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Evidence review for patient information
Evidence review B
NICE Guideline, No. 155
National Guideline Centre (UK).
1. Patient information
1.1. What information should be provided to people with tinnitus, including self-management strategies?
1.2. Introduction
Information and advice on the causes of tinnitus and the range of interventions to successfully manage tinnitus, including self-management, may not be easy to access in an appropriate format for all people with tinnitus and their carers. On the whole, the general public has poor knowledge of tinnitus, and in particular people with tinnitus and their families and carers have a need for more information to help them cope with the condition.
Those with tinnitus are sometimes given inaccurate or unhelpful information, which can have a negative impact on their ability to live well with tinnitus. Those who seek support also may not be given the information they need in order to make informed choices about the possible interventions appropriate for them or the information might not be tailored to their specific needs. Early provision of relevant information may help the person manage tinnitus better and prevent tinnitus from being intractable and/or distressing.
Provision of information and support is inconsistent throughout the UK. Healthcare professionals may provide information and advice but this is not universally available or standardised.
This review was carried out to inform recommendations about the information and advice needs of people with tinnitus and their families and carers. This information can help them adjust to having tinnitus and learn to manage it either through self-management or accessing further interventions.
Appropriate and relevant information is an integral part of support and a review on support for people with tinnitus (sometimes known as counselling) can be found in evidence review A.
1.3. Characteristics table
For full details see the review protocol in appendix A.
Table 1
Characteristics of review question.
1.4. Qualitative evidence
1.4.1. Included studies
Three qualitative studies were included in the review; 6, 9, 13 this is summarised in Table 2 below. Key findings from this study are summarised in Section 1.4.2 below. See also the study selection flow chart in appendix C, study evidence tables in appendix D, and excluded studies lists in appendix G.
1.4.2. Excluded studies
See the excluded studies list in appendix I.
1.4.3. Summary of qualitative studies included in the evidence review
Table 2
Summary of studies included in the review.
See appendix D for full evidence tables.
1.4.4. Qualitative evidence synthesis
Table 3
Review findings.
1.4.4.1. Narrative summary of review findings
Review finding 1: Information should be provided to improve understanding of tinnitus
Participants aimed to develop an understanding of their tinnitus and searched for answers about their tinnitus.
Explanation of quality assessment: there were moderate concerns about methodological limitations as the interview format was not described and the nature of the relationship between the interviewer and participants was also not described; concerns about coherence were not applicable as one study informed this review finding; there were moderate concerns about relevance as aim of the study was not to explore what information should be provided to people with tinnitus; there were minor concerns about adequacy – this was based on the overall assessment of the richness of the data and quantity of data. Whilst only one study contributed to this finding, this assessment indicated that there was sufficient richness in the data to inform this relatively descriptive finding.
Review finding 2: Information about what causes changes in tinnitus needed
Participants wanted information about changes in tinnitus and if anything can be done to improve the noise - “How does it fluctuate, the noise in my ear?…we look eating habits, drinking habits, working habits, but it’s the same all the time…”. Additionally, when participants were asked about the content of a tinnitus brochure, they responded that they wanted information about how tinnitus symptoms can be prevented.
Explanation of quality assessment: there were moderate concerns about methodological limitations as the interview format was not described and the nature of the relationship between the interviewer and participants was also not described; there were minor concerns about coherence; there were moderate concerns about relevance as the aim of the study was not to explore what information should be provided to people with tinnitus; there were moderate concerns about adequacy – this was based on the overall assessment of the richness of the data and quantity of data. This assessment indicated that was insufficient information to explore the finding further (the review finding was supported by one quote per study), it was however noted that the finding is relatively descriptive.
Review finding 3: Information should be provided about management options for tinnitus
Participants wanted information about the impact of different tinnitus management options (e.g. “talking therapies, sound therapy, group support”), on tinnitus symptoms and the process of accessing management options. One participant in the study shared “…I made an appointment to go and see (a private ENT consultant), I was just thinking, there must be something they can do…”. Another participant shared that they visited a doctor and was told “…there is a box they can fit you with…to make it go away” and the participant desired to find out about techniques to help their tinnitus.
