In-Hospital Death and End-of-Life Status Among Patients With Adult Congenital Heart Disease　- A Retrospective Study Using the JROAD-DPC Database in Japan.

BACKGROUND: The end-of-life (EOL) status, including age at death and treatment details, of patients with adult congenital heart disease (ACHD) remains unclear. This study investigated the EOL status of patients with ACHD using a nationwide Japanese database.Methods and Results: Data on the last hospitalization of 26,438 patients with ACHD aged ≥15 years, admitted between 2013 and 2017, were included. Disease complexity (simple, moderate, or great) was classified using International Classification of Diseases, 10th Revision codes. Of the 853 deaths, 831 patients with classifiable disease complexity were evaluated for EOL status. The median age at death of patients in the simple, moderate, and great disease complexity groups was 77.0, 66.5, and 39.0 years , respectively. The treatments administered before death to patients in the simple, moderate, and great complexity groups included cardiopulmonary resuscitation (30.1%, 35.7%, and 41.9%, respectively), percutaneous cardiopulmonary support (7.2%, 16.5%, and 16.3%, respectively), and mechanical ventilation (58.7%, 72.2%, and 75.6%, respectively). Overall, 70% of patients died outside of specialized facilities, with >25% dying after ≥31 days of hospitalization. CONCLUSIONS: Nationwide data showed that patients with ACHD with greater disease complexity died at a younger age and underwent more invasive treatments before death, with many dying after ≥1 month of hospitalization. Discussing EOL options with patients at the appropriate time is important, particularly for patients with greater disease complexity.

Somatic Changes Perceived by Patients With Heart Failure During Acute Exacerbation: A Qualitative Study Using Text Mining.

BACKGROUND: Patients with heart failure (HF) often inadequately perceive their symptoms. This may be because the medical terms do not match the somatic changes experienced by patients. To improve symptom perception, healthcare professionals must understand the somatic changes as perceived by patients. OBJECTIVE: This study aims to analyze patients' narratives about somatic changes in patients with HF by text mining and to clarify the overall description of somatic changes using patients' expressions. METHODS: Semistructured interviews were conducted on 21 patients hospitalized for acute exacerbation of HF. Qualitative data obtained from the interviews were analyzed by content analysis through text mining. RESULTS: Among the 21 patients, 76.2% were men. The mean (SD) age was 71.3 (13.7) years. The most frequently used terms were "breath," "distressed," "feet," and " ha-ha (gasping sound)" (46, 40, 29, and 28 times, respectively). The somatic changes noticed by patients could be categorized into medical jargon such as "dyspnea on exertion," "exercise intolerance," "fatigue," "paroxysmal nocturnal dyspnea," "frequent urination," "increased sputum," "weight gain," "feet and face edema," "abdominal edema," and "ankle edema." However, the expressions of somatic changes used by the patients were diverse. CONCLUSIONS: The findings of patient-specific expressions of symptoms suggest that there is a need to assess symptoms not only using medical jargon but also by focusing on patient-specific expressions.

Content validity of the Japanese version of the health literacy and resiliency scale for youth with chronic illness.

Health literacy, which is the ability to find, understand, and use information as well as services to make informed health-related decisions and actions, is essential for ensuring that youths with chronic diseases adapt to and live with their illnesses. However, in Japan, an appropriate approach for measuring health literacy levels among children is yet to be developed. The Health Literacy and Resiliency Scale for Youth (HLRS-Y) was developed by Kathy Bradley-Klug and her colleagues to assess health literacy, resiliency, and self-advocacy/support among youths aged between 13 and 21 years with chronic illnesses in the United States of America (United States). In this study, we aimed to develop a Japanese version of the HLRS-Y and evaluate its content validity. After receiving approvals from the original authors, four nurse researchers with expertise in pediatric nursing translated the scale into Japanese (forward translation). Afterwards, the appropriateness of each expression was examined by a pediatrician. Next, an English native speaker translated the expressions into English (back-translation). We reported the back-translated version of the scale to the original authors to confirm its accuracy. The scale's content validity index (CVI) was evaluated by health professionals working in the fields of pediatric, transitional, and adult health care. The participants rated the items using a four-point scale. Each item was evaluated for a minimum item-level content validity index (I-CVI) value of 0.78. The scale's total and subscale validities were evaluated using a minimum scale-level content validity index based on an average (S-CVI/Ave) value of 0.90. Eleven participants responded to an online survey for evaluating content validity. Of the 36 items, 34 met the I-CVI criteria. Two items did not exceed the criteria's value, but they approximated it. The values of the S-CVI/Ave were 0.96, thereby satisfying the criteria's requirements. Based on the results, it was confirmed that the Japanese version of the HLRS-Y had good content validity. Future studies should examine the factor validity, known group validity, and reliability of this scale.

