Content Analysis of Online Focus Group Discussions are a Valid and Feasible Mode When Investigating Sensitive Topics Among Young Persons With a Cancer Experience

BACKGROUND: Clinical research often lacks participants of young age. Adding to the small amount of scientific studies that focus on the population entering adulthood, there are also difficulties to recruit them. To overcome this, there is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults. With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children. OBJECTIVE: The aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience. METHODS: One hundred thirty-three young persons (16-25 years) previously diagnosed with cancer, participated in 39 synchronous online focus group discussions (response rate 134/369, 36%). The mode of administration was evaluated by analyzing participant characteristics and interactions during discussions, as well as group members' evaluations of the discussions. RESULTS: Persons diagnosed with central nervous tumors (n=30, 27%) participated to a lower extent than those with other cancer types (n=103, 39%; χ 2= 4.89, P=.03). The participants described various health impairments that correspond to what would be expected among cancer survivors including neuropsychiatric conditions and writing disabilities. Even though participants were interested in others' experiences, sexual issues needed more probing by the moderators than did fertility-related issues. Group evaluations revealed that participants appreciated communicating on the suggested topics and thought that it was easier to discuss sex when it was possible to be anonymous toward other group members. CONCLUSIONS: Online focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience

Experiences of patients undergoing chemotherapy - A qualitative study of adults attending Uganda Cancer Institute

Background: Cancer is a global public health challenge and how patients in countries with poor healthcare infrastructure experience cancer treatment is largely unknown. Purpose: The objective of this study was to describe adult Ugandan cancer patients’ experiences of undergoing chemotherapy treatment. Methodology: Using a qualitative descriptive design, seven in-patients with varying cancer diagnoses at the Uganda Cancer Institute were interviewed about their experiences of undergoing chemotherapy treatment; the interviews were transcribed and analysed thematically. Results: The analysis resulted in nine subthemes, which were categorized under three main themes: ‘experiences related to the body’, with the subthemes dry and sensitive skin, changes in eating and bowel habits, fever and feelings of abnormal body sensation; ‘thoughts and feelings’, with four subthemes reflecting the psychosocial impact of chemotherapy; and ‘actively dealing with discomfort’, with three subthemes describing how patients dealt with side effects, such as by sticking to a diet. Conclusion: Receiving chemotherapy treatment is difficult, and the side effects negatively influenced patients’ bodies and moods. Dealing actively with discomfort and accepting negative impacts in hope of a cure helped the participants manage the acute complications related to the treatment. We recommend the development of interventions to ease discomfort due to chemotherapy

Development of a 12-item short version of the HIV stigma scale

BACKGROUND: Valid and reliable instruments for the measurement of enacted, anticipated and internalised stigma in people living with HIV are crucial for mapping trends in the prevalence of HIV-related stigma and tracking the effectiveness of stigma-reducing interventions. Although longer instruments exist, e.g., the commonly used 40-item HIV Stigma Scale by Berger et al., a shorter instrument would be preferable to facilitate the inclusion of HIV stigma in more and broader surveys. Therefore, the aim of this work was to develop a substantially shorter, but still valid, version of the HIV Stigma Scale. METHODS: Data from a psychometric evaluation of the Swedish 40-item HIV Stigma Scale were reanalysed to create a short version with 12 items (three from each of the four stigma subscales: personalised stigma, disclosure concerns, concerns with public attitudes and negative self-image). The short version of the HIV stigma scale was then psychometrically tested using data from a national survey investigating stigma and quality of life among people living with HIV in Sweden (n = 880, mean age 47.9 years, 26% female). RESULTS: The hypothesized factor structure of the proposed short version was replicated in exploratory factor analysis without cross loadings and confirmatory factor analysis supported construct validity with high standardised effects (>0.7) of items on the intended scales. The χ(2) test was statistically significant (χ(2) = 154.2, df = 48, p 0.4 for all items, with a variation indicating that the broadness of the concept of stigma had been captured. All but two aspects of HIV-related stigma that the instrument is intended to cover were captured by the selected items in the short version. The aspects that did not lose any items were judged to have acceptable psychometric properties. The short version of the instrument showed higher floor and ceiling effects than the full-length scale, indicating a loss of sensitivity in the short version. Cronbach's α for the subscales were all >0.7. CONCLUSIONS: Although being less sensitive in measurement, the proposed 12-item short version of the HIV Stigma Scale has comparable psychometric properties to the full-length scale and may be used when a shorter instrument is needed

Into the 21st Century

EditorialMary Holmes, Nathan Manning, Åsa Wettergre

Adolescents' and young adults' experiences of childhood cancer: descriptions of daily life 5 years after diagnosis

Background: Survivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has only been studied to a limited extent, and an increased understanding of this young group is needed to improve follow-up care. Objective: The aim was to gain a deeper understanding of how childhood cancer affects the lives of survivors by exploring adolescents' and young adults' views of what it is like living with this experience. Methods: Fifty-nine people 11-22 years old were interviewed a median of five years after diagnosis (response rate 66%). Data was collected through telephone interviews and analysed with qualitative content analysis. Results: Three groups of informants were identified according to their descriptions of influence on daily life: ‘Feeling like anyone else’ (the informants who described that the cancer experience had almost no influence on current life) (49%), ‘Feeling almost like others’(those who described some influence) (44%) and ‘Feeling different’ (those describing a great influence on current life) (7%). Conclusions: Most of the adolescents and young adults appear to get along well, although many informants described that life was affected to some extent by having had cancer. Implications for Practice: Necessary follow-up care that can identify those young survivors of childhood cancer having trouble with daily life and offer them support to strengthen their resources in managing difficulties in relation to having had cancer

Crohn's disease activity index and Vienna classification - Is it worthwhile to calculate before surgery?

