantial gains between parents and paediatricians would be greatest for in survival rates (for example, in most cancers and cystic the subjective attributes. We had no a priori expectations fibrosis), the prevalence of children with a chronic disease is about paediatricians over- or underestimating QoL in increasing.6 Differences in perception of the wellbeing of comparison with parents of chronically ill children.
patients between patients and their physicians may interferewith the effectiveness of treatment.7 Little is known in the literature about the differences in perception of wellbeing between paediatric patients and physicians. A recent meta-analysis showed that on more objective attributes (sensation, self-care, and mobility) the agreement between parents and (Wilhelmina Children’s Hospital, University Medical Centre physicians was higher than on attributes with a subjective Utrecht, Utrecht; Sophia Children’s Hospital, Erasmus nature (emotion, cognition, and pain/discomfort).8 However, University Medical Centre, Rotterdam; Emma Children’s none of the reviewed studies revealed the direction of the differences in perception of QoL between parents and Asthma Centre Heideheuvel, Hilversum) in the Netherlands during the period July 1999 to January 2002. Eligibility The aim of the present longitudinal study was to analyse criteria included children admitted with newly diagnosed the differences in perception of QoL between parents of ALL, children with CF admitted for pneumonia (CF-adm), chronically ill children and paediatricians at diagnosis and children with the diagnosis of JIA or asthma and their first follow up, and to describe the direction of these differences.
visit to the outpatient clinic, aged 1–17 years (patients with QoL was assessed using the Health Utilities Index mark 3 asthma, 4–17 years old), and the ability of the parents to (HUI3). In children under the age of 10 years, parents understand and read the Dutch language.
generally act as a proxy for their child. Children 10 years andolder are capable of giving reliable answers about their healthstatus. However, until the age of 17 years, parents still have acrucial role in medical decisions concerning their child. In Abbreviations: ALL, acute lymphoblastic leukaemia; CF, cystic fibrosis; these decisions, parents rely on their perception of the health CF-adm, children with CF admitted for pneumonia; HUI3, Health Utilities status of their child. Therefore, parents were asked to act as a Index mark 3; JIA, juvenile chronic arthritis; QoL, quality of life QoL was assessed using a 42 item interview questionnaire Patients were divided into four groups based on their (baseline) and a 15 item self-complete questionnaire (follow diagnosis. For each group of patients the following procedure up) developed for parents. At baseline parents completed the interview questionnaire administered by the principal inves- Absolute differences between physicians and parents for tigator (AJJ). The interview was completed during the first each attribute at baseline and at follow up were calculated week following admission (ALL, CF-adm), or after the first using the formula: attribute level physician 2 attribute level visit to the paediatricians in the outpatient clinic (JIA, parent. The outcome was dichotomised into presence (‘‘1’’) or asthma). The follow up assessment was completed after absence (‘‘0’’) of difference between physician and parent.
induction therapy, before the start of methotrexate according All outcomes zero become ‘‘0’’, all negative and positive to the SNWLK-ALL-9 protocol (ALL),12 6–8 weeks after outcomes become ‘‘1’’. Next, the percentage agreement admission (CF-adm), three months after the first visit between pairs of physicians and parents for each attribute (asthma) or six months after the first visit (JIA) in the were calculated exactly. Subsequently, the proportions of outpatient clinic. The follow up interval for each disease was differences between parents and physicians ( = percentage different and determined by the time needed for stabilisation disagreement/100) at baseline (P1) and at follow up (P2) for of the initial therapeutic effect according to consensus each attribute were calculated. The differences in proportions reached during meetings with clinical experts. In patients at baseline and follow up were given by P1–P2, 95% CI were with ALL the follow up time was determined by the SNWLK protocol.12 Following the consultation or admission of the CIs for differences in proportions that did not include 0 were patient, the paediatricians completed the Multiattribute considered statistically significant. A non-parametric test forpaired samples (McNemar test) was used to test the null Health Status classification System HUI3 (described by hypothesis that differences in perception between parents Feeny et al).13 The paediatricians completed the HUI3 and physicians were the same at baseline and at follow up.
