Patient perspectives of a diagnosis of myeloproliferative neoplasm in a case control study

Background: Myeloproliferative neoplasms (MPNs) including the classic entities; polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis are rare diseases with unknown aetiology. The MOSAICC study, is an exploratory case–control study in which information was collected through telephone questionnaires and medical records. Methods: As part of the study, 106 patients with MPN were asked about their perceived diagnosis and replies correlated with their haematologist’s diagnosis. For the first time, a patient perspective on their MPN diagnosis and classification was obtained. Logistic regression analyses were utilised to evaluate the role of variables in whether or not a patient reported their diagnosis during interview with co-adjustment for these variables. Chi square tests were used to investigate the association between MPN subtype and patient reported categorisation of MPN. Results: Overall, 77.4 % of patients reported a diagnosis of MPN. Of those, 39.6 % recognised MPN as a ‘blood condition’,23.6 % recognised MPN as a ‘cancer’ and 13.2 % acknowledged MPN as an ‘other medical condition’. There was minimal overlap between the categories. Patients with PV were more likely than those with ET to report their disease as a ‘blood condition’. ET patients were significantly more likely than PV patients not to report their condition at all.Patients from a single centre were more likely to report their diagnosis as MPN while age, educational status, and WHO re-classification had no effect. Conclusions: The discrepancy between concepts of MPN in patients could result from differing patient interest in their condition, varying information conveyed by treating hematologists, concealment due to denial or financial concerns. Explanations for the differences in patient perception of the nature of their disease, requires further, larger scale investigation.

Oncological patient anxiety in imaging studies: the PET/CT example

The purpose of this study was to investigate the subjective perception of anxiety pre- and post-procedure, and explore the relationship between demographic, clinical variables and cancer patients' anxiety during a positron emission tomography/computed tomography (PET/CT) scan. Two hundred and thirty-two oncological out patients, with clinical indication for performing an (18)F-2-fluoro-2-deoxy-D-glucose ((18)F-FDG) PET/CT scan and attending a nuclear medicine (NM) department, participated in the study. Patients' anxiety and subjective experience of PET/CT were examined using two self-report questionnaires. The pre-procedure questionnaire focused on demographic information, level of knowledge regarding the scan and subjective perception of anxiety before the procedure. The post-procedure questionnaire included the subjective perception anxiety after the procedure, information adequacy and satisfaction with the NM department. The self-reported data indicate that patients were anxious during PET/CT. Furthermore, our data revealed a significant difference between the anxiety pre-procedure and post-procedure (z = -3909, p < 0.05), in which the anxiety pre-procedure has significantly higher values. No significant correlation was found between anxiety and age of the patients, education levels, adequacy of information or satisfaction with the NM Department. Perception of anxiety post-procedure differs between gender (U = 5641, p = 0.033). In conclusion, PET/CT generated anxiety levels in oncological patients, especially before the procedure. Although patients seemed to be satisfied with information delivered by staff and with the NM Department, attention has to be focused on effective interventions strategies that help patients to reduce anxiety.

The lived experience of diagnosis delivery in motor neurone disease: A sociological-phenomenological study

Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest. In general, doctor-patient communication both at pre and post diagnosis was experienced as highly stressful, distressing and profoundly upsetting. Participants reported such distress as being due to the mode of delivery and communication strategies used by health professionals. We therefore suggest that professional training needs to emphasize the importance to health professionals of fostering greater levels of tact, sensitivity and empathy towards patients diagnosed with devastating, life-limiting illnesses such as MND.

Facilitators and barriers to hypertension self-management in urban African Americans: perspectives of patients and family members.

INTRODUCTION: We aimed to inform the design of behavioral interventions by identifying patients' and their family members' perceived facilitators and barriers to hypertension self-management. MATERIALS AND METHODS: We conducted focus groups of African American patients with hypertension and their family members to elicit their views about factors influencing patients' hypertension self-management. We recruited African American patients with hypertension (n = 18) and their family members (n = 12) from an urban, community-based clinical practice in Baltimore, Maryland. We conducted four separate 90-minute focus groups among patients with controlled (one group) and uncontrolled (one group) hypertension, as well as their family members (two groups). Trained moderators used open-ended questions to assess participants' perceptions regarding patient, family, clinic, and community-level factors influencing patients' effective hypertension self-management. RESULTS: Patient participants identified several facilitators (including family members' support and positive relationships with doctors) and barriers (including competing health priorities, lack of knowledge about hypertension, and poor access to community resources) that influence their hypertension self-management. Family members also identified several facilitators (including their participation in patients' doctor's visits and discussions with patients' doctors outside of visits) and barriers (including their own limited health knowledge and patients' lack of motivation to sustain hypertension self-management behaviors) that affect their efforts to support patients' hypertension self-management. CONCLUSION: African American patients with hypertension and their family members reported numerous patient, family, clinic, and community-level facilitators and barriers to patients' hypertension self-management. Patients' and their family members' views may help guide efforts to tailor behavioral interventions designed to improve hypertension self-management behaviors and hypertension control in minority populations.

