Assignment: Early Integration of Palliative Care PICOT

Patient-Reported Outcome Measures Versus Proxy-Reported Outcome Measures

Overall, this review revealed that outcome measures are used predominantly to explore parental (proxy) perspectives retrospectively concerning a past event, such as children’s symptoms, circumstances of death, or satisfaction with the care received. However, retrospective studies have been found to be less reliable than prospective ones regarding assessing outcomes. Conte et al affirm that prospective studies are needed to better evaluate the overall impact of PPC on the health care system from the perspectives of children and families. Furthermore, outcome measures in PPC seldom involve the perspectives of the children, as found in our review, in which researchers in only 5 studies addressed children’s views. Ethical concerns are widely documented, and researchers argue that participating in interviews may be burdensome for children facing life-limiting conditions. In recent decades, however, several authors have recommended the involvement of children in research, showing that if the design is adapted to the children’s cognitive and physical conditions and researchers adopt a compassionate and sensitive approach, participation in studies would be valued by children and their parents and would even improve their decision-making capacity. When children are involved in research, they are frequently associated or compared with proxy parental measures. In doing so, the discrepancy between self-report (by children) and proxy reporting (by parents) is found, as reported in other studies,^– because of the unique subjective evaluations made by children, which clearly differs from those made by their parents.

The Need for Measurement Instruments in PPC

It is hypothesized that the use of patient-reported outcome measures (PROMs) would improve the quality of care provided. Nevertheless, this link is rarely assessed. Measurement instruments can be used for several purposes. They can be intended to be used as a primary guide for the caregiving process rather than an assessment of the impact of the interventions or a monitor of patient-related health outcomes over time. Physicians often consider PROMs to be useful for the assessment and screening of patients, whereas nurses perceive those instruments as almost relevant for clinical decision-making.

Difficulty measuring outcomes lies in the fact that all the described interventions could be labeled as complex interventions, which are defined by Craig et al as requiring a large number of health care professionals, organizational levels, and outcomes and a large degree of flexibility. Whether at home or in a hospital, PPC interventions are characterized by interdisciplinary teams composed of nurses, physicians, psychologists, and social workers. Coordination of care is frequently ensured by several levels of care: primary home-care teams collaborating with specialist hospital-based teams. Interdisciplinary teams are a core element of quality care in PPC because the aim is to promote QoL not only for a child but also for the whole family, considering all the dimensions, such as physical health, psychological well-being, and social relationships.

Core Dimensions to Be Measured

In adults, a study revealed that questions relating to pain, symptoms, emotional needs, and family concerns are consistently considered to be the most useful and important components of palliative PROMs. Dimensions that matter the most for children in PPC are currently not known. According to its definition, palliative care of children consists of a family-centered approach to achieve the best QoL of the children embedded among family members. This focus should consequently be addressed through the choice of a measure that is used to evaluate the outcomes of PPC on the children and their families. This idea was pointed out by Dussel and Medin. However, patient involvement in the development of a PROM is paramount and has been documented in adults by Wiering et al but not in children. As already mentioned, health-related outcome measures are either based on formative (causal) or reflective models or a mix of the 2. For this review, we were interested in discovering which model was used for the instruments that we identified. We found that all the instruments identified in this review were based on reflective models, which indicated that the explored dimensions reflected the underlying construct, such as the quantity of pain or the degree of physical impairment.

Generic Versus Specific Disease-Oriented Instruments

Another challenge is related to the choice of specific (disease-specific, such as cancer) versus generic instruments. Generic measures may be useful in comparing outcomes across different populations and interventions, especially for cost-effectiveness studies. Disease-specific measures are used to assess the special states and concerns of diagnostic groups. Specific measures may be more sensitive for the detection and quantification of small changes that are important to clinicians or patients. A systematic review performed by Janssens et al revealed that many generic instruments are available to assess children’s health. However, the authors found that only a few PROMs were usable across all age ranges up to 18 years. Most PROMs excluded at least 1 major domain, and all of them conflated elements of functioning and well-being in the scales. Additionally, the authors found at least 5 different psychometric properties for the Child Health and Illness Profile, Healthy Pathways, the Kidscreen, and the Multidimensional Student’s Life Satisfaction Scale.

Standardized Versus Individualized Measures

Standardized measures are instruments that contain predefined domains, whereas individualized measures are instruments that encourage patients to describe which domains are important to them. The only individualized measure of QoL is called the Scheduled Evaluation of Individual Quality of Life and was developed by Hickey et al in 1996.

Standardized measures of QoL have been criticized by several authors, who argue that some psychometric properties of those measures, such as the test and retest, are not valid in a PPC context. Rather, the same authors suggest the use of individualized measures of QoL,^, which seem to better reflect the subjective perception of QoL independently of the decline in physical function. Another perspective is presented by Wolpert, who recommended combining at least 1 standardized measure with 1 individualized measure to optimally assess QoL.

New Developments in the Field

Systematic reviews on PROMs have been performed for children suffering from burns or who are visually impaired, but specific PROMs for PPC are clearly lacking.

Recently, through expert meetings and international conferences, a generic promising PROM was developed that is used to address the specific methodological and conceptual challenges emerging from the PPC context.^, This multidimensional instrument is used to explore children’s perspectives on psychical, psychological, and social aspects of care while receiving palliative care. Parental perspectives on information, confidence, and worries are equally assessed by using the same tool.

See , in which we present the African Palliative Care Association Children’s Palliative Outcome Scale (APCA c-POS). Because no reports were published yet on the use of this new instrument in relation to an intervention, we did not integrate this development in our overview.

PROMs make up an instrument that is used to measure outcomes of care provided and to provide valuable information on quality of care. Nevertheless, the impact of care should be assessed not only by using outcomes measures. Documentation of the processes and types of interventions are required. Because those in PPC intend to promote QoL, a question could concern how much PROMs contribute to the overall aim to evaluate QoL or the common ground or convergent domains assessed equivalently by using PROMs compared with QoL instruments.

Implementation of PROMs in Clinical Practice

After the validation of an outcomes measure tool in PPC, a next step would be a rigorous implementation process for which guidelines are issued.^, Dissemination and implementation science is a growing research field that is focused on the best strategies to implement evidence practice. A lack of education and training were found to be the most common reasons leading to the poor implementation of PROMs and therefore must be strengthened. Some authors point out the importance of involving health care professionals right from the start during the developmental stages of a measure tool to improve its implementation.^, Patient satisfaction toward PROMs is an important element to consider in implementation research, which was explored by Recinos et al in adults; however, similar research is lacking in children.

Strengths and Limitations

With this systematic review, we offer for the first time (to our knowledge) an in-depth description of the instruments used to assess the impact of PPC interventions.

Our assessment of the psychometric properties related to instruments was restricted to the data that were retrievable from the publications included. We had no access to the developmental process used for the instruments or the underlying concepts underpinning the construction of the scales.