Developing a prototype web-based decision aid for adults with hearing loss

Abstract

Objective

To develop a prototype of a decision aid to be used on a website for adults with hearing loss. Design: Development was guided by the International Patient Decision Aid Standards (IPDAS) and included a survey and think-aloud process.

Study sample

A total of 153 participants completed a survey about what to include in the decision aid (111 adults with hearing loss, 21 family members of adults with hearing loss, and 21 professionals). Six adults with hearing loss and six family members participated in a think-aloud process to provide feedback as they used an initial version of the decision aid.

Results

In the survey, 26 of the 38 potential items were identified as being highest priority and were included in the initial version of the decision aid. This initial version was then tested in the think-aloud sessions and a prototype of a web-based version was developed based on participant responses related to: 1) information on the decision aid, 2) ease of use, 3) layout and orders of the items, 4) satisfaction, 5) areas for improvement (e.g., need for graphics).

Conclusions

The methodologies used in this study are recommended for developing decision aids for adults with acquired hearing loss.

Keywords:

• Decision aid
• hearing loss
• think-aloud
• help-seeking

Introduction

It is well known that adults with acquired hearing loss typically wait years before taking action to address their hearing difficulties. In a recent US study, Simpson et al. (2019) reported an average delay of 8.9 years between first recognising hearing difficulties and seeking help for hearing problems. Untreated hearing loss is associated with negative quality of life impacts including loneliness, social isolation (Shukla et al. 2020) and depression (Lawrence et al. 2020) for people with hearing loss, as well as for their families (Scarinci, Hickson, and Worrall 2011). A range of effective interventions for hearing loss are available, including communication training, hearing aids, cochlear implants, and ‘over the counter’ amplification devices. One approach that may facilitate earlier uptake of interventions for hearing loss, and reduce excess burden due to delays seeking help, is the development of a decision aid that identifies hearing intervention options in terms that are readily understandable to the public.

Used widely in other areas of healthcare (see further information and resources at www.ipdas.ohri.ca), decision aids provide individuals with a summary of options for their health condition, including the evidence about those options, as well as clarifying patient values that may impact the decisions they make. A key tenet of decision aids is that treatment options are presented to patients and their families in a ‘balanced’ manner, identifying pros and cons of any option. Following a literature review of the use of decision aids, Abhyankar et al. (2013) defined balance as “… complete and unbiased presentation of the relevant options and the information about those options – in content and in format – in a way that enables individuals to process this information without bias” (4). Decision aids can be created in many different formats (e.g., paper, video, web-based) and thousands have been developed for use in clinical settings (Stacey et al. 2017), including in audiology for adults with hearing loss or tinnitus (Laplante-Lévesque, Hickson, and Worrall 2010; Pryce et al. 2018).

Decision aids can also facilitate shared decision-making in clinical contexts and shared decision-making is a central element of providing person and family-centred care for people with hearing loss (Hickson et al. 2019a). Decision aids do not replace the clinician, however a Cochrane review of the application of over 100 decision aids indicates that they do help to prepare consumers and their families to make decisions about care (Stacey et al. 2017). Laplante-Lévesque, Hickson, and Worrall (2011) developed a decision aid for older people who were considering taking action about their hearing difficulties for the first time. Four intervention options were discussed with each person face-to-face (and their significant others if available) and the key information about each option was summarised in a brief written description using simple and accessible language. Options were: hearing aids, a group communication education program (Hickson, Worrall, and Scarinci 2007a), an individualised communication program (Hickson et al. 2019b) and no intervention. For each option, there was a summary of what is involved and what is expected, as well as the advantages and disadvantages of each option. Qualitative interviews suggested that this decision aid was positively received by participants; for example, one 81 year old said “That’s a better thing: to make the patient decide, to give options” (Laplante-Lévesque, Hickson, and Worrall 2010, 36). A limitation of this early work is that the decision aid was developed by the research team with little input from end users. Since that time International Patient Decision Aid Standards (IPDAS; Sepucha et al. 2018) have been introduced that highlight the importance of consumer involvement in developing decision aids.

