Short Form Health Survey Version Research Articles

Relationship between Mobility-Related Activities of Daily Living and Health-Related Quality of Life among Healthy Older Adults: A Cross-Sectional Study Using Structural Equation Modeling.

Objective: To develop a conceptual model that confirms whether mobility-related activities of daily living (ADLs) abilities are strongly associated with reduced health-related quality of life (HRQOL) in older adults. Methods: A total of 153 participants (63 men, 90 women) were analyzed. The mobility-related ADL survey from the Ministry of Education, Culture, Sports, Science, and Technology of Japan was used. The Japanese version (v1.2) of the Medical Outcomes Study 36-item Short-Form Health Survey was administered to evaluate HRQOL. Structural equation modeling was performed to test a hypothetical model: mobility-related ADL abilities would influence HRQOL. Results: The chi-square value was not significant (chi-square = 9.463, p = .305), and goodness-of-fit values were high, implying that the model was validated; goodness-of-fit index, 0.981; adjusted goodness-of-fit index, 0.949; comparative fit index, 0.996; and root mean square error of approximation, 0.035. Results showed that mobility-related ADL abilities influenced the physical health including physical function and general health in HRQOL. Conclusions: This study developed the conceptual model confirming the influence of mobility-related ADL abilities especially on physical health. Further intervention studies on instructions/training for physical activity of healthy older adults should assess this causal relationship.

Effect of Activities of Daily Living on Quality of Life among Japanese Adults with Duchenne Muscular Dystrophy

Objectives: This study aimed to evaluate the relationship between activities of daily livings (ADLs) and psychological distress along with the quality of life (QOL) in Japanese adults with Duchenne muscular dystrophy. Patients and Methods: This study surveyed 36 adults using the Functional Independence Measure (FIM), the 36-Item Short-Form Health Survey (SF-36 v2) version 2.0, World Health Organization QOL-26, and Hospital Anxiety and Depression Scale. Results: No significant correlation was observed between the FIM scores and scores for all three scales (R

Psychosocial function, legal involvement and violence in mental disorder.

The correlates of legally significant outcomes that have been identified in people with mental disorders are of limited value in understanding the mechanisms by which these outcomes occur. To describe the relationships between mental disorder, impaired psychosocial function, and three legally significant outcomes in a representative sample of the US population. We used a population survey, the National Epidemiologic Survey on Alcohol and Related Conditions (NESARC-III, sample size 36,309), to identify people who self-reported serious trouble with the police or the law over the past 12months and two lifetime outcomes, being incarcerated and engaging in violence to others. DSM-5 categories were generated using the Alcohol Use Disorder and Associated Disabilities Interview Schedule-5. Psychosocial function was assessed using social and role-emotional function scores of the 12-Item Short-Form Health Survey Version 2. Participants with mental disorder, but not people with no diagnosis, who reported serious trouble with the police or with the law during the previous 12months reported significantly worse psychosocial function than those who did not report such trouble. The size of the statistical effect varied by diagnosis, moderate for some forms of mental illness and for alcohol abuse and nonsignificant for drug abuse and the personality disorders. Effect sizes were largest for diagnoses where legally significant outcomes were least common. The effect of impaired psychosocial function, for instance in disrupting family and social networks that would otherwise protect against these legally significant outcomes, warrants further investigation in studies with longitudinal designs.

Psychometric Properties of a New Simplified Scale to Assess the Quality of Workers' Rest and Recreation on Their Days Off.

