We describe the triangulation of qualitative and quantitative research methods used to develop and test the Adolescent Resilience Model (ARM). The differences in meaning-based and function-based health-related quality of life (HRQL) are discussed, and method triangulation is presented as a means of developing models of HRQL that represent the perspectives of the adolescent and family. Qualitative methods of phenomenology, simultaneous concept analysis, focus groups and thematic analysis were used to generate the ARM. Quantitative instrumentation and structural equation model development and testing were used to evaluate the ARM. A decision-making process for combining qualitative and quantitative research, so that both approaches are equally valued and used, is also presented. Int. J. Cancer Suppl. 12:125-131, 1999.
Since the beginning of the 1990s there has been a growing interest, in the European setting, in evaluating health-related quality of life (HRQL) in clinical studies. Assessing HRQL in childhood cancer survivors, in particular, is a new field of research. Studies of survivors of leukemia and brain tumors are of special interest since these are the commonest groups of survivors of cancer in childhood. Initial reports suggest that most of the survivors of childhood cancer are in good health with a normal psychosocial status, social life and capacity to cope with activities of daily living. More discriminative evaluations identify a number of subtle problems, such as cognitive deficits in brain tumor survivors or anxiety about a recurrence (especially) in children who have had megatherapy and autologous bone marrow rescue. In this group, pain is also a lasting problem in about one-third of patients. The main problem in these studies is comparability as the study designs vary widely. Little information is available with respect to inter-observer agreement, which is important since it is known that proxy respondents will under- or over-estimate components of the HRQL of the child. The most important base for further development of HRQL research is communication between researchers, in order to exchange experience and to avoid duplication of effort. Communication is necessary also for combining interests and forces in developing a standardized methodology as well as for conducting collaborative studies using equivalent measures.
The Behavioral, Affective and Somatic Experiences Scale (BASES) represents a set of tools for assessing aspects of health-related quality of life (HRQL) in patients undergoing active, intensive therapy. Separate versions have been developed for parent, nurse and patient reports. The scales were constructed to be sensitive to change and appropriate for repeated measures in longitudinal designs. We report preliminary results with these measures from a sample of 105 children undergoing bone marrow transplantation (BMT). Adequate reliability of the instruments is documented through measures of both internal consistency and cross-informant consistency. Several analyses provide evidence of the clinical validity of the measures. Repeated-measures ANOVAs indicated reliable patterns of change over time, with trajectories that conformed to a priori predictions. Discriminative validity was demonstrated through detection of significant differences in the predicted direction between patients undergoing allogeneic and autologous BMT. Additional evidence for validity comes from the very similar symptom trajectories in parent, nurse and patient reports. Differences between the BASES and other measures of HRQL are identified and alternative uses of the instruments are discussed.
Quality-of-life assessment is being used increasingly in clinical research. This is true particularly in the case of survivors of cancer in childhood, where improving survival rates have raised concern regarding the long-term effects of medical cure. Health-status assessment and quality-of-life instruments have been developed for the most part in the English language, thus necessitating their translation and cultural adaptation for use in non-English-speaking countries. Our purpose was to develop a set of Spanish-language questionnaires for application with a population of children with cancer in a tertiary-care center in Buenos Aires, Argentina. The Health Utilities Index (HUI), a conceptual framework for assessing health status, was chosen for this study. Three distinct questionnaires, based on the HUI, were used: a self-completed one for health professionals and teachers (15Q) to report assessments of children and 2 interviewer-administered ones, for child survivors (42Q) to report assessments about their own health status and parents (45Q) to report assessments about their children's health status. The original translations and reviews were accomplished with direct oversight by members of the HUI Group, to ensure conceptual equivalence. The instruments were then tested in Buenos Aires by application to staff of the hematology-oncology service, childhood cancer patients and the parents of childhood cancer patients. Several modifications were made based on these tests. We concluded that the translation and cultural adaptation of these instruments was adequate for use with the groups tested in a pilot survey of survivors of childhood cancer in Argentina.
