ABSTRACT
BACKGROUND: People with melanoma want and need effective interventions for living with fear of cancer recurrence (FCR). OBJECTIVES: This study reports the 12-month outcomes of a brief, psychological intervention designed to reduce FCR in people at high risk of developing another primary melanoma compared with usual care. METHODS: In this two-arm randomized controlled trial, adults previously diagnosed with stage 0, I or II melanoma were randomly allocated to the intervention (n = 80) or control (usual care) arm (n = 84). The trial was registered with the Australian and New Zealand Clinical Trials Registry on 19 March 2013 (registration: ACTRN12613000304730). The intervention comprised a 76-page psychoeducational resource and three individually tailored, telephone-based sessions with a psychologist, scheduled at specific time points around participants' dermatological appointments. The primary outcome was the level of self-reported fear of new or recurrent melanoma assessed at 12 months postintervention using the severity subscale of the Fear of Cancer Recurrence Inventory. RESULTS: Compared with the control arm, the intervention group reported significantly lower FCR at 12 months postintervention; the between-group mean difference was -1·41 for FCR severity [95% confidence interval (CI) -2·6 to -0·2; P = 0·02] and -1·32 for FCR triggers (95% CI -2·6 to -0·02; P = 0·04). The odds ratio for FCR severity scores ≥13 (54% intervention, 63% control) was 0·59 (95% CI 0·30-1·14, P = 0·12). There were no differences between groups in secondary outcomes, such as anxiety, depression or health-related quality of life. CONCLUSIONS: The previously reported 6-month benefits of this brief, patient-centred psychological intervention in reducing FCR were found to continue 12 months postintervention, with no known adverse effects, supporting implementation as part of routine melanoma care.
Subject(s)
Melanoma , Quality of Life , Adult , Australia , Fear , Follow-Up Studies , Humans , Melanoma/prevention & control , Neoplasm Recurrence, Local/prevention & control , New Zealand , Psychosocial InterventionABSTRACT
Lung cancer is a significant international health problem. Aligning clinical practice with evidence-based guideline recommendations has the potential to improve patient outcomes. This scoping review describes evidence-practice gaps across the diagnostic and management care pathway for lung cancer. We conducted searches of online databases Medline, PsychInfo, Cinahl and the Cochrane Library to identify studies published between 2008 and 2012. Of 614 articles screened, 65 met inclusion criteria. We identified seven evidence-practice gaps: (1) delays in timely diagnosis and referral; (2) curative and (3) palliative treatments are under-utilised; (4) older age and co-morbidities influence the use of treatments; (5) the benefits of multidisciplinary team review are not available to all lung cancer patients; (6) psychosocial needs are unmet; and (7) early referral to palliative care services is under-utilised. The scoping review highlighted three key messages: (1) there are significant challenges in the timely diagnosis and referral of lung cancer; (2) curative and palliative treatments, psychosocial support and palliative care are under-utilised in lung cancer management; and (3) variations in treatment utilisation appear to be associated with non-disease factors such as patient characteristics, provider practices and the organisation of health care services. Future research should focus on designing interventions to overcome variations in care.
Subject(s)
Lung Neoplasms , Medical Oncology , Professional Practice Gaps , Evidence-Based Medicine , Humans , Lung Neoplasms/diagnosis , Lung Neoplasms/therapy , Palliative Care , Psycho-Oncology/standards , Referral and Consultation/standardsABSTRACT
BACKGROUND: Receiving information about genomic risk of melanoma might trigger conversations about skin cancer prevention and skin examinations. OBJECTIVES: To explore conversations prompted by receiving personalized genomic risk of melanoma with family, friends and health professionals. METHODS: We used a mixed-methods approach. Participants without a personal history and unselected for a family history of melanoma (n = 103, aged 21-69 years, 53% women) completed questionnaires 3 months after receiving a personalized melanoma genomic risk assessment. Semistructured interviews were undertaken with 30 participants in high, average and low genomic risk categories, and data were analysed thematically. RESULTS: From the questionnaires, 74% of participants communicated their genomic risk information with family, and 49% with friends. Communication with a health professional differed by risk level: 41%, 16% and 12% for high, average and low risk, respectively (P = 0·01). Qualitative analysis showed that perceived 'shared risk' and perceived interest of family and friends were motivations for discussing risk or prevention behaviours. The information prompted conversations with family and health professionals about sun protection and skin checks, and general conversations about melanoma risk with friends. Reasons for not discussing with family included existing personal or family health concerns, or existing high levels of sun protection behaviour among family members. CONCLUSIONS: Personalized melanoma genomic risk information can prompt risk-appropriate discussions about skin cancer prevention and skin examinations with family and health professionals. Sharing this information with others might increase its impact on melanoma prevention and skin examination behaviours, and this process could be used to encourage healthy behaviour change within families.
