Summary of Recommendations from Cognitive Testing of the Spanish Translation of the MEPS Cancer SAQ

The National Cancer Institute, the Centers for Disease Control and Prevention, and the American Cancer Society are developing a self-administered questionnaire, Your Experiences with Cancer, for current cancer patients and cancer survivors identified in the Medical Expenditure Panel Survey sponsored by the Agency for Health Care Research and Quality. The questionnaire will be fielded in English and Spanish in Spring 2012 (MEPS Panel 16 Round 3 and Panel 15 Round 5).

The Medical Expenditure Panel Survey produces national estimates of healthcare use and expenditures. The Cancer SAQ will supplement MEPS data, providing information about the burden of cancer in the US, long lasting effects of the disease, financial impacts, and employment outcomes for cancer survivors and their families. Findings from this research will provide key information needed for the development of interventions to improve the quality of the cancer survivorship experience, as well as pivotal information for policy makers in understanding and improving the burden of cancer.

As part of the development process, Westat conducted two rounds of cognitive testing in English and one in Spanish to assess how well respondents are able to understand and answer the questionnaire items. The cognitive interviews in Spanish were conducted from November 30th to December 8th and included eight respondents. This memo summarizes findings and recommendations from this final testing effort.

It was a challenge recruiting this specialized population of Spanish-speaking cancer patients and survivors. In June we started by posting Spanish-language flyers at local hospitals, clinics and support groups we identified through our own or the workgroup’s contacts. However, by September, only four respondents had called the recruiting hotline. We then expanded our efforts to local stores, churches, and beauty salons. We also drew on internal resources at Westat by posting the flyer on kitchen notice boards, networking with Hispanic colleagues, and submitting an announcement on the company’s Intranet site. In addition, an announcement about the study was made on the Spanish radio show El Café del Inmigrante, hosted by a local immigration lawyer. Eventually, a total of fifteen people were screened as potential respondents for the eight interviews.

To be eligible, potential respondents had to have a current or past cancer diagnoses. In addition, participants were screened and selected based on type of cancer, time since last diagnosis, and employment status. Table 1 shows the distribution of demographic characteristics across Spanish-language interview respondents. About one-third of them had a current diagnosis and the rest were skewed more towards the distant past. They tended to have a higher education level, with three holding an advanced degree. One respondent with two years of education requested that the questionnaire be read to her. It is not clear whether this was because of vision problems or literacy. Finally, our respondents mostly originated from Central and South America. Only one Puerto Rican respondent represented any of the three largest Latino groups in the U.S. (Mexican, Cuban and Puerto Rican). This likely does not accurately reflect MEPS Spanish-language respondent demographics.

Table 1. Distribution of Spanish-language respondent demographic characteristics

In general, we followed the same protocol development process as described in the Round 1 memo. The Spanish-language protocol also included probes on specific translations of words and phrases that we felt might be problematic (e.g., secuelas for "lasting effects"). The Spanish-language interview protocol appears in Attachment D.

Respondents participated in a one-hour in-person interview either at Westat’s Rockville offices or at a location of their choice (four respondents chose to do the interview at their home or in an office). They received $40 for their time as well as a $10 travel allowance. After introducing the study, its purpose and the cognitive testing procedures, interviewers asked respondents to sign the informed consent form. The interviewer then asked respondents to read and react to the cover page, after which they were instructed to begin filling out the questionnaire. Using the protocol, interviewers administered a combination of retrospective and concurrent probes to obtain respondent feedback on how easy or difficult it was to understand and answer the survey questions. In addition to administering the scripted concurrent probes, interviewers also noted any unanticipated reactions or problems with the items and followed up on those issues as needed.

We followed the same analysis steps for the Spanish-language Interview data that we did for the Round 1 and 2 interview data, as described in the October 3rd memo. The primary focus of analysis in this round of testing was on the effectiveness of the Spanish translation.

The Cancer SAQ is targeted to respondents who are currently undergoing treatment and those whose treatment occurred at any time in the past. It is intended for those who have had one cancer occurrence as well as those with multiple cancer diagnoses. There were no respondents with multiple cancers so there was no indication of how the translation would work for such respondents.

Four respondents had been diagnosed six or more years ago. None seemed to have trouble remembering and answering the questions. One respondent even brought in a folder with much of his medical information in it, but he ended up not having to refer to it during the interview because, he said, besides exact dates, he had little trouble remembering his experience. In the employment section, however, all seemed to be thinking only about the time of diagnosis and treatment, not including their current situation.

