Understanding patient choices regarding breast reconstruction after mastectomy for breast cancer.

PURPOSE: In Australia, about 40% of patients undergo mastectomy to treat breast cancer, with negative impacts on body image, sexual function and quality of life. Whilst breast reconstruction is associated with increased patient self-esteem and a greater sense of wholeness and well-being, the national reconstruction rate is low at 18%. This study aimed to compare demographics, treatment factors and information provision about breast reconstruction in women who had and did not have breast reconstruction following mastectomy treatment and identify goals and concerns underpinning women's reconstruction decisions. METHODS: Female patients who had a mastectomy to treat breast cancer between 2010 and 2014 in a culturally and linguistically diverse (CALD) and socially disadvantaged region participated in a cross-sectional study, completing a questionnaire in their language of choice (English, Vietnamese, Chinese or Arabic). RESULTS: Completed surveys were returned by 168 women (42% response rate; 77% English-speaking), of whom only 19.0% (n = 32) reported having had breast reconstruction. Reconstruction rates were significantly lower in women who reported speaking a language other than English at home versus only English (37.5% vs 62.5%, p = 0.03). However, all women expressed a desire for more information about breast reconstruction and more support to make their decision about breast reconstruction. CONCLUSIONS: Patients identified a need for greater information provision on breast reconstruction, highlighting an urgent need for resources specifically about breast reconstruction, particularly for non-English-speaking patients. Greater provision of information prior to mastectomy is critical to underpin breast cancer patients' decisions about breast reconstruction, especially for non-English speaking patients.

Perspectives of oncology nurses and oncologists regarding barriers to working with patients from a minority background: Systemic issues and working with interpreters.

This study aimed to ascertain the systemic barriers encountered by oncology health professionals (HPs) working with patients from ethnic minorities to guide the development of a communication skills training programme. Twelve medical and five radiation oncologists and 21 oncology nurses were invited to participate in this qualitative study. Participants were interviewed individually or in a focus group about their experiences working with people from minority backgrounds. All interviews were transcribed verbatim and analysed thematically. HPs encountered language and communication barriers in their interactions with patients and their families, which were perceived to impact negatively on the quality and amount of information and support provided. There was a shortage of, and poor processes for engaging, interpreters and some HPs were concerned about the accuracy of interpretation. HPs expressed a need for training in cultural awareness and communication skills with a preference for face-to-face delivery. A lack of funding, a culture of "learning on the job", and time constraints were systemic barriers to training. Oncologists and oncology nurses encounter complex challenges in clinical interactions with minority patients and their families, including difficulties working with interpreters. Formal training programmes targeted to the development of culturally competent communication skills are required.

Routine screening of Indigenous cancer patients' unmet support needs: a qualitative study of patient and clinician attitudes.

BACKGROUND: Indigenous Australians have poorer cancer outcomes in terms of incidence mortality and survival compared with non-Indigenous Australians. The factors contributing to this disparity are complex. Identifying and addressing the psychosocial factors and support needs of Indigenous cancer patients may help reduce this disparity. The Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) is a validated 26-item questionnaire developed to assess their unmet supportive care needs. This qualitative study reports on patient and clinician attitudes towards feasibility and acceptability of SCNAT-IP in routine care. METHODS: Forty-four in-depth semi-structured interviews were conducted with 10 clinical staff and 34 Indigenous cancer patients with heterogeneous tumours. Participants were recruited from four geographically diverse Australian cancer clinics. Transcripts were imported into qualitative analysis software (NVivo 10 Software), coded and thematic analysis performed. RESULTS: Indigenous patients (mean age 54.4 years) found the SCNAT-IP beneficial and easy to understand and they felt valued and heard. Clinical staff reported multiple benefits of using the SCNAT-IP. They particularly appreciated its comprehensive and systematic nature as well as the associated opportunities for early intervention. Some staff described improvements in team communication, while both staff and patients reported that new referrals to support services were directly triggered by completion of the SCNAT-IP. There were also inter-cultural benefits, with a positive and bi-directional exchange of information and cultural knowledge reported when using the SCNAT-IP. Although staff identified some potential barriers to using the SCNAT-IP, including the time required, the response format and comprehension difficulties amongst some participants with low English fluency, these were outweighed by the benefits. Some areas for scaled improvement were also identified by staff. CONCLUSIONS: Staff and patients found the SCNAT-IP to be an acceptable tool and supported universal screening for Indigenous cancer patients. The SCNAT-IP has the potential to help reduce the inequalities in cancer care experienced by Indigenous Australians by identifying and subsequently addressing their unmet support needs. Further research is needed to explore the validity of the SCNAT-IP for Indigenous people from other nations.