Subject(s)
Melanoma/prevention & control , Physical Examination/psychology , Self-Examination/statistics & numerical data , Skin Neoplasms/prevention & control , Skin , Adolescent , Adult , Aged , Communication , Decision Making , Family Relations , Feasibility Studies , Female , Friends , Genome, Human , Humans , Male , Melanoma/genetics , Middle Aged , New South Wales , Pilot Projects , Professional-Patient Relations , Risk Assessment , Self Disclosure , Skin Neoplasms/genetics , Surveys and Questionnaires , Truth Disclosure , Young AdultABSTRACT
e-TC is an online intervention designed to address common psychosocial concerns of testicular cancer survivors. It aims to reduce anxiety, depression and fear of cancer recurrence by providing evidence-based information and psychological intervention. This paper details the development and pilot testing of e-TC. During pilot testing, 25 men (with varying psychological profiles) who had completed treatment for testicular cancer, 6 months to 5 years ago (which had not recurred), used e-TC over a 10-week period and provided quantitative and qualitative feedback on the feasibility and acceptability of the programme. Six men also completed a qualitative interview to provide detailed feedback on their experiences using e-TC. Fourteen men (56%) completed at least 80% of the programme. Participants reported a high level of satisfaction with the programme. Men's limited time was a barrier to programme use and completion, and participants suggested that men with a more recent diagnosis and a higher level of distress may be more likely to engage with the programme. e-TC appears to be a feasible and acceptable online intervention for survivors of testicular cancer. Findings from this study are currently being used to refine e-TC and guide the design of a larger efficacy study.
Subject(s)
Anxiety/therapy , Cancer Survivors/psychology , Cognitive Behavioral Therapy/methods , Depression/therapy , Stress, Psychological/therapy , Testicular Neoplasms/psychology , Adult , Anxiety/psychology , Depression/psychology , Feasibility Studies , Humans , Internet , Male , Middle Aged , Patient Acceptance of Health Care , Pilot Projects , Stress, Psychological/psychology , Therapy, Computer-Assisted/methodsABSTRACT
OBJECTIVE: To describe levels of, and relationships between, distress and psychosocial unmet needs in adolescents and young adults (AYAs) with a family member with cancer. METHODS: Adolescents and young adults (12-24 years old) with a living sibling or parent with cancer participated. Participants completed demographics, the Kessler 10 (K10) distress scale and the Sibling or Offspring Cancer Needs Instruments. Descriptive statistics were obtained for all measures, item-level frequencies were examined to identify common unmet needs, and relationships between distress and unmet needs were explored. RESULTS: Average sibling (N = 106) and offspring (N = 256) distress levels were in the high range (K10total = 22-30), with 29.6% and 31.6% in the very high range (K10total = 31-50), respectively. Siblings had mean = 19.7 unmet needs (range 0-45), 66% had ≥10 unmet needs, and 44% of the 45 needs were unmet on average. Offspring had mean = 22.4 unmet needs (range 0-47), 77% had ≥10 unmet needs, and 48% of the 47 needs were unmet on average. Strong positive correlations were found between K10 distress and the number of sibling/offspring unmet needs (r = 0.599 and r = 0.522, respectively, P = .00). CONCLUSIONS: Australian AYA siblings and offspring impacted by familial cancer experience high levels and numbers of unmet needs and substantial distress. Strong associations were found between increased distress and more unmet needs. Distress levels were comparable to AYAs seeking treatment for mental health issues. Insights into the type and number of needs experienced by AYA siblings and offspring will facilitate development and delivery of targeted, age-appropriate interventions, and resources for these vulnerable and underserved young people.
