Примечания
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Интересно, что эти жалобы сопоставляются с принципами ориентированного на пациента ухода, определенными Институтом Пикера в Оксфорде, который продвигает их на международном уровне. “Principles of Person Centred Care,” Picker, 2020, www.picker.org/about-us/picker-principles-of-person-centred-care/.
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Влияет ли на принятие решения только то, что мы видим, или же услышанное тоже имеет значение? Важна ли форма информирования? Доктор Эль-Джавахри провела исследование, в котором приняли участие пациенты на поздних стадиях рака. Эти пациенты либо только слышали информацию о СЛР, либо слышали информацию и смотрели видеоклип о данной процедуре. В первой группе пациентов (не смотревших видеоклип) 48% сказали, что согласны на проведение СЛР в случае необходимости. Среди пациентов, посмотревших видеоклип, только 20% согласились на проведение СЛР. Трехминутный видеоклип сыграл решающую роль в принятии решения. Это подтверждает слова: видеть (а не только слышать) — значит верить.
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Тридцать первая конференция Общества поведенческой медицины проходила в Сиэтле с 7 по 10 апреля 2010 года. Майкл Дифенбах, организатор конференции, изучает решения пациентов в отношении рака предстательной железы. Президентский симпозиум назывался «Будущее генетического понимания болезней и роль поведения в вопросах здоровья» (The Future of Genetic Understanding of Disease and the Role of Behavior in Health). Мой доклад назывался «(Не)понимание медицинской информации. Профессионалы в области здравоохранения и обычные люди» ((Mis)understanding Medical Information: Healthcare Professionals and Laymen Alike).
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При мутации эти гены не выполняют свою роль в защите клеток от повреждений ДНК. В результате в клетках с большей вероятностью развиваются дополнительные генетические изменения, которые могут привести к раку. “BRCA1 & BRCA2: Cancer Risk & Genetic Testing,” NIH National Cancer Institute, April 1, 2015, www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet.
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В исследовании приняли участие 263 человека, их средний возраст составил 40,24 года. Hanoch, Miron-Shatz, and Himmelstein, “Genetic Testing and Risk Interpretation,” 117. Средний возраст, в котором женщинам диагностируют рак молочной железы, в США составляет 61 год. Однако частота диагностирования рака молочной железы у женщин моложе 40 лет составляет менее 5%, а в возрасте 40 лет частота диагностирования начинает расти; самая высокая частота диагностирования рака молочной железы у женщин США наблюдается в возрасте старше 70 лет. “Age and Breast Cancer Risk,” Susan G. Komen Foundation, September 22, 2015, accessed July 22, 2016, www.komen.org/BreastCancer/GettingOlder.html.
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National Cancer Institute Fact Sheet, “Genetic Testing for BRCA1 and BRCA2: It’s Your Choice,” NIH National Cancer Institute, February 2002, accessed April 10, 2009, www.cancer.gov/cancertopics/factsheet/risk/brca. Пересмотренное, более позднее сообщение Национального института онкологии гласило: Рак молочной железы. Около 12% женщин в общей популяции заболевают раком молочной железы в течение жизни. В отличие от этого, согласно последним оценкам, у 55–65% женщин, унаследовавших опасную мутацию BRCA1, и примерно у 45% женщин, унаследовавших опасную мутацию BRCA2, рак груди разовьется к 70 годам. Рак яичников. У около 1,3% женщин в общей популяции в течение жизни разовьется рак яичников. В отличие от этого, согласно последним оценкам, у 39% женщин, унаследовавших опасную мутацию BRCA1, и у 11–17% женщин, унаследовавших опасную мутацию BRCA2, к 70 годам разовьется рак яичников. [“BRCA1 & BRCA2: Cancer Risk & Genetic Testing,” NIH National Cancer Institute, April 1, 2015, www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2.]
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Вариант 4 выбрали 45,2% участников. Hanoch, Miron-Shatz, and Himmelstein, “Genetic Testing and Risk Interpretation,” 118. Почти половина — 48,7% — выбрали правильный вариант ответа, вариант 1. Hanoch, Miron-Shatz, and Himmelstein, “Genetic Testing and Risk Interpretation,” 118. Согласно данным Национального института онкологии за 2016 год, среди женщин в общей популяции рак молочной железы развивается у 12% женщин, в то время как среди женщин с мутацией BRCA1 — от 55 до 65%. “BRCA1 & BRCA2: Cancer Risk & Genetic Testing,” NIH National Cancer Institute, April 1, 2015, accessed July 12, 2016, www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2.
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Isaac M. Lipkus, Greg Samsa, and Barbara K. Rimer, “General Performance on a Numeracy Scale Among Highly Educated Samples,” Medical Decision Making 21, no. 1 (February 2001): 28–36, doi:10.1177/0272989X0102100105.
