Meaning and Purpose (MaP) therapy in advanced cancer patients: a randomised controlled trial.

PURPOSE: We aimed to examine the efficacy of Meaning and Purpose (MaP) Therapy in promoting posttraumatic growth and meaningful life attitudes (choices and goal seeking) in people living with advanced cancer. METHODS: Patients with a prognosis ≥ 1 year were stratified across two sites and randomised to receive MaP therapy and regular oncology/palliative care (Intervention) or usual care (Control). They completed measures at baseline (t0), post-intervention (12 weeks, t1) and 12 weeks later (t2). Our primary outcome was posttraumatic growth (PTGI); secondary outcome measures included life attitudes (LAPR), spiritual wellbeing (FACIT-Sp), anxiety, demoralization and depression. TRIAL REGISTRATION NUMBER: ACTRN12618001751268, 7 January 2019. RESULTS: We consented 107 from 404 eligible patients (26.5%) and randomised 55 to MaP Invention (35 completing t1, 25 t2) and 52 to Control (32 completing t1, 25 t2). Fidelity of the intervention was sustained. PTGI mean scores were significantly higher post-intervention on analysis by covariance (Cohen's d = 0.7 at t1 & d = 0.5 at t2). Secondary measures were significant, including LAPR (d = 0.4) and FACIT-Sp (meaning subscale d = 0.4; total d = 0.4). Participants completing six sessions achieved more noteworthy effect sizes. CONCLUSION: This brief, structured individual intervention shows promise for sustaining sense of coherence, meaning and choices in life despite living with advanced cancer.

Validation of the Canadian Version of the Shame and Stigma Scale for Head and Neck Cancer Patients.

Cancers of the head and neck and their treatment can cause disfigurement and loss of functioning, with a profound negative impact on the person's self-image and psychosocial wellbeing. This can lead to experiences of shame and stigma, which are important targets for psychosocial interventions. Accurate measurement and identification of these problems enables clinicians to offer appropriate interventions and monitor patients' progress. This study aimed to validate the Canadian version of the Shame and Stigma Scale (SSS) among French- and English-speaking head and neck cancer patients. Data from 254 patients from two major Canadian hospitals were analysed. The existing four-factor structure of the SSS was supported, with the following subscales: Shame with Appearance, Sense of Stigma, Regret, and Social/Speech Concerns. The Canadian SSS showed adequate convergent and divergent validity and test-retest reliability. Rasch analysis suggested scale improvement by removing two misfitting items and two items with differential functioning between French- and English-speaking patients. The final 16-item scale version was an adequate fit with the Rasch model. The SSS provides more accurate measures for people with high levels of shame and stigma, and thus has utility in identifying patients with more severe symptoms who may be in need of psychosocial interventions.

Real World Experience of Change in Psycho-Existential Symptoms in Palliative Care.

CONTEXT: Psycho-existential symptoms in palliative care are addressed insufficiently. Routine screening, ongoing monitoring and meaningful treatment of psycho-existential symptoms may contribute to the relief of suffering in palliative care. OBJECTIVES: We sought to explore longitudinal change in psycho-existential symptoms following the routine implementation of the Psycho-existential Symptom Assessment Scale (PeSAS) in Australian palliative care services. METHODS: Using a multisite rolling design, we implemented the PeSAS to longitudinally monitor symptoms in a cohort of 319 patients. We assessed change scores for each symptom in groups with mild (≤3), moderate (4-7) and severe (≥8) symptomatology at baseline. We tested significance between these groups and used regression analyses to identify predictors. RESULTS: While one half of patients denied clinically important psycho-existential symptoms, for the remainder, overall, more patients improved than deteriorated. Between 20% and 60% of patients with moderate and severe symptoms improved, while another 5%-25% developed new symptom distress. Patients with severe baseline scores improved significantly more than those with moderate baseline scores. CONCLUSION: As we better recognize through screening patients carrying psycho-existential distress in palliative care programs, there is considerable room for improvement in ameliorating this suffering. Inadequate clinical skills, poor psychosocial staffing or a biomedical program culture may all contribute to inadequate symptom control. Person-centered care necessitates greater attention to authentic multidisciplinary care that ameliorates psycho-spiritual and existential distress.

