Patient-reported outcome measures used in studies of palliative surgery in cancer care: a scoping review

Introduction

While surgical treatment of cancer is often performed with the intent to cure, cure is not always possible. Surgical palliation of cancer may still be indicated if operating may improve symptoms or prevent worsening of symptoms caused by advanced malignancy. Recommendations from the National Academy of Medicine, American Society of Clinical Oncology, and American College of Surgeons recognize the importance of palliative care in the comprehensive management of patients with cancer (1-3) and palliative intent surgeries make up 6–30% of the surgeries performed at cancer centers worldwide (4,5). Despite the commonality of cancer surgeries which aim to palliate symptoms that influence health-related quality of life (HRQL), the benefits of palliative cancer surgery have largely been measured in terms of mortality and morbidity, and not HRQL. We thus conducted a secondary scoping review of an existing systematic review corpus (6) to understand how often and which HRQL patient-reported outcome measures (PROMs) are being utilized.

While there has been a significant increase in research examining palliative surgery, prior systematic reviews identified a lack of uniformity in defining palliative surgery, as well as heterogeneous outcomes measured (7-9). For instance, outcomes have included hospital length of stay, number of days home, in-hospital mortality, treatment concordance, mortality, morbidity, patient or caregiver quality of life, and frequency of documentation. Despite the fundamental mission of palliative surgery to maximize HRQL, how HRQL is measured, whether HRQL outcomes are measured with validated PROMs, and what specific domains these instruments capture remains unclear. As palliative surgeries are performed with the goal of improving patients’ physical symptoms, outcomes which measure HRQL from the patient’s perspective, e.g., with PROMs, is necessary.

This secondary scoping review identified PROMs used to assess HRQL outcomes for patients undergoing palliative thoraco-abdominal cancer surgery. By characterizing HRQL domains captured by existing PROMs used in palliative surgery research, we aimed to identify gaps in current outcome measures to inform adaptation of or development of palliative surgery-specific PROMs. We present this article in accordance with the PRISMA-ScR reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-147/rc).

Methods

This manuscript reports a secondary scoping review drawing on a previously published systematic review (Wong et al., 2025) that identified studies of palliative thoraco-abdominal procedures for cancer patients (6). Institutional Review Board approval was not required for this scoping review as it utilized only publicly available, published literature without direct human subject involvement. The present scoping review was not registered and no formal protocol was developed; the parent systematic review was similarly not registered.

Data sources and search strategy

A search of PubMed, Embase, and CINAHL databases was conducted in December of 2023 to include articles published between August 1, 2005 and December 31, 2023. The search strategy included combinations of ‘palliative surgery’, ‘surgery’, ‘palliat*’, ‘cancer’, and ‘malignant’, and the full search strategy is included in the Table S1 (6).

Inclusion and exclusion criteria

Retrospective and prospective studies providing a definition of palliative surgery for thoraco-abdominal procedures for cancer patients were included. Studies that included other procedure types (e.g., orthopedics) in addition to thoracic or abdominal procedures were also included. Only English-language papers were included. Review articles, meta-analyses, commentaries, editorials, case reports, lectures, and clinical conferences were excluded (6). We additionally screened and included papers that listed an HRQL outcome measure.

Study selection and data extraction

For the first phase of study selection, three reviewers independently reviewed retrieved publications in two stages. In the first stage, two reviewers (J.S.M.W. and X.C.L.) independently screened titles and abstracts; in the second stage, three reviewers (J.S.M.W., X.C.L. and O.N.F.) reviewed full text articles with a fourth reviewer (E.J.L.) resolving discrepancy. In the subsequent scoping review to identify studies including patient reported HRQL measures, full texts were reviewed by two reviewers (B.O.W., S.N.) and a third reviewer (E.J.L.) resolved discrepancies.

