The effectiveness and safety of dialectical behavior therapy for suicidal ideation and behavior in autistic adults: a pragmatic randomized controlled trial.

BACKGROUNDS: Many autistic people in mental health are suicidal. This study evaluated the effectiveness of dialectical behavior therapy (DBT) v. treatment as usual (TAU) in reducing suicidal ideation and suicide attempts. METHODS: At six Dutch mental health centers, 123 outpatients (18-65 years) with DSM-5 diagnosed autism spectrum disorder (ASD) and suicidal behavior were randomly assigned to the DBT intervention group (n = 63) or TAU control group (n = 60). Assessments were conducted at baseline, post-treatment at 6 months and 12-month follow-up. The primary outcomes were severity of suicidal ideation and frequency of suicide attempts. The severity of depression and social anxiety were secondary outcomes. RESULTS: At end-of-treatment, DBT significantly reduced both suicidal ideation (z = -2.24; p = 0.025; b = -4.41; s.e. = 197.0) and suicide attempts (z = -3.15; p = 0.002; IRR = 0.046; s.e. = 0.045) compared to TAU, but lost statistical significance at the 12-month follow-up. Depression severity significantly decreased with DBT (z = -1.99; p = 0.046: b = -2.74; s.e. = 1.37) remaining so at 12 months (z = -2.46; p = 0.014; b = -3.37; s.e. = 1.37). No effects were observed on social anxiety. Severe adverse events included two suicides in the TAU condition. CONCLUSIONS: DBT is an acceptable, safe, and short-term effective intervention to reduce suicidal ideation and suicide attempts in autistic adults with suicidal behavior.

The Effects of Internet-Based Cognitive Behavioral Therapy for Suicidal Ideation or Behaviors on Depression, Anxiety, and Hopelessness in Individuals With Suicidal Ideation: Systematic Review and Meta-Analysis of Individual Participant Data.

BACKGROUND: Suicide is a global public health problem. Digital interventions are considered a low-threshold treatment option for people with suicidal ideation or behaviors. Internet-based cognitive behavioral therapy (iCBT) targeting suicidal ideation has demonstrated effectiveness in reducing suicidal ideation. However, suicidal ideation often is related to additional mental health problems, which should be addressed for optimal care. Yet, the effects of iCBT on related symptoms, such as depression, anxiety, and hopelessness, remain unclear. OBJECTIVE: We aimed to analyze whether digital interventions targeting suicidal ideation had an effect on related mental health symptoms (depression, anxiety, and hopelessness). METHODS: We systematically searched CENTRAL, PsycInfo, Embase, and PubMed for randomized controlled trials that investigated guided or unguided iCBT for suicidal ideation or behaviors. Participants reporting baseline suicidal ideation were eligible. Individual participant data (IPD) were collected from eligible trials. We conducted a 1-stage IPD meta-analysis on the effects on depression, anxiety, and hopelessness-analyzed as 2 indices: symptom severity and treatment response. RESULTS: We included IPD from 8 out of 9 eligible trials comprising 1980 participants with suicidal ideation. iCBT was associated with significant reductions in depression severity (b=-0.17; 95% CI -0.25 to -0.09; P<.001) and higher treatment response (ie, 50% reduction of depressive symptoms; b=0.36; 95% CI 0.12-0.60; P=.008) after treatment. We did not find significant effects on anxiety and hopelessness. CONCLUSIONS: iCBT for people with suicidal ideation revealed significant effects on depression outcomes but only minor or no effects on anxiety and hopelessness. Therefore, individuals with comorbid symptoms of anxiety or hopelessness may require additional treatment components to optimize care. Studies that monitor symptoms with higher temporal resolution and consider a broader spectrum of factors influencing suicidal ideation are needed to understand the complex interaction of suicidality and related mental health symptoms.

Safety planning-type interventions for suicide prevention: meta-analysis.

