scholarly journals Differences in men and women suffering from CRSwNP and AERD in quality of life

Author(s):  
Tina J. Bartosik ◽  
David T. Liu ◽  
Nicholas J. Campion ◽  
Sergio Villazala-Merino ◽  
Stefan Janik ◽  
...  

Abstract Purpose While the overall impact of chronic rhinosinusitis (CRS) on patients’ health is diverse, many affected individuals have a substantially impaired quality of life (QoL). The aim of this study was to evaluate the impact of sex-associated differences specifically in the subgroups of CRS with nasal polyps (CRSwNP) and aspirin-exacerbated respiratory disease (AERD) by assessing QoL parameters in women and men separately. Methods In a retrospective single-center study, 59 patients with CRSwNP (39 males and 20 females) and 46 patients with AERD (18 males and 28 females) were included. Patient-reported outcome measures (PROM) evaluating QoL via the Sino-Nasal Outcome Test-20 German Adapted Version (SNOT-20 GAV) as well as the total polyp score (TPS) were analysed. Results There was no significant difference in TPS (p = 0.5550) and total SNOT-20 GAV scores (p = 0.0726) between male or female patients with CRSwNP or AERD. Furthermore, no significant sex differences were found within disease groups regarding the subcategories of the SNOT-20 GAV items. Conclusion Thus, quality of life is severely impaired in patients suffering from various forms of CRS regardless of their sex.

Author(s):  
Darshini R Ayton ◽  
Madeleine L Gardam ◽  
Elizabeth K Pritchard ◽  
Rasa Ruseckaite ◽  
Joanne Ryan ◽  
...  

Abstract Background and Objectives Patient-reported outcome measures (PROMs) captures the patient’s perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient’s perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. Research Design and Methods Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. Results Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. Discussion and Implications PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.


2021 ◽  
pp. 105566562110671
Author(s):  
Roan L. M. Ploumen ◽  
Samuel H. Willemse ◽  
Ronald E. G. Jonkman ◽  
Jitske W. Nolte ◽  
Alfred G. Becking

Measuring the impact of orthognathic surgery on quality of life is of significant importance in patients with cleft deformities. Standardized tools such as patient-reported outcome measures (PROMs) are needed to fully comprehend patients’ needs and perceptions. Therefore, the availability of reliable, valid, and comprehensive questionnaires for patients is essential. The aim of this study is to identify PROMs measuring the impact of orthognathic surgery on quality of life in patients with cleft deformities and to evaluate the identified PROMs. A systematic search of the literature was performed according to the preferred reporting items for systematic reviews and meta-analysis guidelines. All validated PROMs, regarding the impact of orthognathic surgery on quality of life in patients with cleft deformities, were identified and assessed according to the quality criteria proposed for measurement properties of health status questionnaires. An electronic search yielded 577 articles. After a full-text review of 87 articles, 4 articles met the inclusion criteria, comprising 58 PROMs. Of these 58 PROMs, 1 PROM (the CLEFT-Q) has been validated to measure the impact of orthognathic surgery on patients with a facial cleft. Evaluation of methodological quality of the included articles and assessment of the measurement properties of the CLEFT-Q show that the CLEFT-Q scores relatively good for all available measurement properties, making it suitable for immediate use. The CLEFT-Q was found to be the only valid instrument so far to measure the impact of orthognathic surgery on the quality of life in patients with cleft deformities.


2021 ◽  
Author(s):  
Hayley A Hutchings ◽  
Kirsty Lanyon ◽  
Steven Lister ◽  
Raza Alikhan ◽  
Claire Fegan ◽  
...  

