Influence Health-related Quality Of Life Research Articles

Physical Activity Influences Health-Related Quality of Life in Adults with Juvenile Idiopathic Arthritis.

This cross-sectional study aimed to evaluate the impact of physical activity and physical fitness on the health-related quality of life (HQoL) of adult patients with Juvenile Idiopathic Arthritis (JIA). Fifty-nine JIA patients and sixty healthy individuals participated in this study. All individuals had the following evaluations performed: body composition (electrical bioimpedance), physical fitness (6 min walk test (6MWT)), physical activity level (International Physical Activity Questionnaire (IPAQ)), and HQoL (Quality of Life Questionnaire in relation to Health-Short Form (SF36)). Thirty-nine (66%) JIA patients were considered sedentary compared with 15 (25%) in the control group (p < 0.01). JIA patients had a lower HQoL compared with the control group in all variables studied (p < 0.05). JIA patients who were very physically active had better HQoL conditions in the categories of functional capacity (p = 0.001), limitations by physical aspects (p = 0.003), and emotional aspects (p = 0.002) compared with sedentary patients. JIA patients had more cardiovascular abnormalities and walked shorter distances compared with healthy controls in the 6MWT. In conclusion, we observed that HQoL was reduced in adults with JIA. A high percentage of JIA patients were sedentary with lower physical fitness, but physically active patients had a better HQoL than sedentary patients. The duration of physical activity, rather than intensity, influenced the mental aspects of HQoL.

Syrian Refugee Youth Resettled in Norway: Mechanisms of Resilience Influencing Health-Related Quality of Life and Mental Distress.

Background: The importance of resilience factors in the positive adaptation of refugee youth is widely recognised. However, their actual mechanism of impact remains under-researched. The aim of this study was therefore to explore protective and promotive resilience mechanisms to inform future interventions and policy. Promotive resilience is seen as a direct main effect and protective resilience as a moderating effect.Methods: This was a cross-sectional study of Syrian youth recently resettled in Norway, aged 13–24 years. Regression and moderation analyses were used to explore different interactions, including moderated mediation using the PROCESS macro for SPSS.Result: A direct main effect of promotive resilience was found for health-related quality of life (HRQoL) and general mental distress, but not for post-traumatic stress disorder (PTSD). No moderating effects of protective resilience were found. Post-migration stressors mediated the effects of potentially traumatic events (PTE) from war and flight, and this indirect effect was present at all levels of resilience.Conclusion: Despite high risk exposure and mental distress, resilience was also high. Broad resilience interventions targeting multiple factors would likely benefit the group, but these should include both individual assets and building supportive environments. Additionally, reducing current stress and providing treatment for those in need could enable recovery and increase the efficacy of resilience factors already present.

Neural networks associated with quality of life in patients with Parkinson's disease

IntroductionThe neural underpinnings of health-related quality of life in Parkinson's disease remain unclear. This study was conducted to unravel which motor and non-motor symptoms in Parkinson's disease influence health-related quality of life and reveal neural networks most likely linked to it. MethodsComprehensive clinical assessments were conducted for 247 Parkinson's disease patients and image analyses were performed for 181 patients. Clinical scores commonly used to assess various symptoms related to health-related quality of life were investigated. Factor and resting-state functional magnetic resonance imaging analyses were reviewed to reveal health-related quality of life-associated brain networks. ResultsThe Spearman's rank correlation coefficient for the Parkinson's disease Questionnaire-39 summary index was high in the Activities-specific Balance Confidence Scale, Movement Disorder Society-Sponsored Revision of the Unified Parkinson's Disease Rating Scale part 2, Freezing of Gait Questionnaire, and Self-reported Autonomic Symptoms in Parkinson's disease. Multiple regression and Random Forest regression analyses indicated that health-related quality of life-associated factors were Movement Disorder Society-Sponsored Revision of the Unified Parkinson's Disease Rating Scale part 1, Depression Rating Scales, and the above-mentioned scales. The resting-state functional magnetic resonance imaging analysis revealed decreased functional connectivity between the anterior cingulate cortex and right temporo-parietal junction as health-related quality of life worsened. ConclusionFear of falling, daily living activities, gait freezing, and autonomic dysfunction have notable effects on health-related quality of life in Parkinson's disease. Brain networks consisting of the anterior cingulate cortex and temporo-parietal junction may be associated with the emotion-related and social factors of health-related quality of life in Parkinson's disease.

