History of demoralization
Various definitions of demoralization have been proposed since it was introduced. Frank (Reference Frank1961) first introduced the term demoralization as a definite cluster of symptoms, a state akin to the ‘giving up–given up’ complex, in which one primarily experiences persistent feelings of subjective incompetence or failure to meet one's own or others’ expectations, an inability to cope and problem solve. An inability to cope is understood in Frank's works as feelings of being overwhelmed and defeated by one's circumstances and of being unable to effectively engage in problem-solving and perform tasks. According to the author, this state characterized psychotherapy clients seeking treatment who had exhausted personal resources, and were no longer able to cope with their personal problems. For this reason the demoralized individual responded readily to help and encouragement, as they were at a heightened state of suggestibility which interacted with expectations of improvement in the psychotherapeutic context (Frank & Frank, Reference Frank and Frank1991).
Schmale & Engel (Reference Schmale and Engel1967) subsequently identified a psychological state which may precede illness characterized by helplessness or hopelessness, feelings of being at a loss and ‘at the end of one's rope’ and unable to cope, naming it the ‘giving up–given up’ complex. An inability to cope, an essential element of the ‘giving up–given up’ complex, was described by Engel (Reference Engel1968) as the sense of psychological impotence in which previously used strategies, whether psychological or social, seem no longer effective in dealing with changes in the environment.
‘Giving up’ or demoralization indicated a complex state that included both helplessness and hopelessness. Sweeney et al. (Reference Sweeney, Tinling and Schmale1970) provided a differentiation of these giving up affects. The qualitative differences between the two affects were postulated to have distinct and underlying developmental bases. Helplessness was defined as a feeling of being left out or abandoned where loss of gratification is perceived as caused by external events or objects and cannot be regained by active self-intervention. Hopelessness was hypothesized to develop instead when the individual feels that he/she alone is responsible for the loss and that there is nothing that he or anyone else can do to overcome it. Helplessness is thus more active than hopelessness because of the orientation toward the environment. Further, the individual feels no personal responsibility for the events leading to the feeling. Hopelessness entails a self-perception of inadequacy and a sense of responsibility for the event, associated with the perception that it will last forever (Sweeney et al. Reference Sweeney, Tinling and Schmale1970).
This intermittent and transient state, in the presence of vulnerability to organic diseases, was hypothesized to be able to alter and compromise one's biological economy and consequently disrupt one's ability to counteract pathogenic processes (Schmale & Engel, 1967). Klein & Davis (Reference Klein and Davis1969) viewed it as a state characterized by the pervasive change in self-image rather than anhedonia. Subsequently, utilizing Frank's (Reference Frank1973) conceptualization as a starting point, de Figueiredo & Frank (Reference de Figueiredo and Frank1982) further elaborated demoralization as a syndrome with two main distinct components: personal distress and subjective incompetence.
Fava et al.'s (Reference Fava, Freyberger, Bech, Christodoulou, Sensky and Wise1995) definition of demoralization integrates Schmale & Engel's giving up–given up complex (Schmale & Engel, Reference Schmale and Engel1967) and Frank's (Reference Frank1973) demoralization syndrome. The authors introduced this conceptualization within the Diagnostic Criteria for Psychosomatic Research (DCPR), in an effort to translate psychosocial variables derived from psychosomatic research into an operational diagnostic framework. Demoralization was subsequently suggested to become a part of the ‘Psychological Factors Affecting Medical Conditions’ category of the DSM as a clinical specifier (Fava et al. Reference Fava, Fabbri, Sirri and Wise2007).
Clarke & Kissane (Reference Clarke and Kissane2002) in an attempt to operationalize existential distress in the medical context, elaborated a definition of the demoralization syndrome characterized by hopelessness, helplessness and meaninglessness. Demoralization is a frightening sense of hopelessness, meaninglessness, not coping and essentially ‘not knowing what to do’ (p. 737).
Previous narrative reviews on the demoralization syndrome have focused primarily on the phenomenological differentiation of the syndrome from major depressive disorder (MDD) (de Figueiredo, Reference de Figueiredo1993), in addition to providing suggestions for future research and treatment considerations (Angelino & Treisman, Reference Angelino and Treisman2001; Clarke & Kissane, Reference Clarke and Kissane2002). Clarke & Kissane's (Reference Clarke and Kissane2002) and Rickelman's (Reference Rickelman2002) reviews instead have presented theoretical models which highlight the role of stressors in the emergence of demoralization symptoms. While these previous reviews have provided valuable phenomenological considerations and comprehensive theoretical models of the demoralization syndrome, to the best of our knowledge no systematic review of demoralization has been attempted.
The aims of the present systematic review with qualitative data analysis which follows Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) criteria (Moher et al. Reference Moher, Liberati, Tetzlaff and Altman2009) are to first provide a review of the available assessment instruments of the demoralization syndrome which have been validated. Second, the review aims to report main findings regarding the demoralization syndrome that emerge in the literature. Such main findings will be qualitatively analyzed and presented in major themes. Third, the review aims to compare and report evidence for the clinical utility of the demoralization instruments based on findings. The review aims to also provide clinical implications of the differentiation of demoralization from mood disorders. A conceptual synthesis which compares existing literature with interpretive models regarding the demoralization syndrome and its components will be provided (Table S1) (all Tables appear in the Supplementary online material).
Methods
Eligibility criteria
Eligible articles were in the English language and published in peer-reviewed journals. Studies were selected for inclusion if the psychological assessment consisted of validated demoralization instruments and if they were conducted in a medical setting and/or evaluated medical patients as participants. Studies assessing demoralization in community samples were included as well to be able to compare prevalence rates between medical patients and the general population. Studies which assessed ‘demoralization’ with measures typically reserved for depressive symptomatology were excluded as they seem to consider demoralization as a single component of major depression rather than considering demoralization as a distinct syndrome. Furthermore, studies that used demoralization scales that are part of a larger instrument and cannot be administered independently of that instrument were also excluded.
Information sources and searches
Medline and PsycINFO were systematically searched from inception to January 2014 utilizing the sole key word demoralization. The use of demoralisation as key word yielded substantially fewer results that in any case overlapped with the results found using the key word ‘demoralization’. Using variants such as demoralized, demoralizing, or demoralised, demoralising also led to fewer results containing references to demoralization in lay terms rather than to a well-defined psychological state. Titles and abstracts were screened by one reviewer (L.T.). Articles that appeared potentially relevant were retrieved, and two reviewers (L.T. and E.T.) independently assessed each of the full reports, arriving at a consensus regarding eligibility. The methods described here fulfilled PRISMA guidelines (Moher et al. Reference Moher, Liberati, Tetzlaff and Altman2009). During the electronic search, for each excluded study we determined which elements of the eligibility criteria were not fulfilled. At this stage of selection, studies were excluded for the following reasons: the sample was not medically ill or not a community sample, the context was non-medical, the study did not include assessment of demoralization. Case studies were excluded as well. Remaining studies received full-text review to verify the inclusion of a validated demoralization instrument among the assessment measures. Web of Science was subsequently used to supplement the search. The review was supplemented by a manual search of the literature and references of selected studies. The study selection methodology is reported in the flow diagram (see Fig. 1). Data were extracted about: participant characteristics, study characteristics and context, instruments used, and the authors’ main findings regarding demoralization and evidence for the clinical utility of the instruments.
Fig. 1. PRISMA flow diagram. Identification, screening, eligibility and inclusion of data sources for the study.
Presentation and synthesis of results
First, the results concerning selection of articles and study characteristics will be presented. Second, the assessment instruments which were identified will be described and discussed as well as their validation. Subsequently, a qualitative analysis which gathers main findings that emerge in the literature on demoralization into themes will be presented. Furthermore, evidence of the clinical utility of the instruments will be reported.
Results
Selection of articles and study characteristics
The literature search of Medline and PsycINFO databases yielded a total of 772 abstracts, 445 after exclusion of duplicates. A citations search of Web of Knowledge yielded 238 citations, of which 188 remained after removal of duplicates. In this first stage of selection, a total of 633 abstracts resulted in the search. Screening based on titles and of 482 abstracts resulted in the exclusion of 397 articles using the inclusion criteria. Full-text review of the resulting 82 articles led to the exclusion of 12 studies which did not contain validated methods to assess demoralization. A total of 70 studies were identified in the electronic search. Four studies were found through supplementary manual search of the literature and references of selected studies for a total of 74 studies included in the review.
Among the 74 studies, 19 used the Psychiatric Epidemiological Research Interview – Demoralization Scale (PERI-D; Dohrenwend et al. Reference Dohrenwend, Shrout, Egri and Mendelsohn1980), 40 used the DCPR (Fava et al. Reference Fava, Freyberger, Bech, Christodoulou, Sensky and Wise1995), 13 used the Demoralization Scale (DS; Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004), and two used the Subjective Incompetence Scale (SIS; Cockram et al. Reference Cockram, Doros and de Figueiredo2009). Main findings across studies and across instrument use generally fell within the following themes: validation of the measures, prevalence rates of the demoralization syndrome, differentiation from mood disorders, factors or characteristics associated with presence of demoralization (sociodemographic factors, stress, somatization, and pain, illness behavior, psychological well-being), and health outcomes associated with demoralization.
Assessment methods and validation data
Of the four main instruments that assess demoralization that were identified, three are self-report questionnaires yielding a dimensional assessment while one is a structured interview which yields a categorical diagnosis. The three scales will be described, followed by the DCPR interview.