Measurement of pediatric cancer patients' health-related quality of life (HRQL) in phase III randomized, controlled clinical trials is being recognized increasingly as an essential component in evaluating the comprehensive health outcomes of modern anti-neoplastic treatment protocols. Use of a brief core measure of HRQL plus disease-specific symptom modules is a way to assess specific HRQL outcomes with a minimum of subject burden. Demonstrating a measure's feasibility, reliability and validity also represents children's ability to provide reliable and valid responses to HRQL questions. The Pediatric Cancer Quality of Life Inventory (PCQL) Modular Approach consists of a 15-item core measure of HRQL and 2 specific symptom modules: pain and nausea. To validate a patient-report form and a parent-report form, the PCQL was administered to 291 pediatric cancer patients and to their parents. Feasibility and range of measurement, as well as patient-parent concordance, were assessed. Internal consistency reliability was assessed via Cronbach's alpha. Validity was determined by the known-groups approach and by correlating PCQL scores with days missed from school. Patients had minimal missing data, and the range of measurement for the items was good, Patient-parent concordance was large but not perfect. For both patient and parent forms, internal consistency reliability of the PCQL core scale (0.83 and 0.86, respectively) was strong. The internal consistency reliabilities of the 2 symptom modules for both patient and parent forms were in the acceptable range for group comparisons, Regarding clinical validity, the core scale and the 2 symptom modules distinguished between patients on and off treatment for both patient and parent reports. Further, both patient and parent reports correlated with days of missed school in the past 6 and 12 months, The PCQL Modular Approach has demonstrated acceptable internal consistency reliability and clinical validity for both patient-report and parent-report forms. By implication, children are capable of providing reliable and valid responses to these HRQL questions. Int. J. Cancer Suppl. 12:71-76, 1999, (C) 1999 Wiley-Liss, Inc.
Important morbidity and impairment of life quality arises from both the primary pathology and therapeutic interventions in children with central nervous system (CNS) tumors. Standardized and systematic collection of morbidity data is a prerequisite of clinical trials in this field. The perception of the survivor is paramount in the determination of quality of life as this variable is dependent on the beholder. Comprehensive assessment of outcome following therapeutic intervention should evaluate this in parallel with other physical and psycho-social outcome parameters. A structured, simple schema for the evaluation of survivors of childhood CNS tumors is presented. It is intended to be easily applicable by clinicians within the everyday clinical setting. Information relating to pre- and post-operative states, function, health status and emotional and psychological well-being is collected at regular intervals from diagnosis. Re-integration into society and independence are evaluated. Children self-complete health-status assessments where appropriate. Evidence to support this is presented. The schema is intended to provide a basic framework for the monitoring of health status following treatment of CNS tumors in childhood. Regular assessments may identify individuals in need of more detailed investigation and further understanding of the evolution of morbidity in this cohort. Survivors' perception of the impact of documented dysfunction on their health-related quality of life will be determined. Optimization of the planning of future clinical service provision and therapies will result.
The measurement of health-related quality of life (HRQL) in adults with cancer has proceeded more quickly than has similar measurement in children, so there may be value in applying some methods used in adults to studies in children. An example is a health-transition state instrument called the Subjective Significance Questionnaire (SSQ). The SSQ asks patients to give their own estimates of the degree to which their HRQL has changed with time and, thus, provides a method for interpreting the meaningfulness of changes in scores as derived from a general questionnaire, the EORTC QLQ-C30. The development of similar health-transition instruments for children poses special challenges and requires the development of appropriate methodology. It is suggested that, with the use of cartoons and the answers of proxies, it should be feasible to assess the meaningfulness of changes in HRQL over time in young children as well as in adolescents. Int. J. Cancer Suppl. 12:132-137, 1999.
