Impaired Health-related Quality Research Articles

Functional Constipation: Pathophysiology, evaluation, and management.

Functional constipation (FC), a disorder of the gut-brain interaction of multifactorial pathophysiology that is prevalent in paediatrics. It is associated with bothersome symptoms, increased healthcare costs, disgruntled caregivers and impaired health-related quality of life. Paediatric FC is a clinical diagnosis based on the Rome IV criteria and is characterised by decreased bowel movement frequency and/or hard, painful stools and can be complicated by retentive faecal incontinence. Stressful life events, difficult temperaments and emotional and behavioural challenges have been implicated in increasing risk of developing paediatric FC. To provide current concepts in pathophysiology, evaluation and management of paediatric FC. We reviewed pertinent literature after a comprehensive search utilising PubMed with keywords FC, chronic childhood constipation and paediatric FC. In the last decade, advances in our understanding of paediatric FC have changed the landscape of diagnosing and treating this disorder. Although polyethylene glycol is the first-line treatment for maintenance of FC, the armamentarium of therapeutics has expanded including the first Food and Drug Administration- agent, linaclotide, for children 6-17 years of age in conjunction with more emphasis on behavioural and physical therapy interventions. Treatment approach to paediatric FC should be individualised and integrated focusing on parental education, lifestyle and behavioural modifications, and pharmacological therapy to maximise therapeutic success. This review highlights advances in pathophysiology, diagnosis and treatment of FC in children.

Overweight and obesity and associated factors among public and private secondary school adolescent students in Harar city, Eastern Ethiopia: A comparative cross-sectional study.

Adolescent overweight and obesity are growing public health concerns in developing nations like Ethiopia. They are closely linked to an increased risk of non-communicable diseases, a deterioration in health-related quality of life, subpar academic performance, and a decline in social and emotional well-being. There is, however, little research in this field. Thus, this study aimed to assess overweight and obesity and associated factors among public and private secondary school adolescent students in Harar city, Eastern Ethiopia. A school-based comparative cross-sectional study was conducted among 781 secondary school adolescents in Harar city from February to March 2022. Multi-stage sampling was used to identify 781 study participants (586 in public and 195 in private schools). Anthropometric measures and self-administered structured questionnaires were used to obtain the data. Bivariate and multivariate logistic regression were used to determine the association between independent variables and overweight and obesity. Statistical significance was declared at P < .05. The overall magnitude of overweight and obesity was 9.3% [95% confidence interval (CI) = 7.2-11.4%] with 16.2% in private schools. Being female [adjusted odd ratio (AOR) = 2.04, 95% CI: 1.17-3.55], late adolescent age [AOR = 0.53, 95% CI: 0.31-0.90], bigger family size [AOR = 0.55, 95% CI: 0.31-0.97], high paternal education level [AOR = 2.03, 95% CI: 1.08-3.81], eating meat [AOR = 3.41, 95% CI: 1.27-9.17] and not consuming breakfast daily [AOR = 2.13, 95% CI: 1.24-3.67] were factors associated with overweight and obesity among all secondary school adolescents. A high maternal educational level, not eating breakfast and dinner daily in private secondary school adolescents and having a feminine gender, eating eggs, and not walking or riding a bicycle for at least 10 minutes continuously in public secondary school adolescents were factors associated with overweight and obesity. The extent of overweight and obesity was notably higher in the study area. Communities and educational institutions should work together to promote healthy lifestyle choices among adolescents, with a special emphasis on girls and students enrolled in private schools.