PERI-D
The PERI-D (Dohrenwend et al. Reference Dohrenwend, Shrout, Egri and Mendelsohn1980) is a multidimensional self-report questionnaire comprising 27 items which constitute eight dimensions or subscales of the PERI, developed to screen psychopathology in epidemiological and community settings. The items are constructed with a 5-point response scale ranging from never, a score of 0, to very often corresponding to a score of 4. A total score is calculated by adding all item scores and dividing by 27. The PERI-D dimensions are anxiety, sadness, hopelessness-helplessness, dread, confused thinking, poor self-esteem, psychophysiologic symptoms and perceived physical health.
PERI-D has been validated in a New York City sample, demonstrating a high concurrent validity with the Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, Reference Radloff1977) and the Bradburn Negative Affect Scale (Bradburn, Reference Bradburn1969; Vernon & Roberts, Reference Vernon and Roberts1981). The measure has demonstrated high reliability coefficients in community samples (Dohrenwend et al. Reference Dohrenwend, Shrout, Egri and Mendelsohn1980; Vernon & Roberts, Reference Vernon and Roberts1981; Page & Cole, Reference Page and Cole1992; Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011), in medical patients with pain experiences (Lennon et al. Reference Lennon, Dohrenwend, Zautra and Marbach1990; Gallagher et al. Reference Gallagher, Marbach, Raphael, Handte and Dohrenwend1995) and healthy controls (Gallagher et al. Reference Gallagher, Marbach, Raphael, Handte and Dohrenwend1995). It has been used in psychiatric samples as well (Jackson & Tessler, Reference Jackson and Tessler1984; Fichter et al. Reference Fichter, Quadflieg and Brandl1993; Ritsner et al. Reference Ritsner, Ponizovsky, Chemelevsky, Zetser, Durst and Ginath1996; Fichter & Quadflieg, Reference Fichter and Quadflieg2001).
The instrument has been applied to US ethnically diverse samples containing not only white participants, but also participants of African and Latin American descent (Vernon & Roberts, Reference Vernon and Roberts1981; Page & Cole, Reference Page and Cole1992; Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011; Wallace et al. Reference Wallace, Wallace and Rauh2003) and has also been used in Poland (Perera et al. Reference Perera, Wang, Rauh, Zhou, Stigter, Camann, Jedrychowski, Mroz and Majewska2013), Israel (Feldman et al. Reference Feldman, Rabinowitz and Ben-Yehuda1995; Ritsner et al. Reference Ritsner, Ponizovsky, Chemelevsky, Zetser, Durst and Ginath1996), and Germany (Fichter et al. Reference Fichter, Quadflieg and Brandl1993; Fichter & Quadflieg, Reference Fichter and Quadflieg2001). It has never been validated in non-Western populations. In a few studies (Roberts & Vernon, Reference Roberts and Vernon1981; Feldman et al. Reference Feldman, Rabinowitz and Ben-Yehuda1995; Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011) cut-off scores have been applied to determine ‘caseness’. Please see Table S2 for details.
DS
Kissane et al. (Reference Kissane, Wein, Love, Lee, Kee and Clarke2004) developed the self-report DS to assess existential distress in advanced cancer patients. The measure contains 24 items and five factors: loss of meaning and purpose, dysphoria, disheartenment, helplessness, and sense of failure. The measure is a multidimensional instrument used primarily as a unidimensional measure of demoralization. The 24-item self report scale has a 5-point scale of response, from 0 (never) to 4 (all the time) with a maximum score of 96. A score >30 is suggested as a cut-off for the presence of demoralization. The scale asks the patient to consider their state in the 2 weeks preceding assessment (Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004). The DS demonstrated good internal consistency in several validation studies (Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004; Mullane et al. Reference Mullane, Dooley, Tiernan and Bates2009; Mehnert et al. Reference Mehnert, Vehling, Hocker, Lehmann and Koch2011). While the instrument is dimensional, authors have applied cut-offs to establish a categorical evaluation of presence of demoralization.
In the preliminary validation study (Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004), ‘loss of meaning and purpose’ was found to correlate strongly with the Beck Hopelessness Scale (Beck et al. Reference Beck, Weissman, Lester and Trexler1974), and with the desire for hastened death as measured by the Schedule of Attitudes towards Hastened Death (Rosenfeld et al. Reference Rosenfeld, Breitbart, Galietta, Kaim, Funeste-Esch, Pessin, Nelson and Brescia2000). Dysphoria, factor 2, strongly correlated with the Beck Depression Inventory – II (BDI-II; Dozois et al. Reference Dozois, Dobson and Ahnberg1998) and moderately correlated with the Patient Health Questionnaire (PHQ; Kroenke et al. Reference Kroenke, Spitzer and Williams2001). The third factor, disheartenment, correlated highly with the McGill Quality of Life Questionnaire (McGill QOL; Cohen et al. Reference Cohen, Mount, Strobel and Bui1995). Factor 4, helplessness, also correlated well with the PHQ, while sense of failure, factor 5, was correlated moderately with the McGill QOL. The total DS score demonstrated a statistically significant correlation with all scales used to validate the concurrent validity of individual scale factors. The DS has been validated in several different countries in advanced cancer patient samples and palliative settings, including Ireland (Mullane et al. Reference Mullane, Dooley, Tiernan and Bates2009), Germany (Mehnert et al. Reference Mehnert, Vehling, Hocker, Lehmann and Koch2011), Taiwan (Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012) and Australia (Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004), where the measure was developed. Details of DS studies are listed in Table S3.
Several peculiarities emerge in all validation studies. Different cut-off scores have been used to create ‘demoralized’ and ‘non-demoralized’ categories. A score >30 has been used to identify demoralized cases in some studies including the preliminary one (Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004; Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012) while others have used the sample mean (Mullane et al. Reference Mullane, Dooley, Tiernan and Bates2009) or both (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2011). Cross-tabulation frequency methods were used to establish divergent validity from PHQ and BDI measures (applied to determine depression diagnoses), a method which is generally considered weak evidence and has been questioned (Mullane et al. Reference Mullane, Dooley, Tiernan and Bates2009). Indeed χ2 analyses reveal that divergent validity of the DS from the PHQ is not statistically supported (Mullane et al. Reference Mullane, Dooley, Tiernan and Bates2009; Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012). Moreover, the PHQ and BDI-II were used to confirm both divergent validity of the categorical DS diagnosis and concurrent validity of individual DS factors (disheartenment and dysphoria) as well as the concurrent validity of the DS as dimensional measure (total score) through use of correlational analyses.
SIS
The SIS is a measure developed by Cockram et al. (Reference Cockram, Doros and de Figueiredo2009) whose aim is to measure what is thought by the authors to be the clinical hallmark feature of demoralization. It is a 12-item self-report unidimensional questionnaire which asks subjects to consider the week preceding the day of assessment. The SIS demonstrates high internal consistency with a reliability coefficient of 0.90. The authors confirmed statistically significant positive correlations between several Brief COPE subscales (denial, behavioral disengagement, self-blame) (Carver, Reference Carver1997) and the SIS scale. The authors underline the limitations of this preliminary study of a cancer patient sample, mainly the homogeneity of the study group, the lack of validation with other demoralization scales and diagnostic criteria, and unknown levels of perceived stress and social support in the sample (Cockram et al. Reference Cockram, Doros and de Figueiredo2009). In a subsequent study, subjective incompetence and depression were found to correlate negatively when both perceived stress was low and social support was high, while they were found to converge when perceived stress and social support were both low or both high (Cockram et al. Reference Cockram, Doros and de Figueiredo2010). The questionnaire has been used in only two studies thus far including the preliminary validation (see Table S4).
Structured Interview for the DCPR
The Structured Interview for the DCPR (Mangelli et al. Reference Mangelli, Rafanelli, Porcelli and Fava2007) contains 58 questions with a ‘yes/no’ response. The primary aim of the DCPR is to provide a conceptual framework and assessment strategy for psychosomatic syndromes commonly encountered in the medical setting (Sirri & Fava, Reference Sirri and Fava2013). The interview identifies 12 psychosomatic syndromes including demoralization. The authors base their demoralization operationalization on Schmale & Engel's giving up–given up complex (Schmale & Engel, Reference Schmale and Engel1967) and Frank's (Reference Frank1973) demoralization syndrome as detailed in Table S1. All three criteria are required to receive a diagnosis of demoralization. The DCPR operationalization of demoralization is the first to explicitly specify its duration (at least 1 month) and the chronology of symptoms to distinguish the syndrome from similar psychiatric disorders (Mangelli et al. Reference Mangelli, Fava, Grandi, Grassi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2005).
