Patients’ perspective on supposedly patient-relevant process and outcome parameters: a cross-sectional survey within the ‘PRO patients study’

Background To be able to make informed choices based on their individual preferences, patients need to be adequately informed about treatment options and their potential outcomes. This implies that studies measure the effects of care based on parameters that are relevant to patients. In a previous scoping review, we found a wide variety of supposedly patient-relevant parameters that equally addressed processes and outcomes of care. We were unable to identify a consistent understanding of patient relevance and therefore aimed to develop an empirically based concept including a generic set of patient-relevant parameters. As a first step we evaluated the process and outcome parameters identified in the scoping review from the patients’ perspective. Methods We conducted a cross-sectional survey among German general practice patients. Ten research practices of Witten/Herdecke University supported the study. During a two-week period in the fall of 2020, patients willing to participate self-administered a short questionnaire. It evaluated the relevance of the 32 parameters identified in the scoping review on a 5-point Likert scale and offered a free-text field for additional parameters. These free-text answers were inductively categorized by two researchers. Quantitative data were analyzed using descriptive statistics. Bivariate analyses were performed to determine whether there are any correlations between rating a parameter as highly relevant and patients’ characteristics. Results Data from 299 patients were eligible for analysis. All outcomes except ‘sexuality’ and ‘frequency of healthcare service utilization’ were rated important. ‘Confidence in therapy’ was rated most important, followed by ‘prevention of comorbidity’ and ‘mobility’. Relevance ratings of five parameters were associated with patients’ age and gender, but not with their chronic status. The free-text analysis revealed 15 additional parameters, 12 of which addressed processes of care, i.e., ‘enough time in physician consultation’. Conclusion Patients attach great value to parameters addressing processes of care. It appears as though the way in which patients experience the care process is not less relevant than what comes of it. Relevance ratings were not associated with chronic status, but few parameters were gender- and age-related. Trial registration Core Outcome Measures in Effectiveness Trials Initiative, registration number: 1685.

Relationship between housing insecurity, diabetes processes of care, and self-care behaviors

Background The aim of this analysis was to examine the influence of housing insecurity on diabetes processes of care and self-care behaviors and determine if that relationship varied by employment status or race/ethnicity. Methods Using nationally representative data from the Behavioral Risk Factor Surveillance System (2014-2015), 16,091 individuals were analyzed for the cross-sectional study. Housing insecurity was defined as how often respondents reported being worried or stressed about having enough money to pay rent/mortgage. Following unadjusted logistic models testing interactions between housing insecurity and either employment or race/ethnicity on diabetes processes of care and self-care behaviors, stratified models were adjusted for demographics, socioeconomic status, health insurance status, and comorbidity count. Results 38.1% of adults with diabetes reported housing insecurity. Those reporting housing insecurity who were employed were less likely to have a physicians visit (0.58, 95%CI 0.37,0.92), A1c check (0.45, 95%CI 0.26,0.78), and eye exam (0.61, 95%CI 0.44,0.83), while unemployed individuals were less likely to have a flu vaccine (0.84, 95%CI 0.70,0.99). Housing insecure White adults were less likely to receive an eye exam (0.67, 95%CI 0.54,0.83), flu vaccine (0.84, 95%CI 0.71,0.99) or engage in physical activity (0.82, 95%CI 0.69,0.96), while housing insecure Non-Hispanic Black adults were less likely to have a physicians visit (0.56, 95%CI 0.32,0.99). Conclusions Housing insecurity had an influence on diabetes processes of care and self-care behaviors, and this relationship varied by employment status and race/ethnicity. Diabetes interventions should incorporate discussion surrounding housing insecurity and consider differences in the impact by demographic factors on diabetes care.

Future Eldercare Planning Among Chinese Aging Families in Hong Kong

Increasing attention has been paid to the potential role of care planning in buffering future eldercare challenges. However, little is known about the characteristics of care planning among Chinese ageing families. It is also of interest to reflect how recent events such as COVID-19 pandemic may affect their views of the future care planning. From a family systems perspective, this study explored the extent, processes, and contents of intergenerational care planning of Chinese ageing families in Hong Kong. Dyadic interviews were conducted with 60 adult child-older parent pairs, and individual interviews were conducted with another 33 adult children. Intergenerational discrepancies in extent and processes of care planning, intergenerational congruence of care expectations and struggles, facilitating role of family capital and hindering role of cultural capital in care planning were primary themes. Although both generations demonstrated strong awareness of future eldercare needs, they were found engaged in different levels and processes of care planning. Adult children’s level of engagement in planning activities may influence parents’ extent and contents of care planning. Intergenerational transmission of eldercare values contributed to intergenerational congruence of care expectations but also led to similar struggles and ambivalent attitudes toward future care. Moreover, family capital was found to facilitate family care planning while Chinese cultural values that emphasize family care may hinder both generations’ efforts in care planning. The findings will deepen our understanding on characteristics of intergenerational care planning in Asian Chinese communities and inform services to improve adult children and ageing parents’ preparation for future eldercare.

Time and Technology: The Temporalities of Care

By focusing the temporalities of care, the chapter analyzes a special relation between time and technology that underlies the making and persisting of media and infrastructures. I propose to differentiate between four types of care practices with corresponding different temporal patterns that are highly relevant for the functioning of technological systems in the past and present. First, the retrospective response to unforeseen interruptions (repair); second, the prospective routine procedure to prevent all forms of disorder (maintenance); third, a neglect of care that leads to devaluating infrastructure (abandonment) as well as—fourth—forms of revaluation in changing contexts (repurposing). Taking the new Berlin airport BER as an example, it will be shown that infrastructures exhibit different layers of temporality formed by these cyclic and repetitive processes of care and their transforming effects. Thus, even the performance of the most “hardwired,” late modern technology systems is crisscrossed by temporal regimes that stem from older, non-modern temporalities of care.