Internet-delivered cognitive behavioural therapy for insomnia disorder in depressed patients treated at an outpatient clinic for mood disorders: protocol of a randomised controlled trial.

BACKGROUND: Major depression is a highly prevalent disorder causing severe personal distress, and high societal costs. Patients with depression often have comorbid insomnia disorder (ID) leading to even worse personal distress and worse treatment outcomes. Recent results from a non-randomised pilot study with internet-delivered Cognitive Behavioural Therapy (CBTi) for Insomnia (I-Sleep) added to regular depression care were promising regarding feasibility and initial effects on insomnia complaints and depression. However, no randomised controlled trial (RCT) has been performed yet to access the (cost-) effectiveness of I-Sleep for depression. Therefore, this protocol article presents the design of an RCT aimed to assess the (cost-) effectiveness of I-Sleep in addition to usual care for depression compared to usual care alone in depressed patients with a comorbid Insomnia Disorder (ID) treated at outpatient clinics for mood disorders.  METHODS /DESIGN: This is a multi-centre RCT with measurements at baseline and at 3, 6, 9, and 12 months of follow-up. Patients with depression and an ID are randomised to either I-Sleep treatment followed by regular depression care or to regular depression care alone. Our aim is to recruit one hundred and seventy-five patients from multiple outpatient clinics for mood disorders. The primary outcome is the change in depressive symptoms over 12 months of follow-up measured with the Patient Health Questionnaire (PHQ-9). Secondary outcomes are recovery from depression (PHQ-9), insomnia severity (Insomnia Severity Index, ISI), daily functioning (Work and Social Adjustment Scale, WSAS), general quality of life (EuroQol 5-level version, EQ-5D-5L), and societal costs (Adapted versions of the iMTA Productivity Cost Questionnaire, iPCQ and iMTA Medical Cost Questionnaire, iMCQ). DISCUSSION: We hypothesize that the addition of I-Sleep to usual care will result in a significant improvement in depression treatment outcomes and quality of life as well as a decrease in healthcare and societal costs compared to usual care alone. This study is the first pragmatic RCT evaluating the effectiveness and cost-effectiveness of adding CBTi to usual care for depression. TRIAL REGISTRATION: Netherlands Trial Register (NL8955). Registered on October 6th2020. https://trialsearch.who.int/Trial2.aspx?TrialID=NL8955.

[Shared decision-making using outcome information: qualitative research among patients]. / Samen beslissen met ROM als informatiebron: kwalitatief onderzoek onder cliënten.

BACKGROUND: In the period 2019-2022, eight mental health care organizations have been working on the development and implementation of shared decision-making (SDM) using routine outcome monitoring (ROM) as a source of information. AIM: To obtain insight in needs and experiences of patients among SDM using ROM, and to investigate which implementation approach this requires. METHOD: Explorative, qualitative research consisting of semi-structured interviews and focusgroups with patients (n = 101) treated by mental health care organizations across the Netherlands. RESULTS: Patients reported SDM as important. Generic aspects (listening, trust, complete information and equal input) and customization (connecting to the need for help, and for every decision meta-communication about the roles of patients, relatives and clinicians and the way of giving information) were equally important. Patients valued ROM as source of information during SDM, providing that questionnaires are not too long, are related to the problems and results are discussed. CONCLUSION: SDM using ROM is as yet not widely implemented in mental health care. This requires continuous stimulation and evaluation. Implementation requires (re)training clinicians and supporting patients by relatives, peer experts and psycho-education. Patients appreciate ROM as an aid in SDM; access to their own ROM is helpful here.

Individual placement and support and employment in personality disorders: a registry based cohort study.

BACKGROUND: To explore the relative impact of Individual Placement and Support (IPS) in patients with personality disorders (PDs) as compared to patients with other mental disorders. METHODS: Data from the Dutch Employee Insurance Agency of participants enrolled in a national IPS trajectory between 2008 and 2018 were linked to corresponding data on employment outcomes, diagnostic and sociodemographic information from Statistics Netherlands. This resulted in a sample of 335 participants with PDs who could be compared with 1073 participants with other mental disorders. RESULTS: Participants with PD just as often found competitive employment as participants with other mental disorders (37.6% vs. 38.0%, ORadjusted = 0.97, 95% confidence interval (CI) 0.74 to 1.27). The median time to gaining employment for those gaining employment (37.9%) was 195.5 days (mean number of days 252.5) in the PD group and 178.5 days (mean number of days 234.6) in the other mental disorders group (HRadjusted = 0.95, 95% CI 0.77 to 1.18). Also, total number of hours paid for competitive employment did not differ significantly between groups (median hours 686.5 vs 781.5, IRRadjusted = 0.85 95% CI 0.69 to 1.05). CONCLUSIONS: Based on this study, which includes the largest sample of patients with PDs in any published IPS study, IPS seems to result in an equal percentage of patients with PDs and other mental disorders, gaining and maintaining employment. Although future studies should determine whether PD-specific adaptations to IPS are useful, our findings indicate that IPS could be an effective way to increase employment outcomes in PDs. This is important because the enormous societal costs of PDs are largely driven by loss of economic productivity, and because clinical recovery in PDs is suggested to be enhanced when patients are employed.

