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Background The strength, assistance walking, rise from a chair, climb stairs, and falls (SARC‐F) questionnaire is a well‐established instrument for screening of sarcopenia and sarcopenia‐related functional impairments. As it is based on self‐reporting, its use precludes patients who are unable to answer the questionnaire as a consequence of severe acute diseases or cognitive impairment. Therefore, we aimed to validate a proxy‐reported version of the SARC‐F for both ad‐hoc as well as retrospective screening for severe sarcopenia‐related functional impairments. Methods Patients aged ≥60 years completed the SARC‐F and performed the short physical performance battery (SPPB) at baseline (T1). Proxies in Cohort A gave a simultaneous assessment of the patients' functional status with the proxy‐reported SARC‐F at T1 and again, retrospectively, after 3 months (T2). Proxies in Cohort B only completed the SARC‐F retrospectively at T2. The questionnaires' performances were assessed through sensitivity/specificity analyses and receiver operating characteristic (ROC) curves. For non‐inferiority analyses, results of both the patient‐reported and proxy‐reported SARC‐F were correlated with the SPPB total score as well as the results of the chair‐rise test subcategory; the respective correlation coefficients were tested against each other. Results One hundred and four patients and 135 proxies participated. Using a SPPB score < 9 points as the reference standard, the proxy‐reported SARC‐F identified patients at high risk for sarcopenia‐related functional impairment with a sensitivity of 0.81 (ad‐hoc), 0.88 (retrospective Cohort A), and 0.87 (retrospective Cohort B) as well as a specificity of 0.89 (ad‐hoc), 0.78 (retrospective Cohort A), and 0.64 (retrospective Cohort B). Areas under the ROC curves were ≥ 0.9 for the ad‐hoc proxy‐reported SARC‐F and the retrospective proxy‐reported SARC‐F in both cohorts. The proxy‐reported SARC‐F showed a non‐inferior correlation with the SPPB compared with the patient‐reported SARC‐F for ad‐hoc (P = <0.001) as well as retrospective screening for severe sarcopenia‐related functional impairment in both Cohorts A (P = 0.007) and B (P = 0.026). Conclusions Proxy‐reported SARC‐F is a valid instrument for both ad‐hoc as well as retrospective screening for sarcopenia‐related functional impairment and could become the standard tool for evaluating this risk in older adults with severe acute disease, for example, in patients with quickly evolving haematological conditions.

Aims Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations. Methods We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use. Results The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures. Discussion Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies. Systematic review registration PROSPERO No. CRD42018103179

Purpose Patient-reported outcome measures (PROMs) are widely used in medicine. As older adults, who may rely on a proxy caregiver for answers due to cognitive impairment, are representing an increasing share of the traumatically injured patient population, proxy-reported outcome measures (proxROMs) offer a valuable alternative source of patient-centered information although its association with PROMs is unclear. The objective of this scoping review is to discuss all available literature comparing PROM and proxROMs in adult patients with musculoskeletal trauma to guide future research in this field. Methods The PRISMA extension for Scoping Reviews was used to guide this review. MEDLINE, Embase, Web of Science, and the Cochrane Central Register of Controlled Trials were searched without date limit for articles comparing PROM and proxROMs in setting of musculoskeletal trauma. Abstract and full-text screening were performed by two independent reviewers. Variables included study details, patient and proxy characteristics, and reported findings on agreement between PROMs and proxROMs. Results Of 574 unique records screened, 13 were included. Patient and proxy characteristics varied greatly, while patients’ cognitive status and type of proxy perspective were poorly addressed. 18 different PROMs were evaluated, mostly reporting on physical functioning and disability (nine, 50%) or quality of life (six, 33%). Injury- and proxy-specific tools were rare, and psychometric properties of PROMs were often not described. Studies reported moderate to good agreement between PROMs and proxROMs. There is less agreement on subjective outcome measures (e.g., depression score) compared to observable items, and proxy bias results in in worse outcomes compared to patient self-reports. Conclusion Current literature, though limited, demonstrates moderate to good agreement between injured patients’ self- and proxy-reports. Future studies should be mindful of current guidelines on proxy reporting when developing their studies and consider including neglected populations such as cognitively impaired patients to improve clinical validity.

