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Background: Improved survival due to advances in neonatal care has brought issues such as postnatal growth and development more to the focus of our attention. Most studies report stunting in children born very preterm and/or small for gestational age. In this article we study the growth pattern of these children and aim to identify factors associated with postnatal catch-up growth., Methods: 1338 children born with a gestational age <32 weeks and/or a birth weight of <1500 grams were followed during a Dutch nationwide prospective study (POPS). Subgroups were classified as appropriate for gestational age and <32 weeks (AGA) or small for gestational age (<32 wks SGA and > or =32 wks SGA). Data were collected at different intervals from birth until 10 years for the 962 survivors and compared to reference values. The correlation between several factors and growth was analysed., Results: At 10 years the AGA children had attained normal height, whereas the SGA group demonstrated stunting, even after correction for target height (AGA: 0.0 SDS; SGA <32 wks: -0.29SDS and > or =32 wks: -0.13SDS). Catch-up growth was especially seen in the SGA children with a fast initial weight gain. BMI was approximately 1 SD below the population reference mean., Conclusion: At 10 years of age, children born very preterm AGA show no stunting. However, many children born SGA, especially the very preterm, show persistent stunting. Early weight gain seems an important prognostic factor in predicting childhood growth.

Health-related quality of life (HRQL) studies sometimes rely, in part, on proxy information obtained from patients' significant others (spouse or close companion) or health care providers. This review: (1) provides a quantitative analysis of the results that have been reported in recent studies assessing the level of agreement between patient and proxy HRQL ratings, and (2) addresses a number of key methodological issues surrounding the use of proxy raters in HRQL research. This review concentrates on 23 studies, published between 1991-2000, that describe patient-proxy agreement for a number of well-known multidimensional HRQL instruments. In general, moderate to high levels of patient-proxy agreement were reported. Lower levels of agreement were found predominantly in studies employing a small sample size (approximately 50 patient-proxy pairs or less). In larger studies comparing patients and their significant others, median correlations were between 0.60-0.70 for physical HRQL domains and about 0.50 for psychosocial domains. Mixed results were reported in studies comparing patients and their health care providers, but most of these studies employed a relatively small sample size. Proxy raters tended to report more HRQL problems than patients themselves, but the magnitude of observed differences was modest (median standardized differences of about 0.20). Based on the current evidence, we conclude that judgements made by significant others and health care providers about several aspects of patients' HRQL are reasonably accurate. Substantial discrepancies between patient and proxy ratings occur in a minority of cases. We recommend that future studies focus on: (a) the reliability and validity of proxy ratings according to common psychometric methods, and (b) the balance between information bias due to proxy ratings and potential selection bias due to exclusion of important patient subgroups from HRQL studies.

This study examined the hypothesis that patients' persistence in comparing themselves with others who are perceived as being worse off might induce a response shift in self-reported quality of life (QL). Specifically, we tested whether patients' ratings of how they are doing compared to others (i.e., relative evaluation) moderates the link between physical deterioration and decline in self-reported QL. Two hundred forty patients with various cancer diagnoses who were undergoing palliative chemotherapy rated their physical functioning and QL (i.e., emotional functioning and global quality of life) twice with an interval of 3 months. In addition, a significant other and a research assistant rated the physical condition of the patients. Consistent with the buffering model of response shift, patients who felt that they were better off than others appeared to be able to sustain their quality of life in the face of a worsening physical condition. In contrast, those who felt the same or worse off than others could not.

Purpose: We examined the extent of agreement in health related quality of life ratings provided by patients with metastatic prostate cancer and their spouses. This agreement is important for determining the feasibility of using spouses as potential proxy raters in quality of life studies in this patient population., Materials and Methods: The study sample consisted of 72 pairs of patients with metastatic prostate cancer in remission or progression and their spouses. Patients and spouses independently completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 and a prostate cancer specific questionnaire module. Together the 2 questionnaires assess a wide range of symptoms and functional limitations for a total of 21 quality of life outcomes., Results: For 5 of the 21 patient-proxy comparisons we noted systematic differences in the mean score with spouses rating more impairment in patients than patients indicated. Most patient-proxy correlations were 0.40 to 0.75, indicating moderate to good agreement in patient and spouse ratings. A low patient-proxy correlation of less than 0.40 was noted only for the 2 measures of sexual function., Conclusions: Our findings suggest that the spouses of men with metastatic prostate cancer evaluate with a fair degree of accuracy how patients experience physical and psychosocial functioning, symptoms and overall quality of life. However, caution should be exercised when relying on proxy raters for assessing sexual functioning and satisfaction.

The authors evaluated response, time to progression (TTP), survival, prognostic factors, and toxicity in 63 patients with a recurrent glioblastoma multiforme treated with procarbazine, lomustine, and vincristine (PCV) chemotherapy. Complete and partial response was observed in two (3%) and five patients (8%). In 16 patients (25%), stable disease was observed. Median TTP and survival were 13 and 33 weeks. Age < 40 years and Karnofsky Performance Status > or = 90 were associated with longer TTP and survival. PCV treatment was generally well tolerated.

