The objective of this study was to assess spiritual needs of patients with fibromyalgia syndrome (FMS) and to evaluate correlations with disease and health associated variables. Using a set of standardized questionnaires (i.e., Spiritual Needs Questionnaire, Fibromyalgia Impact Questionnaire, SF-36's Quality of Life, Brief Multidimensional Life Satisfaction Scale, etc.), we enrolled 141 patients (95% women, mean age 58 ± 10 years). Here, needs for
The fibromyalgia syndrome (FMS) is a prevalent syndrome characterized by a variety of symptoms such as chronic pain, disturbed sleep, stiffness, fatigue, and psychological distress [
FMS may also affect the family setting and relationships with friends. Marcus et al. [
In a recent qualitative study [
To sum up, FMS patients are challenged to cope, on a wide range, with symptoms and disease consequences affecting many domains of their lives. In fact, patients with chronic pain use a number of cognitive and behavioural strategies to cope with their pain, including spiritual/religious forms of coping, such as prayer, and seeking spiritual support to manage their pain [
SpR was identified as a relevant resource to cope even among more secular German patients with chronic pain diseases. Interestingly, SpR was associated with positive disease interpretations such as challenge and value, but not with negative interpretations of disease, while life satisfaction or depressive escape from illness was not significantly associated with measures of SpR [
Meanwhile, studies have clearly shown that several patients with chronic diseases have unmet spiritual needs [
While one may expect that spiritual needs are stated as a result of an experienced lack or loss, it is of interest that particularly existential needs and needs for inner peace were inversely related to spiritual well-being (which indicates a lack or loss), while in contrast religious needs were positively associated (which would indicate that a religious attitude might be a prerequisite to express such needs) [
The objective of our study was to assess which spiritual needs were prevalent in a specific and circumscribed sample of German patients with FMS and to evaluate associations between these needs and disease associated variables, mental health associated variables (i.e., anxiety, depression, loneliness, etc.), and measures of life satisfaction and health related quality of life.
A questionnaire battery consisting of the measurement instruments described below was sent to 300 patients, who had been treated in a multidisciplinary rehabilitation program at the department of Physical Medicine and Rehabilitation between 2004 and 2008. This department is a tertiary care center located at the University Hospital in Munich. All patients fulfilled the American College of Rheumatology (ACR) criteria for FMS [
The following sociodemographic variables were collected: marital status, age, level of education, religious orientation. Patients’ religious/spiritual self-categorization was measured with two items derived from the SpREUK questionnaire (SpREUK is an acronym of the German translation of “Spiritual and Religious Attitudes in Dealing with Illness”), that is, f1.1. (“To my mind I am a spiritual individual”) and f2.1. (“To my mind I am a religious individual”) [
Data on duration and intensity of symptoms indicative of FMS was collected too. Pain was assessed with a visual analog scale (VAS) of current pain severity, the frequency of severe pain during the last three months, a VAS of pain severity during the last three months, and a Tender Point Score (TPS). The TPS consists of a body image illustrating 24 regions on the back and front, which are commonly indicated as painful by FMS patients. Patients indicate pain intensity by themselves in 24 regions ranging from 0 (no pain) to 5 (extreme pain); the maximum score is 120. Due to missing items (four missing items were acceptable), the TPS was not calculated in 22 patients.
The questionnaire set included the following measures.
To measure patients’ spiritual needs, we used the Spiritual Needs Questionnaire (SpNQ) [ Need for Need for
Patients rate whether they currently have the respective needs (yes/no) and how strong they were to them. The self-ascribed importance was measured on a 4-point scale from disagreement to agreement (0—not at all; 1—somewhat; 2—very; 3—extremely). For all analyses, we used the mean scores of the respective scales described above; the higher the scores, the stronger the respective needs are.
Because some patients did not respond to all items of the respective scales, the mean scores were calculated only when 2/3 or 3/5 of items were present. Thus, the SpNQ scales were not calculated in 6 and 8 persons, respectively.
The SpREUK-15 questionnaire measures SpR attitudes and convictions of patients dealing with chronic diseases [
The SpREUK-15 scores items on a 5-point scale from disagreement to agreement (0—does not apply at all; 1—does not truly apply; 2—do not know (neither yes nor no); 3—applies quite a bit; 4—applies very much). The scores were referred to a 100% level (transformed scale score). Scores >50% indicate higher agreement (positive attitude), while scores <50% indicate disagreement (negative attitude).
