Baseline and premorbid assessments
We neuropsychologists love it when patients come to us with old psychological assessment data - it allows us to know what the person was like before something happened to their brain, and it allows us to measure change over time, if similar tests are used. We call it premorbid data, meaning pre-injury. It's particularly valuable in cases of people with abilities at either end of the spectrum, because there's a tendency to underestimate the premorbid abilities of very intelligent people, and to overestimate the prior abilities of below-average people. We have equations that estimate a person's premorbid abilities based on their age, gender, ethnicity, education, occupation, and other factors, but these are prone to error, and are not as good as a thorough baseline assessment from a time before the person had a brain condition.
In 1983, when I was 16, Mum and Dad paid for my sister and I to undergo an assessment with a firm of organizational psychologists in Melbourne called Chandler and McLeod. My friend Libby Sculthorpe had
benefited from their career advice, and I was vacillating between wanting to do medicine, art and music (just for the joy of it), and something to help save the planet from global warming. I wanted to do medicine to
help people, but hated chemistry, and everyone I knew who wanted to do medicine seemed to want to do it because their father had done it, or to make money, or to get the title Doctor, but not to help people. I thought I had the wrong motivation, but found that hard to believe. I had the idea (I was only 16) that I could combine my love of travel and the wide open spaces with medicine and work with the Royal Flying Doctor Service, but my older cousins, who had worked in the mines and mining towns in WA, did their best to deter me from studying medicine, saying that women were treated badly out there, that Med was hard, that it would be a hard life.
We did the testing in the September school holidays, just after a one-week school trip from Alice Springs to Melbourne via Ayers Rock, Coober Pedy, and Adelaide. My sister and I still had dust from camping in our clothes, and felt quite out of place wearing our Red Centre gear in some fancy rooms in Kew. We were tested over a couple of days (yes, days) on a range of intelligence (?Stanford-Binet, Mazes, problem-solving), aptitude (clerical), personality, and vocational interest tests (the latter were so transparent, it was hard not to rig the answers). On attending for feedback, the psychologist seemed surprised that the results didn't match the impression she had gained from our unfashionable clothing and grungy appearance. (1983 was a very bad year for my hair. I don't know what possessed me to try to make it stand up on top (Duran Duran?), but it
was terrible).
The report, which is somewhere in our attic, said all of my scores on a range of intelligence, problem-solving, aptitude, clerical-skil, and other tasks were extremely high for my age group (95th - 99th percentile), which meant I would be able to do just about anything I wanted to, career wise. She said that careers in medicine, architecture, and science, would be open to me. Given my strong interests in music, art, English, humanities, biology, medicine, and helping others, she said that if I really didn't want to do medicine, perhaps I could consider a career in architecture ("which was becoming increasingly client-focused"), or clinical neuropychology, of which I hadn't heard. She said there was one course, at the University of Melbourne: I would have to do an honours degree in psychology, followed by a 2-year Masters or PhD in Clinical Neuropsychology. The honours degree could be in Arts or Science, which would allow me to indulge my interests in the arts and humanities with my interests in medicine without chemistry (via neuropsych) into a career that would help people. And it would take a minimum of 6 years of full-time study, compared to 7 at that time for Medicine.
The thought of leaving Tasmania for the anonymity of Melbourne was exciting. I would just be Fiona Bardenhagen, not "a Bardenhagen from Lilydale," linked inextricably in Northern Tasmania to Dad's large extended family, which the general store (set up in 1888 by the two original immigrant brothers, Luder and Wilhelm), a saw mil (set up by Granddad, Harvey Vernon Bardenhagen(HVB)), a petrol station (Est. HVB, 1925), and the school-bus run in a small town north of Launceston, as well as many uncles, aunts, and cousins in education and business around the north of the state. I'd be just me in Melbourne. No-one would know or remember me from school, and I'd able to forge my own identity, to find out who I was, away from all the assumptions of strangers. How liberating!
