Pain, Symptom Distress, and Pain Barriers by Age among Patients with Cancer receiving Hospice Care: Comparison of Baseline Data

Abstract

Objectives:

Age group differences have been reported for pain and symptom presentations in outpatient and inpatient oncology settings, but it is unknown if these differences occur in hospice. We examined whether there were differences in pain, symptom distress, pain barriers, and comorbidities among three age groups (20–64 years, 65–84 years, and 85+) of hospice patients with cancer.

Materials and Methods:

Participants were recruited from two hospices. Half were women; 49% White and 34% Black. 42% were 20–64 y, 43% 65–84 y, and 15% 85+ y. We analyzed baseline data for 230 hospice patients with cancer (enrolled 2014–2016, mean age 68.2 ±14.0, 20–100 years) from a stepped-wedge randomized controlled trial. Measures were the Average pain intensity (API, 0–10: current, least and worst pain intensity during the past 24 hours), Symptom Distress Scale (SDS, 13–65), Barriers Questionnaire-13 (BQ-13, 0–5), and comorbid conditions. Descriptive, bivariate association, and multiple regression analyses were performed.

Results:

Mean API scores differed (p<.001) among the three age groups (5.6±2.0 [20–64 years], 4.7±2.0 [65–84 years], and 4.4±1.8 [85+], as did the mean SDS scores (36.1±7.3, 33.5±8.1, and 31.6±6.6, p=.004). BQ-13 mean scores (2.6±0.9, 2.7±0.8, and 2.5±0.7) and comorbidities were not significantly different across age groups. In multiple regression analyses, age-related differences in API and SDS remained significant after adjusting for gender, race, cancer, palliative performance score, and comorbidities. Comorbidities were positively associated with SDS (p=.046) but not with API (p=.64) in the regression model.

Conclusion:

Older hospice patients with cancer reported less pain and symptoms than younger patients, but all groups reported similar barriers to pain management. These findings suggest the need for age- and race-sensitive interventions to reduce pain and symptom distress levels at life’s end.

Introduction

Age group differences have been reported for pain and symptom presentations among patients receiving care in outpatient and inpatient oncology settings [1–3]. But it is unknown whether these differences occur in hospice settings. Cancer risk and comorbid conditions are age-dependent [4, 5], and it is challenging to manage cancer symptoms, including pain within the context of concomitant comorbidities, especially for older adults [6]. Hospice care eliminates some of the system-level barriers to pain and symptom management, such as the cost of medications, with multidisciplinary care at home [7], which could mitigate age group differences observed in other cancer care settings. The purpose of this study was to examine pain intensity, symptom distress, pain barriers, and comorbid conditions for differences among three age groups of patients (20–64 years, 65–84 years, and 85+ years) with cancer receiving hospice care.

Pain is one of the most frequently reported symptoms in patients with cancer [8, 9]. Almost one of every two patients with cancer pain was undertreated [10], and pain is experienced differently by age [11], race/ethnicity [1], and gender [12]. Prior research suggests that barriers to pain management and comorbidities can influence a patient’s adherence to analgesics and ability to achieve adequate pain management, positioning them at risk for inadequate pain control and more symptom distress [13–15]. Although there is conflicting information on the pattern of pain prevalence based on age groups [16–18], older adult patients with cancer receiving palliative care are at high risk for suboptimal pain relief as cancer and treatment toxicities progress [19]. The inadequate pain relief may be due to multiple barriers such as misconceptions about pain management and medication side effects [20], comorbid conditions, and demographic and clinical characteristics that may impact treatment choices and outcomes [21]. It is not surprising that pain and other symptoms are worse when an advanced stage of cancer is combined with age-associated physiologic changes in responses to treatment [22], and patients receiving hospice care report high symptom distress [23].

