Durand Marie-Anne, Song Julia, Yen Renata West, Sepucha Karen, Politi Mary C, Dhage Shubhada, Rosenkranz Kari, Margenthaler Julie, Tosteson Anna N A, Crayton Eloise, Jackson Sherrill, Bradley Ann, O'Malley A James, Volk Robert J, Ozanne Elissa, Percac-Lima Sanja, Acosta Jocelyn, Mir Nageen, Scalia Peter, Ward Abigail, Elwyn Glyn
The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College, Lebanon, New Hampshire.
Division of General Internal Medicine, Massachusetts General Hospital, Boston, Massachusetts.
MDM Policy Pract. 2018 Nov 25;3(2):2381468318811839. doi: 10.1177/2381468318811839. eCollection 2018 Jul-Dec.
Breast cancer is the second most common malignancy in women. The Decision Quality Instrument (DQI) measures the extent to which patients are informed and involved in breast surgery decisions and receive treatment that aligns with their preferences. There are limited data on the performance of the DQI in women of lower socioeconomic status (SES). Our aims were to 1) examine (and if necessary adapt) the readability, usability, and acceptability of the DQI and 2) explore whether it captures factors important to breast cancer surgery decisions among women of lower SES (relevance). We conducted semistructured cognitive interviews with women of lower SES (based on insurance status, income, and education) who had completed early-stage breast cancer treatments at three cancer centers. We used a two-step thematic analysis with dual independent coding. The study team (including Patient Partners and a Community Advisory Board) reviewed and refined suggested changes. The revised DQI was presented in two focus groups of breast cancer survivors. We conducted 39 interviews. Participants found most parts of the DQI to be helpful and easy to understand. We made the following suggested changes: 1) added a glossary of key terms, 2) added two answer choices and an open text question in the goals and concerns subscale, 3) reworded the treatment intention question, and 4) revised the knowledge subscale instructions since several women disliked the wording and were unsure of what was expected. The readability, usability, acceptability, and relevance of a measure that was primarily developed and validated in women of higher SES required adaptation for optimal use by women of lower SES. Further research will test these adaptations in lower SES populations.
乳腺癌是女性中第二常见的恶性肿瘤。决策质量工具(DQI)衡量患者在多大程度上了解并参与乳腺癌手术决策,以及接受符合其偏好的治疗。关于DQI在社会经济地位较低(SES)女性中的表现的数据有限。我们的目的是:1)检查(必要时进行调整)DQI的可读性、可用性和可接受性;2)探讨它是否涵盖了对社会经济地位较低的女性乳腺癌手术决策重要的因素(相关性)。我们对在三个癌症中心完成早期乳腺癌治疗的社会经济地位较低的女性(基于保险状况、收入和教育程度)进行了半结构化认知访谈。我们采用了双独立编码的两步主题分析。研究团队(包括患者合作伙伴和社区咨询委员会)审查并完善了建议的更改。修订后的DQI在两个乳腺癌幸存者焦点小组中展示。我们进行了39次访谈。参与者发现DQI的大部分内容都很有帮助且易于理解。我们提出了以下建议更改:1)添加关键术语词汇表;2)在目标和关注点子量表中添加两个答案选项和一个开放式文本问题;3)重新措辞治疗意向问题;4)修订知识子量表说明,因为几位女性不喜欢措辞且不确定期望的内容。一种主要在社会经济地位较高的女性中开发和验证的测量工具,其可读性、可用性、可接受性和相关性需要进行调整,以便社会经济地位较低的女性能够最佳使用。进一步的研究将在社会经济地位较低的人群中测试这些调整。