Jason et al: Housebound versus nonhousebound patients with ME/CFS

mango

Senior Member
Messages
905
Likes
4,975
Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome

Tricia Pendergrast1⇑, Abigail Brown1, Madison Sunnquist1, Rachel Jantke1, Julia L Newton2, Elin Bolle Strand3, Leonard A Jason1

1Center for Community Research, DePaul University, USA
2Newcastle University, UK
3Oslo University Hospital, Norway Tricia Pendergrast, Center for Community Research, DePaul University, 990 W. Fullerton Ave. Suite 3100, Chicago, IL 60605, USA.

Abstract
Objectives
The objective of this study was to examine individuals with myalgic encephalomyelitis and chronic fatigue syndrome who are confined to their homes due to severe symptomatology. The existing literature fails to address differences between this group, and less severe, nonhousebound patient populations.

Methods Participants completed the DePaul Symptom Questionnaire, a measure of myalgic encephalomyelitis and chronic fatigue syndrome symptomology, and the SF-36, a measure of health impact on physical/mental functioning. ANOVAs and, where appropriate, MANCOVAS were used to compare housebound and nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome across areas of functioning, symptomatology, and illness onset characteristics.

Results Findings indicated that the housebound group represented one quarter of the sample, and were significantly more impaired with regards to physical functioning, bodily pain, vitality, social functioning, fatigue, postexertional malaise, sleep, pain, neurocognitive, autonomic, neuroendocrine, and immune functioning compared to individuals who were not housebound.

Discussion Findings indicated that housebound patients have more impairment on functional and symptom outcomes compared to those who were not housebound. Understanding the differences between housebound and not housebound groups holds implications for physicians and researchers as they develop interventions intended for patients who are most severely affected by this chronic illness.

Published online before print April 28, 2016, doi: 10.1177/1742395316644770 Chronic Illness April 28, 2016 1742395316644770

http://chi.sagepub.com/content/early/2016/04/22/1742395316644770.abstract
 

JaimeS

Senior Member
Messages
3,408
Likes
12,223
Location
Silicon Valley, CA
Oh God it takes decades to study housebound cfsers and in the end they just give them a survey in which they indicate they are in too crappy condition to leave the house. Nobel prizes all around :p
Study showed a bit more than that! In general, this was an advocacy effort: a 'see, they really are as sick as they say'. However, they discovered a few interesting tidbits besides just that, because they gathered a lot more data than just that data.

Honestly, I thought the same as you, though, @panckage , when I was first looking at it. The summary doesn't do a good job describing the study's scope.

I didn't touch on a lot of some of the weirder stuff in the article, though, like the fact that it showed that UK patients referred by physicians with a diagnosis of ME/CFS had a significantly higher likelihood of psychological dysfunction than their US or Norwegian counterparts.

I do wonder if it's due to gaslighting. Since many physicians in the UK consider ME to be a psych diagnosis, they are essentially telling patients that their reality is wrong, and should better match the physician's reality.

I didn't feel I could really address this in the article, because I have no idea why this was the case (though I have some theories). This was a 500+ people study, though, so we can't toss it out without thinking about it more carefully.

(Sorry if this doesn't match what you read initially, I edited it heavily.)

-J
 
Last edited:

JaimeS

Senior Member
Messages
3,408
Likes
12,223
Location
Silicon Valley, CA

PennyIA

Senior Member
Messages
728
Likes
1,691
Location
Iowa
I don't really have time to review the study, but I wonder - did they touch on relapse/remission at all?

For example, I've had *SOMETHING* for 10 years. Within that 10 year period I've had 3 episodes where I was housebound. Right now I'm well enough to work (but not too much else). So, right now, I'm definitely not housebound, but that changes when my symptoms worsen.
 

JaimeS

Senior Member
Messages
3,408
Likes
12,223
Location
Silicon Valley, CA
did they touch on relapse/remission at all?
To some extent, as in they discussed relapsing-remitting factors and identified how many described themselves as having the relapsing-remitting form of the illness. As the article on #MEAction points out, they discovered that people who are 'severe' are less likely to have the relapsing-remitting form of the illness, or consider themselves to.

At the same time, when I read that, I wondered if people who were severe simply couldn't imagine feeling well again, or saw their illness as a downward spiral when in a year, they might have a very different story.

I wonder, @PennyIA ... if you were asked during one of those severe episodes, would you have characterized your illness as relapsing/remitting? I know that may be hard to say for sure, since you aren't 'there' right now.

-J
 

PennyIA

Senior Member
Messages
728
Likes
1,691
Location
Iowa
I wonder, @PennyIA ... if you were asked during one of those severe episodes, would you have characterized your illness as relapsing/remitting? I know that may be hard to say for sure, since you aren't 'there' right now.

-J
I know that if I had been asked during my first relapse my answer would have been VERY different than it is now - because I was in that always getting worse and no one can help me stage. AND in fact, during my first remission, I might have also said... no, I think I'm recovering. After the second crash even... I might have been doubtful it fell into relapse/remitting pattern... it took going through them multiple times in order for me to see it as a pattern as opposed to just... oh, I found something and it seems to be helping me (wahoo... look, not so sick any more).
 

