Table 3 Summary of open-ended comments on financial and HRQoL aspects of the survey
Open-ended comments from the participants | |
|---|---|
Financial aspects | Endemic costs/difficulty in quantifying (three families) |
Difficulty in quantifying Endemic costs | 1. It was difficult to estimate the costs of travel including gas to get to appointments and time it takes to load and unload their child and find suitable parking |
Endemic costs | 2. It was difficult to estimate the additional cost of having their child at home even through adulthood with care-givers coming in and out of the home and the increase in utilities, toilet paper, electricity, laundry, etc. |
Difficulty in quantifying Changing over lifetime | |
Endemic costs | 3. Annual expenses seemed very arbitrary since the current situation reported only the last 12 months whereas these expenses may have been higher in other life phases of the individual with XLMTM’s |
Endemic costs | 4. The survey did not capture the need to move homes (at a financial loss) due to needing to support their child’s medical needs (hundreds of thousands of dollars) |
Financial aspects | Job loss and job retention (two families) |
|---|---|
Difficulty in quantifying Changing over lifetime | 5. The caregiver was unable to work for first 18 months of their son’s life that caused productivity loss of hundreds of thousands of dollars |
Difficulty in quantifying Changing over lifetime | 6. The caregiver was unable to work for the first 20 months of the life of their son with XLMTM |
Financial aspects | Endemic costs/difficulty in quantifying (three families) |
|---|---|
Difficulty in job retention Nursing needs | 7. The caregiver changed jobs multiple times due to the excessively flexible schedule needed to accommodate the nursing needs of the individual with XLMTM |
Nursing needs Overall financial cost | 8. The caregiver spent personal funds to provide nursing when not covered by insurance; the total expenses over 30 years were up to $1.5 million |
Nursing needs Impact on work Sleep deprivation | 9. The nursing shortage required the parents (unpaid caregivers) to take shifts staying up, and then try to function for work and/or taking care of the individual with XLMTM on the next day for 5 years |
Financial aspects | Insurance premiums (two families) |
|---|---|
Insurance premiums Overall financial costs | 10. The largest portion of out-of-pocket expenses (besides vehicle modification) was $5,000 medical deductible for copays/co-insurance for doctor visits, specialty medications not covered by insurance; the insurance deductible was quickly met each year throughout the life of the child |
Insurance premiums Self-insured employment Multiple insurance policies Changing lifetime needs | 11. The survey did not consider medical insurance premiums; primary insurance from an employee-owned self-insured company was paid from the company’s bottom line, which affected the stock value, dividends, bonuses, and salaries of the company The caregiver had a second private insurance plan for 2 years to cover costs that were not covered by the primary or state insurance plans, adding thousands of dollars in premiums |
Financial aspects | Overall financial (two families) |
|---|---|
Overall financial costs | 12. Both parents worked full-time jobs to afford everything their son with XLMTM needs “to have the best life possible. It is very expensive to care for him” |
Overall financial costs | 13. Caring for a disabled child has severely impacted their financial future |
HRQoL | Physical, social, and emotional impact not captured |
|---|---|
Physical impact Feelings of helplessness Social impact Stress/anxiety Depression Fear | 14. The caregiver reported physical impacts, including tendinitis in wrist (needing immobilization for 5 months), torn rotator cuff, herniated/bulging disk issues, high blood pressure, weight gain, and feelings of helplessness to gain control over own health issues The caregiver also reported that they had no real social ties outside of their family unit – friends gone, some family too; feelings of loneliness and isolation adding to the stress and anxiety and being in fight-or-flight every day |
Physical impact carrier of XLMTM Feelings of helplessness Nursing needs Fear | 15. The caregiver reported the impact of wear and tear on the caretaker’s body for caring, which was already compromised as being a carrier of XLMTM along with other serious conditions The caregiver reported the helpless feeling of losing the ability to care for the individual with XLMTM due to own physical problems The caregiver reported the feeling of being scared, fearing that if their child were to be placed in a group home then they would soon die due to the amount of tracheostomy and oral suctioning they require |
Sleep deprivation Stress/anxiety Fear Coping versus living with | 16. The EQ-5D-5L did not seem to capture any detail regarding health impact and quality of life of caregivers, such as lack of sleep, level of intensity of caregiving/responsibilities, emotional stress of continuously facing possibility of child’s death, and providing life-saving interventions on a daily basis The caregiver stated that their ability to cope and a strong support system did not mean that the impacts were not significant, even if their “overall health” score was relatively high |
Stress/anxiety PTSD | 17. Caring for a disabled child has left them with severe PTSD which currently impacts their daily life |
Stress/anxiety Social impact Single parent | 18. The caregiver reported concerns over the sustainability of their emotional well‑being. They have given up all church involvement and nearly all social involvement The caregiver stated that their life was consumed with caring for the son with XLMTM and this was a daunting amount of work to do as a single parent |
Feelings of helplessness Fear | 19. The caregiver was not able to lift child any longer and was unable to afford a ceiling lift |