This PhD research is about assessment of health-related quality of life (HRQoL), which is a topic rapidly gaining ground in the medical field. HRQoL, which is also referred to as perceived health status, well-being, or simply quality of life, not only includes mental, and social domains, but also physical domains. Patient-reported outcome measures (PROMs) are among the best known tools used for measuring HRQoL. Generic PROMs, such as SF-36 and EQ-5D, were generally applied in previous studies to assess the effects of solid organ transplantation on HRQoL. These PROMs have proven to be beneficial in measuring patients’ health statuses and outcomes associated with various health-care interventions. However, because they are generic, these PROMs do not contain health items that are specifically relevant to solid organ transplant recipients. This doctoral research provides a description of the step-wise process that was developed to generate health items for a new transplant-specific patient-centered electronic PROM: TXP. A five-step, sequential, mixed-methods design was applied: a scoping literature review, expert meetings, focus group discussions with solid organ recipients, a special judgmental task administered through an online survey, and expert meetings were held to make the final selection of health items. Ultimately, nine health items were chosen for inclusion in the TXP: fatigue, skin, worry/anxiety, self-reliance, activities, weight, sexuality, stooling, and memory/concentration. These health items reflect the most prominent issues experienced by transplant recipients and were derived using a patient-centered approach. TXP generates a single numeric score, using only nine health items, for assessing the overall HRQoL of different solid organ recipients.
|Qualification||Doctor of Philosophy|
|Place of Publication||[Groningen]|
|Publication status||Published - 2020|