br seekers report not being adverse to inadvertently


seekers report not being adverse to inadvertently "bumping" into cancer information but find the information low in importance to them [16]. Guarded/active avoiders bypass cancer information altogether as it 6-NBDG is considered too distressing [16].
To my knowledge, such delineated cancer information-seeking preferences had never been comprehensively reported elsewhere. I subsequently sought to measure CISP through the development of a cancer information seeking preferences scale [30] with one global item asking respondents to identify the statement that best represented their personal preferences. In the context of the conduct of a large cancer patient survey, I subsequently included a CISP question to capture the prevalence of these distinct cancer information-seeking preferences. The results are presented herein. In addition, associations are documented in terms of how CISP relate to differential satisfaction with cancer care provided.
Initially, patients (N = 6555) received the survey by mail in quarterly waves across a 4-year span (2013–2017). A response rate of 39% resulted in a final sample of 2438 participants who completed and returned the survey. Of these, 2142 also answered the CISP question. Respondents were evenly distributed across the participating hospitals according to size of the institution and administered mailings (i.e., 36.2%, 38.1%, and 25.8%; see Procedures section for more details).
The study involved three University-affiliated cancer centers integrated in major urban hospitals in Montreal, Quebec, Canada. More specifically, the Segal Cancer Centre at the Jewish General Hospital, the Cedars Cancer Centre at the McGill University Health Centre, and the Cancer Centre at St. Mary’s Hospital. The Rossy Cancer Network (RCN), based also in Montreal, and aiming to further integrate practice across the three institutions, supported the process of survey distribution.
A self-report questionnaire called the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) [31] that seeks to assess patients’ experience and satisfaction with cancer care was the main measure used in this study. Various health care facilities across North America have used the AOPSS (NRC Picker, http:// nationalresearch.ca/). It is a standardized questionnaire consisting of 85–100 items. The 44 core items are used to construct 6 care domain scores. These domains include: (i) emotional support, (ii) coordination and continuity of care, (iii) respect for patient preferences, (iv) physical comfort, (v) information, communication and education and (vi) access to care. Additional survey questions are organized by themes (e.g., background, diagnosis, treatment planning, tests, surgery, oral cancer medication, IV chemotherapy, radiation therapy, symptom management, emotional health, and care providers). AOPSS sample items include: “Do you think the care providers knew enough about therapies for treating cancer?”, “Were the results of your surgery explained in a way you could understand”, and “Do you feel your doctor(s) listened carefully to you?” Three items also address general satisfaction with care: 1) “Did you feel that your care providers did everything they could to treat your cancer?” 2) “Overall, how would you rate the quality of care in the past 6 months?” 3) “Would you recommend the health care providers to your family and friends?”. NRC Picker provides the opportunity to add supplementary questions tailored to the
needs of institutions. A minimum set of demographic information also is collected: age in 10-year ranges, gender, education, tumor type, and first or repeat cancer diagnosis.
To assess CISP, I added a validated item [30] asking participants to choose a statement (among five) that best characterizes their own cancer information-seeking preferences. The item is worded as follows: “Which of the following statements best describes why and how you go about getting information about your cancer?” (choose only one statement): (i) “I seek as much cancer information as possible on my own (Intense seekers); (ii) "I seek more cancer information to better take care of myself” (Comple-mentary seekers); (iii) "I seek cancer information from others diagnosed with cancer to compare with my own situation" (Fortuitous seekers); (iv) "I do not seek much cancer information on my own – I would rather focus on other things in my life"(Minimal/uninterested seekers); (v) "Cancer is stressful enough; I do not seek cancer information" (Guarded avoiders). Validated English and French versions of the AOPSS survey were used in this study.
Following ethics approval at each of the cancer centers and hospitals, eligible participants were sent a survey package containing a cover letter, the questionnaire and a pre-paid postage reply envelope to return the completed survey, if they chose to participate. They were told that a returned survey indicated a voluntary consent to participate. NRC Picker (the distributer of AOPSS) compiled the results of the pseudo-anonymous surveys.