Indigenous cancer patient and staff attitudes towards unmet needs screening using the SCNAT-IP.

INTRODUCTION: Indigenous Australians have a higher cancer incidence, worse mortality and are less likely to receive optimal cancer treatment compared with non-Indigenous Australians. Culturally appropriate supportive care helps ensure that Indigenous patients engage in and receive optimal care. However, many existing supportive care needs tools lack cultural relevance for Indigenous people, and their feasibility with Indigenous people has not been demonstrated. The Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) assesses the unmet supportive care needs of Indigenous cancer patients. PURPOSE: This descriptive study evaluates the clinical implementation of the SCNAT-IP in routine care. METHODS: Two large tertiary cancer treatment centres and two regional oncology clinics participated. Participants included 10 clinical staff and 36 adult Indigenous cancer patients (mean age 54 years). Patients and clinicians completed brief, purpose-designed questionnaires and interviews. RESULTS: Patients reported high ratings (means >8/10) for acceptability, helpfulness and timing items. The majority (≥80%) of staff agreed that the SCNAT-IP was useful to clinical practice, should be used in routine care and was acceptable to their patients. CONCLUSIONS: The study provides empirical support for the feasibility and acceptability of the SCNAT-IP in routine cancer care with Indigenous Australians. Routine screening with the SCNAT-IP has the potential to improve cancer care for Indigenous people with cancer.

Impact of a nutrition and physical activity intervention (ENRICH: Exercise and Nutrition Routine Improving Cancer Health) on health behaviors of cancer survivors and carers: a pragmatic randomized controlled trial.

BACKGROUND: Physical activity and consuming a healthy diet have clear benefits to the physical and psychosocial health of cancer survivors, with guidelines recognising the importance of these behaviors for cancer survivors. Interventions to promote physical activity and improve dietary behaviors among cancer survivors and carers are needed. The aim of this study was to determine the effects of a group-based, face-to-face multiple health behavior change intervention on behavioral outcomes among cancer survivors of mixed diagnoses and carers. METHODS: The Exercise and Nutrition Routine Improving Cancer Health (ENRICH) intervention was evaluated using a two-group pragmatic randomized controlled trial. Cancer survivors and carers (n = 174) were randomly allocated to the face-to-face, group-based intervention (six, theory-based two-hour sessions delivered over 8 weeks targeting healthy eating and physical activity [PA]) or wait-list control (after completion of 20-week data collection). Assessment of the primary outcome (pedometer-assessed mean daily step counts) and secondary outcomes (diet and alcohol intake [Food Frequency Questionnaire], self-reported PA, weight, body mass index, and waist circumference) were assessed at baseline, 8-and 20-weeks. RESULTS: There was a significant difference between the change over time in the intervention group and the control group. At 20 weeks, the intervention group had increased by 478 steps, and the control group had decreased by 1282 steps; this represented an adjusted mean difference of 1761 steps (184 to 3337; P = 0.0028). Significant intervention effects for secondary outcomes, included a half serving increase in vegetable intake (difference 39 g/day; 95 % CI: 12 to 67; P = 0.02), weight loss (kg) (difference -1.5 kg; 95 % CI, -2.6 to -0.3; P = 0.014) and change in body mass index (kg/m(2)) (difference -0.55 kg/m(2); 95 % CI, -0.97 to -0.13; P = 0.012). No significant intervention effects were found for self-reported PA, total sitting time, waist circumference, fruit, energy, fibre, alcohol, meat, or fat consumption. CONCLUSIONS: The ENRICH intervention was effective for improving PA, weight, body mass index, and vegetable consumption even with the inclusion of multiple cancer types and carers. As an example of successful research translation, the Cancer Council NSW has subsequently adopted ENRICH as a state-wide program. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Register identifier: ANZCTRN1260901086257.

Psychometric evaluation of the German Version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C-G) of cancer patients.

