Understanding health-related quality of life in Chinese infertility patients: a qualitative study

Infertility is a global issue that significantly impacts health-related quality of life (HRQoL), HRQoL has become increasingly relevant in health policies, patient-centered care, and shared clinical decision-making. Socio-contextual factors influence reproductive populations' attitudes towards childbearing, ultimately shaping their HRQoL. The objective of this study was to gain a deeper understanding of fertility issues from the perspectives of infertility patients and fertility professionals, and to develop a comprehensive conceptual framework for understanding infertility patients' HRQoL.

Participants were recruited from a national multicenter interview survey, including four reproductive centers in the east (Jinan), west (Chongqing), south (Guangzhou), and north (Shenyang) of China. This qualitative study was conducted using semi-structured face-to-face interviews with 93 participants. Furthermore, considering that fertility is a relatively private topic, the infertility patients' electronic diaries recorded on an online community (Zhihu) were used as supplementary material. A grounded theory approach was used to analyze the data.

In total, 77 infertility patients and 10 fertility professionals were included. A total of 2580 initial concepts were identified, and 71 initial categories were derived from the initial concepts. By summarizing and sorting out the initial categories, 18 sub-categories were identified, including symptoms, physical functioning, role-physical, negative emotions, and reproductive stress, etc. Four principal categories were identified: (i) physical health, (ii) mental health, (iii) social health, and (iv) subjective wellbeing. Finally, we derived a disease-specific HRQoL conceptual framework for infertility patients based on the revised Wilson and Cleary HRQoL model.

This study provides a culturally sensitive HRQoL framework for infertility patients in Eastern contexts, addressing gender-specific experiences, and establishing a foundation for tailored interventions that support patient-centered infertility care. Furthermore, these findings will support the development of a novel, disease-specific HRQoL instrument for male and female infertility patients.