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Symptoms of advanced cancer in palliative medicine: a longitudinal study
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  1. Leslye Rojas-Concha1,
  2. Maiken Bang Hansen1,
  3. Morten Aagaard Petersen1 and
  4. Mogens Groenvold1,2
  1. 1 Palliative Care Research Unit, Department of Geriatrics and Palliative Medicine, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Copenhagen, Denmark
  2. 2 Department of Public Health, University of Copenhagen, Copenhagen, Denmark
  1. Correspondence to Leslye Rojas-Concha, Palliative Care Research Unit, Department of Geriatrics and Palliative Medicine, Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Copenhagen, Denmark; leslyerojas{at}gmail.com

Abstract

Objectives This study aimed to examine the symptomatology of patients with advanced cancer at admittance to palliative care services and to investigate how the symptomatology changed during the first month, and whether these changes were associated with various patient characteristics.

Methods In a longitudinal study in Chile, outpatients with advanced cancer completed the questionnaires European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care and the Hospital Anxiety and Depression Scale. Prevalence and severity of symptoms and problems (S/Ps) at baseline were calculated. Differences in S/P scores from baseline to follow-up were calculated overall and according to patient characteristics. Multiple linear regression was used to study the associations between patient characteristics and changes in S/P scores.

Results At baseline, 201 patients answered the questionnaires and 177 completed the follow-up. Fatigue, pain and sleeping difficulties were the most prevalent S/Ps reported, and also had the highest mean scores at baseline. S/P scores at baseline varied significantly according to sex, age, civil status, residence, children, prior and current antineoplastic treatment. Emotional functioning, pain, sleeping difficulties, constipation and anxiety improved significantly during the first month of palliative care. Residence, cohabitation status, diagnosis and current antineoplastic treatment were associated with changes in S/P scores.

Conclusions Patients reported moderate-to-severe levels of S/Ps at admittance to palliative care. Several S/Ps improved the first month. Certain patient characteristics were associated with changes in S/P scores. This information may guide clinicians to more effective interventions that can improve the quality of life of patients receiving palliative care.

  • quality of life
  • symptoms and symptom management
  • cancer
  • pain
  • clinical decisions

Data availability statement

Data are available upon reasonable request. The data utilised in this study are available through the first author at the Palliative Care Research Unit, Department of Geriatrics and Palliative Medicine, Bispebjerg Hospital, University of Copenhagen. Restrictions apply to the availability of these data.

https://doi.org/10.1136/bmjspcare-2021-002999

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    Key messages

    What was already known?

    • Cancer patients report high symptom burden at the start to palliative care, but which symptoms improve or worsen following initiation of palliative care differs across previous studies.

    • Little is known about the association between patient characteristics and changes in symptomatology of patients in palliative care.

    What are the new findings?

    • Patients reported moderate-to-severe levels of symptoms at admittance to palliative care and overall emotional functioning, pain, sleeping difficulties, constipation and anxiety improved significantly during the first month.

    • Residence, cohabitation status, diagnosis and current antineoplastic treatment were associated with changes in symptomatology.

    What is their significance?

    • The high level of symptoms reported at the admittance to palliative care and changes over time, emphasises the importance of using patient-reported outcomes questionnaires to ensure that patients systematically report all their symptoms and thus, are potentially treated.

    • Changes in symptomatology may be affected by certain patient characteristics that must be considered in clinical decisions toward more effective palliative care interventions and in further research.

    Introduction

    Preserving quality of life (QOL) and relieving symptoms in patients with advanced cancer are desired outcomes of palliative care.1 Assessment of patients’ QOL and symptomatology at the start and during palliative care may help clinicians to initiate relevant palliative care interventions and evaluate their effect. Changes in symptomatology following initiation of palliative care have been investigated by using patient-reported outcomes (PRO) questionnaires, but the results were inconsistent across the studies on whether pain, fatigue, appetite loss, QOL, insomnia, constipation, nausea/vomiting and physical or emotional function improved or worsened after 2–4 weeks of palliative care.2–6 In addition, we only identified few studies assessing the association between changes in symptomatology and patient characteristics.7–9