JaimeS

Senior Member
Messages
3,408
Likes
12,223
Location
Silicon Valley, CA
I know that if I had been asked during my first relapse my answer would have been VERY different than it is now - because I was in that always getting worse and no one can help me stage. AND in fact, during my first remission, I might have also said... no, I think I'm recovering. After the second crash even... I might have been doubtful it fell into relapse/remitting pattern... it took going through them multiple times in order for me to see it as a pattern as opposed to just... oh, I found something and it seems to be helping me (wahoo... look, not so sick any more).
Exactly. I think when you're in that severe place, you simply wouldn't characterize your illness as relapsing-remitting. It's really hard to see the other side of that tunnel.

This also may be a factor: often we are sickest when we still don't know what's going on. I was sickest at the start of my illness, and had no clue how to help myself. Finally, if Hornig et al. is correct, it's possible that we all go through that acute stage early on, with hyper-inflammation, etc., before we 'recover' a bit, before our immune system is suppressed. I wonder how many of those who said 'severe' and 'I don't relapse/remit' had been sick less than three years.

I'm not criticizing the study, which I think is insightful. They can't test for everything in the universe. Just wondering what the results would have been! :)

-J
 
Messages
3,777
Likes
14,737
Location
Monmouth, UK
The 25% (comment, analysis and ramblings)

Short version: The study provides support for a 25% rate of housebound/bedbound patients, based on a sample of over 500 patients from three different countries. The sample is likely to miss both the least severe and most severe cases, which increases the uncertainty.

An earlier study based on surveys of UK GP practices, likely to be more representative, didn't directly measure housebound status but supports a figure of at least 25%.
There's a group in the UK specifically for the severely-affected (I used to be a member, when I was, and it was a huge help). It's called the 25% Group, the name taken for the proportion of patients either bedbound or housebound. I'd never been able to find peer-reviewed evidence for the 25% figure*, though it seems to be widely accepted and I have no good reason to challenge it. Peer-reviewed, published support for the figure would give it more weight eg in advocacy work - and 25% is a shocking figure.

[* this paper cites a 1990 book co-authored by Dr David Bell, and a 2001 Action for ME membership survey, that I can't access]

But this study new does provide some evidence for a 25% figure, which I thought might be a useful reference
Results Findings indicated that the housebound group represented one quarter of the sample,
The actual figure in this study is 128/537=23.8%, ie a quarter.

The study said:
Housebound status. The DSQ includes a measure that asks participants to describe their fatigue/energy related illness.25 Participants that responded either ‘‘I am not able to work or do anything, and I am bedridden,’’ or ‘‘I can walk around the house, but I cannot do light housework,’’ were classified as Housebound. Participants that responded ‘‘I can do light housework, but I cannot work part-time,’’ or indicated more functioning (participating in family responsibilities, working part-time or fulltime) were classified as not housebound.
How representative is the sample of the wider patient population?

OK, so this isn't necessarily a representative sample - and as you can see below there are substantial differences between the samples on average age (35-52), proportion who were still working (10%-37.5%) and those with a post-grad qualification (10%-40%). There are no separate figures for the proportion who were housebound, but presumably differences would broadly reflect employment rates.

DePaul sample (USA), n=216 (39% of the total)
This sample was drawn from adults self-identifying as having CFS, ME, and ME/CFS. In order to accommodate participants unable to attend a clinic, a variety of Institution Review Boardapproved recruitment methods were implemented. These methods included posting on internet forums, visiting support groups, and contacting individuals who had expressed interest in past or future research studies at DePaul.

84% female, mean age 52, 40% had post grad education (so not very representative), 13.5% working part of full time.

Newcastle (UK) clinic sample, n=98
Diagnosed from referrals to a specialist clinic
83% female, mean age 46, 21% post-grad, 37.5% working part or full time

Norway 1, self-managment trial, n=174
Participants in a randomized trial of a CFS self-management program. Participants were recruited from various sources, including physicians, waiting lists for patient education programs, and CFS patient organizations in the communities surrounding Oslo. Participants were required to be at least 18 years old with a diagnosis of CFS by a physician

87% female, mean age 43, 10% post-grad, 10% working part or full time

Norway 2, inpatient and outpatient clinic, n=63
The second Norway sample was composed of inpatients medical and outpatients at a multidisciplinary ME/CFS Center. Clincial diagnosis. Eligible participants were between 18 and 65 years of age

83% female, mean age 35, 11% post-grad, 19% working part or full time

It's likely that clincs miss out on less severe cases, which might never get referred. Self-selected samples like the DePaul convenience one, are similarly likely to underrepresent less severe cases. That could lead to a misleadingly high proportion of severe cases in these samples. On the other hand, many/most bedboud patients won't be able to attend clinics so are effectively excluded from the specialist system as home-visits are virtually non-existent (in the UK at least). So that will lead to undercounting.