Health-related quality of life in refugee youth and the mediating role of mental distress and post-migration stressors

PurposeThe aim of this study is to explore how potentially traumatic events (PTEs) from war and flight influence health-related quality of life (HRQoL) in young refugees after recent resettlement. In a model based on earlier theory, we tested if post-migration stressors and mental distress mediated the effect of PTEs on HRQoL, individually and in serial. We also explored how different types of post-migration stressors influenced different dimensions of HRQoL.MethodsThis study used a cross-sectional design where 160 Syrian youth recently resettled in Norway completed questionnaires at school between May and December 2018. Correlations between types of post-migration stressors and dimensions of HRQoL were explored and a serial multiple mediator model was tested. Models were adjusted for age and gender, using two types of mental distress; post-traumatic stress disorder (PTSD) and general mental distress.ResultsHigher levels of PTEs reduced experienced HRQoL, but this direct effect was mediated by post-migration stressors alone and in serial with mental distress. Despite high levels of mental distress, this did not affect HRQoL independently, only in serial mediation with increased post-migration stressors. Economic concerns and discrimination were types of post-migration stressors affecting several dimensions of HRQoL.ConclusionQuality of life in refugee is affected by past events from war, stressors in current resettlement and elevated mental distress through complex interrelations. The study reiterates the importance of considering structural and everyday post-migration stressors in policy and intervention to improve the health and wellbeing of refugee youth.

Unmet needs influence health-related quality of life in people with multiple sclerosis

BackgroundPeople with MS are a heterogeneous population with varying difficulties and needs that are influenced by the individual experience of the disease, symptoms and disease course. The aim of the present study was to identify factors that influence health-related quality of life in a sample of subjects with MS, specifically health and social care-related needs and demographic and disease characteristics. MethodsIndividuals with a definite diagnosis of MS were identified through MS out-patient clinics and local branches of the Italian MS Society. The EQ-5D-3L utility index was used to describe health profiles and as an overall measure of perceived HRQoL. The number of unmet health and social care-related needs was used to describe the impact of unmet needs on HRQoL. Multiple regression analyses were performed using a hierarchical approach. ResultsData was analyzed from 1013 subjects. Overall, 83% of subjects reported at least one health or social care-related need as being unmet and subjects with a higher number of unmet needs had lower HRQoL (p < 0.001). The number of unmet needs was entered at the first step with a statistically significant effect (Cox-Snell R2 0.15, BIC 870.9, AIC 851.2). Clinical variables, included in the second step, contributed significantly to explaining the variability between models (Cox-Snell R2 0.43, BIC 481.0, AIC 446.6), and the addition of socio-demographic factors further accounted for variability (Cox-Snell R2, 0.46, BIC 461.0, AIC 402.0). ConclusionsThe study demonstrated that a higher number of both health and social care-related unmet needs predicted lower HRQoL. The health profile of the sample identified all domains of the EQ-5D-3L as being important in determining HRQoL. Data confirms that unmet needs alone are significantly related to reduced HRQoL, although the multifactorial and complex nature of MS makes it a challenge to identify the combination of aspects that fully predict variability in quality of life.

