Patients with Hidradenitis Suppurativa Suffer from Low Health-Related Quality of Life as Measured by the Generic 15D Instrument

<b><i>Introduction:</i></b> Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease associated with various comorbidities and diminished quality of life (QoL). Among dermatological conditions, HS is reported to most severely diminish QoL. This study aimed to analyse the health-related QoL (HRQoL) of patients with HS in more detail by using generic to disease-specific HRQoL questionnaires. Correlations between the HRQoL measures and HS disease severity measures were assessed. <b><i>Methods:</i></b> We analysed the HRQoL and clinical severity of patients with HS (<i>N</i> = 92) treated in 5 Finnish hospitals using HRQoL measurement tools most often used in dermatological clinics, as well as the generic 15D instrument (standardized and self-administered 15-dimensional measure of HRQoL). The disease severity was assessed using the Hurley stage, International Hidradenitis Suppurativa Severity Score System, and disease severity evaluation by the investigator. <b><i>Results:</i></b> The mean 15D score of HS patients was low and comparable with that of patients with cancers. No correlation was found between HS severity measures and 15D score, indicating that even mild HS has a high impact on HRQoL. <b><i>Conclusions:</i></b> Our findings strengthen the understanding about HS as a debilitating disease and even compared with non-dermatological conditions and highlight the need of comprehensive care of patients with HS.

Health related quality of life of the geriatric population living in rural areas of West Tripura district of India: a cross-sectional study

Growing life expectancy is challenging the quality of health care for elderly. Information regarding health related quality of life (QOL) may help policy makers to design need based health programs for this population. The objectives of this study were to estimate health related QOL of the geriatric population living in rural areas of West Tripura district and to compare it between ethnic and non-ethnic populations in respect to important domains. This community based cross-sectional study was conducted during 1st February 2019 to 31st March 2020 among 225 geriatric subjects of rural West Tripura district chosen by multistage sampling. World Health Organization’s QOL-BREF scale was used for data collection. Among the study population 46.2% had overall good health related QOL. About 52.9% had good QOL in environment and 37.3% had good QOL in social relationship domains. Marginally higher proportion of the subjects from ethnic origin had better QOL than the non-ethnic but it was not significant. Higher proportion of the Muslim subjects had better QOL than the rest, but it was also not significant. Bivariate analysis showed significant associations of QOL with age, sex, literacy, financial condition, socioeconomic status and type of family. Multivariate analysis identified male sex, younger age and living with spouse as significant predictors of good QOL. Overall health related QOL of the geriatric people living in rural areas of West Tripura district is poor but younger male subjects, of ethnic origin and living with spouse may enjoy relatively better QOL.

Cognitive Behavioral Therapy plus Coping Management for Depression and Anxiety on Improving Sleep Quality and Health for Patients with Breast Cancer

Cancer-related treatments may lead to side effects that undermine a patients’ quality of life (QOL). Although cognitive behavioral therapy plus coping management (CBTM) may appear to improve health-related QOL in cancer patients, limited documentation exists on the effectiveness of psychosocial interventions for patients with breast cancer (BC) during recovery. The purpose of this study was to examine the effectiveness of CBTM for sleep quality, anxiety, depression, and health among patients with BC. An experimental study was conducted to assess the efficacy of a CBTM intervention (experimental group = 36, control group = 34). The experimental group received a 12-week CBTM intervention focused on their identity, challenges, the replacement of dysfunctional beliefs, coping skills, relaxation, and rehabilitation exercises, while the control group received usual care. The follow-up evaluations were performed immediately after the intervention (T1), and at one (T2) and three months (T3). The generalized estimating equation (GEE) model showed significant effects from the CBTM intervention over time. The experimental group showed significant improvement in sleep quality, anxiety and depressive symptoms, and significant increases in their mental and physical QOL from baseline, T1, T2, and T3—except for the mental and physical QOL showing no significant change at T3—while the control group receiving usual care showed no changes over time. The results suggest that CBTM increases sleep quality, reduces anxiety and depressive symptoms, and enhances health-related QOL for participants. CBTM is efficacious and can be provided by nurses to enhance patients’ coping skills and consequently improve their QOL.

Predictors of clinically significant quality of life impairment in Parkinson’s disease

