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Cancer survivors may be struggling to re-create meaning in life. Addressing their personal sources of meaning can support them in this process. The sources of meaning card method (SoMeCaM) aims to map and explore personal sources of meaning in a 1-h session. It includes 26 cards, each with a statement on a source of meaning. The purpose of this study was to validate the statements on the sources of meaning cards for use among participants in cancer rehabilitation by examining whether participants attribute the same meaning to the statements as intended. The three step test interview method was used to assess response processes to the sources of meaning cards among 12 participants in a 5-day cancer rehabilitation program in Denmark. The interviews were transcribed verbatim and analyzed using framework analysis. Nineteen of the 26 statements were interpreted congruently, that is, in line with the underlying theory, by all participants. Issues of incongruency, ambiguity and confusion were observed in participants' interpretations of the statements on religiosity (n = 6), spirituality (n = 10), and reason (n = 6). Minor issues were observed for the statements on practicality, achievement, knowledge, and attentiveness. In most statements, cancer survivors' interpretation aligned with the underlying theory. Problems were apparent regarding the sources of meaning religiosity, spirituality and reason, and a reconsideration of the wording of the statements is recommended. These problems may be due to cultural and linguistic interpretations rather than to being a cancer survivor. Future studies could focus on these issues in other target populations. Despite these minor issues, the SoMeCaM has proven useful in addressing the important topic of meaning in life in the cancer rehabilitation setting. Clinicians should pay attention to nuances in participants' understanding of the cards.
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AIMS: Modern clinical management of patients with an implantable cardioverter defibrillator (ICD) largely consists of remote device monitoring, although a subset is at risk of mental health issues post-implantation. We compared a 12-month web-based intervention consisting of goal setting, monitoring of patients' mental health-with a psychological intervention if needed-psychoeducational support from a nurse, and an online patient forum, with usual care on participants' device acceptance 12 months after implantation. METHODS AND RESULTS: This national, multi-site, two-arm, non-blinded, randomized, controlled, superiority trial enrolled 478 first-time ICD recipients from all 6 implantation centres in Denmark. The primary endpoint was patient device acceptance measured by the Florida Patient Acceptance Survey (FPAS; general score range = 0-100, with higher scores indicating higher device acceptance) 12 months after implantation. Secondary endpoints included symptoms of depression and anxiety. The primary endpoint of device acceptance was not different between groups at 12 months [B = -2.67, 95% confidence interval (CI) (-5.62, 0.29), P = 0.08]. Furthermore, the secondary endpoint analyses showed no significant treatment effect on either depressive [B = -0.49, 95% CI (-1.19; 0.21), P = 0.17] or anxiety symptoms [B = -0.39, 95% CI (-0.96; 0.18), P = 0.18]. CONCLUSION: The web-based intervention as supplement to usual care did not improve patient device acceptance nor symptoms of anxiety and depression compared with usual care. This specific web-based intervention thus cannot be recommended as a standardized intervention in ICD patients.
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Desfibriladores Implantáveis , Qualidade de Vida , Humanos , Ansiedade/prevenção & controle , Ansiedade/psicologia , Atenção à Saúde , Internet , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
AIMS: (a) To investigate support for caregivers of people diagnosed with stroke, cancer, chronic obstructive pulmonary disease (COPD), dementia, or heart disease provided across healthcare settings in Denmark; (b) to assess differences in caregiver support across diagnoses and settings. METHODS: A cross-sectional nationwide survey among professionals representing healthcare settings at municipalities (n = 479) and hospital wards and outpatient clinics (n = 425). The survey assessed identification of caregivers and support initiatives. RESULTS: The response rate was 81% for municipalities and 49% for hospitals. Identification of caregivers was frequent in dementia care (81% and 100%) and less frequent in COPD care (58% and 64%) in municipalities and hospitals, respectively. Caregiver support differed significantly across diagnoses within municipalities (p = 0.009) and hospitals (p < 0.001). Systematic identification of vulnerable caregivers was <25% for all diagnoses except dementia. The most common support initiatives involving caregivers were primarily aimed at the ill person and included guidance about the disease and consequences for everyday life and lifestyle changes. Caregivers were least involved in support initiatives addressing physical training, work retention, sexuality, or cohabitation. CONCLUSIONS: Disparities and significant differences across diagnoses exist in the identification of caregivers and the provision of support initiatives. Support initiatives involving caregivers primarily targeted patients. Future studies should investigate how caregivers' needs can be met across different diagnoses and healthcare settings and investigate potential changes in caregivers' needs during disease trajectories. In clinical practice, identification of vulnerable caregivers should be a major focus, and disease-specific clinical guidelines may be required to ensure sufficient support for caregivers.
