Health-related quality of life after completion of successful treatment for childhood cancer.

BACKGROUND: Previous studies have assessed health-related quality of life (HRQOL) during several treatment stages in children with cancer, but there is limited knowledge about HRQOL shortly after completing therapy. This study determined HRQOL of children with cancer shortly after the end of successful treatment compared with normative values. PROCEDURE: Several age-specific HRQOL questionnaires were administered: the ITQOL (generic, proxy-report, 0-4 years), CHQ PF 50 (generic, proxy-report, 5-7 years), Kidscreen (generic, self-report, 8-18 years) and Disabkids (chronic generic, self-report, 8-18 years). RESULTS: Children with cancer (N = 191, mean age 9.25, SD 5.06, 47.1% female) participated. Physical well-being was affected for all ages. Compared to normative values 0- to 7-year-olds were rated significantly lower on the majority of the scales. In addition, 12- to 18-year-olds had significantly better HRQOL than the norm on social scales. Compared to chronically ill norms, 8- to 18-year-olds demonstrated no differences, except for 12- to 18-year-olds who experienced significantly more physical limitations. Additionally, we found that HRQOL of parents of 0- to 7-year-olds was poorer than the norm. CONCLUSION: HRQOL in children with cancer and their parents can be impaired compared with the norm. Therefore, HRQOL should be monitored in clinical practice to make paediatric oncologists aware of these problems. For young children, we recommend checking whether certain HRQOL problems can be explained by parental worries. For older children and adolescents, paediatric oncologists need to consider social desirability and the child's adaptive style.

Social psychological determinants of the use of performance-enhancing drugs by gym users.

The aim of this study is to identify the social psychological determinants of the use of performance-enhancing drugs by gym users who practice bodybuilding, fitness, powerlifting or combat sports. In this questionnaire-based study, 144 respondents answered questions on their actual use and intention to use such drugs and also on their background characteristics and beliefs, such as their attitudes, social influences and self-efficacy. While all social psychological determinants correlated with intention to use these drugs, the most important predictors were personal norms, beliefs about performance outcomes and the perceived behavior of others. Non-users held more restrictive norms about using performance-enhancing drugs, were less optimistic about the performance-enhancing outcomes and believed that fewer significant others used performance-enhancing drugs than users and ex-users. The results of this study indicate that users attribute advantages to performance-enhancing drugs and are inclined to overlook the risks of using them. Preventive interventions should focus on influencing personal norms and social processes.

The use of focus groups in the development of the KIDSCREEN HRQL questionnaire.

There is increasing interest in the public health sector in the health-related quality of life (HRQL) of healthy children. However, most HRQL instruments are developed for children with a chronic illness. In addition, existing questionnaires are mostly based on expert opinion about what constitutes HRQL and the opinions and views of healthy children are seldom included. In the European project KIDSCREEN, a generic questionnaire was developed for children between the ages of 8 and 18 on the basis of children's opinions about what constitutes HRQL. Focus group discussions were organised in six European countries to explore the HRQL as perceived by children. There were six groups in each country, stratified by gender and age. The age groups were 8-9 years, 12-13 years, and 16-17 years, with 4-8 children in each group. Experienced moderators guided the discussions. The full discussions were audiotaped, transcribed and content-analysed. The discussions went smoothly, with much lively debate. For the youngest group, the most important aspect of their HRQL was family functioning. For both younger and older adolescents, social functioning, including the relationship with peers, was most important. Children in all groups considered physical and cognitive functioning to be less important than social functioning. These key findings were taken into account when designing the KIDSCREEN HRQL questionnaire for healthy children and adolescents, with more emphasis being placed on drawing up valid scales for family and social functioning. In addition, items were constructed using the language and lay-out preferred by the youngsters themselves. We conclude that focus groups are a useful way of exploring children's views of HRQL, showing that an emphasis should be placed on constructing valid social and family scales.

The development and validation of a handicap questionnaire for children with a chronic illness.

INTRODUCTION: This paper describes the development and initial psychometric evaluation of the Handicap Scale for Children (HSC). This questionnaire is based on the London Handicap Scale (LHS), a valid and reliable utility instrument for measuring social participation in adults. METHODS: A multidisciplinary research group was involved in developing the HSC. The questionnaire was tested in 114 children with a chronic disease and 239 healthy children in the 8-18 age range. Relating the Health Utility Index Mark 3 (HUI3) attributes to corresponding HSC scores tested the assumption that a negative health status would lead to participation problems. RESULTS: Questionnaire development resulted in a five-dimension questionnaire: mobility, physical independence, daily activities, social integration and orientation. Each dimension included one item with a six-point response scale. A higher score indicates greater handicap. Feasibility testing with 10 children showed that none of the children experienced difficulties in filling in the questionnaire. Conceptual validity, measured by correlations between the dimensions of the HSC and HUI3, was satisfactory. As expected, moderate correlation coefficients between predefined pairs of HUI and HSC attributes were found; other correlation coefficients were low. Criterion validity was also satisfactory, as shown by large differences between the healthy and the chronically ill group and by several criteria within the chronically ill group. CONCLUSION: Based on this initial evaluation, the questionnaire seems feasible and valid for use with children in the age range 8-18 years.

