Correlates of social support in young adults with advanced cancer

Abstract

Objective

This study examined the relationship between perceived social support, quality of life (QoL), and grief in young adults with advanced cancer.

Methods

Seventy-one young adults (20–40 years) with advanced cancer were administered measures of social support, QoL, and grief. Regression analyses examined the relationship between social support and QoL and grief.

Results

Higher levels of total social support were associated with better psychological and existential QoL and less severe grief. Availability of someone to talk to about problems was also associated with better psychological and existential QoL and less severe grief. Tangible support was associated with better psychological and existential QoL. Availability of someone to engage in activities with was only associated with better existential QoL.

Conclusions

These results suggest that enhancing social support may improve psychological well-being in this population. In addition, specific types of social support may be particularly relevant to the psychological well-being of young adults with advanced cancer.

Social support is consistently associated with positive outcomes in adult cancer patients, including better adjustment to cancer, coping, and quality of life (QoL) [1, 2] and lower levels of depression [3]. Similar results emerge in patients with advanced cancer. Higher levels of perceived support are associated with lower levels of depression, anxiety, and mood disturbance in women with metastatic breast cancer [4, 5]. In patients with advanced prostate and gastrointestinal or lung cancer, greater social support is associated with less depression [6, 7].

Similar findings emerge in pediatric and adolescent cancer patients and survivors of childhood cancer [8, 9]. In these populations, greater social support is associated with the development of healthy coping strategies and interpersonal relationships [8, 10], better adjustment to cancer, and less psychological distress [11]. In patients diagnosed with cancer before the age of 21, greater perceived support from family, friends, and healthcare providers was associated with better global mental health and less depression and anxiety [12].

The National Cancer Institute defines the adolescent and young adult (AYA) population as ages 15–39 years and has called for increased focus on these cancer patients [13]. Yet, few studies have examined social support in YAs with cancer despite evidence that social support is an important and primary coping strategy for YA patients [14]. For example, YAs aged 18–40 years in active cancer treatment ranked support from family and friends as their most important supportive care need [15]. In a qualitative study of cancer patients aged 16–22 years, social support was a primary coping strategy and participants reported receiving support from family, friends, healthcare providers, and other cancer patients [14]. In addition, there is some evidence to suggest that social support is associated with positive outcomes in YAs with cancer. In a qualitative study, patients aged 19–30 years reported that caring relationships with others made them feel less alone in the disease experience [16]. These relationships helped patients confront the possibility of death and other losses, provided practical support, promoted normalcy, and made patients feel valued.

The dearth of research on social support in YAs with cancer is notable due to the unique characteristics of social support in young adulthood. Young adulthood is often characterized by shifts in support networks as individuals become more independent from their parents, rely more heavily on their peers, develop romantic relationships, and have children [17]. Cancer can disrupt these processes by increasing reliance on the YA’s family of origin and separating YAs from their healthy peers [18, 19]. In fact, YAs with cancer report feeling isolated from their peers during treatment [19, 20]. This isolation may be exacerbated in YAs with advanced cancer whose transition from curative to palliative care can separate them from YA peers with cancer who continue to receive curative treatment [21].

Further, YAs with cancer may be at increased risk for distress relative to other age groups. Younger age is consistently associated with greater psychological distress in cancer patients [22, 23]. YAs with cancer endorse moderate levels of distress [24] and a significant minority meet the cutoffs for syndromal depression and anxiety [25]. Grief due to cancer-related losses has been examined more recently as a component of psychological distress in cancer patients [26]. Grief is characterized by disbelief, yearning for the lost object, anger, and sadness that is associated with negative psychological outcomes [27, 28]. In older advanced cancer patients, grief due to losses associated with cancer was distinct from depression and was associated with greater wish to die, mental health service use, and negative religious coping [26]. Cancer can cause significant unique losses in YAs, including loss of fertility, relationships, and opportunity to achieve life goals [29]. Therefore, grief may be an especially relevant component of psychological distress in YAs with cancer.

