Focus group documentation

Appendix 2: Interview guide

(Living document, adapted after each focus group)

Inhalt

Readers guide

Part 1: Welcome

Part 2: Intense discussion of “effectiveness” and “side effects”

Part 3: Discussion of attributes

Part 4: Ranking of attributes

Part 5: Finalization

Readers guide

The interview guide presents the procedure, which was used throughout the focus group interviews. The following notes should facilitate understanding of the guide

Text written in blue: headings and additional information for the reader, especially regarding adaptations of the interview guide that were part of the iterative interviewing process

Text written in black: Information provided orally during the focus group interviews

Text written in green: anticipated reactions from patients and activities during focus group

Part 1: Welcome

Note: Part 1 is to welcome participants and introduce the focus group procedure and rules

We warmly welcome all of you (the participants) to our focus group today. My name is Marion Danner (moderator) and assisting me is Vera Vennedey (co-moderator). Thank you for taking the time to join us to talk about the characteristics of your AMD treatment today. The term „focus group“ means that several issues are discussedin a group setting, with a moderator – myself in this case - structuring the discussion. In this discussion we ask you to communicate and discuss your thoughts about and experiences with certain aspects of your AMD treatment with us.

We have prepared name tags for all of us. These will make it easier for us to remember names and be able to directly address each other.

Introduction to the topic and to the procedures / rules

Today, we would like to learn more about what is important to you in your treatment of AMD and how important certain treatment characteristics are compared to others. Before starting with the focus group discussion, however, we would like to explain to you how we would like to proceed.

The focus group should be an open exchange of thoughts and ideas. For all questions and treatment characteristics that will be discussed, there are no rightor wrong answers, but rather differing points of view. Please feel free to share your point of view even if it differs from what others have said. We are very interested in your thoughts and encourage you to very openly communicate them to us.

All information that you share with us today will be treated confidentially. All summaries and evaluations of today’s discussions will be anonymized, i.e. without reference to names. We would also like to ask each of you to treat the information you hear from other participants today with confidentiality.You have probably noticed the audiotape. We would like to inform you that we would like to audiotape the discussion to ensure that we are not going to lose any information and can evaluate the expressed thoughts and ideas in a structured way afterwards.

To make sure that we understand each of you adequately throughout the discussion and to be able to understand what is said on the audiotape, we would very much appreciate to always only have one person speaking at a time. Therefore, we would ask you to always let participants finish their contributions.

Before we start, maybe we could first introduce ourselves to the other participants. Please also shortly state how long you have been suffering from AMD and how many injections you had up to now.

(Introductory round, one by one)

Our goal now is to find out which treatment effects and characteristics are important to you in your AMD treatment. In preparation of these focus groups we have more intensely looked into the treatment alternatives in AMD and have identified a number of treatment characteristics that might be more or less important to you. We will first focus on two treatment characteristics that we will discuss more intensely. Then, we will talk about the other treatment characteristics one by one. (After first two focus groups the wording of the latter two sentences changed to: “First, we will present to you one treatment characteristic and then ask you one by one and in changing order to communicate your thoughts to us in a very open manner. Then, we will provide some further information on the treatment characteristic to you and then again have you comment on the role that this characteristic plays in your treatment or treatment decision”). Treatment characteristics will be presented to you on the dashboard in the front in large letters, we will also read these out loudly to you.

Part 2: Intense discussion of “effectiveness” and “side effects”

Note: Part 2 is to elicit patients‘ thoughts and ideas about AMD treatment effect and side effects; this part was only done in the first 2 focus groups. The attributes visual function and side effects were given more time and effort to answer more complex open questions. From focus group 3 on we merged the attributes visual function and side effects and their levels with the others undergoing the procedure described in part 3. For the attribute visual function only scenario 2 is included in Part 3 since the first two focus group interviews revealed that this scenario reflects the patients’ comments most closely.

  1. Effectiveness: What do you expect from your AMD treatment?(Most important treatment goal for you personally?)

Expected answers (based on preliminary literature review/expert interviews):

Scenario 1: visual function = reach specific level of visual acuity (e.g. 10-30%, 30-60%, 60-90%)

Scenario 2: improvement/stabilization/no deterioration of visual function

Scenario 3:

  • maintain cognitive function (e.g. be able to read, write)
  • maintain physical mobility (e.g. move around, climb stairs)
  • be able to do daily activities (e.g. cooking, home keeping)
  • be able to engage in social activities (e.g. meet friends, recognize faces)

Scenario 4: other defined treatment goal(s)?

Rationale:

-identify most important treatment effect for patients in an open manner

-trace expressions/examples used by patients

-Once the most important treatment goals have been revealed, provide further information and discuss again – one by one - , to elicit information on specific levels / examples / patient wording or definitions

1.1Intensified discussion of Scenario 3 – dimensions of quality of life are presented to patients and are discussed one by one (this discussion was only conducted in first two focus groups)

What do you think about the following aspects of your personal quality of life with respect to your AMD disease and its treatment?

Different aspects of scenario 3 are displayed on the dashboard and discussed.

