The Impact of Fragility Fractures on Health-Related Quality of Life in Patients With Primary Sclerosing Cholangitis

Raszeja‐Wyszomirska, Joanna; Kucharski, Robert; Safranow, Krzysztof; Miazgowski, Tomasz

doi:10.5812/hepatmon.25539

Cited by 13 publications

(18 citation statements)

References 30 publications

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“…The widely used health status questionnaire SF‐36 was used to assess patients’ QoL . SF‐36 is not disease specific and has been translated and validated for speakers of the German language .…”

Section: Methodsmentioning

confidence: 99%

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Blüthner

Bednarsch

Stockmann

et al. 2019

J Parenter Enteral Nutr

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Background Parenteral nutrition (PN) is a life‐sustaining therapy for patients with chronic intestinal failure (IF) but inevitably has an impact on patients’ quality of life (QoL). The purpose of this study was to examine multiple aspects of QoL by utilizing the standardized Short Form 36 (SF‐36) health survey. Methods Between 2014 and 2017, a total of 90 adult patients with IF who were receiving PN were prospectively enrolled in an observational study. All subjects underwent nutrition status assessment, liver assessment, blood tests, and QoL assessment based on the SF‐36. Univariate and multivariable analyses were performed to identify determinants of 8 domains and 2 summary scales of the SF‐36. Results Analysis of the SF‐36 questionnaire data showed that QoL was significantly worse compared with the general German population across all categories. Multivariable analysis revealed that bioelectrical impedance analysis of phase angle (1/10 categories), stoma/fistula (4/10 categories), oral intake (4/10 categories), infusions per week (1/10 categories), duration of PN (1/10 categories), citrulline (4/10 categories), and hemoglobin levels (1/10 categories) are independent risk factors affecting QoL. Conclusion This study uses the largest cohort of IF patients assessed by the standardized SF‐36 questionnaire to comprehensively analyze QoL. Presence of oral intake, presence of ostomy, and citrulline levels were independently correlated with 4 of 10 categories of the SF‐36. These results indicate that to improve QoL for IF patients, clinical care should focus on addressing the social and emotional value of oral intake, educational interventions, early stoma closure, and application of new targeted therapies.

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Section: Methodsmentioning

confidence: 99%

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Blüthner

Bednarsch

Stockmann

et al. 2019

J Parenter Enteral Nutr

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“…Quality appraisal with the AXIS tool indicated four studies as being of moderate quality [ 11 , 12 , 42 , 47 ] and six as being of low quality [ 32 , 45 , 46 , 48 , 50 , 51 ]. Low ratings were mainly due to a lack of information about the selection of participants, the representativeness of the sample, a lack of information about non-responders, a high proportion of non-responders, and significant differences between responders and non-responders which may have biased outcomes.…”

Section: Resultsmentioning

confidence: 99%

Quality of life in primary sclerosing cholangitis: a systematic review

Marcus

Stone

Krooupa

et al. 2021

Health Qual Life Outcomes

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Background Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?. Methods We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists. Results We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes. Conclusion The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.

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“…Ten disease-specific measures included: the Short form Liver Disease Quality of Life questionnaire (LDQOL 1.0) [ 32 ]; CLDQ [ 27 , 29 , 38 , 39 , 42 , 43 ]; the NIDDK-QA [ 26 , 28 ]; Rome II Modular Questionnaire; the Cleveland Global Quality of Life questionnaire (CGQOL) [ 34 ]; the Short Inflammatory Bowel Disease Questionnaire (SIBDQ) [ 32 , 47 ]; Oresland scale; PSC PRO; [ 43 ] PBC-27 [ 35 , 40 , 41 ]; and PBC-40 [ 32 , 35 , 40 , 41 , 43 ].…”

Section: Resultsmentioning

confidence: 99%

Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review

Isa

Turner

Kaur

et al. 2018

Health Qual Life Outcomes

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BackgroundPrimary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients’ to-date. The aim of the systematic review was to: (a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC.MethodsA systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist.ResultsThirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n = 15) and Chronic liver disease questionnaire (CLDQ) (n = 6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study.ConclusionA wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.Electronic supplementary materialThe online version of this article (10.1186/s12955-018-0951-6) contains supplementary material, which is available to authorized users.

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The Impact of Fragility Fractures on Health-Related Quality of Life in Patients With Primary Sclerosing Cholangitis

Cited by 13 publications

References 30 publications

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Quality of life in primary sclerosing cholangitis: a systematic review

Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review

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