Using the IPDAS as a guide, Pryce et al. (2018) described development of a decision aid for people with tinnitus that included input from end users throughout. The project began with in-depth interviews of people who had sought help for tinnitus and concluded with user testing of the decision aid. Clinician stakeholders (ENTs, audiologists, and hearing therapists) were also involved as it is known this may increase the likelihood that decision aids will be used by clinicians in real-world settings (Witteman, Maki, et al. 2021). Subsequently, Pryce et al. (2022) reported on a service evaluation of the new tinnitus decision aid in four clinical sites across the United Kingdom. The decision aid was found to facilitate active decision making by patients in these audiology clinics, a finding that is in line with previous research on the use of decision aids to facilitate shared decision-making in healthcare generally (e.g., Stacey et al. 2017; Vlemmix et al. 2013).

The impetus for the current study was a review of the Australian Government’s Hearing Services Program in 2021 that identified the need for decision support tools on the Hearing Services Program website (Australian Government Department of Health and Aged Care 2023) “to assist prospective clients to make informed choices about managing their hearing loss” (Woods and Burgess 2021, 6). In response, the aim of the current study was therefore to apply the IPDAS to develop a prototype web-based decision aid for adults who were seeking information about intervention options for hearing loss. The decision aid would focus on helping adults decide if they were ready to take action for their hearing loss or not at, and if so, information would be provided about next steps.

Materials and methods

Design

In developing the decision aid we followed the checklist for User- and Human-Centered Design for Personal Health Tools (UCD11; Witteman, Vaisson, et al. 2021) recommended by IPDAS (see Table 1). In summary, an initial version of the decision aid was developed based on the results of a survey of key stakeholders (adults with hearing loss, family members and professionals who work with adults with hearing loss). Subsequently, a prototype for web implementation was completed following feedback from potential end users (adults with hearing loss and family members) using a think-aloud process.

Table 1. Checklist for user- and human-centered design for personal health tools (UCD11; Witteman, Vaisson, et al. 2021).

Factor and Items	Work undertaken in this study
Factor: Pre-prototype involvement 1. Were potential users involved in any steps to help understand users and their needs?	Online survey to understand the needs of adults with hearing loss (n = 153), family members (n = 21), and hearing care professionals (n = 21).
2. Were potential users involved in any steps of designing, developing, and/or refining a prototype?	Potential users were involved in designing, developing, and refining the decision aid in think-aloud sessions (n = 12).
Factor: Iterative responsiveness 3. Were potential users involved in any steps intended to evaluate prototypes of the tool or a final version of the tool?	The web design team and an experienced audiologist provided feedback on the initial decision aid. It was then tested using think-aloud.
4. Were potential users asked their opinions of prototypes of the tool or a final version of the tool in any way?	After the think-aloud process, we asked participants’ opinions (n = 12).
5. Were potential users observed using the tool in any way?	In think-aloud, the initial decision aid was shared with each participant via Zoom and observed by the researcher.
6. Did the development process have 3 or more iterative cycles?	We had several iterative cycles with the Department* staff and the web design team.
7. Were changes between iterative cycles explicitly reported in any way?	The changes between iterative cycles were reported to the Department* in regular meetings.
Factor: Other expert involvement 8. Were health professionals asked their opinion of the tool at any point?	The Department*, their web design team, and an experienced audiologist were asked their opinions.
9. Were health professionals consulted before a first prototype was developed?	This research was undertaken in response to consultation with health professionals who wanted a prototype (Australian Government Department of Health and Aged Care 2023).
10. Were health professionals consulted between initial and final prototypes?	An experienced audiologist was consulted between the initial version of the decision aids and the final prototype.
11. Was an expert panel involved?	An expert panel of web designers, an audiologist, and staff from the Department* provided regular advice. As the research team had published decision aids and were experts in the development of hearing rehabilitation options and support tools, including decision aids, an additional expert panel was not used.

* Note: Department: Department of Health and Aged Care in Australia

Participants

All participants were recruited via social media and word-of-mouth.