Previous Concussion History Influences Health-related Quality Of Life Among Collegiate Student-athletes: Baseline Findings From The Active Rehab Study

Prior concussion history is posited to influence many outcomes. Understanding how concussion history affects quality of life may identify student-athletes needing intervention and those predisposed to other conditions. PURPOSE: To examine how prior concussion history influences college athletes’ pre-season baseline health-related quality life (HRQOL). METHODS: Student-athletes (n = 1599) from six Canadian and US college institutions and 24 college sports, completed a comprehensive concussion baseline assessment including an HRQOL evaluation (PROMIS-29, Neuro-QOL Fatigue, and Neuro-QOL Cognition Scales). The primary predictor was concussion history and covariates included age, sex, BMI, and contact sport participation. Primary outcomes were Anxiety, Physical Function, Depression, Sleep Disturbance, Social Role/Activities, Pain Interference, Pain Intensity, Cognition, and Neuro-related Fatigue raw scores. Linear regression models clustered on study site using generalized estimating equations examined the association between concussion history and HRQOL outcomes. RESULTS: Analysis was limited to 1509 (94%) participants with complete outcome and covariate data [538 females (35.6%); median age = 19 years (range: 18-27); 553 (36.7%) with 1+ prior concussions); 1154 (76.5%) played a contact sport]. Concussion history, adjusted for age, sex, BMI, and contact sport participation, were associated with greater anxiety, sleep disturbance, depressive feelings, fatigue, and worse cognition function. However, these differences were mostly minor. Clinically meaningful mean differences (MD) suggest those with multiple concussions report worse cognitive function (MD=-1.2; 95%CI: -2.4, -0.1 for 3+ vs 0 concussions; MD=-1.1, 95% CI:-2.3, 0.1 for 2 vs. 0 concussions) and greater neuro-related fatigue (MD=1.3, 95% CI: -0.1, 2.7 for 3+ vs 0 concussions; MD=0.9, 95% CI: 0.1, 1.7 for 2 vs 0 concussions). CONCLUSIONS: After controlling for covariates, these data suggest that following primary recovery, those with prior concussions may exhibit increased cognitive and fatigue related complaints. These residual effects may confound incident concussion assessments, particularly when pre-season baseline measures are not available. Supported in part by a grant from the National Football League

Relationships between body image, sexual dysfunction, and health-related quality of life among middle-aged women: A cross-sectional study

ObjectivesTo examine whether body image, sexual function, and relationship with a partner influence health-related quality of life (HRQoL) among middle-aged women, as well as to identify the association with menopausal symptoms. Main outcome measuresPhysical component summary and mental component summary of HRQoL. MethodsThis was an analysis of 1026 women (2013–2014); data regarding demographic characteristics, sexual function, body image, relationship with partner, menopausal symptoms and HRQoL during middle age were collected. HRQoL, sexual function, body image, relationship with partner, and menopausal symptoms were measured using the Medical Outcomes Study SF-12, Female Sexual Function Index (FSFI), Multidimensional Body-Self Relations Questionnaire-Appearance Scale, the Relationship Assessment Scale, and the Greene Climacteric Scale, respectively. A multivariate regression was used to examine factors influencing HRQoL. ResultsAfter adjusting for covariates, significant factors predicting the physical component summary (PCS) of HRQoL among middle-aged women included the orgasm domain of the FSFI (β = 0.69; p = 0.023), appearance evaluation (β = 0.93; p = 0.037), and menopausal symptoms (β = −0.25; p < 0.001). The factors predicting the mental component summary (MCS) of HRQoL included the satisfaction domain of the FSFI (β = 0.70; p = 0.014), appearance evaluation (β = 2.09; p < 0.001), self-classified weight (β = 1.21; p < 0.001), relationship with partner (β = 0.16; p = 0.034), and menopausal symptoms (β = −0.36; p < 0.001). ConclusionThe results indicated that negative appearance evaluation and menopausal symptoms predicted poor HRQoL among middle-aged women. Higher frequency of orgasm predicted better PCS; sexual satisfaction and satisfaction with relationship with a partner predicted better MCS of HRQoL.

