Abstract
Purpose:
The aim of this study was to elucidate the prevalence of unmet supportive care needs in Hispanic/Latino cancer survivors and examine the association between unmet needs and patient-provider communication, satisfaction with cancer care, and cancer-specific symptom burden.
Methods:
Hispanics/Latinos diagnosed with breast, prostate, or colorectal cancer within 15 months of treatment completion (N=288) completed questionnaires as part of an NCI-funded project.
Results:
Hispanic/Latino cancer survivors reported greater unmet needs compared to previously published norms in primarily non-Hispanic/Latino white samples. Across the three cancer types, the two most common unmet needs were in the psychological domain: fear of metastasis (32.6%) and concern for close others (31.3%). However, unmet needs varied by cancer type. Factors associated with greater unmet needs included more recent cancer diagnosis (OR .98 [.96-.99]), younger age (OR .96-.97 [.93-.99]), female gender (OR 2.53–3.75 [1.53–7.36]), and being single (OR 1.82 [1.11–2.97]). Breast cancer survivors reported greater unmet needs than both prostate and colorectal cancer survivors (OR 2.33–5.86 [1.27–14.01]). Adjusting for sociodemographic and medical covariates, unmet needs were associated with lower patient-provider communication self-efficacy (B= −.18– −.22, p’s < .01) and satisfaction with cancer care (B= −2.05– −3.81, p’s < .05), and greater breast (B= −4.18– −8.30, p’s < .01) and prostate (B= −6.01– −8.13, p’s < .01) cancer-specific symptom burden.
Conclusions:
Findings document unmet supportive care needs in Hispanic/Latino cancer survivors and suggest that reducing unmet needs in Hispanic/Latino cancer survivors may improve not only satisfaction with care, but also health-related quality of life.
Keywords: Hispanic, Latino, survivorship, supportive care, unmet needs, patient-provider communication, satisfaction with care
Unmet supportive care needs are defined as concerns or needs that cancer survivors report have not been adequately addressed or met by the healthcare team [1–6], usually assessed across psychological (PSY), health system and information (HSI), patient care and support (PCS), physical and daily living (PDL), and sexuality (SXN) domains [1, 7–9]. Importantly, unmet supportive care needs in cancer survivors are associated with worse symptom burden, lower physical functioning, and greater emotional distress [4–6, 10, 11]. Furthermore, unmet needs are associated with lower satisfaction with cancer care [10] and lower patient ratings of patient-provider communication [12], which can lead to poor adherence to treatment [13–17] and, in turn, increases in healthcare costs, medical visits, and risk of disease progression and mortality [18–21].
Previous studies demonstrate that factors associated with greater unmet needs among non-Hispanic/Latino white cancer survivors include younger age, female gender, less time since diagnosis, and more advanced disease [6, 22–24]. Despite findings suggesting that Hispanics/Latinos (referred to as Hispanics hereafter) and other racial/ethnic minorities may not be amenable to psychosocial/supportive cancer care services due to cultural norms and stigma associated with mental health services [25], previous studies [26–28] demonstrate that Hispanic cancer survivors endorse greater unmet supportive care needs than non-Hispanic whites. In fact, one study [28] found that Hispanic cancer survivors endorse greater unmet supportive care needs (e.g., information regarding their disease, treatment side effects, pain management; support managing stress, depressed mood, worries about close others) than African Americans, even when adjusting for covariates such as education, time since diagnosis, and treatment status. However, these studies have been limited by small subsamples of Hispanics (n’s = 40–48) [26, 28] or the use of author-created asessments of unmet needs [27].
Quality of life disparities are well-documented among Hispanic cancer survivors [29–32], however Hispanics remain underrepresented in cancer survivorship research and to our knowledge no previous research has characterized unmet supportive care needs using a well-validated measure in a relatively large, diverse sample of Hispanic cancer survivors in the United States. Therefore, the primary aim of this study was to assess and characterize unmet supportive care needs in Hispanics (N = 288) diagnosed and treated for the three most common non-skin cancers in this population: breast, prostate, and colorectal cancer [33]. More specifically, we aimed to elucidate the prevalence of unmet supportive care needs in order to facilitate comparison with previously published studies in non-Hispanic white cancer survivors and identify demographic, sociocultural, and medical factors associated with greater unmet supportive care needs. In light of previous research documenting the relationship of unmet supportive care needs with patient-provider communication [12], satisfaction with cancer care [10], and symptom burden [4, 5], we also examined the association between unmet supportive care needs with patient-provider communication self-efficacy, satisfaction with cancer care, and cancer-specific symptom burden.
Methods
Participants
The current sample (N = 288) was derived from baseline data of a National Cancer Institute (NCI) funded project that aimed to reduce symptom burden and improve adherence to treatment recommendations in Hispanic cancer survivors. Eligibility criteria included a diagnosis of breast, colorectal, or prostate cancer; completion of primary cancer treatment within the past 15 months; self-identification as Hispanic/Latino; and verbal fluency in Spanish or English. Individuals with evidence of metastatic disease, current severe mental illness (e.g., psychosis), active suicidal ideation, and/or substance dependence within the past year were excluded.