Explanation of quality assessment: there were moderate concerns about methodological limitations due to limited details about sampling methods and the nature of the relationship between the interviewer and participants was also not described; there were minor concerns about coherence; there were moderate concerns about relevance; there were moderate concerns about adequacy – this was based on the overall assessment of the richness of the data and quantity of data. This assessment indicated that was insufficient information to explore the finding further (one study did not provide supportive quotes), it was however noted that the finding is relatively descriptive.
Review finding 4: Information should be tailored to the person’s needs (e.g. visual with verbal explanations)
Participant found that a diagram helped with understanding their tinnitus and valued the explanation given to them, providing reassurance. One participant shared that “She gave me a good diagram of the ear and explained exactly what happened to me…because she helped me understand it, it probably reduced the annoyance”.
Explanation of quality assessment: there were moderate concerns about methodological limitations as the interview format was not described and the nature of the relationship between the interviewer and participants was also not described; concerns about coherence were not applicable as one study informed this review finding; there were moderate concerns about relevance as the aim of the study was not to explore what information should be provided to people with tinnitus; there were moderate concerns about adequacy – this was based on the overall assessment of the richness of the data and quantity of data. This assessment indicated that was insufficient information to explore the finding further (the review finding was supported by one quote), it was however noted that the finding is relatively descriptive.
Table 4
Summary of evidence.
1.5. Economic evidence
1.5.1. Included studies
The committee agreed that health economic studies would not be relevant to this review question, and so health economic evidence relating to this question was not sought.
1.6. Evidence statements
1.6.1. Qualitative evidence statements
- Review finding 1: Information should be provided to improve understanding of tinnitusLow quality evidence from one study (n=8) informed this review finding. There were concerns about methodological limitations and relevance. The evidence suggested that information should be provided to people with tinnitus to improve their understanding of tinnitus and consequently impact how their tinnitus impacts their daily lives
- Review finding 2: Information should be provided about what causes changes in tinnitusLow quality evidence from two studies (n=15) informed this review finding. There were concerns about methodological limitation, relevance and adequacy. The evidence suggested that people with tinnitus would like information about what causes changes in their tinnitus, in particular if any lifestyle habits can improve or worsen their tinnitus.
- Review finding 3: Information should be provided about management options for tinnitusLow quality evidence from two studies (n=49) informed this review finding. There were concerns about methodological limitations and relevance. The evidence suggested that people with tinnitus want to be provided with information about the various management options available to them and how they can be accessed. Additionally, people with tinnitus would like to be provided with information about the impact that different management options can have on their symptoms.
- Review finding 4: Information should be tailored to the person’s needs (e.g. visual with verbal explanations)Low quality evidence from one study (n=8) informed this review finding. There were concerns about methodological limitations, relevance and adequacy. The evidence suggested that the use of visual and verbal explanations by healthcare professional when providing information to people with tinnitus can improve tinnitus outcomes and provide reassurance.
1.6.2. Health economic evidence statements
No relevant economic evaluations were identified.
1.7. The committee’s discussion of the evidence
1.7.1. Interpreting the evidence
1.7.1.1. The quality of the evidence
The review had 4 main findings:
- Information should be provided to improve understanding of tinnitus
- Information should be provided about what causes changes in tinnitus
- Information should be provided about management options for tinnitus
- Information should be tailored to the person’s needs (e.g. visual with verbal explanations)
Across the review findings there were moderate concerns about methodological limitations due to a lack of information about: the nature of the relationship between the interviewers and participants, the format of the interviews and the sampling methods used.
As a result of the low number of qualitative studies, coherence was not applicable for two of the review findings. Two review findings were informed by two studies and there were minor concerns about coherence.
For all of the review findings there were moderate concerns about relevance as the aims of the studies did not directly match the aim of this evidence review. The aim of one study which informed the third review finding was more relevant to this evidence review, compared to the other two included studies.
The quantity of the supporting quotes and richness of the data (in terms of the amount of detail provided within studies to gain an understanding of people’s experiences) varied across the review findings, consequently the concerns for adequacy ranged from minor to moderate.
The overall assessments of confidence for the review findings were low.
1.7.1.2. Findings identified in the evidence synthesis
This review included three qualitative studies which found that information is important to people experiencing tinnitus. There is limited information about “what” information provision should consist of with one study reporting that it should include information about what could improve or worsen tinnitus. Lay representatives on the committee shared that many people find that tinnitus fluctuates over time. There is the understanding that factors such as stress, anxiety and a cold can cause tinnitus to become more noticeable (this is usually temporary). Furthermore, two qualitative studies reported that information should be provided about the management options available for people with tinnitus in order to aid decision making. One of these studies also reported that people wanted information about how the management options can be accessed.