Background Proxy responses are very common when surveys are conducted among the elderly or disabled population. Outcomes reported by proxy may be systematically different from those obtained from patients directly. The objective of the study is to examine the presence, direction, and magnitude of possible differences between proxy-reported and patient-reported outcomes in health and functional status measures among Medicare beneficiaries. Methods This study is a pooled cross-sectional study of a nationally representative sample of community-dwelling Medicare beneficiaries from 2006 to 2011. Survey respondents can respond to the Medicare Current Beneficiary Survey either by themselves or via proxies. Health and functional status was assessed across five domains: physical, affective, cognitive, social, and sensory status. Propensity score matching was used to get matched pairs of patient-reports and proxy-reports. Results After applying the propensity score matching, the study identified 7,780 person-years of patient-reports paired with 7,780 person-years of proxy-reports. Except for the sensory limitation, differences between proxy-reported and patient-reported outcomes were present in physical, affective, cognitive, and social limitations. Compared to patient-reports, a question regarding survey respondents’ difficulties in managing money was associated with the largest proxy response bias (relative risk, RR = 3.83). With few exceptions, the presence, direction, and magnitude of differences between proxy-reported and patient-reported outcomes did not vary much in the subgroup analysis. Conclusions When there is a difference between proxy-reported and patient-reported outcomes, proxies tended to report more health and functional limitations among the elderly and disabled population. The extent of proxy response bias depended on the domain being tested and the nature of the question being asked. Researchers should accept proxy reports for sensory status and objective, observable, or easy questions. For physical, affective, cognitive, or social status and private, unobservable, or complex questions, proxy-reported outcomes should be used with caution when patient-reported outcomes are not available.

Background Proxy respondents are frequently used in surveys, including those assessing health-related quality of life (HRQOL). In cancer, most research involving proxies has been undertaken with paired proxy-patient populations, where proxy responses are compared to patient responses for the same individual. In these populations, proxy-patient differences are small and suggest proxy underestimation of patient HRQOL. In practice, however, proxy responses will only be used when patient responses are not available. The difference between proxy and patient reports of patient HRQOL where patients are not able to report for themselves in cancer is not known. The objective of this study was to evaluate the difference between patient and proxy reports of patient HRQOL in a large national cancer survey, and determine if this difference could be mitigated by adjusting for clinical and sociodemographic information about patients. Methods Data were from the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Patients or their proxies were recruited within 3–6 months of diagnosis with lung or colorectal cancer. HRQOL was measured using the SF-12 mental and physical composite scales. Differences of ½ SD (=5 points) were considered clinically significant. The primary independent variable was proxy status. Linear regression models were used to adjust for patient sociodemographic and clinical covariates, including cancer stage, patient age and education, and patient co-morbidities. Results Of 6471 respondents, 1011 (16%) were proxies. Before adjustment, average proxy-reported scores were lower for both physical (−6.7 points, 95% CI -7.4 to −5.9) and mental (−6 points, 95% CI -6.7 to −5.2) health. Proxy-reported scores remained lower after adjustment (physical: −5.8 points, −6.6 to −5; mental: −5.8 points, −6.6 to 5). Proxy-patient score differences remained clinically and statistically significant, even after adjustment for sociodemographic and clinical variables. Conclusions Proxy-reported outcome scores for both physical and mental health were clinically and significantly lower than patient-reported scores for these outcomes. The size of the proxy-patient score differences was not affected by the health domain, and adjustment for sociodemographic and clinical variables had minimal impact.

Aims Many large-scale population-based surveys, research studies, and clinical care allow for inclusion of proxy reporting as a strategy to collect outcomes when patients are unavailable or unable to provide reliable self-report. Prior work identified an absence of methodological guidelines regarding proxy reporting in adult populations, including who can serve as a proxy, and considerations for data collection, analysis, and reporting. The primary objective of this work by the ISOQOL Proxy Task Force was to review documents and clinical outcome assessment measures with respect to proxy reporting and to develop, through consensus, considerations for proxy reporting. Methods We assembled an international group with clinically relevant and/or methodological expertise on proxy use in adult populations. We conducted a targeted review of documentation based on regulatory, non-regulatory, professional society, and individual measure sources. Using a standardized collection form, proxy-related information was extracted from each source including definitions of a proxy, characteristics of a proxy, domains addressable or addressed by a proxy, and observer-reporting. Results The definition of proxy was inconsistent across 39 sources, except regulatory documents which defined a proxy as a person other than the patient who reports on an outcome as if she/he were the patient. While proxy report was discouraged in regulatory documentation, it was acknowledged there were instances where self-report was impossible. Many documentation sources indicated proxies would be well-justified in certain contexts, but did not indicate who could act as a proxy, when proxies could be used, what domains of patient health they could report on, or how data should be reported. Observer-reported outcomes were typically defined as those based on observed behaviors, however there was not a consistent differentiation between proxy and observer reporting. Based on information extracted from these resources, we developed a checklist of considerations when including proxy-reported measures or using proxies in study design, data collection, analysis, interpretation and reporting of proxy reported data. Conclusion Our targeted review highlights a lack of clarity in capturing, interpreting and reporting data from proxies in adult populations. We provide a checklist of considerations to assist researchers and clinicians with including proxies in research studies and clinical care. Lastly, our review identified areas where further guidance and future research are necessary.