The mean scores were calculated only when 3/5 of items were present; thus these scores were not calculated in 4 to 5 persons.
The Hospital Anxiety and Depression Scale (HADS) is a brief self-report questionnaire measuring anxiety (7 items) and depression (7 items) [
The FIQ is an assessment and evaluation instrument developed to measure fibromyalgia patients’ status, progress, and outcomes. It has been designed to measure the components of health status that are believed to be most affected by fibromyalgia [
The QOLS is a 16-item questionnaire adapted by Burckhardt et al. [
The SF-36 is a 36-item instrument for measuring health status and outcomes from the patient’s point of view and has been translated and validated into numerous languages including German [
A depressive intention to run away from the current situation might be an indicator of a patient’s struggle with disease and associated with psychosocial and spiritual needs. The three-item scale “Escape” is an indicator of such an escape-avoidance strategy addressing an attitude of fearful insecurity, a tendency to run away from illness, and the wish that all this could have been nothing more than a bad dream (i.e., “fear of what illness will bring,” “would like to run away from illness,” “when I wake up, I don’t know how to face the day”) [
The items were scored on a 5-point scale from disagreement to agreement. For all analyses, we used the mean scores of the “Escape” scale based on a scale of 100%. Scores >50% indicate the presence of this attitude, and scores <50% represent a lack of this attitude. The mean scores were calculated only when 2/3 of items were present factor; here the “Escape” scores were not calculated in 24 persons.
Life satisfaction was measured using the Brief Multidimensional Life Satisfaction Scale (BMLSS) [
Each of these 10 items was introduced by the phrase “I would describe my level of satisfaction as …”, and was scored on a 7-point scale ranging from dissatisfaction to satisfaction (0—terrible; 1—unhappy; 2—mostly dissatisfied; 3—mixed (about equally satisfied and dissatisfied); 4—mostly satisfied; 5—pleased; 6—delighted). The BMLSS-10 mean score was based on a scale of 100% (“delighted”). Scores >50% indicate higher life satisfaction, while scores <50% indicate dissatisfaction.
The mean scores were only calculated when 7/10 of items were present. The BMLSS-10 scores were not calculated in 5 persons.
The UCLA loneliness scale is a 20-item questionnaire measuring general feelings of social isolation, loneliness, and dissatisfaction with one’s social interactions [
We further administered the catastrophizing subscale of the Coping Strategy Questionnaire (CSQ-catastrophizing) [
SPSS 21.0 was used for the statistical analyses. Missing data was not replaced. Thus, some scales were not calculated for all patients. In a first step of analysis, descriptive analyses (mean, median, and standard deviation) were computed for scales and subscales. Associations between scales were analyzed on the basis of first order correlations (Pearson’s
141 out of 300 patients sent the questionnaires back to the department (response rate = 47%). Sociodemographic variables and other variables are depicted in Table
Sociodemographic and other characteristics of 141 FMS patients.
Variables | |
---|---|
Gender (%) | |
Female | 95 |
Male | 5 |
Age in years (mean |
|
Disease duration (mean |
|
Living status (%) | |
Living with a partner (married or not) | 72.5 |
Living alone (single, divorced, widowed) | 27.5 |
Educational level (%) | |
Low (primary school)/none | 42.1 |
Medium (secondary school equivalent) | 36.1 |
High (high school) | 12.0 |
Other | 9.8 |
Religious orientation (%) | |
Christian | 73.3 |
Other | 6.0 |
None | 20.7 |
Spiritual/religious self-categorization (%) | |
R+S+ religious and spiritual | 18.2 |
R+S− religious but not spiritual | 22.7 |
R−S+ not religious but spiritual | 19.7 |
R−S− neither religious nor spiritual | 39.4 |
Prevalence of needs, mean/median, and standard deviation of subscales as well as frequency of selected items of the SpNQ.
