Identifying patients’ priorities for quality survivorship: conceptualizing a patient-centered approach to survivorship care

Abstract

Purpose

This study explored cancer survivors’ experiences with and priorities for cancer survivorship care to describe a patient-centered approach to quality survivorship care.

Methods

We conducted 22 focus groups with 170 adult survivors of breast, prostate, and colorectal cancer from six cities across the country and online. We used thematic analysis to identify participants’ principles and priorities for quality survivorship care.

Results

Based on our analysis of a limited group of cancer survivors, we identified two core principles that underlie participants’ expectations for survivorship care and 11 practice priorities that reflect opportunities to improve patient-centeredness at the individual, interpersonal, and organizational levels. The principles reflect participants’ desire to be better prepared for and equipped to accept and manage their chronic care needs post-cancer treatment. The priorities reflect practices that patients, providers, and cancer centers can engage in to ensure survivors’ goals for post-treatment care are met.

Conclusions

Results from the study suggest the need to expand conceptualization of high-quality survivorship care. The survivor principles and practice priorities identified in this study challenge the field to organize a more patient-centered survivorship care system that empowers and respects patients and provides a holistic approach to survivors’ chronic and long-term needs.

Implications for Cancer Survivors

Quality cancer survivorship care must reflect patients’ priorities. The findings from this study can be used to develop a patient-centered framework for survivorship care that can be used in conjunction with quality guidelines to ensure survivorship care is organized to achieve both clinical and patient-centered outcomes.

Appendix I. Focus Group Guide

Evaluating cancer survivorship care models: focus group guide.

Welcome participants

Hello, my name is _____________. I work at The George Washington University in Washington, DC. We are here conducting a study on health care for cancer survivors in order to improve the care and services that survivors get after their treatment has ended. Our hope is to make recommendations that can be used by physicians to make sure the care they provide meets the needs of patients after their treatment or surgery has ended.

• 1. Explain the project

  • As you know, cancer patients have many physical, psychosocial, practical, and informational needs that may show up months, years, or decades after treatment ends;

  • But the current health care delivery system is not necessarily equipped to help with these issues because it is focused more on treatment rather than on the long-term, follow-up care you need after treatment has ended.

  • Right now, health care systems make a lot of assumptions about what patients need AFTER their treatment has ended. But we want to find out from patients themselves what is most important to them when it comes to the care they get POST-treatment.

  • So, we are going to ask you about

• what physical and psychological health problems you are still dealing with,

• what types of doctors you see most in your post-treatment care,

• how well they coordinate with each other,

• what the transition was like from your oncologist to your primary care doctor,

• what problems you are having getting the care you need and.

• what you would like to see the health care system provide to survivors.

• Ultimately, our hope is the information you give us will help improve long-term health care for patients in the post-treatment phase of life.

Evaluating Cancer Survivorship Care Models is the product of a joint collaboration between the George Washington University (GW) Cancer Institute, GW School of Public Health and Health Services, and the GW Medical Faculty Associates and is funded by the Patient-Centered Outcomes Research Institute.

Purpose of Focus Groups

• We are collecting data on survivorship care through focus groups like this one, where we go out into the community to talk to patients who have survived cancer so we can better understand their experiences.

• We are interested in what you have to say because you are the experts on this topic and your opinion and perspectives matter to the success of our project. Thank you for coming.

• 2. Ground rules and procedures for confidentiality:

• 3. Ground rules:

  • The discussion in this group is confidential and voluntary. That means that we will not be connecting your name with what you say and your personal information will not be available to anyone outside the study team.

  • Because this is a group discussion, we ask that all who participate respect the privacy and confidentiality of the group and not discuss personal information about people in the room.

  • This is not an educational or support group. We are not doctors or medical staff and cannot make suggestions about your health or health care. We would like to hear about your experiences getting care as a survivor and where you might be experiencing problems.

  • There are no right or wrong answers. Feel free to speak openly and give your own opinions.

  • We need to hear from everyone. We want to give everyone an opportunity to talk about each topic, so each person needs to be somewhat brief. I may also ask people who are quieter than others if they would like to share an experience with the group.

  • I may sometimes need to stop you so that we can get back on focus and get through our topics.

  • This discussion will be audio-recorded for accuracy.

  • This group is not connected with any specific health care facility, provider, or funder and will in no way impact your ability to get care.

  • Please feel free to speak openly and candidly about the questions we ask you.

  • We expect this meeting to last approximately 1 1/2 h.

  • To show you our appreciation, we will give you a $50 gift card. Please be sure to sign for the card.

  • Usually people enjoy these groups as an opportunity to talk with others. Please relax and be as open as possible.

Icebreaker

Before we get started, I want to define some terms we will be using throughout the discussion. We will often refer to survivors of cancer and survivorship care.

• What we mean by a survivor is a cancer patient who has been diagnosed but has completed active treatment (like surgery, chemotherapy, or radiation). Survivors may still be taking maintenance treatments (like hormone therapies) but active treatment is done. What we are interested in learning about is your health care and lifestyle post treatment as a “survivor.”

• When we talk about survivorship care, we are talking about the follow-up medical care and clinical services that you need and use now that your treatment has ended. This care may be needed because of side effects from your treatment or long-term physical or emotional effects from the cancer. The care may be provided by your oncologist or other doctors you see for these issues.