Assessing and Reporting the Adverse Effects of Antipsychotic Medication: A Systematic Review of Clinical Studies, and Prospective, Retrospective, and Cross-Sectional Research

Objective: Adverse effects (AEs) of antipsychotic medication have important implications for patients and prescribers in terms of wellbeing, treatment adherence and quality of life. This review summarises strategies for collecting and reporting AE data across a representative literature sample to ascertain their rigour and comprehensiveness. Methods: A PsycINFO search, following PRISMA Statement guidelines, was conducted in English-language journals (1980–July 2014) using the following search string: (antipsychotic* OR neuroleptic*) AND (subjective effect OR subjective experience OR subjective response OR subjective mental alterations OR subjective tolerability OR subjective wellbeing OR patient perspective OR self-rated effects OR adverse effects OR side-effects). Of 7,825 articles, 384 were retained that reported quantified results for AEs of typical or atypical antipsychotics amongst transdiagnostic adult, adolescent, and child populations. Information extracted included: types of AEs reported; how AEs were assessed; assessment duration; assessment of the global impact of antipsychotic consumption on wellbeing; and conflict of interest due to industry sponsorship. Results: Neurological, metabolic, and sedation-related cognitive effects were reported most systematically relative to affective, anticholinergic, autonomic, cutaneous, hormonal, miscellaneous, and non-sedative cognitive effects. The impact of AEs on patient wellbeing was poorly assessed. Cross-sectional and prospective research designs yielded more comprehensive data about AE severity and prevalence than clinical or observational retrospective studies. 3 Conclusions: AE detection and classification can be improved through the use of standardised assessment instruments and consideration of subjective patient impact. Observational research can supplement information from clinical trials to improve the ecological validity of AE data.

Prestadores de cuidados familiares a doentes com VIH/SIDA: perfil psico-emocional e social

