Correspondence/findings
Overall development process
Questionnaire development steps | Year | ||
---|---|---|---|
2002 | 2007 | 2012 | |
Literature review | X | X | X |
Feedback from scientific communities on previous questionnaires | X | X | |
Expert input/panel | X | X | |
Conceptual workshop | X | ||
Inductive cognitive review | X | ||
Cognitive interviews with staff members | X | ||
Cognitive interviews with volunteers from general public | X | X | X |
Focus groups with health leaders and subject matter experts | X | ||
Feedback from Census Bureau interviewers | X | X | X |
Quantitative analysis of previous child survey data | X |
Literature reviews
2002
2007
2012
Feedback from scientific and practitioner communities
2007
Topic | 2002 | Enhancements/changes for 2007 | Enhancements/changes for 2012 |
---|---|---|---|
Practitioner-based therapies included in survey | Acupuncture | Chiropractic care replaced with chiropractic or osteopathic manipulation | Added craniosacral therapy |
Rreiki no longer distinguished from other energy healing therapies | Modified list of traditional healers | ||
Ayurveda | Added movement therapies (Feldenkreis, | Allowed participants to report whether chiropractor or osteopathic physician provided manipulation therapy | |
Alexander Technique, pilates, Trager | |||
Biofeedback | Psychophysical integration) | ||
Added Traditional Healers (Curandero, Espirtista, | |||
Chelation therapy | Hierbero or Yerbera, Shaman, Botanica, | ||
Native American Healer, Sobador) | |||
Chiropractic care | Removed folk medicine | ||
Energy healing therapy/Reiki | |||
Folk medicine (such as Curanderismo or Native American healing) | |||
Hypnosis | |||
Massage | |||
Naturopathy | |||
Self-care therapies included in survey | Nonvitamin, nonmineral dietary supplements (NVNMDS) (35 total) | Included 44 NVNMDS on flashcard | Pared down set of questions on vitamin and mineral supplements |
High dose or megavitamin therapy | Added vitamin and mineral supplements | Expanded list of NVNMDS to 21 on flashcard and 98 in lookup table (119 total) | |
Homeopathic treatment | Removed high dose or megavitamin therapies | Classified meditation into 3 broad categories (mantra, mindfulness, and spiritual) | |
Special diets (vegetarian, macrobiotic, Atkins, Pritikin, Ornish, zone) | Added South Beach to special diets | Removed breathing exercises as separate therapy but included it within other therapies (hypnosis, biofeedback, meditation, guided imagery, progressive relaxation, yoga, tai chi, qi gong) | |
Yoga, tai chi, qi gong | Pared down questions on prayer for your own health | ||
Relaxation techniques (meditation, guided imagery, progressive relaxation, deep breathing exercises) | Removed zone and South Beach from special diets | ||
Prayer for your own health | Removed prayer for your own health | ||
Information collected for each therapy | 12 month prevalence | Added lifetime prevalence | Added whether all or some of the costs were covered by health insurance |
Frequency of use in past 12 months for practitioner-based therapies | Added frequency of use in past 12 months for self- care therapies | ||
Modified questions on out-of-pocket costs to allow for different ways of reporting | |||
Use for specific health problem or condition | Added out-of-pocket costs in past 12 months (per visit/purchase) | Cost of self-help materials expanded to include both practitioner-based and self-help therapies | |
Reasons for use (conventional care would not help, conventional care was too expensive, combination of conventional care and complementary medicine would help, recommended by conventional provider, thought it would be interesting to try) | Added whether also using conventional care for the same health problem as using complementary therapy | Narrowed questions on reasons for use to the 3 therapies most important for health; did not ask for chelation and Ayurveda; asked collectively for movement, traditional healers, and special diets | |
Added additional reasons for using complementary therapy (energy, wellness, immune function, recommended by family, friends, or coworkers) | Greatly expanded reasons for use to include wide range of wellness-related reasons, motivators, and outcomes | ||
How much therapy helped health problem | Added how much therapy helped most important reason for using it | ||
Importance of use of therapy | Added how much use of therapy helped the specific health problem | ||
Disclosure to conventional provider | |||
