Children s Self-Report of Symptoms and Anticipation for Symptom Change: Comparative Study of Hospitalized Oncology and Surgical Patients

Transcription

1 Children s Self-Report of Symptoms and Anticipation for Symptom Change: Comparative Study of Hospitalized Oncology and Surgical Patients Belinda Goodenough, PhD, MAPS Tara Craft, MPsychol(Clin) ABSTRACT. The Memorial Symptom Assessment Scale for children was used to investigate quantitative relationships in child patient s current experience of eight specific symptoms (pain, tiredness, nausea, itch, worry, sadness, insomnia, anorexia), retrospective expectations, forward appraisals of symptom change, help-seeking behavior, and a psychological measure of locus of control. Children with cancer were compared with an age-sex matched cohort of general surgical inpatients (mean age 11.3 years, n = 32). Oncology patients reported fewer symptoms than surgical patients, but had higher prior expectations, and were less likely to anticipate symptom improvement (especially if having a stronger internal locus of control) or talk to a health professional about symptoms. It is concluded that forward appraisals of symptom change add a useful dimension to assessments for children during periods of hospitalization. [Article copies available for a fee from The Haworth Document Delivery Service: HAWORTH. address: <docdelivery@ haworthpress.com> Website: < by The Haworth Press, Inc. All rights reserved.] KEYWORDS. Cancer, children, symptoms, self-report, expectation, Memorial Symptom Assessment Scale INTRODUCTION In response to the scarcity of self-report data on symptoms in pediatric oncology, Collins and colleagues adapted the Memorial Symptom Assessment Scale for school-aged children (MSAS 7-12). 1 It targets eight key symptoms on physiological and psychological dimensions: Belinda Goodenough, PhD, MAPS, is Research Psychologist, Centre for Children s Cancer & Blood Disorders, Sydney Children s Hospital, Randwick, NSW 2031, Australia, and is affiliated with the School of Psychology, University of New South Wales, Sydney NSW 2052, Australia ( b.goodenough@unsw.edu.au). Tara Craft, MPsychol(Clin) is Clinical Psychologist, School of Psychology, University of New South Wales, Sydney NSW 2052, Australia. Address correspondence to: Belinda Goodenough, PhD, MAPS, at the above address. The authors acknowledge financial support from Coles Supermarkets Australia for the Behavioural Science and Psychosocial Research Programme. The authors thank the following for advice and assistance: Rick Richardson and Jenny Suneson (Psychology, UNSW), Phill Grant, Helen Knox, Anne Senner and fellow nursing, medical and clerical staff at the Sydney Children s Hospital. A portion of these results were presented at the 6th International Symposium on Pediatric Pain (15-19 June 2003, Sydney, Australia) and the 9th meeting of the International Psycho-Oncology Society, Copenhagen, Journal of Cancer Pain & Symptom Palliation, Vol. 1(2) 2005 Available online at by The Haworth Press, Inc. All rights reserved /J427v01n02_02 3

2 4 JOURNAL OF CANCER PAIN & SYMPTOM PALLIATION pain, nausea, tiredness, insomnia, anorexia, worry, sadness and itch. The scale collects useful retrospective information on multiple dimensions; namely, the duration, severity and associated distress for each symptom over the preceding two days ( yesterday or today ). The MSAS 7-12 has been shown to be reliable and valid for children aged as young as 7 years receiving treatment for cancer, and is also recommended for older patients (e.g., young adolescents) when a short-format self-report is desired. As with most self-report symptom scales for children, the MSAS 7-12 does not include appraisals projecting forward in time. That is, whether change in a currently experienced symptom is expected in the short-term (for better or for worse). Studies of symptom report in childhood (e.g., pain), and associated age-appropriate scales, have focused on either experience now or a child s expectations prior to an event while asymptomatic. Examples are research into the concordance between a child s predicted and reported pain ratings prior to a needle-related encounter. 2,3 Forward appraisals of possible symptom change are largely overlooked in pediatrics, especially in oncology. Yet the relationship between current (or recent) symptom experience and anticipation for symptom change may be useful for understanding a child s perception of quality of life in the cancer context in the immediate short term. Such data may also be useful for helping to understand a child s perception of agents of change for symptom relief (e.g., self, parent, health professional). Despite the paucity of quantitative data, an insightful qualitative study has been conducted using open-ended interviews with 39 child cancer patients (4 to 18 years) and their parents. 4 It was found that children expected to suffer a wide array of symptoms during the cancer trajectory and without promise of relief a theme summarised as short-term pain for long-term gain. Furthermore, concerning symptom assessment, some children indicated disinterest in using global scales to give a single number to summarise symptom experience (e.g., an analog or faces scale to rate pain), and also expressed dissatisfaction with requests to define which symptom experience was the most difficult to bear (with children frequently using the phrase they all suck ). The authors suggest that, from a child s perspective, assigning a number or level to a particular symptom could not capture how they truly felt (pp. 496). 