Page 215 - Let them speak Towards a patient reported outcome measure set for

General discussion
of care is typically measured using patient reported experience measures
(PREMs) rather than PROMs.
Conversely, the set may include outcomes that meet the definition of a
PRO (e.g., hearing), but are better measured using instruments other than
PROMs (e.g., hearing test). An alternative approach to develop the core
PRO(M) set would have been to first identify all relevant outcomes for GID,
not only PROs, and subsequently determine which of these outcomes were
best measured using PROMs. However, this approach may have resulted in
the exclusion of outcomes such as hearing, leaving them unmeasured by
the core PROM set and potentially also by other instruments, resulting in
no measurement of these outcomes at all. These considerations highlight
the need for the development of a comprehensive COS and core outcome
measurement set (COMS) for GID. One that encompasses all relevant
outcomes and matches each with the most suitable instrument. Such a
CO(M)S should be used in both care and research to measure and report
outcomes that are relevant to the GID population. The core PRO(M) set will
be part of this CO(M)S. First steps are being taken toward the development
of a CO(M)S for individuals with tuberous sclerosis complex (TSC) at the
Amsterdam UMC/Emma Children’s Hospital.
Table 3. Examples of excluded outcomes.
Excluded outcomes Personal characteristics (e.g., self-acceptance,
resilience, self-image, coping, perfectionism)
Environmental factors (e.g., family situation, social
support, life events, stigmatization)
Psychiatric diagnosis (e.g., PTSD, ADHD, ASS,
psychosis)
Medical conditions (e.g., epilepsy, tumor growth,
hypotonia, heart problems, dental problems)
Impact on the environment (e.g., impact on the
family, impact on society)
Perceived quality of care (e.g., communication
with the HCP, transition care, access to mental
healthcare, information facilities)
Reason for exclusion
Does not refer to someone’s health
Refers to the environment
Requires more comprehensive psychiatric
assessment
Cannot be (best) reported by the affected
individual or their caregiver
Refers to the environment
8
Refers to care
PTSD, post-traumatic stress disorder; ADHD, attention-deficit hyperactivity disorder; ASS, autism
spectrum disorder; HCP, healthcare professional.
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