I found my WAIS-IV and WMS-IV results from 2009 the other day. One of my former students had kindly agreed to put me through the tests when they were released in Australia, before I had done them. We did it over a couple of weekends at her house - I always like to have the experience of being on the patient' s side of the testing, so I can know what it's like for them to go through the new tests. Of course, most of our tests are modified versions of the old ones, so there's a big advantage to a psychologist, who knows the answers to the old questions, and knows the strategies for the new items, but sometimes there are completely new subtests or items that allow the experienced psychologist to get an idea of how they're faring on tests of memory or cognition. In most of the new WAIS-IV and WMS-IV, that didn't apply. There were a few completely new subtests, but they loaded with old subtests so that my index and IQ scores couldn't really be taken as a measure of my true abilities - too much prior knowledge and practice effects. So when it said my WAIS-IV IQ and my General Abililty Index were both over the 99.9th percentile, I thought this was probably an overestimation, that I wasn't entitled to those scores, that they were due to my familiarity with the tests predecessors over the past 20 years - I had been tested by other students on the WAIS-R and WAIS-III in the past, but hadn't got to see or keep my scores, and was sure I hadn't done so well. I forgot that my abilities had been over the 95th percentile for my age in 1983. In hindsight, maybe the overestimation was 5-10 percentile points.
Thanks for reading. Feel free to comment or email.
X
I found my WAIS-IV and WMS-IV results from 2009 the other day. One of my former students had kindly agreed to put me through the tests when they were released in Australia, before I had done them. We did it over a couple of weekends at her house - I always like to have the experience of being on the patient' s side of the testing, so I can know what it's like for them to go through the new tests. Of course, most of our tests are modified versions of the old ones, so there's a big advantage to a psychologist, who knows the answers to the old questions, and knows the strategies for the new items, but sometimes there are completely new subtests or items that allow the experienced psychologist to get an idea of how they're faring on tests of memory or cognition. In most of the new WAIS-IV and WMS-IV, that didn't apply. There were a few completely new subtests, but they loaded with old subtests so that my index and IQ scores couldn't really be taken as a measure of my true abilities - too much prior knowledge and practice effects. So when it said my WAIS-IV IQ and my General Abililty Index were both over the 99.9th percentile, I thought this was probably an overestimation, that I wasn't entitled to those scores, that they were due to my familiarity with the tests predecessors over the past 20 years - I had been tested by other students on the WAIS-R and WAIS-III in the past, but hadn't got to see or keep my scores, and was sure I hadn't done so well. I forgot that my abilities had been over the 95th percentile for my age in 1983. In hindsight, maybe the overestimation was 5-10 percentile points.
Looking at the index scores, there was a bit of variability:
Verbal Comprehension (VCI): 143 (but lots of familiar test items. Can't remember how many new items)
Subtests (age-scaled score, %ile rank):
Similarities 17, 99,
Vocab 18, 99.6;
Information 16, 98.
I didn't feel I was entitled to those scores, having given the tests many times and knowing most of the answers.
Perceptual Reasoning (PRI): 148 (lots of familiar items again, 2/4 new subtests)
Subtests (age-scaled score, %ile rank):
Block Design 19, 99.9 (easy peasy after giving it for 19 years
Matrix Reasoning 19, 99.9 (I love this test, the new items were fun and challenging)
Visual Puzzles 17, 99 (a new subtest, lots of fun)
Figure Weights 16, 98 (new subtest, a little challenging, but fun)
Working Memory (WMI): 139
Subtests (age-scaled score, %ile rank):
Digit Span 17, 99 (know most of these from memory)
Arithmetic 17, 99 (ditto, only a few new items)
Processing Speed (PSI): 124
Subtests (age-scaled score, %ile rank):
Symbol Search 16, 98 (familiar task)
Coding 13, 84 (I felt like a tortoise doing this, when I should have been like a hare - I had all the symbols in my memory, but I just couldn't write them as quickly as expected)
Cancellation 13, 84 (a new task, was surprised that I was slow at this too)
There were no clinically significicant differences between the various WAIS-IV index scores (no baserates <0.05, lowest was 14%). Coding was a relative weakness compared to the overall mean of subtest scores (baserate 5-10%). Should this have been a red flag to me? Why was I so slow on a very familiar task, especially when my clerical speed at age 16 was at the 99th percentile? I attributed it to age and fatigue. Now I know it might have been because there was a tumour growing in my brain.