Whether insurance covered any of the Costs | |||
Added importance of use of therapy | |||
Modified disclosure to apply to personal care provider | |||
Added reason for not disclosing use | |||
Added sources of information about therapy | |||
Additional information collected | Numerous health conditions added to NHIS core | Added additional health conditions to NHIS core | Modified list of health conditions added to NHIS core based on prevalence data from prior surveys |
Collected detailed follow-up information for up to two NVNMDS | Added questions about having a personal health care provider and whether he/she is the same practitioner for complementary therapies | ||
Expanded list of reasons for using NVNMDS and vitamin and mineral supplements | Expanded child questionnaire to be almost identical to adult; limited to children age 4+ | ||
Added reasons didn’t use certain therapies (acupuncture, chiropractic, NVNMDS, yoga, and meditation) | |||
Added child questionnaire with subset of items from adult survey (12 month prevalence, use for specific health problem, use of dietary supplements for sports) |
2012
Expert panels and workshops
2002
2002 | 2012 | ||
---|---|---|---|
Initial development | Minority population | Wellness workshop | Research topic think tank |
(n = 13) | (n = 13) | (n = 27) | (n = 24) |
Epidemiology (n = 2) | Aging, women’s health and use of complementary therapies | Aging, dementia, and health rehabilitation (n = 4) | Pediatrics and complementary therapies (n = 2) |
Health policy | Diabetes and complementary therapies | Chronic disease and health behaviors (n = 3) | Healthcare utilization and complementary therapies (n = 2) |
Health psychology | Ethnic and racial minorities and complementary therapies | Developmental disabilities, and parent and child behaviors | Pain conditions. epidemiology and complementary therapies |
Health services research | Health outcome research in Hispanic populations | Health education and complementary therapies | Health services research and complementary therapies (n = 2) |
Minority populations and complementary therapies | Healthcare disparities | Health outcomes research | Public health, Hispanic populations, and complementary therapies |
Nutrition and physical activity | Minority populations and complementary therapies | Health psychology and spirituality | Quantitative psychology and complementary therapies |
Pain conditions and complementary therapies | Public health and African Americans | Human values and moral development | Health Psychology and complementary therapies |
Public health (n = 2) | Public health and the environment | Patient reported outcome measures | Psychometrics |
Questionnaire design | Use of complementary therapies among African Americans | Nephrology, clinical research, and complementary therapies | Health education and complementary therapies |
Sociology | Use and effectiveness of complementary therapies in health and illness | Pain conditions, epidemiology and complementary therapies | Geriatrics, rural healthcare, and complementary therapies |
Survey design and complementary therapies | Women’s health and complementary therapies (n = 3) | Pediatric psychology and illness (n = 2) | Health economics and complementary therapies |
Personality | Analysis of complex datasets | ||
Positive psychology | Complementary therapy use among racial and ethnic minorities | ||
Quality of life research | Survey Methodology (n = 2) | ||
Questionnaire design, survey methodology and health statistics (n = 3) | Medical Care statistics | ||
Social and psychiatric epidemiology and social support | Naturopathy (n = 2) | ||
Social Psychology and mental health | Sociology and qualitative research | ||
Substance abuse | Survey design (n = 2) | ||
Wellness, and psychological issues of dealing with chronic illness |
1 Literacy level of questions at 8th grade or below | |
2. Specific questions are generally easier to answer than broad ones | 8. Questions covering multiple concepts are decomposed into single questions |
3. Question captures what researcher intended (i.e. every respondent answering the same question) | 9. Questions are designed to avoid social desirability effects |
4. Question interpreted as intended by persons in a range of socio-demographic groups | 10. Avoid: |
a. questions worded in the negative | |
5. Response categories fit the question and are non-overlapping, clear and unambiguous | b. complex questions |