Efficacious interventions for improving the transition readiness of adolescents and young adult patients with chronic illness: A narrative review of randomized control trials assessed with the transition readiness assessment questionnaire.

Objective: We inspected efficacious interventions to improve the transition readiness of adolescent and young adult patients with childhood-onset chronic illnesses using the Transition Readiness Assessment Questionnaire (TRAQ). Methods: Our narrative review was conducted on randomized control studies assessed with TRAQ for outcome measurement before and after the interventions. We included all patients with chronic diseases. We searched eight electronic database(s): Allied and Complementary Medicine Database (AMED) Allied and Complementary Medicine, BioSciences Information Service of Biological Abstracts (BIOSIS) Previews, Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Library, Embase, Ichu-shi, Medline, and Web of Science. The text words for the search of data sources were as follows: "("transition readiness assessment questionnaire" OR TRAQ) AND 2011/01:2022/06[DP] AND (clinical AND trial OR clinical trials OR clinical trial OR random* OR random allocation)." More studies were identified from the references in our reported study. This data set was independently cross-checked by two reviewers. Results: We identified 261 reports and collected three articles. The target diseases were type-1 diabetes, congenital heart disease, cystic fibrosis, and inflammatory bowel disease. All the studies excluded patients with intellectual disabilities. The age of the participants was distributed between 12 and 20 years. Nurse-provided web-based intervention of transition readiness was constructed using digital resources in two studies. The intervention ranged from 6 to 18 months. All the interventions were efficacious in improving transition readiness assessed with TRAQ scores, except for the self-advocacy score. Conclusions: We obtained three randomized control studies with TRAQ for outcome measurement. In two studies, web-based and nurse-led organized interventions were shown to improve transition readiness.

Hospital Support for Siblings of Children With Illness in Japan.

Recent years have seen increased attention to the needs and support of siblings of children with chronic illness, and reports of intervention studies on siblings are gradually increasing worldwide. In Japan, the basic policy approved by the Cabinet in 2021 of The Basic Law for Child and Maternal Health and Development stipulates promoting support for the siblings of children with chronic illness, medical care, and disabilities. Simultaneously, practical reports are emerging. However, reports on the actual state of sibling support at medical institutions in Japan are limited. This study aimed to describe the actual state of support for siblings of children with illness in Japanese medical institutions using a cross-sectional design. Responses were obtained from 207 of 484 registered training facilities for Board-Certified Pediatricians of the Japan Pediatric Society through anonymous questionnaires investigating the actual state of siblings' support. Descriptive statistics were calculated, and the state of siblings' support was described. Fifty-two participants (25.1%) answered that the entire ward, including two outpatient departments, provided siblings' support, while 37 (17.9%) answered some staff made an effort, and 117 (56.5%) did not. Support mentioned included conversing with siblings, actively speaking to siblings, calling siblings' names, and counseling care through the parents. Of the 45 cases (21.7%) where siblings were invited to events and gatherings, 10 (22.2%) were siblings-centered events. Some cases involved collaboration with local sibling support groups such as non-profit organizations. This study clarified the actual state of siblings' support, and further expansion of this support is required.

Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease　- Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease.

