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The Integrated Wellbeing Inventory (IWI) by Virginia M. Westerberg


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The Integrated Wellbeing Inventory (IWI) is a psychometric tool to assess for distress in the non-communicable disease population.

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The Integrated Wellbeing Inventory (IWI) by Virginia M. Westerberg

  1. 1. INTEGRATED WELLBEING INVENTORY© [IWI] Created by Virginia M. Westerberg (2014) Copyright Policy The Integrated Wellbeing Inventory (IWI) by Virginia M. Westerberg is licensed under a Creative Commons Attribution 4.0 International License. Based on a work at Permissions beyond the scope of this license may be available at the above website. You are free to copy, distribute, and adapt the work, as long as you attribute the work to Westerberg, V.M. (2014) and abide by the licence terms.
  2. 2. THE DEVELOPMENT OF THE IWI SCALE FOR NON-COMMUNICABLE DISEASE DISTRESS ASSESSMENT INTRODUCTION 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: DEPRESSIVE SYMPTOMS ANXIETY SYMPTOMS Sadness Anxiety Withdrawal Worry Guilt / Shame Fear ↓ or ↑ Appetite Hypervigilance Irritability ↓ or ↑ Sleep ↓ or ↑ Motor activity Anger Concentration problems Concentration problems Fatigue DISTRESS Fatigue CONDUCT DISTURBANCE EMOTIONAL SYMPTOMS DISTURBAN CE Not able to care for self or dependent others SYMPTOMS Grief Crying Figure 1. Conceptualisation of distress by the WHO (2013)
  3. 3. 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.
  4. 4. 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. Exclusion criteria 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. Psychological symptoms 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. Spiritual changes 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. Paying instruments. The instrument is short and simple. Physical symptoms Social impairment symptoms Inclusion criteria Insufficient empirical evidence regarding the instrument’s properties. 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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