Research Paper
Illness perceptions and negative responses from medical professionals in patients with fibromyalgia: Association with patient satisfaction and number of hospital visits

https://doi.org/10.1016/j.pec.2017.08.014Get rights and content

Highlights

  • We conducted a postal survey of patients with fibromyalgia.

  • Dependent variables were patient dissatisfaction and number of hospital visits.

  • Both were correlated with poor treatment control and physician discounting.

  • Patients’ negative emotions did not correlate with either dependent variable.

  • Physician respect and effective treatment should improve the patient experience.

Abstract

Objective

To examine whether illness perceptions among patients with fibromyalgia and negative responses from medical professionals correlate with their satisfaction with their physicians or with their number of hospital visits.

Methods

Questionnaires were sent by post to members of the Japan Fibromyalgia Support Association. Measures collected included, as independent variables, the Brief Illness Perception Questionnaire and the Illness Invalidation Inventory; and as outcomes, the Patient Satisfaction Consultation Questionnaire and the number of hospital visits.

Results

We analyzed data from 304 patients. Multiple logistic regressions showed that perception of poor treatment control and the experience of being discounted and misunderstood by medical professionals were strongly correlated with dissatisfaction with attending physicians. Patients who perceived poor treatment control visited the hospital fewer times, while patients who reported being discounted by medical professionals visited more times. Patients’ negative emotions correlated neither with patient satisfaction nor with the number of hospital visits.

Conclusion

Treatment effectiveness and the respect accorded to patients were the key factors significantly correlated both with patient satisfaction and the number of hospital visits.

Practice implications

Physicians should not emphasize only patients’ negative psychological status but also should convey a respectful attitude and help patients understand their current treatment is useful.

Introduction

Fibromyalgia (FM) is a disorder of unknown origin characterized by widespread pain and a wide range of concomitant symptoms. FM is diagnosed using the 1990 diagnostic criteria established by the American College of Rheumatology [1], although there is controversy about the objectivity of these criteria [2]. This leeway for subjectivity in application and interpretation can lead to communication problems between patients with FM and their physicians. Physicians tend to doubt the legitimacy of the FM diagnosis and hence about their patients’ experiences [3], [4], [5]. This characteristic difficulty in medically unexplained symptoms (MUS) is potentially an important factor influencing other variables. Thus, interpretation of the illness is an important factor because it can affect patient satisfaction and consultation behavior, such as hospital visits. At the same time, considering patients’ negative experiences in clinical encounters is also important, especially in controversial diseases such as FM.

To understand patient interpretation of illness, the concept of illness perception is useful. The basis of this concept derives from Leventhal’s Self-Regulation Model of Illness [6], [7]. Affected individuals form cognitive and emotional representations of their illness, and these representations become the basis of subsequent coping behavior such as hospital consultation or self-evaluation. Both qualitative and quantitative scales to measure illness perception have been developed [8]. One of the most popular is the Illness Perception Questionnaire (IPQ) [9]. The original version of the IPQ comprised five components that measure cognitive representations people form when facing health threats: “illness identity” (the label the patient uses to describe the illness); “consequences” (the expected effects or outcomes of the illness); “timeline” (how long the patient believes the illness will last); “cure or control” (the extent the patient believes that they can recover from or control the illness); and “cause” (personal ideas about the cause of the illness). Subsequently, an extended version (IPQ-R) [10] was developed, which adds three more dimensions (cyclical timeline, illness coherence, and emotional representation).

Using the IPQ, studies have examined the illness perceptions among patients with various medical conditions [11]. For patients with FM, there are some descriptive studies on illness perception [12], [13], [14], [15], [16]. Their common findings were: patients with FM perceive their illness as chronic and persistent, having a substantial effect on their lives, and caused by stress or an abnormal immune system.