4 Based on their qualitative observations, Woodgateand colleagues suggest that one clinicalimplication for symptom assessment in childhood cancer is for healthcare providers to move beyond simple self-report scales for children (e.g., pain, nausea) and to address expectations and meanings of symptom experiences and symptom containment. Given that such assessments are likely to be implemented if routine standard methods are available, it seems timely to explore whether richer quantitative self-estimates that include forward appraisals of symptom experience in child cancer patients are possible or useful. The present study addresses this gap in knowledge in symptom self-report in pediatric oncology. The format of the MSAS 7-12 was used to explore the relationship between children s self-reports of symptoms and aspects of symptom appraisal in two directions. Firstly, the child s retrospective expectations, e.g.,for achildwho feelspaindidtheyexpectto feel pain? Secondly, the child s anticipated short-term change for a symptom(over the next 24 hours), e.g., for a child bothered by fatigue do they anticipate feeling the same, more or less tired tomorrow? Hospitalized children (minimum age 7 years) were sampled in two symptomatic groups: (a) receiving treatment for cancer, and (b) recovering after elective surgery (no malignant illness). Each child completed the MSAS 7-12 to rate the duration, severity and associated distress for each of eight symptoms, and also gave a global rating for each symptom using an age-appropriate visual analog scale. For those symptoms endorsed on the MSAS 7-12, children completed a short appraisal questionnaire addressing three areas: whether they had expected to experience each symptom they had endorsed, whether they expected each symptom to feel the same, better or worse over the next 24 hours, and whether the child had spoken with an adult (and who) about the experience of that symptom.

3 Belinda Goodenough and Tara Craft 5 Finally, children completed a psychological measure of locus of control in order to estimate whether the child tended to evoke internal ratherthanexternalagentsofchangeforevents. The rationale for sampling cancer and general surgical patients was twofold. Firstly, a general hypothesis was derived on the basis of the cited qualitative interview study which showed cancer families resigned to extended suffering without symptom relief: 4 Relative to acute conditions (e.g., appendectomy), children receiving aggressive sustained medical treatment for serious chronic disease (e.g., cancer) would have higher retrospective expectations for symptoms and lower expectations for shortterm future improvements. Secondly, chronic rather than acute illness experience is more likely to induce an external locusofcontrol 5 withtreatmentsandsymptoms perceived as beyond control of the patient. By including a standard measure for locus of control, the study provided an opportunity to investigate the possible relationship between this psychological construct and other factors which potentially index perceived agents or prospects of change in symptoms; namely, talking to an adult about symptoms) and appraisal of symptoms as staying the same over the next 24 hours. In line with the qualitative theme of resignation to suffering, 4 it was speculated that helpseeking behavior (i.e., talking to an adult) and locus of control factors may have a different relationships to parameters of symptom experience when comparing cancer and surgical patients. This study tested the following specific hypotheses: Cancer patients would be less likely than surgical patients to speak with adults about symptoms. Locus of control scores would be more closely tied to help-seeking behavior appraisals of change in symptoms for surgical rather than cancer patients. METHODS Participants and Institutional Setting All patients were sampled from the Sydney Children s Hospital (SCH), Randwick, which provides pediatric healthcare in metropolitan Sydney, Australia, and is affiliated to the University of New South Wales (UNSW), Sydney. The Centre for Children s Cancer and Blood Disorders(CCCBD) is a specialist pediatric hematology and oncology unit within SCH. Each year, the CCCBD receives approximately 100 new cancer patients from New South Wales, as well as nationallyand parts of the South Pacific. Children were sampled from relevant inpatient wards in two groups: (a) on active treatment for cancer, or (b) had elective surgery in the preceding 48 hours for a non-malignant condition. As inclusion criteria for the study, all of the cancer patients were hospitalised for an active chemotherapy cycle, none had relapsed disease, none had experienced surgery during the current hospitalization, and none were undergoing or being prepared for stem cell transplant. The elective surgery patients were sampled from concurrent admissions over the same four-month recruitment period for the cancer patients, and were purposively selected to match the cancer patients in age and sex. For both inpatient groups, all children were of minimum age 7 years and competent in English (to ensure cognitive skills sufficient to complete study materials), with no known evidence for cognitive compromise or verbal impairment. Measures Memorial Symptom Assessment Scale 7-12 years (MSAS 7-12) 1 This scale assesses eight symptoms: tiredness, sadness, itchiness, pain, worry, anorexia, nausea and sleep. Each symptom is firstly rated in binary fashion on whether it has been experienced today or yesterday (yes/no), and then on three dimensions: duration (very short time, half the time, almost all the time), severity(little bit, pretty/medium, really), and distress (not at all, little bit, medium/quitea bit, very much). To enhance parity with the appraisal items (see below), the option not sure was permitted.

