Coping high utilisers (Participants 2, 8, 11, 15)
All patients in this group, except Participant 2, had current and/or past family dysfunction (see Table
3Themes 1, 2, 3) yet they all had achieved significant success in their lives and a degree of psychological insight. We found no evidence in their transcripts that any of these participants had previously been labelled with MUS by their providers. Three of the four participants in this group had moderate chart-rated MUS. Basic demographic characteristics are listed in Table
4. A typical member of the group, Participant 15, was a 59 year old female who mentioned in her opening statement that she had been raised in a dysfunctional family. Her father drank and fought a lot with her mother, and she felt hassled as a middle child. She was molested by her father's best friend when she was seven years old and subsequently endured 2 abusive husbands. Yet, like all others in this group, she left the impression that any resulting internal conflicts had been resolved -
"I have now dealt with it (sobbing), I have; I have been in therapy for it"
Table 4
Three patient consultation groups with demographic and clinical characteristics
Identification numbers | 2, 8 11, 15 | 1, 4, 6, 9, 10, 13, 14, 17, 18 | 3, 5, 7, 12, 16, 19 |
Mean age (standard deviation) | 54.5 (9.8) | 47.0 (10.9) | 53.2 (6.9) |
Female gender N (% of patient group) | 3 (75) | 8 (89) | 5 (83) |
≤ 12 years education | 3 | 2 | 0 |
14 years education | 1 | 4 | 1 |
≥ 16 years education | 0 | 3 | 5 |
Number of chart-rated severe MUS (%) | 1 (11) | 5 (56) | 3 (33) |
Number of chart-rated moderate MUS (%) | 3 (30) | 4 (40) | 3 (30) |
Mean number of visits/year for 2 years (standard deviation) | 11.0 (2.7) | 11.4 (3.1) | 16.0 (9.6) |
Mean proportion of visits MUS (standard deviation) | 0.68 (0.24) | 0.66(0.22) | 0.74 (0.02) |
Three (Participants 8, 11, 15) of the four coping high utilisers were both emotionally expressive and psychologically insightful (see Table
3). For example, Participant 15 sobbed appropriately as she shared painful memories, and engaged pleasantly in lighter parts of the conversation. She talked about learning to support her adult children without assuming blame for their bad choices. Similarly, Participant 8, a 54-year old female, believed strongly that effective coping required the right
"attitude." She found it remarkable that
"no one [in her family] ever talked." She, on the other had,
"talked about everything." Participant 11, a 47-year old male learned from his brother that,
"most of the problems [he had were] up here (pointed to head),
and if some day [he could] control that, then [he] wouldn't have the problems... the aches and pains come with that." Although she was felt to be neutral with respect to Theme 6 (psychological insight, see Table
3), Participant 2, the other coping utiliser, described herself as a happy and content person with excellent relationships. She was visibly happy, especially when she talked about her husband.
Coping high utilisers did not focus on their symptoms or appear to feel entitled (see Table
3). When they did talk about symptoms, their descriptions were concise. For example, in describing her back pain a recently retired factory worker (Participant 15) explained,
"I would hurt within two hours [of bending over and underneath cars at work]." Moreover, coping high utilisers were resourceful (see Table
3, Themes 9 and 10) and/or altruistic (Theme 11). For example, in addition to quitting a lifelong habit of heavy drinking, Participant 15 was able to quit smoking and later, to adopt a diabetic diet. She enjoyed her work and planned to volunteer after her upcoming retirement. Unlike participants who sought excuses to miss work, she actually felt ambivalent about retiring. Similarly, Participant 8 wrote poetry and managed a local store while pursuing a professional degree. She described how she engaged in various recreational activities to help cope with illness; and she was altruistic (as were Participants 11 and 15) -
"I was there when [my stepfather] had his surgery... My oldest brother suffers from post-traumatic stress syndrome... I have been doing a lot to help him."
Despite their ability to function, these patients had a mean of 11 visits per year for 2 years prior to enrolment (see Table
4). The majority of these visits (68%) were for chart-rated MUS. Although all subjects in the study had at least two years of high utilisation (most had three), it is possible that at the time of the interview, these patients had improved on the basis of treatment and/or other factors and were on the way to low utilisation. For example, Participant 15 had experienced lot of musculoskeletal symptoms during initial recruitment for the randomized controlled trial, but she noticed fewer symptoms after retiring from her factory job shortly before the interview. Some visits were the result of delay, or difficulty in diagnosis. For example, Participant 8 had multiple consultations, testing and referrals for excruciating chest pain. Eventually, she was told she had a leaking breast implant, although no definitive diagnosis was made before breast implants were surgically removed. Many of these visits were driven by the provider for the purposes of diagnosis, treatment, and/or monitoring. All participants had co-morbid medical or psychiatric disease that required periodic monitoring and need for medication. Visits that were previously scheduled for monitoring organic disease may have been used to assess or monitor a self-limiting acute illness. For example, Participant 15 who had visited the doctor the day before for shoulder pain said,
"He put me on some medication...for two weeks because I have to go back and see him in two weeks, because he is um, I have to go back every three months for my blood sugar." Thus, a visit designated "primarily MUS" on the basis of documented consultation activity may have originally been scheduled by the physician for follow-up of organic disease.