This study aimed for psychometric validation of the German version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C-G). In- and outpatients with lung, urological and gastrointestinal cancer at Heidelberg University Hospital in Germany and in each case one relevant caregiver were asked to complete a set of questionnaires assessing their unmet needs together with distress, depression, anxiety and caregiver strain. In addition, medical data of the patients were collected. Fully completed questionnaires were received from 188 pairs of patients and their caregivers. Using exploratory factor analysis, four domains of unmet needs were identified with an appropriate variance explanation (58.7%) and acceptable (>0.70) internal consistencies (α = 0.95 to 0.76) for each domain. Convergent validity was found with respect to significant positive correlations (>0.40) of the SCNS-P&C-G domains with caregivers' anxiety, depression and strain. Although poorer health status of the patient indicated more unmet caregiver needs, this finding was not consistent for all need domains. Overall, associations were only moderate to weak pointing out the necessity of a separate screening for caregivers' needs. The findings of this study support that the SCNS-P&C-G is an appropriate research instrument to assess caregivers' needs on different domains throughout the disease trajectory.

Immigrants' perceptions of the quality of their cancer care: an Australian comparative study, identifying potentially modifiable factors.

BACKGROUND: Recent data show a falling cancer mortality in the general population without a similar shift in immigrant outcomes, leading to a greater cancer burden and mortality for immigrants. Our aims were to compare perceived patterns of care in immigrants and native-born cancer patients. PATIENTS AND METHODS: This was a hospital-based sample of first-generation immigrants and Australian-born Anglo patients in the first year following diagnosis. It was restricted to Chinese, Arabic, or Greek speakers. Eligible participants, recruited via 16 oncology clinics, were over 18, with cancer (any type or stage), and having commenced treatment at least 1 month previously. Five hundred and seventy-one CALD patients (comprising 145 Arabic, 248 Chinese, and 178 Greek) and a control group of 274 Anglo-Australian patients participated. RESULTS: Immigrants had difficulty communicating with the doctor (73% versus 29%) and understanding the health system (38% versus 10%). Differences were found in 'difficulty knowing who to see' (P = 0.0002), 'length of time to confirm diagnosis' (P = 0.04), wanting more choice about a specialist and hospital (P < 0.0001); being offered the opportunity to see a counselor (P < 0.0001); and actually seeing one (P < 0.0001). There were no significant self-reported differences regarding how cancer was detected, time to see a health professional, or type first seen; however, immigrants reported difficulty knowing who to see. Previous studies showed differences in patterns of care according to socioeconomic status (SES) and educational level. Despite adjusting for age, sex, education, marital status, SES, time since diagnosis, and type of cancer, we did not find significant differences. Instead, we found that understanding of the health system and confidence understanding English were important factors. CONCLUSIONS: This study confirmed that immigrants with cancer perceive an inferior quality of cancer care. We highlight potentially modifiable factors including assistance in navigating the health system, translated information, and cultural competency training for health professionals.

miR-192, miR-194 and miR-215: a convergent microRNA network suppressing tumor progression in renal cell carcinoma.

MicroRNAs (miRNAs) play a crucial role in tumor progression and metastasis. We, and others, recently identified a number of miRNAs that are dysregulated in metastatic renal cell carcinoma compared with primary renal cell carcinoma. Here, we investigated three miRNAs that are significantly downregulated in metastatic tumors: miR-192, miR-194 and miR-215. Gain-of-function analyses showed that restoration of their expression decreases cell migration and invasion in renal cell carcinoma cell line models, whereas knockdown of these miRNAs resulted in enhancing cellular migration and invasion abilities. We identified three targets of these miRNAs with potential role in tumor aggressiveness: murine double minute 2, thymidylate synthase, and Smad Interacting protein 1/zinc finger E-box binding homeobox 2. We observed a convergent effect (the same molecule can be targeted by all three miRNAs) and a divergent effect (the same miRNA can control multiple targets) for these miRNAs. We experimentally validated these miRNA-target interactions using three independent approaches. First, we observed that miRNA overexpression significantly reduces the mRNA and protein levels of their targets. In the second, we observed significant reduction of the luciferase signal of a vector containing the 3'UTR of the target upon miRNA overexpression. Finally, we show the presence of inverse correlation between miRNA changes and the expression levels of their targets in patient specimens. We also examined the prognostic significance of miR-215 in renal cell carcinoma. Lower expression of miR-215 is associated with significantly reduced disease-free survival time. These findings were validated on an independent data set from The Cancer Genome Atlas. These results can pave the way to the clinical use of miRNAs as prognostic markers and therapeutic targets.