Our objectives were to compare adolescent and parent ratings of the health-related quality of life (HRQL) of adolescents treated for cancer, to compare the HRQL of adolescents who were on treatment vs. the HRQL of those who were off treatment following their diagnosis with cancer and to assess the HRQL of adolescents who were at different points of time following their diagnosis with cancer. The HRQL of 70 adolescents (aged 10 to 18 years) consecutively attending the Women's and Children's Hospital Oncology Clinic in South Australia was assessed by means of standard questionnaires. Parents completed the Child Health Questionnaire, the Functional Status II(R) Questionnaire and the Impact-on-Family Scale. Adolescents completed the self-report version of the Child Health Questionnaire. In general, there was good agreement between parent and adolescent reports. However, parents of adolescents receiving active treatment for cancer reported that their illness was having a greater impact on the adolescents' physical functioning than was reported by the adolescents. The psycho-social functioning of adolescents in single-parent families was reported also by parents to be worse than that of adolescents in 2-parent families. The physical functioning of adolescents had only a weak relationship with parental status but a significant relationship with treatment status. Despite generally good agreement between parent and adolescent reports describing the HRQL of adolescents treated for cancer, it cannot be assumed that reports from parents are always an accurate reflection of the views of the adolescents. Studies examining the influence of independent factors on adolescents' HRQL must take into account differences in reports from these 2 informants and the possibility that key independent variables have differing relationships with the various domains which comprise adolescents' HRQL.
Survivors of childhood cancer are a growing and vulnerable population. Cure rates for pediatric cancers now exceed 60% and, by the year 2000, an estimated 1 of every 1,000 young adults will be a cancer survivor. Because this population is at increased risk for late medical and neoplastic complications that impact adversely on health-related quality of life, it is important to investigate methods to promote risk reduction by motivating survivors to practice health-promoting behaviors. With this background, we initiated a prospective, randomized, controlled feasibility study in which survivors attending a long-term follow-up clinic were randomized to receive standard care or standard care plus an educational intervention. Our objectives were to determine if the intervention would improve the survivors' knowledge about their cancer treatment and risks of late effects and increase their practice of health-protective behaviors. Since July 1995, 272 of 318 families (86%) approached about the study agreed to participate. Of these, 266 are evaluable for assessment of baseline knowledge and health behaviors. Demographic features, baseline knowledge, health perceptions and health behaviors did not differ among randomized groups. Assessment of the intervention's efficacy at changing health behaviors of survivors randomized to the intervention group will be available when the 1-year follow-up evaluations are completed for the study cohort. Our preliminary experience with this pilot study supports the feasibility of educational intervention research in a specialty clinic dedicated to monitoring long-term childhood cancer survivors. Int. J. Cancer Suppl. 12:138-142, 1999.
Because there were limited measures available to assess health-related quality of life (HRQL) in children with chronic illnesses, this study was initiated to develop an empirically derived questionnaire for use in evaluating HRQL issues in children treated for cancer. Extensive interviews were conducted with 30 families of children with cancer, 10 of pre-school age, 10 of school age and 10 of adolescent age. Responses were videotaped and transcribed, then categorized to develop a pool of 56 items, which were administered to 132 children with cancer and to their parents. This report focuses on parental responses to objective items and ratings of importance of each of these items. Three primary categories, Self-Competence, Emotional Stability and Social Competence, were identified, each of which had solid internal consistency, sensitivity and reliability across 1-month intervals. The measure demonstrated the ability to discriminate between children with different types of cancer, offers an alternative to measures relying on expert judgment to assess HRQL and may lead to greater inclusion of psychological and social concerns as primary factors in determining HRQL in children participating in clinical trials.
