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The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people's experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3-5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing.
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Purpose: In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13-24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care. Methods: We conducted a multicenter cohort study, recruiting 1114 TYA aged 13-24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Results: Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48-4.09) and 2.93 [1.27-4.59], respectively, p = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM -0.011 [95%CI -0.046 to 0.024] and SOME-TYA-PTC: -0.054 [-0.086 to -0.023]; p = 0.006). Conclusion: The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units.
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Medidas de Resultados Relatados pelo Paciente , Humanos , Adolescente , Masculino , Feminino , Adulto Jovem , Inglaterra , Adulto , Estudos de Coortes , Neoplasias/psicologia , Neoplasias/terapiaRESUMO
OBJECTIVE: Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated psychological distress and need appropriate detection and management of the psychosocial impact of their illness and treatment. This paper describes the multinational validation of the Distress Thermometer (DT) for AYAs recently diagnosed with cancer and the relationship between distress and patient concerns on the AYA-Needs Assessment (AYA-NA). METHODS: AYA patients (N = 288; 15-29 years, Mage = 21.5 years, SDage = 3.8) from Australia (n = 111), Canada (n = 67), the UK (n = 85) and the USA (n = 25) completed the DT, AYA-NA, Hospital Anxiety Depression Scale (HADS) and demographic measures within 3 months of diagnosis. Using the HADS as a criterion, receiver operating characteristics analysis was used to determine the optimal cut-off score and meet the acceptable level of 0.70 for sensitivity and specificity. Correlations between the DT and HADS scores, prevalence of distress and AYA-NA scores were reported. RESULTS: The DT correlated strongly with the HADS-Total, providing construct validity evidence (r = 0.65, p < 0.001). A score of 5 resulted in the best clinical screening cut-off on the DT (sensitivity = 82%, specificity = 75%, Youden Index = 0.57). Forty-two percent of AYAs scored at or above 5. 'Loss of meaning or purpose' was the AYA-NA item most likely to differentiate distressed AYAs. CONCLUSIONS: The DT is a valid distress screening instrument for AYAs with cancer. The AYA-POST (DT and AYA-NA) provides clinicians with a critical tool to assess the psychosocial well-being of this group, allowing for the provision of personalised support and care responsive to individuals' specific needs and concerns.
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Neoplasias , Psico-Oncologia , Adolescente , Adulto , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Pré-Escolar , Humanos , Programas de Rastreamento , Neoplasias/psicologia , Estresse Psicológico/psicologia , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: Survival gains in teenagers and young adults (TYA) are reported to be lower than children and adults for some cancers. Place of care is implicated, influencing access to specialist TYA professionals and research.Consequently, age-appropriate specialist cancer care is advocated for TYA although systematic investigation of associated outcomes is lacking. In England, age-appropriate care is delivered through 13 Principal Treatment Centres (TYA-PTC). BRIGHTLIGHT is the national evaluation of TYA cancer services to examine outcomes associated with differing places and levels of care. We aimed to examine the association between exposure to TYA-PTC care, survival and documentation of clinical processes of care. DESIGN: Prospective cohort study. SETTING: 109 National Health Service (NHS) hospitals across England. PARTICIPANTS: 1114 TYA, aged 13-24, newly diagnosed with cancer between 2012 and 2014. INTERVENTION: Participants were assigned a TYA-PTC category dependent on the proportion of care delivered in a TYA-PTC in the first year after diagnosis: all care in a TYA-PTC (ALL-TYA-PTC, n=270), no care in a TYA-PTC (NO-TYA-PTC, n=359), and some care in a TYA-PTC with additional care in a children's/adult unit (SOME-TYA-PTC, n=419). PRIMARY OUTCOME: Data were collected on documented processes indicative of age-appropriate care using clinical report forms, and survival through linkage to NHS databases. RESULTS: TYA receiving NO-TYA-PTC care were less likely to have documentation of molecular diagnosis, be reviewed by a children's or TYA multidisciplinary team, be assessed by supportive care services or have a fertility discussion. There was no significant difference in survival according to category of care. There was weak evidence that the association between care category and survival differed by age (p=0.08) with higher HRs for those over 19 receiving ALL or SOME-TYA-PTC compared with NO-TYA-PTC. CONCLUSION: TYA-PTC care was associated with better documentation of clinical processes associated with age-appropriate care but not improved survival.
