Health Related Quality of Life and Oropharyngeal Dysphagia

Virginie Woisard, Florence Sordes

Virginie Woisard, Voice and Deglutition Unit, Department of Otorhinolaryngology and Head and Neck Surgery, University Hospital of Rangueil-Larrey, Toulouse, France
Virginie Woisard, Florence Sordes, Interdisciplinary Research Unit Octogone, EA4156, Mirail University, Toulouse, France

Correspondence to: Virginie Woisard, MD, PhD, Voice and Deglutition Unit, Department of Otorhinolaryngology and Head and Neck Surgery, TSA30030 University Hospital of Rangueil-Larrey, FR–31059 Toulouse, Cedex 9, France
Email: Woisard.v@chu-toulouse.fr
Received: January 31, 2014
Revised: July 9, 2014
Accepted: July 12, 2014
Published online: October 21, 2014


The historical developpement of the “quality of life (QOL)” construct may explain some differences between several kinds of questionnaires of health Related Quality of life (HRQOL) The aim of this paper is to analyse the HRQOL questionnaires used in the field of oropharyngeal dysphagia from a clinical point of view. A systematic search was performed using the electronic databases Pubmed. Only original research articles describing HRQOL questionnaires in oropharyngeal dysphagia were included. Psychometric properties, correlations with generic QOL questionnaires, Severity scales and objective assessments were analysed. Four questionnaires were included: the SWAL-QOL, the MD Anderson Dysphagia Inventory (MDADI), the Deglutition Handicap Index and the Dysphagia Handicap Index (DyHI). Not all criteria for psychometric properties have been adequately met. However, the fundamental properties were validated, i.e. a complete process broadly used in research or clinical practice by the medical community. These questionnaires, such as generic QOL questionnaires, give independent information in the field of oropharyngeal dysphagia. The connections with the severity of the swallowing disorder are moderate and the connections with objective assessment or aetiologic disease are poor. Notwithstanding the appropriate psychometric properties for research, their indication is limited because (1) no rules are defined for missing answers; (2) when hitting the highest score, no study about the interaction between domains is available; (3) there is no study about the effects of depression and socio economic data; (4) there is no information about the reliability after a long period of time. However, in practice, they help identifying patients’ concerns and understanding their emotional state.

Key words: Dysphagia; Quality of life; psychometric validation

© 2014 The Authors. Published by ACT Publishing Group Ltd.

Woisard V, Sordes F. Health Related Quality of Life and Oropharyngeal Dysphagia. Journal of Gastroenterology and Hepatology Research 2014; 3(10): 1292-1300 Available from: URL: http://www.ghrnet.org/index.php/joghr/article/view/886


Swallowing difficulties can be a symptom of many different disease processes and are associated with adverse health outcomes: malnutrition, dehydration, pneumonia, depression and death. Impaired swallowing can cause increased anxiety, fear and isolation but also a reduction in the quality of life[1]. The value of reporting patient-derived outcomes using disease-specific questionnaires has been appreciated for many years[2] and Quality of life (QOL) measures have largely been utilized in research settings. Their routine usage in clinical settings has been limited and is controversial[3]. One of the important questions in the routine usage of QOL tools in the clinical arena is the identification of potential barriers and benefits. The most commonly identified barriers include: feasibility of having patients completing the questionnaires, the ability of clinicians to interpret the results, and the scarcity of data demonstrating that QOL data can affect individual patient outcomes[4].

The aim of this paper is to analyse the health Related Quality of life (HRQOL) questionnaires used in the field of oropharyngeal dysphagia in a clinical point of view. After a historical reminder on the developpement of the QOL construct, the description of the several Swallowing related QOL questionnaires will lead to a reflection about what these questionnaires really measure and how they can be used in clinical practice.


The term “quality of life (QOL)”, born in the seventies, references the general well-being of individuals and societies. Originally, this term seems to have been a political slogan, expressed by Lyndon B. Johnson in 1964 in a message to the American nation. This Slogan meets the heart of the American constitution of Jefferson, which makes happiness an inalienable right of every American Citizen [5]. The fact remains that this term will have a heightened success ten years later (1978) by the declaration of Alma-Ata of the World Health Organization (WHO)[6], where «health, which is a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity, is a fundamental human right and that the attainment of the highest possible level of health is a most important world-wide social goal whose realization requires the action of many other social and economic sectors in addition to the health sector ». After this declaration, the researchers in the field of medicine explored other components that symptomatology, morbidity or mortality.

