Clin[ Otolaryn`ol[ 0886\ 22, 26Ð39

Patient-reported problems associated with dysphonia

S[SCOTT�\ K[ROBINSON$\ J[A[WILSON% + K[MACKENZIE��Department of Otolaryn`olo`y and Head and Neck Sur`ery\ $Medical Research Council Institute of Hearin` Research\ Glas`owRoyal In_rmary and %Department of Otolaryn`olo`y and Head and Neck Sur`ery\ Freeman Hospital\ Newcastle!upon!Tyne\ UK

Accepted for publication 7 May 0885

SCOTT S [ \ ROBINSON K [ \ WILSON J [A [ + MACKENZIE K ["0886# Clin[ Otolaryn`ol[ 22, 26Ð39

Patient-reported problems associated with dysphonia

In the UK there has been little assessment of the e.cacy of therapy for patients with dysphonia[ Currentobjective assessment methods "e[g[ acoustical analysis# do not correlate well with patient symptoms[Existing subjective measures are based on clinical impression[ To date\ no measure has been based on thepatient|s experience and the aim of this study was to explore the di.culties that patients encounter as aconsequence of their illness or disability[ One hundred and thirty!three dysphonic patients completed anopen!ended questionnaire where they were asked to make a list of the problems they experienced due totheir voice disorder[ Responses were categorized using the WHO International Classi_cation ofImpairments\ Disabilities and Handicaps[ A total number of 356 problems were listed] 59) impairments\15) disabilities and 03) were handicap related[ The six major impairments related to altered voice andthroat symptoms[ Although the majority of disabilities resulted from lack of projection and clarity\ themost frequently reported was singing[ Reported handicaps encompassed psychological\ emotional andemployment!related di.culties and e}ects on family and friends[ People with dysphonia experience social\lifestyle and employment di.culties as a consequence of their voice disorder[ Responses to the open!ended questionnaire have considerable practical applications in targeting more comprehensive treatmentstrategies[

Keywords dysphonia impairment disability handicap

Changes in the structure and ethos of the National Health Acquiring this information is most easily achieved by usingan open!ended problems questionnaire where patients areService have led to increasing emphasis being placed on the

assessment of change in health status\ patient bene_t and asked to make a list of the di.culties they have due to theirproblem[ Open!ended problems questionnaires were _rst usedsatisfaction resulting from a particular intervention[ This has

inevitably resulted in the need to develop valid and reliable by Barcham and Stephens to investigate the main problemshearing impaired people encountered as a result of their hear!questionnaires to measure change in health status[ Available

measures of general health status may be insensitive to changes ing loss[0

In 0879 the World Health Organisation proposed that thein well!being which result from improvement in a speci_ccluster of symptoms due to disease in a single organ[ The International Classi_cation of Impairments\ Disabilities and

Handicaps1 could be used as a conceptual framework toevaluation of health outcomes is therefore likely to includedisease!speci_c measures along with more global measures of describe the consequences of a disease or disorder[ Figure 0

illustrates the principal events in the development of illness[health[Before a disease!speci_c questionnaire can be designed it is First\ an abnormality occurs in the structure or functioning

of the body[ Second\ the individual becomes\ or is made awarevital to know the di.culties that patients encounter as aconsequence of their illness or disability[ Without such knowl!edge any questionnaire may be biased towards the question!naire designer|s and other professionals| assumptions and mayfail to pick up signi_cant problem areas for the patients[

Correspondence] K[ Mackenzie FRCS\ Department of Oto!laryngology and Head and Neck Surgery\ Glasgow Royal In_rmary\

Figure 0[ WHO conceptual scheme[G20 1ER\ UK

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27 S[Scott et al[

that they are unhealthy and this awareness leads to the recog!nition of abnormalities of structure\ function or psyche\ i[e[impairments[ Impairments represent dysfunction at the organlevel\ e[g[ hoarseness resulting from a diseased larynx[ Thethird level is represented by alterations in the performance orbehaviour of the individual which are called disabilities\ e[g[inability to sing resulting from the laryngeal disorder[ At thefourth level\ impairment or disability may place the individualat a disadvantage to others and this disadvantage representshandicap\ manifest by reduced social contact which occurs asa result of reduced ability to communicate[

