Background
Understanding and assessing childhood impairment and disability remain significant public health concerns. More than 93 million (or 5.1%) children and adolescents below age 15 live with a childhood disability around the world [
1]. Children with disabilities are often diagnosed with multiple ‘primary’ health conditions, while associated impairments (‘co-morbidities’) vary greatly in both scope and severity, resulting in a need for a wide variety of additional services and supports [
2]. Children with chronic impairments often lead complex lives in terms of their health care needs, and this reality often impacts their quality of life and that of their families [
3]. In order to provide families using rehabilitation services with optimal care as well as improved living standards and life quality, it is important to describe, measure, and assess accurately the ‘complexity’ of children with impairments or special health care needs.
Defining complexity has proved to be a troublesome task by virtue of the clinician’s dependence on contextual and subjective information. In addition, due to the lack of a clear definition, “complexity” has been erroneously conflated with other constructs such as co-morbidity and severity [
4,
5]. Nonetheless, several attempts have been made to define complexity. A comprehensive description of complexity has been provided as the cumulative number of biological, psychological, social and environmental issues in a child’s life that directly (and usually negatively) impact the child’s health and care needs [
5]. This notion proposes that the simple cumulative count of child health-related issues and their impact is more salient than the severity of each individual issue. Complexity is differentiated from a variety of related concepts, including disease severity, illness severity, comorbidity, functional ability, health utility, quality of life, and others [
6].
It is argued that thinking about complexity in this way is a more useful indicator of functioning in daily life activities than severity of the condition(s), because the latter does not consider or aggregate the multiple areas of concern or the magnitude and cumulative impact of these concerns. One can have an objectively observed ‘functional limitation’ – some limited level of capacity to do something – and have good accommodations that allow people to ‘do’ things even if they ‘do’ them differently from what is considered typical. For example, a child may have a walking limitation. With modifications in their home and school environment, this child may not be limited in independent mobility or participation in daily life activities, so the impact of the body-level impairment is minor. On the other hand, another child with the same level of functional limitation may report a higher level of complexity and thus find difficulty engaging in daily life activities if environmental modifications do not accommodate their needs (or indeed if additional functional challenges are present). In this situation, the parents of the second child will almost certainly report a higher level of concern and complexity.
Although several instruments and methods have been designed to measure complexity in adult health, one tool that measures complexity in children with disabilities by using a parent proxy response is the About My Child (AMC) measure [
6]. The AMC measures child health complexity and has been proposed as a tool to understand the cumulative functional needs of children and the priorities of their families. The AMC measure was created in the context of the International Classification of Functioning, Disability and Health (ICF) framework (see Table
1), which is a classification framework used for measuring health and disability [
7].
Table 1
ICF Coding for the AMC Measurea
1. Ability to move around at home, school and community | AP-4 - Mobility | d 460 |
2. Ability to use their hands and arms to do the things they want to do | AP-4 - Mobility | d 445, d 440 |
3. Ability to perform functions such as feeding/eating | AP-5 - Self-Care | d 550, d 560 |
4. Ability to carry out toileting | AP-5 - Self-Care | d 530 |
5. Ability to dress or undress self | AP-5 - Self-Care | d 540 |
6. Ability to sleep each night | BF-1 - Mental Functions | b 134 |
7. Seeing | BF-2 - Sensory Functions | b 210 |
8. Hearing | BF-2 - Sensory Functions | b 230 |
9. Ability to understand other people | BF-1 - Mental Functions, AP-3 - Communication | b 1670, d 310, d315 |
10. Ability to tell people what they want | BF-1 - Mental functions, AP-3 - Communication | b 1671, d 330, d 315 |
11. Behavior | AP-2 - General tasks and demands | d250 |
12. Mood | BF-1 - Mental Functions | b 152 |
13. Pain | BF2 - Sensory Functions | b 280 |
14. Ability to learn new things | BF-1 - Mental Functions, AP-1 - Learning and applying knowledge | b 163, d 130-d159 |
15. Ability to remember things they know | BF-1 - Mental Functions, AP - 1 Learning and applying knowledge | b 144, d 179 |
16. Ability to get along with other children | AP-7 - Interpersonal relationships | d 7504 |
17. Ability to get along with adults | AP-7 - Interpersonal relationships | d 7203, |
18. Participation in activities at home | – | d 880 |
19. Participate in activities at school or in the community | AP-8 - Major life areas, AP-9 - Community, social and civic life | d 820, d 910 |
While the AMC was developed empirically, it has been used by students and researchers at
CanChild despite the absence of a formal measurement development process. Two versions of the AMC exist: an earlier 26-item version and a later 19-item version presented here, both available from
CanChild [
6].
