Quality of Life: Questionnaires and Questions

Abstract

Quality of life (QoL) is a phrase often used in health care settings at policy and administration levels, in clinical assessments of therapies, and in clinical management of individual cases. While QoL is a broad concept that covers such areas as social, environmental, economic, and health satisfaction, health-related quality of life (HRQL) is less wide ranging, including mental and physical health and their consequences. First, I question the singularity of HRQL, suggesting there are at least two distinct meanings of HRQL. Second, questionnaires designed to assess individual patients' HRQL allow a limited range of ways for patients to express their state of being. The Medical Outcomes Study Short Form (SF-36), which operationalises HRQL for a traditional clinical setting, is used to show in detail the restricted options that are available for patient respondents. The communications limitations of utility-based measures, designed as cost-effectiveness measures but often used as though they were HRQL instruments, are also discussed. For assessing the HRQL of individuals in a health setting, such questionnaires can provide only a starting point, which should be supplemented with good interaction and communication.

Acknowledgments

The “Language and Global Communication” research programme of the Centre for Language and Communication Research has been funded for a 5-year period by the Leverhulme Trust.

Notes

¹See, for example, www.cdc.gov/hrqol. The public health perspective is not addressed as such in this article.

²“Quality of life” is often used in a health setting when what is meant is “health-related quality of life.” This paper deals with the health-related species.

³Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 states (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948.

⁴This is not the case for public health, however. Fitzpatrick appears to be commenting on only some health professionals, general practitioners (GPs) for example.

⁵Public health does take these factors into consideration, however.

⁶If my eczema is related to my dental health, however, one would hope—and indeed expect—that a dentist would bring this up as a topic of conversation and consultation.

⁷Very often distinctions are made on the type of QoL instrument, usually along a generic/disease specific dimension (Michalos, 2004, p. 53; Naughton & Shumaker, 2003, p. 75).

⁸Fitzpatrick (1996) makes a very similar distinction between experiential and normative QoL.

⁹There are, according to Fitzpatrick (1996), six common methods: standard gamble, time trade off, category scaling, magnitude estimation, equivalence, and willingness to pay (p. 150).

¹⁰The other three dimensions are (1) number of patients receiving the program, (2) the survival gain, and (3) the probability of the treatment being successful.

¹¹For a description of how QALYs are determined numerically, see Kind, Rosser, and Williams, 1982, p. 160. For QALYs and DALYs, see Gold, Stevenson, and Fryback (2002).

¹²The US Panel on Cost Effectiveness in Health and Medicine (PCEHM), however, recommends that a “representative sample of informed members of the community” be consulted (Gold et al., 2002, p. 122).

¹³“Quality of life” does impact on NICE (the National Institute for Clinical Excellence) guidelines for approved treatments in the United Kingdom, for example.

¹⁴It should be noted that there are some patient groups (notably those suffering from alcoholism and mental illnesses) who are not considered “competent” to reflect or report on their own HRQL (cf. Farsides and Dunlop, 2001).

¹⁵While I do agree with Antaki and Rapley's conclusions, it does seem that the data they analyse tell us more about the difficulties of administrating questionnaires to mentally disabled patients.

¹⁶It should be noted that this second item is not used in any aspect of scoring the SF-36.

¹⁷In version 1 this was “full of pep.”

¹⁸McHorney (1999) also notes the general low levels of use of any HRQL instrument by clinicians for individuals (pp. 316–317).

¹⁹Indeed, Coupland, Coupland, and Robinson (1992) note such questions are “often not intended to produce self revelation” but to acknowledge the other (p. 217).