In this study, we developed and tested the validity and reliability of the 12-item Rest and Recreation Quality Scale (RRQ-Scale) for Workers as a new scale capable of conveniently assessing the quality of workers' days off, that is, their rest and recreation. Participants included 756 employees (694 men, 62 women, mean age ± SD= 44.7 ± 13.5, age range = 18-81) of 26 manufacturing-related companies located in Oita Prefecture, Japan. We analyzed the factorial validity of the scale's score distribution and its criterion-related validity and reliability (Cronbach's coefficient α), compared to MOS 36-Item Short-Form Health Survey version 2.0 (SF-36v2) and the generalized self-efficacy scale. Participants responded to the 12 questions on 4-point scales; these were summed to calculate the total score (score range: 12-48 points). The smallest and largest mean ± SD of the questions were 2.53 ± 0.89 and 3.21 ± 0.74, respectively, which are within the possible score range (1-4, implying the absence of floor and ceiling effects). A confirmatory factor analysis indicated that the goodness of fit of the higher-order factor analysis model was satisfactory (GFI = 0.955), confirming factorial validity. In addition, consistent with the theoretical predictions, the total score exhibited statistically significant positive correlations with the components of the SF-36v2; physical component summary (PCS): rs = 0.193, P < 0.001, mental component summary (MCS): rs = 0.369, P < 0.001, and role/social Component Summary (RCS): rs = 0.115, P = 0.002. This confirmed criterion-related validity. Further, the overall reliability of the scale was high; α = 0.877. In sum, the score distribution, validity, and reliability of the RRQ-Scale for workers were good, indicating a high degree of practicality.

Effects of Wearable Powered Exoskeletal Training on Functional Mobility, Physiological Health and Quality of Life in Non-ambulatory Spinal Cord Injury Patients.

BackgroundSpinal cord injury (SCI) is a serious clinical condition that impacts a patient's physical, psychological, and socio-economic status. The aim of this pilot study was to evaluate the effects of training with a newly developed powered wearable exoskeleton (Hyundai Medical Exoskeleton [H-MEX]) on functional mobility, physiological health, and quality of life in non-ambulatory SCI patients.MethodsParticipants received 60 minutes of walking training with a powered exoskeleton 3 times per week for 10 weeks (total 30 sessions). The 6-minute walking test (6MWT) and timed-up-and-go test (TUGT) were performed to assess ambulatory function. The physiological outcomes of interest after exoskeleton-assisted walking training were spasticity, pulmonary function, bone mineral density, colon transit time, and serum inflammatory markers. Effects of walking training on subjective outcomes were estimated by the Korean version of the Falls Efficacy Scale—International and the 36-Item Short-Form Health Survey version 2.ResultsTen participants finished 30 sessions of training and could ambulate independently. No severe adverse events were reported during the study. After training, the mean distance walked in the 6MWT (49.13 m) was significantly enhanced compared with baseline (20.65 m). The results of the TUGT also indicated a statistically significant improvement in the times required to stand up, walk 3 m and sit down. Although not statistically significant, clinically meaningful changes in some secondary physiological outcomes and/or quality of life were reported in some participants.ConclusionIn conclusion, this study demonstrated that the newly developed wearable exoskeleton, H-MEX is safe and feasible for non-ambulatory SCI patients, and may have potential to improve quality of life of patients by assisting bipedal ambulation. These results suggest that the H-MEX can be considered a beneficial device for chronic non-ambulatory SCI patients.Trial RegistrationClinicalTrials.gov Identifier: NCT04055610

Validity and Reliability of Korean Version of the Self-Efficacy for Managing Chronic Disease 6-Item Scale

The aim of this study was to examine the validity and reliability of the Korean version of the self-efficacy for managing chronic disease 6-item scale (SECD-6-K). The English version of the Self-Efficacy for Managing Chronic Disease 6-item Scale first underwent forward and backward translation procedures. The SECD-6-K was then used to collect data from 350 adults diagnosed with chronic diseases. Content, construct, convergent, discriminant, and criterion validity were all evaluated. Reliability was assessed using Cronbach's α. SPSS 25.0 and the data were analyzed using AMOS 26.0 software. The SECD-6-K consists of six items in two domains: disease management and health behavior. The results for construct, convergent, and discriminant validity were good. Exploratory factor analysis produced eigen values between 2.27 and 3.28, with factors total explained cumulative variance of 91.1%. Confirmatory factor analysis supported goodness of fit and reliability for the modified SECD-6-K model. The criterion validity also showed significant correlation with both the Patient Health Questionnaire and 12-item Short-Form Health Survey version 2. Finally, reliability was found to be excellent. This study identified the high reliability and validity of SECD-6-K. The SECD-6-K is an appropriate tool for determining Korean patients' self-efficacy in managing their chronic conditions. Therefore, this scale may be used in clinical settings as well as in educational and research settings.

