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.

Physical and psychosocial correlates of head and neck cancer: an update of the literature and challenges for the future (1996-2003).

An update of the literature on physical and psychosocial aspects of head and neck cancer, with special emphasis on effects of treatment, patient-related factors and psychosocial intervention on quality of life (QoL). QoL deteriorates during and directly after treatment and returns only slowly to pre-treatment values. Organ preservation, gender and coping-strategies are factors related to QoL after treatment. As prognosis and survival were found to be comparable under different treatment regimes, we noticed a gradual shift in therapy towards organ preservation. Systematic care, using specific instruments is important for improving the QoL. We feel that more attention should be given to improving support, in order to optimize the QoL of patients during the palliative stage.

Function of local networks in palliative care: a Dutch view.

BACKGROUND: Although network formation is considered an effective method of stimulating the integrated delivery of palliative care, scientific evidence on the usefulness of network formation is scarce. In 1998 the Ministry of Health of The Netherlands started a 5-year stimulation program on palliative care by founding and funding six regional Centres for the Development of Palliative Care. These centers were structured around pivotal organizations such as university hospitals and comprehensive cancer centers. As part of the stimulation program a locoregional network model was introduced within each center for the Development of Palliative Care to integrate palliative care services in the Dutch health care system. OBJECTIVE: We performed a study on network formation in the southwestern area of The Netherlands with 2.4 million inhabitants. The study aimed to answer the following questions: (1) how do networks in palliative care develop, which care providers participate and how do they function? (2) which are the achievements of the palliative care networks as perceived by their participants? (3) which are the success factors of the palliative care networks according to their participants and which factors predict the achievements? DESIGN: Between September 2000 and January 2004 eight local palliative care networks in the region of the Center for Development of Palliative Care-Rotterdam (southwestern area of The Netherlands) were closely followed to gain information on their characteristics and developmental course. MEASUREMENTS: At the start of the study semistructured interviews were held with the coordinators of the eight networks. The information from these interviews and from the network documents were used to constitute a questionnaire to assess the opinions and experiences of the network participants. RESULTS: According to the vast majority of responders, the most important reason to install the networks was the lack of integration between the existing local health care services. The networks were initiated to stimulate mutual collaboration, improve accessibility to health care services and increase the quality of these services. The most important achievements obtained by the palliative care networks were: increase in personal contacts between colleagues in a region, improved engagement and collaboration between participating organizations, enhanced insight in the health care provisions, joined initiatives for the development of new care products, and organization of patient-tailored care. Important success factors for the networks were deemed: fruitful mutual contacts, regular funding and the collective development of care products. By logistic regression analyses, the collective development of new care products and the organization of case discussions between caregivers from different health care services turned out to be the most important predictors for success of the palliative care networks. CONCLUSIONS: Projects that stimulate the communication between professionals appear to improve the mutual collaboration between individual participants and between the participating organizations, which consequently enhances the quality of palliative care.

Determinants of the intention of Dutch adolescents to register as organ donors.

This article identifies relevant predictors of willingness among Dutch adolescents to register as posthumous organ and tissue donors. A cross-sectional survey was conducted among 1836 Dutch adolescents between 16 and 18 years of age who had not yet been approached for registration. Sixty-seven percent of the participants indicated that they were willing to register as organ donors. In order of greatest association, negative outcome beliefs, anxiety, social outcome expectations, involvement with organ donation issues, positive outcome beliefs, knowledge about organ donation registration, past behaviour, and sex were significant predictors of the willingness to register as organ donor. Religion and level of education had a significant bi-variate correlation with intention, but were not significant predictors after controlling for other variables. The results give clear suggestions for tailoring organ donation registration interventions to specific characteristics, beliefs and misconceptions of adolescents.

Measuring information needs among cancer patients.