    Chile has a population of 17.5 million inhabitants and has 52 hospital-based palliative care services/units in tertiary hospitals of the public healthcare system.10 Palliative care in the tertiary sector is provided by physicians (oncologists, internists or surgeons) and non-physicians such as nurses, paramedics and psychologists.10 11 In 2005, the national programme ‘Pain relief for advanced cancer and palliative care’ was enhanced by the Explicit Guarantees for Free Access Law (GES), aimed at providing palliative care treatment for all patients diagnosed with advanced cancer (defined as incurable progressive cancer) by a specialist.11 12 A national report showed that 67% of patients with cancer admitted to the programme in 2013 self-reported more than nine symptoms. The most prevalent symptoms and problems (S/Ps) listed were pain (90%), digestive symptoms, that is, anorexia, weight loss, nausea and vomiting (85%) and emotional symptoms, that is, anxiety, insomnia and depression (55%).13 However, to our knowledge no studies have investigated changes in S/Ps and overall QOL of patients receiving palliative care in Chile.

    The aims of the current study were (1) to examine the symptomatology of patients with advanced cancer at admittance to palliative care services in Chile, (2) to investigate how the symptomatology changed during the first month of palliative care, and (3) to investigate whether these changes were associated with various patient characteristics.

    Methods

    Design

    This longitudinal study was carried out between October 2017 and January 2018 in four hospital-based palliative care services in Santiago, Chile. The symptomatology assessments were done at admittance, and 1 month later. The study was approved by two local ethics committees in Chile. All patients gave written consent.

    Patients

    This study included outpatients admitted to one of the four palliative care services. All patients had advanced cancer and were ≥18 years of age, had knowledge of their diagnosis, Karnofsky Performance Status (KPS) score of at least 50%,14 and provided informed, written consent. Patients who declined participation, were non-Spanish speakers, or were considered too ill to participate by the staff were excluded. Sociodemographic data on sex, age, civil status, residence, cohabitation, children and education were collected at admittance. Clinical data on diagnosis, prior and current antineoplastic treatment, hospital and KPS score assessed by the physician at baseline were collected from the medical record.

    Assessments

    Patients were invited to participate in the study at their first contact with the palliative care service. Consenting patients received a booklet with the self-assessment questionnaires, that is, the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL), the Write In three Symptoms/Problems (WISP) instrument and the Hospital Anxiety and Depression Scale (HADS). The first page of the booklet contained questions on sociodemographic information and a question on whether the patient had completed the questionnaires by herself/himself or with the help of a trained clinician. After 1 month of palliative care, patients who had any appointment or phone calls with the palliative care service were asked to complete the questionnaires again.

    The EORTC QLQ-C15-PAL questionnaire consists of 15 items: two functional scales (physical and emotional functioning), seven symptom scales (pain, fatigue, nausea/vomiting, dyspnoea, sleeping difficulties, appetite loss and constipation) and one item referring to overall QOL. Fourteen items employ 4-points scales from 1 (not at all), 2 (a little), 3 (quite a bit) to 4 (very much), and QOL is rated from 1 (very poor) to 7 (excellent).15 The WISP is an open-ended instrument that permits patients to report up to three S/Ps not covered by the EORTC QLQ-C15-PAL and rate their severity from 1 (not at all) to 4 (very much).16

    HADS is a self-reporting scale that contains 14 items divided into two subscales, one for anxiety and one for depression. Each subscale comprises seven items, which are scored on scales ranging from 0 to 3 points, giving a maximum of 21 points per subscale. According to Zigmond and Snaith’s criteria, 0–7 points on a subscale represents a ‘non-case’, 8–10 points a ‘doubtful’ or possible case and 11–21 points a ‘definite case’ of anxiety or depression.17

    Statistical analyses

    The EORTC QLQ-C15-PAL scores were converted to 0–100 scales according to the Scoring Manual.18 High scores on the two functioning scales and overall QOL represent better function/QOL, while high scores on symptom scales reflect worse symptoms. Mean scores and SD of the scales in the EORTC QLQ-C15-PAL and HADS were calculated overall and according to patient characteristics at baseline. Differences in the distribution of these S/P scores across patient characteristics were tested with non-parametric analyses using Mann-Whitney U test and Kruskal-Wallis test because S/P baseline scores were non-normally distributed. Patient characteristic categories with under 5% were grouped into an ‘other’ category.

