Assessing information needs on bone health in cancer survivors

Abstract

Purpose

Bone health education and implementation of preventive measures are key to effective management of osteoporosis. We assessed areas of knowledge deficits with respect to bone health in breast and prostate cancer survivors and the preferred source of health information

Methods

We used a mixed methods approach. We conducted 20 semi-structured interviews in breast or prostate cancer survivors receiving hormonal therapy. Responses were independently coded by 2 researchers and explored under 3 content areas: osteoporosis knowledge, behaviors for self-management, and preferred learning tools. Another 20 participants responded to a structured questionnaire that comprised modified versions of the Osteoporosis Knowledge Questionnaire (OPQ) and Osteoporosis Knowledge Assessment Tool (OKAT). The OPQ and OKAT were analyzed as summary scores, and areas of knowledge deficits (i.e., where ≥60 % of participants failed to give the right response) were identified.

Results

Median age of participants was 67 (range 48–92) and 78 % were White. Awareness of osteoporosis was high, but detailed knowledge was low. Bone healthy behaviors perceived by participants as most important include good nutrition, exercising, calcium and vitamin D supplementation and avoidance of falls. The Internet was the most preferred source of information. Areas of knowledge deficit revealed by the OPQ and OKAT included general information, risk factors, prevention, and treatment of osteoporosis.

Conclusion

There is a desire for information on osteoporosis, specifically tailored for cancer survivors. Good nutrition, supplement intake, exercise, and avoidance of falls were perceived as key behaviors for self-management. The Internet was an important source of information for breast and prostate cancer patients.

Implication for Cancer Survivors

An educational website addressing the bone health information needs of cancer survivors could effectively improve behaviors for self-management.

Appendix

Cognitive interview script

Before we begin, let me ask you, who to you is a Cancer Survivor?

When does one become a cancer survivor? {probe as needed}

Theme 1. Osteoporosis knowledge

• 1. What, to you, is “bone health”? {probe as needed}

  • a. What does it cover?

  • b. Is it useful? How so? {probe as needed}

• 2. Are there any specific questions that you have regarding bone health?

• 3. What have you heard about or thought about “osteoporosis”? Can you explain what it is? {probe as needed}

• 4. What information regarding osteoporosis would you like to know? {probe as needed}

• 5. If we wanted to send a message to all cancer survivors, what other information do you think would be important to include? {probe as needed}

• 6. Talk to me about how this information is important to you or why it is not important to you? Would or would not this information help you with your disease? {probe as needed}

Theme 2. Self-management health behaviors

• 1. Can you tell me in your own words what are bone healthy behaviors? {probe as needed}

• 2. Is there something you would like work on to improve your bone health this week? {probe as needed}

• 3. Is there something you would like to work on in the next month to improve your bone health? {probe as needed}

• 4. Do you have any other ideas on how we can help people to solve and deal with bone health issues? {probe as needed}

• 5. Do you consider osteoporosis medications important? If so, why? {probe as needed}

• 6. What would be the best way to promote compliance to healthy life habits and treatment? {probe as needed}

Theme 3. Preferred learning tools

Maybe you can take a few moments to think back on other times you got information or learned about something. It doesn’t have to be about your health. It can be any time that worked well and you learned about something. {Like a diet or maybe something about taking care of your kid or a family member}

Do you have a situation in mind?

• 1. What made you understand the information? {probe as needed}

  • a. Would it be something you read?

  • b. Something you hear?

  • c. Or something you could watch on TV?

  • d. Or on a computer?

  • e. At home or at the doctor’s office? {probe as needed}

• 2. What method is more interesting and fun to learn from?

• 3. What delivery methods are more difficult to learn from {books, Internet, DVDs, TV, audio CDs}

  • a. Why they don’t work? {probe as needed}

  • b. If answer is Internet, then:

    • How hard or easy is for you to surf the web?{probe as needed}

    • What information do you usually search for? {probe as needed}

    • What concerns do you have about the information displayed in the internet? {probe as needed}

Do you have any suggestions that would make information displayed on the internet easy to use? {probe as needed}