Research on social support and psychological distress in YAs with cancer is limited and consists primarily of qualitative research. The purpose of this study is to examine the relationship between social support and psychological distress in YAs with advanced cancer. We hypothesize that higher levels of social support will be associated with better QoL and less severe grief.

Methods

Participants and procedures

Eligible patients were identified through electronic medical record review by a masters-level research assistant or licensed clinical psychologist. Eligible patients were 20–40 years of age and had a diagnosis of incurable, recurrent, or metastatic cancer (“advanced cancer”). Patients younger than 20 years of age were excluded in order to focus on the YA population within the AYA age range. Patients 40 years of age were included to capture a 20-year age range. Participants were excluded if they were not fluent in English, were too weak to complete the interview, and/or had scores of 5 or greater on the Short Portable Mental Status Questionnaire. Approval for this study was obtained from the Institutional Review Board.

Seventy-one YAs with advanced cancer participated in study interviews during which the interviewer read each question to the participant who provided a verbal response. Each participant completed a single interview; interviews were conducted between April 2010 and September 2011 by a masters-level research assistant or licensed clinical psychologist. All enrolled patients provided written informed consent. Interviews lasted 50–90 min and participants were compensated $25.

Measures

Measures of social support and psychological well-being and distress have not yet been validated in YAs with cancer. The measures utilized in this study were validated in other relevant populations.

Demographic and disease characteristics

Demographic characteristics including age, gender, race, years of education, marital and parental status, income, and insurance status were based on participant self-report. Disease characteristics including cancer diagnosis, stage at diagnosis, date of diagnosis, presence of metastatic disease, and participation in a drug trial were collected from participants’ medical records by a masters-level research assistant or licensed clinical psychologist.

Social support

An abbreviated version of the Interpersonal Support Evaluation List (ISEL) [30] was used to assess perceived availability of social resources in three areas: appraisal or someone to talk to about problems (e.g., “There is at least one person I know whose advice I really trust”; Cronbach’s α =0.50), tangible or material aid (e.g., “It would be difficult for me to find someone who would lend me their car for a few hours”; Cronbach’s a=0.40), and belonging or someone to engage in activity with (e.g., “I don’t often get invited to do things with others”; Cronbach’s a=0.65). The 12 items used in this study were the 4 items in each of these ISEL subscales with the highest inter-item correlations in previous studies [31]. Each item is rated on a four-point Likert scale; higher scores indicate greater social support. A total score (Cronbach’s α=0.74) and subscale scores were calculated. The ISEL has demonstrated adequate reliability in the general population [30] and has been validated in women with metastatic breast cancer [32] and bereaved caregivers [33].

Quality of life

The McGill Quality of Life Questionnaire is a 16-item self-report measure of QoL over the previous 2 days that has been validated in individuals with life-threatening illness [34] and advanced cancer [35, 36]. Participants rate each item using a 0–10 numerical response format. The psychological QoL subscale consists of four items that are summed, with higher scores indicating better QoL (e.g., “Over the past two days, I have been nervous or worried”; Cronbach’s α=0.87). Existential QoL was assessed with a six-item subscale (“Over the past two days, my life has been utterly meaningless and without purpose/very purposeful and meaningful’”; Cronbach’s α=0.83). Higher scores indicate better existential well-being. The physical QoL sub-scale was not included due to the focus of the study on psychological distress. The social support subscale was excluded due to conceptual overlap with the ISEL.

Grief

The Prolonged Grief Disorder Scale (PG-12) was developed as a measure of grief in the context of bereavement [37] and has subsequently been adapted 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?”). The PG-12 has been validated in bereaved individuals [28] and advanced cancer patients [26]. Eleven items are rated on a five-point scale. Responses are summed to create a total grief score (Cronbach’s α=0.76), with higher scores indicating more severe grief.

Performance status

Participants’ performance status was assessed with the Karnofsky Performance Scale, a clinician rating scale from 0 (death) to 100 (normal, no complaints, no evidence of disease) completed by the study interviewer [38].

