Quality Of Life Tools Research Articles

Translation and validation of chronic liver disease questionnaire (CLDQ) in Tamil language.

Chronic liver disease questionnaire (CLDQ), a self-administered quality-of-life (QOL) instrument for chronic liver disease (CLD) patients, was originally developed in English language. We aimed to translate and validate CLDQ in Tamil language (CLDQ-T). CLDQ-T, prepared by two forward and two backward independent translations by four bilingual (Tamil and English) persons, and repeated iterative modifications, was validated in adult, native-Tamil patients with CLD. CLDQ-T was re-tested in some patients 2weeks later. Convergent validity was assessed using Spearman's correlation, and discriminant validity by comparison with World Health Organization's brief QOL tool (WHOQOL-BREF). Reliability was assessed through internal consistency (Cronbach's alpha) and test-retest reliability (intra-class correlation). Cutoff used for statistical significance was p<0.05. The study included 126 patients (age: mean [SD] 46years [12.5]; male 104; cause: alcohol 42%, HBV 25%, HCV 4%, cryptogenic 29%; CTP class A 47%, B 37%, and C 16%). In convergent validity, all domains except the "abdominal domain" showed significant correlation between CLDQ-T and WHOQOL-BREF. Patients with severe disease had lower scores for all domains of CLDQ-T except the "abdominal" domain, but not for any of the domains for WHOQOL-BREF. Overall Cronbach's alpha was 0.942, and more than 0.7 for all the individual domains except the "activity" domain. On retesting in 44 (35%) patients, intraclass correlation coefficient was 0.879 for the overall CLDQ-T score and >0.700 for individual domains. CLDQ-T was easily understood and showed good performance characteristics in assessing QOL in Tamil-speaking patients with CLD.

Development and pilot testing of a parent-reported health-related quality of life measure for children on the ketogenic diet: The KetoQoL.

The aim of the present study was to develop a parent-reported tool that will measure health-related quality of life (HRQoL) in children following ketogenic diet (KD) therapies for refractory epilepsy once it has been pilot tested and analysed. Parents of children following KD therapies for epilepsy were recruited through a public hospital in Queensland, Australia, in 2012 and 2014. Qualitative semistructured interviews were conducted in 2012 with 13 parents who described changes seen in their child's HRQoL while on the KD. A quality of life tool (QoL) was developed by adapting the Quality of Life in Childhood Epilepsy tool based on results and themes analysed from the interviews. The KetoQoL was pilot tested with 18 parents recruited in 2014. Interrelationships between variables and questions were explored with exploratory factor analysis (EFA) to determine which questions had the greatest effect on QoL. The first iteration of the KetoQoL consisted of five main domains: physical, cognitive, social, intrapersonal and effects on the family. The domains were subdivided into 18 variables, totalling 54 items. EFA demonstrated that items from the physical and effects on the family domains had the greatest effect on QoL. KetoQoL is an HRQoL tool developed using a range of methods and assessed for both face and content validity. Further testing of KetoQoL is required to refine and confirm the factors. This work will enhance the evaluation of treatment effectiveness in children with epilepsy following the KD.

Quality of Life Enhancement Program for People with Temporal Lobe Epilepsy

People with epilepsy have challenges in their daily life and low quality of life. People clinically diagnosed with temporal lobe epilepsy and follow up were chosen for the study. Sample of 150 were chosen. 75 people with temporal lobe epilepsy having reduced quality of life, aged above 20 years and below 40 years, Men and women, graduates and non-graduates, lower and middle income group, rural and urban population were included in the study. People with head injury, previous history of brain surgery, depression, hearing and speech impairment were excluded from the study. They were assessment using the standard tool for quality of life of epilepsy QUOLIE – 31 (Barbara, 1993). Quality of life enhancement program was provided as a comprehensive structured program for a month. Results revealed that quality of life of people with temporal lobe epilepsy was significantly increased after the training program. Quality of life enhancement program enhances the quality of life of people with epilepsy and more effective when given as a comprehensive individual therapy along with cognitive behavior therapy.

