Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up.

PURPOSE: The aim of this study was to develop and ensure the content validity of a new patient-reported outcome measure, the Cancer Patient Empowerment Questionnaire (CPEQ), to measure the level of, desire for, and enablement of empowerment among cancer patients in follow-up. METHODS: An iterative process based on: (i) empowerment theories by Zimmerman and Tengland, (ii) a systematic review of questionnaires measuring empowerment or related concepts among cancer patients, (iii) qualitative data from 18 semi-structured interviews with Danish cancer patients in follow-up, (iv) input from a group of eight cancer patients involved as co-researchers and from an expert steering group, and (v) cognitive interviews with 15 cancer patients in follow-up. RESULTS: The items for the CPEQ were developed and revised and 12 versions of the questionnaire were evaluated. The final version consists of 67 items, covering three different dimensions of empowerment: (A) empowerment outcomes consisting of three components: (A1) the intrapersonal-, (A2) interactional-, and (A3) behavioral component, (B) empowerment facilitators (enablement), and (C) the value of empowerment. CONCLUSIONS: This study documents the theoretical and empirical basis for the development of the CPEQ and its content validity. The CPEQ provides a tool for researchers to assess the level of, desire for, and enablement of empowerment among cancer patients. The next steps will be to use the CPEQ in a nationwide study of empowerment in cancer follow-up and subsequently shorten the CPEQ based on psychometric methods in order to make it more relevant in clinical studies.

Pattern Recognition Molecules of the Lectin Pathway-Screening of Patients with Suspected Immunodeficiency.

PURPOSE: To compare plasma concentrations of all lectin pathway (LP) pattern recognition molecules (PRMs) in patients referred for laboratory evaluation due to recurrent infections with healthy individuals. METHODS: Patients were divided into categories according to referral: recurrent airway infections (RAI), recurrent abscesses, common variable immunodeficiency (CVID), lung transplantation candidates (LTX), and 'other causes'. LP PRMs (mannose-binding lectin (MBL), collectin liver 1 (CL-L1), H-ficolin, L-ficolin, M-ficolin) and C-reactive protein (CRP) were determined in 332 patients and 150 healthy blood donors using time-resolved immunofluorometric assays. RESULTS: None of the LP PRMs was found in lower concentration in the patient categories; however, several PRMs were detected in higher concentrations. M-ficolin was found in higher concentrations in all patient categories. Patients suffering from RAI had higher concentrations of CL-L1 and H-ficolin. Patients suffering from abscesses exhibited higher concentrations of MBL and CL-L1, whereas LTX had higher concentrations of MBL. Patients with other causes of referral had higher concentrations of MBL and CL-L1. Prevalence of combined deficiencies of PRMs in patient categories and controls did not differ. CRP was used as a marker of ongoing inflammation and was significantly higher among all patient categories. Furthermore, CRP was found to correlate with both M-ficolin and L-ficolin. CONCLUSION: The results suggest that neither single nor combined deficiencies of LP PRMs are more frequent among patients referred for an immunological evaluation than in healthy individuals. Future studies are needed and should focus on deficiencies of LP PRMs combined with deficiencies in other parts of the immune system.

The impact of using peer interviewers in a study of patient empowerment amongst people in cancer follow-up.

BACKGROUND: A range of benefits have been reported from engaging peer interviewers in qualitative interviews, but little systematic evaluation exists to assess their impact on both process and outcomes of qualitative interviews in health research. OBJECTIVE: To investigate the impact of involving patient representatives as peer interviewers in a research project on patient empowerment. DESIGN: 18 interviews were carried out as part of the wider study, seven by the academic researcher alone and eleven jointly with a peer interviewer. The interviews were analysed quantitatively and qualitatively to explore potential differences between interviews conducted by the researcher alone and interviews conducted jointly by the researcher and the peer interviewers. A phone evaluation of the peer interviews was carried out with the research participants, and notes were thematically analysed to understand their experiences. RESULTS: Differences were identified between the academic researcher and the peer interviewers in the types of questions they asked and the degree to which personal narrative was used in the interview. Peer interviewers varied significantly in their approach. Research participants were positive about the experience of being interviewed by a peer interviewer. No firm conclusions could be made about impact on outcomes. DISCUSSION AND CONCLUSIONS: The uniqueness and complexity of qualitative interviews made it difficult to provide any firm conclusions about the impact of having peer interviewers on the research outcomes, and the benefits identified from the analysis mostly related to the process of the interviews. Benefits from using peer interviewers need to be considered alongside relevant ethical considerations, and available resources for training and support.

What Facilitates "Patient Empowerment" in Cancer Patients During Follow-Up: A Qualitative Systematic Review of the Literature.