The word, "secuelas" was used in the Spanish translation for the term, "lasting effects." Two respondents were not familiar with the word "secuelas." One Central American respondent with two years of education had never heard the word, but said she understood the concept of "cuidado de seguimento regular" (follow-up care), describing it as what she needs to do to take care of herself and follow the doctor’s instructions so her cancer does not come back. She gave the example of getting a colonoscopy every two years. It seemed that she understood the word "secuelas" in the context of the cover page and then when it first appears in question 9.

The Puerto Rican respondent interpreted "secuela" as sequel. All other respondents could provide examples for emotional, financial and medical effects. For most in this group, "secuelas" seemed to work better than "efectos secundarios" (secondary effects), which implies medical issues only. However, because we were unable to test the translation with respondents from several large Hispanic groups in the U.S., it may be worth including an alternate term with "secuelas," such as "efectos secundarios" (secondary effects) or "consecuencia" (consequences). Both of these terms were used by a few respondents when asked to define lasting effects.

The Spanish-language respondents seemed to have more trouble with the skip patterns than the English-language respondents did. They consistently overlooked the skip instructions in various parts of the questionnaire and, as a result, often mentioned that certain questions did not make sense for them. For example, some respondents who had answered that they did not work ended up reading questions about changes to their work schedules. One respondent suggested that the questionnaire include an example or some sort of explanation about how to navigate the skip patterns. We note that in general, in both English and Spanish, skip patterns tend to be more problematic for those with lower education levels or literacy skills. In this round of testing, however, respondents of all education levels experienced difficulty.

Respondents, in general, appeared to have positive impressions of the questionnaire. They thought the questionnaire was good and worth completing but that certain questions were too wordy. One respondent said it made him emotional to remember these experiences and thought others might have a problem with that. One respondent was in tears recalling her cancer diagnosis, but insisted on completing the interview.

Most respondents felt that the cover page was clear and for the most part, respondents noted that they thought the questionnaire would be about the effects ("secuelas") of their cancer. One respondent said, "No hay nada que no sea legible, que no puedo entender" (There is nothing here that isn’t legible, that I don’t understand). Another said, "Es perfecto." (It’s perfect). Three respondents, when thinking about the effects of their cancer, included aspects beyond the physical effects of cancer (symptoms, treatment, etc.) such as the emotional, psychological and financial effects as well as how cancer affects their lives in areas such as work and family. One respondent reported that he thought the survey would be about describing his personal cancer history.

A few respondents reacted to the title and sponsor of the survey. Based on the information provided on the cover page, one respondent said it would be worth her time to complete the survey. Another young respondent stated after reading just the title that the word cancer is a disease that affects many. He lost both of his parents and a sister to cancer. A third respondent who had the questionnaire read to her reacted emotionally to the title of the survey, saying the word "cancer" still worries her even though overall she feels fine because she has been cancer-free for five years. "Me da preocupación, por mi y por muchas personas..." ("I worry about myself and many other people…").

Q1 Have you ever been told by a doctor or other health professional that you had cancer or a malignancy of any kind?

Q1 ¿Le ha dicho alguna vez un medico u otro profesional de la salud que usted tenía cáncer o un tumor maligno de cualquier tipo?

All but two respondents appeared to understand and answer this question as intended. One respondent from South America with post-graduate education marked "no," explaining that a doctor never told him he had prostate cancer. He went for a routine physical and found out he had cancer as a result of a PSA test. When probed, he said that he would have continued completing the survey (despite the note to stop here). Another respondent was unsure how to answer the question. She had become emotional while discussing her cancer history and needed to reread this question several times. She thought it should be simpler, suggesting it read, "¿Le han dicho alguna vez que usted tenia cáncer, sí o no?" (Have you ever been told you have cancer, yes or no?).

Q3 Are you currently being treated for cancer – that is are you planning for or recovering from cancer surgery, or receiving chemotherapy, radiation therapy, or hormonal therapy for your cancer?

Q3 Actualmente, ¿recibe tratamiento para el cáncer- es decir piensa tener o se está recuperando de una cirugía para el cáncer, o está recibiendo quimioterapia, radioterapia o terapia hormonal para su cáncer?

Two respondents answered "yes" to this question. One who has breast cancer included the hormonal pills (Arimidex) she is taking. Although she will take the pills indefinitely, for the first three years she still considers it as part of her treatment

Respondents who answered "no" defined "currently being treated" as chemotherapy, radiation or medications specific to cancer treatment or prevention.