    At baseline we calculated the prevalence of having a ‘symptom/problem’ as the proportion of patients who reported EORTC QLQ-C15-PAL scores at least ‘a little’ (functioning scores ≤67 or symptom scores ≥33). Prevalence of ‘severe symptom/problem’ was calculated with patients scoring at least ‘quite a bit’ (functioning scores ≤34 or symptom scores ≥66), using the cut-points described in previous studies19 20 for all scales except overall QOL. The prevalence of patients with possible anxiety or depression (score ≥8), and definite anxiety or depression (≥11) were calculated for the HADS.17 Qualitative responses obtained from WISP were grouped into S/P categories using the list of 61 S/P-categories reported previously.16 The prevalence of patients reporting each additional S/P on WISP and the distribution of severity ratings were calculated.

    For patients who completed the study, differences in S/P scores from baseline to follow-up were calculated overall and in relation to patient characteristics; change scores were tested using Wilcoxon signed-rank test. In addition, we performed multiple linear regressions with backwards stepwise selection to identify patient characteristics significantly associated with change in S/P scores from baseline to follow-up. The significance level used was 0.05. All analyses were performed using the statistical software Statistical Package for Social Sciences V.23.

    Results

    Patient characteristics

    Figure 1 shows the inclusion of patients. Of the 394 patients admitted to the four palliative care services, 201 (80% of the eligible patients) answered the EORTC QLQ-C15-PAL, WISP and HADS at baseline (figure 1). Of these, 21 patients had died at 1-month follow-up, and 3 were too ill to participate, and the remaining 177 patients completed the follow-up questionnaires.

    Figure 1
    Figure 1

    Inclusion of patients. KPS, Karnofsky Performance Status.

    Around half of the participants were men (51.7%) and were married (55.7%). Their median age was 66 years and the median KPS score was 90. Most patients lived in their private residence with someone, had older children and had a low education level. The most frequent diagnoses were stomach cancer, colorectal cancer and breast cancer. At admittance to palliative care, 51.7% of patients had not received any prior antineoplastic treatment and 94% were not in a current antineoplastic treatment. Further details can be seen in table 1.

    View this table:
    Table 1

    Sociodemographic and clinical characteristics at baseline for the 201 patients included in the study

    Symptomatology at the admittance to palliative care

    The prevalences of having a S/P and a severe S/P, respectively, at baseline are presented in figure 2. The most prevalent S/Ps reported on the EORTC QLQ-C15-PAL were fatigue 71% (28% severely), pain 59% (29% severely) and sleeping difficulties 54% (31% severely). Nausea/vomiting (12%) and dyspnoea (21%) were the least prevalent S/Ps. Possible anxiety was reported by 21% of patients on HADS and possible depression by 19%. Definite anxiety and depression were reported by 11% and 10% of patients, respectively.

    Figure 2
    Figure 2

    Prevalence of symptoms and problems in 201 patients who completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL) and the Hospital Anxiety and Depression Scale (HADS) at baseline. ANX, anxiety; AP, appetite loss; CO, constipation; DEP, depression; DY, dyspnoea; EF, emotional functioning; FA, fatigue; NV, nausea/vomiting; PA, pain; PF, physical functioning; SL, sleeping difficulties.

    A total of 72 patients out of 201 (35.8%) reported S/Ps using the WISP instrument at baseline. These patients reported 91 S/Ps in total: 60 were additional S/Ps; 20 were elaborations of S/Ps already covered by the EORTC QLQ-C15-PAL, and 11 were diagnoses or symptoms that could not be coded. In total 80 S/Ps were grouped into 23 S/P categories. The most prevalent additional S/Ps reported on WISP were cough (5.5%), bloating (3.5%) and diarrhoea (2.5%). Overall, 70% of the additional S/Ps were reported as ‘quite a bit’ to ‘very much’ (table 2).

