Results: Medical Gaslighting and Diagnostic Overshadowing of Patients with Generalised Anxiety Disorder in the UK: Evidencing and Addressing the Problem.

SURVEY FINDINGS

We present the survey results in two parts, first for people with GAD (“GAD respondents”) and for comparative purposes, people without GAD (“non-GAD respondents”), and second, for GPs in primary care.

GAD / non-GAD survey

All GAD/non-GAD patient respondents were asked if they had ever experienced problems getting professional medical help for a physical health problem they had reported to a HCP, whether directly because of their GAD (GAD patient respondents) or independently of any mental health condition (non-GAD respondents).

55.7% (132 of 237) of GAD respondents reported they had never experienced problems getting help for a reported physical health condition because of their GAD, meaning that just over 4 in 10 (44.3% or 105) GAD respondents had experienced problems. This contrasted with all 259 of the non-GAD respondents reporting they had problems getting professional medical help for a physical health condition or disease.

For the 44.3% of GAD respondents reporting difficulties getting help, just over half reported experiences of MG as a factor. 53% of this sub-group of GAD patients with problems stated they had not had their symptoms taken seriously by a HCP.  51% claimed they have had their symptoms ignored, denied and/or dismissed by one or more HCP. These compared with 15% and 24% for non-GAD respondents for the same reasons respectively, all of whom reported problems obtaining healthcare for physical health conditions.

In Figure One, we depict the percentage proportions of (the subset of) GAD respondents reporting different forms of MG compared with non-GAD respondents.

Figure One – Percentage of GAD and non-GAD respondents recording “yes” to eight MG/DO statements (GAD-105 respondents. Non-GAD-259 respondents)

Women with GAD in the group reporting problems were especially likely to report MG experiences. 62% of female GAD respondents stated they felt their symptoms were not taken seriously by one or more HCP, compared to 26% of men. Similarly, 61% of female respondents with GAD recorded being ignored, denied, or dismissed by a HCP (compared to 17% of men).

Additionally, around 1 in 5 GAD respondents who experienced problems getting help for a reported physical health condition because of their GAD cited experiences of diagnostic overshadowing. 23% stated they had had their symptoms of a physical condition mistaken for their GAD, and 20% stated that a HCP had not been aware that anxiety can be a symptom of an underlying physical condition. Amongst non-GAD respondents, recorded DO was much lower for the same two reasons, at 7% and 3% respectively.

1 in 3 GAD respondents who experienced problems reported that their GAD complicated their ability to obtain an accurate diagnosis for a reported physical health condition/disease. This compared to just over 1 in 10 (12%) of non-GAD respondents citing problems obtaining a physical health diagnosis due to a (non-GAD) mental health condition. Of interest is the higher reported incidence of DO in younger age groups. Half of GAD respondents aged 18-24 were more likely to report that GAD complicated their ability to get an accurate diagnosis for a physical health condition/disease, compared with 30% of non-GAD respondents aged 18-24.

MG/DO and reported physical health conditions.

Respondents were asked to record the physical health conditions where they experienced MG/DO. Of the 105 people in the GAD group reporting difficulties, there were a total of 274 reports for different physical health conditions (a person could record a problem with more than one condition in the survey). Of these 274, the most common conditions reported were as follows:

·       Sleep conditions, 35 of 105 respondents reported problems (31.4%)

·       Digestive tract (21/105 – 20%)

·       Ear, nose and throat (16/105 – 15.2%)

·       Gynae (15/105 – 15%)

·       Oral, dental problem (15/105)

·       MSK (13/105)

·       Chronic / neuropathic pain (12/105 – 11.4%)

All respondents were asked about the duration and the impact of problems getting medical help for their reported physical health symptoms. People with GAD experienced problems over longer time periods and with more negative impact on their lives. 50% of GAD respondents reporting problems had had difficulties for more than 5 years GAD compared with 18% of non-GAD respondents, and the same group experienced more severe life impacts (42.0%) compared with non-GAD respondents (16.7%).

Improvements to prevent MG/DO

In respect of preventing and dealing with MG/DO, GAD respondents reported that the following would be helpful (they were provided with a list of suggestions):

·       More time with HCPs (desired by 67% of GAD respondents compared with 44% of non-GAD respondents)

·       A means to record/reference what HCPs have told them for use in future appointments with other HCPs (56% / 25%)

·       More face-to-face appointments with HCPs (56% / 48%)

·       Ability to have medical appointments when symptoms are present (56% / 44%)

Finally, GAD respondents suggested the following resources and tools would be helpful in their interactions with HCPs:

·       Having a prepared set of questions to ask (45% GAD compared to 22% non-GAD)

·       Being able to see their medical record (53% / 32%)

·       Help with being calm/composed before appointments (47% / 14%)

·       A helpline for use before or after appointments with medical professionals (32.4% / 16%)

GP survey

Almost all GPs (96%) believe that people with GAD at least occasionally (more so than “rarely” or “never”) experience forms of medical gaslighting or diagnostic overshadowing. 68% of GPs reported this happens very often (24%) or often (44%) for people with GAD. Of particular note, 70% of GP respondents believe that cognitive bias (including unconscious bias) often, very often, or always makes it more challenging for people with GAD to receive a diagnosis and/or obtain access to tests and treatments for their non-GAD conditions.

In respect of consequences, more than half of GPs (53%) report that patients with GAD often, very often, or always discontinue seeking care or professional support for physical health concerns because of challenges experienced in primary care settings. More than 9 in 10 GPs (91%) say that patients with GAD at least occasionally discontinue seeking care. Furthermore, 1 in 3 GPs identify that GAD patients often, very often, or always switch to private healthcare due to their experiences. These findings match those from the patient survey. People with GAD reported they are more than twice as likely to seek private care (43%, compared to 19% of people without GAD). Of concern, respondents with GAD are more likely to stop seeking healthcare altogether (39%, compared to 25% of those without GAD).

The survey identifies that people with GAD seek private health care for three main reasons: 1) problems with the mode, content and the continuity of HCP consultation, 2) inadequate amount of time spent in consultation, and 3) the absence of diagnosis and support for certain physical health conditions. Results suggest that GPs concur. First, over half of GPs (55%) report that the recent shift in the UK from face-to-face to telephone consultations has negatively impacted patients living with GAD compared to the general population. Second, a majority of GPs (66%) believe they have insufficient time to engage with GAD patients. Female GPs are more likely to cite insufficient time (74%) and the lack of continuity of care (57%) as key challenges compared to their male peers (at 59% and 39% respectively). Third, at least half of GPs report that patients with GAD experience more challenges or delays accessing professional help for certain conditions, in particular ME/Chronic Fatigue Syndrome (55%), sleep and sleep conditions (50%), and chronic and neuropathic pain (50%).

As in the patient survey, GPs were asked to evaluate ideas for improving the quality of their engagements and outcomes with GAD patients. Nearly all were rated highly, especially:

·       Having a GP with an extended role or specialist interest in mental health within the practice (85% of GPs surveyed)

·       Patient tools translated into different languages (84%)

·       Extended appointment times for patients with GAD (84%)

·       Increased primary care access to a multi-disciplinary team for patients with GAD (82%)

·       Patient education on anxiety symptoms and their overlap with other health conditions (80%)

·       HCP education on anxiety symptoms and their overlap with other health conditions (80%)

Next, we discuss the above summary findings.