The PaArticular Scales – A new outcome measure to quantify the impact of joint contractures on activities and participation in individuals in geriatric care: Development and Rasch analysis

BackgroundJoint contractures are frequent conditions in individuals in geriatric care settings and are associated with activity limitations and participation restrictions. As such, relevant intervention programs should address these aspects, and the effectiveness of such programs should be determined by assessing improvement in activities and participation. However, no patient-centred and psychometrically sound outcome measures for this purpose are available so far.ObjectivesThe objectives of this study were to develop and to validate a new outcome measure, the PaArticular Scales, to quantify activities and participation in older individuals with joint contractures. Specific aims were (A) to operationalize the content of an International Classification of Functioning, Disability and Health-based standard set towards meaningful questions and to combine them to a questionnaire and (B) to assess the psychometric properties of the developed questionnaire, in detail to evaluate test–retest reliability, objectivity, internal consistency reliability and criterion validity.DesignOperationalization was reached by an expert consensus conference and a subsequent expert Delphi survey. Psychometric properties were assessed in a cross-sectional study.SettingsNursing homes, geriatric rehabilitation facilities.Participants23 experts (nurses, physicians, physical and occupational therapists) participated in the consensus conference and the Delphi survey. A total of 191 individuals with joint contractures (as confirmed by physician, nurse or physical therapist) between 65 and 102 years, living in nursing homes or as patients in geriatric rehabilitation were enrolled in the cross-sectional study.MethodsRasch Partial Credit Modelling.ResultsThe consensus conference and Delphi survey resulted in a questionnaire with 86 items of the International Classification of Functioning, Disability and Health. Test–retest-reliability among those was acceptable (Cohen's weighted kappa: 0.779). The Rasch analysis revealed two independent interval-scaled scales with 24 items for the Activities scale and 11 items for the Participation scale with high internal consistency reliability. Cronbach's alpha was 0.96 for the Activities scale and 0.92 for the Participation scale. Criterion validity was −0.40 and −0.30 for the Activities scale and for the Participation scale, respectively.ConclusionsThe PaArticular Scales, a new patient-centred and psychometric sound outcome measures to comprehensively assess the impact of joint contractures in geriatric care, are available now. These developed scales will serve as primary outcomes in a scheduled evaluation of a complex intervention to improve participation and quality of life in nursing home residents with joint contractures.     

Personas in online health communities

Many researchers and practitioners use online health communities (OHCs) to influence health behavior and provide patients with social support. One of the biggest challenges in this approach, however, is the rate of attrition. OHCs face similar problems as other social media platforms where user migration happens unless tailored content and appropriate socialization is supported. To provide tailored support for each OHC user, we developed personas in OHCs illustrating users’ needs and requirements in OHC use. To develop OHC personas, we first interviewed 16 OHC users and administrators to qualitatively understand varying user needs in OHC. Based on their responses, we developed an online survey to systematically investigate OHC personas. We received 184 survey responses from OHC users, which informed their values and their OHC use patterns. We performed open coding analysis with the interview data and cluster analysis with the survey data and consolidated the analyses of the two datasets. Four personas emerged—Caretakers, Opportunists, Scientists, and Adventurers. The results inform users’ interaction behavior and attitude patterns with OHCs. We discuss implications for how these personas inform OHCs in delivering personalized informational and emotional support.     

2015—2019年江西省缺血性脑卒中患者特征及住院费用分析

目的 了解江西省2015—2019年缺血性脑卒中住院患者特征及住院费用情况，为缺血性脑卒中防控提供数据支持。方法 收集来自江西省卫生健康委员会DRGs管理系统中2015—2019年全省228家医院（69家三级综合医院，159家二级综合医院），总计381 416例出院主诊断疾病编码为I63（采用国际疾病分类第十版ICD - 10）的缺血性脑卒中患者住院信息。对住院患者特征及费用进行描述性分析。结果 2015—2019年江西省缺血性脑卒中患者,男性占比大于女性，近5年住院率由119.09/10万升高至206.61/10万。缺血性脑卒中患者最常见的共病及并发症为高血压、糖尿病、动脉粥样硬化。缺血性脑卒中次均住院费用为7 067.2(6 846.1)元，5年间，次均住院费用由7 384.0（7 353.6）元降低至6 816.9（6 769.1）元，差异具有统计学意义（H = 12.155，P＜0.002），总费用中药费占比最高，但未见明显变化趋势（H = 7.425，P = 0.063）。结论 2015—2019年江西省缺血性脑卒中住院患者住院率增长较快，高血压、糖尿病、动脉粥样硬化为3个最常见的共病,次均住院费用呈下降趋势，但住院费用负担仍较重。     

Longitudinal person-centered measurement: A psychometric evaluation of the Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ)

ObjectiveThe Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ) was previously developed in Swedish to assess patients’ knowledge seeking and sense making capabilities. Aiming to measure preparedness at different phases during the pre-surgery and recovery period, the objectives were to (a) evaluate psychometric properties of the longitudinal PCSQ, (b) establish measurement invariance over time, and (c) describe change in preparedness.MethodsElective colorectal cancer surgery patients completed a questionnaire at five time points from pre-surgery until 6 months post-surgery (n = 250). The longitudinal PCSQ consists of 23 items measuring four domains: Searching for and making use of information, Understanding and involvement in care, Making sense of recovery, Support and access to care. Psychometric analyses, including confirmatory factor analysis, were applied to evaluate internal consistency reliability and ascertain invariance over time of the measurement structure and parameters.ResultsThe psychometric analyses revealed good fit of the measurement models, high internal consistency reliability (≥.94), and support for configural, metric and scalar measurement invariance of the four PCSQ domains. Patients reported lower levels of preparedness after surgery than pre-surgery.ConclusionThe adapted version of the PCSQ can be used for longitudinal analyses.Practice implicationsThe measurement of preparedness is important for evaluating person-centred outcomes before and during recovery from colorectal cancer surgery.     

