Wednesday, January 14, 2009


Some ramblings on recent papers piling up from JAMA & Journal of Clinical Oncology, following two tenuous threads of 'whopping' and 'modest but measurable.'

JAMA has a brief discussion of allowing terminally ill patients access to experimental drugs (written in the context of the 'Abigail Alliance' ruling see here & multiple posts here). The commentary is not about the Abigail decision(s) per se - about whether patients have the right to obtain experimental drugs - but more a practical discussion of how best to allow patients access - balancing interests, minimizing exploitation, etc.

JAMA also continues its 'perspectives on care at the close of life' series with a review of agitation and delirium at the end of life. Nicely done & good for the teaching file.

Continuing on with JAMA - a randomized trial of deep-brain stimulation vs. best medical therapy for patients with Parkinson's disease has been published. I am in no position to be a good judge of the clinical import of the findings - the major outcome evaluated was time spent in the 'on' state without significant dyskinesias as measured by self-reported patient motor diaries (which seems a somewhat troubling measurement tool particularly given that this was not a blinded study as patients knew whether they had hardware in their brains or not). Patients who received DBS had substantially more 'good motor function' hours a day (4.5 overall) than the best medical therapy patients (which sounds pretty good to me), although at a cost. A whopping 40% had serious adverse events due to the surgery (infections, etc.), and even at 6 months there were some ongoing trade-offs (some increased depression, more falls, mild cognitive decrements) in the DBS patients. I mention the study in large part because interventions like this (up front risky/invasive, costly device therapies/interventions which however may improve either longevity or quality of life in a substantial number of patients - think LVADs) continue to become more common, our patients with highly morbid and/or life-limiting diseases are going to be facing decisions about these interventions more and more (whether to try them, managing complications from them, struggling with considering stopping them), and palliative care folks will be called upon more and more to help patients with those decisions.

JCO recently had a look at the natural history of bisphosphonate associated osteonecrosis of the jaw in multiple myeloma patients. A whopping 26% of patients did not heal over the course of the study (sufficient patients are still enrolled and being followed such that the median follow-up time has not yet been reached: minimum follow-up has been 3.2 years for the cohort).

also has another study looking at the quality of life impact of prophylactic whole brain radiation for patients with extensive stage small cell lung cancer (yes, at least on a time frame of 3 months, it has a modest but measurable impact on health related quality of life for the worse).

Finally, there's a fascinating randomized (routine-care-controlled) study involving giving advanced lung cancer outpatients a quality of life diary (they were asked to fill out a QOL questionnaire once a week and were encouraged to bring concerns to their providers). They found that those who were given the diary had, yes, modest but measurable decrements in their health related quality of life. The diary, if it did anything, seemed to make the patients feel worse. Most diary patients didn't however share their concerns, questionnaire results, etc. with their providers. It's a fascinating study, and if you believe the results a good warning - giving patients these measurement tools without any system for responding to them, any monitoring or routine evaluation of the patients' questionnaire responses, may actually make them feel worse.

It seems we clinicians are stuck in the unfortunate position of having to ask our patients how they are doing.....

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