A scale for assessing information needs of cancer patients was constructed and validated. Two studies were conducted. Study 1 was designed to test the factor structure of the measurement instrument. A total of 498 patients with breast cancer and Hodgkin disease were interviewed. In study 2, 133 patients with head and neck cancer were measured just before treatment as well as 6, 13 and 52 weeks after treatment. Study 2 aimed to confirm the factor structure established in study 1, and to test for construct validity in a new population, the psychometric properties of the information needs scales, and the scales' sensitivity to change. In study 1 a two-factor structure (an action and a disease-oriented scale) including 17 items was revealed. The second study confirmed the factor structure from study 1. As hypothesized, greater information needs related to higher levels of state-anxiety, more depression, and more psychological complaints. Although, correlations over time per information need scale indicate some stability of scores, findings suggested that the need for information about disease and treatment is less stable over time than need for information about access to help and solutions. Further validation of the instrument is required.

[Second Opinion Consult Clinic for Surgical Oncology in the Daniel den Hoed Clinic: analysis of the first 245 patients]. / De Tweedemeningpolikliniek Chirurgische oncologie in de Daniel den Hoed Kliniek: analyse van de eerste 245 patiënten.

OBJECTIVE: To determine the characteristics and outcome in patients visiting a surgical oncology outpatient clinic for a second opinion. DESIGN: Prospective and descriptive. METHOD: From October 1996 till December 1998, 245 patients visited the Second Opinion Outpatient Clinic of the department of Surgical Oncology of the University Hospital Rotterdam/Daniel den Hoed Cancer Centre, Rotterdam, the Netherlands. The oncological data were recorded. The patient's satisfaction with their first physician and the hospital was scored in a standardized way. Cytological, histological and radiological material was revised and discrepancies with the results from elsewhere were recorded. The results of comparing the first and second opinion were retrospectively categorized as: identical; not identical without consequences for the prognosis but with implications for the quality of life; not identical with implications for the prognosis. RESULTS: The primary tumour was breast cancer in 58% of the patients, 19% had a tumour of the digestive tract, and 23% presented with a variety of malignancies. The main problems for which the second opinion was asked were treatment (69%), diagnosis (17%) and adjuvant treatment (11%). Of all patients 53% was satisfied with the communication with the primary physician, 24% was moderately satisfied and 23% was unsatisfied. Revision of pathological and radiological material was done in 214 and 157 patients, respectively, resulting in 1% and 3% major discrepancies with therapeutical implications. The second opinion was identical to the first opinion in 53% of the patients. In 24% it was different without and in 7% with possible implications for the prognosis. In 16% a comparison of the second with the first opinion was not possible. Seventy-one per cent of the patients were referred to the primary physician, while for 21% further treatment or follow-up was done in the Cancer Centre and 8% chose to be referred to another hospital. Of patients who were satisfied or moderately satisfied with the communication with their primary physician 83% and 79% respectively were referred to the primary physician compared with 31% of those who were unsatisfied.

Physical and psychosocial correlates of head and neck cancer: a review of the literature.

This article reviews recent literature on the physical and psychosocial correlates of head and neck cancer, with a focus on quality-of-life issues, rehabilitation outcomes, and changes in the literature from the previous decade. These studies have shown that head and neck cancer has an enormous impact on the quality of life of patients. The most important physical symptoms are speech problems, dry mouth and throat, and swallowing problems. Pain is also frequently reported. Disturbances in psychosocial functioning and psychological distress are reported by a considerable number of patients; worry, anxiety, mood disorder, fatigue, and depression are the main symptoms. Cancer of the head and neck has a negative effect on social, recreational, and sexual functioning. Despite a growing number of longitudinal studies, little is known about the rehabilitation outcomes over a longer period of time. Future research is necessary to form a consensus about the further development and use of specific instruments to study patients with cancer of the head and neck, to conduct more prospective studies, and to develop programs that are aimed at maximizing rehabilitation outcomes and evaluate these programs with randomized designs.

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.

Medical and psychosocial effects of early discharge after surgery for breast cancer: randomised trial.

