https://orcid.org/0000-0003-0553-6165
ABSTRACT
Objective
People tend to live with obsessive-compulsive disorder (OCD) for many years before receiving evidence-based treatment. This delay is partly due to a lack of access to information about which healthcare providers offer evidence-based treatment for OCD. This information was not easily accessible online for people in Australia.
Methods
In this study, we describe how an online directory of clinicians was developed and evaluated. We report on a needs analysis and survey of treatment-seeking histories among consumers and carers impacted by OCD. We describe the key features of the directory developed, and present survey feedback on its usability and utility.
Results
The results validated the need for a directory specific to clinicians who offer evidence-based treatment for OCD, and that it meets essential usability standards. Areas for improvement and further developments were identified.
Conclusion
This directory contributes to broader efforts invested to improve the treatment-seeking process for people living with OCD in Australia.
KEY POINTS
What is already known about this topic:
Globally, barriers to access delay appropriate treatment for OCD.
One barrier is not knowing who offers evidence-based treatment specific to OCD.
In Australia, there is no central source that provides such information.
The delays in treatment reported in Australia are comparable to other countries.
We developed a directory of clinicians with a special interest in treating OCD.
Consumer feedback suggests the directory will assist the treatment-seeking process.
In any given year, approximately one in 50 people in Australia live with obsessive-compulsive disorder (OCD), according to the most recent prevalence data (Slade et al., Citation2009). Symptoms of OCD tend to cause substantive interference in day-to-day life. Indeed, data indicates that Australians who meet diagnostic criteria for OCD are unable to perform their normal duties, at home or work, for an average of 6.3 days per month (Slade et al., Citation2009). Evidence-based treatment guidelines for OCD have been clearly specified (American Psychiatric Association Citation2007; Citation2013; Australian Psychological Society, Citation2018; Katzman et al., Citation2014; National Institute for Health and Care Excellence, Citation2005; Skapinakis et al., Citation2016). These include cognitive-behavioural therapy, typically with exposure and response prevention, as a first-line psychological intervention, and selective-serotonin reuptake inhibitors as a first-line pharmacological intervention. However, people tend to live with OCD for years before they begin effective treatment.
Global research suggests that it takes approximately seven years for people to access effective pharmacological interventions (Dell’osso et al., Citation2019). Similarly, based on data from a recent meta-analysis of studies involving cognitive behaviour therapy with exposure and response prevention for OCD (Reid et al., Citation2021), we calculated the average weighted duration of illness was 15 years prior to enrolling in the cognitive behaviour therapy trial. Research suggests that if people accessed adequate evidence-based treatment earlier, they might find treatment more effective, experience less psychosocial burden, and reduce the risk of comorbid disorders (Fineberg et al., Citation2019).
Barriers to seeking and receiving treatment
There are several reasons people live with OCD for so long before receiving adequate treatment. Regarding client factors, a literature review of studies investigating barriers to treatment-seeking reported that shame, a lack of knowledge about where to get help, and logistical constraints were consistent themes (García-Soriano et al., Citation2014). The authors noted that more education is needed to combat frequent underdiagnosis, and access to treatment should be improved. An Australian survey published the same year found similar themes (Gentle et al., Citation2014).
When people do overcome these barriers and seek treatment, they often face barriers in receiving appropriate assessment and treatment. There is a plausible risk of misdiagnosis by professionals, sometimes with significant adverse consequences (Stahnke, Citation2021). Such misdiagnoses can lead to missed opportunities to provide appropriate treatment during developmentally important years (Fineberg et al., Citation2019), prescriptions for medications that are known to exacerbate OCD symptoms (Abramovitch et al., Citation2013; Leung & Palmer, Citation2016), and inappropriate reports to authorities that may lead to legal complications (Bruce et al., Citation2018).
Following an accurate diagnosis, referrers or clients must then find a clinician with who offers evidence-based treatment, such as cognitive behaviour therapy with exposure and response prevention. Not all clinicians have an interest and competence in evidence-based treatments for OCD. This is an additional barrier to receiving effective treatment. Therapists are often hesitant to facilitate exposure-based exercises essential to exposure and response prevention (Jelinek et al., Citation2022; Moses et al., Citation2022; Pittig et al., Citation2019). There is also consensus that treatment for OCD is a specialised area (Pittenger et al., Citation2021; Sookman et al., Citation2021). Many postgraduate clinical psychology training programs in Australia however, tend to overlook disorder-specific cognitive behaviour therapy competencies, such as those required to address OCD (Impala et al., Citation2019). Anecdotally, the authors’ experience is that many clients often see several health professionals over several years before they receive an adequate course of an evidence-based treatment for OCD.