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BACKGROUND: Patient-centred care (PCC) including collaborative practices is the core component of modern health care. Despite this, it has proven difficult to implement. AIMS: To examine (1) healthcare professionals' (HCPs') perception of whether they perceive a PCC culture, their attitudes towards involving patients in decisions and their experiences of barriers for PCC; and (2) variables that may contribute to explain differences in perceived person-centred culture. METHODS: A questionnaire survey of HCPs from 27 different departments from two university hospitals in Denmark. HCPs were eligible if they held a profession as physician, Registered Nurse, nurse assistant, physiotherapist, occupational therapist, dietician, midwife or psychologist and excluded if they reported not being involved in patient treatment and care. The questionnaire consisted of four items from the Context Assessment Index (CAI). The remaining items were purpose-designed. RESULTS: In total 1140 (24% response rate) HCPs completed the questionnaire and were included in the analyses. Most of the HCPs perceived a culture of PCC (e.g. 91% agreed or agreed to a high degree that patients were provided with opportunities to participate in decisions). Most HCPs also held positive attitudes towards involving patients in decisions. Time and prioritisation from the management were perceived as barriers for PCC, and many HCPs also believed that involving patients in decisions could be difficult for the patients. The HCPs who were least involved in treatment and care, and working in the acute setting or in surgery, were least likely to perceive a PCC culture. HCPs with the longest or shortest educations, and HCPs working primarily with outpatients or with planned inpatients, were most likely to perceive a person-centred culture. CONCLUSION: The HCPs generally perceived a culture of PCC and held positive attitudes towards involving patients in decisions. To further promote PCC, time and prioritisation must be invested at an organisational level.
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Atitude do Pessoal de Saúde , Pessoal de Saúde , Estudos Transversais , Hospitais Universitários , Humanos , Assistência Centrada no PacienteRESUMO
OBJECTIVE: Herceptin treatment improves survival and reduces the risk of recurrence in human epidermal growth factor receptor 2 (HER2)-positive breast cancer. Yet, it increases women's risk of developing burdensome cardiovascular complications. This study examines how women experience living with HER2-positive breast cancer and the risk of incident heart disease. METHODS: Danish women with breast cancer (n = 12; aged 32-75) participated in semi-structured interviews. Themes were deducted using interpretative phenomenological analysis (IPA). RESULTS: Women described breast cancer as having strong associations with death, whereas heart disease to them meant decreased physical functioning or "something fixable." MUGA scans of the heart during the treatment course made them feel safe, and generally, they did not worry about risk of heart disease. Coping strategies included the following: focus on the good aspects of herceptin and acceptance of risk of heart disease as the price to pay to survive. The two most predominant coping strategies used were information and avoidance. CONCLUSION: The women's focus on cancer as the primary disease seems partly to be the result of a complex coping process, by which they dealt with the dilemma of weighing risks, where the risk of dying from breast cancer was perceived as the biggest risk.
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Adaptação Psicológica , Antineoplásicos Imunológicos/uso terapêutico , Atitude Frente a Saúde , Neoplasias da Mama/tratamento farmacológico , Cardiopatias/induzido quimicamente , Trastuzumab/uso terapêutico , Adulto , Idoso , Neoplasias da Mama/metabolismo , Feminino , Imagem do Acúmulo Cardíaco de Comporta , Cardiopatias/diagnóstico por imagem , Humanos , Pessoa de Meia-Idade , Recidiva Local de Neoplasia , Pesquisa Qualitativa , Receptor ErbB-2/metabolismo , Risco , Taxa de SobrevidaRESUMO
BACKGROUND: Being able to generalize research findings to a broader population outside of the study sample is an important goal in surveys on the internet. We conducted a nationwide, cross-sectional, web-based survey with vignettes illustrating different levels of patient involvement to investigate men's preferences regarding participation in health care decision-making. Following randomization into vignette variants, we distributed the survey among men aged 45 to 70 years through the state-authorized digital mailbox provided by the Danish authorities for secure communication with citizens. OBJECTIVE: This study aimed to investigate the sociodemographic representativeness of our sample of men obtained in a nationwide web-based survey using the digital mailbox. METHODS: Response rate estimates were established, and comparisons were made between responders and nonresponders in terms of age profiles (eg, average age) and municipality-level information on sociodemographic characteristics. RESULTS: Among 22,288 men invited during two waves, a total of 6756 (30.31%) participants responded to the survey. In adjusted analyses, responders' characteristics mostly resembled those of nonresponders. Response rates, however, were significantly higher in older men (odds ratio [OR] 2.83 for responses among those aged 65-70 years compared with those aged 45-49 years, 95% CI 2.58-3.11; P<.001) and in rural areas (OR 1.10 compared with urban areas, 95% CI 1.03-1.18; P=.005). Furthermore, response rates appeared lower in areas with a higher tax base (OR 0.89 in the highest tertile, 95% CI 0.81-0.98; P=.02). CONCLUSIONS: Overall, the general population of men aged 45 to 70 years was represented very well by the responders to our web-based survey. However, the imbalances identified highlight the importance of supplementing survey findings with studies of the representativeness of other characteristics of the sample like trait and preference features, so that proper statistical corrections can be made in upcoming analyses of survey responses whenever needed.