Unmet spiritual needs in palliative care: psychometrics of a screening checklist.

BACKGROUND: While studies in palliative care use measures of spirituality and religious belief, there have been few validation studies of a screening tool that identifies unmet spiritual needs. METHODS: A multidisciplinary research team developed and examined the usefulness, reliability and validity of a 17-item Spiritual Concerns Checklist (SCC) as a screening tool for unmet spiritual needs. A cohort of patients recruited from three palliative care services in Sydney and Melbourne, Australia completed anonymous questionnaires. Factor structure and item response theory were used to examine its properties; concurrent validity employed the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). RESULTS: Among 261 patients, while only 15% directly sought spiritual care, nearly 62% identified at least one spiritual concern. Existential needs (fear of the dying process 32%; loss of control 31%), regret (20%), need for forgiveness (17%), guilt (13%), loss of hope (13%) and meaning (15%) were prominent concerns. Eleven concerns were present for more than 10% of the participants and 25% of religiously orientated participants expressed >4 concerns. The 17-item SCC was unidimensional, with satisfactory reliability. Concurrent validity was evident in the reduced sense of meaning and peace on the FACIT-Sp-12. CONCLUSION: This preliminary Rasch analysis of the newly developed SCC has demonstrated its usefulness, reliability and validity. Our findings encourage refinement and ongoing development of the SCC with further investigation of its psychometric properties in varying populations.

The Demoralization Interview: Reliability and validity of a new brief diagnostic measure among medically ill patients.

BACKGROUND: Demoralization is a state of low morale and poor coping that is being increasingly recognized in stressful circumstances, such as illness. Meta-analyses show prevalence of 30% in the medically and 50% in the mentally ill. A brief structured diagnostic interview is needed to assess for and diagnose demoralization. METHODS: The Demoralization Interview (DI) was designed from items of the Demoralization Scale-II (DS-II) and common items used in other clinical interviews. The resultant 26 items were administered to 264 patients with serious progressive medical illnesses, together with the DS-II, measures of depression, anxiety, and quality of life. Rasch analysis was used to co-calibrate the DI against the DS-II. Sensitivity, specificity, and area under the receiver operating characteristics curve (AUROC) were assessed. Concurrent validation was conducted against measures of anxiety, depression, and quality of life. RESULTS: A 14-item Demoralization Interview (DI) with a diagnostic threshold of 6 symptoms generated sensitivity of 78.0%, specificity of 90.9%, and AUROC of 0.84 against the DS-II. Unidimensionality was indicated, with a Cronbach's alpha of 0.81. For respondents with 6 or more symptoms on the DI, 98% recognized a current stressor and 66% described significant distress or functional impairment. Demoralized respondents carried significantly lower quality of life, higher physical disability, and higher depressive and anxiety symptoms. CONCLUSIONS: The DI has good reliability and validity, with a threshold of 6 symptoms supporting a diagnosis of demoralization. It could be used as a stand-alone diagnosis, or as a specifier for adjustment disorder or depression.

Psycho-Existential Symptom Assessment Scale (PeSAS) Screening in Palliative Care.

CONTEXT: Psycho-existential symptoms are common yet often missed or neglected in palliative care. Screening can be an effective way to recognize and respond to this need. OBJECTIVES: We aimed to implement routine use of the Psycho-existential Symptom Assessment Scale (PeSAS) as a screening tool in Australian palliative care services and discern the symptom prevalence identified. METHODS: In a multi-site rolling design, we established implementation site committees and embarked on experiential workshops to train clinicians in the tool's efficient use. Patient symptom prevalence data were collected to compare uptake across sites. Descriptive statistics were applied. RESULTS: Over one year, we trained 216 clinicians across six palliative care services in the use of the PeSAS as a screening tool and collected data from 1405 patients. Clinicians reported significant growth in their sense of efficacy in assessing psycho-existential wellness. Services using electronic records implemented most easily. Psycho-existential symptoms with clinically significant prevalence (scores ≥ 4/10) included anxiety 41.1%, discouragement 37.6%, hopelessness 35.8%, pointlessness 26.9%, depression 30.3%, and the wish to die 17%. The precision of measurement within 3% was found for severe ratings (score ≥ 8/10) including anxiety 10.6%, depression 10.2%, the wish to die 7.6%, and confusion 3.6%. CONCLUSION: Clinicians can be trained to screen with the Psycho-existential Symptom Assessment Scale, which serves as a valuable measure to better recognize symptoms of psycho-existential distress among palliative care patients. Implementation barriers included the prior ethos of the service, confidence in talking about these themes, electronic data entry, and perceived time pressures.

