Health related quality of life in Indian children with cystic fibrosis

Kir, Devika; Gupta, Shruti; Jolly, George; Kalaivani, Mani; Lodha, Rakesh; Kabra, S. K.

doi:10.1007/s13312-015-0645-7

Cited by 5 publications

(7 citation statements)

References 25 publications

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“…Interestingly, in our study, young participants scored rather low in the latter (66.67), while the oldest group had the second highest median (83.34) in that domain, which was similar to older patients in the Borawska-Kowalczyk and Sands study [ 23 ]. High scores in the aspects of digestion were repeated in other studies, suggesting that although there are aspects of CF that may cause digestive problems, patients do not find this aspect of their lives to be as negatively influenced by the disease as other aspects [ 24 , 29 , 32 ]. There were almost no differences between age groups and the assessment of their social functioning (61.90 vs. 61.91 vs. 63.89), which shows that all CF patients suffer in that part of their life regardless of their age.…”

Section: Discussionmentioning

confidence: 90%

Polish Cystic Fibrosis Patients’ Health-Related Quality of Life and Its Influencing Factors: A Cross-Sectional, Single-Centre Study

Humaj-Grysztar,

Rachel,

Bonior

2024

Healthcare

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Cystic fibrosis (CF) is a disease characterized by long-term and troublesome symptoms that affect the patient’s life. This study aimed to assess and compare the health-related quality of life (HRQoL) of Polish CF patients and identify factors influencing it. The study group consisted of 79 patients (6 to 42 years old), who filled in an age-appropriate Cystic Fibrosis Questionnaire-Revised. Medical data were collected from each patient’s medical records. The domains with the highest HRQoL median were eating problems (88.89), digestive symptoms (77.78) and physical functioning (75.00). The lowest-rated domain was social functioning (61.90). Age negatively correlated with eight domains, and most strongly with treatment burden (rho = −0.474). Physical functioning positively correlated with all spirometry parameters, and most strongly with FEV1% (rho = 0.588). Treatment burden, body image and respiratory symptoms were positively correlated with all spirometry parameters except PEF%. Present exacerbations reduced scores in almost all domains, and in the MANCOVA model they were a significant factor differentiating patients’ HRQoL. The univariate analysis of MANCOVA showed the significant effects of both health condition (F = 8.32, p = 0.005) and the COVID-19 pandemic (F = 5.89, p = 0.018) on social functioning domain, and of the place of residence on body image (F = 5.60, p = 0.21). A decreasing HRQoL with increasing age and during exacerbations indicates that it is important to focus on these aspects of patients’ lives and ensure they received the necessary support from their healthcare providers.

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Section: Discussionmentioning

confidence: 90%

Polish Cystic Fibrosis Patients’ Health-Related Quality of Life and Its Influencing Factors: A Cross-Sectional, Single-Centre Study

Humaj-Grysztar,

Rachel,

Bonior

2024

Healthcare

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“…While some studies found a high level of agreement in parent-child reports, 20 21 others found that parents were better able to report HRQoL in observable domains, such as physical symptoms. [22][23][24][25] Two studies 26 27 noted that parent-child agreement was better for younger children than older.…”

Section: Mode and Methods Of Administrationmentioning

confidence: 99%

“…80 For paediatric populations, the most common method of administration was self-reporting, using instruments specially designed for use in children. Proxy reporting was uncommon and studies investigating the consistency of parent and child results found that it was better for observable symptoms [22][23][24][25] and younger children. 26 27 Edwards et al 26 hypothesised this finding was because parents are more involved in care for younger children and therefore have a better understanding of their HRQoL.…”

Section: Patient and Public Involvementmentioning

confidence: 99%

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

2020

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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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“…The participants who had both the adherence rate and the technique score 80% were considered to have good adherence with the correct technique. The secondary outcome measures were change in spirometry parameters, improvement in ease of sputum expectoration as assessed on a 10 cm visual analogue scale (as reported by participants), number of exacerbations, Shwachman-Kulczycki (SK) score, quality of life as assessed using the revised CF-QOL score (Hindi version) (12,13) from baseline to the end of The estimated sample size was 92 for an expected increase of 30% in adherence with the correct technique with 80% power and 5% alpha error, considering 10% lost to follow. We performed intention to treat analysis using standard statistical tests.…”

Section: Airway Clearance Therapy (Act) Is Integral To Management Of ...mentioning

confidence: 99%

Video-based direct observation physiotherapy in children with cystic fibrosis: a randomised controlled trial

Agarwal,

Jat,

Gupta

et al. 2024

Eur Respir J

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Health related quality of life in Indian children with cystic fibrosis

Abstract: Hindi versions of Cystic Fibrosis Questionnaire- Revised: Child, Adolescent and Parents instruments will act as an important step towards data on Health Related Quality of Life of Indian patients with cystic fibrosis.

Cited by 5 publications

References 25 publications

Polish Cystic Fibrosis Patients’ Health-Related Quality of Life and Its Influencing Factors: A Cross-Sectional, Single-Centre Study

Polish Cystic Fibrosis Patients’ Health-Related Quality of Life and Its Influencing Factors: A Cross-Sectional, Single-Centre Study

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

Video-based direct observation physiotherapy in children with cystic fibrosis: a randomised controlled trial

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