Transplantation experience as a predictor for quality of life during the first 6 months after lung transplantation.

OBJECTIVE: Quality of life (QoL) is a crucial goal of post-transplant care. This study investigated predictors of QoL within the first 6 months after transplantation. METHODS: Forty patients were assessed 2 weeks (T1), 3 months (T2), and 6 months post-transplant (T3). In the quantitative part, the EuroQol questionnaire (EQ-5D) and visualization methods (Prism) were applied. In the qualitative part, interviews were analyzed. Regression analyses were used to investigate the impact of the pictorial ratings at T1 on QoL at T2 and T3. The pictorial variables were related to the interviews for an in-depth analysis. RESULTS: There was an increase in QoL between T1 and T2 that remained stable from T2 to T3. Smaller distances in the variable Prism_Lung (acceptance of the lung) and larger distances in the variable Prism_Transplantation (distance to the transplantation experience) were related to the increase in QoL between T1 and T2 and to an higher QoL at T2. High-QoL patients were able to create an equilibrium of defense and acceptance. CONCLUSION: Psychological processes early after transplant are of significance for the development of QoL within the 6 months following the surgery. These insights demonstrate that a mixed methodological approach provides a helpful understanding of post-transplant processing.

When cancer cannot be cured: A qualitative study on relationship changes in couples facing advanced melanoma.

OBJECTIVE: The aim of this qualitative study was to gain a deeper understanding about couples' relationship changes over time (the first six months) after one partner is diagnosed with an incurable advanced melanoma (stage III or IV). METHOD: In semistructured interviews, eight patients and their partners were asked separately about potential changes in their relationship since diagnosis. The same questions were asked again six months later, but focusing on relationship changes over the preceding six months. Some 32 audiotaped interviews were analyzed applying qualitative content analysis. RESULTS: At baseline (t1), relationship changes were mostly reported in terms of caring, closeness/distance regulation, and communication patterns. While changes in caregiving and distance/closeness regulation remained main issues at six months follow-up (t2), greater appreciation of the relationship and limitations in terms of planning spare time also emerged as major issues. Unexpectedly, 50% of patients and partners reported actively hiding their negative emotions and sorrows from their counterparts to spare them worry. Furthermore, qualitative content analysis revealed relationship changes even in those patients and partners who primarily reported no changes over the course of the disease. SIGNIFICANCE OF RESULTS: Our findings revealed a differentiated and complex picture about relationship changes over time, which also might aid in the development of support programs for couples dealing with advanced cancer, focusing on the aspects of caring, closeness/distance regulation, and communication patterns.

Mutual associations between patients' and partners' depression and quality of life with respect to relationship quality, physical complaints, and sense of coherence in couples coping with cancer.

PURPOSE: The aim of this article is to examine the mutual associations between patients' and partners' depression and quality of life (QOL) in couples facing cancer with respect to potential resources (sense of coherence and relationship quality (RQ)) and stressors (physical complaints). PATIENTS AND METHODS: Questionnaires rating depression, QOL, sense of coherence, RQ, and physical complaints were completed by 207 couples facing different cancer types and stages. Multiple regression models were used to assess the mutual associations between patient and partner variables. RESULTS: In female patients, 40.7% of the variance in depression score was explained by male partners' stressors and resources, whereas only 3.5% of the variance in male patients' depression was explained by female partners' stressors and resources. In male and female partners, respectively, the patients' stressors and resources explained 34.9% versus just 15.8% of the variance in depression. Regarding QOL in female patients, 30.1% of the variance was explained by the partners' stressors and resources, versus only 3.7% in male patients. Meanwhile, in male and female partners, respectively, the patients' stressors and resources explained 25.6% and 12.9% of the variance in QOL. CONCLUSIONS: These findings support a couples-centered approach to psycho-oncological counseling and treatment. Particularly in depressed couples with low RQ, couples therapy or counseling should be considered because of the mutual adverse association between depression and QOL in these couples.

Changes in close relationships between cancer patients and their partners.