BACKGROUND: Safety planning-type interventions (SPTIs) for patients at risk of suicide are often used in clinical practice, but it is unclear whether these interventions are effective. AIMS: This article reports on a meta-analysis of studies that have evaluated the effectiveness of SPTIs in reducing suicidal behaviour and ideation. METHOD: We searched Medline, EMBASE, PsycINFO, Web of Science and Scopus from their inception to 9 December 2019, for studies that compared an SPTI with a control condition and had suicidal behaviour or ideation as outcomes. Two researchers independently extracted the data. To assess suicidal behaviour, we used a random-effects model of relative risk based on a pooled measure of suicidal behaviour. For suicidal ideation, we calculated effect sizes with Hedges' g. The study was registered at PROSPERO (registration number CRD42020129185). RESULTS: Of 1816 unique abstracts screened, 6 studies with 3536 participants were eligible for analysis. The relative risk of suicidal behaviour among patients who received an SPTI compared with control was 0.570 (95% CI 0.408-0.795, P = 0.001; number needed to treat, 16). No significant effect was found for suicidal ideation. CONCLUSIONS: To our knowledge, this is the first study to report a meta-analysis on SPTIs for suicide prevention. Results support the use of SPTIs to help preventing suicidal behaviour and the inclusion of SPTIs in clinical guidelines for suicide prevention. We found no evidence for an effect of SPTIs on suicidal ideation, and other interventions may be needed for this purpose.

The effect of dialectical behaviour therapy in autism spectrum patients with suicidality and/ or self-destructive behaviour (DIASS): study protocol for a multicentre randomised controlled trial.

BACKGROUND: Many persons with autism spectrum disorder (ASD) are treated in long-term specialised care. In this population, suicidal behaviour troubles patients, families, and specialists in the field because it is difficult to treat. At present, there is no documented effective therapy for suicidal behaviour in ASD (Autism Research 7:507-521, 2014; Crisis 35:301-309, 2014). Dialectical Behaviour Therapy (DBT) is an efficacious treatment programme for chronically suicidal and/or self-harm behaviour in patients with Borderline Personality Disorder (J Psychiatry 166:1365-1374, 2014; Linehan MM. Cognitive behavioural therapy of borderline personality disorder. 1993). This study will evaluate the efficacy of DBT in persons with ASD and suicidal/ self- destructive behaviour in a multicentre randomised controlled clinical trial. METHOD: One hundred twenty-eight persons with autism and suicidal and/or self-harming behaviour will be recruited from specialised mental healthcare services and randomised into two conditions: 1) the DBT condition in which the participants have weekly individual cognitive behavioural therapy sessions and a 2.5 h skills training group session twice per week during 6 months, and 2) the treatment as usual condition which consists of weekly individual therapy sessions of 30-45 min with a psychotherapist or social worker. Assessments will take place at baseline, at post-treatment (6 months), and after a follow-up period of 12 months. The mediators will also be assessed at 3 months. The primary outcome is the level of suicidal ideation and behaviour. The secondary outcomes are anxiety and social performance, depression, core symptoms of ASD, quality of life, and cost-utility. Emotion regulation and therapeutic alliance are hypothesised to mediate the effects on the primary outcome. DISCUSSION: The results from this study will provide an evaluation of the efficacy of DBT treatment in persons with ASD on suicidal and self-harming behaviour. The study is conducted in routine mental health services which enhances the generalisability of the study results to clinical practice. TRIAL REGISTRATION: ISRCTN96632579. Registered 1 May 2019. Retrospectively registered.

Correction to: Stigma for common mental disorders in racial minorities and majorities a systematic review and meta-analysis.

An amendment to this paper has been published and can be accessed via the original article.

Stigma for common mental disorders in racial minorities and majorities a systematic review and meta-analysis.

