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Table 3 Summary of major changes made to the CIQ

From: Assessing the impact on caregivers caring for patients with rare pediatric lysosomal storage diseases: development of the Caregiver Impact Questionnaire

Type of change Preliminary MLD-CIQ
(25 items) Concepts present in preliminary draft
MLD-CIQ final draft (33 items) Concepts added or removed MPS II-CIQ (28 items) Concepts added or removed MPS IIIA-CIQ (30 items) Concepts added or removed
  Revision Rationale Revision Rationale Revision Rationale
Social/family life/leisure/relationships Difficulty in: relaxing; participating in social activities; leaving home; completing household tasks; seeing family and friends; making long-term plans; paying attention to other family members or causing conflict between family members Concepts added:
Effort to go out in public with patient
Descriptions of difficulty taking child out of the house, not related to social stigma Concepts added:
Difficulty due to the patient’s disruptive behavior
Effects of disruptive behavior on: (1) enjoying time with family or friends; (2) doing daily activities; (3) caring for the patient; (4) social activities;
(5) managing the patient’s behavior
Overarching concept raised by caregivers, reflecting the behavioral symptoms common in severe MPS II No new concepts added or removed  
Effort to participate in leisure activities Descriptions by caregivers of leisure activities being impacted
Effort to communicate with patient Suggestion to focus on the frequency of communication difficulties, because not all patients are unable to communicate
Emotional/psychological functioning Worried; unhappy; overwhelmed; helpless; angry; discouraged; disappointed that you cannot communicate with your child Concepts added: Easily impatient or irritable; discouraged about limited treatment options; feel stressed Frequent reports of general stress and specific stressful events Concepts added:
Frustrated that you could not communicate with the patient
Raised by caregivers as an important concept not covered by existing questions
Removed as an approved treatment is available for MPS II
Deemed not specific enough
Concepts added:
Anxious about the patient’s future; grieving about the patient’s illness; being hit, kicked, or bitten by the child
All raised by caregivers as important concepts that were not covered by existing questions
Concepts removed:
Discouraged about limited treatment options
Worried
Physical functioning Tired; physical strain; do not have enough physical strength to care for your child; feel exhausted; sleep disturbance Concepts added:
Unable to take care of own health
Reports of delayed caregiver treatment or neglect of own health due to prioritizing caregiving Concepts added: Physically exhausted   Concepts removed
Difficulty dealing with disruptive behavior
Deemed redundant (covered by other questions)
Daily activities Families giving up things they usually do; personal time reduced Concepts added:
Unable to participate in activities because of limited time
Range of activities ‘given up’ by caregivers (e.g. seeing family, exercising) No new concepts added or removed   No new concepts added or removed  
Financial/productivity Financial strain on family; days missed from work Concepts added:
Can’t participate in activities because of limited finances
Concepts removed:
Days missed from work
Focus shifted to the effect of financial strain on the caregiver rather than the whole family Concepts added:
Worry about finances
Concepts removed:
Can’t participate in activities because of limited finances
Endorsed concepts of ‘worry’ and ‘financial difficulties’ No new concepts added or removed  
  1. CIQ Caregiver Impact Questionnaire, MLD metachromatic leukodystrophy, MPS II mucopolysaccharidosis type II, MPS IIIA mucopolysaccharidosis type IIIA
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