Goal processes & self-efficacy related to psychological distress in head & neck cancer patients and their partners

Purpose and objective of the research: In this cross-sectional study we used a self-regulation perspective to better understand the experience of psychological distress in head & neck (H&N) cancer patients and their partners. We examined which goals they valued and the extent to which patients and partners experience goal disturbance. Furthermore, associations were explored between goal disturbance, goal reengagement, (goal)self-efficacy, and psychological distress. Methods and sample: H&N cancer patients and their partners, recruited from the Erasmus Medical Center Rotterdam (N = 40), were interviewed and completed questionnaires, assessing the above aspects of the self-regulation theory. Key results: H&N cancer patients and their partners experienced goal disturbance from the disease. Such disturbances were in patients significantly related to more psychological distress. Higher levels of goal re-engagement were related to less psychological distress, again only significantly in patients. More self-efficacy was significantly associated with less psychological distress in both patients and partners. Conclusions: Self-regulation abilities as goal re-engagement and self-efficacy may be screened and used as target in future psychological interventions, given their potential to decrease perceived psychological distress. In view of elevated levels of goal disturbances in partners, psychological support for caring relatives in such interventions is recommended. (c) 2010 Published by Elsevier Ltd

Unmet supportive care needs among informal caregivers of patients with head and neck cancer in the first 2 years after diagnosis and treatment: a prospective cohort study

OBJECTIVE: Informal caregivers of head and neck cancer (HNC) patients have a high caregiver burden and often face complex practical caregiving tasks. This may result in unmet supportive care needs, which can impact their quality of life (QoL) and cause psychological distress. In this study, we identify caregivers' unmet needs during long-term follow-up and identify caregivers prone to unmet supportive care needs. METHODS: Data were used from the multicenter prospective cohort study NETherlands QUality of life and Biomedical cohort studies In Cancer (NET-QUBIC). The unmet supportive care needs, psychological distress, caregiver burden, and QoL were measured for 234 informal caregivers and their related patients at baseline, 3, 6, 12, and 24 months after. Mixed effect models for repeated measurements were used. RESULTS: At baseline, most caregivers (70.3%) reported at least one unmet supportive care need, with most of the identified needs in the "healthcare & illness" domain. During the follow-up period, caregivers' unmet needs decreased significantly in all domains. Nevertheless, 2 years after treatment, 28.3% were still reporting at least one unmet need. Financial problems were increasingly associated with unmet needs over time. Furthermore, caring for a patient who themselves had many unmet needs, an advanced tumor stage, or severe comorbidity was associated with significantly more unmet needs in caregivers. CONCLUSIONS: The current study shows the strong likelihood of caregivers of HNC patients facing unmet supportive care needs and the interaction between the needs of patients and caregivers. It is important to optimally support informal caregivers by involving them from the start when counseling patients, by providing them with relevant and understandable information, and by referring vulnerable caregivers for (psychosocial) support

Key Aspects of Prognostic Model Development and Interpretation From a Clinical Perspective

Importance: Prognostication is an important aspect of clinical decision-making, but it is often challenging. Previous studies show that both patients and physicians tend to overestimate survival chances. Prediction models may assist in estimating and quantifying prognosis. However, insufficient understanding of the development, possibilities, and limitations of such models can lead to misinterpretations. Although many excellent books and comprehensive methodological articles on prognostic model research are published, they may not be accessible enough for the clinical audience. Our aim is to provide an overview on the main issues regarding prediction research for health care professionals to achieve better interpretation and increase the use of prognostic models in daily clinical practice. Observations: The first steps of model development include coding of predictors, model specification, and estimation. Next, we discuss the assessment of the performance of a prediction model, including discrimination and calibration aspects, followed by approaches to internal and external validation and updating. Finally, model reporting, presentation, and steps toward clinical implementation are presented. Conclusions and Relevance: After thorough consideration of the research question, data inspection, and coding of predictors, one can start with the specification of a prediction model. The number of candidate predictors should be kept limited, in view of the number of events in the data, to prevent overfitting. Calibration and discrimination are 2 aspects of model performance that complement each other and should be assessed preferably at external validation. Model development should be accompanied by qualitative research among patients and physicians to facilitate the development of a valuable tool and maximize possibilities for successful implementation. After model presentation is optimized, impact studies are required to assess the clinical value of a prediction model

Self-efficacy and coping style in relation to psychological distress and quality of life in informal caregivers of patients with head and neck cancer: a longitudinal study

Objective: In order to understand how informal caregivers of head and neck cancer (HNC) patients deal with the consequences of the disease, we investigated their self-efficacy and coping style in relation to symptoms of anxiety and depression (distress) and quality of life (QoL) over time. In addition, factors associated with self-efficacy and coping style were investigated. Methods: A total of 222 informal caregivers and their related HNC patients were prospectively followed as part from the multicenter cohort NETherlands QUality of life and Biomedical cohort studies In Cancer (NET-QUBIC). Self-efficacy and coping style were measured at baseline, and distress and QoL at baseline and 3, 6, 12, and 24 months after treatment. Results: Informal caregivers had a high level of self-efficacy comparable with patients. Caregivers used “seeking social support,” “passive reacting,” and “expression of emotions” more often than patients. Factors associated with self-efficacy and coping were higher age and lower education. Higher self-efficacy was related with better QoL and “active tackling” was associated with less depression symptoms. “Passive reacting” and “expression of emotions” were associated with higher psychological distress and reduced QoL. Conclusion: Among informal caregivers of HNC patients, higher self-efficacy and “active tackling” were associated with better functioning over time, while “passive reacting” and “expression of negative emotions” were associated with worse functioning. Awareness of the differences in self-efficacy skills and coping and their relationship with QoL and psychological distress will help clinicians to identify caregivers that may benefit from additional support that improve self-efficacy and “active tackling” and reduce negative coping styles

Additional file 2 of Head and neck cancer patients’ preferences for individualized prognostic information: a focus group study

Additional file2: Material S2. PowerPoint presentation that was used during the focus groups

Additional file 2 of Head and neck cancer patients’ preferences for individualized prognostic information: a focus group study

Additional file2: Material S2. PowerPoint presentation that was used during the focus groups

Head and neck cancer patients’ preferences for individualized prognostic information: a focus group study

Abstract Background Head and Neck cancer (HNC) is characterized by significant mortality and morbidity. Treatment is often invasive and interferes with vital functions, resulting in a delicate balance between survival benefit and deterioration in quality of life (QoL). Therefore, including prognostic information during patient counseling can be of great importance. The first aim of this study was to explore HNC patients’ preferences for receiving prognostic information: both qualitative (general terms like “curable cancer”), and quantitative information (numbers, percentages). The second aim of this study was to explore patients’ views on “OncologIQ”, a prognostic model developed to estimate overall survival in newly diagnosed HNC patients. Methods We conducted a single center qualitative study by organizing five focus groups with HNC patients (n = 21) and their caregivers (n = 19), categorized in: 1) small laryngeal carcinomas treated with radiotherapy or laser, 2) extensive oral cavity procedures, 3) total laryngectomy, 4) chemoradiation, 5) other treatments. The patients’ perspective was the main focus. The interview guide consisted of two main topics: life-expectancy and the prognostic model OncologIQ. All focus groups were recorded, transcribed and coded. Themes were derived using content analysis. Results While all patients considered it somewhat to very important to receive information about their life-expectancy, only some of them wanted to receive quantitative information. Disclosing qualitative prognostic information like “the cancer is curable” would give enough reassurance for most patients. Overall, patients thought life-expectancy should not be discussed shortly after cancer diagnosis disclosure, as a certain time is needed to process the first shock. They had a stronger preference for receiving prognostic information in case of a poor prognosis. Prognostic information should also include information on the expected QoL. The pie chart was the most preferred chart for discussing survival rates. Conclusions The participants found it important to receive information on their life-expectancy. While most patients were enough reassured by qualitative prognostic information, some wanted to receive quantitative information like OncologIQs’ estimates. A tailor-made approach is necessary to provide customized prognostic information. A clinical practice guideline was developed to support professionals in sharing prognostic information, aiming to improve shared decision making and patient-centered care