Survey

A total of 153 participants (out of 267 people who accessed the information about the study online) consented and completed the survey about what to include in the decision aid. The 111 adults with self-reported hearing loss ranged in age from 25 years to 86 years old (Mean = 67, SD = 11); the majority were female (n = 84, 78%). In addition, the survey was completed by 21 family members of adults with hearing loss (20 females, 1 male) ranging in age from 22 years to 74 years old (6 partners/spouses, 4 friends, 7 parents, 1 sister, 1 grandmother, 1 uncle, 1 aunt), and 21 professionals who had experience working with adults with hearing loss (17 audiologists, 1 audiometrist, 1 teacher of the deaf, 1 nurse, 1 deaf researcher). The professionals (12 females, 9 males) ranged in age from 25 years to 69 years old (M = 43.38, SD 14.77) and had 1 to 47 years of experience working with adults with hearing loss (M = 17.24, SD = 14.41). The majority worked in private organisations (12, 57.1%), followed by public health settings (4, 19%), not-for-profit (3, 14.3%), education (1, 4.8%), and tertiary settings (1, 4.8%).

Think-aloud

Participants were 6 adults with hearing loss and 6 family members of adults with hearing loss). There were 8 females and 4 males ranging in age from 28 years to 81 years old (M = 50.75; SD = 18.06). Of the six adults with hearing loss, five had 1-5 years and one adult had 6-10 years’ experience of hearing loss. The study included two dyads consisting of an adult with hearing loss and her sister, as well as an adult with hearing loss and her husband.

Procedures

Survey

A list of 38 items was prepared based on previous literature and the IPDAS. Interested participants were directed to the online Qualtrics platform to answer screening questions and provide consent. They were told the aim of the study (i.e., to develop a decision aid to assist adults to make informed choices about managing their hearing loss) and then asked to indicate their level of agreement regarding the possible inclusion of each item in a decision aid (see Table 2).

Table 2. Survey items and rating obtained from the participants (N = 153: 111 adults with hearing loss, 21 family members, 21 professionals).