Abstract BackgroundAtrial fibrillation (AF) is the most common cardiac arrhythmia. Oral anticoagulation therapies (OATs) are often prescribed in conjunction with medications to restore normal heart rate rhythm which can limit the risk of an AF-related stroke and systemic thromboembolism. However, they are associated with the serious side effect of bleeding. Both clinically relevant non-major bleeding (CRNMB) and major bleeding while anticoagulated are believed to have a significant impact on patient quality of life (QoL). There is currently limited research into the effect bleeding has on QoL. The aim of this study is to evaluate the feasibility of identifying and recruiting patients diagnosed with AF, who are taking OATs and have recently experienced a bleed and collecting information on their QoL.MethodsWe will recruit a minimum of 50 patients to this cross sectional, observational study. We will recruit from general practices, secondary care and through an online AF forum. We will ask participants to complete three validated patient-reported outcome measures (PROMs: EQ5D, AFEQT and PACT-Q), approximately four weeks following a bleed and again 3 months later. We will randomly select a subset of 10 participants (of those who agree to be interviewed) to undergo a structured interview with a member of the research team to explore the impact of bleeding on their QoL and to gain feedback on the three PROMs used. We will undertake a descriptive analysis of the PROMs and demographic data. We will analyse the qualitative interviews thematically to identify key themes. DiscussionWe aim to establish if it is possible to recruit patients and use PROMs to collect information regarding how patient QoL is affected when they experience either a CRNMB or major bleed, while taking OATs for the management of AF. We will also explore the appropriateness or otherwise of the three identified PROMs for assessing quality of life following a bleed. Trial registrationThe trial has been adopted onto the NIHR Portfolio (I.D. #47771) and registered with www.ClinicalTrials.gov (#NCT04921176) retrospectively registered in June 2021.


2018 ◽  
Vol 19 (3) ◽  
pp. 331-338 ◽  
Author(s):  
Monal Yuwanati ◽  
Rima S Gondivkar

ABSTRACT Aim The aim of this study was to explore the patients’ perspectives about the impact of oral submucous fibrosis (OSF) on life quality. Materials and methods Thirty clinically diagnosed OSF patients with a wide degree of disease severity and diverse range of sociodemographic profile were included in this study. Fourteen participants were interviewed and four focus group discussions were conducted in nonclinical settings. The audio recordings were anonymized, transcribed, and translated in English from Marathi language. Data were analyzed using an in-depth narrative thematic analysis method. Results Four main themes evolved from the interviews: (1) discomfort and functional impairment; (2) psychological wellness; (3) physical wellness, and (4) social wellness. Majority of the participants discussed about discomfort and functional impairment. Participants also reported greater impact of OSF on psychological and social wellness. Conclusion This study demonstrated the impact of OSF on different aspects of participant’s life. “Discomfort and functional impairment” was noticed to be the most recognized theme by our participants. However, OSF also has impacts on other important domains, namely psychological, social, and physical wellness. Clinical significance The patient-reported outcome (PRO) measure (PROM) reflects an integral aspect of general health and well-being and thus can be used to elucidate the impact of OSF on the quality of life (QoL) of affected individuals. These patients’ perspectives should be taken into consideration along with thorough clinical examination to decide and effectively manage the overall health care needs of the OSF patients. How to cite this article Gondivkar SM, Bhowate RR, Gadbail AR, Sarode SC, Gondivkar RS, Yuwanati M, Patil S. Quality of Life-related “Patient-reported Outcome Measures” in Oral Submucous Fibrosis Patients. J Contemp Dent Pract 2018;19(3):331-338.


2021 ◽  
pp. 1-7
Author(s):  
Claire R. Stewart ◽  
Leah Algu ◽  
Rakhshan Kamran ◽  
Cameron F. Leveille ◽  
Khizar Abid ◽  
...  

At least 80% of patients with psoriasis will have nail involvement during their lifetimes. Understanding quality of life (QoL) impact of this condition and associated treatments is of utmost importance. Study objectives were to review the available literature describing patient-reported QoL outcomes in nail psoriasis and relationship with disease severity and treatment. A literature search was performed for English-language articles published prior to August 1, 2020. Articles were included in the review if primary data and validated patient-reported outcome measures assessing QoL were presented, and nail involvement was specifically examined. Fifteen studies were included in the final analysis. Patients with nail psoriasis had higher Psoriasis Area Severity Index and Dermatology Life Quality Index scores than those with psoriasis without nail involvement. The largest percent improvement in QoL score was associated with adalimumab. Studies investigating topicals, intralesionals, and systemic treatments were excluded since only biologic studies utilized validated patient-reported outcome measures. This review affirms that nail psoriasis is physically and emotionally distressing, warranting prompt treatment. Increased efforts are needed to address the impact of treatment on patient QoL using validated outcome measures that assess cosmetic, physical, and social problems.


Diabetologia ◽  
2021 ◽  
Author(s):  
Jill Carlton ◽  
Joanna Leaviss ◽  
Frans Pouwer ◽  
Christel Hendrieckx ◽  
Melanie M. Broadley ◽  
...  