Our purpose is to report the development and psychometric properties of a generic computer-delivered measure of health-related quality of life (HRQL) suitable for children aged 6 to 11 years, the Exeter HRQL scale (EHRQL). The theoretical model adopted is based on a definition of HRQL which assumes that HRQL is the result of discrepancies between an individual's actual self and ideal self. The EHRQL consists of 16 pictures, each of which is rated twice, first in terms of "like me" and second as "I would like to be". The difference between these scores is assumed to be indicative of HRQL. The EHRQL is delivered using a Macintosh Powerbook and takes approximately 20 min. Data are reported for 60 children with asthma (mean age = 8.93 years) and 69 healthy children (mean age = 7.49 years). In addition, children with asthma completed the Childhood Asthma Questionnaire (CAQ) and a measure of self-efficacy. For children with asthma, significant correlations were found between discrepancy scores and 3 of the 4 subscales of the CAQ. In addition, higher discrepancies were found for children with asthma compared with healthy children (p < 0.05). The EHRQL has acceptable internal reliability, and these data provide preliminary support for the theoretical assumption that HRQL reflects perceived discrepancies between an individual's actual self and ideal self. The measure also distinguished, as predicted, between children with asthma and healthy children. Methodological refinements to the EHRQL are suggested.
The observations posed in my comments on the reports presented at the International Workshop are drawn from experience in assisting families of children in treatment and meeting the needs of those children in the real world of school or work or sport as they seek participation in ‘‘normal’’ life activities either when cure is not an option or when they progress to and beyond cure. My experience with such families has been through the problem-solving framework of the Childhood Cancer Ombudsman Program (CCOP) in the United States of America. Although some of my experience may be specific to the U.S. health-care systems, I believe that most of my comments are relevant in other settings. The families and patients referred to CCOP are confronted with issues involving the choice of therapy, often complicated by issues involving insurance coverage and access to appropriate care. These problems are particularly challenging for the growing number of children from multi-cultural backgrounds or minority and socio-economically disadvantaged families. These families confront discrimination as to resources made available for their children’s education, rehabilitation and remediation. All socio-economic classes are experiencing increasing numbers of issues about access to insurance, employment and appropriate education. CCOP has had case referrals involving disturbed survivors who may be involved in illicit drugs, violence against self or family or petty criminal activity. Clues to many of the problems CCOP addresses probably have a basis in the medical history, adaptation and orientation of the family and survivor. Measurement of health-related quality of life (HRQL) may assist in identifying those clues. The developers of HRQL measures for children who have cancer or those who have survived cancers in childhood should not miss an opportunity to gather data that are essential to developing interventions that will facilitate survivors reaching the health quality, socialization, education and work skills that they need to craft their futures. Many of the reports discussed at the International Workshop present approaches that help to achieve these goals. The tools considered at the Workshop for assessing HRQL are an excellent beginning for assembling data that can be used to address, anticipate and remediate difficulties faced by survivors of childhood cancers. Investigators developing these tools, for use in clinical research, should look beyond the traditional funding sources (such as the National Cancer Institute). Perhaps funding should be sought from agencies dealing with education, maternal and child health and mental health. HRQL investigators should pay attention to the extent to which patients and survivors follow developmental milestones, including readiness to engage in normal schooling and work. It is important to construct HRQL measures relating to future expectations in education, training, jobs and activities and to apply and re-assess them over time. For example, experience at CCOP indicates that survivors of brain tumors often encounter serious problems in accommodation to school and work roles. Again, it is particularly important to track the long-term status of children who receive highly aggressive forms of therapy, such as bone marrow transplantation. Several reports presented at the International Workshop provide evidence that children can assess their own HRQL. Innovative approaches, such as computer-assisted administration, hold great promise. Other reports examine the extent to which simple tools provide information similar to that obtained from more complete and detailed assessments. For instance, Mulhern examined the correlation between the information on cognition provided by the Health Utilities Index Mark 2 system and information obtained from a battery of neuro-psychological tests. If simple tools can indeed provide useful information, this would be especially helpful to schools with limited expertise and resources for measurement. Further