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Tomada de Decisões/ética , Participação do Paciente/métodos , Idoso , Estudos Transversais , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Fatores Socioeconômicos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Prostate-Specific Antigen (PSA) screening for early detection of prostate cancer (PCa) may prevent some cancer deaths, but also may miss some cancers or lead to unnecessary and potentially harmful treatment. Therefore, involving patients in decision-making about PSA screening is recommended. However, we know little about the attitude of men regarding participation in decisions about PSA screening and how to assess such attitudes. The purpose of this paper is to describe patient and public participation in the development of a national, web-based case vignette survey for studying men's view on participation in decision-making about PSA screening. METHODS: The project group developed a first draft plan for the survey, its vignettes and choice of measurements. This included multiple vignette variants representing various levels of patient participation in decision-making about PSA screening with different outcomes. Additionally, it included questions on respondents' satisfaction with imagined courses of health care, their propensity to initiate a malpractice complaint, their own health care experiences, socio-demography, personality, and preferences for control regarding health care decision-making. Following feedback from a workshop with academic peers on the draft plan, a group of 30 adult men was engaged to help develop case vignette versions and questionnaire items by providing feedback on structure, comprehension, response patterns, and time required to complete the survey. Furthermore, a panel of three patients with PCa experience was assembled to assist development through a separate review-and-feedback process. RESULTS: Based on reviews of survey drafts, the large group made further suggestions about construction of the survey (e.g. clarification and modification of case vignette versions, deletion of items and adjustment of wording, instructions to guide respondents, replacement of technical terms, and optimization of sequence of survey elements). The patient panel ensured fine-tuning of vignette versions and questionnaire items and helped review the internet version of the survey. CONCLUSIONS: Patient and public involvement during various phases of the survey development helped modify and refine survey structure and content. The survey exemplifies a way to measure health care users' satisfaction with imagined courses of health care and wish to complain, taking into account their characteristics.
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Neoplasias da Próstata , Adulto , Idoso , Tomada de Decisões , Detecção Precoce de Câncer , Humanos , Masculino , Programas de Rastreamento , Homens , Pessoa de Meia-Idade , Participação do Paciente , Pacientes , Antígeno Prostático Específico , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: Specialized palliative care (SPC) interventions increasingly include patient-caregiver dyads, but their effects on dyadic coping are unknown. We investigated whether an SPC and dyadic psychological intervention increased aspects of dyadic coping in patients with advanced cancer and their caregivers, whether dyad characteristics moderated effects and whether aspects of dyadic coping mediated significant intervention effects on caregivers' anxiety and depression. METHODS: We randomized 258 patients with incurable cancer and their caregivers to care as usual or accelerated transition from oncological treatment to home-based SPC and dyadic psychological support. In secondary outcome analyses, using mixed-effects models, we estimated intervention effects and 95% confidence intervals (CIs) for communication of stress and common coping, and moderation by dyad type and demographics. In path analyses, we investigated whether stress communication and common coping mediated intervention effects on caregivers' symptoms of anxiety and depression. (Clinicaltrials.gov NCT01885637). RESULTS: The intervention significantly increased common coping in patients and caregivers in couples (estimated difference, 0.68; 95% CI, 0.11 to 1.24) and stress communication by partner caregivers (0.97; 0.24 to 1.24). We found some support for different intervention effects for spouses and other dyads, but no evidence of mediation. CONCLUSIONS: Specialized palliative care and dyadic psychological intervention may affect aspects of dyadic coping. Common coping and stress communication did not mediate the previously found significant intervention effects on caregiver anxiety and depression, indicating that other mechanisms may have been central in the intervention.