Health-related quality of life in adult heart-transplant recipients-asystematic review.

Health-related quality of life is amultidimensional concept to assess the impact of medical interventions from an individual perspective. This concept is important to evaluate benefits of heart transplantation. This systematic review was conducted to determine (1)posttransplant health-related quality of life in heart transplantation patients and (2)influencing factors of health-related quality of life. Asystematic review of cross-sectional, prospective and mixed methods studies published from November 2007 to November 2017 was conducted on PsycINFO, PSYNDEX and PubMed using acombination of the keywords heart transplantation, heart transplantation patient, quality of life, and health-related quality of life. A total of 14studies with across-sectional design, 6studies with aprospective design and 2mixed-methods studies were identified. The stability of health-related quality of life up to 10years after transplantation has been reported. Most often generic scales, such as SF-36(8) and WHOQoL-BREF(7) were used for data collection. Demoralization, depression, pain, gastrointestinal symptoms, sexual dysfunction, and poor oral health influence health-related quality of life negatively, whereas social and family support have apositive impact. Although health-related quality of life is positively influenced by transplantation, further research regarding gender differences is needed. Disease-specific scales were rarely used.

Does ancestry influence health-related quality of life in type 1 diabetes patients? A nationwide study in Brazil.

The aim of the present study was to evaluate the relationship between self-reported color/race and genomic ancestry with HRQoL of patients with type 1 diabetes in a highly admixed population. This was a nationwide, cross-sectional study conducted with 1760 patients with type 1 diabetes from 2011 to 2014 at public clinics in all five Brazilian geographical regions. Information on HRQoL was obtained from two self-completed questionnaires: Short Form-6 Dimensions (SF-6D) and EuroQol-5 Dimensions (EQ-5D) with a visual analogue scale (EQ-VAS). Genomic ancestry was assessed using a Multiplex PCR methodology. Utility scores generated from the questionnaires were analyzed with multivariate logistic regression models. We included 1698 patients. Those patients who self-reported as black had lower EQ-VAS scores compared to the patients who self-reported as white (67.46±18.45; 72.37±16.44, respectively, p=0.02). In a linear regression model, each 1% increase in African ancestry resulted in a 9.5 point decrease in EQ-VAS score (p<0.001). In a multivariate logistic regression, after adjusting for demographic, socioeconomic status and diabetes-related variables, African ancestry remained associated with lower EQ-VAS scores. A higher level of African ancestry implicates on lower quality of life even after adjustments for sociodemographic and diabetes-related data. Gender, physical activity and diabetes-related microvascular complications were strongly associated with low HRQoL in all three questionnaires used. This fact highlights the importance of social aspects when assessing quality of life, as well as the need for regular practice of physical activity and prevention of chronic complications to improve patients' quality of life.

Understanding Children’s Physical Activity and Health-Related Quality of Life: An Expectancy-Value Approach

This review paper explores the motivational processes in physical education related to physical activity and health-related quality of life among children and adolescents. First, we review the existing body of literature relating to children’s health-related quality of life. Next, we present the expectancy-value model of achievement choice as a framework for investigating how children’s motivation in physical activity settings interacts with physical activity and health-related quality of life. In the following section, we discuss social-contextual factors within the motivational climate, and how they can enhance or constrain decisions to be physically active and influence health-related quality of life. We conclude by identifying emerging research issues, implications for practice, and suggestions for future research directions.

Does Race Influence Health-related Quality of Life and Toxicity Following Proton Therapy for Prostate Cancer?

