Disease Specific Quality of Life in Keratinocyte Cancer; The development and use of the BaSQoL questionnaire

Keratinocyte cancer is the collective name of the two most common forms of skin cancer, namely basal cell carcinoma and squamous cell carcinoma. This dissertation describes how we have developed a questionnaire to measure disease-specific quality of life in people with keratinocyte cancer. We also extensively tested the questionnaire (named BaSQoL), translated it into English, tested the English version and used it to measure the impact of kera

Cognitive behavioral therapy for prolonged grief in children and adolescents:A randomized clinical trial

Objective: Prolonged Grief Disorder (PGD) was newly included in ICD-11 and resembles Persistent Complex Bereavement Disorder (PCBD) newly included in DSM-5. In adults, PGD can be successfully treated using cognitive behavioral therapy (CBT). There is no evidence yet that CBT interventions can successfully alleviate PGD in children and adolescents. The goal of this randomized clinical trial was to examine the effects of CBT for PGD in children and adolescents (named “CBT Grief-Help”) in comparison with the effects of non-directive supportive counselling. Methods: One hundred and thirty four children and adolescents with PGD (aged M=13.10 (SD=2.84, range 8-18) years, bereaved M=37.79 (SD=36.23, range 4-188) months earlier) were randomized to receive either CBT Grief-Help (n=74) or supportive counselling (n=60). Both treatment conditions encompassed nine individual sessions with children/adolescents paralleled by five sessions counselling with parents/caretakers. Children/adolescents completed measures of PGD, depression, and posttraumatic stress disorder (PTSD), and their parents/caretakers completed measures of their children’s problem behavior, before treatment, immediately after treatment, and three-, six-, and twelve-months following treatment. Results: Both treatments yielded moderate to large effect sizes across PGD and most other outcome measures. Compared to supportive counseling, CBT Grief-Help resulted in significantly greater reductions PGD-symptoms at all post-treatment assessments, and more successfully alleviated depression, PTSD, and internalizing problems six- and twelve-months following treatment. Conclusions: PGD and accompanying symptoms in bereaved children and adolescents can be effectively treated using CBT interventions. The superior long-term effects of CBT Grief-Help relative to supportive counselling suggest that this treatment successfully harnesses children and adolescents to the challenges faced after loss

Psychometric Properties of the Grief Cognitions Questionnaire for Children (GCQ-C)

Negative thinking is seen as an important mediating factor in the development of prolonged grief disorder (PGD), a syndrome encompassing debilitating symptoms of grief. No measure of specific grief related cognitions is available yet. Based on an adult measure of negative thinking in adults we developed a questionnaire for children, the Grief Cognitions Questionnaire for Children (GCQ-C). This study investigated several psychometric properties of the GCQ-C. Both reliability and validity were investigated in this study, in which hundred fifty-one children and adolescents (aged 8–18 years) participated. Findings showed that items of the GCQ-C represented one underlying dimension. Furthermore, the internal consistency and temporal stability were found to be adequate. Third, the findings supported the concurrent validity (e.g., significant positive correlations with self-report indices of PGD, depression and posttraumatic stress disorder), convergent and divergent validity of the GCQ-C. This study provides further evidence for the importance of negative thinking in PGD in children and adolescents

Comparison of DSM-5 criteria for persistent complex bereavement disorder and ICD-11 criteria for prolonged grief disorder in help-seeking bereaved children

BackgroundPersistent complex bereavement disorder (PCBD) is a disorder of grief that newly entered DSM-5. Prolonged grief disorder (PGD) is a disorder of grief included in ICD-11. No prior studies examined and compared the dimensionality, prevalence, and concurrent validity of both conditions among bereaved children.MethodsWith data from 291 help-seeking bereaved 8-–18 year old children, we used confirmatory factor analysis to evaluate the fit of different factor models for PCBD and PGD. In addition, we determined diagnostic rates for probable PCBD and PGD and calculated associations of PCBD and PGD caseness with concurrently assessed symptoms of overall disturbed grief, depression, posttraumatic stress, and parent-rated problem behavior.ResultsFor PCBD and PGD, one-factor models—with all symptoms forming a unidimensional factor of disturbed grief—fit the data best. The prevalence of probable DSM-5 PCBD (3.4%) was significantly lower than ICD-11 PGD (12.4%). Both PCBD and PGD were significantly associated with concurrently assessed overall disturbed grief, depression, and posttraumatic stress; associations with parent-rated problems were moderate.LimitationsFindings were based on self-reported ratings of symptoms, obtained from three different scales not specifically designed to assess PCBD and PGD. The use of a help-seeking sample limits the generalization of findings to bereaved children generally.ConclusionsFindings support the validity of DSM-5 PCBD and ICD-11 PGD. Prevalence rates of both constructs differ. This needs further scrutiny

The effectiveness of Grief-Help, a cognitive behavioural treatment for prolonged grief in children: study protocol for a randomised controlled trial

