scholarly journals The Cystic Fibrosis Impact Questionnaire (CF-IQ): Qualitative Development And Cognitive Evaluation Of A New Patient-Reported Outcome Instrument To Assess The Life Impacts Of Cystic Fibrosis

2017 ◽  
Vol 20 (9) ◽  
pp. A759
Author(s):  
KP McCarrier ◽  
M Hassan ◽  
ML Martin ◽  
E Suthoff ◽  
P Hodgkins
2021 ◽  
Author(s):  
Yaqian Feng ◽  
Wei Dai ◽  
Yaqin Wang ◽  
Jia Liao ◽  
Xing Wei ◽  
...  

Abstract BackgroundLung cancer patients without chief complaints have been increasingly identified by physical examination. This study aimed to profile and compare chief complaints with patient-reported symptoms of lung cancer patients before surgery.MethodsData was extracted from a multicenter, prospective longitudinal study (CN-PRO-Lung 1) in China from November 2017 and January 2020. A comparison between chief complaints and patient-reported symptoms was analyzed using the Chi-squared test.ResultsA total of 201 (50.8%) lung cancer patients without chief complaints were found by physical examination at admission, and 195(49.2%) patients had chief complaints. The top 5 chief complaints were coughing (38.1%), expectoration (25.5%), chest pain (13.6%), hemoptysis (10.6%), and shortness of breath (5.1%). There were significantly more patients with chief complaints of coughing (38.1% vs. 15.0 %, P <0.001) and pain (20.5% vs. 6.9%, P<0.001) than those with the same symptoms rated ≥4 via MDASI-LC. There were less patients with chief complaints of fatigue (1.8% vs. 10.9%, P<0.001), nausea (0.3% vs. 2.5%, P=0.006), and vomiting (0.3% vs. 1.8%, p=0.032) than those with the same symptoms rated ≥4 via MDASI-LC. In patients without chief complaints, the five most common moderate to severe patient-reported symptoms were disturbed sleep (19.5%), distress (13.5%), dry mouth (13%), sadness (12%), and difficulty remembering (11.1%).ConclusionsSymptoms of lung cancer patients not included in the chief complaint could be identified via a patient-reported outcome instrument, suggesting the necessity of implementing the patient-reported outcome assessment before lung cancer surgery for better patient care.


2015 ◽  
Vol 18 (4) ◽  
pp. 396-403 ◽  
Author(s):  
Han-Chung Lien ◽  
Chen-Chi Wang ◽  
Shou-Wu Lee ◽  
Jeng-Yuan Hsu ◽  
Hong-Zen Yeh ◽  
...  

2018 ◽  
Vol 39 (suppl_1) ◽  
pp. S11-S11
Author(s):  
N I Ziolkowski ◽  
L R Mundy ◽  
A Pusic ◽  
J S Fish ◽  
A Klassen

2020 ◽  
Vol 8 (6) ◽  
pp. 2050-2057.e4 ◽  
Author(s):  
Karsten Weller ◽  
Tamara Donoso ◽  
Markus Magerl ◽  
Emel Aygören-Pürsün ◽  
Petra Staubach ◽  
...  

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e033867
Author(s):  
Irushi Ratnayake ◽  
Susannah Ahern ◽  
Rasa Ruseckaite

BackgroundTo determine patient-reported outcome measures (PROMs) which may be suitable for incorporation into the Australian Cystic Fibrosis Data Registry (ACFDR) by identifying PROMs administered in adult and paediatric cystic fibrosis (CF) populations in the last decade.MethodsWe searched MEDLINE, EMBASE, Scopus, CINAHL, PsycINFO and Cochrane Library databases for studies published between January 2009 and February 2019 describing the use of PROMs to measure health-related quality of life (HRQoL) in adult and paediatric patients with CF. Validation studies, observational studies and qualitative studies were included. The search was conducted on 13 February 2019. The COnsensus-based Standards for the selection of health Measurement INstruments Risk of Bias Checklist was used to assess the methodological quality of included studies.ResultsTwenty-seven different PROMs were identified. The most commonly used PROMs were designed specifically for CF. Equal numbers of studies were conducted on adult (32%, n=31), paediatric (35%, n=34) and both (27%, n=26) populations. No PROMs were used within a clinical registry setting previously. The two most widely used PROMs, the Cystic Fibrosis Questionnaire—Revised (CFQ-R) and the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), demonstrated good psychometric properties and acceptability in English-speaking populations.DiscussionWe found that although PROMs are widely used in CF, there is a lack of reporting on the efficacy of methods and timepoints of administration. We identified the CFQ-R and CFQoL as the most suitable for incorporation in the ACFDR as they captured significant effects of CF on HRQoL and were reliable and valid in CF populations. These PROMs will be used in a further qualitative study assessing patients’ with CF and clinicians’ perspectives toward the acceptability and feasibility of incorporating a PROM in the ACFDR.PROSPERO registration numberCRD42019126931.


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