Does pre-operative physical rehabilitation improve the functional outcomes of patients undergoing gastrointestinal cancer surgery?

[Purpose] This study aimed to evaluate the effectiveness of pre-operative physical rehabilitation on the postoperative course of the patients with gastrointestinal cancer undergoing surgery. [Participants and Methods] A rehabilitation physician examined and educated 33 patients (42% of whom were male with a mean age of 65.2 ± 10.9 years) who were scheduled to undergo elective surgery for gastrointestinal cancer. They received instructions for performing exercise from a physical therapist 17.0 ± 7.3 days prior to surgery. We divided the participants into three groups (improvement, maintenance, and deterioration) based on the changes in their ability to walk prior to surgery. This study compared the results of the 6-min walk test, hospital anxiety and depression scale, and 36-Item Short-Form Health Survey version 2 for the three groups at baseline, following rehabilitation prior to surgery, and 4 weeks following surgery. [Results] In the improvement group, the decrease in the ability to walk between the baseline and 4 weeks after surgery was not significant. Conversely, the deterioration group exhibited a significant decrease in the ability to walk 4 weeks after surgery. [Conclusion] Improvement in walking ability by rehabilitation training prior to surgery leads to the preservation of physical function in the patients with gastrointestinal cancer undergoing surgery.

Trajectories of Health Changes in Older Adults with Chronic Hepatitis B Infection

Despite the increasing burden of chronic hepatitis B (CHB) in aging populations, little is known about the course of health-related quality of life (HRQoL) changes during older adulthood in CHB patients. We aimed to assess individual-level longitudinal HRQoL changes in older patients with CHB and to examine their correlates. A 5-year prospective cohort study was conducted in 503 hepatitis B surface antigen-positive community-dwelling adults aged 55 years or older. Participants underwent comprehensive assessments at baseline and serial measurement of HRQoL using the short-form (12) health survey version 2. Of these participants, 82.7% remained in good physical health throughout the study period, whereas 9.1% had declining physical health and 8.2% were in poor physical health. We likewise identified three trajectories of mental health changes (“good mental health” [86.9%], “declining mental health” [6.8%], and “poor mental health” [6.4%]). Three baseline characteristics were independently associated with a lower likelihood of remaining physically or mentally healthy during older adulthood: sarcopenic obesity (odds ratio [OR] with 95% confidence interval [95% CI] of 7.5[2.8-20.5] for poor physical health, 3.1 [1.1-8.4] for declining physical health, 4.3 [1.4-13.0] for poor mental health), higher number of metabolic abnormalities (OR [95% CI] of 3.6 [1.6-8.0] for poor physical health) and depressed mood (OR [95% CI] of 21.7 [5.8-81.0] for poor physical health, 5.3 [1.4-19.9] for declining physical health, 83.1 [19.7-350.2] for poor mental health, 13.6 [2.9-64.8] for declining mental health). In conclusion, we demonstrated the heterogeneity and nonlinearity of HRQoL changes and their associations with variations in specific extrahepatic organs/systems.

Should 15° of valgus coronal-plane deformity be the upper limit for a total ankle arthroplasty?

