When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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Appendix C: Assessing Health-Related Quality in End-of-Life Care for Children and Adolescents
Appendix C: Assessing Health-Related Quality in End-of-Life Care for Children and Adolescents
Pages 476-508
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From page 476... ...
Generic and disease-specific HRQL instruments are routinely used in certain clinical situations and are now more commonly included as part of pediatric research protocols. However, these HRQL clinical screening or research instruments have not been fully applied in end-of-life care for children and adolescents; thus, their utility and validity in this phase of care are essentially unknown.
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From page 477... ...
are terms that have often been used interchangeably, a meta-analysis suggests that health status and functional status most commonly are used to refer to the physical functioning dimensions of the broader HRQL construct, while HRQL additionally includes the psychosocial dimensions of emotional, social, and role functioning, as well as related constructs (Smith, Avis, and Assmann, 1999~. HRQL instruments must be multidimensional, consisting at the minimum of the physical, mental, and social health dimensions delineated by the World Health Organization (WHO, 1948~.
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From page 478... ...
Other definitions of pediatric HRQL focus specifically on the impact of an illness or change in health on children or adolescents (Rosenbaum, Cadman, and Kirpalani, 1990) , including any effect on their psychological status, social activity, physical symptoms, overall sense of well-being, or opportunity to have control over life choices (Bradlyn, Harris, Warner et al., 1993; Czyzewski, Mariotto, Bartholomew et al., 1994; Keith and Schalock, 1994~.
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From page 479... ...
may explain the low scores obtained by advanced cancer patients. They note that changes in HRQL need not parallel decline in physical ability and that for advanced cancer patients the frame of reference for evaluating HRQL changes and nonphysical issues emerge and become more important.
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From page 480... ...
There are no published accounts of these HRQL models being applied to dying children and adolescents. This is somewhat surprising because HRQL is highly relevant in end-of-life care for children and adolescents.
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From page 481... ...
Finally, clinical observations suggest that any mode! of HRQL for dying pediatric patients needs to reflect the fluidity of the dying process and the existence of a continual transition occurring for the patients, their family members, and their health care providers.
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From page 482... ...
A generic HRQL measurement instrument enables comparisons across pediatric populations and facilitates benchmarking with healthy populations but may not be sufficient in palliative care. In addition to the generic physical, emotional, and social functioning domains delineated by the World Health Organization, the dimensions of role functioning and disease-specific symptoms are essential to include in the comprehensive measurement of HRQL in children, including ill children.
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From page 483... ...
. These findings provide empirical support for the conceptualization that disease-specific symptoms are predictive of generic HRQL and may have implications for treatments designed to enhance HRQL in pediatric palliative care.
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From page 484... ...
Whether and how to measure spirituality in pediatrics and how oici children must be in orcler to assess their spirituality beliefs remain to be empirically cleterminecl. Adult Versus Child HRQL Domains The aforementioned HRQL domains and symptoms represent many of the dimensions that have been clelineateci in the aclult palliative care literature and most from the pediatric palliative care literature (Richarcis and Ramirez, 1997; Stewart, Teno, Patrick, and Lynn, 1999; Wolfe, Grier, Klar et al., 2000~.
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From page 485... ...
In fact, many of the instruments used with both adults and children were developed in the oncology clinical trials setting. It has been noted, however, that because the goals of palliative care are more diverse than those for treating a malignancy, the dimensions included in HRQL in this setting must be broadened beyond physical, emotional, and social well-being (cf., Richards and Ramirez, 1997~.
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From page 486... ...
enerlc 14 domains: physical, role socialemotional, role social-behavioral, role social-physical, bodily pain, general behavior, mental health, self-esteem, general health perceptions, change in health, parental impactemotional, parental impact time, family activities, family cohesion 12 domains: physical, role socialemotional, role social-behavioral, role social-physical, bodily pain, general behavior, mental health, self-esteem, general health perceptions, change in health, family activities, family cohesion 50 87 PedsQL 4.0 Generic Core Generic 4 domains: physical, emotional, social, 23 school Health Utilities Index Utility 9 domains: sensation, hearing, speech, N/A (HUI Mark 2) mobility, self-care, emotion, cognition, pain, fertility Health Utilities Index Utility 6 domains: vision, ambulation, N/A (HUI Mark 3)
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From page 487... ...
. Cognition, n, N/A , pain 219 11-17 Child self-report Starfield and Riley, ement, questionnaire 1998 al, 21 4-18 Parent proxy report Goodwin et al., 1994 questionnaire usea, 27 2-18 Child self-report Varni, Katz, Seid et t anxiety, (5-18)
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From page 488... ...
The impact of a pediatric HRQL measurement instrument on clinical decision-making can be tested under the working hypothesis that HRQL measurement must occur at the point of service for each individual patient in order to improve health care outcomes (Wetzler, 2000~. In pediatric primary care, point-of-service computer-based immunization tracking has been advocated to improve immunization rates (Adams, Conners, Mann, and Palfrey, 2000~.
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From page 489... ...
