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Table 4 Examples of specific impacts described by caregivers, which demonstrate important concepts and modifications of each version of the CIQ

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

Preliminary MLD-CIQ

(25 items)

MLD-CIQ final draft

(33 items and general QOL)

MPS II Hunter-CIQ (28 items)

MPS IIIA-CIQ (30 items)

Impact on social and family life

Impact on relationships, family, social life, and leisure activities

Inability to participate in social activities because child requires constant care.

Family members need to visit the caregiver’s house because the caregiver is unable to leave the house.

Feeling reluctant to go out due to caring responsibility for the child.

Social functioning

Your relationships with family members or friends

Not able to spend as much time with spouse.

Child’s behavior negatively impacts relationships between parents.

Child’s behavior puts a strain on marital/romantic relationship and limits opportunities to go out as a couple.

Did you feel isolated from other people?

Feeling of isolation due to limited social interactions.

Social interactions are limited to in-home nurses or therapists.

Feeling of being confined to home because child does not cope well with being outside.

Social functioning

Your relationships with family members or friends

Difficulty participating in family activities with the child due to their behavior; often need to cut family visits short.

Inability to leave home. Social interactions limited to phone calls.

Feeling isolated

Finding it difficult to visit family.

Feeling isolated due to being unable to go out easily with the child.

Impact on emotions

Psychological impact

Feeling helpless due to inability to cure the child.

Losing temper easily over small things due to strain of caring for the child.

Inability to understand and communicate with the child.

Emotional/psychological functioning

Did you feel sad (changed to emotionally exhausted) about the patient’s illness?

Feeling bothered, depressed, crying a lot.

Having depression as a result of seeing the child’s disease progressing.

Emotional/psychological functioning

Being hit, kicked, or bitten

Being frequently kicked, hit, pinched, bitten or slapped by the child.

Feeling that the child lashing out indicates anger or frustration towards family members.

Feeling anxious about the patient’s future

Thinking about the child dying.

Feeling anxiety and fear about the future.

Grieving about the patient’s illness

Feeling hopeless, frustrated, helpless, and emotional. Regularly recurring feeling of grief.

Physical impact

Impact on physical health

Feeling exhausted. Unable to fall asleep due to extreme exhaustion.

Difficulty in picking the child up and moving them from place to place.

Unable to physically lift the child.

Physical functioning

Did you feel tired (changed to physically exhausted) as a result of taking care of the patient?

Feeling exhausted and drained; needing to nap.

Physical functioning

Difficulty dealing with disruptive behavior

Caring for the child and dealing with disruptive behavior is considered as part of taking care of the child.

Disruptive behavior impacts emotional and physical functioning.

How often did you feel physically exhausted as a result of taking care of the patient?

Feeling worn out due to the child’s hyperactivity.

Feeling tired due to the ongoing need to care for the child and assist with activities of daily living.

Feeling physically exhausted due to emotional burden.

Impact on personal time

Impact on personal time and daily activities

Role functioning

Impact on daily activities

Not enough time to do any activities other than caring for the child.

No time to relax due to constant care requirements.

How difficult was it for you to do your daily activities at work or home because you needed to take care of the patient? (Changed to how difficult was it for you to do your daily activities at home or at work because you needed to take care of the patient?)

Inability to leave child unattended impacts the ability to do daily chores.

All aspects of daily life are impacted as a result of caring for a severely disabled child.

How difficult was it for you to do your daily activities at work or home because you needed to take care of the patient?

Inability to let the child out of sight makes it almost impossible to do daily chores.

Feeling unable to continue working.

Work is impacted by management of the child’s medical care (e.g. scheduling medical appointments)

Economic impact

Impact on finances and productivity

Financial impact

Financial impact

Inability to afford discretionary expenses, e.g. leisure travel.

Financial impact due to inability to work. Living on a single income.

Work productivity is negatively impacted.

Living paycheck to paycheck.

Significant costs associated with care and home modifications including paying for: “pull-ups”, “babysitter”, “a special stroller”, “a bike for special needs children”, “nebulizer”, “expanded bathtub”, “ramp”, “removing carpet”, “special van with wheelchair access”, “gas and hotel for doctor visits”.

How often did providing care for the patient cause you financial difficulties?

Constant financial impact from the costs of medical care and tests.

Financial difficulties due to out-of-pocket expenses and lack of insurance reimbursement for medical supplements.

Significant impacts on work productivity

Work gets interrupted to care for/attend the child.

Need to take time off from work to care for the child. Changing jobs frequently as a result.

Financial necessity for both parents to work due to costs associated with medical care.

  1. The descriptions given are based on direct quotes obtained from caregivers during the interview process
  2. CIQ Caregiver Impact Questionnaire, MLD metachromatic leukodystrophy, MPS II mucopolysaccharidosis type II, MPS IIIA mucopolysaccharidosis type IIIA, QOL quality of life