Data synthesis and analysis

Key study characteristics (country, design, population size, study population, PROM used) were extracted and summarized to show country of origin, study design and setting, number of study participants, primary cancer and site of metastasis, nature of palliative surgery, and measured outcomes. This study aimed to identify patient-reported HRQL measures (either PROMs or non-validated investigator-developed questionnaires), thus further extraction identified whether and which PROMs were used. A PROM was defined as a validated questionnaire filled out by a patient without assistance from a healthcare professional used to measure the effect of a medical intervention on symptoms or groups of symptoms. Studies which used non-validated investigator-developed questionnaires were categorized as using non-PROMs. Disagreements between reviewers were resolved through discussion with a third reviewer. Original copies of the PROM and the publication reporting their development were obtained. No PROMs were unavailable. Formal critical appraisal of included sources was not performed, consistent with scoping review methodology.

Thematic analysis and coding of PROM items

Items from each PROM were then extracted and listed in a Microsoft Excel worksheet for coding. All PROM items were independently coded by two reviewers (B.O.W., S.N.) with a sub-level code informed by grounded theory methodology. Sub-level codes emerged inductively through iterative review of PROM items, with new sub-level codes added when items did not fit existing categories. Each item was assigned to a single sub-theme.

Independent coding resulted in strong inter-rater reliability with a Cohen’s kappa of 0.72 [95% confidence interval (CI): 0.65–0.79 indicating substantial agreement] (10). Items that could belong to multiple sub-level code were discussed between coders until consensus was reached. All discrepancies were resolved with discussion and consensus between coders.

All sub-level codes were subsequently grouped thematically into six inductively developed top-level domains (physical symptoms, functional status, psychiatric, coping, social, and structural/medical care). After initial coding which generated preliminary subthemes, sub-level codes appearing only once or twice were reviewed for potential consolidation; conceptually similar subthemes (e.g., “sexual function” and “sexual enjoyment”) were combined into broader categories (e.g., “sexual well-being”) to reduce redundancy and improve interpretability.

For papers which did not utilize PROMs to evaluate for HRQL, investigator developed questionnaires were analyzed for content, with each individual item from the questionnaire mapping to a relevant sub-level code or coded as “other”.

Results

After removing duplicates, 1,915 unique articles were screened for inclusion and ultimately 92 articles studied patients undergoing palliative surgical interventions for advanced cancer of the thoraco-abdominal region. Of these 92 studies, 16 (17.4%) studies listed HRQL as an outcome measure (see Figure 1) and of these, 14 measured HRQL via a patient-reported measure. Non-patient-reported HRQL outcomes included the Eastern Cooperative Oncology Group performance status (ECOG PS) score (11), which is an observer-scored measure of a patient’s functional capabilities; and electronic medical record (EMR) documentation of HRQL including documentation of end-of-life quality metrics (12) or functional improvement of symptoms. Of the 14 studies which used a patient-reported measure, 11 (78.6%) reported on symptoms or other HRQL measures with PROMs, including 2 studies which used both PROMs and investigator developed questionnaires. The remaining 3 studies used only investigator developed questionnaires.

Figure 1 PRISMA flow diagram for study selection. A total of 1,915 unique records were screened, of which 92 studies were included in the primary systematic review and of which sixteen studies utilized a patient-reported HRQL outcome and met criteria for the secondary scoping review. CINAHL, Cumulative Index to Nursing and Allied Health Literature; EMBASE, Excerpta Medica Database; GI, gastrointestinal; HPB, hepatopancreaticobiliary; HRQL, health-related quality of life.

Study characteristics

Table 1 summarizes the 14 studies which met inclusion criteria and denotes the 11 studies which included PROMs. All studies were conducted in the past two decades (between 2007 and 2023). Of the 14 total studies, 42.9% (6 of 14) were conducted in the United States; 6 studies (42.9%) were retrospective cohort studies, and 6 studies (42.9%) were prospective cohort studies; the majority of studies (8; 57.1%) were single institution.

These 14 studies included a total of 1,812 patients; the 11 studies which utilized validated PROMs cover a total of 888 patients. Sample sizes ranged from 24 to 639 (median =83). The study with the most patients (639 patients) did not use a PROM and did not describe what individual questions were included in their investigator developed questionnaire.