Hospice care of patients with cancer focuses explicitly on managing pain and symptoms [24–26], but the age effects have not been examined thoroughly in this care setting. It is also unknown if pain, symptom distress, comorbid conditions, and pain barriers differ by age among subgroups of adults with cancer receiving hospice care. The specific aim of this study was to compare adults (20–64 years of age), older adults (65–84), and the oldest-old adults (85+) with cancer in hospice for differences in pain intensity, symptom distress, pain barriers, and comorbid medical conditions. We also examined selected demographic, functional status, and clinical variables as predictors of pain intensity, symptom distress, and pain treatment.

Materials and Methods

Design.

Using a cross-sectional design, baseline data from a 5-step, stepped-wedge randomized controlled trial (RCT: 2013–2017; NCT02026115) were analyzed. The goal of the original stepped-wedge RCT was to investigate the effects of the PAINRelieveIt^® intervention using Internet-based technology on patient outcomes associated with pain management compared to the usual care in patients receiving home-level care from two hospice and palliative care programs. Detailed information about the RCT study design can be found elsewhere [27, 28]. The Institutional Review Boards at the University of Illinois at Chicago (UIC, 2013–0986) and the University of Florida (IRB201500453) approved the study. Data were collected from March 2014 through September 2016. All participants gave written informed consent.

Setting and Sample.

The study was conducted in the homes of patients receiving care from two Chicago-area not-for-profit hospice programs. The inclusion criteria for this study were patients who (a) were admitted to home care level of hospice service; (b) had a diagnosis of cancer; (c) had experienced the worst pain of 3 or higher on a 0 to 10 scale during the past 24 hours; (d) spoke, read, and wrote English or Spanish; (e) were ≥18 years of age; and (f) had a Palliative Performance Scale (PPS) score of ≥30%. Patients were excluded if they (a) had cognitive or physical impairments making it impossible to communicate or complete study procedures as assessed by the hospice nurse and the study research specialist (RS), or (b) did not answer questions about comorbidity information or cancer type.

For the RCT, a total of 3,533 patients were screened for eligibility, 3,271 were excluded for reasons indicated in Figure 1, and 262 patients enrolled (43% of those eligible). For the analysis reported here, 29 patients had missing comorbidity data and 3 had missing cancer data and were excluded (Figure 1). Baseline data were obtained prior to disclosure of randomization from a total of 230 (88% of enrolled) patients whose data were available for the analyses reported.

Figure 1.

Enrollment flow diagram

Procedure.

The hospice admission nurse informed all newly admitted patients about the study and obtained their permission for study contact. The hospice research specialist (RS) screened all cancer patients admitted to hospice, informed eligible patients about the study, and scheduled a home visit as soon as patients were willing to participate after admission to hospice care. The RS explained the study purpose and obtained written informed consent to participate. The RS oriented patients to the tablet computer and assisted with data collection as needed. For this study, only the baseline data were used for analysis. Other study procedures are reported elsewhere [27].

Instrument.

PAINReportIt^® [29] is an electronic version of the McGill Pain Questionnaire (1970 version), a well-validated instrument used for more than 45 years [30]. PAINReportIt^® displays each question on a single screen. For this study, the key outcome variables measured using the PAINReportIt^® were the Pain Intensity Number Scale (PINS) [31], Symptom Distress Scale (SDS) [32, 33], and Barriers Questionnaire 13 (BQ-13) [20]. As process variables, we documented the time participants spent completing the baseline questionnaires on the tablet and their prior computer experience to identify potential age-related issues using the PAINReportIt^®.

Outcome variables.

The PINS provided ratio level data [34]. The patient designated the pain intensity as a number between 0 and 10, where 0 is “no pain” and 10 is “pain as bad as it could be.” It allows the patient to indicate the level of the current and the least/worst pain intensity during the past 24 hours. Concurrent validity (r = .80–.89) [31] and construct validity [35, 36] have been reported. PINS scores separated by 2 weeks were correlated at a moderate level, r(45) = .41, p < .005 [20]. The three PINS pain intensity values (the current and the least and worst levels of pain during the past 24 hours) were averaged to create the average pain intensity (API). The API measured at outpatient setting was validated as a sensitive predictor of subsequent 1-year acute care utilization for pain care [37].

