Longitudinal assessment of exercise capacity and quality of life outcome measures in cystic fibrosis: A year‐long prospective pilot study

Purpose: Physical activity is well known to improve or maintain exercise capacity and overall health in patients with cystic fibrosis (CF). However, many patients do not meet recommended guidelines for physical activity. The purpose of this study was to determine if individualized, targeted coaching could improve the levels of physical activity and quality of life in children and adolescents with CF. Subjects: Twelve children with CF, ages 7 to 17, participated in this study.Method: Each participant completed a physical activity questionnaire (PAQ) and a disease-specific quality of life questionnaire (CFQ) at baseline and three months later. The participants were given pedometers and a 10,000 step per day target. Participants also participated in discussions regarding ways to increase physical activity appropriate for their interest, abilities and age. Weekly follow-up phone calls were made to obtain pedometer counts and discuss physical activities performed. Results: Physical activity scores (PAQ) improved in 6 of 12 participants. Quality of life improved in many dimensions of the CFQ, particularly in vitality (3 of 5 improved); emotional (8 of 12 improved) and respiratory (7 of 12 improved). Conclusions: The results of this small pilot study suggest that an individualized coaching approach to physical activity in children and adolescents with CF may improve physical activity levels and improve important aspects of quality of life in some children with CF.

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P381 Efficacy of a portable oxygen concentrator in the promotion of physical activity and the quality of life in a group of patients with cystic fibrosis: pilot study

Journal of Cystic Fibrosis ◽

10.1016/s1569-1993(19)30673-3 ◽

2019 ◽

Vol 18 ◽

pp. S165

Author(s):

L. Graziano ◽

D. Asciutti ◽

D. Savi ◽

M. Rivolta ◽

I. Turinese ◽

...

Keyword(s):

Quality Of Life ◽

Physical Activity ◽

Cystic Fibrosis ◽

Pilot Study ◽

Promotion Of Physical Activity ◽

Oxygen Concentrator ◽

Portable Oxygen

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Development and Validation of a Questionnaire Evaluating the Impact of Prosthetic Dental Treatments on Patients’ Oral Health Quality of Life: A Prospective Pilot Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17145037 ◽

2020 ◽

Vol 17 (14) ◽

pp. 5037 ◽

Cited By ~ 1

Author(s):

Eitan Mijiritsky ◽

Yael Lerman ◽

Ori Mijiritsky ◽

Asaf Shely ◽

Joseph Meyerson ◽

...

Keyword(s):

Quality Of Life ◽

Oral Health ◽

Pilot Study ◽

Post Treatment ◽

Self Report ◽

Measurement Tool ◽

The Novel ◽

Prospective Pilot Study ◽

The Impact

Objectives: the aims of this study were the development of a novel questionnaire to assess the impact of prosthetic treatments on oral health-related quality of life (OHRQoL) and the performance of a prospective pilot study. Background: the currently preferred OHRQoL measurement tool is the oral health impact profile-49 (OHIP-49), a self-report questionnaire which mainly focuses on general effects related to oral health. Materials and methods: A total of 24 adult participants (9 females and 15 males) were recruited and asked to complete the novel questionnaire twice: once before the prosthetic treatment began and 4–6 weeks post-treatment. The assessment of the change in OHRQoL was based on the differences in participants’ answers before and after treatment. Data were analyzed using ANOVA with a repeated-measures method and t-tests. The reliability of the questionnaire was tested using Cronbach’s alpha and intraclass coefficient (ICC). Results: The questionnaire was found to be reliable (α ≥ 0.6), with “social disability” having the highest score (α = 0.868). All domains showed an improvement (α < 0.005) in OHRQoL scores after treatment. Conclusions: the novel questionnaire tested in this study was found to be reliable and convenient to use, and demonstrated that prosthetic treatments have a significant positive effect on OHRQoL post-treatment scores.

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A systematic review of patient-reported outcome measures (PROMs) in cystic fibrosis

BMJ Open ◽

10.1136/bmjopen-2019-033867 ◽

2020 ◽

Vol 10 (10) ◽

pp. e033867

Author(s):

Irushi Ratnayake ◽

Susannah Ahern ◽

Rasa Ruseckaite

Keyword(s):

Quality Of Life ◽

Cystic Fibrosis ◽

Outcome Measures ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Cochrane Library ◽

Life Questionnaire ◽

Health Measurement ◽

Patient Reported

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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