Thus, a broad reflection is created around the implication of functional disorders and autonomy on health. Several concepts emerged such as the «Health Status»[7] with two resulting measures: (1) Self-rated health (SRH) and (2) health-related quality of life (HRQoL)[8,9], and some classifications of health and health-related domains by the WHO[10,11]. The first one was the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) (1980). It has triggered a lot of discussions about its concept, definitions and use of the terms handicap and disability. It is why a new International Classification of Functioning, Disability and Health (ICF) was proposed in 2001, where «handicaps» are defined from a more social point of view, taking into consideration opportunities, people’s environment and life roles, depending on individual identity, impairments, and the social context.

Finally, the term “quality of life (QOL)” is used in a wide range of contexts, including the fields of international development, healthcare and politics. In medecine, QOL is a global construct that has developed in response to the perceived need to assess the patient’s overall sense of well-being and how it relates to disease and disease treatment. This view has been supported by the World Health Organization which defines QOL as “an individual’s perception of their position in life, in the context of the culture and values systems in their life, and in relation to their goals, expectations, standards, and concerns”[12], QOL measures seek to obtain a comprehensive, multi-dimensional picture of the patient’s “total health related experience.” In order to achieve this goal, QOL measures evaluate broad domains including emotional, physical, functional, social, financial and spiritual well-being.

Therefore HRQOL reflects the effect of disease and disease treatment on general well-being. It is a much broader concept than handicap: circumstances which are not related to illness, are also taken into consideration[11]. QOL research has, at times, failed to provide health care professionals with clinically relevant and interpretable information that can guide treatment decisions. This has led researchers to attempt to make commonly used research tools more accessible to the practicing clinician[13]. Thus, in spite of the withdrawal of the ICIDH, the use of handicap questionnaires remains available in practice, and specific related QOL questionnaires were created for numerous chronic diseases with a rise in importance of specific and symptom modules.


A systematic literature search was performed using the electronic database Pubmed. All appropriate journal articles up to November 2013 were included. To ensure that a comprehensive approach was adopted in order to retrieve relevant publications, mesh and thesaurus terms were supplemented by the help of the Pubmed advanced search builder leading to deglutition disorders AND Quality of life AND questionnaire corresponding to the following search details: ["deglutition disorders"(MeSH Terms)] OR ["deglutition"(All Fields) AND "disorders"(All Fields)] OR "deglutition disorders"[All Fields]) AND ["quality of life"(MeSH Terms)] OR ["quality"(All Fields) AND "life"(All Fields) OR "quality of life"(All Fields)] AND ["questionnaires"(MeSH Terms) OR "questionnaires"(All Fields) OR "questionnaire"(All Fields)]. Only original research articles describing HRQOL questionnaires in oropharyngeal dysphagia were included. Case reports and editorials were excluded, as well as questionnaires focused on esophageal dysphagia or gastroesophageal reflux disease or questionnaires mainly focusing on Functional Health Status or severity or functional outcomes or focusing on a specific disease. Reference lists of all included articles were searched for additional literature. Next, an extended search was conducted for each of the included questionnaires to ensure that all articles on their development and validation were retrieved using the names of each questionnaire in combination with their respective acronyms. The psychometric properties of the included questionnaires and their conections with objective assessments, generic quality of life questionnaires and severity scales were analysed.


Swallowing specific related QOL questionnaire

The findings of the literature search resulted in a total of 609 abstracts. 11 original questionnaires were identified. Of those, two HRQOL questionnaires relative to Head and Neck cancer were excluded: the European Organization for Research into the Treatment of Cancer C30 and HN35 questonnaires (EORTC)[14-16] and the University of Washington quality of life questionnaire UW-QOL) [17,18]. Five questionnaires were excluded because they focus on on Functional Health Status: the Eating Assessment Tool (EAT-10)[19], the Self-report Symptom Inventory[20] and The Sydney Swallow Questionnaire (SSQ)[21], the Dysphagia Short Questionnaire[22], and the Swallowing Disturbance Questionnaire[23].

Finally, four self-administered questionnaires were included: the SWAL-QOL[24-27], the MD Anderson Dysphagia Inventory (MDADI) [28-31],The Deglutition Handicap Index (DHI)[32-34] and the Dysphagia Handicap Index (DyHI)[35].