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Cuidadores/psicologia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Adaptação Psicológica , Adulto , Idoso , Ansiedade/psicologia , Depressão/psicologia , Feminino , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
PURPOSE: To examine the associations between pharmaceutically treated anxiety and depression present in the year prior to breast cancer diagnosis and the risk of incident cardiovascular disease (CVD), while controlling for traditional cardiovascular risk factors and clinical characteristics in a population-based observational study. METHODS: Adult 1-year breast cancer survivors (n = 7227), diagnosed between 01-01-1999 and 12-31-2010, with no history of CVD, were selected from the Netherlands Cancer Registry. Drug dispensing data were derived from the PHARMO Database Network and used as proxy for CVD, anxiety, and depression. By multivariable Cox regression analysis, we examined the risk associated with pharmaceutically treated anxiety and depression for developing CVD after cancer diagnosis, adjusting for age, pharmaceutically treated hypertension, hypercholesterolemia, and diabetes mellitus in the year prior to cancer diagnosis, tumor stage, and cancer treatment. RESULTS: During the 13-year follow-up period, 193 (3%) breast cancer survivors developed CVD. Women pharmaceutically treated for anxiety in the year prior to their cancer diagnosis had a 48% increased hazard for CVD [HR = 1.48; 95% CI 1.05-1.08] after full adjustment. This association was restricted to breast cancer survivors who were 65 years or younger. Depression was not associated with CVD risk [HR = 0.89; 95% CI 0.52-1.53]. Older age [HR = 1.06; 95% CI 1.05-1.08], hypertension [HR = 1.80; 95% CI 1.32-2.46], and hypercholesterolemia [HR = 1.63; 95% CI 1.15-2.33] were associated with an increased hazard for incident CVD, whereas hormone therapy [HR = 0.59; 95% CI 0.42-0.83] was protective. CONCLUSIONS: Anxiety present in the year prior to breast cancer diagnosis increases the risk of incident CVD in 1-year breast cancer survivors, after adjustment for depression, traditional cardiovascular risk factors, and clinical characteristics.
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Ansiedade/psicologia , Neoplasias da Mama/complicações , Neoplasias da Mama/psicologia , Sobreviventes de Câncer , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/etiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/tratamento farmacológico , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/epidemiologia , Depressão , Feminino , Seguimentos , Inquéritos Epidemiológicos , Humanos , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Prognóstico , Sistema de Registros , Medição de Risco , Fatores de Risco , Adulto JovemRESUMO
BACKGROUND: A breast cancer (BC) diagnosis can profoundly affect the sex life of patient and partner within a couple. The purpose of the present study is to examine whether individual and partner sexual functioning, affectionate behavior, emotional closeness and depressive symptoms are associated with change over time in satisfaction with sex life of sexually active heterosexual couples dealing with BC and to explore whether the associations differ between patients and partners after adjustment for basic sociodemographic characteristics, comorbidity and BC treatment. MATERIAL AND METHODS: Women with BC and their male partners participated in a longitudinal study (Time 1, ≤4 months after surgery; Time 2, 5 months later). Participants completed items from the PROMIS® Sexual Function and Satisfaction measure (version 1.0), two items measuring affectionate behavior, a single item measuring emotional closeness and the Center for Epidemiologic Studies-Depression Scale. Registers provided sociodemographic and medical information. Multilevel models were used, which take the interdependency of couples' scores into account. RESULTS: A total of 287 sexually active couples were included in the analyses. Less vaginal discomfort and more vaginal lubrication were associated with increases in patients' satisfaction with sex life. Patients' and partners' satisfaction increased with higher ratings of their own orgasm ability and of partners' timing of ejaculation. Patients' reports of affectionate behavior were positively associated with their partners' satisfaction, and vice versa for partners. Patients' satisfaction increased the more emotional closeness their partner experienced. Partners' depressive symptoms were negatively associated with their satisfaction. Sociodemographic factors and BC treatment were not significantly associated with change in satisfaction. CONCLUSION: Satisfaction with sex life in sexually active couples dealing with BC needs to be seen as a couple issue. Health professionals should take the partner into account when addressing sexuality issues. Couples' functioning and relationship-related factors may be promising targets for couple interventions.