Preoperative talar valgus deformity ≥ 15° is considered a contraindication for total ankle arthroplasty (TAA). We compared operative procedures and clinical outcomes of TAA in patients with talar valgus deformity ≥ 15° and < 15°. A matched cohort of patients similar for demographics and components used but differing in preoperative coronal-plane tibiotalar valgus deformity ≥ 15° (valgus, n = 50; 52% male, mean age 65.8 years (SD 10.3), mean body mass index (BMI) 29.4 (SD 5.2)) or < 15° (control, n = 50; 58% male, mean age 65.6 years (SD 9.8), mean BMI 28.7 (SD 4.2)), underwent TAA by one surgeon. Preoperative and postoperative radiographs, Ankle Osteoarthritis Scale (AOS) pain and disability and 36-item Short Form Health Survey (SF-36) version 2 scores were collected prospectively. Ancillary procedures, secondary procedures, and complications were recorded. At mean 5.1 years follow-up (SD 2.6) (valgus) and 6.6 years (SD 3.3) (controls), mean AOS scores decreased and SF-36 scores increased significantly in both groups. Improvements in scores were similar for both groups - AOS pain: valgus, mean 26.2 points (SD 24.2), controls, mean 22.3 points (SD 26.4); AOS disability: valgus, mean 41.2 points (SD 25.6); controls, mean 34.6 points (SD 24.3); and SF-36 PCS: valgus, mean 9.1 points (SD 14.1), controls, mean 7.4 points (SD 9.8). Valgus ankles underwent more ancillary procedures during TAA (40 (80%) vs 13 (26%)) and more secondary procedures postoperatively (18 (36%) vs 7 (14%)) than controls. Tibiotalar deformity improved significantly (p < 0.001) towards a normal weightbearing axis in valgus ankles. Three valgus and four control ankles required subsequent fusion, including two for deep infections (one in each group). Satisfactory mid-term results were achieved in patients with preoperative valgus malalignment ≥ 15°, but they required more adjunctive procedures during and after TAA. Valgus coronal-plane deformity ≥ 15° is not an absolute contraindication for TAA if associated deformities are addressed. Cite this article: Bone Joint J 2020;102-B(12):1689-1696.

Long-term outcomes of psychoactive drug use in trauma patients: A multicenter patient-reported outcomes study.

Psychoactive drug use (PDU) is reported in up to 40% of trauma patients and is associated with a higher rate of in-hospital complications. However, little is known about its long-term impact on trauma patients. We aimed to assess the long-term functional, mental, and psychosocial outcomes of PDU in trauma patients 6 to 12 months after injury. Trauma patients with moderate to severe injuries (Injury Severity Score, >9) who had a toxicology screen upon admission to one of three level 1 trauma centers were contacted by phone 6 to 12 months postinjury. Psychoactive drug use was defined as the presence of a psychoactive, nonprescribed substance on toxicology screen including amphetamine, barbiturate, benzodiazepine, cannabinoid, methamphetamine, methadone, opioid, oxycodone, methylenedioxymethamphetamine (ecstasy), phencyclidine, tricyclic antidepressant, and cocaine. The interviews systematically evaluated functional limitations, social functioning, chronic pain, and mental health (posttraumatic stress disorder, depression, anxiety). Patients with a score of ≤47 on the Short-Form Health Survey version 2.0 social functioning subdomain were considered to have social dysfunction. Multivariable regression models were built to determine the independent association between PDU and long-term outcomes. Of the 1,699 eligible patients, 571 (34%) were included in the analysis, and 173 (30.3%) screened positive for PDU on admission. Patients with PDU were younger (median age [interquartile range], 43 [28-55] years vs. 66 [46-78] years, p < 0.001), had more penetrating injuries (8.7% vs. 4.3%, p = 0.036), and were less likely to have received a college education (41.3% vs. 54.5%, p = 0.004). After adjusting for patients' characteristics including the presence of a baseline psychiatric comorbidity, patients with PDU on admission were more likely to suffer from daily chronic pain, mental health disorders, and social dysfunction 6 to 12 months after injury. There was no difference in the functional limitations between patients with and without PDU. On the long term, PDU in trauma patients is strongly and independently associated with worse mental health, more chronic pain, and severe impairment in social functioning. A trauma hospitalization presents an opportunity to identify patients at risk and to mitigate the long-term impact of PDU on recovery. Prognostic/epidemiologic, level III.