While Ritzema and Lach [
8] reported on the reliability and validity of the 26-item AMC measure, showing good internal consistency (Cronbach’s alpha = 0.75 to 0.85), they also indicated the need for completing test-retest for the measure, in addition to exploring clinical utility. Factor analysis was conducted on the original 26-item AMC measure (not shown) to explore the principal component loadings. Items were optimized and redundant items were removed, producing the current 19-item AMC version (hereafter referred to as the AMC-19).
The purpose of the current report is to assess the psychometric properties and ‘performance’ of the AMC-19. Assessing the capability of the AMC-19 may validate its use in health services research and advance the use of the AMC-19 in clinical applications, such as for collaboration between clinicians and parents for functional goal setting in line with family-centred care. This paper reports the test-retest reliability, scale properties, and parent reported utility of the AMC-19, using data from the Pilot study and the Service Utilization and Outcomes (‘SUO’) study [
9].
Discussion
Psychometric properties of the AMC-19 measure
This study presents evidence that complexity as assessed by the AMC-19 is a psychometrically sound construct that can be used to initiate dialogue and set goals for children in therapy by identifying the depth of parental concerns in specific areas of daily living. The internal consistency and test-retest scores support that the AMC-19 is a reliable measure.
The high internal consistency scores indicate that the 19-items used in the AMC measure are all necessary and make a meaningful contribution to the measure. Therefore, no items were considered for removal. In a future revision of the AMC-19, items could be added to address parent feedback in regard to general school integration, dangers in environment, handling transition periods and changes in routine, and independent living as suggested by the parents. Should that be done, further psychometric work will be required.
Relationship between diagnosis and complexity
Complexity scores obtained from the AMC-19 varied both within and between diagnostic categories. While the descriptive data show there is variability among AMC-19 scores by diagnosis, this is not to suggest that one condition is more complex than another. Rather, the intention is to demonstrate that the AMC-19 discriminates levels of complexity both between and within diagnoses. Descriptively, we also found variability among the complexity scores within each diagnosis. The range of complexity scores within the diagnostic categories supports the a priori hypothesis that complexity is a unique construct that differs from child to child regardless of diagnosis. These findings support the longstanding notion of the importance of a ‘non-categorical’ approach to childhood disability [
17]. In summary, our findings are supportive of the underlying idea that complexity (concern and impact) is fundamentally different from diagnostic category and thus needs to be measured and treated as such.
Applications of parental comments: Clinical utility of the AMC-19 and implications for practice
Parents’ comments represented typical concerns of any parent raising a child, with or without a disability. The majority of comments related to areas of functioning already addressed by the AMC-19 measure with the exception of life-skills, which is currently not in the AMC-19 but was identified by parents as an area of concern. Life-skills is an important area to explore because of its emphasis on daily independent living that is not socially or functionally focused. Life-skills encompass tasks and situations that may enhance the quality of living by raising awareness in children to prevent children from entering vulnerable situations as well as increasing their confidence to handle difficult situations. On the other hand, one might argue that the need for help with ‘life skills’ reflects the impact of the ‘basic’ elements of functional challenge identified by AMC-19, and while very important, should be considered a separate aspect of the lives of young people with developmental challenges.
Many of the concerns identified in Question One were out of the parents’ control – for example, enjoying school or acceptance by peers. Nonetheless, the AMC-19 identifies and voices concerns of parents, so problem areas are prioritized and plans can be created to best mitigate parental concerns. Even if a child can do a task or behavior well, improvements in a task can be monitored based on the areas identified as important by parents. While the breadth of the AMC-19 survey was identified as a limitation, it is necessary in order to capture the most common concerns across multiple areas because specific items will only lengthen the survey, causing burden on parents. Given its broad scope, and used in a clinical setting, the AMC-19 can be helpful to open a dialogue between the therapists/physicians and parents. The administration of the AMC-19 may assist with developing rapport between the therapist and families and also systematically identify key goals of therapy from the families’ perspective. AMC-19 also assists in making parents aware that any or all of the items may be important to them, and allows for the prompt and adequate identification of goals that are important to the family. Overall, the parents’ comments indicate that the use of the AMC-19 in therapy is beneficial to the family-health practitioner relationship.