Objective:This matched-paired analysis explores disparities in health-related quality of life (QOL) and common toxicities between African American (AA) and white patients following proton therapy for prostate cancer at our institution.Materials and Methods:A total of 1536 men with clinically localized prostate cancer were treated from 2006 to 2009 with definitive proton therapy to a median dose of 78 Gy +/− androgen deprivation therapy. A cohort of 92 consecutively treated AA men was matched to a cohort of 92 white men on the basis of National Comprehensive Cancer Network risk category and age. The 2 groups were compared with regard to comorbidities, demographics, and treatment regimen. Differences in genitourinary and gastrointestinal (GI) toxicity according to the Common Terminology Criteria for Adverse Events scale and QOL data from the Expanded Prostate Index Composite 26-question questionnaire were reported.Results:Median follow-up was 2.1 years. Baseline patient and treatment characteristics were similar between the 2 groups with the exception of prostate-specific antigen ≥10 (32% for AAs vs. 20% for whites; P=0.068) and use of androgen deprivation therapy (26% for AAs vs. 21% for whites; P=0.38). No difference in Expanded Prostate Index Composite 26-question sexual summary, urinary incontinence, urinary obstruction, or bowel summary scores was detected between the 2 groups, nor was there a difference in grade 2 or higher GI toxicity (P=0.45). AAs had a statistically nonsignificant higher absolute incidence of late grade 3 genitourinary toxicity (4.4% vs. 0%; P=0.12).Conclusions:After 2 years, there were no disparities in health-related QOL, physician-reported Common Terminology Criteria for Adverse Events GI toxicity, or biochemical relapse. Longer follow-up is needed to confirm these findings.

How Do Urinary Calculi Influence Health-Related Quality of Life and Patient Treatment Preference: A Systematic Review.

Urinary stone disease is a common and often recurrent condition that can affect kidney function and requires a range of medical and surgical treatments, all of which can have a significant impact on patients' health-related quality of life (HRQoL) and treatment preferences. To review the literature systematically for all studies that include HRQoL measurement or patient preferences in the context of urinary stone disease. Ovid MEDLINE(R), Ovid MEDLINE(R) In-Process, EMBASE, SCOPUS, EconLit, and Web of Science were searched from inception to January 2016. All study designs with adult participants were included. Narrative synthesis was performed. Thirty-five studies met the inclusion criteria (six randomized controlled trials and 29 observational studies) from 15 countries, including 5472 patients. Eleven studies showed that stone formers had worse HRQoL than the general population; it was noted that stone formers were more likely to suffer from depression. Women have significantly lower HRQoL than men. Twenty-six studies used a generic HRQoL measure and six were nonvalidated disease specific. Studies concerning patient preference were heterogeneous and showed that extracorporeal shock wave lithotripsy is still favored above other interventions and that a large number of patients would prefer the treatment pathway to be decided upon by their clinician. Urinary calculi and its treatment can have significant negative patient impact and influence patient preferences. Patients with stone disease tend to have worse physical and mental HRQoL, quantified using generic measures. Structured research with disease-specific measures underpinned by sound methodology would be beneficial and aid in development of patient-centric management. This review was prospectively registered with the international prospective register of systematic reviews-PROSPERO 2013:CRD42013006084.

Factors that Influence Health-Related Quality of Life in Patients with Primary Sclerosing Cholangitis.

Primary sclerosing cholangitis (PSC) is an incurable, cholestatic liver disease often coincident with inflammatory bowel disease (IBD). To evaluate the impact of liver disease and IBD on health-related quality of life (HRQoL) in PSC. A mixed-methods, cross-sectional study was performed at a tertiary center. Short Form-36 (SF-36) scores were compared between PSC, Canadian normative data, and disease controls. Disease-specific instruments scores [PBC-40, Short IBD questionnaire, Liver Disease Quality of Life Questionnaire (LDQOL)] were compared between PSC and disease controls. Multivariable regression identified factors independently associated with final SF-36 component scores. Qualitative evaluation of patient questionnaires was performed using a content analysis framework. One hundred and sixty-two surveys were completed (99 PSC, 26 primary biliary cirrhosis, 16 non-autoimmune cholestatic liver disease, and 21 IBD). PSC patients had significantly lower SF-36 scores than Canadian controls, but similar scores to disease controls. LDQOL most accurately predicted HRQoL. Factors negatively associated with physical HRQoL included shorter IBD duration, liver disease symptoms, and decompensated cirrhosis. Mental HRQoL was influenced by liver disease and IBD symptoms, pruritus, social isolation, and depression. Nearly 75% expressed existential anxiety regarding disease progression and diminished life expectancy, with 25% disclosing social isolation. Patients with PSC have significantly lower HRQoL than healthy controls. Both symptoms of IBD and chronic liver disease impact HRQoL in patients with PSC, which lead to significant psychologic burden that is expressed by existential anxieties and social isolation. A PSC-specific HRQoL tool is critical to adequately quantify the distinct impact of IBD and cholestatic liver disease.

