Key Points
Question Among adolescents and young adults with cancer, is there an association between spirituality and patient-reported outcomes, and are these outcomes associated with a sense of meaning, peace, and comfort provided by faith?
Findings In this cross-sectional study of 126 adolescents and young adults with cancer, structural equation modeling revealed that meaning and peace were associated with aspects of spirituality and religiousness as well as anxiety, depressive, and fatigue symptoms.
Meaning In this study, participants’ sense of meaning and peace was associated with religiousness and with anxiety and depression, possibly representing an underappreciated intervention target.
Abstract
Importance The associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.
Objective To model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference.
Design, Setting, and Participants This cross-sectional study used baseline data, collected from 2016 to 2019, from an ongoing 5-year randomized clinical trial being conducted at 4 tertiary-referral pediatric medical centers in the US. A total of 366 adolescents were eligible for the clinical trial, and 126 were randomized; participants had to be aged 14 to 21 years at enrollment and be diagnosed with any form of cancer. Exclusion criteria included developmental delay, scoring greater than 26 on the Beck Depression Inventory II, non-English speaking, or unaware of cancer diagnosis.
Exposures Spiritual experiences, values, and beliefs; religious practices; and overall self-ranking of spirituality’s importance.
Main Outcomes and Measures Variables were taken from the Brief Multidimensional Measurement of Religiousness/Spirituality (ie, feeling God’s presence, daily prayer, religious service attendance, being very religious, and being very spiritual) and the spiritual well-being subscales of the Functional Assessment of Chronic Illness Therapy (meaning/peace and faith). Predefined outcome variables were anxiety, depressive symptoms, fatigue, and pain interference from Patient-Reported Outcomes Measurement Information System pediatric measures.
Results A total of 126 individuals participated (72 [57.1%] female participants; 100 [79.4%] white participants; mean [SD] age, 16.9 [1.9] years). Structural equation modeling showed that meaning and peace were inversely associated with anxiety (β = –7.94; 95% CI, –12.88 to –4.12), depressive symptoms (β = –10.49; 95% CI, –15.92 to –6.50), and fatigue (β = –8.90; 95% CI, –15.34 to –3.61). Feeling God’s presence daily was indirectly associated with anxiety (β = –3.37; 95% CI, –6.82 to –0.95), depressive symptoms (β = –4.50; 95% CI, –8.51 to –1.40), and fatigue (β = –3.73; 95% CI, –8.03 to –0.90) through meaning and peace. Considering oneself very religious was indirectly associated with anxiety (β = –2.81; 95% CI, –6.06 to –0.45), depressive symptoms (β = −3.787; 95% CI, –7.68 to –0.61), and fatigue (β = –3.11, 95% CI, –7.31 to –0.40) through meaning and peace. Considering oneself very spiritual was indirectly associated with anxiety (β = 2.11; 95% CI, 0.05 to 4.95) and depression (β = 2.8, 95% CI, 0.07 to 6.29) through meaning and peace. No associations were found between spiritual scales and pain interference.
Conclusions and Relevance In this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant’s sense of meaning and peace, which is a modifiable process. Although these results do not establish a causal direction, they do suggest palliative interventions addressing meaning-making, possibly including a spiritual or religious dimension, as a novel focus for intervention development.
Discussion
To our knowledge, this is the first study to document an indirect association of meaning and peace with religiousness and spirituality as well as the likelihood of anxiety, depressive symptoms, and fatigue in AYAs with cancer. Specifically, this study went beyond a bivariate approach, demonstrating that feeling God’s presence and identifying as a very religious person were associated with the extent of anxiety, depressive symptoms, and fatigue. The model proposes an indirect association through a sense of meaning and peace. Although the causal direction of these associations cannot be established from our study, these results suggest that a novel and potentially efficacious intervention target may be a sense of meaning and peace when considering ways to improve anxiety, depression, and fatigue among AYAs with cancer.
Findings from the present study are also consistent with previously published theoretical models and empirical data. Park’s work on meaning, including religious and spiritual meaning,32,47,48 posits that religious and spiritual beliefs and practices inform constructed meaning, which is related to health outcomes. Meaning-making coping mediates the association of religiosity with psychological adjustment.33 Religion and spirituality are not important to all AYAs; Salsman and colleagues49 recommend identifying subgroups for whom dimensions of religion and spirituality are important to their health-related quality of life and offering them interventions that include religion and/or spirituality.49
The meaning of a cancer diagnosis is an important factor for AYAs and the adults living with them.47,48,50,51 Clinical attention to constructing meaning of the cancer experience is an important element in improving outcomes.52 Barakat and colleagues52 reported that although distress continued because of having had cancer, finding positive meaning contributed to posttraumatic growth in a sample of 150 AYA cancer survivors and their parents. This is also consistent with findings from a metasynthesis by Kim and colleagues of 51 qualitative studies,53 which revealed that constructed meaning fosters resilience and inner growth and that the benefits persist well into survivorship. They noted the different meanings of an adolescent’s cancer experience from their parents’ and suggested that care be individualized for patients and for patient-parent dyads to maximize outcomes. Rosenberg and colleagues reported54,55 positive outcomes (ie, resilience, cancer-related quality of life, distress) with skills-based intervention for AYAs with cancer that included meaning as a component. Moskowitz and colleagues56 reported improved outcomes in positive affect, antidepressant use, and intrusive or avoidant thoughts using an intervention that included constructed meaning.