Procedures
Potential participants were identified via medical chart review and recruited from major tertiary medical centers in Chicago and San Antonio. Upon recruitment, participants provided informed consent and completed a comprehensive psychosocial baseline in-person assessment (approximately 90 minutes) with trained bilingual interviewers. Participants had the option of completing the baseline assessment in English or Spanish based on their language preferences and were compensated $25 for participation, as well as parking and other transportation reimbursements. All measures used in this study have been previously translated and validated in both English and Spanish speaking samples with good to excellent psychometric properties. All procedures performed were approved by the Institutional Review Board (IRB) of each institution and were in accordance with the ethical standards of the 1964 Helsinki declaration and its later amendments. Informed consent was obtained from all individual participants included in the study. Data were collected between February 2012 and January 2015.
Measures
Electronic health records were reviewed to capture: diagnosis, stage of disease (TNM staging system), treatment type, months since diagnosis, and months since treatment completion. The 34-item short form Supportive Care Needs Survey (SCNS) [2, 7] was used to assess unmet needs across five domains: psychological (PSY), health system and information (HSI), patient care and support (PCS), physical and daily living (PDL), and sexuality (SXN). For each item, participants indicated their level of need over the past month [1 (not applicable), 2 (satisfied), 3 (low need), 4 (moderate need), 5 (high need)]. Following standard scoring procedures for this measure [3, 8, 9, 34], each domain was dichotomized to categorize participants as having unmet needs if they endorsed at least one ‘moderate’ to ‘high’ unmet need in that domain. Per scoring guidelines, standardized sum scores were also computed to facilitate comparison with previous samples [7–9]. The 10-item Perceived Efficacy in Patient-Physician Interactions (PEPPI) [35] assessed self-efficacy (i.e., confidence) in patient-provider communication. The 18-item Patient Satisfaction with Cancer Care Scale [36] assessed satisfaction with cancer care. Symptom burden subscales for the FACT-B [37] (10 items) and FACT-P [38] (12 items) were administered to assess cancer-specific symptom burden in breast (n = 128) and prostate (n = 90) cancer survivors, respectively. Lower scores reflect worse symptom burden. The symptom burden subscale for the FACT-C [39] (7 items) was not analyzed because of low internal consistency (α < .70), possibly due to fewer items in this subscale and the smaller subsample of colorectal cancer survivors (n = 70). The 12-item Short Acculturation Scale for Hispanics (SASH) [40] assessed US acculturation.
Statistical Analyses
All analyses were conducted in SPSS 23.0 (IBM). Descriptive analyses examined the percentage of individuals that endorsed supportive care needs as a ‘moderate’ or ‘high’ unmet need, both across the sample and by each cancer type, in order to identify the ten most prevalent unmet needs. Descriptive analyses also examined the percentage of individuals endorsing at least one ‘moderate’ or ‘high’ unmet need in each of the five supportive care needs domains.
Correlates of unmet supportive care needs in each domain were identified using logistic regression analyses that regressed each supportive care need domain (dichotomized: 0 = no or low need, 1 = at least one moderate to high unmet need, per standard scoring procedures for this measure [3, 8, 9, 34]) on demographic (i.e., gender, age, income, marital status, education), sociocultural (i.e., nativity, acculturation, language), and medical variables (i.e., time since diagnosis, cancer stage, cancer type, and treatment type). The relationship between unmet supportive care needs with patient-provider communication self-efficacy, satisfaction with cancer care, and cancer-specific symptom burden was examined using linear regression analyses. Patient-provider communication self-efficacy, satisfaction with cancer care, and cancer-specific symptom burden were separately regressed on each supportive care need domain (dichotomized: 0 = no or low need, 1 = at least one moderate to high unmet need) adjusting for the identified demographic, sociocultural, and medical correlates of each supportive care need domain (cancer type was only controlled for in analyses examining patient-provider communication self-efficacy and satisfaction with cancer care since symptom burden was specific to each cancer type [within group]).
Results
Tables 1 and 2 display the sociodemographic and medical characteristics of the sample, respectively. Participants were on average 56 years old (M = 56.05, SD = 10.20), married or cohabitating (61.5%), and reported a high school education or less (65.6%) and a combined household income less than $50,000 (68.4%) with approximately half of the sample reporting a combined household income less than $25,000 (48.9%). Most participants were foreign born (59.4%) and were either monolingual Spanish-speaking (54.2%) or English-Spanish bilingual (26.0%). Participants were on average diagnosed 12 months previously (M = 11.98, SD = 5.53) with breast (44.4%), colorectal (24.3%), and prostate (31.3%) cancer. The majority of participants were diagnosed with stage 0 (2.1%), I (20.1%), and II (35.4%) cancer and one-quarter of participants were diagnosed with Stage III (25.0%). Approximately one-third received chemotherapy (31.3%) and half received radiation (56.6%) and hormone therapy (46.9%).
Table 1.