#2225 Educational level and gender are associated with emotional well-being in a cohort of Dutch dialysis patients

Abstract Background and Aims Patients undergoing dialysis have an impaired health-related quality of life (HRQOL). There are conflicting data from small series whether patient-related factors such as educational level have an impact on experienced HRQOL. The aim of this study was to investigate the association between educational level and HRQOL in dialysis patients. Method In a single-center retrospective cross-sectional study HRQOL was measured using the Kidney Disease Quality of Life Short Form-36 (KDQOL-SF36) in prevalent chronic dialysis patients. Educational level was categorized into low, intermediate and high subgroups. Univariate and multivariate regression analyses were performed to assess the effects of age, gender, ethnicity, and dialysis vintage on the association between HRQOL and educational level. Results 129 chronic dialysis patients were included. The median age of the patients was 65.0 years and 58% of the patients were male. The median age did not differ between men and women (67.0 vs. 63.0 years, p = 0.673). Median dialysis vintage was 15.0 months. Patients with an intermediate educational level (OR: 4.37 [1.89-10.13]) and a high educational level (OR 4.13 [1.04-16.42]) had significantly higher odds of higher emotional well-being than patients with a low educational level. The odds for women compared to men were 2.83 [1.32-6.06] for better general health and 2.59 [1.15-5.84] for emotional well-being. There was no interaction between gender and educational level for both subdomains. Each year of increasing age was associated with decreased physical functioning (OR 0.94 [0.91–0.97]). Conclusion Low educational level and male sex were associated with worse emotional well-being compared to intermediate and high educational level and female sex in dialysis patients. Physical functioning decreased with increasing age.

Morning light treatment for inflammatory bowel disease: a clinical trial.

Inflammatory bowel disease (IBD) affects over 3million Americans and has a relapsing and remitting course with up to 30% of patients experiencing exacerbations each year despite the availability of immune targeted therapies. An urgent need exists to develop adjunctive treatment approaches to better manage IBD symptoms and disease activity. Circadian disruption is associated with increased disease activity and may be an important modifiable treatment target for IBD. Morning light treatment, which advances and stabilizes circadian timing, may have the potential to improve IBD symptoms and disease activity, but no studies have explored these potential therapeutic benefits in IBD. Therefore, in this study, we aim to test the effectiveness of morning light treatment for patients with IBD. We will recruit sixty-eight individuals with biopsy-proven IBD and clinical symptoms and randomize them to 4-weeks of morning light treatment or 4-weeks of treatment as usual (TAU), with equivalent study contact. Patient-reported outcomes (IBD-related quality of life, mood, sleep), clinician-rated disease severity, and a biomarker of gastrointestinal inflammation (fecal calprotectin) will be assessed before and after treatment. Our primary objective will be to test the effect of morning light treatment versus TAU on IBD-related quality of life and our secondary objectives will be to test the effects on clinician-rated disease activity, depression, and sleep quality. We will also explore the effect of morning light treatment versus TAU on a biomarker of gastrointestinal inflammation (fecal calprotectin), and the potential moderating effects of steroid use, restless leg syndrome, and biological sex. Morning light treatment may be an acceptable, feasible, and effective adjunctive treatment for individuals with active IBD suffering from impaired health-related quality of life. The study protocol was registered on ClinicalTrials.gov as NCT06094608 on October 23, 2023, before recruitment began on February 1, 2024.

Educational level and gender are associated with emotional well-being in a cohort of Dutch dialysis patients

BackgroundPatients undergoing dialysis have an impaired health-related quality of life (HRQOL). There are conflicting data from small series on whether patient-related factors such as educational level have an impact on experienced HRQOL. The aim of this study was to investigate the association between educational level and HRQOL in dialysis patients.MethodsIn a single-center retrospective cross-sectional study HRQOL was measured using the Kidney Disease Quality of Life Short Form-36 (KDQOL-SF36) in prevalent chronic dialysis patients. Educational level was categorized into low, intermediate and high subgroups. Univariate and multivariate regression analyses were performed to assess the effects of age, gender, ethnicity, and dialysis vintage on the association between HRQOL and educational level.ResultsOne hundred twenty-nine chronic dialysis patients were included. Patients with an intermediate educational level had significantly higher odds of a higher emotional well-being than patients with a low educational level 4.37 (1.-89–10.13).A similar trend was found for a high educational level (OR 4.13 (1.04–16.42), p = 0.044) The odds for women compared to men were 2.83 (1.32–6.06) for better general health and 2.59 (1.15–5,84) for emotional well-being. There was no interaction between gender and educational level for both subdomains. Each year of increasing age significantly decreased physical functioning (OR 0.94 (0.91–0.97)).ConclusionsEducational level and sex were associated with emotional well-being, since patients with intermediate and high educational level and females had better emotional well-being in comparison to patients with low educational level and males. Physical functioning decreased with increasing age.