The current study’s findings support the inclusion of constructed meaning as part of AYA oncology care.55 This approach has also been recognized by the government of the Netherlands, which recently adopted a person-centered definition of health, including attention to meaning and meaninglessness.57 Furthermore, that country’s health budget provides for care at home by a recognized spiritual caregiver to address issues of illness-related meaning, focusing on persons older than 50 years and palliative care patients (including children) and their families.58 Demonstration of the effects of these outcomes is in progress.
We anticipated finding an association between spiritual constructs and PROs and did not find one. It is possible that no such association exists in this population. It may also be because of the way faith was operationalized. The FACIT faith subscale quantifies the degree of comfort and strength faith provides rather than the magnitude of its importance. Although comfort and strength of faith were not associated with the PROs measured, the actual importance of faith may be motivational, prohealthy behaviors that may relate to PROs. The current study also assessed how pain interferes with life and found no relationship with spiritual or religious variables. Wachholtz and colleagues59 reviewed the religious and spiritual literature related to pain, noting that the mixed results between religion, spirituality, and pain may be the result of focusing on a single aspect of the multidimensional experience of pain. Pain interference may not be an aspect of pain associated with the religious and spiritual constructs quantified by the measures used in this study. It is also possible that the model used by Wachholtz and colleagues59 is not fully applicable for AYAs.
This study has important clinical implications. All pediatricians and adolescent medicine specialists should practice primary palliative care to minimize AYAs’ suffering in any form. Primary palliative care comprises basic evaluation and management of symptoms and facilitated conversations about goals of care and advance care planning.60 Although many pediatric providers may be reluctant to address these issues, AYAs want providers to address their concerns, including spiritual concerns, and their desire for these to be addressed increases with their disease acuity.61-63 Steinhauser and colleagues have demonstrated the efficacy of a 1-question intervention among adults, asking, “Are you at peace?”64 Such simple, nonthreatening interventions may be a feasible way to explore the topic of peace with AYAs. Their sense of peace and their expressed needs for dealing with death and dying may provide opportunities for the broader use of interdisciplinary palliative care teams.
Specialty care addressing meaning and peace to improve outcomes may take several forms. Referrals to psychologists, who routinely deal with issues of spirituality, meaning, and health, may be appropriate.32,51 Individual and group interventions addressing meaning for people with cancer have shown efficacy for increasing spiritual well-being and for decreasing anxiety, depression, and pain.65-68 Referrals for specialty spiritual care from clinically trained chaplains may also be beneficial.69 Chaplains are trained to work with existential questions of meaning within the framework of the patient’s beliefs.70,71
Meaningful conclusions can be drawn from this study, moving the state of the science of spirituality forward.72 Meaning-making is a complex73 but modifiable process. Clinical application of these findings could facilitate further integration of religious considerations and meaning-making into pediatric palliative care,74 as has been demonstrated with adults.75
Limitations
This study has several limitations. Cross-sectional data do not permit examination of causality, and longitudinal data were not available. There are no universally accepted definitions of spirituality and religion among researchers.76,77 Participants self-defined these terms when completing the questionnaires; the results may be confounded through the use of multiple definitions, although there is evidence that AYAs define these terms similarly to some reseachers.76,78 Several factors limit generalizability. First, it is not possible to generalize beyond the participating population, ie, English-speaking individuals aged 14 to 21 years with cancer in the United States. Second, the sample size dictated a parsimonious model that could not include potential confounders or predicting variables. Finally, the religious and spiritual affiliations of participants did not reflect the US demographic characteristics for this age group. There was a risk of participants providing socially desirable responses by having questions read aloud, although responses were entered by a research assistant who was trained to ask the questions in a way that would minimize bias. If adolescents preferred to enter their own responses, they were permitted; this rarely occurred. Furthermore, this was an analysis of baseline data informing an advance care planning trial. Male patients were more likely to decline participation in the primary study; thus, selection bias may affect the generalizability of these results. Nevertheless, strengths of this study include the application of rigorous scientific methods. First, 39% of those approached agreed to participate. While this is lower than participation rates in psychosocial intervention trials and represents a limitation,79 it is better than the 20% or lower participation rates of individuals aged 15 to 19 years in clinical trials, an enrollment problem identified by the US Centers for Disease Control and Prevention.80-82 Second, use of validated and reliable questionnaires increased replicability and transparency. Third, 99.5% of the data were complete. Fourth, the use of structural equation modeling to identify indirect associations between meaning and peace and/or faith on physical and emotional symptoms addresses weaknesses in the rigor of previous research.
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