PURPOSE: Distress caused by cancer may have an important impact on the quality of a couple's relationship. This investigation examined perceived relationship changes in a sample of cancer patients and their partners, accounting for gender and role (i.e., patient or partner). PATIENTS AND METHODS: A total of 209 patients with different cancer types and stages and their partners completed questionnaires with items on psychological distress (anxiety and depression), quality of life, and perceptions regarding positive and negative relationship changes. RESULTS: A total of 149 patients (71.3%) and 156 partners (74.6%) reported that the diagnosis of cancer had changed their relationship. Of these, 121 (57.9%) patients and 116 (55.5%) partners reported positive changes only, whereas eight patients (3.8%) and 18 partners (8.6%) indicated negative changes only. Twenty patients (9.6%) and 22 partners (10.5%) had experienced both positive and negative changes. In male patients and partners, negative dyadic changes were associated with lower quality of life and higher levels of anxiety and depression. This finding was similar in female partners, but not in female patients. The association between perceived negative relationship changes and both increased psychological distress and reduced quality of life remained significant even when controlled for gender and congruency of perception. CONCLUSIONS: Although most couples in our sample reported growing closer while dealing with cancer, a small but sizeable percentage observed negative changes in their relationships, and these negative changes resulted in increased psychological distress and worse quality of life. Female partners were at greatest risk for these negative perceptions.

Adopting a family approach to theory and practice: measuring distress in cancer patient-partner dyads with the distress thermometer.

OBJECTIVE: Significant others are central to patients' experience and management of their cancer illness. Building on our validation of the Distress Thermometer (DT) for family members, this investigation examines individual and collective distress in a sample of cancer patients and their matched partners, accounting for the aspects of gender and role. METHOD: Questionnaires including the DT were completed by a heterogeneous sample of 224 couples taking part in a multisite study. RESULTS: Our investigation showed that male patients (34.2%), female patients (31.9%), and male partners (29.1%) exhibited very similar levels of distress, while female partners (50.5%) exhibited much higher levels of distress according to the DT. At the dyad level just over half the total sample contained at least one individual reporting significant levels of distress. Among dyads with at least one distressed person, the proportion of dyads where both individuals reported distress was greatest (23.6%). Gender and role analyses revealed that males and females were not equally distributed among the four categories of dyads (i.e. dyads with no distress; dyads where solely the patient or dyads where solely the partner is distressed; dyads where both are distressed). CONCLUSION: A remarkable number of dyads reported distress in one or both partners. Diverse patterns of distress within dyads suggest varying risks of psychosocial strain. Screening patients' partners in addition to patients themselves may enable earlier identification of risk settings. The support offered to either member of such dyads should account for their role- and gender-specific needs.

Posttraumatic growth in cancer patients and partners--effects of role, gender and the dyad on couples' posttraumatic growth experience.

BACKGROUND/AIM: Little is known about factors influencing positive effects in couples facing a cancer diagnosis. METHODS: A heterogeneous sample of 224 couples from a multi-site study (four oncology units) completed questionnaire surveys including the Posttraumatic Growth Inventory (PTGI) as a measure of positive psychological effects. RESULTS: The data demonstrated that all three investigated factors--gender, role (patient vs partner) and the dyad (belonging to any of the 224 couples)--significantly contributed to variation in PTGI total scores and subscales. Variability between couples (factor dyad) appeared stronger than variability between patient and partner participants (factor role) and between male and female participants (factor gender). Role and gender analysis showed that patients demonstrated higher levels of posttraumatic growth than partners; and female participants scored higher on PTGI than males. Male patient-female partner pairs show greater association in their experience of posttraumatic growth than female patient-male partner pairs. Correlations also suggested that, regardless of the gender and role composition, patients and partners may experience parallel growth. CONCLUSIONS: Our findings indicate that positive psychological experiences may be shared by partners affected by cancer in similar ways as have been shown for negative psychological effects. Intra-couple similarities or processes may have a more important function in experiencing benefits than factors like gender or being the patient or the partner. These results underline the importance of a family approach to understanding negative and positive psychological effects of cancer.