Do Personal Resources Influence Health-Related Quality of Life for People Receiving Hemodialysis Treatment in Latin America?

We used the Kidney Disease Quality of Life Survey and Chronic Illness Resources Survey to determine the personal resources that influence health-related quality of life (HRQOL) of 128 individuals receiving treatment for end-stage renal disease in Antofagasta, Chile. The results showed that personal and community resources protect against disability and physical deterioration among individuals receiving hemodialysis. Further, these resources had a direct influence on HRQOL, especially in relation to the burden of the disease and for those who are not in paid employment. Our findings show the importance of the availability and use of measures required for the community to improve HRQOL, and to protect the physical health of people undergoing hemodialysis.

Does extended surgery influence health-related quality of life in patients with rectal cancer?

In locally advanced rectal cancer, an extended resection peripheral to the mesorectal fascia is needed to achieve a radical resection. The influence of extended resections on health-related quality of life is unclear. Differences in health-related quality of life and sexuality between patients receiving standard surgery and patients receiving extended surgery were examined, with a focus on age. Patients operated on for rectal cancer between 2000 and 2010 were selected from a database and invited to complete the European Organization for Research and Treatment of Cancer quality-of-life questionnaires (C30 and ColoRectal 38). All patients were treated at the Catharina Hospital, Eindhoven, the Netherlands. All patients received total mesorectal excision surgery or extended surgery for rectal cancer. Health-related quality of life and sexual activity was compared between patients treated with total mesorectal excision surgery and extended surgery and further stratified by age at the time of surgery (<70 and ≥70). Two hundred twenty-nine (64.1%) patients with standard surgery and 128 (35.9%) patients treated with extended resections responded. Extended surgery in patients <70 years resulted in lower body image compared with patients <70 years receiving standard surgery. Patients ≥70 years had lower sexual function and more male sexual dysfunction than patients <70 years undergoing standard surgery. In all groups, sexual activity dropped significantly after treatment. No information was available of the patients' health-related quality of life before treatment except for the retrospective question about sexual activity. This study showed no major differences between patients undergoing total mesorectal excision surgery and those receiving extended surgery, with the exception of body image, which was significantly lower in patients <70 years undergoing extended surgery. In all patient groups, treatment for rectal cancer influenced sexual activity dramatically. Awareness of the impact of surgery on health-related quality of life and sexuality is needed.

Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer.

Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). Adolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population.

Does hip displacement influence health-related quality of life in children with cerebral palsy?

Objective: To evaluate the association of hip lateralisation with health-related quality of life (HRQL) in children with cerebral palsy (CP) using the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD®) questionnaire. Methods: We assessed n = 34 patients (mean age: 10.2 years, SD: 4.7 years; female: n = 16) with bilateral CP and Gross Motor Function Classification System (GMFCS) Level III–V using the CPCHILD® questionnaire. Hip lateralisation was measured by Reimer`s migration percentage (MP). Results: There was an association between both, MP and GMFCS with CPCHILD® total score. Stratified analyses did not suggest interaction of the association between MP and CPCHILD® total score by GMFCS level. After adjustment for GMFCS level, we found a significant linear decrease of CPCHILD® total score of −0.188 points by 1% increment in MP. Conclusions: There was an association between MP and HRQL, which could not be explained by the GMFCS level.

