Personalized Pain Goal Achievement with Comparable Pain Intensity and Lower Palliative Care Referral in Adolescents and Young Adults with Cancer

Abstract

Background:

Adolescents and young adults (AYAs) with cancer usually receive high-intensity end-of-life care; however, early integration of specialized palliative care can mitigate this.

Objective:

To examine personalized pain goal (PPG) achievement and palliative care visits for pain management among AYAs with cancer.

Design:

Cross-sectional survey.

Setting/Patients:

Consecutively-enrolled outpatients and inpatients with cancer at a university hospital.

Measurements:

Patient data and self-reported questionnaires were collected from medical records.

Results:

Among 1226 patients with cancer-related pain, 56 (4.6%) were AYAs. Median pain intensity and PPGs were four each. Pain intensity did not differ significantly between AYAs and older patients (p = 0.768); however, AYAs reported higher scores as their PPGs compared to older patients (p < 0.001). AYAs had greater achievement of PPGs (>50%, p = 0.025) and fewer visits to palliative care centers (p < 0.001).

Conclusions:

Although AYAs more frequently achieved their PPGs, they also reported comparable pain intensity and had significantly lower referral rates to palliative care centers. These findings suggest that achievement of PPGs alone may not fully capture unmet pain management needs in AYAs and that proactive referral should be considered when pain intensity remains substantial.

Keywords

adolescents and young adults cancer personalized pain goals palliative care

Introduction

Adolescents and young adults (AYAs) with cancer are more likely to receive high-intensity care, including aggressive interventions, near the end of life.^1–3 Several factors have been proposed to explain this pattern, including a stronger emphasis on curative treatment during the treatment phase.⁴ Early integration of specialist palliative care has been shown to mitigate end-of-life care intensity.^1–3 Referral during the treatment phase allows early palliative care involvement⁵; however, barriers to timely referral may exist in AYAs, potentially contributing to greater care intensity later in the disease trajectory.

Personalized pain goal (PPG), defined as the maximum level of pain a patient considers acceptable, have been used by palliative care clinicians to support individualized pain management.⁶ PPG achievement, defined as pain intensity less than or equal to the PPG, has been reported in 35%–45% of patients with cancer-related pain.^7,8 Previous studies suggest that higher PPG settings may be associated with reduced help-seeking behavior and lower specialist referral.⁹ However, the clinical implications of PPG achievement in AYAs remain unclear.

To our knowledge, no study has specifically examined PPG achievement and palliative care referral patterns among AYAs with cancer in a hospital-wide cohort. We aimed to investigate the characteristics of PPG achievement in AYAs with cancer and to explore whether PPG achievement corresponds to specialist palliative care utilization in this population.

Materials and Methods

Study design

We conducted a cross-sectional survey of patients with cancer-related pain to compare pain intensity and PPG between AYAs and older patients with cancer, examining palliative care visits for pain management among AYAs. Data were registered using identification codes to ensure anonymity. The study was approved by the Medical Ethics Committee of Kansai Medical University (reference number: 2018151).

Study participants

This study included outpatients and inpatients who visited a university hospital in Osaka and met the following eligibility criteria: (1) had malignant diseases, (2) experienced pain, and (3) were aged ≥ 15 years. The exclusion criteria were as follows: (1) comorbid psychiatric conditions such as cognitive impairment or delirium; (2) refused participation. Continuous registration was conducted to prevent selection bias. Patients who visited the institutions between January and August 2019 were screened and enrolled.

Eligible patients were consecutively recruited during the study period from outpatient clinics and inpatient wards at departments providing cancer care. At registration, all outpatients received a self-administered, paper-based pain questionnaire at the reception desk, which was collected during their visit and entered into the electronic medical record. For inpatients, the questionnaire was distributed in the ward. The study was conducted using an opt-out consent approach, and patient data were anonymized prior to analysis. Although all participants received general palliative care from their treating departments, they were not all referred to specialized palliative care services.