Health-related quality of life in Chilean patients with chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) has a relevant impact on health-related quality of life (HRQoL). Short Form 6 dimensions (SF-6D) quality of life tool allows researchers to calculate preference-based utilities using data from SF-12 or SF-36 questionnaires. To provide normative values of SF-6D derived from SF-12 for Chilean patients with COPD. SF-6D utility index was calculated using data from the 2009/2010 Chilean National Health Survey. Sixty-nine male and 120 female patients with COPD participated in the survey. Data was stratified by gender, age, region, marital status, smoking status, monthly incomes, educational level and area. The mean (± SD) SF-6D utility index for Chilean patients with COPD was 0.65 ± 0.15. The scores for men and women were 0.68 ± 0.15 and 0.64 ± 0.15, respectively. Patients with high incomes and educational level reported higher SF-6D scores. Ceiling effect was not a limitation when SF-6D was used in these Chilean patients. The current study provides normative values of SF-6D derived from SF-12 for Chilean patients with COPD.

Chronic rhinosinusitis and mood disturbance.

This study is part of the Chronic Rhinosinusitis Epidemiology Study (CRES). The overarching aim is to determine factors that influence the onset and severity of chronic rhinosinusitis (CRS). The aim of this analysis is to determine whether those with CRS are more likely to report psychiatric morbidity and in particular mood disturbance compared with healthy controls. CRES consists of a study-specific questionnaire regarding demographic and socioeconomic factors and past medical history as well as a nasal symptom score (SNOT-22) and SF-36 (QoL - quality of life tool). Both of these tools contain mental health or emotional well-being domains. Participants were specifically asked whether they had ever consulted with their General Practitioner for anxiety or depression. Questionnaires were distributed to patients with CRS attending ENT outpatient clinics at 30 centres across the United Kingdom from 2007-2013. Controls were also recruited at these sites. Patients were divided into subgroups of CRS according to the absence/presence of polyps (CRSsNPs/CRSwNPs) or allergic fungal rhinosinusitis (AFRS). Consultations with a family physician for depression or anxiety were higher amongst those with CRS than controls, but this was only significant for those with CRSsNPs. Odds ratio (OR) for CRSsNPs vs controls: 1.89; OR for CRSwNPs: 1.40. Patients with CRS showed significantly higher mental health morbidity than controls across the mental health and emotional wellbeing domains of the SF-36 and SNOT-22. Mean difference in the mental health domain of SF-36 was 8.3 for CRSsNPs and 5.3 for CRSwNPs. For the emotional domain of SNOT-22, differences were 7.7 and 6.3 respectively. Depression and anxiety are significantly more common in patients with CRS compared to healthy controls, especially in those with CRSsNPs. This added mental health morbidity needs consideration when managing these patients in primary and secondary care settings.