RESUMO: Com o presente estudo pretendemos identificar a sobrecarga resultante do envolvimento familiar com os doentes portadores de VIH/SIDA. Numa breve introdução teórica, procedemos à revisão dos conceitos sobrecarga familiar e dos sentimentos/emoções vivenciados pelos prestadores de cuidados. Metodologia: Estudo do tipo descritivo e exploratório, com uma amostra de 51 indivíduos, cuja finalidade consiste na caracterização dos prestadores de cuidados familiares a doentes com VIH/SIDA. Objectivos: Identificar quem o doente com VIH/SIDA, considera ser a pessoa significativa nos cuidados informais. Caracterizar, do ponto de vista sócio-demográfico, os doentes e os prestadores de cuidados familiares. Identificar sentimentos e emoções de vivências, que justifiquem o sofrimento emocional e as repercussões na sobrecarga familiar nos prestadores de cuidados informais. Instrumentos: Na avaliação da sobrecarga familiar, utilizámos o Questionário de Problemas Familiares”- FPQ (Family Problemas Questionnaire). Para identificação dos Acontecimentos de Vida, adoptámos a escala de Holmes e Rahe (Life Events); Para identificação do estrato social escolhemos escala de Graffar. Finalmente, para a caracterização sócio-demografica concebemos dois questionários: um dirigido aos doentes e o outro aos prestadores de cuidados informais. Conclusões: A sobrecarga da doença VIH/SIDA, nos prestadores de cuidados familiares, não é uniforme nas diferentes dimensões. A dimensão sobrecarga subjectiva é superior à objectiva. O suporte social revela-se fraco, relacionado com as perdas familiares, devidas a morte, pelas relações familiares disfuncionais, entre os membros da família, pela falta de apoio e informação dos técnicos de saúde. O sexo feminino é predominante nos cuidadores. As mães e esposas são o grau de parentesco dominante. Os solteiros são o grupo mais afectado pelo VIH/SIDA. Os cuidadores apresentam idade superior à dos doentes. O estrato social preponderante é o médio baixo e o baixo. Os familiares, apesar da atitude negativa dos doentes perante os cuidadores, mantêm-se envolvidos. Segundo a avaliação multiaxial proposta pelo DM-IV, constatámos, ao nível do eixo I, sintomatologia clínica do tipo das perturbações depressivas e perturbações da ansiedade. No eixo IV, os cuidadores evidenciam problemas psicossociais e ambientais, nomeadamente nas categorias problemas com o grupo de apoio primário, problemas relacionados como grupo social, problemas educacionais, problemas de alojamento, problemas económicos. Os problemas relacionados com o grupo de apoio primário, são os que mais parecem contribuir para os problemas psicossociais e ambientais.---------------------------------------ABSTRACT: This study wants to describe several problems as a result of the family’s relationship with HIV/AIDS patients, like overload. In a brief theoric introduction, we made a small revision about the concepts of family’s overload, and feelings or emotions that have been lived by the people who provide cares to the patients with this chronic disease. Methodology: This is a describing and exploratory study, with a sample with 51 individuals, with the aim to characterize the people inside the family who give care HIV/AIDS patients. Aim: To identify who are the most important people in informal cares from the patient perspective. To characterize, in a social-demographic point of view, patients and the people who take care of them. To identify feelings and emotions that could explain an emotional suffer, and some causes in the family burden. Means: to evaluate the family’s overload we used the Family Problems Questionnaire (FPQ). To identify life events we adopted the Holmes and Rahe scale. To identify the social stratum we used the Graffer scale. Finally to do a socio-economic characterization we did two kinds of questionnaire, the first one was directed for the patients, and the second one was chosen for the people who give care. Conclusions: The HIV/AIDS disease burden on the people who takes familiar cares isn’t uniform on several areas that we studied. The subjective overload it is superior to the objective. The social support is weak and poor, and related with family losses by dead, dysfunctional family relationships, and the lack of support and information by the medical staff. Mothers and wives are the dominant relative degree. And the singles are the major group with HIV/AIDS disease. The people who take care are usually older than the sick. The major social status is low or medium-low. The relatives keep evolved though the negative attitude of the sick. According with the evaluation multiaxial proposed by the DM-IV, in axle 1 we note clinic sintomatologic belonging to the type depressive perturbations and perturbations of the anxiety. Regarding with axle IV the caretakers show up psycho-social and environmental problems, namely on the categories: problems with the primary support group and problems related as social group, educational problems, accommodation problems and.

Reclamações, nova metodologia de avaliação do risco clínico

RESUMO - A OMS estima que dezenas de milhares de doentes em todo o mundo sofrem consequências ou morrem devido a cuidados e práticas médicas pouco seguras (JHA, A., ed. lit., 2008). Este estudo surge com o intuito de gerar conhecimento acerca dos EA e promover a melhoria da gestão do risco com base na perspectiva do doente, obtida através das reclamações. As reclamações contêm informação primordial acerca das necessidades reais, manifestas e sentidas pelo doente e as pessoas que lhes estão próximas (familiares, cuidadores informais). Elas podem reportar EA e constituir um veículo importante da melhoria da qualidade. O objectivo geral do estudo é contribuir para a melhoria da qualidade dos serviços de saúde, particularmente no que diz respeito à melhoria da segurança do doente. Para tal, será desenvolvida metodologia de análise de reclamações, para avaliação da ocorrência de EA. O instrumento de colheita de dados consiste numa checklist de verificação de variáveis, para posterior caracterização e realização de testes estatísticos. ----------ABSTRACT - The WHO estimate that tens of thousands customers around the world suffer or die due to Care and unsafe medical practices consequences (JHA, A., ed. lit., 2008). The aim of this research is to generate knowledge about the adverse events and promote the improvement of risk management based on patient perspective, obtained through complaints. Claims/Complaints contain vital information about the real needs, perceived and manifest by the patient and those close to them (families, informal caregivers). They can report adverse events and provide an essential vehicle to quality improvement. The study overall objective is to contribute to health services quality improvement, particularly as regard to improving the patient safety. For this will be developed methodology of complaints analysis, to adverse events occurrence assessment. The instrument for data collect consists in a checklist to variables verification toward further characterizati

Reflexiones en salud pública

Desde una visión general y práctica este texto facilita la reflexión sobre tópicos de interés para la salud pública. Con un lenguaje sencillo, busca aproximarse al estudio de la salud desde una visión interdisciplinar, partiendo del reconocimiento del rol que le compete al individuo, la sociedad y el Estado. El objetivo general es promover en el lector el análisis crítico de problemáticas relacionadas con el ámbito de la salud pública, constituyéndose en una iniciativa para el posterior desarrollo de acciones en el área.