These help-seeking journeys could be shortened if people in Australia had access to information about mental health professionals who offer evidence-based treatments which specifically address OCD. One solution is to develop an online directory of such professionals. Similar approaches have been used for other specialised treatment areas in Australia, such as eating disorders (https://butterfly.org.au), borderline personality disorder (https://www.uow.edu.au/project-air/find-a-service/), and trauma conditions (https://www.traumasupport.com.au). Such a directory might address client barriers regarding a lack of knowledge about where to get help and assist both clients and referrers in identifying appropriate treatment providers.
This study reports on the development and evaluation of an online directory of healthcare professionals in Australia who offer evidence-based treatments for OCD. Guided by participatory design principles (Schuler & Namioka, Citation1993), our first aim was to test the need for such a directory among consumers, by examining the treatment-seeking histories of respondents. We then describe the development of the directory, evaluate its usability and acceptability among consumers, and identify areas for improvement.
Methods
Website development
We first defined the core requirements for a clinician directory that could provide access to information about healthcare providers who offer evidence-based treatments for OCD in Australia. These are outlined in , along with proposed acceptance criteria. We then conducted a series of searches on Google.com.au using combinations of terms such as “OCD”, “therapists”, “directory”, “psychologists”, and “psychiatrists” to identify whether a directory exists which already meets these requirements.
Table 1. Requirements for clinician directory.
Our online searches yielded seven quality online directories, listed in . All directories allowed consumers to search for providers who treat OCD, either as a search filter or a dedicated directory. However, most were limited to clinicians that belonged to a specific profession, a professional association (at a substantive cost), or were trained by a commercial organisation outside of Australia. Further, several directories made little effort to validate whether the clinicians knew which evidence-based treatments are appropriate for OCD, or had undertaken to offer them to clients.
Table 2. Existing clinician directories.
As none of the directories met all three criteria, we developed a dedicated online directory to address this need. The directory was designed to allow listings from any healthcare professional registered with the Australian Health Practitioner Regulation Agency (AHPRA) who works in mental health, regardless of their profession or association membership. We did not impose a listing fee for the directory and invited clinicians in private-practice Facebook groups and our personal networks to register and encouraged them to invite others.
To enhance the quality of the listings and provide greater value than general search engine results, the directory was designed with a quasi-peer-endorsement process. This process involved requiring clinicians use a unique invitation code from a colleague already in the directory to submit a listing application. In their application, clinicians are also asked to describe their typical treatment process for OCD. Each listing is manually reviewed by a clinician with expertise in treating OCD to ensure the description reflects evidence-based practice, prior to being approved and publicly listed in the directory. Applications from psychologists must include a brief description of cognitive behavioural therapy with exposure and response prevention. Similarly, applications from psychiatrists must include appropriate assessment and first-line use of selective serotonin reuptake inhibitors. This manual review also includes a check that the services offered by the clinician are appropriate to their profession and that their AHPRA registration is valid at submission. The site has been designed so that neither the endorsing clinician’s name nor the applicant’s answers regarding the treatment process are made available to the public.
Consumer feedback
Participants
Participants who provided feedback included consumers, who identified as either living with a diagnosis of OCD, or caring for someone with OCD. To be included, participants were required to be 18 years or older and residing in Australia. Participants were recruited via study advertisements distributed on social media channels (on Twitter and an Australian OCD support group on Facebook) and by clinicians within the authors’ professional networks. A total of 31 participants were enrolled in this study. Of these, 20 reported that they have a diagnosis of OCD (Mage = 35.65, SD = 12.39) and 11 reported that they are a carer for someone diagnosed with OCD (Mage = 46.27, SD = 15.13).
Materials
Consumer experience survey
Participants were asked to specify their age, type of consumer (patient/carer), treatments received to date, and the number of years since symptom onset, since diagnosis, and since treatment began, via an online survey. Participants were also asked “Have any of the following concerns influenced you to delay seeking treatment or avoid getting treatment for OCD altogether?” and were presented with 17 potential barriers to access. This list was adapted for an Australian context from a previous study investigating barriers to OCD treatment in the United States (Marques et al., Citation2010). Participants were also invited to specify any other barriers not listed.
