Abstract
Context.
Religion and spirituality (r/s) are important resources in coping with cancer. However, there are aspects of r/s, such as religious and spiritual struggles, found to be associated with poorer outcomes. A new measure has been adapted from the Religious and Spiritual Struggles Scale (RSS) to assess r/s struggles: the RSS-14. This concise measure allows for the assessment of multiple types of r/s struggles for people from different religious backgrounds or none.
Objectives.
The aim of the present study was to examine the prevalence, predictors and correlates of r/s struggles as measured by the RSS-14 and its subdomains in a cancer population receiving palliative care.
Methods.
Data were collected from six outpatient palliative care services across the US. Inclusion criteria for patients were age 55 or older with a cancer diagnosis. In addition to demographic and r/s characteristics, study measures included the Edmonton Symptom Assessment Scale (ESAS), the Patient Dignity Inventory (PDI) and the Quality of Life at the End of Life (QUAL-E).
Results.
The study included 331 participants. Some r/s struggle was reported by 66%, moderate to high struggle for at least one item was reported by 20% of the patients. In bivariate analyses, r/s struggle was associated with greater symptom burden, greater dignity-related problems and poorer quality of life; in multivariable analyses, dignity-related problems remained a predictor of total r/s struggle.
Conclusion.
R/S struggles may compromise well-being for cancer patients receiving palliative care. Clinicians should consider periodic screening for r/s struggles and referrals for spiritual care if indicated.
Keywords: Religion, Spirituality, Religious/spiritual struggles, Cancer, Palliative care, Negative religious coping
Introduction
A substantial body of research has described the importance of religion and spirituality (r/s) in coping with cancer and other serious illness (1-3). Various dimensions of r/s are associated with better physical, emotional, and social outcomes (4-6). However, there is also evidence that some r/s factors are associated with poorer outcomes. Numerous studies in clinical and community samples report aspects of r/s such as spiritual pain, spiritual distress and r/s struggles to be associated with greater physical and psychological distress (for reviews, see for example 7-11).
Various types of r/s distress have been described (12) and evidence of their associations with poorer outcomes has been reported. For example, spiritual pain has been defined as ‘pain deep in your soul/being that is not physical’, assessed with a 1-item screening question (13). One of the first studies about spiritual pain was a small qualitative study in which 96% of advanced cancer patients reported experiencing spiritual pain (13). Subsequent studies in larger advanced cancer samples reported a prevalence of more than 40% (14-16). Spiritual pain was associated with indicators of physical and psychological distress, including higher levels of physical pain, drowsiness, anxiety, depression, along with lower self-perceived religiosity and lower spiritual quality of life (13-16). One approach to assessing spiritual distress included despair, anxiety/dread, meaningless, and guilt (17). Distress on these and several other domains was found to be present in 44% of palliative care in-patients with cancer, with associations to younger age, pain and depression.
In this study we focused on the concept of r/s struggles. R/S struggles has been described as ‘tensions, conflicts, and negative emotions around sacred matters’ (11). Distress related to r/s struggle can persist, but in other cases r/s struggle can lead to r/s growth (9). Three prior studies have examined r/s struggles in a palliative (cancer) population. R/S struggle was found to be present for 27-58% of patients (18-20), positively associated with distress, confusion and depression, and negatively associated with physical and emotional well-being, as well as quality of life (18-20).
Much of the evidence about the association of r/s struggles with poorer outcomes in clinical samples comes from studies that used the 7-item negative religious coping subscale of the Brief Religious Coping Scale (Brief-RCOPE, 21). Items of this subscale primarily measure struggles with the divine, but other forms of r/s struggles have been identified such as interpersonal and intrapersonal struggles (9). Exline and colleagues have developed and validated a self-report measure, the Religious and Spiritual Struggles Scale (RSS), that includes these other dimensions (22). The original RSS is a 26-item measure but a 14-item version, the RSS-14, has been developed (23). Advantages of this measure are that it is concise, assesses 6 different dimensions of r/s struggle and is suitable for use with people from different religious backgrounds or none.