Statistical analysis

Descriptive analyses were conducted to characterize the sample and measures. The relationships between demographic and disease characteristics and measures of social support, QoL, and grief were examined using t tests and one-way analysis of variance (ANOVA). Linear regression analyses were used to examine the relationship between social support (predictor variable) and QoL and grief (dependent variables). Measures of the dependent variables were individually regressed on the total social support scale and the social support subscales. Demographic and disease characteristics significantly associated with both the predictor and dependent variables were included in the regression model as confounding factors.

Effect sizes from studies with similar samples ranged from 0.20 to 0.48 (Pearson r) [12, 39]. A total sample size of N=71 in this study provides 38 % power to detect an effect size (Pearson r) of 0.20, 93 % power to detect an effect size of 0.39, and 99 % power to detect an effect size of 0.48 with α=0.05.

Results

Oncologists for 196 patients were contacted to request permission to recruit patients for the study; 147 patients were approved for research staff contact. Fifty-four patients did not return study staff calls and 7 patients died prior to study enrollment. Of the remaining 86 patients, 15 declined participation, leaving 71 (83 %) study participants.

Sample characteristics

Table 1 contains the sample characteristics and descriptive statistics for measures of social support, grief, and QoL. The sample was primarily White (92.96 %) and female (70.42 %) with a mean age of 34.00 years (SD=5.57). Approximately half of the sample was married (59.15 %) and had dependent children (40.85 %). Over one third of the sample consisted of breast cancer patients (39.44 %). Other diagnoses included lung, bone, pancreatic, stomach, and esophageal cancer. Half of the sample had metastatic disease (49.30 %). At diagnosis, 23.94 % had stage 3 illness and 26.76 % had stage 4 illness. Mean time since diagnosis was 3.62 years (SD=3.00). All participants had advanced disease at the time of the interview.

Table 1.

Sample characteristics

	Number (percent)
Gender
Female	50 (70.42)
Male	21 (29.57)
Race
White	66 (92.96)
African American	2 (2.82)
Asian American/Pacific Islander/Indian	1 (1.41)
Hispanic	2 (2.82)
Marital status
Married	42 (59.15)
Other	29 (40.85)
Dependent children
Yes	29 (40.85)
No	42 (59.15)
Health insurance
Yes	70 (98.59)
No	1 (1.41)
Income
$11,000–20,999	3 (4.23)
$21,000–30,999	3 (4.23)
$31,000–50,999	6 (8.45)
$51,000–99,999	25 (35.21)
$100,000+	24 (33.80)
Do not know	10 (14.08)
Cancer diagnosis
Breast	28 (39.44)
Brain tumor	9 (12.68)
Leukemia/lymphoma	10 (14.08)
Colon	3 (4.23)
Soft tissue	3 (4.23)
Other	18 (25.35)
Stage
I	4 (5.63)
II	10 (14.08)
III	17 (23.94)
IV	19 (26.76)
Unknown	21 (29.58)
Metastasis
Yes	35 (49.30)
No	36 (50.70)
Drug trial
Yes	20 (28.57)
No	50 (70.43)
	Mean (SD)
Age	34.00 (5.57)
Education	15.79 (2.26)
Years since diagnosis	3.62 (3.00)
Performance status	78.31 (11.21)

Social support and psychological distress differed across sample characteristics. White participants (M=42.66, SD= 4.44) reported higher levels of total social support than non-White participants (M=37.50, SD=4.04). On belonging support, women (M=14.09, SD=2.14) scored higher than men (M=12.95, SD=1.98), White participants (M=13.88, SD=2.09) scored higher than non-White participants (M= 11.50, SD=1.91), married participants (M=14.21, SD= 1.93) reported higher levels than nonmarried participants (M=13.04, SD=2.28), and breast cancer patients (M= 14.59, SD=1.97) scored higher than patients with other cancer diagnoses (M=13.29, SD=2.12). Older age was also associated with higher scores on belonging support. Regarding QoL, participants with metastatic disease (M= 48.09, SD=7.41) scored higher on existential QoL than participants without metastatic disease (M=40.74, SD= 11.76). Better existential QoL was also associated with better performance status and less time since diagnosis. Finally, participants with dependent children (M=21.89, SD=6.12) reported less severe grief than participants without dependent children (M=25.95, SD=7.39). More severe grief was also associated with lower performance status (Table 2).