	Limited importance						Important but not essential						Essential
Items	1		2		3		4		5		6		7		8		9		N	Mean	SD
	%	n	%	n	%	n	%	n	%	n	%	n	%	n	%	n	%	n
A) Information about hearing loss
1. What are the signs of hearing loss?	2.61	4	0	0	0	0	3.27	5	3.27	5	3.27	5	7.84	12	9.15	14	70.59	108	153	8.15	1.73
2. What are the impacts of hearing loss on everyday life?	1.32	2	0	0	0	0	0	0	4.61	7	2.63	4	6.58	10	16.45	25	68.42	104	152	8.34	1.34
3. What causes hearing loss?*	3.97	6	1.32	2	1.32	2	2.65	4	15.89	24	10.60	16	13.91	21	9.27	14	41.06	62	151	7.05	2.16
4. What are the different levels of hearing loss?	0.66	1	0	0	0	0	1.97	3	5.26	8	7.89	12	22.37	34	14.47	22	47.37	72	152	7.81	1.45
5. What are the guidelines for managing hearing loss?	0	0	0.67	1	0	0	2.00	3	6.67	10	2.67	4	12.67	19	18.67	28	56.67	85	150	8.07	1.4
6. What do experts suggest for managing hearing loss?	0.67	1	0.67	1	0.67	1	0.67	1	5.37	8	8.05	12	11.41	17	15.44	23	57.05	85	149	7.99	1.53
7. How do other adults manage their hearing loss? [videos]	0.66	1	0.66	1	0	0	0.66	1	17.22	26	9.93	15	20.53	31	10.60	16	39.74	60	151	7.36	1.68
B) Information about first appointments
8. How do I make an appointment for my hearing loss?	0.66	1	0	0	0.66	1	1.99	3	5.30	8	3.97	6	10.60	16	11.92	18	64.90	98	151	8.15	1.48
9. Will the appointment be face to face or by telehealth?	3.38	5	0	0	2.70	4	0.68	1	18.24	27	5.41	8	9.46	14	8.78	13	51.35	76	148	7.36	2.12
10. What questions should I ask in the appointment?	1.32	2	0	0	1.32	2	1.32	2	9.27	14	7.28	11	17.22	26	15.89	24	46.36	70	151	7.66	1.68
11. How do I involve family and friends in the appointment if that is my choice?*	2.70	4	0.68	1	2.70	4	3.38	5	20.95	31	15.54	23	11.49	17	14.86	22	27.70	41	148	6.72	2.01
12. What happens in a hearing test appointment?	1.33	2	0	0	2.00	3	0.67	1	6.00	9	9.33	14	14.67	22	13.33	20	52.67	79	150	7.79	1.67
C) Information about options for hearing difficulties
13. What options are available for people with hearing difficulties?	0	0	0	0	0	0	0	0	3.97	6	0	0	5.96	9	16.56	25	73.51	111	151	8.56	0.92
14. What is involved in each option?	0	0	0	0	0.68	1	1.35	2	6.76	10	5.41	8	9.46	14	16.89	25	59.46	88	148	8.1	1.37
15. What is expected from the person with hearing difficulties in each option?	1.32	2	0	0	1.32	2	1.32	2	13.91	21	8.61	13	12.58	19	15.89	24	45.03	68	151	7.52	1.77
16. What are the positives and negatives of each option?	2.03	3	0	0	0.68	1	1.35	2	9.46	14	4.73	7	8.11	12	15.54	23	58.11	86	148	7.89	1.75
17. What medical treatments are available for hearing loss?	2.00	3	0	0	0.67	1	1.33	2	4.67	7	4.00	6	13.33	20	20.67	31	53.33	80	150	7.95	1.61
18. What if a person does not want any of the options?*	4.76	7	0	0	2.72	4	1.36	2	23.81	35	5.44	8	12.24	18	12.93	19	36.73	54	147	6.9	2.21
19. What if a person wants more than one option?*	1.32	2	0.66	1	2.65	4	1.32	2	18.54	28	11.92	18	11.92	18	16.56	25	35.10	53	151	7.12	1.9
20. What is a hearing aid?	2.68	4	0	0	3.36	5	0.67	1	11.41	17	5.37	8	10.74	16	13.42	20	52.35	78	149	7.58	1.99
21. What is a cochlear implant?	2.67	4	0	0	0.67	1	1.33	2	7.33	11	10.67	16	14.00	21	18.00	27	45.33	68	150	7.61	1.79
22. What are assistive listening devices?	0.67	1	0	0	2.00	3	2.00	3	5.33	8	7.33	11	13.33	20	20.67	31	48.67	73	150	7.82	1.58
23. What is communication education?*	1.35	2	2.03	3	1.35	2	2.03	3	14.19	21	11.49	17	14.19	21	16.89	25	36.49	54	148	7.2	1.91
24. How to learn sign language?*	7.33	11	2.67	4	3.33	5	4.67	7	26.67	40	10.00	15	16.67	25	9.33	14	19.33	29	150	6	2.3
25. How to learn lip reading?*	5.30	8	2.65	4	3.97	6	3.31	5	21.19	32	13.25	20	15.23	23	13.25	20	21.85	33	151	6.3	2.24
D) Information about the available funding
26. What funding is available for hearing treatments (e.g., Hearing Services Program)?	0	0	0	0	0	0	1.32	2	3.31	5	1.32	2	5.96	9	13.25	20	74.83	113	151	8.51	1.05
27. Who is eligible for funded hearing services?	0	0	0	0	0	0	1.32	2	1.32	2	1.32	2	5.96	9	13.25	20	76.82	116	151	8.59	0.93
28. How to apply for funded hearing services?	0	0	0	0	1.32	2	1.99	3	1.99	3	2.65	4	2.65	4	14.57	22	74.83	113	151	8.46	1.22
29. What if the person with hearing difficulties is not eligible for funded hearing services?	0	0	0	0	0	0	0.67	1	4.00	6	1.33	2	10.00	15	14.67	22	69.33	104	150	8.42	1.07
30. How to find clinicians who provide funded hearing services?	0	0	0	0	1.32	2	0.66	1	6.62	10	2.65	4	5.96	9	14.57	22	68.21	103	151	8.28	1.34
31. What are the steps (pathway) to get help?	0	0	0	0	0	0	0.66	1	2.65	4	4.64	7	8.61	13	12.58	19	70.86	107	151	8.42	1.07
E) Information about the process of getting hearing devices and ongoing support
32. What are ear impressions and ear moulds?*	5.96	9	2.65	4	4.64	7	1.99	3	11.92	18	7.95	12	15.23	23	14.57	22	35.10	53	151	6.79	2.41
33. What happens in the fitting appointment?*	5.30	8	2.65	4	1.99	3	0.66	1	11.26	17	11.26	17	16.56	25	14.57	22	35.76	54	151	6.97	2.26
34. What happens in a follow up appointment?*	4.70	7	4.03	6	2.01	3	0.67	1	10.07	15	12.75	19	16.78	25	14.09	21	34.90	52	149	6.93	2.27
35. What happens in an annual review?*	5.44	8	1.36	2	2.04	3	0.68	1	12.93	19	9.52	14	15.65	23	17.69	26	34.69	51	147	7.02	2.21
36. What supports are available to cope with hearing loss?	0	0	0	0	0	0	1.99	3	3.97	6	5.96	9	8.61	13	17.88	27	61.59	93	151	8.21	1.25
37. How to connect with other people with hearing loss (peer support groups)?*	1.33	2	1.33	2	2.67	4	6.00	9	22.67	34	8.00	12	20.00	30	12.67	19	25.33	38	150	6.67	1.95
38. What are the costs and benefits of a hearing aid maintenance agreement?	2.01	3	0.67	1	0.67	1	0.67	1	8.72	13	5.37	8	12.08	18	14.09	21	55.70	83	149	7.83	1.78