Push or pull? : The relationship between quality of care and use of complementary and alternative medicine among patients with lung cancer in Sweden

Little is known about relationships between quality of care (QoC) and use of complementary and alternative medicine (CAM) among patients with lung cancer (LC). Purpose: This study examines CAM-use among patients with LC in Sweden, associations between QoC and CAM-use among these patients, and reported aspects of LC-care perceived as particularly positive and negative by patients, as well as suggestions for improving QoC. Methods: Survey data from 94 patient members of the Swedish LC patient organization about CAM-use and QoC as measured by the instrument “Quality from the patient’s perspective��� were analyzed. Results: Fifty (53%) LC-patients used CAM, with 40 of the CAM-users reporting that CAM helped them. The most common CAMs used were dietary supplements and natural remedies, followed by prayer. Significantly more patients reported using prayer and meditation for cure than was the case for other types of CAM used. Less than half the CAM-users reported having spoken with staff from the biomedical health care system about their CAM-use. Patients provided numerous suggestions for improving LC-care in a variety of areas, aiming at a more effective and cohesive care trajectory. No differences in QoC were found between CAM-users and non-CAM-users, but differences in CAM-use i.e. type of CAM, reasons for using CAM, and CAM-provider consulted could be associated with different experiences of care. Conclusions: It is important to recognize that CAM-users are not a homogeneous group but might seek different types of CAMs and CAM-providers in different situations depending on experiences of care.

En översikt av vilka faktorer som har samband med patientens upplevelse av kontinuitet i vården : En litteraturstudie

Forskning visar på att patienter önskar kontinuitet, då de upplever att det bidrar till känslan av trygghet och närhet. Det ger sjuksköterskan möjlighet att lära känna personen och en möjlighet att bättre följa upp gjorda åtgärder. Syfte Syftet med denna studie var att beskriva vilka faktorer som har samband med patientens upplevelse av kontinuitet i vården. Metod Studien har genomförts som en litteraturstudie. Resultat Resultatet visade att det var viktigt för kontinuiteten att de fick träffa en sjuksköterska som de kände sedan tidigare och att det var samma sjuksköterska vid alla vårdtillfällen. Det var även viktigt att sjuksköterskan de träffade var uppdaterad på deras medicinska historia. En viktig faktor som höjde kontinuiteten var om patienten hade en kronisk sjukdom, då de patienterna oftare kräver regelbunden uppföljning med fler besök hos vården. Patienterna upplevde större kontinuitet om vården utfördes av sjuksköterska istället för av andra vårdgivare Sjuksköterskorna var mer anpassningsbara, flexibla och tog sig mer tid med patienten. Slutsats Studien visar att kontinuitet är något som patienter upplever som viktigt när de möter vården men det saknas forskning om hur vården ska organiseras, för att kontinuiteten ska upplevas bättre ur ett patientperspektiv, balanserat mot organisationens behov av att spara tid och pengar.

Faktorer som påverkar patienters upplevelse av omvårdnad under sin vistelse på akutmottagning. : - En litteraturstudie

Bakgrund: På en akutmottagning kommer patienter i olika tillstånd och behov. Det är sjuksköterskan som ofta gör de första bedömningarna och därför är det av stor vikt att bemötandet från sjuksköterskan är positivt för att skapa trygghet. Ökat patientflöde och långa väntetider är några faktorer som är påvisade att kunna påverka upplevelsen för patienterna av sin vistelse på akutmottagningen. Syfte: Syftet med litteraturöversikten var att beskriva faktorer som påverkar patienters upplevelse av omvårdnad under sin vistelse på akutmottagning. Metod: Studien genomfördes som en litteraturöversikt. Databaserna CINAHL och PubMed användes för att söka efter artiklar. Resultat: Sex underkategorier valdes ut: bemötande, delaktighet, information, väntetid, kommunikation och kontinuitet, sjuksköterskans kunskap och kompetens. Resultatet visade att många patienter ansåg att sjuksköterskan var skicklig i sina arbetsuppgifter och var nöjda med bemötandet från sjuksköterskan, men att långa väntetider och bristande information påverkade upplevelsen av omvårdnad. Det fanns en tydlig önskan över att få mer information om sin väntetid, behandling och undersökningar. Brister i detta, skapade en otrygghet och en känsla av vara bortglömd hos patienterna. Slutsats: Sjuksköterskor på en akutmottagning behöver besitta en stor kommunikationsförmåga. Detta för att kunna ge patienterna en så bra upplevelse som möjligt. Slutsatser av resultatet har påvisat att det krävs förbättring inom flera områden för att ge patienter en bättre upplevelse av omvårdnaden under sin vistelse på akutmottagningen.