contributions explored the extent of agreement and disagreement among observers, particularly the degree of congruence between assessments by parents and adolescents. A lack of congruence between parent and adolescent assessments may be a signal useful for identifying patients in denial. Further work on parent–child communication is a priority. Nonetheless, the adolescent’s observations are the more important if interventions are to be patient-, and not family-, centered. The adolescent is not isolated in a treatment or medical surveillance mode. The adolescent is preparing to be a ‘‘resilient’’ survivor. That preparation requires a milieu of education, empowerment, readiness and mentoring. The absence of these components of care, a process of pointing the family/patient toward programs that will help in ‘‘getting ready for adult life’’, will short-change the patient and family and waste an opportunity available to the medical treatment team to use their time with the patient and family productively. Interventions to nurture resilience need to be examined. To date, many of these interventions have involved the use of support groups. Innovative approaches for collecting information from patients and parents who are not ‘‘group’’ people need to be explored. Additional presentations dealt with translation and cultural adaptation of HRQL instruments. These developments have the potential both to facilitate international studies and to make it possible to include minority groups in the collection of HRQL data in our increasingly multi-cultural societies. International collaborative studies offer the possibility of speeding up the process of assessing new treatments. Having appropriate tools for collecting data from diverse populations will help to ensure that legitimate concerns of specific groups are not overlooked. Researchers should consider engaging long-term survivors and their families in focus groups and other forums to reflect on the content of HRQL measures. Qualitative and quantitative approaches can be used to ensure that investigators are ‘‘asking the right questions’’. It is also important that normative data from healthy children be collected as a standard with which to compare children with cancer. Attention also needs to be focused on the functioning of families and coping skills. In sum, the International Workshop represents an important step. I challenge clinicians and those who develop HRQL measures to consider the future for the child with cancer. HRQL measures have the potential to help health-care providers to keep that future in mind and produce better outcomes for the children and their families.
Our objective was to develop a health-related quality of life measure for use in pediatric oncology. The development process followed the EORTC Quality of Life Study Group (QLSG) guidelines but utilized a parental proxy rating methodology developed within the framework of the EORTC QLSG. Data are reported on the preliminary stages of development, which include interviews in the target population, specialist review of questionnaire content and initial results on the psychometric structure of the measure. The questionnaire has been translated from English to Swedish and Dutch and is available for international field testing. Suggestions for further development of the new measure are described, including the need for parallel forms for use with children and adolescents as well as the parental proxy rating form described here.
Mutual concurrent validity of 2 generic measures of health-related quality of life (HRQL), the Child Health Questionnaire (CHQ) and the Health Utilities Index Mark 2 (HUI2) and HUI3, was assessed. Data were from 3 centers participating in a Canadian multi-center retrospective cohort study currently in progress to assess psycho-social and physical late effects in children surviving >/=5 years after cancer diagnosis between 1981 and 1990. Exploratory results are from 244 parent reports on HRQL in children <16 years old when studied. Spearman rank-order correlations between sub-scale scores for the CHQ and single-attribute utility scores for the corresponding attribute from the HUI2 and HUI3 were used. As predicted, the correlation between CHQ bodily pain and HUI2 and HUI3 pain was strong, 0.58 and 0.60, respectively, while correlations between CHQ physical functioning and HUI2 mobility and HUI3 ambulation were moderate, both 0.45. Correlations between CHQ mental health and HUI2 and HUI3 emotion were strong, 0.64 and 0.54, respectively, rather than moderate, as predicted. Both the CHQ general health scale and the general health single item were moderately correlated with the HUI2 and HUI3 global utility scores rather than weakly, as predicted (CHQ general health scale and HUI2 and HUI3 global utility were 0.43 and 0.44, respectively; CHQ general health single item and HUI2 and HUI3 global utility were 0. 38 and 0.42, respectively). The CHQ and HUI, which are based on different methodologies (summative Likert scaling and utility analysis, respectively), appear to capture similar constructs in childhood cancer survivors.
In this article, I will focus on some of the themes that emerged from the reports presented at the International Workshop and the discussion that flowed out of them. I will focus on how investigators should be clear on their purposes and the implications of different goals, alternative strategies for instrument development and the uses of parent and child ratings of health-related quality of life (HRQL).