Data collection

We collected data regarding demographics, Eastern Cooperative Oncology Group performance status (ECOG PS), medical treatment, primary cancer site, opioid drug use and dose, pain-related visit to palliative care center, and self-reported questionnaire on pain (such as pain intensity and pain-improvement goals).

Measures

Pain intensity

Patients rated their average pain intensity in the preceding 24 hours using an 11-point numerical rating scale (NRS) ranging from 0 (no pain) to 10 (worst imaginable pain).¹⁰ Pain scores of 1–4, 5–6, and 7–10 were categorized as mild, moderate, and severe, respectively.¹¹

PPG achievement

PPG achievement was defined as an average pain intensity that is equal to or lower than each patient’s PPG in the preceding 24 hours.^7,8 Reported PPG achievement rates in patients with cancer-related pain range 30%–45% in previous studies.^6,8

Statistical analysis

We estimated the AYA proportion among all registered patients and calculated 95% confidence intervals. Participants were categorized into three groups, namely AYA (age, 15–39 years), middle-aged (age, 40–64 years), and adult (age, ≥ 65 years). Pearson’s chi-square test was used to analyze categorical variables, and the Kruskal–Wallis test was used to compare nonnormally distributedcontinuous variables among the three groups. When significant differences were detected, post-hoc multiple comparisons with Bonferroni correction were conducted. Additionally, a multivariate logistic regression analysis was conducted to identify factors independently associated with PPG achievement. Independent variables included generation (AYA group), sex (female), outpatient status, ECOG PS, medical treatment (curative treatment), and opioid drug use dose. ECOG PS and opioid dose were treated as continuous variables in the analysis. Odds ratios with 95% confidence intervals were calculated.

Statistical analyses were conducted using SPSS version 30.0 (SPSS, Inc., IBM, Chicago, IL, USA). P values <0.05 were considered statistically significant.

Results

During the study period, 5,995 patients with cancer visited our university hospital. Of these, 1,312 were eligible and 78 were excluded due to comorbid psychiatric conditions such as cognitive impairment or delirium, leaving 1,234. After excluding eight patients with missing data, 1,226 were finally enrolled.

The mean age of the study cohort was 66.5 (standard deviation 13.3) years; 49.1% were female, and 66.1% were outpatients. The median ECOG PS was 1 (IQR: 0–2), with 39.8% receiving curative treatment. Median NRS score and PPG were 3 (IQR: 2–5) and 2 (IQR: 0–3), respectively. Additionally, 25.7% achieved PPG, 13.5% used opioids (median dose 20 mg, IQR: 10–30), and 16.0% visited palliative care centers for pain relief.

In this cohort, 56 (4.6%, 95% CI: 3.5–5.9) were AYAs. Comparisons of demographic and clinical characteristics between the different age groups are presented in Table 1. AYAs tended to be female and in the treatment phase. Similar age-based comparisons of NRS scores, PPG scores, and the proportion of palliative care center visits are summarized in Table 2. AYAs had a median NRS and PPG of four each. Compared with older patients, AYAs had similar NRS scores (p = 0.768) but higher PPG scores (p < 0.001), higher PPG achievement rates (>50%, p = 0.025), and fewer palliative care visits (p < 0.001).

Table 1.

Generational Comparison of Demographic and Clinical Characteristics in Consecutively-Enrolled Patients with Cancer-Related Pain