Violent victimization and revictimization in patients with depressive disorders: context characteristics, disclosure rates, and gender differences.

BACKGROUND: Depressed patients are prone to violent victimization, and patients who were victimized once are at increased risk to fall victim to violence again. However, knowledge on the context of victimization in depressed patients is lacking, and research identifying targets for prevention is urgently needed. METHODS: This cross-sectional study explored context characteristics, disclosure rates and gender differences regarding violent victimization in 153 recently victimized depressed patients. Additionally, 12-month prevalence rates of repeat threat, physical assault, and sexual assault were examined, and gender differences were investigated using t-tests, Chi-square tests, and Fisher's exact tests. Furthermore, logistic regression analyses were used to identify factors associated with repeat victimization. RESULTS: Overall, depressed men were most often victimized by a stranger in public, and women by their partner or ex-partner at home. Regarding sexual assault, no gender differences could be examined. Patients were sexually assaulted most often by an acquaintance (50.0%) or stranger (27.8%). In all patients, the most recent incidents of threat (67.6%) and physical assault (80.0%) were often preceded by a conflict, and only a minority had been intoxicated prior to the assault. Notably, less than half of patients had disclosed their recent experience of threat (40.6%) and physical assault (47.1%) to their mental health caregiver. For sexual assault, this was only 20%. Less than one third of patients had reported their recent experience of threat (27.9%), physical assault (30.0%) and sexual assault (11.1%) to the police. 48.4% of patients had been victimized repeatedly in the past year, with no gender differences found. Only depressive symptoms and unemployment were univariately associated with repeat victimization, but not in the multiple model. CONCLUSIONS: The high prevalence of repeat victimization in depressed patients and their low disclosure rates stress the need to implement routine enquiry of victimization in mental health care, and to develop preventive interventions accounting for specific needs of men and women.

[Het spook risicoselectie; ggz onverzekerbaar in huidig stelsel]. / Het spook risicoselectie; ggz onverzekerbaar in huidig stelsel.

BACKGROUND: The Dutch health care system is a hybrid mix of public and market oriented elements. The market orientation harbours strong financial incentives for health insurance companies to select for the most healthy, least costly insurees. This is countered by an elaborate financial compensation for high risk, more costly health care users. Dysfunctioning of the compensatory financial mechanisms would render the mental health sector uninsurable. AIM: To test the risk-compensatory mechanisms for mental health care in the Netherlands and to discuss consequences of malfunctioning. METHOD: We used governmental data to study: the distribution of mental health costs, the total mental health expenditures that are redirected to compensate insurance companies, and the accuracy of this compensation. The consequences of putative inaccuracies are discussed. RESULTS: 0.8% of the insured (all Dutch citizens are insured) are responsible for 66% of the mental health care costs. To compensate insurance companies for unequal distribution of costs, 3.9 billion euros were redirected. This compensation is based on inaccurate predictions of future health care costs of individual patients. The consequence is that insurance companies run a loss on every patient that uses mental health care. This loss is directly proportional to the amount of care used and therefore highest in patients with severe mental illness. CONCLUSION: Due to inaccurate redirection of mental health-care costs, a strong financial incentive is in place to avoid investing in mental health care. Under prevailing regulations, mental health is de facto uninsurable in the Netherlands. This affects especially patients with the most severe and complex mental illness.

Affect fluctuations examined with ecological momentary assessment in patients with current or remitted depression and anxiety disorders.