To date there has been one report about r/s struggles using the RSS-14 in a psychotherapy sample (24), but no studies with any medical samples. The aim of the present study was therefore to examine the prevalence, predictors and correlates of r/s struggles as measured by the RSS-14 and its subdomains in a cancer population receiving palliative care. We were interested in a set of demographic, religious and medical predictors, as well as whether, consistent with previous findings, the new measure was correlated with outcomes such as dignity and quality of life.
Methods
Sample
This study employed the baseline data from the study ‘Dignity Therapy RCT led by Nurses or Chaplains for Elderly Cancer Outpatients’ (1R01CA200867, 25). Participants were recruited from six outpatient palliative care services across the US: Northwestern University Hospital, Rush University Medical Center, MD Anderson Cancer Center, Emory University, University of California at San Francisco, and University of Florida Health. Inclusion criteria for patients were age 55 or older with a cancer diagnosis, English literate and physically able to partake in the study (Palliative Performance Scale score >50; (26)). Patients were excluded when they had a history of psychosis, were legally blind or cognitively impaired (Mini Mental Status Exam score <24; 27). The study was approved by the Institutional Review Boards of all participating sites. The trial registration number is NCT03209440.
Measures
Demographic characteristics and time since diagnosis were obtained from interviews or medical record review. Income was collapsed to 3 categories: less than $20,000, $20,000-$49,999 and $50,000 or more. Other study measures included:
1. 14-item religious and spiritual struggles scale (RSS-14).
We assessed spiritual struggles with the self-report RSS-14 (23). The scale assesses six domains of r/s struggles: divine (negative emotion centered on beliefs about God or a perceived relationship with God), demonic (concern that the devil or evil spirits are attacking an individual or causing negative events), interpersonal (concern about negative experiences with religious people or institutions; interpersonal conflict around religious issues), moral (wrestling with attempts to follow moral principles; worry or guilt about perceived offenses by the self), doubt (feeling troubled by doubts or questions about one’s r/s beliefs), and ultimate meaning (questions about the deeper meaning of one’s life). Questions were rated on a 5-point Likert scale from not at all/NA to a great deal (0-4, with a total range of 0-56). The score for the total scale and each of the subdomains was created by calculating the mean of the fourteen items or the items in each subdomain respectively; higher scores indicate higher levels of r/s struggles. In the present study the Cronbach’s α for the total score was 0.79.
2. Religious Characteristics.
Religious involvement was measured with three standard items (28). The first item asked the patient about their religious preference. Responses were coded in three categories: Christian, Other religion (which includes Jewish, Muslim, Hindu, Buddhist and Other religion), and No religion (which includes spiritual but not religious). The second item asked if the patient carried their religious beliefs over into all other dealings in life (Intrinsic Religiousness), coded from strongly disagree (a) to strongly agree (d) with higher scores reflecting higher religiousness. The third item asked the patient how often they prayed privately in places other than at a house of worship, coded from more than once a day (a) to never (g).
3. Edmonton Symptom Assessment Scale (ESAS).
We measured symptom burden with the ESAS, a widely used measure of common symptoms for patients with cancer and other serious illness (29). The 9-items of the ESAS assess pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. Each symptom is rated from 0 “no symptoms” to 10 “worst possible symptoms” (the total range is 0-90). We used the sum of the 9 symptoms to measure total symptom burden (30). In the present study the Cronbach’s α for total symptom burden was 0.81.
4. Patient Dignity Inventory (PDI).
Patient dignity was assessed with the PDI, a self-report 25-item measure of dignity-related distress encapsulating physical, psychosocial, spiritual and existential issues that may influence a palliative patient’s sense of dignity (31). Sample items include: ‘Feeling like I am no longer who I was’, or ‘Feeling that my health and care needs have reduced my privacy’. The items are rated on a 5-point Likert scale from not a problem to an overwhelming problem (1-5, the total range is 25-125). Scores for PDI were created by summing the item scores; higher scores represented more dignity-related distress. In the present study the Cronbach’s α for the PDI was 0.93.