Rationale:

-Find out whether it is „visual function“ per se that patients want to change (stabilize) with treatment or what they can do with this function

-Should we include the dimensions of quality of life as levels / subcriteria in the DCE/AHP? (Initially, one idea to structure attributes / levels was to include the QoL dimensions as levels in the DCE / subcriteria in the AHP to operationalize treatment effect)

  1. Side effects: Which side effects of treatment do you know?
  2. associations with the attribute side effects
  3. explain known risks for side effects in more detail and then ask again about the role of these in their treatment decisions, which are considered more/less important

Rationale:

-Find out whether any side effects apart from the ones we identified in the literature search were relevant and which of those identified were more/less relevant to patients, for which reasons.

-Find out more about which type of risk communication patients can best understand (numbers, graphs) and which size these should have.

-Capture examples of side effects that patients experienced most often, if any

Part 3: Discussion of attributes

Note: Part 3 is to elicit patients‘ thoughts and ideas about the potentially relevant treatment characteristics. In each focus group, these characteristics were presented to patients. This was done in changing order, not to suggest that the first shown characteristics are considered more important than others.

As explained in the introduction, we are now moving to some other treatment characteristics that we would like to discuss with you in more detail. From our previous literature search and our interviewing physicians and nurses at the clinic, we have identified some treatment characteristics that might also play a role in your treatment / treatment decisions. These are the following:

  • Injection frequency
  • Monitoring frequency
  • Cost to health insurance
  • Cost to the patient
  • Drug approval status

Apart from these, we would appreciate if you could mention any additional treatment aspects that might play a role in your treatment decisions or your might think or worry about.

Characteristics are displayed on the dashboard and discussed.

Procedure for each attribute:

Step 1: Which thoughts do you have on the following treatment characteristic?

  • One by one, patients provide their associations with the attribute

Step 2: Presentation of our information on the attribute (see below)

Step 3: Which role does the attribute play in your treatment / treatment decision?

  • One by one, patients reflect again on the attribute (goal: identify more detailed preference structures)followed by group discussion

Patientsorally receive the following information on treatment characteristics in Step 2 (see above):

Injection frequency

For any of the currently existing drugs, the treatment is initiated with three monthly injections. Afterwards one treatment alternative is continued with regular monthly injections.Another treatment is injected in irregular intervals. The need to receive another injection is always determined at monthly monitoring visits. Forthe third treatment, injections are necessary every second month. Maybe in the future drugs with different injection intervals will become available. After fist two focus groups the following information was added: “Less frequent injection intervals do not imply lower medication efficacy and vice versa”

Monitoring frequency

Frequency of monitoring describes how often you have to undergo assessment with optical coherence tomography and vision test. After first focus group the wording of the explanation changed to: “After each injection, two follow-up monitoring visits are scheduled (2 and about 10 days after the injection) to make sure that the injection did not cause any complications. When we are talking about monitoring visits we do not refer to these follow-up examinations. We refer to the monitoring visits that are performed to monitor the course of your disease. The examinations usually include an optical coherence tomography (added information after second focus group: photo of the eye) and/or a vision test (eye test). These examinations can take place every month, every two months or even less frequently.

Costs to health insurance

Two of the treatment alternatives cost around 1300€ and one of the treatment alternatives costs around 40€ to the health insurance.

Costs to the patient

Costs that patients have to cover by themselves include e.g. travel expenses or the time you spend at the clinic.

Approval

Two of the drugs were approved for the treatment of age-related macular degeneration.The third drug was initially developed for the treatment of different cancers and is not officially approved for the treatment of AMD.This drug, however, also seems to be equally effective and safe as the first two for the treatment of AMD. Therefore, doctors are allowed to administer this drug after providing intense information and most statutory health insurance companies also pay for this drug.

(Since patients experienced problems to understand the concept of approval we worked with a graphical presentation (see document “18_11_2014_AMD focus groups_material”) of the concept in the last three focus groups. Patients seemed to better understand approval then and to be better able to separate approval from cost and from effectiveness. Verbal explanation followed the lines of the graph)

Visual function

Drugs focus on stabilization, temporarily limited improvement is possible, AMD is a chronic progressive disease with low chance of cure (No further information provided, as defining this attribute with the patients was one of the aims of the interviews)

Side effects (oral explanation of risk graphs)

See document: 18_11_2014_AMD focus groups_material

Part 4: Ranking of attributes

Note: Part 4 is to get a ranking of treatment characteristics by patients to gain first insights into the patients’ priorities

Initially the ranking was done with all seven attributes. Patients had difficulties to do the ranking task since the ranking of seven cards appeared to be cognitively very demanding forthem. Therefore, from the second focus group on, patients were asked to sort out the two least important attributes first and then do the ranking only for the five remaining attributes.

(Distribute hand cards)

You just received 7 hand cards, on which all attributes we discussed are written down. Please first put aside the two least important ones. Then, bring the remaining 5 hand cards into the order from most to least important. The most important one should be at the top, the least important ones at the bottom. We are pleased to help you with this….

(Enter priorities into priority table; together with the patient and double check)

Part 5: Finalization

Thank you for your participation in our focus groups today. We very much appreciate that your shared your thoughts with us and have learned a lot from you today.