Care partners reading patients’ visit notes via patient portals: Characteristics and perceptions

BackgroundCare partners are key members of patients’ health care teams, yet little is known about their experiences accessing patient information via electronic portals.ObjectiveTo better understand the characteristics and perceptions of care partners who read patients’ electronic visit notes.Patient involvementFocus groups with diverse patients from a community health center provided input into survey development.MethodsWe contacted patient portal users at 3 geographically distinct sites in the US via email in 2017 for an online survey including open ended questions which we qualitatively analyzed.ResultsRespondents chose whether to answer as care partners (N = 874) or patients (N = 28,782). Among care partner respondents, 44% were spouses, 43% children/other family members, and 14% friends/neighbors/other. Both care partners and patients reported that access to electronic notes was very important for promoting positive health behaviors, but care partners’ perceptions of importance were consistently more positive than patients’ perceptions of engagement behaviors. Open-ended comments included positive benefits such as: help with remembering the plan for care, coordinating care with other doctors, decreasing stress of care giving, improving efficiency of visits, and supporting patients from a geographical distance. They also offered suggestions for improving electronic portal and note experience for care partners such as having a separate log on for care partners; having doctors avoid judgmental language in their notes; and the ability to prompt needed medical care for patients.DiscussionCare partners value electronic access to patients’ health information even more than patients. The majority of care partners were family members, whose feedback is important for improving portal design that effectively engages these care team members.Practical valuePatient care in the time of COVID-19 increasingly requires social distancing which may place additional burden on care partners supporting vulnerable patients. Access to patient notes may promote quality of care by keeping care partners informed, and care partner’s input should be used to optimize portal design and electronic access to patient information.     

Will the idiotypic network help to solve natural tolerance?

A recent paper on immunity and tolerance to antigenic determinants on antibody variable-regions (idiotypes) brings back to light the potential of idiotypic interactions among antibodies, B cells and T cells in the regulation of specific immune activities. The functional significance of idiotypic regulation has been established in a variety of systems, both concerning the establishment of 'pre-immune' diversity repertoires as well as the clonal regulation of immune responses to foreign and self-antigens. Also, recently the requirement for 'dominant' regulatory mechanisms in natural tolerance has received increasing support. It might thus be fruitful to evaluate the possibility that an idiotypic network has a fundamental role in the operation of the regulatory T cells that establish and maintain self-tolerance.     

Which questionnaires should we use to evaluate quality of life in patients with chronic graft-vs-host disease?