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Neoplasias da Mama/psicologia , Satisfação Pessoal , Comportamento Sexual , Idoso , Depressão/psicologia , Emoções , Feminino , Heterossexualidade , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: In 2002, the Danish Cancer Society opened a rehabilitation centre in which cancer patients were offered a free, six-day, multidimensional residential course. Our previous studies of the effects of this course at one and six months of follow-up showed no positive effect on distress. We investigated long-term effects at 12 months of follow-up and whether subgroups with fewer psychosocial resources received more benefit from the intervention than patients with better resources. MATERIAL AND METHODS: In two Danish counties, 507 patients with breast, prostate, colon or rectum cancer diagnosed within the past two years who had completed primary treatment were randomised to a six-day, multidimensional residential rehabilitation course or to standard care. Of these, 208 patients received the allocated intervention and 244 received the allocated control condition and were included in the analyses. Patients in both groups completed questionnaires at baseline and at one, six and 12 months of follow-up, including the 'Profile of Mood States short form', the 'General Self-efficacy' scale and a question on emotional support. At 12 months of follow-up, 179 participants in the intervention group and 195 in the control group provided data. RESULTS: No effect of the intervention was found on distress at 12 months of follow-up, even in subgroups with fewer psychosocial resources at baseline, i.e. greater baseline distress, poorer self-efficacy and less emotional support. CONCLUSION: Multidimensional rehabilitation programmes may not be effective in the treatment of distress. During the past few decades, studies of psychotherapy or psycho-education in cancer patients have shown small to moderate effects. More focused rehabilitation programmes may be more effective.
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Neoplasias da Mama/reabilitação , Neoplasias do Colo/reabilitação , Neoplasias da Próstata/reabilitação , Neoplasias Retais/reabilitação , Estresse Psicológico/terapia , Adulto , Afeto , Idoso , Neoplasias da Mama/psicologia , Neoplasias do Colo/psicologia , Dinamarca , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/psicologia , Qualidade de Vida , Neoplasias Retais/psicologia , Autoeficácia , Apoio Social , Inquéritos e Questionários , Sobreviventes , Fatores de TempoRESUMO
OBJECTIVE: Little is known about the development of psychological wellbeing over time among women who have been treated for breast cancer. The aim of this study was to identify distinct patterns of distress, anxiety, and depression in such women. METHODS: We invited 426 consecutive women with newly diagnosed primary breast cancer to participate in this study, and 323 (76%) provided information on distress ('distress thermometer') and on symptoms of anxiety and depression ('hospital anxiety and depression scale'). Semiparametric group-based mixture modeling was used to identify distinct trajectories of distress, anxiety, and depressive symptoms assessed the week before surgery and four and eight months later. Logistic regression analysis was used to evaluate the characteristics of women in the distinct groups. RESULTS: Although no sub-group of women with chronic severe anxiety or depressive symptoms was found, we did identify a sub-group of 8% of the women who experienced continuously severe distress. Young age, having a partner, shorter education, and receiving chemotherapy but not radiotherapy might characterize women whose psychological symptoms remain strong eight months after diagnosis. CONCLUSION: By looking beyond the mean, we found that 8% of the women experienced chronic severe distress; no sub-groups with chronic severe anxiety or depression were identified. Several socio-demographic and treatment factors characterized the women whose distress level remained severe eight months after diagnosis. The results suggest that support could be focused on relatively small groups of patients most in need.
