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How do women with CFS/ME rate quality & coordination of healthcare services? A cross-sectional study

Dolphin

Senior Member
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17,567
Free full text: http://bmjopen.bmj.com/content/6/4/e010277

Health services research
Research

How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study


  1. Anne Helen Hansen1,
  2. Olaug S Lian2
Author affiliations

Abstract
Objective To test the association between self-rated health and self-rated degree of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and CFS/ME patients' assessment of quality of primary care, specialist care and coordination of care.

Design Cross-sectional study.

Setting Self-reported questionnaire data from women members of The Norwegian ME Association obtained in 2013.

Participants 431 women with CFS/ME aged 16–73 years.

Main outcome measure The participants' assessment of quality in primary care, specialist care and in coordination of care (good/very good or poor/very poor). Main explanatory variables: self-rated health and self-rated degree of CFS/ME.

Results Quality of care was rated poor by 60.6% in primary care, by 47.7% in specialist care, and by 71.2% regarding coordination of care. Poorer self-rated health increased the probability of rating quality in primary care poor, particularly among women 40 years and over (OR 2.38, 95% CI 1.63 to 3.49), women with university education (OR 2.57, CI 1.68 to 3.94), and owing to less frequent general practitioner (GP) visits (OR 2.46, CI 1.60 to 3.78). Poorer self-rated health increased the probability of rating quality poor in specialist care (OR 1.38, CI 1.05 to 1.82), but not in coordination of care. A more severe CFS/ME was associated with a higher probability of rating quality in primary care poor (OR 0.61, CI 0.38 to 0.93). Frequent visitors and those with a long GP relationship were less likely to report primary care quality as poor.

Conclusions A large proportion of women with CFS/ME rated quality of care poor/very poor in primary care, specialist care and in coordination of care. The dissatisfaction was higher for primary care than for specialist care. Overall, poorer self-rated health and a more severe CFS/ME were associated with lower quality scores in primary and specialist care, but not in coordination of care. Healthcare services, as assessed by women with CFS/ME, do have a large potential for improvement.


http://dx.doi.org/10.1136/bmjopen-2015-010277
 

Dolphin

Senior Member
Messages
17,567
How would you describe the quality of the medical care you have received from primary care?
How would you describe the quality of the medical care you have received from specialist care?
How do you think the services in the various parts of the support system are coordinated?
I think the questions may mean patients are likely mixing up some current care and also care going back many years. Severity could be a confounder as the more severe one has been left, the more one may complain about how one was treated. So even if one thought the current care was reasonably okay, one still might answer questions with answers saying that the care was poor compared to people who are left less ill.

Also in general:
Across healthcare settings, patient satisfaction or patients’ assessment of healthcare quality is positively associated with better self-rated health and functional status and inversely associated with the complexity of health problems.18–21
So I'm not sure how much we can glean from this research.
 

Dolphin

Senior Member
Messages
17,567
I'm not sure I recall seeing a definition of patient satisfaction before:
Patient satisfaction, defined as ‘an individual’s cognitive evaluation of, and emotional reaction to, his or her health-care experience’,16 is considered an important indication of overall quality in healthcare.17
 

Dolphin

Senior Member
Messages
17,567

Dolphin

Senior Member
Messages
17,567
Frequent visitors and those with a long GP relationship were less likely to report primary care quality as poor.
I'm not sure this proves that a long-term GP relationship by itself leads to better primary care quality. Another interpretation is that when people are happy with their GP, they don't change while if they are unhappy with the care/their GP they do change their GP.

Overall, quality in primary care was more likely reported low by patients with a shorter GP relation and less frequent GP visits. These variables might be intertwined. Previous studies have suggested that continuity of GP care is associated with higher patient satisfaction, 24 and that people in poorer health are more likely to have shorter GP relationships.12 Some of these patients might suffer from ailments that do not fit into specific diagnoses, thus generating dissatisfaction and a search for another GP.28 In this study, 36.2% reported a short duration of their GP relation, indicating that patients with CFS/ME might replace their GPs to a higher extent than the general population.12 In line with our findings, others have reported a positive GP assessment to be associated with increased frequency of attendance.28 This might indicate that once patients have found an understanding GP, they consider GP visits beneficial and therefore visit more frequently.
 