Improved quality of life of patients with generalized pustular psoriasis in Japan: A cross-sectional survey.

Generalized pustular psoriasis (GPP) is a rare variant of psoriasis with severe clinical symptoms. However, the quality of life (QoL) of the patients is largely unknown. We conducted a nationwide cross‐sectional survey of Japanese GPP patients using the 36‐Item Short‐Form Health Survey version 2 (SF‐36v2) to elucidate patients’ QoL and how their QoL had changed over the last decade. We analyzed QoL data of 83 patients obtained from 2016 to 2019 (present group) and compared it with that of 105 patients collected in a previous survey conducted between 2003 and 2007 (past group). Although the QoL of the present patients was still largely impaired in comparison with the standard Japanese population, substantial improvement was found in some SF‐36v2 subscales including “general health”, “vitality”, “social functioning” and “mental health” as compared with that of the past group. Advances in treatment may contribute to this QoL improvement.

Qualitative Findings on the Impact of Disease in Epstein-Barr Virus-Driven Post-Transplant Lymphoproliferative Disease Patients, as Measured by EQ-5D, SF-36, and the FACT-LYM.

IntroductionThere are no validated patient-reported outcome (PRO) instruments for Epstein–Barr virus-driven post-transplant lymphoproliferative disease (EBV+ PTLD). The aim of this study was to assess the content applicability for three frequently used PRO instruments from the perspective of patients with EBV+ PTLD.MethodsA moderated focus group comprising adult patients with EBV+ PTLD was conducted using a concept confirmation and an open-ended concept elicitation approach. The domains of the EuroQoL Group-5 Dimension (EQ-5D) instrument, Short Form Health Survey-Version 2 (SF-36v2) questionnaire, and Functional Assessment of Chronic Illness Therapy–Lymphoma (FACT-LYM) questionnaire were discussed. The concept elicitation portion was a general discussion of symptoms and patient burden of EBV+ PTLD.ResultsSix patients participated in this study: five women and one man. Most participants reported acute pain in the location of their EBV+ PTLD. All participants reported significant physical fatigue and experienced productivity loss. Patients reported emotional fatigue, feelings of dissociation, lack of motivation, and persistent fear of disease progression, including mortality. Patients described their social functioning as disjointed, behaving differently with loved ones/caregivers than when alone. The EQ-5D was relevant for the pain/discomfort and anxiety/depression domains; most SF-36v2 domains were relevant, with the exception of the general health perception domain, which was not applicable; all domains in the FACT-LYM were relevant. The open-ended portion drew no new content.ConclusionsThis qualitative research identified meaningful concepts in patients with EBV+ PTLD, with physical, emotional, and social functioning being impacted. The FACT-LYM questionnaire was the most relevant of the three PROs studied, with all domains relevant to this population. It is important to properly analyze PRO data in patients with EBV+ PTLD.

Factors influencing quality of life of Asian breast cancer patients and their caregivers at diagnosis: perceived medical and psychosocial needs.

We aimed to examine the relative importance of medical and psychosocial needs of Asian breast cancer patients and their caregivers, and to identify the determinants of quality of life (QoL) at the time of diagnosis. This is a prospective observational study of the perceived needs and QoL of 99 dyads of breast cancer patients and their caregivers at diagnosis. A self-administered questionnaire was used to measure the perceived importance of medical and psychosocial support needs. Short Form-36 health survey (SF-36) version 2 was used to measure QoL. We also collected patient and caregiver demographic profiles and disease-specific information. Descriptive analysis of perceived needs was performed. SF-36 scores for eight domains and composite scores were calculated. Bivariate analysis and linear regression were performed to identify significant independent predictors of QoL of patients and caregivers. The mean ages of the patients and caregivers were 56.5 years and 51.7 years, respectively. To have family around (73%), prompt information about treatment and treatment options, including side effects (71%), and prompt treatment for side effects (71%) were the top three needs among patients and their caregivers. Supportive nurses and prompt treatment for side effects positively improved patients' social functioning and bodily pain scores. Stage of disease, age, education and ethnicity also influenced QoL. Only the presence of chronic disease influenced caregivers' physical functioning and role-physical scores. Patients and caregivers have similar perceptions of needs at diagnosis. A supportive healthcare team can positively influence patients' QoL, highlighting the importance of tailoring support according to needs.