The 13-item SDS (min-max: 13–65) measures 11 symptoms associated with cancer [32, 33], including 2 questions about nausea, 2 questions about pain, and 1 question each on symptoms of appetite, insomnia, fatigue, bowel pattern, concentration, appearance, breathing, outlook, and cough. Response to each question is scored on a five-point Likert-type scale that ranges from 1 (normal/no distress or almost never/mild) to 5 (extensive stress/severe/terrified or almost continually/unbearable). Higher scores thus indicate more symptom distress. An item scored higher than 3 indicates serious distress [32]. Participants’ responses to items were summed. A score ranging from 25 to 32 indicates moderate distress, while 33 or higher indicates severe distress [38]. The Cronbach’s alpha was 0.76 demonstrating the validity and reliability of the SDS for the cancer hospice population [23].

The BQ-13 evaluates patients’ beliefs about cancer pain and its management. It includes 13 items representing seven barriers to pain management and six side effects on a 6-point Likert scale (0: do not agree; 5: agree very much) [20]. The BQ-13 items [20] were reduced from the original 27-item tool [39]. The BQ-13 showed construct validity and acceptable reliability. Specifically, Cronbach alphas were 0.83 (baseline) and 0.86 (study end), and the 4-week test-rest reliability was .69 in a control group [20]. In the current study, Cronbach alpha was a lower but acceptable 0.70. In prior cancer studies, patients with cancer completed the BQ-13 in 5 minutes or less using a touch-screen pen-tablet computer [40, 41].

Predictor variables.

Age was categorized into three groups, 20–64 years, 65–84 years, and 85+ years, for comparison of the outcome variables between the age groups. Demographic and pain medication data were captured via PAINReportIt^® including gender, age, race/ethnicity, type of cancer, prior computer experience, comorbidities, and analgesics such as step 3 opioids (e.g., morphine. hydromorphone, and fentanyl) per the well-known World Health Organization’s analgesic ladder [42].

Comorbid conditions were based on self-reported problems in a head-to-toe review of 13 body systems (e.g., eyes, nose, throat, heart, kidneys) instead of by diagnosis. Participants selected options and entered text to report their comorbid conditions (e.g., “I have high blood pressure,” “I have excessive swelling in my hands and feet”). Responses to comorbid conditions were exported to an Excel file and reviewed independently by two researchers for accuracy of categorization and duplication. Discrepancies were resolved by consensus agreement to determine the total number of comorbid conditions for each participant. This total number of comorbid conditions was used in the analyses.

The PPS, a modified Karnofsky Performance Scale to measure physical performance in palliative care, is a valid and reliable 11-point scale ranging from 0% (dead) to 100% (fully functional) [43, 44]. The PPS is valid in predicting survival in minority-serving hospice and palliative care [45].

Statistical Analysis.

Data stored on a secure server were extracted from the structured query language (SQL) database. Descriptive statistics for demographic data, comorbid conditions, and outcome measures included mean, range, standard deviation (reported as ±), and frequency with percentage. ANOVA was used for comparison among age groups. To adjust for multiple testing, we utilized the Benjamini-Hochberg correction, which seeks to control false discovery rate and is scalable to the number of tests performed [46]. Linear regression analysis was used to examine the age-related differences in API and symptom distress, adjusting for gender, race, cancer, PPS, and comorbidities. Binary logistic regression analysis was performed to examine the association of Step 3 opioid prescription with age and API. Statistical significance was set at p<.05.

Results

Demographics.

Demographics for the 230 participants are shown in Table 1. The mean age was 68.2 ± 14.0 years and ranged between 20 and 100 years. The majority of the participants were 65 years of age or older (58%), non-Hispanic (81%), had a high-school education or less (60%), and had income less than $30,000 (69%). The overall sample was almost evenly split between male (50%) and female (50%), between white (49%) and racial minority (51%), and between those married/partnered (46%) and those single/widowed/separated/divorced (54%). Of all the demographic variables, only marital status differed significantly across the three age groups (p=.003), with older adults more likely to be widowed.