PP135 Stakeholder Involvement In A Health Technology Assessment Of Hyperhidrosis

INTRODUCTION:Hyperhidrosis is characterized by uncontrollable excessive sweating, which occurs at rest, regardless of temperature. Symptoms can significantly affect quality of life. There is substantial variation in the secondary care treatment of hyperhidrosis and uncertainty regarding optimal patient management. The objective of the Health Technology Assessment (HTA) was to review the evidence and establish the expected value of undertaking additional research into effective interventions for the management of primary hyperhidrosis in secondary care. Capturing the perspectives of patients and clinicians treating hyperhidrosis was an important part of the research.METHODS:The assessment included a systematic review and economic model, including value of information analysis. Patients, dermatologists, a vascular surgeon and a specialist nurse (who set up the UK Hyperhidrosis Support Group) provided advice at various stages, including at an end-of-project workshop, to help interpret results and prioritize research recommendations.RESULTS:Patient and clinician advisors were unsurprised by the finding that there is evidence of a large effect of botulinum toxin injections on axillary hyperhidrosis symptoms in the short to medium term; there was consensus amongst patients and clinicians that botulinum toxin injections were very effective. The advisors agreed that a trial of botulinum toxin injections (plus anesthetic) versus iontophoresis for palmar hyperhidrosis would be useful. Patients and clinicians were happy with the sequence of treatments identified as being cost effective for axillary hyperhidrosis: iontophoresis, botulinum toxin injections, anticholinergic medication, curettage, endoscopic thoracic sympathectomy. All patients agreed that the Hyperhidrosis Quality of Life index (HidroQoL©) tool was superior to other commonly used tools for assessing quality of life in hyperhidrosis.CONCLUSIONS:Patients and clinicians considered the key findings of the systematic review and economic analyses to be appropriate. Advisors advocated a trial of botulinum toxin injections (plus anaesthetic) versus iontophoresis for palmar hyperhidrosis. Patients preferred the HydroQoL® tool over other commonly used quality of life tools in hyperhidrosis research.

Brentuximab Vedotin Demonstrates Significantly Superior Clinical Outcomes in Patients with CD30-Expressing Cutaneous T Cell Lymphoma Versus Physician's Choice (Methotrexate or Bexarotene): The Phase 3 Alcanza Study

Brentuximab Vedotin Demonstrates Significantly Superior Clinical Outcomes in Patients with CD30-Expressing Cutaneous T Cell Lymphoma Versus Physician's Choice (Methotrexate or Bexarotene): The Phase 3 Alcanza Study

Identifying and Classifying Quality of Life Tools for Assessing Transportation After Spinal Cord Injury

To explore quality of life domains and classify existing outcome tools used to assess the influence of transportation on quality of life after SCI.

Quality-of-life assessment as an outcomes measure in critical limb ischemia

Critical limb ischemia (CLI) is a diagnosis plagued by significant comorbidity and high mortality rates. Overall survival remains poor in this population regardless of the procedure-related success as demonstrated by freedom from amputation, intervention, and patency. The literature has traditionally focused on physician-centered and lesion-centered outcomes with regards to limb salvage procedures, but there remains a relative paucity of studies of CLI patients describing patient-centered outcomes such as quality of life (QoL), independent living, and ambulation status. Review of the available literature indicates patients do not always experience significant gains in their QoL after limb salvage interventions, despite reasonable graft patency, amputation-free survival, and limb salvage rates. Further research is required using QoL tools in a measurable and clinically relevant fashion to guide optimal quality care that maximizes patient-centered outcomes.

Development of a disease-specific quality of life questionnaire for patients with aplastic anemia and/or paroxysmal nocturnal hemoglobinuria (QLQ-AA/PNH)\u2014report on phases I and II

Acquired aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) are interrelated ultra-rare diseases. Quality of life (QoL) evaluation tools used in studies for AA and PNH are unspecific and designed for cancer patients (e.g., the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, EORTC QLQ-C30). Given the complexity of AA and PNH, variation in symptoms and treatments, younger age of many patients, and the fact that AA and PNH are not classified as malignant diseases, it is likely that cancer-specific questionnaires are inappropriate. We generate an AA/PNH-specific QoL questionnaire (QLQ-AA/PNH), performed according to EORTC guidelines. QoL issues were obtained from the literature and interviews with patients and physicians (phase I), then ranked by patients and physicians. In phase II, items were created. Patients in more than 25 German and Swiss cities were interviewed face to face. In phase I, interviews of 19 patients and 8 physicians specialized in AA/PNH treatment resulted in 649 QoL issues; these were condensed to 175 and graded according to their importance by 30 patients and 14 physicians (phase II). Five physicians took part in phases I and II. Altogether, 97 issues were rated important. Twelve EORTC QLQ-C30 items were not rated important, while several new QoL aspects were brought up. Modifications in wording and phrasing led to two questionnaires with 77 items regarding general QoL aspects and 20 items regarding medical care. Important QoL aspects of PNH/AA patients are inappropriately captured with available QoL tools. Developing a new QoL questionnaire specific for this patient group is warranted.