Demoralisation and its link with depression, psychological adjustment and suicidality among cancer patients: A network psychometrics approach.

BACKGROUND: Demoralisation is a clinically significant problem among cancer patients with a prevalence of 13%-18%. It is defined by difficulty in adjusting to a stressor, wherein the person feels trapped in their predicament and experiences helplessness, hopelessness, loss of confidence and loss of meaning in life. Demoralisation has a strong link with the desire for hastened death and suicidal ideation among the medically ill. This study explored whether a group of symptoms could be identified, distinct from depression, but consistent with adjustment difficulties with demoralisation and linked to ideation of death and suicide. METHODS: Exploratory Graph Analysis, a network psychometrics technique, was conducted on a large German study of 1529 cancer patients. Demoralisation was measured with the Demoralisation Scale II and depressive symptoms with the PHQ-9. RESULTS: A network of symptoms, with four stable communities, was identified: 1. Loss of hope and meaning; 2. Non-specific emotionality; 3. Entrapment; 4. Depressive symptoms. The first three communities were clearly distinct from the PHQ-9 depressive symptoms, except for suicidality and fear of failure. Community 1, Loss of hope and meaning, had the strongest association with thoughts of death and suicide. Hopelessness, loss of role in life, tiredness, pointlessness and feeling trapped were the most central symptoms in the network. CONCLUSIONS: Communities 1 to 3 are consistent with poor coping without anhedonia and other classic depression symptoms, but linked to suicidal ideation. For people facing the existential threat of cancer, this may indicate poor psychological adjustment to the stressors of their illness.

The role of depression and other psychological factors in work ability among breast cancer survivors in Australia.

OBJECTIVE: Identifying modifiable factors affecting work ability among cancer survivors is important. The primary aim of the present study was to examine the effects of depression and related psychological factors on work ability among breast cancer survivors in Australia. METHODS: In this cross-sectional electronic and postal survey, Australian breast cancer survivors were investigated. Work status and conditions before and after cancer treatment were analysed. Work ability was measured using the Work Limitation Questionnaire©-Short Form (WLQ-SF) with its four domains (time management, physical tasks, mental-interpersonal tasks, and output tasks). Three psychological factors were investigated: depression, fear of cancer recurrence, and demoralisation. Sociodemographic and clinical data were also collected. Multivariate regression analysis was used to identify the associations of psychological factors with WLQ-SF. RESULTS: Among eligible survivors, 310 (50%) responded to the survey and were analysed. Nearly one third reported their work conditions had changed after cancer treatment. The depressed group reported limited work ability in 35%-44% of the four domains of WLQ-SF, while the non-depressed group reported limited work ability in only 8%-13%. At-work productivity loss was approximately fourfold higher in the depressed group than in the non-depressed group. In multivariate analysis, at-work productivity loss was associated with depression, demoralisation, and past history of anxiety. CONCLUSIONS: After breast cancer treatment, work conditions changed toward lower wages and working hours. Depression, demoralisation, and past history of anxiety were associated with lower work ability. Further evaluations of work rehabilitation in breast cancer survivors are warranted.

Measuring postnatal demoralisation: adaptation of the Demoralisation Scale-II (DS-II) for postnatal use.