4 6 JOURNAL OF CANCER PAIN & SYMPTOM PALLIATION Symptom Appraisal Scale Devised by the investigators, this scale paralleled the eight-symptom structure of the MSAS For each symptoms, there were three appraisal items: (1) Retrospective expectation over the previous 48 hours: Did you expect to feel symptom>? [ yes, no, maybe, not sure ]; (2) Anticipated change for the next 24 hours: How do you think <symptom> will feel tomorrow? [ same, less [feel better], more [feel worse], not sure ]; (3) Help-Seeking: Did you talk to an adult about feeling <symptom> [no,yes(doctor,nurse,other)]. Coloured Analogue Scale (CAS) 6 For each symptom, global magnitude intensity ratings were obtained using a pediatric derivative of the visual analogue scale. The CAS is a thermometer-style vertical scale using changes in shape and color to move from narrow/pink on the bottom ( no <symptom> ) to wide/red at the top ( most <symptom> ).After defining the symptom anchor points, the child moves a central slider along the scale the final position scored by a ruler on the reverse (0.0 to 10.0). The CAS has been used with children as young as five to rate different aspects of painintensityandaffect, 7 iseasilyadministered to understood by children, 6 and was adapted in this study as the best available VAS-derivative for generic symptom self-report ratings by children. Nowicki-Strickland Internal-External Control Scale for Children 8 This 40-item scale for children aged 7 years and above, with a yes-no response format, assesses locus of control in a wide variety of interpersonal and motivational areas, including affiliation, achievement and dependency. Estimates of internal consistency range from.63 to.81, with useful data on divergent and convergent validity. 9 Items are summed, whereby responses indexing an external locus of control are scored 1, yielding a summed total in the range of 0(internallocus) to 40(external locus). Procedure In accord with institutional ethical guidelines, signed consent was obtained from the parent with verbal assent from the child. Children completed study materials without parent input, receiving only investigator assistance as needed (the case for two bed-bound children in prone position where questionnaires were read aloud). Measures were administered in the following order: MSAS 7-12, symptom appraisal scale, and Coloured Analogue Scale for each symptom, and then the locus of control scale. The investigator used a standard proforma to record relevant demographic details, including diagnosis, treatment and last medication administered (if any). The investigator collecting symptom reports (author TC) was not in a clinician-patient relationship and was not involved in symptom management interventions. RESULTS Sample Characteristics Full data sets were obtained for thirty-two children meeting study inclusion criteria over a four-month sampling period, with complete age-sex matching across the two patient cohorts. The surgical group (n = 16: eight boys, eight girls, mean age 11.3 years) comprised appendectomy (six patients), orthopaedic (five), and soft tissue surgery, e.g., fundoplication (five). The cancer group (n = 16: eight boys, eight girls, mean age 11.1 years) comprised leukaemia (nine acute lymphoblastic, one acute myelocytic), lymphoma (two Hodgkin s, one non-hodgkin s T-Cell), and sarcoma (two Ewings, one mosenchymal chondrosarcoma). Cancer patients were recruited during an active chemotherapy cycle needing hospitalization, either first induction for remission (ten patients), re-induction of remission (three), or maintenance therapy post-remission (three). Three cancer patients had undergone previous tumor resection, but none had surgery during the current hospital visit.