A Complete World Literature Review of Quality of Life (QOL) in Patients with Kidney Stone Disease (KSD).

Purpose of ReviewThe purpose of this study was to review the current evidence for quality of life (QOL) in patients with kidney stone disease (KSD).Recent FindingsA review of literature from inception to May 2016 for all prospective English language articles on QOL in patients with KSD was done. QOL studies post urological procedures or ureteric stents were excluded. Nine studies (1570 patients) were included of which most (n = 6) used the SF-36 QOL tool. Overall, seven of the nine studies demonstrated a lower QOL in patients with KSD. Bodily pain and general health were significantly lower in patients with KSD compared to their control groups.SummaryPatients with KSD have an overall lower QOL with most impact on bodily pain and general health domains. Compared to the scale of patients suffering from KSD, more work needs to be done in measuring QOL both in terms of ‘Stone specific’ QOL measuring tools and the quality/number of studies in this field.

Assessment tools for palliative care.

66 Background: Recent reviews have not comprehensively addressed palliative care (PC) assessment tools. This project summarizes the extent of evidence about PC assessment tools for patients and families, and how tools have been used for clinical care, quality indicators, and evaluation of interventions. Methods: We searched MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews for systematic reviews of assessment tools for PC, from January 2007 to March 2016. We searched the grey literature for domains without systematic reviews, and for domains with systematic reviews &gt; three years old. Paired investigators independently screened search results and grey literature to determine eligibility, and assessed risk of bias of systematic reviews. The team selected the most recent and highest-quality systematic reviews for each domain. One investigator abstracted information, and a second investigator checked the information. Results: Using the National Consensus Project Palliative Care Guidelines domains, we included nine systematic reviews with 167 tools, and six tools from grey literature. Most tools were in physical, psychological, psychiatric, and social aspects of care, care at the end of life, and tools that cross domains (quality of life and caregiver-reported experience). Only two tools directly addressed spiritual aspects and none addressed cultural or patient-reported experience. Internal consistency reliability was evaluated for almost all tools; most reported construct validity; and few reported responsiveness (sensitivity to change). Few studies evaluated the use of assessment tools in quality indicators or clinical practice. A systematic review of 38 PC interventions and the assessment tools used found that at least 25 interventions included physical, psychosocial and psychiatric, and quality of life tools, but the tools varied extensively, and only nine included patient experience tools. Conclusions: Although assessment tools exist in many PC domains, tools are needed to assess spiritual and cultural aspects of care, and patient-reported experience. Research is needed concerning: tools in clinical practice and quality of care; comparison of existing tools; and evaluation and dissemination tools with evidence of responsiveness.

The impact of lung cancer surgery on quality of life trajectories in patients and family caregivers