Sociodemographic Characteristics
| Combined | Breast Cancer | Prostate Cancer | Colorectal Cancer | |||||
|---|---|---|---|---|---|---|---|---|
| (N = 288) | (n = 128) | (n = 90) | (n = 70) | |||||
| Age, mean (SD) | 56.05 | (10.20) | 51.44 | (9.13) | 63.07 | (8.23) | 55.03 | (9.30) |
| Years living in US, mean (SD) | 28.65 | (14.48) | 24.64 | (14.21) | 32.89 | (14.52) | 29.68 | (12.97) |
| Gender, % (n) | ||||||||
| Female | 53.8 | (155) | 100 | (128) | 0 | (0) | 38.6 | (27) |
| Male | 46.2 | (133) | 0 | (0) | 100 | (90) | 61.4 | (43) |
| Race, % (n) | ||||||||
| White | 88.2 | (254) | 86.7 | (111) | 86.7 | (78) | 92.9 | (65) |
| Black | .3 | (1) | 0 | (0) | 1.1 | (1) | 0 | (0) |
| Native American | .3 | (1) | 0 | (0) | 1.1 | (1) | 0 | (0) |
| Other | 8.7 | (25) | 10.2 | (13) | 9.0 | (9) | 4.3 | (3) |
| Unknown | 2.1 | (6) | 3.1 | (4) | 0 | (0) | 2.8 | (2) |
| Missing | .3 | 1 | 0 | (0) | 1.1 | (1) | 0 | (0) |
| Ethnicity, % (n) | ||||||||
| Hispanic/Latino | 100 | (288) | 100 | (128) | 100 | (90) | 100 | (70) |
| Country/Territory of Origin, % (n) | ||||||||
| Mexico | 80.6 | (232) | 78.1 | (100) | 84.4 | (76) | 80.0 | (56) |
| Puerto Rico | 5.2 | (15) | 4.7 | (6) | 6.7 | (6) | 4.3 | (3) |
| Central America | 1.7 | (5) | 3.1 | (4) | 1.1 | (1) | 0 | (0) |
| South America | 6.2 | (18) | 6.3 | (8) | 6.7 | (6) | 5.7 | (4) |
| Caribbean | 1.0 | (3) | 1.5 | (2) | 0 | (0) | 1.4 | (1) |
| Other | 1.0 | (3) | 1.5 | (2) | 1.1 | (1) | 0 | (0) |
| Unknown | .7 | (2) | 0 | (0) | 0 | (0) | 2.9 | (2) |
| Missing | 3.5 | (10) | 4.7 | (6) | 0 | (0) | 5.7 | (4) |
| Language, % (n) | ||||||||
| English monolingual | 17.0 | (49) | 15.6 | (20) | 15.6 | (14) | 21.4 | (15) |
| Spanish monolingual | 54.2 | (156) | 49.2 | (63) | 66.7 | (60) | 47.1 | (33) |
| English-Spanish bilingual | 26.0 | (75) | 30.5 | (39) | 17.8 | (16) | 28.6 | (20) |
| Missing | 2.8 | (8) | 4.7 | (6) | 0 | (0) | 2.9 | (2) |
| Nativity, % (n) | ||||||||
| US Born | 37.8 | (109) | 36.7 | (47) | 33.3 | (30) | 45.7 | (32) |
| Foreign Born | 59.4 | (171) | 58.6 | (75) | 66.7 | (60) | 51.4 | (36) |
| Missing | 2.8 | (8) | 4.7 | (6) | 0 | (0) | 2.9 | (2) |
| Immigrant Generation, % (n) | ||||||||
| 1st generation | 56.6 | (163) | 52.3 | (67) | 67.8 | (61) | 50.0 | (35) |
| 2nd generation | 12.8 | (37) | 12.5 | (16) | 12.2 | (11) | 14.2 | (10) |
| 3rd generation | 10.8 | (31) | 14.0 | (18) | 5.5 | (5) | 11.4 | (8) |
| 4th generation | 6.6 | (19) | 4.6 | (6) | 7.7 | (7) | 8.5 | (6) |
| 5th generation | 6.9 | (20) | 7.8 | (10) | 5.5 | (5) | 7.1 | (5) |
| Not Applicable | 2.1 | (6) | 2.3 | (3) | 0 | (0) | 4.2 | (3) |
| Unknown | .7 | (2) | 0.8 | (1) | 0 | (0) | 1.4 | (1) |
| Missing | 3.4 | (10) | 5.4 | (7) | 1.1 | (1) | 2.9 | (2) |
| Household Income, % (n) | ||||||||
| Less than $11,9999 | 22.2 | (64) | 21.8 | (28) | 18.8 | (17) | 27.1 | (19) |
| Between $12,000 and $24,999 | 26.7 | (77) | 26.5 | (34) | 30.0 | (27) | 22.8 | (16) |
| Between $25,000 and $49,999 | 19.5 | (56) | 20.3 | (26) | 18.8 | (17) | 18.5 | (13) |
| Between $50,000 and $99,999 | 9.8 | (28) | 6.2 | (8) | 13.3 | (12) | 11.4 | (8) |
| More than $100,000 | 5.6 | (16) | 7.8 | (10) | 4.4 | (4) | 2.9 | (2) |
| Unknown | 12.5 | (36) | 10.1 | (13) | 14.4 | (13) | 14.2 | (10) |
| Missing | 3.8 | (11) | 7.0 | (9) | 0 | (0) | 2.9 | (2) |
| Educational History, % (n) | ||||||||
| Less than high school | 39.2 | (113) | 30.4 | (39) | 44.4 | (40) | 48.5 | (34) |
| High school or equivalency (GED) | 26.4 | (76) | 25.7 | (33) | 25.5 | (23) | 28.5 | (20) |