Linguistic, Content and Face Validity of the Swedish Version of a Quality-of-Life Assessment for Children, Teenagers and Adults with Spina Bifida.

Spina bifida includes a spectrum of different neural tube defects. Myelomeningocele is the most serious type and is associated with a risk of paralysis and sensory dysfunction below the affected level, bladder/bowel dysfunction, brain dysmorphology, and impaired health-related quality of life (HRQoL). The aim of this study was to describe the establishment of linguistic, content and face validity of the Swedish version of a Quality-of-Life Assessment for children (QUALAS-C, n = 10 items), teenagers (QUALAS-T, n = 10 items) and adults with spina bifida (QUALAS-A, n = 15 items) based on the original US English versions. The process included close collaboration with the original instrument developer and complied with international standards on patient-reported outcome measurements. The procedure includes forward translation, expert and patient/parent review and reconciliation, back translation, back translation review and cognitive debriefing interviews with 16 people with spina bifida aged 8 to 33, providing them with the possibility of evaluating the clarity, adequacy, and comprehensiveness of QUALAS-C, QUALAS-T and QUALAS-A, respectively. The interviews lasted a median of 15 min (range 8-16) for QUALAS-C, 10 min (range 9-15) for QUALAS-T and 24 min (range 9-38) for QUALAS-A. Four main issues/topics needed attention and discussion after both the forward and back translation. Following the back translation review, all issues were resolved. The patient feedback revealed recognition of the HRQoL issues included in QUALAS, and also difficulties in understanding some questions. After the patients' evaluation, four items were reworded for clarity. No study participant reported a wish to add to or remove questions from QUALAS. Hence, the Swedish versions of QUALAS became conceptually equivalent to the original US English versions and achieved linguistic, content and face validity. While empowering the voices of people with spina bifida, these results also enable their HRQoL to be properly assessed in research and clinical care in Sweden and in international studies.

Rehabilitation in obstructive sleep apnea: an ignored treatment adjunct.

Patients with obstructive sleep apnea (OSA) remain physically inactive during the day, are deconditioned, and have an impaired health-related quality of life (HRQoL). The role of rehabilitation is not yet defined in OSA, despite proven effective modalities for chronic illnesses like chronic obstructive pulmonary disease. In this prospective study, over a period of one year, 30 individuals with sleep-disordered breathing were included. Before recruitment, every patient was receiving continuous positive airway pressure treatment for at least 4 weeks. A statistically significant negative correlation was seen between the apnea hypopnea index and reductions in 6-minute walk distance, energy, and general health, which signified that patients with greater levels of daytime sleepiness have poor quality of life and are more deconditioned. Enrolled patients in the study underwent a 20-session rehabilitation program (with a minimum of 2 sessions per week). The patient received resistance and endurance exercises, dietary guidance, and counseling at each session. Before and after rehabilitation, target parameters such as 6MWD, HRQoL domains, Epworth sleepiness scale (ESS), and body mass index (BMI) were recorded. All 8 HRQoL domains showed improvement post-rehabilitation. Along with improvements in ESS and BMI, the 6MWD was also improved. No adverse event such as cardio-respiratory distress occurred in individuals undergoing rehabilitation. To conclude, rehabilitation is a safe and efficacious modality as an adjunct to positive airway pressure therapy in OSA patients.

