Grief and Life Disruption in Young Adults with Advanced Cancer

Abstract

Purpose: Psychological and physical suffering is inherent in the experience of grief in patients with advanced cancer. Grief due to cancer-related losses has not been examined in young adults with cancer. The purpose of this study is to examine the relationship between grief due to cancer-related losses and life disruption due to cancer symptoms in young adults with advanced cancer. Patients and Methods: Fifty-three young adults (20–40 years old) with advanced cancer completed structured clinical interviews that included measures of grief due to cancer-related losses and life disruption due to cancer symptoms. Regression analyses examined the relationship between grief and life disruption. Results: Higher levels of grief were associated with greater life disruption after controlling for an interviewer rating of physical performance status. Conclusions: These results suggest that grief may constitute a unique burden in the cancer experience for young adults with advanced disease, over and above physical performance status. Longitudinal designs with larger data sets are needed to confirm this finding. Nevertheless, this study suggests that grief is problematic for young adults with advanced cancer. Young adults may benefit from clinical assessment of and interventions for grief.

Grief has been defined as a “state of emotional unrest and frustration associated with wanting what one cannot have”¹ in the context of a loss. Yearning for what was lost is the primary characteristic of grief, with disbelief, anger, emotional numbness, and lost sense of self among other grief symptoms.² In addition, grief is a disorder distinct from depression and anxiety, as evidenced by a unique set of symptoms, differential prediction of long-term outcomes, and differential response to treatment.^3–6

Grief has been examined primarily in bereaved individuals. In the context of bereavement, grief has been associated with negative psychological outcomes, including increased risk for major depressive disorder, suicidal ideation, poor mental health, and reduced quality of life.^2,3,7–9 Similar results emerged in a recent study of grief due to losses associated with cancer in older advanced cancer patients, with factor analysis indicating that grief was distinct from depression in this sample. In addition, participants in the top 10% of the distribution of grief scores were more likely to endorse a wish to die, whereas the wish to die was unrelated to meeting criteria for major depressive disorder.¹⁰

Grief has also been associated with negative health outcomes. In a sample of bereaved parents, participants who reported they had not worked through their grief had worse physical health and greater health deterioration than parents whose grief had resolved over time.¹¹ In bereaved spouses, grief assessed 3–6 months post-loss predicted poorer global functioning, impaired sleep, increased risk for cancer, high systolic blood pressure, and cardiac problems 13–25 months post-loss.^5,8,12 Symptoms of prolonged grief disorder persist for at least 6 months post-loss and have been associated with greater functional disability in bereaved samples both cross-sectionally¹³ and over time.²

Grief due to cancer-related losses has not been examined in young adults with cancer. This gap in the literature is notable given that the unique developmental tasks of young adulthood, such as independent decision-making, financial independence, and development of self-identity and worldview,¹⁴ may place them at risk for particular and significant losses. Young adults are often in the process of pursuing advanced education, initiating careers, and developing romantic relationships and families.^15–17 Cancer can interfere with these developmental tasks and life pursuits. For example, fatigue and pain may limit a young adult's ability to fulfill parenting responsibilities, resulting in loss of parenting role and time with children. Early-onset menopause and reduced fertility can lead to loss of the ability to have children, while cognitive changes can disrupt work and school performance and may slow career advancement. In addition, young adults with advanced illness often have limited opportunity to achieve life goals¹⁷ and may perceive this as an additional loss. These developmental characteristics of young adults create a unique and important context for examining grief due to cancer-related losses.

The purpose of this study is to examine the relationship between grief due to cancer-related losses and life disruption due to cancer symptoms in young adults with advanced cancer. Based on previous research, we hypothesize that higher levels of grief will be associated with greater life disruption in this sample.

Methods

Participants and procedures

Participants were a convenience sample of 53 young adult patients with advanced cancer receiving care at the Dana–Farber Cancer Institute. Structured interviews were conducted between April 2010 and March 2011 by a masters-level research assistant and licensed clinical psychologist. Each participant completed a single interview during which the interviewer read each question to the participant who provided a verbal response; interviews lasted approximately 50–90 minutes. Approval was obtained from the Institutional Review Board; all enrolled patients provided written informed consent. To participate, patients had to be 20–40 years of age at the time of study recruitment and have a diagnosis of incurable, recurrent, or metastatic cancer (“advanced cancer”). Participants were excluded if they were not fluent in English, were too physically weak to complete the interview, and/or had scores of 5 or greater on the Short Portable Mental Status Questionnaire. Participants were compensated $25 for their participation.