Experiences of Healthcare Provision for Foot Ulceration Occurring in People with Rheumatoid Arthritis

Participants with rheumatoid arthritis (RA) report that foot ulceration has an impact on their health-related quality of life (HRQL) across physical, social and psychological domains. What is not known is how experiences of healthcare provision influence HRQL. The present study set out to map the patent journey while integrating the impact on HRQL. A purposive sample of RA patients with open foot ulceration was recruited from podiatry clinics in West Yorkshire (UK) between May 2008 and June 2009. Patients with diabetes were excluded (the impact of foot ulceration in this group is well established). In-depth interviews were taped and transcribed. A framework approach to data management was used to facilitate a case- and theme-based analysis. Twenty-three RA patients (18 female, five male; aged 45-88 years) participated. Two themes and five sub-themes were identified. The patient journey theme comprised the following sub-themes: access to care; knowledge acquisition; care pathways and continuity of care. Patient-professional relationships comprised the sub-themes: therapeutic patient-professional relationships and task-orientated care. The journey took a highly variable course that was influenced by patient-specific factors (past experience of ulceration; symptomology; knowledge and self-efficacy); service-specific factors (access to care and care pathways) and professional-specific factors (knowing and trusting someone; holism). The present study highlights the need for clearer care pathways for patients affected by foot ulceration improved patient education and better coordination of care.

Sa1258 How Does Psychological Variables Influence Health-Related Quality of Life in Crohn's Disease Patients?

“cases” and healthy subjects as “controls” (who were selected from outside the hospital and had not chronic diseases; patients with most common functional gastrointestinal diseases were ruled out by a questionnaire considering Rome III criteria). Alexithymia was defined as a specific disturbance in psychic functioning characterized by difficulties in the capacity to verbalize affect. The level of alexithymia was determined using the Toronto Alexithymia Scale (TAS-20), adapted and validated in Spanish, through a self-administered questionnaire that assessed 3 concepts: (1) difficulty identifying feelings, (2) difficulty describing one’s feelings to others, and (3) externally oriented thinking. Alexithymia presence was defined by a score 61 on TAS-20. We calculated the risk (OR and CI95%) of having alexithymia in patients with IBD. Results: We analyzed 121 subjects:60 adult patients with IBD and 61 healthy adults from the general population. Among cases, 62% had ulcerative colitis and 38% Crohn’s disease; media age was 41 years (SD±13, range 17 85), 52% were male. Among the control group, mean age was 35 years (SD±13, range 19 81), 25% were male. The mean score of alexithymia was 46±14 in the cases and 39±11 in controls (p < 0.01). 23% (CI 13 36) of cases and 5% (CI 1 13) of controls had alexithymia (p < 0.01). Patients with IBD had higher risk of alexithymia compared to healthy controls: OR 5.88 (CI 1.45 27). After adjusting for gender, no significant differences in the level of alexithymia (p = 0.28) was observed. In the TAS-20, the main differences between the two groups were found in the items assessing “difficulty identifying feelings” (p < 0.01) and “difficulty describing feelings to others” (p = 0.04). Conclusions: Patients with IBD had almost 6 more chances to have alexithymia compared to healthy adults.

Health‐related quality of life in sickle cell disease: Past, present, and future

Health-related quality of life (HRQL) is defined as the patient's appraisal of how his/her well being and level of functioning, compared to the perceived ideal, are affected by individual health. The study of HRQL in children and adults with sickle cell disease (SCD) has begun to flourish. Given the devastating complications of the disease and other co-morbid factors patients experience that influence HRQL, it is increasingly important to understand HRQL. The focus of this critical review was to examine past and current research in HRQL in SCD where a validated instrument was used. In addition, future directions for HRQL in SCD are explored.