Financial Toxicity Experiences of Patients With Cancer in Indonesia: An Interpretive Phenomenological Analysis

ObjectivesFinancial toxicity (FT) is an important adverse effect of cancer. Recent systematic reviews have shown that FT may lead to treatment nonadherence and impaired health-related quality of life, both of which may adversely influence the survival rates of patients. However, less is known about how patients endure FT, particularly in low- and middle-income countries. The purpose of this study was to explore how patients with cancer experience and cope with FT in Indonesia. MethodsSemistructured in-depth interviews were conducted to explore the experiences of Indonesian patients with cancer. Qualitative data were analyzed using interpretive phenomenological analysis approach. We purposefully recruited 8 patients undergoing active treatment (aged 27-69 years) who had been diagnosed of cancer over 5 years before and possessed health insurance at the time of diagnosis. ResultsWe identified 2 main themes: (1) the experienced financial burden, with subthemes underinsurance, out-of-pocket nonhealthcare cancer-related costs, and negative income effect from employment disruption, and (2) the financial coping strategies, with subthemes reallocating household budget, seeking family support, rationalizing treatment decisions, and topping up insurance for family members. ConclusionsThis is the first interpretive phenomenological study on FT in the literature and the first qualitative FT study in Indonesia. Our findings provide insight into the occurrence of FT and coping strategies used by Indonesian patients with cancer. The subjective experiences of patients may be considered to further improve oncology care, support the need for measurement of FT, and provide mitigation programs for patients.

Association of pulmonary function test abnormalities and quality-of-life measures after COVID-19 infection

BackgroundLong-COVID is a multisystem disease that can lead to significant impairments in health-related quality of life (HRQoL). Following COVID-19 infection, abnormalities on pulmonary function tests (PFT) are common. The primary aim of this study is to evaluate for any correlation between PFT abnormalities and impairment in HRQoL scores following COVID-19 infection. MethodsThis is an analysis of a prospective cohort of patients in Louisville, KY who were infected with COVID-19. Data collected included demographics, past medical history, laboratory tests, PFTs, and several HRQoL questionnaires such as the EuroQol 5 Dimension HRQoL questionnaire (EQ-5D-5 L), Generalized Anxiety Disorder 7 (GAD-7), Patient Health Questionnaire (PHQ-9), and Posttraumatic stress disorder checklist for DSM-5 (PCL-5). Descriptive statistics were performed, comparing PFTs (normal vs abnormal) and time since COVID-19 infection (3- vs 6- vs ≥ 12 months). ResultsThere were no significant differences in FEV1, FVC, or the percentage of patients with abnormal PFTs over time after COVID-19 infection. Following COVID-19, patients with normal PFTs had worse impairment in mobility HRQoL scores and change in GAD-7 scores over time. There were no differences over time in any of the HRQoL scores among patients with abnormal PFTs. ConclusionsAmong patients with an abnormal PFT, there was no temporal association with HRQoL scores as measured by EQ-5D-5 L, GAD-7, PHQ-9, and PCL-5. Among patients with a normal PFT, mobility impairment and anxiety may be associated with COVID-19 infection. Following COVID-19 infection, impairment in HRQoL scores is not completely explained by the presence of abnormalities on spirometry.

Internet addiction and health-related quality of life in adolescents: The mediating role of sleep disturbance

Internet addiction (IA) has emerged as a recognized risk factor associated with impaired health-related quality of life (HRQOL) in adolescents. However, the role of sleep disturbance in this association remains unclear. This study aimed to investigate the association of IA with HRQOL in Chinese adolescents and to evaluate the potential mediating role of sleep disturbance. A cross-sectional study was conducted among adolescents attending six randomly selected middle schools in Guangzhou, China. Adolescents self-reported their internet use using the Young Diagnostic Questionnaire. HRQOL and sleep disturbance were assessed by the Pediatric Quality of Life Inventory version 4.0 and the Pittsburgh Sleep Quality Index, respectively. Multivariate linear regression analysis was employed to assess the association between IA and HRQOL. Baron and Kenny's causal steps method was used to examine the possible mediating role of sleep disturbance. Of the 6473 adolescents included, 23.5% had maladaptive internet use (MIU) and 16.6% had pathological internet use (PIU). Compared to adolescents with adaptive internet use (AIU), those with IA had significantly lower scores across all HRQOL dimensions and summary scales. Mediation analysis revealed that sleep disturbance was a significant mediator. Specifically, sleep disturbance mediated 34.55% of the effects of MIU and 34.06% of the effects of PIU on the HRQOL total scale score , respectively. IA was associated with poorer HRQOL, indicating the needs of preventing IA in Chinese adolescents. Additionally, our findings underscored the importance of enhancing sleep quality to mitigate the adverse impact of IA on adolescents' well-being.