Subject(s)
Family/psychology , Health Services Needs and Demand/statistics & numerical data , Neoplasms/psychology , Social Support , Adaptation, Psychological , Adolescent , Anxiety/prevention & control , Australia , Female , Humans , Male , Neoplasms/therapy , Sibling Relations , Siblings/psychology , Young AdultABSTRACT
OBJECTIVE: Young people who have a parent with cancer experience elevated levels of psychological distress and unmet needs. In this study, we examined the associations between demographics, cancer variables and family functioning and levels of distress and unmet needs amongst young people who have a parent diagnosed with cancer. METHODS: Young people aged 12-24 years with a parent with cancer (n = 255) completed the Offspring Cancer Needs Instrument (unmet needs), the Kessler-10 (distress) and the Family Relationship Index (family functioning), along with measures of demographics and cancer variables (such as age, sex and time since cancer diagnosis). Variables associated with distress and unmet needs (including unmet need domains) were assessed using multiple linear regression. RESULTS: Being female and older, having more unmet cancer needs and poorer family functioning were associated with increased distress. Having a father with cancer, a shorter time since diagnosis and poor family functioning were associated with increased unmet needs. Family conflict and expressiveness were particularly important components of family functioning. Having a parent relapse with cancer was also associated with unmet needs in the domains of practical assistance, 'time out' and support from other young people who have been through something similar. CONCLUSIONS: Delineating factors associated with increased distress and unmet needs assist in identifying at-risk young people allowing improved assessment and tailoring of support to improve the psychosocial outcomes of young people impacted by parental cancer.
Subject(s)
Health Services Needs and Demand , Neoplasms/psychology , Parents , Stress, Psychological/psychology , Adolescent , Adult , Child , Family , Female , Humans , Male , Social Support , Socioeconomic Factors , Surveys and Questionnaires , Young AdultABSTRACT
PURPOSE: The purpose of this study was to assess the invariance of a culturally competent multi-lingual unmet needs survey. METHODS: A cross-sectional study was conducted among immigrants of Arabic-, Chinese- and Greek-speaking backgrounds, and Anglo-Australian-born controls, recruited through Cancer Registries (n = 591) and oncology clinics (n = 900). The survey included four subscales, with newly developed items addressing unmet need in culturally competent health information and patient support (CCHIPS), and items adapted from existing questionnaires addressing physical and daily living (PDL), sexuality (SEX) and survivorship (SURV) unmet need. The survey was translated into Arabic, Chinese and Greek. Rasch analysis was carried out on the four domains. RESULTS: Whilst many items were mistargeted to less prevalent areas of unmet need, causing substantial floor effects in person estimates, reliability indices were acceptable. The CCHIPS domain showed differential item functioning (DIF) for cultural background and language, and the PDL domain showed DIF for treatment phase and gender. The results for SEX and SURV domains were limited by floor effects and missing responses. All domains showed adequate fit to the model after DIF was resolved and a small number of items were deleted. CONCLUSIONS: The study highlights the intricacies in designing a culturally competent survey that can be applied to culturally and linguistically diverse groups across different treatment contexts. Overall, the results demonstrate that this survey is somewhat invariant with respect to these factors. Future refinements are suggested to enhance the survey's cultural competence and general validity.