Table 1.

Demographic Characteristics (N=230)

	Variables	All (N=230)	Age			p-value
			20–64 (n=97)	65–84 (n=98)	85+ (n=35)
Gender	Female	114 (50%)	43 (44%)	48 (49%)	23 (66%)	.19
	Male	116 (50%)	54 (56%)	50 (51%)	12 (34%)
Race	Minority*	117 (51%)	57 (59%)	49 (50%)	11 (31%)	.06
	White	113 (49%)	40 (41%)	49 (50%)	24 (69%)
Ethnicity	Hispanic	43 (19%)	17 (18%)	19 (19%)	7 (20%)	.92
	Non-Hispanic	187 (81%)	80 (82%)	79 (81%)	28 (80%)
Education (5 missing)	High school or lower	135 (60%)	53 (56%)	58 (60%)	24 (71%)	.41
	Some college or higher	90 (40%)	42 (44%)	38 (40%)	10 (29%)
Marital Status	Married/Partnered	106 (46%)	48 (49%)	50 (51%)	8 (23%)	.003
	Single	60 (26%)	40 (41%)	18 (18%)	2 (6%)
	Widowed	51 (22%)	3 (3%)	25 (26%)	23 (66%)
	Divorced/separated	13 (6%)	6 (6%)	5 (5%)	2 (6%)
Income (70 missing)	$10,000 or less	58 (36%)	29 (37%)	20 (32%)	9 (47%)	.41
	$11,000–$20,000	30 (19%)	13 (17%)	12 (19%)	5 (26%)
	$21,000–$30,000	22 (14%)	12 (15%)	9 (14%)	1 (5%)
	$31,000–$40,000	16 (10%)	6 (8%)	8 (13%)	2 (11%)
	$41,000–$50,000	12 (8%)	8 (10%)	4 (6%)	0 (0%)
	$50,000<	22 (14%)	10 (13%)	10 (16%)	2 (11%)

^*Minority included 34% Black, 2% mixed race, 1% Asian, and 13% Other

Computer usage.

Prior computer use decreased with age. Only 44% of the patients younger than 65, 63% of those 65–84, and 74% of those 85+ had never used a computer (p<.001). However, the time needed for the participants to complete the baseline data entry using tablets did not differ significantly across age groups (p=.38), with a mean completion time of 61 ± 26, 57 ± 26, and 64 ± 34 minutes for the three groups, respectively.

Cancer characteristics.

All participants had stage 4 cancer. The most common sites of cancer were upper gastrointestinal (GI) cancer (22%), including cancers in the stomach, pancreas, and liver; respiratory (20%); urinary (16%), including cancers in the prostate, bladder, and kidney; and lower GI (colorectal) (14%) (Table 2). The difference in cancer sites across age groups was not statistically significant in this sample (p=.18).

Table 2.

Type of Cancers among Participants across Age Groups (N=230)

Cancer Type	Cancer, Specific	Total	20–64 yrs	65–84 yrs	85+ yrs
Breast	Breast	21 (9%)	13 (13%)	5 (5%)	3 (9%)
Digestive-Upper GI		51 (22%)	21 (22%)	18 (18%)	12 (34%)
	Liver	19 (8%)	9 (9%)	8 (8%)	2 (6%)
	Pancreas	21 (9%)	8 (8%)	7 (7%)	6 (17%)
	Stomach	11 (5%)	4 (4%)	3 (3%)	4 (11%)
Digestive-Lower GI	Colorectal	33 (14%)	15 (15%)	16 (16%)	2 (6%)
Reproductive		15 (7%)	7 (7%)	7 (7%)	1 (3%)
	Cervix	8 (3%)	4 (4%)	3 (3%)	1 (3%)
	Ovary	5 (2%)	3 (3%)	2 (2%)	0 (0%)
	Uterus	2 (1%)	0 (0%)	2 (2%)	0 (0%)
Urinary		36 (16%)	8 (8%)	19 (19%)	9 (26%)
	Prostate	22 (10%)	5 (5%)	13 (13%)	4 (11%)
	Bladder	5 (2%)	2 (2%)	2 (2%)	1 (3%)
	Kidney	9 (4%)	1 (1%)	4 (4%)	4 (11%)
Respiratory	Lung	47 (20%)	21 (22%)	20 (20%)	6 (17%)
Other		27 (12%)	12 (12%)	13 (13%)	2 (6%)