Measures

Life disruption

The Sheehan Disability scale is a three-item self-report measure assessing participants' perception of life disruption due to cancer symptoms (i.e., “How much have your symptoms disrupted your: work, school, or other activities; social life; family life/home responsibilities?”).¹⁸ Item responses are on a scale from 0 to 10 (mean [M]=16.30, standard deviation [SD]=8.25, range=0–29). Participants' responses were summed to create a total score, with higher scores indicating greater disruption due to cancer symptoms (Cronbach's α=0.78).

Grief

The Prolonged Grief Disorder Scale (PG-12), a validated measure of grief, was used to assess grief due to illness-related losses (e.g., “In the past month, how often have you felt yourself longing or yearning to be healthy again?;” “In the past month, how often have you had intense feelings of emotional pain, sorrow, or pangs of grief related to your illness?”).^1,2,5 The PG-12 items do not explicitly reference grief due to perceptions of impending death. Eleven items are rated on a five-point scale. Responses were summed to create a total grief score (Cronbach's α=0.76), with higher scores indicating more grief (M=23.80, SD=7.05, range=15–42).

Performance status

Participants' physical performance status was assessed with the Karnofsky Performance Scale, an interviewer rating scale from 0 (death) to 100 (normal, no complaints, no evidence of disease; M=77.55, SD=11.42, range=40–90).^19–21 Ratings are based on a trained rater's evaluation of the severity of symptoms and amount of assistance the participant requires to complete “normal activities.”

Statistical analysis

Descriptive analyses were conducted to characterize the sample and measures. Linear regression analyses were used to examine the relationship between life disruption due to cancer symptoms and grief due to cancer-related losses. Participant and disease characteristics were examined as potential confounding variables. Confounding variables were identified through Spearman correlations predicting grief and life disruption. Variables significantly associated with life disruption and grief were added to the regression models.

Results

Table 1 contains sample characteristics and descriptive statistics for measures of grief and life disruption. The sample (n=53) was primarily white (92.5%) and female (66.0%), with a mean age of 33.89 years (SD=5.70). Approximately half of the sample was married (49.1%) and had dependent children (41.5%). More than one-third of the sample consisted of breast cancer patients (39.6%). Other diagnoses included lung, bone, pancreatic, stomach, and esophageal cancer. Half of the sample had metastatic disease (52.5%) with stage III (20.8%) or stage IV (30.2%) illness at diagnosis. Mean time since diagnoses was 3.72 years (SD=3.05). All patients had advanced disease at the time of the interview. Grief and life disruption were significantly correlated with each other (r=0.46, p<0.01).

Table 1.

Demographic and Disease Characteristics and Spearman Correlations with Grief and Life Disruption ^a

		Grief	Life disruption
	n (%)	Spearman's rho
Gender		−0.01	0.034
Female	35 (66.0)
Male	18 (34.0)
Race		—	—
White	49 (92.5)
African American	1 (1.9)
Asian-American/Pacific Islander/Indian	1 (1.9)
Hispanic	2 (3.8)
Marital status		−0.24	−0.30^*
Married	26 (49.1)
Other	27 (50.9)
Dependent children		0.29^*	0.27
Yes	22 (41.5)
No	31 (58.4)
Health insurance		−0.19	−0.032
Yes	52 (98.1)
No	1 (1.9)
Income		−0.10	−0.18
$11,000–20,999	3 (5.7)
$21,000–30,999	3 (5.7)
$31,000–50,999	4 (7.5)
$51,000–99,999	22 (41.5)
$100,000 or more	11 (20.8)
Don't know	10 (18.9)
Cancer diagnosis		−0.20	−0.32^*
Breast	21 (39.6)
Brain tumor	7 (13.2)
Leukemia/lymphoma	5 (9.4)
Colon	3 (5.7)
Soft tissue	2 (3.8)
Other	15 (28.30)
Stage at diagnosis		−0.19	−0.21
I	2 (3.8)
II	8 (15.1)
III	11 (20.8)
IV	16 (30.2)
Unknown	16 (30.2)
Metastatic disease		0.036	0.025
Yes	28 (52.5)
No	25 (47.2)
Drug trial		0.11	0.009
Yes	13 (24.5)
No	40 (75.5)

	Mean (SD)	Spearman's rho
Age range	20–40, 33.89 (5.70)	−0.17	−0.17
Education	15.49 (2.30)	−0.16	−0.40^**
Years since diagnosis	3.72 (3.05)	0.044	0.10
Performance status	77.55 (11.42)	−0.39^**	−0.61^***
Grief^b	23.80 (7.05)		0.46^**
Life disruption	16.30 (8.25)

Gender: 1=Male, 2=Female; Marital Status: 0=Not Married, 1=Married; Dependent Children: 1=Children, 2=No Children; Health Insurance: 1=Yes, 2=No; Income: “Don't Know” not included in correlation; Cancer Diagnosis: 0=Other, 1=Breast; Stage: “Unknown” not included in correlation; Metastasis: 1=Yes, 2=No; Drug Trial: 1=Yes, 2=No. ^bPearson correlation was used to assess the relationship between grief and life disruption. ^*p<0.05, ^**p<0.01, ^***p<0.001. SD, standard deviation.