PROMs

Of the 11 studies which utilized PROMs, the median number of PROMs used in a study was one. In total, 13 unique PROMs were utilized (Table 2). The most frequently used PROMs were the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ) C30, National Cancer Institute (NCI) Fatigue Score, EORTC QLQ-STO22, EuroQOL (EQ) 5D, Psychological Distress Tool (PDT), and Gastric Outlet Obstruction Scoring System (GOOSS), which were each used in two studies. EuroQOL group 5 domain 5 level version (EQ-5D-5L) is a newer version of the EQ-5D which included only 3 levels; EORTC QLQ-C30 is a 30-question general cancer QOL questionnaire while EORTC QLQ-STO22 was developed as a disease-specific module for gastric cancer designed to be used in conjunction with EORTC QLQ-C30. No PROM was used by more than two studies. Of the 13 PROMs, 7 were developed for cancer patients (Table 3). The remaining 6 PROMs were developed for general population and 5 were subsequently validated for use in cancer populations. None of these PROMs were specifically designed or validated for use in palliative surgical care.

HRQL concepts

The 13 unique PROMs used included 242 total items which were ultimately coded into 6 top-level codes (Table 4). All items were initially coded into 83 sub-level codes and consolidated into 62 unique sub-themes (see Table S2). The 6 top-level codes were (I) physical symptoms (e.g., pain, nausea, fatigue); (II) functional status (e.g., ability to accomplish activities of daily living, ability to walk, sexual function); (III) psychiatric (e.g., anxiety, depression); (IV) coping (e.g., feeling distress, feeling angry, feeling supported); (V) social (e.g., affecting personal relationships, affecting leisure activities); and (VI) structural (e.g., access to care, financial stress).

“Physical symptoms” was the most assessed theme (76 items total), followed by “coping” (51 items) and “functional status” (50 items); 33 items were coded as “psychiatric”, 18 items were “social” and 14 items were “structural”. Physical symptom items outnumbered structural items by more than 5-fold. Individual PROMs varied substantially in PROM coverage. Cancer Finances Tool (CFT) has no items covering physical symptoms, psychiatric symptoms, coping or social domains and EORTC QLQ CR29 dedicates 20 of its 29 total items to physical symptoms. Four of thirteen PROMs [HRQL Caregiver, PDT, EORTC QLQ-C30, and Functional Assessment of Cancer Therapy (FACT)-G] had items across all six domains.

The most common subtheme assessed was “fatigue” (physical symptoms) which was assessed by 11 items across 8 PROMs. Four subthemes were each assessed by 10 items: “change in stools” (across 2 PROMs), “affecting personal relationships” (across 5 PROMs), “activities of daily living” (across 6 PROMs) and “financial stress” (across 4 PROMs) (see Figure 2).

Figure 2 Most frequent subthemes in PROMs for palliative cancer surgery. The 20 most frequently assessed sub-themes across 13 identified PROMS, ranked by number of items. Fatigue was the most represented subtheme (11 items), followed by change in stools, affecting personal relationships, financial stress, and activities of daily living (10 items each). Colors indicate 6 top-level codes: physical symptoms, functional status, psychiatric, coping, social, and structural. PROM, patient-reported outcome measure.

Of the top 25 sub-themes assessed by PROMs, 8 were under the physical symptoms domain, 6 were under the functional status domain, and 5 were under the coping domain. 37 sub-themes were captured by 3 or fewer items, with 13 (21.0%) sub-themes appearing only once (Figure S1).

Investigator developed questionnaires

Of the 5 studies which used investigator developed questionnaires instead of or in addition to PROMs, one study did not list in their methods or supplementary data the individual questions assessed in their investigator-developed questionnaires: Zongo et al. [2022] described evolution of signs or symptoms after palliative surgery, categorizing complete disappearance of symptoms, decrease in intensity of symptoms, persistent of symptoms, or worsening of symptoms, but did not list which symptoms were tracked (25). The remaining 4 studies had investigator-developed questionnaires to evaluate patient-reported outcomes (Table 5).

