A Scoping Review of Communicating Neuropsychological Test Results to Patients and Family Members

An important role of healthcare providers is to deliver feedback from diagnostic findings and medical information to patients. A neuropsychological assessment (NPA) evaluates the cognitive performance of a patient and can provide insight into cognitive strengths and weaknesses (Lezak et al., 2012). In this study, explaining neuropsychological assessment results to patients and family members is defined as neuropsychological feedback. To our knowledge, this definition has been predominantly used in the literature. However, other terms have also been used (e.g., neuropsychological testing feedback). The goal of neuropsychological feedback is to help patients and family members understand the results and the implications for daily life functioning (Postal & Armstrong, 2013). Furthermore, neuropsychological feedback gives the opportunity to evaluate rehabilitation or treatment planning, provide support to patients and family members who might experience difficulties with adapting to a diagnosis, offer guidelines for decision-making, and answer questions or concerns patients may have about their NPA results (Brenner, 2003; Gorske & Smith, 2009). Giving feedback has been recommended by international clinical research groups and ethical guidelines state that a psychologist must undertake a reasonable attempt to explain the results of their assessment (Baxendale et al., 2019; Wilson et al., 2015; American Psychological Association, 2017; Baxendale & Thompson, 2010). Traditionally, neuropsychological feedback received little scientific attention and was not always part of clinical practice. Only a few studies at the end of the 80s have described the possible added value of giving neuropsychological feedback, and argued that patients who received valuable feedback were more satisfied with the NPA (Allen et al., 1986; Bennett-Levy et al., 1994). Other authors evaluated the effect of receiving personalized information in a group of 28 patients, which also included neuropsychological test results, and demonstrated that this resulted in to greater effort in therapy and more satisfaction with rehabilitation treatment (Pegg et al., 2005). Nearing the end of the 00s the number of publications increased that focused solely on the benefits of neuropsychological feedback. It was also shown that neuropsychological feedback has since become more embedded in standard practice (Westervelt et al., 2007). In a recent study in 218 patients from a neuropsychological outpatient clinic, neuropsychological feedback was shown to lead to improved quality of life, better comprehension of the medical condition, and an improved ability to cope with that condition (Rosado et al., 2018). In another study in 31 patients with ADHD or a mood disorder, providing feedback also resulted in less psychiatric and cognitive symptoms, and improved self-efficacy (Lanca et al., 2019). To our knowledge, research evaluating the benefits of neuropsychological feedback is limited. Due to the increase in publications regarding this topic in the past ten years a scoping review is warranted. It is important to gain more insight into what is known about neuropsychological feedback to improve quality of care. This scoping review aims to provide an overview (e.g., study types, methods used, results, quality of papers) about neuropsychological feedback. Furthermore, another aim is to offer recommendations for clinical practice.

The search yielded a total of 3,214 records; 2,173 remained after duplicates were removed. After screening the abstracts, 78 papers were evaluated for full text screening. A total of 34 papers were included, and five additional papers were identified through cross-referencing. The search was updated on June 11, 2020, which led to 84 extra records that were screened and three that underwent full text screening. Two papers were included from the updated search. Figure 1 shows the flowchart of the selection process. In this study, the findings from 41 papers are summarized using a narrative report. An overview of the characteristics and outcomes of these publications is described in Table 1.

This scoping review identified 41 publications on neuropsychological feedback to patients and family members in diverse settings. Several themes related to neuropsychological feedback could be identified: characteristics of neuropsychological feedback, satisfaction with neuropsychological services, patient outcomes, recommendations given in neuropsychological feedback, information provision during neuropsychological feedback, feedback frameworks and clinical recommendations. A critical evaluation of the methodological quality of the included research papers showed that most met the criteria, but not all intervention studies included a control group, not all were randomized, and not all described the sample or outcome data in detail. Most prominent was the risk of response bias in the cross-sectional survey studies as a result of low response rates.