OBJECTIVE: To examine the psychometric properties of the Demoralisation Scale II (DS-II) and adapt it for use with women in the postnatal period. BACKGROUND: Demoralisation is a psychological state characterised by a sense of incompetence and feelings of helplessness and hopelessness in response to a stressful situation. The postnatal period is a life stage of many disruptions. Women may lose their confidence and become demoralised if feeling unprepared for the tasks of motherhood. The DS-II is a 16-item scale developed among cancer patients, but with content that is also relevant postnatally, including items on sense of failure, helplessness, hopelessness, isolation, entrapment and loss of purpose. METHODS: Rasch analysis was used to investigate the psychometric properties of the DS-II and refine the scale for postnatal use. RESULTS: Participants were 209 women admitted with their babies to a residential early parenting programme. A 14-item revised scale was derived, the Postnatal DS-II, showing good psychometric properties, discriminant validity and sensitivity to change, and being well targeted to the sample. CONCLUSION: The Postnatal DS-II could have utility as an assessment tool, helping clinicians to understand better women's postnatal experiences, assess the effectiveness of interventions and communicate with women in a meaningful and non-stigmatising way.

Health Anxiety and Its Relationship to Disability and Service Use: Findings From a Large Epidemiological Survey.

OBJECTIVE: To explore the contribution of health anxiety to disability and use of mental health and medical services, independently of co-occurring mental and physical conditions. METHODS: Data from the Australian National Survey of Mental Health and Wellbeing 2007 were analyzed (n = 8841). Participants were aged 16 to 85 years (mean [standard deviation] = 46.3 [19.0] years) and 54% were women. RESULTS: Health anxiety accounted independently for high disability and service use. People with health anxiety were more likely to use both mental health (for psychiatrists: odds ratio [OR] = 2.1, 95% confidence interval [CI] = 1.2-3.5; for psychologists: OR = 1.9, 95% CI = 1.2-3.3) and specialist medical services (OR = 1.7, 95% CI = 1.2-2.3) than people without health anxiety. However, they were not high-frequency attenders to specialist mental health services (OR = 1.6 [95% CI = 0.9-3.0] and OR = 1.3 [95% CI = 0.6-2.9]) compared with people with other mental disorders (OR = 11.7 [95% CI = 4.3-31.8] and OR = 29.5 [95% CI = 13.5-64.6] for psychiatrists and psychologists, respectively). People with health anxiety were likely to be high-frequency attenders to general practice (OR = 2.0, 95% CI = 1.4-2.8) and specialist medical services (OR = 2.4, 95% CI = 1.7-3.6). CONCLUSIONS: It is important to recognize and treat health anxiety, even when coexisting with other conditions, to prevent high disability burden and excessive service use. The cross-sectional design and self-reported outcomes may have resulted in overestimation of the associations. Future work is needed on actual service use using reviews of medical records.

Early postnatal demoralisation among primiparous women in the community: measurement, prevalence and associated factors.

BACKGROUND: Demoralisation is a psychological state occurring in stressful life situations where a person feels unable to respond effectively to their circumstances, characterised by feelings of distress, subjective incompetence, helplessness and hopelessness. The period after the birth of a first baby is a time of great changes and disruptions to many aspects of the mother's physical, psychological and social functioning. This can lead to feelings of distress, a sense of incompetence and helplessness. This study aimed to examine: (1) the psychometric properties of the Demoralisation Scale in a community setting; (2) the prevalence of demoralisation symptoms among primiparous women in the community; and (3) factors that are uniquely associated with demoralisation in the early postnatal period. METHODS: Primiparous women attending community maternal health centres (n = 400) were recruited and administered the study's questionnaires through a telephone interview. RESULTS: The Demoralisation Scale was found to be a reliable and valid tool among women in the community who had recently given birth. Higher levels of demoralisation were independently associated with lower confidence on going home from the hospital after birth, lower rating of mother's self-rated global health, more than 3 h of infant crying and fussing in the last 24 h, and a controlling partner, after symptoms of depression and anxiety, and vulnerable personality characteristics were controlled for. CONCLUSIONS: The relevance of demoralisation to postnatal health practitioners in the community is in helping them to better understand women's experiences and to intervene in a way that is more meaningful and less stigmatising to women.