AimTo investigate the ability of two standard quality of life (QOL) questionnaires – The Short Form (36-item) Health Survey (SF-36) and The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ C30) to evaluate QOL in patients with chronic graft-vs-host disease (cGVHD) graded according to National Institutes of Health (NIH) consensus criteria.MethodsIn this cross-sectional study, QOL was assessed in patients who underwent allogeneic stem cell transplantation (allo-SCT) at the University Hospital Centre Zagreb and were alive and in complete remission for more than one year after allo-SCT.ResultsThe study included 58 patients, 38 patients with cGVHD and 20 controls, patients without cGVHD. Patients with cGVHD scored according to the NIH criteria had significantly lower scores of global health status and lower QOL on all SF-36 subscales and most of QLQ C30 functional subscales (P < 0.050 for all comparisons). Furthermore, patients with active cGVHD had significantly lower QOL scores than patients with inactive cGVHD, and this difference was most evident in physical functioning subscale of SF-36 (P = 0.0007) and social functioning subscale of QLQ C30 (P = 0.009).ConclusioncGVHD scored according to the NIH criteria is correlated with patient-reported QOL, particularly in the physical domains as detected by SF-36. QLQ C30 questionnaire adds more information on social functioning and should be used as a valuable tool in the evaluation of social domains in cGVHD patients.Although it is potentially lifesaving for a variety of hematological malignant and non-malignant disorders, allogeneic stem cell transplantation (allo-SCT) carries a significant risk of acute and late post-transplant complications. Improvements in transplantation techniques and supportive care have resulted in a reduction of early transplant-related mortality (1,2). However, the burden of late complications remains high, and two thirds of long-term allo-SCT survivors experience at least one chronic health condition (3). These complications occur due to treatment exposures before and during allo-SCT, cause substantial mortality, and severely impair patients’ functional status and quality of life (QOL). This is why today the aim of the treatment is not just to cure the primary hematological disease, but to facilitate the recovery of the physical and emotional functioning and improve QOL and social reintegration in family and work environment.Health-related QOL is now considered to be one of the relevant treatment outcomes because it provides a broader understanding of the patient’s status beyond simple disease-free survival. It is a multi-dimensional construct comprised of several related domains including physical, emotional, social, and role functioning, as well as a person''s overall evaluation of his or her well-being and ability to function (4,5). Better understanding of QOL in long-term survivors is necessary to provide adapted pre-transplant counseling and recommendations for post-transplant follow-up.With a cumulative incidence of 40%-70% and significant mortality, chronic GVHD (cGVHD) represents the most important late complication following allo-SCT (6,7). Moreover, it seems that the incidence of cGVHD in the recent years has been increasing, probably due to the fact that much older patients undergo allo-SCT, as well as due to the increased use of peripheral blood stem cell grafts and matched unrelated donors, all known risk factors for cGVHD (8). In a series of publications originating from 2005 National Institutes of Health (NIH) Consensus Conference, investigators proposed means to standardize diagnosis, scoring, histopathology, biomarkers, response assessment, and research in cGVHD (9-14). These criteria were developed to advance clinical trials and consequently improve the management of cGVHD and long-term survivorship after allo-SCT.As one of the important treatment outcomes, QOL is increasingly being subjected to the same degree of rigorous study as other significant allo-SCT outcomes. Most of the studies so far have reported a negative, significant association between cGVHD and QOL after allo-SCT (15-20). However, some of the studies have found no association (21-25), and this relationship still needs to be elucidated. The awareness of the relationship between QOL and cGVHD is necessary to further facilitate the prevention and treatment of cGVHD.The aim of this study was to examine the effect of cGVHD on QOL in our cohort of long-term allo-SCT survivors with the use of two standard QOL questionnaires; The Short Form (36-item) Health Survey (SF-36) and The EORTC Quality of Life Questionnaire (QLQ C30). Furthermore, we assessed QOL according to cGVHD severity and activity defined by the NIH consensus criteria.     

Why diabetes patients are more prone to the development of colon cancer?

Type II diabetes mellitus (T2D) develops as the consequence of relative insulin insufficiency. The onset of T2D is characterized by insulin resistance, and in most cases, with hyperinsulinemia for compensation. Extensive basic and clinical examinations have identified a large profile of T2D susceptibility genes and multiple risk factors, including obesity and sedentary life style, which are shared by colon cancer development. The intestinal endocrine L cells produce an incretin hormone, namely glucagon-like peptide-1 (GLP-1), which stimulates insulin secretion in blood glucose dependent manner, pancreatic beta cell proliferation and neogenesis. It has been shown that in T2D patients, postprandial GLP-1 secretion level is reduced. I hypothesize that during the development of insulin resistance, intestinal endocrine L cells produce more GLP-1 for compensation. This compensatory response involves the activation of Wnt signaling pathway and the cross-talk between Wnt and insulin signaling pathways. A pathological consequence of this compensation will be the stimulated expression of proto-oncogenes, including c-Myc.     

What are effective strategies to communicate cardiovascular risk information to patients? A systematic review

Objective

To compare different interventions used to communicate cardiovascular risk and assess their impact on patient related outcomes.

Methods

A systematic search of six electronic data sources from January 1980 to November 2008. Data was extracted from the included studies and a narrative synthesis of the results was conducted.

Results

Fifteen studies were included. Only four studies assessed individuals’ actual cardiovascular risk; the rest were analogue studies using hypothetical risk profiles. Heterogeneity in study design and outcomes was found. The results from individual studies suggest that presenting patients with their cardiovascular risk in percentages or frequencies, using graphical representation and short timeframes, is best for achieving risk reduction through behaviour change. However, this summary is tentative and needs further exploration.

Conclusion

Better quality trials are needed that compare different risk presentation formats, before conclusions can be drawn as to the most effective ways to communicate cardiovascular risk to patients.