BACKGROUND: There is a strong stigma attached to mental disorders preventing those affected from getting psychological help. The consequences of stigma are worse for racial and/or ethnic minorities compared to racial and/or ethnic majorities since the former often experience other social adversities such as poverty and discrimination within policies and institutions. This is the first systematic review and meta-analysis summarizing the evidence on the impact of differences in mental illness stigma between racial minorities and majorities. METHODS: This systematic review and meta-analysis included cross-sectional studies comparing mental illness stigma between racial minorities and majorities. Systematic searches were conducted in the bibliographic databases of PubMed, PsycINFO and EMBASE until 20th December 2018. Outcomes were extracted from published reports, and meta-analyses, and meta-regression analyses were conducted in CMA software. RESULTS: After screening 2787 abstracts, 29 studies with 193,418 participants (N = 35,836 in racial minorities) were eligible for analyses. Racial minorities showed more stigma than racial majorities (g = 0.20 (95% CI: 0.12 ~ 0.27) for common mental disorders. Sensitivity analyses showed robustness of these results. Multivariate meta-regression analyses pointed to the possible moderating role of the number of studies with high risk of bias on the effect size. Racial minorities have more stigma for common mental disorders when compared with majorities. Limitations included moderate to high risk of bias, high heterogeneity, few studies in most comparisons, and the use of non-standardized outcome measures. CONCLUSIONS: Mental illness stigma is higher among ethnic minorities than majorities. An important clinical implication of these findings would be to tailor anti-stigma strategies related with mental illnesses according to specific racial and/or ethnic backgrounds with the intention to improve mental health outreach.

Effectiveness of a Web-Based Self-Help Program for Suicidal Thinking in an Australian Community Sample: Randomized Controlled Trial.

BACKGROUND: Treatment for suicidality can be delivered online, but evidence for its effectiveness is needed. OBJECTIVE: The goal of our study was to examine the effectiveness of an online self-help intervention for suicidal thinking compared to an attention-matched control program. METHODS: A 2-arm randomized controlled trial was conducted with assessment at postintervention, 6, and, 12 months. Through media and community advertizing, 418 suicidal adults were recruited to an online portal and were delivered the intervention program (Living with Deadly Thoughts) or a control program (Living Well). The primary outcome was severity of suicidal thinking, assessed using the Columbia Suicide Severity Rating Scale. RESULTS: Intention-to-treat analyses showed significant reductions in the severity of suicidal thinking at postintervention, 6, and 12 months. However, no overall group differences were found. CONCLUSIONS: Living with Deadly Thoughts was of no greater effectiveness than the control group. Further investigation into the conditions under which this program may be beneficial is now needed. Limitations of this trial include it being underpowered given the effect size ultimately observed, a high attrition rate, and the inability of determining suicide deaths or of verifying self-reported suicide attempts. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12613000410752; https://www.anzctr.org.au/ Trial/Registration/TrialReview.aspx?id=364016 (Archived by WebCite at http://www.webcitation.org/6vK5FvQXy); Universal Trial Number U1111-1141-6595.

Evaluation of benefit to patients of training mental health professionals in suicide guidelines: cluster randomised trial.

BACKGROUND: Randomised studies examining the effect on patients of training professionals in adherence to suicide guidelines are scarce. AIMS: To assess whether patients benefited from the training of professionals in adherence to suicide guidelines. METHOD: In total 45 psychiatric departments were randomised (Dutch trial register: NTR3092). In the intervention condition, all staff in the departments were trained with an e-learning supported train-the-trainer programme. After the intervention, patients were assessed at admission and at 3-month follow-up. Primary outcome was change in suicide ideation, assessed with the Beck Scale for Suicide Ideation. RESULTS: For the total group of 566 patients with a positive score on the Beck Scale for Suicide Ideation at baseline, intention-to-treat analysis showed no effects of the intervention on patient outcomes at 3-month follow-up. Patients who were suicidal with a DSM-IV diagnosis of depression (n = 154) showed a significant decrease in suicide ideation when treated in the intervention group. Patients in the intervention group more often reported that suicidality was discussed during treatment. CONCLUSIONS: Overall, no effect of our intervention on patients was found. However, we did find a beneficial effect of the training of professionals on patients with depression.