independently from the parents. Parents and paediatricians Baseline differences in perception for pairs with and without were asked to consider the health status of each patient for missing data at follow up were tested using a x2 test (for a two way frequency table). A p value ,0.05 was considered Information from these questionnaires was converted to statistically significant. The change in the differences (delta) health state vectors in the HUI3 formats by an established for each attribute was calculated for all pairs by subtracting algorithm.14 The Health Utilities Index mark 2 and mark 3 the absolute differences at follow up from the absolute (HUI2 and HUI3) are generic multiattribute health status classification systems.13 They have been used in a number of A 10% random sample of all the collected data was taken clinical studies of children with cancer,15–25 extremely low (SPSS version 10.0), entered twice into the computer by two birth weight infants,26 27 and survivors of paediatric intensive different persons, and verified (SPSS data entry builder care.28 The HUI3 has been described in detail by Feeny and version 1.0). The error rate was acceptable with 0.33%. The colleagues.13 Briefly, it consists of eight attributes. Each SPSS statistical software (version 10.0) was used for all attribute consists of 5–6 levels representing the range of functioning from normal (1) to severely impaired (5 or 6).
The attributes forming the HUI3 system are vision (1–6), hearing (1–6), speech (1–5), ambulation (1–6), dexterity (1–6), emotion (1–5), cognition (1–6), and pain/discomfort At baseline the parents of 185 of the 187 eligible children (1–5). For example, the attribute emotion represents the gave consent to participate. Reasons for refusal were the following levels: level 1, happy and interested in life; level 2, feeling of interference with the disease (JIA, n = 1) and somewhat happy; level 3, somewhat unhappy; level 4, very psychological distress when faced with the diagnosis ALL unhappy; and level 5, so unhappy that life is not worthwhile.
(n = 1). Four other patients were excluded from furtheranalysis because the paediatricians did not return the questionnaire. The final baseline analysis included 181 Written informed consent was obtained from all parents and patients. Complete pairs at follow up were available for 145 of patients over 12 years of age who agreed to participate in of the 181 patients. Reasons for failure to participate at follow the study. The medical ethics committees of all participating up were death (1 patient), no appointment or not showing up centres approved the study protocol.
at the outpatient clinic (26 patients), and no returnedquestionnaires (6 patients and 3 physicians). Table 1 showscharacteristics of the study group.
Differences between parents and paediatricians at diagnosis and follow upFor each group of patients the percentage of pairs with exact agreement between parents and physicians is given in fig 1.
Percentage male/female diagnosis (follow up) For all patient groups the agreement for the attributes vision Diagnosis (follow up); no. of complete pairs and hearing were above 90%, in contrast to the agreement for the attributes pain/discomfort and emotion, which were low in all groups. There were no baseline differences for patients without and with missing data. The proportion of differences for the attribute pain/discomfort in patients with asthma and the attributes ambulation and emotion in patients with JIA were significantly lower at follow up than at baseline (table 2). For all other attributes no significant differenceswere found in the proportion of differences at baseline versus ALL, acute lymphatic leukaemia; CF, cystic fibrosis admitted for at follow up. Figure 2 shows the direction of the differences pneumonia; JIA, juvenile idiopathic arthritis.
in QoL perception between paediatricians and parents.
Agreement at baselineAgreement at follow up Figure 1 Percentage agreement between paediatricians and parents of chronically ill children (ALL, asthma, CF, and JIA) for each HUI3 attribute at Positive values indicate the paediatrician assessing more childhood cancer.15–20 23–25 It is known from the literature that impairment than the parents did, and negative values QoL of patients can change dramatically during treatment.
represent the parent assessing more impairment than the For example, the QoL of children with recurrent acute otitis paediatrician did. The differences for the attributes vision, media and/or chronic otitis media with effusion significantly hearing, dexterity, and cognition were relatively small and improved after surgical intervention,30 whereas the QoL of are therefore not shown. For the attribute pain/discomfort children with chronic viral hepatitis temporarily deteriorated the differences were most perspicuous. In all patient groups, during alpha-interferon therapy.31 Also, differences in per- at baseline and follow up, the parents assessed the patient to ception of QoL between parents and physicians and the have more pain/discomfort than the paediatricians thought magnitude of these differences are likely to be susceptible to change in time. In a study of adults with cancer it was foundthat the agreement for the more private domains (such as feelings, social functioning, overall QoL, and pain/discom- We have found that differences in the perception of health fort) was slightly higher at follow up than at baseline. Firstly, between parents of children with a chronic disease and their it is suggested that monitoring the patients’ QoL over time paediatricians exist at diagnosis and after a period of follow may increase the caregivers’ awareness of wellbeing of the patient.32 Secondly, the objective domains are visible and In general, the percentage agreement between parents and more concrete than the subjective domains. Therefore, a physicians for each patient group was found to be higher in higher agreement can be expected in the former.33 However, the objective than in the subjective health attributes. Our in our study the agreement did not essentially change over earlier findings from the literature showed a pooled follow up periods, although patients were treated for their percentage agreement of 84–89% for the objective attributes acute symptoms and patients and physicians became and of 69–77% for the subjective domains.8 In the present acquainted to each other. At follow up the rates of study the agreement for the attribute pain/discomfort was (dis)agreement remained fairly stable. Only for patients with remarkably low for all patient groups. For the attribute asthma (pain/discomfort) and for patients with JIA (ambula- emotion, the agreement was lower than expected from the tion and emotion) did the agreement improve at follow up.