Pictorial Representation of Illness and Self Measure (PRISM): A novel visual instrument to measure quality of life in dermatological inpatients.

OBJECTIVES: To validate the PRISM (Pictorial Representation of Illness and Self Measure) tool, a novel visual instrument, for the assessment of health-related quality of life in dermatological inpatients compared with the Dermatology Life Quality Index (DLQI) and the Skindex-29 questionnaires and to report qualitative information on PRISM. DESIGN: In an open longitudinal study, PRISM and Skindex-29 and DLQI questionnaires were completed and HRQOL measurements compared. SETTING: Academic dermatological inpatient ward. PARTICIPANTS: The study population comprised 227 sequential dermatological inpatients on admission. INTERVENTION: Patients completed the PRISM tool and the Skindex-29 and DLQI questionnaires at admission and discharge. MAIN OUTCOME MEASURES: PRISM Self-Illness Separation (SIS) score; Skindex-29 and DLQI scores; and qualitative PRISM information by Mayring inductive qualitative context analysis. RESULTS: The PRISM scores correlated well with those from the Skindex-29 (rho = 0.426; P < .001) and DLQI (rho = 0.304; P < .001) questionnaires. Between PRISM and Skindex-29 scores, the highest correlations were for dermatitis (rho = 0.614) and leg ulcer (rho = 0.554), and between PRISM and DLQI scores, the highest correlations were for psoriasis (rho = 0.418) and tumor (rho = 0.399). The PRISM tool showed comparable or higher sensitivity than quality of life questionnaires to assess changes in the burden of suffering during hospitalization. Inductive qualitative context analysis revealed impairment of adjustment and self-image as major aspects. Patients overall expected symptomatic and functional improvement. In patients with psoriasis and leg ulcers, many expected no treatment benefit. CONCLUSIONS: The PRISM tool proved to be convenient and reliable for health-related quality of life assessment, applicable for a wide range of skin diseases, and correlated with DLQI and Skindex-29 scores. With the PRISM tool, free-text answers allow for the assessment of individual information and potentially customized therapeutic approaches.

Positive personal changes in the aftermath of head and neck cancer diagnosis: a qualitative study in patients and their spouses.

BACKGROUND: There is increasing evidence that serious and life-threatening illnesses such as malignant tumors not only can lead to increased psychological stress, but also can lead to positive changes. METHODS: In this qualitative study, 31 patients with head and neck cancer and 25 women partners were interviewed with regard to positive personal changes (posttraumatic growth). The audiotaped responses were analyzed using qualitative context analysis. RESULTS: A total of 25 patients (81%) and their women partners (84%) reported positive changes. Qualitative content analysis revealed 3 different categories of growth: attitudes toward life, personal strength, and relationships. Partners reported significantly more positive changes in relationships, especially, within the partnership. The total amount of positive change was almost equal. CONCLUSION: Positive personal changes are frequently reported by patients and by significant others. The total amount of positive change is almost equal in patients and their women partners, but wives experience more positive changes within the partnership.

Quality of life and psychiatric morbidity in patients successfully treated for oral cavity squamous cell cancer and their wives.

