scholarly journals Documenting Routinely What Matters to People: Standardized Headings for Health Records of Patients with Chronic Health Conditions

2018 ◽  
Vol 09 (02) ◽  
pp. 348-365 ◽  
Author(s):  
Birgit Prodinger ◽  
Paul Rastall ◽  
Dipak Kalra ◽  
Darren Wooldridge ◽  
Iain Carpenter

Objective Specifying the content in electronic health records (EHRs) through standardized headings based on international reference classifications will facilitate their semantic interoperability. The objective of this study was to specify potential chapter headings for EHRs aligned with the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF) based on the perspectives of people living with chronic health conditions, carers, and professionals. Methods A multistage process was established including (1) a patient workshop, (2) an online survey of both patients and carers, and (3) an online consultation with patient and professional bodies. The ICF served as a starting point. Based on the first stage, a first draft of the headings was developed and further refined based on the feedback at each stage. We examined in a fourth step whether items from existing assessment tools support the operationalization of the identified headings. Therefore, we used the WHO Disability Assessment Schedule 2.0 (WHODAS2.0), a patient-reported instrument, and interRAI, a clinician-administered instrument. Results The first workshop was attended by eight people, the survey was completed by 250 persons, and the online consultation received detailed feedback by 18 professional bodies. This study resulted in 16 potential chapter headings for EHRs which capture aspects related to the body, such as emotions, motivation, sleep, and memory or thoughts, to being involved in social life, such as mobility, social activities, and finances, as well as to the care process, such as understanding of health issues and treatment or care priorities and goals. When using the WHODAS2.0 and interRAI together, they capture all except one of the proposed headings. Conclusion The identified headings provide a high level structure for the standardized recording, use, and sharing of information. Once implemented, these headings have the potential to facilitate the delivery of personalized care planning for patients with long-term health problems.

2020 ◽  
Vol 25 (3) ◽  
pp. 594-603
Author(s):  
Halina Flannery ◽  
Jenna Jacob

There is a growing drive to develop and implement patient-reported outcome measures within paediatric health services, particularly for young people living with chronic health conditions; however, there is little consensus on how best to do this in meaningful ways within psychological services working alongside medical teams. This reflective commentary considers some of the challenges of collecting psychological outcome measures in paediatric services and considers alternative approaches to making outcome measurement meaningful. All measures have their limitations; however, they become meaningless if they are not used in meaningful and considered ways with young people. Client-defined outcome measurement, such as goal-based outcome measures, alongside other types of measurement, can capture outcomes of meaning to young people living with chronic health conditions, and can enable them to feed into a shared decision-making process.


2020 ◽  
Vol 3 (2) ◽  
pp. 1-14
Author(s):  
Ray Marks

Background The coronavirus Covid-19 strain that emerged in December 2019, continues to produce a widespread and seemingly intractable negative impact on health and longevity in all parts of the world, especially, among older adults, and those with chronic health conditions. Aim The first aim of this review article was to examine, summarize, synthesize, and report on the research base concerning the possible use of vitamin-D supplementation for reducing both Covid-19 risk and severity, especially among older adults at high risk for Covid-19 infections. A second was to provide directives for researchers or professionals who work or are likely to work in this realm in the future. Methods All English language relevant publications detailing the possible efficacy of vitamin D as an intervention strategy for minimizing Covid-19 infection risk published in 2020 were systematically sought. Key words used were: Vitamin D, Covid-19, and Coronavirus. Databases used were PubMed, Scopus, and Web of Science. All relevant articles were carefully examined and those meeting the review criteria were carefully read, and described in narrative form. Results Collectively, these data reveal vitamin D is a powerful steroid like compound that is required by the body to help many life affirming physiological functions, including immune processes, but its deficiency may seriously impact the health status and well being of the older adult and others. Since vitamin D is not manufactured by the body directly, ensuring those who are deficient in vitamin D may prove a helpful overall preventive measure as well as a helpful treatment measure among older adults at high risk for severe Covid-19 disease outcomes. Conclusions Older individuals with chronic health conditions, as well as healthy older adults at risk for vitamin D deficiency are likely to benefit physically as well as mentally, from efforts to foster adequate vitamin D levels. Geriatric clinicians can expect this form of intervention to reduce infection severity in the presence of Covid-19 infection, regardless of health status, and subject to careful study, researchers can make a highly notable impact in this regard.


2021 ◽  
pp. JARC-D-20-00010
Author(s):  
Xiangli Chen ◽  
Kanako Iwanaga ◽  
Jia-Rung Wu ◽  
Beatrice Lee ◽  
Fong Chan ◽  
...  