The majority of publications recommended or used in-person feedback. Approximately thirty years ago, Pope (1992) stated that feedback was the most neglected part of psychologists’ assessments. In our review, one survey study and one mixed-methods study evaluating clinical practice showed that neuropsychological feedback was not given to all patients (Bennett-Levy et al., 1994; Foran et al., 2016). However, one of these studies was carried out over 25 years ago. When reviewing broader psychological assessment practices (e.g., also considering personality assessment), two survey studies showed that the majority of psychologists gave in-person feedback, although this was not always a routine part of their assessment (Smith et al., 2007; Curry & Hanson, 2010). Based on these results, it seems that psychologists currently give feedback in psychological diagnostic procedure more often than 25 years ago. However, it is still not a clinical routine, and the content of neuropsychological feedback depends on the clinical context. Nonetheless, the potential clinical benefits of psychological feedback have been demonstrated, such as improved self-esteem, hopefulness, and reduced symptoms (Ackerman et al., 2000; Allen et al., 2003; Finn & Tonsager, 1997). Giving feedback also led to a better therapeutic alliance in psychotherapy (Ackerman et al., 2000; Hilsenroth et al., 2004). Furthermore, a meta-analysis showed that only when psychological assessment procedures were combined with personalized and collaborative feedback did clinically meaningful effects on treatment emerge (Poston & Hanson, 2010) In another study it was shown that psychological test validity was indistinguishable from medical tests validity, and that assessment feedback was related to increased patient well-being (Meyer et al., 2001; Finn & Tonsager, 1992; Newman & Greenway, 1997). Although research is lacking on the therapeutic value of collaborative neuropsychological feedback, it is highly likely that it has similar effects as in other psychological assessment fields. However, when looking at multidisciplinary practices, the diagnostic disclosure (based on all diagnostic assessments) is often given only by the medical specialist. Offering an additional consultation with a neuropsychologist to discuss NPA findings in multidisciplinary practices could be helpful in patients and offers the opportunity to improve information retention and answer remaining questions. Furthermore, it offers the opportunity to provide support and guidance due to the emotional impact of the diagnosis.

Consumer experience and satisfaction with NPA were the most reported outcomes in the current scoping review. Generally, positive experiences and high satisfaction with neuropsychological procedures were reported. Gaining more insight into consumer experiences and satisfaction is relevant, as it may lead to improvement of the quality of service and patient outcomes, such as reduced patient anxiety due to good communication (van Osch et al., 2017). However, the validity of satisfaction in treatment outcomes has been criticized as a result of not taking psychological factors, communication, and patient expectations into account (Verbeek, 2004; Hudak et al., 2003). In terms of an NPA, patient satisfaction was related to receiving feedback that was evaluated as valuable (Bennett-Levy et al., 1994). This is in line with the findings of Smith et al. (2007), who showed that patients appreciated that psychological feedback helped understand their problems, which could result in positive changes. However, not understanding or remembering neuropsychological feedback might negatively influence satisfaction. Therefore, Brenner (2003) has developed a framework that psychologists can use to increase the beneficial value of and satisfaction with psychological assessments: elimination of jargon, focus on referral questions, individualized assessment reports, emphasis on patient strengths, and including concrete recommendations.

