Health-related Quality Of Life Issues Research Articles

Challenges of Disorders of Sex Development: Diverse Perceptions across Stakeholders

Background/Aims: Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Optimal management is patient- and family-centered and delivered by interdisciplinary teams. The present pilot study elicits concerns held by important stakeholders on issues affecting young patients with DSD and their families. Methods: Content from focus groups with expert clinicians (pediatric urologists (n = 7), pediatric endocrinologists (n = 10), mental health professionals (n = 4), DSD patient advocates (n = 4), and interviews with parents of DSD-affected children (newborn to 6 years; n = 11) was coded and content-analyzed to identify health-related quality of life issues. Results: Key stressors varied across stakeholder groups. In general, family-centered issues were noted more than child-centered. In the child-centered domain, providers worried more about physical functioning; family and advocates emphasized gender concerns and body image. In the family-centered domain, parental concerns about medication management outweighed those of providers. Advocates reported more stressors regarding communication/information than other stakeholders. Conclusion: Variability exists across stakeholder groups in the key concerns affecting young children/families with DSD. Interdisciplinary DSD healthcare team development should account for varying perspectives when counseling families and planning treatment.

How do doctors refer to patient-reported outcome measures (PROMS) in oncology consultations?

We conducted a secondary qualitative analysis of consultations between oncologists and their patients to explore how patient-reported outcome measures (PROMs) data were referred to in the process of (1) eliciting and exploring patients' concerns; (2) making decisions about supportive treatment and (3) making decisions about chemotherapy and other systemic treatments. We purposively sampled audio recordings of 18 consultations from the intervention arm and 4 from the attention control arm of a previous UK randomised controlled trial of the feedback of PROMs data to doctors (Velikova et al. in J Clin Oncol 22(4):714-724 [1]). We used a combination of content and conversation analysis to examine how opportunities for discussion of health-related quality of life issues are opened up or closed down within the consultation and explore why this may or may not lead to changes in patient management. Explicit reference to the PROMs data provided an opportunity for the patient to clarify and further elaborate on the side effects of chemotherapy. High scores on the PROMs data were not explored further if the patient indicated they were not a problem or were not related to the cancer or chemotherapy. Symptomatic treatment was more often offered for problems like nausea, constipation, pain and depression but much less so for fatigue. Doctors discussed fatigue by providing a cause for the fatigue (e.g. the chemotherapy), presenting this as 'something to be expected', minimising its impact or moving on to another topic. Chemotherapy regimens were not changed on the basis of the PROMs data alone, but PROMs data were sometimes used to legitimise changes. Explicit mention of PROMs data in the consultation may strengthen opportunities for patients to elaborate on their problems, but doctors may not always know how to do this. Our findings have informed the development of a training package to enable doctors to optimise their use of PROMs data within the consultation.

Health and quality of life (QOL) issues in four groups of lung cancer patients: Low-dose computed tomography (LDCT) screened, chest x-ray detected, incidentally found, and routinely diagnosed.

1610 Background: Low dose computed tomography (LDCT) scans have reduced lung cancer deaths by 20.3% in high risk populations, although there is an unknown balance between the benefits and harms of LDCT scans as a screening tool. Our purpose was to compare health-related QOL issues among lung cancer patients who were initially detected by LDCT scans; 4 comparison groups included: lung cancer diagnosed by a screening chest X-ray, as an incidental finding from procedures taken for other medical reasons, or based on symptoms indicative for lung cancer and routinely diagnosed, and individuals who were LDCT screened but found no lung cancer (controls who participated in Mayo’s lung cancer CT screening trial). Methods: A total of 1,658 lung cancer patients (cared at Mayo Clinic) in the 4 groups (37, 151, 389, and 1081 respectively) and 488 controls were compared on following patient-reported outcomes (collected via validated tools): overall QOL, four symptoms (cough, pain, dyspnea, fatigue), mental/ physical/ emotional/ social/ spiritual QOL, and other concerns (e.g., family/ friends/ financial/ legal). A clinically significant deficit was defined as at least 10-points in difference (or <50 points) on a 0-100 scale. The rates of deficits were compared via Fisher’s exact tests and average QOL values via Kruskal-Wallis tests. Results: Overall QOL and individual symptoms were significantly worse (p<0.05) in all lung cancer groups than in controls, except for pain. LDCT-screened patients reported the greatest deficit among the 4 lung cancer groups in physical (41%), emotional (24%), social (38%), and spiritual QOL (24%); whereas chest X-ray detected patients had the least deficit in overall QOL (22%) and pain (32%). All 4 lung cancer groups experienced much worse fatigue (52-64%) than the controls (32%). Conclusions: Our preliminary results suggest that LDCT-screening detected lung cancer patients reported a different QOL profile from other lung cancer patients and non-lung cancer controls. The clinical course, smoking behavior, and QOL related health issues associated with LDCT screening for lung cancer warrant thorough investigation.