Chronic health conditions and disabilities interfere with major life activities, and these interferences are the result of complex interactions between health condition factors, psychological factors, personal factors, and socioenvironmental factors. The World Health Organization (WHO) International Classification of Functioning, Disability, and Health (ICF) framework is a biopsychosocial model that conceptualizes the experience of disability with attention to these interactions. The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) is an assessment tool developed to measure self-reported activity limitations and restrictions to participation experienced by individuals with disabilities independent of his or her medical diagnosis. In order to allow practitioners to effectively use this tool with individuals with various chronic illnesses and disabilities, the current study aimed to evaluate the measurement structure and psychometric properties of the WHODAS 2.0. A total of 945 adults with disabilities participated in the current study. Results support two-factor structure of this measurement tool with adequate reliability and construct validity. The WHODAS 2.0 is a valid, useful tool for rehabilitation counseling professionals to more effectively support adults with chronic health conditions and disabilities in achieving their psychosocial and employment success.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S841-S841
Author(s):  
Janis Sayer ◽  
Jennifer L Smith ◽  
Cate O’Brien ◽  
Joseph G Bihary ◽  
Dugan O’Connor ◽  
...  

Abstract An overwhelming three-quarters of persons age 65 and over have multiple chronic health conditions (Gerteis et al., 2014). With a growing population of older adults, understanding the factors that predict health and reduce the risk of chronic disease is critical. Recent evidence finds that a high sense of purpose- “the belief that one’s life is purposeful and meaningful” (Ryff & Keyes, 1995, p. 720)- is associated with positive health outcomes among older adults. This study investigated the association between purpose and number of chronic conditions among older adults, and whether the relationship depended on age. The study included 6148 older adults (mean age=83.8) who participated in a larger study on wellness. Participants completed a survey that included a measure of sense of purpose and questions about chronic health conditions. Data were analyzed controlling for demographics, optimism, pessimism, social contact, BMI, physical activity, and smoking. Lower levels of purpose were significantly associated with higher numbers of chronic conditions. There was a significant interaction between purpose and age, such that relatively younger older adults with high levels of purpose had fewer chronic conditions. There was no relationship between purpose and number of chronic conditions for the oldest adult participants. The results add new findings to the body of research that demonstrates that sense of purpose is associated with chronic disease. As sense of purpose is modifiable, interventions that increase purpose among older adults, with an emphasis on the youngest-old, should be developed and implemented.


2021 ◽  
pp. 002076402199117
Author(s):  
James R Muruthi ◽  
Sarah G Spafford ◽  
Maggie L Osa ◽  
Alicia DeLouize ◽  
Paul Kowal ◽  
...  

Background: Although approximately 79% of the world’s suicides occur in low- and middle-income countries (LMICs), the limited research in these regions has primarily focused on the rates of suicide attempts (SA) and ideation among men and younger members of the population. Aim: This study investigated the associations between bodily pain, functional limitation, chronic health conditions, and suicidal ideation among older Ghanaian women with a positive screen for depression. Methods: Data was obtained from the World Health Organization’s Study on global AGEing and adult health (SAGE) Ghana Wave 1, a nationally representative sample. Based on the interpersonal theory of suicide, we used logistic regression analysis to investigate the associations between the variables. Results: Functional limitation, bodily pain, hopelessness, and hypertension were significantly associated with a higher risk of suicidal ideation after accounting for sociodemographic and other confounding factors. Conclusions: Early interventions designed to decrease hopelessness, hypertension, and functional limitations may lead to reduced suicide ideation among older Ghanaian women who screen positive for depression.


Author(s):  
Alison Keogh ◽  
Rob Argent ◽  
Amy Anderson ◽  
Brian Caulfield ◽  
William Johnston

Abstract Background The World Health Organisation’s global strategy for digital health emphasises the importance of patient involvement. Understanding the usability and acceptability of wearable devices is a core component of this. However, usability assessments to date have focused predominantly on healthy adults. There is a need to understand the patient perspective of wearable devices in participants with chronic health conditions. Methods A systematic review was conducted to identify any study design that included a usability assessment of wearable devices to measure mobility, through gait and physical activity, within five cohorts with chronic conditions (Parkinson’s disease [PD], multiple sclerosis [MS], congestive heart failure, [CHF], chronic obstructive pulmonary disorder [COPD], and proximal femoral fracture [PFF]). Results Thirty-seven studies were identified. Substantial heterogeneity in the quality of reporting, the methods used to assess usability, the devices used, and the aims of the studies precluded any meaningful comparisons. Questionnaires were used in the majority of studies (70.3%; n = 26) with a reliance on intervention specific measures (n = 16; 61.5%). For those who used interviews (n = 17; 45.9%), no topic guides were provided, while methods of analysis were not reported in over a third of studies (n = 6; 35.3%). Conclusion Usability of wearable devices is a poorly measured and reported variable in chronic health conditions. Although the heterogeneity in how these devices are implemented implies acceptance, the patient voice should not be assumed. In the absence of being able to make specific usability conclusions, the results of this review instead recommends that future research needs to: (1) Conduct usability assessments as standard, irrespective of the cohort under investigation or the type of study undertaken. (2) Adhere to basic reporting standards (e.g. COREQ) including the basic details of the study. Full copies of any questionnaires and interview guides should be supplied through supplemental files. (3) Utilise mixed methods research to gather a more comprehensive understanding of usability than either qualitative or quantitative research alone will provide. (4) Use previously validated questionnaires alongside any intervention specific measures.


Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 393-393
Author(s):  
Joseph Pidala ◽  
Brenda Kurland ◽  
Shawn Chai ◽  
Navneet S. Majhail ◽  
Daniel J. Weisdorf ◽  
...  

Abstract Abstract 393 Chronic graft-versus-host disease (cGVHD) can negatively impact quality of life (QOL) following allogeneic hematopoietic cell transplantation (HCT). Whether the new NIH cGVHD global severity grading correlates with patient reported QOL is not known. In a prospectively assembled multi-center observational cohort study of adult HCT recipients with cGVHD, we examined the relationship between cGVHD severity according to NIH criteria and patient-reported QOL. Major objectives of this analysis were: (1) Describe the relationship between cGVHD severity and patient reported QOL; (2) compare QOL in HCT recipients with cGVHD to US population normative data; (3) compare QOL in HCT recipients with cGVHD to patients with other chronic health conditions; and (4) investigate the ability of SF-36 and FACT-BMT QOL instruments to discriminate cGVHD severity. This analysis included 298 patients with cGVHD who were enrolled at a median of 12.3 months from HCT. Overall, 54% patients were diagnosed < 3 months before enrollment. 56% had classic and 44% had overlap cGVHD. Organs most commonly involved included skin (63%), mouth (61%), eye (50%), and liver (50%). 31 (10%) had mild, 175 (59%) had moderate and 92 (31%) had severe cGVHD. Univariable modeling confirmed the relationship between cGVHD severity and QOL outcomes (SF-36 and FACT-BMT composite scores and subscales). Among other considered disease-, transplantation-, and socio-demographic variables, only age was significantly correlated with QOL (physical functioning and the physical component score (PCS) of the SF-36 instrument). Multivariable linear regression analysis adjusting for age at enrollment showed QOL measures, especially involving physical functioning, to differ according to cGVHD severity. For example, controlling for age, the average physical component score (PCS) of the SF-36 was 5.6 points higher for mild cGVHD compared to severe cGVHD (p < 0.01) and 3.2 points higher for moderate cGVHD compared to severe cGVHD (p = 0.02). In comparison to age- and gender-matched US population normative data for SF-36, mean scores for cGVHD cohort members were significantly lower for physical functioning, role-physical, bodily pain, general health, vitality, social functioning, and PCS. There were no significant differences observed in the domains of role-emotional, mental health, or MCS. We also compared the mean SF-36 scores (PCS and MCS) of cGVHD patients with those reported for other chronic health conditions: Patients with moderate and severe cGVHD had PCS scores comparable to scores reported for systemic sclerosis, systemic lupus erythematosis, and multiple sclerosis, and greater impairment compared to common conditions such as diabetes, hypertension, and chronic lung disease (see figure). MCS scores of those with severe cGVHD rivaled MCS scores reported with clinical depression, while mild and moderate cGVHD MCS scores were comparable to that of the general population. Discriminative accuracy of the QOL instruments (SF-36 and FACT-BMT) was assessed utilizing an extension of the concordance index to an ordinal gold standard (cGVHD severity). The concordance index was modest (∼0.60) for all QOL scales examined, with no significant differences between the QOL instruments' discriminative ability. We conclude that, while physical components of self-reported quality of life are lower on average for patients with more severe cGVHD, the extent of impairment and symptom burden represented by cGVHD severity are not solely captured by differences in quality of life. Future analyses will evaluate sensitivity to change and may help identify the better instrument to use in this population. In summary, NIH consensus criteria global cGVHD severity is independently associated with patient reported QOL, with worsening QOL for increasing severity of cGVHD. Patients with moderate to severe cGVHD have poor QOL, comparable to patients with other with immune mediated disorders, and much worse than general population norms. We hypothesize that better prevention and control of cGVHD has the potential to not only decrease morbidity and mortality but also to significantly improve QOL. Figure: Comparison of SF-36 PCS and MCS mean scores (with 95% confidence interval) from chronic GVHD cohort members according to NIH severity and chronic health conditions Figure:. Comparison of SF-36 PCS and MCS mean scores (with 95% confidence interval) from chronic GVHD cohort members according to NIH severity and chronic health conditions Disclosures: No relevant conflicts of interest to declare.


Sign in / Sign up

Export Citation Format

Share Document