The structured interview has demonstrated high inter-rater reliability and Cohen's kappa values ranging from 0.69 to 0.97 for the 12 syndromes. Cohen's kappa for demoralization was found to be 0.90 (Galeazzi et al. Reference Galeazzi, Ferrari, Mackinnon and Rigatelli2004). The DCPR interview has been validated and applied in the Italian context in numerous studies across varying medical diagnoses (see Table S5) with the exclusion of one study (Chaturvedi & Goswami, Reference Chaturvedi and Goswami2012). A multitude of validation studies have focused on establishing divergent validity from the Diagnostic and Statistical Manual for Psychiatric Disorders – IV (DSM-IV; APA, 1994) using the Structured Clinical Interview for DSM disorders (Spitzer et al. Reference Spitzer, Williams, Gibbon and First1992), finding evidence for incremental clinical utility in the psychological assessment of medical patients (Porcelli et al. Reference Porcelli, De Carne and Fava2000, Reference Porcelli, Bellomo, Quartesan, Altamura, Iuso, Ciannameo, Piselli and Elisei2009; Grandi et al. Reference Grandi, Fabbri, Tossani, Mangelli, Branzi and Mangelli2001; Rafanelli et al. Reference Rafanelli, Roncuzzi, Finos, Tossani, Tomba, Mangelli, Urbinati, Pinelli and Fava2003, Reference Rafanelli, Roncuzzi, Milaneschi, Tomba, Colistro, Pancaldi and Di Pasquale2005, Reference Rafanelli, Milaneschi, Roncuzzi and Pancaldi2010; Sonino et al. Reference Sonino, Navarrini, Ruini, Ottolini, Paoletta, Fallo, Boscaro and Fava2004, Reference Sonino, Fallo and Fava2006, Reference Sonino, Tomba, Genesia, Bertello, Mulatero, Veglio, Fava and Fallo2011; Grassi et al. Reference Grassi, Sabato, Rossi, Biancosino and Marmai2005, Reference Grassi, Mangelli, Fava, Grandi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2007; Mangelli et al. Reference Mangelli, Fava, Grandi, Grassi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2005, Reference Mangelli, Semprini, Sirri, Fava and Sonino2006; Ottolini et al. Reference Ottolini, Modena and Rigatelli2005; Picardi et al. Reference Picardi, Pasquini, Abeni, Fassone, Mazzotti and Fava2005, Reference Picardi, Porcelli, Pasquini, Fassone, Mazzotti, Lega, Ramieri, Sagoni, Abeni, Tiago and Fava2006; Tossani et al. Reference Tossani, Ricci Garotti and Cosci2013). One study has validated the DCPR with the International Classification of Diseases (Sartorius et al. Reference Sartorius, Kaelber, Cooper, Roper, Rae, Gulbinat, Ustün and Regier1993) in a sample of consultation liaison psychiatry patients (Galeazzi et al. Reference Galeazzi, Ferrari, Mackinnon and Rigatelli2004).
Characterization and content overlap
One question emerges in the review of available validated demoralization instruments. How do the instruments differ and how are they similar? First, the instruments differ in the time reference of the assessment. The PERI-D asks participants to consider the preceding year, the DS the preceding 2 weeks, the SIS the preceding week. The DCPR instead requires the presence of symptoms for at least 1 month duration. Second, the instruments differ in structure and type of assessment. The DCPR is a clinician-administered interview while the PERI-D, DS, and SIS are self-report questionnaires. While the PERI-D and DS are multi-dimensional scales containing nine and five factors, respectively, the SIS is a unidimensional scale. However, all three of these measures yield a total score. Despite the differences present between the instruments, there is substantial overlap in content and characterization of the demoralization syndrome (see Table S1).
Subjective incompetence remains a common factor among all instruments. It is presented as a sense of failure and/or inability to cope in both the DS and in the DCPR demoralization criteria and as low self-esteem in the PERI-D. Helplessness and hopelessness are common to most instruments, i.e. the PERI-D, the DCPR, and the DS. Psychological distress is present in two measures; in the PERI-D as sadness and anxiety items and in the DS as dysphoria and disheartenment factor items. Only the DS contains an existential component, that is, loss of meaning and loss of purpose of one's life. It is very closely associated with the common loss of mastery and independence that the severely physically ill experience (Clarke & Kissane, Reference Clarke and Kissane2002).
Demoralization prevalence
One of the main types of data present in the literature on demoralization is prevalence of the syndrome in the study samples. The prevalence of demoralization depends on the instrument used and the type of population assessed. First, we will discuss prevalence rates found in community samples and healthy control participants. These data concern the DCPR and PERI-D studies as no SIS and DS studies have investigated the prevalence of demoralization in non-medical populations. Second, we will discuss the prevalence rates of demoralization in medical samples which were available for studies using the DCPR, the DS and the PERI-D.
Non-medical settings
Few studies have investigated presence of demoralization in non-medical settings. In community samples, demoralization as defined by the PERI-D appears particularly prevalent with 20–30% of the sample reporting demoralization symptoms (Vernon & Roberts, Reference Vernon and Roberts1981; Feldman et al. Reference Feldman, Rabinowitz and Ben-Yehuda1995; Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011). Demoralization in healthy controls evaluated with the DCPR appears to be relatively rare. DCPR studies report a prevalence of 2–5% in healthy participants (Sonino et al. Reference Sonino, Ruini, Navarrini, Ottolini, Sirri, Paoletta, Fallo, Boscaro and Fava2007; Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008; Tomba et al. Reference Tomba, Rafanelli, Grandi, Guidi and Fava2012) and a prevalence rate of 3% in a community sample (Mangelli et al. Reference Mangelli, Semprini, Sirri, Fava and Sonino2006).
Medical settings
Demoralization as defined by the DCPR emerged as particularly prevalent in the medical context with roughly one third or more of patients meeting criteria across medical diagnoses including: cardiac illness (Ottolini et al. Reference Ottolini, Modena and Rigatelli2005; Rafanelli et al. Reference Rafanelli, Milaneschi and Roncuzzi2009; Porcelli et al. Reference Porcelli, Laera, Mastrangelo and Di Masi2012; Sirri et al. Reference Sirri, Fava, Guidi, Porcelli, Rafanelli, Bellomo, Grandi, Grassi, Pasquini, Picardi, Quartesan, Rigatelli and Sonino2012; Guidi et al. Reference Guidi, Rafanelli, Roncuzzi, Sirri and Fava2013), cardiac transplantation (Grandi et al. Reference Grandi, Fabbri, Tossani, Mangelli, Branzi and Mangelli2001, Reference Grandi, Sirri, Tossani and Fava2011; Sirri et al. Reference Sirri, Potena, Masetti, Tossani, Magelli and Grandi2010), essential hypertension (Rafanelli et al. Reference Rafanelli, Offidani, Gostoli and Roncuzzi2012), endocrine diseases (Sonino et al. Reference Sonino, Navarrini, Ruini, Ottolini, Paoletta, Fallo, Boscaro and Fava2004, Reference Sonino, Ruini, Navarrini, Ottolini, Sirri, Paoletta, Fallo, Boscaro and Fava2007), primary aldosteronism (Sonino et al. Reference Sonino, Fallo and Fava2006, Reference Sonino, Tomba, Genesia, Bertello, Mulatero, Veglio, Fava and Fallo2011), oncological diseases (Grassi et al. Reference Grassi, Rossi, Sabato, Cruciani and Zambelli2004, Reference Grassi, Sabato, Rossi, Biancosino and Marmai2005), primary care (Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008), consultation liaison psychiatry patients (Galeazzi et al. Reference Galeazzi, Ferrari, Mackinnon and Rigatelli2004; Porcelli et al. Reference Porcelli, Bellomo, Quartesan, Altamura, Iuso, Ciannameo, Piselli and Elisei2009), medical outpatient samples with a wide variety of medical diagnoses (Mangelli et al. Reference Mangelli, Fava, Grandi, Grassi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2005; Grassi et al. Reference Grassi, Mangelli, Fava, Grandi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2007; Guidi et al. Reference Guidi, Fava, Picardi, Porcelli, Bellomo, Grandi, Grassi, Pasquini, Quartesan, Rafanelli, Rigatelli and Sonino2011), and cyclothymic disorder (Tomba et al. Reference Tomba, Rafanelli, Grandi, Guidi and Fava2012). Patients with vasovagal syncope and medically unexplained syncope also report relatively high rates (around 20%) (Rafanelli et al. Reference Rafanelli, Gostoli, Roncuzzi and Sassone2013).
The highest prevalence has been reported in psychiatric patients with roughly half of the samples suffering from the syndrome (Abbate-Daga et al. Reference Abbate-Daga, Delsedime, Nicotra, Giovannone, Marola, Amianto and Fassino2013; Tossani et al. Reference Tossani, Ricci Garotti and Cosci2013). DCPR studies have been able to ascertain a higher presence of demoralization in medical (Sonino et al. Reference Sonino, Ruini, Navarrini, Ottolini, Sirri, Paoletta, Fallo, Boscaro and Fava2007; Ferrari et al. Reference Ferrari, Monzani, Baraldi, Simoni, Prati, Forghieri, Rigatelli, Genovese and Pingani2013) and psychiatric (Tomba et al. Reference Tomba, Rafanelli, Grandi, Guidi and Fava2012) samples compared to healthy controls.
The applicability of the demoralization syndrome and the DCPR is beginning to be explored in the Indian population as well, with a preliminary study reporting 15% of a psychiatric sample suffering from the syndrome (Chaturvedi & Goswami, Reference Chaturvedi and Goswami2012). However, considering the socio-cultural differences between the cultural context in which the instrument has been developed and validated (Italy) and the Indian context, further studies are needed to validate the measure. Moreover, DCPR demoralization also seems to be stable in individuals over time. In patients assessed after coronary artery bypass surgery, prevalence of demoralization did not change significantly over the course of 6–8 years’ follow up (Rafanelli et al. Reference Rafanelli, Roncuzzi and Milaneschi2006).
Prevalence rates of demoralization using the DS varied according to the use of cut-off scores as can be seen in Table S3. When the sample mean score and s.d.s were used to distinguish cases of low, moderate and high demoralization, moderate demoralization was found to be present in 70% of cancer patients. High demoralization was found in about 15% of cancer patients (Mullane et al. Reference Mullane, Dooley, Tiernan and Bates2009; Mehnert et al. Reference Mehnert, Vehling, Hocker, Lehmann and Koch2011). Demoralization prevalence rates around 50% were reported when median scores or a score >30 were used as cut-offs (Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004; Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012).