My scores on the Wechsler Memory Scale-IV are also interesting in hindsight.
Auditory Memory (AMI): 137 (99%ile)
Visual Memory (VMI): 153 (>99%ile)
Visual Working Memory (VWMI): 109 (73%ile)
Immediate Memory (IMI): 148 (99.9%ile)
Delayed Memory (DMI): 147 (99.9%ile)
Subtests (age-scaled score, %ile rank):
Logical Memory I: 18, 99.6; LMII: 19, 99.6 (unfair advantage, knowing the stories from memory)
Verbal Paired Associates I: 16, 98; VPAII: 11, 63 (only 2/4 trials of VPAI given because the test was so boring and familiar, even with new items, missed two pairs on VPAI, didn't get them on VPAII, so probably an underestimate of my VPAII score)
Designs I: 19, 99.9; Designs II: 17, 99 (new subtest, lots of fun for my visually-oriented brain)
Visual Reproduction I: 15, 95; VRII: 19, 99.9 (old material, unfair advantage)
Spatial addition: 13, 84 (new subtest, found it difficult - contributes to VWMI score)
Symbol span: 10, 50 (new version of old subtest. I feel surprised at this score, which contributes to VWMI, as I've never had trouble administering the test, but then I had a strategy for test administration, which was hard to apply to the new stimulus layout)
I remember being frustrated that I didn't get better than an age-scaled score of 13 (75th %ile) on digit-symbol coding, since I had the symbols almost memorised from years of scoring the test. I thought I should have blitzed it - I was getting scores over the 90th percentile for other tasks, some of them new to me, so why not that one? The other puzzling thing was a clinically significant weakness on the VWMI. I found the two tests that made up the Index very difficult, and only scored in the average range. The difference between my WMS-IV ViWMI and WAIS-IV Verbal Working Memory Index was clinically significant (occurring in <1% of the standardization sample), and was worse than expected than from my General Ability Index, but I attributed that to prior experience with the Verbal WMI and GAI tasks artificially boosting my scores on those indices. I thought that my weakness on the visual working memory index must just have been a sign of how difficult the task was, or measurement error, or the tendency of people with above-average abilities to regress to the mean on some tests - it's hard for people to be above average on everything. The higher a person's scores, the more likely there will be some scatter, and I thought my Digit Symbol and VWMI scored represented scatter, or sleep deprivation, or some strange effect of being tested by a friend.
The baserate of the difference between my actual and predicted VisualWMI was <1%, that is, it occurred in less than 1 in 100 people in the standardization sample. But that was using the GAI to predict my scores, and I thought that the GAI probably overestimated my abiliies. And I forgot about my testing from 1983, which showed test results above the 95th percentile for my age, including processing speed and clerical skill. The latter was above the 99th percentile. A drop to the 75th percentile should have struck me as significant, especially given my familiariity with the the task. The scores also showed that my Visual WMI was significantly weaker than expected from my PRI and Verbal WMI. It all makes perfect sense now.
I fell for the trap of underestimating the premorbid test scores of an above-average individual, even though I had premorbid data that would have demonstrated significant changes. Should I have sought a second opinion? Would anything have changed? Did I have a clinical history to suggest there were problems? Only recurrent right-sidede positional headaches that were almost always accompanied by a postnasal drip that responded to antibiotics and seeemed to fit the profile of sinus headaches. A bit of fatigue, irritability, disturbed sleep, difficulty answering questions when driving (divided attention) - nothing that other working mums didn't relate to. I did, sometimes, get stumped when doing presentations and came to very visual slides - it would often put me off my pace and it would take me a while to make sense of them. It happened most recently a week or two before my brain tumours were found, when I was giving a talk about neuropsychology for an APS careers night at UTas, and I put up a slide with a number of pictures of brain scans. One, ironically, was of a GBM, and I couldn't remember what it was. Life seems full of ironies like that.