Trajectories of Suicidal Ideation in People Seeking Web-Based Help for Suicidality: Secondary Analysis of a Dutch Randomized Controlled Trial.

BACKGROUND: Suicidal ideation (SI) is a common mental health problem. Variability in intensity of SI over time has been linked to suicidal behavior, yet little is known about the temporal course of SI. OBJECTIVE: The primary aim was to identify prototypical trajectories of SI in the general population and, secondarily, to examine whether receiving Web-based self-help for SI, psychiatric symptoms, or sociodemographics predicted membership in the identified SI trajectories. METHODS: We enrolled 236 people, from the general Dutch population seeking Web-based help for SI, in a randomized controlled trial comparing a Web-based self-help for SI group with a control group. We assessed participants at inclusion and at 2, 4, and 6 weeks. The Beck Scale for Suicide Ideation was applied at all assessments and was included in latent growth mixture modeling analysis to empirically identify trajectories. RESULTS: We identified 4 SI trajectories. The high stable trajectory represented 51.7% (122/236) of participants and was characterized by constant high level of SI. The high decreasing trajectory (50/236, 21.2%) consisted of people with a high baseline SI score followed by a gradual decrease to a very low score. The third trajectory, high increasing (12/236, 5.1%), also had high initial SI score, followed by an increase to the highest level of SI at 6 weeks. The fourth trajectory, low stable (52/236, 22.0%) had a constant low level of SI. Previous attempted suicide and having received Web-based self-help for SI predicted membership in the high decreasing trajectory. CONCLUSIONS: Many adults experience high persisting levels of SI, though results encouragingly indicate that receiving Web-based self-help for SI increased membership in a decreasing trajectory of SI.

Relationship of suicide rates with climate and economic variables in Europe during 2000-2012.

BACKGROUND: It is well known that suicidal rates vary considerably among European countries and the reasons for this are unknown, although several theories have been proposed. The effect of economic variables has been extensively studied but not that of climate. METHODS: Data from 29 European countries covering the years 2000-2012 and concerning male and female standardized suicidal rates (according to WHO), economic variables (according World Bank) and climate variables were gathered. The statistical analysis included cluster and principal component analysis and categorical regression. RESULTS: The derived models explained 62.4 % of the variability of male suicidal rates. Economic variables alone explained 26.9 % and climate variables 37.6 %. For females, the respective figures were 41.7, 11.5 and 28.1 %. Male suicides correlated with high unemployment rate in the frame of high growth rate and high inflation and low GDP per capita, while female suicides correlated negatively with inflation. Both male and female suicides correlated with low temperature. DISCUSSION: The current study reports that the climatic effect (cold climate) is stronger than the economic one, but both are present. It seems that in Europe suicidality follows the climate/temperature cline which interestingly is not from south to north but from south to north-east. This raises concerns that climate change could lead to an increase in suicide rates. The current study is essentially the first successful attempt to explain the differences across countries in Europe; however, it is an observational analysis based on aggregate data and thus there is a lack of control for confounders.

Protocol: Reducing suicidal ideation among Turkish migrants in the Netherlands and in the UK: effectiveness of an online intervention.

BACKGROUND: The Turkish community living in Europe has an increased risk for suicidal ideation and attempted suicide. Online self-help may be an effective way of engagement with this community. This study will evaluate the effectiveness of a culturally adapted, guided, cognitive behavioural therapy-based online self-help intervention targeting suicidal ideation for Turkish adults living in the Netherlands and in the UK. METHODS AND DESIGN: This study will be performed in two phases. First, the Dutch online intervention will be adapted to Turkish culture. The second phase will be a randomized controlled trial with two conditions: experimental and waiting-list control. Ethical approval has been granted for the trials in London and Amsterdam. The experimental group will obtain direct access to the intervention, which will take 6 weeks to complete. Participants in the waiting-list condition will obtain access to the modules after 6 weeks. Participants in both conditions will be assessed at baseline, post-test and 3 months post-test follow-up. The primary outcome measure is reduction in frequency and intensity of suicidal thoughts. Secondary outcome measures are self-harm, attempted suicide, suicide ideation attributes, depression, hopelessness, anxiety, quality of life, worrying and satisfaction with the treatment.

