STUDY 1: DEVELOPMENT OF A PILOT
INSTRUMENT
Critical Conceptual Issues
Many children with special needs receive services
from several providers, including general pediatricians,
subspeciality pediatricians, speech and
physical therapists, nutritionists, psychologists, social
workers, and case managers. As a whole, this
population is quite varied in the number and type
of providers utilized, and the relative importance of
these providers in managing the child’s condition.
For example, some children with chronic illnesses
or disabilities may have a primary care physician
and a subspecialist, each with distinct roles; other
children in this population may have a primary
care pediatrician who handles most or all of the
specialized care; still others may have a subspecialty
pediatrician who meets all or most of their
primary care needs. Each provider has a different
but potentially overlapping set of roles and responsibilities.
10,11 Specific arrangements vary from family
to family, and may vary within a particular
family over time as the child moves through new
developmental stages or as the condition changes
in its expression. A survey that refers to only 1
provider (such as the primary care provider [PCP])
will fail to capture satisfaction with other members
of the health care team who may be equally or more
important to the child’s health status and medical
outcomes.
A second conceptual issue in assessing satisfaction
involves the multilevel nature of the health
care system.2 Satisfaction with health care for children
with special needs can be measured at the 1)
individual level, where it seeks to evaluate the
quality of the interaction between patients and
their health care providers; 2) health provider network
or plan level, where the focus is on satisfaction
with receipt of services and outcomes of care;
or 3) community level, where it attempts to measure
the effectiveness with which multiple provider
networks, public health programs, and community-
based programs share responsibility for
addressing the health needs of the entire population.
Because each level involves different issues, a
comprehensive assessment of quality of care must
address them separately; satisfaction items must be
constructed so that they clearly refer to only one
particular level of care. For our purposes, we focused
on creating a tool to assess satisfaction at the
individual level of care.
Related to the issue of assessing satisfaction separately
for each level of care is the concept of multidimensionality
of care at each level. Multidimensionality
refers to the different aspects of care such
as cost, coordination, and provider competence.
Each level of the health care system has its own set
of these dimensions across which satisfaction can
be measured. For instance, dimensions of care relevant
to the individual level for children with special
needs include such features as developmentally
appropriate care and technically competent
care, while dimensions related to the health plan
level might include such aspects as physical access
to facilities and availability of services. A comprehensive
quality assessment measure should be able
to capture differences between families in their experiences
across the multiple dimensions of care.
Furthermore, patients and their families may express
more satisfaction with some dimensions of
care than others.12 Measuring satisfaction for children
with disabilities and chronic illnesses must
include items that tap the diverse dimensions that
are particularly relevant to this population.
A final conceptual issue involves the distinction
between disease-specific and general measures of
outcomes. Given that .200 chronic conditions affect
children, a satisfaction measure that can be
used generically would be more practical than one
that is linked to specific chronic conditions.
The satisfaction scale described in this article
was designed to account for these conceptual issues
within its structure and administrative procedures.
Specifically, it was designed to: 1) account
for different members of a health care team who are
interacting with a family of a child with special
needs, 2) include items related to the multiple relevant
dimensions of care that pertain to this population,
3) distinguish among the different levels of
care, and 4) be useable with parents of children
who have any serious ongoing physical health condition,
as defined by a noncategorical, functional
approach.13
Item Development and Refinement
Our first step involved specifying relevant dimensions
of care that would provide the conceptual
foundation for survey content. In reviewing the
literature, we brought together previous work on
defining quality of care for this population14–16 with
methodologic studies on satisfaction.7,17–20 Five (5)
dimensions of care, described in Table 1, were
identified as influential in determining parental
satisfaction with the many persons w