Impaired health-related quality of life in idiopathic inflammatory myopathies: a cross-sectional analysis from the COVAD-2 e-survey.

To investigate health-related quality of life in patients with idiopathic inflammatory myopathies (IIMs) compared with those with non-IIM autoimmune rheumatic diseases (AIRDs), non-rheumatic autoimmune diseases (nrAIDs) and without autoimmune diseases (controls) using Patient-Reported Outcome Measurement Information System (PROMIS) instrument data obtained from the second COVID-19 vaccination in autoimmune disease (COVAD-2) e-survey database. Demographics, diagnosis, comorbidities, disease activity, treatments and PROMIS instrument data were analysed. Primary outcomes were PROMIS Global Physical Health (GPH) and Global Mental Health (GMH) scores. Factors affecting GPH and GMH scores in IIMs were identified using multivariable regression analysis. We analysed responses from 1582 IIM, 4700 non-IIM AIRD and 545 nrAID patients and 3675 controls gathered through 23 May 2022. The median GPH scores were the lowest in IIM and non-IIM AIRD patients {13 [interquartile range (IQR) 10-15] IIMs vs 13 [11-15] non-IIM AIRDs vs 15 [13-17] nrAIDs vs 17 [15-18] controls, P < 0.001}. The median GMH scores in IIM patients were also significantly lower compared with those without autoimmune diseases [13 (IQR 10-15) IIMs vs 15 (13-17) controls, P < 0.001]. Inclusion body myositis, comorbidities, active disease and glucocorticoid use were the determinants of lower GPH scores, whereas overlap myositis, interstitial lung disease, depression, active disease, lower PROMIS Physical Function 10a and higher PROMIS Fatigue 4a scores were associated with lower GMH scores in IIM patients. Both physical and mental health are significantly impaired in IIM patients, particularly in those with comorbidities and increased fatigue, emphasizing the importance of patient-reported experiences and optimized multidisciplinary care to enhance well-being in people with IIMs.

Role of Repetitive Transcranial Magnetic Stimulation in Treatment of Fibromyalgia: A Randomized Controlled Trial.

Fibromyalgia syndrome (FMS) is a chronic disease characterized by widespread, persistent musculoskeletal pain in association with impaired health-related quality of life. Repetitive transcranial magnetic stimulation (rTMS) is an emerging tool for the management of fibromyalgia. There is no standardized protocol of rTMS for the treatment of FMS, and both low- and high-frequency stimulation of the dorsolateral prefrontal cortex (DLPFC) are described in the literature with variable efficacy. The objective of this study was to determine the effectiveness of rTMS in people with fibromyalgia and compare the response of low- and high-frequency stimulation with sham stimulation. This study was a single-blinded, randomized, placebo-controlled trial. Ninety patients with the diagnosis of FMS were randomly allocated into one of the following three groups: low-frequency (1 Hz) group, high-frequency (10 Hz) group, and sham group. Pain, depression, anxiety, and quality of life were measured using the Numerical Pain Rating Scale (NPRS), Hamilton Anxiety Rating Scale (HAM-A), Hamilton Depression Rating Scale (HDRS), and Revised Fibromyalgia Impact Questionnaire (FIQR) immediately following treatment as well as at 1 and 3 months after treatment. The data was statistically analyzed using Statistical Package for the Social Sciences version 23 software. P value < 0.05 was considered statistically significant. Intergroup analysis revealed a significant improvement in NPRS, HAM-A, HDRS, and FIQR scores in both low- and high- frequency groups immediately following treatment and for 3 months after treatment. No significant difference in the efficacy of low- and high-frequency stimulation was noticed. rTMS is an effective mode of treatment in people with FMS. Both low and high frequencies of stimulation at DLPFC are equally effective in reducing pain and associated symptoms.