c. questions combining two items in one (double barreled) | |
6. Reference periods are clear and match respondent’s ability to recall | d. jargon |
e. ambiguous terms | |
7. Terms and definitions are defined | f. questions that lead respondents toward a particular answer |
2012
Wellness workshop
Research topic think tank
Cognitive interviewing
2002 (n = 25) | 2007 (n = 32) | 2012 (n = 48) | ||
---|---|---|---|---|
Draft Q | Draft Q | W-being (n = 24) | Draft Q (n = 24) | |
Age
| ||||
Under 35 | † | 11 | 6 | 3 |
35+ | † | 21 | 18 | 21 |
Gender
| ||||
Female | 20 | 18 | 11 | 16 |
Male | 5 | 14 | 13 | 8 |
Race/Ethnicity
1
| ||||
Hispanic | 0 | 2 | 8 | 0 |
Non-Hispanic White | 17 | 8 | 12 | 9 |
Non-Hispanic Black | 7 | 20 | 4 | 13 |
Asian | 1 | 1 | 2 | 2 |
Other | 0 | 1 | 6 | 0 |
Education
| ||||
High school or below | 8 | 9 | 0 | 0 |
More than high school | 17 | 23 | 24 | 24 |
Income
2
| ||||
Under $20,000 | 5 | 13 | 4 | 6 |
$20,000+ | 19 | 18 | 20 | 18 |
Employed
| ||||
Yes | † | † | 19 | 14 |
No | † | † | 5 | 10 |
Marital status
| ||||
Never married | † | † | 11 | 10 |
Currently married | † | † | 7 | 5 |
Separated | † | † | 2 | 1 |
Divorced | † | † | 4 | 6 |
Widowed | † | † | 0 | 2 |
Question | Action taken | Justification |
---|---|---|
Did you see a practitioner for/use [therapy] because it was recommended by a medical doctor?
| Accept original question | Cognitive testing confirmed that respondents were primarily thinking of “Western,” “mainstream” medical doctors when they responded to this question, as intended. |
Original question: Did you do breathing exercises as part of [certain therapies]?
| Accept original question with minor edits | Testing revealed that respondents understood “breathing exercises” differently so that some thought it included merely taking a deep breath whereas others thought it was a more formal technique. Therefore, a definition was included in the text of the question. |
Final question: Did you do breathing exercises as part of [certain therapies]? Breathing exercises may involve actively controlling the way air is drawn in, or the rate or depth of breathing.
| ||
Original question: During the past 12 months, did you see practitioner for/use [therapy] for any of these reasons…”
| Accept original question with major edits | This question was divided into two questions and re-worded so that only respondents using medical treatments were asked whether experiences with medical treatments influenced their use of complementary therapies, and the type of medical treatment is explicit. Cognitive testing of the original question revealed that respondents found the reference to “medical treatments” unclear. For respondents who were not receiving or using any medical treatments, these questions appeared not to be applicable. In fact, a number of respondents specifically commented that these questions were not relevant to their circumstances. |
…Medical treatments were not helping you?
| ||
…Medical treatments were too expensive?
| ||
…[modality] combined with medical treatments would help you?
| ||
Revised and restructured into 2 new questions: | ||
Did you receive any of the following medical treatments for
| ||
[condition using complementary therapy for]…”
| ||
Prescription medications?
| ||
Over-the-counter medications?
| ||
Surgery?
| ||
Physical therapy?
| ||
Mental health counseling?
| ||
[next question asked for respondents who said yes to any items in question above]? | ||
DURING THE PAST 12 MONTHS, did you see a practitioner for/use [modality] for any of these reasons…
| ||
These medical treatments do not work for the health problem you want to treat or prevent?
| ||
[next question asked for respondents using prescription medications and/or over the counter medications] | ||
Prescription medications/Over the counter medications cause side effects?
| ||
Do you currently see a practitioner for [therapy] more, less or about the same as you did one year ago?
| Question dropped | Question was problematic for respondents who see a practitioner only sporadically or on an “as needed” basis. For instance, one respondent who had used homeopathic treatment in the past 12 months said she only uses it when she has a flare up and therefore found it difficult to compare her current use to her use 1 year ago. Similarly, a respondent who did not practice yoga with any regularity had difficultly answering. |
Original question: During the past 12 months, did you see a practitioner for/use [therapy] because it is how you were raised?