Table 2.

Relationship between sample characteristics and social support and psychological distress

	Total SS	Appraisal SS	Tangible SS	Belonging SS	Psych QoL	Existential QoL	Grief
Mean (SD)	42.34 (4.56)	14.00 (1.89)	14.61 (1.75)	13.74 (2.15)	25.71 (10.27)	44.42 (10.43)	24.34 (7.15)
t test
	df=62	df=62	df=62	df=62	df=68	df=68	df=66
Gender	−1.05	−1.00	0.75	−2.02* F > M	0.86	−1.80	0.11
Race	−2.26* W > O	−1.10	−1.94	−2.22* W > O	−0.12	−0.76	−0.76
Marital status	−1.41	0.00	−1.01	−2.21* Y > N	−0.75	−1.65	0.95
Dependent children	0.90	0.81	−0.54	1.67	0.28	0.66	−2.37* N > Y
Health insurancea	–	–	–	–	–	–	–
Cancer diagnosis	−1.25	−1.12	0.80	−2.40* B > O	0.67	−1.79	0.89
Metastasis	1.12	2.33* Y > N	−0.51	0.81	1.05	3.13** Y > N	−0.69
Drug trial ANOVA	1.04	−0.09	0.97	1.73	−0.13	−0.23	−0.11
Stage at diagnosis	F(3,39)=0.65	F(3,39)=1.14	F(3,39)=0.07	F(3,39)=0.70	F(3,45)=1.13	F(3,45)=1.38	F(3,43)=0.69
Income	F(4,59)=2.06	F(4,59)=0.97	F(4,59)=1.74	F(4,59)=1.65	F(4,65)=1.13	F(4,65)=1.46	F(4,63)=0.86
Pearson r
Age	0.07	−0.01	−0.16	0.29*	−0.07	−0.02	−0.06
Education	0.04	−0.06	0.11	0.06	0.13	0.10	0.01
Years since diagnosis	0.03	−0.06	0.07	0.06	−0.19	−0.26*	0.06
Performance status	0.05	−0.06	−0.01	0.16	0.12	0.40**	−0.38**

Race: other, White; health insurance: statistics not calculated due to n=1 in the “no insurance” group; income: “do not know” not included in the correlation; cancer diagnosis: other, breast; stage at diagnosis: “unknown” not included in the correlation; income: median value entered for “do not know” SS social support

^*p<0.05;

^**p<0.01

^aHealth insurance status was not examined because 98.6 % of the sample had health insurance coverage

Regression analysis

Tables 3 and 4 contain the Pearson correlation coefficients among the social support measures and among psychological and existential QoL and grief. The subscales of the support measure were significantly correlated with the total social support score (all ps<0.001). Psychological and existential QoL were positively related (r=0.57, p<0.001). Grief was negatively correlated with psychological QoL (r =−0.67, p < 0.001) and existential QoL (r =−0.53, p<.001).

Table 3.

Pearson correlations for predictors

	Predictors
	Appraisal SS	Tangible SS	Belonging SS
Total SS	0.77***	0.79***	0.80***
Appraisal SS	–	0.46***	0.39**
Tangible SS		–	0.45***

SS social support

^**p<0.01;

^***p<0.001

Table 4.

Pearson correlations for outcomes

	Outcomes
	Psychological QoL	Existential QoL
Psychological QoL		0.57***
Grief	−0.67***	−0.53***

^***p<0.001

Table 5 presents the results from the regression analyses predicting psychological and existential QoL and grief. Presence of metastatic disease was controlled for in the model of the relationship between appraisal support and existential QoL. No other demographic and disease characteristics met the criteria for confounding variables.