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Neoplasias , Medicina Estatal , Adolescente , Adulto , Criança , Estudos de Coortes , Inglaterra/epidemiologia , Humanos , Neoplasias/terapia , Estudos Prospectivos , Adulto JovemRESUMO
OBJECTIVES: In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children's cancer services. We present the first prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTC DESIGN: Longitudinal cohort study. SETTING: Hospitals delivering inpatient cancer care in England. PARTICIPANTS: 1114 young people aged 13 to 24 years newly diagnosed with cancer. INTERVENTION: Exposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. PRIMARY OUTCOME: Quality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis. RESULTS: Group mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups. CONCLUSIONS: Receipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study.
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Neoplasias , Qualidade de Vida , Adolescente , Adulto , Criança , Inglaterra , Humanos , Estudos Longitudinais , Neoplasias/terapia , Estudos Prospectivos , Adulto JovemRESUMO
OBJECTIVE: International recognition of the unique needs of young people with cancer is growing. Many countries have developed specialist age-appropriate cancer services believing them to be of value. In England, 13 specialist principal treatment centres (PTCs) deliver cancer care to young people. Despite this expansion of specialist care, systematic investigation of associated outcomes and costs has, to date, been lacking. The aim of this paper is to describe recruitment and baseline characteristics of the BRIGHTLIGHT cohort and the development of the bespoke measures of levels of care and disease severity, which will inform the evaluation of cancer services in England. DESIGN: Prospective, longitudinal, observational study. SETTING: Ninety-seven National Health Service hospitals in England. PARTICIPANTS: A total of 1114 participants were recruited and diagnosed between July 2012 and December 2014: 55% (n=618) were men, mean age was 20.1 years (SD=3.3), most (86%) were white and most common diagnoses were lymphoma (31%), germ cell tumour (19%) and leukaemia (13%). RESULTS: At diagnosis, median quality of life score was significantly lower than a published control threshold (69.7 points); 40% had borderline to severe anxiety, and 21% had borderline to severe depression. There was minimal variation in other patient-reported outcomes according to age, diagnosis or severity of illness. Survival was lower in the cohort than for young people diagnosed during the same period who were not recruited (cumulative survival probability 4 years after diagnosis: 88% vs 92%). CONCLUSIONS: Data collection was completed in March 2018. Longitudinal comparisons will determine outcomes and costs associated with access/exposure to PTCs. Findings will inform international intervention and policy initiatives to improve outcomes for young people with cancer.
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Pesquisa Biomédica/organização & administração , Atenção à Saúde/organização & administração , Neoplasias/terapia , Adolescente , Adulto , Transtornos de Ansiedade/etiologia , Transtorno Depressivo/etiologia , Humanos , Masculino , Neoplasias/psicologia , Seleção de Pacientes , Estudos Prospectivos , Qualidade de Vida , Medicina Estatal , Análise de Sobrevida , Adulto JovemRESUMO
BACKGROUND: The ICON6 trial showed that cediranib, an oral inhibitor of vascular endothelial growth factor receptors 1, 2, and 3, improved clinical outcomes for patients with platinum-sensitive relapsed ovarian cancer when it was used with chemotherapy and was continued as maintenance therapy. This study describes health-related quality of life (QOL) during the first year of treatment. METHODS: Four hundred fifty-six women were randomly allocated to receive standard chemotherapy only, chemotherapy with concurrent cediranib, or chemotherapy with cediranib administered concurrently and continued as maintenance. Patients completed QOL questionnaires until disease progression every 3 weeks during chemotherapy and then every 6 weeks to 1 year. Patients alive with disease progression completed a QOL form 1 year after randomization. The primary QOL endpoint was the global score from the Quality of Life Questionnaire Core 30 (of the European Organization for Research and Treatment of Cancer) at 1 year, with the standard chemotherapy group compared with the concurrent-maintenance cediranib group. RESULTS: The rate of questionnaire compliance was 90% at the baseline