Link & Dohrenwend (Reference Link, Dohrenwend, Dohrenwend, Dohrenwend, Schwartz-Gould, Link, Neugebauer and Wunsch-Hitz1980) reported a median prevalence in 14 local community studies of around 24.6%. From the PERI-D studies included for review, a prevalence between roughly 20–30% also emerged in community samples (Roberts & Vernon, Reference Roberts and Vernon1981) including a sample of inner-city low-income mothers (Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011), while in a military outpatient clinic 26.4% of males and 16.3% of females reported being demoralized.
Differential diagnosis
Demoralization and depression
DCPR and DS studies have focused on differentiating demoralization from depression. Presence of the DCPR demoralization syndrome did not necessarily coincide with diagnoses of MDD in an extensive medical patient sample with varying diagnoses (Guidi et al. Reference Guidi, Fava, Picardi, Porcelli, Bellomo, Grandi, Grassi, Pasquini, Quartesan, Rafanelli, Rigatelli and Sonino2011), in medical outpatients (Mangelli et al. Reference Mangelli, Fava, Grandi, Grassi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2005), in inpatients (Galeazzi et al. Reference Galeazzi, Ferrari, Mackinnon and Rigatelli2004), in the context of primary care (Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008), cardiac transplantation (Grandi et al. Reference Grandi, Fabbri, Tossani, Mangelli, Branzi and Mangelli2001, Reference Grandi, Sirri, Tossani and Fava2011; Sirri et al. Reference Sirri, Potena, Masetti, Tossani, Magelli and Grandi2010), endocrine conditions (Sonino et al. Reference Sonino, Navarrini, Ruini, Ottolini, Paoletta, Fallo, Boscaro and Fava2004, Reference Sonino, Ruini, Navarrini, Ottolini, Sirri, Paoletta, Fallo, Boscaro and Fava2007), primary aldosteronism (Sonino et al. Reference Sonino, Fallo and Fava2006, Reference Sonino, Tomba, Genesia, Bertello, Mulatero, Veglio, Fava and Fallo2011), myocardial infarction (Ottolini et al. Reference Ottolini, Modena and Rigatelli2005), hypertension (Sonino et al. Reference Sonino, Tomba, Genesia, Bertello, Mulatero, Veglio, Fava and Fallo2011; Rafanelli et al. Reference Rafanelli, Offidani, Gostoli and Roncuzzi2012), congestive heart failure (Rafanelli et al. Reference Rafanelli, Milaneschi and Roncuzzi2009), acute heart disease (Rafanelli et al. Reference Rafanelli, Roncuzzi, Milaneschi, Tomba, Colistro, Pancaldi and Di Pasquale2005), cardiac rehabilitation (Rafanelli et al. Reference Rafanelli, Roncuzzi, Finos, Tossani, Tomba, Mangelli, Urbinati, Pinelli and Fava2003), functional gastrointestinal disorders (Porcelli et al. Reference Porcelli, De Carne and Fava2000), dermatology (Picardi et al. Reference Picardi, Pasquini, Abeni, Fassone, Mazzotti and Fava2005) and oncology (Grassi et al. Reference Grassi, Sabato, Rossi, Biancosino and Marmai2005). The aforementioned studies documented cases of demoralization without depression and of depression without demoralization, indicating that the psychological states are different clinical phenomena and are independent. Of note, DCPR demoralization emerged as more prevalent than major depression in all studies which assessed both states further indicating their differentiability. Only two studies constitute exceptions (Rafanelli et al. Reference Rafanelli, Roncuzzi, Milaneschi, Tomba, Colistro, Pancaldi and Di Pasquale2005; Sonino et al. Reference Sonino, Tomba, Genesia, Bertello, Mulatero, Veglio, Fava and Fallo2011), but the reasons for the discrepancy appear to be unclear.
Demoralization as defined by the DCPR was found to be distinguishable from minor depression as well in patients with cardiovascular diseases (Rafanelli et al. Reference Rafanelli, Roncuzzi, Finos, Tossani, Tomba, Mangelli, Urbinati, Pinelli and Fava2003, Reference Rafanelli, Roncuzzi and Milaneschi2006, Reference Rafanelli, Milaneschi and Roncuzzi2009, Reference Rafanelli, Milaneschi, Roncuzzi and Pancaldi2010) and hypertensive patients (Rafanelli et al. Reference Rafanelli, Offidani, Gostoli and Roncuzzi2012). Dysthymia and demoralization could also be differentiated in two studies (Rafanelli et al. Reference Rafanelli, Milaneschi, Roncuzzi and Pancaldi2010, Reference Rafanelli, Offidani, Gostoli and Roncuzzi2012).
The DS was also used to identify cases of demoralization in absence of major depression in several studies assessing advanced cancer patients (Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004; Mullane et al. Reference Mullane, Dooley, Tiernan and Bates2009; Mehnert et al. Reference Mehnert, Vehling, Hocker, Lehmann and Koch2011; Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012) with varying prevalence depending on the cut-off used (see Table S3 for reported percentages).
Most PERI-D studies and the validation study of the SIS contained little to no concomitant assessment of DSM-defined psychopathology, thereby haltering the possibility of validating the demoralization syndrome and divergent validity with psychiatric categorizations of psychological distress such as minor depression, dysthymia, major depression and adjustment disorders.
Demoralization and adjustment disorder
Jacobsen et al. (Reference Jacobsen, Maytal and Stern2007) argued that demoralization could be distinguishable from an adjustment disorder considering the quantitative differences rather than qualitative ones, with the two conditions being different in severity. The substantial overlap of adjustment disorder diagnoses with other psychiatric categorizations, especially in the medical setting, has contributed significantly to critiques on its questionable clinical utility (Semprini et al. Reference Semprini, Fava and Sonino2010).
DCPR demoralization syndrome is more prevalent than adjustment disorders in both psychiatric and medical outpatient samples (Mangelli et al. Reference Mangelli, Fava, Grandi, Grassi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2005; Guidi et al. Reference Guidi, Fava, Picardi, Porcelli, Bellomo, Grandi, Grassi, Pasquini, Quartesan, Rafanelli, Rigatelli and Sonino2011; Fava et al. Reference Fava, Guidi, Porcelli, Rafanelli, Bellomo, Grandi, Grassi, Mangelli, Pasquini, Picardi, Quartesan, Rigatelli and Sonino2012a), dermatological inpatients (Picardi et al. Reference Picardi, Pasquini, Abeni, Fassone, Mazzotti and Fava2005, Reference Picardi, Porcelli, Pasquini, Fassone, Mazzotti, Lega, Ramieri, Sagoni, Abeni, Tiago and Fava2006), cardiac disease and heart transplantation (Sirri et al. Reference Sirri, Potena, Masetti, Tossani, Magelli and Grandi2010, Reference Sirri, Fava, Guidi, Porcelli, Rafanelli, Bellomo, Grandi, Grassi, Pasquini, Picardi, Quartesan, Rigatelli and Sonino2012), consultation liaison psychiatry (Porcelli et al. Reference Porcelli, Bellomo, Quartesan, Altamura, Iuso, Ciannameo, Piselli and Elisei2009) and endocrine disorder (Sonino et al. Reference Sonino, Navarrini, Ruini, Ottolini, Paoletta, Fallo, Boscaro and Fava2004, Reference Sonino, Ruini, Navarrini, Ottolini, Sirri, Paoletta, Fallo, Boscaro and Fava2007) patients. Moreover, almost identical prevalence rates of demoralization and adjustment disorder have been reported in oncological patients (Grassi et al. Reference Grassi, Sabato, Rossi, Biancosino and Marmai2005) and functional gastrointestinal disorder (FGID) patients (Porcelli et al. Reference Porcelli, De Carne and Fava2000). In a sample of medical patients with adjustment disorders, about a third was also suffering from demoralization syndrome (Grassi et al. Reference Grassi, Mangelli, Fava, Grandi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2007).
A large overlap of ‘non-specific psychological distress,’ or demoralization as measured by the PERI-D, and adjustment disorder was also reported by Marchesi & Maggini (Reference Marchesi and Maggini2007), in a cancer patient sample.
Associated features
Sociodemographic factors
Several sociodemographic factors were found to be significantly correlated with demoralization. Being female was associated with higher PERI-D scores (Page & Cole, Reference Page and Cole1992; Marchesi & Maggini, Reference Marchesi and Maggini2007; Mehnert et al. Reference Mehnert, Vehling, Hocker, Lehmann and Koch2011) and with a DCPR demoralization syndrome diagnosis (Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011; Ferrari et al. Reference Ferrari, Monzani, Baraldi, Simoni, Prati, Forghieri, Rigatelli, Genovese and Pingani2013) in several studies. Being female was associated with higher DS scores in the Vehling et al. study (Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2012) as well, although not significantly, while it was found to be a significant predictor of demoralization in a previous study (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2011). In contrast, Feldman et al. (Reference Feldman, Rabinowitz and Ben-Yehuda1995) found higher PERI-D scores in males in a military primary-care setting, although the difference in mean scores did not reach statistical significance. No gender differences in DCPR demoralization diagnoses were found in an oncology patient sample (Grassi et al. Reference Grassi, Sabato, Rossi, Biancosino and Marmai2005).
The evidence for an association between measures of demoralization and age was contradictory. Positive (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2012), negative (Page & Cole, Reference Page and Cole1992; Clarke et al. Reference Clarke, Kissane, Trauer and Smith2005; Cockram et al. Reference Cockram, Doros and de Figueiredo2009; Mehnert et al. Reference Mehnert, Vehling, Hocker, Lehmann and Koch2011; Vehling et al. Reference Vehling, Oechsle, Koch and Mehnert2013), or no associations (Grassi et al. Reference Grassi, Sabato, Rossi, Biancosino and Marmai2005; Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012) with age have been reported. However, most of the samples in these studies had a relatively high mean age of patients with most patients being middle-aged or older.