Table 5.

Adjusted regression analysis

Predictors	Psychological QoL		Existential QoL		Grief
	β	p value	β	p value	β	p value
Total SS	0.43	<0.001	0.43	<0.001	−0.28	0.026
Appraisal SS	0.37	0.002	0.30a	0.019	−0.29	0.019
Tangible SS	0.47	<0.001	0.31	0.014	−0.21	0.096
Belonging SS	0.20	0.11	0.34	0.005	−0.17	0.19

Betas (β) are standardized coefficients SS social support

^aControlling for metastasis

Total social support was associated with better psychological QoL (F(1,62)=13.99, p<0.001; β=0.43, p<0.001) and existential QoL (F(1,62)=13.65, p<0.001; β=0.43, p<0.001) and less severe grief (F(1,61)=5.20, p<0.05; β=−0.28, p<.05). Therefore, consistent with previous research, patients with higher levels of social support reported better psychological well-being across all outcome measures. However, the relationship between social support and psychological well-being differed across the subscales of social support. Appraisal support was positively associated with psychological QoL (F(1,62)=10.00, p<0.01; β=0.37, p<.01) and existential QoL (F(2,61)=5.97, p<0.01; β=0.30, p<0.05), after controlling for metastatic disease. Appraisal support was also negatively associated with grief (F(1,61)=5.79, p<0.05; β=−0.29, p<.05). These results indicate that participants who have someone to talk to about their problems report better psychological well-being across measures. However, tangible support was associated with better psychological QoL (F(1,62)= 17.84, p<0.001; β=0.47, p<0.001) and existential QoL (F(1,62)=6.36, p<0.05; β=0.31, p<0.05) but was not significantly associated with grief. Finally, belonging support was only associated with better existential QoL (F(1,62)=8.31, p<0.01; β=0.34, p<0.01), suggesting that the availability of someone to engage in activity with has a specific and limited relationship with psychological well-being.

Discussion

This study examined the relationship between social support and QoL and grief in YAs with advanced cancer. Total perceived social support was associated with greater psychological well-being across measures, consistent with previous research on adolescent and older adult cancer patients [8, 40]. However, this study also suggests specificity in the relationship between particular types of social support and psychological well-being. Specifically, availability of someone to talk to was associated with higher levels of psychological well-being on all measures, while material aid was associated with better psychological and existential QoL but was not associated with grief. In addition, availability of people with which to engage in activity with was only associated with better existential QoL.

Appraisal support or the availability of someone to talk to about problems was the only type of social support associated with all indicators of psychological well-being in this study. This finding suggests that providing YAs with opportunities to talk with others may have the most global impact on their psychological health. A cancer diagnosis is often a YA’s first experience with illness and the healthcare system and can disrupt a YA’s plans, expectations, and worldview. This disruption may be particularly intense in YAs with advanced cancer who may have undergone long treatment courses and have poorer prognoses. In addition, YAs with advanced cancer may experience significant losses such as loss of fertility, life goals, and friendships. Solutions to these problems are often unavailable or nonexistent. However, talking with others about these issues and the associated emotions may help YAs understand their experience and develop strategies for managing their distress [18].

Tangible support was also associated with better psychological and existential QoL. Advanced cancer can reduce individuals’ ability to engage in self-care and activities of daily living, thereby increasing reliance on others to meet those needs. Availability of resources to meet practical needs may improve YAs’ QoL. However, tangible support was not associated with grief in this study. Reduced ability to complete activities of daily living could be experienced as a loss by YAs, generating additional grief. While tangible support can address these practical needs, it does not necessarily eliminate the losses due to cancer or the associated grief.