5. Quality of Life at the End of Life (QUAL-E).
The QUAL-E is a self-report measure that assesses quality of life of palliative patients in five different domains (32, 33). For this study we used two domains: Completion and Preparation. The 7-item Completion subscale includes items about having been able to say important things to loved ones, having been able to make a difference in the lives of others, having a sense of meaning in life and feeling at peace, etc. The 4-item Preparation subscale includes items about worrying about being a burden, worrying about one’s family, financial strain, and regrets about life (reverse scored). The items were rated on a 5-point Likert scale from not at all to completely (1-5, the total range for the Completion subscale is 7-35, the total range for the Preparation subscale 4-20). Scores for Preparation and Completion were created by summing the item scores; higher scores represent better quality of life. In the present study the Cronbach’s α for Preparation was 0.66, and for Completion it was 0.81. The correlation between the subscales was r=.23, P<.001.
Analysis
Descriptive statistics were calculated for study variables including the mean, standard deviation, frequency, percentage, maximum and minimum and the amount of missing data. We used bivariate analyses (independent t test, ANOVA, and correlation test) to examine the predictors and correlates of total RSS-14 and its subdomains. We used a series of regression models to examine the independent association of demographic and religious predictors and other correlates with total RSS-14. Model 1 included only demographical variables, model 2 added religion variables, models 3-5 respectively examined the demographically adjusted association of ESAS, PDI and the two QUAL-E subscales with total RSS-14. Model 6 examined the association of all the covariates with the total RSS-14 score. For the bivariate and multivariate analyses, missing data were imputed using Multiple Imputation, where multiple completed datasets were generated under fully conditional specification. Inference was performed separately on each imputed dataset and then aggregated using Rubin’s rules (34). For the bivariate analysis, and multivariate analyses we used the Benjamini-Hochberg procedure to adjust for multiple testing (35). Adjusted p-values are reported with statistical significance set at P<.05. Data were analyzed using the statistical software R (36).
Results
The study included 331 participants. Demographic characteristics are reported in Table 1. The sample consisted of slightly more women than men with an average age of 66 years. The sample was mostly white, married or partnered and with at least some college education. The most common cancer types were lung cancer (15%) and breast cancer (12%) (for details see supplemental table 1). The sample had high levels of religious involvement. Approximately three-quarters reported a Christian religious affiliation. Similarly, three-quarters reported that they carried their religious beliefs over into their dealings with life and prayed at least once a day. On average, the symptom burden was low with a mean ESAS score of 26.1 (SD 15.7; range 0-73; 90 would indicate worst possible symptoms). The mean total score of the PDI was 42.4 (SD 13.7; range 25-92; 125 would indicate worst possible dignity distress). The score of the QUAL-E Preparation subscale was quite high with a total mean of 15.0 (SD 3.4; range 4-20; 20 would indicate best possible Preparation). The same is true for the QUAL-E Completion subscale with a mean total score of 26.7 (SD 5.3; range 8-35; 35 would indicate best possible Completion).
Table 1.
Study Participant Characteristics (N=331)
| Variable | Missing n (%) | Category | n (%)/mean (SD), [range] |
|---|---|---|---|
| Age | 0 (0%) | 66.4 (7.4), [55, 93] | |
| Gender | 1 (0%) | Female | 186 (56%) |
| Male | 144 (44%) | ||
| Racea | 1 (0%) | White | 237 (72%) |
| Other | 93 (28%) | ||
| Marital status | 32 (10%) | Married/partnered | 173 (58%) |
| Single | 126 (42%) | ||
| Education | 32 (10%) | High school or less | 73 (24%) |
| Some college/vocational | 90 (30%) | ||
| Bachelors degree | 65 (22%) | ||
| Graduate degree | 71 (24%) | ||
| Income | 54 (16%) | less than $20,000 | 66 (24%) |
| $20,000-$49,999 | 69 (25%) | ||
| $50,000 or more | 142 (51%) | ||
| Time since diagnosis (years) | 70 (21%) | 4.0 (4.6), [0.0, 23.9] | |
| Religious affiliationb | 28 (8%) | Christian | 233 (77%) |
| Other religion | 37 (12%) | ||
| No religion | 33 (11%) | ||
| Intrinsic religiousness | 30 (9%) | Strongly disagree | 23 (8%) |
| Disagree | 35 (12%) | ||
| Agree | 115 (38%) | ||
| Strongly agree | 128 (43%) | ||
| Frequency of private prayer | 29 (9%) | Less than monthly | 38 (13%) |
| Monthly-weekly | 41 (14%) | ||
| Once a day | 83 (27%) | ||
| More than once a day | 140 (46%) | ||
| ESAS | 9 (3%) | 26.1 (15.7), [0, 73] | |
| PDI | 24 (7%) | 42.4 (13.7), [25, 92] | |
| QUAL-E | 4 (1%) | Preparation | 15.0 (3.4), [4, 20] |
| 6 (2%) | Completion | 26.7 (5.3), [8, 35] |
Other includes Black or African American 73 (22%), Asian 4 (1%), American Indian or Alaska Native 1 (<1%), Native Hawaiian or other Pacific Islander 1 (<1%), Multi-racial 3 (1%), and Other or Unknown 11 (3%).