| Associate’s degree | 6.3 | (18) | 7.0 | (9) | 4.4 | (4) | 7.1 | (5) |
| Bachelor’s degree | 8.0 | (23) | 8.6 | (11) | 11.1 | (10) | 2.9 | (2) |
| Master’s degree | 2.1 | (6) | 3.1 | (4) | 2.2 | (2) | 0 | (0) |
| Doctoral degree (PhD, DPhil) | 1.0 | (3) | .8 | (1) | 1.1 | (1) | 1.4 | (1) |
| Professional degree (MD, JD, DDS) | .7 | (2) | .8 | (1) | 0 | (0) | 1.4 | (1) |
| Other | 3.1 | (9) | 4.6 | (6) | 2.2 | (2) | 1.4 | (1) |
| Missing | 13.2 | (38) | 18.7 | (24) | 8.8 | (8) | 8.5 | (6) |
| Relationship Status, % (n) | ||||||||
| Single | 11.5 | (33) | 10.9 | (14) | 8.8 | (8) | 15.7 | (11) |
| Married or Living with Partner | 61.5 | (177) | 56.2 | (72) | 76.6 | (69) | 51.4 | (36) |
| Dating | .3 | (1) | 0 | (0) | 0 | (0) | 1.4 | (1) |
| Separated | 5.6 | (16) | 7.8 | (10) | 3.3 | (3) | 4.2 | (3) |
| Divorced | 13.5 | (39) | 14.8 | (19) | 7.7 | (7) | 18.5 | (13) |
| Widowed | 4.9 | (14) | 5.4 | (7) | 3.3 | (3) | 5.7 | (4) |
| Missing | 2.8 | (8) | 4.6 | (6) | 0 | (0) | 2.9 | (2) |
| Parental Status, % (n) | ||||||||
| Yes | 87.8 | (253) | 8.6 | (11) | 7.7 | (7) | 12.8 | (9) |
| No | 9.4 | (27) | 86.7 | (111) | 92.2 | (83) | 84.2 | (59) |
| Missing | 2.8 | (8) | 4.6 | (6) | 0 | (0) | 2.9 | (2) |
Table 2.
Medical & Cancer Characteristics
| Combined | Breast Cancer | Prostate Cancer | Colorectal Cancer | |||||
|---|---|---|---|---|---|---|---|---|
| (N = 288) | (n = 128) | (n = 90) | (n = 70) | |||||
| Months since Diagnosis, mean (SD) | 11.98 | (5.53) | 11.16 | (5.04) | 11.78 | (5.45) | 13.76 | (6.17) |
| Months since Treatment, mean (SD) | 5.00 | (4.38) | 3.92 | (3.68) | 5.17 | (4.57) | 6.64 | (4.78) |
| Cancer Type, % (n) | ||||||||
| Prostate | 31.3 | (90) | 0 | (0) | 100 | (90) | 0 | (0) |
| Breast | 44.4 | (128) | 100 | (128) | 0 | (0) | 0 | (0) |
| Colorectal | 24.3 | (70) | 0 | (0) | 0 | (0) | 100 | (70) |
| Cancer Stage, % (n) | ||||||||
| 0 | 2.1 | (6) | 4.7 | (6) | 0 | (0) | 0 | (0) |
| I | 20.1 | (58) | 33.5 | (43) | 10.0 | (9) | 8.5 | (6) |
| II | 35.4 | (102) | 35.1 | (45) | 42.2 | (38) | 27.1 | (19) |
| III | 25.0 | (72) | 14.0 | (18) | 22.2 | (20) | 48.5 | (34) |
| Missing | 17.3 | (50) | 12.5 | (16) | 25.5 | (23) | 15.7 | (11) |
| Treatment Type, % (n) | ||||||||
| Neoadjuvant Chemotherapy | 16.0 | (46) | 16.4 | (21) | 0 | (0) | 35.7 | (25) |
| Adjuvant Chemotherapy | 31.3 | (90) | 39.8 | (51) | 1.1 | (1) | 54.3 | (38) |
| Radiation Therapy | 56.6 | (163) | 63.3 | (81) | 62.2 | (56) | 37.1 | (26) |
| Hormone Therapy | 46.9 | (135) | 75.8 | (97) | 29.7 | (38) | 0 | (0) |
| Immunotherapy | 7.6 | (22) | 16.4 | (21) | 1.1 | (1) | 0 | (0) |
| Study Site, % (n) | ||||||||
| San Antonio | 59.4 | (171) | 57.8 | (74) | 55.6 | (50) | 67.1 | (47) |
| Chicago | 40.6 | (117) | 42.2 | (54) | 44.4 | (40) | 32.9 | (23) |
Table 3 displays the top ten most prevalent ‘moderate’ to ‘high’ unmet supportive care needs, across the sample and by cancer type. Across the three cancer types, the two most common unmet needs were in the PSY domain: fear of metastasis (32.6%) and concern for close others (31.3%). Table 4 displays standardized sum scores for each supportive care need domain and the percentage of individuals endorsing at least one ‘moderate’ or ‘high’ unmet need in each supportive care need domain, across the sample and by cancer type. Across the three cancer types, the top two domains with at least one ‘moderate’ or ‘high’ unmet need were the PSY and HSI domains (49.3% and 36.8%, respectively).
Table 3.