The current review also showed that information retention of neuropsychological feedback was low. A few quantitative studies reported low percentages of information retention, especially recommendations were difficult to remember (Meth et al., 2016). This is in line with earlier studies that showed that the retention of medical information was generally low (Kessels, 2003). This is alarming, as adherence to treatment recommendations is related to understanding, recall, and satisfaction with the consultation (Ley, 1979). Understanding health information, also defined as health literacy, is important because low health literacy is the strongest predictor of poor health outcomes, such as more hospital admissions, higher mortality rates, and inadequate medication adherence (Berkman et al., 2011), as well as poor disease or care management (Graham & Brookey, 2008). Furthermore, patients with a low health literacy are less likely to take preventive measures or adopt a healthy lifestyle (Graham & Brookey, 2008). Remembering and understanding neuropsychological feedback may be even more difficult in patients who have a cognitive impairment. Retention might also be hampered by emotional arousal or valence related to receiving (bad news) or not receiving (good news) a diagnosis (Kensinger, 2009). On the one hand, receiving a ‘bad news’ diagnosis has profound emotional effect on both the patient and family members, such as feelings of stress and anxiety. It is very likely that this leads to lower recall of information. On the other hand, feeling relieved if the feared diagnosis is not confirmed might also negatively influence information retention. A few studies have explored the mode of information as a suitable target for communication aids. The current scoping review showed that offering supplemental written information might be helpful, but no studies have been conducted on whether visual aids could improve information retention in neuropsychological feedback. Some promising findings were seen in other fields, such as improved recall when using three-dimensional MRI models of the tumor and brain compared to two-dimensional models (Sezer et al., 2020). Furthermore, a systematic review showed better recall in multiple studies when visual aids were used (Watson & McKinstry, 2009). It is essential that neuropsychological feedback can be remembered so that it can lead to improved treatment outcomes. This review also showed that Motivational Interviewing principles might improve information retention as suggested by Postal and Armstrong (2013). In addition, motivational interviewing may also improve treatment adherence in rehabilitation, psychotherapy, and medication (Palacio et al., 2016; Tolchin et al., 2019; Suarez, 2011). Furthermore, the use of these techniques has been shown to reduce addictive behaviors (e.g., binge drinking, alcohol consumption) (Frost et al., 2018). Other applications of motivational interviewing have also been described, such as dealing with patient resistance (Gorske, 2007). By using these principles patients might understand the information and be more likely to change their behavior.

A strength of the current study is its use of the scoping review methodology to gain insight into a broad spectrum of literature on providing neuropsychological feedback. It synthesizes evidence on an emerging topic while using a systematic process that is both replicable, transparent and rigorous. Furthermore, the review has been carried out by experts in the field of clinical neuropsychology with the involvement of an expert librarian. Most scoping reviews do not include a critical appraisal of the quality of the included studies. However, we have included this to not only describe the scope of the research questions but also to give an impression of the validity.

Some limitations must be mentioned as well. One limitation is that reviews are time consuming, and new publications might have emerged since the search. However, we have recently updated the search, which resulted in the inclusion of two full papers. A second limitation is that although we have tried to discuss the most important findings, due to the limited space, some details might have not been described. Furthermore, the variation between the document types and range of data collection, methodology and analysis techniques made it sometimes difficult to present the results in a compact and integrated way.

Finally, future research should include more studies adopting a randomized controlled trial to gain more insight into the benefits of neuropsychological feedback. It would also be of interest to evaluate neuropsychological feedback in specific settings with a multidisciplinary nature, such as memory clinics. Furthermore, more attention is needed to train psychologists in providing neuropsychological feedback. It would be helpful if more attention could be given about this topic during graduate and postgraduate education courses of psychologists. The clinical recommendations offered in this paper could be used. Finally, more research is also needed focusing on how neuropsychological feedback could be best communicated to optimize information retention and treatment adherence. More research is needed to identify predictors of improved information retention (e.g., having multiple sessions, involving a family member, use of motivational interviewing principles). Furthermore, more studies are needed on how to best offer supplemental verbal or visual information to improve comprehension and retention of neuropsychological feedback.

Overall, the current scoping review shows that neuropsychological feedback is a vital and therapeutic component that may improve patients’ satisfaction with neuropsychological services. However, the content, frequency and type of feedback vary greatly across professionals. Furthermore, it should be stressed that information retention and adherence to recommendations is often poor, despite the provision of neuropsychological feedback. It is important that clinicians are aware of facilitators and barriers in offering neuropsychological feedback. In Table 3 we provide an overview of clinical recommendations is presented that can be used to improve retention, adherence, and the clinician-patient relationship through motivational interviewing principles. Although using communication aids seems promising, more research is warranted.