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|June 16, 2023
PubMed
Summary

The aXess program improved quality of life for X-linked hypophosphatemia (XLH) patients. This patient support program enhanced patient well-being through education and consistent follow-up.

Keywords:
XLHaXess support programchildrenhypophosphatemianursespatient support programquality of life

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Area of Science:

  • Medical Genetics
  • Rare Diseases
  • Patient Support Programs

Background:

  • X-linked hypophosphatemia (XLH) is a rare genetic disorder causing phosphate wasting and impaired bone mineralization.
  • XLH significantly impacts patients' quality of life due to its chronic and multifaceted nature.

Purpose of the Study:

  • To evaluate the effectiveness of the aXess patient support program (PSP) in improving the quality of life for XLH patients.
  • To assess patient satisfaction with the aXess program.

Main Methods:

  • A 12-month prospective study involving 59 XLH patients enrolled in the aXess program.
  • Participants received regular phone contact from a nurse for treatment coordination, adherence monitoring, and motivational interviews.
  • Pediatric Quality of Life Inventory (PQLI) was administered at baseline, 6 months, and 12 months.

Main Results:

  • Most patients reported significant improvements in all dimensions of quality of life by month 12.
  • The mean PQLI score increased from 75.6 at enrollment to 85.4 at month 12 (p<0.05).
  • Patients reported high satisfaction with the program, with mean scores of 9.8 at month 6 and 9.2 at month 12.

Conclusions:

  • The aXess program demonstrates potential to enhance quality of life for patients with chronic conditions like XLH.
  • Key program components include patient education, therapy adherence support, motivational interviewing, and frequent follow-up.
  • The program effectively integrates home environment management with overall illness care, fostering collaboration among patients, families, and caregivers.