Patient empowerment

Abstract – Objectives To examine if exercise referral schemes (ERSs) are associated with meaningful changes in health and well-being in a large cohort of individuals throughout England, Scotland, and Wales from the National Referral Database.

Methods Data were obtained from 23 731 participants from 13 different ERSs lasting 6 weeks to 3 months. Changes from pre- to post-ERS in health and well-being outcomes were examined including body mass index (BMI), blood pressure (systolic (SBP) and diastolic (DBP)), resting heart rate (RHR), short Warwick Edinburgh Mental Wellbeing Scale (SWEMWBS), WHO Well-Being Index (WHO-5), Exercise Related Quality of Life scale (ERQoL), and Exercise Self-Efficacy Scale (ESES). Two-stage individual patient data meta-analysis was used to generate effect estimates.

Results Estimates (95% CIs) revealed statistically significant changes occurred compared with point nulls for BMI (−0.55 kg.m2 (−0.69 to −0.41)), SBP (−2.95 mmHg (−3.97 to −1.92)), SWEMWBS (2.99 pts (1.61 to 4.36)), WHO-5 (8.78 pts (6.84 to 10.63)), ERQoL (15.26 pts (4.71 to 25.82)), and ESES (2.58 pts (1.76 to 3.40)), but not RHR (0.22 f c (−1.57 to 1.12)) or DBP (−0.93 mmHg (−1.51 to −0.35)). However, comparisons of estimates (95% CIs) against null intervals suggested the majority of outcomes may not improve meaningfully.

Conclusions We considered whether meaningful health and well-being changes occur in people who are undergoing ERSs. These results demonstrate that, although many health and well-being outcomes improved, the changes did not achieve meaningful levels. This suggests the need to consider the implementation of ERSs more critically to discern how to maximise their effectiveness.

Effect of exercise referral schemes upon health and well-being: initial observational insights using individual patient data meta-analysis from the National Referral Database, J Epidemiol Community Health 2019.11.18

“The delivery of goal-concordant care has been identified as a key priority by the National Academy of Medicine, proposed as a quality measure, and rated by an expert panel as the most important outcome measure for studies of advance care planning interventions. Yet there are no methods that can reliably and accurately be used to measure whether care that was provided to patients was concordant with their goals.

[..] at least three challenges associated with measuring goal concordance must be overcome. First, establishing a baseline measure of patients’ goals against which to assess the concordance of future care is difficult. [..] Second, patients’ goals may change between the time their goals are ascertained and the time care is evaluated. [..] Third, determining whether patients’ experiences of the care they receive align with their original goals is challenging.

[..] I believe that it is therefore time to explore a method that would include objective assessments of baseline preferences and subsequent care in which the evaluators of care are unaware of the evaluations of baseline preferences. Rather than soliciting patients’ or caregivers’ views of goal concordance, this method would involve having evaluators characterize the nature of the care received, such as whether it focused primarily on life extension or comfort, and comparing their assessments to goals that were ascertained in the recent past. [..] Uncertainty may also arise when available documents don’t address which of several goals — such as living as long as possible and avoiding burdensome treatments or days spent in the hospital — a patient would prioritize if they were to conflict. Using more nuanced classifications that incorporate specific goals, such as participating in an upcoming family gathering, may mitigate this problem.

[..] care should be evaluated on the basis of the results it produced — not on the basis of whether a particular treatment might have been expected to promote a patient’s documented goals, given the subjectivity and variability of such expectations. If a patient’s experience between goals assessment and death or the end of follow-up is characterized by infrequent hospitalizations, the absence of life support, and time spent largely at home without evidence of frequent reports of pain, care could reasonably be classified as promoting comfort. [..] As a secondary evaluation, the patient’s caregivers might also rate the care received since completion of the goals assessment using the same categories.