Despite having a tumour growing in my brain, I've achieved a reasonable amount in the last few years. In 2009, I helped Simon Crowe organise a successful CCN conference in Melbourne. Our family moved to my home state of Tassie in 2010, and I started a new job as the first neuropsychologist at LGH. I became CCN chair in 2011, and feel I helped the national committee to achieve some important developments and directions. In 2012 my father passed away, which devastated me, but I rallied and I organised a very successful conference here in Launceston, which started the week my dear cousin Marita finally lost her struggle with cervical cancer. If I'd been diagnosed with the GBM and breast cancer earlier, I wouldn't have been able to do, or cope, with those things. Not that the CCN is as important as my life and my family, but they were things that contributed to the continued professional development of other neuropsychologists, and would have had flow-on effects to their patients and families. And they were very important to me. I can't go back in time and investigate my headaches differently. What's done is done, and we have to make the best of it,
I have a strong faith that everything is happening at a certain time for a certain reason, and that I just need to get through each moment without succumbing to fear, which can be a dark and all-encompassing gullet that could suck me to pits of despair. I broke out of it yesterday morning by facing the sunlight and embracing the golden light of hope. Hope will always be there.
Verbal Comprehension (VCI): 143 (but lots of familiar test items. Can't remember how many new items)
Subtests (age-scaled score, %ile rank):
Similarities 17, 99,
Vocab 18, 99.6;
Information 16, 98.
I didn't feel I was entitled to those scores, having given the tests many times and knowing most of the answers.
Perceptual Reasoning (PRI): 148 (lots of familiar items again, 2/4 new subtests)
Subtests (age-scaled score, %ile rank):
Block Design 19, 99.9 (easy peasy after giving it for 19 years
Matrix Reasoning 19, 99.9 (I love this test, the new items were fun and challenging)
Visual Puzzles 17, 99 (a new subtest, lots of fun)
Figure Weights 16, 98 (new subtest, a little challenging, but fun)
Working Memory (WMI): 139
Subtests (age-scaled score, %ile rank):
Digit Span 17, 99 (know most of these from memory)
Arithmetic 17, 99 (ditto, only a few new items)
Processing Speed (PSI): 124
Subtests (age-scaled score, %ile rank):
Symbol Search 16, 98 (familiar task)
Coding 13, 84 (I felt like a tortoise doing this, when I should have been like a hare - I had all the symbols in my memory, but I just couldn't write them as quickly as expected)
Cancellation 13, 84 (a new task, was surprised that I was slow at this too)
There were no clinically significicant differences between the various WAIS-IV index scores (no baserates <0.05, lowest was 14%). Coding was a relative weakness compared to the overall mean of subtest scores (baserate 5-10%). Should this have been a red flag to me? Why was I so slow on a very familiar task, especially when my clerical speed at age 16 was at the 99th percentile? I attributed it to age and fatigue. Now I know it might have been because there was a tumour growing in my brain.
My scores on the Wechsler Memory Scale-IV are also interesting in hindsight.