literature.8 Probably, in our study the agreement for these We found obvious differences in four of the eight attributes.
attributes was low because most patients consulted the Paediatricians rated more emotional problems (ALL, CF, JIA) physician in the acute phase of the disease, whereas in the and problems with ambulation (JIA). Parents rated more literature the HUI has been used mostly in survivors of pain/discomfort (all patient groups) and speech impairments.
Number of pairs of disagreement at baseline Table 2 Proportion and change of differences at Number of pairs of disagreement at follow up The proportions of differences between parents and physicians at baseline (P1) and at follow up (P2) for each attribute were calculated. The differences in proportions at baseline and follow up were given by P1–P2,95% CI were calculated using the formula P Only attributes with 95% CI excluding zero were shown.
In our study we did not use the children’s’ assessment oftheir quality of life. However, for the attribute pain/ discomfort it is known from the literature that physicians have the tendency to underestimate the intensity of thepatient’s pain/discomfort.32 34–36 A possible explanation for the disagreement on speech impairment is that in young children paediatricians tend to interpret HUI level 1 as language development according to age, while parents scored level 3 as Before further interpretation of our results, some metho- dological issues need to be addressed. A strong feature of our study is that the participation rate was high and that it had very few missing data at baseline. Furthermore, we used avalidated instrument to measure quality of life as judged by both physicians and the parents. Physicians completed the assessments independent from parental HUI measurements.
Some other points need attention. Complete follow up data were available for 80% of the patients. Because the differences in perception of QoL at baseline were the same for patients with and without complete follow up data, we expect our results to be valid. Each paediatrician (n = 37) completed the HUI several times (range 1–34). In 90 patients the same paediatricians completed the assessment both at baseline and at follow up. Due to a learning effect of the paediatrician the percentage agreement in this study might be higher than would have been found in regular clinical practice. The HUI has been validated originally for children of 6 years and older.13 For young children only a few QoL questionnaires are available (Functional Status, RAND, and the TAPQOL).37–39 In a study assessing the health status in a heterogeneous population of children admitted to intensive care, it seemed feasible to classify children over 1 year of age reliably, using the HUI by an observer well known to the patient.40 In our study the HUI3 questionnaire was adminis- tered to the parents by an interviewer at baseline and wasself-completed at follow up while the HUI3 was self- completed by the paediatricians (both assessments). In the literature different results are reported about the effect of the Grootendorst et al found that subjects participating in the Ontario Health Study, completing the interviewer adminis-tered form, reported less dysfunction than subjects complet- ing the self-reported form.41 However Verrips et al reported that the mean number of affected attributes was higher and the mean utility score was lower when children (pretermborn infants now 14 years old) and proxies were interviewed Figure 2 Number of pairs of disagreement between paediatricians than when they self-completed the questionnaire.27 Both and parents of chronically ill children (ALL, asthma, CF, and JIA) for studies used the HUI3 to assess the health status. In our the HUI3 attributes speech, ambulation, emotion, and pain/discomfort.
The HUI3 attribute levels of the parents were subtracted from the levels study the participating paediatricians preferred the self- of the paediatricians. The positive bars represent the number of pairs completed form because of their time schedule at the for each attribute where the paediatrician scored a higher level of impairment within attributes than the parent at baseline (1; black) and With regard to the implications of our study, we conclude at follow up (2; dark grey). The negative bars represent the number of that QoL should be given a fair amount of attention in pairs where the parent scored a higher level of disturbances within chronic paediatric illnesses. Good medical practice requires attributes than the paediatrician at baseline (1; grey) and at follow up an optimal relationship between physicians, patients, and N Little is known in the literature about the differences in N Clear differences in perception of health and wellbeing perception of quality of life between patients and between parents of children with a chronic disease and N Objective attributes of health had a higher agreement N In all patient groups, the physicians assessed the between parents and physicians than the more patient to have less pain/discomfort than the parents N The magnitude of the difference in perception of quality N Quality of life may contribute to better understanding of life between parents and physicians is unknown parents for mutual understanding of the impact of the 7 Cleeland CS, Gonin R, Hatfield AK, et al. Pain and its treatment in outpatients with metastatic cancer. N Engl J Med 1994;330:592–6.