Finally, perceived availability of people to engage in activities with was only associated with existential QoL in this study. The perception that others are available to spend time with may make life seem more meaningful and worthwhile to YAs. However, given the importance of spending time with peers in young adulthood, the relationship of belonging support to only a single measure of psychological well-being is surprising and may reflect disease characteristics. YAs with advanced cancer may be unable, due to disease and treatment effects, to participate in many social activities. In addition, the salience of practical needs and difficult emotional experiences may reduce the relevance of social activities to YAs’ psychological well-being. For this reason, YAs with advanced cancer may benefit more from appraisal and tangible support than from availability of social activities.

Clinical implications

These results have significant implications for improving the psychological well-being of YAs with advanced cancer through enhancement of social support. First, YAs may benefit from opportunities to discuss their problems with others. Multiple avenues exist for providing this type of support. Research suggests that YAs with cancer want access to mental health counseling services [41]. Such services provide YAs with the opportunity to discuss their experiences with professional mental health clinicians who can apply validated psychotherapy interventions, normalize emotions, teach coping strategies, and provide support.

However, maintaining normalcy is also important to YAs and the stigma associated with psychotherapy may reduce YAs’ willingness to access these services. An evaluation of perceived needs in YA cancer patients and survivors found that YAs ranked “opportunities to meet other YA cancer patients and/or survivors” as their greatest supportive care need [42]. Programs that provide YAs with opportunities to talk with each other may promote relationship development and provide YAs with the opportunity to share with and learn from others.

Second, providing YAs with resources to meet material needs such as transportation to the doctor, maintenance of their home, and child care may be important for promoting well-being. Due to limited experience with illness, many YAs may not anticipate their needs or have the knowledge or skills to identify available resources. YAs may also have difficulty asking for help from others due to their desire to maintain autonomy and independence [18, 19]. Assessment and normalization of their needs and assistance in identifying ways to meet them may significantly reduce YAs’ psychological distress.

Limitations and future directions

This study is limited by a cross-sectional design; directionality cannot be determined from these results. Social support resources may reduce disease-related stressors and help YAs process cancer-related losses, thereby increasing psychological well-being. Conversely, YAs experiencing less psychological distress may be more effective at obtaining social support and/or are easier for others to support. Longitudinal evaluation of social support and psychological well-being will clarify the causal relationships between these constructs.

In addition, the sample size for this study was small and participants were primarily White and female, limiting the generalizability of the results to the greater YA population. However, relative to a study of YAs with a comparable age range [24], the current sample was similar in race, marital status, and dependent children, indicating that the current sample is generally reflective of this population. In addition, many studies restrict their samples to female cancer patients [3, 24]. Inclusion of males in this study (29.57 %) creates a more representative sample regarding gender than in other studies. However, additional research with larger and more diverse samples is needed to clarify the interaction between demographic characteristics and social support on psychological well-being.

The sample for this study included a broad age range that captures multiple developmental transitions. Research on social support in adolescent cancer survivors indicates that peer support is more important for older adolescents [43] and that social support needs may change over the course of treatment [44]. Therefore, examination of social support across disease trajectory and developmental phases within young adulthood may be important.

To minimize participant burden, a shortened version of the ISEL was used rather than a longer, potentially more comprehensive, measure. In addition, the measures used in this study were not designed for or validated on YA samples, a limitation characteristic of all research in YA psychosocial oncology at this time [20]. Finally, the subscales of the social support measure demonstrated low internal consistency (Cronbach’s α=0.40–0.65) in this small sample which may reduce the replicability of these results. Future research will benefit from the development and validation of measures in YA samples and inclusion of objective measures of social support, such as the number of people in a YA’s support network.

Social support is important and beneficial to cancer patients across ages [8, 40]. In this study, social support was associated with better psychological and existential QoL and less severe grief in YAs with advanced cancer. In addition, the relationship between social support and psychological well-being differed across types of social support. These findings suggest that promoting social support may improve psychological well-being in this population. In particular, providing YAs with a context in which to discuss their experiences and meeting their practical needs may be the most effective support services.