Women on hemodialysis have lower self-reported health-related quality of life scores but better survival than men

Hemodialysis patients suffer from poor quality of life and survival. A retrospective cohort study was performed to examine the sex differences in self-reported quality of life and mortality in a Taiwanese hemodialysis cohort. A total of 816 stable hemodialysis patients were included. Patients completed two questionnaires: the 36-item Short Form Health Survey Questionnaire (SF-36, Taiwan Standard Version 1.0) to assess health-related quality of life (HRQoL) and the Beck Depression Inventory (BDI, Chinese Version) to assess depressive mood. Mortality outcomes were recorded for a seven-year follow-up period. After adjustment for confounding factors, women had significantly higher BDI scores (P=.003), lower physical functioning (P<.001), bodily pain (P<.001), mental health (P=0007), and physical component scale (PCS) scores (P<.001). There were 284 deaths recorded. In the Cox-proportional hazard model, women had significantly lower mortality than men (P<.001). Women on hemodialysis had more depression-related symptoms and poor self-reported HRQoL, but better survival than men. The sex difference in psychological and HRQoL issues deserves greater concern because this relates to clinical care and further study.

A new quality of life scale for teenagers with food hypersensitivity

A disease-specific health-related quality of life (HRQL) scale enables the impact of current and new interventions on the HRQL of teenagers with food hypersensitivity (FHS) to be evaluated. No such scale exists for teenagers with FHS living in the U.K. This research aimed to develop and validate a disease-specific HRQL scale for this group, thus facilitating HRQL measurement in this population. A preliminary 51-item questionnaire was generated from interviews with 21 teenagers with FHS, the coverage and acceptability of which was refined in pre- and pilot testing (N = 102). On the basis of the field test data (N = 299), principal components analysis identified those items best measuring HRQL. The final 34-item You and Your Food Allergy scale covered five domains: social well-being and independence, support, day-to-day activities, family relations and emotional well-being. The whole scale displayed excellent internal consistency (Cronbach's α = 0.92) and test-retest reliability (ICC = 0.87). The scale correlated as hypothesised with a generic HRQL scale (PedsQL) and discriminated by disease severity, providing evidence for its construct validity. The You and Your Food Allergy scale is the first HRQL scale to have been developed and validated with U.K. teenagers with FHS. Subject to further evaluation of its psychometric properties, its development has important applications in future research into the HRQL of teenagers with FHS. Short and easy-to-complete, the scale has been designed to appeal to teenagers and is likely to be useful to facilitate discussion of HRQL issues.

A Preliminary Study on the Relationships between Global Health/Quality of Life and Specific Head and Neck Cancer Quality of Life Domains in Puerto Rico

Health-related quality of life (HRQOL) is an important treatment outcome for head and neck cancer (HNC) patients. By ascertaining the most important HNC HRQOL issues, research and practice can be directed toward enhancing patient QOL. A cross-sectional study of 46 ENT clinic HNC patients in Puerto Rico (PR) was completed. The European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 (general QOL), and the QLQ-H&N35 (HNC QOL) instruments were administered. Correlations and multivariable regressions were separately conducted for QLQ-H&N35 variables on the three QLQ-C30 outcome variables: overall health, overall QOL, and the global health/QOL domain. Correlation findings included statistically significant negative correlations between the three QLQ-C30 outcome variables and the QLQ-H&N35 variables pain, swallowing, social eating, social contact, and sexuality. Multivariable linear regression identified statistically significant inverse indicators of the outcomes: (1) "lessening of sexuality" with "overall health" (p= 0.02), (2) "problem with social eating" (p= 0.023), "taking pain killers" (p= 0.025), and "problem with social contact" (p= 0.035) with "overall QOL," and (3) "problems with social eating" (p < 0.009) and "taking pain killers" (p= 0.016) with the "global health/QOL" domain. We conclude that problems with pain, social eating, social interactions, and loss of sexuality are critical indicators of degraded HRQOL in HNC patients living in Puerto Rico. Our results add to the overall knowledge base regarding QOL among HNC patients. The promise of improved QOL for the HNC patient is attainable through additional research in conjunction with advances in clinical treatments and patient management protocols.