Relationship of suicide rates to economic variables in Europe: 2000-2011.

BACKGROUND: It is unclear whether there is a direct link between economic crises and changes in suicide rates. AIMS: The Lopez-Ibor Foundation launched an initiative to study the possible impact of the economic crisis on European suicide rates. METHOD: Data was gathered and analysed from 29 European countries and included the number of deaths by suicide in men and women, the unemployment rate, the gross domestic product (GDP) per capita, the annual economic growth rate and inflation. RESULTS: There was a strong correlation between suicide rates and all economic indices except GPD per capita in men but only a correlation with unemployment in women. However, the increase in suicide rates occurred several months before the economic crisis emerged. CONCLUSIONS: Overall, this study confirms a general relationship between the economic environment and suicide rates; however, it does not support there being a clear causal relationship between the current economic crisis and an increase in the suicide rate.

Improving communication and practical skills in working with inpatients who self-harm: a pre-test/post-test study of the effects of a training programme.

BACKGROUND: Differing perspectives of self-harm may result in a struggle between patients and treatment staff. As a consequence, both sides have difficulty communicating effectively about the underlying problems and feelings surrounding self-harm. Between 2009 and 2011, a programme was developed and implemented to train mental health care staff (nurses, social workers, psychologists, psychiatrists, and occupational therapists) in how to communicate effectively with and care for patients who self-harm. An art exhibition focusing on self-harm supported the programme. Lay experts in self-harm, i.e. people who currently harm themselves, or who have harmed themselves in the past and have the skills to disseminate their knowledge and experience, played an important role throughout the programme. METHODS: Paired sample t-tests were conducted to measure the effects of the training programme using the Attitude Towards Deliberate Self-Harm Questionnaire, the Self-Perceived Efficacy in Dealing with Self-Harm Questionnaire, and the Patient Contact Questionnaire. Effect sizes were calculated using r. Participants evaluated the training programme with the help of a survey. The questionnaires used in the survey were analysed descriptively. RESULTS: Of the 281 persons who followed the training programme, 178 completed the questionnaires. The results show a significant increase in the total scores of the three questionnaires, with large to moderate effect sizes. Respondents were positive about the training, especially about the role of the lay expert. CONCLUSION: A specialised training programme in how to care for patients who self-harm can result in a more positive attitude towards self-harm patients, an improved self-efficacy in caring for patients who self-harm, and a greater closeness with the patients. The deployment of lay experts is essential here.

Immigration and recommended care after a suicide attempt in Europe: equity or bias?

This report describes the investigation of care recommendations in the medical system across European countries to immigrants who attempted suicide. Data from seven European countries with 8865 local and 2921 immigrant person-cases were derived from the WHO/EURO Multicentre Study on Suicidal Behaviour and ensuing MONSUE (Monitoring Suicidal Behaviour in Europe) project. The relationship between immigrant status and type of aftercare recommended was analysed with binary logistic regression, adjusting for gender, age, method of attempt and the Centre collecting the data. Clear disparities were identified in the care recommendation practices toward immigrants, compared with hosts, over and above differing policies by the European Centres.

Unbearable suffering and requests for euthanasia prospectively studied in end-of-life cancer patients in primary care.

