The impact of urinary stone disease and their treatment on patients’ quality of life: a qualitative study

Abstract

Urinary stone disease is a common, often recurrent disease, that can have a negative impact on patients' health-related quality of life (HRQoL), often effecting working, productive members of society. The literature lacks data from structured, qualitative research which could give unique insight into patients' HRQoL. The objective is to understand the impact of urinary stone disease and treatments on patients' HRQoL, from patients' and their relatives' perspective using qualitative and quantitative methodologies. Semi-structured interviews and a focus group were used to understand the HRQoL issues of patients with urinary stones disease, covering the American Urology Association index stone categories. Thematic analysis was performed (using qualitative data analysis software). Familial impact was assessed using the family-related outcome measure (FROM-16©). 62 patients with stone disease and interventions (mean age 51, range 19-92) participated. Data collection stopped when data saturation was achieved. Analysis revealed negative impact of stone disease and interventions on the patients' HRQoL, affecting domains of pain, physical symptoms, outlook on life, work/career, change in lifestyle/diet, social life, difficulties of daily living, travel/holiday problems, relationships and family member impact (106 themes grouped under ten broad headings). Subgroup analyses revealed similar impact in either sex, ureteric and renal stone groups. Recurrent stones were associated with work/financial concerns and treatment preferences varied accordingly. Our qualitative study presents detailed insights into the multidimensional impact of urinary calculi and their treatments on various domains of the HRQoL, confirming previous findings and adding new observations. The findings are expected to help in the development of patient-centric measures and communication tools.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members

“…The statistically significant correlation between Question 1 of the WHOQOL-BREF and the mean FROM-16 total scores, confirms our hypothesis that in ME/CFS patients, a poorer QoL impacts greatly on their family members’ QoL. Patient’s family members’ QoL is an important concept and has shown to be adversely affected in a wide range of medical specialities, from dermatology [ 9 ] to oncology [ 10 ] whereas in certain conditions such as urinary stones, there has been a negligible impact on family members [ 11 ].…”

Measuring the impact of COVID-19 on the quality of life of the survivors, partners and family members: a cross-sectional international online survey

“…In a FROM-16 study on family members of patients with urinary stone disease, family members were not impacted much by their relative’s disease, however they reported a slightly greater degree of change in the ‘emotional’ domain compared with the ‘personal and social life’ domain. 28 This indicates that family members of COVID-19 survivors suffered more than family members of patients with other severe chronic diseases.…”

Urinary Stones and Intervention Quality of Life (USIQoL): Development and Validation of a New Core Universal Patient-reported Outcome Measure for Urinary Calculi

“…The work in phases 1-3, with patient interviews involving many stakeholders, produced a working conceptual framework and an initial long draft of the questionnaire [8,21]. After pretesting, the revised draft was administered in field test 1.…”

“…A total of 62/77 invited patients (mean age 51 yr) and 30 family members participated in phases 1 and 2, generating 106 themes and 10 broad headings. These were mapped to a conceptual framework, with removal of duplications to create item sets [8,21]. A five-point rating scale (ranging from "not at all" to "a lot") was selected for the initial draft ( Fig.…”