Symone B. Detmar

How Are You Feeling? Who Wants To Know? Patients’ and Oncologists’ Preferences for Discussing Health-Related Quality-of-Life Issues

PURPOSEnThis study investigated (1) the attitudes of cancer patients toward discussing health-related quality-of-life (HRQL) issues; (2) the association between such attitudes and patients characteristics; and (3) oncologists attitudes and self-reported behavior regarding these same issues.nnnPATIENTS AND METHODSnTwo hundred seventy-three patients receiving palliative chemotherapy and ten physicians were asked to complete a series of questionnaires.nnnRESULTSnAlmost all patients wanted to discuss their physical symptoms and physical functioning and were also willing to address their emotional functioning and daily activities. However, 25% of the patients were only willing to discuss these latter two issues at the initiative of their physician. Patients varied most in their willingness to discuss their family and social life, with 20% reporting no interest in discussing these issues at all. Female patients were more reluctant to discuss various HRQL issues than male patients. Older and less well-educated patients were more likely to prefer that their physician initiate discussion of HRQL issues. All physicians considered it to be primarily their task to discuss the physical aspects of their patients health, whereas four physicians indicated that discussion of psychosocial issues was a task to be shared with other health care providers. All physicians indicated that they generally defer to their patients in initiating discussion of psychosocial issues.nnnCONCLUSIONnAlthough both patients and oncologists seem willing to discuss a wide range of HRQL issues, communication regarding psychosocial issues may be hampered by competing expectations as to who should take the lead in initiating such discussions.

Comparison of Patient and Proxy EORTC QLQ-C30 Ratings in Assessing the Quality of Life of Cancer Patients

The aim of this study was to examine whether significant others can provide useful proxy information on the health-related quality of life (QL) of cancer patients. We examined the level and pattern of agreement between patient and proxy ratings of the EORTC QLQ-C30, the reliability and validity of both types of information, and the influence of several factors on the extent of agreement. QL ratings were obtained for 307 and 224 patient-proxy pairs (at baseline and follow-up, respectively). Agreement was moderate to good (ICC = 0.42 to 0.79). Multitrait-multimethod analysis showed good convergence and discrimination of specific QL domains. Comparison of mean scores revealed a small but systematic bias between patient and proxy ratings. The maximum level of disagreement was found at intermediate levels of QL, with smaller discrepancies noted for patients with either a relatively poor or good QL. Both patient and proxy QL ratings were reliable and responsive to changes over time. Several characteristics of the patients and their significant others were found to be associated with the level of agreement, but explained less than 15% of the variance in patient-proxy differences. In conclusion, the present findings lend support to the viability of employing significant others as proxy respondents of cancer patients quality of life where this is necessary.

Value of caregiver ratings in evaluating the quality of life of patients with cancer.

PURPOSEnTo evaluate the usefulness of caregiver ratings of cancer patients quality of life (QL), we examined the following: (1) the comparability of responses to a brief standardized QL questionnaire provided by patients, physicians, and informal caregivers; and (2) the relative validity of these ratings.nnnMETHODSnThe study sample included cancer patients receiving chemotherapy, their treating physicians, and significant others involved closely in the (informal) care of the patients. During an early phase of treatment and 3 months later, patients and caregivers completed independently the COOP/WONCA charts, covering seven QL domains. At baseline, all sources of information were available for 295 of 320 participating patients (92%). Complete follow-up data were obtained for 189 patient-caregiver triads.nnnRESULTSnComparison of mean scores on the COOP/WONCA charts revealed close agreement between patient and caregiver ratings. At the individual patient level, exact or global agreement was observed in the majority of cases (73% to 91%). Corrected for chance agreement, moderate intraclass correlations (ICC) were noted (0.32 to 0.72). Patient, physician, and informal caregiver COOP/WONCA scores were all responsive to changes over time in specific QL domains, but differed in their relative performance. Relative to the patients, the physicians were more efficient in detecting changes over time in physical fitness and overall health, but less so in relation to social function and pain.nnnCONCLUSIONnFor studies among patient populations at risk of deteriorating self-report capabilities, physicians and informal caregivers can be useful as alternative or complementary sources of information on cancer patients QL.