BACKGROUND: An international discussion about whether or not to legally permit euthanasia and (or) physician assisted suicide (EAS) is ongoing. Unbearable suffering in patients may result in a request for EAS. In the Netherlands EAS is legally permitted, and unbearable suffering is one of the central compulsory criteria. The majority of EAS is performed in cancer patients in the primary care practice. In around one in every seven end-of-life cancer patients dying in the primary care setting EAS is performed. The prevalence of unbearable symptoms and overall unbearable suffering in relationship to explicit requests for EAS was studied in a cohort of end-of-life cancer patients in primary care. METHODS: A prospective study in primary care cancer patients estimated to die within six months was performed. Every two months suffering was assessed with the State-of-Suffering V (SOS-V). The SOS-V is a comprehensive instrument for quantitative and qualitative assessment of unbearable suffering related to 69 physical, psychological and social symptoms in five domains. RESULTS: Out of 148 patients who were asked to participate 76 (51%) entered the study. The studied population were 64 patients who were followed up until death; 27% explicitly requested EAS, which was performed in 8% of the patients. The final interview per patient was analyzed; in four patients the SOS-V was missing. Unbearable symptoms were present in 94% of patients with an explicit request for EAS and in 87% of patients without an explicit request. No differences were found in the prevalence of unbearable suffering for physical, psychological, social and existential symptoms, nor for overall unbearable suffering, between patients who did or who did not explicitly request EAS. CONCLUSIONS: In a population of end-of-life cancer patients cared for in primary care no differences in unbearable suffering were found between patients with and without explicit requests for EAS. The study raises the question whether unbearable suffering is the dominant motive to request for EAS. Most patients suffered from unbearable symptoms, indicating that the compulsory criterion of unbearable suffering may be met a priori in most end-of-life cancer patients dying at home, whether they request EAS or not.

Applying computer adaptive testing to optimize online assessment of suicidal behavior: a simulation study.

BACKGROUND: The Internet is used increasingly for both suicide research and prevention. To optimize online assessment of suicidal patients, there is a need for short, good-quality tools to assess elevated risk of future suicidal behavior. Computer adaptive testing (CAT) can be used to reduce response burden and improve accuracy, and make the available pencil-and-paper tools more appropriate for online administration. OBJECTIVE: The aim was to test whether an item response-based computer adaptive simulation can be used to reduce the length of the Beck Scale for Suicide Ideation (BSS). METHODS: The data used for our simulation was obtained from a large multicenter trial from The Netherlands: the Professionals in Training to STOP suicide (PITSTOP suicide) study. We applied a principal components analysis (PCA), confirmatory factor analysis (CFA), a graded response model (GRM), and simulated a CAT. RESULTS: The scores of 505 patients were analyzed. Psychometric analyses showed the questionnaire to be unidimensional with good internal consistency. The computer adaptive simulation showed that for the estimation of elevation of risk of future suicidal behavior 4 items (instead of the full 19) were sufficient, on average. CONCLUSIONS: This study demonstrated that CAT can be applied successfully to reduce the length of the Dutch version of the BSS. We argue that the use of CAT can improve the accuracy and the response burden when assessing the risk of future suicidal behavior online. Because CAT can be daunting for clinicians and applied scientists, we offer a concrete example of our computer adaptive simulation of the Dutch version of the BSS at the end of the paper.

Symptoms of a feather flock together? An exploratory secondary dynamic time warp analysis of 11 single case time series of suicidal ideation and related symptoms.

Suicidal ideation fluctuates over time, as does its related risk factors. Little is known about the difference or similarities of the temporal patterns. The current exploratory secondary analysis examines which risk symptoms have similar time dynamics using a mathematical algorithm called dynamic time warping (DTW). Ecological momentary assessment data was used of 11 depressed psychiatric outpatients with suicidal ideation who answered three daytime surveys at semi-random sampling points for a period of three to six months. Patients with 45 assessments or more were included. Results revealed significant inter-individual variability in symptom dynamics and clustering, with certain symptoms often clustering due to similar temporal patterns, notably feeling sad, hopelessness, feeling stuck, and worrying. The directed network analyses shed light on the temporal order, highlighting entrapment and worrying as symptoms strongly related to suicide ideation. Still, all patients also showed unique directed networks. While for some patients changes in entrapment directly preceded change in suicide ideation, the reverse temporal ordering was also found. Relatedly, within some patients, perceived burdensomeness played a pivotal role, whereas in others it was unconnected to other symptoms. The study underscores the individualized nature of symptom dynamics and challenges linear models of progression, advocating for personalized treatment strategies.