5 Belinda Goodenough and Tara Craft 7 Symptom Prevalence Table 1 lists the proportions of children endorsing each symptom. For cancer patients, the most frequently reported symptoms were, in rank order: tiredness (56% of children), insomnia (44%), worry (38%), anorexia (38%), nausea (31%), pain (31%), itch (25%), and sadness (19%). For surgical patients, the most frequently reported symptoms were, in rank order: pain (100% of children), tiredness (88%), nausea (69%), worry (50%), insomnia (50%), itch (44%), sadness (31%), and anorexia (0%). The vast majority of children endorsed multiple symptoms with a mean tally of 4.3 (median = 4). Analysis of Variance (ANOVA) confirmed that the cancer group tended to endorse slightly fewer symptomsoverallthandidsurgicalpatients(mean 3.3 versus 5.3), F(1,31) = 8.214, p =.008. Hypothesis 1: Cancer Patients Would Have Higher Retrospective Expectations for Symptoms, and Lower Expectations for Short-Term Future Improvements. Symptom Expectations Table 1 lists the proportions of patients retrospectively reporting that they expected to feel each of the symptoms endorsed on the MSAS On average, children indicated prior expectations for only around half of the symptoms they actually reported as having experienced overtheprevious48hours(meannumberofexpected symptoms was 1.9, median = 2). Analysis of Variance (ANOVA) confirmed that cancer patients expected a greater percentage of their symptoms overall in comparison to the surgical patients (58% versus 44%), F(1,30) = 7.540, p =.010. With regard to specific symptoms, chi-square analysis indicated significant group differences in the direction of the general hypothesis for pain, nausea, and insomnia. All cancer patients who reported pain had expected pain, while only 70% of surgical patients had expected their pain, χ 2 (1,3) = p =.001. Significantly more cancer than surgical patients (80% versus 18%) expected their symptom of nausea, χ 2 (1,3) = 9.58 p =.048. None of the surgical patients who reported insomnia had expected difficulty sleeping, as compared with 43% of cancer patients, χ 2 (1,3) = 6.00 p =.050. One significant finding in the reverse direction of the general hypothesis concerned anorexia: more surgical than cancer patients expected to experience their negativechangeinappetite,χ 2 (1,3)=8.08p=.044. Anticipated Symptom Change for the Next 24 Hours Table 1 lists the numbers of symptomatic children who predicted that their symptom ex- TABLE 1. Symptom prevalence, MSAS 7-12 characteristic ratings, expectations and appraisal for change. Experience Symptom? n(%) yes MSAS 7-12 ANALOG APPRAISAL (TOMORROW) Duration mean Severity mean Distress mean Global Rating mean Expected Feel Same symptom Feel Better n(%) yes n(%) yes n(%) yes Feel Worse n(%) yes Unsure n(%) yes Spoke to adult n(%) yes Tired Cancer 9 (56%) (33%) 2 (22%) 4 (44%) 3 (33%) 0 (0%) 5 (56%) Surgical 14 (88%) (57%) 0 (0%) 11 (79%) 2 (14%) 1 (7%) 11 (79%) Sad Cancer 3 (19%) (66%) 2 (66%) 1 (33%) 0 (0%) 0 (0%) 3 (100%) Surgical 5 (31%) (40%) 1 (20%) 2 (40%) 2 (40%) 0 (0%) 4 (80%) Itch Cancer 4 (25%) (50%) 1 (25%) 1 (25%) 0 (0%) 2 (50%) 2 (50%) Surgical 7 (44%) (43%) 2 (27%) 4 (57%) 0 (0%) 1 (14%) 5 (71%) Pain Cancer 5 (31%) (100%) 0 (0%) 4 (80%) 0 (0%) 1 (20%) 4 (80%) Surgical 16 (100%) (69%) 1 (6%) 10 (69%) 0 (0%) 4 (25%) 12 (75%) Worry Cancer 6 (38%) (66%) 4 (66%) 1 (17%) 0 (0%) 1 (17%) 5 (83%) Surgical 8 (50%) (38%) 2 (25%) 5 (63%) 0 (0%) 1 (12%) 5 (63%) Anorexia Cancer 10 (63%) (30%) 2 (25%) 6 (60%) 1 (10%) 1 (10%) 7 (70%) Surgical 15 (94%) (40%) 5 (33%) 8 (53%) 1 (7%) 1 (10%) 12 (80%) Nausea Cancer 5 (31%) (80%) 1 (20%) 3 (60%) 1 (20%) 0 (0%) 4 (80%) Surgical 11 (69%) (18%) 2 (18%) 6 (55%) 0 (0%) 3 (27%) 8 (73%) Insomnia Cancer 7 (44%) (43%) 1 (14%) 4 (57%) 0 (0%) 2 (29%) 5 (71%) Surgical 8 (50%) (0%) 2 (25%) 4 (50%) 0 (0%) 2 (25%) 6 (80%)

6 8 JOURNAL OF CANCER PAIN & SYMPTOM PALLIATION perience would feel either the same, worse or better over the next 24 hours. The mean proportions of responses in these forward appraisal categories, averaged over the eight symptoms, are plotted in Figure 1. Overall, most children expected that the majority of their reported symptoms would feel better (55% of endorsements)orthesame(17%).therewerefewerendorsements (7%) of feel worse. ANOVA confirmed a group difference in the direction of the hypothesis (see Figure 1): symptomatic cancer patients gave significantly fewer appraisals overall in the feel better tomorrow category than did the symptomatic surgical patients, F(1,29) = p =.033. A trend for more feel worse endorsements by the cancer groupwasnotstatisticallysignificant(p=.383). Concerning specific symptoms, chi-square analysis confirmed that cancer patients were significantly less likely than surgical patients to expect improvement in levels of tiredness, χ 2 (1,4) = 9.24 p =.050, but did anticipate feeling less pain, χ 2 (1,4) = p =.001. Cancer patients were more likely than surgical patients to predict feeling the same rather than better tomorrow for sadness and worry, although these trends did not reach statistical significance (both p >.07). There were no reliable group differences for appraisals of nausea, itch and insomnia. Hypothesis 2: Cancer Patients Would Be Less Likely to Talk to an Adult About Symptoms. Table 1 lists the numbers of symptomatic children who indicated having talked to an adult for each specific symptom. The mean proportions of children who spoke to an