Regression analysis

Table 1 also contains the analyses identifying confounding variables. Race was not examined as a potential confounding variable because the sample was over 92% white. Physical performance status, as measured by the Karnofsky Performance Scale, was identified as a confounding variable with better performance status associated with less grief and less life disruption, and therefore was included in the regression analysis predicting life disruption.

Table 2 presents the results from the regression model predicting life disruption. Grief was a significant positive predictor of life disruption after controlling for performance status (β=0.28, p<0.05), with higher levels of grief associated with greater life disruption. Performance status was inversely related to life disruption (β=−0.42, p<0.01).

Table 2.

Adjusted Regression Analysis Predicting Life Disruption (N=50)

	Outcome: Life disruption
	F(2,49)=13.06, p<0.001
Predictors	Beta	SE	p-value
Performance status	−0.42	0.092	0.002
Grief	0.28	0.15	0.038

SE, standard error.

Discussion

This study examined the relationship between grief due to cancer-related losses and life disruption in young adults with advanced cancer. Higher levels of grief were associated with greater perceived life disruption, after controlling for an interviewer rating of physical performance status. This finding is consistent with previous studies in bereaved samples but is the first to examine this relationship in young adults. It suggests that grief is a relevant and important construct in young adults with advanced cancer. Normative developmental characteristics of young adults, such as initiation of career and family, as well as ongoing identity development,¹⁴ may place them at risk for significant and unique losses due to cancer.

The strength of the relationship between physical performance status and perceived life disruption in this sample is not surprising. The cancer symptoms that impair performance status are also likely to disrupt young adults' work, school, family, and social lives. In addition, previous research in older cancer patients found that greater somatic symptom burden and pain are associated with higher scores on the Sheehan Disability Scale.^22,23 However, despite the strength of this relationship in the current study, grief due to cancer-related losses was a significant predictor of perceived life disruption, after controlling for physical performance status. It is important to note that life disruption was assessed with a self-report measure of participants' perceptions of the degree to which cancer symptoms disrupt various aspects of their lives, whereas physical performance status was assessed with an objective interviewer rating that is independent of the psychological experience of the young adult. Therefore, the unique variance in life disruption predicted by grief suggests that objective physical and self-reported psychological status uniquely predict perceived life disruption in young adults. Life disruption in this population is not due solely to impaired physical function; rather, grief contributes independently to functional disability over and above physical impairment.

Due to the cross-sectional design of this study, causality cannot be determined. It is also possible that greater life disruption leads to greater grief. However, previous prospective studies have shown that grief predicts poor physical health and greater physical disability over time,^2,3,8,9 suggesting that grief may be the causal factor in this relationship. Longitudinal analyses are needed to clarify the direction of causality in the relationship between grief and life disruption in young adults with cancer.

In this study, participants with dependent children reported lower levels of grief than participants with no children or independent children. The relationship between grief and parental status has not been examined in young adult cancer patients. However, a study of older advanced cancer patients by Nilsson et al. found that participants with dependent children reported less peace, greater worry, and higher levels of panic disorder than participants without dependent children.²⁴ Differences in sample characteristics across the studies may explain these divergent findings. Participants in the Nilsson study were older (M=58.8, SD=12.7) than participants in the current study. In addition, the authors did not report the percentage of participants with independent children. Given the age of the sample, however, it seems likely that a notable proportion of participants had adult children. In the current young adult sample, only 3.8% (n=2) of participants had independent children and 54.7% (n=29) did not have any children. Starting a family is one of the primary developmental tasks of young adulthood but tends to occur at an older age than in previous generations.²⁵ As a result, young adults may not yet have children when diagnosed with cancer and may experience this as an additional loss. This additional loss may explain the higher levels of grief reported in this study by participants without dependent children; that is, those without children may be grieving the loss of ever becoming a parent. Future research is needed to examine these issues in more depth.