Family and social factors may play a role in demoralization. Low social support is a significant predictor of demoralization (Vehling et al. Reference Vehling, Oechsle, Koch and Mehnert2013). Demoralized medical patients report poorer family support and scarcer positive relationships compared to both their non-demoralized counterparts (Marchesi & Maggini, Reference Marchesi and Maggini2007) and to healthy controls (Lennon et al. Reference Lennon, Dohrenwend, Zautra and Marbach1990; Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011). Low social support is particularly prevalent in demoralization syndrome diagnoses in cancer patients (Grassi et al. Reference Grassi, Rossi, Sabato, Cruciani and Zambelli2004). Furthermore, living alone (Mehnert et al. Reference Mehnert, Vehling, Hocker, Lehmann and Koch2011) as well as being jobless or having a low income (Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012) was found to be significantly associated with DS-demoralization in cancer patients
Stress
An association between stress and demoralization was found in the literature. It is important to first distinguish between objective measures of stress and subjective measures which assess perceived stress. While the use of objective stress measures such as event checklists has clear advantages, their use implies a direct relationship between stressful life events and pathology, while minimizing cognitive evaluations and subjective experience. The impact of stressful life events is always in some degree determined by the subjective perception of their stressfulness (Cohen et al. Reference Cohen, Kamarck and Mermelstein1983).
Regarding objective stress, more stressful life events (Marchesi & Maggini, Reference Marchesi and Maggini2007) and more negative life changes following negative events (Lennon et al. Reference Lennon, Dohrenwend, Zautra and Marbach1990) were significantly correlated with PERI-D scores in medical patients. Elderly women with a history of suicidality in the past 5 years (suicidal attempts or ideation), found to have high DS scores, reported more important stressful life events in the prior 12 months compared to controls without recent history of suicidality (Lau et al. Reference Lau, Morse and Macfarlane2010). Patients who reported allostatic overload (Fava et al. Reference Fava, Guidi, Semprini, Tomba and Sonino2010a; Tomba & Offidani, Reference Tomba and Offidani2012), that is, a condition in which an identifiable stressor(s) exceeds an individual's ability to cope, reported significantly higher frequency of DCPR demoralization than those who did not present with such stressful characterization (Porcelli et al. Reference Porcelli, Laera, Mastrangelo and Di Masi2012).
Subjective or perceived stress related to dignity (Sautier et al. Reference Sautier, Vehling and Mehnert2014), shame and stigma (Kissane et al. Reference Kissane, Patel, Baser, Bell, Farberov, Ostroff, Li, Singh, Kraus and Shah2013) in cancer patients were found to be correlated significantly and positively with DS-demoralization scores. The role of perceived stress along with social support may be considered to better understand the convergence of demoralization with depression (Cockram et al. Reference Cockram, Doros and de Figueiredo2010).
Somatization and pain
Somatization, understood as the tendency to communicate and experience psychological distress through physical symptoms while seeking medical attention for them (Lipowski, Reference Lipowski1988), was found to be associated with demoralization in its various conceptualizations. The co-occurrence of demoralization with physical symptomatology is also suggested by the substantial overlap rates of DSM somatoform diagnoses and DCPR demoralization diagnosis. In the Picardi et al. (Reference Picardi, Porcelli, Pasquini, Fassone, Mazzotti, Lega, Ramieri, Sagoni, Abeni, Tiago and Fava2006) study of dermatological inpatients, a large overlap of somatoform diagnoses with demoralization syndrome was reported. Similar overlap of demoralization and somatoform disorders was found in gastrointestinal patients (Porcelli et al. Reference Porcelli, De Carne and Fava2000). In addition, the high prevalence of demoralization in frequent attenders of a primary-care clinic (Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008) may indicate a somatization tendency in this subset of patients. A recent cluster analysis study underlined the associations between demoralization, somatization processes, anxiety and mood disorders (Fava et al. Reference Fava, Guidi, Porcelli, Rafanelli, Bellomo, Grandi, Grassi, Mangelli, Pasquini, Picardi, Quartesan, Rigatelli and Sonino2012a).
Several findings indicate a possible relationship between demoralization and pain experience. Greater pain intensity was found to be associated with presence of DCPR demoralization syndrome (Porcelli et al. Reference Porcelli, Bellomo, Quartesan, Altamura, Iuso, Ciannameo, Piselli and Elisei2009). PERI-D demoralization has been found to be associated with phantom tooth pain (Marbach, Reference Marbach1993) and myofascial pain (Gallagher et al. Reference Gallagher, Marbach, Raphael, Handte and Dohrenwend1995). Pain events (compared to other negative events) were associated with greater negative change in patients with myofascial pain syndromes which was in turn associated with high PERI-demoralization (Lennon et al. Reference Lennon, Dohrenwend, Zautra and Marbach1990).
Other facets of painful illness may certainly be involved such as functional disability, also found to correlate with demoralization in a sample of inpatients independently of illness severity (Marchesi & Maggini, Reference Marchesi and Maggini2007). Existential factors such as loss of sense of dignity may also account partially for the association between physical problems and demoralization specifically in advanced cancer patients (Vehling & Mehnert, Reference Vehling and Mehnert2013).
Illness behavior
Illness behavior emerged in association with demoralization. DCPR demoralization syndrome was found to be associated with frequent attender behavior in a primary-care setting while controlling for other sociodemographic factors (Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008). Furthermore, demoralization was found to overlap with illness denial in consultation liaison psychiatry (Galeazzi et al. Reference Galeazzi, Ferrari, Mackinnon and Rigatelli2004). Patients with substance use disorders exhibit a substantial overlap between demoralization syndrome and illness denial (Tossani et al. Reference Tossani, Ricci Garotti and Cosci2013). A cluster characterized by demoralization and abnormal illness behaviors (including health anxiety, illness denial) was identified in a large sample of medically ill patients (Fava et al. Reference Fava, Guidi, Porcelli, Rafanelli, Bellomo, Grandi, Grassi, Mangelli, Pasquini, Picardi, Quartesan, Rigatelli and Sonino2012a). High rates of demoralization (96%) characterized a severe psychosomatic cluster (high rates of illness denial, irritable mood, health anxiety, and alexithymia) in a sample of anorexia nervosa inpatients (Abbate-Daga et al. Reference Abbate-Daga, Delsedime, Nicotra, Giovannone, Marola, Amianto and Fassino2013). In a sample of patients with temporomandibular pain and dysfunction syndrome, higher demoralization scores were related to over-reporting of children's illness even after controlling for illness attitudes (Raphael et al. Reference Raphael, Dohrenwend and Marbach1990). In cancer patients (Cockram et al. Reference Cockram, Doros and de Figueiredo2009), subjective incompetence, the clinical hallmark of demoralization, has also been found to significantly correlate with denial and behavioral disengagement as measured by the COPE scale (Carver, Reference Carver1997).
Psychological well-being
Psychological well-being (Ryff, Reference Ryff1989) represents a dimensional model which considers the various psychological dimensions which are conducive to an individual's development of optimal functioning: positive evaluation of one's self, the belief that life is purposeful and meaningful, the possession of quality relationships with others, a sense of continued growth and development, a sense of mastery over one's environment, and a sense of self-determination. Sense of autonomy, environmental mastery, positive relations, self-acceptance and purpose in life were found to be significantly worse in demoralized patients compared to non-demoralized patients in the setting of cardiac transplantation. Additionally, cases of co-morbid demoralization and depression reported significantly lower autonomy, positive relations with others, and self-acceptance than patients who were only depressed (Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011). Identified by cluster analysis, a group of hypertensive patients was found to be characterized by worse psychological well-being scores and significantly higher rates of demoralization, minor depression and generalized anxiety disorder (Rafanelli et al. Reference Rafanelli, Offidani, Gostoli and Roncuzzi2012). These findings underline that among demoralized patients, there is also a lack of positive functioning characteristics, which is not always the flip-side of the presence of psychological distress (Ryff et al. Reference Ryff, Love, Urry, Muller, Rosenkranz, Friedman, Davidson and Singer2006).
A poor sense of coherence (Antonovsky, Reference Antonovsky1987) in gynecological cancer was also found to correlate with higher DS scores (Boscaglia & Clarke, Reference Boscaglia and Clarke2007), Similarly, a lack of global meaning, which comprises both a sense of personal coherence and of purpose, was found to predict DS scores (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2011).
Demoralization and health outcomes
Adverse health outcomes have also been reported in association with DCPR demoralization syndrome, specifically in cardiac conditions. In a follow-up study of myocardial infarction survivors, patients with joint presence of dysthymia and demoralization were found to be at risk 3.67 times more than patients without dysthymia for developing cardiac events, such as cardiac death or re-hospitalization (Rafanelli et al. Reference Rafanelli, Milaneschi, Roncuzzi and Pancaldi2010). Demoralization was found to be a prodromal symptom of cardiac events, indicating the possibility that a poor psychological state may be indicative of vulnerability to coronary artery disease (Ottolini et al. Reference Ottolini, Modena and Rigatelli2005; Rafanelli et al. Reference Rafanelli, Roncuzzi, Milaneschi, Tomba, Colistro, Pancaldi and Di Pasquale2005). In cardiac transplant patients with concomitant depression and demoralization, acute rejection episodes were more frequent than in patients with demoralization in absence of depression, although this result may be due to lower pharmacological compliance (Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011).