adult (health professional or other) are plotted in Figure 2 averaged across symptom type. Overall, children reported having specifically spoken with an adult for approximately two-thirds (66%) of the symptoms they had experienced over the previous 48 hours. In the direction of the hypothesis, ANOVA confirmed that the overall mean number of talked about symptoms was greater for the surgical patients (median = 4, 73% of total reported) than the cancer patients (median = 2, 58% of total reported), F(1,29) = p =.050. In just under half of symptom reports (45%), the adults spoken with by the child did not include a medical health professional (i.e., the person was a parent or family friend, but not a doctorornurse).therewasasmalltendencyfor surgical rather than cancer patients to speak about their symptoms to an adult who was not a health professional (47% versus 42%) (see Figure 2), but ANOVA showed that this group difference was not statisticallyreliable(p =.083). There was little indication that children were more likely to talk to an adult about certain types of symptoms. While proportionally more children talked to an adult about their symptom of sadness (88%), and the least talked about symptom was itch (60%), there were no statistically significant differences or interactions with patient group. FIGURE 2. Proportion of report symptoms about which a child had spoken to adult FIGURE 1. Mean number of reported symptoms appraised as feeling worse, same, better tomorrow Mean number of reported symptoms Cancer Surgical worse same better unsure How will your symptom feel tomorrow? Proportion of symptoms Spoke to other adult Spoke to Health Professional Cancer Surgical Patient group

7 Belinda Goodenough and Tara Craft 9 Hypothesis 3: Locus of Control Would Be More Closely Tied to Help-Seeking Behavior and Symptom Appraisal in Surgical Rather Than Cancer Patients. Locus of control scores were calculated for each child and entered into a preliminary ANOVA. There were no significant differences between the patient groups with respect to average score on the scale: 15.6 (median 16.5, range 5-27) for cancer and 15.5 (median = 14.5, range 6-31) for surgical. For both patient groups, children tended to give scores toward the endpoint of the scale indexing an internal (0) rather than external (40) locus of control. Table 2 lists the correlations (Pearson) between locus of control scores and other factors of interest. The only statistically significant association was in line with the hypothesis, and reflected a group interaction on the correlation between locus of control scores and speaking to an adult about symptoms. In short, surgical patients with a relatively stronger external locus of control were likely to speak about more of their symptoms to an adult who was not a health professional (r =.52). Contrary to Hypothesis 3, cancer rather than surgical patients showed substantial and significant correlations between locus of control scores and appraisals for possible change in symptoms over the next 24 hours. In summary, cancer patients with a relatively stronger internal locus of control tended to anticipate that TABLE 2. Correlations between locus of control scores (high score = external locus) and other factors. Factor Cancer Surgical Reported symptoms (n) Expected symptoms (n) Spoke to an adult (n symptoms) Spoke to non-hp only (n symptoms) Symptoms will feel worse (n) Symptoms will feel same (n) Symptoms will feel better (n).53 (p =.034).52 (p =.038).29 (p =.321).01 (p =.993).64 (p =.014).62 (p =.017).42 (p=.139).11 (p =.553).11 (p =.695).23 (p =.385).52 (p =.022).36 (p =.176).37 (p =.155).19 (p =.477) proportionally more of their experienced symptoms would feel either worse (r = 64) or the same tomorrow (r =.62). There was a also a trend that cancer patients who anticipated proportionally more of their symptoms would feel better tomorrow, also tended to have a relatively stronger external locus of control (r =.42). Concordance Between MSAS Derived Component Scores and Global Symptom Ratings For each symptom, the mean ratings for the dimensions of duration, severity and distress (derived from the MSAS 7-12) are listed in Table 1, as well as the child s mean global rating using the Coloured Analogue Scale. The patterns of association between CAS ratings and MSAS 7-12 component scores for each of the eight symptoms was explored using Pearson correlation. The results are summarized in Table 3, indicatingwhich dimensional ratings correlated with the CAS score in the highest range (r >.65), the lowest range (r <.35), or lay in the intermediate range (as these correlations were not generated for hypothesis testing purposes, the p-values are not listed). Results showed that there was no dimension of symptom experience, as measured by the MSAS 7-12, which correlated consistently highly with the global CAS rating across all eight symptoms. Rather, different dimensions of experience were important for different symptoms. Perhaps the two standout observations concerned the symptoms of pain and tiredness. For pain, all dimensions on the MSAS 7-12 showed strong correlations with a global pain rating, whereas for tiredness, all correlations were consistently poorer (see Table 3). From a convergent validity perspective, perhaps the most robust dimension on the MSAS across symptom types was severity, which had a minimum correlation of r =.35 with the global CAS rating with every symptom. DISCUSSION This study documents self-reported experience of symptoms in an Australian sample of school-aged children hospitalized for cancer