    View this table:
    Table 2

    Prevalence and severity of symptoms and problems reported by 201 patients using the WISP instrument at baseline

    Table 3 shows the EORTC QLQ-C15-PAL and HADS scores overall and according to patient characteristics at baseline. Overall, high symptom levels were found for fatigue, pain and sleeping difficulties. Women reported more severe fatigue than men (p=0.022), and younger patients had more severe nausea/vomiting (p=0.033), dyspnoea (p=0.023) and sleeping difficulties (p=0.008) compared with older patients. Single patients (p=0.003) and patients living in others’ residence (p=0.017) reported more impaired physical functioning. Patients with younger children experienced higher levels of fatigue (p=0.008) and nausea/vomiting (p=0.039) than patients with older children. Patients who did not receive any prior antineoplastic treatment experienced more severe appetite loss (p=0.037) than patients who did. Patients in current antineoplastic treatment experienced more impaired physical and emotional functioning (p=0.010), as well as more severe nausea/vomiting (p=0.039), anxiety (p=0.007) and depression (p =<0.001) compared with those not in treatment.

    View this table:
    Table 3

    Symptoms, problems and overall quality of life at baseline in relation to sociodemographic and clinical characteristics from 201 patients

    Changes in symptomatology

    Table 4 shows change in the S/P scores of the EORTC QLQ-C15-PAL and HADS after 1 month of palliative care. Overall, no symptoms significantly worsened. There was significant improvement in the overall mean scores of emotional functioning (p<0.001), pain (p =<0.001), sleeping difficulties (p=0.005), constipation (p=0.005) and anxiety (p =<0.001).

    View this table:
    Table 4

    Change in symptoms, problems and overall quality of life from baseline to follow-up in relation to sociodemographic and clinical characteristics from 177 patients who completed the study

    The multivariate analyses are shown in table 5. For 7 of 12 scales a subgroup difference in change over time was found, that is, for physical functioning, emotional functioning, nausea/vomiting, appetite loss, quality of life, anxiety and depression. Of the seven scales, where subgroup differences in change over time were seen, two scales (emotional functioning and anxiety) also showed an overall significantly change over time (table 4). Despite the overall improvement in emotional functioning scores, emotional function deteriorated for patients living alone with children (table 5). A larger reduction in anxiety scores was observed for patients in current antineoplastic treatment compared with those who were not receiving antineoplastic treatment.

    View this table:
    Table 5

    Significant associations between patient characteristics and changes in symptom/problem scores from baseline to follow-up obtained from multiple linear regression analyses with backwards stepwise selection

    For the remaining five scales with significantly different changes over time between subgroups, that is, physical functioning, nausea/vomiting, appetite loss, quality of life and depression, no significant overall change over time was seen. Diagnosis was associated with change in appetite loss scores: patients with gallbladder and prostate cancer improved compared with other diagnoses (table 5). A reduction in nausea/vomiting scores was seen for patients living in a private residence compared with those living in others’ residence, and for patients living with others compared with the remaining cohabitation categories. A negative change in QOL scores was seen for patients living in others’ residence compared with those who lived in their private residence. A more positive change in physical functioning and depression scores was observed for patients in current antineoplastic treatment compared with those not in antineoplastic treatment.

    Discussion

    In this longitudinal study we obtained a high consent rate of 80% (201/250 patients). Although the difficulties of conducting a longitudinal study with patients with advanced cancer experiencing mental and physical deterioration are well known, we had a good retention of patients, as 88% of 201 patients who answered the questionnaires at baseline completed the study after 1 month. This retention is higher compared with what was observed in some previous studies, where 59%–65% of patients completed a second symptom assessment after 1 month in palliative care.3 4

    Our main findings were that patients reported moderate-to-severe levels of symptoms at admittance to palliative care in Chile. Importantly, emotional functioning, pain, sleeping difficulties, constipation and anxiety improved significantly after the first month of palliative care. Moreover, residence, cohabitation status, diagnosis and current antineoplastic treatment were associated with changes in S/P scores.