Background: Disease understanding in patients with congenital heart disease is important in transitional and lifelong care. This study aimed to develop the Japanese version of the Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) and identify factors associated with disease-related knowledge. Methods and Results: After confirming the content and face validity of the scale, a questionnaire including the LKQCHD was distributed to 59 eligible patients aged >16 years attending a university hospital. For the 58 participants who responded (30 males, 28 females; median age 22 years), the mean (±SD) LKQCHD total score was 53.7±15.4, with mean (±SD) scores for each domain as follows: Disease and Treatment, 68.3±19.7; Preventing Complications, 45.8±19.0; Physical Activity, 74.1±34.1; Sex and Heredity, 37.9±35.4; and Contraception and Pregnancy, 40.2±29.1. Regarding known-groups validity, we found a positive correlation between the LKQCHD score and age (ρ=0.268, P=0.042), and a significantly low LKQCHD score in the moderate/severe disease group (η2=0.131, P=0.021). Regarding convergent validity, the LKQCHD score was positively correlated with the total and subscale scores of the Resilience Assessment Tool (r=0.213 [P=0.109] and r=0.405 [P=0.002], respectively). Conclusions: We confirmed the validity of the Japanese version of the LKQCHD, concluding that patient education regarding long-term complications, prevention methods, heredity, pregnancy, and childbirth is needed.

Characteristics of patients with adult congenital heart disease treated by non-specialized doctors: The potential loss of follow-up.

BACKGROUND: In the treatment of adult congenital heart disease (ACHD), the transfer of patients from pediatric cardiologists to ACHD cardiologists is of relevance. However, little is known about the clinical courses of ACHD patients that have been referred by non-CHD-specialized doctors (n-CSDs). METHODS: This retrospective cohort study included 230 patients (average age: 37 ± 15.2 years, male: 97) who were referred to a single specialized ACHD center between April 2016 and July 2019. We compared the characteristics and clinical courses between patients referred by n-CSDs and those referred by CHD-specialized-doctors (CSDs). RESULTS: Overall, 121 (53%) patients were referred by n-CSDs. Among them, 91 (75%) patients were referred by adult cardiologists. Univariate analysis showed that the patients referred by n-CSDs were older than those referred by CSDs (41.6 ± 16.3 vs. 32.0 ± 12.0 years, p < 0.01), were more likely to have simple CHD, and less likely to have severe CHD (27.0% vs. 12.8% and 16.5% vs. 40.4%, respectively, p < 0.01). Patients referred by n-CSDs were also more likely to have a history of loss of follow-up (16.5% vs. 3.7%, p < 0.01) and to require invasive treatments after referral, including cardiac surgeries and transcatheter interventions (47.9% vs. 26.6 %, p < 0.01). Notably, unintended invasive treatments that were not designated by the referring doctors were more frequently required in patients with moderate complexity referred by n-CSDs (50.0% vs. 23.3%, p = 0.02). CONCLUSIONS: Patients with moderate CHD complexity referred by n-CSDs are more likely to require unintended invasive treatments. Referrals to specialized ACHD centers may be most beneficial for these patients.

Gender differences in HIV testing service visits and its related factors among adults: a cross-sectional study in Homa Bay, Kenya.

INTRODUCTION: at least 90% of people living with human immunodeficiency virus (HIV) were expected to know their HIV status by 2020. However, only 84% are aware of their status. This study determined the frequency of HIV testing services visits (HTS) and its related factors to HTS visits among adults in Homa Bay County, Kenya. METHODS: this was a cross-sectional study. Quantitative and qualitative data were collected. A backward stepwise logistic regression analysis was conducted for quantitative data by gender. Qualitative data were thematically categorised into factors of HTS visits by gender. RESULTS: a total of 645 adults participated in quantitative survey and 17 in qualitative survey. There were no gender differences in the frequency of HTS visits (males=56.3%; females= 58.7%, P=0.785). The frequency of visits was however significantly different between the rural-based (Rachuonyo North=87.5%; Ndhiwa=58.7%) and urban-based (Homa Bay Town=36.8%) facilities at P<0.001. In males, HTS visits were positively associated with ´being in Protestant church´, ´partner´s attitude´, and ´being accompanied by a friend to HTS´. ´Distance to HTS´ was negatively associated with HTS visits in males. For females, 'sexual intercourse in the past 2-5 months´ was positively associated with HTS visits. ´Being in a polygamous marriage´, ´not married´, ´community HIV testing´, and ´affordability of transport cost to HTS centre´ were negatively associated with HTS visits. CONCLUSION: there were no gender differences in the frequency of HTS visits. Social position for males and position in the family for females are suggested as the factors influencing HTS visits in Homa Bay County.

Incidence and Prevalence of Infectious Diseases and Their Risk Factors among Patients Who Use Visiting Nursing Services in Japan.