Practice implications

Instead of directing attention to the accuracy of cardiovascular risk prediction, more should be paid to the effective presentation of risk, to help patients reduce risk by lifestyle change or active treatment.     

Does the professional and working context of United Kingdom clinicians predict if they use practices to support patients with long term conditions to self manage?

Introduction

Our study examines how the professional and employment context may influence clinicians’ practice self management support for patients with long term conditions (LTC).

Material and methods

We surveyed clinicians working with patients with depression, chronic obstructive pulmonary disorder (COPD), chronic musculo skeletal pain and diabetes.

Results

Clinicians most frequently endorsed items on a scale concerned with patient centeredness, and less frequently endorsed items concerned with clinical and organizational self management support. The most important factors predicting these latter activities were the intensity of working experience with patients with LTC and attending professional training addressing the principles and practice of self management support. Practicing patient centeredness was endorsed by nearly all respondents, and so was not sensitive to variation on work variables.

Conclusions

The interaction of training and intensity of work with patients with LTC seems to have the most powerful effect on undertaking clinical and organizational self management support practices. To facilitate clinicians’ practice of self management support for patients with LTC it is very important to provide relevant professional training and to build specialized patient care teams with professionals having complimentary skills.     

Exploring the impact of patient views on ‘appropriate’ use of services and help seeking: a mixed method study

Background

There are commonly-held views relating to what constitutes appropriate and inappropriate use of finite NHS resources. However, very little is known about how and why such views have an impact on consultation patterns.

Aim

To quantify the prevalence of opinion on whether people use health services unnecessarily within primary care and accident and emergency (A&E) in order to examine the impact of these views on help-seeking behaviour.

Design of study

A mixed method study utilising cross-sectional questionnaire survey and semi-structured interviews.

Setting

A primary care practice in South West England, UK.

Method

Responders to the questionnaire survey were drawn from a random sample of individuals, stratified by sex, selected from one practice in the UK (n = 911). The qualitative sample (n = 22) were purposefully selected from the same general practice.

Results

The quantitative data suggest that the majority of people believe individuals utilise either GP or A&E services inappropriately (65.6%; 95% confidence interval [CI] = 62.4 to 68.7). However, strong views relating to this inappropriate healthcare use were not associated with reported seeking of immediate care (odds ratio [OR] = 0.98, 95% CI = 0.66 to 1.46 for ‘lump’ vignette). Responders tend to consider other people as time wasters, but not themselves. Individuals'' generally describe clear rationales for help seeking, even for seemingly trivial symptoms and anxiety level was strongly predictive of health-seeking behaviour (OR = 2.88; 95% CI = 1.98 to 4.19 for lump vignette).

Conclusion

Perceptions that individuals'' use health services inappropriately are unlikely to explain differences in help-seeking behaviours. The findings suggest that people do not take the decision to consult health services lightly and rationalise why their behaviour is not time wasting.     

Is it possible to predict the long-term response to venlafaxine with the use of biological markers and psychophysiological methods?

INTRODUCTION: The present study investigated whether it is possible to predict the medium term response to venlafaxine using biological markers and psychophysiological methods. MATERIAL: Fourteen (14) patients aged 21-60 years suffering from Major Depression according to DSM-IV were included in the study. METHODS: The SCAN v 2.0 and the IPDE were used to assist clinical diagnosis. Patients were investigated with electrooculogram (EOG), Pattern-Reversal Visual Evoked Potentials (PR-VEPs), Dexamethasone Suppression Test (DST), D-fenfluramine Challenge Test, and brain Single Photon Emission Tomography (SPECT). Venlafaxine 150-225 mg per os daily was administered. The follow-up period was 2 years. STATISTICAL ANALYSIS: Chi-square test and ANOVA were used for the analysis of data. RESULTS: There was a lower left globus pallidus regional cerebral blood flow in patients with better response. On the contrary, chronic patients were closer to normality. DISCUSSION: The results of the current study provide preliminary evidence concerning our ability to predict response to venlafaxine and to understand its way of action.     