    At admittance to palliative care, we found that fatigue, pain and sleeping difficulties were the most prevalent S/Ps and had the highest mean scores. An earlier study in Chile also found that fatigue (83%) and pain (69%) were among the most prevalent symptoms reported in the FACT-G by 77 patients admitted to a single palliative care service.21 In previous studies from Europe and Northern America, fatigue and pain have also been reported among the most prevalent S/Ps by outpatients in palliative care, whereas sleeping difficulties was not.22–24

    In the current study, the prevalence of definite anxiety (11%) and definite depression (10%) reported on HADS (score ≥11), were lower compared with what was found in earlier studies with outpatients with advanced cancer, where the prevalence of definite anxiety ranged from 15% to 35%, and the prevalence of definite depression ranged from 11% to 24%.25–27 Chilean patients in palliative care may report lower prevalence of definite depression and anxiety because they were recently diagnosed with advanced cancer, and perhaps they were not fully aware of their prognosis and complications, especially if they were new patients who have been detected end-stage cancer and never received any prior antineoplastic treatment (about 52% of our study population). According to the Chilean Ministry of Health, patients must be admitted to palliative care and receive treatment no later than five working days from their diagnosis of advanced cancer.11

    Concerning the WISP instrument, patients reported 18 additional S/Ps not covered by the EORTC QLQ-C15-PAL at baseline. Most of these S/Ps were also voluntarily reported on an open-ended question in the only two studies we have identified using this approach in similar populations.28 29 The most prevalent additional S/Ps reported in our study were cough (reported by 5.5% of the participants), bloating (3.5%) and diarrhoea (2.5%); our prevalences were similar to those reported by 200 patients using an open-ended question in the study by Homsi et al 29 and slightly higher compared with the prevalence of cough (1.6%), diarrhoea (1.4%) and bloating (0.4%) reported in a previous study using WISP in 5447 patients admitted to specialist palliative care in Denmark.16 In line with the symptom severity reported on WISP in Denmark,16 70% of the additional S/Ps reported on WISP in our study were moderate to severe, confirming that patients voluntarily report symptoms when they are perceived as severe.29 30 This stresses the relevance of supplementing brief, standardised instruments such as EORTC QLQ-C15-PAL with WISP for an exhaustive symptom assessment.

    In the present study, the levels of symptoms found for fatigue, pain and sleeping difficulties were lower compared with what was found in previous European studies using the EORTC QLQ-C15-PAL or the EORTC QLQ-C30 questionnaires at the start of palliative care,3–5 20 27 31 but similar to one Canadian study.2 Some explanations of the better S/P mean scores in this study may be that patients had a better physical function than reported in previous studies,3–5 20 27 31 where outpatients had a good performance status (KPS range 50–100; median 90). This may reflect that some of the sickest patients were not included in this study, perhaps because they were not referred to palliative care, for example, only 62 (16%) of the 394 patients admitted to the four palliative care services had a lower KPS (<50). Another explanation could be that Chilean patients are on average referred earlier to palliative care compared with patients in other countries.

    During the first month of palliative care, we observed significant improvement in emotional functioning, pain, sleeping difficulties, constipation and anxiety. This is encouraging as it shows that, despite being in an advanced stage of their disease, and thus expected to get worse, the symptomatology of these Chilean patients improved following the initiation of palliative care. In agreement with our results, several studies from other parts of the world have found that pain, sleeping difficulties, emotional functioning and constipation improved significantly after 2–4 weeks of palliative care.3–6 In addition, two previous studies, one conducted in Italy using ESAS (The Edmonton Symptom Assessment Scale)32 and the other in Denmark using HADS,4 showed a significant reduction of anxiety after the first week of palliative care.