Abstract Aims/hypothesis It is generally accepted that hypoglycaemia can negatively impact the quality of life (QoL) of people living with diabetes. However, the suitability of patient-reported outcome measures (PROMs) used to assess this impact is unclear. The aim of this systematic review was to identify PROMs used to assess the impact of hypoglycaemia on QoL and examine their quality and psychometric properties. Methods Systematic searches (MEDLINE, EMBASE, PsycINFO, CINAHL and The Cochrane Library databases) were undertaken to identify published articles reporting on the development or validation of hypoglycaemia-specific PROMs used to assess the impact of hypoglycaemia on QoL (or domains of QoL) in adults with diabetes. A protocol was developed and registered with PROSPERO (registration no. CRD42019125153). Studies were assessed for inclusion at title/abstract stage by one reviewer. Full-text articles were scrutinised where considered relevant or potentially relevant or where doubt existed. Twenty per cent of articles were assessed by a second reviewer. PROMS were evaluated, according to COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines, and data were extracted independently by two reviewers against COSMIN criteria. Assessment of each PROM’s content validity included reviewer ratings (N = 16) of relevance, comprehensiveness and comprehensibility: by researchers (n = 6); clinicians (n = 6); and adults with diabetes (n = 4). Results Of the 214 PROMs used to assess the impact of hypoglycaemia on QoL (or domains of QoL), seven hypoglycaemia-specific PROMS were identified and subjected to full evaluation: the Fear of Hypoglycemia 15-item scale; the Hypoglycemia Fear Survey; the Hypoglycemia Fear Survey version II; the Hypoglycemia Fear Survey-II short-form; the Hypoglycemic Attitudes and Behavior Scale; the Hypoglycemic Confidence Scale; and the QoLHYPO questionnaire. Content validity was rated as ‘inconsistent’, with most as ‘(very) low’ quality, while structural validity was deemed ‘unsatisfactory’. Other measurement properties (e.g. reliability) varied, and evidence gaps were apparent across all PROMs. None of the identified studies addressed cross-cultural validity or measurement error. Criterion validity and responsiveness were not assessed due to the lack of a ‘gold standard’ measure of the impact of hypoglycaemia on QoL against which to compare the PROMS. Conclusions/interpretation None of the hypoglycaemia-specific PROMs identified had sufficient evidence to demonstrate satisfactory validity, reliability and responsiveness. All were limited in terms of content and structural validity, which restricts their utility for assessing the impact of hypoglycaemia on QoL in the clinic or research setting. Further research is needed to address the content validity of existing PROMs, or the development of new PROM(s), for the purpose of assessing the impact of hypoglycaemia on QoL. Prospero registration CRD42019125153 Graphical abstract


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 5426-5426
Author(s):  
Angela Molga ◽  
Michelle Wall ◽  
Rakchha Chhetri ◽  
Amilia Wee ◽  
Deepak Singhal ◽  
...  

Objectives: Older people (≥65 years) living with myelodysplastic syndrome (MDS) have a poor prognosis, often compounded by comorbidities and polypharmacy. Polypharmacy is usually defined as the regular use of ≥5 medications and is common among older adults; however the appropriateness of therapy in older patients with malignancies requires a consideration of quality of life as well as prognosis rather than a discrete number. Such a patient-centred approach would identify potentially inappropriate medications (PIM) and also potentially omitted medications (POM). There is little data on the impact of PP, PIM and POM on patient reported outcome measures at baseline in older people with MDS. This study assesses the prevalence of PP, PIM and POM in older patients with MDS. Methods: Patients ≥65 years with MDS were enrolled from Jan 2014 to Nov 2018 at the Royal Adelaide Hospital. Patients were included in the study if they were seen by the Geriatrician for a Comprehensive Geriatric Assessment (CGA; Table 1), had geriatric screening assessments performed for frailty, completed patient-reported outcome measures using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) at enrolment, specifically the domains of physical condition of medical treatment interfering on family (q26), social (q27) and financial aspects (q28), overall health (q29) and overall quality of life (q30). Results: The average age of patients at the time of enrolment was 75 years (62-89 years). Other patient characteristics are in Table 1. Forty-one (64%) patients were on supportive care and 21 (33%) were treated with azacitidine. The prevalence of PP, PIM and POM was 39% (25/64), 47% (30/64), and 64% (41/64) respectively. These were evaluated by a Geriatrician/Clinical Pharmacologist using the STOPP/START criteria after reviewing the CGA reports for each patient. The most common PIM was aspirin without an evidence-based clinical indication. The number of PIM ranged from 1 to 7 for an individual patient. The most common POM were vaccinations - only 1/64 (2%) patient had a documented influenza and pneumococcal vaccination status as per national guidelines, followed by laxatives for concurrent opioid use. Twenty-three percent (15/64) reported an overall poorer quality of life (defined as q30<4), of which 80% (12/15) were on supportive care and 20% (3/15) were on azacitidine. Nineteen percent (12/64) reported poor overall health (q29 <4), 20% (13/64) reported that their physical condition or medical treatment interfered with their family life, 31% (18/64) felt the impact on their social activities, and 13% (8/64) reported financial difficulties as a result of their condition or treatment. The majority were on supportive treatment - 10/13 (77%), 11/18 (61%), 6/8 (75%) respectively. The presence of PIMs (44 vs. 86 months; p=0.18) and POM (57 vs. 45 months; p=0.9) were associated with shortened survival however this was not statistically significant. Additionally PIMs, POMS, and polypharmacy were not associated with adverse perceptions on family, social or financial aspects of daily life. Similarly, there was no difference in cognitive frailty (defined as having an abnormal score for MMSE or other cognitive assessments or a confirmed diagnosis of dementia on treatment), physical frailty (defined as having an abnormal score on any one or more of the physical domains: iADL, ADL, TUG, falls) or multimorbidity (defined as having an abnormal score for CCI or MDS-CI). Conclusions: A significant proportion of older patients with MDS are multimorbid and report adverse impacts related to their condition on their family, social and financial aspects of their lives. Older patients are just as likely to have beneficial medications omitted as having potentially inappropriate medications requiring intervention. This study highlights the importance of deprescribing and reviewing goals of therapy with consideration for patient reported outcomes. Disclosures No relevant conflicts of interest to declare.