Subject(s)
Cultural Competency , Health Services Needs and Demand , Health Status Disparities , Healthcare Disparities , Needs Assessment , Neoplasms/epidemiology , Adult , Aged , Australia , Cross-Sectional Studies , Culture , Emigrants and Immigrants , Ethnicity , Female , Humans , Language , Male , Middle Aged , Quality of Life , Reproducibility of Results , Sexual Behavior , Surveys and Questionnaires , White PeopleABSTRACT
BACKGROUND: Cancer patients need to trust their oncologist to embark in the process of oncologic treatment. Yet, it is unclear how oncologist communication contributes to such trust. The aim of this study was to investigate the effect of three elements of oncologists' communication on cancer patients' trust: conferring competence, honesty, and caring. METHODS: Eight videotaped consultations, 'vignettes', were created, reflecting an encounter between an oncologist and a patient with colorectal cancer. All vignettes were identical, except for small variations in the oncologist's verbal communication. Cancer patients (n = 345) were randomly assigned to viewing two vignettes, asked to identify with the patient and afterwards to rate their trust in the observed oncologist. The effects of competence, honesty, and caring on trust were established with multilevel analysis. RESULTS: Oncologist's enhanced expression of competence (ß = 0.17, 95% CI 0.08, 0.27; P < 0.001), honesty (ß = 0.30, 95% CI 0.20, 0.40; P < 0.001), as well as caring (ß = 0.36, 95% CI 0.26, 0.46; P < 0.001) resulted in significantly increased trust. Communication of honesty and caring also increased patients' expectation of operation success and reported willingness to recommend the oncologist. CONCLUSION(S): As hypothesized, oncologists can influence their patients' trust by enhanced conveyance of their level of competence, honesty, and caring. Caring behavior has the strongest impact on trust. These findings can be translated directly into daily clinical practice as well as in communication skills training.
Subject(s)
Neoplasms/psychology , Patients/psychology , Physician-Patient Relations , Trust/psychology , Adult , Aged , Aged, 80 and over , Communication , Female , Humans , Male , Medical Oncology , Middle Aged , Neoplasms/pathology , Physicians/psychology , Videotape RecordingABSTRACT
OBJECTIVE: The aim of this study was to describe the trajectory of physical symptoms, coping styles and quality of life (QoL) and the relationship between coping and QoL over the last year of life in women with recurrent ovarian cancer. METHODS: The patient cohort were women recruited to the Australian Ovarian Cancer Study who subsequently experienced recurrent, invasive ovarian cancer and completed at least one psychosocial assessment (optimism, minimisation, hopelessness/helplessness, QoL) during the last year of life (n=217). RESULTS: QoL declined sharply from six months before death. Lack of energy was the most prevalent symptom over three measurement periods (67-92%) and also the most severe. Anorexia (36-55%), abdominal swelling (33-58%), nausea (26-47%) and pain (26-43%) all increased in prevalence and severity towards the end of life. Higher optimism (p=0.009), higher minimisation (p=0.003) and lower helplessness/hopelessness (p=0.03) at baseline were significant predictors of subsequent higher QoL. CONCLUSIONS: Progressive deterioration in quality of life may be an indicator of death within about six months and therefore should be an important consideration in decisions about subsequent treatment. Coping styles which independently predicted subsequent changes in QoL could potentially be targeted by interventions to minimise worsening QoL.
Subject(s)
Adaptation, Psychological , Neoplasm Recurrence, Local/physiopathology , Neoplasm Recurrence, Local/psychology , Ovarian Neoplasms/physiopathology , Ovarian Neoplasms/psychology , Female , Humans , Middle Aged , Neoplasm Recurrence, Local/therapy , Ovarian Neoplasms/therapy , Prospective Studies , Quality of LifeABSTRACT
PURPOSE: Social suffering, language difficulties, and cultural factors may all make the cancer experience more difficult for immigrants. This study aimed to document unmet needs, and variables associated with these, in a population-based sample of first-generation immigrants and Anglo-Australians who had survived cancer. METHODS: Participants were recruited via Australian cancer registries. Eligible cancer survivors had a new diagnosis 1-6 years earlier and were aged between 18 and 80 years at diagnosis. Eligible immigrant participants and parents were born in a country where Arabic, Chinese (Mandarin, Cantonese, and other dialects), or Greek is spoken, and they spoke one of these languages. A random sample of English-speaking Anglo-Australian-born controls was recruited. RESULTS: Five hundred ninety-six patients (277 immigrants) were recruited to the study (response rate, 26%). Compared to Anglo-Australians, the adjusted odds ratio of Chinese immigrants for at least one unmet information/support need was 5.1 (95% CI 3.1, 8.3) and for any unmet physical need was 3.1 (95% CI 1.9, 5.1). For Greek, these were 2.0 (95% CI 1.1, 4.0) and 2.7 (95% CI 1.4, 5.2). Arabic patients had elevated, but not statistically significant, odds ratios compared to Anglo-Australians. Written information and having a specialist, support services, and other health professionals who spoke their language were in the top ten unmet needs amongst immigrants. CONCLUSION: Immigrant cancer survivors, several years after initial diagnosis, are more likely to have an unmet need for information or for help with a physical problem than Anglo-Australians. They strongly desire information and support in their own language.