* Items that did not reach the cut-off level of agreement of 70% or more.

Responses were obtained using a 9-point Likert scale with “1” meaning that the item did not need to be included and “9” indicating that the item must be included. A modified version of the Grading of Recommendations Assessment, Development and Evaluation (GRADE) 9-point rating scale was used (see http://www.gradeworkinggroup.org). On this scale, 1–3 is of limited importance, 4–6 is important but not essential, and 7–9 is essential (Wallace et al. 2016). A ‘level of agreement’ for each item was calculated in terms of the percentage of respondents that agreed these items were essential (ranking 7, 8, 9 on the Likert scale). Items that reached the cut-off level of ≥70% agreement were included in the initial decision aid. The survey also contained an open-ended question asking about any other information that participants thought should be included in the decision aid. These suggestions were then grouped and the additional information most commonly suggested was included in an additional resource section of the decision aid.

Once the prioritised content of the decision aid had been determined, the initial version of the decision aid was further refined by: i) Consulting with an experienced audiologist and with the web design team who would be implementing the final product; and ii) Applying digital health literacy principles and keeping the reading level of the content to a Flesch-Kincaid grade level of approximately 6 (i.e., a person with 6 years of formal education could understand the decision aid). Elwyn et al. (2006) recommended that the reading level of decision aids should be ≤ grade 8.

Think-aloud

Think-aloud is a process-tracing method for conducting usability tests by asking participants to verbalise their thinking as they perform a set of specified tasks (Ericsson and Simon 1993). This way, the cognitive processes of participants are identified while doing a task. In this study, participants worked through the initial version of the decision aid in a session with a member of the research team (MN) on Zoom.

Although the final decision aid is to be web-based/mobile-friendly, it was not possible to have the decision aid in that format at this stage of development. Instead, participants were shown a static pdf version of the decision aid with hyperlinks to added resources. Each participant was asked to say whatever came into their minds as they used the decision aid, for example, what they were looking at, doing, thinking, and feeling. They were asked not to try to plan or explain what they said, just to act as if they were alone and speaking to themselves.

If a participant was silent for a long time (1 minute or more), the researcher reminded them to keep talking even if something did not seem grammatically correct or if they were afraid it would not make sense. At the end of the session, the researcher also asked a few overall questions: what was their view of the decision aid, what should the name of the decision aid be, was there any information missing, and how could it be improved? Field notes were kept and sessions were audio/video recorded to identify the areas where a participant was struggling and the reasons for the difficulties. Participants received a $100 gift voucher for their time.

Results

Survey

Table 2 shows a summary of the importance ratings provided by survey respondents. The number of respondents to each item varied from 147 to 153 and there was no clear pattern for missing data. Twenty-six items reached the cut-off level of agreement of ≥70% and were included in the initial decision aid. In addition, we kept three items that did not reach the 70% agreement for the following reasons:

• Item 18: What if a person does not want any of the options? The IPDAS recommends that decision aids describe the natural course of the health condition if no action is taken (Joseph-Williams et al. 2014).