Other religion includes Jewish 12 (4%), Buddhist 4 (1%), and Other 21 (7%).
ESAS=Edmonton Symptom Assessment Scale
PDI=Patient Dignity Inventory
QUAL-E=Quality of Life at the End of Life
Table 2 shows patient ratings of each RSS-14 item and the total RSS-14. Generally, scores on the RSS-14 are positively skewed which is why we treated any elevation in scores as meaningful. Approximately 66% reported some r/s struggles (≥2) and approximately 20% indicated ‘quite a bit’ or ‘a great deal’ of struggle (≥4) for at least one item. The proportions with reports of some r/s struggles (with ‘quite a bit’ or ‘a great deal’ of struggles shown in parentheses) for at least one item in the subdomains were: 32% (6%) in interpersonal struggles, 31% (2%) in moral struggles, 28% (4%) in doubt struggles, 28% (5%) in divine struggles, 26% (5%) in ultimate meaning struggles, and 17% (6%) in demonic struggles. The individual items with highest proportions reporting some struggles were ‘Felt guilty for not living up to my moral standards’ (25%), ‘Felt troubled by doubts or questions about religion or spirituality’ (22%), ‘Felt angry at God’ (21%) and 'Questioned whether life really matters’ (21%). The items with lowest proportions of reporting struggles were ‘Felt hurt, mistreated, or offended by religious/spiritual people’ (12%), ‘Worried that the problems I was facing were the work of the devil or evil spirits’ (12%) and ‘Felt as though God had abandoned me’ (11%).
Table 2.
Participant Responses for the Brief Religious and Spiritual Struggles Scale (N=331)a
| Subdomain | Item |
Not at
all/Does not apply |
A little bit | Somewhat |
Quite a
bit |
A great
deal |
Average score (SD) [range] |
|---|---|---|---|---|---|---|---|
| Divine struggles | Felt angry at God | 260 (79%) | 42 (13%) | 16 (5%) | 8 (2%) | 3 (1%) | 1.2 ( 0.5 ) [1-4.3] |
| Felt as though God was punishing me | 282 (86%) | 30 (9%) | 13 (4%) | 3 (1%) | 1 (0%) | ||
| Felt as though God had abandoned me | 291 (89%) | 22 (7%) | 10 (3%) | 3 (1%) | 2 (1%) | ||
| Demonic struggles | Felt attacked by the devil or by evil spirits | 277 (84%) | 28 (9%) | 8 (2%) | 8 (2%) | 8 (2%) | 1.3 ( 0.7 ) [1-5.0] |
| Worried that the problems I was facing were the work of the devil or evil spirits | 290 (88%) | 21 (6%) | 10 (3%) | 3 (1%) | 5 (2%) | ||
| Interpersonal struggles | Felt hurt, mistreated, or offended by religious/ spiritual people | 290 (88%) | 26 (8%) | 7 (2%) | 2 (1%) | 4 (1%) | 1.3 ( 0.5 ) [1-4.7] |
| Had conflicts with other people about religious/spiritual matters | 276 (84%) | 33 (10%) | 13 (4%) | 4 (1%) | 3 (1%) | ||
| Felt angry at organized religion | 263 (80%) | 27 (8%) | 23 (7%) | 7 (2%) | 8 (2%) | ||
| Moral struggles | Wrestled with attempts to follow my moral principles | 279 (85%) | 32 (10%) | 14 (4%) | 3 (1%) | 0 (0%) | 1.3 ( 0.5 ) [1-4.0] |
| Felt guilty for not living up to my moral standards | 245 (75%) | 57 (17%) | 19 (6%) | 5 (2%) | 1 (0%) | ||
| Doubt struggles | Felt troubled by doubts or questions about religion or spirituality | 258 (78%) | 48 (15%) | 14 (4%) | 4 (1%) | 6 (2%) | 1.3 ( 0.6 ) 1-5.0] |
| Felt confused about my religious/spiritual beliefs | 275 (84%) | 33 (10%) | 14 (4%) | 5 (2%) | 2 (1%) | ||
| Ultimate meaning struggles | Questioned whether life really matters | 260 (79%) | 44 (13%) | 13 (4%) | 6 (2%) | 5 (2%) | 1.3 ( 0.6 ) [1-4.5] |
| Felt as though my life had no deeper meaning | 271 (82%) | 36 (11%) | 15 (5%) | 4 (1%) | 3 (1%) | ||
| Total scale | 1.3 (0.4) [1-3.1] |
The number of missing per item ranged from 1-4 (0%-1%).