Health Implications of Lipedema: Analysis of Patient Questionnaires and Population-Based Matched Controls.

We conducted a comparative study involving 39 female patients with lipedema and group-matched controls at a ratio of 1:5. The primary survey tool was the German Health Update (GEDA 2019/2020-EHIS) questionnaire, which was developed by the Robert Koch Institute (RKI), Germany. The secondary survey tool was the German Pain Questionnaire. The prevalence of hypertension (p = 0.041) and high blood lipids (p = 0.024) was lower in the lipedema group compared to the control group. General health and well-being indicators demonstrated lower overall health ratings (p < 0.001) and higher physiotherapy use in patients with lipedema (p = 0.016). Mental health assessment revealed higher depression prevalence and severity (p = 0.001), together with a lower number of close contacts (p = 0.032). Furthermore, patients with lipedema experienced higher levels of pain (p < 0.001) and more significant pain-related disability in daily activities (p < 0.001) than controls. Correlation analysis among patients with lipedema showed a positive correlation between pain severity and depressive symptoms (ρ = 0.612, p < 0.001) and a moderate positive correlation with impaired health-related quality of life (ρ = 0.418, p = 0.010). In summary, our findings highlight significant differences in health and well-being between patients with lipedema and matched controls, especially in overall, metabolic, and mental health, as well as pain perception. The findings emphasize the need for a validated lipedema-specific questionnaire and a multidisciplinary treatment approach with a combination of physical therapies, lifestyle adjustments, and psychological strategies.

Factors of impaired health-related quality of life in patients with precapillary pulmonary hypertension

Factors of impaired health-related quality of life in patients with precapillary pulmonary hypertension

Determination of a cut-off COmprehensive Score for financial Toxicity (COST) for identifying cost-related treatment nonadherence and impaired health-related quality of life among Chinese patients with cancer

PurposeThis study aimed to determine a cut-off for the simplified Chinese version of the COmprehensive Score for financial Toxicity (COST) that could identify cost-related treatment nonadherence among Chinese patients with cancer. The study also sought to validate this cut-off score by using it to assess impaired health-related quality of life (HRQoL) in the same population.MethodsA secondary analysis was conducted using data from a cross-sectional survey of 1208 Chinese patients with cancer who were recruited from 12 hospitals in six cities across three provinces of the Chinese mainland. Sociodemographic information and data on financial toxicity (FT), cost-related treatment nonadherence, and HRQoL were used in the analysis. Receiver operating characteristic (ROC) analysis was used to determine the optimal cut-off for the simplified Chinese version of the COST.ResultsThe ROC analysis identified a COST cut-off of 18.5 for identifying cost-related treatment nonadherence, yielding a sensitivity of 76.5% and specificity of 71.4%. In the validation study, this cut-off score yielded a sensitivity of 64.2% and a specificity of 67.1% for identifying impaired HRQoL.ConclusionEarly and dynamic assessment of cancer-related FT in routine clinical practice may play a crucial role in the early identification and management of FT. Accordingly, a COST cut-off of 18.5 was identified to indicate cost-related treatment nonadherence and impaired HRQoL in a population of patients with cancer from the Chinese mainland. This finding may facilitate the implementation of universal FT screening among patients with cancer in specific settings such as the Chinese mainland.