• Item 23: What is communication education? Although communication education is not a well-known option for the general public, evidence shows significant improvement in communication and psychosocial well-being for people who undertake such education (Hickson, Worrall, and Scarinci 2007b; Öberg, Bohn, and Larsson 2014; Timmer et al. 2023).

• Item 33: What happens in the fitting appointment? Lack of information regarding the hearing device fitting has been found to be a reason for non-use of hearing aids (Ritter, Barker, and Scharp 2020).

In response to the open-ended question about other items to include in the decision aid, the research team categorised the suggested items into three groups: (1) new relevant items (e.g., stigma), (2) existing items in the decision aid (e.g., downside of untreated hearing loss), and (3) out of scope or not appropriate for the decision aid (e.g., GP’s role for hearing problems, pricing ranges of hearing aids, how to read hearing test results). The items in group 1 were included in the initial decision aid. No action was taken on the items in groups 2 and 3.

Based on the survey results and the IPDAS, the initial decision aid titled “Understanding my Hearing Needs Tool” was developed with the following sections:

1. Learn about hearing loss and hearing tests: information about hearing loss, signs, impacts, and levels of hearing loss; questions that could be asked in a hearing test appointment; and what happens in such an appointment.

2. Consider what matters most to you: nine statements are presented in a table and people are asked to consider what is important to them if they take action for their hearing. Example statements are “I will be able to hear better” and “I will feel happier”. For each, the decision aid user can select if the statement is “really important to them,” “somewhat important to them,” or “not important to them”.

3. Learn about the choices: information about options of hearing aids, Assistive Listening Devices (ALDs), cochlear implants, communication education and medical treatment. A brief summary of each option is provided along with responses to What is involved? What are the positives? What are the negatives? Each option is presented alongside the action of Not taking the option.

4. Make your decision: people are asked to indicate next steps with choices: “I have decided to take action for my hearing difficulties”, “I’m considering doing something for my hearing difficulties, but I need more information”, “I have already received treatment, devices, or education, but I need more help for my hearing”, “I have decided not to get help for my hearing right now”, and “I have decided to do something else”.

A short instruction on how to use the decision aid was also provided on the Home page.

Think-aloud

Participant responses when using the initial decision aid fell into the following categories: (1) information on the decision aid, (2) ease of use, (3) layout and orders of the items, (4) satisfaction with the decision aid, (5) areas for improvement. Each category is described along with any action taken based on the suggestions.

Information on the decision aid

Some parts of the decision aid were renamed based on participant feedback. For example, the name of the decision aid changed from “understanding my hearing needs tool” to “understanding hearing needs” because of two comments. The daughter of an older adult with hearing loss thought the name implied that the decision aid was only for people with hearing loss, whereas it could also be used by families:

… sounds like it’s only aimed at people who have a hearing loss, but I think it’ll be useful for family members who are dealing with people who are dealing with um hearing loss. So, I think it kind of needs to change its name. [Family 1]

An adult with hearing loss thought the word “tool” should be removed: “Do you have to use the word tool? It makes it sound terribly official. It sounds like something you’re going to be digging up the garden with something.” [Adult 2]

The names of two sections of the decision aid also changed. Section 3 changed from “learn about the choices” to “learn about the choices and funding for improving hearing”. This change was made because a participant thought it should be clear on the Home page that funding is available, and this would make people comfortable to continue using the decision aid for learning about options:

… because then someone is using this tool, the first impression they might get is, uh, okay, say, if I’m going to do something like this, if I want to do something that will have some cost impact on my life, and if they know that they have some options, or they might get some funding from government, or from their insurance, or, uh, what they have, they’ll be more comfortable to continue. [Family 5]

The name of section 4 also changed from “make your decision” to “make decisions about your hearing” as it was not clear what people were making decisions about.

Another change of name was for the column “not doing anything” that was provided for each option in section 3. The meaning of this heading was not clear for participants, so it was changed to a specific name for each option: not getting hearing aids, not getting ALDs, not getting cochlear implants, not getting communication education, and not getting medical treatment.

Given that the communication education option was not known to some participants, they suggested different names for this (e.g., learning strategies to help with communication, learning communication tactics, and hearing education). However, this was not changed as there was no agreement amongst participants about what it should be called.