The results of the bivariate analysis are displayed in Tables 3 and 4. There was no statistically significant association between the total RSS-14 score and any demographic or religious variables. Greater symptom burden (ESAS) was positively associated with greater r/s struggles (P<.001). Higher scores for total RSS-14 were associated with greater dignity distress (PDI) and lower quality of life (QUAL-E) (P< .001).
Table 3.
Bivariate correlation of RSS-14 total and subdomain scores with continuous predictors and correlates (N=331)a
| Variable | Total | Divine | Demonic | Inter- personal |
Moral | Doubt | Ultimate meaning |
|---|---|---|---|---|---|---|---|
| Age | −0.12 | −0.13* | −0.11 | 0.02 | −0.08 | −0.15* | −0.11 |
| Education | 0.07 | 0.04 | −0.09 | 0.15* | −0.02 | 0.12 | 0.07 |
| Income | −0.06 | −0.05 | −0.12 | 0.08 | −0.05 | −0.07 | −0.06 |
| Intrinsic Religiousness | 0.02 | −0.01 | 0.09 | −0.03 | 0.03 | −0.09 | −0.04 |
| Frequency of private prayer | −0.03 | −0.01 | 0.20** | −0.17* | 0.04 | −0.16* | −0.07 |
| ESAS | 0.27*** | 0.19** | 0.23*** | 0.06 | 0.23*** | 0.20** | 0.30*** |
| PDI | 0.51*** | 0.36*** | 0.26*** | 0.23*** | 0.35*** | 0.43*** | 0.49*** |
| QUAL-E Preparation | −0.34*** | −0.18** | −0.16* | −0.16* | −0.34*** | −0.27*** | −0.36*** |
| QUAL-E Completion | −0.30*** | −0.24*** | −0.14* | −0.16* | −0.25*** | −0.25*** | −0.23*** |
Values are Spearman correlation coefficients.
P < .05
P < .005
P < .001. Adjusted p-values were used.
RSS-14=Brief Religious and Spiritual Struggles Scale
ESAS=Edmonton Symptom Assessment Scale
PDI=Patient Dignity Inventory
QUAL-E=Quality of Life at the End of Life
Table 4.