We aimed to investigate whether biological factors related to radiosensitivity and chemosensitivity have prognostic significance in non-small-cell-lung-cancer (NSCLC) patients treated with daily low doses of cisplatin and radiotherapy. We treated 27 NSCLC patients with concomitant daily low-dose cisplatin and radiotherapy between 1993 and 1995. Tumour specimens were analyzed for p53 and bcl-2 expression, and for cell proliferation using antibodies against ki-67. In addition, apoptosis was measured by an end-labeling technique (TUNEL). Finally, cisplatin-induced DNA modification in buccal cells was assessed immunocytochemically using a specific anti-serum. Univariate and multivariate analyses were performed to assess the association between the different variables and survival. The median follow-up was 41 months, and 21 patients (78%) have died. In a univariate analysis, age, tumour stage and cisplatin-DNA-adduct staining were the only factors significantly associated with survival (p < 0.05, log-rank test). p53, bcl-2, Ki-67 and apoptosis showed no relationship with outcome. Multivariate analysis revealed that cisplatin-DNA-adduct staining remained an independent prognostic factor (hazard ratio, 0.10, 95% CI, 0.02-0.49), with shorter survival times for patients with low adduct staining., (Copyright 2000 Wiley-Liss, Inc.)

This study examined the usefulness of caregiver ratings of cancer patients' quality of life (QOL), an issue of relevance to both adequate patient care and to the possible use of proxy QOL raters in clinical studies. We compared QOL ratings of 90 cancer patients receiving inpatient chemotherapy with those provided by their significant others (most often the spouse), physicians and nurses. During patients' scheduled appointment for receiving chemotherapy on a clinical ward, all raters completed independently the Dartmouth COOP Functional Health Assessment charts/WONCA, an instrument developed by a cooperative group of primary care physicians to briefly assess a core set of seven QOL domains (physical fitness, feelings, daily and social activities, overall health, pain and quality of life) by single items with five response options. With few exceptions, mean scores of the proxy raters were equivalent or similar to those of the patients. Most patient-proxy correlations varied between 0.40 and 0.60, indicating a moderate level of agreement at the individual level. Of all comparisons made, 41% were in exact agreement and 43% agreed within one response category, leaving 17% more profound patient-proxy discrepancies. Disagreement was not dependent on the type of proxy rater, or on raters' background characteristics, but was influenced by the QOL dimension under consideration and the clinical status of the patient. Better patient-proxy agreement was observed for more concrete questions (daily activities, pain) and for patients with either a very good (ECOG 0) or poor (ECOG 3) performance status. The results indicate that both significant others and health care providers can be useful sources of information about cancer patients' QOL.

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.

Background and Purpose: Because many stroke survivors have cognitive and communication disorders, self-reported information on a patient's quality of life (QL) cannot always be obtained. Proxy ratings may be used to prevent exclusion of this highly relevant subgroup of patients from QL studies. The purpose of this study was to evaluate both the value and possible limitations of such proxy ratings., Methods: The patient sample was composed of 437 patients who had suffered a stroke 6 months earlier. QL was assessed by means of the Sickness Impact Profile (SIP). For 108 patients who were not communicative because of cognitive or linguistic deficits, proxy ratings on the SIP were provided by the patients' significant others. For 228 of the 329 communicative patients, both self-reported and proxy SIP ratings were obtained., Results: When mean SIP scores for patients with both self-reported and proxy-derived data available were compared, the proxy mean scores were generally in close agreement with those of the patients. However, systematic differences were noted for several SIP scales, with proxies rating patients as having more QL impairments than the patients themselves. Intraclass correlations were moderate to high for most SIP subscales (average intraclass correlation coefficient [ICC] = .63), the physical (ICC = .85) and psychosocial dimensions (ICC = .61), and the total SIP score (ICC = .77). The proxy SIP scores were sensitive to differences in patients' functional health, which supports the validity of these ratings. For all patients combined, more QL impairments were found for patients with supratentorial cortical or subcortical infarctions and hemorrhages than for patients with lacunar infarctions and infratentorial strokes. Although proxy respondents were more frequently needed for patients with the first two types of stroke, we found no evidence of biased results as a consequence of an unbalanced use of proxy respondents across the different types of stroke., Conclusions: These results suggest that the benefits of using proxy ratings for noncommunicative patients outweigh their limitations. The findings stress the need for inclusion of this important subgroup of patients in QL studies. Their significant others are able to provide useful information on these patients' QL.