| New question written | Although the meaning is similar, this item was re-worded to better capture the way some respondents are influenced to use complementary therapies by cultural factors. When hearing the original question, several respondents hesitated and seemed to find the original wording awkward, evidenced by one respondent who said, “That sounds very odd.” The phrasing “how you were raised” suggested a more deliberate action than merely being exposed to complementary therapies at an early age. “It was part of your upbringing” better captured unintentional or cultural exposure which was the intent of the item. |
Final item: During the past 12 months, did you see a practitioner for/use [therapy] because it was part of your upbringing?
| ||
General wording of "disease or health problem" found in many questions | Modified | Changing wording to "health problems, symptoms, or conditions" is more comprehensive and inclusive |
DURING THE PAST 12 MONTHS, did you or another family member get information about [fill1: modality] from any of the following sources? | Question written (didn’t exist previously) | Information sources about complementary therapies was identified as an important and missing topic during focus groups |
The internet? | ||
Books, magazines, or newspapers? | ||
Television or radio? | ||
Scientific articles? | ||
Health food stores? | ||
[fill1: Not including the practitioner [fill: S.C. name] saw for [fill2: modality] DURING THE PAST 12 MONTHS, did you let [fill S.C. name]’s personal health care provider know about [fill: his/her] use of [fill3: modality]? | Question written (didn’t exist previously) | Communication about complementary medicine use with other health care providers was identified as an important and missing topic during focus groups |
If no, why not:… | ||
[fill: S.C. name] was not using it at the time? | ||
They discouraged use of it in the past? | ||
You were worried they would discourage it? | ||
You were concerned about a negative reaction? | ||
You didn’t think they needed to know? | ||
They didn’t ask? | ||
You don’t think they know as much about it as you do? | ||
They didn’t give you enough time to tell them? |
Questionnaire item | Problem identified during cognitive testing | Type of error | Resolution |
---|---|---|---|
Have you ever used high dose or megavitamin therapy for your own health or treatment? | Many respondents who took vitamin supplements and/or a daily multi-vitamin responded “yes” even though they were not taking megavitamins. | Misinterpretation | Question divided into two parts so respondents who took any kind of vitamins had a chance to say “yes.” Second question screened out the non high-dose users. |
(2002) | |||
Have you EVER seen a provider or practitioner for movement therapies?
| This question posed some definitional problems. Respondents had different definitions of movement therapy, including yoga and, more commonly, physical therapy. | Definition unknown | Specific movement techniques (Feldenkreis, Alexander Technique, Pilates, Trager Psychophysical Intergration) were asked about individually |
(2007)
| |||
How old where you when you first saw a practitioner for [therapy]?
| It was nearly impossible for persons who were heavy users of complementary therapies for a long time to remember the age at which they started using various complementary therapies. | Failure to recall | Question dropped |
(2007)
| |||
Have you EVER used natural herbs or other non-vitamin supplements for your own health?
| For some people, using herbal, non-vitamin supplements carries meaning beyond simply using an herb for a specific purpose. As one respondent put it, using alternative therapies is a “way of life.” As a result, people who do not see themselves in this light define their supplement use differently from those they view as “users” of supplements. Several respondents who had no complementary therapy identity wanted to be sure they weren’t labeled as “users.” And this concern affected the way they interpreted and answered the questions. In the end, false negatives were elicited from respondents with this perspective; that is, the question is not capturing all people who use herbal supplements. Furthermore, the data suggest herbal users may not be missed at random, representing a pattern that would lead to biased estimates [62]. | Answer based on self-concept rather than actual behavior | Question limited to specific pills, capsules, tablets, or liquids labeled as a dietary supplement, listed on a flashcard shown to the respondent |
(2007)
| |||
DURING THE PAST 12 MONTHS, did [child] pray specifically for the purpose of his/her OWN health?