While it is desirable to avoid professional assumption and to Figure 1[ Categorization of 356 problems reported by 022 dysphonicelicit responses in an open!ended way\ the WHO classi_cation patients using WHO framework[

scheme provides a useful conceptual framework within whichto place the responses and could provide a structure for the

work\ the problems were grouped into the following cat!future development of a dysphonia impairment\ disability andegories] impairment\ disability and handicap[handicap questionnaire[

Two hundred and seventy!seven "59)# of the total numberThere is a relatively large literature on the aetiology\ voiceof reported problems were grouped into the impairment cat!characteristics\ treatment and psychology of patients with dys!egory[ Problems related to di.culties with everyday activitiesphonia[ Nonetheless\ there has been no investigation of the"disabilities# accounted for just over a quarter "n � 012# andproblems patients report as a result of their voice disorder[sixty!seven "03)# problems were handicap related "Figure 1#[The e}ects of hoarseness on communication with others is

The six major impairments reported by respondents relatedlikely to a}ect psychological well!being\ social interactionsto altered voice and throat symptoms "e[g[ hoarseness andand employment[ The symptom of dysphonia is oftensore throat# which account for 65) of reported impairments[su.cient to require speech therapy\ leading us to postulateThe dysphonic patients mentioned a total of 07 other impair!that there is a signi_cant health impact from these psycho!ments and whilst some impairments\ such as sore neck andsocial di.culties[ The aim of this study was to characterizelump in the throat\ are reported by several respondents\the range of health problems experienced by a large numberothers\ such as choking and dizziness\ are idiosyncratic "Tableof dysphonic patients as a result of their voice disorder[0#[

The majority of disabilities resulting from dysphonia relateto a lack of projection and clarity[ Disabilities include prob!

Method lems communicating in groups and competing against back!ground noise[ The only disability mentioned by more than aTwo hundred and _ve patients "51 men\ 032 women# who hadquarter of the 022 respondents was di.culty with singing\been referred complaining of hoarseness between 0889 andincluding di.culty reaching the same range of notes as pre!0884 to the Phoniatric Clinic at Glasgow Royal In_rmaryviously and an inability to sing for extended periods "Tableparticipated in the study[ Each was sent an open!ended prob!1#[lems questionnaire and requested to write down the di.culties

Only thirty!one respondents reported handicaps as a resultthey had as a result of their voice problem[ They were askedof their voice disorder but these handicaps encompassedto write down as many di.culties as they could think of\psychological and emotional issues\ employment relatedstarting with the greatest di.culty _rst[ After three mailingsdi.culties and e}ects on family and friends "Table 2#[over a 2!month period\ 022 "54)# patients "32 men\ 89

women# had returned completed questionnaires[

Conclusions

Despite considerable research into the aetiology\ phoniatricResultscharacteristics\ treatment and psychology of dysphonia thisstudy is the _rst to use an open!ended problems questionnaireThe mean age of patients who returned completed open!ended

questionnaires was 43 yr "range 07Ð79#[ to characterize the self!reported problems of patients withdysphonia[The total number of problems listed by the 022 patients was

356[ The patients reported between one and nine problems The _ndings suggest that people with dysphonia experiencea wide range of di.culties as a consequence of their voicewith a mean of 2[4[ In order to classify the 022 questionnaires

a frequency count was made of the number of respondents disorder[ The overall impact of dysphonia upon the patient iscomparable to the di.culties experienced by patients withwho mentioned a particular problem[ Using the WHO frame!

Þ 0886 Blackwell Science Ltd\ Clinical Otolaryn`olo`y\ 11\ 26Ð39

Patient!reported problems associated with dysphonia 28

Table 0[ Impairment reported by patients as a result of dysphonia Table 2[ Handicap reported by patients as a result of dysphonia—––––––––––––––––––––––––––––––––––––––––––––––––––––––––––—––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Number of Number ofDi.culty respondentsDi.culty respondents

*ÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐ *ÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐA}ects job 00Hoarse 44

Loss of voice 39 Frustrated 09Less socializing 7Sore throat 28

Cough:clear throat 20 Loss of con_dence 6Ridicule 4Dry throat 13

Weak voice 10 Nervous strain 4Depressed:unhappy 4Lump in throat 09

Di.culty swallowing 8 Embarrassed 4Strain on family and friends 1Ran out of breath 7

Sore neck 6 Lonely 1Worry about cause 1Phlegm 6

Tight throat 3 Lifeless and weak 1Fear of not being able to get help 0Sore ears 3