Background: Crohn's disease (CD) patients with increased disease activity may reveal an increased risk for perioperative complications. The `Crohn's disease activity index' (CDAI) and the `Vienna classification' (VC) were developed for standardized disease activity estimations. The significance of these scores to predict extent, type and early outcome of surgery in CD patients was analyzed. Methods: In 179 surgically treated CD patients, the CDAI and VC were assessed from a prospective database. Relations of the scores with CD risk factors, type, number, location and complications of surgery were analyzed. Results: VC behavior and location subtypes were associated with distinct types of surgery (i.e. `strictureplasty' in `stricturing disease', `colon surgery' in `colon involvement'), but not with surgery type and extent or outcome. Surgery extent (i.e. with 5 vs. 3 `surgical sites' 425 +/- 25 vs. 223.3 +/- 25) and complications (357.1 +/- 36.9 (with) vs. 244.4 +/- 13 (without)) were associated with elevated CDAI levels; however, nicotine abuse remained the only significant risk factor for perioperative complications after multiple logistic regression. Conclusion: The significance of VC or CDAI for predicting the extent of surgery or complications is limited. None of the tested variables except preoperative nicotine abuse influenced the likelihood for perioperative complications. Copyright (c) 2006 S. Karger AG, Base

Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress

PURPOSE: The purpose of the study is to evaluate the feasibility of a self-help web-based intervention to alleviate sexual problems and fertility distress in adolescents and young adults with cancer. METHODS: Twenty-three persons with cancer (19 women and 4 men, age 18-43, 1-5 years post-diagnosis of lymphoma, breast, gynecologic, central nervous system, or testicular cancer) were recruited to test a 2-month web-based program targeting sexual problems or fertility distress. The programs were organized in modules with educational and behavior change content, including texts, illustrations, exercises, and video vignettes. The program also included a discussion forum and an "ask the expert" forum. In addition, the sexuality program offered two telephone consultations. Feasibility (regarding demand, acceptability, preliminary efficacy, and functionality) was evaluated with the website system data, telephone interviews, continuous online evaluations, and study-specific measures. RESULTS: Fifteen participants completed four modules or more. Most of the program features were used and well accepted by these "committed users." The web-based format enabled flexible use by participants with diverse needs. Preliminary efficacy was indicated by self-reported increased knowledge and skill in handling sexual problems and fertility distress. The website was easy to use and functioned well technically. CONCLUSIONS: The present study indicated that this web-based intervention was feasible for adolescents and young adults with cancer. The effectiveness of the intervention in decreasing sexual problems and fertility distress will be tested in a population-based randomized controlled trial for adolescents and young adults with cancer. TRIAL REGISTRATION: ISRCTN36621459

Psychometric properties of the EORTC QLQ-C30 in Uganda

BACKGROUND: Self-reported measures play a crucial role in research, clinical practice and health assessment. Instruments used to assess self-reported health-related quality of life (HRQoL) need validation to ensure that they measure what they are intended to, detect true changes over time and differentiate between subjects. A generic instrument measuring HRQoL adapted for use among people living with cancer in Uganda is lacking; therefore, this study aimed to evaluate the psychometric properties of the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 in patients with cancer in Uganda. METHODS: Adult patients with various types of cancer (n = 385) cared for at the Uganda Cancer Institute answered the EORTC QLQ-C30 in Luganda or English language, the two most spoken languages in the country. The two language versions were evaluated with regard to data quality (floor and ceiling effects and missing responses), reliability (internal consistency) and validity (construct, known-group and criterion). Construct validity was examined through confirmatory factor analysis (CFA). Mean scores were compared between groups differing in disease stage to assess known-group validity. Criterion validity was examined according to associations between two QLQ-C30 subscales (Global quality of life and Physical function) and the Karnofsky Performance Scale (KPS). RESULTS: Floor and ceiling effects were observed for several scales in the Luganda and English versions. All EORTC scales with the exception of Cognitive function (Luganda α = 0.66, English α = 0.50) had acceptable Cronbach's alpha values (0.79-0.96). The CFA yielded good fit indices for both versions (RMSEA = 0.08, SRMR = 0.05 and CFI = 0.93). Known-group validity was demonstrated with statistically significant better HRQoL reported by patients with disease stages I-II compared to those in stages III-IV. Criterion validity was supported by positive correlations between KPS and the subscales Physical function (Luganda r = 0.75, English r = 0.76) and Global quality of life (Luganda r = 0.59, English r = 0.72). CONCLUSION: The Luganda and English versions of the EORTC QLQ-C30 appear to be valid and reliable measures and can be recommended for use in clinical research to assess HRQoL in adult Ugandans with cancer. However, the cognitive scale did not reach acceptable internal consistency and needs further evaluation