Tuberculose: conhecimentos, representações sociais e experiências da doença na visão do portador

Tuberculosis is considered one of the most ancient human diseases, cases were registered 3900 years before Christ, and it is currently regarded as a serious public health problem in the world due to several factors such as income mismanagement, precarious standard of life and some sort of prejudice comprised by the word tuberculosis. Taking this into consideration, it was developed a descriptive and exploratory study aiming at analyzing the social representations of tuberculosis made by its patient from the Unidades de Saúde da Família (Family Health Units a public health program) in Campina Grande City PB, in relation to the decentralization of the policies that administrate the disease. It was interviewed 34 tuberculosis patient that were being treated from 2007 to 2008. The age group of the interviewees varied from 10 to 60 years old, but most of them were between 36 and 60 years old (58,8%, n=20), some were young adult and adult (21 35 years old), with 11 (32,3%) respondents, and, less frequent, children and teenagers (11 20 years old), with 03 (8,8%) participants. Data was collected through semi-structured interview. The questions that guided the research were elaborated based on the operational recommendations of DOTS strategy; that is: access to laboratory examinations; medication guarantee; directly observed treatment. Besides that, the experiences of the patient were considered in their relation with the family and the different social groups. The analysis of the discursive material was submitted to the Analyse Lexicale par Context d un Ensemble de Segments de Texte software - ALCESTE 4.7. Data interpretation showed five categories for the social representations of the tuberculosis patient that participated in DOTS strategy: 1) the accessibility of the health assistance service; 2) the patient perspective of the disease; 3) the change in the operation of the productive life; 4) the signals and symptoms of the tuberculosis disease; 5) the rearrangement and mechanisms used to face the disease. The Central Nucleus reveals that tuberculosis is a transmissible disease that can be prevented by people through educational practices, health promotion, active search for symptomatic respiratory and control of the carriers communication; these mechanisms should be incorporated to the routine of all participants of the family health groups. The Intermediate Elements, based on quotidian life, as well as the individual experiences of the tuberculosis patient, reveals prejudiced attitude and beliefs that lead to isolation and restriction of interpersonal relationship. Peripheral Elements were constituted by themes that showed the patient feelings of indignation because of the social barriers they had to face in the Family Health Units during the treatment. These elements demonstrate a negative perspective of the representation concerning the accessibility, i.e. inadequate structure of the health service; long distance to the Health Centre, this factormakes it difficult for the patient to continue the treatment; scheduling delay; and limited service regarding other requests (doctor, dentist etc). One expects to contribute for the construction of a new perspective of the health question between the different agents who make the assistencial institutions and formation of professionals, either in central or local scope

Le cure oncologiche e la prospettiva del paziente. Revisione di letteratura e un caso di studio

