Development and electronic validation of the revised Cystic Fibrosis Questionnaire (CFQ-R Teen/Adult)

Abstract

The e-CFQ-R version is reliable and valid and can replace the paper copy, thus simplifying the assessment of quality of life. It also provides immediate results with no errors in scoring. It is a useful new tool in CF care.

Resilience in adolescents and young adults with cystic fibrosis: A pilot feasibility study of the promoting resilience in stress management intervention

“…The CF‐specific health‐related quality of life questionnaire (CFQ‐R) is designed to measure impact of overall health, daily life, and perceived well‐being and symptoms specifically for patients with CF. The CFQ‐R measures daily functioning from the patients' perspective, and thus provides unique information to facilitate clinical interventions . It includes nine quality of life domains: physical functioning, vitality (energy/well‐being), emotional state, social perception/limitations, role limitations/school performance, body image, eating disturbances, treatment burden, and health perception.…”

“…In addition, it includes three symptom scales: weight, respiratory, and digestion. Domain and symptom scale scores range from 0 to 100, with higher scores indicating better HRQoL or lower symptom burden . We asked all patients enrolled in the study to answer to a self‐report format of the CFQ‐R.…”

Cystic fibrosis year in review 2018, part 2

“…There was excellent concordance with the previous paper version as well as strong test‐retest reliability. This easy to use and rapid assessment for health‐related QoL will help to facilitate adoption in clinical care, allowing clinicians to better understand patient‐reported outcomes effect on adherence and outcomes . Assessing caregivers' QoL is also important to understand the burden of care from CF, thus the care related QoL (Carer‐QoL) measure was examined in a cross‐sectional cohort of 195 families consisting of 189 mothers and 137 fathers.…”

“…This easy to use and rapid assessment for health-related QoL will help to facilitate adoption in clinical care, allowing clinicians to better understand patient-reported outcomes effect on adherence and outcomes. 9 Assessing caregivers' QoL is also important to understand the burden of care from CF, thus the care related QoL (Carer-QoL) measure was examined in a cross-sectional cohort of 195 families consisting of 189 mothers and 137 fathers. An increased burden was associated with increasing age of the child, being a mother and Pseudomonas aeruginosa infection, however, no differences were seen between the different diagnosis groups (clinical diagnosis vs. newborn screen).…”

The Cystic Fibrosis Patient Registry as a guarantee of effective disease management

“…Реєстр пацієнтів Європейської асоціації муко вісцидозу (РПЄАМВ) -це своєрідна база даних, яка дасть змогу виявляти особливі групи пацієнтів, що, у свою чергу, підніме результати досліджень на новий рівень. Систе матизована інформація зможе використовува тися для епідеміологічних досліджень, що сприятиме довгостроковому плануванню роз поділу витрат на медичне обслуговування, охо рону здоров'я та розвиток Пан'європейських систем підтримки [5,6,7,22,23].…”