ObjectivesFamily caregivers (FCGs) play an important role in the quality of life (QOL) of lung cancer patients. FCGs experience significant psychological distress related to their caregiving role, but there is relatively little data about FCG QOL after cancer surgery. We sought to describe QOL trajectories for patients and their FCGs after lung cancer surgery. MethodsThis is a secondary analysis of a larger, prospective QOL study, testing the effectiveness of an interdisciplinary palliative care intervention for lung cancer patients and FCGs in a single institution. The intervention included interdisciplinary care planning and formal education sessions for both patients and FCGs. This subset analysis included patients who underwent surgery and had a matching FCG with complete QOL data (41 pairs of patients and caregivers out of 112 surgical patients). Patient QOL was assessed with the Functional Assessment of Cancer Therapy-Lung tool. FCG QOL was assessed with the FCG version of the City of Hope QOL tool. Psychological distress was assessed using the Distress Thermometer. ResultsPsychological distress levels were highest for patients (3.8/10) and FCGs (5.1/10) before surgery. Distress levels decreased among patients at six (2.9/10) and 12 weeks (2.2/10, p=0.001) later, but remained elevated among FCGs (4.2/10 and 4.4/10, p=0.157). Compared with usual care, patients in the intervention group reported improved physical and functional QOL outcomes at 12 weeks (p<0.01), but there was no significant benefit seen for FCGs in any domain (p>0.05). ConclusionsFCGs of lung cancer patients experience significant psychological distress. FCGs continue to have impaired QOL 3 months after surgery. The trajectory of QOL for FCGs does not mirror that of patients. Our palliative care intervention showed improved QOL outcomes for this subset of patients but was not effective for their FCGs.Trial Registration: NCI sponsored, trial identifier NCT00823667 https://clinicaltrials.gov/show/NCT00823667.

Patient factors associated with quality of life in atrial fibrillation

As treatment options for atrial fibrillation (AF) increase, more attention is focused on patients' experiences and quality of life (QoL). However, little is known about the factors associated with these outcomes. The Atrial Fibrillation Effect on QualiTy-of-life (AFEQT) is a disease-specific QoL tool for AF, with domain and summary scores ranging from 0 (the worst QoL) to 100. Using multivariable linear regression, we evaluated factors associated with baseline AFEQT Summary and Subscale Scores in ORBIT AF, a large, community-based AF registry. Independent associations were reported as coefficient estimates in scores and 95% confidence intervals (CI). Overall, AFEQT was assessed in 2007 AF outpatients from 99 sites. Median age (IQR) was 76 years (67-82) and 43% were female. The median AFEQT summary score was 82 (67-94). Female sex, younger age, new onset AF, higher heart rate, obstructive sleep apnea, symptomatic heart failure (HF), chronic obstructive pulmonary disease and coronary artery disease were all independently associated with reduced QoL. Female sex [Estimate -7.03, 95% CI (-9.31, -4.75)] and new onset versus permanent AF [Estimate -7.44, 95% CI (-11.03, -3.84)] were independently associated with increased symptoms. NYHA Class III or IV HF [Estimate -14.44, 95% CI (-19.46, -8.76)] and female sex [Estimate -7.91, 95% CI (-9.95, -5.88)] were most independently associated with impaired daily activities. QoL in patients with AF varies widely and is associated with several patient factors. Understanding patient factors independently associated with worse QoL can be a foundation for tailoring treatment.

Current Quality-of-Life Tools Available for Use in Contact Dermatitis.

Contact dermatitis is a common dermatologic condition that can cause significant impairment in patients' overall quality of life (QoL). This impact is separate and potentially more clinically relevant than one's disease "severity" in contact dermatitis and should be consistently addressed by dermatologists. Despite this, QoL tools specific to contact dermatitis are lacking, and there is little consistency in the literature regarding the tool used to evaluate clinical response to therapies. Measurements currently available to evaluate disease-related QoL in contact dermatitis fit into 1 of the following 3 general types: generic health-related QoL measures, dermatology-related QoL measures, or specific dermatologic disease-related QoL measures. This article reviews the strengths and weaknesses of existing QoL tools used in contact dermatitis including: Short Form Survey 36, Dermatology Life Quality Index, Skindex-29, Skindex-16, Dermatology-Specific Quality of Life, and Fragrance Quality of Life Index.