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Ansiedade/diagnóstico , Neoplasias da Mama/psicologia , Depressão/diagnóstico , Estresse Psicológico/diagnóstico , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Antineoplásicos/administração & dosagem , Neoplasias da Mama/terapia , Dinamarca , Escolaridade , Feminino , Humanos , Estado Civil , Pessoa de Meia-Idade , Período Pós-Operatório , Período Pré-Operatório , Radioterapia , Encaminhamento e Consulta/estatística & dados numéricos , Análise de Regressão , Apoio Social , Estresse Psicológico/epidemiologia , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Participation bias may be a problem in couple-based psychosocial studies. Therefore, it is important to investigate the characteristics associated with participation. The aim of this study was to analyze whether participation in a longitudinal psychosocial questionnaire study among couples affected by breast cancer was associated with socioeconomic, breast cancer-specific, and other health-related characteristics of the patients and partners. METHODS: The analyzes are based on 2254 couples who were invited to participate in a nationwide survey on psychosocial adjustment among couples dealing with breast cancer. Participating couples (N = 792) were compared with non-participating couples (N = 1462) with regard to socioeconomic and health-related characteristics obtained from nationwide clinical and administrative registers. RESULTS: Associations were seen between various socioeconomic variables and couple participation. The patient characteristics older age (OR = 0.15 [95% CI = 0.07-0.55]), low education (OR = 1.95 [95% CI = 1.46-2.68]), disability pension (OR = 0.59 [95% CI = 0.39-0.55]), or non-western ethnicity (OR = 0.36 [95% CI = 0.15-0.82]) reduced couple participation. The partner characteristics older age (OR = 0.23 [95% CI = 0.15-0.43]), low education (OR = 1.67 [95% CI = 1.25-2.22]), receiving disability pension (OR = 0.46 [95% CI = 0.25-0.82]), non-western ethnicity (OR = 0.17 [95% CI = 0.06-0.49]), or high morbidity (OR = 0.76 [95% CI = 0.60-0.96]) also reduced couple participation. Furthermore, couples with low income (OR = 1.49 [95% CI = 1.16-1.95]) had reduced participation. No associations were found between couple participation and breast cancer-related variables. CONCLUSIONS: Socioeconomic characteristics of patients and partners, and morbidity of partners may influence participation in couple-based psychosocial breast cancer research. Breast cancer-related characteristics do not seem to influence participation.
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Neoplasias da Mama/psicologia , Parceiros Sexuais/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Etnicidade , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Ajustamento Social , Fatores Socioeconômicos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Two conceptually different morbidity outcomes unmet needs and health-related quality of life are used to identify cancer patients in need of clinical attention and to evaluate rehabilitation programmes. The knowledge on the interrelation between unmet needs and health-related quality of life is scarce. This paper studies the hypothesis that patient-perceived unmet needs of rehabilitation during the cancer trajectory are associated with decreased quality of life. MATERIAL AND METHODS: Based on registers, a Danish population-based cohort of adult, incident, mixed-site cancer patients diagnosed between 1 October 2007 and 30 September 2008 was established. At 14 months following diagnosis participants completed a questionnaire including health-related quality of life (EORTC QLQ C-30), psychological distress (POMS-SF), and unmet needs with regard to physical, emotional, family-oriented, sexual, work-related, and financial problems. Unmet needs were assessed through six ad hoc questions. RESULTS: Questionnaires were received from 3439 of 4947 patients, resulting in a response rate of 70%. The three most frequent cancer types were breast (28.4%), prostate (14.6%) and colorectal cancer (15.2%). Overall, 60.1% expressed an unmet need of rehabilitation in at least one area, physical and emotional problems being the most frequent (40.0% and 37.5%). For all scales of the EORTC QLQ C-30 and POMS, significant adjusted mean differences were observed between patients with unmet needs in at least one area and patients with no unmet needs (p-values < 0.001). These differences were well above levels usually considered clinically relevant. Further, impairment increased with increasing number of areas in which unmet needs were reported. DISCUSSION: We confirmed the hypothesis that patient-perceived unmet needs of rehabilitation during the cancer trajectory are associated with decreased quality of life. This study supports the use of unmet needs questions to identify patients in need of clinical attention. Interventions reducing cancer patients' perceived needs of rehabilitation may enhance quality of life.
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Neoplasias/psicologia , Neoplasias/reabilitação , Qualidade de Vida , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades/estatística & dados numéricos , População , Sistema de Registros/estatística & dados numéricos , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Although breast cancer (BC) may have negative psychological sequelae, it may also be experienced as an existential challenge, which can derive personal growth. Only one study has been conducted, however, on whether women with BC experience more post-traumatic growth (PTG) than BC-free women. We examined PTG in women with and without BC and whether the characteristics and treatment of BC were associated with PTG. MATERIAL AND METHODS: We used data from the questionnaire administered in the Diet, Cancer and Health cohort and included 774 women with BC and 666 randomly sampled BC-free women aged 63-81 years. PTG was measured with the PTG inventory, for which the women identified their own traumatic or life-changing event. Linear regression was used to compare PTG in women with and without BC and to examine the association between BC characteristics and treatment and PTG. RESULTS: Although women with BC experienced significantly more PTG in the domains 'appreciation of life' and 'relating to others' compared to BC-free women, no statistically significant difference in overall PTG was observed according to BC status, indicating that PTG is not limited to women with BC. Tumor size, number of positive lymph nodes, having undergone mastectomy and having received endocrine treatment were positively associated with overall PTG and/or specific PTG domains, implying that the severity of disease plays a role in the development of PTG. CONCLUSION: In order to avoid unnecessary pressure for personal growth, healthcare professionals should not expect that women with BC experience more PTG than BC-free women.