PURPOSE: To assess quality of life (QOL) and psychiatric morbidity in successfully treated oral cavity squamous cell cancer (OC-SCC) survivors and their wives. PATIENTS AND METHODS: Thirty-one men successfully treated for OC-SCC (mean, 3.7 years since diagnosis; UICC stages I to IV) together with their wives were assessed by questionnaires referring to QOL (WHOQOL-BREF), physical complaints (EORTC QOL-H&N35), and symptoms of anxiety and depression (HADS). Prevalence of psychiatric disorders was assessed by the Mini International Neuropsychiatric Interview (M.I.N.I.). RESULTS: Irrespective of tumor stage, a considerably high global QOL both in OC-SCC survivors and their wives could be detected when compared with an age-matched cancer-free population. No significant difference between the mean scores of 4 domains of the QOL (exception: environmental domain) was found between patients and their wives. In patients, lower QOL was associated with more physical complaints (social eating, swallowing, and pain) and higher levels of psychological distress (HADS); whereas in wives, QOL was found to be related to levels of psychological distress. In the M.I.N.I., a high prevalence of psychiatric disorders, particularly anxiety disorders, was found in wives (38.7%); but was lower in patients (16.2%). Patients and wives diagnosed with a psychiatric disorder reported significantly lower QOL. CONCLUSION: Both in OC-SCC patients and their wives a considerably high overall QOL can be found. "Social eating," "swallowing," and "sexuality" in patients and psychiatric disorders in wives seem to be strongly related to global QOL. The high prevalence of anxiety disorders in wives, however, should alert clinicians and the health care community. Thus, surgical improvement of somatic problems and treatment of psychiatric disorders should be addressed in individuals reporting an impaired global QOL.

Screening cancer patients' families with the distress thermometer (DT): a validation study.

Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services.

Psychiatric morbidity and quality of life in wives of men with long-term head and neck cancer.

The diagnosis of cancer not only affects the lives of patients but also the lives of their relatives. The aim of this study was to investigate the prevalence of psychiatric disorders and quality of life (QoL) among wives of patients treated for head and neck cancer (HNC). We examined 31 wives of patients treated for HNC from January 1998 to December 2004 (meantime since diagnosis 3.7 years) by questionnaires with regard to quality of life (WHOQOL-BREF), quality of the relationship (Dyadic Adjustment Scale), and affective symptoms (Hospital Anxiety and Depression Scale, HADS). Prevalence of psychiatric morbidity was measured by the Mini International Neuropsychiatric Interview (MINI). Results indicated that QoL and satisfaction with the relationship were comparable to the normal population. HADS mean scores showed no clinically relevant levels of depression and anxiety. A high prevalence of psychiatric disorders (38.7%, particularly agoraphobia) was found in the MINI. Wives diagnosed with an anxiety disorder reported significantly lower QoL compared to those without. The results of this study suggest that agoraphobia is a frequent psychiatric disorder seen in wives of HNC patients. Diagnosis of HNC can have a strong impact on the mental health of the spouse and should be taken in account in counselling of HNC patients.

Coping with serious accidental injury: a one-year follow-up study.

BACKGROUND: The aim of this study was to analyze changes of coping strategies in severely injured accident victims over time and to compare patients with high and low posttraumatic stress disorder (PTSD) symptom levels with regard to their coping patterns and accident-related cognitions. METHODS: 106 consecutive patients with severe accidental injuries admitted to a trauma surgery intensive care unit (ICU) were assessed within 1 month after the trauma and 6 and 12 months later. Assessments included a clinical interview, the Freiburg Questionnaire of Coping with Illness, the patients' accident-related cognitions, the Clinician-Administered PTSD Scale, the 90-item revised Symptom Checklist (SCL-90-R), and the Sense of Coherence Questionnaire (SOC). Patients who met the criteria for either full or subsyndromal PTSD at least once over the observation period (36 subjects; 34.0%) were assigned to a highly symptomatic group (HSG), the remainder (70 subjects; 66.0%) to a less symptomatic group. RESULTS: Overall, active problem-focused coping was predominant immediately after the accident and declined over time, with a stronger decrease in the HSG. Patients in the HSG scored higher on the SCL Global Severity Index and lower on the SOC. The patients' subjective appraisal of accident severity was higher in the HSG, whereas there was no group difference with regard to accident-related variables such as type of accident, injury severity and mild to moderate traumatic brain injury. CONCLUSIONS: Active problem-focused coping, although utilized most frequently and often regarded as protective, might be an inadequate strategy in face of acute stress following a severe accident. Clinicians should not expect their patients to cope very actively in the acute ICU phase. In the subsequent rehabilitation, active coping seems to be more adaptive.