The Development of a Nystagmus-Specific Quality-of-Life Questionnaire

To develop a nystagmus-specific quality-of-life (QOL) questionnaire derived from patient concerns based on eudaimonic aspects of well-being. Cross-sectional study. A total of 206 participants with nystagmus for factor analysis phase and an additional 42 participants with nystagmus for construct validity phase. Questionnaire items were written on the basis of the 6 domains of everyday living affected by nystagmus that were elicited by previous semistructured interviews conducted with 21 people with nystagmus. After consultation with 8 nystagmus experts, 37 items were administered to 206 people with nystagmus. Factor analysis was used to identify latent factors among the items and identify items to propose new nystagmus QOL scales. Cronbach's alpha was used to assess the internal reliability of the new scales. To assess for discriminate and concurrent validity between the new nystagmus scales and an existing vision-related QOL tool, the Visual Function Questionnaire-25 (VFQ-25) was administered to 42 additional participants. Questionnaire response scores on nystagmus-specific QOL items. The factor analysis revealed the retention of 29 items to form a measure comprising 2 distinct subscales reflecting "personal and social" and "physical and environmental" functioning as relating to nystagmus-specific QOL. The Cronbach's alpha coefficients for the "personal and social" functioning scale and "physical and environmental" functioning were 0.95 and 0.93, respectively. Tests for validity of the measure, consistent with a priori predictions, when compared with the VFQ-25, revealed the "physical and environmental" subscale showed concurrent validity (0.88), whereas the "personal and social" subscale was demonstrated to have discriminative validity (0.81). We have developed a 29-item, nystagmus-specific QOL questionnaire (NYS-29) based on eudaimonic aspects of well-being with subscales that address not only physical functioning but also psycho-social issues. The NYS-29 is grounded in the perspectives and concerns of those who have nystagmus and can be used to determine the impact of nystagmus on daily living in terms of both physical and psychosocial aspects.

The role of in-depth reproductive health counseling in addressing reproductive health concerns in female survivors of nongynecologic cancers

ABSTRACTThe purpose of this study was to characterize reproductive concerns among female cancer survivors and determine the role of targeted counseling in improving overall reproductive quality of life (QOL). A survey was administered to women from the California Cancer Registry, ages 18-40, with nongynecologic cancers diagnosed from 1993 to 2007, who received fertility-compromising treatments. In total, 356 women completed the survey, which included questions regarding their reproductive health counseling history and the reproductive concerns scale (RCS), a validated reproductive QOL tool. Factors independently associated with higher RCS scores included a desire for children at the time of diagnosis, posttreatment infertility, treatment with chemoradiation or bone marrow transplant, and income less than $100,000 per year at diagnosis. Among the highest reported reproductive concerns were those related to loss of control over one's reproductive future and concerns about the effect of illness on one's future fertility. Across our population and independent of age, in-depth reproductive health counseling prior to cancer treatment was associated with significantly lower RCS scores. Our findings highlight the importance of early counseling and targeting high-risk groups for additional counseling after completion of cancer treatment. This approach may be an effective strategy for optimizing long-term reproductive QOL in this vulnerable population.

Quality of life in patients with seborrhoeic dermatitis in KwaZulu-Natal, South Africa