Coping high utilisers did not appear to have significant health anxiety (see Table
3, theme - health anxiety); and some claimed to generally limit the number of times they sought consultations. For example Participant 8 noted that she was not
"the type of person who runs to the doctor every time I get a pain. It's really got to be excruciating, you know, where I think, ok, this has been going on for a couple of weeks." However, they admitted to having unmet cognitive needs concerning diagnosis, treatment, and/or prognosis. For example, Participant 2 denied that she was worried about misdiagnosis but said,
"I guess my main concern is, yes, an explanation. Once I have an explanation, then if there's a treatment process, then people know where to go with it. As long as it is unexplained, then there's a question in my mind and how do you treat something that you don't know what it is?" Similarly, Participant 8 was not impressed with the explanation given for an incidental finding after multiple chest x-rays:
"I don't know how many x-rays I had that year... I told the technician, "I ought to glow in the dark... They told me it was inactive disease. How can I have an inactive disease when I never had an active disease?" Her scepticism was evident in another section of her narrative:
"That is your standard answer, you know. "Well, we really don't know, understand fully these things." And I am like, you know, okay!" Despite their unmet needs, all coping high utilisers reported having good relationships with their current providers. Only Participant 11 expressed dissatisfaction with his healthcare provider(s) (see Table
3, Theme 8) by stating that he had considered leaving the practice because some providers lectured him about his use of pain medications.
Classic high utilisers (Participants 1, 4, 6, 9, 10, 13, 14, 17, 18)
Like coping high utilisers, these participants had current and/or past family dysfunction (see Table
3, Themes 1, 2, 3). However, these classic high utilisers also perseverated on their vague symptoms (Theme 7), demonstrated little psychological insight (Theme 6) and/or expressed strong entitlement (Theme 4) that they should be excused from normal social obligations. Six of the nine participants had previously been labelled with an MUS diagnosis (five with fibromyalgia and one with irritable bowel syndrome). One had been told she had an "autoimmune disease" from breast implants and two had not received any MUS label. Of the two who had not been previously labelled (Participants 13 and 17), one had chronic neck and back pain which the patient attributed to a motor vehicle accident in 1996. Both of the unlabelled patients had moderate chart-rated MUS, suggesting that most of their MUS for the recruitment period were minor self limited illnesses. Five of the nine classic high utilisers had severe chart-rated MUS and four had moderate MUS. Seven of them had completed at least 14 years of formal education. Other demographic characteristics are listed in Table
4.
Unlike coping high utilisers, these patients typically did not appear to have recovered from the traumatic experiences they talked about. One middle aged female part-time insurance agent (Participant 4) said she was inexpressive emotionally because "I think I shut my feelings off quite a while ago. My dad died when I was 10..." Participant 1, a 44-year-old single mother described how she and her siblings tried to cope with constant parental discord: "I can remember being a little kid and they would come home late at night screaming and arguing and throwing things. We'd wake up and that was kind of scary to go through that..." Asked how she and her siblings responded, she simply said, "We would try to go back to sleep." As an adult, she continued to use avoidance, "I come home from work and everything's a mess and I don't want to poke in the mess and figure out what... I just escape." Participant 6 admitted there were a lot of unresolved issues in her family, "there are a lot of things that I probably haven't even told my family that I went through, my brothers and my sisters, but I went through a lot." Participant 18, whose affect had been flat through out the interview, was visibly upset when she said: "mom and dad would argue sometimes, and I absolutely hated to see it and I hate dissension... Dad will never argue until mother just, you know, pushed him so far, and dad was soft spoken; mother was argumentative, she, and I think she is... had a mental problem." Participant 9, a 41-year old female administrator who was adopted when she was two years old, was still disappointed by parental favouritism, "They can never give me anything materialistic that would equal what they sacrificed for [sister]"; and neglect, "They had an opportunity to take care of me... but they didn't, and I have a lot of struggles from that." Participants 1, 4, 6, and 18 all described periods of loneliness and isolation, and at least one suggested that she went to her doctor because she didn't think it was fair to talk to anyone else about her problems.