Author(s):  
Laure Gossec ◽  
Tania Gudu ◽  
Maarten de Wit

Psoriatic arthritis (PsA) is a chronic, potentially severe disease with an important impact on the lives of people who have this disease. The impact of PsA is wide-reaching, and both physical but also mental aspects of quality of life can be modified by this disease. Thus, the measurement of the patient’s status rests in part, on the assessment of patient-reported outcomes, i.e. questionnaires to assess different aspects of life. In the present chapter, we will discuss the impact of the disease from a qualitative point of view, and review different patient-reported questionnaires which are either specific to PsA, or generic, and which are used to assess people with PsA.


2017 ◽  
Vol 33 (S1) ◽  
pp. 12-13
Author(s):  
Munira Essat ◽  
Ahmed Aber ◽  
Patrick Phillips ◽  
Edith Poku ◽  
Helen Buckley Wood ◽  
...  

INTRODUCTION:Patient-reported outcome measures (PROMs) provide a way to measure the impact of a disease and its associated treatments on the quality of life from the patients’ perspective. The aim of this review was to identify PROMs that have been developed and/or validated in patients with carotid artery disease (CAD) undergoing revascularization, and to assess their psychometric properties and examine suitability for research and clinical use.METHODS:Eight electronic databases including MEDLINE and CINAHL were searched from inception to May 2015 and updated in the MEDLINE database to February 2017. A two-stage search approach was used to identify studies reporting the development and/or validation of relevant PROMs in patients with CAD undergoing revascularization. Supplementary citation searching and hand-searching reference lists of included studies were also undertaken. The Consensus-based standards for the selection of health measurement instruments (COSMIN) and Oxford criteria were used to assess the methodological quality of the included studies, and the psychometric properties of the PROMs were evaluated using established assessment criteria.RESULTS:Six PROMs, reported in five studies, were identified: 36-Item Short Form Health Survey (SF-36), Euro-QoL-5-Dimension Scale (EQ-5D), Hospital Anxiety and Depression Scale (HADS), Dizziness Handicap Inventory (DHI), Quality of life for CAD scale by Ivanova 2015 and a disease-specific PROM designed by Stolker 2010. The rigour of the psychometric assessment of the PROMs were variable with most only attempting to assess a single psychometric criterion. No study reported evidence on criterion validity and test-retest reliability. The overall psychometric evaluation of all included PROMs was rated as poor.CONCLUSIONS:This review highlighted a lack of evidence in validated PROMs used for patients undergoing carotid artery revascularization. As a result, the development and validation of a new PROM for this patient population is warranted in order to provide data which can supplement traditional clinical outcomes (stroke >30 days post-procedural, myocardial infarction and death), and capture changes in health status and quality of life in patients to help inform treatment decisions.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.


Sign in / Sign up

Export Citation Format

Share Document