Q5 ¿Hace cuánto tiempo más o menos que recibió su último tratamiento para el cáncer?

Respondents did not have trouble recalling when they had their last cancer treatment or what to count as "your last cancer treatment." This may be in part because all had only one cancer diagnosis. One respondent said it was not difficult for him to remember because just this past June he celebrated five years since he finished chemotherapy. Another respondent found the question easy to answer because he thought of just one instance, his surgery, as treatment. The only respondents who seemed to have trouble with this question were those that had missed earlier skip instructions.

Q7 What was the most recent year a doctor or health professional told you that your cancer had come back?

Q7 ¿Cuál fue el año más reciente en el que su médico u otro profesional de la salud le dijo que le había vuelto a aparecer su cáncer?

Q9 At any time from when you were first diagnosed with cancer until now, were you working for pay at a job or business?

Q9 En algún momento, desde la primera vez que le diagnosticaron cáncer hasta ahora, ¿estuvo trabajando por un salario en un trabajo o negocio?

When answering Q9, almost all respondents tied employment status to their cancer, treatment and lasting effects of that treatment. The respondents who were employed at the time of diagnosis answered the questions consistently with the job they held at the time of diagnosis and treatment. However, respondents who were not employed at diagnosis, but had worked since, often did not consider their more recent employment status when answering Q9. For example, one respondent began working 2 years after diagnosis and treatment; another sold her business as soon as she learned of her diagnosis. These respondents answered "no" at Q9 and skipped out of the section entirely, such that the questionnaire did not capture any employment changes they might have had subsequent to their diagnosis and treatment.

The following results are based on the four respondents who ended up going through the entire employment section.

Q10 At any time since your first cancer diagnosis, did you take extended sick leave, leave without pay, or a change in your hours, duties, or employment status?

Q10 En algún momento desde la primera vez que le diagnosticaron cáncer, ¿tomó tiempo libre prolongado con el pago en el trabajo, tiempo libre sin pago o hizo cambios en su horario, sus responsabilidades o su situación de trabajo?

Q11 At any time since your first cancer diagnosis did you ask for extended sick leave, leave without pay, or a change in your hours, duties, or employment status?

Q11 En algún momento desde la primera vez que le diagnosticaron con el cáncer, ¿pidió tiempo libre prolongado con pago en el trabajo, tiempo libre sin pago o cambios en su horario, sus responsabilidades o su situación de trabajo?

Four of the eight respondents answered "yes" at Q10. These respondents seemed to be interpreting the item as intended and thought about taking an extended period of time off from work. One respondent answered "no" at Q10 because he only took two days off after his surgery.

Two respondents had some difficulty with this sequence, as one missed the skip instruction to Q13 and another was confused by the wording and progression of the questions.

Q14 Did you ever take extended paid time off from work (vacation, sick time and/or disability leave)? By extended time off, we mean more than an occasional day off here and there?

Q14 ¿Alguna vez tomo tiempo libre prolongado con pago en el trabajo (vacaciones, permiso por enfermedad o permiso por discapacidad)? Por tiempo libre prolongado nos referimos a más de un día de permiso ocasional de vez en cuando.

Respondents who answered this question seemed to interpret "extended paid time off as intended."

Q22 ¿Cambio alguna vez de trabajar tiempo parcial a trabajar tiempo completo?

Only one respondent had difficulty with this item. He interpreted the question to ask whether he had ever stopped working full-time , which he considered himself as having done when he took two weeks off for his operation and recovery. All other respondents appeared to interpret the item as intended.

Q30 Did you ever change from a set work schedule, where you start and end at the same time every day, to a flexible work schedule, where your start and end times vary from day-to-day?

Q30 ¿Cambió alguna vez de trabajar en un horario fijo, en el que comienza y termina a la misma hora todos los días, a un horario de trabajo flexible, en el que la hora de comenzar o terminar el trabajo cambia de día a día?

All respondents interpreted this item as intended. For example, one respondent said that he already had flexible hours at his work and answered "no". During testing, interviewers noticed there was a typographical error in the question wording.

Q36 Did you make any other type of work arrangements because of your cancer, its treatment, or the lasting effects of that treatment?

Q36 ¿Hizo algún otro tipo de cambio en el trabajo debido a su cáncer, su tratamiento o las secuelas de ese tratamiento?

All respondents reported no additional changes at this item. However, one respondent mentioned later in the questionnaire (Q37) that she shared some responsibilities with a coworker when she returned to her job as a way to lighten her workload. When explaining her reasoning for not including this change at Q36, she said that she didn’t request this change herself, rather her employer lightened the workload for her.