Prevalence of need (%) | Mean/median of subscales [range 0–3] | SD of sub | ||
---|---|---|---|---|
No | Yes | |||
Subscales and items | ||||
| ||||
Religious needs |
|
|
||
N18 pray with someone | 82 | 18 | ||
N19 someone prays for you | 75 | 25 | ||
N20 pray for yourself | 42 | 58 | ||
N21 participate at a religious ceremony | 63 | 37 | ||
N22 read religious/spiritual books | 63 | 31 | ||
N23 turn to a higher presence | 49 | 51 | ||
Need for inner peace |
|
|
||
N2 talk about fears and worries | 27 | 73 | ||
N5 dissolve open aspects of your life** | 38 | 62 | ||
N6 immerse in the beauty of nature | 12 | 88 | ||
N7 dwell at quiet and peaceful places | 13 | 87 | ||
N8 find inner peace | 21 | 79 | ||
N13 have a loving attitude toward others | 21 | 79 | ||
Existentialistic needs (Reflection/Meaning) |
|
|
||
N4 reflect your previous life | 40 | 60 | ||
N10 find meaning in illness and/or suffering | 60 | 40 | ||
N11 talk with someone about the question of meaning in life | 58 | 42 | ||
N12 talk with someone about the possibility of life after death | 68 | 32 | ||
N16 forgive someone from past life | 53 | 47 | ||
Actively Giving |
|
|
||
N15 solace someone | 21 | 79 | ||
N26 pass own life experiences to others | 31 | 69 | ||
N27 know that your life was meaningful and of value | 27 | 73 | ||
| ||||
Additional items | ||||
| ||||
Need for participating* |
|
|
||
N28 being more involved in family business | 51 | 49 | ||
N29 being invited by friends | 45 | 55 | ||
N25 being more connected with own family | 18 | 82 | ||
Need for attention/support* |
|
|
||
N1 receiving greater care from others | 48 | 52 | ||
N30 receiving more support from own family | 45 | 55 | ||
Need for forgiveness* |
|
|
||
N17 be forgiven | 62 | 38 | ||
N16 forgive someone from past life | 53 | 47 | ||
N3 being taken care of someone from your community | 92 | 8 | ||
N24 being whole and restored | 21 | 79 | ||
N13 turn to someone in a loving attitude | 42 | 58 | ||
N14 give away something from yourself | 23 | 77 |
Prevalence of specific needs follows the self-ascribed yes/no statement (% of the respondents).
*Some items were semantically combined to nonvalidated scales.
**Item was originally part of the scale and was used here again.
As shown in Table
Spiritual needs and spiritual/religious self-categorization.
Religious needs | Existential needs | Inner peace needs | Giving/generativity needs | ||
---|---|---|---|---|---|
All individuals | mean | 0.72 | 0.88 | 1.87 | 1.57 |
SD | 0.75 | 0.74 | 0.75 | 0.93 | |
| |||||
R+S+ | mean | 1.23 | 1.20 | 1.84 | 1.46 |
SD | 0.79 | 0.93 | 0.82 | 0.93 | |
R+S− | mean | 1.07 | 0.77 | 1.62 | 1.62 |
SD | 0.79 | 0.65 | 0.74 | 0.95 | |
R−S+ | mean | 0.78 | 1.22 | 2.14 | 1.85 |
SD | 0.72 | 0.76 | 0.62 | 0.82 | |
R−S− | mean | 0.25 | 0.63 | 1.90 | 1.43 |
SD | 0.36 | 0.55 | 0.75 | 0.96 | |
| |||||
|
17.2 | 6.0 | 2.3 | 1.3 | |
|
<0.0001 | 0.001 | 0.085 | n.s. |
Data refer to 127 to 130 responding patients.
These scales did not significantly differ with respect to family status (data not shown); the educational level had a significant influence only in trend on the
Correlation analyses revealed that the spiritual needs were intercorrelated (Table
Correlation of needs with measures and subscales.
