Personal Accounts of Anosmia

Personal Accounts of Anosmia

Chief Investigator: Mr Carl Philpott, Senior Lecturer at University of East Anglia and Honorary Consultant ENT Surgeon

Research Team: Dr Sally Erskine, Academic Clinical Fellow, North of England Deanery/UEA

Mr Duncan Boak, Founder Member of Fifth Sense

Lay Summary

Losing the sense of smell (anosmia) is an event that probably affects one in twenty people in the UK. Until recently, there has been no dedicated centre dealing with this problem, as found in other European and North American countries. Studies outside the UK have demonstrated this problem significantly affects the quality of life of the sufferers and is associated with depression and poorer social functioning. There are many causes for people to lose their sense of smell, although the most common ones include long-term swelling/infection of the nose and sinuses (chronic rhinosinusitis), head injuries, following the common cold and with no apparent cause (idiopathic). In October 2010, the Smell & Taste Clinic was established at the James Paget University Hospital to help deal with these problems. Since opening, patients have come from around the UK to be seen. Their stories are often similar; many find that their previous contact with the medical profession regarding their problem has been disappointing and that little has been known or has been offered to help with it. This study seeks to characterise common themes amongst the accounts of these anosmia sufferers and to help identify areas for improvement in three areas: delivery of services to these patients, education of doctors and areas to target for future research. The clinic has already received nearly 100 written accounts of anosmia sufferers’ experience and these will be analysed using special software that will pick out key themes in the text.

Aims and objectives

This study is designed to analyse the written accounts of anosmia sufferers and use this information for the following purposes:

Primary objective:

• 
  To determine what the key themes are that can be identified from the accounts of anosmia sufferers (patients who have no sense of smell)?
  

Secondary objectives:

• 
  Are there any key areas to target for future research or service development?
  
• 
  What are the educational needs for doctors to be better equipped to deal with these problems?
  

Background

Currently olfactory disorders are reported to affect significant numbers of the population with a prevalence as high as almost 20% [1-6]; anosmics (people unable to smell anything) account for 5% of the population [7]. Whilst these patients are known to suffer significant psychosocial consequences from the loss of this sensory modality [8], these patients often receive limited evaluation and support in mainstream Ear Nose and Throat practice in the UK [9]; this mostly stems from the apparent lack of therapeutic options available to clinicians. In October 2010, Mr Philpott established the Smell & Taste Clinic at the James Paget University Hospital to help deal with this need. More recently, a support group, Fifth Sense, has been established by anosmia sufferer, Mr Duncan Boak. In response to the recently publicity for a fundraising and awareness event by Fifth Sense, a large volume of contact e-mails and letters have been received by both Mr Philpott and Mr Boak from anosmia sufferers around the UK, detailing the plight of their condition. In order to formally address the issues raised the research team proposes to carry out a qualitative analysis of these communications.

Methods

The written accounts from anosmia sufferers have already been received by the Mr Philpott as part of their initial contact with the Smell & Taste Clinic for further advice and consultation. These patients will be sent an information sheet and consent form, either via e-mail, post or in person in the clinic, in order to obtain their written informed consent to participate in the qualitative study. The accounts of those who agree to participate will be anonymised, removing all identifiable links to the patient (e.g. name, date of birth) and any identifiable references to any hospitals or doctors with whom the patients have had prior contact. Where accounts given are brief, a hint sheet will be provided to guide them to submit a more detailed account. A framework approach to analysis will be undertaken, using NVivo qualitative software to manage data analysis. Framework analysis is a five-stage process that ultimately allows for sensitive analysis of the relationship between concepts and typologies across and within individuals, thus showing variation in experiences across participants but also drawing out common themes.

Inclusion criteria:

• 
  Any patient who has suffered partial or total loss of their sense of smell (hyposmia/anosmia)
  
• 
  Any patients who has suffered a distortion in their sense of smell (parosmia/phantosmia)
  

Exclusion criteria:

• 
  Any patient under the age of 16
  

Qualitative data will be stored on password protected computers at the University of East Anglia, with individual participants identified only by unique anonymous study identifiers, and all personal contact details destroyed.

Outputs

Once the analysis is complete and clear themes identified, it is anticipated that the findings will be published in a mainstream medical journal with a broad base of medical readership to ensure that the findings are conveyed to a wide range of the medical profession including primary and secondary care doctors alike.

References

1. Landis BN, Konnerth CG, Hummel T, A study on the frequency of olfactory dysfunction. Laryngoscope 2004;114: 1764-9.

2. Murphy C, Schubert CR, Cruickshanks KJ, Klein BE, Klein R, Nondahl DM, Prevalence of olfactory impairment in older adults. JAMA 2002;288: 2307-12.

3. Wysocki CJ, Gilbert AN, National Geographic Smell Survey. Effects of age are heterogenous. Ann N Y Acad Sci 1989;561: 12-28.

4. Bramerson A, Johansson L, Ek L, Nordin S, Bende M, Prevalence of olfactory dysfunction: the skovde population-based study. Laryngoscope 2004;114: 733-7.

5. Nordin S, Bramerson A, Bende M, Prevalence of self-reported poor odor detection sensitivity: the Skovde population-based study. Acta Otolaryngol 2004;124: 1171-3.

6. Deems DA, Doty RL, Settle RG, Moore-Gillon V, Shaman P, Mester AF, Kimmelman CP, Brightman VJ, Snow JB, Jr., Smell and taste disorders, a study of 750 patients from the University of Pennsylvania Smell and Taste Center. Archives of Otolaryngology -- Head and Neck Surgery 1991;117: 519-28.

7. Hummel T, Vennemann M, Berger K, An Epidemiological Study on the Frequency of Smell and Taste Impairment Chem Senses Chem Senses 2007;In press.

8. Hummel T, Nordin S, Olfactory disorders and their consequences for quality of life. Acta Oto Laryngologica 2005;125: 116-21.

9. McNeill E, Ramakrishnan Y, Carrie S, Diagnosis and management of olfactory disorders: survey of UK-based consultants and literature review. J Laryngol Otol 2007;121: 713-20.

Anosmia Accounts Protocol 1.1 06.08.2014