8 10 JOURNAL OF CANCER PAIN & SYMPTOM PALLIATION TABLE 3. Strengths of correlation between global symptom ratings (colored analogue scale) and component symptom ratings of duration, severity and distress from the MSAS SYMPTOM High (r >.65) treatment or elective surgery. The multidimensional framework of the Memorial Symptom Assessment Scale for school-aged children (MSAS7-12) 1 wasusedtoinvestigatequantitative relationships between recent experience of eight specific symptoms (pain, tiredness, nausea, itch, worry, sadness, insomnia, anorexia), children s retrospective expectations for these eight symptoms, the little studied constructs of forward appraisal of possible symptom change (i.e., over the next 24 hours) and help-seeking behavior (i.e., talking to an adult about symptoms), and a psychological measure of locus of control (whether the child generally evokes external or internal agents of change). While this research represents a modest start with a small age-sex controlled single-institution sample, several observations with clinical and research value emerge in four key areas. Expectation for Symptoms Magnitude of correlation Intermediate (r =.35 to.65) Low (r < 35) Tired - Severity (.38) Distress (.28) Duration (.13) Sad Duration (.83) Severity (.55) Distress (.02) Itch Distress (.84) Duration (.39) - Severity (.35) Pain Severity (.79) - - Duration (.78) Distress (.69) Worry - Severity (.59) - Distress (.53) - Duration (.36) Anorexia - Severity (.43) Distress (.19) Duration (.41) Nausea Severity (.83) - Duration (.23) Distress (.76) Insomnia - Duration (.42) - Distress (.42) Severity (.36) A striking feature of the symptom prevalence data was its relationship to children s retrospective ratings of prior symptom expectations. Firstly, while cancer patients reported fewer symptoms overall than surgical patients (median of 4 versus 5, out of 8), it was also the case that the cancer rather than the surgical patients expected significantly more of their symptoms when they were experienced (in percentage terms 58% versus 44%). A specific example was pain: all cancer patients who reported experiencing pain also indicated that they had expected to feel pain, as compared with only 70% of the surgical patients (see Table 1). Secondly, despite the higher retrospective symptom expectation ratings given by the cancer patients, it was still the case that this inpatient sample overall indicated not expecting at least 40% of the symptoms they reported feeling. While this finding calls for rigorous follow-up investigation using prospective presymptom predictions from children (rather than the coarser retrospective ratings used in this project which are potentially contaminated by current symptom experience), it does suggest that many hospitalized children may be at risk for nasty surprises. This seems to be the case even when a child could be considered a relatively more experienced inpatient by virtue of needing treatment for a serious life-threatening illness such as cancer. The source of this finding cannot be determined by this study, but may include inadequate or unrealistic expectations on symptom-specific well-being. Given the multiplicity and combinations of symptoms reported, adequate preparation of children may need to specifically address expectations for symptom clusters, such as tiredness and nausea for cancer patients, or insomnia and pain for surgical patients (see Table 1). Symptom Appraisals Forward in Time The present data and methods suggest that, in the context of a brief age-appropriate current symptom assessment, children as young as 7 years of age can provide useful information on how they anticipate specific symptoms might feel over the next 24 hours (irrespective of whether such assessments are considered realistic). This study extends, with quantitative self-report methods, the themes identified from recent qualitative open-ended interviews with

9 Belinda Goodenough and Tara Craft 11 families of childhood cancer patients. 4 That is, children can think meaningfully about their symptoms and prefer to do so beyond requests for single global ratings. Based on the present study, this would seem to include some aspect of the future tense the vast majority of symptomatic children offered firm opinions on whether a specific symptom would feel worse, the same, or better tomorrow. There were few unsure responses(see Table 1), and these seemed to reflect genuine appraisals the child was uncertain how the symptom may feel, rather than simply not understanding the question. Across the sample, children were generally optimistic that the majority of their symptoms would not feel worse, with around half anticipating improvement rather than simply expecting to feel the same. A follow-up study could examine the basis and realistic nature of such expectations, and whether holding unsubstantiated expectations for symptom improvement undermines future adaptive coping. Notwithstanding this general optimism, however, the study did provide support for the umbrella hypothesis that cancer patients would be less likely than surgical patients to anticipate symptom improvements (see Figure 1). The main significant difference was that cancer patients, relative to surgical patients, rated proportionally fewer of their experienced