International Development of An EORTC Measure to Assess Patient-Reported Quality of Life (QoL) and Symptoms in Chronic Myeloid Leukemia (CML)

Abstract 3132Background The treatment of chronic myeloid leukemia (CML) has changed dramatically over the last decade with the advent of targeted therapies. Health related quality of life (HRQOL) is now an important treatment otucome for this population but there is lack of internationally validated HRQOL measures for CML patients.Aims The main objective of this paper is to present results of the cross cultural initial development of an EORTC HRQOL questionnaire for patients with CML.Methods The development is following the EORTC Quality of Life Group (QLG) module development guidelines (consisting of 4 phases) as well as the Food and Drug Administration (FDA) international recommendations for developing patient-reported outcome instruments. According to phases I and II of EORTC QLG module development, an extensive literature search on potentially relevant HRQOL issues for CML patients was conducted. In addition, patient and CML expert evaluations were performed on an international basis. For the purpose of this project, and in an effort to further strength content validity of the questionnaire from the very beginning, a CML Patient advocacy group was also involved.Results More than 600 CML related articles were scrutinized and an initial list of 74 issues, including potentially relevant HRQOL aspects for CML patients, was drafted. Overall 236 CML patients provided their input on the initial list of items. 137 CML patients were interviewed in the following countries: (Italy: 67; Germany: 45; Taiwan: 10; Iraq: 8 and Greece: 7) and 99 patients provided their input through a national patient advocacy website. The data stemming from this latter group were used for supportive analyses only. In addition 59 experts (mainly physicians) were also interviewed on possible relevance of issues. At the time of interviews patients were receiving the following treatments: Imatinib (58%), Nilotinib (25%), Dasatinib (13%). Fifty-two percent were in treatment for more than 5 years ensuring that our sample included a reasonable percentage of long-term cancer survivors. Based on analysis of mean scores, prevalence ratio, range and priority ratings given by patients and experts the initial list of 74 issues was reduced to 30 items grouped in the following scales: symptoms, psychosocial aspects, adherence to therapy, infertility, body image and satisfaction with care.Conclusions A list of 30 items has been derived based on this initial development process (phase I and II according to the EORTC QLG guidelines) and this is now being further tested in a larger CML sample. Eventually, we expect this EORTC QoL-CML questionnaire to be used as a key outcome measure in future clinical trials of novel therapies for CML patients. Disclosures:No relevant conflicts of interest to declare.

Traumatic Brain Injury Patient-Reported Outcome Measure: Identification of Health-Related Quality-of-Life Issues Relevant to Individuals With Traumatic Brain Injury

Carlozzi NE, Tulsky DS, Kisala PA. Traumatic brain injury patient-reported outcome measure: identification of health-related quality-of-life issues relevant to individuals with traumatic brain injury. This 2-part qualitative study explored health-related quality of life (HRQOL) in individuals with traumatic brain injury (TBI). A community-based participatory action research design was used, which emphasizes collaboration between researchers and individuals with disabilities to ensure that results are relevant for individuals with TBI. In study 1, community members (N=20) with TBI served as “experts” during 1-on-1 semistructured interviews, reviewing current HRQOL items and identifying HRQOL issues commonly experienced by individuals with TBI. Each participant identified at least 31 issues, with most generating more than 90 responses, highlighting the multifaceted nature of HRQOL in TBI. Study 2 consisted of 7 patient/consumer groups (33 individuals with TBI), 4 caregiver groups (17 caregivers), and 2 provider groups (15 providers). Qualitative analysis of patient focus groups indicated that 48% of focus group comments were related to emotional issues; 23%, to social functioning; 14%, to physical functioning; 11%, to cognition; and 7%, to personality changes (caregiver and provider focus group analysis indicated identical patterns of findings). In addition, both studies evaluated the applicability in TBI of generic items developed by the Patient-Reported Outcomes Measurement Information System and the Neurology Quality of Life Measurement initiative. Findings suggest that although there is some overlap between current generic measures of HRQOL and concepts reported by individuals with TBI, these generic measures do not capture the full complexity of HRQOL in TBI. TBI-targeted item banks are needed to ensure sensitive assessment of HRQOL in TBI.

Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies.

Purpose: The occurrence of late effects, combined with traditional growth and developmental issues, can significantly affect the health-related quality of life (HRQOL) of young adult survivors of childhood cancer (YASCC). Limited HRQOL measurement tools have been developed or validated for YASCC. The purpose of this study was to identify the domains of HRQOL that are unique to YASCC by conducting a systematic review of qualitative studies. Specifically, we compared the findings to the classical framework of HRQOL that was developed for survivors of adult-onset cancer and identified specific domains not being assessed in existing HRQOL instruments for YASCC. Methods: We searched qualitative studies published in peer-reviewed journals from 2000 to 2010 in the PsychINFO, PubMed, and EBSCOhost databases. A set of keywords and inclusion/exclusion criteria were utilized to identify eligible studies with a focus on survivorship and HRQOL issues of YASCC. Results: Sixteen studies met the inclusion/exclusion criteria and were investigated in this study. Six important domains of HRQOL were identified (physical, social, psychological, spiritual, fertility/sexual, resilience, and body appearance) with several sub-domains. Conclusion: Use of the classical HRQOL framework and existing instruments is not comprehensive enough for YASCC. Adding unique domains to the classical framework and existing instruments will make them valuable tools for measuring the HRQOL of YASCC and increase health professionals' ability to identify if and when psychosocial services are needed for this unique population.

An Overview of Foot Infections in Diabetes

Patients with diabetes are prone to ulcerations of the lower extremities, frequently complicated by infection, and are then reliant upon their caregivers for preservation of their limbs without the dreaded outcome of amputation. The enormous tolls of foot infections in diabetes, in terms of both health-related quality of life issues and associated economic burdens, have only been fully realized within the last few decades, and it is anticipated that these burdens will only increase over time. Early and appropriate antibiotic treatment targeting the most likely etiologic pathogens is a cornerstone of management of foot infections in diabetes, but these decisions are now complicated by the emergence of resistant organisms, particularly methicillin-resistant Staphylococcus aureus and multidrug-resistant Gram-negative species. This review will examine the impact of foot infections in diabetes and the overall care and management of the diabetes patient with foot infection, including the potential value of emerging antibiotic therapies within the milieu of antibiotic resistance.

Cohort Profile: The KPSC Children's Health Study, a population-based study of 920 000 children and adolescents in southern California

Increasing concerns focus on the effects ofobesity on morbidity and health-related quality of lifeissues, particularly in cases of paediatric onset ofobesity. However, the economic burden and long-termhealth consequences of extreme childhood obesity arelargely unknown and ill-defined because there havebeen no large prospective epidemiological studies thatincluded enough extremely obese children to deliverstable estimates of the health consequences.To address current gaps in the knowledge aboutthe health consequences of extreme childhood obes-ity, we created a contemporary cohort study of chil-dren and adolescents 2–19 years of age in southernCalifornia who are actively enrolled in a large, pre-paid, integrated managed healthcare system. TheKaiser Permanente Southern California (KPSC)Children’s Health Study is an ongoing cohort studythat currently includes 4920000 children and adoles-cents and continues to enrol new patients joiningthe health plan. The study is currently supported bya grant from the National Institute of Diabetes andDigestive and Kidney Disorders (R21DK085395;Principal Investigator: Koebnick) and by KaiserPermanente Direct Community Benefit Funds.Since 2007, new screening guidelines for paediatricweight management have been implemented at KPSCoffering a unique opportunity to fill current know-ledge gaps regarding the disease burden associatedwith childhood obesity. These guidelines include regu-lar screening of blood lipids, liver enzymes and mark-ers of glucose metabolism recommended for childrenat or above the 95th percentile of BMI-for-age accord-ing to the 2000 sex-specific Centers for DiseaseControl and Prevention (CDC) growth charts