While the decision aid is intended to be used by people with any degrees of hearing loss, a participant thought the links at the end of the decision aid were not appropriate for people with a mild degree of hearing loss because the name of some organisations included the word deaf (e.g., Deafblind Australia, Deaf Connect, Deaf Sports Australia):

I just kind of looked at some of these organizations and thought also they’re only for people who are deaf. But it probably maybe needs to emphasize that it’s not just for people who are deaf … it could be for people who have very mild hearing loss. [Family 3]

In response, an introduction to the links was included in the prototype web-based decision aid: “Here is the alphabetical list of organisations that may help you with your hearing difficulties. They may provide hearing tests, devices, education, and support to people with all degrees of hearing loss.”

When asked “Is there any information missing on this decision aid?” some additional items, were suggested and we included them in the prototype (e.g., a negative aspect of not getting hearing aids is that family/friends may experience frustration).

Some sentences of the decision aid were identified as repetitive by participants, and they were removed.

Ease of use of the decision aid

Participants used a pdf version of the decision aid that was long (15 pages) and not easy to use. However, it was explained that a web design team would change it to an interactive web version once the content was finalised.

The content was considered “easy to read” by most participants. For example, a family member looking at the page “learn about hearing loss and hearing tests” said: “This page gives you information about hearing loss and the relevant appointments like the items that you would like to know about, was very clear. It’s very easy to read” [Family 6]. However, one participant suggested using dot points for the introduction of each section instead of a paragraph. This change was made throughout the prototype decision aid.

Observing the participants while using the decision aid, the facilitator identified some areas that were not easy for them, were misleading or caused struggles. For example, the ALDs option was new to them, and they wanted to have more information immediately to make decisions about them before they reached the last section (“Make your decision”). The links in the initial decision aid were to a clinic website in one state of Australia (as there were no more comprehensive pages for ALDs at the time of the study), but it caused confusion as participants thought they could only get ALDs from that specific clinic. Therefore, the links were removed, and suggestions were made to the web design team that they would need to source another website for such information when the decision aid is finalised.

Layout and order of the items on the decision aid

The Home page of the initial decision aid showed four boxes for the four sections and each box had an icon on top (e.g., icon of an ear for “learn about hearing loss and hearing tests”, icon of a tick for “consider what matters to you). Participants found the icons “confusing” [Adult 2] and they were therefore removed.

Other layout and order changes made based on feedback were:

• In the section about choices, medical treatment was moved from being the first option to the last option.

• An extra function was suggested to help users navigate the web-based decision aid: “A function is needed to be included in all pages of the decision aid to let consumers go to the first page if they wanted.” [Adult 5]

At the end of the decision aid, a “print” option was provided but one participant suggested that saving the information on computer and emailing it should also be included to improve accessing the information later. This was added to the prototype.

Satisfaction with the decision aid

When asked “What is your overall view on this decision aid?”, all participants reported their satisfaction with it and that they benefitted from the information provided. Specifically, they liked that comprehensive information was available in “one place”:

It includes all useful links, all information here. [Adult 4]

So, this is a unified kind of, um, platform that gathered whatever information is available … So, this is valid point. [Family 2]

Areas for improvement

The participants provided several suggestions for further improving the interactive version of the decision aid when available on the web, for example:

• Graphics needed for all pages, specifically, for less known items such as ALDs and ear moulds: “The only thing is lacking is like, uh, you know, graphic content … they could put more colour some more, you know, 3D … to make it more, more aesthetic.” [Adult 6]

• A short video to be added to the Home page describing how to use the decision aid; videos were also suggested for each treatment option (e.g., hearing aids, medical treatment): “I liked it more if it was like, like a video. It was more attractive.” [Adult 5]

• In the initial decision aid, consumers could compare each option with the option of not getting that option (e.g., not getting hearing aids). It was suggested that this column have a drop-down function. So only those who might be interested in doing nothing can select that option.

• A list of online hearing tests should be available on the website and linked to the decision aid for the item in section 1: How can I test my hearing online?

Based on participant feedback a prototype decision aid was finalised and provided to the web design team for implementation (see supplementary material: prototype web-based decision aid). The prototype was then further developed and finalised for publication by the Department of Health and Aged Care, and subsequently made available on their website. It was noted that website links often change and these would need to be updated on a regular basis to ensure they remain current.