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Adaptação Psicológica/fisiologia , Idoso , Neoplasias da Mama/psicologia , Carcinoma/psicologia , Desenvolvimento da Personalidade , Transtornos de Estresse Pós-Traumáticos/psicologia , Idoso de 80 Anos ou mais , Neoplasias da Mama/complicações , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/reabilitação , Carcinoma/complicações , Carcinoma/epidemiologia , Carcinoma/reabilitação , Estudos de Coortes , Dinamarca/epidemiologia , Feminino , Humanos , Pessoa de Meia-Idade , Inventário de Personalidade , Qualidade de Vida , Transtornos de Estresse Pós-Traumáticos/etiologia , Transtornos de Estresse Pós-Traumáticos/reabilitação , Inquéritos e QuestionáriosRESUMO
BACKGROUND: A cancer diagnosis may lead to psychosocial problems and physical symptoms that can be relieved during rehabilitation. The aim of this study was to analyse patient-perceived unmet needs of rehabilitation close to time of diagnosis, i.e. frequencies of unmet needs and the association with sociodemographic characteristics, cancer type and treatment. MATERIAL AND METHODS: All adult residents of Denmark diagnosed with cancer for the first time from 1 May to 31 August 2010 were mailed a patient questionnaire two to five months following diagnosis. The study population was identified by use of national administrative registers. Data on rehabilitation, family situation, education, and cancer treatment were obtained from the questionnaire, while sex, birth year and cancer type were obtained from the Danish National Patient Registry. The association between each type of unmet needs and the variables sex, age, cancer diagnosis, treatment, education, cohabitation status, and children (living at home and away from home) was analysed using multiple logistic regression. RESULTS: Among the 4346 participants (64.7%) unmet needs were reported with regard to talking to patients in the same situation (24.1%), counselling with a psychologist (21.4%), physical rehabilitation (18.8%), practical help (17.3%), and counselling related to work or education (14.8%). Differences were observed with regard to type of unmet needs, sociodemographic and clinical characteristics, but generally, young age, male sex, low educational level and living alone increased the adjusted odds ratios of unmet needs. Breast cancer and to some extent melanoma cancer decreased the odds. CONCLUSION: Unmet needs of rehabilitation are frequent during the early cancer trajectory and sociodemographic and clinical inequalities exist. The results support guideline recommendations of integration of cancer rehabilitation from the beginning of the cancer trajectory. Early interventions tailored to men, patients with low educational level, living alone, or treated with chemotherapy may help counterbalancing social and clinical inequalities in the long run.
Assuntos
Procedimentos Clínicos/normas , Necessidades e Demandas de Serviços de Saúde , Neoplasias/reabilitação , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Procedimentos Clínicos/organização & administração , Coleta de Dados , Dinamarca/epidemiologia , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades/estatística & dados numéricos , Neoplasias/epidemiologia , Neoplasias/terapia , Inquéritos e Questionários , Fatores de Tempo , Adulto JovemRESUMO
Objective: The aim of this study was to explore cardiac nurses' experiences with a comprehensive web-based intervention for patients with an implantable cardioverter defibrillator. Methods: We conducted an explorative qualitative study based on individual semi-structured interviews with 9 cardiac nurses from 5 Danish university hospitals. Results: We found one overall theme: "Between traditional nursing and modern eHealth". This theme was derived from the following six categories: (1) comprehensive content in the intervention, (2) patient-related differences in engagement, (3) following the protocol is a balancing act, (4) online communication challenges patient contact, (5) professional collaboration varies, and (6) an intervention with potential. Cardiac nurses were positive towards the web-based intervention and believe it holds a large potential. However, they felt challenged by not having in-person and face-to-face contact with patients, which they found valuable for assessing patients' wellbeing and psychological distress. Conclusion: Specific training in eHealth communication seems necessary as web-based care entails a shift in the nursing role and requires a different way of communication.InnovationFocusing on the user experience in web-based care from the perspective of cardiac nurses is innovative, and by applying implementation science this leads to new knowledge to consider when developing and implementing web-based care.