Altered immune function was found to be associated with PERI-demoralization. Specifically, concanavalin A and pokeweed mitogen responses (measures of decreased lymphocyte activity) in patients with temporo-mandibular pain and dysfunction syndrome were decreased in relation to the level of demoralization. Interestingly, depression scores (Hamilton, Reference Hamilton1967) did not seem to be associated with altered mitogen responses (Marbach et al. Reference Marbach, Schleifer and Keller1990). However, the aforementioned studies had small sample sizes, therefore results must be interpreted with caution.
High maternal PERI-D scores were associated with offspring's adverse health outcomes. More specifically, maternal demoralization scores were found to correlate significantly with both persistent and transient wheeze, significant predictors of clinical childhood asthma, in children of inner-city low-income mothers (Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011), as well as with adverse neurobehavioral outcomes in offspring exposed to high levels of air pollutants (Perera et al. Reference Perera, Wang, Rauh, Zhou, Stigter, Camann, Jedrychowski, Mroz and Majewska2013). An indirect association between body mass index and both maternal PERI-D scores and economic deprivation emerged in low-income mothers exposed to high community stress. However, the relationship between stress, poverty, dietary behaviors and psychological distress is complex requiring further investigation (Wallace et al. Reference Wallace, Wallace and Rauh2003).
As one would expect, poorer quality of life and functioning was found to be associated with demoralization in medically ill patients. Quality of life negatively correlated with DS scores in cancer patients (Kissane et al. Reference Kissane, Wein, Love, Lee, Kee and Clarke2004; Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012). Similarly, cancer patients with DCPR demoralization syndrome fared worse on quality of life measures than other psychosomatic DCPR syndrome groups, reporting more physical symptoms, poorer leisure activity, poorer adjustment and poorer social support (Grassi, et al. Reference Grassi, Rossi, Sabato, Cruciani and Zambelli2004). Demoralized cardiac transplant patients and demoralized consultation liaison psychiatry (CLP) inpatients also reported significantly worse quality of life and poorer psychosocial functioning than their non-demoralized counterparts (Porcelli et al. Reference Porcelli, Bellomo, Quartesan, Altamura, Iuso, Ciannameo, Piselli and Elisei2009; Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011). In CLP patients, DCPR demoralization was found to be a better predictor of impaired psychosocial functioning than any DSM diagnosis, even while controlling for medical and demographic variables (Porcelli et al. Reference Porcelli, Bellomo, Quartesan, Altamura, Iuso, Ciannameo, Piselli and Elisei2009).
Poorer quality of life, in terms of number of physical problems, predicted DS scores in cancer patients (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2012, Reference Vehling, Oechsle, Koch and Mehnert2013) which in turn were correlated with complaints of fatigue, mobility constraints, breathing problems, constipation, concentration or memory problems (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2012). Furthermore, demoralized cancer patients were more likely to report physical problems than non-demoralized cancer patients (Mehnert et al. Reference Mehnert, Vehling, Hocker, Lehmann and Koch2011).
Clinical utility of the instruments
PERI-D
The PERI-D may be useful to screen for depressive symptomatology in community samples as indicated by several studies (Roberts & Vernon, Reference Roberts and Vernon1981; Vernon & Roberts, Reference Vernon and Roberts1981; Marbach et al. Reference Marbach, Schleifer and Keller1990; Marchesi & Maggini, Reference Marchesi and Maggini2007). Additionally, the instrument has demonstrated the ability to distinguish psychiatric cases from non-cases (Fichter et al. Reference Fichter, Quadflieg and Brandl1993; Ritsner et al. Reference Ritsner, Ponizovsky, Chemelevsky, Zetser, Durst and Ginath1996) and to differentiate groups of patients with various pain syndromes (Lennon et al. Reference Lennon, Dohrenwend, Zautra and Marbach1990; Marbach et al. Reference Marbach, Schleifer and Keller1990; Marbach, Reference Marbach1993; Gallagher et al. Reference Gallagher, Marbach, Raphael, Handte and Dohrenwend1995). However, it does not seem to be sensitive to changes over time (Lennon et al. Reference Lennon, Dohrenwend, Zautra and Marbach1990; Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011) and does not capture the severity of distress symptoms (Ritsner et al. Reference Ritsner, Ponizovsky, Chemelevsky, Zetser, Durst and Ginath1996; Marchesi & Maggini, Reference Marchesi and Maggini2007).
DS
The DS appears to be sensitive to suicidality (Catanese et al. Reference Catanese, John, Di Battista and Clarke2009; Lau et al. Reference Lau, Morse and Macfarlane2010). The instrument has also been found to be associated with illness-related variables such as cancer type and treatment strategies of anti-cancer treatments in one study (Lee et al. Reference Lee, Fang, Yang, Liu, Leu, Wang and Chen2012), but not to stage of cancer and illness duration, type of treatment and cancer site in another sample (Boscaglia & Clarke, Reference Boscaglia and Clarke2007; Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2012). Furthermore, in one study the DS did not capture changes over time (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2012). However, a strong relationship between DS demoralization, physical problems and loss of global meaning in advanced cancer patients may indicate its utility in capturing illness-related distress related to such symptoms (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2012). Sensitivity to treatment response of the DS has been demonstrated in patients presenting to the emergency room with suicidal intentions (Catanese et al. Reference Catanese, John, Di Battista and Clarke2009).
SIS
The SIS requires further validation, but preliminary data suggests that it may be useful to assess medical patients for possible abnormal illness behaviors or attitudes, as SIS scores correlated significantly with denial and behavioral disengagement (Cockram et al. Reference Cockram, Doros and de Figueiredo2009).
Structured Interview for the DCPR
The DCPR interview appears to be a sensitive tool with which to assess the demoralization syndrome in the clinical context. Studies have been able to ascertain a higher presence of demoralization in medical and psychiatric samples compared to healthy controls (Sonino et al. Reference Sonino, Ruini, Navarrini, Ottolini, Sirri, Paoletta, Fallo, Boscaro and Fava2007, Reference Sonino, Tomba, Genesia, Bertello, Mulatero, Veglio, Fava and Fallo2011; Tomba et al. Reference Tomba, Rafanelli, Grandi, Guidi and Fava2012; Ferrari et al. Reference Ferrari, Monzani, Baraldi, Simoni, Prati, Forghieri, Rigatelli, Genovese and Pingani2013) and compared to the general population (Mangelli et al. Reference Mangelli, Semprini, Sirri, Fava and Sonino2006) which present a much lower prevalence. Additionally, DCPR demoralization was found to differentiate frequent attenders of primary care from controls (Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008).
Sensitivity to changes over time has yet to be explored across varying diagnoses. Nonetheless, prevalence rates did not differ greatly between baseline and follow-up in coronary artery bypass surgery patients (Rafanelli et al. Reference Rafanelli, Roncuzzi and Milaneschi2006) and coronary heart disease inpatients (Rafanelli et al. Reference Rafanelli, Roncuzzi, Milaneschi, Tomba, Colistro, Pancaldi and Di Pasquale2005, Reference Rafanelli, Milaneschi, Roncuzzi and Pancaldi2010). The DCPR demoralization criteria show sensitivity in discriminating presence of psychological distress specifically in the form of allostatic overload syndrome (Fava et al. Reference Fava, Guidi, Semprini, Tomba and Sonino2010a). The condition presents an identifiable stressor or stressors that exceed the individual's ability to cope which precipitates psychosomatic or psychopathological symptomatology (Porcelli et al. Reference Porcelli, Laera, Mastrangelo and Di Masi2012).
Discussion
Differences between instrument use, prevalence rates, and associated features
The assessment instruments have been used for different purposes and populations. The differing prevalence rates differ greatly across instruments which may be due to the different definitions of demoralization, participant characteristics, and methods of assessment. While the instruments overlap in content as previously discussed, they may be capturing slightly different psychological states due to their variations in definitions, format and time reference. Several considerations must be made to determine whether the instruments constitute valid methods for the assessment of demoralization understood as a distinct condition.
Interestingly, the PERI-D seems to be a useful tool for assessing distress in patients with medical conditions characterized by chronic pain (Lennon et al. Reference Lennon, Dohrenwend, Zautra and Marbach1990; Marbach et al. Reference Marbach, Schleifer and Keller1990; Marbach, Reference Marbach1993; Gallagher et al. Reference Gallagher, Marbach, Raphael, Handte and Dohrenwend1995). It is highly present in association with chronic distress strongly correlated with household economic deprivation (Wallace et al. 2003) which may account for its correlation with adverse health outcomes in offspring of mothers in moderate to low socio-economic stressful conditions (Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011; Perera et al. Reference Perera, Wang, Rauh, Zhou, Stigter, Camann, Jedrychowski, Mroz and Majewska2013). The high rates of demoralization (20–30%) in community samples (Roberts & Vernon, Reference Roberts and Vernon1981; Reyes et al. Reference Reyes, Perzanowski, Whyatt, Kelvin, Rundle, Diaz, Hoepner, Perera, Rauh and Miller2011) may indicate that the PERI-D captures non-specific psychological distress associated with living in stressful conditions.
The usefulness of the PERI-D in screening community samples for depressive symptomatology may underscore the lack of discriminant validity of PERI-D demoralization from depression. Its association with general psychopathology (Fichter & Quadflieg, Reference Fichter and Quadflieg2001) and perceived lack of control (Jackson & Tessler, Reference Jackson and Tessler1984) in psychiatric patients suggest it does indeed capture general psychological distress associated with chronic psychopathology (Kohn, Reference Kohn2013). Indeed the PERI-D has been questioned as a valid measure of demoralization by de Figueiredo (Reference de Figueiredo1993) and Marchesi & Maggini (Reference Marchesi and Maggini2007) for its lack of subjective incompetence assessment, despite the developers’ drawing of parallelisms between their scale and Frank's construct. Indeed The PERI-D considers the past year, a time-frame which is scarcely useful in the clinical context. A clear strength of the PERI-D is its validation across ethnically diverse samples.