Religious needs | Existential needs | Inner peace needs | Giving/generativity needs | |
---|---|---|---|---|
Spiritual Needs | ||||
Religious | 1 |
|
|
|
Existential | 1 |
|
| |
Inner Peace | 1 |
| ||
Giving/generativity | 1 | |||
SpREUK Subscales | ||||
(spiritual) Search |
|
|
0.217 | 0.165 |
(religious) Trust |
|
|
0.113 |
|
Reflection (positive interpretation of illness) | 0.113 |
|
|
|
Fibromyalgia Impact (FIQ) | 0.138 | 0.228 |
|
0.234 |
Tender point count | 0.129 | 0.071 | 0.115 | 0.152 |
Anxiety (HADS) | 0.055 |
|
|
0.217 |
Depression (HADS) | −0.076 |
|
|
−0.030 |
Escape from illness | 0.029 |
|
|
0.194 |
Loneliness (UCLA) | 0.135 | −0.181 |
|
0.009 |
Catastrophizing (CSQ) | −0.003 |
|
|
0.219 |
Quality of life | ||||
Life satisfaction (BMLSS-10) | 0.086 | −0.138 |
|
−0.037 |
Quality of life scale (QOLS) | −0.007 | −0.207 |
|
0.005 |
SF-36 Physical score | −0.160 | 0.046 | 0.065 | −0.155 |
SF-36 Mental sum score | 0.000 |
|
|
−0.103 |
SF-36 Physical functioning index | −0.125 | −0.025 | −0.013 | −0.138 |
SF-36 Role-physical index | −0.108 | 0.040 | −0.151 | −0.129 |
SF-36 Bodily pain | −0.112 | −0.056 | −0.150 |
|
SF-36 General health perceptions index | −0.102 |
|
|
−0.120 |
SF-36 Vitality | −0.078 | −0.122 |
|
−0.080 |
SF-36 Social functioning | −0.024 | −0.192 |
|
−0.083 |
SF-36 Emotional role | 0.042 |
|
|
−0.130 |
SF-36 Mental health | −0.081 |
|
|
|
Stepwise multiple regression analyses were used for identifying the most significant predictors (Table
As shown in Table
Regression analyses with spiritual needs as dependent variables (stepwise method).
Beta |
|
|
Collinearity statistics* | ||
---|---|---|---|---|---|
Tolerance | VIF | ||||
Dependent variable: religious needs ( |
|||||
Model 4 | |||||
(constant) | −3.086 | 0.003 | |||
Trust (SpREUK) | 0.442 | 4.643 | 0.000 | 0.693 | 1.443 |
Search (SpREUK) | 0.282 | 3.004 | 0.003 | 0.711 | 1.407 |
Fibromyalgia impairment (FIQ) | 0.372 | 3.560 | 0.001 | 0.576 | 1.736 |
Life satisfaction (BMLSS-10) | 0.269 | 2.601 | 0.011 | 0.589 | 1.696 |
| |||||
Dependent variable: existential needs: reflection/meaning ( |
|||||
Model 3 | |||||
(constant) | −1.066 | 0.289 | |||
Search (SpREUK) | 0.339 | 3.514 | 0.001 | 0.686 | 1.458 |
Anxiety (HADS) | 0.415 | 5.013 | 0.000 | 0.932 | 1.073 |
Trust (SpREUK) | 0.251 | 2.568 | 0.012 | 0.670 | 1.493 |
| |||||
Dependent variable: peace needs ( |
|||||
Model 2 | |||||
(constant) | 5.500 | 0.000 | |||
Anxiety (HADS) | 0.446 | 4.940 | 0.000 | 0.965 | 1.036 |
Reflection (SpREUK) | 0.234 | 2.592 | 0.011 | 0.965 | 1.036 |
| |||||
Dependent variable: Giving/Generativity ( |
|||||
Model 5 | |||||
(constant) | 3.257 | 0.002 | |||
Reflection (SpREUK) | 0.285 | 2.941 | 0.004 | 0.914 | 1.094 |
Catastrophizing (CSQ |
0.319 | 2.349 | 0.021 | 0.467 | 2.143 |
HADS Depression (HADS) | −0.682 | −3.915 | 0.000 | 0.283 | 3.533 |
Life satisfaction (BMLSS-10) | −0.310 | −2.310 | 0.023 | 0.477 | 2.095 |
HADS anxiety (HADS |
0.290 | 2.002 | 0.048 | 0.411 | 2.436 |
Semantically similar items, which are not specifically related to SpR but might potentially be of importance for the interpretation of data were collapsed into the following sum scores (Table
Correlation of needs with measures and additional subscales.