Malnutrition prevalence in cancer patients in Belgium: The ONCOCARE study

RationaleUnintentional weight loss and malnutrition are common among cancer patients. Malnutrition has been associated with impaired health-related quality of life, less well-tolerated chemotherapy regimens and shorter life duration. In Belgium there is a lack of epidemiological data on malnutrition in oncology patients at advanced stages of the disease.MethodsMalnutrition assessment data was collected through a prospective, observational study in 328 patients who started a neoadjuvant anticancer therapy regimen or who started 1st, 2nd or 3rd line anticancer therapy for a metastatic cancer via 3 visits according to regular clinical practice (baseline visit (BV) maximum 4 weeks before start therapy, 1st Follow up visit (FUV1) ± 6 weeks after start therapy, FUV2 ± 4 months after start therapy). Malnutrition screening was evaluated using the Nutritional Risk Screening score 2002 (NRS-2002)and the diagnosis of malnutrition by the GLIM criteria. In addition, SARC-F questionnaire and Fearon criteria were used respectively to screen for sarcopenia and cachexia.ResultsPrevalence of malnutrition risk at BV was high: 54.5% of the patients had a NRS ≥ 3 (NRS 2002) and increased during the study period (FUV1: 73.2%, FUV2: 70.1%). Prevalence of malnutrition based on physician subjective assessment (PSA) remained stable over the study period but was much lower compared to NRS results (14.0%—16.5%). At BV, only 10% of the patients got a nutrition plan and 43.9% received ≤ 70% of nutritional needs, percentage increased during FU period (FUV1: 68.4%, FUV2: 67.6%). Prevalence of sarcopenia and cachexia were respectively 12.4% and 38.1% at BV and without significant variation during the study period, but higher than assessed by PSA (11.6% and 6.7% respectively). Figures were also higher compared to PSA. There were modifications in cancer treatment at FUV1 (25.2%) and at FUV2 (50.8%). The main reasons for these modifications at FUV1 were adverse events and tolerability. Patient reported daily questionnaires of food intake showed early nutritional deficits, preceding clinical signs of malnutrition, and therefore can be very useful in the ambulatory setting.ConclusionsPrevalence of malnutrition and cachexia was high in advanced cancer patients and underestimated by physician assessment. Earlier and rigorous detection of nutritional deficit and adjusted nutritional intake could lead to improved clinical outcomes in cancer patients. Reporting of daily caloric intake by patients was also very helpful with regards to nutritional assessment.

Indirect effects of health-related quality of life on suicidal ideation through psychological distress among cancer patients.

The interrelationships of suicidal ideation, psychological distress, and impaired health-related quality of life (HRQoL) in cancer patients are complex and multifaceted. Limited empirical evidence exists on the indirect effects of impaired HRQoL on suicidal ideation through psychological distress among cancer patients. To fill this research gap, 250 cancer patients were recruited through a cross-sectional hospital-based research design. Structural equation model (SEM) results indicated that impaired HRQoL is a predictor of psychological distress (β = 0.153; p < 0.05), and psychological distress positively predicts suicidal ideation (β = 0.647; p < 0.000). The study found no direct effects of impaired HRQoL on suicidal ideation (β = -0.05; p = 0.223). Indirect effects of HRQoL on suicidal ideation was confirmed, showing a full-mediation effect β = 0.099 (SE = 0.048, CI = [0.030, 0.189], p < 0.05) (i.e. the pathway impaired HRQoL predict suicidal ideation is through psychological distress). Cognitive-behavioral therapy and other emotional support programs should be considered for cancer patients to mitigate psychological vulnerabilities linking impaired HRQoL to suicidal ideation.

Health-related quality of life and its influencing factors in patients with primary cutaneous B-cell lymphomas: A multicentric study in 100 patients.