The association between the cancer category and the age group was not statistically significant in this sample (p=.18).

Comorbidities.

Cancer at the primary site was not counted as a comorbid condition. The participants most frequently reported a cardiac condition (37%) and stomach problems (31%) followed by breathing problems (28%), chronic pain (23%), and diabetes (22%). The average number of patient-reported comorbid conditions was 2.4 ± 2.6 (range: 0 −14) overall and 2.3 ± 2.4, 2.8 ± 2.9, and 1.6 ± 1.7, across the age groups (p=.20), respectively.

Palliative Performance Scale (PPS).

The mean PPS scores were less than 50 for all age groups. The mean PPS scores differed significantly (p=.004) among the three age groups 48.7 ± 10.2 (20–64 years), 45.9 ± 11.2 (65–84 years), and 42.3 ± 7.7 (85+ years).

Pain.

Current pain intensity scores were not significantly different by age groups (p=.20) (Table 3). Least pain (p=.004) and worst pain (p<.001) in the past 24 hours, however, differed significantly by age groups, with the 65–84 and 85+ groups having lower mean scores than the 20–64 group (Figure 2). Similarly, the API differed significantly among the three age groups (p<.001). Descriptive statistics of these pain intensity scores overall and by age group appear in Table 3.

Table 3.

Mean (SD) for PPS, Comorbid Conditions, Pain, Symptom Distress, and Barriers by Age

Variables	All (N=230)	Age Groups			p-value
		20–64 (n=97)	65–84 (n=98)	85+ (n=35)
PPS	46.5 (10.5)	48.7 (10.2)	45.9 (11.2)	42.3 (7.7)	.004
# comorbidities	2.4 (2.6)	2.3 (2.4)	2.8 (2.9)	1.6 (1.7)	.20
API	5.0 (2.0)	5.6 (2.0)	4.7 (2.0)	4.4 (1.8)	<.001
Current	4.8 (2.7)	5.2 (2.9)	4.6 (2.6)	4.3 (2.2)	.20
Worst in 24 hours	7.1 (2.4)	7.9 (2.0)	6.8 (2.5)	6.0 (2.4)	<.001
Least in 24 hours	3.2 (2.4)	3.9 (2.5)	2.8 (2.3)	2.8 (2.3)	.004
SDS	34.3 (7.8)	36.1 (7.3)	33.5 (8.1)	31.6 (6.6)	.004
Nausea Frequency	1.8 (1.1)	2.0 (1.1)	1.7 (1.1)	1.7 (0.8)	.19
Nausea Intensity	1.8 (1.0)	2.0 (1.1)	1.7 (1.0)	1.6 (1.0)	.08
Appetite	2.9 (1.2)	2.8 (1.1)	2.8 (1.2)	3.0 (1.2)	.90
Insomnia	2.5 (1.3)	2.8 (1.3)	2.4 (1.3)	2.1 (1.3)	.004
Pain Frequency	3.9 (1.0)	4.0 (1.0)	3.8 (1.0)	3.7 (1.0)	.20
Pain Intensity	3.1 (1.1)	3.4 (1.1)	3.0 (1.1)	2.6 (0.8)	.002
Fatigue	3.7 (1.1)	3.7 (1.2)	3.7 (1.1)	3.6 (0.9)	.95
Bowel	3.0 (1.5)	3.2 (1.5)	2.9 (1.6)	2.7 (1.5)	.28
Concentration	2.2 (1.2)	2.3 (1.2)	2.2 (1.3)	1.9 (1)	.45
Appearance	3.0 (1.4)	3.1 (1.3)	2.9 (1.4)	2.7 (1.2)	.20
Breathing	2.0 (1.0)	2.0 (1.1)	2.0 (1.0)	1.9 (0.8)	.90
Outlook	2.6 (1.4)	2.8 (1.4)	2.4 (1.4)	2.1 (1.1)	.03
Cough	2.0 (1.1)	2.0 (1.1)	1.9 (1.1)	1.9 (1.1)	.95
BQ-13	2.6 (0.9)	2.6 (0.9)	2.7 (0.8)	2.5 (0.7)	.90
Pain Barrier (7 items)	2.6 (1.0)	2.6 (1.0)	2.7 (1.0)	2.5 (0.9)	.95
Side Effects (6 items)	2.6 (1.2)	2.6 (1.3)	2.7 (1.1)	2.4 (1.0)	.87