disease. Whatever the reasons for discrepancies of perception, 8 Janse AJ, Gemke RJ, Uiterwaal CSPM, et al. Quality of life: patients’ and physicians should be aware that parents and physicians may doctors’ don’t always agree. A meta-analysis. J Clin Epidemiol look differently at the impact of the disease. This is 9 Feeny D, Leiper A, Barr RD, et al. The comprehensive assessment of health particularly important for discrepancies pertaining to the status in survivors of childhood cancer: application to high-risk acute attributes emotion and pain, which are vital to the child’s lymphoblastic leukaemia. Br J Cancer 1993;67:1047–52.
wellbeing. Physicians have the tools to improve on this, by 10 Felder-Puig R, Frey E, Sonnleitner G, et al. German cross-cultural adaptation of the Health Utilities Index and its application to a sample of childhood cancer better and more explicitly discussing these issues with survivors. Eur J Pediatr 2000;159:283–8.
patients and parents. As differences in perception of QoL 11 Barr RD, Furlong W, Dawson S, et al. An assessment of global health status in between parents and physicians may be different for various survivors of acute lymphoblastic leukemia in childhood. Am J Pediatr HematolOncol 1993;15:284–90.
countries/populations, replication studies are needed. QoL 12 stichting nederlandse werkgroep leukemie bij kinderen. Protocol SNWLK- evaluation may have a prominent role in assessing the ALL-9. Onderzoek en behandeling van kinderen met Acute Lymfatische changes of a patient’s condition in the natural course of the disease or in the follow up of therapeutic interventions. In 13 Feeny DH, Torrance GW, Furlong WJ. Health Utilities Index. In: SpilkerB, ed.
Quality of life and pharmacoeconomics in clinical trials, 2nd edn.
this way, better mutual understanding of perception of QoL Philadelphia: Lippincott-Raven, 1996:239–52.
between physician and the parents of the patient may 14 Feeny DH, Furlong WJ, Torrance GW, et al. Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Med Care2002;40:113–28.
15 Barr RD, Pai MH, Weitzman S, et al. A multi-attribute approach to health status measurement and clinical management-illustrated by an application to We are grateful to all parents of the patients and all clinicians of the brain tumors in childhood. Int J Oncol 1994;4:639–48.
16 Billson AL, Walker DA. Assessment of health status in survivors of cancer.
participating centres for their efforts of taking part in this study.
Special thanks are extended to E Visser and I van der Vaart, research 17 Feeny D, Leiper A, Barr RD, et al. The comprehensive assessment of health nurses Sophia Children’s Hospital, for their practical help, and to C status in survivors of childhood cancer: application to high-risk acute Tims for her assistance with the data management.
lymphoblastic leukaemia. Br J Cancer 1993;67:1047–52.
18 Felder-Puig R, Frey E, Sonnleitner G, et al. German cross-cultural adaptation . . . . . . . . . . . . . . . . . . . . .
of the Health Utilities Index and its application to a sample of childhood cancersurvivors. Eur J Pediatr 2000;159:283–8.
19 Glaser AW, Davies K, Walker D, et al. Influence of proxy respondents and A J Janse, J L L Kimpen, Department of Paediatrics, Wilhelmina mode of administration on health status assessment following central nervous Children’s Hospital, University Medical Centre Utrecht, Netherlands system tumours in childhood. Qual Life Res 1997;6:43–53.