As there could be biases both ways (over and undercounting the proportion who are housebound), that adds more uncertainty around the figure, but is no reason to reject it ie this is some evidence, from an international sample of 500+ patients, that supports a 25% figure for the housebound/bedbound.

UK GP study looking at functional impairment (Nacul 2011)
An earlier study in the UK is based on GP practices so is more likely to be representative of the wider patient population. (Though practices were chosen for having GPS who had experience of diagnosing mecfs so weren't entirely representative of the UK population, and diagnosis wasn't independently confirmed by specialist physicians.)
The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers | BMC Public Health | Full Text

While this doesn't measure housebound status, it gives SF36 survey scores, which gives clues.
25% of patients scored 10 or less on the Physical Function subdomain. You get ten points for being able to wash and dress, but not, eg climb a flight of steps or walk a block - even with difficulty. So you would expect all of them to be housebound, especially as some will score less than ten (struggle/can't do personal care). In fact, it may well be more 25%, but you can't tell from the data provided (interquartile range).

The poor level of functioning is supported by (at least) 25% scoring 0 for 'Role Physical', which means physical health problems interfere with everything you do, and 25% (or more) scoring 12.5 (or lower) for Social Functioning, which equates to your health interfering quite a bit/extremely with social activity with friends and family.

(SF-36® Health Survey Scoring Demonstration)

I'll stop there, this is already too long and geeky by far.
 
Last edited:

slysaint

Senior Member
Messages
2,124
Likes
11,176
Talking of statistics; ever since I was diagnosed (15 years ago) the figure of '250,000' ME sufferers in the UK has remained the same.
I don't know if this is the case for other countries(?), but it implies that people are recovering as fast as others become ill or are diagnosed. So where are all these people who have recovered?
 

panckage

Senior Member
Messages
720
Likes
886
Location
Vancouver, BC
Talking of statistics; ever since I was diagnosed (15 years ago) the figure of '250,000' ME sufferers in the UK has remained the same.
I believe I read somewhere on the forum that the UK does not count me/CFS cases in the Healthcare system so the numbers should be just estimates
 
Last edited:

Dolphin

Senior Member
Messages
17,555
Likes
28,235
  • [URL='http://forums.phoenixrising.me/index.php?members/jaimes.18378/' said:
    JaimeS[/URL]'s summary]The sicker an ME patient becomes, the less likely they are to believe their symptoms are ‘in their head’.

The introduction also gives information on another study:
Wiborg et al.15 also sampled patients with CFS and found those who were housebound had increased impairment, levels of daily fatigue, patterns of passive activity, and somatic attributions than those who were not housebound.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Start:
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) affect more than one million people in the United States.1 Many patients face difficulties including identity loss, disconnection from social networks and issues accessing medical care.2,3 The prognosis for patient recovery is relatively poor.4–7 In addition, patients’ quality of life is severely affected in areas such as marital and family relationships, financial security, daily routines, hobbies, and stamina.8,9 In a study of several chronic diseases including cancer, stroke, schizophrenia, and renal failure, patients with ME and CFS had the lowest median quality of life.10 Patients report functional limitations that are as debilitating as, or even more so, than Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease.9,11 Only 13% of patients are able to maintain full-time employment, and 25% or more are confined to their homes (housebound) or completely bedbound.12,13
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
A limited number of studies of patients with ME and CFS who are housebound have been drawn from larger population sizes, obtained through questionnaires distributed by advocacy organizations. In these studies, respondents reported considerable difficulties accessing basic services, social isolation, a lack of sympathy/acceptance of their condition, misdiagnosis, and ineffective treatment options.16,17
 

Dolphin

Senior Member
Messages
17,555
Likes
28,235
Interesting point about personality testing:

There has been one published study with a robust sample size of 124 severe patients.18 This study assessed premorbid personality components as well as pre-illness exposure, occupation, immunizations, allergies, and infections. Additionally, researchers evaluated the effects of early stage illness management and relationship with medical practitioners. Findings from this study indicated numerous risk factors for severe ME and CFS, including being a homemaker or student, a family history of ME or CFS, and reported exposure to chemicals in the home.19 However, the personality testing instrument used in this study had not been validated for use by people with ME or CFS, nor was it designed for use with achonically ill sample.20,21 Participants were instructed to reflect on their prediagnosis personality, but this introduces self-report and recall bias consideringmany patients had been sick for years or decades.

19. Goldberg LR. A broad-bandwidth, public domain, personality inventory measuring the lower-level facets of several five-factor models. Pers Psychol Eur 1999; 7: 7–28.

20. Goldberg LR. The comparative validity of adult personality inventories: Applications of a consumer- testing framework. In: Briggs SR, JM Cheek, Donahue EM (eds) Handbook of adult personality inventories. New York: Plenum, 2001.

21. Goldberg LR. A scientific collaboratory for the development of advanced measures of personality and other individual differences. International Personality Item Pool.
 
Last edited: