O R I G I N A L A R T I C L E
Assessment of the relatives or spouses cohabiting
with the fibromyalgia patients: is there a link regarding
fibromyalgia symptoms, quality of life, general health
and psychologic status?
Sebnem Koldas Dogan•Yesim Kurtais Aytur•
Cem Atbasoglu
Received: 11 August 2009 / Accepted: 10 March 2010 / Published online: 26 March 2010 Ó Springer-Verlag 2010
Abstract It was aimed to investigate the existence of the symptoms related to fibromyalgia in the first-degree rela-tives or spouses of the patients and to assess the psycho-logic and general health status of these individuals and the correlation of these with the patients’ status. Thirty-seven patients with FS, 32 first-degree relatives or spouses of the patients and 30 healthy subjects as a control group were included. Symptoms related to FS were recorded in all subjects. Fibromyalgia Impact Questionnaire and Notting-ham Health Profile were used to assess the components of functional status and quality of life. General health status was evaluated by General Health Questionnaire. Beck Depression Inventory and Beck Anxiety Inventory were used to assess the psychologic status. There were signifi-cant differences in the frequency of the symptoms between three groups (P \ 0.05). Symptoms and signs related to of relatives/spouses of the patients and healthy controls were found to be significantly lower than those of the patients. GHQ, BAI and BDI scores of patients were found to be significantly higher than relative/spouses and control groups (P \ 0.05). There were statistically significant dif-ferences between three groups in energy level, pain, sleep and physical abilities subscores of NHP (P \ 0.05). No
significant differences were detected in NHP subscores between relative/spouses of the patients and controls (P [ 0.05). No fibromyalgia symptoms or signs were detected in the relatives/spouses. The general health status, psychologic status and quality of life were found to be not impaired in relatives/spouses of the patients with FS. Keywords Fibromyalgia Relatives
Psychologic status and quality of life
Introduction
Fibromyalgia is a nonarticular rheumatic syndrome char-acterized by widespread pain, tender points at specific anatomic sites, morning stiffness, muscle and joint hyper-sensitivity, fatigue, emotional distress and sleep distur-bances [1]. Other common symptoms of fibromyalgia are headache, irritable bowel, female urethral syndrome, Raynaud phenomenon [2]. It affects mostly women and more prevalent after the age of 40 [3,4]. The prevalence of fibromyalgia syndrome (FS) was reported to be 2–8% [5]. The etiology of FS is still unclear, but psychologic, neu-roendocrine, immunologic and genetic factors or life stress have been accused [6–10].
The lifetime prevalence of major depression, anxiety and somatization disturbances of patients with FS was reported to be higher than that of the general population [11,12]. Since FS is a chronic pain syndrome, living with chronic illness may alter the patient’s life. It may result in some changes in family, household environment, social and business life [13]. Impaired physical and psychologic status and quality of life of the patients with FS may adversely affect other members of the family [14]. Patients with FS need more support from the family members, S. K. Dogan (&)
Department of Physical Medicine and Rehabilitation, Dr. Rıdvan Ege Hospital, School of Medicine, Ufuk University, 06520 Ankara, Turkey e-mail: sebnemkoldas@yahoo.com Y. K. Aytur
Department of Physical Medicine and Rehabilitation, School of Medicine, Ankara University, Ankara, Turkey C. Atbasoglu
Department of Psychiatry, School of Medicine, Ankara University, Ankara, Turkey
especially in household activities and hence new roles and increased responsibility may pose a psychological and functional burden on patients’ relatives. The quality of life, physical functioning, physical and mental health of the relatives and spouses of the patients with FS have been also reported to be impaired [13–18].
In the previous studies, high prevalence of FS was detected in the relatives and spouses of the patients with FS [7,19,20]. This high frequency may be attributed partially to genetic factors for the patients’ relatives. In some studies, the number of tender points in the relatives of the patients was found to be higher than those of the normal controls, as well [18,19].
In this study, it was aimed to determine the existence of the symptoms related to fibromyalgia in the relatives/ spouses cohabiting with the fibromyalgia patients. Sec-ondary aim was to assess the psychologic and general health status of the relatives/spouses of the patients and the correlation of these with the patients’ health status.
Materials and methods
Thirty-seven patients with FS registered at the FS out-patient clinic of the Physical Medicine and Rehabilitation Department in Ankara University, Faculty of Medicine and 32 first-degree relatives or spouses of the patients (22 husbands, 2 mothers and 8 children) cohabiting with the patients were included in the study. Thirty healthy volun-teers were selected as control group from hospital employees who have no known psychologic or systemic disorders and use no medication. All of the subjects were evaluated for the exclusion of any other rheumatic or systemic diseases by physical examination, complete blood count, routine blood chemistry and urine tests, erythrocyte sedimentation rate, C-reactive protein and X-rays when needed. The exclusion criteria were the presence of psy-chiatric disorders, systemic and metabolic diseases, being under the age of 18 and being illiterate.
Fibromyalgia syndrome was diagnosed according to the American College of Rheumatology 1990 classification criteria [21] and mainly based on the clinicians’ decision. Age and gender matched with the relatives/spouses, thirty healthy subjects were recruited as the control group. The sociodemographic characteristics of the subjects (age, sex, disease duration) were recorded. The existence of the symptoms related with FS in patients, relatives/spouses and controls were questioned. Pain severity was assessed by visual analog scale (VAS, 0–100 mm). Sleep distur-bance, tender point count (TPC), total myalgic score (TMS) were recorded in all subjects. A moderate and consistent degree of pressure was used in digital palpa-tion of the 18 anatomic tender points, which were
recommended by the ACR 1990 criteria, and 4 symmet-rical control points. The amount of force applied was approximately 4.0 kg as recommended.
Fibromyalgia Impact Questionnaire (FIQ) [22] was used to measure the components of health status that are believed to be most affected by FS in patients and relatives/spouses of the patients. FIQ is a self-administered instrument and composed of 10 items. The first item related to patient’s ability to perform daily tasks (cooking, cleaning, walking, driving etc.). Items 2 and 3 assess the number of days they felt well in the past week and the number of days they were unable to work. The next seven items focuses on the ability of patients to work, pain, fatigue, tiredness, stiffness, anx-iety and depression. The Turkish version of the instrument was shown to be valid and reliable [23].
The quality of life of the all subjects was assessed by Nottingham Health Profile (NHP) [24]. In NHP, there are six categories in 38 questions consisting of energy, pain, physical mobility, sleep, emotional reactions and social isolation. The adaptation study of the Turkish version was also done, and the questionnaire was reported to be valid and reliable [25].
General health status was evaluated by General Health Questionnaire (GHQ). This questionnaire is a measure of current mental health [26]. The validity and reliability study of the Turkish GHQ was carried out by Kilic et al. [27].
Beck Depression Inventory (BDI) and Beck Anxiety Inventory (BAI) were used to assess the psychologic status of the patients, relatives/spouses and control subjects. BDI and BAI are 21-item measures screening current symptoms of depression and anxiety [28, 29]. The validity and reli-ability of Turkish versions of these instruments were reported by Hisli et al. and Ulusoy et al. [30,31].
All the data were analyzed using SPSS-16.0 statistical package for Windows. The mean values and frequencies of the parameters were assessed by descriptive statistics. Kruskal–Wallis variance analysis was used for comparing groups, and P \ 0.05 was accepted to be statistically sig-nificance level.
Results
Thirty-seven (35 females and 2 males) patients, 32 (7 females and 25 males) relatives/spouses (22 husbands, 2 mothers and 8 children) and 30 healthy control subjects were included in the study. The demographic characteris-tics of the subjects were given in Table1.
The symptoms related to FS found in the patients, their relatives/spouses and controls were presented in Table2. There were significant differences in the frequency of the present symptoms between patients with FS and the
relatives/spouses and control groups (P \ 0.05). The most common symptom detected in the relative/spouse group was fatigue (50%) where it was interestingly 70% in the control group. Yet no significant differences were detected regarding the symptoms between the relatives/spouses group and the control group (P [ 0.05).
Pain severity, tender point counts and total myalgic scores of all groups were shown in Table3 and IV. Pain severity, tender point counts and total myalgic scores of relatives/spouses of the patients and healthy controls were found to be significantly lower than those of the patients with FS. There were no significant differences between the relatives/spouses and the control groups (P = 0.558, 0.187, 0.218, respectively).
The FIQ scores of the patients were presented in Table3. The FIQ scores of the patients with FS were higher than relatives/spouses of the patients, and statisti-cally significant difference was found between the patients and the relatives/spouses groups (P = 0.000).
Table4 shows comparison of the GSA, BAI, BDI and NHP scores of three groups. GHQ, BAI and BDI scores of patients were found to be higher than those of the relatives/ spouses and the controls. All subscores of NHP in patients with FS were higher than those of the relatives/spouses and the controls; there were statistically significant differences between three groups in energy level, pain, sleep and physical abilities subscores of NHP (P \ 0.05). No sig-nificant differences were detected in NHP subscores
between the relatives/spouses and the controls (P [ 0.05). BDI scores of the controls were higher than those of the relatives/spouses, and difference was statistically Table 1 The demographic
characteristics of the patients with FS, relatives/spouses of the patients and healthy controls
SD standard deviation
Patients Relatives/spouses Controls
Age, year (mean ± SD) 44 ± 6 41 ± 13 39 ± 6
Sex, n (%)
Female 35 (95%) 7 (22%)
Male 2 (5%) 25 (78%) 30 (100%)
Symptom duration, month (mean ± SD) 90 ± 74 – –
Table 2 Symptoms related with FS in the patient, the relatives/spouses and the control groups
* Statistical difference
Symptoms Patients (n, %) Relatives (n, %) Controls (n, %) P
Widespread pain 32 (86.5)* 5 (15.6) 6 (20) 0.000 Fatigue 35 (94.6)* 16 (50) 21 (70) 0.000 Sleep disturbance 25 (67.6)* 11 (34.4) 13 (43.3) 0.016 Morning stiffness 24 (64.9)* 3 (9.4) 2 (6.7) 0.000 Paresthesia 30 (81.1)* 10 (31.3) 5 (16.7) 0.000 Raynaud’s phenomenon 14 (37.8)* 0 (0) 0 (0) 0.000 Xerophthalmia 17 (45.9)* 5 (15.6) 1 (3.3) 0.000 Xerostomia 28 (75.7)* 12 (37.5) 9 (30) 0.000
Irritable bowel syndrome 26 (70.3)* 5 (15.6) 5 (16.7) 0.000
Headache 31 (83.8)* 14 (43.8) 17 (56.7) 0.002
Loss of libido 25 (67.6)* 3 (9.4) 3 (10.0) 0.000
Urogenital symptoms 17 (45.9)* 4 (12.5) 0 (0) 0.000 Subjective swelling 32 (86.5)* 7 (21.9) 2 (6.7) 0.000
Table 3 The clinic characteristics of the patients with FS and relative/spouse
Parameter Patients Relatives P
VAS (mm) 59 ± 22 10 ± 19 0.000 TPC 18 ± 5.9 2.1 ± 3.6 0.000 TMS 23 ± 8.1 2.5 ± 4.9 0.000 FIQ 47 ± 17 23.4 ± 14.5 0.000 GHQ 14 ± 6.6 9.8 ± 7.3 0.004 BAI 24 ± 11 9.5 ± 10 0.000 BDI 15 ± 9.2 7.3 ± 7.3 0.001 NHPEL 78.3 ± 27.4 26.0 ± 35.6 0.000 NHPP 70.9 ± 29.3 22.2 ± 31.0 0.000 NHPER 43.2 ± 22.4 29.1 ± 30.8 0.127 NHPS 37.8 ± 30.8 18.1 ± 27.0 0.003 NHPSI 27.5 ± 26.3 17.5 ± 27.7 0.079 NHPPA 43.5 ± 22.3 14.4 ± 22.47 0.000 VAS visual analog scale, TPC tender point counts, TMS total myalgic score, FIQ fibromyalgia impact questionnaire, GHQ general health questionnaire, BAI Beck anxiety inventory, BDI Beck depression inventory, NHPEL Nottingham health profile-energy level, NHPP Nottingham health pain, NHPER Nottingham health profile-emotional reactions, NHPS Nottingham health profile-sleep, NHPSI Nottingham health profile-social isolation, NHPPA Nottingham health profile-physical mobility
significant (P = 0.026), but the scores were lower than the cut-off values accepted for depression in both groups [32,33].
There were no significant differences between relatives/ spouses and the control group in GHQ and BAI scores (P [ 0.05).
Discussion
Fibromyalgia has been the focus of many studies searching its etiology. In several studies, genetic factors were sug-gested to be responsible [6,7,18,19,34]. Pellegrino et al. [7] reported the familial occurrence of fibromyalgia and concluded that it has an autosomal dominant inheritance. Also, Yunus et al. [6] showed a genetic linkage of FS. The symptoms and signs of the syndrome have been reported to be observed in the relatives of the patients with FS. Buskila et al. [7,19] found a higher prevalence of FS in the rela-tives than the controls. Also, mean TPC of the relarela-tives was higher than those of the controls [19]. Contrary to this finding, Arnold et al. [18] diagnosed FS in only 6.4% of the relatives of the patients with FS. On the other hand, Pellegrino et al. [7] reported very high prevalence (52%) of symptoms and signs of FS among 50 parents and siblings of patients with FS.
In the present study, it is aimed to investigate the existence of the symptoms related to fibromyalgia in the relatives/spouses of the patients cohabiting with them,
looking from a different perspective other than the genetic linkage. The hypothesis was sharing a life with a person who has a chronic pain condition might bring a chronic stress to their life resulting in displaying similar symp-toms. Yet the most common symptoms observed in the relatives/spouses group were fatigue (50%), headache (43.8%), xerostomia (37.5%), sleep disturbance (34.4%) and paresthesia (31.3%), but there were no significant differences regarding to symptoms between the relatives/ spouses and the control group. Pain severity, tender point counts and total myalgic scores of relatives/spouses of the patients and healthy controls were found to be signifi-cantly lower than those of the patients with FS, and no significant differences were found between the relatives/ spouses and the controls. The results of this study are not consistent with those of the other studies at least regarding the results of the relatives part. This may be related to the fact that not only the genetic factors but also the envi-ronmental factors are important in the emergence of FS symptoms. Besides, in the present study, relatives/spouses group was mostly consisted of husbands; that is to say, it is not true to evaluate the effect of genetic linkage since blood relatives were in the minority.
Fibromyalgia is a chronic pain syndrome and expected to have an impact not only on the patients’ health status but also on those of the spouses and relatives cohabiting with the patients as well [16]. High uses of health services among relatives of chronically ill persons than controls were reported [35]. Bigatti et al. [16] reported poorer health status among husbands of patients with FS than those of husbands of healthy women, but no differences were found between the groups in using health care system and costs. Neumann et al. [14] also demonstrated a lower level of health status in the relatives of patients with FS, especially in female relatives when compared to the healthy controls. In the present study, the FIQ and GHQ scores of the patients with FS were found to be higher than those of the relatives/spouses. Furthermore, no significant difference was observed in GHQ scores between the relatives/spouses and the controls. These results show that, in this group of study population, FS patients’ health status doesn’t have a negative impact on the relatives/spouses regarding the general health status and physical functioning.
Chronic diseases affect the patients’ social, business and family life. Fibromyalgia syndrome alters the relationships between patients and other family members. The patients with FS feel anxiety, depression, powerlessness and fatigue leading low level of life satisfaction [11,16]. The partners’ chronic and painful illness may cause emotional distress and loss of communication in their family life. Also, patients with FS need more help in household activities. This situa-tion changes the roles in the family and increases the workload and responsibility of other family members Table 4 The Clinical assessment of the patients, relative/spouse and
control groups
Parameter Patients Relatives/spouses Controls P VAS (mm) 59 ± 22* 10 ± 19 16 ± 24 0.000 TPC 18 ± 5.9* 2.1 ± 3.6 0.8 ± 1,7 0.000 TMS 23 ± 8.1* 2.5 ± 4.9 0.9 ± 1.8 0.000 GHQ 14 ± 6.6* 9.8 ± 7.3 11 ± 5.6 0.004 BAI 24 ± 11* 9.5 ± 10 11 ± 10 0.000 BDI 15 ± 9.2* 7.3 ± 7.3 10 ± 7.9 0.001 NHPEL 78.3 ± 27.4* 26.0 ± 35.6 46.6 ± 41.6 0.000 NHPP 70.9 ± 29.3* 22.2 ± 31.0 27.9 ± 33.7 0.000 NHPER 43.2 ± 22.4* 29.1 ± 30.8 35.5 ± 28.7 0.075 NHPS 37.8 ± 30.8* 18.1 ± 27.0 38.0 ± 31.6* 0.003 NHPSI 27.5 ± 26.3* 17.5 ± 27.7 20.0 ± 28.2 0.077 NHPPA 43.5 ± 22.3* 14.4 ± 22.47 18.3 ± 18.1 0.000 VAS visual analog scale, TPC tender point counts, TMS total myalgic score, GHQ general health questionnaire, BAI Beck anxiety inven-tory, BDE Beck depression inveninven-tory, NHPEL Nottingham health profile-energy level, NHPP Nottingham health profile-pain, NHPER Nottingham health profile-emotional reactions, NHPS Nottingham health profile-sleep, NHPSI Nottingham health profile-social isola-tion, NHPPA Nottingham health profile-physical mobility
[13,15]. This condition may adversely affect the quality of life and psychologic status of the patients and partners or relatives of the patients with FS. In a study of Bigatti et al. [16], poorer psychologic well-being was reported in spouses of patients with FS compared to spouses of healthy indi-viduals. The high prevalence of mood disorders in relatives of the patients with FS was reported in some studies [12,17,
18]. Neumann et al. [14] reported impaired quality of life and physical functioning of relatives of patients with FS. They explained these results with the high prevalence of distress in family and undiagnosed FS among the relatives/spouses of the patients with FS. In this study, the quality of life and psychologic status of the relatives/spouses were found to be normal, whereas both were impaired in the patients. In the present study, nearly all of the patients were female where there was a male predominance in the relatives/spouses group. In general, in Turkish culture, female patients keep doing their household activities like housework and baby-sitting despite their chronic illnesses like FS, without demanding any help. Moreover, males mostly earn for the living and leave the housework and taking care of children to their female partners. Besides, husbands may not give attention to their said-to-be chronically ill partners since FS doesn’t exhibit apparent physical findings. So the partners do not face any major changes in their lifestyle. Overall, this situation may not bring a burden to the relatives/spouses of the patients, and there may be no impairment in their general health and psychologic status.
There several limitations of this study. First of all, sample size is small. There would have been better results if the number of female relatives/spouses had been more considering the cultural differences and attitudes afore-mentioned regarding sex. Same consideration is valid for the patient population since there are only two male patients with FS included in the study. In fact, of the 310 patients registered to the FS out-patient clinic of our department only 2% are male. Sample size restricted us in making further analyses if there was a meaningful dif-ference between the findings of spouses and blood relatives.
As a conclusion, the results of this study displayed that the general health status, psychologic status and quality of life were found not to be impaired in the relatives/spouses of the patients with FS, which is chronic disorder, and no fibromyalgia symptoms or signs were detected in the rel-atives/spouses group.
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