RESUMO
OBJECTIVE: Rehabilitation programmes are intended to help cancer patients achieve optimal functioning and live independently. We evaluated whether a psychosocial rehabilitation course was effective in relieving cancer patients' distress and improving their well-being. METHODS: Patients with breast, prostate or colorectal cancer diagnosed within 2 years who had finished primary treatment were randomised to usual care or a 6-day residential course of lectures, discussions and peer groups on issues related to treatment and living with cancer. Changes in self-reported distress (POMS-Sf) and quality of life (EORTC QLQ-C30) from baseline to 1 and 6 months' follow-up were measured. Analyses were adjusted for baseline scores of outcome, cancer site, time since diagnosis, gender, age and education. RESULTS: Of 507 patients, 452 were included in the analyses, 404 completed the 1-month and 394 the 6-month assessment. Patients in the control group showed greater decreases in total mood disturbance and subscales of the POMS-Sf and showed more improvement in emotional, cognitive and social functioning at both 1 and 6 months and in role functioning at 6 months than the intervention group. A similar pattern was observed in analyses of breast cancer patients only. CONCLUSION: A 6-day residential rehabilitation course did not relieve cancer patients' distress or improve their well-being.
Assuntos
Neoplasias/psicologia , Psicoterapia/métodos , Qualidade de Vida/psicologia , Apoio Social , Estresse Psicológico/reabilitação , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/reabilitação , Grupo Associado , Resultado do TratamentoRESUMO
OBJECTIVE: Short screening instruments have been suggested to improve the detection of psychological symptoms. We examined the accuracy of the Danish version of the 'Distress Thermometer'. METHODS: Between October 2008 and October 2009, 426 women with newly diagnosed primary breast cancer who were operated at the Breast Surgery Clinic of the Rigshospitalet, Copenhagen, were eligible for this study. Of these, 357 participated (84%) and 333 completed a questionnaire. The distress thermometer was evaluated against the 'hospital anxiety and depression scale' (HADS). We also examined the women's wish for referral for psychological support. RESULTS: A cut-off score of 6 vs 7 (low: ≤6, high: ≥7) on the distress thermometer was optimal for confirming distress, with a sensitivity of 42%, a specificity of 93%, a positive predictive value (PPV) of 78% and a negative predictive value (NPV) of 73%. A cut-off score of 2 vs 3 was optimal for screening, with a sensitivity of 99%, a specificity of 36%, a PPV of 47% and a NPV of 99%. Of those who were distressed using the cut-off score of 2 vs 3 on the distress thermometer, 17% (n = 41) wished to be referred for psychological support and 57% (n = 140) potentially wanted a later referral. CONCLUSION: The distress thermometer performed satisfactorily relative to the HADS in detecting distress in our study. A screening procedure in which application of the distress thermometer is a first step could be useful for identifying persons in need of support.
Assuntos
Ansiedade/diagnóstico , Neoplasias da Mama/psicologia , Depressão/diagnóstico , Estresse Psicológico/diagnóstico , Adulto , Idoso , Dinamarca , Feminino , Humanos , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Psicometria/instrumentação , Sensibilidade e Especificidade , Inquéritos e QuestionáriosRESUMO
Objective: Breast cancer may profoundly affect a couple's sex life. The present study examines whether patient-, partner- and relationship-related characteristics are associated with sexual activity of couples following breast cancer diagnosis in the treatment phase and over time. Methods: Women with breast cancer and their male cohabiting partners participated in a longitudinal study in Denmark. Logistic regression was used to examine associations of patient-, partner- and relationship-related characteristics at baseline (≤4 months following surgery) with couples' sexual activity at baseline, 5 and 12 months later. The longitudinal analyses were stratified for couples' sexual activity status at baseline. Results: A total of 722, 533 and 471 couples were included in the analyses at baseline, 5- and 12-months follow-up, respectively. Older age, depressive symptoms and lower vitality of patients were associated with lower odds of couples' sexual activity at baseline; chemotherapy treatment and older age of patients were associated with lower odds at 5-months follow-up in couples who were not sexually active at baseline. Higher ratings of emotional closeness, affectionate behavior and satisfaction with dyadic coping were associated with higher odds for sexual activity at baseline and over time in couples who were sexually active at baseline. Conclusion: Sexual counseling during cancer treatment and rehabilitation should include a couple perspective. Relationship-related variables may be a protective factor for remaining sexually active after breast cancer diagnosis. Interventions could focus on strengthening these factors. Health professionals also need to consider the patients' breast cancer treatment, vitality, and emotional distress in counselling on sexuality.