Throat infections 2 Fear of throat infections 0Being ignored 0Swollen glands 2

Blocked nose 1 Total 56—––––––––––––––––––––––––––––––––––––––––––––––––––––––––––Rise in pitch 1

Choking 1Headaches 0Stammer 0 ated with an expressive rather than a receptive communicationPains in chest 0 disorder[Hearing impaired 0

Sixty per cent of the 356 problems were categorized asDizziness 0impairments according to the WHO classi_cation system[ AsChanged speech patterns 0

Total 166 well as the six cardinal impairments "Table 0#\ about which the—–––––––––––––––––––––––––––––––––––––––––––––––––––––––––– otolaryngologist normally questions the patient\ there were 07

further impairments reported by patients[ Otolaryngologistsand speech and language therapists should be aware of this

hearing loss[ A recent study2 using an open!ended problems wide variety of impairments and that some patients may bequestionnaire with 010 hearing!impaired people found a total reluctant to disclose their more idiosyncratic problems[ Theof 227 problems listed\ an average of 1[7 problems per patient[ wide range of potential impairments provides some supportIn comparison\ the 022 dysphonics in this study listed a total for the one!to!one approach adopted by speech and languageof 356 problems\ giving an average of 2[4 problems per patient[ therapists\ allowing the therapist to tailor each session to theThis suggests that there is a wider range of problems associ! speci_c problems of the individual patients[

Several of the reported disabilities could be grouped to!gether as relating to lack of volume or power "n � 27#\ whilst

Table 1[ Disability reported by patients as a result of dysphoniaother problems were grouped together as relating to lack of—––––––––––––––––––––––––––––––––––––––––––––––––––––––––––clarity "n � 32#\ both of which are areas where the speech andNumber of

Di.culty respondents language therapist has an important role to play "Table 1#[*ÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐÐ Unexpectedly\ the disability reported by the largest numberProblems singing 24 of respondents "n � 24# was speci_c and related to problemsUnable to talk:be heard in company 03

with singing[ Speech and language therapists prefer to describeDi.culty being understood 03themselves as voice therapists in this context and most wouldProblems talking on phone 01

Unable to shout:project voice 8 not undertake singing coaching[ While the professional voiceDoes not sound like normal voice 7 user who experiences problems is generally referred to a sing!Talk less 6 ing teacher\ the amateur or non!performing voice user mayE}ort of speaking tiring 5

receive little treatment directed at the singing voice[ This _nd!Di.culty competing against background noise 4ing suggests that a small proportion of patients with dys!Unable to ask for things in shops 3

Others do not recognize voice 2 phonia may bene_t from therapy targeted speci_cally at theUnable to read aloud 1 singing voice[Di.culty attracting attention 1 Although only 03) of the total number of responses areToo many words at once 0

related to the handicap or social disadvantages caused byConsonants unclear 0dysphonia\ these handicaps encompass social\ psychologicalTotal 012

—–––––––––––––––––––––––––––––––––––––––––––––––––––––––––– and employment problems "Table 2#[ Such handicaps have a

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39 S[Scott et al[

potential to cause signi_cant impact upon an individual|s life Acknowledgementand are likely to be addressed in speech therapy sessions

This work was supported by a Scottish O.ce Home andthrough the use of counselling skills[

Health Department Grant] K:RED:3:C138[Patients with dysphonia experience social\ lifestyle and

Referencesemployment di.culties as a consequence of their disordersand may bene_t from targeted therapy[ We foresee a role for 0 BARCHAM L[J[ + STEPHENS S[D[G[ "0879# The use of an open!endedthe method we have used to derive a voice symptom list\ both problems questionnaire in auditory rehabilitation[ Br[ J[ Audiol[

03\ 38Ð43in assessing the important therapeutic issues for the patient1 World Health Organisation "0879# International Classi_cation ofand also in monitoring the di}erential response of various

Impairments\ Disabilities and Handicaps "ICIDH#[ WHO\ Genevasymptoms to therapy[ We are presently adapting the _ndings 2 LORMORE K[A[ + STEPHENS S[D[G[ "0883# Use of the open!endedof the study to the construction of a standard voice symptom questionnaire with patients and signi_cant others[ Br[ J[ Audiol[ 17\

inventory to facilitate outcome evaluation in voice disorder[ 70Ð78

Þ 0886 Blackwell Science Ltd\ Clinical Otolaryn`olo`y\ 11\ 26Ð39