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Группа с низким уровнем математической грамотности выбирала правильную интерпретацию примерно в 35% случаев; участники с высоким уровнем математической грамотности выбирали правильную интерпретацию в 64% случаев. Lipkus, Samsa, and Rimer, “General Performance on a Numeracy Scale Among Highly Educated Samples,” 118.
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Таким образом, 175 из них, или 84,5%, попали в одну из этих категорий. Hanoch, Miron-Shatz, and Himmelstein, “Genetic Testing and Risk Interpretation,” 119.
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Среди женщин, которые обладали определенными знаниями о заболевании, 59,4% выбрали правильный вариант 1. Hanoch, Miron-Shatz, and Himmelstein, “Genetic Testing and Risk Interpretation,” 120. Значительная часть опрошенных (40,1%) посчитали, что правильным был вариант 4. Hanoch, Miron-Shatz, and Himmelstein, “Genetic Testing and Risk Interpretation,” 120.
206
Angela Fagerlin et al., “Measuring Numeracy Without a Math Test: Development of the Subjective Numeracy Scale,” Medical Decision Making 27, no. 5 (September/October 2007): 681–695 and 672–680, doi:10.1177/0272989X07304449.
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Мы с Майклом Дифенбахом провели это исследование, но не опубликовали результаты.
208
Andrew J. Barnes et al., “Tailoring Risk Communication to Improve Comprehension: Do Patient Preferences Help or Hurt?” Health Psychology 35, no. 9 (2016): 1007–1016, doi:10.1037/hea0000367.
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Jonathan J. Rolison, Yaniv Hanoch, and Talya Miron-Shatz, “What Do Men Understand About Lifetime Risk Following Genetic Testing? The Effect of Context and Numeracy,” Health Psychology 31, no. 4 (2012): 530–533, doi:10.1037/a0026562.
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Ke Zu and Edward Giovannucci, “Smoking and Aggressive Prostate Cancer: A Review of the Epidemiologic Evidence,” Cancer Causes and Control 20, no. 10 (2009): 1799–1810, doi:10.1007/s10552–009–9387-y. Мутации BRCA и их влияние на риск развития рака предстательной железы изучены не так подробно, как мутации BRCA и их влияние на риск развития рака молочной железы. Однако, согласно исследованию, опубликованному в British Journal of Cancer, совокупный риск развития рака предстательной железы у мужчин к 70 годам в семьях с мутацией BRCA2 оценивается в 7,5%. Еще менее ясно, влияет ли мутация BRCA1 на риск развития рака предстательной железы. Ephrat Levy-Lahad and Eitan Friedman, “Cancer Risks Among BRCA1 and BRCA2 Mutation Carriers,” British Journal of Cancer 96, no. 1 (January 15, 2007): 11–15, doi:10.1038/sj.bjc.6603535. Одно популяционное исследование показало, что у курильщиков, мужчин, которые курят более сорока лет, и мужчин, имеющих стаж курения более сорока пачко-лет, риск развития рака предстательной железы увеличивается на 40–60% по сравнению с некурящими. Lora A. Plaskon et al., “Cigarette Smoking and Risk of Prostate Cancer in Middle-Aged Men,” Cancer Epidemiology, Biomarkers and Prevention 12 (July 2003): 604–609.
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Несмотря на то что развитию рака предстательной железы способствуют и мутации гена BRCA, и курение, цифры в наших утверждениях были немного неточными, поскольку нашей целью было не информирование, а скорее, проверка гипотезы.
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Возраст наших участников варьировался от 46 до 81 года, средний возраст составил 59,47 года, и 47,5% участников сдали анализ на онкомаркер с целью выявления рака предстательной железы. Rolison, Hanoch, and Miron-Shatz, “What Do Men Understand About Lifetime Risk Following Genetic Testing?” 531; D. J. Bowen et al., “Prostate Cancer Screening and Informed Decision-Making: Provider and Patient Perspectives,” Prostate Cancer and Prostatic Diseases 14, no. 2 (2011): 155–161. Почти половина участников нашего исследования проходили обследование на выявление рака предстательной железы, что сопоставимо с более крупными исследованиями.
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В контексте генетической предрасположенности менее 40%, а именно 37,9% мужчин, выбрали правильный вариант 1. В контексте курения 37,4% участников выбрали этот вариант. Rolison, Hanoch, and Miron-Shatz, “What Do Men Understand About Lifetime Risk Following Genetic Testing?” 532.
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Odette Wegwarth and Gerd Gigerenzer, “US Gynecologists’ Estimates and Beliefs Regarding Ovarian Cancer Screening’s Effectiveness 5 Years After Release of the PLCO Evidence,” Scientific Reports 8, no. 1 (2018): 1–9.
216
Sushmita Gordhandas et al., “Hormone Replacement Therapy After Risk Reducing Salpingo-oophorectomy in Patients with BRCA1 or BRCA2 Mutations: A Systematic Review of Risks and Benefits,” Gynecologic Oncology 153, no. 1 (2019): 192–200; C. Marchetti et al., “Hormone Replacement Therapy After Prophylactic Risk-Reducing Salpingo-oophorectomy and Breast Cancer Risk in BRCA1 and BRCA2 Mutation Carriers: A Meta-Analysis,” Critical Reviews in Oncology/Hematology 132 (2018): 111–115.