Assessing the Acceptability and Usability of an Interactive Serious Game in Aiding Treatment Decisions for Patients with Localized Prostate Cancer

BackgroundMen diagnosed with localized prostate cancer face a potentially life-altering treatment decision that can be overwhelming. Enhancing patient knowledge through education can significantly reduce feelings of uncertainty while simultaneously increasing confidence in decision making. Serious games have been shown in other populations to increase health knowledge and assist with the health decision-making process. We developed an interactive serious game, Time After Time, which translates evidence-based treatment outcome data into an accessible and understandable format that men can utilize in their prostate cancer treatment decision-making process. The game specifically aims to raise men’s awareness and understanding of the impact of health-related quality of life issues associated with the major treatment options and to enrich their conversations with their health care providers.ObjectiveThis study determined the acceptability and usability of the alpha version of Time After Time, an interactive decision aid for men diagnosed with localized prostate cancer, in order to inform future iterations of the serious game.MethodsThe study employed a mixed methods approach to assess the acceptability and usability of the Time After Time serious game using qualitative focus groups and a quantitative Likert scale survey.ResultsA total of 13 men who had already completed treatment for localized prostate cancer completed the survey and participated in focus group meetings. The majority of the study participants rated Time After Time as an appropriate decision tool for localized prostate cancer and verified that it meets its goals of increasing focus on side effects and generating questions for the patient’s health care team. However, participants also expressed concerns about game usability and the diversity of information covered regarding treatment options and potential treatment outcomes.ConclusionsSerious games are a promising approach to health education and decision support for older men. Participants were receptive to the idea of a serious game as a decision aid in localized prostate cancer. However, usability issues are a major concern for this demographic, as is clarity and transparency of data sources.

Monitoring health-related quality of life in paediatric practice: development of an innovative web-based application

BackgroundHealth Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice. These Patient Reported Outcomes (PROs) are provided to the paediatrician to facilitate communication with patients during a consultation. The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice.MethodsCurrently, the use of PROs in daily clinical practice is very time consuming and often has logistical problems. The use of a web-based programme can overcome these problems and contributes to an improved use of PROs in clinical practice. We therefore developed an easily accessible website (KLIK) for outpatient treatment and a training programme for paediatricians to maximize the effectiveness and the practical use of PROs (KLIK PROfile).ResultsThe KLIK study was launched in August 2008 to evaluate the use of the KLIK PROfile in daily clinical practice. The KLIK study evaluates whether feedback from HRQOL data could influence patient satisfaction with the consultation, the advice given, the type of referrals and topics discussed. In this multicentre study, a control group (without the use of the KLIK PROfile) is compared to an intervention group (with the use of the KLIK PROfile). A sequential cohort design is chosen to avoid contamination between the study groups.ConclusionsBased on the positive experiences with the use of the KLIK PROfile acquired during the study we conclude that the KLIK PROfile may contribute to systematically monitor and discuss HRQOL issues during consultations. The next steps will be a comprehensive evaluation of the KLIK study data and the implementation of the KLIK PROfile in daily clinical practice in different patient groups.

Improving Quality of Life of Children With Oral Clefts

Quality of life is increasingly recognized as an important health outcome in people with surgically treatable conditions. However, few data are available on children with oral clefts. Focus groups provide a rich exploratory approach to understanding health-related quality of life issues. We report findings from 2 focus groups of parents of children with oral clefts (cleft lip, cleft palate, and cleft lip and palate) in Utah and Idaho. Participants were guided into a discussion of issues and drivers of quality of life, from diagnosis through treatment to school entry. Parents identified crucial factors including the early need for support (including parent support groups), for credible information, and for advice for daily life. Surgery was a major factor affecting satisfaction and quality of life, and satisfaction depended not only on surgical results but importantly on communication, empathy, expectations, postsurgical care, and discharge management. Many parents underscored as critically important the preparation and the postsurgery experience, rather than the surgery itself. Parents also identified crucial milestones, including birth, diagnosis, the first surgery, and school entry. Combining these crucial issues with a life-stage approach provides a framework for intervention that focuses on drivers of quality of life at selected milestones in the life of children with oral clefts.