and 76% at 1 year and was similar across the 3 groups. The mean global QOL score at 1 year was 62.6 points for the standard chemotherapy group and 68.7 points for the concurrent-maintenance group (+4.5; 95% confidence interval, -2.0 to 11.0; P = .18). Sensitivity analyses suggested that this finding was robust to the effect of missing data, and the improvement became statistically significant after adjustments for self-reported diarrhea. CONCLUSIONS: The 6th study by the International Collaboration in Ovarian Neoplasm (ICON6) showed a significant improvement in progression-free survival with cediranib as concurrent and maintenance therapy. No QOL detriment with cediranib was found 1 year after treatment was commenced. The maintenance of QOL along with prolonged cancer control suggests that cediranib has a valuable role in the treatment of relapsed ovarian cancer. Cancer 2017;123:2752-61. © 2017 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
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Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Recidiva Local de Neoplasia/tratamento farmacológico , Neoplasias Epiteliais e Glandulares/tratamento farmacológico , Neoplasias Ovarianas/tratamento farmacológico , Inibidores de Proteínas Quinases/uso terapêutico , Qualidade de Vida , Quinazolinas/uso terapêutico , Carboplatina/administração & dosagem , Carcinoma Epitelial do Ovário , Método Duplo-Cego , Feminino , Humanos , Quimioterapia de Manutenção , Paclitaxel/administração & dosagem , Indução de RemissãoRESUMO
The aims of this article are to describe the ongoing development of adolescent and young adult (AYA) cancer services within the European Union (EU), and to develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling technique was used to promote distribution. Consensus was sought over three rounds from October 2012 to April 2015. Consensus was defined as >80% agreement ("agree" or "strongly agree"). Sixty professionals participated in round 1, 106 in round 2, and 61 in round 3. Twenty-six countries were represented across all rounds. Consensus was achieved for: the need for national policy guidance, the importance of patient choice, the validity of the International Charter of Rights for Young People, and some aspects of multi-disciplinary working. There was 75% agreement on a single definition of the patient age range within AYA cancer care. European professionals with expertise in AYA cancer care reached consensus on key elements of care for this group. The optimal AYA age range remained an elusive topic on which to agree. The broad engagement and interest in AYA cancer across the EU through the European Network for Cancer in Children and Adolescents (ENCCA) network was also demonstrated.
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Neoplasias/diagnóstico , Adolescente , Adulto , Técnica Delphi , Europa (Continente) , Feminino , Humanos , Masculino , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: To gather the perspectives of Teenagers and Young Adults (TYA) with cancer across Europe on the care they received and research priorities for TYA services. METHODS: A questionnaire was designed by TYA oncology specialists in the United Kingdom and translated into 11 other European languages. It was disseminated to TYAs in various European countries with the help of collaborators in the European Network for Cancer in Children and Adolescents (ENCCA). Free text responses were analyzed using a thematic approach. RESULTS: 301 participants representing 25 countries were entered into the analysis. Only 9% of the sample had experience of a ward solely for the use of TYAs. Two thirds of participants agreed with the need for TYA-specific services. Participants reported that important aspects of TYA care included access to psychological care, youth workers and physiotherapists, higher levels of staffing, and healthcare workers who understand the needs of TYAs and communicate effectively. The most frequently endorsed areas for future research were "monitoring after treatment," "communication between professionals and young people," "research about cancer," "fertility preservation," and "back to work/school." CONCLUSION: European collaboration between TYA and professionals in delivering this project has been feasible. This study contributes to developing a healthcare culture that values the perspectives of service users. It has provided an insight into what TYAs perceive as important aspects of their care, how they think TYA care can be improved, and what they consider to be important areas for research.