Q37- Because of your cancer, its treatment, or the lasting effects of that treatment, did you ever decide not to pursue an advancement or promotion?

Q37 Debido a su cáncer, su tratamiento o las secuelas de ese tratamiento, ¿decidió usted alguna vez no intentar obtener un ascenso o una promoción?

One respondent with low education level did not understand the terms for raise or promotion (ascenso o promoción). Another respondent pointed out that the question is negatively worded "decidió alguna vez NO intentar" (did you ever decide not to pursue) such that a "no" answer may in fact mean "yes" (as in, "no, I decided not to pursue").

Q38 Because of your cancer, its treatment, or the lasting effects of that treatment, did you retire earlier than you had planned?

Q38 Debido a su cáncer, su tratamiento o las secuelas de ese tratamiento, ¿se jubiló usted antes de lo que había planificado?

Q39 Because of your cancer, its treatment, or the lasting effects of that treatment, did you delay retirement beyond when you had planned?

Q39 Debido a su cáncer, su tratamiento o las secuelas de ese tratamiento, ¿pospuso usted su jubilación más allá de lo que había planificado?

Respondents seemed to be interpreting the item as intended. One respondent who answered "no" at Q38 said he would like to retire next year when he is 65, but this decision is unrelated to cancer. Another respondent who answered "no" to both items, said that given his age, 27, he is not yet thinking about retiring.

One respondent, who answered "no" at Q38 did not understand what "más allá" meant at Q39. She wondered if it was asking whether she waited to retire until she was older. She answered "no" reporting that nothing changed. The respondent did admit that she had thought about retiring because her treatment caused her to get tired being on her feet all day and she also wanted to spend more time with her daughter, who has epilepsy.

All four of the respondents who were employed at the time of their diagnosis and treatment answered this section about other aspects of work (Q41 – Q47).

Q44 Did you ever stay at a job in part because you were concerned about losing your health insurance?

Q44 ¿Alguna vez permaneció usted en un trabajo en parte porque le preocupaba perder su seguro medico?

Q45 Were you concerned about losing your health insurance because of your cancer?

Most respondents seemed to be interpreting these items as intended. One respondent who answered "yes" at Q44 explained that she received all health benefits from her job. She said that keeping insurance for herself and her family was the most important reason she kept working. One respondent who answered "no" reported that he does not get health insurance at his job. Instead, he pays for his own insurance and upgraded his insurance upon learning of his cancer diagnosis.

Q47 Did your spouse or significant other ever stay at a job in part because he/she was concerned about losing health insurance for the family?

Q47 ¿Permaneció alguna vez so esposo, esposa o pareja en un trabajo en parte porque a él/ella le preocupaba perder el seguro médico para la familia?

During Round 1 respondents had difficulty answering this item because there are multiple assumptions about insurance, marital, and employment status embedded in it. For the subsequent rounds of testing, we collapsed the tailored response categories into one "does not apply" response option. For the most part, respondents seemed to be interpreting Q48 as intended. The respondents that did use the "not applicable" option used it when they were either not married or because the spouse was working but there were not any concerns about health insurance.

However, the change did not completely solve the problem of respondents using the "no" category to respond to any one part or all of the question’s assumptions. Several respondents answered "no" when "does not apply" may have been more appropriate for their situation.

Q48 Since the time you were first diagnosed with cancer, has any friend or family member provided care to you during or after your cancer treatment?

Q48 Desde la primera vez que le diagnosticaron con el cáncer, ¿le ha proporcionado cuidado algún amigo o familiar durante o después de su tratamiento para el cáncer?

All eight respondents reported having a caregiver. Respondents included family members such as spouses, in-laws, mothers, fathers and sisters. They did not appear to be thinking about medical professionals. When asked to describe the type of caregiving provided, respondents mentioned helping out around the house, driving them to and from appointments, helping them with personal care, taking care of children and providing moral or emotional support.

Only one respondent had difficulty with this item. She reported having trouble understanding the concept of care, asking, "¿Cuidado en qué sentido? … Hay diferentes clases de cuidado" ( In what way? There are different kinds of care). She gave various examples of emotional and physical care. In the end she answered "yes" because her family was always with her ("dedicaron a estar conmigo" they dedicated themselves to be with me) and gave her emotional support which she considered care.

Q49 Because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers ever take sick leave, leave without pay, or change their hours, duties or employment status?

