Informatively missing quality of life and unmet needs sex data for immigrant and Anglo-Australian cancer patients and survivors

Abstract

Purpose:Although cancer can seriously affect peoples' sexual well-being, survivors and patients may be reluctant to answer questions about sex. This reluctance may be stronger for immigrants. This study aimed to investigate missing sexual data rates and predictors of missingness in two large studies on immigrants and Anglo-Australian controls with cancer; and to investigate whether those with missing sex data may have worse sexual outcomes than those with complete data. Methods:We carried out two studies aimed at describing the quality of life (QoL) and unmet needs amongst Arabic, Chinese and Greek immigrants versus Anglo-Australians cancer survivors (n=596, recruited from cancer registries) and patients (n=845). Logistic regression was used to model the probability of having missing sex data in either of the questionnaires. We compared the mean of the unmet sex needs responses of those who had missing QoL sex data (but not needs) to those who had completed both, and vice versa. Results:Missing sexual data rates were as high as 65%, with immigrants more likely to skip sex items than Anglo-Australians (p=0.02 for registry study, p <0.0001 for hospital study). Women, older participants and participants with more advanced disease had increased odds of missingness. There was evidence that data were informatively missing. Additionally, the questionnaire which stated that the sexual questions are optional had higher missing data rates. Conclusion:High missing data rates and informatively missing data can lead to biased results. Using the questionnaires that state that they may skip sex items may lead to an underestimation of sexual problems or an overestimation of quality of life.

Integrative review of the supportive care needs of Arab people affected by cancer

“…Of the six included articles, three were conducted in Australia involving samples of Arab, Greek, and Chinese migrants,[91041] two studies were conducted in Jordan with samples comprised of caregivers[3142] whereas the final study from the USA compared the needs of American and Egyptian cancer patients. [43] Four of the studies employed quantitative methodology, with two of the Australian studies using the supportive care needs survey (SCNS), translated into Arabic whereas the Jordanian studies used Arabic translations of the caregiver's need scale,[31] and the family inventory of needs - pediatric - II.…”

Resilience and unmet supportive care needs in patients with cancer during early treatment: A descriptive study

“…pancreatic, gastrointestinal, colon) women with breast cancer may have very different unmet needs such as those related to sexuality (Hill et al, 2011) Second, the non-response rates on the SCNS 34 were highest for questions related to sexuality (ranging from 57 to 62/68 respondents, Table 2). This could be attributed to several factors ranging from cultural reasons for not reporting such private, intimate concerns (Bell et al, 2013) or perhaps the fact that the survey was administered relatively early in the treatment process and thus patients might be less concerned with sexuality issues at this point in treatment. Accordingly, we feel the sexuality domain warrants further investigation and while these initial findings are novel and interesting, they should be interpreted cautiously.…”

Assessing the invariance of a culturally competent multi-lingual unmet needs survey for immigrant and Australian-born cancer patients: a Rasch analysis

“…The marginal fit of the survivorship domain items to the model may be attributable to the fact that they were selected from an existing instrument without considering thematic content. For the sexuality domain, the prevalence of missing data and floor effect may be attributable to people's, and particularly immigrants' unwillingness to share such sensitive information [25,40].…”

“…Once the registry received consent, the details of eligible participants were released to the research team and the participants were then invited by phone/mail to participate in the study [25]. For the treatment cohort, potential participants were identified by doctors in participating Oncology clinics.…”

“…These items were shown to have good Cronbach's alpha coefficients and an Exploratory Factor Analysis supported a single-factor structure [24]. The questionnaire was translated into Arabic, Chinese and Greek using forward-backward translation procedures [25]. Translated Questionnaires were field tested and revised accordingly [26].…”