BACKGROUND: There is increasing interest in day-to-day affect fluctuations of patients with depressive and anxiety disorders. Few studies have compared repeated assessments of positive affect (PA) and negative affect (NA) across diagnostic groups, and fluctuation patterns were not uniformly defined. The aim of this study is to compare affect fluctuations in patients with a current episode of depressive or anxiety disorder, in remitted patients and in controls, using affect instability as a core concept but also describing other measures of variability and adjusting for possible confounders. METHODS: Ecological momentary assessment (EMA) data were obtained from 365 participants of the Netherlands Study of Depression and Anxiety with current (n = 95), remitted (n = 178) or no (n = 92) DSM-IV defined depression/anxiety disorder. For 2 weeks, five times per day, participants filled-out items on PA and NA. Affect instability was calculated as the root mean square of successive differences (RMSSD). Tests on group differences in RMSSD, within-person variance, and autocorrelation were performed, controlling for mean affect levels. RESULTS: Current depression/anxiety patients had the highest affect instability in both PA and NA, followed by remitters and then controls. Instability differences between groups remained significant when controlling for mean affect levels, but differences between current and remitted were no longer significant. CONCLUSIONS: Patients with a current disorder have higher instability of NA and PA than remitted patients and controls. Especially with regard to NA, this could be interpreted as patients with a current disorder being more sensitive to internal and external stressors and having suboptimal affect regulation.

[Suicide prevention: challenges and recommendations]. / Suïcidepreventie: uitdagingen en aanbevelingen.

Background DESPITE VARIOUS NATIONAL INITIATIVES AND A STRONG MENTAL HEALTH CARE SYSTEM, THE NUMBER OF SUICIDES IN THE NETHERLANDS AND FLANDERS HAS NOT CHANGED AS HOPED. Aim TO PROVIDE INSIGHT INTO THE CURRENT SUICIDE PREVENTION POLICY IN THE NETHERLANDS AND FLANDERS, AND THE EVIDENCE ON THEIR EFFECTIVENESS. Method DISCUSSION OF UNIVERSAL, SELECTIVE AND INDICATED PREVENTION INITIATIVES, AND OF THE EVIDENCE FOR THE VARIOUS INITIATIVES, BASED ON THE USE OF REVIEWS AND META-ANALYSIS. Results THERE IS A NATIONAL SUICIDE PREVENTION AGENDA IN BOTH THE NETHERLANDS AND FLANDERS. IT IS DIFFICULT TO DEMONSTRATE THE DIRECT EFFECT OF THE VARIOUS INITIATIVES ON NATIONAL SUICIDE RATES, BECAUSE OF THE LOW BASE RATE, AND BECAUSE OF ITS MULTIPLE CAUSES. Conclusion THERE ARE LITTLE EVIDENCE FOR SUICIDE PREVENTION STRATEGIES. THIS DOES NOT MEAN SUICIDE PREVENTION HAS NO USE, BUT MODESTY SEEMS IN PLACE. Key words EVALUATION, POLICY, RCT, SUICIDE PREVENTION TIJDSCHRIFT VOOR PSYCHIATRIE 63(2021)2, 133-137.

Mastery and self-esteem mediate the association between visual acuity and mental health: a population-based longitudinal cohort study.

BACKGROUND: With deteriorating eyesight, people often become dependent on others for many aspects of their daily lives. As a result, they feel less 'in control' and experience lower self-esteem. Lower sense of mastery and self-esteem are known to predict depression, but their roles in people with visual impairment have only marginally been investigated. Therefore, this study aimed to determine the influence of mastery and self-esteem on the relationship between visual acuity and mental health. METHODS: A longitudinal cohort study was performed using data from the Longitudinal Aging Study Amsterdam (LASA), collected between 2001 and 2012. A community-based population of 2599 older adults were included, who were randomly selected from population registers. Outcomes of interest were the Pearlin Mastery Scale, Rosenberg Self-Esteem Scale, Center for Epidemiologic Studies - Depression scale and the Hospital Anxiety Depression Scale - Anxiety subscale. Linear mixed models were used to establish the association between visual acuity and mental health over time. RESULTS: Mean age was 72 years, 56% was female and 1.2% qualified as having low vision. Visual impairment was associated with a lower sense of mastery (ß = - 0.477, p < 0.001), lower self-esteem (ß = - 0.166, p = 0.008) and more depression (ß = 0.235, p < 0.001). No significant association between visual acuity and anxiety was found. The relationship between visual acuity and depression was mediated by self-esteem (25%) and sense of mastery (79%). CONCLUSIONS: Vision loss was associated with depression. This association was mediated by self-esteem and sense of mastery. This provides us with new possibilities to identify, support and treat those at risk for developing depression by aiming to increase their self-esteem and sense of mastery.