symptoms as potentially feeling better tomorrow (49% versus 60% of appraisal ratings). Help-Seeking and Locus of Control Across patient groups, children indicated that they had specifically talked to an adult for only around two-thirds of the symptoms they were experiencing, and on about half of these occasions, the adult was not a medical or nursing health professional (see Figure 2). As predicted, children in the cancer rather than the surgical group talked to adults about fewer of their symptoms, although cancer patients were significantly more likely to speak with adults that included a health professional. These results may have implications for professionals confidence in parents to give reliable proxy appraisals of children s symptom status. The present data suggest that many parental symptom appraisals may not draw upon self-report from a school-aged child (either spontaneous or solicited). This study did not attempt to discriminate child- versus adult-initiated conversations about symptoms, the nature or quality of information given by the child, or whether the patient perceived or expected a symptom to be impacted upon by a child-adult exchange. Generally, there is insufficient knowledge about children s perceptions of agents of change for improving symptom wellbeing in the medical setting. Previous research has shown that chronic illness experience in adolescents (e.g., diabetes, cancer) is likely to induce an external locus of control. 5 It has also been suggested that when a child perceives medical treatment as unpredictable and beyond personal control (i.e., has an external locus), then expectations for symptom control (e.g., pain) relief may be low. 10 The present data showed some relationships between symptom outcomes and a general measure of locus of control. There was a difference between patient groups, albeit counter to the hypothesis. In short, cancer patients with a relatively stronger internal locus of control were less optimistic for improvement in symptoms, and were also more likely to talk about their symptoms to an adult who was not a health professional (see Table 2). One explanation draws upon the theme of resignation to symptom-related suffering in cancer patients identified by Woodgate and Degner. 4 For example, a child may have a relatively strong internal locus of control but may be simultaneously resigned to believing that there are no options for symptom palliation, including speaking with health professionals and so will seek to rely on personal resources for comfort or social support, such as speaking with a parent. This topic warrants further research. A Multiple Symptom Assessment in Multiple Dimensions The present data indicate that hospitalized children may experience multiple simultaneously present symptoms, whether treatment is for a life-threatening chronic illness (cancer) or a less serious acute condition (e.g., appendectomy). These data specifically extend previous qualitative work with pediatric cancer families suggesting that it is the multiplicity of symp-

10 12 JOURNAL OF CANCER PAIN & SYMPTOM PALLIATION toms which may govern overall affect or quality of life. 4 The data also confirm a previous observation that the dimensions of duration, severity, and distress may be related in different ways for different symptoms. 1,11 For example, while all patients rated tiredness with relatively high durationandseverity,thissymptomwasratedasone of the least distressing (see Table 1). By way of contrast, symptoms of nausea and pain showed stronger couplings of distress with severity or duration. The global analogue scale ratings also showed differential strengths of correlations with different MSAS component scores, varying substantially between symptoms(see Table 3). Such data highlight the usefulness of a multidimensional clinical assessment versus a singular metric(e.g., global pain or nausea scales), especially for separating self-reports of distress and severity. Elsewhere the distress dimension has been postulated as yielding the most information about the relationship between symptoms and quality of life. 12 Therefore, future research could explore whether children can give useful multidimensional assessments of anticipated symptom improvement (as a component of quality of life), e.g., would a child expect to feel the same level of distress about presence of a symptom (e.g., nausea) even if its duration or severity are expected improve? This may be an important question in paediatric oncology given that symptom persistence is a common experience and relief may be in the form of relative intensity rather than categorical symptom absence. Such precision of quantitative measurement may also be helpful for understanding themes in qualitative data which show that families of oncology patients find it difficult to determine which symptoms are the worst to bear. 4 The present study also suggests that the MSAS 7-12 may be a useful clinical tool for hospital wards which nurse both oncology and surgical patients of school-age as often may be the case for those children needing surgical tumor resection. While not designed as a crossvaliditystudyperse,theeightkeysymptomson the MSAS 7-12, selected from the cancer context, appear to have excellent face validity for the general pediatric post-operative context (e.g., pain, fatigue). There is value in reducing the different symptom assessment schemata imposed upon nursing staff. It remains