Most Prevalent ‘Moderate’ to ‘High’ Unmet Supportive Care Needs
| Overall |
Prostate Cancer |
Breast Cancer |
Colorectal Cancer |
||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Rank | Item | % | Domain | Rank | Item | % | Domain | Rank | Item | % | Domain | Rank | Item | % | Domain |
| 1 | Fears about the cancer spreading | 32.6 | PSY | 1 | Changes in your sexual relationships | 32.6 | SXN | 1 | Fears about the cancer spreading | 43.8 | PSY | 1 | Concerns about the worries of those close to you | 31.0 | PSY |
| 2 | Concerns about the worries of those close to you | 31.3 | PSY | 2 | Changes in sexual feelings | 28.1 | SXN | 2 | Uncertainty about the future | 36.7 | PSY | 1 | Not being able to do the things you used to do | 31.0 | PDL |
| 3 | Not being able to do the things you used to do | 29.2 | PDL | 3 | To be given information re. sexual relationships | 27.0 | SXN | 3 | Not being able to do the things you used to do | 35.2 | PDL | 3 | Fears about the cancer spreading | 26.8 | PSY |
| 4 | Uncertainty about the future | 26.7 | PSY | 4 | Fears about the cancer spreading | 21.3 | PSY | 4 | Worry that the results of treatment are beyond your control | 32.8 | PSY | 4 | Uncertainty about the future | 25.4 | PSY |
| 5 | Changes in your sexual relationships | 26.0 | SXN | 5 | Anxiety | 20.2 | PSY | 4 | Lack of energy and tiredness | 32.8 | PDL | 5 | Lack of energy and tiredness | 22.5 | PDL |
| 6 | Changes in sexual feelings | 24.7 | SXN | 6 | Feeling down or depressed | 19.1 | PSY | 6 | Feelings of sadness | 31.3 | PSY | 6 | Feelings of sadness | 21.1 | PSY |
| 6 | Lack of energy and tiredness | 24.7 | PDL | 6 | Not being able to do the things you used to do | 19.1 | PDL | 7 | Being informed about cancer which is under control or diminishing (i.e. remission) | 30.5 | HSI | 6 | Feeling down or depressed | 21.1 | PSY |
| 8 | Feelings of sadness | 24.3 | PSY | 8 | Feelings of sadness | 16.9 | PSY | 8 | Learning to feel in control of your situation | 29.7 | PSY | 6 | Anxiety | 21.1 | PSY |
| 9 | Feeling down or depressed | 23.6 | PSY | 9 | Concerns about the worries of those close to you | 14.6 | PSY | 9 | Being adequately informed re. the benefits/side-effects of treatments before you choosing | 28.1 | HSI | 9 | Worry that the results of treatment are beyond your control | 19.7 | PSY |
| 10 | Anxiety | 23.3 | PSY | 9 | Lack of energy and tiredness | 14.6 | PDL | 9 | Feeling down or depressed | 28.1 | PSY | 9 | Changes in your sexual relationships | 19.7 | SXN |
| 9 | Pain | 19.7 | PDL | ||||||||||||
Table 4.
Supportive Care Need Domains: Prevalence of Unmet Needs & Standardized Sum Scores
| Overall | Prostate Cancer | Breast Cancer | Colorectal Cancer | |||||
|---|---|---|---|---|---|---|---|---|
| Supportive Care Need Domain | % Unmet Need | M (SD) | % Unmet Need | M (SD) | % Unmet Need | M (SD) | % Unmet Need | M (SD) |
| Psychological (PSY) | 49.3 | 32.05 (27.41) | 33.7 | 22.00 (23.80) | 62.5 | 41.63 (26.42) | 45.1 | 28.22 (28.23) |
| Health System & Information (HSI) | 36.8 | 28.46 (26.00) | 22.5 | 18.08 (21.69) | 50.0 | 39.24 (26.00) | 31.0 | 22.92 (24.16) |
| Patient Care & Support (PCS) | 19.4 | 21.95 (24.03) | 7.9 | 11.24 (18.48) | 31.3 | 33.34 (25.21) | 12.7 | 15.94 (19.54) |
| Physical & Daily Living (PDL) | 19.4 | 21.95 (24.22) | 7.9 | 11.24 (18.48) | 31.3 | 33.26 (25.63) | 12.7 | 15.94 (19.54) |
| Sexuality (SXN) | 29.2 | 31.26 (32.47) | 36.0 | 36.65 (32.45) | 27.3 | 31.13 (33.11) | 23.9 | 24.51 (30.50) |
Note: ‘Unmet need’ defined as the endorsement of at least one ‘moderate’ or ‘high’ unmet need in corresponding domain.
Correlates of Unmet Supportive Care Needs.