Empowerment is a concept of growing importance in cancer care, but little is known about cancer patients' experiences of empowerment during follow-up. To explore this area, a qualitative systematic literature review was conducted in PubMed, CINAHL, and PsycINFO. A total of 2,292 papers were identified and 38 articles selected and included in the review. The thematic synthesis of the papers resulted in seven analytical themes being identified: empowerment as an ongoing process, knowledge is power, having an active role, communication and interaction between patients and health care professionals, support from being in a group, religion and spirituality, and gender. Very few articles explicitly explored the empowerment of cancer patients during follow-up, and the review identified a lack of attention to patients' own understandings of empowerment, a lack of specific focus on empowerment during follow-up, and insufficient attention to collective empowerment, as well as ethnic, social, and gender differences.

Conceptualizing patient empowerment in cancer follow-up by combining theory and qualitative data.

BACKGROUND: Patient empowerment (PE) may be defined as the opportunity for patients to master issues important to their own health. The aim of this study was to conceptualize PE and how the concept manifests itself for cancer patients attending follow-up, in order to develop a relevant and sensitive questionnaire for this population. MATERIAL AND METHODS: A theoretical model of PE was made, based on Zimmerman's theory of psychological empowerment. Patients who were in follow-up after first line treatment for their cancer (n = 16) were interviewed about their experiences with follow-up. A deductive thematic analysis was conducted to contextualize the theory and find concrete manifestations of empowerment. Data were analyzed to find situations that expressed empowerment or lack of empowerment. We then analyzed what abilities these situations called for and we further analyzed how these abilities fitted Zimmerman's theory. RESULTS: In all, 16 patients from two different hospitals participated in the interviews. PE in cancer follow-up was conceptualized as: (1) the perception that one had the possibility of mastering treatment and care (e.g. the possibility of 'saying no' to treatment and getting in contact with health care when needed); (2) having knowledge and skills regarding, for example treatment, care, plan of treatment and care, normal reactions and late effects, although knowledge and information was not always considered positively; and (3) being able to make the health care system address one's concerns and needs and, for some patients, also being able to monitor one's treatment, tests and care. CONCLUSION: We conceptualized PE based on Zimmerman's theory and empirical data to contextualize the concept in cancer follow-up. When developing a patient reported outcome measure measuring PE for this group of patients, one needs to be attentive to differences in wishes regarding mastery.

User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice.

BACKGROUND: This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015-2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context. METHODS: The Empowerment project adopted a consultative and collaborative approach to user involvement and co-researchers were involved from the early stages and all through the project. Users gave feedback on the proposal, helped develop project documents and research tools, acted as peer interviewers in qualitative interviews, participated in data analysis and development of questionnaires, and co-authored journal articles. The workshop held with the academic researchers and co-researchers consisted of two parallel focus groups and a joint group discussion, following an interactive and informal format to facilitate discussion and exchange of ideas. FINDINGS: The focus group resulted in eleven recommendations for the further development of user-involvement in Denmark. Key issues encountered were the general lack of guidelines on user-involvement in the Danish context and the need for more organisational support. Particular issues, such as payment, recruitment and training, need to be carefully considered within individual projects and within the national context in which projects are carried out. CONCLUSION: The paper adds to the current very limited knowledge base on user-involvement in the Danish context and provides a set of early recommendations for the further development of the practice in Danish Health Research. User-involvement needs to be developed with consideration to the local context, but common challenges also emphasise the usefulness of cross-country comparisons and knowledge exchange.

Association of lectin pathway proteins with intra-abdominal Candida infection in high-risk surgical intensive-care unit patients. A prospective cohort study within the fungal infection network of Switzerland.

OBJECTIVES: Human studies on the role of mannose-binding lectin (MBL) in patients with invasive candidiasis have yielded conflicting results. We investigated the influence of MBL and other lectin pathway proteins on Candida colonization and intra-abdominal candidiasis (IAC) in a cohort of high-risk patients. METHODS: Prospective observational cohort study of 89 high-risk intensive-care unit (ICU) patients. Levels of lectin pathway proteins at study entry and six MBL2 single-nucleotide polymorphisms were analyzed by sandwich-type immunoassays and genotyping, respectively, and correlated with development of heavy Candida colonization (corrected colonization index (CCI) ≥0.4) and occurrence of IAC during a 4-week period. RESULTS: Within 4 weeks after inclusion a CCI ≥0.4 and IAC was observed in 47% and 38% of patients respectively. Neither serum levels of MBL, ficolin-1, -2, -3, MASP-2 or collectin liver 1 nor MBL2 genotypes were associated with a CCI ≥0.4. Similarly, none of the analyzed proteins was found to be associated with IAC with the exception of lower MBL levels (HR 0.74, p = 0.02) at study entry. However, there was no association of MBL deficiency (<0.5 µg/ml), MBL2 haplo- or genotypes with IAC. CONCLUSION: Lectin pathway protein levels and MBL2 genotype investigated in this study were not associated with heavy Candida colonization or IAC in a cohort of high-risk ICU patients.