Therfore, several tools were constructed for use in clinical research for patients with oropharyngeal dysphagia. There remains a paucity of health outcomes tools from the patients' perspective, such as quality of life questonnaires.

The validation process of the Swallowing-specific related QOL questionnaires

The first Swallowing-specific related QOL questionnaire was proposed by McHorney et al[24-26]. These autors proposed a patient-based, dysphagia-specific outcomes tool to enhance information on treatment variations and treatment effectiveness: the SWAL-QOL, a quality of life outcomes tool for dysphagia researchers and clinicians. Some psychometrics characteristics were completed by others authors, particularly for clinically relevant difference scores[27]. This information is critical for the Interpretation of how patients cope with swallowing problems.

Swallowing troubles are also addressed in most head and neck cancer-specific quality of life Questionnaires, such as the EORTC QLQ-30 and HN35, the FACT-H and N, and the University of Washington Quality of Life Questionnaire[14,18]. However, to obtain more insight in swallowing impairment in this disease, a swallowing-specific quality of life Questionnaires has also been developed, in 2001: the MD Anderson Dysphagia Inventory (MDADI)[28]. The aim of its creators was to provide a validated questionnaire that can be used to assess the outcomes perception of swallowing abilities as a result of treatment and how this swallowing dysfunction affects the QOL in head and neck cancer patients. As with the SWALL-QOL, the validation was completed by other authors[29], in particular for broader range of aetiologies[30].

The Deglutition Handicap Index (DHI) was created as a clinical tool for swallowing disorders whatever the aetilogy of the disorders in 2006[32] on the model of the Voice Handicap Index[36]. The aim was to create a clinical practical tool for assessing the impact of swallowing disorder on the patient: simpler and less comprehensive than the Swall-QOL and not specifically built for head and Neck cancer. This questionnaire was first published in French, translated in English[33,34] and in several European languages by other authors[31].

The dysphagia Handicap Index (DyHI) is the latest developed questionnaire. The goal was to obtain a clinically efficient tool, easy for most populations to complete and to measure QOL in individuals with a variety of medical diagnoses[5].

More details of these self-adminitrated questionnaires are described table 1.

The SWAL-QOL, is considered to be the golden standard for determining quality of life in persons with oropharyngeal dysphagia. It is the only one built on a generic QOL model, widely exploring the several aspects of this construct. This 44-item tool exhibits good internal-consistency reliability and short-term reproductibility[26]. It consists of 11 subscales: 10 quality of life domains and a symptom scale (Table 2).

It is the most frequently used instrument to determine whether oropharyngeal dysphagia impacted the QOL in research. With this goal, it explored the QOL of various aetiogies, such as thyroid disease [37], patients with oral and oropharyngeal cancer[27] amyotrophic lateral sclerosis[38].

The MDADI, the DHI and the DyHI are similar in their structure. They refer to the International Classification of Impairments, Disabilities, and Handicaps with 3 domains: emotional, functional and physical. But, the distribution of similar items is different between the domains of each questionnaire as described in the table 3.

The MDADI consists of 20 items. Besides a global assessment corresponding to a single question, it comprises three sub-scales: the emotional (8 items), the functional (5 items), and the physical subscales (6 items). In the original version of the MDADI, all but two items were scored in such a way that higher scores indicate higher functioning.

The DHI is a 30-item questionnaire on deglutition-related aspects of daily life. The questionnaire is subdivided into three domains of ten items: emotional (psychosocial consequences), functional (nutritional and respiratory consequences), and physical (symptoms related to swallowing). Lower scores indicate higher functioning.

The dysphagia Handicap Index is a 25-item test consisting of a 9-item physical scale, 7-item emotional scale, and a 9-item functional scale.

The details of the psychometrics characteristics of the MDADI, DHI, DyHI are reported in table 4[24-27, 28-30, 32-35].

The quality of a measurement instrument is dependent upon its measurement properties (reliability, validity, responsiveness). However, there are no widely accepted criteria for good measurement properties[39]. Speyer et al[31] in a study on the validity and reliability of the Dutch version of the Deglutition Handicap Index (DHI) and the MD Anderson Dysphagia Inventory (MDADI) for oncological patients with oropharyngeal dysphagia concluded that neither of the MDADI and the DHI generates perfect psychometric data. Not all criteria for psychometric properties have been adequately met. But, a complete the psychometric criteria is a long process including a wide use in research or clinical practice by the medical community.