Unmet needs in immigrant cancer survivors: a cross-sectional population-based study.

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.

Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines.

Cancer information services are a highly accessible source of support for people affected by cancer. To date the nature and extent of distress experienced by such callers and their unmet support needs have not been well described. A cross-sectional survey of 354 cancer patients and 336 carers who reported elevated distress on contact with a cancer information service assessed socio-demographic variables; anxiety, depression and somatization; unmet supportive care needs; cancer-specific distress; presenting problems; post-traumatic growth. Adjustment to cancer was most commonly reported; followed by anxiety. In all, 53.4% of patients and 45.2% of carers reached caseness in anxiety, depression or somatization. Carers had higher distress ratings and intrusive thinking compared to patients; whereas patients had higher somatization. For patients, most unmet supportive care needs were psychological; for carers unmet needs were related to health care services and information related to the person diagnosed with cancer. Being single, unemployed, in treatment, having higher initial distress scores, higher intrusion and avoidance predicted poorer outcomes. Information service frameworks should include distress screening and clear triage and referral processes for psychological care.

Priority recommendations for the implementation of patient-reported outcomes in clinical cancer care: a Delphi study.

PURPOSE: The aim of this study was to develop priority recommendations for the service level implementation of patient-reported outcomes (PROs) into clinical cancer care. METHODS: Development of draft guidance statements was informed by a literature review, the Knowledge to Action (KTA) implementation framework, and discussion with PRO experts and cancer survivors. A two-round modified Delphi survey with key stakeholders including cancer survivors, clinical and research experts, and Information Technology specialists was undertaken. Round 1 rated the importance of the statements and round 2 ranked statements in order of priority. RESULTS: Round 1 was completed by 70 participants with round 2 completed by 45 participants. Forty-seven statements were rated in round 2. In round 1, the highest agreement items (>90% agreement) included those that focused on the formation of strong stakeholder partnerships, ensuring ongoing communication within these partnerships, and the use of PROs for improvement and guidance in clinical care. Items ranked as the highest priorities in round 2 included assessment of current staff capabilities and service requirements, mapping of workflows and processes to enable collection, and using collected PROs to guide improved health outcomes. CONCLUSIONS: This stakeholder consultation process has identified key priorities in PRO implementation into clinical cancer care that include clinical relevance, stakeholder engagement, communication, and integration within the existing processes and capabilities. IMPLICATION FOR CANCER SURVIVORS: Routine adoption of PRO collection by clinical cancer services requires multiple implementation steps; of highest priority is strong engagement and communication with key stakeholders including cancer survivors.

Validation of the Chinese version of the short-form Supportive Care Needs Survey Questionnaire (SCNS-SF34-C).

BACKGROUND: There is no instrument available in Chinese for assessing psychosocial needs. This study aimed to assess the validity and reliability of the Chinese version of the Supportive Care Needs Survey short form (SCNS-SF34-C) in Chinese women with breast cancer (BC). METHODS: The Chinese version of the 34-item SCNS-SF34-C, a self-report measure for assessing psychosocial unmet needs, was administered to 348 Chinese women with BC at the outpatient oncology unit. Exploratory factor analysis (EFA) tested the factor structure. The internal consistency, convergent, divergent, and discriminant validity of the identified factor structure were assessed. RESULTS: In contrast to the five-factor structure identified in the original 34-item SCNS-SF34, our EFA produced a 33-item solution accounting for 54% of score variance comprising four-factors: (1) Health system, information, and patient support, (2) Psychological needs, (3) Physical and daily living, and (4) Sexuality needs. Separate dimensions for Health system and information, and the Patient care and support domains were not supported. Cronbach alphas ranged from 0.75 to 0.92. Correlations of psychological and physical symptom distress measures indicated acceptable convergent validity. No correlation with optimism and positive affect measures indicated divergent validity. Discriminant validity was demonstrated by effective differentiation between clinically distinct patient groups (no active treatment versus active treatment; advanced BC versus localized BC). DISCUSSION: The Chinese version of the Supportive Care Needs Survey has suitable factor structure and psychometric properties for use in assessing psychosocial needs among Chinese women with BC. Further validation is needed for other cancer types.