O-92 A multi centre prospective longitudinal study evaluating health related quality of life after immediate Latissimus dorsi (LD) breast reconstruction

Introduction: NICE recommends that the majority of women should be offered immediate breast reconstruction with its potential to improve health related quality of life (HRQL). There is conflicting evidence with a lack of ‘hard’data to best inform clinicians and their patients. Our aim was to evaluate the effects of implant-assisted LD (LDI) versus autologous LD (ALD) breast reconstruction on HRQL over 12 months. Methods: A prospective longitudinal multicentre study commenced in early 2007. Patient reported outcome measures using the EORTC C30 (general HRQL), BR-23 (breast + arm symptoms), Body Image Scale (BIS) and HADS, were completed pre-operatively and at 3, and 12 months after surgery. Longitudinal analyses tested the effects of treatment variables, baseline HRQL, age and time on QL domains (3–12 months). Significance was set at p = 0.01. Results: One hundred and seventy one patients (93 ALD, 78 LDI) were recruited. There were no significant differences in HRQL domains between LDI and ALD (±RT). Chemotherapy patients reported poorer overall HRQL (p < 0.001), poorer role (p = 0.003) and social (p = 0.01) functioning, and greater fatigue (p = 0.002) and depression (p = 0.01). Older patients had fewer HRQL issues (p = 0.01). Significant improvements over time were seen for overall HRQL and other domains (p < 0.001). There were no significant differences between LDI and ALD for patient satisfaction with surgical outcome. Good satisfaction with overall breast appearance and surgical outcome was significantly associated with fewer body image concerns. Conclusion: There is an important need for cumulative clinical evidence in this field on which to base patient informed consent and clinical recommendations.

Development of the European Organisation for Research and Treatment of Cancer quality of life questionnaire module for older people with cancer: The EORTC QLQ-ELD15

Background and aim There is a lack of instruments that focus on the specific health-related quality of life (HRQOL) issues that affect older people with cancer. The aim of this study was to develop a HRQOL questionnaire module to supplement the European Organisation for Research and Treatment of Cancer (EORTC) core questionnaire, the EORTC QLQ-C30 for older (>70 years) patients with cancer. Methods Phases 1–3 were conducted in seven countries following modified EORTC Quality of Life Group guidelines for module development. Phase 1: potentially relevant issues were identified by a systematic literature review, a questionnaire survey of 17 multi-disciplinary health professionals and two rounds of qualitative interviews. The first round included 9 patients aged >70. The second round was a comparative series of interviews with 49 patients >70 years with a range of cancer diagnoses and 40 patients aged 50–69 years matched for gender and disease site. In Phase 2 the issues were formulated into a long provisional item list. This was administered in Phase 3 together with the QLQ-C30 to two further groups of cancer patients aged >70 ( n = 97) or 50–69 years ( n = 85) to determine the importance, relevance and acceptability of each item. Redundant and duplicate items were removed; issues specific to the older group were selected for the final questionnaire. Results In Phase 1, 75 issues were identified. These were reduced in Phase 2 to create a 45 item provisional list. Phase 3 testing of the provisional list led to the selection of 15 items with good range of response, high scores of importance and relevance in the older patients. This resulted in the EORTC QLQ-ELD15, containing five conceptually coherent scales (functional independence, relationships with family and friends, worries about the future, autonomy and burden of illness). Conclusion The EORTC QLQ-ELD15 in combination with the EORTC QLQ-C30 is ready for large-scale validation studies, and will assess HRQOL issues of most relevance and concern for older people with cancer across a wide range of cancer sites and treatment stages.