Usability testing task
Qualitative feedback was gathered using a procedure adapted from standard usability testing processes (18F, Citation2019; Hertzum, Citation2020). Participants were instructed: “Imagine you’ve had thoughts and urges that have been upsetting… Imagine that you have only recently been told that this is obsessive-compulsive disorder. You decide you want to find treatment. Please follow these two steps: (1) Using https://ocd.org.au, search for a mental health professional that could help; and (2) View their profile”.. Participants were invited to provide written feedback including their first impressions and experience searching the directory.
User Experience Questionnaire (UEQ)
The UEQ (Laugwitz et al., Citation2008) is a standardised measure of cognitive and emotional experiences when using software-based products or websites, with existing performance benchmarks derived by categorising scores from a large data set of previous user experience valuations (Schrepp et al., Citation2017). Participants were asked to rate their impressions on 7-point scales (scored −3 to 3) for 26 dichotomous items (e.g., “clear/confusing”, “inefficient/efficient”, “obstructive/supportive”). The items reflected six subscales that assessed both pragmatic (perspicuity, efficiency, dependability) and hedonic (stimulation, novelty, attractiveness) aspects of experience (α’s ranged from .91 to .94).
Procedure
Ethical approval for this study was obtained from the Human Ethics Research Committee at University of New South Wales (HC220039). After providing informed consent, participants completed the online Consumer Experience Survey at a time and place of their choice. Participants were then presented with the homepage of the online clinician directory and asked to provide their initial impressions using an open-ended written question. Participants were then asked to complete the usability testing task, UEQ, and provide any final qualitative feedback.
Data analysis
Quantitative data were analysed in R (R Core Team, Citation2019) to calculate descriptive statistics. Answers to the UEQ were scored and compared to the most recent available benchmark data using a tool provided by one of the scale authors (Schrepp, Citationn.d.). Qualitative data were processed using an inductive and latent theme analysis, guided by principles described in Braun and Clarke (Citation2006). The first author coded answers to open-ended questions (initial impressions and final feedback), collapsed qualitative feedback from the two questions, extracted themes, and then checked these against the original data. Due to the brevity of the texts, this process was performed in Microsoft Excel (Robinson, Citation2022). The senior author reviewed the results and differences were resolved by discussion.
Results
Treatment journeys and barriers
A total of 31 participants began the survey and collectively provided data that indicated long durations of untreated illnesses and multiple barriers to treatment. The average treatment journey for participants who gave sufficient data is reported in . Two participants indicated that they received a diagnosis after starting treatment, which may reflect initial misdiagnosis and initially inappropriate treatment. Of the 29 participants who reported receiving a treatment, the majority reported accessing multiple modalities of care, the most common was medication (n = 25, 86%), followed by self-help (n = 17, 59%), other talk therapy (n = 16, 55%), cognitive behaviour therapy with exposure and response prevention (n = 16, 55%) and cognitive behaviour therapy without exposure and response prevention (n = 13, 45%). Answers to open-ended questions regarding pathways to receiving treatment indicated that most participants found treatment via primary care (n = 10, 45%), followed by their own research (n = 8, 36%), and then secondary/tertiary care (n = 4, 18%). Two participants reported only receiving help for their OCD following suicide interventions. The barriers to seeking or receiving treatment are given in , the most common of which is a lack of clarity of where to get help.
Table 3. Clinical history and treatment journeys in years.
Table 4. Barriers to seeking or receiving treatment.
Evaluation of directory
Mean user experience scores, gathered after participants reviewed the website, were compared to benchmarks given in the associated data analysis tool (Schrepp, Citationn.d.) and described in the methods. These are presented in . Scores for all three pragmatic areas of user experience were above average, compared to the benchmarks. Participants rated the attractiveness and hedonic aspects of their experience as below average or bad, compared to updated benchmarks embedded in the data analysis tool. Nineteen participants provided qualitative feedback, summarised in , which validated the need for the directory and highlighted specific areas to improve visual and written communication.
Table 5. Benchmarked user experience scores.
Table 6. Themes from qualitative feedback.
Discussion
This study aimed to report on the needs analysis, development, and evaluation of an online directory of healthcare professionals who offer evidence-based treatments specific to OCD. Participants reported treatment histories and barriers that validate the need for this directory. Usability data compared favourably to benchmarks in themes that affect access to information. Qualitative feedback highlighted areas for improvement, some of which have already been addressed, consistent with an iterative development process.
