Healthcare Utilization in (ME/CFS): Analysis of US Ambulatory Healthcare Data, 2000–2009, 2019, Bae and Lin

[Andy]

Background: ME/CFS is a complex and disabling illness with substantial economic burden and functional impairment comparable to heart disease and multiple sclerosis. Many patients with ME/CFS do not receive appropriate healthcare, partially due to lack of diagnostic tests, and knowledge/attitudes/beliefs about ME/CFS. This study was to assess the utility of US ambulatory healthcare data in profiling demographics, co-morbidities, and healthcare in ME/CFS.

Methods: Data came from the National Ambulatory Medical Care Survey (NAMCS) and the National Hospital Ambulatory Medical Care Survey (NHAMCS) in the U.S. Weighted analysis was performed. We examined 9.06 billion adult visits from 2000 to 2009 NAMCS/NHAMCS data. ME/CFS-related visits were identified by ICD-9-CM code, 780.71, up to tertiary diagnosis.

Results: We estimated 2.9 million (95% CI: 1.8–3.9 million) ME/CFS-related visits during 2000–2009, with no statistical evidence (p-trend = 0.31) for a decline or increase in ME/CFS-related visits. Internists, general and family practitioners combined provided 52.12% of these visits. Patients with ME/CFS-related visits were mostly in their 40 and 50 s (47.76%), female (66.07%), white (86.95%), metropolitan/urban residents (92.05%), and insured (87.26%). About 71% of ME/CFS patients had co-morbidities, including depression (35.79%), hypertension (31.14%), diabetes (20.30%), and arthritis (14.11%). As one quality indicator, physicians spent more time on ME/CFS-related visits than non-ME/CFS visits (23.62 vs. 19.38 min, p = 0.065). As additional quality indicators, the top three preventive counseling services provided to patients with ME/CFS-related visits were diet/nutrition (8.33%), exercise (8.21%), and smoking cessation (7.24%). Compared to non-ME/CFS visits, fewer ME/CFS-related visits included counseling for stress management (0.75 vs. 3.14%, p = 0.010), weight reduction (0.88 vs. 4.02%, p = 0.002), injury prevention (0.04 vs. 1.64%, p < 0.001), and family planning/contraception (0.17 vs. 1.45%, p = 0.037).

Conclusions: Visits coded with ME/CFS did not increase from 2000 to 2009. Almost three quarters of ME/CFS-related visits were made by ME/CFS patients with other co-morbid conditions, further adding to complexity in ME/CFS healthcare. While physicians spent more time with ME/CFS patients, a lower proportion of ME/CFS patients received preventive counseling for weight reduction, stress management, and injury prevention than other patients despite the complexity of ME/CFS. NAMCS/NHAMCS data are useful in evaluating co-morbidities, healthcare utilization, and quality indicators for healthcare in ME/CFS.

Open access, https://www.frontiersin.org/articles/10.3389/fped.2019.00185/full

 

[Trish]

About 71% of ME/CFS patients had co-morbidities, including depression (35.79%), hypertension (31.14%), diabetes (20.30%), and arthritis (14.11%)

That diabetes rate around 20% strikes me as high. I did a quick google search that suggested population frequency around 7%, but maybe it's simply a reflection that ME/CFS patients are more likely to visit a doctor if they have concerns about a co-morbidity like diabetes as well, rather than if they don't. And age group might be significant too.

 

[Mithriel]

The 71% co-morbidities rate makes it look like ME patients are going because they have other things. I never spoke with my GP about treating my ME - we just agreed that medicine does not have all the answers yet. (He retired and I was forced to explain my illness to his replacement who was sympathetic enough but had nothing to offer) However over the years I have been treated for other things. In particular I attend a diabetes clinic with a nurse practitioner every 3 months.

The regular blood tests for my diabetes give me the sort of regular examination everyone with ME should get but without that other disease I would never see a doctor. Why bother when it is difficult and you know nothing will come of it.

 

[DokaGirl]

The lack of health care for pwME negatively affects some carers' attitudes about health professions.

In some cases, so much so that carers avoid engagement with health professions for varying medical needs of their own.