Aims A proxy is someone other than a patient who reports a patient’s outcomes as if they are the patient. Due to known discordance with patient reports, proxies are often not recommended in clinical trials; however, proxies may be needed in certain research contexts. We aimed to identify and describe trials registered on the Australian New Zealand Clinical Trials Registry (ANZCTR) with proxy-reported endpoints. Methods ANZCTR was systematically searched from inception (2005) to 31 March 2017 for trials with proxy-reported endpoints. Primary and secondary endpoints for each trial retrieved by the search were individually coded (proxy-reported: yes/no), and trials with confirmed proxy-reported endpoints were included in the analysis. Results Of 13,666 registered trials, 469 (3.4%) included a proxy-reported endpoint (867 individual proxy-reported endpoints in total: 62% family member proxy, 22% health professional). Proxy endpoint inclusion did not significantly increase over time ( r  = 0.18, p  = 0.59). Mental health (11.5%), stroke (10.3%) and neurological (8.3%) trials had the highest proportion of trials using proxies. Of the 469 trials, 123 (26.2%) studies involved paediatric patients. Discussion Proxy-reported endpoints are included in a small but notable number of studies, which may indicate other types of outcomes are used for patients unable to self-report, or that these patients are under-researched.

Measuring patients satisfaction is an important part of continuous quality improvement in health care. In intensive care, family satisfaction is often used as a proxy for patient experience. At present, no suitable instrument to measure this has been fully validated in Sweden. The purpose of this study was to develop and validate a questionnaire intended to evaluate families’ satisfaction of quality of care in Swedish intensive care units. Based on literature and the modification of pertinent items in two existing North American questionnaires, a Swedish questionnaire was developed. Content validity was assessed by experts, and the cognitive method Think Aloud was used with twelve family members of intensive care patients in two different intensive care units. Data was analysed using qualitative content analysis. Seven items in the questionnaire were identified as problematic, causing eight problems concerning questioning of content and 23 concerning misunderstanding. Six of these items were changed in order to be understood the way they were intended, and one item was removed. A family satisfaction questionnaire applicable in Swedish intensive care units has been developed and validated for respondents’ understanding of the questions being asked. However, further psychometric testing should be performed when more data are available.

Short stature may be associated with impairments in health-related quality of life (HRQoL). This study compared the HRQoL of children adolescents diagnosed with short stature to population norms and examined the effects of height deviation and treatment status on HRQoL. Method: We cross-sectionally assessed 110 children adolescents aged 8-18, with current short stature (height deviation ≤-2 standard-deviation (SD)) or normal height achieved since diagnosis, and 98 parents, using the generic KIDSCREEN and the chronic-generic DISABKIDS instruments. Results: Generic HRQoL of patients was similar to population norms. Patients with achieved normal height reported better chronic-generic HRQoL when untreated, while patients with current short stature reported better HRQoL upon receiving treatment. Parents reported better HRQoL for treated patients, especially for girls. Conclusion: Although their HRQoL is not significantly compromised, patients diagnosed with short stature may profit from growth-hormone treatment. Specific instruments are needed to adequately assess the effectiveness of treatment.

Introduction: The prevalence rates of obesity have increased in recent decades; despite leveling off in recent German studies among children and adolescents, obesity rates remain high. Psychosocial factors have an adverse impact on the maintenance of obesity. Hence, this study examined the mediating effects of mental health problems on the relation between the body mass index standard deviation score (BMI-SDS) and global health-related quality of life (HRQoL) among adolescent inpatients with obesity while controlling for gender and age-group. Methods: Three simple mediation analyses with gender and age-group as covariates were conducted for n = 313 adolescents with obesity (n female = 193, 61.7%) aged 12–17 (M = 14.19, SD = 1.52; BMI-SDS: M = 2.67, SD = 0.52). The adolescents were asked to report their global HRQoL at admission, and their parents estimated the children’s mental health problems at home prior to inpatient rehabilitation. Results: Emotional, peer-related, and conduct problems mediated the unfavorable effects of BMI-SDS on global HRQoL, showing high, moderate, and small effect sizes, respectively (completely standardized indirect effect of emotional problems: β = −0.09, SE = 0.03, 95% B-CI = −0.15 to −0.04; conduct problems: β = −0.03, SE = 0.02, 95% B-CI = −0.06 to −0.01; peer-related problems: β = −0.10, SE = 0.03, 95% B-CI = −0.16 to −0.05). Conclusion: Mental health problems may be one salient pathway through which BMI-SDS impairs global HRQoL among adolescents with obesity. Hence, inpatient rehabilitation programs for adolescents with obesity should increase their focus more on the development of psychosocial skills. Thus, the promotion of emotion regulation and social-emotional competencies is suggested.