Q49 Debido a su cáncer, su tratamiento o las secuelas de ese tratamiento, ¿tomó alguna vez alguna de las personas que le proporciono cuidados tiempo libre por enfermedad, tiempo libre sin pago o cambio el horario, las responsabilidades o la situación de trabajo?

Almost all respondents had difficulty with this item. When they were asked what had made the question difficult, several said they thought that it was too wordy. Once they reread the question they did not have trouble answering it.

One respondent had difficulty reporting the changes his caregivers made. He thought one of his caregivers took time off but was not sure what kind of time off was taken. He eventually answered "yes" because he knows that it happened, he was just not familiar with the details.

Q50 did any of your caregivers ever take extended paid time off from work, unpaid time off, or make a change in their hours, duties, or employment status for at least 2 months?

Q50 ¿Tomó alguna vez alguna de las personas que le proporciono cuidados tiempo libre prolongado con pago en el trabajo, tiempo libre sin pago o hizo un cambio en el horario, las responsabilidades o la condición de trabajo por lo menos durante 2 meses?

Only two respondents reported that their caregivers took leave or made changes to their work status for more than two months. One respondent had difficulty calculating the employment change. She was not sure if she should calculate the two months as continuous or total time. She decided to provide her answer with continuous time because this would be easiest to calculate. She was thinking of an aunt who took off one or two days a week for the duration of her cancer treatment.

One respondent with multiple caregivers had difficulty with the entire section. He answered "yes" at Q50 but "no" to all subsequent items in the section (including Q63). He said he found the section difficult because his multiple caregivers all had different work situations.

Most respondents had little trouble understanding or answering the health insurance questions, describing a variety of situations. Two respondents received government medical assistance but only one counted it as insurance. The respondent who answered "no" said she did not have insurance and therefore asked for assistance from social workers, who provided assistance so that she did not have to pay for anything. The respondent who answered "yes" described how she met with a social worker at Holy Cross Hospital who filled out paper work for government medical insurance for her cancer in order to cover all costs.

Q68 Was there ever a time when health insurance refused to cover a visit to the doctor or facility of your choice for your cancer?

Q68 ¿Hubo alguna ocasión en la que el seguro medico se negó a cubrir una consulta para su cáncer con el médico o la instalación de su elección?

Four respondents had difficulty with the translation of "facility of your choice." One, who answered "no," said she did not understand the term "instalación." Another said he did not understand the phrase "instalación de su elección" and reported that it was "too vague". He suggested use of more specific examples like "clinic, hospital or office."

For Round 2 of the English-language testing, we included a "does not apply" option at this item to help alleviate ambiguity in respondents’ "no" answers. One respondent answered "no" but said she had never applied for health insurance. She was instead thinking about the fact that she had never been the health assistance she received.

After the first round of English-language testing, we expanded the questions from asking about medical costs to asking about the financial impact of the cancer, its treatment and the lasting effects of that treatment. These changes seem to be capturing a broader range of financial difficulties for the Spanish respondents, as intended.

Q71 Have you or has anyone in your family had to borrow money or go into debt because of your cancer, its treatment, or the lasting effects of that treatment?

Q71 ¿Ha tenido usted o alguien de su familia que pedir dinero prestado o endeudarse debido a su cáncer, su tratamiento o las secuelas de ese tratamiento?

All but one respondent answered "no" to Q71. Respondents seemed to be interpreting the item as intended. For example, thinking about whether they had to borrow money or make other financial arrangements in order to pay for treatment or to support their families because of their illness. Respondents included things like taking out a second mortgage on their house, borrowing money, and going into debt. Respondents understood that medical expenses could also be considered a big financial burden. One respondent said, "Thankfully I did not have to borrow money or go into debt as a result of my cancer." The one respondent who answered "yes" explained how she had to ask a relative for money so that her father could come to the US in order to take care of her. She did not have any trouble recording the amount at Q72.

One respondent, who sold her business after her diagnosis, answered "no" at Q71. She did not consider this to be a "sacrifice;" rather it was simply something that had to be done.

Q77 At any time since you were first diagnosed with cancer, did any doctor or other healthcare provider, including your current healthcare provider, ever discuss with you…

Q77 En algún momento desde la primera vez que le diagnosticaron cáncer, ¿hablo alguna vez con usted algún médico u otro proveedor de cuidado de salud, incluyendo su proveedor de cuidado de salud actual, acerca de…?"

Some respondents had difficulty navigating this series, in large part because they did not seem to realize that sub-items b through d were tied to the question stem. The fact that the first letter for each sub-item was capitalized may have contributed to the difficulty; respondents may have mistaken them for independent questions.