Subject(s)
Cultural Competency/psychology , Emigrants and Immigrants/psychology , Health Services Needs and Demand , Needs Assessment , Neoplasms/psychology , Survivors/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Australia/epidemiology , Communication Barriers , Cross-Sectional Studies , Emigrants and Immigrants/statistics & numerical data , Female , Humans , Male , Middle Aged , Neoplasms/ethnology , Prevalence , Stress, Psychological/ethnology , Stress, Psychological/psychology , Survivors/statistics & numerical data , Young AdultABSTRACT
OBJECTIVE: To systematically review quantitative and qualitative studies exploring physician-adult patient-adult companion (triadic) communication and/or decision-making within all medical encounters. METHODS: Studies were identified via database searches and reference lists. One author assessed eligibility of studies, verified by two co-authors. Data were extracted by one author and cross-checked for accuracy. Two authors assessed the quality of included articles using standardized criteria. RESULTS: Of the 8409 titles identified, 52 studies were included. Summary statements and tables were developed for each of five identified themes. Results indicated companions regularly attended consultations, were frequently perceived as helpful, and assumed a variety of roles. However, their involvement often raised challenges. Patients with increased need were more often accompanied. Some companion behaviours were felt to be more helpful (e.g. informational support) and less helpful (e.g. dominating/demanding behaviours), and preferences for involvement varied widely. CONCLUSION: Triadic communication in medical encounters can be helpful but challenging. Based on analysis of included studies, preliminary strategies for health professionals are proposed. PRACTICE IMPLICATIONS: Preliminary strategies for health professionals include (i) encourage/involve companions, (ii) highlight helpful companion behaviours, (iii) clarify and agree upon role preferences of patient/companions. Future studies should develop and evaluate specific strategies for optimizing triadic consultations.
Subject(s)
Communication , Decision Making , Physician-Patient Relations , Professional-Family Relations , Referral and Consultation , Adult , Evidence-Based Practice , Humans , Patient-Centered Care/methods , Patient-Centered Care/standards , RoleABSTRACT
BACKGROUND: The purpose was to investigate patient-doctor agreement on clinical trial discussion cross-culturally. METHODS: In the International Breast Cancer Study Group Trial 33-03 on shared decision-making for early breast cancer in Australian/New Zealand (ANZ) and Swiss/German/Austrian (SGA) centers, doctor and patient characteristics plus doctor stress and burnout were assessed. Within 2 weeks post-consultation about treatment options, the doctor and patient reported independently, whether a trial was discussed. Odds ratios of agreement for covariables were estimated by generalized estimating equations for each language cohort, with doctor as a random effect. RESULTS: In ANZ, 21 doctors and 339 patients were eligible; in SGA, 41 doctors and 427 patients. In cases where the doctor indicated 'no trial discussed', 82% of both ANZ and SGA patients agreed; if the doctor indicated 'trial discussed', 50% of ANZ and 38% of SGA patients agreed, respectively. Factors associated with higher agreement were: low tumor grade and fewer patients recruited into clinical trials in SGA; public institution, patient born in ANZ (versus other), higher doctor depersonalization and personal accomplishment in ANZ. CONCLUSION: There is discordance between oncologists and their patients regarding clinical trial discussion, particularly when the doctor indicates that a trial was discussed. Factors contributing to this agreement vary by culture.