This study aimed to clarify the incidence of infectious diseases and the associated risk factors among patients who use visiting nursing services in Japan. We conducted a one-year follow up cohort study with 419 participants. The incidence and period prevalence rate of infectious diseases were 0.63 and 15.0%, respectively. In the multiple logistic regression analysis, the presence of chronic respiratory failure, Parkinson's disease, dermatosis other than pressure ulcers, and the inability to perform oral self-care were significantly related to the contraction of an infectious disease.

Perceptions of physicians and nurses concerning advanced care planning for patients with heart failure in Japan.

BACKGROUND: The importance of advance care planning (ACP) has been recognized in the palliative care of patients with heart failure. It is necessary for dissemination of ACP to characterize the perceptions of physicians and nurses towards ACP and to promote mutual understanding. The aim of this study is to investigate the perceptions of physicians and nurses concerning ACP for patients with heart failure. METHODS: We conducted a self-administered questionnaire survey with physicians and nurses who belonged to the 427 certified institutions for implantable cardioverter defibrillator (ICD) and/or cardiac resynchronization therapy (CRT) in Japan. The self-administered questionnaire was originally designed based on the guidelines on palliative care or ACP and previous studies on the barriers of ACP. We asked the participants the recognition about condition/timing to implement ACP, Content of care to be implemented in ACP, and barriers against implementing ACP. A Mann-Whitney U test was performed and r value was calculated an effect size (ES) in order to evaluate the characteristic perceptions among physicians and nurses. RESULTS: Valid responses were obtained from 163 physicians (38.2%) and 208 nurses (48.7%). Regarding the condition/timing, nurses tended to recognize that ACP should be implemented from earlier clinical stages than physicians. Regarding the contents of ACP, both physicians and nurses placed emphasis in assessing the patient's perception of disease progression. The biggest difference was found in the item "Ask patient about what has been important in life so far"; 78.6% of physicians but 94.2% of nurses chose "it must/should be implemented" (Cohen's r=0.31). Regarding the barriers, both physicians and nurses recognized the difficulty in prognosis prediction. The biggest differences were found in the items "Medical staff does not know how to implement ACP for patients and their families" (45.6% of physicians and 70.4% of nurses chose "strongly agree/agree", r=0.27), and "There is disagreement regarding care goals among team members of different professions" (18.5% in physicians and 43.3% in nurses, r=0.27). CONCLUSIONS: It is suggested that discussions and further studies are necessary concerning the condition/ timing of implementing ACP from early stages, specific manuals/protocols and recommendation on rolesharing within a multidisciplinary team.

Quality indicators of palliative care for acute cardiovascular diseases.

BACKGROUND: Although recent attention to palliative care for patients with cardiovascular diseases has been increasing, there are no specific recommendations on detailed palliative care practices. We proceed on a discussion of the appropriateness and applicability of potential quality indicators for acute cardiovascular diseases according to our previous systematic review. METHODS: We created a multidisciplinary panel of 20 team members and 7 external validation clinicians composed of clinical cardiologists, a nutritionist, a physiotherapist, a clinical psychologist, a critical and emergent care specialist, a catheterization specialist, a primary care specialist, a palliative care specialist, and nurses. After crafting potential indicators, we performed a Delphi rating, ranging from "1 = minimum" to "9 = maximum". The criterion for the adoption of candidate indicators was set at a total mean score of seven or more. Finally, we subcategorized these indicators into several domains by using exploratory factor analysis. RESULTS: Sixteen of the panel members (80%) were men (age, 49.5 ± 13.7 years old). Among the initial 32 indicators, consensus was initially reached on total 23 indicators (71.8%), which were then summarized into 21 measures by selecting relatively feasible time variations. The major domains were "symptom palliation" and "supporting the decision-making process". Factor analysis could not find optimal model. Narratively-developed seven sub-categories included "presence of palliative care team", "patient-family relationship", "multidisciplinary team approach", "policy of approaching patients", "symptom screening and management", "presence of ethical review board", "collecting and providing information for decision-maker", and "determination of treatment strategy and the sharing of the care team's decision". CONCLUSION: In this study we developed 21 quality indicators, which were categorized into 2 major domains and 7 sub-categories. These indicators might be useful for many healthcare providers in the initiation and enhancement of palliative care practices for acute cardiovascular diseases in Japan.