BACKGROUND: There is growing recognition of a syndrome of disturbed grief referred to as prolonged grief disorder (PGD). PGD is mostly studied in adults, but clinically significant PGD symptoms have also been observed in children and adolescents. Yet, to date no effective treatment for childhood PGD exists. The aims of this study are: (1) to investigate the effectiveness of Grief-Help, a nine-session cognitive-behavioural treatment for childhood PGD, combined with five sessions of parental counselling, immediately after the treatment and at three, six and twelve months follow-up; (2) to examine tentative mediators of the effects of Grief-Help, (i.e., maladaptive cognitions and behaviours and positive parenting), and (3) to determine whether demographic variables, child personality, as well as symptoms of PGD, anxiety, and depression in parents moderate the treatment effectiveness. METHODS/DESIGN: We will conduct a Randomised Controlled Trial (RCT) in which 160 children and adolescents aged 8–18 years are randomly allocated to cognitive behavioural Grief-Help or to a supportive counselling intervention; both treatments are combined with five sessions of parental counselling. We will recruit participants from clinics for mental health in the Netherlands. The primary outcome measure will be the severity of Prolonged Grief Disorder symptoms according to the Inventory of Prolonged Grief for Children (IPG-C). Secondary outcomes will include PTSD, depression and parent-rated internalizing and externalizing problems. Mediators like positive parenting and maladaptive cognitions and behaviours will be identified. We will also examine possible moderators including demographic variables (e.g. time since loss, cause of death), psychopathology symptoms in parents (PGD, anxiety and depression) and child personality. Assessments will take place in both groups at baseline, after the treatment-phase and three, six and twelve months after the post-treatment assessment. DISCUSSION: We aim to contribute to the improvement of mental health care for children and adolescents suffering from loss. By comparing Grief-Help with supportive counselling, and by investigating mediators and moderators of its effectiveness we hope to provide new insights in the effects of interventions for bereaved children, and their mechanisms of change. TRIAL REGISTRATION: Netherlands Trial Register NTR385

A prospective, multicentre study to assess frailty in elderly patients with leg ulcers (GERAS study)

Background: Although leg ulcers are a burdensome disease most common in those aged 65 years and older, frailty in this population has not yet been well established. Objectives: The aim of this study was to prospectively explore and compare the presence of frailty in elderly patients with chronic leg or foot ulcers by applying different validated frailty screening methods in three healthcare settings and to assess the feasibility of frailty screening. Methods: We compared frailty of leg ulcer patients referred to an academic hospital with a non-academic hospital, leg ulcer patients receiving (primary) homecare, and a dermato-oncology patient population (control group). Frailty and quality of life were assessed using four validated questionnaires: the Groninger Frailty Indicator, Geriatric-8, Mini-Cog and Wound Quality of Life. To analyse data multiple (non)-parametric tests were performed. Results: Fifty of 60 included leg ulcer patients (83%) scored “frail” on at least one frailty questionnaire (GFI, G8 or Mini-Cog). The number of patients scoring “frail” on two or three out of three applied frailty questionnaires were significantly higher in the academic and homecare ulcer population compared with the non-academic ulcer population and control group (p = 0.002). In the academic ulcer population mean Wound Quality of Life scores were 30.2 (SD 17.6), compared with 17.7 (SD 13.1) in the non-academic and 15.0 (SD 10.4) in the homecare ulcer population (p = 0.002). Conclusion: The majority of patients suffering from leg ulcers in this study was frail. The highest frailty prevalence was observed in the academic and homecare ulcer populations. The largest impaired quality of life was reported in the academic ulcer population. In dermatology practice, implementing frailty screening and initiating appropriate (paramedical) supportive care should be considered to improve patient outcomes.</p

Validity and Reliability of the Dutch Adaptation of the Actinic Keratosis Quality of Life Questionnaire (AKQoL)

Background: The Actinic Keratosis Quality of Life Questionnaire (AKQoL) is a disease-specific instrument to measure the impact of actinic keratosis (AK) on patients' lives. Objective: To validate and test the psychometric properties of the AKQoL translated into the Dutch language (AKQoL-NL). Methods: All new patients ≥50 years of age with untreated AK in a university medical center and a general hospital between August 2014 and August 2015 were eligible. The AKQoL was obtained and repeated after 2 weeks. The feasibility was tested by missing responses and response distribution. The internal consistency reliability of each domain was investigated with the Cronbach alpha, and test-retest reliability and validity with the Spearman correlation coefficient. AKQoL scores were compared to the Skindex-17 for convergent validity and to the Groningen Frailty Indicator scores for divergent validity. Results: A total of 153 of 190 eligible patients consented to participate. Feasibility analysis showed that none of the items missed ≥10% of responses but 5 of the 9 items showed floor effect. The AKQoL subscales showed a moderate internal consistency (Cronbach α = 0.235-0.468) and an excellent test-retest reliability (interclass correlation coefficient = 0.997-1). The AKQoL correlated poorly with the symptom component and moderately with the psychosocial component of the Skindex-17 (ρ =-0.015 to 0.346 and 0.324 to 0.501, respectively), which is less than expected. The AKQoL scored poorly in both of the Groningen Frailty Indicator (GFI) components (ρ =-0.97 to 0.12 and 0.185 to 0.276, respectively), as expected. Conclusion: The AKQoL-NL is a feasible, moderately valid, and moderately reliable health-related quality of life questionnaire