Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale.

BACKGROUND: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. AIM: To explore German- and English-speaking patients' views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. METHODS: Bi-national (United Kingdom/Germany) cognitive interview study using 'think aloud' and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. SETTING/PARTICIPANTS: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. RESULTS: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. 'mouth problems') and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding 'felt good about yourself') and discussing them from both languages' perspectives resulted in wider consideration of the items' meaning, enabling more detailed refinement. CONCLUSION: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages - to our knowledge the first such approach in palliative care - benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway.

Cognitive impairment after acute encephalitis: an ERP study.

Cognitive deficits are often observed during the acute stage of encephalitis. It is presumed, that they persist and influence the long-term outcome, but data are very limited. Forty-seven patients with a definite or highly probable diagnosis of acute encephalitis were identified through retrospective analysis and prospectively followed up 6-84 months after the acute illness. P3 was carried out by oddball auditory paradigm, and P3 latency was measured as a marker of cognitive impairment. Healthy people, who matched the patients in age, were used as controls (n = 39). Statistical group analysis revealed no significant difference of the P3 latency between the patient and the control group. However a subgroup analysis showed significant longer P3 latencies in patients with a more unfavorable functional outcome at the time of follow-up. Patients with Herpes simplex virus (HSV) encephalitis had also more often abnormal P3 values compared to other etiologic subgroups, potentially indicating a higher percentage of patients with unfavorable cognitive outcome in this subgroup.

Evaluating psycho-educational interventions for informal carers of patients receiving cancer care or palliative care: strengths and limitations of different study designs.

Despite evidence of negative psychological sequelae and unmet needs, there are few evaluated interventions for informal caregivers in cancer and palliative care. The aim of this article is to debate the strengths and limitations of randomized controlled trials (RCTs) and other designs that can be used to evaluate the effectiveness of these interventions. Psycho-educational interventions are used as example for this debate article, as a number of studies of various designs evaluating this type of intervention have been published. Systematic searching in Medline and the bibliography of a relevant systematic review identified five RCTs, one pre-test/post-test study with a control group and six one-group pre-test/post-test studies of psycho-educational interventions for caregivers. The methodological strengths and weaknesses were assessed. RCTs are seen as the gold standard, but can have important limitations in the context of carer intervention research, including biased recruitment and low generalizability, problems with blinding and attrition. Pre-test/post-test studies with a control group may be more feasible and more generalizable. Their crucial limitation is selection bias. Before-after studies are compromised by additional specific biases and therefore are the weakest of all discussed designs. After analysing the strengths and weaknesses of the mentioned study designs, this paper presents strategies to address the limitations of RCTs evaluating psycho-educational interventions for carers in cancer or palliative care.

Paraneoplastic Raynaud's phenomenon--good palliation after a multidisciplinary approach.

Paraneoplastic Raynaud's phenomenon is a rare complication of a number of different malignancies (carcinomas, sarcomas, lymphomas, and leukemias). We present a case of paraneoplastic Raynaud's phenomenon in a patient with non-small-cell lung cancer that was associated with significant morbidity, involved a multidisciplinary approach, and eventually responded to a specialized intervention (i.e., iloprost trometamol).