Our objective was to adapt and validate the Health Utilities Index Mark 2 (HUI 2) and HUI 3 health status classification systems self-report questionnaire in a population of children with cancer, a group of 42 children already included in a multi-centre database designed by the Group on Brain Tumors in Children of the French Society for Pediatric Oncology. Children were recruited during a routine consultation. Most of them had completed treatment. The version of the questionnaire for French adults was adapted linguistically for children. Open-ended queries by children about the comprehensiveness of the questions and very low non-response rates showed a good acceptability of the questionnaire. The main psychometric properties of the HUI 2 and HUI 3 classification systems were assessed in 3 groups of raters (child, parent, physician): construct validity was tested against the rating of the child's health state on a Likert scale and through comparison with clinical data, and internal consistency was determined through multi-trait analysis. Weighted and unweighted kappa values were used to measure the inter-rater agreement between the child's, parent's and physician's assessment of the child's health state. The convergent validity was satisfactory, with better results when the physician's assessment was used. The most affected attributes were the expected ones (i.e., cognition, pain and emotion). Disagreement was observed between the 3 raters, more often in the same direction: taking the child's assessment as the reference, the parents tended to under-estimate the health status while physicians tended to over-estimate it.
The sensory, motor, educational and emotional/behavioral outcomes in 32 survivors of childhood brain tumors were evaluated by examination, interview, questionnaires on emotion/behavior and the Health Utilities Index Mark 2 (HUI 2). Thirty-eight percent had moderate/severe disability, and this was associated closely with special educational provision. Pre- and peri-operative factors were the commonest determinants of disability. Fifty percent had a high score on the emotion/behavior questionnaires, suggesting a high risk of an emotional or behavioral problem. The HUI 2 discriminated well between those survivors who had and those who had not had special provision made for their education but poorly between those with high and those with low scores on the emotion/behavior questionnaires. Previous studies have found self-reported health-related quality of life to be related more closely to emotional/behavioral sequelae than to disability. Possible uses and limitations of the HUI 2 in this clinical context are discussed.
End points other than tumor response, survival and treatment toxicity are gaining importance as outcome measures for cancer clinical trials, especially for malignancies with increasingly high cure rates. These alternate outcome measures include economic and health-related quality-of-life (HRQL) end points. HRQL end points supplement traditional toxicity measures by quantifying the impact of treatment across several domains, such as physical, social and emotional functioning. These end points are capable of reflecting an individual’s state of health, not merely the absence of disease, and may be better at characterizing the long-term impact of cancer and its therapy after the acute effects are gone. The question ‘‘at what cost cure?’’ now can be addressed using validated HRQL outcome measures. The majority of newly diagnosed children with cancer are treated with curative intent. While much of the secular improvement in cure rates for pediatric malignancies has been derived from more intensive therapy, the need to account for the acute effects of cancer treatment, as well as the long-term sequelae associated with more intense therapy, has increased. Regimens are being developed not only to sustain high survival rates but also to reduce the risk of complications of therapy likely to impact on HRQL, including treatment-related sequelae such as cardiotoxicity, ototoxicity, nephrotoxicity and sexual/reproductive dysfunction. HRQL assessment can provide an unambiguous method to account for the quality of survival, not just the quantity of survival. In spite of this, HRQL assessment has not been incorporated routinely into the design of new pediatric cancer clinical trials (Bradlyn et al.,1995). What factors have limited the use of HRQL assessment in pediatric cancer trials? Until recently, there have been a very limited number of HRQL measures specifically designed for children with cancer, exceptions being the Play Performance Scale (Lanskyet al.,1987), the Health Utilities Index Mark 2 (Feeny et al., 1992), the University of Florida Pediatric Oncology Quality of Life instrument (Goodwinet al., 1994) and the Paediatric Cancer