[..] empirical work is needed to determine which outcomes should be assessed subsequent to goal ascertainment — and how long assessment periods should last — in order to reliably rate the care received. [..] it will be important to determine the rates at which reviewers classify patients’ goals and subsequent care as “uncertain,” as well the proportion of care received by patients that is concordant with their goals in the absence of an intervention. High levels of uncertainty in assessments of goals or care received, or a high proportion of care received that is goal-concordant even without an intervention, would reduce the clinical utility of this approach.”

Goal-Concordant Care — Searching for the Holy Grail (2019.10.24)

“Adverse effects of family secrets, a common practice in black culture believed to have historical origins related to slavery, racism, and mistrust, is also important. Gay eloquently describes how when truth is buried “it becomes depression or addiction or obsession or some other physical manifestation of the silence.” Both authors describe bouts with depression, poor body image, extreme diets, excessive exercise, and disordered eating—binge eating, bulimia, and anorexia—commonly thought of only in the context of young white women trying to attain thinness. Food and exercise are sources of freedom and control for Gay and Laymon in lives where many other things are outside their control.

These themes are consistent with contemporary understandings of adverse childhood experiences and their long-term health consequences, originally described by Felitti et al and affirmed by 2 decades of additional research. That said, while many factors described in both memoirs may be commonly shared among black Americans, experiences of trauma, stress, depression, and other psychosocial or environmental risk factors for poor health outcomes are not limited to black individuals, but indeed are experienced among all racial/ethnic groups and at all socioeconomic levels. Also, black Americans are not monolithic.

These books carry vital lessons for clinicians. They teach the error of reducing a patient’s inability to lose weight to anything as simple as nonadherence, and they cue us in to how family, self-esteem, trauma, abuse, deceit, abundance, fear, power, discipline, and addiction affect patients’ eating and bodies. They teach the role of disordered eating in communities of color, a behavior mistakenly stereotyped as being a phenomenon of white women. They teach the importance of paying attention to the why of each patient—the psychological, social, and environmental influences on the body—and the importance of incorporating those factors into obesity treatment. These books make a strong case for trauma-informed care in obesity treatment, an approach recognized by obesity-focused clinicians more than by those in primary care. Early research, suggesting that provision of stress management strategies to highly stressed black women can lead to improved weight loss outcomes, and that greater reduction in depressive symptoms is associated with greater weight loss, provides preliminary support for the idea of incorporating strategies that address psychosocial and mental health factors into obesity treatment.”

Heavy Hunger—Managing Weight and Obesity in Black American Communities

Four in five American internet users have searched for health-related topics, according to a Pew study. That makes searching for health information one of the most popular online activities, next to email and researching products before purchasing them. One in five people say the internet is the first source they consult for information about symptoms and conditions, according to a September 2019 UnitedHealthCare survey.

Contrary to popular belief, consumers can typically trust what they find online. The three fastest-growing online sources of medical information contain contentwritten or curated by physicians. In addition, reputable government sites like the Centers for Disease Control and Prevention and the National Institutes of Health are among the most visitedon the internet.

Wise consumers treat the internet as just one source of medical information. They still tend to defer to the experts. A study from Sheridan College and McMaster University concluded that the quality of a person’s doctor is more influential than internet research in determining whether one agrees with a recommended treatment regimen and sticks to it.

In fact, an informed person who comes to their appointment armed with research can be an asset to a doctor. Physicians today don’t have the time or mental capacity to keep up with the ever-expanding body of medical knowledge. By next year, that body of knowledge is expected to double every 73 days. Focused researchers can consistently unearth studies their doctors haven’t yet seen.

Informed people also make for more efficient appointments. About one-third of doctors spend an average of 15 minutes with each patient. If those people come prepared, with targeted questions about their symptoms informed by the latest research, then both doctor and patient can make the most of their limited time together.

[..] people who conduct research into their own conditions tend to be more compliant with doctors’ orders. Studies show that conducting online health research improves the doctor-patient relationship. Researchers at the University of Leeds found that online research made patients more comfortable with their doctors.”