Impact of facilities accredited by both adult and pediatric cardiology societies on the outcome of patients with adult congenital heart disease.

BACKGROUND: The emerging burden and need of hospital admission due to adult congenital heart disease (ACHD) will need many facilities with expertise in ACHD. Regional specialized ACHD centers are carrying this increasing patient burden. Although these centers are considered to perform better management than other institutes, their impact on outcome has not been fully evaluated. METHODS: We used the Japanese Registry of All cardiac and vascular Diseases (JROAD) and the JROAD Diagnosis Procedure Combination (DPC)/Per Diem Payment System dataset and certification data. We only analyzed adult (≥15 years old) patients with ACHD, defined by the International Classification of Diseases, Tenth Revision, diagnosis codes, between April 1, 2013, and March 31, 2014. We defined a "minimal essential regional ACHD (MER-ACHD) center" as an education institute accredited by adult and pediatric cardiology societies. The primary outcome is 30-day mortality. We investigated the impact of MER-ACHD centers on 30-day mortality by using generalized estimating equations. RESULTS: Of the 538 hospitals registered at JROAD that agreed to participate in the DPC discharge database study, 65 (12.1%) were MER-ACHD centers. Of 4818 patients (46.8% male; age, 50.1±21.4 years), 45.5% were admitted to a MER-ACHD center. Nearly half (48.1%) of the admissions were cases of atrial septal defect, followed by ventricular septal defect, tetralogy of Fallot, and congenital insufficiency of the aortic valve or bicuspid aortic valve. Multivariate analysis revealed a negative impact of emergency admission [1.051 (1.042-1.061)] and a positive impact of MER-ACHD centers [0.986 (0.973-0.999)] on 30-day mortality after adjustment of disease severity. CONCLUSION: We noted the impact of MER-ACHD centers on 30-day mortality. Further investigation is needed to establish appropriate regional ACHD center criteria to deliver appropriate ACHD management.

Validation of the Japanese Transition Readiness Assessment Questionnaire.

BACKGROUND: For patients with childhood-onset chronic illnesses, the transition to adult care requires an understanding of transition readiness and the effectiveness of evaluation methods. However, no such psychometrically verified scales exist in Japan. This study aimed to develop a Japanese version of the Transition Readiness Assessment Questionnaire (TRAQ) and verify its validity and reliability. METHODS: The Japanese TRAQ was developed in accordance with international guidelines, followed by a preliminary survey to verify face validity among six participants who fulfilled the inclusion criteria. For the main survey 107 patients who fulfilled the same inclusion criteria were asked to complete the questionnaire and provide basic information. After descriptive statistics analysis, the construct validity of the Japanese TRAQ was tested using the t-test and Pearson's correlation coefficients. Cronbach's alpha coefficients were calculated to assess reliability. RESULTS: In the main survey, 76 participants with no missing data were included in the complete data analysis (40 males 36 females; mean age, 17.8 and 18.2 years, respectively). The mean total Japanese TRAQ score was 3.9. Cronbach's alpha coefficients were 0.94 overall and 0.8-0.96 for each of the four domains. The known-groups analysis revealed that older participants (r = 0.23, P = 0.044), those having knowledge of the disease name (yes [4.0] vs no [3.4]; P < 0.001), and making unaccompanied hospital visits (with parent/others [3.7] vs alone [4.4]; P < 0.001) had significantly higher total TRAQ scores. CONCLUSION: We confirmed preliminarily the validity and reliability of the Japanese TRAQ.

Preferences Regarding Transfer of Patients With Congenital Heart Disease Who Attend Children's Hospital.

BACKGROUND: The aim of this study was to determine preferences regarding transfer of patients with congenital heart disease (CHD) attending a children's hospital in Japan and related factors. Methods and Results: We conducted a self-administered questionnaire survey with CHD patients >15 years of age treated at the pediatric cardiology outpatient clinic of a children's hospital. Logistic regression analysis was used to identify factors related to patient preferences regarding the transfer. One hundred and eleven of the 122 patients given a questionnaire provided valid responses (valid response rate, 91.0%). Sixty-six subjects (64.9%) reported "not being told anything specific" by their physicians about the transfer from the children's hospital, and 72 (59.5%) stated that they "wished to continue attending the children's hospital". Visiting outpatient clinic with parents (OR, 11.00; 95% CI: 2.01-60.97), having low uncertainty about continuing to attend the children's hospital (OR, 0.95; 95% CI: 0.92-0.98), and having high uncertainty about leaving the current physician (OR, 1.04; 95% CI: 1.01-1.07) were significantly related to the patient's wish to continue to attend the children's hospital. CONCLUSIONS: There is a need to improve patient education regarding the opportunities for transfer, and to develop a systematic transition program for children's hospitals and aligned specialized adult CHD centers.