The data that emerged from the review of studies that applied the DS indicate that the scale may be capturing a specific type of existential psychological distress related to end of life and distress associated with physical suffering associated with terminal and life-threatening illness. The measure has been used primarily to assess advanced cancer samples. This may account for the high prevalence rates reported which are also the highest among all the reviewed studies assessing medical patients (see Table S3).
Furthermore, the evidence of discriminant validity from depression may not be entirely reliable as the use of a dimensional scale to create diagnostic categorizations presents methodological inadequacies. Additionally, the cut-off scores vary across studies, creating confusion and difficulties in interpretation and comparisons of results, specifically of prevalence rates. The measure's sensitivity to suicidality (Catanese et al. Reference Catanese, John, Di Battista and Clarke2009; Lau et al. Reference Lau, Morse and Macfarlane2010) may indicate that the measure's utility goes beyond capturing end of life distress and may prove to be useful in psychiatric populations and for screening suicidality. On the other hand, this may indicate that DS demoralization greatly overlaps with depression. Indeed DS scores have been found to correlate with depression scores (Vehling et al. Reference Vehling, Lehmann, Oechsle, Bokemeyer, Krüll, Koch and Mehnert2011). While these findings may underline known associations between hopelessness, depression and suicidality (Chioqueta & Stiles, Reference Chioqueta and Stiles2003; Stewart et al. Reference Stewart, Kennard, Lee, Mayes, Hughes and Emslie2005), longitudinal associations between hopelessness, depressive symptoms, and suicidality are inconsistent (Shahar et al. Reference Shahar, Bareket, Rudd and Joiner2006). Demoralization, suicidality, and depression may be correlated but distinct psychological states.
The majority of the data from DCPR studies indicate that demoralization, as defined by the instrument, is a relatively rare occurrence in healthy participants who do not have medical illnesses (Sonino et al. Reference Sonino, Ruini, Navarrini, Ottolini, Sirri, Paoletta, Fallo, Boscaro and Fava2007; Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008; Tomba et al. Reference Tomba, Rafanelli, Grandi, Guidi and Fava2012) and in community samples (Mangelli et al. Reference Mangelli, Semprini, Sirri, Fava and Sonino2006). It may be that DCPR demoralization criteria captures a specific psychological state associated with the experience of illness (see prevalence rates in Table S5) as also suggested by associations with somatization (Porcelli et al. Reference Porcelli, De Carne and Fava2000; Picardi et al. Reference Picardi, Porcelli, Pasquini, Fassone, Mazzotti, Lega, Ramieri, Sagoni, Abeni, Tiago and Fava2006; Fava et al. Reference Fava, Guidi, Porcelli, Rafanelli, Bellomo, Grandi, Grassi, Mangelli, Pasquini, Picardi, Quartesan, Rigatelli and Sonino2012a; Abbate-Daga et al. Reference Abbate-Daga, Delsedime, Nicotra, Giovannone, Marola, Amianto and Fassino2013; Guidi et al. Reference Guidi, Rafanelli, Roncuzzi, Sirri and Fava2013), allostatic overload (Porcelli et al. Reference Porcelli, Laera, Mastrangelo and Di Masi2012) and abnormal illness behavior (Galeazzi et al. Reference Galeazzi, Ferrari, Mackinnon and Rigatelli2004; Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008; Fava et al. Reference Fava, Guidi, Porcelli, Rafanelli, Bellomo, Grandi, Grassi, Mangelli, Pasquini, Picardi, Quartesan, Rigatelli and Sonino2012a; Abbate-Daga et al. Reference Abbate-Daga, Delsedime, Nicotra, Giovannone, Marola, Amianto and Fassino2013; Tossani et al. Reference Tossani, Ricci Garotti and Cosci2013) and quality of life (Grassi et al. Reference Grassi, Rossi, Sabato, Cruciani and Zambelli2004; Mangelli et al. Reference Mangelli, Semprini, Sirri, Fava and Sonino2006; Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011).
A large percentage of illnesses present in the DCPR samples were of a chronic nature and non life-threatening in the immediate future (i.e. functional gastrointestinal disorders, hypertension, psychiatric disorders, endocrine disorders) indicating that DCPR demoralization may be regarded as a manifestation of dealing with stress of a chronic nature, rather than a reaction to acute or life-threatening stressors. Indeed there are no significant differences in the prevalence of demoralization across different medical settings, such as oncology and gastroenterology (Mangelli et al. Reference Mangelli, Fava, Grandi, Grassi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2005). The use of DCPR as an integrative tool for DSM criteria is a strength of the instrument.
The SIS (Cockram et al. Reference Cockram, Doros and de Figueiredo2009) has not been used to gather information on prevalence or differentiability from major depression or other psychiatric disorders. Further studies may elucidate such relationships and provide such information. The possible relationship between demoralization, understood as subjective incompetence and distress, and coping deficits (Cockram et al. Reference Cockram, Doros and de Figueiredo2009) may have extremely useful implications in the medical setting.
One consistent result emerges across instrument type and across studies. Demoralization is associated with stress experiences whether acute, severe or chronic. Furthermore, in the medical setting, demoralization emerges as a psychological state associated with adverse health outcomes.
Conceptual synthesis
There have been various definitions and conceptualizations of demoralization. Demoralization has been seen as a normal reaction to adversity (Jacobsen et al. Reference Jacobsen, Maytal and Stern2007). Slavney (Reference Slavney1999) and Parker (Reference Parker2004) had proposed to consider demoralization as a normal dysphoric condition, akin to grief, in which, upon removal of the stressor and improvement of psychosocial protective factors (i.e. family support) improvement of the condition is observed. More importantly, according to those authors, while the social and functional impairment or excessive reactive distress in adjustment disorders is defined as unjustified by the nature of the circumstances, in demoralization the stress reaction should be considered natural. The literature on demoralization discussed in the current review calls such views into question.
The demoralization syndrome that was discussed in works by Schmale & Engel (Reference Schmale and Engel1967) and Frank (Reference Frank1973), that formed the basis of DCPR criteria (see Table S1) appears to be more in line with the data that are available from this systematic review. Further, there are overlaps between DCPR criteria and the scales that have been used that may further specify the clinical picture. In the late 1960s, Schmale & Engel (Reference Schmale and Engel1967) described the characteristics which may be related to the concept of subjective incompetence: feelings of helplessness and hopelessness; perception of diminished competence and control in one's own functioning; impairment in relationships with significant others; external environment and one's performance do not fulfil the subject's expectations given by previous experiences; loss of sense of continuity between past and future, with diminished hope and confidence in projecting oneself into the future; proneness to revive previous unsuccessful or frustrating experiences. Such formulation has been confirmed in a study using Ryff's Psychological Well-Being Scales (Reference Ryff1989), outlining impairments with autonomy, environmental mastery, purpose in life, positive relations, and self-acceptance (Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011).
Other findings support de Figueiredo's (Reference de Figueiredo1993) definition of demoralization as the convergence of psychological distress and subjective incompetence (Grandi et al. Reference Grandi, Fabbri, Tossani, Mangelli, Branzi and Mangelli2001; Marchesi & Maggini, Reference Marchesi and Maggini2007). Indeed, demoralization does not appear to simply represent subthreshold psychological distress (Porcelli et al. Reference Porcelli, De Carne and Todarello2004; Ottolini et al. Reference Ottolini, Modena and Rigatelli2005; Ferrari et al. Reference Ferrari, Galeazzi, Mackinnon and Rigatelli2008; Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011).
In the theoretical framework of the cognitive reformulation of the learned helplessness theory (Seligman, Reference Seligman1975), that is, the hopesslessness theory of depression (Abramson et al. Reference Abramson, Metalsky and Alloy1989) hopelessness is seen as a cognitive vulnerability to depression. Demoralization in this sense may be viewed as a state characterized by a tendency to attribute negative life events to causes which are internal (i.e. subjective incompetence) and stable (i.e. hopelessness). In this view, some demoralized individuals may develop depression if attributions of negative outcomes become global rather than remain specific to a stressful situation and current coping abilities.
Clinical implications
The DCPR Structured Interview has been applied in a greater variety of medical contexts, contributing to its generalizability across medical and psychiatric settings. The studies which employed the DCPR provide the most amount of information on the differentiability of demoralization from depression and other psychiatric mood disorders (i.e. dysthymia, minor depression, cyclothymia, anxiety disorders). While the DCPR criteria provide a very helpful basis for the identification of demoralization, monitoring of the syndrome, particularly throughout the course of medical illness, requires additional instruments that may provide incremental information (Tomba & Bech, Reference Tomba and Bech2012).