Role of health-related quality of life in palliative chemotherapy treatment decisions.

PURPOSE: To 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. METHODS: Four 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. RESULTS: Treatment 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. CONCLUSION: Contrary 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.

The patient-physician relationship. Patient-physician communication during outpatient palliative treatment visits: an observational study.

CONTEXT: Improving health-related quality of life (HRQL) is an important goal of palliative treatment, but little is known about actual patient-physician communication regarding HRQL topics during palliative treatment. OBJECTIVES: To investigate the content of routine communication regarding 4 specific HRQL issues between oncologists and their patients and to identify patient-, physician-, and visit-specific factors significantly associated with discussion of such issues. DESIGN: Observational study conducted between June 1996 and January 1998. SETTING: Outpatient palliative chemotherapy clinic of a cancer hospital in the Netherlands. PARTICIPANTS: Ten oncologists and 240 of their patients (72% female; mean age, 55 years) who had incurable cancer and were receiving outpatient palliative chemotherapy. MAIN OUTCOME MEASURES: Patient and physician questionnaires and audiotape analysis of communication regarding daily activities, emotional functioning, pain, and fatigue during an outpatient consultation using the Roter Interaction Analysis System. RESULTS: Physicians devoted 64% of their conversation to medical/technical issues and 23% to HRQL issues. Patients' communication behavior was divided more equally between medical/technical issues (41%) and HRQL topics (48%). Of the independent variables investigated, patients' self-reported HRQL was the most powerful predictor of discussing HRQL issues. Nevertheless, in 20% to 54% of the consultations in which patients were experiencing serious HRQL problems, no time was devoted to discussion of those problems. In particular, these patients' emotional functioning and fatigue were unaddressed 54% and 48% of the time, respectively. Discussion of HRQL issues was not more frequent in consultations in which tumor response was evaluated. CONCLUSION: Despite increasing recognition of the importance of maintaining patients' HRQL as a goal of palliative treatment, the amount of patient-physician communication devoted to such issues remains limited and appears to make only a modest contribution, at least in an explicit sense, to the evaluation of treatment efficacy in daily clinical practice.

How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues.

PURPOSE: This 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. PATIENTS AND METHODS: Two hundred seventy-three patients receiving palliative chemotherapy and ten physicians were asked to complete a series of questionnaires. RESULTS: Almost 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. CONCLUSION: Although 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.

Evaluating the quality of life of cancer patients: assessments by patients, significant others, physicians and nurses.

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.

Quality of life assessment in daily clinical oncology practice: a feasibility study.

Quality of life (QL) assessments are increasingly being included in clinical trials, but their use in clinical practice is still uncommon. The objectives of this study were to investigate the feasibility of introducing individual QL assessments into the daily routine of an out-patient oncology clinic, and the potential impact of such assessments on doctor-patient communication. The study sample included six physicians and 18 of their patients from the out-patient clinic of the Netherlands Cancer Institute/Antoni van Leeuwenhoek Hospital in Amsterdam, The Netherlands. For each patient, three follow-up consultations were observed. The first visit was employed for the purpose of a baseline measurement. At the two subsequent visits, the patients were asked to complete the EORTC QLQ-C30, a standardised cancer-specific QL questionnaire. The patients' responses were computer-scored and transformed into a graphic summary. The summary included current scores as well as those elicited at the previous visit. Both the physicians and the patients received a copy of the summary just prior to the medical consultation. Completing, scoring and printing the QL data could be done during waiting room time. The availability of the summary did not lengthen the average consultation time. A small increase was noted in the average number of QL issues discussed per consultation. However, the most notable trend was the increased responsibility taken by the physicians in raising specific QL issues for discussion. When the QL summary was available, the physicians raised three times as many topics than was the case prior to its use (P < 0.05). All six physicians and the majority of patients believed that the QL summary facilitated communication, and expressed interest in continued use of the procedure. The introduction of individual QL assessments in routine out-patient oncology practice is feasible and appears to stimulate physicians to inquire into specific aspects of the health and well-being of their patients. However, given the methodological limitations of this pilot study, the results should be interpreted with caution.

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.

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.