to be determined whether the MSAS 7-12 retains its utility in settings such as home-based or end-of-life care. Study Limitations and Future Directions The present findings were based on a sample of modest size (n = 32). Pediatric cancer is rare, heterogenous in diagnosis and treatment, and some cancer types have a peak incidence outside the school-age sample reported here (e.g., embryonal tumors in under fives). In partial address of these issues, the methods purposively sampled only child cancer patients homogenous with respect to contemporaneous chemotherapy regimen in less complicated regimens (e.g., no transplant or relapse patients). The comparison group of general pediatric surgical inpatients were selected via meticulous deliberately matching to the cancer patients on age and sex. Notwithstanding these controls, it would be preferable to conduct studies on much larger samples, particularly as the cell sizes for some symptom-based comparisons becomes necessarily small if some symptoms (e.g., itch) are not endorsed frequently (see Table 1). However, it is noteworthy that, despite the small sample-based cell sizes, the effects in the data were of sufficient size to reach statistical significance and be generally interpretable. A larger sample would also clearly permit exploration of possible age-related effects. In this study, chronological age was a controlled not a comparison variable (i.e., matched across the two patient groups to facilitate group comparisons between cancer with surgical patients). While the age range was reasonably broad (though in keeping with the target group for the MSAS 7-12), future studies could look at specifically comparing older and younger children, especially with respect to symptom appraisals. The present study suggests several questions for future research. These include the following: On what basis do children form forward appraisals of symptoms? e.g., does a child with cancer attribute changes in symptoms to disease processes, treatment processes or to spin-offs from

11 Belinda Goodenough and Tara Craft 13 other bothersome symptoms, such as feeling sadness or worry about persistent pain. Does a forward appraisal of change in a current symptom influence subsequent ratings? e.g., If a child with cancer anticipates feeling less pain tomorrow, and the expected improvement in pain does not eventuate, does this enhance ratings of worry or fatigue. Would the knowledge that a child feels resigned to symptom-related suffering for cancer influence clinical care? e.g., does knowledge that child with cancer expects no relief for nausea impact on the way in which an attending health professional investigates or implements alternative comfort enhancements, including psychological methods. Emerging themes in the data, both qualitative and quantitative, suggest that a different perspective to assessing symptoms in children, especially in cancer, may be warranted one that views symptom reports as dynamic multidimensional experiences. 13 REFERENCES 1. Collins JJ, Devine TD, Dick GS, Johnson EA, Kilham HA, Pinkerton CR, Stevens MM, Thaler HT, Portenoy, RK. (2002). The measurement of symptoms in young children with cancer: The validation of the Memorial Symptom Assessment Scale in children aged Journal of Pain and Symptom Management, 23(1), Goodenough B, Kampel L, Champion GD, Nicholas MK, Ziegler JB, McInerney M. (1997). An investigation of the placebo effect and other factors in the report of pain severity during venipuncture in children. Pain, 72(3), von Baeyer CL, Carlson G, Webb L. (1997). Underprediction of pain in children undergoing ear piercing. Behavior Research and Therapy, 35(5), Woodgate RL, Degner LF. (2003). Expectations and beliefs about children s cancer symptoms: perspectives of children with cancer and their families. Oncology Nursing Forum. 30(3): Kellerman J, Zeltzer L, Ellenberg L, Dash J, Rigler D. (1980). Psychological effects of illness in adolescence. I. Anxiety, self-esteem and perception of control. Journal of Pediatrics, 97(1), McGrath PA, Siefert CE, Speechley KN, Booth JC, Stitt L, Gibson MC. (1996). A new analogue scale for assessing children s pain: an initial validation study. Pain, 64: Perrott DA, Goodenough B, Champion GD. (2004). Children s ratings of the intensity and unpleasantness of post-operative pain using facial expression scales. European Journal of Pain. 8, Nowicki S, Strickland BR. (1973) A Locus of Control Scale for children. Journal of Consulting and Clinical Psychology, 40 (1), Lefcourt HM. (1991). Locus of control. In JP Robinson, PR Shaver & LS Wrightsman (Eds), Measures of Personality and Social Psychological Attitudes (vol. 1). California: Academic Press. 10. McGrath PA. (1987). An assessment of children s pain: a review of behavioral, physiological and direct scaling techniques. Pain, 31, Zeltzer LK, LeBaron S, Michael RD, Reed D, Schoolfield J, Prihoda TJ Can children understand use a rating scale to quantify somatic symptoms? Assessment of nausea and vomiting as a model. Journal of Consulting and Clinical Psychology. 56(4): Portenoy RK, Thaler HT, Kornblith AB, McCarthy Lepore J, Friedlander-Klar H, Kiyasu E, Sobel K, Coyle N, Kemeny N, Norton L, Scher H. (1994). The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer, 30A(9), Woodgate RL, Degner LF, Yanofsky R. (2003). A different perspective to approaching cancer symptoms in children. Journal of Pain and Symptom Management. 26(3):