    In this study, a negative change in nausea/vomiting and QOL scores was seen for patients living in others’ residence compared with those who lived in their private residence. Perhaps this reflects that these patients received less help, for example, from their closest family, since some of them at the time of the study lived in nursing homes. While patients overall improved in emotional functioning during the first month of palliative care, patients living alone with children deteriorated. This may indicate that single parents are a particularly vulnerable group whose concerns, for example, about the future of their children, may increase even if they are admitted to palliative care. Furthermore, the worst baseline scores in anxiety, depression and physical functioning were observed in patients receiving current antineoplastic treatment compared with those not in treatment, which may explain why these patients had a positive change in these S/Ps, since it has been shown that symptoms with the highest baseline scores are more likely to have the greatest improvement.32 33

    Relatively few studies have investigated how patient characteristics were associated with changes in S/P scores following the initiation of palliative care, and found that female gender and older age were associated with symptom improvement,7–9 which differs from our results where sex and age were not significantly associated with change in the level of S/Ps.

    Strengths of this study include that it is the first to investigate S/Ps and QOL at the start of palliative care and over time among patients receiving palliative care in Chile, thus providing new knowledge of their symptomatology. Furthermore, patients’ symptomatology was systematically measured by PRO questionnaires such as the EORTC QLQ-C15-PAL and HADS, which are instruments widely used in palliative care34 and also validated in the Chilean population,35 36 and that we combined these instruments with the WISP.

    A limitation of the study was the small sample size, restricting the possibility to perform comparisons of the symptomatology between hospitals. Due to the large number of analyses performed on the association between different variables and symptomatology, some of the significant associations found in this study may have occurred by chance. Additionally, it was not possible to include patients from other types of services than outpatients, because most of the palliative care services did not have an inpatient unit and palliative home care was provided by other services/teams.

    In future research, it would be relevant to include more patients and palliative care services to get a broader overview of the current symptomatology of patients receiving palliative care in Chile. It would also be relevant to compare the symptomatology of patients receiving or not antineoplastic treatment and to study patients with other life-threatening diagnoses than cancer.

    Conclusions

    In this longitudinal study conducted in four Chilean palliative care services, patients reported moderate-to-severe levels of S/Ps at admittance to palliative care. The high performance status observed raises the important question of whether the most severely ill patients were less likely to be referred to palliative care. This should be further investigated. Emotional functioning, pain, sleeping difficulties, constipation and anxiety improved significantly during the first month of palliative care. Several sociodemographic and clinical variables were associated with changes in S/P scores. This information on patients’ symptomatology may guide clinicians to more effective interventions that can improve the quality of life of patients receiving palliative care.

    Abstract translation

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

    Data availability statement

    Data are available upon reasonable request. The data utilised in this study are available through the first author at the Palliative Care Research Unit, Department of Geriatrics and Palliative Medicine, Bispebjerg Hospital, University of Copenhagen. Restrictions apply to the availability of these data.

    Ethics statements

    Patient consent for publication

    Ethics approval

    Study approval was obtained from two Chilean local ethics committees: Comité de Ética Científico Adultos Servicio de Salud Metropolitano Oriente ID-CECSSMO27122016, Comité Ético Científico Servicio de Salud Metropolitano Sur Oriente ID-CECSSMSO17082017 (names in Spanish). Written informed consent for participation was obtained from all patients involved in this study.

    Acknowledgments

    We are very grateful to all the patients who participated in this study and willingly filled in the questionnaires. We would like to thank Dr María Angélica Becerra, Dr Daniel Leiva, Dr Rodrigo Fernández and Dr Magaly Sacta for their support to conducting this study in their palliative care services. The invaluable collaboration in the data collection of the psychologists Pedro Rojas and Scarlette Cisternas is highly appreciated.

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    Footnotes

    • Contributors All authors made substantial contributions to the design, analysis of data, critical revision and approved the publication, participating sufficiently to take responsibility for the content of this article.

    • Funding This study was supported by ‘Becas-Chile Scholarship’ from the Advanced Human Capital Program of the National Commission for Scientific and Technological Research-CONICYT. The scholarship was used for salary to the first author of this paper (LR-C).

    • Competing interests None declared.

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