The Mediator Effects of Depressive Symptoms on the Relationship between Family Functioning and Quality of Life in Caregivers of Patients with Heart Failure

BackgroundCaregivers of patients with heart failure (HF) report depressive symptoms and poor quality of life (QOL) related to caregiving and poor family functioning, placing them at risk for poor health. ObjectivesThe purpose of this study was to examine the effect of depressive symptoms on the relationship between family functioning and quality of life in the HF caregiver. MethodsA sample of 92 HF caregivers were enrolled from an ambulatory clinic at a large academic medical center. A mediation analysis was used to analyze data obtained from the Family Assessment Device (FAD), the Patient Health Questionaire-9 (PHQ-9), and the Short Form-12 Health Survey Version 2 (SF-12v2). ResultsDepressive symptoms were found to be a significant mediator in the relationship between family functioning and caregiver quality of life. ConclusionsThe results of this study suggest that interventions targeting caregiver depression and family functioning could be effective in enhancing HF caregivers’ physical and mental QOL.

Validation of Global Self-Rated Health and Happiness Measures Among Older People in the Yilan Study, Taiwan.

Background: Single-item measures of physical and mental health are feasible for older adults, but their validity for that age group is unclear. This study tested validity of a global self-rated health and a global self-rated happiness measure in a large sample of community-dwelling older adults in Taiwan.Methods: A cross-sectional sample of 3,982 men and women aged 65 or older in Yilan, Taiwan, provided data on global self-rated health and happiness using 100-point numerical scales. The Physical Component Summary of the 12-Item Short Form Health Survey (version 2) and the Groningen Activity Restriction Scale were used to test the validity of the self-rated health item. The Mental Component of that 12-item scale and the Hospital Anxiety and Depression Scale were validators regarding the self-rated happiness item. Criterion validity was tested using the 12-Item Short Form Health Survey (version 2).Results: The correlations between the self-rated health and happiness measures and the 12-Item Short Form Health Survey (version 2) validators were positive and statistically significant, supporting convergent validity. Sufficient divergent validity was demonstrated through the negative and significant relationship between the self-rated health item and the Groningen Activity Restriction Scale scores and the negative and significant relationship between the self-rated happiness item and the Hospital Anxiety and Depression Scale. Optimal cut-off scores for physical and mental health states depended on age and gender.Conclusion: The global self-rated health and happiness measures were validated. Cut-off scores for evaluating older adults' physical and mental health should be age- and gender-specific.

A study on the effectiveness of pharmacopuncture for chronic neck pain

Neck pain is a common musculoskeletal disorder that impacts individuals' daily life, and might sometimes lead to disability and increased medical costs. Pharmacopuncture combines acupuncture with herbal medicine, in which herbal extracts are administered on the acupoints. We designed a pragmatic randomized controlled trial (RCT) to compare the effectiveness of pharmacopuncture and physical therapy as a treatment for chronic neck pain. This study is a 2-armed, parallel, multi-center RCT. The participants will be randomly assigned to pharmacopuncture or physical therapy group to receive their respective 8-session treatments for 4 weeks. The primary outcome is the visual analogue scale of neck pain. Secondary outcomes is the Northwick Park questionnaire, visual analogue scale of radiating arm pain, numeric rating scale of the neck and arm bothersomeness, neck disability index, patient global impression of change, short form-12 health survey version 2, and 5-level EuroQol-5 dimension. This is a protocol for a pragmatic RCT that would attempt to present evidence conducive to clinical decision or policy-making by investigating the effectiveness of pharmacopuncture therapy, a widely used approach in Korean medicine clinical practice, in comparison to the standard therapy.