OBJECTIVE: To assess the medical and psychosocial effects of early hospital discharge after surgery for breast cancer on complication rate, patient satisfaction, and psychosocial outcomes. DESIGN: Randomised trial comparing discharge from hospital 4 days after surgery (with drain in situ) with discharge after drain removal (mean 9 days in hospital). Psychosocial measurements performed before surgery and 1 and 4 months after. SETTING: General hospital and cancer clinic in Rotterdam with a socioeconomically diverse population. SUBJECTS: 125 women with operable breast cancer. MAIN OUTCOME MEASURES: Incidence of complications after surgery for breast cancer, patient satisfaction with treatment, and psychosocial effects of short stay or long stay in hospital. RESULTS: Patient satisfaction with the short stay in hospital was high; only 4% (2/56 at 1 month after surgery and 2/52 at 4 months after surgery) of patients indicated that they would have preferred a longer stay. There were no significant differences in duration of drainage from the axilla between the short stay and long stay groups (median 8 v 9 days respectively, P=0.45) or the incidence of wound complications (10 patients v 9 patients). The median number of seroma aspirations per patient was higher for the long stay group (1 v 3.5, P=0.04). Leakage along the drain occurred more frequently in short stay patients (21 v 10 patients, P=0.04). The two groups did not differ in scores for psychosocial problems (uncertainty, anxiety, loneliness, disturbed sleep, loss of control, threat to self esteem), physical or psychological complaints, or in the coping strategies used. Before surgery, short stay patients scored higher on scales of depression (P=0.03) and after surgery they were more likely to discuss their disease with their families (at 1 month P=0.004, at 4 months P=0.04). CONCLUSIONS: Early discharge from hospital after surgery for breast cancer is safe and is well received by patients. Early discharge seems to enhance the opportunity for social support within the family.

Fat Watch: a nationwide campaign in The Netherlands to reduce fat intake--process evaluations.

Fat Watch was a four-year campaign carried out in cooperation with retailers and industry, aiming at a reduction of fat consumption by 10% among the Dutch population. Mass media and supermarkets were the main conveyers of the message. Supermarkets participated well in the first (53%) and in the third year (51%), but to a lesser extent in the second year (36%). Campaign awareness in the target group (household shoppers for food) was relatively high in the first year (60%), but dropped in the next two years (40% and 32%, respectively). Combined with prominent mass media messages and with promotional activities of food products by suppliers, supermarkets seem a good channel for dissemination of nutrition information. Fat Watch has proved that cooperation of governmental, industrial and retail organizations for several years with respect to nutrition education activities is possible in the Netherlands.

Psychosocial and physical correlates of survival and recurrence in patients with head and neck carcinoma: results of a 6-year longitudinal study.

BACKGROUND: Studies that have examined correlations between psychosocial factors and survival in cancer patients do not permit any definitive conclusions. To the authors' knowledge, to date no study has examined the relation between medical as well as quality of life variables and survival in head and neck carcinoma patients. The current study focused on the complex interactions among psychosocial, medical, behavioral, and demographic variables as they relate to prognosis in these patients. METHODS: A total of 133 consecutive head and neck carcinoma patients were included in a prospective study at pretreatment. In addition to clinical variables, psychosocial and physical functioning was assessed by means of a self-report questionnaire. RESULTS: During the observation period 57 patients died whereas 76 were still alive at 6 years after treatment. Results of the multivariate survival analysis indicated that patients without head and neck metastasis had a better prognosis than patients with positive cervical lymph nodes. Pretreatment smoking showed a negative correlation with overall survival. Patients who were more physically self-efficacious (i.e., higher perceived physical abilities) were more likely to survive and less likely to develop a recurrence. In addition, patients who expressed intense psychosocial complaints prior to treatment had a better prognosis than had those who did not express such negative feelings. CONCLUSIONS: The current findings linking physical self-efficacy and prognosis are promising, but clinical trials are necessary to examine the direct and indirect mediational pathways of the variables that underlie physical efficacy and influence survival and recurrence. Also, the negative correlation between pretreatment smoking and survival suggests a need for increased efforts to address smoking in newly diagnosed patients.

Cost of care in a randomised trial of early hospital discharge after surgery for breast cancer.