Correlations with generic QOL questionnaire

Except for the DyHI, these questionnaires analyse the convergent validity, i.e. the extent to wich a measure corresponds with others measures that assess similar concepts, analysing the correlation with a generic QOL questionnaire. The correlations are moderate (r=0.38 to 0.59) but significant with the MOS SF 36[40] (with the Swal-Qol and MDADI) or the Wonca Coop Charts[41] (with the DHI). The correlations are the highest for the MOS social functioning and the social functioning scale of the Swal-QOL or the functionning domain of the MDADI. Similarly, the best correlation is found between the functionning domain and the total score of the DHI, and the Wonca coop charts. We can conclude that QOL in oropharyngeal dysphagia is mainly impacted by the functional consequences of swallowing disorders.

Correlations with severity

Since the clinical validity of these scales leads to verification, they allow distinguishing the severity levels of a given condition. For the SWAL-QOL, the major difference concerning the level of severity is observed for fear, food selection, burden and mental health. For the DHI, the functioning domain is again the highest inverse correlated at r=0.5. Therefore, the scores of these questionnaires reflect partially the severity of oropharyngeal dysphagia.

Correlations with objective assessments

Some authors explored the connections between objective assessments of swallowing and dysphagia specific QOL questionnaires.

The correlations between the scores of the several domains, the total score of the DHI, and the results of some objective assessments are reported in table 5. Regarding the nutritional status indicators, there is a poor inverse correlation with the BMI (mostly with the physical domain). The best correlation is between the mealtime and the functioning domain (r=0.31). As to the results of the videofluoroscopic study (VFS) or Fibreoptic Endoscopic Evaluation of Swallowing (FEES), it is the functioning subcale again that is best correlated to the stasis into the pyriform sinus (r=0.38).

The Correlations between the SWAL-QOL and bolus flow measures for liquid swallows[43] are reported in table 6. All of the statistically significant correlations are small in magnitude (r< -0.21). Ten of the significant correlations involve the oral transit duration measure. Seven of the ten SWAL-QOL scales correlate with the total swallow duration (all but food selection, fear, and sleep).

For a validation study of the University of Washington Quality of Life swallowing domain following oropharyngeal cancer[18], FEES assessment did not correlate well with the patients’ subjective measurements and MDADI.

In conformity with these findings, studies comparing the swallowing problems reported by patient questionnaires showed poor correlation with objective measurements[44-46]. An explanation may be that swallowing dysfunctions are identified in patients who didn’t actually perceive any dysphagia symptoms[47,48], particularly in case of silent aspirations.


We have four validated questionnaires dedicated to oropharyngeal dysphagia

Each questionnaire was built with several questions exploring dimensions. But the statistical methods looking for the several factors failed to find the different scales underlying the construct[13,26,30]. For exemple, in the SWAL-QOL food selection, burden, mental health, social functioning, fear, eating duration, eating desire and communication are the first dimension and are the major contributors to dysphagic-specific QOL. Sleep and fatigue contribute equally to generic quality of life and compose a second dimension of the questionnaire. These results confirm that items specific to the disorder in the field of HRQOL create a homogeneous entity. But, what do they convey?

However, as generic QOL questionnaires, they give independent information. The connections with the severity of the swallowing disorder are moderate and the connections with objective assessment or aetiologic disease are poor. As to an illustration of these observations, e.g. in a study on idiopathic Parkinson disease[49], no relationships existed between swallow-specific QOL and disease duration or severity. Significant relationships existed between swallow-specific QOL and general health-related QOL (r(s) =-0.56, p=0.000) and depression (r(s) = -0.48, p=0.003).

Swallow-specific quality of life questionnaires have the generic aim to describe how swallowing disorders modify the daily life of people. This kind of questionnaires being measurement instruments, they must have high psychometric properties for comparing the impacts between different groups of patients, as well as patients with different diseases or subgroubs of diseases. They are also used to determine the outcomes of several treatments[50-53].

Used with this aim, it would be important to explore the impact of socioeconomic position and the effect of time on the evolution of the scores[54]. These data are lacking for the four questionnaires.