When HRQL measurement instrument scores are available at the point of service, patient and parent perceptions of the child's physical and psychosocial health can inform clinical decisions by the health care provider (Varni, Seid, Knight, Uzark, and Szer, 2002b)
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From page 490... ...
The authors report appropriate internal consistency findings and note that total scores correlated with patient-provided global HRQL ratings and another HRQL instrument, although not with observer-rated functional status. Although the information presented above is representative of investigations with adults only, there are several potentially important factors to consider in future research with children and adolescents.
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From page 491... ...
Thus, the measures selected to assess HRQL in pediatric palliative care should emphasize the child's perceptions, including the youngest children empirically possible. It is very important that the items chosen for inclusion be initially derived from the measurement properties of the child self-report scales, while the parent proxy report scales should be constructed to directly parallel the child self-report items.
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From page 492... ...
Specifically, assessment of neonates, particularly those in the intensive care setting, is an uncharted area of HRQL. Given that the child is clearly unable to serve as a respondent to typical HRQL measures, investigators and clinicians must address the systematic incorporation and applicability of symptom-based scales (e.g., pain observations)
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From page 493... ...
Instrument and Technical Issues Proxy Assessment Pediatric HRQL measurement instruments must be sensitive to cognitive development and include child self-report and parent proxy report to reflect their potentially unique perspectives. Imperfect agreement between self- and proxy report, termed cross-informant variance (Varni, Katz, Colegrove, and Dolgin, 1995)
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From page 494... ...
Thus, the imperfect agreement observed between self-report and proxy report supports the need to measure the perspectives of both the child and the parent in evaluating pediatric HRQL since these perspectives may be independently related to health care utilization, risk factors, and quality of care (Seid, Varni, Bermudez et al., 2001~. However, in pediatric palliative care there may be circumstances when the child is too ill or fatigued to complete an HRQL instrument.
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From page 495... ...
In end-of-life care, this is of particular concern, especially given the widespread prevalence of fatigue and pain. There are data to suggest that at least in terms of parent informant measures, parents of chronically ill children do not perceive typical HRQL instruments to be either burdensome or distressing (Harris et al., 1994~.
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From page 496... ...
. Adult HRQL instruments ask informants to report on an interval ranging from one day (McMaster Quality of Life Scale)
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From page 497... ...
Thus, standardized HRQL instruments have the potential to improve the lives of children facing life-threatening conditions by providing the systematic documentation of efficacy of treatment interventions designed for pain and symptom relief. In palliative care, standardized measures have the potential to increase the accountability and the quality of the care provided by allowing comparison of health care institutions or practitioners and utilizing that information to inform consumers and aid quality improvement efforts (Teno, Byock, and Field, 1999~.
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From page 498... ...
This is interesting in light of a finding with adult palliative care cancer patients (Detmar, Aaronson, Wever, Muller, and Schornagel, 2001) that psychosocial issues are the most vague in terms of who should initiate the discussion.
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From page 499... ...
A number of pediatric HRQL instruments are available in a variety of language translations; for example, the Health Utilities Index and the PedsQL are both available in Spanish and French versions. The inclusion of a broad range of eligible patients in HRQL is important for a number of reasons, including the potential generalizability-limiting effects when investigators fail to include non-English-speaking patients in a clinical trial, in addition to the ethical obligation to offer treatment broadly.
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From page 500... ...
Exceptions to this recommended approach are very likely to be made when measuring HRQL of dying children and adolescents because of the concern with patient burden and the need to give priority to those measures that can sensitively detect change in clinical conditions rather than those that yield data for population comparisons. Future research is needed to identify the utility of different assessment schedules and combinations of instruments, for example, assessing generic HRQL monthly in combination with weekly assessment of symptom-specific items.
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From page 501... ...
A NOTE ON HIDDEN MORBIDITY IN PEDIATRIC PALLIATIVE CARE Previous research in pediatric health care investigating psychosocial health as the "new hidden morbidity" demonstrated the continuing underidentification of psychosocial problems in routine pediatric practice (Costello, Edelbrock, Costello, Duican, Burns, and Brent, 1988~. It seems reasonable to expect that the underidentification of psychosocial health problems demonstrated in pediatric primary care (Costello, Edelbrock, Costello, Duican, Burns, and Brent, 1988)
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From page 502... ...
Physical and emotional care of dying children and adolescents watt be Improved, and ev~dence-based justifications for resources that could benefit dying pediatric patients and their family members will be more readily available. Our purpose in this discussion has been to facilitate the focus on HRQL of dying children by offering a definition of HRQL in dying children, proposing an HRQL conceptual mode!
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From page 503... ...
. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain.
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From page 504... ...
. Withdrawal and limitation of life support in pediatric intensive care.
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From page 505... ...
. Critical issues and needs in health-related quality of life assessment of children and adolescents with chronic health conditions.
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From page 506... ...
, Quality of Life Assessments in Clinical Trials.
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From page 507... ...
. The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module.
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From page 508... ...
. The future of health status assessment.
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