Objectives: The use of self-report questionnaires for the assessment of health-related quality of life (HRQOL) is increasingly common in clinical research. This method of data collection may be less suitable for patient groups who suffer from cognitive impairment, however, such as patients with brain cancer. In such cases, one can consider employing the patients' significant others as proxy raters of the patients' health-related quality of life. The authors examined the response agreement between patients with brain cancer and their significant others on a health-related quality of life instrument commonly used in cancer clinical trials, the EORTC QLQ-C30, and on a brain cancer-specific questionnaire module, the QLQ-BCM., Methods: The study sample consisted of 103 pairs of patients, with either recently diagnosed or recurrent brain cancer, and their significant others (75% spouses, 22% relatives, and 3% friends). Patients and proxies independently completed the EORTC QLQ-C30 and the QLQ-BCM at three different times., Results: Approximately 60% of the patient and proxy scores were in exact agreement, with more than 90% of scores being within one response category of each other. For most HRQOL dimensions assessed, moderate to good agreement was found. Statistically significant differences in mean scores were noted for several dimensions, with proxies tending to rate the patients as having a lower quality of life than the patients themselves. With the exception of fatigue ratings, this response bias was of a limited magnitude. Less agreement and a more pronounced response bias was observed for the more impaired patients, and particularly for patients exhibiting mental confusion. This finding was confirmed by longitudinal analyses, which indicated lower levels of patient-proxy agreement at follow-up for those patients whose physical or neurologic condition had deteriorated over time., Conclusions: In general, patients and their significant others provide similar ratings of the patients' quality of life. Lower levels of agreement and more biased ratings can be expected among those patients for whom the need for proxies is most salient. It is argued, however, that discrepancies between patient-proxy ratings should not be interpreted, a priori, as evidence of the inaccuracy or biased nature of proxy-generated data. Future studies are needed to examine the relative validity and reliability of patient-versus proxy-generated health-related quality of life scores.

Purpose: To 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., Methods: The 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., Results: Comparison 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., Conclusion: For 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.

The cosmetic and functional results of breast conserving therapy were evaluated in a sample of 76 patients with early stage breast cancer, treated by wide local excision, axillary dissection and postoperative radiotherapy between 1975 and 1985. A comparison was made between patients' ratings, independent ratings by two observers (an oncology nurse and a radiation oncologist) and objective measurements. In approximately 40% of the cases, moderate to large differences in the appearance of the treated versus the untreated breast were reported by patients and clinical observers alike. When evaluated on an individual level, the observers' ratings showed relatively high inter-rater agreement (kappa = 0.64), but low levels of concordance were found between the patients' and observers' ratings (kappa < 0.10). Approximately half of the patients reported limited arm or shoulder function, generally mild in nature. Compared to the patients', the observers' ratings of arm edema were significantly lower, indicating 20% mild and 5% more severe swelling. Objective measures of cosmesis and function correlated moderately with the observers' and patients' ratings. Both cosmetic and functional results were found to be significantly related to time elapsed since treatment, with patients treated longer ago exhibiting more problems. The cosmetic and functional outcomes were not related to the patients' age. The results suggest that the patients' opinion can provide important additional information in the evaluation of cosmetic and functional results of breast conserving treatment.

The relationship between cosmetic and functional results of breast conserving therapy and psychosocial functioning was examined in a sample of 76 patients with early stage breast cancer, who received treatment between 1975 and 1985. The patients were interviewed at their homes regarding breast cosmesis, arm functioning and psychosocial health, and subsequently attended the hospital for independent assessment of cosmetic and functional outcomes by clinical observers. High levels of psychological distress, disturbance of body image, and decreased sexual functioning were noted in approximately one-quarter of the study sample. About half of the patients expressed heightened concern with disease recurrence and their future health. Psychosocial problems were only modestly associated with treatment-related cosmetic and functional outcomes, as determined by clinical ratings and objective assessments. The patients' own ratings of breast cosmesis and arm functioning exhibited somewhat higher correlations with self-reported psychosocial functioning. In particular, a significant association was noted between the patients' ratings of overall cosmesis and arm edema and their body image (r = 0.48 and r = 0.43, respectively). The association between cosmetic and functional results and self-reported psychosocial health was strongest among those patients younger in age and treated longer ago. These findings suggest that, in order to evaluate the impact of breast conserving therapy on the patients' quality of life, the patients' own assessments of cosmetic and functional outcomes should be used as a primary source of information.

An important instrument to achieve prolonged independence of elderly is the provision of meals, in particular cooked meals at home. The purpose of the present study is an evaluation from the consumers perspective of a meals-on-wheels service in Arnhem. Furthermore, the 77 meals-on-wheels consumers in this study, all making intensive use of the service, are described and compared to a representative sample of elderly. The participants appeared to be vulnerable from the perspective of health (particularly the women) and social situation. The perceived quality of both meals and service seem to be high. The taste, the quality of the meat and the first impression of the meal are important determinants of overall perceived meal quality. Responsiveness and reliability have a significant contribution to perceived service quality.