This study has implications for clinical assessment and intervention for young adults with advanced cancer. First, this study indicates that assessing grief in response to losses caused by cancer in young adults is important, independent of physical performance status. Even young adults who are functioning well physically may be suffering from grief and associated life disruption. In addition, due to the popular association of grief with bereavement, young adults with cancer may not conceptualize their emotional reaction as grief. As a result, they may benefit from assistance from clinicians in identifying, labeling, and managing their losses and grief reactions.

Second, young adults with advanced cancer may benefit from clinical interventions targeting grief due to cancer-related losses. Research on clinical interventions for grief in bereaved individuals is promising, especially for high levels of grief.^3,6,26–29 In addition, research has shown that young adults with cancer desire mental health counseling^30,31 utilize psychosocial support services more than their older counterparts³² and benefit from counseling interventions.^33,34 These findings suggest that young adults with cancer may be amenable to and utilize mental health interventions for grief. Such interventions may reduce both psychological distress in the form of grief and perceived life disruption due to cancer symptoms in young adults.

Interventions for grief have not yet been evaluated in cancer patients or young adults. Clinical resources for young adults should consider the developmental tasks and cognitive and emotional maturity of this age group. In this vein, interventions that target particular cancer-related developmental losses in a direct and clear manner may be most effective. In addition, young adults may benefit from group-based programming that provides opportunities to meet other young adults with cancer who are experiencing similar losses. Because young adults are generally familiar with social networking over the internet, internet-based programs that include social networking functions may provide a unique and developmentally appropriate way to provide support to young adults with cancer and may reduce feelings of isolation. Further, a recently developed online secondary prevention tool for prolonged grief disorder following bereavement showed large effect sizes in pilot work. The adaptation of this online intervention for grief in young adults with cancer may be a promising intervention for this vulnerable patient population.

This study is limited by a cross-sectional design, small sample size, and convenience sampling. Longitudinal evaluation of grief and life disruption will clarify the causal relationship between these constructs. Second, the measures used in this study were not designed for or previously validated on young adult samples, a limitation characteristic of all psychosocial research in young adult oncology at this time.³² However, it is important to note that the PG-12 used in this study has demonstrated acceptable reliability and validity in bereaved samples^1,2,12,35 and samples of adult cancer patients¹⁰ and demonstrated adequate internal consistency in this sample. In addition, the relationship between the PG-12 and life disruption in this study and with coping strategies in young adults in a previous study³⁶ is preliminary evidence of the validity of this measure for young adults with advanced cancer. Third, the grief measure used in this study does not identify the specific losses experienced by each participant. Participants' grief reactions are likely due to a range of losses, including loss of physical function, loss of roles in work and family, and anticipated loss of life. Future research should examine potential differences in grief based on the nature of the loss. More specifically, qualitative research designs provide an individualized and in-depth perspective that may be particularly well suited to the examination of grief due to various losses. Finally, physical performance status was assessed with a single-item interviewer rating. Although this measure has been validated in cancer patient populations, a more extensive evaluation of performance status using multi-item measures and/or multiple informants may provide a more accurate and nuanced assessment of physical performance status.

The sample for this study was restricted to young adults with advanced disease and included a broad age range that captures multiple developmental transitions, including initial independence from family of origin, attainment of advanced education, career building, marriage, and starting a family. Examination of grief and life disruption across developmental phases within young adulthood and disease trajectory would provide a more targeted examination of these constructs. Such studies would also inform the development of assessments and interventions that meet the unique needs of young adults in various developmental stages and illness contexts. Finally, future research should consider other correlates of grief, including other objective indicators of health (e.g., disease progression, treatment response), psychological well-being (e.g., growth, positive affect), and psychological distress (e.g., depression, anxiety, suicidality).

Conclusion

Grief due to cancer-related losses has not yet been examined in young adults with cancer. In the current study, higher levels of grief due to cancer-related losses were associated with greater perceived life disruption due to cancer symptoms. This relationship remained significant after controlling for an interviewer rating of physical performance status. This result suggests that grief adds a unique burden to the cancer experience in young adults with advanced disease in addition to that caused by physical function. Life disruption in young adults may be due to both physical and psychological factors. Clinical advancements targeting grief may have a twofold benefit for young adults by reducing the psychological distress of grief and the life disruption associated with this distress.

Footnotes

Acknowledgments

This research was supported in part by the following grants to Dr. Prigerson: MH63892 from the National Institute of Mental Health; CA106370 and CA156732 from the National Cancer Institute; the Adolescent and Young Adults with Cancer Closing the Gap Fund; and the Center for Psycho-Oncology and Palliative Care Research, Dana–Farber Cancer Institute.

Author Disclosure Statement

No competing financial interests exist.

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