Scales and subscales | Need for participating | Need for attention/support | Need for forgiveness |
---|---|---|---|
Pain and mental health | |||
Fibromyalgia impact (FIQ) |
|
|
0.154 |
Tender point count |
|
0.223 | 0.043 |
HADS anxiety |
|
|
|
HADS depression | 0.159 |
|
0.126 |
Escape from illness | 0.201 |
|
0.112 |
UCLA loneliness scale | −0.007 |
|
−0.100 |
CSQ-catastrophizing |
|
|
0.159 |
Quality of life | |||
Life satisfaction (BMLSS-10) | −0.065 |
|
−0.075 |
Quality of life scale (QOLS) | −0.145 |
|
−0.139 |
SF-36 Physical sum score | −0.153 | 0.001 | 0.084 |
SF-36 Mental sum score |
|
|
−0.223 |
SF-36 Physical functioning | −0.152 | −0.102 | 0.032 |
SF-36 Role physical | −0.177 | −0.225 | 0.048 |
SF-36 Bodily pain |
|
|
−0.050 |
SF-36 General health perception |
|
−0.218 | −0.235 |
SF-36 Vitality |
|
|
−0.034 |
SF-36 Social functioning | −0.144 |
|
−0.163 |
SF-36 Emotional role | −0.203 |
|
−0.212 |
SF-36 Mental health |
|
|
−0.168 |
Significant correlations with
**
TPC: tender point count. VAS: visual analogue scale; QOLS: quality of life scale; FIQ: fibromyalgia impact questionnaire.
This study specifically enrolling patients with fibromyalgia confirms previous findings among patients with various chronic pain diseases [
Moreover, in this study,
Interestingly, particularly the strongly interconnected factors
Also in this study, anxiety was the best predictor of
The dependent variable
Forgiveness can be both a secular existential istic and a religious issue, depending on the individual context. As a result of such processes of forgiveness, inner peace states may occur. Nearly half of the patients in our sample had the need to forgive someone from their past life, and 38% to be forgiven. Having these needs was weakly associated with anxiety and negatively with SF-36’s mental health component. Although open conflicts in life which may require forgiveness can be associated with mental health affections, we cannot draw any causal conclusions. Longitudinal studies addressing this issue are required.
Nevertheless, these findings fit to the model proposed by Toussaint et al. [
Moreover, these results show that FMS patients—like other patients with chronic diseases, too—may have prevalent needs to forgive and be forgiven, and this is consistent with the only other known study of forgiveness needs in chronic illness. In his study, Barry [
More than half of the patients indicated a need for more participation in social activities and support by family and others. Particularly the needs for attention and support were moderately associated with a variety of disease as well as psychosocial variables, including anxiety and depression, loneliness, and daily life affections through the pain. According to Eisenberger and Lieberman [
In qualitative studies, FMS patients repeatedly report that being stigmatized was an outstanding theme [
Some limitations of our study need to be addressed. The FMS patients were recruited in a tertiary referral center and all of them participated in the past in a multidisciplinary treatment program which also included elements of psychosocial education and emotion control. The response rate in our study was 46%; we are not able to compare the responders to the nonresponders. Of course one cannot exclude the possibility that particularly those who have no interest in spiritual/religious issues may have not responded to the questionnaires, and thus our results might be too positive for religious patients. However, 59% of the patients would not regard themselves as religious—and this amount is consistent with previous findings among patients with chronic pain diseases [
Clearly there are high proportions of FMS patients who have specific spiritual needs. But where are those met? The current health care system is based on the biomedical model which has changed the focus of medicine from a caring, service-oriented model to a technological, cure-oriented model [
There are several studies showing that emotional, social, and spiritual issues in the doctor-patient encounter are often not addressed and/or discussed [
However, there is also growing interest in medicine to include spiritual or compassionate care in order to serve the whole person—the physical, emotional, social, and spiritual. Family physicians view spirituality as a significant dimension of human experience that embraces sustaining and enlivening relationships with spirit and the pursuit and expression of meaning and purpose [
Evidently, a high proportion of FMS patients indicated specific spiritual needs in different domains which were associated particularly with anxiety and specific psychosocial restrictions. Therefore, these needs should be addressed in clinical care in order to identify potential therapeutic avenues to support patients’ coping with illness.
Dr. Winkelmann was investigator in a study of pregabalin in FMS, sponsored by Pfizer.
Niko Kohl’s work is made possible through the generous longstanding support of the Samueli Institute, USA.