Employment in Personality Disorders and the Effectiveness of Individual Placement and Support: Outcomes from a Secondary Data Analysis.

Purpose Personality disorders (PDs) are associated with severe functional impairment and subsequent high societal costs, increasing the need to improve occupational functioning in PD. Individual placement and support (IPS) is an effective, evidence-based method of supported employment, which so far has been tested in various mixed patient populations with severe mental illness (SMI, including PDs). However, the effectiveness of IPS for PDs per se remains uninvestigated. Methods Data from the SCION trial were used, including 31 SMI patients with PDs and 115 SMI patients with other primary diagnoses (primarily psychotic disorders). First, the interaction effect of diagnosis (PD vs other SMI) and intervention (IPS vs traditional vocational rehabilitation) was studied. Second, in the IPS condition, difference between diagnostic groups in time to first job was studied. Results We did not find evidence of a moderating effect of PD diagnosis on the primary effect of IPS (proportion who started in regular employment) (OR = 0.592, 95% CI 0.80-4.350, p = 0.606) after 30 months. Also, PD diagnosis did not moderate the effect of time until first job in IPS. Conclusions From the present explorative analysis we did not find evidence for a moderating effect of PD diagnosis on the effectiveness of IPS among PD participants. This indicates that IPS could be as effective in gaining employment in participants with PD as it is in participants with other SMI. Future studies, implementing larger numbers, should confirm whether IPS is equally effective in PDs and study whether augmentations or alterations to the standard IPS model might be beneficiary for PD.

[Social isolation, source of income and healthcare consumption for psychiatric patients with and without severe mental illness]. / Sociaal isolement en ggz-gebruik bij patiënten met een ernstige psychische aandoening.

BACKGROUND: The more severe the psychiatric illness the more patients are dependent on social support and informal care. However, research showed that patients with severe mental illness (smi) have smaller networks than healthy controls.
AIM: To examine the relationship between network size and perceived social support on the one hand and healthcare consumption on the other.
METHOD: A group of 252 patients who got a crisis consultation in Amsterdam, was divided into patients with and without smi on the basis of two years of observation. Mental healthcare consumption was then measured over a period of three years. Bi- and multivariate analyses were used to determine which variables predict levels of mental healthcare consumption.
RESULTS: Both patient groups did not show any change in level of care consumption during the three follow-up years. In both smi patients and other patients, mental healthcare consumption increased with smaller network size (or 0,85; 95% ci 0,75-0,96). Patients with smi showed a more than threefold higher care consumption compared to non-smi patients (or 3.19; 95% ci 1.82-5.61) independent of network size and living situation.
CONCLUSION: smi patients live in conditions that undermine self-reliance: they have a small social network, they often live alone and they usually depend on welfare benefits. They also consume considerably more care than patients with milder disorders and this level of consumption did not decline during the three years of follow-up. A development of new social interventions will be needed to make this patient group more self-reliant and less dependent on care.

[Shared decision making in mental health care; evaluation of the added value for patients and clinicians]. / Samen beslissen in de ggz; onderzoek naar toegevoegde waarde voor patiënten en behandelaars.

BACKGROUND: Although the evidence is expanding, in mental health care shared decision making (SDM) is not widely applied. Moreover, little is known about the use of routine outcome monitoring (ROM) and eHealth in SDM.
AIM: PhD research on the added value of SDM using ROM and eHealth for patients and clinicians in mental health care.
METHOD: Three studies: 1. a literature research and a cross-sectional study on decisional conflict; 2. ROM implementation research and a cluster randomised trial on shared decision making using ROM (Breakthrough program); 3. a cluster randomised trial on shared decision making during the intake (regional).
RESULTS: The interventions did not lead to reduced decisional conflict for all patient groups. Decisional conflict gives insight into the patient's perspective on the quality of the decision making process and decisions being made. Only patients with depression, who participated in the national trial, reported less decisional conflict. This trial did not show a higher level of SDM, but did show increased usage of rom in clinical practice. Although the regional trial showed no results on decisional conflict, the application of SDM and treatment outcomes improved.
CONCLUSION: SDM in mental health care needs further improvement. We recommend investigating how to support patients better, taking into account the role that suits them.

[Psychiatric diagnosis: personalised by definition]. / Psychiatrische diagnostiek: per definitie gepersonaliseerd.