Bivariate analyses of the RSS-14 total and subdomain scores with discrete predictors (N=331)a
| Variable | Total | Divine | Demonic | Inter- personal |
Moral | Doubt | Ultimate meaning |
|
|---|---|---|---|---|---|---|---|---|
| Sex | Male | 1.24 (0.36) | 1.15 (0.38) | 1.31 (0.80) | 1.23 (0.49) | 1.33 (0.56) | 1.26 (0.56) | 1.30 (0.61) |
| Female | 1.26 (0.41) | 1.30 (0.60) | 1.21 (0.62) | 1.29 (0.59) | 1.22 (0.50) | 1.31 (0.67) | 1.28 (0.63) | |
| Race | White | 1.23 (0.38) | 1.23 (0.54) | 1.16 (0.57)** | 1.27 (0.54) | 1.26 (0.55) | 1.30 (0.63) | 1.28 (0.58) |
| Other | 1.29 (0.41) | 1.23 (0.47) | 1.48 (0.93)** | 1.26 (0.58) | 1.27 (0.47) | 1.26 (0.60) | 1.33 (0.70) | |
| Marital status | Married/partnered | 1.21 (0.38) | 1.18 (0.46) | 1.20 (0.64) | 1.25 (0.54) | 1.23 (0.54) | 1.25 (0.60) | 1.25 (0.56) |
| Single | 1.30 (0.40) | 1.31 (0.58) | 1.32 (0.78) | 1.28 (0.57) | 1.31 (0.51) | 1.34 (0.65) | 1.35 (0.69) | |
| Religious affiliation | Christian | 1.23 (0.38) | 1.22 (0.48) | 1.32 (0.78)* | 1.18 (0.41)*** | 1.26 (0.50) | 1.24 (0.55) | 1.26 (0.61) |
| Other | 1.33 (0.44) | 1.30 (0.59) | 1.02 (0.30)* | 1.56 (0.85)*** | 1.34 (0.68) | 1.48 (0.89) | 1.34 (0.64) | |
| None | 1.30 (0.42) | 1.21 (0.67) | 1.05 (0.22)* | 1.53 (0.75)*** | 1.25 (0.52) | 1.40 (0.70) | 1.42 (0.65) |
Values are mean (SD).
P < .05
P < .005
P < .001. Independent t tests and ANOVA were performed. Adjusted p-values were used.
RSS-14=Brief Religious and Spiritual Struggles Scale
The pattern of no statistically significant associations with demographic or religious variables persisted for most subdomains of the RSS-14; younger age was associated with higher divine and doubt struggles; non-whites had higher demonic struggle; higher education was associated with higher interpersonal struggle. Compared to those with a Christian religious affiliation, those with other and no affiliation had lower scores on demonic, and higher scores on interpersonal struggle. Higher frequency of prayer was associated with higher demonic, and lower interpersonal and doubt struggles. Higher scores for all RSS subdomains were associated with higher symptom burden (P<.005) except for interpersonal struggle. Higher scores for all subdomains were also associated with greater dignity distress and lower quality of life.
Table 5 reports the results of the multivariable analysis of the total score of the RSS-14. Again, there was no statistically significant association between r/s struggles and any of the demographic or religious variables (Model 1 and 2). Consistent with the bivariate results, in demographically adjusted models greater symptom burden remained associated with greater r/s struggles (Model 3; P<.001). In demographically adjusted models greater dignity distress, and lower quality of life were associated with higher scores for total RSS-14 (Model 4 and 5; P<.001). When all predictors were included in the model, PDI was the only variable with a significant association with r/s struggles (Model 6; p<.001). This might be explained by the bivariate associations between the ESAS, PDI and the Preparation and Completion QUAL-E subscales (see Supplemental Table 2). There were moderate to strong associations (all P <.001) among all these measures.
Table 5.
Regression analysis for RSS-14 total (N=331)a
| Variable | Model 1 | Model 2 | Model 3 | Model 4 | Model 5 | Model 6 |
|---|---|---|---|---|---|---|
| Age | −0.117 (0.056) |
−0.121 (0.057) |
−0.090 (0.055) |
−0.025 (0.050) |
−0.056 (0.053) |
−0.016 (0.050) |
| Female [ref. Male] | −0.042 (0.115) |
−0.046 (0.118) |
−0.017 (0.112) |
−0.010 (0.100) |
−0.085 (0.106) |
−0.054 (0.101) |
| Race other [ref. White] | 0.075 (0.129) |
0.095 (0.133) |
0.110 (0.125) |
0.165 (0.112) |
0.243 (0.121) |
0.254 (0.114) |
| Single [ref. Married/partnered] | 0.236 (0.135) |
0.230 (0.135) |
0.208 (0.132) |
0.175 (0.120) |
0.136 (0.127) |
0.105 (0.119) |
| Education | 0.086 (0.054) |
0.058 (0.058) |
0.064 (0.053) |
−0.033 (0.050) |
0.040 (0.051) |
−0.070 (0.053) |
| Income | −0.011 (0.089) |
−0.009 (0.090) |
0.028 (0.088) |
0.082 (0.080) |
0.015 (0.083) |
0.063 (0.078) |
| Religion other [ref. Christian] | 0.246 (0.191) |
0.272 (0.166) |
||||
| Religion none [ref. Christian] | 0.176 (0.213) |
0.319 (0.186) |
||||
| Intrinsic Religiousness | 0.044 (0.076) |
0.107 (0.066) |
||||
| Frequency of private prayer | −0.025 (0.071) |
−0.043 (0.061) |
||||
| ESAS [higher scores indicate higher symptom burden] | 0.247 (0.054)*** |
−0.007 (0.055) |
||||
| PDI [higher scores indicate higher dignity-related problems] | 0.520 (0.051)*** |
0.442 (0.062)*** |
||||
| QUAL-E Preparation [higher scores indicate higher QoL] | −0.276 (0.054)*** |
−0.093 (0.055) |
||||
| QUAL-E Completion [higher scores indicate higher QoL] | −0.233 (0.053)*** |
−0.158 (0.052) |
||||
| R2 adjusted | 0.02 | 0.02 | 0.08 | 0.26 | 0.17 | 0.30 |
Values are standardized regression coefficients (SE). Adjusted p-values are reported.