Of these 4 studies, one study (Badgwell et al.) used an open-ended questionnaire to report “up to four of their most bothersome symptoms during the past week”; all identified symptoms mapped to subthemes from existing PROMs (44). Podnos et al. [2007] assessed general distress via PDT and ratings of overall HRQL, physical, psychological, social, and spiritual dimensions of HRQL as well as pain (14). Maturu et al. [2008] developed a questionnaire that included three symptoms which mapped to subthemes from existing PROMs and two symptoms which did not (weight loss, upper gastrointestinal bleed) (13). Cohen et al. [2023] developed a single-question questionnaire to assess decisional regret or satisfaction with palliative surgery (26).

Discussion

Our scoping review demonstrates that despite improved quality of life (physically, psychologically, socially or spiritually) being the purported goal of palliative care interventions, only a small percentage (17.4%) of studies on palliative surgery interventions examine HRQL as an outcome. This makes evident the discrepancy between the goals of palliative surgical care and the outcomes currently being measured; as Wong et al. demonstrate, the most common outcomes reported instead are survival outcomes and recovery outcomes (6).

Our study also demonstrates heterogeneity of outcome measures, with 11 studies using 13 unique PROMs and no PROM being used by more than 2 studies. Because of this heterogeneity, no meta-analysis of PROMs across studies was possible. An analysis of these PROMs demonstrates that all but one of these PROMs were developed for the cancer patient population or subsequently validated for the cancer patient population, but none are specifically developed or validated for use among cancer surgery or palliative surgery patients.

The PROMs analyzed in this study cover six general domains: physical symptoms, functional status, psychiatric, coping, social, and structural aspects of HRQL. These six domains which emerged inductively from initial sub-themes map to the physical health, mental health, and social health core domains developed by the Patient-reported Outcomes Measurement Information System (PROMIS) (45) or the Physical, Psychological, Social Relationships and Environment components of domains of HRQL developed by the World Health Organization (WHO) (46) demonstrating alignment in the core themes for evaluating HRQL.

The majority of items assessed by PROMs focus on physical symptoms and functional status, with less focus on coping, social, or structural aspects of HRQL. As surgical interventions target physical domains, this emphasis may be appropriate. However, surgical intervention can impact all aspects of HRQL, and other domains are also important to assess. The identified imbalance in domain coverage across existing PROMs used in palliative surgery studies may reflect a systemic underrepresentation of non-physical HRQL dimensions in existing PROMs. Despite this, financial toxicity arose as one of the most measured subthemes, calling attention to the need for measurement frameworks which may consider other structural impacts to HRQL. The dominance of physical symptom and functional status assessments may reflect historic origins of many HRQL instruments in symptom management trials but fails to capture the spectrum of suffering that palliative interventions aim to address or has the potential to impair. The variety of physical symptoms captured also reflects the heterogeneity of palliative cancer surgeries which include surgeries to address bowel obstruction, jaundice, bleeding, or perforation, all of which may target different physical symptoms to ameliorate or prevent.

Five studies utilized their own investigator-developed questionnaires: most items assessed by these questionnaires focused on physical symptoms and were covered by other existing PROMs, but Maturu et al. included two HRQL constructs (weight loss and upper gastrointestinal bleeding) which were not covered by existing PROMs (13). While both are important symptoms to be captured for patients undergoing palliative surgery interventions which may aim to allow for improved nutrition intake (e.g., via gastrostomy tubes) or to decrease occurrences of gastrointestinal bleeds, these constructs may be captured via clinical data and may not require patient reporting to assess. Of the five studies which used investigator-developed questionnaires, two studies also used PROMs, indicating awareness of validated studies but an attempt to capture constructs which may not be included in PROMs. Badgwell’s open-ended questionnaire identified seven “most bothersome symptoms”, all of which map to sub-themes in existing PROMs.