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Neoplasias/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Europa (Continente) , Feminino , Humanos , Masculino , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: Survival of children and adolescents and young adults (AYAs) treated for cancer has increased with improved treatments. However, there is still an increased risk of second primary cancer (SPC) in the long term compared with the same-age population, especially related to treatments. The follow-up of this population and the prevention of SPC are important issues. Therefore, this study aimed to review the available literature on cancer risk factors (lifestyle and occupational exposures) in children and AYAs previously treated for cancer in order to identify interventions that might be implemented to improve healthy behaviors in this population. METHODS: PubMed was searched using the following terms: "cancer[Tiab] AND young adult[Tiab] or teen[Tiab] or childhood[Tiab] AND prevention[Tiab] AND survivors[Meshterm]." RESULTS: Twenty-seven articles were included. Children and AYA survivors of cancer have similar risk behaviors to their peers regarding tobacco, diet, and sun exposure. However, they have lower physical activity. Few studies on prevention strategies in this population were identified. Results of available studies remain inconclusive. No publications were found on occupational exposure and risk of second cancer. CONCLUSION: Children and AYAs treated for cancer are a population at risk and require specific effective prevention strategies.
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Sobreviventes de Câncer , Comportamentos Relacionados com a Saúde/fisiologia , Segunda Neoplasia Primária/prevenção & controle , Adulto , Feminino , Humanos , Masculino , Fatores de Risco , Adulto JovemRESUMO
Purpose: Little is known about the factors that influence the place of inpatient care for teenage and young adult (TYA) cancer patients. Recent guidelines have recommended centralization of care for this group to a small number of specialized centers. This study aimed to investigate the influence of geography and travel times on the likelihood of admission to an age-specialist center in England during cancer treatment for patients aged 15-24 at the time of diagnosis. Methods: Data for 6788 patients aged 15-24, diagnosed between 2001 and 2006 and treated as an inpatient in England between 2001 and 2009, were obtained from the National Cancer Data Repository. Eight TYA age-specialist centers were identified in England during this time period; road travel times to these centers were calculated using ArcGIS Network Analyst. Factors thought to affect the likelihood of admission, such as diagnostic group, gender, and age at diagnosis were modeled using logistic regression. Results: Overall, 66.9% of patients never received inpatient treatment at a TYA age-specialist center during the course of their treatment. Increasing travel time significantly reduced the likelihood of admission to a TYA age-specialist center after adjustment for case mix factors. Conclusion: Many TYA patients received little or no inpatient treatment at a TYA age-specialist center during their treatment. The variation between diagnostic groups suggests that factors other than distance to the closest center are affecting the likelihood of admission and demonstrates the potential need to consider improvements to the structured referral practice for this unique group of patients.
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OBJECTIVES: To examine the attitudes of UK healthcare professionals towards what they believe constitutes specialist care for teenage and young adult (TYA) patients with cancer, to determine which factors they considered to be the most important components of specialist TYA care, and whether opinion varied between clinical specialties and reflected the drivers for care improvements within National Health Service (NHS) policy. DESIGN AND METHODS: The study utilised a cross-sectional survey, using Likert scales, to assess attitudes towards specialist care. Responses were grouped using model-based clustering methods implemented in LatentGold 4.5. SETTING: Participants from 98 NHS trusts in the UK were invited to participate in the study. PARTICIPANTS: 691 healthcare professionals involved in the management of TYA patients were approached; of these, 338 responded. RESULTS: 338 healthcare professionals responded (51.9% of those invited). Responses were grouped into three clusters according to the pattern of responses to the questions. One cluster rated age-appropriate care above all else, the second rated both age and site-appropriate care highly while the third assigned more importance to site-specific care. Overall, the psychosocial and supportive aspects of care were rated highest while statements relating to factors known to be important (access to clinical trials, treatment at a high volume centre and specialist diagnostics) were not rated as highly as expected. CONCLUSIONS: Attitudes varied widely between professionals treating TYA patients with cancer as to what constitutes key aspects of specialist care. Further work is needed to quantify the extent to which this influences practice.