Auditory Memory (AMI): 137 (99%ile)
Visual Memory (VMI): 153 (>99%ile)
Visual Working Memory (VWMI): 109 (73%ile)
Immediate Memory (IMI): 148 (99.9%ile)
Delayed Memory (DMI): 147 (99.9%ile)
Subtests (age-scaled score, %ile rank):
Logical Memory I: 18, 99.6; LMII: 19, 99.6 (unfair advantage, knowing the stories from memory)
Verbal Paired Associates I: 16, 98; VPAII: 11, 63 (only 2/4 trials of VPAI given because the test was so boring and familiar, even with new items, missed two pairs on VPAI, didn't get them on VPAII, so probably an underestimate of my VPAII score)
Designs I: 19, 99.9; Designs II: 17, 99 (new subtest, lots of fun for my visually-oriented brain)
Visual Reproduction I: 15, 95; VRII: 19, 99.9 (old material, unfair advantage)
Spatial addition: 13, 84 (new subtest, found it difficult - contributes to VWMI score)
Symbol span: 10, 50 (new version of old subtest. I feel surprised at this score, which contributes to VWMI, as I've never had trouble administering the test, but then I had a strategy for test administration, which was hard to apply to the new stimulus layout)
I remember being frustrated that I didn't get better than an age-scaled score of 13 (75th %ile) on digit-symbol coding, since I had the symbols almost memorised from years of scoring the test. I thought I should have blitzed it - I was getting scores over the 90th percentile for other tasks, some of them new to me, so why not that one? The other puzzling thing was a clinically significant weakness on the VWMI. I found the two tests that made up the Index very difficult, and only scored in the average range. The difference between my WMS-IV ViWMI and WAIS-IV Verbal Working Memory Index was clinically significant (occurring in <1% of the standardization sample), and was worse than expected than from my General Ability Index, but I attributed that to prior experience with the Verbal WMI and GAI tasks artificially boosting my scores on those indices. I thought that my weakness on the visual working memory index must just have been a sign of how difficult the task was, or measurement error, or the tendency of people with above-average abilities to regress to the mean on some tests - it's hard for people to be above average on everything. The higher a person's scores, the more likely there will be some scatter, and I thought my Digit Symbol and VWMI scored represented scatter, or sleep deprivation, or some strange effect of being tested by a friend.
The baserate of the difference between my actual and predicted VisualWMI was <1%, that is, it occurred in less than 1 in 100 people in the standardization sample. But that was using the GAI to predict my scores, and I thought that the GAI probably overestimated my abiliies. And I forgot about my testing from 1983, which showed test results above the 95th percentile for my age, including processing speed and clerical skill. The latter was above the 99th percentile. A drop to the 75th percentile should have struck me as significant, especially given my familiariity with the the task. The scores also showed that my Visual WMI was significantly weaker than expected from my PRI and Verbal WMI. It all makes perfect sense now.
I fell for the trap of underestimating the premorbid test scores of an above-average individual, even though I had premorbid data that would have demonstrated significant changes. Should I have sought a second opinion? Would anything have changed? Did I have a clinical history to suggest there were problems? Only recurrent right-sidede positional headaches that were almost always accompanied by a postnasal drip that responded to antibiotics and seeemed to fit the profile of sinus headaches. A bit of fatigue, irritability, disturbed sleep, difficulty answering questions when driving (divided attention) - nothing that other working mums didn't relate to. I did, sometimes, get stumped when doing presentations and came to very visual slides - it would often put me off my pace and it would take me a while to make sense of them. It happened most recently a week or two before my brain tumours were found, when I was giving a talk about neuropsychology for an APS careers night at UTas, and I put up a slide with a number of pictures of brain scans. One, ironically, was of a GBM, and I couldn't remember what it was. Life seems full of ironies like that.
Despite having a tumour growing in my brain, I've achieved a reasonable amount in the last few years. In 2009, I helped Simon Crowe organise a successful CCN conference in Melbourne. Our family moved to my home state of Tassie in 2010, and I started a new job as the first neuropsychologist at LGH. I became CCN chair in 2011, and feel I helped the national committee to achieve some important developments and directions. In 2012 my father passed away, which devastated me, but I rallied and I organised a very successful conference here in Launceston, which started the week my dear cousin Marita finally lost her struggle with cervical cancer. If I'd been diagnosed with the GBM and breast cancer earlier, I wouldn't have been able to do, or cope, with those things. Not that the CCN is as important as my life and my family, but they were things that contributed to the continued professional development of other neuropsychologists, and would have had flow-on effects to their patients and families. And they were very important to me. I can't go back in time and investigate my headaches differently. What's done is done, and we have to make the best of it,
I have a strong faith that everything is happening at a certain time for a certain reason, and that I just need to get through each moment without succumbing to fear, which can be a dark and all-encompassing gullet that could suck me to pits of despair. I broke out of it yesterday morning by facing the sunlight and embracing the golden light of hope. Hope will always be there.
Thanks for reading. Feel free to comment or email.
X