Participation of patients and family members in healthcare services at the service and national levels: A lesson learned in Dublin,Ireland

ObjectiveIdentify the current amount and intensity of patient and family participation at the patient, service and national levels from a diabetes and a psychiatric service perspective. Establish the current level of support for greater participation and related characteristics.MethodResearcher-administered questionnaires were conducted with 738 patients and family members in an outpatient type 2 diabetes service and an outpatient psychiatric service, both in Dublin, Ireland.ResultsPatient and family participation at the service and national levels are restricted to the provision of information. Typically no involvement in discussions or the decision -making process is reported. The majority of participants favour greater patient participation at the service level (537/669; 80.3%) and the national level (561/651; 86.2%). Greater support for patient and family member participation is significantly associated with participant’s age, service satisfaction and level of education.ConclusionPatient and family participation is greatest at the patient level. The majority of patients and family members support greater participation at the service and national levels.Practice implicationsThe best way to implement participation needs to be identified. There needs to be a greater focus on participation at the service level. The role of family members also needs to be investigated further.     

Retroperitoneal Fibrosis Secondary to Different Etiologies (Hemilaminectomy and Hypothyroidism): Reports of Two Cases

Retroperitoneal fibrosis (RF) is a clinical entity characterized by the progressive proliferation of connective tissue that rarely forms a mass involving the periaortic area of the abdomen, which may be idiopathic as well as a result of an inflammatory process after aneurysmal dilatation of the aorta. This fibrotic tissue may cover both aorta and iliac arteries, reach the retroperitoneum and surrounding ureters, and cause serious obstructions and renal insufficiency in three-quarters of patients. Most of the patients are known to have atherosclerosis and local inflammation against the antigens of the plaques. A systemic autoimmune disease presenting with retroperitoneal fibrosis seems to be pronounced more frequently nowadays because of the elevated acute-phase reactant levels, positive autoantibodies, and concurrent autoimmune diseases affecting other organs in majority of the diagnosed patients. Ultrasonography, computed tomography, magnetic resonance imaging, positron emission tomography, and retroperitoneal biopsy are useful in diagnosing and assessing the full extent of the disease. Surgical interventions such as ureterolysis and aneurysm repair are frequently performed, but medical therapy including steroids and immunosuppressants is often needed because of the inflammatory and chronic-relapsing nature of the disease.

In this paper, we described two cases diagnosed with RF secondary to hemilaminectomy and hypothyroidism, and we summarized the literature related to RF.     

Patient involvement and language barriers: Problems of agreement or understanding?

ObjectiveThis study aims to explicate efforts for realizing patient-centeredness (PCC) and involvement (SDM) in a difficult decision-making situation. It investigates what communicative strategies a physician used and the immediate, observable consequences for patient participation.MethodsFrom a corpus of videotaped hospital encounters, one case in which the physician and patient used Norwegian as lingua franca was selected for analysis using conversation analysis (CA). Secondary data were measures of PCC and SDM.ResultsThough the physician did extensive interactional work to secure the patient’s understanding and acceptance of a treatment recommendation, his persistent attempts did not succeed in generating the patient’s participation. In ratings of PCC and SDM, this case scored well above average.ConclusionDespite the fact that this encounter displays some of the ‘best actual practice’ of PCC and SDM within the corpus, our analysis of the interaction shows why the strategies were insufficient in the context of a language barrier and possible disagreement.Practice implicationsWhen facing problems of understanding, agreement and participation in treatment decision-making, relatively good patient centered skills may not suffice. Knowledge about the interactional realization of key activities is needed for developing training targeted at overcoming such challenges.     

Communicating to promote informed decisions in the context of early pregnancy loss

ObjectiveTo evaluate residents’ ability to engage standardized patients in informed decision making during a pregnancy loss scenario.MethodsForty patient encounters between interns and standardized patients were coded to assess informed decision-making practices, exploration of unexpressed concerns, and support provision.ResultsInterns engaged in minimum informed decision making but did not address all of the communicative elements necessary for informed decisions, and most elements were only partially addressed. Patients in this study did not receive information about all management options, their concerns were not addressed, and there was limited support communicated for their decision.ConclusionThis study offers an initial assessment of a communicative approach to evaluate and improve decision making during early pregnancy loss. A comprehensive approach to making informed decisions must include discussion of all management options, exploration of patient preferences and concerns, and support for the patient’s decision.Practice implicationsPhysicians could benefit from communication skills training to communicate more effectively with patients to help them make more informed decisions.