428 May 2016, Vol. 106, No. 5 Quality of life in patients with seborrhoeic dermatitis in KwaZuluNatal, South Africa To the Editor: Skin diseases may have a severe effect on the quality of life (QOL) of affected individuals,[1,2] but their impact has rarely been investigated in the developing world. In South Africa, there have been no studies conducted on patients with sebor­ rhoeic dermatitis (SD). A cross­sectional study was undertaken in the ILembe District, KwaZulu­Natal Province, assessing the QOL of patients presenting with SD, correlating clinical severity and demographic parameters. Forty­five consenting participants, with a clinical diagnosis of SD, were invited to participate. QOL was assessed using the Dermatology Life Quality Index (DLQI).[3] The severity of the condition was assessed by a dermatologist and graded at individual sites for erythema, thickness, scaling and pruritus on a three­point scale. Body surface area involvement was calculated using the rule of nines and the sites of involvement were recorded. A detailed demographic profile was completed for each patient (Table 1). The median severity score was 24 and the median DLQI score was 17, which equates to a very large effect on the QOL.[3] The QOL varied depending on sex, educational level, ethnic origin, home language, marital status, residence, HIV status and site of involvement. Female patients were more negatively influenced by the disease, confirming the findings in three other studies.[4­6] Patients with no formal schooling were more adversely affected. The way the questions were interpreted and the perception of disability may explain the differences in DLQI between the groups. Visible body areas and groin involvement had a greater impact on a patient’s QOL. As appearance plays an important role in our society, patients felt more embarrassed and self­conscious. In addition groin involvement may affect intimacy with a partner. SD has a higher prevalence in patients with HIV and has been found in up to 40% of seropositive patients,[7] notably, HIV­ positive patients (n=37, 82.2%), with a CD4 count 1 year (n=13, 46.6%) had higher DLQI and severity scores. Although the introduction of ARVs has reduced the number of opportunistic dermatological conditions seen, there has been no change in the prevalence of primary HIV­related inflammatory diseases.[7] This is illustrated by a lack of significant associations between HIV­positive patients on ARVs v. those who were not on ARVS and QOL (on ARVs n=29, median 18; not on ARVs n=8, median 17). This study highlights that QOL tools are valuable in understanding the impact of skin disorders and will help in providing holistic, comprehensive management, offering a patient’s own perspective of their debilitating skin condition.

Towards Tailored Patient's Management Approach: Integrating the Modified 2010 ACR Criteria for Fibromyalgia in Multidimensional Patient Reported Outcome Measures Questionnaire.

Objectives. To assess the validity, reliability, and responsiveness to change of a patient self-reported questionnaire combining the Widespread Pain Index and the Symptom Severity Score as well as construct outcome measures and comorbidities assessment in fibromyalgia patients. Methods. The PROMs-FM was conceptualized based on frameworks used by the WHO Quality of Life tool and the PROMIS. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction were achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented. The questionnaire included the modified ACR criteria main items (Symptom Severity Score and Widespread Pain Index), in addition to assessment of functional disability, quality of life (QoL), review of the systems, and comorbidities. Every patient completed HAQ and EQ-5D questionnaires. Results. A total of 146 fibromyalgia patients completed the questionnaire. The PROMs-FM questionnaire was reliable as demonstrated by a high standardized alpha (0.886–0.982). Content construct assessment of the functional disability and QoL revealed significant correlation (p < 0.01) with both HAQ and EQ-5D. Changes in functional disability and QoL showed significant (p < 0.01) variation with diseases activity status in response to therapy. There was higher prevalence of autonomic symptoms, CVS risk, sexual dysfunction, and falling. Conclusions. The developed PROMs-FM questionnaire is a reliable and valid instrument for assessment of fibromyalgia patients. A phased treatment regimen depending on the severity of FMS as well as preferences and comorbidities of the patient is the best approach to tailored patient management.

Quality of life in patients with chronic thromboembolic pulmonary hypertension.

Patients with chronic thromboembolic pulmonary hypertension (CTEPH) experience debilitating symptoms that have a negative impact on their quality of life (QoL) in terms of physical capability, psychological wellbeing and social relationships. The use of QoL measurement tools is important in the assessment of treatment efficacy and in guiding treatment decisions. However, despite the importance of QoL, particularly to the patient, it remains under-reported in clinical studies of CTEPH therapy. CTEPH is unique in pulmonary hypertension in that it is potentially curable by surgery; however, a proportion of patients either have residual PH following surgery or are not operable. Although some patients with CTEPH have been treated off-label with pulmonary arterial hypertension-specific therapies, there have been few randomised controlled trials of these therapies in patients with CTEPH. Moreover, in these trials QoL outcomes are variably assessed, and there is little consistency in the tools used. Here we review the assessment of QoL in patients with CTEPH and the tools that have been used. We also discuss the effect of surgical intervention and medical therapies on QoL. We conclude that further studies of QoL in patients with CTEPH are needed to further validate the optimal QoL tools.