Dolphin

Senior Member
Messages
17,567
CFS/ME patients’ assessment of healthcare services in relation to self-rated degree of CFS/ME is largely unknown, as this measure has hardly been used in previous studies. Self-rated health is a more commonly used but less specific measure as it refers to general health and not specifically CFS/ME-related health. Our finding that poorer self-rated health was associated with lower quality scores confirms those of most previous studies across diagnoses and healthcare settings.18–21 28 It is worth noting that similar findings were slightly weaker for self-rated degree of CFS/ME compared to self-rated health, indicating that self-rated health encompasses a wider range of issues and complexity of health problems, 19 22 23 even for patients with a complex and challenging condition like CFS/ME. This is also confirmed by a no more than modest correlation between these two variables.

I thought that was a little interesting: people can have other health problems.
 

Dolphin

Senior Member
Messages
17,567
In an international comparison of patient-evaluated GP care in 10 European countries, 76% of Norwegian patients viewed care as good/excellent, a score below the study average.29 Only 36.4% of our study participants viewed GP care as good/very good. Despite differences between the studies, both strongly indicate that patients with CFS/ME are less satisfied than the general population. This is reinforced by the fact that there are only women in our study, as women in general are more satisfied with healthcare than men.30 Regarding the notion that communication and the GP–patient relationship are important tools in the treatment of medically contested conditions like CFS/ME,31 this is a cause for concern.
 

Dolphin

Senior Member
Messages
17,567
Slightly more than half of the participants reported the quality of specialist care as good/very good. A Swedish study of outpatient care in all hospital specialties found that on average more than 80% were satisfied, 30 which largely contradicts our findings. Hence, similar to primary care, patients with CFS/ME seem to be less satisfied than patients in general. This is not surprising, since quality of healthcare is often regarded lower by people in poorer health.18 19 21
 

Dolphin

Senior Member
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17,567
We found that quality scores for specialist care were better than for primary care. Previous research reports that many GPs are constrained by the scientific uncertainty of CFS/ME,32 unconfident with diagnosing and treating the condition,33 and worried that the label of CFS/ME might be potentially harmful to the patient.34 Patients with CFS/ME or other medically unexplained conditions, on the other hand, have reported feeling belittled, stigmatised, distrusted, rejected and ignored by their doctors, and that their moral character and the reality of their symptoms are questioned.35 36 These aspects might partly explain the low quality scores, especially in primary care where doctors are likely to be more sceptical towards the CFS/ME diagnosis than those who have specialised in dealing with them.37 We reported in a previous paper that patients do value referrals, 24 which is in accordance with patients’ reports that specialist services provide acknowledgement of their ailments, treatment, better handling of daily life issues and improved dialogue between professionals.38 However, patients with CFS/ME often have to struggle for a referral, 39 40 which might affect the relationship with their GP. Patients in Europe have evaluated GP care more positively in countries without gatekeeping,29 and the Norwegian gatekeeping system could explain some of the low primary healthcare scores.
It would be interesting to have a breakdown based on different specialist/specialist services. For example a more biomedical approach versus a more biopsychosocial/CBT/GET approach.
 

Dolphin

Senior Member
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17,567
This study had some limitations. Our sample may not fully represent women with CFS/ME. First, there might be a selection regarding membership of the patient organisation. Survivor bias may be a part of this, indicating that the healthiest patients will not demand membership to the same extent as those in poorer health.44 On the other hand, the most seriously affected members might have refrained from participating because of disease severity. The direction of a possible selection bias from these factors is not obvious.
 

Dolphin

Senior Member
Messages
17,567
A general population satisfaction study reported that non-respondents were over-represented in groups with lower satisfaction,30 indicating that a possible selection bias might have skewed our study in the direction of better satisfaction scores than would otherwise be found. However, female patients with CFS/ME might differ from this population.36
 

Dolphin

Senior Member
Messages
17,567
In questionnaire data, there is always a potential for recall bias, particularly regarding minor events and the distant past, usually leading to under-reporting.