Purpose: Receiving a cancer diagnosis significantly impacts patients’ lives, and how the bad news is delivered influences patients’ trajectory, psychosocial adjustment and openness to psycho-oncological support. We explored how patients’ experiences, reactions and preferences were when receiving the news and which optimization recommendations can be made. Methods: We conducted an exploratory qualitative study with patients who enrolled in the new integrated cross-sectoral psycho-oncological care programme ‘isPO’, being enrolled 12 months post-diagnosis. Data on the main issue (i.e. perception of the moment when the diagnosis is received) were collected via telephone interviews that were fully audiotaped and transcribed. Two independent coders conducted inductive content analyses using MAXQDA. Results: Out of 38 approached patients, 23 cancer patients with 13 different tumour entities participated. They had a mean age of 54.2 (SD 16.2); n = 17 (74%) were female. Three major themes with 14 corresponding subthemes emerged: (1) patients’ experiences with the bad news delivery, including setting, mode, preparation and perceived needs; (2) patients’ reactions to the bad news, such as shock, fear and helplessness, disbelief and denial, anger and feeling of injustice, thankfulness and depression; and (3) patients’ receiving preferences, including psycho-oncological support, addressing informational needs, needs-driven comprehensive support and a competent multidisciplinary support team. Conclusions: The quality of bad news delivery and addressing patients’ needs should be strongly considered by physicians. We recommend integrating patients’ perspective on the quality management processes of breaking bad news. For providing needs-centred high-quality care, applying existing guidelines and acquiring patient-centred communication skills are central.
Purpose: Our purpose was to explore the validity and reliability of the German Focus on the Outcomes of Communication Under Six (FOCUS-G; Thomas-Stonell, Oddson, Robertson, & Rosenbaum, 2010, 2012), which is an authorized adaptation of the Focus on the Outcomes of Communication Under Six (Thomas-Stonell et al., 2010) tool, which measures communicative participation in preschool children. Method: Parents of typically developing children (TDC) and of children with speech impairment (CSI) completed the FOCUS-G and the Questionnaire for Measuring Health-Related Quality of Life in Children (KiddyKINDL; Ravens-Sieberer & Bullinger, 2000). To determine test–retest reliability, the FOCUS-G was readministered to a subsample of parents 1 week later. Results: The FOCUS-G had high values for internal consistency (α = .959, Ω = .941), test–retest reliability (intraclass correlation coefficient = .974), and split–half reliability ( r = .832). Total scores on the FOCUS-G and KiddyKINDL demonstrated significant associations. FOCUS-G total scores and subdomain scores for both samples showed significant correlations, indicating good construct validity. The discriminatory ability of the FOCUS-G was indicated by significantly higher mean scores for TDC ( M = 6.03, SD = 0.65) than CSI ( M = 5.47, SD = 1.02). Conclusion: The overall good psychometric properties of this novel assessment of communicative participation support its use by speech-language pathologists for clinical and research purposes with German-speaking children.
Objective: People with cancer are often confronted not only with the burdens of medical treatment but also with psychological strain, which can lead to mental disorders (MD). To date, the prevalence of MD in newly diagnosed cancer patients and their utilization of mental health services (MHS) are mainly estimated through data of primary studies than considering healthcare‐related claims data.Methods: Statutory health insurance claims data of the AOK/KV Hesse from 2011 to 2014 was analyzed. The number of incident cancer patients with MD and the utilization of MHS within the period of the quarter of incident cancer diagnosis and three subsequent quarters were determined. For incident cancer patients with an incident MD, the predictive values of sex, age group, and tumor entity on the documentation of MD diagnosis and utilization were investigated.Results: The 12‐month prevalence of MD in incident cancer patients was 31.1% for depression, 11.2% for anxiety disorders, and 9.2% for post‐traumatic stress/adjustment disorder (PTSD/AD). Of these, 65.9% received outpatient psychotherapy and 43.0% at least one psychopharmacological drug prescription. Men had a significantly lower chance of receiving an MD diagnosis following cancer.Conclusions: The prevalence of MD observed was higher for depression and lower for PTSD/AD compared to meta‐analyses of clinical trials. Male cancer patients had a lower chance of receiving an MD diagnosis than females, which coincides with existing results.
Background: Evaluating the development phase of a complex intervention programme can be challenging. A prospective evaluation approach is presented based on the example of the new complex psycho-oncological care programme isPO (integrated, cross-sectoral Psycho-Oncology). Prior to programme implementation, we examined (1) if isPO was developed as intended, and (2) if it was relevant and transferable into the newly developed psycho-oncological care networks in North-Rhine Westphalia, Germany. Further, we investigated which implementation facilitators and barriers were anticipated and which implementation strategies were planned by the programme designers (multidisciplinary professionals and cancer supporting organizations who developed the isPO programme components and the networks).Methods: A mixed-methods approach was applied. Qualitative data were collected by quarterly progress reports, interviews and a focus group with the programme designers. Evaluation criteria for document analyses of the quarterly progress reports were developed and applied. Content analysis was applied for analysing interviews and focus group. Quantitative data were gained from evaluating the programme training for the isPO service providers by short written questionnaires that were analysed descriptively.Results: An implementable prototype of the isPO programme has been developed within 15 months, however no piloting was conducted. The programme’s complexity proved to be challenging with regard to coordination and communication of the numerous programme designers. This was intensified by existing interdependencies between the designers. Further, there was little communication and participation between the programme designers and the prospective users (patients and service providers). Due to these challenges, only context-unspecific implementation strategies were planned.Conclusion: The required resources for developing a new complex care programme and the need of a mature implementation strategy should be sufficiently addressed. Programmes may benefit from prospective evaluation by gaining insightful knowledge concerning the programme’s maturity and anticipating implementation facilitators and barriers. A mixed-methods evaluation design was crucial for achieving profound insight into the development process.Trial registration: The study has been registered in the German Clinical Trials Register (No.DRKS00015326) on 30.10.2018.
5 June 2023 in Journal of Cancer Research and Clinical Oncology
Purpose: One-to-one peer supporters called isPO onco-guides (isPO OGs) are an integral part of the new German psycho-oncological form of care ‘integrated, cross-sectoral Psycho-Oncology’ (isPO), additionally to professional care. The isPO OGs are cancer survivors with experiential knowledge, offering information on local support services and answering questions ‘all around cancer’ to newly diagnosed cancer patients. We aimed to evaluate the isPO OG service from three perspectives: patients, isPO OGs, and professional service providers.Methods: A mixed-methods approach was pursued. We conducted interviews and focus groups with the three person groups, and applied qualitative content analysis on the reported resources, processes and outcomes regarding the isPO OG service. Relations with patients’ utilisation and isPO OGs’ work satisfaction were identified with regression and correlation analyses of questionnaire and isPO care data. We compared isPO care networks (CN) withX2-tests or ANOVA. Qualitative and quantitative results were integrated during interpretation phase.Results: Qualitatively, the three person groups agreed on the benefits of the isPO OG service. The implementation’s maturity differed between the CN concerning established processes and resource availability. Attitudes of professional service providers appeared to be crucial for patients’ utilisation of the isPO OG service. Quantitative results emphasised the differences between the CN.Conclusion: Beyond differences in the CN, the isPO OG service has two psychosocial benefits: providing relevant, reliable, and understandable information; and offering the encouraging example that surviving and living with cancer is possible.Trial registration: The study was registered in the German Clinical Trials Register (No. DRKS00015326) on 30.10.2018.