| This question asked respondents about something they have no way of knowing for sure (“I don’t know”; “I don’t think so”; “I’m guessing no”; “not that I’m aware of”). Those with small children can make a better assessment because prayers are sometimes said out loud together, but those with older children usually have to guess [62]. | Information unknown | Question dropped |
(2007)
|
2002
2007
Child section
Mineral and NVNMDS sections
Perceptions of complementary therapies
2012
Concepts of wellness and well-being
Question (s) | Outcome | Rationale |
---|---|---|
Help you relax
|
Combined into “help to reduce your stress level or to relax” | Testing found the questions to be redundant |
Help to reduce your stress level
| ||
To cleanse/detoxify your body
|
Deleted
| Respondents offered a wide variety of interpretations and meaning varied tremendously from person to person. Some considered it to be referring to “a cleanse” in the very literal sense, such as a colon cleanse. One respondent provided the example of the cayenne pepper and maple syrup diet. Others thought it referred to the period after an addict stops using drugs or alcohol and attempts to purge the body of these substances. For still others this was interpreted to be more symbolic, as in the case of a “mental or emotional cleans”’ as one respondent put it [63]. |
Because the practitioner spends more time with you than medical doctors
|
Deleted
| Several respondents explained that they pay for the time with the practitioner. As one respondent put it after hearing this question, “Well, yeah, [because] I paid for 20 minutes.” Another respondent similarly explained that you “pay for the time” with the practitioner and so “of course you get more time with them” (he was thinking specifically about massage practitioners) [63]. |
Because the practitioner treats the whole person and not just one part because it focuses on the whole person and not just one part
|
Combined/Modified to “it focuses on the whole person, mind, body, and spirit” | The question did not work well when focused on “the practitioner,” especially for massage. Several noted that they actually want their masseuse to focus on only one part of, for example, their backs, and not their entire bodies. Also, the phrase “mind, body, and spirit” resonated with respondents’ experiences with complementary therapies [63]. |
Because I can participate in decisions about my health with my practitioner
|
Deleted
| The question had varying interpretations and varied widely based on the type of practitioner being seen. Respondents using “hands-on” treatments such as massage said they can tell their practitioners where to focus and which parts of their bodies need more attention. Others thought it meant “sitting down with my doctor, presenting the symptoms and then working together to come up with a solution. [63]” |
To stay healthy
|
Deleted
| A number of respondents commented that this either seemed “too broad” or ‘too obvious.” As one respondent put it, “You go to a doctor to stay healthy. It’s too obvious.” Another asked, “What’s healthy? That’s too general.” [63] |
Thinking about seeing a practitioner for [modality], please tell me if any of these statements are true for you. Using [modality] has… |
Modified to accommodate proxy reporting and include items salient to children
| Question stem and individual items modified to ask parent proxy whether he/she “thinks” these items applied to his/her child, and items thought to be unknown by parent were dropped. Also, the items on alcohol and smoking were not asked for children. Attendance at school was added. |
Given you a sense of control over your health? | ||
Helped you to relax? | ||
Helped you to reduce your stress level? | ||
Motivated you to eat healthier? | ||
Motivated you to eat more organic foods? | ||
[for respondents who report drinking alcohol in core] | ||
Motivated you to cut back or stop drinking alcohol? | ||
[for respondents who report smoking in core] | ||
Motivated you to cut back or stop smoking cigarettes, cigars, or pipes? | ||
Motivated you to exercise more regularly? | ||
Improved your overall health and made you feel better? | ||
Given you more hope for the future? | ||
Increased your ability to focus? | ||
Made you feel better emotionally? | ||
Made it easier to cope with health problems? | ||
Improved your outlook on life? | ||
Improved your relationships with others? | ||
Improved your self-confidence? | ||
During the past 12 months, did you see a practitioner for [modality] for any of these reasons? |
Modified to accommodate proxy reporting and include items salient to children
| Question stem and individual items modified so that parent proxy could answer about his/her child, and items thought to be unknown by parents were dropped. Item on sexual performance not asked for children. |
To stay healthy | ||
To improve your energy | ||
To Improve your immune function | ||
To improve your physical ability | ||
To improve your athletic or sports | ||
performance | ||
To improve your sexual performance | ||
To improve your concentration | ||
To improve your memory | ||
To improve your flexibility | ||
To improve your muscle strength |