Unlike the past trauma of coping high utilisers, some of the experiences (Themes 1, 2, 3) described by classic high utilisers were temporally linked to their physical symptoms. For example, Participant 14 who was raped and abused physically by her boyfriend when she was 16 years old subsequently developed chronic pelvic pain. Similarly, Participant 6 suffered physical abuse at the hands of two consecutive husbands and reported concurrent medically unexplained chronic musculoskeletal pain for over 12 years. Surprisingly, she seemed unable to imagine a possible association with abuse, focusing instead on a previous motor vehicle accident. When asked directly if she felt her husband's abuse might have contributed in any way to her symptoms, she said, "
I had no lingering pain from anything he did..." This apparent lack of general psychological insight was typical of classic high utilisers (see Table
3, Theme 6), who wove and coupled descriptions of symptoms with descriptions of their jobs, housework, spouses, and/or children, with no evidence that they were aware of any possible associations.
Transcripts of all labelled classic high utilisers also revealed a pervasive emphasis on vague symptoms (see Table
3, Theme 7). The following transcript fragment from Participant 10 who had fibromyalgia for over 10 years illustrates how some patients overwhelmed their providers with their chaotic narratives:
"I go in and I say, 'I can't sleep, and it kind of comes and goes... ' One thing goes out of whack and I feel a lot of things so I come in a lot of times and ... I need to get them all in, I need to tell her everything that is going on... I think in the beginning I might have overwhelmed her." The patients talked about how painful and debilitating their symptoms were, often in the context of their care-seeking and/or their normal social roles. They reported often that they could not or would not perform normal social obligations like housework or grocery shopping (Theme 4) because of pain or fatigue. Participant 6 summed up their collective attitude, "
I'm just gonna feel rotten today and not do very much. I am in pain; the more I do, the worse the pain gets, but I will just take the day off." They talked about how they would pay later with more symptoms if they relented and engaged in normal recreational activities or chores. A few patients expressed regret about this, but more often, they expected to be excused and/or to be relieved by reluctant family members (see Table
3; Theme 4). Thus, compared with coping high utilisers, classic high utilisers appeared to be much more disabled by their symptoms. Indeed Participants 1, 4, and 6 (who had the highest ratings on symptoms focus, entitlement, and lowest on psychological insight) did not demonstrate any achievement, action, or altruism (see Table
3; Themes 9, 10, 11). Instead of finding meaning in their work, they talked about getting time off, or quitting their jobs because of their debilitating symptoms.
As with coping high utilisers, utilisation among these patients was driven primarily by multiple testing, referrals, and empirical treatments. For those who were eventually given a label, diagnosis was often delayed by at least two or three years. Typically, they saw multiple doctors who tried different things, ordered many tests, referred them to other doctors, until eventually someone "found trigger points" or simply labelled them as having fibromyalgia. Unfortunately, eventual diagnosis was not coupled with any perceived change in management or strategy. According to Participant 18: "No [the doctor's management didn't change], I never really did anything [different] except try to take really good care of myself, rest, eat properly, which I kind of always have anyway." Participant 14 suggested her doctor made the diagnosis for a purely pragmatic reason, " [he said], 'I know you are...that you have pain and I know that you have physical representations of that pain. I feel your back, I feel everything out of whack, I know...' he goes, 'Am I absolutely positively sure that it's fibromyalgia?' 'No, I am not.' He goes, 'but that is a diagnosis; it does get you through the system, and you know, then we don't have to deal with all the other crap'..." Not surprisingly, she was not happy with the diagnosis: "I actually had hoped at one point that I had something different, because then it would have been fixable. I was a little bit upset, actually, when I saw the diagnosis for the fibromyalgia because it is a very symptom-based thing and you know, they don't know what causes it, they don't know this, they don't know that. And I was sort of like 'why are you giving me that diagnosis?"'