A cluster randomised controlled trial of a brief couple-focused psychoeducational intervention to prevent common postnatal mental disorders among women: study protocol.

INTRODUCTION: Postnatal common mental disorders among women are an important public health problem internationally. Interventions to prevent postnatal depression have had limited success. What Were We Thinking (WWWT) is a structured, gender-informed, psychoeducational group programme for parents and their first infant that addresses two modifiable risks to postnatal mental health. This paper describes the protocol for a cluster randomised controlled trial to test the clinical effectiveness and cost-effectiveness of WWWT when implemented in usual primary care. METHODS AND ANALYSIS: 48 maternal and child health (MCH) centres from six diverse Local Government Areas, in Victoria, Australia are randomly allocated to the intervention group (usual care plus WWWT) or the control group (usual care). The required sample size is 184 women in each group. English-speaking primiparous women receiving postpartum healthcare in participating MCH centres complete two computer-assisted telephone interviews: baseline at 4 weeks and outcome at 6 months postpartum. Women attending intervention MCH centres are invited to attend WWWT in addition to usual care. The primary outcome is meeting Diagnostic and Statistical Manual-IV (DSM-IV) diagnostic criteria for major depressive episode; generalised anxiety disorder; panic disorder with or without agoraphobia, agoraphobia with or without panic, social phobia, adult separation anxiety or adjustment disorder with depressed mood, anxiety or mixed depressed mood and anxiety within the past 30 days at 6 months postpartum. Secondary outcomes are self-rated general and emotional health, infant sleep problems, method of infant feeding, quality of mother-infant relationship and intimate partner relationship, and healthcare costs and outcomes. ETHICS AND DISSEMINATION: Approval to conduct the study has been granted. A comprehensive dissemination plan has been devised. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry ACTRN12613000506796. UTN: U1111-1125-8208.

Changes in met perceived need for mental healthcare in Australia from 1997 to 2007.

BACKGROUND: The Australian National Survey of Mental Health and Wellbeing conducted in 1997 and 2007 allows for exploration of changes in perceptions of mental healthcare. Major demographic, economic and health-behaviour changes have unfolded in Australia during this time. Governments also have increased spending on mental health services and been active in mental healthcare policy-making and implementation. AIMS: To compare rates of meeting of perceived need for mental healthcare between these two surveys dealing with adjustable sources of error. METHOD: Combined data-sets from 1997 and 2007 were analysed to provide weighted population estimates. Selection, indirect standardisation to a common reference population and multinomial logistic regression were employed, addressing bias and confounding. RESULTS: Between 1997 and 2007 perceived need for information, counselling and skills training among people who consulted a general practitioner, psychiatrist, or psychologist for mental health reasons has increased. Within these service users, increases in perceived responses from services are evident among people who have perceived needs for information provision and counselling. CONCLUSIONS: Policy and service changes are among possible causal explanations. Generally, trends are in the direction that policy changes were intended to achieve, giving some encouragement that these initiatives have had some effect. Reduced unmet perceived need suggests improved access to some interventions. However, the proportion of service responses to perceived need seen as sufficient is generally unchanged. This suggests the adequacy of treatments offered, as perceived by the Australian public, may not have improved and that a continued focus on quality of care is important for the future.

Perceived need for mental health care and barriers to care in the Netherlands and Australia.