217
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Реал говорит о существовании вероятностной погрешности, возникающей в результате краткосрочных расчетов или усеченной выборки: шмели в значительной степени опираются на сведения о первых попавшихся цветах. Утешает тот факт, что шмели тоже ошибаются.
220
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Работа Космидес и Туби занимает семьдесят три страницы. Студенты приходят в ужас, когда я задаю ее изучить. Но потом они становятся новыми сторонниками частотного подхода.
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Cosmides and Tooby, “Are Humans Good Intuitive Statisticians After All?” 13.
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Cosmides and Tooby, “Are Humans Good Intuitive Statisticians After All?” 1 (emphasis added).
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Ulrich Hoffrage et al., “Representation Facilitates Reasoning: What Natural Frequencies Are and What They Are Not,” Cognition 84, no. 3 (2002): 343–352, doi:10.1016/s0010–0277(02)00050–1; Samuel Lindsey, Ralph Hertwig, and Gerd Gigerenzer, “Communicating Statistical DNA Evidence,” Jurimetrics 43, no. 2 (2003): 147–163. See also Gerd Gigerenzer and Ulrich Hoffrage, “How to Improve Bayesian Reasoning Without Instruction: Frequency Formats,” Psychological Review 102, no. 4 (1995): 684–704, doi:10.1037/0033–295x.102.4.684; Ulrich Hoffrage et al., “MEDICINE: Communicating Statistical Information,” Science 290, no. 5500 (2000): 2261–2262, doi:10.1126/science.290.5500.2261.
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Число 10 тысяч было выбрано для того, чтобы получить число достаточно большое, которое позволило бы избежать включения в группу половины человека. Такое бы произошло, если бы гипотетическая группа включала в себя 1000 человек.
227
Talya Miron-Shatz et al., “Presentation Format Affects Comprehension and Risk Assessment: The Case of Prenatal Screening,” Journal of Health Communication 14, no. 5 (2009): 439–450, doi:10.1080/10810730903032986.
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Cara L. Cuite et al., “A Test of Numeric Formats for Communicating Risk Probabilities,” Medical Decision Making 28, no. 3 (2008): 377–384, doi:10.1177/0272989x08315246.
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Если вам интересно подробнее изучить визуальный формат представления информации, см. Jessica S. Ancker et al., “Design Features of Graphs in Health Risk Communication: A Systematic Review,” Journal of the American Medical Informatics Association 13, no. 6 (2006): 608–618, doi:10.1197/jamia.m2115; Isaac M. Lipkus, “Numeric, Verbal, and Visual Formats of Conveying Health Risks: Suggested Best Practices and Future Recommendations,” Medical Decision Making 27, no. 5 (2007): 696–713, doi:10.1177/0272989x07307271.
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Были некоторые различия в формулировке писем, отчасти отразившиеся на разнице представления информации. Но основное различие, насколько нам было известно, заключалось в том, как в письмах были представлены вероятности.
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Точные цифры таковы: 36% участников информация была представлена в формате 1:181, 55% участников — визуально и 67% участников — в формате частот.
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Miron-Shatz et al., “Presentation Format Affects Comprehension and Risk Assessment.”
233
Мы с Джеффом познакомились более десяти лет назад, на первой летней школе по принятию медицинских решений в Дартмутском колледже, и было приятно снова встретиться с ним через Яша. Мне нравится, что Джефф отвечал как ученый, каковым он и является, а не как маркетолог, которым он не является.
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Согласно статье из англоязычной «Википедии», существуют и альтернативные переводы: “There are many Arabic editions, e.g. Nahj al-balagha, Daral-kutub al-῾ilmiyya, Beirut, 2007, p. 358. This is Askari Jafri’s translation from an unattributed online edition. Alternative translations of the main citation are possible: ‘knowledge is belief which is acted upon’ (Al-Hassanain), ‘knowledge is a religion to be followed’ (French translation, Beirut 2004), or even ‘the intellection of knowledge is an empowerment’ (Acevedo, 2019).” Wikipedia, s.v. “Scientia Potentia Est,” note 2, accessed March 9, 2020, https://en.wikipedia.org/wiki/Scientia_potentia_est.
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Barry Schwartz, The Paradox of Choice: Why Less Is More (New York: Ecco, 2004). (Переведена на русский язык: Шварц Б. Парадокс выбора. Как мы выбираем, и почему «больше» значит «меньше». М.: Добрая книга, 2005.)
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В среднем пациенты принимали препараты в течение 3,5 года.
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Jason Abaluck and Jonathan Gruber, “Choice Inconsistencies Among the Elderly: Evidence from Plan Choice in the Medicare Part D Program,” American Economic Review 101, no. 4 (2011): 1180–1210.
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256
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