Quality of life (QOL) plays an important role in independent living in Parkinson’s disease (PD) patients, being crucial to know what factors impact QoL throughout the course of the disease. Here we identified predictors of QoL impairment in PD patients from a Spanish cohort. PD patients recruited from 35 centers of Spain from the COPPADIS cohort from January 2016, to November 2017, were followed up during 2 years. Health-related QoL (HRQoL) and global QoL (GQoL) were assessed with the 39-item Parkinson’s disease Questionnaire (PDQ-39) and the EUROHIS-QOL 8-item index (EUROHIS-QOL8), respectively, at baseline (V0) and at 24 months ± 1 month (V2). Clinically significant QoL impairment was defined as presenting an increase (PDQ-39SI) or decrement (EUROHIS-QOL8) at V2 ≥ 10% of the score at baseline (V0). A comparison with a control group was conducted for GQoL. GQoL did not change significantly in PD patients (N = 507; p = 0.686) or in the control group (N = 119; p = 0.192). The mean PDQ-39SI was significantly increased in PD patients (62.7 ± 8.5 years old; 58.8% males; N = 500) by 21.6% (from 16.7 ± 13 to 20.3 ± 16.4; p < 0.0001) at V2. Ninety-three patients (18.6%) presented a clinically significant HRQoL impairment at V2. To be younger (OR = 0.896; 95% CI 0.829–0.968; p = 0.006), to be a female (OR = 4.181; 95% CI 1.422–12.290; p = 0.009), and to have a greater increase in BDI-II (Beck Depression Inventory-II) (OR = 1.139; 95% CI 1.053–1.231; p = 0.001) and NMSS (Non-Motor Symptoms Scale) (OR = 1.052; 95% CI 1.027–1.113; p < 0.0001) total scores from V0 to V2 were associated with clinically significant HRQoL impairment at the 2-year follow-up (Hosmer–Lemeshow test, p = 0.665; R2 = 0.655). An increase in ≥5 and ≥10 points of BDI-II and NMSS total score at V2 multiplied the probability of presenting clinically significant HRQoL impairment by 5 (OR = 5.453; 95% CI 1.663–17.876; p = 0.005) and 8 (OR = 8.217; 95% CI, 2.975–22.696; p = 0.002), respectively. In conclusion, age, gender, mood, and non-motor impairment were associated with clinically significant HRQoL impairment after the 2-year follow-up in PD patients.

Determining the effectiveness of cognitive behavioural therapy in improving quality of life in patients undergoing endometriosis surgery: a study protocol for a randomised controlled trial

IntroductionEndometriosis can cause chronic pain and subfertility thereby negatively affecting quality of life (QoL). Surgical removal of endometriosis lesions leads to improved health-related QoL, although not to the level of QoL of healthy controls. Pain intensity and cognitions regarding pain can play a crucial role in this health-related QoL following surgical treatment. Cognitive behavioural therapy (CBT) is a psychological treatment. In patients with chronic pain caused by a variety of medical conditions, CBT is effective in improving QoL. We designed a research protocol to investigate the effect of CBT on QoL in patients with endometriosis-associated chronic pain who are undergoing surgery.Methods and analysisThis is a study protocol for a randomised controlled trial in which 100 patients, undergoing endometriosis removal surgery due to endometriosis-associated chronic pain, will be randomised between post-surgery usual care with CBT and post-surgery usual care only. Participants in the CBT group will additionally receive seven sessions of CBT, focused on expectancy management, cognitions regarding pain and emotional and behavioural impact of pain. To determine the primary outcome Quality of life, both groups will complete questionnaires assessing QoL. The secondary outcomes pain intensity, pain cognitions, fatigue and perceived stress are also measured using questionnaires. Additionally, a marker for stress (cortisol extracted from a hair sample) will be assessed at T0 (baseline assessment), T1 (post-intervention; 2 weeks after completion of all CBT sessions) and T2 (follow-up; 14 weeks after T1). Statistical analysis will be performed using SPSS software.Ethics and disseminationThe study protocol has been approved by the Medical Ethical Committee of the region Arnhem-Nijmegen from the Radboud University Medical Centre on 2 September 2020. The findings of this study will be published in scientific journals and will be presented at scientific conferences.Trial registration numberNCT04448366.

Evaluating the feasibility and effectiveness of a mindfulness-based intervention on stress and anxiety of family caregivers managing peritoneal dialysis

Background Mindfulness-based intervention (MBI) has not been evaluated for its feasibility and effectiveness in reducing stress and anxiety among family caregivers of patients on peritoneal dialysis (PD). Objectives (1) To evaluate the feasibility to include MBI during PD training for family caregivers. (2) To determine the effect of MBI on the caregivers’ levels of stress (perceived stress scale, PSS), anxiety state-trait anxiety inventory, STAI), QOL (short-form 36) and reactions to caregiving (caregiver reaction assessment, CRA). (3) To determine differences in the health-related QOL (Kidney Disease Quality of Life Instrument-Short Form, KDQOL PCS and SF-36 MCS) of care recipients with caregivers receiving MBI at 1 month, 3 months and 6 months when compared to those with caregivers receiving routine training. (4) To gather the caregiver’s feedback on the MBI. Methods This feasibility study recruited family caregivers to receive either mindfulness training (MT) or treatment-as-usual (TAU) group. Both groups received 4.5-days of structured PD training, but only caregivers in the MT group received 4 days of MT sessions, audio-guided mindfulness practice at home and weekly telephone follow-up. Results Forty-four family caregivers participated in this study. Including MBI as part of the PD training was feasible. There was a trend towards lower scores for PSS and T-STAI in the MT group compared to the TAU group. The baseline score of both PSS and T-STAI were positively correlated with post-intervention outcome scores. Conclusions Mindfulness-based intervention has the potential to improve psychological symptoms among caregivers of patients with PD.

Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers

This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver’s internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver’s health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver’s mental health, coping, and parenting stress in caring for children with ASD.

Medication-related quality of life (MRQoL) in ambulatory older adults with multi-morbidity and polypharmacy

Purpose To assess medication-related quality-of-life (MRQoL) in multi-morbid older adults with polypharmacy and correlations with medications, frailty and health-related QoL. Methods With a cross sectional study of multi-morbid geriatric medicine outpatients, we assessed MRQoL (MRQol-LSv1), frailty status, potentially inappropriate medications, Medication Adherence Rating Scale (MARS), health-related-QoL (Short-Form 12, SF12) and medication burden (Living with Medicines Questionnaire, LMQv2). Results One-in-four (n = 59) of 234 outpatient attendees met inclusion criteria. Almost half (n = 106, 45%) were excluded due to cognition (MMSE < 26). Included participants (n = 27, mean age 80.2 years) experienced a median of 11 (IQR 9–13.5) co-morbidities and were prescribed a median of 10 (IQR 8–12.25) medications. Overall, MRQoL-LS.v.1 scores were low, suggesting good medication-related quality of life (median MRQoL-LS.v.1 score of 14, IQR 14–22). Correlations between MRQoL, number of daily medications, co-morbidity burden, LMQv2 score, SF12 scores and number of PIMs were non-significant. Conclusion MRQoL-LSv.1 is unsuitable for most patients attending geriatric ambulatory services.

Community Pharmacists’ Measurement of Health-related Quality of Life in Outpatients Taking High-risk Drugs

Background: Patients who develop severe side-effects when taking high-risk drugs may have a significantly reduced health-related quality of life (QOL); therefore, it is important to identify changes in health-related QOL in these patients. This study aimed to determine health-related QOL in community pharmacy outpatients taking high-risk drugs.Methods: This prospective observational study was conducted at 29 pharmacies in 12 regions and cities in Japan from October to December 2020. Using descriptive questionnaires of EuroQOL-5-dimensions-5-levels (EQ-5D-5L), community pharmacists obtained health-related QOL data from outpatients taking high-risk drugs.Results: In total, 760 outpatients were enrolled. The mean health-related QOL of all outpatients was 0.869. Health-related QOL decreased with increasing age. Outpatient health -related QOL was 0.700, 0.763, 0.785, and 0.817 when taking antiepileptic, antidepressant, digitalis, and antiarrhythmic drugs, respectively, which was lower than the average health-related QOL of all outpatients. Mobility and pain/discomfort accounted for a large proportion of the decline in health-related QOL with increasing age. No difference was found concerning personal care in relation to age; however, the number of outpatients with mobility, normal activity, and pain challenges decreased with age. In contrast, outpatients aged <65 years with anxiety/depression showed lower than overall average health-related QOL.Conclusion: Community pharmacists determined the health-related QOL of outpatients taking high-risk drugs. We clarified the contributions of the 5-dimensions.Trial registration: UMIN-CTR Study Design: trial Number UMIN 000041942. Registered 30 September 2020, https://www.umin.ac.jp

Psychological Distress and Quality of Life in Participants Undergoing Genetic Testing for Arrhythmogenic Right Ventricular Cardiomyopathy Caused by TMEM43 p.S358L: Is It Time to Offer Population-Based Genetic Screening?

<b><i>Purpose:</i></b> We have identified 27 families in Newfoundland and Labrador (NL) with the founder variant <i>TMEM43</i> p.S358L responsible for 1 form of arrhythmogenic right ventricular cardiomyopathy. Current screening guidelines rely solely on cascade genetic screening, which may result in unrecognized, high-risk carriers who would benefit from preemptive implantable cardioverter-defibrillator therapy. This pilot study explored the acceptability among subjects to <i>TMEM43</i> p.S358L population-based genetic screening (PBGS) in this Canadian province. <b><i>Methods:</i></b> A prospective cohort study assessed attitudes, psychological distress, and health-related quality of life (QOL) in unselected individuals who underwent genetic screening for the <i>TMEM43</i> p.S358L variant. Participants (<i>n</i> = 73) were recruited via advertisements and completed 2 surveys at baseline, 6 months, and 1 year which measured health-related QOL (SF-36v2) and psychological distress (Impact of Events Scale). <b><i>Results:</i></b> No variant-positive carriers were identified. Of those screened through a telephone questionnaire, &#x3e;95% felt positive about population-genetic screening for <i>TMEM43</i> p.S358L, though 68% reported some degree of anxiety after seeing the advertisement. There were no significant changes in health-related QOL or psychological distress scores over the study period. <b><i>Conclusion:</i></b> Despite some initial anxiety, we show support for PBGS among research subjects who screened negative for the <i>TMEM43</i> p.S358L variant in NL. These findings have implications for future PBGS programs in the province.