PURPOSE: This study of Australian and Dutch people with anxiety or depressive disorder aims to examine people's perceived needs and barriers to care, and to identify possible similarities and differences. METHODS: Data from the Australian National Survey of Mental Health and Well-Being and the Netherlands Study of Depression and Anxiety were combined into one data set. The Perceived Need for Care Questionnaire was taken in both studies. Logistic regression analyses were performed to check if similarities or differences between Australia and the Netherlands could be observed. RESULTS: In both countries, a large proportion had unfulfilled needs and self-reliance was the most frequently named barrier to receive care. People from the Australian sample (N = 372) were more likely to perceive a need for medication (OR 1.8; 95% CI 1.3-2.5), counselling (OR 1.4; 95% CI 1.0-2.0) and practical support (OR 1.8; 95% CI 1.2-2.7), and people's overall needs in Australia were more often fully met compared with those of the Dutch sample (N = 610). Australians were more often pessimistic about the helpfulness of medication (OR 3.8; 95% CI 1.4-10.7) and skills training (OR 3.0; 95% CI 1.1-8.2) and reported more often financial barriers for not having received (enough) information (OR 2.4; 95% CI 1.1-5.5) or counselling (OR 5.9; 95% CI 2.9-11.9). CONCLUSIONS: In both countries, the vast majority of mental health care needs are not fulfilled. Solutions could be found in improving professionals' skills or better collaboration. Possible explanations for the found differences in perceived need and barriers to care are discussed; these illustrate the value of examining perceived need across nations and suggest substantial commonalities of experience across the two countries.

Distributing mental health care resources: strategic implications from the National Survey of Mental Health and Wellbeing.

OBJECTIVE: This paper considers mental health services resource distribution under the Australian second national mental health plan, with its direction to mental health services to be more inclusive of people with higher prevalence psychiatric disorders. We consider inequalities in mental health in Australia,and describe the performance of the composite census variable employed in the Victorian mental health funding distribution formula, the index of relative socioeconomic disadvantage (IRSED), in predicting disorder rates and perceived needs for care. METHOD: We review data sets generated through the National Survey of Mental Health and Wellbeing (NSMHWB) for their utility in development of resource distribution formulae. We present analyses from the 10 641 cases examined in the household survey to explore the role of the IRSED in predicting prevalence rates of anxiety, affective, substance misuse and other disorders,as well as perceived need for care. RESULTS: Recent epidemiological studies provide some additional sources of data to guide resource distribution,although the available data sets are found not to be optimized for examination of this issue. Greater levels of socioeconomic disadvantage of areas are associated with increased rates of morbidity in metropolitan areas, with different patterns for different disorder groups. The influence of the IRSED is more complex outside the major cities. CONCLUSIONS: The descriptive epidemiological data now available, despite significant investment, are relatively crude instruments for this current purpose. The findings support the case for using the IRSED as a proxy indicator for morbidity for the high prevalence disorders, but only within metropolitan areas. This examination confirms the existence of significant inequalities in mental health between Australian urban areas with different socioeconomic characteristics.

Psychiatry and the need for mental health care in Australia: findings from the National Survey of Mental Health and Wellbeing.

OBJECTIVE: This paper describes the pattern of consultations reported with psychiatrists and primary mental health care providers in the Australian adult population. It explores whether inequalities found in utilization of psychiatric services according to area are different in degree from inequalities in utilization of medical and surgical specialists,and describes the meeting of perceived needs for mental health care within those seen by psychiatrists. METHOD: The National Survey of Mental Health and Wellbeing (NSMHW) was a community survey employing clustered probability sampling, with a computerized field questionnaire which included sections of the composite international diagnostic interview (CIDI), as well as self-reported service utilization and perceived needs for care. RESULTS: By survey estimates, 1.8% of the Australian population consulted a psychiatrist in the last year. Among people with an ICD 10-diagnosed mental disorder, 7.3% consulted a psychiatrist. Only about one in five people seen by a psychiatrist report the psychiatrist as the only mental health care provider. Disadvantaged areas of the cities and remote areas, when compared with the least deprived areas of the cities, showed lower rates of utilization. This effect is stronger in psychiatry than in other specialties. Patients seeing psychiatrists seem to be a more satisfied group than those seeing only other providers; nonetheless, some needs are not well met, and the role of the psychiatrist cannot be isolated as the cause of this satisfaction. CONCLUSIONS: Most care delivered by psychiatrists is de facto shared care. Psychiatrists as clinical professionals need to be continually mindful of the need to communicate with others providing care. Psychiatric services in Australia are not delivered in an equitable manner,and the inequalities are greater for psychiatric services than for other medical specialties.