Jean F. A. Pruyn

Openness to discuss cancer in the nuclear family: scale, development, and validation.

Objective To describe the development and validation of a scale for assessing openness to discuss cancer in the family. Method: Two studies were conducted. Study 1 was a cross-sectional study designed to test the factor structure of the scale. Four hundred ninety-eight patients with either breast cancer or Hodgkins disease were interviewed. In Study 2, a longitudinal study, 133 patients with cancer in the head and neck were tested at four points in time: just before treatment, 6 weeks, 13 weeks, and 52 weeks after treatment. Study 2 aimed to confirm the factor structure established in Study 1, to test for construct validity in a new population, to test the psychometric properties of the Openness Scale, and to test the scales sensitivity to change. Results: In Study 1, a one-factor solution was revealed, resulting in a scale of eight items. In Study 2, the factor structure found in Study 1 was confirmed. In line with theoretical expectations, subjects who perceived their communication about cancer as more open showed more positive rehabilitation outcomes especially at 13 weeks after treatment (less uncertainty, fewer negative feelings, more control, higher self-esteem, fewer psychological and physical complaints). Furthermore, more open communication related with more support by family members and more discussion with the partner. The scale was found to be stable over time. Conclusions: The scales construction and subsequent analysis show that open discussion of problems (related to cancer) in the family can be measured reliably with an eight-item instrument. Additional validation of the scale is indicated.

Psychosocial correlates of cancer relapse and survival: a literature review.

This article reviews literature on the psychosocial correlates of cancer relapse and survival from 1979 through 1995. The factors studied were structured according to a theoretical model of coping with cancer. Reviewed studies have shown that factors most frequently evaluated were depression, anxiety, hopelessness/helplessness, hostility, marital status and social involvement. Mainly inconsistent results were found. The strongest evidence for a relationship between psychosocial variables and prognosis was found for social involvement/social support; in 7 of 15 studies a positive relationship was demonstrated, while no negative associations were found. Coping styles e.g., fighting spirit and stoic acceptance, and severe/stressful life events were found to have no conclusive influence on the length of survival. Important determinants of the coping model, such as uncertainty and information given by the specialist were not studied as possible predictors of survival and/or relapse free period. Among the factors that showed no correlation at all was multidimensional health locus of control. For the inconsistent findings, a considerable number of methodologic shortcomings with respect to study design, sample size, measure and statistical analysis are enumerated.

Continuity of information in cancer care: evaluation of a logbook

A logbook, or patient-dossier, was developed, to improve continuity of information in the treatment and care of head-and-neck cancer patients. It contained information modules on different aspects of care, as well as forms to facilitate communication both between patient and care-professional and between the various care-professionals. The logbooks effectiveness was evaluated in two hospitals in Rotterdam, by comparing outcomes for trial and comparison groups of, respectively, 71 and 54 patients and 59 and 35 care-professionals. Trial patients proved to be better informed, to receive more support and to experience fewer psychosocial problems. Professionals who used the logbook were better informed about their patients, and about the care-activities of fellow-professionals than those who did not. They recognised an improvement in their contact with colleagues and in the harmonisation of their respective care-activities.

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

UNLABELLED 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 re-engagement, (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.

Palliative care for head and neck cancer patients in general practice.

Conclusion: The findings of this study justify the goals of the Expert Centre such as the improvement of somatic and psychosocial care and consultation. Objective: A recent review showed that little attention is paid to palliative care for head and neck patients. The Erasmus MC has initiated an Expert Centre of Palliative Care Head and Neck Oncology with special interest in patient care, consultation and research. In this study the experience of general practitioners (GPs) in their care of palliative head and neck cancer patients before the start of the Expert Centre is assessed. The aim of the study was to find possible gaps in care and communication and to use GPs ideas to improve the centres functioning. Materials and methods: Fifty-five GPs with a patient in their practice who died from head and neck cancer between January 2003 and July 2004 after being treated in the Erasmus MC were included. The GPs were asked to fill out a questionnaire regarding their experience in the care of palliative head and neck cancer patients, the communication between first- and third-line care providers and the work of both the GP and the specialist involved. Results: The response rate was 75%. The palliative stage lasted approximately 4 months. The GPs felt that symptom control was generally not sufficient. Also improvements were necessary in psychosocial care and in the communication between first- and third-line care providers. They also experienced gaps in their knowledge of specific head and neck oncologic palliative care.

EXPERIENCE OF PALLIATIVE CARE FOR PATIENTS WITH HEAD AND NECK CANCER THROUGH THE EYES OF NEXT OF KIN

Little is known about how palliative care is experienced by patients with head and neck cancer and their relatives. The aim of this retrospective study was to analyze this care from the point of view of surviving relatives.

SURVIVAL OF PATIENTS WITH PALLIATIVE HEAD AND NECK CANCER

The purpose of this study was to describe patient characteristics and prognostic factors for survival in the palliative stage of patients with head and neck cancer.

Symptoms of patients with incurable head and neck cancer: Prevalence and impact on daily functioning

There is lack of research on symptoms in patients with head and neck cancer in the palliative phase. The aim of this study was to explore symptom prevalence and the impact of these symptoms on daily functioning in patients with incurable head and neck cancer. Also, discrepancies between patients and family caregivers are described.

Psychosocial consequences for partners of patients after total laryngectomy and for the relationship between patients and partners

OBJECTIVE This study explored the long-term impact of a Total Laryngectomy (TL) on the partner and on the relationship between laryngectomees and their partners. METHODS 151 laryngectomees and 144 partners completed questionnaires assessing the psychosocial impact of a TL on the partner (quality of life, anxiety and depression, loss of control, fear, hopelessness, post-traumatic growth, caregiving burden) and on the spousal relationship (change in the quality of the spousal relationship and openness to discussion of the illness in the family). RESULTS A considerable number of partners of laryngectomees experience a psychosocial impact of the consequences of the TL, specifically on their social life (35%) and on their sexual relationship (31%). Also, the tendency of other people to neglect their laryngectomized life companion, affects more than half of the partners negatively. Clinical levels of anxiety and depression were found in around 20% of the partners. The consequences of a TL has a negative change on the sexual functioning for more than 30% of both laryngectomees and partners, the communication for around one fifth of both laryngectomees and partners, and feelings of dependency of the partner for one third of the laryngectomees. CONCLUSIONS A TL has a considerable impact on the psychosocial life of partners of laryngectomees and on the spousal relationship. The findings of this explorative study sets the stage for structural screening on the need for support, not only for patients, but also for their partners. Sexuality and intimacy should be part of this screening.

Experience of palliative care for patients with head and neck cancer through the eyes of next of kin: Impact of an Expert Center

Literature is scarce on the palliative care experiences of patients with head and neck cancer. We report our experience in this patient population after the establishment of our Expert Center.