Numerose ricerche indicano i modelli di cure integrate come la migliore soluzione per costruire un sistema più efficace ed efficiente nella risposta ai bisogni del paziente con tumore, spesso, però, l’integrazione è considerata da una prospettiva principalmente clinica, come l’adozione di linee guida nei percorsi della diagnosi e del trattamento assistenziale o la promozione di gruppi di lavoro per specifiche patologie, trascurando la prospettiva del paziente e la valutazione della sua esperienza nei servizi. Il presente lavoro si propone di esaminare la relazione tra l’integrazione delle cure oncologiche e l’esperienza del paziente; com'è rappresentato il suo coinvolgimento e quali siano i campi di partecipazione nel percorso oncologico, infine se sia possibile misurare l’esperienza vissuta. L’indagine è stata svolta sia attraverso la revisione e l’analisi della letteratura sia attraverso un caso di studio, condotto all'interno della Rete Oncologica di Area Vasta Romagna, tramite la somministrazione di un questionario a 310 pazienti con neoplasia al colon retto o alla mammella. Dai risultati, emerge un quadro generale positivo della relazione tra l’organizzazione a rete dei servizi oncologici e l’esperienza del paziente. In particolare, è stato possibile evidenziare quattro principali nodi organizzativi che introducono la prospettiva del paziente: “individual care provider”,“team care provider”,“mixed approach”,“continuity and quality of care”. Inoltre, è stato possibile delineare un campo semantico coerente del concetto di coinvolgimento del paziente in oncologia e individuare quattro campi di applicazione, lungo tutte le fasi del percorso: “prevenzione”, “trattamento”,“cura”,“ricerca”. Infine, è stato possibile identificare nel concetto di continuità di cura il modo in cui i singoli pazienti sperimentano l’integrazione o il coordinamento delle cure e analizzare differenti aspetti del vissuto della persona e dell’organizzazione.

Adjunct prednisone therapy for patients with community-acquired pneumonia: a multicentre, double-blind, randomised, placebo-controlled trial

BACKGROUND Clinical trials yielded conflicting data about the benefit of adding systemic corticosteroids for treatment of community-acquired pneumonia. We assessed whether short-term corticosteroid treatment reduces time to clinical stability in patients admitted to hospital for community-acquired pneumonia. METHODS In this double-blind, multicentre, randomised, placebo-controlled trial, we recruited patients aged 18 years or older with community-acquired pneumonia from seven tertiary care hospitals in Switzerland within 24 h of presentation. Patients were randomly assigned (1:1 ratio) to receive either prednisone 50 mg daily for 7 days or placebo. The computer-generated randomisation was done with variable block sizes of four to six and stratified by study centre. The primary endpoint was time to clinical stability defined as time (days) until stable vital signs for at least 24 h, and analysed by intention to treat. This trial is registered with ClinicalTrials.gov, number NCT00973154. FINDINGS From Dec 1, 2009, to May 21, 2014, of 2911 patients assessed for eligibility, 785 patients were randomly assigned to either the prednisone group (n=392) or the placebo group (n=393). Median time to clinical stability was shorter in the prednisone group (3·0 days, IQR 2·5-3·4) than in the placebo group (4·4 days, 4·0-5·0; hazard ratio [HR] 1·33, 95% CI 1·15-1·50, p<0·0001). Pneumonia-associated complications until day 30 did not differ between groups (11 [3%] in the prednisone group and 22 [6%] in the placebo group; odds ratio [OR] 0·49 [95% CI 0·23-1·02]; p=0·056). The prednisone group had a higher incidence of in-hospital hyperglycaemia needing insulin treatment (76 [19%] vs 43 [11%]; OR 1·96, 95% CI 1·31-2·93, p=0·0010). Other adverse events compatible with corticosteroid use were rare and similar in both groups. INTERPRETATION Prednisone treatment for 7 days in patients with community-acquired pneumonia admitted to hospital shortens time to clinical stability without an increase in complications. This finding is relevant from a patient perspective and an important determinant of hospital costs and efficiency. FUNDING Swiss National Science Foundation, Viollier AG, Nora van Meeuwen Haefliger Stiftung, Julia und Gottfried Bangerter-Rhyner Stiftung.

Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients

Colorectal cancer is one of the most common invasive cancers, and is responsible for considerable physical and psychosocial morbidity. Understanding the quality of life experienced by colorectal cancer patients is essential for evaluating the full impact of the disease on individuals, their families and their communities. Patient perspective is essential in establishing a proper understanding of the quality of life of colorectal cancer patients. Despite this, few studies have employed a qualitative methodology to explore quality of life issues for colorectal cancer patients. A review of the literature identified only seven qualitative studies pertaining to quality of life issues for colorectal cancer patients, a surprising finding given the prevalence of this cancer. Accordingly, this study sought to build on the findings of previous qualitative research by providing descriptive data on the quality of life and psychosocial variables most salient to colorectal cancer patients. Six core themes emerged from interview and focus group data: Satisfaction with diagnosis and treatment; support (including information provision); quality of life; benefits of diagnosis; making sense of the cancer experience; and coping strategies. The information derived from this study will help inform the development of supportive care services to address the needs of the increasing number of people diagnosed with colorectal cancer. Copyright (c) 2005 John Wiley & Sons, Ltd.