Role of Health-Related Quality of Life in Palliative Chemotherapy Treatment Decisions

PURPOSEnTo determine the frequency with which health-related quality-of-life (HRQL) considerations lead to modification or discontinuation of palliative chemotherapy, and the association between physicians ratings of patients HRQL and such treatment decisions.nnnMETHODSnFour consecutive medical consultations of 203 patients receiving outpatient palliative chemotherapy were tape-recorded and the content was analyzed to determine the frequency of and reasons for treatment alterations. Physicians rated their patients HRQL by using the COOP/WONCA health assessment charts. Data on tumor response and treatment toxicity were obtained from the audiotapes and, when necessary, were confirmed by medical chart audits.nnnRESULTSnTreatment was modified in 54 cases (26%) and discontinued in 40 (20%). The primary reasons for modifying treatment were toxicity (n = 22), HRQL considerations (n = 18), and tumor progression (n = 14). The primary reasons for discontinuation of treatment were tumor progression (n = 23), HRQL considerations (n = 6), and toxicity (n = 3). For eight patients, a combination of tumor progression and HRQL issues resulted in discontinuation of treatment. Treatment decisions were associated significantly with physicians global ratings of patients HRQL but not with more specific HRQL domains. In the presence of tumor progression or serious toxicity, HRQL considerations played little or no role in treatment decisions. Furthermore, approximately 70% of patients without evidence of tumor progression or toxicity, but with seriously impaired HRQL, continued to receive their treatment as planned.nnnCONCLUSIONnContrary to previous findings based on physicians self-report data, HRQL considerations seem to play a relatively minor role in decisions regarding modification or discontinuation of palliative chemotherapy.

Can Patient-Reported Outcome Measures Identify Cancer Patients' Most Bothersome Issues?

PURPOSEnPatient-reported outcome (PRO) questionnaires are being investigated for their ability to aid in individual patient management. We evaluated whether PROs can identify patients most bothersome quality-of-life issues and compared approaches for interpreting PRO scores.nnnMETHODSnThis secondary data analysis included 130 patients with cancer (mean age, 57 years; 71% female) receiving outpatient palliative chemotherapy. Patients completed a PRO (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire [QLQ-C30]) at up to three consecutive visits and reported one or two of their most bothersome function and symptom issues from categories based on QLQ-C30 domains. We compared two approaches for interpreting PRO scores and identified which way better identified patients most bothersome issues: worst scores in absolute terms or worst change from the previous time point.nnnRESULTSnFor patients reporting one bothersome issue, absolute scores identified it correctly 91% of the time for both function and symptoms versus change scores accuracy of 40% for function and 26% for symptoms. For patients reporting two bothersome issues, absolute scores identified at least one correctly 98% of the time for both function and symptoms versus change scores 63% for function and 62% for symptoms. Absolute scores identified both issues correctly 42% of the time for function and 66% of the time for symptoms versus change scores performance of 23% for both function and symptoms.nnnCONCLUSIONnAbsolute scores identify patients most bothersome quality-of-life issues better than change scores. These results support the use of PROs in clinical practice and suggest that clinicians may want to focus on the worst absolute scores when examining PRO score reports.

Accuracy of self-reported family history is strongly influenced by the accuracy of self-reported personal health status of relatives

OBJECTIVEnWe investigated the accuracy of self-reported family history for diabetes, hypertension, and overweight against two reference standards: family history based on physician-assessed health status of relatives and on self-reported personal health status of relatives.nnnSTUDY DESIGN AND SETTINGnSubjects were participants from the Erasmus Rucphen Family study, an extended family study among descendants of 20 couples who lived between 1850 and 1900 in a southwest region of the Netherlands and their relatives (n=1,713). Sensitivity and specificity of self-reported family history were calculated.nnnRESULTSnSensitivity of self-reported family history was 89.2% for diabetes, 92.2% for hypertension, and 78.4% for overweight when family history based on relatives self-reported personal health status was used as reference and 70.8% for diabetes, 67.4% for hypertension, and 77.3% for overweight when physician-assessed health status of relatives was used. Sensitivity and specificity of self-reported personal health status were 76.8% and 98.8% for diabetes, 38.9% and 98.0% for hypertension, and 80.9% and 75.7% for overweight, respectively.nnnCONCLUSIONnThe accuracy of self-reported family history of diabetes and hypertension is strongly influenced by the accuracy of self-reported personal health status of relatives. Raising awareness of personal health status is crucial to ensure the utility of family history for the assessment of risk and disease prevention.