P ≤ .05
P ≤ .005
P ≤ .001.
RSS-14=Brief Religious and Spiritual Struggles Scale
ESAS=Edmonton Symptom Assessment Scale
PDI=Patient Dignity Inventory
QUAL-E=Quality of Life at the End of Life
Discussion
In this study we investigated r/s struggles using the new measure, RSS-14, in a cancer population receiving palliative care. Our findings suggest that some r/s struggles are experienced by approximately 66% of the patients, with 20% reporting moderate or high struggle. If we look at the subdomains, the prevalence of some struggle ranges from 17-32% with demonic struggles being less common and interpersonal struggles more common. The prevalence of moderate to great struggles ranged from 2-6% with moderate to great moral struggles being less common and moderate to great demonic and interpersonal struggles being more common. For the individual items any r/s struggle ranged from 11% to 25%. The prevalence of 66% for some struggles in the present study is slightly higher than in other studies. Tarakeshwar et al. (18) found a prevalence of 53.4% for whites, 26.7% for non-whites, 31.5% for males and 42.3% for females. Winkelman et al. (19) found that 58% of patients experienced one or more forms of r/s struggles. If we look more broadly at other studies that did not specifically focus on a palliative cancer population but on other clinical populations, r/s struggles was found to be present for 15% to 48% of patients (37-39). These differences in prevalence might have to do with the different methods of assessing r/s struggles. We used a comprehensive measure assessing more types of r/s struggles, whereas the other studies focused on divine struggles. These differences in prevalence may also be related to differences in average age; r/s struggle has been found to be associated with younger age (37) or disease trajectories in the samples, r/s struggles have been found to be associated with poorer physical health (20,38,40-43).
R/S struggles appear to be present for 2 in 3 patients, and moderate to high for 1 in 5. It is associated with greater symptom burden, greater dignity-related distress and poorer quality of life. These relationships are mostly consistent with evidence using earlier measures of r/s struggles. Tarakeshwar et al. (18), Winkelman et al. (19) and Hills et al. (20) found r/s struggles of palliative patients to be associated with worse overall quality of life and lower scores on psychological and distress dimensions. However, only Hills et al. (20) found an association with poorer physical well-being. Studies in other clinical populations found r/s struggles to be associated to poorer physical health (38,40-43), worse mental health (39,42,43), emotional distress (37), depression (37-42,44-46), anxiety (38,44-46), lower life satisfaction (39,41,47) and lower quality of life (40,46-48). Associations between r/s struggles and mental health measures were more robust than associations with physical health.
We found no statistically significant associations between total r/s struggles and demographic factors in the bivariate analysis. Among the subdomains there were a few associations of higher r/s struggles to demographic factors, namely for younger age (divine and doubt), non-whites (demonic) and higher education (interpersonal). Similar to our findings, previous studies did not report any consistent associations with demographic variables (20,38,41,43). Specifically, a few studies report inconsistent associations of higher r/s struggles to younger age (37,41,47) or older age (45), non-whites (18), partner-less women (45), and lower education (45) or higher education (18).