The treatment journeys reported by participants highlighted the need to improve pathways to adequate care in Australia. Participants reported an average of 9 years (median: 5) between symptom onset and access to treatment. Data were positively skewed, owing to floor effects. However, these estimates are similar to results from a recent review of international literature (Dell’osso et al., Citation2019). Unlike studies specifically investigating duration of untreated illness, we did not evaluate the adequacy of the treatments received. As such, the actual duration to adequate evidence-based treatment may in fact be higher.
Eighty-six percent of participants reported receiving medication and only 55% of participants reported receiving cognitive behaviour therapy with exposure and response prevention. Although these figures may be slightly higher than international averages (Brakoulias et al., Citation2019), our sample may have had a higher proportion of well-informed participants given its recruitment sources. These data suggest that many participants have not received the first-line psychological treatment recommended for OCD. This may be addressed in part through access to a directory that lists providers who specifically offer this treatment.
Overall, the reported barriers to seeking or receiving treatment highlighted a systemic need to increase access to information and reduce stigma, which is consistent with international literature (García-Soriano et al., Citation2014). It is notable that one of the most common barriers was “not knowing who to see or where to go”. Together, these findings validate the need that this directory is designed to address. However, much larger advocacy work and education within the public and health domains is also required.
The user experience ratings for pragmatic aspects of the directory were above average, compared to software and website benchmarks (Schrepp, Citationn.d.; Schrepp et al., Citation2017). Users were able to search the directory and access information with little effort. However, ratings were below average for attractiveness and stimulation, and bad for novelty. Two themes from the qualitative data also highlighted that users perceived the site as clinical. Although plain and conventional aesthetics may be adequate, or even suitable given the context, refinements were clearly required. In response, we have improved visual aspects and reduced jargon. This is an area requiring further improvement as we consider the advocacy and education work also needed in Australia.
Limitations and future directions
Although data describing participants’ treatment journeys are consistent with international research, it is acknowledged that the sample is relatively small. A larger study that involves stratified random sampling and evaluations of the interventions received would provide a stronger population view of how people experience treatment-seeking for OCD. In addition, the sample size prevented us from analysing whether demographic factors or treatment-seeking histories influenced their evaluations of the directory. Fewer participants provided data regarding their user experience, although benchmarking data indicates that almost half of all user experience samples are approximately this size (Schrepp et al., Citation2017). Although the sample was also adequate to identify problems from qualitative data (Hertzum, Citation2020), further insights may have been gained from in-person testing.
More broadly, this study and the online directory emphasise appropriate medication and exposure and response prevention as first-line treatments of choice for OCD. However, evidence-based treatment also requires that clinicians consider a person’s characteristics, culture, preferences, and the their own expertise in delivering treatment (American Psychological Association, Citation2006). There are other therapeutic approaches that do not necessarily include exposure and response prevention, such as cognitive therapy (McKay et al., Citation2015; Öst et al., Citation2015), acceptance and commitment therapy (Bluett et al., Citation2014; Philip & Cherian, Citation2021) and inference-based cognitive behaviour therapy (Aardema et al., Citation2022; Julien et al., Citation2016). These approaches were not captured in our study data and are not yet acknowledged in the online directory, but may be more appropriate for clients who do not find medication or exposure and response prevention acceptable. Further research exploring the broader scope of evidence-based treatment for OCD, with clinicians in Australia, may help to inform opportunities for better skill development and dissemination.
This study validates that consumers seeking help for OCD need access to information about clinicians who can provide appropriate evidence-based treatment in Australia. It also illustrates that co-design with consumers and clinicians is needed to improve usability and acceptability. Importantly, clinicians do not need to develop a niche practice or work in a specialised public health service to competently treat OCD. All mental health care professionals registered in Australia can develop skills required to effectively treat OCD through ongoing professional development activities, including keeping up to date with the literature on evidence-based treatment, engaging in professional training workshops, and seeking supervision from practitioners with specialised practice. Additional initiatives are required to support ongoing improvements to workforce capacity in delivering evidence-based treatment within health and public domains. Together, we hope that this directory and future initiatives improve the treatment journey for people living with OCD in Australia.
Disclosure statement
All authors are listed on the online directory.
Data availability statement
Data are available from the authors upon reasonable request.
Additional information
Funding
References
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