Table 5 displays identified correlates of unmet supportive care need domains. Younger age was associated with greater unmet needs across all domains (OR .96-.97, 95% CI [.93-.99], p’s < .01) except SXN (p > .10). Women endorsed greater unmet needs than men across all supportive care needs domains (OR 2.53–3.75, 95% CI [1.53–7.36], p’s < .001) except SXN (p > .10). Single survivors (i.e., single, divorced, widowed) endorsed greater unmet PSY supportive care needs than married survivors (OR 1.82 95% CI [1.11–2.97], p < .05). Survivors with at least a high school education endorsed marginally greater unmet HSI needs than those with less than a high school education (OR 1.58, 95% CI [.94 – 2.66], p < .10). Greater US acculturation was associated with greater unmet needs in the PCS and PDL domains (OR 1.46–1.47, 95% CI [1.10 – 1.96], p’s < .01) and marginally greater unmet SXN needs (OR 1.25, 95% CI [.97 – 1.62], p < .10). English monolingual survivors endorsed greater unmet needs in the PCS , PDL, and SXN domains (OR 2.31–2.32, 95% CI [1.10–4.86], p’s < .05) than Spanish monolingual survivors (bilingual survivors did not differ from either English or Spanish monolingual survivors). Greater time since diagnosis was associated with lower unmet PSY needs (OR .98, 95% CI [.96-.99], p < .05). Breast cancer survivors endorsed greater unmet needs across all domains (OR 2.33–5.93 95% CI [1.27–14.01], p’s < .01 than both prostate and colorectal cancer survivors except SXN (prostate and colorectal cancer survivors did not differ). Unmet needs were not associated with income, nativity, cancer stage, or treatment type.
Table 5.
Correlates of Unmet Supportive Care Need Domains.
| Unmet Supportive Care Need Domain | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Psychological Needs (PSY) |
Health System & Information Needs (HSI) |
Patient Care & Support Needs (PCS) | Physical & Daily Living Needs (PDL) | Sexuality Needs (SXN) |
||||||
| B (SE) | OR (95% CI) | B (SE) | OR (95% CI) | B (SE) | OR (95% CI) | B (SE) | OR (95% CI) | B (SE) | OR (95% CI) | |
| Demographic Variables | ||||||||||
| Age (years) | −.04 (.01)** | .96 (.94 - .99) | −.05 (.01)** | .97 (.93 - .98) | −.04 (.02)** | .96 (.93 - .99) | −.04 (.02)** | .96 (.93 - .99) | −.01 (.01) | .99 (.96 - 1.01) |
| Gender | ||||||||||
| Female vs. Male (ref) | 1.10 (.25)*** | 3.01 (1.85 - 4.90) | .93 (.26)*** | 2.53 (1.53 -4.19) | 1.32 (.34)*** | 3.75 (1.91 - 7.36) | 1.31 (.34)*** | 3.72 (1.90 - 7.29) | −.21 (.26) | .81 (.49 - 1.36) |
| Marital Status | ||||||||||
| Not Married vs. Married (ref) | .60 (.25)* | 1.82 (1.11 - 2.97) | .06 (.26) | 1.06 (.64 - 1.75) | .04 (.31) | 1.04 (.57 - 1.92 | .03 (.31) | 1.03 (.56 - 1.89) | −.38 (.28) | .68 (.39 -1.18) |
| Education | ||||||||||
| At least H.S. vs. less than H.S. (ref) | .35 (.25) | 1.43 (.87 - 2.34) | .46 (.27)† | 1.58 (.94 - 2.66) | .54 (.34) | 1.72 (.89 - 3.31) | .55 (.34) | 1.73 (.90 - 3.34) | .23 (.28) | 1.26 (.73 - 2.18) |
| Sociocultural Variables | ||||||||||
| Acculturation | .15 (.12) | 1.17 (.93 - 1.47) | .12 (.12) | 1.13 (.89 - 1.43) | .39 (.15)** | 1.47 (1.11 - 1.96) | .38 (.15)** | 1.46 (1.10 - 1.95) | .23 (.13)† | 1.25 (.97 - 1.62) |
| Language | ||||||||||
| English vs. Spanish monolingual (ref) | .45 (.33) | 1.57 (.82 - 3.00) | .46 (.33) | 1.58 (.83 - 3.02) | .84 (.38)* | 2.31 (1.10 - 4.86) | .84 (.38)* | 2.31 (1.10 - 4.86) | .78 (.34)* | 2.32 (1.11 - 4.28) |
| Bilingual vs. Spanish monolingual (ref) | .13 (.28) | 1.14 (.66 - 1.98) | .03 (.29) | 1.03 (.58 - 1.82) | .39 (.36) | 1.47 (.73 - 2.96) | .37 (.36) | 1.45 (.72 - 2.91) | .25 (.31) | 1.29 (.70 - 2.38) |
| Bilingual vs. English monolingual (ref) | .32 (.37) | 1.37 (.66 - 2.85) | .43 (.38) | 1.54 (.74 - 3.21) | .45 (.42) | 1.57 (.69 - 3.58) | .47 (.42) | 1.60 (.70 - 3.64) | .53 (.39) | 1.69 (.80 - 3.60) |
| Medical Variables | ||||||||||
| Time since Diagnosis (months) | −.03 (.01)* | .98 (.96 - .99) | −.01 (.01) | .99 (.98 - 1.01) | −.02 (.02) | .98 (.95 - 1.01) | −.02 (.02) | .98 (.95 - 1.01) | −.01 (.01) | 1.01 (1.00 - 1.03) |
| Cancer Type | ||||||||||
| Breast vs. Prostate Cancer (ref) | 1.31 (.29)*** | 3.71 (2.09– 6.60) | 1.31 (.31)*** | 3.69 (2.01- 6.76) | 1.78 (.44)*** | 5.93 (2.51-14.01) | 1.77 (.44)*** | 5.86 (2.48-13.83) | −.32 (.30) | .72 (.40 – 1.30) |
| Breast vs. Colorectal Cancer (ref) | .85 (.31)** | 2.33 (1.27– 4.28) | .92 (.32)** | 2.51 (1.34 - 4.70) | 1.19 (.41)** | 3.28 (1.48 - 7.28) | 1.18 (.41)** | 3.24 (1.46 - 7.18) | .31 (.35) | 1.36 (.68 – 2.70) |
| Prostate vs. Colorectal Cancer (ref) | −.47 (.33) | .63 (.33 – 1.20) | −.38 (.36) | .68 (.34 - 1.39) | −.59 (.53) | .55 (.20 - 1.57) | −.59 (.53) | .55 (.20 - 1.57) | .63 (.36) | 1.88 (.93- 3.81) |
p < .10,
p < .05,
p < .01,
p < .001.
