Lise Pedersen

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.

Health related quality of life in a nationally representative sample of haematological patients

Objectives:u2002 Knowledge of health related quality of life of haematological patients is limited. This study aimed at investigating the prevalence and predictors of symptoms and problems in a representative sample of haematological patients in Denmark.

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.

Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems.

The aim of the study was to investigate the adequacy of help delivered by the healthcare system for 12 symptoms/problems in a national, randomly selected sample of advanced cancer patients in Denmark.

Development and initial validation of the Three-Levels-of-Needs Questionnaire for self-assessment of palliative needs in patients with cancer.

CONTEXTnTo improve palliative care, it is important that questionnaires accurately assess the needs of the patients. No questionnaire existed that combined three different and important approaches to needs assessment. We developed such a questionnaire, called the Three-Levels-of-Needs Questionnaire (3LNQ), based on literature searches. The 3LNQ measures 12 important needs with three different approaches when used as a supplement to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30): problem intensity, problem burden, and felt need.nnnOBJECTIVESnTo investigate the initial validity of the 3LNQ.nnnMETHODSnWe used a relatively new method that investigates whether the questionnaire has the same meaning for the patients as for the researchers. To do this, 74 patients with advanced cancer filled out the questionnaire and participated in an open-ended interview. The patients responses to the questionnaire before the interview were compared against the researchers responses based on the interviews. Items showing substantial agreement were accepted as valid without further analysis. For the remaining items, reasons for disagreements were analyzed qualitatively.nnnRESULTSnAll items on problem intensity, eight of 12 items on problem burden, and three of 12 items on felt need were accepted as valid because of high agreement. Analysis of the qualitative data concerning the remaining items showed that most disagreements did not indicate problems with the patients self-assessment. Instead, different causes for disagreements were elucidated, but these did not interfere with validity.nnnCONCLUSIONnThe 3LNQ appears to measure palliative needs comprehensively, and this initial validation showed satisfactory results. The analysis gave important insights into the patients perceptions of their own situations, into their expectations of the health care system, and into the complexity of needs assessment.

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

Effects of melatonin on physical fatigue and other symptoms in patients with advanced cancer receiving palliative care: A double‐blind placebo‐controlled crossover trial

Patients with advanced cancer often experience fatigue and other symptoms that negatively impact their quality of life. The current trial investigated the effect of melatonin on fatigue and other symptoms in patients with advanced cancer.

How does pain experience relate to the need for pain relief? A secondary exploratory analysis in a large sample of cancer patients

PurposeTo explore (1) the information obtained from related but conceptually different approaches to pain assessment and (2) the extent to which the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) can be used as a screening tool to predict patient-reported need for pain relief.MethodsCancer patients randomly sampled from 56 hospital departments were included. Questionnaire items assessed patients’ (a) pain experience using the EORTC QLQ-C30 pain scale and its two pain items separately (pain intensity and pain interference) and (b) pain burden and (c) need for pain relief using the Three-Levels-of-Needs Questionnaire (3LNQ).ResultsOf the 2364 patients contacted by mail, 1447 (61xa0%) completed the questionnaires. Among these, 51xa0% reported at least “a little” pain on the pain intensity item. The number of patients reporting pain to be a burden was similar, and pain experience and pain burden were highly correlated (correlation coefficients ranged from 0.85 to 0.91). Pain experience and pain burden were moderately correlated with the need for pain relief. A receiver-operating characteristic (ROC) curve analysis showed that the EORTC QLQ-C30 discriminated between patients with and without a need for pain relief to an acceptable degree (area under the curve (AUC) 0.73–0.77). The cut-point a little gave a sensitivity of 84xa0% and specificity of 59xa0% for the item “Have you had pain?” and a sensitivity of 72xa0% and a specificity of 72xa0% for the pain scale.ConclusionsThe majority of patients who experienced pain felt it to be a problem. Pain experience and pain burden were substantially related to need for pain relief, and the latter could be predicted from the EORTC QLQ-C30.