Social independence of adult congenital heart disease patients in Japan.

BACKGROUND: As treatment outcomes for congenital heart disease (CHD) have improved, the social independence of adult CHD patients has become a key goal. The aims of this study were therefore to (i) determine the relationship between social independence and psychological profile, and (ii) identify patient anxieties, difficulties, and demands related to life in society. METHODS: A total of 143 patients aged ≥15 years with physical disability certificates were selected using a questionnaire distributed by a patients' association. Each participant was asked about employment status, income, and receipt of disability pension as a social independence index, and about financial and psychological distress as a psychological status index. Furthermore, each participant was asked to freely describe his or her difficulties, anxieties, and needs pertaining to life in society. RESULTS: The subjects were 15-73 years old. Seventy-one (50%) were female, and 94 (66%) had a grade 1 physical disability certificate. Fifty-nine subjects (41%) were employed, 37 (26%) were unemployed, and 45 (31%) were students. Of those employed, 34 subjects (58%) reported annual individual income ≤2 million yen. Frequent hospital visits, low total household income, low individual annual income, work dissatisfaction, and receipt of a disability pension were associated with poorer psychological profile. In an open description section, subjects expressed desires for better pension systems, support for medical fees, and employment support. CONCLUSIONS: Because financial issues can adversely affect the psychological profiles of adult CHD patients, enhancement of social welfare and employment support may improve their social independence.

Qualitative analysis of clinical research coordinators' role in phase I cancer clinical trials.

BACKGROUND: Clinical research coordinators play a pivotal role in phase I cancer clinical trials. PURPOSE: We clarified the care coordination and practice for patients provided by clinical research coordinators in phase I cancer clinical trials in Japan and elucidated clinical research coordinators' perspective on patients' expectations and understanding of these trials. METHOD: Fifteen clinical research coordinators participated in semi-structured interviews regarding clinical practices; perceptions of patients' expectations; and the challenges that occur before, during, and after phase I cancer clinical trials. DISCUSSION: Qualitative content analysis showed that most clinical research coordinators observed that patients have high expectations from the trials. Most listened to patients to confirm patients' understanding and reflected on responses to maintain hope, but to avoid excessive expectations; clinical research coordinators considered avoiding unplanned endings; and they aimed to establish good relationships between patients, medical staff, and among the professional team. CONCLUSIONS: Clinical research coordinators were insightful about the needs of patients and took a meticulous approach to the phase I cancer clinical trial process, allowing time to connect with patients and to coordinate the inter-professional research team. Additionally, education in advanced oncology care was valuable for comforting participants in cancer clinical trials.

Reliability and validity of revised and short form versions of diabetes diet-related quality of life scale.

OBJECTIVE: To develop both a revised version of the Diabetes Diet-Related Quality of Life (DDRQOL-R) scale that can be applied to patients with nephropathy and a short form of the DDRQOL-R. METHOD: A total of 184 outpatients with type 2 diabetes were asked to complete the self-administered DDRQOL-R scale to confirm its psychometric properties. A short-form version was developed, based on two methods: the result of the developed DDRQOL-R scale and consensus using the Delphi method among medical experts. RESULTS: Correlations were generally strong between the DDRQOL-R factors extracted by factor analysis and each SF-36 subscale. Cronbach's α coefficients were at least 0.7, and intraclass correlation coefficients were between 0.59 and 0.78. The nine items that showed high factor loadings were also assessed as important by the medical experts and were selected for the short form of the scale. The reliability and validity of the short form were found to be similar to those of the DDRQOL-R scale. DISCUSSION: Our findings indicate that the DDRQOL-R scale and its short form have acceptable reliability and validity. The revised version is highly versatile, and the short form can be conveniently administered.