	Adolescents-and-young-adults group	Middle-age group	Adult (aged ≥ 65 years group)
Characteristic	(n = 56)	(n = 356)	(n = 814)	p	Multiple comparison
Age (years), mean (SD)	29.1 (7.2)	54.8 (6.8)	74 (6.6)
Sex, female, n (%)	36 (64.3)	213 (59.8)	353 (43.4)	<0.001	a > c, b > c
Outpatients, n (%)	38 (67.9)	227 (63.8)	545 (67.0)	0.547
ECOG PS, median (IQR)	1 (0–2)	1 (0–2)	1 (0–2)	0.348
Medical treatments, n (%)
Curative cancer treatment	32 (57.1)	178 (50.0)	278 (34.2)	<0.001	a < c, b < c
Noncurative treatment	24 (42.9)	178 (50.0)	536 (65.8)	<0.001	a < c, b < c
Primary cancer site, n (%)
Lung	8 (14.3)	46 (12.9)	111 (13.6)
Gastrointestinal	7 (12.5)	56 (15.7)	191 (23.5)
Liver, pancreas, biliary system	4 (7.1)	38 (10.7)	139 (17.1)
Breast	7 (12.5)	72 (20.2)	57 (7.0)
Gynecological	11 (19.6)	43 (12.1)	58 (7.1)
Urological	2 (3.6)	24 (6.7)	94 (11.5)
Head and neck	6 (10.7)	40 (11.3)	92 (11.3)
Others	11 (19.7)	37 (10.4)	72 (8.9)

*p < 0.05.

ECOG PS, Eastern Cooperative Oncology Group performance status; IQR, interquartile range; SD, standard deviation.

Table 2.

Generational Comparison of the Numerical Rating Scale and Personalized Pain Goal Scores, and the Proportion of Palliative Care Center Visits in Consecutively-Enrolled Patients with Cancer-Related Pain

Characteristic	Adolescents-and-young-adults group (n = 56)	Middle-age group (n = 356)	Adult (aged ≥ 65 years group) (n = 814)	p	Multiple comparison
NRS score, median (IQR)	4 (2–5)	3 (2–6)	3 (2–5)	0.768
PPG score, median (IQR)	4 (2–5)	2 (0–3)	1 (0–3)	<0.001	a < b*, a < c, b < c**
PPG achievement, n (%)	29 (51.8)	107 (30.1)	179 (22.0)	0.025	a < b, a < c, b < c
Opioid drug use, n (%)	5 (8.9)	49 (13.8)	112 (13.8)	0.587
Opioid drug use dose (mg/day), median (IQR)	20 (15–30)	30 (15–60)	30 (15–47.5)	0.838
Visit to palliative care center for pain relief, n (%)	3 (5.4)	37 (10.4)	156 (19.2)	<0.001	a < b*, a < c, b < c**

*p < 0.05, **p < 0.01, ***p < 0.001.

IQR, interquartile range; NRS, numerical rating scale; PPG, personalized pain goal.

Multivariate logistic regression revealed that AYA and performance status classifications significantly predicted PPG achievement (Table 3). The likelihood of achieving PPG was approximately 3.3 times higher in the AYA group than in older adults (OR: 3.255), whereas poorer performance status was modestly associated with a lower likelihood of achieving PPG (OR: 0.821).

Table 3.

Multivariate Logistic Regression Analysis of Factors Associated with Personalized Pain Goal Achievement

Variable	Coefficient β	Wald	p value	OR	95% CI
Generation, AYA group	1.18	17.445	<0.001	3.255	1.871–5.663
Sex, female	0.174	1.766	0.184	1.191	0.920–1.540
Outpatients	−0.068	0.234	0.629	0.935	0.711–1.229
ECOG PS	−0.198	9.681	0.002	0.821	0.724–0.929
Medical treatment, curative treatment	−0.137	1.403	0.236	0.872	0.695–1.094
Opioid drug use dose	−0.004	1.59	0.207	0.996	0.989–1.002

AYA, adolescents and young adults; ECOG PS, Eastern Cooperative Oncology Group performance status; OR, odds ratio; 95% CI, 95% confidence intervals.

Discussion

This study demonstrated that AYAs with cancer more frequently achieved their PPGs than older adults, despite reporting comparable levels of pain intensity. The overall PPG achievement rate in our cohort was consistent with previously reported rates in patients with cancer-related pain.^7,8 However, more than half of AYAs achieved their PPGs.