The comparison of health-related quality of life and patient satisfaction between single-incision and multiport laparoscopic colectomy for cancer: A sub-study of a randomized, prospective clinical trial.

AimThe present study clarified the effect on the health‐related quality of life and patient satisfaction of single‐incision laparoscopic colectomy compared with multiport laparoscopic colectomy for colorectal cancer.MethodsWe conducted a multicenter, randomized, control trial comparing single‐incision and multiport laparoscopic colectomy for colon cancer. We performed a pre‐planned secondary analysis of health‐related quality of life and patient satisfaction data of 200 patients. Health‐related quality of life was evaluated using the Japanese 36‐item Short Form Health Survey (SF‐36) version 2.0 before surgery and at 1 month after surgery. Patient satisfaction was compared using seven questionnaires at 1 month after surgery.ResultsOne hundred patients were assigned to each group. After excluding 18 patients (9.0%) who did not complete the SF‐36, 182 patients (91.0%) were included in the analysis (92 cases of single‐incision laparoscopic colectomy and 90 cases of multiport laparoscopic colectomy). The SF‐36 scores at 1 month after surgery were not significantly different between the two arms. The role physical, bodily pain, vitality and physical component summary were significantly lower at 1 month after surgery than before in both groups. However, the role emotional was significantly lower after surgery than before only in the single‐incision laparoscopic colectomy group. In terms of patient satisfaction at 1 month after surgery, there were no significant differences in any of the seven items on the questionnaire.ConclusionsSingle‐incision laparoscopic colectomy was similar to multiport laparoscopic colectomy in terms of health‐related quality of life and patient satisfaction. However, single‐incision laparoscopic colectomy may be inferior than multiport laparoscopic colectomy in terms of the role emotional.

Burden of Illness in Adults With Hypophosphatasia: Data From the Global Hypophosphatasia Patient Registry.

Hypophosphatasia (HPP) is a rare, inherited, metabolic disease caused by deficient tissue non-specific alkaline phosphatase activity. This study aims to assess patient-reported pain, disability and health-related quality of life (HRQoL) in a real-world cohort of adults with HPP who were not receiving asfotase alfa during the analysis. Adults (≥18 years old) with HPP (confirmed by ALPL gene mutation and/or low serum alkaline phosphatase activity for age/sex) were identified from the Global HPP Registry (NCT02306720). Demographics, clinical characteristics, and data on patient-reported pain, disability, and HRQoL (assessed by Brief Pain Inventory Short Form [BPI-SF], Health Assessment Questionnaire Disability Index [HAQ-DI], and 36-Item Short-Form Health Survey version 2 [SF-36v2], respectively) were stratified by pediatric- and adult-onset HPP and summarized descriptively. Of the 304 adults included (median [min, max] age 48.6 [18.8, 79.8] years; 74% women), 45% had adult-onset HPP and 33% had pediatric-onset HPP (unknown age of onset, 22%). Of those with data, 38% had experienced ≥5 HPP manifestations and 62% had a history of ≥1 fracture/pseudofracture. Median (Q1, Q3) BPI-SF scores were 3.5 (1.5, 5.3) for pain severity and 3.3 (0.9, 6.2) for pain interference. Median (Q1, Q3) disability on the HAQ-DI was 0.3 (0.0, 0.7). Median (Q1, Q3) physical and mental component summary scores on the SF-36v2 were 42.4 (32.7, 49.9) and 45.3 (36.3, 54.8), respectively. Greater numbers of HPP manifestations experienced/body systems affected correlated significantly with poorer scores on the BPI-SF, HAQ-DI, and SF-36v2 (all p < 0.05). No significant differences between adults with pediatric- and adult-onset HPP were observed for patient-reported outcomes, except for disability and the BPI-SF question "pain at its worst," which were significantly higher among adults with pediatric- versus adult-onset HPP (p = 0.03 and 0.04, respectively). These data from the Global HPP Registry show that adults with HPP have a substantial burden of illness that is associated with reduced patient-reported HRQoL, regardless of age of disease onset. © 2020 The Authors. Journal of Bone and Mineral Research published by Wiley Periodicals LLC on behalf of American Society for Bone and Mineral Research (ASBMR).

