THE DEVELOPMENT OF THE IWI SCALE FOR NON-COMMUNICABLE DISEASE DISTRESS ASSESSMENT
Psychological distress is known to be highly prevalent among individuals with chronic diseases. A lifetime of medication dependence and
lifetime changes, disease type and severity, age, and social support all have an impact on the degree of psychological distress experienced
(Taylor et al., 2009). However, a review of the literature for the current study has revealed that the terms “stress” and “distress” are used by the
scientific and lay community interchangeably. Moreover, all the studies done for the development of distress scales never included a validated
definition of “distress”. A validated operational definition of both terms is needed for the sake of scientific consensus so that researchers be able
to communicate with each other and with the public. Distress can be described as a chronic state characterised by an inability to adapt to one or
more acute stressors. The result is that the individual is no longer able to cope with the circumstances leading to the compromise of well-being.
Defining distress as a chronic condition and stress as an acute or acute-on-chronic condition is the first objective of this work. With regard to the
procedures included in the definition of distress, the authors propose that researchers use the World Health Organisation’s (WHO) (2013a)
conceptualisation of distress as shown in Figure 1:
Guilt / Shame
↓ or ↑ Appetite
↓ or ↑ Sleep
↓ or ↑ Motor activity
Not able to care
for self or
Figure 1. Conceptualisation of distress by the WHO (2013)
The study of disease-related distress started in the late 50’s but it was not until two decades later that a structured and clinicallyapplicable instrument was developed: The Symptom Distress Scale (SDS) (Beecher, 1957; McCorkle & Young, 1978). Oncology
patients were the first and are the most studied population group for the impact of diagnosis and symptoms on their well-being.
Looking now at the literature regarding the reimaing non-communicable disorders population, distress is rarely measured with diseasespecific instruments. Generic instruments are not specific for a particular disorder and aim to be relevant to a wide range of patients and
the general population. Disease-specific instruments tend to be more appealing to researchers. The commonly used generic distress
tools are the HADS, the GHQ-20 and the EQ-5D (Fitzpatrick et al., 2006).. However, an instrument that is too specific risks not being
sensitive to co-morbid complaints. That is why most clinicians and researchers use a combination of generic and specific instruments in
the assessment of health outcomes. That said, methodological weaknesses relating to the exclusive use of non-specific tools means that
somatic and psychological distress symptoms may be confounded in the literature.
The validity and acceptability of the Distress Thermometer (DT) (Roth et al., 1998) has been shown in multiple international studies in
the oncology population (Mitchell, 2007; Donovan, Grassi, McGinty, & Jacobsen, 2013). In an aim to enhance the validity of the DT,
Akizuki and his collaborators developed an Impact Thermometer (IT) to be used in combination with the DT as a “brief screening tool
for adjustment disorders and/or major depression in cancer patients” (Akizuki, Yamawaki, Akechi, Nakano, & Uchitomi, 2005). The
synergy of the combined effects of the DT and the IT has been the subject of relevant international and New Zealand articles (Mitchell,
2007; Baken & Woollie, 2011). For the development of both the DT and the IT, developers have asked healthcare professionals and
patients a battery of questions and selected the most relevant ones to be included in their final instrument. An in depth research of the
literature has shown the absence of an instrument that uses the internationally validated diagnostic standards of the DSM (APA, 2013).
The aim here is to develop an instrument that can reliably be used by clinicians to assess not only oncology patients but also those with
the most prevalent chronic conditions in developed countries. The tool that will be validated in the current study will use the WHO
definition of distress, which meets the DSM-V criteria of Adjustment Disorder With Mixed Anxiety and Depressed Mood (309.28) and
Adjustment Disorder With Mixed Disturbance of Emotions and Conduct (309.4) (APA, 2013). Our rationale is that many chronic
patients find themselves unable to adjust to their condition and sometimes they may not be aware of it or willing to admit it. This
situation is different from a mood disorder or anxiety associated with a medical condition that can be cured, like an infection or many
one-off surgical procedures. We have developed an instrument that will assess for distress in the oncology and chronic disease
population and we call this new tool the “Integrated Wellbeing Inventory” or IWI.
Making tests short, easy, visually appealing and free of charge for patients and administrators all improve acceptability.
Table 1 shows the inclusion and exclusion criteria considered for the development of our tool.
Table 1. IWI inclusion and exclusion criteria.
Table 2. Health-instrument domains in the IWI.
The instrument is free of charge.
Researcher or clinician administration.
There is considerable published evidence of the instrument's
reliability, validity and acceptability in the target population.
Anxiety; depression; impaired memory, alertness, cognition, emotion, and/or
behaviour / conduct.
Stigma; communication problems; impaired social interaction and integration;
role relationships (with partner, family, friends, peers); work; leisure; healthcare
service availability and satisfaction.
Increased religious beliefs. Concerns about purpose of life.
Long and difficult to understand tools.
The instrument is self-reported.
Mobility, pain, fatigue, altered appetite, gastrointestinal complaints, cramps,
altered sleep pattern.
The instrument is short and simple.
Insufficient empirical evidence regarding the instrument’s
The instrument has been recommended for use by clinicians and
researchers over the years in patients with the target diseases.
The bulk of the literature comes from the instrument’s
developers or their collaborators.
The instrument was developed in a country with the most
language and cultural similarities to NZ, namely North America,
the UK, Australia, or NZ.
Culturally insensitive instruments.
The three dimensions most commonly assessed in patient-reported health instruments (Garratt, Schmidt, Mackintosh, & Fitzpatrick,
2002) considered for the validation of the chronic disease distress thermometer are depicted in Table 2. The author added a fourth
one – spirituality - in the IWI to integrate a key component of mankind since prehistory.
THE INTEGRATED WELLBEING INVENTORY [IWI]
The IWI is a one-page questionnaire containing a screening form and a complete form. The screening form integrates in one
thermometer the Distress Thermometer (DT) and the Impact Thermometer (IT). It also collects demographic information about the
patient: Age, ethnicity, and gender. The complete version [IWI-CV] has been designed using the WHO conceptualisation of distress
and the DSM-V symptoms of 6 of the 7 domains included.
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