BACKGROUND: Personalised psychiatry requires a psychiatric diagnosis which aims to determine the causes of the mental disorder and the context within which it has developed, including the factors of most importance for the choice of an appropriate treatment. AIM: To show that psychiatric diagnosis is personalised by definition. METHOD: Description of the differences between psychiatric classification and psychiatric diagnosis, including a discussion of symptom network diagnosis and diagnosis of meaningful connections. RESULTS: It appears from references from classical and recent psychiatric textbooks and from the recent Dutch Guideline for psychiatric evaluation that psychiatric diagnosis, different from classification, has always been aimed at determining both biological and psychosocial etiological and pathogenic factors and factors influencing the course and the treatment of the disorder. CONCLUSION: A personalised approach in psychiatry may lead to a direly necessary reappraisal of psychiatric diagnosis that is not limited to the classification of symptoms, but that aims specifically towards explaning and understanding mental illness.

[Personalised diagnosis and treatment of depression]. / Personalised diagnostiek en behandeling van depressie.

BACKGROUND: It is often said that a patient with depression can derive considerable benefit from personalised diagnostics and treatment.
AIM: To find out whether we have enough data to demonstrate that personalised diagnostics and personalised treatment of depression are better than what we do now and, if so, what specific action we should take.
METHOD: We review the literature on the foregoing topic.
RESULTS: There is ample evidence to support the view that the efficacy of treatment may improve quite dramatically if we are able to diagnose with much greater precision and select a treatment that is best suited to an individual person. Although there is less empirical evidence available with regard to a system that makes use of short regular feedback of unique personal data of patients and of the personal input of the professionals involved, these factors may nevertheless improve efficacy still further.
CONCLUSION: Although no hard evidence is available so far, for instance as a result of trials, there is sufficient evidence to support the further development of personalised diagnostics and personalised treatment of depression.

[Personalised prevention of mental disorder]. / Personaliseren van preventie van psychische stoornissen.

BACKGROUND: The prevention of mental disorders is feasible, but a broader implementation requires a more precise application of available interventions to target populations.
AIM: A literature review of the different approaches where preventive measures are applied more precisely and personally.
METHOD: A narrative review of existing literature.
RESULTS: Several promising strategies to improve precision and personalisation of prevention are indeed available, but there is insufficient research to substantiate them.
CONCLUSION: Prevention of mental health disorders is possible, and there are interventions proven to be effective. In order to have an actual impact at population level, we require a mix of universal, selective and indication-based preventive measures. The universal campaigns, aimed at the entire population, would hereby create conditions enabling the other strategies, aimed at risk groups, to succeed.

[Providing insight into the construct decisional conflict and its usability to assess shared decision making]. / Het begrip 'beslissingsambivalentie' (decisional conflict) en de bruikbaarheid ervan bij de evaluatie van gedeelde besluitvorming.

BACKGROUND: The increased attention for shared decision making (sdm) in mental health care creates a need to evaluate its application. The construct decisional conflict, which refers to the satisfaction of patients regarding both the decision making process and the decisions made, could be of added value.
AIM: Clarifying decisional conflict and reflecting on its feasibility to evaluate sdm in mental health care.
METHOD: A literature study exploring the construct of decisional conflict was conducted, followed by a translation of the results into a visual model.
RESULTS: Decisional conflict is a multi-dimensional construct and consists of factors influencing the decision making process (information, support, values clarity), level of uncertainty concerning the options and the quality of the decision making. Decisional conflict can be illustrated by using a model and assessed with the Decisional Conflict Scale.
CONCLUSION: Decisional conflict is informative and useful in the evaluation of the application of sdm and improvement of the quality of the decision making in mental health care as well. This is of importance since patients who experienced less decisional conflict are more engaged in treatment and show better clinical outcomes.

Age-related variability in the presentation of symptoms of major depressive disorder.