PPS: Palliative Performance Scale; API: Average Pain Intensity; SDS: Symptom Distress Scale; BQ-13: Barrier Questionnaire-13

Figure 2.

Mean pain scores across age groups

Symptom distress.

Symptom distress scores significantly differed by age groups (p=.004), with the oldest group (85+) having the lowest mean scores and moderate distress level (31.6±6.6). In contrast, the younger age group (20–64) reported severe mean symptom distress (36.1±7.3) scores (Table 3). Analyses of the individual symptoms revealed that the age group differences were driven mainly by the difference in insomnia, pain intensity, and outlook, with older adult patients performing better in each (Table 3).

Barriers related to pain.

Mean barrier scores of different age groups were similar (ranging from 2.5 to 2.7, p=.90). Mean subscale scores (seven items indicating pain barriers and six items of barriers reporting side effects) were also similar among the three age groups (Table 3).

Pain treatment.

Younger patients received more pain treatment in this sample. Eighty-six percent of those 18–64, 60% of those 65–84, and 43% of those 85+ received step 3 opioid prescriptions (p<.001). Younger patients were also more likely to take more than one pain medication, with 70% of those 18–64, 57% of those 65–84, and 46% of those 85+ taking more than one pain medication (p=.03).

Regression analyses.

Multiple regression analysis revealed that race, age, and PPS were significantly associated with API (Table 4). Minority patients reported higher API (p=.02) than Whites. Older age and better PPS were associated with lower API (p=.004 and .04, respectively) in our sample of hospice patients who were 20 to 100 years old. Cancer system, gender, and the number of comorbidities were not significantly associated with API in this sample. Older age was also associated with lower symptom distress (p=.002). A higher number of comorbidities was associated with higher symptom distress (p=.046) (Table 4). Likelihood of step 3 opioid prescription decreased with age (p<.001) and increased with API (p<.001) (Table 4).

Table 4.