Primary cutaneous B-cell lymphomas (CBCL) are a group of rare malignant skin diseases that represent approximately 20%-30% of all primary cutaneous lymphomas (PCL). Previous studies revealed impaired health-related quality of life (HRQoL) in patients diagnosed with primary cutaneous T-cell lymphoma (CTCL). Currently, only small-sized studies investigated HRQoL in CBCL patients and lacked detailed analysis of respective subtypes. This study aims to investigate HRQoL in CBCL patients to identify independent factors of HRQoL impairment in CBCL patients. One hundred CBCL patients were recruited from eight German PCL centres in this multicentric, cross-sectional study from 2021 to 2022. The patients completed the dermatologic HRQoL questionnaire Skindex-29 and an investigator-designed 'CBCL-Questionnaire' with additional questions on HRQoL and clinical characteristics. The Skindex-29 revealed that HRQoL in CBCL patients is impaired on a mild to moderate level. The multiple regression analysis identified parameters like worries about dying, feeling prejudiced/discriminated and impairment of daily activities to be independently associated with impairment of HRQoL. Highest scores for HRQoL impairment were found in patients with primary cutaneous follicle centre lymphoma while on rituximab treatment and in patients with primary cutaneous marginal zone lymphoma while on watchful waiting. HRQoL is impaired in CBCL patients, even though, in the face of indolent disease course and favourable prognosis in the majority of cases. Of note, our investigator-designed tool identified worries about dying, feeling prejudiced/discriminated, and the type of treatment to have a negative impact on patients' HRQoL. Our study highlights the importance of a thorough patient-doctor communication to capture overall disease burden because generic HRQoL tools might lack of disease-specific items.

Health literacy in adult patients with atopic dermatitis: A cross-sectional study

BackgroundHealth literacy is defined as the degree to which individuals have the capacity to obtain, process, and understand health information and services needed to make appropriate health decisions. Patients with limited health literacy are less likely to manage chronic diseases appropriately. ObjectiveTo assess the prevalence of limited health literacy in patients with atopic dermatitis (AD), and its association with other patient-reported outcomes. MethodsA cross-sectional questionnaire-based study was conducted at a tertiary referral centre for AD. Patients diagnosed with AD by a dermatologist between 2019 and 2021 were identified from medical records. Perception-based health literacy was assessed by the European Health Literacy Survey Questionnaire 16 (HLS-EU-Q16) and performance-based health literacy by the Newest Vital Sign (NVS). Patients completed the Patient-Oriented Eczema Measure (POEM), Dermatology Life Quality Index (DLQI), and Atopic Dermatitis Control Tool (ADCT) to measure AD severity, quality of life and AD disease control, respectively. ResultsIn total, 322 patients were included (response rate 48.3%). Based on the HLS-EU-Q16, 32.4% had limited health literacy (8.4% inadequate and 24.0% problematic) which was associated with impaired quality of life. According to the NVS, 20.3% had inadequate health literacy which was associated with older age. ConclusionUp to one-third of the patients with AD showed signs of limited health literacy, which was associated with impaired health related quality of life and older age. Further research should evaluate the influence of inadequate health literacy on health outcomes and focus on strategies to improve organizational health literacy to eventually enhance patient-centered care.

Gender Disparities in Psychological Disturbances and Quality of Life Among Adolescent and Adult Patients with Thalassemia: A Review.

Thalassemia is a chronic disease caused by impaired globin chain synthesis, leading to ineffective erythropoiesis, hemolysis, and chronic anemia. The treatment of patients with thalassemia, including blood transfusion combined with chelation therapy has progressed and improved their survival and prognosis. However, thalassemia-related psychological problems and impaired health-related quality of life (QoL) challenges still exist. Gender is one of the factors that has been suggested, to contribute to the disparities in psychological outcomes. This review article examined the evidence for gender differences in psychological disturbances and QoL in adolescent and adult patients with thalassemia. A non-systematic search of the literature was conducted in PubMed and Google Scholar for English full-text available from 2013 to 2023. We identified 23 studies with a sample size ≥ 100 that examined gender disparities in anxiety, depression, and QoL in adolescent and adult patients with thalassemia (mean prevalence of female = 53.1%; mean age = 28 years). Our review shows that there are gender disparities in psychological distress and QoL in adolescent and adult patients with thalassemia. Statistically significant gender differences were demonstrated in 62% of the psychological and QoL outcomes from 16 studies. Female patients had a higher prevalence of anxiety, depression, and poorer QoL in some studies. However, further studies with sufficient power and design are necessary to confirm the existence of gender disparities in psychological disturbances and QoL outcomes.