Illness perception among patients with FM appears correlated with outcomes such as physical status and symptoms or quality of life [13], [15], [16], and is different between cultures [17]. A few studies using the IPQ examine the relationship between illness perception and patient satisfaction [18] or medical cost [19]. Studies by Frostholm et al. surveyed patients with MUS who visited primary care providers [20], [21]. They found that illness perception correlated with patients’ satisfaction with consultation. In particular, “uncertainty” (patient not knowing what is wrong) and the “emotional representations” (the symptoms making the patient feel worried, depressed, helpless, afraid, hopeless) predicted their dissatisfaction. They concluded that patients’ negative interpretation of the illness has a stronger effect on their dissatisfaction with consultation than their general mental stress [20]. They also investigated the correlation between illness perception and medical usage cost [21]. Their results indicated that patients who attributed the cause of their illness to psycho-social factors, stress, or lifestyle indicated a higher past usage of medical resources. They also reported that the factors that correlated with higher medical usage were: number of reported symptoms, anxiety about the illness, recognition of a long disease course, impact on life, and emotional representation. Another survey in eight countries [22], although it did not measure illness perception, reported that the factors correlated with FM patients’ satisfaction were: number of recognized symptoms, pain severity, and number of treatments taken and doctors seen before diagnosis.

Negative attitudes in the social environment is another important factor. The attitudes of physicians in particular impair patients’ dignity [23] and when sufficiently serious, lead some FM patients to attempt suicide [24]. Patients experience rejection, disbelief, and a lack of understanding from other people, which is typical in invisible diseases such as FM. [25] named this experience “invalidation”. Using a standardized scale of invalidation, recent studies have shown that invalidation was negatively correlated with QOL [26] and physical status [27]. Invalidation can also lead to strong dissatisfaction with medical professionals, which could result in “doctor shopping” behavior [28] to find good doctors and effective treatment. Consequently, the physician–patient relationship is undermined and the consumption of medical resources is increased at the societal level.

From these empirical study results, we predict that illness perceptions or negative responses from medical professionals would correlate with satisfaction in consultation or with frequency of hospital visits for FM. However, no such study has yet been conducted. Therefore, the purpose of this explanatory study was to show whether illness perceptions and invalidation from medical professionals in patients with FM correlate with their satisfaction with their physicians or their number of hospital visits.

Section snippets

Participants

The participants of this study were members of the Japanese Fibromyalgia Support Association (JFSA). JSFA staff randomly selected patients over 20 years old from a list of 1300 JFSA members (Dec. 2012). The first author (M.H.) generated random numbers using spreadsheet software, and the JSFA selected patients who had a corresponding membership number.

Survey procedures

A preliminary survey targeting 100 randomly selected members of the JFSA from the aforementioned list was conducted in December 2011. This enabled

Patient demographics, clinical status, and consultation behavior (Tables 1 and 2)

Of the 304 participants, 88.5% were female and the mean age ± standard deviation (SD) was 51.2 ± 14.2 years. Of the participants, 55.7% were married. Of the 79.3% who were not employed, nearly half (45.6%) of the participants were housewives, and only 13.3% of participants received public welfare from disease or disability (e.g., disability pension).

Mean years from symptom onset ±SD was 12.5 ± 11, mean ± SD years from onset to diagnosis was 7.9 ± 10.6, and mean ± SD number of hospital visits before

Discussion

Participants in this study had fairly severe fibromyalgia. Compared with the published FIQ scores measured in those of other countries [35], [37], our participants had the highest scores. When compared with Japanese patients who consulted a FM clinic (mean ± SD; 60.3 ± 20.5) [33], our participants’ average score (mean ± SD; 65.5 ± 19.9) was greater. One reason for this may be that the response rate for this study was quite high (72.6%) when compared with a survey conducted with JSFA members (38.7%) [38]

Conflict of interest

The authors have no conflicts of interest to disclose.

Funding source

This study was supported by a Grant-in-Aid for Japan Society for the Promotion of Science Fellows (JSPS) during the fiscal years of 2010–2012.

Acknowledgements

We thank all of the participants in this study and the members of the Department of Health Communication at The University of Tokyo.

I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

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