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Patient-Reported Outcomes—The Value of Observational Assessments
Thank you very much for your feedback regarding our article “Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon” and your thoughts and comments which we appreciated very much.
You are addressing a considerable debate about the value of observational assessments (e.g., by clinicians or family members). It has been argued that children and adolescents may operate within different reference systems and thus differ from adults (e.g., their parents or clinicians) in their understanding of health-related quality of life (HrQoL).
While clinicians or family members can easily identify behavioral or clinical problems, this may not be the case with internal, for example, emotional problems such as pain, sadness, or tension. Thus, observers often lack first-hand information, especially regarding their patients' social functioning. Private feelings experienced particularly by children and youth with a chronic disease and their desire to keep these experiences as a secret means that observers may be unaware of those patients' nonvisible experiences and nonexpressed feelings. Still, observer reports provide important complementary information about the patients' HrQoL, especially since clinicians have much more clinical experiences than their patients, enabling them to think about the future concerns of their patients, and how they might adapt to life with a chronic health condition within the course of treatment or just later in life. Specifically, in pediatrics, professionals' concerns about their patient's physical health and psychosocial wellbeing have been reported as important factors contributing to increased referrals by primary care providers to specialists and prescriptions of treatment, regardless of objective measures of the child's wellbeing.
Thus, we do not envisage to separate so clearly between objective and subjective perspectives but rather see both perspectives as complementary and related to achieve the overall goal of patient-centered care. Assessing wellbeing and HrQoL directly from the patient's perspective should be seen as an additional source of information to objective clinical measures. HrQoL and wellbeing are subjective perceptions, so it is necessary and interesting to include them in clinical assessments and provide the opportunity to incorporate the patients' view in treatment and decision-making directly.
From a research point of view, we appreciate the availability of measures with parallel patient and observer versions which will probably continue to raise questions about the level of agreement between patients' views and their clinicians' views. We would argue those discrepancies between patient and observer reports that could validly reflect each respondent's perspective, and they are not merely due to inaccuracy or bias.
To conclude and agree with your idea that it takes a multidisciplinary team, we would say that routine assessment of pediatric HrQoL in health care and research contexts should not only include self- and observer-reported data as complementary sources of information. They should also consider the family and social context. Besides, the possible (dis)agreement between patients and observers should lead not only to consideration of which informant is most objective or valid but also to questions about what meaning these differences might have in the patient–clinician relationship eventually lead to further assessment of these dimensions. The additional cost of conducting a more in-depth assessment of HrQoL and its determinants can be offset by understanding how to interpret self- and observer-reported data. Based on knowledge about determinants of discrepancies in HrQoL ratings, we would look forward to conducting multidisciplinary prospective studies which should address difference scores in ratings as an option for integrating self and observer reports in relation to clinical outcomes.
Received: 23 March 2021
Accepted: 06 April 2021
14 June 2021 (online)
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