Several implications emerge from these findings. First, future PROM development for palliative surgery should aim for balanced representation across all six HRQL domains, attending particularly to under-measured structural and social domains. Second, none of the existing PROMs were developed or validated for surgical palliative care populations. Patients undergoing palliative surgery face unique considerations, balancing risk of short-term surgical complications or worsening physical symptoms against symptom burden and long-term functional status. Additionally, HRQL may be particularly difficult to assess for cancer patients for whom HRQL is heavily impacted by the psychological burden of advance cancer diagnosis. These specific HRQL considerations may not be captured by instruments developed for general cancer patients or non-surgical palliative care, thus further qualitative research is needed to provide evidence of the validity of existing modern PROMs in this vulnerable patient population. Lastly, the heterogeneity of PROMs makes cross-study comparison difficult and prevent meta-analysis. Development of a standardized PROM for palliative cancer surgery research would allow for evidence synthesis and comparison across disease populations, healthcare systems, or countries. The paucity of studies included in this scoping review demonstrate a need for researchers to use PROMs in research for palliative cancer surgery and to develop consensus on the most appropriate PROMs for this population.

This review has several limitations. First, the small number of studies which met inclusion criteria as well as the significant heterogeneity amongst studies and their evaluated outcomes, made comparison across studies inapplicable. Second, we restricted our search to English-language publications and may have missed PROMs used in non-English speaking countries, introducing potential geographic bias. Third, we focused on thoraco-abdominal cancer procedures; different PROMs may be used to assess for other palliative surgical contexts.

The limitations of current research in this space reinforce the need for standardized PROMs specifically developed for palliative surgical patients which capture the aspects of HRQL which matter to this unique population. Our findings of substantial heterogeneity in PROM use (13 instruments across 11 studies) echoes concerns regarding measurement standardization across palliative care research: a recent systematic review of HRQL PROMs used in palliative care randomized controlled trials (RCTs) identified 15 instruments, with less than half validated in advanced life-limiting illness populations and noting a “disparate” range of measurements which were not validated for target patient groups (47,48). While mortality metrics are conventionally used to measure the value of surgery and of cancer interventions, they are not the relevant metric to determine the value of palliative surgery. While morbidity metrics may capture whether there was worsening of symptoms due to complications after surgery, they may not capture the priorities of patients e.g., longer-term physical symptom relief, functional recovery, ability to engage with social relationships, effects of financial toxicity, etc.

Despite improving HRQL being the fundamental goal of palliative cancer surgery, PROMs remain severely under-utilized, as demonstrated by this review. This may be due to lack of familiarity with PROMs or a need for standardized, appropriate PROM for this patient population. As many palliative surgeries for abdominal cancers may be done in an emergent or urgent setting, PROM measurement may be difficult; thus, developing PROMs that are acceptable and feasible for the palliative cancer surgery population pose an additional challenge. However, developing an appropriate and standardized PROM or leveraging existing PROMs for the palliative cancer surgery population will allow for demonstration of the value of palliative surgery to patients, their caregivers, physicians, and healthcare systems.

Conclusions

This scoping review demonstrates that despite improving HRQL being a fundamental goal of palliative cancer surgery, a paucity of studies (17.4%) evaluate HRQL, and those that do utilize 13 different PROMs, none of which were validated for palliative surgery patients specifically. This points both to the underutilization and lack of standardization of PROMs for this patient population. This outcome heterogeneity prevents cross-study comparison and meta-analysis, and the thematic analysis of utilized PROMS demonstrates uneven emphasis on structural, social, or coping domains, and may indicate a failure to capture the full spectrum of patient priorities and suffering that palliative surgical interventions my aim to address for cancer patients. Higher utilization of standardized HRQL outcomes is necessary to study and demonstrate the value of palliative cancer surgery to patients, caregivers, and healthcare systems.

Acknowledgments

None.

Footnote

Reporting Checklist: The authors have completed the PRISMA-ScR reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-147/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-147/prf

Funding: This work was supported by National Institute of Health (No. T32CA092203-22 to B.O.W., No. T32DK007754-25 to O.N.F.).

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-147/coif). B.O.W. reports grant from a T32 grant (No. T32CA092203-22), and O.N.F. reports grants from a T32 grant (No. T32DK007754). The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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