The higher rate of PPG achievement among AYAs appears may be attributable to their higher PPG settings. Prior studies have suggested that higher PPGs may be associated with reduced help-seeking behavior and lower specialist referral.^9,10 Because no significant difference in pain intensity was observed between age groups in our study, goal achievement in AYAs may reflect a broader range of acceptable pain rather than a lower symptom burden.

One possible explanation for the higher PPG observed in AYAs relates to the developmental and psychosocial characteristics unique to this age group. AYAs are often in the treatment phase and may prioritize the continuation of disease-directed therapy and maintenance of daily life, possibly resulting in greater tolerance of symptoms. In addition, AYAs may perceive higher levels of pain as acceptable, contributing to higher PPG settings and potentially reducing the perceived need of additional care. However, causal relationships cannot be inferred from this study. Further research, particularly longitudinal studies, is needed to clarify whether higher PPGs are associated with fewer palliative care visits for pain management or delayed referral to palliative care, as well as to better understand the psychosocial factors influencing PPG setting in AYAs.

Notably, palliative care visits for pain management were significantly less frequent among AYAs. Early integration of specialized palliative care has been shown to reduce end-of-life care intensity and improve symptom outcomes.^1–3 In addition, patients with cancer, particularly AYAs, often experience multidimensional suffering—including psychological, social, and spiritual distress—commonly referred to as “total pain,” which can be adequately addressed by palliative care. In this context, reliance on PPG achievement alone may not fully capture unmet pain management needs in AYAs, particularly when pain remains substantial. Moreover, this finding may have been influenced by the higher proportion of AYAs receiving curative treatment, which could affect patterns of palliative care utilization. In addition, the lower proportion of opioid use among AYAs may be related to differences in treatment phase, including a higher proportion receiving curative treatment, as well as potential differences in pain perception and reporting.

Our findings suggest that pain intensity should remain a central consideration in referral decisions. When pain intensity remains substantial, proactive referral to specialized palliative care may be warranted, regardless of whether patients report goal achievement.

Several limitations should be acknowledged. This was a single-center cross-sectional study with a relatively small number of AYAs. Causal relationships cannot be inferred. Further multicenter and longitudinal studies are needed to clarify how patient-defined goals influence referral patterns and clinical outcomes. Future studies should further explore the associations between palliative care utilization and clinical variables, including age group, treatment status, and opioid use.

Conclusions

Although AYAs with cancer more frequently achieved their PPGs, their pain intensity was comparable to that of older adults and referral to specialized palliative care was less frequent. These findings suggest that PPG achievement alone may not fully capture unmet pain management needs in AYAs. Clinicians should consider referral to specialized palliative care when pain intensity remains substantial, regardless of whether patients report goal achievement.

Authors’ Contributions

H.H. designed the research. H.H. and H.S. were responsible for data collection and clinical evaluations. M.S. analyzed the data. H.H. and H.S. wrote the article. A.U., R.F., and J.N. provided advice on the article composition. All authors have read and approved the final article.

Supplemental Material

sj-pdf-1-pmr-10.1177_26892820261462763 — Supplemental material for Personalized Pain Goal Achievement with Comparable Pain Intensity and Lower Palliative Care Referral in Adolescents and Young Adults with Cancer

Supplemental material, sj-pdf-1-pmr-10.1177_26892820261462763 for Personalized Pain Goal Achievement with Comparable Pain Intensity and Lower Palliative Care Referral in Adolescents and Young Adults with Cancer by Hideaki Hasuo, Hiroko Sakuma, Mariko Shimazu, Akoya Ura, Ryohei Fujii, and Junji Nishiyama

Footnotes

Acknowledgments

The authors thank the Research Secretariat of the Kansai Medical University Hospital. The authors would like to thank Editage (www.editage.com) for English language editing.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

Abbreviations Used

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