How do patients value and prioritize patient portal functionalities and usage factors? A conjoint analysis study with chronically ill patients

Background

Patient portal use can be a stimulant for patient engagement. Yet, the heterogeneous landscape of tethered patient portals, is a major barrier to further portal development and implementation. A variety in portal access means, functionalities, usability and usefulness exists; without having accurate sight on patient perspectives. We aimed to get insights on possible coherence between patients’ preferred usage factors of portals and patients’ prioritization of functionalities, within the complexity of their disease management across different healthcare organizations.

Methods

A conjoint analysis questionnaire was sent to patient panels of two large patient associations in The Netherlands, centered on heart and vascular diseases and lung diseases.

Results

Of 1294 patient respondents, 81% were 55+ years old and 49% were 65+ years old. Overall respondents significantly prioritized user-friendly access to a portal, via a laptop or desktop. Patients aged <?65 were less negative about using tablets to access a portal compared to the total respondents. Patients had no preference for a digital interoperable export functionality; most respondents preferred to create printable overviews. Built-in publication delay of two weeks for medical information was not preferred. Our results show no significant preference of patients between ‘instant publication’ versus ‘publication after new information has been explained by a healthcare provider’. Overall respondents and experienced portal users had a strong preference to be able to communicate with their provider via a portal and to use a portal providing information from multiple providers. Lung patients preferred information from one provider and did not require the possibility to ask online questions.

Conclusions

Heart and vascular patients as well as lung patients prefer similar technical patient portal aspects, independent of their medical condition. Yet, in current portals consistency on this matter is lacking. It is highly assumable that offering a more consistent user-experience across the variety of patient portals could help increase patient portal acceptance, ultimately helping to stimulate patient engagement via patient portal use. We further affirm the need for customization on medical information publication and sharing information of various providers through patient portals, where information provision can be adapted to preferences of patients related to their medical condition(s).

     

Are patients with dementia treated as well as patients without dementia for hypertension,diabetes, and hyperlipidaemia?

Background

Patients suffering from dementia are at risk of being treated differently by GPs from patients without it. Explanations for this could be stigmatisation, treatment with a palliative approach, and the result of the disease process.

Aim

To ascertain whether patients with dementia are treated differently, the index diseases of hypertension, diabetes, and hyperlipidaemia were used to measure care.

Design of study

Retrospective matched control study.

Setting

German general practice.

Method

Sixteen GP practices recruited all their patients with dementia and at least one of the index diseases. Patients without dementia but only the index diseases were matched for age, sex, index disease, and practice, resulting in 216 pairs of patients with and without dementia. From the files, blood pressure, blood sugar/glycated haemoglobin, cholesterol, the dates of measurement, the number of doctor–patient contacts, and the prescribed medication to treat the three conditions under scrutiny were documented. For analysis, t-tests and χ²-tests were used.

Results

No differences were found in treatment outcomes between the two patients groups, except one significant difference: one of the two documented systolic blood pressure values is lower in the dementia group. Furthermore, patients with dementia more often do not receive any medication or are treated with low-priced medications for hypertension (nearly significant).

Conclusion

GPs do not seem to treat patients with dementia differently. The use of lower-priced antihypertensive medication could be the only indication for some kind of difference in approach.     

How do people with asthma use Internet sites containing patient experiences?

Objective

To understand how people engage with websites containing patient authored accounts of health and illness. To examine how people with asthma navigate their way through this information and make use of the patient experiences they find.

Methods

Twenty-nine patients with diagnoses ranging from mild to severe asthma were shown a range of websites, some containing patient experiences, and selected two sites to explore further. They discussed their choices in a series of focus groups and interviews.

Results

Participants were influenced initially by the design quality of the sites and were subsequently drawn to websites containing patient experiences but only when contributions were from similar people offering ‘relevant stories’. The experiences reminded participants of the serious nature of the disease, provided new insights into the condition and an opportunity to reflect upon the role of the disease in their lives.

Conclusion

For people with asthma websites containing other patients’ personal experiences can serve as a useful information resource, refresh their knowledge and ensure their health behaviours are appropriate and up-to-date.

Practice implications

Health professionals should consider referring asthma patients to appropriate websites whilst being aware that online experiences are most engaging when they resonate with the participants own situation.