Regression Analyses

Outcomes	Predictor	Category	Estimate (95% CI)	p-value
API	Gender (ref = Female)	Male	−0.04 (−0.63, 0.54)	.88
	Race (ref = White)	Minority	0.78 (0.24, 1.32)	.02
	Cancer System (ref = Breast)	Upper GI	0.64 (−0.42, 1.70)	.37
		Lower GI	1.06 (−0.04, 2.17)	.12
		Reproductive	−0.35 (−1.67, 0.98)	.66
		Urinary	0.59 (−0.60, 1.78)	.44
		Respiratory	1.02 (−0.03, 2.07)	.12
		Other	0.67 (−0.48, 1.82)	.37
	Age (10 years)		−0.35 (−0.54, −0.15)	.004
	PPS score (10 points)		−0.32 (−0.58, −0.07)	.04
	# Comorbidities		0.03 (−0.07, 0.13)	.64
SDS	Gender (ref=Female)	Male	−0.50 (−2.80, 1.79)	.67
	Race (ref=White)	Minority	−1.62 (−3.74, 0.50)	.26
	Cancer System (ref = Breast)	Upper GI	1.86 (−2.35, 6.06)	.51
		Lower GI	3.21 (−1.17, 7.59)	.26
		Reproductive	1.99 (−3.16, 7.13)	.54
		Urinary	1.36 (−3.35, 6.08)	.62
		Respiratory	3.13 (−1.03, 7.28)	.26
		Other	2.75 (−1.77, 7.27)	.35
	Age (10 years)		−1.44 (−2.22, −0.66)	.002
	PPS score (10 points)		−0.80 (−1.79, 0.20)	.26
	# Comorbidities		0.51 (0.12, 0.90)	.046
Step 3 Opioid	Age (10 years)		−0.10 (−0.14, −0.06)	<.001
	API		0.05 (0.02, 0.08)	<.001

Note: API: Average Pain Intensity; ref: reference category; GI: gastrointestinal;

PPS: Palliative Performance Scale; SDS: Symptom Distress Scale;

Step 3 Opioid: e.g., morphine, hydromorphone, fentanyl; CI: confidence interval

Discussion

Age group differences in pain (API, worst and least pain intensity), symptom distress (insomnia, pain, and outlook), performance status, and medications among hospice patients with cancer demonstrated that the youngest group had the highest mean scores (worst pain and symptom, but best performance) and most pain treatments. However, there were no apparent age group differences for pain-related barriers. In multiple regression models, younger age, minority race, lower performance status were associated with API; younger age and more comorbidities were associated with symptom distress. Younger age and higher API were associated with step 3 opioid prescription, suggesting older adults were less likely to receive step 3 opioid prescription for managing pain. These findings are intriguing in the clinical care context, where system-level barriers, such as the cost of medications for pain and symptom management and multidisciplinary care at home, are eliminated by the hospice payment policies [7].

Our findings showed that younger patients had higher performance scores than older groups, reported more pain and distress associated with insomnia, pain, and outlook, and had more pain treatment. These findings are similar to Mohile et al.’s study [2] of 903 cancer patients receiving radiotherapy in which younger patients reported significantly worse pain than older adults even though older patients reported higher physical limitations (e.g., walking) [2].

Higher pain intensity was associated with race but not gender. Findings from our sample that was balanced by gender suggest that the cancer pain gender disparity was not evident as it was many years ago [47]. Minority patients reported higher pain intensity than White patients, which is consistent with previous cancer studies in home care or hospice settings [48, 49] and chronic pain in primary care settings [50]. Racial differences in pain intensity ratings associate with chronic stress [51], induced often by long-term exposure to suboptimal environments with resultant epigenetic changes related to pain perception [52].

In our study, lower pain and symptom distress were associated with older age. Reasons for these findings are unclear, but perhaps other person-oriented factors (patient, family, and/or provider) not measured in this study could explain the age-related differences in pain intensity and symptom distress observed among the hospice patients with cancer. Other study findings [2, 53, 54] were similar to our results. Previous findings indicated that the oldest-old patients were less likely to report pain than their younger counterpart among hospitalized patients with cancer receiving palliative care [54], patients receiving radiotherapy [2], and cancer clinic patients with less advanced and more advanced cancer stages [53]. Older adults with cancer accept pain as part of an unavoidable situation in their life courses, adjust their routines better than younger adults [3], and mentally prepare for managing changes in their physical status [55].