BACKGROUND: The heterogeneous aetiology of major depressive disorder (MDD) might affect the presentation of depressive symptoms across the lifespan. We examined to what extent a range of mood, cognitive, and somatic/vegetative depressive symptoms were differentially present depending on patient's age. METHOD: Data came from 1404 participants with current MDD (aged 18-88 years) from two cohort studies: the Netherlands Study of Depression and Anxiety (NESDA) and the Netherlands Study of Depression in Older Persons (NESDO). Associations between age (per 10 years) and 30 depressive symptoms as well as three symptom clusters (mood, cognitive, somatic/vegetative) were assessed using logistic and linear regression analyses. RESULTS: Depression severity was found to be stable with increasing age. Nevertheless, 20 (67%) out of 30 symptoms were associated with age. Most clearly, with ageing there was more often early morning awakening [odds ratio (OR) 1.47, 95% confidence interval (CI) 1.36-1.60], reduced interest in sex (OR 1.42, 95% CI 1.31-1.53), and problems sleeping during the night (OR 1.33, 95% CI 1.24-1.43), whereas symptoms most strongly associated with younger age were interpersonal sensitivity (OR 0.72, 95% CI 0.66-0.79), feeling irritable (OR 0.73, 95% CI 0.67-0.79), and sleeping too much (OR 0.75, 95% CI 0.68-0.83). The sum score of somatic/vegetative symptoms was associated with older age (B = 0.23, p < 0.001), whereas the mood and cognitive sum scores were associated with younger age (B = -0.20, p < 0.001; B = -0.04, p = 0.004). CONCLUSIONS: Depression severity was found to be stable across the lifespan, yet depressive symptoms tend to shift with age from being predominantly mood-related to being more somatic/vegetative. Due to the increasing somatic presentation of depression with age, diagnoses may be missed.

Light therapy: is it safe for the eyes?

OBJECTIVE: Light therapy has become an increasingly popular treatment for depression and a range of other neuropsychiatric conditions. Yet, concerns have been raised about the ocular safety of light therapy. METHOD: We conducted the first systematic review into the ocular safety of light therapy. A PubMed search on January 4, 2017, identified 6708 articles, of which 161 were full-text reviewed. In total, 43 articles reporting on ocular complaints and ocular examinations were included in the analyses. RESULTS: Ocular complaints, including ocular discomfort and vision problems, were reported in about 0% to 45% of the participants of studies involving light therapy. Based on individual studies, no evident relationship between the occurrence of complaints and light therapy dose was found. There was no evidence for ocular damage due to light therapy, with the exception of one case report that documented the development of a maculopathy in a person treated with the photosensitizing antidepressant clomipramine. CONCLUSION: Results suggest that light therapy is safe for the eyes in physically healthy, unmedicated persons. The ocular safety of light therapy in persons with preexisting ocular abnormalities or increased photosensitivity warrants further study. However, theoretical considerations do not substantiate stringent ocular safety-related contraindications for light therapy.

Demographic and need factors of early, delayed and no mental health care use in major depression: a prospective study.

BACKGROUND: Despite the availability of evidence based treatments, many people with major depression receive no or delayed professional treatment, which may put them at risk for adverse outcomes. The aim of this study was to examine which demographic and need factors distinguish early, delayed and no treatment use. METHODS: Data were obtained from the Netherlands Mental Health Survey and Incidence Study-2 (NEMESIS-2). People with a diagnosis of major depression in the past 12 months were included (N = 434). Mental health care use was assessed during this same period and at follow up (three years later). Multinomial regression analysis was used to distinguish early, delayed and no mental health care users with respect to demographic and need factors. RESULTS: The majority of participants accessed treatment early (62%). Early treatment users were characterized by more severe and persistent symptoms and were more likely not to have a partner compared to no treatment users. The majority of those without treatment reached remission in three years (85%). Delayed treatment users were, compared to early users, characterized by relatively mild symptoms and a persistent or new major depressive disorder at follow up. CONCLUSIONS: Early access to treatment and the finding that need factors determine mental health care use among people with depression show that the filters along the pathway to treatment are not influenced by unfavorable determinants like education or age.

Help-seeking behaviour of patients with haematological malignancies treated with autologous stem cell transplantation.

Patients with haematological malignancies undergoing autologous stem cell transplantation face a life-threatening illness and stressful treatment. Although many patients report problems, relatively few patients report a need for additional professional care after treatment. We aimed to gain insight into the factors underlying this discrepancy by exploring patients' needs and help-seeking behaviour in relation to their experienced symptoms and problems. A qualitative research design following the grounded theory approach was used. Twenty patients, treated with autologous stem cell transplantation in the past 2 years, participated in an individual semi-structured interview. Factors contributing to patients' help-seeking behaviour were derived from our data and ordered in the following categories: (1) transition from symptoms to problems; (2) preference for dealing with problems themselves and with help from relatives; (3) problem categories and coping strategies; and (4) motives for (not) bringing in professional help. We concluded that the mere presence of a symptom does not lead to help-seeking behaviour: this relationship is modified by patients' personal goals, future perspective and phase of recovery. Patients seem to prefer to deal with problems without professional care. Patients' actual appeal for professional care depends on their coping strategies, social network and knowledge of available care.