Religious factors were also not associated with total r/s struggles in the bivariate and multivariable analyses. For the subdomains, other and no religious affiliation were associated with lower demonic, and higher interpersonal struggles; higher frequency of prayer was associated with higher demonic, and lower interpersonal and doubt struggles. These findings are consistent with previous studies (38). How could it be that religion is not associated with r/s struggles? One possibility is that higher levels of religious involvement do not protect people against r/s struggles, in other words, religious people are not more or not less likely to experience r/s struggles.
In our final multivariable model that included all the covariates (Model 6) the associations between both the ESAS and the QUAL-E subscales and r/s struggles are no longer statistically significant while the association between the PDI and r/s struggles remains statistically significant. These changes point to the possibility that dignity-related distress is a mediator of the associations between symptom and quality of life and r/s struggles. It may be, for example, that the negative effects of symptoms on r/s struggles have less to do with the symptoms themselves and more to do with the toll that symptoms take on maintaining a sense of dignity. This possibility should be explored in future research that includes more formal tests of mediation.
Several limitations should be acknowledged when interpreting these findings. First of all, our sample is likely to have fewer symptoms and less distress due to the inclusion criteria. The findings therefore might not be representative of all cancer patients receiving palliative care. Secondly, our sample had a small number of Latino and Asian patients, perhaps also due to the requirement that patients should be English speaking. Thirdly, the sample was predominantly Christian, which limits our ability to generalize our findings to patients of other religions or none. Lastly, this is a correlation study and causality inferences can therefore not be made.
A strength of the present project is the use of the RSS-14 and the description of 6 specific types of r/s struggles, several of which have not been previously explored in palliative care or other clinical samples. Future research in these samples is needed to confirm our findings regarding the prevalence, predictors and correlates of r/s struggle. Studies in samples with greater religious and spiritual diversity are especially important. In this study, we have mostly concentrated on the total score of the RSS-14. Future research among patients receiving palliative care should focus on the subdomains and examine if r/s struggles in some subdomains are more salient and cause more problems with physical, mental and emotional well-being than others. For example, divine or demonic struggles may be more uncommon but when occurring compromise well-being, or illness could cause doubt about long held beliefs or raise questions about ultimate meaning. Another area for future research would be longitudinal studies that would permit investigation of primary, secondary and complicated (reciprocal) models of r/s struggles (49). Regarding symptom burden for example, more r/s struggles could worsen symptoms (primary model). However more symptoms may also trigger r/s struggles (secondary model). A third option would be a bidirectional association where r/s struggles and symptom burden would aggravate each other (complex model). Previous longitudinal research has demonstrated that elevated levels of r/s struggles that persist over time are associated with poorer outcomes (43). Longitudinal research would allow tracking of trajectories of r/s struggles, studying for example if there is a group of patients that has transiently high struggles that get resolved or lead to r/s growth, and a group that has elevated struggles that does not resolve and requires help from a professional. Finally, future research will benefit from using a sample that is more representative of cancer patients receiving palliative care.
The RSS-14 is a new concise measure that allows for the assessment of multiple types of r/s struggles for people from different religious backgrounds or none. Our findings suggest that a significant majority (66%) of cancer patients receiving palliative care report some degree of r/s struggle. Moreover, those who report r/s struggle may experience compromised well-being. Clinicians should consider periodic screening for r/s struggles and referrals for spiritual care if indicated (50). Addressing r/s struggles could improve the quality of life of patients with advanced illness who are receiving palliative care.
Supplementary Material
Key message: In this article we describe the prevalence, predictors and correlates of religious and spiritual (r/s) struggles for palliative cancer patients. Some r/s struggle was reported by 66%, moderate to high by 20% of patients. It was associated with greater symptom burden, greater dignity-related problems and poorer quality of life in bivariate analyses, and dignity-related problems in multivariate analyses.
Acknowledgement
This research was made possible by Grant Number 1R01CA200867 from the National Institutes of Health (NIH), National Cancer Institute (NCI). The information in this article is solely the responsibility of the authors and does not necessarily represent the views of the NIH or NCI. The final peer-reviewed manuscript is subject to the National Institutes of Health Public Access Policy. The authors thank the patients and clinicians for giving their time to advance science.
Footnotes
Disclosures
The authors declare no competing interests.
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