Annette S. Strömgren

Self-assessment in Cancer patients referred to palliative care: A study of feasibility and Symptom epidemiology

Research in palliative care is considered difficult due to the poor health of patients. However, patient‐provided data are essential for a thorough description of patient symptomatology and for the evaluation of care.

Does the Medical Record Cover the Symptoms Experienced by Cancer Patients Receiving Palliative Care? A Comparison of the Record and Patient Self-Rating

The aim of this study was to investigate the extent to which the symptoms experienced by advanced cancer patients were covered by the medical records. Fifty-eight patients participated in the study. On the day of first encounter with our palliative care department, a medical history was taken, and on this or the following day, the patients completed the EORTC Quality of Life Questionnaire (EORTC QLQ-C30), Edmonton Symptom Assessment System (ESAS), and Hospital Anxiety and Depression Scale (HADS). The symptomatology reported in the patient-completed questionnaires was compared with the symptomatology mentioned by the physician in the medical record. The analysis revealed good concordance concerning pain, but most other symptoms or problems were reported much more often by patients than by their doctors. Reasons for these discrepancies are discussed. It is suggested that the doctors knowledge of the patients symptomatology might gain from more systematic screening and transfer of information from patient self-assessment questionnaires to the medical records.

Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records

To elucidate which symptoms or problems to measure when evaluating palliative care, we assessed the content validity of selected patient self-assessment questionnaires used to evaluate palliative care: the European Organization for Research and Treatment of Cancer-Quality of Life-Core 30 (EORTC QLQ-C30), the Edmonton Symptom Assessment System (ESAS), the Palliative Care Outcome Scale (POS), the McGill Quality of Life Questionnaire (MQOL) and the Memorial Symptom Assessment Scale (MSAS). The content of the questionnaires was compared against the symptoms and problems noted in the medical records of 171 consecutive cancer patients on their first admission to a department of palliative medicine. From the records, 63 different symptoms were listed. Two questionnaires covered almost all of the prevalent symptoms/problems: the EORTC QLQ-C30 covered 10 and the MSAS 11 of the 12 most frequent problems. Researchers selecting instruments for evaluating palliative care may use the present study and other reviews to examine to what degree a given selection of instruments cover the symptoms/problems targeted by palliative care physicians.

A longitudinal study of palliative care: patient-evaluated outcome and impact of attrition.

The current article evaluated the course of patient‐assessed symptomatology in specialized palliative care and tested for bias due to patient attrition in measures of initial symptomatology and treatment outcome.

Symptom recognition in advanced cancer. A comparison of nursing records against patient self-rating.

The aim of the study was to investigate the extent to which the symptoms experienced by advanced cancer patients were covered by the nursing records. On the day of the first contact with our palliative care department, a nursing record was taken, and on this or the following day, 56 patients filled in the questionnaires EORTC Quality of Life Questionnaire (EORTC QLQ‐C30), Edmonton Symptom Assessment System (ESAS), and Hospital Anxiety and Depression Scale (HADS). In each patient, the symptomatology reported in the patient‐completed questionnaires was compared with the symptomatology mentioned by the nurse in the nursing record. The analysis revealed good concordance concerning pain and poor physical functioning, but patients reported other symptoms or problems much more often than their nurses. Reasons for these discrepancies are discussed. It is suggested that the nurse’s knowledge of the patient’s symptomatology might gain from more systematic screening or from transfer of information from patient self‐assessment questionnaires to the nursing records.

Cooperating with a palliative home-care team : expectations and evaluations of GPs and district nurses

Background: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. Methods: GPs and district nurses received questionnaires at the start of home-care and one month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed-and open-ended questions was used. Results: Response rate was 84% (467/553). Benefits to patients were experienced by 91%, mainly due to improvement in symptom management, ‘security’, and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory. Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. Conclusion: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication initiated by the home-care team would enhance cooperation.

A randomised, multicentre clinical trial of specialised palliative care plus standard treatment versus standard treatment alone for cancer patients with palliative care needs: the Danish palliative care trial (DanPaCT) protocol

BackgroundAdvanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems.The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report palliative needs in a screening, will benefit from being referred to ‘early SPC’.Methods/DesignDanPaCT is a clinical, multicentre, parallel-group superiority trial with balanced randomisation (1:1). The planned sample size is 300 patients. Patients are randomised to specialised palliative care (SPC) plus standard treatment versus standard treatment. Consecutive patients from oncology departments are screened for palliative needs with a questionnaire if they: a) have metastatic cancer; b) are 18 years or above; and c) have no prior contact with SPC. Patients with palliative needs (i.e. symptoms/problems exceeding a certain threshold) according to the questionnaire are eligible. The primary outcome is the change in the patients’ primary need (the most severe symptom/problem measured with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)). Secondary outcomes are other symptoms/problems (EORTC QLQ-C30), satisfaction with health care (FAMCARE P-16), anxiety and depression (the Hospital Anxiety and Depression scale), survival, and health care costs.DiscussionOnly few trials have investigated the effects of SPC. To our knowledge DanPaCT is the first trial to investigate screening based ‘early SPC’ for patients with a broad spectrum of cancer diagnosis.Trial registrationCurrent controlled Trials NCT01348048

Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial.

Background: Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. Aim: To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. Setting/participants: The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient’s primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0–100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Results: Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (−4.9 points (95% confidence interval −11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. Conclusion: We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

Detailed statistical analysis plan for the Danish Palliative Care Trial (DanPaCT)

BackgroundAdvanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialized palliative care (SPC) could offer improvements. The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer will benefit from being referred to ‘early SPC’. DanPaCT is a multicenter, parallel-group, superiority clinical trial with 1:1 randomization. The planned sample size was 300 patients. The primary data collection for DanPaCT is finished. To prevent outcome reporting bias, selective reporting, and data-driven results, we present a detailed statistical analysis plan (SAP) for DanPaCT here.ResultsThis SAP provides detailed descriptions of the statistical analyses of the primary and secondary outcomes in DanPaCT. The primary outcome is the change in the patient’s ‘primary need’. The ‘primary need’ is a patient-individualised outcome representing the score of the symptom or problem that had the highest intensity out of seven at baseline assessed with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Secondary outcomes are the seven scales that are represented in the primary outcome, but each scale evaluated individually for all patients, and survival. The detailed description includes chosen significance levels, models for multiple imputations, sensitivity analyses and blinding. In addition, we discuss the patient-individualized primary outcome, blinding, missing data, multiplicity and the risk of bias.ConclusionsOnly few trials have investigated the effects of SPC. To our knowledge DanPaCT is the first trial to investigate screening based ‘early SPC’ for patients with metastatic cancer from a broad spectrum of cancer diagnosis.Trial registrationClinicaltrials.gov identifier: NCT01348048 (May 2011).

Pain characteristics and management of inpatients admitted to a comprehensive cancer centre: a cross-sectional study

This prospective, cross‐sectional study aimed to assess cancer pain and its management in an inpatient setting at a comprehensive cancer centre in Denmark.