All others were relieved, at least initially, to finally have a diagnosis. As Participant 18 said to herself, "Hah there is a reason. I am not losing my mind!" Yet, these labelled patients continued to seek care, often for help with managing their symptoms. For example, Participant 6 said, "sometimes I go in, because I hurt so badly. I had real bad headaches and neck aches and you know, he said, well, you know, you got fibromyalgia. What am I gonna say? Haha... You know, well, take it out. Haha... You know, can't you cure me of this mess? And I won't take a lot of pills" Participant 18 also desired something other than medications, "I don't want more drugs but I want pain management." Some patients wanted suggestions for self-management and/or wondered privately whether they would benefit from procedures or surgery. Participant 1 also wished (as did several others) that she had more time "to sit down and tell a story more like this [interview]. Sit down and say this is what's happening to me." She wanted more guidance: "I feel like doctors come in the room and they talk to you and they give you medicine and they leave and the rest of it is up to you." She explained how after one sequence of multiple testing, referrals and empiric treatments, she finally realized (without the help of her doctors) that she needed a different approach: "I decided that if everything is normal [with her shoulder], then I need to take control or be more in charge, take on a new attitude. I have to drop this, "there's something wrong, I need surgery again," which is something that I felt through all the back and forth and all the tests. So, I decided to bury that, because obviously it wasn't true. And, I started to take myself off of the pain medication." This showed that when present, psychological insight, though rare, was beneficial even in this group. Unfortunately, this patient's breakthrough did not curtail clinic visits for her other symptoms.
Participant 14, a law school graduate, was uniquely assertive among this group; and she clearly felt entitled to seek all the care she desired, "my place of employment pays very good money for me to have this kind of health care. And I want my health care; I don't want to be told I don't need this." None of the other classic high utilisers displayed this particular kind of entitlement.
Worried high utilisers (Participants 3, 5, 7, 12, 16, 19)
Members of this group had characteristics of coping high utilisers (Participant 7), classic high utilisers (Participant 16), or both (Participants 3, 5, 12, 19). Similarly, half had moderate chart-based MUS and half had severe chart-based MUS (see Table
4). However, unlike members of either coping or classic high utilisers, all except Patient 16 had health anxiety (Theme 5); and all except Patient 5 complained about their healthcare (Theme 8). On average they had 16.0 (standard deviation = 9.6) visits with 75% MUS/visit. They all had at least 14 years of formal education (five had 16 or more); and only one (Participant 7) had previously been labelled with MUS (IBS).
Participant 12, the highest attendee of all 19 patients, was a highly accomplished 52 year old female with unlabelled MUS, who visited her primary care provider 35 times/year for "a lot of ongoing little things;" 85% of these visits were for MUS. She knew of no co-morbid chronic medical or psychiatric disease. She talked about how unpleasant it was to watch her mother die from misdiagnosed metastatic cancer and reported other significant family history of cancer and cardiovascular disease. She was candid both about her anxiety, "you look at your history and you think, 'oh, man, you're a walking disaster here, waiting to happen... When something happens, if I get a toe injury or whatever of course the first thing you think is "Oh my God I'm..." and about how the anxiety caused her to demand excessive care: "you think gee if they could miss it twice. That's a pretty scary thing and you know, in fact, a little while ago, I insisted that they take out a lump; I've had like five lumpectomies. And you know they said, 'it's nothing,' you know, 'you don't need to worried about it.' I went to see [surgeon], and he examined it and he did a needle biopsy, and said, 'I think it is fine.' And I said: 'I think' isn't good enough. I want it out of there." Participant 7(who had 14 visits/year) also was frank about how anxiety drove her utilisation: "I get too nervous, stressed, and then I feel all kind of things, you know...sometimes I wonder myself if my symptoms are real, you know. But I do feel them... I get the anxious, you know, and then everything that happens, for example, if I get anything that wasn't here, then I want to see the doctor because I am worried that it could be something bad. I mean that not that I am making up things because for example, if I have a swollen ankle, I'm not making it up, it's there. But um sometimes I think that I worry too much..." Interestingly, neither of these patients remembered talking openly with their providers about their anxieties or the reasons for them. When asked directly whether she had discussed one of her fears with any of her doctors or nurses, Participant 7 said, "No. They don't spend time with you; they don't; they are in a hurry, always. They are in a hurry. When they tell me that I have a doctor, I don't feel like I have a doctor..." She went on to complain about how difficult it was to see her own doctor. All worried high utilisers expressed similar dissatisfaction (Theme 8), usually related to limited access to healthcare. Participant 9 wondered whether her providers had a financial conflict of interest, "Do you get an extra little money in your pay check or something for finding disease; I mean, what's the scoop here, you know?" Similarly, Participant 7 thought that the only reason she was expected to see a nurse practitioner for routine gynaecological care instead of a specialist was "to save money, because that is the only thing, there is no other excuse, it is just to save money." She also believed her providers were reluctant to order tests, because they were "following some orientation [from insurance companies]." When asked how she felt about this, she said, "I think this is bad... I feel helpless when it comes to doctors because I don't know where to go to complain... Frustration is the biggest word in my life, just about everything." And this patient, at least, was convinced that "frustration" was the root cause of her symptoms: "As a result of all the frustration, I have high cholesterol level, I get too nervous, stressed, and then I feel all kind of things..."