The committee made a consensus recommendation about the importance of reassurance for people. They considered that it was crucial that in discussions with people with tinnitus, the healthcare professional should try to explore their experience of tinnitus and reassure people who have no symptoms requiring urgent onward referral regarding outlook. It should be discussed that tinnitus is commonly associated with hearing loss but it is not commonly associated with other underying physical problems. The committee noted that damage can be caused not just by the provision of unhelpful information but also by the absence of information. People may be frightened or anxious and should not be left to draw their own conclusions about the cause and future severity of their tinnitus.
The committee made a recommendation about the factors that should be discussed when giving information about tinnitus to people with tinnitus, family members or carers, based on clinical experiences, feedback from the lay representatives and the results of the qualitative review. The committee hope that providing a list of topics to include as part of the recommendation would encourage healthcare professionals to have a more focused and informative approach when providing information. The committee made this a strong “offer” recommendation because they believe that providing information is an essential part of patient care.
The committee acknowledged that there were no findings about the timing of the provision of information but currently the provision of information is often inadequate across the clinical pathway. The committee made a consensus recommendation that people experiencing tinnitus should receive information about tinnitus at all stages of care. The provision of information particulary at the person’s first point of contact with a healthcare setting, e.g. general practice, is crucial. Extreme distress or catastrophic thinking at the onset of tinnitus can influence patient outcomes and the potential impact of this can be minimised by providing people with tinnitus helpful information as early as possible.
The committee noted that one of the findings for this review indicated that ‘information should be tailored to the person’s needs (e.g. visual with verbal explanations)’. The committee collectively agreed that using a tailored approach to present information in a variety of formats (e.g. verbal consultation and written information) would be good practice. The tailoring of information should be based on individual needs, i.e. children should receive child-friendly explanations and resources. Parents, guardians or carers should also be provided with tailored information. Other considerations should include people who suffer from hearing loss or those with cognitive and visual impairments.
In summary, three qualitative studies were included in this evidence review which provided some insight into the views that people with tinnitus have in regards to the provision of information. The recommendations made by the committee were mainly consensus-based. Strong recommendations were made as patient information should be an essential part of the patient experience. The committee believed that reassuring people about tinnitus and providing accessible information at first point of contact with a healthcare professional can improve patient outcomes.
1.7.2. Cost effectiveness and resource use
Cost effectiveness evidence was not sought as this was a qualitative review. The recommendations provide guidance regarding the content of information and support required for people with tinnitus. This in line with the general principles of provision of information already established in the existing NICE Patient experience guideline (CG138). The recommendations were not considered likely to have a substantial resource impact over and above CG138.
1.7.3. Other factors the committee took into account
Current practice is variable and this will be a change in practice for some settings. In some areas people with tinnitus are not offered any information. The committee noted that many settings will need to assess and expand the information they give. Information given has the potential to reassure or cause the person further distress and so it is very important to get the tone and message right from the outset. The committee also hope that the recommendations will lead to more consideration about the impact of information particularly at initial consultations in general practice.
Lay representatives felt that people with tinnitus need information at every stage of their interaction with health professionals. The information given needs to be accessible to each individual and appropriate for their needs. Some people will welcome a lot of information and be comfortable in using technology to access that information. Others will want less information or may need sources which do not include using technology. It was felt that giving everyone a hastily printed ‘information sheet’ is not acceptable. The information given should enable people with tinnitus to make informed decisions and have input into their management plan. There should be opportunity for discussion after the individual has had chance to consider the information given.
Both lay representatives and clinicians on the committee felt that some health professionals did not know where to find the most appropriate information for people with tinnitus. The committee noted that further useful information and support can be found via local and national support groups and charities and it would be helpful if healthcare professionals could point people towards any useful resources.
The committee noted that whilst sharing information about what can affect tinnitus, mention may be made about preventative measures (safe listening practices) e.g. the use of ear plugs in noisy environments, as excessive noise can be associated with exacerbation or initial onset of tinnitus. When sharing information on the impact of tinnitus, the committee agreed that sleep can be discussed. The committee noted that it is fairly well-established sleep deprivation has an effect on how one copes with tinnitus, as well as being a co-morbidity. In addition, the committee acknowledged that stress can have an impact on tinnitus and make it worse. The committee agreed that information should be provided about stress also.