These questionnaires are also used in others goals.

Another application in clinical pratice is to use it as a screening tool. Thomas L et al[18] have studied whether the SWALL-QOL could be used in future comparative studies for oral and oropharyngeal cancer and in clinical practice to identify patients in need of further diagnostics and/or swallowing rehabilitation services. With this aim, they assess swallowing dysfunction in patients treated for oropharyngeal cancer. The evaluation included three questionnaires: the MDADI, the SWALQOL, the University of Washington Quality of Life (UWQOL) and FEES. They found a clear demarcation between UW-QOL levels and food consistency and texture as measured by the SWALQOL (r = -0.86, P < 0.001). Patients scoring 70 or better in the UW-QOL were notably better in MDADI and the SWALQOL. Hence, a cut-off of below 70 could be regarded as a quick screening tool for swallowing dysfunction.

Zuydam AC et al[55] compared the University of Washington Quality of Life (UWQOL) swallowing domain with the MD Anderson Dysphagia Inventory (MDADI) in relation to the need for interventions for swallowing after about one year of treatment. They concluded that patients who score 100 on the UWQOL do not require swallowing to be further evaluated. Those who score 70 could benefit from the detailed MDADI to help clarifying the specific problem and its impact before being referred to speech and language therapy. Those who score less than 70 should be brought to the attention of speech and language therapists to confirm that appropriate support and intervention are in place.

There are few data about the value of these questionnaires in routine at an indidual level for following patients and management decision. Only 2 of them[27,33] have precised the limit of agreement determining the difference score clinically relevant. Without (1) any rules for missing answers, (2) any study about the interaction between domains when one has a highest score, (3) any information about the effects of depression and socio economic, (4) and any information the reliability after a long period of time, their indication in routine is limited.

Place of these HR-QOL questionnaires in the assessment strategies or questionnaires for oropharyngeal dysphagia

QOL measures seek to obtain a comprehensive, multi-dimensional picture of the patient’s “total health related experience”. The developpement of tools to measure this concept led to create HR QOL questionnaires. Their structure is selective and not amenable to change because of the careful psychometric development required to establish a validated questionnaire for multi-centre longitudinal study. This explains probably why the Swall QOL is the less used one in clinical routine.

The three others questionnaires included a symptom inventory in their concept and are a mix between the Functional Health Status and the QOL questionnaire. Giving information on functional and psychosocial consequences, they allow to identify patient concerns and to understand their emotional state. They may avoid mismatch between the patient’s priorities and that of health care providers.

Used as such, these questionnaires may have a goal similar to the patients’ concern inventory (PCI). The concept of a patients concern inventory (PCI) is wider than that of HR-QOL as it allows patients to formulate an individualized record of their concerns, needs and priorities that can be used as a structure to guide out-patient consultations and promote multidisciplinary care[56].

This is particularly thrue in oncology, where the complex needs of cancer patients are recognized as a real challenge leading to the concept of holistic needs assessment (HNA). HNA tools are practical clinical documents and are distinct from psychometrically validated quality of life (QOL) instruments[57].

The HR QOL questionnaires for oropharyngeal dysphagia are psychometrically validated. They are usually longer than FHS but give information about patients’ perception of their trouble. This information is nevertheless insufficient to guide out-patient consultations.

Therefore, these questionnaires complete the panel of Tools helping health care professionals to identify, understand and resolve patients’ priorities and concerns[58].


In practice, HR-QOL in oropharyngeal dysphagia is very important for knowing and measuring the perception by the patients them selves and the impact on their daily life. Four questionnaires are validated. Only one broadly explores the several domains of the QOL (the SWAL-QOL), the 3 others resemble handicap questionnaires. None of them is validated for being used in routine at an individual level for the follow-up of the patients. Despite their good psychometric properties for research, the lack of correlations with other clinical data and the fact that severe swallowing disorders may be associated to any dysphagia symptoms contribute to this restriction.


There are no conflicts of interest with regard to the present study.


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Peer reviewers: M. W. M. van den Brekel, Department of Head and Neck Oncology and Surgery, The Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands; Suely Mayumi Motonaga Onofri, Department of Speech and Language Therapy, S?o Paulo State University - UNESP, Av. Hygino Muzzi Filho, 737, Campus Universitário, Marília, S?o Paulo, 17525-900, Brazil.


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