Quality of Life Inventory-32 (Varniet al.,1998). Measures such as the Child Health Questionnaire and the Health Utilities Index Mark 3 have been developed for general use but have been evaluated in pediatric cancer populations (Feeny et al., 1998; Landgrafet al., 1998; Trudelet al.,1998). In contrast to common adult malignant diseases such as lung cancer, where palliation has been a high priority, pediatric trials were designed traditionally with a curative intent, contributing to reduced emphasis on the development of therapies designed to improve HRQL. Thus, there has been less interest in HRQL measures for children with cancer. Bradlyn and Pollock (1996) reported that there was a paucity of HRQL measures appropriate for use in pediatric cancer clinical trials. New measures have been introduced since but still need to be validated properly in large pediatric cancer study populations. Historically, HRQL measures have been tacked onto treatment protocols for descriptive purposes, serving as secondary trial end points and not primary outcome measures. At present, HRQL measures for children with cancer have not been (i) universally accepted, especially among clinicians; (ii) longitudinally validated in cohorts that include children enrolled at different developmental ages; and(iii) shown to detect clinically important differences in outcomes within homogeneous patient subsets defined by specific malignancy and stage or extent of disease at the time of diagnosis. Marked improvements in survival rates for many of the common hildhood cancers have been achieved over the past 2 decades (Vietti et al., 1992). While the incidence of childhood cancer has risen slightly, it is estimated that the cure rates currently exceed 70% (Bleyer, 1993). Much of the increase in survival of children with cancer can be attributed directly to the highly organized and effective nature of pediatric cancer research. Approximately 94% of all newly diagnosed children in the continental United States are seen at institutions that participate in 1 of the 2 National Cancer Institute (NCI)–sponsored multi-disease cancer cooperative groups, the Pediatric Oncology Group and the Children’s Cancer Group (Ross et al., 1996). Therefore, protocol therapy represents the standard of care for children with cancer. The development and evaluation of new childhood cancer therapeutic regimens has long been the purview of the NCI-sponsored cooperative groups. These groups provide an optimal environment in which to evaluate HRQL, given the wide spectrum of malignancies investigated, the representative nature of the study populations and the diversity of therapeutic modalities available. The cooperative groups could provide large numbers of subjects to study HRQL outcomes within specific diagnoses of malignant disease. Recognizing the importance of HRQL assessment, the American Cancer Society sponsored a workshop on quality-of-life assessment for children with cancer in 1995, and preliminary guidelines for the use of HRQL assessment were discussed (Bradlyn et al., 1996). The Pediatric Oncology Group and the Children’s Cancer Group have adopted these guidelines for inclusion of HRQL end points in research protocols (Bradlyn and Pollock, 1996; MacLean, 1996). The communications presented at this workshop address a number of important HRQL assessment issues for pediatric oncology. New instruments were described, and the performance of existing instruments was discussed. In cross-sectional studies, evaluations of HRQL measures were shown to discriminate between patient subgroups based on factors such as specific diagnosis, age at diagnosis and intensity of treatment.
Historically, the conceptual framework for measuring health outcomes in children and adolescents can be traced to the late 1970s and early 1980s (Starfield, 1974, 1987; Grave and Pless, 1976; Eisenet al.,1979; Walker and Richmond, 1985). It was not until fairly recently, however, that important psychometric evidence concerning the underlying structure of a core set of comprehensive, generic health-assessment measures became available (Feenyet al.,1992, 1995; Starfieldet al.,1993, 1995; Kurtinet al., 1994; Landgraf and Abetz, 1996, 1997, 1998; Landgraf et al., 1996, 1998). Despite these advances in instrument development, fundamental issues related to measuring and interpreting the health-related quality of life (HRQL) of children and adolescents and their families remain largely unanswered (Landgraf and Abetz, 1996). It is not surprising, then, that key issues which reflect the current state of the field emerged during the International Workshop on assessing the HRQL of children surviving cancer. My purpose is to address these broad principles briefly within the context of pediatric oncology and the reports presented at the workshop.