Three dysregulated miRNAs control kallikrein 10 expression and cell proliferation in ovarian cancer.

BACKGROUND: Kallikrein-related peptidases (KLKs) are a family of serine proteases that have been shown to be dysregulated in several malignancies including ovarian cancer. The control of kallikrein genes and their physiological function in cancer is not well understood. We hypothesized that microRNAs (miRNAs) represent a novel mechanism for post-transcriptional control of KLK expression in cancer. METHODS: We first analysed miRNA expression in ovarian cancer in silico. A total of 98 miRNAs were reported to have altered expression in ovarian cancer. Three of these miRNAs were predicted to target KLK10. We experimentally verified the predicted miR-KLK10 interaction using two independent techniques, a luciferase assay with a construct containing the KLK10 3' untranslated region (UTR), pMIR-KLK10, and measuring KLK10 protein levels after transfection with miRNA. RESULTS: When we co-transfected cells with pMIR-KLK10 and either let-7f, miR-224, or mR-516a, we saw decreased luciferase signal, suggesting that these miRNAs can target KLK10. We then examined the effect of these three miRNAs on KLK10 protein expression and cell growth. Transfection of all miRNAs, let-7f, miR-224, and miR-516a led to a decrease in protein expression and cellular growth. This effect was shown to be dose dependent. The KLK10 protein levels were partially restored by co-transfecting let-7f and its inhibitor. In addition, there was a slight decrease in KLK10 mRNA expression after transfection with let-7f. CONCLUSION: Our results confirm that KLKs can be targeted by more than one miRNA. Increased expression of certain miRNAs in ovarian cancer can lead to decreased KLK protein expression and subsequently have a negative effect on cell proliferation. This dose-dependent effect suggests that a 'tweaking' or 'fine-tuning' mechanism exists in which the expression of one KLK can be controlled by multiple miRNAs. These data together suggest that miRNA may be used as potential therapeutic options and further studies are required.

Psychological intervention (ConquerFear) for treating fear of cancer recurrence: mediators and moderators of treatment efficacy.

PURPOSE: ConquerFear is an efficacious intervention for fear of cancer recurrence (FCR) that demonstrated greater improvements than an attention control (relaxation training) in a randomized controlled trial. This study aimed to determine mediators and moderators of the relative treatment efficacy of ConquerFear versus relaxation. METHODS: One hundred and fifty-two cancer survivors completed 5 therapy sessions and outcome measures before and after intervention and at 6 months' follow-up. We examined theoretically relevant variables as potential mediators and moderators of treatment outcome. We hypothesized that metacognitions and intrusions would moderate and mediate the relationship between treatment group and FCR level at follow-up. RESULTS: Only total FCR score at baseline moderated treatment outcome. Participants with higher levels of FCR benefited more from ConquerFear relative to relaxation on the primary outcome. Changes in metacognitions and intrusive thoughts about cancer during treatment partially mediated the relationship between treatment group and FCR. CONCLUSIONS: These results show that ConquerFear is relatively more effective than relaxation for those with overall higher levels of FCR. The mediation analyses confirmed that the most likely mechanism of treatment efficacy was the reduction in unhelpful metacognitions and intrusive thoughts during treatment, consistent with the theoretical framework underpinning ConquerFear. IMPLICATIONS FOR CANCER SURVIVORS: ConquerFear is a brief, effective treatment for FCR in cancer survivors with early-stage disease. The treatment works by reducing intrusive thoughts about cancer and changing beliefs about worry and is particularly helpful for people with moderate to severe FCR.

Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals.

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals' needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.

Breaking bad news: consensus guidelines for medical practitioners.