Patient-Provider Communication Self-Efficacy, Satisfaction with Cancer Care, Cancer-Specific Symptom Burden.
Table 6 displays the association of unmet supportive care need domains with satisfaction with cancer care and cancer-specific symptom burden when adjusting for the demographic, sociocultural, and medical correlates of each supportive care need domain that were identified above. Unmet PSY needs were associated with lower patient-provider communication self-efficacy (B = −.18, p < .01) and greater symptom burden in prostate (B = −6.01, p < .01) and breast (B = −8.30, p < .001) cancer survivors. Unmet HSI needs were associated with lower patient-provider communication self-efficacy (B = −.22, p < .01) and satisfaction with cancer care (B = −3.81, p < .01) and greater symptom burden in prostate (B = −6.75, p < .01) and breast (B = −6.36, p < .001) cancer survivors. Unmet PCS needs were associated with marginally lower patient-provider communication self-efficacy (B = −.15, p < .10), lower satisfaction with cancer care (B = −3.57, p < .05), and greater symptom burden in breast cancer survivors (B = −4.20, p < .01). Unmet PDL needs were associated with lower satisfaction with cancer care (B = −3.65, p < .05) and greater symptom burden in breast cancer survivors (B = −4.18, p < .01). Unmet SXN needs were associated with marginally lower satisfaction with cancer care (B = −2.05, p < .10) and greater symptom burden in prostate (B = −8.13, p < .001) and breast (B = −6.24, p < .001) cancer survivors.
Table 6.
Association of Unmet Supportive Care Needs with Patient-Provider Self-Efficacy, Satisfaction with Cancer Care, and Cancer-Specific Symptom Burden.
| Patient-Provider Communication Self-Efficacy | Satisfaction with Cancer Care | Prostate Cancer Symptom Burden |
Breast Cancer Symptom Burden |
|||||
|---|---|---|---|---|---|---|---|---|
| Unmet Supportive Care Needs | B (SE) | (95% CI) | B (SE) | (95% CI) | B (SE) | (95% CI) | B (SE) | (95% CI) |
| Psychological (PSY) | −.18 (.07)** | (−.32 –−.05) | −1.66 (1.23) | (−4.08 – .75) | −6.01 (2.02)** | (−10.03–−1.98) | −8.30 (1.33)*** | (−10.95 –−5.66) |
| Health System & Information (HSI) | −.22 (.07)** | (−.36–−.08) | −3.81 (1.18)** | (−6.14 - - 1.48) | −6.75 (2.12)** | (−10.96 – −2.54) | −6.36 (1.39)*** | (−9.12 – −3.60) |
| Patient Care & Support (PCS) | −.15 (.09)† | (−.32– .03) | -3.57 (1.47)* | (−6.46 – −.68) | −5.80 (3.54) | (−12.84 – 1.24) | −4.20 (1.45)** | (−7.07 - −1.32) |
| Physical & Daily Living (PDL) | −.14 (.09) | (−.31 – .03) | −3.65 (1.46)* | (−6.53 – −.77) | −5.80 (3.54) | (−12.84 – 1.24) | −4.18 (1.44)** | (−1.33 – −7.04) |
| Sexuality (SXN) | −.08 (.08) | (−.23 – .07) | −2.05 (1.24)† | (−4.49 – .39) | −8.13 (1.67)*** | (−11.44 –−4.81) | −6.24 (1.54)*** | (−9.29 – −3.20) |
Note. Analyses controlled for sociodemographic and medical covariates associated with each supportive care need domain.
p < .10,
p < .05,
p < .01,
p < .001.
Conclusions
The primary aim of this paper was to document the prevalence of unmet supportive care needs in Hispanic cancer survivors and examine the association between unmet needs and patient-provider communication self-efficacy, satisfaction with cancer care, and cancer-specific symptom burden. Unmet supportive care needs were assessed in five domains: psychological (PSY), health system and information (HSI), patient care and support (PCS), physical and daily living (PDL), and sexuality (SXN). Our sample was primarily foreign-born, Spanish-speaking, had a high school education or less and an annual household income below $50,000. Unmet supportive needs in the current sample were elevated compared to previously published norms in primarily non-Hispanic white samples (see [7–9] for standardized sum scores; see [3, 9, 34] for rates of most prevalent unmet needs). Similar to findings in previous studies [9, 34], the two most common unmet needs across the three cancer types were in the PSY domain with approximately one-third of survivors reporting fear of metastasis and concern for close others. Across the three cancer types, six of the ten most common unmet needs were in the PSY domain and the top two domains with at least one ‘moderate’ or ‘high’ unmet need were the PSY and HSI domains. Findings of the current study underline the importance of assessing and addressing supportive care needs among Hispanic cancer survivors. In particular, PSY needs, such as fear of metastasis and recurrence, distress, depressed mood, and difficulty managing social support, should be closely monitored as these were the most highly endorsed unmet needs across the three cancer types.