The committee discussed that British Sign Language (BSL) users need access to specialist care and support that recognised the unique language and culture of the Deaf community. A qualified BSL interpreter and/or access to information in BSL should be available in supporting a Deaf individual with tinnitus.
References
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- Andersson G, Edvinsson E. Mixed feelings about living with tinnitus: a qualitative study. Audiological Medicine. 2008; 6(1):48–54
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- Fackrell K, Hoare DJ, Smith S, McCormack A, Hall DA. An evaluation of the content and quality of tinnitus information on websites preferred by General Practitioners. BMC Medical Informatics and Decision Making. 2012; 12:70 [PMC free article: PMC3439701] [PubMed: 22788751]
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- Greenwell K, Sereda M, Coulson N, El Refaie A, Hoare DJ. A systematic review of techniques and effects of self-help interventions for tinnitus: Application of taxonomies from health psychology. International Journal of Audiology. 2016; 55(Suppl. 3):S79–S89 [PubMed: 27146036]
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- Loumidis KS, Hallam RS, Cadge B. The effect of written reassuring information on out-patients complaining of tinnitus. British Journal of Audiology. 1991; 25(2):105–109 [PubMed: 2054540]
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- Manchaiah V, Dockens AL, Flagge A, Bellon-Horn M, Azios JH, Kelly-Campbell RJ et al. Quality and readability of English-language internet information for tinnitus. Journal of the American Academy of Audiology. 2019; 30(1):31–40 [PubMed: 30461391]
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- Ming J, Kelly-Campbell RJ. Evaluation and revision of a tinnitus brochure. Speech, language and hearing. 2018; 21(1):22–29
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- National Institute for Health and Care Excellence. Developing NICE guidelines: the manual [Updated October 2018] London. National Institute for Health and Care Excellence, 2014. Available from: https://www
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- Nyenhuis N, Zastrutzki S, Weise C, Jäger B, Kröner-Herwig B. The efficacy of minimal contact interventions for acute tinnitus: a randomised controlled study. Cognitive Behaviour Therapy. 2013; 42(2):127–138 [PubMed: 22413736]
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- Pryce H, Durand MA, Hall A, Shaw R, Culhane BA, Swift S et al. The development of a decision aid for tinnitus. International Journal of Audiology. 2018; 57(9):714–719 [PubMed: 29741407]
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- Pryce H, Hall A, Marks E, Culhane BA, Swift S, Straus J et al. Shared decision-making in tinnitus care – an exploration of clinical encounters. British Journal of Health Psychology. 2018; 23(3):630–645 [PMC free article: PMC6190268] [PubMed: 29575484]
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- Thompson DM, Taylor J, Hall DA, Walker DM, McMurran M, Casey A et al. Patients’ and clinicians’ views of the psychological components of tinnitus treatment that could inform audiologists’ usual care: A Delphi survey. Ear and Hearing. 2018; 39(2):367–377 [PMC free article: PMC5839700] [PubMed: 28930785]
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- Thompson P, Pryce H, Refaie E. Group or individual tinnitus therapy: What matters to participants? Audiological Medicine. 2011; 9(3):110–116
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Appendices
Appendix A. Review protocols
Appendix B. Literature search strategies
The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual.7
For more detailed information, please see the Methodology Review.
B.1. Clinical search literature search strategy
Searches for patient views were run in Medline (OVID), Embase (OVID), CINAHL, Current Nursing and Allied Health Literature (EBSCO) and PsycINFO (ProQuest). Search filters were applied to the search where appropriate.
Appendix C. Qualitative evidence selection
Appendix D. Qualitative evidence tables
Download PDF (159K)
Appendix E. Health economic evidence selection
A health economics review was not conducted as this is a qualitative review.
Appendix F. Excluded studies
F.1. Excluded qualitative studies
F.2. Excluded health economic studies
None.
Appendix G
This appendix is not available from the publisher at this time.
Appendix H
This appendix is not available from the publisher at this time.
Appendix I
This appendix is not available from the publisher at this time.
Final
Qualitative evidence review
This evidence review was developed by the National Guideline Centre
Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and, where appropriate, their carer or guardian.
Local commissioners and providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.
NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.
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