Subject(s)
Breast Neoplasms/therapy , Clinical Trials as Topic , Decision Making , Physician-Patient Relations , Communication , Comprehension , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Mental Recall , Stress, PsychologicalABSTRACT
BACKGROUND: Cancer patients want access to reliable information about currently recruiting clinical trials. PATIENTS AND METHODS: Oncologists and their patients were randomly assigned to access a consumer-friendly cancer clinical trials web site [Australian Cancer Trials (ACT), www.australiancancertrials.gov.au] or to usual care in a cluster randomized controlled trial. The primary outcome, measured from audio recordings of oncologist-patient consultations, was the proportion of patients with whom participation in any clinical trial was discussed. Analysis was by intention-to-treat accounting for clustering and stratification. RESULTS: Thirty medical oncologists and 493 patients were recruited. Overall, 46% of consultations in the intervention group compared with 34% in the control group contained a discussion about clinical trials (P=0.08). The mean consultation length in both groups was 29 min (P=0.69). The proportion consenting to a trial was 10% in both groups (P=0.65). Patients' knowledge about randomized trials was lower in the intervention than the control group (mean score 3.0 versus 3.3, P=0.03) but decisional conflict scores were similar (mean score 42 versus 43, P=0.83). CONCLUSIONS: Good communication between patients and physicians is essential. Within this context, a web site such as Australian Cancer Trials may be an important tool to encourage discussion about clinical trial participation.
Subject(s)
Clinical Trials as Topic , Neoplasms/drug therapy , Adult , Aged , Australia , Decision Making , Drug Information Services , Female , Health Knowledge, Attitudes, Practice , Humans , Information Dissemination , Male , Middle Aged , Patient Preference , Patient Selection , PhysiciansABSTRACT
PURPOSE: Health-related quality of life (HRQoL) and unmet needs (needs) questionnaires offer alternative perspectives for assessing cancer patients' concerns. We examined whether the conceptual differences underlying these alternative approaches yield corresponding empirical differences. METHODS: Eight-hundred and seventy-four women with ovarian cancer completed the Functional Assessment of Cancer Therapy scale (FACT-G; HRQoL) and the Supportive Care Needs Survey (SCNS-SF34; needs) every 3 months for 2 years. Correlational analysis, exploratory and confirmatory factor analysis (EFA/CFA), and Rasch analysis tested the relationship between patients' responses to similar domains and similar items across the two questionnaires. RESULTS: Strong correlations were found between items with virtually identical wording (0.67-0.75), while moderate to strong correlations (0.55-0.65) were found for those with very similar wording. EFA identified two common domains across the two questionnaires: physical and psychological. For each common domain, CFA indicated models involving a single construct with systematic variation within each questionnaire fit best. Rasch analysis including very similar items within the physical and psychological domains (separately) demonstrated strong evidence of unidimensionality. CONCLUSIONS: The high degree of similarity between patient responses to items addressing the same or very similar concerns suggests either that HRQoL and needs approaches do not reflect different constructs or that patients may not be able to differentiate between the severity of a concern and the level of need associated with that concern, especially when these are assessed in quick succession.
Subject(s)
Health Services Needs and Demand , Ovarian Neoplasms/psychology , Psychometrics/standards , Quality of Life/psychology , Women's Health , Chi-Square Distribution , Factor Analysis, Statistical , Female , Health Surveys , Humans , Middle Aged , Reproducibility of Results , Statistics as TopicABSTRACT
BACKGROUND: This review aims to assist cancer clinical researchers in choosing between the two most widely used measures of cancer-specific health-related quality of life: the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 and Functional Assessment of Cancer Therapy-General (FACT-G). MATERIALS AND METHODS: Information on QLQ-C30 and FACT-G content, scale structure, accessibility and availability was collated from websites and manuals. A systematic review was undertaken to identify all articles reporting on psychometric properties and information to assist interpretability. Evidence for reliability, validity and responsiveness was rated using a standardised checklist. Instrument properties were compared and contrasted to inform recommendations. RESULTS: Psychometric evidence does not recommend one questionnaire over the other in general. However, there are important differences between the scale structure, social domains and tone that inform choice for any particular study. CONCLUSIONS: Where research objectives are concerned with the impact of a specific tumour type, treatment or symptom, choice should be guided by the availability, content, scale structure and psychometric properties of relevant European Organisation for the Research and Treatment of Cancer versus Functional Assessment of Chronic Illness Therapy modules. Because the FACT-G combines symptoms and concerns within each scale, individual items should always be reviewed within the context of specific research objectives. Where these issues are indecisive, researchers are encouraged to use an algorithm at the end of the current article.
