Table 1 Contents and origins of Daughter Sister Mother Project survey instrument items
Topic | Concepts measured | # Questions | Origin of measures |
|---|---|---|---|
Daughter Sister Mother Project Main Survey | Total of 90–233 questions per respondent | ||
Personal information | Race, Hispanic ethnicity, Ashkenazi Jewish descent | 2 | Alliance1, newly developed questions adapted from IBISv72, Claus3, and Gail4 risk prediction models |
Height, weight, age | 3 | Newly developed | |
Biopsy history | 1–3 | Newly developed questions adapted from IBISv7, Claus, and Gail risk prediction models | |
Hormonal & reproductive history | Menstrual history | 2–3 | Newly developed questions adapted from IBISv7, Claus, and Gail risk prediction models |
Childbearing history | 1–2 | Newly developed questions adapted from IBISv7, Claus, and Gail risk prediction models | |
Use of hormone replacement therapy | 1–4 | Newly developed questions adapted from IBISv7, Claus, and Gail risk prediction models | |
Risk perception | Perceived personal risk of breast cancer, cancers other than breast/ovarian | 2 | Gramling et al. (2006), Gurmankin Levy et al. (2006) |
Cancer prevention beliefs | Belief that one can lower breast cancer risk | 1 | HINTS5 |
Family cancer history | History of cancer among relatives | 9–30 | Newly developed questions adapted from IBISv7, Claus, and Gail risk prediction models |
Screening behaviors | Mammogram history and feelings | 1–7 | BRFSS6 & ACS7 (most recent, frequency) |
Newly developed (abnormal results, feelings, reasons not to be screened) | |||
Breast MRI history and feelings | 1–7 | BRFSS & ACS (most recent, frequency) | |
Newly developed (abnormal results, feelings, reasons not to be screened) | |||
Clinical breast exam history and feelings | 1–6 | BRFSS & ACS (most recent, frequency) | |
Newly developed (abnormal results, feelings, reasons not to be screened) | |||
Genetic testing | Personal history of genetic testing, having heard of it, referral to genetic testing, stage of genetic testing decision, reasons for/against testing | 2–6 | Partially adapted from Watson et al. (1999), Green et al. (2009), newly developed |
Family genetic testing history | 1–9 | Newly developed questions adapted from IBISv7, Claus, and Gail risk prediction models | |
Preventive mastectomy | Personal history of preventive mastectomy, having heard of it, stage of decision making, difficulty of decision, reasons for/against it, conditions under which would consider it, barriers to surgery, breast reconstruction, relevant feelings | 1–9 | Newly developed |
Preventive oophorectomy | Personal history of preventive oophorectomy, having heard of it, stage of decision making, difficulty of decision, reasons for/against it, conditions under which would consider it, barriers to surgery, relevant feelings | 1–9 | Newly developed |
Chemoprevention | Personal chemoprevention history, having heard of it, stage of decision making, difficulty of decision, reasons for/against it, conditions under which would consider it, barriers to use, relevant feelings | 1–13 | Newly developed |
Lifestyle behaviors | Tobacco smoking behavior | 1–2 | BRFSS |
Alcohol use | 1–2 | NHANES8 | |
Exercise habits | 1 | HINTS | |
Fruit and vegetable consumption | 1 | Alliance (adapted form) | |
Belief that lifestyle changes could lower risk | 1–2 | Newly developed | |
Cancer exposure | Number of cancer cases among loved ones, relationships involved, outcomes of cancer cases | 1–4 | Newly developed |
Emotional and physical exposure to cancer cases among loved ones | 15–45 | CONNECS Scale9, with the addition of a newly developed “direct involvement” subscale | |
Healthcare providers | Source of usual care | 1–2 | CITIES10 |
Use of relevant healthcare providers—primary care providers and specialists | 2 | Newly developed | |
Gender, length of relationship, quality of care, shared decision-making, referral patterns, discussing breast cancer risk w/ relevant providers | 5–24 | Newly developed, Ayanian et al. (2010), Control Preference Scale11 (adapted form) | |
Social support | Available types of social support | 5 | Medical Outcomes Study (MOS) Social Support Survey12 (adapted form) |
Supportiveness of family, friends, partner | 3 | Newly developed | |
Financial constraints | Current and past health insurance | 2–4 | CITIES, newly developed |
Health status | Overall quality of life and health | 2 | CITIES |
General mental health | 5 | MHI-513 | |
Cancer worry | 3 | Impact of Events Scale14 (adapted form) | |
Comorbidities and limitations of daily living | 2 | Newly developed, partially based on Satariano and Ragland (1994) | |
Socioeconomic status, demographics | Household income and size, occupation, education, sexual orientation | 5 | CITIES, Alliance |
Closing questions | Willingness to participate in future studies | 2 | Newly developed |
Providing email address for gift certificate | 1 | Newly developed | |
Daughter Sister Mother Project Supplemental Survey | Total of 37–45 questions per respondent | ||
Risk perception | Salience, severity belief, and fear of breast cancer | 3 | Gramling et al. (2006), Gurmankin Levy et al. (2006), newly developed items |
Information gathering | Desire for information, importance of information, fear of information, confidence in obtaining information, barriers to obtaining information | 5 | Health Information Orientation Scale15, Autonomy Preference Index16, HINTS, Barriers to Information Scale17 |
Cancer exposure | Exposure to chemotherapy of a loved one | 1 | LILAC18 |
Social support | Experience & interest in support groups, experience and interest in other high-risk women, social support from partner | 9–11 | Newly developed, Watts et al. (2011) |
Financial constraints | History of delaying/avoiding medical appointments/procedures due to financial constraints | 7 | CITIES (adapted form), NHIS19 (adapted form) |
Caregiving responsibilities | Caregiving responsibilities for children or disabled/ill adults | 2–5 | Newly developed |
Medical mistrust | Healthcare system mistrust | 5 | Health Care System Distrust Scale20 |
Discrimination | Experience of discrimination in health care | 1–2 | CARE21 (adapted form) |
Religion & faith | Religious identification, attendance, strength of faith, perception that God controls health | 4–6 | CITIES, Schwartz et al. (2000), God Locus of Health Control scale22, newly developed |