• 1. Now, to kick off our discussion I would like to go around the room and ask each of you to tell us your name (first name only) and how long you have been a survivor.

Domain 1: Survivors state of health

Let us start the discussion by talking about some of the health and non-health issues you may still be dealing with since your treatment ended for your cancer.

• 1. Please describe the most challenging medical and/or psychological issues you have faced since the end of your treatment

  Probes:

  • a. Medical/physical problems

  • b. Mental health/psychosocial concerns

  • c. Practical issues, e.g., financial issues, employment problems

• 2. Do you feel that these needs are being adequately addressed by the health care system? Why or why not?

Domain 2: Survivors priorities for survivorship and gaps in care

Let us specifically talk about what you want out of the health care system now that you are no longer in active treatment.

• 1. What specific health care services have you needed since your treatment has ended?

• 2. What types of care have you found especially helpful? Why?

• 3. Have there been any health care services you did not get but thought you needed?

  Probe:

  • a. What kept you from getting these services?

• 4. Many hospitals have survivorship programs that are specifically designed to help cancer patients deal with their health care needs after treatment has ended. What types of services do you think these programs should have that would be helpful to you?

  Probes:

  • a. Let participants answer first. Then ask—Would you like a program that includes: (group services by tiers talking about 3 or 4 at a time).

  • b. Why (or why not) would you like this type of care? Are these services available through other resources in the community?

• 5. Let us say your doctors wanted to develop a strategy of medical care to help you stay healthy now that you are a cancer survivor

  • a. Who should be involved in the development of that strategy? Who should be in charge?

  • b. When should the strategy be developed? E.g. during treatment, right after treatment, 1 year following the end of treatment

  • c. What kind of information and instruction would you like to have included in the strategy?

  • d. How often should you meet with providers as part of your survivorship care

  • e. How would you like the strategy to be documented or discussed with you? E.g. a formal written plan that can be shared among patient and all providers

  • f. How long/how many years should the strategy cover?

  • g. Any other information

Domain 3: Survivors perception of care team

Now we are going to talk about how well your doctors coordinate with each other and with you about your care. We want you to think about all the doctors and health care providers you see now that treatment has ended. This may include your oncologist, your primary care doctors, any mental health care providers, doctors you may be seeing for other chronic illnesses or for side effects associated with your cancer or treatment, or any other providers.

• 1. Before you developed cancer what types of health care providers did you go to for your general medical care. How regularly did you see that provider? Did you have a supportive and ongoing relationship with that provider? Please describe.

• 2. Now, think of all the types of doctors you are currently seeing to help you manage all your health care issues now that active treatment for your cancer has ended?

  Probe: How many of you are regularly seeing (within the past year) …. (show hands)

  • a. Oncologist, radiation oncologist, and/or oncology surgeon

  • b. PCP, which would include NPs and PAs

  • c. Behavior health care provider

  • d. Other specialist—e.g. neurologists

  • e. Nurse practitioners

  • f. Nurses

  • g. Physician assistants

• 3. How well do you think these physicians work together to provide your care?

  Probe:

  • a. Do they communicate regularly?

  • b. Do they transfer records and share follow-up plans?

  • c. Do they have clearly defined roles?

• 4. Which of these providers do you rely on most to help you when you have health concerns now that your treatment has ended? Who manages your overall care now? Why?

• 5. Now that you have completed active treatment, what roles and responsibilities do you want your oncologists to have in your follow up care? Your primary care physicians

• 6. Think about transitioning your care from your oncologist to your primary doctor. What do you think needs to happen so that you feel comfortable transitioning your care from your oncologist to your primary doctor or provider

  Probes:

  • a. A formal transition process or appointment

  • b. A formal survivorship plan and treatment summary

  • c. Clear specification of who manages your overall care plan

  • d. Discussion of referrals back and forth

  • e. Discussion of how coordination/communication works between primary and specialty care

  • f. Any special programs/initiatives to improve continuum of care

Domain 4: Survivors sense of self-efficacy in managing their health post-treatment

Now, we are going to talk about how well you think you can manage your long-term health now that treatment has ended and what the health care system can do to help support you.

• 6. After treatment ends there are a number of things cancer patients should be aware of to make sure they stay healthy. What kinds of things should you be watching out for post-treatment?

  Probes: For example,

  • a. Do you know which health care providers to call if you have questions about different health concerns or about secondary medical issues?

  • b. Do you feel you know what symptoms or problems to be looking out for

  • c. Do you know how frequently you should be having follow-up appointments

  • d. Do you know when you should get your next screening?

  • e. Do you know what health promotion and risk reduction steps you should be taking—e.g., healthy behaviors such as exercise, healthy eating

• 7. How are you keeping track of these things?

  Probes:

  • a. What things have you found confusing?

  • b. Who is helping you with this?

• 8. What would help you feel prepared for what to expect from your care in the next year to 5 years

Domain 5: Elements of high quality survivorship care

• 1. What do you think are the most important elements of really good survivorship care?

Probes:

a. Explore elements of medical home.

• 2. If you could change anything about your health care post treatment, what would it be?

Wrap Up

Please remember to respect the privacy of what we have talked about in this group and not share specific personal information about participants outside of this room.

Also, if you are interested in learning more about the study or finding out what we discover from these groups, please go to the website listed at the end of your information sheet, which is included in the envelope with your gift card. Or you can email us at survivorship@gwu.edu with your contact information.