Subject(s)
Neoplasms , Outcome Assessment, Health Care/methods , Quality of Life , Surveys and Questionnaires , Humans , Sickness Impact ProfileABSTRACT
AIM: There are limited data concerning the unmet needs experienced by patients with colorectal cancer. The aim of this study was to identify unmet supportive care needs of people with colorectal cancer following discharge from hospital. METHOD: Health service utilization was used as a measure of expressed unmet need. A retrospective case note review was conducted of 521 patients surgically treated for colorectal cancer at Royal Prince Alfred Hospital, Sydney, between 1 January 2004 and 31 December 2007. Case notes maintained by a cancer nurse specialist were reviewed to identify postdischarge occasions-of-service where unmet need was expressed. Logistic regression was conducted to investigate predictors of unmet need. RESULTS: Of 521 patients, 219 (42%) patients had unmet supportive care needs, of which 50% of all needs was found in the physical domain. Twenty-six per cent of unmet needs was expressed within the first week following discharge from hospital after cancer surgery; however, 21% persisted after 6 months. Multivariate analysis indentified that in this cohort, younger age predicted the expression of an unmet need (AOR, 0.97; 95% CI, 0.96-0.99). People with rectal cancer remained significantly more likely to require more than one contact with the nurse to satisfy a need (AOR, 2.80; 95% CI, 1.60-5.01) and to report a physical need (AOR, 3.56; 95% CI, 2.03-6.27). CONCLUSION: This study has shown that auditing the interactions of a cancer nurse with patients can provide information about unmet supportive care needs, which can be used to develop relevant supportive care services or interventions for people with colorectal cancer.
Subject(s)
Aftercare/standards , Colorectal Neoplasms/nursing , Home Care Services/standards , Nursing Audit , Rectal Neoplasms/nursing , Age Factors , Aged , Australia , Colorectal Neoplasms/surgery , Dyspnea/therapy , Episode of Care , Female , Humans , Logistic Models , Male , Middle Aged , Multivariate Analysis , Nausea/therapy , Pain Management/standards , Patient Education as Topic/standards , Rectal Neoplasms/surgery , Retrospective Studies , Time FactorsABSTRACT
Although it is widely recognised that better coordination of cancer care holds considerable potential to improve patients' experience of care and their outcomes, there is no agreed definition of the term 'care coordination' or consensus as to what it entails. An explorative descriptive qualitative study was undertaken to explore the views and experiences of key stakeholders to identify the key components of cancer care coordination. We conducted semi-structured individual and focus groups interviews with patients (n= 20) who have been treated for any cancer and carers (n= 4) as well as clinicians (n= 29) involved in cancer care, using open-ended questions. Data were collected until saturation of concepts was reached. A phenomenological approach based on grounded theory was used to explore the participants' experiences and views. Seven key components were identified: organisation of patient care, access to and navigation through the healthcare system, the allocation of a 'key contact' person, effective communication and cooperation among the multidisciplinary team and other health service providers, delivery of services in a complementary and timely manner, sufficient and timely information to the patient and needs assessment. The components of cancer care coordination identified provide an empirical basis for the development of metrics and interventions to improve this aspect of cancer care.
Subject(s)
Cancer Care Facilities/organization & administration , Neoplasms/therapy , Patient Care Management/organization & administration , Adult , Aged , Australia , Delivery of Health Care, Integrated/organization & administration , Female , Focus Groups , Health Services Accessibility , Humans , Interdisciplinary Communication , Male , Middle Aged , Patient Satisfaction , Qualitative Research , Surveys and QuestionnairesABSTRACT
BACKGROUND: This study examined the prevalence and correlates of skin cancer screening behaviours among individuals at high risk of developing melanoma due to strong family history. METHODS: A total of 120 individuals with a known family-specific CDKN2A mutation (72% response rate) completed a self-report questionnaire assessing annual frequency of skin self-examination (SSE), clinical skin examination (CSE) and a variety of potential demographic, clinical and psychosocial correlates. RESULTS: In the past 12 months, 50% of participants reported engaging in SSE at least four times, and 43% of participants had undergone at least one CSE. Engagement in SSE was associated with doctor recommendation (ß=1.77, P=0.001), confidence in one's ability to perform SSE (ß=1.44, P<0.0001), positive beliefs about melanoma treatment (ß=0.77, P=0.002) and intention to perform SSE in the future (ß=1.69, P<0.0001). These variables accounted for 59% of the variance in SSE behaviour. Further, information-seeking style moderated the relationship between anxiety and SSE (ß=1.02, P=0.004). Annual uptake of CSE was associated with doctor recommendation (ß=2.21, P<0.0001) and intention to undergo CSE in the future (ß=1.19, P=0.001). CONCLUSION: In comparison with clinical guidelines, it appears that individuals at high risk of developing melanoma engage in suboptimal levels of skin surveillance. Improved doctor-patient communication, as well as psycho-education and behavioural support, may be viable means of improving early skin cancer detection behaviours in this high-risk population.