S1081 Patient Reported Outcomes in Adults With Eosinophilic Esophagitis

Background: Gastrointestinal illnesses are often associated with decreased health related quality of life (HRQOL). Eosinophilic Esophagitis (EoE) has emerged as an important cause of dysphagia and food impaction. The patient's perspective on the disease has received little attention. The aim of this prospective study was to characterize HRQOL as it relates to patient reported outcomes in EoE. Methods: 23 adult patients (pts) with a diagnosis of EoE participated. Demographics, a dysphagia symptom score, SF-12v2 PCS and MCS, and an audio-recorded, 22-item structured interview were collected. Interview data were reviewed to identify common domains relating to HRQOL. Results: Mean (±SD) age was 39±2.5 years and 70% of subjects were male. Mean time since diagnosis was 1.5±0.4 years with symptomonset 11.5±2.5 years prior to diagnosis. 78%of patients rated dysphagia asmoderate or severe. Dysphagia frequency was 4±1.2 (weekly episodes). EoE pts had significantly higher PCS scores than norms for allergies, stomach disease, and diabetes (p<0.01). No differences were found when compared to healthy norms. EoE pts did not differ from illness groups for MCS, though were lower than healthy norms (p=.007). Interview data yielded domains related to HRQOL in EoE. 1) Fear/Anxiety/Frustration. Patients felt frustrated with the failure of past medical professionals to recognize their disease, and 74% felt relieved when diagnosed with EoE. During episodes of dysphagia, 57% expressed feelings of fear or panic, and 30% feared future episodes or episodes that would require ER visits. 2) Impact on Functioning. EoE caused public embarrassment or distress in 65% of patients, and resulted in modified eating habits in 87% of patients. 3) Feelings about the Disease. 26% of patients had concerns regarding the long-term consequences of the disease and the lack of research about the disease. Furthermore, 52% expressed fear that the disease would progress, and 48% were wary of medication side effects.Conclusions:Compared with other chronic illnesses, EoE pts reported significantly better physical health and similar mental health function. Exploratory interviews with adult EoE patients revealed that the disease impacts a number of important domains related to HRQOL including frustration, embarrassment, and fears about disease outcomes. Based on these results, a preliminary questionnaire is being designed to better evaluate disease-specific EoE HRQOL issues that may be missed by standardized measures of general health.

Health-Related Quality of Life in Patients with Atrial Fibrillation Undergoing Pulmonary Vein Isolation, Before and After Treatment

Atrial fibrillation (AF) is the most common arrhythmia and many AF patients experience a significantly impaired health-related quality of life (HRQOL). AF is also associated with a high risk of stroke and death. Many pharmacologic treatments for AF are ineffective and may have adverse effects. New methods, such as pulmonary vein isolation (PVI), have been developed to treat AF. The aim of this study was to investigate the HRQOL issues in severe symptomatic AF patients before and after pulmonary vein isolation. Forty patients treated with PVI were included of which 36 concluded the study with the self-reported HRQOL questionnaires before and once after PVI. A standardized control group was used. Compared to the control group the HRQOL before PVI was significantly lower in all domains except for bodily pain. The preoperative scores were compared with the scores obtained at the follow-up. All subscales of the SF-36 significantly improved after the PVI except for bodily pain, which remained unaltered. HRQOL is improved in AF patients with severe symptoms after PVI intervention.

Health-Related Quality of Life Issues in Gastroesophageal Reflux Disease

Several studies have reported significant Health-Related Quality of life (HRQOL) impairment in gastroesophageal reflux disease (GERD) patients compared with the general population. The evaluation of quality of life is important as a parameter for the treatment. Because GERD has diverse symptoms such as esophageal and extraesophageal syndromes, HRQOL of GERD should be determined by both disease and non-disease related factors. The purpose is to overview the HRQOL instruments used in the evaluation of GERD, published reports regarding HRQOL in GERD, and the effects of medical treatments on GERD.

Functional Outcome in the Neurosurgical Patient and Its Impact on Quality of Life

Outcomes research has become an integral part of most clinical studies today. Extent of resection, increased median survival, and "time to progression" are no longer the only important end points in need of assessment. Identifying the long-term adverse effects of treatment has become increasingly important as patients try to resume previous activities and an independent lifestyle. The measurement of functional states and health-related quality of life issues are at the forefront of medicine and have become necessary measures of functional outcome following the treatment of a variety of medical and surgical disorders. In this article, we review the most recent studies on the functional outcome of patients undergoing neurological surgeries and its impact on quality of life.