Specifically, results obtained with DCPR criteria (Mangelli et al. Reference Mangelli, Fava, Grandi, Grassi, Ottolini, Porcelli, Rafanelli, Rigatelli and Sonino2005; Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011) confirm previous phenomenological observations (de Figueiredo, Reference de Figueiredo1993) on the differentiation between demoralization and major depression. Several authors (de Figueiredo & Frank, Reference de Figueiredo and Frank1982; de Figueiredo, Reference de Figueiredo1993, Reference de Figueiredo2013; Cockram et al. Reference Cockram, Doros and de Figueiredo2009) have argued that low motivation to action in demoralization is thought to be caused by a sense of subjective incompetence, while in depression there is an outright decreased magnitude of motivation. Major distinctions between demoralization and ‘endogenomorphic’ depression in alteration of appetite and sleep cycle have also been underscored by the authors. According to Klein et al. (Reference Klein, Gittelman, Quitkin and Rifkin1980), in demoralization, anticipatory pleasure, the ability to derive pleasure from the anticipation of an event, is negatively affected, while consummatory pleasure, the ability to enjoy the event itself, has been observed to remain intact. In the depressed individual, however, both anticipatory and consummatory pleasures are adversely affected.
Not only is the distinction between demoralization and major depression feasible, but the addition of depression to demoralization does not alter the psychobiological features of the latter. Indeed, the co-occurrence of demoralization significantly worsens the clinical status of patients (Grandi et al. Reference Grandi, Sirri, Tossani and Fava2011). In factor analytic studies (Kissane et al. Reference Kissane, Clarke and Street2001; Clarke et al. Reference Clarke, Kissane, Trauer and Smith2005; Jacobsen et al. Reference Jacobsen, Vanderwerker, Block, Friedlander, Maciejewski and Prigerson2006) demoralization has been shown to be distinguishable from depression. Specifically, the syndrome has been shown to be distinct from anhedonia, a core feature of MDD and grief (Clarke et al. Reference Clarke, Kissane, Trauer and Smith2005).
Differentiating demoralization and depression may especially be important in the psychiatric setting. For instance, demoralization was found to frequently occur in association with anxiety disorders (Fava et al. Reference Fava, Guidi, Semprini, Tomba and Sonino2010b), but it is frequently subsumed under the rubric of major or minor depression. It is conceivable, even though yet to be tested, that demoralization that occurs in the course of cognitive behavioral treatment may improve during the continuation of therapy (Emmrich et al. Reference Emmrich, Beesdo-Baum, Gloster, Knappe, Höfler, Arolt, Deckert, Gerlach, Hamm, Kircher, Lang, Richter, Ströhle, Zwanzger and Wittchen2012) or respond to specific cognitive strategies, whereas depressive features may require pharmacological treatment.
A possible collocation for the demoralization syndrome in the Diagnostic Manual of Mental Disorders (APA, 2013) is in the ‘psychological factors affecting medical condition’ category, as a useful clinical specification (Fava et al. Reference Fava, Fabbri, Sirri and Wise2007; Wise, Reference Wise2009).
Suggestions for further research
A number of research needs emerge from our analysis of the literature.
Differentiation from mood disorders
Further evidence of the differentiation of demoralization from mood disorders is needed. While the differentiation of demoralization from major depression has been supported in DCPR studies, further evidence of the differentiation of the syndrome from minor depression and dysphoria is needed. Several studies in the current review have reported differential prevalence rates from demoralization syndrome and minor depression and dysthymia. However, sample sizes were small and limited to cardiovascular patients (Rafanelli et al. Reference Rafanelli, Roncuzzi, Finos, Tossani, Tomba, Mangelli, Urbinati, Pinelli and Fava2003, Reference Rafanelli, Roncuzzi and Milaneschi2006, Reference Rafanelli, Milaneschi and Roncuzzi2009, Reference Rafanelli, Milaneschi, Roncuzzi and Pancaldi2010, Reference Rafanelli, Offidani, Gostoli and Roncuzzi2012).
Furthermore, the temporal relationship between demoralization and major depression remains unclear and longitudinal studies are needed. Several authors have described demoralization as a possible prodromal state to depression or suicidality (Kissane et al. Reference Kissane, Clarke and Street2001; Rickelman, Reference Rickelman2002; de Figueiredo, Reference de Figueiredo2013). Indeed there is evidence for a continuum between hopelessness and major depression (Haslam & Beck, Reference Haslam and Beck1994; Iacoviello et al. Reference Iacoviello, Alloy, Abramson, Choi and Morgan2013). Once a basic formulation of demoralization is confirmed and divergent validity from mood disorders is adequately supported, future studies may explore other aspects and applications of the demoralization syndrome as well as its treatment.
Determination of incremental validity
Little is known about the correlations among different instruments measuring demoralization and their differential sensitivity. A high correlation is often regarded as evidence that two scales measure the same factor. Common content of two scales may ensure a high positive correlation between them, but the items they do not share may be important in determining their sensitivity (Fava et al. Reference Fava, Guidi, Semprini, Tomba and Sonino2012b; Tomba & Bech, Reference Tomba and Bech2012).
Demoralization in psychiatric settings
There is very little research on the role of demoralization in the setting of psychiatric disease (Chaturvedi & Goswami, Reference Chaturvedi and Goswami2012; Tomba et al. Reference Tomba, Rafanelli, Grandi, Guidi and Fava2012; Abbate-Daga et al. Reference Abbate-Daga, Delsedime, Nicotra, Giovannone, Marola, Amianto and Fassino2013; Kohn, Reference Kohn2013; Tossani et al. Reference Tossani, Ricci Garotti and Cosci2013). Adamson & Schmale (Reference Adamson and Schmale1965) pioneered the studies on the role of demoralization and giving up in the prodromal phase of psychiatric disorders. The high prevalence of demoralization in anorexia nervosa (Abbate-Daga et al. Reference Abbate-Daga, Delsedime, Nicotra, Giovannone, Marola, Amianto and Fassino2013) and substance use disorders (Tossani et al. Reference Tossani, Ricci Garotti and Cosci2013) underline the importance in considering the role of demoralization in the maintenance of compulsive behaviors. Indeed a perceived lack of control has been found to be associated with demoralization in psychiatric patients (Jackson & Tessler, Reference Jackson and Tessler1984).
Demoralization as a risk factor
Schmale (Reference Schmale1972) postulated that giving up may increase vulnerability to the development of medical disease. It has been found to be a prodromal symptom of serious illness (Ottolini et al. Reference Ottolini, Modena and Rigatelli2005; Rafanelli et al. Reference Rafanelli, Roncuzzi, Milaneschi, Tomba, Colistro, Pancaldi and Di Pasquale2005) Furthermore, demoralization may also constitute a risk factor for psychiatric disorders (Kohn, Reference Kohn2013). Demoralization may be examined as a risk factor in longitudinal studies.
Interaction with other psychological variables
This analysis of the literature underscores the need of further research on the impact of demoralization on important clinical phenomena such as allostatic load (McEwen & Stellar, Reference McEwen and Stellar1993), illness behavior (Pilowsky, Reference Pilowsky1997; Sirri et al. Reference Sirri, Fava and Sonino2013), psychological well-being (Ryff, Reference Ryff1989), perceived stress (Cohen et al. Reference Cohen, Kamarck and Mermelstein1983) and suicidality.
Validation of demoralization measures in other populations
A few DCPR and PERI-D studies have investigated the presence of demoralization in the general population or in healthy controls. Future studies that explore the possibility that demoralization develops in the absence of physical illness or mental illness are recommended for all four assessment instruments.
Moreover, there is a lack of validation of the available demoralization instruments in non-Western cultures which is warranted for all instruments. The DCPR, DS, and SIS may be further validated in ethnically diverse community samples as well.
Neurobiologic correlates
The neurobiologic correlates of demoralization are virtually unexplored and the physiological functioning that may potentially differentiate it from depression may unravel important insights. Future investigations may help elucidate the relationship between demoralization syndrome and the learned helplessness state which is known to induce neurochemical depletion and exaggerated activity in the raphe and amygdala (Forgeard et al. Reference Forgeard, Haigh, Beck, Davidson, Henn, Maier, Mayberg and Seligman2011).
Treatment
No randomized controlled trial of a pharmacological or psychological nature has been performed on demoralization patients. According to de Figueiredo (Reference de Figueiredo1993) the distress component can be effectively treated with symptom removal, whereas subjective incompetence requires a more in-depth modification of subjects’ attitudes. This includes the hypothesis that demoralization may require the promotion of well-being and positive functioning (Fava & Tomba, Reference Fava and Tomba2009) and emphasizing of hope and empowerment (Frank, Reference Frank2013). Demoralization may require psychotherapeutic support specifically aimed at increasing a sense of mastery and self-competence (de Figueiredo & Slavney, Reference de Figueiredo and Slavney2000).
Conclusions and limitations
Using validated instruments, there is evidence that demoralization appears to be a distinctive clinical presentation characterized by hopelessness, helplessness, giving up, and subjective incompetence. Furthermore, there is mounting support that demoralization may be an independent condition distinguishable from MDD. Demoralization appears to be common in the medical setting as well as associated with specific clinical aspects and adverse health outcomes. However, several limitations of the current systematic literature review must be considered. First, the different instruments used in the literature contain common features, but also distinct ones. The different definitions and instruments of demoralization that continue to be used make comparison of existing data on the prevalence and construct validity of demoralization open for discussion and further validation.
Nonetheless these findings give rise to several clinical implications. First, the demoralization syndrome warrants careful consideration in the clinical and medical context through valid assessment procedures that permit identification of cases in medical patients. Second, demoralization as a distinct condition may require the development of tailored and targeted treatment approaches.
The majority of studies reviewed are cross-sectional in nature which presents a clear limitation in interpretation of the reported results. Future research would benefit from longitudinal studies. The interactive nature of physical and psychological processes is evident in the literature, supporting the need for a more integrative and multifactorial model.
Supplementary material
For supplementary material accompanying this paper visit http://dx.doi.org/10.1017/S0033291714001597.
Declaration of Interest
None.