Discussion

In this study we aimed to apply the IPDAS guidelines to develop a web-based decision aid for adults who were considering taking action related to their hearing loss . We partly achieved that aim by developing a prototype with recommended content and format based on feedback from end users (adults with hearing loss, family members of adults with hearing loss and professionals who work with them). The final decision aid will need to be further refined with end users when it is produced in its interactive web form; such an iterative process is a feature of decision aid development.

Comparing the prototype decision aid developed in this study to the one previously published for the same population by Laplante-Lévesque, Hickson, and Worrall (2011), differences are evident related to the different uses of the two types of decision aid. In the Laplante-Lévesque, Hickson, and Worrall (2011) study, the decision aid was designed for a hearing care professional to present on paper to guide a client seeking help for hearing for the first time in a clinical appointment. In the current research the intended use was for the decision aid to be an interactive web-based tool available to a wider range of people who are at different stages of hearing help-seeking. It is likely that many have not taken any action about their hearing prior to accessing the decision aid. Thus, in the prototype developed here, there is far more content than in the previous work. New sections are included (“Learn about hearing loss and hearing tests”, “Consider what matters most to you”, “Useful links”) and there are more options in the section “Learn about the choices and funding for improving hearing”, as well as more written detail about each option.

The findings strongly suggest that hearing care professionals and service providers use the methods described in this research (survey and think-aloud) to develop decision aids appropriate to the context in which they work. Hearing intervention options vary in different parts of the world as does how they are provided, who is paying, etc. The content of the aid must match the needs of the target population and the services that are available for that population. In addition, another impetus to develop a context-specific decision aid in the way described here relates to the positive comments from participants in the think-aloud sessions about the decision aid providing reliable links and information in one place. Preminger et al. (2015) highlight that shared decision-making and offering comprehensive hearing rehabilitation (beyond hearing devices alone) promote trust in hearing healthcare.

Several avenues for future research emerged from this study. First, once the web-based version is implemented it will be important to investigate website analytics about options of interest to users, as well as to follow up on the decisions people actually make and their satisfaction with outcomes of those decisions (Laplante-Lévesque, Hickson, and Worrall 2012; Pryce et al. 2022). Second, one of the issues that arose when developing the decision aid in this research was that some options (ALDs and communication education) were unknown to most participants with hearing loss and their families. Future research could investigate if the inclusion of such lesser-known options serves to increase their uptake by consumers and/or their inclusion in services provided by hearing care professionals. Finally, future research could test the effectiveness of further individualising decision aids. In the prototype developed here the same information was provided to people who would have varying degrees of hearing loss. In contrast, users could provide their hearing test results, or they could be tested online, and then the information tailored to be directly relevant to their degree of loss (e.g., the cochlear implant option would not be provided to those with mild to moderate hearing loss). People with different configurations of hearing loss, such as single-sided deafness have different decisions to make (Underdown and Pryce 2022).

Conclusions

Following the IPDAS and with end user feedback from a survey and think-aloud process we developed a prototype of a web-based decision aid with four major sections: 1) Learn about hearing loss and hearing tests; 2) Consider what matters most to you; 3) Learn about the choices: information about options of hearing aids, ALDs, cochlear implants, communication education and medical treatment; and 4) Make your decision. The approach used here could be applied to develop decision aids that facilitate decision making around treatment options for people with hearing loss and their families in a range of clinical settings and contexts.

Authors’ contributions

L.H, B.T, and P.D made substantial contributions to the design of this study. M.N. recruited the participants, and collected and analysed the data. L.H and M.N drafted the manuscript, and all authors participated in revising the manuscript and approved the final revision.

Ethical approval

Ethical clearance for the study was obtained from The University of Queensland’s Human Research Ethics Committee (n: 2022/HE000733).

Informed consent from participants

Informed consent was obtained from all participants included in the study. This study followed appropriate informed consent procedures that was approved by The University of Queensland’s Human Research Ethics Committee.

Acknowledgments

The authors would like to thank the Australian Government, Department of Health and Aged Care, for supporting this project and thank all people with hearing loss, families, and professionals who participated in this study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Data availability

The data that support the findings of this study are available on request from the corresponding author.

Additional information

Funding

This research was funded by the Australian Government, Department of Health and Aged Care.