Gender distribution of suicide attempts among immigrant groups in European countries--an international perspective.

BACKGROUND: Studies report high rates of suicide attempts for female immigrants. This study assesses variations in the distribution of suicide attempts across gender in immigrant and non-immigrant groups in Europe. METHOD: Data on 64 native and immigrant groups, including 17,662 local and 3755 immigrant person-cases collected, between 1989 and 2003, in 24 million person-years were derived from the WHO/EURO Multicentre Study on Suicidal Behaviour. Female-to-male ratios of suicide attempt rates (SARs) were calculated for all groups. RESULTS: The cases were combined into four major categories: hosts; European and other Western immigrants; non-European immigrants; and Russian immigrants. The non-European immigrants included higher female SARs than the Europeans, both hosts and immigrants. Unlike the other groups, the majority of suicide attempters among the Russian immigrants in Estonia and Estonian hosts were male. This was also true for immigrants from Curaçao, Iran, Libya and Sri Lanka. When the single groups with a male majority were excluded, the correlation between female and male SARs was relatively high among the European immigrants (r = 0.74, P < 0.0005) and lower among the non-European immigrants (r = 0.55, P < 0.03). Generalized estimating equation analysis yielded a highly significant difference (P < 0.0005) in gender ratios of suicide attempts between hosts (ratio 1.52) and both non-European immigrants (ratio 2.32) and Russian immigrants (0.68), but not the European immigrants. CONCLUSIONS: The higher suicide attempt rates in non-European immigrant females compared with males may be indicative of difficulties in the acculturation processes in Europe. Further understanding of factors underlying suicidal behaviour in immigrant and minority groups is necessary for planning effective prevention strategies.

Symptoms, unbearability and the nature of suffering in terminal cancer patients dying at home: a prospective primary care study.

BACKGROUND: Primary care physicians provide palliative home care. In cancer patients dying at home in the Netherlands (45% of all cancer patients) euthanasia in about one out of every seven patients indicates unbearable suffering. Symptom prevalence, relationship between intensity of symptoms and unbearable suffering, evolvement of symptoms and unbearability over time and quality of unbearable suffering were studied in end-of-life cancer patients in primary care. METHODS: 44 general practitioners during three years recruited cancer patients estimated to die within six months. Every two months patients quantified intensity as well as unbearability of 69 symptoms with the State-of-Suffering-V (SOS-V). Also overall unbearable suffering was quantified. The five-point rating scale ranged from 1 (not at all) to 5 (hardly can be worse). For symptoms assessed to be unbearable the nature of the suffering was additionally investigated with open-ended questions. The final interviews were analyzed; for longitudinal evolvement also the pre-final interviews were analyzed. Symptom intensity scores 4 and 5 were defined to indicate high intensity. Symptom unbearability scores 4 and 5 were defined to indicate unbearable suffering. Two raters categorized the qualitative descriptions of unbearable suffering. RESULTS: Out of 148 requested patients 51% participated; 64 patients were followed up until death. The SOS-V was administered at least once in 60 patients (on average 30 days before death) and at least twice in 33 patients. Weakness was the most frequent unbearable symptom (57%). Pain was unbearable in 25%. Pain, loss of control over one's life and fear of future suffering frequently were unbearable (89-92%) when symptom intensity was high. Loss of control over one's life, vomiting and not being able to do important things frequently were unbearable (52-80%) when symptom intensity was low. Unbearable weakness significantly increased between pre-final and final interview. Physical suffering, loss of meaning, loss of autonomy, experiencing to be a burden, fear of future suffering and worrying more frequently occurred in patients suffering unbearably overall. CONCLUSIONS: Weakness was the most prevalent unbearable symptom in an end-of-life primary care cancer population. Physical suffering, loss of meaning and loss of autonomy more frequently occurred in patients who suffered unbearably overall.