Unmet supportive care needs also varied by cancer type. Importantly, breast cancer survivors reported greater unmet needs across all domains except SXN than both prostate and colorectal cancer survivors and may be at particular risk for untoward outcomes, even when compared to other Hispanic cancer survivors. This is consistent with our previous research demonstrating that Hispanic breast cancer survivors report lower quality of life and overall self-efficacy compared to Hispanic prostate and colorectal cancer survivors [41]. Although the top two most common unmet needs among both breast and colorectal cancer survivors were in the PSY and PDL domains, the two most common unmet needs among prostate cancer survivors were in the SXN domain with approximately one-third of survivors reporting changes in sexual relationships and sexual feelings. Furthermore, the top two domains with at least one ‘moderate’ or ‘high’ unmet need among both breast and colorectal cancer survivors were in the PSY and HSI domains, whereas as they were the SXN and PSY domains for prostate cancer survivors. These findings are consistent with previous research examining unmet supportive care needs in non-Hispanic prostate cancer survivors [24] and an extensive literature documenting persistent, bothersome sexual dysfunction in men diagnosed and treated for prostate cancer [42–44], and suggest that Hispanic prostate cancer survivors also desire increased attention and support around SXN needs.
Similar to previous research examining unmet supportive care needs in non-Hispanic cancer survivors [6, 22, 23], the current study demonstrates that recent cancer diagnosis, younger age, female gender, and being single are risk factors associated with greater unmet needs among Hispanic cancer survivors. Hispanic cancer survivors who were more acculturated to the United States and highly educated also reported greater unmet needs, suggesting that they may feel more empowered or comfortable endorsing domains in which they desire more support and resources. This pattern of results is consistent with previous research demonstrating greater unmet needs in more highly-educated cancer survivors [11], including cancer survivors diagnosed and treated in Mexico [23] and Puerto Rico [45]. Although a relationship between cancer stage and unmet needs was not observed in the current study, it is difficult to interpret this finding given our exclusion of survivors diagnosed with stage IV disease and oversampling of survivors with stage 0 to II cancer (which significantly truncates variance in cancer stage). Our findings highlight the importance of considering sociodemographic and medical characteristics like age, gender, acculturation, and recency of cancer diagnosis when working with Hispanics in cancer care settings as these factors may help identify individuals who are more likely to experience elevations in unmet supportive care needs and experience untoward outcomes.
The current study demonstrates that unmet supportive care needs were associated with lower patient-provider communication self-efficacy and satisfaction with cancer care as well as greater breast and prostate cancer-specific symptom burden, even when adjusting for sociodemographic and medical covariates. These findings are consistent with previous research that documents the relationship between unmet needs with lower satisfaction with cancer care [10] and greater symptom burden [6] in non-Hispanic cancer survivors. Given that lower satisfaction with patient-provicer communication and cancer care is associated with worse adherence to treatment [13–17], which, in turn, can lead to increases healthcare costs, medical visits, and risk of disease progression and mortality [18–21], unmet needs among Hispanic cancer survivors may have important consequences for both quality of life and healthcare utilization. However, given the cross-sectional design of this study, it is important to note more research is needed to determine whether unmet supportive care needs prospectively predict changes in patient-provider communication self-efficacy, satisfaction with cancer care, and cancer-specific symptom burden, or vice versa. Nevertheless, it is possible that Hispanic cancer survivors who perceive that their supportive care needs are inadequately addressed may experience lower confidence in their ability to communicate effectively with their provider, less satisfaction with their overall cancer care, and greater cancer-specific burden. Therefore, reducing unmet needs may be a viable target for future intervention efforts aimed at improving outcomes, such as patient-provider communication, satisfaction with care, and symptom burden, among Hispanic cancer survivors.
Strengths & Limitations
The current study has several strengths, including the first comprehensive assessment of unmet supportive care needs using a well-validated measure in a relatively large, unique sample of U.S. Hispanic cancer survivors diagnosed with the three most common non-skin cancers in this population. The primary limitation of the current study is its cross-sectional design. It is important to note that causal inference cannot be concluded, and lower patient-provider communication self-efficacy and satisfaction with cancer care or worse symptom burden may drive greater unmet supportive care needs among Hispanic cancer survivors. An important future direction is the use of longitudinal designs to examine how these relationships unfold across time and establish temporal precedence. Furthermore, future studies should consider the inclusion of Hispanic cancer survivors with primary sites of disease beyond the breast, prostate, and colon/rectum and diagnoses that span the full spectrum of disease severity (i.e., stages 0 to IV).
Acknowledgments
Research supported by a National Cancer Institute grant (U54CA153511) awarded to Ramirez and Penedo and funding for the Robert H. Lurie Comprehensive Cancer Center at Northwestern University (P30CA060553) and the Mays Cancer Center at UT Health San Antonio (P30CA054174). Moreno and Fox were supported through a National Cancer Institute training grant (T32CA193193).
Footnotes
The authors have no conflicts of interest to declare.
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