Most respondents were thinking strictly of their medical doctor when answering this series. Only one said that a nurse spoke to him about his diet, exercise and smoking habits.

Respondents seemed to be interpreting the phrase "efectos secundarios tardios o a largo plazo" (late or long-term side effects) as intended and gave examples of effects that continue after treatment. In general, these were considered the same as "secuelas" (lasting effects) but respondents seemed to be more familiar with this alternate phrasing. One respondent said that she understood "efectos secondarios tardios o a largo plazo" to mean that you need to change your life, reduce your stress and thought it has the same meaning as "secuelas."

Q79 Which of these reasons did you not get all of the medical care, tests, or treatments that you or your doctor believed were necessary?

Q79 ¿Por cuál de estas razones usted no recibió todo el cuidado médico, exámenes y tratamiento que usted o su médico consideraban necesarios?

Q80. Which one of these is the main reason that you did not get all of the medical care, tests, or treatments you or a doctor believed you needed?

Q80 ¿Cuál de estas es la razón principal por la que usted no recibió todo el cuidado médico, examines y tratamiento que usted o su médico consideraban necesarios?

Only two respondents received these items, one of them because of a missed skip (he only provided one answer at Q79 and so should have skipped past Q80). One reported that early in his cancer experience the insurance he had at the time of his diagnosis would not pay for his surgery and hospitalization, so he was not able to get treatment immediately. Later on, he obtained insurance and all treatments were covered. At Q80, he marked that the doctor did not accept his insurance, yet he also said aloud that his original insurance would not cover hospitalization.

Q81 Did your cancer, its treatment, or the lasting effects of that treatment ever limit the kind or amount of activities you do outside of work, such as shopping, child care, exercising, studying, work around the house, and so on?

Q81 Su cancer, su tratamiento o las secuelas de ese tratamiento, ¿limitaron alguna vez el tipo o la cantidad de actividades que usted hace fuera del trabajo, tales como ir de compras, cuidar a los niños, hacer ejercicio, estudiar, hacer quehaceres domésticos, etc.?

Most respondents did not appear to have difficulty with Q81 and half reported some kind of limitation. In addition, most respondents had little difficulty reporting the duration of the limitation and whether or not it was ongoing (Q82 and Q83).

Two respondents did have difficulty determining what to include as mental tasks. One was unsure how to answer initially because only her memory was affected by the treatment.. Similarly, a second respondent seemed unsure whether to include forgetfulness due to the chemotherapy treatments. Both respondents ultimately answered "yes."

Q85 Have you ever asked for help getting to a doctor or other healthcare provider because of your cancer, its treatment, or the lasting effects of that treatment?

Q85 ¿Ha pedido alguna vez ayuda par air al médico o a otro proveedor de cuidado de salud debido a su cáncer, o las secuelas de ese tratamiento?

Q86 ¿Recibió alguna vez ayuda para ir al médico o a otro proveedor de cuidado de salud?

Revisions after Round 2 of the English-language testing to these items were based on the workgroup’s desire to capture the experiences of those who asked for but did not receive help. For the most part, respondents were able to distinguish between "asking for" help and "receiving" help.

One respondent who returned to the Dominican Republic during her cancer treatment answered "no" at Q85 because she said her family there always knew when she needed help or was not feeling well so she never had to ask for help. She said in the Dominican Republic there was always someone available to take her to the doctor’s, whereas by contrast, while she was in the U.S. at the start of her treatment, she did have to ask for help because her family there were busy working. She did not include her U.S. experience in her answer, however.

Q92 Which of these, if any, have been positive things about your experiences with your cancer, its treatment, or the lasting effects of that treatment?

Q92 ¿Considera que alguno de los siguientes aspectos ha sido algo positive respecto a sus experiencias con el cáncer, el tratamiento o las secuelas de ese tratamiento?

Respondents seemed to be interpreting this item as intended. In addition, all seemed to be willing to answer "no" to some of the items. For example, one respondent who answered "no" to sub items a - c said that cancer had weakened him and that because of that it is harder to face the challenges of life. This respondent went on to joke at sub-item d that if they had not operated on him he would be dead, so in that sense it has made him stronger and answered, "yes."

For Round 2 of the English-language testing, two response options were added at each sub-item so respondents could check either "yes" or "no." However, about half the Spanish-language respondents had difficulty with the formatting. They thought they had to select which of the sub-items applied to them, rather than answering "yes" or "no" at each one.

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