Subject(s)
Cyclin-Dependent Kinase Inhibitor p16/genetics , Melanoma/genetics , Skin Neoplasms/diagnosis , Skin Neoplasms/psychology , Attitude to Health , Educational Status , Family , Female , Humans , Learning , Male , Marital Status , Medical History Taking , Melanoma/epidemiology , Mutation , Perception , Prevalence , Self-Examination , Skin , Skin Neoplasms/epidemiology , Skin Neoplasms/geneticsABSTRACT
OBJECTIVES: Recent reviews suggest that the routine use of patient-reported outcome measures (PROMs) in cancer clinics improves the processes of care but not patient outcomes such as quality of life or satisfaction. We set out to identify future strategies for (1) interventions to impact patient outcomes and (2) trials to identify treatment effects. METHODS: MEDLINE and PsycINFO were systematically searched to identify reports of relevant randomized controlled trials. Intervention and trial designs were compared and contrasted along the parameters identified by previous reviews and the rationales reported in each article. Results were cross-referenced with evidence for impact to develop recommendations. RESULTS: Six articles were identified. Evidence for impact on patient outcomes was limited. Interventions varied according to the PROMs used, the frequency, content and presentation of feedback, and the training offered to medical teams. Trials varied in their unit of randomization, outcome measures, control of contamination, monitoring of PROM use, and length of follow-up. Our analysis identified the need for future interventions to ensure that PROM data are used to optimum effect and for trials to control for contamination and monitor use of PROMs to link this with outcomes. CONCLUSIONS: Future interventions should motivate and equip health professionals to use PROM data in managing patients, train patients in self-efficacy, use more specific PROMs in clinic, improve the interpretability of feedback for both medical staff and patients, and monitor the use of PROMs to intervene when problems arise. Future trials should use a cluster-randomized design to control for contamination and enable systems-based interventions.
Subject(s)
Neoplasms/therapy , Outcome and Process Assessment, Health Care , Patient Satisfaction , Health Status , Humans , Medical Oncology/education , Medical Oncology/methods , Neoplasms/psychology , Outcome and Process Assessment, Health Care/standards , Patient Education as Topic , Quality of Life , Treatment OutcomeABSTRACT
BACKGROUND: Few data exist regarding the use of complementary and alternative medicine (CAM) by unaffected women at high risk of breast cancer. METHODS: Self-reported CAM use by women from multiple-case breast cancer families was obtained by questionnaire. Factors associated with CAM use were assessed using multiple logistic regression. RESULTS: Of 892 women, 55% (n=489) used CAM, 6% (n=53) specifically to prevent cancer. CAM use was independently associated with tertiary education level (OR 2.56, 95% CI 1.83-3.58, p<0.001), greater physical activity (OR 1.05 per hour of physical activity/week, 95% CI 1.00-1.10, p=0.049), greater anxiety (OR 1.92, 95% CI 1.16-3.16, p=0.01), not currently smoking (OR 0.64, 95% CI 0.42-0.97, p=0.037) and lower perceived BC risk (OR 0.82 per 20 percentage points, 95% CI 0.72-0.94, p=0.005). CONCLUSIONS: The majority of high-risk women use CAM, but mostly for reasons other than cancer prevention. Most predictors of CAM use are consistent with the limited literature for women at high risk for cancer.