In the context of tablet-based data collection by self-report with a single-item screen display, the findings do not support a reporting bias explanation for the age-group differences since the differences were not observed for the pain-related barriers [56]. When the tablet-based method was used to collect data, the acceptability of using the computer differed based on the frequency of computer use by the patient (i.e., daily, weekly, monthly, or never) prior to entering the study (p<.003) and based on age groups (p<.009) with higher acceptability in a younger age group compared to the older groups [57]. However, the differences in acceptability scores were relatively small (means ranged from 11.8 to 12.6 on the scale with a maximum score of 14) and not clinically meaningful [57]. Our findings also indicated that less computer use was associated with old age. Yet, the time required to complete the tablet-based data entry did not differ significantly among the three age groups. Published findings and ours, therefore, supported the feasibility and acceptability for older adults, up to the age of 100 years, to complete the computer-based data collection at home for research and clinical purposes.

Given that the number of comorbidities was not significantly different across the age groups and that the 65–84 group had more comorbidities than those younger in our study, differences in other diseases or chronic conditions seem to be an unlikely explanation for the more intense pain and symptoms among the younger group. Alternative explanations may be the physiological changes in organ function due to pharmacokinetics/pharmacodynamics as patient ages. Decreases in organ function with aging may enhance pain control among the older age groups because reduced renal excretion of drugs results in increased serum levels and changes in drug metabolism and distribution from the alteration in nutritional status and body composition [58]. The effects of aging changes on a longer duration of pain control are consistent with lower pain intensity among the older patients and increased step 3 opioid prescriptions among the younger patients.

As previously noted, older adults tend to be more resilient than younger adults with less emotional distress [59] and cope better than the younger adults by accepting pain as part of cancer progression and modifying activities to accommodate everyday life resulting in less stress [3, 60]. This possibility is supported indirectly by other study findings [2, 61]. Functional impairment was more common in older adults, significantly associated with pain levels [61]. Older adults perceived functional impairment as a more significant problem, whereas pain was for younger counterparts [2]. Another possible explanation would be related to survivorship bias. Patients who have survived until the oldest ages might have had better adaptation and coping through their life courses [55, 60]. Patients who did not cope well or adapt well to the changes due to illness might have died before reaching older ages and were not included as oldest-old in studies.

Our findings indicate that pain medication prescriptions differed significantly across the three age groups. A larger proportion of the youngest group had more than one medication and had a step 3 opioid than the older adults. Barriers to pain management, however, did not differ among the three age groups, which indicates that all had similar levels of belief about addiction, potential side effects, pain control, and the relationship between the use of pain medication and disease progression. Other researchers reported similar [14] or lower [62] barriers to pain management, and similarly, their barrier scores were not significantly associated with age.

There are study limitations that warrant consideration. Since pain was the primary focus of our RCT, other confounding factors were not measured, such as depression, anxiety, coping skills, and social support. Our study excluded patients without pain or those with cognitive and physical impairments that would prevent them from completing the study. The cognitive status of our patients was assessed clinically without formal measurement, and it is not clear whether unrecognized cognitive impairment could have affected our findings. We measured comorbid conditions differently than the commonly used comorbidity instruments such as Charlson comorbidity index or Elixhauser comorbidity index. Thus, the comorbid conditions of our study cannot be directly compared with the findings of the other two instruments. The number of patients in the oldest-old group was the smallest among all groups and the oldest-old group was predominately White, both of which might have affected the findings. Since the minority sample included mostly Black patients, it is unknown how representative the findings are to other racial and ethnic minorities. Finally, all patients in this study were receiving hospice care. Thus, patients who could not use palliative care or hospice care due to various barriers [63] were not included in this study, limiting the generalizability of the findings.

Despite a similar number of comorbid conditions, older hospice patients (65 and older) with cancer reported less pain and symptom distress than younger patients (20–64 years old). Since the barriers scores did not differ by age groups, both the older and younger adults were concerned about patient-related barriers to pain management (e.g., concern about addiction, tolerance, telling their provider about their pain, and side effects of analgesics). These findings warrant multiple clinical implications, including the importance of measuring pain and symptoms in all age groups with tools easy to use and document patient-reported outcomes. Further research should focus on developing tailored, age-sensitive interventions for patients in all age groups to minimize their enduring pain and symptom distress levels at life’s end.