Does health-related quality of life in Asian informal caregivers differ between early-onset dementia and late-onset dementia?

Early-onset dementia (EOD) (defined as dementia onset before age 65) presents specific challenges and issues, adding to the negative impact of dementia on the health-related quality of life (HRQOL) of both patients and their caregivers. However, very few published studies have specifically compared the HRQOL of caregivers of people with EOD and late-onset dementia (LOD). This information is critical in allocating and prioritizing scarce health-care resources. We aimed to assess the HRQOL of primary informal caregivers of community-dwelling individuals with EOD in Singapore and compare it with that of caregivers of individuals with LOD. This was a cross-sectional study of consecutive patient-caregiver dyads from a tertiary dementia clinic. No significant differences in disease severity were found between the 111 EOD and 235 LOD patient-caregiver dyads. The mean Mental Component Summary score of the 36-item Short-Form Health Survey version 2 was significantly worse in caregivers of EOD patients than in LOD caregivers (mean: 41.42 vs 45.12, P = 0.001), although the mean Physical Component Summary scores were comparable (49.71 vs 49.53, P = 0.934). However, the impact of dementia early onset on caregivers' mental health diminished immediately after adjustment for the disease severity indicators, of which the Neuropsychiatric Inventory Questionnaire distress score was the only significant clinical factor (regression coefficient β = -0.29, P < 0.001). The amount of variability in the HRQOL of the caregivers explained by patient and caregiver factors across all the models was rather small (adjusted R2 = 19.3% for the Mental Composite Score, 5.2% for Physical Composite Score). Caregivers of EOD patients had worse mental health than LOD caregivers probably because individual with EOD have more behavioural disturbances. This reinforces the indispensable role of managing behavioural problems when caring for a family member with dementia, especially for EOD. HRQOL ideally needs to be assessed based on self-report rather than inferences from indirect data such as the subjective caregiver burden.

Exploring health-related quality of life and frailty in older adults based on the Korean Frailty and Aging Cohort Study.

The study aimed to analyze the association between frailty and health-related quality of life (HRQOL) based on the Korean Frailty and Aging Cohort Study. In this cross-sectional study, 2905 adults aged 70 to 84years were enrolled. Frailty was determined according to the Fried frailty index. HRQOL was measured using the 5-level EuroQol questionnaire (EQ-5D-5L) and the 12-item Short-Form Health Survey version 2 (SF-12). Hierarchical linear regressions were conducted to examine the relationship between frailty and HRQOL and a logistic regression analysis was performed to estimate odds ratios of frailty status in the scores of the lowest quartiles in each scale. Of the total respondents, 7.8% were frail, 47.0% were pre-frail, and 45.2% were robust. Frail respondents had significantly lower HRQOL scores than robust respondents, especially for EQ-5D-5L utility weights (0.74 vs 0.93). Frailty was strongly associated with decreased HRQOL in both physical and mental component summary of SF-12 (p < 0.001). Both pre-frail and frail states were related to greater odds of scoring in the bottom 25% of HRQOL scales compared to the non-frail state (p < 0.0001). Frailty was associated with declined HRQOL in Korean older adults. This result recommends raising awareness about identifying and preventing frailty for better quality of life in the Korean elderly population.