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OBJECTIVE: Assessment of psychological distress by patient report is necessary to meet patients' needs throughout the cancer journey. We have previously developed an item bank to assess psychological distress but not evaluated it for cancer survivors. Our first aim in this study was to test whether we could extend our item bank to include cancer survivors. The second aim was to examine whether the item bank could assess positive affect as a single construct alongside negative psychological symptoms. METHODS: Responses from 1315 cancer survivors to the Hospital Anxiety and Depression Scale (HADS) and the Positive and Negative Affect Scale (PANAS) were considered for inclusion in a pre-existing item bank created from a heterogeneous sample of 4914 cancer patients. Differential item functioning (DIF) was used to assess whether HADS responses drawn from the two samples were equivalent. Common-item equating was used to anchor the shared (HADS) items, whilst the PANAS items were added. Item fit was evaluated at each stage, and misfitting items were removed. Unidimensionality was assessed with a principal components factor analysis. RESULTS: The DIF analysis did not reveal any differences between the HADS item locations from the two samples. Three misfitting PANAS items were removed, resulting in a final unidimensional bank of 80 items with good internal reliability (α = 0.85). CONCLUSION: The new item bank is valid for use across the cancer journey, including cancer survivors, and modestly improves the assessment of all levels of psychological distress and positive psychological function.
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Bases de Dados Factuais , Neoplasias/psicologia , Estresse Psicológico/diagnóstico , Sobreviventes/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos Estatísticos , Psicometria/instrumentação , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
The Hubble Deep Field provides one of the deepest multiwavelength views of the distant Universe and has led to the detection of thousands of galaxies seen throughout cosmic time. An early map of the Hubble Deep Field at a wavelength of 850 micrometres, which is sensitive to dust emission powered by star formation, revealed the brightest source in the field, dubbed HDF 850.1 (ref. 2). For more than a decade, and despite significant efforts, no counterpart was found at shorter wavelengths, and it was not possible to determine its redshift, size or mass. Here we report a redshift of z = 5.183 for HDF 850.1, from a millimetre-wave molecular line scan. This places HDF 850.1 in a galaxy overdensity at z ≈ 5.2, corresponding to a cosmic age of only 1.1 billion years after the Big Bang. This redshift is significantly higher than earlier estimates and higher than those of most of the hundreds of submillimetre-bright galaxies identified so far. The source has a star-formation rate of 850 solar masses per year and is spatially resolved on scales of 5 kiloparsecs, with an implied dynamical mass of about 1.3 × 10(11) solar masses, a significant fraction of which is present in the form of molecular gas. Despite our accurate determination of redshift and position, a counterpart emitting starlight remains elusive.
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BACKGROUND: The General Health Questionnaire (GHQ) - 12 was designed as a short questionnaire to assess psychiatric morbidity. Despite the fact that studies have suggested a number of competing multidimensional factor structures, it continues to be largely used as a unidimensional instrument. This may have an impact on the identification of psychiatric morbidity in target populations. The aim of this study was to explore the dimensionality of the GHQ-12 and to evaluate a number of alternative models for the instrument. METHODS: The data were drawn from a large heterogeneous sample of cancer patients. The Partial Credit Model (Rasch) was applied to the 12-item GHQ. Item misfit (infit mean square >or= 1.3) was identified, misfitting items removed and unidimensionality and differential item functioning (age, gender, and treatment aims) were assessed. The factor structures of the various alternative models proposed in the literature were explored and optimum model fit evaluated using Confirmatory Factor Analysis. RESULTS: The Rasch analysis of the 12-item GHQ identified six misfitting items. Removal of these items produced a six-item instrument which was not unidimensional. The Rasch analysis of an 8-item GHQ demonstrated two unidimensional structures corresponding to Anxiety/Depression and Social Dysfunction. No significant differential item functioning was observed by age, gender and treatment aims for the six- and eight-item GHQ. Two models competed for best fit from the confirmatory factor analysis, namely the GHQ-8 and Hankin's (2008) unidimensional model, however, the GHQ-8 produced the best overall fit statistics. CONCLUSIONS: The results are consistent with the evidence that the GHQ-12 is a multi-dimensional instrument. Use of the summated scores for the GHQ-12 could potentially lead to an incorrect assessment of patients' psychiatric morbidity. Further evaluation of the GHQ-12 with different target populations is warranted.