This study is the first step in assessing the importance that the AMC-19 can have within a clinical setting, and parental perception of the content of the survey was a simple form of face validity. The parents’ comments support that the AMC-19 explores how well the child functions regardless of diagnosis and severity. Parental responses indicate that the AMC-19 measure would have utility in clinical therapy settings by exploring individual functional limitations in the home, school, and community. We suggest therapists provide the AMC-19 measure to parents at the start of therapy or when functional goals are difficult to identify.
Limitations
The main limitation of both studies is that data were collected from one CTC for the SUO study and three CTCs for the AMC-19 Pilot study, so the range of impairments may have been constrained in some way. We did not sample for a specific number of children with each diagnosis, so the results of the complexities scores are a reflection of the families/parents that responded and were willing to participate in the studies. For example, families from the SUO study reflect a sample with high income and young children. However, respondents with a higher socioeconomic status tend to respond more often to voluntary surveys [
18], and children of younger age groups show higher proportions of utilization at CTCs [
19‐
22]. To mitigate issues of representativeness, only descriptive statistics and median rankings were appropriate to analyze on the primary diagnoses and AMC-19 scores, and while we believe the study has internal validity, we caution that no generalizable conclusions about the population have been or should be drawn. Nor do we make implications to infer that specific diagnoses equate to higher or lower complexity levels. In this measurement development study, our goal is not to generalize or draw inferences about the clinical diagnostic population but rather to explore the properties of the AMC-19 as a tool for use between health professionals and families. Nonetheless, the most common disabilities typically seen in CTCs have been captured, which demonstrates the AMC-19 is applicable and appropriate in several settings and populations.
A possible limitation of the AMC-19 Pilot study was a low initial participation rate. This study was not intended to be a rigorous experimental design requiring a large or predetermined sample size, so convenience and respect for the families’ time were the priorities when we selected the sampling strategy. Rather, in this paper, we make a case that complexity is a fundamentally different notion than diagnostic category. Further studies are required to assess the adaptability and utility of the AMC-19 measure in other settings and populations by using a larger sample size.
Future research directions
Our next step is to assess the validity and clinical utility of the AMC-19 through a larger study by piloting its administration at a CTC. Further research is needed in a population with representation of children with varied diagnoses, chronic impairments or special health care needs. A larger study will evaluate the relationship between parent health and child’s complexity for adequate exploration of a wide variety of children with different conditions and ages, as well as a host of other dependent variables like parental stress as a correlate of the AMC-19 scores. These relationships have implications for understanding family demographics, parents’ well-being, and organizing service allocation.
Currently, we propose using the AMC-19 primarily as a descriptive account of individual children’s complexity. If the AMC-19 is to be used as a comparative instrument, or as a screening or assessment tool, a larger study will inform creating cut-off scores to establish meaningful ‘levels’ of complexity. What is also not yet known is how much real change in AMC-19 scores might be observed over time as children’s development, and their issues, change. Because our samples did not consist of a minimal number of children within specified demographic or other factors, we were unable to determine the amount of invariance in the AMC-19. A more sophisticated research design is required to assess non-invariance in the AMC-19 to provide an adequate conclusion. The implementation of the AMC-19 at a CTC will assess the measure’s utility for identifying priority areas for therapy within a clinical setting. Discussions will make it possible to assess how families and service providers will be involved to inform changes as well as future use of the AMC-19 measure in practice.
Conclusion
Complexity refers to the aggregation of concerns about children’s health, and the impact of those concerns. The AMC-19 is an instrument designed to identify the complexity in a child’s life to due biological, psychological, social, and environmental issues. The measure is short, easy-to-use, acceptable to families, and has good psychometric properties to explore areas of functional concerns and the impact of different areas on the child from the parental perspective. We believe that AMC provides a structured opportunity for parents to report their perceptions and concerns about their child, and as such offers a view that may be complementary to the way that other observers (e.g., clinicians) assess and evaluate a child’s situation. This family-centred instrument can be used for initiating dialogue between therapists and families, systematically setting goals, and evaluating the impact of supports of children and families in need of additional services.
Acknowledgements
The study team is extremely grateful to the families who participated in the studies as well as all the staff from the children’s treatment centres. We are thankful to Dr. Olaf Kraus de Camargo for his involvement in development of the AMC with the ICF coding. At the time the study was conducted, CanChild was partially supported by the Research Branch of the Ministry of Health and Long Term Care. We are thankful to Dr. Jan Willem Gorter for his work and support. Dr. Gorter holds the Scotiabank Chair in Child Health Research.