Morten Aagaard Petersen

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.

Multidimensional Computerized Adaptive Testing of the EORTC QLQ-C30: Basic Developments and Evaluations

AbstractObjective: Self-report questionnaires are widely used to measure health-related quality of life (HRQOL). Ideally, such questionnaires should be adapted to the individual patient and at the same time scores should be directly comparable across patients. This may be achieved using computerized adaptive testing (CAT). Usually, CAT is carried out for a single domain at a time. However, many HRQOL domains are highly correlated. Multidimensional CAT may utilize these correlations to improve measurement efficiency. We investigated the possible advantages and difficulties of multidimensional CAT. Study design and setting: We evaluated multidimensional CAT of three scales from the EORTC QLQ-C30: the physical functioning, emotional functioning, and fatigue scales. Analyses utilised a database with 2958 European cancer patients.Results: It was possible to obtain scores for the three domains with five to seven items administered using multidimensional CAT that were very close to the scores obtained using all 12 items and with no or little loss of measurement precision.Conclusion: The findings suggest that multidimensional CAT may significantly improve measurement precision and efficiency and encourage further research into multidimensional CAT. Particularly, the estimation of the model underlying the multidimensional CAT and the conceptual aspects need further investigations.

Are different groups of cancer patients offered rehabilitation to the same extent? A report from the population-based study “The Cancer Patient’s World”

PurposeThe number of cancer survivors is growing and cancer is now viewed as a chronic disease. This has highlighted the importance of providing adequate rehabilitation to prevent physical, psychological, and social sequelae of cancer. However, it is unclear whether those in need of rehabilitation are offered this.MethodsUsing patient–observer agreement and cognitive interviews, we validated a seven-item questionnaire designed to assess cancer patients’ perception of the sufficiency of the offered rehabilitation. A cross-sectional study among 2,202 Danish cancer patients affiliated with hospitals was carried out.ResultsThe questionnaire was well understood, indicating good validity. In the cross-sectional study, 1,490 patients (68%) participated. Up to 39% of cancer patients did not receive the physical rehabilitation they felt they needed. About half of those who had felt a need to talk to a psychologist were offered this. Insufficiency of other rehabilitation offers was reported by 10–24%. Age most consistently predicted insufficient rehabilitation; higher age predicted insufficient information about support from other sources (than hospital staff) and younger age predicted lack of help to manage symptoms, return to everyday life, and deal with financial and especially work-related consequences. We found no consistent signs of traditional social inequality in the perception of rehabilitation, but we observed some signs of social inequality for unemployed or divorced/separated patients.ConclusionsAge predicted sufficiency of the rehabilitation in two directions, possibly reflecting different needs in younger and older patients. When tailoring rehabilitation programs, it should be ensured that the different needs are met.

Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey

BackgroundSeriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences.MethodsIn a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers.ResultsA total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found.ConclusionsOverall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted.

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.

Differential item functioning (DIF) in the EORTC QLQ-C30: a comparison of baseline, on-treatment and off-treatment data.

AbstractIntroduction Differential item functioning (DIF) analyses can be used to explore translation, cultural, gender or other differences in the performance of quality of life (QoL) instruments. These analyses are commonly performed using “baseline” or pretreatment data. We previously reported DIF analyses to examine the pattern of item responses for translations of the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 QoL instrument, using only data collected prior to cancer treatment. We now compare the consistency of these results with similar analyses of on-treatment and off-treatment assessments and explore whether item relationships differ from those at baseline. Methods Logistic regression DIF analyses were used to examine the translation of each item in each multi-item scale at the three time points, after controlling for the overall scale score and other covariates. The consistency of results at the three time points was explored. Results For most EORTC QLQ-C30 subscales, the DIF results were very consistent across the three time points. Results for the Nausea and Vomiting scale varied the most across assessments. Discussion The results indicated that DIF analyses were stable across each time point and that the same DIF effects were usually found regardless of the treatment status of the respondent.

Test‐retest studies in quantitative sensory testing: a critical review

Quantitative sensory testing (QST) investigates the graded psychophysical response to controlled thermal, mechanical, electrical or chemical stimuli, allowing quantification of clinically relevant perception and pain thresholds. The methods are ubiquitously used in experimental and clinical pain research, and therefore, the need for uniform assessment procedures has been emphasised. However, varying consistency and transparency in the statistical methodology seem to occur in the QST literature. Sixteen publications, evaluating aspects of QST variability, from 2010 to 2012, were critically reviewed in detail. A considerable heterogeneity in the statistical evaluations of test‐retest data was demonstrated. The authors, using a secondary analysis of published data for didactic purposes, propose and present minimal requirements for reporting of test‐retest QST data.

Factors associated with Danish cancer patients’ return to work. A report from the population-based study ‘The Cancer Patient's World’

PURPOSE If patients facing difficulties in the process of returning to work after treatment of cancer could be identified, these patients could be assisted in the transition. This might help some patients to stay in work. We therefore assessed demographic and clinical factors associated with returning to work after a cancer diagnosis. MATERIALS AND METHODS In this cross-sectional survey, 1490 cancer patients who had been in contact with a hospital department during the past 12 months in three Danish counties responded to a mailed questionnaire. Factors associated with employment and return to work (i.e., working more than 0 h in the past month) respectively, were assessed in multivariate ordinal logistic regression models. RESULTS Of the 598 patients below age 65 who were employed at the time of diagnosis, 75% were still employed when answering the questionnaire at a median of 2.8 years after diagnosis and 63% were working. In multivariate analyses, younger and more recently diagnosed patients were more often employed. Patients diagnosed with lung or head and neck cancer were least likely to be employed and having returned to work. Advanced cancer at diagnosis was associated with loss of employment. Advanced cancer and being in active treatment were associated with not having returned to work. CONCLUSION A quarter of the patients had lost their employment probably resulting in economic consequences on the individual as well as at the societal level. The highest risk was observed for older patients and those diagnosed with lung or head and neck cancer.

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).