The aim of this study was to determine the effect of the reduction of the length of hospital stay after surgery for breast cancer on the rate of care consumption and the cost of care. Patients with operable breast cancer were randomised to a short or long postoperative hospital stay. Data on care consumption were collected for a period of 4 months in diaries administered by patients, and socioeconomic status was evaluated by questionnaires. A cost minimisation analysis using the 'societal' perspective was performed and savings were compared with the savings of hospital charges. The use of professional home care was higher for the short stay group during the first month (7.2 versus 1.3 h, P < 0.0001). The number of out-patient consultations, the intensity of informal home care and patient's expenses did not increase after early discharge. The total cost of care was reduced by US$1320 by introducing the short stay programme (P = 0.0007), but the savings were substantially lower than the savings in hospital charges (US$2680).

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 logbook's 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.

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 Hodgkin's 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 scale's 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 scale's 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.

Continuity of information for breast cancer patients: the development, use and evaluation of a multidisciplinary care-protocol.

The multidisciplinary nature of much patient-care may lead to gaps in the continuity of information which they receive, as well as to different care-professionals giving them contradictory information. As a counter-measure, a protocol has been developed which integrates medical, nursing, and a variety of extramural events and activities into a comprehensive description of 15 'moments' in the care of breast cancer surgery-patients. Among innovations, the protocol includes information about psychosocial guidance following diagnosis, and about the discharge procedure and contact with fellow-sufferers. The protocol was implemented in Rotterdam in 1994, in two hospitals and in the community; and evaluated formatively on the basis of reactions from 53 patients and 81 care-professionals. Both groups found its form and content to be successful and informative.

Rehabilitation outcomes of long-term survivors treated for head and neck cancer.

BACKGROUND: Little is known about the rehabilitation outcomes of long-term survivors following treatment for head and neck cancer. There are, for example, no studies on physical and psychosocial rehabilitation outcomes of T1 glottic larynx carcinoma, despite the fact that these form the majority of head and neck cancer sites. Thus, this investigation afforded a unique opportunity for examining similarities and differences among T1 glottic larynx patients, laryngectomy patients, and those who had surgery for cancer of the oral cavity and/or oropharynx along a variety of physical and psychosocial dimensions. METHODS: To describe the impact of these three types of head and neck cancer and their treatment on the physical and psychosocial functioning of long-term survivors, a self-report questionnaire was completed by 110 patients treated between 2 and 6 years previously in a major cancer center. RESULTS: Data indicate that a higher percentage of patients treated with laryngectomy or commando procedures still experience severe psychosocial distress between 2 and 6 years after their last treatment than do patients treated with radiotherapy for a T1 carcinoma of the glottic larynx. Psychosocial and physical complaints are still reported by many laryngectomy patients, apparently the result of problems in effective communication with others. Many commando procedure patients experience problems with respect to food intake, and with disfigurement and its consequences. T1 larynx patients mainly experience a considerable number of physical complaints. The greater the time that had elapsed since treatment, the fewer the psychosocial problems associated with head and neck tumors. Open discussion of the illness in the family, social support, and perceptions of adequate information from the specialist are the most important predictors of positive rehabilitation outcomes. CONCLUSIONS: This study indicates that T1 larynx patients report many physical complaints even though several years had elapsed since treatment. Also, laryngectomy patients may need psychosocial guidance for a longer posttreatment period and that health care personnel must involve the partner as much as possible in all communications. Commando procedure patients in particular feel hindered by their disfigurement and its consequences. Future research with respect to validation of the specific head and neck modules is needed.

Late psychosocial consequences for parents of children who survived cancer.

Investigated late psychosocial sequelae in 133 parents of children who survived cancer, using questionnaires developed to measure the specific impact of the disease. Childhood cancer had distinct and persistent late psychosocial effects on parents of survivors. Uncertainty and loneliness were the most reported problems. Demographic and situational characteristics such as being a mother, low SES, no religious affiliation, chronic disease in a family member other than the child surviving cancer, and concurrent stresses increased the risk of reporting late problems. Treatment itself had little or no effect on reported problems. However, when treatment led to long-term sequelae in the child, a significant and specific effect on parental problems was observed. No decline of problems over time was found, which has implications for patient care.