Ethnic differences and parental beliefs are important for overweight prevention and management in children: a cross-sectional study in the Netherlands

BackgroundThe prevalence of obesity and overweight is highest among ethnic minority groups in Western countries. The objective of this study is to examine the contribution of ethnicity and beliefs of parents about overweight preventive behaviours to their child’s outdoor play and snack intake, and to the parents’ intention to monitor these behaviours.MethodsA cross-sectional survey was conducted among parents of native Dutch children and children from a large minority population (Turks) at primary schools, sampled from Youth Health Care registers.ResultsNative Dutch parents observed more outdoor play and lower snack intake in their child and had stronger intentions to monitor these behaviours than parents of Turkish descent. In the multivariate analyses, the parents’ attitude and social norm were the main contributing factors to the parental intention to monitor the child’s outdoor play and snack intake. Parental perceived behavioural control contributed to the child’s outdoor play and, in parents who perceived their child to be overweight, to snacking behaviour. The associations between parents’ behavioural cognitions and overweight related preventive behaviours were not modified by ethnicity, except for perceived social norm. The relationship between social norm and intention to monitor outdoor play was stronger in Dutch parents than in Turkish parents.ConclusionsAs the overweight related preventive behaviours of both children and parents did differ between the native and ethnic minority populations of this study, it is advised that interventions pay attention to cultural aspects of the targeted population. Further research is recommended into parental behavioural cognitions regarding overweight prevention and management for different ethnicities.

Translational Research in Genomics of Alzheimer's Disease: A Review of Current Practice and Future Perspectives

Alzheimers disease (AD) is the most prevalent form of dementia and the number of cases is expected to increase exponentially worldwide. Three highly penetrant genes (AbetaPP, PSEN1, and PSEN2) explain only a small number of AD cases with a Mendelian transmission pattern. Many genes have been analyzed for association with non-Mendelian AD, but the only consistently replicated finding is APOE. At present, possibilities for prevention, early detection, and treatment of the disease are limited. Predictive and diagnostic genetic testing is available only in Mendelian forms of AD. Currently, APOE genotyping is not considered clinically useful for screening, presymptomatic testing, or clinical diagnosis of non-Mendelian AD. However, clinical management of the disease is expected to benefit from the rapid pace of discoveries in the genomics of AD. Following a recently developed framework for the continuum of translation research that is needed to move genetic discoveries to health applications, this paper reviews recent genetic discoveries as well as translational research on genomic applications in the prevention, early detection, and treatment of AD. The four phases of translation research include: 1) translation of basic genomics research into a potential health care application; 2) evaluation of the application for the development of evidence-based guidelines; 3) evaluation of the implementation and use of the application in health care practice; and 4) evaluation of the achieved population health impact. Most research on genome-based applications in AD is still in the first phase of the translational research framework, which means that further research is still needed before their implementation can be considered.

The role and impact of patient-based health status measures on clinical decision making and clinician-patient communication in routine clinical practice

There is a growing consensus about the importance of estimating clinically meaningful differences and methods of estimation. This session provides an example of an application to a newly developed measure of mucositis to help with interpretation of clinical trial data. Also discussed are important caveats about the determination of a clinically meaningful difference. CONCLUSIONS: This session provides guidance on applying what is currently known about estimating the clinically meaningful difference of PRO measures. It is concluded that no single approach is adequate by itself, and multiple methods of estimation are necessary to provide bounded estimates of the important difference. DISCLOSURES: The drug discussed in this presentation has not yet been approved for marketing. Dr. Hays is a consultant to Amgen, Inc., and Pfizer Inc.