G Sinnema, Department of Paediatric Psychology, Wilhelmina 20 Glaser AW, Abdul Rashid NF, U CL, et al. School behaviour and health status after central nervous system tumours in childhood. Br J Cancer Children’s Hospital, University Medical Centre Utrecht, Netherlands C S P M Uiterwaal, Julius Centre for Health Sciences and Primary Care, 21 Trudel JG, Rivard M, Dobkin PL, et al. Psychometric properties of the Health University Medical Centre Utrecht, Netherlands Utilities Index Mark 2 system in paediatric oncology patients. Qual Life Res R J B J Gemke, Department of Paediatrics, VU University Medical 22 Barr RD, Petrie C, Furlong WJ, et al. Health-related quality of life during post- induction chemotherapy in children with acute lymphoblastic leukemia in Role of the funding source: the sponsors of this study had no role in study remission: an influence of corticosteroid therapy. Int J Oncol 1997;11:333–9.
design, data collection, data analysis, data interpretation, or writing of 23 Barr RD, Simpson T, Whitton A, et al. Health-related quality of life in survivors of tumours of the central nervous system in childhood—a preference-basedapproach to measurement in a cross-sectional study. Eur J Cancer 24 Glaser AW, Furlong W, Walker DA, et al. Applicability of the Health Utilities Index to a population of childhood survivors of central nervous system tumours in the U.K. Eur J Cancer 1999;35:256–61.
25 Le Gales C, Costet N, Gentet JC, et al. Cross-cultural adaptation of a health 1 Rowbothan M, Harden N, Stacey B, et al. Gabapentin for the treatment of status classification system in children with cancer. First results of the French postherpetic neuralgia: a randomized controlled trial. JAMA adaptation of the Health Utilities Index Marks 2 and 3. Int J Cancer Suppl 2 Mant J, Carter J, Wade DT, et al. Family support for stroke: a randomised 26 Saigal S, Feeny D, Rosenbaum P, et al. Self-perceived health status and controlled trial. Lancet 2000;356:808–13.
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39 Fekkes M, Theunissen NC, Brugman E, et al. Development and psychometric 34 Hodgkins M, Albert D, Daltroy L. Comparing patients’ and their physicians’ evaluation of the TAPQOL: a health-related quality of life instrument for 1-5- assessments of pain. Pain 1985;23:273–7.
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36 Sneeuw KC, Aaronson NK, Sprangers MA, et al. Evaluating the quality of life 41 Grootendorst PV, Feeny DH, Furlong W. Does it matter whom and how you of cancer patients: assessments by patients, significant others, physicians and ask? Inter- and intra-rater agreement in the Ontario Health Survey. J Clin nurses. Br J Cancer 1999;81:87–94.
Clinical Evidence—Call for contributors Clinical Evidence is a regularly updated evidence-based journal available worldwide both asa paper version and on the internet. Clinical Evidence needs to recruit a number of newcontributors. Contributors are healthcare professionals or epidemiologists with experience inevidence-based medicine and the ability to write in a concise and structured way.
Areas for which we are currently seeking authors: N Child health: nocturnal enuresisN Eye disorders: bacterial conjunctivitisN Male health: prostate cancer (metastatic)N Women’s health: pre-menstrual syndrome; pyelonephritis in non-pregnant womenHowever, we are always looking for others, so do not let this list discourage you.
Being a contributor involves: N Selecting from a validated, screened search (performed by in-house Information Specialists) epidemiologically sound studies for inclusion.
N Documenting your decisions about which studies to include on an inclusion and exclusion N Writing the text to a highly structured template (about 1500–3000 words), using evidence from the final studies chosen, within 8–10 weeks of receiving the literature search.
N Working with Clinical Evidence editors to ensure that the final text meets epidemiological N Updating the text every six months using any new, sound evidence that becomes available.
The Clinical Evidence in-house team will conduct the searches for contributors; your task issimply to filter out high quality studies and incorporate them in the existing text.
N To expand the topic to include a new question about once every 12–18 months.
If you would like to become a contributor for Clinical Evidence or require more informationabout what this involves please send your contact details and a copy of your CV, clearlystating the clinical area you are interested in, to Klara Brunnhuber (kbrunnhuber@bmjgroup.com).
Clinical Evidence also needs to recruit a number of new peer reviewers specifically with aninterest in the clinical areas stated above, and also others related to general practice. Peerreviewers are healthcare professionals or epidemiologists with experience in evidence-basedmedicine. As a peer reviewer you would be asked for your views on the clinical relevance,validity, and accessibility of specific topics within the journal, and their usefulness to theintended audience (international generalists and healthcare professionals, possibly withlimited statistical knowledge). Topics are usually 1500–3000 words in length and we wouldask you to review between 2–5 topics per year. The peer review process takes placethroughout the year, and our turnaround time for each review is ideally 10–14 days.
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High-frequency repetitive transcranial magnetic stimulation decreases cigarette smoking

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