PURPOSE AND DESIGN: One of the more difficult tasks that clinicians must perform as part of their care of patients is that of conveying bad news, such as a severe diagnosis or death. However, there is a paucity of empirically founded information that relates to the specific steps for breaking bad news. We report on a set of guidelines for breaking bad news that was developed using a consensus process and incorporates the views of medical oncologists, general practitioners, surgeons, nurse consultants, social workers, clergy, human rights representatives, cancer patients, hospital interns, and clinical directors of medical schools in Australia. RESULTS AND CONCLUSION: It is recommended that further research be undertaken in a number of areas. First, there is a need to assess patients' versus providers' perceptions of the importance of each of the steps in breaking bad news, in order to define criteria for minimal levels of competence in this area. Second, controlled trials are needed to assess the effectiveness of the guidelines in changing clinical practice, and to identify the most effective strategies for breaking bad news to patients.

Solaria compliance in an unregulated environment: the Australian experience.

This study aimed to explore compliance with international recommendations on solaria use in a unregulated setting. Simulated customers visited 176 solaria operating in Australia and two face-to-face visits and one telephone contact were made for each establishment. From the survey, establishments compliant with the recommendations ranged from: 1.1% refusing access to the customer with skin type I; 9.7% recommending to the customer with skin type I against solaria use and up to 87.5% assessing skin type and recommending eye protection. Few (15.9%) were compliant with more than 10 of the 13 recommendations. Establishment type and number of sunbeds were significantly associated with compliance. This study has shown that a much higher level of compliance with recommendations, particularly those excluding higher-risk groups, is required to reduce the harm associated with use of solaria. While new legislation may be useful, other harm minimisation strategies including mandatory staff training and taxation should be considered.

The accuracy of self-reported health behaviors and risk factors relating to cancer and cardiovascular disease in the general population: a critical review.

OBJECTIVE: To critically review the literature concerning the accuracy of self-reported health behaviors and risk factors relating to cancer and cardiovascular disease among the general population. METHOD: A literature search was conducted on three major health research databases: MEDLINE, HealthPLAN, and PsychLit. The bibliographies of located articles were also checked for additional relevant references. Studies meeting the following five inclusion criteria were included in the review: They were investigating the accuracy of self-report among the general population, as opposed to among clinical populations. They employed an adequate and appropriate gold standard. At least 70% of respondents consented to validation, where validation imposed minimal demands on the respondent; and 60% consent to validation was considered acceptable where validation imposed a greater burden. They had a sample size capable of estimating sensitivity and specificity rates with 95% confidence intervals of width +/-10%. The time lag between collection of the self-report and validation data for physical measures did not exceed one month. RESULTS: Twenty-four of 66 identified studies met all the inclusion criteria described above. In the vast majority, self-report data consistently underestimated the proportion of individuals considered "at-risk." Similarly, community prevalences of risk factors were considerably higher according to gold standard data sources than they were according to self-report data. CONCLUSIONS: This review casts serious doubts on the wisdom of relying exclusively on self-reported health information. It suggests that caution should be exercised both when trying to identify at-risk individuals and when estimating the prevalence of risk factors among the general population. The review also suggests a number of ways in which the accuracy of individuals' self-reported health information can be maximized.

Community action for health promotion: a review of methods and outcomes 1990-1995.

OBJECTIVE: Our objective was to explore the effectiveness of community action as a strategy for health promotion, through a critical review of five years of community action evaluation literature. METHODS: Community action was defined as a health promotion, program that involved the community in implementation and control of the process of the program. Criteria for scientific evaluation of programs were proposed for sampling and control procedures, reliability and validity of instruments, analysis techniques, and specification of details of the intervention. A critical review of the literature, located by an on-line and related reference search, was undertaken for community action aimed at reducing cancer and cardiovascular disease, between January 1990 and May 1995. RESULTS: None of seven community action studies (17 articles) that examined cancer risk factors fulfilled all the criteria for rigorous scientific evaluation. The most methodologically adequate cancer study, the COMMIT intervention, had only a moderate degree of success in reducing community smoking rates. Similarly, none of the six studies (25 articles) on cardiovascular disease fulfilled all the criteria. The results for the most methodologically adequate study, the Minnesota Heart Health Program, were disappointing, with strong secular trends preventing adequate assessment of the intervention effect. CONCLUSIONS: The finding that none of the reviewed studies met all evaluation criteria was due to several factors, including political considerations, feasibility, and the continued evolution of the science of evaluation in health promotion. Some important questions are posed for researchers by the failure of methodologically superior projects, such as COMMIT, to show major gains in reducing health risk behaviors.